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The hopes and dreams you have for your child can be significantly disrupted when challenges or difficulties in his or her development emerge. When Autism Spectrum Disorder (ASD) is suspected or confirmed, parents and families may have to learn new ways to foster their child’s health and happiness. They may also feel overwhelmed and wonder what’s next.

At Holland Bloorview Kids Rehabilitation Hospital, we want to support parents and families of children and youth with ASD.

Listen to ASD Engage to hear from psychologist Dr. Heidi Kiefer and psychometrists Shawn Brumby and Maureen Mosleh as they help move beyond the cold facts and details of Autism Spectrum Disorder (ASD). Through the series, the team engages with professionals, families and children that make the ASD journey come to life. Podcast episodes give access to specialists who provide assessment and treatment, and also connects with parents and caregivers at different points in their ASD journey, who open up about the thoughts and feelings that accompany raising a child with ASD and practical tips to take away and try.

Episode transcripts

Episode 1: Parent story with Adrienne – Was ASD on your radar?

Dr. Heidi [00:00:11] Welcome to ASDengage the podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist. 

Maureen [00:00:24] I'm Maureen Mosleh, a psychometrist. 

Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with. 

Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process. 

Dr. Heidi [00:01:01] Welcome to Episode one of ASTM Engage in this episode, we're going to introduce you to Adrienne. Adrienne has two daughters. Her youngest, Amira, was diagnosed with ASD seven years ago. We wanted to start with a chat with Adrienne because she's like so many parents who've gone on a journey with a child, with ASD or maybe about to. We think hearing her story can help us dive into more than just the facts and details of assessment and diagnosis of ASD, but the actual experience that a parent and child has. It begins with Adrienne briefly telling us about how she became involved with Holland Bloorview. But after that, the discussion turns to Amira's assessment, the wait and the actual diagnosis. 

Shawn [00:01:47] So, Adrienne, tell us about your involvement with Holland Bloorview. 

Adrienne [00:01:50] Wonderful. So my both my kids actually received services here and have for a while and kind of the minute we walked in the building and kind of felt that sense of ease in feeling like we were with people who understood us and understood the girls. We wanted to be a bit more connected. I wanted to be a bit more connected. I realized there was this autism research center that I had heard a little bit about and knew there were some amazing professionals working in, but didn't know quite how to get myself in there to learn more about what was going on. So we became research participants so that we could kind of learn more about what the research department was doing, learn more about our own kids, and kind of become more aligned with things going on at Holland Bloorview, because after speaking to other families, we realized that there was a lot of really good work being done here and a lot of innovation being done here. And I just wanted to be a part of it. 

Dr. Heidi [00:02:47] That's amazing. So, Adrienne, you pointed out that you have two daughters, focusing on the daughter who's been diagnosed with ASD, I want to find out before she was assessed was ASD on your radar? 

Adrienne [00:03:01] No, no, no. Well, I shouldn't say that. It wasn't before we started talking to the pediatrician who ended up diagnosing her. The process of diagnosing her took a number of visits. And when we first saw her and she observed my daughter Amira, and we had a long chat and we were in the office for, I would say, two hours. And at the end of that conversation, she posed the idea that we will need to query autism. And so that was the first time I had ever heard the words. 

Dr. Heidi [00:03:40] First time. 

Adrienne [00:03:40] The very first time. And that was scary. And then at that point, I started thinking, connecting the dots and things started to make more sense. But prior to that, no, we'd thrown around is she deaf, you know, that, to be honest, was the only only specific thing that we could come up with because of her lack of attention to her name. So, yeah, before that meeting with the pediatrician, no. 

Dr. Heidi [00:04:08] It wasn't on your radar at all. Can you tell us about going for that assessment? What were you expecting and how are you feeling? 

Adrienne [00:04:19] But to be honest, that assessment I was excited about because her case was one of those that was subtle and she was and she was young. So I heard many, many times, oh, well, she's only two, you know. It's you know, it's hard to figure these things out in kids so little is what I was what I was told when we were in our primary care setting. But I knew in my gut something was different. She was our second child. So I appreciated the fact that, yes, kids are different. But she just seemed more different than I expected. And that and other people around us were noticing little things and cocking their head and going, you know, different. And so I had to push quite hard to get the referral from our primary care to the pediatrician, because even the primary care physician wasn't so sure that the referral to the pediatrician was necessary. So I was actually kind of excited to get to that pediatrician thinking like, OK, now, you know, hopefully we're working with someone who is really going to dig into the subtleties of things. That changed when I hear the word autism. But initially, I was just happy to get to someone who was going to kind of get into the nitty gritty. 

Dr. Heidi [00:05:32] Right. Yeah. So you said like that, so it changed the excitement. What did it change? 

Adrienne [00:05:39] To fear and feeling overwhelmed, when I heard the word autism. Mostly fear initially, because what I knew of autism, which was little to none, and what I knew of my daughter didn't seem to correlate. And so I thought, well, I know how, what...and it was just a scary proposition, to think that what I knew of autism and what I knew of my daughter would be correlated. 

Dr. Heidi [00:06:11] Yeah. You mentioned so in your gut you said you felt that there were differences. What were you noticing? 

Adrienne [00:06:20] She was very independent, which I was grateful for, because my kids are 16 months apart. So it was difficult to manage two babies. But she just was was, I think, overly so, overly independent. She didn't always respond to her name, which was pretty clear, in hindsight, and this is only in hindsight, I can remember when she first stood up. I got super excited and I looked into her eyes to see just to, you know, to gesture to her, oh my goodness, and to share that excitement. And I remember distinctly her not making eye contact with me and not being terribly excited about the fact that she'd stood up for the first time, and feeling a little bit disappointed, but thinking to myself, oh, she's different, quote unquote. Yeah. If you... and now that I know the things to look for it, she didn't point when she was a kid; there were a number of things that I can say now but initially it was that, you know, lack of response reliably and just being very independent and very sensitive. 

Dr. Heidi [00:07:29] Right. And it's interesting because you're pointing out, like you said, like subtle differences. Right. So that you, as a parent who is with her for a long period of time, might have been noticing, but going to your primary caregiver who's seeing her for like a short period of time might not have noticed. 

Adrienne [00:07:44] No. 

Dr. Heidi [00:07:44] Yeah. What kind of support did you have while you were, you and your family were waiting for the assessment and then while you were actually going through it? 

Adrienne [00:07:53] Mm hmm. While we were waiting for the assessment we were given resources in the form of documents to read, Web sites to go to, books to read. But that was the extent of it. I did my own research and I didn't do much reaching out at that point because we were so confused as to whether this was the direction we were going or not. So there wasn't a whole lot, to be honest. I wish there had been more, but that was it was, you know, some paperwork, and you know, your appointment is in four months. And, you know, that body will be better at teasing out whether this is where she is or not. 

Dr. Heidi [00:08:48] It sounds kind of like being in limbo. 

Adrienne [00:08:51] Yeah, yeah, absolutely in limbo. Yeah. And it's a difficult thing to manage emotionally because you, it's hard to talk about whether your kid may or may not have autism, because then you have to wrestle with disclosing that to people and whether you're ready to even have that conversation about if they are what that would mean and how that, you know, whoever you're disclosing it to might react to that discussion. So we, my husband and I found that we didn't really talk much about, you know, the concerns and the confusion and the stress that we were having that was associated with does she? Because we thought if we're going to have this conversation with people, we want to be sure. Because it felt like that cat that if you let it out of the box, you can't get it back. 

Dr. Heidi [00:09:48] Yeah. Right. In some ways, it kind of makes sense how you and your husband were like this island together. 

Adrienne [00:09:54] Yes, very much so. I think there was one other, my very best friend was the only person that I kind of spoke to about the query of autism before we got the diagnosis. And yeah, I just, I think I, I hadn't, it took a long time to accept it and to appreciate it, and so when I first learned of the query, it was definitely not something I could speak about easily with anybody other than my husband and my best friend. 

Maureen [00:10:27] How long were you waiting? So that period between we're going to refer you to someone who's going to look into autism and when you had that very first appointment. What was that wait? 

Adrienne [00:10:41] It was about, so from my primary care to my pediatrician it was about three months, and then it was another two months until the pediatrician did the diagnosis. 

Dr. Heidi [00:11:00] So really like kind of half a year. 

Adrienne [00:11:02] Yeah. Yeah. It felt like a long time. And it felt the longest when we knew that autism was a query, because then you start reading and you look at the Web sites and you know, you you you hear about the research associated with ABA. and how much you're supposed to do, and at what intensity, and how if you do it earlier you're more likely to have better results; and so every day feels like you are letting go of opportunity and the guilt associated with if I don't do this now, you know, I may significantly affect her future that weighs heavily on parents. That was, that was, those days were the worst when we knew this may be her fate and feeling as a parent like, I wasn't doing what I was supposed to do to get her what she needed. 

Dr. Heidi [00:11:58] Yeah, I can imagine, that would be hard. Adrienne, what do you remember about when you actually heard the words being said that that your daughter was being diagnosed with ASD? 

Adrienne [00:12:14] When she was being diagnosed with ASD, I know it sounds really strange, but I was relieved because we'd had a discussion about, you know, it could be ASD, it could be global developmental delay, which was explained to me as a constellation of delays that we don't really understand and don't have really specific treatments for, and that seemed a scarier place to be for us. So, and as I learned that autism may be what she ended up having, you know, I started reading and checking the boxes, and in my mind, it didn't make sense that it would be anything other than ASD once I had read a lot and looked and kind of pieced things together. So at that point, I was very relieved to hear it. When I was first introduced to me I was incredibly scared and upset and sad and angry, and like a myriad of emotions, because it was something I had never thought about before and didn't know I didn't have any personal relation to someone with autism spectrum disorder. So it sounds, I'm embarrassed to say that, you know, the movie Rainman was probably the only reference that I had to autism, which is horrible, but that's the way it was. So back then, it was very overwhelming. 

Dr. Heidi [00:13:48] Yeah. Yeah. You really I mean, it really sounds like it was such a mix of emotions. But at the same time that there was some sort of like relief in knowing, right? Versus the unknown. 

Adrienne [00:14:01] Absolutely. 

Dr. Heidi [00:14:01] Ruling out other things. And and then if it's not easy then what is going on. 

Adrienne [00:14:06] Yeah. Yeah, absolutely. And knowing that there, you know, there is somewhat of a path that's been paved. So there are, you know, reasonably well organized treatment protocols that we can look to. And yes, we will have to choose from a myriad of different options. But at least there is is something out there with a label and a treatment associated with it. 

Dr. Heidi [00:14:30] Yeah, I always, one of the things that always strikes me is that you get a diagnosis as a parent, and that's not necessarily the end of your journey; in some ways that's the beginning of a whole other journey. 

Adrienne [00:14:43] Yeah, it's the very beginning of a very long journey. Yeah.

Dr. Heidi [00:14:46] Yeah. And we're gonna get into that a little bit more. If you were Adrienne, if you were able to go back to that clinician that assessed and diagnosed Amira, your daughter, is there anything that you would want to tell him or her today that might help other families in future assessments? 

Adrienne [00:15:11] The woman who did our diagnosis, I think, did a wonderful job because she allowed for the time in her office and she allowed for the time between sessions. We had three sessions with her, three elongated sessions with her. One was the initial evaluation and then the discussion of this is where, this is where I think we're going. The next ended up being the actual diagnosis itself. And then the third at her insistence was my husband and I coming back two weeks after the diagnosis to have a debrief. And I remember her saying very clearly, your husband has to come too, and I'm one of those mommies who just you know, I think I can do it all, and now I know I can't; but I had, you know, initially thought, no, no, he's working, he won't be able to come, he doesn't need to come. She said, no, no, no, he needs to come. And we had a discussion and there were tears, and but I you know, was much, we were much better able to understand what our plans would be at the discussion at the third meeting. So I, I know it's you know, it's expensive to spend that amount of time and it is, you know, intensive, but it's, I think it made the difference in our ability to get going. Instead of be frozen in, like in fear and grief, which there was a lot of fear and grief period, but we weren't frozen in the way that I think we could have if it was a very kind of down and dirty, in and out, here you go, kind of process. 

Dr. Heidi [00:16:56] And so there is real value in having your husband come to that session. 

Adrienne [00:17:00] Yeah, there was. There was, yeah. There's only so much you can relay after the fact. You being there's there's, you know, being there, there's so such value in that. 

Dr. Heidi [00:17:12] Yeah. And what would you tell a parent who's currently waiting for their child to be assessed. 

Adrienne [00:17:20] I would say as much as you can and feel comfortable, to read and to become familiar with the with things that you might start to appreciate in your own child, because some things are so subtle, and the question, when you get to the office and you're having the assessment sometimes the questions they ask are questions that you may not have thought to think of or look for, and so if you haven't done that pre work, sometimes the questions can feel that you just you feel badly because you haven't looked for those things. You haven't thought of those things. And sometimes you can come up with the answers. When someone asked me, did she point? I stopped for a moment. Then went oh, goodness, no, she didn't point. But there are other questions where I thought where I knew because I'd been looking for them and either had seen something or not seen something, that I was better able to give information that would be helpful to the diagnosis. So I think just knowing what to look for and kind of being your own detective with your child helps and then it you know, it helps to appreciate that maybe some of the things that are more difficult about the behaviors associated with autism are not necessarily just because your kid is a quote unquote bad kid or a hard kid, or it's part and parcel with a lot of the difficulties that kids have with autism. So tantrums or self injurious behavior, as soon as I started to learn that, that wasn't just because I didn't feed her the right food at the right time it was because you know, she was overloaded with a flood of emotions because of her inability to communicate at that point.  There I took some of the pressure off myself to think that I could just change everything or I wasn't parenting properly so that that that was helpful. And that all came was just kind of learning and reading and taking in as much as I could over time. 

Shawn [00:19:22] So you just heard a clip taken from a conversation we had with Adrienne in an upcoming episode on receiving an ASD diagnosis. If you'd like to hear more from Adrienne, please join us in Episode three, where she shares more about her experience as a parent of a child with ASD. And she also discusses how her daughter presented when first getting the diagnosis and how her daughter and family are doing now. We hope you continue to join us as we further explore the process of receiving an ASD diagnosis and also the journey that follows. 

Dr. Heidi [00:20:00] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorview.ca.

Episode 2: Getting to know you & your child - What does getting an ASD assessment mean?

Dr. Heidi [00:00:11] Welcome to ASDengage, the podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist. 

Maureen [00:00:24] I'm Maureen Mosleh, a psychometrist. 

Shawn [00:00:26] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode we will present a topic that reflects concerns brought forward by families we work with. 

Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process. 

Maureen [00:01:01] Welcome to Episode two of ASDEngage. In this episode, we'll be discussing what parents can do to prepare for an autism assessment. Dr. Heidi, in your experience, why is this topic so important? 

Dr. Heidi [00:01:12] I guess because a lot of the times, like parents are coming in and they might know that they're coming for an ASD diagnosis and they might not. So they're coming after being referred from their primary health care provider or doctor or pediatrician, and the information that they have to prepare them can be really variable. So we want to kind of even out that playing field in terms of what parents know and what can parents expect when they're coming for an assessment here at Holland Bloorview or anywhere else.

Maureen [00:01:46] Okay. So in this episode, then we're also going to talk to Dr. Sharon Smile, a developmental pediatrician here at Holland Bloorview. So thanks very much for joining us, Dr. Smile.

Dr. Smile [00:01:58] Thank you. I'm so excited. 

Maureen [00:02:00] I'm glad. Alright, so first off, we'd like you to tell us about what you do here at Holland Bloorivew. 

Dr. Smile [00:02:04] I have the best job in the world because I get to play with kids and I meet wonderful families, really exceptional parents and kids who challenge me to be better each day. And it's called a developmental pediatrician, which just means a physician who specializes in children and youth who have developmental difficulties, such as a wide range, autism spectrum disorder, cerebral palsy, cognitive impairment, ADHD, and who might just have a difficult time managing their environment. 

Maureen [00:02:43] Okay, perfect. Thank you. So I kind of want to jump in a little bit and talk specifically about working with children with autism. Why is this a field that you chose to specialize in? 

Dr. Smile [00:02:57] You're going hard, Maureen. 

Maureen [00:03:00] That's the point. 

Dr. Smile [00:03:01] So I am a pediatrician by training, and I think it all started when I was a resident in Jamaica at a University Hospital in the West Indies and in our child development clinic we would see kids who present with many different developmental concerns, and in our setting we're a resource limited country, and we'll see kids who had difficulty speaking, just functioning, and then they had these additional factors or symptoms such as hand flapping, difficulty with behavior, transition challenges, and in reading up about what could this be, we learned that autism spectrum disorder defined or defined those symptoms beautifully. But the problem is that when we look at intervention and most of the intervention and research around that comes from resource rich countries like North America, the treatment would be behavioral therapies, occupational therapy, speech language therapies. And in Jamaica, we don't have a government system similar to Canada that where kids will have access to those services. So as a student, I'm wondering, OK, what can we do for our communities and our kids here in Jamaica? And I think that was the reason why I decided I need to find a way to understand autism a bit more and try to see if we could come up with clinical care that could be applicable to countries that may not be as resource rich, like in Canada. 

Maureen [00:04:33] Parents and kids are used to going to visit with a pediatrician or their doctor, and in those situations, they usually have a sense of what to expect. But for many families, when they're referred for an assessment here at Holland Bloorivew, they may not really have much idea of what that entails. So tell us, what are we talking about when we talk about an ASD assessment? 

Dr. Smile [00:04:55] So when we look at autism spectrum disorder assessment, I tend to move away from being very rigid in stepwise process. What we do here at Holland Bloorivew is what's called a developmental assessment. But what I want to do is get to know you, your child and some of the skills that they're really good at doing and things that they're not good at doing. And in walking through with that parent and child through their journey, and we usually start from getting some information from a referring physician, other people who are involved in their care, their teachers, daycare providers, or any other subspecialty that might be involved. Just to get a sense of what has happened before and then when they do, when they come to their apartment, here at Holland Bloorview I walk through from conception to present. And what I try to do is paint a picture of that child's development to see where things were going really, really great, and then when things started becoming problematic, because when we we look at autism spectrum disorder, I haven't found a child who just presents with ASD alone, there's this comorbidity that exists, and what I mean by that, there's other things that are happening with autism spectrum disorder. So there are other medical challenges that occur. There might be cognitive challenges that occur, and so you want to get that holistic picture, so when kids come in we walk through that journey from neonatal period straight on til their current setting, and I try to get a sense of where they're functioning in their main areas, whether or not it's communication skills, what receptive, expressive, looking at non-verbal skills, I look at their social skills, behavioral profile, motor skills, and then what I try to then do is present that case to parents who say this is where they're functioning compared to other kids, their same chronological age. And if there's a deficit then I'm trying to figure out, why is there a deficit? Are there risk factors there that are causing challenges? And if the symptoms match that categorical descriptor that we get in our DSM five diagnostic criteria for autism spectrum disorder then a diagnosis will be given, especially if those impairments impact on function. And the biggest role for kids right now is to have fun in their environment as well as go to school and learn. So if a child is not engaging with a family or having fun or doing successful at school, then that discussion is had with parents to then see whether or not autism spectrum disorder helps, to for others to understand, as well as the parents to understand why that child is struggling. 

Shawn [00:07:35] So, Dr. Smile. Parents come in and there's a huge variability in what they might know about autism spectrum disorder. So how do you describe what it is? 

Dr. Smile [00:07:46] I'm very visual, so I use a lot of examples by drawing to help families understand what autism spectrum disorder is. I start out by saying it's a neurodevelopmental disorder, which means that it's brain based, that's where there's difficulty, and it's manifested in challenges in many many different areas in a child's ability to function. The primary ones are communication. So it impacts on how your child communicates with others,  with family members, as well as try to get their thoughts from in their brain, out through their mouths, so that others understand what they're feeling and how they see the world or view the world. The other component is that social skills component, which impacts the way they relate to others, the way they play or engage, the things that they're interested in. And then a larger component looking at different behaviors, or the way they respond to external stimulus, such as sound or light, tactile, so touch, smells or things how they prefer things being in their environment as well as difficulty with transitioning. I really explain to parents that this is not a disorder where I can do a blood test and identify that this is autism. It's a term and you'll hear it a lot in the literature construct, meaning that clinicians as well as parents come together to say that if you have this cluster of symptoms and it impacts on functioning, then the term we use is autism spectrum disorder, and the term is meant to be a spectrum as that word says, where kids could have some impairment in one area and more impairment in other areas. So when I sit and speak with families, I'll draw a circle of each of the areas to see how impaired that child is, and mapping out how significantly impaired that child might be in one area but has amazing skill in other areas. And what we try to do is then map or match intervention to help that child function or limit or decrease the level of impairment in each area that's been affected. I try also to let parents, it's really hard for parents because whenever I do give a diagnosis, there is once we use that term autism spectrum disorder for some families, they're happy to hear a term. Now they have a reason why. But then there are other families who, after hearing that term, they hear nothing else. And so I always say that our understanding of autism spectrum disorder is evolving and it evolves by information that we learn from adults who are on the spectrum or youth who are on the spectrum and how they define themselves or see themselves as being very productive contributors to our economy and our society which they are, and for those who don't have a voice trying to look at the things that they do that are just exemplary and build on that. 

Dr. Heidi [00:10:58] I like the way you talk about using the visual because it really gets at that sense that it's not like a necessarily black and white diagnosis. 

Dr. Smile [00:11:06] Or static. 

Dr Heidi [00:11:07] Or static. Yeah. And that it really like it conveys that idea of a spectrum. Right. That kids present differently. 

Dr. Smile [00:11:15] They do. Yeah. 

Shawn [00:11:16] So back to the assessment process. Can you tell us about the steps involved? 

Dr. Smile [00:11:22] They come to us for this assessment, but it's a two way street. We benefit so much because many things that are not necessarily written in the text we're seeing in our kids. And so I learn each day not to be rigid in the way I think and in the way I assess kids, but to be open to their perspective. So the developmental process will include a history, looking at a general medical developmental profiles and looking at other medical contributing factors. We do observation of the child just seeing what do they do when we don't put any demands on them. And we do a physical examination, and then we'll also support our overall formulation by doing diagnostic testing or standardized testing, which is also play based. Or we may also involve other allied health care providers, such as a speech language pathologist if we need to get a better sense of receptive and expressive language. We'll also collaborate with our psychologists if we're concerned whether or not cognitive impairment might be a comorbidity or impacting on that child's, our understanding of that child's development, just to get a holistic picture and a bigger picture. So for our younger kids, they may not necessarily do cognitive assessment, whereas it will be important in an older child as academics is a very big challenge, and an important target, and outcome measure for many families. 

Maureen [00:12:52] And I don't know if we want to talk about Dr. Keifer, how does that process, does that process look any different when children come to you for an assessment? 

Dr. Heidi [00:13:03] That's a yeah, that's an interesting question. So, Doctor Smile highlighted at the beginning how she's a developmental pediatrician, and so when a child is going for an assessment with a query of ASD a family might be seeing a developmental pediatrician, they might be seeing me or a psychologist, or they may be seeing a nurse practitioner as well. So there's a small kind of body of professionals that can actually make that diagnosis. And oftentimes it's up to our intake department to decide, like, which professional might be best suited depending on the age of the child and the observations that have been noted in terms of like strengths and challenges. So a lot of what Dr. Smile highlighted in terms of collaborating with other professionals potentially is speech language pathology would be included in the psychological version of that assessment. A lot of times we are also doing the the cognitive piece as well, although we tend to be a little bit more tentative in our conclusions about the cognitive piece, because we don't really start to think about that kind of development, like thinking and learning skills really stabilizing until the kids are getting older. Lots of factors go into that, right? Like, how much exposure do they have to kind of like enriching activities? How much how much are they exposed like language rich environments as well, and so a lot can really change, especially in those first five years. So we might, I would like to describe it with parents as is we're gonna give you the results of you know, your child's thinking and learning skills, but it's best to think about it as a snapshot in time. It's like we're taking a picture and this is dated this particular date, but this can change later on, and it's really important to follow up. So one of the benefits is that we can kind of put a little flag out there to say, like monitor this child's development over time to make sure that they're there on a good trajectory. 

Maureen [00:15:04] Oftentimes you have parents that come in and they'll say, oh, no, my child doesn't behave like this at home. They never do this. You're seeing something completely unusual. And so it's very hard for them to buy into a diagnosis because they think they're seeing a behavior that they haven't recognized at home. Is it helpful, like so there's a couple parts to this question, is it helpful to ask them to bring videos? 

Dr. Smile [00:15:26] I've had a client who was, which had different challenges or behaviors during the assessment and parents were saying this was like a new environment for them, and this is not how Johnny worked, um, behaves at home. And as I said our assessment is a perspective taking type of assessment, right? It's your perspective, parent's perspective, teacher's perspective and putting that all together and trying to figure out what's really happening. But the most important perspective is a child perspective. So I would say, OK, let's do a video when he's at home, when there are no demands placed on him, or we'll do video conferencing using OTN to see what Johnny's doing in his natural environment. And so we could observe. And this is why I like using the playroom often because the playroom is fun, not stressful, there may be other kids there. And I like just observing kids to see what do they do on their own when I'm not trying to prod them or giving tasks for them to do. And I think in that moment and if parents are able to also to observe this from whatever mechanism to see how their child engages with others or when they're brought in a room with so many toys, as Heidi said, you know, blocks would they go to the cars, and if they do go to the cars, what are they doing? One thing we have to be mindful of, even though the autism spectrum disorder, it is categorical where you check off lists of what task a kid is doing or not doing or atypical presentation, we sometimes forget the quality of skills, right? So in the assessment, we're not only looking at presence or absence or differences in their presentation, but we're looking at the quality of that skill. So a child could have eye contact, but he is one millimeter away from your face. Now, that may not be an appropriate presentation or socially accepted engagement. But if I had a checklist, he did make eye contact, but eye contact was atypical. 

Dr. Heidi [00:17:40] I've also had some parents who they just naturally brought in videos to show me they were like wanting to kind of give me a taste or a glimpse of what it's like at home and stuff like that. And in some cases, it helps you see what parents are paying attention to and what maybe they value. So I have a lot of parents who come in and they're very excited about all the child's rote skills. They know the alphabet, they know the numbers and stuff like that. And they'll kind of like and they might not be able to do it maybe in the one hour that I'm seeing them or however long and in kind of like a different setting where there's lots of other factors and affecting how engaged they are with me. So they'll show me what's going on at home. And, yeah, I'll be able to kind of see and reinforce oh, yeah, like I can see those skills are happening and stuff like that. I wonder, like, you know, a lot of times when kids are that age too, they want to share that experience. So they may be looking back to you, trying to get you involved in the activity. And I noticed, like your son or daughter, like they seem to be doing more on their own. Right. And it kind of open up at this discussion, too, to maybe even broaden like, well, what are they noticing. Right. That they might not have been, like, so focused on before. 

Dr. Smile [00:18:56] Right, and then you have that conversation of the function of that skill. Right. So while great that the child is able to do it, but then how useful is it in engaging others and expanding that skill set? And as said, it's important to have conversations with parents. It's not that I'm right, you're wrong, it's like, okay, this is what's happening, what could this mean? And then what's the next step? 

Maureen [00:19:25] So video sounds super helpful, though, too, because the other thing that I think I also captured is that it also gives you a segment of the family piece. When you're saying this is what the parents are bringing to me and saying, look, I'm so proud of my child can do. And it gives you a glimpse into that family situation. And it's nice to be a tap in to that. Like, I really. Yeah, I love that idea. 

Dr. Smile [00:19:49] Yeah, and acknowledge it. Right. Because remember, as Heidi said, we only see a snapshot. Yeah. Right. So we may not be able to see those great skills that are happening within a home environment. So we're able to go, oh my goodness, yes, he he does speak. He does use words. Right. Whereas when he's in our assessment, he decides not to speak because he's so overwhelmed or anxious. Right. And I think it honors parents as well because they're giving their history and he's not doing it at the time, they got a little bit frustrated. Please do this. And if we saw a video, then we could go, yeah, that's correct. Good. 

Maureen [00:20:27] I kind of wanted to ask both of you now, parents are bringing in a lot of different emotions into this assessment. What are the ones that you often see? To you first, Dr Smile. 

Dr. Smile [00:20:44] Fear. And, just this uncertainty of that child's future. I think those are the two biggest emotions that are being expressed and sometimes it's expressed in behavior as opposed to verbally stating it. 

Dr. Heidi [00:21:05] OK. And you, Dr Heidi, what do you see? 

Dr. Heidi [00:21:09] Yeah, I think I would I would agree with Dr Smile. Those definitely are the ones that I see most commonly. I think also it depends on kind of like what their journey has been up until that point. So I specifically work with kids under five, and their background story can really differ. So we have kids who might have been going to daycare for a few years, they might already have been involved in other services, like Early Abilities, which in Toronto is like not for profit speech intervention service that parents can access. And so in that situation, there's lots of eyes on a child, right, so families might be coming in and they kind of have this sense of like, OK, in different settings this is how my child is being perceived, right, and and this is like a lot of times there are concerns that have been brought up to them. So they have kind of a full picture. But then in other situations, children might not have had exposure to those same experiences. So they might be staying at home, and what have you, and there's absolutely nothing wrong with that, every family kind of makes your own choices in terms of what's best for their child, but they might also have almost, kind of like an insulated view of their child where they don't know, like how is my child going to act in different situations, right, or be able to compare it to other children their age, like same age peers, basically. So I don't know if I can actually, like, attach a label to the emotion attached to that as much as to say that yeah, parents are coming up with very different stories, which is interesting when you're thinking that the children are so young that we're seeing. 

Dr. Smile [00:23:08] Yeah, I agree with that as well. I think it depends on that journey and the family itself because on one spectrum, we have this uncertainty, anger, fear. But then in the older kids as well, where they may have seen multiple healthcare professionals and haven't pinpoint what's happening, and I see this type more so with the kids who are cognitively smart and are struggling with anxiety or peer relationships, and when when they have an assessment of autism spectrum disorder, best define what symptoms we're seeing, I've experienced families expressing relief as, OK this is what it is. Now, I can specifically target this. What supports do I need to put in place so that my child is successful? Right. And success looks differently for many families. Right. And it's to honor that success or their definition of success. And we work towards that goal. 

Dr. Heidi [00:24:09] I think also, too, like I mean, doctors, by your description of autism spectrum disorder, like was really rich. And I think at younger ages, a lot of the times I'll see parents come in and they feel like they have a sense like, oh, they're not talking yet, right. Words haven't come. So it must be like a language delay. Right. So in some ways, there's there can be a little bit of like of their own, like pre diagnosis of what's going on. And especially when you look at kind of like the checklists and stuff like that that they get probably with their primary care provider, health care provider, I should say. A lot of times, like that's kind of what they're on the lookout for. And not necessarily some of those like other areas, like social skills and stuff like that. And then you add onto it like maybe they're not in daycare. So you're not really seeing those social skills at play. 

Shawn [00:25:03] What can a parent do to prepare for this assessment? 

Dr. Heidi [00:25:07] I think anything in terms of like supplemental information. So if your child has been involved with previous assessment or intervention services and there are reports that you can bring in if there are any progress notes or report cards, if your child is in a daycare or preschool or is already in school, that can be really helpful as well. Providing consent to talk to a daycare educator or a school teacher is really helpful too.  A lot of times we will see differences like where a child acts one way in the home and then acts differently within the school setting. Right. And transparency in the sense, too, that knowing that, like, the more kind of sources of information that we have, the better for us to help kind of make a decision. Right. Or just really see like, OK does an ASD diagnosis kind of like fit the overall picture of how this child is functioning across settings? Sometimes parents are a little bit concerned and that might be just where they're at in terms of like kind of processing, like, OK, this assessment, is my child going to get an ASD diagnosis? I don't know if I want the daycare to know that at this point. And so it's it's definitely if you're a parent, it's worth having that conversation with the person who's doing the assessment with you to just to help you decide, like, OK, what are the pros and cons of of having you talk to that person? 

Maureen [00:26:40] You bring up a really good point. I think that that's really interesting because we do hear from parents that are concerned about once the label is put on my child, it's there for life. And there's some concerns around that. Do you hear that very often in the clinic? 

Dr. Smile [00:26:56] Often. And I think that falls into that fear factor. Right. Because I try to frame our assessments as: I'm Dr. Smile, I'm partnering with you right now in this moment in time to best understand your child. And at the end of that partnership, I hope to transition you to a new partner or another partner who will then continue with that support. And if it's, I think we kind of challenge, for developmental pediatrics, especially in that field, we challenge what's typically known as a doctor patient relationship. Right. I'm not it's not like a yes or no answer. And development is so fluid and variable and changes. And as stated earlier, at a moment in time, if I saw a child at age two, they may have some red flags, which we call concerning symptomatology is for autism spectrum disorder, but may not have met the criteria. But as they got older, when that social demand kicks in or their language skill has improved so much and now we're looking at a quality of those skill sets, then they may now meet criteria for autism spectrum disorder. So when you're having a developmental assessment and let's say that child did not meet criteria but had concerns, it's not like we say you don't have ASD go home. We have to honor or identify those concerns and say, OK, what could this mean, and how do we support? And it's not an all or none type of diagnosis or relationship with the parent. And I think it's a developmental pediatrics  is a relationship. And anyone who works in this field, we're building relationships with parents because coming in to do an assessment when you're talking about your child, this precious connection that you have and you have all these hopes and dreams for this child and you are identifying the challenges that they're seeing. We all see the challenges. But let's look at the things that this child is able to do really, really well, empower parents and identify that okay, it's gonna be a little bit rocky, but let's get you the right supports. 

Maureen [00:29:10] Okay. Before you came here today, Dr. Smile, we asked you to think about a family that really changed your perspective. What came up for you? 

Dr. Smile [00:29:22] Flashes. I think on my journey, I've been privileged enough to have families open their homes and their hearts and their their lives to me. And one of the most impactful relationships I've had is with a family from home in Jamaica, where I met an amazing lady, Kathy, who is who founded Jamaica Autism Support Association, which is for families of parents with kids who are diagnosed with autism spectrum disorder. And watch her son, Kyle, who is phenomenal, what they've taught me in their journey, and he's now a young adult, is that where there is nothingness, and at the time when this mom got her diagnosis or Kyle received his diagnosis, there's nowhere for her to turn. And, it was fascinating to see in the absence of something, how this mom created this new idea of parent support group in a developing country and connected  parents, and parents were so hungry for that type of support and they will travel miles for hours just to come to a meeting once a month to hear other families about what they're doing, which is really good, what things were not good or just to talk or connect. And Kyle, who is diagnosed with autism spectrum disorder, can play the piano, he does deep sea diving, he swims, he's a competitive swimmer. And I look at my own life and I stop to say, these kids teach me to be fearless and to be limitless. And every time when I come to work and I feel as if I can't do that that's too much energy, too much time, I stop and I reflect back on the Kyles, the Caleb's, the clients that I've seen, and for them to be able to come in any clinic visit and tolerate us poking or asking them to do a test that are not interested in and yet still they do over and above, then who am I? I should go over and above, and also recognize sometimes when I can't, right, and when I do some introspection and I reflect, I pause every time I speak with families and I ask, how are you doing? What are your thoughts? What supports do you have mom or dad or grandma? Because we we tend to go on and on and on and on, but some of our clients or kids with autism spectrum disorder has taught me that, yeah, there's no boundaries, but sometimes you have to pause, take a breath, like they learned a skill and you're going to keep doing that skill and then we go to the next level. 

Maureen [00:32:20] I think, too in previous conversation you had talked about the child and that you're not dealing with a child in isolation. It's like a small segment of a family unit. Talk a little bit more about that. 

Dr. Smile [00:32:36] We're all connected and our kids, when they clients, when they present to us, are not living in isolation. And when we look at behaviors, we look at challenges that they're having. Most of their presentations are formed or created by their experiences, and the experience will be within the home environment, school environment or the community. So when we're seeing kids we should always look at the other levels of engagement so that they're participating in,  family, community, school. 

Maureen [00:33:15] What one thing would you say to the parents who are now on the waitlist for an assessment? 

Dr. Smile [00:33:23] I would ask parents to look at, or identify, rather, what their child is good at doing. I'd ask them to look at what makes their child really, really happy. Because we're going to use that and leverage that for any intervention program that's been had. We focus a lot of what is missing, what is less, what's impaired. But these kids are phenomenal in many different aspects and sometimes we overlook that. So I will encourage, or rather recommend that parents pause and see what their child is gifted. Everyone is gifted in something, and if we could identify that, then we could always use that and continue to build that. 

Shawn [00:34:12] Dr. Smile, your response to that question shows that you clearly care a lot about your clients. What are some of your favorite things about working with the ASD population?

[00:34:25] I get to learn every day. I get to learn from families everyday. I learned yesterday about cosmic yoga on YouTube. This wouldn't be something that I'd go find out on my own. But learning information from each client that I could then apply to other clients. So it's this networking that happens and just the joy of being. I will tell the parents that I'm here to serve you, because that's what our job is, is to support you and to facilitate you accessing the right supports. And so my my joy in coming to work is to help. So if there's any way I could help in whatever role I have here at Holland Bloorivew or as a human being, that's what I want to do. 

Dr. Heidi [00:35:18] That's amazing. So I think we've touched on a lot of important details about what happens when a child is getting assessed for autism spectrum disorder and helping parents and families know what to expect in the process. Thanks for your insights, Dr. Smile. And I know you're going to be popping into one of our subsequent episodes on eating and feeding issues and ASD. We're going to continue some of these themes in our next episode. And we're also going to go further into thinking about what happens if your child does get a diagnosis of ASD. 

Dr. Heidi [00:35:51] If you listen to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorivew.ca

Episode 3: Getting an ASD diagnosis – Nothing about your child changes

Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiefer, a clinical child and adolescent psychologist.

Maureen [00:00:25] I'm Maureen Mosleh a psychometrist.

Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorivew Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.

Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.

Shawn [00:01:00] Welcome to Episode three of ESD Engage. In today's episode, we'll be discussing how it feels to hear from a clinician that your child has ASD.  In this episode we'll speak some more with Adrienne, a parent who shares her family's experience of receiving an autism diagnosis for her daughter. We'll also talk with Dr. Abbie about communicating the diagnosis in an effort to help our parents understand what the process might look like.

Shawn [00:01:28] Our first guest joining us by phone is Dr. Abbie Solish, a psychologist here at Holland Bloorview Kids Rehabilitation Hospital and the Autism Research Center. Welcome, Abbie.

Dr. Abbie [00:01:40] Thank you it's so nice to be here.

Shawn [00:01:42] So to start off, could you tell us a bit about what you do here at Holland Bloorview?

Dr. Abbie [00:01:48] Sure. So here at Holland Bloorview I have a couple of different roles. One of my roles is doing diagnostic assessments for young kids with suspected ASD or other developmental concerns. Those kids usually range between the ages of about 18 months and four and a half years. And in my role there, I see children and their families and provide assessment around potential diagnostic concerns. The other role that I have is running cognitive behavioral therapy groups for children with ASD and anxiety. And finally, I work at the Autism Research Center supporting a number of different research projects, looking at early intervention and early diagnosis for kids with ASD.

Shawn [00:02:38] That's great, you're a busy woman. I'd like to introduce our second guest, Adrienne. Adrienne is a mom to a daughter who's been diagnosed with ASD. Thank you so much for joining us Adrienne, can you start off by telling us a bit about your family?

Adrienne [00:02:54] Yeah I'd love you. So my husband and I have two daughters. They are now 9 and 10. My 9- year old was diagnosed with autism when she was 2 and my 10 year old was diagnosed with ADHD when she was 9.

Shawn [00:03:10] Adrienne, in our first episode, we shared a clip of you describing the pre diagnosis wait, your first appointment with the pediatrician and ultimately receiving an ASD diagnosis for your daughter, Amira. Can you tell us what it felt like when you first heard those words that your daughter was being diagnosed with ASD?

Adrienne [00:03:30] When she was being diagnosed with ASD, it sounds really strange, but I was relieved because we'd had a discussion about, you know, it could be ASD, it could be global developmental delay, which was explained to me as a constellation of delays that we don't really understand and don't have really specific treatments for, And that seemed a scarier place to be for us. So, and as I learned that autism may be what she ended up having, you know, I started reading and checking the boxes, and in my mind, it it didn't make sense that it would be anything other than ASD once I had read a lot and kind of pieced things together. So, at that point, I was very relieved to hear it. When it was first introduced to me, I was incredibly scared and upset and sad and angry and like a myriad of emotions, because it was something I had never thought about before and didn't know - I didn't have any personal relation to someone with autism spectrum disorder, so I'm embarrassed to say that, you know, the movie Rainman was probably the only reference that I had to autism, which is horrible, but that's the way it was, so back then, it was very overwhelming.

Shawn [00:05:05] And can you tell us how receiving that diagnosis changed things for your family?

Adrienne [00:05:11] You know, I think you have children and there's this boundless opportunity and boundless potential, um you just assume that there will be every opportunity in the world and that you and your child can choose any path that you like. And I think sometimes there's some arrogance of as a new parent, and I can just say for myself this arrogance of, well, you know, we can do well, you know, we can kind of go any direction we want, we can be in any environment we want, we can ... it's our choice, quote unquote, um versus being a bit more sensitive to who your child really is, what...what makes them happy, what brings them joy, what is stressful for them and not stressful for them. And then structuring your life based on that versus what you have decided you think you want to do or what you think you want your family to do. So we've moved from a place of thinking we could kind of perscribe the way our family would move, and move to a place of OK, hold on a second, we don't really get to decide how our children are going to develop. We need to learn what works for them and where their strengths and weaknesses are and how we can support them and work with them and see the joy that they see and and really find joy in that instead of looking for the joy that we had decided where it's going to come of raising these children.

Dr. Heidi [00:06:58] So I want to know for you what's the difference between you as a pre diagnosis mom and a post diagnosis mom?

Adrienne [00:07:07] A big one. It's, I mean, it's almost embarrassing to say to think about kind of my my arrogance, to be really honest, prior to not appreciating kind of the diversity of development in children and to not appreciating that children and especially kids with neurodevelopmental disorders have these unique gifts deep down in there that when you get to, especially if it takes a long, hard road to get there, are incredible, so satisfying and gratifying as a parent to see kind of blossom and also bring such depth to people around them into the world around them, that I think is tough to see when kids don't struggle, you know? And so now I you know, I see Amira overcoming things, and the littlest success is a really big deal for her and it's a really big deal for me, and that's so satisfying. But I also see other people who initially may have cocked their heads at her differences, start to appreciate the nuances and the the little crazy quirks of her, despite the fact that, you know, there's still things that she struggles with and for them to start to see and appreciate those things, and I think to myself, had that had she not been kind of our teacher, we would not have learned the lessons and I would not have learned to look for, you know, those really simple characteristics in kids that just bring that goodness in them had I not had a kid that struggled. So I think I'm a more compassionate, reflective person. And had I not had had Amira, I don't know that I would have found any other way to get there. So at this point, granted, seven years later, her, I, I wouldn't trade it for the world. But that's not to say that when she was first diagnosed, I wouldn't have told you that I would have, you know, like to close my eyes and pretend this had never happened. And had you given me the chance to just make this not so, I would have jumped up and said, please, let's do it.

Dr. Heidi [00:09:57] Yeah. Yeah, it takes time.

Adrienne [00:09:59] Yeah.

Dr. Heidi [00:09:59] Yeah. So, Dr. Solish, like, we've we spent some time talking to Adrianne about what it was like for her to to get the diagnosis, to recieve that information. What's it like for you on your end when you're giving that diagnosis?

Dr. Abbie [00:10:17] It's such a good question. You know, I think, what it's like depends, again, a lot on each family and what the family has brought to you in terms of their readiness to be there and their experiences to date. So I feel like a whole bunch of different emotions come up for me when I'm providing the diagnosis, depending on the pathway to how I've gotten to the diagnosis. So I can expand on that and just give you a little more information about what I mean. But I think for me that there are some parents who come in and they're very, it's very clear to them why they're there, that they're really the ones driving this ship and saying, I went to my doctor and I'm concerned and I've been doing this reading and this is where I'm at, and what do you think? Please validate my experiences and my challenges that I'm having. And I feel like in those moments, the diagnosis, I can feel for the parents that there's, of course, all of the emotions that only a parent can describe best, as Adriienne just has. But there's also that sense of like I was right. My concerns were taken seriously and it's been validating for me to engage in this kind of process. So in that case, for me delivering the diagnosis, I feel like it's a bit of an easier job because I'm very easy to align with the parents. I think there are some parents who come in and aren't really sure how they got there. You know, it sounds like for Adrienne, there was a long conversation with a primary care physician, for some of our families that hasn't been translated to them. So they're unsure why am I here? You know, I think that my child has a language delay, I don't see any need for this ongoing assessment, there's a history of late talkers in my family. And I think for those families setting up from the beginning the expectation of why they're there, what I'm looking at, what we're doing and really building that rapport and taking them along the diagnostic journey, from my perspective, is is really important. And in those cases, you know, I think my emotion in providing the diagnosis feels a little bit different because I know that that readiness and that understanding of why they're there and what the experiences have been is a little bit different. So I think for me, you know, obviously it's my job as a professional to remain cool, calm and collected. I think it's also my job as a professional to communicate that diagnosis with warmth and empathy and and compassion. But I think what I'm feeling deep down inside really depends on what emotions a family has elicited in me along the little journey that we have gone on to get to that point.

Dr. Heidi [00:13:06] So question for both Dr. Abbie and you, Adrienne, and maybe we'll start with you, Adrienne; so kids and parents and families are coming in and there's a possibility of feeling a bit intimidated when you're working with a developmental pediatrician or you might be working with a psychologist or at Holland Bloorview a nurse practitioner, who is the expert during the assessment process?

Adrienne [00:13:34] (Laughter) I I would say that that the parent and the family is the expert because they have the most experience with the child. And that as a family, you should feel confident about that. And also, I would like to say, because it's true in our family structure that that siblings often can be experts in this area. And so Amira has an older sister, Alyia, who could likely have given most, if not all, of the information to clinicians about what she observes about her sister on a daily basis. So I think regardless of their title, the people who spend the most time and are most focused on a child are the people who are probably best able to speak to their realities and therefore the experts.

Dr. Heidi [00:14:28] Yeah, that's so interesting to think, like you mentioned, that there's like not a big age difference between Amira and her sister, Alyia, and yet Alyia is like a great reporter.

Adrienne [00:14:39] Absolutely. Yeah. Yeah.

Dr. Heidi [00:14:41] And what about you Dr. Abbie who do you think is the expert during the assessment process?

Dr. Abbie [00:14:47] I couldn't agree more with what Adrienne just said. It's really my approach when working with families that one of the first things that I want them to know is that I have expertize and training in child development and in early diagnostic and diagnostic questions. But it's really a collaborative process between a professional and parent. And parents really are the experts on their children. You know, we are getting such a small window into the life of a family and a life of a child during our assessment. And I as a professional and as a parent am so aware of how different a child can look in a clinic setting than what they may look like out in the real world, be it at home or in the community or at a childcare setting. And I think our only way to reliably access that information is through parents. So I believe really strongly that in setting up the initial discussion with the family, that they need to know that they are an equal player in this assessment process and that they are the experts on their children and that this assessment can't happen without them and can't happen without their insights and their observations. And so I think it's a true partnership and a true collaboration, and I want parents to feel empowered and confident that their knowledge of their children is an integral part of the assessment process.

Dr. Heidi [00:16:10] That's amazing. Another question for for both of you as well, so and again starting off with Adrienne, in some assessments, well, so thinking about some of the assessments that I do and this would hold true for for Dr. Abbie as well, we will talk to day care or school teachers. And one thing I've consciously changed about the discussion with those individuals is that I start by asking about what the child's strengths are. And sometimes it's interesting because sometimes the teacher is thrown a bit because they're often used to being asked about what are the delays or what is going wrong with the child. And it's really easy to fall into thinking that assessments are focused on deficits or weaknesses. And I'm wondering, starting with you, Adrienne, how can that perspective be shifted do you think?

Adrienne [00:17:03] Yeah. That's a tough one. Because as a parent, I think you're naturally stressed about what isn't happening and less focused on what is happening. And I mean by default, you're you're interacting with health care professionals, because you need to know, you want to understand the things that in your mind aren't right. Quote, unquote. And less inclined to spend time talking about what is going well. But I mean, I can say now, being what are we seven years into this, that that is necessary and that helps put into perspective the child being a whole person and not just a constellation of things that are wrong with them. But I can say that naturally it was it was hard to go there because I felt like I didn't want to spend the time talking about the things that were going well, because I was so torn up about the things that were, quote unquote wrong. And I wanted help to again, quote unquote, change the things that weren't that weren't typical. So it's hard to do.

Dr. Heidi [00:18:25] Yeah.

Adrienne [00:18:26] And I think I love the idea that the health care providers are trying to nudge us in that direction. But as a parent who is in the initial stages, I remember that feeling really uncomfortable.

Dr. Heidi [00:18:41] Yeah. So yes there really is like a trajectory that you're talking about. So there is a period maybe when you are kind of focused on more of what's not happening.

Adrienne [00:18:51] Yes. Yes. And then as I think as you appreciate the strengths in your child and feel better capable of managing, then you start to appreciate the really beautiful things about your child. But that takes time.

Dr. Heidi [00:19:13] And for you, Dr. Abbie, how do you think that perspective can be shifted?

Dr. Abbie [00:19:20] I agree with Adrienne that it's it's probably challenging for some families to really be focused on the positive when you've been brought into an environment that inherently is anxiety provoking and scary and challenging, and like Adrienne mentioned, the reason that you're there is because you or someone else has expressed concerns about your child. I you know, I, I think it is important and I always make sure that I ask parents, you know, what do you see as your child's strengths, what seems to be going well? And even if that's not the thing at the forefront for families during the diagnostic process, I really make sure that in my feedback with parents that instilling that hope and that optimism and that positivity is a piece in the diagnostic process. So, of course, there's the news of receiving ASD, and I really think the way it's delivered that I, or what I strive to do in the delivery of the diagnosis is to help families see that this isn't the end, that there is so much that you can still be hopeful for, while simultaneously recognizing that for some families, the news of the diagnosis can be really devastating and really overwhelming and really scary.

Dr. Heidi [00:20:35] Yeah, it's so interesting. We're talking about empowering, empowering the parents because it sounds like you're you're also really conveying like like a sense of agency that parents, like, can do stuff and that they've been doing stuff that's that's really been helping their child along the way as well.

Dr. Abbie [00:20:52] Yeah, I find it actually, you know, every feedback that I do is different because every family that I need is different. Every child is different. But one of the things that I really do want parents to leave with is that sense of empowerment, knowing that they're making good choices. I mean, just by being brave enough to receive, you know, a referral and be able to show up for that appointment and sit in the office in front of somebody and talk about what's hard for your child, that takes courage, and there's often situations where other people are saying he's young, I mean I see a lot of really young kids, but he or she is young, you know, it takes time, she'll talk, don't worry about it. And I think just by parents following through and saying, no, I'm going to go through with this process and I'm going to go through with the assessment. I think that takes courage. And I think that parents are really making a good choice for their child, and I think they need to know that they've that they've made a good choice just by being there.

Dr. Heidi [00:21:49] Yeah. And that comment about helping parents to see kind of like the bravery and the choices they they've made, I think that really ties back to what you were saying earlier, Adrienne about like having to trust your gut, right?

Adrienne [00:22:01] Yeah. And and take in but filter opinions of people who may not spend as much time with your child as you do, and who may have not have as much information as you may once you start to look into the diagnosis of autism. Yeah, I've I've heard so many times, I'm I'm sure she's just the quiet one, you know, she'll speak eventually. Oh, you're older one is the outgoing one, she's just the shy one. So it took a little a little time, but also some conviction to say, OK, you know what, but I've I've done some reading, I've interacted with professionals, I'm seeing these things that are subtle and that might not be apparent to everybody, and I'm going to trust that because I've spent the time and I'm connected to people who have spent the time to appreciate these these little nuances.

Dr. Heidi [00:23:02] Yeah.

Dr. Abbie [00:23:03] And I always want to say to parents, you know, you are the one that knows best. I mean, at the end of the day, parents really do know best and they are the ones who spend the most time with their children. And I think any good professional is really going to take into account first and foremost, first and foremost, you know, what is the parent sharing? What are they disclosing and and what have they observed? Because I've heard too many stories of parents who said I you know, I've gone to my doctor countless times and I've mentioned the language delay or I spoke to this person and they said, oh, just wait and see, just wait and see. And I think there are many parents out there who are advocating for these types of services for their child and to be able to get an assessment, and so I think for those parents, it does, it take it takes a lot of strength, strength and it takes a lot of conviction to be able to say, I'm going to do this and I'm going to go through with it, even though this is hard and scary, this is the right thing. And I think we really have to make sure that we trust parents instincts, and we trust parents opinions, and that we really, again, empower them to know that they're such an important part of this process.

Maureen [00:24:14] I have a couple of questions for you, Dr. Abbie. One of them that you just made me think of now, how young is too young for an assessment? Because it's interesting I was just talking with parents the other day when we're making some calls and one of the parents said, well, my doctor said that my child is too young at three for an assessment. How young as two young?

Dr. Abbie [00:24:37] A very good question, Maureen, you know, and again, not one word it's necessarily black and white. I think, I think diagnosing really young kids with ASD takes a certain level of sensitivity and understanding of a parent's perspective. But I don't really ever think too young is is a thing. So we're diagnosing kids now, you know, at one and a half. And as part of the research study that we're doing where we're looking at younger siblings, baby siblings who have an older sibling with a diagnosis, we're following development over time. And, you know, I don't think I would ever diagnose the child, let's say, under 12 months, or I never have, I should never say never. You know, around 15 months we may start seeing some of the more concerning behaviors and there are children who were diagnosed around then. Certainly from 18 months and up I don't think there is, there is a too young and I think, you know, if somebody be it a professional, a daycare worker or a speech language pathologist or even more so a parent is saying something is not quite right. My answer to any parents who asked me that, be it friends and family, be it people who come to me professionally, is it's better to follow that instinct and to go through with receiving some kind of evaluation, and if it's too early to make a diagnosis, because some children will prevent more clear signs earlier on and some it will take a little bit of time till they're developing maybe closer to two, two and a half, three, and then, you know, some kids as they even continue to get older. You know, there's always the idea of ongoing monitoring and looking out for certain behaviors and development. But I really, I don't think there is a too young. I think, if especially, if the concerns are being driven by a parent, I would say, why not take a look at what those concerns are and if they're coming forward from a professional and a child let's say is three, or two, or two and a half, you know, I wouldn't... I wouldn't delay. You know, it's really my approach to assessments and to life, really, that sitting around and waiting can be actually more anxiety provoking than getting answers. So even though it's really hard to make a brave choice to go forward and to participate in an assessment, I think it's better to have the knowledge and to know than to wonder or to look back and say, what could I have done differently? So if concerns are identified early, I say go through with the assessments and trust yourself and the professional that you see that you guys will come together to make a good choice of what makes sense for your child be it a young diagnosis or be it monitoring until they get a little bit older.

Dr. Heidi [00:27:28] We specifically wanted to talk to you because we've heard great things about your work with families in particular. And you were talking a bit about feedbacks, and it sounds like you are very attuned to families in that moment and the, all the mix of emotions that might be happening, and one of the things that we've heard that you talk about is in the feedback piece of things is that nothing about your child actually changes with a diagnosis. What do you mean by that?

Dr. Abbie [00:27:59] Well, I think thank you for your kind words first of all, I also think that...it is actually something I often say to families, so you've received correct information. I, you know I really think that part of what I want the families to know is that getting a diagnosis doesn't change who your child is. The purpose of getting a diagnosis is to help guide treatment and services and support that families can access and that children can access in order to enhance development, boost developmental trajectories and help families as well just to recieve education and funding that can be beneficial. You know, the child who comes into the assessment with all of the strengths and some of the challenges that they bring is the same child who leaves the assessment. And I think that a diagnosis helps to explain an to perhaps almost categorize what the challenges are that the child and who they are and the affection and the silliness and the positivity that children can bring to families doesn't change. And I really want families to know that we're seeing that, we're seeing the good, we know that it's there, we hear that it's there, and all that good is still there. And so your child is still your child, and now, hopefully over time, that diagnosis will help to sort of lay out a path going forward or be like a key that opens up doors, to access more services.

Shawn [00:29:29] Back to Adrienne. We're wondering if you could tell us a bit more about your daughter when she was first diagnosed and maybe some challenges, strengths and how things have changed over time.

Adrienne [00:29:40] Goodness. So when she was first diagnosed, she was talking, you could say. She was she was verbalizing words, but she wasn't using them meaningfully. And so that, I mean that in itself was confusing, when we first went down this journey of what's going on, because when, you know, people would say, well, she's talking, but it didn't mean a whole lot. So it's, I mean, initially there was a lot of we, she had a lot of difficulty communicating and we had a lot of difficulty understanding, and so there was a lot of what I now know to have been anxiety on her part and frustration on her part that looked a lot like a garden variety tantrum. So that was.. that.. that was most difficult, I think, before the diagnosis, because I just assumed that she was either behaving badly or I was doing a crappy job parenting. After the diagnosis, it was a bit easier to put into context, her... you know, the speed at which she would melt down. But then with that came the appreciation that this is gonna take a while. This isn't just going to go away. She's really dysregulated, she's really upset, she's really outside of herself right now, and so it's likely going to take a lot of work on our part to help her regulate. So there was...that was exhausting, for a long time. And we spent a lot of time co regulating with her and literally kind of bouncing her and and whispering to her and, you know, reassuring her that it was going to be OK and that, you know, we were with her and, so that took a lot of mental energy and physical energy, and a lot of detective work when we were, when she was little, because when she would melt down, you'd have that instinctive like what happened, if it wasn't clear, and in hindsight, now I can see some things that were subtle and I didn't understand back then, and that were so frustrating because I couldn't figure out why it was she was having a tantrum at this moment. There were instances now I can look back and realize that, you know, walking into rooms with with a multitude of unfamiliar people was really difficult for her. And she would literally drop to the ground, throw her head against the floor and start screaming. And I remember, I mean, this happened specifically at a Thanksgiving dinner. And I was so excited to see everybody, and I walked in to see family, and I was like (screams), and  I'm sure my voice didn't help. But she just got so upset, and she had probably her worst self injurious episode that evening. And it was...it was heartbreaking and so perplexing to try to figure out what the heck had caused this. So just to say that there was a lot of this unknown initially, but as we started to understand patterns and see patterns, then things got much more easy...it got easier to manage because we started decoding her clues and then I could learn to predict what would be difficult and not difficult. So, you know, we learned very early on that balloons scare the heck out of her. So even walking into a room with a balloon would cause her to freak out, to literally start to cry before she could even have the words to say, like, I hate balloons. So we learned that we, you know, didn't do birthday parties with balloons or we go to, you know, a birthday party home, but just not go into the room with a balloon. So as we started to understand her better, then it felt like we could manage situations better and she would react less because she was being put in situations that would cause her a lot of anxiety,a lot less. So it's to the point now where we as a family are much better able to kind of predict what's going to work for her and not. And now she can tell us what's going to work and what's not. She just had a birthday and my...someone suggested that they bring balloons for the birthday, and so I said to Amira's sister, do you think we should have balloons? And she burst out laughing like, no, of course we should not have balloons. But you know what, maybe we should ask Amira. Like I mean, she...she can tolerate being in a room with a balloon now, so I said I said, would you like balloons for your birthday? And she thought about it and you could see the wheels spinning in her head and..and I said, maybe not the ones that are on the string that kind of move around and go everywhere, what about the ones that are on a stick that we can put in a vase or something? And she went, yeah, yeah, yeah, the ones on a stick, I like the ones that stick. And so today, like, there are balloons at our house and, you know, five years ago that would have caused her, like, immense stress. So it's just been a a journey of understanding what works for her, what doesn't work for her and what we can do to support her.

Maureen [00:34:56] Dr. Abbie., I want to ask one question here. There are people who may not feel as confident about the physician that they come in to see that they don't know. What advice would you have for that person where they can have a sense of ownership about this process?

Dr. Abbie [00:35:12] I think for a parent coming into this process, I think it start from the very beginning. If there is a way that the parents, when they hear from their doctor, we are going to send you to Holland Bloorview, I would encourage parents to feel empowered and to advocate for themselves and their child and say, why? Why am I being referred? What is this assessment? What is Holland Bloorview? Why am I going there? I think that would be honestly, if I could say to families just to get that peice, because when families come to me and don't know why they're there it's difficult because rather than have those...that time to think about, okay, I'm going for this assessment and this is why; it's basically thrown on them in the context of the assessment process, which I feel badly about, because I think if families can come in more prepared, it would be helpful for them in preparing their thoughts, preparing their questions and just emotionally preparing them for the experience. So I say that if that is a potential to have that advocacy start from the very beginning, from the referral source take that. If a family has that and they're thinking about, you know, what can I do while I'm waiting, I think, making some detailed observations about your child's development. You know, parents don't have to, and I don't want parents to sit and be writing everything down because I think that gives...produces increased stress rather than reduces it. But to really be watching a child's behavior. You know, what is it that they do well? What is it that seems concerning? What is it that I want to know? Why is this happening? So for parents to start making some of those observations and just just watching. Another piece that I find helpful, and different clinicians use this differently, but again, especially with the really little ones who maybe aren't in school yet, where we can't gather information from teachers or from other people that know the child well, I think I, I would say to parents, bring in a couple videos like star them on your phone and bring them in and show me, like what are some of the good behaviors? And some families bring some of those and some families don't. And some families will bring me you know, this is what it looks like when they play that they're cousins. This is what happens when I tried to disrupt the line of toys that they've made in the living room. This is what it looks like when he's in the bath tub and having so much fun. So, again, just to get to know what the child looks like outside of the assessment little box that we put them in for the purposes of our observations, it's really helpful to have those real world thoughts and observations prepared. You know, it's always tricky with the Internet because I think if somebody says your child may have ASD, then I think parents can start Googling a million different things, some of which can be very scary, and many of which are extremely overwhelming. So I say if a parent does know why they've been referred, reaching out to credible sources in order to look at, you know, what are the early signs of ASD, I'm going to start making my observations based on these checklists that come from a reputable Web site or a reputable, reputable source. And finally, I think for most of the young ones referred I think a referral for speech and language therapy is a strong recommendation that we always have and a service that, like ours, has a waiting list. So for families to make sure that they're on the waiting list for the publicly funded speech and language services, I think is a really important step as well.

Dr. Heidi [00:38:46] Dr. Abbie, how do you know what parents really hear when you're telling them that their child has ASD?

Dr. Abbie [00:38:53] There is actually few things about my job that I wish I knew more than the answer to that question. So often, I you know, I want to turn around to parents at the end of my hour to two hour discussion with them and say, so how was that for you? You know, what could I do differently? What could I do better? Like, please give me feedback, because I just want to, I just want to make this the best experience for the parents, despite the fact that it's such a difficult experience. Now, obviously, I don't ask those questions because it's not the time or the place, and I think as Adrienne was talking about, I mean, there's so many different emotions that come at different stages of the...of understanding the diagnosis and thinking about what goes forward. But, you know, I've really reflected myself on how is the best way to communicate the diagnosis to the parent. At what point in my feedback should I tell the parents that I believe that it's ASD? And I've gone through a lot of reflection on my own, thinking about when do I think the parents are best able to attend to that information and what are they attending to afterwards? One of the things I think that I work hard to do in the feedback is constantly pause and check in with families and see if they are with me. I think there's that constant, you know, leaving space for questions. If parents want to ask something I invite it at any point during the feedback, at which point I will either address it immediately or write it down so that they are sure that I'm going to come back to it later. So I think the best way that you can make sure that they're hearing you and following along with you is just constantly checking in with them to see where they're at and what they're thinking. I also am aware that if I'm talking for a really prolonged period of time, that they're not retaining everything that I'm saying. And I'll actually say that in a very straightforward way to parents. You know, I'll say I know that this is a lot of information. I know you're not going to leave remembering all of it, and please don't put that expectation on yourself that you will. Here's my number, here's my email. You will get a copy of a report. Please continue to be in touch. And I think it's really important as a professional to realize that there's just too much happening for everything to be taken in at once. And I think that that's OK, and that families should know that that's OK and that they can always come back to you in order to help to clarify and to understand things better. I think the other thing to do in order to help prepare families for receiving the diagnosis is that from the very time that I start the assessment, I feel like I'm helping to prepare them for what may come up later on in the feedback. So, as you know, there are families who come in who are very aware of why they've been referred and why they're there. And then there are families who come in who really are very unsure about why their doctor sent them to this clinic at Holland Bloorview and what we're all about. So I see it as my job from the beginning to be very straightforward with parents and to be very upfront with parents and say, this is why you've been referred, are you aware of that? Do you understand what that means? Then going through the question about ASD, what is ASD, and giving a brief description of that, and then going as I go through the developmental history and as I go through my observation, really giving parents feedback and details on what I'm seeing or not seeing and why something is a strength or why something is concerning and what it means throughout, and weeding that thoughout the diagnostic process, so that when you get to the feedback and you do have to share that there's a diagnosis, it's not something that's coming totally out of the blue at that point. It's a conclusion that I've been leading them to from the time that an assessment started so that they are prepared and see this as a collaborative process, not just me delivering information that doesn't have a basis to it. So I think part of the whole process is really setting them up from the beginning and helping parents to see from the beginning what I'm going to be doing, being very transparent, sharing my observations and helping to process that along the way, so that when I get to the diagnosis, it's not something completely new or foreign to them.

Dr. Heidi [00:43:26] I want to I want to go back to something you said Dr. Abbie. You'd mentioned, like, you know, that that pausing and taking time to make sure, like, are your parents with you? Right. And one of the things that I found personally when I'm doing feedbacks too is also to be aware that I'm with them like the reverse of that. Like one of the big learning experiences, I think, for me has been feeling like it all has to come out in a feedback session, if that makes sense, where am I giving time and space, and I'm thinking that there's going to be this reaction and I'm like, OK, so this person is is feeling some loss, is upset, there's tears and stuff like that. And then there are lots of situations when then that parent, almost like a light switch goes off and they kind of like close up shop with their feelings. And then they're like, so what do we do? Right. And I think that's when I then have to like take their cue and then they're kind of leading the train because that's not maybe the moment that they want to have those feelings and maybe I'm not the person that they want to have those feelings with.

Dr. Abbie [00:44:36] Absolutely. And I think a lot of trainees, what I've noticed is they're expecting that big reaction and they're waiting for it, and I think we have to remember our role in that situation. You know, our role is not emotion... the person who's there to provide ongoing emotional or therapeutic support. Our goal is to look at this query of ASD and to give the families what they're showing us that they need in that moment.

Dr. Heidi [00:45:02] Yeah. I want to go back for the last question to you, Adrienne. At this point, how would you describe Amira age nine?

Adrienne [00:45:12] Oh, goodness. It's now I can speak about her with such joy and excitement. And she is...she's very funny. She's very intuitive. She's really sensitive, and she's very capable. And we didn't always appreciate that. And now that some of the difficulties associated with ASD have calmed and some have resolved, we're able to see her abilities, her talents, her strengths, and we're able to see how much joy she has outside of when things are difficult and stressful. So, I mean, she still has a lot of anxiety. Absolutely. But we can start to see kind of the full breadth of her abilities, strengths and quirks and really neat things now that she's a bit older. So at this point, I like I wake up in the morning and I'm excited to interact with her and to joke around with her. And if I'm really honest, that wasn't always true. And I remember I can feel in my body what it used to feel like to go from a state of blissful sleep to waking up to her crying or moaning and how that felt in regards to like the stress that was coming from my belly up into my throat. And I just remember thinking for that split second before that stress hit, like, oh, everything's fine. And then for that reality to hit, when I heard her struggling, it just...it...it was...it was a really overwhelming feeling, and it made kind of greeting the day and greeting her really difficult. But at this point, we...she's able to manage so much better and I am able to manage so much better that despite the fact that I know that there will be stresses and there probably isn't one day without tears, we have tears, I get excited about what I know is going to go well and what I am going to learn about her, because we're starting to peel away the layers and understand parts of her that are just so cool and fun that we haven't had access to before.

Dr. Heidi [00:47:31] Yeah, I've been really lucky to have actually worked with Amira too, in the last few months as well. And so all of those things that you mentioned, like the sense of humor, like the just like thoughtful insight, she's really like a great observer and contemplater and stuff like that as well. And, you know, in the description that you've you've given us about earlier time periods, it's like I don't I don't even recognize that girl with the girl that I was meeting with, like in the last couple of months. So it's really interesting how that's changed over time.

Adrienne [00:48:05] Yeah, she's had an amazing trajectory. There were no firework moments. It all happened very slowly and steadily and there were definitely regressions. But it has, it has gone in a really amazing direction because she struggles less, but I think also because we accept her more, and we look for the things that are going well and we celebrate the things that are going well. And we don't get so bound up with the things that are difficult for her because we just know that's that's how her brain is wired, and these are the things that she, you know, she's going to need to work with. And we don't get so upset about and focused on those particular things. And we spend more time celebrating and looking for the things that make her excited and, and, and happy about her own life.

Dr. Heidi [00:49:02] Yeah, I think if I could sum her up in two words, if I had to do it, nobody's forcing me but I will, I would I would say cool and creative. Actually, when when I was working with her, she was actually talking about her interest. She's got a lot of interests. And one of those interests is listening to podcasts.

Adrienne [00:49:24] Yes. She loves listening to podcasts.

Dr. Heidi [00:49:29] She does, yeah. And I was surprised, like the variety and stuff like that. And actually talking with her and listening to her interest and her enthusiasm and how much she was soaking up from those podcasts actually planted the seed for this podcast series. So it's actually, we're here because of Amira.

Adrienne [00:49:48] Oh, thank you. Oh, my gosh. That'll mean so much to her. She yeah, she does love podcasts and and she gets out of them so much more than I ever imagined she would. So if, you know, if other parents and other people can get even a fraction of what you know, I know she gets from soaking that in, then that'll be really exciting and a testament to her. So thank you.

Dr. Heidi [00:50:12] Yeah. So we could probably talk about these topics for hours. I'm sure certain things that have come up that will lead to more conversation in later episodes. We so appreciate having both Dr. Solish, Dr. Abbie, and Adrienne sharing their perspectives on what can be happening when a child is diagnosed with ASD.

Dr. Heidi [00:50:34] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to emails at ASDEngage@hollandbloorview.ca.

Episode 4: Social communication – More than just words

Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.

Maureen [00:00:24] I'm Maureen Mosleh Psychometrist.

Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.

Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.

Shawn [00:01:01] Welcome to Episode four of ASD Engage. Today, we'll be discussing communication and specifically talking about some of the challenges parents experience with their child's ability to interact with others. Maureen and Heidi will be talking with Ian Roth, a speech language pathologist, and Dr. Jessica Brian, a psychologist and clinician investigator. In addition to working independently in their respective fields, Ian and Jess also collaborate in numerous research projects as they relate to communication in young children with ASD. Here's what they had to say.

Maureen [00:01:37] So where is she going to start with you, Dr. Brian, could you tell us a bit about what you do at Holland Bloorview?

Dr. Jess [00:01:44] Well, I'm a psychologist, as you said, and I sort of wear two different hats here. So I have a clinical side to my work and I have a research site to my work. Most of my clinical work involves diagnosis, often with young children with autism, but all the way up into teenagers as well. And my research really focuses on very early identification of babies and toddlers who might be at risk for developing concerns, who may end up with the diagnosis of autism, as well as intervention to support those kids as they're learning.

Maureen [00:02:18] OK. All right. Now, you've been in the world of ASD for quite some time now. So tell us how you got into this.

Dr. Jess [00:02:27] I have been in this field for quite some time. Thank you for noticing. Honestly, I, when I was a teenager, I had a family friend who had an older sister who had a young child. And the child was sort of around two and was starting to. It was starting to become apparent that he had communication delays and language delays. And that woman actually hired me on as sort of a nanny for this little guy. My first job was to talk to him all the time. And we sort of developed a really strong bond and I really enjoyed interacting with him. And so I spent several summers living with the family when he was quite young. And he did end up receiving a diagnosis of ASD and sort of that, I was sort of intrigued from the beginning and that really solidified for me the interest in autism.

Maureen [00:03:21] And you just keep going since then.

Dr Jess [00:03:22] I have just kept going since then.

Maureen [00:03:24] There's no stopping you now?

Dr. Jess [00:03:25] No. Y.

Maureen [00:03:28] You mentioned that you're involved in research, Dr. Brian, Jess, and our second guest actually collaborates with you often in some of the research that you do so, Ian, I wonder if you could tell us about your role at Holland Bloorview and the work that you also do within the community.

Ian [00:03:44] Sure. So currently at Holland Bloorview I'm working with Jess.  So Jess has co designed the Social ABC's program, and so I'm working in a research project to look at how well parents are able to learn the Social ABC's program, which is a parent mediated intervention for young kids with autism spectrum disorder or with social communication challenges. So I'm working as a parent coach, helping the parents to learn the strategies and coaching them to use those strategies with their kids.

Maureen [00:04:16] Okay. All right. And we've also heard that you do quite a bit of work within the community. Can you tell us a little bit about that, what that looks like?

Ian [00:04:23] Sure. So I've been working also with a lot of families over the years who have kids who have autism spectrum disorder. I've done a lot of parent training up until now, working as an instructor for the head-in center, teaching The More Than Words program. I also am working with the neonatal follow up population and helping parents whose kids are developing differently in terms of their social communication skills to learn some of the strategies that might help them to improve their social communication development.

Maureen [00:04:58] Okay, terrific. And so some of our listeners might not actually know what a speech language pathologist does. So maybe you can help us better understand that

Ian [00:05:07] Sure. The title is a bit long. So we're working with all aspects of communication. So a speech language pathologist is somebody who assesses and treats anybody with a communication disorder. So that could be somebody who is developing their communication skills differently, as in autism spectrum disorder. It could be somebody who has acquired some difficulties with communication, say, after a head injury or a brain tumor or something like that. We work with children. We work with adults. And the whole idea of speech and language being different is very important, right. So speech has to do with the production of speech and how somebody sounds when they're speaking. Language has to do with the words that are used and how they're used, how well they represent what they're trying to say. And then, of course, your social communication and social communication has to do with a child's interest in or a person's interest in communicating and how much they see those opportunities around them to communicate.

Maureen [00:06:12] Okay. Right. So I kind of want to talk a little bit about the speech language component that you were just talking of. A lot of children come to our setting with delays in their language. And we know that children's language can develop so fast within the first three years that we often see. So what are some key milestones that happen in that time that parents might be wanting to look out for?

Ian [00:06:40] So one of the first ones is just attention to a person, right. So in the first few months of life, we expect babies to start to notice their parents and recognize their parents in a different way. So parents, especially mothers who are often holding their babies, will start to notice that as they speak, their child starts to look up at them. We want to see that babies are starting to notice their parents and to react to them in a unique way, in a way that they wouldn't necessarily react to another person's voice. So that's a really, really early milestone. We want to hear a lot of babbling early on so that babies are starting to make different sounds and and parents are starting to recognize that there are different sounds and they sometimes have different meanings, even different cries, in fact. And then as as words start to emerge, we hope that words are going to emerge somewhere around the first birthday. And we expect that, you know, after the first word is heard, that we're going to hear other words coming soon thereafter. In terms of getting words into longer utterances, we usually expect kids to be able to put two words together once they have learned to say about 50 to 100 words.

Maureen [00:07:57] Alright. Excellent. So when there are delays in language, what might some of the causes be?

Ian [00:08:08] That's a really good question. I mean, there are so many different possibilities to why language might be delayed, right. So if all other aspects of communication are developing as expected, but language is delayed then we want to look at how well are they understanding what other people are saying? How well are they hearing what other people are saying? So is there any difficulty with their hearing ability, in which case they're not understanding, in which case they're not being able to to use words in the same way. Some kids understand very well, but their expression develops a little a little bit later. One of the things that really does help kids to to communicate better is identifying those opportunities around them to communicate, the same way that anybody who's learning a new skill, whether it's learning to play a musical instrument or something else, you get better at it the more you practice. And so for for young kids, we want them practicing communication right from day one, even if that doesn't include words, even if that doesn't include gestures, we want to see that they are engaging in interactions with people where they're paying attention to people, where they're they're responding to people and even getting into a bit of a back and forth, right. So over time, we want to to see that that practice is continuing and that practice is leading to more communication, more frequent communication, but also more sophisticated communication.

Maureen [00:09:35] So it's quite complex. And it also includes you having to take into consideration the environment as well. It's really quite important. OK.

Ian [00:09:44] Absolutely.

Maureen [00:09:45] A lot of people saying that communication's just related to speaking, but you kind of touched on a few other things. What else is involved in communication? What are you thinking about when we say communication?

Ian [00:09:58] I'm thinking about people mostly, right. Communication only happens between people. So a child who is practicing their words by themselves that's great, they're working on their speech. But that speech is not enough to qualify as communication. It's only communication when there is a message being sent from one person to another. So that said, communication happens without words a lot of the time, too. So kids might be looking in a certain way or gesturing in a certain way or moving someone else's body in a certain way, there's lots of ways that young children especially are going to communicate even before they they use speech or even after they've used speech, but sometimes without speech, right. So communication is is absolutely it's sending a message that somebody else understands to that person.

Maureen [00:10:49] With or without language?

Ian [00:10:51] With or without speech. Yeah.

Heidi [00:10:53] So that kind of segways nicely into moving back to Dr. Jess then. We've been dealing with thinking about speech, language and communication. And one of our earlier episodes, Dr. Sharon Smile described that social communication is one key part related to an ASD diagnosis. So then is all communication social?

Dr. Jess [00:11:19] That's a really good question. I mean, I think I would argue that all communication is social. I'm looking at Ian to see if he agrees. And I think part of the reason that we sometimes make that distinction and talk specifically about social communication is to really highlight what some of the concerns might be in a child who goes on to receive an autism diagnosis. And so as Ian mentioned before, when we think about communication, we do think about two people sharing messages back and forth. When we use the term social communication, we really want to highlight that the function or the purpose of that communication is for social sort of has a social piece to it. So you may think about some forms of communication one could argue, although they they involve people so they're social, they may have sort of a more functional outcome, meaning like I'm asking someone to do something for me or telling someone to do something for me. Whereas when we think about social communication and why we use that term is we really want to highlight that purpose of communication that has a social basis to it. So kind of wanting to connect with people, finding ways to interact in a sort of, in a way that builds relationships more than sort of just having needs met.

Dr. Heidi [00:12:47] Hmm, interesting. So what would be some examples of communication that doesn't seem to have a purpose then?

Dr. Jess [00:12:56] So, again, you know, I think we, I would love to hear Ian's take on this too, but I think when we when we think about sort of communication challenges, let's say, in kids who have specific challenges in those areas, we may see kids who have words and have developed speech and may be using those words correctly, their pronunciation may be great, they may, in fact, be quite sophisticated in terms of the words they use. They may be appropriate to the context, so a child may be very good at naming objects, labeling certain types of dinosaur, let's say, for example. But if that child isn't using those words to build a relationship with someone else, that's where we might say that, you know, they're developing their language fairly well, but they're having difficulties in that domain of kind of connecting socially with their communication through their communication.

Dr. Heidi [00:13:58] So then when you are doing an ASD assessment with a child, what are some of the specific things that you might be looking for that are either present or absent in that social communication?

Dr. Jess [00:14:09] So, you know. One of the things to really consider is, is that sort of distinction between words and other forms of communication. So if you really think about words, what we're looking for are children who use words in a way that is sort of directed to another person. So that may look like they're either looking at the person that they're sending, talking to, sending the message to, or at least they're orienting their body in the direction of that other person. And so, you know, same with other forms of communication. So if an individual is gesturing or pointing, you want those those gestures to be directed to somebody else. So it's sort of like really thinking about what the purpose was for the child in doing that thing. Was it to deliver a message to somebody else or was it just sort of practicing on their own? And some of that practice, as as Ian mentioned, some of that practice on your own is really important. And certainly early in development, we hear lots of, you know, kids, little babies in their crib who babble and they're practicing with their sounds. And that's wonderful. But really, what we're looking for in the case of sort of concerns around social communication disorders or autism specifically would be kind of that disconnect between maybe an ability to have some words, but not to really direct them to somebody else.

Dr. Heidi [00:15:34] And so I mean we described social communication as one aspect of ASD, how might social communication tie into other behaviors that we might see in ASD?

Dr. Jess [00:15:46] I think probably one of the the main links might be between that sort of difficulty communicating and then having some sort of disruptive behavior or behavior that's considered to be disruptive. I think it's very important to really understand if a child engages in behavior like, let's say, throwing a toy or hitting somebody, what is the purpose for that child of using that behavior? And sometimes it may be that they don't have another way to get their needs met or to communicate what's going on. And then also, you know, just that frustration of not being able to communicate may lead to sort of some behavior that we would describe as disruptive behavior. So we do see this kind of behavior in autism, and in many cases it can reduce as children get better ways to communicate and find ways to sort of have their needs met in more prosocial, let's say, in more prosocial ways.

Dr. Heidi [00:16:46] Yeah, I guess maybe for both you, Dr. Jess and for Ian, we were talking to a family earlier on in the week who was talking about their child's language delays and initially, like this child went on to get diagnosed with ASD, but initially they were feeling like, you know, their son's language was amazing at home, he was communicating, he was interacting, and then it was only when he went to a different setting, a daycare or school, that his language seemed to fall apart. And all he did was repeat, I think, cement truck. They were talking about cement trucks, cement truck, and they'd never seen this before. And so I wonder also about that idea of like adaptability in language, is that something also that you're paying attention to or something that we should be noticing in young children too?

Dr. Jess [00:17:37] Maybe I'll start and then I'd love to hear Ian's take, too. But I think one of the things that we see a lot in all kids, and it may be pronounced in kids with ASD, is some sort of variation between the skills that you can exhibit in one context or one setting versus others. And we do know that when children feel more anxious or more uncomfortable, skills can seem to sort of decrease right. So it's not as if that child is losing those skills, but as we, many of us who experience anxiety in some context may experience, you sort of can sometimes struggle to find the right words or a sort of whatever you're really great at you may not be as comfortable or as proficient in all different contexts, right. So I think for a lot of the kids that we work with, the different environments can really create different levels of stress versus comfort, and then when kids are more comfortable, they're just much more likely to exhibit the skills that they have, and I think particularly for kids who are struggling or maybe sort of in the early stages of learning, that those skills are a little bit more variable or even more vulnerable to kind of the differences in the context or even sometimes mood, time of day, as well as sort of who's in the environment can make a big difference.

Dr. Heidi [00:19:03] Yeah, that's interesting. Yeah, because I think sometimes parents kind of feel like I feel a little crazy because I can't like I see this at home, but then other people are seeing something different. Do you find that as well too Ian?

Ian [00:19:16] Yeah, absolutely. And I think when we see kids who are developing their social communication skills in a typical fashion, the language that they're developing at that time is extremely generative, right. They learn the word for truck and they learn the word for big. And they start sometimes say big truck and sometimes they say big dog, and sometimes they say big tree, and they start to move words that they've learned around. At home, you know, you're going to see that as completely typical. And for a child who's social communication difficulties, social connection development is happening in a less typical way, sometimes what we see is that they're not generating language in that same way where they're manipulating words and moving them around, but rather they learn whole phrases at a time and or whole words that go along with what they see at home, and it's very comfortable, it's very repetitive, but it fits, right. And it doesn't seem that different until they're taken out of that really familiar environment and put in a different one, and they don't have those pat phrases or those whole chunks of language to use in that new environment. And they look much less proficient, even though at home it seems like everything kind of fit.

Dr. Heidi [00:20:31] Interesting. Yeah. So, Ian, you had mentioned, you kind of touched on it earlier, thinking about key milestones and paying attention to other people, and Dr. Jess like when we are doing ASD assessments, oftentimes the idea of joint attention comes up specifically, and that's a really crucial building block for social communication. But parents might not really know what that is. So can you explain what joint attention is?

Dr. Jess [00:20:58] So there are a couple of different pieces to join the attention, and one, we've talked a little bit here about attention and sort of paying attention to people is a big part of joint attention. And really, when we talk about joint attention broadly, we're talking about sharing your attention about something with somebody else. So we, you know, we can think about how a child pays attention to things in the world. So do they notice, for example, when a dog walks by or an airplane flies overhead, and that would just be sort of basic attention, so do they follow and notice things in the world? It becomes joint attention when they're sort of that, again back to the social motivation, when there's that motivation to pull somebody else in to experience that with you. And, you know, there are sort of some very specific things we may look for. But one of the sort of the most common example of that in toddler development really would be noticing, you know, you're maybe at the park with your toddler, they notice a dog walk by, they might reach out their hand and point or they might say doggy, or they might say, woof woof. And ultimately then they would typically turn back to you as their parent, as if to say, do you see this cool thing that I see? So it's really that kind of that social connectedness that many, many toddlers really seem to crave so, so easily and so early in development, that we talk about when we talk about joint attention. So bringing in someone's attention to see the thing that you're seeing and enjoying together.

Dr. Heidi [00:22:38] Yeah, yeah. In our last interview, we spoke to a parent who described her daughter as very independent when she was younger. And that was kind of the label she kind of put on her before the diagnostic process where her daughter was diagnosed with ASD. And before she was diagnosed, she noticed that when her daughter started to walk, she tried to look into her eyes to connect and share that excitement of the moment that her daughter was just starting to walk. And her daughter didn't reciprocate. And that really stood out to mom as like, OK, we're not sharing this experience together. And it brings up the idea of reciprocity, something being reciprocal, right. And how would you talk about reciprocity with parents?

Dr. Jess [00:23:32] First of all, I love that example. I think it's such a powerful example. And we hear that kind of observation sometimes from parents, even sometimes it can be a couple of years later, right. And thinking back, there was that moment where I would have expected my child to connect with me about this thing, whatever it was, we're having a giggle game, we were playing peekaboo, walking, you know, whatever the example is. And sometimes in hindsight, parents do reflect back that that connectedness seemed to be different for a child who goes on to have autism. Sometimes parents don't notice it at first, particularly if they haven't had other children. So kind of knowing how much a child should (I put quotes around that) should look at you when they're sharing excitement,  I mean there's so much variability across children to begin with that there are no sort of there are no rules about when these things come into play in a very sort of concrete way. But oftentimes we'll hear it from a parent who may be interacting with a second born child or a later born child who's now eight or nine or 10 months old and doing some of these things that seem almost so natural for them. And in hindsight, those parents say to us, in hindsight, I realize that this little one who, you know, my older child who has autism really wasn't doing those things in quite the same way as his or her younger sibling is. But I think that that sort of that reciprocity is really around kind of, again, socially connecting with somebody else and kind of wanting to pull someone into your world. So we talked a little bit about joint attention, which is sort of pulling someone to share something with you that's maybe off in the distance. But there's also that shared those shared experiences, so again, I think that example that the mom gave about sort of feeling like her toddler should have or might have wanted to share that experience with her and noticing that it wasn't there is such a really salient example of what we hear from families about just feeling like some some connectedness wasn't quite what a parent would have expected. Often it's very subtle like this, right. So I think that the other piece to really keep in mind is that lots of parents don't experience that because it's so subtle. Raising a child is exhausting and stressful, and takes, you know, so many resources out of all family members that sometimes these subtle things are really easy to miss, and families, it's hard for a family sometimes to look back and almost, you know, we hear from families who say, I wish I had noticed this earlier. And often it's it's impossible to have noticed it earlier, right. So these are things that can be very subtle, and families are juggling so many things that they shouldn't they shouldn't feel like they needed to have caught that earlier. But that's part of what some of our research is trying to identify is are there some really sort of key developmental things that go differently in kids who end up with autism? That we can, you know, help future families down the line to be watching out for those things. And the main goal of watching out for those things is to start finding ways to enhance a child's development as soon as possible. So we know that the sooner that we can help families to support and sort of foster their child's development, we do think that we sort of have, we have a better opportunity to make, to help that child make gains if they start sooner, but we also know that supporting kid's development across their lifespan is really important, so, you know, we put a lot of stock into early identification and early intervention and early supports, but those supports can be valuable at any time.

Dr. Heidi [00:27:50] And it's interesting. So the example of the parent that I described right, taking first steps is around like first you know birthday and stuff like that, and then Ian you were mentioning, like being having that attention so that reciprocity, how early are those signs of reciprocity showing up?

Dr. Jess [00:28:10] I mean, one of the examples that Ian gave early on about sort of language development was about babbling. And we do, we, you know, again, these are subtle things and we don't expect parents to necessarily notice them, but we do find that quite early on as soon as kids start babbling, babies start babbling,  they do usually develop what we call reciprocal babbling. So kind of babbling in order to pull someone else in socially. So, yes, they're practicing their sounds and they're doing all sorts of play with sounds that and some of it is self directed, and it's just kind of learning and mastery for its own benefit, which is wonderful and really important, but a lot of that very, very early babbling, so as soon as we start to hear those kind of sounds that children are making on purpose intentionally, around that same age they usually are starting to want to either see a smile from a parent when they make that sound, or if the parent makes a sound back they'll take another turn, and that very early turn taking does seem to sort of in typical development, seems to come into play before the first year and before those first words come, you know, in the kind of seven or eight month range. And again, there's so much variability and there's so many reasons that children may not hit those milestones when we expect them to. But usually when kids start to play with sounds, they start to use them socially around the same time.

Ian [00:29:42] And even just that idea of looking to the parent to, you know, as Jess' example so, you know, the child is looking at the parent for kind of a smile or a reaction or something like that, it speaks to how the child views the other person, the parent or other family member. So what is that person to me? And when we see social communication at different stages of development, often in a very, very early form of social communication, it's just to smile and gaze. But when kids are developing differently or developing their social communication skills differently, sometimes they see the parent as just somebody who can get me the stuff that I can't get myself. And the role of that other person is defined much more narrowly for a child with social communication difficulties. And so that reciprocity is much harder to achieve because the child may not view the parent as somebody who's got the ability to enhance other situations, they are the stuff getter and that becomes how they define that person. And for a parent, that's really difficult to take, right. That here we are, we're supposed to be smiling at each other and bonding, and, you know, enjoying this moment together this really important milestone, and the child hasn't developed the ability to appreciate that with another person.

Dr. Heidi [00:31:05] Right. That's interesting. I like that phrase the stuff getter. I'm sure a lot of parents do feel that way, regardless of their child's development. But we, I guess a couple of things, so when we were getting ready for this particular episode too, thinking about social communication and language, right, we were reflecting on something that Dr. Smile had been talking about in an earlier episode about all the checklists that you get, and a lot of the checklists around language and stuff like that, where it's just kind of like, is it present or is it not present? Is eye contact there, are words there and stuff like that, but then, Dr. Brian, you're talking about like those like subtleties, right. And sometimes the subtleties are what reveals when there might be difficulties going on.

Dr. Jess [00:31:52] Yeah. I mean, I think, you know, I think that captures it, that the subtleties and the kind of nuance differences tend to be what's more informative, often very early in development. Certainly when kids are missing big milestones, that's often a good reason to go and get further assessment or to consult with the doctor or daycare staff. And many, most parents do see those, right, those milestones are kind of in everybody's face all the time. I think, you know, the challenge with those milestones is that those concrete ones well, all of child development is kind of really variable from child to child. And we know that often it's very stressful to be a parent of a young child, particularly the first time round, and so those milestones are helpful, really helpful for kind of catching the big challenges that may need support. But sometimes they also lead to a bit of stress. So, you know, and they change over time, which I think is really hard for families, so it used to be the case that kids should be walking by 12 months, now it's a little bit stretched out to 16, 18 months. So it's important that we don't forget that there is variability over time in terms of what children are exposed to and what expectations are, and variability over children and individuals and what sort of motivates different kids. So back to that example about the little one who was sort of walking and maybe not connecting her gaze. Sometimes, you know, for kids, when they're mastering one skill, it's hard to exhibit the other skill as fluently as they might have otherwise. So, you know, I would hate for parents to sort of hear this and and notice that, oh, my child was, you know, looking at me yesterday, and then when they were on the monkey bars, they didn't look at me, and this means there's a big concern, because sometimes when you're trying a new thing, there's other things that may be more natural for you kind of go on the back burner for a little bit. So those milestones, I think the challenge with those concrete milestones is they don't really help us think about the integration of skills. And oftentimes for diagnosis of autism or ASD, what we're really looking for are the integration of these subtle, more subtle skills as being kind of coming online, and so sometimes I think about not necessarily an age at which something should happen, or an example of when something did or didn't happen, but sort of more of an overall picture of most of the time when your child makes sounds does he or she tend to look in your direction? Right. So it's not kind of a checklist of does he always look at you, or does she always look at you, or when she makes or how many sounds does she make, or how frequently, or how old was she when she made her first sound? But it's more about that overall sort of global picture of most of the time when your child is saying things do they seem to have a social purpose which which is hard to put in a textbook right. It's hard to put on a checklist. And I think that's what, those are the kinds of things we're really looking for, particularly early in development, where the science might not be as obvious.

Dr. Heidi [00:35:18] And so it's not only like hard to put in a checklist, but it's also hard to notice like if you're just seeing the kid really briefly for, like, a regular checkup to, right. Just to add a question that I have for Ian, we see a lot of parents who come in and their children have language delays and we might be querying ASD, and then we hear, oh, boys develop language later. What do you say to that or what do you say to parents?

Ian [00:35:46] Generally, that's not the case. There might be subtle differences between kids. Of course, there are subtle differences between kids. But in generality like we don't see that boys are developing skills later. The milestones are essentially the same for boys versus girls across most communication skills. So, yeah. So if a parent is concerned about something, they should have it checked out regardless of what gender the child is.

Dr. Heidi [00:36:17] I think, I feel like you've just dispelled a huge myth right there. You were mentioning before you were talking about when we're discussing reciprocity and sense of connectedness, and sometimes parents becoming the stuff getter, I guess maybe directing it first to you, Dr. Jess, when there are difficulties with that reciprocity, how can it affect the bond or sense of connectedness between a parent and their child?

Dr. Jess [00:36:46] That's such an important question. I mean, I think that if we think about so early in development, so as soon as children, if you think about, you know, Ian was using the example before of a mother nursing her baby. So if we think about sort of even the physical space between when you're nursing, between your baby's face and your face, that's kind of the exact distance at which babies can start to sort of focus at a particular point in development. So people's faces really are one of the most important early things that babies look at and see and use to make sense of the world and kind of develop those bonds. What we hear from some of the families that we work with is that similar to the mum that you're referring to is that, you know, thinking about how important it is, let's say, for parents to when they look at their child and smile, to see their child smile back at them. And again, you know, we can think about it biologically if we want or sort of in terms of sort of social development, but even biologically, new mothers are exhausted and worn out and looking at your baby increases your oxytocin in your brain, which makes you feel good, right. So from a biological point of view, when your baby smiles at you, it's probably really adaptive because you're like, wow, I love this little person. And you feel better, and it gives you the energy that you need to sort of manage the stressors of being a new parent. When you look down at your baby and they don't smile at you, again it may be so subtle and a parent may not know that my baby is at an age where they should be able to smile back at me. But that parent isn't getting that sort of positive feedback from such an early stage in development. So, you know, it's very it's almost impossible to imagine kind of what those what that sort of cyclical long term outcome of that is. But if you think about how important it is for a new parent to receive those smiles and that connectedness from their baby in order to sort of manage all the difficult things about dealing with babies, when that balance is set sort of against receiving those positive feelings, I think it just must be extremely difficult to then sort of manage with all of the stressors. And if you add to that some of the stressors that may also be associated with with having a child with ASD, so the starting to worry that maybe they're not babbling when the checklists told you they should be babbling, and you're so you're feeling distressed or stressed out about those things and you're not kind of having those positive feelings returned to you in the way that many parents get, I think it just builds so much added stress and distress for families. And, you know, the parents that we work with continue to amaze me in terms of how resilient and strong they are to keep going and keep loving, you know, we all love our babies, right, and so that's not that's not what surprises me, but sort of to not be necessarily getting that positive feedback quite so easily, and then to still just keep connected and motivated to work with whoever can help them kind of help their baby to develop those skills.

Dr. Heidi [00:40:47] I think yeah, I mean, you highlight, like, how important that is, right. And sometimes, like I mean, it sounds like it could be kind of deflating, kind of defeating for a parent when they're not having that sense of connectedness in the way that they perhaps expect right, or that they're kind of pulling for in some ways. But it's interesting because, again, back to the example of the toddler walking right, mom's description of her, she develops a narrative that still resilient. My daughter is independent right. And so then she kind of adapts to then OK, this is what I'm getting from my child and this is how we'll build the connectedness this way.

Dr. Jess [00:41:31] And I mean, I think that captures it. I think that the resilience of parents is, of all parents really, is remarkable because babies are really difficult. But, yeah, finding those kind of special things that work and that what we see a lot of is creativity in parents, too, so maybe I can't get the smile the easy way, but I can get it this way. And so many parents have developed these kind of amazing strategies for pulling in that getting that connectedness and not even realizing how hard they've been working to get it. But maybe, you know, it's this silly song and dance or this funny little noise I make or this little quirk that I do that gets my little one to smile and laugh at me, and not necessarily even knowing how easy it might be in other cases and how hard they're working in this case. But I think you're right, that resilience and that just creativity and what we see is this amazing match between parents finding the thing or the things that are sort of the magic, the magic piece that helps their child to connect with them.

Maureen [00:42:44] So I kind of want to pick up on what you were saying, because we see a lot of the parents that I've seen that have come in and who would gain the narrative that they use is that well it's just upsetting, he doesn't want me to interfere with his play, he prefers to play on his own. Like what kind of guidance can you give some of these parents when they don't know how to try and be a part of their child's world? And so they do back off and it's really quite heartbreaking to see because they want so badly to be in that world.

Dr. Jess [00:43:15] Yeah. I mean, I definitely see that. I think the first thing that I do say to parents is because sometimes the strategies that we recommend are around sort of finding ways, helping families to try new things and sort of create different ways to connect. I think that the first thing I would say to families is that if you've been in a pattern where you back off because your child gives you the message that they want you to back off. The first thing is that that you're being a responsive parent. So you're reading your child's cues and your child's cues were telling you I want to do this by myself. And so I think sometimes when we work with parents and help them find ways to get in, they wonder, oh, should I have done this more to begin with? And I think it's a really important message to remind parents that the reason maybe they've been backing off is because they were responding to the child's cues in a way that's really adaptive and lovely and sort of well-informed, right. And with kids with ASD, we need to just sort of work around that a little bit. So finding ways some of the most successful ways really are to be silly and playful, to be gentle with kind of how you get involved. We'll often sort of practice with parents little ideas about sort of a child who, let's say, loves playing independently with a set of cars or something. There might be a way that you can just roll one of the cars in a funny way and then sort of pull back again. So kind of making it really clear that you're not there to ruin the game, you're not there to sort of change the game too much, because we know that sometimes kids with ASD really like the game to be exactly the same way every time, and that's part of why it's difficult when other people try to join because other people always change the game, right, just just by virtue of being there. So we help parents sometimes think about ways to become involved in tiny, small little steps that ideally make the game more fun. Sometimes it won't feel more fun right away, sometimes the kids just need a little bit of exposure and practice like, oh, it is kind of funny when daddy does that, it is kind of funny when mommy does that, and sometimes it's just really slow and gentle, kind of taking a turn and then pulling away again so that it doesn't feel too overwhelming. But honestly, there are some activities, too, that may not be the best place to start for certain kids, right. So there may be games that are so special a certain way that I do it and that may not be the place to start in terms of trying to get involved, there may be other ways you could, you know, show new things to your child that maybe they haven't seen before that you think might be similar to the game they love, but they won't have that sort of intense kind of vested interest in having it happen the same way. So kind of redirecting and sort of trying new things, showing them this is really fun, too, and ideally showing how the involvement of another person kind of increases that fun.

Maureen [00:46:37] Yeah, yeah. And a lot of persistence.

Dr. Jess [00:46:40] Yeah. Yeah. And it's so hard when that when the persistence is met with what feels like the child giving you the message I don't want you to be part of this right like that's so hard because you're putting in a lot of energy and that's the feeling you get. That's really that is discouraging.

Maureen [00:46:59] Okay, that's great. You gave some great tips.

Dr. Heidi [00:47:02] And I mean, it sounds like that also parallels a lot of what you'd be trying to promote in speech and language interventions as well. It's interesting, I've had some parents come in for an ASD assessment and they've gone to speech and language and they feel a bit confused because they're like, oh, the speech and language pathologist was just playing with my kid. How is that helping them to learn to communicate?

Ian [00:47:27] Yeah, no, I think that that's an important bit of education that we have to do when we start to work with families to let them know that play is how we help their communication develop. Right. So if the whole idea of social communication is recognizing those opportunities to communicate or to interact, that's going to happen mostly through play for a child. A child is playing for most of the time that they're awake, right. So if we want them to enjoy other people, to see the value of interacting with other people, it's got to be largely on their terms. And so we want parents or clinicians or teachers or daycare staff or whoever is interacting with that child to do so in a way that as Jess was saying shows the child that fun gets you know, things become more fun when another person joins, somebody else has a really good idea, somebody else makes a really funny sound, somebody else is going to make something happen in a way that I have never thought of before. And that, again, is just selling the idea to the child that, oh yeah, other people are really valuable. And then they become much more sophisticated in their social communication because they see these other people as more than just the stuff getters, right. These other people are there to enhance my otherwise fun activities, they're making them even better. Or if I tend to, and a lot of kids on the spectrum are going to revert to the same activities day in, day out, because that's what started off being fun for them, and they're kind of wired to want to do things in a similar way over and over again. And over time it becomes less exciting for them, and but they do it because, again, they sort of crave that sameness, even though the excitement has kind of diminished. A parent or another person who comes into that activity and shakes things up in a way that the child hadn't thought of before, all of a sudden kind of blows the child's mind and now that child has a reason to pay more attention to that person and sees that person in, whether it's a parent or somebody else, in a way that maybe they hadn't appreciated before. And that, again, gets them thinking about interacting for different reasons, more often in different situations.

Dr. Heidi [00:49:41] So unfortunately, parents don't get like a manual on how to be like this, fun person who is more than just the stuff getter, so like, how do you help parents be that kind of fun, silly, goofy person?

Ian [00:49:56] I think it starts with what Jess was saying, right? Like to be fun, to be smiling, to persist and to really, I think it's really important to notice a) what is the child doing? What do they, what do they gravitate towards, and then to really dig deep into that why? Right. So a child who loves fire engines, why do they love fire engines? Is it because their vehicles, in which case all vehicles with wheels should be equal? Is it because they're red? Is it because they've got lights on top? Is it because they make a sound? There's so many different reasons why a child might like the thing that they like, if a parent starts to figure out why they like that thing, they can start to take that component and extrapolate it, put, you know, use it with other activities, and again, it shows the child that there are other ideas that might be just as exciting as the thing that I've been doing day in, day out, but I didn't know it existed before. And that, again, it gives the child a little bit more awareness of what else is out there and the value of another person who has these independent thoughts, who's helping me to enjoy these interactions.

Dr. Heidi [00:51:04] Yeah. And Dr. Jess, bbefore we came into record this you were talking also too just about like a parent experimenting, right, and sometimes it works out and sometimes it doesn't. Can you tell us a little bit about the Grover story?

Dr. Jess [00:51:21] So first, I'll talk about experimenting and then maybe I'll tell you about the Grover Story.

Dr. Heidi [00:51:26] Sure, fingers crossed.

Dr. Jess [00:51:28] No, I think experimenting is really important and I think, you know, what Ian was talking about in terms of helping parents really dig down and identify what features of a toy or activity a child likes are definitely the place to start. The other side of that is then also being a really good observer about the impact that you're having on your child. So that kind of hypothesis testing, let's say, so if you have a child who loves fire engines and you wonder, is it because they're read, is it cause they make noise? Is it because they're vehicles? You can sort of test those hypotheses by showing your child all those different things and see what they like. But sort of, and in a similar vein with kind of just your own playfulness. Sometimes parents will accidentally happen on something that that their child loves. And so if you're kind of really vigilant and watching your child's facial expressions or kind of their body movements, their eyes, you'll note you can notice when, you know, when something you do creates that response sort of results in that response from your child. So it may be something as silly as, you know, you may be face to face with your toddler and feeding them, and then something happens; the pudding falls off the spoon, or you sneeze, or your chair gives out, like something silly happens, and you may see that that generates a particular response, like a really happy, excited response in your child. And that's the kind of thing that you can continue to do, right. So this got really an excited, an excited response. So, so, we do, so in some of our interventions, we help families to also really try new things, experiment and also be ready for those accidental things that come up that create that sort of generate a really fun response out of the child and then sort of to to keep those going.

Maureen [00:53:29] That's so concrete to me though. I think right after you having seen that, I have visions now of going home and saying, oh, look, it is the red fire truck, but look at all these other red cars. Now, I have something that I can actually go grab them, introduce, oop nope, it's not the red, but I have some other flashing things, like, I feel like I have a strategy now. I think that that's really helpful.

Dr. Heidi [00:53:53] Yes. Yeah. And then it's like trial and error.

Maureen [00:53:58] And a place to start, a really good place to start.

Dr. Jess [00:54:01] Yeah. And I think it's really I think it is both those pieces. It's that experimenting and then watching for your response. So, so you're trying all the different things that might be what really gets your child's interests, watching to see what it is that really sparks that excitement, and then kind of building, building from those things.

Maureen [00:54:22] So now the Grover story?

Dr. Heidi [00:54:26] So now your own experimentation.

Dr. Jess [00:54:28] So the Grover story. So I think it's just an example maybe of um, I've been accused of being an eternal optimist, and so maybe it's true or maybe sort of the idea of sort of finding the silver lining in things that may not be, start seeming optimal. So in high school, I was teased by a young man for having a voice that sounded a little bit like Grover. And so I you know, I suppose that that could have hurt my feelings, but instead I kind of used it to my advantage and developed a little bit of a good Grover voice, which I probably won't do on this podcast. But it actually worked really well in terms of developing that bond that I talked about with that first little boy I worked with with autism because he loved, loved, loved reading. And we would read for hours and hours and hours, and we were, we we really bonded over reading. And then just, I don't know, by accident, we came across a Grover book and I was feeling relaxed and comfortable and safe, and I just tried my Grover voice and it really up'd the fun factor for this little guy, and he loved it. And honestly like it, it we already had a bit a bond, but it really kind of solidified that bond, and all he ever wanted from me for many years was for me to do my Grover voice and to read this particular book with that particular Grover voice, and then, of course, his his parents were amazing and bought all the different Grover books they could find. So, you know, I probably did my 10000 hours of practice of the Grover voice, but it really did, it was an example of sort of taking taking our relationship to the point where it was super, super fun, and it was then we were able to use it in all sorts of contexts. So when he got really distressed because the swimming pool was closed and he wasn't expecting it to be closed and he loved to swim, I could sort of help him get out of a real stressed out cycle of distress by bringing in the Grover voice. So, you know, there are, there, that was just kind of a fluke or a happenstance that I discovered that he loved it, and it really was something that we were able to build years of of fun and kind of skill development with.

Dr. Heidi [00:56:48] Thank goodness for Grover. For both you, Dr. Jess and Ian, do you find that there any, like, common misperceptions that parents have about their social their child's social communication?

Ian [00:57:04] I mean, for me, I hear a lot of social communication is well, he is social, right? And it's absolutely true, and as Jess said earlier, I think all communication is social. Not all speech is communication, but all communication, meaning all messages sent to another person are social. But there is kind of a a dimmer switch of social communication skills that can be turned on or off or not on or off, sorry, up or down, depending on how well developed those skills are, right. And so for me, I think that the term social communication sounds like this kind of very specific thing that is very abstract, I think it's very hard for people to understand, and as soon as they see a child go up to another person, he is social, therefore, that's not an issue for him, and really what we're talking about is a whole bunch of different skills that need to develop and to be coordinated with one another. And that's a really hard thing to, I think, conceptualize for people who aren't speech pathologists or psychologists.

Dr. Jess [00:58:18] Yeah, definately. What about you Dr. Jess?

Dr. Jess [00:58:22] I mean, I think it's similar to what Ian was talking about, where I think about social motivation. And I think that sort of if you're thinking about common misperceptions, I think, you know, I still hear from from professionals and from families that a child may be perceived not to have autism spectrum disorder because they're socially motivated, and that's sort of almost would would mean that it can't be autism. And I think, you know, back to Ian's point, that it's it's not, we see lots of kids with autism who are very socially motivated. So kids who love to come up to other people or love to engage with other people, but who have difficulty knowing sort of how to navigate that social world. So so I see social motivation as a huge asset for a lot of kids. So if you're socially motivated, that's a really great place to start, but kids with autism can be socially motivated.

Maureen [00:59:21] That integration that you were talking about earlier.

Dr. Jess [00:59:23] Yeah, exactly. And sort of navigating the social world in a way that's that's appropriate, that changes developmentally in an appropriate way, so, you know, a toddler who runs up to other toddlers at the park and hugs them, that's OK; a five year old or a six year old who does it, it's going to start feeling different, right. And so, yeah, so these things are nuanced and they need to be, and these skills need to be integrated, and we do think we really need to keep thinking from a developmental perspective, what are we sort of what are the developmental sort of not necessarily milestones, but the developmental achievements and sort of the path in development that we typically see, and and how can we help to support kids along that trajectory?

Dr. Heidi [01:00:15] Yeah. One of the things I often kind of reference is sometimes parents come in and they're almost like translators for their kids, so they've kind of like adapted so well to their child's communication skills, right, and the language that they're using. But then they kind of translate, oh, this is what he or she wants, and so there's not an opportunity for them to see like, OK, well, this strategy kind of falls apart in this different setting, right, and this is actually an area of difficulty or an area that we can improve upon.

Dr. Jess [01:00:50] But I think that really also speaks to that, that earlier part of this conversation where we talked about how resilient and flexible and creative these parents can be, right. So oftentimes parents do not realize how much they've been helping because it has come so naturally to them and they've grown in such a natural way with their child's developmental needs, that sort of it's not even apparent to anyone how much scaffolding or how much support that child is getting, and when you pull those supports back, particularly in the context of an assessment let's say, it can be really hard for parents the first time they see that, wow, I've really been helping a lot and when I pull away my help these are the challenges that my child is having.

Dr. Heidi [01:01:38] I think that's a really important way of looking at it.

Maureen [01:01:42] I actually have another question that is kind of a little bit away from what we're talking about that for Ian, what advice do you have for families with multiple languages, that speak multiple languages at home and are noticing delays in their child's development in language?

Ian [01:01:58] That's such a good question. It's a question that's had many answers over the years, and as more and more research is coming forward, the expectation now is that families use the languages of the home with their children. So if they are speaking multiple languages in the home, a child who is developing communication differently or more slowly than is expected should still continue to speak those multiple languages. That age is from a cultural point of view. Then those children need those languages for their family for the same reasons that anybody else would, so that's just necessary. But in fact, they're not learning multiple languages any more slowly than they're learning a single language. Now, what that means, though, is that a child who, let's say, has a capacity for learning a hundred words across two months let's say, those hundred words might be divided into two languages, and that means that they might be learning 50 concepts right, so if you learn the word for Apple in English and in another language, then they've learned Apple, which is one concept, but in two words, right, so it might happen more slowly, but over time, they're still learning what they need to learn. So it takes a little bit longer, but they ultimately get there. We also know that language is generally learned better the younger the child is, so for families who are wondering, should I use two languages now or wait until they've got English down and then add a second language, they're actually better off doing it now, even though there will be a slight delay in the number of concepts that they're learning, they're, the child is more available for that type of learning early on.

Maureen [01:03:43] OK, great. All right, that's helpful.  To both of you for parents on the waitlist what are some simple things that they can try at home to promote their child's social communication?

Dr. Jess [01:03:58] Can I start? I think the one that I, the one that I like the best is to help parents sort of think about ways to get a social routine going, and what I mean by that is sort of a playful, interactive game that can develop a little bit of a routine that sort of the child can learn this, this is how this goes most of the time. So common examples that we see with little ones might be peek-a-boo or a certain tickle game or things like that. And the advantage of those is that they can, again, it takes some experimentation and some flexibility, like what, which of these games is going to work best for my child and for me right? So every parent has different comfort levels with different things. Some parents love to sing, some parents do not feel comfortable singing, right. So finding something that's a fun match for you and your child that you enjoy doing that you could sustain for some period of time. So lifting kids high in the air is really fun, but some parents just, you know, find that extremely tiring, understandably. So kind of finding those routines where you can have some fun with some expectation, and then kind of thinking about being face to face in those activities. So is there if it's a fun tickle game can we do it when my child is lying on the bed on their back, or making sure that we're sort of face to face so that we can share those smiles and those those fun times, and in time sort of as those routines are developed and become kind of expected, and the child knows what the next turn is, then you can build in some sort of opportunities for communication. So sometimes it's very, very subtle, like you're going to have a I'm going to get you and a little tickle or a funny noise, and then sort of as that becomes a routine that the child knows and learns and enjoys, you can pause before the tickle and see whether they show you that they want the next thing to happen. So sometimes how they'll show you is they might look into your face, they might grab your arms, they might just move their body up and down in a way that shows I'm excited and I want the next thing. And that, to me, is kind of a really nice way to start in terms of building social connectedness and also very, very early communication.

Maureen [01:06:27] That's nice.

Ian [01:06:30] And I'll build on that. I think being fun is everything for a child, and so as parents, we have to balance the stuff that we have to do, changing diapers, getting dressed, washing hair, brushing teeth, with all the stuff that we want to do. And for parents who are feeling really taxed, that there's so many of these routines that result in resistance or friction or meltdowns and that sort of thing, it becomes, you know, you have to gird yourself for the next one of these, and then you need to recover. And I think my advice is to spend some time in that recovery period doing the fun stuff. Don't just be the bad guy. Also do the fun stuff with your kids so that they see you as somebody who can enhance their fun, enhance play so that they see that people enhance their activities, and that's where social communication really, really blossoms, when kids are able to see that their parents, their siblings, their teachers, the people in their lives can take can actually make their favorite activities even better.

Dr. Heidi [01:07:43] So this conversation has been great. Ian and Dr. Jess, you've certainly highlighted that social communication is more than words. Difficulties of these areas are frequently some of the first signs noticed on the journey to an ASD diagnosis. So thank you, Ian and Dr. Jess for chatting and helping us to learn, appreciate and engage in this episode of ASD Engage.

Dr. Heidi [01:08:14] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you've heard today, feel free to e-mail us at ASDEngage@hollandbloorview.ca.

Episode 5: Feeding and Eating in ASD - Kids have to eat and feeding is at the list of parents’ concerns

Dr. Heidi [00:00:11] Welcome to ASD Engage, a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.

Maureen [00:00:24] I'm Maureen Mosleh a psychometrist.

Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode we will present a topic that reflects concerns brought forward by families we work with.

Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.

Dr. Heidi [00:01:01] So in this episode of ASD Engage, we're tackling the topic of eating and feeding. According to Autism Speaks in 2018 a recent review of scientific studies found that children with autism are five times more likely to have mealtime challenges, such as extremely narrow food selections, ritualistic eating behaviors and meal related tantrums. Joining us to talk about these issues today are developmental pediatrician Dr. Sharon Smile and occupational therapist Christie Raffaele. Welcome, and thank you both so much for joining us today.

Dr. Smile [00:01:37] No problem. Hi, Podcast World.

Christie [00:01:41] Thanks for having me.

Dr. Heidi [00:01:44] So, Christie, occupational therapy is tied to a bunch of different services. I know that I often have a hard time describing what an occupational therapist does. Can you explain it for us?

Christie [00:01:55] Sure, it's a great question and a lot of people also get confused about what we do, especially when we talk about working as occupational therapists with children. The first thing you have to do is to rethink the word occupation; so most of us think of that word as relating to a job or a career, when really occupational therapists, we refer to occupation as anything that we do in a day to occupy ourselves. And we categorized those all those activities into sort of three big areas: self care, so anything that you do on a day to take care of yourself, such as eating, dressing and going to the bathroom. Productivity, which for an adult could be work, but for children it could be learning. And leisure, which for children is play. So for for me, working as an occupational therapist with children, I look at all of those areas. Just not looking at it as a career, but more of categorizing things as occupations into those two categories.

Dr. Heidi [00:02:56] So, Christie, how did you get into feeding services in particular?

Christie [00:03:02] So I started out working in the community with children and quickly realized that now kids have to eat, obviously, and feeding is at the top of parents with those concerns and things that they worry about with their children, whether they're typically developing or whether they have some kind of developmental challenge. And so I sort of quickly realized that I needed to better educate myself on aspects of feeding and be able to help parents address these concerns.

Dr. Heidi [00:03:34] Yeah. And Dr. Smile, so Christie kind of touched on this, why does the topic of feeding come up so much in the context of ASD?

Dr. Smile [00:03:42] We know that feeding difficulties, the prevalence or the presence of feeding challenges in kids with autism spectrum disorder is quite varied, so up to forty nine to as max of eighty nine percent of kids will identify as having some feeding challenge, and that could range from picky eating or not, or textural difficulties, difficulty with sensory characteristics of foods which could later lead to some health risks such as obesity as well as nutritional deficiencies. It is a problem, but as Christie says, it's one of the things that kids should do, and I find that mostly when families are coming in for an assessment that we're very focused on that social and communication aspect of that child and try to get interventions to close that gap. And what parents tend to do is in the meantime, they just feed as depending on what their child likes, and it's not necessarily a priority because there are bigger priorities at the moment, which could be getting your child to speak. But it exists. And as Christie had said earlier on in the community, especially for preschoolers, we the feeding challenge is always there, and it presents sometimes at that one year of age or when they're transitioning from liquids to solid foods or any transition process in their dietary intake. However, parents are able to compensate, right? They find other mechanisms to support them. And then once they've reached school age years when they're now with their peers and at school and around lunchtime, feeding becomes more of a challenge, right? Because they are no longer able to have the Pediasure for the lunch or multiple times per day, and they look different from their peers. And then the question comes up, how can we help?

Dr. Heidi [00:05:52] Yeah, I want to I want to explore that a little bit later in our interview. Dr. Smile, how did you become interested specifically in the topic of feeding and ASD?

Dr. Smile [00:06:04] I love food. I'm a real carnovire and Christie knows this I say that all the time, I'm a true meat eater, and it gives me pleasure to eat. But I think in the, in my clinical work, in doing our history with families, recognizing that, we'll ask how is your child eating? And when I go through a 24 hour food diary call by parents recognizing that this kid is not necessarily having all the food groups that they should and puts him at risk for iron deficiency, anemia; or parents are compensating by giving lots of juice, lots of Pediasure or milk, and I'm wondering, how can we why is this happening? And I think based on that, trying to figure out what intervention would be appropriate, recognize that we don't really have a good hold or understanding of feeding difficulties in preschoolers especially. And I wanted to come at it from a preventative lens, so if we know it's going to happen, how can I prevent this? What are the factors that are driving this? And that's what led us into connecting with the feeding program here at Holland Bloorview to try to figure out what's happening and how we could support our families.

Dr. Heidi [00:07:18] So, Christie, can you give us a sense of what mealtimes often look like with the families that you work with?

Christie [00:07:26] Great question. Obviously, every every family is different so mealtimes are going to look different depending on whose home you might peek in to at any given time. But there's definitely themes;  there's a lot of anxiety around meal times for a lot of families, particularly families that are in the mode of trying to get their child to follow mealtime routine or trying to get them to try and use food. So there's definitely anxiety for some families. And there's other families who are, you know, sort of in survival mode and they've almost, you know, decided that OK this is the way it is, and sometimes that just looks like the child or the family you know following the child around with a spoon trying to feed them or, you know, having the child eat in front of, you know, on the couch in front of the TV or in front of an iPod, and sort of being very restricted to just a few different food choices.

Dr. Heidi [00:08:27] Yeah. What are some of the common problems with eating and feeding that you see in the children that you're working with?

Christie [00:08:34] Well, I think like Dr. Smile talked about, we see, you know, definite themes of, you know, limited food repertoire. So children preferring only, you know, very few food from each food group or maybe not having food from certain food groups all together or being very brand specific, so, you know, preferring soft food, nuggets or fries versus, you know, ones that might be able to be made at home. So there's definitely a patterns that we see there. There's also patterns of, you know, being resistant to following a routine, so not sitting at the table, sort of wandering around, getting up frequently, as well as refusal behaviors. So things like screaming, tantrums, gagging, pushing the food away when parents are trying to offer new foods.

Dr. Heidi [00:09:26] Yeah. So you touched on them seeing patterns, right, in terms of like patterns related to the brands of foods that they might be eating or patterns of behavior and stuff like that, Thinking Dr. Smilde had mentioned specifically picky eating that children might present, do you often see patterns related to the kinds of picky eating that a child's showing?

Christie [00:09:49] Yeah, I mean, we've there's there's a few different patterns that I think are well documented in the literature in terms of children that are gravitating towards carb heavy foods, so things like breads and cereals and crackers and things like that. Definitely the fast food pattern, I think, is something that we see. I think it's predictable. And there's also a category of kids who really have challenges transitioning to more solid food. So they would stay on purees, or drink smoothies just fine, but have difficulty transitioning to foods that need to be chewed or more difficult to eat.

Dr. Heidi [00:10:29] Yeah, I've seen some cases, too, where kids, they like their food plain. So like no sauces, no condiments, like the planer the better, is that like a frequent pattern too?

Christie [00:10:43] Yeah, definitely. And I think that has to do with the fact that, you know, a lot of kids that are on the spectrum tend to be very sensitive to different smells, textures, tastes, the way things look. And food is undoubtedly a really sensory experience. And so I think sometimes the simpler the food is, the less complicated it is for kids to process. So it's easier to eat a plain pasta noodle and be able to predict what that's going to taste and feel and smell like and look like as opposed to having different sauces on it each time.

Dr. Heidi [00:11:19] That's a really great way of looking at it. At the top of the interview, I mentioned ritualistic eating behaviors, which sounds like a very fancy term. But what kind of behaviors would that include?

Christie [00:11:33] So I think I've seen, you know, everything from needing to sit in the same spot each time having food, you know, have to be served on a certain plate or cut in a certain way, or one where I think a lot of parents can relate to is that foods can't be touching one another on the plate or, you know, kids have to have the same TV show on each time they eat. So I think it it ranges depending, obviously, on the child and how rigid their behaviors are.

Dr. Heidi [00:12:10] Mm hmm. And so think about that picky eating and those behaviors. How do you help families deal with those kinds of issues?

Christie [00:12:20] So I think we have to look at why are those behaviors happening, we always have to look at the function of a behavior. And for some parents sometimes that's hard to do and that's where professionals can come in. So people who have you know experience in feeding like myself, or behavior analysts who are particularly skilled at looking at or trying to determine the function of a behavior. And I think a lot of, you know, what I've seen in kids is their insistence on sameness around food or their resistance to trying new foods really relate to anxiety, and not knowing what that new food is going to taste like. And, so rather than dive into that scary bite of food, it's easier just to stick with what we know, and what we like and everything will be OK. So I think a lot of times it's anxiety that is appearing to parents as defiance and refusal behavior.

Dr. Smile [00:13:22] Tagging on with Christie, even though anxiety may be driving it and their behaviors that we see, we have to look at a holistic pattern, right? And see what factors are driving that feeding behavior or challenges with transitioning to new foods or increasing food variety or repertoire. And what we've learned from experience, and this is through multiple parent workshops and doing research, is that there are different levels that we need to look at, there are medical issues that need to be looked at, and for Christie and anyone working in feeding, looking at dysphasia, where there's difficulty with swallowing or chewing foods, one, we have to rule that out as well as constipation and hydration factors into those factors or factors into food selectivity and oral motor difficulties chewing, what's happening with the mouth may also impact on why that child is not eating. Behavior, as Christie brought out, are we having mealtime routines? Is there a schedule in place? Are there expectations placed? Sensory issues which occupational therapists will manage and there are different research intervention protocols that are available for that. And then there's this environmental factor that is important. And finally, parent child interactions. That's really important. What are parents expectations? We need to look at the child's developmental level, to look at what should we really be expecting for this child? Is purees appropriate because their oral motor function is at a level where only pureed foods are accepted, and if we're trying to transition to solid, it will not be successful. So I think it's having an overall picture of that child's feeding pattern and developmental profile is going to be useful. And looking at what's happening at the home environment and that parent child interaction and Christie's correct, anxiety drives a lot of the difficulty that we see.

Christie [00:15:25] You know, alot of times we talk about, you know, parents come and talk to us about a feeding problem. And I think, you know, Dr. Smile just said we really learned to try to look at that feeding problem and unpack it and look at what is actually, what are some of the underlying factors that are leading to that quote unquote feeding problem. And that's why we sort of, you know, have learned to look at the feeding problem through a different lens, and kind of go through the list of things. So is it a medical issue? Are there any oral motor concerns? Are there behavior issues, you know, challenges, things like that? So I think it's more of a systematic way of trying to unpack what is really underneath and contributing to the feeding issue. So that drives where we go in terms of trying to help.

Dr. Heidi [00:16:11] Yeah, I think that that's a really comprehensive way of describing it. I know a lot of times in psychology, when we're thinking about like what is the behavior we see, often we'll use the the visual of like a mountain. So the mountain is kind of like at the surface and you're seeing that. And so in terms of eating and feeding, parents might be noticing like the noncompliance or the defiance around eating issues, right. Or like wanting to stick to particular foods and that sameness that you were talking about, Christie. But then the necessity of actually looking underneath, so what's below the surface of that mountain that might be contributing to what you're seeing. Thinking about that Christie, what do we, like I mean, can you speak to a little bit about the sensory sensitivities that might be a player at root at some of the eating difficulties that we see?

Christie [00:17:06] Yeah, that's a great question. So I think we know that a lot of children with ASD do have sensory sensitivities, and beyond that they tend to process sensory information differently. So they may, you know, taste things differently or more strongly or smell things differently or more strongly than someone else. And so, you know, given that eating is a pretty sensory experience that involves all of our senses, I think sometimes, you know, when we have, when kids have an oversensitivity to something, they may want to avoid that certain food; sometimes the smell of, you know, someone else eating at the table is just too much, and it makes that child not want to be at the table. And those things are challenging, especially if the child doesn't yet have the verbal skills to be able to explain that, you know, that I'm leaving the table because I don't like the way that my brother's food smells, or there's too many different smells in the classroom at lunchtime, and so it's easier for me just to try to escape the classroom. So it makes it harder for for parents and caregivers to try to be detectives about what is driving the child's, you know, what is causing this behavior is when really it may be an underlying sensory issue.

Dr. Heidi [00:18:25] So I've heard a bit about sensory sensitivities tied to the idea of hyper arousal vs. hypo arousal. Could you explain a little bit like what that means?

Christie [00:18:41] So it just basically means that, so you can either be hyper sensitive, so oversensitive to something or undersenstive. So we talked about the oversensitive, where you just want to avoid something undersensistive might mean, you know, that you have a whole lot of food in your mouth and you keep putting more in because you're not, your mouth doesn't give you the signal to let you know that it's still something in there, so you might be kids overstuffing or trying to swallow food before they've actually fully chewed it, or those kinds of things.

Dr. Heidi [00:19:14] Yeah, I know, like sometimes in feedbacks, if a child that I've been assessing is showing, like sensory sensitivities, I try to give a parent a sense of how then their child's experience of the world is different from theirs, right. Because a lot of times we, it's hard to put yourself in somebody else's shoes, right. So I don't have a good example for feeding persay, and if you do. Christie, let me know, but I often use the example for auditory information. So sound can often be one of those areas that kids are sensitive to. So oftentimes when I'm talking to parents, I'll be talking about like we, we seem to be on the same wavelength in terms of how we're processing this conversation, listening to this auditory information. And so we're focused on then what each other is saying and then processing the language and trying to comprehend the conversation. But for somebody who is very sensitive to sound, they might be hearing that white noise of the light bulb in the background. And when they're really focused on that, that could be really disregulating, right. So how do you, if they're really tuned into a slight sound that you aren't and I aren't necessarily tuned into, then that could be really dysregulating, right. So they might not be picking up as much about the environment or in the same way that we are.

Christie [00:20:38] Right, and I think how you can apply that notion to feeding is that it can explain why kids, you know, move towards certain foods and away from other foods. You know, if you want to continue with your example of sound, I remember one little guy who didn't like chewing crunchy foods because when he crunched it, it was too loud. And it's something that we don't think about when we are eating. We don't think about the sounds that we are hearing as we're chewing because that's not really what our brain is in tune with. But for kids that are particularly sensitive to sound like this little guy that I'm thinking of, you know, things like raw carrots, or chips, or pretzels was too loud in his head. And so he preferred to eat softer food.

Dr. Smile [00:21:22] And I think this is why it's important if we have a client who is able to describe their experience with food, it's important that they also contribute to an assessment and not only using what parents have identified as being challenging, but asking. And I think, Christie, I can reflect on one of our clients who the goal was to eat strawberries, but he explained that when he ate strawberries, it felt like he was eating sand because the way he experienced the pits in the strawberry was like grains of sand. And why would I want to eat that? All right? So based on that strawberries out.

Dr. Heidi [00:22:00] Right. Yeah. And probably like thinking about a strawberry in a way that you or I wouldn't think about the taste or that processing of it. So, Christie, when we're asking about mealtimes in assessment or are thinking about them in intervention, we're really considering a range of behaviors, aren't we?

Christie [00:22:19] Oh, absolutely.

Dr. Heidi [00:22:20] What kind of, so in addition to kind of like the picky eating or those ritualistic behaviors, what other kinds of things are on your radar?

Christie [00:22:31] I'm looking at, you know, the whole mealtime environment. So, you know, where is the child eating, you know? Are they hungry when they come to the table or have they been grazing all day long? You know, parents are trying to get food in, which then sort of sets up for a meal time that doesn't go so well, then the child only eats three bites of food because they're not hungry.

Dr. Smile [00:22:55] I think mealtime behaviors could be difficult, especially if we have electronics available. So getting the kid attending to the food and participating in that family, sitting at the table, meal time might be challenging, and so some of the things that we look for are opportunities to make it more pleasurable.

Dr. Heidi [00:23:13] I think also in the families that I work with too, a lot of times, like putting into the context of meal time, like try not to make assumptions about, say, fine motor skills, like in certain families, right, the expectation, like they're eating foods that are more finger foods. So if I'm asking about like and can the child use a spoon or a fork, it's probably not as relevant for that particular family, based on what their mealtime is like. I think there can also be a lot of differences too, in terms of expectations around staying at the table. And a lot of I see a lot of fights that happen around like, no, you need to be still when maybe the focus should be on on the eating piece of it, and yeah, there's going to be some movement.

Dr. Smile [00:24:02] I'll probably start and then ask Christie to elaborate. I think in our experience, what we've found, there has to be some amount of parent education about what is expected, right. And for any task there is these prerequisite skills, right. If I'm asking someone to sit at a table, can they attend to sitting at the table for a period of time? If that's not necessarily a realistic goal, that we have to take a step back and start at a different expectation.

Christie [00:24:32] So I think it goes along with that idea of how do we help parents to tackle these issues, and, you know, the idea that we first try to help identify what are these underlying factors that might be contributing and then where do we start with trying to make some changes? And whenever we try to, you know, implement a new strategy, we want to make sure that it's a small enough step or we're making a small enough change, that everyone's going to experience success pretty quickly. So, you know, even though a parent might come to me and say, I want to work on expanding my child's diet, getting them to try new food, I might say, OK, that's a good long term goal, but what are some things that we need to work on first in order to make that long term goal more likely to be successful? And so, you know, a lot of times it might have to do with, you know, just getting the child a booster seat so that they have a place to sit at the table where it's not as convenient for them to hop up and down and run around during the meal time. And we might start out with just having that child in the booster seat for, you know, one minute a day, to eat a preferred food, or two minutes a day to eat a preferred food. So we would take really small baby steps and, so that everyone is experiencing success and then work towards that longer term goal of getting the child to try new foods.

Dr. Heidi [00:26:01] So really building them up over time.

Dr. Smile [00:26:04] Right. And parents having their, and for the treatment of it as well is parent education. I keep coming back to that because I think we have to ensure that parents understand where that child's developmental level is at, what is our expectations for eating, as well as how to support them in their response to the child refusing a food, or even when they do accept a desired food item. How do we celebrate that? How do we leverage that to go to the next step? So in any intervention, when it comes to a child with feeding challenges, parents are integral in success. And we're going to have to change parents behavior as well.

Dr. Heidi [00:26:52] Do you ever find that there are any common misperceptions that parents have about their child's feeding or eating difficulties? And maybe we'll start with you, Dr. Smile.

Dr. Smile [00:27:04] It's their fault. They're a bad parent or I didn't pay attention to this. And that's really hard to hear because again, with autism spectrum disorder, everything, development is fluid, it moves, it changes with time. And feeding is dependent on many external factors that sometimes we have no control over. Another misconception is that if I just have 12 weeks of intervention or participate in an intervention program, this is gonna be solved. And that's a misperception because feeding challenges is something that is a long term challenge that a child will have. And Christine can speak a tad bit about this. And I always refer back to her when she says I can teach, I can try to get your child to accept a particular food item, but he may not. I can't change the sensory responses they have to a food so we could tolerate. So we're really working at flexibility, the child's flexibility around accepting new foods. And sometimes we have to have these honest and open discussion with parents. What is the real treatment for food selectivity? If the child is nutritionally adequate and we're not concerned about any micro nutrition deficiencies, then we can take goals one step at a time. So small goals slowly over a period of time. Christie?

Christie [00:28:39] Yeah. So for me, you know, as Dr Smile says my mantra to parents and therapists and whoever will listen is you can never make a child or anybody, for that matter, like a particular food. But what we can do is find different strategies that might help somebody to be more willing to try new foods. And so as soon as we find that strategy, or oftentimes it's a different toolbox of strategies, to help someone become more willing to try new foods, it opens the door to them accidentally finding a food that they might actually like or be able to tolerate. And I think that if we can help parents to reframe how they look at success with their kids when they're working on feeding into that sort of a way, that success doesn't mean they're going to eat 20 new foods tomorrow, but success might mean that they will try different foods than I think it helps parents to sort of stop looking for the magic, you know, therapy that's going to enable a child to eat at the buffet tomorrow.

Dr. Heidi [00:29:53] That's great. I think this has like been something that's threaded through all the responses in our conversation since we started the interview. But eating and feeding are emotional topics, aren't they?

Christie [00:30:08] Oh, absolutely. I mean, you know, I think Dr. Smile started by saying she loves to eat. I don't particularly love to eat. It's just not my favorite thing to do, and I think, you know, for a lot of families and different cultures, food is an integral part of a family celebration and cultural celebration. And so, you know, first and foremost, parents want to make sure that their kids are, you know, nutritious, you know, getting the right nutrition and that they're healthy. But they also have a really strong desire to want their child to enjoy eating so that they can participate in these important family events. And it's not to say that that's not a good goal, but I think sometimes we do have to help families to understand that, you know, their child may not enjoy eating. And I think we've heard, you know, especially recently out there in the autism world where there is, you know, older children and adults who have described in quite a lot of detail why it is that they don't like to eat. And so it's also, you know, helping parents to kind of reframe, you know, what might be a realistic goal and what might they be okay with, and how can their child still enjoy a birthday party without necessarily enjoying the cake that we assume they're always going to enjoy.

Dr. Smile [00:31:37] And for us to be present as parents for when that opportunity arises and that child would like to trial something that is new, that we're open to support them during that experience as well.

Dr. Heidi [00:31:51] Yeah Dr. Smile, you were mentioning kind of like misconceptions that parents might have and you kind of went to the the self blame, right, that parents might get at. And really, in a lot of ways, I find like parents like something about feeding your child is almost like very integral to the rule of I'm a parent. I keep my child, like, nourished with this food. And then when that's not working out, that reflects on me.

Dr. Smile [00:32:19] So if we think of post delivery, the next step is what, breastfeeding or bottle feeding. And there is that bonding mechanism that happens and that attachment that happens. And I think for some families, it's a rite of passage, right, for parents to be able to support their child in whatever it needs, right. Similarly, providing shelter, security, feeding is also an element. And when that is taken away from you or you feel that you're not able to support your child with a balanced, diet, it could be devastating to parents. And, as Christie said, you know, we can always identify when there's a challenge, but then we have to reimagine how can we then support and support families to say, hey, you're doing the best that you can. We know this is a challenge. These are strategies that we could trial and be there with them while we're trying the different strategies to see which works to help to support this child's nutrition. But it is from breast to bottle.

Dr. Heidi [00:33:29] Is that sometimes like the first time a parent might be getting that message, you're trying the best that you can? I think of like some families where, you know, there are kind of differences in the rule or the responsibilities that each parent takes on, so somebody becomes responsible for the feeding, and when the feeding becomes difficult, the rest of the family is like, hey, what's going on? Like, why can't you do this?

Dr. Smile [00:33:59] And I think everyone loves you know, Grandma loves the child, Grandpa loves the child, aunts, uncles, and they will offer their opinion on parenting skills as well as feeding skills, and it will be challenging for a parent who is struggling with feeding. And then we have the societal implications as well, expectations, what you see on the media, Facebook, parenting magazines, and it can be daunting at times. However, when I do see families, I say: guess what, Johnny, his weight is OK. His height is OK, right. Nutritionally, we're not concerned about any deficiencies, and so having that awareness to have that discussion in an investigation when it's indicated, sometimes we'll get that pressure off the parent. OK, medically, he's OK. What's the next step? Then working with clinicians like Christie and speech language pathologists, as well as behavioral analysts to then figure out what strategies will be important to get Johnny to the next level.

Dr. Heidi [00:35:03] Yeah, I'm sure that goes a long way to help to help parental stress to to lower it. Christie, is there anything that you do to help alleviate the parental stress around their child's eating?

Christie [00:35:15] Yeah, for me, it's really helping parents to once again try to break down what are some things that might be contributing and how can we tackle it? It's giving parents a plan because a lot of times, you know, it just seems like this massive mountain in front of them and I don't know how to tackle it. And so I think a lot of times if parents can, you know, have some reassurance like Dr. Smile says like it's not their fault. And, you know, help them understand the reasons why this might be happening and give them permission to accept that the fact that their child's eating experience might be different than the other kids, that the birthday party or the cousins that come over on Sunday or whatever it might be, and then to give them some tools to help come up with a plan to try to make it better.

Dr. Heidi [00:36:07] So and that ties in nicely to to think about it, like when a child starts day care or school and then eating is an activity that's supposed to happen in these other settings, does that sometimes create additional challenges for the picky eaters and their families?

Christie [00:36:22] I think it's a huge source of anxiety for parents when they have to make a choice about sending their child to daycare or whether it's time for their child to go off to school because they worry about whether their child might eat in a different environment, and how they might be judged, frankly, when they go into those different environments, because, you know, if the child only eats you know, Ritz crackers and cheese strings, you know, and that's all they bring everyday to school, parents worry that it's going to reflect on their parenting abilities rather than being a reflection of their child's eating challenges.

Dr. Smile [00:37:03] Yeah. I just wanted to add that, yes, there's this judgmental factor that's there where it's important for parents to have discussion with their school, the teachers or daycare providers, if they're finding that their child is struggling with eating, because they could also be partners in the management, right. And the blame game and judging a family because a child is struggling is not supportive and helpful.

Dr. Heidi [00:37:37] So, Dr. Smile, parents may be concerned that their child isn't getting enough nutrition and sustenance when he or she is really limited in what they will eat, and you kind of alluded to that earlier. What should parents be looking for as red flags that that might be the case, and that their child's health is at risk? And then what should they do with that information?

Dr. Smile [00:37:58] So it's important to look at the kinds of food your child is eating and any supplements that they're also taking. So big items, most of our kids don't like to eat vegetables and some kids may not like to eat meats like red meat. So if I have a client who is not having green leafy vegetables or red meats in their diet, I'm worried about iron deficiency anemia. So it's looking at doing a 24 hour data recall. If a parent is recognizing that they're supplementing their child, is drinking milk primarily and having crackers primarily for their diet, that discussion should be had with their family physician or pediatrician and have a consultation with a dietician to look at calorie intake as well as nutritional intake. There, commonly we'll see iron deficiency or iron deficiency anemia if it's severe enough, there's zinc depletion, noted protein, we have calcium as well identified in kids with autism spectrum disorder and feeding difficulties, but you may not have clinical manifestations, so you have to have a high index of suspicion, and that starts with in the family physicians or pediatricians office by doing a food recall and seeing whether or not the child is doing well. Most kids will have normal growth patterns, so that means weight and height measurements are within a nice developmental trajectory. However, if a child is losing weight or the diet is becoming more restricted over time, parents should have that discussion with their pediatrician, and as such, then blood investigations will be done to identify any nutritional deficiencies. But it's a high index of suspicion that's needed.

Dr. Heidi [00:39:48] It's good to keep track of. So, Christie, I guess what I'm wondering is, do these issues do they get better with intervention?

Christie [00:40:00] Oh, absolutely. I think, you know, again, every child is different, and I think that it's so important to individualize intervention for a particular child and family and to not sort of use a cookie cutter approach and say that, you know, every child that presents with food selectivity needs to have this intervention or that intervention. So, you know, I think the situation where I've seen the biggest change happens when the family and the child are sort of ready to tackle these challenges because they're not easy. And to take the small step towards, you know, achieving bigger goals.

Dr. Smile [00:40:48] Just like the autism spectrum is along this continuum, similarly, feeding is that continuum, right. So we can have kids were having milder food selectivity, who nutritionally they're well, participating in activities, and really and truly, they don't need a multidisciplinary team assessment to come up with strategies to deal with that. Parents need some guidance as to how to support and present foods over time. But then we have this other group who's on the other end of the spectrum where they're quite restricted, it's impacting on their nutrition, so they're presenting with nutritional deficiencies. They may have changes in their weight or height, so affecting growth and its impacts on their psychosocial functioning in the community. So they're not able to go to birthday parties because kids are quite anxious about being presented with foods, or they may have to leave school to go home to have lunch because they're so overwhelmed within their academic setting. And if this is not deemed secondary to any cultural practices or that child is not having insight into body image challenges, we have to then think of a condition that's called avoidant restricted food intake disorder, of which there's an intervention program that's primarily behavioral based, cognitive behavioral based therapy for that, and some of our kids may meet that criteria, and as such, should be assessed appropriately and referred to the right health care professionals to manage that presentation.

Christie [00:42:22] Yeah. And I think I'll just add that I think the way that I would, you know, explain to a parent if they say, you know, can we fix this problem or can we cure this? You know, I think I often find myself talking to families about the fact that this is a life long journey because, you know, again, we're you know, the goal is not that in 12 weeks, the child is going to eat, you know, 20 or 50 foods, it's back to that goal of the child being willing to try. And that willingness to try is going to need to continue throughout life until, you know, they reach a certain point where they feel like you've got enough foods. But there's not a quick fix, there's not sort of a, you know, a one cure or one program. It really is a life long, long term process. It's a different way of looking at it I guess.

Dr. Smile [00:43:18] Yeah. And kids will add as well as remove foods over time, right.

Christie [00:43:23] As we all do.

Dr. Smile [00:43:25] As we all do.

Dr. Heidi [00:43:26] You know, Christie, compared to when you first started working with children with ASD, have any of your perspectives changed in the way you think about the topic of eating and feeding?

Christie [00:43:40] Definitely. You know, I think for me, it's when I first started, like any, you know, young and energetic therapist, I was looking for the quick fix, you know, reading the research, where's the intervention program that's going to make eating better? And I think I just heard and interacted with and had experiences with so many families over the years that had tried all kinds of different therapy programs and they didn't work. And I think it was that experience of constantly having conversations with families where they would say, I tried this, I tried this, I tried this, it didn't work, it didn't work, it didn't work. That sort of led me to think, OK, we have to actually think about feeding differently. And that goes back to that you are trying to be a detective and figure out, OK, let's not look at the top of the mountain, you know as the feeding problem, let's look at the things that might be contributing to this. I think that's probably been the biggest thing that has changed for me over the years, working with this population.

Dr. Smile [00:44:48] Yeah. And what about for you, Dr. Smile?

Dr. Smile [00:44:51] I think in working with the population, as well as Christie and Rebecca, and our behavioral analyst in a research capacity, one thing that I paused often to reflect on is are we asking the right questions? And then I also pause and think, are we defining success appropriately for families who are going through this journey? So for many of times we look at our primary outcome measure being number of foods, is that really clinically useful and meaningful, or should we be looking more at parent child factors, building that, supporting that and see how that in itself, if that's more enriched and a pleasurable environment would that then translate to wider food variety, or increased number of foods? So the population has challenged me to think differently about feeding, and to see how else we could collaborate with parents, clinicians to think through what is truly happening with this child. And for kids who are able to voice their own opinion, hear from them, how they're feeling and experiencing it. And is it a bother to us versus a bother to them? So perspective taking, I think, has been something that I've learned during this journey.

Dr. Heidi [00:46:16] So a question that I'm going to throw out to both of you as well, for parents who are listening and are struggling with feeding, is there one thing that they could start working on right now to help their child and maybe start off with you, Cirstie?

Christie [00:46:30] So I think that I would tell parents to, or suggest to parents to try not to jump right to be trying new foods right away. I would, you know, have parents to kind of sit down and try to be a detective and really look at, you know, can my, is my child willing to learn new things or participate in new things in other aspects of their life? You know, I often you know, talk to parents about the fact that if you think of degrees of difficulty, asking a child to try a new food is really, really high up on the list of difficult things to do. And so I often ask parents how the rest of their day goes. So if a parent tells me, you know, that they have to, you know, fight a tantruming child to get them to put their boots on in the morning, which is a relatively easy degree of difficulty, then I'm probably not going to suggest that they start working on the highest degree of difficulty, which is feeding. So I'll sort of ask parents before they dive into feeding to sort of take a step back and be a little bit of a detective and do an assessment of their own situation, and decide whether their prerequisite things are in place before they can, before they might be successful with working on feeding.

Dr. Heidi [00:47:55] So being a detective. And what about you, Dr. Smile?

Dr. Smile [00:48:01] I, one thing I would say is not to force feed your child, because that place a negative experience to, or associates food with a negative experience, and then we'll have to try to overcome that exposure, which can be difficult. I think if parents are concerned about their child's feeding, start that conversation with your family physician or pediatrician, and that person will help with networking with, or bringing in other clinicians, such as a dietician, an occupational therapist or speech and language pathologist and not working in isolation, but collaborating, and as Christie said, trying to figure out what's driving this feeding challenge. So I think if we're as I said in Covid 19, if we're in this, we're in this together, and feeding is a togetherness sport, right? It's not parents versus the world and child. It's us all coming together, working and trying strategies to see which one works best for that child. And not all strategies will work, and having a personalized type of view of intervention strategies is going to be key.

Dr. Heidi [00:49:13] Yes, so those are really useful and concrete strategies. Dr. Smile you touched on something,  we're actually recording this episode during the Cauvid 19 pandemic, right now with that pandemic going on should parents be thinking about their child's eating differently or having different expectations or goals?

Christie [00:49:35] Yes. So I think what I would tell parents right now, as we're talking in the midst of the Covid 19 pandemic, would be to try not to embark on anything new right now in terms of feeding, you know, just try to keep the boat afloat, as we're all trying to do and keep expectations low. Don't try to implement a new feeding program or new strategies right now. And I think, you know, right now it's difficult to know when you might be able to go grocery shopping or to even be guaranteed that, you know, your child's particular brand of something might be available right now, and so I think, you know, do the best you can right now. And, you know, if you don't have your child's particular favorite food today, but you know that you will have it on Saturday, it's OK to say that we don't have it today, but you can even you know count how many days, in three more days you'll have your your favorite food or we'll be able to have pizza or whatever it is, just to help kids to feel less anxious about the fact that they don't have it right now. But they might have an idea of when it's coming.

Dr. Smile [00:50:46] And I think now would be a good opportunity for one, that surveillance that Christie spoke about documenting what's your child actually eating, because when you do seek out help by your family physician or pediatrician, they're going to want to know, do a data recall. But there are other principles that could be helpful during this time. Just having a schedule, having mealtimes together as we're all in the same home, trying to work on those skills or ensuring that that is in place, those are prerequisite skills for tackling feeding in kids or youth. So if we can establish that during this period, that would be helpful.

Dr. Heidi [00:51:28] That's great. So I think we're going to wrap up at this point. So, Dr. Smile and Christie, it's been really interesting to explore all things eating and feeding with you. For people tuning into this episode, we'd love to hear from you if you have comments, questions or suggestions for discussion that you'd like to hear in our podcast, feel free to email us at ASDengage@hollandbloorview.ca.

Episode 6: The Power of Play

Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.

Maureen [00:00:24] I'm Maureen Mosleh a psychometrist.

Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.

Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.

Shawn [00:01:02] In today's episode, we focus on the power of play, an important topic that often doesn't get much discussion. Yet research shows that children playing with parents and peers is key to developing bodies, brains and social bonds. It can help with language, math, managing emotions, social skills, planning and organizing. We're going to be talking about play and ASD with two guests today, Megan Lynch and Simmy Kassam, both occupational therapists at Holland Bloorview Kids Rehab Hospital. Thank you both for joining us today.

Megan [00:01:41] Thank you for having us.

Simmy [00:01:41] Good to be here

Shawn [00:01:41] Can you start off by explaining what you do here at Holland Bloorview and how you got involved with the ASD population?

Simmy [00:01:48] Sure. OK, I'll start. This is Simmy. I am an occupational therapist in the Child Development Program on the Communication, Learning and Behavior Team. And it's strictly a diagnostic clinic, so our role is assessment and consultation. And because I primarily work with families of children under five years old, a lot of my work is more around observing a child in the session and a lot of it is more consultative with the parent, whether I'm looking at a child's sensory processing skills, their motor skills or their play skills. And so a lot of it is just interviewing the parent, watching the child, how they interact and sort of listening for different areas of development. And then I'll bring them back, if necessary, to do a follow up consultation to see, to explain the strategies that I'm recommending and to see if that's feasible that they can actually do them in their home, and to give them strategies they can also implement as they progress in the school system. And so that's pretty much...And how I got involved in ASD, well, that's a long I don't really want to take up your whole podcast. I always say that pediatrics chose me. I didn't choose it. I happened to move to New York a long time ago and the only positions there were in the school system. So I had been four years out of university. I was only working with adults and geriatric population, and I basically went to New York, got a job in the school system and had to learn on the job. And I've never looked back. And so I had to work with children with Developmental Disorders, ASD. And and then when I came back to Toronto, I was fortunate to work in a private practice with an excellent occupational therapist who is very, very experienced in sensory processing and predominantly a lot of the clientele there were of the ASD population, so I got to see do a lot of intervention that way. And then at Holland Bloorview, just working on this developmental team is more diagnostic and consultative. So I've done a bit of intervention, a bit of assessment, and I would say for me, I really love working with the families. That's really a passion of mine and giving them the tools to be able to interact and and play with their child.

Shawn [00:04:24] Megan?

Megan [00:04:24] Great tough to follow that. So, yeah, so as Simmy said I'm an occupational therapist here as well in the Child Development Program. I've been on the Communication, Learning & Behavior team for probably over ten years now. So my role is very similar to what Simmy described, so working with the families, providing recommendations, strategies, ways to support their child at home, also at school. For me, getting into working with children with autism, it was, I started with a family many years ago before I was even an occupational therapist, before I even knew what an occupational therapist was, I was working with a family in their home and they actually had three sons with autism. So I got to be right, right in their home life, got to see day to day what that looked like, and that really sort of built that connection for me. And then once I became an occupational therapist, that was sort of where my focus always was. I always knew I wanted to work with children and particularly children with with autism.

Megan [00:05:26] And so we connected with both of you for this episode on play, in part because you work as partners to facilitate workshops about play that are geared towards parents. Could you tell us a bit about that work that you do with parents?

Megan [00:05:39] Sure.

Simmy [00:05:40] Sure.

Megan [00:05:41] Do you want me to start?

Simmy [00:05:41] Sure. Yeah.

Megan [00:05:42] Yeah. So we were, you know, in our discussions in regards to the clients that we see, we were finding a lot of the same sort of issues were coming up with families, they were sharing a lot of the same struggles around play and other kind of daily living skills, particularly with the really young kids. So, Simmy and I thought it might be a good idea to bring those families together so that they could share their experiences with each other, but then also have the support of ua as occupational therapists who can kind of facilitate that discussion, but really provide the chance for the families to share their experiences and share strategies. So the way that the group works is that we do a little bit of talking at the beginning, we talk about, you know, sensory processing. We talk about play. We talk about other kind of daily living skills. And then the group really opens up, and that's where we allow families to ask questions of each other. You know, we we often turn it back to the group, have families share, and that's where you really see that connection. So when a family hears something from another family that they've tried that's worked, then you see that there's really that that light bulb goes off for some of our families and they're much more willing to go home and try some of the things when they've talked about it with other families. But also just to know that, okay, I'm not the only one that's experiencing this. You hear it from somebody else, and then again, that helps to kind of build trust in that conversation and more willingness, I think, to be able to go home and more confidence, I think, to go home and try out some of the strategies.

Simmy [00:07:12] Yeah, just to piggyback off what Megan was saying is that what we've found we've been running these groups for about a little bit over a year now, and the groups have just been so successful in parents connecting with one another, sharing their strategies, but then even connecting and sort of setting up play dates, which is a strategy we recommend, especially for children with ASD, because we really want to build those almost social skills, and even if it's just parallel play, which we might get until later, that's OK. And we really want it to be parent supervised - child led. And we think that's really an important, you know, an area, and a lot of parents are maybe new to the country and they don't have a lot of family around or they don't really have, the child doesn't have a lot of friends, so sometimes just connecting with another family who may also be going through the same situation we found really, really beneficial, and then they can just be sort of make the introduction, have the discussion, and then we sort of, you know, leave it. And it's just, it's just nice to see those connections build at the end. So we actually have a group coming up on Monday that we were just preparing for. So we're really loving a different way of doing our job. And then again, just the last thing to add is that, you know, we are the professionals, we give these strategies, but we always say the parents are the true experts on their child. You're with the child 24 hours a day, maybe now. And so, you know, whatever works for your child, even though we give these suggestions, it may not work for your child. So you will know what works best. And our biggest goal is just have fun.

Shawn [00:08:45] So what can parents expect to see as play typically develops in children? Are there developmental milestones of play or different stages of play depending on a child's age?

Megan [00:08:57] Yeah. So when we're looking at typical play development, children will sort of naturally progress through different stages, so early on in play it is sort of expected that kids will just play on their own and do lots of learning with the toys themselves. And then as they start to develop other skills, they might move to more what we call parallel play. So then they're playing beside another child.  So, again, maybe not interacting so much, but they're playing within the same area. And then again, as they develop more and more skills, they will do more like imaginative play, more pretend play, there's more co-operative play, there's more interaction with another child, more turn taking. And we see that as a child moves through the different stages of play development.

Shawn [00:09:43] Can you talk a little about the kinds of activities kids with ASD might display within their play?

Simmy [00:09:51] Well, that's where we're just assuming that they actually know how to play with a toy, because typically what we find with children with ASD, oftentimes, what we've observed in their play is that they just like hearing the sound of it. So they just bang the toys together, or they like dumping the toys, and we think, oh, that's cute. They don't understand necessarily how to play with toys. But what we, what I found with the children I typically work with, they really seem to enjoy the cause and effect type toys. And what that means is when you you know, you press a button, something pops up, for example, like a Pop-Up Toy or a Jack in the Box. They seem to enjoy just having that repetitive play over and over and over with cause and effect toys. They also seem to really enjoy sensory motor type play where they're playing with squishy slime or things like that, play doh, bubbles. So that works on their visual attention skills. I don't know, Meg, do you have other examples?

Megan [00:10:50] I think also we might see in children with ASD, again, like that repetitive play, but it might not even be with a toy. It might be something that might be, you wouldn't expect a child to necessarily be playing with, so it might be opening and closing the cupboard door or, you know, getting kind of stuck in some repetitive movement that may not, you might not see it with another child.

Shawn [00:11:11] And that's exactly what my next question was, because oftentimes we see kids, they come in and their play can look very repetitive, like the opening or closing a door or even like blinds putting blinds up and down. What can you do to redirect a child onto something different when it comes to play?

Megan [00:11:32] So we try to coach families on how to enter their child's play. So if that's what their child is doing, trying to encourage families to see that as play and try to get into their world a little bit that way. So I might be joining them if they're down on the floor repetitively, you know, moving a toy back and forth, a train back and forth, we'd encourage the family to get right down low on the ground with them, maybe you start by commenting on what they're doing - trains going fast, things like that. Really simple verbal language around it. Maybe then encouraging the family to take another train and kind of copy the child's movement. Right. And try to bring some attention to them. You know, making, Simmy always says making exaggerated sounds. Trying to bring the attention to you that there's another person there that's that's trying to play with you as well. Yeah. But building on what the child is already doing. Yeah. Right.

Shawn [00:12:37] And what kind of suggestions would you give to parents if play doesn't come easy to them? Some parents think that it's hard work, it feels like more like a chore to play with their kids. Do you have any ideas or suggestions for these parents?

Simmy [00:12:53] Yeah, that's a really good question. So I just think the one thing that we really want to get across is that play doesn't have to be with a toy. And so I think a lot of parents get stuck because a) you know, they might say, well, we don't have a lot of toys at home, and what we want to encourage is that play can be part of your everyday activity, interaction, your part of your routine, part of everything you're just doing anyways with your child, even if it's just sitting with them and playing, singing a song and playing a game or getting them dressed, you can make you know, Megan and I always give this example in our in our playgroup, you know, putting their top over their head, you can go peek-a-boo and making that that's play.

Megan [00:13:31] I think just thinking about playing a little bit of a different way. So it doesn't always mean like you have to sit down and you're spending a big chunk of time focused on play. I think it's building in those, like just little playful interactions throughout the day and those can all add up. And then I think that feels a little less daunting than, OK, I have to schedule in my play from four to five when you're already thinking about all these other things as a parent that you're trying to get done. So I think it's more just shifting how we think about play and how it can be built into little spurts all throughout the day.

Simmy [00:14:03] And yeah, and also recognizing that the parents own comfort zone with play and what their values are around play. So we don't want this to be pressure or something that they feel like they have to be good at. Like I said, play is just supposed to have fun, your supposed to follow your child's lead and make anything into a playful interaction, to work on the social communication skills, to work on the fun skills, to work on the motor skills, to work on the thinking skills.

Dr. Heidi [00:14:31] OK. And so it also sounds like you don't need a whole bunch of fancy toys to be able to do that.

Megan [00:14:37] No, we often hear from families that, you know, they go out and they buy all these toys and then their kids don't play with them. Right. Right. So, yeah, we we often try to encourage families to just think about what you have already on hand and what your child is interested in. Right. So just observe your child, see the type of things that they're interested in and then go from there. We certainly don't need to go out and buy all the fancy toys because there's a good chance that they may not be interested in them.

Dr. Heidi [00:15:02] It makes you think about those stories too where they take the toys out of the box and then the box becomes the toy, and the thing that's most interesting.

Megan [00:15:10] Yeah exactly.

Dr. Heidi [00:15:12] So Simmy and Megan, do you observe any cultural differences in play? And does that affect your approach to working with parents?

Simmy [00:15:21] Yeah, so particularly when I worked in the satellite clinic, I worked with a lot of families who were new to the country, had not even heard of half of the toys that I was recommending. So I had to change my approach, and how like my expectations of even expecting them to understand how, for them to understand how to play with the toy, then expecting them to play it with their child. And maybe it doesn't meet their cultural values either, so, you know, I would have to, I would start by just asking what sort of, what does play look like in your home? And do you have any toys? I didn't want to put that pressure on them in case they didn't have toys. I don't know what their financial status was as well. So just, you know. And you know what I found some of the cultural expectations is that a lot of families would say to me, well, I don't play with my child. You know, I just give them, you know, either an iPad or put some toys out or let them watch TV, and that's play. Right. So then I'd have to do a little bit of education on that is a form of play, but the kind of play that we'd like to encourage is, again, even if it's some of that parallel or reciprocal, the cooperative play trying to explain how to get, like Megan said, getting down on on the floor with them and doing if they're interested in wheeling the car back and forth, you know, you sort of say, ready, set, go. And you want that anticipation and getting building that into play. And it's something that if that's what they're interested in, that's your play. I will say that I do change my, the way I explain play to parents who, if English is not their first language or if culturally that's not important to them, I've explained things depending on where they're from, like when I explain wheelbarrow, I can't expect everyone to understand what that means, so I will give an example. I used to say to this one family in particular, they just happen to be from India. I say, well, you know how you hold a rickshaw because they all understand rickshaws in India. That's how you hold your child's feet and they walk on their hands, and they started laughing and they just said oh. But they understood the concept. So I changed my language. And sometimes I just get down and show them and they'd laugh. But then explain what it's working on in terms of, you know, posture and motor, you know, their gross motor movements, and strengthening and things like that.

Megan [00:17:54] I think it's important to be aware of, you know, the culture values around play, but also just the the families, their own background, their own upbringing, they may have not had, that may not have been something that their parents did with them. So they may not see that as important. So, again, it's a lot of education about why we play and trying to help understand that, but recognizing that not everyone is comfortable with that, so working within the family, each family is kind of unique situation and values around play.

Dr. Heidi [00:18:25] So that's so interesting what you were talking about in terms of the cultural differences, not just in parents playing with their kids, but how they might be viewing childhood in general is potentially a time where they're spending time with them and being actively engaging as play participants, or in some cultures they might be thinking of childhood more as a time when kids are kind of doing their own thing and being more independent. And what I like about what you said Simmy is that you're giving this kind of holistic point of view around play. So it's not just about having fun, but it's linking these other skills around like communication and social interaction and the gross and fine motor skill development as well. So it's really kind of showing parents how significant play is in terms of their development.

Simmy [00:19:14] Yeah, yeah, exactly. And I and I also think that, like with some families, what some of the comments have been was that their mother will play with them. And what I want to get across is that, but you can as as their father, also play with them, and it's not really, it's not role specific. Play is fun. But you're working on if you know, the common goal is to have fun, but to work on all these like like all other skills, like motor and sensory and thinking and cognitive, and that, you know, even whatever way even throwing a ball back and forth, something like that, if a lot of dads feel that's more comfortable for them, that's fine, too. But we just teach a different way, so maybe waiting and let your child anticipate and request back before just throwing it back and forth because you're we're just teaching them how to play a little bit differently. And so that they're still part of the process.

Dr. Heidi [00:20:12] Yeah. Even just being flexible. I did an assessment the other day with a little two year old who made a game out of putting his dad's flip flops on his feet and alternating them back and forth between his own feet and dad's feet, and it was hilarious.

Simmy [00:20:27] Yeah.

Dr. Heidi [00:20:29] Yeah.

Simmy [00:20:28] Exactly.

Dr. Heidi [00:20:30] So to help parents really think concretely about developing their child's play, can you give us a sense about what kind of environment to create? So what could a good play space look like?

Megan [00:20:44] That's a good question and we do talk about this, too, with the families that we work with. And we hear lots of questions around this, like how many toys should I have and what should the space look like? And we often say, like, try not to overwhelm with too many toys, right. Because when there are too many toys, then what we see happening is that the child might just move really quickly amongst all the toys, like going back and forth, and not really ever kind of sitting and playing with one toy in particular. So we talk a lot about, you know, maybe organizing the toys in certain way, so maybe putting them in bins, labeling the bands, have pictures on the bands so the kids can easily see what's inside. But what that does is it creates an opportunity for the child to maybe, like request the toy or they have to point to it or they might have to bring the bin to the parent if they can't open it up on their own. So it creates opportunities for interaction. And then also we talk about, you know, again, not having too many toys all out at once. So you might just have a couple of bins, hide the rest for now, work on building skills with the toys that are available, and then you can rotate them around so that, you know, it does create some more interest and keeps kids from getting bored with the toys.

Dr. Heidi [00:21:54] It makes me think of my office when I have too many things out, I'm like, what should I do?

Megan [00:22:00] Yeah - it's the same for kids, right. When there's too much in the environment, a lot of the kids that we see, too, you know, do have difficulties with attention or they can easily become from a sensory perspective, might become overwhelmed with a lot of visual interplay, right. So that can be really distracting. So what we find when there is, you know, a safe, comfortable space with not too much going on it actually creates a nice positive environment for building a play skills.

Simmy [00:22:24] Yeah. And the other thing. It depends on your living environment. So if, you know, if you live in a condo or apartment, then you know, your living room can be your play space, your bedroom, you don't have to have a specific play area, with some families that do live in houses that if they have a basement we've made suggestions on how to create a sensory space at home with, you know, maybe having a tunnel or a tent or a ball that they can bounce on or a mini trampoline. But it's not necessary. It's only if it, it depends if they're working on the sensory skill, if that's, if your child is a sensory seeker like we talked about earlier, then that's sort of a good way that you can incorporate play if you have the space.

Dr. Heidi [00:23:09] Yeah,.

Simmy [00:23:10] And we make it very tailored for the child's interests and what their abilities.

Megan [00:23:17] Yeah, again, based on their sensory needs.

Simmy [00:23:19] Yes.

Megan [00:23:19] Yeah.

Dr. Heidi [00:23:20] Yeah. So this next question, that might be hard to answer this next one then, we've talked about you don't need a whole bunch of toys per say, but are there some good basic toys to have at home, depending on kids developmental levels, like what would you advise for a kind of like infancy-toddler hood and then the preschool age and then the school age?

Simmy [00:23:43] Yeah, so I Iike to break it up into more the skills right, from an OT perspective. So like, if I were to talk about fine motor skills, I would say things like Lego. You know other fine motor toys are there?

Megan [00:23:59] Like if they're younger, like bigger blocks. Anything that they work on, like stacking, building and like a lot of those construction type skills.

Simmy [00:24:07] Yeah.

Megan [00:24:07] Toys are good things where they can have to use two hands together. So things that you push together, pull apart any toys like that. So we love to go for...

Simmy [00:24:16] Velcro Fruits.

Megan [00:24:17] Are good for that...

Simmy [00:24:19] The beading, the pop tubes. And then for things like sensory motor play, like sandboxes,.

Megan [00:24:26] Water play.

Simmy [00:24:26] The water play. Oh, slime, bubbles, and then the cause and effect are like the Pop-Up toys. I think that's it for cause and effect. Yeah. So we just, yeah we look at ages but we also look at which goals they're working on. And then imaginative play, like let's pretend to play doctor or Tea Party or things like that. And we always say the Dollar Store can be your best friend. You don't have to go to Mastermind or Scholar's Choice or you can go to Wal-Mart,  Dollar stores, there's a lot of toys that you can buy that are inexpensive, that also meet all these goals.

Dr. Heidi [00:25:07] Yeah, yeah. That's good to know. I don't think we can fully talk about play without mentioning children's use of electronics. What do you think parents need to consider when they're trying to balance out use of tablets, phones and videogames with other kinds of play?

Megan [00:25:26] I think it's exactly what you said it's a balance, right. So finding what works for your family and your child is one thing, right? So, you know, knowing that there is a time and a place, probably in each household, you know, when there might be appropriate time for tablets and things like that. But I think also just knowing that that's good for some skills, but then we also, other types of play help develop all the other areas of development as well. Right. So just trying to figure out that balance what works best for each family and child. So I think it's a combination of, you know, the tablet time, but then also thinking about the other areas and trying to incorporate time for that as well.

Dr. Heidi [00:26:07] Sometimes I even just highlight with parents, too, like you mentioned, like the different types of skills and helping parents to identify what those skills are. Right. So when you're using, like a tablet and those electronics, it's very predictable, right? It is, in a sense, almost cause and effect at times. Right. You press something and then it can be a very predictable response. Whereas when you're dealing with other people, people are very unpredictable. And so the social skills and the problem-solving and the negotiating and perspective taking becomes more important.

Megan [00:26:41] Exactly. And even just movement. Right. Like, so many of our kids need a lot of movement. And you don't get that as much when you're sitting still with a tablet. Right. So thinking about that, too, and what all those gross motor, all that sensory motor, what does that do for a child's development, their body awareness and all their other skills that develop from there as well, so, again, just as you mentioned, just thinking about all the other ways that we can play and why why that's important too.

Simmy [00:27:10] Yeah. And part of our role is also just to educate parents around different types of play. We don't want to say that a tablet is bad and we wouldn't. But just trying to have them become comfortable with other play that they can try to engage their child in, because, you know, like Megan said, the goal is to also encourage like, when they're just looking at a tablet, not much is happening in the in the brain. So we want that sort of reciprocal back or some kind of, you know, excitement about something that you're in joint attention like I say that you can get out of playing with a toy or not a toy, even just a game in general. You know, we don't want to just limit it to toys. And I really, but again, I we're not here to judge and, you know, parents have to make that decision on their own. I just try to encourage being the comfort around play and why it's important and what skills develop out of having that interaction. And it can be, and again, I agree with Megan you limit you can limit the screen time.

Dr. Heidi [00:28:21] And there's also some really great recommendations from the Canadian Pediatric Society around that, too. So if parents go to that Web site, they can find that listing.

Simmy [00:28:30] Yeah.

Dr. Heidi [00:28:31] Yeah. With young children, with ASD, many parents are concerned about enrolling them in structured activities like soccer or dance. I work with a lot of parents who they've tried to do those types of activities and they maybe haven't gone so well. Kids attention levels are low or they're more focused on their own agenda rather than what they're being asked to do. What are your thoughts about that? Can it be good to have a mix of structured versus unstructured activities?

Megan [00:29:03] Yeah, I definitely think so, and I understand the different reasons why it could be more challenging for a child with ASD to participate in and some of the typical recreation programs. But there is some value in that. We look at, you know, what types of recreational activities might be a little bit better suited for kids with ASD based on like potentially any motor planning issues, attentional issues, so we look at more individual type activities, but still within the social context. Right. So things like gymnastics, karate, martial arts, swimming. So that allows the child to kind of work at their own pace, develop their skills at their own pace. But they're still within the context of a social situation. So they still create opportunity for some of those social interactions. So we look at that and then there are, I think there are some programs out there where the instructors are better trained and have more knowledge around different diagnoses, ASD and things like that. So looking for, we have some common ones that we will recommend to families around that, that might have a better understanding of how to work or how to teach a child with ASD to better support their development.

Simmy [00:30:15] Yeah, just like those three activities we usually recommend gymnastics, karate, depending on their age, and swimming, because they work in all planes of movement, you know, vertical, horizontal, diagonal. So they're moving their body. And, you know, I often say to parents, parents will say to me, sometimes they're just they don't even participate, they don't understand what's going on. They're walking off. And I said, I can understand that they don't want to waste their money or time, and I completely understand. But I've tried to encourage what they are getting from it, even sometimes just watching and, you know, trying to be interested in another another child, that's sort of the goal. So I'm trying to put a little bit more positive spin on why they're doing it and why it's important. And again, it's only if it fits into their schedule or their, you know, their values and their financial situation and their timing. But you can even do like home yoga. You can do so many things at home. It doesn't have to be in a structured, but I agree with with Heidi what you're saying, a balance of structured and unstructured, depending on your child's interests.

Dr. Heidi [00:31:17] Yeah. Yeah. And I like how you highlighted Megan to the idea of like potentially like talking with instructors ahead of time as well, because, like, that preparation could make a world of difference. So even just thinking about an instructor who like, like every kid in a line has to do something and then you're left waiting for a long time vs. like having kids remaining active and engaged. Right. So there's not a lot of downtime when things might go off the rails.

Megan [00:31:46] And that might be something, too, that families could look into before they actually, you know, fully register and pay the money, you know, contacting the organization. Is it possible to come and do a trial? You know, these are my child's strengths. This is where they might have trouble. This is what works in terms of helping them understand instructions, things like that. So letting the instructors know kind of what to expect, maybe giving them some strategies, but then also preparing the child, too, ahead of time. OK, so we're going to go to this new program, you know, and helping prepare them and giving them the tools so they can be more prepared in terms of what to expect can go a long way to to making it more enjoyable for everyone.

Shawn [00:32:25] So some play might also be considered sensory seeking behavior. How would you describe what sensory seeking behavior is and what can kids get out of play sensory wise?

Megan [00:32:37] Right. So in terms of sensory seeking behavior, I think we have to understand a little bit about sensory processing and what that means is that so we have our different senses, so how we respond to sound, how we respond to touch, how we respond to do visual input. So we have all of our different senses and there are times where our sensory system needs more of a certain type of input. So for some of our children with ASD, we see in terms of the visual or in terms of touch, their sensory system kind of seeks or craves more of that. So we might see them engaging in a lot of play where they're trying to fulfill that need from a sensory perspective. So that might be a lot of they're looking at things visually. So things spinning, looking up really closely at the wheels of toys, cars and things like that, spinning because, again, their sensory system needs more so the child's actively trying to find ways to get that. So I think that's what you referring to in terms of sensory seeking behavior in play. But also just sensory play is an important part of play, and that can provide a lot of benefit to a child's overall development. So sensory play might be playing, you know, tactile kind of sensory play, that's what a lot of people think about, so playing with sand and water and things like that. But it also involves like our whole body movements. A lot of our kids with ASD, like a lot of movement, they need a lot of movement. So a lot of like the swinging, going upside down, jumping off things, because, again, they're trying to kind of fulfill that sensory need. And then on the other hand, we have kids who are, you know, more adverse, so like avoid sensory input. So they might avoid certain play activities where maybe it's too loud, certain toys that are too loud, or certain and play environments that are too loud. So you might actually see those kids kind of shying away from some of those play activities. And it could be because their sensory system is overwhelmed by that input.

Simmy [00:34:34] Yeah, and also, like when you when you think of think about the playground and things like that, you just have to, some kids might have some gravitational insecurity. So when they're on a swing, they they might start screaming. But, you know, it's just boom, their feet leave the ground, so their body's in a different position. So just keeping aware of that or they might be afraid going up a side or going down a slide or they're the opposite. They're just they have poor safety awareness, they just climb everything because they're just their bodies seeking it. They need it. But yeah, like Megan said, like the all the the touch type sensory seeking, the visual, the movement we see the most, I would say. So all the ones that Megan mentioned plus maybe bouncing on a ball or dancing, jumping, spinning around, you know, in circles, if you play hokey pokey, you know, head and shoulders, anything with music and movement is a really good way of meeting that need.

Shawn [00:35:29] OK, is there anything else you wanted to say to parents who are currently on the waitlist for an ASD assessment? Is there anything that they can start doing now at home to help with their child's play?

Megan [00:35:40] Yeah, I think it's important just to think about you know play looks different in every family's home. So work within, you know, what the parent themselves is comfortable with, where the child's at in terms of their play skills. And again, just really focusing on, you know, your child's skills and their interests and then following your child's interests. Because we do these workshops, we hear from families all the time play looks very different in everyone's homes. I think it just a matter of focusing on your current environment, your child's skills, your comfort level and working with that.

Simmy [00:36:11] Yeah, yeah. Yeah. And I would just say a couple of take home messages again are just remember, try to really, you know, get face to face with your child. Finding, like it doesn't again have to be remember toys don't have to be objects, they can be your everyday routine. And I'd say the last biggest thing is just have fun. Play should be fun. It shouldn't be a chore. You shouldn't feel pressure around it. It should be fun. And anything you're doing in your day to day routine, you can make into a game.

Shawn [00:36:41] That's great. Thank you so much for joining us, Simmy and Megan. We learned a lot about play today. And thank you for coming on.

Megan [00:36:49] Thanks for having us.

Simmy [00:36:50] Thank you so much for having us.

Dr. Heidi [00:36:53] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to email us at ASDengage@hollandbloorview.ca.


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About the podcast

ASD Engage is made possible by donors, through Holland Bloorview’s No Boundaries Fund. The No Boundaries Fund allows teams at Holland Bloorview to apply for funding in order to respond the emerging needs of clients, families, and frontline staff.