Dr. Penner THINCs big when it comes to integrated care

Dr. Melanie Penner is a senior clinician scientist and developmental pediatrician at the Bloorview Research Institute (BRI). This fall she was awarded Transforming Health with Integrated Care (THINC) from the Canadian Institutes of Health Research (CIHR). Dr. Penner’s Project ECHO Ontario Autism is an evidence-based intervention for community providers to greatly enhance their autism care.

What are you hoping to accomplish with the THINC grant?

The most exciting to me is the network ECHO autism programs across Canada. This structure allows us to connect and work together, to measure outcomes and to learn from each other.  

Through the grant established network we now have a shared evaluation strategy that gives a common language to know if we're doing the things that we hope we are through the ECHO Autism program in Canada.

We still need to generate more evidence about knowing that we are moving the needle in community based care for autistic children and youth in Canada -- that's locally in our own program, but also at a national level. We know that so many kids are never going to enter the walls of Holland Bloorview or the other places involved with this work, and I feel strongly that they deserve the same level of care.

What does integrated care for kids with autism look like to you?

The core nucleus is we have to see and know kids for who they are. Unless we tune in with who that kid is, what their desires are, what their identity is, what their hopes are, what they find hilarious, what they like to do, we're will not succeed in providing care that is able to center them.

And then we need to do the same thing with families. We need to meet families where they're at. We need to validate their frustrations and their concerns and their fears, and we need to celebrate the amazing things that they do.

Then we need to take all of the players who are in the orbit around that child and family and we need to make sure everyone is speaking that same language about knowing, respecting, adoring these children and families -- and doing it in a way that doesn't require superhuman efforts on the part of the families.

It means everyone has to be talking to each other. [Integrated care] means we need to be aware of what resources are out there. And it means that someone who's working as a community doctor needs a way to run things past an expert like me in an accessible way. That's part of what we try to build through ECHO so hopefully the child and family can stay in their community instead of traveling really far for care.

How can community health care providers better support kids with autism?

This will be the first phase of the work that we're doing through this grant. Listening [to communities] about what tools we can design to help support the care that they provide in the community. It’s that same attitude that that I take toward the kids that that I work with and their families and putting that toward the community care providers who are working with them. These are folks who are working so hard to do right by families and choose to do it because they care.

And community providers can work to understand how all kinds of people can find their joy, and to enable their access to their joy. To share their joy with them. I mean, I think these are just kind of the basics of humanity.

What are some misconceptions about autism that you want to set straight?

Sometimes we might see autistic people do things that look different or that don't make sense to me as a neuro-typical person. When we listen to autistic people about what what's happening in those moments, it’s how they're coping. Sometimes it's a way to get their energy out. Sometimes it's because they're excited, sometimes it's because they're anxious.

What's important is that even though it might look different, it is almost always not a matter of safety and there's a real reason for that person to be doing that thing. And so I think we need some more kind of understanding around some of these some of these visible things that we might see.

Autism is also sometimes an invisible disability, and so there might be challenges that people have with some of the social norms that exist. Some of the work as well is to confront those things. Interrogate why things are the way they are? Because there are barriers that sometimes we can't necessarily see. So really be quite thoughtful about examining unspoken social norms.

We still have a lot of work to do in terms of making the world a more accepting place for autistic people. But I think we're on the road. 

What do you love about working at Holland Bloorview?

It is a beautiful thing to be in a space where inclusion is so much the so much in the ethos of what we do. I also have the most amazing research team and colleagues in the Autism Research Center. We talk about finding the joy on a really regular basis to ensure that we're also finding the passion in what we do and the levity as well.

I think one of the coolest things that we do through ECHO is bring community based clinicians, so doctors or psychologists, into contact with family leaders and autistic advocates. They get to hear their thoughts on the care that they provide and how cool is that?

All of this really allows us to ground our recommendations around care in lived experiences. There was a really powerful anecdote once where one of our autistic advocates talked about what it was like for her to read her old medical chart. And its things like that, those opportunities that are a really powerful part of what we're doing that and how it’s having a really big impact for kids.