Participatory Research

Hello, I've been asked to talk a little bit about my experience working on the CPAR project and that really focuses on allowing the individuals that you're doing research for to really be a part of the design of the research, the implementation, the write up of that research.

I found in our project with our autistic partners it's been an extraordinary experience for me as a seasoned researcher and someone who prided herself as being a patient and family-centered care practitioner.

I've learned so much from my autistic partners and how I should be thinking about research questions and what I'm interested in may not necessarily be what's important to them or what is of interest to them.

I've also learned from my autistic partners that the language that I use and how I communicate my message really makes a difference and so I've really changed how I teach my course in autism and how I write my syllabus and how I think about differences and strengths.

So, I continue to enjoy my experience working with autistic partners on research and I know I have a lot more to learn from them and I hope you will join me in similar research so that we're asking the right questions and answering the questions that our autistic partners really want to answer.

Thank you!

I am the parent of two boys with autism or two autistic boys.

One of the things that's been good or that I think is helpful and necessary is, you know, there have been some studies that my boys have, we've tried to participate in and have been unable to participate in due to the severity of their autism, of their symptoms.

We would have had to look at, you know, could there be modifications, how could we modify this, so it wouldn't be as intimidating. And, and, we probably would have needed to build in more time.

Individuals who are as significantly affected by autism as my sons, tend to get excluded from a lot of studies because they're just, they're not as easy to study. And that, that, with a little bit of collaboration and preparation, can be overcome.

For me, being involved in this, you know, important research, is actually understanding the individual needs of the person that's priority number one.

In my, you know, my work, because their access needs, is their… It's essential to their daily lives. And with that in mind, is how they interact with others, and also is how they communicate with others too, as well, but also it's how they learn.

And for me, as an individual of color that has autism, uh, I see this in a very, you know, perspective view of why I join. I join because it's an opportunity to rewrite the mistakes that have been plaguing us for forever, no offense. But I want to make sure that the information we give you, the resource we give you, the technology, the advancement, etc., that we give you, that it works for you and you alone, nobody else.

That individual kindness, compassion and you know, respectful of one another. And that's how we'll, you know, thrive together and we'll survive together.

Thank you.