Ryan Roy is an Autism advocate from Saddle Brook, New Jersey. He has advocated for various lobbying and organizing efforts at the local, county and state levels to improve policies and conditions for people with disabilities. In 2017, he served as Grand Marshal of the New Jersey Disability Pride Parade.
Lets start with your background. What is your experience in the worlds of autism and adult autism?
I believe that being in this experience is truly fascinating. Knowing how you’re supposed to advocate - not only for people with disabilities broadly, but people who are diagnosed within the autism spectrum disorder. I think its really important. What it entails based on their disability, what their struggles are, knowing that they can live their lies independently, instead of being excluded from the community.
I know the state is trying to close down group homes and institutions to make sure that people within the autism spectrum disorder and other development disabilities have opportunities within the community. And this helps a lot. Knowing how to behave appropriately, knowing how to function well. It takes those things to improve behaviors, and knowing how to focus on a healthy lifestyle.
Making good decisions, going on the right path. And also when it comes to being in a relationship as well, and even having children. It’s a lot of responsibility. And even securing status of employment. They need to be competitive to make sure they get the experience and skills to make sure that they’re prepared, and know how to use it.
I want to expand on something you mentioned that ties a lot of other topics together, which is advocacy. There are programs that you become familiar with through advocating for yourself, which is something that people with autism and their families often do without realizing it.
Talk about what it means to be an advocate, and some things that people with autism and their families should know about when they participate in advocacy?
Advocacy is a skill, that you should learn to speak up for yourself. It starts at an early age, right before you enter adulthood, around the teenage years. And it continues when you get older, because its really important. When I was younger, and I was partaking in an IEP meeting, my mother taught me how to speak up and fight for my rights, and make sure that I get the services.
When you’re the person attending your IEP meeting, not the parents, not the school psychologist, not the case manager, not the educators, this is something the person has to be a part of. It’s important, it’s a necessity. Without that, none of this would take place.
Places like the Boggs Center on Developmental Disabilities have information on how you’re supposed to teach educators and professionals to handle people with disabilities, either their students or others how to work on their behaviors supports, creating a positive way to engage living in the community, how to speak up for themselves and represent themselves at the table. People have to get to know who you are, what your strengths and weaknesses are, and what your attributes are - these are things they need to know.
Learning how to speak up in front of legislators, meet and greet them, even testify in a budget hearing, let them know exactly what’s important to them. Because this is their lives. They need these things - like direct support professionals - and increasing wages so they get enough money to pay for them. Because they need that to live their lives and to achieve the quality and fullness of it. And to make sure that they’re satisfied and really are helped - and these are essential pieces in knowing how to be alive, and full of contentness.
Another topic you touched on, something that people who may not be connected with the world of adult autism probably don’t realize, is the difficulty of the 21 transition. There are so many implications of the transition, educationally, legally, socially, there’s really a lot to unpack - and at the post 21 club, that’s a big point of focus.
Talk more about your experiences with the transition - how you prepare for it, how you experienced it, and anything else you want to say
When I was about to 21, my parents were unsure what my life was going to be like. There’s securing employment, trying to do something for my life. It’s a little bit of a scary thing. And my mom has done so much research, and she learned so much about the Division of Developmental Disabilities, the annual personal budget, that your support coordinators and professionals within the agencies can look into service providers that really fit you. And this was something that did impact my life in a lot of ways.
And I know from the course I took at Eastwick College Hohokus School - they taught me how to operate a computer, even how to use smartphones - and I went to the adults with autism day program as well - and that helped me a lot in how to become an advocate. And if it wasn’t for that I went to Jersey City, at St. Joe’s school, where I learned how to get into a program called Partners in Policymaking - its helping people get to know a lot.
There’s a lot you have to know, and a lot to learn. You have to make sure that you have the best benefits, and you have to address it very appropriately and very cautiously.
(lightly edited and condensed for clarity)
(Part 2 can be found here)