Published 2.18.18 by Samantha Craft
Thank you for being here today, Jason. We look forward to learning more about you and your works in the community. Like many of Spectrum Suite’s readership, you are on the autism spectrum yourself. Would you tell us a bit about when you received your diagnosis and what that process was like? Was there a reason you sought out a diagnosis?
I always knew I had learning disabilities, since I was young, but they (professionals) didn’t really specify . . . I was looking at a border school and they said I fit the profile for a person on the autism spectrum. I had dysgraphia, ADHD, problems with math, just never formally diagnosed. I don’t remember when I officially got diagnosed . . . I was probably in my late-teens.
Do you believe that knowing you are on the autism spectrum has affected your sense of identity or granted you any self-knowledge or insights?
That’s an interesting question. Part of it is just because you know you are autistic doesn’t mean I was necessarily happy or confident. There is still the part of trying to fix myself and trying to be different. It was a process of thinking I had to be fixed. And then studying about disability culture and realizing it (autism) was a part of neurodiversity.
Do you have any other family members on the spectrum?
None that have been formally diagnosed or identify with that, but it’s probably possible. My parents are a lot of older. The way that diagnosis has advanced, I can see where other people can see that.
How do you choose to self-identify as an adult on the spectrum, e.g., autistic, person with autism. How do you feel about other individual’s right to self-identify as they feel is best for them?
I do tend to go with ‘on the spectrum,’ sometimes ‘autistic person,’ sometimes ‘person with autism.’ I lean toward autistic person because of debate going on. The right to self-identify is really important. But recognizing the pros and cons is important, as well as seeing how you identify with both of those and the history. It’s a culture and we transition with it. Both person-first and disability-first have their own background. They can both be empowering in their own way, if people understand what the reason is behind it, and if they choose how to identify within the disability themselves. Not judging people for their sense of self-identity is important. Both have ways of being empowering.
Do you consider Aspergers a disorder? Why or why not?
It’s a condition, a lifestyle. I learned there are a lot of positive things I bring, just like other people on the autism spectrum. But there are things everyone struggles with. There is a better way to put it than ‘disorder.’ Saying it is a disorder goes into ‘those poor people with a disability,’ and the misfortunate misnomer that disability is always negative. It also takes away disability being a culture. Society has a role to play.
Disorder puts it on the individual. It assumes anyone that has different assumptions needs to be retrofitted to fit in society. We need to consider how society can be retrofitted to include everyone.
What would you say is the most rewarding thing about being you? What has been your hardest challenge to date?
There are a lot of great things about being me. I have my own way of viewing things. I find it interesting to think about what I think and take into account into what others are thinking. People sometimes only think of the negative. I enjoy the way I think and process information; it’s something I really enjoy about myself.
Is there any one book, resource, or person who has significantly helped you to understand Aspergers?
I don’t know if it’s one person or resource. I am not a big reader. I am a visual learning. I’d say talking to people, mentors, and general information. I have appreciation for John Robison and Dr. Temple Grandin and other great authors, but I learned in my own way. Reading articles and taking disability studies has helped me understand the cultural aspect of disabilities. I think the idea of disability is culturally understood. It’s culturally indicated. It is determined by society more than the actual disability itself. It becomes more about why do we socially construct environments this way. Take it off the individual and put into a cultural perspective.
You are the founder and spokesperson for the successful, online, support community Jason’s Connection, founded in 2013, a nationwide hub that connects people in every U.S. state. What are the specific resources Jason’s Connection provides?
We try to offer a lot of different things. One of the reasons we provide these services is because sometimes the models of services can be very fixated and help only those that fit into those models. We want to address what people are going through, those with disabilities, and not. We want to have different resources to meet people with what they want, instead of having people fit into a system. It’s not just cognitive behavior training; there are other ways to do things as well, such as a support network. We diversify to be more open. Why I have an autism diagnosis, a lot of support wasn’t made for me, and didn’t fit.
What motivated you to build Jason’s Connection?
Jason’s Connection started about 2012, when I took a disabilities study class. One of the things there was a resource list. It was so hard to find things or get services. Then it became about cultural understanding . . . Sometimes you have to fix yourself and do better, but disability is part of who you are.
What has been your fondest memory to date related to Jason’s Connection?
Interacting with all the people, whether speaking or through the website. I think we want people to start to think about these things. Not 100% right way or wrong way.
Increasing discussion about what disability means, being able to open up discussion and talk about things is really rewarding. To hear people are glad to be thinking through these things is good too.
Where would you recommend a new visitor to your site visit and explore first?
Depends on what they are looking for. We have a resource list and people to help find resources. Our Facebook page is good place to look. Everything we do is free—always going to be free. One thing that doesn’t always get talked about is the idea of social-economic status; and people don’t always have that for a number of reasons.
Where do you see the future of JC going?
Continue to keep going with discussion and move toward community building. Discussions about what is a valuable resource. It (JC) won’t be the only thing out there, but being part of the culture of what’s out there . . . Neurodiversity is becoming more important, but (we are) still trying to find out how to include neurodiverse voices. It’s going to continue to grow. A lot of people have a lot going for them . . . (JC will) continue to be part of wider movement, a disability rights movement.
Are there any specifications that make Jason’s Connection unique in comparison to other online resources?
We try to be open. We try to be more grassroots and understand there isn’t one finite thing. There is a lot of engagement from a lot of different people. It’s a place of disability first and foremost. Sometimes it’s preaching to the choir. I’d like us to be more considered in mainstream.
People with disabilities have different opinions than their parents, employers, and others… we all have diverse identities.
Is there an organization outside of Jason’s Connection that you have found exemplary in offering support to individuals with disabilities?
It depends. American Association with People with Disabilities, National Disabilities Rights Network (where I interned), Rooted in Rights, Independent Living Center. There are a lot of great things out there. Autistic Self-Advocacy Network and Autistic Women’s Network are two others. Autism Society in New England is another.
You recently had a summer internship through AAPD (American Association of People with Disabilities), at the National Disability Rights Network, where you contributed in advocating for public policy to protect the rights of people with disabilities. What would you say was the hardest aspect about that internship?
This summer was a really tough summer because of Medicaid concerns. We were really worried that Medicaid bills were going to pass. It was not the best for people with disabilities, even though not politically affiliated one way or the other . . . That was the hardest. These are people’s lives you are talking about. We would protest, do different phone calls, and compile what different agencies were doing so legislation could see what was going on. We were in a big support role. I was an intern doing what needed to be done at ground level.
You must have learned a lot.
Yes. As tough as it was, I wouldn’t take it back. It was what I believed in and what I thought was right.
Would you say that was also the most rewarding part?
Yes, that was one of the rewarding parts, learning a lot about self and others. You can’t be by yourself in that process.
You will soon be graduating with a M.S. in ‘Cultural Foundations of Education (Disability Studies) with a certification of advanced studies. Congratulations! That sounds like a fascinating area of subject. What significant learnings are you taking away from your educational experience that you haven’t already mentioned?
A lot of the learning is in the classroom and outside the classroom. They have a disability culture center, my mentor self-identifies as neurodivergent . . . I’ve taken classes in my program and outside. Understanding universal design . . . is a good way of teaching and educating. We are all educators
It is interesting you brought up Universal Design, because I’ve been researching workplace diversity and inclusion (D&I). I’ve done some studies on Universal Design and what you are saying carries over into workplace as well. Do you have any insights about universal design in the workplace?
A lot of universal design hasn’t looked at cultural competence, persons from different countries or the neurodiverse community. A company’s understanding of cultural competence is important.
What are your plans after graduation?
I will continue with Jason’s Connection. I can do that and do other things. I will look for a job like a disability educator and hope to teach people that aren’t disabled what it means to be culturally competent. It’s important the people understand what their rights are, what to ask to meet culturally competency. It’s important to know what you can do . . . What it’s like to be an autistic person . . . The saying ‘nothing about us without us’ is a big part of the community movement.
When you aren’t studying, or contributing to Jason’s Connection, what might we find you doing?
I try to get out. I hike. I like comedy and shows. I don’t know much about music. I don’t like completely overbearing sounds. I watch a lot of documentaries and do things with friends. It’s important to diversify what you are doing. I like to travel and meet different people. I try to make sure I have eight hours of sleep.
Your bio reads: ‘Our differences illuminate our common humanity.’ Will you please elaborate on what this means to you?
A lot of times, when we think about people, we think about what’s similar to us that makes us great. It’s also about differences. If we were all the same, I don’t know how we would progress as people . . . Being different in some ways is good.
What would you say to a newly diagnosed person on the spectrum to offer support?
. . . Realize part of being autistic is that some people want to fix a part of who you are as a person, a part that definitely doesn’t need fixing.
It’s hard to do something when you are working against yourself. There might be a lot of experts telling you how to do things, but you really have to trust yourself. Some people added to my anxiety by what they said or did. They didn’t make sense to me. It’s important to know what is working and what isn’t working. Just because they say, “This is the way you have to do it,” doesn’t mean you have to do it that way . . . It’s about what you need to be part of society. Understand and accept yourself. It’s important to talk to other autistic people. They might have ideas you never thought about.
I’ve really enjoyed this conversation today, Jason. You’ve had some great insights. Thank you again for your time and thank you for all you are doing in the community to support those with differences. Where can we learn more about you and your works?
I am always willing to talk. Willing to host people, if anyone wants to get involved or wants me to get involved.
Is there anything you’d like to add before we close today?
Thank you so much. It’s been really great. If there is anything, you’d like us to do, let us know. I am amazed at what your doing. We’d be glad to help!
Thank you Jason. We greatly appreciate your time with us today. Let’s definitely keep in touch.
You can find Jason at Jason’s Connection.
