Jason's View

Why Experiences Like Mine Show We Need More Than Autism Awareness

29 Apr 2020 by Jason Harris

My experiences and that of many others show why awareness is nowhere near enough. In the 90’s, when I was a Junior in high school, I was looking for new schools to attend. At that time, I already knew I had learning disabilities, which were recognized during second grade. From second to eighth grades, I went to a local school for students with learning disabilities where I was teased by a group of girls. Before that experience, I remember being pretty happy and okay with who I was. I sometimes to this day joke that I peaked in first grade. Before then I was outgoing and could be a bit loud and brash. This is probably part of the reason I got made fun of and also caused annoyance with teachers - who I was later told could not understand why I could be so smart yet have such struggles. Like many, I was diagnosed with unspecified learning disabilities. At that school and through those experiences with students and teachers I started to hate myself and felt that there was something wrong with me. I become more introverted and more depressed and even had moments of suicidal thinking. Ironically, if I was now a youth and tried to go to that school knowing I was Autistic, I would not be allowed to attend as they don’t accept Autistic people.

Following that experience, for my first two years of high school I decided to go to a Catholic school that was supposed to have good supports. However, I fell through the cracks in the system between their special ed classes, where supports were offered but were too easy for me, and the general classes which were more my pace but didn’t provide any supports. By then I had regressed to acting younger than I was.  I was also very small in stature for my age and appeared younger than my high school peers. I was made fun of pretty vigorously, and unlike the other school where even though I got made fun of I also had friends, in high school I had no friends really except for one. My hatred of myself and emotional outbursts accelerated.  As a result, by the end of my Sophomore year I decided that I wanted to go to high school elsewhere and thought perhaps I could fit in and make closer relationships at a boarding school away from home.  My decision also included academic and social supports that I thought I might receive 24/7 in a nurturing and academic environment that understood me. The school that was recommended was geared to Non-verbal Learning Disorder and Asperger students. The description felt like it fit me and made me feel perhaps this was a place I could be accepted. I felt like this place could be a home or safe place in the way that many people like myself could call our Autistic Community. 

Sadly, that was not the end of the story and that good feeling from that initial meeting waned as I became more familiar with the school.  It must be noted that schools for Non-verbal Learning Disorder and Asperger students were far and few between in the 1990’s and early 2000’s. There was still very little understanding of the needs and inner lives of NVLD students. It quickly became apparent that this was not an Autistic Community at all. It was a hierarchical programmatic setting. The school itself was, at least rumored from the students themselves, to be set up on an old institutional model.  Even if it weren’t true, in some ways it was set up as such. You had a dorm room and there was specific homework time, free time, and then bedtime when no screens were allowed. You were not allowed to use your computer or other devices, and if you were discovered using them, they would be taken away. You were basically controlled, especially during the weekdays. Your dorm room could only be locked from the outside and you could never really have privacy.

There was required physical activity a few times a week with one of those being a sports day where we had half-class day Wednesday and then a half day of sports. We also had a half day Saturday, and the rest of the weekend they would have outings you could sign up for, like going to the mall or shopping center and sometimes an outing that was something cooler. There were some really nice teachers and staff, but most of them were undertrained and others had some disdain for the students with autism. I remember one time - which has  still stuck with me all these years - that one of the teachers on a floor meeting was telling us how “people like you” are all bad at social skills. To me that explained why I had struggled so much with friends. The students were not always much better. At that school there became a hierarchy of normality. The kids who were more “normal”, who didn’t take meds and could interact in more normal, more typical social ways, lauded themselves over those of us who were deemed less normal. Alongside those occurrences we were learning about people with autism who were brilliant, like Temple Grandin and others. It gave the expectation that you had to be  brilliant to be seen past your autism. I was in a middle area where I wasn’t considered the least normal but also not normal enough, and my social interactions often were made fun of. Also, I knew that I was not brilliant or a savant, and in some ways I felt very inadequate because it seemed I couldn’t do well what others were doing and it appeared that they could interact and engage more easily. 

In summation, this environment, rather than allowing me to accept myself for strengths as well as learning to manage my differences in effective ways, made me even more aware of my autism as a negative.   I hated myself more and felt these experiences confirmed more than ever what I felt was wrong with me and I was more focused than ever on what I had to fix to be “normal”. I decided to go to college not necessarily because I wanted to but because everyone in my family did and it was a “normal” part of life, and I wanted to be “normal”. I saw autism as something that separated me from the person I wanted to be, something I had  to overcome to be happy and “normal”. I started college highly depressed. I remember comparing myself to a guy I knew who was a wheelchair user and lamenting (in what I know now would be seen as ableist) that he had it easier than me because people understood what was going on with him and he was respected and integrated. I now know from talking to him later that he was also going through internalized and outward ableism. He was just a bit further along on his journey but was still dealing with his own anger and other harmful feelings towards himself. 

Ironically, things started to move slowly - literally and figuratively - because I got thyroid cancer in my sophomore year of college. Living without a thyroid and the resulting fatigue is another part of my present disability identity. But back then it was not. Before I knew what was happening to my body I was very scared. The summer before I was starting to notice it was feeling difficult to walk. I would tell my parents about it, but they thought, like a lot of things they and others didn’t understand about me from all those years before to that day, that I was just making it up or “being difficult”. By autumn, other people started to take notice as I was dragging my foot. It became harder to walk and at one point it took me a half hour to walk a few hundred feet because my knees locked up and I had to try to walk backwards to counter the effect. That experience was truly scary for me. It was in some way a relief when I was diagnosed with thyroid cancer because at least I knew what was happening and the cause. Knowing that I became less worried and it became the people around me understandably who became more worried. Unlike my experience with having a disability, people were not telling me to fight through cancer to overcome it. I had to take time to slow down and accept what I was. People accommodated me instead of saying “why can’t you just do this.” Ironically, it was the first time in a very long time that I didn’t feel like I was swimming upstream and instead people were meeting me halfway. 

This alternate experience however did not change my opinion about having autism. I still hated it and wanted to overcome it when I got back to my regular life after the cancer treatment. And those expectations of needing to overcome it were back. What really started to change my thinking and belief system about myself was a class I took by chance of circumstance. I took a night class, something I never did before, called Disability, Culture and Equity. That class changed my life in that I would not be here writing this but probably on completely different path. It taught me about the ideas of disability not just being an internal problem with the person but a societal construction. It made me realize that I was not a bad person or incapable. It made me begin to view things differently and to form acceptance and understanding of who I am. 

I was also lucky because I found someone through a therapist who could give me support and help me become more independent in ways I never had been before, such as getting my driver’s license and moving into my own place. I was lucky too because my parents who always cared but didn’t always understand me because in the late 90’s and later there was only limited awareness of autism. They worked with me and learned along side of me while letting me direct my own Autistic needs. That was the beginning of this change and new awareness with appreciation and acceptance of myself. That was a crucial beginning of the journey I am on now. 

From there I graduated and started Jason’s Connection in 2013. It started off as just a resource list because I was finding many of the resources that I found helpful or needed were not always easy to find.  I also began a bit of blogging and podcasting. As I look back on when things started it may have been a bit crude with my newfound knowledge and perspectives, but it was a start. I started also finding more pages on Facebook on disability rights and expanded my knowledge. From there Jason’s Connection started sharing stories from others about disability culture and also how society affects disabled people. I started to do work with other local  organizations around disability and then expanded nationally. Through that I was connected with an organization for Autistic people in New England. That was the first time in my life I saw an Autistic Community. Before then I did not want to be around other Autistic people because of my bad experiences at boarding school. This was such a powerful moment to see Autistic people with each other in a supportive way that was fun, caring and empowering.  My views on this were evolving ever so slowly. 

Half way through college I immersed myself in the love of learning and knew at some point I wanted to attend a graduate program for further studying and knowledge. At one point I considered Anthropology, specifically Biological Anthropology, because I was interested in the origins of our behaviors. With all these experiences I knew I wanted it to be focused on  disability as I had been in my college class of Disability, Culture and Equity. That is when I learned about a field called Disability Studies. From there I enrolled at Syracuse University where I became further immersed in Disability and Autistic culture and studies. Syracuse had these wonderful pockets of disability culture and Autistic culture where I felt I could be myself. The classes I took were, for the most part, ones where the teachers would just accept the supports I needed instead of having to get a letter from disability services. People understood my access needs and I didn’t always need to explain why or how my brain worked. There was solidarity with other disabled people where I could find common bonds not just around access but other life experiences. There was even a group that started for Autistic people to join and hang out that furthered my pride and community in the Autistic and neurodivergent movement. I was also able to do an internship in Washington, DC, through AAPD at NDRN. There I worked around disability rights but also lived in a dorm with other disabled people in an empowering sense of community where we all supported each other and socialized. After graduating with a number of important experiences, I started working for a disability rights organization at Syracuse University. It has been a good experience as I have learned to further advocate for myself, which has been an especially important thing for me in the workplace. Now, once again, I work on projects with other disabled people where we all support and empower each other doing important work around disability rights and justice. We have fun with other peers as well as with others in our community at large. Our commonality is our shared interests!

My experiences and that of many others show why awareness is nowhere near enough. I became aware but it did not take away my internalized ableism or the ableism of those around me or make me better at advocating for myself. It took experiences more powerful than just Awareness. It took Acceptance that I got from having cancer of who I was as a person. It took Understanding and Appreciation that I learned from the Disability, Culture and Equity class. It took Empowerment and Pride which I got as I became more part of the disability, neurodivergent and Autistic community. That is why we need more than just Autism Awareness. We need Acceptance, Understanding, Appreciation, Pride and Empowerment as we move forward.

Jason Harris

Founder of Jason’s Connection – an online resource for those with disabilities, mental health, aging and other needs. Jason was awarded an M.S. in Cultural Foundations of Education and Advanced Certificate in Disability Studies from Syracuse University.  Jason is also a Project Coordinator and Research Associate at the Burton Blatt Institute, an international think tank for Disability Rights and Human Justice at Syracuse University.  He regularly contributes to the blog in his own series called Jason’s View and travels the country consulting and speaking about disability issues and rights. To read more from Jason Harris, read Jason's View