Preconceptions of Autism
I was nervous before my interview. Up until this point, my interactions with people with autism have been among either children in a treatment setting or the speakers in an academic setting. When Casey Reilly first walks up, one of the first things he says is “I’m sarcastic and I have a weird cynical-esque view of Autism.” Then the interview began. Instead of an interview, it felt like I was just talking to a person, who happened to have Autism, about his life. I often times forgot about the questions I had meticulously prepared a day previously. Instead I just listened to what he had to say and became extremely interested in his life as whole – the aspects of his life directly affected by Autism, indirectly affected or not all. In the middle of the conversation I asked him how he identified (as an Autistic person, a person with Autism, on the spectrum, etc.), because we had discussed it in class and I was curious. His answer surprised me because it’s not a perspective that we’ve been exposed to in class or seen in the literature; he said he identified himself as simply a person. Most of what’s written about Autism is by people who are self-advocates or are very expressive and passionate about their diagnosis. In other words, they consider Autism a salient part of their identity. However, there isn’t much writing about those who have Autism, it’s a part of their lives, but the Autism doesn’t necessarily define who they are. Casey was able to give me insight into this perspective. He admits that Autism has influenced who he is and his interests, but it doesn’t define him.
“I lost all my language around three, I don’t remember it though.” Casey was diagnosed with Autism at three years. Immediately upon diagnosis he received in early intervention largely due to his mom’s persistence. Here remembers attending lots speech therapy and occupational therapy between ages three and five, but he wasn’t conscious of any difference between him and other children. He just thought he had a lot to do, going between his different therapies, playing games with adults, etc. Through the early intervention, his language returned and he was able to attend elementary school. This was largely due to the advocacy of his mom.
Casey explained that his mother is lawyer and ultimately changed the trajectory of her career both for and because of him. “She switched her whole life around for me, and that’s insane.” Though this is an incredibly selfless act, it’s not necessarily unique among parents who have children with Autism. In class we discussed the effects of Autism on parents, how it changes their life not necessarily in a negative way, but instead changes their perspective on the world and other people.
Casey went on at length about his admiration of his mom. He said if it weren’t for her, her advocacy and her insistence on early intervention, he wouldn’t be a functioning member of society as he is today. He admitted that his Autism didn’t just affect him but his entire family. On top of providing for a family, his parents “ha(d) to provide for (their) kid with Autism, (to) get the right services, get the right help.” Due to the services Casey received, he was able to attend elementary school and middle school. He later went to a school for children with Autism from 7th to 11th grade, then changed schools to a different high school and graduated in 2013.“I was tired of kids screaming in the hallway every single day, tired of the environment,” Casey told me after I asked him why he changed high schools for senior year. The right to an education for children with Autism is a battle that has been hard fought.
“With Autism comes obsessions i.e., music, smash and driving.” These were three common themes of my conversation with Casey. Without fail, any question I asked would end up leading into a tangent about one of these three things – I now know more about the world of competitive Smash Bros. than I ever thought I would. Casey had been played Smash Bros since 2004, but started playing in competitions in 8th grade. He would go every Sunday as it became his “outlet to be social and not feel pressure of school and life and everything.” There are many well-documented cases of people with Autism having obsessions. A relatively new obsession for Casey is driving. He boasted that he put 107,000 miles on his car since getting it three years ago. He goes on long road trips to places like Texas, Oklahoma and Colorado with friends to Smash Bros. competitions. However driving served a bigger purpose, it allowed him to mature.
Getting a car was a huge mental step,” for Casey, it served as an indicator that it was time to grow up. After high school, he attended the Musicians Institute in Hollywood to study how to make electronic music and ultimately became certified as a sound engineer. Music has been his lifelong passion, starting with drums at age three, and something that he hopes to pursue professionally as a DJ. Even though I only spoke to Casey for a couple hours, it became very apparent that music, Smash Bros., and driving are very important aspects of his. They are a large part of who he is and how he operates and connects with the world at large.
“People don’t necessarily believe me when I say I’m Autistic.” One of the most visible signs of Casey’s Autism is the handicap placard that has been registered in his name since he was three years old. Most of his friends don’t know about his diagnosis, or even recognize it, until they ask about the placard. Throughout my entire conversation with him, I kept forgetting myself. With his excessive sarcasm and, at times crude humor, it was no different that talking to any other 21 year old man. He attributes his ability to the early interventions. He’s learned to work at it, but doesn’t necessarily consciously think about his Autism and how it affects him.
Another interviewee was Portia Iverson. She previously worked in Film and Television but after her son was diagnosed with Autism, she went on to found several Autism organizations and is now a huge driving force for Autism awareness. Connie Lapin is also a mother to a child with Autism and spoke about the struggles a parent goes through in this situation. She said, “you don’t have the answers (as a parent), but you have choices.” There isn’t a clear direction for treatment of Autism, but there are often different options and it falls on the parent to choose for their child. Ron Suskind used his son Owen’s love and appreciation for Disney movies to communicate with him. Owen later went on to use Disney as a bridge to connect with other students while attending school.
Autism may not be at the forefront of Casey’s mind but this is a stark contrast from the speakers we’ve had in class and the readings we’ve done. They were mostly self-advocates who held their Autism as part of their identity. This is especially true in Lydia Brown’s piece on Identity-First Language. She discussed the value of her Autism and wanting to be referred to as Autistic because it was a salient part of her identity. Casey’s view was that his Autism molded him to become the person he is, subconsciously.
The Individuals with Disabilities Education Action (IDEA) is a federal law that guarantees all children with disabilities have the right to access a free and appropriate public education (FAPE). After attending public school from 1st through 6th grade Casey then switched to a specialized school for Autism from 7th to 11th grade. There was a wide range of students at that differed in their severity on the spectrum, but Casey didn’t think the school personnel treated the individuals differently based on their varying ability. He felt like he was “treated like dirt.” The clause of the IDEA which states that the education must be “free and appropriate” ‘appropriate’ is hard to define; it became evident that the treatment Casey received wasn’t appropriate. He, as well as others in his class, felt patronized. So, he ultimately ended up changing schools his senior year because he “wasn’t going to graduate from (that) labeling hellhole.”
“Interventions for Children With Autism Spectrum Disorders in Inclusive School Settings, Cognitive and Behavioral Practice” (Koegel, Matos-Fredeen, Lang &Koegel, 2011) outlines interventions for children with Autism in school settings. Though these interventions are effective, all the research is in vain if they aren’t carried out properly in the school setting. They require teachers to tailor their methods of instruction to the needs of the specific students. Based on Casey’s experience, there wasn’t much of a difference in how the teachers treated students based on their varying levels of Autism. It is written in the IDEA that all students with disabilities are to receive this ‘appropriate’ education, but it ultimately comes down to the teachers and staff at the school to carry out this part of the law, which doesn’t always happen, as is exemplified here. Casey switched to a school for students with learning disabilities in general, which was as normal of a high school that he could attend. There he was able to socialize more and make friends, something that wasn’t the norm at the Autism School.
“I don’t want that label, I just want to be some dude who’s an eccentric video game player or music maker.” In my psychology class we’ve discussed the importance of hearing multiple stories and perspectives of people with Autism, because each is different and specific to the person. Talking with Casey reminded me of this. Though we hear stories of all sorts of people who have spoken to my class, it’s still not everyone’s experience with Autism. Casey represented a view on Autism that isn’t hugely represented, but is important to understand. I just remember the saying “If you know one person with Autism you don’t know Autism, you just know that one person.”