National Road’s Jennifer Stevens offers this compelling interview with her brother Jeffrey. His frank, sincere, and pointed answers to her questions put a very human face on a growing national condition which has baffled experts and created social anxiety both for those who suffer from and are encountered by autism.
by Jennifer StevensApril is Autism Awareness Month. Autism has been a part of my life since April of 1988 when my younger brother, Jeffrey, was born. It was several years before Jeffrey was diagnosed and the world was not-so-aware of autism at that time. Nearly 28 years later, the Center for Disease Control now estimates that 1 in 68 children has been diagnosed with Autism Spectrum Disorder (ASD). While ASD is more prevalent and the world knows much more about autism than it did in 1988, awareness does not always equal acceptance.
Jeffrey is one of the friendliest and happiest people I know, not to mention a Star Wars aficionado. Despite missing some social cues, he is giving, loving, and forgiving in many ways that most people aren’t. My heart has been broken more than once when I’ve heard people make fun of him or call him names or judged him for symptoms of ASD that are beyond his control and will likely never change. In a country that reveres equality, that doesn’t always seem to include those with ASD. More than once, I’ve had to do some deep breathing when I’ve heard people say things like, “I’d rather my child have cancer than autism” or “I don’t want my kid to be that weird kid” or made fun of Jeffrey for riding “the short bus.” But while I’m readying my torch and pitchfork to right these injustices, Jeffrey is unaffected in a way that I can’t be. He says, “Sis, it doesn’t bother me” and instead of wishing that he could be more like me, I wish I could be more like him.
This article weighed heavily on me as I tried to determine what issues about ASD would be most beneficial and impactful in a reading on autism awareness. After an unfortunate experience, I thought about writing on the use of the word “retarded” and how it should be eradicated from everyday lexicon. It’s been misappropriated into a term that is hurtful and offensive. (You can read more here: http://www.r-word.org/). Then, I contemplated writing about the lack of resources for adults with autism. Many programs for ASD are geared toward children and adults are left without services that they may desperately need. (You can read more here: http://www.nytimes.com/2015/09/06/opinion/sunday/adult-autistic-and-ignored.html?_r=0). Finally, I thought about writing about how siblings of those with ASD are affected and the implications for their lives. (You can read more here: http://www.researchautism.org/family/familysupport/documents/OAR_TeenSiblingsResource.pdf). But none of those topics seemed to resonate with what I wish people knew about autism. So I decided to ask Jeffrey what he thought the world should know and here’s what he had to say (responses in italics):
What’s it like having autism?
Oh, I like it. It has its perks. It has it downsides, too. Overall, I’m perfectly happy being autistic.
What are the perks?
Well, I’m kind of obsessive-compulsive. I like to organize things. I have very simple tastes. And when I get focused on something, I focus on it.
What are the downsides?
Sometimes I don’t think of what my actions do to affect other people.
How do you feel when someone tells you that your actions have affected them?
I feel bad about it. I feel sad and it makes me feel selfish.
How do you react when you’re feeling sad or bad?
Sometimes I cry a little bit. Sometimes I get upset and feel like I’m a horrible person.
What about the emotional effects of autism?
Well, autism, to me [the world is] just black and white. To me, people are either are happy or upset. I don’t see any gray.
So how does that affect how you interact with them?
If they’re happy, I would just talk to them and just see how they were doing.
What about if they were upset?
I try to avoid them.
How does it make you feel if you think someone’s upset?
I get upset too.
What happens when you’re upset?
Well, sometimes when I get upset, I just want to yell…It makes me feel on edge.
Why do you think you’re autistic?
I don’t really know. I think we’ll eventually figure it out. I just don’t know. Guess I’m just one of the lucky ones.
What do you think people outside of your family think of people with autism?
They don’t really understand it. I feel like they don’t…they might think I’m strange that I act and behave differently.
What do you wish those people knew about autism?
I wish they just knew how we function, how we think, and just roll differently. How we don’t have very many interests and we always fall back on those interests, and people are like, “Oh, he’s just talking about the same thing over and over again” and I can’t help that.
Do you think the world is accepting of people with autism?
Hmmm…I think they are. I think it can kind of be 50/50.
Do you think that will change in the future?
Yeah, I think it will. I look at the world glass half full. I like to think positive in life.
I hope so too, Jeffrey.
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