A HiLife reporter’s personal experience on the autism spectrum

Symbol+for+the+autism+rights+movement%2C+a+movement+dedicated+to+bringing+awareness+to+the+spectrum.

Photo courtesy of wikipedia.com

Symbol for the autism rights movement, a movement dedicated to bringing awareness to the spectrum.

Rolando Rios, Reporter

The autism spectrum is not really understood by the general public. People probably know the word and nothing else. As I was not diagnosed until I was 13, I did not know much about it either. I have my own struggles due to being on the spectrum. It must be kept in mind that autism is a spectrum and experiences can vary wildly from person to person and not every autistic person fits an exact criterion. I fall under the high-functioning part of the spectrum, more commonly known as Asperger’s Syndrome.

When I was younger I used to stim. Stimming or self-stimulatory behavior is when a person is overstimulated and uses a repeated motion, phrase or feel certain textures when excited, stressed, happy or otherwise overwhelmed with emotions they have difficultly processing. While stimming is not exclusive to autistics it is a trait often associated with them. Common stims include but are not limited to, finger tapping, pacing, clapping and hand flapping. Before I was formally diagnosed, I dismissed my stims as personal tics and constantly told myself to stop, but it was simply a part of me that I needed to accept.

Other common traits include trouble maintaining eye-contact, difficulty understanding social cues, a commitment to routines and rituals, poor motor skills and more. A common trait is “special interests” or a hobby or subject that people on the spectrum know an abnormal amount about and they will often find jobs that cater to their special interest. My special interest happens to be creative writing. Some autistics will become nonverbal in more severe cases.

In many ways, autism has a stigma around it, one that many people on the spectrum are aware of. Some people on the spectrum will recognize they are different from neurotypical people and will cope with this by hiding their autistic traits. This process is called “masking” and it mostly appears in women with autism, but men also partake in masking too.

Even before I was diagnosed, I learned to hide my traits. Why do we hide? Well, because of the constant dehumanization, demonization, infantilization of autistic people.

The most well-known autism “advocacy” group is Autism Speaks (AS). The group was formed in 2005 by former NBCUniversal CEO Bob Wright, his wife Suzanne and their daughter Katie after finding out Katie’s son, Christian, was diagnosed with autism at three years old. Christian began to become nonverbal and developing stims. Lacking enough information on autism and seeking to “cure” Christian, they used their vast connections to secure funding for Autism Speaks.

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism,” Part of AS’ early mission statement, said

While this seems well-meaning on the surface, this has some seriously unfortunate implications. AS does not see autism as a complex neurological disorder that affects those with it in a variety of ways and can be dealt with if people on the spectrum get proper support. Instead, the organization characterizes autism as a fatal disease that affects millions of unsuspecting victims. According to them, one of the statistics they cited states “More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.”

Naturally, people on the spectrum do not like it when their neurological differences are compared to having cancer and AIDS. This anger is further compounded by the 2006 video entitled Autism Every Day. This video does nothing to dispute the claim that AS does in which AS director Alison Tepper Singer said this about finding out about her daughter Jodie, has autism. Jodie was visible in the background throughout the whole video.

“When I realized [Jodie had autism] I had sat in the car for about 15 minutes and actually contemplated putting Jodie in the car and driving off the George Washington Bridge,” Singer said.

This highlights the problem with Autism Speaks. It was not started with the goal of understanding those on the spectrum and getting them the help they need. AS was started with the intention to eradicate autism, to make those on the spectrum “normal.” It was started by parents who mourned the loss of children who were taken by the supposed “darkness” that is autism. Autistic people are not “in the dark” or “voiceless,” they have their own voices, neurotypicals just need to learn how to listen.

I had to deal with some serious self-hatred issues when I found out I was autistic, because of its reputation.

Everything sort of pieced together for me from there. Movies like Rain Man and The Imitation Game, books like The Curious Incident of the Dog in the Night-Time, all majorly misrepresenting a very complex disorder, and for what? A chance at a prestigious award, it only sounds incredibly exploitive, because it is.

“I did no research for Curious Incident …I’d read Oliver Sack’s essay about Temple Grandin and a handful of newspaper and magazine articles about, or by, people Asperger’s and autism. I deliberately didn’t add to this list…Imagination always trumps research,” Mark Haddon, author of The Curious Incident of the Dog in the Night-Time, said.

While I agree with Haddon’s “imagination trumps research” comment to some extent, using it as an excuse to not do research on selling point of your novel is lazy at best and harmful at worst. While Curious Incident’s protagonist is never stated to be on the spectrum in the novel itself, several book jackets outright state that he has Asperger’s, which could lead neurotypicals to assume that autistic people are cold, robotic and sociopathic.

Haddon took six years to say that Curious Incident “is not a book about Asperger’s.” This highlights another problem. People are not that well-informed on the subject and in an age where so much information is at our fingertips that fact is kind of sad.

Writing this editorial has been therapeutic for me and I hope that this encourages some people to research the subject further. Sometimes people on the spectrum need to be understood more than anything else.