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The History of Autism Part III: Present History

Author: Merrick Egber (July 19, 2017) On a moonlit night, on June 19th, 1986, a child was born to a couple. Like the hit playing on the radio before my arrival, the first “Invisible Touch” had happened. While I was moving through the pre-existential cosmos, unaware of a new stage in my life as a being of humanity, never would I think that I was born with anything that separated me from the masses of people.  If I was, these were parts of my ingrained personality not to be confused with anything explained by neurologists.

When I was born, autism had evolved from a niche condition confined to the child and rested by independent-minded practitioners. You could even say that I was born in the proper decade to have someone like me. By 1980, the American Psychiatric Association (APA) had finally listed “infantile autism” on their DSM III manual of mental disorders, which was a very big deal. While people would talk about autism, as something relevant and legitimate, here was the foremost authority on psychological behaviors and conditions listing it as relevant and legitimate. A breakthrough had been had!  By 1987 “infantile autism” just got shortened to “autism”, it was the time of revolutionary thinking in the field of psychiatry that “autism” wasn’t just something confined to only children but that adults could still have it too.

A year later, pop culture caught up to this new phenomenon in psychiatry with the movie “Rain Man” starring Dustin Hoffman as an autistic savant, still known as the term “idiot savant” at the time. Barry Morrow, the primary screenwriter for the movie, met this mega-savant, Kim Peek, who had FG Syndrome, not autism, and Barry promised to share his story with the world. Dustin took Peek’s personality, altered him to become much more autistic and through that became one of the first recognizable images of the condition to the world. While it has been stressed that savantism isn’t a natural byproduct of autism, and that Dustin Hoffman’s character is more caricature than empathetic, it at least shines a light that there is more going on in a lower functioning autistic’s brain than what society may have perceived.

None of these breakthroughs, however, would impact my family.  When I was very young, I had developmental delays in my motor skills, and while I had some typical symptoms of autism, I would hear about an autistic child taking the semi-circle around to an object instead of a straight line.  I would think “that’s me”, but none of the professionals knew what was going on with me. The closest to finding out was a psychiatrist who finally labeled me as having PDD or having “Pervasive Developmental Disorder”.  PDD is now recognized as part of the autism spectrum and has to do with socialization and communication difficulties, which was what I had going on with myself, autism without the exact label.

Back then, due to the new-born diagnosis of autism, I had to live the life of a neurotypical. I was usually in schools and programs that had me interact and socialize, be one with the neurotypical world. Even after autism was recognized as a special education listing in 1991 by the U.S. Government, and my form of it, Asperger’s Syndrome, was recognized through the translations of German psychiatrist, Dr. Uta Frith, in 1994.   I was still not aware that I had anything disorderly about me. Sure, I went to some special activity classes to help me with my autism, but I guess I saw it as just something that many kids may have to do, not to do with any potential deficits. It never occurred to me that I was a spoke in the wheels of a revolutionary new awareness in psychiatric circles around the world.

Flash-forward to the tenth anniversary of Asperger’s Syndrome becoming a legitimate diagnosis in 2004.   I had graduated from High School, and was ready for the next major moment of my life. I had always wanted to live elsewhere, but I was given one condition; I would have to enroll into an ILP (Independent Living Program). This was also the same time, since it would have to come up very soon, in which I was told by my parents that I had Asperger’s Syndrome. While I was given the news, it was becoming a boom decade for autism. The Autism Developmental Disabilities Monitoring Network (ADDMN) was created by the CDC (Centers for Disease and Health Control).  In 2000, fueling the rise in research which also included detecting autistic behaviors of children, a year after my diagnosis the organization, Autism Speaks, was founded.  By the end of the decade, the first movie about Asperger’s Syndrome, Adam, came out. It was also the same year that Ernie and Liezl Els’ started their Els for Autism Foundation.

Thankfully, this was probably the right decade to learn about my diagnosis. Ever since the 80s, advocacy groups that treat autism not as a disease but as a meaningful part of one’s life have sprung up. It especially reverberated in the 2000s, when organizations sprung up advocating that autism should not be cured but instead should be respected, as a mental “difference”. Now, it’s a lot easier to say that about someone like me with Asperger’s Syndrome than someone who is more “classically” based, that is having deeper deficits in social and communicative thinking, and thus many of these organizations and the people who head them are much more based in the world of Asperger’s than they are in mainstream autism. Having said that, though, the idea that what I’ve been diagnosed is not a curse, but more of a blessing and also that of a “different” personality sounds very welcoming, due to my initial reaction to the diagnosis, which was of shock and terror.  This is because I went through life as everybody else, to learn that I wasn’t like anyone else I knew at the schools I went to, for example, made me feel like I was limited in some way and unable to be what I wanted to become.  Thus to have learned, a little bit, about that perspective contemporaneously was very welcoming.  I even joined the self-advocacy group, Aspies for Freedom, for a little while when I was given information about the possible networking sites that I could be a part of, what an irony that that was a springboard for autistic pride day which happens a day before my birthday (June 18th) every year.

Which brings me to the lowest part of this article. Ever since my diagnosis, I hardly treated it as anything worthy of validity, and interest. While I did accept it, and didn’t shy away from utilizing it when I had to, it never seemed to play a major part in my life. That all changed in December of 2012, while the world didn’t end in that month, I felt like my world started to.

It was the Sandy Hook Massacre perpetrated by Adam Lanza, a gunman who went crazy and shot up an Elementary School in Connecticut, before killing himself. Due to the natural outrage over somebody killing 20 kids, and the unresolved conclusion of the incident, not only did Adam kill himself but he also destroyed his hard-drive leaving very little clues behind.  Although the obsessively detailed list on mass shootings was a giant clue as to “why”, people felt the need to blame something for such a horrific act, and I don’t know which one hurt more, the idea to blame certain types of video games, or to make commentaries on Asperger’s Syndrome, which Adam was diagnosed with. As noted in an earlier blog, I love video games, and to constantly read about banning video games, small towns plotting to destroy “violent” video games, Super Mario is a “violent” video game series, most NES games are “violent” video games, and people talking about industries self-censoring violent imagery as a defensive mechanism when gun control becomes the topic of the day, was sort of a little much to me.  But the Asperger’s Syndrome also deeply affected me.

It was reading about assumptions made about people with autism, and Asperger’s Syndrome. The idea, that Asperger’s and violence is seemingly “well-connected” almost like being different personality-wise will always create a “violent” monster, like the “creepy” old man who ends up being a loving individual but we expect all people to behave the same and the rest to have something “wrong” with them. I do believe that all people can improve, that people with social and communication difficulties should be given the proper treatments and care by professionals so that they’ll feel better in the real world, but I don’t believe that people with autism, especially Asperger’s Syndrome can suddenly, with an amount of help, be the same as those without.  There are people out there who would feel offended by those conclusions. Now, I don’t deny that Adam had been diagnosed with Asperger’s, he had a special interest in mass shootings, given the media portrayals and the myths and legends that all stem around the subject.  It’s sort of like the public fascination with serial killers, but instead of using his statistics to write a detailed book about mass shootings, he decided to become one himself.

But that wasn’t the only thing that rocked the world of anybody with Asperger’s who paid close attention to the news. A few months later, the diagnosis of Asperger’s Syndrome was eliminated from the DSM V, almost mysteriously. What the APA said, at the time, was to just melt it into the overall autistic spectrum. Interestingly enough, in the beginning of December the APA met to discuss the removal of the diagnosis. Their reasoning was that it would be easier to make a diagnosis due to the severity of the disorder.

My response? If Autism is a wide spectrum, labels should serve as checkpoints to understand what a person really is. Asperger’s is generally, if not always, high-functioning, or attached to high-functioning autism, and so there’s little to no diversity in such a term describing somebody, it is also generally thought of as a disorder that isn’t characterized by the same impairments in socialization and communication that other parts of autism have. No matter what, I will still claim myself to have been diagnosed with Asperger’s Syndrome, and I think that that hasn’t changed with any of my peers. Defying the APA? Possibly. It isn’t like they haven’t been wrong before, and I’m not sure how much credence using the label has in psychiatric circles nowadays but I would say that it hasn’t changed a darn thing with me.

So, I hope that you were OK with such a long conclusion to such a set of voluminous articles, currently, at the Els for Autism Foundation we’re making a part of the history that just might be recorded in a future article about autism history. Follow us, like us, find out about us!