Earlier this year, towards the end of April, I caught a passing reference to autism in a YouTube video that I was watching. It sparked my curiosity. Six months later, I’ve read more than three dozen books, several research articles, watched uncounted hours and hours of scientific lectures as well as videos made by autistic persons themselves. I’ve watched movies, read fiction, and dug into the webpages of various societies devoted to autistic persons. It may be somewhat ironic that I devoted so much effort and became so passionately curious about autism: one of the traits of autism is the ability to hyperfocus on a particular interest.
What I learned about autism completely destroyed the stereotypes and misunderstandings I had had about autism and autistic people. I had two views of autism: the classic kind of significant impairments of a young male, school aged, who was nonetheless a savant in math (the juvenile version of Dustin Hoffman’s character in Rain Man); and the Asperger’s kind of an adult male, condescending, super intelligent, selfish and probably narcissistic (a la Sheldon Cooper on the TV show The Big Bang Theory). These caricatures provide more falsehoods than they do truths.
Autism is a genetic and neurological developmental condition. Autism is not brain damage. It is a different formation of neurology than is found in the majority of the population. The differences in that neurology result in different sensory inputs and the way those sensory inputs are experienced by the autistic person. An autistic brain is a brain just as healthy as a non-autistic brain. It simply senses the world in a different way, and processes that input in a different way.
Ironically, there are more variations between autistic brains, than there are between non-autistic brains. This is why the proverbial saying “If you’ve met one autistic person, you’ve met one autistic person” is so true. While to be diagnosed with autism, all autistic persons must meet a set of specific behavioral criteria–related to social and emotional characteristics, to repetitive behaviors, to sensory sensitivities, and to a degree of impairments in those areas, and that these traits must have been persistent since childhood, even if only recently more manifest due to depleting resources in the face of increasing demands–nonetheless, the individual experiences of autistic persons vary widely. Current diagnostic practice categorizes autistic persons with level 1, 2 or 3 support needs, with level 1 being some support needs and level 3 being significant support needs. Someone with level 3 support is likely not to be able to live independently and may require continual care. Someone with level 1 support may live independently, be married and have children, be employed, and may do well with regular counseling.
While there is a growing awareness of autism, particularly in the school environments, awareness of autism in adults, and particularly adult women or minority adults, is sorely lacking. And supportive resources for adults are similarly lacking. An adult may receive a diagnosis and documentation sufficient to meet legal requirements for disability benefits and work accommodations. However, there just may not be resources available even if they qualify for disability benefits. And sadly companies flout and disregard disability law and water down accommodations for those meeting disability criteria all the time. Holding them legally accountable is an exercise of futility, bankrupting expense and a lot of stress and “wasted’ time.
Having read so many accounts of autistic people, the saddest thing is workplace accommodations are so ignored and yet can be so simple. Noise canceling headphones. Tinted lenses or sunglasses; perhaps hats with a brim (like a baseball hat). These would cover auditory and visual sensitivities. Education of coworkers around the wearing of cologne or perfumes. Quiet rooms where an autistic person (or heck, anyone!) can go to help to regulate after sensory overload, or to prevent such overload. Understandably this cannot be applied to every single workplace, depending on the job. But these would be such easy accommodations in many workplaces and schools.
But more sad than this is the vast misunderstanding of and stigmatizing of autism that is still prevalent in our society. Many adults with autism simply do not disclose. Some do not disclose at all, except perhaps to a spouse. Some only disclose to a very small circle of family, clergy and friends. Disclosure is, of course, an individual decision. But perhaps if more autistic adults disclosed, and our society could better understand not just autism but autistic individuals, that greater understanding could lead to greater acceptance. And Terence’s phrase, “Nothing human is foreign to me,” would help reveal the beauty of the utterly human lives autistic people live.
This Is Life!: Revolutions Around the Cruciform Axis 