Chuck McIntyre has terrible executive function skills. Keeping organized, remembering to do the tasks on his to-do list, and even getting started with chores like doing laundry or doing the dishes often seems as complicated to the 27-year-old Mattapoisett man as a 1,000-piece puzzle with no picture of the final result to go by. On the flip side, he can memorize quotes and facts from the sophisticated literary and non-fiction books he’s read, and his astute attention to detail tells him as soon as he walks into a room if even the minutest of details has been changed.
Such is the dichotomy of autism. Stigmatized as a pervasive disability throughout history, autism in contemporary times is considered more as a type of “neuro-divergence” than a disability. Autism is a spectrum of human neuro-diversity that is best understood under the more progressive “social model” of disability – ways in which our society is organized that is the disabling factor for an individual – rather than the traditional “medical model” of disability – where the individual is disabled by their ‘impairment’ or ‘differences’.
McIntyre was diagnosed at the age of four with Pervasive Developmental Disorder (PDD) – “Which is kind of like saying ‘medium’ autism,” said McIntyre on November 20 before a diverse group assembled at the Mattapoisett Library to hear him make his presentation titled, “I Am Autisticus.” His presentation placed emphasis on what it’s like to be autistic, autism as a condition, socializing and communication, mental health, and overcoming disability discrimination among other things.
Unlike some physical disabilities that are apparent to the observer, autism is less apparent, and some of the visible stereotypical emergences of autism such as repetitive body motions or the absence of verbal communication is only the proverbial tip of the iceberg of the complexity of autism that exists within the individual.
Pointing to his head, “That hides one of the most important, most mysterious organs in the body: the brain,” said McIntyre. “You can see someone is blind… or bound to a wheelchair,” he said, and perhaps one could try to experience a sliver of what life without sight or the use of one’s legs would be like. “But there’s no way I can make you understand what it’s like to be autistic. I can only describe [it]…”
Chuck used his existence as a cisgender male, a male whose gender identity matches the sex he was assigned at birth, as a way to explain his point.
“I have no idea what it’s like to be a woman – I will never have the hormones or the body of a woman,” so everything he knows about being a woman is by talking to women and reading about the female experience, he said.
For decades, there was no consideration for the autistic perspective, no voice for a population that has historically been stigmatized, institutionalized, and marginalized. All that was known about autism was shared from the perspective of non-autistics until 43 years after the first diagnosis of “autism.”
It was Dr. Temple Grandin and her book Emergence: Labeled Autistic in 1986 that began the shift of the dominant paradigm, ultimately leading to a movement of self-advocacy and civil rights. The autistic perspective of “nothing about us, without us” demands that their voice be a part of the autism conversation, which until now, had been led by ‘ableist’ beliefs on how autism should be ‘treated’, ‘cured’, and perceived autistics as otherwise broken and needing fixing.
McIntyre was limited to 90 minutes for his presentation on a topic that is so inherently complex and fascinating that he could only touch upon some of the aspects of autism he wants most for people to become aware of, accept, and include in society as simply a variation of the human neuro-diverse experience. In fact, as McIntyre put it, he would need the equivalent of three Victor Hugo novels to give non-autistics a comprehensive education on autism and the autistic experience. (For the non-English major, Hugo’s novels are some of the longest ever written.)
“The [autism] spectrum is not a straight line,” said McIntyre. “Each individual is very similar – we all have things in common, just like women have things in common,” he said, returning to his original analogy. For McIntyre, he acknowledges his “slightly above-average” vocabulary usage and his skill of articulating his ideas.
“But I may never be able to drive,” he said. (“And that’s because the people in this state drive horrible and I can’t think ahead enough to predict everything they’re going to do and my anxiety flares up”).
Autism is not something you grow out of, said McIntyre. “I will always be autistic.” And there is nothing here to cure, he said. “A cure is paradoxical. There is no Chuck McIntyre without autism.” The most famous autistics throughout history: Einstein, Mozart, Newton, Michelangelo, to name a few; are these people who needed to be ‘cured’?
Holding up one of his recent paintings featuring small representations of some of the brilliant autistic minds past and present, McIntyre said, “None of these people here who have done many brilliant autistic things … would have done the things they did without autism.”
Therefore, a ‘cure’ for Chuck McIntyre would be a tragedy, indeed.
“You can have awareness without acceptance, and that happens to us…” said McIntyre. “You can be very aware of what a woman is… of what a transgender person is… but still don’t accept them.”
McIntyre would prefer society to focus more on making the environment we all share better for autistics and more accessible to the neuro-divergent rather than focusing on how to change the neuro-divergent to fit in with the ‘neuro-typical’ world.
“I am a person, not a ‘puzzle,’” said McIntyre. “And if I were a puzzle, I’m giving all of you a cheat code.
“We’re not missing a ‘piece,’” he continued. “We’re just so different (from each other as autistics) it’s hard to figure out how to make this world accommodating and inclusive to us.
“My job is just to familiarize people with autism [and to] act more compassionate and be more prepared,” said McIntyre.
McIntyre is an advocate for autism awareness and acceptance and a social activist dedicated to combatting racism, sexism, and the injustices of the world. He is a regular on ORCTV with his “The Human Truth Junior” series during which he reads and discusses children’s books that promote tolerance and diversity. He is also a personal care attendant for a young autistic man, and is currently developing a strategy to tackle the complex nature of carefully-yet-efficiently placing groceries into bags as an employee at a local supermarket.
By Jean Perry