What This Controversial Guardian Piece Got Wrong About Autism
I just finished reading an angry article in The Guardian that suggests the rise in autism diagnoses for bright, verbal people devalues and disregards the experience of nonverbal autistics who display aggressive and self-injurious behaviors and (according to the article) are burdens to their families.
As an autistic advocate, autism consultant, writer and presenter, I am no stranger to hearing statements reminding me that autism understanding and acceptance are still a long way off. The uninformed masses often characterize those with the “Asperger’s-type” presentation of autism as lazy, arrogant, savant, weird and lacking empathy. On the other hand, autistics that cannot communicate with spoken language or control their bodies are described as dangerous, destructive, uneducable burdens with no redeeming features that live miserable lives.
Long story short, society’s attitude can be summarized like this: if you are considered “low functioning,” we couldn’t care less about your strengths. If you are considered “high functioning,” we couldn’t care less about your needs. This is what’s wrong with functioning labels!
I hear this upsetting stuff a lot from, let’s say, a less intuitive parent, an educator who thinks they know it all, or from professionals who have only an academic understanding of the breadth and scope of the autism spectrum. But I am not used to such destructive and irrational nonsense being perpetuated by other autistics. This is why I feel compelled to respond to the opinion piece published by autistic Tom Clements in The Guardian August 26, 2019, “What Is Autism? How The Term Became Too Broad to Have Meaning Anymore.”
I’m not going to tackle everything I find problematic about the piece in depth. For example, I am not going to address his snobbery in describing his own place on the spectrum as “upper end autism,” nor juxtapose it against his stark description of the other end of the spectrum as “a profoundly life-limiting disorder that consumes every waking hour of a family’s life…unpredictable bouts of aggression resulting in torn upholstery, cracked skulls and savage bites.” I will say he seems eager to reclaim the Asperger’s label and distance himself from the word autism.
What I will address are two points. One, correlation is not causation. Just because there are more autistic people being diagnosed these days does not mean verbal autistics are the cause of society ignoring the needs of non-speaking autistics with behavioral difficulties and/or intellectual disabilities.
Get real. Society has never given non-speaking, “severely autistic” people the respect and consideration they should have as human beings. We used to lock them away in institutions where they were often abused and neglected. Today, families are expected to provide care in the family home, but are given few resources. Schools do not have the ability to tap into the potential of these individuals, and so potential strengths and abilities often do not have a chance to develop. From what I’ve seen, very few are ever taught how to use communication tools and so they are deprived of the most basic human desire to share thoughts, feelings and needs. Don’t blame verbal autistic people for this terrible situation — and certainly don’t blame those of us who are doing our part to include the important contribution of non-speaking people in events staged for and by autistic people to raise understanding and increase acceptance.
In 2015, I presented at the Autism Rocks two-day symposium just outside Toronto, Ontario. We had a two-part session on Communication. I delivered the talk on Communication Challenges in Verbal Autism. The first two hours of the morning, however, belonged to two dynamic non-speaking presenters — both young teens. One had very high support needs and was accompanied by two specialized respite workers and a parent. Using an iPad to communicate their incredible insight and understanding, presenters Adam Wolfond and Emma Zurcher-Long opened the minds and hearts of the approximately 120 people in attendance.
To realize more representation for non-speaking autistic people, one just needs to part of the change that they want to see. Work to change the system — but not to deride and ridicule the advocacy actions of those autistic people who can speak and whose support needs may be less visible.
The second and most important thing I must address is the notion that those with high support needs do not have a life of value. Certainly describing these members of our neurotribe with phrases like, “…an autistic person with an IQ lower than 30 who is prone to lashing out and soiling themselves” in an article for public consumption is dehumanizing, and when we use this kind of language, this perpetuates the very conditions that Clements laments. It allows society to continue ignoring the potential and the wishes of this population.
This is the truth: we do not measure intelligence in those who cannot communicate with spoken language. We don’t, and so we just say they lack any cognitive ability — though anyone who works in this field can tell you that many non-speaking people are interested, intelligent and curious.
We often don’t provide non-speaking students with an academic curriculum in school — we “manage them” and teach them how to fold a towel just so. We often do not invest time, money and human resources in teaching them how to be fluent with a communication tool, so they cannot tell us what they need, how they are feeling and what they’d like to do.
It is testament to their own strength of character that nonverbal people like Emma and Adam, nonverbal authors Carly Fleischmann, Naoki Higashida, and Ido Kedar are able to have their inner voices “heard” in a world dominated by those who speak. They also had champions. In their cases, it was often parents who, in spite of the need to provide often high levels of physical care and supervision to their child, still found ways to educate their curious and capable children.
It seems to me that each of these people have pretty full lives. They are contributing to the world. They have people who love them, and their physical support needs in no way detract from that.
Getty image by Dishant_S.