I received an email this morning from the parent of an adult with autism, significantly older than Ben, asking for clarification of something in yesterday’s post, Severe Autism in the Time of Covid.
“You wrote, ‘many thousands of people trapped with a hellish, vicious, heartless, unrelenting monster.’ Please clarify who is the ‘monster?’”
I’m glad he emailed. It let me know that I might not have been as clear as I meant to be in keeping autism and the person suffering from autism completely separate. This distinction is an important one (and at the heart of much of what I’ve written, most recently here). But it’s always worth repeating. The following is an edited and expanded version of what I wrote in my reply.
Autism is a “hellish, vicious, heartless, unrelenting monster” for those suffering directly from it (the person with autism) as well as their families, other caregivers, etc.
And this bugs some people, but I see severe autism as something akin to cancer. A person with cancer is like a person with severe autism, each suffering from a disease/disorder. They are not Cancer, and Ben is not Autism.
I know there are those who consider autism a “difference” and not a “disorder.” I absolutely understand that perspective for people who are high functioning to the point that they have knowledge and insight into themselves enough to have that view, and I would never argue with them. They are the experts when it comes to themselves.
But I’m afraid many of those (but not all high-functioning autistic people by any means) who chafe at my description of Ben’s life and his disorder have had little or no experience with people like him, or trust that parents like us are experts when it comes to our children’s severe autism. The reality is, even though they are autistic, some in the higher-functioning community know little if anything about the kind of autism guys and gals like Ben suffer from.
Ben, like literally all of the severely autistic people I have had contact with over the past quarter-century, has been robbed blind of countless life experiences many people on the high-end of the spectrum can have.
Not to mention neuro-typicals, like me.
The list is practically endless, including getting married, having children, gainful employment, living independently, taking a walk (unaccompanied), riding a bike, being by themselves without someone no more than one room away, having sex, driving a car, telling a joke, explaining if and how they feel sick, or depressed, or anxious, or scared, and on and on and on. All of this was snatched by the hellish, vicious, heartless, unrelenting monster I call severe autism.
The monster also shaped our family from the moment Ben was diagnosed at age 2. His twin brother’s life has been altered in profound ways that I rarely write about because he can do it himself if he so chooses (Jake, who is not autistic, is a fine, expressive writer). Every single aspect of my and my wife’s life were equally impacted. When I realized Ben was autistic, I knew that everything I had imagined our future might hold was replaced by a black hole of utter uncertainty.
And boy was I right. Spending every other weekend for the past 9 years driving to and from Cleveland, where Ben has lived because Illinois services for the disabled are absolutely horrible and Ohio provides so much more, and moving permanently once I could retire from my job, is just one example. All of this is merely one bit of another endless list brought on by the hellish, vicious, heartless, unrelenting monster I call severe autism.
I hope this clarifies yesterday’s post for anyone who might have thought I was referring to people with autism as monsters. It is the opposite. They suffer most from the monster.