My Question About 'Autism Uncensored' as an Autistic Dad

I don’t have a lot of fond memories of my childhood. It’s not because my childhood was awful. I imagine I had a very privileged childhood. My parents were great. My siblings were awesome, yet I don’t remember much about my childhood because it wasn’t all that exciting, at least to me.

I wasn’t diagnosed with Asperger’s until 2014. I was 36 years old at the time. I lived my entire life completely unaware of why I had so many challenges. I hated crowds. I hated loud noises. I loved to stay indoors away from both as much as possible, and yet I had to eventually learn to choose to overcome fear.

I often say that what is most important is most obvious. When reading the excerpt from the upcoming book “Autism Uncensored: Pulling Back the Curtain,” the author doesn’t make it ambiguous as to what’s most important to her. She writes, “…I believe nothing is more
important than getting your autistic children out into the world.” For the mother of this autistic child, getting him out into the world was her mission.

I am also a parent. I understand she wanted something for her child she did not think was possible. She recalls vividly how she forced him to face his fear so she could “save him from a life entrapped by autistic phobias.” In this moment I ask myself if there is a difference between fighting for our children and fighting our children.

I’ll admit I cringed while reading the lengths to which she was willing to go to prove to her son there was nothing to fear. The idea that this specific encounter was premeditated also caused me a significant amount of anxiety, especially when reading her use of force lasted 36 minutes and 45 seconds.

The article states that her intention was to help other parents in pain to “cast off shame,” and while that is a noble intention, I’m wondering how we help cast off the shame of being forced into a fearful situation. The question I am unable to answer by reading this article is the question I believe is the most important one to ask ourselves:

“What does her son remember about that day?”

I don’t remember much about my childhood. I don’t remember birthday parties and prom. I don’t remember my favorite teachers or the names of the schools I attended. I don’t remember going to see live shows or having sleepovers with friends. I admit there is much about my childhood I don’t remember, and much of those memory gaps are due to the fact that I often did not want to attend the types of events that are generally thought of as memory-making moments.

There is also something about my childhood I do not remember. I cannot ever recall being intentionally traumatized as a means for helping me learn how to be more courageous.

One of the most puzzling aspects of the author’s account of this incident is the repeated admittance of the intentional ignoring of the voices of those around her. She admits to ignoring the counsel of doctors. She admits to ignoring the needed training and certification for child restraint. She admits to ignoring the recommendation for taking a slower approach to addressing this obviously sensitive issue. She admits to ignoring the voice of patience. She admits to ignoring the patrons and staff at the venue who expressed concern for how she was handling the situation. Most importantly she appears, at least to me, to ignore the voice of her own child.

Is that what he will remember about that day?

Will he remember that his sense of agency over his own body was overridden?

Will he remember he was perhaps taught a painful lesson, that the path to courage is to use force to override fear?

It took 36 minutes of force to address his fear. When I was diagnosed with ASD at age 36 the first thing I did was to reflect on my life and the memories of my childhood, and I had 36 years of moments to draw from.

When he is 36 years old, what will he remember about facing his fears? What will he remember about facing people who may fear him? What will he remember about the things his parent(s) did that shaped his life and his understanding of courage?

As a parent I want so desperately to identify.

As parents we love our children. We want them to live well. We want them to live free from fear and anxiety. But what if the best way to teach our children how to overcome fear is to demonstrate to them the type of grace and patience it takes to overcome our fears for them?

If anything I hope parents of autistic children will read this story and others like it and understand the story as descriptive and not prescriptive. The short-term result was that he eventually got to see what has behind the curtain. He may have enjoyed the show that day. He may have even appeared to have increased self-esteem, as the author suggests. He may have learned to be less fearful of indoor spaces, as his mom claims, as the result of the day she used force to help pull the curtain back on his fear. Yet, while it may seem like a “win” for good parenting, I’m afraid there is still another curtain that has yet to be pulled back.

What will he remember about the day he was physically forced to overcome his fear?

As an adult with autism who still struggles with social anxiety, sensory processing challenges and fear of public spaces, what if the real question behind the curtain is not, “How do we force autistic people to overcome their fears and fit into our world?” but rather, “How do we challenge the world to pull back the curtain on their fear of how autism fits into the world?”

Perhaps instead of pulling our children kicking and screaming into the world, let’s pull the world kicking and screaming into the future by helping them overcome their fear of our children. Maybe that’s the memory we should be striving to leave them with. Maybe that’s the way to not just make our children better for the world but to make the world better for them.

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