A Different Perspective

Today I read this article in the Washington Post written by a mother like me, a mother of an autistic child. In the article, she describes in detail one instance when she felt forced to drag her panic-stricken son into a concert arena against his will so he would have the chance to see Elmo. Then maybe overcome what this mom described as ‘fear of indoor spaces’. The piece, written by Whitney Ellenby, is adapted from the author’s upcoming book in which, according to The Washington Post’s description, “details her struggles and triumphs with her son’s autism.”

After reading I was left with a knot in my gut and yet, I needed some processing time to understand why. How could that story bother me this much? I’m no stranger to making decisions most parents would not understand or agree, or dealing with stressful situations in public. Yet, my usually overly active empathy ‘sensors’ and ‘warnings’ did not light up as usual for this mother, at least not as much as they did for the son.

Then it hit me – there is something significant missing in the article, and it has been systematically missing in our society whenever we attempt to bring forward the dialog about Autism: the struggles Autistic people go through. Not their parents, not their teachers, not their neighbors, not the people standing by.

Because no matter how many judgmental glances or cups of soda were thrown at that mother as she dragged her son into the arena; no matter how hard that 5-year-old fought back, or how physically and psychologically exhausting it was for this mother to drag that screaming and kicking son across the arena. It was just as hard, if not harder, for him. The mother had a goal, the young boy had only fear, confusion, and possibly even pain.

Please understand that I’m not pointing this out to question a mother’s choice. My opinion about her method is not the point here. The point is that the book is about her struggles and triumphs over Autism. The entire article does not present a single insight about what the little boy was going through, other than the apologetic explanation to the arena bystanders  – “he’s got Autism“.

At the top of the article, the author explains: “I hope to educate people about the burden families face when their autistic children have tantrums in public spaces.” That’s where I started to get worried. I have a problem with this sentence coming from the mother of a child in the spectrum when she is writing a book related to Autism.

First, because her kid did not have a tantrum, he had an Autistic Meltdown, and it’s entirely different. Second, because I’d rather clarify the burden autistic children face when they have a meltdown in public places (or anywhere for that matter). I prefer to explain that loving parents would be too busy trying to comfort their children and ease their pain during a meltdown, and this is why they will probably not give attention to bystanders and not give a rat to what you think of them at that time.

Then she goes on to say “I’m also reaching out to fellow parents in pain to remind them to cast off shame,“. Not only an article but an entire book about the pain and shame of having an autistic child. To me, this is a self-centered, retrograde, outmoded idea. If one truly intends to cast off shame, how about starting by not calling it a tantrum, or not offering an explanation that sounds like “he’s broken” followed with “but it’s not my fault, I’m just a martyr of a mother, please recognize that!”

I do not deny it’s hard. Like any child, every autistic child is unique, and a disability can generate a host of concerns directly related to their well being, happiness, and their future. I will not deny how stressful it can be for a parent to acknowledge these barriers. I also know daily life is likely to demand adjustments that most parents will never experience, and this can be isolating. But painfully shameful? No, it is not.

I learned from my own experience that when I see a parent having a hard time, all I really see is a moment of crisis, not a reflection of all their qualifications as a parent or in life. Neither it is a testament to the quality of their offspring. I also learned that parents are usually well-equipped to handle these crises. In the few rare occasions when help is needed, I will offer. Otherwise, I’ll move on.  I also decided it would be just fair to automatically assume the world had extended me the same courtesy.

More importantly, we have read and heard enough over the years about how parents like me feel. Even more, Autistic people spend their entire lives being taught how to read others and how to anticipate the effect of their actions on typical people, being forced to develop sophisticated equations to decipher human behavior that could make the best AI architect green with envy. Now it is our turn to do some work. It is time for us to start talking more about how autistic children (and adults) feel. Let’s talk about what we can do, as individuals, parents, and society to accept, support and help this individual thrive alongside us.

Speaking of parental suffering does not help here. Instead, it leads to conversations of cure, of ‘fixing’ and ‘making look normal’ which in turn leads to leaving those in the spectrum feeling ostracised, defective, and excluded. The irony is that we, as the neuro-typicals and self-proclaimed empathy experts, could be more aware of that.

So, why not move in the better direction, to a better understanding? We know very well the human race was never good at accepting what it doesn’t understand. How can we empathize with what is unknown to us? We need to hear from Autistic people themselves and from people who are familiar with their strengths, challenges and with the Social Model of Disability.

The article I read is none of that, and it could have been. It could have told you that an autistic meltdown is not a tantrum, and is much more similar to a panic attack. Like a panic attack, it is caused by severe anxiety or fear, and it is a physiological response that occurs when our fight-or-flight mechanism is triggered by identifying a perceived threat to our survival. But it didn’t mention Sensory issues. Neither in the article nor in the follow-up post, published in the upcoming book “Autism Uncensored” website, in the attempt to contextualize the event after a swarm of strong reactions to the Washington Post’s publication. All the while insisted on using the word tantrum several times again.

The initial article mentioned her well-intentioned attempts like “flashcards, photos, play therapy and gradual exposure to feared indoor spaces,” yet left me wondering about any efforts to address Sensory Processing Disorder as the reason why her son feared such places. Maybe she did, we don’t know. I believe it would be a critical point to mention since this could very likely be the reason her son was scared. It is essential for people to know, especially parents and caretakers, that Sensory Processing Disorder affects three-quarters of the autistic children, making them much more likely to experience Sensory Overload.

Sensory Processing Disorder causes the brain to process information differently, sometimes not being able to correctly ‘filter’ the information it receives. As this ‘misprocessed’ sensory input accumulates, it starts overloading the brain with more than it can efficiently process. When this happens, sensory information like sound, smell, light, touch, can provoke stress, anxiety, and even physical pain.

People who experience Sensory Overload will typically avoid sensory overstimulation, like going to loud or crowded places, being exposed to bright or fluorescent lights, strong smells, etc… They avoid it because it can be overwhelming, painful, and hard to recover from. This avoidance is not about preventing an irrational fear, and should not be treated as such.

In autistic people, sensory overload may often be the cause of meltdowns. It is not far-fetched to assume that a 5-year-old autistic child that refuses to enter a sports arena would do so because the experience can be overwhelmingly painful. It would make sense to investigate the relation to loud sounds, bright lights, crowded areas and maybe slowly try things like noise-canceling headphones, visiting the place on quiet times, or just giving it time to understand what the triggers are.

I worry that other parents may decide to take Whitney’s words as the words of an expert vouching for a proven successful technique. They are not. It might have worked on her child, but every case is different. Most of all, remember: there are lots of information on her perspective and little insight on her son’s experience.

Once again, the conventional approach that focuses on teaching those in the spectrum about social skill, being mindful of not disrupting others and behaving in a more ‘standard’ way to avoid being singled out. I’m starting to see some hypocrisy in that discourse. How come we spend this much time in the effort of adapting our autistic children, students, patients to our world, basically forcing Autistic people to accept and comply with our norms? Then we justify it by saying it is for their own good, to give them a chance of success in life. Is it the entire truth? How can we be sure if we place so little effort into putting ourselves in their shoes and accepting them for who they are?

We can do so much better than that. We are at a unique point in time when we have access to precious information coming from amazing, incredible adults on the Spectrum, ready to help and to share their own experiences and guide parents and professional with a level of insight that was not available before.
“Nothing about us without us” is their motto, and sounds abundantly fair to me. I feel very fortunate as a mother for the support this fantastic community can provide to my son, and also to me.

I’d rather hear from them, than reading yet another book about how having a disabled child made somebody’s life’s that much difficult. I know its hard, I get it. Now I need to learn about the things I don’t quite understand yet. Right now, I’m looking for a way to understand why we put ourselves and others through so much suffering by insisting on fitting all humanity into the same mold.

This is why, as a parent of an autistic child, when it comes to being better equipped to support my son I would much rather learn more about Neurodiversity and the untold history of Autism, on a narrative that confronts myths with facts as I found on NeuroTribes, by Steve Silberman. Or a book like The Thinking Person’s Guide to Autism, offering insight from parents, professionals, and autistics themselves – a collection of evidence-based, no-nonsense, practical and, positive information for anyone whose lives have been touched by autism. I would rather read anything by Temple Grandin, who said: “What would happen if the autism gene was eliminated from the gene pool? – You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”

I believe the best way to “cast off shame” is to understand there is nothing to be ashamed of in the first place. To spread a powerful and positive message of equality. To deny the idea that humans started off perfect, and any inconsistency in the mold must be corrected or shunned. To indeed cast off shame we must embrace the fact that the human race is ever evolving, and that our future and our survival relies on diversity.