Saturday, June 25, 2016

The Evolution of Autism

In the past twelve years I have heard, “Autism? What’s that?” from more than a few people. And I’ve patiently answered. After all, twelve years ago I had almost no idea what autism is.

Originally, when asked, I quoted a definition of autism that went something like, “Autism is a neurological disorder that limits a person’s ability to communicate and learn from their environment. A person with autism may have trouble with communication and social skills, and they might engage in repetitive behaviors and have limited interests.” Of course, if given the opportunity I would expound on that definition significantly, because offering that general and very broad definition never really painted a very clear picture of who my son was and what his differences were.

Many, many times, I probably left the impression with people that autism is a very big and scary beast. Back then, that is what autism was to me.  

When we first encountered autism it seemed like a powerful villain in a dark movie. It lurked in shadowy corners like a kidnapper who was holding my son hostage, just out of my reach. Autism frightened me like nothing I had ever known. And my definition of autism reflected that. Autism does not intimidate me now like it did back then so I can define it just a little bit differently than I used to.

Ten years ago, autism meant: discrete trials and flashcards, long team meetings, therapists in my living room for hours at a time, and a second mortgage to pay for it all.

Autism was stereotypic behaviors like toe walking, posturing, squealing, and my constant reminders of “calm hands please.”

Autism meant drool bibs and diapers long after peers outgrew them.

Autism was a love affair with vacuum cleaners.

Autism meant memorizing acronyms that everyone around me seemed to already understand without pausing to decipher, always leaving me a sentence behind while I tried to keep up.

Autism meant learning a whole new vocabulary and using words like perseverate and echolalia on a daily basis.

Autism meant owning every character from the Thomas series, so they could be lined up and worshipped, but rarely played with appropriately.

Autism was staying awake for hours at night to make sure Woody’s hat did not come off his head. And autism meant if the crayon from the sacred Blue’s Clues notebook was missing, we searched as long as it took to find it.

Autism turned bath time into a painful battle and haircuts into torture.

Autism was locked doors and the fear of wandering.

Autism meant, “Please. Please. Just take a bite” and “He hasn’t pooped in days.”

Autism was transition warnings, meltdowns, visual schedules, and routines without flexibility. Autism made me hold my breath, always waiting for the other shoe to drop. 

Autism meant anxiety and so many fears. There was the fear of storms. And loud noises. And people in costumes. And dogs. And bats (because there might be one somewhere out there that would swoop down and flap in his hair). And police officers. And other children.

Autism meant I was constantly explaining behaviors and making excuses for the differences.

Autism meant that I dreaded detour signs.
That was a lifetime ago, but only yesterday. Somewhere along the journey, as my son has matured and time has passed, how I see autism had changed, It has changed just a little in some ways, but a lot in others.

Perhaps it is sort of like Stockholm syndrome and I now identify with my son’s captor.

Perhaps it is because I have just come to accept what is.

Perhaps it is because all the early intervention helped to eliminate some of the hardest parts of autism.

Perhaps autism has evolved as my son has aged.

Perhaps it is because autism was never really as scary as I thought it was in the first place.

For whatever reason(s) I have grown somewhat complacent with autism.  I do not embrace autism. I do not even like autism. I just do not fear autism anymore.

It was definitely a gradual thing. It did not happen in one defining moment. It’s not that we have slayed the proverbial beast that I perceived autism to be, or even that we have tamed it. Autism is still with us. It still sometimes seems bigger than us. But mostly it is in the background. We used to revolve around autism. It was at the center of everything. But these days,  most days, it lives with us quietly.

These days autism means IEP meetings that go well, and an advocate who is like family to us.

Thomas the train and Blue’s Clues have been forgotten. Now, autism means shelves and shelves overflowing with movies and obsessions about movie personalities.

Autism means Legos.

Autism means that we only get haircuts on Thursdays but they are not traumatic for us.

Autism means a peanut butter sandwich, chips and 3 cookies presented in the same way every day for lunch.

Autism means cheese pizza, lots and lots of cheese pizza.

Autism is literal thinking and explaining the punch line of a joke.

Autism is funny misunderstandings.

Autism means peers who are willing to help and educators who genuinely care about my son.

Perhaps in years to come I will feel differently. It could be that as my son’s peers begin to drive, go off to college, and wed, my vision of the ugly monster will be resurrected. I can imagine as I get older and my son needs a sibling to step into his life as his caregiver, that I will redefine autism once again. But for now, these days, autism is just a quiet part of who our family is.

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  1. It was difficult for me to put into words where I was with my son's autism. I actually started to feel a little guilty because I felt I should be more worried than I am. "For whatever reason(s) I have grown somewhat complacent with autism. I do not embrace autism. I do not even like autism. I just do not fear autism anymore." You put it into words for me...the fear has melted away and I'm now able to be with my son without panic lurking in the back of my brain.

  2. I have enjoyed Tate's Texts from the beginning but I was surprised how much they had changed (evolved) the last time you shared them. I think Tate is still a work in progress and I'm looking forward to seeing what surprises he has in store for us!

  3. What an absolutely beautiful post! So eloquently put for others to understand what autism is/means, looks like, feels like. As a provider (BCBA), I often see parents who feel completely defeated after being told for the first time that their kiddo has autism. For them, there is so much that is unknown and that can be incredibly scary as a parent. Your post not only touches on when you too felt overwhelmed, but I love that you shared your journey on how you became to embrace what it means for your son to have autism. I hope that your blog spreads awareness and hope! Keep up the good work, Mom!