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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Tate's Toothache and My Pity Party

I try hard to be an encourager. The world needs more encouragers. I especially try to be positive when I am speaking to parents of children with autism who are coming behind me. Those with kids younger than Tate need to know that it is not all doom and gloom after the autism diagnosis. But sometimes it is hard. I was born a pessimist. Pessimism comes naturally to me and “looking on the bright side” is something I have to work at. Think Winnie the Pooh’s friend Eyeore and you will have an idea of the way I often think. I have to fight through that gray little rain cloud that is right over my head. It’s just who I am. However I am also someone who has been able to overcome some of that because of lessons Tate and Sydney have taught me. There really are blessings to be found in the face of adversity.

I don’t sit around and feel sorry for myself too often. I simply have too much to do. But yesterday... Yesterday I had a pity party. In attendance were myself, and Tate from the future. He was with me as I sat and cried. He was a middle-aged man and I was a bent old woman. I was still trying to help him brush his teeth and find his shoes. I was still helping him in all the ways a mom helps her child. Her young child. Her five-year-old child. And he was six foot three inches tall.

My pity party began in the dentist office bright and early Monday morning. We were there because I had “guessed” Tate had a toothache. He cannot / will not tell me when he is in pain. He does feel pain. I am sure of that. On Friday Tate made a few references to teeth. They were out of place and seemed odd. But Tate has autism. Let’s face it. Much of his conversation on any topic is odd. Saturday morning Tate texted me that I should take his brother to the dentist to get a cavity fixed. I thought, “Oh, Tate is trying to make a joke.” He hates dentists and he thinks he’s sort of insulting Levi by saying something like that. It’s Tate’s way of teasing. But then there were several more references to the dentist. By now I should have caught on. And then Tate did something Tate VERY rarely does. When I quizzed him about all the references to the dentist and asked him what was up. He admitted that he MIGHT have a problem with a tooth. He asked for a Tylenol. That’s a pretty big deal around here. First thing Monday morning I called the dental office we use and took Tate right in. I like all the staff there. The dentist Tate normally sees was out and we saw another. There, explaining to the dentist that my son appeared to be a young man but she should probably try to communicate with him like she would a five or six year old, my eyes began to leak real tears. I went on to explain that Tate does not tell me when he is in pain so I have to guess. As the dentist investigated to find the problem, I sat and thought. I remembered that when each one of my children were small I had to be vigilant and know when they were hurting based on behaviors. It’s just what good moms do. As my children aged they could tell me when they hurt and eventually they could take care of themselves. My four oldest children are adults. They make their own doctor appointments and bandage their own wounds now when necessary. They don’t call home to tell me about their minor illnesses. They don’t need me in that way anymore. Tate is not there though. Tate will never be there. Tate will always need me and there will come a day when I am not there. I’m 38 years older than Tate.

My pity party was not just about Tate not growing up on the inside as he grows taller on the outside. It was about me. When my kids were little and they hurt, I hurt too. A mother’s empathy for her children can cause her to hurt physically sometimes. As they aged and they were able to take care of themselves some, my empathy for their pain was not nearly as intense as it was when they were small. Over the weekend when I thought Tate was hurting and he was relying on me to identify the problem and help, I hurt for him. Because Tate is never going to grow much older on the inside and be able to mature like his siblings did that leaves me forever stuck feeling the kind of empathy pains for him I would have for my toddlers.

I love the thought from the Bible about everything having a season. Probably the happiest time of my life was when my kids were all small. But now it is time for them to grow up and for me to enjoy them as adults. They will be giving me grandchildren in just a few years. And I will still have an adult sized six-year-old to care for. Life’s not fair. So yesterday I had an emotional meltdown. Several times in the afternoon I broke down and sobbed for the Tate I will never know. The man he will never become. I felt really sorry for myself.

Today is a new day. His sore tooth turned out to be related to a broken wire and twisted bracket from his braces, not a cavity. It’s fixed and his pain is gone. My worries about his pain are gone and my spirits are lifted. Today I am not sitting with the future Tate dwelling on what will never be. Today I dropped my sweet son off in front of his school and as the car door closed I said, “I love you Tate.” I expected to hear, “I love you too.” Instead I heard, “I know.” As I pulled away I smiled ear to ear, happy that he knows he is loved.

For more about trips to the dentist, click here: Cleaning, Filling and Straightening the Teeth of Autism