Happy 2020 everyone! Elizabeth here. There are such amazing things stirring over at Silver Park Arts, that I'm hard put to pick a single one to post about. Instead, I'm going to jump back in time and share some of my older writings, as I was just coming to terms with having an autism spectrum child.
Original post here: http://www.ejswriting.com/famiglia/not-autistic-enough
NOT AUTISTIC ENOUGH
by Elizabeth Bouinatchova
It should go without saying that there is currently a wealth of autism information available - it's on the internet, on telephone poles, and in mysterious flyers that circulate by owl and disappear after reading. What is this magical affliction? Is it a gift or a curse? It seems there is as much arcane knowledge, rumor, and legend as actual science involved. How is the average person supposed to wade through this morass of misinformation?
Without writing a dissertation, I can only give my own personal not-entirely-random hypothesis of the situation: They recently broadened the autism spectrum so much that it includes behaviors that seem both arbitrary and contradictory, and many only a hair’s breadth away from what’s thought of as “normal.” This has had the benefit of bringing more attention, research and funding into the picture for autism. I think that in the next 5-10 years, they are going to start splitting up and redefining the spectrum again, with more specific diagnoses. And that’s all fine with me. Whatever works. Maybe it’s confusing now, but it’s a step in the right direction.
Since my eldest son was diagnosed “on the spectrum” I have experienced a myriad of reactions when I have to bust out the dreaded "Au" word to people (interesting that's the element symbol for gold, huh?) I've gotten awkward silence, averted eyes, frozen stares, subject changes, little sounds of sympathy, all the way up to eye rolls and outright disbelief. You see, the prevailing opinion is that my son is just not “autistic” enough. He’s adorable. He’s friendly. He’s interactive. He’s not sitting in a corner, banging his head, lining his toys up in a row. He doesn’t fulfill people’s autism stereotypes.
My kid is what they call “high on the spectrum.” And we’re very, very thankful for that. But it also comes with an enormous amount of misunderstanding. People that don’t know us well only see the bright, active kid. They don’t know about his incredible struggle to use and comprehend language. They thought his age-three incomprehensible babbling was “cute.” They don’t know about unbearable frustration of not being able to communicate.
They don’t know about the compulsive movement, the non-stop climbing, climbing, climbing, and falling, falling, falling. They don’t know about three broken bones in three years. They don’t know about the tantrums, night terrors, hair-trigger temper. They don’t know about the screaming meltdowns so intense he would practically lose his voice and cause the neighbors to threaten to call the cops. Did we put on the wrong cartoon, open a door or flip a light switch, anywhere in the house, without asking him first? Meltdown.
My absolute favorite comment to date - and I’ve heard it more than once - is: “He’s not autistic, he just needs more exercise!” Right. It makes me wonder, do these same people say: “It’s not lung cancer, you just need some herbal tea?” They don’t get it - his constant movement is not a normal activity level, it's a compulsion. He cannot be tired out into calmness. Often, he'll go in the opposite direction. He can be on the stumbling brink of exhaustion and he’ll still literally be attempting to climb the walls. It’s not hyperactivity, it’s what they call a "sensory" issue.
Look up “sensory processing disorders” if you’re not familiar with the term. It’s interesting stuff. (That’s another post for another time). But in short, sensory processing issues can cause food obsessions and phobias (we’ve got both), bathing obsession/phobia, clothing obsession/phobia - we’ve got those, too. Some autistic kids become obsessed with repetitive motions, some just become obsessed with motion (and some are incredibly averse to it - two sides of the same coin).
My son is obsessed with the feeling of balancing. He can’t sit in a chair. He must push the chair back and balance between it and the table (falls and clocks chin). Or tilt it back with his feet braced on the table (goes over backward, head injury). Or balance on the hearth, lean over to the table, one leg in the air, fall, ninja flip, floor (fractured elbow). It’s brutal. Literally. On his body and his parents’ souls.
The great news is that for “high functioning” kids like my son, therapy can be an enormous help. He’s almost 4 now and has learned to speak, albeit at a much lower age level. Communication has helped with the frustrations and tantrums. They’re only daily now, instead of multiple times per day. I suspect there are more broken bones in our future. The kid may be heading for a career in the Cirque de Soleil. That’s fine. Whatever makes him happy.
It’s tough to not be able to explain my son to people, to be met with skepticism or even suspicion when I try. But then, many people in my family defy explanation, myself included. My mom thinks that if they had the current diagnosis level when we were growing up, we would all have been put on the spectrum. It’s a little bit funny. And a little bit not funny.
My heart goes out to all other parents dealing with this strange, baffling, and sometimes fascinating condition. I can’t pretend it’s all good. Sometimes it’s horrifying. All I know is that my son is plenty autistic for me. I don’t need any more. We’re lucky and we know it, and we’re immensely grateful for it. So, scientists, research away! We’ll be watching with great interest to see what you can turn up in the years to come.
Welcome to our little blog on Family & Special Needs concerns!
Silver Park Arts is Kid-Friendly, Spectrum-Experienced, and thrilled to welcome families, children, and people with special needs. While not yet fully ADA accessible, we give you our promise to provide whatever support possible in our physical space, and also here, online, in the realm of sharing and thought. Elizabeth Bouinatchova, our founder, is a writer and mom of two special needs children. She is passionate about supporting the differently abled, and will use this blog to share her experiences, thoughts, and resources.