April is Autism Awareness Month. What does “awareness” actually mean? Most people on the planet have HEARD of autism, so technically they are “aware” – they know it exists. But does that mean they know what it means? What an autism diagnosis could include? How a person with a diagnosis of autism could behave?
I didn’t. Until last year my “awareness” of the Autism Spectrum was the movie Rain Man. I had heard of Asperger’s and knew that meant a person diagnosed with it was technically on the spectrum but was “higher functioning,” whatever that meant. I thought I knew more than I did, but it turns out it was largely (and still is, to some extent) based on snippets of information and assumptions that were filling in the blanks.
Here’s the definition from www.autismspeaks.org:
What is Autism Spectrum Disorder?
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
Our little man (not so little now, he turns 9 next week) was diagnosed with ADHD and anxiety a couple of years ago. We had been seeing some behaviours that seemed a little bit outside the “conventional” kid’s behaviours, but largely dismissed them as his own unique mannerisms and personality. The anxiety caused some, the ADHD caused some, and we were figuring it out.
Fast forward to early 2015 and the counsellor at his school suggested we do some additional assessments. We didn’t really know what that would mean or involve, but didn’t think it would lead to any further diagnosis.
He speaks. Very well, in fact. He makes eye contact. He expresses emotion, although sometimes in a different way than you might consider appropriate or “normal.” He shows love. He shows empathy – to everyone but his little sister, of course. Unless she’s sick. Then he’s ALL about taking care of her. He has his own, sometimes completely misguided, sense of humour. We know our little man and these things all seemed pretty normal, without a lot to compare to.
There were a few things we wondered about. In times of high stress or overwhelming situations he can withdraw, almost check out of his environment. It was more frequent was he was younger, like the day we brought his sister home from the hospital and she cried all the way home in the car. He spent the entire ride staring at the car door and wouldn’t engage with us. In moments when he is SUPER excited, he will tap on the table repeatedly or his hands will shoot out from his body as if the energy is simply too much to contain and just has to stream out of his finger tips. It wasn’t the “flapping” that is so frequently a marker, but we knew it was something…but it didn’t really impact him so we had never really explored it further.
Our family doctor didn’t believe he was autistic. Our paediatrician said “If this child is on the spectrum I will retire tomorrow.” Yes, he struggles with anxiety and focus, but that’s all it was. Or was it? Clearly something was happening at school, outside the comforts of our home and our (then eight) years of knowing him so completely, that the school staff felt was worth investigating. Something that the doctors weren’t seeing in the 15 minutes glimpses they had of him during our seemingly always rushed visits. So we followed instructions and started down a path of questionnaires, questionnaires for his teacher, meetings with psychologists…
Time seemed to both slow down and totally speed up at the same time and by June we were meeting with a doctor at a children’s clinic and hearing that our son, our first born, our little man, was indeed on the spectrum.
What the doctor said is that really, the autism won’t be the thing that causes him challenges in life. The ADHD and anxiety will be what we have to watch and manage, and that the ASD is really just a baseline that might affect HOW we manage the other two. For him it is a very different diagnosis than some other kids, and I hesitate to tell people because of the uninformed assumptions people make (like I used to). And from what I now understand, EVERY diagnosis is different from the last. It is truly a SPECTRUM and no two diagnoses are alike. The markers that confirmed his diagnosis (I feel like I’ve written that word 400 times in this post, sorry) includes all the stuff that actually makes him AWESOME. For one, the “specificity of his passions” – he doesn’t just love planes, he loves the Air Canada Dreamliner. He doesn’t just want to be a pilot, he wants (this week, anyway) to be a pilot with Japan Airlines and start his career on the smaller regional routes on a propeller plane. His love of lists and schedules. These are the things that make him who he is.
We need to be more PATIENT. We need to LISTEN. Our kid is so cool, watching him build Lego or write out our schedule for the day is something that makes my heart almost burst with pride, love, excitement. His focus when doing something HE wants to do is absolutely unwavering. But patience and taking the time to listen are things that we are working on.
It’s taken a long time for me to write this post. I feel, in a way, like we’re “coming out” as autism parents. We didn’t want him to be labeled, because while it explains some of the things we’d been wondering about, it does NOT define who he is. What this diagnosis has done has taught us to know our son better, to understand his world, how he perceives situations and how to communicate with him in a way that makes sense to him. It has enabled us to find him resources and support to help him be successful. It has helped the school support him in a much more effective and meaningful way. But he’s still who he was before.
There is still SO MUCH we don’t know, and I never feel as if I will learn it all. But ultimately, I only need to learn OUR KID. We need to be experts on HIM, and what HE needs. And how to get it for him. So we move forward. And some days backward, but we keep moving. We keep learning.
I found this video that, for me, gives a really great and clear explanation of ASD. If you are at ALL curious about this diagnosis, I absolutely encourage you to watch it. This YouTuber “Just a Skinny Boy” is on the spectrum and speaks incredibly well about autism, what it means for those diagnosed and how to help people with ASD.