But He Looks “Normal”?

{Somehow I accidentally unpublished this so now I’m publishing it again. Weird, I know.}

In my last autism post about our son I shared that I’m slowly Learning to Drive Autism. It’s a simple analogy for an incredibly complex reality.

When I used to think of autism, the image that came to mind was of a child who couldn’t speak, avoided eye contact, walked around on tiptoes while flapping hands, and moaned and yelled to communicate.

When I thought of Asperger’s (when it was still categorized separately from autism), I thought of the awkward people that stand too close and shift around excitedly when talking about something they find so incredibly fascinating they can’t seem to think of anything else to talk about.

Those are the caricatures I saw on TV and movies or in magazines and online articles, this is what I thought autism was because that was the only related portrayal I’d seen. The only people with autism I had ever seen or met mimicked those stereotypical portrayals of autism.

Or so I thought.

Autism, vaguely defined, is:

a variable developmental disorder that appears by age three and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by repetitive behavior patterns


But autism, as it applies to our son and each individual “with autism”, has a definition of it’s own. In fact, it can’t really be “defined” in any one sentence.

From the beginning of our journey, my son never quite fit into the typical characteristics or “symptoms” of autism.

He looked people in the eye, spoke well – with a cute little lisp he eventually grew out of, he’s always had great physical strength and athletic ability like any other boy his age, playing with other kids and having friends has always been important to him, and, aside from a wonky pencil hold, his fine motor skills have never been an obvious concern.

In school, he was just “shy” and “reserved”. Sure, he tended to play with the same classroom toys, had minor “focusing” and “attention-to-directions” concerns but nothing the early-years teachers felt was anything “abnormal” compared to others in his class. Behaviorally, all his teachers have always loved him and described him as sweet, kind, helpful, never a trouble-maker. Everything a mother wants to hear about her child’s behavior at school, right?

However – and this is a huge HOWEVER – Home and family life – very, very very, different.

Away from the structure, routines, and enough social pressure to follow the rules, a flip of a switch turned that sweet and “reserved” little guy into a very different boy no one could recognize or contain.

In those moments, I looked at my son and thought about what I’d read about autism and saw clearly that he did fit into that category. But then, once he calmed down and acted “normal” again, I wavered and thought – “hmm, well maybe he just sensitive and has bad tantrums…” Or, as I shared in the Boys will be Boys post, I deduced this was all my fault since he only acted to this extreme with me and at home and never at school. It was all so confusing and frustrating!!

No wonder it took so long to get a diagnosis for my son, right? We – meaning me and the professionals we initially worked with – were trying to fit my son into that narrow definition of what autism is and he didn’t fit. Or did he?

What I’ve learned now that I didn’t know when our son was going through all that, is that Autism, as a medical diagnosis, has undergone significant developments and changes, especially in the past 5 – 10 years. The History of Autism, includes various labels and characteristics that have evolved and expanded with continued research. From “a form of schizophrenia” and “severe social impairment” to “Asperger’s syndrome and Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS), to “High-Functioning” or “Mid-Functioning” or “Low-Functioning” Autism to what it is now – Autism Spectrum Disorder (ASD).

Socially, people living in the autism world have coined their own terms like atypical vs typical (which, to me, just seems like a nicer way of saying normal vs. abnormal) and, most recently – Neurodiverse: A fancy way of saying there’s nothing “wrong” with people “with autism” – their brains simply function neurologically different.

Understanding this history of autism – as a medical diagnosis – has helped me better understand our son and how autism applies to him. More importantly, this understanding has helped me accept our son’s “High-Functioning Autism” diagnosis, which, 10 years earlier, may have been what we used to know as “Asperger’s”, which is now simply “ASD” or “Neurodiverse” or whatever new term we’ll come up with next.

Either way, I’ve become more comfortable saying to others – “My son has autism'”. And even then, I say our son “has autism”, though I prefer to think of autism as an adjective to describe the way his brain functions. Though even that word seems far, far, from adequate descriptor of the extremely unique and fascinating nature of our son’s mind.

In many ways, we’ve come very far in our understanding of “Autism” in our world, and personally, we’ve come a long way in our understanding of what this all means for our son. I know we – as a world – and we – our family – have much, much, much more to learn. I, for one, am excited to learn more about what this means for our son but also I’m excited to uncover all the amazing strengths, talents, and all the exciting things I know our son will achieve.

Related Posts with Thumbnails

Leave a comment

Your email address will not be published.

CommentLuv badge