I am a mother. No matter what may happen in my life or in the lives of my children, that will never change. While my role as a mother is a huge part of my identity, it is not all of what makes me who I am. Just take another look at the logo for this site – all those M words (and that’s the abbreviated list!) – there’s no one word to define me. The same is true for all of us (I hope).
It’s funny (strange, not ha-ha), how many decisions I make every day to define or not define my children. Our youngest can be a ball of energy, but if I introduce him that way, most people hear “hyper.” Likewise, the word “Autism” conjures all sorts of stereotypical images (Rainman, anyone?). So when describing our oldest son, who’s on the Autism spectrum, I play this weird game of chicken, avoiding labels for as long as it’s practical, until the risk for an inaccurate (or hurtful) label is too close, then I crack. If my kid is gonna be labeled, I’ll be the one to choose and use the label first, thank you very much, then you’re welcome to follow suit.
I’m not that rabid, really. All I ask is people-first language – put the person first, the descriptor second. Example: If you call someone “autistic” the focus is on that person’s Autism. But if you say “a person on the Autism spectrum,” the focus is on the person. Can you imagine if just one word was used to define you? What one word could cover it all?
All of this has been bouncing back and forth in my head, as I wrestle with how I feel about two, recent, high profile stories, connected with Autism. First was the story about the young woman on the Autism spectrum who is running for Miss America. So much of the press came across like “See, “they” can be just like “us!” (as if “we/us” is anything to strive for). Then there was the news that some children appear to be “outgrowing their Autism diagnosis” (again, as if persons on the spectrum are “less than” and should strive to overcome that).
The only reason my husband and I put our son through all the evaluations and therapies is so he’ll (hopefully) find it easier to navigate the world that’s geared toward the rest of us. Many a night I have railed against how unfair it is that the rest of us don’t have to adapt parts of our personality in order to communicate and understand him better.
I use the quote on the T-shirt pictured with this post quite often these days, because it’s the best and shortest explanation (to date) for how I hope all people will come to understand Autism. Persons on the spectrum aren’t malfunctioning versions of the rest of us. Like someone for whom English is not their first language – so easy to mock and measure them by their awkward phraseology or stilted language, until you hear them in their mother tongue.
Oh that we all might come with translators or instruction manuals for our different operating systems.