If you think that as a person who isn’t touched by Autism, you aren’t sure how to describe it or whether you are being impolite or incorrect, rest assured, my kid has Autism and I’m as lost as you.
We noticed our two-and-a-half year old, Téa wasn’t reaching her 12 month milestones. By 16 months, with the trained eyes of parents to two other little ladies, we knew we needed to start asking deeper questions. Our journey took us to the mouth of a wolf called Creatine Transporter Disorder (CTD) that nearly devoured me whole and had me begging that the disorder was “just Autism”.
Eight months later and with CTD ruled out, and a tag of Autism formally affixed, I’ve come to think a lot definitions and meanings.
It’s likely you’ll meet some parents who are convinced it’s a condition to be cured, others who are adamant that its a way of being and there is nothing wrong with their child. As a new comer to this brave new world, I’m still unclear: is my daughter Autistic or does she have Autism?
It’s a subtle difference, yet, subtle can be very powerful.
First, if she is Autistic, this is as much a characteristic of who she is as the conditions she faces. It means, to me, that no matter what advances she makes and how “un-Autistic” she may seem one day, she will still be Autistic.
On the other hand, if she has Autism, somehow, the implication is that perhaps one day she won’t have it; that if she continues to kick-ass in lessons with her therapists (she goes to Abili-T now), and we continue to lavish glee-full eruptions of praise, slow things down for her to be able to gain mastery of small tasks and gestures, talk to her slowly and repetitively (all the while assuming she understands), the day may come when Téa steps off the Autism Spectrum and into the neuro-typical pool most of us find ourselves in.
Of the many grueling aspects of getting an ASD diagnosis for Téa, one I continue to struggle with is how to talk about Autism. How to define it to my other young children and to family and friends who are comfortable in asking, and how to describe how Autism manifests in our daughter – which I’ll tell you is ever changing.
Having described it at our house as a word that describes how a person’s brain organizes and uses information was simplest way I thought of to explain it to our 6 year old and 4 year old. And yet it falls short, because understanding the word doesn’t make it any clearer to them; they still worry about what it means about their littlest sister, and mommy can’t quite figure out what to say without saying things that totally un-pc.
I am keenly aware that how we define or describe something says very much about what it means to us and can shape perceptions and feelings for others.
So, as a parent with a young child on the spectrum, see myself as having a special responsibility for how I talk about Autism – even as I tease out what to say about it, and despite being certain that what I say will change as I journey along this brave new world my daughter was born into and brought us all along with her. It will change as I become more comfortable with the diagnosis. It will change the more I talk about it and idea’s get clearer, and it’ll change as my daughter grows and the day comes that I need to explain this to her.
In a house where we don’t strive for normalcy (I was the proud bearer of a purple/yellow “Why Be Normal”) and discussions of different/same don’t often arise because by-and-large for our kids there is no “one” normal, is our two-and-a-half year on who experiences life on the spectrum different?
According to our family philosophy, she isn’t. And yet, she is.
The signs of difference are everywhere and in everything: what Téa can do, to how she reacts in different settings, to different things, and with different people. Which is why the “See Things My Way” campaign created by the Miriam Foundation has the potential to be so very profound; it if they take it all the way – as I would if it were a campaign I was running – it can help create healthy, smart, relatable definitions that foster understanding across the spectrum which to me, encompasses all of us; because we are all somewhere along the spectrum of Typical.
As I think about how I see things and how I talk about things, my mind jumps to how we are defining Autism in our cultures and societies. How are we permitting government services, and the revenue agency to define it? How are we accepting that medical bodies define it and classify it?
And what role do we need to play in those definitions as the parents, caregivers, and family members who understand it most?
I learned recently that Aspergers is a culture, not a neurological/communications disorder. I couldn’t wrap my head around it, but I can say, ok, if as an Aspergian you tell me it’s a culture, then please, tell me more and eventually I’ll understand.
So as my family and I embark on this journey of exploring what it means to live with Autism, raise a child with Autism, and exist in a typical society with ever evolving definitions of oh so many things, I’ll keep telling you all more, and eventually, I’ll understand and hopefully you can too.