Home business, home education and health challenges: what makes us tic?

I first started to suspect that Goldilocks was on the autism spectrum about 6 years ago. With her unique perspectives and unusual statements, it became more and more clear that she was not like other children. And certainly not like other little girls.

I was reluctant to draw anyone’s attention to it. Her uniqueness is also her awesomeness, and I would rather people noticed and acknowledged all of her amazing, incredible otherness, or none of it. What I did not want her to have, was a sense of being different, of being weird.

When she started school, she soon became aware of her own uniqueness. And when that happened, we latched onto it and celebrated it. We explained that everyone is different, and that this is a wonderful thing. A GOOD thing. A thing that prevents the possibility of boredom. The more obvious it became, the more we explained that her unique insights are a kind of super power, allowing her to see magic in the mundane.

Then, one day, her teachers started to notice. Terms like carelessADDdisruptivedistractedlearning impaired began to be hurled at us. While I knew the teachers were doing their jobs, and really wanted what was best for our Goldilocks, each report felt like a pillow-case full of bricks being hurled full-tilt into my gut. While we were sent to run the gauntlet of psychologists, psychiatrists, therapists and counsellors, we started doing some research of our own. It was around this time that a friend of mine, studying child psychology at the time, first said the word Asperger’s.

At first I was adamant that she didn’t fit the profile. I mean, our Goldilocks was incredibly empathetic – and articulate! Two key indicators that made her ineligible for the diagnosis. But the more I studied, the more I saw similarities between the child being described, and the child I was raising. I finally stumbled across the work of Dr Tania Ann Marshall on girls with Asperger’s Syndrome, and began to see not only my Goldilocks, but myself, as well.

As we became more convinced of the diagnosis, I became less and less inclined to share my findings with others. For one thing, I knew my own reaction when I first heard the word Autism. To me, it meant disease. Disability. Impairment. I didn’t know, then, that the autistic brain is bigger, and contains 65% more nerves than a neurotypical brain. I didn’t know that most scientists, inventors and artistic geniuses meet criteria for Autism Spectrum conditions. All I knew was the marginalising. The stigmas. And I didn’t want that for my perfect girls.

I began to see that they were entirely fantastic (which I knew), regardless of which labels fitted, and which did not. The label simply groups the observable characteristics. It doesn’t change them. It neither makes them true, by it’s being applied, nor makes them false by it’s being hidden. It simply is what it is.

As yet, we don’t have an officially diagnosis. We have the suspicions of a teacher trained in child psychology. We have the confirmation of a social worker who specialises in autism spectrum conditions. We have diagnoses of both ADD and Tourette’s Syndrome, which are on the spectrum. And we have our own observable data as we live it every day. In a month or so, we’ll have a diagnostician’s word either way.

But even when we do, I just don’t imagine I’ll be telling too many people about it. And if I do, it’ll only be after whoever I’m talking to knows Goldilocks and Red Riding Hood pretty well. They need a chance to know they’re awesome, before finding out they’re au-some. Some labels just aren’t necessary, are they?


Comments on: "To tell – or not to tell" (2)

  1. I love this…. What a brilliant outlook:) I was speaking to a child psych who recently asked me ‘ what does the label matter? What does it change? The way you support the child will be the same regardless. So true.

    • Joy on a Shoestring said:

      Very true. The label doesn’t change the truth. It just puts it in a box – and sometimes the box doesn’t fit very well.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

Tag Cloud

%d bloggers like this: