What’s in a label?

Lordy I’ve been slack on the blogging front!

Raising and supporting someone with special needs is certainly time consuming at every stage of their developmental journey. But I have to say trying to manage another adult full time, with all their potential activities, outings, dates, times, arrangements, appointments – while also trying to enjoy some semblance of a life of your own, sure is hard.

I am often teased for being forgetful, but having to juggle multiple diaries, coupled with the out-of-routine holidays and special requests, is confusing for someone who should otherwise be waving her 21 year old offspring goodbye and good luck and enjoying re-discovering her own mojo.

The multiple diary-thing is because Claudia, who I always assumed was just really really nosey, is currently undergoing assessment for Autism. At the ripe old age of 21.

Because she has a chromosome abnormality, “global developmental delay” has always been the primary diagnosis. Coupled with some quite significant physical challenges over the years; multiple surgeries and recoveries which have taken priority, her other eccentricities and quirks have been absorbed by us as “just Claudia”.

Like her obsession with times, dates, who is going where, when and for how long and “go home now?” and “what time is it?”

For years now I have had to run several diaries, some for her, some for the rest of us, some for just me, some hidden, some on the bench, some on the wall, some telling the full truth and some telling nothing remotely truthful in their blank spaces. So she doesn’t obsess about what I might be doing without her.

Quirks like her obsession with trains, her distress around transitioning in and out of locations or activities. Her reliance on technology and her elephantine memory. The way she links stories and people and experiences in her head. Her focus on music.

Her complete relaxation in water (sleeping in the bath, the bliss of a spa!)

Her clapping, and clapping and clapping!

All these things have combined to paint a picture of someone who presents in many ways like lots of other people. Who have Autism.

When I’m not with Claudia I make films, sometimes involving disability. I have recently made a series of films about Autism for families with a recent diagnosis, featuring families further down the path, who have things to say and share.

I found familiar things with every family, despite the diversity of people in front of me.

As every single parent reminded me “once you’ve met one person with Autism, you’ve met one person with Autism!”

But there were commonalities that I couldn’t overlook any more.

It was in preparation for that latest film project, that I discovered there is now a recognized link between prematurity and Autism (tick!) and chromosome abnormalities and Autism (tick!)

Plus the “Claudia-ness” that has seen so many others over the years assume she had Autism and also assume we knew it.

And so now, finally, we’re going through the process of getting that label.

Will it change Claudia? No, not fundamentally.

Might it open doorways to help us understand and help her? Maybe.

The latest Autism films have been made to update a series of films about Autism I made ten years ago. Claudia was 10 at that time.

And I remember the same shocking realization that – this was Claudia! These children and their characteristics and habits and obsessions and challenges – this was Claudia!

And I mentioned it to Steve and talked to people about how it was all so like Claudia and then I promptly went back to life raising her without ever considering how helpful it might have been for us all to have had that label to help her through all the transitions of her teen years; changing schools, moving three times, pets and people coming….and going.

And now ten years on we’re here again, me aghast at how obvious it all is, so this time we are finally seeking the diagnosis; the label.

One of the most obvious differences between the films ten years ago and these latest, is the way the families talk about their expectations.

A decade ago the families were strong advocates for their children; determined to do what was best and help their child learn to manage in the world.

Today the families are strong advocates for their children, determined to do what’s best and help the world change to accommodate a wider spectrum of “normal”

Todays parents are all about avoiding the meltdown rather than managing it.

Or apologizing for it.

They understand the world is more easily modified than their children. There is nothing wrong with their children.

They are unapologetic and strong and they embrace the new and perfect normal in their lives.

Autism is everywhere! Keep up!

It was a wondrous thing to realize that subtle shift is actually huge and has occurred in a single generation.

Sometimes a label is a good thing.

It helps the rest of us understand what it might mean for her, how she might cope, or not and how we can support her and be supported ourselves.

It won’t make a blind scrap of difference to her – but, like everything in the world of disability, it’s the rest of us who might become more enlightened and one day catch up.

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