Sunday 13 May 2012

You were there all along

All those years, and it turns out we weren't alone after all.

All those months of perplexed unhappiness and that strange, floating feeling of powerlessness. The weeks and days of crying, and holding my daughter when she cried. The hours of railing against the system.

But most of all the waiting. Oh, the waiting.

According to a survey to be published by the National Autistic Society (NAS) later this month, more than a third of families wait at least three years for their child to be diagnosed with autism. Two-thirds wait more than a year. One in 10 people end up paying for assessments privately.

It took five years to get a diagnosis of Asperger's Syndrome for my daughter. Five years from her nursery teacher's first raised eyebrow and questioning comment, to the final affirmation over the phone from an uncomfortable doctor. Five years of knowing that there was something different about her, something that was starting to make her alien and noticeable among her peers, while so-called experts umm-ed and aah-ed.

The NAS survey, cited by the Observer newspaper today, said 61 percent of those surveyed felt relieved to get a diagnosis, and 58 percent said that a diagnosis led to getting more support. 55 percent said the process was long and stressful.

The article also quoted Dr Judy Gould, whose research with Dr Lorna Wing established the concept of a spectrum of autistic conditions. Gould told the newspaper: "I'm not at all surprised by these findings. We're seeing an increasing number of people coming forward, especially women and young girls, who have gone through their lives without a diagnosis and suffered quite badly as a consequence, some developing mental health issues."

For my daughter and me, the length of the wait for a diagnosis was compounded by the eternity we subsequently waited for educational and emotional support. We both suffered mental health issues. My bold, beautiful Amazon  -- tawny eyes, flying hair, quick mind and nimble fingers, who was always writing and drawing and dancing and striking poses -- shrank and faded before me. Bullied at school, she cursed her uselessness, as she saw it. I watched and despaired and berated myself for failure. In what I have since discovered is not an uncommon reaction, I cut off all my hair: a gesture of mourning, and an attempt to assert control where I still could. My daughter kept returning to the fray each day. I took up long-distance running, and made myself strong, and I fought for her.

And I wrote about it. Over the last year this blog saved me, helped me to make sense of our experiences by framing them and sharing them with friends and new readers, many of whom subsequently also became friends -- companions in my grief and frustration and co-celebrants in success and happiness when they came again.

These days, my girl is restored to herself, mostly. She has the help she needs, mostly. Our bruises are fading. My hair is growing again.

I haven't written this blog for several weeks now, wondering what direction to take now the hardest battle (I hope) has been fought and the marathon I trained so long for is completed. I've watched Grace and delighted in her. I've relaxed and celebrated and enjoyed feeling lazy. But I've known throughout that Grace and I are both changed by our experiences and that there's no going back to 'before'.

Then I saw today's article. This month marks the 50th birthday of the National Autistic Society. It is 50 years since a group of parents sat down around a kitchen table and decided to set up a support network for their autistic children. Those parents, and the charity which they established, are also the reason I have never really been alone throughout the worst times. They are the reason I can't just stop agitating for change and greater awareness now. I can no more stop campaigning and fundraising and running than Grace can stop being Grace.

So -- onwards. There is work to do. But the celebrations should continue. My child -- our children -- bring delight and a different perspective that benefits us all. So let us cherish them and champion them and marvel in them.

Happy Birthday, NAS.

Who else wants to join the party?


  1. My son was 6 when we got our diagnosis, despite the fact that we have known that there was "something wrong" since he was 2.

    Great blog by the way. i can relate to a lot of the stuff in here. x

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