John Elder Robison and the relabelling of autism

I had the pleasure of meeting John Elder Robison last week, when he was in town to talk about his latest book, Raising Cubby, at the Ottawa International Writers Festival.  John is a New York Times best-selling author who has Asperger Syndrome.

When the Diagnostic and Statistical Manual-Fifth Edition (DSM-V) is released later this month, his diagnosis will no longer exist. He will be John Elder Robison, the New York Times best-selling author who has − and who writes about life with − Autism Spectrum Disorder.
I’m all for that rebranding.
The DSM is the “bible” used by mental health professionals to diagnose people. Until now it has included distinct labels, such as Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and Autistic Disorder, to identify individuals on the autism spectrum.
But those labels have been confusing and variable, depending on the assessment or the clinician. For instance, your kid might be diagnosed with PDD-NOS at age three, then with High Functioning Autism (HFA) at age seven, then with Asperger Syndrome at age nine.

Now, with the aim of providing better diagnosis and treatment, the various labels are being replaced by the umbrella term Autism Spectrum Disorder (ASD).
This change is controversial and significant for the thousands of Ottawa area families living with autism. Certainly, there is widespread concern the new system may result in individuals and families falling through the cracks. Parents are worried their loved ones may not fit the new criteria and may then be excluded from services and supports.
I hope the opposite will be true.
Many Ottawa families desperately need supports and services. You’ve probably heard about the local mom who left her severely autistic son at a government office this week. The reality is there are other families in similar crises. There are also plenty of young (and not so young) adults with ASD in the city who are misunderstood and underserved because their neurological differences are not so easily recognizable.
I think we need greater awareness of autism in all its many manifestations.
I think we need to acknowledge that highly successful, articulate, married older adults and non-verbal, severely disabled children can and do share the same characteristics that distinguish them as having autism.
Right here in the Ottawa region, political leaders, health professionals and care providers need to recognize autism as a broad spectrum and a considerable fact of life for thousands of families.
“Autism now affects 1 in 88 children and 1 in 54 boys,” according to Autism Speaks Canada. These kids live in our neighbourhoods, attend our schools, belong in our families. With appropriate supports, there is hope and huge potential for untold numbers of them to be productive members of the community. Without adequate supports and awareness, people right across the spectrum – and their families – can struggle. How many more parents will have to give up their kids before care and respite needs are adequately addressed?
That’s why I’m hopeful about the DSM-V.
With fewer labels to grapple with, let’s acknowledge that no two people with Autism Spectrum Disorder are alike, that the spectrum of autism ranges from significant disability to significant ability, that needs are equally diverse, and that all people with autism deserve our understanding, support and respect.
If you’re looking for hope, read John Elder Robison’s books.

He’s a very cool and talented guy.

What do you think about the DSM-V changes?


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