World Autism Day

On Tuesday in Belfast, my friend and I watched from our car as a small gaggle of children and their parents descended on Stormont to "Stand Up for Autism", AutismNI's "contribution" to World Autism Day which is today. We saw the balloons, filled with hot air go up into the ether, just like they did last year. They will eventually pop just like the hopes and dreams of the parents whose children have been diagnosed in the last 365 days. For many of those parents, requests for services and understanding have received the same hot air that filled those balloons.

From our vantage point we could not see the steps of Stormont, but imagined the children, just like last year, being forced into a photo shoot to show the world the "face" of autism.

We thought about how many of those children had dual diagnosis, like bi-polar disorder, Alexithymia/ADHD/ADD/Dyslexia/Dyspraxia/Hypotonia/ Sensory Integration Disorder/Mitochondrial Disease/Diabetes/Down Syndrome/Cerebal Palsy/Auditory Processing Disorder, etc. We also thought of our own children's many medical and neurological conditions, problems that rarely get a look in where their label is concerned.

Subsequent photos of the Stormont event will probably be accompanied with text portraying these children as the face of autism, when really, autism is multi-systemic, incredibly complex and does not begin or end with the A word. Actually, if my child 'just' had autism, there really wouldn't be a problem.

I wondered how parents whose children don't have a special "day" might be feeling about World Autism Day. If our children had cerebal palsy or muscular dystrophy, we would want to know why our children's condition did not have its own day.

After further discussion we realised that this rally,apart from being a vehicle to bolster public exposure of AutismNI, actually detracts from the seriousness of the condition called autism, by making it appear as a singular difficulty. Most of us who are parents know that a diagnosis of autism is often accompanied by other equally serious difficulties. Trying to explain or portray autism as having one or even two faces is not helpful.

Anyway, our concerns about this day were unfounded. Very few people attended the rally and even fewer were made aware of it via the media. The understanding of autism remains as elusive as it did prior to today.

Balloons are far less controversial though the 'hot air' metaphor is timely.