During the last week, in an interview for NBC, the comedian Jerry Seinfeld discussed his growing realisation that he is on the autism spectrum.
In a week where the the other major autism related headline has been the tragic killing of an autistic child by his Mother, you’d maybe expect the Seinfeld story to slip quietly by, raising little but a passing moment of interest.
But no. Already there have been cries of frustration and outrage, concern that Jerry’s disclosure will divert funding, attention and awareness from those autistic people and families who live life at a different part of the spectrum.
In particular, Jerry’s statement that he understands autism to be a “different mindset” rather than a disorder has drawn criticism that he is belittling the struggles of others, and detracting from the real insurmountable challenges that autism throws into so many people’s lives.
Let’s slow down for a minute.
Jerry Seinfeld was not claiming to speak for the experiences of anyone other than himself in his interview. He wasn’t trying to be a mouthpiece for the whole community. He was talking about a deeply personal realisation, in public, for the first time.
Will his revelation warp the public perception of what autism is? I seriously doubt it. The very reason that so many autism families get the “he/she doesn’t look autistic” statement levelled at them time and again is this: in the eyes of Joe public, autism looks like rain man, or like a non verbal, hand flapping, vocally stimming child wearing ear defenders. No one would look at that child and think “hey, I bet you have life SO easy. There’s no WAY you’re gonna need help or support to make it in this world. I bet you do just fine in the classroom, you won’t be needing any flexibility from the teaching staff”.
Yet that is precisely the experience of so many children, and adults at the higher end of the spectrum. Because they appear, superficially, to cope in social situations, because they can communicate verbally, because they form friendships and relationships, there is an assumption that they don’t struggle or require support.
Nothing could be further from the truth. Consider if you will the following:
– the seven year old boy who desperately wants friends but can’t seem to make them, who gets moved down to the bottom set at mainstream school because he can’t work quickly enough.
– the 14 year old boy who is always on the periphery of social groups, but always the at the centre of their jokes. Painfully aware of his differences, feeling as though they are his failings.
– the 25 year old woman sobbing at her computer desk because she just read a Tania Marshall article and found echoes of herself and her battles throughout.
– the 38 year old woman with tears running down her cheeks as she struggles to make sense of her child, reframe her understanding of herself and explain all this to her partner who doesn’t seem to able or willing to “get” any of it.
– the 55 year old man who, upon retirement, tips over the edge into depression as the structure and routine that he never knew he relied upon suddenly dissolves.
All of them are real people. All of them Aspies, or high functioning autistics.
They speak, toilet themselves, form relationships, may have their own families, hold down jobs. None of this means that their life is easy, or that autism does not affect them.
My hope from Seinfeld’s disclosure is this:
~That adults in their 20’s, 30’s and older who come to feel that they may be on the spectrum seek diagnosis (if they want to) and become more confident about raising the issue with their friends and families.
~That it will shake the narrow perception of autism in the eyes of the public, so more people understand that Aspies have struggles too.
~That it will inspire young autistic people and advocates, to help them realise how much is possible.
~That it will shine a spotlight, for whatever amount of time, on to autism and the issues of our community, and that we use the spotlight to profile our priorities. Exactly the way we should have done in the wake of the Autism Speaks “This is autism” campaign this time last year.
Enough drawing lines in the sand. Jerry isn’t going anywhere. Neither is autism. His revelation will give this whole community some airtime. Let’s use it constructively.