A recent MSNBC piece on autism entitled ‘growing up with autism’ was a well written, well researched and responsibly written article. It highlighted a worry that all parents of autistic kids have – the future. What happens when our kids become adults?
“Once they lose the education entitlement and become adults, it’s like they fall off the face of the earth” as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America…
The same is true over here in the UK as well.
The much discussed Combating Autism Act was to allocate US$1Billion to research and:
Grossman’s early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill shouldn’t try to take on too much…
A ‘consortium of activists eh?’ – lets not beat around the bush here. This consortium was the mercury militia – A-CHAMP, the NAA, SafeMinds, Autism Speaks, Generation Rescue etc. They wanted the money to go on research searching in vain for a link between thiomersal/MMR and autism. It didn’t quite work out that way, but its painfully obvious that they did manage to scupper the dire need of helping autistic adults.
However, advocacy groups vow that the moment the bill passes, government funding for adult services will become their next priority
Yeah, right. I’ll believe that when I see it.
There’s a whole bunch of people here who need to wake up to reality. Autistic adults have been in existence for any number of decades. My great aunt and great uncle, both born before 1920 were amongst them. The Autism Hub has some of them. They had no services beyond institutionalisation. Autistic adults currently have little to no services. This is not a new scenario and it behooves this ‘consortium of activists’ to put aside their short-sighted, unscientific agenda and step up to plan for the future. A mad dash for a non-existent cure helps no one except the quacks who’s pockets are lined.
So what could help? Well, Lee Grossman’s 30 page document would’ve been a start. The other thing of course is challenging perceptions.
Many families are sustained knowing that, by raising awareness of autism, they have already given their children the gift of a meaningful identity. “If this was 10 years ago, my daughter’s classmates might say she’s the one who talks to herself all the time and flaps her hands,” says Roy Richard Grinker, an anthropologist at George Washington University and father of Isabel, 15. “But if you ask these kids in 2006 about Isabel, they say she’s the one who plays the cello and who’s smart about animals.”
The more peers of the same age group understand about autism, the more likely they are to be kind, caring and integrate them into community life.”
We need to start taking a long term view. This won’t be pleasant for some sections of the community to accept but we must stop looking at autism that something that affects children primarily. We must stop the headlong rush into dangerous, unproven ‘treatments’ that do nothing for autism and start looking at realistic ways we can move society and autistic people closer towards each other. We must start demanding more responsibility of those who elect to paint themselves as authorities on autism and then proceed to dehumanise autistic people with words like ‘poisoned’ and ‘epidemic’ and ‘train wrecks’. We must start to look skeptically at autism organisations who are actually single-issue groups promoting quackery.
We must start to listen to autistic people – adults – about service provision, about the future of autism advocacy. The one certainty in life is that children become adults. To ignore this issue is tantamount to burying one’s head in the sand.
Left Brain Right Brain 
Yes! So many parents can’t seem to invision their autistic children as autistic adults. Like somehow they’ll magically be typical at the age of 18. One of my biggest worries lately has been how we’ll support Patrick financially and in the many other ways he’ll need it when he gets older.
You’re right of course. [note to self – stop being an ostrich] [shopping list = buy crystal ball]
Happy Thanksgiving
I look forward to my future with Charlie—-it may not be easy, it will be different than anyone might have thought of, it will be good.
Thank you Kevin
Happy Thanksgiving to all even if you don’t celebrate this day in your country.
I asked my mother about that tendency once, a few years back, and she told me she thought it was obvious that parents only fought for services for children, adding that “one will fight for adult services when one’s children are grown up”.
I now finally have all the fancy paperwork necessary to be eligible for services, but there are very few to be had, and the ones that exist are either illegally withheld, useless or of poor quality, so I asked her if she felt up to lobbying for things to improve, at her age and her busy schedule. After a lot of protests along the lines of “it’s so odd, shouldn’t these things exist, since you need them?”, she finally did realise that she was contradicting herself.
If she can do it, I’m sure other parents could as well, if they could only be forced to think about the issue.
The thing that irritates me most about the mercury wackos is that they could be using their time, money and influence to make things better for all autistics – adults and children. Instead, they waste time trying to cure their kids with bogus therapies, only to find out that they’ve spent a decade to make their child no less autistic.
The cynic in me thinks that they don’t care about autistic kids, really. They care about making the case that their kids were poisoned by a drug company in order to participate in a fat payday.