Too Many Feel Good Stories On Autism….And…. Please Don’t Send Me Anymore Autism Links!
September 30, 2011
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Now Reading: Too Many Feel Good Stories On Autism….And…. Please Don’t Send Me Anymore Autism Links!
September 30, 2011
(originally written & published on September 30, 2011)
People are always sending me links to feel good stories about autism. They mean well, but they don’t know the true side, the tough side…
And lately when autism is on the news it’s a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad.
“They’re just a little quirky like the Asperger’s rocker on American idol a few years back” people might think.
I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won’t eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.
I like to read the feel good stories too…but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, “why give them research $$, they’re just quirky kids….” the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc…”
I know there’s always a lot of controversy around Autism Speaks and I’m NOT a fan of a lot of what they do, but I will say this. I have no issues with AS with the way they portray autism. Others in the Asperger’s community feel that AS doesn’t represent them, and maybe it doesn’t. But it does seem to represent those with severe debilitating autism. My son has SEVERE autism…
And I fall into this same trap myself of posting semi “feel good” stories. A few weeks ago I posted a NY Times story (written by Amy Harmon) on my Facebook page about young adults with autism transitioning into the work force. The article focused on a 22 year old young man named Justin with autism who’s in the “middle of the spectrum” struggling to find a place as an independent adult. I posted the article because I thought it was interesting and kinda inspirational, but something always kinda bothered me about it.
And then today the website Age Of Autism posted an article called “The New York Times and the Downplaying of the Autism Disaster”
In the article the author, Anne Dachel, takes the NY Times to task on 4 years of autism articles and says that at every turn they downplay the severity of the epidemic.
The Age Of Autism article gets into the vaccine angle quite a bit and I know there’s lots of people on both sides of that issue. But wherever you are on that issue, I think we can all agree that there’s an autism epidemic in this country/ world and that there’s TONS more people with autism now that there were a generation or two ago.
And I really like the way she describes her issues with this most recent NYT article on Justin.
(The NY Times author) focused her feel-good story on one young man who, despite his limitations, is working to live independently. Justin struggles, as all ASD people do, but he’s light years ahead of so many kids I know with autism. Giving us a talented, verbal, intelligent young man like Justin neatly pushed aside the severely autistic people of the same age. Harmon was good at describing the problem, but she offered us no solutions. She calmly told us Justin barely talked until he was 10 years old with no explanation. Harmon gave us the rate of one in 100 with no alarm. She noted that over 90 percent of autistic adults are unemployed, which is a scary concept considering the epidemic rate of the disorder. Harmon wrote that autistic adults are out there in group homes or “living with parents.” Really? I’m still waiting for some reporter to actually back up that pretense by showing us the 40, 60, and 80 year olds living in those “group homes.” (And I don’t mean someone with eccentric behaviors that could be passed off as autism. I want to see the head-banging, rocking, non-verbal adults who are middle aged and older.) And I want a real journalist to find the autistic adults with a history where people remember that as a toddler they were talking and normally developing and who suddenly and dramatically lost those skills.)
Now I say…Rock on! I totally agree! Stop telling me that they are just diagnosing autism better! Find me the THOUSANDS of adults in nursing & group homes with debilitating autism!
And on a sligtly different subject…I started this blog post by saying, “People are always sending me links to feel good stories about autism”. You know what else, people are always sending me links and articles about? Music therapy or horse therapy or dolphin therapy, etc., etc., etc.
“Have you heard about that? I’ve heard great things about that…”
They’re thinking that it’s a way towards a cure or healing these kids…
And while my son enjoys music therapy and might love horse & dolphin therapy, we know it’s just another fun activity and in the best case scenario he’ll pay attention and maybe get something out of it… but we’re not expecting something magical or miraculous to happen
Like when we got our autism service dog. We were extremely realistic in our expectations. We hoped it would help with some safety issues and maybe Kyle would build a relationship and have some empathy towards another creature. And it’s worked out nicely. It’s still alot of work but totally worth it.
But people ask me about the dog DAILY. And I can hear in their voices when they ask the questions that they were looking for / expecting a miracle. Sorry, no miracles here!
If we can get our severely autistic son Kyle even 50% of the way towards that young man Justin in the NY Times article we would consider that a miracle.
Sorry for combining 2 topics in one there… I was on a roll…
Thanks for reading! I’m anxious to hear your thoughts and feedback!
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).