(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.
She writes…
(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!
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Kudos to you and your wife! For fighting your daily struggle and for sharing it with the world. I have 2 boys w/ Aspergers and feel guilty for using any of the few services available because I've seen first hand through my amazing friends that battles they fight every minute of every day.
Happy stories are fantastic, but they are just as rare as that 1 in 100. Reality is not sinking in fast enough about how severely this epidemic is going to affect our health care system, our work force, our future. We need more journalists like Anne to bring to light the intensity of what Autism is doing to our families and our communtties.
This is so sad. When will people see the difference in mental retardation with autistic - type symptoms and just autism? Most people with autism (like myself, my husband, and both my kids) to understand and have patience with them. If you have severe behaviors to deal with find a GOOD ABA scientist. They work wonders if you follow through on their training.
Suzie,
I am a great believer in ABA and am currently getting my Master's in ABA. However, ABA helps with behaviors and routines, my son is 5, nonverbal, and also has SIB (self injurious behavior) and we have our BCBA for home (after fighting 5 months with insurance and feeling out loads of paperwork). This is not a cure, it to help manage his Fragile X/Autistic behaviors. He is also learning PECS, but we are working hard now to help him in the long run. Those with severe autism have less "feel good" stories out there for a reason. People like a happy ending. My happy ending will be my son eventually dressing himself, being potty trained, and being able to have some independence - which is not a hollywood happy ending. I don't dream of a cure, I dream of advancement in science to help manage the areas in his body that make his life so difficult - we are close. Fragile X research will help more then our Fraggles, Autistic kids, it will help with a lot neurological issues. My dream are PECS to have it's own language on Facebook and apps for McDonald's to help our kids mainstream easier. Things like that will help him have his own voice - whether it is verbal or non-verbal. For me I dream of a day where my son tells me he loves me, in whichever way works for him.
I'm kinda thinking if there was a "magic bullet" for curing the severest of those with autism that people would be lining up in droves and it would have been blasted over every form of media in the world by now. I would love to think of my son as possibly being "cured" in the future but realistically I don't suspect that will happen. On the horse therapy note...nope no miracles there but I will tell you there is something kind of magical about the way the horses interact with my son and also about the way it can flop his mood from severely nasty and uncooperative to a sweet somewhat happy "typical" kiddo if even for just a few hours. We don't go to standard horse therapy but have two of our own and while we did TRY official horse therapy we found it too structured and too demanding for him...the therapist was always trying to make him follow this rule or that or this instruction or that and threatening "no horse time if you won't listen to me" ugh....so now with our own we go over when we want...he gets under and around and close to and on top of our boys and he helps to brush and lead and feed and water them...it isn't all about getting on their backs or making them walk an obstacle course while working on his "core stability" (with CP that is an issue but I figure if he is having to make adjustments constantly during a slow walk through a field or around an arena while the horse is going around natural obstacles or in circles or whatever that helps as much as a "course") more power to you autism daddy...it is each persons individual journey and we have to do only what works for us
oh yeah...and see...told ya I would read it :)
Thanks Katrena!
Oh wow! I am a first timer to your blog and was actually drawn in from the moment I saw your minivan photo. Other than the fact that I have a blazer (oldie but goodie)that could be my photo! Your honesty is so so very refreshing. It's late here but I will be back...
Welcome Sheri! And if you're on Facebook check out my Facebook page http://www.Facebook.com/autismdaddy for the full Autism Daddy expereince...
thank you autism dad!!! I made a comment on an article last week...a feel good article! My son has severe autism...nonverbal,,freak outs,,,anxiety,,ADHD and extreme hyperactivity!!!!! PeOPLE NEED to see the other side of autism which is not very pretty.
Not sure why this just showed up on my page today, but I want to say thank you for your honesty. I have two sons. My oldest has Asperger's and my youngest is severly Autistic, non-verbal, and not potty trained either. He is 10. He bangs his head. Goes from lethargic to so hyper he throws himself into an asthmatic attack and the cycle starts all over again. He also has seizures. I have a hard time with the "spin" put on Autism as well. There is no yellow-brick road, magic pill, or diet that is a magic cure. Support and just others taking the time to try to understand can go a long way!
You know what I hate- those wellness centers who pray on parents like us- I'm sorry -and I don't mean to offend anyone but I've spent so much money throughout my sons13 years - one was a "DAN" doctor who had some stupid devise that was supposed to tell us what my son was allergic to( I should have ran out of there as soon as I saw the technician- she was a young girl who looked sickly and had thin scragly greasy hair) and all you had to do was put your hand on some computer mouse and a list of his allergies would appear on the screen- see what I mean- so stupid- needless to say - it said he was allergic canola oil- so we went home- took him off canola oil and prayed to every god that would listen- but - nothing! I can write a book on all the stupid cures we bought into over the years! How about you autism daddy? What was the craziest " cure" you ever tried for your son?
lol I have actually heard some positive things about Zyto.... won a free scan, waiting for my unit. :)
Nothing is a magic wand, everything is a process. :)
This is where we are: http://www.youtube.com/watch?v=KLjgBLwH3Wc well getting there ;)
always love your posts but this really struck home, here in the UK kids on the spectrum are routinely miss understood and pushed out of society, as a single parent i struggled for 5 years to get my 9 year old diagnosed - he was 8 months ago, his school will not take him as he is aggressive and his childminder gave up a few months ago as he has started running away-I have now given up work and he is with me 24/7 as nobody else appreciates his problems as he communicates so fluently, he will however never have a formal education and possibly therefore never work, I won't live for ever so what then for a child who can only function calmly with one person???