So the folks who are creating the new DSM (Diagnostic Statistically Manual for those of you who haven’t taken a psych. class), are deciding whether or not to obliterate the term “Asperger’s” in favor of the ASD diagnosis.
While Aspie and Asperger’s won’t be gone from the American Lexicon anytime soon, and I’m sure Webster’s isn’t thinking of hitting the white out, I personally don’t see anything wrong with calling those with Asperger’s and those with the PDDNOS diagnosis, people with autistic spectrum disorders. Especially since I know that by using the ASD medical term in lieu of Asperger’s or PDDNOS, millions of children will get healthcare and educational services who would otherwise not under our current, nonsensical standards.
Many California parents already know that those kids and adults with the H.F. autism diagnosis get sorely needed IEP’s and regional center help, while the aspies and pddnos kids are left out in the cold. The bottom line is, the schools, insurance companies and government will look for reasons NOT to give out services in order to save money, why give them an arbitrary way to deny folks help… when the reality is, the difference between HF autism and asperger’s or PDDNOS is really just.. in the name (and maybe in the way the symptoms manifested themselves initially. Children who do not have language delays are considered Asperger’s in the current DSMR, while those who did have language delays and may have the same current functioning level as those with asperger’s are called HF autism).
It’s just a name. So many parents are terrified when they hear the “A” word and are reticent to accept it for their children, resulting in many kids not getting the early intervention they need. Why not work harder on educating people about what the word “Spectrum” means and what a SPECTRUM disorder is? Take the terror out of the word autism.
Again, I can’t imagine the word asperger’s will really take much of a hit if we modify the medical diagnosies…. and a lot of good may come of it.
Still, the powers that be are in the process of deciding. I wish they’d put some money into educating the public about what it is everyone’s squabbling about. And for all those young parents of children with HF autism out there (or asperger’s, or PDDNOS), a rose is a rose is a rose… I worry mostly that the lack of appropriate information and education about what AUTISM is only brings misguided animosity and jealousy from neurotypical parents who are worried that precious funds are being taken away from their children’s education… or the old “I don’t see anyting wrong with him, why is everyone making all the fuss. Maybe he just wants attention.”
I know first hand how frustrating those attitudes can be on a parent of a young child; especially a parent who has to fight tooth and nail to prove their kid needs and deserves all the help he can get.
Here is the video that Autism Speaks had to pull because so many people and organizations wrote in complaining about it. While normally, I would not post something that I am personally opposed to, after reading many comments on various disability websites about this, I think that it’s best that people decide this matter for themselves.
Autism Speaks, however, is a large corporation that takes lots and lots of money from folks for research and for the purpose of producing videos like this for the sole purpose of influencing a mass audience; therefore, they really need to be very careful about producing something like this, with the implication that it speaks for the majority of families affected by autism.
I believe that the writers and producers of the video, two fathers who have children with autism, had the best of intentions in advocating for “autism awareness.” However, I really don’t think they stopped to think how offensive this might be to many and how angry it could make people.
On the other hand, as a writer, one always wants to evoke some sort of strong reaction, be it for or against… it lets the author know that their viewpoint has been heard and opens the floor up to discussing the subject. In this case, the subject is autism — one near and dear to me, as well as most of you reading this (after all, why would you be at a site called autistic genius if you weren’t yourself touched by autism, had a family member with it or a close friend?)
So here it is, watch first… then I’ll give you my two cents, for what it’s worth.
First of all, from a dramatic standpoint, that voice is scary on par with John Carpenter’s music from the original “Halloween”. While it’s effective, expecially for this time of year, the narrator really has no place speaking as if it is a demon possessing my son (or anyone’s son for that matter, or daughter). A voice like that needs an exorcism, and my kid, definitely not in need of one of those. Autism is not a disease folks, at least not in my eyes… it is a wiring of the brain that is not neurotypical and it manifests itself in many different forms and is different in anyone, hence it’s called the autism SPECTRUM.
Having autism can cause challenges and disabilities, there’s no doubt about that. But it isn’t a cancer needing to be cut out.
From an emotional standpoint, that video just makes me feel terrible. I have to wonder, was it the intention of the authors to make people with autism and their parents and relations feel miserable? If the intention was to educate others and frighten THEM into understanding there are people who need help, or to be aware of the challenges those with autism face (and their families face, though the emphasis in this video is obviously more on the impact to the family than the person with autism) — were they not aware that this would depress the hell out of the rest of us?
Sure the tempo picks up halfway and its mantra turns to one of “we can beat this thing, fight, fight, fight.” But hey, this ain’t a football game we’re talking about here. This is autism. This is who many people are. And for all the people on the spectrum who can’t talk, feed themselves, comprehend, communicate… there are just as many who are true genius’s, gifted innovators, scientists, artists, musicians, teachers, inventors — and of course, everything in between.
Now maybe it is easier for me to have this viewpoint, considering my son is on that high end of the spectrum; and yes, I expect he’ll go on to lead a wonderful life and profoundly affect society and those around him using the many skills and talents that all come out of his autistic brain.
Even so, I would never let him see this video. My son is 11, so I still have a say in this… but what happens when he’s old enough to watch these things without me screening them for him. Something like this can only make him feel bad about himself for no damned good reason. And for that, I am truly pissed off at this video.
Sure, in the road from diagnosis at 2 years old, when my son couldn’t speak or communicate — up to this point, where he is high functioning/aspie, has been a helluva long haul for him (and for us, his loving family and most fierce advocates)… but mainly, it’s my kid who had to do the work, not me. Yes, it was challenging, exhausting, depressing, anxiety creating, nuts at times how hard it was to get him the services, therapies and public acceptance that he needed, and continues to need. Yes, much of what the demonic video voice said really did happen to us, at one point or another, as I’m sure it happens to many families with children that are on the spectrum.
Yes, it costs a fortune to get what you need. No, you can’t really hold down a full time job and advocate for a small child at the same time. Yes it’s hard on a marriage and family dynamics. Yes, the divorce rate for parents of children with autism is exceedingly high (but then again, isn’t the divorce rate for parents with neurotypical kids high too). Yes, it does make shopping, going to temple, participating in a siblings extra curriculars, etc. challenging, frustrating, difficult. At least it did to us. Gee, thanks for the memories.
But scaring people, or depressing them and point out how hard it is for them, or how hard it will be for them is NOT the inspirational message that I think these two fathers set out to achieve in the first place. And you can’t devote half the video to the bad and counterpoint it with some rah, rah fight stuff. By that time, you have just depressed the hell out of your audience and whose brain is ready to even hear anything after all that stuff?
Also, I still find it disconcerting how much emphasis is put on parents to “fight this thing” rather than emphasizing the amazing struggles children and adults make every day to learn to circumvent and overcome their challenges, through all this neat therapy that their folks have gotten for them — not only in the interest of “being all that they can be,” but in trying to find ways to fit in with us neurotypicals, to find friendship, love and acceptance. Damned. Somebody stand up and give the runners a hand, will you, and stop giving all the credit to the coaches!
Not to mention, if more time and money were spent on educating people (children and adults) in a way to not frighten or shame them, but to get them to be more accepting of others’ differences; to be kinder to their fellow man, then the folks on the spectrum, be it high or low, would have a heck of a lot less to worry about and deal with.
How many kids with asperger’s and HF autism are bullied in schools today? WHY are they bullied exactly? Because they are different. Why not spend some time and money dealing with those kids and make change at a younger level, so people can grow into adults who embrace neurodiversity? (Autism Speaks, are you listening?)
A video like this does nothing for that. This video is not meant to do that. Which leads me to my most difficult problem with the video:
Who is this for?
Is this for us parents, to pat us on the back and make us feel like “Yeah, aren’t we doing a lot for our kids?”
Is this video for the public out there who knows and understands nothing about what the autistic spectrum is, both high and low? Who doesn’t know about the challenges that kids with autism face every day (because kids are the main actors with autism in this show, aren’t they?). And by lumping in the whole spectrum together, are we really confusing the general public more about the issues people and families face?
Are the filmmakers trying to shame people into helping, doing the right thing?
If that’s the case, I really can’t see this working. Yes, you’ll get sympathy. Maybe. But sympathy is not acceptance. And wouldn’t that be a far greater gift or goal, to achieve an understanding and acceptance of challenges and also to achieve a great appreciation for people who are on the spectrum, for thinking differently.
But then, I guess it all boils down to the filmmakers treat autism as a disease, and in my mind, it’s just a part of who my son is. I love him just the way he is. And I’m proud of him beyond measure for the things he’s done and will continue to do.
And I hope when he grows up, he uses his many gifts of his brilliant, autistic mind to create a cure for true diseases like cancer… or alzheimer’s… or to find ways to help those with brain damage… (though if he grows up happy and becomes a saxophone player, that would be cool too).
And all the while, I will hope that when he grows up, he never comes across a video like this. Though, somehow I think the odds of that aren’t on my side.
Well, Arnold’s really done it this time. I’m sure you’ve all heard about the cuts Mr. “I’ll be Back” has made to regional center services, early start programs, children’s healthcare, respite and home aides and other changes that affect those with Autism spectrum disorders.
I have a hard time understanding how his wife, Maria Shriver can support his decisions to take away from those who have so very little, cut services and hope from children with autism so ruthlessly.
I’m sure those who voted for Arnold never thought he’d be capable of such atrocities… and if they did, I’ll bet many thought at least his wife could talk some sense into him if need be. But no such luck.
I’m sure there are many who’s live are not touched by autism, do not realize the devastating impact this will have on so many children and adults with disabilities. I chose to believe that the public is not uncaring about such things, but merely ignorant as to what it really means in the life of a family touched by a disability who depends on these services that have been hacked away (and with Arnold making fun of the whole thing by broadcasting on Twitter the budget and him brandishing a hunting knife… come on, how stupid was that? Does he no longer employ the services of a press agent or personal manager to advise him. Does he never expect to need the public on his side ever again? It’s all just too strange to believe).
And again, Maria, where are you in all this? Where are you period? You never struck me as the silent type and your family certainly never has been quiet when a voice so desperately needs to be heard.
Anyway, I digress. I’m upset and getting meloncholic.
What you need is to understand what exactly the cuts are and how it will affect you.
For this, I’m sending you to Area Board 10 (WE LOVE YOU AREA BOARD!)
For those in Los Angeles County, Chris, Roberta and the others at Area board are amongst the hardest working folks in the autism advocacy world. They advocate for our kids, our families tirelessly. Underpaid, overworked… they have the biggest hearts I’ve seen and the sharpest minds to match. If you have questions, give them a call. Be patient, it might take them a while to get to you, they don’t have a huge staff… but the wait is worth it.
Without further a do, read what went down on their website…
It’s really wonderful. You’ve got to check it out. And I’m really also impressed by the new PSA No Myths, about how autistic people aren’t just something to be cured. Finally some positive messages. Thanks to the autism self advocacy network and the Dan Marino Foundation.
I hope everyone checks these videos out and spread the word.
And remember, you can get your “celebrate neurodiversity” shirts and other “get real” embrace our differences messages for all people at www.autisticgenius.com
We should be aware EVERY month, not just in April.
Today’s “economist” has an excellent article on new studies that link autism to genius and/or savant abilities. Worth reading, despite the Rainman photo and reliance on savantism instead of the differences in the autistic brain that have a high number of true “genius” IQ’s or talents that go with the diagnosis (again, not saying everyone, obviously… but there are many of those historically we would call “genius” in their respected fields who were, in fact, on the spectrum).
“THAT genius is unusual goes without saying. But is it so unusual that it requires the brains of those that possess it to be unusual in others ways, too? A link between artistic genius on the one hand and schizophrenia and manic-depression on the other, is widely debated. However another link, between savant syndrome and autism, is well established. ”
Hypersensitivity, attention to detail, hyperfocus, pattern thinking and the ability to think differently are all sited as findings that make one an expert in any field. Doesn’t seem new and groundbreaking to me, particularly, but any positive and/or observant take on those on the spectrum is hopefull in my eyes.
“Many, but not all. Dr Happé has drawn on a study of almost 13,000 individual twins to show that childhood talent in fields such as music and art is often associated with RRBIs, even in those who are not diagnosed as classically autistic. She speculates that the abilities of savants in areas that neurotypicals tend to find pointless or boring may result from an ability to see differences where a neurotypical would see only similarities…
Simon Baron-Cohen, a doyen of the field who works at Cambridge University, draws similar conclusions. He suggests the secret of becoming a savant is “hyper-systematising and hyper-attention to detail”. But he adds sensory hypersensitivity to the list.”
When they get into conversations about experiments with neurotypicals to make them more like those on the spectrum by using magnetic field… they kind of lose me there.
“Dr Snyder argues that savant skills are latent in everyone, but that access to them is inhibited in non-savants by other neurological processes. He is able to remove this inhibition using a technique called repetitive transcranial magnetic stimulation.”
Yeah, uhm these people can’t seem to make up their minds between “curing” autism and snagging the genius label to neurotypicals by mimicking savent skills. You can’t have it both ways, guys.
The conclusion of the article, however, is hopeful:
“Savant syndrome, then, is a case where the politically correct euphemism “differently abled” has real meaning. The conclusion that should be drawn, perhaps, is not that neurotypicals should attempt to ape savants, but that savants—even those who are not geniuses—should be welcomed for what they are, and found a more honoured place in society.”
However, the words savant and autism are not synonimous, as the article seems a bit confused with.
I would’ve liked to see a more well thought out article detailing these studies and contrasting a large variety of examples both historically and those from recent testing… but perhaps because this is, after all, autism awareness month, that they felt under the gun to give us something to talk about.
By the way, if you want to make a statement with humor, I suggested getting my “I’m with Neurotypical” and “Neurotypical” tshirts, great for couples. Nothing says romance like one of these babies.
We have new designs added to the autistic genius store in honor of Autism Awareness month. We also have a new Autistic Genius Myspace page come visit, we could always use more friends who also want to support awareness, education and neurodiversity.
Of course, we think that EVERY month is autism awareness month, but we celebrate any reason to get the word out about Autism.
Since summer’s upon us, I’ll be posting soon about the best recreational and summer ideas for children who are on the spectrum. Stay tuned.
– like a guide for taxes for those with autism or disabilities, as well as parents of children with autism;
–there’s some very interesting info and sample behavior plans that you can download before heading into an IEP;
–For those with legal battles in the schools, there are free and reduced cost attorney and advocate lists;
–and my favorite, Dr. Tony Attwood answered viewer email on a terrific Asperger’s site… I love Dr. Tony… his book The Complete Guide to Asperger’s Syndrome
is really helpful and written in a very practical, honest, helpful way.
–and my dear friend, Corrine Morgan’s new book, Miracle Run: Watching My Autistic Sons Grow Up?-and Take Their First StepsInto Adulthood
is finally out! For those of you who have seen theLifetime Movie, The Miracle Run based on Corrine’s life story raising her twin boys with autism, which starred Mary-Louis Parker, Aidann Quinn and pre-High School Musical’s Zac Ephron, you’ll want to find out what Corrine and the boys are up to now that they are 25! Corrine is so witty, ensightful and one of the kindest, warmest, most passionate people I know who has fought long and hard for so many years to get folks who know nothing about autism to stand and take notice and help those who either have it or parents and family members who struggle in advocating for the rights of their children. I’m sure you all want to find out what happened after the movie, so get the book!
And finally, I just created a new t-shirt design that looks particularly trendy and smashing… check out my Autism Tattoo Heart Advocate T-Shirts, sweatshirts and bags, a wide variety of styles of the design for Women, Men and Children.
At my store Autistic Genius, you’ll find one of a kind pro-neurodiversity, autism and aspie humor t-shirts, sweatshirts, stickers, gifts and gear for the neurodiverse and neurotypical.
I’ve moved the Autistic Genius Blog to my own server. I’m still learning and trying to iron out the kinks, so hang in there… I’m not as good at this stuff as my kid is.
I hope that by putting this on the autistic genius server, I’ll post more… I know I’ve been sporadic in the past but I mean well. I often find a lot of interesting articles and info that I’d like to share with all of you and instead of updating the website all the time, it seems this will be the best place to do it.
. With a foreward by Tony Attwood, I’m thinking it must be interesting reading.
