Posts Tagged ‘autism awareness’

wearing blue for autism awareness day

Thursday, April 1st, 2010

Celebrate Neurodiversity

Celebrate Neurodiversity

Just a quick thought I’d put out there to the universe… am I the only one who really doesn’t get why we’re supposed to wear “blue” for autism awareness day?

To me, it seems like we’re promoting the branding of a company, not a cause. Autism Speaks is known for their blue puzzle piece… they have branded their “corporation” and they certainly don’t speak for all people with Autism, if you follow the discussions amongst those of us living with Autism in our families.

I’ve worked for big corporations before, and I know the power of branding. While I can appreciate the sentiment of getting the word out, spreading awareness about the autistic spectrum, I’m not sure what wearing blue has to do with it.

The goal of branding a cause with a color, is to show your support while perhaps getting a bit of education about the subject across too. In the case of the Autistic Spectrum, I would think that a really nice goal in addition to showing “awareness” would be to separate fact from fiction about those on the autistic spectrum. This would include how Autism is a SPECTRUM disorder, which means it looks very, very different on each person. You seen one person with autism, you’ve seen one person with autism… I’m sure you’ve heard that before.

The reality of a spectrum disorder is that folks with it display symptoms, characteristics, quirks… whatever you want to call it… that fall between being very high functioning and very low functioning. That is to say, on the HF autism end, like those with Asperger’s, you’ll find people who are very eloquent in their speech and thought process, highly intelligent and creative; who often have deficits when it comes to social awareness, social skills, social discourse and a higher sensitivity when it comes to anxiety, sensory issues and theory of mind. On the low end, there are those who cannot speak, those who cannot communicate in any fashion, cognition impairment. Then you’ve got everything and everyone in between… hence the term: spectrum disorder.

So, as far as I’ve always known, a rainbow is the perfect representation of the spectrum and a rainbow is the “branding” of the cause of autism. If we are supposed to be spreading awareness, why are we not wearing rainbows tomorrow?? What’s up with the blue?

I honestly do not understand why Autism Speaks is promoting their own brand over that of Autism.

So tomorrow, for what it’s worth.. I’m wearing every color in my closet… to support Neurodiversity!

what’s in a name

Tuesday, November 3rd, 2009

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.

The NY Times sums up the debate nicely, in this article .

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.

The Terminator Strikes Again

Saturday, August 1st, 2009

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…

http://www.areaboard10.org/index.asp

the link between autism and genius

Monday, April 20th, 2009

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.