Posts Tagged ‘asd’

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

Teaching Social Skills to Children with HF Autism

Thursday, January 15th, 2009

Here’s a very interesting short program from NPR about teaching social skills to children with Asperger’s and HF Autism.

http://www.npr.org/templates/story/story.php?storyId=98959992