Posts Tagged ‘aspergers syndrome’

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

Hello world!

Wednesday, December 10th, 2008

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 that in mind, onward.