"What Happens When They Grow Up"

[bloom]

Newsweek article.

...Autism is now estimated to affect from one in 500 to one in 166 children—or as many as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially awkward math whizzes to teens who aren't toilet trained—but who all fit on what scientists now consider a spectrum of autism disorders.

The culmination of much of this parental activism is the Combating Autism Act, which was pushed by a collection of advocacy groups like Cure Autism Now, led by Hollywood producer Jon Shestack and his wife, Portia Iverson; Autism Speaks, started by Bob Wright, CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for Pediatric Oncology. The bill unanimously passed the U.S. Senate in August but was blocked in the House by Texas Republican Joe Barton, chair of the House Committee on Energy and Commerce. In a September meeting, Barton told autism activists that he would continue to oppose their legislation, which earmarks $945 million for research over the next five years, because it conflicted with his own proposal to reform the National Institutes of Health. As a result, autism advocates began inundating him with faxes and phone calls and lambasting him in the press. To advance the cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among other things, "a lying, fat little skunk from Texas."

Now that the Democrats have won the House, Barton will lose his chairmanship in January and NEWSWEEK has learned that he is attempting to pass a compromise version of the bill before then. If passed, the House bill would fund a new push for early diagnosis, which is critical to starting therapy as soon as possible....

The House bill authorizes money for research into many questions, including whether environmental factors may trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research the role environmental factors might play in causing autism. But Barton resisted, and now the specificity about how much should be spent and where has been lost in the compromise version. Still, a Barton bill could come up for a vote as early as the first week in December...

...Grossman's early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill shouldn't try to take on too much. In this light, restraint seems especially critical now, when the Iraq war has siphoned off so much federal money. "It's like a forest fire running through science and it burns a lot of trees down," says Dan Geschwind, a UCLA neurogeneticist. However, advocacy groups vow that the moment the bill passes, government funding for adult services will become their next priority. Wright believes there is substantial congressional support for this, possibly from Sen. Hillary Clinton.

http://www.msnbc.msn.com/id/15792805/site/newsweek/from/ET/

Congress passes first-ever autism bill
Families hail legislation that could provide nearly $1 billion for research

The $945 million dollar "Combating Autism Act" is the first bill to address autism, and could provide research funding over the next five years. The focus? Everything from early diagnosis, to breakthrough treatments, to possible environmental factors that may cause autism.

http://www.msnbc.msn.com/id/16097274/

[hunter]

1. I don't like single issue health legislation...

Breast cancer, Autism, etc...

It compartmentalizes problems that are of a much wider scope, and leaves more holes in the "safety net" to fall through for people who don't fit within some narrow definition of a health problem.

The first thing we NEED to do in this nation is to recognize that mental illness, even those mental illnesses that lead to things like drug addiction and alcoholism, are health problems, and not something that is the result of demonic possession, immorality, or whatever fucked up superstition society is harboring at the moment.

The most urgent legislation that we need to pass is UNIVERSAL HEALTH CARE that also includes robust research programs, subsidized education for health care workers, and generous mental health care benefits. Such a system would cost much less than the economic disaster we are currently feeding.

[bloom]

2. I agree that we need comprehensive UNIVERSAL HEALTH CARE

But it seems to me that having a push for funding research and all can only be a good thing.


Key provisions of the bill include:

• Developing and implementing a strategic plan for research related to autism spectrum disorders;

• Reauthorizing Autism Centers of Excellence and providing funds to the centers for coordination of services and information for patients;

• Supporting basic and clinical research into the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, endocrinology, gastroenterology, psychopharmacology, and toxicology;

• Improving coordination of the various federal, State, and local supports and services available to persons with autism and families affected by autism;

• Increasing the number of providers that can screen, diagnosis and provide interventions to persons with autism; and,

• Promoting research to determine evidence-based best practices for diagnosis, early detection, prevention, intervention and possible/potential cure for autism spectrum disorders.

(from The Autism Society of America (ASA) www.autism-society.org/

http://www.autism-society.org/site/News2?JServSessionIdr011=4ttlw1f2v1.app25a&page=NewsArticle&id=9173&news_iv_ctrl=-1

[Aspy in Bend]

3. wondering

I applaud the money that has been allocated for Autism research, but I do wonder how much of that money will disappear in bureaucracy and administration? From what you listed, it seems that quite a percentage will be used to 'keep track' of things, instead of actually benefiting the people who can use it. Just a thought, and this does not reflect on this Autism bill at all, it is a problem related to government in general.

[bloom]

4. I hadn't really been following this all that closely.

The first article talks more about the service-related issues that were not included in this - the compromise bill.

"Grossman's early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues"


It is somewhat like a funding bill for researchers and providers and less for direct help. Like more people would be diagnosed - but then what? I don't know.

[Deja Q]

9. Autism and Asperger's are not illnesses. They are pervasive,

all-encompassing.

I wish it was an illness because I'd love a cure.

That's all I can say for the time being. It's ironic that a person who misinterprets so many feelings so much has feelings too. :D

[tavalon]

10. What you said...

That said, I'll take whatever scraps are thrown our way in the meantime.

[KamaAina]

5. I just presented with two of the people quoted in the article

Dan Geschwind and Portia Iversen (Newsweek screwed it up just like the conference did with her placard), at a Social Issues Roundtable at the recent Society for Neuroscience conference in Atlanta. I really do need to give Dan some props for one of the sweetest Bush**-bashing quotes I've heard outside DU!

I do rather object to the title "Combating Autism Act"; it makes us sound like we're al-Qaeda or something :eyes: but, if that's what it takes to get more money into the field...

As for "the dire needs of autistic adults" (oh yes, I've met Lee Grossman, too: his ex-wife is the head of the Autism Society of Hawai'i!), at the moment, my direst need is for less crowded city buses; they make me yearn for the relative peace and quiet of the NYC subway! I do understand that I am something of a statistical outlier in that respect; what I do not understand, and have wondered about for years, is exactly what it is that separates my independent-living, high-$30's-making, conference-presenting self from so many others who have a similar condition and yet languish in group homes and condescending "day hab" programs. Once I figure that out, my next presentation will be to the Nobel committee in Stockholm, I guess :-) One of the panelists in Atlanta referred to "the autisms" in an atempt to explain this disparity.

[bloom]

6. as far as

what separates your "conference-presenting self from so many others"

It's been interesting to me to think about this sort of question in light of my daughter and myself. (Actually, I think my husband might have it also).


I think that some of it is obviously due to the fact that people are different. People experience differing amounts of stress and other things. Some people grow up with better models of socializing than others - have different experiences.

I have managed to make presentations - and for me it has helped greatly to be able to build up to it. This is the sort of thing that a good teacher could do. Have students present to smaller groups and have them build up to larger groups. The same could happen in some job situations.


And then for some people - being on the right anti-depressant can go a long way.


I was at a support group for parents of adult children with disabilities. Several of the parents were parents of adult children with Asperger's. Some were happy that their child had gotten a job at something like being a dishwasher. And for some people they are doing well to have any sort of job.

I think that there is much our society could do to help people specifically get into jobs that are jobs with livable wages - esp. those who may mostly have anxiety issues and such preventing them. Like they might have the skills or potential - it's just not being realized.

[Aspy in Bend]

7. languishing

Not implying that my situation can be generalized, but I considered myself to be a 'wandering soul' until I figured out what my special interest was. That sounds simplistic but once I decided to immerse myself in what I truly enjoy, instead of doing what I thought other people wanted me to do, it's like I finally awakened.

At first I was a little depressed with the realization that I did not make a REAL decision for myself until in my early 30's. Sure I live independently, I do my own shopping, buy my own clothes, drive a car, all the things other 'normal' people do. I lived my life trying to please other people (parents, siblings, friends, co-workers,...) and doing what I 'thought' they wanted me to do, including choosing the type of employment etc... Invariable I disappointed a lot of people and felt like a failure.

A lot of people, friends, and family thought I was crazy when I decided to pursue my 'special interest', but now, a decade later, I'm considered to be sort of an expert in the field here in my local area. This is not to brag, but to let you know that any AS person has the potential to make a living, if they only get the chance to immerse themselves in what their 'special interest' is.

If you're not familiar with Dr. Temple Grandin, it will give you a new perspective on what is possible when having Autism. Here's a link to her website. http://www.templegrandin.com/ I had the opportunity to meet her in person in the late 80's unrelated to Autism, as I was not even aware at that time that I had AS myself, but I did feel a kinship with her at that time. I just didn't know why.

[KamaAina]

8. Of course I'm familiar with Temple

I presented with her, too, in Connecticut in the mid-'90s. I do need to finish up "Animals in Translation" so I can get the copy back to its rightful owner, an NT who is a huge Temple fan!

[Demeter]

11. They Don't Grow Up, They Grow Older

and if you engage in intensive therapy for 20+ years, as I have, they grow a little more capable of compensating. But independent adulthood is not even imaginable for most.