Just re-read my (first) question, and I confused myself in reading. Let me rephrase: a current diagnosis of autism has everything to do with symptoms and nothing to do with cause. If you were doing a scientific survey of adults with autism symptoms, except for the rare ones with well-documented medical histories, how would you ever tell if the symptoms stemmed from something they were born with, that happened early in life, or that happened later in life?

I started the process last year to get SSI for my son. He was denied twice. They even required us to get a psyc evaulation. We got a copy of it after I called several places. I noticed his IQ was a lot lower than it was when taken in the eigth grade. I guess he lost 20 points due to untreated epilepsy, I could have just died! The third try I hired a lawyer in Dec of 2008 it has been seven months and I have heard from neither the lawyer or the government. Maybe my son could make it without SSI? I doubt it. I don't know if I am doing right or not.

SSI is not guaranteed just because you have a permanent disability. The disability must prevent you from doing ANY kind of work where you could actually earn a meager living.

I began recieving SSI as a kid and still get it (I'm 21). I've gone to Voc Rehab and have TRIED to work, but I can't. I WISH I could, though.

Many people with HFA/AS CAN work, they just choose to be lazy. They get SSI and then don't get ANY help. I have a problem with that.

I understand lack of services, there is over a year waiting list to even be evaluated where I live, but I have done everything I can think of to get help and I think I have FINALLY found someone to help me.

And I also do have a job, sort of. I am an artist but I make very little money; I'm not simply sitting around doing nothing.

I think AS is real, it is just GROSSLY overdiagnosed. I fault the doctors who do not follow the criteria and diagnose every intelligent, eccentric person with a hobby with AS.

Benandcoopersdad,

We are really talking about low functioning adults with autism, those who have a similar history of regression to the severely effected children seen in the current epidemic.

I'm familiar with functional adults who've been diagnosed at 25, 30 or even older with some "shadow" form of autism or with bipolar disorder or other faddish dx. Most were individuals who, either from their teens or as adults, fell prey to the practice of "polypharmacy"-- the totally untherapeutic practice of drugging an individual with multiple psychiatric drugs (drugging side effects of one drug and on and on). This practice exploded in the generation I grew up in.

Some of these people I've known since childhood and I can attest that they never had autism, bipolar disorder, etc., not even aspergers, and were initially drugged for inattention or depression usually stemming from family problems, excessive teen drinking, sometimes giftedness or some cultural ill-fittingness. The decades of drugging create certain personality changes; robotic behavior, social withdrawal, physical clumsiness, sensory disturbances, tics, periods of mania, public meltdowns, OCD's, etc. These things are all in the literature as potential drug side effects and many killed-animal studies on drug-induced brain damage show that several classes of drugs have overlapping types of brain damage with vaccine toxins. It's not enough of an overlap that the drugs could serve as an alternate explanation for the childhood autism epidemic but there are certainly some toxic similarities.

As their dependence on the drugs increases, some people went through the typical economic downslide into financial dependence and some began to retroactively alter their histories to justify their continued drug-taking and deflect judgment for their inability to support themselves. For the people I knew personally, the way they're altering their histories to fit their diagnoses are pretty obvious. When I hear the same rhetoric from people I don't know, I have to wonder if there isn't a parallel epidemic of drug-damaged adults wandering around unable to perceive what happened to them and searching around in modern psychiatry for an explanation. And typical psychiatrists are all too happy to try to fill in that missing "cohort of autistic adults". It's a dx mill and incredibly profitable, since autism is a highly "druggable disorder".

There was one particular shrink who seemed to be treating half the people we knew in the town we grew up in. My now-78-year-old art professor, after his drug-dependent daughter convinced him he had something wrong with him after a prostate cancer scare, ended up going to this shrink and eventually ended up with a dx of aspergers at the age of *63*, of course after the endless course of antidepressants, antipsychotics, sleep meds, stimulants and anticonvulsants began producing various side effects. It would take too long to explain why his dx is total crap but it is. The guy was just Dutch Jewish, went to Yale, lost most of his relatives in WWII. He was kind of taciturn but threw the biggest parties at the university, never lacked for friends but was just culturally different. To me, he was a typical displaced, gifted New Yorker/offspring of war survivors who would have never questioned himself on his home turf.

The majority of the people I knew to whom this happened were Jewish, interestingly enough, and I wondered if the fact that we were all living in a pretty stuffy German-Christian city had something to do with certain people feeling "different". Some are dead now-- suicides, accidents, all stemming from the drugs.

There's only one person diagnosed as an adult I know where we live now who was probably borderline all his life but the diagnosis-- the way it's typically doled out these days in any case-- didn't help him, merely created in him a perception of disability without guiding him to seek any health remedies that probably would have resolved the very faint traces of aspergers he has, which do *not* include perseverative speech, lack of eye contact, meltdowns, etc. The only hint he gives that he has similar health problems to our kids is his gait and chronic skin conditions. He's actually the only adult I've ever met for whom the dx may actually stem from childhood though it's so mild that he'd never heard the word until nearly age fifty. I know this person is not the only one out there of this description but I also know that he's rare and he, more than anyone, feels it.

To my mind, because the bulk of autism isn't genetic and is environmentally induced, if something *seems* like autism/HFA, it is autism, whatever the cause. What I've seen in some adults is a somewhat similar process of regression to what we've seen in our kids, although more gradual and far more subtle and in people who obviously had a more developed starting point.

So yes, there are more and more people out there getting diagnoses of autism as adults and some may even show a few of the quirks. But I suspect that, in some cases, the cause began at about the same time the autism epidemic in children began-- around 1987 to 1990, with the marketing of the first SSRIs and atypical antipsychotics. All the same, even with all the drug-damaged people out there, psychiatry is never going to be able to "find" or create that "missing adult cohort". There's not enough people out there who buy into the whole "master race/Einstein had aspergers" mythology to sell the dx to people who went their whole lives without it.

The numbers for ASD collecting SSI are growing....more info on collecting........

WHO IS ELIGIBLE FOR SSI ?

Anyone who is:

disabled.

WHAT DOES "DISABLED" MEAN FOR A CHILD?

An individual under age 18 is "disabled" if he or she has a medically determinable physical or mental impairment, which:

results in marked and severe functional limitations; and

can be expected to result in death; or

has lasted or can be expected to last for a continuous period of not less than 12 months.

If the individual is age 18 or older, the adult definition of disability explained below applies.

http://www.socialsecurity.gov/ssi/text-eligibility-ussi.htm

Cate,
You said:

"Not being able to talk, flapping, spinning, diarrhea, constipation,and screaming are not "learn and grow and improve" behaviors. They are physical manifestations of what autism is in most children, which includes GI damage, mitochondria damage,immune system damage, microglia activation, ...INFLAMMATION...the downstream effects of injury by vaccines (ie-thimerosal,live viruses) and/or environmental toxins..ie mercury.

It seems to me that not being able to talk, flapping, spinning, and screaming *are* behavioral issues -- or at the very least, could correctly be called behaviors.

From discussions with autistic adults on various groups and forums, my understanding is that for these people, spinning or flapping or screaming is a stress reaction -- in part, I am sure, the stress of having extremely unpleasant digestive and other health issues. I absolutely agree that if a child is having diarrhea or constipation this is a medical issue and should be treated as one.

It appears that autism is likely a combination of issues -- some of which will go away as a child matures and is better able to cope with living autistic -- and other issues which won't.

Also, Kim:

I didn't mean to imply that autism "cures itself." Again, however, based on communicating with adult autistics online (some who *were* regressive around age 2, and who suffered and continue to suffer from all kinds of issues, including digestive problems), that over time people learn to cope with being autistic and begin to *appear* "cured." Not that they are actually "all better" or anything like that -- just that as adults they are able to "fake it" in public, and go back to hand-flapping or spinning or whatever in the privacy of their own homes.

Also, I am sure that some people will change more than others. It's terrible that there isn't more research being done on *all* the different theories surrounding autism, both causes and "cures," so that any individual who is obviously suffering can get the help he or she needs, whatever that might be.

benandcoopersdad, I agree it would be difficult and very costly to track down all cases, esp milder ones that are functioning well, aspergers etc. But it should not be at all difficult to track down moderate and severe cases. Yes it may take a while and cost money, but still peanuts much compared to how much is squandered on useless research every year.

Dr. Baron-Cohen--

You once obtusely called John Stone "categorical". I'm going to assume this is a good thing, i.e., that he speaks out of one side of his mouth. While you engage us in "dialogue" here, your work is yet again being used as a stick to beat Dr. Wakefield and parents of injured children:
http://www.forbes.com/forbes/2009/0622/simon-baron-cohen-autism-ideas-opinions.html

If you're truly sincere in the claims you're making to the readership at this blog, a more meaningful gesture would be if you rang up Forbes and clarified a bit. You might have difficulty convincing them that you're not "categorically" against further vaccine safety research though, because you made essentially the same accusations against Dr. Wakefield in your New Scientist Article. So, while you're at it, you could make a public apology to Wakefield et al. for omitting the fact that uptake of the MMR dropped in the U.K. because, after the Lancet paper was published, parents attempted to turn to the single shots for mumps, measles and rubella only to see the British vaccine authority swiftly yank the single forms, a gesture which then led to this endlessly drummed-about plummet in uptake.

If you're not simply a disaster capitalist and a propagandist, then don't capitalize or propagandize. Otherwise your calls for more services are simply cheap and empty rhetoric.

By coincidence, Baron-Cohen's name came up in a new book....THE HORSE BOY
http://www.squidoo.com/horseboymovie by Rupert Isaacson. This is the story of a father who used horses to recover his autistic son. ....It's interesting that Baron-Cohen has maintained a position of no real increase without having to show any evidence to support his views.

If it's just better diagnosing, then where's the decrease in the rate of other disorders? And where are the adults with autism?
The truth is ....There is nothing to support his assertions. Here's what Isaacson wrote,

Page 344-345....

"Just before we left England for home, Kristin and I traveled up to Cambridge to interview Dr. Simon Baron-Cohen, probably England's leading autism expert. I didn't agree with all his theories; for example, he felt that the current pandemic of autism was the result of increased diagnosis, not of environmental pollution, as many other scientists think. Kristin, ...pointed out that if the increase diagnosis were in fact the cause, then surely one would see a decrease in diagnosis of other types of mental conditions that might previously have been considered autistic. They agreed to disagree."

Anne Dachel

It seems like Prof. Simon Baron Cohen is starting to change his position on this...just a matter of time they'll stop denying.

I think the reason we don't see a lot of adults with autism the way you describe it -- "Adults who don't talk. Adults who bang holes in walls and who wear diapers. Ones who flap their hands all day and spin in circles for hours. Ones who scream and have terrible diarrhea and constipation." -- is because children with autism, just like any children, learn and grow and improve -- they probably don't present the same at 30 as they did at 3.

Maurine
the UK education system is a breaking point with special needs kids. We were advised (by a professional) that our application for a statement of special education would not be likely to be accepted because our child "had all his limbs"!

PS Prof Baron-Cohen, the evidence for vaccines being implicated in autism from Japan is very consistent and I have drawn your attention to it:

http://childhealthsafety.wordpress.com/2009/06/03/japvaxautism/

The evidence of parents is consistent, so why have you spent the last 20 years ignoring it?

I don't need anymore research into the causes of autism. My son (born in 1999) was injected with a very toxic substance called thimerosal on the day he was born, at two weeks, at two months, at six months, at eight months, etc. He has all symptoms of mercury poisoning which is now being called autism.

Anybody see Dr. Geier's presentation at Autism One, the CDC KNOWS. Their own studies prove it. They know and are just trying to confuse and delay. My only question is - did they do this on purpose or was this really an accident?

(mark h)...enough debate, enough thinking differently, enough golden age, enough not enough mathematicians, enough transporters DVDs enough looking for adults, Just STAND UP and say on the BBC . "WE NEED UK AUTISM RESEARCH INTO THE ENVIRONMENTAL TRIGGERS NOW"

Yes please. No! don't say it, shout it!!!

And in the same breath shout that we need to research children who recover from autism (phrase it however you like, if you feel recovery is a dirty word, use something mild, whatever). That we need to find out exactly what makes those individuals lose their symptoms of autism and function better, so that we can apply that knowledge and offer interventions to others.

ONLY THEN will you start making real difference.

Anne- thanks for sharing Dr. Baron-Cohen's expanded comments. Too bad he didn't include these nuggets of wisdom into his original work. Why didn't he make these comments or ask these important questions?

He does believe there is a huge increase? Amazing. He does think regressive autism should be studied? Enlightening. he has no vested interest in denying vaccines role and he remains open to any causes. Wow.

When we get our proof. It's going to be too late. I have been reading comments on a message board for my state. People are talking about wanting (needing) to give up their kids with autism and send them somewhere else to live. To find someone else to care for them - because they are aggressive and out of control and they can't manage them and they hurt their siblings or the parents themselves.

One single mom who has filed bankruptcy, and has no car to get anywhere, has been kicked out of a couple apartment buildings because of her son's behavior. She is now trying to decide if she should hand her kid over to whomever would take her child. He's 11 years old. Eleven.

We were all discussing how most of us don't even have any kind of waivers for our kids and no chance of getting them or any kind of real help anytime soon- if ever.

And of course the state is broke and the won't be opening up any additional waiver slots soon.

The state is talking about starting a new waiver to be activated in 2010. It'll be based on a lottery system for behavioral challenged children under the age of 14 and not even exclusive to autism. It's for up to $20,000 a year (not much) and there will only be 100 slots. I heard a few years ago there were 16,000 people with autism waiting for waivers in my state.

Once the proof is in- we'll already know we are screwed.

What will Baron Cohen be saying then?