Also, your entire eloquence discussion leaves out the part that some of us—e.g. autistic savant artist types like myself, are non-verbal in paper print, telephone, & most in-person formats, while eloquent only in an Internet computer format. You can’t base an entire advocacy discourse predicated on a wrong assumption that does not specifically account for the mode of Autism communication and how the mode can change whether the person is “HFA” vs. non-verbal—the mode changes the Autism ability level like a chameleon changes color.

An autistic savant such as myself—and many people with Autism who are ASSUMED not to be able to think of anything abstract—can in fact think; what we cannot do without Autism Internet computer accommdoations and removal of conventional communication modes, is EXPRESS the abstract thoughts we know. Never confuse the difference.

This is the approach that is the most fiscally and morally practical:

“Where treatments or therapies do not exist that can overcome the difficulties the individual faces, then should it not be society that adjusts and adapts so that those individuals have the care, the respect, the support, and the acceptance they need so that they can lead satisfying lives? Seriously. Some disabilities cannot be overcome with today’s science. Where it can’t, it is our obligation as a society to do better, to do more, and it sure as hell is our job as parents to do what we can to make the world a more accomodating place.”

At least in the U.S., it is also what the federal disability anti-discrimination laws require—unfunded federal mandates excepted from 2 U.S.C. Sec. 1503(a), meaning they must be funded by the states in the U.S.

And THIS is why any adult with Autism in the U.S. who insists on following the rule of law regarding Americans with Disabilities including Autism spectrum conditions, is met with THIS response:

“Now, for those who actively deny the existence of unreported adults, I find them to be extremely irresponsible. They would sacrifice possibly helping a large segment of the autistic community for their own political gain.”

Thats why, at least in the U.S. the rule of law under Title II of the ADA and Sec. 504 of the Rehabilitation Act of 1973, ENTITLES adults with Autism spectrum conditions—if “qualified individuals” with “disabilities” to THIS as a remedy:

“The funding would look like money…the research would look like people first finding the unidentified autistics and second finding out what needs they have that are not being supported.”

“And it’s all too easy for people whose kids are profoundly disabled to feel misrepresented by adults whose autism is clearly much less disabling.:

I understand this concern, and actually I share it with you. None of the Aspies I know of like Ari, Alex Plank, @4Aspie, John Robinson, etc. seem to have any idea or concept of the extreme difficulty more severely language and other disability impaired people with Autism battle with every day. This is a huge problem for me, because I have never been able to be understood by most people with conventional ways of communicating—I have to have paperless Internet computer, I people label me “diminished capacity” and other idiotic things because they don’t understand the barriers and my Autism needs. Also, I cannot do my own meals preparation, and this has been a lifelong issue—it is not about “teaching” me how; I cannot neurologically handle the performance of those tasks neurologically. I have many other very real neuro-physical issues. So I do share your concern about adult Aspie representation.

Regarding your statement & entire discussion on:

“I would be thrilled to tiny pieces to have a qualified expert in my life who could assess my son and say ‘ah ha! here’s a kid who would do best with A and X therapies, as opposed to B and Z therapies. Here’s where to find them, here’s how to pay for them, and here’s how to assess the quality of the therapists you interview.’”

My criticism is not what you are saying, but only the fact that you are not including adults with Autism in the group having the same identical problems. Only for us, it is far worse. We have no real access to doctors, which makes it worse. If we do manage to get a doctor for a short while, we have many of the same complaints you mention. And I do not think it is a legally justifiable excuse (at least in the U.S.) for our governments to have been informed about Autism by Kanner in 1943, and then just sat around neglecting the Autism spectrum so completely. THAT has harmed more people with Autism and families than probably Agent Orange, DES, Thalidomide, Atomic fallout, and the maladies of Desert Storm I.

It would be so much more helpful in creating unity in the U.S. Autism movement to kepp saying most of what you are saying, but expand your coverage of these topics to include the adults with Autism. And we are not just age 22 and under—there are many of us of all age spans.

With regard to this statement:

“Huh. My experience (granted it was ten years ago) was in essence a diagnosis and a handshake. There was no clinical advice, other than “he should probably be in a small classroom setting” (he was then three years old). No one mentioned ABA; no one mentioned floortime; no one mentioned any treatments at all outside of speech therapy, OT (handwriting) and PT (gross motor).”

I did not even get that much when I got my re-confirmed Autism DX. In fact, it appears the real reason my doctors abandoned me is BECAUSE of my Autism DX —they just don’t want to serve adults with Autism. That is also discrimination and violates the ADA. In my doctors case, Title II of the ADA, because they are a public university.

About the florescent buzzing lights—they can set off seizure activity in people with epilepsy and TLE syndomes that exist in at least 25 % of people with Autism. It may not even be a noticeable thing for someone with these problems, but for us, it can set of seizure activity, which is actually a form of physical assault on our sensory systems, and for those reasons violate the ADA. However, businesses are exempt from damage claims under Title III of the ADA and only subject to a forward looking injunction—to eliminate the inaccessible lights.

It is not as simple as that, however, since anyone who followed the Molski wheelchair access Title III ADA cases knows he coupled the Title II ADA claim with a second count for violation of California’s Unruh Act that DOES allow for money damages. In Florida, the same one-two lawsuit can be duplicated by a Title III claim, with a secind count for per se negligence based on violation of an ADA regulation or statute. In my own life, I usually don’t quibble with businesses, other than try to persuade them to just fix the access problem—there are many competitors. Government access is a different matter, because they handle entitlement benefits people with Autism depend on.

Billy, I think it also needs to be mentioned regarding “disability” as defined in the U.S. under the Americans With Disabilities Act, your comment below makes no sense and seems ignorant of the legal defition—which answers the entire question.

“Nobody should really just say autism is a disability, since there are some on the spectrum who really aren’t disabled.”

A “qualified individual with a disability” is one who is “substantially limited in one or more major life activities,” when looking at the nature, manner/conditions under which it is performed, and duration.

That legal definition pretty much excludes Aspies who have no real problems fitting into the “normal” World, and includes those on the Autism spectrum who meet the definition.

In that sense, while I am not certain of Ari’s ADA “protected status,” perhaps some of the other Aspies would not be a “qualified” individual with a “disability.” However, people with Autism and autistic savant such as myself with far more severe deficits would be included as a “qualified” individual with a “disability.”

It is such a conundrum—at least in the U.S.—that so many Autism advocates and critics untether their debate and discussion from the legal definition parameters.

All I requested was that you stick to the content of my actual posts. You failed to accurately potray my posts and failed to accurately address any corrections.

I’m at a loss to what you think my initial point was. Parents of autistic children are not the only ones who can advocate for autistic people on the local or national level, nor are they the only ones that have a say in what is appropriate, legal, ethical, beneficial or clinically indicated in regards to people with autism.

Due to the lack of appropriate content and apparent relevance of your previous responses, as well as your unreasonable demands and needless insults, any further response will be treated as irrelevant.

Toodles.

I’d agree with (b), but not with (a).

(A) was my assertion that most autistics are likely adults. This is supported by the recent study out of the UK showing a prevalence of about 1% in adults.

Is it definitely proven? No. But, to paraphrase Dr. Insel, it is up to those who disagree to prove their point. At this place in time, we either accept this as a good possibility or we risk ignoring a large segment of the autistic population.

Now, for those who actively deny the existence of unreported adults, I find them to be extremely irresponsible. They would sacrifice possibly helping a large segment of the autistic community for their own political gain.

I don’t know what such funding or research would look like, other than “greater services and supports”; and I don’t even really know what that would look like.

The funding would look like money…the research would look like people first finding the unidentified autistics and second finding out what needs they have that are not being supported.

Do you really think we’d be in a better place if that research had not been funded

Gotta call out the straw-man argument here. I am not saying it shouldn’t be funded. Never have. But, if it makes it easier to support what is an unsupportable point for you, feel free. “Re Focus”. How hard is it to understand that one can focus on one area without ignoring another? You are smarter than that.

Are the needs of adults totally ignored now, with the focus on causes and cures? No.

As to my “false analogy”, it appears that is one of the many points you misunderstand.

I’d agree with (b), but not with (a).

You can try to disagree with reality, but it’s still reality. Denial of the existence of autistic adults in large numbers (diagnosed and undiagnosed) is not only inconsistent with the data that is available, but it’s also most unhelpful in practical terms, both to autistic adults and to your own long-term interests.

I guess you conisder “steer away” the same as “refocus”. I don’t find the phrases equivalent.

Does either of them promote looking for a cause or a cure? If our measurable endpoint is applying resources towards causes and a cure, there isn’t much difference to my mind.

As for repasting, I just was too lazy to open another browser.

Let’s see, we can focus 95% of the funding on areas other than adults, or we can acknowledge the fact that (a) most autistics alive today are almost certainly adults and (b) most autistic children today will almost certainly become autistic adults.

I’d agree with (b), but not with (a). But even if I did agree with (a), you have no way of quantifying how much of our funding currently is going to “areas other than adults”, whatever that means. Maybe that’s my problem (or one of them), I don’t know what such funding or research would look like, other than “greater services and supports”; and I don’t even really know what that would look like.

So, if we could apply 95% of funding towards “practical outcomes for autistic people throughout the lifespan”, what would that look like? This is a genuine question, and the creation of a concise answer might actually be very useful in furthering meaningfull discussions.

What really bothers me about this idea, however, is the potential to lose progess in true advances. Consider the advances in reversing fragile x in animal models. This is exactly the kind of research that is part and parcel with funding for a cause and a cure. Do you really think we’d be in a better place if that research had not been funded, so that we could spend more resources trying to help adults with fragile x get more supports and services? This is precisely what will happen if people are successfull re-focusing our priorities; it is terrifying.

If people want to lobby for cures, go ahead. But history tells us that parents have been counting on a cure for decades—only to find that they didn’t prepare for their children to be adults.

Its a false analogy to compare what is happening now to what was happening decades ago for a variety of reasons.

– pD

“If people want to lobby for cures, go ahead. But history tells us that parents have been counting on a cure for decades—only to find that they didn’t prepare for their children to be adults.”

You are so right ! At this point, with Obama and Bernanke just having barely escaped a U.S. Depression and millions of American families losing their homes to the mortgage debacle and some of the ponzi schemes that have gone down (e.g. Madoff), now is simply NOT the time to be throwing good money after bad.

Its okay to ask for cures for those who want them, but these parents have no right to drag the U.S. and every American back down into Bankruptcy.

We need to be more sensible than that.

However,regarding THIS statement:

“Let’s see, we can focus 95% of the funding on areas other than adults, or we can acknowledge the fact that (a) most autistics alive today are almost certainly adults and (b) most autistic children today will almost certainly become autistic adults.”

... at least in the U.S., what the parents are asking for—to hog up ALL (100%) of the Autism funding and leave the adults with Autism with none, is patently unconstitutional and cannot happen. It would be taxation without representation on the adult Autism population to pay for the children with Autism. The funding has to be in proportion to Autism population age bracket groups, wherever the Bell Curve lies. You are saying most of the Autism population are adults. This would result in more of the Autism funding having to be allocated to the adult Autism population in the U.S. Not only do we have a U.S. constitution, but the U.S. is also signatory to and has ratified a number of human rights treaties.

The problem in the U.S. is we have no Census count of the adult Autism population. Although I agree with you about there being MANY more adults with Autism than children. The problem with finding them in the U.S. to count is:

(1.) up until (even in some states) appx. 1976, it was a crime that could get parents locked up in jail not to turn their children with Autism over to the institutions;
(2.) as a result, many parents in the U.S. hid their children with Autism from the authorities and just entered them in mainstream public schools to sink or swim;
(3.) additionally, the parents were having their jobs, careers, and professions ruined by a particulary pernicious form of McCarthyism by being called “Refrigerator Mothers,” so the hidden children with Autism had to remain “in the Closet” (as gays and lesbians like to say);
(3.) During first Gov./then Pres. Reagan, after Mr. Reagan watched “One Flew Over the Cuckoo’s Nest,” all the adults with Autism got dumped out of the institutions directly onto American streets with NO support or services and many unable to access the help that was there—resulting in HIGH numbers running afoul of criminal law violations and being warehoused in the jails, or going into chronic perpetual homelessness until they died and continue to die;
(4.) some Aspies and higher functioning Autistics and Autistic savants managed to hang on by sheer donkey-style planting their feet in the real World and actually surviving, though, for a very high number, not very well.

The U.K. is at least counting the adults with Autism and taking steps forward toward addressing their plight. The adults with Autism in the U.S. are all felling like we should be getting ready to move over to the U.K. if Ari and others cannot get the U.S. to count all the U.S. adults with Autism population and take the same steps forward toward addressing our plight.

The current parents who are duking it out with the adult Autism population to rob the U.S. adults with Autism of all funding by taxation without representation to hog it up are traveling down not only an unconstitutional path, but one that is fiscally unsound and would bankrupt America as a result of the increased costs it will ultimately cause due to inefficient misallocation of resources.

If the U.S. is headed toward difficulties handling its interest on the National Debt, one can only IMAGINE the nightmares when the current parents-misallocation formula careens U.S. interest payments to run amok rising out of control—while ENORMOUS roving bands of feral adults with Autism plague the Country similar to the bandits of Europe’s Dark Ages/ Medieval era following collapse of the Roman Empire (and our governments are unable to raise the funds for law enforcement to keep the Peace).

You are providing much insight, Sullivan. Thx !

Equiis

In the meantime He-Who-Doesn’t-Want-To-Be-Responded-To should NEVER write in that meandering, associational, tangent-style to any Court of Law, Judge, or Law Prof., because … THEY WON’T READ PAST THE FISRT FEW LINES. It helps to put the most important point first.

Also, He-Who-Doesn’t-Want-To-Be-Responded-To should make an effort to get over the unscholarly insecurities of attacking others while blocking debate for which He-Who’s coping mechanisms go on FAIL. Such tactics do not add value and worth to the debate.

On a more general note, I am an avid Internet commenter on several forums, have Twitter and FB, FB Fan page, and Autistic Savant website responsibilities, as well as law clerk. I am not so concerned with imposing some order on who said what, as much as what my comments and the comments of others contribute to my ability to advocate for adults with Autism in the U.S. I am a public figure, and have many people asking me every day about complicated issues that divide the U.S. Autism community and how we all might resolve them.