Thursday, January 7, 2016

Will Hillary Clinton's autism policy proposals fly?

A couple of days ago, the democratic party's leading contender, Hillary Clinton, announced a sweeping range of policy recommendations for autism spectrum disorders she says she'll attempt to implement if she's elected to the white house.  She apparently had a conference call with Ari Ne'eman and a variety of other people.  Interestingly enough, many of these recommendations reflect issues that Ne'eman's organization, ASAN, has tried to implement.  I'd like to touch upon some of them.

She recommends a study to assess autism prevalence in adults similar to what the CDC does for eight-year-old children every two years under the Autism and developmentally disabilities monitoring network which was passed when the CARES act was still the combating autism act.  The ADDM spends millions of dollars a year to produce these prevalence findings.  They track areas, just in specified areas of the country and not the entire country.  Why these specific areas are chosen is unclear.  Every two years they track different counties and cities within the same state and often change the geographical areas, so the prevalence figures have little value.  Also, it is unclear to Gadfly how the CDC prevalence monitoring helps any autistic children achieve better educational goals or occupational goals when they become adults.  How are all these people served by the millions that is spent on these prevalence studies?  The cost is particularly sensitive in that the majority of autistic can't work, can't get on disability and are either supported by their parents or live in abject poverty.   

The CDC searches special education schools and clinics where eight-year-old children are likely to present.  They won't have this luxury in adults which makes studying the adult prevalence so much more difficult.  Contrary to what the age of autism people and others who believe there's an autism epidemic that just happened in recent years in younger persons, this is the likely reason similar prevalence numbers haven't been found in older people.  Or perhaps she wants to do something like the Brugha study whose methodology was highly questionable.  It was based on a modified version of Baron-Cohen's autism quotient survey which turned out to be a poor screen for autism.  They then found only 19 people and on that made an "educated guess" that 1% of the entire adult British population had an autism spectrum disorder.  Not to mention the fact that this screening tool is only designed for higher functioning autistics and not ones who are nonverbal or have an intellectual disability.  Finding adult autism prevalence in adults is really like looking for a needle in a haystack.  I don't believe it is money well spent when many autistics live in poverty and there's a shortage of funding for general services that help parents care for their autistic children.

Hillary Clinton wants to help find jobs for autistic people vis a vis legislation such as the American Disabilities Act and transition plans and the demonstration programs for which legislation has already been introduced by some members of congress.  However, she neglects to mention how autistic people who are disabled by their condition would be amenable to be trained for various occupations to make them more employable.  Even if taxpayer or private money were available, how could it be implemented.  Most autistic people would have difficulty with schooling or learning a trade due to their disability.  Of course, Clinton takes a card out of Laurent Mottron's bag of tricks, claiming they have all these talents and abilities that will make them marketable to employers while neglecting to cite any references or proof.

The Americans with Disabilities act only requires employers to give Reasonable accommodations to disabled employees.  Tolerating tantruming, meltdowns and disruptive behavior that would occur at a job by a variety of autistic people are not reasonable accommodations.   in one case a medical resident stating that acceptance and understanding of his asperger's was a reasonable accommodation did not prevail in federal court.  As was  the case of a man with an ASD whose request for acceptance of his loud voice and asking customers personal questions. 

Hillary Clinton also wants to legislate bullying out of existence.  That's never going to happen.  There are always going to be kids who bully other kids.  It's a shame, but there's no easy and simplistic way you're going to be able to stop it.  Of course, I agree that rather than the autistic child being segregated from their peers because of bullying, that the bullies should be segregated and sent to a reform school where they're locked up for their misdeeds.  Of course, there's no more chance of that ever happening as there is of a cure for autism being found in my lifetime.  Of course Mrs. Clinton takes advice from ASAN, so I suppose she doesn't want to do anything about Clay Adams, Phil Gluyas, Marc Rosen, and other neurodiversity proponents who bully and harass and libel me over the internet.  How dare she listen to any suggestions from Ari Ne'eman who accepted membership dues and donations from these people who helped pay his $71,000 salary in 2013.  

Much to neurodiversity's chagrin, one of the things that Mrs. Clinton did recommend was continuing projects like Autism Speaks Mssng campaign to search for genes that might figure in the etiology of autism. 

However, she fails to give policy recommendations on many fronts.  What of autistic people who can't find mates?  What does Mrs. Clinton plan to do about that?  What about the fact that the vast majority of autistics who have a seriously compromised ability to work are denied disability.  If they get it at all, they have a protracted court battle that goes on for years.  Why won't she mention this? 

Worst of all, she neglected to mention one word about autism prevention or ultimately finding a cure for autism.  It would seem Mrs. Clinton is another politician who unfortunately has been influenced by neurodiversity advocates. 

Autism is not a political or legislative problem.  It is a developmental disability.  We need scientific funding and not politics to help solve the problems of autism. 

Will Mrs. Clinton's policy recommendations fly?  Gadfly doesn't think so. 

12 comments:

Jake Crosby said...

Of course Hillary takes advice from Ari Ne'eman, they're both political animals. How could she claim to legislate bullying out of existence when she lied to Benghazi victims' relatives that their loved ones died over a YouTube video? How could Ari claim to do the same when he has opposed measures that could directly keep disabled people out of danger while his followers troll the internet hurling abuse at his critics? The hypocrisy of people like them is mind-boggling, not that a whole lot surprises me anymore.

Willie said...

I agree why are they listening to that Ne'eman guy?! I have real Asperger's and a genetic disorder that can be LIFE THREATENING (NF1) and what I need is affordable housing and supportive employment services these have long wait list why doesn't Hillary address this and also reopening developmental institutions for the extremely handicap their parents cannot care for the forever and the group home staff is not properly trained?! Start an independent advocacy group away from Ne'eman and go from there as a first step. There are a few points I agree with the ASAN they want more prosecution of those that murder their child with autism and oppose the taking away of gun right of non severely disabled persons.

spinoff said...

Hi Jonathan, as a parent of a severely afected younster I cannot view this dispute but with sadnees. I do think that the neurodiverse do idealize autism in various ways one of which seems to be that they cam bully others as a right as they seem to do to you. But on the other hand, the truth is that years and years of research have led nowhere in the area of decent treatments and I take that they oppose the use of ABA indiscriminately and of antipsychotics routinely. I have seen fatalities due to the later and exclusions and fear of repraisals in parents due to the failure of the former. ¿Is there a movement, or blog or association of parents for the acceptance of autism, to defend their rights to adaptations, supports,etc and ours to respite care?
When "rights are mentioned it ends up with the rights as they are interpreted by professionals that is their rights. You are corerrect in reflecting the difficulties and even the suffering of autistic people, they are correct in stating that there is not a treatmnent worth that name and if you look at researc in Psychiatry the treatmnt is often worse that de "disease" and there is no inkling that iit is going to be otherwise. You both deny an aspect of reality. You need bridges.

P.S. Do you know if it is possible to get the results of the 25 years follow up of the Lovaas study?

jonathan said...

@spinoff, I know of no such organizations or websites or blogs like that for parents.

If you're talking about adultoutcomes of the 1987 Lovaas' study, none were ever published. They received grants to follow the kids into adulthood and did an informal conference presentation but never published it in a peer reviewed journal. Either the adult outcomes were poor so they decided not to publish or their work never passed peer review for some reason.

I asked Tristam Smith who studied under Lovaas and gave the conference presentation and he sent me a power point file about it which really had nothing of value on it, just the outline of the talking points of the conference. He claimed there were logistical reasons they could not publish the adult outcomes whatever that means. I think they wrote a bit about a few of the kids as adults in a book chapter. These were only people in the treatment group and none of the controls. That's all I know about it. I suppose you could email Tristam Smith about that, don't have his email address handy.

Anonymous said...

" Why won't she mention this? "

She's not going to have time to mention absolutely every last pressing issue in the country during her campaign, and she's not a momomaniac focused on absolutely nothing but *your* diagnosis.

spinoff said...


Muchísimas Gracias Jonathan, that helps.

jonathan said...

De nada

cubeangel said...

Jonathan

I read the court case for the sacker here at http://law.justia.com/cases/federal/district-courts/FSupp/946/937/2097008/ that you posted.

For those who claim disability with SSDI and the SSA here is my question under this logic of the case by this judge then how can any person ever be qualified for anything? How can voc rehab help anyone who claimed and was successfully awarded SSDI find a job at all?

Court cases set precedent and what this court cases says is that no person who is currently on SSDI can ever be qualified for anything and can't use the disabilities act at all. How would Voc Rehab or any other job placement organization be able to assist anyone who is on SSDI whatsoever?

Am I misunderstanding something here?

jonathan said...

cubed: People are only eligible for SSI or SSDI if they can't perform "substantial and gainful employment" (which I think is defined as being able to earn $1100/month before taxes). People can also work part time in a low paying job making lets say $800 a month and still keep all or at least some of their disability benefits. Some disabilities aren't permanent the way autism is. For example, someone could injure their back in an automobile accident and not be able to work for a temporary period of time, get physical therapy and recover and then go back to work, but they lose their benefits if they can make $1100 month or more. There is nothing stopping someone on disability from being able to try to go back to work or being trained for a job, but once they do and make the minimum amount they no longer have their benefits.

If someone can't work at all, the ADA becomes moot as there is no reason for them to ask for reasonable accommodations. If someone can only work a limited amount and make less than the "substantial and gainful" amount, they can ask for reasonable accommodations under the americans with disabilities act. But allowing to shout or swear at customers or sexually accost them or being physically abusive to coworkers because they have a behavioral disability is not a reasonable accommodation in spite of what ari ne'eman and others say. This has been upheld in multiple federal court cases involving drug addicts, alcoholics, and more specifically some people with autism spectrum disorders. I hope that answers your question

cubeangel said...

Jonathan

Yes, I understand what you're saying and it does help to clear up misunderstandings I had about the court case and how it was written.

Concerning the ADA, what reasonable accommodations are is this. They're accommodations that enable one to meet the qualifications of a particular job or enable one to do the essential duties of the job. What a reasonable accommodation is not is this. A reasonable accommodations does not provide exemption from any of the qualifications for the job or any of the essential duties of the job.

A reasonable accommodation is one in which doesn't bankrupt the company either.

Part of the essential duties or qualifications of particular jobs is to show a certain amount of respect and politeness and this includes being polite, not abusing or not shouting.

A reasonable accommodation may be this. Maybe every hour on the hour in order to make sure one doesn't shout one has to go to the restroom and pinch himself on the side of the neck for a few seconds or splash cold water on his face. This would enable one to meet the qualifications and doesn't bankrupt the company. Or, for the shouting aspect if there is a seminar or class that could help one learn to modulate one's voice and it costs $500.00 for the whole thing this could be a reasonable accommodation depending upon the company and one could work there on a trial period. This trial period ends when the class is over and the employee stays if he successfully completes it and it does work.

Am I at least on the right track on interpreting the ADA correctly and reasonable and unreasonable accommodations correctly?

jonathan said...

Cubed: I really don't know, but I don't think your suggestions are very realistic. Autism is far more complicated than that and just taking a course isn't really going to help. Most people with autism aren't going to have $500.00 to pay for a class like that anyhow and I doubt requiring the employer to foot the bill would be a reasonable accommodation and I don't think there are courses like that which help autistic people anyhow.

There's a jobs accommodation network website that has suggested some similar (but not identical) things, such as giving someone a squeeze ball to dispel nervous energy to avoid stims and breakdowns, but I don't think the people who wrote that website have a good understanding of theproblems associated with autism or the problems they'd likely face in any employment situation.

......I'm Anonymous said...

Jonathan,

I was the one that alerted you to this failed follow up below. I'm glad you contacted Tristan Smith about it. I was not aware you had. Lovaas was a fraud and unfortunately, has never been exposed as such.

As far as Jake Crosby, him railing against fraud is the ultimate irony. He's made a "career" pushing fraudulent claims of the anti-vaxxers. Claiming to be autistic while attending a prestigous university and pushing the Age of Autism nonsense is simply disgusting. He needs to crawl back into the hole he came out of.

"If you're talking about adultoutcomes of the 1987 Lovaas' study, none were ever published. They received grants to follow the kids into adulthood and did an informal conference presentation but never published it in a peer reviewed journal. Either the adult outcomes were poor so they decided not to publish or their work never passed peer review for some reason.

I asked Tristam Smith who studied under Lovaas and gave the conference presentation and he sent me a power point file about it which really had nothing of value on it, just the outline of the talking points of the conference. He claimed there were logistical reasons they could not publish the adult outcomes whatever that means. I think they wrote a bit about a few of the kids as adults in a book chapter. These were only people in the treatment group and none of the controls. That's all I know about it. I suppose you could email Tristam Smith about that, don't have his email address handy."