Wednesday, July 8, 2009

Will Insurance reform legislation help autistics' social lives?

One of the hottest issues on the burner in regards to autism is health insurance reform. The heavily capitalized organization Autism Speaks has been in the forefront in this venture. Regular readers of gadfly have seen my previous post regarding health insurance reform in which claims were made that this would help autistic become "functioning adults" and the citing of the nearly 50% recovery rate reported in Lovaas(1987). This is in spite of the fact that Lovaas and company have been paid handsomely by their ability to use NIMH funding as a proverbial ATM machine and get funding to publish the adult outcomes of their subjects in a peer review journal and the fact that they have failed to do so. We also have the phony/baloney cost-benefit analysis presented by Jacobson et. al. claiming that the potential earnings of autistic kids and their ability to be kept off the dole will far exceed the costs of ABA. The informal presentations of the adult outcomes at a conference were presented as evidence. No matter they either did not pass peer review or the outcomes were actually less than stellar so they were not published. No matter the absurdity of Jacobson and company assuming that interest rates will remain constant for decades and an inflation rate of zero for decades in their extremely sophomoric analysis. Not to mention the fact this assumes the 40 hour a week regimen with aversives that have been outlawed in many jurisdictions, along with clinic based ABA, as opposed to the workshop based ABA that is often used involving less hours, and lesser trained personnel that are paid for at taxpayer expense under IDEA. Lovaas(1987) used the clinic based ABA with highly trained personnel and the 40 hour a week setup for the experimental treatment group.

I realize I am rehasing some old issues I have written about before but it relates to the latest abominable campaign by the petty propagandists who run the show at Autism Speaks. I have already written about the despicable dog and pony show put on by autism speaks in terms of trying to encourage employers to hire autistics, yet not employing a single person with autism in their organization not even as a minimum wage file clerk with a job coach.

Sigmund Freud said to love and to work are the cornerstones of our humanity. So, it should certainly not be surprising that autism speaks has filled in the second half of the equation trivializing the horror of this terrible disability that presents autistics from having not only being deprived of their humanity by often not being able to work, given the high unemployment rates for autistics and others who are disabled, but also claiming that their insurance reform crusade is some sort of easy quick fix to ensure that autistics will have friends if the treatments of choice are paid for with health insurance. The following video has recently been produced by autism speaks:



In this brief clip, we see a boy with autism who apparently received treatments that were covered by insurance being invited to play a game of soccer by a neurotypical child and being accepted. We see a second boy with autism, who did not have the insurance coverage enabling him to get help, being rejected by peers.



My question to Autism speaks is Where's the beef? I have ofcited the problems with Lovaas(1987) and the groundless claims that have been made for it. But Lovaas (1987) only deals with IQ score tests and the ability to complete a normal first grade and subjective impressions by school teachers as the dependent variables being studied. There is no empirical evidence that this treatment enabled autistic children to better able to make friends or acquire a boyfriend or girlfriend. How can speech therapy enable a person to acquire friends. I am a formally nonverbal autistic who recovered his speech, yet the recovery of my speech has not enabled me to have successful relationships with people. I remain largely friendless and celibate. I also underwent perceptual motor training in the 1960s which might be comparable to some of the occupational therapy that these insurance reform crusades are trying to get the insurance companies to cough up the payment for. Not only were these worthless in helping my handwriting, fine motor and perceptual motor impairments, they did nothing to help me in my social life either.



So, really, how can any of these therapies help a child make friends and be accepted by peers. My inability to love and work due to my autism has stripped me of my humanity that Freud wrote about over a hundred years ago. Autism speaks in their zeal to provide a quick fix has trivialized my lack of humanity as well with this demagogic campaign and video. The capital behind this organization and others, and the other lobbies are so powerful, they will likely get the insurance reform they want. Not only in the legislatures of all 50 states but with the federal government as well, closing any loopholes. The results will wreak financial havoc on Blue Cross, Kaiser and other hapless health care providers when the plethora of families affected by autism are fueled with the false hope that this video gives, not to mention the lower quality of health care we will receive because these insurers have to pay for autism therapies. The cost of health care insurance in the U.S.A., which unlike other countries has no national health coverage ,will undoubtedly skyrocket even more, considering how much it is increased, considering as many as 1/150 children may be receiving these treatments once they are mandated.

I think of not only all the women that have rejected me and how unfriendly they were to me, I also think how hard it was for me as a child, constantly getting into conflicts with other kids my age, being teased and picked on, being rebuffed and being kicked out of their homes because they found my behavior and autism so offensive and they were so prejudiced against me. So, according to autism speaks' latest propaganda campaign, had these "evidenced based" therapies been available in my childhood, had I done these interventions instead of undergoing psychoanalysis, and my parents' medical insurance had paid for them, I would not have been rejected. I would have just been fine. Instead of the arguments and other kids kicking me out of their houses, I would have been invited on playdates. I would not have been rejected and rebuffed by peers. How comforting it must be for parents and their children to know, these "evidenced based" therapies will ensure that they will not only have to worry about unemployment, but will have a ton of friends and girlfriends to take to their regular high school prom. They can make their six figure income, marry their high school sweetheart they took to the prom and live happily ever after. Perhaps I sound bitter in this post because I am.

Well maybe after all these insurance bills are passed and the millions upon millions of dollars of reimbursement that will be coughed up for all of these "evidence based" treatments are paid for, maybe we will see some studies or peer reviewed evidence actually showing that at least some of these autistic children were able to lead a normal social lives. If not, perhaps autism speaks will have even more reduced credibility. No one will probably even noticed that they gave Laurent Mottron, a medical doctor who states that autism is not harmful and is no dysfunction and is only a difference and posthumously diagnosed one historical figure he could not have possibly met since he was born after this person's death half a million bucks to do research showing how well high functioning autistics can do on various tests and tasks. But if these insurance paid treatments don't work, perhaps some people will take notice. Perhaps, there will be more internal strife in this organization than we are now witnessing with the resignations of Allison Tepper Singer and Eric London. Perhaps AS will end up losing their donations. They might have to sell their Lear jet, cut Mark Rothmeier's (sp???) salary by a few hundred thousand dollars and perhaps cut out some other frills.

Of course, I might be wrong, we might be seeing some autistic kids getting married young, winning popularity contests and being elected presidents of their student body.

Let the chips fall where they may.

13 comments:

Marius Filip said...

The video is indeed outrageous. The difference is not in the insurance, it is in the intervention. Putting an equal sign between the two is preposterous.

Your mistake, Jonathan, lies in the fact that you take an "all or nothing approach". If the benefits of ABA don't extend into adulthood, then ABA is worthless. If speech therapy doesn't help with socialization, then it's worthless.

So, according to you, a child with autism should be left with a low IQ and no speech because a higher IQ or the presence of speech are not enough for him to be on par with his fellow humans of the same age.

Harold L. Doherty should let his son have temper tantrums, soil his cloths and bite his hands because ABA will never enable his kid function on par with a neurotypical when Conor will be an adult.

I disagree.

Regarding the recovery from ABA - at least up to age 13, I sent to you some references showing that other folks replicated the results of Lovaas. You continue to disregard them.

Regarding the effectiveness of ABA as an intervention for autism, there are hundreds of studies showing the effectiveness of behavioral therapies on various niches of autism.

See http:// www.shapingbehavior.com/ whatisaba.html

(remove spaces in the address above).

" Following a comprehensive review of these studies, DeMeyer, Hingtgen & Jackson (1982) concluded ". . .the overwhelming evidence strongly suggest that the treatment of choice for maximal expansion of the autistic child's behavioral repertoire is a systematic behavioral education program, involving as many child contact hours as possible, and using therapists (including parents) who have been trained in the behavioral techniques"

Now, I agree with you that these studies don't prove full recovery, and I agree that there is no study concerning the functioning of recovered kids as adults.

Yet, ABA's effectiveness in autism is proven. On some niches, at least.

Regarding socialization, I recommend you read Do-Watch-Listen-Say by Dr. Quill.

The problem of autism is gaining momentum in recent years because scientists start to realize that the problem of autism is, ultimately and essential, social ineptitude.

I expect that in the next years good things will come out in terms of intervention for socialization.

Regarding the issue of insurance coverage, my saying is this: serious studies should be conducted in terms of costs versus benefits. Apart from propaganda or politics.

farmwifetwo said...

I don't subscribe to evidence based treatments b/c IMO there's no evidence except a link war btwn those that think these things are the "be all and end all", those that don't think that way, and I have yet to see any decent research on autism treatments.

As for "will this help". It depends. If you cannot communicate, if you cannot learn, you will always be an outcast so you have to first get to that point.

What most people, parents, educators forget is that with autism you have to teach social skills and behavioural skills. These things take YEARS to learn, it's not a matter of reading a textbook and knowing instantly how to survive the social world. So you need to start early and with guidance from others.

To answer your question. I think insurance plans should fund whatever therapies you wish for your children - If you are going to give money to one, you give money to all. Basic communication, gross/fine motor skills need to be taught and everyone is entitled to an education. How are you to understand what's on TV, in a book or even enjoy a walk in the woods. But I also think a part of those therapies needs to be social skill/playground survival skills. They get ignored or the person get's blamed for not automatically acquiring them as they learn to talk. This... is wrong.

jonathan said...

Marius: Assuming you are entirely correct about the efficacy of ABA, this is not specifically what this post is about. It is about whether or not, the interventions proposed for autism do in fact enable children to have more friends and by extension to have normal social contacts, including marriage as adults. The PSA by autism speaks is certainly implying that this is the case.

As far as I know, there is no evidence that ABA, speech therapy, or occupational therapy, or any other intervention covered by this insurance would in fact have this effect. If you or anyone else can show me evidence to the contrary I will stand corrected. As far as I can tell no "evidence based" intervention has shown any evidence of social success among autistics.

Marius Filip said...

Jonathan

I understand your point, but it is about how you define success.

If it means full recovery and normal functioning - in social, professional, adaptive, cognitive, or whatever areas - then no, there is no irrefutable proof for that, as you point out.

But if you consider success a higher degree of independence as measured by standard tests, ABA is effective (I forgot to mention that Mark L. Sundberg claims there are 1500 empirical studies showing the effectiveness of ABA on individuals with autism).

Let's take speech for example, the order would be something like that: doesn't communicate at all -> uses electronic devices -> uses sign language and some vocalization -> uses some simple speech -> uses complex speech but socially inept -> has some social competence -> has full social competence.

Now, if a treatment is able to move an individual up this scale, even if he doesn't reach the end point, such a positive change translates in lower costs for assistance (the more the individual communicates, the less assistance he needs). That is, less money for the society to pay for that particular disabled person.

A serious study on the matter should be able to balance the costs and the gains and decide whether, economically, a treatment is truly viable.

In such case the insurance companies should pay.

I already mentioned that the video is preposterous, however the idea of having the insurance companies for paying autism treatment bills is not.

It is under-researched, in my opinion, but not absurd.

jonathan said...

Again, Marius, this post is not about the nebulous concept of "effectiveness" It is about whether or not these therapies that autism speaks is saying insurance should pay for do in fact actually enable autistic children to have friends and acceptance by their peers as opposed to children who do not undergo these insurance sponsered treatments. This is what the post is about, nothing else. I am only interested in you or someone else showing me evidence that these treatments do in fact enable these children to have more acceptance and a better social life. Any other claims about the effectiveness of treatments is not relevant to this post or thread. I am still waiting for you or anyone else to show me evidence to that effect.

Marius Filip said...

Jonathan

If a child does not speak and after a while he speaks, would you consider this a basis for better acceptance in life?

If you say NO, then nothing will convince you and this thread post is useless since there is no complete solution to the problem in the foreseeable future.

If you say YES, then you get the answer.

The problem is not black and white. There is a huge range of shades of gray. And there is no global solution for the moment - just little progresses within various niches. And the worst part is that those little progresses don't even occur for everyone.

You say "show me the evidence" but when you are told about the components of what you're asking about (socialization) you say back "this is no socialization, show me the evidence for socialization".

Yet, socialization is not a monolithic reality. It is formed of a myriad of skills - which are addressed one by one by current treatments.

But you won't accept those because they are not socialization as a whole.

If you have a different idea to explain what a solution to the problem would be for you - in the current conditions, of course - I'd be interested to hear it.

But I'm quite sure that, when you take the phenomenon (socialization) and analyze it, you end up with what's currently known at the moment.

Forget the video, as bad as it is. It's advertising. The reality is different and each little progress helps.

The true question is, to me at least, "are these progresses worthy of the effort and of the financial endeavors envisioned by such legislation"?

In all sincerity, I thought the question raised by your post is the same. That's why I tried to give an opinion.

SM69 said...

I place myself as you know Jonathan as someone who has seen many children involved in various intervention programmes, from Son-Rise to ABA, FastForWord, RDI, and with or without Biomed. I can guaranty, but no doubt you will not take my point because you cannot believe my testimony or the testimony of the parents for this matter, I can guaranty that children with an intervention do improve greatly and some gets out of the spectrum, gets into mainstream and have FRIENDS and NORMAL socialisation. This is not for everyone, but many children do improve. I met this week a 9 year old boy who a year ago was head banging, he could not play then, he was not interested in his siblings, he would not pay attention to instructions or verbal information, and was not able to attend, not smiling, he would not engage. I played with him the whole time, once he started to come near me seeking attention in very appropriate ways, he smiled all the time, he laughed and he imitated my vocals and initiated new ones and we had the most fantastic time. When his mum talked to me about a recipe from Africa she does, listing the ingredients, he named that dish, even though he was nicely playing with a doll house next to his sister and brother and is still considered as non-verbal. He is still autistic, but at that age, after one year of intervention only, this is a very positive outcome, one that is hard to believe could be related to a natural evolution. I could take many examples of progress like this, not recoveries but progression.

On the issue of insurance and money- the kids who I have seen coming off the spectrum are coming from more wealthy families, they have been given everything, every single bit of their days is used in ways to promote their development. Their mothers do not work; they are in full time job supporting their ASD child.

In situation where the mother has to work or is single, there is no other way but to have the finance to pay for quality services and intervention, and this costs a lot, the Biomed part is peanuts compare to ABA and that sort of intervetion. I know right now, today, improving in autism is essentially down to money, and to the parent’s abilities to take up the challenge. It is not down to the child, when it should be limited by the child’s own limitation and nothing else if every child had equal opportunity. Right now it depends on what surround that child. I tell you, I really believe this is the case. So, that video even though it seems very shocking in a way, in simplistic terms, it is accurate.

Roger Kulp said...

Johnathan,

The longer I am involved with this stuff,the more I see we all have our own agendas as far making the world a better place for those on the spectrum,is concerned.Usually these are very personal things, based entirely on our own experiences.We may share a few common beliefs,like neurodiversity being wrong,but often that's about it.We all have our main issues, Harold Doherty's is Autistic Disorder.and LFA,mine is autism having many causes,and autism as a part of a complex medical syndrome. Mitochondrial,autoinflammatory,or whatever.

One big problem with ABA,is that it's a product of its time,the 1960s.There has been little to accommodate the changes we have seen in autism science since then. There is no question it works for some autistics,like Conor Doherty, but then I don't recall Harold ever writing about Conor having bowel disease,or immune problems.

Which gets us back to autism not being a singular disorder,but one that requires specialized treatment,based on how it is presenting with each person.

As someone whose autism was initiated as an infant,by acute infection,and has suffered multiple regressions since,from acute infection,I can see a clear cause and effect,between autism and medical issues.

But that's not everybody.

As big as the story about autism and mitochondrial disease,are the realization that there are other medical syndromes,that we have not fully identifed yet,that cause other forms of autism as a part of the clinical picture.All of which seem to share the common feature of bowel or GI disease,as does mito.

When we treat the GI disease,and other problems,the autism symptoms,and behavior improves.

Now we don't just have the DAN!s, and the Age of Autisms saying this,but we have respected doctors from Harvard University saying this.

These talks were given on July 3rd of this year,at the Maine CDC Autism Conference.I can't believe they have not gotten the attention they deserve,in the media.Probably because you have to sit and pay attention for what amounts to hour long college level lectures.

That said,I think everybody who has any interest at all in autism needs to see them.

Tim Buie, MD
Pediatric Gastroenterologist
LADDERS Program, MassGeneral Hospital for Children
Harvard Medical School


http://adventuresinautism.blogspot.com/2009/07/maine-cdc-autism-conference.html


Martha Herbert, MD, PhD
Pediatric Neurologist
Massachusetts General Hospital
Harvard Medical School

http://adventuresinautism.blogspot.com/2009/07/maine-cdc-autism-conference-genes-and.html

I suggest watching them in that order.Dr.Buie in particular has some remarkable video evidence.They both say that medical problems as a contributing factor to autism,is something that was first cited by Leo Kanner,but Kanner was dead wrong to discount them.

Oh and Dr.Buie defends Andrew Wakefield,especially based on Wakefield's later studies.Neither are fans of meurodiversity darling Paul Offit.

SM69 said...

Good points Rodger, I'd like to add this link, presenting very valid medical points:

http://www.tarzanacme.com/video.asp?VidID=notautism.

I think to say that the main problem with ABA is that it was initiated in the 60..., isn't it like saying something like, I'm not taking the train today, because it was initiated in the early 1800? Surely people are aware that trains have evolved a lot since right, BTW French trains are way better than US ones! :-)

ABA has evolved greatly, the principles work, ABA is being most effective form of teaching across fields and across settings. Including teaching pilots to fly, sport, everything incorporates the fundamentals of ABA.

Christine said...

Report on the Amanda Baggs fraud controversy:

http://amandabaggscontroversy.blogspot.com/

JediKnight2 said...

Jonathan,

That's why I see a speech therapist for socializing. The therapy the kid had in the video who was being included with his peers had therapy for verbalizing and other basic skills typically developmental peers would acquire innately.

Of course if the video were to continue the highlights as to what happens after the kid starts playing soccer, we do not see the difficulties the kid may face such as struggling to understand his peers through receptive language, and failure to recognize and express himself as to whether he really wants to or knows how to play soccer, or if he's only joining in to please his peers as he doesn't know any other way to indicate that he wants to be friends with them.

With high insurance rates needed for speech therapy, ABA and other programs which, in reality, is like getting a sex change (i.e.- man has an operation to appear and sound like a woman, yet cannot have periods) as there is no cure for autism, it's possible some of the money that's spent for any type of therapy with the insurance covering the bulk of each session a client attends is going towards autism research to help find better therapy techniques and strategies so the therapy sessions I receive for socializing, pragmatics, executive functioning and other skills become and feel less like getting a sex change and more like a treatment that's getting much closer to a cure.

In conclusion, the insurance reform legislation will continue to help autistics' social lives. In your days, things were harder but we're much closer today to understanding an autistic brain than we were decades ago.

Anonymous said...

Go to any ABA center and see for yourself. Unless you really DO enjoy pontificating about things you have absolutely no knowledge of.

Happy Autistic said...

You complain about not having friends and being celibate. I think that depression is the problem, not Autism. Look at how successful you are! You have a popular blog, you write stories, and you even publish books! You have friends. The Internet is a great way to make friends. I even heard you went to dinner with friends. As for a girlfriend, what's wrong with having an Autistic girlfriend? I'm sure NTs would want to be with you, also, but you'd probably prefer an Autistic girlfriend. Since you are so active in the Autism community, I don't see how difficult it would be to find someone. There's someone out there for everybody.