Insurance coverage: salvation or harm for autistics?

One of the ongoing activities that autism advocates (people trying to fight for certain perceived benefits for autistic people not michelle dawson's rather ironic use of the term) have been engaged in as of late is seeking insurance coverage for various treatments that are related to autism. These include ABA, speech therapy and occupational therapy. One of the impetuses for these treatments is that even though under the IDEA parents of autistic children are in a position to obtain these treatments at the expense of local school districts, the options are not always tenable. School districts, for obvious reasons are often recalcitrant about paying for these treatments and in special ed law, as in other areas of law, the statement "free and appropriate" education is open to interpretation.

One of the problems with pursuing legal recourse against school districts is the landmark supreme court decision in the Rowley case in which it was determined that appropriate did not necessarily mean best. There are certain parents who don't understand this concept. One of the more prominent of these is blogger Kristina Chew of the autismvox blog. She has consistently stated how she believes that she is entitled to the best educational opportunities for her son at taxpayer expense, even though the supreme court has nixed this option. Sometimes special education lawyers advise the parents whom they represent to never use the word "best" when asking for services from the school districts for their children. This might make it hard for a parent, for example, to receive 40 hours a week of ABA for their child, because less hours might be deemed appropriate. Then when the coin flip probability of complete normalcy that has been promised with this treatment is not obtained for the child by the time they are 7 years old, then the behaviorist excuse of not enough hours can be employed. Also this is not to mention the problem of costly law suits and having to pay an attorney thousands of dollars up front in some instances for the dream of normalcy and the child becoming a productive member of society not having to live in the dole as an adult and being able to function in society. Nor to mention the conflicts the parents have to go through with the school district and the work of having to have an IEP. Often, it is the well-to-do that have these options available for them, having both the money and sophistication to employ legal counsel to pursue their agenda, and the less affluent being left out in the cold.

One perceived way to circumvent this misery is for medical insurance to pay for these treatments instead. There would be no IEPs, no costly attorneys (or at least in less instances). All the parent with medical insurance has to do is file a claim with the insurance company and come up with a percentage co-payment. If they belong to an HMO such as kaiser permanente, they could have tens of thousands of dollars in ABA therapy paid for nearly in full.

Autism speaks and other organizations have made a push to have coverage for autistic children. There have been pushes in Virginia, south Carolina and Pennsylvania for at least limited insurance coverage for these treatments for autistic children, that until very recently insurance companies would not pay for because the treatments were either considered experimental or educational rather than medical.

As I have written in the past, the efficacy of ABA is dubious. Even though Lovaas and his disciples such as Tristram Smith have been given top priority NIMH funding to study adult outcomes in the children in their famous 1987 study, they have yet to publish these though they have presented data informally at conferences claiming some sort of effective adult outcomes. But still there is no evidence that children who undergo 40 hours a week of ABA will be able to be gainfully employed or be successful as adults. Ditto for speech therapy and occupational therapy. I was a nonverbal autistic in the late 1950s who fully recovered my speech with the only intervention being psychoanalysis. Even if an autistic child who undergoes speech therapy recovers their speech this does not necessarily mean there was a causal relationship between the speech therapy and the child talking by the time they are five years old so the financing of these treatments via insurance may not accomplish much.

What is most worrisome of all to me is that autism may be considered a pre-existing condition by insurance companies and HMO's such as Kaiser who often cherry pick patients based on lack of pre-existing conditions. Until recently autism would not be considered a pre-existing condition. A parent who wants to get medical insurance for their autistic child to treat conditions not related to their autism would not have a problem getting the insurance. But what if this insurance legislation is passed in a lot of states. What if the cap on treatments becomes higher than $50,000 after even more intensive lobbying by autism speaks and other advocacy organizations? Does this mean that Kaiser and other HMOs will start excluding families from coverage due to having an autistic child? Does this mean that if an autistic child gets leukemia, Crohn's disease or needs orthopedic surgery of some sort they will not be able to receive treatment? The answer would seem to me to be yes. Would this mean that parents of the children would be excluded from medical coverage as well. This might mean that if the parent had a treatable medical condition they might not be able to get insurance because of their child's pre-existing condition of autism.

For this reason it seems that this insurance lobbying is not only more tears of toasted snow being cried by the parents of the children but also could provide great harm if the children are not able to have medical treatment that they need that is unrelated to their autism if they need for it to be covered by insurance.

autism speaks ensures journal articles of research they fund are available

There is now some good news among persons who are interested in free access to peer reviewed journal articles that report the results of autism research.
Autism speaks has announced a new policy They now have a policy where all researchers who receive funding from them have to put the resulting publications into pubmed central online archive within 12 months of publication. Access to these articles is free. This is a good deal for those who do not live near a biomed library like UCLA who otherwise might have trouble obtaining journal articles like these. Normally these articles can be purchased over the internet by interested parties, but the cost is often like $30 or more per article, which seems to me to be pretty steep just for a journal article. This will help disseminate information to those persons who are interested in autism and the research findings of those who receive funding for research from autism speaks. Autism speaks says they are the first nonprofit organization to implement such a policy. these articles are available at www.pubmedcentral.gov for those who are interested in these forthcoming articles as well as other free articles that are available.

I wish everyone from the government on down (or up depending on your point of view) would institute this policy. I live near UCLA so I can obtain a lot of these articles if need be. Of course it is always a hassle to xerox them and it costs like 15 cents per page at UCLA and you have to purchase this card to use in the machines. Due to my perceptual motor problems, I sometimes have trouble lining up the pages properly and it takes several attempts for me to xerox some of the article pages and get everything on the page.

UCLA used to have the Journal of Autism and Developmental Disorders on their shelf in the biomed library which I would browse on a regular basis. At one time, this publication came out four times a year. Due to the increased interest in autism research, the JADD now publishes something like eight times a year. UCLA no longer seems to have it on their shelves and this is a disappointment to me. My disability and other commitments make it hard for me to keep up with as much research as I would like to keep up with. Hopefully someday that will change and I will have more juicy tidbits to add to this blog. I think now UCLA has JADD and some other journals available online and maybe some day i will investigate and become a more regular reader of JADD and then some of the other journal articles.

Though admittedly autism speaks is a less than perfect organization, I applaud them for instituting this policy.

autistic middle school student starts school club for autism speaks

I was very interested to read the following excerpt from an email that I received from the Florida chapter of autism speaks:

Walk Team News Congratulations to David McKibbin (a young man with ASD) for starting the first Palm Beach County Student Club for Autism Speaks at Bak Middle School of the Arts. Recently we spent a day at the school talking to students about autism and how student involvement can change the lives of everyone at the school. Meet David at the Kick-off Luncheon on December 3. The Bak Student Club for Autism Speaks has already started their fund raising efforts by selling candy during lunch. We want to spotlight you and your team fund raising efforts! Send your fund raising story to palmbeach@autismspeaks.org and see it in an upcoming email blast.

So it would seem that contrary to what some persons in the neurodiversity movement believe there are some persons with autism who do support what autism speaks does and their research. These proponents of neurodiversity give persons the misguided idea that the vast majority of persons on the autistic spectrum think exactly as they do. Though some of the criticisms that certain people make about autism speaks may possibly be justified, such as the fact they are like a big corporate entity that spends money on salaries, jets and other frills that could be going to autism research, they are a good organization in some respects in that they fund research that will hopefully someday lead to a cure for this dreaded disease or if that is not possible at least prevention. Prevention, not abortion, meaning that the person will have a shot at a better life. This is yet another example where neurodiversity is mistaken about at least some autistic persons not wanting a cure.

Some of them may claim that as a middle school student, David Mckibbin may be too young to know any better and may have been fed propaganda or been indoctrinated by his parents. However, one must remember 14-year-old Kelly Beck who made the nasty website NT speaks and when autism speaks threatened legal action she was forced to close it down. In fact, she did not even want her parents to know about it as I recall.

Hopefully, to the chagrin of the ND movement, there will be more student clubs like this and more and more autistics who have the good sense to promote research leading to curation and prevention.

Neurodiversity hypocrites attempt to hijack IACC and CAA

Recently the IACC(interagency autism coordinating committee) has asked for ideas on the direction autism research should take from the general public with a vested interest in autism. Various blogs that are linked by the neurodiversity autism hub have commented on this and have urged persons to file requests.

The autism self-advocacy network has not failed to miss the beat. They have made multiple requests to the IACC and how they should pursue an autism agenda that mirrors the same tired cliches propagated again and again by the ND movement. Not doing research with the intent of curing or preventing autism, not referring to autism as "devastating", or as a "burden". Also, they note the fact that only 1% of the NIMH's budget goes for services to help autistic persons and believe that this should be rectified.

In one of the most bizarre statements they write:

Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.

Along with ASAN president, Ari Neeman, this ND agenda is signed by some other persons as well including the author of the Joy of Autism blog Estee Klar-Wolfond.

If I am not mistaken, Ms. Klar-Wolfond is a Canadian citizen not living in the United States who I am fairly certain has never paid a dime in American taxes. Yet she seems to think for some odd reason that she has a right to make suggestions to the IACC, which is a U.S. government agency created with American tax dollars. Last year, I wrote about two other members of the neurodiversity movement, Michelle Dawson and Mike Stanton who also were writing letters trying to influence the direction of NIMH autism research totally funded with public sector dollars, in spite of the fact that it is very unlikely either has paid any American taxes, yet they feel they have as much right as I have as an American taxpayer to make suggestions for directions U.S. taxpayer funded autism research should take.

I would like to comment on some of these points. First, they seem to think there is something wrong with the fact that 99% of NIMH's budget does not go to these services they so covet. I think there is something wrong with it also, but only because instead of 99% of spending on medical research the NIMH's budget should be 100% funding of medical research. What Ari Neeman and his pals don't seem to understand is that this is the purpose of the NIH and NIMH. You notice the h stands for health. This is because being autistic is being in poor health. Someone who has autism has a disease, a disorder, etc, though I am not sure everyone in the ND movement understands this. This is why the NIH and NIMH were set up to fund medical research and not services. The reason scientific research is funded in autism is the hope to find more effective treatments including prevention and even a possible cure. Some persons in the ND movement seem to think this research is funded so scientists can pay their mortgages and amuse themselves. They should be lobbying congress for services if this is the direction they want autism funding to take, but not under the combating autism act.

You notice the italicized statement about not making autistic children nonautistic but allowing them to function as autistic people so they can maximize their capabilities. Such incredible oxymorons seem to be par for the course for the ND movement. If they function like autistic people this means having language problems, self-stimulatory problems, inability to relate to people, etc. The only solution is for them to function as non-autistic obviously. The ND movement can't have it both ways no matter how hard they try. If they were able to function properly, they would be cured, they would no longer be autistic. Of course the ND movement fails to understand this.

What is most interesting of all, the ND movement seems to want to take advantage of a law that they don't like. We can see examples of this here and here We see by the second example that the CAA was originally drafted by Cure Autism Now, the favorite whipping boy of the neurodiversity movement before they were gobbled up by Autism Speaks. This seems ironic that neurodiversity is clearly opposed to the intentions of this law, which are to prevent and cure autism, yet they want to take advantage of one of its provisions. Seems hypocrisy is pretty rampant in the ND movement. The main reason is that the neurodiversity movement is really very small and weak. The persons involved in it have limited capital and lobbying power. The internet gives the illusion that the ND movement is stronger and more powerful than it really is. This prevents them for being able to pursue their deranged agenda on their own and having to hijack the money that was set aside for something they oppose and for them to try to use it for something other than its intended purpose.

This is aside from the fact that the IACC is pretty much a colossal joke. They have one person on the autism spectrum, Stephen Shore, who serves on the committee that was created for the purpose of curing and preventing autism, yet he himself is opposed to a cure for autism. They also have Mark Blaxill and Lyndell Redwood, who cling to the disproven hypothesis that vaccines cause autism, guiding the direction that research takes. Not that I think a cure for autism will be a reality in the foreseeable future even if the funding bodies did not make so many blunders, but having people like these three on the IACC does not bode well for future research.

This complete hypocrisy of the ND movement is among the many reasons that I urge people to just say no to neurodiversity

research leading to possible cure for autism

I have just listened to an interesting radio show on NPR, about research being done to reverse the symptoms of fragile X syndrome. I realize this might be another flash in the pan and nothing that could really lead to any sort of breakthrough. However, the implications are fascinating as well as the fact that this might be able to cure autism once and for all at some point in time. Wouldn't this be a kick in the head to the neurodiversity movement who thinks genetic research would result in abortions of autistic fetuses and some who even believe that this will happen. Well, might not be the magic bullet we are all hoping for that will cure autism, but an interesting show any how.

nearly half of california special ed students fail high school exit exam

Today I read an interesting piece in the Los Angeles times about the relatively new high school exit exam that has been mandatory in california for a bit of time now. 2008 was the first year that special ed students were required to take it alongside their nonhandicapped peers.

In spite of the pie-in-the-sky promises of the IDEA, ABA for autistic children etc., it came as no surprise that only 53.8% of those special ed students passed the exam while 46.2% failed. So nearly half of all children in the california high school classes of 2008 who receive special ed services won't be receiving their diplomas. By comparison 93.6% of non-handicapped high schoolers passed the exam.

Sid Wolinsky from Disability Rights Advocates who tried to exempt special ed kids from the exam was quoted as saying that the psychologic damage to these children is horrific. Dozens of parents of these children offered Wolinsky sworn declarations of their children's depression from failure of the exam. It must be noted that the California state law only applies to public schools and private school students are exempt. It was the class of 2006 who was first required to take this test. Special education students were exempt in 2006 and 2007.

State supt of public instruction, Jack O'Connell who sponsored the exit exam bill for then governor Gray Davis was quoted as saying that exempting special ed students from the exit exam was not helping them and setting them up for failure in the workplace.

One of the reasons for passage of the Education for all handicapped act in 1975 (later to become the individuals with disabilities education act when it was reauthorized in 1991) was that if handicapped students were to receive educational opportunities, that this would help them succeed in the workplace and welfare, SSI, etc. would be greatly decreased for those handicapped children who received IEPs under this law. Someone named Jacobson also did a cost benefit analysis of ABA for autistic children stating the exorbitant costs of ABA therapy were greatly exceeded by the costs of a life on the dole and claimed that ABA was saving autistic children from life on the dole. The quality of science in this analyses was typically very bad, as no adult outcomes have been published in the peer reviewed literature for ABA. Jacobson only used an informal presentation at a conference to prove ABA's efficacy in preparing adult autistics for the workplace.

The IDEA has now been in existence for over 30 years, spending on special education increased 60 fold in less than a 30 year period. One has to wonder if the nearly half of special ed students who failed the exit exam won't have significant problems in the workforce starting at age 22 when they are aged out of special ed services. Perhaps it is time for reexamination of the IDEA and whether or not this law should be abolished.

Banned from wrongplanet forum

Well I have just been banned from one of the forums on Wrongplanet.net. It is a vilification of John Best. I posted to them about the errors of their ways just politely telling them they should be accepting of john best and not vilify him since neurodiversity is supposed to be about compassion and acceptance. It would seem it is very possible that John Best is on the autism spectrum. I told them they were being inconsistent in their philosophy if they did not accept him as one of their own. That in order to be consistent with their philosophy they should just be accepting of him. Dave Seidel countered with some stuff about how I was wrong. Someone else was asking why I am a person who is opposed to neurodiversity would be posting on wrongplanet. I told them I was just trying to show them the errors of their ways and that forums that preach to the choir are boring.

Someone named Harry Brown then went on to claim that he has tried to be helpful to me in the past suggesting ways that I could work and get my writings published. Interesting I have never seen those posts. I have only just seen some nasty, angry comments about me that he has made on wrongplanet. What is more bizarre is that harry brown claimed he thought that my essay about undiagnosing gates, einstein and jefferson was not very good. He basically called it a high school essay, crap, said I was crass and superficial etc. Yet he seems to think my writing is good enough to be published if he has offered me help in getting my writings published in the past. That seems very strange to me. Mr. Williams seems very angry and often makes abusive posts from what I have seen. It saddens me he has to embrace a flawed ideology like neurodiversity just so he can feel better about himself.

I tried to post a follow-up to Seidel's and William's nonsense and then was notified that I had been banned from the forum.

I said nothing rude or nasty to anyone. I was very polite. It just seems that wrongplanet.net wants to engage in censorship. Some of the members it would seem complained to someone and got me banned from the forum. As is typical, in the neurodiversity movement, they are intolerant of anyone who disagrees with them. When I have deleted some posts here by people who were very abusive towards me, harassing me, trying to bait me, etc. They have cried censorship, etc. Once again neurodiversity seems to throw stones from a house made of extremely fragile glass.

I guess there is no point in anyone trying to post on wrong planet who disagrees with anything they have to say as they are clearly intolerant and have no interest in having a dialogue with anyone. I guess this is par for the course from the neurodiversity movement.