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A better way to spend money to help autistics?

Posted Jun 14 2009 11:21pm
As regular readers of my blog know, I am a rather pessimistic person as far as what I regard the prognosis to be for most persons on the autistic spectrum. I am also very cynical about all of the money that is being spent with the intent of helping persons with autism, particularly when they are children. Of course in the more severe cases of autism, the kids, while aged out of the educational system under IDEA at 22, they still have money spent on them in institutions and group homes.

A few readers of this blog have commented on how I am always a critic, how my posts are always angry and I talk about what cannot be done for persons on the spectrum. I should offer some sort of solutions to the problems of autistics they say.

What these people say may be valid, but part of the problem is that I don't really have much to offer in the way of any solutions or ideas that will really help autistics function in society. I do not believe that autism is treatable let alone curable. But is it better to spend money on treatments of dubious value such as various DAN protocols, ABA, speech and occupational therapy whose results are questionable, at least to me? Or is it better just to accept the sad truth and just say that while persons can try to educate their autistic loved ones to the extent they can be educated, to try to help set up some sort of supports, other than that perhaps nothing really can be done that greatly improve the future of those on the spectrum. I have brooked no quarters that I long for a cure and I long for scientific research on the neurology and genetics of autism that at some point of time will point to legitimate treatments that will help autistic children, hopefully cure them and in the very best case scenario prevent them from becoming autistic in the first place.

It has been pointed out to me by some that these goals are very far off and not likely to happen in the foreseeable future. I will not be cured of my autism I have been told and it is quite possible no one else born in the last 6 years or so will be either. I must agree with these statements. It is true that the research that is funded by the federal government and by autism speaks and other entities has no short term practical applications. We can't just think in the long term. Autistic people need help and suggestions NOW. Last night an inspiration hit me and I have an idea how money might be better spent to help persons.

Before I state my idea I would like to comment on how money is spent on autism. We have the DAN practitioners that charge a great deal of money. Some of them I have remembered reading have hung out their shingles without clinical training or license of any kind. A few of them who are licensed physicians have been disciplined by their state medical boards, giving the DAN protocols a rather unsavory odor. The lack of peer review and evidence of DAN's successful outcome has not been daunting to most desperate parents. the secretin saga is one of the most flagrant and indeed saddest examples. Thousands of dollars are spent on ABA and some parents have taken out second or third mortgages on their homes to pay for this treatment that gives a promise of a coin-flip probability of complete recovery or cure for their children. The lack of published adult outcomes, the questionable methodologies of Lovaas (1987) have not deterred parents from trying to obtain this treatment for their children. Also, a great deal of money is spent on speech therapy, occupational therapy and other treatments of dubious value.

The Individuals with Disabilities Education act was passed in the mid 1970s with the intent of helping persons who are handicapped get the "free and appropriate education in the least restrictive environment" that they deserve. About 60 billion dollars a year is spent on special education, a 60 fold increase since the law was passed. This figure probably does not include attorney fees for special education litigation by both the parents and the school districts and the jamming of our court systems.

The IDEA in fact has generated a variety of supreme court decisions. The Shannon Carter case is of particular relevance as it paved the way for any person regardless of their license, credentials or lack of to hang out their shingle and be an autism practitioner. This is why ABA is usually done by college students most of whom have no license, qualifications or credentials and are not even old enough to legally buy a six pack. While there is board certification for ABA specialists, it is not done by the government as is the certification of doctors, dentists and psychologists. There are no government licenses or regulations and the BCBAs are accountable to no one but themselves.

Not only can special ed students be taught by uncredentialed teachers at taxpayer expense due to this decision, but apparently any aspie who was either self-diagnosed late in life or has a questionable diagnosis well into adulthood only after their own children were diagnosed with an ASD can apparently set up shop and charge desperate parents what the market will bear. I have been told that Michael John Carley who appears to have no formal training or qualifications is a paid consultant of some sort by the NYC school district. (Mr. Carley or anyone else can correct me if I heard wrong) Valerie Paradiz who also wrote about about her son and managed to receive some sort of diagnosis well into adulthood has hung out her shingle as an autism consultant and set up her own autism school. Ms. Paradiz is a Ph.D. in English literature with no formal training of any kind in autism whatsoever. Last but not least is William Stillman whom I have written about previously who self-diagnosed himself with Asperger's well into adulthood, has no qualifications whatsoever except a bachelors in education yet charges parents $100 an hour for phone consultations, though he is too ethical to charge for email consultations. He claims he can know exactly what an autistic child needs after spending ten minutes with him/her.

Are all these billions of dollars on autism well spent? I do not believe they are, so I offer an alternative. Instead of spending money on DAN protocols, special education, ABA, attorney's fees, etc. how about upon after receiving a diagnosis of autism at 3 or whatever age, the parents consult with a financial advisor. Instead the money can placed in the hands of someone (hopefully not a Bernie Madoff type) who will invest it wisely for the child. It might even be able to be invested in a tax deferred IRA type of account. A smart financial advisor would be paid approximately 1% of the portfolio which would be plenty of incentive to get good returns on the investment. The stock market though risky apparently generates returns of about 10% a year on average over the long haul. There are probably mutual funds that are less risky but could generate a fairly decent return over the long run. There might even be commodities that the savvy financial wizard could invest the money in.

Upon turning 22, the age which they would be normally aged out of special ed services in the USA, they could receive this account and it would become liquid. If they are too severely autistic to manage the money, a parent or other relative could be a trustee or executor of the money. If they are mildly autistic, they could likely become wealthy, possibly even multimillionaires if the portfolio was invested wisely, even with a conservative financial advisor. If they are lonely, plenty of people would want to be their friends. If they are horny males unhappy about their celibacy they will have the means to hire hookers. They won't have to worry about being fired left and right from jobs because they won't have to work. They also won't have to go to the trouble of applying and litigating for SSI. I do not believe the fact they never received ABA, chelation, DAN protocols, speech or occupational therapy etc. would make a difference in their lives or contribute to their being recovered from autism or being able to function better. Therefore I believe my idea is the best that can be done for persons with autism over the short term until cure and prevention are found.

Though I grew up in the 1960s before we had IDEA, ABA and the various autism treatments. My parents spent enough money on psychotherapy for me with various therapists to buy a huge building. This was in addition to the private special ed schools I attended that in those days were not financed at taxpayer expense. Also don't forget the tutoring I had for my perceptual motor problems and fine motor coordination and handwriting impairments that did not help me at all. Quite a bit of money was spent on that. My parents could have spent a fraction of that money on McDonald's stock in my name in the late 1950s when MCDonald's made their IPO and I would be a multimillionaire now. Or the money could have been invested in more conservative things and I still would have made out well. I would not have had to endure the humiliation of trying to make a living and being fired so much.

So for the readers of Gadfly who have complained I have no positive constructive solutions to offer, here is mine. If you have something better to suggest than the above, I welcome them. Good luck.
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