Friday, February 11, 2011

New law proposed in connecticut: what's the point?

I was interested to read about a new law being proposed by the Connecticut state legislature against bogus autism therapists. Apparently a woman who only had a high school education claimed to have advanced degrees and credentials as a professional autism therapist and bilked the hapless parents of some autistic children out of thousands of dollars.

I have to wonder what the point of this law is. I have already written about William Stillman who charges $100 an hour for a phone consultation in spite of not having any credentials and a self-diagnosis of Asperger's and presumes that autism is a new evolutionary development and in 5 to 10 years the prevalence will be 1 in 10.

I have also mentioned Valerie Paradiz in the past, who admittedly has a Ph.D. in German literature yet misleads people by flaunting her Ph.D., advertising herself as a paid autism consultant.

Interestingly enough, one of the person's pushing for this legislation seemed to be from autism speaks, who has John Elder Robison, a high school dropout, on their scientific advisory board amidst the M.D. and Ph.D. scientists, so it is rather strange that they care about these qualifications.

Additionally, federal special education law does not have a precedent where people are required to have credentials or training. This has been decided upon by the Supreme Court in the Shannon Carter case. The Carter decision also set the precedent for a New York court decision Malkowitz v. DeBuono which paved the way for uncredentialed, untrained Lovaas/ABA therapists to practice at taxpayer expense.

So I am wondering what is the point of this law?


Anonymous said...

I agree. There is no point. Even supposedly "qualified" individuals in the autism/ABA field seem to be on the take. These BCBA supervisors come in, do little and get paid around $200per hour. Such a bunch of scams.

And nothing surprises me about that media whore Robinson. He'll attach is name to anything.

Anonymous said...

Why am I not surprised that A.S. and John Robinson want in on this? A high school drop out representing A.S. shows just how low A.S. will go. They hire do nothing publicity seeking hounds. I'm just surprised that other complete media whore (to use that wording) from Autism Speaks, Judith Ursitti from Dover, MA., doesn't jump on the band wagon. Autism Speaks and the people they choose to represent them are a joke!

SM69 said...

The problem as I see it, is that there is not one degree that could possibly guaranty knowledge and skills as far as autism interventions is concerned.

Take current examples of what is happening today in UK special education: Verbal children speaking at single word levels and in short sentences to make requests of various types are being asked to use PECS… This is the last thing a child like this needs, but it is always what is being proposed. Why is that? Because PECS and TEACH are the only interventions the educational professionals know about. So they give it by default. What this proves is that not only they are not aware of what can be done to assist communication in autism, but also, they cannot think and be critical.

Take other examples, and these abound, from the health care system. In the last month, two cases were 24hr away from their deathbed, because doctors could not recognise the sign of rupture appendices in an ASD child. They did not listen to their parents pleading for help, the parents who knew there was something very wrong with their kids. What kind of doctor cannot recognise that common condition in Autism? Actually most of them. And there are other co-morbid health issues, as we know, that are never looked at. This has been our personal history and the one of many parents I have met.

Let’s look at the psychiatry system- all I can see is drug, drug, drug. Do they know what can lead to symptoms? I don’t think they even bother thinking about this. So we have situations such as diagnosed inflammation of the gut, multiple protozoan infections, and issues of sudden challenging behaviour being dealt pharmacologically with anti-psychotics, and through incarceration in padded room under CCTV camera surveillance. This is happening today in hospital settings. SIGN (Scottish Intercollegiate Guidelines Network) recommendation for autism: Risperidone- that is ALL. GF/CF does not work and ABA does not work.

I will skip on the situation in France that is even more Kafkaesque.

So what is left in terms of knowledge?

The biggest knowledge of all, is the collective experience of parents. Can people facilitate parents to sort out what can help and what is less likely to, prioritise intervention, get out of a crisis situation, etc? Yes I really think, some people can have the ability to think critically and amass substantial knowledge across media, academic, people’s experience etc. But what can prove whether this person is of value or not? Well, only the outcomes can, right?

So, instead of making limitations on invalid criteria, why not ask, for evidence or report of outcomes, even if there is no funding available, it must be possible to produce more transparent information on activities.

I would like to add that there is a clear phenomenon, unique to the US regarding costing. We are talking big money for most interventions-but who’s fault is that? The doctors or therapist? Actually, no, they do what everyone else does in your country. The main problem is your system, limited local and national government support etc. In the UK, we get funding for parents to undertake interventions that are not available from Gov services. And it is not done through marches as AS organises, where little will return to the families. It is done from funder to families directly.

So, why not change this too? Impost a limit how much doctors and therapist can charge and set more ethical national or local funds.

There is a lot that can be done in autism and let’s never forget this, and let’s always focus on this. Ranting and anger rarely helps.

SM69 said...

Actually I quite like that "media Whore" expression, I had not come across it before, but it describes pretty well what many tend to do in the UK too, and this is not necessarily very helpful to autism.

SM69 said...

Sorry I meant: The collective experience of parents AND people with autism. Obviously the reason why I read this blog is to hear from people with autism and because I care for this; this experience is also very invaluable and must be integrated in that global community knowledge of autism.

John Elder Robison said...

Just so you know . . . I have no interest in the proposed CT law. I am not involved in any way lobbying for or against it.

Anonymous said...

I read these reviews of his book and life in general and I agree, he sounds like a complete phony. I am appalled at the gullible autism mommies who have fallen for this ass.