An Open Letter to the Autism Treatment Center of America

This letter has been mailed to correspondence@option.org and posted here.
I have just read your press release announcing Raun Kaufman’s appointment as Director of Autism Treatment Center of America. I fully endorse the sentiments expressed by Kevin Leitch in his Open Letter to Raun Kaufman. I too am appalled to see that you are exploiting the deaths of Katie McCarron and Ryan Davies to promote your organization. This is in direct contradiction of the wishes of Katie’s family. Katie’s grandfather, Mike McCarron has paid eloquent tribute to Katie’s memory on Kristina Chew’s Autism Vox that contains these words.

“I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.”

Please read it in full and you will learn that Katie was a vibrant, happy girl who was much loved and loving in return. Her life was full of hope and not the hopelessness that you suggest.

Omissions and Inaccuracies

I was also concerned by the factual omissions and inaccuracies in the press release. Most glaring was the failure to correctly identify Ryan Davies as having Fragile X Syndrome. Or are you suggesting that SonRise can also repair abnormalities on the X chromosome?

The prevalence figure of 1 in 10,000 that you cite has no basis in fact. The landmark epidemiological study in the UK established a prevalence of 4.5 in 10,000. (Lotter 1966) When Lorna Wing (Wing and Gould 1979) discovered that autism was not a narrow disorder but was in fact a broad spectrum this raised the prevalence to 20 in 10,000. At this time most cases of autism were thought to be associated with mental retardation. The introduction by Wing (1981)of the work of Hans Asperger to the English speaking world reversed that. By identifying and including autistic people with average and above average IQ the prevalence rates do indeed approach 1 in 100.

The press release initially uses “autism” to refer to

“children [who] will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.”

It goes on to say that,

“According to the National Autistic Society, it is estimated that over half a million people have autism in the UK, with more than 2 million people affected by the disorder.”

It later refers to autism as one of many autism spectrum disorders.

“Autism treatment specialist Raun K. Kaufman is currently on a 10-city free public lecture tour across the UK and Ireland this September entitled: Breakthrough Strategies for Autism Spectrum Disorders. The specific strategies he will address have been shown to have an immediate impact on children with Autism, PDD, Asperger’s Syndrome, and other related developmental challenges.”

Anyone unacquainted with the facts or the way that the terminology has changed over the years could be forgiven for taking this to mean that there are now 500,000 “unreachable” people with autism alongside all the others on the spectrum and presume that they make up the “more than 2 million people affected by the disorder.”

According to the NAS there are an estimated 528,500 people, both adults and children, on the autistic spectrum in the UK. But this figure encompasses the entire spectrum: Autism, Aspergers, PDD-NOS etc. It includes over 400,000 people with average or above intelligence. With proper support in childhood this group will require less support during adult life and many if not most will be completely independent. There are only around 23,000 people with the severest forms of autism described by Kanner and measured by Lotter and an estimated 93,000 with other spectrum disorders who will probably require some level of support throughout their lives. The 2 million refers to their immediate families, who are indeed affected by a triad of impairments, if we define that triad as impairments in the health, education and welfare services available to autistic people and their families.

Misinformation and Misunderstanding

Compared to the unethical exploitation of these two children’s murders it may seem unduly pedantic to go on to question the accuracy of the information. But misinformation leads to misunderstanding. It is this lack of understanding that fosters feelings of helplessness and hopelessness in parents. Your publicity material strongly suggests that autism is a hopeless condition unless people turn to you in order to

“learn how to help their children, for the first time, to begin to cross the bridge from their world to ours.”

By talking up the hopelessness of autism in this way you are no better than the snake oil merchants who tout biomedical cures for autism on the back of a spurious autism epidemic. And what of the parents who come away from your “free public lecture tour” convinced by your message of hopelessness but unable to afford your package of hope or persuade a charitable foundation to fund it for their child? Who will bear the ultimate responsibility if any of them follow in the footsteps of Karen McCarron or Alison Davies?

REFERENCES:

Lotter, V. (1966). Epidemiology of autistic conditions in young children: I. Prevalence. Social Psychiatry, 1, 124-137.

Wing, L. (1981) Asperger Syndrome; a clinical account. Psychological Medecine. 1981 Feb;11(1):115-29.

Wing, L. & Gould, J. (1979): Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism & Developmental Disorders, 9, pp. 11-29.

7 thoughts on “An Open Letter to the Autism Treatment Center of America

  1. Regarding Verstraerten (1999), Geier (2003) and Holmes (2001) Pubmed has no record of publications by Thomas Verstraerten, Mark or David Geier or Amy Holmes for the years you specified.

    Now go away and play. The grown-ups are talking.

  2. I’m guessing “Leo Kanner” is flacking for Son-Rise, now?

    Alison Davies was a Frag X carrier, that means she may have been more prone to anxiety and had her own disability to deal with. She also was a single mum and may have felt like no one would marry her again, knowing that she was a “carrier”… her situation was very complicated and very sad, for her, no doubt. I don’t think she was in her right mind when she encouraged her son to jump from the bridge and jumped herself. They did have friends and family who cared, but sometimes that sort of care doesn’t seem like enough. At any rate, it’s not like Ms Davies could have afforded stinking Son-Rise treatment for her son. If they had offered it to her for free would it have promised miraculous changes for a school aged boy with Frag X? Not likely.

    It’s sickening to me how Raun goes through the UK every year pitching his family con-job like a travelling salesman. It must be profitable though, he keeps going back.

  3. I read your site with interest for I have an interest. I have two sons and a daughter and both my sons are autistic , one was profoundly so. You may feel that Raun Kaufman is another “snake oil healer” but I have to tell you that for us Mr and Mrs , family average in England UK,the Son Rise programme has changed our lives. You may talk of the essential patronising and money orientated view of Option but if you ever attended one course or talked frankly with the people involved you would not be able to sustain your view.I do not know why you continue to pour scorn on the Son-rise Programme, I have no axe to grind, my sons and I live the reality of our lives on a daily basis- I have an 8 year membership in the Autistic Spectrum.I celebrate my sons individuality and am not in the business of “recovery”, but you are writing off a truly remarkable programme with the minimal of understanding. You may like this or not, but the fact is that Raun Kaufman speaks for the Autist not against, dispute it as you will, unless you come along on a start-up programme, you cannot really speak with authority. PS It is heavily charitably subsidised by the Caudwell Foundation in the UK and get real, it is as expensive as anything is in our western world.The Autism Treatment Center of America has registered charitable status.
    “Camille” may well ponder the fact why Raun keeps coming back – what by the way is Camille’s suggestion as to how Autisitic children and their families might move forward on living in this world?

  4. Clare
    I am not criticizing the Son Rise programme per se. I took issue with a press release that exploited the death of Katie McCarron against the expressed wishes of her family.

    I questioned the accuracy of the statistics and the inconsistency in the use of terminology that may have misled people into believing that we are in the midst of an autism epidmic with hundreds of thousands of severely affected individuals.

    Regarding the snake oil comparison, the press release is quite clear that the prognosis for autism is hopeless unless people follow the Son Rise method and then, “Parents and professionals will learn how to help their children, for the first time, to begin to cross the bridge from their world to ours.” If Son Rise is the genuine article it should not need to sell itself as if it were snake oil.

  5. Yes but Mike. Come on. As a very concerned father of an autistic son, I am pouring over a lot of information and I too noticed right away the dates of your references. Do you really want us to base our thinking on information from the 60s and 70s!?

    It’s best to stick to your point about exploitation which may well be the case. But it’s pretty clear to this first time reader that your rippin’ into Raun and Sun-rise.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s