This letter has been mailed to firstname.lastname@example.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?
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.