Autism Parents and Celebrity Endorsements

Now that the Jenny McCarthy bandwagon appears to be slowing down it is as well to remember that lots of parents are writing intelligent, heart warming and thought provoking accounts of their experience in raising a child with autism. Lacking McCarthy’s dubious claims to fame and fortune, not many of them get the chance to publish a book or be courted by Oprah or People Magazine. These parents are all intervening to help their children. But unlike McCarthy they do not subscribe to the view that,

“……as long as autism is considered a mental disorder or genetic disorder, then the list of referral specialists is quite predictable: neurologists, geneticists, behavioral pediatrician, psychiatrist, and therapist for mom, since most of the issues are her fault anyway.  But, you know what, despite all the evaluations and platitudes, the child somehow improves only minimally, if at all.Autism, as I see it, steals the soul from the child; then, if allowed, relentlessly sucks life’s marrow out of the family members one by one…….”

Nice, eh? A typical rant from one of mercury malicia? Not exactly. It is part of the forward to McCarthy’s book. The author is Jerry Kartzinel MD, the medical director of paediatric services at Andrew Wakefield’s Thoughtful House Clinic in Austin, Texas. Their website is down at the moment because it has exceeded its bandwidth. I would like to think their server has been overwhelmed with angry parents seeking to complain about Kartzinel’s dehumanizing comments about autism. But it is more likely that the Jerry and Jenny media roadshow has sent them a whole new raft of hopefuls looking for a magic cure.  There is a lively discussion about Kartzinel’s remarks over on Left Brain/Right Brain.

But back to autism parents.

As well as the members of the autism hub there are lots of others out there. Thanks to McCarthy for bringing these to my attention.

The Quirk Factor: Resistance is Futile

Mommyhood – the Adventures of Kim and Alex 

And here is another parent blog that is well worth reading and seems to be a McCarthy free zone. 🙂

Mother of Shrek

Celebrity Endorsements

If we go beyond the mutual backslapping of Kartzinel and McCarthy, it is true that there are so many books, methods and programmes out there that we often rely on other people’s endorsements to guide our choices. If an acknowledged expert in the field is quoted on the dust jacket or writes a favourable review it can only help sales. We also have autistic celebrities, who may not be autism experts but speak with some authority because they have written and spoken about their autism in ways that connect to the experience of others on the autistic spectrum and their families.

Two of the most famous examples are Temple Grandin and Donna Williams. Sharon has blogged about a recent lecture in Belfast by Donna Williams. Sharon noted all her points of agreement with Donna Williams.

As the lecture progressed however, I was noting more things that I didn’t agree with. First she spoke about cranial sacral therapy, saying it benefited her, which I don’t doubt. She suggested it could benefit other autistic people too, and again, maybe it could. But as a technique, there’s no evidence of any effectiveness and the claims made sound rather like, oh what’s that word…quackery.She also mentioned all sorts of medical problems, and again either stated or implied (I can’t remember) that these are common place in autistic people. She mentioned her own issues; salicylate intolerance, immune deficiency, gluten and dairy intolerance. She recommended that anyone thinking that their children may be affected by such issues, should investigate GF/CF diets, low sugar and low salicylate diets. She referred to the ‘leaky gut’ theory, stating that for many autistic people, gluten and casein can act like opiates. In fact, when one woman asked for advice on her son’s habit of head banging, Donna again mentioned this, saying this is sometimes a symptom of what she termed ‘brain fog’, that is, undigested enzymes crossing the blood-brain barrier.What was missing from all these discussions of medical issues, both in the main lecture and while answering questions from the audience later, was any mention of doctors or dietitians. Donna mentioned naturopaths, chiropractors, reflexologists and osteopaths. These are not practitioners of evidence based therapies.

Sharon wrote another post about the sponsors of Donna Williams’ lecture – P2P Autism – who are trying to spread the DAN! message in Ireland. Donna Williams appeared in the comments section to defend her position and  Sharon has another post in which she deals with all Donna’s points.

The last time I heard Temple Grandin speak she ended her talk with an endorsement for the ARI website.  The website does contain an interesting FAQ by Temple Grandin about sensory sensitivities and aspects of autistic behaviour. It also contains a guide for new parents co-authored by Temple Grandin, Bernard Rimland, Stephen M. Edelson and James B. Adams. The only significant point of difference between them is that Temple Grandin supports the selective use of psychiatric medicines in older children and adults.

The various topics covered in this overview paper for parents of young autistic children represent, for the most part, a consensus of the views, based on research and personal experience, of all four authors.  However, the authors differ in their opinions on the role of psychoactive drugs should play.  We will present you with the conflicting opinions, so you can decide for yourself.

Grandin has a relatively accepting position on the use of psychiatric medications in autistic children.  She feels  that it is worthwhile to consider drugs as a viable and useful treatment.  Rimland and Edelson, on the other hand, are strongly opposed to the use of drugs except as a possible last resort, etc.  – They feel the risks are great and consistently outweigh the benefits.  Adams has an intermediate view. 

But regarding the DAN! protocol (safe and innovative ) and ABA (most effective ) they were all agreed. On the question of vaccines they were not fully committed.

The possible causative role of vaccinations, many of which were added to the vaccination schedule in the 1980’s, is a matter of considerable controversy at present.

That was then.  ARI is firmly committed to the autism/vaccine hypothesis now.

Autism is a complex disorder with many contributing factors. While there are many theories as to the cause of the increase, ARI believes environmental factors—including unprecedented exposure to toxic substances and over-vaccination of infants and young children—are the key factors triggering this devastating epidemic. Emerging research supports this fact, making it clear that autism is a whole-body illness triggering a biological brain disorder and ARI continues investigating various possible causal factors.

Kenneth Bock fully endorses the vaccine hypothesis, as he makes clear on his website. He is also a big wheel within ARI/DAN! who speaks at international conferences and is president of the American College for Advancement in Medicine. ACAM is actually a trade organization for chelationists and other ‘alternative’ health practitioners. Bock has written a book outlining his views which received this glowing testimonial

“An easy-to-read commonsense guide to beneficial biomedical treatments such as diets and supplements. Dr. Bock clearly explains the different options and provides case histories of treatment successes.”
–Temple Grandin, author of Thinking in Pictures

Both Donna Williams and Temple Grandin have added greatly to our understanding of autism from their autobiographical accounts and their public lectures. But their support for the idea that alternative medical interventions can help  some childen and adults gives credibility to the pseudoscience that informs these interventions, especially in the eyes of parents. I think it is time to challenge them on this. Thank you to Sharon for making an excellent start.

We have to move away from faux-science. It is ironic that the alties denigration of the core values of real science is only matched by their desire to take on the peripheral trappings of science. This ‘wannabe’ desire for respectability, while denigrating actual, existing, respectable science can confuse non-scientists. This may be their intention. It seems to have worked with  the Autism Society of America. CEO Leo Grossman has recently endorsed a book by Bryan Jepson, one of Jerry Kartzinel’s partners in crime at Thoughtful House.

Lee Grossman, parent of an autistic child; President and CEO, Autism Society of America
“The new PDR of autism for parents and physicians. An important book that everyone dealing with autism must own.”

There is no science worthy of the name to support the biomedical, curebie position on autism. A combination of clever PR and behind the scenes politicking has elevated the biomed lobby to a position beyond their station. It is time to prick the bubble.