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.

Jenny McCarthy circumcision and autism

Thank you Jenny McCarthy. Since I wrote about you my readership has doubled. That is still not enough to offset the harm that will ensue if even a tiny fraction of your TV audience swallow your message that the MMR vaccine caused your son’s autism. But here is a chance for you to make amends. Have you heard of the theory that circumcision causes autism? I only ask because in an earlier book you describe how you had your son circumcised.

“If you don’t know what an uncircumcised penis looks like, you will once you baby boy is born. When I saw my son’s for the first time, I thought it looked kind of like a wrinkled french fry. I had the hardest time knowing that I would have to be the one to tell the doc, “Go ahead.” How could I do anything to cause him pain? But I did, and my main reason was that I wanted him to have a pretty penis.”

Way to go, Jenny! Cosmetic surgery on your infant son’s penis. The evidence for this causing autism is every bit as strong as the evidence for vaccines. So, if you could just mention this on your next TV appearance, it may not save any children from autism, but it may persuade some parents to spare their child from painful and unnecessary surgery.

Another window opens

Early diagnosis of autism brings obvious benefits. It means you can make an early start to understanding your child and meeting their needs. Early intervention is generally agreed to be A Good Thing. Some people take it further and argue that early intervention is The Only Thing. There is supposed to be a limited window of opportunity while the young child’s brain is still developing. During this time intensive behavioural interventions are supposed to have the best chance of success. Success in this context usually means recovery or normalization in which the child becomes indistinguishable from their peers and loses their diagnosis.

There are several reasons to question this scenario. E.g. the window is larger than we think. Brain development continues into adolescence. People who suffer accidental brain damage often manage to regain lost functionality despite loss of brain cells. Brain cells can regenerate, even in adult life. How this relates to autism is not clear cut. But if our brains can change and develop throughout our lives we should expect change and development in the brains and lives of autistic people as well.

I have seen this in the children I teach.  Severely autistic 3 year olds in our nursery  often make amazing progress as they develop and mature. Their degree of cognitive impairment seems a more important predictor of future outcomes than the severity of their autistic symptoms. I see regression as well, especially in the teenage years when the pace of change can trigger all sorts of crises.  It is often temporary, with balance restored by the time they leave us as young adults.

All of this is anecdotal – the impression gained from a quarter of a century in special ed. But a recent study, Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder,   provides data to support my impression and extend it into adult life.

Paul Shattuck and his research partners studied a group of 241 autistic people over 54 months. It was a varied group, ranging in age from 1o to 52. The mean age was only 22 so the sample must have contained proportionately more younger than older autistics. The abstract refers to subjects with an autism spectrum disorder and so presumably includes subjects across the spectrum. We learn that 69 per cent have some degree of mental retardation, which suggest there were rather more people with Autistic Disorder than with PDD-NOS or Aspergers.

According to the abstract and the press release from George Washington University the significant findings were that:

  • Although many individuals’ symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors, and there were significant improvements in mean levels of symptoms.
  • Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time.
  • Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time.

Why some people improve is being investigated as part of the ongoing study. But as it stands this is tremendous news. It means that parents of children who get a late diagnosis have not necessarily missed the boat. Parents of newly diagnosed children also do not need to rush into anything. The window is bigger than you think. Take time to gaze into the window. Learn about your child and choose wisely from the range of options before you.  

This is also good news for autistic adults. The older ones made the most signficant gains. Growing up might be hard but being a grown up is better.

I only hope that the numpties behind anti-vaccine outfits like Safe Minds, Generation Rescue and NAA do not resort to the same lies that they heaped onto Paul Shattuck the last time he published a piece of scientific research that contradicted their prejudices.

Jenny McCarthy and autism quackery

Thank you, Joseph for posting these links to blogs on Jenny McCarthy

  • After Jenny and Oprah (LB/RB)
  • The New McCarthy-ism (LB/RB)
  • Jenny McCarthy and Oprah Winfrey: Two crappy tastes that taste crappy together on autism (Respectful Insolence)
  • JB Handley on Jenny McCarthy (Autism Street)
  • Sorry Jenny McCarthy, you don’t speak for me (MommyHood)
  • Jenny McCarthy and the problem of illusions (Autism Diva)
  • Jenny McCarthy has written a book, Louder than Words: A Mother’s Journey in Healing Autism. The book is receiving widespread publicity in the USA because of McCarthy’s celebrity status as an ex Playboy centrefold who turned to a career as an actor and a writer. So it is no surprise that her book is expected to climb up the best seller lists.

    We live in a world where celebrity endorsement is often given more credence than evidence based judgements. Talk About Curing Autism (TACA), a Californian support group, which believes that autism is caused by thimerosal in vaccines and is reversible using biomedical interventions, has just recruited McCarthy as their official spokesperson. In reacting against what one commenter on Left Brain/Right Brain referred to as this  “celebritization of expertise,” it would be just as easy to discount McCarthy’s views because of who she is; just as easy and just as wrong.

    I do not blame McCarthy for taking advantage of her celebrity status to get her message across. Having done so, we should critique her message rather than her status. McCarthy’s most important point concerns her injunction to, “Listen to your instincts. Follow your heart.”

    “Because a child with autism has their own unique issues, it really is important that you use your mommy instinct when dealing with all the types of therapy that are available to you.”

    When I read of children being abused or killed during so called ‘therapies’ while the parents stand by or even participate, I often wonder how many of them have been persuaded to suppress their parental instincts by feelings of powerlessness induced by the mystique that often surrounds autism reinforced by the status of the ‘expert’ they are consulting.  Every parent should be encouraged to follow their instincts. If it feels wrong it probably is wrong.

    McCarthy goes on to say;

    “When you meet your DAN! doctor you will get thrown so much information, so many different choices and things that you can choose. I did not want to make Evan a guinea pig. I wanted to go inside and listen to my instincts on what was most necessary and what made sense, type of treatment for Evan.”

    When I go to the doctor I expect him or her to give me the medical advice. If there are choices to be made I expect guidance. If McCarthy is saying that DAN! practitioners hit you with this great wad of information and you are expected to evaluate it yourself and make your own treatment choices, then this is not empowering parents or respecting our instincts. This is health care professionals abrogating their responsibility to offer the best advice. Instead they are expecting us to evaluate the evidence and make the treatment choices. This must prove very handy if things go wrong.

    Follow your instinct. Listen to the experts. Can we do both? Yes. You always follow your mommy instinct, or your daddy instinct for that matter, to keep your child from harm. That is a natural reaction. But there are times when you have to be proactive. When reflecting on the evidence or evaluating conflicting theories you have to rely on your intellect rather than your instinct and remember that Google is a synonym for “search” and not “research.” Otherwise you may finish up like Jenny McCarthy, lurching from new age mysticism to quack science without a second thought, or even a first thought.

    Prozac treatment for autism

    In yesterday’s Guardian I read that

    Thousands of children with autism in the UK could benefit from taking drugs such as Prozac, a US psychiatrist said yesterday.

     Professor Eric Hollander, from the Mount Sinai medical centre in New York, said a third of children diagnosed in the United States were on antidepressants and British children were being under-treated. Although the drugs are not licensed for autism, he said there was evidence they could reduce its symptoms, enabling some children to travel on public transport or go to mainstream schools.

    It is argued that those drugs may help autistic children, who are obsessed with routine and get distressed if the unexpected happens.

    Doctors in Britain have been warned not to prescribe antidepressants for children and adolescents following evidence that the pills may make them become suicidal. Research Autism, a branch of the National Autistic Society, warned that such drugs had worrying side-effects in autistic children. “We advise caution,” a spokesman said. “There has not been enough research to be able to give a clean bill of health to this treatment.”

    Professor David Healy, whose research led to the warnings, said: “These drugs have been around for the last 20 years and if there really was any substantial benefit it would have been found a long, long time ago.”

    Prozac was the first “lifestyle” drug. It can be a lifesaver for people with a major depressive disorder but is also used by  well people who would like to feel “better than well.” Widespread use by people with minor problems or no problems at all has fostered the illusion that prozac is a totally benevolent “happy pill.” However Prozac is one of a powerful class of psychotropic drugs, selective serotonin reuptake inhibitors, (SSRIs) that can have dangerous side effects. Sarah Boseley, who wrote today’s piece, wrote another story about Prozac and similar SSRIs causing suicidal thoughts in some people.

    Dr Healy says the results of the research should be a warning to GPs prescribing any SSRIs. “They may not all be equally the same,” he told the Guardian. “But the risk holds for the whole of the group. Generally the findings would indicate that women and children and those who are least ill may be most at risk.”

    Prozac  now carries a “black box” warning.

    Prozac is the only SSRI licensed for use with children in the UK following a ruling by the EMEA, and then only for children over the age of eight with moderate or severe depression who have failed to respond to psychological therapies alone. It should only be given in conjunction with continuing therapy and reconsidered if there is no clinical benefit after nine weeks. There are also questions arising from animal studies about the long term effects of Prozac on emotional behaviour, growth and sexual maturation which require further research and careful monitoring in children taking the drug. So it is unlikely that it will be widely prescribed for autistic children here.

    But what about the one in three autistic children in the USA? How many of them are so severely depressed that they need to take SSRIs? How many of them are actually the victims of stress induced by unreal expectations and lack of understanding? Professor Hollander touches on this in an interview with Medscape.

    There are some controversies about whether autism — for example, Asperger’s disorder — is just an alternative way of being and whether trying to get rid of target symptoms is not allowing certain patients with Asperger’s to fully express who they are.

    My sense is that it’s pretty clear that if we can reduce certain target symptoms, then people will have significantly less distress and their overall level of functioning will improve.

    I am not anti-drug or anti-psychiatry. For two years Prozac was my lifeline. But my depression did not begin with a chemical imbalance in my brain. That happened because of the cumulative effect of many external factors, not least of which was the stress involved in a long and unsuccessful battle with the authorities to obtain appropriate provision for my autistic son.

    If someone is crying we do not give them a pill to dry their tears. We find out why they are crying and try to remove the source of their unhappiness. When it comes to autism we should begin by putting more effort into fixing the situation that these children and adults are often forced into and not automatically assume that they are the ones who need fixing and that we have the wherewithal to do it. If we can identify and alleviate sources of stress in the lives of young autistic children we may reduce the likelihood that they will need medication as they get older.

    Landmark parental choice ruling over autistic boy

     This comes from the Foundation f0r People with Learning Disabilities website. Thanks to Norman from the NAS for sending me the link. In the UK we often get inter-agency disputes over funding issues. Health, education and social services are all funded out of the public purse but they guard their budgets ferociously. I recall a case involving a former pupil of mine in which the health authority was resisting a three way split with education and social services to cover the cost of a residential placement. They insisted that they would only pay for health care costs. The other agencies were glad to agree when it emerged that health care accounted for the majority of the costs!

    These disputes are particularly galling when social services and education argue over funding as both are departments of the same local government body. This may be changing as child and family services and local education authorities are increasingly merging with each other. Meanwhile judgements like this set a welcome precedent for parents who argue their case for making the best use of the public purse free from inter-departmental rivalry and cost cutting.

    The mother of an autistic boy with special educational needs won a groundbreaking ruling in the High Court today which could give greater weight to parental choice of schools for disabled children.

    Solicitors for the family welcomed the ruling, saying it would provide “a more holistic approach” to children’s services.

    The case arose after the London borough of Lewisham, the local education authority (LEA), identified a day special school as suitable to meet the needs of “O”.

    O, who cannot be named, has complex and severe learning difficulties.

    But his mother wanted the 12-year-old to board at a special school maintained by another LEA.

    Her lawyers challenged the stance taken by Lewisham education chiefs before a Special Educational Needs and Disciplinary Tribunal(SENDIST).

    They asked that O’s statement of special educational needs be amended to reflect her preference.

    But the tribunal decided in February this year that the school chosen by Lewisham, where O became a pupil in September 2006, could meet his educational needs and, essentially, that the more expensive residential place could not be justified.

    Today Andrew Nicol QC, sitting as a deputy High Court judge, allowed the mother’s appeal and said the tribunal had erred in law over the question of cost.

    The tribunal found that the difference between the day school and boarding school was around £20,000 a year.

    It said that, although the residential school chosen by the mother was a very good school, it would be “an inefficient use of resources” under the Education Act 1996.

    David Wolfe, appearing for the mother’s solicitors, argued that Lewisham social services was providing £16,588 worth of respite care for the mother while O remained at day school.

    That would not have to be provided if O went to boarding school, and the real difference in costs to Lewisham would be less than £3,500 a year.

    Mark Roscoe, for Lewisham, argued that the Education Act did not allow the tribunal to take account of the social services expenditure as it was not an education department cost.

    But today Judge Nicol disagreed and held that it was a relevant cost under Section 9 of the Act and amounted to “public expenditure” which could be taken into account.

    Allowing the mother’s appeal, the judge urged that the tribunal should consider the case afresh as soon as possible.

    Later the family’s solicitor, Emily Gent, of the firm Maxwell Gillott, said the ruling was significant because parental preference has generally been denied in SENDIST appeals “where a tribunal accepts that a cheaper adequate alternative that meets educational need is available – even if there are other costs to public bodies which could be saved if the more expensive school place is chosen”.

    Ms Gent said: “The tribunal, and local education authorities, can now take into account money saved from other sources that would be used to meet non-educational needs.

    “This encourages a holistic approach to provision of services to children in line with the Every Child Matters framework constructed after the Climbie inquiry.”

    Release Date 11/09/2007

    Source Press Association

    shades of grey on the autistic spectrum.

    The discussion at the Guardian on curing autism that I blogged yesterday threw up the old chestnut that we have a severe form of autism where children are non-verbal, prone to self injury and violent tantrums and not even toilet trained. On the other hand we have a mild form, known as Asperger Syndrome, where quirky individuals struggle with social skills but are basically OK. Unlike the severely autistic kids, they don’t need a cure. But because they don’t need it they want to deny it to the kids who do need it.

    This argument assumes that we have this clearcut break between the two forms of autism. It also asumes a worse case scenario for all those with severe autism and that life is a peach for the mildly affected asperger types. Reality is, of course, somewhat different. For a start autism is a spectrum disorder. It exists on a continuum with no clear cut dividing lines. Secondly, it is dimensional rather than categorical. People of a certain age [over 50s like myself] will remember the old stereograms with a simple bass/treble control. It was either/or. Then we got music centres with graphic equalizers where you could independently manipulate half a dozen individual variables. This serves as an analogy for autism. Once upon a time we thought it was either/or. Now we know it is a lot more complicated than that.

    I get to see this all the time. I teach in one of the five designated special schools in my county. Our special schools are for childen who used to be described as retarded but are now described as having severe and/or complex learning difficulties. Many of them are also autistic. Since September 2004 I have had 43 children in my class. Out of 43 pupils 18 are autistic. My county has a very parsimonious record for funding out of county residential placements; 10 children at the last count. So it is safe to assume that my class records account for most, if not all, of the severely autistic 11 and 12 year olds with learning difficulties in my school’s catchment area.

    So what do these guys look like? I did a quick survey, dividing them up into autistic [ASD] and non-autistic [NT]. then I counted up 5 categories of behaviour.

    1. toileting
    2. language
    3. behaviour
    4. self injury
    5. none

    Some children feature in more than one category. Those in ’5. none’ still have severe cognitive impairments.

    bar-chart.jpg

    Three things strike me from this highly anecdotal ‘research’ of mine.

    1. The behavioural markers that come up so often in popular debate; toileting, speech, tantrums and self injury; are not more prevalent in autistic children than they are in other children with cognitive impairments. [And, curiously, these popular criteria for autism are not the same as the official criteria of DSM-IV and ICD-10.]
    2. A significant minority of kids with ASD and almost half of the kids without autism had no severe problems in the four areas of toileting, speech, behaviour and self injury.
    3. Something that is not obvious from the chart, but some of the most challenging pupils in behavioural terms were also  amongst the least impaired in other areas.

    OK. This was a small sample and lacked a control group. If I had done this 5 years ago there would have been more self injury amongst the autistics and less with good languge skills. But I stand by my belief that the negative outcomes that are so vigorously promoted as an inevitable adjunct of autism are just as likely to be related to level of cognitive functioning. Even then, they are are not typical of either autism or of severe mental retardation. There are shades of grey on the autistic spectrum.

    Autism … it’s not what you think