Action Against Artism?

There is a very interesting and enjoyable discussion about art and autism on Kevin Leitch's Left Brain/Right Brain blog.After reading that I discovered this item from The Scotsman courtesy of the NAS press office. (One of the perks of being a member of the NAS Council is that I get a daily list of autism related news stories.)

DOES AUTISM MAKE YOU A BETTER ARTIST?

AMONG those given MBEs in this year's New Year Honours was the artist Stephen Wiltshire. A big success, his immensely detailed cityscapes fly off gallery walls. He is also autistic. But are the two connected?

Ioan James, a professor of geometry at Oxford, is writing a book investigating whether Andy Warhol, among other influential figures in the arts, mathematics and history, suffered from Asperger's Syndrome, a mild form of autism. His use of grid patterns, paralysing shyness and tendency to repetitious behaviour may be clues that he did. Michael Fitzgerald's The Genesis of Artistic Creativity: Asperger's Syndrome and the Arts suggests it could also be added to Van Gogh's list of ailments. Likewise, LS Lowry. Seems that Scottish painter Peter Howson, who realised as an adult he was an Asperger's sufferer, is in good company.

James has said characteristics associated with creativity - "perseverance, perfectionism, disregard for social conventions and unconcern about the opinions of others" - are remarkably like those associated with Asperger's."

The references to "suffering from Asperger's" and AS being "a mild form of autism" do grate a little. But this is a piece of journalism so I will pass over these inaccuracies in order to deal with a much more serious misrepresentation.

In Edinburgh, meanwhile, the work of three remarkable young artists is at the Atticsalt Gallery, 50 Thistle Street North East Lane, until next Saturday, to raise funds for the Autism Treatment Trust. Lloyd Allanson, 10, Danielle McLernon, 14 and Louis Larochelle, 9, all suffer from autism to different degrees and all have produced artwork with an unusual degree of attentiveness and maturity.

I am not surprised that Lloyd's paintings show an unusual degree of maturity. After all they were painted by his mother, albeit based upon his drawings, done when he was five.

Exhibition organiser Lorene Amet, Lloyd's mother, says: "A lot of people have autism. Are they more talented than others? I don't think you can be sure. I think their work stands out because it's different, they perceive the world differently."

Lloyd's mother wants to stop people like Lloyd from perceiving the world differently. She is a DAN! practitioner and practises on her son. The exhibition is a fundraiser for a new charity set up by Action Against Autism. All the proceeds from this exhibition are going to fund a treatment centre offering biomedical interventions. Lorene Amet is chair of the Autism Treatment Trust and a director of Action Against Autism.

I expect she will be quick to point out the mistake by the Scotsman in attributing her paintings to her son and look forward to reading a correction in the Scotsman.

I do not expect the members of Action Against Autism to question the morality of taking the artistic endeavours of autistic children and using them to raise money to "cure" the altered perceptions that were responsible for artworks that show "an unusual degree of attentiveness and maturity."

The Pressure on Parents

Although I am harsh on the purveyors of false hopes who prey upon the fears of parents of autistic children it is important to remember that those fears are real. They may not be justified. They may be fuelled by the media and unscrupulous researchers and clinicians. But they are real nonetheless and parents need help in dealing with them.

I offer this excerpt from a book I wrote 6 years ago while recovering from my own mental breakdown as a way into analysing parental responses. I welcome any better ideas.

A. Parental responses - the worrier

The worrier parent cannot get over their guilt. They want to know why their child is autistic. Was it their fault? Is there a cure or therapy that can help their child that they are not trying? Whenever the media trumpets another “breakthrough” in the treatment of Autism it adds to the pressure.

They come across the wealth of anecdotal evidence that diets, vitamins and different drugs can help some children with some aspects of their condition. Of course, friends and relatives are always hearing about miracle cures and interventions. These are usually very expensive and only obtainable on the other side of the globe. So, why aren’t you mortgaging your other children’s college fund and your pension to cure your child? Don’t you love him enough? Or perhaps he is not really that autistic? Grrrr!

If you are the parent of a child with severe eating or sleeping problems, destructive or self-injurious behaviours, tantrums or prolonged periods of distress, and you are getting little or no professional support or advice that actually works for your child then you will try anything. Without serious research into the worthwhile interventions they have to bid for credibility alongside the shysters and hucksters promoting their snake oil remedies.

The National Autistic Society has published a booklet which describes over 40 different approaches; some are dietary, medical or educational and some are just plain weird. Most are worthy of attention (NAS 1997). But there are very few people “on the ground” to whom parents can turn for guidance. In the UK parents who approach their local health providers for “alternative” therapies are often viewed as cranks. In the USA these treatments are more widely available if your health insurance is prepared to pay. So the worried parent has to face the prospect of confronting an unsympathetic medical establishment or living with the guilt that they are not doing enough for their child. This sort of dilemma can lead to passivity, resentment and bitterness directed at more assertive parents who should be your natural allies, thus increasing your isolation.

B. Parental responses - the warrior

The Warrior represents the other side of the coin. They are going to get the best there is for their autistic child. They have their rights and if something is not done someone is going to pay. There is nothing wrong with trying to get the best there is for your child so long as you do not lose your way. My own trajectory from worrier to warrior was fuelled by guilt at not being assertive enough and then overcompensating by taking up a completely adversarial position. With hindsight it sometimes appears that I was less concerned with what was right for my son than I was with the desire to get the faceless bureaucrat whom I blamed for all our grief.

C. Breakdown and Conflict

It is easy to see how this can happen. The parents notice something about their child. Their fears are dismissed. They read an article about Autism and recognize their child in the article. They research the subject. They pester the authorities. They become a problem to be dealt with while the child’s needs are ignored...

D. Partnership

Both warriors and worriers can become overprotective towards their children. Because of this the children may learn to define themselves by their condition. One example might be the child with a learning disability who could manage to achieve a reasonable level of independence in adult life. But if given a sick role to play they may learn to play it to perfection and always be dependent on others for things they ought to be capable of themselves.

It is easy to see how this could happen. The parent is told their child has a problem but receives very little support in coping with the news. For some the child becomes their permanent baby that they will love and look after for ever and ever. Such parents are very loving but can impede a child’s progress by doing everything for them and spoiling them completely.

These children have a genuine difficulty and parents who want was is best for them. The parents just need some guidance and reassurance. No professional is allowed to be alone in a room with children until they have completed their training. Parents of children with special needs are expected to get by on their own with no training. As primary caregivers we ought to feature prominently in the in-service training budget of every agency that deals with autism. Because if we cannot cope you are going to have to train someone else to replace us and pay them as well.

Often aspects of both warrior and worrier are present in the same person at the same time. We are used to living with contradictory ideas. It is only when the contradictions become too acute that breakdown occurs and many parents do experience breakdowns.

So those dealing with parents need to be aware that we have special needs as well. Health and education officials ought to develop a ‘bedside manner’ and be gentle and supportive. Above all what we need is honesty. If the provision is not there because of cuts in government expenditure and the authority cannot afford what is best for my son, tell me! Do not pretend that you can meet his needs within existing provision when it is patently obvious that you cannot.

Parents do want a partnership with professional agencies to help our children. If the system needs a shake up we can do the shaking. We are not constrained by professional etiquette. We can court publicity in ways that might be inappropriate for public servants and state employees. Both worrier and warrior can be positive if we worry about the things that matter and go to war against the right targets. We can be your friends in low places, humbling the mighty.

So, to all who have dealings with the children with Autism I make this appeal.

Take the parents into your confidence, as we take you into ours by entrusting you with our children’s future. Do not patronise us, dismiss us or attempt to pigeonhole us. We may not always know what is best for our children. But, rest assured, we always want was is best for them.

Taken from "Learning to Live with High Functioning Autism" by Mike Stanton.

Going Through the Motions

What are you to do if you operate on the fringes of evidence based treatments for autism? You feel you are at the cutting edge but the medical establishment do not support your theories and treatment protocols? Well, you could go in for double blind placebo controlled studies and publish in peer reviewed journals. After all, one of the biggest complaints from proponents of biomedical interventions is that these sort of studies have not been carried out properly for the vaccines they blame for their alleged autism epidemic.

And you do not have to believe their claims about vaccines in order to sympathize with objections to the routine prescribing of powerful psychiatric drugs to autistics of all ages. Even if you question the evidence, nobody was ever harmed by dropping dairy or gluten products from their diet. But where is the evidence for Ritalin, SSRIs, Risperidone etc? We know they can have severe side-effects and are not licenced for the treatment of autism. APANA or Autistic People Against Neuroleptic Abuse has long campaigned against the misuse of such drugs as a substitute for offering proper support to autistics.

So it is surprising that mega doses of vitamins, chelating agents, anti fungal treatments etc. are embraced so enthusiastically by those who would rightly condemn the drug companies if they introduced new treatments on the basis of anecdotal evidence, individual case studies and small scale trials. And then they are surprised when their evidence is rejected. Action Against Autism(AAA) should have been chastened by their recent experience at the Cross Party Group on Autistic Spectrum Disorder

"Mr Welsh (Chairmen of AAA) noted that 50% of people with autism have inflammatory bowel disorder and questioned why this has not been brought forward.

Dr McClure stated that there are concerns over the presentations children make and that more evidence is needed. The SIGN group has followed a process and procured the evidence it has. It may be that studies mentioned by Mr Welsh do not meet the quality of evidence that the group is working with. He added that he would be happy if Mr Welsh investigated this.

Mr Welsh stated that at a recent conference scientists from the USA and France were asked if autism was treatable to which they replied ‘yes’. Mr Welsh asked for Dr McClure’s opinion.

Dr McClure replied that no-one in the SIGN group would inhibit research which would find answers to help children. Part of the process is about safety on the basis of evidence. He stated that in his work he, personally, prescribes to the principle of ‘do no harm’. Dr McClure remarked that the problem with the studies to which Mr Welsh refers is that they do not meet the quality of evidence threshold. That is not to say that he is not interested in these inquiries but he would like there to be more research carried out properly."

But never mind that your research does not meet the quality of evidence threshold. Never mind about peer review. Why not go for parliamentary review instead? Murdo FraserMSP, one of two parliamentary advisors to Action for Autism has proposed the following motion.


S2M-3487 Murdo Fraser: Autism-Specific Medical Treatment Centre—That the Parliament congratulates the charity, Action Against Autism, for bringing to Scotland, at the Royal College of Physicians, six of the world’s leading medical doctors practising in the field of autism, who articulated to delegates from over ten countries that autism can be treated by the introduction of safe and proven interventions for the often painful and distressing underlying medical conditions which courageous children with autism are experiencing, and believes that the Scottish Executive should give consideration to the establishment of an Autism-Specific Medical Treatment Centre in Scotland to address the needs of the 3,400 primary school children and others who have been identified as suffering from this devastating condition. R

Who are these "leading medical doctors practising in the field of autism?"

• Dr Neubrander
• Dr Nataf
• Dr Skorupka
• Dr Aitken
  
• Dr McCandless
  
• Dr Haley
  

I suppose 4 medical doctors out of 6 is not bad. But "leading?" Well they are not on my A List.

Another MSP has proposed a similar motion asking the Scottish Parliament to "recognize the expertise" and endorse "credible evidence" that has no credibility amongst mainstream scientists and doctors.

S2M-3422# Carolyn Leckie: Treating Autism—That the Parliament congratulates Action Against Autism for organising the pioneering conference, "Autism is Treatable", which took place on 15 October 2005; recognises the expertise demonstrated by the international scientists and medical professionals who led most sessions, especially since their work has been developed within a climate of hostility, and believes that the credible evidence of varying levels of recovery from the characteristics of autism in medically-treated US children should not be dismissed and that further efforts to explore the bio-medical model of autism in Scotland deserve the support of the Scottish Executive and the medical establishment.

Autism does not have to be a devastating condition. There is plenty that would help.

• Early identification and diagnosis
  
• Support and training for parents in how to raise their autistic child
  
• Safe and supportive school environments free from the bullies who tried to wreck my son's life
  
• An end to the isolation of adults who do not fit the current service models of learning disability and mental illness
• A benefits system that recognized autism
• Support for housing and employment
• Care for the autistic elderly

It is lack of these essentials that devastates lives and we need Action FOR Autism in order to get them.