Ms Williams is a talented, energetic and engaging speaker. The lecture title was 'Autism as a Fruit Salad' and was outlined on the poster;
What if Autism Spectrum Conditions are the combined developmental effect of combinations of things and not single conditions? What if they are ‘cluster conditions’? What if an Autism Spectrum condition is not like a piece of fruit but more like a fruit salad? The combinations in those fruit salads might differ from person to person and, so, the best collection of approaches, treatments and adaptations would differ too. One-size-fits-all-approaches that assume they address a single condition would be limited. But, if we could identify the ingredients in each person’s ‘fruit salad’, then we might have the basics for an individualised program based on the systems at work for that particular person.
All people with an Autism Spectrum Condition have an ‘information processing difference’ to Non-Autistic people. Commonly though, they may also have anxiety, mood or compulsive disorders and combinations of more 'Autistic’ personality traits, each with their own set of natural motivations and distresses, which may run counter to non-Autistic ‘normality’ and which many non-Autistic people may find as 'odd', 'strange', 'abnormal' or alien as the non-Autistic person's world may look to the person on the Autistic Spectrum!
This lecture will lay out the ingredients commonly found in those ‘fruit salads’ and the very different treatments, approaches and adaptations found useful in reducing the disability issues associated with each so that the abilities can more easily shine through.
As I sat listening and watching Donna talking and gesturing, I wrote down a few points that struck me. I kept nodding, thinking, 'Yes! That's it exactly!' as she spoke about the effect of environment on autistic people and the difference versus deficit model. 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.
In my opinion, medical issues may occur along with autism. Not all autistic people have the medical problems identified by Donna in her lecture, and many non-autistic people do. Whether your child is autistic or not, if you suspect that there's is a medical problem, I think you should go talk to your GP or paediatrician, who will take a history, order appropriate tests, and work with you to find a solution.
At one stage, Donna asked any parents whose children ate tooth paste to put their arms up high, so she could tell them off, since the children are ingesting fluoride, which , she said, is used in rat poison. I restrained myself from calling out the word 'DOSE!' (Actually, I agree that it's a good idea to teach your children to spit out toothpaste, and to use only a small amount when brushing teeth. Duncan used to suck the toothpaste, but spits now. It's just another one of those developmental things.)
Donna also promoted the use of glutamine supplements which is, she said, is a super brain-food. She discussed how it helps her tremendously, and she told how she has seen many autistic children make great progress while taking it, such as saying their first words, or starting to talk in sentences. She addressed a group of secondary school students in the audience directly, asking them if they ever took glutamine to help them concentrate in exams, and recommended that they do just that.
She then spoke about the huge benefits she saw personally on a small dose of respiradol, and again reported that she knew of many other cases where a neuroleptic (though she didn't use that term) helped someone with autism. She discussed how she had been taking expensive immune boosting drugs for years, the same kind, she said, taken by cancer and AIDS patients. However, introducing the respiradol, which she later changed to seroquel, meant she no longer needed the immune boosting medication. She said that though parents are reluctant to use medication with their children, that these can sometimes have great advantages and she encouraged parents to investigate this option. Again, I would have been more reassured if some of the disadvantages of neuroleptics had also been mentioned, and if she had emphasised that these decisions must be made after extensive research and discussion with a doctor.
There was much discussion of autistic 'cat' people versus NT 'dog' people. I wondered if she knew any autistic dog people?!
After the lecture, there was a slide-show of photos of herself as a child (pre-nine years old only!) and as an adult, as well as some of her art, and she sang live. It was very touching.
The questions at the end were all from parents, looking to interpret various 'behaviours' of their children and asking for her advice. I wanted to ask several questions too, but refrained, as my questions were not like any of the others. I was, to be honest, a bit nervous about standing up and querying some of the things mentioned here, and was worried it might be rude to do so. I wanted to ask in particular about the ethical issues of having autistic children take therapies that are not evidence based.
Later, I was looking into some of the therapies she advocated. A search on 'autism and glutamine' came up with the 'Sunderland Protocol' which also refers to many of the other biomedical interventions Donna mentioned. I'm happy to be corrected, but I'm not aware of the evidence in favour of this protocol, beyond the usual anecdotes.
Another hit was to the Holford Watch blog, and a post stating;
Patrick Holford frequently advises people to heal their gut with the use of glutamine. He particularly recommends the value of glutamine for gut-healing in children on the autistic spectrum.Restoring a healthy gut by supplementing digestive enzymes and probiotics is known to produce positive results in autistic children. The amino acid glutamine is especially important in restoring the integrity of the digestive tract. Drinking 5g dissolved in water just before bedtime can help heal the gut.
Some version of that advice appears in a number of the Holford books and websites. Oddly enough, the advice on this topic on Food for the Brain (FFTB) has been modified to indicate that glutamine may be contra-indicated with children with ASD (autistic spectrum disorders), but Holford has yet to update any of his other writings to reflect those changes....
The amino acid glutamine is an important gut healing nutrient but may be contraindicated in autism because some autistics have protein deamination problems leading to production of ammonia which doesn’t mix well with glutamine.
It almost goes without saying that there is no support for the gut-healing, glutamine, autism assumption in the indexed medical journals.
I can say this for sure, I don't need to take advice from Patrick Holford. It appears that to some extent, his recommendations for 'gut healing' in autism parallel Donna's.
Obviously Donna Williams knows exponentially more than I ever will about autism and I do not intend to dispute what she says about her own health and medication. I take issue with some of the advice meted out and personally disagree with that aspect Donna's work. However, the lecture was very good at getting across many positive messages about autism acceptance and working with a person's strengths and favoured learning styles. There was great advice about making simple but effective adaptations. There were moving images and beautiful singing. It was lovely too to be on the company of someone whose work I have read and who is such a respected writer.