Just for the record, my own position is moderate. I have seen neurologists, immunologists, pharmacologists, pathologists in the treatment of my gut, immune and metabolic disorders which showed signs since I was 6 mths old (was dx'd as a psychotic infant at 2 years old in 1965, tested for deafness into late childhood and formally dx'd as autistic in the 90s).
I am VERY AWARE that the PUB MED info is that 20% of children diagnosed with autism have primary immune deficieincy - ie see the Gupta studies (hence 80% do not) and that 20 year studies - Rosemary Waring - have found 60% are salicylate intolerant (therefore 40% not) and 80% can't digest casein and gluten - Paul Shattock (so 20% can).
In each case, the authors have shown irrefutably, that for all autistic children, 20% have primary immune deficiency, 60% are salicylate intolerant and a massive 80% can't digest casein and gluten?! And these have all been verified and reproduced by other studies? And what hypotheses have they presented to account for these manifestations in the physiology of autistic children? I have read the 'undigested peptides, leaky gut and opiates in the brain' hypothesis, but have never read of any evidence to prove this.
Here's a few references wrt autism and GF/CF diets that I just found. They do not show clear evidence of benefits, excepting one which claims that the diet reduced 'autistic traits', whatever that means:
Cochrane Database Syst Rev. 2004;(2):CD003498
The one trial included reported results on four outcomes. Unsurprisingly in such a small-scale study, the results for three of these outcomes (cognitive skills, linguistic ability and motor ability) had wide confidence intervals that spanned the line of nil effect. However, the fourth outcome, reduction in autistic traits, reported a significant beneficial treatment effect for the combined gluten- and casein- free diet.
Pediatr Nurs. 2007 Mar-Apr;33(2):138-43
To date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD).
J Autism Dev Disord. 2006 Apr;36(3):413-20
This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Group data indicated no statistically significant findings.
J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S162-71.
The purpose of this review is to examine the available trials of gluten/casein diets in children with ASDs regarding the strength of their findings and also concerning points that may be useful in the design of future studies.Seven trials of these diets in ASD are critically reviewed; 6 of these were uncontrolled trials and 1 used a single-blind design. All reported efficacy in reducing some autism symptoms, and 2 groups of investigators also reported improvement in nonverbal cognition. Design flaws in all of the studies weaken the confidence that can be placed in their findings.
I don't doubt that some autistic people are intolerant to wheat and/or milk products. This is common among many people, autistic or not. Clearly people will feel better on a diet excluding foods that make them ill. It's a good idea to get a dietitian's advice before trying diets such as these, especially with young children who can't verbalise how they're feeling. And notice, I said dietitian, not nutropath.
I happen to be someone whose language processing was helped significantly by biomed interventions at age 9 (zinc, C, multivitamin-minerals) and jumped from 10% to 50% - enough to eventually develop functional speech (previously fitting Semantic Pragmatic Language Disorder) then up to 70% with the use of Glutamine in my 30s. I'm also very aware of the use of omega 3s in ADHD and Childhood bipolar (also in Pub Med) which are co-morbid conditions which can complicate SOME children's autism.
I'm happy that you feel better on the supplements you mention. However, this doesn't mean that they are necessary for or will benefit others. The evidence of Omega 3's efficacy isn't as clear cut as the mainstream media would have us believe. Would you consider making it more explicit in your lecture, that you are not a scientist, and that just because these measures worked for you, it doesn't mean they will for others, and that a doctor's advice should be taken?
I do not support extremist chelation programs but as the SENSIBLE use of minerals in the management of gut, immune and metabolic disorders is low key chelation, I am on that and have been for decades.
I'm happy to hear this, and I have never written anywhere that you do support chelation.
I have talked for groups on both sides of the culture-cure divide and will speak for any group I agree or disagree with if my information will help their audiences.I very much enjoyed your talk. I do think that your preaching of the biomed gospel, as a highly respected, much published and renowned autistic woman, may be used as evidence of your support for their views of autism as something to be defeated, something where the problems lie mostly within the autistic child, and that changing them is the most important aspect to ensuring they make the most of life. I think that your message of respect, understanding, accommodation and acceptance is diminished by this.
As an autism consultant with over 12 years experience I'm VERY aware that biomed is NOT the answer for all people on the spectrum and that done in the extreme, long term and with no qualified medical supervision can be dangerous. As a consultant the approaches and strategies I suggest are environmental and biomed is only suggested if the family feel there are clear indicators that physiological disorders may be present and potentially contributing to neurological issues as PART of their child's autism.
I hope this clarifies that in a black and white world, I live firmly in the grey.
I would have loved to have heard you mention during your lecture that you are 'VERY aware that biomed is NOT the answer for all people on the spectrum and that done in the extreme, long term and with no qualified medical supervision can be dangerous.' I don't think that it is black and white for most people. Many of us use some type of biomedical approach. My own son used to take an iron supplement, as blood tests demonstrated he needed it. That sometimes left him a bit constipated, so I'd gave him a few spoonfuls of laxative now and then. He's also taken a multi-vitamin regularly, as his diet isn't as varied as I'd like and I can't be sure he's getting all the nutrients he needs. So, we fall into the light grey region according to your analogy.
As for GPs, many are great and have certainly helped me, but mostly they've helped with referrals to specialists. I do hear, however, of some GPs who don't help parents get referrals and fob off health issues as 'part of the autism' whilst being closed minded as to whether treatment of these things may reduce one's degree of autism. My personal experience is that GPs have been good about referring me to specialists when there are physiological issues they haven't been able to manage. Perhaps I'm lucky.
I'm pleased that you have had good experiences with your doctors. I have too. Many of the biomedical approach advocates, often talk about how their doctor doesn't know, care or understand anything about autism, and they have to go to the DAN! practitioners before they're taken seriously. I don't see this myself. Like you said, there are some doctors who are rude or ill informed, and who, as you say, try to blame medical issues a child may have, on their autism. I think that those clamouring about the huge percentages of people who have medical issues because they're autistic, may have contributed to this view among some doctors. The DAN! folk like to imply that there's this vast conspiracy and the mainstream docs are keeping the 'truth' away from the parents.