28 Sep 2007

Donna Williams comments

Donna Williams commented on a recent post, not the post I wrote about her lecture, but the one in which I discussed the NI based P2P autism organisation. I have too much to say back to put it in the comments, so I've written a new post.

Donna said;
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.

DW:
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?

DW:
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.

DW:
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.

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 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.

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.

DW:
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.

32 comments:

Joseph said...

I'd agree that the evidence is not conclussive. Certainly, autistic people tend to have some medical issues more often than non-autistics. But a proper case-control study looking into this question should examine autistics and controls in a blinded manner.

I couldn't find the Shattock study on gluten and casein. Was it a controlled study?

I'd suggest that Donna is operating under confirmation bias. She has some gastrointestinal issues and also happens to be autistic. Add publicity on certain autism theories, and she'll tend to associate the two consequently.

Christschool said...

Donna I think could further the concerns of autistic people if she could talk to the subjugation of autistic people. To bring attention to the lack of accomodation, inclusion and the horrors of places like the Judge Rotenberg Center. I just have the feeling that she is pandering a bit too much to the fears of parent's reaction of the diagnosis. It's not the autism people need to fear, it's society's reaction to autism that needs to be feared. But, my guess is that no one on the "autism lecture circuit" wants to hear that message. The message that - they are contributing and are passive/active participants in the subjugation of autistic people. Wouldn't want to make anyone uncomfortable would we?! I'm here to make people uncomfortable in their prejudices and I'm here to make people confront that subjugation.

I agree that present/future generations of autistic children deserve ethical medical advice. Autistic children are being put through hell for the lack of ethics and the greed of some physicians and dare I say autistic parents who also happen to be MDs. They/we are demonised by those "do-gooders" who are "just trying to help".

It is hell enough for autistic people as it is. Don't divert attention from the real issues, which is expanded opportunity, accomodation, inclusion and acceptance of autistic people!

Christschool said...

Sorry, instead of "I say autistic parents" I should have written "parents of autistic children".

Steve D said...

Sharon -
This is a respectful, well-written and well-presented post which covers a lot of ground and a lot of areas of thought. Excellent, excellent writing - and thinking.

Sharon said...

Joseph, I don't think Shattock has done a controlled study. If he has, I can't find it either. I can't find any study confirming that 80% of autistic people can't digest these proteins.

Confirmation bias might explain some of this.

CS, I think that if Donna shone the light of her intellect and excellent writing and speaking skills on these issues, it would do much good. I fully accept that I have no right to tell someone else what they should be doing, and emphasis, hat this is just my opinion, and what I'd like to see.

Steve, why thank you! (Blush)

Anonymous said...

Take a look at:

http://www.npif.no/forskning

Research collection about gluten-casein-disease-connection.

erkolos said...

After a urine test NeuroZym diagnosed me with milk-protein intolerance. So I was set to diet without milk which mom still force me to have today. She thinks that I have improved after the diet by being less depressed, which she thinks is directly linked to my Asperger Syndrome, if I ever seemed less depressed it is really because I got away from the bullying at primary at the same time.

I wish she wont get too upset when I get back to milk when I move out.

Sharon said...

Thanks for the link anon. I had a brief look and see some of the abstracts I already cited. I know there's a gluten or casein link with some disease. I have close relatives with celiac, so we ruled hat out with my son years ago. I still don't see much beyond parent opinion that any diet helps autistic children. If it does help in individual cases, well fine. I'd just like to know why it helps.

Hello Erkolos and thanks for your comment.
I don't know how a urine test can detect something like a milk protein intolerance. I know there is a hypothesis that it's all do do with leaky guts and opioids, but it hasn't, as far as I know, been proven. Perhaps you could see a dietitian, keep a food diary then do something like an elimination diet and record how you feel. That's supposed to be the best way to detect food intolerance. Dietitians will be able to advise you anyway.

I'm not surprised you feel less depressed now that you've got away from bullying. That's much more likely to have caused your depression that drinking milk! I hope you can figure this out, and convince your mum of what is really going on.

Jon said...

A bit off-topic, but by far and away the most common type of milk intolerance is lactose intolerance - happily, this is generally easy to diagnose with a hydrogen breath test or similar (i.e. an elimination diet isn't needed). A dietitian or allergist should be able to advise, anyway.

If eating less or no dairy does bring health improvements (less GI problems, etc) lactose intolerance is common enough that it definitely seems worth looking into. As a bonus, avoiding lactose is less restrictive than avoiding casein (e.g. some types of cheese are often OK for lactose intolerant people to eat).

Sharon said...

Thanks for that info Jon and I hope it will be helpful to Erkolos too. This is not an area I have any expertise in which is why I'd always advise people to see dieticians or doctors who know what they're talking about.

Jon said...

sure - definitely a good idea to see a doctor/dietitian for advice, whether using an elimination diet or other method (fwiw, I don't think hydrogen breath test is available as a home testing kit, and the home testing kits that are available for food intolerance - IgG tests, for example - should be avoided).

Kev said...

Thank you for this series of posts Sharon.

Ms Williams, on the offchance you're reading this, I want to tell you how very much I enjoyed the books about your childhood. They were among the first books written by an autistic person I read.

But I am equally disappointed by your stance regarding these treatments. Do you believe it would be OK for me as a non-autistic person to speak at a conference about the experience of being autistic? That is pretty much what you are doing with these 'treatments'.

If people are ill, they need to see doctors. I'm afraid that by your continued promotion of these treatments - and by your association with DAN! groups - you are contributing to a situation where - at best - children are being experimented on. I find it amazing that anyone who had the sort of childhood you had would go along with such a scenario.

EKC said...

Another good post, Sharon. I like how when discussing issues you quote the material that you are referring to and then give your opinion on the subject matter - it makes it quite easy to follow. I agree with you that DW should have said that these certain methods worked for *her* but this is not necessarily the case for everyone. I think it's great to for someone to share his/her opinion and what worked for him/her, but to make sure that people know that this is his/her opinion and personal experience, instead of stating it like it's the norm and this is the way (the only way) everyone should go about that situation.

Sharon said...

Thanks Kev and EKC.

Donna said...

Why the photos only go up to age 9 is that there are only 3 photos from age 9-14 then one at 19 and the rest from my 20s onwards. All 3 photos 9-14 are on my website at http://www.donnawilliams.net
The reason is that my uncle took the majority of the childhood photos. He was a photographer and wasn't about much once I was 9 and I went to live mostly with a friend's family from 13-15, then no longer lived with my family. I think my odd ways may also have intrigued him when I was younger and by age 9 these looked more 'disturbed', alienated, perhaps not so appealing to a photographer.

Donna said...

How I feel about the abuse of people with autism in society should be clear given I seek to humanise autistic responses and remove the 'mystery'.

I have done a lot of work for social services and the health services. I've been to psychiatric and residential care units, seen good, seen ok, and seen the very worst.

I've fought hard against those schools and residentials who refuse to credit people with emotional or intellectual intelligence or refuse to allow children to use typed communication. I've extensively promoted an indirectly confrontational approach over the use of constraint and aversives. I have argued wherever possible for environmental and nutritional approaches to avoid seeing 35 year olds with liver failure from overzealous medication (yes, I've seen that too) but equally accept when a child has a clear presentation of such severe mood anxiety and compulsive disorders that the family are ready to institutionalise the child and recognise when realism about medication has sometimes kept a child from life long residential care. I have fought hard to encourage families to see the child first, not the condition and to advocate in the community, not hide their children away from it.

I'm under no illusions of how bad it is 'out there'. At the same time I try to reserve the privacy, where possible, of my clients and those who have hired me as a consultant whether I loved what they do, detest it or anywhere in between. At the same time I'll talk about THE ISSUES but I'll seek to draw on my own examples where possible to save drawing on their's, reserving their privacy, if I can.

It takes a great deal of reserve to gain the trust of families, institutions and professionals and if I fail to rant loud and clear, shaming all failings I see, this is perhaps because I find the field so flooded with venom and hatred, old and new stereotypes, possessively defended pet theories, vested interests, dogmatic fixations, idealistic crusades, that I try instead to focus on positive pathways toward change if I can.

Donna said...

Paul Shattock's studies were funded by Sunderland University. Paul is a pharmacologist. The testing he relied upon was the same type used as standard in some hospitals.

Just because 80% of people with autism in his studies couldn't fully digest casein and gluten doesn't mean that ALL were neurologically altered or impaired by this. I'm sure its a matter of degree. Many people with coeliac for example have no neurological symptoms, only physical ones. Others have described mental confusion, anxiety and mood disorders and learning problems until they came off gluten. Casein intolerance and casein alergy also have different impacts. I'm gluten intolerant and ALLERGIC to dairy.

Because of a high inflammatory state (yes, I have a medical test showing I had 5 times the high level of inflammatory cytokines, just in case you'd like to know if this is based on testing) MY allergy effects me neurologically. But MOST people with dairy allergy who DON'T have an inflamed blood-brain barrier due to a chronic inflammatory state (which would likely only be present in those with immune deficiency) may not experience neurological, perceptual or cognitive impact of such allergies.

So its important to understand Paul's findings in a wider context. Dairy effected me like LSD. In consultancy I met many kids who had respiratory problems which went away when going CF, but a smaller percentage who had severe neurological, perceptual, cognitive issues (and associated severe self injury) who appeared to lose or greatly decrease these problems after testing and treatment for dairy ALLERGY.

As for gluten intolerance and neurological effects, read the pub med stuff on removal of gluten/wheat and improvements in a percentage of those with schizophrenia. Whilst this is not autism, the studies demonstrate that in SOME people gluten/wheat intolerance/allergy can significantly impair neurological function in SOME people.

This is NOT to say this is so with all people with autism, just to keep an open mind that if may be so for a percentage.

There is no ONE TYPE of person with autism and as a consultant I don't see the happy kids who are making great progress, I often see the ones who are violent, self injurious or challenged by significant co-morbid issues. So whilst physiological issues may not be at work with a significant percentage, I must still cover their existance in a percentage (none of my lectures are JUST about physiological issues) of my lectures or I do a disservice to those who are in that group.

As a public speaker the experiences of the audience members are VAST and one can't do a lecture which pleases all the people all of the time. But generally most find some percentage of my lectures useful. Whilst there may be those who may be vehemently against one section of a lecture, others in the same audience will be extremely grateful to hear that same section.

I so wish people could acknowlege the diversity in this field.

Donna said...

and, no, I've never taken LSD.
but having mesmerising halos around lights, the floor swimming, background and foreground shifting places and dramatic emotional reactions to sound, movement and visual patterns to the degree one looks anywhere from 'somewhere else' to 'off one's face', sounds as akin to an LSD type experience as I've heard.

as for Gluten, it never sent ME off my head, but I was agitated, quicker to rage, anxious, dark and depressive and tended to rant, pace and bite myself when on it, and didn't when GF. But that's ME. So, no, didn't solve my AUTISM, but sure helped me appear less 'autistic' and be easier on those around me

and for Salicylates, the usual ADHD Feingold diet been around 20 years, high salicylate makes ME like someone on cocaine (never taken that either :-) meaning can't sit still, everything fragments far more, agitated, far more prone to mania (already bipolar), far more distractable, far more mono (ability to hold more than 1-2 tracks flies out the window, so reasoning with me becomes hard-impossible so stress is much higher) and I start slapping, smacking, biting because I'm so hyped up. Again, these are MY experiences.

Sharon said...

Hello Donna and thank you so much for taking the time to comment here. Firstly thank you for giving details of the important and valuable advocacy work you do. I apologise if I implied that you don't do enough of this. Your books, other writings and direct work will no doubt benefit countless autistic people. I know that you will have directly helped my own son through your work, since it's helped me have a better understanding of him.

Regarding Paul Shattock and his 20 years of experience as a 'pharmacologist', as you refer to him here and in another comment you left, he is described on the ARU website as;
"Mr.Paul Shattock B.Pharm Dip.Ag.Vet.Pharm O.B.E.
Paul Shattock is Honorary Director of the Autism Research Unit (ARU) following his retirement in 1998 from teaching Pharmacy for over 20 years at the University of Sunderland."

He's a pharmacist with a Diploma in Veterinary and Agricultural Pharmacy. That's not the same thing as a pharmacologist. Mr Shattock has not published any study which gives credence to his claims of opioid peptides. Others dispute his findings, like this paper which shows no correlation between IAG and autism. I would expect that Mr Shattock, who first came up with his idea over 15 years ago, would have some concrete evidence to back it up by now. There just isn't any. The You have several times claimed that he has shown that 80% of autistic people couldn't fully digest casein and gluten. Where is this published? What kind of study is it? Has it been reproduced? Was it a controlled, double-blind study or some kind of survey?

As I have said several times, I do not dispute your own health issues nor the treatments you have taken. I know lots of people feel better when they remove gluten from their diet, and they're not all autistic, (2 of my father's siblings were diagnosed with celiac disease). Paul Shattock claims may be correct, but the evidence just isn't there yet to prove that.

Donna, my main problem was that you didn't once mention the need to consult with a properly qualified medical expert while investigating the biomedical ways of trying to help our children. And you didn't emphasis that not all children have these issues.

Donna said...

Hi Sharon,

if I failed to point out the percentage that haven't been found to have gut/immune/metabolic disorders then that's my oversight as I usually make that overt... but this was one of 9 lectures in the UK tour. In any case if there's a stat like Gupta's pub med stuff re 20% of kids with autism having insufficient IgA (an immune system flag without which white cells don't know where to go to fight bugs and enzyme production isn't triggered in response to foods) and that 10% (and I was in that 10% group) have none, so are essentially brain starved due to an immune fault, then to me its clear in any case that 80% don't have this at all and 90% won't have it so badly they'll be badly brain starved. Same with Rosemary Waring's stats re Salicylate intolerance (B'ham University). If she finds 60% can't metabolise Salicylates, then clearly 40% can. So I'm not sure I need to be THAT overt.

For example, Temple shows brain slides re 10% of people with autism who have a small cerebellum (one of Baron-Cohens tracks) and clearly 90% don't, but she doesn't make that overt and I don't think she has to. In any case if you're in that 10% or 10-20% or 60% then the info is useful to YOUR GROUP and its clear that a significant number of people won't be in that group. That's why we need to get clear that there is no ONE 'autism', that the underlying contributors are many, some requiring treatment and management, others only requiring accommodation, respect and advocacy.

As for pharmacist versus pharmacologist, a pharmacist has to have a degree in the study of pharmacy, which is called pharmacology. Sure, if his is on the pharmacology of animals, that's a useful difference, but the fact remains that whether gluten intolerance adds to someone's disorientation, absorbtion of nutrients from a damaged gut, etc, is actually the issue... making the leap about it causing autism is far different, but in some people it could probably complicate their already present challenges.

Temple, by the way, has a PHd in animal husbandry and engineering. Yet she is proclaimed to have special abilities and awareness expected of a psychologist/zoologist, so I can see where you're coming from, particularly when she projects her ability to think in pictures onto 'all autistics'. As 60-65% of the GENERAL POPULATION in studies claimed to predominantly use visual thinking, then if some people with ASD do too this doesn't have any necessary relationship to autism. In fact around 30% of severely autistic kids I've worked with displayed behaviours indicative of visual and verbal agnosia - meaning deaf and meaning blind (including context blindness). I'm in this same group (yes a psychiatrist once proclaimed I was agnosic and my visual and verbal receptive stuff is well documented) but what I'm getting at is that if you keep giving kids with visual agnosia PECS to work with based on believing 'them' all visual thinkers, then you end up labeling the visually agnosic kids as severely 'autistic' AND failing to use the alternatives which WOULD help them.

Anyway, the chaos begins with the presumption of one type of autism rather than seeing autistic as an umbrella term for a range of things going on, often different in different subgroups.

Sharon said...

Thanks again for your thoughts Donna.
What I am trying to express, is that whereas you know that you have the medical issues you described, there is no evidence that such high numbers of autistic people in general also have these issues. Shattock has not published any evidence.
I don't expect you to say that 80% of people have these issues, therefore 20% don't, since everyone knows what 100 minus 80 is! But can you be utterly confident in the 80% figure when there's no evidence to support it? It would be more accurate to say that many people appear to feel better when they remove gluten and/or casein from their diet, but before changing the diet of a child, particularly one who cannot communicate well, discuss this with a doctor of dietitian. Any benefits of a diet in a person with allergy or even intolerances should, I think, be apparent very quickly.

I have only read a few articles by Ms Grandin. I much prefer you own writing! I fully agree with you that the perception of all autistic people 'thinking in pictures' is wrong. People need to be considered as individuals, with their own strengths, weaknesses, learning styles and sensory preferences. My son loves trains, the computer, chase games, tickles, being swung round and climbing all over me. He likes to make little pictures of his favoured objects, or for me to make them for him. He is learning and developing through his interests and by having fun with his family.

I liked what you said in your lecture about siblings. My children are all home-educated so that they are growing up together as opposed to herded off into separate schools, with the non-autistic 2 perhaps learning to be embarrassed or ashamed of their brother and his differences.

Donna said...

your emphasis on fun, belonging and equality in your family is heartening. People don't realise that such things are part of being physically healthy... not that such things alone can solve severe health issues but feeling good in the soul is always good for the body (often also vice versa!).

I think the most reliable pub med info re health and autism is the university of CA Gupta studies. These showed 20% of kids with autism had an IgA primary immune deficiency. One of the impacts of insufficient secretory IgA is not just more bugs, longer lasting but also very poor enzyme production and that means the hardest to digest foods will be the most problematic. The gluten and casein proteins are the hardest common proteins to digest... feel free to look that up... so it's to be expected that this 20% group would be the most likely to struggle to digest these. But the elderly do too. And those with chronic anxiety have reduced gut function. So whilst 80% in Paul's monitored studies can't digest Gluten and Casein, some may only have this due to chronic anxiety, with others the situation may be more problematic. In any case a comparison with the general population would be interesting, particularly the elderly.

Many GPs insist on invasive blood and biopsy re coeliac rather than first monitor a 30 days trial. That's really unfortunate because gluten intolerance isn't always coeliac in any case.

I think that a 30 days trial is enough to see if a dietary change works or not. In my case, however, it was more problematic as my dietary issues were in overlapping groups. Coming out of one would likely have lead to an increase of foods in one of the others, meaning no clear improvement until all three were altered.

But I had testing confirm my situation in all cases before diet... but that was in 1990, before dietary interventions were even known of in the autism field. I guess if I'd been suggested the diet I'm on (GF/CF, low salicylate, low sugar) in 1995-2000 I'd probably have just trialled it for 30 days, but only if I already had clear serious health issues that convinced me it might make sense. I was very fixated on what I 'liked' (which was usually what I was addicted to and sent me 'high').

I certainly don't think anyone should stick at something if it shows no improvements for that person, and that goes for behavioural interventions too... if a child is worsening after 3-6 months of a program, I get annoyed at BUSINESSES which GUILT and PRESSURE some parents to stick with an expensive program that isn't working with THEIR child. When people work in the CARE field, they should CARE enough to help parents transition to something different if their own PRODUCT is worsening a child.

Anyway, just one of my pet annoyances.

Joseph said...

I might have missed it, but is there a link to this study by Shattock?

BTW, I came across this by chance today. It appears that Shattock was involved in the Secretin hoopla. Same rationale: food having a "morphine-like effect".

The Glasers said...

My daughter was one of those children who had difficulty verbalizing what she felt. She is on a gf/cf/apple-juice-free diet based on the following evidence in a non-blind non-random experiment with sample size of one.

1. When she was four, I noticed that apple juice and apple sauce gave her insomnia. Prior to taking her off apple products, she slept about four hours a night, restless, kicking, head sweats. We take her off apples and she starts sleeping normally for three months. We were vigilant about apple products and every time she developed insomnia for a night or two we could trace it back to apples. Her normal sleeping patterns continued, except when she accidentally got access to apple juice.

2. She had no success in potty training during her preschool years. We put her on the gf/cf diet when she was six and, in two weeks, she had bladder and bowel control. Coincidence? Every time she had a slip up in the diet, she lost bladder control the next day. In one case, my entire family saw her pick up a biscuit and eat a few bites before they could stop. I predicted three things to happen the next day: loss of bladder control, a rash, and irritability. Up until that point in the family vacation, she had displayed none of these symptoms. It happened just as I had predicted.

3. Another thing I noticed is that she would eat the wrong food, she would "forget" her math skills for about three days. It became too frustrating to try and teach her on those days. So, if she ate the wrong food, I would see if she could do math. If she struggled, I skipped it for three days because there was no point in it.

What do you think of parents carefully observing the links between diet and behavior? Yes, I know this is not double-blind placebo-controlled--I have a master's degree in statistsics.

While we did see a link between physical symptoms and food, we also saw food linked to behavior, too.

In our case, we have never had a DAN! doctor and were not scammed by anyone. The savings in not having to buy diapers made up for the extra cost of food.

BTW, we did see an allergist who gave standard skin tests that revealed food allergies to peanuts, but NOT wheat, milk, nor apples. Because tests administered by allergists or DAN! doctors can have false positives or false negatives, the only true test is real life: keeping a diary of foods and symptoms, removing foods, and seeing what happens when they are eliminated and added back. My daughter happens to be like Donna Williams in that food affects her behavior in ways that are predictable based upon previous experience.

Sharon said...

Hello the Glasers and thanks writing about your daughter, You said,
'Because tests administered by allergists or DAN! doctors can have false positives or false negatives, the only true test is real life: keeping a diary of foods and symptoms, removing foods, and seeing what happens when they are eliminated and added back.'

This seems to be a very sensible way of helping your child and I'm glad you have been able to figure out what works for her. You have evidence of what helps her as an individual.

David N. Andrews MEd (Distinction) said...

"Temple, by the way, has a PHd in animal husbandry and engineering. Yet she is proclaimed to have special abilities and awareness expected of a psychologist/zoologist,..."

Yes, Grandin has a Ph. D. in animal husbandry. Her first degree, however is in psychology; and she also has a Master's degree in animal science... zoology. Since she has degrees in psychology and zoology, wouldn't one expect her to have at least some of the abilities and insights expected from psychologist or zoologists?

David N. Andrews MEd (Distinction) said...

"As for pharmacist versus pharmacologist, a pharmacist has to have a degree in the study of pharmacy, which is called pharmacology."

Hmmm... not so.

A pharmcist has to have a degree in pharmacy, which involves the study of pharmacology along with other biological sciences, as well as pharmceutics-related topics such as pharmacognosy, and allows the person upon graduation to practise as a pharmacist; someone with a degree in pharmacology - even in clinical pharmacology - does not have the necessary training to practise as a pharmacist.

From wiki entries:
"Pharmacy (from the Greek φάρμακον 'pharmakos' = drug) is the health profession that links the health sciences with the chemical sciences, and it is charged with ensuring the safe and effective use of medication."

"Pharmacology is the study of how drugs interact with living organisms to produce a change in function."

As an example of how these are separated, the University of Nottingham teaches pharmacology in the School of Biomedical Sciences, which pharmacy is taught in the School of Pharmacy.

adhdvoice said...

Ithink ur a credit to urself i take my hat of to you i am 31 and just disgnosed with adhd,ocd,learning difficulties,so dont give up .Gina pera the award winning auther conntacted me.And some how id like to promote ur story i just stumbled apond it and it touch my heart,hope u keep going ur supporters at adult ADHDvoice N.I ,i would link u up to my blog u touch my heart .

adult ADHDvoice said...

just a we motto "if a man hasnt discoverd something to die for he aint fit to live"---Martin Luther King jr

Anonymous said...

Donna Williams, bless her soul, is NOT autistic....she presents as someone who suffers from atypical multiple personality disorder...she appears quite versed on autism , but the reality is she's one of these folks who has given a false face to autism...she's simply not autistic.

Sharon said...

Anon, I allowed your comment despite the lack of evidence you provide to back up your assertion. I believe Donna's version of her life and not you, but bless your soul anyway.

Anonymous said...

The evidence is found in Charles Hart's book, "a parent's guide to autism" he mentions it in the back of his book as one of the examples of how people labeled autistic are sometimes not really autistic..he also mentions the book, Fighting for Tony, where it turns out the kid was never autistic to begin with, but the media hyped up the "autistic cure" part of book...ditto Jenny Mccarthy's kid, he was never and is not autistic according to several experts. He suffered febrile seizures, regressed, when treated with anti convulsants and diet, he slowly recovered. Not autism. Temple grandin is one of few really high functioning autistics found in media..i also like "The Siege," I think it's by Clara Burton...that's true autism..McCarthy's louder than words is louder than lies...it's pure rubbish. New age hype.