New research proposed for diet and autism

30 Aug

LBRB has a record of coming down hard on so-called complementary and alternative medicine (CAM). We support evidence based treatments and therapies. CAM is all too often an opportunity for snake oil merchants to rip off parents and potentially harm their children.

It may be  that some CAM interventions are beneficial. Properly conducted research may provide the data to support the claims for a particular therapy. So far the record is not good. Secretin has been tried and found wanting. Facilitated Communication could not live up to the hype. Holding Therapy was not only wrong it was abusive. Chelation is based upon fraudulent challenge testing that has been dismissed by the American College of Medical Toxicologists.

But that does not necessarily mean that all CAM therapies are bad. It does mean that they lack evidence and only research can provide that evidence. Note that evidence is not the same as the parent testimonials that CAM practitioners display on their websites and in their literature. Evidence is data collected by disinterested researchers whose methods and results are open to scrutiny. This is more reliable thsn testimonials, which may be influenced by all sorts of factors, including the placebo effect, recall bias and good old fashioned wishful thinking.

One researcher in the UK who has taken a scientific interest in CAM for autism is Professer Ann Le Couteur. She knows that lots of parents use CAM therapies and wants to investigate their effectiveness. In particular she is interested in parental and professional attitudes to dietary interventions, probably the most widespread alternative therapy for autism. To this end her department has sent out the following letter which is also available on the NAS website.

The study

Researchers at Newcastle University would like to find out about parents’ and child health professionals’ experiences of autism research and their attitudes to the use of the gluten- and casein-free diet as an intervention in ASD. We are carrying out two web-based surveys; one for parents/carers and the other for child health professionals who support children with ASD and their families. The results of these surveys will help us plan the design of UK research studies into biomedical and complementary and alternative therapies for children with ASD.

Participants

Parents/carers of pre-school or primary school-aged children with a diagnosed autism spectrum disorder, and child health professionals who support children with ASD and their families, are invited to take part.

What happens next?

If you are interested in taking part, please visit our website: PADIA. When you follow this link, you’ll go to a web page that tells you more about the study, and will ask you to enter some details.

We will then send you a letter of invitation with a unique ID number and the link to an information sheet. This information sheet has the link to the web-based survey.

If you would like any more information about this study, please contact:

Professor Ann Le Couteur
Tel: 01912 821 384
Email: padia@ncl.ac.uk

When I saw this my first thought was “What about the parents whose children have grown up? What about autistic adults? Do their opinions and experiences matter? So I wrote to Professor Le Couteur who promptly replied and gave me permission to share her reply.

MY LETTER

I recently received an invitation for parents of young children and health care professionals to complete a questionnaire that will assist you plan the design of UK research studies into biomedical and
complementary and alternative therapies for children with ASD. May I enquire if you are also interested in the opinions of parents of older children, and indeed of the adults themselves? Many of us have attempted to implement these therapies in the past or had them done unto us and our experience should not be ignored.

PROFESSOR LE COUTEUR’S REPLY

Dear Mike Stanton

I quite agree experiences of parents of older children and personal experiences are of great interest to us.

The research survey was funded for parents of primary school aged children only and the child health professionals that support them. However if you or anyone you know would be prepared to give us information about your/ their experiences in the past that would be really interesting. We cannot include the information in the survey but would be able to use the account to add to our knowledge and to inform our grant applications etc.

I also value personal accounts as these add great value to my talks and presentations if I have permission to share the experiences (in an anonymised form) for teaching and conference events

Thankyou for contacting PADIA

Your sincerely

Ann Le Couteur
Professor of Child & Adolescent Psychiatry
Institute of Health and Society
Newcastle University
Sir James Spence Institute
Royal Victoria Infirmary
Queen Victoria Road
Newcastle upon Tyne
NE1 4LP

Tel: 0191 2821398 (University)
0191 2821384 (University Secretary)
0191 2196455 (Clinical Secretary)

So there you have it: an autism researcher who is open to personal accounts from parents, professionals and autistic adults in order to assist her in formulating and designing her research programme into CAM. This is a positive invitation and I hope people avail themselves of this opportunity in the spirit in whch it is proffered.

21 Responses to “New research proposed for diet and autism”

  1. Laurentius Rex August 31, 2009 at 00:00 #

    And this is where I declare that those who claim to be scientists are about as far from gnosis as the gnomon on a dark side of the moon sundial.

    Wass kennt sie, und was kannen sie kenn? Nichts?

    They are the supposed intellectual elite but the basic mistakes they mistake appal me as a cognoscente.

    We are doomed that is all I can say. Research Autism is dominated by the ignorami, and Cambridge is the pit of all ignorance, Oxford notwithstanding.

    I think it was Tactitus who said, that they have created a desert and called it peace.

    These fucking so called intellectuals, they do not have the half of a breadth of knowing beyond that I have, not the memory, not the capactity, nor the historictiy, yet they dominate the narrow field that one would believe to be the commanding height of autism science,

    The hypocrites, the evil ones, the stupid ones. I do not think I have ever met an autism so called scientist who knows as much as I do.

    Just what kind of flotsam have they let into our universities?

  2. Clay August 31, 2009 at 00:30 #

    Not every autistic child has problems with gluten or casein, in fact, I think the percentage of those who do would be quite small. I would like to know how that percentage would compare with non-autistic children, who may also have difficulties with gluten and casein. Now there’s a study!

  3. Anna Hayward August 31, 2009 at 01:00 #

    A lot of these dietary interventions are ‘sold’ to us (I am an autistic mother of two autistic children) as harmless. “If they don’t do any good, at least they don’t do any harm” they say. But is that true? Knowing a fair bit about nutrition, it seems to me that providing an adequate diet for a growing child, whilst avoiding two major staples of the Western diet, is extremely difficult. Especially given the notorious “pickiness” of many of our autistic children. Children with Coeliac disease (who often also have lactose intolerance) have multiple health problems due to the gluten-free diet they have to eat, particular problems like osteoporosis, but at least it can be said in their case that the advantages outweigh the risks (if they continued eating gluten they could die). Can the same be said of autistic children? The longterm effects (both risks and benefits) of the GFCF diet are not known. Are we damaging our autistic children’s bodies in a vain attempt to “fix” their brains? Not to mention the risks of encouraging eating disorders in children, already at higher risk of food obsessions, raised to fear “contamination” of their food with gluten or caseine.

  4. passionlessDrone August 31, 2009 at 02:22 #

    Hi Mike Stanton –

    Very well done. I will participate with our experiences.

    – pD

  5. FacingTheEvidenceVoid August 31, 2009 at 08:47 #

    I realize anecdotes are not necessarily welcome in this forum, that good science is preferred, but I feel compelled to share my experience. I grudgingly adopted a GFCF diet for my daughter after one of her diagnosing neurologists suggested it. That 5 weeks correlated with, as I remember it, the hardest period we have ever faced in her life. We can’t say whether it was because she had trouble sleeping without her cup of warm milk before bedtime, or whether it’s because the weather happened to get uncharacteristically hot here (Seattle) during some of that period, or because on the dentist’s advice we had recently removed the pacifier/dummy as well, but our formerly laid-back, 12-hour-a-day-sleeping girl became a tantrum-throwing insomniac. Could it have been the diet itself? Maybe we had her eating a lot more corn than usual? Maybe it’s because she was getting a lot more sugar and sodium because we were relying on slightly more processed snacks? Impossible to know, but I can tell you that GFCF was an expensive, stressful, time-consuming waste of effort in our case. I’m sure there are those who will say it didn’t work because we didn’t try it for six months and because she licked the Play-Doh a few times at preschool and because we didn’t replace all our countertops, utensils and appliances, but all that comes off as magical thinking because what science is there to suggest that trace amounts (or even great gobs) of gluten and casein cause autism, really?

  6. KEEN LA August 31, 2009 at 09:51 #

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    KEEN (Kids Enjoy Exercise Now) is a non-profit volunteer organization that provides FREE sports and recreational activities to children with disabilities. At each KEEN session, a participating athlete (child) is paired with a coach (volunteer) for a variety of age-appropriate recreational activities. The KEEN Festival Field Day will include a variety of activity/sports stations, a team spirit event with awards and healthy snacks for all participants. Every child will be matched with a volunteer coach for the duration of the KEEN Festival Field Day!

    Parents – please bring your child athletes to registration between 10:45 am – 11:00 am. This is a free event for kids (ages 3 – 18) with disabilities. At KEEN LA any child can play!

    KEEN Field Day will be held at the Elysian Park Therapeutic Recreation Center, 929 Academy Road, Los Angeles, 90012. New athletes are welcome to attend. Please contact Leah Weiner, Executive Director of KEEN LA at 213-892-2935 or email info@keenlosangeles.org to register a new athlete. Athletes should arrive between 10:45 am – 11:00 am for registration! Please go to our website http://www.keenlosangeles.org for additional information and to get copies of athlete registration forms. Forms can be mailed to our office – KEEN LA, 601 South Figueroa Street Suite #2500, Los Angeles, CA 90017.

  7. Tracey August 31, 2009 at 16:15 #

    It is nice to hear that further scienfic studies are being done. I have to young boys with autism and I often get frustrated because medical professionals have a hard time addressing certain problems and then you go to “professionals” in alternative medicine and they are pretty much snake oil salesmen.
    Both my boys are different. My youngest son was having some serious gut issues..after several trips to the doctor, the ER and many tests we debated about doing the GFCF diet..we figured that there was some gluten issue because that was all he ate…but we came across enzymes supps to help break down the gluten…within 12 hours his bowel movements changed and the horrible pain filled episodes disappeared.
    Now is he “cured”…NO…he just feels a lot better and is doing much better during school and therapy…
    More science-based research does need to be done and I am glad to hear it is happening

  8. James T August 31, 2009 at 17:31 #

    It’s great to see that there’s more research being done to help we humans corroborate our inherent understanding the food affects health.

    It’s crazy that we’re so inhibited by our perceived lack of science – as if science can give us a guarantee that our food choices will affect our health… you’re lost if you don’t already understand that increasing the QUALITY of inputs (nutrition) to ANY system (the body) will HELP improve the functioning (physical and cognitive) of that system.

    That is the simplicity of this discussion. Concern for gluten and or casein are but two of many reasons to be conscious of food intake for children with autism. Indeed, ALL children should be on a special diet (i.e. a regimen of food intake that provides necessary nutrition and is devoid of problematic substances to the body).

    Is you still don’t believe that food matters for autism, then you haven’t read the book Nourishing Hope for Autism.

    Nutrition heals – that is a known scientific and practical reality that no naysayer can deny…(because it may be difficult).

  9. dr treg August 31, 2009 at 19:18 #

    The Western diet is low in omega-3 and higher omega-3 intake is associated with lower inflammatory cytokine measurements e.g. TNF.
    http://www.ncbi.nlm.nih.gov/pubmed/17045449
    However, most Western diets supply the body with adequate nutrition. There are few presentations of nutritional deficiency in children on these “unhealthy” diets in the West.

    If you are so convinced of the scientific nature of giving all children with autism special diets and vitamins why not show the proof i.e. where are the papers that repeatedly confirm
    1. Children with autism have demonstrable vitamin and omega-3 deficiencies.
    2. Treating these children with no demonstrable deficiencies with vitamins and omega-3 will lead to statistically significant improvement in the psychiatric symptoms of autism.
    Perhaps it would be a better idea to investigate the g-i tract in more detail in children with autism for abnormal immunological responses to gluten and casein.

  10. David N. Brown August 31, 2009 at 23:14 #

    An issue that is important for study is the rate of allergies and gastrointestinal problems in the autistic. They seem to be elevated, but statistical studies to prove or quantify any difference seems to be lacking. In my own experience, I have constant intestinal pain, and I have no idea if what I eat ever makes a difference. As far as “alternative diets”, I think the best test is “plausible benefit”: If an alternative diet has known benefits that apply for any person, then it could plausibly moderate symptoms of autism through improved “general” health alone.

  11. Mike Stanton August 31, 2009 at 23:16 #

    Larry
    blanket condemnation of the present state of autism science does not take us very far. It is not so different from the biomed parents who claim that doctors and researchers know less than they do about autism “because my child is my science. I have done my reaearch and nobody who does not share my lived experience of autism can tell me I am wrong.”

    Clay
    let us hope that Professer Le Couteur’s research addresses your questions. I hope you have sent them to her.

    Anna
    you are right about possible bone damage in children who are put on diets without the supervision of a clinically tained dietician NOT a self proclaimed nutritionist.

    FacingTheEvidenceVoid
    anecdotes are always welcome but when we get conflicting anecdotes we need data. I am sure the professor would love to hear your anecdotes as well as those in favour of the diet. That may help her to devise a study that can deliver reliable data.

    Tracey
    you are absolutely right. We need evidence based medicine. I am glad you sorted out your son’s problems with gluten.

    James T
    you will find that if we only do science that corroborates what we already know it will not get us very far. This is not about good foods versus bad foods. The question is about whether foods that are good for most of us can be bad for some people in some circumstances. In autism the question has been asked of gluten and casein. We will not know the answer until the research has been done.

  12. Toni September 5, 2009 at 14:13 #

    The one issue I have seen with the restrictive diet for ASD is the guilt some parents feel about denying their child certain foods. While working in a group home, I witnessed parents taking their children off the diet as a ‘treat’ by giving them ice cream or fast food; like any diet, ‘cheating’ hinders progress, and I do not know of any parent with a child that has ASD that has completely been able to restrict their child’s diet.

    With that said, what are some steps counselors, doctors, and educators can take to keep the parents and children on track with the diet??

  13. Mike Stanton September 5, 2009 at 14:28 #

    Toni
    as the evidence base for dietary interventions in autism is contradictory at best, I would never encourage a parent to stick to an exclusion diet for autism. If there is a definite medical indication for a special diet I am sure a different dynamic informs the parent doctor relationship. I cannot imagine many parents making their child ill as a special treat.

  14. Sandy September 10, 2009 at 06:50 #

    I am a grandparent of an asd child. I want to stress how important it is to try gluten free/dairy free diets. I have watched in total amazement at how well my grandson has responded. He has gone from no talking,slapping himself, and banging his bed to speaking in sentences, playing well with other children, being potty trained and has started reasoning skills. The latest addition to his diet is ridding his little body of yeast. For all of those who are skeptics, I have seen it work. We will try any diet suggested and proud to do it.

  15. Mike Stanton September 10, 2009 at 08:19 #

    Sandy

    Your experience with your grandchild illustrates the problems with using anecdotal evidence. A membership survey (ie a collection of anecdotes) by the National Autistic Society found that while around half of parents had tried using diets only a tenth of them reported significant improvements.

    Autistic children who do have problems with wheat or dairy will benefit from dietary interventions. But there is no evidence that these problems are more common in autistic children or that they are in any way linked to the development of autistic spectrum disorder. There is enough anecdotal evidence to suggest that these questions merit proper scientific investigation. But we already have science that undermines the hypothesis that gluten and casein are connected to autism.

    Meanwhile, may I stress how important it is to obtain sound medical advice before trying any diet. If a child has problems with wheat it is most likely coeliac disease and will need proper supervision. Problems with dairy are often caused by lactose intolerance rather than problems wth casein. Care needs to be taken that excluding dairy does not deprive the body of essential nutrients with the possibility of future diseass like osteoporosis.

  16. David N. Brown September 10, 2009 at 22:34 #

    To Mike,
    Actually, I think it’s probable that allergies do contribute to the “development” of ASDs, in that an ASD child experiencing a health problem and resulting stress will show more extreme symptoms. I have summed up my suspicions about the relationship of autism and stress in an essay title “vicious when poked with a stick.”

    To Sandy, I think those considering alternative diets, especially “exclusion’ ones, should first look for evidence of food allergies, which may include marked changes in behavior as well as medical symptoms. If repeated observation indicates a problem with certain foods, then by all means remove them from a child’s diet.

  17. Chris September 25, 2009 at 17:18 #

    No. Messi, you are a spammer.

  18. Emily January 25, 2010 at 18:57 #

    Do we know if Professor Le Couteur’s study will include information about whether the children with autism were tested for food allergies before being put on the GFCF diet. That may make a difference as to whether or not the diet would work for the child.

    Also, are they considering looking at diets that take out the refined foods and chemical preservatives that are often found in pre-packaged foods, including those that are gluten free.

  19. Makayla October 14, 2013 at 17:41 #

    Thanks for sharing such a good thought, article is
    fastidious, thats why i have read it fully

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