The battle over the “cure” for autism

Some treatments that work on individuals may cause harm to most

An elementary second-grader counts the days of the month in a special education class for autistic children in Idaho. (Greg Kreller/AP Photo/Idaho Press-Tribune)

UPDATE: A French court ruled against Sophie Robert on Thursday, ordering her to remove the offending segments from “Le Mur” and pay about $45,000 in various fines.

“For more than 30 years, the international scientific community has acknowledged that autism is a neurologic disorder… In France, psychiatry, being very largely dominated by psychoanalysis, ignores these discoveries.” The Wall documentary. 

Culture writes on illness. That’s evident in the battle around a French documentary about autism entitled “Le Mur” or “The Wall.” Today, a court in the northern city Lille will decide whether the film, released online last year, should be censored at the request of psychoanalysts in the country, since it essentially charges that their approach to the disorder ignores decades of scientific progress.

In France, the prevailing notion among analysts is that autism is caused by a mother’s poor relationship with her baby and so it can be treated with the “talking cure.” This is one of many cultural interpretations of the affliction, popularized in North America by the 1988 film, Rain Man. Navajo families believe autism is caused by “spiritual disharmony;” some Haredi ultra-Orthodox Jews see autistic children as former sinners who are reincarnated; and, for South Koreans, a diagnosis made public causes a family’s home to depreciate in value, according to American anthropologist Roy Richard Grinker, who wrote about autism in his book Unstrange Minds.

Science, however, tells us that autism is a disorder with a neurological basis and a strong genetic contribution. And, sadly, there is no cure let alone a “talking cure.”

Yet, even in Canada, this hasn’t stopped quacks from pushing a range of miraculous fixes. Health professionals who deal with autistic children and their parents told Science-ish they’ve seen everything from hyperbaric oxygen chambers installed in the home, to the use of acupuncture, vitamin B12 shots, and stem-cell therapies. Special diets are popular, too. Playboy model Jenny McCarthy claimed that the gluten-free, casein-free diet cured her son’s autism. “As the weeks went on,” she said in 2007, “I noticed my kid coming out of this cloud.”

The evidence, like her claims that autism is caused by the MMR vaccine, just doesn’t bear out. In a 2009 Cochrane Review about gluten- and casein-free diets for autism spectrum disorder (ASD), investigators found that the evidence was “poor,” and there is “a lack of research on potential harms and disbenefits of such diets.” These restrictive diets did not improve behaviour or cognitive and social functioning in people with autism.

Similarly, a  systematic view of the research around intravenous secretin, the widely used gastrointestinal hormone for ASD, found that “there is no evidence that single or multiple dose intravenous secretin is effective and as such it should not currently be recommended or administered as a treatment for autism.”

Ditto for the overall inefficacy of acupuncture for autism.

Supplements are a fashionable treatment, especially omega-3 fatty acids, which are thought to respond to a supposed deficit that contributes to autism. Here too, little promise. Stephen James, of the Arizona State University School of Social Work, was the lead author on the systematic review on this topic, and he told Science-ish that he found no evidence that these pills had any effect on symptoms associated with autism. But, this was telling of the evidence as a whole, he added: “Many interventions for ASD lack a rigorous and robust evidence base, and studies frequently focus on a small number of individuals whose presentations and manifestations may not generalize to the broader population.”

There are some things that may help, though. James, as well as psychiatrists Science-ish spoke to, said early detection for autism is key and research suggests there are improved outcomes with the use of applied behavioural analysis interventions—or behaviour modification. Indeed, a systematic review of these behavioural interventions for ASD, published in the journal Pediatrics last year, found that they resulted in “some improvements in cognitive performance, language skills, and adaptive behaviour skills in some young children with ASDs, although the literature is limited by methodologic concerns.”

So what are those living with autism to do? James suggested parents research and critically evaluate the proof for a treatment they are thinking of using before investing time and money in it. “Given the heterogeneous nature of ASD, anecdotal evidence may support the effectiveness of a treatment among a select group of individuals, but may cause harm in the majority of others,” he wrote in an email.

Dr. Peter Szatmari, professor of psychiatry at McMaster University and a leading researcher on autism, agrees. While he also said the evidence for applied behavioural analysis is promising, he noted there are gaps in the literature, such as no studies that compare the effectiveness of applied behavioural analysis treatments. “There’s a lot of heterogeneity with kids with ASD, so we need to match the intervention to the clinical characteristics of the child. Right now, we’re taking a scatter shot approach: sometimes a treatment is effective, sometimes it’s not.”

In his years of research on autism, Dr. Szatmari has watched a bunch of popular treatments rise and fall. “First it was facilitated communication, then secretin, then the overselling of the Lovaas model, then the vaccination scandal. Now there’s stem-cell therapy and antibiotics… There are a lot of interventions that may make kids better, but nobody would ever say those interventions are ‘cures.’”

That leaves parents in a vulnerable spot—and perhaps particularly susceptible to the try-anything approach. “I would do anything on earth, if I had a kid, to make my kid better,” said Dr. Szatmari, “and some parents turn under a variety of pressures—family, friends, the internet, social media.” So like culture, our desires and emotions write on illness and cures, too. He added: “There’s also a lack of trust in the institution of science.”

Science-ish is a joint project of Maclean’s, The Medical Post, and the McMaster Health Forum. Julia Belluz is the associate editor at The Medical Post. Got a tip? Seen something that’s Science-ish? Message her at julia.belluz@medicalpost.rogers.com or on Twitter @juliaoftoronto




Browse

The battle over the “cure” for autism

  1. I do not agree

  2. Autism is tremendously variable in its manifestations, not only having a huge range of intensities, but also a huge range in the behaviours classified as autistic.  From an evolutionary point of view, there must be some related survival value to the recessive form of the underlying genetics.  All this is still pretty much a mystery, and as such difficult to approach from a research standpoint.  It’s little wonder that there has been such a scattershot collection of approaches to “cures”.

    I suggest reading what Temple Grandin has written for some insights into the condition.  She really has an “inside” story on autism.

    • Temple Grandin remarkable woman – my missus does behaviour therapy with young autistic children and Ms Grandin is hero to many. I did not know about Grandin until I met my missus a couple of years ago and I am fascinated by Temple’s mother who decided to do speech therapy with her child even tho doctors discouraged her from trying to help her daughter. 

    • I am interested to know why you believe there “must be some related survival value to the recessive form of the underlying genetics.”  

      • Assuming (as the current evidence indicates) that there is a genetic component to autism, the condition is sufficiently debilitating that it would greatly reduce the likelihood of reproduction, and unless there is some countervailing survival advantage conferred, it would be bred out of any population in a few generations.  Assuming (on no evidence that I am aware of) that the genetic component is recessive, needing both parents to carry the gene, if individuals have only one part and that part confers a survival advantage, the gene would persist in the population.

        Look up sickle-cell anemia for the classic example of this sort of phenomenon.

        I’m not a geneticist, and I don’t play one on TV or the Web.  This is all high school level science speculation.

        • Interesting theory.  However, as you point out autism is a spectrum illness so if people with Aspergers (a type of autism with less severe symptoms) continue to reproduce, chances are the illness will not be “bred out” of the population anytime soon.  I am guessing that the illness is not due to a recessive gene….there would likely be overwhelming evidence of a genetic component if that were true (every mother and father would have family members with the illness).
          I do not play a geneticist on TV either BUT some fascinating new information has come out since you left high school….all that stuff about blue eyes being recessive and two blue eyed people only having blue eyed kids, turned out to be bunk.  Genetics is an area where knowledge is growing in leaps and bounds.

  3. Maclean’s the last word on science – ? If the author of this article was really interested in ‘science’ she would not be able to ignore the vast research that points to recovery from autism emanating from effective and individualised treatment modalities. Further, she would not be able to ignore (had she looked) at the ‘heterogeneity’ of symptoms that persons who have an autism diagnosis experience both physically and psychologically. There are features common to autism that do not reach the mainstream media like gut dysbiosis, immunological problems, etc.

    This piece shows nothing fresh, nothing new despite the plethora of environmental and edidemiological research that has and is going on pointing to persons with autism having a physical/biomedical predisposition to developing ASD’s. It is fact that treating these anomalies assists the brain and body to function better to the point, for some, to even lose their diagnosis and no longer meet the criteria of autism/ASD.

    this article is a real pity and rather painful to read in light of the evidence that is available. Ho hum.

  4. Autism is simply a term from the psychiatric DSM-IV manual. It’s nothing but a smokescreen. It provides an alibi for the drug companies who added mercury to vaccines at levels 250 times higher than hazardous waste levels (based on toxicity characteristics). It provides an alibi for the CDC, FDA, the American Academy of Pediatrics and the other drug company cronies who are responsible for the safety of our children. It provides an alibi for the pediatricians who administered this poison. It provides an alibi for health insurance companies so they don’t have to pay for treatment for these sick kids. It provides an alibi for psychiatrists so they can force powerfull anti-psychotic drugs on these kids who are already terribly confused.

    There will never be an identifiable cause for autism. There are though 21 published papers which identify the underlying medical condition of autism as neuroinflammatory disease. My favorite is ‘ Neuroglial activation and Neuroinflammation in the Brain of Patients with Autism’. This was published by John Hopkins University. Now, do you want to debate whether mercury, a known neurotoxin, added to childhood vaccines at levels 250 times higher than what the EPA identifies as hazardous waste, causes neuroinflammatory disease? Do you want to debate whether brain damaged kids behave in a way so that some psychiatrist can label them as somewhere on the ‘spectrum’?

    • Sorry Bob105, there is no Thimersol, the organomercury antifungal/antibactural compound in pediatric vaccines.  It only exists in multidose vaccines such as the influenza vaccine…it was long ago removed from the pediatric vaccines which are packaged as a single-dose vial and therefore do not require a preservative.  You can check the vaccine product sites for a listing of contents of vaccines.

      • What about the children who were born in the 1990′s and early 2000′s who recieved 11 mercury preserved shots at birth and again at 2,4,6,12,and 18 months of age? They represent, by far, the largest group of autistic children.

        • I thought that the number of people who have autism has supposedly increased.  Wouldn’t the removal of chemicals from vaccines in the 1990s/early 2000s lead to a decrease if the two were linked?

          • You wouldn’t want to try anything like common sense with these people, AmberL.  They are fixated and even though the charge that vaccination caused autism has been thoroughly reputiated, they continue with their nonsense.

        • These children were also the largest demographic group at that point ever to experience exposure to others at very early ages via daycare.  The easy transmission of subtle viruses that would present as flu or cold symptoms but could cause chronic neurological viral infections would be such a simple thing that it would be too obvious to focus on, apparently.

          • The chronic viral infection makes more sense to me than the genetic link.  Why would there suddenly be such a great increase in the rate of autism if genetics were to blame?  But it makes perfect sense if it’s an infection, especially with sibling involvement.

        • One blogger on another site said there was less “mercury” in the vaccine than in a can in a tuna.  I won’t even argue that with you given that the preservative is not even the same kind of mercury as what you are talking about.  As for your claims of it being at toxic levels….where are your source documents to prove any of this.
          As far as I am aware, Dr. Andrew Wakefield claimed the MMR vaccine is what caused autism.  That vaccine is given to children at the age of 12 months in Canada.  Is this your recollection of his work or not?

      • No longer Thimerosol in vaccines? Sorry, but that’s been outed as a fabrication by the vaccine manufacturers.Independent labs have indeed found mercury… also aluminum and a host of other toxic adjuvants.

        • Wow and Health Canada is still letting them innoculate our kids even though they are providing false information? 
          lauriej1….provide the source material for the information you are ‘sharing’.

      • And what about the aluminum and formaldehyde?  Mercury is not the only culprit.
        As a parent of a child with Autism, I found this article to be one person’s uninformed, surface overview of a topic that I have spent the last four and a half years learning about.  It is offensive to me that no one takes into account the anectodal evidence of the parents of these children.  There is much research to be done involving that, but it will never happen because there is too much money to lose and blame to be passed around in the medical community.

  5. Dear ‘Healthcare Insider’  you are so sadly mistaken.

    • Really, Elaine and I suppose Jenny McCarthy told you the real story.  Listen, you can choose to believe what you want or you can believe scientists like David Suzuki….if you think you live in a country where the leading physicians/scientists and your government is out to maime or kill you, why do you stay here…go to Africa where there aren’t any vaccines (well at least not until Bill Gates gets there to vaccinate everyone).

  6. Another article about autism that completely ignores the cures effected by Dr. Natasha Campbell McBride, author of The Gut and Psychology Syndrome.

  7. Medicine is not science, it’s health technology, and it exists through the manipulation of statistics by the drug manufacturers. Why would anyone “trust” the notion of Dracula guarding the bloodbank? People in record numbers are wising up to the fact that since conventional medicine has no concrete answers for the cause of autism/prevention/cure just makes it look stupid. The fact that the conventional medical establishment, instead of finding real answers (for fear that it will find incriminating evidence in it’s practises) spends its time lambasting alternative therapies doesn’t detract from the fact that their credibility is shot.
    There are indeed cures for autism. Just not from conventional medicine. They can’t prevent it or fix it, so their strategy is to divert the attention to some other issue.

    • My daughter, age 3, has autism. I don’t care what caused it I just want insurance companies to be fair and allow my daughter the same service as others. Put yourself in my shoes.

    • Then lauriej1 share these cures with the world.  No one on this blog cares if the cures have anything to do with conventional medicine except for you.  You accuse conventional medical practioners of spending their time “lambasting alternative therapies” instead of finding real answers….well you have provided no answers either and have spend all your time lambasting conventional medical practioners and making wild accusations of conspiracies that you have not backed up with one piece of source material.

  8. Healthcare Insider – am i mistaken or do you have a ‘shill’ presentation about your comments ? Why the interest if I may ask?  Do you have children/loved ones who have autism? Where does your ‘interest’ and venting of spleen come from if not from personal experience? Do you have that?

    I have 3 children who have an ASD and have 15 years experience, first hand experience I may add, having conceived all three of them, grown them in my belly and worked tirelessly for at least 1/3 of my entire life to help them.  What exactly is it that you wish to bring this discussion?

    Like one of the posters said earlier, medicalists, when they cannot explain, like to divert which is exactly what you are doing. Autism is treatable, autism is recoverable.

    Autism is also a huge money maker, a cash cow if you will and today anyone can make a mint out of autism and out of my kids’ disabilities. It’s big business.

    Who has a vested interested in ‘cure’ or recovery when so much money is being made. No money in the cure.

    Psychologists, teachers, so called experts, pharma, special ed consultants, teachers, all earning a living off my children. Nice one.

    Either say something useful or not – bring something to the table. We who live with autism issues have heard it all before, the nay saying and attempts at ‘de-bunking’. I have recovered 2 of my children they have lives now. Had i listened to the so called medical ‘experts’ they would probably be facing special school for the rest of their lives and possibly institutionalisation.

    Your comments if listened to by others who are vulnerable could very well ruin the lives of children and their families.

    Look to the light people – the answers are out there – our children need our help, OUR help, you know the people like you and me who love them dearly – not shills, not pharmaceutical agents who go peddling their wares, not so called experts ….

    Love in action is helping children with autism to live their lives, the lives they deserve. This Macleans article is woefully ill informed and mis- informed by someone who knows little if nothing about autism.

    The evidence is there, why won’t people look???  

    • I do have a special interest in promoting vaccination…..I had a baby who got whooping cough prior at 6 weeks old and was deathly ill.  I am sorry if there is “shill” presentation to my comments but I too take it personally when people spout inaccuracies about vaccination.  You only have to do research to realize that children are getting ill and dying from diseases like whooping cough (California, June 2010 - 910 ill/5 dead)  because their parents have been frightened away from getting vaccinated by quacks like Dr. Wakefield (who is no longer a doctor due to his fraudulent behavior).  I have nothing but sympathy for the parents of children with autism.  However,  I cannot in good conscience sit by and watch while something with so few risks and so many benefits such as vaccination is blamed as a casual agent for autism when the information is completely false.  With a vaccine for HIV now on the forefront and Bill Gates promise to vaccinate all third world countries against diseases, I sincerely hope that people will become aware of the importance of listening to the “experts” instead of Jenny McCarthy.  Surely people will not risk their children getting HIV on the advice of a playboy model.
      I have no doubt that you as a mother of three children with autism are an expert in the illness.  I do not believe I have given you any indication that I am an expert in that illness.  I only asked that anyone who knows how to cure the illness share their information. 

      • I so agree!
        This ‘vaccines causing autism’ thing drives me nuts! 

      • Proof that there is efficacy in mass vaccinating children, particularly children who are new born babies (if you live in the USA) does not exist.

        We could debate endlessly on this matter – at the end of the day, you do what you want with your children and I will do what I want with mine.

        I have experience and interest in helping children who have autism to overcome their autism, be healthy and have independence. I don’t believe that my child or other children with disabilities like autism can or will be happy if all they face is residential care (particularly after their parents pass away and they become wards of the state).

        If you want to help children and adults who have autism, learn about how you can treat autism, how to direct parents to treat their children’s autism. Sparring about vaccination gets us nowhere for those who have already been vaccinated. The horse has left the stable already.

        Jenny McCarthy is an ‘expert’ regarding her own child as much as you are an expert regarding yours.

        Your tone is emotional, your use of rhetoric is glaringly obvious.

        If you want to ask how to ‘cure’ autism, (which I don’t believe anyone has actually mentioned) then just ask.

        Most if not all parents will tell you that autism is not ‘curable’ – they may, however, advise you, like I would, that their children are recovered.

        It’s semantics but it’s important. If you were in a car crash and damaged your spine but recovered enough to walk again, would you say you were ‘cured’ of the car crash? My kids are recovered and recovering. They needed to heal from the car crash which in their lives, was the things that created their autism.

        They and I have nothing to prove to you or anyone else, but make no mistake that autism is recoverable.

        I am not, as suggested by the ill-informed author of the article a parent who will take a ‘try anything’ approach. I had the help of very capable, experienced and well- respected physicians to help my children.

        Where your physicians may subscribe to injecting poisons into newborns for no known reason, my doctors have learned from their mistakes and their medical practice takes into account the reality of what is going on regarding autism, environmental causation and preventing further damage to future children in this world.

        • as before, you claim to be an expert in your children (already debateable, as if we can’t have willful blindness about those we love, but I’ll grant it), but you make claims about vaccination efficacy – that
          suggests you imagine yourself an expert in a field beyond your children.

          It would be funny, were it not so sad.  The people closest to this are understandably, desperately hungry for a cure or at least an effective treatment, and being told “we don’t know much” can’t be satisfying – it’s just the truth.  That this naturally leads to clutching at straws and falling prey to confirmation biases isn’t surprising, but unfortunately, it kills people.

          Being a parent of a sick child certainly does make one research the subject, but it does not make one smart, nor does it make one a scientist.  Not only does it not protect one from fallacious reasoning, it has the opposite effect – by the inevitable emotional connection, it’s the parents who are most vulnerable to deluding themselves, and each other.

          Vaccination comes with risks – of which autism is NOT one – but overall it is a huge lifesaver, and anyone who argues otherwise is not only foolish, but spreads dangerous misinformation. 

          How many times do we have to hear the slanderous claims that all scientists, physicians, and drug manufacturers are so incompetent or evil that they’re missing or ignoring the Truth that is apparently so obvious to those with the least education?  Oh, sure, they’re all in it for the money.  Why, I have a book, sold for profit by someone shunned by essentially every scientist, that proves it!

          Everyone idolizes the maverick, the lone hero bucking the system – it’s such a seductive lie.  Here’s a hint – when one line of reasoning conveniently meshes with what you want to believe is the time to double your skepticism.

          I have no financial stake in this, though I do have a child who’s ‘different’ (not ASD).  My interest is simple disgust at the arrogance found in the most ignorant, and the twisted, sick worldview that so readily ignores real science for quackery.

          • As you appear to be replying to me GrayG, can I say I don’t even know what you are talking about.

            However, your tone is passively aggressive, and rude. Personally, I don’t know how you can have ‘simple disgust’ (sic) as an ‘interest’.

            Please inform yourself what ‘real’ science is, what ‘real’ science does and does not do.

            It would be interesting to know what disgusts you, why and how it feels.

            Still, autism is recoverable. I and thousands of other physicians parents, nutritionists and more could advise how autism becomes recoverable. There is little point in throwing pearls to swine so to speak.

          • As a mother of an autistic child and also a health care professional, I agree wholeheartedly with GrayG. The is no great conspiracy to keep kids autistic by money grubbing evil scientists. Why is it when people become emotionally invested in an issue that paranoia and a suspension of common sense follow? I believe the increase in autism is from the large broadening of what is considered autistic over the past 10-20 years not from vaccines, genetics or viruses. Autism has always existed it’s just that in the past children were classified as all sorts of nonPC conditions. My son is considered very high functioning so much so that 20 years ago he probably wouldn’t even have received the diagnosis. He’s special, loved and supported so I don’t spend my time fixating on why he is the way he is.

          • This may not prove anything but I can personally relate with the changes in my child after vaccination.
            http://www.whale.to/vaccine/olmsted.html

  9. i also do not agree

    • I have an Autistic child and have contacted some clinics in Ukraine and Mexico dealing with Stem Cells treatment. I’m desperate to treat my child though but will appreciate your valuable comment before I take a step further.
      Thank you
      ———————————————————–
      This is the respond of one of the clinics dealing with stem cell treatment.:

      Dear Mr……..
      Treatment takes 2 days and includes the following:
      Day 1
      Blood/urine tests
      Examination by EmCell doctors and neurologist
      Additional examinations if necessary
      Cardiac Exam
      Treatment (IV infusions and/or injections of fetal stem cells)
      Short rest
      N.B. Outdoor activities are not recommended after the first day of treatment
      Day 2
      Pre-treatment examination by EmCell doctors
      Treatment (IV infusions and/or injections of fetal stem cells)
      Short rest
      Post-treatment session with the doctors

      Price of the treatment is 12 000 USD

Sign in to comment.