Saturday, March 31, 2012

Sending Excrement to Australia: "You need to take out a second mortgage"

There's no such thing as a free lunch, I mean weekend away. Don't get me wrong, I'm very glad we accepted the invitation to two nights' hotel accommodation and a seminar presentation on therapeutic approaches to autism. I mean, it was two kid-free nights. Plus, I have learnt absolutely loads about alternative approaches to treating autism. It's been an absolute eye-opener. A real revelation. For the first time I know the value of these treatments. So much so that I will probably never bother attending ever again. And I certainly won't be following their financial advice.

The warning signals came as soon as we checked in to the hotel. The organiser, an eminent dietician at whose feet the gluten-free families of our city worship, turned out to be very overweight. Look I'm a bit podgy myself but I'm not trying to make a living out of controlling other people's diet. "Hi, thank you for the advice about GFCF, have you ever heard of an amazing thing called calorie and portion control?" Secondly, when we arrived back from dinner she was standing outside our hotel room talking in a loud voice. She moved to let us past, saw us go inside and then continued to talk for..ooh, another hour or so. Her magic diet clearly doesn't teach social sensitivity.

I'm going to not follow the example of the conference, and present a balanced view. I have a fairly open mind about dietary treatment. I have a friend whose autistic children suddenly became verbal (aged five and six) after going gluten-free. Their behaviour improved too. She's not mad, she's intelligently sceptical, so I reckon she's telling the truth, especially as her kids then tested highly, exceptionally highly, intolerant of gluten. Which is the crucial factor. They were gluten-intolerant, in a way that could be scientifically measured. So gluten-free, for me, is one of those powerful therapies which make a big difference for SOME autistic children. But not all of them. Reputable surveys such as CS Kira's work on autism spectrum disorders state that a significant propertion of parents experience NO benefit from these diets, and that there is only a marginal difference between those who say GFCF helped their kids, and those who claim the same result from cutting out chocolate. You know what, cutting out chocolate is less hassle (well, unless the diet needs Mum to follow suit). In other words, the scientific evidence isn't there. Autism takes many forms and I am very comfortable with the notion that some kids respond to diet. Many aren't.

So, what I expected this weekend was a cautiously positive look at the field of biomedical supplementation and dietary management. Because this is stuff that really can help some children. Don't get your hopes up, it's not like we're looking for a cure or anything, but, you know, this works for some kids. Worth a shot. So I sat there, pen poised, interested and alert. We start with some scientific evidence about mercury and autism rates, plus zinc and magnesium lack in kids with ASD. Ooh, scientific rigour. Count me in.

Oh, but hang on. The speaker is taking a different tack. Autism CAN be cured after all. With her help. Amazing stuff. A lot of people who come to these specialists directly after receiving their diagnosis put them on gluten-free, dairy-free diets and the kids learn to talk and interact. Wow. Except that, you know, an awful lot of autistic kids DO learn to talk between the ages of three and five, without changing their diet in the slightest, or taking any of these fancy supplements the speakers are going on about. It's called development.

Things get woollier. To applause and appreciative gasps, we hear how Case Study A started to sleep after starting on the biomedical dietary regime. But hang on, you said you prescribed melatonin. That normally nails sleep problems, whether or not you ban bread and cheese as a midnight snack. Plus, I can't help but notice that as we stop talking about mineral deficiencies and start discussing expensive medications, then suddenly the all the heavy-duty science drops away. There is no data to back up these amazing results, no trials demonstrating the difference supplements or gluten-casein-free made to a set of children. It's all a bit nebulous. "It is IMPERATIVE that you do gluten and dairy free for your child," bellows the naturepath. Really? Without any evidence? You just want us to BELIEVE you because you are speaking emphatically and with a sense of conviction? Like all the worst sermon-writers, you are bossing us around without explaining WHY. It all starts to feel familiar, like being back in church. They show us a picture of an oxygen tank. It will be REALLY good for our children to spend time inside this, we are told. Why? Are we sending them to the moon?

Hey, well, it's harmless stuff, I think, shifting in my seat and biting into one of the free gluten-free snack bars we have been given. My word it tastes revolting. Pretty packaging, though. This is all relatively cheap, right? I mean, if I wanted to change my kids' diets I could just do it, no bread, more rice. Hold on, what's the speaker saying "We encourage parents to do whatever it takes, borrow from their parents, say to people they don't want birthday or Christmas presents, they just want money, take out a second mortgage. Because this is so important to our kids." No. I can't have heard that. The biomedical woman didn't just stand up and say "Take out a second mortgage so you can afford me." Oh my word she did. The brazen cheek of it. For what essentially amounts to some expensive vitamin pills. Suddenly we are on Planet Rip-Off. (Maybe that's why we needed the oxygen tank). I have a revolting taste in my mouth, and it ain't the snack bar.

Whilst I am reeling, we explore Planet Rip-Off a bit further. Amazingly, we should change our diet and take extra expensive supplements rather than Anti-Depressants. (Rather patronisingly, the speaker assumes most of us are on them already because, you know, raising autistic kids is HAARRRD). She explains about all the secret scientific and medical evidence on SSRIs. Apparently, the evidence all shows that SSRIs are a placebo but this has been suppressed because the medical journals will only publish what the drug companies want. Hmm, or possibly the medical journals didn't publish the evidence because it was BAD SCIENCE and didn't meet PEER REVIEW standards for publication. I feel slightly sick at the misleading flim-flam, designed to wean vulnerable women off reputable medication and onto untested supplements.

So I am relieved when the next speaker is introduced. Back to earth. Oh, this will be good, no-nonsense stuff. Chiropractic care has been very helpful to me when I have had lower back pain. She is smily and upbeat with a disabled child of her own. Lovely, heartwarming stuff. Oh, the child is doing really well. Amazing. It's all down to her regular spinal readjustments. This time I am sufficiently peturbed to ask an actual question. Excuse me, I say, many children with her disability do very very well. Is this just one of the children at the high-functioning end of the spectrum for her specific disability, or is she actually showing unusual developmental features? "Oh, she can write. She should have trouble writing." Yeah, but lots of children with her disability have learnt to write. Some take school exams and pass them. Some go to college. "She's such a delight and a blessing." Yes, and so are my children. Even without the constant spinal readjustments. "We need to focus on not doing but being. Enjoying our children in the now." Yeah, too right. I'm gonna focus on not doing chiropractic care.

The day gets more surreal. We do a quiz, and it becomes clear that more than half of the audience are already "doing" the gluten-free, casein-free, supplement-intensive thing. So why are they here? No wonder they are nodding vigorously. They've all signed up, taken out their second mortgages. It all starts to feel very church-like. Preaching to the converted. But they are all so happy and friendly. They BELIEVE, whereas I am scowling in a corner, demanding that we look at the evidence. I feel guilty for my suspicious mind, like a Biblical scholar visiting a convent.

Dutifully, I take notes, and try to pull out the sensible suggestions from the expensive murk. I'm going to get my children's blood tested (free, by the GP) for vitamin and mineral deficiencies. I'm going to find out whether we can get children's dosage of pine bark extract (which has tested in one study as as effective as Ritalin for hyperactivity) here in NZ, and possibly trial it on one of my sons. I also get a possible answer to one of the mysteries that has bugged me as regards my younger two: why their terrible, chronic diarrhoea has largely cleared up the second I cut back on fruit. (I did this because we were skint, and this was a welcome side-effect). It is quite possible that they have some yeast or bacterial development in their gut that may be producing unhealthy bacteria that was messing them up inside. Only thing is, to test this hypothesis according to the doctors here, I would need to send their faeces to an Australian lab. My husband is quite keen on sending faeces to Australia but would rather it went to one of the rival rugby league players that thrashed his team last night. It would cost thousands. For a therapy that will amount to "take probiotics and cut back on fruit."

And that is what leaves me livid. It isn't expensive to tell parents to try gluten-casein-free diets. Iron, vitamin and mineral blood tests are free. Even the fancy stuff, like pine bark whatdoyoucallit, will cost me about thirty US dollars. When you strip away the mumbo-jumbo, what you have is a simple diet and some UNTESTED or UNPROVEN suggestions for minerals and vitamins that may or may not help our kids (Kira's data suggests that most of them don't, most of the time, but it's worth a multivitamin or two to cover our bases). Why the hell have they seriously recommended we consider a second mortgage? Where are these exorbitant expenses going to come in? Their "consultancy" and "tests," of course. I can't help but feel that the rather porky nutritional expert is eating too many pies at her clients' expense.

I am not averse to spending big money on my children. I don't have a job, because right now they need me. We nearly bankrupted ourselves and made the mortgage broker's eyes water by insisting that only this house would do, the one with four bedrooms on one level so that we could all keep safe and the children would stop hurting themselves and each other at night. Ditto the people-carrier, so that they would stop hurting each other whenever we drove. I sold my christening gold coin to pay for a course of therapy when it became clear that one child needed it. I have twice paid eye-watering sums to a London consultant to ensure that my sons were assessed by someone who knew her job. I have bought sensory equipment, paid for unnecessary childcare so my sons could have the sense of a social life. I booked a therapist for my youngest here when we weren't even sure we would be able to pay the mortgage. There were the drum lessons in England, to stop self-harming. The years of private speech therapy, at sixty quid an hour. I grimly go on paying for expensive private swimming lessons because it is clear that even if they aren't going to work, my boys ain't gonna learn to swim any other way. Packed lunches are full of expensive ingredients that are all my boys will tolerate. So yeah, I know about spending money on their needs that my friends get to spend on fun.

But there are limits. A second mortgage, to pay for vitamins? Send my son's shit to Australia to be tested? Isn't there an adequate supply of Australian bullshit already? Their recommendations remind me of the gluten-free snack bar, pretty on the outside but bitter to the taste. When I come home, I research the scientific evidence that we were shown, and discover that even that was misleading and partial. Unless of course the entire autism research industry is engaged in a massive cover-up, as with the medical journals' refusal to condemn SSRIs. Given the amount of money that they are asking, this stuff isn't just misleading, it's dangerous. "I do a sliding scale of payments," one of the speakers assures us. Really? I think. I've just slid right off the end.

I must have looked fairly sceptical because at the end of the day they mysteriously missed me out from the feedback sheets that were passed around. I imagine filling one in. "Stop trying to rob people. Don't use conspiracy theories to sell products. And hey, whilst we're at it, don't talk loudly outside people's hotel rooms late at night."


  1. So good to see a balanced side to the whole diet angle. I wish I'd had a dollar for every time someone suggested GFCF eating!

    My gut feeling (boom boom) is that there are a lot of suggestible people out there who don't quite realise that these developments and changes would happen at a rapid pace anyway. My son has happily chomped through masses of wheat and dairy in his six years, and in that time he has learned to cope with a lot of life's challenges - the only control for me would be a parallel universe, or an identical twin.

    I also accept that there are some people for whom biomedical intervention works, and I'm glad that you make that clear in your article. The amount of money that people are being fleeced for is astounding.

  2. Thank you. Yes, it is the money angle that concerns me. People must be taken for extortionate sums. The friend I refer to didn't spend a penny - she actually ended up with gluten-free stuff prescribed by her GP because the evidence was so compelling. But that's the thing, the evidence.

  3. My son's Paed told me not to muck about with his diet, as she felt that there wasn't sufficient evidence to support behaviour changes/improvements. Besides the thought of him having a blood test is fairly harrowing as he doesn't cope with stuff like that. Sigh.
    People really are gullible.

  4. This is absolutely shocking - it is exploitation of people who may be feeling vulnerable and desperate. One thing, though - she is right about the SSRIs. In trials, they perform no better than placebos for mild to moderate depression. Ben Goldacre's got a little bit about it here:

  5. That's very interesting Kim. I presume he didn't say that all medical journal publications had to be approved by the pharmaceutical industry though?

  6. How Shocking i worry about these People.s Morals. Yes lets Rob people Blind with Skewered Science and pretend to help. Yuck glad you got 2 Nights of sleepo at least.x