Daily Mail article - "The Great Autism Rip-off"

[TotalChaos]

www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---How-huge-industry-feeds-parents-de sperate-cure-children.html

Interesting but rather one-sided as written as an "expose" of alternative practitioners and "treatments" for ASD. A shame that they didn't present information about the less controversial therapies/ideas that are primarily not available on NHS.

I would agree that if more educational and therapeutic interventions were available in the mainstream, parents would be far less vulnerable to these practices. Parents of ASD children are often viewed as lonely gazelles who are easy meat for those looking for a fast profit without a requirement to provide evidence for their supposed 'cures'. But why are parents left so exposed in the first place?

I've heard of cases (anecdotally) of families who have spent a whole year's DLA on useless treatments. I hope the salesmen are happy sipping their cocktails by their pools in California or wherever. Of course parents have the right to consider different treatments but it's very important that those sell these approaches are as strictly regulated as possible and that they don't make false or misleading claims.

Fish Oil is fine ( I think) and I don't see the harm in auditory integration treatment as long as parents can try it without signing up for too much in advance. Experiments are fine, there was no evidence that streptomycin would cure TB until it was tested in the field but the product was based partly on blue sky research but also rigourous scientific and rational deduction.

Well there were a few things wrong the article. The boy dying from chelation therapy for example- he didn't die because of chelation - he died simply because the wrong drug was given. Something which happens repeatedly in the NHS btw.

Also the use of Jacqui Jackson was a bit weird a as she is well known for using one 'non-proven' alternative therapy - the gluten and casein free diet.

If the NHS was more proactive - and if NHS doctors kept up to date with the latest research, then parents wouldn't pay lots of money for this this to be done privately. There is a lot of research out there now that is quite clear that autism in may cases, is a Biological and physiological condition. Levels of vitamins, pathogens etc are commonly completely up the creek in children with autism. If the medical profession paid attention to that and worked with the parents then there would be no need for them to come into contact with the unscrupulous (and I wouldn't call everyone on that list unscrupulous- the woman in Bromley is an NHS GP for example- and there is some evidence that HBOT works for some children - not enough evidence for me personally to try it with ds1 but I can understand why people do).

Tclanger- Lucy Blackman is severely autistic and can't really talk properly but she has written several times now about how AIT helped her process language and led to her developing the speech she has. She;s quite insightful into the effect it had (basically it completely affected her sound processing- she talks about pre- and post AIT). Mind you although she now types independently for many years she needed facilitated communication which is also dismissed as hogwash (presumably we ignore the people who can now type independently and are clear that they needed FC for a while and pretend they don't exist )

Ds1's current pead is quite open to alternative ideas and treatment. I am making a list to bombard her with at the annual review.

I think there is definitely a lot of nonsense spoken about autism: - someone just helpfully (!) sent me a link which suggests that autism is due to some "ancient inherited trauma from long ago in the family's history". And the cure? A massage, manipulative, relaxation-y type therapy. FFS. IMHO autism is a genetic brain condition/disorder you are born with, or you are born with as latent and then some external trauma triggers, and we will in 10 years understand it (and maybe hopefully even treat it) just like today we can treat or at least medicate schizophrenia. I think there may be an autism which also links to bowel problems, but the quacks who try to sell me hugely expensive vitamins and supplements from the US are just whistling in the wind (I repeat, this is just my opinion and I don't judge anyone else trying to make it in their own way through this thing called autism.)

Although schizophrenia has now been shown to have a biiiiig link with the gut.......

Some of the comments at the bottom were a bit weird too. 2 'helpful' posters had nothing to say about the article itself but were quite happy to call Jacqui irresponsible for having more than one child with ASD. Let's all go and get ourselves sterilised now, shall we?

At IMFAR there was quite a bit of research on oxidative stress and autism. Which will be why people try vitamins. Gut problems also prevent the absorption of vitamins (and lots of autistic children are very deficient in some). If your gut is knackered then pouring lots of expensive vitamins down your neck might not be the answer though.

But this is the arena of conventional medicine- or at least it should be- there is no reason why NHS doctors shouldn't be better informed in this.

Personally, having been to IMFAR and having listened to /spoken to some of the researchers there if anyone is interested in biomed stuff then I'd recommend getting a copy of Natasha Campbell MCBrides book and following her advice. It's not expensive and the worst it will do is ensure your child eats healthily. She's medically trained with post grad qualifications in neurology and nutrition and the mother of an autistic child.

Autism Speaks (a US site) has the definitive answer - Autism is causes by Pet Shampoo - at least that is the latest theory. So get those pets chelated ! ALthough the I think the governing body for vets is more pro active than the doctors one !

I'd use it with ds1 if I could persuade him to wear headphones

There was quite a bit of research at IMFAR on sensory processing as well, so who knows, perhaps things like AIT will become more mainstream. Again this is something that I think should be offered in some easily accessible and monitored way.

I thought about forming some sort of group where we could each learn these various techniques and then supply them at cost price/free/for a donation or whatever. But it would be difficult to organise.

Now I just need to persuade the paed to do some sort of carnitine trial with ds1........... (was recommended it by someone doing proper peer reviewed research in autism, and his model fits our family especially well, I asked how to get it- he said 'go to a doctor do it properly', so lets see if that works in the UK - this researcher is not UK based).

I went to the pet shampoo talk at IMFAR. It was one particular chemical. And it was something to do with the dose. So if you get a blast you're fine, but a chronic exposure is more of a problem. IIRC. But I saw a lot of talks in those few days.

Here's the pet shampoo abstract:

I. Hertz-Picciotto , Public Health Sciences and the M.I.N.D. Institute, University of California at Davis, Davis, CA
I. N. Pessah , 3 Department of Veterinary Molecular Biosciences, University of California at Davis, M.I.N.D. Institute, Davis, CA
R. Hansen , Pediatrics and the M.I.N.D. Institute, University of California at Davis, Sacramento, CA
P. Krakowiak , M.I.N.D. Institute, University of California at Davis, Sacramento, CA
Background: Pesticides affect a number of targets in the CNS, and cross the placenta. One previous report suggests a link between maternal residential proximity to commercial organochlorine pesticide exposure during early prenatal life and the risk of autism. That study did not evaluate individual exposures to household pesticides.

Objectives: To examine household pesticide use during the prenatal period or early postnatal period in relation to autism.

Methods: Participants were from the CHARGE (Childhood Autism Risks from Genetics and the Environment study, a large population-based case-control study in California. Autism spectrum disorders were confirmed using the ADI and ADOS. Mothers were extensively interviewed regarding demographics, lifestyle, and prenatal and early postnatal exposures of the child. Questions addressed use of numerous household products, including insecticides for flies and ants, pet shampoos, and weed control products. Interview data were available for 333 ASD cases and 198 confirmed typically developing controls. Logistic regression models were adjusted for family socioeconomic status. An index exposure period was defined as three months prior to conception through the child's first year of life.

Results: Mothers of ASD children were twice as likely to report using pet shampoos for fleas or ticks during the index period as compared with control mothers: adjusted Odds Ratio (aOR) = 2.0, 95% Confidence Interval (CI) = [1.2, 3.6]. When examined by trimester, the strongest association was during the second trimester: aOR = 2.6, 95% CI = [1.3, 6.0].

Conclusions: The higher prevalence of self-reported use of pet shampoos by CHARGE study mothers of children with ASD could be due to reporting bias, although many other products did not show differences. Pyrethrins have largely replaced organophosphates for flea control, but early life exposure to pyrethrins has been shown to compromise the blood-brain barrier in rodents, raising concern about prenatal and early postnatal exposures.

There was a LOT at the conference about environmental triggers btw.

There is someone locally who offers it. But she was charging a ludicrous price (to lend you the stuff to do at home) and when I questioned her knew bugger all about autism.

We are a bit stuck with the environment though. The frozen body found in the Alps (5000 years old) had high levels of heavy metals in his body. The air we breathe is the main source of mercury which is why it is present in breast milk. I don't think anyone is suggesting we can live without an environment however safe an arrangement like that might be. There might be triggers for ASD, there might not be, only time and research will tell - on the other hand more research and knowledge on early detection of ASD might make it easier to rule out triggers said to occur at a later stage.

Well I don't know- there was plenty about the sequence of triggers needed to set of autism (mostly discussed in combination with genetic predisposition). I think it was in the pet shampoo talk that the point was made that this was something that would be easy to avoid.

I almost certain that had ds3 had the same environmental exposures to various things as ds1 he would have been autistic. He still has plenty of things that physiologically are not quite right but developmentally he's OK.

My nephew has autism, and my sister has gone to a few DAN! conferences. I don't actually believe that you can become a DAN! doctor just by going to a conference.

The problem I have with a lot of these docs/nutritionists is that they come up with the same solution for every kid. For instance, I was recently recommended the gluten free, casein free diet even AFTER telling the chap that I had tried both and neither had made the slightest bit of difference. And even when I had answered a lot of liver/allergy/kidney function type questions in the negative (eg is his skin yellow in colour, do the tips of his ears go red on eating certain foods, does he get a rash after swimming etc etc). Even after saying "no" to all these, the man blithely continued to recommend some liver and kidney "supporting" enzymes, available from a lab to which he had financial links. I would get a prescription from them each month and buy a whole load of vits for ever more. To me, all autistic kids are different and they are trotting out the same old recommendations as if they had some kind of magic potion. My ASD step daughter, who was fairly severe at 5, is now in mainstream unsupported and doing really well - she had no biomed interventions, I think it is just the luck of the draw that her autism took this particular course. I also get very annoyed when these people prey on folk who have little enough money to start with, and to my mind they give them false hope of miracle cures.

Sorry, haven't read all of this carefully. But to add to the AIT stuff, I know someone who is CONVINCED that it harmed her child with ASD and that he became less aware and more sensitive (iyswim!).

I feel that the magic cure approaches are based on the false assumption that ASD children never develop (unless given an intervention) but this isn't true. All ASD children will develop over time and some will make significant progress and may even pass for NT - but that is most likely due to the specific nature of the underlying disorder itself. Up to age 5 or so, it is virtually impossible to predict which will progress and which will not (progress as much). Early educational intervention can accelerate progress in most cases.