Parental beliefs about autism.
A study published this year looked at parental beliefs regarding the;
etiology, diagnosis, and treatment of autism spectrum disorders.
It found some interesting stuff that not only turned a spotlight on the beliefs of parents but also gave a little perspective to the ‘thiomersal/vaccine’ believers and the prominence (or otherwise) of their role in the wider community. It was also interesting to me as just over a year ago, I reported on a study that looked at the type of treatments parents used in connection with their autistic kids.
In that survey, detoxification (including chelation) was the least used treatment coming in bottom across groups of treatment and groups of autism ‘severity’ (as judged by the researchers). I was interested to see how things had changed after a year or so.
In this survey, 26% of parents believed there was a specific cause or contribution to their child’s autism. 45% answered ‘maybe’. That’s a frustrating example of a poor question. ‘Cause’ and ‘contribution’ are two very different things. It would’ve been better if the research team had separated those options. But that’s what we have.
In terms of those causes, vaccines and genetic predisposition stand almost neck and neck at 29% and 26% respectively. Other options included mother and/or child environmental insult, pregnancy complication, antibiotic taken by child, other medication and prem birth. Me? I’m with the 29% who obviously answered ‘I don’t know’. I’m not aware of anyone who thinks autism is strictly and only genetic and as we know the people who believe autism is strictly and solely vaccines are kooks like the John Best’s of this world. As far as I can see, the twin studies quite clearly demonstrate that genes _and_ environment play a part. Anyone who believes its definitely one or the other needs to clear their head and think again.
87% of parents reported having used a CAM (complimentary/alternative medicine) based therapy with the average number of treatments tried being 6.
This is the most interesting (to me) part of the survey. It’s like a look at the Spectrum of Biomed and based upon it I’m going to start classifying biomed based beliefs where Bio(Dtx) – which refers to the detox parents – is the most severe form of biomed and Bio(Diet) -which refers to parents who stop with GFCF etc – is the least severe. I really suggest you download this whole file and read the table on page 6.
First up we have the Bio(Diet). This is simply stuff like GFCF or other restricted diets. I can’t see what the issue with this is at all. I also can’t see how its an autism treatment particularly. Most kids would probably benefit from a reduction in carbs or sugars. My daughter has Aspartame banned from her diet. Not because we believe there’s a Illuminati plot to control the world via sweeteners but because it gives her headaches and makes her go hyper. I’m not keen on it myself.
However, we need to be clear – the efficacy of these diets is not in question (to me). What _is_ questionable is calling it an _autism_ treatment.
After that we have what I’m going to categorise Bio(supps). This is edging very slightly into woo territory now. Some of the stuff is probably useless but also non-dangerous (extra Zinc, Folic Acid etc). It may improve health, but does it ‘improve’ autism? I don’t see how. Also, the option ‘megadose vitamins’ is in this category and that treatment has been known to hospitalise autistic kids on at least one occasion.
After _that_ we get into genuine woo in a big way. This is Bio(Dtx) and encompasses the detox options like chelation as well as things like AIT and Homoeopathy as well as things I’d consider ‘nice’ but not ‘treatment’ such as music and dance therapy and swimming with dolphins.
Lastly, there are the Bio(meds) people. These are the people who use Neuroleptics and anti-depressants. Not sure we can call this woo as such but its definitely questionable as to merit.
Across those four groupings, the Bio(Dtx) crowd were in shortest supply. This was very reassuring to me. It gave me some perspective about how well represented this particular group were in the wider autism (not autistic) community.
They’re small. Things haven’t noticeably changed in a year. They still make up the smallest percentage of Biomed parents (chelation users stand at 13%, less than AIT users). Its a much smaller group than last years survey (77 vs 500) but last year chelation users stood at just under 8%. They’ve progressed by 5% in a year if we discount the influence of a such smaller population.
Because I tackle these people head on, there’s sometimes a tendency to think of them as having more influence than they actually do and them being in greater numbers than they actually are. Studies like this offer some perspective as to the real size of these organisations populations.
That is _not_ to say we in the more sceptical community should ignore them – not at all, they are dangerous zealots with a penchant for absolutism which must be constantly countered – but maybe we should remember that their influence is not as great as they like to think it is.
This paper also has some interesting things to say about the role of physicians in diagnosing autism. This is beyond my remit but I would like to see Orac or NHS Blog Doc taking them on. Especially the parts suggesting doctors should accommodate altie therapies.
Left Brain Right Brain 
Very interesting—would like to know about the population of parents asked.
“Lastly, there are the Bio(meds) people. These are the people who use Neuroleptics and anti-depressants. Not sure we can call this woo as such but its definitely questionable as to merit.”
I do not consider us to be “Bio(meds) people”, but our son does take both neuroleptics & antidepressants because of debilitating anxiety from the OCD component of his AS. Believe me, we did not want to do this, but B does not function without this sort of support. He also is receiving cognitive/behavioural therapy from his child psychologist & we use behavioural charting & other non-meds-based approaches as much as we can to help him. We are working with a new psychiatrist to try to get him off of the seroquel, because we are concerned about the health problems associated with neuroleptics. However, there’s no question in my mind that my son would not be able to attend school or have a functional life without the support of his medicines. I certainly love him for who he is, & I do not see these medications as a “cure” for his autism, or that he needs to be “cured” in the first place. I just want him to have a life without overwhelming anxiety. Our main hope is that he’ll be able to cope with the anxiety with less or no meds as he gets older.
– How many parents are part of the “Autism Omnibus†procedings?
4,750 pending cases?
Assuming there is somewhere between 300,000-500,000 kids on the spectrum (U.S.), the pending cases represents anywhere from just under 1% to about 1.5% of that population. If that seems significant, consider that 98.5% to over 99% are not such cases.
Lisa-
We used SSRI’s for about 18 months along with therapy like you are. Eventually we were able to stop meds as she could cope on her own. We had some anxiety, as these drugs have not been well-tested in kids. It is just very hard to recruit parents of healthy kids to participate in drug trials where there is no real benefit for them.
The use of neuroleptics as anti-anxiety drugs is, to say the least, overkill to begin with.
This survey didn’t address perceived causes of regression specifically, unfortunately. It would’ve been nice to compare. I’m guessing these have changed from half a decade back and vary between Europe vs. the US. For example, this survey and this survey had previously found that family stress was thought to be the most common trigger, more common than vaccination.
I think that a lot of the reason why so many parents give credence to biomedical explanations of autism is that it empowers them to do something for their child. What can you do about genetics?
But the reason they need this is because the provision for autistic kids is so piss poor it is up to the parents to do something. I cannot change my genes but i can change mu kid’s diet.
Mainstream autism organizations need to do more to campaign for improved services and give parents a sense of ownership and control so they are not led down the wacky road to Woo.
It is still very much the case that the triad of impairments in the UK comprises of Health, Education and Social Services.
Hi Kev,
Were the time frames similar in the two studies? Now that I am looking at it I see this one is from a 2002 survey so I’m not sure if it tells us much about current trends. Do you have a link to the other study?
Mike:
Provision is poor and real knowledge is scarce and it does create an environment where its easy to turn to woo. We do need better services and real knowledge – maybe the recent attack on current provision might yield something? Who knows?
NM:
No, they’re very different studies the earlier one indeed being a survey. I’ll track down a copy and mail it to you.
One of the worst things that doctors do, from the way that parents report… is they give a worst case scenario prediction for the child’s future. “Your child will never talk, you should be grateful even he’s ever able to answer to his name…”
Why wouldn’t the parents be ready to follow after a Buttar type, someone who says, “Those guys don’t know what they are talking, about, I’ve seen dozens of kids go from “lost cause” to absolutely normal, better than normal, in fact, unless you dither and wait too long to make an appointment with me that will cost you $800 an hour.” That only works on better-off parents, though. The quacks aren’t slumming looking for low-income parents to help.
But Mike’s point is correct there is next to nothing sensible available for the vast majority of the parents. My ASD child had a little speech therapy, some physical therapy and a tiny bit of OT, and it was all paid for, no problem, but my ASD child didn’t have extensive speech problems. Xe had learning disabilities that were managed adequately by me and the schools until junior high age, and then the schools had no idea what to do for this kid… which is the typical thing for special ed kids.
What the biomed quacks say to the parents is no much worse that what the Lovaas ABA folks say… that 40% of the kids who get 40 hours a week of ABA starting early enough will end up “indistinguishable from their peers.” As stressful as it is for kids to have nasty tasting potions squirted down their throats, it must be heinous to have ABA therapists in one’s home 40 hours a week, for everyone in the family, but especially for the ASD kid. Steven Guttstein (RDI) is almost as bad, offering personal consultations with parents for some gosh-awful amount of money.
Hi Kevin
Great article as usual. I don’t know where to start on this.
Let me be controversial; I don’t reject any “altie” therapy out of hand. All I would say it, tell us what you want to do and, provided there is no obvious harm in the proposed treatment, we will run a big double blind trial. If the treatment works, great, we will adopt it.
They never do, do they.
Also, where I struggle here, is that I am not sure that autistic children need “treatment”. They need support. I suppose that is getting a bit semantic. But I don’t think there will ever be a magic bullet for it, and I still think it is a spectrum condition moving into three standard deviations to the left of “shyness” on the Bell Curve of personality.
John