Listening to Autism
I assume that these people are not being strictly literal in their complaints, as I listen to anyone who cares to speak to me (and read what people send me).
I suspect that their core complaint is that I listen but don't agree.
Here is the gist of the matter:
Parents have a great deal of observational data about their children - what they do, how they respond etc. - and many of them feel that this translates into understanding their children's emotions and thought processes.
How many of these parents will have cause to question this "understanding" when their children reach puberty?
But, to the matter at hand.
Many parents of autistic children also feel that their wealth of observational data gives them a special insight into their child’s physiology, as well. They feel – and many feel this way because they have been told by well-meaning “experts” – that they know more about autism than the people who study it, simply by the virtue of having “lived with it”.
These parents often lose patience with doctors and scientists who are hesitant to accept at face value the parent’s claims of dramatic improvement with “alternative” treatments or their explanation of what caused their child’s autism. The parents see the doctors’ cautious skepticism as a direct challenge to the parents’ innate knowledge.
Why is it that I don’t “trust” the parents’ stories of how (fill in the blank) improved their child’s autism? Well, at least a part of the reason is the track record of autism “cures”.
As an example, let's review the history of a "breakthrough" treatment for autism: secretin.
Secretin first hit the public scene in 1998, when it was reported that a single secretin injection (done as a routine part of endoscopy) dramatically improved the language and social functions of an autistic child. These initial reports led to a massive run on secretin and a number of studies - good, bad, short-term and long-term - were rapidly started.
The excitement for secretin kept building, even after some initial studies failed to find the dramatic results. In fact, the interest in secretin continues even after a large number of studies, including a focused, multi-center, multi-million dollar study sponsored by a drug company that had the patent for recombinant secretin, have failed to find secretin any better than placebo.
Should I be listening to the parents that believe that secretin improved their child’s autism? Even though well-designed studies sponsored by a company that had every financial reason to want to find an effect failed to find any effect? Would that be wise?
Enlarging the view a bit, a brief survey of parent-focused autism websites and newsletters reveals a dizzying number of “cures” for autism. Special diets, vitamins, minerals, and a growing (and worrying) number of prescription drugs (off-label uses) are being used to good effect, if parental reports are to be taken at face value.
So, if all of these treatments are effective, as the parents claim, then what are we to make of it all? As I see it, there are two overall possibilities:
 Autism can be improved by an amazingly broad range of “biomedical” therapies (as distinguished from behavioral therapies).
 Autism shows a pattern of alternating developmental stasis and progression, which fools parents into believing that the last “treatment” they tried before the improvement was the “cure”.
Interestingly, normal child development shows a pattern of alternating developmental stasis and progression. Most parents are vaguely aware of this, but the parents of children with developmental disabilities are hyper-aware of the developmental progress of their children.
Thus, if a “treatment” is proposed (or promoted) for autism and a large group of parents try it on their autistic children, the possible outcomes, even if the treatment is completely ineffective, are:
[a] If given at the end of a period of progression, the “treatment” will be assessed as having made the child worse.
[b] If given at the end of a period of stasis, the “treatment” will be assessed as having made the child better.
[c] If given in the middle of a period of stasis or a period of progression, the “treatment” will be assessed as being ineffective.
Remember, these are the possible outcomes even if the treatment is utterly without effect (either good or bad).
Hopefully, you are getting an idea of why I don’t put a lot of stock in parental reports of “treatments” for autism.
Let me try to explain the parental fervor for some of these “treatments” with a small fable.
The Tale of the Lucky Stockbroker
Long, long ago, a smart fellow decided that he would try to make a lot of money in the stock market. Having watched the market for some time, he realized that the best way to make money on stocks wasn’t to buy and sell them, but to sell expert advice.
Knowing that most people who invested in stocks were wary of advice, he set out to prove to people that he had a special power for knowing when stocks were about to go up or down. He got a list of a ten thousand people who were avid stock traders and sent each of them an e-mail describing his services (and fees) and giving them a “sample” stock pick.
Half of the prospective customers got an e-mail saying that the stock would go up in the next week, and half of them got an e-mail saying that the stock would go down. At the end of the week, the stock he picked had gone down, so he sent another e-mail to the five thousand people who had received the “correct” stock advice.
Half of the five thousand got an e-mail saying that another stock would go up in the next week; half got an e-mail saying it would go down. At the end of the week, he sent out another e-mail to the remaining 2500 would-be customers.
At the end of six weeks, he was down to a little over 150 potential customers, but those 150 has seen him make six correct stock predictions in a row! The last e-mail he sent them was to tell them that they could continue to get these predictions only if they bought a five-year subscription to his service.
In autism therapy, much the same system is at work, although I don’t claim that anyone is doing it deliberately, unlike the stockbroker in the story. Parents who get results will convince themselves that the “treatment” is working. They may have seen improvements in the past, but without a “treatment” to hang them on, these improvements would have seemed maddeningly random (as, in fact, they are).
The parents who don’t see any improvement will quietly drift away from the “treatment”. If they choose to tell other parents that the “treatment” didn’t work for their child, that is easily explained away by “every child is different – you need to find what works for your child”. And so, they head off into the sunset on a search for the “treatment” that will work on their child.
When you take in a broader view of the autism “treatment” landscape, it seems painfully clear that this is happening. Every therapy has its own group of parents who swear that it has “cured” or “recovered” their children. And each therapy also has a rather pitiful group of people who haven’t seen the “cure” yet, but are hoping that it will happen soon.
And there are dozens (if not hundreds or thousands) of “treatments” out there that are just like secretin – a few anecdotal stories (or even just one), a hint of biological plausibility (which, given that nobody knows what autism is, can be pretty vague) and a cluster of “me too!” stories.
In fact, even though secretin has been very thoroughly shown to be ineffective, there are still large numbers of “alternative” practitioners using it to “treat” autism. Apparently, no amount of good science is going to penetrate the core believers.
Unfortunately, most of the other “treatments” for autism are not going to get as thorough scientific evaluation as secretin did. Many of them have so little “biological plausibility” that no real scientist is going to want to bother submitting a proposal to study them. The rest have so little biological plausibility that they don’t even seem worth debunking for the fun of it.
And, given what happened with secretin, why would anyone bother? If people are going to “listen to autism” and ignore the science, what’s the point?