Friday, July 07, 2017

The Sell Job: How Autism Professionals Milk Vulnerable Parents of Their Money

Vaccine conspiracy theorists say to 'follow the money'. But if you actually do, you find a very different conspiracy, one that they're actually supporting.

I see this conspiracy as something being done and supported by many groups, including traditional rivals. The goal is quite simple: to get as much money as they can from parents of autistic children. This is an incredibly lucrative thing to do, because many parents are willing to spend more on treating autism than they would on almost anything else. They are willing to open up a second mortgage, to travel long distances, to beg money from their communities, all for the promise of a cure. And they're willing to do this in large part because they've fallen for the marketing.

Autism treatment marketing is more often termed 'autism awareness'. People think the purpose is to make the public more understanding, but if that was the real goal, most of the autism awareness campaigns would be an utter failure. No, the real purpose is to create the image of autism as something that is devastating, something that will ruin your life if you can't stop it.

To do this, they use several tricks. First, they focus the public's attention away from the milder majority. I previously found several studies showing that 66-84% of autistic children have an IQ over 70. Therefore, a representative look at autism should have roughly 2-4 'higher functioning' children for every 'lower functioning' child - this is certainly not the ratio presented by most awareness campaigns!

Secondly, they misrepresent the developmental changes typical of autism. They focus on younger children, implying that most will have similar severity as they get older, even though roughly half of the 'lower functioning' preschoolers will be 'high functioning' by the time they reach school age. (Even in Leo Kanner's original paper, of the 7 children who had any follow-up done, 4 would be considered high functioning by most standards at the age they were last seen. Those four had adequate spoken language and were in regular schooling.) This allows them to take credit for any improvements, even if the rate of improvement is no higher than the rate among untreated autistic children.

Thirdly, they manufacture an increase in autism, by suppressing the existence of all but a minority of autistic adults, obscuring differences in rate of diagnosis versus rate of incidence, and outright claiming repeatedly that autism is on the rise. (It probably isn't, and certainly not nearly as much as they claim.) This has two effects - it manufactures more panic by implying that our society is headed for a new challenge as these autistic children grow up (when in reality we've been dealing with autistic children growing up for a long time), and it discourages parents from looking for lessons from the earlier generations of autistic people and their families, and therefore getting a more realistic idea of the prognosis of autism. For the mercury-autism branch, the claims of an epidemic are also used to bolster their claims regarding the cause of autism (even though this actually works against them as often as in their favour).

Once they've set up the panic, they offer the solution. This is where the different factions diverge. The two main groups I see are biomedical and psychoeducational factions.

The biomedical groups argue that some reversible biological state, such as mercury poisoning or exposure to certain foods, is the underlying cause of autism. As such, remove the proposed cause and the child will improve. Even if logically, the proposed biological condition should have caused permanent changes as well (especially with onset in early childhood, as it must have to cause autism), they will peddle hope in the form of their quack treatment.

The psychoeducational groups argue that specialised educational strategies, usually ABA (although SonRise and Floortime pull the same sell job with a different flavour), can literally rewire the child's brain to be more neurotypical. This claim, unlike the biomedical claims, actually has some support in the research literature, but it is distorted in two systematic ways.

First, the amount of change that can be reasonably expected is systematically exaggerated. This faction frequently presents higher functioning 'success stories' as if they were no longer autistic at all, benefiting from their lack of acknowledgement of higher functioning autism in awareness campaigns. Ivar Lovaas, generally considered the founder of ABA, defined an 'optimal outcome' as being in mainstream classes without an aide and having an average IQ - a characteristic that applies to many higher functioning autistic kids, including Kanner's four cases, while they remain clearly autistic. ABA research has also never followed up on recipients into adulthood, while anecdotal claims often describe adverse effects emerging as recipients of ABA or ABA-like procedures enter adult life (for example, excessive compliance leaving them vulnerable to abuse). In addition, they never acknowledge that the single biggest predictor of outcome in ABA is the child's initial functioning level, meaning that the 'optimal outcome' children were generally already the higher functioning kids when they started treatment.

Secondly, the importance of intervening early is overstated. To hear autism treatment providers talk, even waiting a couple months to a year before starting treatment could mean the difference between severe disability and normal or near-normal functioning. This is not true. The only research that finds a significant difference in outcome for ABA based on age at entry has 'early' and 'late' samples that differ by four years or more in age. And in most studies, age at entry and time in treatment are confounded. (And the lack of longer-term follow up makes it impossible to know if the difference carries on into adulthood.) The nice thing about this piece of the sell job, for autism treatment providers, is that it encourages parents to decide impulsively instead of carefully considering their options. It also increases the likelihood that the parents whose children would have improved anyway will get their kids into treatment before the improvement happens.

Thirdly, they emphasise intensive intervention, even though it's not actually more effective than lower intensity intervention. This high intensity intervention requires more hours of work from paid therapists (thereby increasing their profits), and also overworks the parents, keeping them in a state of desperation. Meanwhile, the stress and exhaustion results in more behavioural problems for the child, which the therapists use as evidence that the child continues to need the treatment.

If you're a parent of an autistic child, don't fall for the sell job! Seek out the stories of autistic adults and their families, and find out what worked for us. Look at their claims critically, and see if you can find evidence for and against what they're telling you. And always remember that your child is a child, not a crisis or a tragedy.


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