As noted in a rescued diary today, many states have passed or are considering mandating coverage for autism by private insurers. In this diary I point out some possible unintended consequences of these bills, and suggest some helpful directions.
First, I should tell you a little about myself. I have an autistic son who is now a young adult. That means I remember the bad old days where a mid-size city like Portland, Oregon served fewer than 20 children in specialist classrooms, and only those with additional mental retardation were eligible. What was done in those classrooms was containment not education. For other children on te spectrum, there was nothing. It was parents from my generation who became activists to force school districts to recognise the numbers of children on the autism spectrum they needed to serve, and to push for effective and humane education.
We aren't there yet, as any parent who has fought the system knows.
Like everyone else, we also experienced our son being excluded from receiving speech therapy, physical therapy, occupational therapy, and ongoing care by specialists because of autism. In fact, he could receive little routine medical care either, unless we could pay out of pocket, as autism has been an excluded condition on most insurance plans since forever. You'd be surprised at how many health problems, when the person who has them has an autism diagnosis, are suddenly attributed to the person's autism by insurers, despite the fact that none of them are part of the diagnostic criteria. Like most doctors, ours did their best to find ways to serve our son. He has dyspraxia as well, which WAS covered, and allowed him a grandiose six weeks of service from BCBS at one point. That's not enough. So I definitely support the removal of autism as an excluded condition. It's like mental health parity, an issue of basic fairness.
Fast forward to today. I now work in autism research. My main area is education, the only thing we know of that actually works to help all children with autism. And here's where those unintended consequences come in...
In the US, most of the medical therapies children with autism receive are delivered through the school system--speech, OT, PT. If insurance starts covering these, expect districts to start expecting parents to have insurance so they can bill it. This is going to be a stretch, as many of us have had to give up work or have foolishly spent our savings on the last eight fad treatments. I don't say that to blame anyone. I did it too for a couple of years, though not to the extremes that some have gone. You want to help your child, it's human nature.
Second, most of the therapies our children receive through the education system do not meet the standard for evidence-based medicine. That's because they're not medicine--despite the use of sciencey talk about "trials" and words like "treatment," therapy," and "intervention." This includes ABA (Applied Behaviour Analysis), no matter what those who try to sell it have told you. We know this in education research (outside of those departments set up by behaviourists), although we also know it includes some useful techniques that any teacher or parent should know about and use. But the results reported by the few half-decent studies don't hold up under statistical scrutiny. I know this, because my team was just involved in doing a heavy-duty scrutiny of those results for a foreign government (not the UK, where I live--I would say, but the report has not been released to the public yet). That doesn't mean that Child A might not benefit, it just means we can't determine from the research whether Child A's experience is definitely because of ABA or something else, or whether it will apply to Children B through Z.
And here's the thing: Insurance companies live and die by evidence-based medicine. They just won't add unproven treatments to their coverage and leave them there for long, regardless of public clamour.
For years, I have been waiting for school systems to stand up and say the emperor has no clothes, but that's harder to do. Parents and school district employees know each other as people, and besides, ABA is a valid educational method, amongst many. For certain children, it may be the best one. I believe it will now be the insurance companies, or the big HMOs in response to rejected claims, that will do this. I know that Kaiser, for example, has been conducting internal investigations of autism "treatments" since the late 90s.
I won't mourn the demise of ABA as an industry, having seen too many families bankrupt themselves for little gain, and knowing too many adults with autism who speak movingly about the humiliation and harm they suffered by being forced to comply with an adult's seemingly nonsensical wishes for 40 hours per week in poorly designed programs run by half-trained half-wits. I'll be sorry to see the loss of the better aspects of the approach, and the benefits of well-designed and respectful programmes run by good staff, if the baby is thrown out with the bathwater.
And by the way, it's not just ABA. The research evidence for sensory integration therapy is even worse. The research on SLT, PT and OT techniques that are autism-specific is also not as robust as most people think. TEACCH, the set of educational methods and principles that is usually put forward as an alternative to ABA, has been very poorly researched as well, since the university department that created it has a sweet deal with the state where it's located that means it doesn't have to do such evaluations. In fact, the research into the only actual medical treatment--the drug rispederone, which got fast-track approval in the US as a "treatment" for challenging behaviour in people with autism a few years back--is even more distressingly bad. A tiny study group, no long-term studies, etc.
The solution is to start funding research into approaches that help people with autism who are alive today: education, speech and language therapy, physical therapy, occupational therapy, and I think sensory work as well--the evidence works for me, because it comes from people with autism as well as parents and therapists. We need well-designed, long-term studies, based on current knowledge about people with autism (and the sub-groups that are slowly emerging), and as uncontaminated by financial interests as is possible.
We need to let go of our addiction to spending billions instead on genetic research that, while fascinating, adds nothing to my son's quality of life, and never will.
And we need to stop telling parents that their child is only worthwhile if he can be "cured" or made "indistinguishable from his peers." Because until we get there, the pressure will always be one to spend money chasing miracles instead of doing the hard graft required to individualise educational approaches that work for each individual child on the spectrum, and to provide the support and services required for children, adults and their families for life.