A parent’s perspective: Rethinking autism therapy

With all the bad news about the increased prevalence of autism spectrum disorders in the United States today, there is nonetheless some good news.  Therapy is improving.  The behavioral school, pioneered by luminaries like Ivor Lovaas and boosted by the writings of proponents like Catherine Maurice in the 1980s and 1990s, has generated very good curricula for teaching children with this set of cognitive issues.  A national Applied Behavioral Analysis Board teaches and certifies therapists.  Meanwhile, the so-called Floortime method, pioneered by Stanley Greenspan, as well as other methods such as Relationship Development Intervention, have challenged the prevailing ABA methodology and led to improved teaching approaches. Many public schools, including those in my home county of Montgomery County, Maryland, have made great strides in incorporating the resulting insights into their teaching.

Cures for autism remain elusive, as does any simple explanation for its causes or greater incidence today. And therapy methods do not generally promise full recovery, even when started early and pursued rigorously. But many children on the autism spectrum can aspire to fulfilling lives with real friendships and jobs.  Even those for whom such goals are too high a bar are doing better than ever before.

However, the costs associated with this therapy are staggering. Unless a parent simply devotes his or her life to the undertaking personally, and gives up any aspirations of a full-time career, the recommended regimens generally require 20 to 40 hours per week of paid, specialized work with a dedicated professional.  Most specialists in the field are hardly getting rich; hourly rates for therapy are typically in the range of $20 to $60 an hour. Yet because the therapy is generally one-on-one, the costs pile up.  Weekly bills often reach $1,000. They can easily reach $2,000 in expensive metropolitan areas, without any gold-plating or extravagance.

This is unacceptable as a practical matter. Because there is no cure for autism, or guaranteed path to quick recovery, and because early intervention is widely recognized as essential to maximize the prospects for progress, therapy in any given child’s life can easily last ten years or more. As children get older, more of the costs are often borne by school districts.  But it remains true that the parents of a child on the spectrum can expect to pay several hundred thousand dollars over the course of the child’s upbringing for intensive therapy of the type now considered necessary.

And here’s the real kicker: even in 2015, most of these costs are still not covered by health insurance. There has been some progress, to be sure. Thanks to the work of Autism Speaks, an advocacy organization, and other key groups, most states now require that insurance plans provide a certain minimal amount of coverage for a certain period of time.  Typically, the pre-school years are covered, at least in part.  The average parent in the average state might realistically hope to have around $100,000 in total therapy costs paid by insurance over the course of a single child’s upbringing. Obamacare has not measurably helped the situation at the federal level; in fact, it may have made things modestly worse, by reducing tax deductions for medical costs like autism therapy. This was not done out of deliberate cruelty, but was seen as a way to generate revenue to help subsidize the basic medical costs of lower-income Americans as required under the Affordable Care Act.

Covering say $100,000 in autism therapy costs is far better than nothing. But it is far less than what is needed. Ideally, insurance plans will become more generous in the years ahead.  However, I also have a recommendation, from the perspective not of a trained expert or therapist, but from a parent who has watched typical autism therapy for my own child for more than a decade and read several dozen books on the state of the field.  It is a provocation more than a carefully developed and rigorously researched proposal–but I think there is something to it.

Over time, I would argue that standard autism therapy needs to move away from one-on-one work between a trained professional and a single child, at least in many settings and cases. Given the number of hours required for these kids to make progress, small-group teaching must become the norm whenever possible. Ideally, one therapist for 3 to 4 kids would make the entire endeavor fundamentally affordable, if still expensive (subsidies could help those with lesser means, even more than is the case today). But even moving to a 1:2 ratio between teacher and student would help greatly.

There are, to be sure, challenges associated with this idea. Matching up kids at comparable skill levels with comparable cognitive abilities would be a massive undertaking.  Logistically, getting the kids to the same place could also be hard.  And parents will sometimes worry about confidentiality issues; they might not want their child’s abilities and disabilities widely advertised to a broad community in the effort to match children of similar capacities so that they can both benefit from a single teacher or therapist.  For certain stages in the typical autism therapy progression, moreover, it may simply not be realistic to work with more than one child at a time.  And for children living in remote areas, or new to a community, or facing other challenges, this idea simply may not fly.

But in many other cases, perhaps in most cases, the idea makes eminent sense. Remember also that a core deficit of most children with autism is the whole suite of social and conversational skills.  Matching kids up with peers can often be therapeutically beneficial for that reason. Indeed, some innovative therapy providers, such as Autism Outreach in Herndon, Virginia, already attempt to create this very dynamic in much of the therapy they provide. But in general in the United States today, one-on-one therapy remains the norm.

Here’s one more specific reason to think that now is the time to change this– the revolution. There could be whole new ways to figure out how to match kids within a certain geographic location that can protect confidentiality, and also let parents do the work themselves, rather than expecting therapists to pair up kids for them. It should be straightforward to develop an app that would allow parents to code their child’s skills and aptitudes and then allow the software to search for children of similar abilities in a neighboring area. Parents could then talk by phone or email or in person and make sure that the pairing would be suitable, before actually embarking on the teaming arrangement. They could also reassess the wisdom of the pairing as time went on.

Perhaps an organization like Autism Speaks could fund the development of such a technology and then attempt to pilot it in one part of the country as a proof of concept.

We have made so much progress in the autism world. But there is so far still to go. And the affordability issue remains one of the central challenges to overcome.  It is time we got after this issue; the one-on-one therapy model needs to be rethought and revised.