Michael O’Hanlon is a senior fellow at the Brookings Institution. He and C.A. Garland have a child who has benefited greatly from autism treatment. Dr. Brenda Harris is a developmental pediatrician at Children’s National Medical Center in Washington, D.C.
Thanks to a great deal of recent media attention, millions of Americans now know more about autism and related disorders than they did a few months ago. But many people are learning in a more personal way, because these debilitating neurological disabilities are now occurring in epidemic proportions among the nation’s youth.
There has been an explosion in the frequency of autism, pervasive developmental disorder and Asperger’s Syndrome recently. In fact, at least 25,000 children are now diagnosed with autistic disorders each year.
Thankfully, there is some good news. There are now quite promising treatments for autism, once thought to be effectively untreatable. For example, up to half of those getting early and sustained help wind up being mainstreamed in schools (even if major social challenges often persist for them), and most of the rest do much better than they would have otherwise.
But even the good news has a sad side. Few families can afford the treatments necessary to address this disorder properly. While the spotlight is still on this issue, it is time for policy-makers to act, now, before the moment is lost.
There has been some recent progress. For example, the National Institutes of Health now devotes almost $100 million a year to try to understand the origins and increased incidences of these neurological disorders.
Working toward better prevention must be a key part of any strategy, and our nation is increasingly making an effort to address the problem.
However, for those children already afflicted, it is too late to focus on prevention, and currently unrealistic to talk about any medical cure. What is most needed is remedial tutoring and therapy.
Yet while some school districts provide considerable help for autistic children of normal school-going age, most do not do nearly enough. Also, private health plans and local governments typically do not provide enough assistance in the preschool years, when intensive treatment has the greatest chance of repairing the brain.
That means the best chances for recovery from autistic disorders remain a luxury for the wealthy, because they are often the only ones who can afford the $20,000 to $100,000 a year in unreimbursed expenses commonly required in the prekindergarten years, or the geographically fortunate families who happen to live in school districts where rigorous help is available.
There continues to be debate about which early-intervention programs work best for treating autistic children. Some therapists emphasize ABA, or applied behavior analysis, a method dating to the 1980s, but borrowing some inspiration from how Helen Keller was taught.
It breaks down learning into small steps, and then uses positive reinforcement to teach basic language and social skills.
Another method, called Floortime, builds on a child’s natural interests. As one would expect from the name, adults get down on the mats, following the child’s lead in play. The idea is to nurture creativity, communication skills and interpersonal bonds.
A third method, Relationship Development Intervention, shares Floortime’s emphasis on addressing the core deficits of autistic disorders, but focuses on a parent-led cognitive approach.
The best programs often use several methods, adjusting the balance to the particular needs of the child.
But while debate continues, there is also a great deal of consensus in the field. All early intervention methods require 25 to 40 hours a week for optimal chances of success, as a recent National Academy of Sciences study reaffirmed.
Although many of those hours can be provided by parents, they always require substantial professional help. There is little debate about that. There is also relatively little disagreement among specialists that any type of rigorous treatment is preferable to none at all.
It is no longer acceptable to pretend that the lack of professional agreement over optimal treatment justifies society’s refusal to finance proper treatment. Yet that is exactly the state of play today.
Autistic children typically get just a few free hours a week of intervention prior to the school years, and they often get nothing once in school.
As a nation we have no problem spending $100,000 to help an elderly person gain another year or two of life. Yet we fail to spend a comparable sum for young autistic children with their entire lives ahead of them.
This is unconscionable. It is also bad economics. Autistic individuals who wind up institutionalized can cost society up to $4 million a year, according to the latest studies. Even those who recover partially may have a hard time holding jobs and cost the country hundreds of thousands of dollars in lost income over their lifetimes.
Without further delay, Congress should pass legislation providing at least $20,000 a year for every autistic child needing full-time treatment in the United States.
Those needing less-intensive help could be given proportionately less assistance (and the help could be means-tested to an extent). This would not be cheap, with a total cost of perhaps $2 billion or more a year. But compared to what is spent addressing the nation’s other health-care problems, and, even more, to the human costs of our current approach, it would be a bargain.