Beyond Early Diagnosis of Autism

In late October, the American Academy of Pediatrics took the important step of recommending that all pediatricians screen for autism spectrum disorders when children reach the age of 18 months and again at 24 months.

With autism spectrum disorders affecting 1 in 150 of our children according to the Centers for Disease Control, this is sound medicine and smart policy. Pediatricians will now be asked to thoroughly review a core developmental checklist. Is the child talking by age 2? Is he or she pointing with his finger and trying to draw others” attention to what interests him or her? Is eye contact established routinely? Has he or she ever lost any motor or verbal skills that were once evident? Does the child respond to his or her name? According to Dr. Jose Cordero of the CDC, in recent years only about half of all pediatrician offices have gone through such a developmental checklist, so there is ample room to improve.

The average age of diagnosis for autism disorders in the United States has remained at 3 to 4 years of age, and even later for children living in socioeconomically depressed and rural communities, despite the attention this neurological problem has received in recent years. In most cases, a trained clinician can detect the early signs by age 2 or even 1½. In fact, some early warning signs can be detected prior to 12 months of age. The new policy should help improve the typical age of diagnosis.

Some pediatricians will be unsure of their abilities to differentiate between cases of slightly delayed development, on the one hand, and autism problems on the other. But they simply need send borderline cases to specialists for further evaluation. The core therapies for individuals with autism disorders are cognitive — behavioral intervention with one-on-one, step-by-step instruction, structured or facilitated play, simple social activities, and language and occupational therapies. So there is no real downside in erring on the side of a few false positives; children will not be harmed by receiving such therapy for a few months even if their issues turn out to be transient developmental delays.

But greater emphasis on early diagnosis is not enough. The whole point of diagnosis is to ensure children with autism disorders have the benefit of intensive remedial therapy early in life. While an individual with an autism spectrum disorder has the potential for progress at any age, prospects for major improvement are far better in the early years, when the brain is still “plastic” and social skills have not yet begun to lag severely behind peers. Intensive intervention programs of at least 25 hours per week, beginning by age 2 or 3, can result in significant progress for nearly all children, as the National Academy of Sciences and other organizations have documented. In fact, 30 to 50 percent of children can be mainstreamed in school without aides by the time they are 7 or 8 or 9 after such intervention. Without it, there is little prospect for such progress.

Yet specialized education and therapies for young children on the autism spectrum are not routinely available or affordable today. Some states such as California have more comprehensive infrastructures for education and treatment although significant gaps still remain even there. Some counties in states like New Jersey provide intensive early intervention as part of their preschool curriculum for children with ASD; the rare private company or health insurance provider may cover these therapies too. But with their costs often exceeding $50,000 a year, and the basic services falling somewhere between rehabilitative medicine and education in the eyes of most insurance companies, reimbursement is commonly denied — making them fundamentally unaffordable to most parents.

Some 25,000 children a year are diagnosed with autism and of them, only 10 to 20 percent receive the early intervention they need based on research-based best practices and standards.

Despite the claims of many insurers, intervention therapies work well and can no longer be deemed “experimental.” Autism is a brain-based disorder that an insurer should handle no differently than any other neurologically disabling condition.

Fixing this problem will be expensive in the short term, with the national costs of comprehensive early intervention up to $5 billion annually. However, intensive early intervention can save significant costs over a lifespan, increasing the prospects that higher-functioning individuals can hold jobs and live on their own.

There are many possible paths to a policy solution. The most plausible, in our political and health care and educational system, is a state-by-state mandate on health insurance providers to cover these programs. Several states have recently effected such mandates, but progress is slow. A national movement is overdue.

The dark ages of autism are over. It is a new era of increasing awareness, earlier detection, and expanding basic and applied research. But we must redouble our efforts to ensure both early identification and early intervention services are available to all our nation’s children.