Autism Vox

A reason to be joyful

by Kristina Chew, PhD on December 24th, 2006

Two autism fathers mix praise for the passing of the Combating Autism Act (CAA) with a call that greater resources be devoted to autistic children and autistic adults now in an op-ed in the December 24th Washington Times entitled A key achievement of 109th Congress. Michael O’Hanlon is a senior fellow at the Brookings Institution and father of an autistic daughter; he and his wife, Cathryn Garland, wrote an editorial in the November 21st New York Times on the CAA and calling for more attention to treating autistic children. Stuart Spielman, father of a 12-year-old autistic son and autism advocate, contributed to the drafting of the CAA and also to Maryland’s Medicaid autism waiver.

As we work to fund what is authorized by the Combating Autism Act, we also need to turn our attention to the often neglected public policy question of how to help those already affected. This agenda includes everything from improving the quality of adult care for those needing intensive help throughout their lives, to helping autistic individuals find and keep work for which they are best suited, to making therapies more available to young toddlers in the crucial preschool years when the most can be done to help them.

Health insurance companies should be encouraged to cover more therapies “documented to work,” and other states should follow the model of Maryland’s Medicaid autism waiver, which covers intensive therapy “regardless of whether a family’s income makes it eligible for most Medicaid services.”

I am very glad for O’Hanlon’s and Spielman’s call for more resources to be allocated to helping autistic persons now. My son Charlie has been flourishing in his school program thanks to us having moved to a school district with sufficient resources to provide him with an ABA classroom setting with a ratio of 1 student: 1 teacher. Charlie talks, rides his bike, plays the piano, and enjoys a transcontinental airplane ride thanks to all of the intensive teaching he received from the time he was just over two years old.

All autistic children certainly deserve a chance to be in educational programs that will help them to thrive as Charlie has been doing, as do all autistic adults who still need services, too. Charlie is fortunate to live at a time when understanding about and awareness of autism have evolved to the point that we have a better idea of how to educate him, and when he is not sent away to a “school for kids like him” (not that these cannot benefit autistic students), andattends a school in our town where he is regularly seen by the other children, the teachers and staff, and the other parents.

O’Hanlon and Spielman rather write that more educational and other resources are need for those “affected by autism” because there are more such children—because of “America’s autism epidemic”:

Autism spectrum disorders are the most prevalent and rapidly increasing set of serious developmental challenges facing American children today. More than 1 in 200 are believed afflicted, and since the condition affects males disproportionately, that means about 1 in 100 young boys can be expected to display some type of autistic problem early in life.
    Although debate continues over how much of the increase is due to better diagnostics, these statistics constitute much more than a tenfold increase in the reported rate over the last quarter-century.

Note that O’Hanlon and Spielman mention the “reported rate” of the prevalence of autism—this would be the number of autism diagnoses actually reported, but not the actual number, which might indeed to be higher: What about adults who have “undiagnosed Asperger’s syndrome“? Children considered ”mentally retarded” in the past who might today receive an autism diagnosis? Children with speech or language disorders who might also be considered “on the autism spectrum” today? 

 ”1 in 166″ is the oft-cited figure for the number of children estimated to have an autism spectrum disorder today; what if this figure is an underestimate—and what if we see the “1 in 166″ not as an alarmist statement about an “autism epidemic” that requires us to solve the riddle of what causes autism (O’Hanlon and Spielman note theories abotu autism’s cause ranging from “early childhood vaccinations to heavy metals that enter the body”). What if the “1 in 166″ is a sign of an epistemological shift—-an enlightened understanding of what autism and being “wired differently” are?

I will be honest here. I would not be surprised if 30 years ago, even 20 and 15, Charlie was diagnosed with mental retardation and packed off to an institution, never to be seen again except by other disabled adults and by an undertrained staff. Never to be seen by a planeload of passengers, by all the holiday travelers in the Philadelphia and Oakland airports; by so many residents of our town in New Jersey, by who knows who in in New York City. A child Charlie’s age knew about autism when he gave her a tap in the airport today; a child his age recognized that he has autism.

I take joy in that.

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POSTED IN: Adulthood, Airplane, Asperger's Syndrome, Diagnosis, Disability Rights, Education, Genetics, Health, Legislation, Parenting, Politics, Science, Treatment, Vaccines