Autism hits poor the hardest
Tuesday, June 10, 2008
By: Jane Cutter
Early treatment effective, but prohibitively expensive
Imagine that your child is seriously ill. The doctor makes a diagnosis and says that if you provide intensive treatment right away, your child’s health might significantly improve. However, the treatment is not covered by your health insurance and the cost for a year is greater than your annual salary. Meanwhile, you watch your child slip away from you.
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Early intervention can help children
with autism, but is too costly for
most working-class parents.
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This drama unfolds daily in the homes of working-class families with children diagnosed with autism.
Autism is an umbrella term for neurological disorders that are characterized by social and communication difficulties. Autism is now understood to exist on a continuum or a spectrum. Some people with autism experience extreme developmental delays, while others function highly. The diagnosis rate for autism spectrum disorders has skyrocketed in recent years. As many as one in 150 children are now diagnosed with the disorder. Just 10 years ago, the rate of diagnosis was three or four in 10 thousand.
The scientific community is divided on the cause of this increase. Some see it as the product of greater awareness and improved diagnostic tools; others posit an environmental cause. Regardless of the cause, thousands of families are coping with the challenges of parenting a child with autism.
Along with increased awareness about autism, researchers have come to realize that many people on the spectrum have a much higher potential to contribute to society than was previously believed. Adults with autism are writing books, conducting scientific research and creating powerful works of art.
The key to the success of these individuals has been access to intervention treatments. In some cases, these include adaptive communication technologies for non-verbal people.
The consensus among autism researchers is that early intervention works. While not a cure, such intervention can make a difference. Sadly, it is also very costly.
One form of treatment considered a "best practice" for pre-school children with autism is "Applied Behavior Analysis" therapy. ABA is often conducted one-on-one for hours at a time, as children learn self-care and communication skills they might not otherwise acquire. Private ABA therapy can cost upwards of $35,000 a year.
No one would begrudge the ABA therapists a living wage; however, given that the therapy is often not covered by health insurance, it is out of reach for all but the wealthy. Families with moderate resources have been known to make extreme sacrifices to pay for treatment, such as taking out a second mortgage. But for poor and working-class families, treatments must be patched together from school districts, community programs and whatever their health insurance will cover. According to University of Washington researchers, parents of autistic children experience the highest levels of stress, depression and anxiety among all parents of children with disabilities.
Autism is found in all sectors of society. Even for parents with financial resources, parenting a child with autism is a challenge. But while wealthy families hire private therapists or send their children to special private schools, poor families with autistic children must depend on already underfunded school district special education programs.
There is no objective reason why all people with disabilities, including autism, cannot receive the educational support needed to be able to achieve their full potential. There is no lack of resources in the United States to provide proper care for them. The only obstacle is its economic system, entirely based on profits, which keeps effective treatments away from people who need them.
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