Autism is one type of brain development disorder characterized by difficulty with social connection, communication, and repetitive behaviors. When very severe it can cause significant behavioral challenges that make it nearly impossible for a family to go out in public, have a peaceful meal, or even be safe in their own home. Autism, along with several other developmental disorders (Asperger Syndrome, Rett Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified), will soon be grouped under the diagnostic label of Autism Spectrum Disorders (ASD) when the new DSM V comes out (Diagnostic & Statistical Manual).
You may have noticed more and more autism awareness ribbons over the past several years. In fact, the Autism Society has been celebrating National Autism Awareness Month since the 1970s. Why has it become such a big deal? Advocates would tell you it’s not enough of a big deal. The most recent reports from the CDC indicate that 1 in 50 U.S. children are diagnosed with autism. It is the fastest growing developmental disability in terms of rate of diagnosis, increasing yearly at a rate of 10-17%. Only 56% of students with autism finish high school. There is a $60 billion annual cost for ASD services. 0.55% of total NIH funding goes towards autism research. 32 states have required that state-regulated health insurance plans cover autism diagnosis and treatment, which includes behavioral, occupational, and speech therapy. This leaves many families to pay for treatment out of pocket. On average, ASD treatment costs a family $60,000 a year, accumulating to more than $3 million in their lifetime. A reporter for Utah’s Salt Lake Tribune found that in a three year period, over 20 local families had to surrender their autistic children to the state because they could not afford ASD services (allowing the state to take custody of a child makes them eligible for Medicaid, which does pay for ASD treatment). Early diagnosis and treatment can not only reduce the cost of lifelong care by 2/3, but can significantly improve their functioning and change the course of a person’s life.
There is no medical treatment or cure for autism, but intensive therapies starting at an early age greatly increase the chances that they can live a life that includes contributing to society, having meaningful connection with others, and living independently, depending on the level of severity of the disorder. Besides the many problems that stem from difficulty connecting with other people, communication challenges, and problematic behaviors, ASD can include other difficulties such as coordination problems, difficulties with attention, and trouble with sleep and gastrointestinal functioning. At its most severe, autism can include self-injury, aggression towards others, eating non-food items, and meltdowns triggered by seemingly nothing at all. And yet, if you do a web search for “life with autism” you will find countless blogs, news stories, books, and blurbs about how autism has changed a family’s life for the better. There are unlimited stories about the amazing kids who persevere despite the challenges of autism. Unlike the statistics above, the joy they can bring into a home is unquantifiable. And that is one of the most important things to know about autism.
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