Letter | Designation marks need for better understanding of autism

04/07/2014 5:13 PM

04/07/2014 5:14 PM

On Dec. 18, 2007, the United Nations General Assembly adopted Resolution 62/139, declaring April 2nd “World Autism Day”.

Why does this specific disability get it’s very own day? Simply put, autism (ASD) will be diagnosed in 1 out of every 88 children (1 in 54 boys and 1 in 252 girls). The diagnosis of autism or ASD is more prevalent than diabetes, cancer and AIDs combined. Autism does not discriminate and is reported to occur in all racial, ethnic and socioeconomic groups. Autism can present itself with a myriad of symptoms and ranges from mild to severe.

Perhaps one of the biggest problems facing people with autism is their inability to communicate effectively. A very concise explanation of people with ASD was written by the American Psychiatric Association and it states, “People with ASD tend to have communication deficits, such as responding inappropriately in conversations, misreading nonverbal interactions, or having difficulty building friendships appropriate to their age. In addition, people with ASD may be overly dependent on routines, highly sensitive to changes in their environment, or intensely focused on inappropriate items.” Keeping all of this in mind, we must remember that each person with autism is very different and that the disorder is a spectrum disorder. Some individuals may exhibit these symptoms intensely while other will show subtle, less obvious signs.

The good news is that early diagnosis and intervention can significantly and positively affect the child diagnosed with autism. More good news is that greater numbers of children are being diagnosed at earlier ages, one study from the CDC suggests that, “a growing number (18 percent) of them are diagnosed by age 3. However, many still remain undiagnosed until the age of 4 or older.” The same study stated that parents of children with ASD “noticed developmental problems before their child’s first birthday.” This information might lead you to believe that if your gut tells you that something is not right, please investigate further and don’t ignore the early signs.

There are treatment options available that have proven to be quite effective at improving the symptoms of autism. The most notable treatment is Applied Behavior Analysis better known as ABA Therapy. It is a very costly form of treatment for autism. It is a very intensive behavioral intervention for children on the autism spectrum and can run in excess of between $40,000 to $60,000 per year on average. There are funding sources available in the State (PDD Waiver and private insurance in some cases) to assist with cost . With lots of hard work, ABA Therapy, Speech, OT, PT and other interventions, the lives of people with ASD can be greatly improved, however, many remnants of autism related symptoms remain throughout the lifespan making it difficult to navigate “our world.”

Some of those diagnosed with autism will go on to be independent with supports in most cases, while others will need one on one care forever. Most will live at home with their parents or families until that is no longer possible. Housing is scarce and the waiting lists for residential placement are very long. Employment options are extremely limited given the difficulties of placing an individual with autism into the work force without some form of support. With the growing number of young people who have autism leaving school (as late as 21 years old with an IEP), the community is faced with yet another problem - high unemployment numbers within the autism community. “Autism Now” indicated that “24 percent of people with cognitive disabilities aged 16 to 64 work, whereas 68 percent of people aged 16 to 64 without disabilities worked.” Unfortunately, there is not a great deal of data available that really studies the unemployment rate of people on the autism spectrum, however data from the National Longitudinal Transition Study 2, suggests that “young adults with ASD are less likely to work than most other disability groups.”

After reading this and learning more about the crisis facing our world, you might find it shocking that autism is the fastest growing serious developmental disability, yet this disorder receives less than 5% of the research funding of many less prevalent childhood diseases. The total 2012 NIH (National Institutes of Health ) budget was $30.86 billion, of that total, autism research received only $169 million. A slim 0.55 percent of the total NIH funding budget.

It is a growing global health crisis and rightfully deserves its own day. We don’t celebrate this day, but use it to raise autism awareness and to faithfully advocate for those who cannot do so for themselves. Around the world, people who advocate, teach, mentor, and live with people who have autism will use this day to continue to hope for a cure, but until that time, we must work diligently towards giving each person the quality of life they so rightly deserve.

The writer is president of SOS Health Care board of directors.

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