On Dec. 18, 2007, the United Nations General Assembly adopted a resolution declaring April 2 World Autism Day. You may ask yourself, what merits this particular disability its very own day? Simply put, autism or (ASD) will be diagnosed in 1 out of every 68 children in the United States (1 in 42 boys and 1 in 189 girls).
There are currently more than 3 million people living in this country who fall somewhere on the autism spectrum, according to a 2014 study in JAMA Pediatrics. 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. Sadly enough, regardless of the advancements made in recent years, there is no cure for ASD, only treatment.
A very concise explanation of people with ASD was written by the American Psychiatric Association and it states that 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. As those of us in the field say, If you’ve met one person with autism, you’ve met one person with autism. Some individuals may exhibit these symptoms and characteristics of autism intensely while other will show subtle, less obvious signs, but nonetheless, they all are affected by the disorder to some degree.
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The good news is that early diagnosis and intervention can significantly and positively affect the child diagnosed with autism. Early diagnosis is critical. Although we have gotten better at diagnosing at a younger age, we still lag behind in seeing the signs that could lead to an earlier diagnosis.
The findings, which appear in the NCHS Data Brief state that more than half of school-aged kids were age 5 or older when they were first diagnosed with autism spectrum disorder. Less than 20 perent were diagnosed by age 2. So, as you can see, many remain undiagnosed until much later. The American Academy of Pediatrics recommends that pediatricians screen children for autism at 18 months of age.
Since there are no definitive medical tests, the method of diagnosis is usually observation by a physician, psychologist, speech pathologist, occupational therapist and perhaps a few other experts who rely primarily on behavioral evaluations. Occasionally, genetics testing is also performed to rule out other diseases and syndromes.
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; however, it is one of the best treatments to stimulate the brain and to increase language and social skills. We like to think of this treatment as a way to “rewire” the brain.
It is a very intensive behavioral intervention for children on the autism spectrum and can run a family tens of thousands of dollars per year. There are funding sources available in South Carolina to assist with these costs. With lots of hard work, ABA Therapy, speech, occupational therapy, physical therapy 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. Caring for a family member with autism could cost up to $2.4 million over their lifetime, according to a study published in a 2014 issue of JAMA Pediatrics. 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.
There is currently a nationwide as well as a state initiative to train, educate and find jobs for people with autism. In June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed; meaning only 16.8 percent of the population with disabilities was employed. (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed.)
It is clear that in most cases individuals with ASD cannot do this alone, but with the assistance of a job coach, the employee can find great success that probably couldn’t be achieved without this assistance and support. More job coaches are needed in order to increase the likelihood that people with ASD and other disabilities can secure and keep positions of employment.
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 percent of the research funding of many less prevalent childhood diseases. The total 2012 National Institutes of Health budget was $30.86 billion; of that, autism research received only $169 million - a slim 0.55 percent of the total NIH funding budget.
Autism spectrum disorder is a growing global health crisis and rightfully deserves its own day. We don’t celebrate this day in the usual way one would celebrate, but use it to raise autism awareness, fundraise, educate the public and faithfully advocate for those who cannot often do so for themselves. We are their voice in union with them. Around the world, people who advocate, teach, mentor, and live with people who have autism will use this day to continue to work to help make the lives of people the very best that they can be.
The writer is president of the board of SOS Healthcare Inc.