April is half over and I have been caught slacking off!
You see, April is Autism Awareness Month. For the past few weeks I have been wanting to write a new post for this blog that features Autism and some of its unique challenges to families and individuals. I am late, but it is never too late to take a look at this phenomenon that is so rapidly affecting the lives of an ever-increasing population.
When my son was diagnosed as being on the Autism Spectrum in 2000 he was already 10 years old and in fourth grade. At the time we were told that Autism affects about one in every 1,000 children. It was just becoming a rather well-researched area of behavior. Insurance companies were arguing over whether autistic people should be covered by health insurance or psychological/behavioral insurance. As a result of these bickering many persons were simply denied coverage completely.
My how time changes things!
Now the law states that autism must be covered by insurance, generally the behavioral/psychological portion of one's policy. The number of diagnoses has also increased at a shocking rate, making autism the world's fastest growing developmental disability. Today 1 in every 120 children are diagnosed with some form of autism. Among boys the number is even greater, to the tune of 1 in 90. Fortunately, children are receiving their diagnosis at a much earlier rate, usually during the pre-school years. This enables a family to seek early intervention resulting in a greater capacity to cope with the symptoms.
Living with autism is never easy. Early intervention, however, can have a tremendous positive effect so the first few years of school are not wasted, as they essentially were for my son. I earnestly pray that no family needs to go thought the struggles our family experienced during the decade of the 1990's. I often refer to them as the "Lost Years" because we spent so much time banging our heads against the wall, fighting with the local school system and the local principal in particular, and being frustrated with behaviors that were so bizarre and unexplainable that I'm sure most people did not believe us when we told our story. After all, autism can be a master of disguise. Many who have it appear more-or-less "normal" at first glance. Unlike many disable children the autistic child frequently can walk, run, and talk with some degree of fluency. It's not until one looks closely and observes for some time that the oddities begin to appear. Things like...
· Repetitive behavior
· Lack of eye contact
· The appearance that they are not listening
· Insensitivity to pain; or the excessive display of an over-reaction to simple stimulus
· The flapping arms or rocking motion
· The lack of age-appropriate social behavior
· The somewhat unusual patterns of speech
These all can be symptoms of autism and they can easily be overlooked upon a first contact.
The symbol that has come to represent Autism Awareness Month is the multi-colored puzzle pieces in the shape of a ribbon or bow (see above). The colors represent the diversity of sub-groups under the umbrella of the Autism Spectrum Disorder (ASD). It also suggests that each person is unique and can not easily fit into a mold or generalized approach. The puzzle pieces remind us that even with all the research of the vast knowledge available on the subject today, autism continues to be a puzzle that defies understanding.
Now more than ever we need to educate ourselves and prepare for the future. My son is not alone. All those born before 2001 (give or take) who are currently diagnosed autistic are fast approaching the age of 21, or have already passed it. Insurance companies are woefully unprepared to provide for the needs of these people. So are the State and Federal Agencies who are responsible for coordinating and providing the care needed. Out of necessity most school districts have caught the vision and are taking positive steps. This is not to say all districts have. But they generally do far more than they did just 10 years ago. State agencies, such as the Pennsylvania Bureau of Autism (BAS) and the MH/MR/EI offices do a better than average job of meeting the needs of young people under the age of 21. But the age of 21 is significant because this is when a person on the ASD moves or transitions out of the more sheltered confines of the juvenile system and enters the murky waters of adulthood. Here in this largely unexplored wilderness they find greater frustration. The reason is due to a horrific lack of readiness for these new masses who are very suddenly finding themselves with limited training at best, no real job skills, and an embarrassing display of prejudice against them, as if the label "disabilities" was equated with worthlessness. Nothing could be further from the truth, but I will hold off on that thought for just a bit longer. I promise, however, that I am focused and determined to deal with this topic in the near future.
There is so much more I could write. Keep checking back throughout the month of April for the latest information.
I do want to pass on some great opportunity for you edification.
1. The Autism Society of America has a great web site that can make it easier to learn symptoms and suggested treatment plans. Their web address is Autism-Society. Org.
2. The PBS NewsHour with Jim Leher is doing a special segment nightly this week. It will deal with the issue of autism. Former Anchorman Robert McNeal will discuss various topics of interest. The NewsHour can be seen on your local PBSW Station from 6 - 7 PM (EDT). Scheduled topics include:
· Autism Prevalence
· Autisms Causes
· Autism Treatment
· Adults with Autism
· Autism policy.
So don't be caught slacking off. Learn about Autism and how it affects the families that live in its shadow.
gdgehr is an advocate for Autism Awareness.
He works as a Job Deveopment Specialist for people with disabilities.
Your thoughts and comments are welcome. Either post them below or email me at gdgehr@ptd.net.
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