Posted by With Autism Day in Montgomery scheduled for Tuesday and April being Autism Awareness Month I thought I would share an editorial written by Dr. Caroline Gomez and I. Dr. Gomez is the State Coordinator for Autism Services.
Does anyone ever remember seeing a child with autism when they were growing up? We do not. Maybe that is because in the1970s and 80s only 3 to 4 children in every 10,000 had autism. Today, 1 in every 110 children has autism. With an autism diagnosis, family’s lives take a different course, a course that few can appreciate, as different realities force their way in.
These children are perplexing. Their faces don’t reveal their desperate needs and this creates an unrealistic expectation from many, including the person in a grocery store passing a child with autism sitting in a cart while his mother tries desperately to ignore the obvious display of contempt. The challenging behavior witnessed is often thought to be willful misbehavior when, in fact, the child is in distress and simply does not know how to respond appropriately to his overwhelming and confusing world.
Although autism is typically thought of as a childhood disorder, societal and economic costs extend well into adulthood. A majority of adults with autism struggle with ongoing and mostly unmet needs for employment, housing, services, and supports. Today, 74% of working-aged adults with autism are unemployed, but would like to work and 84% still live with their families. Their parents agonize over who will care for their adult children when they are no longer able. We can offer them little comfort.
In the midst of this uncertain future, the Alabama Autism Task Force was formed in 2007 and charged with recommending ways to improve the treatment of autism in Alabama. The 2009 Task Force Report offered recommendations for (a) services from screening and diagnosis through adulthood, and (b) an Alabama Autism Interagency Coordinating Council, which is now leading efforts in implementing the Task Force recommendations (see www.autism.alabama.gov).
However, these families continue to wait for services. Unfortunately, the need continues to far exceed the available resources, leaving a generation of individuals with autism and their families in programmatic, financial, and personal crisis. It is imperative that increased resources be devoted to this urgent and substantial need. The economic cost of autism is currently estimated at up to $90 billion annually. Absent the concerted effort on behalf of all (i.e., parents, professionals, employers, and society at large), the societal and economic costs can only be expected to increase substantially.
As they wait and cope, these parents continue to wake every morning to the challenge of the new day accompanied by the faces of their beautiful children. Some days end with laughter and a light heart and others with tears, anguish and a burdened heart. These parents epitomize courage, perseverance, and selflessness as they continue their remarkably challenging journeys. They are inspiring to many of us, but would trade the gesture and everything else that they have just to be able complain about things like having to carpool to baseball or ballet practice again.
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i think the judgmental faces of others is the most hurtful thing that parents face on a daily basis, that and the fact that a babysitter who can cope is nearly impossible to find. the parents need respite care as much as the parents of more obviously disabled children. too bad they have been invisible in Alabama for so long.
Thank you for the nice awareness post. You captured the feelings of many parents well. We need to address many of the concerns and needs of our neighbors next door. The Churches, Service Organizations & Corporations can do more. Here is a small list of ideas… http://bit.ly/alzUXh
Re: “in the1970s and 80s only 3 to 4 children in every 10,000 had autism. Today, 1 in every 110 children has autism.”
Representative Ward, have any studies been made to determine why there are more children with autism now than there were in the past? Could the cause be something in the environment now that wasn’t present earlier, or something in the lifestyle of one or more parents that brought about this increase?
My wife is a psychologist with a focus on autism and says there are several reasons for the dramatic rise in numbers:
1) An expanded definition: They have broadened the diagnostic criteria for autism in recent years. This means autism captures a lot more people than it used to.
2) Better means of detection: Doctors today have a much better understanding of autism and are better at diagnosing it.
3) Earlier detection: Doctors are also picking up autism earlier. There are now two diagnostic cohorts. Average age of diagnosis used to be 4-5 years old, but many children are now being diagnosed at 2-3 years old. These earlier detections help account for the bolus increase.
4) Autism is a fad disorder. As a result, it is over-diagnosed right now (I don’t mean this in negative sense, it is just the reality. The same thing happened with pediatric bipolar in the 90’s).
Anyway, it seems like everywhere we go people are asking my wife why autism has shot up, so I thought I would share the answer she always gives.
Don, read over this study by England’s NHS and ponder.
Don this is an issue I have often wondered about myself. There are many different theories but I imagine the answer is a combination of factors including genetic, better diagnosing, MAYBE environmental but I really just don’t know.
there is still no permament solution for autism. we just have to take good care of the kids who are suffering autism.*-;
there has been no permanent cure for autism yet but i think stem cells could also help;~-
With all due respect to your wife, northalabamapol the points you listed have been thoroughly researched & Discounted. All allow the masses to sleep at night. There is a significant unexplained rise in Autism ADHD Asthma allergies & Autoimmune disorders. Bottom line only explanation is the Environment. 1 in 6 women bring a toxic load to pregnancy & Now 1 in 6 children have developmental delays. No more excuses. We must be aware & Do something. TannersDad Tim