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Monday, April 30, 2012

1 in 88 Now: Why Are Autism Rates Changing So Quickly?; Will A New Blood Test Help in Diagnosing Autism?; National Autism Leadership Conference; Good News in New Jersey

"Why do I hate terms like disability and disorder? Because those are 'glass-half empty' definitions. I prefer looking at the glass as half-full." Jerry Komar, Founder and Editor of Autism News and Views.

Why Are Rates of Autism Changing So Quickly?

I first asked myself that question last year after reading the study out of South Korea that found 1 in 38 children in South Korea were diagnosed with autism. This was largely attributed to the lack of early detection leaving many children undiagnosed. After having spent my entire career serving this population, I found myself scratching my head. 1 in 38? How can we go from 1 in 110 at the time to 1 in 38? That was a huge leap. After all, it was not too long ago, we were reporting rates of 1 in about 500 children. In fact, in some states, the rates of autism leaped almost 700% from the late 1980's to early 2003.

Then, this March, the Centers for Disease Control (CDC) reported the rate of autism is actually 1 in 88. So I'm left back-tracking to my initial question. Why are rates of autism changing so quickly? It's undeniable that we've become more aware of autism. In addition, screening is much more sophisticated than it was just a decade ago. This enabled us to provide treatment much earlier. All of this also meant we expanded the definition of autism. But does this mean there's an actual increase or the result of how we diagnose autism. A researcher I heard interviewed not too long ago said just because a fisherman casts wider net and catches more fish does not necessarily mean there are more fish. In other words, when the net is cast wider, we will certainly capture more children, but do they all have autism or something else such as behavioral, learning/or social problems?

I'm not a researcher. Most of my experience has been in managing organizations and departments with a smattering of clinical work. So I'm not sophisticated enough to fully understand the methods used by scientists and researchers who come up with these numbers other than the reasons I listed above. There is no doubt that it's much easier for research facilities to receive federal and private dollars when these rates increase.  An increase in eligibility also increases the amount of money flowing into school services especially special education. And an increase in numbers also increases the amount of money flowing into agencies who advocate for individuals with autism.  Directly due to the increase in this funding, we've also made great strides in human dignity. We've been able to expand services, provide for better care and greatly reduce the social unacceptability faced by many individuals with autism. All of these and more are commendable outcomes.

But I'm also concerned about our credibility.  I don't want to see autism elevated as some type of fad or the "in" diagnosis to have. That's not what we're about. Labels don't help anyone. All we have to do is look at what labels did to people with developmental disabilities prior to several decades ago. An individual with autism is exactly that---an individual first and foremost. I don't want to see funding determine how we look at individuals. A dollar sign should not stigmatize anyone without autism. It should be used only to provide provide quality services to those in genuine need of those services and supports. Let's not include people in a diagnosis they do not deserve. We're better than that.  It's looking at the glass as being half full, not half empty.

Blood Test May Aid in Diagnosing Autism

Swedish researchers reported they have developed a new blood test that might aid in diagnosing autism. The researchers used mass spectrometry techniques to profile the proteins in children diagnosed with autism and compared them to profiles of children without autism. They found three differences unique to children with autism. It will be a year before the test becomes commercially available. (Digital Journal)

Mark Your Calendars

The National Autism Leadership Conference: Autism Through The Lifespan will be held from May 31 to June 1, 2012 in Washington, D.C. For more information contact: http://autismdc.com/

Good News In New Jersey

Last month, Gov. Chris Christie of New Jersey pledged to increase funding for autism services. Christie's 2013 budget includes additional funding for critical programs and services for individuals with autism. At a townhall meeting in Somerset, NJ, Christie vowed to find new and innovative ways to help families impacted by autism. Memo to the Governor:  We're going to hold you to this pledge. (New Milford Patch)

4 Your Bookshelf

1001 Great Ideas for Teaching and Raising Children With Autism or Asperger's by Ellen Notbohm and Veronic Zysk