This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.
Is the rise in the rate of autism primarily a result of successful awareness campaigns?
That was my first thought when I read the Centers for Disease Control’s new prevalence report released last week. With 1 in 88 children now being diagnosed on the autism spectrum, the urgency to find out why there is a 78% increase in the rise of autism diagnoses from 2002 and 23% since 2006, has never been stronger.
But with increased urgency we must avoid haphazard jumps to conclusion. This is a 55% increase in diagnoses within only 4 years (from 2002-2006), which to my skeptical eye points to better awareness rather than an acute environmental change. However, it is only through a careful sifting of scientific evidence that we can truly surmise the cause(s) of the dramatic increase – a process which takes time.
As a mother of a child with autism the wait has been and continues to be frustrating. But as a trained researcher I know that correlation is not causation and, while many factors have been examined as causes of the increase in incidence, none have offered definitive proof. We must continue to push for more research – that has not changed and will not change until we find the cause(s).
One clue to the increase in autism diagnoses is the DSM-III-R, which was introduced in 1987. It dramatically broadened the category of autism to include individuals who were not consistently unresponsive to others while still being socially impaired. In California alone since 1987 when the new DSM-III-R criteria were published, there was a 634% increase in the rate of autism.
Clue two is from the journal Pediatrics, which noted a corresponding decrease in the number of mental retardation diagnoses as the rate of autism increased. “The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003. By 2003, only 17 states had a special education prevalence of autism that was within the range of recent epidemiological estimates. During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively.” Note the year 1994. That is when the DSM-IV was introduced and the criteria for autism were changed and awareness of what autism is and isn’t was being further promoted in the medical world.
When my son was diagnosed over 11 years ago hardly anyone in the general population knew exactly what autism was. Doctors weren’t as quick to think ‘autism’ when a child presented with social and developmental differences. I had to explain ad nauseum to friends and family what autism was but after a few years and hundreds of national magazine and television cover stories later, I noticed that people actually knew a lot more about autism than when Jared, my son, was first diagnosed. I also noticed that the term ‘autism’ was being attributed to many children that previously would not have been included under that umbrella. The word “spectrum disorder” became common in the cultural vernacular and folks began to ask me “How severely is your son affected?” The recognition that autism is a spectrum disorder is a good thing because it promotes greater understanding.
To me these cultural changes demonstrate a successful autism awareness campaign. It is no coincidence that much of the increases in diagnoses are from underfunded areas of society. New Jersey, for example with its proximity to New York City and higher education dollars and world-class research universities, has a much higher rate of autism diagnoses than does Alabama, which has historically been a more impoverished area. Now that more funding has been poured into autism research, and rightfully so, impoverished communities are now getting the testing resources that they once did not have. Children who previously received little or no services are now finally getting the help, and here is the key – the diagnosis – that they previously did not receive. Parents and school systems are finally getting the help they need to help those affected reach their full potential.
So, I do not see the increase in diagnoses of autism as ominously as has been reported in the media. While it is true that the increase is something that should cause a greater focus on the cause(s) of autism and should lead to greater funding of research, I also see the increased diagnoses as a sign that we are doing something right. Why? Because you can’t address an issue until you define it. Now that more children are having their challenges with social and developmental struggles defined they can finally get services. So I say “Good work” to all the parents, family members, friends, doctors and researchers out there advocating in the media for increased autism awareness. We’re making progress!
Sources: Pediatrics Vol. 117 No. 4 April 1, 2006, pp. 1028 -1037, (doi: 10.1542/peds.2005-1516).