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December 19, 2013

Autism, the new over diagnosis?

**I decided to pull this one out of the archives and update it. Enjoy!**

A few years ago, I had a string of synchronistic comments that all focused on the same concept; Autism is not as prevalent as it is publicized to be. First, I was talking to a former special educator and I mentioned that I had three kids on the spectrum. He kind of did one of those uncomfortable grunt-humpf's and said, "well, you know, everybody has autism now. I hear about how so many kids are being diagnosed with it. Twenty years ago it was dyslexia, now its autism."  

I can hear your gasp at the gall of such a man to say this to a mother, but I get comments like this all the time.

The next comment came when I was talking to a grandmother whose grand-daughter had just been diagnosed. She, I imagine was still in a bit of denial and actually parroted the same quote, "it's just like dyslexia was when my kids were coming up."

I wondered where these people were getting the idea that Autism is the new dyslexia.

Autism is NOT like dyslexia, but I guess I can see how people on the "outside" might get that impression. Dyslexia, for many years was a hard to obtain diagnosis characterized by some of the same challenges some parents with a child on the spectrum experience; scarcity of treatment options, not being taken seriously by doctors and/or educators and lengthy struggles to convince people of your child's intelligence despite delays. On the other hand dyslexia did become overused in the media as a plot for sitcoms and after school specials.......

"Stay tuned for a very special episode of (enter your favorite 80's family sitcom here) where (character) finds out he/she is dyslexic"

Back to my sync stream....following these two "Autism is the new dyslexia" comments, a friend shared with me how Autism has always been around and that people were just paying more attention to it now.

In noticing an underlying theme in these three interactions, I asked myself the following;

Is it possible for Autism to become an over diagnosed disability? Being a spectrum, Autism can range from the very mild, PDD/NOS (Pervasive Developmental Disability/Not Otherwise Specified, to severe, low functioning (not my favorite term, but for lack of a better descriptor) Autism. If Autism is over-diagnosed, can it then become easy to ignore, because everybody has Autism? 

Except for blacks and hispanics who are under-diagnosed

Recently, a few celebrities have come out and shared their diagnosis with the public.
New and notable mentions:
Wikipedia List of people with autism spectrum disorders
A press release for the documentary Autistic-Like:  Graham's Story, suggest that "thousands of children diagnosed each year with autism actually have milder disorders, but to get treatment, parents are often pushed to accept the inaccurate label of autism." 

The focus of the film is the struggle of parents Erik and Jennie Linthorst to get help for their 4 year old with sensory processing disorder.  The documentary features well known treatment pioneer, Dr. Stanley Greenspan, creator of Floortime, "a specific technique to both follow the child’s natural emotional interests (lead) and at the same time challenge the child towards greater and greater mastery of the social, emotional and intellectual capacities.  With young children these playful interactions may occur on the “floor”, but go on to include conversations and interactions in other places." (from website)

From the parents perspective, finding out their son had sensory processing disorder and not autism was liberating, now they can better treat him with more specific interventions.

Marla Cone of Scientific American writes about the work of Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis (January 9, 2009). 
Hertz-Picciotto believes it is environmental triggers not better diagnosis that is responsible for the increase in autism cases "The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24 percent increase in children reported to be autistic by the age {this part omitted from original article}"

Cone also states, that "a shift in doctors diagnosing milder cases explains another 56 percent increase. And changes in state reporting of the disorder could account for around a 120 percent increase." Hertz-Picciotto according to the articles says, those factors "don't get us close" to the 600 to 700 percent increase in diagnosed cases.

In a report (March 20, 2013 - better late than never!) regarding a parent survey conducted by the CDC, the National Survey of Children's Health found
between 2007 and 2011–2012, the prevalence estimate for parent-reported ASD diagnoses among U.S. children aged 6–17 increased significantly, from 1.16% to 2.00%. Increases were observed in all age groups, and among boys aged 6–17.  
The increase,in their opinion was the result of diagnoses of children with previously unrecognized ASD.

The rates of diagnosis, mis-diagnosis and over diagnosis is as much a mystery as the meaning of the metaphorical puzzle piece which represents this disability.
What need not be ignored is the actual delays in functioning, the social struggle, and the need for compassion.  Autism, dyslexia, sensory processing disorder, these are all just labels.  Whether its to get services or to finally place a name with a face(so to speak), labels do not define our kids and they certainly don't change the reality of the challenges families and individuals face. Ultimately my hope for my children and all on the spectrum is to have meaningful and fulfilling lives. Period.

**Update - Since originally writing this post, no one has approached me with the comparison again. Not sure why, maybe they read the blog post and decided to steer clear of the subject. I think not long after the 1 in 110 numbers came out and people started taking Autism diagnosis more seriously.**

What's your take on Autism being over-diagnosed? Are clinicians better equipped to spot more children or are we dealing with an epidemic? Also, if Autism is being better diagnosed, then why are African Americans and Hispanic's being under-diagnosedAll viewpoints welcome.
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