Autism and the “1 in 50″…what’s in the number?

Autism in 50

Recently, a  CDC report showed that 1 in 50 children between the ages of 6 and 17 are diagnosed with Autism. So, what should the numbers “1 in 50” mean to you?

This is a little off the usual topic for, but an important one. During my day job with Behavior Management Consultants, we work a tremendous amount with individuals with Autism and those who care for, teach and serve them. The world of Autism is a growing one, for sure, and the needs of these individuals vary as much as the colors of the spectrum used to describe this category of disabilities.

In the last several years, however, it seems there is an unending drive to always update the number of “1 in ____” to bring attention to the incredible pervasiveness of the disability. Not long ago, I prepared a talk about treating Autism and my first slide had “1 in 166” printed boldly across the front. Since then, I have changed that slide 3 times.

What does all this mean? Does it mean the numbers are growing? Does it mean the kids are being diagnosed more? Is it an epidemic? 

Here are the brief answers and comments I have given when parents ask me about “the new number.”

1. Yes, we are seeing and serving an increased number of children with Autism. This might be due to several factors including the number of insurance carriers supporting therapies for children with Autism, the number of general practice doctors and pediatricians comfortable diagnosing children with Autism and the incredible amount of information becoming public about Autism (see comment 5). It should be noted this number is from a survey of parents, so this is a report of parent reports, not a direct report of diagnosed children.

2. Certainly, the amount of public attention given in recent years to Autism has had an effect on the rate of diagnosis. Does that mean there are more kids with Autism now than there were 10 years ago? Probably not. We are just paying attention more and possibly making better diagnoses for some that might have been misdiagnosed as Intellectually Delayed. But, there is also a great possibility of over-diagnosis.

3. This number includes an ever-growing number of diagnoses on the “upper end of the spectrum,” meaning more children with the mildest forms of Autism are being diagnosed (note the rise of knowledge about Asperger’s Disorder). The report noted a large part of this increase is due to changes since 2008 (when information on Autism was spreading quickly) in the prevalence of individuals with “milder ASD” (Autism Spectrum Disorders). Is this where a lot of the misdiagnoses and possible over-diagnoses are? Absolutely.

4. I am concerned that as the number of incidents increases (the second number in the 1 in ___ lowers) it will begin to normalize Autism too much. Imagine if I told you 1 in every 20 kids will have ________. “Sounds pretty normal if 1 in every 20 has it, so it must not be that bad,” you might think. This will not be good for the world of Autism.

5. As this number grows and people learn more about it, the amount of sensational junk about Autism and “therapies dedicated to treating Autism” increases rapidly with very little filter. With every piece of good information out there for families experiencing Autism, there are gobs and gobs of pure nonsense, snake oils, misinformation about mythical/mystical sounding therapies that are ultimately being absorbed and spread by some. Frightening.

Please, if you pay attention to this, really pay attention. Don’t be wooed or scared by anything or anyone without being fully informed.

Any questions? Please feel free to comment here or on the BBA Facebook Page.

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