Dr. Shapiro completed his undergraduate education at UC San Diego, earning a B.S. in Biochemistry and Cell Biology, and a B.A. in Political Science. He furthered his education at UCLA where he earned a Masters Degree in Public…
Is It Time to Change the Diagnosis of Autism?
Posted in Autism / Autism... by Dr. Jeremy F. Shapiro on Apr 11, 2012
In the heels of new government data last week, indicating 1 in 88 children have autism, there may be a potential change in how we diagnose autism looming in the not too distant future. And although I do understand the need to better clarify autism and those who are on the spectrum, I certainly hear the concerns being raised by those who want to leave the current system in place.

You see, when I first finished residency in the early part of last decade, I thought I had a great understanding of the diagnosis of autism. But when I began my career as a general pediatrician, I soon began to realize that the diagnosis of autism was so very vast, including mild to severe symptoms. And while there was little confusion when it came to diagnosing autistic children with more severe symptoms, things were not so easy with children who had mild symptoms. I initially found parents more reluctant in giving their child a diagnosis of autism because of the potential social taboo attached to having the diagnosis. Often, I would refer to my developmental pediatric colleagues to help clarify the diagnosis and identify appropriate developmental services for their child...often provided by the state.

And so over the past decade, I’ve noticed a change in mentality where parents have become more open to the diagnosis, as they realized that early intervention (even with children who had mild symptoms,) was so very helpful to the overall developmental growth of their children. And getting the official diagnosis would allow for services to be provided by the state.

And so this brings us to current day where making the diagnosis of autism has become so stretched that the American Psychiatric Association has proposed changes in how we diagnose autism.

Bearing in mind there is no definitive test for autism, some of these proposed changes include:
- A new “autism spectrum disorder” category. It would be used to describe symptoms that appear before age 3 and would include those who currently are considered to be severe cases, as well as 2 high-functioning variations. It would require 3 types of communication problems (including minimal to no conversation and poor social skills,) and at least 2 repetitive behaviors or unusual interests such as arm/hand-flapping, tiptoe-walking, and obsession with quirky topics.

- Asperger’s disorder and pervasive developmental disorder not otherwise specified (PDD-NOS, a diagnosis often given to children with mild symptoms) would be no longer, but their symptoms would possibly fit under the autism spectrum disorder category.

- A new category labeled as “social communication disorder” which would include children who have difficulty relating to others and have problems reading facial expressions and body language.
So with these changes, some experts are concerned as many as 40% of those currently diagnosed with autism will no longer fit the criteria, which would mean no services provided by the state.

And while I agree there needs to be better clarification of how we define autism, I am as a huge a proponent of early intervention even in the most mild of cases. Because the mind set should always be to maximize the potential of our children and early intervention clearly does that. Ultimately, we must tread very carefully here, as we must consider the full ramifications in changing how we diagnose autism.

Any thoughts?

- Dr. Jeremy


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Thank you Dr. J for this blog. We need to understand the needs of each child and each child needs to have any and all services necessary to be educated and capable to their maximum potential. Parents need to have information and schools need to held accountable to the Federal Laws. How Autism is defined is changing as autism is changing, for whatever reason. Professionals who have been in the early intervention field for decades are seeing many more children qualified, not just with autism, but other types of developmental disorders, than they saw in previous years. I think that my child is still qualified by the new DSM-V, and I think it is going to allow for a more clear potential for recognizing what services are necessary and suitable for each individual child. Parents need to have specific data and diagnosis and the schools need to provide appropriate education.
By Olismom  May 13, 2012
I think if it is greatly increasing and we change how we diagnose so that less people are considered autistic eventually mild autism will become the norm.
By mamoth  Apr 14, 2012
I find your comment about PDD-NOS being used for mild insulting to those that have children that are not "mild" in the spectrum but are only given that diagnoses by a Dr. My child was denied services over and over because her Dr and FNP found her "quirks" cute!!! She is well into the spectrum and diagnosed by a good child psychiatrist who is well respected in our state. Just because parents can meet their ASD child's needs does not mean that support when they hit school (pre-school) and are dealing with being away from their parents.
By candsmom  Apr 14, 2012
This is getting out of hand I remember a decade ago the number was far different, it used to be like 1 in 200 kids had autism but now it's 1 in 88?

Either more and more kids are being misdiagnosed with autism or autism is getting more and more common which could spell doom for future generations. :(
By dsboydjl  Apr 13, 2012
My niece (not knowing it)married a man with autism disorder and then they had 3 boys who all have it. She does not live close by so I can not observe them. Have they determined if this disorder is inherited, it seems to be in these cases.
By bluesapphire  Apr 12, 2012
Any changes to diagnosis criteria should be toward greater understanding. Yes to early intervention. Services provided by the State shouldn't be an "all-or-nothing" prospect. If Autism, or other difficulties associated with it, lies on a spectrum then there should be a spectrum of funding to deal with it.

Even without the funding, good diagnoses can lead to greater understanding particularly among doctors who need to have good patient-doctor communication going on.
By Fern RL  Apr 12, 2012
I consider myself to be undiagnosed Autistic. To me, intelligence is a spectrum, not Autism. Intelligence helps cope with Autism, making it seem less severe. I go with the theory that a person can be hypo-, normal, or hyper- sensing in the brain's interpretation of various sensory input. I believe it is hereditary. Are genetic studies being done?

I suspect that the increase of diagnoses is due to greater understanding of Autism, not false-positive assessments.

I think I was not diagnosed with Autism because I was born and raised in Rural Utah 63 years ago. My mom helped me a lot, though.
By Fern RL  Apr 12, 2012
Autism services: I suspect that a lot of government bureaucrats (federal, state and local) are scratching their heads thinking, "Wait a minute, we can't afford this without raising taxes!" And the for-profit insurance companies are probably complaining in their board rooms "this Autism crap is eating into our profits, how we can we put a lid on it?" And the DSM gods are doing the dirty work for both entities that are paying the bill. The results: parents either paying out of pocket for services if remotely possible, and probably an increase in teenage suicide by high-functioning autistics. The latter of which I came close to doing. However, we will manage to save a buck here and there, won't we. p.s. I was dx'd at 6 with Autism and still have it, the Spectrum version
By alohamsguy  Apr 12, 2012
I am an early intervention speech therapist and I would hate to see children losing services that they need and will benefit them. I think there does need to be a more accurate method to diagnose autism, but hopefully it will be such that children that need services are able to receive them.
By StephH77  Apr 11, 2012
1 in 88 children? Now isn't that an eye opener that we are either over diagnoising or there is something in most peoples day to day lives causing this in our children.
By jake4  Apr 11, 2012
It can be a struggle to get assistant for childhood mental health needs, so I understand the reluctance to change the diagnosis rules. (State aid tends to lag scientific advances.) But I believe that accurate assessment of a child's needs is very important.

It would be nice if the state aid programs specifically allowed a grace period (several years??) so that aid programs can be PROPERLY modified to adapt to new understandings.
By ThePepperMan  Apr 11, 2012
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