(Originally published on April 2, 2008)

In February 2007, most major news outlets led with headlines that looked like one of the following:

• 1 in 150 individuals is diagnosed with autism
• Autism affects about 1 in 150 children in the United States
• As many as 1 in 150 people have autism
• 1 in 150 children in U.S. has autism
• Autism is a neurological disorder that strikes 1 in every 150 children
• Study puts rate of autism at 1 in 150 U.S. Children

That information became gospel on that day, despite the fact that the 1 in 150 is convoluted at best, flat out wrong at worst, and that the very study it comes from states the following:

“Because participating sites were selected through a competitive federal award process and not specifically to be representative of the entire U.S. population, ADDM Network results cannot be used as a basis for estimating the national prevalence of Autism Spectrum Disorders {ASD}.” (CDC). It is very important to note that the headlines state that 1 in 150 kids has autism, but the study actually used kids diagnosed under the ever-expanding “net” of Autism Spectrum Disorders. I liken the “autism spectrum” with saying that someone who is near-sighted is on the “blindness spectrum”.

ABC News was one news agency I found that reported the rest of the story (February 2007):

“Study Puts Rate of Autism at 1 in 150 U.S. children.”

But does it?

According to the CDC (Centers for Disease Control and Prevention), it does not.

But before we blame the media, we might take a look at the source of the confusion — the news conference the CDC held to announce the study Thursday.

Its experts came awfully close to having it both ways, at once repeatedly cautioning against using the 1 in 150 number as a national estimate, and then suggesting that, well, you could sort of tentatively do just that — to the point of calculating that 1 in 150 would extrapolate to 560,000 American children with autism (specifically, with autism spectrum disorders, or ASDs).

The study from the CDC that brought out this 1 in 150 number used data from 14 states and only looked at 8 year old children … actually, they only looked at the files of 8 year old children diagnosed with an ASD. The study discusses in great detail the training their reviewers went through to look at these files, but what they didn’t talk about is that the criteria used to diagnose these children in the first place was likely very diverse between locations, and likely flawed. The study did not look at actual children and put them through a consistent screening process to determine actual diagnosis, they only reviewed files, some from clinics, some from schools.

Some children diagnosed with an ASD are examined by a multi-disciplinary team of professionals, others receive the label from their school or a speech therapist (“semi-professionals” as I refer to them). Some get the label because a parent is told they won’t have access to services (such as speech therapy) at school without the ASD label (access to services also means access to funding for the school or other venue providing these services).

Today, it seems that every other public service announcement is spewing forth the 1 in 150 number as fact. Most of these are courtesy of a group called Autism Speaks. Let me be perfectly clear here, autism is real and offers daily challenges for families with a child who has autism. I am in no way attempting to minimize these families, but I am trying to make everyone very aware that autism and the ever expanding net of “autism spectrum disorders” has become the diagnosis du jour, and some dangerous precedents are being set.

• Children who don’t quite land in the middle of the developmental curve are being labeled “autistic”, by people who have no actual credentials to make such a diagnosis.
• Children who actually are autistic are being cheated out of resources that are being used on this flood of kids supposedly on “the spectrum”.
• By broadening the spectrum, there are more and more “clinics” claiming to cure autism. True autism cannot be cured, but if you bring in a bunch of kids with speech/language problems, put them on the spectrum, give them speech therapy, then you can claim to cure autism.

In an article entitled “Three Reasons Not to Believe in an Autism Epidemic” the authors conclude that:

“… no sound scientific evidence indicates that the increasing number of diagnosed cases of autism arises from anything other than purposely broadened diagnostic criteria … “ (Morton Ann Gernsbacher, Michelle Dawson, H. Hill Goldsmith (2005) Current Directions in Psychological Science 14 (2) , 55–58.)

So, what is Autism? For the DSM-IV criteria, click HERE. It is important to note the use of the phrase “substantial delay”. Other sources describe it as “severe or extreme” delay. A good resource comes from the National Institutes of Mental Health.

There is one component of the DSM-IV criteria for autism I want to highlight:

“qualitative impairments in communication as manifested by at least one of the following: (a) delay in, or total lack of, the development of spoken language (NOT accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).

This is where the skewed statistics and over-diagnosis of autism becomes personal for me, and why the incorrect reporting of the 1 in 150 number drives me to aggravation and sometimes even to tears.

Most of you know that I have a 6-year old daughter (Hannah). What you don’t know is that my precious girl has a severe language disorder. This diagnosis is also found in the DSM-IV, but unfortunately, too many semi-professionals are taking children with communication disorders and tossing them into the autism spectrum “net”. Hannah’s official diagnosis is “severe mixed expressive-receptive language disorder”. The simple definition is “impairment in ability to both understand and express language”. The specifics in the DSM-IV can be found HERE.

Because there is a communication/language component within the criteria for autism, and the growing number of casual lists of what it means to be autistic, I have been battling semi-professionals and total strangers about my daughter since she was 18 months old. I have had people in grocery stores say to me “Your daughter doesn’t talk very well does she? She’s autistic right?” In one evaluation just after her second birthday, I picked Hannah up in the middle of the process and ran from the building being followed by semi-professionals screaming at me that I was in denial and that my daughter had autism and needed intense therapy to have any hope at all. (These were a speech therapist and a college student and since they hadn’t finished their evaluation, they had no business coming to a diagnosis of autism. Of course they wanted me to sign up for their services and pay them for the hope only they could offer.)

I cannot imagine under any circumstances that I would presume to know or diagnose someone else’s child in the middle of a grocery store or anywhere else (churches have been especially difficult in our experience … this is very sad). Second, it always amazes me when people who think they are telling me something I don’t know … that my child doesn’t talk so good, as if I hadn’t noticed it on my own and needed the guidance of total strangers!

Fortunately for me (and for Hannah), I was not about to let just anybody stick a label on my child, so I went looking for the experts in communication disorders. I found those experts at Vanderbilt University in Nashville, Tennessee, Dr. Stephen and Mary Camarata. Initially, they started working with me long distance to teach me how to help Hannah communicate and to learn language. By the time Hannah was almost 3, we all agreed that a good assessment could be done and we traveled to Nashville.

When we met the Camaratas, I immediately felt the weight of the world fall off my shoulders, and I was confident that whatever diagnosis we received – even if it were autism – would be accurate and based on thorough and strict assessment procedures, not on sloppy or loose procedures based on bringing in “clients” for the basis of bringing in money. Part of the assessment included standardized tests for autism, which Dr. Camarata summed up for me as “how could anyone with any knowledge of what autism really is even think this sweet, social, engaged little girl is autistic?”.

A severe expressive-receptive language disorder has challenges of its own (especially the receptive part), without throwing in the aggravation of total strangers repeatedly pointing out to me that Hannah is autistic! With the Camaratas help, I have become Hannah’s speech and language teacher (we had planned on homeschooling before Hannah was ever born, but that certainly turned out to be the best decision for her in relation to the language disorder as well). It has not always been easy, and I have had plenty of days driven to tears (mine) and exhaustion (mine). I have to remind myself often that I would be just like Hannah if I were put into an environment where I did not understand the language – the words or the grammatical structure of that language.

Initially it took months to build her spoken vocabulary (nouns first) and a lot of repetition for her to make those words her own. It took her only a few seconds to pick up on sign language though, so initially she communicated with signs, and I communicated with signs and the spoken word. Most of the signs have fallen away, but she still has a few that we like to use and she always loves to learn new signs, so that remains a component of our language work.

The rewards certainly outweigh the frustrations though … such as finally hearing my sweet girl tell me she loves me. We still have a long way to go, but like Dr. Camarata tells me, as long as we continue to make forward progress, it is good. If you compare Hannah to other kids her age, you see the delay. But if you compare her to herself … one month ago, 6 months ago, 1 year ago, you see huge gains and amazing progress. The path we are on and the work we are doing should bring her in line with her peers by late elementary in relation to language … in other areas, Hannah already passes her peers.

So, why did I decide to tell you all of this on Wednesday, April 2nd? Because today has been declared World Autism Awareness Day and I know that most of you are going to hear news stories some time today that will tell you about the 1 in 150. You may even hear stories of children being “declassified” as autistic after therapy, and I wanted you to have a bigger understanding of how that information is being spun and what these statistics actually mean.

I also wanted people to be aware of what true autism is and the challenges faced by those families. I am all for awareness, but not to the point where every kid who falls slightly off the bubble of the development curve should be dragged into a net where they don’t belong.

Dr. Camarata wrote an excellent column about the differences between being autistic and having a language disorder. I’m not including it in this post (which is already getting very long), but you may read it HERE … it is worth the time to read and gain a better understanding.

For those of you who have read this far, I thank you. This is both an emotional, highly personal subject for me and one that also begs the academic in me to make sure that statistics are not used incorrectly.

Recently we were shopping, and as we went around someone in an aisle, Hannah looked up at them and said “hello! excuse me please.” The woman appeared stunned and said to me “what a polite, well-spoken little girl!” I said thank-you and thought to myself how wonderful to hear someone refer to Hannah as “well-spoken”. We’ve come a long way. We still have a long way to go, but I wouldn’t trade this journey with my daughter for any other road we might have traveled. Hannah’s full name means “precious gift of God”, and she certainly is.

OneMom

(as of June 23, 2008, I have opened a new blog talking only about Language Disorders. Please visit “A Time to Talk“)