Is autism over-diagnosed?

The variety of symptoms lumped together in the Autism Spectrum Disorder diagnosis is indicative of the over diagnosing of autism. Using the spectrum to define autism increases the amount of children being diagnosed as autistic and draws much needed attention to the disorder, but it is a double-edged sword, blurring the lines of what autism really is. The autism spectrum gives the same classification of autistic to children who can’t communicate verbally or live independently as it does to children who are able to carry on conversations, participate in the school band and play on a football team. The question isn’t really whether or not autism is over diagnosed, but rather, what are the affects of the over diagnosis.

Reports of autism cases per 1,000 children gre...

Reports of autism cases per 1,000 children grew dramatically in the US from 1996 to 2007. It is unknown how much, if any, growth came from changes in autism’s prevalence. (Photo credit: Wikipedia)

With so many children being diagnosed as autistic, there is an increase in awareness and research regarding the disorder. Autism is becoming a household term. Money is being raised to fund studies regarding the causes of autism as well as to develop more effective treatments. These are good results from the over diagnosing of autism. When only 1 in 150,000 children have the disorder, it doesn’t receive the same priority treatment that it receives when 1 in 150 children have it. Though, added attention isn’t all that helpful if it is misdirected or watered down.

The downside to the over diagnosing is that the focus of research will be on the most common cases. This is great for the children on the most populated section of the spectrum, but what about the children who fall on either side of them? Autistic-like traits on the less severe end of the spectrum may take away focus from the more severe end of the spectrum. With the opening up of diagnostic criteria in the early 1990’s, more children were being termed autistic than ever before. If being tall meant over 6’ in height last week, but this week it means over 5’7”, then all of the people in the 5’7” – 5’11” range who weren’t tall last week, all of a sudden are tall this week. This may be what happened with autism. The diagnostic criteria changed to let in more children, creating the appearance of a boom of autism in the population, leading some to call it an epidemic, but it was just a change in diagnosing.

The over diagnosing of autism may be a sign of a greater problem than autism, that of our need to label and categorize everything that is different. Children who once would have been termed quirky or awkward are now put into a category of having a medical disorder. This creates problems for the child and the family. Everything changes with a diagnosis of autism. Parents need to be educated. Schools need to be able to open up services without a diagnosis. Medical practitioners need to rely less on medication for treatment. Not every child with limited social skills is autistic.

In my personal experience I have found that the concept of autism varies greatly from person to person. The spectrum of autism works well to draw attention to the issue, but how much does it really help? Perhaps, accurate diagnosing of autism would help to draw the attention to the needed areas and we would see more progress in the research of causes and treatments. Going from five cases of autism to twenty-five cases over night does nothing for those original five in terms of better understanding their situation.  Autism is over diagnosed, and I don’t think it is for the better.

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This article was originally written and published by me for Helium.com on October 11, 2010.

Secondhand Autism

Check out my book, Secondhand Autism, in eBook or paperback. The book explains what I mean by “secondhand autism” and recounts the effect of autism on an entire family through sharing personal and family experiences. My youngest brother, Scott, is diagnosed with autistic disorder.

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About paulbrodie

I am a writer and a musician. My education is in psychology with emphasis in industrial/organizational psychology. My work experience has been primarily with electronic document management. Academically and intellectually I am interested in criminology and sociology. I am married to my favorite person in the world and we have one daughter.
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15 Responses to Is autism over-diagnosed?

  1. lily says:

    I totally agree!

    • paulbrodie says:

      Thanks for reading! If you don’t mind sharing, what is your connection with autism? Does it exist in your family, do you work with autistic children, are you interested in it academically? It is interesting to find out how everyone is connected with autism, and with such high rates of diagnosis these days it seems more and more people are going to be associated with it somehow.

      • l says:

        The child therapists at preschool are suspecting that my son may have mild autism. When I heard the word autism associated with my son, I was so much in shock bc I always thought that autistic kids need a lot of assistance with everyday activities, but that’s not the case with my son. So I’ve been reading about the autism spectrum, and everything you mentioned in your article pretty much sums up my opinion of it.

        There’s so much talk nowadays about how there’s so many more autistic children than before, and parents are looking for reasons why, such as being paranoid about immunizations, etc. (another example of the bad effect that over-diagnosing causes). It seems to me that there are more autistic children bc it’s being over-diagnosed.

        I am currently stuck with the burden of having to get my son tested. It’s a burden because there is anxiety, time and money involved. I also think that some of the symptoms that they point out are simply just how some boys can be –they usually are not as disciplined as girls. I find it interesting that there are so many more autistic boys than girls.

        Thank you for your article.

      • paulbrodie says:

        Autism is difficult, but you can manage. It just means doing things differently. The whole “mild” vs. “severe” thing with autism is misleading, I think. It doesn’t really matter anyway, whatever case you are facing is severe enough.

        You bring up an interesting point, that some of what is being classified as symptoms are just normal behaviors. The same thing is very evident with ADD and ADHD diagnoses. The truth is that schools get more money and professionals get validation when more children are diagnosed. It’s unethical and I don’t think this is what is happening in every case, but I think it is certainly part of the problem.

        I wish you all the best with your son. Love is the answer for you. Just love him and find what works best for him. You are the parent, not the school, not the specialists, not other parents. Seek and receive good advice, but you are still your son’s parent.

        I’m glad something in my article connected with you.

      • l says:

        I appreciate your response and advice. Thx.

  2. anonymous says:

    Thank you for writing this article.

    • paulbrodie says:

      You’re welcome! Thank you for reading it. Autism has played a major role in my life, from my brother’s diagnosis to my interest in studying psychology. I take issue with the watered down version of autism that is now reported and in some cases celebrated because I think it takes away from the real discussion needed about classic autism, or autistic disorder. Call me a purist, but kids who can have a two way conversation, and are quirky or socially awkward, don’t fit the definition of autism in my book. I think we have a real problem with over diagnosing everything in our society, autism isn’t alone in it, but it certainly is affected.

  3. Cami says:

    Great article. I took my son to a center that specializes in speech issues, where he was diagnosed with apraxia of speech (and nothing else), then later took him to a center that specialized in autism as his doctor suggested just to rule out the possibility of autism, and I was shocked when he was diagnosed with autism. He doesn’t have any classic signs whatsoever, so it’s been difficult to accept. He just turned 3 years old last month. Thank you so much for bringing light to this issue.

    • paulbrodie says:

      I think autism has become a popular catch all. It is a term that is becoming more and more common and I don’t think it is because more and more children are manifesting the disorder. But I’m not trained in diagnostics, so it is just speculation based on personal observation and study.

      There’s nothing wrong with a diagnosis of autism, or any diagnosis, the issue I find is if the label is applied haphazardly or for ulterior motives (ie drumming up attention to a disorder in order to increase grant money availability). An accurate diagnosis does help focus therapy, and it is very important with psychological issues just like with other more obvious physical, or mechanical, issues, like appendicitis.

      I hope you can find ways to communicate with your son and help him develop his speech. Communication is so vital. Thank you for commenting and sharing your experience. I really appreciate it!

  4. Anonymous says:

    Autism has become obscenely over diagnosed, and I can’t help but think that our schools are becoming overburdened with the exemptions and special accommodations made for these kids that are “on the spectrum”. No one, including me, wants to seem uncharitable or discriminatory, but it seems like every other child today has ADD/ADHD or some form of autism, and frankly I’m tired of pretending the emperor isn’t naked.

    I’m a registered nurse, and I worked with another RN whose girls were both on the proverbial spectrum. Having seen them many times both at school with my own kids and socially, in my (unprofessional) estimation they were at best socially delayed and ill-behaved, and at worst simply not very bright. Actually, it’s really not fair to call them ill-behaved when in reality they were very poorly disciplined and socialized (at one point DCF was called out of concern for them being hungry and dirty at school, so it wasn’t just me who was concerned). I know I’d personally fight to avoid labelling my own children unless it was a last resort out of absolute necessity, but this mother wrapped the diagnosis around those girls like a protective blanket.

    I once asked her if she thought it was wise to accommodate them all the way through high school (they were in elementary school at the time) with special considerations like extra attention, extended time for testing, etc. She enthusiastically explained they’d be offered all of the same options at a state college. Ah. So, that begged the obvious question: How exactly will they function in the real world, in a potentially competitive environment, when no special exceptions are being made for them??

    “Well,” she explained, with equal enthusiasm, “that’s when it becomes really important that they find something they’re *really interested* in so that it holds their attention!”

    Sigh. So… by that argument, the crux of the issue isn’t that these kids have a true disability, it’s that it’s inconvenient for them to pay attention and follow directions if the material doesn’t have every cell in their brain tingling with excitement. No, sorry, that’s not how it works. Sometimes learning and work are tedious, period.

    I’m not an expert by ANY means. But all of my personal observations and all the anecdotal information I’ve seen leads me to seriously question the criteria for diagnosis. This rate of occurrence would, by any other disease model, be considered a pandemic of emergent proportion. Equally concerning is your point that this over-diagnosing diminishes the how the severity of the illness in truly autistic children is regarded, and dilutes the efforts and funding this legitimate disorder deserves.

    • paulbrodie says:

      I think I have thought nearly all of the same things you have. There are clearly children who have something different in their biology, well, we all are different, but some are more different. Like you said, it isn’t about being uncharitable or discriminatory, it’s simply a fact that we can’t all do the same things as everyone else, even if we really want to. For children with severe disorders I’m not a fan of integration in the school. I don’t think it helps anyone, except maybe for helping the “normal” kids learn to appreciate differences. But after all of the public school my brother attended I don’t think integration helped him much at all.

      Your question about what happens to the children who are labeled with a “protective blanket” (I agree with your symbolism on this) is something society needs to face. One of my psych professors said something that your comments reminded me of. He said children are given loud, bright, active cartoons and television shows to watch starting at a very young age. Children are very active and imaginative naturally. After four years of play and hyper-entertainment, they are then sent to elementary school where they are required to sit in a chair and listen to an adult talk and maybe write on the chalkboard. Then we question why so many of them have a hard time conforming to that? For some people the answer seems to be to diagnose the child and put them on medication and give them an IEP. This might bring revenue for the school and some child psychiatrists, but it certainly doesn’t help them down the line.

      If we’d focus less on labels as a defensive cloak and more on preparing children to become responsible, contributing adults, I think we’d be better off. I’ve heard it before and I agree with it, in most cases the only person that needs to know the diagnosis is the clinician, not even the client. Not in every case, I guess, but in some cases where the label becomes a security blanket I think this might be a better approach.

      Every case is unique, though, so it’s hard to define any absolutes. I agree with what you said and appreciate your contribution to this discussion.

      Thank you.

  5. Jess says:

    When I was around 10 years old a child therapist diagnosed me with PDD-NOS (Pervasive developmental disorder) and a very mild form of “Asperger’s Syndrome” now simply just known as “Autism.” Later at 20 years of age I was properly diagnosed with “social anxiety disorder.” I never really had any of the traits of someone with autism except for the fact that I had only one or two close friends and that I’m highly sensitive to sound, taste and emotion. I could always read people’s facial expressions and understand the emotional tones in people’s voices. I think a lot of therapists out there are just in it for the money (and in this crappy economy who isn’t?) and just slap a diagnosis on the first kid that walks through their door.

    • paulbrodie says:

      Misdiagnosis is probably more accurate than what I’ve been saying as over diagnosis. In your case did the diagnosis of PDD-NOS and then Asperger’s help you any? Diagnoses can be useful to create a plan to help the individual. I went to the hospital a week and a half ago with some tremendous pain. They found kidney stones. If they had misdiagnosed me I could have been in trouble. But they diagnosed it correctly and they put me on a good path for treatment (which is actually just drink water and wait, but if my problem was a ruptured spleen and they misdiagnosed it, I could be dead). Proper diagnosis is important.

      Growing up I was always very shy. Painfully shy in some instances. A year or two after high school I saw a doctor and received a label of general anxiety disorder. Did it help me? Yes and no. For a while I think I used the label as an excuse, but in the end it was useful for me to have something to study and learn about and find the right plan for overcoming some of the more difficult aspects of my shyness. In the end, do we all need a diagnosed label or can we just be shy and quirky?

      Thanks for sharing your own experience, Jess.

      • Jess says:

        The diagnosis of PDD-NOS and Asperger’s Syndrome did more harm than good. For years my parents thought I was mentally challenged in some way shape or form and wouldn’t be able to do things at an appropriate age level. I always struggled with math in school and they over exaggerated about it, acting as if though it was the end of the world just because of the diagnosis. I had many unnecessary weekly visits to a therapist who claimed I had Asperger’s Syndrome because I didn’t make constant eye contact and because I did not hang out with fellow classmates outside of school. In some cultures making constant eye contact is considered aggressive or rude. Perhaps I didn’t make frequent eye contact because I was socially anxious and not because of some autistic diagnosis? Perhaps I didn’t hang out with people outside of school because the time I spent with them at school was enough for me? Another thing that the therapist said was that I was “On the high functioning end of the spectrum of Asperger’s Syndrome.” I’m sorry, but I do not believe in the whole “high” and “low” spectrum ordeal when it comes to Asperger’s Syndrome. I think people either have Asperger’s Syndrome or they don’t. I do believe Asperger’s Syndrome is real and I have met individuals who really do have it and they exhibit all the stereotypical traits that are listed in the DSM. However, I don’t believe just because a kid doesn’t make eye contact or isn’t a social butterfly automatically make him or her autistic. I admit when I was a young child I did exhibit traits of an autistic individual but as I got older I grew out of it. Also, I think that a lot of the kids that we see today being diagnosed with Asperger’s Syndrome will eventually grow out of it as well. When I was labeled as Autistic when I was younger I was devastated just like my parents were. I thought I would never be able to do things like a normal person could. Today I can drive, I hold a job and can talk to people just like anybody else (with a little help from an anti-anxiety medication 😉 .) and I’m fine.

        • paulbrodie says:

          According to the criteria they used for you, I had Aspergers as well. I didn’t make much eye contact or spend a whole lot of time with friends out of school, not until I could drive at least. But even at college I stayed to myself mostly, and that was after I had gone through therapy and made a lot of progress in overcoming my social anxiety issues. I expended my social energy going to class and work, when I was done with those things I wanted to do my own thing, alone, usually. Introversion, social anxiety, whatever, but Autism spectrum? Not likely. Of course, it may be part of the secondhand autism I got from my brother.

          I wonder if I were in high school now, with all of the attention the ASD is getting if someone at school or something would suggest I be diagnosed. I don’t think my parents would, they were caught up in my brother’s autistic disorder. I think if the change of a few years and popular trends can affect a diagnosis then it isn’t really a legit diagnosis. I’m not saying that’s what you’ve experienced, or that I know of any cases of it, but its just something I’m speculating about.

          I like what you said about either having ASD or not. I also think that is the case. If it’s something you grow out of, I don’t think it is autism. Social anxiety or personality traits better explain it.

          Thanks again for sharing!

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