Is Autism a “popular fad diagnosis”?

Recently, Dr. Allen Frances made the comment that Autism was becoming “fashionable” or a “popular fad diagnosis.” Before you read further, I invite you to read his article in full to understand it in context.

Now, many people, even after reading it in context, were outraged. How dare he? Who does he think he is?

Hopefully I can help clarify some of it, at least, in terms of how I interpreted his statements. You may agree with me, you might not. That’s all ok either way. My only goal is to give you a possible new way of interpreting his meaning.

Who is Dr. Allen Frances?

First, I’d like to tell you who the man is because when I posted the link to this article in a few places, people were quite appalled and upset that this “ignorant” man would say such a thing. They questioned his qualifications and suggested he look up the word “spectrum” in the dictionary.

For those that don’t know, Dr. Frances is not just a notable doctor, he was the man in the big chair of the committee that defined the DSM-IV(4).

The DSM is the Diagnostic and Statistical Manual of Mental Disorders… what you and I would call, the guidelines to diagnosing disorders such as Autism.

He was the man responsible for the introduction of Asperger’s Syndrome into the Autism spectrum.

So yes. He’s qualified.

Fad Diagnosis?

Most people read this one statement and immediately assumed that he was saying people were being diagnosed to be cool or popular. Obviously that is not his intention at all as it’s fairly obvious that no one would do that. The general population see disorders such as Autism, Schizophrenia and so forth as negative things… as something they really do not want to be associated with. (most people hear “disorder” and think “crazy”… which is sad, but true)

What he more likely means is that Autism has taken over mainstream media to the point where people discuss Autism around the water cooler now. Every parent wonders about it, every new parent fears it, schools need to be aware of it and anyone within the Autism community promotes it’s awareness.

As a result, people are looking for it. And we all know, when you look for something hard enough, you begin to see it even though it’s not really there.

Milder form? What?

What he is saying, I think, is that Autism was never really supposed to have a “mild form” or “mild presentation,” as he states in the article. That is to say, either you’re very clearly Autistic or you’re not.

The DSM-IV was designed such that you’d fit a certain number of criteria to be diagnosed. That is to say, you must have several impairments and thus, be considered disabled. You read that right, disabled.

However, by including Asperger’s, he allowed for people with “milder” symptoms to qualify for the diagnosis which means that individuals who show some signs yet are not disabled now qualify.

That’s not to say that all individuals with Asperger’s are not disabled… many clearly qualify which is why there is such a classification in the first place.

The problem is that there is no clear boundary set any more which means that a lot of people fit the bill.

Real life example

Emo Care BearTake your average rebellious, down trodden teenager who hates school, has no friends and doesn’t feel like they fit in. Sometimes they’re “emo”, sometimes they’re “goth”….  sometimes they’re just kids.

The question becomes… are they just being miserable or are they Autistic?

I could argue that pretty much every single “emo” person out there qualifies to be diagnosed with Autism or at the very least, Asperger’s.

Are they? No.

At least, certainly not all of them. Most move on from that phase and go on to be normal (semi normal anyway) adults with a regular life.

But as the DSM-IV stands, or at least the way it is interpreted today, every single rebellious, not fitting in teen, could be diagnosed on the spectrum!

See how that could be considered a “fad diagnosis?”

To make matters worse

Doctors are under a great deal of pressure when a parent faces them with a child that isn’t reaching milestones or is having issues… if a parent is convinced that something is wrong, the doctor stands there with a decision to make. Is the child just not smart, is that parent truly just a bad parent… or do they fit on the spectrum enough to squeeze them a diagnosis so that they can get some therapy/help?

This article is from a tabloid newspaper so it needs to be taken with a grain of salt, however, if even a shred of it is true, it’s easy to see how something like this could be perverted into a method to gain funds or help in other areas.

Autism is the popular disorder right now, it is beginning to gain traction with governments and insurance agencies. If money gets channeled to this area, parents and doctors could find a way to squeeze children into a diagnosis that gets them the help they need.

It may get worse before it gets better

In May 2013, the DSM-5 is scheduled to be released with even more major changes. Keep in mind however that it’s still going to be a while before it’s complete so the proposed changes are not final as of yet.

The DSM-IV introduced Asperger’s into the Autism Spectrum and now, the DSM-5 plans to wipe out Asperger’s entirely. Yes, you read that right.

Proposed changes include removing classifications of various disorders and syndromes in preference of using a “severity scale“. I use quotation marks but that’s what I call it.

Essentially, you’ll be given a diagnosis as Level 1, Level 2 or Level 3 which will determine the amount of support you’ll need. Click on the “severity scale” to read more on it from the official site.

So the whole issue with having “mild presentation” will once again become even more… milder? Uhmm… more people will fit the criteria. That sounds right.

And don’t think these changes are limited to the Autism Spectrum. Several types of schizophrenia will also be removed.

You can read the actual DSM-5 site here, if you don’t easily fall asleep while reading science speak.

PS. For anyone that noticed and is wondering… up to and including the DSM-IV, they used roman numerals but have decided to do away with that and use regular numbers starting with the DSM-5. So it’s not just me flip flopping… honest.

Back to the fad diagnosis

So yes, I can understand the outrage that many people felt because it was almost as if he was calling us liars… telling us that we had our children diagnosed just because we thought it was the popular thing to do and not because our children really are Autistic.

But I can assure you, at least from my understanding of it, that it was not his intention at all. Those who clearly fit the criteria and are deserving of a diagnosis have nothing to be offended by.

My son is very clearly autistic, he very clearly fit the criteria… he still does.

Perhaps that is why I did not take offense.

Clarification

To clarify and conclude, Autism is a disorder that is considered a real disability. It impairs many, or even all, aspects of your life.

The question is, are those who have difficulties and struggle qualified to be on the spectrum? Are they truly disabled? Are they truly impaired?

What do you think?

Do you think that people are being diagnosed a little too freely today?

Maybe the boundaries of what is and isn’t Autism should be confined a little more?

Do you think he meant something different than my interpretation? And if so, what did you take from it?

I’d love to hear from you.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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15 Responses to Is Autism a “popular fad diagnosis”?

  1. Sabrina July 22, 2011 at 10:10 pm #

    Reading the comment in context changes all. The problem is, we normally take things out of the context and BOOM! bomb dropped.

    I don’t know what to think. I’m in the , still going to the cycle of denial, cope and acceptance, part of my life involved in autism. My son was just diagnosed last March and is still so young .. ( 25mo).

    What I can say. Is, I wasn’t the concerned parent. He wasn’t reaching the milestones, he has been always behind.. but I wasn’t worried. Maybe I was a little blind. The Doctor in the other side was worried. So he asked me my permission to contact and early intervention team to work with us and so it begins.

    I still not sure where in the scale my kid will fall. I still think he is to young to know, but I know we are in the right moment of his life to react and work. I just hope every single Country in the world had early intervention teams. …

    I’m just babbling. But thanks for writing. Keeps me aware of what I need to know. 🙂

  2. Jen July 22, 2011 at 10:20 pm #

    All comments like his do is make the public believe even more that Autism is the result of bad parenting. That real Autism is just the severe cases, and everything else is just parents looking for an excuse. I get what he is trying to say, but his callous disregard for the “spectrum” part of the diagnosis is unacceptable.

  3. Alicia July 22, 2011 at 11:08 pm #

    This is a subject that give me strong feelings about.
    I am autistic, I received a diagnosis of Asperger when I was 22, for a complete stranger I may look a typical weirdo, but those years were full of despair, I can’t go to many places because of sensory problems, I have problems starting and completing tasks, I have problems with basic things like hygiene, and I don’t get any help because people say that my autism is not real, I couldn’t finish school, I hardly leave my house, yet people say I’m not disabled, that scares me, that my difficulties are neglected, that I am an attention-seeker, doctors are full with prejudice, the diagnosis depends on this doctors, many disabled people don’t receive a diagnosis or get something like bordeline personality (the most useless and offensive diagnosis given to many autistics).
    I and many others don’t need another specialist limiting help and denying our disabilities.
    I hate the term Asperger because it’s now the same as geek and nerd, just eccentric, I’m not any of those, I have a disability, I’m not ashamed of it, but it makes no sense to think that somebody would gladly join a minority excluded group of disabled people without being disabled.
    I believe there was the necessity to compensate for discrimination by posing as not disabled, just different and genius, that happened with the Aspergians and may have caused more prejudice to the disabled that need help and leaves us with comments such as the one gives by this specialist.
    I disagree with him and he makes thing really worse, he should not have said that, but I see from were he is coming from.
    Hope this does not exclude more people, more weird geeks, attention-seekers, manipulative, bordeline non-autistic are worse than more mild real autistics.

  4. Stuart Duncan July 23, 2011 at 8:58 am #

    It is true, he never should have said it and people will take it in many different wrong ways.. which is in part my reason for making this “explanation” post. Not that those who read his article will find my post, but it’s worth a shot.

    Anyway, he never should have said it and certainly not said it in writing. What’s worse is distributing it to the media. Ugh.

    Doctors/scientists/professionals are really careful and meticulous when it comes to the wording in medical/research papers however when it comes to explaining things to the general public, they’re often quite terrible at it.

    They really should hire PR firms before they release anything, to avoid situations such as this one.

    • iamsam6 April 17, 2013 at 9:40 pm #

      What is worse is that articles like this are being used against us “true” parents of children with autism like I just experienced. Someone kept finding articles that talked about autism being a “fad diagnosis”, fanning the flame of contention and offense because his intent was very obvious that this is what he thinks of the vast majority of all parents of autistic children, maybe even including me. That is offensive to me – people use these articles not to understand, or to gain compassion or empathy, only to infuriate others by strongly implying and outright accusing us as people who forced medical professionals’ hands in granting a diagnosis that is not so easily given.

  5. Catrina July 24, 2011 at 11:06 am #

    Although I do agree with him, I don’t think it was very smart to put it “out there” quite the way he did. Since my son has been diagnosed, and I’ve told some people I’ve heard things like “Oh really? I bet that’s what my kid has too!” Like, it is a cool thing to have. No, trust me, it isn’t. I always talk to the person further (because hey, their child MAY be, you never know), and explain all the different symptoms that my son had and what major hoops we had to go through to get him diagnosed, as well as the years of therapy we’ve already done and the years of therapy we have to come. Out of the dozen or so people that this happened with, most of them were like “Oh no, no. My child definitely isn’t Autistic, haha”. There was one lady, though, who did need some more help getting hooked up with resources to help her son, though.
    This comes back to slap us, though, because then we get ignorant people slapping their opinions at ourselves and our children when we are out in public. The librarian at our local library informed me that “She was so sick of all these parents making their kids out to be Autistic, when they are just brats”. Needless to say, we haven’t been back.

  6. usethebrainsgodgiveyou August 5, 2011 at 8:06 am #

    I tend to agree with the good doctor. He feels most of the kids who are getting labels these days as toddlers will grow up to be fine. It is difficult…they are not “typical” by any means, and aren’t brats by any means. I reiterate, he does feel the kids who may be labelled are difficult to raise. He spoke on The Coffee Klatch, http://www.blogtalkradio.com/thecoffeeklatch/2011/02/03/dr-allen-frances

    If you’ve got time, listen. He is not saying these kids who get the labels don’t have problems. He IS saying that we need to believe in them and quit medicalizing children who are difficult to raise.

    In the early days, I would have found his message offensive. Now, with my son at age 17, I’m praying he’s right. My son has come a long ways, in ways I would have never believed possible. I wonder if the most appropriate moniker might have been LD, especially Dyslexic. He was moderately autistic at age 3 according to school testing, but had Semantic-Pragmatic Disorder, likely to be manifested in an LD, according to his Neurologist. He might not have ever been labelled autistic but for the school.

  7. marian October 12, 2011 at 4:09 am #

    see real autism and maybe youd start to think there are disorders that are NOT autism and using the word autism terrorizes people

  8. Emma September 18, 2012 at 7:42 pm #

    I completely agree with him. I work in mental health and I see this first hand. It is a fad diagnosis, in my parents’ generation they’d have just had to get on with it, and they would. The current ‘sensitive’ approach to such things is only making it worse.

  9. Martin February 28, 2013 at 8:44 pm #

    I think it’s wrong to diagnos children. Because they’re brains havent fully developed yet. Later on in life that person could be very social and understand people very well. Even be considered socially gifted. And still walk around with a diagnos that he got as a child. That isnt fair. Can’t people just accept that when dealing with children they are dealing with an underdeveloped human in every single case? I mean. Common! They’re children! They’re suppose to be goofy, a bit dumb, energetic idiots that dont know left from right. And children are shy by nature. Then don’t HAVE to look you in the eye all the time and focus on ever single adult. They are allowed to have “a world of their own”! They have growing up to do! Be fair… Pardon me english…

  10. lynn April 28, 2013 at 1:22 pm #

    I’m 53 and a mental health consumer with a depression/anxiety diagnosis. I was insulted last year when I went to a new social worker: ‘where’s your aspgerger’s? I did not stay there. I am an introvert. Why add another pscyhiatric label to me? I am also a twin. Normal childhood.

  11. Victor marlow May 30, 2014 at 2:56 pm #

    I am assured that autism is just a fad diagnoses. Of course, there is real (significant) autism, but that occurs with much more rarity then what is being assessed. Nowadays, any white kid who likes science and doesn’t have any friends, gets labeled with autism. It’s probably more the case that people who are truly autistic, are never identified. That being said there is underdiagnoses in certain minority groups; middle easterners, Hispanics, but autism, in any sense that is still significant rare.

  12. jasonreeher November 6, 2014 at 10:57 pm #

    So my kid has autism, yours doesn’t; mine is special/smart, yours is slow and anti-social. Enough with this. It doesn’t exist, at least not at the diagnostic levels proposed these days.

    • Rohan Zener July 7, 2016 at 10:15 am #

      After years of crusading, i am positively surprised to finally find more than just one person who agrees with my general standpoint, especially on autism and its actual sociopolitical shape!

  13. Rohan Zener July 7, 2016 at 10:12 am #

    I think…oh no; i KNOW, that autism is nothing more than a criminal tool, being a trendy and legitimate excuse to infantilise and brutalise those who fail to fit in with societal expectations exactly. Having been branded myself, at my mother’s discretion of all things, i nearly went to gaol as a direct result of the brand.
    Trying the representatives of autism for crimes against humanity, shall be one giant leap for mankind indeed. We shall also have to throw the whole concept under the bus.

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