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Fueling the Fire: Autism as a "Fashionable" Disorder

By July 28, 2011

Dr. Allen Frances was among the lead doctors involved in creating the DSM-IV - the diagnostic manual which invented the autism spectrum we know today.  Asperger syndrome first appeared in that manual, as did the most recent incarnation of a disorder called Pervasive Developmental Disorder Not Otherwise Specified.  Typically, people with Asperger syndrome have strong speech and language skills but impaired social communications skills along with sensory dysfunction at some level.  People with PDD-NOS may be very similar to those with Asperger's - or may have some but not all of the symptoms associated with the most severe "autistic disorder."

Frances is not happy with the way in which the DSM-IV has been used and, in his opinion, abused. The new DSM 5 is due to come out in 2012 with the Aspergers and PDD-NOS diagnoses removed in favor of a more specifically described disorder called Autism Spectrum Disorder.  Language delays are no longer among the criteria for the new ASD, and it is unclear whether and how intellectual challenges (mental retardation) will be treated relative to the "new" autism.

In a recent blog post on Project Syndicate, Allen writes about what he terms the "Autism Generation."  In his opinion, the diagnostic criteria for which he was largely responsible have led to a huge movement toward over diagnosis and misdiagnosis.  While there is probably a small genuine rise in the incidence of autism overall, he says, the biggest problem is that autism has become a "fashionable" disorder:

The most likely cause of the autism epidemic is that autism has become fashionable - a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.

This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.

The Korean study paid no attention to the bias that haunts all epidemiological studies, which always overestimate pathology rates by including as disorder even very mild presentations that do not have clinical significance. It is entirely plausible that 3% of the population may have some smidgen of autism, but it is entirely implausible that so many would have symptoms severe enough to qualify as an autistic disorder. Reported rates should be regarded as an upper limit, not as a true reflection of the rate of actual mental disorder.

If Frances has read anything produced by or about the autism community in the last ten years or so, he surely knows that what he's written fits the category of "fighting words."  Not only because plenty of people will disagree with his perspective, but also because many will, in fact, agree wholeheartedly.

On some points, Frances is not entirely off the mark.  I am sure that the broad and general terms used to define autism spectrum disorders in the DSM IV are too vague and too inclusive to be terribly useful.  And I am sure that celebrities such as Jenny McCarthy, Jim Carrey and many others have played a big role in raising awareness of the term autism and thus increasing the likelihood of diagnosis.  There's no doubt that many people diagnosed with autism today would have had a different diagnosis or no diagnosis at all 30 years ago.

On the other hand, I know no parent who would choose to have a child with a "smidgen of autism" receive a full-blown autism diagnosis.  And its hard to believe that there are legions of doctors out there ready to hand out diagnoses to any child who builds a tower of blocks.  The idea that "services and entitlements" are sufficient to incite a diagnostic tidal wave seems absurd.   And while there may be a handful of adults who self-diagnose based on slight evidence, those self-identified adults aren't even counted in the statistics.

I'll be interested to hear others' perspective on Frances' piece.  Where is he accurate?  Where is he overstepping the truth?

More on Autism and the DSM IV and 5

How Changes in Autism Diagnosis Will Affect Your Life

The new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will make sweeping changes to the criteria for diagnosing autism. What will these changes mean to you and the autism community as a whole?


Why Asperger Syndrome Will Disappear

The new diagnostic manual (DSM 5) will be put into practice in 2013. When that happens, the term Asperger syndrome will disappear from diagnostic literature. Find out why.


Will New Diagnostic Criteria Mean My Child with PDD-NOS Is No Longer Autistic?

When the American Psychiatric Association changes its diagnostic criteria for autism spectrum disorders, many people will cease to qualify as autistic.


Will Children with Intellectual Delays No Longer Be Diagnosed with Autism?

How will the new diagnostic manual, due for publication in 2013, impact your child's autism diagnosis?


Comments
July 28, 2011 at 10:57 am
(1) SusanFordKeller says:

“On some points, Frances is not entirely off the mark. I am sure that the broad and general terms used to define autism spectrum disorders in the DSM IV are too vague and too inclusive to be terribly useful. And I am sure that celebrities such as Jenny McCarthy, Jim Carrey and many others have played a big role in raising awareness of the term autism and thus increasing the likelihood of diagnosis. There’s no doubt that many people diagnosed with autism today would have had a different diagnosis or no diagnosis at all 30 years ago.”

Well, then, this means that doctors must be star-struck dunderheads if celebrities can unduly influence the incidence of autism diagnoses. Love the paradox, too, that a diagnosis can be too “inclusive”! If not autism, or autism spectrum disorder, then what? How shall these disorders be classified? An analogy is heart disease – heart disease springs from genetic disorders or cumulative poor health habits. Heart disease can include something as benign as heart palpitations controlled by medication to a heart so diseased it must be replaced by transplant. It’s all still heart disease. There’s no rush to judgement or infighting over classifications. Whatever meds/treatments necessary are dispensed, which is as it should be.

I believe that the controversy is more rightly reserved for the source of the “singular genetic events (mutations)” in parents that have been discussed in other forums and posited as the reason behind the increase in autism incidence. How do we protect our genetic legacy?

July 28, 2011 at 11:30 am
(2) autism says:

Susan – you don’t have to be a star-struck dunderhead to be made aware of something as a result of media coverage. And the media has been all over autism for a long time.

No, I don’t think that doctors are likely to diagnose autism based on Jenny’s description on Larry King. But they may well watch Larry King and learn more about the disorder overall. They may well hear from mothers who watch The View. All of that adds up to greater awareness.

Lisa

July 28, 2011 at 10:20 pm
(3) Ken R says:

When was autism included in IDEA? 1992? Don’t you think that would do more to raise awareness than McCarthy’s public health jihad, which only dates to 2006?

July 28, 2011 at 10:59 am
(4) Robin says:

Yeah, let her live with children that have been “over diagnosed”. The one’s who run away from class into dangerous situations and have their sensory system overloaded causing teacher/student/school administration to just label them as misfits and problem children. While it may not be classic it IS Autism.

I hate people who try to use their education to ONLY make a name for themselves. Has she been hired by state governments who do not want to provide safe environments for these children or who do not want to teach them in a less than typical way?

July 28, 2011 at 11:28 am
(5) SusanFordKeller says:

Robin,

Maybe our current special education paradigm is part of the problem. Currently, public special education is not sufficiently funded, there is no meaningful oversight by the federal government, and there is no enforcement of our kids’ civil/educational rights (except in the most egregious of cases). Maybe it’s time for a medical insurance model to treat autism. The public health system has traditionally used the public schools to further their goals. But maybe it’s time to separate the two. Have the special education piece funded through and provided at the public schools. Have the related therapy services (OT, ST, ABA, etc.) funded TO each family and provided at the public schools or at home, wherever it’s most convenient.

July 28, 2011 at 11:35 am
(6) autism says:

Susan – you say “The public health system has traditionally used the public schools to further their goals. ”

I’ve never heard that said in quite such a straightforward way before; could you say more about it? For example, are you aware of a specific mechanism (policy? law?) that enables the health profession to actually place the burden of therapy on school districts?

So far as I have understood it, the educational system has funded the therapies you describe (but at the school’s discretion with the involvement of parents rather than vice versa). Special ed funding comes, to a large degree, from the federal and state government – not (so far as I’m aware) from any medical fund.

The idea of separation sure makes sense to me, though.

Lisa

July 28, 2011 at 11:28 am
(7) autism says:

Excuse, me, Robin, are you directing those vitriolic comments at me? What in the world would make you think I have any involvement whatever in making decisions relative to governments, schools, or institutions?

If you look at my bio, you will see that I am a parent and a writer. I am not employed by anyone to make policies on any of the subjects you mention.

As to your comment “it may not be classic but it IS autism” – well, that may very well change with the new criteria for autism. For better or for worse, the definition of autism is now and will be a moving target.

Lisa

July 28, 2011 at 12:49 pm
(8) Mom says:

The way I read Robin’s comment, was as if she was speaking of Dr. Frances, perhaps not realizing it was “Allen” Frances.

July 28, 2011 at 11:41 am
(9) Sandy-2000 says:

Would the diagnosis of PDD-NOS be considered “full-blown autism diagnosis”? Most people whose children have that DX just say their child has autism. When the majority of the PDD category, the main diagnosis given is PDD-NOS, one has to wonder about the misuse of it. Those who have a diagnosis of severe autism are the minority. We also know many doctors never test for other things that mimic autism, and many times when a child shows delays, a doctor will give a PDD-NOS so that child can receive services. Also where some insurance wont cover services if there is a PDD diagnosis, many insurances like mine required a diagnosis or they wouldn’t cover services. And then you do have McCarthy, who in an interview stated her child had something else, which did mimic autism. It was ‘fashionable’, in that case, it resulted in income for McCarthy. Years ago many would had been diagnosed MR, and I do think autism is an easier thing to digest than MR. Either are done by tests given, no real medical test to determine MR or autism and an IQ test can be flawed as well.

July 30, 2011 at 7:59 pm
(10) Dee says:

Any link for the information that the majority of cases are PDD-NOS? I’ve looked for a long time and can’t find any information about the numbers being broken down by the current DSM.

July 28, 2011 at 11:52 am
(11) Jen says:

The main problem I have with him making these statements is it is just going to make those who think we are bad parents with bad kids think they are right. That we failed at parenting, and thus have to go search out a diagnosis to make up for it. I have had many people give me advice, or tell me their kid would never act like my daughter. I have gotten the stares out in public. Instead of people understanding, now they are going to more firmly believe we are a generation of parents who, to say it plainly, suck. I have an Autism dx from 2 of the top Children’s Hospitals in Boston, yet people still question it…comments like this don’t help. And trust me when I say, my kid has Autism…

July 29, 2011 at 1:20 pm
(12) Dee says:

Right?! I WISH it were a “fashionable” dx and that it didn’t apply to my son. I have fought and fought my own denial and acceptance. I WISH this was just something that was a passing fad. I don’t think he realizes how many people are actually *hurt* by these words… public perception works against us who are working themselves to the bone to help our children.

July 28, 2011 at 12:01 pm
(13) Jen H says:

Autism is one “fashion” I wish my family did not have to deal with.
This seems to be yet another smokescreen to divert legitimate concerns for the rising number of Autism Diagnoses today. I see the fact that so many diagnoses of ASD now involve children without intellectual disabilities a real signal that something is very wrong, something is causing this set of neurological symptoms in these children.

July 28, 2011 at 12:02 pm
(14) jodifla says:

Speaking, as the mother of a child with severe receptive language delays that the school system was gung-ho to label with autism, and who personally knows MANY other parents in the exact same boat, here are my comments:

First of all, Allen Frances is a man, and a doctor, and one of the people who added PDD-NOS and Asperger’s to the DSM in the first place. His regret is that the criteria written in the DSM-IV (and there are STRICT criteria that were meant to be followed) are not being followed strictly by those doing the diagnosing. And those doing the diagnosing don’t have to be certified in ANY way, nor do they have to have ANY training to do the diagnosing. Lots of parents go to whoever their insurance will cover, or whoever has the first available appointment, WITHOUT finding out the person’s actual accuracy rate.

30 years ago, a child like mine would most likely have been considered to have, well, what he has — a severe language disability. Today though, because so many school personnel and poorly trained doctors and psychologists think of autism as a “spectrum” my child and those like him are considered as autistic. This does not help him and if fact leads to all kinds of wrong therapies.

Actually, MERLD (Mixed Expressive Receptive Language Disorder) is right there in the DSM as well (315.31) but even most SLPs haven’t heard of it.

July 28, 2011 at 1:04 pm
(15) kay says:

We are in that boat also. My kids have a genetic condition linked to neurodevelopmental delays which is most likely responsible for their language processing delays and motor coordination issues. Because some of their symptoms have a resemblance to autism, that seems to be what psychologists involved in their cases seem to latch onto as the default explanation, even though it misses the mark and there’s more that doesn’t fit than does. I know that probably the majority of kids who get autism diagnoses really do have it and really do need that type of therapy and help, but the problem of it being a fad diagnosis is very real. Psychologists and developmental pediatricians don’t want to take the time to get a full understanding of each individual kid’s challenges and concerns. It’s much quicker to just do a quick interview and slap an autism label on them, even if it creates a hinder to getting help for what the real problem is.

July 28, 2011 at 1:13 pm
(16) SusanFordKeller says:

Part of the problem is the disability code on the IEP. There are only so many codes that are accepted. So, if your child has a disorder/disability which is not well known or well understood, which disability code is assigned? Doctors may indeed be doing parents and children a favor by diagnosing according to the accepted disability codes.

July 28, 2011 at 12:08 pm
(17) jodifla says:

Another note: Many other doctors are writing about this overdiagnosing problem as well.

The late Dr. Stanley Greenspan wrote about it several times, including in his book The Child With Special Needs. He also devoted more than one radio address to sloppy diagnosing on the part of his colleagues:

http://www.icdl.com/distance/webRadio/documents/10-8-08b.pdf
The Misdiagnosis of Autism Spectrum Disorders:

Today’s show we are
going to entitle the Misdiagnosis of Autistic Spectrum Disorders.
More and more, in my clinical practice and from talking to colleagues, I have
encountered families where children have been given a diagnosis of an autistic spectrum
disorder, or PDD or frank autism and when I studied the child carefully, observing
parents and children interacting for long periods of time and do a little bit of what we call
coaching on helping the parents interact even more effectively with their children, we
observed that the child really does not deserve the diagnosis of autism and is really not on
the “spectrum.” The child often has what we call a series of processing differences –
maybe over-reactive to sound or touch, or very under-reactive; they may have low muscle
tone; or severe motor planning or sequencing problems where it’s hard for them to carry
out many actions in a row; they may have difficulty with language or comprehending
what they hear – perceptive language and certainly often expressive language; and they
may have difficulty with comprehending what they see. …

July 28, 2011 at 12:16 pm
(18) jodifla says:

And here’s another article, this time from the Henry Ford Center for Autism and Developmental Disabilities, one of the leading hospitals in Southeast Michigan:

http://www.associatedcontent.com/article/2941632/detroit_experts_say_autism_is_overdiagnosed.html?cat=5

Autism is often misdiagnosed, according to Henry Ford specialists.

A proper diagnosis of autism spectrum disorder should be made by a team of specialists, said Dr. Colleen Allen, program director of the Henry Ford Center for Autism and Developmental Disabilities (CADD), with locations in Detroit and West Bloomfield.

… ince Henry Ford’s CADD program opened in July 2008, only about 25 percent of 300 children evaluated have met the criteria for an autistic spectrum disorder, Allen said. The two- to three-hour evaluation includes a speech-language pathologist, a geneticist and a developmental pediatrician, as well as a child neurologist and a child psychiatrist if necessary. Most of it is often covered by health insurance, and the Ethel and James Flinn Foundation in Detroit has provided a $50,000 grant to support the mental health portion of the diagnostic evaluation, Allen said.

The CADD diagnoses of autism are much lower than what would be expected based on CDC estimates that one in 110 children in the United States has an autistic spectrum disorder, Director Collee Allen said.

…”When I started 30 years ago, autistic behaviors were very extreme and autism was rare,” said Dr. Barry Wolf, a geneticist, pediatrician and member of the CADD team. “Now, you can hardly find a family that doesn’t have someone who has been diagnosed with autism. I don’t think the incidence has increased so much. The labeling has increased dramatically.”

July 28, 2011 at 12:21 pm
(19) Sharon Hogstad says:

Does that mean that my hand-licking, object chewing, socially and developmentally delayed, overly trusting, computer-obsessed, sound and smell sensitive 7 year old granddaughter will not qualify for an IEP in the future because they changed the name of her Asperger diagnosis?

July 28, 2011 at 12:34 pm
(20) jodifla says:

Actually, it would hopefully mean that your granddaughter would get more specialized treatment for her Asperger’s because all the children will all the other issues who are skewing the research would be moved out.

One of the researchers spoke to said teachers can no longer recognize true autism, because they spend so much time working with children who are labeled autistic but have other issues. So if a class of 8, six greatly improve, but they are left wondering why the other two — with the true autism, weren’t progressing.

July 28, 2011 at 12:52 pm
(21) autism says:

Sharon – Jodifla is correct: if your grandchild is behaving as you describe, she would certainly wind up with an autism spectrum diagnosis. She’d also receive a severity designation based on “functionality.”

Of course the devil is in the details; I am continuing to search for more and better info about what “functionality” really means, and how such levels might be determined… I don’t think ANYONE has a clue how services will fit into all that.

Lisa

July 28, 2011 at 1:49 pm
(22) vmgillen says:

-remember the study that showed “clusters” of Dx’s based on one family getting it, educating their pediatricians on what to look for and talking to other parents? It sounds sloppy the way I’m summarizing, but it was a decently constructed and conducted study (unlike so many others!)

Increased “awareness” inarguably has an effect on Dx rates – parents can advocate for consideration of certain possibilities for their children – both diagnostic and treatments. Consider the $$$ paid by pharmaceuticals to “raise awareness” (advertising) for their products – you know they find that to be money well spent.

I can personally vouch for three cases where a dual Dx was sought, and secured, to facilitate access to supports and services…

And, viz medical and school systems, while not totally on-topic: the military insurance coverage CHAMPUS used to require a letter from local government (usually schools) stating that any service or supply was not available through local funding before they would pay for it – this blew me away ’cause military populations don’t really contribute to local tax base, and, c’mon: a wheelchair?

July 28, 2011 at 1:53 pm
(23) Karen says:

I have to say that I’ve often sensed that there was a trend toward labeling anyone that was “different” or “eccentric” or “labile” as being autistic. I sit and watch my son at 14 with a vocabulary of roughly 100 words, still occasionally incontinent, never having had a friend and never seemingly concerned by this, who has full blown hole-in-the-sheetrock-via-his-head meltdowns because the dog barked …then I watch my son’s friend who has a giggle, play, ask for a sleepover, spend a week at sleep-away camp and make amazing lego dinosaurs and get B’s in regular classes at school and she says he’s autistic, needs a 1:1 aide at school and autism rules their home?….
I understand 100% that it’s a spectrum but perhaps the spectrum has been stretched a bit too far? These 35 year old adults who are singing with joy because they’ve been recently diagnosed autistic so they can finally explain their difficulty around people and need to sleep with the blankets on even in the heat of summer?? If you’ve made it to 35 without a diagnosis and can write about it and express joy than I’m thinking that you really are NOT autistic.

July 28, 2011 at 1:57 pm
(24) Karen says:

I meant to say I watch my FRIEND’S son…not my son’s friend…

July 28, 2011 at 4:51 pm
(25) Catsidhe says:

I made it to 36 without a diagnosis because the diagnosis simply didn’t exist when I was young enough for intervention, and almost all the attention in the intervening time has been focussed on the children.

By the time a HFA, whether Aspergers, PDD-NOS, or whatever, reaches adulthood, they have most likely learned workarounds for some of their more debilitating deficits. These workarounds don’t work in the same way as NT processes, and fail in different ways under different stresses. And there is continual anxiety and self-consciousness about them being workarounds, second-rate patches in the effort of pretending to be like those around us. We are always aware that we are different, even if we aren’t able to grasp exactly how or why. A diagnosis in these circumstances gives us a chance to regroup and realise that there is a comprehensible framework behind our lifetime of failures at the simplest of tasks. And there are some things that don’t have simple workarounds. I have a form of faceblindness where I can recognise faces, but I can’t visualise them in my mind’s eye. I can’t tell you what my own children’s faces look like unless I’m looking at them. I have an atrocious working memory, only moderated by memory tricks I’ve picked up over the years. In most people’s cases, they would be memory masters with these techniques. In my case they bring me up to barely adequate. And most people would never need to learn them in the first place. And the anxiety (it’s not just ‘difficulty around people’). And the depression. And the APD, and the light sensitivity, and…

July 29, 2011 at 5:14 am
(26) Michael says:

I am 46. Two years ago I sought evaluation for autism and received a diagnosis of Asperger’s from the Emory Autism Center. I sought it because I have been plagued with disabling sensory, social, and executive function issues for much of my life, and had a stack of mental illness diagnoses that didn’t fit, and a cornucopia of medications tried on me that didn’t change anything.

Asperger’s was unknown when I was in my youth; and because of my prodigious vocabulary, conventional wisdom back then wouldn’t have considered me autistic.

I am not joyful to have an autism diagnosis. I am satisfied to have one. It fits.

Unlike Catsihe, I have reached adulthood and beyond with few ‘workarounds’. After flunking out of university, I went through 21 jobs in 3 years, was a transient for another 3, and then with the assistance of my parents I secured social security disability at the age of 27, which I have been existing on since.

But it’s not all bad. I’ve got my strengths, in an ideal environment. Acute vision, hearing, touch, smell – It’s not really ‘attention to detail’…It’s continual awareness of details the neurotypical brain filters out most of the time. I wish I could filter it out at will some of the time but I can’t. My curse and my blessing is that I experience the world in exquisite detail.

Karen. It is unfortunate that your autistic son is intellectually disabled. I’m probably going out on a limb here, but I theorize that SIB as a result of sensory overload is tied to difficulty with or inability to reason things out to some degree. I’m not sure what I’m trying to say here or how to say it – I’ve spent a couple of hours on this already. So I will just finish this up my saying that just because I internalize my reaction instead of banging my head against the wall or biting myself etc when I experience overload doesn’t mean that it is any less intense for me or that I am less autistic.

July 29, 2011 at 5:32 am
(27) Michael says:

I have to ammend that there are degrees of intellectual disability. I think perhaps due to my moderately severe executive function difficulties, I too fall into the ranks of ID, but at least have going for me an obesssion with patterns and a solid understanding of cause and effect.

July 28, 2011 at 4:35 pm
(28) Charli says:

I’ve read your article with great interest. In fact, it was posted by one of our members on the GRASP forum of autistic adults. I am one of the adults you mention who self-daignosed myself as an aspie about 10 or 12 years ago. My diagnosis has since been confirmed professionally. I did not daignose myself “on slight evidence.” I have always been seriously impaired by Aspergers; I just did not know the name. When I was a child, I was labelled a misfit or a gifted child with behavioral problems. As an adult, my autism has caused me to spend most of my life alone, unable to make friends, relationships, and I always been either unemployed or unemployed. However, I do agree with much of what you have written. Since being professionally diagnosed, I have met many individuals on the spectrum who seem perfectly normal to me. Yet if I just shyly venture an opinion that autism may be overdiagnosed today, there is a very negative reaction as if I were trying to throw someone off the spectrum This is difficult for me understand as I cannot see why anyone would want to call themselves–or their child “autistic” when they are only mildly impaired.So you should be prepared for the deluge of angry responses that you are sure to receive.

July 28, 2011 at 4:42 pm
(29) autism says:

Charli – thanks for you note, and warning. Since most topics in the world of autism are very divisive, I’m kinda used to the negatives… if it gets too crazy, I do close the thread.

BTW, my remark about “slight evidence” was in response to Dr. Frances’ comment that “many creative and normally eccentric people have discovered their inner autistic self.”

My guess is that there are a handful of people such as Frances describes, but probably not more than that. As you say, it’d be pretty “off” for a “normally eccentric” individual to choose to define him/herself as having Asperger’s, so I’d think such a thing would be pretty darned rare.

And of course no one who is solely self-diagnosed (whether on slight or very solid evidence) will show up in the medical stats, since they aren’t listed there.

Best,

Lisa

July 28, 2011 at 11:20 pm
(30) Ann says:

Sadly, adults with HFA and aspergers are still being under diagnosed and misdiagnosed. Mental health professionals are especially bad at diagnosing adult females.

People also forget that autism is not a child’s disorder. Adults have it too but many have gone without a diagnosis. Many are misdiagnosed with things like schizophrenia and personality disorders.

July 28, 2011 at 5:36 pm
(31) Dadvocate says:

This is good evidence why the DSM should split off Asperger’s into a separate disorder. While some diagnoses of the disorder are appropriate, desireable, and important so kids and adults can access services and supports, I think that there is more than a little gaming the system going on with some Asperger’s diagnoses, which I don’t find to be the case at all in diagnoses for autism subtypes like “classic” or pdd-nos or autism as a secondary function of another neurological condition (like epilepsy) or injury.

It’s both sad and maddening that here are many many folks who, when their kid doesn’t test the way the parents think the kid should to get into the college of their dreams, are going to go shopping for a diagnosis so they can get an IEP and modifications (like extra test time, use of a computer, etc). I think Asperger’s is high on many of these shopper’s list of disorders. Again, that is not to say that Asperger’s isn’t real. It is and I hugely support their advocacy efforts. But I also support rigorous diagnostic evaluation for Asperger’s. I think that isn’t being done in many cases and ought to be and that “self-evaluation” is never appropriate.

July 28, 2011 at 9:45 pm
(32) Nick says:

Lisa Jo,

I thought your take was pretty spot on.

July 28, 2011 at 10:29 pm
(33) AutismNewsBeat says:

The idea that “services and entitlements” are sufficient to incite a diagnostic tidal wave seems absurd.

I’ve always understood that diagnoses follow services. Why is that absurd?

July 29, 2011 at 7:16 am
(34) autism says:

ANB – if services and entitlements were enough to cause a diagnostic tidal wave, then every disorder would be increasing exponentially as autism has.

I am sure there is SOME diagnosis for services. But the idea that the huge increase in autism diagnosis is caused directly by the fact that services are available seems absurd to me.

Lisa

July 28, 2011 at 10:44 pm
(35) Ann says:

I am an adult female who is married, has kids and works. I am also diagnosed with asperger’s syndrome and I am sure by Dr. Frances opinion I would be one of those he would consider part of that overdiagnosis. But let me tell you this… I was misdiagnosed with schizophrenia before I was correctly diagnosed because of my autistic traits including my rocking, lack of eye contact, my literal understandings, my different way of trying to explain things and my ‘odd’ viewpoints and my perseverating on things. Where did this misdiagnosis get me? It got me put on anti-psychotics which DO NOT change autistic traits but instead ended up giving me permanent tics.

Dr. Frances doesn’t realize how many adults with asperger’s are STILL being misdiagnosed and mis-medicated. If we don’t correctly diagnose people we fail to help them and their Drs understand what is truly going on. I am glad to know that I am autistic because now I understand what I have and why I do the things I do and why I am different. When I go see a Dr I do tell them I have aspergers now because I know it is important for them to know and it helps them understand.

Right now I don’t think autism including asperger’s is being over diagnosed but rather misdiagnosed and under diagnosed. I hope more mental health professionals become educated on it and are able to identify it better in adults, including females.

July 29, 2011 at 10:29 pm
(36) Lisa says:

Anne – from what I have learned about the new criteria, you would probably still be considered to be on the autism spectrum. The symptoms you mentioned – perserverations, stimming, etc. – are very specifically described in the new criteria.

Essentially, the DSM 5 removes language-related issues from the criteria altogether, and has some rather weird language related to excluding people with MR (intellectual challenge) if their symptoms could be explained by MR alone… they SAY that MR would not exclude an autism spectrum diagnosis, but the wording is a big squirrely.

So a person of normal intelligence with perseveration and sensory issues seems to be a shoe-in for an autism spectrum diagnosis.

Lisa

July 31, 2011 at 8:53 pm
(37) Ann says:

My point though was that to some the fact that I am high enough functioning to work and have a family would mean I don’t need a diagnosis. That is why I explained my story and why it is important for people with asperger’s and high functioning autism to be diagnosed.

Mis-diagnosis and being put on harsh medications is very common with people with asperger’s and that is just one reason why it’s important to correctly diagnosis.

I do believe autism is very common. The Korean statistics of 1 in 38 people being on the spectrum makes sense. I do think autism is more common than schizophrenia or bipolar as well. In fact, I think anytime something goes wrong environmentally, genetically or both, I think autism(or the group of characteristics we call autism) is one of the first things that occur. It could be because the social, more ‘modern’ part of the brain is affected first making complex thinking more difficult. You can see anything that takes complex thought and the different parts of the brain to work together is difficult for those on the spectrum. Of course I understand all of this is just my opinion.

July 29, 2011 at 3:47 am
(38) Belgis says:

Really Nice article,
is it true that the physically impaired and mentally retarded ended at age 18?why 18?
Thanks in advantage

July 29, 2011 at 7:47 am
(39) autism says:

Belgis – are you asking whether SERVICES end at age 18? If so, then no, services through the schools continue through age 21.

Services for adults with MR are also available through social security and other agencies. Autism is trickier, since many people with autism don’t qualify for social security (though many do).

But it is true that services fall off very steeply once a child ages out of the school system at age 22.

Lisa

July 29, 2011 at 12:52 pm
(40) vmgillen says:

Perhaps Belgis is actually looking for “developmental disability” definition? DDs are diagnose before adulthood, and generally a wider array of services for adults are accesseed with a Developmental Disability.

July 29, 2011 at 8:50 am
(41) Mary Cavanaugh says:

As an autism mom, researcher, and expert I don’t understand this movement to normalize “autism” Autism is man-made and comes from heavy metal toxicity. I proved this to my insurance company when I won my 2nd appeal in proving my daughter’s case (PDD-NOS) We have to come to the realization that there is a sub population that cannot take the neuronal insult of the toxic insult of the vaccines. The toxicity of the mother while in utero is also playing a part. Once the toxicity reaches the threshold it crosses the blood brain barrier and becomes “autism”. The way I see it the government is playing a part in deciding how are brain should function. This is why “autism is different in everyone.
The toxic insult is disconnecting the pathways of the neurotransmitters. EDUCATE BEFORE YOU VACCINATE! http://www.thinktwice.com

July 29, 2011 at 7:57 pm
(42) Eileen says:

Mary, May I ask what exactly qualifies you as an expert? Autism has been proved to be largely genetic in cause. To date over 300 genes specific to autism have been discovered, and this is only the tip of the iceberg. The Human Genome Project will keep discovering these genetic markers. In addition, the most recent discoveries into the environmental causes, point to in utero factors, such as maternal age, depression, medication, etc. The recent study of increased prevalence in fraternal twins indicates that it is prenatal environmental factors at work. And to date, there have been 18 studies finding no link between vaccines and autism.
Furthermore, treatment along those lines is ineffective. Chelation is meant to remove lead, not mercury. Mercury damage is permanent, irreversible. In fact, chelation may actually cause brain damage but freeing up mercury stored dormantly in cells, and the mercury then travels to the brain. Also there is big difference between methyl mercury and ethyl mercury.
Bottom line, vaccines don’t cause autism. Vaccines save lives, and not vaccinating endangers your child and everyone else’s, especially children who are immune compromised due to cancer or chemotherapy.
By the way, I have two daughters with autism who are fully vaccinated. Their health and well-being are my primary concerns.

July 29, 2011 at 9:20 pm
(43) Sharon Hogstad says:

It is nice to hear a voice of reason out there. My autistic grandaughter is allergic to eggs and can’t have some vaccines. Her parents and I are hoping she can start getting nasal spray vaccines soon. Maybe then she could make it through a flu season without going to the hospital.

July 30, 2011 at 12:40 am
(44) Maurine Meleck says:

Eileen, You are way off track. New study just out from California-CATS(california autism twin study) which found a much higher percentage of children with autism who are fraternal twins and a smaller percentage who are identical twins…. biggest study on twins ever done—environment trumps genes by a long shot. regarding chelating mercury -yes you can. You know nothing about chelation or bio-med treatments. I recovered one of my granchildren from the autism spectrum-we did all bio-med.
May I ask YOU what makes you an expert?

July 31, 2011 at 9:18 pm
(45) Ann says:

I use to think the idea that autism is caused by toxins was silly. I am diagnosed with aspergers and there are others in my family that have strong aspie traits so I was convinced that it was genetic. Recently I had a test show that I have a mutation, a mutation that causes my body to not get rid of heavy metals and other toxins very well. This surprised me and made me reevaluate. Now I am thinking this could explain how in some people autism is both environmental and genetic. Maybe sometimes people pass down genetic mutations to their children that make them more susceptible to toxic damage. Maybe for others it’s a spontaneous mutation that their parents did not have. And maybe this is why it appears like autism gets worse with each generation? I come across a lot of people with asperger’s who have children with severe autism. Maybe the toxicity has built up or has increased in the environment.

August 1, 2011 at 9:14 am
(46) Sandy-2000 says:

But would it be autism, or the result of heavy metal poisoning which mimics autism? The other difference would be is heavy metals also affects other organs than just the brain, like the liver and kidneys. That type of mutation would be an issue life-long on exposures and re-exposures to everyday toxins.

July 29, 2011 at 3:41 pm
(47) Julie L. says:

I am shocked to even read this. I mean seriously, the guy wrote the diagnostic criteria himself, and you need “x” amount of this category and two of another and “x” of another in order to diagnosed. It should be pretty straightforward enough to diagnose, wouldn’t you think? Ugh! I think these are fighting words too!

July 29, 2011 at 7:56 pm
(48) Dee says:

Echoing many of these comments… particularly frustrating is the use of the word “fashionable”. It could be said that autism is still poorly defined and the “spectrum” represents a range of autism that need more clarification. But to say it is fashionable is to disregard the pain, struggles and hardship that come along with the dx. It is callous and irresponsible. Shame on you, sir!

July 29, 2011 at 8:01 pm
(49) Eileen says:

Hey Folks,

Just checked out Mary Cavanaugh’s website. She is in the business of selling “supplements,” thus her passionate toxic poisoning comment.

July 30, 2011 at 12:42 am
(50) Maurine meleck says:

BTW-new DSM won’t be available until 2014. They are way behind. I wouldn’t care if it takes until 2050 as autism does not belong in that book

July 30, 2011 at 12:49 pm
(51) Aut1lockout says:

Don’t worry, Maurine. There are plenty of other books you can burn between now and then.

July 30, 2011 at 1:08 am
(52) Mary Cavanaugh says:

Yes I am in the business of selling a glutathione accelerator which happened as a result of my daughter’s real diagnosis which she received at age 13 of heavy metal toxicity. She was off the charts in copper, magnesium, and very high in manganese. Research shows children with “autism ” are low in glutathione. If you are low in glutathione you cannot deplete the toxins which enter your body. She became so violent when she hit puberty that I feared for my life and hers. please visit http://www.safeminds.org The symptoms of heavy metal toxicity mimic autism.
I am not saying don’t vaccinate. I’m saying educate before you vaccinate. The autism rate from the 1980′s to the 1990′s escalated to 1 in 10,000 to 1 in 150. Something has gone very wrong. One in two children in the US have a chronic health condition and one in four children in the US have a learning disability. Please also visit the website http://www.thinktwice.com and see how many parents who witnessed their child loose their skills after the vaccines. If parents would attend just one major autism conference and then visit their child’s classroom this would be all over. I also have the perspective of a substitute teacher. The tragedy in all this is these kids are smart. Since autism is a brain injury and affects the central nervous system, many children struggle because their cognitive skills are compromised. If you have too many messages going to the brain at the same time, the brain shuts down through no fault of the child’s. These children need to make more neurotransmitters so these messages have a way to travel to the CNS. This has caused an imbalance of the brain. What is not being talked about is that autism is all over inflammation and oxidative stress. This is a factor in why we hear that our children will not live as long as us.

July 30, 2011 at 8:18 am
(53) Lisa says:

Mary, I appreciate your involvement in the conversation, and I am certainly not going to argue with you about your individual child’s medical care.

That said, there is NO reason to believe that autism is going to be cured by taking supplements. If it were possible to cure autism with a pill, trust me, we would be curing autism with a pill.

In addition, the topic of vaccines is NOT the topic of this blog post. While I understand that people have strong feelings about vaccines, there is more to life – ours and our children’s – than an ongoing and unresolvable battle about vaccines.

Please don’t sell “cures” and products on this thread. It will simply lead to angry responses and, in the long run, to my ending the thread altogether.

Thank you,

Lisa

July 30, 2011 at 3:48 pm
(54) Mary Cavanaugh says:

I have spoken to a brain researcher of 30 years who happens to be in both of the companies that I am associated with. She is also an aspie mom and a mother of a child who suffered oxygen deprivation upon birth. I confirmed with her in May that the two things to do to recover autism is to detoxify and make more neurotransmitters. To see her work at her center go to http://www.brainadvance.org. Her name is Dr. Corrine Allan.
I also spoke to Dr. Colbert who is a Dr. in one of my companies. He is a New York Times best seller and he has an international patient load. He practices both family medicine and integrative medicine. He agrees with Dr. Corrine Allan. His website is drcolbert.com Listen to what he says on livestream in regard to health. It is life changing!
I urge all of you if you haven’t already to attend next years generation rescue-autismone conference. It was free for parents this year. You and your child’s life will be forever changed.
Thankfully we have the knowledge that our brain is neuroplastic. When the biochemistry of the body is not compromised, the body can heal itself.
We all need to be open on this subject of autism and vaccines and not be afraid to question people in “authority”
One out of every 2 children in America suffer from a chronic health condition. One out of every 4 children in America suffer from a learning disability. We need to start asking ourselves why?

July 30, 2011 at 9:48 am
(55) Sandy-2000 says:

The thing with ending a thread when the topic goes south is then those comments should be deleted instead of left there for others to wonder. The last thing any blog needs is near the end to read “What is not being talked about is that autism is all over inflammation and oxidative stress. This is a factor in why we hear that our children will not live as long as us.” and nothing beyond that, which makes it appear true. Going south also started right in the beginning of the comments as well.
Heavy metal toxicity does mimic autism. But it isn’t autism. Heavy metal toxicity also generally has long lasting neuro affects. Copper, magnesium and manganese are all found naturally to the earth, all essential trace nutrient to humans and all effect organs like the liver when there’s high amounts. Liver damage can also happen with high doses of supplements as well. Interesting, there are copper toxicity diseases and one would be Wilson’s disease, often diagnosed in teen years. Low amounts of copper can cause disorders as well so one would have to seek medical advice before treating anything with OTC products. I’m not sure what copper, magnesium and manganese has to do with autism or vaccines. Toxicity generally is industrial or OTC products. Toxicity of any of the 3 can cause psychiatric, cognitive and motor issues but generally results in other named disorders, not autism since that is a DSM diagnosis and I have never heard children with autism will not live as long as their parents. I have never heard such a statement to be true.

July 30, 2011 at 10:19 am
(56) Lisa says:

Sandy – I have tried editing and deleting individual comments. The result is that the people who write the comments feel that I am censoring them; meanwhile I wind up spending all day editing, deleting and responding to disagreements.

It is perfectly possible that, due to location or some specific set of exposures, Mary’s daughter had high levels of specific metals in her body. We don’t know her history, and we can’t comment on her personal circumstances.

What’s more, as we’ve discussed, as per the most current DSM criteria, if a child’s symptoms are identical with those described in the DSM IV, and they occurred prior to age 3, then they are considered to be autism – regardless of known or unknown cause. Thus, it is possible to have an accurate autism spectrum diagnosis even if the CAUSE of the autistic symptoms is known to be Fragile X, lead exposure, or valproic acid.

Lisa

July 30, 2011 at 3:29 pm
(57) Mary Cavanaugh says:

Behavior is how a child sees, how a child hears, and how a child feels. Children who have autism and never received vaccines became toxic while in utero. Couple that with the hormones in the breast milk and the toxicity continues to build up in the body. We know we have toxins in our environment as well. These children’s bodies are compromised in their ability to detoxify.
I am not about selling products from my companies. I am about sharing knowledge about how I was able to begin recovering my daughter. It is an absolute fact that my daughters organic urine profile test showed a compound called aconitic to be very high. This showed her glutathione levels to be very low. This is also backed up by research that is already out there. My daughters violent meltdowns stopped once I raised her glutathione levels.
Right now in my town and all across this country children with autism are being drugged. This is not only making them more toxic but it is now having an effect on their heart. Russ Scala who has expertise in nutrition and cardiovascular disease who lives in my town shared his website with me. http://www.e-juven8.com It is a real eye opener for me.
The reasons vaccines target boys more than girls is there is a hormonal component with the testosterone. If you visit any middle school today you will see boys that look like they could be in 3rd grade and boys who look like they could be seniors in high school.

July 30, 2011 at 5:03 pm
(58) Sandy-2000 says:

You can only speak about your own experience and cant judge others for the use of ‘drugs’ and then a general statement about it being toxic and the effects of their hearts. You also can only speak about your own experience per your child’s autism; you have no idea who ‘became toxic while in utero’ or what caused autim for others. And as if girls don’t have hormones for vaccines to effect? Are you know going to pitch Lupron too?
Generation Rescue and Autismone has nothing to do with this article and the DSM.

July 30, 2011 at 5:33 pm
(59) Eileen says:

Mary,
Your comments may well be true for your daughter, and if they are, who knows if she even had autism at all. Years of research indicate that autism is a genetic disposition, perhaps augmented by environmental exposures in utero. The stuff you are speaking about is not part of any mainstream medical thought. As far as middle school boys, I have taught middle school for the last 20 years, and there are always some boys who grow early and others who have a growth spurt in 10 grade. It was the same when I was in school. You seem to think you know everything, but don’t you wonder why nearly every respected physician in the country, those who attended Harvard, Johns Hopkins, etc., disagree with you? Sure there are doctors who will do this stuff, but the overwhelming majority will not. What does that tell? If you cry conspiracy, then I will know we have nothing further to discuss.

July 30, 2011 at 10:36 am
(60) Sandy-2000 says:

I don’t disagree that anyone’s child had high levels of heavy metals, and I didn’t disagree. But we can certainly discuss the 3 named metals as well as toxicity of supplements and that autism is ‘inflammation and oxidative stress’.

As for “if a child’s symptoms are identical with those described in the DSM IV, and they occurred prior to age 3, then they are considered to be autism” I imagine that practice is how the DSM was abused, by not looking for medical causes such as heavy metal poisoning or chromosome anomalies.

July 30, 2011 at 10:59 am
(61) jodifla says:

An earlier poster made a comment that autism was “easy” to Dx….it’s two requirements from this category, more from these other categories….simple!

But in reality, people who diagnose it all the time will tell you it’s NOT that simple. First of all, the definition is squishy enough that Child A can go to five different evaluators and come away with five different Dxes. You see this all the time on various message boards — three doctors told them their child wasn’t on the spectrum, but the forth was said the child was. So who to believe? Hopefully, you’ve done your homework on these doctors and now their diagnostic accuracy rate. These children often do have issues, and many of them are language-based.

Second, as explained in other posts, a lot of the diagnosing is actually just labeling down by schools, who don’t really need to follow ANY criteria — they can literally sit in their IEP group and vote the child as “autistic.”And these numbers are reported to the CDC as have incidents of autism.

July 30, 2011 at 6:07 pm
(62) Lisa says:

It seems that once again we are seeing posts that are all about dueling doctors and study standoffs – and, once again, all about vaccines.

Mary, I think you’ve made your case here. You’ve cited your doctors and included your links. If anyone wants to explore Mary’s information, they now have to the resources to do so.

Just to be clear, though, there is literally no one in the mainstream medical community who believes that “the two things to do to recover autism is to detoxify and make more neurotransmitters.” If anyone here does decide to go that route, they should be very clear that the choice goes contrary to what almost every established medical practitioner would recommend.

As regards the topic of vaccines, I think it’s been covered. Thoroughly. Over and over again. Both here and elsewhere.

Thanks,

Lisa

July 30, 2011 at 8:27 pm
(63) Sharon Morris says:

I blogged on this topic last week too Lisa. See How to Solve A Problem Like Allen Frances @ http://sharon-theawfultruth.blogspot.com

July 30, 2011 at 8:54 pm
(64) Sandy-2000 says:

I don’t think Dr. Allen Frances really thinks ‘scheming parents manage to fool the speech therapists, developmental psychologists and pediatricians into giving perfectly normal offspring this label’. It is to my understanding these children did have delays and issues that deserved attention and intervention. However, when half of all possible diagnosis within the PDD category is PDD-NOS, which is a catchall DX for those who don’t land into any other diagnosis, one wonders about the use of it, if those kids really have PDD-NOS/ related to autism or are the delays displayed caused by something else. McCarthy for instance- went to a doc and had a diagnosis, but she ‘knew’ that wasn’t right so off she went to Dr. Sears for an autism diagnosis, and he wrote it out. Then in an interview McCarthy often stated her child was recovered, but then he had a different disorder so one has to wonder how that affects that recovery or did she recovery a different disorder than autism. That type of publicity
would make anyone question the rates and use of diagnosing. I question it.

July 30, 2011 at 11:01 pm
(65) Dee says:

Half are PDD-NOS? Please share your source, Sandy. I can’t find any credible info breaking down autism into current DSM categories.

July 30, 2011 at 11:10 pm
(66) Sandy-2000 says:

Good place to look would be this blog, a few topics back.

July 30, 2011 at 10:20 pm
(67) jodifla says:

Well, exactly. Just look at the the article I posted from an autism CENTER whose director said basically, look, out of hundred of referrals we had, only 25 percent were autistic. And these were children who had been referred to the center because the thought the child had had autism, NOT the general population.

August 1, 2011 at 4:06 pm
(68) stefanie says:

i have autism severe si an ld there is nothing fashinbe about it those me an my friends think alot of kids are geting the dx in oder to get severes wict is wrong i think if a child has just severe speech delys an stuff that not autism but dose quilfy for st .but now any child with spech dealy or social dealy will get a autism dx of some kind it good there better dx .but i do belive dsome are miss dx also alot of us that become hf some have kids an are kids have it to but when i was growing up it was 1 in 10,000 .i was showing dealys as a baby i never regress .so dont no what to say /it took along time for me to become on the leavel i am an i still am not hf in lot of areas ,.so i understand the connfusion

August 2, 2011 at 7:03 pm
(69) Ann says:

I don’t believe it was ever 1 in 10,000. I was born back then and they missed me and many others. A lot of people with high functioning autism were misdiagnosed as being mentally ill or schizophrenic and sadly are still misdiagnosed today.

August 11, 2011 at 12:59 pm
(70) EnjoyHi5Autism says:

Excellent review of changes in Autism diagnosis and DSMIV for APA DSMV. Hope our doctors, evaluators and assessment teams are provided trainings/seminars. Hope Parents/caretakers, services & support agencies, as well as, individuals with Autism are not overwhelmed, confused or disheartened.

August 23, 2011 at 10:45 am
(71) TF says:

My problem with this sweeping change is children like my daughter are swopt under the umbrella when other physicians have clearly stated she is NOT autistic. Becaus eof her language delays, emotional delay, low endurance, etc they want her to be classified “profoundly autistic” yet she performs in the 100% percentile on all their cognitive testing. She just has exprassive language issues that developed after anesthesia at age 4. She has been dioagnosed with PTSD but the “autism specialist” said there is no such thing as PTSD in children therefore she is severely autistic.

The other issue is my daughter only has emotional episodes in 2 settings (medical and school) but not anywhere else. We can take the kid to the Disney Crowds and she loves it! She has a group of 9 very close friends she plays with and interacts with and shares secrets with. This is not something a severely autistic kid would do. She calls her friends on the phone asking them to come over.

The “autism” umbrella is used to avoid doing their job at times. No one has done an MRI or other testing to rule out a brain injury. Currently we are demanding further testing. If my daughter was autistic, I could deal with it. But who has heard of Autism coming on from a traumatic incident at age 4? Also, when a Physician tells me that “well, she was autistic from birth but no one ever noticed because she compensated well” I get skeptical. How many newborns have compensatory skills?

August 23, 2011 at 11:43 am
(72) Mary Cavanaugh says:

TF and anyone else who’s interested. I have an interview I feel all mom’s need to read. It is with Dr. Mercola and a British neurologist who had a child diagnosed with autism at the age of 3. When she found out no one in her field had any answers, she went back to school and studied nutrition. The article talks about her findings and how she healed her child. Once again detoxifying is a definite piece to this puzzle. If you want to read this article let me know. You will receive an understanding of what has happened with our children.

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