DSM-5: You’re Still Autistic. You’re Just Weird. You We’re Not Sure About....

DSM-5: You’re Still Autistic. You’re Just Weird. You We’re Not Sure About. Call Us Tomorrow.



Reports of autism cases per 1,000 children grew dramatically in the US from 1996 to 2007. Source: Wikipedia.

It’s hard to imagine more chaos in the world of autism than what we see happening right now.  Autism is more and more in the public spotlight.  The numbers are huge and no one can explain them.  Since 2009 we’ve been told that one percent of children have autism.  Among boys alone, it’s almost two percent.  Mainstream medicine can’t explain the stunning increase in a once rare disorder.  For years health officials gave doctors credit for all the autism everywhere.  They said it was the result of “greater awareness” and “better diagnosing.”  Children who were mislabeled as something else were now correctly called autistic.  The criteria for diagnosing autism was laid out in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and a child with symptoms would be placed somewhere on the autism spectrum, as it came to be known.  This included very high functioning autism and Asperger’s syndrome all the way over to the other end of the spectrum to those with severe intellectual impairment and all the signs of classic autism.

Between 2007 and 2009 the autism rate went from one in 150 to one in every 110 children and even health officials had to admit there was more going on here than just better diagnosing.  It looked like lots more kids really did have autism.  To address this, groups like Autism Speaks poured millions of dollars into studies looking for the gene/genes that cause autism—with no conclusive results.  Studies did turn to the environment, since if the explosion in autism was real, genes alone couldn’t possibly explain it.  We were regularly told about studies linking autism to older dads, older moms, siblings too close together, lack of vitamin D, living too close to a freeway, low birth weight, and the list continues to this day.  The one thing that officials continually denied was any link to the ever-expanding vaccine schedule.  After seeming to study the possible connection in depth, the agency that runs the vaccine program gave their vaccines a clean bill of health.  (And after delivering the coup de grace to the vaccine-autism link, the last head of the Centers for Disease Control, Dr. Julie Gerberding, became the head of the vaccine division at Merck.)

Meanwhile, autism became a real public health issue.  News stories about the number of affected children and the cost of educating and treating them were common.  Almost as an aside was the line, “Autism has no known cause.”  There was nothing doctors and health officials could actually tell us about autism except that we should look for signs of the disorder in babies and young children because early intervention led to the best outcome.  Officials didn’t seem concerned that no one was able to find a comparable rate of autism among adults.  Since many experts still adamantly claimed that there was no real increase, someone somewhere should have been eager to find the misdiagnosed/undiagnosed 40, 50, and 60 year olds out there with autism, especially those with classic autism whose symptoms are undeniable.  This was never done.

With more and more children being diagnosed with autism, more attention was given to the disorder.  Autism Speaks, the biggest advocacy group in the U.S., was started in 2005 and Congress set up the Interagency Autism Coordinating Committee in 2006.  It appeared that whatever could be done about autism would be done, with millions of dollars thrown into the mix.

The problem is that not much has been learned about this disorder in the last six or seven years, except that the numbers continue to grow and the controversial link to vaccines isn’t going away.  In fact, with growing concern over autism, more and more parents have stopped vaccinating.  Despite the endless promotion of vaccines as safe by people like Dr. Paul Offit, himself a vaccine developer, questions continue to be asked.  While the federal government has long claimed that the National Vaccine Injury Compensation Program has never paid out for vaccine damage that included autism, last year it was revealed that dozens of children with autism have received millions of dollars in compensation.    This followed the news in 2008 that Health and Human Services had conceded the case of Hannah Poling, the young Georgia girl who regressed into autism after being vaccinated.

Officials were under increasing pressure to come up with answers.  Why did so many parents claim that their children were born healthy and were developing normally until they suddenly lost learned skills and regressed into autism, often directly after receiving routine vaccines?  The one in 110 rate came out in 2009, but it was based on studies of children who turned eight years old back in 2006.  Those kids are teenagers now.  Why didn’t the CDC update the autism rate?

The Big News

With the ball clearly in their court, experts are finally doing something about autism.  Last week we learned that when the American Psychiatric Association puts out the DSM5 in 2013, the proposed revised definition will make autism into a whole new disorder.  Gone will be the wide spectrum of autism.  It seems that the proposed changes will eliminate many of those with mild autism, namely Pervasive Developmental Disorder, high functioning, and Aspergers as well those with severe intellectual disabilities.  Culling through the autism epidemic like this is guaranteed to dramatically reduce the numbers.  The news reports tell us parents already struggling to provide for their children are understandably concerned.  They need to know if their children will be suddenly cut off from critical services as shown in these reports.

New York Times (opens if you subscribe) Jan 20, A Specialists’ Debate on Autism Has Many Worried Observers

“A study reported on Thursday found that proposed revisions to the American Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S.”

“The proposed revisions, which would take effect in 2013, are likely to have practical implications for those who would once have qualified for services that experts say can improve an individual’s abilities to socialize, learn and ultimately live independently.

“‘We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,’ said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions.”

The Times made it clear that those working on the DSM changes weren’t stopping at just the high functioning.  “Catherine Lord, the director of the Institute for Brain Development at New York-Presbyterian Hospital, and a member of the committee overseeing the revisions, said that the goal was to ensure that autism was not used as a ‘fallback diagnosis’ for children whose primary trait might be, for instance, an intellectual disability or aggression’.”

On Jan 20, ABC News ran the story, New Autism Definition Could Exclude Many. ABC quoted Lori Warner, director of the Hope Center for Autism at Beaumont Children’s Hospital Center in Royal Oak, Mich., who said, ‘Really, in a lot of states, you need that diagnosis in order to have treatment covered. If you don’t have that diagnosis, you’re going to try to pay out of pocket or you have no access to these services.  It could be devastating for a lot of families.’ However, on one video, Dr. Robert Besser of ABC told parents that the change in the DSM is “a very good idea,” and he assured parents that if their child loses their diagnosis they’ll still get services based on need. “The good news is, before any change would go in the definition, we have time to address that problem.” Likewise on a CBS affiliate in North Carolina, a local doctor in Kinston told parents that their children would get help even if they’re not called autistic.  Dr. Susan Boutilier, who works with autistic children, said, ‘For the most part children and adults who receive services receive them because they need them not because they have a label, but based on their actual physical disabilities, their mental/emotional disabilities.’ The way around the loss of autism as a label is easy according to Boutilier, ‘There are other diagnoses that could be applied to them such as a learning disability, sometimes even a mild mental retardation that could be applied to some kids that would get them equal services without necessarily fitting the criteria for autism.’

Growing concern over the DSM5

So why exactly is the APA changing what we call autism?  How is this going to benefit children?

In the last 20 years, we’ve seen a 600 percent increase in a serious neurological disorder.  No one at the APA is able to tell us what causes autism, how to cure it, or how to prevent it, but they seem happy to again play with the definition.  We need to ask why this is happening.

The truth is, many people want the autism epidemic to somehow disappear and changing the definition is one way to do that. Duke University psychiatrist, Dr. Allen Frances just has a piece on Huffington Post he gave us ten reasons why there really hasn’t been an epidemic increase in “psychiatric illness” (i.e. neurological/developmental disorders) among our children.

Insurance companies are now legally required to cover autism therapy in over half of the states. Schools have to provide costly services when a student is autistic.  And we’re on the brink of a generation of autistic teens aging into adulthood where they’ll become dependent on the taxpayers for their support and care. All this looms over our country like a tsunami.  Thomas Insel head of the IACC has said that 80 percent of Americans with autism are under the age of 18. He warned that we’re going to have to prepare for a million adults “who may be in need of significant care.”

Temple Grandin, probably the most well-known figure with autism in the U.S., was on NPR Jan 20 with John Gilmore and NY Times reporter Benedict Carey talking about the DSM changes.

Grandin called it like it is. “I think one of the things that’s putting pressure on this is funding issues. There are laws on the books that children with autism get treatment. … “

NY Times reporter Benedict Carey: “The task force group thought, let’s try to clarify this picture. There’s no blood test for autism. There’s no blood test for any psychiatric diagnosis. These are judgment calls made by therapists. In recent years, the rate of diagnosis has been going up very quickly. I think there’s some concern there too. Not just for funding issues. Make sure we know what we have. Is this definition clear enough? I think that’s partly what the work group is trying to do is to be clearer about what defines this diagnosis. What is autism or autism spectrum and what is something else? A sort of social awkwardness-whatever you want to call it.”

Grandin: “I think is some ways they’ve made the definition less clear because originally for autism, you had to have speech delay. Now the whole speech delay thing is just kind of hazy where with Asperger’s you have the social aspects without the speech delay. I think a lot of the Asperger’s is going to be called Social Communication Disorder. I some ways I think they’re making it less clear.”

John Gilmore: “This is a really, really serious issue and the way I look at it, there are three main things you have to consider here. Probably the biggest burning issue with autism for the last 20 years is has the real rate of the number of people with autism been the same or has it been going up? By redefining autism you just eliminate the last 20 years of epidemiology to try and decide this issue. And this is a crucial, crucial question. Just in the last couple of years, there’s enough data, enough solid diagnostic work to give indications that yes indeed it really is going up. If we redefine it, we basically start from square one. That’s a huge problem.”

John then talked about having to RE-evaluate every person out there who currently has an autism diagnosis to see if they fit the new criteria. The result is going to be, according to John, that “tens of thousands of people are going to lose access to services in the educational program that they have and they’ll also lose access to their health insurance. We’re been fighting here in New York to get adequate insurance coverage for people with autism. And the key to that is that you meet the criteria.”

John admitted that his son might no longer qualify for services. “Anywhere from 50 to 70 percent of the people with an autism diagnosis also have an intellectual disability. Intellectual disability is completely removed from the criteria. The result of this is going to a huge chaos and I can’t see any tangible benefit for anybody in doing this. It’s also going to be eventually expensive. It costs about $3,000 in New York to have a full autism walkup.”

All this really means that the doctors who gave us “better diagnosing” were wrong.  Instead they were responsible for misdiagnosing and over-diagnosing.  We’re now told it’s time to change all that.  Experts are preparing to UN-diagnose a generation of disabled children.  The impact of this DSM change will be massive. If autism becomes a disability with a very narrow diagnostic criteria, gone will be the one in 110 rate and any updating of that statistic will have no relevance.  If they come up with lots of new names for the symptoms of high and low end kids on the autism spectrum (like “social and communication disorder” as reported by the NY Times), there wouldn’t be any reason to conduct a comparison study of vaccinated and unvaccinated children to see if never-vaccinated kids also have a one percent autism rate.

And the word autism wouldn’t be in the headlines like it is now.  But these children aren’t going away regardless of what we call them.  Stories about the devastating cost of special needs students will still be there.  Reports of abuse in our schools will keep coming out.  The demand for answers isn’t going to go away either   And there will also be lots of very angry parents who rightly feel that their children mean nothing to the medical establishment whose only aim is to make them disappear.

Anne Dachel is the media editor of Age of Autism where this post first appeared.

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95 Comments on "DSM-5: You’re Still Autistic. You’re Just Weird. You We’re Not Sure About. Call Us Tomorrow."


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Jan 27, 2012

Those warnings are based on reports of adverse events that occurred after the vaccine was given. I’m sure you understand the problem with assuming causality.

Jan 26, 2012

“Yes, people not only “suggest” but blatantly state that it doesn’t happen. I’ve had it said directly to me many many times.”

It? Can you be more specific?

Jan 26, 2012

How can I get more specific? You stated: “Nobody seriously suggests that vaccine injury never happens.” I am telling you that yes in fact it does happen, regularly, and has been said directly to me many times.

Most parents aren’t even aware of the hearing loss warnings printed right on the paperwork they are handed when their child gets an MMR vaccine. It is very sad how uninformed much of our population actually is. They think if the government is doing it, it must be safe. But there are risks to anything.

Jan 26, 2012

If you never saw the show, then how do you know the producers didn’t want a debate? Are you just assuming facts not in evidence?

Nobody seriously suggests that vaccine injury never happens. The point, one more time, is there is no known association between vaccines and autism.

Did you file a VAERS report?

Jan 26, 2012

My comments to you were about you acting as if that side of the argument is not well-represented, when it is. I never claimed to know what a TV show, producers or guests wanted (as you claim to know).

Yes, people not only “suggest” but blatantly state that it doesn’t happen. I’ve had it said directly to me many many times.

And “one more time” there is a known association between vaccines and autism. It’s silly to say it isn’t “known” when there are families getting compensation for it happening. It is “known”. It might not be “known” by you. But it is “known” by those of us whose children were injured.

I already answered your question about reporting.

Jan 26, 2012

AutismNewsBeat, I didn’t see the show that you speak of, so I can’t give an opinion on the show itself.

To answer your questions:
“Who doesn’t think your child exists?”
– Everyone that says that there are not children like her, who were 100% developmentally on target, or advanced, and then had an allergic/adverse reaction to vaccination and *immediately* had all of the symptoms that led to an autism diagnosis. That’s who.

“How am I not accepting your daughter?”
– I feel that those in the autism community who deny my daughter’s existence are not accepting of her. Those with the bitter attitude toward the vaccine injured, tend to say to us that either our child didn’t get sick the way that we know that they did, or they say “Well if your child does actually have these medical issues, it isn’t really autism, so you are not a part of this discussion.” Even though our children have the same symptoms as others with autism. That is what I mean. Most of what you have stated in your various comments sounded to me, like you are one of that crowd. If I am wrong in that, I apologize.

“We’ve never met, have we?”
Your name is not on your posts, so I have no idea who you are or if we’ve met.

“If you want an investigation into your child’s loss of skills, all you have to do is file a claim in vaccine court. Of course then you would have to make your child’s medical records available to the court. That ‘s not for everyone who makes the same claim as you.”
– I’m not sure what you mean by “that’s not for everyone who makes the same claim as you.” I’m not sure what you are saying there. All I can tell you is this, ever since October 2010 everything we have done as parents has been about helping our daughter. I have not considered filing a claim for a lawsuit. My thoughts have been about things like, “How can I get her to look at me again? Will I ever here MaMa again? How can I get her to eat properly again? How can I get her to chew food again? How can I make her happy again? How can I teach her new ways to communicate?” These are the things that are on my mind, every minute of every single day. And we’ve achieved some of those things, and we are fighting hard to get the rest back for her. I have not considered any lawsuit claim. Personally speaking I don’t think I have the energy to spare to put into something that (from what I’ve heard) is a waste of time most of the time anyway in a court that is from what I’ve heard, is mostly about denial. My focus is my daughter. I don’t have anything to hide in her medical records. We were told that her adverse reaction was reported. And I received a call from a supervisor with the health department who apologized for what happened to her, and said that she was reporting the incident as well. What happened after that on their end, I am not sure. As I said, my focus has been on my daughter and helping her – moving forward, not looking back to a past that I cannot change.

I would like to say that I DO see a difference between situations like my daughter’s and some of the others that claim to be vaccine injured. There are kids like my daughter who walked in fine, and literally left the room autistic. I think cases like that are very clear that their autism was triggered by their allergic/adverse vaccine reaction. However, it seems like many that are involved in the anti-vaccine movement, have a child with autism that developed symptoms over a long period of time and they are looking back and trying to find a reason, and they blame vaccines. They could very well be right. But, I think in those cases, they might be wrong too. There is no way, with the knowledge we have now, to know for sure. For me, as a parent whose child had an immediate and severe reaction (swelling of her face, inability to stand, inability to eat solid food, lack of eye contact, loss of all verbal skills) that happened *immediately* and in my opinion is not the same thing as trying to look back months or years later and find a cause.

I wish that people could be more open-minded. So that we could study cases like hers and find out what is going wrong. I truly believe that it could be beneficial for all children in the long run. But saying it doesn’t happen, does nothing to help anyone.

Jan 26, 2012

I agree that the bulk of Anne’s argument rests on her interpretation of the Wikipedia graph. That is why it’s important to understand what it really shows.

IDEA data only show reported diagnoses, and the rate differs by state and even by regions within states. Also, autism only became reportable less than 20 years ago.

A more telling graph shows the growth of all disability labels under IDEA during the same period. Between 1998 and 2008, the number of children 3-21 served by IDEA grew by only 10 percent.


Happy to move to conversation forward.

Jan 26, 2012

Great post, Anne! The take-home point from your article lies in the graph. It’s not linear, folks. What does that mean? It can be described by an exponential! The autism and ASD growth rate is growing exponentially. This is unsustainable!

I am not anti-vaccine. I am, however, strongly for medical freedom. I strongly oppose vaccine mandates. U.S. Rep Ron Paul MD opposes vaccine mandates and favors medical freedom and personal liberty. This is a moderate, well-reasoned position. He deserves our strong support. Undecideds in both parties should support him.

Jan 25, 2012

Anne, your Wikipedia graph represents IDEA data.

That’s not how we determine autism incidence. You knew that already, right?

Jan 25, 2012

There is no link between vaccines and autism. The most renowned proponent of that crackpot theory, Andrew Wakefield, recently was stripped of his medical license for hoaxing his results.

What’s next – an article supposedly about mesothelioma that turns out to be written by a 9/11Truther?

Jan 25, 2012

The Health Care Blog got seriously played by the anti-vaccine people. It happens, but not nearly as much these day as it used to. Even 60 Minutes, usually no friend of shysters and thieves, aired a sympathetic story about Wakefield once. That was about 10 years ago. That could never happen in 2012, except maybe on Fox News.

Jan 25, 2012

“TTT” tell that to someone that watched their child have a life threatening allergic/adverse reaction to a set of vaccinations and then suddenly (within 15 minutes) the child that was perfectly “typical”, on-target developmentally, and got up that morning smiling, laughing, dancing with me, and telling me “I love you Momma!” could no longer look at me, could no longer speak, could not walk properly, could no longer chew food, could no longer participate in communication in any form other than to cry when hungry. This all happened within 15 minutes! I am not anti-vaccine. I do not think all autism is triggered by vaccines. But I am 100% certain that my daughter’s autism was triggered by her allergic/adverse reaction that day, I watched it happen within minutes, as did my husband who is a medical professional. You can say those things all day long, but we are here. People like my beautiful little girl DO exist, and we are out here fighting to recover what they lost every single day of our lives.

Jan 25, 2012

Medical health advice
For those who argue that the topic of vaccines is irrelevant to this issue, I would beg to differ. For the past several decades, vaccine-induced encephalitis and its subsequent physical and mental/intellectual symptoms have been diagnosed as autism. When parents take their children in for vaccinations, there is a tacit understanding that, should their child suffer an adverse reaction and sustain brain injuries, society will still provide the free and appropriate education which is entitled to each and every child.

Jan 25, 2012

The reason is human gamma retroviruses. Specially they are retroviruses that have originated in mice.

These viruses are hormone responsive and cause the same diseases in mice. The hypothesis is that a child is infected from birth, or becomes infected very early on and then they have an immune assault, say a vaccine, that reactivates the viruses and the child gets sick. The viruses are linked to prostate cancer and ME too. People with ME do appear to have a higher risk of having children with autism and many have noticed the similarities of these diseases to one another.

Jan 24, 2012

The revisions in the DSM will inflict one more injustice to a very large group of kids who have suffered enough. Anne, thanks for focusing such a bright light on this issue.

LJ Goes
Jan 24, 2012

Helen, I’m sorry, I meant to link http://www.smartvax.com my apologies

Jan 24, 2012

I was recently starting to sense that doctors were understanding the diagnostic criteria for autism & aspergers. Finally. But, the kids with a diagnosis of aspergers are not getting it until they are in 4th or 5th grade. Lately, I was starting to meet families with a diagnosis of aspergers with much younger children which I thought was incredibly hopeful for those families. Now we will go back to thinking these kids are behavior problems and the kids themselves will spend much time wondering why they are the way they are. I meet people who found great comfort in the diagnosis so that it could explain their uniqueness. I think the change is very very unfortunate.

Jan 24, 2012

@Grant; those “major” genetic studies have sucked a lot of research dollars but generally are in conflict with each other, each one finding a particular genetic marker that accounts for a small sliver of autism but none of them replicating each other. It is possible that this will change when/if the geneticists begin to look at the gene expressions with regard to immune function and how the body’s metabolic pathways function. It is not beyond reason that the 1-2% (or greater) of the population being diagnosed with autism represents normal genetic haplotypes which are for some reason more vulnerable to neurotoxic insults.

The most recent “big” study found that environment plays a much larger role than genetics:
A rigorous study of nearly 400 twins has shown that environmental factors have been underestimated, and genetics overestimated, for their roles in autism-spectrum disorders.

The study found that the children’s environment represents more than half of the susceptibility — 55 percent in the most severe form of autism and 58 percent in the broad spectrum of the disorder — while genetics is involved in 37 percent and 38 percent of the risk, respectively.

This is the largest and most rigorous twin study to date to research the genetic component of the disorder, and tapped expertise from the UCSF Institute for Human Genetics and Stanford University — which jointly led the research — as well as from Kaiser Permanente, UC Davis, the Autism Genetic Research Exchange and the California Department of Public Health.

“Autism had been thought to be the most heritable of all neurodevelopmental disorders, with a few small twin studies suggesting a 90 percent link,” said UCSF geneticist Neil Risch, PhD, director of the UCSF Institute for Human Genetics and senior author of the paper. “It turns out the genetic component still plays an important role, but in our study, it was overshadowed by the environmental factors shared by twins.”

Findings appear in the July 2011 issue of the Archives of General Psychiatry.

“Our work suggests that the role of environmental factors has been underestimated,” said Joachim Hallmayer, MD, first author of the paper and an associate professor of psychiatry and behavioral sciences at Stanford University.

What exactly those environmental factors are, Hallmayer said, is the “multimillion dollar question,” but he noted that the disorder’s manifestation in very young children indicates a cause early in life and possibly during pregnancy.

Mar 18, 2012

The flurry of comments a week or two ago rather belatedly alerted me to your comment. Regards your opening remark has (excuse the brevity, I have very limited time, sorry I haven’t time for the rest of what you’ve written):

– the generally results don’t *conflict* with one-another in the sense of one *opposing* the others, they just don’t point at one single or small group of genes.
– Disorders that are common often (typically) involve many genes, which is what seems to be the case for autism; this isn’t especially surprising.
– When taken together they point at genes associated with neuronal (nerve cell) activity.

You might wish to read, for example:


The author’s summary reads:

“Autism spectrum disorders (ASD) are neurodevelopmental syndromes with a strong genetic basis, but are influenced by many different genes. Recent studies have identified multiple genetic risk factors, including rare mutations and genetic variations common in the population. To identify possible connections between different genetic risk factors, we constructed a network based on the expression pattern of genes across different brain areas. We identified groups of genes that are expressed in a similar pattern across the brain, suggesting that they are involved in the same processes or types of cells. We found that the genetic risk factors were enriched in specific groups of connected genes. Of these, the strongest enrichment was discovered in a group of neuronal genes that are involved in processes of learning and memory, and are highly expressed during infancy. Further study of this group of genes has the potential to reveal a more detailed picture of the neuronal mechanisms leading to ASD and to provide knowledge required for developing diagnostic tools and effective therapies.”