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.

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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.

Leave a Reply

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


Guest
steve
Jan 23, 2012

Oh God, an anti-vaxxer. What next? Could you round up a scientologist to come post about mental health care? Maybe we could expand past medicine and bring in a flat earther?

Steve

Guest
Carly
Jan 24, 2012

Do you have a specific criticism of what she says here? Show us where she’s wrong, otherwise your comment is just poo slinging.

Guest
Jan 25, 2012

I’ll accept that challenge.

Dachel’s Wikipedia graph is not evidence of an autism epidemic. It shows IDEA data. An epidemic is defined by an increase in incidence, but administrative data show trends in prevalence. So Dachel is intentionally misleading the The Health Care Blog gatekeepers by posting the graph.

Does that count as a “specific criticism?” Because there’s lots more.

Guest
Carly
Jan 26, 2012

Yes, that counts. Without speculating as to anyone’s intentions, or defending Dachel or you, yours is a point that can move the conversation forward.

Guest
Jan 26, 2012

I’m sure that will happen real soon.

Guest
Victor Pavlovic
Jan 24, 2012

Steve, I believe your head is flat as well.

Guest
Carly
Jan 26, 2012

Not helpful.

Guest
TK
Jan 24, 2012

Steve,

I meant to respond to you…so am cutting and pasting my response again, in-line.

Whether you think vaccines are involved in the increase of autism is a minor point. The point is that by adopting the DSM5 definition, many children will effectively be erased and no longer have autism. It is criminal to do so, as it erases the fastest growing portion of this population, according to CDC’s numbers. When erased, these children/adults could fall between the cracks of our DD system and not get appropriate services.

Changing the definition will not change that there are individuals with needs that will potentially be cut from services. It will also serve to make this a much less urgent problem in need of solving. The current definition, while not perfect, at least is more inclusive of the different degrees of autism that exist…it really is a spectrum.

IF change is really needed in this definition, then there should be a lot more investigation on what happens to those that will no longer meet the criteria and how they will be served, instead of a wait and see attitude. The unintended consequences will unfold, people hurt and set back and it could be avoided. It is unethical to allow these unintended consequences to become a reality – you are talking about a very vulnerable population that rarely is able to advocate for themselves and they deserve better.

My daughter would not have gone to college or gotten a job without the services provided to her over her lifetime. She is a PDD/NOS kid and is contributing back to society. If you cut these kids out, future generations similarly affected will not enjoy that success and become burdens on society in one form or another. This change will not interrupt the established growth of PDD/NOS kids, it will just cut them from surveillance studies conducted by CDC and we will no longer know how fast this population is growing, or anticipate the costs of serving them.

It doesn’t make any fiscal sense to change the definition. Additionally, I do not see why APA is making the change in the first place. I visited their site and compared the 4 to 5 version. It looks like they just took an axe to the definition and cut this population down without speaking to what it means or where those who no longer fit into the new definition belong. And yet this cut off population will continue to have significant developmental deficits and need services to integrate into and be productive individuals in our society.

Sticking our heads in the sand and sweeping this population of people under the rug is like throwing a blanket over the elephant in your living room and saying “There, now we don’t have to look at this anymore!” and going about your business walking around the lump and pretending it doesn’t exist.

Guest
Julie
Jan 24, 2012

I have one of those kids who may lose their diagnosis. My daughter has Down syndrome and Autism. She is one of those with MR, which is not in the criteria. They may then reduce her diagnosis to just Down Syndrome. Well let me tell you, my daughter is not like other people with Down Syndrome. When I go to different disability groups, she is more like the kids with Autism than DS. But because of her cognitive delays, she will relegated to the DS only category. Now she will be lucky in that she qualifies regardless of diagnosis for assistance in school. However she will not qualify for the extra funding through insurance that our state requires for Autism. She is getting RDI therapy because of that mandate. Without it, they will not cover it and she will be stuck with only the traditional therapies that have frankly done nothing for her. And as it is, we are paying out of pocket for so many things that should be covered for her. Losing this will make it that much worse. Anywhere from 10-18% of people with Down Syndrome also have Autism. Are you willing to have that population lose funding that would allow them to function? If we lose that help, there are going to be a lot of disabled, possibly homeless people out on that street. At least with the funding, they have a chance. Without it, they are screwed.

Guest
steve
Jan 24, 2012

TK- Minus the vaccine comments, I agree with much of this. My son is an Aspie. I know the literature pretty well. My wife knows it better.

Steve

Guest
Helen
Jan 24, 2012

Can anyone point me to international studies on autism? (e.g., have other countries seen a dramatic increase in autism over the past 20 years as the US has and if so/not, explanations as to why).

Guest
Julie
Jan 24, 2012

There are, and I think the UK has an even worse rate than ours. You may have to do a Google search because I don’t have the info at hand.

Guest
LJ Goes
Jan 24, 2012

Helen, There are several studies. Please go to http://www.safevax.com Steve, it is generally assumed when people comment on this blog that a discussion about science will ensue. Incendiary language such as yours does not invite intellectual debate. Please only offer science so a responsible and respectful discourse can take place. Best, lj goes

Guest
steve
Jan 24, 2012

Absolutely. That is why I hope we can avoid the anti-vaxxers. I have no desire to deal with pseudo-science.

Steve

Guest
Carly
Jan 26, 2012

Sorry, Steve you’re not going to be able to avoid the “anti-vaxxers,” because they have as much right to be in this conversation as you do. I’d suggest you make an argument. I personally feel these issues are important and deserve to be treated seriously.

Guest
Jan 26, 2012

Right, because whenever one frames a solid, evidence-argument against vaccine rejectionism, it is always countered in a similar fashion.

Guest
Wayne Rohde
Feb 1, 2012

AutismNewsBeat. Is that you Ken Reibel? Are you still under the payroll of the AAP?

Guest
Feb 1, 2012

Wayne Rohde,

I’ll leave this back’n’forth to you two (it’s not my style!) but I can’t help noticing you seem to be focusing on attacking people, rather than what the science says.

Opinions of people don’t matter much in scientific issues – it’s what the research shows (or doesn’t) or any flaws in the research, etc., that matter.

You write as if “criticizing some research that has been peer-reviewed” (your words) is unusual. It’s not – that is the *usual* thing.

Scientific papers when published are not ‘final’, but an argument for a case, that researchers interested in that area of science will consider. If they think it has flaws, they’ll say so.

Peer review for publication does not mean the research is ‘right’, but that it has meet some basic standards that reflect the particular research journal it is published in. (Smaller journals are often more lax than the big-name publications. Occasionally peer-review will slip up; in that you might find remarks to the effect that the paper should not have been published.)

Guest
Feb 1, 2012

I’ve never been on the AAP’s payroll. Why do you ask?

Guest
Wayne Rohde
Feb 1, 2012

Just wanting to get my facts straight. We will have to disagree with vaccine causation but we can still have an open discussion about this. I was reading some of your comments about the so-called “antivaxers” who do not want to have a discussion.
Recently, Paul Offit and Seth Mnookin have been hiding behind event organizers or calling peer-reviewed papers that disagree with their viewpoint as dangerous or calling people stalkers. Several of us have been guests on radio and local TV programs with the original intent of having a back and forht discussion with another person that represents the medical community. But they are cancelling because they do not want to be included in a balanced debate. Just want to have a one-sided biased program. This is the case in Los Angeles, Minneapolis, Boston, Chicago, and Atlanta recently.

Guest
Wayne Rohde
Feb 1, 2012

Ken, here is the article of Dr. Paul Offit criticizing some research that has been peer-reviewed. So much for open and honest debate for the Pro-Vaccine crowd.
http://www.vancourier.com/Responses+vaccine+paper+problem+free+scientific+inquiry+expression/6073466/story.html#ixzz1kygFVrof

Guest
Mar 7, 2012

I thought the whole show was very connusifg and borderline hysterical (as in out of control, not funny ). Audience members were shouting over the doctors. Dr. Oz said that on one hand, there is NO evidence vaccines cause autism, but on the other hand, he chose to space his kids’ vaccinations (wild applause from the audience), but of course, if you’re too busy or dumb to figure out an alternative vax schedule, you can just follow the AAP schedule. What??! My mother is a speech pathologist at a major university with more than 35 years of experience. She did her Masters Degree on autism and has worked with hundreds of autistic children and adults. She doesn’t think there is a link between vaccines and autism. I think the show did a huge disservice to parents.VA:F [1.9.10_1130]please wait…

Guest
Mar 7, 2012

Kazuki, I understand where your mother is coming from. My husband is a nurse and we never gave much thought to the vaccine/autism link either. Until we walked in with a perfectly healthy child, who was on target or advanced on every developmental milestone and was talking up a storm. And within 15 minutes of her vaccine, she had a severe reaction, her whole face swelling up, high fever, and a long list of other symptoms and within that 15 minutes all of her speech was gone. She also lost the ability to chew food. And she had all of the signs of autism. All of them. Within 15 minutes. Trust me when I tell you that an experience like that would change your mother’s mind too. I pray no one experiences it, but it does happen in some cases. It really does. Over a year of hard work and therapy later my daughter still cannot speak like she could right before those vaccinations.

Guest
Mar 8, 2012

Did you file an claim in vaccine court?

Guest
Jan 25, 2012

The anti-vaccine movement does very little to “invite intellectual debate.” The website for Jenny McCarthy’s Generation Rescue, for example, routinely excludes comments it does not agree with. Anne Dachel is “media editor” for that same website. Reporters are expelled every year from AutismOne, a major anti-vaccine conference held in the Chicago area. When McCarthy appeared on The Doctors two years ago, it was with the condition that the AAP not be allowed to bring on one of its representatives. And on and on and on.

Steve is right – somebody at The Health Care Blog messed up. It’s embarrassing, but it probably won’t happen again. ; – )

Guest
Carly
Jan 26, 2012

“The anti-vaccine movement does very little to invite ‘intellectual debate.'”

So what? Even if everything you’re saying here is true, how would that make it right for others to behave the same way?

Guest
Jan 26, 2012

If these issues are “important and deserve to be treated seriously”, then why not allow free and open discussion? Why delete reasonable comments at AgeOfAutism.com? Why expel a Chicago Tribune reporter from AutismOne? Why not allow the AAP to send a rep to The Doctors TV show when Jenny McCarthy was allowed on?

Why post misleading graphs?

Guest
Jan 26, 2012

“AutismNewsBeat”, Perhaps they were trying to have a TV show, not a debate. It’s not as if those that say my child does not exist don’t get PLENTY of press. It’s children like my daughter that are ignored, not the other way around. I’m not defending those that are anti-vaccine, and I am not anti-vaccine. But I am frustrated by people like you who should be accepting of children like my daughter, because we are a part of your community, being in the crowd telling us our children don’t exist.

Regardless of how our individual children got here, we are all here. And there is no reason to attack each other or pretend like some don’t exist, because your child didn’t get here the same way.

It seems to me that it is you that is afraid of real discussion about this issue. They need to open a real study on children like my daughter who had an immediate reaction to vaccines and an *immediate* loss of skills, and find out why, instead of saying we don’t exist. That could possibly make vaccines safer for all children.

Guest
Jan 26, 2012

I watched that show. There was a debate between the TV doctors and the anti-vaccine guests. The point is the show’s producers would have been happy to have let the AAP on, but then McCarthy would have cancelled.

It’s against my better judgement but I’ll ask: Who doesn’t think your child exists? How am I not accepting your daughter? We’ve never met, have we?

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.

Guest
Carly
Jan 26, 2012

I couldn’t agree more. I’m just saying that one group doing things that shut down the conversation, whether it be censoring or calling names, doesn’t imply permission or even necessity for people who disagree with that group to do the same. (And I’ve also heard stories about censoring on pro-vax blogs, people being expelled from an AAP convention…the accusations from both sides are endless and constant.)

And we absolutely should point out when people are making false statements or censoring. I just feel the issues surrounding autism are muddied enough (which is part of the reason people are so upset about the proposed DSM changes, which, whether justified or not, will complicate the picture, at least for a while). Precisely for that reason, we all ought to be really careful how we approach the debate. Otherwise, we end up with “camps” who will never believe anything other “camps” say, no matter how true it may be. That is an extraordinarily dangerous situation, and we need to do better than that by our children.

Guest
Carly
Jan 26, 2012

Somehow in the way things got posted, it looks as if my last comment is directed at Debbie. I hadn’t read her post when I wrote that comment. It was directed at AutismNewsBeat.

Guest
Wayne Rohde
Feb 1, 2012

Ken, let me correct you. You were asked to leave the conference by the organizer because of your actions to trying to secretly record a conversation with the father of a child with autism that won a case in the Vaccine Court?

The conference is not an ant-vaccine conference. It is a conference about autism, quality treatments for behavioral therapy, bio medical treatments for the underlying medical conditions such as inflammed gut, suppressed immune systems.

Guest
Feb 2, 2012

Your version of events, which I’ve heard before, is contradicted by some inconvenient truths. First, the conference organizers granted me media privileges for the 2008 conference. I arrived on Thursday morning, video camera in hand, and filmed all day and the next. I made no “secret” of the video camera, and in 2008 there was no policy against videotaping. I wasn’t alone – I saw dozens of parents filming. On Saturday I attended a Q&A with Jon Poling. During that session I asked a question. I was polite and respectful, and the question was reasonable. Five mins later I was surrounded by hotel security. The conference organizer, Teri Poling, said I was not registered. I was. She asked me to leave the hotel, but promised to check the computer registration files for me name. If I was registered, she assured me, then she would call me on my cell phone and I could come back. Of course the call never came.

I still have the confirming email from Ed Arranga, sent to me months earlier, saying I was cleared to attend as media.

Like I said, the anti-vaccine movement does little to encourage free and honest discussion. It’s almost cult-like, wouldn’t you say?

But all that is an aside, because I was referring to other reporters who had been kicked out of AutOne. A Chicago Tribune reporter was ejected in 2009 because organizers didn’t like what she had written about Boyd Haley, a chemist who repurposed an industrial chelating agent as a diet supplement for autistic children. In 2010 organizers ejected a Chicago filmmaker who had paid his entrance fee, and didn’t even have a camera on him. In 2011, another Chicago Tribune reporter was escorted out by police soon after he arrived at the conference, and checked in with conference organizers. Nothing secretive about that.

Guest
Wayne Rohde
Feb 2, 2012

Ken. Talk about in excluding inconvenient truths. Just take a look at what Paul Offit has been doing in public discussions. He will not entertain opposing questions. He calls those who ask questions, stalkers and asks the event organizers to remove those people from the event instead of facing scrutiny.

Guest
Feb 2, 2012

Stay on topic, Wayne. You made a blatantly false accusation that I “secretly recorded” a conversation with an autism parent. Electronic eavesdropping is a felony in Illinois, so that’s a pretty serious lie you just told. I presented you with verifiable facts, and you responded by … changing the subject?

Guest
Sunny
Jan 24, 2012

Great post, Anne.

Thanks for giving a voice to other parents of affected children!

How is it that most people can’t GET that injecting heavy metals & toxins into infants can harm them so severely? Break a florescent bulb in a big box hardware store and they will dispose of it as ‘hazardous materials’?

We’re lucky that we found the solution here. After two years of heavy metal removal with chelation, we no longer have ‘autism’ here. We have a normal boy!

Keep up the good work!

Guest
TR
Jan 24, 2012

lol @ scientologists and antivaxers…. thats a new one and very pertinent to this article /sarcasm

Guest
Maurine Meleck
Jan 24, 2012

Anne, thank you for this brilliant synopsis of what is going on with the autism controversy. I more than suspect that the naysayers here do not have a child with autism and therefore do not understand that it is not a mental disorder, but a metabolic disorder, affecting every organ in the body. Our children suffer from such things as oxidative stress, immune dysfunction, inflammatory bowel disease, encephalopathy. Autism never should have been placed in the DSM in the first place. It needs to be taken out now, before the new DSM comes out. Most psychiatrists, pediatricians, health officials etc have no idea what autism really is. The problem is that it’s to their advantage that they keep it in the DSM. All the major drug companies have ties to them as do insurance companies and politicians. For them, it’s power and money that trumps our sick children. And don’t let me forget how important it is to keep the vaccine program in high gear for eternity, since many of us believe our children were vaccine injured before autism. We, the autism community, must work together to fight those that consider our children less important than anyone else.
Maurine Meleck SC
grandmother to 2 vaccine injured boys, one recovered from bio-med treatments.

Guest
Jan 25, 2012

This naysayer has a 16-year-old son with autistic disorder. ; – )

Guest
TK
Jan 24, 2012

Whether you think vaccines are involved in the increase of autism is a minor point. The point is that by adopting the DSM5 definition, many children will effectively be erased and no longer have autism. It is criminal to do so, as it erases the fastest growing portion of this population, according to CDC’s numbers. When erased, these children/adults could fall between the cracks of our DD system and not get appropriate services.

Changing the definition will not change that there are individuals with needs that will potentially be cut from services. It will also serve to make this a much less urgent problem in need of solving. The current definition, while not perfect, at least is more inclusive of the different degrees of autism that exist…it really is a spectrum.

IF change is really needed in this definition, then there should be a lot more investigation on what happens to those that will no longer meet the criteria and how they will be served, instead of a wait and see attitude. The unintended consequences will unfold, people hurt and set back could be avoided. It is unethical to allow these unintended consequences to become a reality – you are talking about a very vulnerable population that rarely is able to advocate for themselves and they deserve better.

My daughter would not have gone to college or gotten a job without the services provided to her over her lifetime. She is a PDD/NOS kid and is contributing back to society. If you cut these kids out, future generations similarly affected will not enjoy that success and become burdens on society in one form or another. This change will not interrupt the established growth of PDD/NOS kids, it will just cut them from surveillance studies conducted by CDC and we will no longer know how fast this population is growing, or anticipate the costs of serving them.

It doesn’t make any fiscal sense to change the definition. Additionally, I do not see why APA is making the change in the first place. I visited their site and compared the 4 to 5 version. It looks like they just took an axe to the definition and cut this population down without speaking to what it means or where those who no longer fit into the new definition belong. And yet this cut off population will continue to have significant developmental deficits and need services to integrate into and be productive individuals in our society.

Sticking our heads in the sand and sweeping this population of people under the rug is like throwing a blanket over the elephant in your living room and saying “There, now we don’t have to look at this anymore!” and going about your business walking around the lump and pretending it doesn’t exist.

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Maurine Meleck
Jan 24, 2012

Except that vaccines is one of the reasons for the change, IMHO. Fewer children with autism, no incrrease, no need to find cause and cure, no need for the vax vs unvaxed study, no need to make them safe etc.
Maurine Meleck

Guest
TK
Jan 24, 2012

Actually, I am not disputing that they are, or are not. I am saying that the unintended consequences of adopting the APA changes must be identified in advance and avoided to assure the services currently enjoyed by those meeting the DSM4 criteria, and that will not meet the DSM5 criteria, will continue.

I think we agree that we should not let those receiving services fall through the cracks – yes? These are human beings, not numbers we are talking about. They have real needs and I would like to know how these needs will continue to be met if this new definition is adopted. The new definition will not erase the need.

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Maurine Meleck
Jan 24, 2012

TK-I agree with you completely. The bigger issue is that children on the spectrum must continue with their services and those new to the spectrum must get them too. We are definitely in the same book. Thanks.

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Garbosmed
Jan 24, 2012

When parents were the ones footing the bill for expen$ive treatments for their sick children, everyone was more than happy to have an expansive definition for diagnosis. Now that insurance mandates passed in many states mean that insurance companies will have to cover those treatments, and now that the numbers of affected children are so large that fiscally-challenged school systems are drowning in special needs students and their costs, suddenly there is an impetus for “better diagnosis” that will administratively erase great numbers of these children from coverage under insurance, educational and social service law. This is corporate medicine, attempting to forestall the inevitable consequences of their shocking inaction over the last ten years by creating confusion for the next ten years. If something drastic isn’t done by the powers that be to cover for their mistakes, the tidal wave of these children and the attendant public costs will cause every citizen to wake up and ask what has made a generation of children so very sick and why hasn’t anyone done anything about it besides argue about definitions. The DSMV is a transparent and craven attempt to fracture the autism spectrum into bite-sized bits and then let the epidemiologists chew them for the next decade while they all shrug their shoulders and say it’s a big puzzle. They ought to be ashamed of themselves. Truly.

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KL
Jan 24, 2012

I wonder if my son will get a certificate of achievement or something…after all, he all of a sudden won’t be autistic anymore in 2013! On second thought, maybe after they cut his services he’ll regress – and he’ll be rewarded with a label all over again.

Guest
Jan 24, 2012

I’m rather puzzled by this statement in the article: “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.”

I can’t speak for the medical side of autism but I am aware of quite a number of major genetics studies that have been published over this period. This would suggest that the author is not familiar with research in the area. Certainly she is not speaking for it accurately.

As for the vaccine-autism link, perhaps the author might support her claim that this isn’t going away with the results of a survey? On the same level backing as she offers, i.e. anecdote only, my experience is that this is now considerably less convincingly expressed, and expressed by fewer.

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Julie
Jan 24, 2012

There was a Senate Committee hearing about the Environment and Children’s health back in 2010, Aug. I believe. The government officials were told by the scientists heading the committees that the increase was real and had a large environmental component. You may have to google this, but it is there. The government admits this, that it is largely environmental in nature and that the increase is real. There are certainly genetic components to it, but it is not genetic like Down Syndrome is. You many have an SNP that causes poor methylation, and you may pass that down to your child. But when a child is developing normally and then regresses at a certain point in time, that is not genetic. Something triggered that change. That is what has been to “genetics is the gun, environment is the trigger.” And with the toxins in our environment, most of us are probably slowly having genetic mutations take place and then passing those down to our kids. It makes sense, and a lot of toxins have been entering our environment, especially around the 1970’s and on. I don’t understand why this is so controversial. It just makes sense. There is no such thing as a genetic epidemic in the course of one generation. Something has caused it, and environment is the only thing that makes sense. It’s just not as glamorous as genetics, so nobody wants to go there.

Guest
Jan 27, 2012

Julie,

Allow explain why what your have written is inaccurate.

“the increase is real” – does not say what is the cause of the increase, just says the counts are higher. The cause of higher counts can be a shift in diagnosis as others have pointed out. There are indications that this is dominant reason.

“a large environmental component” – this is exaggeration. There is an environmental element, but it is quite a bit smaller than the genetic component. That there is an environmental component does not ‘take away’ or ‘replace’ the genetic component.

“that it is largely environmental in nature” – this is not correct.

“But when a child is developing normally and then regresses at a certain point in time, that is not genetic.” There are quite a few genetic disorders, even ones that are entirely genetic, that don’t start until later in life. One reason is that some genes are not used until later in life. Autism, by contrast, starts very young. There are some indications it may be prenatal.

“That is what has been to “genetics is the gun, environment is the trigger.”” – this is not the only way ‘environmental’ effects can interact with genetics. Note, by the way, what you are describing is where the genetics is the underlying cause; in this situation people without the genetic difference never get the disease. This model is over-played by advocates for some causes to try ‘shift the blame’ to environmental effects such as toxins.

“And with the toxins in our environment, most of us are probably slowly having genetic mutations take place and then passing those down to our kids.” – in order to pass down a mutation to your children, a toxin would have to cause a mutation in your germ cells (eggs/sperm). This would be unlikely (we all experience mutations, even in ‘normal’ life, but our germ cell are protected from most things) and I would think fairly easy to identify it were the case.

(A different issue is so-called de-novo mutations, perhaps related to having children at an older age.)

“There is no such thing as a genetic epidemic in the course of one generation.” – correct. (With a few technical exceptions we can ignore.)

“Something has caused it, and environment is the only thing that makes sense.” – it’s not the only possible cause, a shift in diagnosis is another.

“It’s just not as glamorous as genetics.” – a shift in diagnosis isn’t very glamorous either. The reason some researchers look at genetics is that for them this is where the evidence has lead.

Guest
Jan 27, 2012

Should add, for ‘shift in diagnosis’ you can also add ‘increased awareness leading to increased diagnosis’.

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Autismnewsbeat
Jan 27, 2012

Thank you, Grant, for moving the conversation forward. Children are better served by facts than fallacies.

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Wayne Rohde
Feb 1, 2012

Grant. Sorry to pop in at this segment of the thread but there was no other place to reply to your comment.

As far as attacking people, we will continue to do so where they continue to spread untruths or misrepresent the facts. I will do so for both sides of the debate.

As far as science is concerned. You take that word like it is gospel. Science is not exact nor is it correct a lot of them time. Take for example the quotes from those who say there is no link to autism with vaccines. The truth is that we really do not know. But you have those who say there are studies that prove there is no link. Yet each of the “so called 14” studies have all been discredited due to poor design, lack of controls, too small of a sample, etc.
Science is evolving. What many of us who do know of vaccine injuries is that vaccines are not safe for all. There are many and depending on the vaccine, large subgroups that should not be expose to a certain vaccine. As recent evidence, Merck is now having to answer for why they did not inform of large subgroup of girls that should not recieve the Gardasil vaccine because of underlying medical conditions.
And for those medical doctors who enjoy complete immunity for any vaccine administered, stop with the chatter that any serious reaction is just a coincidence. Perfect healthy boy receives the MMR at 13 months and 1 week later starts developing major seizures. And there was no history of seizures with the boy or the family. Please spare me.

Guest
Feb 2, 2012

Wayne,

I think you miss the point about attacking others – no-one will really stop you but! – doing that won’t help you or your cause. Scientific matters are resolved over the science, not pointing fingers, making accusations, misrepresenting others and so on. (You’ve done a little of this to me in your reply above – I’ve no interest in replying in kind, as I indicated earlier. It’s just not helpful.)

“You take that word like it is gospel.” – the comment you are replying to made it clear that I consider criticism of research part of normal practice.

“The truth is that we really do not know.” The truth is a large number of studies have been done to test if there is a link and have found no clear link. If there is a link it is either very weak or occurs only in a small subset of people with autism.

Regards the seizure issue, two points.

Firstly, that one event occurs before another does not, in itself, mean the first caused the latter. (One of the reasons controlled studies are needed is that they try to eliminate (control for) alternative causes and thus test if a link exists for one particular cause. Anecdotes by contrast are open to all possible causes and are unable to distinguish which of them might be the actual cause.)

Secondly, you might want to read about Dravet Syndrome and other causes of early childhood seizures. (I have been hoping to write about Dravet Syndrome, but have not yet found time to cover the research literature I want to read first.)

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Wayne Rohde
Feb 2, 2012

Grant. Good grief. Get a life and stop being so high and mighty with everyone.

Guest
Mar 8, 2012

When you’re scraping bottom, everything looks high and mighty.

Guest
Mar 8, 2012

Wayne’s celebration over the “vindication” of Mr.Wakefield is not well founded. The UK judge concluded that Walker-Smith didn’t deserve to have his reputation ruined just because he was bamboozled by Wakefield. If Wayne could stop being St. Andy’s fan boy for two seconds, he would understand that the judge’s decision actually makes it less likely that Wakefield can win on appeal. Walker-Smith was given a second chance because he was a good doctor who let Wakefield fool him. How does this make Wakefield any less culpable?

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Wayne
Mar 8, 2012

Ken. You are so misinformed of the actual decision of JWS.

But most Pharma nazis are.

Your opinion is your opinion, read the decision. Then think about it the next time your paycheck comes in from Pharma.

Guest
Mar 8, 2012

Said the man who wants to get his facts straight.

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Wayne
Mar 8, 2012

Your reply tells me that you did not actually read the decision. So you commented on the decision with your own biased thoughts.

So tired of your boring commentary.

Guest
Jan 24, 2012

My youngest is one of the “vaccine injured”. In October of 2010 we took our perfectly healthy and “typical” little girl in for vaccines. Within 15 minutes her entire life had changed. I don’t care what anyone claims to know, or claims to have studied. The morning of those vaccinations she was as typical as any kid gets, and verbally advanced for her age. Within 15 minutes everything was different. She has been non-verbal ever since that moment. She developed all of the symptoms of autism within 15 minutes of those vaccines. She had zero of those symptoms prior. Shortly thereafter she was officially diagnosed with autism. Her condition pre and post vaccine is well documented. My husband is a nurse. We are *not* anti-vaccine. But what happened to our daughter is very real. And I wish so much that our government would be honest about kids like her, and open real and honest investigations into cases like hers, so that we can make vaccines safer for ALL children.

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Julie
Jan 24, 2012

I am so sorry, Debbie. Don’t you know, you just experienced a “coincidence” (Big Eyeroll here.) Your situation is a prime example of what the situation is. But of course they will blame it on your faulty genetics, not on the oh so saintly and perfect vaccines. THAT is what gets my ire up. Quit blaming the child’s genes and make a product that is safe for EVERY child, not just the ones who seem “perfect.” Either that or do a workup/history on each child to screen for a possible reaction. Ugh! I just want to bang my head on the table!!!!!

Please give a hug to your daughter from me, if she’ll let you.

Guest
Jan 25, 2012

Thank you, Julie. I try not to focus too much on how she got here, and just focus on moving forward. I don’t talk about what happened to her that day too often, as it is highly emotional for me to think about how different her life would be if she’d never had that reaction. And I cannot change the past, I can only move forward. I try to put my energy towards improving her life, not on the frustrations of the past.

We have done a tremendous amount of research and tried many different approaches in an effort to find things that work for her. She has came a long way. She is still non-verbal and is severely disabled from what happened to her, but she is making progress. She is happy at times again. She smiles again sometimes now. She does get extremely frustrated at the things that she cannot do or say to us, things that came so easily for her before the allergic reaction. And her frustration seems to be increasing with age. But she does let us hug her now… sometimes. :) Thank you for the support, and for not being one of the people that says she does not exist. It means more than you know.

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Kim
Jan 24, 2012

Anne, Thank you for this thoughtful piece. As other comments have noted, concerns about the proposed DSM5 autism diagnostic criteria are very real. The potential for harm and confusion on every level is palpable – education, therapy, insurance, social services, disability support, and science. The APA’s proposed change is, at bottom, an attempt to deny the very real epidemic of autism. The APA is setting up a scenario whereby individuals who no longer qualify for an autism diagnosis may not receive the services needed during their early years and then will be less independent and require more government services as adults – the potential long-term catastrophe is frightening. Maurine also rightly questions why autism is in the DSM at all – while autism affects the brain, autism is not a psychiatric disorder – more and more science supports the very real physical issues (mito/metabolic, immune, inflammation, GI, oxidative stress, allergies etc.) present in many diagnosed with autism.

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LJ Goes
Jan 24, 2012

Grant, could you please share those studies here? Thank you, lj goes

Guest
Jan 24, 2012

I’ve replied further down. (Sorry about this – didn’t catch on that this forum uses nested replies at the time I wrote.)