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.