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« HuffPo Mentions Changes to DSM5 -- Readers Weigh In | Main | Dear DSM5 Team: Some Spontaneous Suggestions For You »

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

Confused womnanBy Anne Dachel

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 had 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 Media Editor of Age of Autism.

 

Comments

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I have a son with Autism. He's been diagnosed with PDD (nos), Asperger's Syndrome, and Autism. I don't understand why a neurological condition is classified as a mental disorder. Autism is a fact of nature, not nurture. If correctly classified as such, health insurance would cover treatment. For crying out loud, Alcholism is treated as a medical disorder, yet it would seem very clearly to be psychological(mental)in nature. Why do we have to jump through hoops to get our kids the treatment they need? The current system is crazy!

"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."

If you believe that, read case studies of childhood schizophrenia in the 1960s. No one can believe autism is on the rise if they've read about those kids.

“The Asperger community is a big vocal community, a reason in itself to leave the diagnosis in place.” Dr. Temple Grandin, Colorado State University animal scientist

My brother Loren was a late-diagnosed Aspie. He lived with “a problem that had no name” all his life, and suffered for it. From the time he started school, he was marginalized, misunderstood, teased and bullied unmercifully for being “different.” No diagnosis, no intervention, no help. He wrote about it in his autobiography, An Asperger Journey: From Hell to Hope (2010).

That’s why I pray, with millions of others like my brother, that the American Psychiatric Association does NOT eliminate Asperger’s Syndrome, as it has proposed, from the DSM5, the diagnostic bible of the profession, which is being revised in 2013.

You can help by emailing Dr. Dilip Jeste, president, at apa@psych.org. The Psychiatric association is soliciting comments. Feel free to use this column.

The American Psychiatric Association argues that Asperger’s belongs under the diagnosis “Autism Spectrum Disorders.” In a New York Times article, an autism expert at the University of Michigan, Dr. Catherine Lord, said that "Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder." (NYT, "A Powerful Identity, A Vanishing Diagnosis," by Claudia Wallis, reprinted November 2012).

"Nobody" means other researchers and clinicians like her.

Lord continues: "Asperger's means a lot of different things to different people. It's confusing and not terribly useful." She believes "mild autism" would be a better diagnosis. (Dr. Lord, c/o Melanie Cabrera at mec9066@md.cornell.edu)

I don't believe there are many Aspies in the world, or anyone who knows and loves them, who would buy this view. Clinicians talking to clinicians, "experts" talking to a few of their own small circle. "Mild autism" is not a diagnosis either. Nor does it cover an Asperger personality's unique social deficits and assets. Loren was never diagnosed with it, and never would be. Nor are most people today with the same constellation of symptoms.

Sure there are a lot of differences among people with Asperger's, just like those diagnosed with autism, just like humans beings everywhere.

But Aspies do share many common traits: they exhibit similar social glitches, ways of thinking and seeing the world, ways of absorbing knowledge and talking about it (and they can go on and on about many subjects), distinctive social, intellectual and brain wiring characteristics.

These characteristics are now, finally, recognized by families, friends, teachers, doctors and therapists. Equally important, the public has come to recognize them, including schools, state organizations, health insurance companies, and federal social security agencies.

It was a battle to get this far; it would be a tragedy to undo these gains.

Experts can talk all they want about what they need for their own research agenda and the nature of the "autism spectrum," but frankly it doesn't mean much; it has little practical use.

Some of us even wonder if Asperger's syndrome should be on the autism spectrum at all. Some researchers might start from this perspective.

My brother Loren wrote about living with Asperger's with painful honesty in An Asperger Journey. There are lots of great books, DVDs and other aides out now, since Tony Attwood published his pioneering book on Asperger's and the OASIS website was created.

An insightful recent description is journalist Ron Fournier's personal essay about his son Tyler in the National Journal (November 2012). It's one of the best descriptions of Asperger's I've seen in a long time (available online or email rfournier@nationaljournal.com). Tyler sounds so much like Loren, amazing, bright, different, endearing. But how lucky for Tyler that his parents recognized this, and that Tyler is getting the understanding and intervention he needs.

Loren tells what it was like to get an Asperger's diagnosis, after years of struggling alone to understand himself and find a purpose in life:
" I am 55 years old, and I finally have a name for the disorder that has plagued me from birth. I have been living in a parallel universe, the conventional world on one side, my Asperger self on the other. I filled the gap the best I could, stumbling along the way. In my own world, in a cauldron of invisibility, I tired forging an identity. After all the therapists and doctors (none of whom ever got it right), putting up with countless cutting and mocking remarks, trying all kinds of jobs, hating myself for over 30 years, I have a name for the disorder that has stalked me all my life. A 100 pound weight that I carried with me all my life was finally lifted off my back." (Chapter 10, p. 85).

Eliminating the Asperger's diagnosis will put that 100-pound weight back; it would be too much to bear. It would be harmful.

"Do no harm," is a doctor's first principle: the Hippocratic Oath. Please, it took so long to recognize Asperger's. The diagnosis DOES mean something. It DOES have meaning. And it offers hope. Leave well enough alone. Leave the Asperger's Syndrome diagnosis in the DSM5. Do no harm.

As a mother of a child with Aspergers, this is all totally unbelievable. How come they are picking on autism and not people diagnosed with bipolar disorders? That is also a diagnosis based on one therapists/doctors opinion of the person's symptoms. With Autism and ASD, there are definite behaviors that are consistently seen in the person with autism. I'm afraid that our children/adults will suffer do to this change and they won't stand a chance of being good tax-paying citizens holding down jobs and raising families without the early intervention servies they receive because of that autism diagnosis. This is truly sad!!

I am glad Sherry that you think you are winning in this.
And so sorry for the hurtles you had to leap through to get some satisfaction.

While I normally agree with a lot of what is said here, and there probably are a lot of practical consequences that will come from such a change, it might actually be beneficial in the long run. One of the worst things that can happen for trying to figure out the causes for a disease is to throw *other* diseases into the mix under the same name. If you have every weird disorder classified as "autism", then all of a sudden it gets harder to pin down the cause of both autism and the other disorders, because they are all lumped together. I imagine that's what happened, and the researchers decided they needed to have a better understanding of what is happening to people, so they restricted the definition of autism to something which can be definitively locked down as a single thing, and moved the unknowns to an "unknown" category. This might actually help make the case for vaccine-related problems. Let's say, for instance, that "true autism" is unrelated to vaccines, but that a number of diseases that *look* like autism can arise from vaccines. By removing the title "autism" from the equation, you can better see how vaccines are related to these disorders.

Yes he is in a collabrative classroom, Benedetta, to answer your question. He is in the 5th grade. We have paid for our own psych. testing and OT. I still think the school dept. should do an educational eval. They are still refusing to give him OT services even with proof. and YES, believe it or not there is only 1 high school and 1 middle school. incredible, huh.(small town) We have a meeting next week to discuss his grades but I think I won. I'm pretty sure we finally got an IEP for my son and he'll finally get the help he needs (fingers crossed) Thank you for all the helpful info.

Sherry;
I hope I was understandable toward the end, I had to go to help my mother with her shower.

I thought of something else too. If your son is not severe - they will not put him in special ed (at least in my part of the country) untill the fifth grade. At least that is what they did with my son.

They have other programs sponsored by the federal government (as opposed to the state government) for those that need extra help, and they are pulled out during the school day and given extra help. Even with this extra help it still took me ever night working with him to begin to read. Once you can get them to read - I think it helps in language.
My son was severe enough that he was NOT speaking hardly at all-- His third grade teacher even asked me if he spoke at all, and I had to admit seldom! Not to mention I had to keep clothes at school for accidents.

Do not expect speech from the public schools -- speech is for students with minor - very minor speech problems. Of course those programs that they pull them out of the classroom ---do work on speech too as they try to help them learn to read.

Occupational thearpy I finally got that from the school when my son was in middle school, and they reasonable gave us extra help when I pointed out he still was not cursive writing.
These programs I am talking about are called Title One;
This quote will explain it a little more:
"This formula grant program is the largest of the Elementary and Secondary Education Programs and provides districts with extra resources to help improve instruction in high-poverty schools and ensure that poor and minority children have the same opportunity as their peers to meet challenging state academic standards. The No Child Left Behind Act of 2001 requires states to develop standards in reading and math and assessments linked to those standards for all students in Grades 3 to 8. Districts and schools must use Title I funds for activities that scientifically-based research suggests will be most effective in helping all students meet these standards"

It was not a bad thing to have a child like mine in with regular students. Speech came eventually - and it helped being around others, that could speak at this young age.
Just something to think about.

Sherry;
*Have you used the school's psy?
*Has the school psys met with you afterwards to tell you the test results? This gives you a chance to point out things that you feel needs attention and for them to explain their reasons for refusing him.
*You can pay for your own psy test, most psys are usually not paid by insurance, anyway; so their rates are not impossibly high - around 300 dollars, for a three day testing. My son's doctor -- no longer peds found a psy that took insurance, this was his last batch of testing at age 23 years old though,but when he was younger I did take him to a group and they teased out tourettes -- but everything else that the schools said matched with what they said. Of course it was epilespy what I was concerned with and they missed.
*Is there only one school in your area? Usually there is not!
For example; sometimes you can pay a tutition and the city school or vise versa the county school will take your child. You might get better services in one school better than the other.
*are you concern that he will fall behind? If so then keep all psy tests, you r written refusal and when he is making bad grades and you talk to his teachers who are at their wits ends ---- they will not be able to refuse him then.
* They also may group him in your school. Group regular students in with special ed students. They don't like to say this outright, as a matter of fact they won't! I as a teacher have had many such a group (because they are sweeter than regular students).But also they have the speicial ed teacher in with them to help, and nothing like two heads to figure out to help every last one of them. them group. Because that speicial ed teacher is suppose to help every last one in that class and not pick out just theirs.

Hope some of this helps.

Benedetta-Thank you for that information. Hopefully I will catch a break. I did try recently to have an advocate at our last meeting with no such luck. They reviewed my case and said that they also believed that my son did not qualify for services.

Sherry;I meet a lady lawyer at a autism meeting for grandparents at the Univeristy. She told everyone of us that she would fight for us - give us free advice - encouraged us to use her name and gave us other lawyer names that the school boards knew and feared.

Maybe if you attend some these meetings you might get lucky?
Maybe if you can contact your local autism chapter - they have them now - you can find someone to help you?

I have a meeting this week to discuss my "quirky" son as his school dept. calls him. I have been fighting for Special Education services for him for 7 years now. He has been denied an IEP for all these years. He has 2 brothers with Autism. I have been told by different pediatricians that they "think" he has Asperger's. Medication is the main topic at all of these past meetings. These people who do not know my child show up at these already tense meetings and tell me to "medicate" him. "Oh medication does wonders." is what I hear. I did put my oldest son on medication per their advice. (I was naive) I watched him get sick everyday, not eat, become even more withdrawn, and lose weight. "Oh try a different one" they say. I tried 3 different kinds and each time he got sicker and sicker. During that time, my brother dies from accidently mixing meds. I guess you can say that I'm against meds (especially vaccines) So what happens now to my "quirky" son who gets good test scores, but can't write? He can't function socially. He doesn't have friends. He can't even tie his own shoes. He has been bullied-he doesn't want to attend school. He has been diagnosed with ODD, Anxiety, Depression, Tourette's, Motor Dysgraphia, etc....What will happen to him? I can't even get him help at school. @Getting Tired of it-you have the right idea. I may have to homeschool him. My next step is a Due Process Hearing and I can't afford a lawyer to fight the BIG BAD School System...I'm tired of fighting............. :(

To Bob Moffit- The cynic in ME, says that the CDC will not give us more data on prevalence of autism until they can easily factor in the year of the swine flu, which created a new cohort of children poisoned by the mercury in the flu vaccines given that year. In this way they can STILL say, (insert bleating sounds of CDC sheep) : "But we took the mercury out of the vaccines and autism rates are not falling!" And if the swine flu doesnt muddle things up enough, then the new DSM will. What on earth are these new diagnoses going to do with the symptoms of bowel disease, mitochondrial disorder , seizures, etc. which they dont yet admit to being part of autism.? what is the use of a diagnosis that cant get the symptoms right? This is clearly the wrong time to be making changes

So if they change the diagnosis definition of autism to more restrictive parameters, AND the numbers still rise, would that not be an interesting development? How would they then explain that?

Change the definition and you eliminate the epidemic. Really?

My son, age 38, has a mixture of diagnoses so what is he? He has mental retardation, autism, bipolar,OCD and paralyzed bowels.

Will it just be decided that he doesn't qualify for any services because he is too much of a mix of disabilities?

DSM-5 is just a part of the "pop culture autism"

....created and covered by the news media, medical associations, and most universities who are always looking for funds to "study anything in any manner" for any desired or requested result.

Yes, she actually said it - "Squishy" - that the process of diagnosing children has become, Well, Matt, squishy. I think it was Friday? I was getting ready for work watching the Today Show around 7:20am or so, and Matt Lauer asked Nancy if this redesigning the DSM-5 was due to an actual need (paraphrasing here), or did it have to do more with the costs associated with Autism (go Matt!). Her response was SO insecure and awkward, as if she knew the type of scrutiny was about to face, thus the coining of the official new term (squishy). I have searched for this segment on line but can't seem to find it...

Ya know, I have a different take on this. I never heard from the US Government when my son's adverse vaccine event happened and was reported through VAERS. I never received funding from the U.S. Gov'ment when he needed hospital treatments and follow up treatments. I never received special ed services for speech or OT from the Gov'ment and I homeschooled him since no school seemed to fit. He got the diagnoses High Functioning Autism, but you know what? I don't think he has Autism. I think what he really has was vaccine damage which caused autism-like symptoms. And guess what it took love and me standing for and paying for everything for him to battle his way back into our world. And 8 years later, we're still battling.

So do away with all the dx in the world. Great. Maybe we can start talking about what really happened and call a spade a spade. He doesn't have Autism. He has vaccine damage, should have been compensated, should have received treatments recognized to help him. But you know what folks? The government has no right to determine any of this. Its private. And the idea that we get to choose what goes into our babies is private. So, big gov'ment, go away!! Personal choice, come back. Because Gov'ments don't fix problems - people do.

I'm tired of the bureaucracy that continues to be sponsored by big pharma corporatism.

So, what are they going to do with all the kids who can't do regular school? That situation won't go away with changing diagnoses.

How can you "out grow" autism when it is "diagnosed as Regressive Autism" shit! new meaning on regressive albeit!! Wiki update just try it?

Angus
P.S.
Father of Low functioning son with Autism aged 15 with "school assessed age of around 2 years at best" 12 years ago “ it gets better “!give me strength!

That person you quoted from NC that said the autism diagnosis does not bring any additional services or help is unfortunately totally right about NC. I had my child diagnosed at age 23 months thinking it might help get more (quantity) or more relevant services. It didn't. All it did was give doctors and professionals an excuse for any problems that he might have. "Diarrhea? Autism. Eats 3 foods? Autism. Screaming for hours on end? Autism. Passing ketones in his urine? Autism. His left leg fell off? I see he has autism, that's probably why!"

So maybe the fact that NC is so totally backward and decades behind in autism treatment is a good thing! If you live in NC and you lose your diagnosis, no problem, we never had services anyway!

This is a great history of recent autism treatment politics.
One point I would like to make is about the insurance issue:

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.’

This is terribly misleading. In virtually all of those states, the "treatment" referred to is ABA therapy. Biomedical treatments and DAN doctors are still not covered, and probably never will be. I believe many kids with regressive autism (vaccine-induced encephalopathy) do not get the diagnosis so that individual symptoms like GI issues and neurological damage CAN be covered. This is a choice that informed parents make. We got the dx because we thought it would result in more insurance coverage, but it resulted in less, because autism is "untreatable and incurable." This is a semantics shell-game the insurance companies play.

So 10 to 20 percent "outgrow" autism. But they haven't got any idea why because frankly they never bothered ASKING, they assume it just happens for some inexplicable reason so maybe it will happen to your kid too even if s/he doesn't qualify for services anymore. God FORBID they ask any questions of the ones who got better, they might get answers that would put them out of business. Are those 10-20 percent the ones whose parents have crawled over broken glass for five years to find the right doctors, research unconventional treatments, pay out of pocket for testing/antivirals/supplements/chelation/HBOT/IVIG/PT/OT/ST/ABA/1:1 aides/social skills training/special schools? The ones who stopped vaccinating? Who went GF/CF/SF? The ones who treated GI and metabolic issues? Or are they the ones put on Risperdal at age 2 and la di da all better now?

My wife and a friend with an autistic son engaged in some mock rejoicing the other day: "How wonderful that our sons are now going to be cured of their autism by the DSM-5 folks!"

We are well on our way to creating a new "class" of people. This is exactly how it is done. Other epidemics were treated in just the same way. Directly after the introduction of the polio vaccine, the epidemic immediately subsided. Not because there was less sickness, but because the definitions were changed!

Now they try to treat the autism epidemic in the same way, only it won't work. Because autism is far more reaching and insidious, open to creeping subjectivity at every turn. A group of people with no real diagnosis but a "sub-set" of individuals that no longer fit into society. The scariest thought ever. No longer needing assistance, by definition, and this class of people will be the recipients of the worst oppression ever seen in our history.

LisaB - LMFAO!!!!

In a short time my son may not have Autism, or at least not the same Autism he has today, maybe I should be happy? Right... NOT! Its more than likely he will begin to lose services critical to is ongoing recovery. I will fight the current proposed DSM changes and continue to write letters for him and for all that follow.

Every time I see or hear quotes made by Nancy Snyderman I cannot help but think of this guy... Dr. Leo Spacmen from 30 Rock. Did she really say the diagnostic criteria has become "squishy"?

This is a Dr. Spaceman link, for those that would also like a new way to view her.
http://www.hulu.com/watch/95442/30-rock-dr-spaceman-medical-moments


CBS News interviewed Dr. Catherine Lord, one of the experts working on the DSM5, about the changes in autism. She's still talking about BETTER DIAGNOSING. She urges parents to find the best help for their child. She claims kids outgrow autism. So, doctors STILL don't know what they're doing? It's up to parents and WHY do autistic kids lose their diagnosis? She never explained.

http://www.cbsnews.com/video/watch/?id=7396089n

http://www.cbsnews.com/8301-505269_162-57363711/new-autism-criteria-expert-seeks-to-calm-fears/?tag=morningFlexGridLeft;flexGridModule

"Kids can outgrow the disorder or they get better because they were misdiagnosed."

Catherine Lord: "Either the diagnosis was wrong in the first place or the kids grow out of it."

"Not everyone who gets a diagnosis of autism continues to have it forever."

On redefining autism:

Lord: "Families are very very concerned that their kids are going to lose their diagnosis. It's really important to reassure people that there's no intention that that will happen. ...The intention of the new criteria is to better describe children--and adults--who have autism, Aspergers Syndrome, PDD-NOS, ... We don't want criteria that diagnose everyone as having autism. We want to do a better job of diagnosing the people who do. We're not trying to exclude anyone."

Anchor: "What's so hard about diagnosing autism?"

Lord: "Although autism is a neurobiological disorder, ...the diagnosis is made purely on the basis of behavior. .. We're trying to get better, faster, and more accurate in diagnosing and the question is, how to do that?"

Then Lord went on to talk about kids who were misdiagnosed with autism losing that diagnosis.

Lord then claimed that 10 to 20 percent outgrow autism--those without other severe problems.

(Are we talking about Aspergers? I seriously want to see the child with full-blown autism who simply outgrew it.)

Lord: "I think they really get better." (What happened to the years of, THERE'S NO CURE FOR AUTISM?)

"Parents need to first of all get a careful diagnosis. They need more than a brief office visit...then you have to figure out what treatment makes sense for your child." (WHY? Because the doctors doing all the better diagnosing still don't know what to do?)


"All this really means that the doctors who gave us “better diagnosing” were wrong. Instead they were responsible for misdiagnosing and over-diagnosing."

IF the above were true, wouldn't these doctors be left open for some form of litigation? I mean, parents who followed approved therapies, interventions and educational models would have basically had the medical equivalent of Plymouth Rock dropped on them. Even things like the emotional toll and choices for charitable donations would have to be considered undue harm.

This was fabulously well-written, Anne. There seems to be no end in regards to the absurdity with which our society has dealt with (or not dealt with) this man-made epidemic.

After over a decade of treatment, my son still meets every single criteria of the newly revised definition, only now, I find myself feeling lucky that he does. How sick and twisted and pathetic is that? I'm afraid the APA is going to have to dream up some new diagnosis for all of us autism parents as we slowly go insane from having to cope with all this crap.

Such a great piece, Anne. According to Nancy Snyderman (NBC Today Show), the diganosis of Autism spectrum disorder has become "squishy", therefore perameters need to be redefined. She vehemently denies this having anything to do with the costs of Autism, but simply a re-catorigization so we are better at assessing these children. Really, Nancy?What I hear screaming through this bullsh@t is a complete DISMISSAL of compentancy among prefessionals who spend their days assessing these kids according to some very concrete guidelines. Its not that easy to just diagnose a child with something without having followed protocal for assessment (I know it happens, but I don't beleive that is what we are seeing in this case). Therefore, when she says the process of diagnosis has become "squishy", what she is really saying is that trained professionals who work in the field of assessing and diagnosing kids who have symptoms associated with spectrum disorders, are WRONG.

Secondly, what I predict as an outcome of the recent wide-spread reduction in numbers of parents vaccinating their children is an accomanied decline in the number of kids diagnosed on the spectrum. What the media will report though, will be that the decline is do to the restructuring of the DSM-5.

This all just keeps getting more and more rediculous...

Oooh, Snyderman on when and how to fire your pediatrician. When they don't answer your questions- you mean about stuff like vaccine safety? Or when they botch a dignosis- you mean like when they discount your child's vaccine reaction?

Another place to find new names for these afflictions is to name them after people with very hard foreign names.

"Aspergers" got to love that name.

It is always nice when someone writes on the internet in dismissing me about vaccines; they know better because they actually work in special ed classess as an aid, and there are plenty of those Asburger type of students.

Sooooooooooooo how many more long weird string of pervasive kinds of words are we going to have to relearn?

Communication (insert unfamiliar word here -for disability) ---(insert another word for "slow")

That could be kind of fun -- it is like writing -- and one thing about it - psy majors do not have a communicaton disorder of any kind!
Even as I write this I imagine that they are scurrying to their dictionaries in search of words that have not been used since way back in the 1700s - esp love those words that were a mixture of Galic, French, Latin, Greek,and oh - the actual country of England may have used them occasionally - just enough to get these words into the dictionary.

The psychiatrists aren't telling us anything we didn't already know. They have never understood what autism is, what causes it, or what to do about it. Now they are simply reminding us they don't even recognize it when they see it.

Senator Tom Harkin held a special hearing on autism August 5, 2009. Much testimony came from Dr. Geraldine Dawson of Austism Speaks and Dr. Tom Insel head of the IACC (Intragency Autism Coordinating Committee).

Toward the end of the hearing the following quote by Dawson directly states (and concurred by Insel) NIH has an ongoing study of 100,000 children called NIH National Children's Study, followed from birth having their vaccination records, and also kids not getting vaccinated because of parents declining vaccinations.

Yet, Dawson says there is no money to actually analyze the data to determine vax, no-vax rates and any autism connection! Senator Harkin then comments.

From page 54: (I hope this text gets legibly transferred)


"The other thing I would like to put out is—or, suggest is—I agree
with Tom—Dr. Insel—that a randomized study in which we ask
parents to forego getting vaccines is not ethical and not feasible.
We could, however, study the potential role of vaccines in the context
of at least two ongoing NIH studies. One is a study, that both
NIH and Autism Speaks are funding, which is following a cohort
of at-risk infants. These are infants who have an older sibling with
autism, and so, they have a much higher chance of developing autism.
And we know that many of those parents are choosing to vaccinate
their children, and some of those children are—parents are
choosing not to vaccinate. So, it’s important that we leverage those
studies to look at how vaccination rates among these at-risk—genetically
at-risk infants affects outcome.
The other study is the NIH National Children’s Study. So, this
is a cohort of 100,000 children that are being followed, prospectively,
from conception through adulthood. Now, keep in mind that
600 individuals in that cohort will develop an autism spectrum disorder,
based on our current prevalence estimates.
One of the weaknesses in the current design in—and Autism
Speaks is overseeing the advisory—expert advisory panel that is
advising the National Children’s Study on how to leverage this
study to inform autism—but, one of the weaknesses in the current
design is that they’re not collecting medical records, so they’re not
collecting information that would inform how parents are vacci55
nating their children. And again, with many parents now choosing
not to vaccinate their children, this is another opportunity, with
the collection of medical records, that we could leverage an ongoing
study to address this important question.
And I want to say that our position at Autism Speaks is one of
very evidence-based—we’re really agnostic with respect to whether
vaccines play a role or not, but we believe that, by addressing parents’
questions, that this will increase confidence in the vaccine
program and will ultimately lead parents to be more likely to vaccinate
their children, which we think is going to be critically important
for public health.
Senator HARKIN. I did not know this. I’ve been a big supporter
of that Children’s Study, and I have used my position on this subcommittee
to make sure that we continue the funding for it, and
keep it going. I think it’s one of the most vital longitudinal studies
that we’ve ever done.
Dr. DAWSON. Right.
Senator HARKIN. And you’re telling me that of all the money
we’ve put in for that, and we’re going to continue to do this—what,
20—is this a 20 year? How many years is this longitudinal study?
20 years—that they’re not keeping medical records?
Dr. DAWSON. Well, the—so, they don’t have the—no, it’s true—
they have questionnaire data, but they do not have the funding to
go back and actually obtain the medical records and extract the information
that we need. And this not only affects our ability to address
questions about vaccines, but it also affects our ability to address
really, critically, scientifically based questions like, What’s
the effect of a mother having a flu infection during pregnancy? The
specific medications that she received. Any kinds of prenatal and
perinatal events. These are all only being obtained through a questionnaire,
rather than medical records. And so, our advice to the
National Children’s Study is, this is a key component. And the reason
for not doing it is strictly financial. They just don’t have the
funds to do it.
Senator HARKIN. Dr. Insel.
Dr. INSEL. I just want to make sure that you don’t go away with
the idea that they’re not—that they don’t have medical records.
They’re not able to obtain the original records, with the current
budget. And they’ve looked at the possibility of getting supplementary
funding that would allow them to obtain the raw records
from the physician of referral. That has not been done. So, Dr.
Dawson’s right about that."

"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?"

Silly me .. but .. the cynic in me suggests the CDC DELIBERATELY CREATED A THREE YEAR LAG into their study of autism rates .. to distance themselves from any dramatic decrease in autism rates that would be easily recognized as resulting from the removal of dangerous levels of thimerosal from vaccines.

My grandson .. born in 1999 .. diagnosed around three years of age .. just turned tweleve years old .. was diagnosed at the HEIGHT of suspicions regarding thimerosal in vaccines .. yet .. if I read the CDC "three laging year statistics correctly" .. HIS AGE GROUP HAS YET TO BE COUNTED.

By the time the CDC actually counts the thimerosal years .. and .. the years immediately following thimerosal's removal .. any noticeable DECREASE in autism will not be attributed to the then "long removed thimerosal" .. but .. instead "better diagnosing" will be given credit for the decreasing numbers.

Changing the DSM will only further "MUDDY THE WATERS" REGARDING THE ACTUAL NUMBERS OF AUTISTIC CHILDREN IN WHAT HAS BECOME NATIONAL TRAGEDY.

This is a fantastic overview of the autism controversy, Anne.
First, autism never belonged in the DSM to begin with. Autism is NOT a mental disorder; it's a metabolic disorder affecting every organ in the body. Children with autism suffer from such things as-inflammatory bowel disease, oxidative stress, immune dysfunction, encephalopathy. One of my grandchildren recovered with bio-med treatments, not psyche medicines. This change in diagnosis is an attempt by government health officials, drug companies, most pediatricians, psychiatrists and the like to take autism off the epidemic map. The thing is that it won't. If this changes goes through tens of thousands of children won't receive services they need(as if there aren't waiting lists already) and the epidemic will only get worse. The above want to see the vaccine program, with its ever-increasing vaccines, continue down the road of damaging children. They won't have to study the cause and cure because they think they will have wiped out the threat. Take autism out of the DSM. When will health officials, doctors, politicians stop this madness and harm to our children?
Maurine

However, if all of these children and teens with problems don't have autism...then maybe they have vaccine injury. Because all of these other diagnoses haven't been studied in relation to vaccines, ya know? There may be a silver lining here amidst the gaming.

My son will no longer have 'autism' as of May 2013.
Poof! it will just be gone...

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