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Simplifying The Definition of Autism: After 16 Years Asperger's Apparently Doesn't Exist

NowYouSeeIt Simplifying the definition of autism; After 16 years, Asperger’s apparently doesn’t exist
By Steven Higgs

(Steven Higgs is author of the "Autism and the Indiana Environment Blog" and editor of The Bloomington Alternative. He can be reached at editor@BloomingtonAlternative.com. Comment on the original post at The Bloomington Alternative HERE.)

June 6, 2010

I spent the past week organizing and reviewing my research on the connections between autism and the environment, which once again reminded me just how little anyone -- experts, doctors, parents, journalists, whoever -- actually knows about the subject. The only truth I’ve found in almost two years immersed in the subject is that definitive answers to the most fundamental questions about autism -- What is it? What causes it? What can be done about it? -- are virtually nonexistent.

On a journalistic level, that’s pretty damned exciting. There’s always something new to explore and write about. But on a societal level, it’s downright scary. Take the what-is-it angle. Here we have a range of mental disorders that, depending on how the spectrum is defined, impacts the lives and families of roughly one out of every 100 American children. Scientists and experts have studied it for more than 70 years. And yet, they haven’t even agreed to a firm diagnosis.

In February, the American Psychiatric Association (APA), the ultimate authority on what is and isn’t a mental disorder in the United States, proposed fundamentally changing the diagnostic criteria for autism, again. An APA task force assigned to study the matter believes that the five Pervasive Developmental Disorders that comprise the autism spectrum -- Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disability-Not Otherwise Specified (PDD-NOS), Rett's Syndrome and Childhood Disintegrative Disorder -- should be eliminated and folded into one diagnosis called Autism Spectrum Disorder.

"Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association." - National Public Radio, February 2010



“Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association,” National Public Radio (NPR) reported when the APA released a draft of its Diagnostic and Statistical Manual of Mental Disorders-5 (DSM-5) four months ago.

The DSM-5 is scheduled for publication in May 2013, and if the recommended changes are included, it would mark the fourth complete overhaul of autism diagnostics since 1980, when diagnostic criteria for Infantile Autism was first included in the DSM-3. Autistic Disorder and PDD-NOS were added in a 1987 revision of the DSM-3. Asperger’s was added to the DSM-4 in 1994.

Not only do the task force members suggest subsuming all five forms of autism into one, they also streamline the diagnostic criteria to a mere 115 words. “Marked deficits in nonverbal and verbal communication used for social interaction” will cover everyone on the spectrum, from those who do not speak to those who excel at the highest levels of academia.

The issues that these changes raise are many and varied, from the social to the scientific.

The first parent of a child on the spectrum I ever spoke to objected strenuously when I suggested her son was autistic. Asperger’s, she informed me, was not autism. I was simply misinformed.

NPR quoted Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger's From the Inside Out. "I personally am probably going to have a very hard time calling myself autistic," he said.

"Not only do the task force members suggest subsuming all five forms of autism into one, they also streamline the diagnostic criteria to a mere 115 words."

One of my students last semester wrote about a school here in Bloomington called the College Internship Program that educates young men and women with Asperger’s to claim “their place as citizens of the world.” To classify them in the same category as the Autistic Disorder kids I’ve met and whose parents and caregivers I’ve spoken to seems counterintuitive.

I’m neither a doctor nor a scientist, and the arguments for the change make some sense. In many ways, they’ve come full circle, grouping everyone with an ASD under one diagnostic category as they did in 1980, albeit it a new name with a broadened base. But I was among those who, when I heard the DSM-5 would bring changes to the definition of autism, expected further differentiation of the criteria reflecting the complexities of the disorder, not simplification.

My student interviewed Dr. Christopher McDougle, an autism researcher and chair of the IU School of Medicine’s Department of Psychiatry, who echoed several doctors and experts interviewed by NPR. “On the one side, I think that it is reasonable to eliminate the diagnosis of Asperger’s Disorder from the current criteria because there are no objective data that support it as a distinct diagnostic entity,” he said.

But, he added, significant research on Asperger’s has been conducted since 1994, and its value is now in question.

"Significant research on Asperger’s has been conducted since 1994, whose value is now in question."

Dr. Edward Aull, a pediatric specialist at St. Vincent Hospital in Carmel, agreed with that assessment. “As you look at research papers, you won’t be able to compare them from one to the other because they have changed the criteria,” he told my student. “People in one criterion don’t meet the criteria in the other, so that is a big thing.”

Unfortunately, here in the waning days of the Reagan era, money and politics can never be discounted in anything science does, especially a discipline as subjective and imprecise as mental health.

And, as I was reminded when I recently informed a health care professional with preconceived opinions on autism about the proposed changes, cynicism about the whole subject pervades public opinion.

She looked at me knowingly and said, “It’s a numbers game, isn’t it?”

She said it twice.

Steven Higgs is author of the "Autism and the Indiana Environment Blog" and editor of The Bloomington Alternative. He can be reached at editor@BloomingtonAlternative.com.

Comments

forbenmyson

Some times there aew just NOT enough rocks in the world.

bensmyson

Statistics will not mean anything after this. One in whatever, wont mean a thing.

Meanwhile, we wait instead of turning the world on its head by taking to the streets.

"Oh we will get legislation to help..."

"The school will provide..."

"Someday Nancy Grace will do a missing person's story about kids lost to autism.."

"Just wait until someone important's child develops autism..."

"God is watching..."

"In a year or two the FDA will come around, there will be a whistle blower..."

"ProQuad? Just wait, everyone will see..."

Why not just throw a rock at a tank, a window, throw a rock at a pediatrician front door.

The coast of the gulf will be filled with tourists sunning themselves on pristine beaches long before anyone recognized our kids and what is happening to them.

Im throwing rocks, might even get me a slingshot and hit some Goliath squarely between the eyes someday.

Benedetta

I meant the judge knew nothing about autism or aspergers.

They did not out right say no, but we are to get some more stuff together by the end of the month.

I already have one of those big huge binder full of stuff.

Benedetta

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

I found this. According to this- well my aspie is still an aspie, or still on the autism spectrum.

If I were to live to 120 - I am very sure that all this vaccine injury stuff will continue to haunt us. I am sick of it. On top of all this my daughter is still convinced that she might have bots. She went out to look at her flower garden and did not wrap her wounds (almost healed) and worried all evening that a fly might have landed and real fast like, laid some eggs in her wounds. Oh, geez! Well the up side is SSI did not turn us down,yet!--- and I can still reason and talk my daughter out of this crazy thinking.

Benedetta

I went to Lexington today with my son to be seen in front of the judge for SSI.
They did not allow me in and spoke only to my son.
Trying to get anything out of my son is like pulling teeth. So who knows how it went.

But our lawyer said that the judge said he did know anything about autism and aspergers.(he is an old man, but it may not be to late for him to become a grandfather to such) He asked if my son had been evaulated in or outside the school setting.

Answer is both,but why is this important does anyone have a guess.

I have a huge note book that I gave to the lawyer, it has all the school records listed in it. I pointed it out to her. She said that each one needed a summary in front of it. I have a summary in the very front of all of it."whew" but I will redo it.

I have pictures of my son's bed with lined up Dragon Ball plastic figures (they take over the whole bed and he is 24)

Now here comes a question - I am begging anyone on here to answer. Please! The lawyer said they want another psych test done by a social security psych. So is this DMS-5 now in play?????? What would be your guess on what that will mean??? What is the qualification to be declared aspergers now?

Jake Crosby

Nope, just part of the autistic spectrum now.

Benedetta

Michael John Carly??? Is going to have a hard time calling himself autistic. Has he looked at the new guide lines to see if he even fits into any of the new GSM-5???

A lot of these apsergers speak just fine, just little or no small talk - Is that right???

My son has trouble with syntax of speech, so I am thinking just from the brief summary of what is aspergers - autism that he may still be included in the new GSM-5.

Please nobody ask me what syntax of speech is, because I really don't know myself - it is just what I have been told.

L Land

It's a numbers game and you can't compare numbers when they change the criteria - - is the point of the change isn't it?? It will take the CDC's Dr. Rice and her team even longer to count the number of kids with autism and the rates will be incomparable so then they can continue to claim the rates of autism are NOT going up and there's no crisis ..... (and the APA gets high fives from the AAP, CDC, and the rest of the team)

Jenny

Just another way to muddy the waters. Like saying they take thimer. out of vaccines, but then still use it in processing with the remaining traces still exceding EPA guidelines. And then still using it in flu vaccines and then create a false pandemic to justify a huge increase in thim. containing flu vaccination recommendations to offset any apparent drop in ASD numbers. Then, don't just give it to children, give it to pregnant women, to futher complicate it, and in a way that most women never keep track of what they got and when. Take away the monvalent vaccine options, too. What is the result? A convoluted process of post vaccination research of government agencies comparing apples to oranges and claiming that their research is applicable and accurate.

Jarod's family

It's refreshing to read a novel point of view from a journalist who really gets it. Yes, "it's a numbers game" is about the most succinct way to put it, isn't it?!

Mary

They are putting aspergers in with autism because they want to hide that the younger kids have aspergers not autism. Only the kids walloped with thimerosal got autism. The younger kids with less thimerosal got aspergers. They must quick put asperbers in with autism to explain the decline in kids with true autism. Next we will be hearing about inclusion program to explain away the closing of autism classrooms.

Benedetta

I got it!
Eureka!
They are trying to narrow it so many people with Aspergers will be missed. They do not have to count them.
They can say autism numbers are not going up, see we even included the aspergers (never mind that 99 percent of the aspergers are now being missed)and the numbers are staying the same.
Creeps - but they are not as clever as they think. Kids in special ed in the schools will state the truth in the tale.

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