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Report: New Autism Definition Could End ‘Epidemic’

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(Updated: January 20, 2012 at 4:23 PM CT)

Many currently diagnosed with autism could lose the label if proposed changes to the definition of the developmental disorder go through as planned, a new analysis suggests.

The American Psychiatric Association is currently working to revise the definition of autism that will be included in the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM, which is expected in May 2013.

The manual is used by mental health professionals, researchers and insurers alike to determine what symptoms are worthy of an official diagnosis.

Proposed changes call for related disorders like Asperger’s syndrome and pervasive developmental disorder, not otherwise specified to be folded into an umbrella diagnosis of “autism spectrum disorder.” Moreover, individuals would have to meet a more specific set of criteria to obtain the new diagnosis.

Now, The New York Times reports that according to a new analysis the changes could dramatically reduce the number of people who qualify as autistic, potentially stripping the label from some who currently have it and halting the rapid rise in autism prevalence seen in recent years.

“The proposed changes would put an end to the autism epidemic,” the author of the analysis, Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine, told The Times.

That has many in the autism community concerned about what could happen, especially to those on the high functioning end of the spectrum. They worry that without an autism diagnosis, individuals could also lose access to supports and services.

“Not only will tens of thousands of spectrumites — if not more — be at risk for going back to the days when we were thought of as rude, nervous, or incompetent; but equal numbers of spectrumites will happily be denied the services they need by financially-strapped agencies,” wrote Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership, in an email to supporters asking them to call the psychiatric association to oppose the proposed changes.

Experts working to develop the new DSM definition are sharply refuting the new analysis, however. They pointed out to The Times that the report relies on data collected in 1993 and said that other estimates have indicated the changes would affect far fewer people.

In a statement released late Friday, the American Psychiatric Association said field tests of the proposed changes indicate that there will be no variation in the number of individuals treated for autism should the revisions go into effect.

“The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from autism spectrum disorder,” said James Scully, medical director of the American Psychiatric Association.

What’s more, the organization said the public will have another opportunity to weigh in on the potential changes. The psychiatric association will open up an additional public comment period this spring.

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Comments (29 Responses)

  1. fairlady68 says:

    Michael John Carley: You are so right.

    Fred R. Volkmar: You sound like a pretty cold-blooded guy. Let’s hope your words are quoted out of context.

  2. Rosa H says:

    Why would we do that to our children? Do we really think that these behaviors/needs are choices? caused by poor parenting? Get real something is not working quite right and everyone needs to provide support, understanding, and continue the research. Years ago when I worked for an agency and we did screenings.. at the top of the paper you might see FLK or FAK …Funny Looking Kid or Funny Acting Kid…these were our notes to keep track of these children as it didn’t appear they had diagnosis but there might be something going on. Those of us still working w kids know there are needs as do parents.

  3. Anne C. Paine says:

    How does one contact the psychiatric association?

  4. Lela says:

    My own child would be in the group that loses services. I hate to imagine what would happen if he lost his supports at school. We’d have to pull him out and homeschool him. He would NEVER make it without those supports. They took him off his meds just for a month once and he ended up having a tantrum so bad he broke a door…this scares the hell out of me. You’ll see more of these kids in juvenile facilities, labeled as ‘behavioral problems’ or, later in life, in prisons.

  5. Melody Barton says:

    To Anne C. Payne:
    Here is the American Psychiatric Association email address one uses to express concerns:
    dsm5@psych.org.
    Best wishes as you attempt to make contact with them.

  6. autumn says:

    What?? Okay children are born with this, children can’t help it what they have and not going to help those children? How heartless is that!!! When that happens, many parents are going to pull their children out of school and home school their own children!! This is very cruel not to support these children to help them to teach and support them to better themselves to give them confidences.

  7. Amy W says:

    I would like to know who all is behind this proposed change. Drug companies? The vaccination industry? insurance companies? I know it’s not teachers, therapists, parents, grandparents, etc.

  8. B. Davis says:

    Finally! I am so glad that research is being used effectively. Those persons that are truly autistic, will continue to receive the services they need to be successful. I have to ask, is the term ‘spectrumites’ an official term? It sounds barbaric!!

  9. geeegee says:

    The AMA is not the arbitor of reality. It has been compromised as has the FDA, by Big Pharma.
    Parents and people in this field should be screaming bloody murder! If a person cannot hold a job, or have relationships, or continue education, or live independently I do not care what definition they use. Remember their stance on being gay as a mental illness?
    Doctors are manipulated and compromised by Big Pharma and Big Money.

  10. freewaydog says:

    I think this is all, to say the least, disgusting & barbaric. I am struggling to get sevices as it is & now I am hearing that I will be turned away even more.

  11. George Birbilis says:

    so more money could be targeted to people having real autism problem

  12. Lauren says:

    You can do something about this- from an e-mail written by Michael John Carley:

    “We understand that the APA has been asking callers to instead direct their complaints by email. We would urge folks to continue calling 703.907.7300…AND email the APA at both dsm5@psych.org and apa@pstch.org.”

  13. meb says:

    My child could lose her services due to this change. We struggled for years to find the diagnosis and services that could help her. She also suffered from Sensory Processing Disorder, OCD, and Anxiety. Her diagnosis of PDD-NOS helped explain the behaviors of rocking, tantrums, developmental delays and speech delays. We have paid for OT, Speech and Language Therapy, Social Skill Therapy and many other therapies out of pocket for many years. I am grateful for the services she has received in school and have seen much improvement because of them. I wish all the children who have been diagnosed with an Autism Spectrum Disorder nothing but hope and help. It saddens me that others discount my child and feel that they don’t deserve help. We need to continue to work together and not against each other.

  14. Linda says:

    This is just another breakdown in our society. 23 years ago when we where told our daughter was diagnosed with other health impaired we ask, “what the heck does that mean”, when she entered school at 6 we were told she will never read, write do math and we will instutionalize her in her teens. Well to sum up it didn’t happen because a whole generation of children coded other health impair now are coded somewhere on the autism spectrum and parents and others rallied and fought for these kids. It has been 23years of fighting for our child. Now I’m seeing everywhere in our society the same bias I saw 23 years ago. So parents, we fought the schools and the government to get help for our children help, so we can do the same thing with the American Psychiatric Association and the special interest groups that drive them–don’t give up the fight our children are worth our efforts. You folks who fell you may have to homeschool do it – the NEA has no clue they are only interest in there needs not the needs of your child.

  15. Barb, Eric's mom says:

    I don’t have a problem with the definitions at all. My son will still qualify and he has severe Classic Autism. I for one am tired of fighting for services when there is only so much money to go around and it seems like currently those “high functioning” individuals are getting the press and a lot of the money as they are more vocal. It makes me sad and angry when I see highly verbal intelligent people who have some preoccupations with numbers or statistics (for example) get all kinds of therapy and intervention while we are struggling to get similar supports to deal with lack of speech, echolalia, self-abuse, cognitive impariments, severe sensory problems, severe repetative behaviors, preoccupation with routine, etc. Those of us who are dealing with more severe disabilities have largely been shoved into the background in favor of the “disability of the month”.
    I think they have taken a big step in identifying an actual disability verses abnormal or quirky behavior. Just MHO.

  16. Joan Sullivan says:

    The term “Autism Spectrum Disorder” was chosen due to the incontinuity of traits found in each individual diagnosed. For some with Autism, even one trait can be dibillitating. The best chance at success for those with a diagnosis is “early” intervention. WE ALL NEED TO COORDINATE A TOP NOTCH PRESENTATION FOR THIS SPRING WHEN THE AMERICAN PSYCHIATRIC ASSOC. OPENS ITS SELF FOR ADDITIONAL PUBLIC COMMENT. Don’t underestimate the interest insurance companies have in this proposed change.

  17. Lesa Rader says:

    Follow the dollars. You can smell the medical insurance companies’ stink all over these proposed changes. Nothing will get done until there is legislation and money and lobbyists for our side.

  18. Yankeegirl says:

    The title should read: “New Autism Defintion could Leave Many childen Without Needed Services”

  19. Ohio Mom says:

    fairlady68, the Fred Volkmar quote wasn’t given enough context here. He was on the DSM committee that was reassessing the autism definition until he quit in protest over these proposed changes.

    He then put together a study to show how many would lose their autism diagnosis and that study is what triggered the New York Times article, which in turn is leading to the widespread attention the proposed changes are getting (which includes this posting). Interesting enough, his study showed that many with more involved symptoms might also lose their dx. I suppose they might be given an Intellectual Disability dx (MR) instead.

    In short, Volmar was being sarcastic.

  20. Daily Woman says:

    Sounds like a cover up to me. They dont want to find out the real “cause” so they decide to change the book so parents will stop because we will no longer have a epidemic. It will no change anything for us since we dont receive services anyway since we homeschool but I just think they have motives to this change that arent meant to benefit our kids.

  21. Jack Daly says:

    I expect we will see more and more of this as things develop. The closings of state institutions here in Indiana due to cutbacks are creating amazing ‘miracle cures’ as we speak….and putting people ill-equipped to deal with the demands and stresses of life in the community on-the-street….where they now become the problem of the legal system et al.
    So how do we stop an ‘epidemic’? Re-define the illness…Voila! Cured !!

  22. Cathy says:

    Let me get this straight. Didn’t the FDA approve vaccines that are suspected to cause the autism epidemic. Now, the govt. does not want to pay for treatment for autism?

  23. Sonja L says:

    It’s not (and never has been) an “epidemic” – you can’t “catch” autism from someone like it’s a virus. To make that statement is alarmest at best. Better diagnosis and understanding of autism has caused an increase in the population. These people were formerly identified as Intellectually Impaired (formerly “rerarded”) and placed in “special homes” with no attempts at early intervention or treatment to facilitate improvement. It’s a neurological condition. One that, with proper therapy and intervention, can improve a person’s ability to have a meaningful, productive life – many times contributing to society as opposed to becoming a “burden” in a “special home”.

    That being said, Michael John Carley, Executive Director of GRASP, has created a petition to protest the proposed changes that I urge all families and friends to sign and share.

    Let the APA that people with Aspergers should be involved with the discussion.

  24. Gail H. says:

    I agree with Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership, that there will be a possibility of services being denied to those in the autism disorder spectrum. I have a grandchild who is in the high functioning end of the spectrum, but with many learning problems requiring an iep in school. Without the diagnosis, it would have been a fight to get her into special education because she is viewed as “defiant” until people understand her disorder.

  25. Patricia Elaine Chandler says:

    This is, most profoundly, an “Insane” attempt to avoid responsibility and “keep the money for overhead”. Last year, the Senate H.E.L.P. committe met to decide where 693 million dollars, earmarked for Services for People With Developmental Disabilities, would go; Autism Speakes was front and center. We need to Work Together, like never before, People For and Against Autism, becasue that is what it is truly about. This year, we are finally going to see the true Numbers in terms of People, whether Children or Adults, who are Autistic. We have too many labels. Autism is Autism, no matter the Age. I Know. I was Born Autistic, and labeled by the good family doctor, as “partially mentally retarded” and I wasn’t expectedto be able to learn, much less Speak. I began speaking the year I turned 7 and in 1998, my IQ measured at 139. Today, it is between 139 and 169 and I Am STILL, Autistic. I thank God I Am Autistic and I hope we Never find a “cure”, because there is absolutely nothing Wrong with Me. I worked for Big Pharma, Big Biotech, Big Med Device and Big Healthcare/Managed Care, ie. 3rd-party Insurance companies, from 1985-2008, where they used me up and then rightly called me a Guinea Pig to my face, no lie (Chris McDonnel, the Sr. Director of Clinical Data Management, at Forest Reseach Inst. in Jersey City NJ in September 2008). It took me 20 years to “cure” my OCD, myself. I entered College, Hunter College of NYC in September 1981 and today, I am enrolled in my 7th academic institution of higher learning, STILL working on my bachelors degree. I went through 4 majors (psych, comp sci, math, busn mgmt) and now back to Psych, where, no matter how long it takes me, I am going to achieve my bachelors, masters and PhD in New Psychology, to teach at Stanford, AND create, build, own and run a National Autism Foundation, for Children and Adults, to Finally prove all these “OLD Institutions and Medical Professionals, and “Special Interest Groups”, and Insurance Franchises and money-motivated Unempathetic Individuals Wrong! Plain and Simple. My fanily doctor is deceased and the hospital where I was born is no longer in operaton, plus, My Birth Records, Delivery Records were “supposedly” destroyed in a fire. I am going to 49 years old this year and my existence thus far, will Not be negated, by Anyone or Entity! I am doing and building something New, so that no Child ever has to grow up like I did, ever again! We need Individuals who are on the Spectrum, to Speak Up and OUT! Plain and Simple! I did last year, and I payed “H#*l” for it, and I am prepared to do it again and for the rest of my Life, Now that I can Speak! I Am AUTISM, Speaking Louder Than Ever Before! Copyright (c) 2011 Patricia Elaine Chandler ……. I am part of Dr. Lynda Gellers ‘Autism Spectrum Services’, in NYC and I am Finally receiving my Adult Diagnosis for Autism, and I Am truly Grateful! I am no longer ashamed of Who I AM. I am going to Washington. When and how, who knows, but I am Going, for the Children and Adults on the Autism Spectrum.

  26. brie says:

    finally , i cant tell you how much it hurts the low functioning kids /adults/ and families that really have the autism , it makes me so mad when my child will never work or dress himself or eat normal food claps and spins and yet people who are college bound , have real jobs , can drive , get married , can live alone , yet the only part of there lives is they are not very social are grouped in the autism group , adhd kids have the same problem and are not social , and doesnt understand the social norm , but do they have autism no , my daughter still gets help in school , and evtra aide in class , extra time on tests , as for the social part i will teach her and i started a social group in her school .

  27. bjv says:

    Advocate, advocate, advocate. My experience with two special needs kids, neither diagnosed with ASD though I think one may be on the spectrum, is that a child doesn’t need a diagnosis to get an IEP and services. Parental involvement and advocacy is critical. If they don’t come up with a diagnosis but have social, emotional and behavioral challenges and the parent advocates for their child, they will get services. My son was lumped with “learning academic behavior” kids and I fought to get him the emotional supports he needed. Our ultimate diagnosis was Other Health Impairment and Emotional Disability. This served him sufficiently. Note, his friends are ASD, his quirks appear on the spectrum, but no diagnosis. He graduated HS with a 1.7 GPA, is in college part time with no accommodations and no meds, and performing above 2.0, landed a job (with accommodations) and a girlfriend and is flying high for the moment. I am so thankful. My daughter, all emotional disorders with no inkling of ASD, has needed more accommodations and services, including residential treatment, than the other all based upon attention getting behaviors. Both children would have been left to languish with the behavioral kids if it wasn’t for constant advocacy.

  28. Jerry says:

    Last year we had a young man work with our son who is diagnosed with autism. As time passed I realized the young man had high functioning autism…I could tell as he could not figure out how to get to work on time, thought nothing of taking time off (told us when he would be gone but didn’t ask…no understanding of our needs), could not stay focused…yet he was able to drive, ask questions, attend college (but couldn’t keep up with the note taking). His parents had never told him (I think they have high funtioning autism too as he said his father had a difficult time getting to work on time too but his company didn’t care because he was an engineer and they needed his expertise). So this young man is not able to get and keep a job (even delivering pizza). What do you think his life experience is going to be?

  29. Doug B says:

    Follow the $ and see who is really behind this.

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