Home > Science > The Changing Definition of Autism: Critical Issues Ahead

The Changing Definition of Autism: Critical Issues Ahead

Posted by Autism Speaks Chief Science Officer Geri Dawson, PhD.

Many in our community are understandably concerned that a planned revision of the medical definition of autism spectrum disorder (ASD) by the American Psychiatric Association (APA) will restrict its diagnosis in ways that will prevent many persons from receiving vital medical and social services.

Before I catch you up on some of the details behind this revision, let me first say that although the proposed changes have a solid scientific rationale, we at Autism Speaks are likewise concerned about their effect on access to services. It is crucial that these changes don’t result in discrimination against people who are struggling with autism symptoms.  As the APA moves forward in formalizing the new definition, we urge that this issue be kept at the forefront of the discussion. As the changes are implemented, scientists, families and providers will all need to carefully monitor its impact on those affected by all forms of ASD. The bottom line is this: We must ensure that all those who struggle with autism symptoms get the services they need.

Now let me provide some background.

The APA is currently completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in 2013. The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. As such, it influences availability of treatments as well as insurance coverage.

An expert panel appointed by the APA has proposed that the new version of the DSM change the current definition of ASD, in part because of shortcomings in how it is currently used for diagnosis. The new definition would do three things. First, it would eliminate the previously separate categories of Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS) from the diagnostic manual. Second, it would fold these disorders, together with “classic” autism, into the single category of ASD. Finally, it would change the criteria for diagnosing ASD.

Under the current definition, a person can qualify for an ASD diagnosis by exhibiting at least 6 of 12 behaviors that include deficits in social interaction, communication or repetitive behaviors. Under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors. The APA has also proposed that a new category be added to the DSM – Social Communication Disorder. This would allow for a diagnosis of disability in social communication without the presence of repetitive behavior.

Based on a recent study, some experts are suggesting that many individuals who currently meet the criteria for ASD, especially those who are more cognitively capable, would no longer meet criteria for ASD. If so, the new criteria would result in discrimination against people who are more cognitively capable.  We are concerned about this and will do all we can to ensure that all people who are struggling with autism symptoms retain the services they deserve.

As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.

It is important to keep in mind that this revision in the medical definition of ASD is not just an academic exercise. These changes in diagnostic criteria will likely have important influences on the lives of those in our community who critically need services.

[Editor’s note: Please see the Autism Speaks policy statement on the DSM-5 revisions and a related FAQ here.]

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

  • Then, please join us for a live web chat at 3 pm Eastern with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring – click on the tab on the Autism Speaks Facebook page to join in!
You can read the full Chat Transcript here.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

Vodpod videos no longer available.
  1. Karen Field
    January 20, 2012 at 4:51 pm

    Thank you so much for addressing this issue. My grandson ( almost 14 years old ) has Asperger’s and I think the diagnosis was “Autism ” at age 10 years.
    I’m very concerned about his services, after just hearing about the diagnosis change, on the news yesterday.
    Please let me know what I might do to help
    Thank you Karen

  2. hpreston44
    January 20, 2012 at 5:38 pm

    Why in the world would you want to “dumb down” the autism diagnosis more?!? It’s already overarching and completely devoid of any differential process. When someone has cancer, doctors actually specify what type of cancer the patient has — with our children, we apparently need to label them with a huge, and often stigmatizing, label that often cannot be erased. I couldn’t disagree with you more if I tried. This is a huge disservice to our children.

  3. bamuni
    January 20, 2012 at 7:23 pm

    To the leadership of Autism Speaks –
    You are coming off as apologists for DSM revisers — this is outrageous. Take a cue from The Arc (see below), which put out a media statement condemning the changes for what they are – changes that put people’s lives at risk, not something we’ll all need to “monitor.” Please. This is an unconscionable effort to throw hundreds of thousands of truly impaired people with ASDs overboard — a giant step backward for people with this disorder. It is unfathomable to me that you are not advocating more forcefully and decisively ON BEHALF OF the thousands of individuals who are about to have the rug pulled out from under them. Isn’t that what Autism Speaks stands for?

    Washington, DC (PRWEB) January 20, 2012

    The Arc’s response to the latest news regarding the American Psychiatric Association’s work on revisions to the definition of autism.

    The unintended consequences of a diagnostic definition change could potentially limit access to the services that children and adults with autism and P.D.D.-N.O.S. need.

    The Arc is the nation’s largest and oldest human rights organization for the people with intellectual and developmental disabilities (I/DD), serving more than a million individuals and their families including people with autism, Asperger’s syndrome, and pervasive developmental disorder, not otherwise specified (P.D.D.-N.O.S). In response to the news that the American Psychiatric Association is working on revisions to the definition of autism, The Arc issued the following reaction:

    “Over the last decade, we have made major strides in ensuring that people diagnosed with autism, Asperger’s syndrome, and P.D.D.-N.O.S. have access to the services that advance their health, education, independent living skills, and work skills. These efforts have increased inclusion in educational settings, and in society, young adults with disabilities are gaining life skills that can lead to jobs and independence. The unintended consequences of a diagnostic definition change could potentially limit access to the services that children and adults with autism and P.D.D.-N.O.S. need, potentially putting at risk their education, and the health and economic stability of their own lives and the lives of their families,” said Peter V. Berns, CEO of The Arc.

    • Gilberto M
      January 25, 2012 at 1:14 pm

      Very well said!

  4. David C
    January 20, 2012 at 9:01 pm

    If you continue to support the changes in the definition of autism with the expectation that you can change the result afterwards, you are counting on a political solution to what is already an enormous issue that insurance companies are actively fighting against everyday. It is naive to think that Autism Speaks will be able to influence this process afterwards. I quote:

    “As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.”

    The Autism Speaks organization is acting in a fashion that will long term have terrible repercussions with the hope of being able to fight the good fight sometime later down the road. That is completely ignorant of the political realities in America and of how insurance and big pharma companies will always act in their own self interest.

    Autism Speaks should be rallying support to stop these changes. Science based on a data from a study in 1993 does not reflect any of the explosive and very sad growth in real children impacted over the past 10 years. Get your head out of the sand and fight this reclassification with all your might. The child whose future you save might be your own.

    • Jen
      January 22, 2012 at 2:09 am

      definitely !!!!!!!

    • Jenna Smith
      January 26, 2012 at 10:16 am

      Totally agree. Autism Speaks’ position on the revisions is reprehensible and extremely naive. How many children will be lost while you “monitor” the situation?

  5. Monique from CA
    January 21, 2012 at 12:35 am

    It’s outrageous that Autism Speaks is taking the “wait and see” attitude about the change in dx criteria. They even suggest that this move is somehow justified. The classification of PDD-NOS and Asperger’s is already separated into a different category. There is no need to kick them out of an ASD diagnosis. Then they would be given no rights under the law because they would then be assigned to a “new” category with no proven method of treatment. How long did it take for the ASD community to assure their children a consistent type of treatment? Longer than my child can wait for services! How dare they decide that they can take his dx away along with treatment! What do they think the school districts and Alta are going to do?! They are going to deny my child services along with all of the other children who are like him. Because there is a budget crisis and where they can save, they will. So who is going to pay for his services? Not my insurance, they will not be obligated under the Autism Insurance Reform bill – that I, and parents like me, helped get pushed into law. We will probably lose our house trying to make sure that he gets what he needs. We already have a district that doesn’t even want to follow his IEP, much less give him services for a dx that has no proven history of treatment. Obviously the psychologists are in league with the insurance companies and any of the other entities that provide services to ASD children. Ignoring a group of children/adults that has ASD symptoms does not make Autism go away. You are just negatively impacting them for the rest of their lives. Shame on you Autism Speaks on your current stance.

    • Lola
      January 24, 2012 at 1:45 pm

      I totally agree!

  6. Sarah
    January 21, 2012 at 8:40 am

    If its not “autism” what is it? Now parents have to fight even harder with schools, doctors and insurance companies for every service because their kids no longer meet the criteria? Some issues our kids have are more subtle at an earlier age but can become more pronounced as a child gets older. I think this is going to leave a lot of kids in medical limbo. Not fair to the parents or the kids. Also what solid scientific evidence do they have to distinguish a child with autism and one without. is there a blood test?

    AS, we need you to fight for services not to assess it impact on our families ..ithe change will impact many families that’s a given.

  7. Debra
    January 21, 2012 at 9:08 am

    We can not let this happen……to many of our children will fall through the cracks in the floor.

  8. krystal
    January 21, 2012 at 4:06 pm

    Does this mean that all previously diagnosed with Autism, not PDD-NOS, or Asperger’s syndrome, would have to be reevaluated by a psychologist? My 3year old son was diagnosed with Autism this year. He displays several characteristics however, his cognitive skills are very good which I am thankful. When I read the new DSM5 it also addresses sensory which my son greatly suffers from and the DSM4 doesn’t address sensory as a category. The new DMS5 fits him better but his cognitive skills are great. I’m puzzled.

  9. January 21, 2012 at 5:40 pm

    I cannot figure out what is supposed to happen to all those who have been diagnosed and are making progress under the current guidelines. If they no longer qualify for services, even those services that help with daily living. If this panel gets there way what happens to all of us who love someone on the spectrum. It is ridiculous to think someone “higher functioning” should be discriminated against. Please keep up the work and let us know when we can sign a petition and where we can help!

  10. Jen
    January 22, 2012 at 1:56 am

    This is very disturbing that “autism Speaks” agrees with the change when your suppose to be advocating.I would like to know who is going reimburse the parents for all the money they have paid to institutions and health insurances specifically designed for children and adults who have been diagnosed with Autism – who will not have Autism – because of the DSM changes.Oh and what about the “Combating Autism Reauthorization Act ” that congress recently renewed Autism and Aspergers are both in that bill for research funding until 2014.This change needs to be fought against – and science research in Autism needs be more transparent.

  11. Sammy
    January 22, 2012 at 9:58 am

    Hello, I’m too so outraged that an organization such “Autism Speak” is taking this approach when so many children, adults and their families will suffer horrible consequences . It’s already difficult to get the needed services and again all of this for what? to save money for the insurance companies ? it’s very obvious who is behind the APA. For years , I have been supporting “Autism Speak”.It is time that “Autism Speak” supports all the people that will be negatively affected forever. Please let’s do something now!!!.

  12. Ann
    January 22, 2012 at 4:05 pm

    My daughter would definitely be reclassified as “social communication disorder” since she does not have any repetitive behavior issues. But she had very pronounced delay in her speech development and joint attention ability. She has benefited immensely from being in an “autism” preschool program. Would kids like her in the future not be allowed to benefit from these programs?? What happens to all the kids with “social communication disorder”. Obviously, they benefit greatly from ABA/VB skill building for their communication and social skills, as well as for any cognitive skills. Repetitive behavior is just one aspect…why is it being treated as a more important distinguishing factor than all the other aspects. I have long thought there needs to be more discrimination WITHIN the autism/PDD diagnosis of the subtypes, but I am very concerned that kids with “social communication disorder”, who seem to respond very very well to ABA/VB early intervention, will lose out.

  13. January 22, 2012 at 6:15 pm

    I have a 22 yo daughter with Aspergers who was diagnosed at 19 after she could not “say” no to a guy who molested her. She had other symptoms that were overlooked because she smiled and was “pleasant.” But in fact she was disconnected and noone could understand till finally a diagnosis brought her into our world. And this diagnosis safed her life and our familys. At her worst we couldn’t go anywhere with her for over a year – lights, sounds and stimulation were too hard for her. Her diagnosis gained her the life-saving services that have given her treatment for 3 years and assisted her to speak and even work part time. She is considered high functioning autism – or Aspergers and this diagnosis will never exist?!

    Now I am scared to death that her services will be taken away from her! Her dad and I now can go to work and she has services – we can keep our jobs.

    Today I wrote to the DSM Task Force – yes all 29 members! These are the 29 doctors who are writing the Aspergers diagnosis out of existence. I don’t think one of them has a child on the autism spectrum or they would not do this! The website for their information is: http://www.dsm5.org/meetus/pages/Default.aspx. After reading the 29 doctors bios, I noted only ONE of them has any experience with developmental disabilities listed: Susan Anderson-Swedo who is listed as a member of Autism Speaks. Additionally, 23 of the doctors are directly citing their connections to major drug companies (only 6 do not list such a connection).

    It appears the rewriting of the DSM (Diagnostic and Statistical Manual of Mental Disorders) is a rewriting of a true life story so that the story has an untrue ending and the facts go away. This rewriting will change the story of 1 in 100 diagnosed with autism (this is not their desired story) as they effectively end this autism surge (see Dr. Fred Volkmar article in the NY times at http://slatest.slate.com/posts/2012/01/20/dr_fred_r_volkmar_new_dsm_autism_definition_harmful_.html .

    This scientific community is determined to NOT look at the cause for the epidemic of autism in our society, but instead change the diagnosis so that autism is not really autism. Many will suffer for this change. But the worst will be everyone diagnosed with Aspergers.

  14. Paul G
    January 22, 2012 at 11:36 pm

    So. Aspergers and PDD-NOS are both gone and a generic ASD diagnosis replaces them. But only if the individual exhibits a seemingly random number of symptoms. Whoops, sorry, not enough repetition, you’re out. Oops, did you just make eye contact? You’re cured!

    Well, the Bronx ain’t Brooklyn, and Aspgerger’s isn’t PDD-NOS — and neither of those are “classic” Autism. People who need services are going to get left out in the cold.

    It seems darn coincidental that this is happening right on the heels of so many states passing legislation requiring insurance carriers to cover Autism. Suddenly, less people have autism! Problem solved.

    This is not a time for wait and see — this is the time that Autism Speaks.

  15. Kathi Magee
    January 23, 2012 at 10:15 am

    This is a rather desperate and irresponsible attempt to reduce the incidence of ASD. It is the equivalent of re-defining Melanoma as a “skin disorder” simply to reduce the cancer rate.

  16. Cheryl
    January 23, 2012 at 10:45 am

    This is the way psyciatric and developmental as well as medical issues have always been dealt with. It is all done in the name of “science” and advancement in research. What it is really all about is MONEY and POLITICS. I have a 6 year old on the spectrum. If the new criteria is set, he will be off the spectrum. How is it possible through the writing of a “collection of symptoms” a child’s life can be changed? I am a Ph.D. Psychologist and was taught that the DSM is a “reference manual” It takes skill, judgement and education to utilize it correctly. We cannot let a few “experts” and a book set us back 50 years when it comes to those who have an ASD. The numbers were 1:1000 now they are 1:110, instead of looking at the causes it is easier to change the criteria we use for the diagnosis. Breast Cancer is on the rise. Is it really, or are the detection methods just better? Would the medical, insurance and political field stop mamograms because the numbers are too high. This is exactly what is happening with ASD. The numbers are too high, so change the criteria. I am currently fundraising to open a school for children with severe Autism in a rural area where there are no services. This will only lessen our chances of success, as our numbers diagnosed will decrease. I will do everything possible to help those touched by an ASD including addressing it on the Political level.

  17. Michele
    January 23, 2012 at 11:44 am

    I’m a long time supporter of Autism Speaks. However, I have to disagree – violently – with this “wait and see” approach. We have fought too long and too hard for recognition of the issues our families face daily to “wait and see” if our family members will be left in the cold with the new diagnostic criteria. Trying to fix this potentially devestating mess retroactively could take as long – or longer – than it took us to get where we are today. We need to be moving forward aggressively with supports, services, and recognition for our community, not sitting back and adopting a “wait and see” approach to a potentially huge move backwards. I am begging you to not prove Autism Speaks’ harshest critics right when they paint us as a “do nothing” organization. We need a strong, united stance on this and we need it now.

  18. January 23, 2012 at 1:45 pm

    I think that Autism Speaks misses the significance of the issue and immediate, negative impact to children who will no longer qualify for the intensity level of ABA and other related services needed that are by law only available to those with the diagnosis of autism (state laws do not cover intensive services such as ABA for these other new diangoses nor will they any time soon). Taking a wait and see approach does not address the shortcomings of the DSM committee’s research and forethought about the real-world deleterious effects of potentialproposed changes. Their recent press release does not address the key question of how many individuals who meet the current criteria for a diagnosis on the spectrum will meet the new criteria and what impact not meeting those new criteria has on the individual in terms of service availability and treatment outcomes over time. Taking a wait and see approach will likely result in a generation of children missing out on critical services during critical developmental periods while the laws, school districts, and public policies catch up with the new diagnostic criteria and those left out. These important scientific and public policy questions have not had adequate answers from the DSM committee and I think that Dr Volkmar’s announcement of the potentially significant impact of the new criteria should help drive Autism Speaks and others to push the DSM committee to re-open the discussion of the poroposed criteria and the need to get more answers before making formal changes. I hope Autism Speaks reverses it’s wait and see approach and engages the DSM committee from both a scientific and public policy perspective. I am a parent of a child with autism and a I have been a Behavior Analyst for much longer so I have seen the struggles from multiple perspectives and I think that now is not the time for a wait and hope approach. That approach has too many negative consequences for kids like my son and is not in keeping with the tradition of Autism Speaks.

  19. K. Alsup
    January 23, 2012 at 4:38 pm

    Thank you for identifying the differences between the old and new DSM diagnosis for Autism. It looks like my son may be disqualified for this Diagnosis (he is currently considered Asperger’s). It depends on whether they classify repetitive use of language with the repetitive and stereotyped patterns of behavior. Currently, he exhibits six criteria in social interaction and communicative language (including the repetitive use of language), but only 1 repetitive and stereotyped patterns of behavior. He will never be able to hold down a job due to his repetitive language issue (he has a tendency of repeated repetition of name-calling or cuss words just to hear them come off his tongue) let alone his other issues that make him ill-prepared for the real world (Ex: if he has a car key to a ’95 Chevy, he doesn’t believe it is ‘stealing’ if the key works in someone else’s car lock)! This is VERY CONCERNING!

  20. January 23, 2012 at 4:44 pm

    I am appalled by the lack of advocacy by Autism Speaks on behalf of those with higher functioning autism (ie. Aspergers syndrome and PDDNOS). I thought Autism Speaks existed to speak out for those who cannot speak for themselves due to these devasting illnesses. What is the mission statement!

    So far, the replies from Dr. Lawson are more of a PR conference aimed at silencing and placating the families and true advocates of those on the autistic spectrum.

    Why isn’t Autism Speaks advising families and loved ones of those with Aspergers and PDDNOS how to fight the erasure of the diagnosis! This is an emergency.

    As a parent of a daughter with Aspergers I need an advocate to come along side and help fight, not tell me to wait and see if her services “decline” after her diagnosis is gone.

  21. Ilyse Levine-Kanji
    January 23, 2012 at 4:58 pm

    I wrote an article that was picked up by CommonHealth, National Public Radio’s science blog, about my family’s experiences and the potential new definition of autism.

    • diane
      January 25, 2012 at 12:37 pm

      Excellent article …
      Send to the dsm panel


  22. Kelly
    January 23, 2012 at 10:40 pm

    I find this article disgusting. For an organization that supposedly supports the benefits of early intervention to take a “wait and see” approach is shameful. If Autism Speaks does not “speak” now, when exactly would it? They are the most popular Autism “Advocate” group out there in my book. I SINCERELY regret all my past donations to this organization and I will not be making any in the future.

  23. kg
    January 23, 2012 at 11:24 pm

    In the spring of 2011, my son, who was first diagnosed with Asperger’s 6 years ago, had his brain mapped through the use of an EEG. The neuropsych told me that his map exhibited a classic pattern of Asperger’s, but not an autism pattern. He told me that some people have both patterns, and others one or the other. My first thought was of the proposed changes to the DSM! Clearly, this must mean that there is emerging science that the disorders are unique. I am concerned that the proposed collapsing of the definitions will cause a reduction in research on Asperger’s.

    • January 24, 2012 at 1:13 pm

      KG, thanks for your post. They claim there are no definitive tests for Autism but if they can map the brain and tell the difference between Aspergers and Autism why aren’t they using this test to screen for autism. You had this done in the spring of 2011 do you know how long they have been doing brain maps using EEG for this purpose? Obviously long enough that they can tell the difference in the two. If they can tell the difference between Aspergers and Autism they can tell the difference between neurotypical and Autism and/or Aspergers and most likely PDD NOS. Curious did your insurance pay for this?
      There are also two different diagnostic tools used to gather data on frequency of behaviors exhibited in children expected to have autism. The GADS(Gilliam Asperger’s Disorder Scale) and the GARS(Gilliam Autism Rating Scale). My son who has Aspergers would score low on the GARS but scored high on the GADS. Clearly a difference between the two. I agree with your concern on the reduction in research for Asperger’s and PDD NOS the other category which will be dropped.

  24. Alvin
    January 24, 2012 at 8:13 am

    You have to wonder whose side Autism Speaks is on – this is definitely not a neutral position. Do the giant Insurance companies now have influence with Autism Speaks? This adds a new (and extremely important) layer of hurdles for families to deal with.

  25. LS
    January 24, 2012 at 10:49 am

    Your response to the proposed DSM changes is very upsetting. This is why I do not support your organization. It is deeply upsetting as a parent that an organization with your level of presence and power chooses to “respond” this way. Who are you fighting for? Because it isn’t children with Autism.

  26. Lola
    January 24, 2012 at 1:44 pm

    How can Autism SPEAKS be so wimpy with it’s response to this??? We NEED you! We parents can’t fight these changes if you don’t step up and help us. You are throwing our kids away, just like the DSM5 committee is. I would be ashamed if I were Dr. Geri Dawson…you need to get out of your ivory tower and realize the insurance company lobby WANTS to keep our kids from qualifying for services they desperately need. You are making things worse!

    My child has PDD-NOS and will likely NOT be elligible, under the recently release REVISED definition for Autism, for the very vital services she needs to thrive. My daughter will be entering Kindergarten this fall and I have no idea how she can succeed without some services to help her. She has poor concentration, developmental delays and sensory integration disorder issues. Under your new defintion, when she is older she won’t qualify for these services. We NEED the Autism Spectrum diagnosis to include the high-functioning disorders so that our kids can OVERCOME their issues and thrive.

  27. Mitchell Silvers
    January 24, 2012 at 8:43 pm

    I spoke with the American Psychiatric Association today. They are definitely taking comments on the new DSM 5. The DSM 5 will be consolidating Aspergers Syndrome and PDD-NOS with Autism. They are also tightening up the diagnosis. They are taking comments at dsm5@psych.org.

    So please send them e-mail with your personal history and how losing the Autism diagnosis will affect your family member with Autism and your family.

    I would like to see the above organization contact their members urging them to take a stand on this important issue !

  28. J.H
    January 25, 2012 at 1:32 am

    I think Dr. Dawson gave an exceptional well thought out response. It would be both unwise and reactionary for Autism Speaks to attempt to influence the DSM-V process. The best course of action for institutions and organizations opposed to the intended changes in the DSM-V is to gather verifiable research to support their position and speak out when the appropriate time comes.

    Parents and Self-Advocates have their own unique role to play IF the final changes in the DSM-V clearly has a negative impact on the Autistm Community. IF it comes to THAT, everybody involved needs to come out like they did for president Obama’s 2008 presidential campaign. Si ,Se puede !!!! Si, Se puede!!!! Si, Se puede!!!

  29. Roseann Sykora Brower
    January 25, 2012 at 1:54 am

    I know adults with Aspergers who are highly cognitive, but either could not take care of themselves very well, or possibly be dangerous to others at times.

  30. bob watson
    January 25, 2012 at 1:05 pm

    You have got to be kidding me. Could you possibly cow to the insurance companies any more. I help raise A LOT of money for AS and thats going to come to an end NOW if AS doesn’t fight this. I know they get a lot of money from the federal govt for research, and this is coming directly from insurance company lobbyists. How dare the medical community get involved.They don’t even teach about autism in medical school. Stick to over billing and kickbacks for needless prescriptions.

  31. Kathi Magee
    January 25, 2012 at 1:21 pm

    J.H., while I admire your optimistic attitude, Autism Speaks is the advocacy group for autism and needs to play a pro-active role in addressing the concerns of those who could be impacted by this. Each time we participate in a walk or fundraiser we are raising money to support this advocacy group who’s mission clearly states “Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action…” The time to speak up is PRIOR to the intended or proposed change going into effect, and not after the damage has been done. I would hope that the collective group of comments on this blog will encourage the leadership at Autism Speaks to step up to the plate and strongly advocate for the children and families that will be impacted by this proposed change. Perhaps you should look up the statements made by Dr. Fred R. Volkmar, who was on the panel of experts at the APA. He resigned when he realized that no one was considering the far reaching effects this would have on those with PDD-NOS and Asperger’s Syndrome, who could lose services as a result. As the parent of a child w/ Asperger’s, who struggles daily with social and communication deficits, in addition to sensory and auditory processing dysfunction; I cannot imagine how detrimental it would be for him to lose his diagnosis and ultimately the services he requires. With the current dx and services my child at least stands a chance at being self sufficient and self-supportive one day. If he were to lose that, the rest of society would have to support him for many years to come. Our children are not disposable. Removing their diagnosis does not remove them from society. The only thing this change will do is give the illusion that the rate of autism has decreased.

  32. diane
    January 25, 2012 at 5:02 pm

    I agree with Ms magee. I am sorry but I have to wonder if J.H. has real experience with a family member who is diagnosed on the autism spectrum. I don’t think so. Marriages are at a 50% chance of divorce due to the stress and caregiving. Families are fighting to remain intact . When finally we finally get some assistance we begin to breathe and pick up the pieces…….we cannot lose this assistance.

  33. Jeremy Hammock
    January 25, 2012 at 6:53 pm

    Yes, THANK YOU so much for your persistent efforts to fight for our cause to help improve the quality of lives of children with ASD. We certainly need your help. My son is high functioning but retreats without his occupational and speech therapy which CHIP took away from us.

  34. Diane
    January 25, 2012 at 7:14 pm

    I just joined ARC because their CEO has taken a stand against the DSM-5 rewriting that excludes Aspergers and PDDNOS.

    Thank you, ARC.

  35. Mitchell Silvers
    January 26, 2012 at 12:06 pm


    We have our petition online just now. Please forward to anyone and everyone concerned who is at risk of losing special education, services, or self-esteem. Click here to sign.

    Note: Medscape today released an article in which DSM-5 Committee member, Dr. Brian H. King, disputes the fears by saying “I think it is very unlikely that there’s going to be a group left out in the cold” However, other Committee members such as Dr. David J. Kupfer (in the New York Times) and Dr. Catherine Lord (in several media appearences) have indicated the opposite. Whatever is going on, from our vantagepoint, could be good.

    Please keep up the pressure by signing, forwarding, calling the APA at 703.907.7300 (every day—for many of you, it’s worth it), and emailing them at dsm5@psych.org or apa@psych.org. Visit our Facebook page for current and prior articles on this issue

    Text of the petition is as follows:

    DSM-5 Committee: Don’t Reduce the Criteria for an Autism Spectrum Condition in the DSM-5

    Why This Is Important
    WHEREAS . . . we, as adults and teens on the spectrum (as well as we, their loved ones) do not want to return to the days prior to the DSM-IV, when most of our (their) behavioral differences were thought of as character deficits
    WHEREAS . . . the DSM-IV did not (as has been stated) financially drain clinical or government resources; on the contrary, the DSM-IV, in a big picture sense, actually saved money given the long-term cost of (a) children who if not educated properly would cost more in services later on, and who because of their appropriate education could be productive citizens as adults, and (b) individuals who by knowing who they were had their capacity for anxiety, depression, or anger lessened—thus decreasing incarceration and homeless rates and reducing their dependence on others to lead productive lives
    WHEREAS . . . The DSM-IV did the world great good by broadening the criteria, thereby expanding our notions of behavioral pluralism and increasing the self-esteem of innumerable individuals: Furthermore, without the DSM-IV there would most likely not be anti-bullying campaigns; (given two wars since) the much-needed increase in attention to Post-Traumatic Stress Disorder; and a multitude of other, big picture improvements for us all
    WHEREAS . . . autism spectrum diagnoses are not “over-diagnosed,” especially given our still-limited understanding of how these conditions manifest in women; and how many under-represented, economically-challenged communities (especially belonging to minority groups) still have not been properly evaluated
    WHEREAS . . . the proposed changes to the DSM-5 contribute to the emotionally-destructive “competition of suffering” (between opposite ends of the spectrum) that the autism world was finally starting to back away from, wherein non-GRASP and non-like-minded entities often attempted to invalidate the seriousness of another’s experiences
    WHEREAS . . . the DSM-5 has attempted to implement these changes in bad faith by releasing news thereof at a time when they had no outlet available to the public for receiving commentary
    WHEREAS . . . the DSM-5 Committee’s autism spectrum experts seemingly carried no real expertise or experience with either (a) the end of the spectrum at risk with these changes, nor (b) adults; and we object not to the participation of these individuals but to the overall, and very poor composition of the Committee
    WHEREAS . . . the DSM-5 Committee’s attempts at damage-control (including many statements of “Well, your child may or may not qualify, but don’t worry. Wait and see instead.”) only furthers our confusion over what their true motivations could possibly be in implementing such backward revisions
    WHEREAS . . . the DSM-5 Committee is not beholden to, nor should they be guided by proven or unproven economic concerns whatsoever; that they should instead be guided solely by a concern over our mental and emotional well-being, which these changes dramatically threaten
    THEREFORE . . . I believe that the proposed narrowing of criteria for an autism spectrum diagnosis will cause catastrophic and irreparable damage to (1) the future of innumerable children on the spectrum who need specialized education, (2) innumerable parents with children receiving specialized education, (3) innumerable adults on the spectrum who are receiving services under the current criteria, and (4) anyone on the spectrum needing to know that their behavioral differences are the product of wiring, and not personal defect. Don’t reduce the criteria for an autism spectrum condition in the DSM-5.
    Click here to go to change.org to sign

    The folks at
    The Global and Regional Asperger Syndrome Partnership, Inc.
    666 Broadway, Suite 825
    New York, NY 10012
    p + f = 1.888.474.7277

  36. Sarah
    January 26, 2012 at 12:56 pm

    Listen up APA..

    Nancy Grace: Don’t change autism definition


  37. January 27, 2012 at 1:03 am

    So if this goes through and my child with Asperger’s looses his ASD diagnosis he will then too loose his IEP? Where does this leave children like him? Where do there rights go? DO we have to start all over?? Same for the PDD-NOS children… Do they then loose their services and their rights??

    • Kathi Magee
      January 27, 2012 at 10:32 am

      I completely share your concerns John. In our school district, where they look for reasons to cut services/programs, this is just the type of thing they need to disqualify a child for special ed svcs. This undermines all the hard work, time and effort that so many parents put in to obtaining an appropriate education for their children on the spectrum. If they lose their dx, they also stand to lose their school classification, the very thing that qualifies them for special ed services and supports. Some may end up being labled in other ways — behavioral issues, emotionally disturbed, or some other category that will not support their true needs, but I fear that the majority of students will be left to sink or swim — and ours will most certainly sink!

      When I think about all of the agencies that benefit from this change, as a result of the cost savings — the DOE and local school districts (special ed costs), Big Pharma, insurance companies, etc. Even the CDC benefits in that they will be able to say the autism rates have declined — I can’t help but wonder who is behind this. It would not surprise me to learn that the APA was put under pressure to re-write the language in the Autism description, specifically to reduce the incidence of Autism. We also have a segment of the population that is resisting vaccines because of the increased autism rates. That too, may factor into this. If the CDC and vaccine manufacturers can say that the autism rates declined, the CDC could then reach their goals on the % of vaccinated children and big pharma (vaccine manufacturers) can increase their profits as a result.

      What is sad is that all of this comes at a substantial cost to the most vulnerable people in the equation — our children on the autism spectrum. They are the only losers in this. They lose critical therapies, special ed programs and essential services to support their medical needs. We as parents are getting very good at advocating for our children and we need to ban together and fight this BEFORE the changes occur. Organizations like Autism Speaks need to stop caving into pressure from stake holders like the AMA, CDC, etc and truly stand behind the families they claim to support. This wishy-washy, wait and see approach is counterproductive and irresponsible on their part.

    • Mitchell Silvers
      January 30, 2012 at 12:50 pm

      In Georgia many Parents have paid an expensive professional fee for a official diagnosis not covered by insurance. This will probably mean that parents would have to pay more professional fees ???

      This is just plainly wrong !!!

  38. Robert Emerson
    January 27, 2012 at 1:55 pm

    As a parent of a more severely affected child with Autism, the proposed new criteria would most likely have no effect on my daughter. However, until very lately, New York State insurance companies were able to avoid coverage for practically ALL autism therapies. Thanks largely to AS, NYS now will be required to cover many such therapies starting in 11/13.

    I find it disheartening that after winning that battle, some families are now in jeopardy of losing what they have just gained.

    I hope that there are absolutely no ties between the people at APA who are recommending this redefinition and the insurance industry. The timing of this, just as coverage equality is becoming a reality throughout the country, personally gives me pause.

  39. Pam
    January 27, 2012 at 2:58 pm

    What kind of advocacy organization takes a wait and see position while the people they supposedly advocate for are screaming for action? If they are not representing the interests of the families of children on the spectrum, just who does Autism Speaks represent?

  40. January 27, 2012 at 11:25 pm

    Why are they changing THIS diagnosis? Let’s change the criteria for the Hard of Hearing too or Blindness too for that matter. (I’m being sarcastic.) What a disservice and a slap in the face for the future generation and the current generation. All the work and dedication down the toilet. :( I sure hope all parents can handle and do exactly what professionals are trained to do in increasing the adolescents and younger ones with PDD-NOS. :(

  41. Denise Miele
    January 28, 2012 at 10:27 pm

    I’m so worried! My son is a high functioning PDD child with Sensory Integration Disorder and I cannot imagine what would happen to him if we lost services!! How can I help to stop this??

  42. Melissa
    January 30, 2012 at 1:47 pm

    Please take a moment and consider signing and sharing this petition to preserve the availability of services for many individuals on the spectrum. It only takes a moment to sign and costs nothing to take a stand against this proposal that could hurt many: https://www.change.org/petitions/do-not-remove-aspergers-syndrome-and-other-autism-sub-types-from-dsm

  43. kerry
    January 30, 2012 at 3:13 pm

    i would love to sign a protest to prevent it from being harder to obtain services its hard enough as it is for families who has someone who has autism..

  44. Marina
    January 31, 2012 at 10:25 am

    I came across this article a couple of months ago and said “Uh-oh”. So, I was not all that surprised when I heard the recent news. If you can find the Boston globe article. It is an eye-opener.

    Congress Puts Children’s SSI Under The Microscope
    By Shaun Heasley
    October 28, 2011
    Congress is turning its attention to soaring growth in the Social Security benefits program for children with disabilities and that has advocates on edge.
    Concerns about the children’s Supplemental Security Income, or SSI, program came to light last fall when The Boston Globe published a series of articles suggesting that the benefits are seen as a form of welfare by some poor families. The articles highlighted the great lengths that some parents go — including putting their children on psychiatric medication — in hopes of securing hundreds of dollars in monthly disability benefits.
    Now, Congress is looking into the program.
    At a hearing Thursday, federal investigators told members of the U.S. House of Representatives that preliminary findings from their inquiry into the program show that the number of children receiving SSI benefits due to mental disabilities like autism and attention-deficit hyperactivity disorder, or ADHD, is on the rise. At the same time, periodic case reviews to verify continued eligibility for the program are less common.
    “Accurately diagnosing some types of mental impairments is a complex and often subjective process for (the Social Security Administration), which can sometimes be vulnerable to fraud and abuse,” Daniel Bertoni, from the Government Accountability Office, said.
    The focus on SSI is concerning disability advocates who worry that the possibility of a some taking advantage of the program could jeopardize benefits for families who are truly in need. SSI benefits are designed to aid low-income families who have a child with a physical or mental disability.
    “Any attempts to cut SSI for low-income children are unacceptable. We cannot allow children who are clearly in need to suffer,” said Peter Berns, CEO of The Arc in a statement. The organization is working with over 80 national disability groups to support the children’s SSI program.

  45. Dadvocate
    January 31, 2012 at 4:46 pm

    Though I’m no fan of the APA, the DSM IV for autism does resemble a bad restaurant menu and a streamlining/clarifying execise is long overdue. I also think that, if you actually read their proposed changes and rationale, it sounds pretty reasonable. Personally, I would have preferred to see a combined autism/PDD-NOS category and have Asperger’s treated separately. However, as proposed, I think plenty of space is being carved out for individuals with HFA/Asperger’s and PDD-NOS. Before people freak out about losing services, spend a few minutes and read the proposal.

    With all due respect to Dr. Volkmar, his notion of massive denials of support and services doesn’t make sense to me. People with an ASD do present with the proposed symptoms and/or behaviors. If a person doesn’t present with these, they’re probably getting an incorrect diagnosis of ASD…which is exactly the problem the APA is trying to address. I think a big concern folks should have is the scenario where some kids and adults are getting misdiagnosed with autism spectrum disorders or adults mistakenly “self-diagnosing” because the DSM IV is vague and overly broad.

    Anyway, at the end of the day APA is going to do whatever the APA wants to do, it’s not a public body and they are welcoming input from all stakeholders, including Autism Speaks, you, or me. I think Dr. Dawson’s position is the reasonable and responsible one, unlike the ARC’s (which conflates ID and autism routinely) “the sky is falling” approach or ASA/ASAN’s calls for retaining the broken status quo.

    Nowhere in this proposal do I read the notion of going back to pre-1994 diagnostic toolkit, rather it strikes me as taking an 18 year old relic of limited scientific usefulness and bringing it into the modern world.

    • diane
      February 1, 2012 at 6:42 pm

      Davocate-do u have a child,sibling,or family member with aspergers? My daughter attended k-12 grade undiagnosed andwent to school everyday in the same school district all 12 years. She is called invisible and u have to want to see the autism in her. If the professionals don’t want to see it as in writing the diagnosis gone she is the quiet girl molested..don’t speake for her if your conscience can but I will

  46. Sarah
    January 31, 2012 at 8:38 pm

    Just when the autism crisis is reaching critical mass, the APA moves to change the diagnosis concealing the true enormity of the crisis. The CDC reports that 1 in 70 boys in the US has an autism diagnosis. The APA can change the definition but it will not make our kids disappear. It may make them lose needed services which will be very sad outcome for many children.

  47. Stephanie Holmes
    February 1, 2012 at 5:25 pm

    Is Autism Speaks doing anything to fight the changes or what can be done? What can parents of Asperger’s kids do as the new diagnosis says the term Asperger’s will no longer be used?

  48. Diane
    February 1, 2012 at 7:40 pm

    I left a reply for dadvocate – I am not sure he has a child, sibling or family member with aspergers to be honest. My daughter was in k-12 grade in the same school system all those years and yet the professionals did not “see” her. She is termed invisible and you have to look for her autism. She is the quiet girl who is disconnected but sweet and smiles. She is the one who was molested and everyone then found out she couldn’t speak for herself. She is the high school graduate who was in the locker room at gym and couldn’t tolerate the noise and lights and commotion. She is the girl who could only comprehend 20% of what she wa reading we now know.

    If APA doesn’t want to “see” these with aspergers -they will write them out of the book – literally. But these are the ones lost to society and who society will pay for.

    Her diagnosis is correct and her treatment has worked amazingly. She is Aspergers.

    A doctor can choose to “see” her and this diagnosis or not. But she still exists.

    Dadvocate – you can choose to not “see” her Aspergers Syndrone like all the teachers did, but she is still here and you should not nonchalantly agree with the “professionals” who choose to be blind. Instead you should open your eyes and acknowledge the syndrone and help find a cure.

    Again, I don’t think you’ve had a family member, child or sibling affected with this illness.

    • Dadvocate
      February 2, 2012 at 2:32 pm

      Some people diagnosed with Asperger’s have the need for strong supports and interventions, others not. That is certain and I want people with Asperger’s who need supports to receive them. Screening, especially in younger populations, is critical to getting kids the supports they need as soon as possible. Unfortunately, that apparently didn’t happen in your child’s case. That’s awful because I know that the impact of Asperger’s on some can be severe on a lot of fronts.

      As I indicated above, my personal preference would have been for the APA to recognize a separate category for Asperger’s Syndrome. They didn’t, but the critical issue they are addressing with the diagnosis of “autism” in DSM IV is that it’s encouraged some professionals (far too many by the APA’s assessment) to diagnose “autism” too broadly and include individuals that are labeled Asperger’s, but who do not present with the behaviors and conditions of autism. It’s not a good thing on many, many levels if the word “autism” ceases to become relevant in terms of a wide range of professionals being able to accurately and consistently describe and diagnose the condition (and interventions that are needed).

      Again people should carefully read the proposals, I think they generally make sense versus the old ones.


  49. chris jacobs
    February 2, 2012 at 3:47 am

    are these people crazy? or just incredibly STUPID!!!!!!!!! It’s hard enough already to get services and somone wants to make it harder, i bet none of their children have autism. let;s have a meeting…and we’ll bring our children with us, then let’s see how fast you all want to change the criteria! you have to be out of your mind, or like i said, just plain stupid!

    (last time i looked it up in the dictionary, stupid meant,,,IGNORANT.)
    chris j, independence, mo.

  50. Mitchell Silvers
    February 9, 2012 at 12:27 am

    A response from The American Psychiatric Association, that I received…

    Dear concerned respondent to the DSM-5 Autism proposal:

    Thank you for contacting the American Psychiatric Association with your thoughts about the diagnosis of Autism Spectrum Disorder (ASD) proposed for DSM-5. We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual’s diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need.

    The new proposed criteria for ASD in the DSM are intended to improve the accuracy of diagnosing the disorders currently known as autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders. Most of the work group members are also clinicians who see patients with these disorders, and the proposal was developed with clinicians and their patients in mind.

    There are clinical and scientific reasons for improving the accuracy of diagnoses. All patients should have an accurate diagnosis based on the most up-to-date clinical and scientific knowledge available. A more accurate diagnosis will help clinicians and other service providers target available treatments and rehabilitation methods for their patients. In addition, it is important to note that patients whose symptoms no longer meet diagnostic criteria for the DSM-5 ASD diagnosis will very likely meet the criteria for one or more other diagnoses-for example, a communication disorder, for which interventions are available. From a scientific standpoint, more accurate diagnoses will also help guide research into the causes of the neurodevelopmental disorders and the development of new treatments. An informative article written by a work group member, Dr. Francesca Happé, on the changes to Asperger’s disorder can be found on the Simons Foundation Autism Research Initiative website: http://sfari.org/news-and-opinion/viewpoint/2011/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5.

    We are hopeful that continuing advances in research, diagnosis and treatment will help us devise better ways to treat autism and to reduce the devastating effect it has on individuals and families. We invite you to visit the DSM-5 Web site at http://www.dsm5.org where further information on ASD is available under the “Proposed Revisions” tab. This Web site will be revised and opened for public comment for a third a final time late this spring. Once again, thank you for your input.

    David Kupfer, M.D.
    Chair, DSM-5 Task Force

    Darrel Regier, M.D., M.P.H.
    Vice-Chair, DSM-5 Task Force

    Mitch Silvers.

  51. Mitchell Silvers
    February 14, 2012 at 10:52 pm

    Please e-mail your concerns with the DSM 5 to the following e-mail addresses:

    apa@psych.org or DSM5@psych.org

    According to the APA they have already gotten over 10,000 e-mails.

    This must be having an impact !

    Mitch Silvers.

  52. arranbruno
    February 16, 2012 at 9:59 am

    It would be nice to see what kind of tools organizations are using to support co-creation internally. We are using for example Lumo Flow in our management team and it helps us a lot in sharing ideas but also managing the implementation.

  53. Mandy
    February 17, 2012 at 8:06 pm

    It seems the new diagnosis does not address serious behavioral issues that are common among autistic individuals. Why?

  54. Mitchell Silvers
    February 18, 2012 at 1:41 pm

    The DSM 5 produced by The American Psychiatric Association, which is slated for release in the Spring of 2013, has caused an uproar in The Autism Community, and the community at large. First of all this publication guides medical and insurance decisions, in addition school supports for individuals on the Autism Spectrum. The manual will roll Aspergers Syndrome and PDD-NOS into the general category of Autism Spectrum Disorder. There has not been a revision in the DSM since 1994. Aspergers Syndrome and PDD-NOS are disorders with unique characteristics that should not be removed from the DSM 5 and medical terminology.
    The Diagnostic and Statistical Manual of Mental Disorders 5, is also tightening the diagnostic criteria for Autism Spectrum Disorders. According to Dr.Volkmar, Brian Reichow and James McPartland both at Yale. They did a new analysis. “They focused on 372 children and adults who were among the highest functioning and found that overall, only 45 percent of them would qualify for the proposed autism spectrum diagnosis”. This per a January 19, 2012 New York Times article. Link to New York Times Article:
    This is not the way to reduce the epidemic of children and adults being diagnosed with an Autism Spectrum Disorder. Autism is now believed to affect 1 in 110 people. These individuals eliminated will still need medical and educational interventions if they are to have a full and purposeful life. The new DSM 5 leaves this in doubt.
    The Autism Society and The Autistic Self Advocacy Network two national organizations have issued a Joint Statement on The DSM 5.” They have stated as such, it is essential that the DSM-5’s criteria are
    structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis”.

    The general public can voice their opinions to the APA, at DSM5@psych.org or apa@psych.org . In addition please sign GRASP’s petition at:
    http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5 . I urge all to take part in this important conversation !

    Mitch Silvers.

  55. erwin hector
    February 22, 2012 at 10:17 am

    Thank you for this great information, you write very well which i like very much. I am really impressed by your post.

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