Home > Awareness, Science > Tune in TODAY for Autism Speaks’ Analysis of the DSM-5

Tune in TODAY for Autism Speaks’ Analysis of the DSM-5

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.

Read Geri Dawson’s blog post about the DSM-5, The Changing Definition of Autism: Critical Issues Ahead.

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

Vodpod videos no longer available.

  1. Frances Coffey
    January 20, 2012 at 2:08 pm

    I’d like to know what this means for my son who was diagnosed with PDD in the 7th grade while has an I Q of over 110 he has the maturity of a 10 yr old

    • January 20, 2012 at 5:53 pm

      I feel the same way about my son who is 5yrs old and diagnosed with PDD also and still does not talk. His mental age is 2-3yrs olds old right now.

  2. January 20, 2012 at 2:10 pm

    please post the clip so we can watch it. thanks

  3. January 20, 2012 at 2:43 pm

    yes…the 2:20 airtime was incorrect….it didn’t show then…..please post the clip. thanks

  4. Lorisa
    January 20, 2012 at 2:51 pm

    My five year old is only a year into his special school programs! He’s very smart, but not ready for general ed!! This is heart wrenching!!

  5. Jeanette Kiester
    January 20, 2012 at 6:55 pm

    As a licensed speech/language pathologist in IL for the past 35 years I find this change absolutely appalling. I know what this means for many of my kids. They get nothing in the schools. They will sit in general ed. languishing in their own misery. Special ed directors are chomping at the bit on this one. They just found a way to get kids off of caseloads for specialists and out of those educational resources they need. They should know that school is not just about getting an “A” on a quiz. If Yale University and the DSM is worried about overdiagnosing they should be after those who lack those competencies to make such calls. Don’t hurt the kids.

  6. Raechelle
    January 20, 2012 at 7:14 pm

    I am very concerned and we must band together. My son has Aspergers and receives special ed in school and does well bu needs help…..This is unbelievable!!!!!

  7. Traci
    January 20, 2012 at 7:28 pm

    This is a politically motivation agenda ( smells of it)!! I and my children have Asperger’s and having struggled my 43 years on this Earth and dealing with the affects of this disorder in our home I can attest to it’s authenticity. When finally my children are about to embark on new family directed therapy this would be a huge blow to our family and my children future. I am also 100% against them changing the naming of this disorder. People are finally beginning to understand Asperger’s and if they change the diagnoses to simply Autism Spectrum disorder / lumping us all together people with not see our issues in the same way. I have Asperger’s !! Not Autism !!!

  8. Patricia
    January 20, 2012 at 8:26 pm

    My 10 year old daughter has a written diagnosis of autism but has high-functioning. Will this change her diagnosis or will she’ll be grandfathered in?

  9. David C
    January 20, 2012 at 9:03 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.

  10. Jeanette Kiester
    January 21, 2012 at 12:42 am

    I was so upset I didn’t even catch my error. I mean “are” not “is” worried. You become so outraged you don’t even proof your comments. Again this is a slap in the face to every child, parent, family, and those that believe in children. I was thinking this evening no one questions how ADHD manifests over time. Certainly children with that diagnosis can appear very different by adolescence and early adulthood. Why would a group of scientists or physicians deem that individuals who are now adults might not meet all of the criteria for autism. If the person had proper assistance would we not expect improvement? My profession is driven by evidence based outcomes. Guess I’m just not convinced their science is solid on this one by changing the criteria in the DSM. I have had many students who never flapped their hands and such and still presented with characteristics for spectrum.

  11. Margueritte Hillman
    January 21, 2012 at 11:13 am

    This is irritating on many levels. It smacks an effort to decrease/eliminate treatment costs to the huge detriment of the child. The state, the insurance industry, the federal government, the society at large may want to close their eyes, to dismiss and turn their backs on these kids. The problems that caused the symptoms still exist. In my opinion, not enough is done to connect the dots to the chemical soup that we stew in. Not enough is being done to look at other possible causes, such as retroviruses and strains of herpesvirus. If connections were found, someone might just be liable. We wouldn’t really want hurt their bottom lines, would we? My older son displayed symptoms when he was 13 months old. After taking him to a number of doctors, he finally ended up at UCLA’s NPI. They made the diagnosis on 3 separate occasions, the first when he was 4 years old!!!. Prior to UCLA, individual doctors hinted at this and guessed at that but could tell me nothing because they knew practically nothing. My oldest son was born in 1987, near the beginning of the “Autism” epidemic.
    I also have a younger son who was born with a number of physical anomalies, developmental, speech delays and had mild autistic-like symptoms. He was tested very extensively when he was 5 years old and again when he was 9 year old by a psycho-educational psychologist. His conclusion both times was that my younger son did not have autism, but he could not fit neatly into any category because of the physical anomalies. It was later discovered by his geneticist that he has chromosomal changes that a subset of autistic children have. My younger son is now 12 and those “autistic-like” symptoms have subsided, thanks to several factors. I am confident that the psychologist’s conclusions are correct. Yet, the geneticist’s findings leave more questions than answers. My older son is still more profoundly affected, autistically speaking, but the vague genetic link has not been established with him.
    My questions for all these so-called experts who don’t want to call it “autism”, if not this diagnosis, then what? The complex of symptoms needs to be dealt with. Are these kids going to be ignored now? Are other labels going to be invented? Something profound is happening here and all that I am reading is the ominous warning to parents to fix these kids by themselves.

  12. johnson26085
    January 21, 2012 at 11:23 am

    I am Mom to a 6 year old little boy who has the PDD-NOS diagnosis. He is a success story, but he has had many hurdles along way. He is a fraternal twin who was born at 31 weeks. Once we got past the tenuous first year and the associated health problems, we thought that we were in the clear. We truly began our journey when at 18 months he developed an ear infection and began head banging. The ear infection resolved, but the head banging did not. Many told us that he would not truly hurt himself, and to just ignore it. The problem increased to the point that he was self harming throughout most of the day and night. We were at a point of consulting with CT scans when he was finally fitted for a cranial helmet 3 months later that he wore for 24 hours a day. My son was covered head to toe in black and yellow bruises and open wounds, regardless of our attempts to keep him safe. His bedroom looked like something out of a CNN headline. It was a total nightmare. We went through a year and a half of diagnostics and received a range of diagnoses including mood disorder not otherwise specified, developmental delay, speech delay, severe sensory integration disorder and hypotonia (a symptom of cerebal palsy, but did not meet criteria for a diagnosis.) County funding would only pay for therapy once a month, which we lost when we revealed that we were paying out of pocket for additional weekly therapy. We were using credit cards and when that ran out, paying small portions at a time directly to the providers. My son was enrolled in a special needs school and we were self paying ST, social ST, OT and behavioral management therapy. Health insurance denied all claims due to the developmental delay diagnosis. Finally at age 3 we received the PDD-NOS diagnosis. A door opened up for us and we were now eligible for funding through the county for weekly therapies. We now also had access to the autism scholarship, special to Ohio. Slowly, we started to see improvement. He began to talk, and we had a working plan in place to better manage his tantrums. The positive impact was enormous. He is now considered to be high functioning, but has maintained his PDD-NOS diagnosis. He continues to receive support from weekly ST (including social ST) and OT. We have put the autism scholarship towards the tuition of a great school. On the playground, it would be hard to spot that he ever had such a rough start. I imagine that he will continue to need some degree of support as he goes through life. But we are now very optimistic about his future. Honestly, I don’t know if he would have met criteria back then, or now with the proposed set of autism criteria. The bottom line for our family was securing the appropriate services and support, and the critical funding. We were nearly broke and his treatment would have ended. We absolutely would not have that support without my son’s diagnosis. That terrifies me for other families facing their own gut wrenching rode of diagnostics. I would not be sitting here watching my grinning son gleefully slide down our front driveway on a sled with the first fallen snow.

  13. Gary Belcher
    January 22, 2012 at 2:20 pm

    The only long term hope for autism will be to have it moved from Axis II to Axis III. Leaving it in the area of personality disorders (Axis II) in such company as anti-social personality disorder and borderline personality disorder fails to recognize its system wide effect on the patient. If the A.P.A. can not look beyond the superficial symptoms such as O.C.D., A.D.H.D., et al, and instead, focus on immune system disruption, a high probability of siezures, and a wealth of other critical issues that have destroyed these victim’s lives, then I question the value of this organization’s efforts in this regard.

    And no, Dr. Volkmar, you can not end an epidemic by making it more difficult for the patient to be diagnosed. If you want to “nip it in the bud.”, you need to find out what causes it and how to stop it from happening.

    Submitted with a sense of indignation.

    Gary Belcher

  14. Cathy
    January 22, 2012 at 3:33 pm

    What will happen to people who are already place in wonderful groups, if they no longer qualify for services??

  15. January 22, 2012 at 11:23 pm

    Wow, all of these stories are so heartwrenching. I will fight tooth and nail for my 4 year old who was diagnosed with PDD-NOS when he was 2. But if all else fails and services are not there for my son anymore, I will pull him out of school and home school him even if it means we go broke from me not working. My husband and I will make sure that his needs are met if the state and country will not. Good luck to you all.

  16. Mitchell Silvers
    January 23, 2012 at 1:27 pm

    I spoke with the American Psychiatric Association today. They are definitely taking comments on the new DSM 5. They are taking comments at dsm5@psych.org.

    So please send them e-mail with your personal history and how loosing the Autism diagnosis will affect your family member with Autism and your family. Please forward on this e-mail to all parties that might have an interest on this topic…

  17. Ilyse Levine-Kanji
    January 23, 2012 at 1:36 pm

    Here is a piece I wrote for CommonHealth, the National Public Radio blog, essentially arguing that if schools & insurance companies don’t provide services now, society will pay more later and people with autism will be relegated to a lower quality of life. http://commonhealth.wbur.org/2012/01/autism-definition/

  18. January 23, 2012 at 4:56 pm

    If you have a child who “appears” to be doing well after treatment in the early years, as the parent of a now 22 year old, let me advise you to fight now to keep their Aspergers or PDDNOS diagnosis. It was during the middle grade years that real “differences” showed up. When your child needs to manage themselves and their world a new set of unknown symptoms show up. They are not able to remember and plan their day, not able to work, not able to make friends…..

    Hold on and fight for your diagnosis now.

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