Updates from IMFAR

The International Meeting for Autism Research (IMFAR) was held this month in Toronto.  This meeting attracts nearly 2,000 participants and presents research from basic science to potential new treatments.  Since few of us have the opportunity to attend these innovative sessions, I thought that I would try to review some of the presentations that may be of interest to all of us. 

One of the sessions provided an update on the DSM V.  Dr. Sue Swedo, chairman of the committee responsible for recommending changes to the DSM criteria, emphasized that the committee had no intention of reducing the number of people diagnosed on the autism spectrum. Dr. Swedo stated that the new criteria is intended to capture all individuals on the spectrum.  The three categories of symptoms were reduced to two, and all the sub types will be collapsed under one category – spectrum disorders. 

The reason for this change was that even expert clinicians cannot reliably distinguish among the different sub types when they make their diagnoses.  The new element of DSM V is the “specifiers,” which will be part of the diagnostic evaluation.  For example, it will be specified whether the child has an intellectual disability or a language delay.  Also noted will be the pattern of onset, any genetic causes and any accompanying medical conditions. 

As a result of the publicity from the April New York Times article, which stated that a large percentage of persons with Aspergers/high functioning autism would be excluded, over 6,000 comments about the new criteria were posted. These comments, with approximately half supporting the changes and half not supporting the changes, have led to a refinement in the language of the criteria.  According to Dr. Swedo, the committee did not in any way wish to exclude individuals from the services that they need. 

Autism Speaks will be funding a prospective study investigating whether, with the two new sets of criteria, more or fewer individuals are diagnosed with ASD.  The discussion continues.

Just a reminder: If you would like to comment on the proposed changes, the final open comment period ends on June 15. Comments can be made online at the American Psychiatric Association website.

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4 Responses to Updates from IMFAR

  1. Cyn says:

    ” The three categories of symptoms were reduced to two, and all the sub types will be collapsed under one category – spectrum disorders. ”

    I found this part very interesting and it reminded me of what a SLP told me who specializes with working with children with Autism.

    “The new element of DSM V is the “specifiers,” which will be part of the diagnostic evaluation. For example, it will be specified whether the child has an intellectual disability or a language delay. Also noted will be the pattern of onset, any genetic causes and any accompanying medical conditions. ”

    This change would have been very beneficial for my son because in our experience when dealing with some professionals and they see the diagnosis “Autism Spectrum Disorder” and “non-verbal” they automatically assume that he has an intellectual disability. They speak in front of him thinking he does not understand what they are saying and then wonder why when they want to play with him to assess him that the once smiley little boy is suddenly very un-cooperative. I also find that teachers seem very surprised when they discover how smart he is and his high cognitive ability for his age.

    Thank you for sharing this info as always:)

    • From my experience, for many when they hear the term “Autism/non-verbal” there is an immediate assumption of an intellectual disability. However, when they hear Asperger’s or high functioning Autism, they assume average or above average cognitive abilities. So, I think eliminating this terminology will be a problem for many. I know a number of young people who refer to themselves as having Asperger’s but not Autism. Also, some have discussed that if you have an intellectual disability you will not receive an Autism diagnosis. I have not seen anything definitive on this.

  2. Emily says:

    I just want to say, I absolutely LOVE rendiag all of your entries.This is my answer:Autism, to me, is a part of who my child is… for better or worse, beautiful or ugly. Yes it causes extreme temper tantrums, misunderstandings, dietary issues and more… but it also shows me a side of life that I would have never seen before otherwise. A whole new profound way of looking at the world.Autism makes it very hard for my child to know what other people may be thinking… a look on their face and body language aren’t enough. Autism also makes it very hard for my child to understand the concept of time. To tell me about a year ago, he refers to it as “a lot yesterday”.It’s because of Autism that my son will kick and throw things as he enters a rage filled meltdown that is completely beyond his control.Probably what hurts most, however, is the looks and comments and judgments that others make while we’re in public. Whether it be a meltdown at a grocery store or even a physical activity where my son clearly isn’t as “in control” as the other children. Being different, to most people, is a negative thing.It’s for this reason, that Autism to me, has become my purpose. Actually, my son (both of my boys to be honest) are more important than Autism itself, but they’ve given me my purpose in life… to not just raise awareness of Autism but to try to help others to understand it better and to accept those that have it.Perhaps if I can reach enough people, those looks and comments and judgments will begin to go away. If I can reach people in my own community, I can help people accept my child.. if I can reach people around the world.. I can help many children.And not just children… but teenagers in high school that are being bullied or even beaten… and adults too that may still be living with their parents or at the very least, struggling at keeping jobs and a social life.Since my son has been born, and more so, since we’ve received his diagnosis, I’ve learned so very much about Autism and yet I still have far far more to learn.And this is my meaning in life… this is my purpose.Not to change my child because my child is wonderful, amazing and every bit as deserving of a everything that you and I have as we are.My purpose is to change the world around him… by talking to anyone that will listen. By giving them just a little bit more understanding… and hopefully, helping them to accept my son and everyone else with Autism.That’s what Autism is to me.

    • Emily,
      Thank you for reading the blog! I agree wholeheartedly with your thoughts that increasing awareness will increase acceptance. Children with autism are children first. Our charge is how do we get that message across?

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