Home > Autism in the News > A Single Diagnostic Category for Autism?

A Single Diagnostic Category for Autism?

Today the American Psychiatric Association announced plans to change autism diagnostic categories in the newest version of the Diagnostic and Statistical Manual (DSM).  Notably, it has been proposed that the diagnoses of Asperger syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) be removed from the manual.  A broad category of Autism Spectrum Disorder has been proposed instead.

These proposed changes are certain to be met with a wide range of reactions, and such reactions will depend on one’s perspective.  From the scientific perspective, research conducted over the past decade has shown that there is no strong scientific rationale for distinguishing among autism, Asperger syndrome, and PDD-NOS.  For example, research has shown that these subtypes are not linked to specific etiologies (causes) or specific treatment recommendations.  Studies have shown that autism and Asperger syndrome can show up in the same familes and that specific autism risk genes don’t aggregate neatly within diagnostic categories. Treatment recommendations for Asperger syndrome versus high-functioning autism or for autism versus PDD-NOS are not different.  So, from a scientific point of view, the changes in the DSM make sense.  The new classification system recognizes that autism is a spectrum disorder that varies quantitatively in symptom severity and expression.  The changes will allow us to look at the the landscape of autism broadly and focus on clusters of symptoms and seek etiological commonalities in disrupted signaling pathways that promise to tell us more than we have learned from considering each diagnostic category separately.

People in the community living with autism spectrum disorders may have a very different viewpoint, however.  For some individuals who have been diagnosed with Asperger syndrome or other subtypes of the ASD spectrum, the change in the DSM will be very disruptive and distressing. Many individuals personally identify with the diagnostic label they have been given and grown up with.  They may participate in support or advocacy groups that identify with a specific label, for example “Aspies”.  Thus, although the scientific and professional communities may institute a change in the diagnostic criteria, many may choose to use the original labels despite the changes in the DSM.  And there is nothing wrong with this.  In fact, there is precedent for this.  For example, “sensory integration disorder” and “nonverbal learning disability” are examples of labels that have been used by the clinical community, but are not specifically part of the DSM.

One potential positive impact of the proposed changes to the DSM is that they may help increase access to services to those individuals with Asperger syndrome and PDD-NOS who previously were denied access to autism-related services. From the perspective of a parent who is struggling with their young or adult child’s symptoms, it hardly matters what name is given to the collection of their symptoms. Increased access to services can help ease the burden of symptoms for those struggling to manage them.

We need to be respectful and compassionate about what a diagnostic change might mean for individuals with ASD and their families.  We invite you use this space to share your thoughts about this change and what it means to your family.  We will be listening and look forward to hearing your perspective.

  1. Amy Skaggs
    May 17, 2010 at 11:44 am

    My feelings on this are mixed. As a mother of a kindergartener who is currently diagnosed as PDD-NOS, we have been thankfully free from labels. However, I do understand why groups such as those for “Aspies” are there, and I plan to attend support meetings on autism. My son will inevitably be diagnosed with some type of autism, highly functioning, within the next year. I leave it up to the professionals for now and will continue to “take it or leave it” when I receive input on his condition.

  2. Tracy Cote
    May 31, 2010 at 4:02 pm

    I am a single mother of a first grader that was diagnised with asperger’s about a year ago. I feel the new way of diagnosis would be nice for the fact of getting my son the help he truly needs. I have struggled with getting him the help he needs in school throught the special ed department, and seeking help outside of school, the changes could help when it comes to his doctors taking me seriously. I then worry that if my child is put into the same catagory as autism and not a asperger’s then he may not get the right help for him. His teacher is recomending a school program for him for next year where the specialize in asperger’s but if he is now combined with autism things will change. My son tends to mimic the behavior of others around him and if he is put into a class with children with worse behaviors than his own I am worried about any of his previous progress. I also worry that if he is in a class that works too much on behavior they will not challenge him as he needs to be academicly.My son was tested with an above average IQ and needs academic stimulation otherwise he gets bored and acts out. I’m still waiting to see if this will help or hinder his progress so far…

  3. Dawn
    October 27, 2010 at 10:36 am

    As a mother of an 11 year old boy who WAS PDD NOS at the age 3 is now left floating between what IS Autism and what is not. His ASD has been removed and I am greatful for that but now he is classified as ADHD (Which is he not) and will no longer receive the extra help because of this. He has definately grew up, out of alot of the behaviours that he had when he was smaller. He still has problems with transitions, social ques, language, routines and expression. I dont understand the changes myself and have been left in the dark about what to expect now. I believe this new system has narrowed the path for my son and now is left out in the cold because he is NOW considered as non autistic.

  4. Awesomely Anonymous Author
    January 10, 2011 at 12:27 am

    I did not want to say my name on here because I do not want everybody in the whole world to know who wrote this. I believe it is my personal business what my name is, but I’m wanting to be involved in sharing about my disorder, NLD.

    I was diagnosed with Non-Verbal Learning Disorder (NLD) at age thirteen and I am the only one that I know of who has it. I know there are other kids in the world who have grown up with this, but I don’t know them personally. It’s hard for a kid growing up in the world where you cannot understand why you are different from others, yet you know you are different. I’m not going to go into my whole story, but here’s what I think on this subject:

    I have not read the DSM-IV simply because I don’t know many people who are on it. I don’t know if I am either because I think it may have changed. What I think though is that I would like for more disorders to be categorized on some kind of list or something, whether it is the DSM-IV or something else. There aren’t as many resources out there for kids and adults with NLD, even though it is similar to Asperger’s Syndrome. (Social cues misread, high intelligence in some people, being very talkative but not able to understand expression very much, impaired judgement)–those are a few of the things we sometimes have in common–yet, you do not see NLD up there on that list. I am wondering why that is and why we can’t be on there so more people can know about us.

    I think many of the posts are valid here about the DSM-IV staying the same, but I think it will also need to change as more people get diagnosed with different things. I am a successful college graduate who loves writing and baseball and happens to live with NLD. I am a great story for a misunderstood disorder, yet sometimes I feel like nobody really gets it. I think if there were an entry in the DSM-IV about NLD and other disorders, more people would understand what it’s like. People might start to know more about themselves and figure out if they are different too. Then there might not be so many people who don’t get us. I intend to change this world by writing about people who are struggling not only with regular problems, but with learning differences and the like. I hope that I have not offended anyone and I am glad to have seen this website.

    Thank you,

    Awesomely Anonymous Author hoping to write a book about NLD or Autism or any other difference that comes to my mind.

    P.S. Another of my disabilities is having difficulty with going on and on with writing and switching to huge tangents. Luckily, it is one of the many I’m able to laugh about. I am not a victim. I am a fighter. I will never give up. I will never stop being who I am because I am awesome. I feel that at age twenty-four I have finally grown up (at least on the outside) and I’m responsible. In a few years, I hope to be even more successful than I already am. I have a family who loves me dearly and a few close friends. I just want you to know there is hope for different kinds of people in this world, no matter who you are. I respect pretty much everybody and that’s why I intend to keep on pursuing my dreams of changing the world. I don’t really hope for a cure to NLD because I feel like it’s a part of me that I can deal with, but something that would make it easier would sure help. Also, maybe if I could talk to other people who actually knew what it was, that would help too.

    That is why I posted on here.

  5. October 5, 2011 at 3:15 pm

    I’m a 58 year old male who was diagnosed with Aspergers Syndrome when I was 55 years old. It was not a disappoint to find it out. It was a relief, to be quite honest.

    It helped me to, finally, define who I am. Labels, however, are just that… labels. They are not who we are, as people.

    As for whether we are called “Aspies”, “Auties”, or whatever are in this boat else the scientific community can think up?…

    Does it really matter? We are who we are. And, all of us on “The Autism Spectrum” are in this boat together. Let’s start acting like it.

    (really wouldn’t want to embarrass ourselves in front of the “NT’s”, eh?)

    :-)

    Eddie

  1. May 21, 2011 at 9:22 am

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