Thursday, April 24th 2014

A few weeks ago, the staff of M&L Special Needs Planning, LLC decided to do something in honor of Autism Awareness Month, which takes place from April 2nd to April 31st.

We settled on doing our part to increase autism awareness by using our blog as a platform for information and education. We felt that by using our weekly blog to write about topics that are relevant to individuals with autism spectrum disorder (ASD) and their families, we are accomplishing two goals – providing information to those readers that are directly affected by ASD, and educating and informing those readers who aren’t.

Last week, we were sidetracked by the release of the United Cerebral Palsy Association’s The Case For Inclusion 2014 report. Due to the incredibly important nature of this report to individuals with all types of disabilities, including ASD, we decided to focus on that first. This week, however, we are back to our original plan.

So, please join us as we take a look at the DSM’s recent changes to the definition of ASD, and the ways in which these changes may affect your loved one and family.

What is the DSM-5, and how is it used?

If you are a parent of a child with a cognitive disability, chances are you are familiar with the DSM. On the off chance that you aren’t, here is a little background info: The DSM abbreviation stands for The Diagnostic and Statistical Manual of Mental Disorders’.  Quite simply, it is a book or manual published by the American Psychiatric Association that it is used to provide information on all categories of mental health disorders. The DSM-5 is the fifth and latest version of this manual. According to the DSM-5 website, this edition of the DSM was released in May of 2013.

In addition to being a handbook for information, the DSM is also the “authoritative guide to the diagnosis of mental disorders.” As the DSM-5’s website states, “DSM contains descriptions, symptoms, and other criteria for diagnosing mental disorders. It provides a common language for clinicians to communicate about their patients and establishes consistent and reliable diagnoses that can be used in the research of mental disorders.[i]

In other words, if your child has been diagnosed with a mental illness or disability, the doctor used the guidelines in the DSM to arrive at that diagnosis.

Note: For a more detailed explanation of the DSM, please read this helpful about.com article, What is the Diagnostic and Statistical Manual (DSM)?

How Has the Definition of Autism Spectrum Disorder Been Changed in the DSM-5?

The latest edition of the DSM came with an “updated” definition of Autism Spectrum Disorder. Quite simply, this new definition took a number of disorders that had previously existed as stand-alone conditions, and folded them under the umbrella term Autism Spectrum Disorder.  All of these disorders are now on a spectrum, with a clinician identifying the level of severity.

As well, changes were made to the way that ASD is diagnosed: “under the new criteria individuals with ASD must show symptoms from early childhood, even if those symptoms are not recognized until later. This is an important change from earlier criteria, which was geared towards identifying school-aged children, but not as useful in diagnosing younger children.[ii]” This change is intended to encourage earlier diagnosis, but also to provide a diagnosis safety net in case the symptoms aren’t recognized early on.

In case that was confusing, we found that the explanation provided by the National Institute of Health (NIH) described it best:

“With the publication of DSM-5 in May 2013, the American Psychiatric Association’s official diagnostic criteria for ASD were changed to reflect current scientific knowledge and attempt to refine the criteria to reflect the wide range of symptom expression within this diagnostic category.  Specifically, the category of Pervasive Developmental Disorder (PDD), which had been in use since DSM-III was published in 1980, was removed along with its subtypes (Autistic Disorder, Asperger Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified).  The DSM-5 describes one category, Autism Spectrum Disorder (ASD), with specific criteria related to deficits in social communication/interaction, and restricted and/or repetitive patterns of behavior.  There is a metric for describing severity and specifying accompanying developmental and medical conditions.”

How Can This Affect My Family Member with ASD?

The fact of the matter is that everyone that has anything to do with diagnosing, treating, and researching a condition or illness heavily relies on the DSM. The manual is even relied on by those who provide medical insurance, funding, and services related to that illness. In short, changes to a DSM definition can affect whether or not an individual with a condition will be diagnosed as such – and it is this diagnosis that will determine whether an individual will receive services or funding.

Critics of the changes raise the concern that the new definition of ASD may mean that individuals who had previously been diagnosed may loose that diagnosis, and with it the much needed services and funding. Critics have also expressed concern that the new methods of diagnosis may also mean that individuals with the disorder may get left behind.

If you have a child or family member with any of the above conditions, these changes to the DSM may very well affect you. It is important to keep in mind, however, that the DSM-5 also includes a note that “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”

Latest News On the DSM-5 Changes to ASD

Despite that fact that is has been almost a year since the release of the DSM-5, the Interagency Autism Coordination Committee (IACC), a federal autism panel, has recently raised concerns about the new definition. According to an article published in Disability Scoop, the committed said “many unknowns remain regarding who will be flagged and how under the new DSM and what it will mean to be classified under the updated diagnosis.”  The IACC cautions clinicians to be careful when using the new criteria to diagnose, stating “the new diagnostic criteria have not yet been rigorously tested in young kids, adults, and individuals from various ethnic populations.”

In light of these concerns, the National Institute on Health is now seeking public comment, “urging stakeholders to speak up about implications they are seeing stemming from the revised Diagnostic and Statistical Manual of Mental Disorders.[iii]

For more information on the NIH’s call for comment, please click here.

Need More Information? We Can Help.

If you would like to learn more about this issue, or any other issue related to your family member with ASD please do not hesitate to contact us! We are experts in the field of special needs financial and life planning, and can help you every step of the way. From diagnosis and establishing your family’s Comprehensive Special Needs Financial Life Plan, to helping your adult child with a disabilities find employment and independent living, we can are experienced with and provide guidance to you during every step of your special needs journey.

Thanks so much for dropping by today! Join us next week as we continue our ASD awareness campaign with a discussion of three independent living programs for individuals with ASD, and provide a brief update on Ron Suskind’s newest book Life, Animated: A Story of Sidekicks, Heroes, and Autism.