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DSM-5 Changes Aren't Limited to Autism, Final Feedback Sought

The American Psychiatric Association is seeking final input on the drafted changes to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The public can give feedback on the changes from now until June 15 through the APA’s website. The proposed changes to the autism diagnosis have been covered significantly by the media, but several other disorders will also be affected by upcoming changes to diagnostic criteria.

Disorders that may have their definitions change include the following categories. Because some of the categories include a long list of disorders, I’ve highlighted some of the disorders that will be of interest to parents.

  • Neurodevelopmental Disorders (includes Intellectual Disorders, Communication Disorders, Autism Spectrum Disorder, Attention Deficit/Hyperactivity Disorder, Specific Learning Disorder, and Motor Disorders)
  • Schizophrenia Spectrum and Other Psychotic Disorders
  • Bipolar and Related Disorders
  • Depressive Disorders (includes a change to Major Depressive Disorder, postpartum onset: extends the time for onset from 4 weeks after delivery to 6 months after delivery).
  • Anxiety Disorders (includes Separation Anxiety, Generalized Anxiety Disorder, Phobias, and a new description for Panic Attack).
  • Obsessive-Compulsive and Related Disorders (includes Obsessive-Compulsive Disorder, Body Dysmorphic Disorder, Hoarding Disorder, Hair Pulling Disorder, and Skin Picking Disorder).
  • Trauma and Stressor Related Disorders (includes Reactive Attachment Disorder, Posttraumatic Stress Disorder, and Adjustment Disorders).
  • Dissociative Disorders
  • Somatic Symptom Disorders
  • Feeding and Eating Disorders (includes Pica, Rumination Disorder, Avoidant/Restrictive Food Intake Disorder, Anorexia Disorder, Bulimia Disorder, and Binge Eating Disorder)
  • Elimination Disorders (Enuresis, Encopresis)
  • Sleep-Wake Disorders (sadly, still no “Go the F**k to Sleep Disorder”)
  • Sexual Dysfunctions
  • Gender Dysphoria (formerly known as Gender Identity Disorder, now includes Gender Dysphoria in Children and Gender Dysphoria in Adolescents and Adults)
  • Disruptive, Impulse Control, and Conduct Disorders (includes Oppositional Defiant Disorder, Intermittent Explosive Disorder, and Conduct Disorder)
  • Substance Use and Addictive Disorders. (Hey, there’s a whole section for Caffeine-Related Disorders. Can I get a prescription for intravenous Diet Coke?)
  • Neurocognitive Disorders
  • Personality Disorders
  • Paraphilic Disorders
  • Other Disorders (includes Non-Suicidal Self Injury and Suicidal Behavior Disorder)

Proposed changes to the ASD diagnosis have not been revised over the last year. Proposed changes to other diagnoses have already been altered based on public comment.

If you read about any of the changes over a year ago when they first came out, you should know that some of the proposed changes have since been revised. After extensive public comment, Major Depressive Disorder, for example, was clarified as it relates to bereavement.

The APA emphasizes that the proposed changes are proposed, not final. To that end, the organization welcomes comments from professionals and laypersons alike. The final manual approved will be submitted to the American Psychiatric Publishing for publication by December 31, 2012. The 166th APA Annual Meeting in San Francisco, May 18-22, 2013, will mark the official release of DSM-5.

To give the APA your thoughts on specific proposed changes:

1. Read the proposed changes at the APA’s website. (Note: Autism Spectrum Disorder is found under the “neurodevelopmental disorders” heading.)

2. Each proposed change has four tabs: Proposed Revision (gives the proposed changes), Rationale (why the APA thinks it should be changed), Severity (categories a doctor can use to rate how severe a person’s disorder is), and DSM-IV (the current diagnostic criteria).

3. At the bottom of the Proposed Revision tab, you’ll see a line that says “Want to comment on this proposal? Please Login or Register Now.” Registering with the site is free and took about 20 seconds. I received an email giving me my password instantly. Plus, the e-mail subject line was “APA DSM-5 Membership Approved,” which made me feel fancy.

4. Once you’re registered and logged in, a box will appear at the bottom of the “Proposed Revision” tab. Enter your comments in the box, and then type in the code below the box to verify that you’re an actual person and not some DSM-loving spambot.

Since my four kids have a whole alphabet soup of diagnoses, I did check out a lot of the proposed changes, and to my non-medical eye, they seem reasonable, appropriate, and helpful. To be diagnosed with Generalized Anxiety Disorder, for example, one must only have been suffering with it for three months, instead of six. The criteria for ADHD are pretty much the same, but more precise descriptors are given for people who fall into multiple categories (such as being both inattentive and hyperactive).

The autism diagnosis is changing the most dramatically, including the elimination of Asperger Syndrome,  and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) as a diagnosis. Instead, there will be one larger “umbrella” diagnosis of Autism Spectrum Disorder.

I’m not overly concerned about the changes. Despite one really disturbing study that showed potentially huge numbers of people could be excluded by the new criteria, I’m just not freaking out. (See Why I’m Not Freaking Out About the New Autism Diagnostic Changes for more on that.) Two of my kids have (under the DSM-IV) diagnoses of Asperger Syndrome. They’re both considered fairly high-functioning. Under DSM-5, they’ll still be very, very clearly autistic.

I can’t emphasize enough how important it is to teach our kids to self-advocate.

In fact, at the time that my daughter was diagnosed with Asperger Syndrome, we looked at the criteria under both the DSM-IV and the DSM-5. As it turned out, her diagnosis was even more clear under the DSM-5. Additionally, I’ve been assured by several different psychologists and special education experts that a student with a current diagnosis of Asperger will not “lose” his or her diagnosis.  In our school district, any student with Asperger will just be re-categorized as having Autism Spectrum Disorder. (However, if your school district requires students to be re-evaluated every three years, these changes could potentially be an issue.)

Parents of kids on the spectrum, or with other disorders diagnosed through the DSM, would be smart to review the diagnostic criteria changes. I think it’s also important for older kids and teens to be aware of what their diagnosis means. While I’m not going to worry my kids about potential changes, when the DSM-5 comes out, I’ll take it as an opportunity to review the information with all four of my kids, in age-appropriate ways.

As a woman who has had to navigate the mental health “system” for myself for the last two decades, I can’t emphasize enough how important it is to teach our kids to self-advocate. Some day, my anxious child will be an adult. I want her to know the resources available to her so that she is able to access therapy, medication (and medication changes), and other services for herself.

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