An Update on the DSM-5 and ASD

May 17, 2012
By Autism Society

The Autism Society knows individuals are concerned about the potential impacts of the proposed criteria for autism spectrum disorders in the DSM-5, set to be published next spring. The American Psychiatric Association (APA) has recently opened the third session for public comment ending on June 15. So far, more than 6,000 comments have been received by the APA workgroups related to ASD.

In early May, we attended the annual meeting of the APA in order to learn more.

In this meeting we learned about the science behind the revision process. We want to share this information so those we serve can be fully informed and actively engaged in the public comment period currently underway. The most significant concern of the Autism Society is that individuals who receive services because they demonstrate a clinical need for those services will continue to have their needs met and qualify for services and/or support.

The Diagnostic and Statistical Manual of Mental Disorders (DSM), a publication of the APA, provides a common language for physicians intended to facilitate accurate diagnosis of brain disorders and guide appropriate interventions. According to the APA, revising the definition of autism spectrum disorder is an attempt to further establish defining characteristics so all diagnosticians are able to diagnose with more reliability and validity from person to person and place to place. The specific diagnoses that are considered Pervasive Developmental Disorders are all quite complex. According to many clinicians, the problem with the definition of autism in the DSM-IV is that it is too long and too complicated, generating diagnoses of co-morbid conditions. For example, in some instances an individual may be diagnosed with obsessive compulsive disorder or anxiety disorder, while in some people these symptoms are observed and used to diagnose a person with ASD.  These inconsistencies can increase true understanding of a disorder, impact research efforts and lead to treatment non-specificity.

Diagnostic labels are used to indicate commonalities among individuals. The APA reports that it did not find significant data to differentiate a diagnosis of Asperger’s Syndrome, PDD-NOS and “high functioning” autism. It's important to remember here what we are really talking about - labels that guide probable treatment indications. The Autism Society has always believed that people are people first. Labels are used, as indicated above, to increase understanding of need and guide appropriate interventions. Labels should never be used to pass judgment on a person or to determine their worth. We have heard amid some of the concern the some at the high end of Individuals on the autism spectrum have found others they can relate to because of their commonalities. In return, people are experiencing improved self-esteem due to increased understanding of their personal diagnosis and an ability to determine for themselves if specific treatments are needed. Additionally, we believe that broad criteria on the autism spectrum has played a role in the “neurodiversity movement,” increasing acceptance of behavioral diversity. All of these are very positive outcomes, but they are outcomes that should be based on the innate worth of human beings and not on a label used to classify them.

To some, the downside to the broad criteria is that it has made it more difficult to grasp an already complex disorder that manifests in significant variability from person to person. Some have made conclusions that Asperger’s is synonymous with “high functioning autism,” when this is not always the case. In many parts of the country, a diagnosis of Asperger’s creates ineligibility for services. This is wrong and not based on a consistent approach to the rendering of services based on need.  Evaluations and determinations of eligibility must be based on need and not on presumptions formed from a diagnostic label. A lack of clinical clarity can also lead to particular populations (females, minorities, and those from low income families) from being properly evaluated resulting in misdiagnosis and improper treatment. These are very serious issues that must be addressed in order for us to ensure individuals are getting the services they need. In the DSM, a diagnosis of autism is based on whether an individual meets a certain threshold of impairment. You can think of threshold based on performance; when it is clinically significant in such a way that it impacts independence, it warrants a medical diagnosis. For example, all individuals experience some level of anxiety at points in their life, but some individuals experience anxiety to an extent that impacts their daily lives and their ability to function in the world. If the anxiety is determined to be present to the extent that it hurts the person's well-being, a diagnostic label would be provided.          

In the beginning of DSM-5 considerations, APA’s Neurodevelopmental Workgroup met with advocacy groups including the Autism Society, the Autistic Self Advocacy Network and others to solicit feedback and learn about the specific issues important to people living with autism. As part of the revision process, field trials were conducted over 11 sites and involved 2,000 patients to determine the extent to which separate clinicians from separate sites would make the same diagnosis (indicating reliable assessment). Of the 11 sites, 7 were adults (1 geriatric) and four were pediatric. According to information received from the APA, field tests were conducted by trained clinicians using test-retest methods on real patients.              

The goal of APA trials was to find the criteria that lead to the most consistent diagnosis of the same characteristics from place to place and person to person. In other words, if the same individual were to be diagnosed in one clinic and then diagnosed in another clinic by a different diagnostician, he should receive the same diagnosis.    

Reliability was measured using Cohen's Kappa Coefficient, a statistical measure that evaluates the agreement of data between two individuals when they attempt to measure the same thing (qualitative items). Kappa is considered a better measure than a percentage calculation of agreement since it adjusts for the amount of agreement that could be expected simply by chance.
     

• An excellent Kappa value is higher than .6 but less than .8
• A good Kappa value is higher than .4 but less than .6
• An acceptable Kappa value is between .2 and .4
• An unacceptable Kappa value is anything less than .2

Here are some of the data, provided by the APA:          
      

• In the DSM-III the APA reports a Cohen's Kappa value for Autism Spectrum Disorder* was -.01
• In the DSM-IV the APA reports a Cohen's Kappa value for Autism Spectrum Disorder* was .59-.85
• In the field tests for the DSM-5 the APA reports a Intraclass Kappa value for Autism Spectrum Disorder* to be .69 (.58-.8)
• Just for the sake of comparison: in the field tests for the DSM-5 the APA reports the Intraclass Kappa values for ADHD* to be .61, Generalized Anxiety Disorder* to be.2, Posttraumatic Stress Disorder* to be .67 and Boarderline Personality Disorder* to be .55

                *pooled estimates

The Autism Society is particularly focused on preserving services for those who need them. Many have called on the APA to investigate whether individuals on the spectrum would lose services based on a re-evaluation under the new criteria. The issue of service availability (and loss of or reduced services) is one that should not be based solely on a DSM-5 classification.  Any public entity providing services or funding for such services should base support decisions on a needs basis and not solely on a classification or diagnosis.

The Autism Society strongly encourages you to enter this discussion by sending your comments to the APA by June 15.  GRASP has provided some helpful guidance on how to provide comment:  To begin, you have to register. Once you have filed out the form, they will send you a temporary password so you can log in. Then you must go to the specific section that you would like to comment on (in our case, the ASD section). This provides the proposed revision, the rationale and the current criteria from DSM-IV. When you have logged in, a field at the bottom of the webpage is provided for you to submit your comments. Some have experienced difficulty getting their comments in that field to be saved. If this is the case, submit your comments to the APA via email.

The Autism Society works to provide you with details so you may examine all the information with a critical eye and examine (and comment on) potential consequences to DSM-5 revisions based upon data. We know this is a highly emotional issue for our community. Understanding the purpose for revisions and the implications is a critical component to advancing how people living with autism are treated. The Autism Society has commented on the proposed revisions and issued a joint statement on the matter with the Autistic Self Advocacy Network. We will continue to keep you updated with additional information and ways you can get involved in this process.