What do these changes mean to families and service providers?
By Nicole Hess, PhD and Rebecca Schilling, PhD
In the office of most psychologists and other mental health professionals exists a large grey book entitled Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR). Frequently referred to as the DSM, this manual is a “categorical classification that divides mental disorders into types based on criteria sets with defining features.” The DSM is used by psychologists and other providers as a guidebook when forming diagnostic impressions. It has been refined several times since the first DSM was published in 1952 by the American Psychiatric Association.
The DSM has recently been in the subject of much attention in the media and public eye due to the upcoming fifth revision of the manual due in May 2013. Of particular interest to parents and professionals alike is a dramatic change in the conceptualization of and diagnostic criteria used for autism spectrum disorders (ASD). Our hope is to shed some light on the current diagnostic criteria, the proposed changes for DSM-V, and the potential changes in diagnosis and services for families of children with an ASD.
Existing Methods of Diagnosis
The current DSM (DSM-IV-TR) files autism spectrum disorders under the classification of Pervasive Developmental Disorders. Within the Pervasive Developmental Disorders you find the diagnoses of Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rett’s Disorder, and Childhood Disintegrative Disorder. For the purpose of this article, Rett’s Disorder and Childhood Disintegrative Disorder, both much less commonly diagnosed than the remaining three Pervasive Developmental Disorders, will not be discussed.
Autistic Disorder, Apserger’s and PDD-NOS are increasingly common and well known with 1 in 88 children being affected by an ASD.
Professionals make these diagnoses by examining 12 diagnostic criteria divided into 3 domains: impairment in social interactions, impairment in communication, and restricted repetitive and stereotyped patterns of behaviors. Based on the number and pattern of criteria met, a clinician is able to determine which, if any, ASD diagnosis is most appropriate.
In brief, the diagnosis of Autistic Disorder is made for all individuals who meet at least six criteria with a minimum of two symptoms in the social interactions domain, one in the communication domain, and one in the restricted behavior domain. Because such a vast array of potential combinations of symptoms fit the requirements for a diagnosis of Autistic Disorder, this diagnosis captures a wide range of children and adults. As a result, this diagnosis can be appropriate for those with a more classic presentation, such as those who are nonverbal and quite withdrawn and engage in stereotyped behavior much of the time, as well as those who are high functioning and have exceptional verbal and cognitive abilities but struggle in other aspects of socialization, communication, and restricted behavior.
Asperger’s Disorder, similar to high functioning Autistic Disorder, captures a subset of people with no delays in language, cognitive abilities or adaptive skills. The primary distinction between Autistic Disorder and Asperger’s Disorder is that individuals with the latter must meet fewer than 6 out of 12 criteria and have no history of delay in language, cognitive or adaptive skills. PDD-NOS captures individuals with atypical or subthreshold presentations as well as those who have symptoms of an ASD but do not meet full criteria for Autistic or Asperger’s disorders.
This method of diagnosis, if all goes as proposed, is something that you and every professional using the DSM-IV-TR can forget come May 2013.
A New Way to Diagnose
As proposed, the DSM-V will make dramatic changes to the way an ASD diagnosis is made.
To begin, the diagnostic criteria will now be categorized into only two domains: Social Communication and Restricted Interests and Repetitive Behaviors.
The most notable revision is the removal of the separate diagnoses (Autistic Disorder, Asperger’s Disorder, PDD NOS, etc.). There will now only be a single diagnosis, Autism Spectrum Disorder.
This new diagnosis would then be accompanied by a secondary categorization related to the individual’s level of functioning. The severity level is proposed to include a three-tiered system: “requiring support,” “requiring substantial support,” and “requiring very substantial support.”
These suggested levels were previously published along with proposed ASD criteria on the American Psychiatric Association’s website (www.dsm5.org) but are no longer made public as the DSM-V is now in the final stages of revision and printing.
Misconceptions about the new ASD
Understandably, these changes to the way an ASD diagnosis is made, have given rise to concerns. Here are some answers to questions/concerns that parents of ASD children, adults with ASD, and schools may have:
There will no longer be a diagnosis of Asperger’s. What will this mean to me, as an adult with Asperger’s?
Many stories through the popular media have suggested that Asperger’s Disorder will no longer be a recognized diagnosis without clarifying that a majority of individuals currently diagnosed with Asperger’s would meet criteria for Autism Spectrum Disorder in the new DSM. This confusion has led to undue worry for many individuals with ASD diagnoses and their families. The loudest voices seem to come from members of the adult Asperger’s community who have historically taken pride in their diagnoses and unique nature of their personalities. Many feel as though they are losing their identity as the label of Asperger’s gives way to a more generalized conceptualization of ASD.
It is important to remember, however, that just as there was a wide range of behavioral presentations with the separate diagnoses of the DSM-IV-TR, so will there be a wide range of unique presentations with the new criteria. Although the name may change, the Asperger’s communities will still thrive as a positive way for those affected with high-functioning ASD to connect with others who have similar strengths and face similar challenges.
Under the new criteria, will my child lose his/her ASD diagnosis?
There has been much worry from families who fear their children will lose their diagnosis and thus the services they currently receive. It is our belief that most children who currently have a diagnosis on the autism spectrum will likely continue to qualify for an ASD diagnosis. There may be some children who will in fact no longer be eligible for a diagnosis on the autism spectrum; however, these are children who are likely doing exceptionally well and are likely not qualified for many current services.
What will happen to my child’s school based services? What about services from the Regional Center?
When thinking specifically about school-based services, there is minimal cause for concern as schools have always used separate criteria when determining eligibility for services; in fact, schools in California do not differentiate between the autism spectrum diagnoses when determining eligibility for services. Entities, such as the Regional Centers, who relied upon distinct criteria to determine if a child was eligible or not eligible for services will have to generate new eligibility guidelines.
Many “what-ifs” remain when discussing the major revisions to the DSM-V diagnostic criteria for ASD. Despite much media uproar regarding the changes, it is our belief that the new criteria will appropriately conceptualize the challenges faced by those with an autism spectrum diagnosis and capture difficulties that past criteria did not, such as the all-to-common sensory difficulties faced by many with ASD. The shift will not be seamless, and many professionals, insurance companies, schools, government agencies, and the like will face the challenge of modifying their current practices. Nevertheless, the new criteria will likely better distinguish between individuals significantly affected by symptoms of ASD and those who face mild, subclinical difficulties with socialization, communication, and restricted or rigid behavior.
Drs. Hess and Schilling are licensed psychologists who have extensive experience in the mental health field. They have specialized in comprehensive psychological assessment of children and adults with a particular emphasis in the assessment of autism spectrum disorders. They also have background in the development and implementation of treatment interventions for children with a wide range of special needs. Drs. Hess and Schilling established Foundations Psychological Services in the Willow Glen area of San Jose to serve families and adults seeking compassionate and thorough assessment and diagnosis. To contact Dr. Hess or Dr. Schilling, please send an email to firstname.lastname@example.org.Rebecca Schilling, PhD
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