JCPSLP July 2014_Vol16_no2

Invited paper

Changing the way we diagnose autism Implications for policy and practice David Trembath

The purpose of this review is to discuss the policy and practice implications of recent changes to the diagnostic criteria for autism spectrum disorder (ASD), as set out in the Diagnostic and Statistical Manual – 5th Edition (DSM-5) of the American Psychiatric Association. In Australia, government has so far responded by accepting both the new, and previous, diagnostic criteria, for the purposes of determining children’s eligibility for specialist ASD funding. Yet there is evidence that some children who meet criteria for ASD under DSM-IV, may not meet criteria under the more stringent DSM-5 criteria, moving forward. A summary of the changes most likely to impact on policy and practice, as well as the implications of the changes for research and the culture of ASD, is presented. O ur understanding of autism continues to evolve based on scientific discoveries and changes in society. Indeed, when we say a child has autism, we simply mean that he or she displays a set of behaviours that we judge to be consistent with those described in the diagnostic criteria in use at the time. In Australia, the most commonly used diagnostic criteria for autism are those set out in the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association (2013). These criteria recently changed, with the transition from the fourth to the fifth edition of the DSM, sparking renewed debate regarding what autism is, and is not, as well as widespread interest in the implications of these changes in criteria for research, policy, and practice. According to the DSM-5, autism spectrum disorder (ASD) is a mental health disorder characterised by core impairments in social-communication development and behaviour, which affect individuals differently leading to a spectrum of individual strengths and needs (American Psychiatric Association, 2013). The everyday impact of ASD for each person is described in terms of “severity levels” that correspond to the amount of support he or she requires to participate in everyday activities including life at home, school, work, and in the community. Many resources

are available that provide comprehensive overviews of the changes that have occurred in transitioning from DSM- IV to DSM-5 (e.g., Autism Speaks, 2013; Paul, 2013). The purpose of this commentary is not to repeat this information, but to focus on those changes that are most likely to impact on speech pathology policy and practice in the Australian context. In the lead-up to the release of DSM-5, there was a great deal of speculation about the possible impacts of changing the diagnostic criteria for ASD. My colleagues and I, for example, noted that comparing the results of treatment studies could become difficult if children were diagnosed using different criteria (Vivanti et al., 2013). We noted that the new criteria are likely to be more stringent, because (a) there are fewer combinations of symptoms that can lead to a diagnosis of ASD, (b) the ASD subgroup classification of pervasive developmental disorder not otherwise specified (PDD-NOS) for children with sub-threshold symptoms was removed, and (c) children must now display a minimum of two examples (instead of one) of repetitive, restricted, or ritualistic interests and behaviours. Accordingly, we raised concerns that children who do not meet the more stringent criteria for ASD in DSM-5, but who would have met criteria under DSM-IV, may no longer have access to diagnoses-based funding, despite having identified social, communication, and behavioural needs. We also questioned whether there would be a shift in the culture of ASD, whereby individuals who proudly identify as having Asperger’s disorder may experience a sense of “loss of identity” with the removal of the subcategories (autistic disorder, Asperger’s disorder, childhood disintegrative disorder, PDD-NOS) in the new DSM-5 criteria. These concerns, as well as our enthusiasm for some aspects of the changes, were echoed by others (e.g., Grzadzinski et al., 2013; Mahjouri & Lord, 2012) and prompted governments and service providers to consider their responses to the proposed changes. In Australia, the federal government Department of Social Services, which is responsible for the provision of ASD- specific funding packages to families, engaged in a national consultation process with experts and stakeholders in the field of ASD to formulate its policy response to the changes in DSM-5. Presumably, the two most pressing needs at the time of the consultation were to determine which diagnoses of ASD would make a child eligible for ASD-specific funding (e.g., the Helping Children with Autism Package) and what funding support would be available to children who would

KEYWORDS AUTISM DIAGNOSIS POLICY PRACTICE

David Trembath

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JCPSLP Volume 16, Number 2 2014

www.speechpathologyaustralia.org.au