CHANGING THE WAY WE DIAGNOSE AUTISM 1 This is a pre-publication version of the article published in the Journal of Clinical Practice in Speech Language Pathology Changing the way we diagnose autism: Implications for policy and practice David Trembath Griffith Health Institute, Griffith University, Queensland, Australia Key words: Autism, Diagnosis, Policy, Practice Bio: David is Senior Lecturer and NHMRC Early Career Research Fellow at Griffith University. Correspondence: David Trembath Speech Pathology Department School of Allied Health Sciences Griffith University QLD 4222 D.Trembath@griffith.edu.au
CHANGING THE WAY WE DIAGNOSE AUTISM 2 Abstract 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 5 th 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.
CHANGING THE WAY WE DIAGNOSE AUTISM 3 Changing the way we diagnose autism: Implications for policy and practice Our 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 4 th to the 5 th 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., Paul, 2013; Autism Speaks, 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.
CHANGING THE WAY WE DIAGNOSE AUTISM 4 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 sub-group 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 sub-categories (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
CHANGING THE WAY WE DIAGNOSE AUTISM 5 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 meet criteria for ASD under DSM-IV, but not the more stringent DSM-5. The consultations were conducted in each State and Territory in the middle of 2013, with a final report published at the end of the year (Department of Social Services, 2013). With regard to diagnosis and funding, in essence, nothing has changed since the release of DSM-5. The Government s policy response has been to declare that children may receive funding through the Department of Social Services if they have a conclusive and acceptable diagnosis of either Autism, Autism Spectrum Disorder, Autistic Disorder, Asperger s Disorder, Childhood Disintegrative Disorder, or PDD- NOS. Notably, the DSM-IV diagnosis of Rett s Disorder is no longer seen as a mental health disorder (like ASD) following the identification of its genetic basis, and children with Rett s Disorder now receive funding through the alternative Better Start package. Essentially, for the purposes of funding, children can be diagnosed with autism based on the criteria published in the 3 rd edition of the DSM (American Psychiatric Association, 1994) onwards, highlighting the relevance of the core symptoms of ASD, which have remained unchanged over time, in determining eligibility for funding. Accordingly, this policy decision means that there has so far been little impact on practice with regards to diagnoses and funding of speech pathology services for children with ASD and their families. But what impact have changes in the diagnostic criteria had on the availability of services to children presenting with sub-threshold ASD symptoms, who did not meet the specific criteria for Autistic disorder under DSM-IV, but rather one of the
CHANGING THE WAY WE DIAGNOSE AUTISM 6 broader autism spectrum sub-classifications (e.g., Asperger s Disorder, PDD-NOS)? Research to date indicates that approximately 10% of children previously diagnosed with ASD using DSM-IV, would not meet the DSM-5 criteria, particularly those with PDD-NOS (Lohr & Tanguay, 2013). Instead, these children with sub-threshold ASD symptoms are most likely to be diagnosed with the new diagnostic label of Social Communication Disorder under DSM-5, which does not attract specialist funding for services. Given that diagnosticians in Australia are currently free to choose whether they use DSM-IV or DSM-5 for the purposes of determining eligibility for funding in (Department of Social Services, 2013), it is possible that the same child presenting with the same needs at two different diagnostic assessments, could leave one assessment with a diagnoses that confers specialist funding and the other without, simply based on the criteria used. Presumably, this opens the gate for inconsistent application of diagnostic criteria within and across diagnosticians, with clinical and ethical implications. The Department of Social Services has indicated that they will review their policy regarding support for children diagnosed with Social Communication Disorder in late 2014, once data regarding the rate of diagnosis and support needs become clearer. Despite concerns regarding the impact on research, a non-systematic review of the recent studies in the Journal of Autism and Developmental Disorders and other key journals in the ASD field reveals no reference to the DSM-5 changes posing a major barrier to conducting research or interpreting findings. In fact, the changes have coincided with increasing calls (e.g., Trembath & Vivanti, 2014) for a greater focus on individual differences in ASD research, with less reliance on broad diagnostic labels and a greater focus on the each person s individual strengths, needs, and learning profile. Tightening the criteria to exclude children with sub-threshold ASD
CHANGING THE WAY WE DIAGNOSE AUTISM 7 symptoms, many of whom would meet the criteria for Social Communication Disorder, may have some impact as presumably, including children with subthreshold symptoms in treatment studies leads to greater treatment effects. It remains to be seen whether researchers will move quickly to adopt DSM-5 criteria in acknowledging this issue, and whether journals will adopt standards regarding participant diagnoses. At the time of writing, a PubMed search using the term Social Communication Disorder revealed no clinical trials, suggesting that research examining the nature and outcomes of this disorder is still in development. In looking forward to the next 12 months and beyond, it is difficult to predict what future impact the changes in diagnosis will have on policy and practice. In Australia, the National Disability Insurance Scheme is currently being trialed in a number of sites, with the view to full rollout in 2016-2018. It is likely that the advent of this scheme will see diagnosis-specific funding (e.g., the Helping Children with Autism Package) replaced with the comprehensive scheme. Yet the mechanisms by which funding under the NDIS will be allocated are still being developed. If the scheme is based on needs, rather than diagnosis, it may be tempting policy makers to look to the new severity ratings described in DSM-5 for guidance as to the level of funding required. Participants in the Department of Human Services consultation process last year expressed clear opposition to any such approach (Department of Social Services, 2013), and the sentiment is echoed in the research literature (Vivanti et al., 2013). The Department has acknowledged work currently underway at the Karolinska Institutet Center of Neurodevelopmental Disorders (KIND) to develop a core set of descriptors for ASD that will provide a universally accepted framework for describing individual functioning within the International Classification of Functioning,
CHANGING THE WAY WE DIAGNOSE AUTISM 8 Disability and Health (ICF Research Branch, 2014). Similar core sets are available for individuals with other developmental disabilities (e.g., cerebral palsy) and so have the potential to provide a consistent and useful approach for measuring individual needs. It also remains to be seen what impact, if any, the changes in diagnostic criteria may have on the culture of autism, particularly for individuals who identify themselves as having Asperger s Disorder. Presumably, it is the explanatory power of the diagnosis of ASD in helping people understand themselves and others that may confer a sense of self-understanding and identity, rather than the diagnostic label itself. To date no research examining the possible impact of changes in the diagnostic criteria on sense of self-understanding and identity amongst individuals with ASD have been published. However, it would seem likely that just as diagnosticians may continue to choose which criteria they feel are most suitable to describing individual strengths, needs, and learning profiles, so will individuals with ASD who choose to share their diagnosis with others. It is perhaps worth noting that speech pathologists have always highlighted the importance of focusing on the strengths, needs, and learning profiles of each child, adolescent, and adult with whom they work. Accordingly, only major future policy changes affecting service provision would likely impact on the day to day, evidence-based services and supports they provide to individuals with Autism, Autism Spectrum Disorder, Autistic Disorder, Asperger s Disorder, Childhood Disintegrative Disorder, or Pervasive Developmental Disorder Not Otherwise Specified and their families.
CHANGING THE WAY WE DIAGNOSE AUTISM 9 References American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders - 3rd Edition, Washington, DC, American Psychiatric Association. American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders, Arlington, VA, American Psychiatric Association,. Autism Speaks (2013). Answers to frequently asked questions about DSM-5 [Online]. Autism Speaks. Available: http://www.autismspeaks.org/dsm-5/faq [Accessed 14/03/14 2014]. Department of Social Services (2013). DSM-5: Development of a policy response for the Helping Children with Autism (HCWA) package Canberra: Australian Federal Government Department of Human Services. Grzadzinksi, R., Huerta, M., & Lord, C (2013). DSM-5 and autism spectrum disorders (ASDs): an opportunity for identifying ASD subtypes. Molecular Autism, 4, 12. ICF Research Branch (2014). ICF Core Set for Autism Spectrum Disorder (ASD) [Online]. Switzerland: ICF Research Branch. Available: http://www.icfresearch-branch.org/icf-core-sets-projects-sp-1641024398/other-healthconditions/icf-core-set-for-autism-spectrum [Accessed 14/03/14 2014]. Lohr, W. D. & Tanguay, P. (2013). DSM-5 and proposed changes to the diagnosis of autism. Pediatric Annals, 42, 161-6. Mahjouri, S. & Lord, C. (2012). What the DSM-5 portends for research, diagnosis, and treatment of autism spectrum disorders. Current Psychiatry Reports, 14, 739-47.
CHANGING THE WAY WE DIAGNOSE AUTISM 10 Paul, D. (2013). Yes, DSM-5 Changes SLP-Relevant Disorder Categories: What You Need to Know [Online]. American Speech-Language-Hearing Association. Available: http://blog.asha.org/2013/06/18/yes-dsm-5-changes-upcommunication-disorder-categories-what-you-need-to-know/ [Accessed 15/03/14 2014]. Trembath, D., & Vivanti, G. (2014). Problematic but predictive: Individual differences in children with autism spectrum disorders. International Journal of Speech Language Pathology, 16, 57-60. Vivanti, G., Hudry, K., Trembath, D., Barbaro, J., Richdale, A., & Dissanayake, C. (2013) Towards the DSM-5 Criteria for Autism: Clinical, Cultural, and Research Implications. Australian Psychologist, 48, 258 261.