ACPA THE AUSTRALIAN CLINICAL PSYCHOLOGY ASSOCIATION

AUSTRALIAN CLINICAL PSYCHOLOGIST ISSN 2204-4981 VOL 1: ISSUE 2, JUN 2015

www.acpa.org.au

CONTENTS – Volume 1, Issue 2, June 2015

Editorial 3 Kaye Horley

From the President 4 Judy Hyde The Neural Basis of Autism and Autism Comorbidity: A Review 5 Ashleigh Saunders and Karen E Waldie Autism Assessment Measures 11 Dixie Statham Conducting Developmental and Cognitive Assessments with Young Children with Autism Spectrum Disorders 14 Jessica Paynter and Hannah Fothergill Autism and Education in Australia 21 Jacqueline Roberts The Secret Agent Society Social-Emotional Skills Training Program for Children with Autism Spectrum Disorders 27 Renae Beaumont High-functioning Autism Spectrum Disorders in Adulthood: Investigating Factors that Influence Psychosocial Outcomes. 30 David Zimmerman, Tamara Ownsworth, Analise O’Donovan, Jacqueline Roberts and Matthew J Gullo Engagement with the Autism Community: Beyond Tokenism? 44 Janine Robinson and Marie Claire Shankland Client and Carer Perspective 48 Thomas and John Early Career Clinical Psychologist Forum Report 51 Matthew Csabonyi

55 Editorial Policy and Guidelines

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EDITORIAL Socialisation deficits, particularly social reciprocity, are

principle features of ASD, and may result in peer rejection, Kaye Horley, PhD victimisation and loneliness, with resultant detrimental and Editor1 challenging effects upon one’s sense of identity and social

construction of the world. Interventions addressing such

difficulties are essential. An innovative evidence-based Autism spectrum disorders (ASDs) are considered program aimed at teaching social and emotional skills to the most common of the pervasive neurodevelopmental children at the higher end of the spectrum is the disorders. Initial nosological categories, such as DSM-1 internationally recognised Secret Agent Society program. As (American Psychiatric Association, 1952), classified children described by Beaumont, who developed the multi-faceted with autism as having childhood schizophrenia. The most program, it entails various strategies tailored to engage and recent, DSM-5 (American Psychiatric Association, 2013), places monitor the progress of children, and has a strong theoretical children on a spectrum, inclusive of a broader category of ASD, basis. characterised by communicative, social and behavioural difficulties. An Australian national survey (Australian Bureau of Although problems with ASD continue into Statistics, 2012), indicated a prevalence of 0.5% (115,400), with adulthood, there is much less research focused on this age a significantly greater incidence in males (0.8%) compared to group. Notably, there is limited empirical research regarding females (0.2%). psychosocial outcomes in higher functioning ASD adults. In

PhD Spotlight, Zimmerman’s PhD seeks to redress this by The aetiology of autism is unknown, however, examining such aspects as the relationship between the modern theories have come a long way since Kanner (1943) severity of ASD and functioning, the relationship between laid the blame on parents. In this issue of the Australian Clinical symptomatology and functioning including neurological, Psychologist, current biological theories are discussed by cognitive and emotional, and the development and testing of a Saunders and Waldie. In examining the neural basis of autism, psychosocial explanatory model. The consequence of impaired they highlight the evidence for a strong genetic component, social functioning is typified in the problems adolescents and although the contribution is small. Since understanding the adults with ASD encounter in developing romantic brain leads to understanding the mind, the authors place relationships. emphasis upon brain anatomical and functional differences in

ASD in comparison to healthy populations, and relate these Collaboration with the autism community, those with anomalies to specific social, cognitive and behavioural deficits. ASD, their families and carers, should be inclusive in policy and The added complexity of comorbidity is additionally service planning, but is not always apparent. An example of considered, particularly those of ADHD and OCD. meaningful engagement between community and services

was the formation of the Scottish Strategic Group for Autism, Early detection of ASD is essential to enable provision specifically formed to redress this imbalance. Robinson and of interventions as early as possible. Statham provides an Shankland report on the differing priorities of community and overview of a number of common standardised tests, service planners, and highlight the ensuing benefits of the describing the purpose, range of behaviours and level of collaboration. We are very appreciative of Thomas in answering severity measured, target population, administration and questions provided by Autism Spectrum Australia, giving us his scoring, reliability and validity and ease of use. Assessment is personal story to help us understand and gain insight into the examined in relation to the more general developmental and experience of someone with autism. His father, John, provides intellectual impairments that may be associated with ASD by insight into his experience as a parent. Paynter and Fothergill. Consideration is given to the social, communicative and behavioural deficits characterising ASD that The outcome of a forum that provided the present many challenges for clinicians conducting opportunity for early career qualified clinical psychologists to assessments in young children, and practical suggestions are meet and discuss the key issues they face along with potential provided. solutions, is reported by Csabonyi, and has implications for us

all. School attendance presents new challenges for children on the autism spectrum. As Roberts emphasises, References impaired functioning and problematic behaviours may result in a range of issues. These may include difficulties in American Psychiatric Association. (2013). Diagnostic and statistical understanding and learning, inability to fit in with peers, manual of mental disorders, (5th ed). Washington, Arlington, VA. bullying, academic difficulties, poorer attendance rates and American Psychiatric Association (1952). Diagnostic and statistical poorer post-school outcomes. Understanding the specific manual of mental disorders. Washington, Arlington, VA. challenges faced by school-aged children allows for Australian Bureau of Statistics, (2012). The survey of disability, ageing and engagement in individualised behavioural interventions most carers (SDAC). Canberra: Australian Government Publishing Service. effectively provided by a multidisciplinary team. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

1 Editor: [email protected]

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From the President

Judy Hyde, PhD

Happy Birthday ACPA! April, 2015 celebrates the 5th In keeping with our mission to promote high anniversary of the foundation of ACPA. These have been standards throughout the profession, ACPA will continue to important years in the history of clinical psychology in Australia. encourage the Psychology Board of Australia (PBA) to simplify For the first time clinical psychology has had its own voice that the pathways to registration and provide greater clarity of the speaks clearly about the importance of and value in training in routes that have led to the endorsement of unqualified clinical producing well-qualified and capable clinical psychologists who psychologists through specialist recognition of those who are offer safe and effective evidence-based services to the public qualified. With the large take-up of the 5 + 1 generalist with a high level of professionalism. The fact that qualified registration program of training, the confusion over the clinical psychologists have the highest level of training in different pathways to registration has increased, as has the size psychology of any mental health professional, and need to be of the workforce. Australia has the largest per capita number of identified for the expert contribution they can make to the psychologists in the Western world; yet Australia’s standards of mental health of Australians, is becoming increasingly training, even with the 5 + 1 model, remain the lowest in the recognised at all levels of society. Western world. It is time to seriously consider raising standards in the best interests of the public. ACPA celebrates this important milestone with the implementation of a Fellows program. This program Further in keeping with the mission of promoting recognises outstanding, exceptional and enduring recognition of the value and quality of training in clinical contributions of members to ACPA and to clinical psychology. psychology, ACPA is in the process of developing and The current ACPA National Board has nominated all Directors of consulting on an application to the PBA for them to make a the Inaugural Board for Fellowship in recognition of their submission to grant qualified clinical psychologists specialist outstanding contribution to the establishment of ACPA and recognition. The membership of ACPA has embraced this their ongoing work and commitment to the organisation. The application and provided support for the submission being Inaugural Board took on the task of establishing ACPA and made. The contribution of members to the process is very developing the structures and procedures to create this much appreciated and demonstrates the significance of the wonderful organisation. This was an overwhelming amount of listserv yet again in forwarding our aims and objectives, as we work undertaken with dedication, determination and reach out to members for information and receive commitment, flavoured by humour and driven by shared overwhelming support. passion. Also being nominated for Fellowship by the National Board are Dr Cal Paterson and Mr Ben Callegari, whose gifts and This year again promises to be a time of change and skills established the first website and branded ACPA with the development for the profession as the impacts of the stylish, clean, fresh look we are so proud of. The National Board recommendations of the National Commission into Mental will hold a dinner to celebrate the achievements of these Health are considered and implemented. This is likely to have members in Sydney later in the year where the honour of far-reaching effects and ACPA wants to play a role in ensuring Fellow will be bestowed and certificates presented. that specialist services are provided by those with the best training to deliver them. In change there is opportunity and we Guidelines for the application process for the honour look forward to taking those opportunities we are presented to of Fellow of ACPA (FACPA) will be released, along with the ensure the best utilisation of the expertise of qualified clinical forms. A Nominations Committee will also be established to psychologists. review nominations for the membership status of Fellow and also to advise the Board on the required skills of Directors of the Board and identify members who may be suitable to serve on the Board in all its roles.

A further member benefit being implemented to celebrate ACPA’s fifth birthday is free membership for a year for any member who brings in a new fee-paying member. The Application for Membership form includes a space for the applicant to nominate a current Associate or Full Member for this benefit. The benefit can only be claimed once.

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The neural basis of Autism and Autism Comorbidity: A review

Ashleigh Saunders and Karen E Waldie, PhD

School of Psychology, Faculty of Science University of Auckland, New Zealand

Abstract

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition for which there is no known cause or cure. It is a highly variable disorder, the most prominent difficulties of which include aberrant behaviour, poor social skills and disrupted communication skills. Evidence suggests that the prevalence of ASD is steadily rising and this has led to widespread speculation and research concerning the causes of the disorder. Following about 50 years of intensive study, researchers now believe that autism is a complex disorder whose core aspects have distinct causes that often co- occur. Some of these distinct causes are the focus of this review. We focus on findings that suggest that children with ASD have larger overall brain volumes and differences in brain growth trajectory. By adulthood those with ASD have anatomical and functional abnormalities in prefrontal cortex, basal ganglia, temporal lobe, and the limbic system. Impairments in these areas, as well as under-connectivity between and within these brain regions, can lead to range of interrelated deficits in interpersonal interaction such as problems remembering and identifying people, the inability to perceive social cues, and misunderstanding nonverbal communicative cues such as gestures, facial expressions, and emotional prosody. The presence of comorbid conditions compounds these difficulties.

2Much of the phenomenology of autism can be responses to environmental objects and events, an obsessive described in terms of a triad of impairments in social, desire for sameness; and excellent memory. Kanner labelled communication and behavioural domains. Such impairments this condition ‘early infantile autism’. One year on, Hans can result in stereotyped movements, an insistence of Asperger (1944) described a group of children using similar sameness, delayed speech including echolalia, and aberrant terminology. In addition to these characteristics, however, he behaviour. There is a failure to develop normal social also noted that the children had developed normal language, interactions and relationships with others. Autism is usually but the content of their speech was slightly abnormal, tending noticed by caregivers in the first or second year of life by to be pedantic. The symptoms characteristic of this higher distinguishable differences in language ability, repetitive functioning group became known as Asperger’s syndrome. behaviour and/or preoccupation with objects (DiCicco-Bloom et al., 2006). A diagnosis of autism typically follows shortly There have been recent changes to the Diagnostic after. While therapy such as Applied Behaviour Analysis (ABA) and Statistical Manual of Mental Disorders (DSM-5; American has been shown to be an effective tool in helping individuals Psychiatric Association, 2013). According to the clinical manual, with autism manage their difficulties (Peters-Scheffer, Didden, ‘Asperger’s syndrome’ no longer exists as a label to describe Korzilius, & Sturmey, 2011), autism is a lifelong condition for high-functioning autism. Instead, all individuals with autism are which there is no cure (American Psychiatric Association, considered to lie on part of a spectrum, with very low 2013). functioning people on one end (who will be mute with general cognitive impairments) and high functioning people on the The aim of this review is to provide a broad overview other end (who will have normal or higher IQ and difficulties of a few of the current theories as to the biological causes of with social interaction); all are considered under the umbrella autism, and the role of comorbid conditions in altering the term Autism Spectrum Disorders (ASDs). Here we use the phenotype of autism. Clarification of these factors will not only term autism interchangeably with ASD to refer to all individuals be helpful for health professionals, who could make more on the spectrum. accurate diagnoses and therefore prescribe more accurate treatment, but also for researchers who need to clarify the role The prevalence of ASD is estimated to be 60 in coexisting conditions play in research. 10,000 (0.6%), with a male:female ratio of 4:1 (Fombonne, 2005). The prevalence of autism has been steadily rising Background and Prevalence (Atladóttir et al., 2007; Elsabbagh et al., 2012), with estimates from 4/10,000 to 66/10,000 over a ten year period (Hill, Leo Kanner (1943) first described autism after Zuckerman, & Fombonne, 2014) leading to widespread observing a group of patients with similar impairments. The speculation concerning the factors that may be responsible. patients who he had seen in his clinic all exhibited: an inability to relate to people; failure to develop speech; abnormal Little is known about the underlying basis of comorbidity in autism. Data suggest approximately 28% have an additional diagnosis of ADHD and 41% to have anxiety 2 Corresponding author: [email protected] (Simonoff et al., 2008). The presence of these additional conditions causes the individual pronounced distress and impairment (Leyfer et al., 2006). Those with additional

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conditions are thought to have more severe symptoms, more neuronal networks mostly in the frontal lobe (anterior pronounced social difficulties and are lower functioning that cingulate gyrus, middle cingulate gyrus) and posterior areas of those with ASD alone (Kerns & Kendall, 2012). the brain such as the striatum, basal ganglia, and the insula (which is folded deep within the lateral sulcus, separating the Genetic Inheritance temporal lobe from the frontal lobes).

Greater total brain volume. Magnetic Resonance Imaging Research using a variety of techniques has shown (MRI) data reveals that by age two to four years, 90% of autistic that the connectivity of posterior regions to prefrontal cortex is children have a significantly larger average brain volume than atypical in people with ASD. For example, diffusion tensor neurotypical controls (Akshoomoff, Pierce, & Courchesne, imaging (DTI), which measures white matter connectivity, 2002; Courchesne, 2004) This is particularly the case in the indicates that those with autism show abnormal anatomy of dorsolateral frontal cortex (Carper & Courchesne, 2005; Hua et fronto-striatal white matter tracts (Langen et al., 2014). al., 2013). The over-production of brain cells eventually slows Functional MRI imaging (fMRI), able to measure functional down as the autistic child develops (Courchesne, Campbell, & connectivity between brain areas during task performance, Solso, 2011; Schumann et al., 2010). corroborate the structural findings. The inhibition circuitry is under-activated and less synchronised in individuals with In addition to MRI studies, autopsy data also reveals an autism compared to neurotypical controls (Kana, Keller, excess of neurons in the prefrontal cortex among young Minshew, & Just, 2007). Resting state functional MRI or children with autism (Stoner et al., 2014). Young children with electroencephalography (EEG) recording can measure cortical autism also exhibit more cortical (18%) and cerebellar (39%) synchronisation in the absence of task performance. Abnormal white matter than controls (Akshoomoff et al., 2002; resting state cortical connectivity between frontal and Courchesne, 2004). Although the over-production of neurons posterior regions has similarly been found in individuals with is a normal feature of brain development, typical development autism (Cherkassky, Kana, Keller, & Just, 2006; Murias, Webb, involves the subsequent pruning of excess neurons and Greenson, & Dawson, 2007). synapses. This is one of the general principles in brain plasticity, and the elimination of synapses coincides with increasing Though there is great variability in symptom severity cognitive and motor skill in the typically developing child. In the and intellectual functioning in ASD, all individuals with autism case of autism, however, the normal pruning of excess have social difficulties involving eye contact, reciprocal neurons and their connections appears to be faulty, leading to interactions, and responding to emotional cues. The following abnormal white matter connectivity. section describes research that suggests that these social difficulties may be the result of the nature of face processing Taken together, the particular neural defects that in autism. The brain areas involved in our ability to attend to and cause early brain overgrowth may underlie the neural basis of process information from faces (fusiform face area and autism. Although it is unclear what causes this grey and white amygdala) may be impaired in people with autism. matter overgrowth, one finding relates to fewer and/or abnormal connections between areas of the brain involved in Face processing and brain connectivity. Children with ASD inhibitory control and face recognition, namely the frontal perform worse on face processing tasks including face cortex, temporal cortex, and amygdala. discrimination and face recognition. In very young children, the ability to use facial information (for example, engaging in joint Inhibitory control and brain connectivity. Executive functioning attention) is considered a critical early marker of ASD deficits and social difficulties seen in autism are often (Zwaigenbaum, Bryson, Rogers, Roberts, Brian, & Szatmari, associated with problems in the frontal cortex and with the 2005). Individuals with ASD also process faces using abnormal circuits leading to and from the frontal lobe. strategies. They pay less attention to core features of the face like the eyes and nose relative to typically developing adults Executive functions include planning, working (Dawson, Webb, & McPartland, 2005). memory, attention, problem solving, verbal reasoning, mental flexibility, task switching, and monitoring of actions, and In a series of fMRI experiments, Robert Schultz inhibitory control. Inhibitory control allows individuals to discovered that, at the basic neural level, a face is just another withhold dominant responses or ignore distracting stimuli in object for people with autism. He typically asked participants to order to give an appropriate response. In real-world situations press a button to indicate whether pairs of faces or pairs of inhibitory control is important as it stops us from performing a objects (e.g., cups, chairs) were the same or different. The potentially inappropriate action when given the urge (e.g., an findings revealed that neurotypical individuals primarily use the extreme emotional outburst). Withholding inappropriate urges fusiform gyrus (known as the fusiform face area) when is a necessary criterion for performing socially appropriate processing faces and the inferior temporal gyrus to process behaviour. the objects. In contrast, participants with autism used the inferior temporal gyrus for both the chairs and the faces Inhibitory control deficits and repetitive behaviour are (Schultz, 2005; Schultz, Gauthier, Klin, Fulbright, Anderson, part of the core features of autism. The communication and Volkmar, et al., 2000; Schultz, Grelotti, Klin, Kleinman, Van der integration of specific brain networks are vital in order for the Gaag, Marois et al., 2003). successful execution of motor and executive functions. Inhibitory control, in particular, requires synchronisation of

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In addition to neglecting the fusiform face area when Atypical connectivity may underlie many difficulties responding to faces, individuals with autism have impaired seen in autism. Interestingly, the fronto-striatal pathway is also connectivity between the right fusiform gyrus and the impaired in individuals with ADHD (Wu, Gau, Lo, & Tseng, 2014) amygdala. The amygdala itself also is abnormally large in autistic and executive functioning deficits are among the core features children (Schumann et al., 2010). The amygdala measures just of ADHD. As there are high rates of comorbidity between an inch long, resides deep inside the brain and is shaped like an autism and ADHD (Talkowski, Minikel, & Gusella, 2014) we now almond. It plays a significant role in facial expression and need to know how this pathway functions in individuals with emotion processing (Bauman & Kemper, 2003; Skuse, 2003) just one or both conditions (Vissers, Cohen, & Geurts, 2012). and, if the amygdala is damaged, there is difficulty recognizing strong emotions such as fear (Adolphs, Tranel, Damasio, & ASD and OCD. OCD in ASD is common (37% of those with ASD Damasio, 1994). In neurotypical individuals, the amygdala is have OCD; Leyfer et al., 2006), and contributes to a reduced significantly more activated when a fearful face is perceived as quality of life. There are numerous similarities between OCD opposed to a neutral face (Morris et al., 1998). and ASD. As such, behaviours like repetition feature in the diagnostic criteria for both conditions. People with OCD and Kleinhans and colleagues (2008) found that the ASD may both have obsessions about a particular event degree of social impairment in those with autism was occurring (for example, repetition of certain numbers, like car associated with decreased connectivity between the amygdala registrations). The phenotype of repetitive behaviour is and the fusiform face area. Social impairment was measured strongly linked to the certain brain pathways. Changes in the with the Autism Diagnostic Interview-Revised (ADI-R) social striatum have been linked to repetitive behaviour seen in ASD score. This negative correlation between amygdala- fusiform (Langen et al., 2012). There is also consistent support for the face area connectivity and the ADI-R score (Kleinhans et al., involvement of orbito-frontal striatal systems in OCD (Harrison 2008) suggests that abnormalities in the connections between et al., 2013) and in ADHD (Cubillo, Halari, Smith, Taylor, & Rubia, the emotional centre of the brain and the face processing area 2012). Taken together, there seems to be a common brain plays an important role in the social skills difficulties in autism. basis to the repetitive behaviour seen in all three disorders.

More research into comorbidities is needed so that Comorbidity in Autism clear boundaries can be established between those behaviours that are distinct from the condition of ASD (that represent a Comorbidity is defined as the co-occurrence of two clearly different disorder) and those that are manifestations of or more conditions in the same individual (APA, 1994). ASD itself. There is no treatment for ASD. However, there are Physically, ASD is associated with higher rates of epilepsy, well established treatments for conditions such as OCD or sleep disorder, gastrointestinal disorders and autoimmune ADHD. Identifying behaviours that are indeed manifestations conditions (Matson & Goldin, 2013). Additional of comorbid conditions will allow for appropriate treatment of neuropsychological conditions like Attention Deficit these behaviours. This will greatly reduce the distress that arise Hyperactivity Disorder (ADHD) and anxiety (particularly from symptoms of comorbid conditions ASD. Obsessive Compulsive Disorder (OCD)) are known to affect between 50-70% of individuals with ASD (Ghaziuddin & Zayfar, Summary and Conclusions 2008). While little is known about the underlying basis of comorbidity, the presence of these additional conditions Autism is a heritable and lifelong causes the individual pronounced distress and impairment. For neurodevelopmental disorder with an increasing prevalence. example, those with additional conditions are thought to have Although genetic factors play an important role in autism more severe symptoms, more pronounced social difficulties aetiology, many different genes can contribute to the ASD and are lower functioning that those with ASD alone (Kerns & phenotype. The most robust neurological finding to account Kendall, 2012). for autism is greater brain volume. The early brain overgrowth and related dysfunction is most strongly evident in the ADHD and ASD. There are many overlapping symptoms prefrontal cortex. Other sites of regional gray and white matter between the two disorders including: attention difficulties, overgrowth include the temporal cortex and amygdala. hyperactivity, impulsivity (Hays, Reas, & Shaw, 2002), social skill deficits (Cervantes et al., 2013; Demopoulos, Hopkins, & Davis, Many of the characteristic features of ASD can be 2013), behavioural issues (Mayes, Calhoun, Mayes, & Molitoris, described in terms of specific cognitive deficits, which 2012) and both are associated with differences in the together conspire to make it hard to communicate effectively prefrontal cortex (Johnson, 2012). and to develop and maintain social relationships. Abnormal inhibitory control (of motor and general cognitive skills), and Previously, the DSM-IV (APA, 1994) did not allow the atypical face processing, are thought to underlie such features. co-diagnosis of ASD and ADHD. Researchers working on the These, in turn, can be partially explained by atypical connectivity latest version of the DSM (DSM-5; APA 2013) removed this between the frontal lobe and striatum (including basal ganglia), prohibition of co-morbidity. Thus, individuals with autism and between the temporal cortex and amygdala. Interestingly, spectrum disorder may also have a diagnosis of ADHD. A many of the brain networks involved in autism are similar to better understanding of the aetiology of autism and its those that are implicated in common coexisting conditions like associated conditions will help with earlier diagnosis and ADHD and OCD. Identifying the underlying brain networks of treatment strategies. the difficulties seen in ASD (and especially those that share a common basis with other conditions) will allow for more appropriate treatment options.

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S., Kauchali, S., Marcín, Peters-Scheffer, N., Didden, R., Korzilius, H., & Sturmey, P. (2011). C., … Fombonne, E. (2012). Global prevalence of autism and other A meta-analytic study on the effectiveness of comprehensive ABA-based pervasive developmental disorders. Autism Research, 5(3), 160-179. early intervention programs for children with autism spectrum Fombonne, E. (2005). Epidemiology of autistic disorder and disorders. Research in Autism Spectrum Disorders, 5(1), 60-69. other pervasive developmental disorders. The Journal of Clinical Roberts, A. L., Lyall, K., Hart, J. E., Laden, F., Just, A. C., Bobb, J. F., Psychiatry, 66 (Supplement 10), 3-8. & Weisskopf, M. G. (2013). Perinatal air pollutant exposures and autism Froehlich-Santino, W., Tobon, A. L., Cleveland, S., Torres, A., spectrum disorder in the children of nurses’ health study II participants. Phillips, J., Cohen, B., & Collins, J. (2014). Prenatal and perinatal risk Environ Health Perspect, 121, 978–984. factors in a twin study of autism spectrum disorders. Journal of Sandin, S., Hultman, C. M., Kolevzon, A., Gross, R., MacCabe, J. H., Psychiatric Research, 54, 100-108. & Reichenberg, A. (2012). Advancing maternal age is associated with increasing risk for autism: A review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 51(5), 477-486.

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Schumann, C. M., Bloss, C. S., Barnes, C. C., Wideman, G. M., Stoner, R., Chow, M. L., Boyle, M. P., Sunkin, S. M., Mouton, P. R., Carper, R. A., Akshoomoff, N., & Courchesne, E. (2010). Longitudinal Roy, S., & Courchesne, E. (2014). Patches of disorganization in the magnetic resonance imaging study of cortical development through neocortex of children with autism. New England Journal of Medicine, early childhood in autism. The Journal of Neuroscience: The Official 370(13), 1209-1219. Journal of the Society for Neuroscience, 30(12), 4419-4427. Talkowski, M. E., Minikel, E. V., & Gusella, J. F. (2014). Autism doi:10.1523/JNEUROSCI.5714-09.2010 spectrum disorder genetics: Diverse genes with diverse clinical Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & outcomes. Harvard Review of Psychiatry, 22(2), 65-75. Baird, G. (2008). Psychiatric disorders in children with autism spectrum Vissers, M. E., Cohen, M. X., & Geurts, H. M. (2012). Brain disorders: Prevalence, comorbidity, and associated factors in a connectivity and high functioning autism: A promising path of research population-derived sample. Journal of the American Academy of Child & that needs refined models, methodological convergence, and stronger Adolescent Psychiatry, 47(8), 921-929. behavioral links. Neuroscience & Biobehavioral Reviews, 36(1), 604-625. Skuse, D. (2003). Fear recognition and the neural basis of social Volk, H. E., Lurmann, F., Penfold, B., Hertz-Picciotto, I., & cognition. Child and Adolescent Mental Health, 8(2), 50-60. McConnell, R. (2013). Traffic-related air pollution, particulate matter, and autism. JAMA Psychiatry, 70(1), 71-77.

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Autism Assessment Measures

Dixie Statham, PhD

University of the Sunshine Coast, Australia

3Autism is defined as a neurodevelopmental disorder aggression, self-injury, hyperventilation, and epileptic characterised by deficits in social interaction and features). communication (specifically, in social-emotional reciprocity, non-verbal communication, and establishing, maintaining and The interviewer rates each question on a 4-point understanding social relationships) along with the presence of scale: 0 (behaviour not present) to 3 (definite abnormality), and restricted, repetitive patterns of behaviour, interests, or records detailed behavioural examples that substantiate the activities (specifically, stereotyped/repetitive motor score for each item. Administration and scoring time ranges movements, use of objects, or speech; insistence on from between 1 ½ to 2 ½ hours. There are two main scoring sameness and inflexibility with routines; excessively intense or algorithms: the Diagnostic Algorithm (DA) which focuses on focused interests that are highly restricted and fixated; and developmental issues, and the Current Behaviour Algorithm hyper- or hypo-reactivity to or unusual interest in sensation). (CB) which focusses on behaviour occurring during recent The deficits must be longstanding, with onset in the early months. The DA estimates severity and likelihood of meeting developmental period; they must cause clinically significant diagnostic criteria for ASD (ICD-10 and DSM-IV), while the CB functional impairment in multiple contexts; and must be estimates functioning in multiple areas and can inform differentiated from other developmental disorders (APA, treatment planning. 2013). In the ADI-R Manual the authors provide statistical Establishing a diagnosis of autism requires data that demonstrates good internal reliability for all domains knowledge about current and past behaviour and an (social .95; restricted and repetitive behaviours .69; verbal .85; understanding of the individual’s developmental trajectory. The and communication .84) (Lord et al., 1994), and high test- two primary methods for collecting this information include retest reliability (.93 - .97). Specificity and sensitivity are both self- and other-reports, and direct observation. What follows is high (over 90%) for older children (Lord, Storoschuk, Rutter, & a summary of the most commonly used tools, starting with the Pickles, 1993) but are less adequate for younger children (Kim, gold standard measures: Autism Diagnostic Interview–Revised Thurm, Shumway, & Lord, 2013). More recently, revised (ADI-R; self/other report; Rutter, Le Couteur, & Lord, 2008) and algorithms have been developed (Kim et al., 2013; Kim & Lord, the Autism Diagnostic Observation Schedule, Second Edition 2012) that have improved diagnostic validity for toddlers and (ADOS-2; direct observation; Lord et al., 2012a; Lord, Luyster, young preschoolers from 12 to 47 months. Also, both research Gotham, & Guthrie, 2012b), followed by the Social and clinical cut-offs are now available for this age group, along Responsiveness Scale (SRS-2; Constantino & Gruber, 2012), The with three ranges of concern (little-to-no; mild-to-moderate; Childhood Autism Rating Scale (CARS-2; Schopler, Van moderate-to-severe), which reflect severity of symptoms Bourgondien, Wellman & Love, 2010), and the Autism (Kim, et al., 2013). Asperger Diagnostic Scale (RAADS-R; Ritvo, Ritvo, Guthrie, Yuweiler, Ritvo, & Weisbende, 2008; Ritvo et al., 2011). The ADI-R manual (60 pages) is clearly presented and easy to follow. After an introductory chapter, the manual The Autism Diagnostic Interview–Revised discusses the basic concepts of ADI-R interviewing (chapter 2), the administration protocol and coding instructions (chapter 3), The ADI-R is a semi-structured, standardised clinician the diagnostic algorithms and interpretation (chapter 4). The administered interview, which is conducted with the client’s final chapter provides information about the development of parent/carer and is suitable for all clients with a minimum the interview and the psychometric research. mental age of 2 years. The 93 items are divided into eight main sections: (1) background about the client’s family, The record form is a substantial size (87 pages) education, diagnoses and medications; (2) the client’s because it has one item per page, and each item has an behaviour and the current concerns of the interviewee; (3) explanation of what it is measuring, and verbal prompts are early development and key developmental milestones; (4) provided, as well as the scoring criteria. Approximately 50% of language acquisition; (5) language and communication each page consists of white space (for writing notes), which functioning; (6) social development and play; (7) interests and helps with visual clarity. behaviours; (8) behaviours of clinical importance (gait, Autism Diagnostic Observation Scale

3 Corresponding author: [email protected] The ADOS-2 (Lord et al., 2012a; Lord et al., 2012b) is a semi-structured, standardised, and interactive assessment of communication, social interaction and behaviour. It consists of

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five modules. The Toddler Module (12-30 months) and Module ½ - 4 ½); school age (4 to 18); adult (19+). There is also a self- 1 (31 months and older) are used with children who have no report form for adults aged 19+. speech at all or who are able to use simple phrases. Module 2 is used with children of any age who are not verbally fluent, but The SRS-2 can be completed in 15-20 minutes. Items can use phrase speech, and with children younger than 3 years are rated on a 4 point scale (1 not true, to 4 almost always true) who are verbally fluent. For older individuals who are verbally and raw scores for each of the domains are converted to T- fluent, Modules 3 (children and adolescents up to age 16) and scores for interpretation. 4 (older adolescents and adults) are used. The SRS-2 is a dimensional tool and as such measures For all modules the assessment is conducted by the the severity of impaired social functioning (within normal examiner engaging the client in several social interaction limits, mild, moderate or severe). It is an appropriate tool for activities, and coding their responses using a 4-point scale (0 = screening, for assisting with clinical assessment and diagnosis, no evidence of abnormality for the specified behaviour; 1 = and for research. behaviour is mildly abnormal or slightly unusual; 2 = the behaviour is definitely abnormal; or, 3= the behaviour is markedly abnormal). The record forms are colour-coded for each age Some examples of the types of activities in Module 3 include group and all forms have an ‘autoscore’ format, whereby the engaging with the client in structured (constructing an object) responses for each item are simultaneously transferred to the and unstructured (use of different toys/objects) tasks, and joint appropriate domain as they are endorsed, thus making scoring interactive play (having the client tell a story from sequential very efficient. The front page of the record form serves as a pictures and from cartoons; asking the client specific questions profile sheet that can be completed by the clinician and used about relationships and friendships). to facilitate feedback. The manual (112 pages) is easy to read and well-laid out. Part I has 3 chapters (Introduction, In a review of the ADOS-2, McCrimmon (2014), Administration and Scoring [includes a completed example], reported that Cronbach’s alpha values were consistently high Interpretation [includes 8 case examples]), and Part II discusses for the Social Affect domain (communication, reciprocal social test development, standardisation, and psychometrics. interaction; >.85) and moderate for the Restrictive and Repetitive Behaviour domain (.47 - .66), indicating acceptable Childhood Autism Rating Scale, Second Edition internal consistency. Test-retest reliability for modules 1 to 3 was adequate (.68-.92), as was the Toddler module (.68 - .88). The CARS-2 (Schopler, et al., 2010) is a clinician- Inter-rater reliability for the coding of items was high (> 70%), administered rating scale which assesses the frequency, agreement around diagnosis was even higher (92% – 98% for intensity, peculiarity and duration of behaviours characteristic Modules 1 to 3; 87% - 97% for the Toddler Module) of ASD. It is suitable for individuals six years and older with an (McCrimmon, 2014). Content, construct and predictive validity IQ of 80+. There are two versions; the standard version (CARS2- were all acceptable. Recent revisions to the algorithm for ST) which can be completed during a clinical session based on Module 4 showed good sensitivity (89.6%) and adequate information provided by a parent or carer, or from direct specificity (72.2%) and the authors suggest using a cut-off observation; and the high functioning version (CARS2-HF) score of 10 to increase specificity (91%), but acknowledge that which requires both information from someone who can a potential loss of sensitivity occurs (71-79%) when comparing describe the person’s behaviour in multiple settings, and a ASD and non-ASD individuals (Hus & Lord, 2014). direct observation by the clinician. There is also a parent/carer form for obtaining qualitative information about the individual’s The ADOS-2 Manual has two parts. Part I (443 pages) behaviour. It is not scored and is used as a source of consists of detailed information about administration, coding, supplemental information. and interpretation procedures for the five modules. Each module is coloured coded to match the record forms for each The two forms each have 15 items (e.g., relating to module. Part II (360 pages) of the manual focuses on the use people; emotional response; verbal and non-verbal of the Training Video Program (now available in DVD format). communication; object use) that are rated on a 1 (no difficulty; Part II also includes the descriptions and scored record forms age-appropriate) to 4 (severely abnormal response) scale. Item for 6 of the 10 cases that are included in the training program. scores are summed to obtain a total raw score (range = 15 – 60) with higher scores reflecting a greater number of autism- Social Responsiveness Scale, Second Edition related behaviours. Cut-off scores are used to inform categories of severity (“likely nonautistic”; “mild-to-moderate The SRS-2 (Constantino & Gruber, 2012) is measure of level of behaviours related to autism”; “severe level of social functioning consisting of 65 items across five domains: behaviours related to autism”). T-scores enable comparison of Social Awareness (the ability to notice social cues; eight items); the client’s behaviours with a normative group of individuals Social Cognition (the ability to interpret social cues; 12 items); with ASD. Social Communication (ability to engage in reciprocal social behaviour; 22 items); Social Motivation (extent of engagement; Both forms of the CARS-2 have good reliability 11 items); and Restricted Interests and Repetitive Behaviour (Cronbach’s alpha of .93 and .96) and the HF version also has (stereotypical behaviours and pattern of interests; 12 items). good inter-rater reliability (.95) (Vaughan, 2011). Adequate The measure can be completed by a parent, carer or teacher concurrent validity was demonstrated by correlating the CARS2 and there is a different form for each age group: preschool (2

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total scores with the ADOS (ST: r=.79; HF: r=.77) and the Autism those discussed above, a comprehensive assessment of ASD Behavior Checklist (ST: r = .67) (Vaughan, 2011). should also include assessment of other key areas of functioning including, intellectual and academic abilities, The manual (109 pages) provides clear instructions adaptive behaviour and language skills. for administration, scoring and interpretation. The worked examples of both the ST and HF forms are useful guides. The References five-page record forms are coloured coded (blue for ST, green for HF), clearly laid out, easy to follow with concise instructions, American Psychiatric Association. (2013). Diagnostic and statistical th and each question has adequate space for the clinician to write manual of mental disorders (5 ed.). Arlington: American Psychiatric Association. notes. Item raw scores are transferred to the front page, Constantino, J. N., & Gruber, C. P. (2012). Social Responsiveness Scale (2nd summed, and then T-scores are calculated using the ed.; SRS-2). Torrance: Western Psychological Services. conversion table provided. A rating scale for severity, based on Huss, V., & Lord, C. (2014). The Autism Diagnostic Observation Schedule, the total raw score is also provided. Module 4: Revised algorithm and standardized severity scores. Journal of Autism and Developmental Disorders, 44, 1996-2012. The Ritvo Autism Asperger Diagnostic Scale-Revised Kim, S. H., & Lord, C. (2012). New autism diagnostic interview revised algorithms for toddlers and young preschoolers from 12 to 47 months of age. Journal of Autism and Developmental Disorders, The RAADS-R (Ritvo et al., 2008; Ritvo et al., 2011) has 42, 82–93. been designed as a screening tool for use with adults who Kim, S. H., Thurm, A., Shumway, S., & Lord, C. (2013). Multisite study of have average or above average intelligence. It consists of 80 new Autism Diagnostic Interview-Revised (ADI-R) algorithms for items, in four domains (1) Social Relatedness (23 items); (2) toddlers and young preschoolers. Journal of Autism and Circumscribed Interests (28 items); (3) Sensory Motor (18 Developmental Disorders, 43, 1527–1538. doi: 10.1007/s10803- items); and (4) Social Anxiety (11 items). Sixty-four of the items 012-1696-4. describe specific symptoms of ASD and are answered on a 0 Lord, C., Storoschuk, S., Rutter., & Pickles, A. (1993). Using the ADI-R to diagnose autism in preschool children. Infant Mental Health, 14, (never true) to 3 (true now and when I was young) scale. The 234-252. remaining 16 items reflect non-symptomatic behaviours and Lord, C., Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, are reverse scored (0 true now and when I was young to 3 never S. (2012a.) Autism Diagnostic Observation Schedule (2nd ed.; true). A total score is obtained by summing the items, and a ADOS-2). Part I: Modules 1-4. Torrance: Western Psychological score of 65+ suggests a diagnosis of ASD. However, scores of Services. Lord, C., Luyster, R. J., Gotham, K., & Guthrie, W. (2012b). Autism <65 do not exclude the possibility of ASD and the authors nd emphasise favouring clinical judgement over RAAD-R scores, Diagnostic Observation Schedule (2 ed.; ADOS-2). Part II: Toddler module. Torrance: Western Psychological Services. for low scores, when ASD symptoms are present. Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism Diagnostic Interview- The authors report good internal consistency (α .87 - .95), high Revised: A revised version of a diagnostic interview for sensitivity (97%), specificity (100%) and test-re-test reliability caregivers of individuals with possible pervasive developmental over 10 – 15 months (r=.98) (Ritvo et al., 2011). Thus the disorders. Journal of Autism and Developmental Disorders, 24, RAADS-R is a psychometrically sound tool that can accurately 659-685. discriminate between those with a DSM-IV-TR diagnosis of ASD McCrimmon, A. (2014). Test review. Journal of Psychoeducational Assessment, 32, 88-92. and those without. Ritvo, R., Ritvo, E., Guthrie, D., Yuweiler, A., Ritvo, M & Weisbender, L. (2008). A scale to assist the diagnosis of autism and Asperger’s The RAADS-R is a self-report measure which is easy disorder in adults (RAADS): A pilot study. Journal of Autism and to administer and score. The authors provide a copy of the Developmental Disorders, 38, 213-223. scale and the scoring guidelines in their paper (Ritvo et al., Ritvo, R. A., Ritvo, E. R., Guthrie, D., Ritvo, M. J., Hufnagel, D. H., McMahon, 2011). W., Tonge, B., … Eloff, J. (2011). The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): A scale to assist the diagnosis of autism spectrum disorder in adults: An Conclusion international validation study. Journal of Autism and Developmental Disorders, 41, 1076-1089. doi: 10.1007/s10803- The assessment of ASD is a complex process which 010-1133-5. involves identifying deficits in reciprocal social communication Rutter, M., Le Couteur, A., & Lord , C. (2008). Autism Diagnostic Interview and social interaction, and exploring patterns of behaviour, (ADI-R). Los Angeles: Western Psychological Services. interests and activities, and evaluating the extent to which they Schopler, E., Van Bourgondien, M. E., Wellman, G. J., & Love, S. R. (2010). nd are excessively restricted and repetitive. The process of Childhood Autism Rating Scale (2 ed.). Los Angeles: Western Psychological Services. diagnosis relies heavily on drawing together information from Vaughan, C. A., (2011). Test review. Journal of Psychoeducational multiple sources including the DSM-5 criteria, reports from Assessment, 29, 489-493. parents and teachers, and self-reports, and observational measures. In addition to using specific ASD measures such as

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Conducting Developmental and Cognitive Assessments with Young Children with Autism Spectrum Disorders

Jessica Paynter, PhD and Hannah Fothergill, BSc (Hon)

AEIOU Foundation, Moorooka, Queensland, Australia

Abstract

Australian Good Practice guidelines recommend standardised assessments for children with Autism Spectrum Disorder (ASD) to inform planning and evaluation of treatment. Psychologists may complete developmental/cognitive assessments to identify children’s developmental level, inform treatment planning, eligibility for support, or to evaluate progress. Assessing children with ASD can be more challenging than assessing children without ASD due to social communication difficulties, comorbidities, and behaviours associated with ASD. The present article overviews challenges faced in assessing children with ASD as well as considerations when conducting assessments to assist psychologists to complete a valid assessment of a young child with ASD.

4Australian Good Practice Guidelines for Early behaviour (e.g., non-compliance and/or difficulties with Intervention (Prior & Roberts, 2012) recommend the need for emotional regulation) than other groups, such as children who standardised assessments for children with ASD, not only for are typically developing, or who have other disabilities such as diagnosis, but also for planning of interventions and evaluation Down syndrome (e.g., Eisenhower, Baker, & Blacher, 2005). Co- of programs. The focus of this article is on the challenges and morbidities are also common including intellectual impairment considerations in conducting an assessment for these latter (see Elsabbagh, et al., 2012, for estimates in epidemiological two purposes, with particular attention given to studies), mood disorders (e.g., Simonoff et al., 2008), and developmental/cognitive assessment of children diagnosed medical conditions such as epilepsy (e.g., Mannion & Leader, with ASD in the pre-school years. Diagnostic assessments are 2014). Challenges with executive functioning (i.e. suppressing beyond the scope of this article and the reader is referred to a responses, difficulties with keeping/using information and recent review (Falkmer, Anderson, Falkmer, & Horlin, 2013) and changing strategies/shifting set), have also been well- book chapter (Reisinger, Steiman, Ferencz, & Sattler, 2014) for documented in individuals with ASD (Geurts, Vries, & Bergh, further information on ASD specific assessments. Standardised 2014). These common features and co-morbidities can raise developmental or cognitive assessment by psychologists may challenges around conducting a valid assessment. be indicated for young children with ASD to assess for intellectual impairments and/or identify developmental delays, Typically-developing children are often keen to please to identify strengths and needs to inform treatment, to assess assessors, whereas children with ASD may not appear this way, for eligibility to programs and funding, monitor progress and and difficulties with understanding what is being asked of development within intervention programs, identify language them or challenges in social understanding, may lead to or behaviour problems and possible underlying explanations, children with ASD being more easily frustrated and harder to and/or to assist families and professionals to create realistic engage (Akshoomoff, 2006). In addition, difficulties with expectations for a child’s development and skill building communication may impair children’s ability to understand task (Akshoomoff, 2006; Brassard & Boehm, 2007). requirements. In line with this, previous research (e.g., Dawson, Soulieres, Gernsbacher, & Mottron, 2007; Grondhuis & Challenges Assessing Children with Autism Spectrum Mulick, 2013) has found children with ASD tend to perform Disorder better on non-verbal assessments (e.g., Leiter International Performance Scale-Revised; Roid & Miller, 1997) than more Autism Spectrum Disorder (ASD) is characterised by verbally-based assessments of intellectual functioning (e.g., impairments in social communication and social interaction Wechsler Intelligence Scales for Children – Third Edition [WISC- skills, and restricted, repetitive behaviours, interests, or III]: Wechsler, 1991; Stanford-Binet – Fifth Edition [SB-5]; Roid, activities (American Psychiatric Association, 2013). Hypo- or 2003). hyper-sensitivity to sensory input, such as sensitivity to sound, is common (Ben-Sasson., et al., 2009) and acknowledged in the Young children with ASD also show difficulties with diagnostic criteria (American Psychiatric Association, 2013). imitation relative to their typically-developing peers (e.g., Children with ASD are more vulnerable to challenging Rogers, Hepburn, Stackhouse, & Wehner, 2003) and proto- declarative pointing, that is pointing for purposes other than requesting (Leekam, López, & Moore, 2000; Sigman, Mundy, Sherman, & Ungerer, 1986). These characteristics may limit a 4 Corresponding author: [email protected] child with ASD’s ability to understand or respond to items in some assessments, such as imitating block constructions in a

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particular way (e.g., in the WISC-IV; Wechsler, 2003; and Mullen Tempier, & Rutter, 2014). However, given the challenges Scales of Early Learning [MSEL]; Mullen, 1995), or pointing to above, careful consideration of the most appropriate matching pictures (e.g., MSEL), or a picture of a named item assessment, advance preparation, and work in session to build (e.g., Peabody Picture Vocabulary Test; Dunn & Dunn, 1997). and maintain attention and engagement is required to give the Challenging behaviour may also make conducting an best opportunity for a valid assessment. assessment more difficult, and higher rates of challenging behaviour and lower engagement have been linked to poorer Choosing an Appropriate Developmental or Cognitive test performance in children with ASD (Akshoomoff, 2006). Assessment Finally, difficulties with executive functioning (e.g., difficulties shifting set) as well as restricted thinking (diagnostic criteria) Factors to consider when choosing an appropriate may present challenges in assessments where the same general assessment (e.g., cognition, development level, materials are to be used in different ways (e.g., stacking blocks educational skills), in addition to the referral question, include vs. imitating block constructions in the MSEL). the child’s chronological and mental age, verbal ability, and test-taking skills (e.g., pointing). Test characteristics to consider Standardised Cognitive and Developmental Assessments may include whether the age range starts at infancy or tasks are understandable to preschool children with a mental age of In clinical practice, given the above challenges, it is less than two years, whether instructions for non-verbal tests perhaps not surprising that one often encounters queries may be demonstrated by the examiner, flexibility of item around the appropriateness of using standardised administration, and whether lengthy discontinuation assessments, particularly with young children with ASD. procedures are avoided. A summary of common Indeed, some have questioned the validity of standardised intellectual/developmental assessments and the factors to assessments as a whole with young children and advocated for consider as an example, adapted from Brassard and Boehm alternative assessment approaches (e.g, Neisworth & Bagnato, (2007), may be seen in Table 1. Intellectual and developmental 2004). Evidence for the validity of assessments for young assessments of children with ASD may be required for children with ASD, using intellectual assessment as an example, to ascertain whether children fulfill criteria for school example, may be seen in findings that intellectual quotients placement, for differential diagnosis, or to provide information (IQs) of children with ASD are stable from the preschool years on developmental level that may inform functional behavioural (e.g., Dietz, Swinkels, Buitelaar, Daalen, & Engeland, 2007; Lord assessment and setting of developmentally-appropriate & Schopler, 1989) and that IQs in the average range in children behavioural expectations. with ASD are stable into adulthood (Howlin, Savage, Moss,

Table 1 Clinical Characteristics of Commonly used Intellectual/Developmental Assessments a Clinical Characteristic Materials Age range Tasks Instructions for Flexibility of Lengthy include toys starts at understandable to nonverbal tests item discontinuation infancy preschool children may be administration procedures with a mental age pantomimed (verbal, avoided Test of less than 2 yrs nonverbal, difficult, easy) Bayley Scales of Infant ! ! ! " " ! Development – Third Edition (BSID-3) Griffiths Mental ! ! ! ! ! ! Development Scales (GMDS) Leiter International " " " ! " " Performance Scale –Rb Merrill-Palmer-Revised Scales ! ! ! ! ! ! of Development (MP) Mullen Scales of Early ! ! ! " ! ! Learning (MSEL) Psychoeducational ! ! ! " ! "c Profile-3 (PEP-3)

Stanford-Binet Intelligence ! " " " " " Scales- Fifth Edition (SB-5) Wechsler Preschool and " " " " " " Primary Scale of Intelligence- Fourth Edition (WPPSI-4) aLeiter International Performance Scale-Revised (Roid & Miller, 1997); Psychoeducational Profile- Third Edition (Schopler, Lansing, Reichler, & Marcus, 2005); and WPPSI (Wechsler, 2012) added to information from Brassard and Boehm (2007). bNote a new edition has recently been released (2013) and this information may not apply to the new edition; cNo discontinuation procedure, must administer all items.

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A child’s chronological age may help in narrowing the whether assessment should be deferred until a child has been choice of assessments available. However, many children with taught the required skills to complete the specific test. ASD function at a level significantly below their chronological age, and choosing a test that may be sensitive to their skills Another consideration when choosing an may be required where children have a known or suspected assessment is whether a brief assessment or a full battery of developmental delay or intellectual impairment. Finding a test assessments is required. This may depend on the reason for which includes both chronological and mental age can be a referral, the child’s behaviour, and attention span. For example, challenge, and clinicians may consider whether a test that a clinician may choose to administer the MSEL over the Bayley provides age equivalents may be suitable where a child’s Scales of Infant Development (BSID) which can be a longer test mental age is estimated to be significantly lower than their to administer, where behaviour or attention difficulties are chronological age. Although, age-equivalents require careful present. In addition, where the assessments are used for interpretation, they may be useful in obtaining an estimate of a evaluation purposes, and may need to be repeated over time child’s current ability level and may prove useful for measuring to identify changes or developments, the age range across the change over six-month intervals following early intervention study or intervention/monitoring period may need to be (e.g., using the Mullen Scales as suggested by Akshoomoff, considered. For example, where a child is to be assessed at 2006) five and eight years of age, the Stanford-Binet may be used at both time points, whereas using Wechsler scales this age Initial screening of a child’s verbal ability, range may necessitate using the WPPSI and then the WISC. understanding of basic concepts, and processing speed (e.g., to consider timed/non-timed tests) is recommended to Preparation for Assessment inform test selection. Previous research has shown for example, that poorer verbal ability is linked to poorer outcomes It is recommended that the test location and time is on more verbally-based tests such as the SB-5 (Lennen, Lamb, chosen to fit with the child and family’s needs. For example, Dunagan, & Hall, 2010). If an assessment contains verbal some children may respond better in their usual environment instructions, and a child does not possess the necessary level and assessment at their school or home may be more of receptive skills to understand the requirements, it will be appropriate than a clinic setting. Young children in particular unclear whether the child did not correctly respond due to may respond better when a caregiver or parent is present. The their ability or whether they did not understand the assessment time should consider the child’s/school’s usual requirement of the task. For children with limited or no verbal routines such as morning tea, toileting, and nap/sleep times ability, the use of a non-verbal assessment may yield more and avoid these to maximize motivation (Akshoomoff, 2006). information about the extent of a child’s abilities depending on In our experience, it can be helpful to give families a letter to the referral question. Additionally, screening of a child’s basic confirm their assessment day/time/location and anything they skills (e.g., pointing) and readiness for assessment (e.g., ability need to bring (e.g., snack, reinforcers, communication devices to sit and attend) is recommended. These skills may limit etc.), as well as short text message on a company telephone which assessments may be conducted with a child, and number to confirm the day before.

Table 2 Assessment Preparation Checklist Prior to the Assessment • Avoid mealtimes and naptimes in setting assessment time/s • Minimise any environmental distractions for the time/s of the assessment (e.g., lawn maintenance) • Prepare visual supports for assessment where required • Set a location, time, and date in session or telephone • Send/give a letter to confirm the assessment in advance, include social narrative if using • Call or text message to confirm 24 hours in advance with parents/teachers as applicable, remind to bring/send any applicable items (e.g., reinforcers) • Check with caregivers for any recent illness or injury that may affect the assessment

On the Day • Remove any potentially hazardous materials or items (e.g., small toys) from the assessment room and any potential distractions • Make sure all materials are in the kit and that you have all relevant manuals, picture books and other materials (e.g., toys) that will be needed during the assessment • Put a visual cue for the assessment on child’s visual schedule (if using) • Collect any items for child’s assessment that caregivers have arranged (e.g., reinforcers, drinks, snacks, and/or communication device/s) • Complete front page of record form e.g., date, date of birth, and arrange stationery (e.g., pencils, erasers, spare paper for notes etc) • Find basal item (if applicable) and arrange test materials in room and prepare any materials in advance (e.g., for the first item) • If using, arrange reinforcer box, finish box and any visuals (e.g. first/then, schedules) to be used to facilitate the process • Consider furniture and seating placement and arrange as necessary (e.g., table against wall) • Put sign on door to “not disturb” if testing in a clinic or school • Set up video equipment if using • Check child has gone to the toilet recently/has a clean diaper before transitioning to assessment room

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Prior to the assessment being conducted, completed items in a “finish box” to show they are completed; parents/caregivers should be informed of the purpose of the preparing the test materials in advance to allow faster assessment, costs, and when to expect results. Clinicians transition between items to keep the assessment more should also gather information about the child’s test-taking engaging; and alternating desirable/less desirable tasks where skills (as discussed above), challenging behaviours that may flexible administration is allowable in the assessment (e.g., impact on the assessment (e.g., non-compliance, biting of MSEL, PEP-3). materials or people, anxiety), allergies (e.g., latex), sensory sensitivities (e.g., loud noises; air-conditioning), response to It is important to be aware of what can and cannot be changes in routine or environment, use of visuals and scored (i.e. allowable modifications) and to ask parents (if communication devices, and preferred activities and interests. present) whether a child can complete tasks they may refuse This information and preparation supports the clinician to or not demonstrate. Often, as also observed by Akshoomoff obtain the most valid and safe assessment. For example, it may (2006), parents will report children cannot demonstrate a skill be decided in advance to remove or reduce the use of small under the constraints of the task (e.g., “Point to the red crayon” items that may present a choking hazard for a child who tends parents will say can respond to “Give me”). In this case it is to mouth or bite items. Where allergies are present, caution recommended to administer the item as intended for scoring around these materials and items in the test location may be purposes but to note, or test, these adaptations after the needed (e.g., use of gloves, no nuts for lunches, etc.). Some standard administration (but score as 0 or failing), for children may benefit from a social narrative (for more informational purposes. The specific strategies and adaptations information see Wong et al., 2014) to explain and understand used to gain/maintain attention and their success should also the social situation of the test to reduce anxiety and be recorded and discussed in the behavioural observations predictability for a child who prefers routine and may have section of the report or during feedback as applicable. We have difficulty with the unfamiliar test situation. Knowledge of a also found, like Akshomoff (2006), that it can be useful to child’s preferred activities and interests can be used to select discuss with parents, whether they felt the skills their child appropriate materials for the breaks and reinforcers to maintain showed were representative of their usual functioning, children’s interest and attention (for more information on particularly if difficulties with gaining/maintaining attention and reinforcement and ASD see Wong, et al., 2014). Common engagement are observed. The Communication and Symbolic reinforcers in our practice include favourite foods or snack, Behavior Scales Developmental Profile (Wetherby & Prizant, “high fives”, tickles, puzzle play, cause and effect toys, books 2002) provides an excellent example for such a discussion that (e.g., “Thomas the Tank Engine”), and short periods of non- includes a parent questionnaire for completion at the end of destructive self-stimulatory behaviour (e.g., lining up objects). the assessment that asks whether the child’s presentation The use of a visual work schedule of tasks may also be of (e.g., play, communication, alertness) was typical or assistance to some children with ASD, and ideally would need better/worse than usual. preparing in advance using photographs or pictures of test items or activities (for further discussion see Klinger, O'Kelley, Conclusion and Recommended Reading & Museey, 2009). A checklist to assist with preparation on the day, based on our clinical experience and the above To ensure the best opportunity for a valid recommendations, can be seen in Table 2. assessment, consideration of an individual child with ASD’s unique strengths and needs is important to facilitate Strategies for Maintaining Engagement during the assessment of their cognitive or developmental skills. Assessment Considerations may include features of the diagnosis such as communication impairments, and associated features such as Maintaining children’s engagement and reducing off- challenging behaviour. This information can assist in task and challenging behaviours may be particularly important assessment selection, advance preparation, and selection of for assessing children with ASD. Thus, without affecting strategies to maintain engagement during the assessment. standardised procedures, it is important to enhance Valid assessment is important for treatment planning, engagement with children with ASD as much as possible, as evaluation of progress, and assessing eligibility for additional motivation and attention in children with ASD has been shown supports or funding. For further information on assessment of to considerably affect test performance and outcome (e.g., children with ASD including psychoeducation for parents Koegel, Koegel, & Smith, 1997). One element of this is around assessment, interpretation, report-writing and planning in advance as discussed above. The second element is feedback which were beyond the scope of this article, please during the assessment, and may include managing challenging see below for a list of recommended reading. behaviour, using reinforcement procedures, administration in short chunks of time; predictable breaks contingent with on- For sharing with parents/caregivers: task performance; allowing parents to attend; and allowing the Braaton, E., & Felopulos, G. (2003). Straight Talk about child to complete the assessment on the floor (Akshoomoff, Psychological Testing for Kids. New York: Guilford. 2006; Koegel, et al., 1997). In addition, it can be helpful to allow children a short period of play (10-15 minutes) to warm up to For clinicians: the examiner and test situation prior to assessment while Matson, J. L. (Ed.). (2008). Clinical Assessment and Intervention making observations (e.g., language sample) during this time; for Autism Spectrum Disorders. Burlington: Elsevier. having children assist in packing up test items (to give them something to do while setting up the next task); placing Goldstein, S., Naglieri, J. A., & Ozonoff, S. (Eds.). (2009). Assessment of Autism Spectrum Disorders. New York: Guilford.

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Brassard, M. R., & Boehm, A. E. (2007). Preschool Assessment: Leekam, S. R., López, B., & Moore, C. (2000). Attention and joint attention Principles and Practices. New York: Guilford in preschool children with autism. Developmental Psychology, 36(2), 261-273. Lichtenberger, E. O., Mather, N., Kaufman, N. L., & Kaufman, A. S. Lennen, D. T., Lamb, G. D., Dunagan, B. J., & Hall, T. A. (2010). Verbal (2004). Essentials of Assessment Report Writing. New Jersey: prowess equals higher IQ: Implications for evaluating autism. Research in Autism Spectrum Disorders, 4(1), 95-101. Wiley. Lord, C., & Schopler, E. (1989). The role of age at assessment, References developmental level, and test in the stability of intelligence scores in young autistic children. Journal of Autism and Developmental Akshoomoff, N. (2006). Use of the Mullen Scales of Early Learning for the Disorders, 19(4), 483-499. doi: 10.1007/bf02212853 assessment of young children with Autism Spectrum Disorders. Mannion, A., & Leader, G. (2014). Epilepsy in autism spectrum disorder. Child Neuropsychology, 12(4), 269 - 277. Research in Autism Spectrum Disorders, 8(4), 354-361. American Psychiatric Association. (2013). Diagnostic and Statistical Mullen, E. M. (1995). Mullen Scales of Early Learning (AGS ed.). Circle Pines, Manual of Mental Disorders (5th ed.). Washington, DC: Author. MN: American Guidance Service Inc. Ben-Sasson, A., Hen, L., Fluss, R., Cermak, S., Engel-Yeger, B., & Gal, E. Neisworth, J. T., & Bagnato, S. J. (2004). The mismeasure of young (2009). A meta-analysis of sensory modulation symptoms in children: The authentic assessment alternative. Infants & Young individuals with Autism Spectrum Disorders. Journal of Autism and Children, 17(3), 198-212. Developmental Disorders, 39(1), 1-11. Prior, M., & Roberts, J. (2012). Early Intervention for Children with Autism Brassard, M. R., & Boehm, A. E. (2007). Preschool Assessment: Principles Spectrum Disorders: ‘Guidelines for Good Practice’. Retrieved and Practices. New York: Guilford. from Dawson, M., Soulieres, I., Gernsbacher, M. R., & Mottron, L. (2007). The http://www.fahcsia.gov.au/sites/default/files/documents/11_201 level and nature of autistic intelligence. Psychological Science, 18, 2/early_intervention_practice_guidlines.pdf 657-662. Reisinger, L., Steiman, M., Ferencz, S., & Sattler, J. M. (2014). Autism Dietz, C., Swinkels, S. N., Buitelaar, J., Daalen, E., & Engeland, H. (2007). Spectrum Disorder. In J. M. Sattler (Ed.), Foundations of Behavioral, Stability and change of IQ scores in preschool children diagnosed Social, and Clinical Assessment of Children (6th ed.). San Diego: with autistic spectrum disorder. European Child and Adolescent Jerome M. Sattler, Publisher, Inc. Psychiatry, 16(6), 405-410. Rogers, S. J., Hepburn, S. L., Stackhouse, T., & Wehner, E. (2003). Imitation Dunn, L. M., & Dunn, L. M. (1997). PPVT-III : Peabody Picture Vocabulary performance in toddlers with autism and those with other Test. Form 111A (3rd ed.). Circle Pines, Minn.: American Guidance developmental disorders. Journal of Child Psychology and Service. Psychiatry and Allied Disciplines, 44(5), 763-781. Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children Roid, G. H. (2003). Stanford Binet Intelligence Scales (5th ed.). Itasca, IL: with intellectual disability: syndrome specificity, behaviour Riverside Publishing. problems, and maternal well-being. Journal of Intellectual Roid, G. H., & Miller, L. J. (1997). Leiter International Performance Scale- Disability Research, 49(9), 657-671. doi: 10.1111/j.1365- Revised. Wood Dale, IL: Stoelting Col. 2788.2005.00699.x Schopler, E., Lansing, M. D., Reichler, R. J., & Marcus, L. M. (2005). Elsabbagh, M., Divan, G., Koh, Y.-J., Kim, Y. S., Kauchali, S., Marcín, C., … Psychoeducational Profile (3rd ed.). Austin: Pro-Ed. Fombonne, E. (2012). Global prevalence of autism and other Sigman, M., Mundy, P., Sherman, T., & Ungerer, J. (1986). Social pervasive developmental disorders. Autism Research, 5(3), 160- interactions of autistic, mentally retarded, and normal children 179. with their caregivers. Journal of Child Psychology and Psychiatry, Falkmer, T., Anderson, K., Falkmer, M., & Horlin, C. (2013). Diagnostic 27(5), 647-656. procedures in autism spectrum disorders: a systematic literature Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. review. European Child and Adolescent Psychiatry, 22(6), 329-340. (2008). Psychiatric disorders in children with Autism Spectrum Geurts, H., Vries, M., & Bergh, S. W. M. (2014). Executive functioning Disorders: Prevalence, comorbidity, and associated factors in a theory and autism. In S. Goldstein & J. A. Naglieri (Eds.), Handbook population-derived sample. Journal of the American Academy of of Executive Functioning (pp. 121-141): New York: Springer Child and Adolescent Psychiatry, 47(8), 921-929. Grondhuis, S. N., & Mulick, J. A. (2013). Comparison of the Leiter Wechsler, D. (1991). Wechsler Intelligence Scale for Children-Third Edition. International Performance Scale—Revised and the Stanford-Binet San Antonio, TX: Psychological Corporation. Intelligence Scales, 5th Edition, in children with Autism Spectrum Wechsler, D. (2003). Wechsler Intelligence Scale for Children- Fourth Disorders. American Journal on Intellectual and Developmental Edition. San Antonia, TX: Psychological Corporation. Disabilities, 118(1), 44-54. Wechsler, D. (2012). Wechsler Preschool and Primary Scale of Intelligence- Howlin, P., Savage, S., Moss, P., Tempier, A., & Rutter, M. (2014). Cognitive Fourth Edition. San Antonio: Pearson. and language skills in adults with autism: a 40-year follow-up. Wetherby, A., & Prizant, B. M. (2002). Communication and Symbolic Journal of Child Psychology and Psychiatry, 55(1), 49-58. doi: Behavior Scales Developmental Profile. Baltimore: Brookes. 10.1111/jcpp.12115 Wong, C., Odom, S. L., Hume, K., Cox, A. W., Fettig, A., Kucharczyk, S., et Klinger, L. G., O'Kelley, S. E., & Museey, J. L. (2009). Assessment of al. (Eds.). (2014). Evidence-Based Practices for Children, Youth, and intellectual functioning in autism spectrum disorders. In G. Young Adults With Autism Spectrum Disorder. Chapel Hill: The Goldstein, J. A. Naglieri & S. Ozonoff (Eds.), Assessment of Autism University of North Carolina: Frank Porter Graham Child Spectrum Disorders (pp. 209-252). New York: Guilford. Development Institute, Autism Evidence-Based Practice Review Koegel, L. K., Koegel, R. L., & Smith, A. (1997). Variables related to Group. differences in standardized test outcomes for children with autism. Journal of Autism and Developmental Disorders, 27(3), 233- 243.

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Austism and Education in Australia

Jacqueline M.A. Roberts, PhD

Autism Centre of Excellence, Griffith University, Australia

Abstract

The proportion of school-aged children diagnosed with autism* in Australia is increasing. Most attend a regular school and most experience some restrictions and difficulties. There is a range of issues for these students including, poor academic performance relative to their cognitive ability, bullying, high rates of co-morbid mental health problems, suspension and exclusion and poor post-school outcomes. Key characteristics of autism, particularly social communication, make school challenging for students with autism and in turn make students with autism challenging for schools. However schools can and do succeed in including students with autism. Good practice in autism education involves: individualised programs based on strengths, managing the environment to facilitate participation and engagement, curriculum adaptions and adjustments, focus on managing the hidden curriculum, a collaborative, multidisciplinary team approach, provision of structure and routine, evidence supported strategies, data collection and review. Schools in Australia are largely failing these students. Clear focus and direction and resources at a systems level are required to improve educational outcomes for this population.

Increasing numbers of children in Australia are being What are the issues? diagnosed with autism (ASD)5. Debate continues about the best educational placement for these children and states vary Poor academic performance in the types of educational placements available. For many Students with autism under-perform academically professionals, inclusion in mainstream education is the goal for relative to their level of cognitive ability (Ashburner, Ziviani & most, if not all children with autism. According to the Rodger, 2010). This Australian study found that 54% of Australian Bureau of Statistics in Australia the majority (95%) of students with autism and without intellectual disability, were children and young people with autism in Australia are enrolled rated by their teachers as underperforming relative to 8% in a school. Of this majority, 56% attend a mainstream school typically developing peers, despite supports provided for and 44% attend a special school or a special class in a students with autism in classrooms. Teacher judgment of mainstream school. Of those enrolled in school some (6%) academic performance has been shown to be highly accurate were reported to be unable to attend school at all because of with high correlations with standardised tests of academic their disability, and of those that did attend school 86% performance (Gresham & Kendell, 1987). Academic reported ‘having difficulty’ at school which usually involved expectations of students with autism are likely to be high as a difficulties fitting in socially, communication, and learning. Only result of their, often exceptional, cognitive abilities. The a tiny percentage of children with autism attended school and majority of students with autism in mainstream schools test in did not experience any educational restrictions (ABS, 2012). the average IQ range or above, yet have cognitive characteristics (e.g., weak central coherence, planning difficulties) which make academic success difficult. In addition, despite fluent expressive language and extensive vocabularies, social communication difficulties result in social isolation, anxiety and depression (Brewin, Renwick & Schormans, 2008) and poor academic outcomes.

Bullying We know students with autism are more likely to be the targets of bullying in special education settings (van Roekel, Scholte & Didden, 2010). In mainstream settings in the US, up to 75% of students with autism experienced bullying at school, four times more than the non-disabled population

(Little, 2001). Bullying victimisation is associated with negative outcomes. Children who experience high levels of bullying *The term autism is used interchangeably with autism spectrum (once or more per week) tend to exhibit higher levels of disorder. anxiety, hyperactivity, self-injurious behaviours, stereotypic 5 An Australian study (MacDermott, Williams, Ridley, Glasson, & Wray, behaviours, and elevated emotional sensitivity (Cappadocia, 2007) indicates a national prevalence rate of 1 in 160 for children aged 6 Weiss & Pepler, 2012). Victimisation is associated with – 12 years. More than 2% of the children currently enrolled in academic difficulties and school avoidance, as well as Queensland schools have a verified diagnosis of autism. internalizing mental health problems such as anxiety, Corresponding author: [email protected] depression, and suicidal ideation (Schroeder, 2014).

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Depression, anxiety and other co-morbid mental health 60% in secondary schools) related to pupils with social and conditions emotional needs (SEN) and that pupils with autistic behaviour Problems include sleep disturbance and irritability, made up a significant proportion of this group. Exclusion was a pica and eating disorders, and ADHD (Williams & Roberts, in greater problem for the most cognitively able children with press). Students with autism in schools are more likely than the 29% of 'very high functioning' children experiencing exclusion typical population to have mental health problems including from school. Reasons given for exclusion included teacher mood and anxiety disorders. Long term (6 years post- inability to cope, student inability to cope, lack of diagnosis) follow up data compared mental health outcomes staff/resources/training, and problem behaviours ranging from for 59 cognitively able children with autism with the typical disruption to violence and aggression. population (Kim, Szatmari, Bryson, Streiner & Wilson, 2000). A higher rate of anxiety and depression problems was associated Information about the numbers of students with with autism, which in turn had a significant impact on the autism excluded from school in Australia is scarce. In a small children’s overall adaptation. Students with autism in study of children with autism in NSW schools, 40% failed in mainstream classes were rated by their teachers as having their initial school placement within 12 months and had to poor emotional and behavioural regulation compared to age- change schools, usually from a mainstream class to a disability and gender-matched typically developing students and specific placement (Lilley, 2014). significantly higher rates of behavioural and emotional difficulties [(including attention difficulties, anxiety, Post -school outcomes depression, oppositional and aggressive behaviours When compared to people with other disabilities, (Ashburner et al., 2010)]. Frequent victimisation is one factor people with ASD experience poorer post-school outcomes. related to internalising mental health problems (Zablotsky, The Australian Bureau of Statistics (ABS) Survey of Disability Bradshaw, Anderson & Law, 2013). Ageing and Carers (2012) reported that 81% of people with autism who had finished school had not completed a post- Anxiety is a common problem in people with autism school qualification, well above the rate for both the rest of the and in many this develops into an anxiety disorder such as population with disability and people with no disability. When specific phobia, panic disorder, separation anxiety disorder, compared to people with other disabilities, people with ASD social anxiety disorder, generalised anxiety disorder or experience poorer outcomes in relation to workforce obsessive compulsive disorder. Estimates vary: Muris et al. participation, 34% compared to 54% labour force participation (1998) found that 84% of children with pervasive rate for people with disabilities and 83% for people without developmental disorder met the full criteria of at least one disabilities (ABS, 2012). anxiety disorder while Howlin and Moss (2012) found that almost 30% of children aged 10 to 14 years with autism suffered from social anxiety disorders.

Participation and Quality of Life in relation to school and school experience School is likely to be an unhappy experience for the child with autism and their family (Brewin et al., 2008). Parents may be concerned that their child’s disability was frequently unrecognized, misunderstood and underestimated. They may be concerned about the lack of understanding, education and training of staff in the field of autism, which can result in a lack While failure to complete post-school qualifications of flexibility. Schools may fail to recognise the particular and find employment cannot be attributed to the education interests and skills of their children and place value on activities system alone, school systems should accept some of the such as team sports, which students with autism typically find responsibility for the poor post-school outcomes of students incomprehensible or unrewarding. When students with autism with autism. attend mainstream schools they may spend as much as two thirds of their time withdrawn from the classroom, (Newman, Square pegs in round holes? Why are schools and students 2007) and when they are in mainstream classrooms, teachers with autism incompatible? report they participate less actively than their typical peers. The core characteristics of autism, which are present from Academic participation is a significant factor in predicting an early age and continue for life, present major barriers to participation in post-secondary education (Chiang, Cheung, participation in education for students and significant Hickson, Xiang, & Tsai, 2012). challenges for those teaching them. These characteristics include: School attendance, suspension and exclusion • Difficulty relating to others and poor functional Students with ASD are more likely to be suspended communication, different ways of communicating and from school compared to other disability groups or typical different motivation to communicate (e.g., difficulty in peers (Barnard, Prior & Potter, 2000). A government identifying a topic of interest to others, extensive committee, set up in the UK to investigate the issues for vocabulary, but not appropriate to social context). students with social and emotional needs in schools (House of Commons Education and Skills Committee, 2006), found that the clear majority of permanent exclusions (87% in primary and

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• Obsessive insistence on environmental sameness and because there are few models and procedures to facilitate the powerful interests. These differences and difficulties result successful inclusion of these students, meaning staff are faced in internalised responses (such as self-stimulatory and self with the task of designing programs in the absence of clear injurious behaviours) or externalised responses (such as guidelines and procedural protocols (Simpson, de Boer-Ott, & agression towards others) (American Psychiatric Smith Myles, 2003). Many otherwise skilled and competent Association, 2000). Irregular patterns of processing regular educators report that they consider themselves to be sensory information including hyper- and hypo- sensory less than fully capable of serving the needs of students sensitivities and distortions. diagnosed with autism (Simpson, 1995), and ill equipped to meet their social, learning, and behavioural needs (Marks et al., • Irregular patterns of cognitive and educational strengths 2003). and deficits, including splinter skills and isolated discontinuous abilities (Jordan, 1999), attentional What makes school work for children and young people with differences such as difficulty selectively attending and autism? different ways of learning and remembering (Ricketts, Interventions based on learning (also referred to as Jones, Happé, & Charman, 2013). A characteristic profile of behavioural interventions) are demonstrated to be the most reading performance including strengths in the mechanics effective for children and young people with autism, not solely of reading (i.e. word decoding) and difficulties in reading access to the academic curriculum, but learning based comprehension (Chiang & Lin, 2007) resulting in difficulty interventions to address specific characteristics of autism and following and mastering the school curriculum. improve overall quality of life (Jordan, Jones & Murray, 1998). The heterogeneous nature of autism means no one program, These characteristics are interrelated. For example social support, or service will meet the needs of the autistic communication impairment is a significant predictor of reading population as a whole. Each student with autism has a unique comprehension, which was found to have more impact on constellation of strengths and needs. An individualised literacy than word recognition and oral language deficits program with both academic and hidden6 curriculum (Smith- (Ricketts et al., 2013). Motivation is particularly important for Myles, Trautman, & Schelvan, 2004) goals is essential to meet students with autism and unsurprisingly students with ASD their communication, social and adaptive behaviour needs and perform best when material is relevant to them. Interestingly facilitate participation in school both in and out of the students with autism have the highest in Science Technology classroom. They require social, communication and adaptive Engineering Mathematics (STEM) enrolments of all disability behaviour support to make a successful transition to tertiary groups. education, training or employment (Department of Education & Science, 2006). Some will only require minimal or moderate Students with autism challenge schools. Deficits in theory modifications to the general education curriculum, whereas of mind abilities are a core feature of ASD (Baron-Cohen, Leslie, others may need major adaptations and a functional academic & Frith, 1985) and make it difficult for those with ASD to approach (Ivannone, 2003). understand social cues and monitor feedback from others about how their behaviour is being perceived. This in turn Successful educational programs for students with increases the likelihood of marginalisation and conflict within autism share many, if not all, of the following characteristics: staff and peer relationships. Problem behaviours demonstrated by children with ASD—such as emotional Individualised approach and program outbursts, tantrums, aggression and non-compliance—create Comprehensive identification and assessment of the unique substantial obstacles for school staff (Strain, Wilson & Dunlap, combination of characteristics is required for each student to 2011). Difficulties with emotion regulation are likely to result in enable relevant individualised planning and instructional strong emotional and/or behavioural reactions (e.g., visible support. Each student’s program will address their unique anxiety or crying) during interactions with staff and peers, preferences, interests, behavioural presentations, and learning which is likely to increase the risk of victimisation in the future, style with relevant goals and strategies to ensure they as these reactions have been found to encourage the experience educational success (Ivannone, 2003). perpetrator (Gray, 2004). Difficulties with communication may increase the risk of victimisation for individuals with ASD Focus on strengths-based engagement because assertiveness and effective communication are Engagement refers to the amount of time that the student is protective factors for coping during bullying situations (Haq & attending to and actively interacting in his or her social and Le Couteur, 2004). In addition, restricted interests and nonsocial environments. Engagement and participation are stereotyped behaviours that characterise ASD are likely to be critical to success at school and have been cited as one of the perceived by staff and peers as being odd or different, best predictors of positive student outcomes (Rogers, 1999). resulting in an increased risk of being marginalised within the Engagement of students with ASD will be unlikely unless there peer group and targeted by aggressive peers (Dunn, Saiter & Rinner, 2002). 6 All students have to deal with the ‘hidden curriculum’. This refers to Students with autism are difficult for staff to relate to unspoken cultural and social information and rules governing the social intuitively (Jordan, 1999). Both staff and students with autism aspects of school life and adolescence, dictates how students should have to work cognitively at overcoming these failures of interact with peers, teachers and other adults and what ideas and empathy. In addition, staff in schools do not feel supported behaviours are considered acceptable or unacceptable.

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is some deliberate instructional program design incorporating teaching plan for transition, generalisation and maintenance of preferred materials and activities, and capitalising on a learned skills. Students with autism typically have better visual student's interests and preferences (Hurth, Shaw, Izeman, than auditory processing, poor comprehension skills and poor Whaley & Rogers, 1999) and focus on strengths and organisational abilities. As a result students with autism weaknesses to determine the most appropriate supports and respond best when information is presented visually as well as intensity to meet individual goals (National Research Council, aurally (Rogers, 2013). 2001). Collaborative family involvement and support Ecological management Programs should be implemented consistently In addition to developing a program for the student across home school and community environments to have to facilitate skill acquisition, we need to consider ways in which maximum effect. Involving the family is the best way to we can adapt the environment to make it more achieve this. In the US, family involvement in the individual comprehensible and manageable for students with autism. planning process is mandated. This is not the case in Australia. This involves managing the physical and the social environment However, good practice in autism education emphasises the to minimise factors that are disruptive or disturbing to the importance of considering family preferences and knowledge student. To do this, attitudinal and social as well as physical of the child when determining the goals to be taught and the supports are essential, including the management of change methods by which instruction will be delivered (Iovannone, and facilitating transitions. Attitudes across the school 2003). A collaborative partnership with the family can community towards inclusion of students with autism in contribute to the effectiveness of interventions and regular classroom have a direct impact on the success of programming, particularly when the strategies are used in placements for students with autism (Simpson, et al., 2003). multiple environments. Leadership, a positive attitude, shared ownership and flexibility on the part of the whole school community are key to Academic curriculum adaptations and adjustments successful inclusion. Curricular modifications, general education classroom support and instructional methods underpin all placements of Multidisciplinary students with special needs in classrooms (Simpson, et al., Students with autism typically have complex needs 2003). In Australia, instructional adjustments proscribed by the across many domains—communication- speech-language, Australian Curriculum Assessment and Reporting Authority motor, sensory, behavioural and academic—and require (ACARA) which are relevant for students with autism include: multidisciplinary team input in a comprehensive program • provision of alternative representations of teaching planning and implementation process. Multidisciplinary input is and learning materials (e.g., visual representation) also required to work with classmates and the whole school and explicit, systematic instruction; community to develop the communication and social skills • motivating students through engagement with required to understand and support students with autism personal interests; (Simpson, et al., 2003). • organising and connecting knowledge, skills and values to promote generalisation, and Functional Positive Behaviour Support (PBS) • using naturally occurring learning opportunities to PBS is a well-established, effective framework that enhance individual learning goals (ACARA, 2013). involves functional assessment based on understanding the purpose of, and environmental triggers for, a specified Specific curriculum content for students with autism problem behaviour in order to identify variables that reliably Communication and social interaction problems are predict and maintain problem behaviours (Horner & Carr, core deficits in individuals with ASD. Children with autism 1997). Functional behaviour assessment (FBA) using data display particular difficulties in the development of social gathered through indirect measures (e.g., interviews) and reciprocity. Specialised curriculum should include systematic direct measures (e.g., observations of antecedents, instruction in social engagement skills, including initiating and behaviours, and consequences) is used to develop responding to social bids, appropriate recreational or leisure individualised support plans. The primary goal of PBS is to skills, and language comprehension and communication. In enhance the individual's quality of life by expanding his or her addition, educators should consider the functionality of the existing behaviours and adjusting the learning environment. skills targeted within the curriculum. Focus should be on those The secondary goal is to make problem behaviour ineffective, skills that (a) are most likely to be useful in the student's life to inefficient, and irrelevant (Carr et al., 1999). control his or her environment, (b) will increase the student's independence and quality of life, and (c) will increase the Systematic instruction, structure, routine, visual supports student's competent performance (Dunlap & Robbins, 1991). Systematic instruction involves carefully planning for instruction by identifying goals, outlining procedures for Data -based evaluation and review teaching, implementation, evaluation of effectiveness, and Comprehensive evaluation should include evaluation adjusting instruction based on data (Westling & Fox, 2000). of the provision of services and supports, evidence of benefit Students with autism do better in classrooms and programs from participation and education, evidence of facilitation of that are structured and predictable (Olley & Reeve, 1997) and membership in class/school and demonstration of appropriate where the curriculum (activities, schedule, environment) is participation (Simpson, et al., 2003). clear (i.e., comprehensible) to both the students and educators. Systematic instruction also provides a structured

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In summary, educational programs for students with American Psychiatric Association (APA). (2000). Diagnostic and statistical autism are most effective when they are developed by a manual of mental disorders (4th ed., text rev.). Washington, DC: multidisciplinary team working closely with parents and other The author. Ashburner, J., Ziviani, J., & Rodger, S., (2010). Surviving in the key people in the child’s life. Effective programs are based on mainstream: Capacity of children with autism spectrum disorders the strengths and needs of the individual and take into account to perform academically and regulate their emotions and the priorities of families and resources available in their behavior at school. Research in Autism Spectrum Disorders, 4, 18– environment. Programs should support the participation of 27. students with autism in both academic and non-academic Barnard, J., Prior, A., & Potter, D. (2000). Inclusion and autism: Is it activities at school, include strategies to maintain and working? London: The National Autistic Society. generalise mastered skills and facilitate independence. Baron-Cohen, S., Leslie, A., & Frith, U. (1985). Does the autistic child have a ‘‘theory of mind’’? Cognition, 21, 37–46. Effective programs will be evidence-based, functional, holistic, Brewin, B.J., Renwick, R., & Schormans, A.F. (2008). Parental perspectives and motivating for students, will reflect the student voice and of the quality of life in school environments for children with be developed with respect. Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 23, 242-252. Support for school communities Carr, E. G., Horner, R. H., Turnball, A. P., Marquis, J., Mclaughlin, D.M., Tobias (2009) noted that teachers require knowledge McAtee, M. L., …. Braddock, D. (1999). Positive behavior support for about the nature of ASD in order to understand and to people with developmental disabilities: A research synthesis. interpret students' behaviour correctly, as well as needing to Washington, DC: American Association on Mental Retardation. acquire the skills needed to deal with complex issues that may Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences arise. Children with ASD require more specialised teaching among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 266–77. doi: techniques than those typically included in general teacher 10.1007/s10803-011-1241-x education and specialist training in special education needs Chiang, H., & Lin, Y. (2007). Reading comprehension instruction for (National Autistic Society 2006). Recent evidence suggests that students with autism spectrum disorders: A review of the teacher knowledge of specialist, individualised approaches to literature. Focus on Autism and Other Developmental Disabilities, teaching children with ASD is one of the keys to successful 22,259–267.doi: 10.1177/10883576070220040801 inclusion (Keane, Aldridge, Costley & Clark, 2012). Chiang, H., Cheung, Y., Hickson, L., Xiang, R., & Tsai, L. Y. (2012). Predictive factors of participation in postsecondary education for high school leavers with autism. Journal of Autism and Building capacity in schools to improve educational Developmental Disorders, 42, 685–696. doi:10.1007/s10803-011- outcomes for students with autism 1297-7 Examples of effective strategies at a whole school Department of Education & Science. (2006). An evaluation of educational level include; reduced class sizes, provision of adequate provision for children with autistic spectrum disorders. Dublin, teacher planning time, appropriately trained support personnel Ireland: The author. and provision of relevant staff professional development. The Attorney-General’s Department. (2005) Disability Standards for . leadership, vision and capacity of the school principal to Education. Canberra: Commonwealth of Australia Retrieved from www.ag.gov.au/RightsAndProtections/HumanRights/DisabilitySt support the inclusion of students with disability including andards/Pages/Disabilitystandardsforeducation.aspx autism, is critical and principals need to be supported by the Dunlap, G., & Robbins, F. R. (1991). Current perspectives in service educational system. Despite recent renewed emphasis on the delivery for young children with autism. Comprehensive Mental implementation of the Disability Standards7 in schools Health Care, 1, 177-194. Dunn, W., Saiter, J., & Rinner, L. (2002). Asperger syndrome and sensory nationally, outcomes for this population continue to be poor processing: A conceptual model and guidance for intervention compared to both typical and non-typical peers. A targeted, planning. Focus on Autism and Other Developmental Disabilities, 17, consistent, autism-specific approach based on school 172–185. leadership and capacity building at a national and a state level is Gray, C. (2004). Social Stories ™ 10.0: The new defining criteria and required to improve educational outcomes for this population guidelines. Jenison Autism Journal: Creative Ideas in Practice, 15, 4, to enable young people with autism to participate and 2-21. contribute. Gresham, F. M., & Kendell, G. K. (1987). School consultation research: Methodological critique and future research directions. School

Psychology Review. 16, 306-316. References Haq, I., & Le Couteur, A. (2004). Autism spectrum disorder. Medicine, (32), 61–63. Australian Bureau of Statistics (ABS). (2012). 4428.0 - Autism in Australia, Horner, R. H., & Carr, E. G. (1997). Behavioral support for students with 2012. Retrieved from severe disabilities: Functional assessment and comprehensive www.abs.gov.au/ausstats/[email protected]/Latestproducts/4428.0Main% intervention. The Journal of Special Education, 31, 84-104. 20Features52012?opendocument&tabname=Summary&prodno= Howlin, P., & Moss, P. (2012). In Review: Adults with autism spectrum 4428.0&issue=2012&num=&view disorders. Canadian Journal of Psychiatry, 57, 275. Australian Curriculum Assessment and Reporting Authority (ACARA), Hurth, J., Shaw, E., Izeman, S. G., Whaley, K., & Rogers, S. J. (1999). Areas 2013. Students with Disability Retrieved from of agreement about effective practices among programs serving www.acara.edu.au/curriculum/student_diversity/students_with_ young children with autism spectrum disorders. Infants and Young disability.html Children, 12(2), 17-26. Iovannone, R., Dunlap, G., Huber, H. & Kincaid, D. (2003). Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 7 Disability Standards on Education clarify the obligations of Australian 18(3), 150–165. education and training service providers, and the rights of people with Jordan, R., Jones, G., & Murray, D. (1998). Educational interventions for disability, under the Disability Discrimination Act 1992. children with autism: A literature review of recent and current

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research. Research Report 77. Birmingham: School of Education, spectrum disorders. Journal of autism and developmental disorders, University of Birmingham. 44(7), 1520-1534. Jordan, R., (1999). Autistic spectrum disorders. An introductory handbook House of Commons Education and Skills Committee. 2006. Special for practitioners. London: David Fulton Ltd. educational needs. HC 478-1. London: The Stationery Office Keane, E., Aldridge, F.J., Costley, D. & Clark, T. (2012) Students with Limited. autism in regular classes: a long-term follow-up study of a satellite Simpson, R. L. (1995). Children and youth with autism in an age of class transition model. International Journal of Inclusive Education, reform: A perspective on current issues. Behavioral Disorders, 21, 16(10), 1001–1017.doi: 10.1080/13603116.2010.538865 7–20. Kim, J.A., Szatmari, P., Bryson, S.E., Streiner, D.L., & Wilson, F.J. (2000). The Simpson, R.L., de Boer-Ott, S.R., & Smith Myles, B., (2003). Children and prevalence of anxiety and mood problems among children with young adults with autism spectrum disorder: Inclusion of learners autism and Asperger syndrome. Autism, 4, 117-132. with autism spectrum disorders in general education settings. Lilley, R., (2014). Trading places: Autism inclusion disorder and school Topics in Language Disorders, 23, 116-133. change. International Journal of Inclusive Education, 19(4), 379-396. Smith-Myles, B., Trautman, M.L., & Schelvan, R.L. (2004). The hidden doi: 10.1080/13603116.2014.935813. Little, L. (2001). Peer victimization curriculum: Practical solutions for understanding unstated rules in of children with Asperger spectrum disorders. Journal of the social situations. Lenexa, Kansas: AAPC Publishing. American Academy of Child and Adolescent Psychiatry, 40), 995– Strain, P. S., Wilson, K., & Dunlap, G. (2011). Prevent-teach-reinforce: 996. Addressing problem behaviors of students with autism in general Marks, S. U., Shaw-Hegwer, J., Schrader, C., Longaker, T., Peters, I., education classrooms. Behavioral Disorders-Journal of the Council Powers, F., …. Levine, M. (2003). Instructional management tips for Children with Behavioral Disorders, 36, 160. for teachers of students with autism spectrum disorder. Teaching Tobias, A. (2009). Supporting students with autistic spectrum disorder Exceptional Children, 35, 50–54. (ASD) at secondary school: A parent and student perspective. Muris, P., Steerneman, P., Merckelbach, H., Holdrinet, I., & Meesters, C. Educational Psychology in Practice, 25, 151–65. doi: (1998). Comorbid anxiety symptoms in children with pervasive 10.1080/02667360902905239 developmental disorders. Journal Van Roekel, E., Scholte, R.H.J., & Didden. R. (2010). Bullying among National Autistic Society. (2006). B is for Bullied. London: The author. adolescents with autism spectrum disorders: Prevalence and National Research Council. (2001). Educating Children with Autism. perception. Journal of Autism and Developmental Disorders, 40, 63– Washington, DC: National Academy Press. 73. Olley, J. G., & Reeve, C. E. (1997). Issues of curriculum and classroom Westling, D. L., & Fox, L. (2000). Teaching students with severe disabilities structure. In D. J. Cohen & F. R. Volkmar (Eds.), Handbook of autism (2nd ed.). Inglewood Cliffs, NJ: Prentice Hall. and pervasive developmental disorders (2nd ed.; pp. 484-508). New Williams, K., & Roberts, J. (In Press). Understanding Autism. Australia: York: Wiley. Exisle Publishing. Ricketts, J., Jones, C. R., Happé, F., & Charman, T. (2013). Reading MacDermott, S., Williams, K., Ridley, G., Glasson, E., & Wray, J. (2007). The comprehension in autism spectrum disorders: The role of oral prevalence of autism in Australia: Can it be established from existing language and social functioning. Journal of Autism and data? Report commissioned by the Advisory Board on Autism Developmental Disorders, 43, 1–10. doi:10.1007/s10803-012-1619- Spectrum Disorders. 4 Zablotsky, B., Bradshaw, C. P., Anderson, C., & Law, P. A. (2013). The Rogers, S. J. (1999). Intervention for young children with autism: From association between bullying and the psychological functioning research to practice. Infants and Young Children, 12, 1-16. of children with autism spectrum disorders. Journal of Roger, L. (2013). Visual supports for visual thinkers. London: Jessica Developmental and Behavioral Pediatrics, 34, 1–8. Kingsley. Schroeder, J. H., Cappadocia, M. C., Bebko, J. M., Pepler, D. J., & Weiss, J. A. (2014). Shedding light on a pervasive problem: A review of research on bullying experiences among children with autism

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The Secret Agent Society Social-Emotional Skills Training Program for Children with Autism Spectrum Disorders

Renae Beaumont, PhD

The Social Skills Training Institute, the Autism CRC, Australia

Abstract

This paper provides an overview of the Secret Agent Society (SAS) social-emotional skills training program for children with autism spectrum disorders (ASD). The evidence-based program features several core components, including a computer game and other espionage-themed therapy games played during or between child group sessions, parent training sessions and resources, teacher tip sheets and a home-school monitoring and reward system. This paper describes the multiple theoretical foundations that the intervention draws on, including autism specific theories (e.g., theory of mind, weak central coherence), in addition to more general developmental psychology and child therapy intervention frameworks, such as cognitive-behavioural therapy and acceptance and commitment therapy. The evidence base currently supporting the program and the professional training model used to disseminate it are reviewed, together with next steps for program development and evaluation.

8Program Overview SAS has achieved both local and international acclaim. In 2014 alone, it was awarded the Autism Spectrum Australia Secret Agent Society (SAS) is a group-based National Advancement Award and the US Teacher’s Choice multimedia social skills program that was originally developed Learning Magazine Award for the Family (SAS Family Kit). The for 8 to 12-year-old children with high-functioning autism program is distributed by the Australian Cooperative Research spectrum disorders (ASD; Beaumont, 2008). The program Centre for Living with Autism Spectrum Disorders (Autism consists of small group ‘club meetings’ for children, parent and CRC), and to date, over 700 professionals in nine countries teacher information sessions and resources, real-life practice worldwide have been trained to deliver the intervention. missions, visual supports and a system to monitor and reward skill development at home and at school. The intervention can Theoretical Foundations be delivered over 12 or 24 sessions in a private practice, community or school setting. SAS is grounded in several different theoretical frameworks of ASD, in addition to drawing on the broader child The SAS computer game and other fun espionage- therapy and developmental psychology literature. Specifically, themed activities are used to teach children how to recognise SAS teaches children how to detect the thoughts and feelings emotions in themselves and others, express their feelings in of themselves and others, addressing theory of mind or appropriate ways, talk and play with others, cope with mistakes perspective-taking difficulties that are purported to underlie and transitions, and prevent and manage bullying and teasing. many of the social challenges faced by individuals on the Activities include the Helpful Thought Missile Game (shooting spectrum (Hoogenhout & Malcolm-Smith, 2014). The down unhelpful enemy thoughts with helpful thought intervention also upskills children to integrate relevant missiles), the Secret Message Transmission Device walkie-talkie contextual, verbal and nonverbal clues to accurately interpret game (practising detecting how other people feel from their social situations – targeting weak central coherence difficulties tone of voice) and the Challenger Board Game (a role-play based (i.e. problems with focusing on irrelevant details and failing to game to practise the social-emotional skills taught in the see the ‘big picture’ [Pellicano, Maybery, Durkin & Maley, program). 2006]). Computerised ‘choose your own adventure’-style, virtual reality missions and a step-by-step problem-solving Children self-evaluate their success at practising formula (D.E.C.O.D.E.R) are used to address executive learnt skills at home and at school in a computerised Secret functioning difficulties with planning and set-shifting. These Agent Journal. A scene generator device can be used to program components help children to think more flexibly visually illustrate how skills were applied, optimally engaging about different solutions to social problems, rather than and supporting children who are visual learners and those with perseverating on unsuccessful coping strategies such as writing difficulties. Reproducible assessment measures with physical retaliation, escape or avoidance behaviours. demonstrated reliability and validity are also included to evaluate children’s social-emotional skill profile and to track SAS also draws on principles of applied behaviour their progress through the program. analysis (Matson, et al., 2012), with complex social skills broken down into component steps, and behavioural antecedents and consequences analysed and modified to bring about positive change in children’s behaviour. For example, a structured 8 Corresponding author: [email protected] Home-School Diary is used to monitor children’s skill usage on a daily basis at home and at school, with rewards provided in exchange for points earned. The program teaches cognitive-

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behavioural therapy strategies for coping with unpleasant depression, ADHD or disruptive behavioural disorder feelings (e.g., using relaxation ‘gadgets’ to feel happier, calmer diagnoses is also underway at York University, Canada. Early and braver), and recent research trials have included findings of the latter trial are showing positive outcomes for supplementary acceptance and commitment therapy activities children and families, both in terms of improvements in (cognitive defusion and mindfulness) for children who are children’s social functioning and affiliated mental health reluctant to challenge unhelpful thoughts or struggle to symptomatology. tolerate uncomfortable emotions. Typical child development literature informed the development of age-appropriate step- Professional Training Course by-step guidelines for the social skills taught in the intervention (e.g., the steps for talking and playing with To deliver the group SAS Program, professionals are others). required to attend a two-day practitioner training course. These active skills training courses are run throughout Australia and The Evidence Base involve a mix of didactic presentations, analysis and critique of filmed session footage, small and large group activities and Results from the initial randomised controlled trial of opportunities to practise delivering program content with the SAS Program (formerly called the Junior Detective Training professional guidance and support provided by the course Program) indicated that 76% of children with Asperger facilitator. Individual follow-up by phone or Skype supervision is syndrome who showed clinically significant impairments in provided to help professionals optimally tailor the program to their social skills on a parent-report measure at pre- meet the needs of their clients and workplace. For those intervention, improved to within the range of typically professionals wanting to integrate the SAS software into the developing children after receiving the program or by five existing work they do with children and families (rather than months follow-up. Improvements in children’s social- running the entire group intervention), a one-day Computer emotional functioning were shown on child, parent and Game Workshop is also being offered throughout Australia in teacher report measures and across both home and school 2015. An optional accreditation process is also available to environments (Beaumont & Sofronoff, 2008). recognise competence in program delivery and to allow professionals to take on a regional advisor role. A subsequent mainstream school repeated- measures evaluation of a variant of the SAS group program Next Steps suggested that the intervention was effective in improving the social-emotional skills and behaviour of 8 to 12 year-old A randomised controlled trial of the SAS group students with ASD at both home and school (Beaumont, program is scheduled to commence in the USA later this year Rotolone & Sofronoff, in press). In addition, an independent with children who have an anxiety or disruptive behavioural between- and within-groups evaluation in Autism Spectrum disorder diagnosis without comorbid ASD. Future program Australia (Aspect) specialist classes for students with ASD updates and research will focus on further technological showed program improvements were maintained at 12 enhancements to the intervention and practitioner training months follow-up on all outcome measures (Einfeld et al., in model. These include the proposed development of an app to preparation). The latter trial also showed that the provide additional support for children’s skill generalisation and improvements in social-emotional functioning made by exploring the utility and effectiveness of alternative modes of students over the SAS intervention period were significantly delivering practitioner training (e.g. webinars and online greater than those achieved over a longer period where training). Development of whole-of-class and teen and adult students received their standard school social-emotional variants of the program are also currently underway, and are curriculum and that these were unrelated to children’s gender, scheduled to be evaluated as strategic projects within the age (8 to 14 years), IQ, verbal comprehension level or socio- Autism CRC. economic status (Einfeld et al., in preparation). For further information about the program or A pilot repeated-measures study of the SAS Program practitioner training courses that are being offered throughout with children who have social-emotional challenges but Australia, please go to www.sst-institute.net without an ASD diagnosis showed comparable treatment effects to those achieved with children who have ASD References (Pearson, 2014). Positive findings have also been demonstrated in studies using baseline-comparison phases for Beaumont, R., Rotolone, C., & Sofronoff, K. (in press). The Secret Agent Skype-assisted parent delivery (Sofronoff, Silva, & Beaumont, in Society social skills program for children with a high-functioning autism spectrum disorders: A comparison of two brief versions for press) and face-to-face individual variants (Tan, Mazzucchelli, & schools. Psychology in the Schools. Accepted May 2014. Beaumont, 2014) of the intervention. Beaumont, R., & Sofronoff, K. (2008). A multicomponent social skills intervention for children with Asperger syndrome: The Junior A randomised controlled trial of a light-touch tele- Detective Training Program. Journal of Child Psychology and health delivery variant of the program is currently in progress in Psychiatry, 49(7), 743-753. doi:10.1111/j.1469-7610.2008.01920.x Queensland, New South Wales and Victoria, Australia. An Einfeld, S., Sofronoff, K., Gray, K., Roberts, J., Taffe, J., Clark, T., … Howlin, additional randomised controlled trial evaluating the P. (in prep). An evaluation of a social skills program for children with autism in specialist schools. effectiveness of an SAS program variant for youth with Autism Hoogenhout, M., & Malcolm-Smith, S. (2014). Theory of mind in autism Spectrum Disorders and one or more comorbid anxiety, spectrum disorder: Does DSM classification predict development?

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Research in Autism Spectrum Disorders, 8(6), 597-607. Retrieved Pellicano, E., Maybery, M., Durkin, K., & Maley, A. (2006). Multiple from cognitive capabilities/deficits in children with an autism spectrum http://dx.doi.org.ezproxy.library.uq.edu.au/10.1016/j.rasd.2014.02 disorder: “Weak” central coherence and its relationship to theory .005 of mind and executive control. Development and Psychopathology, Matson, J.L., Turygin, N.C., Beighley, J., Rieske, R., Tureck, K., & Matson, 18(1), 77-98. Retrieved from: M.L. (2012). Applied behavior analysis in autism spectrum http://dx.doi.org.ezproxy.library.uq.edu.au/10.1017/S0954579406 disorders: Recent developments, strengths, and pitfalls. Research 060056 in Autism Spectrum Disorders, 6(1), 144-150. Retrieved from: Sofronoff, K., Silva, J., & Beaumont, R. (in press). Parent delivery of the http://dx.doi.org.ezproxy.library.uq.edu.au/10.1016/j.rasd.2011.03 Secret Agent Society social-emotional skills training program for .014 children with high-functioning autism spectrum disorders. Focus Pearson, R. (2014). Preliminary evaluation of the ‘Secret Agent Society’ on Autism and Other Developmental Disabilities. social-emotional skills programme with typically developing children Tan, Y.L., Mazzucchelli, T.G., & Beaumont, R. (submitted). An evaluation of (Unpublished doctorate thesis). University of Queensland, individually delivered Secret Agent Society social skills program for Australia. children with high-functioning autism spectrum disorders: A pilot study.

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PhD Spotlight

High-functioning Autism Spectrum Disorders in Adulthood: Investigating Factors that Influence Psychosocial Outcomes

David Zimmerman1, Tamara Ownsworth1, Analise O’Donovan1, Jacqueline Roberts2, Matthew J Gullo3

1School of Applied Psychology and Griffith Health Institute, Behavioural Basis of Health, Griffith University, Australia 2School of Education and Professional Studies, Griffith University, Australia 3Centre for Youth Substance Abuse Research (CYSAR), University of Queensland

Corresponding author: [email protected]

Abstract

High functioning autism spectrum disorders (HFASD) is a chronic neurodevelopmental disorder characterised by deficits in social interaction, communication difficulties, sensory impairments and atypical behaviour. Despite increasing prevalence rates and a high comorbidity with both physical and psychiatric disorders, very little is understood regarding the psychosocial outcomes for these adults. As such, it is broadly hypothesised that self-perceptions, emotion regulation and coping styles would impact psychosocial wellbeing. Divided into three studies, this research paper aims to: 1) Investigate the relationship between HFASD symptom severity and psychosocial functioning (i.e., social and mental health functioning) of adults individuals with HFASD; 2) Elucidate the associations between HFASD symptomatology, neuropsychological functioning, health-related cognitions, emotion regulation, coping strategies and psychosocial outcomes; and 3) Develop and test an explanatory model of psychosocial functioning for adults with HFASD. Such research would help to provide a clearer understanding of HFASD symptomatology in adulthood and clarify the role of self-perceptions, emotion regulation and coping strategies on health and wellbeing. Moreover, this research could help facilitate more effective psychological interventions.

Study Overview Due to the multidimensional nature and complex symptomatology of ASD, no one theory comprehensively High-functioning autism spectrum disorders (HFASD) explains the full characteristics of the disorder. However, three is a chronic neurodevelopmental disorder largely characterised dominant cognitive explanations include: 1) The Theory of Mind by deficits in social interaction, communication difficulties, hypothesis that is, the inability to account for the mental states sensory impairments and atypical behaviour (Attwood, 2007; of others (Baron-Cohen, Leslie, & Frith, 1985; Baron-Cohen, Baron-Cohen, Wheelwright, Hill, Raste, & Plumb, 2001; Kasari & Richler, Bisarya, Gurunathan, & Wheelwright, 2003; Baron- Rotheram-Fuller, 2005; Martin & McDonald, 2004). Autistic Cohen, et al., 2001); 2) executive dysfunction – that is, being Spectrum Disorders (ASD) has an estimated prevalence in driven by a need for sameness; problems with switching Australia of 6.3 per 1,000 individuals, affecting approximately attention; a tendency to perseverate; and difficulties with half a million families (MacDermott, Williams, Ridley, Glasson, & impulse control; (Ambery, Russell, Perry, Morris, & Murphy, Wray, 2007). However, there is a dearth of empirical research 2006; Hill & Bird, 2006; Ozonoff, 1998; Ozonoff, Pennington, & investigating the psychosocial outcomes for adults with Rogers, 1991); 3) weak central coherence – that is, difficulties HFASD. perceiving the overall meaning or gist in a given situation (Frith & Frith, 2003; Frith & Happé, 1994; Happé, 1999). Each of these This small body of literature suggests that explanations can help to account for the different primary and psychosocial outcomes for adults with HFASD are poor to secondary symptoms of HFASD and have been extensively moderate at best. The majority of individuals report persisting researched in clinical populations, particularly with children and social impairments, poor occupational achievement, high adolescents (Castelli, Frith, Happé, & Frith, 2002; Perner, Frith, dependence on others and a lack of partner relations. In Leslie, & Leekam, 1989; Szatmari, Tuff, Finlayson, & Bartolucci, addition, cognitive (i.e., IQ and executive function tasks) and 1990). linguistic ability (i.e., verbal IQ, tests of reading and comprehension) have consistently predicted positive Numerous studies have documented the outcomes in adulthood (Cederlund, Hagberg, Billstedt, comorbidity of HFASD with both physical and psychiatric Gillberg, & Gillberg, 2008; Engstrom, Ekstrom, & Emilsson, disorders (Cederlund et al., 2008; Gillberg & Cederlund, 2005; 2003; Howlin, Goode, Hutton, & Rutter, 2004; Jennes- Reiersen, Constantino, Volk, & Todd, 2007). For adolescents Coussens, Magill-Evans, & Koning, 2006; Larson & Mouridsen, with HFASD, research has shown that they perceive 1997; Renty & Roeyers, 2006; Szatmari, Bartolucci, Bremner, themselves differently, report lower self-esteem and have Bond, & Rich, 1989; Venter, Lord, & Schopler, 1992; see poorer psychological outcomes than typically developing peers Appendix A for a summary of these articles). (Capps, Sigman, & Yirmiya, 1995; Lee & Hobson, 1998; Vickerstaff, Heriot, Wong, Lopes, & Dossetor, 2007; Williamson,

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Craig, & Slinger, 2008). Children with HFASD are likely to Moreover, this research could guide the focus of tailored and demonstrate patterns of emotion dysregulation and adopt potentially more effective psychological interventions. fewer adaptive coping mechanisms when compared to neurotypical children (Konstantareas & Stewart, 2006; Rieffe et Aims al., 2011). Research has also indicated a clear neurocognitive influence whereby individuals with HFASD are significantly The aims of the present project are threefold: impaired on executive function tasks, particularly those that 1. Investigate the relationship between HFASD symptom target response initiation and intentionality (Hill & Bird, 2006; severity and psychosocial functioning (i.e., social and Pennington & Ozonoff, 1996). mental health functioning) of adults individuals with HFASD; Despite extensive research on the aetiology and 2. Elucidate the associations between HFASD sequelae of HFASD, there is a paucity of empirical studies that symptomatology, neuropsychological functioning, have investigated the role of executive dysfunction in the core health-related cognitions, emotion regulation, coping impairments of HFASD (i.e., social, communicative and sensory strategies and psychosocial outcomes; impairments and atypical behaviours). Furthermore, there are a 3. Develop and test an explanatory model of psychosocial limited number of studies investigating the stress-buffering role functioning for adults with HFASD. of psychological resources, such as self-perceptions (i.e., health-related cognitions, self-concept and perceived social Design support), emotion regulation and coping strategies for adults with HFASD (Khanna, Jariwala-Parikh, West-Strum, & The proposed project will be divided into three Mahabaleshwarkar, 2014; Renty & Roeyers, 2007). The stress- studies (see Appendix B for a diagram of the proposed buffering model has been proposed to explain the structures). Study One will employ a matched control design mechanisms affecting health outcomes when individuals with HFASD participants matched on gender, age and experience stress (Cohen, 1988; Cohen & Wills, 1985; estimated IQ and will compare their functioning on measures Wheaton, 1985). Specifically, this model asserts that during a of psychosocial and neuropsychological functioning, self- stressful event an individual’s health or wellbeing is buffered perceptions, emotion regulation and coping strategies. Study by perceived psychological and physical resources (i.e., social Two will incorporate a correlational design whereby the support). There is considerable evidence that perceived associations between HFASD symptom severity, availability of psychological resources moderates and/or neuropsychological functioning, self-perceptions (i.e., health- mediates the influence of stress on health outcomes in a related cognitions, self-concept and perceived availability of range of clinical settings (Berkman & Styme, 1979; Cohen, social support), emotion regulation, coping strategies and Mermelstein, Kamarck, & Hoberman, 1985; Evers et al., 2001; psychosocial variables will be investigated. Study Three will McCracken, 2005; Payne et al., 2012; Rosengren, Orth-Gomer, involve a large on-line survey that aims to develop and test an Wedel, & Wilhelmsen, 1993; Steptoe, 2000). explanatory model of psychosocial functioning and examine the role of psychological resources (i.e., self-perceptions Applying the stress-buffering model in the context of [health-related cognitions, self-concept, perceived availability HFASD, symptom severity (i.e., social, communicative and of social support] emotion regulation and coping strategies in sensory impairments and atypical behaviours) could be psychosocial wellbeing for adults with HFASD (see Appendix C conceptualised as the stressor experienced by these for proposed hypotheses for all three studies). individuals. When managing these symptoms, the individual’s psychological resources (e.g., self-perceptions [i.e., health- Participants related cognitions, self-concept and perceived availability of social support], emotion regulation and coping strategies) may Based on previous research (Ambery et al., 2006; Hill moderate and/or mediate the relationship between symptom & Bird, 2006; Ritvo et al., 2011), the expected effect size for the severity and psychosocial outcomes. Thus, although high levels present study ranges from d = .57-.2.01. As such, sample sizes of symptom severity would be expected to relate to poorer were determined by a priori power calculations using G*Power psychosocial outcomes, engaging psychological resources to 3.1 (Faul, Erdfelder, Buchner, & Lang, 2009). With power of .80 manage these symptoms may have a stress reducing or and alpha set at .05 (one-tailed testing), power analyses buffering effect on wellbeing. indicated that sample size requirements were approximately 35 per group in the matched control study. However, due to In summary, adults with HFASD are often confronted likely attrition of participants from the present study (e.g., by various stressors associated with their disorder (Attwood, individuals not meeting inclusion criteria, participant 2007) and are faced with numerous situations that require withdrawal and missing data), a larger sample will be recruited. both the regulation of emotions and employment of adaptive As such, 50 participants in the HFASD group (i.e., Study One coping strategies (Baron, Groden, & Groden, 2006; Myles, and Two) and 50 participants for the matched control group 2003). As such, it is broadly hypothesised that self- (Study One only) are deemed appropriate. An additional 150 perceptions, emotion regulation and coping styles would individuals with HFASD will be recruited for Study Three (i.e., n impact their psychosocial wellbeing. Such research would help = 200). to provide a clearer understanding of HFASD symptomatology in adulthood and clarify the role of self-perceptions, emotion Individuals with HFASD will be recruited through regulation and coping strategies on health and wellbeing. convenience sampling from various ASD support services or

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clinics across the Brisbane metropolitan area (e.g., Asperger Regulation Questionnaire (ERQ; Gross & John, 2003); and 5) Services Australia and Minds and Hearts). A gender ratio of coping strategies will be measured using the Cybernetic Coping 2.4:1 (male:female; Baron-Cohen et al., 2003) is likely, thus it is Scale (CCS; Edwards & Baglioni, 1993). estimated that approximately 35 males and 15 females will be recruited for Study One and Two. The control group (Study One Dependent Variables only) will be recruited through convenience sampling from the The measures of psychosocial outcomes will include Griffith University subject pool as well as the researcher’s social the following: an objective outcome rating scale of social network. To meet the desired sample size for Study Three (i.e., functioning based on Lotter’s (1978) social adjustment scale minimum n = 200), individuals with HFASD will be targeted (range from Very Good-Very Poor); Mental Health: Depression through established networks and affiliated relationships with Anxiety and Stress Scales-21 (DASS-21; Lovibond & Lovibond, other AS and autism bodies throughout Australia and other 1995) and the Rosenburg Self-Esteem Scale (RSES; Rosenberg, similarly developed countries (e.g., New Zealand, United States 1965). and the United Kingdom). A gender ratio similar to that of Study One and Two is anticipated for Study Three. Expected Analytic Procedures

Procedure and Materials Study One: Comparing psychosocial and neuropsychological functioning, self-perceptions, emotion Approximately 50 adults with HFASD and 50 matched regulation and coping strategies in adults with HFASD to matched controls will complete a selection of self-report questionnaires controls: A set of multivariate analysis of variance (MANOVA) as well as a brief cognitive test battery (Studies One and Two). tests will be conducted to investigate the between group Administration of the test battery will take place in two differences on measures of psychosocial functioning, separate phases: 1) Self-report questionnaires will be neuropsychological functioning, self-perceptions, emotion completed either online or in hard copy format; 2) Face-to-face regulation and coping strategies. administration of a cognitive test battery will then be conducted. The rationale for administering the full test battery Study Two: Examining the associations between HFASD over two sessions is to reduce the burden of assessment for symptomatology, neuropsychological functioning, self- individuals. For Study Three, an additional 150 individuals with perceptions, emotion regulation, coping strategies and HFASD will complete only the first phase of the test battery as psychosocial outcomes: Correlation analysis will be conducted an online survey. Appendix D outlines the full test battery between HFASD symptom severity, neuropsychological measures, administration methods and approximate duration functioning, self-perceptions (i.e., health-related cognitions, of testing for all three studies self-concept and perceived availability of social support), emotion regulation, coping strategies and psychosocial Independent Variables outcome variables. HFASD symptom severity will be measured using the Ritvo Autism Asperger’s Diagnostic Scale – Revised (RAADS-R; Study Three: Proposed model of factors influencing Ritvo et al., 2011) which examines the following four areas: psychosocial functioning for adults with HFASD: Mediation Social Relatedness, Circumscribed Interests, Language, Sensory analyses will be conducted using the test of indirect effects Motor deficits. The Wechsler Abbreviated Scale of Intelligence and biased corrected confidence intervals (Preacher & Hayes, (WASI; Wechsler, 1999) will be administered to provide an 2004). Moderated regression analyses will be conducted using estimate of intelligence for matching purposes. the process macro as outlined by Hayes (2009). Together,

The following tests of neuropsychological functioning these analyses will be applied to test a proposed model of will also be administered: Hayling Test (Burgess & Shallice, psychosocial functioning for adults with HFASD. This model will 1997; assesses dysexecutive difficulties in response initiation, investigate both the potential moderating role of self- concept formation and response suppression); Delis-Kaplan perceptions (i.e., health-related cognitions, self-concept and Executive Function System Sorting Test (D-KEFS; Delis, Kaplan, & perceived availability of social support) and the mediating Kramer, 2001) provides a standardised indication of higher- functions of emotion regulation and coping strategies in the level cognitive functions); Letter Number Sequencing (LNS; relationship between HFASD symptom severity and Wechsler, 2008 assess working memory ) and The Awareness psychosocial outcomes. Variables included will be based on of Social-Inference Test – Revised (TASIT-RMcDonald et al., both theoretical perspectives and the results of Study One and 2006 measures social perception). Two.

The variables that comprise psychological resources Ethical Considerations will include self-perceptions (i.e., health-related cognitions, self- concept and perceived availability of social support), emotion Participants will be closely monitored for signs of regulation and coping strategies. Self-perceptions will be emotional distress during the data collection phase. Individuals measured using the following tests: A modified version of the that display any signs of distress will be offered immediate Illness Cognition Questionnaire (ICQ; Evers et al., 2001; a emotional support and debriefing and the opportunity to measure of health-related cognitions); 2) Six-Factor Self- terminate the session. Participants will be informed of their Concept Scale for Adults (SFSCS; Stake, 1994; a measure of self- right to decline participation in any aspect of the research as concept); 3) the Interpersonal Support Evaluation List (Cohen & well as their right to withdraw from the study at any point Hoberman, 1983; a measure of perceived social support); 4) without adverse effects. Fatigue will be managed by emotional regulation will be assessed using the Emotion administering the self-report questionnaires and cognitive test

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battery separately, thus reducing the burden of assessment. Cohen, S., & Hoberman, H. M. (1983). Positive events and social supports Provision will be made for breaks where necessary throughout as buffers of life change stress. Journal of Applied Social testing. Psychology, 13, 99-125. doi: 10.1111/j.1559-1816.1983.tb02325.x Cohen, S., Mermelstein, R., Kamarck, T., & Hoberman, H. M. (1985).

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Appendix A: Summary of Studies Examining Psychosocial Outcomes of Adults with AS and/or HFA

Study Outline & Methodological Strengths Authors Assessment of Key Constructs Key Findings Sample Characteristics and/or Weaknesses Cederlund et al. Prospective follow up study 1) Diagnostic Interview for Social and Communicative - 26% of those with AS had a restricted or Weaknesses: 1) The contrast (2008) comparing AS and Autism. Disorders (DISCO-10; Wing, Leekam, Libby, Gould, & Larcombe, poor outcome; 27% had a good outcome and between the two groups 2002) 47% had a fair outcome may not be ideal because of 70 males with AS (M age 21.6 2) Wechsler Adult Intelligence Scale – Third Edition (WAIS-III; - Lower FSIQ contributed to poorer the much lower IQ for the years; M IQ = 103) matched Wechsler, 2000). outcomes for those in the AS group. Autism group; thus, the to 70 male individuals with 3) Global Assessment of Functioning Scale (GAF; American - The AS group revealed a stable overall IQ study was only able to match Autism (M age 24.5 years; M Psychiatric Association, 1994) over time in contrast with a decline of on age. 2) Despite the IQ = 59.6) on age from a 4) Vineland Adaptive Behaviour Scales (VABS; Sparrow, Balla, & intellectual ability in the Autism group at authors belief that the two representative sample in Cicchetti, 1984) follow-up. groups were considered Sweden. 5) A structured neuropsychiatric assessment performed by the - 17% of individuals in the AS group had “roughly comparable”, it authors GAF scores above 70 (indicating would be more 6) Outcome criteria defined as either: Good outcome (e.g., being normal/near normal psychosocial advantageous to match the employed or having two or more friends); Fair outcome (e.g., functioning) AS group with a neurotypical one of the criteria specified under good outcome); Restricted - 84% of the AS group maintained a clinical sample in order to control for outcome (e.g., neither of the criteria specified under good diagnosis at follow-up. the effects of IQ. 3) No outcome and not meeting criteria for any other major females formed part of the psychiatric disorder); Poor outcome (e.g., severe handicap with study. no major psychiatric disorder but with clear verbal or non- verbal communicative skills); and Very poor outcome (e.g., severe handicap, unable to lead independent existence, no clear verbal or non-verbal communicative skills) Jennes- Compare quality of life (QOL) 1) Two self-administered questionnaires were completed: - Those with AS reported a significantly Weaknesses: 1) Small sample Coussens et al. of individuals with AS during (brief version) and the Perceived Social Support Network lower social and physical QOL when size. 2) At the time of the (2006) early stages of transition to Inventory. compared to the control group. study, there was no adulthood matched to 2) A semi-structured interview was conducted that probed for - Education, living arrangements and confirmation individuals in controls. information pertaining to independence, leisure activities and number of friends were similar between the AS group continued to social relationships. groups. meet the criteria for the 12 males (Mage 20.3 years) 3) Wechsler Intelligence Scale for Children – Third - Those with AS reported less positive condition despite having with AS matched to 13 Edition(Wechsler, 1991) employment experiences and preferred received a diagnosis years controls(Mage 20.5) on age solitary activities. earlier. and verbal IQ.

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(Renty & Investigating the predictive 1) Quality of life was measured using the Quality of Life - After controlling for age and gender, Strength: 1) The first Roeyers, 2006). value of disability and Questionnaire(QOLQ; Schalock & Keith, 1993) disability characteristics (i.e., FSIQ and AQ) empirical study to support characteristics for 2) Autism-Spectrum Quotient (AQ; Baron-Cohen, Wheelwright, did not explain significant variance in QOL investigate predictors of QOL QOL in adults with HFA. Skinner, Martin, & Clubley, 2001). scores. (a multidimensional 3) Interpersonal Support Evaluation List (ISEL; Cohen et al., - After controlling for gender and disability construct) as an outcome 58 adults (M age = 28.34 1985) - perceived informal support. characteristics, support characteristics variable. years; M IQ = 103.09 74.1% 4) Camberwell Assessment of Needs (CAN; Phelan et al., 1995) - significantly contributed 51.4% of the Weakness: 1) The mean AQ male) with HFA. received informal and formal support. variance in QOL scores. score was quite low in this 5) WAIS-III (Wechsler, 2000). - Perceived informal support (ISEL) and not sample (29.69). Baron-Cohen received informal support was significantly and colleagues (2001) positively associated with QOL (r = .55, p < recommend a score of 32+ .001). for clinically significant levels - Unmet formal support needs (CAN) was of autism specific traits. significantly negatively associated with QOL (r = -.63, p < .001) (Howlin et al., Adult outcomes for children 1) Autism Diagnostic Interview (ADI; Le Couteur et al., 1989) - IQ scores ≥ 70 were more likely to have a Weaknesses: 1) Only 44 2004) diagnosed with autism 2) Battery of cognitive and linguistic abilities: Full Scale, positive outcome. individuals received a FSIQ, Performance & Verbal IQ – WAIS-R (Wechsler, 1981); The British - High social outcome ratings were Mean FSIQ = 75.00; thus, the 68 individuals (males = 61; M Picture Vocabulary Scale (L. Dunn, Dunn, Whetton, & Pintillie, associated with higher scores on cognitive, data includes individuals not age =29 years; M FSIQ = 75) 1982); Neale Test of Reading Ability (Neale, 1977); Schonell language, reading and comprehension diagnosed with HFA. meeting criteria for autism Spelling Test (Schonell & Schonell, 1960) tests. They showed a greater use of social and an IQ >50. Mean age 3) Outcome ratings: Very Good = achieving a high level of language while abnormal language features during childhood = 7. independence, having some friends/ job (total scores 0-2); and ritualistic behaviours were less Good = generally in work but requiring some degree of support frequent. in daily living; some friends/acquaintances (total scores 3-4); - Overall outcome for individuals: Very Good Fair = has some degree of independence, and although = 12%; Good = 10%; Fair = 19%; Poor = 46%; requires support and supervision does not need specialist Very Poor = 12% residential provision (total scores 5-7); Poor = requiring special residential provision/high level of support; no friends outside of residence (scores 8-10); Very Poor = needing high-level hospital care/ no friends/ no autonomy (total scores 11) (Engstrom et Psychosocial functioning of 1) Overall social adjustment assessed using Lotter’s (1978) - Overall social adjustment for the Weaknesses: 1) The sample al., 2003) adults with AS or HFA outcome scale: Good outcome = normal or near normal social subsample: Good = 12%; Fair = 75%; and was not population based; life and satisfactory functioning at school or work; Fair outcome Poor = 12% therefore, results are not 42 individuals (M age = 30.8 = some social and educational progress despite significant or - Majority were living alone, had little generalisable to wider years; male = 24): 32 even marked abnormalities in behaviour or interpersonal partner relations and limited employment. society. 2) The study individuals with AS and 10 relationships; Poor outcome = severe handicap, no - Majority were living independently. contained a high proportion with HFA. independent social progress; Very poor outcome = unable to - One person in a lived-in relationship. of females which is not lead any kind of independent existence. - One person had a regular job. consistent with known A subsample of 16 (10 with 2) Semi-structured interviews were conducted using a - Majority required support (emotional and male/female ratios of HFASD. AS & 6 with HFA) were modified version of the CAN (Phelan et al., 1995). practical) 3) The higher than expected selected for a semi- 3) Public and private support was assessed using the grading - No individuals were married or had level of independent living structured interview to scale: none, low, moderate and high. children. for those in the AS group determine social adjustment. - Family support compensated where public may be a function of social

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support was not available. policy.

30 year follow-up study 1) Each of the 18 individuals met the criteria according to the - 63% of adults in the CA group had either a Weaknesses: 1) Individuals do (Larson & describing the outcome of ICD-10 for either CA or AS at intake. Children were grouped poor or very poor outcomes not comprise a Mouridsen, childhood autism (CA) and into four different IQ categories: Severe mental retardation (IQ - 13% of the AS group had a Poor outcome; representative sample of 1997) AS originally diagnosed as < 50); mild mental retardation (IQ 51-70); nearly normal 50% had a Fair outcome. No individuals in those diagnosed with CA or psychotic. intelligence (IQ 71-85); and normal intelligence (IQ > 85). the AS group were classified as having a AS; 2) It was not clear at 2) Demographic information was gathered at follow-up on very poor outcome. follow-up whether IQ scores 9 individuals with CA (3 vocational training and occupational status, disability pension, - In both groups, normal intelligence (i.e., IQ remained stable for both males) and 9 individuals with marital status and children, residence (e.g., independent living), > 85) predicted a Good outcome. groups; 3) The groups were AS (7 males). Mean age: CA = criminality, psychiatric morbidity and pharmacotherapy. - The majority of individuals in the AS group not matched on gender. 5.9 and AS = 9.2. Mean age at 3) Outcome was assessed at follow-up on criteria were registered with the labour market Strengths: 1) Very few studies follow-up: CA = 39.1 and AS recommended by Lotter (1978): Good, Fair, Poor and Very Poor whereas the majority of those in the CA have reported follow-up = 36.5 years. Outcome. group had never worked. studies spanning 30 years or more for individuals with AS.

(Venter et al., Follow-up study of 1) Battery of psychometric tests administered over both time - Verbal skills (PPVT) were the strongest Strengths: 1) The first known 1992) individuals with HFA and periods: WAIS-R or the WISC-R (Wechsler, 1981); Raven’s predictor of outcome measures (i.e., social study to look at autism predictive value of autism Progressive Matrices (Raven, 1960); Peabody Picture adaptive functioning and achievement severity symptoms as severity and cognitive skills Vocabulary Test(L. M. Dunn & Dunn, 1981); The Schonell scores). predictors of adaptive on outcomes. Graded Spelling Test (Schonell & Schonell, 1960), Neale - Current verbal IQ was the most consistent outcome in adulthood; 2) Analysis of Reading andEnright Diagnostic Math Test (Enright, predictor of outcome measures. Highlights the importance of 58 children (IQ > 60 [early M 1983; Neale, 1958); Autism Diagnostic Observation Schedule - Positive associations were evident education opportunities for IQ = 80.24; current mean IQ (ADOS; Lord et al., 1989) between intellectual functioning and autistic children and the = 79.21]; 35 males, 23 2) Parents were interviewed using the Autistic Diagnostic academic achievement influence this has on adult females) with HFA followed Interview(ADI; Le Couteur et al., 1989) according to ICD-10 - Early patterns of restricted behaviour and adaptive functioning. over a mean period of eight diagnostic criteria: language deviance, social deviance and language deviance predicted negative years (mean age at follow-up repetitive behaviours. outcomes. = 14 years). At follow up, all 3) The VABS(Sparrow et al., 1984) - Reading comprehension was the most individuals met the criteria severely delayed academic area. on the ADI. - Current social deviance, verbal IQ and verbal skills predicted academic achievement.

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Appendix B: Proposed Structure of Studies

Figure 1. Structure of study one: comparing psychosocial and neuropsychological functioning, self-perceptions, emotion regulation and coping strategies in adults with HFASD to matched controls.

Figure 2: Structure of study two: Examining the associations between HFASD symptomatology, neuropsychological functioning, self- perceptions, emotion regulation, coping strategies and psychosocial outcomes.

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Appendix B: Proposed Structure of Studies (Continued)

Figure 3: Structure of study three: Proposed model of factors influencing psychosocial functioning for adults with HFASD.

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Appendix C: Proposed Hypotheses for all Three Studies

Study One The following hypotheses are proposed for Study One: 1.1 Individuals with HFASD will perform significantly poorer on measures of executive functioning (e.g., response initiation, suppression and conceptual switching) and social cognition as compared to matched controls. 1.2 Individuals with HFASD will report significantly poorer global social functioning than matched controls. 1.3 Individuals with HFASD will report significantly poorer mental health when compared to matched controls as indicated by: a) less adaptive coping strategies; b) higher levels of emotion regulation difficulties; c) lower self- concept; and d) higher levels of depression, anxiety and stress. Study Two The following hypotheses are proposed for Study Two: 1.1 HFASD symptom severity would be significantly negatively associated with measures of executive functioning (e.g., response initiation, suppression and conceptual switching) and social cognition. 1.1.1 Severity of Social and Communication symptoms of HFASD would be significantly negatively associated with measures of social cognition. 1.1.2 Severity of Rigid/Repetitive symptoms of HFASD would be significantly negatively associated with measures of executive functions that target response suppression and switching/flexibility. 1.2 HFASD symptom severity would be significantly negatively associated with social functioning. 1.3 HFASD symptom severity would be significantly related to mental health outcomes as indicated by significant negative associations with self-esteem and significant positive associations with depression, anxiety and stress. 1.4 Performance on measures of social cognition (i.e., ability to recognise sarcasm and lies) would be significantly positively associated with global social functioning.

Appendix C: Proposed Hypotheses for all Three Studies (Continued)

1.5 HFASD symptom severity would be significantly negatively associated with measures of psychological resources (e.g., self-perceptions [health-related cognitions, self-concept, perceived social support], emotion regulation and coping strategies). 1.6 Measures of psychological resources (e.g., self-perceptions [health-related cognitions, self-concept, perceived social support], emotion regulation and coping strategies) would be significantly positively associated with social functioning and mental health measures Where specific predictions for Study One and Two have not been made, it is of interest to explore the associations between the remaining HFASD subgroups, neuropsychological functions, psychosocial outcomes and the relevant psychological resource variables.

Study Three As mentioned previously, SEM will be applied to test the proposed stress-buffering model of psychosocial functioning for adults with HFASD. This model will investigate the mediating and/or moderating role of psychological resources, as defined by self- perceptions, emotion regulation and coping strategies, in the relationship between HFASD symptom severity and psychosocial outcomes. As such, within this model it is expected that the following relationships would be observed: 1.1 HFASD symptom severity would be significantly negatively associated with measures of psychosocial functioning (i.e., social functioning and mental health measures). The relationship between HFASD symptom severity and psychosocial outcomes would be moderated and/or mediated by psychological resources as indicated by self-reported measures of self-perception (i.e., health-related

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Appendix D: List of measures, administration methods and approximate duration of testing

Construct and Measure Administration Method Study Time Severity HFASD Symptoms RAADS-Ra Self-report Online/Paper 1,2,3 25 mins Intelligence WASIb Objective Face-to-face 1 20 mins Neuropsychological Functioning Hayling Test Objective Face-to-face 1,2 10 mins D-KEFS Sorting Testc Objective Face-to-face 1,2 20 mins LNSd Objective Face-to-face 1,2 5 mins TASIT-Re Objective Face-to-face 1,2 25 mins Psychosocial Functioning Social Functioning Self-report Online/Paper 1,2,3 10 mins DASS-21f Self-report Online/Paper 1,2,3 3 mins RSESg Self-report Online/Paper 1,2,3 2 mins Psychological Resources Emotion Regulation ERQh Self-report Online/Paper 1,2,3 5 mins Coping Strategies CCSi Self-report Online/Paper 1,2,3 15 mins Self-Perceptions ICQ (Health-Related Cognitions)j Self-report Online/Paper 2,3 5 mins SFSCS (Self-Concept)k Self-report Online/Paper 1,2,3 10 mins ISEL-SF (Perceived Support)l Self-report Online/Paper 2,3 5 mins Total 160 mins Note: a = RAADS-R: Ritvo Autism Asperger’s Diagnostic Scale – Revised; b = WASI: Wechsler Abbreviated Scale of Intelligence; c = D-KEFS: Delis- Kaplan Executive Function System Sorting Test; d = LNS: Letter Number Sequencing; e = TASIT: The Awareness of Social-Inference Test – Revised; f = DAAS-21: Depression Anxiety and Stress Scales-21; g = RSES: Rosenburg Self-Esteem Scale; h = ERQ: Emotion Regulation Questionnaire; i = CCS: Cybernetic Coping Scale; j = ICQ: Illness Cognition Questionnaire; The ICQ will be modified to focus on cognitions relevant to people with HFASD (e.g., helplessness, acceptance and perceived benefits); k = SFSCS: Six-Factor Self-Concept Scale for Adults; l = I

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Clinical psychologists are specialists in the The Australian Clinical Psychology Association assessment and evidence-based treatment of (ACPA) represents only clinical psychologists who a wide range of mental health problems, have obtained the accredited qualications set including: down by the Psychology Board of Australia for • Addictions recognition as a clinical psychologist. • Attention Decit and Hyperactivity Disorders • Autistic Spectrum Disorders These are: • Bipolar Disorder AnA accredited Masters (two year) or Doctoral (three year) • Depression & Mood Difficulties degree in clinical psychology; • Drug & Alcohol Abuse • Eating Disorders and • Emotional & Behavioural Problems in Children A post-degree period of supervision to bring the total of • Fears, Phobias, Anxiety & Panic Attacks post-graduate training to four years. • Grief, Loss & Bereavement InI choosing an ACPA Member you are ensuring that your • Obsessions & Compulsive Behaviour clinical psychologist has completed this established standard • Pain and Somatic Symptoms of training. • Personality Disorders • Post-traumatic Stress Disorder Accredited Masters and Doctoral-level training in clinical • Psychotic Illnesses psychology: • Recovery from Childhood Trauma Provides the highest levels of training currently offered • Schizophrenia within the psychology profession in Australia • Separation Anxiety • Social Anxiety Facilitates the development of high-level, specialised skills • Sleep Disorders in mental health assessment, diagnosis, and evidence- based treatment planning and implementation Ask the psychologist providing your mental health treatment what accredited post-graduate Not all psychologists who are permitted to use the term qualications they have in clinical psychology. clinical psychologist in Australia have completed this level of training. Indeed, some have not completed any post-graduate To nd a clinical psychologist who is a member of qualications in clinical psychology. the Australian Clinical Psychology Association go to: International standards require post-graduate qualications in www.acpa.org.au and search: clinical psychology for all clinical psychologists.

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Engaging with the Autism Community: Beyond Tokenism?

Janine Robinson1 DClinPsy., Marie Claire Shankland2 MSc.

1 NHS Education for Scotland and CLASS, Cambridgeshire and Peterborough NHS Foundation Trust, England 2 NHS Education for Scotland, Westport, Edinburgh, Scotland.

NHS Education for Scotland is a special health board, responsible for supporting NHS services by developing and delivering education and training for those who work in NHS Scotland.

Abstract

The increased interest in autism is evident, but whether there is true agreement in the directions for autism research and service planning amongst researchers, practitioners and the autism community is less so. The autism community report that they are excluded from the process of such research and planning. If enabled to engage in a collaborative process, that is strategic, well-planned and embedded in policy, the community can contribute in a meaningful way to the direction of research and planning of services. The Scottish Strategy for Autism (2011) provides an example of strategic planning, and investment in collaborative partnerships by meaningful engagement with the autism community. The NHS Education for Scotland (NES) Autism Training Framework (2014) benefited from this national and strategic foundation. The autism community was actively involved in developing a framework of autism knowledge and skills for staff working in health and social care across Scotland.

9Background was general consensus of a need to focus on life skills for people with autism, to understand how people with autism Individuals affected by autism spectrum conditions, think and learn, and identifying how public services can meet their families and carers—henceforth referred to as ‘the the needs of the autism community (Pelicano, et al., 2013). autism community’ in this article—appear to have increasing This does not exclude the need to continue with research into opportunity to express their views regarding their service biological, neuropsychological and genetic factors; merely needs (Barnard, Harvey, Potter, & Prior, 2001; Rosenblatt, 2008; addressing the current significant imbalance. Stewart, 2008; Withers, 2008; Daly, 2008; Catterson, et al., 2013) and directions for research (Wallace, Parr, & Hardy, In spite of general consensus, the experience of 2013). Nonetheless, a recent detailed report in the UK found a engagement in research does not appear to be shared by the significant discrepancy between what the autism community researchers and the researched. The autism community regarded as research priorities and the actual research being commented on key elements of the experience, such as the conducted, primarily in understanding the “underlying biology, fundamental attitude of the researcher and the lack of brain and cognition of autistic people” (Pelicano, Dinsmore, & feedback about the outcome of the study. Barriers to Charman, 2013, p.5). The report argued for greater investment engagement were not fully understood or taken into account. in research areas “that affect the day-to-day lives of autistic For example, educational material that is not available in people and their families – research on public services, life language that is suitable for a lay person, the complexity of skills, cognition and learning and the place of autistic individuals people’s lives and lack of available time, given their in society” (Pelicano, et al., 2013, p.5). The authors further involvement in the life of the person on the autism spectrum; recommend more collaboration between research funders, and identifying research that may be of value or interest to researchers and the autism community “in order to advance their lives (Pelicano, et al., 2013). Given this detailed, if not progress in UK autism research and make a real impact on the sobering report concerning the mismatch of priorities (and lives of autistic people and their families” (Pelicano, et al., 2013, experience) of researchers and funding bodies compared with p.5). Such collaboration would understandably require effort the expressed views and hopes of the autism community, we and time, but formal partnerships would facilitate the active may wish to consider how well health and social care agencies involvement of the autism community at various levels of the fare in this regard. research process, including the ultimate outcome of translating research findings to the day-to-day concerns of the The Scottish Context autism community. The Scottish Strategy for Autism was launched in Of interest to those working in the health and social 2011, with clear directions, a ten-year timeframe and 26 care sectors, when the autism community and practitioners in recommendations to be met in 3 stages (The Scottish the UK were asked to rate priorities for autism research, there Government, 2011). The Autism Strategy Reference Group (The Scottish Strategy for Autism, 2013) was established along 9 with six further subgroups, each allocated key areas of Corresponding author: [email protected] responsibility, viz., cross-agency collaboration and involvement, wider opportunities and access to work, research and achieving

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best value for services. Subgroup 3 addressed matters of described in the framework would help improve the diagnosis, intervention and support and one key outcome of experience of services for people with ASD, their families and this work (The Scottish Strategy for Autism, 2013a) was to carers. Verbatim comments were recorded and selected to develop guidance on interventions for those on the autism populate the main document. The NES Autism Training spectrum (The Scottish Government, 2013a). Subgroup 6 Framework (NHS Education for Scotland, 2014) is hence the consisted of the autism community and representatives from result of contributions from practitioners, organisations and the Scottish Government, along with key professionals (The the autism community, on the firm foundations of a national Scottish Government, 2013b). Stakeholders from across the autism strategy. country have participated in the process of planning and implementing the key recommendations: the Scottish Key outcomes Government; Scottish Health Boards and Scottish Local Authorities; voluntary sector organisations and independent The NES project was not without its challenges. organisations providing autism services, along with education Attempting to engage with a range of stakeholders in a timely and training establishments and representatives of the autism manner during a short-term project presents difficulties. community across Scotland. The Psychology Directorate at NHS Feedback from some areas of the community indicated that Education for Scotland (NES) was invited to develop a training our initial expectations were too high – given the pressure of framework that would outline what all staff in NHS and social time and invitations for responses were unrealistic. More care services would require in terms of knowledge and skills in preparation and time was allocated for the second phase, viz., autism, in order to meet the needs of individuals with autism, the consultation and group discussion, and greater attention their families and carers. was paid to the practicalities of people being able to contribute. For example, participants were refunded expenses Key collaborative tasks for attending and lunch was provided, the meeting was held early afternoon to facilitate attendance, and participants were In keeping with the approach of the Scottish invited to send further comments from the day via email or Government regarding involvement of the autism community post. in the Scottish Strategy for Autism, NES identified key areas for comment and involvement from the autism community. Discussion - Common barriers Initially, this involved a small group of representatives carrying out a focused review of an existing NES autism web resource Common purpose: An autism training framework needs to for primary care practitioners (NHS Education for Scotland, consider the views and needs of those it is purporting to serve. 2006). The NES team presented the autism community with an Nonetheless, that framework is designed be used by update of progress at a Subgroup 6 meeting, with requests for practitioners, managers and service leads as well as training examples to be shared of experiences of good autism practice. providers in considering how best to deliver training of the Practitioners also conducted a review of the material workforce that makes a difference to the quality of life and the and feedback from both groups contributed to the updating of experience of the autism community when accessing services. the web resource (NHS Education for Scotland, 2006) and the The framework may not be fully accessible to the autism development of an e-learning module for primary care community, nor would they be able to comment on all aspects practitioners. Key themes gathered from the reviews further of it, but they would nonetheless be able to make a valuable informed the content of the training framework during its contribution to the work. development. Terminology: Questions of terminology commonly create The NES Autism Training Framework (NHS Education tensions, such as impairment versus difference, disorder versus for Scotland, 2014) was developed and refined over a period of condition, and person with autism versus autistic person. ~one year, culminating in a substantial document (and web- Documentation being used nationally across the workforce document) which could be used by individual practitioners, needs to be consistent in its language. It also needs to be their managers or service leads, to identify the autism training consistent with much of the scientific and clinical literature needs of staff employed in various roles in health and social internationally. Opting to retain ASD over ASC is one such care settings. Given the valuable input of the autism example. Whilst recognition of individual preference for community in the earlier focused task of reviewing the web- terminology is essential, the framework exists in the context of resource, it was evident that the voices of the autism a national autism strategy, national and international guidelines community would provide unique material for the document. and maintaining consistency of terminology seeks to reduce A consultation event was hosted in collaboration with Autism confusion. However, educating the workforce in the need to Network Scotland (an organisation established as a hub of respect the views of the autism community and how they may impartial direction to services for those affected by autism and wish to identify themselves or their relatives is fundamental to a platform for professional networking, good practice and the process of ensuring that individuals do feel heard, research discussions). Invitations were sent to a broad range of respected and part of the process. individuals affected by autism, including families, carers of those diagnosed with Asperger’s syndrome and those with Stereotypes: Engaging in a real way with individuals on the significant mental and physical health needs. The session spectrum, their families and carers requires careful aimed to introduce the framework prior to a workshop used to consideration if it aims to be meaningful and of benefit to all generate ‘real life’ examples of how the knowledge and skills

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involved. Addressing stereotypes is fundamental to proper Funding and acknowledgments: The Scottish Government engagement. Health Directorates and NHS Education for Scotland. The Autism Strategy Reference Group, The Scottish Autism Facilitating engagement: To move beyond the sense of self- Strategy subgroups and the various individuals and groups congratulation that we are involving the autism community, we representing the autism community in Scotland. need to reflect on the facts: many individuals and/or carers may not be in paid work; may not have the time or resources to devote to attending meetings that professionals, on the other References hand are paid to attend. We need to move beyond feeling that we are doing this for them. Barnard, J., Harvey, V., Potter, D., & Prior, A. (2001). Ignored or ineligible? The reality for adults with autism spectrum disorders. London: The Investment: The NES project was made possible by the National Autistic Society. Catterson, L., Robertson, A., Maguire, R., Brown, W., McIntyre, J., Birnie, P., networks already established by the Scottish Government ASD … Roberts, D. (2013). The Scottish Strategy Mapping Report. Reference Group and demonstrates that time invested in Glasgow, Scotland: The Scottish Government. Retrieved from developing those links can then bear fruit for other projects, http://www.autismstrategyscotland.org.uk including research. Daly, J. (2008). I Exist. The message from adults with autism in Scotland. Glasgow: The National Autistic Society Scotland. Retrieved from Investing time and resources into the process of http://www.autism.org.uk/get-involved/campaign-for- inclusion is imperative to establishing relationships and change/learn-more/our-campaigns/past-campaigns/i-exist/i- exist-campaign-in-scotland.aspx collaborative practices that are sustainable. Following the lead NHS Education for Scotland. (2006). Learning resource on autism of some research funding bodies, which support projects that spectrum disorders: for GPs and primary care practitioners. Retrieved demonstrate collaboration and involvement of the autism from http://asd.nes.scot.nhs.uk/ community, we can ensure from the outset, that engagement NHS Education for Scotland. (2014). The NES Autism Training Framework factored into service planning and consequent costs with for Scotland: Optimising Outcomes. A framework for all staff working respect to time and resources. with people with autism spectrum disorders, their families and carers. Edinburgh: NHS Education for Scotland. Retrieved from http://www.knowledge.scot.nhs.uk/home/learning-and- Strategic planning: Locating change within broader local and cpd/learning-spaces/autism-spectrum-disorder.aspx national strategies provides a structure and process in which National Institute for Health and Care Excellence. (2014). Autism: collaborative partnerships can be embedded. This can support recognition, referral, diagnosis and management of adults on the the development and coordination of good practice guidelines autism spectrum. Retrieved from and standards for engagement with people with autism, their http://www.nice.org.uk/guidance/cg142 families and carers. Pellicano, L., Dinsmore. A., & Charman, T. (2013). A future made together: Shaping autism research in the UK. London: Institute of Education.

Rosenblatt, M. (2008). I Exist. The message from adults with autism in Conclusion England. London: The National Autistic Society. Retrieved from http://www.autism.org.uk/get-involved/campaign- With financial constraints contributing to pressure on forchange/learn-more/our-campaigns/past-campaigns/i-exist/i- clinical and social services as well as funding for research, exist-campaign-in-england.aspx informed decisions need to be made in order to invest in The Scottish Government. (2008). Commissioning services for people on appropriate education, training and support so as to make a real the autism spectrum: Policy and practice guidance. Edinburgh: The Scottish Government. Retrieved from difference to the lives of those on the autism spectrum, their http://www.scotland.gov.uk/Resource/Doc/217371/0058243.pdf families and carers. Information gathered systematically from The Scottish Government. (2011). The Scottish Strategy for Autism. the autism community, not only researchers and practitioners, Scotland: Edinburgh: The Scottish Government. Retrieved from: will provide the optimal information on which to make http://www.scotland.gov.uk/Resource/Doc/361926/0122373.pdf informed decisions. In the context of national and international The Scottish Government. (2013). The Scottish Strategy for Autism: Menu guidelines (National Institute for Health and Care Excellence, of interventions. Scotland: The Scottish Government. Retrieved 2014; Scottish Intercollegiate Guidelines Network, 2007), from http://www.scotland.gov.uk/Resource/0043/00438221.pdf Scottish Intercollegiate Guidelines Network. (2007). SIGN 98: Assessment, national strategies, (The Scottish Government, 2008; The diagnosis and clinical interventions for children and young people Scottish Government, 2011) and implementation plans (The with autism spectrum disorders. Edinburgh: NHS Quality Scottish Government, 2008), opportunities are available for Improvement Scotland. Retrieved from active engagement with all stakeholders. http://www.sign.ac.uk/guidelines/fulltext/98 The Scottish Strategy for Autism. (2013). Autism Reference Group. Lessons learned from the Scottish experience Retrieved from suggest that timely, focused engagement with clear directions http://www.autismstrategyscotland.org.uk/reference- group/reference-group.html and expectations from the start and a basic mutual The Scottish Strategy for Autism. (2013a). Autism subgroups – Group 3: understanding that any engagement is for mutual benefit is Diagnosis, intervention and support. Retrieved from possible. There is no guarantee that agreement will be http://www.autismstrategyscotland.org.uk/sub-groups/group- reached, or that true representation is possible, but if the 3.html process is established with the right attitude and approach and The Scottish Strategy for Autism. (2013b). Autism subgroups – Group 6: is embedded in policy, successful engagement is more likely Users and carers. Retrieved from and the impetus for change established. http://www.autismstrategyscotland.org.uk/sub-groups/group- 6.html

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Stewart, S. (2008). I Exist. The message from adults with autism in Northern Withers, L. (2008). I Exist. The message from adults with autism in Wales. Ireland. Belfast: The National Autistic Society, Northern Ireland. Cardiff: The National Autistic Society, Cymru. Retrieved from Retrieved from http://www.autism.org.uk/get- http://www.autism.org.uk/get-involved/campaign-for- involved/campaign-for-change/learn-more/our-campaigns/past- change/learn-more/our-campaigns/past-campaigns/i-exist/i- campaigns/i-exist/i-exist-campaign-in-northern-ireland.aspx exist-campaign-in-wales.Aspx Wallace, S., Parr, J., & Hardy, A. (2013). One in a hundred: Putting families at the heart of autism research. London: Autistica.

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Client and Carer Perspective

In this issue, Thomas, and his father, John, speak about their experiences in living with autism.

Thomas’ Perspective bit of exercise. Usually I will take my note pad with me so I can collect my thoughts. Can you tell us a little bit about what you're doing, where you're working and some of your interests? You may have had meetings with professionals who work I currently work for Autism Spectrum Australia with people on the spectrum in the past (such as speech (Aspect) in their Communications team. I also have a long love pathologists, occupational therapists, employment services). for all kinds of stories, whether it is television shows, movies If there’s one piece of advice you would give professionals on and comic books. how to better service those with autism, what would it be? I would say that books and theoretical stuff can only What has been harder for you than it might be for others? take you so far. If you want to be really great, you must be Growing up, I had difficulty with time management fearless and understand the world that the person in the and understanding other people’s reactions or behaviours, spectrum is in. You must understand what makes those on the such as sarcasm. As time has gone on, I have gotten better. spectrum tick and why they may be sensitive to certain sensory Sure, there have been some slip ups as time goes by, but today things - whether it is sights, sounds, smells, touches or even they are rare. tastes. All of these sensitivities are necessary to understanding someone on the autism spectrum. What have you done to overcome challenging obstacles? I have my fair share of ways to overcome obstacles. What do you think makes you different, quirky or unique to Currently I am learning a lot of independent activities. I just others? built my first computer, I am cooking more and I want more I am eccentric and I'm a bit full on when I meet new independent projects. Long ago I thought that if you keep people. This means when it comes to romantic relationships, hacking at something you will eventually get it. Sadly this is only women can get deterred by my forwardness. I have found true some of the time. methods around this though. By remembering my past mistakes, I restrict my emotions so that they don't come at As time has gone on, I’ve realised there are people like a hurricane. alternative ways to solving a problem. My latest method is to research as much as you can on a topic before you tackle a If you could tell the world one piece of advice to project, a problem or whatever you do. I also believe that it is better understand those on the spectrum, what good to have a lot of people to look on a project and have them would it be? offer their advice. I would say to be mindful of the emotions that one is going through whether they are on the autism spectrum, deaf or What's something that people may not know about those on don't even have a disability. I have heard so many stories about the spectrum? how a child with autism is having a meltdown and people The big thing that people don’t understand about judge the mum or dad for being a bad parent. That’s just autism is that we’re all different. When you have met one wrong. person on the spectrum, you have met one person on the spectrum. When it comes to people with autism, don’t treat I was recently at a round table discussion on disability, them like the last person with autism, or compare them to and the judicial justice system. We talked about how more fictional celebrities like Sheldon Cooper. judges need to understand that the people with the disability are affected by the environment around them. So before you How do you feel about common stereotype of people with judge someone on how they are behaving, ask them what autism being compared to characters like Rain Man or their current environment is doing to them and I’m sure you’ll Sheldon Cooper? get a better insight into how they’re feeling. I hate how people constantly say to us, “Oh you’re like Sheldon Cooper or Rain Man”. It gets really annoying, because John’s Perspective there are many things that they can’t do that plenty of us can do. This means we have to deal with a ludicrous stereotype When did you first notice something about Thomas which that is set up by someone who doesn’t truly understand us. triggered the thought that he may be on the spectrum?

What's something that people may not know about you? Thomas’ mum, Jody, noticed earlier than me that That's a hard one. People don't know that I'm a there was something there. We really didn't know anything walker. I love all kinds of walks, mainly because I usually have about autism. I had never heard of Asperger's syndrome until my head in front of a computer screen for most of the day. So I Thomas’s counsellor, Mary, called us in and asked if we could need a little bit of time to help my brain relax and have a little have him examined by a psychologist.

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even high functioning people on the autism spectrum are still Jody would worry about Thomas’ high temperatures very quickly labelled and pigeon-holed. These people are way as a baby, late speech development, obsessions with collecting behind the eight-ball. Let me just relate a story here to you. and how everything had to be placed in a certain way. She After Thomas was found to have Asperger’s, he had left school would raise these concerns to me but I would brush it aside and was looking for a job. I had to take him to Centrelink in saying it would work out in the long run or as he grew up. What Penrith. This was for the purpose of government employees I couldn’t understand was Thomas’ lack of coordination and there finding out Thomas’s skills and capabilities (which is a timing in playing soccer. While kids around him were lot). The unhelpful man who interviewed us there was quick to progressing, Thomas was trying really hard but not going tell us that he was the qualified one in the room and he would anywhere. be making the judgement. He told me I was not to say a word and that Thomas was to answer all questions. By the second We thought that autism was something that really question, I either coughed or winced and was told to leave. We stood out in someone and therefore didn’t initially consider it. had the psychologist report with us and presented it to him. It wasn't until we had to move that his life was turned upside After fifteen minutes Thomas emerged from the interview down. The bullying and lack of caring by a majority of teaching room. Within the week this clown had made the call that there staff at his school exceeded all acceptable tolerances. We could was nothing wrong with Thomas and no assistance would be have sent him to another school but we knew it wouldn’t help given. Mind you having said this we have met some fantastic him. people at Centrelink who have been a great help to Thomas.

Jody suggested, and I finally agreed, that Thomas As a parent, is there something you wish that society could should see a counsellor because he was seriously depressed. do or say to better understand those on the autism Once Mary interviewed Jody, and then at another date me, it spectrum? If so, what would that be? was like a scary revelation when she explained autism and To society we would like to say it takes all kinds to Asperger’s to us. Yet at this point in his life (16 years old), I was make this world great. People on the spectrum are one of the frightened at how Thomas was going to successfully complete cogs in the mechanism that makes this world go round and his education as he was still getting bullied and was close to interesting. To patronise and then categorise makes you worse sitting his year 10 certificate and then Higher School Certificate. than the person you think you are. I still wonder how he achieved the fantastic results he did considering the bullying – he is nothing short of amazing. It Find time to listen, look and understand people who just goes to show if someone gives you a fair go at something are different. You might just learn something about yourself to you are passionate about and are good at, then they would make you a better person. When I was young I used to marvel have an ace up their sleeve. at how the old people would sit on the veranda and talk about how society was a lot closer in the past. Back then people What's one thing you would tell a parent who has recently would help each other, stop and talk a while, look after each received a diagnosis of autism or what's something you wish other and their properties. Now I am the grey man making you would have been told? those same statements. I suppose the main thing when parents find out their child has autism is not to panic. A diagnosis is a revelation, a Is society becoming a media categorised community? light to a path, a path to how to understand what your child has Are the two main social requirements today self-obsession and the best ways to deal with it all. and materialism? Is loneliness and injustice so acceptable that rather than find solutions, excuses are easier? If I could turn Give your child love and understanding. I feel the best back time! way to do this is through positive reinforcement. When they make mistakes or fall short of the mark, express the good that Do you have any memories of Thomas from when he was a was achieved and the choices that could have been made to child that sums up his creative and unique way of thinking or achieve a better result. acting? The memories of Thomas as a child that sum up his As a parent you tend to kick yourself that you did not unique way of acting and thinking! He was never embarrassed do something sooner or you question your own integrity. Every with doing or saying something if he enjoyed it or saw others parent loves their children equally and unreservedly. By beating getting a kick out of it. yourself up about not acting earlier you are holding back on the love your children are in need of. He once auditioned for the main role in the school play 'The Wild Things'. Placing a bin in front of the class, the You may have had meetings with professionals who work teacher asked students to come up and show what they would with people on the spectrum in the past (such as speech do with the bin if they were the wild thing. When Thomas' turn pathologists, occupational therapists, employment services). came he destroyed the bin, got the part and drama was never If there’s one piece of advice you would give to professionals the same in school again. on how to better service people with autism and their families, what would it be? Thomas has always put everything into whatever he Our advice to professionals is to be more empathetic has had to say or do. He has never wanted to hurt anybody with these people who have been diagnosed. Understand that even at the worst of the bullying. He hates seeing people hurt.

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We're sure Thomas inspires you all the time, if not every day. As part of Aspect’s latest positive awareness campaign, ‘a different brilliant’ which celebrates the differences of those on the spectrum, can you tell us something we may not know about him that you celebrate? If there is one thing that stands out to celebrate about Thomas it is this - we thank God every day for giving us the privilege, the joy and excitement of raising such a wonderful person. His laughter, talk and emotions are something we live for every day, and he provides them by the bucket load.

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Early Career Clinical Psychologist Forum Report

Matthew Csabonyi, MPsych. (Clin.)

ACPA – Victorian Committee

On the 21st of March 2015, seventeen early-career ECCP Issues clinically-trained psychologists convened for the first early career clinical psychologist forum in Australia. 'Early-career' was 1. Undervaluing of ECCPs defined as including those within five years of completing the requirements of a masters or doctorate program in clinical Lack of knowledge regarding the depth and breadth psychology. The forum was held at The University of of clinical psychology training and lack of understanding of the Melbourne and was funded and supported by the Australian registrar program were identified as contributing factors to Clinical Psychology Association (Victorian Committee). ECCPs being undervalued within both the public and private sectors. Many participants reported having been treated by The purpose of the forum was to convene a group of employers as trainees within their roles despite being fully early career clinically-trained psychologists (ECCPs) to discuss a registered psychologists having completed the same level of set of key questions regarding the issues early career clinical training as most clinical psychologists. professionals are currently facing within their profession. The key questions were designed to identify both the issues and ECCP requirements for supervision and professional potential solutions so that clear recommendations could be development were identified as another contributing factor made for relevant stakeholder organisations to address them. relevant primarily to the public sector. Participants raised The main organisations considered relevant for addressing concern that the cost of providing for these requirements is a early career issues were the Australian Clinical Psychology deterrent for employers in hiring ECCPs, making ECCPs Association (ACPA), the Australian Psychological Society Clinical undesirable in comparison to potential employees from other College (APS CCLIN), and the Psychology Board of Australia disciplines with fewer ongoing costs. (PBA). 2. Impact of the registrar program on finances Four key stakeholder representatives presented to the ECCPs on the early career psychology perspective, the The cost of supervision was reported as the major national committee of ACPA, the clinical registrar supervisor's impact (approximately $6,500 per year and quadruple the perspective, and the public employer's perspective. The requirement of other registered clinical psychologists), as well presentations addressed three key questions: 'What are the as the cost burden of completing 40 hours of professional main issues affecting early career psychologists from your development (double the requirement of other registered perspective, both in the workplace, in your organisation, and in clinical psychologists). Many workplaces do not fund the the profession more generally?'; 'What do you see as potential required supervision or appropriate professional development solutions or ways forward to address these issues?'; and, 'What (even in the public sector, some workplaces only fund is your role or your organisations role in addressing these professional development that registrars consider to be below issues and how is that currently occurring?'. their competence level, such as introductory workshops or basic training courses). Following the stakeholder presentations, the ECCP participants took part in discussions in whole-group and small- 3. Impact of the registrar program on self-care group formats, reflecting on key points from the stakeholder presentations, and then addressing three key questions: 'What Isolation, burn-out, and lack of support were reported are the three most important/concerning issues affecting early as common experiences. Participants were concerned that career psychologists?'; 'What are potential solutions or ways because registrars wish to finish their programs as quickly as forward to address these three issues?'; and 'What would we possible, many will stay in undesirable or unsafe workplace like to see our professional societies or associations doing to situations in order to accomplish this. Situations where address these three issues?'. The answers to these questions registrars experience significant levels of bullying, are were collated in a whole-group discussion, and an individual encouraged to behave unethically, witness frequent unethical exercise completed where participants chose their preferred behaviour, are delegated a majority of highly complex clients, issues and solutions to address from the collated material. The or experience difficult or inadequate supervisory relationships, most popular issues and solutions discussed by the were provided as common examples. participants are presented below.

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Participants also reported that the list of competency available relative to the increasingly large number of ECCP areas outlined by the PBA for clinical psychology registrars is graduates. Participants also reported unequal division of labour unrealistic and unattainable for most registrars in their as a significant issue in both the public and private sectors for workplaces. Participants reported that given the current ECCPs. For example, participants reported often being difficult job market for ECCPs, they are often unable to delegated a higher number of very complex clients within strategically choose employment the way that many clinical teams than other workers even though work roles are the psychologists were able to in the past. As a result, participants same and salary between disciplines is comparable reported needing to spend unreasonable amounts of time 6. Lack of voice outside of their full-time work attempting to gain competence in all of the competency areas required by the PBA for their Although ECCPs represent a large portion of the programs. clinical psychology profession, they are under-represented at all levels of the profession. They are rarely represented at 4. Lack of evidence of competency outcomes meetings where decisions are being made, and consultation from ECCPs is rarely sought when changes are being Importantly, participants acknowledged and considered within the profession, even though ECCPs are supported the need to continue to raise standards for clinical often the primarily impacted cohort by those decisions and psychology training in Australia. However, they expressed changes. Additionally, there are few ECCP representatives on concern about the validity of the registrar program in either state or national committees either within the APS, accomplishing this, and the lack of evidence demonstrating its ACPA, or the PBA (this is currently being addressed by both effectiveness. Participants were concerned that continuing to APS and ACPA, although currently there are no ECCP raise standards without evidence of real outcomes would representatives within the PBA). merely 'pay lip-service' to raised standards and lead to further burn-out of ECCPs with no competence benefit. Participants ECCP Solutions considered that if there was no evidence that ECCPs who have 1. Guidelines for private employers completed the registrar program were more competent than ECCPs who did not complete it, then the process of the Professional societies should provide clear guidelines registrar program itself should be reviewed. for private employers regarding appropriate levels of remuneration for both salaried and contracted employees. 5. Limited job opportunities Recommendations should also address the trend in paying a percentage of earnings to the employer (i.e., is this the In the public system limited job opportunity was equivalent of paying for referrals?). Recommendations should particularly related to the increase in generalised roles over also be provided regarding provision of supervision (or a specialised roles. Participants reported that generic roles (such portion of required supervision). as “mental health clinician” or case-management roles) often do not make use of the skill-set of an ECCP. Participants 2. Guidelines for clinical psychology supervisors reported that ECCPs are often valued less in these roles than other disciplines because psychologists are not primarily Professional societies should provide clear guidelines trained in case management and are significantly more to private employers regarding provision of supervision at expensive than other disciplines because of the amount of reasonable fees, or should consider recommending a reduced supervision and professional required (particularly for flat-rate of supervision fee for registrars. registrars). Participants also reported needing to down-play their skills and level of training in their workplaces in order to 3. 40:20:10 approach to supervision avoid being perceived as elitist or arrogant, to maintain The PBA should consider changing the 40 hours of relationships, and to avoid discrimination or poor treatment. supervision requirement for each year of the registrar

program. A step-down approach is recommended in order to In the private system limited job opportunity was make the requirements financially attainable for registrars, as related mostly to poor salaries and high costs. For example, well as to represent growing competence during the program. participants reported that many ECCPs bulk-bill clients, but pay For example, in the first year 40 hours of supervision may be approximately 40 percent of their income to their employers, required, then 20 hours in the second year, and finally 10 hours leading to unreasonable take-home pay-rates (as low as $160- once endorsed. $200 per day). Likewise, in salaried positions ECCPs were reported to experience difficulty negotiating reasonable pay 4. Representation rates because of the work shortage for their cohort and the availability of workers from other disciplines. In comparison to Professional bodies should consider introducing other six- to eight-year trained professionals (such as lawyers quotas for early career clinical psychologist representatives on or physicians), participants reported that ECCPs are under- national and state boards and committees. These roles must remunerated considering the time, effort and competition be genuine consultative roles rather than token roles, or roles involved in completing eight years of clinical psychology where the primary objective is recruiting new members from training. the ECCP cohort to an organisation. Additionally, the PBA should consider introducing quotas for seeking consultation In both the public and private system participants from early career clinical psychologists for decision-making reported that there is a small number of ECCP positions purposes.

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5. Educate the public 8. Collect evidence

Professional bodies should consider focusing more PBA to consider collecting evidence or outcome attention on educating the public about the clinical psychology measurement data to demonstrate the outcomes of the profession. Clinical psychologists are a small cohort in the registrar program in terms of ECCP competence. Data should mental health arena. Education of the public and engaging also be collected regarding the psychological and financial them in advocating for clinical psychologists is therefore impacts of the registrar program so that this can be considered necessary in order to effect significant change in Australia. when deciding on further changes to training. Participants felt that the public often hold negative perceptions of clinical psychologists (e.g., greedy, over-priced, easy jobs – 9. Clarify the future of training although participants felt the opposite is true). Professional bodies should consider utilising current media tools such as PBA to consider clearly addressing ECCP concerns Facebook, Twitter or various advertising spaces such as print or about possible further changes to training requirements. internet advertisement. Professional bodies should consider Participants would like the PBA to provide clarity about the including consumer advocates in roles at all levels of our long-term vision and trajectory of clinical psychology training professional associations and committees. Including consumer requirements, and for ECCPs to have direct involvement in advocates in our committees will assist the committees to strategic planning. understand how to best market our profession to the public and will empower the advocates with greater knowledge so 10. Promote strengths of clinical psychology that they can educate the public effectively about our profession. The tension between psychology disciplines in Australia was raised by participants as negatively impacting 6. Educate employers their experience of the profession. Participants reported that the negative stance of some professional bodies (both clinical Professional bodies should consider methods of and non-clinical) towards other psychologists is a deterrent to educating employers of ECCPs and advocate on their behalf. joining those bodies. Participants would like professional Participants would like education and advocacy to focus on bodies to focus on promoting what clinical psychologists can ECCP competence rather than the needs that ECCPs have for offer employers and patients due to their training and avoid further training. Participants would like professional bodies to negative messages about the skills or competencies of other find ways of continuing to raise standards for the profession psychologists. Participants felt that this was especially whilst at the same time advertising ECCPs current competence important between the endorsement areas of psychology in to their potential employers. which the length of training requirements are the same as clinical psychology. 7. Professional body websites On behalf of ECCPs in Australia and the participants of Professional bodies should consider providing ECCPs the forum, the author thanks the Australian Clinical Psychology with dedicated portions of their websites or email list-serves, Association for their support of the forum. Please note that the and should consider providing ECCPs with a dedicated ECCP views expressed in the above report are not necessarily those budget. This will assist ECCPs to connect with one another, of the author, but are representative of the outcomes of enable networking, limit isolation and create a potential source discussions by the seventeen ECCPs at the 2015 Early Career of job applicants for employers. Clinical Psychologist Forum.

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Expressions of Interest

Associate Editor

AUSTRALIAN CLINICAL PSYCHOLOGIST

The Editorial Board of The AUSTRALIAN CLINICAL PSYCHOLOGIST invites expressions of interest from members to add to our dynamic team. Availability and commitment to share in the task of resourcing the latest in clinical practice for our readership are primary requirements. Assisted by annual face-to-face meetings, Associate Editors work co- operatively under the leadership of the Editor, and have specific responsibilities associated with the production of each journal. PhD desirable, but not essential.

Please send expressions of interest with a brief CV to the Editor, Dr Kaye Horley: [email protected]

October Issue

Supervision, Mentoring and Reflective Practice

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Editorial Policy and Guidelines

The Australian Clinical Psychologist is the official e-journal of Use Australian-English spelling. the Australian Clinical Psychology Association and is References must be according to the American published twice a year. Psychological Association (6th ed.) style. Ensure that both in- text citations and references in the Reference list are in the Aim correct format, and are accurate and complete. It is The Australian Clinical Psychologist provides for the preferable to use EndNote. dissemination of knowledge on topics of interest informative to clinical psychologists. Its focus is on the latest All text submitted must be original. The paper should not clinical theory and research relevant to clinical practice, have been published, or be under submission, elsewhere. including assessment, treatment intervention, training, and professional issues. Please ensure that submissions are made by the stated deadline. Late submissions may not be accepted. Content Submissions to the Australian Clinical Psychologist may Review Process include: All papers are reviewed by the Editorial Board and the • letters to the Editor Scientific Committee. • general articles, viewpoints, opinions, and comments Authors can expect the Editorial Board to review and change • articles of particular ethical and/or legal interest to content for clarity and style. The Editorial Board will the profession endeavour to make any significant revisions in consultation • research reviews with the author. The Editor reserves the right to include or • theoretical perspectives reject written works at any point in the publication process. • technology updates Final acceptance of papers follows peer review. • students' news and viewpoints • book reviews or Copyright • general information and announcements. Copyright with all papers rests with authors unless otherwise stated. From time to time, the Australian Clinical Psychologist will focus on topics or issues of interest and call for submissions Please contact the Editors with any questions. accordingly. The ACPA Editorial Board welcomes contributions and suggestions for topics from the Editorial Board membership. Editor Contributions Kaye Horley, PhD Submissions should be made electronically, in a Word document, to the Editor responsible for the relevant Associate Editors section: Giles Burch, PhD • Feature Articles, Research, and Client Perspectives: Fiona Jamieson, MPsych(Clin) Kaye Horley Jayanthi Raman, MA(Psych) [email protected] Dixie Statham, DPsych(Clin) • Youth Corner: Fiona Jamieson [email protected] Copy Editors • Student and Training Matters: Dixie Statham Cherine Habib, PhD [email protected] Bronwyn Williams, MPsych(Clin) • Ethics and Legal Dilemmas: Giles Burch [email protected] Design Ben Callegari, MPsych(Clin). Front artwork partially designed Author Guidelines by Freepik.com. Please observe the following word limits: Feature, General and Research Review: 2000–3000 words. October Issue: The names of all authors, qualifications, affiliations, and Supervision, Mentoring and Reflective Practice email (unless otherwise stated) must accompany manuscripts. Please include a brief biography. Contributions are invited from those with clinical, therapeutic, research, or other expertise. Please contact the An Abstract should accompany each manuscript: word limit Issue Editor with expressions of interest: 100–150 words. [email protected]

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