Submission to the Select Committee on Autism

Executive Summary

“Autism is both a medical condition that gives rise to disability and an example of human variation that is characterised by neurological and cognitive differences. The goal of evidence-based intervention and support is to alleviate distress, improve adaptation, and promote wellbeing. Support should be collaborative, with autistic individuals, families, and service providers taking a shared decision-making approach to maximise the individual’s potential, minimise barriers, and optimise the person–environment fit. Comprehensive, naturalistic early intervention with active caregiver involvement can facilitate early social communication, adaptive functioning, and cognitive development; targeted intervention can help to enhance social skills and aspects of cognition. Augmentative and alternative communication interventions show preliminary evidence of benefit in minimising communication barriers. Co-occurring health issues, such as epilepsy and other neurodevelopmental disorders, sleep problems, and mental health challenges, should be treated in a timely fashion. The creation of autism-friendly contexts is best achieved by supporting families, reducing stigma, enhancing peer understanding, promoting inclusion in education, the community, and at work, and through advocacy” ( Lai, Anagnostou, Wiznitzer, Allison and Baron-Cohen, 2020).

1 Dr Meng-Chuan Lai is Assistant Professor, Department of Psychiatry, University of Toronto and Staff Psychiatrist, Centre for Addiction and Mental Health & the Hospital for Sick Children, Toronto. He holds an honorary position at the Cambridge University Autism Research Centre, where he conducted his PhD and postdocs.

1 Refer to appendices in relation to: - Evidence- based support for autistic people across the lifespan: maximising potential, minimising barriers, and optimising person-environment fit ( Lai, Anagnostou, Wiznitzer, Allison and Baron-Cohen, 2020).

1. Introduction

PEERS Australia welcomes the opportunity to provide a submission to the Select Committee on Autism to address improvements in services, supports and environmental adaptations, that improve the quality of life for people with a diagnosis of autism and their families/carers.

Given the less than optimal outcomes for many people with a diagnosis of autism, a systems-level approach is critical. Approaches should focus on a.) implementation and adaptations (as needed) of existing interventions, b.) maximising individual potential by enhancing development and building skills, c.) reducing barriers to optimize development, and d.) strengthening person-environment fit ( across educational, community and work settings).

As such, this submission focuses on specific terms of reference regarding implementation of productive and meaningful services and supports for individuals with a diagnosis of autism across their lifespan.

2. About PEERS Australia

PEERS Australia is a registered charity established in 2018. At the heart of our work is the quality of life for people with a diagnosis of autism and their families/carers. The charity members are professionals with a background in coaching psychology, cognitive neuroscience, developmental science, and education. We have a number of volunteers who assist with a range of tasks who work in psychology, allied health, the arts, law and business, as well as people with lived experience of autism.

PEERS Australia supports investment in practice-based research that has positive and practical outcomes for individuals and their families/carers, and a collaborative approach which involves individuals, families, medical and health professionals, researchers, and industry workers to enable an integrative paradigm for all components of the support system.
Our work is focused upon building strengths, scaffolding self-determinism, celebrating neurodiversity, authentic inclusion and co-creating meaningful lives with individuals, but without

ignoring or dismissing the real problems or issues that people experience. The considerable degree of heterogeneity in traits and functional ability in people with a diagnosis of autism, precludes a one-size-fits-all approach to providing support, structuring services and facilitating environmental adaptations. In addition, heterogeneity for people with a diagnosis of autism may require multiple disciplines to support individuals as they transition from early life stages, through adolescence and into adulthood. PEERS Australia recommends a broad approach beyond traditional support and service delivery, that centers the person-environment fit in the aspects of a person’s life i.e. education settings, workplace and local communities.

PEERS Australia is committed to supporting people with a diagnosis of autism and their families/carers to improve outcomes and to enable them to engage in a life which has meaning and purpose. Also, adopting a systemic approach in domains such as sociocultural, educational and workplace is required to achieve sustainable much-needed change.

Prior to discussing the submission focus, challenges experienced by individuals with a diagnosis of autism are outlined below:

3. The Challenges experienced by individuals with a diagnosis of autism

The current reality is one in which many adolescents and young adults with a diagnosis of autism have poor social relationships, post–secondary education outcomes, as well as employment and independent living outcomes - and these are impacted by factors such as psychiatric comorbidity, socio-cultural factors, and the presence and magnitude of symptoms.

The challenges that people with a diagnosis of autism face and require support with, include developing their own identity, pursuing education and work opportunities, and living in a highly complex social world, amongst other things. These challenges experienced by individuals, can be better understood in the context of the unique socio-cultural changes that are experienced as the person with a diagnosis of autism attempts to navigate stages of development in their life.

The socio-cultural context and an understanding of its impact on the experiences of adolescent and young adults with a diagnosis of autism is essential. Challenges in social communication and executive function, as well as a propensity for restricted interests, alongside cognitive and behavioral rigidity, make developmental

transitions highly complex for people with a diagnosis of autism. Understanding the interaction between socio-cultural context and unique autism-related traits can help us to understand some of the negative outcomes of adolescents and young adults as they attempt to manage various life transitions.

The lifelong implications of autism are globally becoming a major focus of research as young adults and adolescents with a diagnosis of autism are the least likely of any disability category to attend tertiary education, to be competitively employed, or to live independently. Thus prioritizing research on adolescents and young adults with a diagnosis of autism to develop much needed integrative approaches is essential.

Research efforts are needed to improve and adapt interventions and optimize outcomes for young people. Translational research for example, focuses on translating science from the laboratory into the clinic - with the aim of translational research being improved healthcare. Translational research models indicate the importance of distinctive roles played by each member of a multi-disciplinary team that collectively agrees on the clinical question, the goal to be achieved and the required outcomes.

In reviewing research on practices to mitigate the challenges autistic individuals face and to improve life outcomes, two key themes are evident: -

1 Heterogeneity of autism

There is a tremendous heterogeneity across people with a diagnosis of autism with the magnitude, scope and directions of diagnostic symptoms varying greatly. Also by the time individuals reach adolescence and young adulthood, the heterogeneity increases, as shown by the wide variation in outcomes. Importantly, the degree of heterogeneity makes it challenging to conduct research, particularly considering how best to support someone with a diagnosis of autism. Some researchers propose that as autism lacks diagnosis-specific medical treatment, any consistent early predictor, or any specific life trajectory, and as autism diagnosis lacks biological and construct validity, a shift away from studying autism-defined samples is warranted.

2. Adaptive intervention approaches

The second strategy for mitigating the challenge of heterogeneity is to develop intervention approaches that can be flexibly adapted for each individual. Examples of existing adaptive proven interventions include The Program for the Education and Enrichment of Relational Skills (PEERS®) , The Self-Determined Learning Model of Instruction(SDMLI) and Acceptance Commitment Therapy (ACT). These examples highlight that the

tools for improving outcomes for autistic individuals are available. Whether it is medical therapies, Cognitive therapies, or the numerous evidence-based secondary education transition practices, these interventions for assisting adolescents and young adults already exist. Though research on adaptations for this population are ongoing, implicit in this theme, is the realization that in many ways, individuals with a diagnosis of autism may not require something that is qualitatively different from what others of a similar age need. In reference to the first theme, regarding heterogeneity, the variation across autistic individuals means that in any given domain, an individual may be more similar to their peers, than different. Therefore, we can assume, there will be areas in which we can expect treatment as usual to work, for example, slight modifications to self-determinism models.

We believe that the second theme, - adaptive interventions, offers effective pathways to improve outcomes for people with a diagnosis of autism. However, the question is, why are these tools not being widely used within this population? It may be that their outcomes are a result of the absence of evidence-based strategies or sub-optimal application of strategies that are being used. Thus, it is important to address the barriers to the implementation of best practice for professionals working with people with a diagnosis of autism. It is critical to understand what programs individuals are receiving in the real world and what barriers obstruct adoption, adaption and timely implementation of best practice.

We also need to prioritize the modification of cognitive approaches, such as ACT, to address comorbidities. Anxiety, specifically, is a major challenge for adolescents and young adults with a diagnosis of autism. Adapting ACT for example, involving training families/carers, inclusion of special interests, and scaffolding generalization of learnt skills in varying settings could involve research to delineate efficacy/cultural validity.

Another key priority for research is in examining secondary school transition practices for adolescents. Existing evidenced-based strategies could be examined or adapted for this population i.e., research of interventions to enhance greater self-determination could be highly valuable. Also, approaches to promote employability skills should be a priority, given the challenges faced by individuals in gaining and maintaining employment. Of note, extensive research is in process for the PEERS® for Careers program to assist with optimal transitions into the workplace.

In summary, the timely implementation of the numerous available evidence-based approaches and secondary education transition practices for assisting adolescents and young adults is needed if we are to maximise individual potential.

PEERS Australia calls on the Australian Government to:

Improve quality of and access to appropriate evidence-based practice that facilitate positive outcomes across individual, family, social, educational and employment domains. Supporting families is as important as optimising development of the individual. Parents/ carers often provide a micro-environment to assist development and caregiver mediated skill-building interventions, which are shown to have a positive impact across family and relationships. Training could incorporate psychoeducation, PEERS®, coaching skills, mindfulness-based stress reduction (MBSR), positive psychology approaches, modelling for resilience and emotional expression, and nurturing positive relationships across varying settings.
Improve quality of and access to appropriate evidence-based practice to support mental health and to implement preventative models at systemic levels. Mood disorder, anxiety, and ADHD may present during the adolescent period in particular, in addition to issues concerning sleep, sexuality, gender identity, adaptive skills, and vocational skill. Improved access to evidence-based treatment options for these commonly co-occurring psychiatric challenges could maximize developmental potential, independence, and quality of life.
Improve quality of and access to services and programs to enhance transitions from secondary education to post-secondary education and /or employment. Dissemination of training programs to develop specific skills for providers working with individuals to enhance transitions following post-secondary education. Training, could incorporate collaborative transition assessment, planning, integrating multiple perspectives, student-centered approaches, inclusivity, goal setting, adoption of strength-based approaches, hands-on experience, required modifications/ accommodations and reflect real-world demands. Importantly, in both educational and work settings there is a critical need to develop efficacious interventions that target the environment and not just a focus on individual adaptation.

Identify and trial promising efficacious approaches involving skilled and trained providers in collaboration with national and international agencies working in the field of autism and related fields. Sufficient evidence exists that indicates promoting self-determination is important for more positive outcomes for students transitioning to post-secondary education, employment, and independent living. Scaffolding self-determination can also play a core role in skill development in the domain of community living, job performance, social skills, and functional academics.
Identify and implement strategies, interventions and practices, that practitioners can use to improve employment outcomes for young adults. Strategies could involve checklists (to identify skills and prioritize the goals of young adults), ecological assessments (to assess both students and environments where students spend time specifically in employment settings) and person-centered planning (team meeting approach where the young adult is the focus and plays a major role in decision making and goal development). Also implementation of early career development experiences, work-based learning experiences, self-determination and self-advocacy skills, video modeling, and ongoing program evaluation could equip young adults with the skills needed to obtain competitive, integrated employment. Educators may need professional development in evidence-based practices to implement processes prior to final years of secondary school to promote strong transitions. Furthermore, the implementation of positive organizational coaching is of value in identifying unique talent and talent retention, improving effective leadership, team cohesion, conflict resolution, improving communication and engagement, and importantly enhancing workplace culture change.
Investigate the nature of the barriers to adoption, and timely implementation of the numerous available evidence-based approaches and secondary education transition practices for assisting adolescents and young adults. Most existing interventions have been developed in North America and European communities which are then often disseminated to other regions. To ensure timely delivery of best care for individuals and their families, we need to address barriers to adoption of promising national and international approaches as well as proven interventions.

This submission includes a PDF focusing on efficacious solution-focused approaches.

Appendix 1.

“A framework for the care and support of autistic people across the lifespan” ( Lai, Anagnostou, Wiznitzer, Allison and Baron-Cohen, 2020).

Appendix 2.

” Supporting autistic people across the lifespan through multidisciplinary care” ( Lai, Anagnostou, Wiznitzer, Allison and Baron-Cohen, 2020).