By Dr Jill Ashburner, Vicki Tomkins, Jaime Stackpoole, Autism Queensland

Understanding autistic individuals' sensory experiences enhances therapy communication. The Autism MYSET tool aids counsellors in this crucial support aspect

In April 2024, Autism Queensland launched a tool designed help counsellors – MYSET.

Our Counselling Australia team was at Parliament House for the MYSET launch to hear first-hand how this tool is facilitating communication between therapists and clients.

MYSET, which stands for ‘My Sensory Experience Tool’, is designed to empower autistic people to describe their sensory worlds to others.

Developed in collaboration with a diverse team of researchers and autistic consultants, it represents a groundbreaking approach to sensory exploration and advocacy.

What is MYSET?

Developed in collaboration with a diverse team of researchers and autistic consultants, it represents a groundbreaking approach to sensory exploration and advocacy.

• MYSET is a visual card-sorting tool designed to empower autistic and other neurodivergent children and adults to share their everyday sensory experiences.

• This includes exploring their preferences and needs, as well as identifying the impact of problem sensations on their daily life.

• A strategy and support plan is developed collaboratively with participants to enhance outcomes, support advocacy and minimise barriers to meaningful participation in life.
  
  

Where can MYSET be used?

MYSET can be used in a range of practice contexts, including schools, individual therapy, positive behaviour support planning, mental health support planning, supported accommodation and employment services.

Who can use MYSET?

Occupational therapists, speech pathologists, psychologists, counsellors, teachers and other professionals supporting autistic and other neurodivergent people.

Caregiver and educator versions of MYSET are provided to support very young children and people with high support needs.

Why do we need a tool like MYSET in therapy?

Listening to the voices of autistic people is crucial for better understanding their sensory experiences. Information about sensory processing is typically gathered through parent or caregiver questionnaires to provide information about unusual sensory issues of their autistic child. Data may also be collected through teacher questionnaires or direct observation. The perspective of the autistic child or adult is less commonly taken into account.

MYSET was originally developed for research – specifically, data collection purposes. Therapists who knew about MYSET in research wanted to use the tool clinically.

Why is it so important?

Reports from caregivers can be valuable as families often adapt their routines to accommodate autistic people’s sensory preferences by reducing their exposure to sensory experiences that they find unpleasant (Bagby et al., 2012). Nevertheless, according to the principles of person-centred practice (Taylor & Taylor, 2013), it is imperative that autistic people’s views about their sensory issues are also heard. Williams (1996) highlighted the need to listen to ‘the autistic voice’ to better understand their sensory experiences. Increasingly, autistic advocates are calling for the voices of autistic people to be heard. They recommend exploring better ways to garner the views of all autistic people, including children and adults with communication challenges (Leadbitter et al., 2021).

Sensory experiences are unique to each individual. Other people’s perspectives are an interpretation of what the autistic person is actually experiencing, which may or may not be accurate. Therefore, to understand these experiences, it is necessary to move beyond standardised norm-referenced sensory processing assessments.

MYSET does not attempt to provide numerical scoring aimed at differentiating typical and atypical responses. Rather, MYSET yields nuanced qualitative information about sensory experiences that are unique to the person’s life context.

MYSET aims to empower autistic people to describe their sensory worlds to others. Eliciting the perspective of autistic people can sometimes be difficult because they often experience challenges in communicating their experiences (Kwok et al., 2015). Communicating sensory experiences is particularly challenging because sensory processing is an abstract concept. For example, the distress autistic people experience in crowded, noisy environments may not always be identified as a sensory issue. However, autistic people have also been shown to have relative strengths in processing pictures as compared to words (Kamio & Toichi, 2000). MYSET embraces this strength in visual processing by combining visual cues with simple text on cards to support autistic people to share their everyday sensory experiences.

MYSET adopts a card-sorting prioritisation method, which has already proven to be effective in the development of Autism Queensland Goal Setting Tools, including the:

• Family Goal Setting Tool: Disability Version (Rodger et al., 2012)

• Family Goal Setting Tool: ASD Version (Jones et al., 2018)

• Adult/Adolescent Goal Setting Tool (Ashburner et al., 2023; Autism Cooperative Research Centre, 2021).

As autistic adults find that impromptu or unstructured dialogue can contribute to their social anxiety, communication support including mediating objects (such as cards with pictures) can provide a way to initiate and sustain social interactions (Müller et al., 2008). MYSET further engages autistic people to share potential strategies that may assist them to manage their everyday sensory challenges as well as advocate for supports and accommodations.

Connect with the key team behind the tool

Dr Jill Ashburner

Jill’s career in the disability sector has spanned over 4 decades, and she has held a number of senior occupational therapy positions in education and disability-specific organisations. Her doctoral study explored the relationship between the sensory processing challenges of autistic children and their educational outcomes. Since 2007, she has been the manager of research and development at Autism Queensland, where her research has focused on the education of autistic students, the practices and professional development of therapists, service delivery via tele-practice, services for autistic adults including post-school transition, goal-setting and employment, and sensory processing. Jill has been interested in the sensory processing differences of autistic people for more than 20 years, and her work in this area has involved a number of research projects, including the development of MYSET.

Vicki Tomkins

Vicki has 15 years of practical experience as an occupational therapist, helping to deliver better outcomes for diverse communities. She is passionate about universal design, evidence-based practice and giving a voice to those who often go unheard. During her engagement in research development and commercialisation at Autism Queensland, Vicki was a key collaborator in the design, development and evaluation of tools to support self-determination for autistic and other neurodivergent people. As a senior community inclusion consultant, she continues to advocate for inclusive practices that reduce barriers and that support participation for all people, in all places and all spaces.

Jaimie Stackpoole

Jaimie is the project consultant for the Autism and Mental Health Project at Autism Queensland and a proud autistic person and ‘ADHDer’. He is also a peer mentor for groups at Autism Queensland and works alongside the professional and learning development team, co-facilitating workshops. Jaimie completed his undergraduate and honors degree at Queensland University of Technology (QUT) in 2022, with his thesis looking into post-sexual experiences of the LGBTQIAP+ community. He is currently studying his Master of Professional Psychology at Griffith University. Jaimie is passionate about neurodiversity-affirming practice and believes it benefits everyone. He has a keen interest in the areas of gender and sexuality, autistic women, and mental health and autism. In his spare time, Jaimie coaches traditional Japanese jujitsu for children and adults, with a number of his students being neurodivergent. He also enjoys binge watching TV series and playing Minecraft and Pokémon.

References

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DOI: 10.5014/ajot.2012.000604

Taylor, J. A.E., & Taylor, J.A. (2013). Person-centered planning: evidence-based practice, challenges, and potential for the 21st Century, Journal of Social Work in Disability and Rehabilitation, 12 (3), 213- 235,
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Williams, D. (1996). Autism. An inside-out approach. London: Jessica Kingsley Publishers.
Leadbitter, K., Buckle, K. L., Ellis, C., & Dekker, M. (2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers in Psychology, 12, 635690.
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Kwok, E.Y., Brown, H.M., Smyth, R.E., & Cardy, J.O. (2015). Meta-analysis of receptive and expressive language skills in autism spectrum disorder. Research in Autism Spectrum Disorders, 9, 202-222.
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Kamio, Y., & Toichi, M. (2000). Dual access to semantics in autism: Is pictorial access superior to verbal access? Journal of Child Psychology and Psychiatry, 41(7), 859-867,
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Rodger S, O’Keefe A, Cook M, Jones J. Parents’ and service providers’ perceptions of the Family Goal Setting Tool: A pilot study. J Appl Res Intellect Disabil. 2012;25(4):360-371.
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Ashburner, J., Tomkins, V., Bobir, N., Jones, J., Smith, D., Hautsalo, J., & Swift, E. (2023). Co-design and co-production of a goal setting tool for autistic adolescents and adults. Autism in Adulthood, 5(1), 37-50.
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Müller, E., Schuler, A., & Yates, G. B. (2008). Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism, 12(2), 173-190.
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