To improve the mental health of adolescents with autism, we must first understand their lived experience

Have you ever tried to have a conversation with an adolescent with autism and a mild intellectual disability? Given how common autism is, it is likely that you have, but you may not have realised it.

Although potentially 1 in 70 individuals have autism, it is often considered an invisible disability. Typically-developing adolescents are famously uncommunicative with adults. You may interpret the grunts, lack of eye contact and one-word responses as typical of adolescence. In fact, difficulties with social communication, including comprehension and social anxiety, are core features of autism. Imagine then the challenge of attempting to engage this population in a focus group, especially one that involves emotions and mental health.

Adolescence is often a challenging time, however, experiencing significant mental health problems is the reality for a staggering 70% of adolescents with autism and intellectual disability (ID). Not being able to include the voice of this population in research, has meant that researchers and clinicians have been unable to truly understand the complex challenges these young people face. Moreover, there are no evidence-based targeted interventions aimed at promoting mental health and wellbeing in this vulnerable population. Until now.

The qualitative research barriers in autism

Qualitative research relies on people’s words or stories to gain an in-depth understanding of the human experience and the social world. This research approach has been recognised as important in understanding which questions researchers need to be asking, and for informing the development of targeted mental health interventions. Commonly it includes in-depth interviews or focus groups with research participants with a particular lived experience.

 The communication difficulties inherent in adolescents with autism and ID present a unique barrier for researchers. This has resulted in a large gap in our collective understanding with regards to exploring the lived experience of adolescents with autism and ID. Qualitative researchers argue that both the reality of the world and the lived subjective experience of the world should be explored. But researchers are often left to assume that it is too difficult to conduct this well-established type of research with this population.

Leading the way with the first specifically adapted focus group

A newly established partnership between The Children’s Hospital Westmead and Western Sydney University is currently investigating the emotional experience of adolescents with autism and mild ID. Our team, which draws from years of clinical experience, has successfully developed a world-first focus group method to authentically engage with adolescents with autism and mild ID.

One of goals is to challenge the myth that individuals on the spectrum prefer to avoid group settings. Following the guidelines provided by the Cooperative Research Centre for Living with Autism (AutismCRC), the world’s first national cooperative research centre focused on autism, the focus group model includes well-established autism friendly positive support strategies, such as a visual breakdown of the session and a story to describe the experience of being in a focus group. The participants (aged 14-15) quickly relaxed into the focus group.

Individuals with autism are known to be visual learners. The focus group incorporated this strength by including photos and videos as well as providing participants with question and answer booklets. Flexibility in how participants responded was also important. Participants were encouraged to respond to questions either verbally, in writing or by drawing their answers, whichever they preferred. Taking a flexible approach and using both quantitative and qualitative methods allowed for the facilitator to provide structured teaching while also assisting the participants with the comprehension of questions.

New developments in supporting social-emotional needs and mental health

The preliminary results from our focus group have raised important issues. Most studies rely on parents answering questions on the adolescent’s behalf. The commonly held belief is that parent knows the child well and can provide more accurate information than the child with autism.

One of the key findings from our focus group is that parents of adolescents with autism and mild ID may not be aware that their child has a broad emotional experience, which includes feelings of depression and social isolation. Parents may not realise how many events can elicit a negative emotional experience for their child. Finally, parents may not be teaching their child how to manage their emotions, therefore reducing the opportunity for their child to gain ownership of their emotions.

Social-emotional skills are recognised as part of the personal and social capabilities embedded in the Australian Curriculum. The roll out of the National Disability Insurance Scheme (NDIS) has increased demand for interventions to support the skills development of people with a disability. Yet, currently there are no evidence-based emotion-focused intervention programs for this population. Results from this focus group study therefore have important implications for developing targeted interventions in the future.

For over 70 years researchers and clinicians have been exploring autism. Yet, it is only now that we have developed a focus group approach that captures the voices of adolescents with autism and ID. We have learnt so much from one small explorative study. Sharing this approach with others will reduce the barriers in conducting qualitative research with not just adolescents with autism and ID, but with many marginalised groups of people with a range of disabilities. Voices which until now, have been silent in research.

One Reply to “To improve the mental health of adolescents with autism, we must first understand their lived experience”

  1. What a positive approach and necessary key issue to resolve. Can’t wait to hear what the team finds out so that I can use the knowledge to support students in school.

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