“Living Independently Means Everything to Me”: The Voice of Australian Autistic Adults

Abstract

Background:

Despite the desire of many autistic adults to live independently, recent studies suggest that only about one in six autistic adults do. This includes living alone, with a partner, or with friends. This is a rate that is lower than adults with other disabilities. Existing studies from other countries have explored the potential barriers to independent living, with very few exploring the actual experiences of autistic adults. To the best of our knowledge, there have been no published studies exploring the firsthand moving out experiences of autistic adults globally and none that have explored their independent living experiences in Australia.

Methods:

Autistic adults with independent living experience in Australia were invited to partake in an interview to understand their moving out and independent living experiences. Interviews were held virtually, audio recorded, and transcribed. Transcriptions were coded in NVivo and thematically analyzed.

Results:

A total of 11 autistic adults were interviewed (aged 21–50 years). Three key themes were derived from the interviews. Autistic adults perceived independent living as important to have their own space with added autonomy and control (Theme 1). However, autistic adults shared that the moving out process and independent living comes with many challenges, and currently supports are limited (Theme 2). Nine of the 11 participants were diagnosed as adults, and they shared the importance of diagnosis and how an earlier diagnosis may have influenced their choice of accommodation and living arrangements (Theme 3).

Conclusions:

Findings from this study reiterate the importance of independent living to autistic adults and shed light on the challenges of transitioning to independent living. It further adds to the growing literature about the importance of early diagnosis on later life choices. Better pathways toward adult diagnosis and the provision of supports for the moving out process would be useful to ease transition to independent living for autistic adults.

Community brief

Why is this an important issue?

Many autistic youth and adults say that they want to live on their own, with friends, or with a partner. However, many still live with their family. Most of the research in this area talks about what autistic people and their parents think might happen when they move out of home. Yet there is not much that has explored the experiences of autistic adults who have moved out already to live independently, and none within Australia. This is important, as we need to understand their experiences so we can make them better.

What was the purpose of this study?

The researchers wanted to understand the moving out and independent living experiences from autistic adults in Australia.

What did the researchers do?

A researcher conducted 11, one-on-one interviews with autistic adults living independently in Australia. These interviews were online or over the phone depending on what participants wanted, and ranged from ∼27 to 105 minutes. Autistic adults were asked questions about when they moved out and their current independent living experiences.

What were the results of the study?

We looked at what participants told us and created three ideas that described the independent living experiences of autistic adults in Australia. These ideas included how the control/choice/freedom/space are important, that some parts are hard, and that people may have made different living decisions if they were diagnosed at a younger age.

What do these findings add to what was already known?

These findings help show how important it is to the autistic community to live independently and that the challenges in Australia are similar to other countries. Our findings also suggest that if people realized that they were autistic earlier in their lives, they may have better understood themselves and followed living situations that better suited their needs.

What are potential weaknesses in the study?

This was quite a small group of autistic adults, where the majority identified as female and were highly educated.

How will these findings help autistic adults now or in the future?

By better understanding the moving out and independent living experiences of autistic adults in Australia, these findings can help identify areas of support (such as finding a good home and help with money). It also provides further support to improve the diagnostic processes for autistic adults, as diagnosis can help adults better understand themselves and find homes suited to them.