In Part 1, I identified a number of recurring needs within research into autistic adults and air travel, including predictability, clear information, sensory control, choice, navigation support and autonomy. However, the research also showed that these needs are not necessarily experienced in the same way by every autistic person. For example, the PATHS research found that while some autistic passengers preferred to board an aircraft first, others preferred to board last. This raised an important question for my project: if autistic adults have different support needs, what level of need am I actually designing for?
The National Autistic Society describes autism as a spectrum where people can have significantly different support needs. Importantly, the spectrum should not be understood as a simple linear scale from “less” to “more” autistic. Instead, the organisation refers to the idea of a “spiky profile”, where an autistic person may have significant strengths in one area while requiring substantial support in another. The NHS similarly states that every autistic person is different and that the support an autistic adult requires may change over time and across different situations.
This feels particularly relevant when thinking about independent international travel. Someone may be completely capable of planning and navigating most of a journey alone while experiencing significant difficulty with a particular part, such as communicating with staff, processing an unexpected change or managing sensory overload. This suggests that defining somebody simply as either “independent” or “requiring support” may not accurately represent their experience.
National Autistic Society — Varying Support Needs
NHS — Autism and Everyday Life
This led me to Experiencing Independence: Perspectives from Autistic Adults by Bhattacharya et al. The study is particularly relevant because it focuses specifically on how autistic adults themselves conceptualise and experience independence, rather than beginning with a predetermined neurotypical definition.
The authors explain that independence has traditionally been understood through neurotypical expectations, often focusing on functional abilities and whether somebody can complete everyday activities without assistance. However, their findings suggest that autistic adults’ experiences of independence are more complex. Participants placed significant value on being able to make choices and exert control, and the researchers emphasise the importance of distinguishing between “independence” and “independent living”. Although the concepts are related, they are not synonymous.
The study also identified the considerable effort some autistic adults put into maintaining conventionally defined independence. Participants described strategies such as scripting social interactions in advance, camouflaging autistic traits and adapting themselves to fit non-autistic expectations. The authors therefore argue that autistic people should have opportunities to achieve their desired level of independence without compromising their autistic identity, natural communication style or wellbeing.
This changes how I think about the term “independent autistic traveller”. Independence does not necessarily have to describe someone who completes an entire journey without assistance. Instead, it could describe someone who maintains choice and control over their journey, including control over whether and when assistance is used.
Read Experiencing Independence: Perspectives from Autistic Adults
I then looked at Thompson-Hodgetts et al.’s research into self-determination among autistic adults. The researchers wanted to understand what self-determination means from autistic adults’ own perspectives, what prevents it and how autistic people would like to be supported to achieve it.
Their findings further challenge the idea that receiving support and being independent are opposites. Autistic adults wanted to be self-determined and could flourish with support when they considered that support appropriate. Importantly, the type of support autistic participants wanted did not necessarily resemble the support typically sought or offered by non-autistic people. The researchers therefore emphasise individualised support alongside the wider need for environments and societies that respect neurodivergence rather than expecting autistic people to conform to neurotypical standards.
For my research, the important distinction is therefore not simply whether support exists, but who controls it. Support that is imposed could potentially reduce autonomy, whereas support that an autistic traveller can choose, personalise or access when required could enable greater independence.
Read Toward Understanding and Enhancing Self-Determination
One of the questions raised during my tutorial was “What level of need are you designing for?” Initially, I considered whether this might mean identifying two or three different levels of support need. However, this research suggests that categorising independent autistic travellers simply as having low, medium or high needs could oversimplify their experiences.