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Full article: shorturl.at/bdrG5

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Nothing about us without us
Who: Ridout
Where: Qualitative Research Journal
Published: 2017
Title: The Autistic Voice and Creative Methodologies

Becoming Vulnerable to New Ways of Knowing

This paper wanted to recognise communication as a challenge between autistic and non-autistic people, and that the autistic voice is not silent, but lacks involvement at any level beyond that of the observed participant.

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How do mixed expressive media enable autistic adults to voice their feelings and thoughts about themselves and their future?
How do the narratives of autistic adults inform us about their identity and well-being?
In what context(s) are these narratives taking place, and how is power situated within this?

Autistic voices must be placed as the expert insider voice. They are frequently overlooked by researchers, practitioners, and service providers, despite their value in providing information for services, policies, and practices.

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The assumption that there is a general understanding of what it means to be autistic is stigmatising and has devastating impacts on autistic peoples wellbeing.

True engagement means listening to what an individual has to say about themselves, the real identities that they wish to be recognised, and the skills they have to offer or would like to develop. Research, therefore, should be transparent to allow readers to understand the diverse interpretations available. This includes being clear about what the researcher brings to the process.

Having an agenda which is skewed to non-autistic people means that the wrong conversations are being had from the very beginning.

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This study explored three case studies. The researcher’s epistemological position reflected neurodivergence and was one of insider-curious outsider. Through the exploration of these case studies, the focus was to develop a methodology which would acknowledge the priorities of the expert insider voice (autistic people) and facilitate an exploration of their priorities.

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For example, in the area of well-being, it seems that the autistic agenda is more nuanced and less prescriptive than that expressed by outsiders.

The questionnaire method which is typically used to explore autistic well being is not always the preferred method of communication for autistic people to discuss their well being (unless the questionnaire was informed by autistic people in the first place).

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Questionnaires & interviews also often use language which is considered offensive or does not reflect the identity of autistic individuals, which can discourage people from engaging in research as they feel misunderstood from the beginning. Ownership of terminology used to describe oneself has a profound effect on well-being.

Research has shown that terminology needs to reflect individuality, changes, and priorities over the lifespan. Clarification of terminology is crucial from the outset in order to avoid confusion.

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The methods used in this research were informed by autistic people. This was to create an enabling environment which recognised challenges and preferences.

Ne’eman (2010) suggested that the agenda on autism is being steered away from the priorities of autistic people. This study showed that the autistic agenda is present to be accessed. Until autistic people are involved in policy making, at all levels of research, and in the prioritising & delivery of training, this situation is unlikely to change.

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Context is essential for understanding, so it is essential to contextualise the experiences of autistic people. It is also important to reflect on the location of power within narratives, as autistic people often speak to a different agenda than non-autistic people do.

Autistic experiences are frequently misunderstood as a direct result of being decontextualised, which leads to individuals being unable to engage with services or contribute their skills to society.

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This study emphasised the difference between autistic and non-autistic people as difference and not as disorder. This allows for the causes of anxiety to be considered & addressed in the context of real life experiences & the real triggers of stress.

Unlike non-autistic narratives of autistic experiences, the autistic narratives did not focus on employment or independent living, but on their successes, failures, plans, dreams, skills, challenges, and achievements.

Understanding the autistic voice in a context that is not tokenistic is paramount to meaningful engagement.

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This study underwent a number of explorations of methodology and autistic participants preferences and needs with respect to this. It utilised a flexible methodology which included mixed media, which readily taps into the communication preferences of the individuals involved.

During this exploration, a number of themes arose. These were expectations of a support group, feelings around support, and the presentation of skills & interests which could be utilised with attention paid to communication preferences.

The author argues that scanty resources are being wasted by developing new tools & introducing them ineffectively; change is required.

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There were two methods offered to the participants to explore their experiences of autism; a diary & a collage.

They were able to engage & disengage at will, and were able to produce “incomplete” data if preferred. There was continuous discourse throughout these processes.

The participants allowed themselves to be vulnerable to new ways of knowing. While their stories may not be generalisable, they are worthy of inclusion in the wider autism narrative. They may encourage non-autistic people to also make themselves vulnerable to new ways of knowing.

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Collage produced by participant 1.

[Image of a collage reading: Things I would expect from a support group. The rest is too blurred to read; there was not a higher resolution image available with this paper.]

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Collage produced by participant 2.

[Image of a collage reading: I have Asperger Syndrome. Support we need it. Confidence –> love who you are. Worrying –> comfort. Change –> good future. Problems –> best friends + instant relief. There’s more than one of you.]

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Written list produced by participant 3.

[Hand written list reading: Communication
One thing at a time
No questions
Small groups
Learning [illegible]
Rules and strategies make things work.
A second piece of paper reads:
Cricket –> [illegible] practical
Mountain climbing
Small group activities.]

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The images produced by participants 1 & 2 and the list produced by participant 3 were not analysed; they were allowed to speak for themselves. It was essential to endeavour to be transparent in the range of possible interpretations.

Throughout the narratives of the three participants was the message that living with anxiety does not mean that one is unable to engage with others, live independently, or that one has no skills to benefit society.

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Autistic people are saying loudly that they want to be involved with informing and shaping services, and arguably should be leading these discussions. There is no excuse for this not to happen.

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This research has pointed to several key areas for change, including;

Needs Assessments such as for the Personal Independence Payment are generally a standard interview, showing no awareness of change over time. Participant 3’s narrative text shows that these assessments should be carried out over several sessions, utilising flexible methods which can be adapted to communication preferences. This would allow an individual to reflect on and process information. Also, these processes have inflexible timescales, meaning that individuals may be unable to access funding, courses, housing, employment, etc. There is a need here for flexible methodology.

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The relationship between the assessor and the autistic person should be on the autistic persons terms. Otherwise, the context & power of this situation will negatively impact the autistic individual & their ability to engage with an assessment or service.

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Economics also greatly impacts autistic peoples ability to engage with the processes of informing and shaping provisions.

As autistic people face discrimination at every stage of the employment process, many are dependent on benefits, which prevents them from traveling to conference venues or from paying conference attendance fees.

Society will continue to fail to acknowledge the potential contributions of autistic people when their identities are constantly set against a backdrop of dysfunction.

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Autistic individuals are diverse, just as non-autistic people are, and the views expressed in this study reflected neurodiversity – embracing skills, expectations, communication differences/preferences and a whole range of feelings, but with anxiety prioritised. Adjustments to environments that are better suited to all may well assist in reducing anxiety in the workplace, make better use of resources, and embrace shared neurodiversity.