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Full article: https://www.tandfonline.com/doi/pdf/10.1080/21582041.2021.1998589

AccessibleAcademia

Nothing about us without us
Who: Grant & Kara
Where: Contemporary Social Science
Published: 2021
Title: Considering the Autistic advantage in qualitative research: the strengths of Autistic researchers

The Autistic Advantage

This paper, written by two Autistic researchers, outlines the strengths & benefits of Autistic researchers, and provides recommendations for employers to support Autistic employees.

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The authors of this paper are late-diagnosed autistic women who are professional qualitative researchers. They adopt the approaches of Feminist Disability Studies and Critical Autism Studies to critically consider the advantages of autistic researchers to qualitative research teams.

Intersectionality matters, and race is often neglected within Disability studies. Both authors acknowledge the privilege of their whiteness.

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Disability & Research

Disability is a complex field; this section draws heavily on the work of Disabled academic, ethicist, and Disability rights activist Tom Shakespeare.

The phrase “Disabled people” implies homogeneity, but there is a huge diversity of impairment & experience among disabled people, much of which can be dynamic, changing over time or with environment. Disabled people may have more than one form of impairment.

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Many people reject the term “impairment”, and focus on the conceptualisation of “difference”. The social model was developed as a reaction to the medical model of impairment, and views society as that which disables people through inaccessible environments and inflexible institutions. These are factors which can and should be changed.

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The social model has enabled a shift in thinking which has led to more understanding & protection of Disabled people’s rights.

However, the binary distinction between social & medical doesn’t reflect real-world complexity.

Shakespeare argues for the bio-psycho-social model, which states that Disability is not caused by oppression alone, but is multi-factorial, & includes physical, psychological, and social factors.

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At the end of the 20th century, activists developed “emancipatory research” which questions who controls the resources & conduct of research, and how research can be used to benefit marginalised groups.

“Inclusive research” is research which recognises that research may be “conducted by, with, and for people with learning disabilities”, as a direct contrast to research which is conducted on Disabled people.

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This research recognises the importance of understanding Disability from the viewpoint of Disabled people.

Intersectional approaches aims to accept & reflect the complexity of human identity within its research design & conduct.

However, Disabled people are still predominantly seen as the subject of research & not as researchers. Even citizen science is overwhelmingly conducted by highly educated white middle-class men. Disabled people are sometimes involved in Disability research, but often in tokenistic ways. Disabled people are rarely recognised as playing a useful role in research.

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Neurodiversity & Research

About a quarter of people are neurodivergent. Neurodivergence is not a single unified experience.

A range of diagnostic labels, such as Autism, Attention Deficit Hyperactivity Disorder, dyslexia, and dyspraxia, have been given to groups of people with neurodivergent characteristics by doctors & psychologists.

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These diagnoses are based upon deviation from neurotypical thoughts & behaviours.

Autistic people often learn to “mask” in order to navigate a neurotypical world & reduce negative outcomes of interaction. This applies particularly to those who are not diagnosed in childhood, especially girls, women, and non-binary people, as the diagnostic criteria is skewed in favour of boys & men.

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It is unsurprising, due to the barriers they face, that Autistic people experience worse outcomes than neurotypical people when it comes to health, education, employment, and criminal justice.

From its beginnings in Nazi Vienna, neurodiversity research was the privilege of neurotypical academics and was often linked to eugenics.

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Hans Asperger, after whom Asperger’s Syndrome is named, identified a group of “Autistic psychopaths” and contributed to their ethnic cleansing whilst claiming he was helping Autistic people.

The first time Autistic people were considered experts of their neurology was probably in 1986, although this work by “high functioning” Autistic people carried many ableist assumptions & contributed to the subjugation of Autistic people.

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The use of “functioning labels” such as “high functioning”, “low functioning”, or “Asperger’s syndrome”, as opposed to Autism, has been identified as harmful to all Autistic people.

“Autistic” is now the recognised diagnostic label and is preferred by many in the Autistic community.

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Even in the 21st century, research is frequently on Autistic people, not with or by them, and the research is situated within functional philosophy which fails to account for lived realities.

A few neurotypical allies have conducted research with Autistic people, and in the US there are now guidelines to ensure Autistic co-researchers are included equitably, including fair compensation, effective communication and power-sharing techniques, and collaborative dissemination.

However, it is clear that Autistic participants do not feel adequately included in research, sometimes feeling like a “guinea pig”.

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Inclusive research does exist, usually as the product of Autistic doctoral researchers. The experiences of Autistic people as researchers on Autistic experience is being increasingly recognised as valuable.

Also, Critical Autism Studies sometimes recognises itself as epistemologically separate from research conducted by neurotypical researchers, through its use of emancipatory philosophy.

The neurodiversity movement has also gained traction, including a major UK political party producing a Neurodiversity Manifesto. The next step is for neurodivergent & neurotypical researchers to work together inclusively.

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Autism & Work

Autistic people struggle to find & keep jobs which are created by & for neurotypical people. The employment rate for Autistic people is not only lower than that of neurotypical people, it is also lower than that of Disabled people in general.

In the UK in 2021, of those ages 16-64 years, 81% of neurotypical people are employed, compared to 52% of Disabled people, and 22% of Autistic people.

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This is a problem, as work is not only a way to make a living, but also leads to increase independence, higher self-esteem & social status, and community inclusion.

Some places are showing good practice in meeting the needs of Autistic employees.

Research has shown that Autistic employees bring benefits to their work environments, such as creativity, innovating thinking, and diligent, productive, consistent working habits.

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Autistic employees also offer insights into the needs of neurodivergent clients, suppliers, or staff from partner organisations.

There are four recommendations for supporting Autistic employees to flourish:
1) Make expectations clear, use clear language, & make any offer sincere
2) Treat everyone as a unique individual
3) Provide training to staff on working with Autistic colleagues
4) Find a neutral person who can act as a source of advice to everyone and, when necessary, a mediator

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“The Autistic Advantage”

Most Autism research is deficit-based, as defined by people in power.

More recently, there has been more asset-based research, focusing on strengths and contributions first and then on any difficulties which may merit further investigation.

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Autistic people have stronger than neurotypical abilities in relation to focus on tasks, attention to detail, memory, and creativity.

“Attention tunnelling” is known as hyperfocus or monotropism, and is the ability to focus heavily on one task instead of lightly on several tasks. Hyperfocus gives Autistic people intense focus, attention to detail, and high levels of productivity which are valuable in the employment sector.

There are further Autistic advantages, including hyper-plasticity, direct communication, loyalty, and empathy.

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Considering the Autistic Advantage in Qualitative Research: A Tale of Two Autistic Researchers

Aimee

Aimee was diagnosed as Autistic in 2019 at the age of 37. She had been a qualitative researcher for over 10 years at this point. Within her research, she often considers lived experience of health & Disability, and why interventions to promote health do or do not work.

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She has a longstanding interest in social justice & inequality, stemming from childhood. Recently, her research has focused on marginalised people, and she feels confident to speak out against doing research on marginalised people instead of with them. She has withdrawn her labour from projects which fail to treat participants as human.

She has strong attention to detail and her work involves meticulous planning. She also utilises her hyperfocus in her work.

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She describes herself as having a “shiny magpie brain”, which may contain elements of ADHD, meaning she always has her mind on new and exciting projects. This also means that she can leave papers half-written for months or years. For example, the paper for her PhD, which she completed in 2011, is something she still returns to periodically and she is sure she will finish it one day.

At the time of writing, Aimee had just submitted a book manuscript, and has nine partly completed written papers to attend to.

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Aimee uses significant creativity within her approach to research, often bridging the divide between ontologies & disciplines. She considers herself a methodological & paradigmatical chameleon. Her masking abilities means she is able to adapt to whichever approach is being used by others, with a primary focus on increasing social justice through research, rather than epistemological or methodological purism.

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Helen

Helen was diagnosed as Autistic in 2021 at the age of 56. She had been an independent qualitative & multi-modal researcher for over 20 years.

Having maintained a business for over 20 years shows her skills in self-discipline & networking. She is an excellent writer, as words & languages are a lifelong special interest of hers.

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She is a fast thinker, and enjoys working in collaboration with those who are slower, deeper thinkers. She is a direct communicator and believes this is effective as it leaves less room for misunderstanding.

She is very good at concentrating, often dedicating a whole day to coding or writing, and can get a lot done in a short space of time.

She is good at identifying gaps, links, and patterns, which is very useful in qualitative research. She is willing & able to outline her own position on an issue, and to change her views when presented with persuasive evidence.

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Plans make her feel secure, and she is able to review plans and act flexibly when needed.

However, she struggles to switch tasks, file papers, keep accounts, and in keeping her workspace tidy. However, given her strengths, qualitative research & scholarship suits her. There is a pleasing balance of creativity & regularity, and she can both work alone & collaboratively.

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Discussion

Both authors have similarities & differences. They are brought together by the fact they acquired a diagnosis of lifelong disability in adulthood. This undermines the idea that disabilities are either lifelong or acquired; they can be both.

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All people have strengths & weaknesses. However, the authors invite you to consider the idea that what is considered a weakness by some neurotypical researchers can also be considered a strength.

For example, a person who prefers to continue coding over their lunchbreak could be considered irritatingly antisocial, or usefully productive. An insistence on precision in data entry can be seen as nit-picking or as ensuring quality.

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The Autistic advantage has some specific applications for qualitative research work, including hyperfocus and “flow”, attention to detail, creativity of thought, empathy, and loyalty.

This advantage is dependent upon the social context & the individuals ability to cope in that context. For example, Aimee has been told “we can’t afford this”, and had her reasonable adjustments (as prescribed for her by Access to Work, a UK Government initiative to keep disabled people in work) removed. She has excelled under managers who communicate clearly and criticised by managers who do not.

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An accessible environment means that Disabled people can spend their time and energy on their work, rather than on trying to navigate inaccessible workplaces.

In July 2021, the UK Government published a five-year national Autism strategy. One chapter of this is about supporting Autistic people into employment. It is light on advice about how to do this, and so the authors have provided a list of recommendations.

It is important to recognise everyone’s uniqueness and that their differing needs will require different adjustments.

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Creating Employment Conditions for the Autistic Advantage to Flourish

• Before any ‘problem’ is identified, ask about needs relating to communication and sensory issues, and meet them where possible
• Use direct communication
• Supplement verbal communication with written, for example, circulate an agenda prior to meeting
• Treat the individuals’ report of disabling symptoms seriously, even if you do not find those symptoms to be typical based on your knowledge
• If you are a manager of a Disabled person, it is usually your responsibility to advocate for the adjustments they require
• Remember, Disabled and neurodivergent people are a heterogeneous group

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• It is essential for managers of Autistic staff to consider the views and requests of the individual Autistic person working for them; this is something that absolutely is not ‘one size fits all’.
• Requests made by an Autistic person may sometimes feel like a thing that is ‘nice to have’ to a neurotypical person, but they are likely to be truly necessary for an Autistic person to work to the best of their ability
• Be sensitive to data protection laws; never share details of Disabilities without permission
• Flexibility is also beneficial; what a Disabled person can do on one day, they may not be able to do on another day; we Disabled people are the experts on our energy levels and fatigue
• If adjustments are removed, or not working properly, Disabled people are likely to be less productive, or to use more energy to compensate, putting us at risk of ‘burnout’

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• Identifying and implementing adjustments may take effort, but will increase productivity
  o Disability policies may be rooted in ableism, and may not account for neurodivergence
  o Within universities, not all Disability Services are open to staff, but in our experience they are generally open to graduate students
  o Occupational Health staff are unlikely to be expert in neurodivergence
  o There are experts in neurodivergence who are able to provide bespoke work-place assessments
  o In the UK, students (including graduate students) are eligible for financial support to fund adjustments through Disabled Students Allowance
  o In the UK, Access to Work assessments and support are available to those with a diagnosed Disability (including Autism, Dyslexia and other forms of neurodivergence)

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Conclusion

“Expecting everyone to fit right into a pre-existing work environment, and rub along happily and productively together, is an ableist approach. Working in diverse teams is challenging; however, including different perspectives can create opportunities for new learning and understanding. We have argued here that Autistic researchers have a number of strengths to bring to a qualitative research project or team. To facilitate this, we have given some pointers about how to include one or more Autistic researchers. We hope this will serve as a stepping-stone towards greater workplace equality and increased job satisfaction for everyone.”