Guidelines for future autism research

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From the perspective of the autism rights movement ownership of the definition of autism is a practical question of human rights and social power relationships in the here and now, and not an abstract philosophical problem.

Across the board most autistic people recognise the disabling characteristics of autism, which are socially constructed, exactly in the same way that left-handedness, female sex, or atypical gender identity used to be significantly disabling characteristics in our society.

Toxic social power relationships and bullying in society and in the workplace arise out of the pathologisation of autism and other neurological variants that influence the ability to conform to local cultural expectations in one or more areas of social behaviour.

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Here are two concrete examples of how social power relationships in relation to neurodiversity currently play out within academic research organisations:

  1. “There is no staff member in our organisation who is interested in participating in an active role in the context of celebrating and de-pathologising neurodiversity”
  2. When asking about a safe space (a time slot and small venue) that allows neurodivergent people to meet, I was informed that “the organisation has already settled on five priority areas of diversity and that the organisation does not want to add any more [support]”

In order to be of value to the autistic community, and in order not to further endorse and perpetuate the use of the pathology paradigm by researchers, it is essential that future autism research builds on the communal definition of autism and takes care to use non-pathologising language in all resulting publications.

The Autistic Collaboration community curates autistic perspectives and links to research that is deemed relevant from the perspective of the autistic community. The links between neurodiversity and creativity and the mental health implications of systematic discrimination and pathologisation are of particular interest.

This article is a sad reminder of the mainstream culture we often find ourselves in. This culture is the inevitable result of pathologising autism and other neurological variants; it makes invalid and highly toxic assumptions about human nature that become self-fulfilling prophecies:

Let’s begin with two principles:

  1. People are status-seeking monkeys
  2. People seek out the most efficient path to maximizing social capital

I begin with these two observations of human nature because few would dispute them …

I can’t comprehend how anyone wants to live in this kind of world. I would like to see research that explores how “status-seeking monkeys” can unlearn some of their assumptions about human nature and become more aware of their cultural programming.

From an ethical perspective, the following guidelines should be mandatory for all future autism research:

Non-pathologising language

Autism is a very broad umbrella term for a multi-dimensional set of traits. In our current society both autistic people with more complex support needs as well as those with less complex support needs suffer from discrimination.

  • A pathologising label such as “Low Functioning Autism” negates and belittles the capabilities of a group of people, simply because they are non-verbal (here is a good example) or learning disabled.
  • A pathologising label such as “High Functioning Autism” negates and belittles the support needs of a group of people, simply because they are verbal and not learning disabled. Bullying and autistic suicide statistics are a strong indicator of a lack of support that actually meets the needs of autistic people.

The rationale for using non-pathologising language is straight forward. It is the same rationale that prompts left-handed people, women, the LGBTQIA communities etc. to rightfully demand the use of non-pathologising language. In case non-pathologising language leads to concerns about the ability to publish in influential journals, then the problem clearly lies with the journals and not with the research and the language used.

My work involves the diligent use of language and formal semantic models. I am acutely aware of the power and the limits of language in the context of knowledge transfer, and the role of language in the context of power politics and deception. Our company is not going to be involved in any research that uses pathologising language to describe autism.

The use of pathologising language is fine in relation to physical or mental ailments where a person wishes for a cure or amelioration that is focused on their own body and mind. The use of pathologising language is inappropriate for physical or mental ailments that are caused by the environment.

If someone experiences pain in their foot because I stand on their foot, the person does not have a foot pathology but their environment is a source of pain that needs to be addressed. If an autistic person experiences mental and emotional pain due to sensory overload or due to cultural demands for conformance with culture specific arbitrary rituals (eye contact is a great example of a cultural ritual that is painful or stressful for many autistic people, and small talk can be similarly stressful), the person does not have a mental disorder but their environment (including cultural expectations) is a source of pain that needs to be addressed.

There is no doubt that many autistic people (just like non-autistic people) have ailments that are experienced as a disease or disorder, which people would prefer not to have. People do not enjoy having epileptic seizures, migraines, asthma, and many other ailments. All of these health conditions have formal labels that describe related symptoms. None of these health conditions are unique to autistic people, even though some autistic people have some of these co-concurrent conditions more frequently than other people.

Resorting to pathologising language in autism related research that focuses on autistic cognition but not on co-concurrent health conditions amounts to systematic discrimination.

Autism related research that investigates co-concurrent health conditions in the context of autism may use pathologising language in relation to the co-concurrent health conditions, but not in relation to autism.

Social power relationships

Social power relationships are not an intrinsic feature of all societies, even though they are part of all societies that consider themselves (considered in the case of historic societies that have collapsed) to be “civilised”.

We live in times where the very foundations of civilisation have become a major problem. Even non-autistic people are starting to realise that power relationships are a major root cause in this context. Human social behaviour across all levels of scale can not be understood through the lens of any single discipline. The research of Herbert Gintis is an excellent starting point.

Cultural evolution is a topic that “culturally well adapted” (non-autistic) people are ill equipped to discuss, as cultural bias easily creates significant blind spots. A culture without neurodiversity and without an adequate distribution of autistic traits is unable to evolve.

Humans have become more successful than other primates not because we are better at constructing social power hierarchies but because we have recognised the danger of the collective learning disabilities induced by all social power relationships. This allowed pre-civilised humans to collaborate very effectively and to reproduce and more successfully than other primates.

The era of human civilisations and anthropocentrism is a little detour or temporary disruption in the evolution of life on this planet.

It is the role of science to apply a critical lens to our understanding of the world, and in the case of human researchers this means being cognisant of the potential for cultural bias to induce culture-specific implicit assumptions when framing research objectives and when attempting to analyse the social world.

Disability

In the context of autism co-concurrent health conditions – rather than autistic cognition – can be disabling.

Most importantly however, for all autistic people the cultural environment and cultural expectations in most societies are disabling to some extent (see the social model of disability).

This article by Robert Chapman provides serious food for thought on the origins of the pathologisation of autism.

Ethical research objectives

Since autism is not a pathology, research objectives must not include:

  1. The search for a cure for autism
  2. Genetic tests that screen for traits that are common in autistic people, with a view of reducing the prevalence or strength of these traits
  3. Therapies for autistic people that focus primarily on changing the behaviour of autistic people, rather than assisting autistic people to shape their environment in accordance with their unique individual needs

Instead, given the shocking historic track record of autism research and therapies, all autism related research must be subject to ethical approval by a board of autistic people, and must consider the needs of all autistic people, including autistic adults.

It is time to significantly raise the ethical bar for autism research.

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The initiative below illustrates the beginning of a new era of autism research.

The Participatory Autism Research Collective

The Participatory Autism Research Collective (PARC) was set up to bring autistic people, including scholars and activists, together with early career researchers and practitioners who work with autistic people. Our aim is to build a community network where those who wish to see more significant involvement of autistic people in autism research can share knowledge and expertise.

PARC are following in the footsteps of previous autistic-led projects, such as the Autonomy Journal and the Theorising Autism Project, who have been campaigning for more participatory autism research.

The project was initially based at London South Bank University, where PARC has held a number of events, contributed to research projects and to publications. The group is has since expand activities to other Universities such as Birmingham, Sheffield Hallam and Nottingham.

The Neurodiversity Reader – Call for Submissions
Twenty years on – tracing the influence of the neurodiversity movement on theory and practice.

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