Is Being Othered a Co-Occurring Condition of Autism?

I am not grateful for autism research. I used to think it was the key to improving autistic lives, so with self-interest gleaming in my eyes, I threw myself into participatory research. I contributed whenever invited and often, uninvited.

Disenchantment was slow in coming. At first, all I knew was that it may be uncomfortable, but that I should be grateful to be included, so I did the autistic usual; I masked and bore it. Gradually, I began to define what was making me fidget and started objecting out loud, to attitudes and language I found demeaning or paternalistic.

I had never heard the verb “othering.” Then one day a senior academic, who I had been working with for several years, asked me to participate in his talk. I stood on the stage as I was introduced to the packed conference: “This is Cos, an autistic adult.” So there I was, a woman in late middle age, fully equipped with white hair and breasts; yet apparently this needed stating, out loud, to my face, in front of an audience. I was being shown off as a specimen and I was mortified. Nobody else was introduced as an adult, as people are assumed to be adults, unless they are children. Remember those Victorian etchings of public lectures, with all the toffs in starched collars and monocles and the solitary wild haired, drug eyed mute, led on in a canvas shift? Yup—it felt just like that.

This prompted me to begin questioning the respect and sincerity of the nonautistic research community toward autistic research participants. Were we there because they valued our input, or were we tokens, useful for “authenticity” and snippety quotes, to validate the researcher's inclusive credentials?

From that point onward, I articulated how I felt, challenged established notions, refused to have my autistic experience explained down to me. The invitations to speak at professional conferences diminished: autistic people can be such loose cannons after all. I was no longer a safe and reliable mouthpiece: I was Cos, a rebellious autistic adult. An unstable specimen threat to the status quo.

So now I am going to get shouty about one of the most alienating aspects of autism research: othering by the commoditization of our brains. Too many scientists research the brain as if it is a dissected specimen. Often, it really is just that, but even if it arrives complete with the messy detritus of our bodies, mucked up with imagination and opinions, it will always remain, to them, as this is an autistic adult brain. Not a person. Other, because everything other than the part they can examine in clinical isolation, is a co-occurrence to what matters.

In autism research, any ailment or condition experienced by autistic people is referred to as a co-occurring condition of autism. I have arthritis; is arthritis a co-occurring condition of autism or perhaps, is autism a co-occurring condition of arthritis? It is a mystery. What is more of a mystery is why autism research focuses solely on cognition and psychological cause and effect. This is a binary approach to research. It assumes nothing else impacts on cognition other than the posited trajectory of autism. If my arthritis causes pain and pain results in depression, this blinkered attitude means my arthritis is not recognized—I am depressed purely because I am autistic. Even within this narrow channel, the only causal factors considered appear to be genetic or behavioral problems emanating from the autistic person or their parents.

As our autistic brains are apparently unconnected to our bodies, in this bizarre otherworld the impact of external forces, such as living life, with their pressures and their consequences do not apply to autistic people. The bottom line is that the majority of the scientific community is not interested in improving the lives of autistic people.

For such autism academics, this narrow focus is similar to one of Agatha Christie's stately home murders—everything occurs in-house and one does not need to look outside for culprits. For autistic people this is a tragedy. These cozy research silos mean our lives are not contextualized within the world. With no realistic dimension, research will always fail us: it is not about living participating humans. When did you ever see the words “married” or “is a grandmother,” or “enjoys” in an autism article? It does not address our health or societal needs. It may mention them in passing, but then ignores them.

Commissioning is evidence based—and as research has failed to gather evidence of our health or societal needs—commissioners do not have to budget for support. As long as the absence of evidence allows health and social welfare providers to avoid allocating budgets or services, autistic adults will not receive parity of health or social provision. The three wise monkeys of mental health, learning disability, and treasury can bounce us away from their budgets, safe in the knowledge that they have seen no evidence, heard no evidence, so need not speak of evidence.

In a 2016 editorial, I asked “Who will look after me if I need care? How will I survive a long stay in a hospital? Will a care home pressure me to join in social activities because that is what neurotypical people want? How will I be judged by my peer residents if I don't make small-talk or gossip? If sensory overload or anxiety leads to a meltdown, will I be shunted straight to the dementia ward?”¹

Nobody answered. My editorial has been repeatedly cited in subsequent research. There are systematic reviews of this and that. And yet more cognition and neuroscience research by academics, most of whom then ignore the fact that my questions all related to pragmatic aspects of aging and were not seeking answers to details such as the proportion of gray to white matter in my skull. As I am now over 60, it is the gray and white matter growing out of it that makes the difference to my life: growing old in a society that is not geared up to cater for us is the most salient issue in that piece.

I am not against research or researchers: I have participated and contributed to many projects in various universities and there are some outstanding exceptions to my argument.^2,3 They stand out for both the work that they do and for their rarity of approach.

However, aspects of participation and a failure to recommend specific and dynamic change means I recently decided it is time I gave up on university-based autism research. Sometimes I felt I was the token autistic and sometimes I have been listened to, although in many cases my point of view was cherry picked for the bits that enhanced the project, omitting anything that questioned it. True participatory research requires the voice of the autistic participant to have an editorial weight, particularly in the final research article.

At the moment, the role of the named autistic participants tends to focus on helping to adapt the language used to make the research acceptable to those autistic participants who will fill in surveys or be interviewed. And to lend our personal credibility to the researcher, by assuring our autistic peers that this particular researcher is OK, that they have autistic best interests in mind (because so many of us have felt used before). After that, our role tends to become increasingly redundant. When the work is published, we stand to be congratulated or criticized by our autistic peers, who judge it rightly, by its value to our community. We are held to account. However, having had no control over the finished work, our input may have been undermined in the output. It is as much a gamble as backing a horse. I had rather back a horse—all I have to lose is my money.

But mainly, I have given up because nothing ever happens as a result of the work. There are plaudits for the researchers, citations, a place in the merry go round of conferences and careers are advanced.

Essentially, the findings never filter through to the people who could use them to improve our lives and so our lives go unimproved. I am not an academic and I do not seek a place in the cabal so there is nothing in it for me, unless funders make it a condition of funding, that the work is condensed into guidance and advocated to policy and decision makers. Only then might it benefit aging autistic people.

I am left questioning why autism in adulthood research exists? If it is not to improve the lives of autistic adults, what is it for? Importantly, who is it for? Some of the answers that occur to me are banal, some chilling and perhaps a subject for a different article on a different day.

Another question is, who is doing holistic autism research? It is happening, although evolving so slowly that I will not see improvement in my lifetime. As I enter my own dinosaur years, I feel I have earned the right to say we need to wait until the academic dinosaurs die out. Much of the valuable work is coming from inspired early career researchers often stretching against the boundaries of autism research departments, or working in other fields, where autism is just one aspect of being inclusive. As more neurodivergent researchers join academia, stasis will be challenged, but those pioneers are forging uncharted paths, battling marginalization and prejudice. It is possible to follow the well-trodden path to a successful academic career that ignores autistic people. However, I want to galvanise researchers who might choose to enhance autistic lives, rather just enhancing their list of publications.

Here I am now, an autistic adult, reportedly growing cantankerous. Autistic dementia? (Quick, sign her up for cognitive decline research!) No, I am just ungrateful at repeated invitations to be othered from within the team. I have decided that my remaining time is better spent working with social researchers, sleep researchers, housing researchers, the arts, and so on. Because in the end, autism is a co-occurring condition of being human.