#autism article

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Imagine you are visiting a very different culture – if you are from Europe or the United States, then perhaps somewhere like Japan. On arrival at your host’s house, you hesitate on the threshold – should you remove your shoes? Is shaking hands appropriate? Should you have brought a gift? Is your host offended already, but being polite by not showing it?

In this situation, where the unspoken social rules are mysterious to you, it would be natural to watch others carefully and copy what they do. Over time, by observing and copying, you might succeed in blending in – but it will be exhausting, even after some things become almost habitual. And, of course, there is always the risk that your tactics backfire – for instance, you might inappropriately copy behaviour that’s deemed acceptable only from one gender, or in one specific context.

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Whereas autistic men like myself are often identified early on, women report that their symptoms are dismissed, sometimes for many years, due to stereotypes about their gender and race.

“Social awkwardness? Of course not; apparently I’m just rude—like all the stereotypes of ‘sassy’ black women rolling their heads and necks in a circle while firing off some retort,” Onaiwu says. “Lack of eye contact? Apparently I’m a ‘shy girl’ or ‘playing hard to get’ or ‘shifty.’ Or maybe I’m just being respectful and docile because I’m African and direct eye contact might be a faux pas. Sensory overload, or maybe a meltdown? Nope, more like aggression or being a drama queen. Anything but what it really is—an Autistic person being Autistic who happens to be black and happens to be a woman.”

According to Sharon daVanport, who identifies as autistic and serves as president of Autism Women’s Network, these types of gendered expectations can be very difficult to navigate. For instance, “an eight-year old boy might have an intense interest in collecting maps,” leading his parents to worry that his desire to remain inside all the time is a signal that something might be wrong. “In contrast, a young girl who spends hours upon hours researching her intense interest will be considered quiet, polite, lady-like, and all the other gender-based labels which society assigns to girls before they’re even born,” she said.

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Autistic people described as ‘high functioning’ because they do not have intellectual disability often still struggle with daily living skills, according to a study of more than 2,000 people on the spectrum. The data should put the term ‘high functioning’ out of commission for good, the researchers argue.

The study, the largest of its type, shows that individuals deemed high functioning often have poor ‘adaptive behavior’ — the ability to perform basic tasks such as brushing teeth, tying shoelaces or taking the bus.

“The term completely disregards the difficulties these individuals have on a day-to-day basis,” says lead investigator Andrew Whitehouse, professor of autism research at the Telethon Kids Institute and the University of Western Australia in Perth, Australia.

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A process involved in neurodevelopmental disorders that we are only just beginning to understand is “compensation” – the way that a deficit can be partially or wholly masked by automatic mental processes and/or deliberate behavioural strategies. For instance, a person with dyslexia may achieve typical levels of reading ability after an earlier diagnosis, not because the disorder has gone away (subtle tests might show continuing problems in phonological processing, for example) but through the use of behavioural strategies, such as reverse-engineering a tricky word from the meaning of words around it. In a new review in Neuroscience and Biobehavioral Reviews Lucy Anne Livingston and Francesca Happé, at the Institute of Psychiatry in London, take us through what compensation might mean for autism.

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Between 8 and 10 percent of children and adolescents seen at gender clinics around the world meet the diagnostic criteria for autism, according to studies carried out over the past five years, while roughly 20 percent have autism traits such as impaired social and communication skills or intense focus and attention to detail. Some seek treatment for their gender dysphoria already knowing or suspecting they have autism, but the majority of people in these studies had never sought nor received an autism diagnosis. What’s more, roughly the same numbers of birth males and females appear to be affected — which is surprising, given that in the general population, autism skews male.

At this early stage of research into the overlap between autism and gender dysphoria, much remains unknown — for example, whether gender identity develops differently in people with autism. This lack of information challenges both clinicians and families who want to do what’s best for transgender children.

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Only recently have researchers begun systematically exploring the overlap between gender dysphoria and autism; the first study to assess the convergence of the two conditions was published just six years ago. It included 231 children and adolescents who had been referred to the Gender Identity Clinic of the Vrije University Medical Center in Amsterdam between April 2004 and October 2007. The researchers found the incidence of autism among the children was 7.8 percent, 10 times higher than the rate in the general population. Among the adolescents in the sample, the incidence was even higher, at 9.4 percent.

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Still, she cautions that sometimes, what looks like autism may actually be untreated gender dysphoria. “So much of the experience of being trans can look like the spectrum experience,” she says. People who don’t want to socialize in their birth genders may seem to have poor social skills, for example; they may also feel so uncomfortable with their bodies that they neglect their appearance. “That can sometimes be greatly alleviated if you give that person appropriate gender support,” she says.

Others agree with these insights. A 2015 study by researchers from Boston Children’s Hospital reported that 23.1 percent of young people presenting with gender dysphoria at a gender clinic there had possible, likely or very likely Asperger syndrome, as measured by the Asperger Syndrome Diagnostic Scale, even though few had an existing diagnosis. Based on these findings, the researchers recommend routine autism screening at gender clinics.

From the position of the non-autistic onlooker, autistic people can seem to have an impaired understanding of social life and other people. Such ideas are embedded within dominant psychological theories that attempt to explain autism as pathology, a deviance from normal development and cognitive functioning. Prevalent amongst these is the concept that autistic people have impaired ‘theory of mind’ – the ability to imagine the thoughts and feelings of others, in order to comprehend and predict their behaviour (also called ‘mind-reading’ and ‘mentalising’).

Whilst it is true that autistic people can struggle to process and understand the intentions of others within social interactions, when one listens to the accounts of autistic people, one could say such problems are in both directions. Theory of autistic minds often seem to leave a lot to be desired, and we would not need organisations like the National Autistic Society trying to spread awareness and understanding of autism if it were so easy to empathise with autistic ways of perceiving and being in the world. From the earliest written accounts of autistic people one can see numerous mentions of this lack of understanding from others. It is this issue of empathy problems between autistic and non-autistic people being mutual in character that led to the development of the ‘double empathy problem’ as a theory.

Theory of double empathy:

Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension. I first started to publish theoretical accounts of this issue in the early 2010s, yet similar ideas can be found in the work of Luke Beardon regarding ‘cross-neurological theory of mind’ and in that of the philosopher Ian Hacking.

More recently research by Elizabeth Sheppard and team at the University of Nottingham, Brett Heasman at the London School of Economics, and Noah Sasson at the University of Texas at Dallas, have shown that in experimental conditions, non-autistic people struggled to read the emotions of autistic participants, or form negative first impressions of autistic people. Such evidence would suggest that the dominant psychological theories of autism are partial explanations at best.

According to the theory of the ‘double empathy problem’, these issues are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world. If one has ever experienced a conversation with someone who one does not share a first language with, or even an interest in the topic of a conversation, one may experience something similar (albeit probably briefly).

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Highly intelligent people with autism tend to evaluate behavior based upon outcomes, not intentions.

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Two friends take a coffee break at a chemical plant. Mary asks Grace to pass the sugar, and Grace hands her a dispenser clearly labeled ‘Sugar.’ Unbeknownst to either woman, however, the dispenser contains not sugar, but a poisonous chemical that looks like it. Mary drinks her toxin-sweetened coffee and dies a few hours later. 

Is Grace to blame?

Most people would say, “No,” because Grace didn’t know that the dispenser contained poison. But after reading 20 similar vignettes in which the actions of protagonists led to either a negative or neutral outcome, a group of 24 highly intelligent adults with autism consistently assigned a higher degree of moral blame to individuals with innocent intentions, compared with controls.

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“It’s been very difficult to demonstrate [mind blindness] on behavioral tests, especially with adults who are very clever,” says Uta Frith, emeritus professor of cognitive development at University College London and one of the architects of the theory of mind. Highly intelligent people with autism learn to use logic to help them correctly answer questions, she says. “This is part of their wonderful ability to adapt, to get around things.”

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