Journalist Sue Nelson was diagnosed with autism late in life, and it forced her to reconsider some of her childhood habits and preferences.
As a child, no one suspected I was autistic, but there were several sensory cues. Aside from a proclivity to repeatedly stroke soft fabrics or run grains of sand through my fingers, I found swirling and gentle rocking to be hypnotic.
When I was finally diagnosed with autism at the age of 60, it gave me a new perspective on how and why I behave the way I do. This includes certain childhood behaviours, such as fabric-stroking and insisting on particular foods. However, it also raised questions, such as what these preferences might reveal about how children with autism perceive the world. And how can we put this knowledge to use?
As a science journalist, I naturally look to scientific research for answers – and there is a growing body of evidence providing fascinating new insights into long-mysterious behaviours.
According to the World Health Organization, one in every 100 children has Autism Spectrum Disorder. It is a developmental disorder caused by brain differences that can affect how a person absorbs, processes, and responds to information. It is usually classified on a scale from mild to severe. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM 5) divides this spectrum into levels 1, 2, and 3, with level 3 autism requiring “very substantial support.” There is a significant variation within those categories.
Take, for example, the swirling and rocking.
These types of rhythmic repetitive actions, which are common in autism, are known as self-stimulatory behaviour, or “stimming.” They may also include hand flapping, foot shaking, and finger flicking. Even now, I can’t stop myself from fondling cashmere or faux fur clothing in stores, and I frequently sneakily touch the back of someone’s irresistibly soft coat in public. I also body rock on occasion, but only in private because I know it makes most people uncomfortable.
To others, stuttering may appear pointless or even disturbing. As a result, various treatments are available to change or reduce it. However, as with many autism-related behaviours, the person engaging in it is not necessarily experiencing what you might think.
While some forms of stimming are harmful and should be avoided, such as a child repeatedly hitting their head against a wall, others are beneficial. They are not erratic movements, but rather serve a purpose and can be a soothing coping mechanism. Rocking relieves anxiety for me and many others, young and old.
“It’s repetitive and soothing,” says Steven Kapp, a developmental psychologist at the University of Portsmouth who was diagnosed with autism when he was 13 years old. “As a result, I believe many researchers have struggled to understand why people engage in these behaviours.”
Kapp’s autism informs his work, and other researchers have made an increasing effort in recent years to draw on autistic people’s perspectives on their own experiences. This may differ greatly from the perceptions or judgments of those around them.
Outside observers, for example, may interpret certain repetitive movements, such as hand flapping, as a distress signal. However, stimming was reported to be enjoyable by 80% of people with autism in a 2015 survey.
Several study participants “stimmed happily as children,” but later hid or changed their behaviour out of fear of being judged.
Kapp oversaw a study of autistic adults to delve deeper into this behaviour. Many people said they used stimming to cope with sensory overload, such as in “confusing, unpredictable, overwhelming environments” that caused anxiety, which was then alleviated by the movement. However, stimming was also used to express any strong emotion, such as happiness or excitement.
However, in public, the study participants tended to suppress these soothing and enjoyable movements. According to the study, several “stimmed happily as young children” but hid or changed their behaviour later, in adolescence, when they realised others judged them negatively for it.
“There are a lot of autistic people who still stimm,” says Kapp. “However, we are less likely to do it in public because [others] frequently do not understand, and thus stigmatise it. People are more likely to accept something they understand. That’s what the study I led discovered.” Participants reported that they stim openly when around accepting friends and family.
Soup with tomatoes and chocolate pudding
Repeated restrictive behaviours (RRBs), which include stimming as well as certain routines and rituals, can also have an impact on family dynamics. While my tendency as a child to constantly rearrange toys into categories such as size or colour rather than play with them – which is common among autistic children – didn’t have much of an impact on the family, I suspect the only-eating-tomato-soup-and-chocolate-pudding phase was a bit more of a problem. My parents, thankfully, accepted this and did not turn the dinner table into a battleground.
Indeed, many autistic children are labelled as “picky eaters.” According to one large study, seven out of ten people have atypical eating habits, the most common of which is having limited food preferences. According to research, children with autism are extremely sensitive to flavours, smells, and textures. It’s back to sensory perception for me, and it’s relatable. After that initial period of restrictive eating as a child, I am now addicted to a variety of highly spiced foods containing chilli and garlic. I still can’t eat a chopped egg sandwich without adding crisps for textured crunch, and the thought of white fish in a white sauce on mashed potatoes makes me sick.
Of course, not only autistic people have food preferences and aversions. However, the interaction of sensory experiences, emotional aspects, and emotional regulation in people with autism is still not fully understood. This includes the emotionally powerful effects of sensory overload.
Uta Frith, emeritus professor of cognitive development at University College London, has spent her career researching autistic children’s behaviour. “There was a theory that emotions were absent or disturbed in autism, which I believe is simply not true,” Frith says. “On the contrary, emotions are prominent, including high anxiety, anger, and aggression.” This can result in tantrum-like meltdowns, which are frequently caused by sensory overload.
When someone is overstimulated by light or sound, Kapp suggests “perhaps removing oneself from the environment or getting out an accommodation like wearing headphones or sunglasses, or something to dull some of the sensation.” “Because many autistic people are hypersensitive and perceive things more painfully or sharply than others,” he explains.