When I was a student I had a job as a support worker with my university’s disability liaison unit, a service that assisted students with disabilities. I worked with several students, including a man with cerebral palsy who was studying computer science, and a woman who was blind and completing an arts degree, both of whom needed a note taker in their lectures. I also sat with a woman with Tourette syndrome during her exams, which she completed in solitude so that her frequent verbal and motor tics (singing snippets of radio ads and pop songs, clapping her hands and randomly jumping up out of her seat) would not disturb other students. The most memorable student I worked with was George, a man the same age as me, who had a diagnosis of Asperger syndrome – what many refer to now as ‘high-functioning autism spectrum disorder’.
Asperger syndrome and autism were first described in the early 1940s by two Austrian physicians, Hans Asperger and Leo Kanner respectively. Coincidentally they both used the term ‘autistic’ to describe children, typically boys, who had difficulty interacting socially and had repetitive, restricted interests. These children also showed a range of language and cognitive abilities, from complete absence of speech and intellectual disability, to highly developed skills in specific cognitive domains. The symptoms of Asperger syndrome as characterised in the original description were social difficulties, such as isolation or lack of reciprocity in social interactions; normal to advanced language acquisition but subtle abnormalities in verbal and non-verbal communication, such as pedantic vocabulary; a lack of variation in the pitch of their speech; a narrow and restricted focus of interests; advanced cognitive skills in specific areas; and motor clumsiness.
Asperger syndrome didn’t receive much attention until about 50 years after Hans Asperger’s original research was published, when his work was translated into English by world-renowned autism researcher Uta Frith. Another famous autism researcher, Lorna Wing, had proposed in the 1980s that Asperger syndrome and Kanner’s autism were part of an ‘autism spectrum’. Nevertheless, the idea that they were two separate disorders had already been unleashed, and garnered much scientific attention and public interest from the 1990s onwards. Many authors distinguished the conditions on the basis that children with Asperger syndrome had normal development in their first few years of life, and their cognitive and linguistic skills were normal or enhanced. Furthermore, some argued that there were qualitative differences in the nature of the social impairment in that children with autism were completely uninterested in other people, while those with Asperger syndrome tried to engage with others but did so in a dysfunctional way.
Unlike autism, which remains in the current version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as ‘Autism Spectrum Disorder’, Asperger syndrome only had a brief existence as a DSM diagnosis in the fourth version (DSM-IV), after which it was dropped. The condition was embroiled in controversy from the outset, mainly because of the diagnostic criteria. If someone showed significant impairment in social interactions and restricted interests, then they met the criteria for autism – meaning that they could not then be diagnosed with Asperger syndrome. Ironically, even Hans Asperger’s original cases would have failed to qualify for a diagnosis of Asperger syndrome according to the DSM-IV. It was also unclear whether Asperger syndrome and ‘high-functioning autism spectrum disorder’ could actually be distinguished from one another through clinical assessment or neuroimaging. Research showed only subtle differences, if any, and eventually it was decided that there was insufficient evidence to warrant a distinction between the two diagnoses. This led to the two conditions being merged under the umbrella term of ‘autism spectrum disorder’ (ASD), with Asperger syndrome now typically referred to as high-functioning ASD.
There is still debate about whether Asperger’s and high-functioning ASD are actually the same thing. Many people who had been diagnosed with ‘Asperger syndrome’ were shocked when their diagnosis suddenly ceased to exist. It was considered an ‘identity-defining diagnosis’; many had adopted the term ‘Aspy’. The ‘neurodiversity’ movement argues that diagnostic labels of autism or Asperger syndrome should be embraced and accepted as normal variations of humanity, each with unique benefits that are worthy of being celebrated and utilised by society. This topic is eloquently addressed by Steve Silberman in his book NeuroTribes, in which he writes:
Autistic people have always been part of the human community, though they have often been relegated to the margins of society…Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution. ‘Neurodiversity’ advocates propose that instead of viewing this gift as an error of nature – a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion – society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. They suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.
The controversy surrounding Asperger syndrome continues, with claims that Hans Asperger was an active Nazi collaborator and participated in a child euthanasia program during World War II coming to light in early 2018. There have been calls for his name to be ‘scrapped from the medical lexicon’, with many previous supporters of the term ‘Asperger syndrome’ abandoning it.
My first introduction to Asperger syndrome was when I met George. He was well over six feet tall and obese – or, as he prefers to say, he has a ‘large mass’. When I was his support worker he wore his pants pulled up high over his belly, and he tended to bounce rather than walk – there was no missing him as he bobbed around the university. He would talk to himself, or approach strangers and shout out what was on his mind. When I first met him he was doing a science degree and needed support to make sure he went to his lectures, to keep him on track in classes, and to try to prevent him from shouting out and disrupting his fellow students. His special interests were the weather, the environment, train timetables, cricket statistics and Jeff Kennett, the then-premier of Victoria, who George particularly disliked. One of his favourite phrases was: ‘Who’s bad? Jeff Kennett!’ He once shouted this in the microphone in front of a lecture hall full of students and proceeded to launch into a lengthy rant about all that was bad about Jeff. The students stared and laughed, and I had to physically pull George away from the microphone and into a seat when the stunned lecturer finally arrived.
George’s knowledge of the local train timetables was astounding. If I told him I was catching a train home to visit my parents, he would provide detailed advice about my options. ‘You absolutely must get the 534 as this is an express,’ he would say. ‘The 614 will stop all stations and take you 27 minutes longer. Alternatively, you could catch the 555 from Spencer Street and that will take you through the loop and then only stop at three stations…’
When we walked between lecture theatres on the university campus, George liked to link arms with me. I never felt self-conscious about this. Rather, I was chuffed that someone who had known difficulties connecting socially with people seemed to have a connection with me. It was his way of showing he was comfortable, and I never felt anything other than a sense of camaraderie. I think he liked being as close as possible to my ear, to ensure I was listening to his views about whichever of his pet topics was engulfing his brain at that moment. In winter, he often walked around with his hands down his pants. This typically resulted in concerned or puzzled looks from people passing by. I recall saying to him several times, ‘George, you really need to take your hands out of your pants right now. It’s best not to have them in there while you’re walking around in public.’ His response each time was: ‘But it feels so warm in there.’
He had no idea of the social inappropriateness of this simple act of keeping his hands warm, or of the possibility that others could interpret this as a potentially sexual act. It was purely a sensory thing to him. I can’t recall if he ever tried to link arms with me with one hand down his pants, but even if he had, there certainly would not have been any sexual element to it. There was, however, no denying the sexual nature of public masturbation, which George engaged in several times.
He was first caught in the university library, one of his favourite spots, and on another occasion on a couch outside the faculty office. This was no doubt a very stressful situation for all those involved: the witness, the security guard called to deal with George, and of course George himself, who due to the nature of his condition had difficulty comprehending what all the fuss was about. On one occasion, when we were about to enter a lecture hall, George suddenly announced that he had to go to the toilet. I was waiting for over ten minutes and thought I’d better check on him. I walked down the hall towards the men’s toilets, and as I approached the toilet door I could hear him talking to himself about ‘astronomy and astrology’ while making sounds of pleasure. I opened the door just a crack and said, loudly, ‘George, your lecture started ten minutes ago. We really need to go now.’
‘Yes, I’m coming, I’m coming.’
I shook my head and smiled at the pun.
On another occasion, I was waiting outside a lecture hall for George to arrive when a student who recognised me as his support worker grabbed my arm, looking frantic. ‘Are you waiting for George? Can you please go to the faculty office? They don’t know what to do. He’s having a major meltdown.’ She didn’t even wait for my response but turned and ran back down the hall. I felt my stomach clench as I followed close behind her, wondering what state he would be in, and what they expected me to do.
I heard him long before I saw him, his penetrating voice booming down the hall. He was sitting behind a desk, intermittently slamming the phone receiver into his chest and shouting into it. There were at least six university staff members backed against the office wall, all staring at him, their facial expressions a mix of fear and fascination. I went straight to George and put my hand on his shoulder. ‘George, it’s Amee. You need to stop shouting so we can talk. Come on, we have a lecture to go to.’ He looked at me, took a deep breath and dropped the phone on the desk. I kept my hand on his shoulder as he stood up, and we walked out of the office. I saw one of the staff raise their eyebrows and whisper, ‘Wow.’
I can’t recall the incident that triggered this outburst but heard later that he had been shouting for over 15 minutes and no one had known what to do. I hadn’t known what to do either, but my advantage was that George was familiar with me. I think that my instinct to touch him was the key to ending his rage. He could look frightening – his mere size was daunting enough, let alone when it was combined with shouting and slamming a phone into his chest. Reflecting on these incidents, I find it interesting that no one had any qualms about approaching him while he masturbated in public. I guess sex is more predictable than rage.
Is George’s behaviour, in particular his public masturbation, typical for someone on the autism spectrum? I recall his mother saying to me years ago how she felt sad that he would probably never have a sexual relationship with anyone other than himself. How do the symptoms of ASD, in particular impaired social and communication skills, impact on sexual interactions, which could be considered some of the most complex and demanding of all human social behaviours? Are the stereotypical beliefs that people who are ‘on the spectrum’ are asexual and uninterested in romantic relationships actually true?
THE RESULTS OF RESEARCH INTO THE SEX LIVES OF people on the autism spectrum is mixed. Some studies have found differences in sexual knowledge, experiences, attitudes and behaviours between people with ASD and ‘neurotypicals’ (those without the condition), while others have found no differences at all. This inconsistency is not surprising given the heterogeneous nature of ASD, and the methodological variations between studies. One recent review of the issue shows that people with ASD do seek out sexual relationships, and experience the full range of human sexual activities and behaviours. In some cases, however, the core symptoms of the condition, combined with limited sexual knowledge and experience, can lead to the development of challenging sexual behaviours, such as hypersexuality, paraphilic disorders (see Chapter 7) and, in rare cases, even sexual offending.
Hypersexuality, and paraphilic fantasies and behaviours, have been found to be more common in adult males with ASD than in neurotypical people; some researchers have hypothesised that the restricted interests and repetitive behaviours commonly seen in ASD may transform into sexualised behaviours in adulthood. Furthermore, a sensitivity to sensory stimuli, in particular touch, can lead to an overreaction or underreaction to sexual stimulation. A caress that may feel deliciously sexy to a neurotypical person could be experienced as a commonplace interaction, like a handshake, to someone on the spectrum.
Excessive masturbation is common in males who have ASD. For example, in one case study it was reported that a 17-year-old man with a diagnosis of Asperger syndrome had intrusive sexual thoughts and urges, and was masturbating 25 to 30 times a day, resulting in penile ulcers. It is unclear whether this excessive behaviour represented a repetitive behaviour, was part of an obsessive-compulsive disorder (common in people with ASD), was the result of sensory hyposensitivity, or was the only means of him being sexually active due to limited social skills. Public masturbation was the most common type of inappropriate sexual behaviour reported by carers or parents of adolescents and adults with ASD. So it seems that George’s exploits in the university library were not unusual for someone on the spectrum.
Why are these sexual behaviours found more frequently in males with ASD? First, there are more males than females diagnosed as being on the spectrum, at a ratio of somewhere around 3:1 or 4:1, and much of the research about sex on the spectrum has focused on men. Interestingly, a study published in 2017 by Daniel Schöttle and colleagues that directly compared hypersexuality in people with ASD and neurotypicals found that there were no differences between females on the spectrum and those who were neurotypical. The authors of this study argued that this gender difference was due to the observation that females with ASD ‘seem to be better socially adapted and usually show less pronounced ASD symptomatology’. But did the study find that rates of hypersexuality in males with ASD were higher than in the general population? Yes, it did. Previous studies of the prevalence of hypersexuality in healthy males give estimates of 3–12 per cent, and in the males with ASD in the study, the prevalence of hypersexuality was 30 per cent.
This same study also looked at rates of paraphilias in people with ASD. The most common paraphilias reported by males with ASD were voyeuristic fantasies (39 per cent) and behaviours (28 per cent), while in the neurotypical group such fantasies and behaviours were reported in 10 per cent and 3 per cent of subjects respectively. Masochistic (sexual arousal from suffering physical pain or humiliation) and sadistic (sexual arousal from inflicting physical or psychological pain on a sexual partner) fantasies and behaviours were also reported more often by males with ASD than those without. It is thought that this may be due to a high level of sensory hyposensitivity in people with ASD – that is, lack of sensitivity – and the corresponding need for higher levels of stimulation to become sexually aroused. Furthermore, a heightened sex drive may mean that people with ASD are more likely to act out their sexual interests and to seek novel sexual activities. When comparing paraphilias in females with and without ASD, the only difference the authors found was that masochistic behaviours were reported more frequently by females without ASD. So once again, there is a gender difference here. As with hypersexuality, these rates are also higher than prevalence estimates found in general population studies.
When it comes to these novel sexual activities, I was surprised to find an example of the rare paraphilia called zoophilia in a 17-year-old with ASD, who I’ll call Sam. He lived in rural Sri Lanka. As a toddler, he had shown some classic ASD symptoms – playing alone at preschool, not sustaining eye contact and not engaging in imaginative play. He had demonstrated restricted repetitive behaviours such as lining up toys, delayed echolalia (echoing other people’s speech) and an extreme need to only eat particular foods. His speech had regressed when he was two years old until he spoke only single words. He was diagnosed with ASD at five years of age and treated with behavioural interventions. After a few years his parents stopped taking him for reviews due to the travel costs. Over the years his speech improved, as did his restricted and repetitive behaviours, but he still had difficulty establishing peer relationships.
In the year before the authors of the study met him, his parents noticed Sam was spending more time at his grandparents’ cowshed. They didn’t intervene as they thought he was developing an affinity or ‘warmth’ for the animals, which was a rare thing for Sam to show. A neighbour saw Sam masturbating near the cowshed one day and told his mother. Sam’s father warned him not to engage in this behaviour publicly but did not think of any connection to the cattle. ‘Things took a twist when his grandmother found him having penetrative intercourse with the heifer. She had screamed and reportedly had fainted,’ the authors of the study noted.
Sam’s parents immediately took him to a local healer in their village. He was prescribed a ‘thovil’ – an exorcism ritual – to relieve him of ‘demonic possessions’, but Sam’s parents could not afford the ritual and instead took him to the free local health service the next day. He was referred to the youth psychiatric service and, after initially denying his sexual urges, he eventually requested help. He reported that for the preceding year he had experienced recurrent and intense sexual fantasies about having sex with cattle, and had masturbated while observing them and watching them mate. Acting on these urges had meant he had missed school. He had never had a romantic or sexual relationship with another human; although he had watched (human) internet pornography, he said that he did not enjoy it compared to watching animals. He denied any sexual interest in non-living objects, children or adult males, but acknowledged some sexual interest in adult females.
Sam was treated with the antidepressant Sertraline, cognitive behavioural therapy and ‘orgasmic reconditioning’ that aimed to reduce inappropriate sexual arousal. (Orgasmic reconditioning is a controversial treatment that has little empirical support; it involves a person with ‘deviant’ sexual preferences masturbating to ‘deviant’ materials, which are then switched to ‘non-deviant’ materials just prior to orgasm – and earlier in the process as the treatment progresses. The idea is that eventually the person’s sexual pleasure will be diverted to the non-deviant material.) Sam was also given sex education and social skills training. After three months of treatment, Sam reported better control of his sexual urges and reduced psychological distress. His parents had not observed any further deviant sexual behaviour. It is important to note that this is the only reported case of zoophilia in a person with ASD. Sam’s case is an extreme example of how ASD-associated difficulties in establishing human sexual relationships may be associated with the development of a paraphilic disorder.
Is there anything different about the way the sexual neural network operates for people with ASD that might help explain the higher rates of some sexual behaviours? ASD is neurodevelopmental in origin, meaning that the brain changes start in utero and continue over time. It’s also important to remember that there are enormous variations in how ASD affects people, so understanding and describing the neurobiological mechanisms underlying ASD is very difficult. Nevertheless, based on numerous neuroimaging studies that have compared the brains of people with ASD and neurotypicals, there is a consensus that neuroanatomical structure, functioning and connectivity do differ between the two groups. It is far beyond the scope of this chapter to canvass this research thoroughly, but one recent study did turn up a few interesting points about specific brain regions that are relevant to us here.
In the largest neuroimaging study to date of people with ASD – 1500 people were studied, ranging in age from two to 64 years – a group of international experts found that compared with neurotypicals, people with ASD had a larger total brain volume and cortical thickness, and smaller volumes of specific brain structures including the amygdala and parts of the basal ganglia (nucleus accumbens, putamen). The ASD group also showed increased thickness of the frontal cortex, and decreased thickness of the temporal cortex. The basal ganglia, frontal and temporal brain regions all play a role in the sexual neural network. From a broader perspective, these brain regions are also part of what has been termed the ‘social and emotional brain’, a larger network of brain structures that are involved in processing social and emotional information, such as empathy, face processing and self-referential processing.
As psychiatry professor Christine Ecker highlights in her overview of these neuroimaging findings, it is important to note that ‘the neuroanatomical differences are neither unique to, nor causal for ASD’. In regard to the differences in sexual behaviour between people with ASD and neurotypicals, there has been no study to date that has investigated whether differences exist in the brains of those with ASD who have paraphilias or hypersexuality as compared to those with ASD who do not have these specific sexual behaviours. So although we know that, overall, it appears that people with ASD do have brain differences in regions that are part of the sexual neural network, not all people with ASD experience sexual changes, and we don’t know if there is something unique about the brains of those people who do. This is a question for future research.
WHEN PEOPLE WITH ASD DO FORM SEXUAL RELATIONships, it has been reported that rates of homosexual or bisexual orientation are higher than in the neurotypical population. There have been various proposals for why this might be, including that people with ASD may be less sensitive to gender roles or social norms, or that gender is less relevant to them when searching for or finding partners. I don’t know if George ever had a girlfriend or boyfriend, or any friends at all, nor do I know any more about his sex life than what I knew about him during my time as his support worker. I do feel that we were – and still are – friends; we have maintained contact since I finished working for the disability liaison unit decades ago.
George successfully completed his Bachelor of Science, followed by a Master’s degree, and also commenced a librarianship course at a different university. Unfortunately, he got into a scuffle with a security guard and was told he was never allowed back on campus, so he was not able to finish this course. I was enraged when I heard about this, and presented his case at an international autism conference with the title ‘University challenge: A student with Asperger Syndrome shares his rage’. He would have made a wonderful librarian or transport information officer. It would take an understanding employer to take him on, but the benefits of utilising George’s unique gifts would surely be worth it.
George used to call my mobile phone at random times. There was never any greeting, just a sudden announcement about his current ‘mass’, or his views on the weather or the latest government environmental policy. Over the years he called less frequently, and now he prefers to write letters. A few times a year a computer-printed, hand-signed letter will arrive; I recognise his handwriting on the envelope immediately, and always enjoy reading about his life. I laughed when reading the most recent one, as I could hear his distinct voice using the very same words decades ago, when he would question me about my preferred weather and request an exact temperature in degrees Celsius. In this letter, he wrote about a
dreadful 38 degree Friday earlier this month. That day was some of the worst weather I have been out in, with dust and debris making the awful heat even worse – and Mummy complained that I still accosted people about whether they would prefer it to be 15 degrees instead (most agree but say 25 degrees is what they are looking for, as I have known since 2001).
Each time a letter arrives, I reflect on the time I spent working with George when we were both students, and my reflections always make me smile. He has given me insights into neurodiversity, and what sex might be like for someone on the spectrum, that I have never forgotten.