“Does sex matter?” asks Professor Simon Baron-Cohen of the Autism Research Centre, Cambridge. While this brings a smile, it’s a question that relates to one of the hottest and relatively unknown topics of this decade. Is there a difference between female and male autism, and does this difference matter?
The quick answer is yes there is and yes it does. According to current research, Autism Spectrum Disorder (ASD) affects one in 100 people (or one in 88 if you are in the USA), but what about the male to female ratio? There’s no definitive answer to date, and the reason for this is the burning question on many clinician and researcher’s lips, and broadly the topic of my PhD.
Varying studies place the male to female ratio in the diagnosis of ASD at anything from 2:1 to 16:1. Whatever the true ratio is, there’s been a steady increase in female referrals to diagnostic clinics across the UK in the last 10 years – and yet because of the male bias in both the definition and the diagnostic criteria of ASD, girls are less like to be identified as ASD, even when their symptoms are equally as severe if not as easily identifiable.
Parents, lovers and friends
How does this subject relate to our understanding of intimacy and empathy? Well, autism is characterised as “a lifelong developmental disability that affects how a person communicates with, and relates to, other people” (The National Autistic Society). When we hear ‘autism’, most are hard-pushed to not draw up memories of watching Dustin Hoffman counting toothpicks in Rainman. While his performance was Oscar worthy, in many ways his portrayal did a disservice to people with ASD. When we visualise autism, we think ‘aloof’, ‘absent-minded Professors’ or people with intense specialist skills involving numbers. Not many would automatically think of parents, mothers, lovers or friends.
During the years I’ve spent in the clinic, the number of autistic people I’ve met who desire friendships far outweigh those who choose loneliness. One step towards understanding this is accepting that people with autism can be empathetic – it’s just that they might show it in a way us ‘neurotypicals’ don’t recognise. One woman, Helen, described to me how sometimes it can be easier to remain detached from a situation and be thought of as distant or aloof than to try to respond correctly and get it wrong with hideous consequences, for example hugging someone at the wrong time or for slightly too long.
Rules and freedom
We, as the general public, take for granted that we understand ‘the rules’, that set of social regulations that help us monitor our behaviour and tell us what to do, and when. Monica (not her real name) explained that autistic women ‘see’ one another through shared experiences and bonds develop fast. She describes her “need to be alone, but not lonely”. “There’s a freedom to being more authentic, to being less focussed on projecting an image of coping and being more open to who we are. It’s liberating. And that’s held together by humans relating and understanding each other,” she says.
It’s a subject I could write about for days, but I feel it’s best to handover to the true experts: two women I’ve had the good fortune to come into contact with through my work. Both Arwen and Robyn are women diagnosed with ASD who have kindly agreed to share their thoughts on intimacy and empathy.
I’m a 28 year old woman and I’m on the autism spectrum. I’ve been asked to talk to you about intimacy and empathy. These topics don’t bring a literal lump to my throat, but they make me feel like my heart is breaking.
When I was 20 I was raped. I’ve since found sexual intimacy near impossible, as if part of the man who raped me is still inside me, like an itch you can’t reach.
Being intimate emotionally can be equally difficult. I might seem very open, but I suffer a great deal with mental torment, some of which comes from bullying and people not really understanding me.
In an NAS (national autistic society) survey last year, 41% of adults on the autism spectrum said they often feel lonely. This is in comparison to 11% of the general population.
Some of the issues people face are due to others’ perception of autism, something which I am actively trying to change by speaking internationally to educate people. I often speak in the media too. It’s a source of information for many, but sometimes this information can prove misleading. When crimes are reported, particularly shootings, Asperger’s syndrome is often brought up. People in the autism community feel that Asperger’s is being blamed, or that the media is saying that people on the autism spectrum are more likely to go around killing people.
Science tells us something different. Professor Simon Baron Cohen gives a great lecture about empathy (see below) and why people on the autism spectrum are mostly the opposite to psychopaths. Psychopathy is a personality type, and it’s often cited as a reason why someone would be able to kill a group of innocent people without caring (however, not all psychopaths are killers). There’s no scientific evidence to suggest that people with autism are more likely to be psychopaths than the general population.
Theory of mind
There are many loving partners, parents, teachers and others who are on the autism spectrum and have to use empathy to be successful in their roles, and do so effectively.
A problem that many people on the autism spectrum have is with something called theory of mind. This means understanding someone else’s perspective. It’s something you have to work at, but it’s not impossible to learn. Having difficulties with theory of mind can make someone more vulnerable, and it’s likely that it’s a contributory factor to the 49% of adults on the autism spectrum who report that they’ve experienced abuse by someone who they thought of as a friend.
People with autism who can speak are often left with no support, as people often assume they’re fine. This is common with women, who tend to be better at masking their autism through speech to the point that they are less likely to be diagnosed. Some people are starting to address the way that assessments are conducted, such as Dr Judith Gould, who works at The Lorna Wing Centre in London. But once again, awareness is key.
People on the autistic spectrum can be caring, sensitive individuals. But sometimes their behaviour can be misinterpreted. When I make my Weetabix, I have to line them up side by side and pour semi-skimmed milk just over the top, then warm them at 650 watts for one minute and mush them up. Some people might describe this as “very OCD.” First of all, this is disrespectful to people who actually have OCD, but it’s also inaccurate. I do this because my brain processes sensory input differently and certain textures make me gag and throw up.
I don’t feel that autism is a sad part of me or that it leaves me unable to understand others, although it can be hard work. I wish I hadn’t had some of the negative experiences I’ve had, but if I didn’t have autism I’m sure the bullies would just find some other reason to bully and hurt. And that happens to lots of people without autism.
Everyone on the autism spectrum is different. Some don’t want friends, many do. People with ASD sit across the whole spectrum of sexuality, including asexuality.
Intimacy is essentially personal. So when you ask, “how does a woman with autism manage intimacy?”, what you’re really asking is, is my boyfriend intimate with me, or with my autism? Does it get in the way? Does it help?
It’s tempting to generalise personal experience, particularly when it gives a sense of shared ground to people too often defined by their isolation. I can’t know how much of my relationships are typical for women with autism, and how much is just me. My intense mix of impulse, adoration and loyalty, for example. Or how I love to look at people I love, and paw at their face. Or how I hate to feel seen by anybody else.
For me autism feels, at its worst, like profound alienation, existential discord. Sweet words from my aspergic boyfriend sometimes seem to have travelled a great distance; no wonder the warmth has drained out of them.
There seem to be two models of experiencing autism: alienation and intensity. Intimacy for me is a place to rest from both of these. Finding someone with whom you can rest in closeness, from alienation and from the intrusion of everyone’s terrible presence, is a rare blessing. Sympatico is hard to discover, which is perhaps why we tend to be so loyal. On the other hand, I know some women with autism find casual intimacy to be the opposite: exhausting.
Navigating social norms
I know a couple who’ve been friends for five or six years and lovers for one. They’re polyamorous and they’re deeply in love, and they couldn’t care less about society’s interpretation of their relationship. I think part of that freedom comes from her autism; from not being intuitively invested in social convention.
But there’s also the couple who’ve been happily married for more than 30 years, who are deeply in love and have always put a lot of effort into ‘being normal’. Their discomfort with anything ‘weird’, from same-sex relationships to simply calling oneself ‘Ms’ instead of ‘Mrs’, always struck me as quite autistic.
If being on the higher-functioning end of the autism spectrum adds anything to quality of life, I’d say it’s a freedom from restrictive social expectations, such as how a relationship ‘should’ work or what gender necessarily entails. I certainly know a higher proportion of autistic people in non-heteronormative relationships than in the general population. Perhaps as autistics we feel freer to exercise our queerness or polyamory, or whatever suits us.
But then there’s the married couple, who seem to feel safest with a clearly prescribed relationship model.
Empathy in excess?
I struggle to strike a balance between intimacy and distance. On the one hand, I feel distanced and at odds with the world, but on the other, I find it hard to remember that I’m emotionally separate from others. Sometimes I empathise so strongly, so instinctively, I experience intimacy where there is none. I’ve seen a man crying on a train, and started to cry for him. Then I went up and hugged him. He didn’t hug back. Of course – it was inappropriate.
But at the time, there was nothing else I could do. I immediately enact everything I feel. It’s taken a lot of training to stop doing this. Sometimes I forget to remember how other people feel, and afterwards feel ashamed to have been so inconsiderate; sometimes I seem to have magnified, rather than reflected, others’ anguish. It’s hit and miss. It’s certainly not a lack of empathy that I experience.
I’m generalising here, but with autism often comes a deep inhibitedness. Ask the ex-wife of the man who flinched whenever she touched him, and didn’t tell her he loved her until she left him. Or there’s my ex, who loved me – but autism is like a thick membrane. Sometimes you can’t reach through it until it’s too late.
The first few times, connection feels like a eureka moment transcending alienation. Once you’ve started, I think intimacy gets easier. But it can be very hard. Sometimes people need help, and I don’t think drugs should be overlooked. How important in life is it to be able to be close?
Much research has been conducted into the ‘love’ hormone oxytocin to assist emotional intimacy in people with autism. MDMA has also been discussed in treating autism, for obvious reasons. Research into LSD is currently being undertaken by Dr Robin Carhartt-Harris at Imperial College to treat some mental illnesses, with strikingly positive results. In a recent lecture I attended, he explained the effects of the chemical on the brain, which include a profound sense of connection and unity.
I believe LSD has helped me immeasurably to connect intimately. Autism carries a kind of mental rigidity, an inhibited ability to commune, a kind of stuck-in-self-ness. These are precisely the feelings LSD is spectacularly good at breaking down, though I can’t explain chemically how because I’m not a neuroscientist. Since the 1960s finished, LSD has become just a sitcom writer’s synonym for ‘wacky’, but I credit it with the beautiful, intimate beginning of my last relationship – both of us autistics, though our identification with the label varies. If we’re able to get over the stigma and take it seriously, I truly believe it has vast potential to help other autistic people.
The same for everyone
So what can be said about intimacy, women and autism? Categorically, nothing. If it was possible for me to generalise my experience to other women, this is what I’d expect:
- Communication problems, which can happen in any relationship. But when autistics misunderstand, it tends to go deep. Communication skills can, however, be improved.
- Balance. We struggle with it.
Ultimately intimacy is much the same for women with autism as it is for anybody else – everyone has to work it out for themselves.
Maybe you’ll marry, maybe you won’t. Maybe you’ll divorce at 40, maybe you’ll dance the funky chicken on your 75th wedding anniversary. Autism can’t tell you.
Robyn Steward is author of ‘The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum‘. She’s also a visiting research associate at University College London, an international autism trainer and has previously worked as a mentor with people on the autism spectrum.
Hannah Hayward lives, breathes, writes autism research and advocates for increasing the publics’ understanding of women on the spectrum, and indeed the greater well-being of all women. She is a PhD Candidate at the Institute of Psychiatry Psychology and Neuroscience at King’s College London.
Image credit: CC Alyson Hurt.