It is lunchtime on a Sunday in January. At a long table inside a delicatessen in midtown Manhattan, a group of young people sit together over sandwiches and salads. Most of them have their phones out. One boy wears headphones around his neck. But there is less conversation than you might expect from a typical group of friends: One of the boys seems to talk only to himself, and a girl looks anxious and occasionally flaps her hands.The young people in this group are all on the spectrum. They met through a program organized by the nonprofit Actionplay, in which young people with autism or other disabilities work together to write and stage a musical. Each Sunday, the members refine characters and the script, block scenes and compose songs—and then some of them head across the street to have lunch together. “You meet other people just like you,” says Lexi Spindel, 15.The members share a group text in which they call themselves the Wrecking Crew. A few months ago, six of the girls went to see the movie “Frozen II” together. And Lexi and Actionplay veteran Adelaide DeSole, 21, spent a long afternoon at the Spindels’ apartment over the holiday season. The two young women played games and watched “SpongeBob SquarePants” and “Kung Fu Panda” on television. “That was the first time my daughter had a friend over,” says Lexi’s father, Jay Spindel. “That never happened before Actionplay.”
From the very first recorded cases of autism, scientists have recognized that a lack of social interaction is a central part of the condition. In his 1943 paper, Leo Kanner described one autistic girl who moved among other children “like a strange being, as one moves between the pieces of furniture.” He interpreted the behavior of autistic children as being governed by “the powerful desire for aloneness and sameness.” For decades after, scientists and clinicians supposed that people with autism do not have friends and are not interested in forging friendships. “Until recently, there was an assumption that we would have found that the number [of friends] was zero,” says Matthew Lerner, a psychologist at Stony Brook University in New York.
A new line of research is forcing a rethink of those long-held beliefs. Autistic people overwhelmingly report that they want friends. And they have shown that they can and do form friendships with both neurotypical and autistic peers, even if their interactions sometimes look different from those among neurotypical people. This reframed view of friendship aims to acknowledge and encourage a better understanding of the social lives of autistic people. It recognizes the challenges autistic people face in creating close relationships, including difficulties in processing social information and dealing with conflict. “Nothing is impossible in terms of friendships for people with autism,” Lerner says, “but it does perhaps take a different route.”
Social connection is a powerful predictor of long-term physical and mental health. Having meaningful friendships—or lacking them—has an impact on our cardiovascular and immune systems, stress responses, sleep and cognitive health. People with strong social connections survive longer, on average, than those with poor connections, according to a meta-analysis of more than 300,000 people. Loneliness, defined as a mismatch between desired and actual levels of social connection, is as great a risk factor for mortality as smoking, the analysis suggests. Autistic people may not look lonely, because they often separate themselves from others—but they can feel lonely.
In fact, autistic children tend to be lonelier than their neurotypical peers, according to a study published in 2000. And this loneliness may contribute significantly to the high incidence of depression and anxiety among autistic adults. Having more and better friendships may ease the loneliness, but there is a caveat: The friendships might be distinct from those among neurotypical people.
“The benefits probably come from autistic people finding and being supported to find the relationships that work for them,” says psychologist Felicity Sedgewick of the University of Bristol in the United Kingdom. “I don’t think putting a neurotypical standard of friendship as the standard that autistic people should be made to achieve would do anything positive at all and would probably be very negative.”
READING THE SIGNS:
Research has shown that the idea of autistic people as friendless is a myth. For example, in a 2016 meta-analysis of 18 studies including 1,768 autistic children aged 8 to 12 years, Lerner and his colleagues showed that the majority of the children reported having a friend. “Most kids with autism think about a friend, or they have close acquaintances. I don’t think they’re friendless,” says Connie Kasari, a psychologist at the University of California, Los Angeles, who has studied autistic children in mainstream schools for years. Often, however, the quality of autistic children’s friendships is poor in terms of companionship and support. Their social networks are also often small, studies suggest.
One significant barrier to these friendships is neurotypicals’ conviction that autistic people are not interested in connecting with them. Appearing uninterested, however, is not always the same as being uninterested. An autistic child who looks uninterested in the games underway on a playground may in fact be overwhelmed by the noise and chaos. And an autistic adult who avoids eye contact may simply be trying to avoid overstimulation or to focus more intently on the conversation. And rhythmic, repetitive movements (hand-flapping, body-rocking and so on) are a way for some autistic people to manage their anxiety and uncertainty, not a sign of their low social interest.
“This issue about social motivation I found to be particularly pernicious, because if somebody has the assumption that another person is not interested in interacting with them, I think that’s going to affect how those two individuals interact,” says Vikram Jaswal, a psychologist at the University of Virginia in Charlottesville. “It may become a self-fulfilling prophecy.”
On the playground, for instance, autistic children tend to operate on the periphery. And for many, it is a dismal experience. “They weren’t rejected; they were ignored,” Kasari says. Autistic children also might not be able to find the children they know in the crowd. In a randomized controlled trial, Kasari and her colleagues trained three neurotypical children to promote positive social skills among the other children, whether autistic or typical. “These three little kids would go out on the playground,” Kasari says. “They were supposed to be little ambassadors during recess and help kids engage if they weren’t engaged.” That simple step led to better social networks for the children with autism. Encouraging playground staff to facilitate interactions by suggesting activities also helped. Kasari plans to investigate what combination of approaches works best for individual children: It might, for example, include gentle pushes from peers and adults, together with social-skills training.
Getting the children more engaged on the playground is a good starting point. “That’s the beginning of friendship. It’s saying, ‘We have to get you engaged and exposed to kids having fun for you to even develop a friendship,’” Kasari says. But forging a lasting friendship takes an extra ingredient: the sharing of emotional experiences. A longstanding model of friendship holds that typical children make friends by first engaging in activities together, such as playing basketball or sharing monkey bars. Deepening that friendship requires them to share emotions, either by talking about their feelings or by sharing a positive emotional experience.
Lerner and his colleagues have proposed that there are aspects of autism, including difficulty processing social information efficiently, that get in the way of this deeper phase of friendship. As a result, a child with autism may appear to find shared activities less pleasurable than a neurotypical child does. That perception then gets in the way of building a deeper connection. “It’s those subtle moments of coordination that allow for effective sharing, and if you’re out of sync, that might be the show-stopper for many folks,” he says.
Opportunities for synchrony—or at least understanding—may emerge more readily between two autistic people than between an autistic person and a neurotypical one. One of the first papers on friendships among autistic people appeared just last year. As a graduate student, Brett Heasman worked at a drop-in center for autistic adults and was struck by the extent of social interaction among the adults playing video games. He and his doctoral supervisor at the London School of Economics in the U.K. video-recorded pairs of autistic friends playing together and coded their conversational turn-taking.
They found that the conversations had far more of what Heasman calls peaks and troughs—shifts from connection to disconnection and back again—than in a conversation between two typical people. Periods of disconnection included long stretches of one person dominating the conversation or fragmented commentary unrelated to anything that had just been said. Tight conversational turn-taking and politeness would occur when a shift in the game required cooperation or a new person entered the room. Shared experiences such as having watched an amusing YouTube video could lead to engaged discussion and laughter. “There’s a lot of swinging and missing,” says Heasman, now a research associate at University College London, “but when they do connect, it goes out of the park.”
BEST FRIENDS:
Even when autistic people reach the deeper levels of friendship, difficulties may await. Noah Britton is a psychologist and teacher who makes up one-fourth of the comedy troupe Asperger’s Are Us. Like many other people with autism, Britton is uncomfortable opening up to other people. “You spend your whole life showing people various parts of yourself, [and] they get disappointed or confused or make fun of you,” he says. “That can be really hard.”
Most of Britton’s friends also have autism. “I have found for myself and for a lot of the other guys diagnosed with Asperger’s that I know, that we befriend other people with Asperger’s,” Britton says. “This is the group with whom we are most connected and similar, and so we are drawn together.”
Britton’s closest friends are the three other members of the troupe. When the group works and tours together, they have an easy camaraderie. What might look like obsessive or repetitive behavior to some—listening to the same song for hours, for example—provides moments of great unity for them, with the added bonus that they do not feel judged or shamed for their interest. “We were writing a new show, and while we were writing I wanted to listen to the same song over and over for the whole time,” Britton says. “We just listened to ‘Garden of Your Mind’ by Mr. Rogers for hours. And we were all equally excited about this.”
Even so, there are periods of upset when the members do not speak to one another for months, except about business. “We get very upset by stuff that doesn’t make sense to other people,” he says. “Sometimes we want to push people away.”
Conflict is also an area of difficulty for autistic girls and women, who cannot always easily manage or recover from it. Like most adolescents, 15-year-old Massina Commesso worries a lot about friendship and feeling included. For much of her childhood, Massina had a neurotypical best friend with whom she played games or painted her nails. But as they entered high school, the other friend pulled away, apparently out of embarrassment over some of Massina’s behavior. “She told me she didn’t want to invite me to her birthday party,” Massina says. (The other girl’s mother reportedly told Massina’s mother that her daughter “has to think about her reputation.”) Massina, who also has depression, was crushed and struggled to get past the rejection. “What am I living for?” she asked her mother at the time. “Nobody wants to be my friend.”
When it comes to friendship, autistic girls often behave more like neurotypical girls than like autistic boys, but with some differences, according to a 2019 study. For example, like neurotypical girls, they name only one or two close friends, but unlike them tend not to have a wider circle of casual friends.
Autistic girls not only experience more conflict than their neurotypical peers but also find that conflict harder to manage. “Autistic girls tend to have a very black-and-white approach to conflict,” Sedgewick says. “If something goes wrong, it feels very major; it is often catastrophic.” Sedgewick saw this firsthand when she worked with an autistic teenager who had fallen out with her best friend. “She became convinced that this person absolutely hated her [and] was going to hate her forever,” Sedgewick says. “She dropped [a class] that she shared with that child because she was so convinced that it was going to be awful.” Sedgewick says the friendship could perhaps have been saved, but the finality of the autistic girl’s actions made that impossible. Recognizing the existence and intensity of such feelings is a necessary step toward helping the girls involved cope with them, Sedgewick says.
FIND YOUR TRIBE:
Having friends who are also on the spectrum may skirt some of the conflict. Dena Gassner, 61, was diagnosed with autism at age 38. She has a stable of friends, both autistic and non-autistic, and works as a social worker. But like Britton, she finds it easier to connect with others on the spectrum. “You don’t have to explain anything to anybody,” she says. When Gassner goes out for dinner with her group of autistic friends, everyone in the group knows what to expect. “The people who can tolerate more sound or the people who brought their earplugs face the crowd. The people who cannot, face the wall,” Gassner says. “Those relationships are treasured for me.” In these friends, she says, she finds an almost organic give and take: “like one person inhales, and the other person exhales.”
To find this precious synchrony, though, autistic people must first find one another. Ian Aquino, 12, has a passion for trains, a common special interest among autistic boys. So his mother, Susana Montes, has been taking him to the Transit Museum in Brooklyn, New York, for much of his life. When Ian was 8, the museum introduced a social-skills program called Subway Sleuths for children on the spectrum; Ian did not miss a single Saturday. “In that environment, you really don’t see his differences,” Montes says. “It helped him connect with the other boys.” The children would play hide-and-seek and talk about trains, carrying on detailed conversations about how each one had traveled to the museum: “Did you take the A train or the 4 train?”
For some autistic people, friendships develop through experimental programs designed to support them. The goal of some of these programs is for participants not just to engage in behaviors that look social but to learn to behave in ways that help build relationships. Theater features in several of them, Lerner says, because it slows down the back and forth of conversation. “Theater is sort of breaking down and learning social interactions, and then responding to and connecting to others in a way in which everyone feels like they are a member of the group,” he says. Putting on a show together, with adult mentors to help, makes for what Lerner calls “lived successes” in the experience of friendship.
In another program Lerner developed, participants play a game called Gibberish, in which teenagers must interpret each other’s intentions without using real language. The point is not to get it right, he says, but to attend to what the other person is doing in a way that creates opportunities to connect. The games result in many in-jokes about the silliness that ensues. Other recreational social groups Lerner has launched make space for autistic people’s preferred interests. Rather than offering video games as an extrinsic reward for talking to someone, Lerner builds them into the curriculum. “We say, if this is something you love, that’s a chance to connect with each other,” he says.
Many of these ideas were inspired by a moment 16 years ago after Lerner established a small camp for children with autism called Spotlight that eventually inspired similar programs around the United States. On the second or third day, an 11-year-old boy ran up and tugged Lerner’s sleeve. “Matt, Matt, where did you find these kids?” Lerner recalls him asking.
“All over the place,” Lerner answered. “Everyone wants to come to camp, just like you.”
The boy turned to Lerner and said, “This is the first normal group of kids I have ever met.”
This story was originally published on Spectrum.
About 700,000 people in the UK are on the autism spectrum, according to the National Autistic Society
Five times as many males as females are diagnosed
Autism is under-diagnosed in females
“I'm Maura Campbell.
I was born with the social skills of a used teabag.”
“That’s how I described myself at the BBC Ouch storytelling event at the Edinburgh Festival Fringe last year.
I'm now 50. Six years ago I was diagnosed with Asperger syndrome, a form of autism. Like many women, this came after the diagnosis of my son, Darragh.
If it wasn't for this, I'd have gone through the rest of my life unaware of why I felt different.
As a child I'd felt as though everyone but me had been given a manual on how to behave around other people.
I was more comfortable around pets. Because I performed well academically and masked my anxiety, I flew under the radar.
People assumed I was just shy.
When my autism was identified, it felt like taking off a corset I didn’t know I’d been wearing.
I understand now that I have a brain that processes sensory and social information differently from most other people.
I can take better care of myself by managing my social energy and avoiding sensory overload. I have found a sense of identity.
Women do not need to fear a diagnosis - it may help explain so much. Whether to disclose it is, of course, a personal choice.
I am living the life I want to live.
I have an interesting and rewarding career in Northern Ireland's civil service alongside supportive colleagues who accept me as I am.
Since Edinburgh, I've continued writing about autism and disability and had several articles published. I've co-authored a book along with some of my autistic sisters from around the globe, some of whom have become close friends.
Most importantly, my diagnosis has enriched my personal relationships and made me a more confident mother.
Darragh and I have a special bond and he makes me proud every single day.”
“Keep scrolling to meet six other women who - like me - only found out they were on the spectrum when they reached adulthood.”
Interviews by Lucy Edwards
“Autism can be harder to diagnose in girls than boys.
I wasn’t diagnosed with Asperger’s until I was 23.”
Hannah
Cambridgeshire, 28 years old, PhD student
“I’m carrying out PhD research at Anglia Ruskin University into autistic females who may go undiagnosed.
Women and girls often have a natural drive to fit in socially, and so the symptoms they present with aren’t stereotypically ‘autistic’.
They can be more compelled to make friends - and so they learn to mimic non-autistic people.
For example, they might find making eye contact difficult. I know I did.
I’ve learned to count it out. I will look away for a few seconds and then back.
I’ve watched people carefully and studied psychology to degree level to get me to the point where I can now act quite naturally.
But learning that social repertoire has taken me many, many years.
When I was diagnosed, it explained quite a lot of separate things in my life that weren’t working out.
When I was younger, I had this really deep and rich fantasy life where I would just imagine situations. I would spend all day in my own world.
I couldn’t play with other children. I was absolutely useless at trying to get into the imaginary games of others.
At school, I suffered from depression and mental health-related issues and from the age of 14 I was taught at home.
During my A-levels I developed quite severe mental health problems and bad depression and anxiety.
Doctors focused on the depression, rather than thinking about a possible autism diagnosis.
At one stage they thought I might have borderline personality disorder (BPD). Looking back, that was quite frustrating.
I think it’s a gender bias. Girls are better socially and so can be diagnosed with BPD rather than autism.
I thought going away to uni would fix things. I went to York to do psychology. I made friends, but never really attended lectures.
The academia was never a problem, it was the way I’d go about my learning. I’d be hyper-focused on one project - for days - and would need a lot of time extensions.
It’s the same today with my PhD.”
“The breakthrough came when I saw an art therapist to help with my anxiety.”
“After several months of seeing her, she suggested I may have Asperger’s. It was from there that I worked at getting my diagnosis.
I’d done my dissertation on the condition and I didn’t think it was something that females - someone like me - could have.
Getting diagnosed gave me relief.
I now realise loads of women and girls have gone through - are still going through - exactly the same thing as me.”
“I used to think ‘I don’t seem to fit on this planet.
I don’t seem to be like other humans.’”
Jasmine
Greater Manchester, 26 years old, performer
“I genuinely thought I was an alien.
It sounds silly but that was the only thing my childhood brain could comprehend.
When I was a baby people thought I was deaf. But I wasn’t deaf, I just wasn’t paying attention.
Then as a toddler, it was like I was always thinking logically and the other kids were just being reckless.
Why would I want to get splinters up my bum from a wooden slide in the playground?
I got bullied badly in school. I guess people saw me as an easy target.
It wore me down. In class I always felt I had some kind of learning difficulty - some kind of mental blockage.
When teachers put me on the spot and asked me questions, my brain totally shut down. It needed extra time to process what they were saying.
I only decided I needed to find some sort of diagnosis when I got my teaching qualification from university. I just thought, ‘I’m sick of this. I know there is something wrong with me. I need to find out.’
I paid £50 to see if I had dyslexia. During the test the educational psychologist said I wasn’t dyslexic, but I did have dyspraxia [a condition affecting physical co-ordination].
She also said my results suggested I could have autism. That’s what gave me that extra incentive to get tested. I finally got diagnosed when I was 22.
Now, the majority of my friends are on the spectrum. It’s just easier that way.
I joined a creative group led by people with mental health issues. They ran comedy workshops - and that’s what got me into performing.”
“Doing my stand-up, I don’t feel as awkward as I do talking to people socially. It feels really natural to be up there performing.
I don’t have to talk to anyone specifically. I am talking at people. I think that’s the difference.
I’m not constantly thinking, ‘When can I chime in? When is my time to talk? Would it be rude if I said this?’
I take my dogs on stage. They give me extra comedy material.
I also feel calmer being able to stroke them while performing.”
“People remember the comedian with dogs strapped to her body.”
“I'm proud to be autistic.”
Amanda
London, 40 years old, teacher
“To be honest, I don’t really have any friends. People that I call friends are those I’ve met through work or on a Facebook group. But I don’t have any actual friends who I would go out anywhere with.
I don’t like people coming round my house. It’s like my little sanctuary. It probably sounds a bit weird.
My husband’s quite sociable and gets on with everybody - so he’ll go to parties without me. He lets me know they’re happening, but leaves the decision up to me. Ninety-nine per cent of the time I won’t go.
He used to get upset when I refused to go - but now he knows I’m not rejecting him. I just know I can’t put myself in a situation where I’d be very uncomfortable.
Both of my children are autistic. My daughter was diagnosed when she was 13. My son, who’s 15, got diagnosed when he was four.
I’d been reading up about Asperger’s ahead of teaching an autistic child at school. I realised the characteristics sounded a lot like my son’s.
He’d be on the carpet at school upside-down and facing the wrong way - not looking at people. The teachers didn’t think he was listening but he was taking it all in.
Over time I felt like I really identified with him. I could really understand his thoughts and I started to think, ‘Maybe I have Asperger’s as well?’
I would misinterpret things at the primary school I worked at. I was making mistakes because I didn’t get it. I got to a real low point.
That was when I decided to get an autism assessment. I got the diagnosis in early 2012. It was a relief.
‘Nothing is wrong with me, I’m just autistic,’ I thought.
From then on, I could understand why I struggled with social situations and why I couldn’t make and maintain friendships.
I started to accept myself as I am - because I hadn’t done that up to that point.
Where I grew up, I was the only mixed-race person I knew. It was a white working-class neighbourhood.
People obviously knew my mum was black but they didn’t know what that made me.
I didn’t know what I was either. I was made an outsider because of my race.
My mum’s from St Lucia in the Caribbean and when I went there they didn’t know what to make of me either. I wasn’t a black person to them. They used to call me ‘yellow girl’.
I think St Lucia is now starting to realise there are autistic kids - and that being autistic is not a bad thing. It’s taken a long time - they’re kind of where we were here in the UK about 20 years ago.
But even here, some communities are still struggling to identify and understand autism. That’s the experience from mainstream students I’ve taught, as well those with autism.
In some cultures, parents try to hide it because they don’t want their child to be seen as different.
In 2014 I started offering autism talks and training.
I wanted to help parents and children understand it’s OK to be autistic.
There’s nothing wrong with having the condition - it’s just how their brains are wired and how they see the world.”
“I love being a teacher.”
“Autism provides me with a number of gifts and talents.”
Claire
Fife, 35 years old, psychologist
“‘There’s no way I can be autistic and a clinical psychologist,’ I thought.
‘It’s incompatible because autistic people don’t have empathy.
So if I’m autistic it means I can’t be empathic.’
That’s the level of naivety I had at that time.
I had a bit of a light bulb moment one day in a lecture theatre during my psychology training. We were being taught about different conditions - including autism.
I thought, ‘Oh my gosh that sounds really like me. That is really freaky.’
But some of it didn’t fit.
We weren’t told about how it presents in women. We weren’t shown the diversity between the sexes.
I think there’s a great desire in girls to be social, and autism diagnoses are often based on male traits.
So girls and women say, ‘No. I don’t have many issues with wanting to be social. And no I don’t like car engines.’
By saying that, they’d lose points on the diagnostic measures.
There were missed clues when I was younger.
I went to high school in the US, and so some of the quirky traits that make me ‘me’, were not seen as being odd or bizarre.
They were seen as belonging to the Scottish girl - culturally attributed rather than individually attributed.
I also love fantasy fiction. I used read and read and read. I got lost in The Lord of the Rings. I would dress up as an elf. I went to Comic Con meetings.
That was my way of escaping.”
“I've bought some land with my savings.
I've put ducks, chickens, horses and goats on it.
I work with autistic people there.”
“Many of the autistic people that come to me have a lot of trauma. That trauma is from living in a neurotypical world, where they’ve been forced to be something they’re not.
I don’t see it as therapy because it’s not treatment. I see it as developing life skills.
It’s a process of developing trust. We just hang out with the animals - they’re like safe brokers. It’s not hugely grounded in theory, it’s just human experience and it works.
I was diagnosed at 32 - three years ago - and it has completely changed my life, and my identity, for the better.
I now have more self-acceptance of why I do the things I do. Autism provides me with a number of gifts and talents.
And so to erase the negative of something would also mean I take away all the positives.”
“The music has been through everything with me.
People just come and go.”
Anna
West Midlands, 27 years old, works with people with learning difficulties
“As a teenager, I couldn’t work out what was wrong. I felt out of place and teachers labelled me as ‘naughty’.
You get to the point where you don’t think you should be on the same planet as everyone else - because you can’t understand anyone and they don’t seem to understand you.
It’s like a spaceship has come down, dropped you off as a baby, but given you no idea what you’re supposed to be doing.
I got my diagnosis when I was 22.
My mum started working at Sheffield Adult Autism and Neurodevelopmental Service.
One day she came back with a big stack of books and said, ‘I want you to read them because I think you’ve got this.’
I soon thought, ‘This is me. Everything that has happened to me - this explains it.’
At first my doctor told me I had borderline personality disorder (BPD). And also, ‘It’s just depression, it’s just anxiety - take these tablets.’
But when I did get my diagnosis, I still felt no-one around me understood or wanted to understand.
I looked at other people with really good jobs and nice cars. I thought, ‘Why can’t I do that? Why do I have to keep getting ill and quit jobs?’
I still tried to force myself into full-time work in call centres. I just couldn’t do it. The bright lights and the noise - the sensory overload.
Now, I work with people with learning disabilities.
My partner's a barber. He knows a lot of people. He’s got loads of friends and customers. He’s in a band as well.
There have been social occasions when I’ve panicked and had to go home. I just find it difficult to go around a room and say hello to lots of people.
But now he always tells me what’s going to be happening in good time. Plus who’s going to be there and the start and finish times - so I can mentally prepare.”
“I've become transfixed by blocks of council flats.
It sounds so stupid telling people.”
“I just find it so interesting. I end up spending hours and hours looking at pictures of them. It’s mainly brutalist, mid-century buildings - the really ugly, imposing ones.
I also think about the sociology. How people used to live and how communities were formed.
I do have a couple of friends but as I’ve got older I’ve lost interest in making new ones.
At school I didn’t feel very connected to people, I felt stronger links to the bands I listened to - they were my friends. I know that sounds a bit weird.
The music has been through everything with me, whereas people just come and go.”
“I want to be a university lecturer.”
Sophie
Derbyshire, 23 years old, studying for master's degree
“I got diagnosed just over a year ago - when I was 22. But it was at secondary school when I first thought I might be autistic.
My brother was diagnosed with autism when he was five and he attended a specialist school. I’d seen bits of his behaviour in myself, which made me wonder.
I think that in some cases, females learn to mimic behaviours to get them through life.
I think that sometimes, autistic girls copy social behaviour better than boys do, which is maybe why they aren’t diagnosed as early.
I’ve completed my degree and teacher training at Derby University. I am currently doing my master’s in inclusion and special educational needs and disability (SEND).
While on a teacher training school placement, my mentor spotted some aspects of autism in my behaviour.
For example, sometimes I would take things too literally, or I would sit on my own in the staff room and not socialise.
Back at uni, my lecturers said they’d picked up on similar things - so I went to get diagnosed. I paid £50 and the university paid the rest for a three-to-four-hour appointment with a psychologist.
When I received my diagnosis, I felt it explained a lot, which was good. However, I feel that having a label has both benefits and downfalls.
My autism mainly affects my sociability and expression - and I also have high levels of anxiety, particularly when there is change to my routine.
I tend to get obsessive over things like TV shows. I can watch them for hours and know the script by heart. I also have to pre-plan what I’m going to say and don’t like to be interrupted.”
“I now get more help from the university.”
“I get a taxi to and from classes as public transport causes me anxiety. I can claim back expenses on printing paper and ink as I hate reading things on a screen.
I also get specialist mentoring support to help with any worries and to work on my interview skills.
It was good to tell the other people on my master’s degree course that I'm autistic. There are only about five of them so I felt comfortable explaining. I wouldn’t have told a large class, like the 80 or so people who were in my undergraduate class.
I want to become a lecturer eventually and it would be wonderful if that was here at Derby.”
Girls On The Spectrum Often Go Unnoticed
By Rita Giordano
PHILADELPHIA — “Weird.”
Nichole Lowther has heard the word her whole life.
Bright, even charming, she nonetheless never felt comfortable in groups or making small talk. A hard worker, she had a tough time finding or keeping a steady job. Could it have been her unvarying wardrobe, her lack of eye contact, her encyclopedic knowledge of “Star Trek?” Then there were the times in public when a loved one would pull her aside and plead, “Be normal.”
But a few years ago, when her son Matthew, now 6, wasn’t meeting developmental milestones despite early intervention services, Lowther took him to a specialist. The doctor noted certain telltale behaviors of autism — walking on his tiptoes, rocking, wiggling fingers near his eyes.
“I said those weren’t autistic behaviors, because I do them,” Lowther, of Burlington County, recalled telling the doctor. “She said, ‘Have you ever been tested?'”
So, at age 42, Lowther was tested. Textbook autism, she was told.
“It was such a relief,” Lowther said. “I was like, ‘OK. Now a whole lot of my life makes sense.'”
For women and girls living on the autism spectrum, diagnosis too often comes late, if at all. Though boys with autism spectrum disorder (ASD) — the country’s fastest-growing developmental disability — are estimated to outnumber girls by 4-1, experts now say that may be because many females are overlooked, their symptoms dismissed or misread.
“If girls are chronically diagnosed later than boys, they’re missing that most valuable treatment time,” said Diana L. Robins, head of the A.J. Drexel Autism Institute’s Research Program in Early Detection and Intervention. Research has shown that children who get treatment before age 2 or 3 show the most improvement.
But for many females, diagnosis often doesn’t come until they are well into adulthood. That can mean decades of social rejection, depression, anxiety and unrelenting confusion.
“We’re not doing a great job of identifying all the females,” said Thomas Frazier, chief science officer for the advocacy organization Autism Speaks. “We’re going to have to identify females better, particularly females who are more cognitively able, and then do studies on them to see what the differences look like. The fact of the matter is, it’s even hard to study right now” because the subjects are so limited.
Female autism often expresses itself differently. Recent studies suggest there may be genetic differences, even brain differences, between males with autism and females. Some research indicates the physical makeup of the brain in females with autism may be more like the brain of neurotypical males than males with autism or neurotypical females.
ASD, though it covers a wide range of traits, is characterized by social and communication challenges, repetitive behaviors and sometimes sensory hypersensitivity. Many professionals — doctors, teachers, counselors — are used to looking for autism as it appears in boys. But females on the spectrum hide in plain sight. They go undetected because their behavior may conform more to social norms — not enough to be fully accepted, perhaps, but enough to elude detection.
They may be glossed over as merely shy. Or they may be quite verbal, even chatty, but they are confounded by the complexities of the neurotypical social world. Seeming directness may be misread as hostility.
Some have been told they can’t have autism because they love writing and language, not science or math — a long-standing stereotype that has been debunked. Many females with autism favor functional clothes or limited colors; one of Lowther’s friends jokes about her “prison jumpsuit” wardrobe of solid neutral tones. But some admit to studying fashion so they can fit in, similar to lower-functioning children with autism who echo others’ words they don’t actually understand.
Girls may exhibit autism’s repetitive, narrow interests, but theirs may be less pronounced than boys’ or more like neurotypical girls. Boys with autism may become fixated, even obsessed, with one cartoon character or a bus schedule, but what’s so odd about a little girl who sleeps with a bed full of plush animals? What may go unnoticed is that the little girl never plays with those stuffed animals.
Yet those girls can grow into successful women who view their difference as a gift. Temple Grandin is an internationally known animal-behavior expert and autism advocate. The poet Emily Dickinson also is believed by many people to have been on the autism spectrum.
“They are very often incredibly creative individuals, almost like Renaissance people who are extremely bright,” said Dania Jekel, executive director of the Autism Asperger Network (AANE), a national advocacy group. “On the other hand, the anxiety can be completely crippling for them, especially when they are misunderstood. People see a verbal, bright woman, and the expectations for that person are way, way high.”
Like many bright young people, Nomi Kaim was excited to be venturing forth in life when she enrolled in Bryn Mawr College in 2003. The campus was a long way from her New England childhood, where she was bullied, called a “social retard” and fell into a depression she couldn’t shake.
But Bryn Mawr only lasted a year. The work wasn’t so hard, but there was too much of it for her to process. Her roommate hated her. There was too much noise everywhere. Her depression was crushing. When she went home, she was hospitalized, one of many times in the years to come.
It was around then, just before her 21st birthday, however, that her issues finally got a name. She was diagnosed with Asperger’s syndrome, a high-functioning form of autism.
“I felt this great sadness,” she said. “I felt this sense of dread and humiliation.”
Eventually came acceptance. She hasn’t been able to hold a full-time job, but she volunteers at AANE, counseling other women.
Kaim, 35, thinks that if her autism had been detected when she was a child, if she’d gotten help early enough, her life might be different. She might have finished college and become a writer. But it’s more than that.
“My self-esteem might have been preserved,” Kaim said. “I might have felt less afraid of the world and not so alone. I felt I was defective.”
Depression and anxiety frequently accompany people with ASD but experts find that depression is especially prevalent among females beginning in adolescence. Eating disorders are also common. So is post-traumatic stress disorder, as well as emotional or sexual victimization.
“It’s a major issue because women on the spectrum have a hard time gauging the motives and depth of feeling from other people,” said Anthony Rostain, a professor of psychiatry with Penn Medicine and an expert in adult development disorders. “In the desperation to feel appreciated, they’re often taken advantage of, and sometimes even more seriously mistreated or abused.”
Jessica Brown, 36, of West Philadelphia, was 30 years old before she was diagnosed. Even then, she recalled, one man she dated would try to pressure her to do things sexually she didn’t want to do. He’d say, “Oh, that’s because of your autism.” Looking back, she said, “it felt like a form of gaslighting.”
But she had always felt like an outsider. Growing up in a black, middle-class family in the largely white, suburban town of West Chester, she often felt the odd one out.
As a girl who didn’t understand the neurotypical world’s social cues, Brown was told she was mean, even a bully. A college honors graduate, she nonetheless had trouble keeping jobs because of social missteps, rather than work performance.
Now, she works with children with special needs. She finds joy in reaching those others cannot — like a little boy deemed nonverbal who piped up and said, “Jessica. Hi.”
Brown is learning her own abilities.
“I can read raw emotion really well,” she said. “I’m not great at the social stuff, but I can really motivate kids. It’s easy to let them know I love them.”
Self-knowledge has helped Lowther, too.
Like a lot of people with autism, she finds social media a blessing: “I join groups that are focused on things I like, and I can say things without being labeled a freak.”
After-school programs for nonverbal children like her son have proved scarce, Lowther said, so they find their own adventures. Sometimes, he melts down in public, she said, and people stare. “So I start acting like a dinosaur to take the attention off of him. There’s something to be said for a 40-year-old woman running around the Moorestown Mall acting like a dinosaur.”
At times, she still needs her noise-canceling headphones: “Some sounds I can feel in my bones,” Lowther said. Adults still get annoyed by her behavior, but at least now they know why.
“To be honest, knowing that my son and I are on the same journey is cool,” Lowther said. “He goes to therapy to help with behaviors and speech, and I think that they’re helping me, too, because I sit in on them.
“Maybe I’ll never be ‘normal’ to most people, but they don’t seem to enjoy themselves very much. I have my husband and son, and I find my own joy. I’m never lonely in my imagination. There’s always something to do there.”
© 2019 The Philadelphia Inquirer
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