Adolescence Social relationships

Where do I begin?!

Take a socially awkward, quiet tomboy who doesn’t relate to her female peers and throw a load of hormones at her. That’s not going to go down well!

Puberty and adolescence are frequently a difficult time for all young women, but the combination of adolescence and autism brings it own set of challenges. Families talk about not knowing from one day to the next whether the young person’s behaviour can be best explained by autism or their age (Nichols et al. 2009).

Friendships change, expectations change, bodies change and feelings change. It’s a lot to handle for someone who takes a while to get used to change, especially when she may not be ready for these changes and just wants to carry on building Lego® and pretending to be a pony (meanwhile her classmates are swooning over some pop star and obsessing over what to wear).

At some point in sixth grade (when I was about 11), many of the girls in my class became huggers. They hugged when they met each other and when they said goodbye. They hugged when they passed in the hallway. They hugged when they were happy or sad. They hugged and cried and squealed with excitement and I watched from a distance, perplexed. What did all this hugging mean? And more importantly, why wasn’t I suddenly feeling the need to hug someone every 30 seconds? (Kim in Hurley 2014, p.24)

On the whole, women in my survey who had been through adolescence, often without a diagnosis of autism, did not have a good word to say about this time in their lives. A few reported positively but they were often those who had successfully located a like-minded oddball or a kind neurotypical pal who gave them the acceptance that they were desperate to find; alternatively, they were the type of girl who was able to live quite happily without that acceptance.

Women were asked to describe their teenage years, and the following examples are typical of the emotions remembered:

Locked in. Caged and ultimately restricted. It’s a period of my life that is a relative blur since it was so uneventful, when for most people it’s a monumental time of self-discovery, exploration of the world at large and forging new directives in the way of career and life perspective etc. (Woman with autism)

I often felt as if I was peering in – looking at what others were doing, constantly observing actions and reactions. And so I learned to ‘act normal’; and judging by people’s reactions when I say I’m an Aspie, I’m a very good actress. (Woman with autism)

Social relationships

In the earlier years, I think I was too oblivious to social norms to notice how different I was or that I wasn’t ‘doing it right’. But the older I got, the more I started to feel different and anxious to be liked. (Woman with autism)

Girls with Autism Spectrum Disorder (ASD) have less severe social and communicative behaviours than boys with ASD at a young age. However, as adolescents and adults, girls have more social difficulties, particularly with peer relationships (McLennan et al. 1993). The prevailing view is that the peer activities commonly engaged in by girls and women are more socially and communication dependent, compared with boys, whose relationships remain largely topic- or activity-based (sport, special interests) and who, as a result, often have fewer verbal and non-verbal interpretation requirements. Rudy Simone describes this change in her own comparative social skills:

I had many friends […] until adolescence. All at once, my idiosyncrasies became very uncool, almost overnight. My social deficits [Rudy’s italics], which prior to that point had just been differences, became glaring holes in my persona. (Simone 2010, p.28)

Stories of trying hard to fit in – and failing – were frequent in the responses. There was study, mimicry and effort involved to solve the social puzzle and gain entry into the arena of inclusion and acceptance. Liane Holliday Willey describes her own ‘assimilating behaviours’:

I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating. (Holliday Willey 2014, p.29)

Other difficulties arose from not only failing to understand the signals and rules governing teenage friendships, but also from the impact of making another person the object of a special interest and becoming unusually fascinated by and focused on them. The young woman with autism may seek exclusivity with the ‘friend’ and be confused as to why he/she would want to spend time with anyone else.

I thought that Connie was beautiful and so clever to be able to play the piano. I followed her everywhere, and it was difficult to understand why she wanted me to go away at times, or why she wanted to be with other children and not me. (Lawson 1998, p.58)

As they get older, most girls with ASD perceive themselves as ‘different’ (Holliday Willey 2001; Stewart 2012), perhaps when comparing themselves directly with the social profiles of their same-gender peers. Many of the women in my sample did not receive a diagnosis until many years later, yet still recall this awareness.

I feel like I have a different operating system [with] a very good emulator running on top of it. The few people I tell are shocked to find I’m autistic. I can fit in, I can behave like others up to a point, but it isn’t me and doesn’t fulfil anything within me. It’s empty and meaningless. (Woman with autism)

I was very aware that I was ‘different’ and didn’t fit in and I had no wish to fit in as I couldn’t see what was so great about being NT [neurotypical]. I felt rejected as my attempts to bond with peers frequently failed and I felt like my parents were ashamed of me as they thought I was weird and an embarrassment. (Woman with autism)

What also comes across from some of these women is a paradox that many people with ASD seem to struggle with: a contempt for the superficial content of the relationships of their peers, coupled with a desire to be accepted by those same peers. In the responses, there is also the relief that has come later in their adult years that they no longer have to be part of this teenage world that seemed so alien. It seems that the teenage years bring all the stress and confusion of mature social relationships but none of the adult choices of being able to opt out (due to having to endure school).

On being told by her father to ‘make friends’ with a girl he had introduced her to, W. Lawson describes her strategy:

She asked me lots of questions and to most of them I replied ‘yes’. It seemed the safest thing to do; in my experience, when one answered ‘yes’ people were happier. (Lawson 1998, p.17)

I made a lot of efforts to fit in, but they all failed and by the time I was in my late teens, I’d given up. I’d known I was different since very early childhood. To be honest, these days I care very little about fitting in. I see the NT world and culture for what it is and I have little interest in selling out to be a part of it. (Woman with autism)

I tried to wear the right clothes or be interested in things others were to fit in but I never quite pulled it off. It’s a bit like trying to speak another language that I’m not fluent in – I can get by for so long but eventually I’m always found out and my ignorance is revealed. (Woman with autism)

Opinions on social relationships, particularly with other girls, are a clear indicator that these young women thought and felt differently to their peers. They had different agendas, different interests and different requirements from a friendship. Some were bullied, some were excluded and some were permitted to exist on the fringes.

Girls in real life are not something I enjoy being near, especially loud, squealy, hair-and-make-up high-schoolers. (Woman with autism)

One time, aged 13 a girl did an experiment on me by calling me a bitch. I was confused because she was one of the few who was normally nice to me, or at least not horrid, and then she said, ‘You don’t know how to react do you?’ She’d clearly noticed that I simply did not have a response in my repertoire to such things. (Woman with autism)

Others seemed not to rankle and engender the displeasure of their female peers, either by being invisible and/or of no interest, or by being endearing and tolerated to some degree.

As a teen I was quite lucky – I was ‘allowed’ to hang onto the edges of two girls who had been best friends since they were young. (Woman with autism)

I was a tomboy, did not get into make-up, but wished I could be more like the other girls. I loved motorbikes, got one and learned how to take it apart and fix it. (Woman with autism)

For young women today, the Internet appears to offer a space for developing friendships based on interests and not requiring the complexities of face-to-face interaction – no-one cares if you’re wearing the right clothes or not making the right facial expressions. Some younger women said that all of their interactions were Internet-based and that they had no in-person social contact at all. Video-gaming was important to several of the younger respondents, and their involvement in these communities had provided them with friends.

I have friends on the Internet. They are a mix of male and female, and points in-between. I talk to them on a varying basis, always one-to-one. I would like more friends, but I do not wish to burden them. (Woman with autism)

The additional expectations of young women with autism in terms of social ability, self-care, education and independence may lead to more visible mental health difficulties during this time. They may develop obvious signs of anxiety, self-harm or eating disorders, which may not be linked with autism by professionals as this may not have been diagnosed yet. Some of these behaviours can be incorrectly attributed simply to puberty and treated in a way that does not address the underlying stress involved in living with autism.

As a teenager and young adult I did what was expected of me in order to fit in. I went to night clubs, which I hated. I went to guide camp, which made me ill as I was so distressed. Even after that I went on holiday to Spain with a school friend just because it was the expected thing to do. I came home half-way though and spent about a year recovering as my mental health was affected so badly. (Woman with autism)

It feels lonely, but at the same time, I know I should never burden people with my issues, and that I should tackle everything alone. If anything, it’s the only way I can prove myself to be as good as anyone else. (Woman with autism, aged 18 years)

Characteristics

Some of the typical diagnostic characteristics of ASD can be less obvious as a girl gets older – this may particularly apply to more intellectually able and self-aware individuals who learn what is required and what is deemed unacceptable. Young women with autism, as we have heard, are often excellent social anthropologists, studying the behaviours of others in order to predict more accurately what neurotypicals will do, and also to imitate this behaviour themselves in order to receive either social approval, or at the very least, slip under the radar to some degree. They are not always entirely successful and their experiences can alert us to what we should be looking for in undiagnosed young women.

Communication and social understanding

I was only taught how to make eye contact soon after I turned 17. Before that, because I didn’t know the correct way, I would simply avoid doing it. (Woman with autism)

Socially, I suspect I came across as cold and aloof to people, which is a shame as I’m not like that, but I don’t pull the faces and do the gestures that NTs are so taken with, so I am judged negatively before people even bother to get to know me. (Woman with autism)

My teens were full of ‘what you f**king looking at?’ by other girls. This was incredibly confusing and frightening to me. Obviously something in my facial expression was upsetting them, but I really don’t know what. (Woman with autism)

Interests

Intense interests exist throughout the lifetime of people with ASD, but they can change and develop with age. For young women in my sample, reading still featured heavily, as it had done when they were children. Drawing, writing, sewing and collecting were all reported. The interests mentioned are solitary pursuits and no-one mentioned sharing these interests with peers (other than video-gaming, which was remote interaction rather than in the same room). People still formed a significant part of the young women’s interests, either through fictional characters or obsessions or crushes on people known to them. The solitary nature of these interests could lead to the assumption of shyness, isolation, depression or social anxiety – all of which may be the case, but which, equally, may mask underlying autism.

I was into music big time. I preferred music from before my day and disliked the stuff my peers were into. During my teens I liked rock and roll music from the 50s and 60s and would play my favourite tracks over and over again; I knew all the words and all about the artists. (Woman with autism)

In my teens I was obsessed with the Royal Navy. Then I think my obsessions were mostly people – partners and the future I hoped to build with them. I also spent several years obsessed by cricket, both playing and watching. (Woman with autism)

I have spent much of my teenage and adult years reading fiction, playing computer games and watching fiction on TV. Many times I’ve felt closer to fictional characters than real-life people. (Woman with autism)

Coping with change

I came home to find we had a new sofa and the old one was outside in the yard. Again I went mad and went and sat on the old one in the yard, claiming I was going to live outside. Again I didn’t understand my reaction, but it was very strong and I was horrible to my mum about it. (Woman with autism)

Despite being often outwardly capable, most of the women I asked reported life-long issues with changes to plans and routines. As teenagers, these could result in outbursts and an anxious need for reassurance or detail, which may be attributed to typical teenage behaviour, but with hindsight, may be explicable through the lens of autism. Even small changes to environments or plans could cause enormous stress that the young woman with autism would not be able to articulate or put into perspective at this time in her life. Anecdotally, it is often reported that women with autism are more likely to internalise the anxiety and stress they feel around change, not wanting to draw attention to their inability to cope with the situation. This leads other people to believe that they are coping, when in fact they are not. Repression of emotions and the effort involved in hiding them from others can cause long-term mental health problems, and eventually the facade crashes as the curtailed stress has to come out.

Independent skills

Many of these young women were extremely capable and independent, further masking their potential difficulties. They usually behaved well and did what was asked of them to the letter, being seen as very mature and sensible. Adults tend to like children who behave like little adults, perhaps not appreciating that a child behaving in this way is not always a good thing!

I was conscientious and responsible. (Woman with autism)

I see the world as a puzzle to be solved, and meticulous planning means I function well, though with more stress. (Woman with autism)

I manage by means of a complex schedule and a series of lists. My short-term memory is terrible and without this, I would not be able to function. (Woman with autism)

Others found expectations of their abilities impossible to meet, sometimes hiding these difficulties and finding their own ways to cope.

I struggled to cope with public transport and used to walk the two miles each way to school rather than get the bus. I don’t know why I found it difficult – probably just the compulsory interaction with the bus driver and my peers on the bus. I just couldn’t cope with it. I was allowed so little time alone that the 40-minute walk to school and back, alone, was a relief. (Woman with autism)

Periods and puberty

Understanding and knowledge about matters involving physical and hormonal changes during puberty may be more limited in this group of girls due to their potentially limited peer group, which is typically the main source of this information for most young people. Support to ensure that young women with autism receive this information and have the opportunity to ask questions is essential. Shana Nichols et al. (2009) have written Girls Growing Up on the Autism Spectrum, a comprehensive guide to supporting girls in dealing with all issues relating to puberty and adolescence. Witnessing your own body changing without any understanding of what is happening can lead to anxiety and fear about something that is perfectly normal. A girl with autism may not feel able to talk to anyone about her worries as she may be afraid that there is something wrong with her.

At about the age of 11, I found a magazine in the newsagents called the Mizz Book of Love. This magazine was a treasure trove of factual info about puberty, sex, STI [sexually transmitted infection], pregnancy etc. Thank God I found this magazine. I was not shocked at puberty because I knew what to expect; in fact, I was excited and happy to change into a woman. I am certain that educating young girls on the spectrum in depth is essential. I already discuss the facts of life, including sex abuse, with my six-year-old daughter – she can ask me anything and I will tell her. I feel very strongly about this. She needs to know. (Woman with autism)

I was 12 when my periods started and I hated it with a passion. Mum hadn’t told me anything about them and I didn’t have other girls to tell me, although the school did a talk about it. During the talk I was pretty horrified at what I was hearing and I think I prevented myself from taking it in. I remember they passed round a sanitary towel and I refused to touch it. I think I concluded that ‘No thank you, this stuff wasn’t going to happen to me!’ (Woman with autism)

Keeping clean, changing sanitary protection and avoid embarrassing mishaps are skills that may need to be taught to young women reaching puberty. Liane Holliday Willey (2012) describes her frequent ‘accidents’ with forgetting to change tampons, resulting in blood stains on furniture. Some young women don’t know when they should start to wear a bra or how to have that conversation with their parents or carers. Wearing a bra takes some getting used to, particularly if you have sensory sensitivity to touch. It can be unbearably uncomfortable. Nichols et al. (2009) discuss the issue of bras and how to address the concept. Some women with autism continue into adulthood choosing not to wear a bra, which is a personal right, but one that comes with potential consequences. I worked with a young woman with very large breasts who did not see why she should wear a bra, but was not aware that her bosom was very obvious and that people stared at her and made negative comments. Her decision may also have had implications for her physical health as she had no support for her breasts and her back. The decision was hers to make, but she needed to have honest advice about other people’s perceptions and any health implications in order to enable her to make an informed choice. This was to continue to not wear a bra as she didn’t care what people thought. Some women with autism do not wish to conform to societal norms that they feel do not fit them and should be supported to do so once they know all the consequences.

Hygiene is another area that takes on greater importance from the onset of puberty, with some young women with autism not really understanding or being concerned about the health and social impacts of being dirty and smelling bad. The consequences and actual skills of self-care may need to be taught in detail. It cannot be assumed that the individual with autism knows how much shampoo to use, how to rinse it out and what the purpose of deodorant is.

Still not great with personal hygiene, I mostly wash in order to stop getting sore or so that other people don’t think I’m stinky. Being stinky doesn’t really worry me. (Woman with autism)

Overall, we can conclude that the teenage years are a time of enormous change, development and learning for young women with autism. All young people find these years difficult at times but the social exclusion and changing nature of friendships, along with increased expectations from families and teachers, mean that young women with autism are faced with additional challenges.