Infancy and Childhood

Parents whose daughters receive a diagnosis of autism later in life often say that they ‘just knew’ something was different about their child when she was a baby, or certainly often from a very early age – well before any current formal indicators of diagnosis could possibly be used. If the child has a language or developmental delay, it is more likely that the diagnosis of autism will occur sooner rather than later. The child will alert professional attention due to their lack of reaching early childhood milestones, rather than necessarily any specific autistic behaviour. The autism diagnosis may come at the same time – sometimes as young as two years of age, but often the conclusive diagnosis of an Autism Spectrum Disorder (ASD) is reserved until an older age to ensure that the assessment is correct and consistent over time and natural development. For families with no knowledge or understanding of autism, this can be a huge shock and feel like the end of the world at first.

We had our suspicions very early on, when A was a young baby, that something was amiss. She didn’t smile until much later than her peers, could not instinctively play with peers, [was] very socially awkward, [and had] poor gross and fine motor control etc. But she was very bright verbally and taught herself to read when she was about three. We knew nothing about autism then and it seemed like a horrific condition. A teacher suggested it when A was about six and we threw up our hands in horror. (Parent of girl with autism, diagnosed aged 6 years)

For children who do not have any learning disability or language delay, a diagnosis of autism would not necessarily be an obvious conclusion under three or four years of age and therefore it is to be expected that diagnosis for these children would come later. This seems to be particularly the case with girls. One study found the average age of diagnosis in girls to be eight years of age (Eaton 2012). Giarelli et al. (2010) found that boys were more likely to be given an ASD diagnosis earlier than girls, despite both sexes being identified as having similar language and developmental delays at approximately the same age. The girls were initially given a diagnosis of another condition, meaning that the commencement of appropriate support was delayed. In my participant sample, the earliest diagnosis was at four years of age for a girl with a learning disability, while others without a learning disability were slightly older. It is encouraging to learn that some clinicians are identifying ASD so early in these girls and clearly have a good understanding of how to interpret the diagnostic criteria for the female population.

For the parents of these children there is often not anything ‘wrong’ with their child that they can define or that requires medical assistance, but more a nagging sense of something being different that they can’t quite put their finger on. It might be that play is different, or that the child appears unusually absorbed and in a world of their own (Riley-Hall 2012). This is particularly the case for parents of girls with autism as their behaviour may just be attributed by others as ‘shy’ (Kreiser and White 2014) in a way that often isn’t the case with boys. In my experience, these parents are frequently correct in their intuition, but can often be assumed to be over-anxious or imagining things. Obviously, it is not currently appropriate to make a very early autism diagnosis in all cases, but it may be necessary to note the observations of parents voicing concerns of this nature as at some point in the future this could potentially provide valuable supporting evidence for an autism diagnosis. One girl even had the insight to diagnose herself!

By age eight she was questioning if she was on the autistic spectrum herself. We had already been asking (professionals) and had been fobbed off with the fact she was a girl!! Her brother started going through the diagnostic process when she was eight and he was six. By the time she was nine he had been diagnosed with AS [Asperger Syndrome] and she was convinced she was AS too […] (took another 12 years!). (Parent of girl with autism)

Early childhood indicators

When considering typical expected behaviours of a child with autism, parents of girls and women with autism give us an insight into their world in these early years. Some of these behaviours are not gender-specific and will also be seen in boys, particularly at this early stage, but expectations of how girls ‘should’ be may impact on how these pre-diagnosis age behaviours are interpreted. It is important that autism remains on the radar when considering the causes of certain behaviours in these girls. We should remember that mental health or more general global delay-type diagnoses are known to be more readily given to females when autism may have been more appropriate (see Chapter 1). Parents’ observations about their children’s behaviours are frequently made with hindsight; they may have caused concern at the time, but parents often fear being told they are paranoid or over-anxious and keep these niggles to themselves. On reflection, the parents questioned had all noticed early atypical behaviour in their infants and toddlers, which later contributed to the picture they now know to be autism.

Typical very early indicators and parental anecdotal reports relate to characteristics and behaviours that include the following:

•The parent feels a sense of detachment from the baby or young child – often this cannot be further articulated by the parent; it is just a feeling of the baby or child ‘being in their own world’.

•Atypical eye contact (either unusually limited or staring).

•A lack of attention paid specifically to people and faces – interest in people is not prioritised over objects.

•Limited interest and/or response to people stimuli (smiling, voices, peek-a-boo games).

•Limited reciprocal social facial expressions and social cues (smiling, pointing).

•Limited seeking out of people and responses from people.

•Very placid, silent and peaceful babies – ‘It was spooky, was almost as though she was a ghost just lying there silently without moving.’ (Parent of girl with autism)

OR

•Very anxious, distressed and clingy babies – ‘Intense emotions, especially distress, and an inability to be comforted by affection.’ (Attwood 2012)

•Sensory preferences and intolerances:

small temperature tolerance range, which can result in febrile convulsions

clothing – texture and touch

physical touch – distressed by being cuddled

specific strong food preferences and dislikes

food and other intolerances and allergies.

Professor Tony Attwood has developed a Girls’ Questionnaire for Autism Spectrum Conditions (Attwood 2013) for use by clinicians with parents of girls seeking diagnosis, to highlight female-specific characteristics and ensure that a full and accurate profile is provided. This tool is not a diagnostic test for autism in its own right but rather a supplementary information source asking the right questions to get the right information. The questions include items such as toy preference, imaginary friends/animals, adopting personas in different situations and responses to social errors. All of the items on Attwood’s screening questionnaire were evidenced in the girls and women questioned for this book and are aspects of autism not usually considered indicative in traditional diagnostic measures. Tania Marshall, a specialist female autism practitioner, has also developed a profile of female traits for both girls and adult women which reflect a broader range than those typically measured diagnostically (Marshall 2013) and also mirrors those discussed here.

As we have learned, girls with an ASD can often do a great job of rote learning and mimicking (typically) intuitive communication cues in order to pull off an effective social performance. However, at a young age, it is unlikely that this learning will be fully embedded and so any difference in social engagement should be evident. It may not be until the child joins a nursery or playgroup that the parent realises that their ‘quirky’ child is really quite different from her peers. Preferences and behaviour, which in isolation at home are easily managed, may not be so easily accepted in a room full of 20 toddlers. It also may not be until the start of group interaction in formal play settings that the child begins to struggle with the more frequent and numerous social interactions and requirements. Therefore, a child who displayed few difficulties at home may suddenly appear much more affected by potential autism due to the change in her environment and the new expectations placed on her – and this may be particularly the case for girls who may be encouraged towards pretend, group and imaginative play in these settings.

Participants in the research for this book were asked for examples of early atypical behaviours that reflect behaviours associated with the autism diagnostic criteria, along with those identified as being potentially more indicative of female autism. The list of topics featured here is not exhaustive and is not a comprehensive list of diagnostic characteristics. They are topics that came up most frequently in my research as being particularly pertinent for these girls and women.

Non-verbal communication

Difficulties with the expression and reading of non-verbal signals, such as eye contact, facial expressions, tone of voice and body language, are presumed to be the more obvious and visible characteristics of autism. It must be remembered that these are reciprocal skills in typically developing children, which result in not only the ability to ‘read’ other people, but also to present the appropriate non-verbal signals to enable other people to ‘read’ them. The child with autism may not only fail to pick up on cues from others and respond to those, but also to make the necessary facial expressions to transmit their own messages outwards to be received by others. Thus, a child who makes few facial expressions, or ones that appear slightly out of context in the situation, is certainly a candidate for consideration of autism in the same way as a child who does not actively respond to cues.

On holiday aged eight, a kindly hotel owner observed that I never smiled and asked why I always looked so worried. I panicked as I didn’t know what to answer, so I came out with the first thing that seemed reasonable to be worried about which was ‘the ozone layer’. I must have heard about this on the news. (Woman with autism)

Eye contact was mentioned by parents of girls with autism as being noticeably different in infancy in their daughters. This is something that is typically observed in babies within the first few weeks of life (assuming there are no physical visual problems). Eye contact differences in individuals with autism can range from little or no eye contact through to staring. The difference for a person with autism is in the intuitive understanding of eye contact as a means of reciprocal communication (and therefore not discerning any function in looking at someone’s eyes), a difficulty in attending to more than one sensory input at once, or simply an intense discomfort at the intensity of looking into another person’s eyes. As an adult, a person with autism may observe that eye contact is a social norm and teach themselves to replicate this (with varying levels of success), while a small child is behaving in their natural state, rather than one with learned modifications.

While breastfeeding she would pull away if I gazed at her. Whilst in her door-bouncer she would turn around to face the opposite direction if I tried to engage with her. (Parent of girl with autism)

I have quite a number of memories that date back to two years of age and onward. Most of my memories of people during my toddler years are of parts of their bodies and not their faces or eyes (e.g. feet, hands, hair). (Woman with autism)

It is important to note that in autism, a lack of eye contact does not equate to someone not understanding or listening. This may give rise to a child being described as a ‘daydreamer’ or ‘in her own little world’ when in fact she may be entirely present but not making the socially required non-verbal signals to indicate that she is. It may be that other senses can be utilised more effectively if a person doesn’t have to look at the unfathomable movements of a face at the same time.

I had a reputation in my family as being someone who did not listen to people. Part of that may have been due to the fact that I often did not look directly at them or did not appear to be attending to them when they spoke to me. They would often say: ‘Listen! Use your ears… Look at me when I am speaking to you… Pay attention!’ (Woman with autism)

Some parents observed differences in other non-verbal communication skills that one would usually expect from even a young child, such as pointing and the showing of items. Robyn Steward (Jansen and Rombout 2014) says that her mother knew she was autistic when she was only a few months old because she didn’t cuddle up to her, make eye contact or point at things. Her mother began to sing to her and that’s how they connected with each other. Once the diagnosis is made, it may be easier to look back and realise what was happening, although at the time with no reference point it would be difficult to pinpoint the root of specific behaviour, such as asking for reassurance to an unusual degree. This could easily be misconstrued as stemming from anxiety, rather than an inability to receive the required data from a face, for example. For clinicians and other professionals, it is important to consider these individual clues through the lens of autism to ascertain their true origin.

She misses many non-verbal cues and especially struggles with facial expressions and tone of voice and will regularly ask if someone is cross/happy with her as she isn’t sure. (Parent of girl with autism)

I didn’t know pointing meant I had to look unless I was explicitly told and I often couldn’t tell what the other person was pointing at. I found it pretty useless myself as a communication tool so didn’t really use it. (Woman with autism)

There will usually have been some kind of non-verbal or subtle sign that other children do not want her to play, [but] she misses it and the situation escalates. (Parent of girl with autism)

Speech, verbal communication and language comprehension

Language has always been part of the diagnostic criteria for ASDs, but has been dropped in the new DSM-5 criteria as a distinct measure. Individuals with autism present a varied profile across language ability, both in speech and language comprehension. Some individuals are entirely non-verbal throughout their lives, yet may have good intellect and sophisticated understanding. The majority of those questioned for this book had early speech, advanced vocabulary and sometimes ‘incessant chatter’. This was the case even when the general learning profile of the child was delayed or weak in other areas. Speech and language were precocious in many of these girls and something that those around them especially noticed. I was one of these children; my mother reported that I spoke full sentences by the time I was nine months old. It is likely that due to the weight given to verbal ability and speech, as indications of both intelligence and social skill, the eloquence of these girls may have distracted parents and clinicians from considering autism as a potential diagnosis.

Aged three, when she had something in her eye, she said, ‘I have an obstruction in my pupil’. (Parent of girl with autism)

This may have caused parents and professionals to overlook potential social difficulties, because speech was profuse and advanced in amount and vocabulary, even though it was not necessarily so adept in pragmatics (Attwood 2012). In contrast, these girls were also seen to have social difficulties in understanding social cues and reciprocal relationship development, despite their verbosity and apparent sociability.

I could speak eloquently by age two. My mother often describes it like I ‘swallowed a dictionary’ […] My comprehension of language was always very high though I would use words hollowly; [I knew] the context but not the exact meaning. (Woman with autism)

It is important that speech is not seen as the fundamental measure of intelligence or social skills, as it can be deceptive and misleading for both verbal and non-verbal individuals across the autism spectrum. It is necessary to look beneath the vocabulary and analyse the quality and nature of the communication and relationship dynamics. The words may be scripts learned from a favourite TV show, or overheard on a bus; the meaning might not be understood to the level that the eloquent and precise speech might suggest.

I spoke on time, but used a lot of echolalic speech (e.g., if I hurt myself, I’d say ‘Does it hurt?’ rather than: ‘I am hurt’). I also used quite pedantic speech with long words and spoke in very formal language. (Woman with autism)

She has difficulty with idiom, sarcasm, tone of voice, multiple and complex instructions. This becomes increasingly evident as her peers begin to understand these language usages. It was less obvious when she was younger as very few of the children had these skills. (Parent of girl with autism)

Individuals with autism are often described as ‘literal’, but this does not always fully encompass what this means in reality. One such resulting behaviour can be a wonderful and brutal bluntness and honesty that often accompanies autism at all ages. Many typical children are known to speak their mind and say inappropriate things, but those children will undoubtedly learn from their mistakes and quickly learn the skills of verbal and non-verbal subtlety, which, along with empathy, allow for more gentle interactions. This behaviour can be particularly poorly tolerated in girls, who are expected to be tactful.

‘Fat grandmothers don’t ride bikes.’

[…] ‘Liane, let your grandmother ride your new bike.’

‘No. She is too fat and she will break it.’ […]

And off I rode, on my bike, no fat grandmas with me. (Holliday Willey 2001, p.39)

The resulting reprimand for this type of truthfulness is deeply puzzling for the girl with autism who has yet to learn that sometimes honesty is not the best policy.

I remember being aware when I was about five that older kids did their ‘tables’, as in times tables. I imagined this involved stacking tables on top of each other and was gutted to find out it didn’t. (Woman with autism)

Individuals with autism can be literal, both in their own speech and in interpreting that of others, in ways that a non-autistic person couldn’t possibly predict or appreciate. This difficulty in seeing beyond the actual (literal) meaning of what has been said is a constant cause of anxiety for many on the autism spectrum because it generally involves other people (social interaction) and a potential for failure, confusion or something unexpected happening, all of which are stressful and to be avoided. The examples provided by my women respondents were both brilliant and painful, and beautifully illustrate what a baffling and distressing world they had to endure as small children. I could have presented an entire chapter on these head-scratching encounters.

When I was about seven I asked my mum how old she was and she told me she was 21 (she was in fact about 50!), but I believed her; and when I told my teacher this and my teacher insisted that she couldn’t be 21, I felt betrayed, I had no idea why my mother would lie about such a thing. (Woman with autism)

I was being presented with a perfect attendance award at a school ceremony and I did not respond several times when my name was called. When my mother asked me why I did not respond when my name was called, I told her that I wasn’t sure if there were other XXs in the audience (i.e. others having the same first and last name) and I wasn’t sure it was me they were talking about. At that time, I did not know that a person’s first name/last name combination was unique to each single person in most instances. (Woman with autism)

My mum organised a costume party. I remember that during the party all I wanted to do was to change in and out of costumes, until I had found the right one. The other girls wanted to play, and they kept telling me they were bored. I did not realise that the reason for a costume party was to play as usual only dressed up. I thought costume parties were to play at changing costumes. (Woman with autism)

Dealing with unpredictability

The inheritability of autism can be a blessing for some girls growing up with autism in families where similar characteristics may be inherent in parents:

We had a set routine and saw few new people. We didn’t go on holidays or visit new places and did not have birthday parties. I did not have to cope with much change […] I think my parents were both on the spectrum and liked what was familiar. (Woman with autism)

The fight or flight response to unexpected situations and occurrences is well documented in autism and reported by parents describing their girls’ behaviour. Parents can find themselves needing to be alert to potential triggers in order to maintain the safety of their children. Alternatively, parents struggle with a child whose response to an unpredictable world is to avoid it at all costs and remain alone at home. Parents can feel that their daughter ‘should’ be sociable, and they experience extreme guilt and sadness at her perceived isolation, whereas the child herself feels quite happy, calm and safe at home engaged in her own interests.

She would prefer to stay at home and never go out, so life is stressful for all of us trying to persuade her to lead a normal life. (Parent of girl with autism)

We are able to change routines if we do it slowly and give her a good explanation and a long enough presentation period (this is tricky as it is dependent on the situation – if we introduce a change or proposed trip too early, then she has increased anxiety and obsessive questioning!). (Parent of girl with autism)

Activity choice

Choice of play can be one of the earliest indicators of autism (Riley-Hall 2012). Interestingly, one of the findings from research into sex differences in children with autism was that girls with autism do not have the same stereotypical, rigid interests as boys (Carter et al. 2007). My research certainly found that repetitive and restricted behaviours were completely the norm for the girls studied but that topic type differed. A small number of activities came up time and time again as being favourites for repetition: watching the same TV/video/DVD programme (e.g., Mary Poppins, Postman Pat, Peppa Pig), reading the same book (e.g., an Enid Blyton book, Jane Eyre), listening to the same song/tape. The scripts and lyrics of their favourite shows, books and songs were all known verbatim by the children.

As an eight-year-old girl, I knew the entire songs and dialogue to the films: Sound of Music, Chitty Chitty Bang Bang, Annie and Mary Poppins. (Woman with autism)

Collecting and sorting specific objects were also mentioned. I recall spending many hours attempting to devise an efficient means of systemising my extensive collection of Lego®, but was conflicted about the criteria that should be applied – size of block, colour or function – and never succeeded in finding a system that satisfied me. It still disturbs me when contemplating my grandchildren’s Lego.

Although this is still the same core behaviour associated with autism, I think that there is a qualitative difference between male ‘lining up’ behaviour and female behaviour. The girls’ activities generally involve people, rather than objects (aside from an almost universal love of Lego). These people may be fictional characters, or only their voices are heard (in the case of music), but the girls’ interest in them is all people-based, rather than purely object-based (dinosaurs, buses etc.). The girls’ behaviour also all involves words and communication on some level.

Given the early and advanced speech mentioned by many interviewed, there does appear to be – in my sample at least – some desire for communication, language or words by these girls at an early age, even if the purpose and intuitive understanding of the social rules are not necessarily present. Surely it is no coincidence that, despite reported numbers of women with autism being significantly lower than those of men, many of the most established and prolific authors in autism – particularly those telling their own story – are women. Perhaps women with autism have an innate drive to communicate.

(She) would act out scenarios she had witnessed (real or books or films). The same scenes would be played over and over again […] She would always include the ‘he said’ or ‘she said’ after dialogue – as if she was reading from a book. (Parent of woman with autism)

Intense interests

I developed an interest in Coronation Street. Now, it is quite typical to enjoy soap operas, and I knew that it was perfectly okay for me to ask my classmates if they had watched the previous evening’s episode. I knew it wasn’t perfectly okay for me to tell them how many bricks the Rovers Return was made out of or the exact dates each character had made their first appearance, how I was making a scale model of the set. (Mason, in Hurley 2014, p.14)

Enjoying an intense interest in one or more subjects is a core element in the profile of autism, but differences in the specifics of this profile are noted between boys and girls (Attwood 2012). Boys’ interests tend to be object-based – trains, dinosaurs, space – while girls’ interests tend to be people- or animal-based – soap operas, fictional characters, animals and celebrities. This qualitative difference can explain why girls’ behaviour may not be noted as being unusual, due to the ‘typical girl’ nature of their interests (Simone 2010; Wagner 2006). Whereas a boy who quotes endless facts about ancient history, rather than playing football with his peers, may be flagged as atypical, a girl who obsesses about a pop star would not necessarily be seen in the same way. The difference between the interests of a girl with autism and a typical child is the narrowness of the topic and the intensity of the interest. These girls with ASD have single-track focus; they do not think or speak of anything other than their passion for an extended period. They may have extensive knowledge of their subject but have more of a factual interest than a desire to live it out. A child who speaks of nothing but horses may not actually want a horse, but just enjoys the facts about horses. I believe that the interest provides the same outcomes for both girls and boys on the autism spectrum; once immersed in your subject of interest, there is a predictability and escape from the chaotic real world. Knowing everything about a subject makes it known and provides a sanctuary from the anxiety and stress of a feeling of not knowing what’s going to happen most of the time.

Animals in general are a popular interest as they are far easier to deal with than people for many females with autism: their intentions are clear (no hidden agendas), their non-verbal language is minimal (cats don’t pull too many facial expressions), their needs are easily identified and their attachment and affection are unconditional and unchanging. Some girls identify so strongly with animals that they imagine or wish themselves to be one (Attwood 2007).

I was a pony before I had one. I cantered everywhere, neighed out loud and jumped imaginary obstacles. (Woman with autism)

I would suggest that animals are more of a favourite interest for girls than for boys with autism. As previously mentioned, there does seem to be a desire for many of these girls to connect in some way with living beings (people, animals, insects) rather than just with inanimate objects, as the boys tend to do. The nature of this connection, however, may be significantly different than that experienced by typical children.

Typical interests of a girl on the autism spectrum

These interests include the following:

•animals – cats, horses

•nature

•soft toys

•characters from books

•collecting

•TV programmes

•TV/movie actors

•historical characters.

I collected lots of items, from key rings to daddy longlegs (insect) […] I had an old jar that I filled to bursting with these insects; really awful when I think back to these creatures suffering. I loved to look at them in the jar; I was fascinated with them moving about crammed together. (Woman with autism)

She gets fixated with certain people who she admires. These can be real (e.g., an older girl at school), historical (e.g., Princess Vicky, daughter of Queen Victoria), or imagined (e.g., a character from a book or film). (Parent of girl with autism)

After reading The Hobbit and Lord of the Rings, she learned the two languages – Quenya and Elvish – and spent hours writing them. (Parent of girl with autism)

Toy choice

In those asked, toy preference in girls was overwhelmingly driven towards toys designed for ‘doing’, rather than imagining or pretending. Knickmeyer et al. (2008) found that girls with autism did not show a preference for female-typical items when engaged in play that did not involve pretence. Cars, Lego®, construction, Pokémon™, robots and monsters all featured. For me in the 1970s it was Airfix® models along with the cars and Lego®. Even for girls who loved having soft, cuddly toys and dolls, the play was more in organising, collecting and sorting rather than interactive and imaginative play with these items.

I must have been around two years old when my grandmother gave me a doll. I remember how much I disliked it. I put it in the bin. (Woman with autism)

The girl with ASD may have more dolls than her peers, but these may be arranged in a specific order and not used for shared imaginative play (Attwood et al. 2006). For those girls who did play out scenarios with teddies and dolls, it is generally anecdotally reported by parents and individuals to often be verbatim scripts of earlier events or replications of parental behaviours. One child would re-enact her school day word for word with her toys at home (this was verified by the parent asking the teacher about the day). On first appearance, these activities can look very typical and imaginative, but this may not always be the true picture. A child who talks to herself out loud and puts on different voices may not be creating imaginary characters and complex worlds, but may be repeating TV shows, conversations and events that she has actually experienced. It is important that accurate and detailed information about the content of the play is gathered, as taking the observation at face value may be misleading.

When she does play with girls’ toys, she has very prescriptive play – undresses them all and puts them all to bed – with no story or interaction between dolls. (Parent of girl with autism)

Gave my soft toys idiosyncratic or functional names – Best Ted, Fat Ted (‘Fat’ used in a descriptive rather than a derogatory sense). (Woman with autism)

Some girls in my sample didn’t play with any toys at all, preferring to be outside, active and enjoying nature. Tony Attwood includes an interest in nature in his Girls’ Screening Questionnaire (Attwood 2013).

I did not play with the typical toys; I preferred to be outside running free. (Woman with autism)

Other commonly reported activities included colouring, collecting items and reading. Many girls with ASD are self-taught readers (Simone 2010), learning quickly and voraciously devouring any book they can find, whether information-based or fiction. As Rudy Simone says: ‘Information replaces confusion’ (Simone 2010, p.23). Not only does reading offer a solo escape from a chaotic world, it also provides knowledge and data that may help the girl to manage that world once she has to return to it. Shared pretend play didn’t appeal to many of the girls in my survey; they preferred to be ‘doing’ rather than ‘being’, unless, that is, they were immersed in a solo fantasy world of their own creation; more about that in a moment.

Encouraging interests and desire for knowledge is a good way to support and motivate a girl with ASD. Parents and professionals may be concerned about her isolation and lack of social interaction, but it may be that school or family life overwhelms her far more quickly than it does other children, and allowances need to be made for her to be alone in order to replenish her capacity. If this is not appreciated, eventual shutdown, meltdown and/or increased anxiety will be the almost inevitable result.

She loves books and plays with them as well as reading them – almost like they have their own personalities. (Parent of girl with autism)

Play was almost exclusively solo for the girls in my sample under the age of around six years, although some girls did seek out the company of others, but found that it only took a very short time for them to either offend the other children or become upset with the notion of shared play. The girl appears to take either a domineering role, in which all activities have to be on her terms, or a more passive role where she is ‘mothered’ by more socially able girls. These findings back up another study (Knickmeyer et al. 2008) that found that girls did not show a preference for ‘female-typical’ items in non-pretence play, whereas boys with autism did show a preference for ‘male-typical’ items. In pretend play, girls with autism show a preference for same sex-typical toys (as do boys with autism). One suggestion is that girls with autism are more likely to have learned how to do pretend play from their parents, as this is often more encouraged in girls than in boys. Girls, as we have heard, also appear to be motivated to learn how to fit in and behave as expected of a typical girl and this may demonstrate a high capability for imitation.

For the few girls who did play with dolls and more traditional female toys, in most cases parents and individuals reported that this appeared to be more from an awareness of what was acceptable and required by other girls in order to be considered for social interaction and friendship.

A likes pink and princesses. I think this is because the other girls like them – she doesn’t actually play with her princess dolls unless her friends are playing with them. She much prefers to be outside collecting flowers and insects. (Parent of girl with autism)

Fantasy worlds

One of the common anecdotally reported differences between the male and female presentation of autism concerns the concept of imaginative play, as discussed above. Traditionally, children with autism are considered to not engage in imaginary play due to a limited ability to generate fictional worlds and ideas. The observation of play is normally part of the diagnostic assessment, and the classic lining up of cars that many people associate with autism is thought to be a clear indicator of differences or limits in the typically expected imagination. In girls, however, something different is sometimes seen, which may seem contradictory to the comments presented above that stated that girls were less creative in their games. Individually and privately, girls with autism are known to sometimes inhabit a rich fantasy world full of imaginary friends, animals and creatures (Attwood 2007; Holliday Willey 2014). Having imaginary friends is not particularly unusual for any child, but as Tony Attwood (2007) says, ‘the child with Asperger’s syndrome [sic] may only have friends who are imaginary, and the intensity and duration of the imaginary interactions can be qualitatively unusual’ (p.25).

I much preferred the company of my imaginary friends. Penny and her brother Johnna were my best friends, though no one saw them but me. My mother tells me I used to insist that we set them places at the table, include them on our car trips, and treat them like they were real beings. (Holliday Willey 2014, p.19)

The biggest universe I ever created originally contained about 100 creatures, but this is now over 1000, as this universe has stuck with me throughout my entire life […] This fantasy is a place I would often slip into as a child, especially when I wished to avoid other people. I had in excess of 64 imaginary friends and I much preferred playing with these characters than interacting with anyone at all. (Woman with autism)

I believe that this is not a contradiction but represents a difference in what girls with ASD present visibly in terms of play and games (often when others are involved), and what really goes on in their private worlds inside their heads where there are no boundaries, restrictions or social rules. Having no interest in fiction is an indicator on some autism assessment tools that were developed through investigation of the male profile (due to larger numbers of males available for sampling, rather than any deliberate intent to exclude females). However, overwhelmingly what we see in girls is an unusual extreme identification with the characters in fiction books, TV programmes and sometimes people they know and feel an attachment to; the girls actually ‘become’ the character. This may involve re-enacting scenes from the book, film or show over and over again, mimicry and getting lost in the fantasy to the point of having difficulty in separating it from real life. As mentioned previously, we also see girls who identify far more closely with animals than humans and believe and behave as though they are a cat, for example. One young woman, aged 18, whom I worked with, said that she didn’t want to grow up as adulthood seemed too scary, and that if she were a cat, people would take care of her. She would often wear a tail and cat ears.

She was obsessed with Postman Pat’s cat, Jess, and would like to be talked to as a cat and reply in cat language. (Parent of woman with autism)

From a diagnostic perspective, it is possible that this could be viewed as delusion or psychosis, whereas for the girls I spoke to, it was more of an escape to a better place from a real world that was difficult and sometimes unhappy.

I used to disappear to some local hilly fields and roam around pretending I was Maria, from The Sound of Music, singing my head off. Fantasy was my escape. In my pretend world, I was an amazing, talented girl. (Woman with autism)

I much preferred my imaginary world to reality and would spend as much time as I could (apart from when I was reading) thinking about my fantasy world. I often hated getting out of bed because that was a great place to think about my imaginary friends undisturbed, and having to drag myself away from that and return to reality was horrible and depressing. (Woman with autism)

Sensory tolerance

My number one preferred activity as a toddler and young child, was rocking including: rocking on my duck, rocking on my rocking horse, rocking on my bed or rocking on the floor. (Woman with autism)

Observable sensory differences can present themselves early on for children on the autism spectrum and these are likely to be made known in no uncertain terms by an infant or small child. Refusal, screaming and general extreme distress when encountering specific objects or sensations may be an indicator of an inability to tolerate something. Equally, for those who discover a sensory experience that soothes and calms, a seeking out and incessant desire for that stimulus might be noted. Some of these behaviours originate from external sensory stimuli such as noise or tactile textures, while others are self-generated and found to be either enjoyable in their own right, or are used as a self-soothing strategy or means of communication in times of stress. W. Lawson (1998) describes a rich world of sounds and sensations and says that she was aware that her peers had not noticed these in the way that she had. Her world was made both stressful and soothed by different sensory experiences.

I did not understand why I was afraid to touch but now I think it caused lots of sensations that were overwhelming for me. It also called for some form of response, which meant having to make a decision. Decisions were confusing for me and it was easier to play it safe and stay with what was familiar. (Lawson 1998, p.41)

Liane Holliday Willey (2014) describes how many noises and bright lights made her life unbearable and that she found relief underwater in her ‘safety zone’ (p.28). Most of the women and parents I questioned list a considerable number of sensory preferences notable from infancy. For those writing as late-diagnosed adults, we cannot always know what these behaviours were attributed to (if anything) when these women were children, but the frequency and severity of some of the behaviours make it difficult to believe that they were not noticed at the time.

We have many photos of her squishing her face into mesh fabrics, rolling naked in fleece materials, drinking mud from a trowel! (Parent of girl with autism)

She used to like to push her forehead against the drum of the washing machine on full cycle to feel the vibrations and would put paper bags on her head as a toddler and just run until she crashed into things. (Parent of girl with autism)

She has a stereotypical whole body tic when excited which involves opening and closing her hands while twisting the wrists, curling and flexing her feet and opening her mouth all at the same time. (Parent of girl with autism)

Food

‘Marmalade and cheese!’ my friend exclaimed in horror.

‘Yes, it’s even nicer with banana’. (Lawson 1998, p.6)

As with many aspects of the autism profile, behaviours and preferences around food cover more than one element of the diagnostic criteria. Food can represent sensory tolerances, control, preference for sameness and predictability (and therefore avoidance of new and unknown experiences), as well as a different understanding of the social role of food. Specific criteria and rules regarding colour, texture, type, combinations, proximity of one item to another, times, smells and tastes are a relatively common feature in girls with autism. W. Lawson (1998) talks of her need to ‘mix and mash up my food’ (p.5) in order to cope with different textures, and also of feeling ‘afraid’ of trying new foods at school, which resulted in her hardly eating any lunch for six months. At this young age, it may be difficult to distinguish typical child phases and fads from something more complex and indicative of autistic-type behaviours, and as a standalone behaviour, this would not be in any way conclusive. Combined with other indicators, however, the child’s behaviour around food can add weight to a potential diagnosis.

I couldn’t tolerate lumpy foods or foods that were undercooked. I also had tomato ketchup with virtually everything in order to mask its taste. I was very sensitive to taste and liked things that were either sweet or very bland. (Woman with autism)

I like to eat my food on a certain plate specific to each different meal or type of food. If I can’t use that plate for some reason, it feels wrong and unsettling. (Woman with autism)

She began to express preferences for three or four food types around the ages of two to three […] She would change preferences overnight and want the next three or four food types constantly. She still eats like this now and rotations last about six months. (Parent of girl with autism)

Clothing

Universally, for those responding there was a strong preference for clothing that was comfortable, soft, stretchy, loose and smooth. For many, there was also a distinct dislike of clothes that the child considered to be ‘girly’ (their word). So, not only is there a sensory preference or dislike regarding certain textures, colours or fabrics, but an active choice around types of clothing (skirts, dresses) typically associated with girls. Kopp and Gillberg (2011) report ‘careless with physical appearance’ as a feature specific to girls with autism. I would question the use of the word ‘careless’ in this assessment, which is an external, observational judgement. The individual themselves may have taken great care in avoiding certain clothing or textures – the results may look ‘careless’ or atypical, but may be anything but. It could be suggested that clothing choice in this form may also illustrate something about gender identity and social conformity at an early age in these girls, a subject that will be discussed in greater detail in Chapter 10. Certainly, these girls and women were not generally likely to suffer discomfort in the name of fashion (which is surely a measure of social awareness).

I preferred jogging bottoms sweatshirts as they were made of soft, smooth, slightly stretchy fabric. Wool clothes physically hurt me and non-stretchy clothes felt stifling, no matter what their size. (Woman with autism)

She tends to opt for quite outlandish outfits and isn’t bothered by what her friends will think or what is fashionable. (Parent of girl with autism)

[She] has an intense dislike of clothes […she] will take them off as soon as she walks through the door and in any household where she knows she can. (Parent of girl with autism)

I like things to be tight around my waist and not tight around my neck. I hate socks and tend to wear them inside out to get the horrid stitching feeling away from my nails. (Woman with autism)

Toileting and personal hygiene

One of the unexpected outcomes of my questions was the high number of girls who had had difficulties in becoming independent with regard to toileting. Toileting issues are commonly reported in individuals with autism, so this should not come as a surprise: social rules, sensory issues and unpredictability are all involved in toileting and personal hygiene. What was surprising was that the majority of these girls did not have any intellectual disability and some were academically extremely intelligent. It could be expected that a child with limited language and understanding may be confused, frightened and distressed by the experience of going to the toilet, but I would have predicted this to be less so for those with greater intellectual capability. The causes may be varied, but anxiety and Irritable Bowel Syndrome are well documented anecdotally as issues for individuals with autism and it is possible that this could make it harder for a child to keep themselves clean. Obviously, it is important to rule out physical causes for toileting difficulties before making assumptions that they are psychological.

I didn’t use the toilet completely independently until I was around 11 as I needed help to wipe my behind on defecating. I eventually learned to do this myself, but had problems with what I now know to be Irritable Bowel Syndrome my entire life, including childhood. (Woman with autism)

Late to train, but because of extreme fear of poo not her inability to hold and use the toilet. It took ages for her to wipe herself, through worry of poo; she used baby wipes at first and then moved on to toilet roll. (Parent of girl with autism)

When I was two or three, I had a special toilet seat and would not go to the toilet unless it was on that special seat. (Woman with autism)

I wet my bed until I was 15 years old. (Jansen and Rombout 2014, p.99)

Participants cited difficulties with recognising the physical signals that indicated a need to go to the toilet, as well as anxiety around using toilet facilities outside their own homes. An expectation that toilet and hygiene rules and behaviour would be intuitive was reported by some women, who were aware that they had ‘got this wrong’ because the context of why these things were important (and how to do them properly) was assumed to be understood and therefore not taught.

I was punished severely for not cleaning myself properly […] If only they had just shown me how to do it properly. (Woman with autism)

I didn’t really understand the purpose of personal hygiene. When I started boarding, aged eight, some of the other girls noticed I didn’t clean my teeth, so I became more self-aware of things like this. I still only clean my teeth when I’m going to see other people or if it’s been about three days since I last brushed and they feel dirty. (Woman with autism)

Sleep

Sleep is often a problem for children (and adults) on the autism spectrum, but is also typically varied in all babies and infants. For some, bedtime brings respite from a stressful waking day, while for others it brings a new period of confusion and fear. Febrile convulsions featured in several responses and having a ‘fuzzy, buzzy head’ (Stewart 2012, p.43) was also mentioned by several girls. Anxiety about being left to fall asleep alone, night-time waking and distress, and needing someone to sleep next to them were also commonly mentioned. Poor sleeping patterns were reported by almost all of the participants, mainly due to the reasons cited above. Sleep difficulties are often reported in children with autism although causes are not conclusive. As well as anxiety, ruminating thoughts and sensory difficulties (temperature, textiles) may contribute. These issues can last a lifetime for some people, causing considerable health and occupational difficulties plus associated anxiety (about not being able to sleep).

From birth to eight months she cried all day and slept all night. She often slept 14 hours a night, she was so exhausted. (Parent of girl with autism)

She complains that she cannot get to sleep because her ‘head is busy and there are spots and lines when I close my eyes’. (Parent of girl with autism)

Have always counted to go to sleep […] this was a tool I used to stop myself thinking about other things which would depress me. I knew that when I could no longer concentrate on one number coming after the last I was very tired and would soon sleep; however, sometimes I reached over 1000. (Woman with autism)

Gender identity in childhood

Research suggests that girls and women with autism may have a more masculinised or androgynous neurological profile (Baron-Cohen 2002; Bejerot et al. 2012). This is discussed in more detail in Chapter 10 on adult gender identity and sexuality, but for many females with autism, evidence of this becomes apparent at a much earlier age. It is important to consider that the outward presentation of clothing or toy choice does not necessarily represent the internal cognitive profile. Some girls with autism wear pink and play with dolls, but their brain and thought processes tend to be more pragmatic, logical and less socially intuitive than a neurotypical female.

Not tomboy. Very girly, but do have logical and pragmatic brain. Not very emotional: like steady even dispositions. Don’t like games and drama. Hate pink; prefer blue and red or navy and white. (Woman with autism)

Of those participating, 75 per cent felt that they did not specifically identify with behaviours typically associated with girls, even at a young age. This was reported both by parents of girls and by adult women, but as mentioned above, it tends to be viewed diametrically, as either male or female, when in fact it may be simply a more gender neutral behaviour. The majority of respondents used the word ‘tomboy’ (this word was deliberately not used in the question and was offered by the participants themselves). For those who didn’t have a preference for typically boyish behaviour, they identified with something more androgynous:

I didn’t identify as either a boy or a girl (even though intellectually, I knew I was female). I identified more as an android or alien as I didn’t believe I could possibly be a human as I was too different from my peers and could see things and see truths about life that they couldn’t. (Woman with autism)

I hated the colour pink with a passion. I wanted to be a plumber when I grew up. Sadly this was frowned upon. I think I probably would have made a good plumber and earned a good wage. (Woman with autism)

I don’t feel girly but I can do my act, and I would never want to be a princess. I’d rather be a superhero or action man! (Woman with autism)

I related to boys easier, and I had more fun with them. Sometimes I would wish I was a boy; it all seemed so much easier for them. I never understood girls. (Woman with autism)

I hope that the evidence presented so far broadens thoughts about how the profile of a young girl could provide clear evidence for a diagnosis of an ASD when viewed through the lens of autism, rather than viewed through a lens that believes girls don’t have autism.