Are parents and professionals missing the signs of autism in girls? Looking at why female autism is often diagnosed late and misunderstood
The most common autistic spectrum disorders (ASD) seen by health and education services are autistic disorder, also called childhood or classic autism, and Asperger’s syndrome*. Autistic disorder is characterised by speech delay and signs of impaired social interaction, communication and imagination.
Lorna Wing’s research found a ratio of two to one male to female prevalence of autistic disorder and fifteen to one for Asperger’s syndrome, suggesting that girls were less prone to the more subtle forms of ASD (Wing, 1981). Certainly, males are more susceptible to organic conditions (where there is measurable disease) such as autism which is a neurological developmental condition. In addition, girls appear to have some protection from the genetic variants that are thought to cause autism.
However, it is becoming clear that girls simply may be under-represented in Asperger figures because the history of research into ASD, from its inception with Kanner’s and Asperger’s work in the mid 1940s onwards, is based on males. Diagnostic tools – using interviews, specific tasks and categorisation of behaviours resulting in quantitative scores for analysis – were developed according to male phenotypes (Gould and Ashton-Smith, 2011). The ways in which Asperger’s syndrome manifests in girls have not been adequately investigated and only in the last five to ten years has attention been focused on females.
Signs of autism in girls
Diagnosis of ASD is based on the triad of impairments, identified by Wing and Gould in 1979. With Asperger’s syndrome, girls can present differently to boys in each of these areas of impairment.
(Holtman et al., 2007)
- boys with ASD tend not to appear motivated to be socially interactive, but girls on the spectrum do. However, girls have a history of failure in achieving and maintaining friendships
- girls gravitate towards older girls, who tend to mother them and act as a form of social “protection”
- girls may be socially immature and make a preference to play with much younger children who are not challenging and would allow the child with ASD to dominate play, giving them the predictability and control children with autism crave
- girls with Asperger’s may “adopt” a less able peer, perhaps someone with a learning difficulty, who may themselves be marginalised so they are open to being dominated by the child with ASD
- girls with Asperger’s may be unnecessarily dependent on their mother (or other primary carer) whom they regard as their best friend and confidante in a social world which they find challenging and frightening.
- boys engage in disruptive behaviours, whereas girls may be persistently “ill” to gain what they want or control their situation
- girls with ASD tend to act passively and ignore daily demands, while boys become disruptive in response
- girls appear more able to concentrate than boys, who become distracted more easily and can be disruptive
- girls tend to learn social behaviours by observation and copying, which can disguise their social deficits
- girls may find the idea of social hierarchy difficult, so they can respond inappropriately to people in authority, such as teachers
- children with ASD of both sexes need to learn the rules of “small talk” which they often find incomprehensible as a pastime. Girls’ difficulties tend to be masked by their passive behaviours and ability to mimic without understanding.
- parents may perceive their daughter as being non-specifically “odd”, but without being able to pinpoint the cause
- imaginative play does exist, but it is intense in nature, often focused on stereotypical female interests, such as dolls, make-up, animals and celebrities – which is why girls with ASD may not seem that different to females not on the spectrum. The key is the intensity and quality of these special interests, which are exclusive, all-consuming and experienced in detail
- children with ASD can engage in repetitive questioning well beyond the age that those who are not on the spectrum would normally do. They can exhibit poor empathic skills and a lack of social interest. They can also seem disinterested in the classroom and exhibit immature, impulsive and unusual behaviours. An inability to “move on”, even with basic matters, can be common – for example, not being happy to throw away old toys or clothes which the child has long since grown out of. This “cluttering” behaviour can outline their difficulties with change. While such types of behaviour may be common to both sexes, the ways in which they present can be different for boys and girls.
It seems that girls on the autistic spectrum may be less noticeable than boys because they are less disruptive and have an ability to mimic behaviours (Attwood, 2012.) However, they lack social understanding and any deep knowledge of language. This becomes increasingly obvious at secondary school level, when there are no younger children to associate with, when peer groups are more mixed and any “protection” may have dissolved. Additionally, multiple stimuli (such as crowds in corridors or screams in playgrounds) and changes to routines which occur at secondary education can increase individual anxiety greatly. Adolescence, involving unstoppable changes, such as menstruation and the growth of breasts and body hair, can profoundly affect girls with ASD, heightening anxieties due to lack of control over what is happening.
Mental health issues for girls
Anorexia nervosa has been called “female Asperger’s” because around one fifth of girls who present with anorexia have traits which are peculiar to the autistic spectrum; around 20 to 30 per cent of anorexic patients are perfectionists and demonstrate rigid modes of thinking and behaviour, which are common autistic traits. Anorexia offers girls with ASD what they perceive to be a positive outcome because lack of nutrition prevents menstruation and physical development.
It is not until puberty that girls’ social difficulties become more obvious, particularly as they enter secondary school when they can become the subject of bullying or can be generally marginalised and perceived as strange. Unlike boys, they become withdrawn, depressed and quiet, rather than aggressive.
Profound anxieties may be demonstrated in altered behaviours, lower grades at school, poor sleep patterns, low mood/depression and obsessive behaviour.
Research from 2011 found that many women who were later diagnosed as being on the autistic spectrum initially were thought to have learning difficulties, personality disorders, obsessive compulsive disorder or eating disorders (Rivet and Matson, 2011). This differential diagnosis could be related to lack of awareness of how ASD present in females.
The need for change
More research is essential to identify features of ASD, particularly Asperger’s syndrome, in girls and to train health and teaching staff about presentations in females. Diagnostic tools must be adapted to incorporate gender differences and ensure that scores attributed to behaviours include the range of symptoms in girls. Observation of girls in the social setting of school, paying close attention to friendships, is vital for diagnosis. Seeing how girls manage during unstructured time is also telling, since those with Asperger’s have difficulty identifying how to fill the time and do not enjoy the freedom but are lost and anxious.
The earlier diagnosis is made, the sooner intervention can be implemented. Within a school, this might mean:
- use of visual timetables or other visual aids to underpin communication and increase predictability
- emphasis on visual and sensory play for younger children
- occupational therapy input to address any sensory issues and enhance coordination and musculo-skeletal abilities
- programs to improve knowledge of facial expressions and understand the physical signs of feelings and attach names to those emotions
- social programs, involving exercises and language games, performed by small groups of children with ASD
- buddying between individual children with ASD and older volunteer children in school, who can offer social support and advice about social interactions
- structuring breaks and lunchtimes for girls with ASD
- increasing awareness among teachers so that they do not suddenly present tests to children with ASD (and therefore other children). Lessons should be highly structured and teachers should help those with ASD during unstructured time
- careful positioning of children with ASD in the class, away from distracting children
- warning of sensory stimuli that are to be introduced into the class
- close liaison with parents to understand if school is causing high anxiety which is being acted out at home (for example, with friendships issues) and discuss behaviours in school
- helping parents to support language skills, using games provided by school or speech and language therapists.
All research suggests that an early diagnosis of ASD, followed by appropriate interventions, will optimise the person’s life chances by increasing independence, understanding and accumulation of language and social abilities. To date, the ways in which females present with Asperger’s have not been thoroughly examined or used as the basis for diagnostic tools, which continue to be male dominated.
The All Party Parliamentary Group on Autism is recommending that there is a lead teacher for autism in every school who has relevant expertise and training. This follows a survey which found that 80 per cent of respondents thought that teachers were not given sufficient training to support children with autism. Any such training should, of course, include gender issues. After all, teachers are in a unique position to be able to identify the signs of ASD in girls and implement strategies to help them to develop to their full potential.
Kate Reynolds is a registered general nurse, counsellor and trainer of health professionals with 18 years’ NHS experience. She is the mother of an autistic child and the author of Party Planning for Children and Teens on the Autism Spectrum. Kate blogs at:
* The term “Asperger’s syndrome” is used also to refer to higher functioning autism (HFA) for the purposes of this article, since the only difference in presentation is that HFA involves clinical speech delay in childhood.
References and further reading
- Attwood, T. (2012) The Pattern of Abilities and Development of Girls with Asperger’s Syndrome. Archived paper at: www.tonyattwood.com.au
- Gould, J. and Ashton-Smith, J. (May 2011) Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum, Good Autism Practice, Vol. 12 No. 1 p 34-41.
- Holtman, M., Bolte, S. and Poustka, F. (2007) Autism Spectrum Disorders: Sex Difference in Autistic Behaviours Domains and Coexisting Psychopathology, Developmental and Child Neurology, 49 p 361-366.
- Rivet, T. T. and Matson, J. L. (2011) Review of Gender Differences in Core Symptomatology in Autism Spectrum Disorders, Research in Autism Spectrum Disorders. 5 (3) 957-976.
- Wing, L. (1981) Sex ratios in early childhood autism and related conditions. Psychiatry Research 5(2): 129-37.