This is a question I have often asked and been asked without any satisfactory answer.
The answer often goes along the lines ‘statistics show…’, ‘boys are less sociable…’, ‘it runs in families…’ (neither helpful nor relevant) or more honestly ‘we don’t really know’.
Hans Asperger’s research in Autistic psychopathy in childhood (1944) shared his thoughts that no women or girls were affected by Autism (he later revised his thoughts). Since then there has always been a discrepancy in the number of boys and girls who are diagnosed as autistic. The ratios in more recent research range from 2:1 to 16:1 (boys: girls).
Why is there such a difference in the number of girls and boys receiving a diagnosis of Autism or Asperger’s syndrome? Could the difference be because:
- Girls cannot be autistic
- Girls are not being referred
- Girls are being misdiagnosed
- Autism presents in a different way in girls and boys
Having started to look into the area and if we accept that the first point is not the reason, I believe it to be a combination of the last three.
We have always known men and women’s brains work in different ways. There are many studies looking at the difference between the male and female brain. How, why and exactly what the differences are is still being researched, but there is a consensus that there is a difference. Sophia Walker points out that if this is the case then surely we should not assume that girls and boys with Autism Spectrum Conditions (ASC) will act or present in the same way.
Few girls are referred early for an assessment. In her paper ‘The lost girls’, Apoorva Mandavilli reports that on average, girls with mild symptoms of Autism are diagnosed two years later than boys. Other research that is often quoted shows that girls with pervasive developmental disorder, an autism condition that impacts the development of many basic skills, tended to receive a diagnosis at an average age of 4 years, compared to 3.8 years for boys.
Those who are not at the more severe end or do not have additional difficulties, are not referred as early, this is in part due to girls ‘hiding behind a mask’. Girls will often hide their difficulties in understanding social rules and will try to ‘fit in’ or camouflage their symptoms. This can be unconscious or conscious. Unconsciously girls may mimic other girl’s behaviours. Consciously girls may be more aware of social norms and will try to ‘play along’ for example one young girl Maya (as described in ‘The lost girls’) said ‘I don’t like making eye contact… I do it because I have to and I know it’s appropriate’.
In the same article, Pelphry raised the question as to whether we are more accepting of a very quiet socially aloof girl compared to a boy? I also wonder that if we are presented with two children displaying the same behaviours, are we predisposed to think autism when thinking about the boy but look for other reasons for the girl’s behaviours because of our experience, training and beliefs.
Whatever the reason, girls may not be referred until these symptoms cause other secondary issues. Girls will expend a lot of energy ‘covering up’ their Autism which may then lead to breakdowns at home (the 4 o'clock meltdown) or in the teenage years. These difficulties may lead to anxiety related mental health issues.
Rona Tutt, special educational needs lead for the National Association of Head Teachers emphasises the importance of looking behind ‘anxiety, depression, self-harm, eating disorders and the like in girls and women’ to see if it is possible that the root cause may be Autism. One study found between 34 and 36% of females with autism suffered from high rates of depression and anxiety.
In the Telegraph (July 2015) they shared that staff at an eating disorders clinic in Birmingham had recently discovered that between 60 and 70% of women in their twenties attending the clinic were undiagnosed autistic women. This is further supported by Professor Simon Baron-Cohen (Cambridge University Research Centre) who led a report into the association between Autism and Eating Disorders and noted that late diagnosis can be a problem for girls as their behaviour can be dismissed as ‘teenage hormones’. In the same article, Sarah Wild (head teacher at Limpsfield Grange in Oxted) is quoted as saying ‘They are full of emotion and implode into isolation and depression if things go wrong’ at about 13 years old many become school phobic and that is the age when things unravel.
There is a great need for research into how girls present differently at early stages rather than waiting for a different anxiety related medical condition to trigger the assessment process.
Once children have been referred, Liz Pellicano, a developmental cognitive scientist at University College London highlights that children are being assessed using ‘a biased male-centric diagnostic system’. An initial short assessment/checklist doesn't always correctly identify autism in girls and it is often misdiagnosed as a personality disorder. Only longer more detailed assessment and questioning and seeing a girl in different environments will lead to the correct diagnosis.
Current research is carried out on children that have already been diagnosed and therefore the gender bias is already in place and girls will continue to be underrepresented until research looks into the gender differences of children who may not have received a diagnosis.
We know that Autism is a continuum and no two children with autism are the same. However, as professionals and parents are starting to talk and share the experiences and stories of girls with Autism some commonalities are presenting and how girls with Autism are different to their male counterparts. Sue Larkey has written ‘Ten ways Girls with an ASD differ to Boys with an ASD’.
Some people assert that one of the most well-known early indicators of Autism is the child’s obsessions with lining up toys. Girls rarely line up toys but may display obsessions in other ways such as collecting things like shells, pencils etc. Mandavilli supports this by saying that a girls restricted interests in books or dolls, is much more socially acceptable than one of train timetables. Other obsessions can be celebrity, soap and fashion all of which are more socially acceptable for pre-teen girls. They may also obsess over friendships and develop one or two close friendships but these may exhibit a fixed way of interacting or with like-minded individuals. They may also yearn for boyfriends which can lead to them being very vulnerable and susceptible.
As more girls are beginning to get the correct diagnosis we need to look at the support and therapy we offer them. Currently they are being offered the same as their male counterparts, however as already established boys and girls are different. Girls will have to deal with puberty, menstruation, friendships and relationships. Arguably boys deal with these topics too (except menstruation!) but the social rules around all of these areas are different and therefore the therapy and support needs to be tailored to support these differences.
There is an increasing awareness of this under-represented and misunderstood group and hopefully we will be more aware and better able to support them in the future in referring to the appropriate people, getting the right diagnosis early and putting the correct support in place.