Think of someone with autism. Who do you picture? I doubt it was a teenage girl, or a middle-aged woman. Most people think of autism as mainly affecting boys, and our stereotypes tend to be very male; think Rainman, or Sheldon from The Big Bang Theory. But those stereotypes are one of the reasons that thousands of autistic girls and women are missed, mis-diagnosed and sometimes mistreated.
Until recently, experts believed that there were about five times as many autistic males as females. Current research (by Gillian Loomes from the University of Leeds) reveals a much more balanced male-to-female ratio of 3:1, based on high quality studies in the general population. By implication, there are thousands of autistic women and girls who have not made it to diagnostic clinics and are not receiving any specialist services.
Now, in a new book, Girls and Autism: Education, Family and Personal Perspectives, we hope to raise awareness of these autistic girls and women, so that parents, teachers and GPs will think "Could this be autism?" when they see a girl with social and communication difficulties and rigid/repetitive behaviour. Autism Spectrum Disorder is diagnosed based on behaviour; there’s no blood or genetic test for autism. By drawing on real life experiences of girls, their mothers, teachers, researchers and other professionals, we have explored why autism is often missed, and how autism can look rather different in girls compared to boys. While it’s clear that every girl on the autism spectrum is unique, there are some characteristics you might notice and should look out for.
These include:
- Struggling socially – may find it difficult to make or keep friends, can’t ‘put herself in someone else’s shoes’, or may find ‘doing social’ exhausting, needing lots of downtime alone afterwards (eg after school).
- Communication is different – may take things literally and find it difficult to tell if someone is joking or being sarcastic, may seem to stick to a ‘script’ (eg for small talk) or copy others (eg to know when to laugh).
- Finds change difficult – more distressed by unexpected small changes to plan or routine than others her age, dislikes surprises, needs certainty and sees things in ‘black or white’ terms.
- Sensory sensitivities – can’t bear certain sounds, textures, sensations (eg, light touch, fluorescent lights), but loves and gets lost in other sensory experiences (eg spinning objects or self).
- Intense interests - has all-encompassing interest in one, relatively narrow topic/collection, and it may be hard to redirect her attention or conversation to other things.
- Poor mental health – most autistic girls (and boys) suffer a lot of anxiety, and depression (and even suicide) can be a problem, as well as eg eating disorders, ADHD, clumsiness…
“Why have we overlooked autism in women and girls?” you might ask. I think there are at least three reasons.
First, research has often excluded female participants – partly because researchers expected autistic females to be so rare. The result is that what we think we know about autism from research, is actually what we know about male autism; it may or may not apply to females on the autism spectrum. And that research bias matters, because our diagnostic criteria and processes are based on those (mostly male) findings.
Second, most people have a male stereotype of autism, and so parents, teachers and GPs are less likely to think ‘autism’ when they see a girl struggling socially, than when they see a boy with social difficulties. We know that girls get diagnosed on average later than boys, and are less likely to get an autism diagnosis when showing the same autistic features. Part of the problem may be so-called ‘diagnostic overshadowing’; if an undiagnosed autistic girl develops an eating disorder, for example, a clinician may diagnose anorexia, but fail to dig deeper or recognise that this is anorexia and autism. And that matters because the causes and therefore best treatment for that eating disorder
may be very different in an autistic girl; perhaps an insistence on staying at an absolutely specific weight, rather than any concern about appearance or body shape.
The third reason is that autism may look different in some women and girls, compared to some boys and men. For example, while the intense special interests that are characteristic of autism typically have an unusual focus (eg, telegraph poles), for autistic girls the topic is often unremarkable (eg, a boy band, one breed of horse), and may not strike others as peculiar unless they find out just how intense, specific and all-encompassing it is. Some autistic females also tell us that they deliberately ‘camouflage’ their autism, for example painstakingly copying how a socially-successful girl in their class dresses, walks, talks and does her hair. An autistic friend of mine even trained as an actor to learn how to ‘act normal’, many years before she received her autism diagnosis.
For all these reasons, autistic girls are going undiagnosed, with significant consequences for their mental health. In the diagnostic clinics we have worked with, there are women coming for first diagnosis of autism in their 70s, after a lifetime of being misunderstood, and sometimes mis-medicated for mistaken psychiatric diagnoses. If their autism had been recognised, supported and their differences respected, their lives might have been very different. They might not have been so vulnerable to bullying, abuse, and isolation, with all the negative effects on their self-esteem and mental health. Raising awareness of girls and women on the autism spectrum is the first step to change that.
Girls and Autism: Education, Family and Personal Perspectives (Routledge, £29.99) is out now. 20% discount and free delivery with code A008. Discount available until 30/06/19
Francesca Happé is Professor of Cognitive Neuroscience at King’s College London who leads psychological research on autism. She will be returning to this post on Monday 8 April to answer some questions.
I mean seriously it's 2019 and yet here we are thousands of women and girls being missed. Why do schools have the autonomy of deciding who gets a referral and who doesn't - who made them god and the professional??? Parents and caters are the advocates and should be listened too!
