When we think of someone that we know with autism, it is unlikely that we will think of 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.
Many more boys than girls are diagnosed on the autism spectrum: more than four boys for every autistic girl, according to the latest numbers from the Center for Disease Control. Researchers point to genetic differences. But clinicians and researchers have also come to realise that many “higher functioning” autistic girls are simply missed. They’ve been termed the “lost girls” or “hiding in plain sight” because they’re overlooked or diagnosed late. They don’t fit the stereotypes or their symptoms are misinterpreted as something else. And they may be better at hiding the signs, at least when they’re young.
Why have we overlooked autism in girls and women?
- Research on ASD has often excluded female participants on account of autistic females being so rare. As a results, what we know about autism from research is factually what we know about male autism. Therefore, our diagnostic criteria and processes are based mainly on male findings.
- As mentioned above, most people have a male stereotype of autism and as a direct consequence when a girl presents with “struggling socially” symptoms it is less likely that parents and the medical profession will think of autism. Part of this challenge may be “diagnostic overshadowing”. An example of this would be if an undiagnosed autistic girl presents with an eating disorder, a doctor may diagnose her with anorexia. However, if more investigations were carried out the doctor may recognize that this girl is presenting with anorexia and autism. This is important because the treatment plan for a girl with autism will be very different.
- There is a growing body of work that indicates that autism just presents differently in girls and therefore often goes unrecognized, especially in verbally fluent girls with normal intelligence. Girls with autism appear to be better at “camouflaging” their symptoms in order to fit in. Autism may look different in some women and girls compared to the male counterpart.
What does autism look like in girls?
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. An ability to hold their emotions in check at school, but be prone to meltdowns or explosive behaviour at home.
- 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’ (e.g. for small talk) or present with a tendency to “mimic” others in social situations in order to blend in (e.g. 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. May present with a desire to arrange and organize objects.
- Sensory sensitivities – can’t bear certain sounds, textures, sensations (e.g., clothing tags, socks, light touch, fluorescent lights), but loves and gets lost in other sensory experiences (e.g. 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. A special interest in animals, music, art and literature.
- 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 e.g. eating disorders, ADHD, clumsiness…
Undiagnosed autistic girls end up wondering “what’s wrong” with them, which can lead to depression, anxiety and loss of self-esteem. They work so hard to fit in that it wears them out. Girls with ASD are more vulnerable to internalising problems with significant consequences for their mental health. As we learn more about autism in females, we appreciate just how important timely diagnosis, effective support, and understanding can be. Raising awareness of girls and women on the autism spectrum is the first step in making a difference.
- Autism—It’s Different in Girls – Scientific American
- The Pattern of Abilities and Development of Girls with Asperger’s Syndrome – by Tony Attwood
- Girls & women on the spectrum – Dr Lori Ernsperger for Amaze
- Are girls with autism hiding in plain sight? – Interactive Autism Network at Kennedy Krieger Institute
- Interventions for Girls and Women on the autism spectrum – Simmons University
- Autism Spectrum Disorder and Girls – Middletown Resources
- Autism and Girls - Volume 2 – Middletown Resources
- Girls and Autism: Education, Family and Personal Perspectives By Prof Barry Carpenter, Francesca Happe and Jo Egerton