Thousands of girls, young women and non-binary children with autism could be going undiagnosed, Britain’s leading autism charity has warned, sparking worries that high rates of mental health issues among those on the spectrum could be just the tip of the iceberg.
Official statistics show that around 700,000 people are diagnosed as autistic in the UK, with men currently diagnosed at a higher rate than girls.
Studies on autism estimate that the gender ratio of diagnosis between men and women can range from 2:1 up to 16:1, meaning many girls and young women are being left to “feel different” without knowing why.
Autism Going Under The Radar
ASD is a hidden disability and symptoms range on a spectrum, with common signs including feeling overwhelmed in busy environments and finding general social norms that many slip into without a second thought, more difficult.
But girls with autism could be going under the radar of schools, teachers and doctors, the National Autistic Society (NAS) says, with many girls finding ways to mask the many typical signs of autism and therefore going unsupported in daily learning and assessments.
Current diagnosis tests in the NHS could also be missing the different symptoms that girls can present such as fewer restricted interests and repetitive behaviour than boys and acting within social norms with more ease, the leading charity told RightsInfo,
“The problem is that professionals often don’t understand the different ways autism can manifest in women and girls, with many going through their lives without a diagnosis and an understanding of why they feel ‘different’,” said Carol Povey, Director of the National Autistic Society’s Centre for Autism.
“This is because past research has largely concentrated on males, which means the way we understand autism tends to be very much based on the experiences of men and boys with the condition.”
Povey went on to tell RightsInfo that autism manifests in every person differently, but as a rule, girls are better at “masking” the traditional signs.
Gender should never be a barrier to diagnosis and getting the right support.
Carol Povey, Director of the National Autistic Society’s Centre for Autism
“This ‘masking’ can lead to a great deal of stress, and many women and girls go on to develop secondary problems such as anxiety, eating disorders or depression,” she said. “Gender should never be a barrier to diagnosis and getting the right support. To make this a reality, we need more research into the ways autism can manifest among different groups of people, and more openly autistic women with a public profile.”
But even for those diagnosed with autism while still at school, there are already warnings of a crisis in special needs provision in the education system.
Education watchdog Ofsted has found “serious concerns” over resources for those with special educational needs or disabilities (SEND) in 44 per cent of local areas inspected since 2016, a Guardian investigation found.
NAS saw a ratio of 3:1 between men and women supported by its adult services in 2015, while the ratio between boys and girls in the charity’s network of schools was around 5:1.
Looming Mental Health Crisis?
Mental health problems, already on the rise in British society at large, is especially prevalent in the autistic community with 80 per cent of autistic people affected, according to mental health charity MQ.
Research shows that anxiety already affects 40 per cent of those with ASD and 30 per cent have depression, causing further impacts on their everyday lives. A smaller study in Britain found that 23 per cent of the women in hospital for anorexia fell on the autism spectrum.
But these figures are only for those who have been diagnosed as autistic – and don’t reflect the many potentially missed cases out there.
People on the autistic spectrum are just more honest about their sexuality than the rest of us. They’re not trying to pretend to be one thing or another that we all think we have to do to be accepted.
Dr Sally Powis, a Consultant Clinical Psychologist at NAS
Not limited to two gender categories, the NAS has found that those with ASD are up to 23 per cent more likely than those without to have gender dysphoria, where they may identify as the gender opposite to that assigned at birth, or as non-binary.
Those in the LGBT+ community are more susceptible to developing mental health issues, meaning that those who identify as queer and also fall on the autism spectrum could be especially vulnerable – but going unsupported in the current system.
Dr Sally Powis, a Consultant Clinical Psychologist at NAS, previously said this could be because “people on the spectrum as children might be less clued into social norms.”
“Part of me suggests people on the autistic spectrum are just more honest about their sexuality than the rest of us,” she added. “They’re not trying to pretend to be one thing or another that we all think we have to do to be accepted.”
Awareness In Society, Awareness In Research
But for others, the gender imbalance in current autism rates reflects a problem with how the issue is studied, rather than just how it is tackled by services in society. “You are inheriting any diagnostic bias that is built into the system,” explains William Mandy, a researcher at University College London.
Alis Rowe, who runs The Curly Hair Project, a social enterprise to help others with autism to feel more accepted, encourages others to read around autism and urged people to understand that being different is perfectly normal.
If you are an autistic individual who has spent her whole life trying to fit in, start to believe that it’s OK not to fit in.
Alis Rowe, The Curly Hair Project
“If you are an autistic individual who has spent her whole life trying to fit in, start to believe that it’s OK not to fit in,” she told the BBC.
“In fact, you have lots of unique skills and strengths to impart on the world. If you can, do what I did and make your differences a part of your livelihood.
“Even if you never receive a diagnosis, knowing a lot about it and being able to relate to other people helps – it means you are equipped with the strategies that other autistic people use. It can be literally life-changing.”