Autism is much more common than most people think – in the US approximately one in 59 children are diagnosed as having autism, while in the UK it’s roughly one in 100. But many stereotypes abound, particularly when it comes to how the condition affects girls and women.
Georgia Harper is Policy and Public Affairs Officer at Autistica UK and Youth Patron of Ambitious About Autism. She says she was fortunate to have been diagnosed with autism at the age of nine, which is unusually young for a girl, as many are diagnosed late or misdiagnosed completely. Up until recently the belief has been that autism affects boys disproportionately, but experts now think many girls and women are being missed.
One theory for this is that they are better at hiding how they feel. “Girls are often socialised to please people and be quiet little girls, that can feed into masking their feelings” Georgia says.
This means a large number of girls are going into adulthood misdiagnosed with mental health conditions, or are simply not being taken seriously.
“I think society is probably just about starting to recognise that autistic women exist full stop. There’s a lot of telling girls to stop being over-dramatic or silly, which may not be specific to women, but potentially more so for those women that have grown up undiagnosed and may be less likely to be believed as being autistic in the fist place.”
“It’s not like having a big neon sign. Something autistic women get a lot is comments like “oh, you don’t look autistic.” I mean, what does autism look like? In people’s heads it looks like a five-year-old boy.”
In Georgia’s case, her parents had to fight very hard for her diagnosis because her grades were good and teachers didn’t believe she had any problems. “At the time I didn’t really understand what it meant. When I went to secondary school in my teenage years I started becoming a bit more self aware, and other people made their opinions of me quite clear. I was glad that I knew, rather than internalising it.”
The impact of not being correctly diagnosed can be huge. “If I hadn’t known I was autistic going through secondary school and uni I might have blamed myself, and that’s an experience I hear a lot from late diagnosed autistic people, particularly women. For these adults getting that diagnosis brings a huge sense of relief, and just an explanation. It means you understand yourself a bit better and if you experience sensory overload from different stimuli you’re able to figure out what those things are, and work around them.”
Unfortunately it doesn’t always mean getting the right support, particularly in the years beyond childhood. “There just aren’t any support services for adults” Georgia explains. “You’re given the diagnosis, a leaflet for the National Autistic Society and that’s it.”
This is especially dispiriting for people who battled to get the diagnosis in the first place. “Autistic people get pushed around between different services. People think that autism is a learning disability, which it’s not, so they are pushed to mental health services when it’s not a mental health condition. If they have a mental health condition and are autistic they often get told “oh, we don’t do autism” even though that’s not what they’re there for. I think there’s this idea that there’s this “other” autism service that doesn’t actually exist.”
This year is the tenth anniversary of the UK’s Autism Act, and the government is due to review its strategy with a consultation that will take in the views of people with the condition, their families and carers. “I’d like to see more recognition of the various mental and physical conditions that can accompany autism” Georgia says. “The rates of things like suicide and eating disorders are shockingly high, and they’re something services are not equipped for. There’s a very one size fits all approach. I’d like to see more recognition of post-diagnostic support, the fact that it’s not just a case of getting diagnosed and everything’s fixed. There needs to be more resources and research into what works afterwards.”
There also needs to be more people with autism involved in the conversation, which will help to dispel the many clichés that surround it and increase understanding. “We’ve come a long way from the Rainman stereotype” Georgia explains, “but we have a binary where people think you either have no difficulties whatsover and are a super genius, or they think you have another another type of autism where you’re incapable. Half of us have our strengths ignored and half of us have our difficulties ignored. Autism is a spectrum rather than a two point scale.”
World Autism Awareness Week runs till April 7th.