‘Autistic women like me are still being failed, stigmatised and misunderstood’
If autistic boys are little professors, then autistic girls are playground psychologists.
Fascinated by human behaviour. Observing those around us. As a child, I unwittingly mimicked my favourite television characters and more popular classmates. I copied their hairstyles. I studied their accents and mirrored their mannerisms. I just wanted to be liked.
This chameleonesque quality enabled me to blend in and appear ‘normal’. Art was my ‘special interest’, which earned me praise from teachers and kudos from my peers. My collection of Merlin football stickers provided useful break time bargaining chips, but these ‘masking’ strategies only got me so far.
General awareness of autism is often based on a male stereotype commonly shown in the media. While there is an increasing amount of research into how autism presents in women, historically research was skewed towards males, meaning that girls often have to visit multiple clinicians before any suspicion of autism is raised, so they are typically diagnosed later than boys (and less often).
Charlie Hancock, a human sciences student at Oxford University, saw several professionals before receiving her diagnosis at 14. “My counsellor said I couldn’t be autistic because I wanted to have friends. A paediatrician told me I couldn’t be autistic because I could make eye contact,” she says. She finally saw a psychologist, who immediately recognised it.
I was diagnosed at 13. Incapable of navigating the complex and confusing social landscape of high school, I became disinterested and my disruptive antics attracted attention. Had it not, then my autism would have flown under the radar as it does for so many women like me. Autism was described in a far cruder vernacular in 1997, and I resented being likened to the socially awkward trainspotter depicted in the clinic’s leaflet. My mother tried to reassure me by saying “You’re on the high-functioning end of the spectrum,” but it would be over a decade before I’d accept my diagnosis.
As more women emerge from the autism closet, I find myself relating to their experiences. These women are articulate, funny, sociable creatures with unique stories to tell. I have found solidarity with this tribe. I have made peace with my autism. Twenty four years after my diagnosis I consider myself fortunate. So many women and girls struggle to get a diagnosis and therefore can’t get the support they need. My autism diagnosis hasn’t just been an invaluable tool for getting help, it has been a catalyst to gain a deep sense of self-awareness.
Hancock, now 19, regards her autism as “integral” to her identity. “I am up front – that way it becomes a part of me in the same way as my fondness for a particular type of literature,” she says. As a student debater, Hancock is confident self-advocating, and contacts new tutors at the beginning of each term to explain how her autism affects her, but she recognises that some autistic people are less confident speaking out.
Over the years, my disclosure has been laughed off because I “don’t look autistic”. My requests for reasonable adjustments have been interpreted as expecting special treatment. I’ve tried to hide my autism in the workplace out of fear that I would be viewed as less capable of doing the job, but by not disclosing, we are excluded from any support.
Jane Green, 58, is one of an increasing number of women to seek a later-life diagnosis after her eldest child was diagnosed as autistic. “I knew I was different but I wasn’t believed,” she says. As an autism educationalist, Green was repeatedly told that she couldn’t be autistic because she was a professional and wasn’t interested in data. “I didn’t fit into the autistic world, but I wanted closure,” she says. “I didn’t display what many believe to be the characteristics of someone with autism. I didn’t appear anxious, and I’d been keeping down a job without any reasonable adjustments,” says Green.
But while we often appear to be coping well without support, it takes an overwhelming amount of effort to mask our autism and if gone unchecked it can lead to autistic burnout. When Green’s mental and physical health declined, she had to retire on medical grounds. “I was clear that I was on the spectrum but people just didn’t want to believe a professional person in the same field as them could actually be autistic. It was very isolating.”
Green now uses her personal experience to advocate for autism. “I know doctors, lawyers, and teachers who are afraid to disclose their autism because they fear being stigmatised,” she says. “One woman told me she’d rather lose her job than tell her employer, because of the stigma.”
Rachel Morgan-Trimmer is head of training at neurodiversity consultancy Inclusively Tech. She points out that lockdown has shown how easy it is to implement some of the adjustments that would greatly benefit autistic people. Flexible/home working, a quiet space, positioning the desk by a window, and noise-cancelling headphones can all help us perform to our best abilities, although we all work differently.
“I would argue that the reasonable adjustments required by law actually come second to people’s attitudes,” says Morgan-Trimmer. “An inclusive workplace needs to be accepting of differences and to enable everyone to work to their strengths.”
Autistic women can achieve as much as our non-autistic peers, but for some of us, it takes longer to reach the milestones. This is less down to us than a result of having to navigate an inflexible system that fails to accommodate our differences. As more #actuallyautistic people become visible we can end the stigma. With acceptance, the autistic women of tomorrow can thrive.
Going Gold for #AutismAcceptanceMonth
The autistic community is sharing the message that awareness is not enough. We want acceptance. “Often ‘awareness’ means that someone has met ‘one of them’ or had ‘training’ on autism,” says Green. “We just want to be accepted as a part of humankind as much as anybody else.” The charity Autistic UK is promoting Going Gold for Autism Acceptance Month
