Last year, in my late 40s, I was diagnosed with autism. I’ve always known I was different, and sought a formal diagnosis after the traits I’ve lived with for almost five decades became progressively more difficult to manage.

I’m certainly not the only woman who has had to wait a long time for a diagnosis. The National Autistic Society (NAS) is calling for doctors to have a better understanding of how gender differences affect autism, and to recognise that women and girls have been historically under-diagnosed.

In its 2012 survey of more than 8,000 autistic people and family members in the UK, the NAS found that women and girls were more likely to be misdiagnosed than men and boys (41% of females had been diagnosed with another condition on assessment, compared to 30% of males). And once they were diagnosed, women and girls were less likely to access extra support. In cases of Asperger syndrome, only 8% of girls were diagnosed before they had reached the age of six, compared to 25% of boys; and only 20% of girls were diagnosed by the age of 11, compared to 50% of boys. Many women remain undiagnosed until their 20s or 30s.

From an early age, I was fascinated with the way things worked and happiest reading books and being on my own. Playing with groups of other children was always disastrous. I also had sensory problems and an over-sensitivity. Labels in clothes, unexpected noises, strong smells and dirt and germs would stop me in my tracks.

When we were considering our O-level choices, my biology teacher suggested I pursue a career in medicine, but all I could focus on as she spoke was the smell of the lab and the alarming appearance of the locusts in formaldehyde. I couldn’t bear it, so I chose drama school instead. I’d spent my life training to be other people, watching and learning, surmising how to fit in, so I loved this experience.

I needed other people to explain to me the mysteries of human behaviour. My brother Michael, who died when I was 12, was one of these people; my mother, my rock, was another. As an adult, when both my daughters were diagnosed as autistic, I wondered if my eccentricities were similar to theirs, but life was so busy caring for them and my mother, who had Alzheimer’s, that there was no time to question it.

Last year though, when a counsellor raised the question again, I decided to pursue diagnosis. My GP referred me to a diagnostic team of two psychiatrists for a huge catchment area in Shropshire where there was a long waiting list. Frameworks for diagnosing autism vary and in my case concentrated on my childhood; I found it really difficult emotionally to talk about myself, and my husband accompanied me to the sessions over a period of months.

When the diagnosis came I cried with relief. I’d felt it was almost a battle, that I’d had to prove myself, that I wasn’t mad.

I realise now that I’d always known that I was autistic – as had my husband, and my oldest daughter Lizzy. I think my Mum suspected it too, especially after the girls were diagnosed. To anyone in my situation, if you want a diagnosis ask your GP whether you can be assessed. But know that, as a woman, you might be misdiagnosed at first because you’ve probably become adept at covering up traits and behaviour that others have told you is unacceptable. Women are generally raised and expected to be compliant, so diagnostic markers of autism are often self-suppressed and internalised.

It’s well documented that eating disorders and very high levels of anxiety are common for women and girls with autism. Food has been a friend and feared enemy for most of my life, and my anxiety stems in part from attempting to identify and comply with social rules. I find it impossible to be quiet, for example, if I believe someone in authority is wrong. I also have a tendency either to overshare, or to stay silent when I should speak up in my own defence. Mostly I identify social rules only once I’ve broken them. I’ve often crossed the invisible line of social conformity and faced retribution. I’ve been ostracised at work and online, because I say what I think, which is not always well received.

No two autistic people are the same. Some people with autistic spectrum disorder (ASD) are outgoing and gregarious, some shy and selectively mute. What unites everyone on the spectrum is that our needs, wants and desires are as essential as anyone else’s. An assumption that because we can’t necessarily express those needs in a way non-autistic people find palatable and understandable, doesn’t mean we don’t need to be understood.

For me the diagnosis was liberation from a life of censure, which targeted aspects of my personality over which I have no control. I was often told that my thoughts and feelings were stupid, that I was odd or weird or my emotions were inappropriate. The people who loved me, loved my passion; those who didn’t called me aggressive. That taught me to be quiet and to try to suppress what I thought. I felt relief on being diagnosed and when I discussed it online I received such supportive responses from others diagnosed later in life too that for the first time I felt I belonged.

I’ve been a disability rights campaigner online for eight years, so the decision to reveal my diagnosis was straightforward for me, but the stigma of autism and all invisible conditions was clear in the reaction, with many saying that it was brave to reveal this. It seemed no braver to me than saying I have blue eyes. So on Twitter I started the hashtag #SheCantBeAutistic to gather some of the dismissive responses women have received from clinicians, friends and family. Women talked about being told that they or their daughter couldn’t possibly be autistic, because they were able to make eye contact, had good verbal skills, showed empathy and weren’t violent. This shows the misunderstanding of autism in women, but of the condition in general too.

The pioneering work of Lorna Wing and Judith Gould has shown that autism is a spectrum. It has no bias in terms of age, status, wealth, location, race, ethnicity or gender. But achievement and life choices do seem to colour the view of some clinicians who have to diagnose this condition.

If a woman has had children, is in a relationship, is interested in makeup, music, fashion, or in my case doing stand-up comedy, this level of sophistication apparently makes diagnosis “less clearcut”. At worst, it apparently makes autism seem “nonexistent”.

Women are still expected to behave as others dictate, from the function of our uterus, to the way we express ourselves in person or on the page. For women with autism our capacity and interest in conformity is diminished – we are no friend to the patriarchy. The status quo is that autism is seen as a predominantly male condition. Wider recognition of autistic women must start now.

 

Article from The Guardian;

https://www.theguardian.com/commentisfree/2016/aug/30/diagnosed-autism-m...