Autistic women diagnosed late in life: Appearing 'normal' on an 'uneven playing field'

Many women with Autism are not diagnosed with the condition until they reach middle age, leaving them wondering what is ‘wrong with them’.

Boys are still five times more likely to be diagnosed with Autism than girls, despite growing awareness of the condition. One suggestion is that diagnostic criteria for Autism is biased towards the behaviour of men and boys.

Females often learn basic social skills and fake social interactions, which can mask many autistic traits, leaving Autistic women ‘hiding in plain sight’, according to the Autism Women’s Network.

Pamela Hirsch, who was diagnosed with ‘high functioning Autism’ in her 40s, and spoke at Tracscare’s recent autism conference ‘A better understanding of females with Autism’, revealed that having Asperger’s Syndrome, especially for a woman “can be a very heavy burden to bear, because in a lot of ways I come over as normal.

“As a young person, certain social skills were expected of me as a female, but as an Autistic female, with a differently wired brain and different emotions, those skills are not innate in me as they would be in a neurotypical female. It took me some time to understand this and to try to replicate the neurotypical female behaviour.”

Autistic women can try hard to 'fit in'

Women with Autism often try very hard to ‘fit in’. When they don’t, it can make them feel like a failure.

Pamela experienced this, saying “As a result of my lack of success in just about every aspect of life, I desperately tried to find out what was wrong with me. I wanted an explanation, and if possible, some help.

“I have been expected to compete with neurotypicals in school and work. But it’s an uneven playing field. Neurotypicals don’t have the struggles that I have in terms of just trying to orient myself within my surroundings or to understand verbal instructions. They have nothing like the deficits I have between my different skill levels.”

Cynthia Kim of the Autism Women’s Network believes that often, women seek a diagnosis later on in life, as they have tried for so long to be the same as everyone else but they can’t escape the feeling that something is fundamentally wrong.

She says: “Society expects women to have strong intuitive social skills. Many autistic women talk of their belief that one day they would ‘mature’ or simply ‘get it’. When they reach adulthood or midlife and that still hasn’t happened, they begin looking for another explanation.

Some clinicians still hold 'damaging stereotypes'

“Unfortunately, by that point, many women have become so adept at passing that mental health professionals refuse to believe they’re autistic. Some clinicians still hold damaging stereotypes of autism when it comes to women and adults in general. Women who suspect they may be autistic are told by professionals that they simply can’t be on the spectrum because they are too social, make eye contact, have a sense of humour, are married, have children or are empathetic and caring.”

However awareness of the fact that diagnosis of girls is less than that of boys is growing, with Dr Judith Gould, consultant clinical psychologist and director of The Lorna Wing Centre for Autism, saying: “Autism is more diverse than originally thought, with new ideas being put forward every day. In fact, it's a case of 'the more we know, the less we know', particularly in how gender affects individuals with autism.”

The Lorna Wing Centre for Autism has seen a steady increase in the number of women and girls referred for diagnosis, which the National Autistic Society suggests points to an historic bias towards men and boys in the diagnostic criteria for autism.

The National Autistic Society (NAS) carried out a survey in 2012, finding that in terms of Asperger’s syndrome, eight per cent of girls were diagnosed before they reached the age of six, compared to a quarter of boys and only a fifth of girls were diagnosed by the age of 11, compared to half of boys. Many women remain undiagnosed until later on in adulthood.

Misdiagnosis is leading to mental health problems

Consultant psychiatrist Iain McClure, who compiled NHS Scotland’s guidelines on Autism, is concerned many girls and women are developing mental health problems such as anxiety, depression and eating disorders, because their actual condition of Autism is going undiagnosed.

When Pamela Hirsch was finally tested for Autism, she failed at what were considered easy tasks and was very successful at more difficult ones.

“For example, following my IQ test which was mostly mentally rotating squares or triangles to fit each other or identifying patterns in number sequences, I was given the news that in terms of IQ I am just below the top 5 or 10 per cent in the country. When I thought it over, I felt like killing myself. It was as I had suspected; I have a really good mind trying to function through a physical organ [my brain] which doesn’t work properly. The consequences of this are that I can do virtually nothing with these abilities I am credited with having.

“Soon afterwards I went to a coffee shop. I watched enviously as the waitresses went confidently about their tasks. They might or might not have clocked up the IQ score I had, but they were doing things far beyond my abilities. I called to mind how I had been sacked from two consecutive jobs in similar cafes. I simply could not recognise the faces of the customers or locate the position of their tables to bring them their orders.”

A diagnosis of Autism has also given Pamela, who is now in her 60s, an explanation for her tantrums. These are emotionally charged outbursts where she screams and cries loudly and bangs her head against a wall, leaving her exhausted afterwards.

“Tantrums can occur when I am thwarted in doing something I am used to doing as in the case of my being prevented from getting to my mother’s house on time to make her dinner, or when I get frustrated with different aspects of my body which I find repugnant.”

A diagnosis of Autism can bring huge relief

Sue Hatton, Tracscare’s Autism advisor, believes hearing the experiences of women such as Pamela shows “how important it is that autistic women are treated quickly, attentively and compassionately”.

For Pamela being diagnosed with Asperger’s Syndrome has “been a positive thing. Because of it I no longer blame myself for my lack of success in education and training. I have stopped comparing myself to neurotypicals and started comparing myself to other Autistic people.”

Similarly Leigh Forbes, who runs Life on the Spectrum, a website for Autistic adults, was diagnosed at the age of 40. The relief for Leigh who had been trying to prove to herself she was ‘normal’ by going to coffee mornings with other mums, was huge.

'I could go back to being ME again'

She reveals that “the day I got my diagnosis, I finally knew why the world didn’t accept me, and could see there were people who would never like me, however hard I tried, and strangely, I no longer cared. This realisation released me from ‘having to be someone else’. There was no point anyway – I could never be that normal person (I had a diagnosis to prove it), so I might as well go back to being ME again!

“Eventually, I started to hop, skip, and jump, and wear multicoloured hats, and go barefoot if I wanted to – and sod the funny looks. And I could finally admit I hated coffee mornings, and never had to go to another one again.”

Tracscare is a leading provider of specialist support for individuals with Autism, Learning Disabilities, Mental Health needs and Acquired Brain Injuries (ABI). For more information go to https://www.tracscare.co.uk/