What it is like to be diagnosed with autism as a 45 year old woman

Laura James talks to The Independent about her long road to diagnosis

Laura James (Tim James)

For decades Laura James felt like a failure. Unable to "navigate the world" as well as those around her, she could not understand why, given her successful career and life, she often struggled.

Then last year, aged 45, James was diagnosed with autism.

“For 45 years, I had struggled with myriad physical issues and a sense of failure because I couldn’t navigate the world as well as my peers,” she told The Independent. “Suddenly in the space of a few short months, I had answers to both.”

James' late discovery comes as last year, the National Autistic Society suggested autism has been significantly under-diagnosed in women and girls and called for a change and improvement in diagnosis practices to combat this.

Autism is a condition most predominantly associated with men. Estimates of the gender disparity of the condition vary, some place the ratio at four to one, others three to one (2015) or even 16 to one.

Her friends initially reacted with disbelief she said, although upon reflecting it later made sense to them. Her two teenage sons reacted typically, she says: “The oldest asked if it meant we could go and count cards in Vegas and the youngest asked what was for supper.”

The main features of autism spectrum disorder are to do with social communication and interaction, often varying depending on the age of the person. The broad list of symptoms can include difficulty using or understanding facial expressions, jokes, sarcasm or recognising and understanding people’s feelings.

James prefers to think of the features of her autism as traits rather than symptoms because “some of them are great while others are difficult to live with”.

Her ability to hyperfocus and spot trends and patterns as well as her logical approach to life not being ruled by emotions are traits she categorises as good ones.

The sensory issues are more difficult for her: “I get overwhelmed by sounds, lights, smells and food textures. These can be exhausting and cause me to have meltdowns or shutdowns, meaning I either become non-verbal and need to sit somewhere quietly alone for a while or I feel as if my brain misfires and I become anxious and need to very quickly get out of the situation I am in. Occasionally this can mean I appear rude, or out of control to anyone watching."

Similarly, James often needs lists and notes to remind her to do things a non-autistic person might find easier to remember such as getting dressed, eating and cleaning her teeth. Socialising in large groups is difficult as are surprises – no matter whether positive or negative.

“I struggle to recognise my feelings,” she explains. “Generally they fall into only two camps: The good ones and the bad ones. The good ones come in pretty colours and feel soft, like cashmere between my fingers. The bad ones come in shades of green and are jagged and spiky, like a piece of plastic that catches your finger and makes you bleed. Essentially I try hard to live my life in neutral, trying to ensure there are no highs and no lows.”

Many people with autism experience difficulties finding employment, the National Autistic Society estimates only 16 per cent of autistic adults in the UK are in full-time paid employment and 32 per cent in some type of paid work. James is an exception to this statistic as she has successfully carved a career as a journalist and she owns a communications agency.

“When I was in hospital having tests for [Ehlers Danlos Syndrome - a genetic connective tissue disorder] a nurse just presumed I was autistic... At first, I thought she was wrong. After all, I communicate for a living, so how could I be autistic? But the more I researched the more it was like a light bulb being switched on,” James explains.

The 46-year-old always believed she had a physical condition due to her “strange” heart rate, ongoing stomach issues and joint pain. Prior to being diagnosed with autism and EDS, she had been misdiagnosed with everything from Generalised Anxiety Disorder (GAD) to having “bad luck”.

James likens life before her diagnosis to the final scene of The Sixth Sense: “Suddenly everything made sense to me and it felt almost impossible that I hadn’t suspected it before. It put so many things into perspective and was a relief, a vindication and an answer to questions that had been there for as long as I can remember.”

So why is it that women struggle to be diagnosed with a condition which affects roughly 700,000 people in the UK (more than 1 in 100)? James suggests one reason is that autistic women are virtually expunged from popular culture and another reason being that most research into the condition has been conducted on men and boys.

Whether male or female, misconceptions about autism often pervade through society.

“The biggest misconception is that we don’t feel empathy,” James argues. “This couldn’t be further from the truth. Many autistic people say they feel it too strongly. Others say they feel it, but need to respond with a practical solution, which can come across as being a bit cold. The autistic people I have met have been amongst the kindest, most compassionate and genuine I have ever met.”

James, who lives with her husband and dogs in North Norfolk and has four adult children. Currently, she manages her autism by staying physically healthy, getting lots of rest and fresh air and doing yoga. Recently, she has channelled her experiences into a new book Odd Girl Out. Part of her aim is to bring the existence of autism in women into the mainstream.

It is clear, following her diagnosis, that James finally feels at peace: “I used to feel I was failing to be neurotypical, now I feel I am a successful autistic woman.”

Odd Girl Out by Laura James, out April 6th, £16.99, published by Bluebird.