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From the archives: What it feels like to be autistic
02:10 - Source: CNN

Story highlights

Like many autistic women and girls, Laura James was diagnosed with autism very late and after several misdiagnoses

As a child, her extreme meltdowns were dismissed as naughtiness

Autism is neither "good or bad," says Laura. "It's like having brown eyes"

CNN  — 

Laura James, 47, is a successful journalist and author. She’s a wife to Tim and mother to four adult children. She likes fashion, cats and writing. She’s eloquent and quick-witted.

She also has autism.

She was surprised when the idea was first suggested to her back in 2015 by a friendly nurse during a hospital stay in London.

Laura James, 47, was diagnosed with Autistic Spectrum Disorder in 2015.

Laura was undergoing tests for Ehlers-Danlos Syndrome, a rare connective tissue disorder, and returned to her hospital room exhausted, hoping to find the air conditioning on, a tuna sandwich on the table and some peace and quiet.

Instead, the room was stifling, the food was absent and a child was screaming nearby.

“I just had an overwhelming meltdown … a proper explosive meltdown,” she said. The nurse who was with Laura took her to a quieter, cooler room, Laura recalled. “She said, ‘don’t worry, we see a lot of autistic people here.’

“I just assumed she was muddling me up with another patient,” Laura explained, half-smiling at the recollection.

But then she started reading about autism online. “I got to some traits of girls with autism and it was just like, ‘Oh my God, that’s so me.’

“I had never thought about autism, ever ever ever,” she said emphatically. “I thought that autism was ‘Rain Man,’ I thought it was boys… All of the stereotypes I absolutely believed because there’s nothing else out there to dissuade someone.”

Misdiagnosed from an early age

Autistic spectrum disorders (ASD) are about 4.5 times more common in boys than in girls, according to one study. Other studies of autism around the world consistently show much higher rates of diagnosis for males than females.

But not everyone is convinced that these numbers reflect reality. There are now countless studies that cast doubt on the gender ratios associated with ASD. There is also compelling evidence of generations of lost girls and women, struggling to cope with being different to those around them, who were (or are) undiagnosed, misdiagnosed or diagnosed far later in life than their male counterparts.

A 2012 study by the UK’s National Autistic Society (NAS) found that only 8% of girls with Asperger syndrome (now known as high-functioning autism) were diagnosed before they were age 6, compared to 25% of boys, with earlier studies conducted in the US in 2009 and 2010 finding similar trends.

It’s something that Carol Povey, director of the Centre for Autism at the NAS, is deeply concerned about. “In the old days we always thought that autism was very much a male condition,” she said. “What we are now starting to realize is that it’s not quite as simple as that, and that there are – and always have been – girls and women who are on the autism spectrum, but they present differently.

“Those girls and women often struggle for many years, and there is a higher likelihood of a misdiagnosis,” she said.

Laura was misdiagnosed several times. Her childhood doctor was convinced that she had an eating disorder. She was misdiagnosed with hyperventilation syndrome in her early twenties. And several doctors suggested she may have generalized anxiety disorder.

Laura’s eating problems and anxiety were signs of her autism but were misinterpreted for more than four decades. Hyper-focus, a common trait in people with autism that allows them to focus intensely on one thing for a long period of time, meant she often forgot – and still often forgets – to eat. Her sensory issues and Ehlers-Danlos syndrome also made it unbearable to eat particular foods.

Most of the anxiety Laura experiences is linked with her autism and it began early in life. “I distinctly remember as a child feeling different and behaving differently to other girls. I simply remember thinking that everybody else seemed to kind of get it. Everyone else seemed to know what to do and how to do it, like there was an instruction manual that I’d lost and they all had.”