I knew I was different but didn’t realise I was autistic
KATHERINE MAY tells how eventually being diagnosed as an adult was a relief and why she sees the condition as a gift
AS SHE drove along listening to the radio, Katherine May couldn’t believe her ears. At 37, after a lifetime suspecting she saw the world differently to everyone else, she finally realised why.
“There was an autistic woman being interviewed on the radio and suddenly everything made sense,” says Katherine, now 40, a writer who lives in Whitstable, Kent.
“She explained that she got really overwhelmed by physical sensations, like touch and smell.
“She also mentioned that as a child she felt very isolated and had periods of depression as a teen where she couldn’t cope and that was definitely true of me.
“I recognised myself in what she was saying and I realised I might be autistic too.”
After speaking to her GP and a private psychologist, Katherine’s suspicions were confirmed. But although Katherine was in her late 30s by the time she discovered she was autistic it’s not uncommon for women to wait years or even decades for a diagnosis.
Only one in three diagnosed as autistic is female and while men tend to be diagnosed in childhood, women are often well into adulthood before their symptoms are recognised.
And what’s more, a survey from the National Autistic Society (NAS) found women and girls were more likely to be misdiagnosed than men and boys.
“While everyone is different, girls are often better at masking the traditional signs of autism, making diagnosis harder,” says Carol Povey of the NAS.
“In the past research focussed on men and boys. Now we need to increase understanding of autistic women and girls.”
Though Katherine had felt different from other people throughout her life nobody suspected anything was amiss. “Right from childhood I was incredibly different to other children, through teenage years and into adulthood as well.
“But I always put it down to awkwardness. I never felt like I was allowed to see myself as different in a positive way.”
As an adult Katherine began to make friends but still felt different from her peers.
“If I went to a party I would end up hiding at the bottom of the garden, or in the loo. The noise, the smells of other people’s perfume and having to socialise with people I don’t know were too much to deal with,” she admits.
In 1999 she married Christopher, 46, an IT programmer, and in 2012 their son Bert was born.
BUT although Katherine felt a deep love for her baby, at times she found the feelings and sensations of being a mother too intense to cope with. “I had depression during my pregnancy and I really struggled to cope with the changes my body was going through. When my son came along I found it incredibly difficult to deal with the noise and the emotional demands that were being made of me.”
Those with autism can be hypersensitive to touch and there were times Katherine found it difficult to hold Bert.
“If someone touches me I get a kind of electric shock. So I felt overwhelmed by how long I had to hold him for,” she says.
And socialising with other new mums was emotionally draining for her. “In order to be seen as coping I was supposed to be going to parent groups and playgroups and all of those things other mothers find a lot of comfort in. But I ran a mile from them. I found the idea of them absolutely horrifying.”
Before she became a mum, when Katherine became overwhelmed she would take herself for long walks. “I used to walk quite a lot before my son was born, I needed something that would let me get into my own headspace for a while,” she says.
“But when I became a mother I felt like I didn’t have any space to think. All of the ways I used to relax had been closed off by motherhood.”
But she says it never crossed her mind that she might be autistic. “My understanding of autism was people who really couldn’t communicate with the outside world and looked obviously disabled or different.
“I’d heard people say things like, ‘Autistic people don’t feel empathy and they don’t understand what other people are thinking’. I didn’t relate to that at all.”
It was only after hearing the interview on the radio, when her son was three, that things began to make sense. “When I heard the woman describing what it meant to be an autistic woman, finally everything clicked. Actually autistic people experience emotions very deeply and they can get really overwhelmed by their sense of empathy, which is how I often feel.”
For weeks Katherine didn’t confide in anyone but eventually she told Christopher that she thought she might be autistic.
“I was worried he’d be dismissive but he just kind of stopped and thought about it and said: ‘Yes that makes sense’.
“He’s supported me through so many different phases of my life when I haven’t coped or when I’ve always made him leave parties early,” she says.
Katherine spoke about her concerns to her GP and eventually her diagnosis was confirmed by a psychologist.
“I came out very falteringly to people,” she says. “I was worried people’s opinions or expectations of me would change. But I’m lucky enough to have people around me who just saw it as fascinating and asked me lots about it.”
In fact since her diagnosis Katherine’s relationships with her friends have strengthened. “For example, it’s somebody’s big party tonight and I didn’t even have to pretend that I wanted to go. I just rang her up and said: ‘I love you very much. Let’s go out for lunch but I’m not coming to your party.’ It’s liberating to have a more honest relationship.”
HER diagnosis has helped her to understand her identity as a mother too. “There was never a moment when I didn’t absolutely adore my son but it was more about being able to handle the massive life change that having a child brings,” she says.
Now Katherine recognises the condition can be a gift. “I really value the way I see the world and despite how hard it was growing up I love being an autistic adult. I experience the world in a very intense way and while that can be tormenting at times, it’s also wonderful. “I’m hyperlexic so my brain is brimful of words. I don’t think I’d be a writer if I wasn’t autistic. “I’m not sure if early diagnosis would have been the right thing for me. I’m kind of glad I didn’t have to have endless tests and treatments growing up,” she says. “The huge point behind all of this is that if you notice someone is different then just accept that they’re different and be kind to them.”