Characteristics of autism include a love of routines, difficulty with social interaction, repetitive behaviours and sensory problems such as with noise or textures. Photo / Thinkstock
Characteristics of autism include a love of routines, difficulty with social interaction, repetitive behaviours and sensory problems such as with noise or textures. Photo / Thinkstock
Ruth Wood meets the parents who only found out they were on the spectrum when their children were diagnosed.
When her youngest son was a baby, Lynne Watkins was afraid to look him in the eye. His intense gaze unnerved her. "It made me shudder and feel sick," she says. A similar panic gripped her whenever she was approached by someone in sunglasses, as the lenses resembled big, staring eyes. When taking a bath, she would turn all the children's toy ducks around so they weren't looking at her.
Today, Ms Watkins knows her anxieties about eye contact are due to autism, a lifelong disability that affects how she relates to people and makes sense of the world. But until her diagnosis at 41, in 2001, she had no idea why some things were a struggle. Only after her children, Brynmor and Rhodri, were identified as autistic as pre-schoolers did she discover she had a mild version of their profound linguistic and social difficulties.
"The specialists kept going on about eye contact," says the 54-year-old, who lives near Bristol. "They were also concerned Bryn didn't play with other children and loved routines. I didn't know what they were talking about. That behaviour sounded perfectly sensible to me."
Greater awareness about autism is behind a boom in diagnosis rates, and it is now known to affect more than one in 100 people in the UK. The National Autistic Society believes Ms Watkins may be part of a wave of adults recognising autistic traits in themselves and seeking diagnosis following that of their child.
"This can be a milestone in their life," says Carol Povey, the charity's director of the Centre for Autism. "It provides an explanation for feeling 'different' after years of not understanding why they found some things difficult or thought differently from their peers. It's also a gateway to identifying essential support."
Autism is not a single condition but a spectrum of disorders, affecting people in various ways and to varying degrees. Characteristics include a love of routines, difficulty with social interaction, repetitive behaviours and sensory problems such as with noise or textures.
Ms Watkins's sons are at the low-functioning end of the spectrum. Rhodri, 24, has never developed speech, has little understanding of the outside world and can lash out if distressed by a change to his routine or sensory overload. He has been in full-time residential care since he was 11. Bryn, 26, can construct basic sentences and has been to college but has minimal social skills. He lives semi-independently in his mother's home. Their mother, by contrast, has Asperger Syndrome, a high-functioning form of autism. She too loves routines and patterns, hates crowded or unfamiliar places and struggles to make friends, but it didn't stop her going to college, getting married (though she is now divorced), raising a family and running her own craft business.
Yet she feels a sense of missing out and longs for the friendship that comes from shared jokes and mutual understanding. And though she credits Asperger Syndrome for her honesty, amazing memory and organisation skills - her book My A-Z of Living with Autism and Asperger Syndrome is testament to these - she also blames it for her weaknesses.
Worst is the repetitive thinking she calls "tunnels of hell". "If a friend dumps me or I'm in a stressful situation, my mind torturously repeats all the put-downs people have ever said to me. All these hurtful sentences come back and shout incessantly in my brain for 24 hours a day except for a few hours' sleep. The only way I can stop them is to play my iPod at full volume," she says.
Through talking to professionals and attending talks on how to better understand her autistic sons, it gradually dawned on Ms Watkins she understood them perfectly well already - because they were like her. And it wasn't just their shared habit of avoiding eye contact.
"The boys used to have swimming lessons every Thursday," she says. "If it was cancelled it was a big shock to them to be out of that routine. I knew exactly how they felt." She also recognised their anxiety over unfamiliar places.
Eventually she confided in her GP she thought she might be autistic. Her GP asked if she did anything "odd". "I said it was difficult to answer that because obviously I didn't see myself as odd," she laughs. She then asked to be referred to the consultant psychiatrist who had assessed her sons, and her diagnosis was confirmed. This was more a relief than a shock. "It's as if I'm on a red road of life and I used to think everyone was on the red road. Then gradually I've discovered everyone else is on the blue road. It runs parallel but it's not the same road. Now I know that, it's easier for me. I talk more nowadays and feel more confident."
Although studies suggest thousands of autistic women may be going undiagnosed because they are better at copying social norms, there is strong evidence that more males than females have an autism spectrum disorder. They are four times as likely to be diagnosed.
Studies suggest thousands of autistic women may be going undiagnosed because they are better at copying social norms. Photo / Thinkstock
Former teacher Andrew Morrow, 48, got his diagnosis in 2013, two years after it emerged his son Michael, now 12, was autistic. His eldest daughter, Rebecca, 14, was diagnosed with a high-functioning form of autism a few months ago. Alarm bells began ringing when Mr Morrow's wife, Linda, started reading up on autism and noticed the many personality traits shared by father and son, including their difficulty reading facial expressions and body language and aversion to loud noises and social situations. When she pointed these out to her husband, he thought back on his life and everything clicked into place.
"I've always struggled to understand what people are talking about," he says. "I was happy to sit and listen but small talk makes no sense to me. It sounds terrible but I feel no emotional connection with other people. Joining conversations and recognising social cues are a nightmare."
Fortunately, Linda is adept at guiding her husband and children through such minefields. "I can bore people to death about military history unless she stops me," laughs Mr Morrow. "But I'm getting better, social-wise. I'm not as withdrawn as I was, and I spend time with people who know and accept me."
But although relieved to have some explanation for his anxieties, he's disappointed by the lack of support for autistic adults in the area south of Glasgow where he lives. There is no "cure" for autism; indeed many autism campaigners resent the implication they should conform to some "normal" ideal. Nor is there any single known cause, though some 400 genes and various environmental factors have been identified as influential.
"In the past it was seen as a childhood condition and I think that perception still persists," says Ms Povey. "Many adults have been diagnosed with depression, anxiety, borderline personality disorders and drug or alcohol issues without recognition that autism lay at the root of their problems."
Indeed, a third of adults have to wait three years or more for a diagnosis. Carl O'Keeffe, a photographer, is not surprised. After realising he felt some of the same disengagement, confusion and anxiety as his four-year-old autistic daughter, Robyn, he asked to be assessed about two years ago. Doctors agree he has Asperger Syndrome but have told him it's not worth seeking a diagnosis because there is little support for autistic adults. "That's not the point," says the 41-year-old, who lives in Lancaster with his wife, Roxanne, Robyn and six-year-old Phoebe-Leigh. "A diagnosis is my right. Having Robyn has made me realise who I am."
With autism directly touching the lives of some 2.8 million Britons - 700,000 adults and children plus their families - a societal shift in attitudes could be starting to emerge. Many theatres and cinemas have started offering autism-friendly performances, with reduced noise levels, fewer surprises, chill-out areas and a relaxed attitude to audience noise. And the National Autistic Society held its first ever autism-friendly rock concert in London at Christmas. For those like Ms Watkins who have spent a lifetime trying to fit into a neurotypical world, mutual understanding should work both ways."In my own life, my home, work, with friends and with children, I can be autistic," she says. "I can be myself."
