There’s nothing Maura Campbell enjoys more than spending time with her seven-year-old son Darragh. Like most young boys he is funny, full of energy, and has always been the center of her world.
However, Maura and Darragh share more than just a mother-and-son bond. Both of them have autism. But while Darragh was diagnosed with a disorder on the autism spectrum at age two-and-a-half, Maura, 47, didn’t discover that she has Asperger syndrome (a form of autism) until three years ago. She’s convinced that had it not been for Darragh’s diagnosis, she would have gone through the rest of her life unaware that she has autism, despite always struggling in social situations.
Maura, from County Down in the U.K., says: “As a child, I always had a feeling of not quite fitting in. It was as though everyone had been given a manual on how to behave except me. I was anxious, painfully shy, and probably came across as aloof. In truth, I had no idea how to function socially. I didn’t know how to approach other children and often they would tease me.”
“I want to show others that getting an autism diagnosis is not something to be feared.”
“I always felt more comfortable alone than surrounded by people, yet often I felt lonely. My parents and teachers didn’t notice that anything was wrong because I performed well academically. I don’t blame them for missing the signs. In those days, very little was known about autism.”
“However, everyone must have found me frustrating. I would take comments literally, and always felt compelled to correct the mistakes of others, but then wasn’t able to understand why they didn’t find this helpful. Sometimes I felt overwhelmed and became tearful. I was also particularly sensitive to bright lights. I’m sure everyone thought I was highly strung.”
As Maura got older she learned how to function socially through observation, which she describes as “almost an intellectual exercise.” In 1988 she joined the Northern Ireland Civil Service and is now a senior civil servant. She married Stephen in 2003, and Darragh was born four years later. After the couple noticed their son’s speech was regressing and he seemed to be in his own world, he was diagnosed with autism. Wanting to find out more, Maura began searching for information and wondered if she too had the condition.
“I found I could relate to some of the descriptions of Asperger syndrome,” says Maura. “It got me thinking about my own difficulties. Then by chance, I watched the movie Adam (about a young man with Asperger syndrome) and realized I was likely to be on the [autism] spectrum. Suddenly so many things made sense. I knew I had to take this further.”
Maura visited a specialist who — after reading the notes she’d brought with her, and going over her history — confirmed that she had Asperger syndrome. “I felt a huge sense of relief,” recalls Maura. “Finally I had a name for the ‘thing’ that made me feel different. It was like finding the missing piece of a jigsaw.”
From that point, Maura was determined to be open about her diagnosis and help others. Through her job, she is involved in contributing to a new autism strategy for Northern Ireland by working closely with The National Autistic Society and Autism Northern Ireland and has written articles on autism. She is also on the Board of Specialisterne Northern Ireland — social enterprise which helps those with Asperger’s or on the autistic spectrum get jobs in IT — and is often approached for advice by members of online autism support groups.
“I want to show others that getting an autism diagnosis is not something to be feared,” says Maura. “There are likely to be many adults who are on the autistic spectrum, but unaware of it, and I want them to know that being diagnosed later in life has benefits. My diagnosis has given me a sense of identity, enabled me to develop my strategies to manage challenges, and helped me get to know others with the condition. Most importantly it’s made me more confident as a mother, which is wonderful. If it wasn’t for Darragh’s diagnosis I wouldn’t have got mine. That makes my son even more special!”
What is autism?
It’s a lifelong developmental disability that affects how a person communicates with and relates to people and the world around them. Aside from communication difficulties, people with the condition may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colors.
Autism is often described as a “spectrum disorder” because the condition affects people in many different ways and to varying degrees. Some people with autism are able to live relatively independent lives, while others may need a lifetime of specialist support.
Around one percent of the U.S. population has autism. The prevalence of the condition is consistent across all age groups, however, there appears to be under-diagnosis in the older population. Awareness and expertise in autism have developed significantly in recent years, and increasing numbers are now receiving a diagnosis in later life. A survey carried out by The National Autistic Society found that 71 percent of respondents who were over 55 had received their diagnosis in the past decade.
Asperger’s syndrome is a form of autism. People with this are often of average or above average intelligence. They have fewer problems with speech, but may still have difficulties with understanding and processing language.
Photo © Marie Therese Hurson
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