Not wrong, just different
Jen Birch calls it her “eureka moment”. She was sitting in a seminar at Auckland University, listening to a psychology lecturer describe the symptoms of a developmental disorder, when she thought: “She’s talking about me.”
Social awkwardness, inability to interact with other people, a need to stick to repetitive routine, difficulty understanding body language… it was Jen to a T.
Suddenly she understood why life had always been such a struggle for her, to the extent that she’d ended up in a psychiatric hospital three times.
She wasn’t stupid, or crazy, or weird, like she’d always feared. She had Asperger Syndrome.
“I was shaking with shock, but it was a good feeling,” recalls Jen. “It was so good to finally know that I wasn’t mad or bad.”
It would have been good to have known a lot sooner. Jen was 43, a mature student doing a BA, when she happened by chance to attend the lecture that wasn’t part of her degree.
That was 11 years ago, and life has changed dramatically for Jen since she found out that its Asperger’s that makes her the person she is. But before then she constantly wondered: “What is wrong with me? Why can’t I cope with life like everyone else? Why don’t I fit in?”
A small, slender, bright woman with a friendly smile, Jen (now 54) says she was a shy, awkward child who hated mixing with other kids. She was uncoordinated, had trouble dressing herself and couldn’t stand bright lights or loud noises. Yet she was a voracious reader and so good at writing and spelling that she got put up a year at school. By the time she was in secondary school she was reading advanced books and writing excellent essays, but she couldn’t talk on the phone, join in conversations or tie her shoelaces. Multi tasking was difficult – she felt like her brain couldn’t handle more than one thing at a time. She also had problems learning new things, and changes to her routine would upset her. She was very prone to anxiety, which eventually led to the nervous breakdowns that put her in Kingseat Hospital.
“The open wards at Kingseat weren’t so bad, but then they put me in a place called Claybury House, which has since closed down, and that was nothing short of psychological torture,” recalls Jen. “The treatment consisted of blaming you and persecuting you for all of your idiosyncrasies. I left more of a nervous wreck than when I went in.”
Bravely, Jen muddled on through life, feeling like ‘an alien from outer space’. She embarked on a succession of jobs and relationships with mixed results. Many were disastrous. Then she met a kind man called John, and although their long-distance relationship is now platonic, they’re still close.
Meanwhile at 39 she decided to do her BA, which eventually led to her attending the lecture that would lead to the diagnosis of Asperger’s and change her life.
“It makes such a difference, knowing its Asperger’s. I just have a different piece of brain wiring. It’s not wrong, it’s just different, and it means you have to do things differently.”
For example, because doing new things can be very stressful, Jen knows that if she’s going somewhere for the first time she has to prepare herself for the journey, and that doesn’t just mean looking at a map the day before.
“I will do a trial run first, actually going there, so I know what to do and what train or bus I have to take. If I have it sussed out I will feel calm on the day. If I don’t I will panic.
“If I didn’t know about the Asperger’s I would still be struggling unnecessarily. I still have difficulties but now I can address the areas I know I have trouble with in a logical manner.”
Because she knows working fulltime is just too overwhelming, Jen has a part-time job doing filing in an office and occasionally works as an exam supervisor at the university, where she also gives seminars on living with Asperger’s. She does voluntary work for her church but much of her time is taken up with Autism New Zealand, helping other adults with Asperger’s and their families.
Seven years ago she wrote a book, Congratulations! It’s Asperger Syndrome, an honest and insightful look at what it’s like to live with Asperger’s. “It was such a catharsis for me. I wanted people to know what it is like. There are a lot of challenges but it is not all bad. I’m proud of it, and the gifts it has given me, the gifts of reading and writing and spelling so well.”
Jen only wishes she had been diagnosed sooner. “I feel like I wasted decades of my life worrying what was wrong with me. I can’t have those years back. Now I’m trying to pack as much as I can into my remaining years. Look out world!”
For more information on Jen and Asperger’s see www.aspergers.co.nz
HOW DO YOU KNOW IT’S ASPERGER SYNDROME?
Asperger Syndrome is an autism spectrum disorder, which affects a person’s development.
Unlike severely autistic people, who appear to be trapped inaworld of their own, people with high functioning autism live in this world, but don’t always quite get it.
People with the disorder may have varying degrees of impairment and different characteristics. But the most common traits involve problems with social interaction, communication and repetitive behaviour, including:
• Difficulty understanding gestures, body language and
facial expressions.
• Difficulty showing emotions or being empathetic.
• Problems holding a two-way conversation.
• Needing to stick to routines and getting upset if those routines are disrupted.
• Being very honest and direct, sometimes to the point of being tactless.
• Having an overriding interest in a particular subject.
• An unusual way of speaking – such as a monotone voice
• Unusual sensitivity to light, sound or textures
• A black and white view of the world
• Accompanying (known as co-morbid) disorders like anxiety, depression and obsessive compulsive disorder
• Being exceptionally talented in a particular field such as music, maths, computer programming or academia
Getting a diagnosis of ASD for adults is not always easy –or cheap. At the moment adults with Asperger’s have to pay to see a private doctor for a diagnosis, which can cost several hundred dollars.
Psychiatrist Kev Appleton of Auckland’s Starfish Clinic is one of the few people who specialises in diagnosing Asperger’s in adults. He says there’s still a lack of awareness among the medical profession, as well as the general public, about how the disorder can affect adults and Asperger’s can be difficult to pick up, especially if the person involved is high-functioning or has an accompanying problem such as anxiety. They may get treatment for the anxiety – and in some cases can end up in the mental health system–but the Asperger’s may be missed.
Contact details for diagnostic services in the Auckland area are listed on the Autism NZ website. See www.autismnz.org.nz/Branches/Auckland-Branch.php
Other helpful websites are www.nzgg.org.nz/asd and www.altogetherautism.org.nz
Reproduced courtesy of My Generation, NZ Herald