Life Behind Glass: A Personal Account of Autism Spectrum Disorder
By Wendy Lawson.
Jessica Kingsley Publishers, 2000, 118 Pages
ISBN: 1 85302 911 4
Available in Canada from Irwin Publishing at
www.irwinpublishing.com
Reviewed and Recommended by Jan Cooper of Guelph for OAARSN
Life Behind Glass is about a journey of struggle and triumph. The author, Wendy Lawson, says she has always known she was “different” from other people, or at least different by society’s standards. It was her “insatiable appetite for knowledge” (p. i) that has enabled her to overcome alienation, misdiagnosis and misunderstanding by society to become a survivor. There are people who have committed themselves to helping her face the obstacles, the challenges of being autistic. There were many that shunned her because of her inability to act “normal”. It is a remarkable story; one that Wendy says took over twenty years to write. Her reason for the delay? Wendy says she didn’t think we were ready to hear the message. Now, perhaps it is time.
Wendy describes her life as a world behind glass, one where she is generally an onlooker and occasionally an active participant. Like Jasmine O’Neil (Through the Eyes of Aliens, 1999) Wendy sees the autistic person not as someone who “lacks the ability to operate as a complete person” but rather someone who may just “view life differently and, therefore, actually help to make up for the ‘lacks’ that others experience.” (p.1)
This is a woman who sees the world as an environment rich in colours, smells and tastes. To read her descriptions of times by the sea, decorating a nursery for her unborn child, experiencing the tastes and textures of foods one can tell that Wendy is a person keenly in touch with life around her. She says that colours and fragrances are so vibrant for her that she can “feel” them, they stir up all sorts of feelings in her. She knows that others around her do not understand how completely she can become immersed in this sensory thrill. “My friends tell me that most people do not stop and take time to notice the bright colours around them – lost in the wonder at the ‘feeling’ that colour evokes” (p.3). When you read this you wonder if maybe she is trying to remind us to “take time and smell the roses”. Perhaps she is the richer one for being able to experience her world so intensely while we rush about our lives missing out on the little miracles happening all around us. At the same time Wendy recognizes that she is unable to have this same rich experience when it comes to understanding human emotions and behaviour. In one chapter she demonstrates this situation by describing the incredible beauty of a new-fallen snow one winter morning. The colours and fragrance were so intense she could “feel” them yet she was unable to share the sadness and grief of her fellow nursing staff at the death of a patient who had died during the night.
Wendy chronicles her life interspersed with chapters on love and feelings, friendship, coping and change. Through it all Wendy struggles to understand how and why people act the way they do and how she can learn to “fit” in. Trying to develop friendships with people who thought her behaviours eccentric or just plain weird was fraught with emotional minefields. In Chapter 2 Wendy talks about the how emotions of kindness, intimacy and love can be confusing for a person with Autism because they do not seem to have a purpose. Likewise anger, frustration and disappointment are equally difficult. But Wendy has learned to study postures, voice tones and facial expressions and can now usually figure out what people close to her are feeling. Strangers still remain a challenge. She does make the point that while communication is a difficult thing for autistic people, if we just acknowledge that autistics “operate on a different level of communication – strategies for mutual understanding can be developed” (p.16).
Language is an integral part of the difficulty in understanding and expressing feelings. People with Autism often take the literal meaning of words and phrases and the result can be traumatic or embarrassing. Wendy demonstrates this with a couple of stories. One is of a rare trip with a schoolmate to a holiday caravan park. When told she will be staying in a mobile home you can imagine the turmoil in Wendy’s mind as she struggles with the thought of the home moving around while she slept! Needless to say, the week was disaster with Wendy spending most of her time up in a tree. Building of friendships and social interaction were a nightmare as well when the inability to understand the rules of social interaction created confusion. As Wendy put it “my clumsy efforts to socialize usually ended up in trauma- an experience common to most Aspergers teens” (p.16).
Thankfully there were people in Wendy’s life who were able to touch her behind her glass wall. One was a nurse who took a real interest in her, someone who must have sensed that a quiet, calm manner might sooth and reassure the young girl. Wendy says that nurse was one of the very few people who truly believed in her, allowing her to cautiously let herself share what feeling she could without ridicule. It was a turning point as she finally explored the thought that she was valuable human being. “Thirty years later, she is still one of the most significant people in my life” (p.49), Wendy says.
The following years are tumultuous ones for the author. She is diagnosed as Schizophrenic after two hospitalizations for severe depression. As she left the hospital she vowed she would never allow herself to endure that experience again. “If they think I am mad, then I must prove them wrong” (p.77). She immigrated to Australia with four young children. It was a time of intense emotional upheaval as Wendy dealt with the final breakdown of her marriage and a determination to find more about depression and schizophrenia. Through reading she became convinced that the symptoms did not describe her condition at all. It wasn’t until she reached the age of 42 that she was finally given the proper diagnosis of Asperger Syndrome. Wendy began to feel like she was capable of doing something more positive with her life so she studied hard for 2 years to upgrade her education and was then accepted into university. She was ecstatic and described it as “like being the first person to ever discover gold, or a genie who had the cork pulled out of her bottle – now I was free! I felt the ‘sky was the limit’ and I would fly forever” (p.96).
The end of the book is close now, but not the end of Wendy’s story. Four years have passed at university and much of her day-to-day life is still a struggle as she tries to understand relationships and “get it right”. The last chapter is entitled “It’s My World Too” and in it Wendy describes an incident involving the transformation of a cicada from a dull brown bug into a beautiful, bright creature. That it took 1-½ hours is 280C weather is irrelevant to her. A neighbour coming over to see what the excitement was all about no doubt thought Wendy was a little crazy. I loved Wendy’s response “By choosing to not stand and watch, they missed out on sharing an experience that was so beautiful and exhilarating. A miracle can be happening all around us and no one is aware of it. I know how it feels to be underground, trapped in a silence that vibrates only more silence. I also know the joy of the moment when I have been able to break through the silence and life has made sense to me” (p.115).
Wendy ends her story to date by saying that she has tried to fit in by watching other people’s behaviours and she feels she has made some significant gains in this respect. However, it has come at a personal cost. “This process is hard work and although it helped me to be more observant of others, it robbed me of spontaneity and enjoyment of the richness of my own experience” (p.116). But she also acknowledges that there has been a sense of freedom as well that has accompanied this discover of self and others. Wendy feels life is very good and that she is a valuable person with a place in this world. She has learned to “blend in” while dealing with the daily challenges of being autistic. And she is continuing her journey of understanding and acceptance, by others and herself.
As she says, “My adventure is not finished yet!”