INSIGHT INTO AN AUTISTIC SPECTRUM DISORDER, by Jen Birch.
Born in 1955, I was raised in rural South Auckland, New Zealand. I loved our cosy little house, kept warm by the Aga coke-burning stove. I spent a lot of time playing on the floor with my plastic dinosaurs and farm animals. In those days, these toys came free in the cornflakes packets.
When I was little, I never learnt to crawl; instead, I propelled myself around the linoleum floor on my stomach, using my limbs as flippers. When I finally began walking at twenty-two months of age, the Plunket nurse’s suggestion of “possible cerebral palsy” was cast aside.
When Mum had to go shopping, with me in tow, the bright, flashing advertising displays then in vogue would cause me to scream in terror, and keep on screaming. Mum had to park my push-chair in such a way that I could see nothing, as anything I saw in shops seemed to set me off.
I was taken regularly to Play Centre, but I wouldn’t mix with the other children, nor would I do finger painting. Sticky substances on my hands or feet are still distasteful to me. I couldn’t catch a ball, I had a strange gait, and had trouble with dressing myself, climbing steps, bike-riding, swimming, all sports, and dancing.
At school I was soon well above my age level in reading and writing, devouring non-fiction books on animals, dinosaurs and prehistoric humans. At the age of seven I asked my teacher for books on Anthropology. Yet, at the same age, when I got a new teacher, I could not speak to her at all, and could not utter the required words, “Good Night, Miss Brown.” For that, I was kept in after school, in a state of panic, still unable to get the words out, until the teacher finally allowed me to write them down instead.
I was an unwilling conscript into the school basketball team, though I could not catch the ball, and had no idea of how the game worked, nor of the concept of team play. On the rare occasion that the ball landed in my arms, this meant terror for me, as both teams would then descend upon me for the ball. In fear and bewilderment, I would get rid of the ball as quickly as possible, not realising that I was supposed to pass it to my own team members and in the direction of our goalpost.
Changing from my tiny country school to the (then) second-largest school in New Zealand – Papakura High School – was a major shock. My academic prowess had put me up a year, so that I was at high school whilst my age-mates were still back at the country school. Therefore, I was on my own in a totally strange environment, (which I find very difficult at any time), confused, and in a state of high anxiety. The concept of changing classrooms when the bell rang was also new to me, and, as I could not navigate my way around the enormous school grounds, I could not find my classes for a few weeks.
My startle response was always very keen: dogs barking, fireworks banging, balloons bursting, brakes squealing, car alarms, sirens, and even soft unexpected noises would severely jangle me, and I could see that other people did not react so strongly to these things. Changes to routine and anything unexpected would (and still can) upset me very much. I found it hard to make friends, and having a conversation was a tortuous business, due to my slower processing speeds, different thought patterns, and lack of a sense of social understanding. Although I could write excellent essays, I could not talk on the phone, nor tie my shoelaces. My difficulties were increasing with age, but I was unable to get any recognition of this, due to the fact that my academic ability was well above average in most subjects.
Reaching the age when my peers and I were entering the working world, I was still very under-prepared to function in this milieu. I managed to hold down jobs for a time, but found social relating, learning new tasks, multi-tasking, and making errors, very stressful. Eventually, I suffered a series of nervous breakdowns, three times ending up in a psychiatric hospital. The second stay was for eight months, and included issues of institutional abuse. My diagnoses then and subsequently included “? Schizophrenia”, “? Borderline Personality Disorder”, “Manic Depression”, “Anxiety Disorder”, and “? The Beginning Stages of Multiple Personality Disorder.”
Far from helped by these experiences, I continued to struggle on with anxiety, depression and confusion during my thirties. My inability to read facial expressions, body language, tone of voice, and whether people were joking or not, meant that I often made incorrect judgement calls. I told my Mum that I felt like “an alien from outer space.” I drew some comfort from my passions of reading, libraries, and poultry keeping. I knew that I was still good at studying, so, in my late thirties, I decided to take a Bachelor of Arts paper at the University of Auckland. I loved it so much that I kept going, eventually enrolling for full-time study, supported by the Adult Student Allowance. At the age of 39 I also met a man who was able to love me in spite of my oddities. We live far apart and still have our unconventional, long-distance relationship.
Meanwhile, back on campus, I attended all the lectures in my own subjects (German, Comparative Literature, Linguistics, Anthropology, English), and any others I could fit in. Near the end of my B.A., I turned up for a seminar by Dr. Angela Arnold of the Department of Psychology, having no idea of what I was about to hear. Dr. Arnold described a particular developmental disorder which affects one in every 300 persons, world-wide, and listed its characteristics.
Shock waves hit me and I started shaking. Afterwards, I managed to “grab” Dr. Arnold before she left the room. We arranged a formal appointment and it became official: I have Asperger Syndrome, (a form of Autism), diagnosed at the age of 43. A lifetime burden of inadequacy, guilt, confusion and fear was lifted from me.
I graduated with my B.A. in 1999, and began voluntary work in the field of Autism Spectrum Disorders. For the first time in my life, having Asperger Syndrome was a PLUS, because my “Insider Knowledge” meant that I was now an advisor and consultant on the condition. I have given training sessions for parents and teachers, participated in New Zealand’s TV One documentary about Autism and Asperger Syndrome, and gave the Keynote Speech for the Auckland Autism Conference and the New Zealand National Conference in 2001-2002. My contributions to Autism Spectrum awareness have been received enthusiastically in New Zealand so far. To provide a written resource for people to refer back to, I then wrote a book: “Congratulations! It’s Asperger Syndrome”, launching it at the N.Z. National Conference in 2002. This year, it has been re-published in London, and is now available world-wide. The N.Z. Listener magazine reviewed it in its Health Column on 7-6-03, and the University of Auckland News in its May 2003 issue.
My book includes the following topics: childhood characteristics of higher-functioning autistic conditions; my childhood in rural NZ of the 1960s; description of higher-functioning autistic conditions as they manifest in the child, teenager, and adult, (including diagnostic criteria); my insider perspective of cognitive differences and how they influence behaviour; fundamental identity issues; social skills deficits; motor skills and co-ordination difficulties; obsessional interests; medical and social issues in N.Z.; the helping professions; the psychiatric hospital; misdiagnoses and incorrect treatment which can mistakenly be applied to Autism Spectrum individuals; the vocational training course; entering the workforce; getting a university degree; adult relationships and sexuality; revelations; my life now; the reasons for diagnosing Autism Spectrum Disorders; implications of non-diagnosis, late diagnosis and misdiagnosis; how Autism Spectrum Disorder can interweave with other medical and developmental issues, thus causing complications; high-functioning Autism Spectrum through the life span; my foray into Evolutionary Psychology; positive aspects of living on the Autism Spectrum – celebrating difference, (hence the book’s title); helpful hints for others on the Autism Spectrum, and our helpers; glossary and notes on the Maori language; bibliography and suggestions for further reading.
This book is essential reading for anyone working with adults on the Autism Spectrum – including, of course, those people who do not REALISE that they are working with individuals on the Autism Spectrum! -- because at the rate of one person in every 150, world-wide, having an Autistic Spectrum or Related Disorder, all professionals are working with us, whether they know it or not.
“Congratulations! It’s Asperger Syndrome”, by Jen Birch. JKP Publishers, London, 2003. (288 pgs).
In the U.S.A.,
In the U.K:
I can be contacted on Email: