By Lisa Agnew
When, at two-and-a-half years old, my daughter Caitlin was tentatively diagnosed with Asperger’s Syndrome, I had a shuddering, almost cathartic moment. As the pediatrician went through the symptoms of the condition, I was gradually putting two and two together, realizing that this syndrome, this condition, this word, was something that had haunted the female side of my family for three generations. Now my daughter had a label for this predominantly social affliction. Yet would it help her cope any better than her forebearers had coped, I wondered?
Asperger’s Syndrome is a milder variant of Autistic Disorder and both Asperger’s Syndrome and Autistic Disorder are subgroups of a larger diagnostic category called Pervasive Developmental Disorders (PDD). In Asperger’s Syndrome, affected individuals (proportionally more likely to be boys than girls – my family seems genetically aberrant in this way) are characterized by social isolation and eccentric behavior in childhood. There are impairments in two-sided social interaction and non-verbal communication. Speech, though grammatical, can be thought of as peculiar because of abnormalities in inflection and a repetitive pattern. Clumsiness is often prominent in both articulation and gross motor behavior. Sufferers will sometimes exhibit a circumscribed area of interest which usually leaves no room for more peer relevant interests. Hans Asperger was the Austrian physician who first described this syndrome in 1944.
Often attendant with PDD is Attention Deficit Hyperactivity Disorder (ADHD), which manifests as a pronounced difficulty in focusing attention, hyperactivity and impulsiveness. Almost 60-70 % of children with PDD have severe enough inattention, hyperactivity and impulsiveness to meet the diagnostic criteria for ADHD. Technically, if a child is diagnosed with any of the PDD diagnoses, a separate ADHD diagnosis cannot be made, as with my daughter Caitlin.
The above mentioned medical conditions are among a number of ‘behavioral’ conditions now frequently diagnosed. Children who, in ages past, may have been called ‘shy’, ‘geeky’ or ‘eccentric’ are now labeled with newer, less immediately descriptive words. Yet children with these labels, some of them barely more than toddlers when they are diagnosed, still face a lifetime of being pigeon-holed. Whilst these labels make it much easier for parents to access various medical and other services, I often wonder what it does to the children’s sense of themselves.
My own experience of a childhood crippled by what I thought was chronic shyness may not help my daughter, as she exhibits none of the usual social timidity that goes with the Syndrome. Yet she is not able to properly interpret social interactions and has the inattention, hyperactivity and impulsiveness attendant with ADHD, something which her mother did not manifest as a child. Children with Asperger’s Syndrome become adolescents and adults with Asperger’s Syndrome. Nobody grows out of the condition, but they can learn to utilise strategies which help negate the Syndrome’s impact. This is where the ‘label’ comes into its own and provides access and guidance to teaching strategies that were not only not available but not even conceived when I was a ‘shy’ child. Whilst my own mother and I were forced to come up with autonomous coping mechanisms, with varying degrees of success, my daughter is given assistance with schooling and social development. As her mother, I was initially worried about Caitlin being marginalized by her peers, something I had experienced in school days, especially the teenage years. These fears have so far been unfounded, as the culture fostered within education institutions now is a far cry from what it was in the late ’70s.
Some medical and even educational facilitators advocate early chemical intervention with the more severe cases of PDD and ADHD. These children can be hard to handle, as I can attest. Ritalin seems especially favoured by medical practitioners, yet I have resisted this route for my own child. Asperger’s Syndrome can bring unexpected gifts as well as trials. An Asperger’s child will more than likely be of above average intelligence and may be able to siphon his or her creativity when involved in a circumscribed area of interest, morphing it into something of merit (Bill Gates is rumoured to suffer from Asperger’s Syndrome). It is the ADHD factor that drives some parents to seek out the more even-tempered, pliable offspring that is born, one can say almost reborn, after a very short time on Ritalin. Whilst I have the utmost sympathy for those who seek recourse in medication and would never actively chastise their choice, I am left wondering whether it robs the child, strong-willed for whatever reason, of a trait that may one day carry them some way to success. All children need help to focus their attention and curb youthful impulsiveness. That is part of our job as parents. Though our social responsibilities to society have changed over the decades, in that we often have to work longer hours and dedicate chunks of time to other causes, the core job of parenting has not changed. The stresses of modern existence impact on family life in very subtle ways. Hard-to-nurture children may be side-effects of this, but I suspect that they have always existed and it is our ability to cope with them that has skewed off-course.
None of the above changes the fact that the child labelled with Asperger’s Syndrome, ADHD or any of a clutch of modern monikers needs all the help we are able to give him or her. Any diagnosis on the autistic spectrum can lead to isolation and loneliness, especially in those crucial teenage years. Naming things is an intimate part of the human nature. Labelling, whether with medical diagnoses or cruel victimisation, inevitably happens. It is perhaps better for today’s children to become used to the relatively benign medical labels that have proliferated in the last half century or so and thereby comes to terms with it, working through any grief or other feelings early on.
I know that I never want my daughter to become what her grandmother became – a virtual prisoner to her social phobias. I did a little better, fighting my way through a social mire of what to me were perplexing shadow games, ultimately taking refuge in my writing. Caitlin has an active imagination – something with which most Asperger’s children are gifted. It will perhaps guide her towards a satisfying career choice in the future. Yet, at seven years old, she has a way to go before then. I can only hope that this knowing – this label of Asperger’s Syndrome, that for better or for worse, she has now been given – can empower her in the same way that not knowing the name of the thing which lurked within consequently haunted me.
A list of 126 U.S. clinicians who evaluate individuals with Asperger’s Syndrome can be found on R. Kaan Ozbayrak’s excellent website, www.aspergers.com which is a good source of information for those seeking answers to their questions about Asperger’s Syndrome and other Autistic Spectrum Disorders.
Lisa Agnew is a freelance writer based in Auckland, New Zealand. Her main focus is the writing of speculative fiction, evidenced by her first novel Sword: Tales from the Green Sahara, ISBN 1904018173, available on relevant book-selling websites and the author’s own site at www.writingrealm.com. Subjects close to her heart include history, esoterica, Fortean subjects, anthropology, astronomy and parenting issues, some of which have been subjects for non-fiction articles in The Internet Review of Science Fiction, Timetravel-Britain.com and Fate Magazine. She has also written for IN (Inkwell Newswatch), an on-line magazine for writers, The Book of Dark Wisdom, City Slab Magazine, Andromeda Spaceways Inflight Magazine, Paranoia Magazine and This England, an English magazine highlighting the delights of rural Britain.