How I felt labelled as a bad parent
Dr Lorna Gold battled prejudice and stigma for her two Asperger syndrome children
he condition I write about is not an illness. Some, including my affected 12-year-old daughter, would contend it is neither an abnormality nor a disability. Recent estimates suggest it affects at least one in 300, with a male preponderance and a much higher incidence among mathematicians, engineers and trainspotters. Like many health professionals I was only distantly aware of Asperger syndrome. That changed three years ago when my two oldest children were diagnosed as having the condition. Other things changed too, including my acceptance of the notion that disturbed behaviour in children is always the result of bad parenting.
Our photograph album shows Catriona, our oldest child, was born with an intelligent, determined glint in her eye. She was a restless, demanding baby who raced through her developmental milestones as if they were a competition and could converse fluently before her first birthday. We assumed she would thrive in an independent school, and were surprised when she was labelled difficult and disruptive.
By the time she was seven a clinical psychiatrist friend whose advice we had sought informally had suggested Asperger syndrome, but an educational psychologist who assessed her dismissed this idea, describing her as intelligent and understimulated.
Over the next year the situation worsened. She was negative and destructive at home. The school blamed my husband and me. We dreaded the post because it brought aggressive letters from the headmaster almost weekly. These included allegations our nanny was abusing our daughter and that Catriona had made a racist remark to a black classmate, both of which melted into absurdity when scrutinised.
Our child psychiatrist friend suggested a private assessment by a speech and language therapist with extensive experience of, and empathy with, children with Asperger syndrome. She confirmed the diagnosis, arranged for Catriona's care to be continued at her NHS unit, and her advocacy on Catriona's behalf has been a tremendous support.
Once we had a diagnosis for Catriona we could no longer pretend her younger brother was just slightly delayed in developing social skills. Douglas, then five, was pleasant, compliant and academically average, but he had an odd manner of speech, avoided eye contact, and was obsessed with railways. Assessment confirmed he too had Asperger syndrome. We asked for a meeting to discuss this at his school and staff from the language unit provided training.
We then had our only practical experience to date of stigmatisation. The school asked us to remove Douglas, not because he had ever caused problems but because they were afraid he might. Since then he has coped in a mainstream state primary school without individual support.
Catriona's education has been less conventional. She was expelled from another independent school after only three weeks and spent the rest of year five at a behaviour support unit part-time while her statement was prepared. She spent year six in a special school and passed the selective grammar school entrance tests. She now has the distinction of being the first girl with a statement of special needs to attend King Edward VI Handsworth School where they have made every effort to ensure she succeeds, including 25 hours a week classroom support.
Like most parents we assumed our children would be normal, would progress uneventfully through school, choose a career and leave home for a family life of their own. Catriona should be able to go to university and live independently and is more likely to be hindered by her spiky personality and tendency to depression than by her autistic traits. Douglas will be able to work but will need to live in a supervised environment and we are planning to adapt our house.
As the condition is almost certainly genetic, it has other implications. By the time Catriona and Douglas had received a diagnosis we already had two younger daughters. The older of these was obviously neurotypical, but the younger was only a baby and it took several years before we could be confident that she, too, was unaffected. Their unquestioning acceptance of Douglas's eccentricities, and their willingness to engage with his obsessions, has been a great blessing. Although we have no plans to expand the family, the prospect of having another child with Asperger syndrome would not be a deterrent.
We dreaded the post because aggressive letters would arrive from the headmaster almost every week~
· Asperger syndrome is on the autistic continuum. Affected individuals have impaired imagination, communication and social skills but are verbally fluent and of at least average intelligence. Obsessive interests are a common feature children are often attracted to Thomas the Tank Engine.
· The condition is not due to dysfunctional parenting. This myth arose because parents develop a more detached style of interaction, which is entirely appropriate in its context, with children who have autistic conditions.
· Parents of affected children are often undermined from all sides. Telling them you can see they are doing a good job can mean a great deal to them.
· A consultation with an older child or adult who has Asperger syndrome will be more productive if you give clear explanations (including visual diagrams) and explicit instructions.
· Remind affected adults and parents of affected children to apply for disability living allowance.