Sunday, October 26, 2008

Diagnosing a Child With Asperger Syndrome

As promised two weeks ago, this Sunday's post on the subject of Asperger syndrome is about the process of getting a child diagnosed.

As we left it on that occasion, Joe's dad and I had a strong feeling that Joe had AS, having become increasingly concerned about his behaviour and frequent distress, and having read this description of Asperger's which very accurately describes Joe.

His teacher (he was in nursery class at the time) also had sufficient concerns about Joe to have filled in the necessary form. One of her concerns was that he flatly refused to join in 'circle time' (the first child in twenty years of the school's nursery to do so!); another was that he frequently mistook excitement for anger in adults - if she praised something he had done, he would flinch as if being told off.

When I said to her, "He's autistic, isn't he?", she was obviously relieved that I had worked it out and she had not had to break this news to me. She then told me that these days, we call it "being on the autistic spectrum".

The next step was to get our GP to refer Joe for diagnosis. This involved attending the Complex Communication Clinic at the Donald Winnicott Centre in Hackney (which has since been replaced by the all-new Hackney Ark). Joe, John and I all spent time with a Consultant Paediatrician and a Child Psychologist (called, ironically enough, John and Janine). They observed his behaviour and listened to lengthy testimony from us.

They then gave him some tests, the nature of which are quite illuminating about autism and Asperger's. It is important to recognise that they judged Joe's responses not as 'right' or 'wrong' but as 'typical' or 'atypical'. Some examples:

  • They asked Joe, "What is a bicycle?". He replied, "Two sticks, two wheels, three seats". (My bike at the time had a child's seat for Joe and a baby seat for his brother Harrison.) Atypical. Most kids would say, "Something you ride", but the Asperger's kid is more likely to see an object in terms of its components rather than its function. Not wrong, just different - and rather handy if you become a bicycle designer in later life, I'd have thought.

  • They asked Joe, "What is an umbrella?". He replied, "A carrot and a plastic bag". Now that's a bit harder to fathom, but as I explained to them later, he had been playing with Sticklebrix a lot lately, often used the long orange one to represent a carrot and the square white one to represent a plastic bag, and used the long orange one and the square white one together to make an umbrella. Logical, but most definitely atypical. Not wrong, but different - but so different that it is barely comprehensible to anyone who does not know the reasoning behind it. So we can see where those communication difficulties might come in.

  • They showed Joe a photo of a boy with a spider landing on his head and asked him how he thought the boy would feel. Joe replied, "Angry". Atypical: most kids say "frightened". But isn't it actually more logical to be angry with a spider for landing on your head than to be scared of a minute creature that can cause you no harm?!
In all, Joe had a general development assessment, play-based assessment and cognitive assessment at the clinic, plus a speech and language assessment and classroom observation at his school. None of these, as far as I can tell, caused him any distress.

By this time, he was in Reception class and had an Individual Education Plan (IEP) - a written plan which a school can give to a child with problems, issues or special needs, with or without a particular diagnosis.

Joe's diagnosis arrived on the day that his dad was elected National President of the RMT, in November 2006. It is an 8-page document describing their various investigations and observations. The key passage reads,

Joe has been assessed formally and informally over time and in different settings. On the basis of the typical developmental history, clinical observation, information provided by his school and formal assessment of language and cognitive skills, it is our opinion that Joseph's difficulties with social interaction, communication and behaviour are best described as being within the autistic spectrum.

His early language development appears to have been normal and on the basis of his current functioning and the absence of a general learning difficulty, we feel that Asperger's Syndrome best describes Joseph's profile within the autistic spectrum.

Labels: ,