Asperger Syndrome – Part One

This is my account of living with a child with Asperger Syndrome. My son who is now almost 15 was diagnosed with Autistic Spectrum Disorder and Dyspraxia when he was 10, but his problems were obvious since he was very young. I want to write about this because it is a a hidden and much misunderstood disability, it is difficult for the child to cope, but it is also difficult for the family. There have been many occasions when well meaning people have made me feel that my son’s problems were in some way my fault, but thankfully he was not my first child and his older siblings were doing very well, so I felt that my parenting skills must be OK.  

There were little clues that my son was different from very early on, he didn’t sleep through the night until he was 3 and even then he had a tendency to get up at night and go downstairs to play, the Health Visitor had him on sleep diaries and all sorts of things. This behaviour got more difficult as he got older as it was harder to contain him. He had all sorts of rituals and odd behaviour. This involved sorting Lego bricks into lines, removing the seats and cushions from the lounge furniture to create sepping stones so that he never had to tread on the carpet and turning the knobs on the washing machine so that they all pointed the same way (he boiled my washing on many occasions). He was totally non compliant with developmental tests and he screamed every time he went to the doctor’s surgery. The health visitor suspected Asperger Syndrome at that stage, but a decision was made not to test him until he was older.

He coped fairly well at his first Nursery Group (from age 2yrs 9mths) the sessions were only two and a half hours a couple of times per week, he wasn’t too good at mixing and joining in, but he seemed to enjoy the various craft and play opportunities. When he went to the school nursery class (aged nearly 4) I had to withdraw him because he couldn’t cope. He was terrified, he claimed that one teacher shouted at him (true I think) and he cannot cope with being shouted at. He stayed at his previous nursery group, then he joined the Reception class at primary school. Even at his nursery group he would not join in certain activities and he showed signs of unusual thought processes, e.g. asking questions like “Why do rabbits do round poos and dogs do long ones?”

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He has always been obsessive, having pet subjects that he researches in infinite detail, at present it is horror films, previous subjects have included Superman, James Bond, dinosaurs, certain events in history, hamster reproduction and various others topics. He is and always has been very literal, I remember him having a massive tantrum because there was no ice on the iced bun I bought for him and I had to fetch him from his nursery group once because he was devastated when someone said it was ‘raining cats and dogs’. He still has difficulty recognising the meaning of such phrases and this can cause him significant distress. Even now he struggles to understand irony and he sometimes has to ask why a joke is funny, but he is better than he used to be. Often he will label his speech especially when making some attempt at humour e.g. “this is sarcasm” or “this is a joke”.

His rituals have always involved clothes, when aged about 3 he insisted on wearing a shirt and tie all the time and he still refuses to wear a jumper or coat (however cold he is). He had a phase of about 18 months when he constantly wore a tail (a belt, tie, scarf or a toy tail). He has always had a passion for dressing up and this continues in his obsessive interest in creating lifelike wounds and scars with stage wax.  In many other ways he hates to be the focus of attention and he avoids having to go up for awards in school assembly. He hates being looked at and cannot cope with being laughed at (e.g. if something he says makes me laugh). When he started school he had to colour code his pants with the PE mats that he expected to use that day. Even now he can only do well in an exam or test if he is wearing his favourite underwear. It really does seem to influence his outcome so it must have something to do with him believing in himself.

He loves facts and reads almost exclusively non fiction. He read early and has been good at getting info from various sources, e.g. newspapers, radio, internet, reference books and conversation. He still finds fiction more difficult, but earlier in his school life books like ‘Cat in the Hat’ made him cry because they didn’t make sense. He can’t bear things not to make sense, he finds it terribly disturbing. He has always been very articulate and knowledgeable for his age but he can’t manage abstract thought. On the surface he is bubbly and outgoing but he struggles with one to one encounters unless he is talking about one of his pet subjects. His social skills are not as good as people assume. He doesn’t pick up on signals from people he is with, he doesn’t truly interact with people, it is all superficial and he often misunderstands people’s motives. He hates talking about feelings or emotions and avoids any discussions about such things. He is very rigid in his thinking, he is very black and white and unable to change his opinion as a result of reasoning. Once a thought is fixed in his head he hangs on to it however irrational e.g. believing that his maths teacher was a witch because she had a mole on her nose. Even now he has not quite established what is real and what is fantasy e.g. partly believing in witches having magic powers and could harm him.

Several events spring to mind. When he was 6 I came downstairs one night to find that he had got both hamster cages on the floor and open. I asked what he was doing and he said he had been mating the hamsters, he explained that he had read the breeding chapter in the pet book and he had checked that they had done it properly. He knew exactly when to expect babies, but thankfully no babies arrived. A few days later I got up and found him reading the chapter on reproduction out loud to the hamsters so that they would get it right next time!! 

Continued in Part 2

Asperger Syndrome – The Diagnosis