Anxieties of Asperger Syndrome

Parenting Children With Asperger's And High-functioning Autism

Activities for Autistic Children

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Unfortunately the world is fraught with danger for any child. It is a sad fact but we have to teach our children far more than basic safety issues such as safety in the home and road safety. From a very early age both at home and at school, children are taught to say no to strangers, what to do if someone touches them in an unwanted seems that all sorts of sinister dangers lurk around the corner. For any child these are hard messages to grasp but for a child with Asperger Syndrome understanding such abstract messages is as hard as walking on stilts on thin ice (Holliday-Willey 1999).

The difficulties with literality, being unable to adapt a concept for different situations, the problems with facial expressions and body language all make such safety issues a minefield for a child or indeed an adult with AS. I have tried to explain to all of my boys (apart from Ben who hasn't the understanding yet) the dangers of speaking to strangers.. .without much success. I have used computer programmes to illustrate the point, drawn pictures and talked at great length. Joe's answer, and Luke's and Matthew's answer when they were younger, was that ifyou asked someone their name they wouldn't be a stranger any more! Whilst all of the boys have the same kind of language difficulties, Luke with a concrete diagnosis of AS takes such messages to the extreme. As the 'Say no to strangers' message was taught to him at school when he was younger, he then refused to speak to anyone he had not met before. If some kindly person got chatting in a shop and asked him his name, or I took him to a relative's house and he or she had a friend there, he would refuse even to acknowledge his or her existence. Ifa new teacher was at the school or a teacher from another class approached him and asked him a question, he would stand still like a soldier, stare at the floor and not move or speak till he or she had gone. Obviously this got the teachers annoyed, they raised their voices and reinforced for Luke the fact that they were indeed dangerous people! There are no easy answers to such difficulties, though I got around this problem by using a 'secret code' that only the children and people close to them were aware of.

Safety and AS adolescents

This is a topic that cannot be covered by a few paragraphs in a subsection ofa book. It needs a whole book devoted to it. In fact it needs as much attention, literature and education on the subject as is possible. Adolescence in itself, as I have already written, is a minefield, and AS and adolescence is an explosive combination. Our job as parents and carers of our AS children is to pre-empt that explosion and stop it doing any damage - not an easy task!

One thing that all parents are forgiven for thinking is that some of these things get better over time, and in some ways that is true. However, whilst certain concepts may be grasped as a child with AS gets older, these worries are replaced by ones that in many ways are just as, if not more, disturbing. I have already written in previous chapters about issues such as AS and sex, AS and peer pressure and AS and depression, and I am sure all parents would agree that the lack of social awareness is the most worrying aspect ofparenting an AS adolescent.

Whilst adolescence is undoubtedly a difficult time (understatement!) parents may be excused for thinking that they can lighten up on issues such as safety in the home. By the time children reach their teenage years, most parents presume that they have done a good job of explaining the dangers of fires, knives, hot water and poisonous substances. Whilst I have to watch Ben and Joe like a hawk for fear ofthe danger they may get into, in the home I assume that Luke is not likely to go and try to climb into the fire, run himselfa scalding bath or run with a knife in his hand.. .I am right too. Luke is very careful with such things, but one area in which I presumed rather too much nearly cost him his life.

The medicine cabinet in our house is high above the work surface. Either ofthe boys would have to drag a chair over to it and even then Ben still would not be able to reach. Luke however, a gangly teenager, could reach the medicine cabinet but was fully aware of the dangers of drugs and how certain medications could be harmful if taken in the wrong way. I therefore didn't think to have a lock on the cupboard door; it was merely tightly shut.

After two years I still feel sick each time I think about that dreadful day. After two years, I still can't bring myself to let Luke even get himself a vitamin from the medicine cabinet. I still fight back tears whenever I try to recall what happened - he may have healed in every way from his ordeal, but I never will!

Luke and Ben have always suffered from sleep problems. Both have been prescribed various forms of medication in a futile bid to either get them to sleep, or keep them asleep. One particular night I had sent Luke to bed and as usual, got quite frustrated with him appearing every five minutes and telling me he needed a drink, something to eat, to go to the fact anything other than bed! I therefore told him that whatever he wanted he was to sort it out for himself - I will never forgive myself for those words.

Desperate to get to sleep and knowing that there were prescribed medicines in the cabinet, Luke decided that he wasn't at all tired at 1am and would therefore take something to get him to sleep. Both he and Ben had recently been prescribed amitriptyline to help with their sleep problems. One bottle of liquid was prescribed for Ben and it stated that he was to take two and a half millilitres at night time. Ben was then only three years old and extremely tiny, so Luke figured that if it took two and a half millilitres to get a tiny, probably sleepy, three-year-old to sleep, it would take an awful lot more to get a wide awake twelve-year-old to sleep. He therefore took fifty millilitres - a potentially fatal dose.

Anyone who knows anything about the mind of someone with AS will realize that this is actually quite logical. Anyone who knows nothing about AS and Luke's logical mind could be excused for thinking that maybe poor Luke was trying to kill himself. After three days which I can hardly bring myself to think about, let alone write about, the wonderful intensive care staff in Blackpool and Pendelbury hospital saved Luke's life.

He was taken off the ventilator and was surprisingly (to anyone who didn't know him) very matter of fact about how he had come to take too much medicine. He didn't (and doesn't) seem to see the gravity of the situation, how he nearly lost his life and how devastated his family were. Understandable though - after all he does have AS!

After the very young and seemingly inexperienced doctor had listened to Luke's explanation, she then gave me a sideways glance and went out of the room. I have excellent hearing and overheard her talk to another doctor and the nursing staff about how Luke's answers were very wooden and formal and maybe he had been primed to say them. I sat with my heart in my mouth, my mind racing over and over and my knees buckling from under me. She then came back into the room and explained that Luke could not go home as it was hospital policy for people who had taken overdoses to see a psychiatrist.. .poor Luke was devastated. He was tired, he hated strange situations, the hospital lights, the strange smells and the bleeping of machinery, and desperately wanted to get back to his computer. I managed to feign a smile and explain that he had AS and thought rather logically and differently and again the doctor went out of the room. I then overheard her ask exactly what AS was and who had diagnosed it and maybe it would be worthwhile getting access to my medical records too.

How I managed to do so without collapsing I don't know, but I told Luke that I was nipping out to buy him a drink and dashed outside to make a phone call to Mick Connelly, the head of the local complex difficulties team. Hardly able to speak for sobbing, I blurted out what had happened and he managed to calm me down and told me to go back in again and ask them to phone him. When I returned to the ward however, attitudes had suddenly and miraculously changed and it seems that the doctor on the ward had got in touch with our wonderful consultant who had assured her that Luke was neither trying to kill himself, nor had I poisoned him. No words can ever describe how indebted I am to Dr Stevens and Mick for being there for us, and all I can say to any professionals reading this is that children on the autistic spectrum think differently, are often clumsier and less aware ofdanger than other children and therefore, regardless of our efforts to protect them, sometimes our children do get hurt.

For all parents reading this, please, please don't take any chances and make sure that you lock any medications away, however old your children are. We have an ear splitting buzzer that is wired up to be heard throughout the house now, and I am still the only one with the keys to the cupboards. No matter how hard we try, we can never be completely sure that our AS (or any other shade of autism) child fully understands danger, and as far as I am concerned, it is best to take no chances.

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