Whilst Luke is one of five teenagers living in the Jackson household, having AS means that he dances to a rather different tune to the rest of the children, so although I have written a chapter later on about 'typically developing' adolescents (Chapter 9), I thought it necessary to write a separate brief section about AS and adolescence. The book Asperger Syndrome in Adolescence, edited by Liane Holliday-Willey, is an excellent read and co-written by many authors (myselfbeing one of them); it gives valuable help and information about virtually every previously untouched topic such as sexuality, depression, making friends and many others. I therefore am not going to say too much here other than I strongly advise parents of AS adolescents to read this book.
There is no getting away from the fact that adolescence is a difficult time for both adolescents and those living with them. Fluctuating hormones, bodily changes, peer pressure, the pressure of exams and the need to find a sense of identity make adolescence an immensely trying time for a young person - indeed it is a trying time for a parent too! At a time of life when peer pressure is at its greatest and social rules and rituals are of utmost importance, an adolescent with Asperger Syndrome is doubly disadvantaged. AS adolescents have so much more to cope with. Not only do they have all the changes that teenagers have to endure, but there is also the growing realization that their attitudes and behaviours are vastly different to those of their peers. As the differences between AS and non-AS teenagers become more and more apparent, a chasm widens between them and AS teenagers often try many ways to bridge the gap, either by trying to assimilate with their peers' behaviour, sometimes taking things too far and engaging in risk-taking and inappropriate behaviour, or by distancing themselves completely and ignoring peer pressure and their peer group completely. A balance needs to be found.
Adolescence for an AS teenager is fraught with hazards. Lack of social awareness and communication difficulties, growing sexuality coupled with sensory issues, all give rise to many potentially dangerous situations and it is our job as parents to help our teenagers to become aware, not only of themselves but of the world around them.
Although adolescents, AS or otherwise, are establishing their own identities and starting to take responsibility for their own actions, this is a difficult time in their lives and sometimes the weight of responsibility is too great. There are no prizes for guessing whose job it is to bail them out when the going gets tough!
In our house we have a system whereby the girls, when they have gone to other people's houses, have a secret code to tell me when they want to come home or whether they want to stay. Often they don't feel capable of saying no when being pressured to sleep another night or stay for tea. That's where I am still willing to step in. When the girls are away, they phone me up from wherever they are staying and the conversation goes something like this: "Hi Mum. Please could I stay another night here?" (Or stay for tea or whatever they are feeling pressured to do.) I reply, "Do you want to or have you had enough?" If they then reply, "Oh no. Why do I have to come shopping with you?" I
know that I have had my cue to go and bring them home. Clear as mud eh? Well it works for us.
These kinds of situations are not such a problem with the boys because Matthew has never wanted to stay at someone's house or go out with them, and Luke, having AS, tends to have difficulty making friends. However he did get invited to someone's house once, was asked to stay over and was quite apprehensive. I had explained our 'code' as best as I could and of course, Luke had heard it in action many times. A couple of hours after Luke had gone to his new friend's house, the phone rang. It was Luke. The call didn't start with "Hi Mum" or even "Can I sleep here tonight?". Luke merely phoned up, within earshot of his new friend and his family, and said "Oh no. Why do I have to come shopping with you?" Ofcourse I realized that Luke was phoning to tell me he wanted to come home, but his friend and friend's parents were completely baffled as to how Luke suddenly knew I wanted him to go shopping! As amazing as Luke is, convincing them that we were telepathic was not viable and so, much to the girls' dismay, I had to explain our code. Yet again, Luke just does not seem to get it!
Not seeming to get it is how most parents would describe their AS child, and whilst they are blissfully unaware in their younger years, often AS teenagers become aware that they don't get it and cannot fathom out what the 'it' is that they are missing.
Whilst Luke wrote a positive and inspiring book telling his perspective as an AS adolescent, what he didn't write was how down and how confused he still gets. He didn't write that he still 'gets lost' on a regular basis and still argues fiercely that it is unnecessary to wash or change his clothes. He still refuses to do homework and as he gets older, the workload is necessitating revision - far too vague a concept for Luke to grasp, resulting in rapidly declining grades. We have had some very unpleasant times over recent months where the presence of hormones, combined with the worries of his increasing awareness of his differences, have caused him to become aggressive, moody and virtually unreachable. After things eventually came to a head and I sat till the small hours of the morning talking to him, it seems that he was questioning the 'meaning of life'. Why are we here? Is he the only one who is real or is he in a permanent dream? What happens when we die or is he dead already? Most AS people would describe themselves as 'outsiders' or 'aliens', feeling that they are in the world but not of it. Whilst an AS adult may adjust (with help) to the fact that this is part of his or her life, an AS adolescent can often have great difficulties with such feelings. I have written this because, as I have spoken to other parents, it seems that their AS adolescents are asking the same kind of questions. I was fortunate enough to be able to talk at length to Luke and alleviate his worries and so I am merely living with the typical moods of any teenager coupled with the obsessions of someone with AS, rather than a worrying mix of both that was plunging him into depression - a very real possibility, and something which is far more common in AS children and adolescents than for others.
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