Not Stupid. Anna Kennedy

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СКАЧАТЬ Most people have a natural ability to look at someone else and be able to tell whether they are happy, sad or angry. They can guess their age or their status and read the signals given off by the other person. It’s something most of us take for granted but, for someone with Asperger Syndrome, this is often too difficult to do. As a result, communicating and interacting with others is often beyond them.

      People with Asperger Syndrome rarely have the severe learning difficulties associated with autism, and that’s obvious when comparing Patrick to Angelo. Patrick’s language skills – his vocabulary and more fluent speech – are far superior to Angelo’s, although when people speak to Patrick, as is common with people with Asperger Syndrome, he doesn’t always take much interest in what they say to him.

      Many children with Asperger Syndrome are placed in mainstream schools but often they find themselves subject to teasing or bullying. That said, some cope well, achieving good progress, some even going on to further education and employment. Others, like Patrick, just cannot cope and require more specialist, individual attention. However, they are often of average or even above-average intelligence but, sadly, even today, there are few educational facilities for children with the condition.

      Despite his condition, it’s clear Patrick is not stupid, although he has often convinced himself that he is. As with many who have the condition, Patrick’s obsession with dinosaurs and trains has practically made him an expert in each field and it was heartening to read that, because of this side to the condition, many like him can go on to study or work in their favourite subjects.

      The more I read about Asperger Syndrome, the more it seemed I was reading about Patrick. There was his inability to understand a joke; his stilted, exaggerated language and the need to keep sentences clear and concise when speaking to him; the way he excels at learning facts and figures; his lack of social skills or consideration for the feelings of others; and his difficulty in understanding abstract concepts such as religion or literature and nonverbal signals.

      People with Asperger Syndrome usually prefer their day to follow a set pattern – they do not react well to change or delays such as a traffic delay or a late train. They tend to be very punctual and, far from being a handicap in later life, these traits can actually prove to be assets when the child grows into adulthood and is seeking employment. Most employers would welcome an employee who is totally focused on their subject, hates being late, and is dedicated and reliable, wouldn’t they? Of course, all this would need to be balanced by the understanding of employers and work colleagues.

      As for the causes of Asperger Syndrome and autism, well, these are still under investigation. It seems some experts believe there is no single cause for Asperger Syndrome, that it arises from a variety of physical factors that affect the development of the brain. It is not assumed to be caused by either emotional deprivation or a person’s upbringing.

      Autism, it is believed, could be associated with a variety of conditions that affect the development of the brain before, during or soon after birth. Genetic factors are also considered to be relevant.

      So now, at last, I was beginning to understand what Patrick, Angelo, Sean and I would have to spend the rest of our lives dealing with, but one thing common to both conditions was the importance placed on early diagnosis and intervention in order for sufferers to obtain a better chance of appropriate help and support.

      Where on earth was that for Patrick?

      Now, however, I can better understand why it’s so difficult to diagnose autism as the spectrum is so wide. But at least, armed with more information, Sean and I were now in a position to make informed choices for our sons’ wellbeing.

      Of course, so far I have touched on only two aspects of the autistic spectrum’s disorders. There are others, though. The term semantic-pragmatic disorder has been around for nearly 15 years. Originally it was used only to describe children who were not autistic. Features of the condition include delayed language development; learning to talk by memorising phrases instead of putting words together freely; repeating phrases out of context – especially snippets remembered from television programmes; muddling up ‘I’ and ‘you’; problems with understanding questions – particularly those involving ‘how’ and ‘why’; and difficulty in following conversations.

      Children with this disorder have problems understanding the meaning of what other people say, and they do not understand how to use speech appropriately themselves. Soon after this condition was recognised, both research and practical experience yielded two important findings: first, that many people who definitely are autistic have this kind of language disorder – Dustin Hoffman’s character Raymond in Rain Man being a typical example – and, second, most of the children diagnosed as having semantic-pragmatic disorder also have some mild autistic features. For example, they usually have difficulty understanding social situations and expectations; they like to stick fairly rigidly to routines; and they lack imaginative play.

      Research has shown that there is probably a single underlying cognitive impairment that produces both the autistic features and the semantic-pragmatic disorder. The fact that children with semantic-pragmatic disorder have problems understanding the meaning and significance of events, as well as the meaning and significance of speech seems to bear this out.

      The idea of an autistic continuum has been used to explain the situation. All the children on the continuum have semantic-pragmatic difficulties, but the degree of their other autistic impairments can be severe or moderate or mild. This parallels the autistic continuum relating to Asperger Syndrome, where all the children have a marked social impairment but those with Asperger Syndrome have only a relatively mild and subtle language impairment.

      Pathological demand-avoidance syndrome (PDA) is a pervasive developmental disorder which, it is believed, is related to, but not the same as, autism or Asperger Syndrome. Individuals with PDA are typically socially manipulative with people, and, therefore, superficially socially skilled, and this sets them apart from those with autism and Asperger Syndrome.

      The most central characteristic of people who have PDA is their obvious and obsessional avoidance of the ordinary demands of everyday life. This impacts in a very detrimental way in adult life when it comes to, say, meeting the demands of work. People with PDA lack a clear and defined sense of self, and, as a result, do not view themselves as being responsible for their actions. This latter characteristic is particularly significant in terms of social conformity.

      For this reason, a person with PDA is highly motivated to avoid demands and is so able in this domain that they may even appear manipulative as a variety of strategies are used with such determination towards the desired outcome of escaping demands.

      Characteristics are believed to include a continual resistance and avoidance of ordinary demands of life; sufferers may demonstrate surface sociability, but have an apparent lack of sense of social identity, pride or shame; there can be a tendency for rapid mood changes; they might be impulsive or led by a need to control; or they may be comfortable in role play and pretending.

      A person with PDA may present a language delay or obsessive behaviour. They may develop ‘illnesses’ to avoid doing something or deliver an endless stream of excuses. Some ‘normal’ people may admit to doing this occasionally in order to get out of doing something they don’t really want to do, but someone with PDA will do this almost all the time.

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