Part I
Understanding Aspergerās Syndrome
In this part . . .
In Part 1, you get an overview of what Aspergerās Syndrome (AS) is and a little bit about what living with AS is like. For the historians amongst you, we run through the changes in understanding of autism and AS over the years. We explain the current knowledge about the causes of AS in terms of genetics, biology and psychology, and get to grips with the different diagnostic criteria for AS. You can find out about the process of getting a diagnosis in childhood and adulthood, the pros and cons of diagnosis, and what to do after you get a diagnosis.
On top of all that, we review the other possible conditions and psychological disorders that commonly occur alongside AS, such as depression and anxiety. Finally, we explain how women with AS might have different experiences from men. After reading about all of this, youāll have a great overview of AS and be able to think about some of the trickier issues we discuss later.
Chapter 1
Introducing Aspergerās Syndrome
In This Chapter
Finding out what Aspergerās syndrome is
Discovering its history
Recognising what Aspergerās syndrome isnāt
When people first hear about autism or Aspergerās syndrome (AS), they often think about the film Rain Man ā the one in which Dustin Hoffmanās character could memorise all the numbers in the phone book and do difficult maths in his head really fast. Some people on the autism spectrum have these amazing abilities, but not all. In fact, only about one in ten people on the spectrum have a so-called savant skill ā an incredible ability in a particular area. Misconceptions like āall people with autism have an amazing skillā are some of the false impressions of AS we deal with in this chapter.
One thing about Rain Man that was quite an accurate portrayal of the autism spectrum was the characterās dislike of change. He liked to stick to his routines and know what was happening when, and had certain obsessive interests. He also found social interaction hard to understand and sometimes had difficulty communicating. So the film covered some of the key characteristics of the autism spectrum: dislike of change, obsessive interests, difficulty with social interaction, social communication and social imagination.
In this chapter, we introduce you to AS as part of the autism spectrum. You can find out how it was discovered, what life with AS is like and how AS is diagnosed.
Describing What Aspergerās Syndrome Is Like
Describing a person with AS at key stages in his or her life is probably the best way to explain the condition. Weāve invented a fictional character here (called Robert) to help you understand what life is like from the perspective of someone growing up with AS.
Robert as a young child
Robert didnāt like being cuddled as a baby. He didnāt really enjoy playing peek-a-boo with his mother and didnāt smile very much. However, the rest of his development was fine: he learnt to both walk and talk at the right times. In fact, he was really good at language, often using really complicated words that were advanced for his age. Robert was interested in light bulbs as a young child. He learnt the names of each brand and each type of bulb, and had an extensive collection in his bedroom. He could talk about his collection for hours to whoever would listen! Robert didnāt play with other children at nursery school. He preferred to draw pictures of light bulbs on his own, rather than join in with games. At this age, Robert also hated the noise of the vacuum cleaner. His mum had to wait until heād gone to nursery before she could do the hoovering.
People on the spectrum are often extremely sensitive to sensory stimuli; sudden noises, for example, can be a particular difficulty, as can bright lights and certain smells. For more on senses and autism spectrum conditions (ASCs), go to Chapter 12. Like anyone, Robert found changes in his life stressful. And some changes he seemed to find much more stressful than most people did. High stress levels can make anyone suffer and retreat into the safety of routine, and very small children displaying some rigidity which they then grow out of is completely normal. When Robert and his parents moved house, everyone found the experience very stressful. Robertās stress, however, was something special: he wouldnāt come out of his bedroom for days, he made even less eye contact than usual and his hands shook continuously. His desperate need for routine and safety may have started here. His parents had to make sure he got up at 8 a.m. every day, got dressed at 8.05 a.m., brushed his teeth at 8.10 a.m., had toast and jam for breakfast (using exactly the same plate, knife and fork and eating the same brands of bread and jam), and so on. If anything had to change for some reason, heād throw a really big tantrum.
Routine is very important for some people on the spectrum. If youāre a parent looking for more information on routine, see Chapter 9. Robert at school
Robert was bright, so he went to a mainstream primary school. He enjoyed learning but really struggled with break and lunch times. Heād often hit and kick other children who wanted to join in with what he was doing. Heād spend a lot of time standing at the edge of the playground, walking along the lines marking out the football pitch. This habit often got him into trouble when other children were playing football! Robert was still really interested in light bulbs and would switch the school lights on and off when he could, to see how the lights flickered. He was often in trouble with the teachers.
Break and lunch times can be particularly difficult for children on the spectrum. Teachers may need to provide extra support during these periods or provide alternatives to going out in the playground, such as going to the library or a quieter, less busy area of the school. For more information on school and AS go to Chapter 11. At secondary school, Robert became fascinated by history, particularly the world wars. He memorised lots of facts, details of uniforms and dates of battles. In fact, his history teacher used to get quite cross with him because heād shout out the answers to every question she asked in class. He didnāt give the other students a chance to answer. Robert got bullied a lot at secondary school because he was different. Bullies pick on people who donāt have friends because no one tries to stop them. Robert wasnāt interested in girls and didnāt relate to the social chit chat teenagers enjoy. He didnāt understand why the other students would spend ages chatting at break and lunch time instead of doing something constructive like maths or reading about the Second World War in the library. He had one friend with whom he played card games, but the other children didnāt like him because all heād talk about was world wars. Nevertheless, Robert did well at school academically (though he did struggle with English literature and foreign languages) and got a place to read history at university.
People with AS arenāt intellectually impaired. They may be of average intelligence like the rest of the population, and some people with AS are exceptionally bright. Robert as an adult
At university, Robert wanted to make friends and have a girlfriend, but didnāt know how. He liked one girl and so followed her to all her lectures, but the girl got cross and told him to leave her alone. Robert became miserable, because he hadnāt made any good friends, and he wasnāt enjoying lectures. Though he loved history, there were too many people in the lecture hall. Someone would always be coughing, which was a noise he couldnāt stand, and h...
