EXPLAINING THE DIAGNOSIS
The diagnosis of Asperger’s syndrome must be explained as soon as possible and preferably before inappropriate compensatory reactions are developed. The child is then likely to achieve self-acceptance, without unfair comparisons to other children, and be less likely to develop signs of an anxiety disorder, depression or conduct disorder. The child can then be a knowledgeable participant in the design of programs knowing his or her strengths and weaknesses, and why they regularly have to see a particular specialist while siblings and peers do not. The child can experience a huge sense of relief to know that they are not ‘weird’, just ‘wired’ differently.
At what age do you explain the diagnosis? Children who are younger than eight may not consider themselves particularly different from their peers and have difficulty understanding the concept of a developmental disorder as complex as Asperger’s syndrome. The explanation for young children will need to be age-appropriate and provide information that is relevant from the child’s perspective. The main themes will be the benefits of programs to help the child make friends and enjoy playing with other children and to help in learning and achieving success with school work. There can be a discussion and activities to explain the concept of individual differences, for example, those children in the class who find it easy to learn to read, and others who find it more difficult. The clinician or parents can then explain that there is another form of reading, namely ‘reading’ people and social situations and that there are programs to help children who have this particular reading difficulty. At present, parents rather than specialists in Asperger’s syndrome are most likely to explain the diagnosis and its implications to a child.
Many books can help explain the diagnosis. Parents can supplement an explanation of Asperger’s syndrome by encouraging the child to read storybooks with the person with AS being the hero. In particular, Kathy Hoopman has written several excellent adventure stories that children and adolescents with AS find fascinating and they identify with the experiences and abilities of the hero of the story.
The Attributes Activity
For children over the age of about eight years, Tony Attwood’s Attributes Activity is used to explain the diagnosis to the child and family, including siblings and grandparents. A gathering of family members is arranged including the child or adolescent who has been recently diagnosed as having AS. Use large sheets of paper attached to the wall or a whiteboard and coloured pens. Each sheet is divided into two columns, one column headed ‘Qualities’ and the other ‘Difficulties’. Usually, the father or mother completes the activity, which involves identifying and listing both personal qualities and difficulties (these can include practical abilities, knowledge, personality, and passions). After the first focus person has made their suggestions written on the paper/board, everyone adds their own. Ensure that this is a positive activity, commenting on the various attributes and ensuring that there are more qualities than difficulties. The child can observe and participate and understands what is expected when the time is for their turn.
Qualities: Honest, Determined, An expert in insects and the Titanic, Aware of sounds that others cannot hear, Kind, Forthright, A loner (and happy to be so), A perfectionist, A reliable friend, Good at drawing, observant of details that others do not see, Exceptional at remembering things that other people have forgotten, Humorous in a unique way, Advanced in the knowledge of mathematics, liked by adults.
Difficulties: Accepting mistakes, making friends, Taking advice, Managing my anger, Handwriting, Knowing what someone is thinking, Avoiding being teased, Showing as much affection as other family members expect, Coping with sudden noises, Explaining thoughts using speech.
Sometimes the child is reluctant to suggest, or may not consider themselves to have many qualities or attributes. The family is encouraged to make suggestions and the clinician can nominate a few suggestions from the knowledge of the person. There will need to be some care when nominating difficulties so that the person does not feel victimized.
The clinician comments on each quality and difficulty nominated by the child with AS and then explains that scientists are often looking for patterns; when they find a consistent pattern, they like to give it a name. Reference is then made to Dr. Hans Asperger who, in the 1940s, saw at his clinic in Vienna many children whose characteristics he observed to be similar. He published the first clinical description that has become known as Asperger’s syndrome.
The clinician may then say “Congratulations, you have Asperger’s syndrome,” and explain that this means he or she is not mad, bad, or defective, but has a different way of thinking. The discussion continues with an explanation of how some of the child’s talents or qualities are due to having AS, such as their special interest, ability to draw with photographic realism, attention to detail, and being naturally talented in mathematics. This introduces the benefits of having the characteristics of AS. The Attributes Activity can be conducted by parents of young children without the presence of a specialist in AS, but adolescents are more likely to accept the explanations from a clinician than parents.
The next stage is to discuss the difficulties and the strategies needed to improve specific abilities at home and at school. This can include the advantages of programs to improve social understanding. Cognitive Behaviour Therapy and/or medications that can help with emotion management, ideas, and encouragement to improve friendships. The clinician provides a summary of the qualities and difficulties and mentions successful people in areas of science, information technology, politics, and the arts who benefited from having the signs of AS in their own profile of abilities.
Hans Asperger wrote: “It seems that for success in science or art, a dash of autism is essential. For success, the necessary ingredients may be an ability to turn away from the everyday world, from the simply practical, an ability to rethink a subject with originality to create in new untrodden ways, with all abilities canalized into the one specialty.” (Asperger 1979)
As Temple Grandin, a woman who has AS and has become a successful engineer, author, and academic, said, “If the world was left to you socialites, we would be in caves talking to each other.”
The Attributes Activity can also be used with adults and family members or a partner. With a couple with one partner with AS, ask the typical partner to explain their love for the partner with AS, and what the appeal was when they first met. This can include physical attraction (the silent handsome stranger) and loyalty, having a remarkable intellect and original ideas, being a man with a feminine side, being a challenge to get to know and, during the time of dating, being very attentive. As with all relationships, over time other attributes become more noticeable and some diminish, but a few of the relationship attributes can be explained as being associated with the characteristics of AS in an adult.
The activity closes with final thoughts on AS. People with AS have different priorities, perceptions of the world, and ways of thinking. The brain is wired differently, not effectively. The person prioritizes the pursuit of knowledge, perfection, truth, and the understanding of the physical world above feelings and interpersonal experiences. They can lead to valuable talents but also vulnerabilities in the social world, and will affect self-esteem.
It is recommended to include descriptions of the person and an explanation of the syndrome on the audiotape.
It is important to discuss who else needs to know the diagnosis. Carol Gray has prepared a program, The Sixth Sense, to explain AS to a class at an elementary school. It explains the five senses and adds a sixth sense, the perception of social cues.
The adult will want to explain the diagnosis to the family, their social network, and work associates. Some adults are more reserved and limit the news to carefully selected individuals. Some chose to have a ‘coming out party’ while others made a special T-shirt with the message ‘Asperger’s and Proud’ of Asperger’s – a different way of thinking. The diagnosis is then very conspicuous.
LONG TERM OUTCOMES
For those with successful outcomes, several important factors can contribute to success.
♦ The diagnosis occurs in early childhood to reduce secondary psychological problems such as depression and denial
♦ The person and his or her family accept the diagnosis
♦ The person has a mentor – that is, a teacher, relative, professional or person with Asperger’s syndrome who understands AS and provides guidance and support.
♦ The person acquires knowledge about AS through reading autobiographies and self-help books written for children or adults with AS.
♦ A parent, partner, or friend is there to provide emotional and practical support, camouflage any difficulties, and provide a life-long commitment to the person.
♦ The person achieves success at work or in the special interest which offsets the challenge in his or her social life. Social success eventually becomes less important in the person’s life, and a sense of identity and self-worth is not measured by companionship but by achievement. This point is illustrated by Temple Grandin: “I know that things are missing in my life, but I have an exciting career that occupies my every waking hour. Keeping myself busy keeps my mind off what I may be missing. Sometimes parents and professionals worry too much about the social life or an adult with autism. I make social contacts via my work. If a person develops her talents, she will have contacts with people who share her interests.”
♦ The person is eventually able to accept his or her strengths and deficits and no longer has a desire to become someone that he or she cannot be. There is a realization that he or she has qualities others admire.
♦ There may be natural recovery. As much as there are late walkers or talkers, there can be late socializers, although ‘late’ can be by several decades. Eventually, the person can achieve his or her life goals.
Professionals and service agencies tend to see children and adults with AS who are having problems that are conspicuous and difficult to treat or resolve, and this may lead to an overly pessimistic view of the long-term outcome. Eventually, the person does learn to improve their ability to socialize, converse, and understand the thoughts and feelings of others, and the accurate and subtle expression of their feelings. The analogy of a jigsaw puzzle of several thousand pieces without a picture on the box can be used as a comparison. Over time, small, isolated sections of the puzzle are completed, but the overall ‘picture’ is not apparent. Eventually, there are sufficient ‘islands’ of parts of the puzzle to allow one to recognize the full picture, and all the pieces fall into place. The puzzle of social understanding and self-acceptance is solved. Many adults with AS, in their mature years, eventually manage to intellectually grasp the mechanism of social relatedness. From then on the only people who know how fluent social integration has been achieved are the person’s family and close friends.
For some adults, the conspicuous signs of AS can decrease over time. We recognize the continuum of expression of autism from the silent and aloof child to the person with AS to the normal range. Some progress to a point where only subtle differences and difficulties remain, The person has progressed to a description of personality rather than a diagnostic category used by psychologists and psychiatrists. ‘Lifelong eccentricity’ may describe the long-term outcome of individuals with AS. The term eccentricity is not used in the derogatory sense. There is always a logical explanation for the apparently eccentric behaviour of people with AS. Many people have friends and relatives with AS. They are best viewed as bright threads in the rich tapestry of life. Our civilization would be extremely dull and sterile if we did not have and treasure people with Asperger’s syndrome.
Sean Barron: “Thankfully, the social connections I so desperately wanted growing up have been made. My relationship with my family is extraordinary. I have a network of wonderful friends, a job as a newspaper reporter that satisfies me at an intellectual level, and a woman I’ve been dating since 2003. All the people in my life affect me in positive ways.”