Are you an adult with Asperger’s syndrome?

The condition now called Asperger’s syndrome (AS) was first recognized in children in the mid 1940s (Kanner 1943; Asperger, 1944). Since that time, children have been the main focus of attention by mental health workers so that most children with AS have been detected and diagnosed in childhood usually in elementary school settings.

It is only in the past decade or so where awareness has increased that AS persists into adulthood. Consequently many adults with AS have gone unrecognized as having AS even though they are experiencing significant difficulties in life due to the condition. The purpose of this post is to provide a description of AS as it manifests itself in adults, to explain the benefits of obtaining a diagnosis, and to provide some up-to-date resources for adults.

The very best introduction to AS in adults that I have come across is a recent interview with Dr. Tony Attwood conducted by Richard Fidler on the Australian Broadcasting Corporation series of podcasts called “Conversations”.

Dr Atwood has a very positive and energetic attitude to the topic of AS. Through such interviews, public talks, and lectures, he has greatly increased the general public’s knowledge about this condition in both adults and children. In typical fashion, Dr. Atwood began the interview by stating “Basically we need person’s with Asperger’s syndrome, they have made major advances to both science and art. Life would be incredibly boring without them.”

Atwood is espousing a new, more positive attitude which has been applied not only to AS but also to another neurodevelopmental condition, Attention Deficit Hyperactivity Disorder (ADHD). Both of these conditions are increasingly seen as normal variations in brain function and as part of the tapestry of life in all its complexity. This view has the advantage in that it avoids unnecessary pathologising and stigmatization of the condition that can worsen the difficulties experienced by persons with AS.

By way of describing AS, Dr. Attwood pointed out that Spock on the famed television series Star Trek behaves like an Aspie (common abbreviation for person with AS) because he deals logically and shows no emotion with things that Dr McCoy, the space ship’s medical doctor, sees as demanding a more emotional response. Although not mentioned by Attwood, numerous other well known people are thought to have AS includes Albert Einstein and Tolkien.

Popular fictional characters such as Sheldon in the TV series, the big bang theory, and Sherlock Holmes also fits the profile of someone with AS. Mark Zuckerberg, the creator of the fabulously popular Facebook apparently demonstrates some of the features of AS in the movie.

However these armchair diagnoses must be taken with extreme caution because the characteristics of AS and their intensity vary widely from person to person and it can be difficult even for trained clinicians to diagnose real life persons as having AS, let alone fictional, historical, or current public figures.

What are the defining characteristic of AS?

There is still considerable disagreement about what criteria should be used to define and diagnose AS both in children and adults. The explanation for this lack of agreement was summarized by Gillberg and Gillberg (1989), “To this day, the controversy has not been resolved as to whether Kanner and Asperger syndromes are separate diagnostic entities or constitute different sections on a continuum of autistic spectrum disorders. Followers of the latter ‘tradition’ tend to view Asperger syndrome … as possibly a mild variant of autism in relatively bright children.”

Listed below are some of the most widely used recognized characteristics of AS. These diagnostic criteria and associated features were taken mainly from two main sources. The first source was a list of features provided by in 1989 (Gillberg and Gillberg) which is consistent with those proposed by Asperger in 1944 and has been used widely. The second source was the Diagnostic and Statistical Manual-IV of the American Psychiatric Association (DSM-IV).

• The person with AS may sometimes be baffled by complex social situations because of difficulty in perceiving subtle social non-verbal cues such as facial expressions and body postures in particular.
• There may be a tendency to take verbal communications too literally or concretely and hence missing the underlying subtle meaning. This can interrupt the usual smooth flow of conversation.
• As a result of these problems the person with AS may avoid complex social situations such as parties, weddings, etc.
• Perhaps as a result of these problems in social communication, the person with AS may fail to develop the usual number of close friendships with peers.
• Another consequence of the social communication difficulties is that they may be perceived as cold and not reciprocating emotionally i.e. lacking empathy.
• The person with AS may have a restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. They can be intensely involved and focussed on things that interest them but that most people would see as rather narrow and restricted e.g. learning the complete train schedule of a city.
• They can have an unusually strong need for routine and consistency and be frustrated and upset by unexpected changes even in things which seem unimportant to others e.g. that the bus arrives exactly on schedule.
• There may be sensory problems such unique and intense sensitivities e.g. unusual tactual sensitivities e.g. to rough clothing that make it unbearable to wear, to foods including not only taste but tecture of the food.
• • There may be motor problems such as clumsiness, awkwardness, or subtle idiosyncrasies in the way the person with moves e.g. walking in an unusual fashion. There may be a unique and unusual quality to speech such as having a monotonous tone.
• The adult with AS may have a strong interest in fairness or justice, sometimes to an extreme degree.
• To differentiate AS from high functioning autism, the DSM-IV stipulates that there be no clinically significant delays in language, or in cognitive development, or in “age-appropriate self-help skills, adaptive behavior (other than in social interaction) and curiosity about the environment…”.

When to seek a diagnosis and advantages of doing so

If you have some of the above characteristics, or even one to a degree that it impacts negatively on your life, then there are three important reasons why you should seek a diagnosis:

• Firstly, if you are diagnosed as having AS, it opens the door to a wealth of resources which are available to persons with AS, such as specialized books, online websites, support and self-help groups, and mental health workers who are experienced in AS and can assist in coping with the various problems common in AS e.g. social difficulties, and finding suitable employment.
• Secondly, if you do have AS, then you are at increased risk of experiencing significant associated psychological problems such as depression, temper outbursts, or anxiety. There is also increased risk for problems in family life, social life, intimate relationships, and occupation or career development. Again there are experienced mental health workers who can assist with these kinds of associated problems.
• Thirdly, educating yourself and your family, intimate other, and colleagues about AS can improve your quality of life.

It is for these reasons that, if you suspect you have AS, you should seriously consider obtaining a formal assessment from a professional mental health worker. Your general physician may be able to refer you to a mental health worker who has some experience in diagnosing AS. It is important to obtain a mental health worker such as a clinical psychologist or psychiatrist who has some experience with AS since it is a relatively rare condition and most mental health workers may not have any experience in assessing or managing the condition.

Resources

Fortunately, if you are an adult with AS, there are now many resources to improve your life so that you can live more happily and productively. Some selected resources are listed below.

The National Autistic Society (UK)
A wonderful list of resources for persons with AS is available from the “The National Autistic Society” in the UK and is available online.

As well as references to AS in general, this website also includes self-help and psychoeducational books on highly useful topics for adults with AS such as social skills, relationships, employment, and mental health. It also has some links to personal accounts of living with AS, lists of dvds on these topics and where to purchase them.

Minds & Hearts‎, A clinic specializing in AS
u6/88 Boundary Street
West End (Brisbane) QLD 4101
(07) 3844 9466
http://www.mindsandhearts.net/

Dr Tony Attwood is an expert on AS who has written extensively on the topic. Two of his most important general books on AS are:
Attwood, T. (2007). The complete guide to Asperger's syndrome. London: Jessica Kingsley.
Attwood, T. (1998). Asperger’s syndrome: a guide for parents and professionals. London: Jessica Kingsley.
Website: http://www.tonyattwood.com.au/
Email: dawn@tonyattwood.com.au

There is an excellent interview with Dr Attwood which answers many questions about AS. This audio interview is very upbeat and its positive message is great for relieving possible concomitant symptoms of depression and or anxiety in persons who are having difficulty with accepting the diagnosis of AS.

References

American Psychiatric Association, 1994. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). American Psychiatric Association, Washington,DC.

Asperger, H. (1944). Die “Autistischen Psychopathen” im Kindersalter. Archiv fur Psychiatrie und Nervenkrankheiten, 117, 76-136.

Gillberg, I. C., & Gillberg, C. (1989). Asperger Syndrome: Some epidemiological considerations. A research note. Journal of Child Psychology and Psychiatry, 30, 631–638.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

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