What is Asperger's Syndrome?
Asperger's Syndrome was first described by Dr. Hans Asperger in a paper published in Vienna in 1944. Dr. Asperger's research was unknown in the English speaking world until the late 1980s, and was not officially classified as a psychiatric disorder until 1994. While Asperger referred to the subjects of his study as "autistic," the syndrome differs from the classical definition of autism as it developed in the US. Some have referred to this disorder as autism without mental retardation.
Asperger's Syndrome is a neurobiological disorder affecting several areas of one's development. In contrast with Autism, people with AS are likely to desire social acceptance, but may be unable to mediate social interactions. Their conversations may be one sided, overly focused on a narrow topic of interest, characterized by pedantic language and monotony. A person with AS would not be able to read the social cues, or body language, of others, and may not be able to sense the feelings of others around them. As a result, one with AS is likely to be considered odd or eccentric, leading to social isolation.
Other characteristics often identified with AS include: poor motor skills or clumsiness; sensory defensiveness; the inability to cope with certain physical sensations, such as particular sounds, smells, or textures; dependency on sameness; inability to cope with change; difficulty with planning and prioritizing; obsessions with specific and limited topics of interest. Given the impairments common to this disorder, individuals with AS are likely to have limited success in maintaining social relationships and considerable difficulty in many work situations.
This is not to say that all people with AS are incapable of leading productive lives; indeed, it is believed that people with AS tend to have IQ's that range from normal to genius levels. Some have speculated that Albert Einstein, among other great scientists, philosophers, artists, and musicians, exhibited traits associated with AS.
As more becomes known about this disorder, professionals and physicians are becoming better equipped to spot individuals who are likely to have AS and evaluate them for diagnosis. This is particularly the case among school-age children, who may be identified because of their inability to adapt to the classroom setting and may be evaluated in accordance with provisions of the Federal special education law, the Individuals with Disabilities Education Act (IDEA) of 1997, and the Massachusetts special education law (MGL Chapter 71B). Adults do not have such services available to them under the rubric of current federal and state laws, leading to lack of diagnosis and, because they may lack health coverage due to unemployment or underemployment, lack of access to medical and other professionals for assistance.
How many people are affected by Asperger's syndrome?
Because AS is fairly new on the diagnostic map in the US, it is difficult to estimate the number of individuals affected by this disorder. A recent estimate based on surveys from the National Institute of Child Health and Mental Development is that 1 in 500 people (0.2% of the general population) have some form of AS; some estimates run between 0.36% and .71%. It appears that AS is prevalent among males by a ratio of 4:1. Because it is a disorder that affects individuals throughout the life span, it cannot be limited to specific age groups, even though it is most easily diagnosed in school-age children.
Asperger Syndrome Fact Sheet
- It is a neurological disorder that affects the way information is processed in the brain.
- AS is a hidden disability. Many people appear very competent, but have difficulties in the areas of communication and social interaction.
- AS has a genetic and hereditary component and may have additional or interactive environmental causes as yet unknown.
- AS is a developmental disability, all individuals have social/emotional delays but continued growth seems to be life-long
- The incidence of AS is thought to be 1 in 250. As many as 50% of people with AS may be undiagnosed.
- There are currently four males with AS to every one female with AS diagnosed with AS but the true ratio may be as high as one female for every two males.
AS affects each person differently, although there are a core set of features that most people with AS have, to different extents:
- People with AS have normal to very high intelligence and have good verbal skills.
- Challenges with the use and understanding of language in a social context
- Trouble understanding what someone else is thinking and feeling (called theory of mind or perspective taking)
- Needing to be taught social behavior that is learned intuitively by others
- Difficulty understanding non-verbal cues such as hand movements, facial expressions, and tone of voice.
- Challenges with organization, initiation, prioritizing, all called executive functioning tasks.
- Focusing on small details rather than the bigger picture
- Most people with AS have intense interest areas such as movies, geography, history, math, physics, cars, horses, dogs or reptiles. These interest areas change every 3 months to several years
- Friendships are usually formed through mutual interest areas or activities
- Most people with AS view the world in black and white with difficulty compromising or seeing the gray areas
- Most individuals with AS describe themselves as feeling different, like aliens in our world
- Anxiety and/or depression are major components for many people with AS and may affect their ability to function
- Some individuals with AS have extreme and debilitating hyper or hypo sensitivity to light, noise, touch or taste. The environment can have a profound impact on their ability to function.
Other elements and traits some individuals with AS have
- Eye contact is difficult, sometimes painful, usually distracting (or if taught poorly, some individuals may stare)
- Some people with AS are clumsy, most have poor fine motor skills although some excel in individual sports
- Some individuals with AS have additional diagnoses, such as ADD, bi-polar, OCD.
- Some have superior skill in a particular area such as painting, writing, math, music, history, electronics or composing.
- People with AS may have difficulties working in a group
- Children with AS may have meltdowns that last between 10 minutes and several hours, when the child is not in control of his/her behavior
- Self-esteem can be an issue for individuals with AS, especially during middle school
- Many are extremely good at memorizing facts and information
- Some like to systemtize the world as a way of understanding it
A Summary of some Basic Interventions that may be helpful for people with AS
- Accepting the diagnosis and leaning how it impacts who you are
- Learn how and when to talk about it to others
- Provide support-for adults in the area of budgeting and housekeeping
- Look very carefully at the social and physical environment to ensure it is tolerable for the person
- Learning social and communication skills
- Learning social behavior
- Working with skills and interest areas
- Use of medication
- Setting up Routines in the person’s life and prepare for tranisiton for all changes
- Minimize transitions and social events with many unknown people
- Provide organizational supports, visual may be better for some people
On July 22nd, 2004, an adult named Susie recounted her particular experiences with AS for Many Journeys: Adults with AS Speak About Their Lives. Those interested in hearing about her past may read our transcript of Susie's Talk here.