AAMFT Consumer Update
Aspergers Syndrome

Asperger's Syndrome is a neurologically-based developmental disorder. The exact cause is unknown, but experts believe it is a complex condition involving multiple genetic and environmental components--no one gene or single environmental factor causes AS. Asperger's Syndrome is similar in many ways to autism. These two disorders are grouped together in a category called Autistic Spectrum Disorders (ASD). The disorders are also referred to as Pervasive Developmental Disorders (PDD).

Despite early theories suggesting the possibility, we now know that parenting style does not cause any of the Autism Spectrum Disorders. The number of individuals affected by Asperger's Syndrome is not well known, as an accurate diagnosis can be difficult to make. Estimates are typically reported for the autism spectrum disorders in general, and these range from 1 in 150, to 1 in 1,000 individuals affected. There is a significant gender difference--males receive the diagnosis up to four times more often than females for reasons that are not well understood.

Characteristics

Individuals with AS typically exhibit a variety of characteristics that directly affect their ability to relate meaningfully to others. These can range from mild to severe, and affect three primary areas of development: social skills, conversational language and rigid, repetitive behavior. Specifically, individuals with AS tend to be highly focused on topics of interest to them, often endlessly rambling to anyone who will listen. Their ability to appreciate other peoples' perspectives or to understand the subtle and nonverbal cues of communication (e.g., tone of voice, facial expression) is quite limited, leading them to make frequent social errors. Additionally, demonstrating the usual nonverbal "social graces" of a conversation is often lacking in the individual with AS. They may have difficulty maintaining eye contact, seem distracted, and may not respond with head nods or smiles to indicate they are paying attention, seeming aloof and uninterested.

One of the traits that differentiate individuals with Asperger's from those with autism is language development. In autistic children, language is often absent, lost, limited, or very slow to develop.  In children with Asperger's, however, language development often falls within normal limits. They frequently develop excellent vocabularies, often beyond their developmental age, and their ability to use syntax and grammar appropriately may be unaffected. Yet, these same children have difficulty with the practical or social aspects of language. Family members often report that a child may be able to talk one-sidedly in great detail about something of interest to them, but they do not engage family members in true two-way conversation. Instead, there is limited or awkward turn-taking, and the natural "give and take" in the conversation is missing.

Despite wanting to have friends and engage with others, the awkward attempts and social deficits of individuals with AS often make them the outsider in their peer groups. Young children are often bullied or made the butt of mean-spirited jokes. Older children and adults may simply be ostracized. Their repeated, but often rebuked attempts at friendships, and their painful awareness of their differences from their peers, often lead individuals with AS to develop anxiety and/or depression.

Despite normal or above normal intellectual abilities, individuals with AS have styles of thinking that often limit them and cause them to "get stuck" in how they see the world. They can be quite rigid in their thinking, seeing things in only one way, or they may be very concrete and literal in their thinking, only seeing things in "black and white" terms, with little or no understanding of the more ambiguous "gray" in between--like knowing when and where to apply a rule such as saying, "Excuse me" when you want a turn to speak. They may not recognize the difference in using this to interrupt two adults speaking, versus breaking into a conversation with peers. Individuals with AS have difficulty with uncertainty and are often most comfortable with inflexible routines and rules.

Individuals with AS also have sensory and/or motor problems. They may have an awkward posture or step, have coordination problems, or be uncomfortable with certain sensory conditions (e.g., large crowds, noises, textures). This is similar to individuals with autism, but the degree to which it affects an individual with Asperger's is usually less severe.

Effects on Families and Relationships

There is often a tremendous amount of stress on families (parents, grandparents, siblings) of children with Asperger's syndrome, as well as spouses who are married to adults with AS. Not everyone reacts similarly, nor do all families experience the full range of potential issues, but some of the issues to be aware of include the following:

• Parents may experience a range of concerns and emotions as they attempt to understand what caused the disorder. They may ask, "Was it my fault?" and inappropriately assign self-blame. They may feel guilt and grief over having an individual in their family they love who will suffer a lifelong disability. They may wonder and worry about what others will think, and feel personally inadequate. They may fret about how they will explain AS to their family and friends, what can they do to help, and what financial resources will be necessary to help. And, they may worry about what will happen to this individual in the future, when the parents are no longer there to support him or her

• Siblings may often feel embarrassed around peers, frustrated by not having the type of relationship with their sibling that they wanted or expected, and/or angry that the child with AS requires so much of the family's time and resources at their expense

• Having a romantic or intimate partner with AS can affect the relationship in a number of ways, most notably in the areas of communication and emotional give-and-take. Incorrect assumptions made by the individual with AS often lead to self-protective strategies of distancing oneself entirely and then not responding at all to one's partner. An emphasis by the non-affected partner on expressing feelings is likely to lead to frustration and dissatisfaction

Treatments

Treatments are not cures, but there are a number of different interventions that have been shown to be effective in reducing symptoms associated with AS. There are primarily three different environments for receiving services: schools, the physician's office, and various specialists' offices (including rehabilitation therapists, and mental health professionals). School districts are required to provide a range of services from support in the mainstream classroom to special education classes, depending upon the needs of the individual. A physician's treatment usually involves prescribing medication to address symptoms associated with AS: attentional issues, obsessive-compulsive issues, anxiety and/or depression. Rehabilitation therapists who might be involved with an individual with AS include speech-language pathologists, occupational therapists, vision therapists, and art or music therapists.

Psychologists and marriage and family therapists (MFTs) can be invaluable allies in the treatment process by helping individuals with AS address social skills, thinking skills, family issues, anxiety and depression. Cognitive-behavioral therapy (CBT) approaches can be effective for these issues. In performing couples therapy, MFTs can help the non-AS individual better understand what Asperger's syndrome is and how it affects their spouse/partner. Facilitating realistic expectations in both partners and developing effective communication skills and strategies are primary treatment issues for couples that include an individual with AS.

Where Does Asperger's Syndrome Get Its Name?

AS is a relatively new name for this complex condition first described in 1944 by Austrian physician Hans Asperger. Around the same time, a child psychiatrist named Leo Kanner was identifying individuals with what has come to be called "classic autism."

Resources

There is a wide variety of literature available on the subject of Asperger's and Autism Spectrum Disorders. Five excellent Web sites with general information and links for further information are provided below.

Web sites

www.maapservices.org: A global information and support network for persons with autism, Asperger's and PDD. Publishes a subscription newsletter quarterly

www.aspergersyndrome.org: The Asperger's Syndrome Information support (O.A.S.I.S.) 

www.faaas.org: Families of Adults Afflicted with Asperger's Syndrome (FAAAS) offers information about the impact of AS on families.

www.autism-society.org: The Autism Society of America. Phone: (800) 3AUTISM

www.tonyattwood.com.au: Tony Attwood, a leading researcher, author and presenter on the subject of Asperger's, offers information and links on this informative site.

Publishers focusing on ASDs are Jessica Kingsley Publishers in London and New York (www.jkp.com), and Future Horizons publishers in Texas (www.futurehorizons-autism.com).

Books

Attwood, T. (1998) Asperger's Syndrome: A guide for parents and professionals. London: Jessica Kingsley Publishers.

Yapko, D. (2003) Understanding Autism Spectrum Disorders: Frequently Asked Questions. London: Jessica Kingsley Publishers.

This text written by Diane Yapko, MA.

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