John Elder Robison, a member of Autism Speaks Scientific Advisory Board, describes his experience learning about and living with Asperger syndrome, which he also details evocatively in his books Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.
What Is Asperger Syndrome?
Asperger syndrome is an autism spectrum disorder (ASD) considered to be on the “high functioning” end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors. Motor development may be delayed, leading to clumsiness or uncoordinated motor movements. Compared with those affected by other forms of ASD, however, those with Asperger syndrome do not have significant delays or difficulties in language or cognitive development. Some even demonstrate precocious vocabulary – often in a highly specialized field of interest.
The following behaviors are often associated with Asperger syndrome. However, they are seldom all present in any one individual and vary widely in degree:
• limited or inappropriate social interactions
• "robotic" or repetitive speech
• challenges with nonverbal communication (gestures, facial expression, etc.) coupled with average to above average verbal skills
• tendency to discuss self rather than others
• inability to understand social/emotional issues or nonliteral phrases
• lack of eye contact or reciprocal conversation
• obsession with specific, often unusual, topics
• one-sided conversations
• awkward movements and/or mannerisms
How is Asperger Syndrome diagnosed?
Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Indeed, many adults with Asperger syndrome receive their diagnosis when seeking help for related issues such as anxiety or depression. Diagnosis tends to center primarily on difficulties with social interactions.
Children with Asperger syndrome tend to show typical or even exceptional language development. However, many tend to use their language skills inappropriately or awkwardly in conversations or social situations such as interacting with their peers. Often, the symptoms of Asperger syndrome are confused with those of other behavioral issues such as attention deficit and hyperactivity disorder (ADHD). Indeed, many persons affected by Asperger syndrome are initially diagnosed with ADHD until it becomes clear that their difficulties stem more from an inability to socialize than an inability to focus their attention.
For instance, someone with Asperger syndrome might initiate conversations with others by extensively relating facts related to a particular topic of interest. He or she may resist discussing anything else and have difficulty allowing others to speak. Often, they don’t notice that others are no longer listening or are uncomfortable with the topic. They may lack the ability to “see things” from the other person’s perspective.
Another common symptom is an inability to understand the intent behind another person’s actions, words and behaviors. So children and adults affected by Asperger syndrome may miss humor and other implications. Similarly, they may not instinctually respond to such “universal” nonverbal cues such as a smile, frown or “come here” motion.
For these reasons, social interactions can seem confusing and overwhelming to individuals with Asperger syndrome. Difficulties in seeing things from another person's perspective can make it extremely difficult to predict or understand the actions of others. They may not pick up on what is or isn’t appropriate in a particular situation. For instance, someone with Asperger syndrome might speak too loudly when entering a church service or a room with a sleeping baby – and not understand when “shushed.”
Some individuals with Asperger syndrome have a peculiar manner of speaking. This can involve speaking overly loud, in a monotone or with an unusual intonation. It is also common, but not universal, for people with Asperger syndrome to have difficulty controlling their emotions. They may cry or laugh easily or at inappropriate times.
Another common, but not universal, sign is an awkwardness or delay in motor skills. As children, in particular, they may have difficulties on the playground because they can’t catch a ball or understand how to swing on the monkey bars despite their peers’ repeated attempts to teach them.
Not all individuals with Asperger syndrome display all of these behaviors. In addition, each of these symptoms tends to vary widely among affected individuals.
It is very important to note that the challenges presented by Asperger Syndrome are very often accompanied by unique gifts. Indeed, a remarkable ability for intense focus is a common trait.
What kinds of services and supports are there for individuals affected by Asperger Syndrome?
There is no single or best treatment for Asperger syndrome. Many adults diagnosed with Asperger syndrome find cognitive behavioral therapy particularly helpful in learning social skills and self-control of emotions, obsessions and repetitive behaviors.
Educational and social support programs for children with Asperger syndrome generally teach social and adaptive skills step by step using highly structured activities. The instructor may repeat important ideas or instructions to help reinforce more adaptive behaviors. Many of these programs also involve parent training so that lessons can be continued in the home. Like adults, many children find cognitive behavioral therapy helpful.
Group programs can be particularly helpful for social skills training. Speech and language therapy – either in a group or one on one with a therapist can likewise help with conversation skills. Many children with Asperger syndrome also benefit from occupational and physical therapy.
Most experts feel that the earlier interventions are started, the better the outcome. However, many persons who receive their diagnosis as adults make great strides by coupling their new awareness with counseling.
In addition to behavioral interventions, some persons affected by Asperger syndrome are helped by medications such as selective serotonin reuptake inhibitors (SSRIs), antipsychotics and stimulants to treat associated problems such as anxiety, depression and hyperactivity and ADHD.
With increased self-awareness and therapy, many children and adults learn to cope with the challenges of Asperger syndrome. Social interaction and personal relationships may remain difficult. However, many affected adults work successfully in mainstream jobs, and some make great contributions to society.
How has our understanding of Asperger Syndrome evolved?
In 1944, an Austrian pediatrician named Hans Asperger described four young patients with similar social difficulties. Although their intelligence appeared normal, the children lacked nonverbal communication skills and failed to demonstrate empathy with their peers. Their manner of speech was either disjointed or overly formal, and their all-absorbing interests in narrow topics dominated their conversations. The children also shared a tendency to be clumsy.
Dr. Asperger's observations, published in German, remained little known until 1981. In that year, the English physician Lorna Wing published a series of case studies of children with similar symptoms. Wing's writings on “Asperger syndrome” were widely published and popularized. In 1994, Asperger syndrome was added to the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-4), the American Psychiatric Association's diagnostic reference book.
There can be considerable overlap in the diagnostic symptoms of Asperger and that of other forms of ASD among children and adults who have normal intelligence and no significant language delay. So-called “high functioning autism” and Asperger syndrome share similar challenges and benefit from similar treatment approaches.
In recent years, such high profile authors and speakers as John Elder Robison and animal scientist Temple Grandin have shared their stories of life with Asperger syndrome. In doing so, they have helped raise awareness of its associated challenges and special abilities.
Asperger Syndrome and Self-Advocacy
Many persons affected with Asperger syndrome take pride in their special abilities. Some take offense at the suggestion that their autism needs to be “cured.”
Prominent self-advocates include Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership (GRASP) and the Asperger Syndrome Training and Employment Program (ASTEP), and self-described “Aspergian” John Elder Robison.
Mr. Robison eloquently describes his take on the wider autism self-advocacy movement in the following excerpt from an article he wrote in Psychology Today.
“Autism is a communication disorder, with a broad range of affect. Some people's autism makes them eccentric and geeky. Other people can't speak at all, as a result of more severe autistic disability.
Therefore, in the world of autism, some of the population is capable of what some call self-advocacy while another part is not. It should come as no surprise that those groups would have very different wants and needs. That disunity of need and purpose is a fundamental issue we must address.
At its heart, self-advocacy is nothing more than speaking up to get what you want. Everyone who communicates does this, all the time. We self-advocate when we ask for different courses in college. We self-advocate when we ask for a chair with a lumbar support at work. …
You may believe your own communication problems will be reduced if the people around you are willing to change their style of engagement to accommodate you, or you may ask that they excuse some of your expressions, which might otherwise be offensive or unacceptable.
Those are all examples of what we call self-advocacy, because the speaker is asking for what he thinks he needs to be successful.”
For more information and resources, please see our Asperger Syndrome Tool Kit for families and this website's special sections on Diagnosis, Symptoms, Learn the Signs, Treatment, Your Child’s Rights and PDD-NOS. These resources are made possible through the generous support of our families, volunteers and other donors.