In 1995 the world was witness to an explosion in the number of individuals diagnosed with Autism, especially High Functioning Autism (HFA) and Asperger’s Syndrome (AS). The Center for Disease Control quotes current incidence rates in the United States as 1 in 150, in sharp contrast to previous rates of 1 in 10,000. These rates appear to be consistent world-wide. Young children who received diagnoses of HFA or AS are approaching young adulthood and, due to increasing publicity about autism spectrum disorders (ASD), previously undiagnosed adults are seeking diagnosis and treatment.
So, what is life like for adults who never received intervention? Mr. Tim Page writes one of the most eloquent personal accounts I’ve read to date in his article, Parallel Play (The New Yorker, August 20, 2007). Mr. Page notes that the symptoms of AS include, “early precocity, a great ability to maintain masses of information, a lack of ability to mix with groups in age-appropriate ways, ignorance of or indifference to social norms, high intelligence, and difficulty with transitions, married to a preternatural ability to concentrate on the minutia of the task at hand” (pp. 36-37). “Restricted, repetitive and stereotyped patterns of behavior, interests, and activities,” a hallmark of ASD (DSM-IV TR, American Psychiatric Association, 1994) is cleverly referred to by Page as “monomanias.” He remarks, “Not only did I not see the forest for the trees; I was so intensely distracted that I missed the trees for the species of lichen on their bark” (p. 38).
The second hallmark of ASD is “a qualitative impairment in social interaction” (DSM-IV TR, American Psychiatric Association, 1994). Page notes, “Caring for inanimate objects came easily. Learning to make genuine connections with people—much as I desperately wanted them—was a bewildering process. I felt like an alien, always about to be exposed…deeper emotions reduced me to aching silence” (p. 38, 41). Most teens and adults with HFA/AS acknowledge a strong sense of confusion and despair when it comes to fitting in socially. They are poor judges of character and are socially vulnerable. Social vulnerability and naivete often results in exploitation. Tim Page give us a “bird’s eye view” of the internal experience of individuals with ASD. Reflecting on his life of 52 years, Page recounts “the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity…my pervasive childhood memory is an excruciating awareness of my own strangeness” (p. 36). That he would rather “improvise an epic poem at a sold-out Yankee Stadium” than attend a small social gathering (p. 41), highlights the depth of social discomfort most people with ASD experience.
The current generation of high-functioning people with ASD has benefited from early intervention in some cases and in others, intervention that begins after the average age of diagnosis—still between 7-9 years of age. The types of interventions that have been found most useful for high functioning individuals with ASD have a relationship-based philosophy at their core. This is central to the development of self-awareness, awareness of others, and the ability to participate in reciprocal relationships. Most motivated individuals can “learn” what the rest of us simply pick up naturally, often referred to as the “hidden curriculum”—social etiquette, non-verbal cues, friendship skills, characterization of others’ strengths and weaknesses, empathy, pragmatic communication skills, etc. Although individuals with ASD may not be hard-wired to understand emotions, empathy, and friendship, they can learn to do so. This speaks to the common fallacy that individuals with ASD cannot empathize. The fact that individuals with ASD may not express empathy and emotional understanding the same way that “neurotypical” individuals do, does not minimize their ability to experience deep, personal emotions and empathy.
Intimate relationships between a “neurotypical” person and a person with ASD are almost always fraught with challenges. The partner without ASD often reports feelings of loneliness and deprivation of affection (Attwood, 2007). Many reports of failed marital therapy are a result of clinicians who approach these couples as they would any other couple. According to Attwood (2007), there are three prerequisites for a successful relationship: both partners must acknowledge the diagnosis; both partners must be willing to learn and change; the couple should have access to a clinician who can modify the counseling to “accommodate the profile of abilities and experiences of the partner with Asperger’s Syndrome” (p. 315).
A final and important area of impairment in individuals with HFA/AS lies in the cognitive domain, particularly in the area of Executive Functioning (EF). Much has been written, and research in this area continues to shed light on the types of challenges faced by students of all ages with ASD. Deficits in EF have been the primary reason for many very bright students with ASD to either fail or drop out of college, with social deficits falling closely behind. In order to succeed in college, most students with ASD require many of the same accommodations that students with other learning differences need. However, there are additional supports specific to the student with ASD that will need to be in place for a successful outcome. These include but are not limited to: the broad areas of executive functioning, social concerns, and independent living skills. Fortunately there are many universities and colleges that recognize the need for these additional supports and accommodations and specific programs that include staff training and individual mentoring for the student with ASD are being developed. So far, their success rates are impressive! This type of support may need to extend into the process of securing employment and the individual’s ability to function in the workplace. Community and governmental supports can also be very useful towards this end.
Our society has already benefited from the ideas and inventions of individuals with ASD, past and present. Appropriate programs and interventions will enable people with ASD to maximize their potential, live happy lives, and continue to contribute as university professors, scientists, librarians, researchers, tour guides, military personnel, telemarketers, lawyers, physicians, and more.
(Originally appeared in the November/December 2007 Los Angeles County Psychologist)