The AS person has often spent an inordinate amount of time fixated on one particular (often peculiar) topic, and when that person is in a social environment, he or she tends to ramble on about the topic and that one-sided rambling is more important to that AS person than any other activity in a social setting, Woodbury-Smith writes on page 4. According to Woodbury-Smith, as the AS person gets older, the tendency to focus obsessively on one particular topic is increased, “and they can be debilitating in terms of frequency of engagement as well as degree of distress that they cause the person and their family” (Woodbury-Smith, 2009, p. 4).
The “gold standard” as far as a diagnostic approach to determining autism vs. AS is through use of ADI-R (based on autism interviews) and of ADOS (“autism diagnostic observation scale”). The ADI-R amounts to a “semi-structured interview” between a person believed to be autistic and that persons caregiver. The ADOS, like the ADI-R requires specific training for the person conducting the research. The ADOS is also “semi-structured” and it is an interactive session rather than just an interview, and play is usually part of the session.
Evaluating young children — as to whether they have AS or autism — “can be tricky,” according to Dr. Leon Hoffman, writing in the “Letters to the Editor” section of the American Journal of Psychiatry. Hoffman, writing in response to an earlier published article on Aspergers syndrome in the same journal, asserted that when assessing children the clinician should not focus on the “exact categorization” of the child, seeking the ideal niche or grouping he or she might be placed in (Hoffman, 2009, p. 235). Rather, Hoffman goes on, the clinician should “evaluate the nature of the childs social interactions with parents, siblings, relatives, and other children and significant adults as well as how others interact with the child” (p. 235).
In other words, it is sometimes “tricky” to tell the difference between a child with autism and one with AS, but the clinician / researcher needs to understand “the nature of the childs responses” to sensory stimuli (Hoffman, 2009, p. 235). Also, the clinician should understand whether the childs responses are appropriate, under-reactive, or over-reactive, and evaluate those responses in the context of the childs language development, memory, fund of knowledge, and “ability to understand social situations” (Hoffman, 2009, p. 235). Moreover, Hoffman continues on page 235, the clinician should evaluate the degree to which the child feels “internal conflict in contrast to conflict with other people” — and the degree to which the child can differential his or her fantasy life from true life experiences.
The Yale Child Studies Center spells out the specifics of AS in easy-to-understand language. The DSM-IV definition of Aspergers syndrome is: a) a qualitative impairment in social interaction, manifested by “at least two” of these issues: impairment in the use of eye-to-eye gaze, body language, facial expressions and gestures; poor peer group relationships; lack of spontaneous enjoyment with other people; and inability to reciprocate socially or emotionally; b) repetitive behaviors, interests, and activities, manifested by one or more of the following: abnormal preoccupation with a particular interest or focus; a seeming inflexible insistence on certain routines or rituals; repetitive “motor mannerisms” such as “finger flapping or twisting or complex whole-body movements”; or “persistent preoccupation with parts or objects”; c) significant “impairment” in several areas of functioning (social, occupational, et al.); d) there is no clinically significant delay in “cognitive development or in the development of age-appropriate self-help skills; e) there is no clinically significant delay in language development; and f) the criteria for Schizophrenia or PDD are not met with AS.
Chapter Two — Literature Review
What is known about the kind of suffering AS individuals go through? What is known about the likes and the dislikes, and the day-to-day living challenges of people with AS? Gena Barnhill writes — referencing a study of 12 men with AS (ages 18 to 21) — about health dynamics in the following areas: they feel a general and near-constant fatigue; they experience “discomfort and pain”; they dislike their dependence on medication and medical treatment; their work capacity, mobility and lack of energy is a source of embarrassment (Barnhill, 2007, p. 120). Barnhill also alludes to sensory challenges that AS sufferers go through.
First of all there is pain that individuals with AS suffer from but have a hard time explaining to doctors, “which makes it difficult for doctors to treat” them, Barnhill continues (p. 120).
Moreover, as to sensory challenges, young people with AS contend with sensitivity to noise, “oversensitivity to touch, and difficulties with rhythm” — all of which lad to “behavior problems” (Barnhill, 2007, p. 120). Some of the sounds that persons with AS have to endure “can actually hurt a persons ears, and he or she may be fearful of anticipated noises and hum or make other noises to block them out,” Barnhill continues on page 120. Beyond sensitivity to sound and touch, individuals with AS are also frequently described as “clumsy” and demonstrating “ill-coordinated gross-motor movements”; also they tend to have odd or poor posture and an awkward gait when they walk (Barnhill, 2007, p. 120).
Barnhill asserts that very little research has looked into whether neurological problems persist in AS individuals as they leave adolescence and reach adulthood, but at least one study referenced by Barnhill (p. 120) does indeed report that shortcomings in motor skills appeared to differentiate adults with AS from adults that do not have AS. Lack of sleep is another typical symptom for those who have AS. Barnhills son, Brent, whom she mentions frequently because he has AS, has suffered from lack of restful sleep most of his life. Brent tries to find part time jobs that he can report to in the afternoon, because early in the morning he often has not had enough sleep.
“He told his boss many times that he would be at work the following day,” Barnhill writes (p. 120). But due to “the fatigue and physical discomfort that he frequently experiences, he was unable to work as he had promised,” Barnhill continues. But the good news was that Brent worked for an organization that offers services for people with developmental disabilities, and hence, they were supportive of him and did not fire him because of his inconsistency with reporting on time.
Another major hurdle for AS young people is “making friends and establishing intimate partners,” Barnhill explains (p. 121). Of course those with AS wish to have friends, and romantic relationships, but they “tend either to approach others in an inappropriate physical or verbal manner,” or they also may “misread subtle social cues or body language,” the author goes on (p. 121). Sometimes the blunt or awkward actions by AS individuals is misread as sexually-motivated overtures, when in fact that was not at all the intention, according to Barnhill. Since many of individuals with AS did not receive sex education, they tend not to know how to establish a romantic relationship and once in such a relationship they dont understand how to behave.
Barnhills son Brent has met several potential female friends on the Internet, and often he meets people in person who are “savvier than him” and they try to take advantage of his naivete; also, when he actually meets a date face-to-face he “has misread their intentions and at times offended them with his comments without being aware that this was the case” (Barnhill, 2007, p. 121). Individuals with AS can quickly find themselves in situations that make them vulnerable, and they dont even know they are vulnerable because the world is passing them by from a social interaction point-of-view.
AS from an Individuals Perspective
An article in the journal Autism asserts that despite the considerable research done on the syndrome, “Only a handful of studies” have been-based directly on “the perspectives of [AS] individuals themselves” (Muller, et al., 2008, p. 174). And so the authors conducted interviews with eighteen individuals with Aspergers syndrome. The participants had been formally diagnosed with AS (“or other ASD or an informal diagnosis of Asperger syndrome based on DSM-IV criteria”), were at lease 18 years of age, had self-reported difficulties with “social cognition” but had no diagnosed “mental retardation” (Muller, 2008, p. 174). Thirteen of the 18 were diagnosed “formally” with Asperger syndrome, two were “informally diagnosed” with Asperger syndrome, two were “formally diagnosed with high-functioning autism” and one was “formally diagnosed” with PDD (Muller, 2008, p. 175-76).
It should be mentioned that these 18 participants were recruited by telephone.