From Northern Virginia Magazine:Lively 6-year-old Joey’s an expert in dinosaurs and loves to talk about them, but play dates are a challenge, as his passion prevents other children from sharing their interests. Patrick could read when he was 4 and loves books, but becomes agitated by non-literal idioms, like “raining cats and dogs.” Second-grader Alice cries when the sound of rustling papers and background chatter in the classroom derails her concentration.
Each of these children has been diagnosed with Asperger’s Syndrome (AS). AS belongs to a group of disorders known as pervasive developmental disorders (PDDs), or autistic spectrum disorders. Experts agree that, if you meet one child with Asperger’s, you have met … one child. Each is individual, unique.
Patricia Velkoff of Vienna is a clinical psychologist specializing in lifespan development and family therapy. She describes the differences between Asperger’s and the layman’s view of autism:
“Children with both AS and autism have some degree of difficulty with social attunement and emotional self-regulation. The AS child’s challenges, however, are much less severe. They may isolate themselves when social contact becomes exhausting. They may repeat an idea that excites them even when others are bored. They may insist on their own way and not understand the needs of others. Each of the diagnoses applies to children who do not all look alike; a child’s individual profile must be understood before interventions are designed and implemented.”
According to Velkoff, each child’s diagnosis varies in strengths, challenges and “areas of average skill.” “An AS child, for example, may have highly developed, expressive language and memorization skills.”
Alex Plank (pictured) took the matter of limited information on the condition into his own hands. At age 17, he launched WrongPlanet.net, which now has registered users from Austrailia to Germany. “At the time, there were no resources that met my needs with a positive message of where people like me fit in the world. I wanted there to be a positive environment to help [those with AS] better understand themselves.”
Diagnosed at age 9, Plank is now a film major at George Mason University, and is producing a project interviewing autistic individuals about their experiences. His advice to those newly diagnosed with AS? “Get online, and read other people’s stories. It’s also a good place to make friends.”
Lucia Claster, who coordinates the Asperger Syndrome Information and Support group in Arlington, points out that students with high-functioning autism, Asperger’s syndrome and other related issues often fall through the cracks in school. Each demonstrates the isolating difficulties of being in one’s own world.
“These kids can ‘pass’ as normal in many ways, but not in theirs. Most are of normal intelligence, and some are of superior intelligence in certain subjects, so it seems to outsiders that they should be able to ‘access the curriculum.’ Yet because of
their processing difficulties and social communication skill deficits, they aren’t able to take in information or express what they know in the same way that typical learners do.”
Easily overwhelmed by sensory stimuli that wouldn’t bother the average student, “they cannot focus on their learning.” Classroom behavior deteriorates because they are stressed and anxious, “and teachers see the change as a ‘behavior problem.’”
Claster adds that, instead of giving AS students more support, “teachers sometimes feel the students are willfully acting out and will isolate them, give them a time out, send them to the principal’s office, take away their recess time, which makes these kids even more overwhelmed.”She says AS students need a structured program geared to individual abilities as they progress through “the broadening of academic expectations, and the shift from [fact-based] task-learning in the early grades to more complex education [abstract concepts].”
Philadelphia-based certified relationship development intervention specialist Lisa Kowalski attempts to address the other-world difficulties with social interactions faced by her high-functioning Asperger’s children. “They don’t process much of the non-verbal information that is communicated within social interactions. Frequently they can tell you exactly how they are supposed to respond, but in the moment it’s so hard for them to actually do it.”
Professionals and families agree that people without AS rely on body language to regulate social communication and interpret unspoken implications. Those with AS have problems reading body language and thus become more isolated and misunderstood. “Many of the weaknesses can be remediated with specific types
of therapy aimed at teaching social and pragmatic skills,” Kowalski says.
Autistic Self Advocacy network coordinator Durbin-Westby read at a third-grade level at age 4. Those who grew up before AS could be properly diagnosed tell heroic tales of lonely discovery. Like Plank, many felt they were living on the “wrong planet,” and many have turned adversity into success.
Paula C. Durbin-Westby is Virginia coordinator for the Autistic Self Advocacy Network (ASAN) and board member in charge of the East Coast region. She learned about Asperger’s syndrome some two years ago while at work indexing a scholarly monograph. “I saw the acronym PDD-NOS in a book I was indexing. I looked it up, saw a link to high-functioning autism … I clicked and read my life story.”
Durbin-Westby printed out the description, deleted the word “autism,” and showed it to her husband. “He read it and exclaimed, ‘Wow! What is it?’ in a voice that told me he was discovering the same thing I was.”
By the next day she had read enough about the criteria for AS and associated conditions to know that “I was on the autism spectrum.” And she discovered that “literature by experts … pathologizes qualities that are seen to be different, regardless of whether or not those qualities could also be positive.” Durbin-Westby, born in 1959, knows that a diagnosis today can cause feelings of devastation in parents. Her own parents had “no feelings of devastation at all.”
She joined her first online group for autistic adults and asked, “Would you tell people other than your family and maybe a close friend that you are on the autism spectrum?”
Ari Ne’eman, the founder and president of ASAN, provided her first reply. Then, ASAN was in its early stages of formation, so Durbin-Westby’s journey has always been intertwined with that of the organization.
Ne’eman’s reply: “It depends what your particular situation is. It’s not something to be ashamed of, though, and recognizing who you are may help you. Do what you feel comfortable with, but you shouldn’t be afraid to be openly autistic. I think it’s my right to be open in my neurology and to let my abilities speak for themselves.”
Ne’eman’s assertion reminded Durbin-Westby of the way she had lived her life: “I have never wanted to hide who I am … Every week I read posts by people on the autism spectrum who are trying to fake it, living in fear of making a social mistake that will cause them to lose their livelihood.” She hears from people who are “exhausted both from trying to do the things they need to do to survive and pretend they are something they are not.”
Durbin-Westby’s work with ASAN began seven months after her initial discovery. The organization has a broad agenda, including policymaking, education and outreach, a speaker’s bureau, social and support groups for people on the autism spectrum, as well as non-autistic parents, friends and other family members and allies. Through ASAN, Durbin-Westby made the happy discovery that, “I am good at networking.”
Consequently, she is interested in the proceedings of the National Institute of Mental Health’s Interagency Autism Coordinating Committee. “Advocacy is such a large part of my life.” She also is an organist and choir director, wife and mother.
Durbin-Westby demonstrates the intense interests displayed by those on the autism spectrum. “I was reading at an advanced third-grade level when I was 4.” The ability to read at an early age is common in children on the autism spectrum. Durbin-Westby also began studying piano at age 4.
Charles Bowen, 41, lives in Fairfax with his wife and two daughters. The son of an ordained Baptist minister in Danville, he remembers what he calls his first obsession.
“I have always obsessed on things. A week before my fourth birthday, lightning struck [our] church, and the sanctuary burned to a shell. Well into second grade I would obsessively talk about the church fire.”
Bowen says he was a loner in school, although he did have a few close friends. Puppetry, another of his obsessions, had a positive link: “I met my wife while doing puppet shows at her church in 1989.”
Another special interest triumphed when Bowen’s brother married a woman from Brazil. “I began to study Portuguese,” and found out that he was “an aspiring polyglot,” with a knack for languages. Bowen overcame social-skill challenges by reaching out to those of different languages and cultures. Since 2002, he also has taught English as a second language on a volunteer basis.Charles attributes a work-related plus to his AS: “Office politics go right over my head.”
Martin , 50, who does not wish to disclose his last name, came from a family that emphasized the importance of learning. “My social skills were immature, and emotionally I was detached, more of an observer than a participant,” he says. “I wasn’t used to running with a group. I did well academically until college, when my poor study skills, emotional problems and lack of social graces led to near-failure.” He explains that he engaged in risky behaviors, defying authority. “I was fired from jobs repeatedly. The worst part of it all was the loneliness.”
Today Martin is a computer programmer for a government agency. “AS hasn’t been as much of a problem here as it was in my prior jobs. Much of computer work is solitary. I have a general feeling of acceptance among my peers. I’ve benefited greatly from the stability and independence of this job.”
Psychologist Patricia Velkoff warns of the stress associated with Asperger’s evaluation.As Velkoff points out, “After diagnosis, some parents know what services are needed; for example, help with pragmatic speech.” When parents are not clear about what help to pursue, she recommends asking the evaluator if services are needed with several aspects of care.
Perhaps most importantly, Velkoff stresses that “children with AS benefit from an aggressive program of interventions in all necessary areas at the youngest possible age. This improves outcomes and reduces the gap with their same-aged peers.”
When multiple caregivers are involved regularly with a child (e.g.; parents, extended family and other care providers), Velkoff believes it is “most helpful if each caregiver is included in the treatment process. This helps all become skilled in working with the AS chi.”
Before diagnosis, however, comes the evaluation, a step involving preparation for both child and parent.
“If your AS child may be stressed by the evaluation, you may wish to visit the building with them, and even arrange to greet the examiner briefly, a day or two before the evaluation,” Velkoff advises. “Parents want to find out details such as: whether a parent will be with the child throughout the evaluation, whether snacks are allowed, what kinds of tasks will be presented.”With the help of the ever-expanding number of online resources, information and support, today those with Asperger’s are in touch with themselves and know they are, indeed, on the “right planet.”
Velkoff cautions that “Asperger’s is a new specialty for professionals, with AS included in IDEIA [Individuals with Disabilities Education Improvement Act] only since 1990. Training, experiences and services across professionals vary widely. Think of these as long-term relationships.
“Do your homework about each person in advance so that your time, effort and money are well invested. Keep communication open about what you need and what they can provide.”
The needs of children with Asperger’s change over time as well, so services and providers may need to be flexible as progress is made and new stages are reached.