The three most important words in the village: Understanding, Acceptance, and Accommodation
This past Saturday, I had an opportunity to be part of a panel presenting to a conference audience at UW’s Waisman Center. The topic was autism. David George, president of the Autism Society of Greater Madison (perhaps more familiar to you as your NBC weatherman), moderated the discussion. Also on the panel with me were a male college student and an older adult male, both of whom have been diagnosed as having Asperger’s syndrome.
Imagine a rainbow. On the very left side are non-verbal autistic people, those most “lost” to us, lacking intelligible language or cognitive development. At the opposite end of the rainbow are people diagnosed with Asperger’s syndrome, who are “high-functioning” with average or above average intelligence. The Asperger’s group, by definition, has significant difficulties interacting with other people. They typically have restricted and repetitive interests, and oftentimes their language patterns are quirky or overly formal.
Most autistic people fall somewhere in between the two extremes, at the arch of the rainbow (or bell curve, for you statisticians), where there are significant cognitive and language problems. Many may be educationally mainstreamed if provided special accommodations and early childhood interventions. I do think of autism like a rainbow that begins and ends somewhere beyond our reach. Colors appear distinct but, upon inspection and reflection, they all blur into each other. There are millions of color combinations and possibilities as you travel through the spectrum.
The Autism Society of Greater Madison wasn’t hosting a conference to weigh in on the question of whether or not Asperger’s syndrome even belongs on the autism spectrum (a very hot debate at present). Rather, we came together with the public to promote a better understanding of autism as it is broadly defined. And, we decided, the best way to teach and to learn was to candidly discuss how the elephant in the room looked and felt to each of us.
“How does it ‘feel’ to be autistic?”
That was the first question asked of the two men with Asperger’s. Equally candid, both discussed difficulties making friends before diagnosis, resulting largely from their inability or difficulty reading other people’s facial expressions or body language. Awareness that they were “different,” and that they couldn’t find a bridge to the secret information other people seemed to understand about making friends, was the first intellectual awareness they had that they were not like most other people or even their family members.
However, having Asperger’s also was a blessing, in that it gave them the focus to develop their special talents. The older man became interested in drum-and-bugle music, which quickly led to an obsession with it. “I told my parents, you might as well pay for me to join, because I HAVE to go there and I’m going to go there every day that they practice. I HAVE to do this. And music was a way I could connect to people because we had shared interests then, and I still love music today.” His diligence led to first chair in bugle.
The college student, on the other hand, is very gifted in remembering dates; he can almost immediately determine the day of the week for any date presented to him. If you choose a date that fell on a weekday after March 30, 1964, he also likely could tell you who was on the TV game show Jeopardy! on that date. He knows almost every fact about Jeopardy!; that laser-beam focus, amazing memory, and mastery illustrate a hallmark oddity of Asperger’s.
“What was it like to be diagnosed with autism?”
The older man was diagnosed much later in life, when an inability to make new friends or maintain relationships led to an anger control problem. A “normal” person can only try to imagine the frustration of constantly feeling out of kilter with everyone around you, without an explanation of what you are misunderstanding or how you are making a mistake. Everyone is in on some joke but you. The harder you try to reach out, the farther other people step back.
His unease, and eventual realization that, yes, something WAS wrong with him, ultimately led to a therapeutic diagnosis of Asperger’s. Only then did he get the help he needed to adjust. He now holds a job, is happily married, and has learned how to handle his anger through physical exercise, discussing his feelings, and asking trusted others about social situations that he still finds confusing. “My wife tells me when I make a social gaffe now, and she advises me of a better way to handle it, so that I can understand that for the next time that situation arises.”
Siblings and parents have unique perspectives, too
Because of language and cognitive barriers, it was not possible to have participants who fall on the lower end of the autism spectrum participate in the conference, so their loved ones were invited to speak for them. A female college student and a younger boy shared their experiences as “normal” siblings of autistic children.
The siblings addressed how isolating and socially embarrassing the disorder can be for all members of the family, and yet they also talked about their love for their siblings and desire to have a meaningful and reciprocal relationship with their brothers. (Autism is most prevalent in boys, and both panelists were siblings of boys.) “I don’t like it that my brother gets more attention,” the 10-year-old boy reported. “I get more independence, I guess I get to do more things, but I’d like more attention, too. I’d like it to be more balanced.”
The young woman spoke of feeling sadness about not being able to connect with her brothers, and she also expressed grief about her relationship with her mother. “I have to work harder to understand there is no ‘good time’ for me to call her and just talk,” she said. Since she now lives away from home and her affected siblings are many years younger, her time with her mother is anything but normal. Her mother’s focus is necessarily on scheduling therapists, meeting with special aides, taking her sons to special camps, and attending school meetings.
A father also shared his hopes and fears for his autistic children. He is the father of two kids who were diagnosed in early childhood, and he related how that early diagnosis really changed the family’s quality of life. Autism is a family diagnosis, and it affects everyone involved in ways that are dramatic and, too often, not discussed or too easily dismissed. He recently joined the Autism Society’s board to learn even more and contribute to the advocacy he feels his children will continue to need to be most successful.
It takes a village
The thing that struck me the most was how both participants diagnosed with Asperger’s explained how important it was to educate the public about autism. “It really does take a village to raise a child,” the older man reminded. He wants to be more fully employed and believes that his social awkwardness is holding him back; he isn’t asked to work on some team projects or allowed to work alone on things that could progress his career. He wants to make a bigger contribution, which he feels he is fully capable of making in the IT world. “The more people know about Asperger’s, the more ‘normal’ I will seem – as someone different instead of disabled – and the more I will be given that chance,” he said. (I’m paraphrasing, but that was his message.)
Likewise, the younger man explained how much easier his life was when his progressive-minded middle school asked him to speak to his class about what it was like to be autistic. He said that opened doors “and since then, I’ve had lots of friends who try to help me in new situations, too.” He continues to be asked to speak to groups on autism and, more importantly, to maintain those friendships.
What is needed from the village?
Understanding, acceptance, and reasonable accommodation.
The Autism Society of Greater Madison, headquartered in Madison, serves 10 counties. It’s a no-brainer the volunteers are critical. I joined the board in 2011, and I’m asking you to join a committee or volunteer even a couple hours in 2012. We desperately need help with our missions of direct service, including peer support groups for moms, dads, for people on the spectrum, and we’re joining with the Waisman Center to form a network for grandparents. We need people to help with national and state advocacy. We need volunteers to help gather resources, to make referrals, and to help us educate and support family members of newly diagnosed children and adults. And, of course, we always need help with events and fundraising.
If you would prefer to support the mission in ways other than time, donations are gratefully accepted, and a key way to show financial and/or moral support is to become a member (very affordable at $30 per year).
That’s my pitch and, yes, as you might guess by the fact that I was invited to speak as a panelist too, I have a vested and personal interest in the board’s mission and success.
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