The ethics of autism: What's wrong with the dominant paradigms and how to fix them
✍ Scribed by Beals, Katharine P.
- Publisher
- John Wiley and Sons
- Year
- 2003
- Tongue
- English
- Weight
- 114 KB
- Volume
- 9
- Category
- Article
- ISSN
- 1080-4013
No coin nor oath required. For personal study only.
✦ Synopsis
Why can't you make him quiet down and sit still?" asks a fellow passenger.
"You've obviously gotten yourself into a pattern of negative attention with him, which is why you're having so many behavioral problems," says a therapist. "Everyone's got their pet cause. At least some leaders have the guts to cut programs," writes a defender of Pennsylvania Governor Mark Schweiker.
"But of course you wouldn't have had an abortion if you'd found out ahead of time that he was autistic," asserts a worried friend.
M ore than the words that told us that something was wrong with our son, gave us his initial diagnosis of Pervasive Developmental Delay, and later pronounced the ultimate verdict of Autistic Disorder, it is these phrases, and so many others like them, that reverberate the most.
Autism is a heartbreaking disorder. It is heartbreaking to realize that your child may never feel empathy, forge deep friendships, fall in love, find an interesting career, nurture children, contribute to society-so much of what the rest of us see as core to human intercourse and happiness. It is heartbreaking, daily, to try to reach through to this person, giving so much, getting so little in return.
Parents are resilient. We readjust our expectations, redefine what being happy and human can mean, revise our notions of social interaction, find creative ways to induce it, and take things one month, one day, or one hour, at a time.
What we have much less control over, what ends up being most difficult about parenting an autistic child, are the various secondary problems of autism that we simply cannot manage alone. These range from broad behavioral and educational challenges, to mundane but no less forbidding puzzles, like how to take our children to the store or doctor's office, keep our houses intact and our kids safe, get enough sleep, and get an occasional break from all the demands of autism, to ultimate conundrums like how to secure and fund care for our adult autistic children when we are no longer able to provide it ourselves. These challenges, in turn, give rise to further problems which have nothing to do with autism per se. For awaiting us, when we seek out the additional help we need, are all sorts of extraneous burdens, from minor but persistent bureaucratic hassles, to long waiting lists and shortages of services, to a demoralizing ethic of patronizing and sometimes sanctimonious judgment about how
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