From the Sacramento Bee:

Parents and disability advocates say they’re worried about the tidal wave of young people with autism who are moving toward adulthood in a society unprepared to meet their needs.

Nationally, it is estimated that some 380,000 people will need extensive adult autism services by 2023, and the pricetag for their care will be in the billions of dollars.

“The financial impact will be huge,” said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. “Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, ‘Who is going to take care of my autistic child after I am gone?’”

See also: Book review of ‘Boy Alone’, by Karl Taro Greenfeld — Paul Collins in the [Portland] Oregonian. An excerpt:

Society makes some strange demands upon autism. We expect a cure: something you rarely hear mentioned next to conditions like Down syndrome or retardation. For them, a sensible emphasis has been placed upon prevention in the future, and respite and amelioration in the present. (more…)

Paul Lombardo, author of “Three Generations, No Imbeciles,” has spent almost three decades uncovering the full story of the 1927 Buck v. Bell Supreme Court decision, writes USA Today.

In 20th-century America, more than 30 states passed legislation supporting forced sterilization as part of a program of eugenics, the “science” of human improvement through controlled breeding. Official tallies say more than 65,000 Americans were sterilized against their will.

Buck. v. Bell upheld the right of the Virginia State Colony for Epileptics and Feeble-minded to sterilize a “defective” woman named Carrie Buck. The decision has never been overturned.

Lombardo has no plans to abandon his fight to publicize the terrible history of eugenics. With genetics playing an increasingly important role in science, Lombardo and other bioethicists fear the lessons of the eugenics debacle matter more than ever.

University of Maryland historian Steven Selden worries about how we will handle the ethical questions of possible genetic “improvements” to humanity. “We’re going to revisit all the ethical conundrums that were inherent in the eugenics movement as we move forward.”

Related posts here, here and here.

(USA Today photo)

Efforts of well-meaning doctors, parents often had tragic results, authors find

In the San Francisco Chronicle, Heidi Benson reviews “Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry’s Quest to Manipulate Height.”

Authors Susan Cohen and Christine Cosgrove trace the history of height manipulation over the decades, interviewing men and women whose lives were changed by it. They find some dire consequences, including infertility, depression, and even death.

“This book is not an indictment of technology,” the authors write, “but an illustration of how quickly medicine can move from curing disease, to treating disability, to leveling disadvantage, to satisfying desires for perfection.”

“… we end the book with a plea for an acceptance of diversity and an end of conformity,” Cohen said. “Adolescents will always be miserable, but they may be less miserable if people value and understand diversity.”

Cosgrove (at right) was one of thousands of girls who were given synthetic estrogen in the 1950s to limit their growth. She spent five years taking daily doses of diethylstilbestrol (DES), and has been left with lingering questions about the long-term effects of a drug now linked to elevated risks of fertility problems and cancer.

See also: Tall West Michigan women say there’s no need to be afraid of heights — Grand Rapids Press

(San Francisco Chronicle photo)

In the New York Times, Polly Morrice reviews Karl Taro Greenfeld‘s memoir about growing up in the shadow of a brother with autism.

She says “Boy Alone” allows Greenfeld to “exhume some festering emotions” about the intense media attention lavished on his younger brother Noah, who was the subject of several popular books written by their father in the 1970′s.

Karl vividly shows how his parents’ focus on Noah, and Noah’s profound autism, left him the “boy alone” of the book’s title …

The book’s emphasis … stays squarely on what might be called the brotherhood problem: can you love, and someday care for, a sibling who will never return your affection? The answer may not reassure the parents of the Noahs of the world, who form an obvious audience for “Boy Alone.” But it probably won’t surprise them, either.

(New York Times photo)

Writing in the Washington Post, Barry Werth reviews “Annie’s Ghosts” by Post associate editor Steve Luxenberg.

Luxenberg uses his background as a journalist to construct a “probing, wise and affecting new memoir” about a family secret, Werth writes. Why had Luxenberg’s mother said she was an only child when she actually had a sibling? Her sister Annie, who had disabilities, was sent to an institution.

[Annie Cohen] was born in 1919 with a deformed leg and with mental challenges that today would classify her as borderline mentally disabled. The first secret that Luxenberg uncovered — the one that would propel him to dig far beyond Annie’s unhappy life to the “ghosts” of the title — was that she’d been sent away not, as his mother told her social worker, when she was 2 and Beth 4, but after suffering a psychotic break when Annie was nearly 21 and Beth 23, unmarried and still living at home.

Not only had Beth not been an only child … but she also had lived up until adulthood under the same roof as Annie, along with the shame and stigma of having a damaged family member at a time when mental and physical deformities were poorly understood and worried over as darkly hereditary and reflective of everyone in the household.

See also:

Baltimore author Steve Luxenberg juggles his roles as a tenacious reporter and a loving son in his memoir of his mother — Baltimore Sun

A journalist uncovers his family’s ‘Ghosts’ — NPR, All Things Considered

Steve Luxenberg’s quest — Michigan Public Radio

Writing in the [UK] Guardian, Charlotte Moore interviews Anne Crosby, author of “Matthew,” a memoir about her son with Down syndrome. Crosby sent Matthew to an institution in the 1960′s under the advice of an eminent psychologist who urged her to protect her daughter, the “important” child, from her son, the “throwaway” child.

Moore says Crosby, now 79, has written a memoir “which describes with exceptional clarity and honesty the warring emotions unleashed by her son’s short life.” The book portrays Matthew, who died at 25 of a heart condition, as “funny, original, gentle, kind and with a power of empathy so acute that he was tormented by concern for the feelings of people, animals and even objects.”

Among the challenges Crosby faced at the time:

• Her husband, Theo, remained “implacable and unrelenting in his wish to send him away;”
• Theo’s mother believed Matthew was a punishment from God;
• Friends abandoned her because they thought Matthew was “harmful to their children’s psyches;” and
• Anne’s mother revealed that she had given up a child with Down syndrome herself and “smilingly recommended that Theo and I set about making similar arrangements for [Matthew].”

Charlotte Moore, who has two sons with autism, is the author of “George and Sam: Two boys, one family and autism.”

Earlier posts here and here.

(Family photo from The Guardian)

Interviewed on NPR, journalist Karl Taro Greenfeld says his childhood was overwhelmed by his brother Noah, who is severely autistic. Noah became a celebrity in the 1970s when their father, Josh Greenfeld, wrote a series of best-sellers about him. Karl Taro Greenfeld is the author of the just-released memoir, “Boy Alone.” (Earlier post here.)

Excerpts from Greenfeld’s interview with NPR’s Michele Norris:

… “when you have a developmentally disabled person in your family … the gravity of the family is tilted disproportionately toward that person. In my family, Noah became the center of everything.”

… “Almost as soon as I have a memory of myself, the memory is of worrying about Noah,” Greenfeld says. “I was very much the less important sibling. I don’t look back on that with any kind of self-pity; it just was the reality of the situation.”

… More than once, Greenfeld uses the word “idiot” to describe his brother.

(more…)