Autism Vox

Responses to NYTimes article on Down syndrome

by Kristina Chew, PhD on May 12th, 2007

The May 11th New York Times published six letters in response to its May 9th article on persons with Down syndrome and their parents, and the questions faced by parents today due to prenatal genetic testing. If you are like me and know, as one commenter wrote, that our autistic—-our disabled—children are “perfect for us,” some of the letters may be rather unsettling. I quote them in full, with brief commentary by me [in brackets after each letter]:

(The May 13th New York Times also has an essay by reporter Elizabeth Fitzsimmons, My First Lesson in Mothering, on adopting a daughter from China—-and then learning, after finding a scar on her back, that her daughter had spina bifida and that a tumor had been poorly removed.]

• To the Editor:

  Re “Prenatal Test Puts Down Syndrome in Hard Focus” (“The DNA Age” series, front page, May 9):

  It may be informative for mothers carrying Down syndrome fetuses to hear an 11-year-old patient say that “even though I have Down syndrome, it is O.K.,” but can children understand the challenges they face as they grow older and are significantly more likely to suffer from an early onset of heart disease, diabetes and Alzheimer’s disease?

  Fighting Down syndrome with prenatal screening does not “border on eugenics.” It is a “search and destroy mission” on the disease, not on a category of citizens.

  As a graduate student studying genetic disease, I hope that parents will harness the potential of widespread genetic testing (of both adults hoping to conceive and of fetuses) to eradicate a spectrum of painful and debilitating diseases.

  William Motley
  Oxford, England, May 10, 2007
  The writer is a doctoral candidate in genetics in a partnership program between the University of Oxford and the National Institutes of Health.

  [It may be informative for this letter writer to spend some time, or more time if he has already done so, with disabled children and adults and their families.]

• To the Editor:

  Your article about Down syndrome took me back 38 years to my daughter’s birth. Her condition came as a complete shock. I knew nothing positive about the syndrome, only the negative.

  We were offered an opportunity to put her in a private institution “for the sake” of our other child. Thank goodness we didn’t!

  This child has turned out to be a highlight of my life. She is not high functioning and will never live independently, but she walks, runs, talks, sings, laughs and feels, and her favorite activity is playing games on her computer and surfing the Internet.

  Until you live with your child, of course you don’t think you can do it. You could say to prospective parents: “Don’t let the prospect of mental retardation totally throw you. There may be difficulties, but there are also tremendous joys in raising a child with Down syndrome, and most parents are able to do it. Your child will be more like normal children than not. And you will be amazed at how deeply you will fall in love.”

  Susan Colodney
  North Bridgewater, N.J., May 9, 2007

  [Just yesterday my in-laws’ live-in nurse (she is from Ghana) laughed when I pointed out that Charlie is almost as tall as me: “He is your boyfriend!” she said; indeed.]

• To the Editor:

  I am the mother of a 20-year-old with autism. Her differences, however, do not require me to be so selfish as to want other parents to have children with a disability so that there is no impact on my daughter’s future.

  I find your article to be disturbing in that here is a group that is concerned that there will be a “shortage” in the future with people afflicted with Down syndrome. I most certainly want there to be a shortage of autism in this world. What am I missing here?

  Sue Palmer
  Paradise Valley, Ariz., May 9, 2007

  [I am all right with the current “non-shortage” of autism in the world—the prevalence rate for children being 1 in 150; it is likely the same for adults.]

• To the Editor:

  I am shocked to hear of people who because of reasons of acceptance or tolerance of their own children with Down syndrome would advocate that others go through the tremendous social, medical and monetary burdens that are inevitable parts of this disorder.

  As a pediatric cardiologist who cares for many of these very sweet children who have heart disease (approximately 50 percent incidence in children with Down syndrome), I am aware of the tremendous time and resources that parents have to devote to their child’s care and the effect that it has on family dynamics.

  While cardiac surgery has made many strides to correct most of these problems, many of these children are still left with a lifetime of significant illness. This is on top of the myriad other problems that are realized to some degree in all Down syndrome children.

  Medicine is often said to be “in the business of putting itself out of business” by promoting preventive care, including prenatal testing. For those who would not choose to terminate under any circumstance, there is no need to obtain testing, but for those who would like to know and possibly terminate (90 percent, according to the article), these tests are invaluable, should be made available to all and may help individuals possibly avoid a very significant life-changing illness.

  Gil Herzberg, M.D.
  Larchmont, N.Y., May 10, 2007

  [A “life-changing illness” for whom?]

• To the Editor:

  What happens to these children once parents are no longer available to care for them?

  What percentage of Down syndrome adults can live independently and earn a decent living?

  While raising a child with this syndrome can be a positive experience, it is crucial that future parents approach the decision of giving birth to such a baby with a realistic view of the entire life cycle: both that of inevitably aging parents and that of an aging adult with Down syndrome.

  Marion Hunt
  Chapel Hill, N.C., May 9, 2007

  [What happens to any person—an elderly person who has lived a full life of college, marriage, children, job, grandchildren—when they are unable to take care of her or himself? We will all be disabled some day; parents of disabled children like myself need already to plan for their children’s needs as adults—-as we must plan for our own.]

• To the Editor:

  The parents you interviewed echo what attitude research has shown for 50 years: that people with intellectual disabilities continue to be challenged by the public’s misperceptions and limited expectations.

  A national survey recently conducted by our center conclusively demonstrated that the American public believes that most people with intellectual disabilities are moderately impaired and dependent on others for their daily care.

  In reality, approximately 85 percent of people with intellectual disabilities, including Down syndrome, are mildly impaired and capable of a wide range of self-help and independent living skills.

  Unfortunately, the prognoses that doctors give to parents are often informed by misperceptions, leading parents to believe that a child with a disability can never achieve the quality of life demonstrated by the children in your article.

  To help parents and policy makers make informed decisions about these issues, an appreciation for the wide range of competence among people with intellectual disabilities is critical.

  Gary N. Siperstein
  Boston, May 10, 2007
  The writer is a professor and director of the Center for Social Development and Education at the University of Massachusetts, Boston.

  [I “presume competence” in my autistic, minimally verbal, probably MR son, Charlie. (His intelligence is not the kind that would show up on any test, due to his language disability.) We teach him to read; we think ahead to the kinds of work—perhaps involving some kind of physical effort—that he will someday do.]

It will be Charlie’s tenth birthday on Tuesday. I can only speak for myself, but I would be less of what I am today, had I not spent these years with my boy at my side.

Share This

Related Stories

Genetic Tests & Abortion; Disability & Defect
Gifts Your Autistic Child Might Actually Want to Play With
Prenatal Genetic Testing: Preventing Disability? Accepting Human Diversity?
National Screening Halves Number of Children Born with Down Syndrome
Some corrections in order?

POSTED IN: Adulthood, Disability Rights, Genetics, Parenting, Science