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What she wishes she had known about Down syndrome …

September 29th, 2007

I highly recommend this moving and well-researched article by Campbell K. Brasington, from the website of the Journal of Genetic Counseling. It’s called, “What I Wish I Knew Then … Reflections from Personal Experiences in Counseling about Down Syndrome.”

Ms. Brasington recounts her own professional journey, and tells how regular interactions with people with Down syndrome and their families caused her to change her attitudes toward the condition. Like many health professionals, she says, she had been taught to think of Down syndrome as a “devastating and mostly tragic event.” But after many conversations with families, Brasington says she came to understand that “children with Down syndrome are more like other children than different, ” and that “families can and do thrive with a child with Down syndrome.”

She debunks old beliefs that adults with Down syndrome are not capable of working, living independently, having relationships or experiencing quality of life. “In my experience, I have found none of these old beliefs to be universally true,” she says.

Here’s an excerpt:

From getting to know many people with Down syndrome, I’ve learned they are not so different at all, they want what we all want: love, acceptance, respect, dignity. Adults with Down syndrome are achieving more than ever before. With a lifespan now reaching into the 60′s, people with Down syndrome are dreaming big dreams. More and more are finishing high school and moving on to [post]secondary education. They are moving out of the sheltered workshops and working real jobs for real pay. People with Down syndrome take real pride in their work and in their paycheck!

… They have friends, boyfriends and girlfriends, and even get married. They enjoy music, movies, reading, sports, hobbies and church. They enjoy volunteering and having the opportunity to give back to others. They want and enjoy the same things as you and I. What makes their lives difficult are the attitudes of others, not Down syndrome! (Emphasis in the original.)

Ms. Brasington, who practices in North Carolina, offers some suggestions to genetic counselors on how to share “unexpected” news when giving a diagnosis to parents of a newborn. She says the term “unexpected” is more appropriate than “bad,” as it avoids placing a value judgment on the information given. Among her suggestions:

  • Congratulate the family on the birth of their new baby;
  • Help the family put the diagnosis in the proper perspective, and understand that this child will be more like other children than different;
  • Reassure families that they have the skills to raise this child;
  • Remind them to have expectations for this child; and
  • Emphasize the importance of a balanced family life, in which each family member is important and has something to contribute.

She goes on to note, quite perceptively, that “many families describe having a child with Down syndrome as a life changing event, but it is not a life they would change!” (Emphasis in the original.)

They tell me later they feel guilty that they were so sad at the birth of their child; that their child is a joy to them and they would not change him or her now. They have come to learn what is really important in life, lessons they probably would not have learned if not for their child with Down syndrome: the strength of love, the importance of family, an appreciation for what is inside a person, that IQ or the acquisition of material things are not the only measures of success or happiness.

The full article is available online to subscribers, and can be purchased by nonsubscribers at a cost of $32.

3 Responses to “What she wishes she had known about Down syndrome …”

  1. Ralph Savarese Says:

    We can extrapolate from Ms. Brasington’s work on Down Syndrome a similar lesson about autism. The adoptive father of a non-speaking boy with autism who was presumed to be retarded, I can’t tell you how bad the information about autism is.

    A recent study of claims of mental retardation in autism from the late-1930s till 2003 showed that three-quarters of them had NO empirical data. New work on theory-of-mind by Morton Gernsbacher has demonstrated that scientists have been using the wrong tests to assess this skill. Add to this horror tons of anecdotal [stuff] from professionals about how miserable austic lives must be and it’s no wonder that parents, when facing a diagnosis, panic.

    We neurotypicals have <strong>projected</strong> onto different physiologies and different sensibilities our neurotypical ignorance and fear. <strong>living</strong> with autistic people reveals a different story. Parents are dismissed because their accounts, as the doctor above makes clear, are unscientific, but they know <strong>from experience</strong> that what the professionals are saying is wrong, or at least insufficient.

    I’ve come to listen to those doctors like Laurent Mottron at the University of Montreal who have invited autistic people to join their research teams or those who have autistic family members. We need <strong>more</strong> studies from such people, but studies <strong>are</strong> emerging.

    The reality of cognitive disability is so very different from what the experts say, and history has shown that the scientific community has been repeatedly wrong and, at times, even vicious about those with differences. I think of my son who is now a straight “A” student using a computer to speak. He’s the most thoughtful, empathetic and politically conscious young person I know. What would have happened had we listened to the dire prognosticators?

  2. William L. Freeman, MD, MPH Says:

    The full article by Ms. Brasington was quite moving. Her own humanity, and even more what she learned from people with Down Syndrome and from their families, touched me. I hope her article will touch many other health professionals in a similar way. Thanks very much for alerting us to the article! As a physician myself, I believe that many more articles like Ms. Brasington’s — and your “Stand Tall”– are needed.

    But while I believe that such articles are necessary to change health professional behavior, I worry they will not be sufficient. As a practicing physician [now retired], educator, and community-based participatory researcher, I know that many health professionals view personal stories as just “anecdotal,” and not real scientific evidence. Many health professionals want professional standards and professional behavior to be “evidence-based,” that is, based on good scientific research.

    Thus, results of good research about the quality of life and achievements of a cross-section of people with Down Syndrome are needed as well. The cross-section should truly represent the entire range and likelihood of people with Down Syndrome, that is, not be composed just of the more public exemplary people — and should go to at least to young adulthood.

    Ms. Brasington’s article was published in the “Journal of Genetic Counseling,” the official journal of the National Society of Genetic Counselors. Using the journal’s website, I found only 21 articles in the journal’s index for articles with “Down Syndrome” in its 16 years of publication. Only 5 articles focused primarily on Down Syndrome. No article was about the long-term lived experiences of people with Down Syndrome. :-(

    While many genetic counselors are as knowledgeable about Down Syndrome as Ms. Brasington, many others are not. No wonder. I hope that self-advocates with Down Syndrome, and parents and sibs and other advocates, demand that such research be done — and that the research be done in partnership with them.


  3. Mary Says:

    This is an important article, both for what the author says as well as for who the author is.

    Mary Muller

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