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For people with Down syndrome, family members, caregivers and professionals.

Two Syndromes

February 2025 | Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

In the 1990s, I wrote a piece I called “Two Syndromes.” The title refers to how different the lives of people with Down syndrome are now compared to the past. With nearly 30 years passing since writing the piece, it seemed like a good time to revisit that concept and update the article. 

There are four areas that explain much of the difference – that make Down syndrome today look almost like a different, a second, syndrome than the one John Langdon Down described in the 1860s. However, many of these changes have actually been changes in society that have helped people with Down syndrome open doors that were holding them back.

Four key areas of change are: 

  • Life expectancy

  • Expectations

  • Opportunities

  • Goals

 

Life expectancy

The life expectancy of people with Down syndrome has increased dramatically since my Great Uncle Leo was born with Down syndrome in 1907. His life expectancy was only 9 years. For the white population of people with Down syndrome in the United States, it increased to about 29 years by 1984 and is now about 60 years.

A great deal of the increased life expectancy has occurred since the 1970’s with the ability to surgically correct congenital heart disease and, subsequently, the willingness of the medical community to provide this care for children with Down syndrome just as it did other children. Other advances in health care, promoting living in the community rather than in large institutions, and other opportunities have also helped increase life expectancy.

More information on life expectancy is available in this article on Life Expectancy, Aging, and the Down Syndrome Population
 

Expectations

Particularly in the early years after the Adult Down Syndrome Center opened in 1992, families of many of the individuals seen at our clinic shared what they had been told at the time of the birth of their loved one with Down syndrome. The news was very discouraging. “Your son will never walk, never talk, and never do much of anything.” Many were also told that, if they kept the child with Down syndrome in their home, the child would “ruin the rest of the family.” 

Thankfully, many of those families ignored the information. They took their child with Down syndrome home and disregarded the professional advice they received.

The three recurrent themes those families shared were: 

  1. "We took him home and loved him."

  2. "We treated him like our other children."

  3. "We expected that he would learn. We didn't know how much, but we approached each day as a new learning opportunity."

These courageous families (although many wouldn’t describe themselves that way) paved the way for the continued progress we see today. They helped break the first barrier – low expectations. Many families shared, “If you expect nothing, you usually get it.”  In addition, we heard and continue to hear that, “Not only did our children with Down syndrome not ruin the family, but they enriched our lives in unimagined ways.”

Opportunities

When those families brought their son or daughter home, the opportunities for the individual were about as bleak as the above advice. So, what did these families do?

Many of them did a wonderful job at home all on their own. Others took additional steps:

  • If they wanted better health care for their loved one with Down syndrome, they encouraged and supported physicians and hospitals to provide better care. They shared information, established parent support networks, and participated in the development of clinics and other settings to improve health care. 

    • That is how our clinic was developed - through the efforts of the staff and families of the National Association for Down Syndrome, which serves the Chicago metropolitan area and is the oldest Down syndrome organization in the United States.

  • If they wanted an educational program, they developed one. 

  • If they wanted a recreation program, they developed one.

  • If they wanted a work program, they developed one. 

The list goes on.

Is there room to develop more and/or improved programs? Should we continue to assess and modify what is being done as we learn more? Should we work to better include people with Down syndrome in the planning and implementation? Should we continue to improve inclusion of people with Down syndrome in community programs, work settings, schools, etc.?

Yes, to all the above.

Have we reached the pinnacle? Are there no more challenges? Of course not! But those families started the revolution that continues today and into the future. 

 

Goals

Years ago, we saw a woman with Down syndrome in her 50s who was brought to us by her brother. “I don’t know what to do,” was the phrase he kept saying. His sister had lived with their mother in a distant state for years. Shortly before we met the woman with Down syndrome and her brother, their mother had passed away in her late 80s. No plans had ever been made for the woman’s adulthood much less for her life after her mother’s death. When the woman with Down syndrome was born, the doctor had said she would never live into her 20s and certainly not outlive her parents so they never expected her to live as long as she did.   

However, now with longer life expectancy, higher expectations, and increasing opportunities, people with Down syndrome are planning and preparing for futures full of possibilities – greater independence, college and other post-high school programs, new living situations, jobs, etc.

Like all people, individuals with Down syndrome have varied levels of skills, interests, and desires. Goals being developed now also can consider a person’s unique needs and preferences.

 

One, two, or three syndromes?

With these changes over time, it does look almost like we have “Two Syndromes.” The changes have been immense, but we need to keep evolving, keep improving. People with Down syndrome share that there are times they still must advocate to be treated with dignity and respect in many areas of society, including in healthcare. That is unacceptable. We must continue to advocate with people with Down syndrome for:

  • a society in which dignity and respect are the norm and not something that have to be advocated for,

  • continued expansion of expectations and development of opportunities,

  • supportive communities that enable people with Down syndrome to achieve their goals, and

  • more research on health that will help people with Down syndrome live even healthier and longer lives.

What will the lives of people with Down syndrome look like 30 years from now? Hopefully, as these further advances occur, this article may be entitled, "Three Syndromes." 

Find More Resources

We offer a variety of resources for people with Down syndrome, their families and caregivers and the professionals who care for and work with them. Search our collection of articles, webinars, videos, and other educational materials.

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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