People with Down syndrome are lifelong learners (just like everyone else)

Down Syndrome of Louisville’s Lifelong Learning Center

New research finds that people with Down syndrome continue to learn throughout their lives and can add functional skills in adult years. Just like the rest of us, they are lifelong learners. 

Dr. Brian Skotko, a Harvard professor, medical geneticist, and director of Massachusetts General Hospital’s Down Syndrome Program, and colleagues of his in the Netherlands have published research on the functional skills of individuals with Down syndrome. Their findings should impact how new and expectant parents are counseled when receiving a test result for Down syndrome.

Based on thousands of parent surveys, the research reports on when developmental milestones are attained. Most associate intellectual and developmental delay with Down syndrome. A common concern for parents is wondering how those delays will affect their child. The research reports encouraging news.

While parents are still egregiously counseled that their child may not walk, talk, or ever live independently, the research counters this bad advice with the following milestone attainments by age for most people with Down syndrome in the United States:

• Walking by 25 months
• Speaking reasonably well, by age 12
• Maintain personal hygiene, by age 13
• Work independently, by age 20
• 34% live independently by age 31

Of course, because each individual is unique, attainment of these milestones will vary. For instance, my daughter walked by 19 months, spoke reasonably well by age 8, but still needs help making sure all the shampoo is washed out of her hair at age 14. These findings, though, should provide hope for new parents and revise the advice that many healthcare professionals deliver when reporting a test result.

Our brains are wired to give more emphasis to negative news than positive. If six of your friends tell you about a great meal they had, but one tells you about an awful dining out experience, you may remember some of the good restaurants, but you’re more likely to remember avoiding the bad one. This is why campaigns run negative political ads–their message sticks in people’s minds.

Therefore, it can be expected that Dr. Skotko and his colleagues’ research will receive a fair amount of criticism based on case studies of one. Critics will want to push back on the findings by citing to one kid they went to school with who was non-verbal; or a distant family member who never left her parents’ home even into adult years; or, even parents whose children with Down syndrome may not attain any of these milestones other than walking.

Certainly, these cases occur, but that should not detract from or overshadow the findings of the new research: that those cases are in the minority and, instead, most people with Down syndrome will be able to walk in their toddler years; speak well by their adolescent years (when likely some of what they say parents wish they didn’t get to hear); and be able to work independently as adults.

Another key finding of the research is that individuals with Down syndrome are able to add new functional skills even into their adult years. This is a premise that my local parent support organization believed in based on its experience of tutoring adults with Down syndrome: that they are lifelong learners. It is why our organization’s building is called the “Lifelong Learning Center.”

Dr. Skotko is quoted at the end of a press report on his study’s findings noting another implication for his research. Half of all states in the United States recognize what is odiously termed “wrongful birth” lawsuits: parents sue their physician for not offering prenatal testing (or misreporting the results) to say that they would have aborted had they known prenatally and now the physician (or his or her malpractice insurer) must cover the lifetime of costs associated with raising a child with Down syndrome. The critiques of these stupid, illogical claims are legion and well-deserved, but Dr. Skotko, et al.’s research should require revision to the usually out-dated economic models based on lives with Down syndrome who were not working or living independently.

The new research on the functional skills for individuals with Down syndrome is newsworthy because most people do not have the lived experience of parents of children with Down syndrome and do not appreciate how these fellow brothers and sisters in humanity are lifelong learners. Physicians, genetic counselors, medical geneticists, obstetricians, and testing laboratories–not to mention educators–should familiarize themselves with the study’s findings. After doing so, they should revise their advice and marketing messages to appropriately reflect that while there are developmental delays, most of the milestones are attained by most individuals with Down syndrome and they continue to learn and can add skills throughout their lives.