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Down Syndrome

Vincent O’Neil

Introduction to Special Education 203

Disability Research Paper

Tuesday, November 3, 2020

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“Down syndrome, or trisomy 21, is a genetic disorder caused by the presence of an extra

copy of chromosome 21 or by a portion of chromosome 21 translocated (attached) to another

chromosome in one of the affected child's parents. It is not inherited in most cases but is caused

by a random genetic abnormality. The disorder is named for John Langdon Haydon Down

(1828–1896), a British doctor who pioneered the care and education of children with the

syndrome that now bears his name, as well as publishing the first scientific description of it in

1866. The cause of Down syndrome was finally identified in 1959 by Jérôme Lejeune (1926–

1994), a French pediatrician and geneticist” (Frey 562). As with any other disability, there is

prejudices and slander. “Down syndrome was sometimes referred to in the past as Mongolian

idiocy or mongolism because the facial features of some children with the syndrome were

thought to resemble those of people from Mongolia. In 1965 the World Health Organization

(WHO) stated that mongolism should no longer be used as a synonym for Down syndrome,

following a request from the organization's Mongolian delegate. Mongolism is presently

considered a disrespectful term and should not be used in discussions of the condition, although

the word still occasionally appears in print” (Frey 562). Down syndrome can affect anyone and

the focus on a cure and for better care should remain a priority.

As stated in the previous paragraph, the cause for Down syndrome was in 1959, but was

known about and cared for during the 1800’s. How people with Down syndrome were cared for

in the past is much different than today. “During the first half of the twentieth century in the

United States, the majority of children with Down syndrome were placed in institutions –

frequently soon after birth. This resulted in great human sacrifice for those individuals and for

their families, who were convinced, often by members of the medical community, that the child

was less than human and that their needs would be so great, their families would not be able to
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raise them. These children were “warehoused” in large state institutions – often in deplorable

conditions – locked away so that the rest of society could not see the horror of their lives”

(National Association for Down Syndrome | History of NADS). This reoccurring idea that people

with Down Syndrome are not human and are not to be treated as such is slowly being dismantled

and a new standard is being set. “The advocacy focus is now evolving to an emphasis on quality

and accountability, self-determination, opportunities for individuals with disabilities and their

families to have real choices and control over services and supports, and the achievement of a

level of self-sufficiency and life in the community unheard of 30 years ago” (Cohen et al. 120).

Although Down syndrome is caused through random cell creations, “There are three

known risk factors for having a child with Down syndrome: Mother older than 35 years of age

and/or father older than 42, Having a previous child with Down syndrome. A woman who has

borne one child with the syndrome has about 1% chance of having a second child with the

condition, Either parent being a carrier of the genetic translocation for Down syndrome” (Frey

562-563). Besides these three risk factors, “There are no lifestyle or environmental factors

known to cause Down syndrome” (Frey 563).

Down syndrome is caused by a random abnormality, which entails that anyone can be

born with this disability; no human is excluded. “Down syndrome occurs with equal frequency in

all races and ethnic groups worldwide. Boys are slightly more likely to be affected than girls; the

sex ratio is 1.2:1. As of 2011, there were about 400,000 people with Down syndrome living in

the United States” (Frey 562). The effects of Down syndrome are both physical and

psychological. The physical effects of Down syndrome are, “an additional skin fold at the inner

corner of the upper eyelid (epicanthic fold), a short neck, white spots on the iris of the eye known

as Brushfield spots, a round face, ears that are smaller than normal, a flattened area at the back of
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the head, missing teeth or delayed development of teeth, protruding tongue and a tendency to

breathe through the mouth, an extra-wide space between the big toe and second toe” (Frey 564).

Along with these physical effects comes a difference in height for those who have Down

syndrome, “The average height for adult men with Down syndrome is 5 ft. 1 in. (1.5 m); for

women, 4 ft. 9 in. (1.4 m)” (Frey 562). The psychological effect of Down syndrome results in,

“The average IQ scores of children with the syndrome are between 35 and 70” (Frey 562).

The life expectancy of people with Down syndrome has greatly increased in recent

centuries. “At the turn of the twentieth century, a person with Down syndrome (DS) was

expected to live only about 9 years. Today, life expectancy is about 56 years” (Cohen et al. 221).

The life expectancy of a person with Down syndrome is affected by the fact that, “Between 40%

and 60% of infants with Down syndrome are born with severe heart defects; others have

blockages of the esophagus and small intestine. These defects may require surgery shortly after

birth. These children are also at increased risk of childhood leukemia” (Frey 562). With

advancements in all healthcare procedures, persons with Down syndrome are able to live fuller

and longer lives.

With there being no cure for Down syndrome, treatments and means of prevention are

subject to the individual. Treatment for people with Down syndrome usually revolves around

physical, mental and developmental care. A “characteristic feature of Down syndrome is

hypotonia, which is the medical term for poor muscle tone. Children with Down syndrome often

need extensive physical therapy in order to learn to walk and move normally, and are at

increased risk of obesity as they grow older” (Frey 562). Developmental issues vary from person

to person, loosely based on their individual IQ levels and the support that they have. “In general,

children with Down syndrome develop on a slower timetable than other children” (Frey 565).
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For educators, acknowledging and understanding that people with Down syndrome develop

slower than others will help with assessments. “In general, children with Down syndrome are at

greater risk of developing a mental disorder than other children” (Frey 565). Mental health

disorders that are common in people with Down syndrome are, “Dementia, Attention Deficit

Hyperactivity Disorder, Autism Spectrum Disorders, Obsessive Compulsive Disorder, and

Depression” (Frey 566).

The treatment of Down syndrome has been consistently improving and progressing, but

there is still more work to do. “Therefore, from a wider perspective, it is important that equality

of access to health care systems is ensured for people with intellectual disability.69–72 This

poses challenges for genetic counselling, public education programmes, and for health care

delivery systems in general. In the absence of appropriate understanding and assistance for

people with DS, and additional help for carers, increasing life expectancy could result in greater

emotional and financial burdens. These age-associated problems need to be urgently addressed if

the interests of this vulnerable and growing section of society are to be adequately and

appropriately met” (Bittles et al. 224).

I worked closely with a man who has Down syndrome and that relationship has brought

out a lot of aspirations in me. I worked as a kitchen manager and he was hired as a dishwasher

and bus boy. His name is Nate. Nate lived in an apartment by himself and worked two jobs. He

worked at a job that only hires people with disabilities and have handicaps. Through that job and

working with a case manager, he found our workplace and we set him up with employment.

Nate inspired me, his work ethic and attitude made me want to be better and do better. I had

been involved with kids who had disabilities and/or handicaps while I was in school but had not

been involved with any people outside of school who had disabilities and/or handicaps. I
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initially went to college to be an English teacher but quit going to college after two years.

Through this experience with Nate, and other life events, I found my interest in helping, teaching

and working with people who have disabilities. I am ecstatic to be pursuing this career and

having had relationships with someone who has Down syndrome. Without meeting Nate I do

not know where I would be now and I will forever hold my professional and personal

relationship with Nate dear to my heart.

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Works Cited

Bittles, Alan H., et al. “The Four Ages of Down Syndrome.” European Journal of Public Health, vol.

17, no. 2, Oxford Academic, Apr. 2007, pp. 221–25. academic.oup.com,

doi:10.1093/eurpub/ckl103.

Cohen, William I., et al. Down Syndrome : Visions for the 21st Century. 1st ed., Hoboken: Wiley,

2003, http://web.a.ebscohost.com.ezproxy.library.csn.edu/ehost/ebookviewer/ebook?

sid=7afc3e89-1d99-45c8-ad48-0c1829f99793%40sessionmgr4006&vid=0&format=EB.

Frey, Rebecca J., PhD. "Down Syndrome." The Gale Encyclopedia of Mental Health, edited by

Brigham Narins, 4th ed., vol. 2, Gale, 2019, pp. 562-568. Gale eBooks,

https://link.gale.com/apps/doc/CX2491200171/GVRL?u=las55353&sid=GVRL&xid=f315b54a.

National Association for Down Syndrome | History of NADS. https://www.nads.org/about-us/history-

of-nads/.
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