Historically, both forms of spelling have been used interchangeably to refer to this condition. The title originates from English physician John Langdon Down who was the first to develop a complete characterization of the genetic condition. Dr. Down did not have the genetic condition. The National Down Syndrome Society (NDSS) uses the spelling Down syndrome rather than Down’s syndrome because the apostrophe in “Down’s” implies ownership or possession, and Dr. Down does not own or possess the condition. 

Down vs. Down's syndrome

NDSS encourages using person-first language when referring to people with Down syndrome and avoiding using the term “Down” or “Down’s” as an adjective or title (i.e. it is discouraged to say “Down’s child” or “s/he has Down’s”. 

Person-first language

It is important to be informed on the appropriate language when referring to or speaking to people with Down syndrome in order to be respectful and inclusive. The Down syndrome community and NDSS express the preferences in Down syndrome language and communication in the following ways: 

- Down vs. Down's syndrome
- person-first language

University of Virginia, Charlottesville

Individuals with disabilities and their families and caretakers often identify with the umbrella term of the “Down syndrome community.” To understand this disability, it is important to understand the cultural and social characteristics of the community. We can understand the community by considering how the Down syndrome community prefers to be communicated with, the employment and education trends, disparities in outcomes, how individuals with Down syndrome see themselves and each other, and the experiences of caretakers. 

Culture of Down syndrome

“About Down Syndrome.” National Down Syndrome Society (NDSS), https://www.ndss.org/about. 

National Down Syndrome Society (NDSS): About Down Syndrome

Preferred Language of Down Syndrome

As opposed to some health conditions or disabilities, Down syndrome occurrence is not associated with race, ethnicity, socioeconomic status or geographic location. However, the health outcomes and lived experiences of individuals with Down syndrome and their caretakers may differ and have disparities among marginalized racial, ethnic, and socioeconomic groups. 

Disparities

Employment is an integral role of a citizen, and individuals with Down syndrome are often discriminated against in the professional world because of perceptions of their disability characteristics. Individuals with Down syndrome are fully capable of holding employment, and under the ADA, opportunities have expanded. 

Employment and Down syndrome

The developmental delay components of Down syndrome contribute to varying degrees of intellectual impairment. Individuals with Down syndrome have delays in speech and motor skills which impacts the pace at which they can learn. Individuals with Down syndrome benefit most from specialized education programs. 

Education and Down syndrome

Sociocultural, geographical, and traditional factors constitute different general practices of caring for and accepting individuals with Down syndrome in different parts of the world and in different cultures within a region. Some identifications of culture include religion, ethnicity, socioeconomic background, and geographical region. These identities cultivate ways of thinking that influence how individuals with Down syndrome receive care and are socially accepted. 

Cultural differences in acceptance and care of Down syndrome

Individuals with Down syndrome are subject to broader U.S. legislation protecting rights for individuals with disabilities, such as the Individuals with Disabilities Act (IDEA), the Americans with Disabilities Act (ADA), the Rehabilitation Act of 1973, the Fourteenth Amendment, and more. There are more specific policies and forms of legislation particularly protecting individuals with Down syndrome and chromosomal defects. 

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