Family, Relationships & Life with Down Syndrome [Data & Statistics]

This article provides an insightful look into the lives of individuals with Down Syndrome, covering self-perception, quality of life, familial relationships, education, employment, and romantic relationships.

For instance:

1. Only 1-2% of them marry or have children,
2. 80% successfully complete ten years of primary education and
3. Impressively, 99% express satisfaction with their lives. 

This exploration aims to debunk misconceptions, reduce stigma, and highlight their immense potential and aspirations.

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Self-Appreciation and Social Relations

In one study, participants with Down syndrome were asked to rate their level of agreement with various statements on a Likert scale, with '1' for 'yes,' '2' for 'most of the time,' '3' for 'once in a while,' and '4' for 'no.' Researchers then calculated the percentage of participants who chose either 'yes' or 'most of the time' for each statement.

1. The results depict an overwhelmingly positive self-image among individuals with Down syndrome. Almost all participants expressed satisfaction with their lives (99%), who they are (97%), and their appearance (96%). Notably, only a tiny percentage (4%) expressed sadness about their life, highlighting the generally positive outlook of this group.
2. Countering common misconceptions, most individuals with Down syndrome reported finding it relatively easy to make friends (86%) and believing they make a positive contribution to the lives of others (85%).
3. Participants highly valued their familial relationships. Nearly all expressed love for their family (99%), and a large majority reported liking their siblings (97%). Furthermore, 89% considered their siblings as good friends.
4. However, a small fraction (15%) of individuals felt their parents paid more attention to their siblings than them. This suggests that while overall familial relations are strong, some families may have a minor perception of unequal attention distribution. [1]

Aspirations and Quality of Life

Overall, studies find that adults with Down syndrome desire increased independence, relationships, community participation, and exercising their human rights. [2]

Parental Love, Sibling Impact, and Support

Individuals with Down syndrome want the same things as other young people: a job, a partner, a home, the ability to live together, and, of course, a healthy sex life. 

After all, sexuality is inherent in human beings, and it becomes apparent very early. [4]

Homosexuality among individuals with Down syndrome is likely similar to that in the general population, and as the desire to have children is inherent in being human, individuals with Down syndrome also have this desire.

Related: 57 Lesbian, Gay, Bisexual Statistics: Dating, Health & Discrimination

However, The difficulty is not so much in their sexuality but in its acceptance by their environment. Unfortunately, DS sexuality is usually mishandled by over-protection, lack of opportunity, and restrictive environments. [5]

In one study examining how mothers of young adults with Down syndrome manage their children's sexuality, it was found that mothers employed various coping strategies. 

These strategies included neglecting their child's sexuality and exerting control over their children's sexual behaviors. 

The reasons for these coping strategies were multifaceted:

1. Mothers did not feel they could provide sufficient care to their children.
2. Mothers felt their knowledge about sexuality was inadequate to provide sexual education.
3. Mothers felt responsible for upholding cultural and social values and expressed fear and anxiety related to public displays of sexual behavior, such as masturbation.
4. Some mothers attempted to create a protective barrier due to their concern about the potential for sexual abuse of their children. (This is a legitimate concern, considering just some of the statistics related to online dating sexual violence.) 
5. Mothers expressed a desire to have a relationship similar to what other mothers have with their children who do not have a disability.
6. Mothers expressed disappointment due to their children's unmet sexual needs and blamed themselves for failing to fulfill their children's desires.

In conclusion, it's crucial to approach the sexuality of young adults with Down Syndrome with understanding and respect. Challenges exist, but with appropriate resources and societal acceptance, these individuals can explore their sexuality in safe and fulfilling ways. [6]

To learn more about the dating experiences of adults with disabilities, read Autism Online Dating: Pros, Cons, Sites, And Safety Advice.

Educational and Social Experiences

Public perception regarding integrating students with Down Syndrome (DS) into mainstream education is often fraught with concerns. 

• Many people (30.2%) believe that DS students should attend separate schools, while others (36.5%) worry that their presence might disrupt the flow of regular classes. 
• Additionally, 27.4% of people resist collaborating on a class project with a DS student, and 38.6% avoid social interactions with a DS student outside school. [7]

Despite these perceptions, the reality presents a more encouraging picture:

• Roughly 80% of DS students complete ten years of primary education, and about 2% even pursue secondary or post-secondary education. 
• Notably, those with a specific variant of DS, known as mosaic DS, are more likely to continue their education beyond primary school. [8]

Employment Perceptions & Reality

Transitioning from education to the workforce, the public's views about individuals with Down Syndrome (DS) present a complex image. 

While 18% of respondents expressed concerns that DS individuals could increase workplace accident risks, a much smaller proportion (2.5%) believe most adults with DS should not work.

This suggests a wide recognition of the abilities and rights of DS individuals to contribute in a work environment, albeit accompanied by certain safety reservations. [7]

In terms of actual employment:

• About 4% of adults with DS over 18 years have been employed full-time at some point. 
• For the majority, their income primarily comes from governmental public support. 
• Among those with reported earnings, the average income is approximately half of the overall mean. [8]

Learn about another mental disorder, BPD, and how it affects relationships: BPD Marriage, Divorce & Parenthood Statistics

Marriage, Dating, and Relationships

As mentioned, like any other individual, adults with Down syndrome also desire to form relationships, establish partnerships, and engage in sexual relationships. 

Individuals with Down syndrome are proficient in gauging the degree of romantic love similarly to those without Down syndrome, demonstrating their ability to amalgamate information concerning passion, intimacy, and commitment to assess the overall quality of their romantic relationships. [9]

Despite these capabilities, certain facets of these aspirations can present substantial challenges:

1. 1-2% of individuals with Down syndrome marry or bear children. [8]
2. Despite the typical longing for parenthood seen among adults with Down syndrome, much like their peers without the syndrome, couples within this community often consciously decide against having children due to understanding the potential demands and difficulties associated with child-rearing.
3. The legal intricacies surrounding matrimony for couples with Down syndrome can be complex. Some couples may find themselves sufficiently competent to live together yet not fulfill the legal prerequisites for marriage. In such cases, they commonly seek out alternative means to honor their relationship, such as ring exchanges or hosting celebratory gatherings.
4. The Instances of women with Down syndrome becoming mothers exist, whereas male infertility linked to this syndrome is a concern often highlighted. 

While integration into schools and workplaces, participation in the community, and an independent life are the scenarios that have enabled them to study, work, have friends, a partner, and, occasionally, their own home to add normality to their lives, in the end, it is typical for individuals with DS to live with their families indefinitely or transition to living with another family member or in an institution after their parents pass away. [5]

Concluding Thoughts

Our investigation shows that individuals with Down Syndrome, like anyone else, cherish their family relationships and aspire for independence, education, employment, and romantic relationships.

Families also show overwhelming affection towards their members with Down Syndrome and recognize their potential to enhance family dynamics.

Society's attitudes, however, often contrast sharply with these lived experiences and aspirations, with misconceptions and prejudices posing significant barriers.

Nevertheless, it's vital to continue advocating for inclusivity, rights, and understanding to support these individuals' desires to live fulfilling lives. By doing so, we can enrich their lives and our own, turning diversity into strength and mutual respect.

Sources Cited

[1] Skotko, B. G., Levine, S. C., & Goldstein, R. A. (2011). Self-perceptions from people with Down syndrome. American Journal of Medical Genetics, 155(10), 2360–2369. https://doi.org/10.1002/ajmg.a.34235

[2] Ijezie, O. A., Healy, J., Davies, P., Balaguer-Ballester, E., & Heaslip, V. (2023). Quality of life in adults with Down syndrome: A mixed methods systematic review. PLOS ONE, 18(5), e0280014. https://doi.org/10.1371/journal.pone.0280014 

[3] Bertrand, R. (2019). Parents’ perspective on having a child with Down Syndrome in France. American Journal of Medical Genetics, 179(5), 770–781. https://doi.org/10.1002/ajmg.a.61102 

[4] https://www.who.int/teams/sexual-and-reproductive-health-and-research/key-areas-of-work/sexual-health/defining-sexual-health 

[5] Garvía, B., & Ruf, P. (2014). Living as a couple with Down’s syndrome. International Medical Review on Down Syndrome. https://doi.org/10.1016/s2171-9748(14)70046-7 

[6] Gokgoz, C., Demirci, A., & Kukulu, K. (2021). Sexual behaviours and education in adolescents and young adults with Down syndrome: A grounded theory study of experiences and opinions of their mothers in Turkey. Research in Developmental Disabilities, 112, 103907. https://doi.org/10.1016/j.ridd.2021.103907 

[7] Pace, J., Shin, M., & Rasmussen, S. A. (2010). Understanding attitudes toward people with Down syndrome. American Journal of Medical Genetics, 152A(9), 2185–2192. https://doi.org/10.1002/ajmg.a.33595 

[8] Zhu, J., Obel, C., Hasle, H., Rasmussen, S. A., Li, J., & Olsen, J. (2013). Social conditions for people with Down syndrome: A register-based cohort study in Denmark. American Journal of Medical Genetics, 164(1), 36–41. https://doi.org/10.1002/ajmg.a.36272 

[9] Morales, G. E., Lopez, E., Castro, C., Charles, D., Mezquita, Y. N., & Mullet, E. (2014). Conceptualization of Romantic Love Among Adults with Down’s Syndrome. Sexuality and Disability. https://doi.org/10.1007/s11195-014-9368-2