Down Syndrome in Adolescence: Autonomy, Choices and Preparation for Adult Life

Imagine a 16-year-old teenager at a fast-food counter. The attendant asks what he wants. Before you can respond, the companion chooses the snack, informs you of the drink and pays. The young man remains there, present in a decision that could count on his participation.

In another situation, during a school meeting, adults discuss their future: what activities they will do, where they will study, what they will be able to learn. No one asks you what you like or what you would like to try.

These scenes invite reflection: how much space are we offering for teenagers with Down syndrome to participate in their own lives?

In the first article about Down syndrome and learning, we address the importance of opportunities and support in childhood. Now, the question arises: how to accompany growth, expand choices and prepare for the transition to adulthood?

Recognize adolescence in those who are growing up

Support needs may remain present while the body, interests and relationships transform. A teenager may need help with reading and want to choose clothes, talk privately with a friend, or go on an outing.

These dimensions do not need to advance at the same pace. Difficulty in a skill does not authorize treating the entire person as if they were much younger.

A study with adolescents with Down syndrome, presented by Buckley and collaborators, described advances in different areas and highlighted the importance of respecting chronological age and individual differences. Their results do not establish a universal calendar, but they help to question the idea that learning and developing autonomy are possibilities restricted to childhood (Buckley et al., 2002).

In practice, it is worth reviewing materials, forms of treatment and opportunities. A text can have accessible language and address music, sport or technology. Simplifying the presentation does not require infantilizing the subject. At the same time, respecting age does not mean prohibiting tastes that young people continue to enjoy.

Autonomy and independence: a useful distinction

In everyday life, we can distinguish independence — carrying out a task with little or no help — from autonomy, which involves participating in choices and managing aspects of one's life.

A young person may need assistance to get to a course and choose which course they want to learn about. You may need support understanding prices and deciding what to buy within a budget.

This participation also includes saying “I don’t understand”, “I need help” or “I prefer another option”. The National Down Syndrome Society highlights that expressing needs and preferences is part of self-advocacy (self-advocacy): the ability to take a position on issues that concern oneself (NDSS).

To make a decision accessible, we can present concrete alternatives, explain consequences and offer time. Photographs, demonstrations and communication resources can help.

The care is to check whether the choice was understood and whether it represents the teenager's preference, even when it differs from ours.

Teach responsibilities in real situations

“He needs to have more autonomy” is a broad desire. To guide teaching, we need to transform it into an observable action.

Instead of demanding organization in a generic way, we can agree that the teenager will separate the materials for the next activity using a list. Then, observe which steps you need help with.

A possible route is:

1. Choose a meaningful skill: something useful and that makes sense for the young person.
2. Divide the activity into steps: show what happens first and what comes after.
3. Practice with support: demonstrate, carry out together and allow attempts.
4. Adjust help: reduce it when it is safe and resume it when necessary.
5. Try other contexts: check whether the skill also appears outside the situation in which it was taught.

For a simple purchase, for example, choosing the product, checking the price, payment and checking the purchase can be handled, initially with monitoring.

Travel and other activities that involve risks require individual assessment and compatible supervision. Knowing how to repeat a route does not, in itself, demonstrate the ability to deal with unforeseen events.

These examples reflect the gradual teaching of practical skills discussed by Buckley and collaborators; they do not constitute a program that is the same for everyone (Buckley et al., 2002).

Body, privacy and relationships also need conversation

Adolescents need to receive accessible explanations about body changes, hygiene, menstruation, intimacy, feelings and relationships. Education about sexuality must consider understanding and offer space for questions, without assuming that the diagnosis eliminates emotional interests.

Some content deserves explicit teaching:

• recognize and name body parts;
• understand public and private situations;
• express agreement, refusal and discomfort;
• respect another person's refusal;
• identify trustworthy people and seek help.

These themes are part of the education guidelines on sexuality and relationships for people with Down syndrome. The approach includes bonds, respect, consent and protection, in addition to biological information (Wood, 2004).

At home, knocking on the door and explaining body care before carrying it out are concrete ways of respecting privacy. When there is a need for assistance with hygiene, this respect remains necessary.

Teaching protection also does not transfer the responsibility for preventing violence to the teenager. Adults and institutions remain responsible for safe environments, listening and responding to situations of abuse.

Friendships need opportunities

Teenage life includes companionship, fun, shared interests and the possibility of belonging to a group. It is worth asking who the young person likes to be with and what activities they would like to experience.

Presence in a collective space does not guarantee friendship. It is necessary to observe whether there are exchanges, invitations, choices and effective participation, overcoming once and for all the veiled isolation that we discussed in The Illusion of Presence in School Inclusion.

Leaving school can reduce frequent contacts and make it difficult to maintain bonds. Therefore, transition planning must include social opportunities and practical conditions, such as transportation and support for arranging meetings (NDSS).

Family and school can encourage meetings around common interests, with people with and without disabilities. Monitoring must consider the young person's needs and be reviewed as they gain experience.

Leisure and friendship deserve their own place in the routine. They do not need to be justified as therapeutic exercises.

Preparing for adulthood before leaving school

Waiting until the last school year to discuss the future makes planning more difficult. The transition needs to consider available interests, skills, support and opportunities, with the participation of the adolescent. Continuing education, work and housing are among the fields frequently addressed in this process.

We can start with concrete questions: what would you like to know? What activities do you feel good at? What help would facilitate your participation?

The school can bring academic learning closer to these experiences through inclusive pedagogical practices and contextualized: understanding schedules, reading instructions, writing messages, comparing prices and organizing appointments. This expands the uses of knowledge and can coexist with literature, science, art and other curricular contents.

Discovering courses, visiting professional environments and trying activities helps to build preferences. The diagnosis alone does not indicate a profession.

It is also a good idea to agree who will support each stage and when the plan will be reviewed. The concrete possibilities depend on services and local conditions. A meaningful future can take different forms; employment and complete independence are not measures of a person's worth.

Health and participation in one's own care

The transition also involves organizing continuity of health monitoring. The teenager can begin to prepare questions, report discomforts and learn about the purpose of the care they receive. Visual resources and prior notes can facilitate this participation.

Important changes deserve attention. Loss of previously acquired skills, marked reduction in communication, isolation or deterioration in daily functioning require professional assessment. They should not be automatically attributed to adolescence or Down syndrome. Guidance from the American Academy of Pediatrics includes attention to mental health and skill regression at this stage (Bull et al., 2022).

How can psychopedagogy contribute?

Psychopedagogy can help understand how adolescents learn, what barriers they encounter and how they use knowledge in everyday situations.

The work may involve organizing tasks, understanding instructions, reading, writing and functional mathematics, linking this learning to the young person's interests. It can also help schools and families define clear objectives and monitor the necessary support.

Recording that he started consulting a list to organize the materials offers more information than simply stating that “his autonomy improved”.

This construction requires dialogue between professionals, respect for the responsibilities of each area and support conditions for the family. Fear, fatigue and lack of services are real difficulties. Expanding opportunities cannot depend exclusively on family efforts.

A future built with your participation

Preparing for adulthood happens in small, recurring decisions: listening to a preference, explaining a change, teaching responsibility and giving space to try.

The companion from that cafeteria can remain nearby. It can help understand the menu, clarify pricing and support communication. And you can allow the teenager to make the request.

In this gesture there is a possibility of growth: having your will recognized and finding support to express it.

The question that must accompany all planning is simple: is the teenager participating in the construction of this future?

References

BULL, M. J. et al. Health Supervision for Children and Adolescents With Down Syndrome. Pediatrics, 149(5), e2022057010, 2022. DOI: 10.1542/peds.2022-057010.

BUCKLEY, S.; BIRD, G.; SACKS, B.; ARCHER, T. The achievements of teenagers with Down syndrome. Down Syndrome News and Update, 2(3), 90–96, 2002. DOI: 10.3104/updates.172.

WOOD, A. Sexuality and Relationships Education for people with Down syndrome. Down Syndrome News and Update, 4(2), 42–51, 2004. DOI: 10.3104/practice.335.

NATIONAL DOWN SYNDROME SOCIETY (NDSS). Post-High School. Available in educational resources for life transition. Accessed on: 12 September. 2026.

NATIONAL DOWN SYNDROME SOCIETY (NDSS). Friendships & Social Relationships. Accessed on: 12 September. 2026.

NATIONAL DOWN SYNDROME SOCIETY (NDSS). Self-Advocacy at Medical Appointments. Accessed on: 12 September. 2026.