Adult health care can expect a lot, all at once. This study does not tell anyone to rush. It is a reminder that having a say in your own care can include choosing who helps, and how.
- Many participants felt they were expected to manage health care before they had enough preparation.
- Doing more yourself does not have to mean doing everything alone.
- These interviews do not test a service or decide what one young person needs.
Questions you can take with you
You do not need to become an expert. These questions can help you talk with a professional or support provider.
- What would I like to handle myself right now?
- What kind of help still feels useful or reassuring?
- Could we write down questions before the next appointment?
Want the study details?Sample, method and evidence type
- Young people
- 19 autistic people
- Age
- 15–25 years (average 21)
- Study
- Interviews, not a support trial
Read on for what was studied, what was found and what remains uncertain.
Independence is not a door that shuts behind you
Moving from children’s health care to adult care can bring new forms, new appointments and new expectations. It is often described as becoming independent. But independence is not one thing, and it does not arrive on a birthday.
Researchers held virtual interviews with 19 autistic people aged 15 to 25. They were not testing a programme. They asked what the transition felt like. Many participants described being expected to organise appointments, medication and conversations with clinicians before they felt properly prepared.
Support can be part of having a say
A strong theme was that autonomy was negotiated and changed from one situation to another. Some young people wanted to do more themselves, while still wanting a parent or another trusted person nearby for part of the process. The study calls this supportive interdependence.
That is a useful phrase because it makes room for choice. A person may want to book an appointment but bring someone with them. They may prefer to answer some questions alone, or ask a supporter to help write things down. There is no single right arrangement.
A small prompt for earlier conversations
The participants also spoke about practical barriers: transport, insurance, changing clinicians, few local options and feeling dismissed. These are not personal failures. They are parts of a health system that can make a transition harder.
For families and professionals, the modest message is to start the conversation early and keep it going. Ask what the young person wants to learn, what they would like help with and how they want support to work. This study does not offer medical advice or a ready-made plan, but it is a good reason not to confuse independence with being left alone.
Limitations to keep in view
- This qualitative study includes 19 volunteers. It explores their meanings and experiences, but cannot say how common each experience is.
- All interviews were virtual and took place in one national context. Experiences may differ in other health systems, communities and families.
- The study did not compare services, test a transition programme or follow people over time. It cannot show that a certain kind of support causes better outcomes.
Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis
Zhang E, Snyder M, Alduraidi W, et al.
Autism · 2026
This article provides general information and does not replace individualized medical, psychological or educational advice.