Becoming an adult is challenging for most people, but for individuals with autism and other neurodevelopmental conditions, the transition to adulthood can be particularly demanding. In her dissertation, researcher Maria Löthberg at KI explored how the service support in daily living can be improved to better meet the needs of these young individuals.
Moving out, starting work or studies, and building new relationships are examples of changes that place high demands on young adults. For those with autism, ADHD, or other neurodevelopmental conditions, this transition can be especially challenging. An increasing number of individuals today receive support in daily living -a municipal social service aimed at making daily life easier. But what does this support actually look like, and does it work as intended? Could the TRANSITION program help make the support more tailored to individual needs? These were the questions support worker Maria Löthberg set out to explore in her doctoral dissertation, in which she interviewed both support workers and young adults.
-Support in daily living is a complex intervention, and I have seen both its potential and its limitations. I hope this dissertation can contribute knowledge that helps provide young people with high-quality, more individualized support, says Maria Löthberg.
Four Studies - One Comprehensive Picture
The dissertation consists of four studies. The first shows how housing support is often shaped by practical and organizational conditions, rather than by the needs of the young individuals. Many support workers also expressed a need for more knowledge about autism and ADHD, and a desire to provide more tailored support.
In the second study, the TRANSITION program was tested.
- It's a program we developed at KIND (Center of Neurodevelopmental Disorders at Karolinska Institutet) explains Maria Löthberg. The young adult and the support worker review information about various areas of life and then jointly set concrete goals within selected areas, and begin taking steps toward those goals. Many reported positive changes in their daily lives, such as gaining better structure, becoming more socially active, or starting to study, says Maria.
The third study focused on remote provision of support. Here, support workers were more positive than the young adults.
- Many young people emphasized the importance of meeting someone in person, and the relationship with the support worker is often crucial for the support to be effective, says Maria Löthberg.
In the final study, young adults and support workers co-produced the guide 'Designing My Support in Daily Living'.
-It was incredibly rewarding to co-create the material. Many highlighted that the fact it was developed together with other young people made the guide especially valuable, says Maria.
The result included improved working relationships and increased quality of life for several of the young adults who used the guide.
What Happens Next?
At present, the TRANSITION program and the guide are mainly used within research settings, but Maria Löthberg hopes they will soon be implemented in services such as habilitation.
- The materials and the program are ready, and now we know that they work. The next step is to get municipalities and other stakeholders interested. I also hope that the support workers' expressed need for education about autism and ADHD is something municipalities can offer their staff-along with structured supervision, like in TRANSITION. I believe that would make support in daily living a more individualized and effective intervention for young adults, she says.
Tips & Insights
- Ask about support in daily living. Your local social services can provide information about what is available in your area.
- Ask to be involved. In the project, a guide was developed that allowed young people to describe how they wanted their support to be structured. Talking about one's needs increased the sense of being heard and improved both the relationship with the support worker and overall quality of life.
- Ask for clarity. Structured approaches can make a big difference. Ask whether there are tools or programs available-such as TRANSITION.
- Value the relationship. A trusted contact person is often crucial for the support to be effective. Receiving support remotely (e.g., via video calls) can be a helpful complement, but it's also important to meet in person from time to time.
