Rethinking Autism Support: What is used, what helps, and what matters?

This dissertation investigates how autistic individuals and their families use and experience support, and how this aligns with existing recommendations. It emphasises the importance of understanding the choices people make, the reasoning behind them, and the lived effects of different support types from guideline-endorsed treatments to alternative and controversial interventions. By combining quantitative and qualitative studies, the research highlights patterns, preferences, and mismatches in autism support. Chapter 2 examines how parents of 1,464 autistic children in the Netherlands choose among guideline-recommended, mainstream, and “other” (often alternative) treatments. Results show that treatment use is more strongly associated with child characteristics such as educational placement and co-occurring diagnoses than with core autism traits. For instance, children in special education or with additional diagnoses were more likely to receive non-guideline therapies. Family demographics, such as parental education, also played a role. The study suggests that support decisions are shaped by broader contextual and diagnostic factors, not just autism-related needs. Using data from 1,315 autistic adults, chapter 3 explores the perceived helpfulness of various support types. Individual psychological interventions (e.g., therapy with a psychologist) was most frequently used and rated as most helpful. Practical support (e.g., related to employment or social relationships) was commonly used but seen as less helpful. Medication received mixed evaluations: SSRI’s and ADHD medications were often helpful, while others were not. The findings indicate that autistic adults prefer support that is tailored, respectful, and focused on emotional well-being. Chapter 4 explores how 210 parents of autistic children assess the helpfulness of various services. Commonly used services such as psychoeducation and school-based interventions were rated as less helpful, despite their widespread availability. Conversely, behavioural therapy and medication, although used less often, were rated as more helpful. Overall, the findings reveal a mismatch between availability and perceived effectiveness: services most accessible to families were not always those seen as most useful, pointing to the need for better alignment between support provision and family-reported needs. Chapter 5 investigates the use of alternative and complementary treatments via survey data from 1,989 participants and patient records from 4,520 patients. About 30% of autistic individuals had used at least one alternative treatment (e.g., homeopathy, special diets), often alongside regular care. Usage was linked to early diagnosis, comorbid conditions, and demographic factors like parental education. While only a minority reported using controversial treatments (e.g., vaccine-related), the findings emphasise the popularity of unregulated treatments and the need for clearer guidance and risk communication. Building on chapter 5, the qualitative study in chapter 6 uses interviews to explore personal accounts of using alternative and vaccine-related treatments. While some participants valued holistic approaches and personal attention, others reported disappointment or harm, particularly from treatments that framed autism as something to be cured. The study highlights the tension between experiential benefit and lack of evidence, and points to a need for stronger oversight and better coordination between mainstream and alternative care providers. Chapter 7 explores diverse views on ABA through a mixed-method study involving parents, autistic adults, and professionals. While some parents valued ABA for building life skills, many autistic adults reported long-term negative effects, such as emotional distress or masking. Differences in perceived goals and outcomes showed the tensions between groups. The study advocates for more critical evaluation of ABA practices, stricter quality control, and inclusion of autistic voices in therapy development. Together, these chapters demonstrate that meaningful autism support requires more than compliance with clinical guidelines. It must centre the lived experiences, preferences, and changing needs of autistic individuals and their families prioritising respectful, flexible, and collaborative care.