The PhD research of autism and care specialist Kim Jonkman shows that autism care in the Netherlands often does not match what people with autism themselves find most valuable. She compared the forms of support that are actually used with what those involved perceive as effective.
Her conclusion: there is a gap between supply and need, and it also differs by target group.
Personal care
Jonkman shows that autism care should pay more attention to people's own experiences and wishes. She underlines that good support does not have to be standard - but personal. Care providers, schools and policymakers can use these insights to better match what really helps people. For example, by making more room for calm and recognition, instead of focusing mainly on 'adaptation' or 'self-reliance'.
It is also important not to lump parents and adults together: their needs can be very different. In the short term, organisations can reflect on their provision: does it match what clients themselves perceive as valuable? In the longer term, this research helps make care less bureaucratic and more people-centred - something that ties in well with current debates about appropriate care and mental health.
"Autistic people need to be involved at every step: in research, planning and choosing the right help. To achieve this, professionals must learn to listen and communicate well with autistic people and their families. By working together with autistic individuals, parents, carers and researchers, we can make care better and more respectful," Jonkman said. "Good autism care is complex. It should be flexible, respectful and tailored to the person themselves."
Support for the whole family
Care should also be easier to find and better organised. Many families now feel lost in the system. Clear points of contact and support for the whole family (including parents and siblings) could reduce stress and make care more effective.
Neurodiversity-friendly care means starting from someone's strengths and identity, rather than trying to change them. This includes giving people freedom of choice, making the environment less stressful, avoiding negative language, and allowing autistic people to set their own goals. Such care must be developed together with autistic people, not just for them. It also means looking differently at what 'progress' means: not just fewer symptoms, but more well-being, self-confidence and a sense of being understood.
Ethical guidelines and clear rules to make interventions safe and effective
Kim Jonkman's PhD research shows that support for autistic people can be made safer, fairer and better tailored to their needs. This requires clear rules, ethical guidelines and better training of professionals. This will help make treatments like ABA or alternative therapies safer and more based on good information. With better guidelines, more collaboration and systems that grow with people, we can build a world where autistic people and their families feel heard and supported, and can flourish.
Jonkman will defence her PhD at Vrije Universiteit Amsterdam on 30 September.