At the NAR, you conduct research with and for people with autism. In your opinion, what is still going wrong when it comes to supporting this group?
Often, the focus is mainly on what someone with autism can’t do or the obstacles they face. As if that person has to conform to an existing norm. But you can also flip that around and look at what adjustments in their environment would help them. What does this person need to be able to live a good life? I see that many people struggle because they’re trying to meet expectations that don’t fit them at all.
What do people with autism tell you they need most?
In the conversations I have, I hear from many people that they struggle with loneliness. Often, they actually really want connection and deep relationships, but find it difficult to build or maintain them. That’s also incredibly complicated. People long for connection, but it also takes a lot of energy.
In addition, people say they want more balance in their daily workload. Things like grocery shopping or doing housework, working, and maintaining social contacts. Trying to juggle all of that is often too much. Autism is also often accompanied by sleep problems. People tell me that they feel like they’re “on” all day long and that at night they’re still processing stimuli, conversations, or events, which makes it hard for them to relax. All these factors can cause people to get stuck and eventually develop symptoms of depression, for example.
In daily life, there are also other situations where autistic people encounter prejudice, lack of expertise, and communication problems. For example, in healthcare, at work, or when dealing with government agencies. Even in mental health care, there is still often a risk of misdiagnosis, leading to years of ineffective treatments until the correct diagnosis is finally made.
The NAR distinguishes itself by conducting research in collaboration with people with autism. Why is that so important?
Because it leads you to conduct research differently and ask different questions. For a long time, science focused primarily on the origins of autism and biological factors. But when you ask autistic people themselves what they’d like to know, their questions are things like: How do I organize my life? How do I deal with the challenges I face every day? Through them, we focus on what truly helps improve their lives.
What exactly does that collaboration look like?
At the NAR, we try to apply this at every level of the research. It starts with the research questions themselves. What do people themselves consider important to investigate? That’s why we ask our members which topics and questions they want to put on the research agenda, such as this year with the Research Agenda 2026.
They also help ensure that the questionnaires we administer in our studies are easy to understand and that we interpret the results correctly. In my intervention research, for example, participants assess whether the exercises align with their experiences. Then I receive emails with detailed descriptions of why an exercise does or does not work. Sometimes that collaboration goes even further. For instance, a participant from one of my studies collaborated as a co-author on a scientific article. People with autism are not just so-called test subjects to us, but co-researchers. Our team is also neurodiverse.
An important project within the NAR is Moodbuster. What exactly is that?
Moodbuster is an online treatment program based on cognitive behavioral therapy. We use it to treat depressive symptoms and, in collaboration with the target group, have specifically adapted it for people with autism. In the program, you set short- and long-term goals. You make plans to get out more and do fun things, and you work on dealing with negative thoughts.
It’s easier to offer an online program like this on a large scale than one-on-one sessions with a psychologist. It’s great that people—given the long wait times in mental health care—can get started right away without having to wait for months. It can also be helpful for people with autism, for whom the barrier to seeking care is sometimes very high, to simply get started with exercises from the safety of their own living room, while still being guided by one of our students.
Why doesn’t standard care always work well for people with autism?
There are several reasons for this. For example: Someone with autism and depression ends up seeing a practitioner who has little knowledge of autism. In that case, the context of the symptoms isn’t always taken into account. In autism, depressive symptoms may stem from difficulties with social interaction. If, as a practitioner, you are unaware of the autistic “context,” this makes it harder to resolve the symptoms.
Why is additional funding needed?
Over the past few years, together with people with autism, we have invested a great deal of time in adapting and developing several online support programs for people with autism, specifically for sleep problems (i-Sleep Autism) and depression (Moodbuster Autism). Now it’s time for the next step. The programs aren’t currently available to the target group, even though we want more people to be able to use them. This way, you can take advantage of the benefits of online treatments, such as scalability. With additional funding, we can work on a platform that makes this support available to all people with autism. This way, more people who are often left out can use something that really works.
