It is for this reason that she has teamed up with colleagues Ruth Van der Hallen, Susan van Rijen and Femke Truijens to study the impact of the COVID-19 pandemic on children and young adults with Autism Spectrum Disorder (ASD) and their parents. “We want to find out whether they are experiencing more or fewer difficulties, whether they are suffering more or less from depression or anxiety, and whether their autism symptoms been exacerbated or alleviated. We also want to check how they are experiencing the changes and whether they are confident that everything will turn out alright again.”

Dekker herself is a psychologist and researcher whose focus is on autism and sexuality. For this research, which is funded by ZonMw, she and her colleagues from the EUR are collaborating with three mental healthcare institutions in Rotterdam that provide specialist care to children, young people and families affected by ASD. Dekker goes on to explain that the heterogeneity of ASD means each of these children and their parents have different experiences. “People with ASD, who have a strong need for routines, will have difficulty breaking them. Others whose problems are mainly connected with social interaction might actually feel a little better now because there is less pressure on them to meet people or shake their hand. Conversely, there are ASD patients who have a strong need for social interaction, and this is now becoming increasingly difficult.”

Deviating from the norm

According to Dekker, the reason the corona measures can be particularly challenging for people with ASD is that their introduction is based on what is appropriate for most people. “It seems the further you ‘deviate from the norm’, the less you fit in at times like these. Nevertheless, we can take account of people with ASD and their families perfectly well, providing we know how to go about it.”

This is also what prompted her to conduct this research. “I think we can help make it easier for children with ASD and their parents to get through these tough times. We know that people with ASD are also more vulnerable to long-term consequences. If things aren’t going very well, they will continue along a similar vein for a longer period of time. We need to respond accordingly and take on board lessons for the future.”

These lessons are vital because there has never been any research into the effects of such fundamental events on the lives of families affected by ASD, not even during the SARS epidemic, for instance. According to Dekker, the results of this research may be able to help improve the situation of this target group at a range of levels during lockdowns or, for example, during a move, divorce or bereavement. The results will also improve knowledge among clinicians and the government so that these children and their families can be helped more effectively and promptly.

32 weeks pregnant

Leaving lockdown to one side, this is also an extraordinary time for Dekker on a personal level. At the time of being interviewed for this article, she is 32 weeks pregnant and shortly due to go on maternity leave. “Getting a subsidy of this kind is complex, and then you have to consider that for a one-year project, you are going to be out of the running for four months. But apart from that, it’s not really an issue. For example, in Zoom meetings you can’t see that I’m pregnant at all, so a lot of colleagues don’t even know it yet! I find the hardest part is that being pregnant means I get tired faster, and I could use the energy at the moment because my two-year-old daughter is with me at home due to lockdown.”

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Dekker will be back in the department by mid-May, which is when the results from the first survey will already be in. She says a second survey is expected to be held during a quieter corona period, which will hopefully be the case in April or May. “We have arranged to present the preliminary findings to parents and clinicians as soon as they are available, in the hope that we can be of immediate assistance. From a research point of view, I am thrilled that whenever such a social issue arises, I am in a position to get involved in it. I get the chance to conduct research into it rather than just reading news about it.”

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