In the Netherlands, Organization Created to Represent Women in Autism Research
Girls and women are often underrepresented in autism research, leaving scientists and researchers with many unanswered questions regarding how the condition manifests in them. To address this issue, the Female Autism Network of the Netherlands (FANN) was founded in 2017 by Els Blijd-Hoogewys, a Dutch clinical psychologist, and her colleague Marleen Bezemer. Blijd-Hoogewys and Bezemer are researchers at INTER-PSY, a mental health care center in the Dutch city of Groningen. In a Spectrum News editorial this past month, Blijd-Hoogewys discussed she and her colleagues work, and emphasized the importance of representing women and girls in autism research. Blijd-Hoogewys wrote that, in studying women with autism, FANN covered six topics: diagnosis, co-occurring conditions, treatments, sexuality, parenthood and the distribution of general knowledge. Researchers and clinicians throughout the Netherlands formed groups focusing on each topic.
Blijd-Hoogewys noted that since FANN was founded, its core group of 55 has expanded to include almost 800 people from the autism community. The group also has a LinkedIn page for people interested in sharing scientific papers, videos, conferences, and blogs. She added that in May, the group focusing on sexuality plans to publish an article in a popular Dutch psychology magazine on the variability in gender and sexual identity among women with autism.
Blijd-Hoogewys hopes that the data collected by the researchers will help develop interview guidelines for care providers, to better help autistic women struggling with gender and sexual identity related issues. Earlier this year, the parenthood group published an article about mothers with autism in a popular Dutch magazine about children and parenting.
“For researchers, the network has enhanced knowledge and provided a point of contact for autism experts from all over the country,” Blijd-Hoogewys wrote. “And it has proven to be useful for research. The core members have jointly written grants, pooling resources to work on large projects with real clinical relevance.”