Join the Fann Club – Results from an Interdisciplinary Network for Professionals on ASD in Females

Background:

The diagnosis for ASD seems based on the male phenotype. Consequently, ASD is diagnosed more frequently in males than in females (4.5:1; CDC, 2012). Women are often misdiagnosed or diagnosed much later in life (Shattuck et al., 2009). The different manifestation of ASD in females is not reflected in the current diagnostic DSM-criteria (van Wijngaarden et al., 2014; Zwaigenbaum et al., 2012). Despite the fact that the DSM-5 states that “girls without accompanying intellectual impairments or language delays may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties”, it lacks concrete criteria to diagnose these females with ASD. Our project group will develop and implement scientifically based knowledge to fill in this gap regarding women with ASD.

In order to do so, the FANN was initiated in March 2017. The FANN is a Dutch interdisciplinary network for professionals (psychologists, psychiatrists, researchers, etc.) who are committed to improve the diagnostic and treatment of females of all ages with autism. Also experienced experts (women with ASD) participate in this network. The members of FANN are all experts in the field of autism in girls and/or women.

Objectives:

The objectives of FANN are to encourage knowledge exchange, to promote collaboration in scientific research, and to prompt implementation of scientific knowledge in clinical practice.

Methods:

The FANN core group meets at least twice a year and consist of 48 registered members, from all parts of the Netherlands. The FANN friends group is a LinkedIn group and consists of 167 members. Statistics are constantly being tracked.

Results:

Based on an online questionnaire, the FANN core group indicates that the following subjects are important: being a knowledge network, providing a (digital) platform, unraveling woman-specific ASD diagnostic features, ameliorating the recognition of ASD in women (including case identification), improving quality of care for women with ASD (preventing misdiagnoses, promoting better and faster diagnosis, developing effective therapy), fostering destigmatization, focusing on acceptance of women with ASD in society, and promoting scientific research.

The FANN friends group - on LinkedIn - shares the following: information on ASD in females gathered from conferences (28%) and articles (22%), advised materials for females with ASD (16%, f.i. specialized ASD cooking recipes), advised therapists with an eye for ASD in females (16%, not only in the Netherlands, but also in Belgium), media attention (12%), research (3%) and miscellaneous (3%). The latter information expands every week. At the conference, the most current data will be presented.

Conclusions:

The FANN exists since March 2017, but already inspired many people. There is a great need for such a network, which also provides a unique angle on females with ASD.