The gender imbalance among those diagnosed with autism spectrum disorder (ASD) is 4 to 1 boys to girls. When considering those diagnosed with ASD without intellectual disability, the imbalance is even greater – 7:1 (Skuse & Mandy 2015). One consequence of this gender imbalance is that parents of girls with ASD often find themselves without a supportive community. Girls with ASD not only present differently from boys with the diagnosis, they also face unique challenges as females (Faherty 2002). Parents of girls find that, within the ASD parent community, they are in a distinct minority. Turning toward the parents of neurotypical girls for support may not create a great fit, as parents find that their daughters may need a different kind of help to support their daughters as they face the challenges of growing into young womanhood.
A recognition of this led to the creation of a support group for parents of tween (ages 9-13) girls with ASD. The group has run successfully for two years and has now been expanded to include parents of teen girls as well. Prior to the group launch, we attempted to gain a sense of whether there was a need for this kind of support for parents of girls. We held an informal discussion night in which staff members who had daughters with ASD lead a discussion specifically for parents of girls ages 18 and below. That event was followed by a book talk by Eileen Riley-Hall, author of Parenting Girls on the Autism Spectrum. The turnout and enthusiasm for these events led us to believe that parents of girls needed more services geared specifically for them.
In spite of the enthusiasm the parents had indicated, the group was slow to start. In the fall of 2014 we launched three parent support groups, including the group for parents of girls. While the other two groups which were open to parents with male or female children filled quickly, the parents of girls group had to be delayed by a month to give it time to meet the minimum number of participants to run. We generally advertise our programs by email. In this case, I made personal calls to those who attended the previous events and were eligible for the group based on their daughter’s age. I also made the decision to run the group on the weekend, rather than an evening during the week, so that parents from outside the surrounding area could attend. While the majority of attendees were local, we did have parents who traveled over an hour to attend the group. Even within a major metropolitan area – we are located just outside of Boston – it took some flexibility to initially fill the group.
I began the group thinking that it would be psychoeducational and planned for each meeting, with topics and resources ahead of time. I imagined that parents of females who were on the cusp of adolescence would want information on puberty, hygiene, and social skills. While it was the case that most group member were struggling with some of these issues at home, it was clear that they did not need a curriculum. Even though their daughters were close in age, the variation in physical development was quite significant. For example, while there were parents in the group who were very worried about how to address their daughter’s first menstrual cycle, there were many parents for whom this milestone was in the past. The variety of experiences meant that these parents could advise one another based on their own experiences.
As the leader, I felt it was important to be flexible, so I discarded my curriculum and addressed the issues that surfaced naturally. The parents’ concerns were very much in keeping with the growing literature about females diagnosed with autism without intellectual disability; mental health issues came to forefront rather quickly (Mandavilli 2015). Most parents expressed concern about their daughter’s emotional regulation and anxiety. Related issues raised by the group included school refusal, self-injury in the form of cutting, and depression. As with any support group, members were able to normalize experiences they perceived as shameful by sharing them with others and learning that they were not the only families with these issues.
The sense of parental isolation was quite striking. While some parents had daughters who were diagnosed young, many had been diagnosed quite recently. Because we do not require that participants in any of our programs or services have a formal diagnosis, there were participants who were in the process of getting the diagnosis for their daughters. This is not terribly surprising, as the literature tells us that girls with these kinds of profiles are diagnosed on average two years later than boys (Mandavilli 2015). The period before diagnosis can be difficult for parents, who are struggling with children they don’t completely understand. Parents report receiving advice from friends and family members that is unhelpful at best and at times insulting. In fact, an early group meeting focused primarily on the issue of feeling judged by members of the extended family, friends and neighbors.
Group members also developed relationships with one another and between their daughters outside of the support group setting. We encourage this, as one of the goals in our mission is to facilitate the creation of community for those with ASD and their families. Additionally, many of the parents were interested in expanding their daughters’ social circles. Their daughters had experienced a great deal of social rejection and the parents were very concerned about their isolation and loneliness. Nearly every parent expressed pain at the social rejection each girl had experienced.
This fall the group will enter its third year. The continuing interest in this program demonstrates the need parents of girls have for supportive communities. Hopefully, the increased understanding of the different presentations of ASDs will lead to earlier diagnosis of girls, so they and their families can access the support they need. Parent support groups can be an effective part of that support.
To learn more about AANE programs and services as well as find information on ASD in girls and women, please visit our website, www.aane.org.
References
Skuse, D. & Mandy, W. (2015) The female autism conundrum. Retrieved from https://spectrumnews.org/features/webinars/webinar-the-female-autism-conundrum/
Faherty, C. (2002) Asperger’s syndrome in women: A different set of challenges? Retrieved from http://autismdigest.com/aspergers-syndrome-in-women/
Mandavilli, A. (2015) The lost girls. Retrieved from https://spectrumnews.org/features/deep-dive/the-lost-girls/
