About a year ago, when doing research for my recently published book Girls Growing Up on the Autism Spectrum (Jessica Kingsley Publishers), I stumbled upon a Yahoo! group, “Autism in Girls” (Autism_in_Girls-subscribe @yahoogroups.com). With approximately 1500 members, and a core group of active posters including parents, professionals and women with ASDs, this group has been a blessing for families with daughters and a wealth of information for professionals and educators who work with girls with ASDs. New members are asked to briefly introduce themselves, and every time a mother or father posts, I am struck by how alone and isolated many of these families feel. Some families have yet to receive a diagnosis for their daughter, some are reeling from the findings of a recent evaluation, and others are reaching out to finally join a community that they can connect with. Despite differences in age, level of functioning, geographic location and culture and beliefs, a familiar refrain is echoed in every new post – “I am so glad to have found this group.”
As a professional working with families of girls with ASDs over the last ten years, I greatly appreciate the sense of connection experienced by members of the Autism in Girls list serve. Parents and individuals with ASDs have shared with me that they feel alone in an autism community that until very recently has not truly considered sex differences in understanding autism spectrum disorders. Girls who participate in our girls growing up programs share that they “finally feel like I’m not the only one,” and parents often lament not being able to find resources that are geared towards girls with autism. Just this month, issues raised at our clinic by females with ASDs and their families have included: medication effects and side effects; body image disturbances and eating disorders; self-injury; managing pre-menstrual syndrome; limited understanding of pregnancy prevention; girl bullying and fitting in with a peer group; frustration with receiving a late diagnosis; and supports for older women with ASD.
In a recent article in the New York Times (August 5, 2007), entitled “What Autistic Girls are Made of,” Ami Klin, director of Yale University’s autism program, described females with autism as “research orphans,” suggesting that because research studies primarily include samples of males with ASDs, their findings may not be applicable to females and therefore may do little to shed light on the experiences, development, biology, assessment, and treatment of girls and women on the autism spectrum. Taking this “orphan” analogy further, many families of girls with ASDs feel as if they are orphaned in all areas – that they lack community supports, resources, and access to experienced professionals. Fortunately, this is starting to change.
A recent increase in media attention during the last two years, including articles in the NY Times (August 2007), Newsweek (November 2008) and Psychology Today (Flora, 2006), news coverage on ABC’s Night Line (January 2008), and a contestant with Asperger’s on America’s Next Top Model, has resulted in the spotlight finally being turned to differences between girls and boys with ASDs, and what these differences may mean for issues related to assessment and treatment. Though limited in number, research studies are also emerging which contribute to a small but growing body of literature addressing sex differences in ASDs. Studies have begun to examine differences in symptom presentation, developmental trajectories, prevalence rates, assessment, and diagnosis (e.g., Carter et al., 2007; Hall et al., 2006; Kalyva, 2008; Koenig & Tsatsanis 2005; McLennan, Lord & Schopler, 1993; Reese et al., 2005).
As a field we need to develop a much better understanding of girls with ASDs, including how best to support parents and their daughters. However, I am encouraged that we are moving in the right direction towards learning how to help girls and women with autism spectrum disorders reach their full potential.
What Can Professionals and Educators Do to Support Clients and Families of Girls with ASDs?
- Listen carefully to and validate parents’ concerns. Correctly identifying girls with ASDs can be very challenging and many families will have received confusing and conflicting information about their daughter, leaving them feeling frustrated and often disillusioned.
- Encourage diagnostic clarification and consider that the symptoms of females with ASDs may differ from those of males. Refer girls for further assessment even if they come close to but do not meet strict cut-offs on screening tests in all areas.
- Become well-versed in what is currently known about females with ASDs and develop an understanding of typical sex differences in behaviour and development; start with Koenig and Tsatsanis’ chapter on girls with Pervasive Developmental Disorders in the Handbook of Behavioural and Emotional Problems in Girls (2005).
- Work to bring girls with ASDs and their families together. It can go a very long way for families and their daughters to experience a sense of validation and connection: you are not alone.
- Assist families in accessing resources about females with ASDs. Though there are few that specifically address issues facing girls, they do exist, including online articles and books (parents and women and teenage girls with ASDs have written autobiographical accounts).
- Investigate whether there are programs for girls with ASDs in your community. Some clinics offer social skills groups specifically for girls (see Fay J. Lindner Center for Autism, The Gray Center for Social Learning and Understanding).
- Encourage families of females with ASDs to participate in ongoing research.
Dr. Shana Nichols, PhD, is Clinical Director and Researcher at the Fay J. Lindner Center for Autism. Dr. Nichols is author of the new book, “Girls Growing Up on the Autism Spectrum” (Jessica Kingsley).