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The Initiative for Girls and Women with Autism Spectrum Disorders at Yale

In the summer of 2013, a program for building relationships and promoting community for teenage girls and women with autism spectrum disorders began at the Yale Child Study Center, supported by a gift from Jim and Marilyn Simons. The initiative was conceptualized as a means of bringing together teens and women, not for clinical intervention, but simply to offer an opportunity to experience the joy of sharing activities and conversation with friends. At Yale, we recognized that girls and women with an ASD diagnosis are often socially isolated. They find it challenging to meet like-minded friends in school or in their community. Social programs developed for those with ASDs often have many more males than females, so girls and women don’t have the chance to develop the kind of close connections that neuro-typical girls and women tend to have. All this means that girls and women with ASDs end up feeling lonely and sad. This kind of social isolation results in a poor quality of life for these individuals, with concomitant risks to mental and physical health.

At the Yale Child Study Center, our mission is to improve the mental health of youth and families, to advance understanding of their psychological and developmental needs, and treat and prevent mental illness through the integration of research, clinical practice, and professional training. We care deeply about the lives of these teens and young adults and are focused very strongly on doing what we can to make their lives healthy and joyful.

Our program began with a series of focus groups for families, with targeted questions for parents about social challenges and other issues that impacted their daughter’s health and happiness. Parents targeted a lack of friends, limited social opportunities, bullying and cyber-bullying, difficulty helping their daughter manage personal hygiene and self-care, and worries about their daughter’s safety and vulnerability as they tried to make their way in the world. We also noted poor adaptive functioning – day to day living skills – in females with ASD as compared to their neuro-typical peers. In a sample of females with ASD culled from clinic settings at Yale and at Marcus Autism Center in Atlanta, we found that girls from ages 8 to 18 years of age showed adaptive functioning that was delayed relative to typical peers by 2 ½ standard deviations (Saulnier et al., 2016). Our focus group work and the results of this study have helped us to understand what kinds of programs could support teenage girls and young women with ASD as they develop.

Our offerings have varied over time based on the needs and interests of participants. We began with a weekly group for little girls, ages 8 – 11 years, which included art, jewelry making and yoga classes. Yoga was particularly successful; our girls enjoyed the focus on the body as well as the process of centering oneself. Our teens got involved in horseback riding, pizza parties, movies, and a twice monthly art class taught by an artist from Yale Center for British Art. In May of 2016, we presented Artworxx, an exhibition of art created by our teens at the Yale Center for British Art. Over 200 visitors attended the opening reception and viewed the exhibition. It was a tremendous success!

For young adults, the Initiative offered Lean Out: Networking and Working for Women with ASDs, a program addressing a significant problem for adult women with ASDs, finding and maintaining employment. We used the phrase “lean out” as a bit of a play on Sheryl Sandberg’s book, Lean In: Women, Work and the Will to Lead. Ms. Sandberg’s book described the tough working environment that women face in the contemporary era in America, and leaning in means: “being ambitious in any pursuit.” We thought about leaning out as an expression that captures the need to network and build relationships effectively in order to find and maintain satisfying employment. Lean Out was supported by a community service grant from Autism Speaks. A major focus was learning the “soft skills” needed to function in the workplace, including presenting oneself at the interview and in the workplace, socializing on the job, and collaborating with others on work projects. Eighteen women attended the program, which included presentation of important information using visual supports (Powerpoint, workbooks) as well as targeted discussion. A significant factor that emerged through the classroom discussions was that anxiety played a large role in impeding these women from pursuing the work they would like. Thus, our revised curriculum addresses this issue. The Lean Out Curriculum, participant workbook and slides are available for download at no charge is available on our website (http://childstudycenter.yale.edu/autism/clinical_services/initiative/young_adults/). We are hopeful this program will be used and modified to fit the needs of young women anywhere who need help with this important life task.

A weekly support group for young women began this past winter. Our group tackles any subject that comes up, as participants talk over what it means to cope with parents, siblings, the demands of college and the workplace. We learn about each woman’s experience as they try to navigate through and understand their place the world. A significant piece of this process is helping young women feel self-confident about who they are so they can advocate for what they want and need.

In this program, we strive for an atmosphere that promotes relationship building through sharing ideas and experiences. A lot of conversation about music, movies and media, school work, parents and friendships happens. Positive energy flows through the room as our participants get to know one another, sharing stories, videos and jokes. Participants often exchange numbers and some get together outside of the group. For many of our teens and young women, our activities are the only social opportunities they have.

We hope to expand the program in scope, so that new activities address unique challenges for these girls such as developing a healthy mind and body, developing positive relationships and an optimistic outlook for the future. Our Advisory Board, which includes parents of girls on the spectrum, professionals, and individuals on the spectrum, as well as additional (anonymous) donors have helped in this regard. Parents, young women and teens have been very enthusiastic about the program, with requests for more activities. Our plan is to increase the opportunities for participation for girls of all ages and all levels of functioning and we hope to incorporate clinical training and research into the program over time. The Initiative for Girls and Women with ASD provides an extraordinarily rich social experience for all who participate.

 

Kathy Koenig, MSN, APRN, is Associate Research Scientist, Clinical Nurse Specialist in Psychiatry, and Director, Initiative for Girls and Women with Autism Spectrum Disorders, Child Study Center at Yale School of Medicine. For more information about the Initiative for Girls and Women with Autism Spectrum Disorders at the Yale Child Study Center, please visit http://childstudycenter.yale.edu/autism/clinical_services/initiative/.

References

Saulnier, CA, Koenig, K, Naqvi, B, Moriuchi, J, & Klin, A (2016, May.) Adaptive Behavior Profiles in Girls with Autism: A Comparison to Previously Published Profiles in Boys. Poster session presented at the International Meeting for Autism Research, Baltimore, MD.

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