Parents

Conference: Sex and Gender Differences in Autism Spectrum Disorders

October 29, 2014

Overview

An amazing Conference on Sex and Gender Differences in Autism Spectrum Disorders was held on October 29, 2014 at the DoubleTree Hilton in Manhattan, bringing together scientists, clinicians, parents and young women with an ASD diagnosis to discuss old issues and raise new ones related to females diagnosed with Autism Spectrum Disorder. Alison Singer, President of the Autism Science Foundation, and Alycia Halliday, Chief Science Officer of the Autism Science Foundation co-chaired the planning committee, which included Kevin Pelphrey and Kathy Koenig from Yale, Alice Luo Clayton, Sharon Valencia and Audrey Simons of the Simons Foundation, and Stephan Sanders, University of California, San Francisco.  

What's it like to be a girl or woman on the spectrum?

The day began with presentations from Alison Singer and Kate Palmer on the experiences of being a parent and a woman with ASD, respectively. Some of the discussion focused on what it feels like for a young girl or young adult to be grouped with all boys/men for intervention experiences - and whether a young girl or teen looses out when there isn't an opportunity for exposure to and learning from typically developing girls and women. Kate asked aloud: "what would have happened if I had been diagnosed earlier in my life?" It's a question we can only speculate about at this point.

What are the challenges for diagnosis?

Peter Szatmari, MD, asked "What are the current challenges in understanding sex differences in ASDs? He stressed that the difference in sex ratios found depended on the context of the investigation. The issue of whether we need to change diagnostic algorithms - NOT diagnostic criteria - was raised, and Dr. Sanders questioned whether greater standardization of measurement could help improve our diagnostic accuracy when it comes to females. Kasia Chawarska, PhD, spoke about the way in which assessment must be viewed within a developmental context and as nuanced as possible.

All agreed that current instrumentation may not be subtle enough in design to identify particular features of a spectrum disorder in females.

Dr. Lonnie Zwaigenbaum remarked that with the new DSM-5 criteria, we have greater flexibility to view consider the diagnostic criteria in a dimensional way.

What do girls on the spectrum look like and how do they experience the world?

Dr. Somer Bishop, from the Center for Autism and the Developing Brain at Weill Cornell Medical College presented on: "what do girls and women 'look like' and are they underdiagnosed?" Data from Dr. Marisela Heurta and colleagues suggest that there are differences in restricted and repetitive behaviors with regard to males with ASD. Kathy Koenig, MSN, pointed out that since we know that restricted behaviors and routines occur as part of normal development in toddlers, it is worth considering what function these behaviors serve in the developing child, and whether these behaviors serve the same functions for girls and/or boys with ASDs. Meghan Miller, PhD, stressed the need to examine the profiles of females with ASD as compared with typically developing females. Another topic raised by Audrey Thurm, PhD, of NIMH was that we know very little about the internal experiences of girls. Essentially, the differences in emotional, social and behavioral development between males and females must be considered in order to fully understand how girls and women are impacted by an autism spectrum disorder. Helen Tager-Flusberg, PhD, commented on whether differences in brain functioning between males and females with ASD can be identified through ERP, MRI or other imaging methods. The need for much greater samples for study was emphasized in discussion with Dr. Webb and Dr. Sanders.

Cultural and Social Issues

Leading a discussion about the developmental trajectories of girls/women on the spectrum, Ami Klin, PhD, noted that the questions we are asking are embedded in a cultural context, something we can't loose sight of as clinicians and researchers. In this regard, clinician biases with regard to diagnostic features must be examined continuously, and emphasized in training. Pam Ventola spoke about the clinician's instinct that "something is different" when assessing girls on the spectrum as compared to boys. Rene Jamison, PhD, who leads the very successful "Girls Night Out" intervention program at the University of Kansas Medical Center, described the positive impact of social intervention that includes exposure to typically developing peers.

What will be happening in the future... and who we should be watching!

The Conference was tremendous in terms of the discussion and the participation of the attendees. Suggestions for further discussion, new questions and new collaborations happened. We expect a burst of clinical, training and research activities to result from this stimulating day. Every attendee participated fully and we are grateful to each. In addition to those mentioned above, we were fortunate to have in attendance: Amy Daniels, PhD; Alice Kau, PhD; Lisa Gillotty ,PhD; Meng-Chaun Lai, MD, PhD; Daniel Messinger, PhD; Greg Young, PhD; Ted Hutman, Patty Weisenfeld, Becky Landa, PhD; John Constantino, MD; Christine Nordahl, PhD; Avi Reichenberg, PhD; Donald Pfaff, PhD; Sara Schaafsma, PhD; Alison Jack, PhD; Julie Lounds Taylor, PhD; Jessica Shuttler, PhD; Sharon Valencia and Carmen McLean, PhD. From Autism Speaks: Lisa Goring; Shanise Owens; Robert Ring, PhD; and Jessica Sachs. From the Simons Foundation for Autism Reearch: Marta Benedetti, Dr. Biol. Sci; Wendy Chung, MD, PhD; Pamela Feliciano, PhD; Apoorva Mandavilli, Louis Reichardt, PhD; John Sprio, PhD; and Patty Weisenfeld. Whitney Erikson, MS, Beth Finkelstein of Felicity House, NY; Sylvie Goldman, PhD and Clare Harrop, PhD were in attendance. Finally, Joey, Tondra Lynford, Paulette Maria Penzvalto, and Shirlee Taylor, PhD, rounded out the group. Thank you so much for your contributions!!

Focus Groups: January 2014

The Initiative for Girls and Women with Autism Spectrum Disorders began in the autumn of 2013, when we contacted 500 families with a daughter diagnosed on the autism spectrum to meet with us and talk about their experience. Throughout January of 2014, parents joined us in the evening at the Child Study Center to address the following questions:

  • what are the greatest challenges you've faced with regard to raising your daughter?
  • what resources have been most helpful for addressing your daughter's needs?
  • what kinds of services do you wish had been available? 
  • what barriers to existing services have you faced?
  • have you been able to find knowledgeable professionals to address your daughter's needs?
  • has your daughter suffered from depression, anxiety or other kinds of mental stress?
  • have you or the school system been able to address socialization skills effectively?
  • what unique challenges having you faced raising your daughter?

Parents described many, many concerns with accessing services, finding social opportunities for their child, protecting their daughter from teasing and bullying, and worrying about their daughter as an adult making her way in the world of work and independent living. In addition to discussing the challenges of parenting a daughter with an ASD, we also spoke about activities girls, teens and young women might like to do if given the chance. Writing, drawing, painting, photography and videography were top choices. Other activities mentioned were dance, yoga, gymnastics and equestrian activities.  The discussion gave us food for thought about what kinds of programs and activities we will offer.