The co-author of our newest ATN/AIR-P tool kit describes the tremendous need that inspired its creation by a dedicated group of ATN parents and autism specialists
By Kameena Ballard-Dawkins, an Autism Speaks Autism Treatment Network (ATN) family representative at Children’s Hospital of Los Angeles. The hospital is one of 14 ATN sites across the United States and Canada. Ballard-Dawkins is among the co-authors of the just published ATN/AIR-P Puberty and Adolescence Resource, a tool kit for parents of adolescents with autism.
Download the Puberty and Adolescence Resource, free of charge, here.
Having a pre-teen daughter with autism left me with lots of questions about how to prepare her for puberty and the changes it entails. I worried about her ability to take care of herself during menstruation. How would I explain to her the mood and behavioral changes that often come with puberty?
My self-guided research on navigating this crucial time became overwhelming. At the same time, I realized that the changes could begin any day. And I knew other parents of tweens with autism who felt just as stuck as I did. We were all searching for answers.
Fortunately, I’m a family representative at our Autism Speaks Autism Treatment Network (ATN) site here at the Children's Hospital of Los Angeles. This gave me the opportunity to raise our need for guidance with the ATN’s Behavioral Science Committee.
They agreed that puberty and adolescence is a particularly important and often difficult time for families with children affected by autism. We agreed to find ways to provide guidance.
With input from the national ATN leadership, we agreed that puberty and adolescence would be a wonderful topic for the ATN/AIR-P series of tool kits for families and professionals. These tool kits are made possible by the ATN’s role as the federally funded Autism Intervention Research Network for Physical Health (AIR-P).
Learn more about all of Autism Speaks’ ATN/AIR-P tool kits and download them free of charge, here.
I agreed to co-lead the working group that would develop this comprehensive tool kit. Our aim, we agreed, was empowering parents (like me!) with the knowledge and strategies to help their children understand what’s happening with their bodies and how to handle their new feelings.
We knew our guidance had to be suitable for children and teens across the autism spectrum – including those who are nonverbal.
Through a series of conference calls, our “Puberty Workgroup” used the ATN’s family-centered care model to accomplish our goals. This model promotes the strength and knowledge of parents and other caregivers in their role as expert partners in their children’s healthcare.
Medical experts and parents unite to great an important resource
The ATN medical experts on our team included pediatrician Kristin Sohl, medical director of the University of Missouri Thompson Center for Autism and Neurodevelopmental Disorders; neuropsychologist Lisa Nowinski, of the Lurie Center for Autism at Massachusetts General Hospital; and psychologist Shawn Reynolds and occupational therapist Yolan Parrott, both with Glenrose Rehabilitation Hospital, in Edmonton, Alberta.
Joining me as a family representative were ATN Family Advisory Committee members Amy Kelly, of Children’s Hospital of Philadelphia; Charlene Prochnau, of the University of Glenrose at Edmonton in Alberta, Canada; Alicia Curran, of the University of Missouri Thompson Center; and Rich Hahn, of Des Moines, Iowa. They each contributed wonderful vignettes about their children on the spectrum and helped ensure the tool kit’s had a family perspective.
The tool kit includes sections on such important topics as “Body Changes,” “Self Hygiene” and “Public versus Private” behavior. It also addresses gender-specific issues such as menstruation and wet dreams.
Sample scripts and visual aids
These sections include suggested scripts to guide discussions and visual aids (some of which were provided to us from Vanderbilt Kennedy Center’s Healthy Bodies tool as seen above) that parents can use during such talks. We likewise have visual aids that healthcare providers will find useful for adolescent patients who have autism.
We have another section on “How can Occupational Therapy Help during Puberty.” This includes a chart of goals and strategies created by occupational therapist Alison Wheeland, who did her predoctoral internship at Autism Speaks. (This section also gives an advance peak at another Autism Speaks tool kit in the works: Occupational Therapy across the Lifespan: an Autism Speaks Family Services Tool Kit.)
Our workgroup also received feedback on the tool kit from occupational therapy students studying adolescent development at the University of Southern California. With the guidance of their clinical instructor and occupational therapy doctor Tessa Milman, they helped us develop a teen-friendly “voice” for this tool kit – a voice that we think today’s adolescents will find relatable.
We received additional feedback from the Autism Parent Advisory Board members at the Children's Hospital of Los Angeles’ Boone Fetter Clinic and its nurse care manager Kathryn Smith. They helped us make sure that the tool kit’s guidance was in terms easily understood by parents and other caregivers.
Working with such an inspiring team of professionals, parents, caregivers, students and even siblings, we believe that we’ve developed an exceptionally helpful and easy-to-use guide – full of information, practical tips and visuals.
Testing this tool kit at home
After reading the finished product, I can proudly say that it gave me some great ideas. I particularly value how it helps me choose the right words to explain what puberty might look like and feel like for my preteen daughter. This tool kit has really worked for my family! We’re now ready to share it with the broader autism community.
We believe this tool kit is a fine example of parents and professionals working together to improve quality of life and health care for children and teens with autism. Through our partnership, we reinforced the importance of whole care for the whole family and pf ensuring that the voice of the family remains central to the ATN mission.
The Autism Speaks ATN provides a great opportunity to collaborate with an interdisciplinary network of autism professionals and with parents – the real autism experts. Together we achieve excellence in serving the autism community.
We are proud of the tool kit and the family-centered, inter-professional team that saw this important project to completion. And now we are eager for your feedback. Please check out our puberty tool kits email us with your comments at ATN@autismspeaks.org.