Valentine Group Health
Margaret C. Souders PhD CRNP
Assistant Professor, University of Pennsylvania
Pediatric Nurse Practitioner
Clinical Genetics Center
Center for Autism Research
The Children’s Hospital of Philadelphia
Background:
I am committed to the profession of nursing and the generation of evidence to guide clinical practice. As a board certified pediatric nurse practitioner in the Biobehavioral Unit and the Regional Autism Center at Children’s Hospital of Philadelphia (CHOP), I have provided care for children with autism spectrum disorders (ASD) and their families for 18 years. Individuals with ASD vary in the degree to which they exhibit the core features of the disorder. I have educated families about the core deficits of ASD specific to their child and have tailored their recommendations to optimize each child’s functional and behavioral outcomes.
As a member of an interdisciplinary team in the Biobehavioral Unit, I have been trained in applied behavioral analysis techniques and have guided families on the type and intensity of the behavioral program most appropriate for their child’s needs. I have developed excellent clinical and differential diagnostic skills under the mentorship of Dr. Susan E. Levy, Medical Director of the Regional Autism Center at CHOP. I was trained in 2001 to perform diagnostic evaluations in children with ASD and have conducted developmental testing with more than 500 children. In addition, I have advanced training in the use of psychotropic medications in children with ASD with severe maladaptive behaviors and have collaboratively practiced with pediatric psychiatrists and developmental pediatricians for the past decade.
At the present time, I am an Assistant Professor in the School of Nursing at the University of Pennsylvania. My mission is to develop new knowledge that can be can be used by clinicians and researchers to improve their understanding of the underlying mechanisms of insomnia and develop targeted interventions to promote sleep in this vulnerable population. Chronic, severe insomnia is one of the most common medical conditions among children with ASD.
The prevalence of chronic insomnia among children with ASD is 60-80%, a two-three fold increase over typically developing (TD) children. Chronic insomnia has detrimental effects on cognitive development, behavior and mood. Moreover, disruptive sleep in children with ASD has been shown to severely alter the quality of the sleep of parents, who report great stress as a result. In addition, I have has observed that chronic insomnia may impede the benefits of the intensive and costly daytime interventions children with ASD receive. In response, I have has worked diligently at trying to improve the sleep of children with ASD using behavioral, alternative modalities and pharmacological interventions. However, very little data exist on effective treatments of insomnia in children with ASD.
We have collaborated with the Center for Sleep at CHOP and have been struggling to improve the sleep of children with ASD on a trial and error basis. We acknowledge that the substantial heterogeneity of ASD makes choosing the most appropriate intervention to promote sleep very difficult. Moreover, behavioral and medication trials are time consuming and draining for families; choosing the most appropriate one based on each child’s individual characteristics and family needs is critical.
Overview:
This program is an overview of how one nurse, Dr Margaret Souders, one day took an assignment to fill in for a short staffed unit and found to her amazement, a whole new world she did not know existed with children who have severe autism. Through her journey of professional self discovery, she found that there were several cardinal professional milestones that contributed to her making her work with these children and their families the professional commitment that makes going to work every day both meaningful and rewarding for her.
Margaret’s story is inspiring to other professionals as well as to families who have a lifetime of investment in helping their child to cope. Knowing there are dedicated individuals like Margaret serves as a reminder that the journey with a severely affected child does not have to be one that is traveled alone. She also encourages other professionals to consider this as a field to explore.
Her advice to others looking for their professional pathway;
- Find your passion and maintaining compassion. Caring for children with autism requires compassion, dedication and high levels of energy.
- Marry your strengths with your work life-For example, Margaret recognized that working with children and families draws from her strengths that align with advocacy how to help people have a voice as she recognizes she has a strong voice and she could use it to help others.
- Experience the Joy of being well trained and effective. In working with autistic families, it requires the ability to be completely in the moment, and able to focus on the present and their circumstances. Margaret recognized that she was “happy in the moment” of helping people in these difficult situations.
3 Key Points:
Advice for others who want to work with autistic children and their families:
- Self reflection. Have confidence that even if you are in a difficult situation, just jump in and be willing to try something. You are more trained than you think.
- Identifying an opportunity. You can make a difference and don’t be afraid to take some risks
- Implementation teaches you how to start. Learn from experience. Education is important but you don’t need a course to begin working with autistic children.
