AUTISM 101: A Psychoeducational Intervention for Parents of Newly Diagnosed Children with Autism Spectrum Disorder

Maryam Moravvej-Farshi, MA Candidate, 2019

Applied Developmental and Educational Psychology
Lynch School of Education and Human Development, Boston College
LEND Fellow & Psychology Extern, Autism Spectrum Center, Boston Children’s Hospital

Issues Theoretical and Empirical Background

Lack of information and support at the time of diagnosis: Many of the Six common themes emerged in the literature examining the experience of parents of newly diagnosed children with ASD including: Pilot Evaluation
parents of children diagnosed with autism spectrum disorder (ASD) do not
1) Myths and non-scientific beliefs about autism: In contrast to other developmental disabilities such as Down syndrome, where there is an
receive adequate information, support, or advice about autism, services, or Autism 101 Parents Feedback Data from 34
established cause, in autism etiology is not yet understood. However, there are myths and lay beliefs about causation of autism such as
resources at the time of diagnosis. Therefore, parents often use the internet Surveys
“refrigerator mother” or vaccines which can result in parents’ self-blame, shame, and stigma and lead to isolation of the family and hesitation 30 27
as a source of information, but it contains much false information about Q1. This workshop
to get support. These pseudoscientific explanations result in implementing treatment strategies that are not evidence-based, such as 25 23
autism. Several studies report the need for educational and support groups
detoxification therapy, in an attempt to “cure” autism (McKenna Gulyn & Diaz-Asper, 2018). 20 was useful to me.
for parents and more access to professionals (Osborne & Reed, 2008;
15
Banach, Iudice, Conway, & Couse, 2010 ) 2) Stress and parental psychological wellbeing: Parents of autistic children experience higher level of stress compared to parents of their 11 Q2. The speaker(s)
10 7
neurotypical counterparts or children with other developmental disabilities (Hayes & Watson, 2013). High levels of parental stress can reduce presented the
System fragmentation: Autism services are split among medical, 5
material in a clear,
the effects of early intervention (Osborne, McHugh, Saunders, & Reed, 2007). 0 0 0 0 0 0
educational, and social systems. Navigating this fragmented constellation 0
concise way.
Strongly Agree Agree Neutral Disagree Strongly
often leads to confusion and frustration for families and may result in one 3) Navigating the system: Psychological wellbeing in mothers of autistic children is associated with their experience of fragmentation in Disagree
Q1 Q2
parent leaving the workforce. Single and low-SES parents are especially service system. Enhancing the continuity and coordination of services can lead to improved maternal psychological wellbeing and
vulnerable to losing their income, resulting in severe financial stress and consequently to enhanced child development and wellbeing (Hodgetts, McConnell, Zwaigenbaum, & Nicholas, 2017).
Q3. What did you like about this Q 4. Was there anything you
precarious living situations (Brewer, 2018). workshop?
4) Care coordination and medical home: Parents have voiced the need for a coordinator, between medical, educational, and social services would have changed or anything
that can facilitate communication between different agencies and service providers (Osborne & Reed, 2008). A well-resourced and family- you wish had been covered that
Autism 101: Program Description centered medical home can decrease the unmet needs of families of children with developmental disabilities and empower them to meet their Presenters Content was not?
child’s needs (McAllister et al., 2018). a. More convenient time
Autism 101 is a psychoeducational intervention through the Autism b. Split by age group
5) Self-efficacy and empowerment: Post-diagnosis support and education groups are associated with positive gains in parents’ self-efficacy
Spectrum Center at Boston Children’s Hospital that targets the parents of Presentation
and feelings of empowerment to influence the system and solve problems as they arise (Banach et al., 2010). Parents who report higher levels
children who are newly diagnosed with ASD. format
of self-efficacy, often take more active role in collaborating with their child’s service providers. Parents’ understanding of their child
This workshop provides information and support for the parents at the development and sense of self-efficacy are independent predictors of utilizing services to meet health and education needs of their autistic child
Q 5. Do you have any general feedback about the ASD workshop and/or ideas for
time of diagnosis with the goal of increasing their ability to develop a (Siller, Reyes, Hotez, Hutman, & Sigman, 2014).
future workshops?
plan of care for their child, enhancing their self-efficacy, and ability to
6) Advocacy: Advocacy can act as a coping strategy for parents of autistic children, giving them the sense of empowerment, agency, altruism, a. Provide a series of workshops (e.g. ABA, Floor time, Insurance, IEP, transition)
navigate the system and secure resources, and decreasing their stress. b. Provide more detailed information on therapies, school services, insurance, etc.
and control which can lead to positive mental health outcomes (Boshoff, Gibbs, Phillips, Wiles, & Porter, 2016).
The outcomes are getting high quality intervention and services for c. Offer more locations and time options.
autistic children and optimizing family’s functioning and quality of life.
Strengths:
Autism 101 for Parents of Children with New Diagnosis of ASD Recommendations and Future Directions
Autism 101 covers key issues about autism to help parents understand the
diagnosis and anticipate future needs. Recommendations for the program format and content:
Presenters (pediatrician / psychologist / a family educator) adjust Information about Information about Establishing a Causal conversation
Information about Information on the Offering the workshopTheory
at multiple of Change
times and locations so it would be
information based on participants questions and the age of the diagnosed available Services legal and insurance connection between and Q&A with a
autism etiology and next steps to be more accessible.
and resources in and issues around families and a pediatrician and/or a
child. symptomology taken by parents Offering workshops tailored to the age of the child would better meet
outside BCH autism resource specialist psychologist
Program is free of charge and free parking is available. the varied needs of the families of newly diagnosed children.
Limitations: Helping parents to process Empowering parents to Developing a series of workshops dedicated to each key issue that is
Assisting parents to
The participation rate is variable. the diagnosis and make decisions and Empowering parents to Supporting parents covered in the original workshop.
establish a medical home
information delivered by participate in their child advocate for their child emotionally
The intervention is just one, 90-minute session. for their child at BCH Recommendations for program evaluation:
the provider care
The time and place of the workshop is not convenient for many families. Developing a detailed and quantitative survey based on the themes
No childcare is available.
Increasing the ability of the Increasing the self-efficacy of emerged in the literature review and parents’ feedback.
Detailed, long term evaluation has not been conducted. Developing a second survey to be filled in three to six months at the
parents to anticipate next steps the parents to navigate the Decreasing parental stress
and develop a plan for care system and secure resources follow-up visit at BCH to evaluate the intermediary outcomes of the
program.
References Implementing a longitudinal study evaluating long-term outcomes of
Positive parental mental
Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents. Parents act as advocates and Efficient and productive care Intervention participation in Autism 101.
health and psychological
Social Work With Groups, 33(1), 69–83.
Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2016). Parents’ voices: ‘why and how we advocate’. A meta-synthesis of parents’
informed agents of change coordination Active Implication for research: Investigating what quality of life means for
wellbeing Ingredients
experiences of advocating for their child with autism spectrum disorder. Child: Care, Health and Development, 42(6), 784–797.
Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented system of professional care for autism. Social Science Interim
autistic individuals and their families and developing tools to measure
& Medicine, 215, 61–68. Mechanisms quality of life in this community.
Hayes, S. A., & Watson, S. L. (2013). The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress
Intermediary
in Parents of Children With and Without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642.
Hodgetts, S., McConnell, D., Zwaigenbaum, L., & Nicholas, D. (2017). The impact of autism services on mothers’ psychological wellbeing: Autistic children getting high quality Optimizing family’s functioning and Outcomes
Autism services and mothers’ wellbeing. Child: Care, Health and Development, 43(1), 18–30 Mechanisms
McAllister, W., McNally Keehn, B., Rodgers, O., Mpofu, M., Monahan, M., & Lock, M. (2018). Effects of a Care Coordination Intervention with interventions and services quality of life
Children with Neurodevelopmental Disabilities and Their Families. Journal of Developmental & Behavioral Pediatrics, 39(6), 471–480. Long-term Acknowledgment. Special thanks to Prof Morelli, Prof Hauser-Cram, Prof Bottema-Beutel,
McKenna Gulyn, L., & Diaz-Asper, C. (2018). Exploring Perceptions of Blame for Autism Spectrum Disorder. Journal of Developmental and Outcomes
Physical Disabilities, 30(5), 587–600.
Dr. Sullivan, Dr. Faja, Dr. Wilkinson, Dr. Solomon & Ms. Schweers, and ASD Family Advisory Council
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2007). Parenting Stress Reduces the Effectiveness of Early Teaching Interventions for Optimizing Developmental Outcomes of Autistic Individuals and Enhancing Their Quality of Life Ultimate Goal Dr. Helm, and Boston LEND program and everyone at Boston College and Boston Children’s Hospital
Autistic Spectrum Disorders. Journal of Autism and Developmental Disorders, 38(6), 1092.
Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12(3), 309–
who supported me through this project.
324.
Siller, M., Reyes, N., Hotez, E., Hutman, T., & Sigman, M. (2014). Longitudinal change in the use of services in autism spectrum disorder:
Understanding the role of child characteristics, family demographics, and parent cognitions. Autism, 18(4), 433–446.