Families often lack information about the autism diagnosis such as what to expect, treatment options, and how to access services. Support groups serve two main functions. They provide families and caregivers with much needed information on a variety of topics related to autism spectrum disorders (ASD). And, just as important, they provide interpersonal support so that parents and caregivers do not feel isolated and alone. Group support offers parents the knowledge, understanding and acceptance they seek (Banch, et al, 2009). YAI has been running an Autism Family Support Series since 2006. Over the years we have adapted our model based on lessons learned and feedback from parents.
Impact on Families
Families caring for a child on the autism spectrum confront a variety of issues and concerns, including managing aggressive and self-injurious behaviors, selecting an appropriate educational placement, wondering what happens after graduation and managing caregiver stress.
The emotions of having a child with autism vary and are very personal for each family member. There may be grief over the diagnosis and mourning for not having a typical child. Families might feel anger and wonder, “Why did this happen to me?” Parents report feelings of shame and embarrassment over the child’s behaviors and uncertainty about how to respond. These emotions can cause families to feel different and distanced from others. Research indicates that caregivers who participate in support groups feel increased competence, knowledge and empowerment in regards to meeting the needs of their family member with autism (Banch, et al, 2009). Support groups provide an environment where parents can talk openly and honestly about their concerns.
A Model of Information and Support
The format of YAI’s support groups has evolved over the years into a model that combines information and support. The structure entails a 60-to-90-minute presentation on a topic of interest, followed by an hour of peer support. The peer support helps families to process the information they have received, share personal experiences and discuss how they can integrate new strategies in caring for their family member.
The support group runs year-round, with about one group a week. Consistency is important, as parents come to rely on the groups as an outlet to express their feelings and receive support. Some only attend a group that is relevant to them, while others participate in as many sessions as they can, regardless of the age of their family member, because they benefit from the information and support.
Developing Relevant Topics
Support group topics are based on feedback attendees provide either during sessions or on evaluation forms. Sometimes, presentations are selected in response to current and timely issues, such as the upcoming DSM changes and New York state’s People First Waiver. Other “hot topics,” ranging from genetic research to toilet training, are selected by surveying staff and families to determine needs.
Some frequently requested topics that attract the largest parent turnout are: Special education issues, guardianship/future planning, use of psychotropic medication, sensory integration strategies, social skills, behavior management, stress management, and sexuality. It’s also helpful to schedule an “open topic” to allow families to discuss any pressing issues, thoughts or concerns in place of a formal presentation.
Be creative and resourceful in finding speakers to present on issues which will be useful to families. In addition to having YAI staff present, we also turn to individuals from other organizations who are experts in certain areas. Any time there is a parent of a child with autism who has an area of expertise that is relevant, use her or him as a resource for the support group.
Tips for Successful Groups
Outreach can be widespread or targeted. Mailings, email blasts and websites are good ways to spread the word about the group. Clinicians and other providers should consider support groups as part of the system of care available to families and provide referrals (Mandell and Salzer, 2007). Schools, service coordinators, provider agencies, libraries and other community resources are good vehicles for flyer distribution. Keep an updated database of family members who attend.
Participation in the YAI support group has been bolstered by the fact that it is open to families from all boroughs, and there is no charge. Pre-registration helps to ensure adequate space and materials for all who attend. The attendance ranges from five to 40 families, but the average is around 10 families. Parents represent a diverse mix of families from all over the metro New York area. Caregivers come from different cultures, ethnicities and socio-economic backgrounds. Although the majority of attendees tend to be mothers, there are several fathers who attend regularly. The common denominator of autism brings everyone together and creates a space for people to support one another regardless of background.
New York is a melting pot of different cultures and languages. Groups should be available in English, Spanish, Chinese dialects and other languages whenever possible. It is so valuable for families to get information and support in their own language to increase their knowledge and create peer networks.
Maintaining a Supportive Environment
Family members who have “been there” and who share similar experiences can provide support and critical information about how and where to obtain services and, in some cases, can come together to advocate for needed resources and services (Mandell, and Salzer, 2007). Family members with more experience navigating the system benefit from sharing their experiences with parents who are new to the autism diagnosis. Parents still adjusting to the diagnosis are relieved to know that they are not alone.
Each support group is facilitated by two social workers or mental health clinicians. Their roles are multi faceted. They make families feel welcome, comfortable and supported. They keep the speaker on track and answer any questions about resources available in the community. The facilitators ensure that each parent who wants to speak gets a chance to be heard. Support groups are a safe place for parents and caregivers to discuss challenging issues, feelings or emotions related to caring for a child or adult with autism.
It is imperative to keep the support groups closed to outside professionals and strictly open to parents and caregivers. Parents need a place to express their fears and feelings in a safe, supportive environment with their peers. The dynamics change when professionals are in the room.
Feedback Critical to Group’s Future
Feedback from attendees is crucial to evolving the program and ensuring that it is meeting everyone’s needs. Feedback is best when it is timely, so collecting it at the end of each session is ideal. Assessment of the group should be an ongoing process. Feedback often conveys what topics parents want to hear, what changes should be implemented and what the challenges might be for some attendees. Evaluation data can also be used to access funding sources for your group.
As the prevalence of autism rises, more and more families will be seeking opportunities and venues to receive information and support. Autism support groups provide a much needed service for families and caregivers. This model can be replicated in other communities as the need for support groups grows.
Kate Macaluso is a supervisor of YAI LINK, an information and referral department, and a mental health clinician at the YAI Center for Specialty Therapy. She has over 15 years of experience working with individuals with autism and developmental disabilities and is well versed in the issues that impact families raising a child with autism, as well as the resources available to support families. For the past five years she has been involved in managing and facilitating YAI’s Family Support Series for Caregivers of Individuals with Autism Spectrum Disorders.