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Parenting

Finding Strength and Support: The Importance of Autism Parent Support Groups

Updated
July 23, 2024
Table of Contents

    Autism Spectrum Disorder (ASD) is a common neurological and developmental disorder. Formerly separated into differing diagnoses under the category of Autism Spectrum Disorders, ASD is now a diagnosis of its own. So, those who may have been diagnosed with "Autistic Disorder" or "Asperger Syndrome" in the past are now considered to have ASD. Marked by social and communication differences and patterns of restricted interests and repetitive behavior, such as sensory issues, difficulty with change, repetitive body movements, and special interests, ASD is a complex condition that varies extensively from person to person.

    Parents of kids with ASD may run into difficulties such as navigating the school system, getting early intervention and support services, or finding other caregivers and families they can relate to. If your child has ASD, finding an Autism support group for parents or getting involved in your local Autism community may be helpful in navigating these challenges. Meeting other parents of kids with ASD means that you can share information regarding resources, support each other emotionally, and bond over shared experiences.

    This article will cover the benefits of parent support groups, types of support and social groups, how to find the right Autism support group for you, and tips for making the most out of your experience.

    Benefits of Autism Parent Support Groups

    Support groups give people a sense of connection and can help you feel less alone. What are the other benefits? Here are four advantages of finding an ASD-specific support group for parents.

    Emotional support and shared experience

    Peer support and understanding are two of the most common reasons parents of special needs kids seek community in the form of a support group. These groups are a safe space to discuss what you're going through, your stressors or fears, and your victories.

    Access to resources and information about Autism and available services

    What if you have trouble finding therapy options and other resources? One of the top benefits of being part of any group or community for parents of kids with ASD is that you can share resources with one another. These may include but aren't limited to:

    • Education regarding ASD as a condition.
    • How to navigate advocacy at a child's school (e.g., getting an IEP).
    • How to navigate financial challenges (e.g., applying for SSI for a child).
    • Diagnostic resources (for kids without an official diagnosis).
    • Therapy options or parenting strategies.

    Especially if your child is in the process of getting a diagnosis or was diagnosed recently, it can be overwhelming to do all of the things you need to do and find all of the resources your child needs. Having an experienced community to go to can make a world of difference and is highly encouraged.

    Opportunities for networking and building relationships with other parents

    Support groups and social groups give parents an opportunity to make new friends. Positive social relationships have a number of physical and mental health benefits, including stress relief. Getting involved in the Autism community can be a source of empowerment for parents, and you may be surprised by how much better you feel upon building relationships with other families who truly understand.

    Validation and reassurance in difficult times

    All parents and caregivers experience difficult times, but when a child has ASD, you might encounter specific challenges. For example, education and school-related issues or how to navigate specific symptoms your child experiences. Parents in support groups can encourage one another, share self-care and coping strategies, and validate or reassure one another during hard times.

    Types of Autism Parent Support Groups

    There are different types of support groups for parents of kids with ASD. Each type of support group has unique benefits. For example, while an online support group has the benefit of accessibility, a local support group might help you learn about resources specific to your area. Many parents benefit from joining more than one type of support group.

    Online support groups and forums

    Online support groups and forums can be more easily accessible than in-person groups in some cases. Forums and Facebook groups let you post and talk with other parents whenever you want to, so you don't have to worry about making it to a specific meeting time. Online support group meetings take place at specific times but allow you to connect via video chat rather than traveling to an in-person location.

    Joon's Free Facebook Group

    Joon has a free parent support group on Facebook called the Joon ADHD Parent Support Group. Despite the name, we welcome all parents who may benefit from the group. The Joon app is geared toward families of kids with ADHD, ASD, ODD, and related conditions. However, any family can use it. Your child doesn't have to have a formal diagnosis for you to join the group (or use our app), and we have found that it is a great place for parents to bond over shared experiences and support one another.

    Parents Helping Parents

    Parents Helping Parents (PHP) has a virtual Autism support group for parents of school-aged kids that meets on the first Tuesday of each month. The Autism parent support group is just one PHP group you might be interested in. Other PHP groups parents of kids with ASD may find beneficial include but aren't limited to:

    PHP also offers groups for parents of adults with special needs, including developmental disorders. These include the Parents of Adult Children with Developmental Disabilities group and the Paths for Positive Adulting group.

    Reddit and other forums

    Online forums and Reddit groups such as the Autism Parenting subreddit can be helpful for parents who aren't on Facebook, want to remain anonymous, or need additional support.

    Local in-person support groups

    You can find local in-person support groups for parents of children with ASD in several different ways. Psychology Today's search tool is one way to locate parent support groups in your area and some other Autism services (e.g., therapy). To search for support groups on the Psychology Today website, select "Support Groups" where it says "Find a Therapist" on the home page and type in your city or zip code.

    Check to confirm that the support group takes place in person, and if so, the location of the group. Some of the support groups you find on Psychology Today will meet virtually, so this is also a way to find an online family support group for those local to your area.

    National organizations and advocacy groups

    The Autism Society has affiliates across the United States. These affiliates regularly hold walks, parent support groups, support groups for autistic adults, and other events, such as friendship groups for children with ASD. Find your local affiliate of the Autism Society here. Then, go to your local affiliate's website to find out about groups and upcoming events in your area.

    The National Autism Association (NAA), Autism Speaks, and The Color of Autism Foundation (for communities of color) are three other organizations that can help out in your search for support groups, education, advocacy, and other resources.

    Parent-led support groups within schools or therapy centers

    Many of the support groups you'll find through Psychology Today will take place at mental health or ASD-specific therapy centers, but not all of them will. Support groups aren't the same as group therapy and can be started or held by anyone, including parents. Contact your local school, school district, or ASD resource center to ask about parent-led groups near you.

    How to Find and Join a Support Group

    How do you find the right Autism support group for you? Here are some tips.

    • Research and explore different options. Depending on where you live, there might be a lot of support group options. While this is a good thing, it can be overwhelming. Research the groups you're interested in to learn more about them and decide which ones interest you most.
    • Attend a meeting or event to get a feel for the group before committing. If you're nervous about attending a support or social group for the first time, remember that it doesn't need to be a long-term commitment.
    • Ask for recommendations from healthcare providers, educators, or other parents. If you can't find the kind of group you're looking for, ask your child's healthcare provider, school staff, or other parents. For example, if you're part of a local Facebook group for parents of kids with ASD, you might make a post asking about support group options.
    • Consider starting your own support group if one doesn't already exist in your area. Although some areas are rich with options, others may not have what you're looking for. In this case, you can start an online or in-person support group, social group, page, or forum of your own.

    Remember: ASD is a common neurological and developmental disorder, affecting about 1 in 36 kids. Even if you feel alone right now, it doesn't have to stay that way, and a support group can help.

    Tips for Making the Most of a Support Group Experience

    Regardless of if it's in-person or online, here are some ways to make the most out of your experience with any support group:

    • Be open and honest. Ideally, a support group will be a judgment-free place to get things off of your chest. In opening up about your experiences and feelings, you will find that other parents have gone through the same things. For example, if you make a post that says, "My daughter won't go outside. What can I do?" you may be surprised to find that many other parents have had the same experience. 
    • Listen actively and offer support to others. Pay it forward by showing other parents compassion, empathy, and understanding when they share their experiences and feelings.
    • Take advantage of resources and information shared within the group. Word of mouth can be one of the best ways to find the resources you're looking for.
    • Maintain boundaries and respect the privacy of other members. For example, don't share or screenshot posts from other members of an online group without asking. All support groups have their own rules. You must understand the rules of the group(s) you're in and follow them to respect other members' privacy.

    Support groups can contain a wealth of information, guidance, encouragement, and social connection. Don't feel discouraged if the first group you find isn't the right match. Trying out multiple groups can help you find the right fit.

    Conclusion

    Autism Spectrum Disorder (ASD) is a widespread neurological and developmental disorder. While awareness and acceptance surrounding ASD are growing, it can be tough to find resources, education, or other parents and families who understand your daily life. Inclusion in a support group can be a game-changer, taking parents from a place where they feel lost or frustrated to one where they feel confident and supported. With online and face-to-face Autism support group options, no parent or family has to navigate ASD alone.

    About

    Dr. Joe Raiker, PhD

    Joe Raiker, PhD, is a licensed clinical psychologist who has extensive training and clinical experience in the principles of behavior modification and cognitive restructuring (i.e., CBT). He provides assessment and psychotherapeutic services to patients of all ages, primarily via Telehealth, including treatment for attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), anxiety disorders, mood disorders, and post-traumatic stress disorder. In addition to seeing patients, Dr. Raiker also provides Clinical Supervision for Therapy and Assessment Services at South Florida Integrative Medicine.

    About

    Dr. Joe Raiker, PhD

    Joe Raiker, PhD, is a licensed clinical psychologist who has extensive training and clinical experience in the principles of behavior modification and cognitive restructuring (i.e., CBT). He provides assessment and psychotherapeutic services to patients of all ages, primarily via Telehealth, including treatment for attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), anxiety disorders, mood disorders, and post-traumatic stress disorder. In addition to seeing patients, Dr. Raiker also provides Clinical Supervision for Therapy and Assessment Services at South Florida Integrative Medicine.