Autism support groups emerged in the 1960s and 1970s as parents began advocating for more services and research for autism spectrum disorder. At the time, autism was poorly understood and many children were institutionalized or misdiagnosed.
In 1965, psychologist Bernard Rimland founded the Autism Society of America, one of the first national autism advocacy and support organizations. Throughout the 1970s, local chapters and support groups sprang up around the U.S. led by parents seeking advice, resources, and community for raising their children with autism. Parent groups enabled families to share their experiences, exchange information, and provide mutual aid.
Support groups expanded significantly after autism was first added as a diagnostic category in the DSM-III in 1980. New research led to greater awareness and understanding of autism, though services and support remained limited. To access better resources and treatments for their children, parents formed non-profit organizations, networked with each other, and advocated for policy changes.
From the 1980s to the early 2000s, the number and scope of autism support groups grew steadily. Groups focused on different age ranges, needs, and geographic regions. With the internet age, online support groups and social media enabled broader connections. Today, autism support groups play a vital role in providing information, resources, and peer support for individuals and families affected by autism worldwide.
Benefits of Autism Support Groups
Joining an autism support group can provide numerous benefits for both individuals with autism spectrum disorder (ASD) and their caregivers. Support groups help reduce feelings of isolation, provide a judgment-free space to share experiences, and allow access to valuable information and resources.
Some of the key benefits that autism support groups offer include:
- Reducing isolation – Having a child with autism can often feel isolating. Connecting with other parents and families facing similar challenges helps caregivers feel less alone. For individuals with autism, support groups provide social opportunities to interact with peers who share common experiences.
- Sharing experiences – Support groups allow members to share personal stories, struggles, and successes. Hearing how others cope and work through issues provides reassurance and inspiration. The shared experiences help create a sense of community and validation.
- Accessing information – Groups offer the chance to exchange valuable practical information and resources. Experienced members will recommend therapists, social skills programs, legal help, and more based on first-hand knowledge. Support groups point families toward helpful services and assistance.
- Finding emotional support – Raising a child with autism brings ups and downs. Support groups allow a safe space to discuss emotional challenges, from grieving a diagnosis to managing anxiety over the future. Connecting with empathetic listeners brings stress relief and comfort during difficult times.
- Advocating together – Groups provide a collective voice to advocate for children’s needs. Families can join together to campaign for improved educational services, healthcare coverage, funding for therapies, and more supportive public policies.
By reducing isolation, sharing experiences, providing helpful resources, offering emotional support, and advocating collectively, autism support groups deliver significant benefits for individuals and families coping with ASD. The shared understanding and guidance they provide help make the challenges of autism a little easier to manage.
Types of Autism Support Groups
There are many different types of autism support groups available to meet various needs. Some key categories include:
Local In-Person Groups
- Local support groups that meet in person are a great option for connecting with other families in your geographic area. These groups often meet at community centers, libraries, churches, or other public spaces. They provide a chance to talk face-to-face and build community.
- In-person groups may be general autism support focused or target specific demographics like parents of newly diagnosed kids, teens, adults, etc. Check local listings to find options in your city or town.
National Autism Organizations
- Many national autism organizations like Autism Speaks host both local in-person meetups and online support communities. They provide structured programs and resources beyond just peer support.
- Groups affiliated with these large nonprofits tend to be well-organized. However, some criticize them as promoting narrow perspectives on autism.
Online Forums and Social Media Groups
- Facebook groups, subreddits, discord servers, and forums enable connecting with a broader community online. These provide support outside of formal in-person meetings.
- Online groups can connect families facing similar challenges regardless of location. The anonymity of online interactions may encourage more open sharing.
- The downsides are a lack of in-person contact and the potential for misinformation without expert moderation.
Groups for Parents, Adults, Siblings
- Support groups can target specific family members like parents of autistic kids, autistic teens/adults, or siblings of autistic children.
- Groups with a narrow focus often provide the deepest level of understanding and support for those members’ unique needs.
- Seeking multiple groups that fit different needs within a family can provide specialized support.
Finding a Support Group
Finding the right autism support group that meets your needs and preferences can take some research. Here are some tips for locating and evaluating potential groups to join:
1. Check Local Resources
Your local autism society chapter, advocacy organizations, clinics, or community centers are good places to start. Many maintain lists of local support groups and can help match you with one. Some organizations like Autism Speaks have search tools on their websites to find groups.
2. Search Online Directories
National organizations like the Autism Society maintain directories of local chapters across different cities and states. Search online to find the chapter closest to you. You can also search directly on platforms like Meetup and Facebook to find autism support groups near you.
3. Define Your Priorities
Consider your priorities and needs in a support group. This can help narrow your search. Important factors may include location/accessibility, type of support provided, participants’ age groups, meeting frequency, size of group, dues/costs, and facilitation style.
4. Attend a Meeting
If possible, attend a meeting before fully committing to a group to see if it’s a good fit. The culture and approach can vary greatly between groups. Visiting multiple groups can help you determine the best match based on your comfort level, connection with other members, and how much you gained from attending.
5. Ask Questions
Don’t hesitate to ask questions of group organizers or members before participating. Inquire about the meeting format, types of support provided, how formal or informal conversations are, and the general participant demographics to assess fit. Also, ask about any costs associated with joining.
Finding the right support group takes effort, but it’s worth it. The best groups align well with your needs and provide a valuable sense of community. With some targeted searching and visits, you can find a group that meets your expectations.
Participating in a Group
Attending an autism support group for the first time can feel intimidating, but there are things you can do to get the most out of the experience. Here are some tips for participating in a productive and meaningful way:
Prepare yourself mentally
Before attending your first meeting, take some time to think about what you hope to gain. Are you looking for emotional support? Practical advice? The chance to meet other parents? Getting clear on your intentions can help you stay focused during the meeting. Also, acknowledge any hesitations holding you back so you can address them.
Listen more than you speak
The first few meetings, focus more on listening than sharing. Pay close attention to the format, topics discussed, and group dynamics. Listening will help you learn what type of contributions will be most meaningful.
Find a role
As you become comfortable, look for ways to play a role. Offer insight from your experience when appropriate. Ask thoughtful questions to spur discussion. Volunteer for tasks to help the group. Find small but meaningful ways to contribute.
Make connections
A key benefit of in-person support groups is personal connection. Introduce yourself to members. Share contact information with those you bond with. Arrange to meet up outside the group. Building relationships can provide support beyond just the meetings.
Stay positive
While sharing frustrations is reasonable, try to keep discussions focused on the positive. Provide encouragement, be understanding of different perspectives, and offer advice when asked. Maintaining a positive mindset makes the group helpful for everyone.
Participating meaningfully in an autism support group takes some effort, but it pays off through the valuable mutual support these groups can provide. Following these tips will help you become an active member.
Online Support Options
The internet has opened up new possibilities for connecting with others in the autism community. Online support groups allow people to come together even when geographic limitations or other obstacles prevent them from attending in-person meetings.
For those looking to participate in an online autism support community, there are a few popular options:
- Autism forums – Sites like WrongPlanet and Autism Forums host active discussion boards where members can start threads, reply to others, and chat about topics relating to autism. These provide a sense of community and support.
- Facebook groups – Facebook has numerous autism support groups that members can join to connect with others. Some are general groups while others focus on specific topics like autism parenting or adults on the spectrum. These private groups allow for sharing personal experiences and advice.
- Subreddits – The autism community on Reddit connects through subreddits like r/autism and r/Aspergers. Users can pose questions, share stories, and discuss news relating to autism.
- Discord servers – Some autistic communities convene real-time chats on Discord servers. These invite-only spaces allow for casual conversations among members. Voice channels also enable talking rather than solely relying on text.
- Online mentorship programs – Organizations like AANE facilitate one-on-one peer mentorship between autistic adults. Matching mentors and mentees enables personalized support and guidance.
The flexibility and anonymity of online groups help include those who may feel uncomfortable or unable to participate in in-person meetings. With abundant options, people on the autism spectrum can find their niche community and connect with supportive peers from the comfort of home.
Supporting Family Members
Participating in an autism support group can provide benefits for the entire family. Parents, siblings, grandparents, and other relatives can gain a greater understanding of autism through connecting with others going through similar experiences.
Support groups allow family members to share their stories and struggles in an empathetic environment. Other parents and relatives can offer validation and advice based on their own experiences raising or supporting a child with autism. This helps reduce feelings of isolation and builds a sense of community.
Through groups, families can learn new techniques and strategies from one another on how to support their child or sibling with autism. This includes tips on communication, behavior management, accessing services, self-care, and more. Support groups give families the tools to better meet their child’s needs.
Siblings of autistic children can also benefit from support groups, especially teen and young adult groups. These provide a space to talk about common challenges like difficulties with social relationships or anxiety over the future. Support groups help siblings feel heard and know they are not alone in their complex feelings.
Support groups encourage families to practice self-care and look after their mental health. The groups provide a much-needed break and opportunities to bond with other adults going through similar journeys. This time spent recharging allows families to be more patient and engaged.
Criticisms of Support Groups
Some people have concerns about autism support groups or are cautious about joining them. One criticism is that misinformation can spread in these groups if people share anecdotes or try unproven treatments. While support groups can provide a platform to discuss different options, members should be wary of claims that lack scientific evidence. Group leaders can help by referring members to trusted sources like Autism Speaks for accurate information.
Another concern is that enabling harmful behaviors may occur if group members reinforce problematic actions. There is a risk that well-meaning members of a support group could provide sympathy but not solutions. However, most support groups aim to share constructive advice and want to help members improve their situations. Support group leaders can prevent enabling by redirecting conversations in a positive direction. Participants should also be mindful not to accept excuses for harmful behaviors.
While no group is perfect, the benefits of having a compassionate community tend to outweigh the potential downsides. Support groups provide an invaluable resource for many families managing autism. Any risks can often be mitigated by choosing an established organization, consulting doctors for advice, and being an engaged, thoughtful participant. Most parents find that shared experiences and camaraderie lead to better coping skills, reduced isolation, and new friendships.
Conclusion
Autism support groups play an invaluable role in connecting individuals and families impacted by autism spectrum disorder (ASD). As we’ve explored, these groups offer numerous benefits such as reducing isolation, sharing information and resources, and providing emotional support. Support groups create a judgment-free space to openly discuss challenges, successes, and the day-to-day experiences of living with autism.
The types of support groups available are diverse, ranging from local in-person meetups to large national organizations to online communities. This variety means that most people can find a group that meets their needs, whether that’s connecting with other parents, finding social opportunities for adults with autism, or accessing professional advice. While support groups have limitations and aren’t right for everyone, they can make a profound difference for many in the autism community.
If you or a loved one is on the autism spectrum, I encourage you to seek out a support group in your area or online. Attend a meeting, share your story, ask questions, and make connections. You may be surprised by how empowered and uplifted you feel. Support groups can provide knowledge, empathy, and solidarity during the challenges of autism. Don’t struggle alone when there is an entire community ready to embrace you.
