Raising an autistic child is often quite challenging and can at times make you feel frustrated, isolated, and helpless. You may not know anyone else who is in the same boat, and it might feel too difficult to talk about it with friends whose kids are “normal” and not having similar difficulties. Even after you’ve gotten a diagnosis from a professional, you may have questions about handling your situation that the psychologist can’t help with.
According to Stanford Children's Health, parents of a child on the spectrum must have a good support system in place. This will help your child cope with the unique aspects of his or her autism. It will also help you learn how to manage your feelings when faced with the challenges of raising a child with ASD and pay special attention to the needs of other children in the family. Sometimes siblings' needs get lost when so much attention is needed by the child with ASD.
Part of this support will come from the healthcare team that is assisting your child and educating you as a parent - but not all the support you may need.
Your Extended Family
Your extended family and friends can be key parts of your informal support network. Support from family and friends is good for you, your child and the rest of your family. The best way to build this support network is to help family and friends learn about what autism means for your child and your family. This is especially important in the early days after diagnosis.
Extended family and friends might respond in various ways to your autistic child’s diagnosis and behaviour. Some might be ready to support you and your child straight away. Others might take a bit longer to understand how they can help.
Grandparents and autistic children: a special relationship
When a child gets an autism diagnosis, the effects on grandparents are likely to be similar to those on parents.
Some grandparents might be surprised or confused at first. They might also feel worried for the whole family. For example, they might worry about their grandchild’s future, the demands on the child’s parents, or the wellbeing of other children in the family.
But never underestimate grandparents' resilience, as well as their unconditional love and support for their families.
(read more about getting your extended family involved in this guide by the Raising children Network)
Autism Support Groups
According to Autism Spectrum News, 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.
The Role of Support Groups
Support groups enable parents to share information with one another, such as information about therapies or new programs, stories and experiences of living with autism, and advice on how to deal with different professionals. They also allow parents to vent their frustrations and have their feelings validated and understood.
Participating in autism support groups helps parents positively deal with negative emotions and feel less distant from other parents. These groups not only increase awareness, but also create an environment where parents and caregivers can connect with families going through similar problems.
Types of Autism Support Groups
There are different types of autism support groups that cater to specific needs and provide different kinds of support.
1. Peer-Led Groups
Peer-led support groups are run by parents and caregivers of children with autism or by those who have autism themselves. These parent support groups are more informal and less structured. They offer a wide range of perspectives and give a sense of understanding and empathy that may be difficult to find in a group led by a professional.
2. Professional-Led Groups
Professional-led groups or organizations are strictly run by professionals like doctors, therapists, counselors, teachers, and volunteers that are specially trained to work with children with autism and their families. The groups generally have a specific focus or structure and are led by people who have a distinctive background or training.
3. Whole-Family Support Groups
Family support groups create a forum for entire families with the aim of connecting people and creating awareness about autism. Similar to peer-led groups, here family members share information as well as suggestions to meet the daily challenges of caring for a loved one with autism.
4. Educational Support Groups
The goal of educational support autism groups is to share valuable information on autism and the latest developments on therapies and strategies. These are all-inclusive groups for parents, caregivers, family members, teachers, therapists, and community members. These groups will help you understand the best ways to guide and support a child’s development.
5. Online Support Groups for Parents & Caregivers
Many families do not have the time or are not located near enough to attend any of the above types of groups in person. In that case, online support groups be a great help. Facebook groups, and other web-based online communities are great alternatives for physical support groups where parents, siblings, grandparents, and other loved ones of special care children can lean on each other and exchange information.
Why join a support group?
Joining autism support groups can bring numerous benefits to parents of children with autism. Here are some of the key advantages listed by Cross River Therapy:
1. Emotional Support: Support groups provide a nurturing environment where parents can express their emotions, fears, and frustrations without judgment. Sharing these experiences with others who have been through similar situations can help alleviate feelings of isolation and offer emotional solace.
2. Information and Resources: Support groups often serve as a valuable source of information, providing parents with insights, strategies, and resources related to autism. By sharing knowledge and experiences, parents can learn about therapies, interventions, educational programs, and community resources that can benefit their children.
3. Practical Advice and Tips: Support groups enable parents to exchange practical advice and tips for managing various aspects of their child's life, such as behavior management, communication techniques, and navigating the healthcare system. This collective wisdom can empower parents with effective strategies to enhance their child's well-being.
4. Building Connections: Support groups foster connections and friendships among parents who share a common bond. These connections can extend beyond the group meetings, providing parents with a network of support and understanding in their day-to-day lives.
What does a “good” support group look like?
Seattle Children’s Hospital believes the answer varies, but overall elements of a quality support group include:
1. A group of people seeking support who gather voluntarily on a regular basis to meet certain needs they share in common. The group size is usually small.
2. Operate on the principle that everyone in the group stands on equal footing. No one person has more authority or power. Members are encouraged to talk about their concerns, issues, and feelings that relate to the focus of the meeting (in our case, life with autism) as well as responding to others who share.
3. Some groups use a professional facilitator, while others do not. A facilitator will be concerned with guiding the group process that may include setting ground rules and keeping the conversation balanced and on track, and creating a space where participants feel comfortable and empowered to have authentic feelings and expression in a confidential and safe environment.
4. You should feel invited to participate fully and freely. This includes being listened to and responded to.
5. It should not feel like a “bull session” during which people air their thoughts or argue their beliefs about a subject. A support group requires a more personal investment on the part of its members.
6. A support group is not necessarily a therapy group, but they often have a very therapeutic effect.
Finding the Right Support Group
When seeking support as a parent of a child with autism, finding the right support group is crucial. These groups offer a sense of community, understanding, and guidance from individuals who share similar experiences. Cross River Therapy also suggests some key considerations when searching for the right online support group:
1. Researching and Identifying Reliable Groups: It's important to research and identify reliable support groups that cater specifically to parents of children with autism. Seek recommendations from trusted sources, such as healthcare professionals or other parents who have been part of these groups.
2. Considering Group Size and Activity Level: Group size and activity level play a significant role in the effectiveness of a support group. Larger groups may offer a broader range of experiences and perspectives, but it can be more challenging to forge personal connections. Smaller groups, on the other hand, may provide a more intimate setting for sharing and support. Consider your preference and comfort level when choosing between different group sizes.
Activity level is another crucial factor to consider. An active group with regular discussions, resource sharing, and engagement can provide ongoing support and a sense of community. Look for groups where members actively participate and interact with one another. This can be an indication of an engaged and supportive community.
3. Evaluating Group Rules and Guidelines: Every support group has its own set of rules (sometimes unspoken) and guidelines to ensure a safe and respectful environment. Before joining a group, carefully evaluate these rules and guidelines to ensure they align with your personal values and needs. Pay attention to guidelines regarding confidentiality, respectful communication, and moderation. It's important to feel comfortable and secure in the group setting, knowing that your privacy and feelings will be respected.
By researching and identifying reliable groups, considering group size and activity level, and evaluating group rules and guidelines, you can find a support group that meets your specific needs as a parent of a child with autism. Engaging in such a community can provide valuable support, guidance, and a sense of belonging.
Joining an autism support group for parents can be a game-changer. It can provide you with emotional support, information and resources, and a sense of community. Remember, you are not alone, and there are many other parents out there who are going through the same thing. Take the first step and find your tribe today.
Support groups in South Africa
We are building a list of available support groups in South Africa, but at this point the list is still empty! If you are part of a support group or interested in starting one, reach out to us so that we can tell other parents about you and help to support each other!