Building Bridges: Support Networks for Parents of Children with Autism or Disabilities

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For parents, it’s a pleasure to see their children taking their first steps, hearing them talk, watching them interact with other children, and enjoying their childhood. However, these experiences and parenting journeys can vary for different people, especially children with autism, disabilities, and other special needs. Even after you have received the diagnosis from a doctor, you may have questions about how to handle your unique situation.

Autism spectrum disorder (ASD) can make a child’s development different from an average child, as it can affect the timeline and progression of normal child development. Raising a child with autism can be extremely challenging, and it can make you feel frustrated, helpless, and isolated.  

Though your path may be different from that of many parents, you don’t have to try to do it alone. There are autism support groups that can offer you some guidance, resources, and emotional support you need as a parent or caregiver of a child with ASD and special needs. Support networks can connect you with other parents who are facing the same struggles.

a preschooler with autism overwhelmed with sounds

Challenges of Parenting or Caring for a Child with Autism

Parents and caregivers of children with ASD face challenges that most parents don’t experience. It’s because autism is a lifelong developmental disability that impairs normal life functioning. Unlike typical kids who grow up independent, children with autism may never fully be independent, even as adults. Because of overdependence and special care needs, the parenting and caregiving tasks can be grueling and never-ending.

Here are some of the challenges that parents of an autistic child face:  

1. Stress

Caregiving to a child with autism is not an easy feat. It comes with its own set of ups and downs and challenges, therefore causing stress. Every child with ASD is unique, and taking care of them may be a full-time job for some parents and families. Each child has their own set of issues, so they have to keep a mental list of many minor things they need to take care of due to the child’s eccentricities and their condition’s severities. Nuclear families and single parents face extra stress in taking care of their children because they may not have the support and assistance of other family members or their extended family.

As they face struggles of caregiving, they may also experience feelings such as anger, guilt, helplessness, resentment, shame, and many other negative feelings related to their child’s disability. Thinking about their child’s future also causes worry, fear, and anxiety.

2. Financial challenges

Autism requires lifelong care and treatment, and there’s no currently known cure for this condition. This creates financial stress for the family. Usually, one parent is forced to quit their employment or career to take care of the child and adjust to their special needs, which causes financial difficulties. At times, parents and caregivers feel the need to change careers, make changes, or work extra hours for extra income to cover the high cost of special education and treatment.

The absence of insurance that covers treatment for ASD also contributes to financial difficulties for the families. Sometimes, parents are hesitant or unable to reveal their financial situation, which can have a negative impact on the family in general.

3. Communication challenges

Children with autism can find verbal communication a challenge – not to mention many of them are unable to read non-verbal communication cues. For parents of such children, communicating with them is a problem that compounds their stress and anxiety. They may get frustrated and stressed because their child does not understand them or is unable to empathize with their feelings and emotions. They can also find it hard to understand the child’s needs and wants because the child is unable to communicate them properly.

4. Family life challenges

An autism diagnosis can cause a drastic change in family life. They have to make major lifestyle adjustments to adapt their family to their new reality in terms of special treatment and care for the child with ASD.

These changes can compound and affect the relationship and communication levels between spouses, as well as the parents with their other kids. Some spouses feel like they are neglected, as most of the time, the energy and effort of the caregiver goes to the child with ASD. Research has shown higher rates of divorce between parents of children with autism than parents with normal kids. Also, the other children may feel like they are given less time, energy, and money compared to their siblings with autism. This may lead to feelings of jealousy, resentment, hostility, and deterioration of sibling relationships. Some children may feel the need to rebel to get more attention from their parents.

5. Lack of self-care

Without support from a hired caregiver, extended family, or friends, parents may find themselves struggling to care for their child, manage their home, and perform well at their job. This gives them little or no time for themselves. This means they have fewer or no opportunities to socialize, exercise, rest, pursue hobbies and interests, and so on. The identity of the parent or caregiver can feel lost, as they devote most of their life to caring for the child with unique complexities.

6. Restricted social activities

Some parents form lifelong friendships with one another because their kids are bonding or are involved with activities, like for instance, soccer, swimming, or ballet. But the case is different for parents of autistic kids. Children with ASD are usually unable to participate in social activities due to their underdeveloped social skills, and they are highly dependent on their parents.

Some parents deliberately avoid family gatherings or social activities because they worry about how their child may behave in public because some can exhibit complex behaviors like repetitive mannerisms, tantrums, and aggressive outbursts. This makes the parent feel isolated from friends, families, or anyone of their own age because they don’t want to be embarrassed.

Some avoid social gatherings due to social stigma and negative stereotypes other people have regarding autism. Not everyone is sensitive, understanding, or accepting. Negative reactions from other people may affect the parents and the child personally, and these effects may linger over time.

How Does Autism Support Groups Help Parents and Caregivers?

The challenges mentioned earlier are valid reasons why parents and caregivers of children with ASD need support. It’s for getting some help they need, for lightening up their load, and for keeping their sanity intact because, without support, it can easily lead to depression and deterioration of family relationships.

Being a part of an autism community can make the journey feel a lot easier. Here’s how a support group can help:

1. It’s where you can get or share helpful ideas

Autism support groups provide a platform for parents to share their challenges, experiences, and ideas for managing autism-related issues. They help parents gain ideas and strategies that can help them deal with certain situations.

For instance, a parent may share a tip on how they got their child to eat what the family eats and manage their nit-picking with foods or a strategy that helps their child communicate when they are feeling overwhelmed or angry.

2. They can help you feel less alone

It’s not uncommon for parents to experience some level of despair when they see other parents have an easier time. This could make anyone feel alone since it can feel like nobody gets you. When you see that your child isn’t developing like kids his age, it’s comforting to know that other kids like yours and parents understand what you’re going through.

Being a part of autism support groups helps parents deal with negative emotions and feel less distant from other parents. These groups create an environment where parents can connect with other parents going through the same situations and gain some relief.

3. It gives you space to vent out without judgment

When a parent hits a low point when dealing with a child, it’s natural to get frustrated. For instance, when your child throws a big tantrum in the middle of an already stressful day, you may feel like you want to have a meltdown yourself.

Autism support groups are a safe space where you can vent out and express your feelings without judgment. Sometimes, getting your emotions off your chest can bring a huge relief, and you’ll even gain some support from people who have experienced the same thing, saying that it’s okay to feel that way. You can also find hope from those who have successfully managed the type of situation you are dealing with. Support groups are a place where you can hear, “It gets better.”

4. It’s a place to get expert advice

If you belong to an expert-led support group, you can get relevant information about autism and the best practices for raising children with special needs. Experts can help you handle issues with your child that greatly concern you, such as learning and development, poor communication, social skills, unusual reactions, obsessions, and so on.

Expert-led groups can also help you find the right resources – from books to articles to counselors who can help you manage your special-needs situations.

Other kinds of groups may even have members who are professionals dealing with children with autism, and they can be valuable members of the support group whom you can talk to. Sometimes, you may even find doctors, social workers, or counselors who specialize in ASD because they have been a parent or a loved one to someone with autism themselves.

5. It can help you appreciate your child

When you compare your kid to other kids without ASD, you may feel sorry for your child and yourself. It’s natural to wish things were different with your kid. But when you join an autism parent support group, you will discover the various issues other parents are dealing with, which can help you see your child in a different light. For instance, if you struggle because your kid likes to strike up super random conversations with strangers, hearing another parent say, “I wish my kid would talk to others besides me” will allow you to value your child more.

You may feel overwhelmed and despaired, but when you meet other parents who are struggling more than you, it will make you appreciate your child for who they are. You may even find yourself in the giving end – the one who gives hope and encouragement, which can be a great feeling.

6. It’s a place to form deep friendships and connections

Remember how caring for a child with autism makes you feel isolated from your world? Being in a community of parents like you allows you to form friendships with fellow adults who care about you, understand you, and care about how your child is doing. And when you’re in dire need of help, they are the people you can count on to give actual help because they get how upsetting your situation can be.

Kinds of Autism Support Groups

People with ASD and their families can benefit greatly from autism support groups. There are different types of support groups that you can join. You can choose depending on your needs, preferences, and location.

1. Peer-led groups

Peer-led support groups are led by parents and caregivers of children with autism or by those who have autism themselves. These groups are often less structured and formed for giving and receiving advice, understanding, and empathy.

2. Professional-led groups

These groups and organizations are typically run and funded by professionals like doctors, therapists, psychologists, social workers, teachers, counselors, and volunteers who are trained to work with children with autism and their families. These groups have a specific form and structure.

3. Education support groups

These groups focus on providing valuable information on autism and the latest developments in therapies and strategies. These are all-inclusive groups for parents, caregivers, family members, therapists, teachers, and community members. These groups meet and encourage members to deliver a presentation about a specific topic regularly.

4. Online support groups

Many families do not live near enough to attend any of the above groups in person. In these scenarios, online support groups can be a big help. Facebook groups, forums, and other online communities are great alternatives for support and help where loved ones of special care children can lean on one another and exchange information.

How to Maximize the Benefits of Being in an Autism Support Group

Joining a support group will only benefit you if you choose to interact and share experiences. But it’s important to remember that everyone in the group is there for the same reason: to experience the same benefits you want. Keep an open mind and be respectful of others, even if they differ from your own. Here’s how to engage effectively to maximize your time in a support group:

1. Follow the rules and guidelines

Most groups will have a specific set of rules and guidelines. In online groups, it will be found somewhere on their page. Be aware of them first before participating in discussions or posting content. Usually, there are rules about confidentiality, equal participation, and more. Respect and follow the rules to maintain the group’s integrity and ensure you won’t get banned.

Avoid discussing personal and sensitive information you have gathered from the group to the public. People went to the group because it’s a safe space, so protect your co-members from external judgments. Refrain from disclosing group member details outside the group.

2. Participate

In group discussions, give your input and share ideas to keep the conversation going. Others may want to hear your opinion, plus you don’t know who you can help unless you speak or interact. Some people may also have the same queries and concerns like yours.

4. Be respectful

Parents, caregivers, and family members of children with autism are already going through a hard time in their lives outside the support group, so the last thing they need is judgment from other members. Some people rely on the group as their safe place to vent out their innermost feelings, so understand that it comes from moments of frustration. Having a supportive and understanding attitude is essential.

Some may raise topics that can tick you off or rub you off the wrong way, but remember that autism and its symptoms manifest differently for every child. Always keep an open mind and refrain from being negative, rude, or critical because if you’re in the same situation, you don’t want judgments from strangers, too.

4. Be a good listener

If you’re uncomfortable sharing your personal stories, especially during your initial days with the group, you can benefit simply from listening. Be an active listener and try to empathize with others’ struggles and experiences. Even if you don’t go through the same thing with your child, you can still learn something that can be handy in times of need.

5. Have a supportive attitude

Understand that some members of the group are seeking emotional support and validation. Gestures like active listening, agreeing, empathizing, a pat on the back or hug, affirming, giving your advice, and so on can help other members feel supported. Let them feel they are not alone, as that’s what you want to feel also.

6. Protect your child’s privacy

Do not give away much information, especially in online groups. Don’t disclose personal data like your address, your child’s school, etc., as they may be predators lurking in the group, pretending. As much as possible, avoid posting your child’s photos, especially embarrassing and degrading ones, on your online groups.

Takeaway

Parenting is hard, but parenting and caring for a child with autism is even harder. You shouldn’t feel alone, especially if there are autism support networks in your area. Look for a group that can support your needs so you can experience the benefits of being in a community of like-minded parents and caregivers.  

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