Parents of children with autism face unique challenges that only other parents of autistic children can understand.
Depending on the level of severity, children may struggle for their whole lives with speaking, moving, learning, and more. This can be immensely stressful for parents who want more than anything to see their child improve.
There are many support groups for parents of children with autism. Offerings vary from state to state, but all across the country, parents and other caregivers can find support and understanding in these groups.
Autism spectrum disorder, typically called autism or ASD, is a developmental disability.
Symptoms associated with this condition impact a child’s ability to socialize with family and peers, communicate both verbally and nonverbally, and learn new things. People with autism often need patterns and routine. They become obsessed with one or a few interests, struggle to understand symbolism or body language, and even struggle with motor skills.
Since autism is a spectrum disorder, some people with autism do not stand out from their neurotypical friends. Others are unable to speak and need consistent therapy to manage daily life.
Since the medical and scientific understanding of childhood brain development is getting better all the time, many children receive a diagnosis of autism around 2 years old, when their mental and behavioral development begins to change compared to neurotypical toddlers. The Autism and Developmental Disabilities Monitoring (ADDM) Network estimates that 1 in 54 children in the United States is on the autism spectrum. Some adolescents and adults receive a diagnosis later in life, after struggling for a lifetime with depression, anxiety, and loneliness.
People with autism benefit from behavior therapy, especially science-based applied behavior analysis (ABA). While significant improvements can be made in therapy, there is no known cure for autism.
Parents of children with autism spend a lot of time worrying about what all this means for their child. They worry about what the future holds and how the entire family will be impacted. They may worry about how they will be able to form a deep relationship with their autistic child.
Neurodivergence can be difficult to understand. Finding a good support group for parents of children with autism can help.
Getting the Diagnosis
Parents and legal guardians of toddlers with autism are the most directly impacted by this diagnosis. They will start to watch their child’s development change, potentially stagnating, slowing down, sliding backward, or otherwise appearing abnormal.
Concerned parents should first take their child to their pediatrician for help. If the pediatrician confirms that autism is likely, they will give a referral for a specialist, such as a child psychiatrist, child psychologist, developmental pediatrician, or pediatric neurologist.
Autism must be diagnosed by a medical professional. The condition’s severity must be understood, so the child can get the right treatment to address their specific condition.
All of this work means your child is getting on track to improve, but it’s not an easy process. The stress of this experience can be taxing on parents’ ability to take care of themselves and their children.
At first, this focus on the developmental disorder can make it harder to connect with your child. You may feel like no one else is in a similar situation, and you are on your own. You may feel embarrassed if your child displays unusual behaviors in public, like having a tantrum from overstimulation, struggling with talking and making eye contact, or refusing foods of a particular color or texture.
Who Needs an Autism Support Group?
Support groups are vital for parents, caregivers, siblings, and other family or friends who are worried about the autistic people in their lives, who need support themselves, and who want to be a better resource for their loved ones.
Feeling overwhelmed, exhausted, and unwell are commonly reported by caregivers of people who suffer any condition, especially chronic illnesses or disabilities. Parents and guardians of children with autism often report feeling:
Meeting people who are going through the same problems that you are can help to ease your mental and emotional struggles. How do you find a support group to help you? We’ve outlined some suggestions below.
Ways to Find an Autism Support Group in Your City or State
There are several government agencies and nonprofits that provide information on autism support groups. Some of these organizations host support groups, and some can connect you to the right type of group for your needs.
Government Organizations Here are a few government organizations you can contact to help you find information on autism support, which includes support groups:
- Autism spectrum disorder information from the CDC: The Centers for Disease Control and Prevention (CDC) keeps track of conditions that impact Americans, from diabetes and substance abuse to mental illness and developmental conditions like autism. Their information on autism provides a solid overview of this development disorder, so you can read more about your child’s condition. They also provide a page, Links to Other Websites, with extensive information on groups offering support, funding, and research information. The page includes listings of mutual support groups, both in person and online.
- Office of Special Education and Rehabilitative Services Blog: This page provides a lot of information, personal stories and interviews, and approaches to support for parents and guardians of children with autism. Start here to understand that you are not alone. It can be a launching point for finding support through your child’s daycare or school.
- Behavioral Health Services Locator: The Substance Abuse and Mental Health Services Administration (SAMHSA) has an online search tool to help you find behavioral treatment for many conditions, including support groups for parents of children with autism.
Nonprofits & Community Organizations Nonprofits and community organizations provide a lot of support for children and adults with autism, along with their families. These are some of the leading nonprofit groups offering support for families of autistic individuals:
- Autism Speaks: This organization provides a range of information and services to help people with autism and their families, including an online support group. While many people prefer to meet in person, online support groups offer a level of anonymity, convenience, and diversity that an in-person meeting may not provide. You might be able to find more help for your specific situation or connect with families going through similar issues all over the world.
- Center for Parent Information and Resources: This organization offers trainings throughout all 50 states, so parents of young children with specific disabilities, including autism, can help the help and support they need to provide a safe and supportive environment for their children. These trainings can help you meet likeminded people going through a similar experience as well.
- YMCA: This charitable community organization offers safe spaces for a wide range of needs in various cities and counties across the United States. For example, in the Greater Charlotte area, you can find accessible activities for children with autism. You can search YMCA information based on where you live.
Connecting to Support Through ABA Therapy
Changes in insurance coverage requirements through the Affordable Care Act (ACA) and several state laws mean that insurance providers must cover treatment for autism spectrum disorders. This includes evidence-based therapies like ABA therapy.
Parents of children with autism can benefit from working directly with an ABA therapist to learn the techniques of this type of treatment. This will help you to understand your child’s treatment plan better and find ways to support your child’s ongoing developmental and behavioral improvements at home, during normal family interactions. A 2015 study published in the Journal of the American Medical Association (JAMA) shows that training parents in behavior therapy techniques reduces incidences of maladaptive behaviors. While you work with your child’s doctors to find appropriate therapy providers, ask about therapy and mutual support groups for yourself. Some therapy for families of children with autism may be covered by your health insurance. Support groups are typically free, but you can work with an individual or family counselor to find the right one for you, and your insurance will likely cover those family or individual therapy sessions.
Autism Support Groups in Specific States
Each state boasts a variety of support groups for parents of children with autism, and you can find support groups in your state by using the resources above.
Here are some options in the following states:
New York Parent to Parent of New York State
Texas The Helping House National Autism Association of North Texas Bebo's Angels Autism Support Group Many sites gather autism support group listings for specific states. For example, the University of South Florida has a page dedicated to autism-related support groups in the state.
Search for autism-specific support groups in your state, and you’ll find a variety of resources available. You can also use the support group search feature on Psychology Today to find local groups.
Finding the Right Way to Support Yourself as Your Child Is Treated for Autism
Getting children the help they need from therapists will improve their lives significantly. In fact, with the right treatment, about 3% of autistic children “lose” their diagnosis because they receive intensive behavior therapy. This means that they manage their symptoms so well, or the symptoms dissipate enough, that the diagnosis no longer applies.
About 13% of children diagnosed with autism ultimately “lose” their diagnosis as they grow up. While these individuals tend to be high-functioning individuals, this shows that behavioral interventions like ABA therapy work for many children.
When a child with autism receives the right therapy, they will feel more comfortable in a neurotypical world. They have the tools they need to communicate, learn, and navigate social interactions, and this empowers them to live independent, balanced lives.
It is vital for young children to socialize with the adults in their lives, especially their parents or guardians. This means that parents must get support, through support groups, from other parents along with therapists or leaders who run the group. Finding ways to lessen the stress in your life will help you be there for your child, so you can encourage their growth and development.
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