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Autism resources for parents and caregivers: Where to go for information and support

When Keischa Pruden’s now 27-year-old son, Aaron, was first diagnosed with autism  as a young child, information about the disorder was fairly minimal. “At the time, there wasn’t much support or information for autistic people or their families at the time.”

Pruden says that the internet was young and bare-bones — leaving her to find information on ways to help her son pretty much entirely on her own through “trial and error,” she says. 

Fast-forward to today, Pruden is now a licensed therapist and autism advocate. She wants the families she helps to have an easier time assimilating to an autism diagnosis than she did. 

Dr. Richard Frye, child neurologist and chief of neurodevelopmental disorders at Barrow Neurological Institute at Phoenix Children’s Hospital, agrees that for families with children who have autism, community and accessibility to educational resources is absolutely crucial. 

“Caring for a child with autism spectrum disorder can be difficult and complicated,” says Frye. “In order to learn about the best way to care for your child and the local resources available, it is best to involve yourself with others in the community who can inform and support you.”

So, what are these challenges, exactly? For starters, Pruden says that autism is often paired with certain biological (like gastrointestinal sensitivities) and psychological challenges (like depression, anxiety and obsessive compulsive disorder), many of which require outside help. The Centers for Disease Control and Prevention also lists unusual sleeping and eating habits, difficulty communicating and delayed cognitive skill as some other tell-tale signs (and sometimes challenges) associated with autism in children. 

That said, there are countless advocacy organizations, support groups and social networks available to help kids who have autism live healthy, fulfilling, active, engaging lives. Here, Pruden, Frye and other experts and parents share their top autism resources. 

Autism advocacy groups

Autism Speaks

This autism advocacy site “connects autistic individuals and their families to support groups with members who have similar interests and needs and offer resources that can guide constituents through their unique journeys,” explains Andrew Nelson, the director of Autism Speaks’ Autism Response Team. 

Of the tens of thousands of folks who interact with Autism Speaks each year, says Nelson, the number-one request is typically for community support. “Finding community helps grow a person̵7;s support network and overall quality of life,” he notes.

Here are some of the top benefits the organization provides, according to Nelson:

• An My Autism Guide tool to find nearby Autism Speaks walks, groups and community events 
• A tool to help parents find and help connect with over 100 nationwide Autism Speaks Parent Training and Information centers, which are aimed at helping parents learn more about an autism diagnosis and understand how to better help their child
• Educational tools, such as where to get an autism diagnosis, what steps to take once you get an official diagnosis, schools and special education, advocacy and support and inclusion and community activities

The National Autism Association

From educational resources to therapy and inspiration for autism fundraisers and community events, the National Autism Association’s website is a one-stop-shop for caregivers of children with autism. 

Here are a handful of top features to look out for: 

• A local support group directory to connect with similar families and communities 
• Helpful resources to combat challenges unique to autism, including preventing wandering and how to deal with bullies at school  
• First step toolkits to give parents and caregivers a step-by-step plan for dealing with an autism diagnosis 

Autism Society of America (ASA)

Jessica Myszak, alicensed child psychologist and director of The Help and Healing Center, often recommends the ASA to families of clients who have recently been diagnosed with autism. “This long-standing organization has resources by topic, a blog and a national helpline that can help you connect to resources and services in your area,” she explains. 

Pruden also recommends the ASA  for their national reach, user-friendly website and relevant resources for autistic people and their families. 

Some of ASA’s best features:

• Autism Source, a convenient tool that allows parents to find the autism-specific service they need (ranging from dental services to financial aid) in nearby locations. “This is a searchable resource database for various types of services,” explains Myszak who adds that you can use the site to search for a particular type of therapy or doctor.
• Educational resources, including explainers on what autism is, how it’s diagnosed, and best forms of treatment 
• Advocacy tools, including up-to-date news on legislation regarding autism and ways to engage with local representatives 

Autistic Self Advocacy Network (ASAN)

Parenting or caring for a child with autism means doing everything within one’s power to ensure that child leads a healthy, fulfilling life. While a major component to that is education and understanding regarding the diagnosis, there’s also an advocacy perspective — pushing the world to be a better, more accepting place for autistic people. That’s the concept driving the Autistic Self Advocacy Network (ASAN). 

“ASAN̵7;s stance is strong, but they also offer information on why they feel the way they do,” explains Pruden, noting that you’ll find top-notch resources for those wishing to become stronger self-advocates for autism.

Here’s how ASAN helps parents of children with autism get involved and be stronger autism advocates:

• An easy-to-use interface for families with autistic children on tracking local legislation, finding elected officials to speak to and ways to take action 
• Ways to get involved in the autism community, from volunteering for ASAN to joining an ASAN-affiliated local group
• Educational tools and resources to help families navigate diagnosis and treatment   

An online tool for families navigating an autism diagnosis

Autism Navigator

Autism Navigator is just that — a multifaceted tool aimed at helping parents and caregivers navigate an autism diagnosis. It’s a resource that Myszack refers to her clients often. “This site has webinars, resources, a virtual community, courses and books for families along with a collection of videos and information for families who are exploring the possibility of a diagnosis,” she explains. 

Here’s what else you’ll find within Autism Navigator: 

• Detailed autism glossaries and educational guides to help parents and caregivers make sense of a diagnosis and move forward with confidence 
• Free educational courses and webinars for caregivers and parents 
• A provider directory to help connect families with professionals who specialize in autism 

Social networks for parents and caregivers of children who have autism

MyAutismTeam

For Emma Gordon, whose now 8-year-old son, David, was diagnosed with autism, coming to terms with the disorder was a challenge. “[The diagnosis] was a lot to take in, and it took me a year to fully accept that I was a parent to a child with special needs,” she recalls. 

For Gordon, a key component in ensuring her son thrived was via community and support through MyAutismTeam. “I was able to meet with lots of parents of kids with autism through this social network,” she explains. “They understand every bit of your struggles making it easy for you to lean on them for support, get more information, helping hands and advice.”

Here are some of the most interacted with (and popular) features of the site, according to MyAutismTeam: 

• An activity page detailing member updates, which include images, stories, thoughts and anecdotes where “daily triumphs and trials and shared and supported”
• A “Find People Like You” locator tool to help connect users with other parents who have children of similar age diagnosed with autism 
• A detailed Q&A section where parents can find answers to other users’ top questions, in addition to space for new users to ask questions to MyAutismTeam directly 

Facebook

Of all the experts we interviewed (including parents), the top connecting tool for families with children who have autism, by far, was Facebook. 

Facebook groups make it possible for parents and caregivers of an autistic child to quickly access others who share common interests and find support, explains Pruden. “At the end of the day, we all have a need to feel seen and supported in our daily lives,” she acknowledges.

Myszack agrees, adding that Facebook groups can be great to learn more about particular schools or gain social support, but parents should use caution since these are not moderated very intensely.”

While a plethora of Facebook groups for parents and caregivers of children with autism exist — such as Autism Parents Support Group, Autistic Allies and Autism Parents Support & Discussion Group —  it’s important to vet each group before signing on. Ensure there are clear terms set forth by moderators that ban hateful, dangerous speech. And if members of the group offer ideas for autism treatments, therapies or interventions that look unfamiliar, be sure to discuss with a doctor thoroughly before trying them.