Creating a strong circle of support is essential when raising a child with autism or being diagnosed on the spectrum. Having people who share experiences, can be a sounding board or provide resources is incredibly important.
Many families are able to get some support through doctors, therapists and well-meaning friends. However, many feel that online community groups are where they gain the most support, even if they never meet others face-to-face. Online support and friendships can be incredibly helpful for families and autistics who are unable to venture out into the community due to wandering, anxiety or sensory sensitivities.
The Portland Autism Moms (PAM), an active Facebook group of nearly 900 members, provides a lifeline for many on the spectrum or parenting a child with ASD.
“For me, by far the most important benefit from being on PAM has been hearing from autistic moms who started me on a path of listening to autistics versus the NT (neurotypical) professional community,” says mom Jenny Schoonbee. “It has completely changed my world view of autism, and what my child needs. He and our family are thriving, happy and successful.”
Schoonbee’s family endured constant stress, daily meltdowns and behaviors that were incredibly overwhelming. “We were all caught up in the very overwhelming ‘deficit’ paradigm of autism, whereas learning and embracing the neurodiversity paradigm has been liberating and filled with joy.”
With the surge in social media, creating connections with other families, autistics, educators and therapists is easier now more than ever. Online groups can be tailored to just about anything, creating camaraderie and quick connections beneficial to many looking for help and support.
Online users can hone in on very specific areas of support: special education help (IEPs, laws and more); local providers and resources (therapy options, inclusive recreation and more); clubs and gaming groups; and much more. These groups can grow to thousands of active users, making the pool of knowledge and voices accessible and often immediate.
Many times, families raising special needs children have difficulty maintaining relationships with friends they once had. Connecting with parents who “get it” can be valuable beyond measure. Online community members can also provide non-biased, neutral input to help guide medical and therapeutic decisions by sharing personal outcomes.
“Being different can be very isolating if you try to constantly fit in with NT families,” says Christine Engelke, another member of the PAM group. “Through PAM we have found the relief that comes from supportive and understanding parents and kids who ‘get it’ and more than that, think we’re great just as we are.”
While some diagnosed with autism struggle with navigating social situations, many can thrive online. The pressure to read cues, gestures and facial expressions is gone, allowing someone with autism to be their authentic self that can be difficult in live situations.
Teens and adults with autism can use online communities for meet-ups, create in-person clubs and even navigate the dating world. Using common interests to connect online can help practice social conversations and language, as well as lead to lasting friendships.
“These were the first friends I made in Portland,” says mom Dani Price Oates. “It’s hard to make friends on the playground when your kid doesn’t want to play with any other children.”
Other helpful resources for online communities: