The Autism Blog

Autism Moms – How a Facebook group helps a community find strength

September 24, 2018

Of all the emotions you go through with one or multiple diagnosis of autism, the one that hit me the hardest was isolation. Living in a typical world with very non-typical children.  I felt like the only one struggling which just reinforced my already judgmental mindset of “what are you complaining about, all parents are tired!”

I knew that my people were out there but it just wasn’t happening in therapy waiting rooms or at school pick up.  So, one evening (after some vino) I looked at Facebook and thought I wonder what’s out there?  I found autism moms groups in Kentucky, Georgia, New Jersey, anywhere but here so I pounced and created Autism Moms of Seattle, now called Raising Autistic Kids of WA.

At first it was just me and a few friends. That was 4 years ago. The group has grown to 1847 moms and an average of about 300 posts per week. We have a sister group in San Francisco and splinter groups for kids with challenging behaviors and teens & adults. I also run an Autism Moms of Non-Verbal Kids group which is worldwide. I try to make sure everyone is an autism mom and they get their own welcome into the group with no pressure to introduce yourself if you’re not ready. We have ground rules such as no politics, religion, “cures” or business posting but our main mantra is to show love and support to all.

Having a group on social media has been a great format as it allows people to join and sit on the sidelines and watch. Not everyone wants to be front and present especially when emotions are so raw.  Moderating a group this size does come with its challenges though.  We have almost 2000 moms who are all at a different stage of their journey with completely different children.  This sometimes results in heightened emotions however I have four wonderful moderators who help me keep the group running smoothly.

I had no idea the group would ever grow to the size it has and it just keeps on growing! There truly is strength in numbers and over the years I’ve watched moms with a new diagnosis grow and become veterans to help other moms. I’ve seen moms with a diagnosis that day come into the group feeling lost and alone and watched our group come to the rescue to hold her up.  I’ve seen moms struggling to find that dentist that understands autism or get advice on autism-friendly places to take their children.  I’ve seen friendships form that maybe wouldn’t have happened outside the group and children with autism find their first true friends.

The most rewarding part of the group is seeing on a daily basis that there is true strength in community. Coming together to laugh, vent and cry helps us all remember that we are NOT alone and that someone in the group will understand what we are going through.

Here are some quotes from members of Autism Moms:

"Autism Moms of Seattle means that I have not one (biological) sister but over a thousand. We agree, disagree, cry together, laugh together, vent, send countless hugs and hearts, and share resources and ideas."

"Love, support and zero judgment. It is nice to have families that can relate to this crazy journey we are on."

"It has helped me access resources that I wouldn’t have otherwise known about."

"In Autism Moms – we have found a family of people who get us, get our kids and are there to support us through our challenges – and NONE of that would have happened without Nikki. I go to bed every day thankful for Autism Moms and the people there – they are my rocks upon which to wash my sorrows so I can great my son every morning with a smile so he does not see my fears. Without the community Nikki started – my world would be a bleak lonely place."