When I Didn't Feel Welcome in an Autism Support Facebook Group

For us, diagnosis was not a surprise. We’d long asked our pediatricians about autism. From the earliest moments, it was obvious our son was different than other babies we’d been around. We thought a lot of the differences could be attributed to his cleft lip and palate, the fact that his mom and dad are both a bit quirky and that he was an only child at that point. By the time he was 3, I was certain that he was on the spectrum, but he was already receiving speech and occupational therapy for food aversions and his cleft lip and palate. We wouldn’t have added any other services, so I was comfortable with forging along without diagnosis. I had lots of online information regarding sensory processing disorder and found much help and comfort in learning.

Preschool came and went, and he did well. But by kindergarten, I knew we had to do something else. In October 2011, I spoke with the school psychologist for the first time and asked for a formal assessment. In December, we received our formal diagnosis. I’ll never forget. We took the boy out of his martial arts class, explaining to the teacher that we were going to take some time to focus on therapies again but that we hoped at a later time we’d be back. That’s when I got my first apology for our diagnosis. I was no stranger to apologies; after all, our son was also born with a birth difference. But this one hit me in the gut.

I took to the Internet and finally joined Facebook. I expected to find community. Belonging. Moms welcoming me with open arms and warm hearts. On January 5, 2012, this is what I blogged:

I don’t quite know what I expected when we received the Asperger diagnosis. Perhaps, community? Understanding? Peace? I don’t know. It’s hard to feel part of a community when there is so much division and anger. One group says, you aren’t autistic enough to be here, you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent his day struggling to contain stims. You don’t see him when he’s sad because he feels as if he has no friends. As humans, we all want love and understanding. Because I speak of Asperger syndrome, it doesn’t mean I don’t want care for the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We’re all doing our best to navigate this world and form community. Perhaps, I look in the wrong places. Perhaps community is closer than message boards, websites and blogs. Perhaps, I need to forge a community of my own.

Do you see that last sentence? “Perhaps, I need to forge a community of my own…” That’s exactly what I did by creating a closed Facebook group, which I still have. It’s full of the most amazing, supportive, phenomenal women I’ve never known. We laugh at ourselves, whine, complain, cheer for each other and our children. It’s the single best autism related-thing I’ve ever done for myself. The second step, was starting the public Facebook page, AutismInOurHouse. I started by sharing my blog, which forced me to write in a new way, a more in-depth perspective. By doing this, I’ve gained more insight into my thoughts. The more I write about my feelings, the more I think about them and am able to sort and work through them.

If I could go back to diagnosis day, I’d tell myself, “Do exactly what you are feeling the need to do. Find your people.” No matter the diagnosis one receives, no one understands like the people who are walking the same path. Even the same path has different pebbles and stones for each walker, but nothing replaces knowing that the person you’re talking to — even via private message on Facebook — “gets it.” Nothing. Go. Find your people.

unnamed (100)

This post originally appeared on Autism in Our House.

Find this story helpful? Share it with someone you care about.