“Why don’t you share your stuff on Facebook? I would love to read more.”
Someone left this comment after one of my pieces was published online and I shared the article on Facebook.
This is really the only time I share my stuff on Facebook. When some online organization deems one of my pieces worthy of their publication – well, I think it’s cool, so I share.
Many years ago, I was scrolling through comments on my Facebook post and stopped.
In the midst of some positive comments one spit out at me:
“You are not the only person to have a child with autism, Robyn. I don’t know why you are making such a big deal.”
I looked back at my post – a post I had put out for autism awareness and our experience with autism on Facebook, before I had a blog, and confirmed what I had thought.
No, I had not referenced that I was the only person to have a child with autism. I was just telling our story. Why was this person being so insensitive?
This was on Facebook. This was a “friend” who was so callously honest in their feelings. Someone I had willing accepted a friend request from.
Through the years I have received a few similar comments from this person. Giving me parenting advice with an eye roll I can feel in the words.
This person does not have a child with special needs. This person has supportive family who graciously watch the couple’s kids so they can post about their “date nights” and “much needed trips to the islands.”
Through the years I began to limit the amount of information I was putting on Facebook about autism in our family.
I didn’t stop just because of the outspoken callous one. I shrug at that person. In general, I had simply found that my Facebook “friends” were not interested in the subject. Autism didn’t apply to them.
My blog is not private, it’s public. Anyone that wants to read what I write or what I have to say about autism in our family can come here to read. If anyone wants to share, feel free.
I feel like the people that come here to read are those that support us or can relate to something that I say. I feel connected. And happy to share.
Last month the kids’ elementary school celebrated autism awareness month.
Also, Catelyn joined “The Autism Club.” The club was generated by a couple of students who had siblings on the spectrum. Knowing Declan is on the spectrum, Catelyn was asked to join.
The Autism Club had weekly meetings. Stickers were created and handed out to the entire school by the club one day. One Friday, the students wore blue.
“Did you tell them you are on the spectrum too?”
“No.”
“But if anyone has any questions you would be a great person to ask.”
“I don’t want to tell anyone!”
And that was that. I shrugged – it’s up to her.
I wondered if Catelyn had felt the insensitivities of others and didn’t want to be exposed? Was she afraid of having to face the negative comments of outspoken callous ones?
Catelyn has only told her two closest friends that she is on the autism spectrum. That is where she feels safe and they support her.
From my perspective, makes sense to me.
One thing I have discovered as a parent to children on the spectrum is that when autism came into our lives, a lot of our friends and supports changed. We found people, organizations that were able to support us. We made friends that could relate to our story.
I am happy to have friends and “friends” who may not understand autism in our family.
I am just very thankful for those who have stuck with us and supported us here. Thank you!
I have become more educated on the subject because of you. It’s not apples to apples, but I also stopped sharing much of my writing on my FB page. Often times people thought I was writing about them. I think your blog and the information you share is great. You are giving an ‘in the trenches’ point of view which is honest and loving. Great work.
Thank you so much!! I really appreciate it!!
This kind of attitude makes my blood boil, when people make completely ignorant and insensitive comments like this. I’m feeling very defensive for you, Robyn! This is exactly why I don’t do any social media at all, the only online presence I maintain is my blog, because I’ve noticed that generally bloggers are nicer people. I’m happy to say that I don’t really know how Facebook works but I would be unfriending people like this, as nobody needs such negativity in their lives. Sorry you had this unpleasant person making unfounded and ill-educated judgements, and I’m glad you’ve managed to rise above it with your customary dignity. Things do change when autism appears in a family, and often it’s then that you discover the difference between real and fake ‘friends’. And none of us need the false type. Thanks for sharing this with us Robyn, and well done to Catelyn for joining the Autism Club. 🙂
Thank you so much, Alli! I really enjoy the bloggers here on WordPress too – so supportive and you are right – nice people! I am a very sensitive person, sometimes to a fault, and I was hurt someone would say that. But I can shrug it away now. Autism changes a lot and it took awhile, but I am happy to have connected with others like you. So happy to connect on our autism journeys! 🙂
Me too, Robyn. I’m the same as you, and I to have learned to shrug off ignorant and insensitive comments. It comes with the autism territory. Far better to engage with decent people who support and share rather then judge and belittle others. So I’m so glad I found you, and here’s to all our blogging friends! 🙂 🙂
It is funny how some parents/people consider themselves an expert on things and aren’t afraid to say so. I think you hit the nail on the head, Robyn, when you said she did not have special needs kids, had support system, could afford to go to the “islands” (alone without their kids), and probably love being considered a mother and/or father of the year, each year. They are blessed in their “reality”, which is not many other people’s reality, but consider their reality the result of their parenting.
I dealt with someone like this recently, and on their best day, they are fingernails across the chalkboard, on their best day! This isn’t always true, but it often seems the more struggles, challenges and pain someone has and deals with, the more kind, gentle and compassionate they are.
Oh gosh, Jeff – yes. Very perceptive!
I agree with you. I know I am a different person than I was five years ago! Thanks so much, Jeff!
Block that idiot.
In my experience, only about 2% of the people who follow me aren’t bloggers. I toyed with posting on facebook and I was so ignored that I became embarrassed to post there. Do you belong to Autism Awareness groups on facebook? They might be interested in reading what you have to say. Or maybe not. I just joined a Tourette awareness group and all the posts are: Has anyone tried coconut oil? Is anyone on Clonidine? Does anyone have this tic? That tic? Very dull stuff. I don’t think people want to invest any time in reading short essays or articles anymore. People only want to connect on a surface level… and then offer unsolicited advice.
I think I am at 1% the number is so low, but you’re right. A blogger had asked me to make a FB page and I hesitated as I really wanted no connection to it from my own personal page. And thought the same would happen. I had posted a couple of my pieces years ago and they were duds. No one made the great leap of “clicking” on the post I shared. So I never went any further with it. You know what, you are right. Us writers here are readers too. We found a niche we enjoy of reading AND writing. I guess it really isn’t for everyone.
Facebook has become a sad parody. Not a particularly nice place to spend time. It’s because of sites like yours that autism awareness is starting to rise. But we have such a long journey ahead of us. Not only does your site raise awareness it provides for want a refuge for parents like me looking for support, guidance and a friendly smile. Can’t thank you enough. Keep up the great work. Our son is the same as Catelyn in terms of broadcasting to his peers. It’s his choice and I support him whatever he wants.
I agree. I am too sensitive for FB. I hesitate to post anything there. Thank you so much. Your site as well. I agree. I have found if someone is not affected by autism there isn’t a lot of interest in it. I know I was guilty of that as well before autism entered my life. I am so happy to have connected with others – all over the world like yourself – who are experiencing a similar reality to myself. Thank you!
Great perspective, the more experience and knowledge that is shared relieves stress and anxiety for others
Thank you!
I’m glad you changed to blogging. I’ve learned so much from you.
Thank you so much!
This is the one thing I always recommend to friends who are dealing with a new diagnosis, find your tribe. The people that will support you and stand next to you when your child has a meltdown on the playground or will listen as you try to figure out how to handle a school issue. They are the people that support us with empathy and understanding when even our own families don’t always get it because they are right there in the trenches with you.
That is great advice. It took me awhile to find some people. Felt very alone at first! But being connected really makes a difference!