By Katrina Moody
Let’s Mold Different Perceptions of Autism and Autistic People
When Suzanne Wright penned her opinion piece for Autism Speaks last November, she didn’t inspire me to action, she didn’t help anyone understand the spectrum of Autism, she didn’t help autistic people (adults or children) feel valued and respected.
If you haven’t read the letter you can Google for it, I refuse to link to it. I know there are some parents who feel Autism Speaks really does speak for them and their experience in dealing with autism. But after seeing her words literally call my kids a tragedy, imply that they are missing, imply my kids and others who happen to be autistic are singlehandedly destroying their families, their parent’s marriages …
I was convinced that someone somewhere at that organization had lost touch with the Autism I know and love. And they don’t know the autistic folks I know – because the adults and children I know, including the ones I adore and love and call my own – they are amazing, beautiful and unique people.
Respect our Differences – even our Differences in Opinion
I found, over the weeks and months that followed, that I was increasingly sensitive to the negativity, the almost dehumanization, that seems to accompany some forms of autism awareness. Even some parents would use words to describe their experience that made me flinch. Maybe they were having a bad day, or they were just at a different point in their journey, but it made me increasingly uncomfortable.
Why was I so sensitive?
Not because their experience of feeling overwhelmed was wrong … it’s not about being right or wrong … it’s because the negativity was becoming harder for me to deal with. I actually wrote a friend in a panic wondering if something was wrong with me. I found myself upset by these posts because they seemed to be all I was reading.
Let me reiterate that there’s NOTHING wrong with parents venting and dealing with their experience in their own way. And sometimes I vent too … BUT I follow a few rules …
Our Rules of Posting:
- I don’t share deeply personal things in a public forum - when I post something or ask for prayer I won’t always include all the details (sometimes even friends-only can end up letting a LOT of folks see that private post).
- If I share something about my husband or my kids publicly, I ask myself if they would mind having it out there. And if I can, I ask them (Bobby and Andy always have final veto power over what I publish, and while Logan isn’t able to verbalize his wants yet, my goal is to share with respect foremost in mind).
- I’m careful of details I put in groups, too – Facebook Groups (and most groups and forums online, honestly) come with three different levels — Open, Closed, and Secret. You must assume ANYONE can see something if you post it in an open group, and should assume your own risk in other groups. Trust the people in the group before you share to even a secret group, because once it’s out there, it’s out there.
- Ask yourself this: Do you need to vent? Could it hurt my child’s feelings? Could it embarrass them unduly?
- There’s more but that’s the biggest part of my own internal checklist (please leave your suggestions in the comments!). There are safe places to vent, and there are safe places to go if you need help, or if you are in crisis. Please reach out to me if you need to hook up with any of those or if you just need an ear…
Read more at: http://katscafe.org/autism-unique-awesome