Support: What’s it all about anyway?
After an event earlier this week, I thought it might be a good idea to write about support and what I think good support should be.
The definition of support, according to dictionary.com, is to sustain a person under trial or affliction. In this case, autism and the many issues that go along with it is the trial/affliction.
To me, supporting someone includes giving them a variety of resources (from all members of the group) so they can decide what best suits their needs and take action as they see fit — basically providing them with a number of tools for their toolbox that they can pull out as needed. We all have different experiences and for a parent with a child who is newly diagnosed on the spectrum, it can be overwhelming
I belong to several different support groups and late last week I decided to join one called Autism Network of Fort Belvoir. I thought it would be a good chance to connect with other military parents (even though my husband is now retired) and swap experiences and information. I’d been there a few days and it was a positive experience, adding my two cents when people had questions about therapy or other issues. Then on Monday night I thought I would post about a TACA (Talk About Curing Autism) coffee that was coming up the next day. The local TACA group is a great group of ladies and we talk about a variety of issues including diet, poop, doctors, treatments, supplements, the list goes on and on.
Well, interestingly enough me posting about that event got me removed from the support page. Say What?! I messaged the admin and asked why she removed me. She told me she and I did not share the same beliefs regarding autism. In fact here’s what she said, verbatim:
“Because we don’t share the same beliefs regarding autism. It is my feeling that autism can be cured so your coffee doesn’t work for me. And ultimately it is my page so I deleted you. There are plenty of other support networks and pages out there to meet your needs, including AMFAS. If you can’t find a page, I encourage you to start your own. That is what I did when I couldn’t find one that met my needs.”
I’ve never met this woman personally and so how does she know what all of my views on autism are, just because the word “cured” is in the acronym TACA she makes a judgment on my beliefs.
I’ve witnessed the support she provides in her own way by setting up meet-ups between other parents and children, and trying to enlist people to help with donations for those in need. Those are all great things! I wouldn’t think about attacking her methods of support, but now I see there’s a critical link missing. She is denying the other parents in that group a more expansive realm of knowledge simply because of what she does or doesn’t believe in.
This was my response to her: “It’s very sad you are so close-minded. There are a lot of different things I believe about autism. TACA is a very good support group and it’s important for people to have choices. I have never in any way said I disagreed with what you’re posting. I’ve tried to add to the conversation. If that’s not support, I don’t know what is. What you’re giving is definitely not support because you are not allowing people to explore their options.”
And she replied back: “That is why I encourage you to start your own page. You and other people with your same beliefs can have coffees and do things the way you want. I don’t have to agree with everything you say nor do I have to share it. This page is about what I needed, what I wanted for support. So I could care less if you think I am close-minded. It was never about you or what you think. Best of luck.”
One of the parents I heard from had been attacked because of her beliefs and another gal I know was also deleted from the page.
So, basically because she does like the event that I posted she’s denying me (by removing me from the page) and other people who belong to the page a variety of information and extra avenues of support — clearly a disservice to the people depending on that page for support, especially parents with a new diagnosis. I certainly hope they will look to other support venues and not limit themselves to the narrow scope of support that her page provides.
Interestingly enough I had two other mothers reach out to me yesterday from that page. I hope that they and other parents will join some of the other great groups that are available in our area and not be limited in the support they can get. Just to name a few there’s AMFAS, POAC, AS-NV and FAN just to name a few. There are so many resources out there, I encourage them to reach for the sky and never stop learning about how they can help their child.
And, if I can help those parents in any way I’m ready and able to do what I can. After all, that’s what I think support is all about.