Be different

So, there’s this message board.  I’ve been on it for over two years.  And the most-frequented section of the board is for parents… but people with ASD have been offering their perspectives there since before I’ve been around.  And for over two years, I felt accepted, even wanted there.  Parents often asked for my help specifically, sent me private messages with questions, and many of thanked me.  More than once now, I’ve even been told that I was the most helpful person (doctors, therapists, and teachers included) they’ve ever met regarding their child with autism. 

Hey.  That’s pretty cool.

And then, within the last month, a new parent snidely remarked that she didn’t really want my opinion and that this was a parents’ board and what was I doing there anyway?

I ignored it.

Then, a few days ago, a parent mentioned that her son had been eating GFCF, and that she tried one of his chicken nuggets and that she was surprised that it was good.  I responded that I found it a bit unfair that she had been feeding him food that she hadn’t first tried, because some GFCF food can be, well, nasty.  Someone came to her defense that of course parents don’t try their kids’ food.  I apologized, saying that my mom always had so I thought it was the norm.

In another thread, the same parent adamently expressed her desire for her son to be cured.  She even said she would trade her soul for a typical child.  I said that it hurt my feelings to read such things, because it made me feel like I am causing stress for my mom or that I am somehow broken, when I know I’m not. 

Oh, the flood gates opened.

Now, that parent and another parent (the same one that defended her in the above example) are saying that I don’t belong on the board.  Now, there are doctors, researchers, grandparents, teachers, friends, boyfriends, girlfriends, stepparents, and yes, people with ASD themselves on that board.  It had never occured to me not to participate.  Now three people have told me to take a hike, and I’m frustrated, confused, and a little bit offedened.  To be fair, twelve or fifteen people have also asked me to please, please stay.

I checked with the mods, who said to ignore them and of course I’m welcome.  They will not TELL the posters that I am welcome, but I am to just ignore them.  I can try…

My point is this (okay, so my point was also to get the story off my chest): These are parents of kids with ASD telling someone who’s different to get lost.  Do you see the irony?  I mean, really?  They accept all the “typical” non-parent-types, but when someone with ASD speaks out and it’s not what they want to hear, they attack me.

If this is how PARENTS of autistic kids treat people with autism, what can we expect from the general public?  I am honestly afraid to interact with people now, because I don’t think it takes too long for people to realize that something’s different about me.  I’m afraid to be seen with my staff.  I’m afraid to go to church (did I mention that ALL THREE of the people who lashed out are Christians? Don’t even GET me started!). 

I beg you, I implore you, to allow this story to force you to educate all the more.  Please.  I’m not going to fight back or try to get even or try to make right… I am going to ignore them and move on.  But don’t let this be for naught; USE it.  Teach, remind, help, rehearse, express, EDUCATE. 

If need be, re-educate yourself.  Next time you run into an adult that strikes you as odd, consider for a moment that once upon of time, they may have been your child.  Someday, your child may be that adult.  So, help me to pave the way for tomorrow’s adults, would you?

Educate.  And, not to copy John, but be different.  Please, for your kids, be different.

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8 thoughts on “Be different

  1. Yes, it is a sensible idea to try the food first. Baby birds and mothers eat food together, and so do many humans.

    (I do see the point that it could possibly be contaminated if a non-GFCF eater touches it…)

    And when people say things like trade your soul: I can see how it would hurt; as a human being and as a Christian. (And souls not being interchangeable…)

    (What happens if he “gaineth the world and loseth the soul”?)

    (It would leave me wondering: “How much is routine/ritual; how much real?”)

    Your post made me think of my impressions of the reception of the first autist-to-autist conversations recorded on the bit.listserv.autism after the Toronto International conference (1993). Many parents were on the board, and some defended its parentiality more strongly than others. This caused problems when autistic conversations came up on the list/newsgroup.

    Of course, for many of those involved, they were exciting and educative!

    I hope your contribution will be recognised as educational too.

  2. I just recently started following you on twitter via Kim Stagliano and I just wanted to let you know that you are a true inspiration to me. Don’t let those parents bother you, they are only lashing out because you force them to look at themselves differently than they want to. They want to be reassured, even if their parenting practices are wrong (I agree, they should try their childrens food!) and when you challenge their ideals you are challenging them to look at themselves in a different light. Keep standing up for what you believe in and DO NOT LET THEM SILENCE YOU.

    • Thanks, Kristin. You know, I set out to change the world’s ideas about autism when I started this “blog world,” as I call it. It just gets… what’s the word? Tired isn’t it, but do you know what I mean? I wear out. A friend told me to take a break, but I can’t, because what if someone needs to hear something I have to say? Not to mention that I NEED to write. I was created to write. Anyway, thanks again for the compliment, and feel free to shoot any questions at me. Always happy to answer them.

  3. One thing to keep in mind is that people feel more verbally free on the Internet. I frequently read the comments section of articles on CNN and MSN and people attack each other regularly for no reason. It’s unlikely than any of those parents would’ve said, “Don’t interrupt us; we don’t want your advice” in real life if you were talking to them, and it’s unlikely that the people you encounter in real life at church and in public will attack you as rudely as those people did.

    Unfortunately, that doesn’t solve the problem that those parents attacked you in the first place. I agree with you that they need some education and perspective, and whether you give it to them or not, I hope it happens to them soon. As you said, someday soon their children are going to be in your shoes, and hopefully they don’t face the same kind of issues that you do. The worst part is that you’ve really devoted your life to autism awareness, so you’re their children’s greatest ally and advocate. If those parents are going to lash out at anyone, it should really be people who behave like themselves.

  4. Just thought of something else. Is it possible that these parents are receiving so much criticism from strangers in their lives that they just can’t take even well-meaning suggestions anymore? I’ve heard parents of kids with special needs (particularly autism) complain that people are always giving them unsolicited advice, and saying that if they’d just discipline their kids more, they wouldn’t act the way they do. Maybe they’re just so sick of people making suggestions that lashing out online (rather than in person) is their only outlet. Something to consider, from a more sympathetic point of view.

  5. Unfortunately you get bad people in all walks of life and in a world of autism you’re going to get a few more than average. I’ve had comments on my blog that have questionned my ethics, my ability to parent and the safety of my children

    I’m proud of you for moving on like this.

  6. Jenny, he’s 18 months old and possibly not even autistic! He has a speech delay and she says “a few sensory issues.” No rigidity, no restricted interests, no feeding issues, no social issues. I can’t see people questioning her parenting for that. She even says she won’t have another child because “now that this has happened to us, we couldn’t risk something so horrible happening again. It’s a stab to my heart.” Puh-lease. With therapy, he’ll be indistinguisable.

  7. Lydia, you responded to one of my posts on a message board a year or so ago, and I was thankful for your insight. My 7-year-old can’t give me a lot of input about things I’m doing, and I know that you’re a different individual than she is, but you also understand what her perspective of the world is like better than I do, so I’m glad to hear your thoughts and opinions.

    Don’t let those parents make you upset. On every message board I’ve ever been on, there develops a group of people who see themselves as better than the rest and they can be rude towards other posters. I don’t think I’ve ever been on a message board that HASN’T had that. Keep posting! You’re helping a lot of parents by sharing your opinions and experiences!

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