Autism Watch: 2007

Tough Crowd?

Posted on: June 19, 2009

I don’t know if it’s just me, but lately, I’ve been really hesitant to join or post to autism e-lists too much. I know people are having a lot of bad days — myself included — but we’re not a very forgiving crowd at times. We want everyone to understand us, but we don’t necessarily extend that to others in our own community. (Much like my church, but I won’t digress.)

I’ll admit, I don’t always carry the party line. I’m a working  mom, which isn’t necessarily easy. I don’t agree that we all deserve governmental money to support our children when they’re in school all day and we could possibly work. I don’t agree that we should complain about every decrease in our free money if we’re still getting a pretty fair shake. (Personally, I’d prefer to give up the Starbucks than complain about the decrease in IHSS here in California.) I don’t think that a disability means my child should get free summer camp or other stuff not deemed ‘necessary’ when parents of neurotypical kids have to budget to make it happen, or not have it happen at all. Don’t get me wrong — our kids deserve all therapies that will help them, but I don’t know if summer camp and swim lessons are therapy.

Anyway..if you share an opinion that’s different, you’re often blasted. And not in a nice way. Another example? My son’s on medication. He had (has?) self-injurious behaviors that are very dangerous to himself, as well as severe mood swings that very adversely affect his daily living. On meds, the therapies we provide (keyword: we — because we are a two-income family, we have to pay for much of ds’s help on our own. Fair? Heck no. But what is?) have a chance to work. Without meds, well, we won’t go there. For us, meds are important. They are necessary. Sure, they aren’t necessary for every kid, nor do they work for every kid, but does it mean my kid shouldn’t be on them? Does that mean that I’m uneducated or lazy because I use medication? No way, yet I’ve heard that several times. I’ve heard that I need to read up on side effects, as though I haven’t. Ha.

Back to my topic.

Today I asked a question somewhere else online. A simple question trying to understand something, and the response I got was several curt sentences, as though I am stupid, punctuated with exclamation points. To quote Steve Martin, excuuuuuse me.

We can be a really tough crowd, high expectations of the way people treat our child or look at us, but not so forgiving with people that don’t agree with us or ask questions or point out a different side. It almost makes a person want to walk away…which plays into the whole ‘why isn’t the autism community united?’

One day on most autism lists will give you that answer. Spend a couple of hours in a meeting, and people are a little nicer because they’re face-to-face, but the gang mentality can still take place. We want tolerance, but we don’t give it. And we wonder why the general public doesn’t tolerate our kids.

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2 Responses to "Tough Crowd?"

I like what you are doing here. Keep up the good work!

Tina

I remember looking at the Autism Speaks website when my son was first diagnosed and the message boards were FULL of mean people. I felt awful after looking and haven’t ever visited their message boards since!! I rarely ask questions on message boards for this reason!

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