Saturday, May 5, 2012

The Autism Mom's Divide.

I was checking Facebook today and saw this posted to an Autism group. Its apparently an "Autism For Dummies list of dos and don'ts" taken from a website. Sometimes I find I disagree with some other mom's on some fundamentals and this is just an example of that.The post read as follows:
Here are a few things you need to know when dealing with kids with autism. Those of you that have typical kids, or love someone with autism, please take note:
1. Please don't say to the parents, "can't you just". No we can't just give him something else to do, distract him, blah blah blah. If we could, don't you think we would?
2. Please don't tell us to ignore his behavior. "Have you ever tried ignoring it when he tells you something repeatedly?" Well I challenge you to hear "I can eat dinner at 6" every 30 seconds for five hours. Seriously. 
3. Please don't ask us "why do you think he is having a meltdown or why is he so upset?" when it seems to be for no apparent reason. Um because he has autism, that's why. If I could get that info, I would.
4. Please don't say the following, "wow you have so much on your plate", or "oh you are a saint". We have our plate and it's no bigger than anyone elses. I am far from a saint and pity is really offensive. Everyone has life and parenting challenges.
5. Offer to help and mean it. If you want to help your friend or family member, babysit, come over and engage the kid, or just listen if we need someone to talk to. We don't expect anyone to solve our problems, we just need empathy and action.
6. Don't ask us if our kid is going to college, going to drive, or going to live on his own. We would have a better chance of drowning in the bathtub than knowing that.
7. Never give up on our kids. Never look at them and think they have limitations. They may be different but they are not less!!! (TG credit there).
I am sure I can come up with more. Just like autism, nothing is as we expect it to be, so this is not a top ten list, it's a top seven!- via
So... I have to say I don't agree with the majority of this list... let me explain why... besides the impression I get from the article that the writers are angry with the general populous and have given up with "That's too hard" and "Its Autism" for excuses, the explanations are below correspond to the "rule" numbers above:

1) You can distract or calm depending on the issue and the child - Know your children, what they need, how to help them and what they can handle. 

2) Ignoring a behaviour may actually help - its annoying, its hard, and sometimes its ALMOST impossible - BUT it ISN'T IMPOSSIBLE and its a CHOICE YOU MAKE. If you feel its not worth your time/patience/sanity to ignore - then that's you're decision. But coming from someone who's had to ignore biting incidents that nearly drew blood... you certainly can "Just ignore that".

3) He/she is NOT having a meltdown "because they have autism". They're having a meltdown because they 1) are overwhelmed 2) can't communicate 3) are disturbed by something in their environment 3) are experiencing pain, sickness or something else and can't tell you why (see 2). Their meltdown is not simply "because they have autism". If you choose not to get to know your child, that's on you. Don't blame autism because you don't want to pay attention. 

4) Pitty is not offensive, however, lack of compassion is heartbreaking. Everyone has their own challenges, and you never know the true story of what someone's life is like. Don't judge me, I won't judge you. 

5) Don't offer to watch my kids - that's not helping me, that's stressing me out. Come have coffee with me, ask me questions, learn about my family and I and keep an open mind. If you want to help me, start with that. Everything else will either embarrass me, or stress me out. 

6) Its actually quite easy to drown in a bathtub. That said, don't rule out things just because they "might not happen." If the possibility is there, then its there - no matter if its realized or not. And with our kids, the possibility is always there. 

7) I totally agree with this - but add, don't give up on yourself, don't sell yourself short - You're a mom, and an amazing mom capable of great things and your child will shine through you.

What do you think? I welcome your comments!


  1. I do think it is ridiculous when people ask me what my 3 y.o. with ASD is going to be like as an adult. I couldn't answer that question for my two NT children at the same age, and I certainly can't answer it for a child who is changing as rapidly as my little one is. I don't know how she's going to be functioning 3 months from now, let alone in 15 years. Her developmental pediatrician, her neurologist, and the Regional Center psychologist all say they are optimistic about her long-term prognosis but nobody really can do more than just guess at this point.

  2. I agree Crimson Wife! That's exactly it - you can't tell even for a NT child, but that doesn't stop people from asking. For instance, if a child develops a particular interest in a subject, like music, mathematics or something else - people would naturally ask if they're going to do this in the future. Autism is no different in this respect - but how parents react to the questioning, in my opinion, is where the differences arise.