Janissy wrote:
I have seen this and it is only by sheer willpower that I haven't done it myself. There are several paths that a parent of an autistic child can go down and these parents are unfortunately on the "shame" path. I've seen it happen and it almost happened with me and my daughter until I took major personal steps to get off that path.
Here's how it happens:
You have a toddler. All toddlers melt down and do stimmy things. People look daggers at you when this happens in public and wonder, sometimes aloud, why you can't control that child. But fellow parents will tend to cut you slack, especially if they have young kids too, not adult kids.
Then you have a preschooler. Some preschoolers melt down and do stimmy things, although less than toddlers. People look daggers at you even more because the kid looks a little old to be doing that. But fellow parents of young kids still cut you slack.
The you have an elementary school kid. Very few of the other kids that age are still have meltdowns and doing stimmy things. The angry looks have really ramped up because EVERYBODY thinks by now that you should have taught the kid how to behave. Fellow parents no longer cut you slack because their own kids of that age have grown out of it. This is when the shame starts. After having enough people glare at you and mutter " why can't the parents CONTROL that child?" or say it outright to your face, you start to feel intense shame. Shame is what happens when you get repeatedly scolded for things you can't control.
I was headed that way with my daughter and made a deliberate and conscious effort to get off the shame path even when people glared and scolded. These parents have now been on the shame path for so long that they are horribly entrenched and their son is the worse for it, since it puts him on a shame path too.
The next time this happens, instead of internally scolding people who are clearly filled with shame after quite a lot of scolding from people who feel the opposite of you (that it ISN'T ok for him to stim), say that what he's doing is ok and it doesn't bother you. The more people express "being ok" with autistic behaviours, the less shame there will be for parents and kids alike. It's all very well to say "who cares what people think" but in reality, it's very hard to be scolded and glared at whenever you go out in public without feeling shame because of it. I stepped off that path on purpose because I could see it would ultimately be harmful for my daughter. But the horror of it is, these parents and many like them are surrounded by people who tell them that they MUST stay on this path or they are bad parents. That's what makes it so hard to get off it. You not only have to deafen yourself to the scolding and glares of strangers, you have to deafen yourself to the near-constant advice that if you let this go, you are a bad parent.
So the next time you witness something like this, try to push the parents off the shame path by letting them know that it's ok. Because you may be literally the only person who has said or even thinks that it's ok. The autistic kids will thank you.
For the record, the "he's autistic" was unlikely to be playing the sympathy card. What is far more likely was that it was an apology for his behaviour- which they assumed appalled you. I'm quite glad it didn't appall you, but you are in the minority with that, and hopefully can become a vocal minority so parents know this is ok. People who feel shame also feel like they owe the world an apology.
HALLELUJAH!! !
You've described our experience exactly. Since our son remains undiagnosed at 12, the pressure from the outside builds. I have a lot of Aspergers traits myself, so I've never been 'judgmental' with him, but I've certainly been frustrated... especially when our traits work against each other negatively. (ie, the more scattered his behaviour becomes, the more scattered my brain gets... or if my desire to turn up a song I absolutely adore, collides with his need for silence.. he wins on this one, because I can sympathize.)
Tonight, after taking his Staterra, he felt really unwell, feeling hot, tense stomach (...I've told his psychiatrist many times that he's sensitive to medications of almost any kind, he's an anxious guy as well)... I laid down beside him, turned the fan on, pointed at his face to cool him, tickled his back (he LOVES this) and he said "Mom, I wish I didn't have to take medication to make my brain normal." He has (at least what appears to be from the outside, to strangers, severe ADHD). I reminded him of my imperfections, and asked him if he thought I was abnormal... in his bluntly honest way, he said "well ..yeah?" I said, we might not be considered normal, but I love us exactly the way we are. We'll talk to the Dr when we see him in 2 weeks. If school wasn't utterly impossible for him without meds, I certainly would not give them to him. He needs an education, and it's hard to get if your action and mind are all over the place. I hope we can get something resolved ASAP. (We're waiting to get into an assessment centre, so far, we've been on this list for 4 months.)
Until then, we struggle on, I learn as much as humanly possible, and hopefully we'll get some answers and proper guidance. I feel like my kid's been let down in nearly every way possible, true, but I would never use his potenial autism as an excuse for poor behaviour. If he wants to twirls his hands, fine, if he wants to bounce up & down in a line up, great, as long as he's not bouncing into another persons space (trust me, he'd be PISSED if they bounced into his) ...if he were to start tapping on the cash register, I wouldn't say "He's potentially autistic" I'd remind him to keep his hands to himself.
I feel like I'm on both sides of the fence on this one.
01 Aug 2009, 6:20 pm
