Admittedly I am a bit of an asshole. I don’t mean to be, but my sense of humor runs closer to the dark side than the light. I find things funny that other people are horrified by and I love a good innuendo. This is tempered by the fact that my husband makes me look like a little angel because his inner ahole is way worse than mine. I speak fluent sarcasm. You know I love you when I stop pretending to be super polite and start giving you crap. Its one of the many ways I express my level of comfort with people. Perhaps it should be the other way around, but I can’t help my sense of humor or ill-timed thats-what-she-said any more than I can my blue eyes. It just is. It has been super helpful because it has weeded out the people in my life that can’t stand it, find it really annoying/off-putting/inappropriate or that are maybe to nice for me to be friends with. We all find our people eventually, so maybe this is my way of thinning the herd unconsciously. I never set out to say weird things, they just happen. Luckily I have a group of solid people in my life who either love it or put up with it….or a mixture of both.
Which brings me to the point of this blog. Enough me me me, blah blah blah. While I have some social filter, admittedly not much, you add autism to the mix and it can get really interesting. While I can see the effect I am having and rein it in sometimes, my kids lack that ability. Lots of kids do actually, it’s why we love their opinions because they are always unfiltered and honest. As they grow up they begin to use their intuition and social filters that they have wired into their brains and start to hold things back a little. Maybe to avoid hurting someones feelings they don’t tell them that their mullet looks weird. Or they learned early on that you don’t comment on someones weight so they stop pointing out how big people’s bellies are. Much the way language is learned, so are our social skills through trial and error over and over as we grow. I can only speak about my kids and the ones close to them that I have watched grow up, so I don’t want to be too broad here but this is what I have seen. Autism makes this harder.
My kids are in a social skills class. They receive instruction at home and in school from a few different people. They each have a therapist they see to talk about making sense of feelings they are having. It is a ton of work for them to learn basic things. Jack can pick things up very quickly, but his personality runs more towards people-pleasing than max. Both of them have had to be taught what you can and can’t say, and why. In a logical and unemotional way…..which can be a struggle for me sometimes. While unabashed honesty in kids is refreshing and cute sometimes, that fades as you get older and then you just look rude or unfeeling. Which is not the case. Both of my boys have lots of feelings. They both obsess over doing the wrong thing afterwards, but in the moment their filter just isn’t working. All the things you and I have learned just by growing up need to be explicitly taught. Once they have memorized the words, usually they look at books with similar scenarios and are asked whats happening and why. Once they master that they move on to roleplaying, or maybe their therapist and I will stop them in the middle of a situation and say, “What could you say right now?” Enough of this repetition and in becomes part of their social filter. It is much harder for them, but not impossible. It can get tricky though. If we move on to another topic, sometimes the last thing they learned gets forgotten. Things like making eye contact, responding when someone says hello to you, apologizing when you hurt someone all have to be broken down and repeated over and over until they are learned. Then maintained.
There is some controversy about this. There are autistic adults that want to just be who they are. They don’t want to be forced to act a way that’s not natural to them, and I think thats a very valid point. It is no wonder that life is so exhausting and frustrating for them. I can see it in my boys. If someone was constantly correcting your behavior and telling you that you were doing it wrong, that would be very upsetting. Walking through life feeling like you are missing something in the conversations happening around you or saying the wrong things to people doesn’t feel good. I have experienced that first hand, but imagine that being all the time. Being corrected all the time. Being told you are doing it wrong. I wouldn’t take that well, so why do we expect them to? I am a huge fan of aba. I have seen the incredible difference its made in out home and how its made my kids lives a bit easier. I can see the adults with autism point though, and I hope we are doing right by them. I look forward to getting their views on it as they get older, because I think it needs to be tailored to fit them. It isn’t a one size fits all situation for any of us. At the very least I know we are all doing the best we can to cope right now, and thats all anyone an ask.
The title of this blog comes form some of the explicit phrases we have been teaching jack with his therapist. One of his hardest struggles right now is with Destroyer the Bat (see previous blog) and what to do or say when he gets upset. Instead of turning into a wild animal and leaping on his brother to use his teeny fists, he has been learning words to stand up for himself. Some of them are as follows.
I don’t deserve to be talked to like that.
I don’t like that.
Stop hurting me.
It’s not my fault.
It took several sessions with these, we started with the first one. Getting him say it over and over in a louder voice and then going over the scenarios where he could use it. Then in the moment when max was saying mean things asking jack what he could say, and starting the phrase for him. Then it transitioned to me saying ‘I”, and then jack would remember the phrase and say the whole thing. We made flash cards for the others with him and he drew pictures of the faces he felt when things happened he doesn’t like. We run through them together and with his therapist. We talked about when the right time is to use each one. He has started slowly to use them on his own and stand up for himself. Destroyer comes out a little less. Sometimes it even stops max in his tracks, because he is learning slowly the effect the words he says on the people around him.
This is EXHAUSTING work. For them and for us. It’s repetitive and if we don’t stay on top of it and maintain it, they will forget all the things they have learned. It is worth every second though. With each new thing or phrase they learn, they pieces click into place for them. You can see them understanding the world around them a little more. That is the goal. I don’t ever want them to lose the essence of who they are, and just become what everyone else wants them to be. I just want them to have the skills they need to navigate the world they live in, when they are in it. As they get older and can give us more feedback about how it makes them feel, this could change but right now I feel good. I can see the magic happening. They can see it too, when things are going well every now and then one of them will look up and say with disbelief, “We are actually getting along,”
Worth every second.
Autism Squared 