The online autism community definitely makes us feel more normal around here. The truth is, most of the parenting experiences I read about on social media come from that community. I get a daily dose of it- and it does make me forget once in a while that most families are not like ours.
Of course, we don’t really know many people personally who understand autism; and we do have to leave the house some time. I have gotten so used to hearing from autism parents online, I have to remind myself that the majority of people I encounter in the real world know next to nothing about autism. People are filled with wrong ideas about autism. Or no ideas at all. If it is not a part of their world, who can blame them?
Friends and family will attempt to know things. I may be their only resource (sorry about that). And then there is the confusing fact that no two kids with autism are alike. So they make assumptions about Teghan that don’t apply to her. Or they make assumptions about other people based on something that only applies to her….
Ugh. It’s a little much to try to educate the whole world. It’s okay. I don’t mind people not knowing things. I don’t think I have huge expectations for others. Don’t get me wrong, there are plenty of people who do have huge expectations- so you had better do your research if you are a people-pleaser. But I will do my best to defend you. Good intent goes a long way with me. I do not get offended easily.
So I was thinking about what really bothers me the most. As in what lack of knowledge from the general public makes our life the hardest. And you know what I came up with? The most difficult thing we deal with are Teghan’s encounters with other children. We are very afraid of places where children can be found playing. This includes playgrounds, Chuck E. Cheese, and any parties with children in attendance. I don’t mind explaining Teghan to other adults. It’s easy enough. I could talk all day, even.
But I hate trying to explain Teghan to other people’s children. I know, I know. But hear me out….
For example, we recently had an unusually nice day for January in Michigan. We thought about taking Teghan to the park. I am not even sure why we do that. Teghan seems to like it a bit, but after a while she just wants to run into the woods, field, or whatever surrounds the play area. It’s fun for us, I guess- for the brief amount of time she acts like she might really enjoy that slide.
But she is oblivious to other kids. Occasionally she will show some interest in an older child, and that freaks us out. Her interest will result in touching the child’s face or hair or something. And she doesn’t talk, so immediate intervention is required. But mostly she acts as if the other kids are invisible. And for her sake, we are fine. She is also quite happy to be ignored.
She has rituals. She likes to run back and forth. She doesn’t try new things easily. Before she can go down that slide, she is going to need to almost go down the slide about fifty times. If the playground is busy, she gets in the way of other kids. She’s very little and cute- so most of those kids are forgiving, even helpful. Sometimes they want to help her down the slide. Or invite her to play with them.
She doesn’t understand, and she cannot talk. This means that we must explain this to the other child. I hate it. I hate it so much. Something about this breaks my heart. Maybe it’s because we only have to explain it to the nicest kids- the ones who try to be her friend. Maybe it’s because we have buried our dreams of what normal five-year old friendships look like deep, but not deep enough. Or maybe it’s because it is so hard to explain autism to a child who has never been taught anything about autism.
The other child never understands. They understand that she can’t talk. But she isn’t deaf. It involves a bit of knowledge about social behavior, and your average adult doesn’t always grasp that concept. Telling a child that another child simply does not understand how to play or interact socially requires a little elaboration. Most kids are eager to learn more, and we are happy to answer questions- but doesn’t anyone teach their kids about this?
So I guess I do now have an expectation of others. Teach your children about social disabilities. Take time to learn enough about autism for a discussion with your child about what it is and what to expect. They are going to encounter children like Teghan, or a verbal child who is higher functioning. Maybe there won’t be someone there to explain why that child ignored them or acted in a way they didn’t understand. They may respond with cruelty or maybe just hurt feelings. They want to understand, so why not teach them?
You would really be helping out that other parent, too. I wouldn’t mind telling ten different kids that, “we are sorry, but she cannot talk. She has autism,” if that were enough. If only a child would say, “oh, I know what that is,” and go along their merry way- things would be great for us. Or if they just wanted to know more about Teghan’s situation without a whole lesson on human social behavior that I have no business explaining to your kindergartener. Because sometimes kids have a lot of questions- and our kid never has questions, so we aren’t always prepared.
So that’s the one. The one area where a lack of knowledge about autism affects us the most. I am always open to questions. And if your kid knows nothing about autism and pins me down for the answers out on the playground- I am not really going to think any less of you. But if you are the parent of a child who is not on the spectrum, and you are looking for a way to make an autism parent and child’s life a little easier- consider a lesson with your child about autism. That’s all. It would greatly benefit your child and mine. And it seemed worthwhile enough to mention.