"My name is Sarah, I have a 23 year old and a 15 year old. My 15 year old was diagnosed with ASD and in the beginning, we were pretty desperate. It got really bad. We're talking about near-hospitalization, therapeutic schools, lots of trauma. Day to day life was just nearly impossible.
When my daughter was 11, It was really bad. There were lots of meltdowns and frustration and I was in a constant state of anxiety. It didn't feel like anxiety. It felt like anger and frustration and desperation. But I didn't realize that it was my anxieties that were fueling my inability to see it for what it was.
I wasn't understanding, and neither were the therapists or the people who were trying to help. We are in a district where our school is fantastic. They tried so hard to help. I mean, I was a pretty strong personality. I came into the IEP saying, "This is what I want and this is how it's going to be."
I think the bigger issue was that it took me a while to understand that they didn't have the tools, the resources, or the understanding to truly help. They were working on an old and outdated behavioral model that really wasn't about my child's behavior. For them they thought it was about her behavior. But in the end, through Asperger Experts, I learned it wasn't the behavior that was the problem. It was what was triggering the behavior.
I feel like, if somebody would have knocked on my head, hit me in the head with a brick, and said, "Listen up, we are missing the point!", then that would have been great, so I am trying to do that now with the reader. I find other people with kids who are struggling and trying to get the help they need and they get frustrated, and say "My kid spends all their time playing video games.", or "My kid refuses to do X, Y, or Z", or "My kid has a meltdown over this.", or "I'm worried that my kid isn't socializing enough."
They're looking at the behavior. They don't realize it, but they're looking at the behavior, and then their anxiety starts to amp up. And now they are worried about their kid's behavior and then they start to panic, and they start making demands of their child that the child just is simply not capable of fulfilling, because of the underlying problem of the parent being in Defense Mode.
A great example of this, for instance, is that right now I'm trying to learn how to speak French, that way I can speak it with a few friends who are already fluent. They try to talk to me in French, and what happens? I immediately panic, and I can't remember even how to say, "Hello, how are you?" All of the sudden, it's gone. So that's an oversimplified version of what's going on with a kid who is shut down, or melting down, or refusing to do what they're being asked to do.
I've had to explain this to family members and friends who say, "Why don't you make her do it? Just take away the internet, or just take her devices away, or refuse to let her do X, Y, or Z?" They don't understand. That would work if she felt safe and secure and grounded, but she doesn't, and even then, I don't know if that's the best way to handle it. It's a great way to destroy relationships.
To put it in the most extreme example, I saw a news article recently that said the FDA has banned shock therapy in schools. Obviously, that's horrific but there were some parents that were angry because it worked and provided treatment. I'm thinking to myself, "Of course it would work!" If you have a kid who's freaked out and you say, "Do what I say or I'm going to give you a painful electric shock", then they're going to do what you say. It worked in the sense of it got you the result that you want, but you aren't looking at the bigger picture to see that it destroyed any sense of them having any trust in humanity ever again.
So when you're looking at a kid and you're saying, "Well, he's just refusing. He's being manipulative, or he's being whatever." remember: it's for a reason. They don't feel safe. They don't feel grounded. They don't feel secure.
We don't have to get into the reasons why that may be because there's so many of them. The point is, as a parent, your opportunity is to get in there and connect with that child, make them feel safe, make them feel grounded, help them to feel like this is a safe space for them, and say, "I'm not going to punish you because you can't. I'm not going to reprimand you because you're at the moment incapable."
Some people say, "Well, he did it yesterday!" Well, yeah, yesterday he wasn't as anxious. So he was able to access that part of the brain that can help him do the thing you are requesting.
That defies the very concept of what Asperger Experts teaches, and what Holly Bridges talks about when she talks about the Polyvagal Theory and getting grounded, and getting reconnected and feeling safe. What you want to do is connect with them where they're at and in a way that they're capable of doing.
The connection piece for kids is the piece I kept missing in the beginning. It was the piece I wasn't getting. So I read and I thought, "OK, I got this, right? I got this. I get this." I see other parents often times making the same mistake I made. They read, they listened, and they didn't go in for the connection piece.
They did all the other stuff. So they might just wash their hands of the demands because the child is really highly anxious, and they step back. But then they don't go in for the connection. You have to do both. You have to connect. You have to meet that child where he is, when he's comfortable, for as long as he can sustain. You don't push.
I have to keep reminding myself "She's really stressed out" and say it over and over and over. Speaking for myself, having a brain that's wired a little differently, I see the world differently, and when things don't fit or line up the way I expect them to, it creates stress for me, and that stress amps up my anxiety.
Now, imagine that's happening constantly, and one thing is building on another until you reach the point where you're just so overwhelmed that you can't even think straight. And you don't know if you want to cry, scream, run, hide, or go to sleep because your brain is so overwhelmed. Imagine living that every day. That's not the same thing as going to work and being busy and getting a lot of phone calls. That's hard. I've been there, done that.
It's just a complete overload, way too much. Not like, they're kind of moderately stressed and have had a hard day. Like, they freaking out stress so bad that their body is literally deteriorating. It can be reversed, but it takes a long time and a lot of patience.
If I were to kind of sum up my message, I would say, look at the child's anxiety. Look at your anxiety. Know that the behaviors are coming from a need to feel safe or an inability to feel safe, and as a parent, you have the opportunity to go in there and change that, but you've got to start with yourself before you can help them, and you've got to change the way you're looking at them and thinking about how they're behaving and why they're behaving."
Note: This is an excerpt from our book "Navigating The System: Big Mistakes & New Perspectives". Get the whole book here.