The Essence of Autism

I was in an autism discussion group and we were talking about how anxiety can play a big part of being autistic. I mentioned that if I could do away with the anxiety part and keep the autistic part, I think that would be ok. Someone else said that anxiety was autism and it can't be separated. I'm going to have to disagree.

I get that we get anxiety for a lot of different reasons, many of them being sensory issues, some of them being social issues, and others from childhood trauma or C-PTSD. But you can have anxiety without autism, just as you can have sensory processing disorder without autism. Anxiety isn't part of the diagnostic criteria for autism, nor do I think it should be.

What I do think is that we can have it better. We can have and deserve a better quality of life. We don't have to just throw up our arms and say, "well, I'm Autistic and anxious and there's nothing I can do!" Nor do we need to hold the belief that if we manage to control or get rid of the anxiety issues, that we'll somehow lose our autistic identity. 

I really believe the essence of autism is in our brain structure - the connections it has created that are different from neurotypicals. It's deep in our chemistry and make up. It's not something that can be fundamentally changed or taken away. But I do believe there is hope and possibility to alleviate some of the most trying symptoms, like the incapacitating anxiety, and the sensory discomforts.

It's true, as adults, we can often change our immediate surroundings to suit us. We make cozy homes for ourselves, when we can. But we still have to go out in the world, which is by and large not suited for many of us. I think we have been and can continue to make changes in the outside world as well, but I also see a need for us to be able to just be more comfortable in our own bodies. That might be medication. That might mean therapy, but whatever it is, I think we should be confident that we do not have to hold on dearly to the symptoms that are holding us back in order to preserve our autistic identity.

I write this as I'm coming out of a shutdown/burnout. What I wouldn't do to be able to remain functional. I have a family, a job - I can't afford to shutdown, but it happens and I don't blame my autism. I don't think I win any autism brownie points for having them. I think I could be just as authentically autistic without them. Just because I hate my anxiety, it doesn't mean I hate myself or autism. For me, my identity isn't so tied up in that part.

What do you think? What is the essence of autism?

How To Prevent Meltdowns

I started out wanting to describe the experience and then realized it's probably best to know how to prevent meltdowns in the first place because they are really horrible. If you think it's horrible as an observer, I can tell you it's 100% worse as an experiencer (I know I totally just made up a word).

A lot of a meltdown is a loss of control of the situation. Autistic people give many signs BEFORE we get anywhere near meltdown stage, but they are often ignored. Children are more powerless and not so good at communicating their needs, so they have them more often. Pushing/forcing/encouraging your Autistic child to do things they are not ready to do can lead to a whole lot of anxiety and eventually a meltdown. I really want parents to try and understand even when they think they are not pushing too much, a lot of the time they are. I know parents don't mean to, because it seems normal and easy for you and all the other kids you know, but it's not the same with an Autistic kid. When I think back to my childhood, it was an overwhelming mess of anxiety. What makes anxiety different from other issues is that it requires an extra set of skills to overcome it, and kids usually don't have those skills.

When an Autistic child seems to be resistant to do something, like take a walk around the block holding your hand for example, it is not because they hate you, are in their own world, don't enjoy walking or just want to be difficult. They are resistant because they don't know how they will feel outside in the big unknown. They don't know what they will encounter and have to process once out there. They don't know exactly when you will return. They don't know if the toys they have happily organized in a row sorted by color, to give their lives a sense of control and orderliness, will be in the same spots they left them in when they get back. They don't know if they will have their senses overloaded. They don't know if they will be expected to speak to people and say, "hello" or that the correct words will come out at the appropriate time. They don't know if their legs will be tired. They remember that time they fell on the sidewalk and fear it will happen again. They remember being scared by the sound of a fire engine rushing by and are scared that may happen again. They remember the time you took them for ice cream and they got a stomach ache after, and they're scared that will happen again. They fear you won't take them for ice cream. All of that. In the flash of the 30 seconds it took for you to say, "let's go for a walk!" - that went through their mind. I can almost guarantee it.

Not all Autistic kids are that high anxiety, but a lot of us are (or were). I was and it only gets worse the more you try to force us otherwise and ignore the state of anxiety we are in. What happens to high anxiety children? They grow up into high anxiety adults who don't have much respect for parents who disregarded their feelings when most vulnerable.

So the parent or friend or whatever other person has to work on helping the Autistic through the not knowing part. This takes patience, sensitivity and creativity.

I use speech and my presence to calm my child. That's just how I am best able to work with him. Even when he doesn't respond to me with speech, I keep talking. You can use pictures or social stories or whatever way you think works. Do not stop trying to communicate with your child even if they do not respond in the way you expect or are comfortable with. Even if they don't look at you or even appear to hear you, they are, trust me.

So going back to the walk example, I'm going to say it's a leisurely walk with no particular aim other than some fresh air. If you are heading somewhere in a rush, you should prepare with more warnings preparation than this.

Let's say both mom and dad want to take a relaxing walk around the block. You can go to your child and say, "mom and dad would both like to take a walk. We would both like you to come. We want to all go out as a family. We will just walk around the block once and come back. We want you to hold our hands and stay on the sidewalk. You can leave your toys exactly where they are right now and they will be there when we get back. If you need to pee, you should do it now. We will go in 5 minutes. You will need to wear shoes (or a sweater, hat etc). When we get back it will be time for snack/lunch/bath."

Now I don't mean just ramble all that stuff off without taking a breath, but that's the sort of detail we want to know. If yours is the type to ask questions, then answer those questions, patiently, without rolling your eyes and sighing like a teenager because you've answered those questions 200 times before. We need those questions answered each and every time. We need you to be the adult and patiently do that for us until we are able to do it for ourselves. We are relying on you to calm our fears because the world is too much for us to take by ourselves. If you can kiss a boo-boo when we fall, you can answer those questions for us. Autistic kids are doing the equivalent of running into your arms every day, numerous times a day, looking for your love and support. Don't let us down because it presents itself as a series of questions or stims.

A child who cannot ask questions is still asking those questions in their head and needing answers, so answer the questions before trying to go out. I've done this sort of stuff with my kid since he was a baby. If he started crying in the car, I knew I had to start calming him by answering some questions. You can do this with any kid, Autistic or not, and I guarantee your day will go a whole lot more smoothly. I taught daycare workers to do the same thing and it worked for them.

Yes, I am seriously proposing you tell your 3 year old where, when and how you are going and when you are coming back. It's not spoiling them, it's giving them information. You are still the boss, don't worry about that, you will always be. You are still the parent. That won't change. But you are changing the relationship you can have with a child who happens to worry a lot more than others. There may still be protests, but over time it will get easier - especially if you don't change the plan and you continue to respect the high need for reassurance. If they can trust you to give them correct and up to date information, as well as protect them, they will be better able to trust others and themselves when they are older.

You might want to read What Does A Meltdown or Shutdown Feel Like?