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How To Prevent Autism Burnout

How To Prevent Autism Burnout

 

I’m tired of autism.

As someone who writes a website about it, this is understandably a problem. But as an autistic parent of autistic kids, this is an enormous problem and a costly error on my part.

Saying that out loud makes me feel incredibly guilty, like some kind of traitor to myself and my kids and my community. But the truth is that I am completely burnt out on the topic, and mad at myself that I let it get this far. I ignored the signs that I was reaching saturation point, and I should have known better because I’ve been in this place before.

Many years ago when my oldest son was diagnosed my response was to read everything that had ever been written about autism. I couldn’t get enough, soaking up the information like a sponge until it filled every nook and cranny of my already-full brain.

And when I was done with that it was time for hyperactive action mode. I spent long hours lobbying the government for funding, worked on research projects, helped start a national advocacy group, wrote dozens of postgrad papers and attended a zillion conferences. It was all autism all the time, and not surprisingly it wasn’t long before I became burnt out and completely sick of thinking about it.

It was a stupid mistake to make. There were still bundles of everyday challenges that needed dealing with, I couldn’t afford to be ‘over it’. It took a long time to fix, and I lost precious time and focus trying to get my life back into some kind of balance.

Now I’m right back there again, the place where I’m tired of autism. I’m not talking about being burnt out from the challenges of being autistic or caring for people who are, or the exhaustion from the constant fighting for the things my family needs. That’s a whole other kind of tired. Those are the things that I need to conserve my energy for, and you can’t tackle any of them when you don’t even want to think about it anymore.

What I’m tired of is the constant exposure to autism. I’m tired of seeing it in my social media feeds twenty-four hours a day. I’m tired of the relentless, brutal arguing in the community. I’m tired of hearing about the latest ‘cause du jour’ research. I’m tired of puzzle pieces and blue lights and inspirational memes. I’m tired of the fact that despite the overwhelming amount of talk about autism, my family is no closer to feeling understood or accepted or supported by the general community.

How did I end up here again?

Well, because these days it’s so easy to push yourself past the saturation point. The internet is pervasive in our lives at every moment, and it brings with it far more information, emotion, drama and social contact than we could ever properly process. And when it comes to autism, there is a whole lot of all of that stuff. There are 26 million Google results, thousands of Facebook pages. Our social circles are more likely to be made up of people sharing common experiences, which means that we’re having more conversations about autism than ever before.

That’s a lot of input and nobody can deal with it all. The risk of overload and overexposure is very real, and something that we should be talking about - not only because it affects so many of us, but because we can’t afford to have large groups of people dropping out of the conversation about autism. We need to figure out how to protect ourselves and each other from experiencing saturation so we can have a sustained, strong, inclusive community.

So here’s my advice about how to protect yourself from burnout, in the hopes that it will help you to not make the same mistakes that I did.

Take control

If you inundate your life, your mind, your reading with any one thing you are at risk of getting overwhelmed and with autism that risk is high and costly. Protect yourself before it happens. Pay attention and watch for signs of overload. Be proactive about making the changes towards a balance that works for you.

Pace yourself

This is a long road. If you’re a parent, your child five years from now is going to need you to not be sick of hearing about autism. For the rest of your life, you’re never going to stop thinking about it and you’re never going to stop wanting to help your kids. You need to be able to do both of those things in positive, constructive ways so take it slowly.

Allocate your resources

If you’re going to pace yourself then the time you spend talking and reading about autism is an extremely valuable resource, so make it count. How much time and energy do you have right now, and where’s the best place to use it?

Maybe it’s reading and learning about autism, getting involved with advocacy, or fighting for an important issue. Maybe it’s spending time in support groups and sharing your experiences with friends who understand, or helping other families in need. Or maybe it’s getting ready for your next IEP meeting. You will rarely be able to do all of these at once and certainly not for a sustained amount of time.

Stay out of arguments

There’s a lot to disagree about and passionate people on every side of the fence. Some are louder and more critical than others, and it’s natural to want to stand up for your beliefs and the decisions you make. But you don’t have to fight every fight. Before you get involved take a moment to consider whether it’s worth the cost to you... do you want to spend some of that valuable autism headspace on this discussion?

Get over the fear of missing out

It’s okay to drop out for a while. I’ve been doing this for over twenty years and trust me, things haven’t changed much. All the information, discussions and arguments will still be there waiting for you when you have the time and energy to dive into them.

Help each other

I have close friends who protect me from exposure to stuff that might be overwhelming or emotionally triggering for me, and who understand that keeping my opinion to myself is not the same as having nothing to say or not caring about the fight. They think I don’t notice, but I do and I love them for it because it’s such a caring act. We need to do more of this kind of thing, protecting each other from burnout makes us a stronger community.

You don’t need to read everything

Be picky about what you choose to shove into your brain. There's a lot of information out there waiting for you, but you don't actually need it all right this second and a lot of it is garbage. Plus if you try to cram in too much too quickly you won't remember any of it when you need it.

You don’t need to be everywhere

It can be tempting to join every support group or forum that has the word autism in it, but that can be overwhelming and some are going to hurt more than help. Be selective. It doesn’t matter how popular a space is or if your friends hang out there, if it makes you feel crappy or overloaded then it’s not a good use of your valuable resources.

Think before you share

Please take a moment to consider whether you’re adding value by hitting that share button or just adding to the noise in an already overwhelmed community.

 

As for me, I’m working on finding my balance again. That means focusing on the things I can control, like what I fill my brain with and the people and spaces I choose to hang around. I’m trying to spend less time on social media and being judicious about what and how much I share with the people who follow me. I’m also focusing on my family, getting involved in non-autism-related stuff and spending time with friends one-on-one rather than in large support groups.

I know that I’m far from being the only one who feels burnt out in this way, so it’s clearly important to have this conversation and I don’t see enough of that happening. We need to care more about not only the information and messages that are broadcast about autism, but how the people within our community are dealing with those.

So if you’re a parent who’s getting to the point where you're sick of hearing about autism or experiencing information overload, please don't wait. Now is the time to actively take steps to prevent yourself from getting burnt out.

 

This article was first published on 29 April, 2014.

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