I am Autistic and I prefer structure

Do you know how to make a person with autism comfortable? Give them structure.

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When I am uncomfortable, stressed, overstimulated, or upset, the only thing that helps is having a very specific schedule. If there is a fire drill or another unexpected disruption in my schedule – no matter what it is – I get extremely agitated and might even have a meltdown. I need everything at certain times for certain amounts of time. Having this will reduce anxiety and allow me to function better if things happen that are not expected.

So here’s my advice: get rid of clutter! Clutter contributes to sensory overload, which leads to meltdowns. In one of my previous blog posts, I discussed the feeling of being overwhelmed by different sensations all at once and how this leads to anxiety and stress. If your loved one with autism has a meltdown and it happens in your home, the first thing you need to do is clean up clutter! They will be so overwhelmed by seeing everything disorganized that they might have been able to deal with their feelings before, but now suddenly, it’s too much for them. By cleaning up after a meltdown, you are reducing sensory stimuli, giving them something new to focus on, and creating a less overwhelming environment for them – all of which helps reduce future meltdowns or at least prevents smaller ones from escalating into bigger ones.

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It also works the other way around: if I notice that my loved ones are having a rough time emotionally or feel overloaded, I remind them about their schedule and encourage them to stick to it as much as possible. This helps reduce stress for them, and I feel like it is the least I can do if they are supporting me in any way.

So be as organized as you can because you never know when a loved one with autism will need your guidance! And don’t forget that people with autism have emotions just like everyone else – we have good days and bad days. They might not always want or ask for help, but that doesn’t mean that they don’t really need it. Give us a chance to show how strong we actually are by being there for us emotionally whenever we need someone. We love hugs, kisses, cuddles, kind words – all of those things tell us that someone cares. The world is overwhelming enough already, so if you can make it a little bit easier for us, do!

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I know it might be hard to remember all of this in the beginning – trust me, I understand how difficult it can be to learn or think about something like this! But take your time and remember that even though people with autism may seem like they are perfect at coping with everything life throws their way, they actually need help sometimes. So don’t be afraid to step up and try out some new strategies or approaches that will work best for you and your loved one!

“But wait…” you might say. “How am I supposed to know what my loved one needs? What if I can’t tell that they’re overwhelmed or overstimulated?”

The good news is that I have a very simple solution for this problem, and it’s even something you can do yourself! The answer you’re looking for is structure.

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Take a day where everything has to happen at the same time – your loved one with autism isn’t allowed to shift anything around. If they need to take a bath between 3:00-3:10, make them take it on the dot – if necessary, set an alarm clock right next to them, so they know exactly when it’s time. Give them only 15 minutes after breakfast to play with their favourite toy and then give it back – no negotiating! And most importantly: don’t let them create any new rules or expectations! Make sure that they have a schedule written down and follow it as close as possible.

At first, they might even hate you for taking away their freedom to make new plans – but with time, your loved one will learn that this is how life works sometimes. This is the only way to reduce anxiety related to unpredictability and prepare them for situations where things don’t always go according to plan. And let me tell you from my own experience: a little bit of structure goes a long way. It helps us feel more relaxed and secure, which ultimately leads to everyone being happier.

“So there you go,” you say, “you just told me how I can help someone with autism! Now, what about the other way around?”

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Well, if your loved one with autism helps you to be more organized and gives you that sense of security that comes from knowing that there is a plan in place for everything without having to think about it all the time. Well, don’t tell them I said this, but they might make an excellent assistant.

Being in charge of keeping track of their schedule in addition to yours (or maybe even instead of yours) sounds like quite the task. But think about it: when do you feel most overwhelmed or tired? And when are things easiest for you – do certain people’s company help with your mood? If so, then that is the time you should try to use your help the most. Work together to make sure all of your plans will be met, and both of your needs can be fulfilled!

You might worry about how much all this structure might cost: “Will I have to change my entire life around?” or “Where will we sit at lunch? Will we always eat at the same time now?”. Don’t worry – as long as you’re helping without making too many sacrifices for it, there isn’t really anything wrong with combining schedules! I know that sounds like a contradiction, but keep in mind that everyone involved has probably been feeling overwhelmed by chaotic situations (for example: working retail or waiting tables where everything constantly changes – not to mention any job where clients change their minds every five seconds) for a good reason. The person with autism might not have been able to tell you why, but perhaps now you can understand the need they have for predictability and order – sometimes even more so than other people! So let them help out whenever possible – it will also help to learn about your personal limits when it comes to schedules.

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Of course, there are always exceptions. Sometimes, thanks to sensory issues or another mental disability, your loved one just won’t be able to take on that responsibility right away. Or maybe they simply don’t want something that difficult in their life right now (it’s unlikely this would happen if they’re grown adults but still). You should not feel pressured into taking up this task if you don’t want to – I have heard horror stories about people being obsessed with controlling every aspect of their loved one’s life, and that is definitely not worth it.

The goal here is to make everyone’s lives easier. So an exception is fine, as long as it doesn’t undermine the point of trying out this new routine in the first place (for example, “I’m sorry but my daughter is sick today, let me know if there are any changes”). Just because your loved one’s comfort means a little more to you than anyone else’s does not mean you should be willing to make huge sacrifices for them at any time! You wouldn’t like it if they did that! (And they will most likely feel bad for having asked in the first place if you let them down.)

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Don’t underestimate the importance of this structure once you have it. You would not believe how many times I have heard about someone with autism being late to an appointment by even just ten minutes, simply because they forgot what time it was or got distracted. And then their friends are upset that they ignored them all day after promising they’d come over! Now obviously, your loved one is not doing that on purpose – but if something so small can cause so much trouble, imagine how nice it will be to avoid those situations in the future by doing things at scheduled times instead of whenever works for you and not everyone else. Besides, your friend will still appreciate the fact that you care enough to show up at all!

(If you’re hearing about all of this and wondering why your loved one’s caretakers didn’t mention any of it before, don’t worry! Usually, people with autism will realize that their behaviour is inconvenient to those around them as they grow older. And like anyone else, they should be able to learn whatever skills they need on their own.)

So how should we make sure we can talk about these issues?

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First off: Patience. Second: Be Clear. If the person you’re talking to isn’t understanding something or really doesn’t want to cooperate (in which case: “You don’t have to do anything I ask!”), then let them know that. Don’t just ignore it because you think you know better! That’s actually the worst thing you can do.

Don’t hesitate to talk about I am Autistic, especially if it’s relevant! It might seem strange at first, but your loved one might be relieved that you don’t just think of them as “your friend.” And remember, none of this is anybody’s fault – everyone does their best with what they have. So let’s all make this easier for each other by learning how to work together.

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