Maybe I Just Want You to Understand Autism

It is 5 am at my house. I am up to get a head start on my day, catch an early yoga class. OK not really. It is not that evolved, progressive or interesting.

I am up because my son woke up at 3 am. He woke up giggling and has been playing his keyboard on repeat. He has been running up and down the halls, flicking lights on and off, laughing, giggling and playing like it is the middle of the day. He is happy; this makes it feel less like 5 am for me.

Since 3 am I have read several articles, some of my book, watched Netflix, over thought several things, had a snack, looked at my face in the mirror and decided I need Botox so I look “sort of” less tired and now I write.

No sleep (sleep issues) with my little guy have probably been the hardest thing to deal with in regards to his autism.

I have become tired of telling people I have had little sleep because it has gone on for a long time now. It has become part of my reality. I am tired of being given advice on how to “fix” his sleep issues from people who don’t live them. My body is beyond fatigued currently. It aches, simply because it hasn’t been getting enough time to rest. I hurt all day right now because my body is that tired.

I have been up many nights lately. There is a part of it that has oddly become the easier part of my day because as much as I would rather be sleeping, it is quiet during this time. I don’t have to deal with anything else except my son and just being awake. When you have to deal with other adults and real life it seems more exhausting. Your child being awake and meeting their needs comes naturally, you just do it without much thought. For me at least.

My son will fall asleep eventually, probably between 6-8 am. I won’t go back to sleep though because my “other” adult responsibilities begin.

Sleep deprivation is a weird thing. It strips you of many things. When you are physically pushed you have to focus on where your energy goes or you burn out quickly. You learn who/what drains you or fills you. You have to adjust daily and often people will not understand the reasoning behind this. I am too tired to explain it to them.

The less sleep you get the more isolated you become. When you are tired and have so little energy you don’t have space for many people or things. Simplicity becomes a necessity.

You use your time to restore yourself in every way you can. Making plans like normal people do is one of the first things that is taken off your plate. New people in your life typically don’t understand this, they take it personally. People who have been in your life prior to kids understand but because your lack of time to nurture relationships they drift.

So you sit alone at 5 am and write about it. Which I am still not sure is overly healthy either? Writing often feels like yelling in to a cave. You can shout all you want but the only voice you hear back is your own echo. I don’t think our own echo is the company we need at times.

Often when I am out with people now (especially newer people in my life) I think to myself they have no idea how tired I am and that me just showing up, taking time is actually a big deal.

I then remind myself I am really tired and my reality is no longer relative to most of the people in my life. It is not part of their inclination nor obligation that I receive a celebratory plaque of honor for showing up.

This whole sleep thing has been hard. I have been maxed out physically. When I start to say to people I am really tired, it typically isn’t a great thing. It means I am beyond cooked. I know my mind and body well and when I say I am “just so tired” with the flat affect that I am saying it with; it means I am about to go in to basic function mode. My reserves are drained and I am running on fumes.

It is an awful feeling to be honest. It is not anything that is explained to you when your child is diagnosed with autism. They don’t let you know that the 3 am wake ups are possibly going to be your reality for a long time. No one tells you hey go out and build a really great team because are you going to need it. Nobody tells you that because of this lack of sleep thing your entire existence is going to change as you know it.

It becomes a back alley fight between you and sleep deprivation. It is hard.

My son is giggling less, he is getting tired now. It has been one more night of what has become the norm for us. I will go about my day, as I do. Most won’t have a clue about my night and how fatigued I am.

I will be expected to show up, physically, emotionally and mentally for every aspect of my life. No person will magically take over so I can rest or take anything off my plate. There will be no gratuities given or a lap to rest my worries on for even 5 minutes. It will be a quiet reminder for me to keep going because if I don’t, there is no backup.

When I write about things like this I often wonder why? Maybe it feels a little less like an echo in the middle of the night. Maybe I want people to understand that autism can come with a bunch of hard things that you probably don’t know about and I want you to understand. Maybe I just need rest.

Written by, Alisa Hutton

Alisa is the Mom of a great little guy with Autism and when not giving him her loving, she works as an Autism Coach and Inclusion Consultant and a contributor for several online publications. You can follow her journey at https://alisahutton.com/ and on Facebook.

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