Autistic Exhaustion

Being autistic brings various challenges and joys with it. I adore my hyper-focus and passions, but I loathe the inevitable misunderstandings and sensory bombardments.

I am a carefully balanced human. I know that things that won’t be stressors to other people will be problematic for me. I know that spending time in a group will be exponentially more difficult than spending time with people one-on-one. I know that I will always have to ‘perform’ to some extent, when I’m communicating with most non-autistic people.

When I am home, with no pressures upon me, I am energised and busy. My whole life is made up of projects of different kinds. I will have various things on the go; spreadsheets, DIY, wine-making, crafting, poetry, prose, gardening, art.

The idea that I am lazy or inactive seems anathema to who I truly am, and yet this was a label that stuck to me for a long time. It’s a label I hear other autistic people share too.

Why are autistic people so often accused of laziness? Why is it something that haunts us so?

Because of the exhaustion. It is my greatest and most enduring foe. I learnt to mask early on, and masking is an exhausting method of communicating with the world (even when it’s effective).

Imagine if I told you that tomorrow you must pretend to be someone else. Pretend to be Bob. I’m going to give you a portfolio about Bob – his likes and dislikes (they won’t match yours), the things he likes to talk about, his favourite phrases, his accent – I want you to research Bob, memorise it all, and then I want you to pretend to be Bob forever. I want you to be Bob in every interaction you ever have from now on. Well done, you are Bob, you now have a constructed mask.

None of being Bob will feel natural to you, but as time passes it will get easier to be Bob. You will feel frustrated by always having to reach for your research during interactions, instead of reaching for your natural answers, but that’s not important. You are Bob now. Bob is the only hope you have of being a part of the world.

At the end of each day you will find yourself exhausted. It won’t just be the concentration needed to move and behave like Bob, but it will also be the tension in your muscles from holding yourself how you think Bob should hold himself. It will be the tiredness found in the anxiety of getting things wrong – and you will get things wrong. Your version of Bob will need constant revision and improvement.

The exhaustion of autism is my biggest difficulty. It is not inherent in the autism itself, it is built out of how the world works. I know this, because when I am at home, in my routine and structure, in my safety and joy, I do not suffer with that soul-sapping tiredness.

It takes time from me. It takes recovery time I don’t want to give. It means I have to plan to rest after events, whilst watching other people jump from one thing to the next. It means I struggle to attend every talk at a conference, no matter how interested I am. It means I have to take a break, when I desperately want to keep going.

It’s the thing that makes me want to say, ‘It’s not fair!’ Because it’s not fair. So many unnecessary things steal my energy; someone not letting me know about a last minute change, things not happening when they were due to happen, people not saying what they actually mean and assuming I can work it out. So many avoidable things steal my energy – none of them malicious or intentional, but the result is the same regardless.

One day, in the not too distant past, I was too exhausted to pick up milk on the way home. I berated myself for it (I wanted a cup of tea!) but I knew it would take more than an hour’s recovery time to fit the change into my routine, and I didn’t have the time.

My husband bought milk on his way home. I was unutterably grateful. He was bemused. From my point of view he had saved me more than an hour, he had done what seemed like a huge task to me. From his point of view he had spent five minutes on it, and it was no big deal.

We were both right, and it’s still not fair that something so small can become so big to one of us. But then he can’t achieve what I achieve with hyper-focus. He can’t write ten thousand words on a good day. He can’t look at a window, decide it needs hanging shelves, and have them made and up by the end of the day. He can’t look at an old piano skeleton and see a frame to grow flowers up. These things would all take him a lot longer than they take me. That’s not fair either.

Exhaustion is not spoken about nor researched nearly enough when it comes to autism. It can be one of the most debilitating things. There have been times in my life when all my energy (and I mean all of it) went on work and commuting. I would get home and go to bed to wake up tomorrow and do it all over again. It wasn’t life. There was no joy and every spare second of my time was spent on recovery.

It’s one of the reasons we need work that feeds us and environments that don’t drain us. Working at our passions is one way to do it – our interests feed our energy levels rather than draining us.

One of the most important things since learning that I am autistic, has been managing my energy levels better. I plan recovery time. I plan time to do the things that feed me. I will always have to consider these things and work at them, and that is frustrating (I’m not going to pretend it isn’t), but I can’t change that one aspect of myself, and it’s so much better to know and understand, than to pretend and to burn out.

I’m not Bob. I’ve never been Bob. I don’t want to be Bob; he’s too two-dimensional. I am a fully functional person experiencing the full spectrum of humanity, as flawed and perfect as the next person. I just need to recuperate at times, and that’s okay, even if I do have plots and plans. They can wait. I can wait. I’ll be back sooner if I do.

Published by Rhi

59 thoughts on “Autistic Exhaustion”

  1. What you describe about needing recovery time and having to plan things out is a lot like what I have to do because of my fibromyalgia. I can totally understand how grateful you were for your husband bringing home the milk. It is completely awful to have to plan rest periods, but we can be mad or we can plan and enjoy life on our terms.
    As a side note, I don’t think all those people who seem to have no problems are really doing as great as they may appear. We’ve all been pressured by social media to believe we should always be shiny happy people.

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    1. Wise words!

      And yes I think there are many conditions that bring the frustration of exhaustion with them. You’re quite right. Having people in our lives who understand and to share the load with can make all the difference.

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    3. I have found much commonality with those with chronic illnesses or various types of ptsd. Anyone who ends up with extremely limited resources for living for one reason or another. Either not having them to start with or having the majority used up in some way the majority does not have. We end up with a large overlap in understanding and coping mechanisms.

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      1. This morning I was thinking about this, after having been wiped out all of yesterday after a morning appointment, and I was thinking that the map of connections and repercussions and possibilities that I am trying to trace out in my head is just too large to fit.
        It’s almost like crashing after anything happens is swap the memories out so I can switch back to something else, but it gets hard because some of the needed feelings and memories and ideas that I need to connect to gain peace are in different blocks and I rarely have them at the same time.
        Which is why talking to people with similar issues can help because you can use their experiences and the lego pieces currently in their heads to help complete the puzzle and put it together.
        I’ve found a lot of times in my life things will get more and more and more complicated and my fatigue will grow and overwhelm and then (somehow, sometime, eventually, hopefully) a breakthrough will trigger and the complex models will self simplify and I’ll suddenly have space again. (For a time.)

        So I’m wondering if I can start planning ahead better ways to map out huge issues I can’t hold in my head all at once, better ways to interact with others to perhaps find the missing pieces I’m looking for. (Twitter autistic folk have been a huge part of getting me through the last year.)

        And I’ll write this down here and possibly reread it tomorrow when I have an entirely different map of thoughts and perhaps something new will emerge.

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        1. Finding our own patterns is incredibly important. I have to respect how I work as I have more than enough experience of carrying on and carrying on and then burning out. To avoid that I have to take time when I can, and find the things that help me recover more quickly.

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  2. Thank you for describing your autistic exhaustion. It really helps me to better understand my 19-year old son. Since my son was 3- years old, we tried to prevent him from reaching “sensory overload.” The way you described your exhaustion goes deeper than just over scheduling. Thanks!

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    1. You are very welcome. Recovery and processing time is such an important thing, and having people around us who understand can make a real difference

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  4. I am really struggling with this same thing. And for a decade now, since my divorce. Seems like every time I try to talk to someone about it, they abandon the conversation. Just flat out ignore me. They’ve also all been NT’s.
    I can thrive and flourish in my home, working on my art and being at peace in my space. But how on earth can you survive, when you live with someone who seems to be bent on creating noise and chaos and constant interruptions? This is my current living situation (had to move in with my mom, after my x husband ruined me financially and left the country). I also have bad ptsd. So, the combination is ruinous. I just don’t know what to do anymore. It robs me of creativity (which is my life blood), of energy, of being productive. I’m literally always recovering. I just don’t know what to do anymore. My need for peace and quiet, is huge. Voicing my needs, seems to only bring on more of what I don’t need lol.

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    1. I’m so sorry, that sounds so hard. Could you show your mom some information about the damage that change and a lack of routine can have, or would she not listen?

      One thing that does help me is finding somewhere peaceful outside. Depending on where you are, is there somewhere you could go when you need to build some energy? Ideally take your art too, but I know this isn’t possible for everyone.

      I hope your situation improves soon 💐

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      1. Thanks for responding.
        I used to tell her the details about me… what helps me, what destroys me, etc. Nothing changes. She used to be gone more. But now my alone time is almost zero. Saying it’s hard, is an understatement.
        I used to go outside a lot. I have property here. An acre. And I live in a rural area. But all the peace has vanished in this area as well. We have 3 new renters on the next street… all our yards share a common fence in the way back of the properties. They all have 2 dogs that live outside. And those dogs do nothing but bark almost constantly. It feels like a bad joke, where there’s just no escape. So I have taken to isolating myself in my little bedroom. It’s called survival.
        I’ve been living like this for a decade now. Tried everything I could think of to make things better, to make change, etc.

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        1. Could you maybe sell that acre and find one that is more remote? Or just a spot to go for a walk in away from everyone.

          I really hope things get better for you 💐

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          1. I am actively now looking to move. That in and of itself, is overwhelming and exhausting. I have to add that on top of all yard work, all house work, running my business, etc lol. No one helps me so, it’s my job. We’ll see what happens.
            I do know I need to get out of here. It’s changed so much since I first moved here. It was so quiet. Then people change. Some renters move and new ones come in. The next door neighbors I’m having trouble with right now, are older. The man is around 80 and his wife is a few years younger. He had a stroke a few years ago, and since then, he’s having some delayed mid life crisis. Bought a little sports car and one of those fancy Harley Davidson tricycles. He dresses like one of the Village People and bullies who he can get away with bullying. Very passive aggressive. I had contacted him last year, about his RV guests that come periodically. Asked him if he can park their RV on the other side. They have two big driveways. Instead of right along my fence. His response sounded like a whinny teenager, when asked to do something they’re too lazy to do. He’d have to move something. Poor baby. Yeah, anyways, I’m done with them. I guess if they put it on the other side, it would be as close to their bedroom window as it is to mine and it might keep them up all night with the noise lol. People are awesome.

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        2. I have recently had to start walking out of the house and sit in the car with my headphones and phone to cut out the world. If I stay inside I’m still surrounded, but the car is like a mini bubble of it’s own.
          Doing it in your bedroom works at survival level, but it also endangers it because there is only the _one_ place now and everything is tied to that including your basic needs.
          Do you have a small shed on the property or a car (even a non-working one!). It’s a shame just the outside doesn’t work anymore now it’s been built up a bit. I’m in the city and going outside doesn’t work (unless it’s at 4am!) but the combination of the car and the noise-cancelling headphones make a functional bubble for me (for now).

          Is there a library in a town not too far away or a less developed area 10 minutes walk away?

          I hope you can find something that works…

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          1. Nothing in walking distance. I used to love to walk, too. Can’t do that here unless I drive somewhere first, then walk. Too much hassle. So I just do laps on my property when I’m able to.
            In the meantime, I did get some noise canceling ear muff head phones. Those are really great, and only 11 bucks. The thing I do not like about them is they amplify my pulse. It’s almost a bad joke lol.
            No shed to use.
            I do go outside before the sun comes up. I just cannot wander around my property anymore, because of all the dogs that start barking now. It never used to be like this. But now it is. And those people just let them bark nonstop.
            Lately (the past two weeks), I’ve been making a fire outside in the morning really early, sitting out there to read and watch the fire. Then my neighbor (who used to be decent, and now is not), has guests with the biggest RV I’ve ever seen. They park that thing right on our property line and it overlooks my entire front yard area. This is where I usually hang out. They run their air conditioner the entire time and it’s so loud. It just feels like all the walls are closing in on me and my bedroom is literally the only place people can’t come in and invade. I’m trying to make the best of it.

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  7. Some people think I’m strange, but having CIDP (a neurological disorder) is actually a blessing for me, as an autistic person. It means I have to pace and plan things much more carefully and take much more time. When I’m sitting reading a book or doing something on my computer, I’m fine. When I’m driving Shigemi (my car) or sitting with Nutsy (my cat), I’m relaxed. When I’m doing a task, and my mother talks to me while I’m trying to concentrate, I can meltdown, because I can’t do two things at once. I wouldn’t swap my autism for anything, but I find my CIDP helps when people don’t understand my autism.

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    1. I’m glad it helps people understand. I know what you mean about not wanting to swap your autism for anything. Thank you for sharing your experience with me 💐

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  8. Thank you so much for this! My husband has Autism and he comes home from work and sleeps 13-14 hours a night at times. I have a husband with Autism, a daughter with Autism, a son with Autism, and a son with Type 1 Diabetes. My husband shuts down quite a bit and I have never been able to communicate how much I wish I had time to shut down. I feel like I’m constantly trying to help everyone else manage their anxiety and interactions with the outside world and it feels like my husband and children with Autism don’t understand how difficult it is to keep all of them going. Do you know of any way that I could help to explain this to him so he would understand? I try to tell him exactly this and his sleep and his retreating I understand are important, but if I go down….he is going to be screwed. He just doesn’t seem to care. He just goes to bed.

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    1. That all sounds really hard. I would love to say that I have all the answers, but that would be overreaching.

      When it comes to family life, as a parent, you always have to put your children first. When I am exhausted, I still need to parent my children. There are times when my husband is happy to take them off and let me rest, but that is a part of a relationship of give and take where he gets downtime too.

      If you are getting no down time, then that is unsustainable. We all need space for ourselves at times. Just because I find more things exhausting than my husband does, doesn’t mean that it would be fair that I could leave him to do everything at all times.

      Can you think about what would help you and structure what you need? If it’s half an hour to yourself at the end of the day – before he goes to sleep – then could you ask for that time? Discuss how much time you each have when you are not responsible for the children, and how that could be balanced so that you get a break too. It could be that some time at the weekend would suit better, or five minutes here and there, but it is more than reasonable that you should have balance in your life too. Relationships and families involve compromise and generosity. His tiredness is real, but so is yours, and at some point you will get to your limits.

      Sometimes if I’m shattered, I stick my noise cancelling headphones on to supervise the children. That way I can be there, but not suffer a sensory bombardment to the same level.

      Write it down – the division of labour and time for both of you. Tell him this is not sustainable. Tell him what you think would work. Discuss options as a partnership. Be clear about what you need. We all have to give of ourselves to our families, regardless of neurotype. Best of luck

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    2. How do you even do that! I have one autistic son and I get exhausted! His bio father was abusive (in retrospect and with the knowledge of my sons challenges, he was challenged) left me with PTSD. Which gives me exhaustion at times, also because I’m not good at stopping in good time. I’m the Energizer bunny untill my battery runs flat 🤣 anyhow I don’t know how I’d do it all without a supportive husband at my side! That said and knowing autism I’d say it’s not that your husband does not necessarily care. Ignore can definetely be a strategy if you can’t reward a demand! The knowledge you present to him and the consequence you lay out may just be overwhelming. You may have to break it down into smaller specifc pieces of your needs, manageable for him without adding the “everything is lost” prospect of “if you go down they’re all at a loss”. I know my son would give up at that prospect. He’d think all was already lost before he even tried!

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  11. This was insanely relatable and extremely well written. You described everything perfectly and it is a relief to read all of this coming from someone else. I didn’t find out I had autism until I was in my thirties. I had been practicing and perfecting Bob for my entire life. I recently decided to put Bob away and life has been so much better. My only regret is that I needed a diagnosis and label to finally accept who I am.

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    1. I was exactly the same. I never gave myself a break until I had my diagnosis. I was my own worst enemy. Knowing how Bob works is helpful; trying to be Bob is not. Thank you for your kind words 💐

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  12. I’m beside myself with trying to figure out my 14yo son’s morning ‘paralyzation’ so I posted on a closed FB parent site and a great ASD parent advocate sent me this link. How serendipitous you posted this today! Thank you so much for the energy you took to do this!
    If he doesn’t go through his long morning routine (which is basically chilling out before school) he can’t function. He literally curls up in the fetal position, covers his eyes, plugs his ears, and won’t get up. It gets to the point where he mumbles, then can’t speak at all. It also happens if I ‘spring’ something on him- like we are having guests, or the doctor can only see him now, so we have to go.
    I’ve tried reasoning, and he’s all logical, so this is not something he can control. I won’t be punitive with him. This is not defiance or stubbornness.
    I know the more I push him to get up, the more he shuts down, but school starts when it starts! It’s a catch 22. This is gravely affecting his schooling, and now things he really enjoys like marching band camp this week- from 9a to 8p!, out marching in the sun, with noise, with bugs, and people he doesn’t know, and other people’s food… My friend called it a Sensory Hangover and that makes perfect sense with what you shared.
    As an ASD parent, once you figure out something (in their world), something new and mysterious comes along, lol. It’s never ending discovery of how their mind works!
    If you have any more suggestions on how to mitigate this, I’d love to hear them. I’ll make sure he’s up in time to do his morning routine, start his own calendar so he can see what’s coming up for him and the family, and go back to actively lessening his sensory input at all times.
    Thanks again for your post, and your blog. It’s so helpful for us mere mortals who want to understand and support our kids world.

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    1. It is so lovely to hear from parents who are really working to understand and support their children in being who they are. It makes all this worthwhile.

      Personally I wake up really early (but this may not suit him). I’m usually awake at least two (often three) hours before I actually have to be anywhere. This gives me time for my planning – running through in my mind what I’ll be doing that day and making sure I know what’s going on. This is a quiet time for starting slowly and going into the day on my terms. It does mean not staying up late though and will depend on how his body clock works.

      The worst thing about being a teen is you’re also growing and changing and most teens are exhausted by that too. You then have the additional exhaustion of furiously processing everything (sensory things, communication, change) and it can feel like there isn’t enough time in the day to recover.

      You’re absolutely right that it’s not defiance, but if you can change that pattern so that it can fit better with schooling, the stress of missing things and being late will be relieved and that will also give him energy back.

      It will get better. Marching band camp sounds utterly exhausting, but if it’s something he loves then he will be feeding another part of himself, whilst exhausting himself too. Doing things we love is incredibly important – and worth the exhaustion. I get sensory hangovers and social hangovers.

      Whatever happens you sounds like a great family. All the best.

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  13. Hi, I was diagnosed a few months ago aged 56 after a devastating few years. Reading your blog was like looking in a mirror. It has helped me to apply strategies to managing chronic fatigue and more importantly to accept that self care has to happen in order to establish new routines and a sense of hope and achievement. Thanks so much for helping me to see that it’s not too late to find my tribe. Bob has gone, he’s not coming back ! X

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    1. Hurray! Bob never deserved you. It’s such a huge thing to learn how to be kind to yourself (the real you, not the Bob version – there’s no point giving Bob what he wants because it won’t suit you). Welcome to the tribe. It’s an incredible thing to find out that you’re not alone, and you never really were 💐

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  14. It seems to me another reason why women are not diagnosed with autism as much as men is because, as you note, we feel more comfortable in a closed environment at home (as long as we have a well-functioning home life, of course). For a long time that was perfectly acceptable for women, but now of course women are expected to work outside of the home too. I guess this is one of the challenges of modern womanhood, though of course I’m glad there is more equality between the sexes now.

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  16. Pingback: Autistic Exhaustion - Centrum Spectra

  17. Thank you so much for sharing. I am still learning about autism, as I have a 16-year-old that is on the spectrum. His energy levels are low, so thank you for helping me to understand his issues 🙂

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  18. I have never read anything that describes how I feel so well as much as this article, I generally feel very isolated and this makes me feel normal and less like Bob… Thank You

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  19. I know you write this as an ASD adult, but I see much of what you say in our new diagnosed 2 year old great-grand. After a full day of the world as it is, she often needs another full day to regroup from it…and, we most certainly strive to allow her that time. Even as a non-autistic person, I need downtime after peopling too much.

    Thank you for your insight. It helps me feel as if we actually doing something right in helping my grand and her sweet ASD girl learning to navigate this child’s world.

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    1. It sounds like you’re already responding to her needs beautifully. It’s lovely to hear. I’m so glad my words help 💐

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    1. You are so welcome. Becky works just as well. Less Becky and Bob and more Shelly and Rhi, that’s what I say 💐

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  22. My husband and I struggle to get our three autistic children to do homework. We’re never sure if in their minds learning is at school, not home, or something else. I think that they partly want to do none school things and get fixated on that. The exhaustion felt from having to be ‘social’ is also a factor. When my eldest left primary school they had the leavers play, leavers disco and summer fair on three consecutive evenings. By the time of the summer fair, she just wanted to be at home – she was all ‘socialled’ out. Two years later, she managed her younger brother’s last summer fair. She did really well. She finished school at lumchtime, went to McDonald’s with friends, and ordered her lunch at the counter! Amazing acheivement. She then spent the rest of the afternoon in bed giving herself the best opportunity to make the fair. It worked!

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    1. Three consecutive evenings is a lot! It sounds like she’s learning to manage her energy brilliantly. It can be hard to get into school-mode when you desperately need time to recover. I know one of my children prefers to spend their lunch break doing homework to reduce doing so much at home. Sometimes having a structured routine can help – home, an hour of nothing, half an hour of home work, then rest. The unstructured nature of it can be a problem too.

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