Aspects of Aspergers

perspectives from the spectrum

Asperger Syndrome and fatigue

Posted by capriwim on December 23, 2010

A couple of years ago, a guest lecturer came to college and gave us a lecture about Asperger Syndrome. Of course, I already knew all about Aspergers, so I sat there internally nodding and smiling, as I recognised all the things that were talked about, and found it half-amusing and half-disconcerting that what we were learning about potential clients actually applied to me too, and that I knew more about it than what was being taught.

Then the lecturer said something that made me stop and think. She said that people with Asperger Syndrome experience a great deal of fatigue, because they are always conciously processing things with their intellect, as their brain doesn’t do it automatically.

Now, in all the books and articles I’d read about Asperger Syndrome, none of them had mentioned fatigue. Many had talked about the act of processing things by intellect, but none had talked about this causing fatigue. But now this lecturer mentioned it, it made so much sense – and explained so much.

Fatigue became a huge part of my life when I lived in Canada for a few years. I went there at age 21, after completing my first undergraduate degree. Before that, I’d been a very solitary person, not really having a lot of awareness of what was going on around me, and not really needing to. I spent my time reading, in a world of my own. But when I was doing my undergraduate degree I started to realise that I wouldn’t survive in the world if I continued like this. I needed to learn social skills. So this is one reason I went to Canada, so I could have a new start, in a different country, and try to learn how to be social there.

In fact, being social almost became a special interest. In the five years when I was in Canada, I put my energies into socialising with anyone and everyone. I had observed social people when I was at university in England, so I tried to imitate their behaviour when I was in Canada. I put aside my books, and people became my focus. I was chatty, jokey, and took any opportunity to go out to various social things. I found it quite new and exciting – I’d never done this before, so it was fascinating to observe how people responded to me. I enjoyed analysing everything and trying to work out social norms, although I often found people very confusing.

I realised that I had a big advantage in being a foreigner, because I could tell people that I was from a different culture and ask them to let me know if I was being rude in any way. People explained the etiquette of their culture to me, which was useful, and they often excused all kinds of oddities and faux pas on my part, because of the fact that I was foreign – an eccentric Brit, as they saw me.

I found it fascinating and fun, but after a while I noticed something strange started to happen. I would get incredibly tired throughout the day. I’d go out with friends and find myself falling asleep instead of chatting. If ever I went to anyone’s house, I would invariably fall asleep on the sofa.

Now, I am not very good at being aware of my bodily needs. This is something that can sometimes happen with the autistic spectrum – difficulties being aware that you are hungry, for instance, or that you are tired. But my tiredness had finally got to such a threshhold that I couldn’t be unaware of it – especially not when I was actually falling asleep during the day, every day, despite having had more than enough sleep at night. I went to the doctor, convinced that something was wrong with me, but blood tests all were normal.

The tiredness only lessened when I spent a lot of time alone. I observed the same when I returned to England. The jobs I chose were all working with people – because I wanted to learn how to do this – and whenever I had days off work, I would spend the time alone at home, completely exhausted, sleeping a lot. I made myself do overtime a lot, to save money, and would get even more exhausted, and often have to take time off sick, because I would become dizzy and unwell from the mental overload.

I didn’t understand what was happening. I went to the doctor and asked what was wrong with me, and told him I want to be able to do overtime without getting sick, and he just shrugged and said that some people’s constitutions are such that they can’t do that. This had never occurred to me. I thought that if others could do it, so should I be able to. And it did seem to me that my tiredness was not normal, compared with other people.

Of course, I don’t know the experience of other people’s tiredness, only my own, but I know for myself that when I’m very tired I seem to be shaking internally, and my brain seems to stop functioning. I notice this happening when others seem to be functioning fine, and they are merrily chatting with each other and making jokes and doing all sorts of communicative things, whereas I have stopped communicating, or limited it, because it’s too much work. But of course, such communication isn’t hard work for other people, because it’s automatic for them. If the task were switched, and we were given algebraic or geometrical problems to solve, by ourselves, in a silent, darkened room, then maybe others would be tireder than me.

Anyway, in my life I have pushed myself very hard, because there were always lots of things I wanted to do. But it seemed I never managed to get done even half of what I wanted to. I never managed to get up as early as I’d planned in the mornings, or to do what I’d planned to do during the day. I thought it was because I wasn’t trying hard enough – that I was lazy.  I knew what I wanted to be doing, and it seemed to me it was possible to achieve it (I made neat little timetables of how I wanted to use my time) and yet I never did.

It’s really only in the last year, since I’ve switched to part time at college and have a support worker, that I’ve come to realise that I don’t have the same energy levels as most people, and to accept that I need more rest and that it’s okay to have days where I do nothing – in fact, it’s essential. I’ve realised that the following things cause me a lot of fatigue:

  • fluorescent lighting
  • noise
  • too much going on around me
  • interaction with others, particularly those I don’t know well
  • travelling
  • change – different, new situations

Often I don’t notice the fatigue at the time – it’s afterwards, when I’m back home in my house, in the quiet, by myself, that I realise how exhausted I am from a day at college under fluorescent lighting, interacting with others.

Because I am part time now, I am very fortunate that I don’t have to go into college every day, so I can spend the following day resting. And so I can manage my tiredness. I felt horribly guilty about this at first – I would tell my support worker gloomily that I’d wasted a whole day when I should have been studying. But she would tell me that actually it’s good for me to have a day resting, and that this is the reason I am part time, because I don’t have the same energy levels as others, and I need to rest. So I have gradually come to accept this need to rest as part of my life, and I try to make sure I rest so I can manage my fatigue levels.

I do still struggle with all this a bit. There is so much I’d like to do. My brain is very active and full of ideas and curiosity and a desire to learn, and it really feels like a waste of time to spend time doing nothing much. But I know that this fatigue is a real limitation of mine, and I have to accept it and work around it, or I’ll exhaust myself completely and then won’t get anything accomplished at all.

It seems bizarre logic that to achieve more I have to rest more. But, bizarre as it is, I have found it to be the case, so I know it’s something I must go along with. And then, the more I rest, the more I am able to put my entire energy into interactions with people – because it does take a huge amount of energy and focus, to take in all the subtleties as well as the big picture, to express myself in an appropriate way, and then, ironically, to hide the fact that it is taking so much energy (because people don’t like to see the effort – they get uncomfortable if they think you are ‘intense’ or ‘trying too hard’)! Pretending to be normal is a tricky business!

About these ads

29 Responses to “Asperger Syndrome and fatigue”

  1. debra said

    What a great post…. I know about the flourescent lighting so if you can change lighting at all in your environment and just use lamps that might help a bit….bc you are always having to think on your feet it will wear you out mentally which manifests itself in physical ways. I hope that your increased knowledge might help you some. Thank you for sharing this.

  2. Makes sense. I was off work for a year in the early 90s with Chronic Fatigue and Immune Dysfunction Syndrome which is a fancy way of saying, “knackered”.

  3. sherryl-annette snyder said

    From somewhere around 10 I couldn’t get to sleep deeply nor could I wake up. Makes it hard in school. My window of awakeness was more like 9:00pm to 4:00am. But I tried. Everything was tried. Except having school between 9:00pm and 4:00Am. Daylight come and then I slept soundly if left alone.

    Does this fit in anywhere with anybody? Now in my late years I am awake. Maybe with 5 hours sleep.

    There were the times when I normaled out and was awake and Alive. That was when I was pregnant. If I could have spent my life pregnant I would have had more alive wake time.

    • capriwim said

      I also don’t tend to sleep deeply. I find it helps if I tuck my duvet in really tight – the pressure somehow relaxes me. Also it helps if I listen to theta waves before I go to sleep. I keep meaning to write an entry about my various strategies – hopefully they will be useful to some people.

    • Tam said

      I’ve tried over and over to pull my daily schedule around to something approaching normal, but it always rights itself to something like a third shift, where I’m going to bed sometime in the early morning and getting up in the late afternoon. I’ve finally stopped trying, and I just live this way. Because of other disabilities I stopped being able to keep a real job a long time ago anyway. Now my schedule just annoys my family members and friends lol

    • Sparrow said

      “Does this fit in anywhere with anybody?”

      Go to Wikipedia and read the entry for “DSPS” or “Delayed Sleep Phase Syndrome” and I suspect you will see a lot of yourself there!

      Circadian Rhythm Disorders are much more common on the autistic spectrum than off. I have a CRD called Non-24-hour Sleep-wake Syndrome (look up “N24″ on Wikipedia if you’re curious) and it’s quite difficult to try to build a life around it.

  4. Dith said

    Hey, found you here now!

    I have been diagnosed with Fibromyalgia recently, which has fatigue as part of its symptoms. I have not (yet) been diagnosed Aspie, but am sure in my own mind. I relate to the internal shaking thing, and have only heard one other person describe that – and she has Chronic Fatigue.

    Came home from my first full day back at work today since Christmas, and was absolutely wiped out. Slumped down for at least half an hour before I could even conceive of putting the kettle on! I work part-time also (full time work having all but finished me off) and in a very people-centric job. I am wondering if the holiday break meant that my ability to cope with such a level of sensory input was reduced thru lack of use. Something to think about, perhaps…?

    Thanks for posting this. It helps to make sense of things to me. I like the explanation of the way rationalising can wear you out. Have you ever been told you ‘think too much’? I have, many times. It is all I can do not to suggest that the person telling me that thinks too little! :) It is a mixed blessing, I believe, but I am beginning to be okay with the person I am in a world that works very differently, on the whole, to the way I do!

    • capriwim said

      Hi Dith.

      Yep, people often tell me I think too much, and that I should just enjoy life without analysing it – they don’t realise that if I don’t analyse, I don’t process and nothing makes any sense. I need to analyse to function.

      And yes, it’s harder to deal with lots of sensory input when you’ve been away from it. Although it’s always exhausting, my body just gets used to being constantly exhausted, so I am not consciously aware of it, but I’m just at a lower level of energy all the time. And then when I have a break, then I’m at a higher level of energy, so if I go back to having lots of sensory input, then I notice it more, because it’s a change of state to low energy and exhaustion.

      Incidentally, I’ve heard some people say there is a link between fibromyalgia and autism. It seems there is a higher incidence of fibromyalgia in relatives of those who have autism than the general population (and anecdotally, my sister has fibromyalgia), but I haven’t read any studies on this – just heard people say they’ve heard it.

      I do find that how people with chronic fatigue describe their symptoms is very similar to what I experience, and they say what I describe is very similar to their experience.

      • Dith said

        If I ever go back to studying, I would love to research the links between depression/fatigue conditions/autistic spectrum disorders. Also the affect of diet and environment (toxins etc as well as social environment) upon these conditions/syndromes. I have variously been labelled with depression and fibromyalgia – but have come to the conclusion that root of all my ‘issues’ is probably AS. I have noticed the large crossover between symptoms in all these cases. Perhaps many people diagnosed with depression, FMS etc have AS type-brains (for want of a better way of putting it) and this means that they develop the other conditions.

        The thing I find most acceptable about the concept of myself as Aspie, rather than depressed etc, is that it is just the way I’m made. Not something to be fixed or healed, simply understood and worked with. Even celebrated in some instances (there are some things that people on our spectrum do better because of the way we are wired, after all!) I wonder how many others out there are trying to find ways of being healed of symptoms of illness, rather than discovering that they are, in fact, living in a world where most people approach things so very differently.

        Thinking out loud again. As I do. Thanks for listening! :)

  5. Anne-Marie said

    thank you for posting this. My dad has symptoms of Aspergers and my brother is autistic. I’v wondered all my life why I have such difficulty. I was always the relatively “normal” one. I ended up getting into very stressful situations working with abusive authority over me when trying to care for very low-skill level autistic children and adults. Its SO SAD. They say they care about people with “disabilities” but they USE them and control everything they do. I stood up to them…they threatened, slandered, and mocked me. My prayers are with everyone who struggles so hard with being “different”. I wish we didn’t have to change so much and “normal” people could just be more LOVING! Thanks for listening to this! Anne-Marie, who just realized she’s on the spectrum.

  6. Jennifer said

    Thanks so much for the post, I am an Aspie over 50 and have just started a great job, which involves meeting new people, I notice that I can cope for two hours before my mind just starts to switch off, I really try to stay focused. Meeting people and trying to read them in the social spect is just so difficult. Today I am at home and am not dong anything other than telling myself how lazy i am.
    Thanks to you I will go with the fatigue.

  7. Ruth Attias said

    This was interesting for me. I have a 14 year old son who is beginning to suffer from day-time fatigue, and I am at a loss to know just why, and worry what I could be missing. When my son complains of not being able to function because he is too tired, sometimes helooks very tired, sometimes he doesn’t.
    Should he try to push through it, or not. If he doesn’t,and rests, it affects his night’s sleep.
    Any other tips on what might help??

    • capriwim said

      Thanks for your comment. I can’t really give medical advice, because everyone is different, and also fatigue can be caused by all sorts of things, so it might not necessarily be just from Aspergers. I would suggest taking your son to the doctor and checking that there isn’t anything else causing fatigue, and getting the doctor’s advice. Good luck.

  8. Susan said

    Thank you so much for your story. My boyfriend has Aspergers–I’m certain of it–but he does not accept the diagnosis. Recently, it became clear to me that if we were to continue to have a relationship, he had to live alone and sleep at night alone, as he really “shuts down” when he’s tired. He doesn’t seem to have “degrees” of tiredness and even having me around (or anyone) when he’s tired is debilitating. The minute he says “I’m tired” he can do or think no more. I’m struggling to understand AS (in spite of his refusal to acknowledge it) so I can be a good friend to him. Your article helped me to understand what I sensed was going on with him–that it was part of AS.

  9. EDL666 said

    I noticed this too recently, In recent years, I’ve been trying to socialize more and more, but it seems that I get so tired that I lose the willingness to do just about anything unless there’s a severe threat at the end(like a lazy person) although I know that I’m not, simply because of all these efforts. I find it really hard to not feel guilty of trying to rest because that’s not how I was raised, and I like how I was raised… Anyway really cool post!

  10. I’ve had a few days off work because I’ve had a migraine & been really exhausted. I need an afternoon nap most days. I work part-time as don’t have the energy to work full-time. I was undiagnosed celiac for 2 decades, which resulted in severe fatigue, myalgia, depression etc. I have many food sensitivities eg gluten, palm oil & dairy lower my blood pressure drastically. I’m feeling so much better these days, but still don’t have as much energy as other people. I’m wondering if just a common Aspie thing

  11. Malik Stephen said

    Here’s something to try: B12 shots. They’re suppose to boost your energy significantly. I know what you mean. I love to socialize but my fatigue gets in the way. I’m really smart but fatigue blocks that smartness. It even stopped me from growing for two years now. Cortisol levels are off the charts for me. I would suggest Natrol’s brainspeed and B12 shots. They should help.

  12. I started becoming fatigued and sleeping more around age 10. During the years when I worked full-time, and sometimes overtime, I had enough energy for living only on parts of some weekends and during vacations. I managed life very poorly and people told me I slept too much. I retired at 56. I am still challenged by fatigue, but now have some time left over for living after resting and sleeping. I’m trying to catch up with all that I neglected during my working years, which may or may not ever be possible. I was not diagnosed with Asperger’s Syndrome until after I retired. Perhaps working part-time would have helped, but I didn’t even have a diagnosis. I still need a lot of sleep and naps and require my times of solitude.

  13. This is so very interesting. I know the boys always like to sit and do nothing when they are off of school. Sort of hiding in the man-caves, so to speak. They have no desire to venture out into the world. Now this explains alot. Thanks.

  14. ca57 said

    I am 54 years of age. I finally got a diagnosis of Aspergers in 2011. School and dealing with the NT world takes more energy than what an NT would experience. Being exhausted is the result of very hard work. Wanting alone time is the way we recuperate. Some people smoke, do illegal drugs, abuse others etc. My 30 years as a teacher has been rewarding, but the hard work to survive in the classroom and in the Nt world is getting more difficult by the day. NTs do not understand this. When to retire is my question. I don’t want to have to be a house keeper while my wife is at work.

  15. david Knight said

    What a great article by capriwim – it could be me.

    I was diagnosed with Asperger’s Syndrome in October 2010 at the age of 51.

    I find that I seem to need a rest on my bed almost every afternoon as I feel very tired. I work a few hours a week in the voluntary sector assisting children with literacy and after the sessions am completely exhausted. I know that I couldn’t return to working a 35 hour week as I did before redundancy in mid 2007.

    I was convinced until yesterday that depression was tiring me as I have a long history of this and am on medication, but after a chat with my Consultant Clinical Psychologist and visiting this website I now believe that my fatigue is caused by Asperger’s Syndrome. I can now accept that I have less energy than NT persons when undertaking tasks and for the first time in my life will not hold myself guilty.

  16. L said

    Really interesting article, you’re right that fatigue is not usually discussed much in relation to “symptoms” of AS… great post. I also find you to be very interesting, especially in the way that you so strongly worked at socializing and becoming normal and as you said, “being social almost became a special interest.” … I can definitely relate to the trying to be “normal” idea! I think what you said is very important though for people who clearly misunderstand AS who think that we don’t want relationships… it’s not that we don’t want relationships – we so do! – it’s a matter of how to actually go about doing that, and maintaining it, and all that stuff that is not automatic and can be very confusing for us on the spectrum. Thanks so much for sharing! You always help me understand myself and others who are (or may be!) on the spectrum much better! And that’s priceless, so thank you.

  17. tagAught said

    Very interesting. I know that I find I get tired more easily if I have to deal with lots of people – and yes, I agree that it’s definitely a response to the amount of processing and analyzing we have to do in comparison to NTs. Unfortunately, this is very much an NT world, and so it’s expected that we be sociable.

    I can cope with a certain amount. It helps if I deal with only one or two people at a time, because then I don’t have to divide my concentration too much in order to analyze and interpret their body language. Three people? My body language translator – which relies on my intellectual recognition of signals, rather than the instinctive recognition NTs have – gets overwhelmed, and can’t do anymore. It’s too many divisions of concentration, and too much energy.

    And then, there’s the amount of time spent with the people. It’s easier to read the cues of someone I spend a lot of time with, because in many ways, I think my intellectual understanding of those cues is probably based *on* those people. With strangers, it can cause a lot more stress, because their cues aren’t *exactly* like the ones I’m used to, so I have to find the best approximation and assume.

    Then there’s the other time issue – how long you have to spend being social. If I’m in a crowded or semi-crowded environment – even if I’m not dealing with anyone directly – I tend to be exhausted when I get home. As an example, today. On Mondays, at the moment, I work in an internship work placement at a government office. There are usually a lot of people that come through there. Since November, when I mentioned I was having difficulty dealing with being out in the public area because of sensory issues, I’ve been in the “back” – still in the main room, but away from the crowds that come in, unless someone needs help or I have to go post the job ads on the bulletin board. And I *still* come home so tired that I regularly go to sleep for 1-1/2 hours or so, and I had to switch the days I cook dinner with my mother, because I was too exhausted after a day of working there to concentrate on dinner. (Not to mention to need to sleep.)

    So yes, definitely a relevant article, and I’m glad I found it! I’m sending the URL to some people who might need to know about this….

    • tagAught said

      Argh. And that doesn’t even count the stresses of dealing with incoming sensory information, let alone sensory overloads. Those add to fatigue, because again, it takes a lot of energy to process that information, and we not only have more information coming into our brains’ processing centres than NTs, because of the problems with our sensory filters (which is how I see the effects of sensory disorders), but we process the information differently, and in a way that I think *also* takes more energy. (Or if it doesn’t, just the amount of information coming in increases the energy requirements enough that it can cause fatigue after a day of dealing with that.)

      My parents worry about the amount of sugar I eat (though I’ve been eating a lot better in general since I came to live with them), in a large part because my dad’s diabetic, and while I tend towards hypoglycemia, so does one of my sisters who has serious spikes and crashes in her blood sugar if she doesn’t pay attention. But sugar (at least, proper sugar, not the processed and bleached white sugar or brown sugar – I’m talking cane juice, fructose, etc.) is brain food. It’s what provides the energy the brain needs to work. And maybe that’s one reason I have such a sweet tooth….

      *shrugs*

  18. LushiaKyobi said

    Oh goodness, I nearly cried while reading this; because it’s good to know I’m not the only one who deals with this!!!! I have Asperger’s syndrome and I cannot work or go to school full time, and same goes for socializing and being in overstimulating environments. It makes me incredibly fatigued, and I’d really want to get things done… but I can’t when I’m exhausted all the time. It’s frustrating! I often hate myself for it, and I feel like I’m lazy because of it.
    Sometimes I wish I was normal…

  19. Scott said

    While not being able to sleep as usual I went online and came across the aspie quiz, having had people ask me in the past if I had aspergers, and having had autistic friends and friends with autistic kids, I took the test, I tested 186 of 200 on the aspie test and 86% on another test, I then started looking into it further, my hearing difficulties apd is common with aspergers as well as my high pain tolerance, most likely spd, poor short term memory, lack of social skills, apparent OCD, most of what I can think of turns out to be a symptom, I started taking vitamin d last month, it helps me with depression and fatigue, I found out tonight vitamin d may be associated with aspergers, just looked up fatigue and found your post, what you wrote fits me almost exact, I get tired so much faster then others. But can also out perform others when I am fixated on an activity. —– would like to get professional test but high cost and no benefit for having a diagnosis. Had som friends take the aspie quiz, the one with an autistic son had 163/200, all others so far are nt, my partner at work was afraid to take it, he was professionally diagnosed, I am the only one who gets along with him, our coworkers think we are alike. Much more can be written but computer too slow and frustrating.

  20. Alyssa said

    Thank you so much for sharing this with us! I can relate to it entirely, since I myself have Asperger’s and deal with this on a daily basis. I am quite aware of my fatigue problem, but the way you described it is strikingly similar to what I experience, and you managed to capture the struggle I failed to put it into words myself. I’d get so frustrated at myself for being unable to do things I want to do when I have a busy schedule, because I’d be spending most of my free time sleeping. I have to deal with it more now that I’m in college.

    Anyway, I wrote a post on my own Asperger’s blog comparing your experience with fatigue to mine, with a link to your post. Check it out if you’d like: http://life-of-an-aspie.blogspot.com/2013/10/aspergers-and-fatigue.html

  21. Casey A. said

    Looking for more information on Aspergers and excessive sleeping I came across this post. It’s very relatable and explains many things in my recent personal history. Where you write ‘Canada’, I read ‘first four years at university’ and all makes perfect sense. Thank you for this post, I hope to find a way to deal with this fatigue soon (though I’ve found attempts at ‘dealing soon’ with Aspie traits often backfire proving the intelligent part of me over-confident and un/consciously still strugling with accepting the ‘slow’ part of me). Thanks again, I’ll read up on more of your posts and hope to learn all I can from your experiences. Best wishes from the Netherlands.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
Follow

Get every new post delivered to your Inbox.

Join 151 other followers

%d bloggers like this: