Autistic Regression and Fluid Adaptation

In my last post, I talked about my recent language difficulties and mentioned autistic regression. Sometimes called autistic burnout, autistic regression is a loss of skills or coping mechanisms.

Regression can refer to a specific set of skills or abilities:

  • progressively losing the ability to speak

  • deteriorating executive function

  • reduced memory capacity

  • loss of self-care capabilities

  • loss of social skills

  • reduced ability to tolerate sensory or social overload

It can also refer to a general loss of the ability to cope with life or to accomplish all of the necessary daily tasks of living.

Sometimes the loss is temporary–a period of a few weeks or months–after which a person regains the lost abilities. Other times the deterioration in skills or coping mechanisms takes place over years. It may be come permanent or semi-permanent, with skills being regained but not to the level at which they previously existed.

Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress. 

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How Accurate is Regression?

The phenomenon of losing skills or coping mechanisms is very real. But is regression an accurate term to describe what’s happening? It’s a word that I’ve seen used frequently–often by parents or therapists to describe a loss of skills or capabilities in an autistic child–but also by autistic people themselves. It’s also a word that implies going backwards in a way that might not be helpful for the person who is being described.

It doesn’t help that there are multiple ways of defining regression. The classical Freudian definition often used by psychologists refers to regression as a defense mechanism in which a person abandons coping strategies and reverts to patterns of behavior from an earlier period of development. This suggests a willful loss of coping strategies or abilities.

A more general definition of regression is a shift toward a lower or less perfect state in the form of:

  • progressive decline due to disease (or)

  • reversion to an earlier mental state (or)

  • a gradual loss of skills or function due to aging

Those first two–decline due to disease and reversion to an earlier mental state–are often how regression is used in reference to autistic individuals, especially children. For example, a child who had a lot of meltdowns as a toddler seems to be doing much better throughout elementary school. Then he hits puberty and the meltdowns return in full force. To describe this as regression can incorrectly suggest that he’s returning to his toddler state of mind.

The same is true of a youngster who is potty trained but suddenly starts having accidents when she begins elementary school. Or of a young adult who completely stops social interaction in the weeks after entering college. It’s easy to look at these individuals and assume they’ve regressed to an “earlier age” or mental state.

Is that what’s really happening? Not literally, no.

It’s important to remember that an eight-year-old who can’t toilet themselves is still an eight-year-old. A thirteen-year-old who has daily meltdowns just like he did as a toddler still has the body and mind of a thirteen-year-old. While a loss of current coping strategies may cause a person’s behavior to resemble coping strategies (or lack there of) from an earlier period of development, their chronological age doesn’t change and they may or may not retain other capabilities associated with their present stage of development.

So to imply or assume blanket regression to an earlier age is inaccurate.

Fluid Adaptation

A better analogy than regression is that of the demands of life exceeding a person’s resources.

Imagine a hot summer day in a city. Everyone turns on their fans and air conditioners to beat the afternoon heat, exceeding the ability of the power grid to supply power to all of the homes and businesses in the city. To cope, the electric company might implement a brownout–an intentional reduction of power to each building–or a series of rolling blackouts in which some locations get full power while others get none.

The autistic brain seems to work much the same way when faced with excess demands on resources. There are days or weeks or months when the demands of life are too great and our brains decide to implement a brownout or a rolling black out. Some coping skills or abilities are temporarily taken offline or run at reduced efficiency.

But this loss isn’t the same as a permanent regression or even the same as never having had the skill or coping strategy in question. Most people’s abilities–including the ability to cope with daily life–are fluid over the course of their lifetime. Autistic people’s abilities seem to be especially fluid–at times appearing to advance in great leaps and at other times seeming to suddenly disappear.

Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.

When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.

In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.

Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.

72 comments

  1. PK

    I wonder if “disruption” is a better word. It doesn’t imply backwards movement, just an “issue” with functioning. And it doesn’t imply a time frame. And it works with the brownout/rolling blackout analogy :) What do you think?

  2. Lucy

    Right now I am adapting to what for me I notice and label (although I have issues with labels) as regression*; which happened over the last few years. Here’s the important lifeline 1. Not losing sight of goals, and 2. Adjusting time frames &/or parameters such as various people’s assistance required, and 3. Holding or even building self-esteem so as to stave off falling into a pit of depression and lassitude.
    * A better analogy than regression is that of the demands of life exceeding a person’s resources. Excellent re-framing – if that is the right word – I now see my thoughts clearer thanks to you. :)

    >Also important: Thank You for the cool, beautiful journal which is wrapped and under my tree for me!<

    • Lucy

      ^^^ Whoops, – I am sorry – I forgot to put quotation marks around “A better analogy than regression is that of the demands of life exceeding a person’s resources.”

    • musingsofanaspie

      Your lifelines are great! I think #2 is especially important. Slowing down or adjusting expectations can go a long way toward preventing depression or a sense of failure when we’re faced with a loss of skills/abilities/coping strategies.

      Yay for your journal arriving in time to be wrapped and sitting under your tree waiting for Christmas morning! :-)

  3. fromobscurity

    Thank you so much for this. This is exactly what i needed to read right now. I really like how you use “fluid adaptation” instead of “regression”.

    I literally just had to say no to a “small” social interaction (well, it seemed small to the other person, but was a pretty big deal to me) because I wasn’t given any notice and had a big day yesterday (spent a lot of time on the phone), and I have to go grocery shopping tomorrow. Doing the social thing today too would have been too much, especially condisering it’s the holiday season, and my base stress level is high. But I still feel bad, weak, and defective for saying no. That feeling is so deeply ingrained.

    Since I’ve started living independently, I’ve had a much harder time doing social things that I used to make myself do. I also find sensory issues to be more pronounced. What I’m not totally sure about, is how much of what I’ve been experiencing is what you’re talking about and how much is just simply being realistic about my limits. Prior to moving out with my boyfriend, I used to regularly push myself to participate socially, and I was chronically burnt out and miserable. So I really don’t know how “functional” I really was before, or if I just looked that way to myself and others because I was ignoring my needs and limits because I didn’t know I was autistic. Maybe it’s partly both? Either way, you’ve certainly given me food for thought.

    I am sorry that you’re experiencing communication difficulties, and you have my sympathy. But I’m glad to see that it seems like you’re looking at all of this in a healthy and realistically optimistic way. Taking care of yourself is really important. Perhaps (and this may be totally off the mark, as I of course don’t know all the details), that the hormonal changes you’re going through and the fact you now have a really successful blog are simply requiring readaptation. Remember to be kind to yourself, and don’t put too much pressure on. It’s so easy to end up thinking that we’re weak or incapable because we’ve been told as much so many times. We’re not.

    • musingsofanaspie

      It sounds like you’re being more realistic and kinder to yourself, which isn’t regression or anything other than acknowledging that you’re human. I used to push myself really hard to do all of the things I thought I should be doing but i’m realizing that isn’t smart or healthy. As you said, pushing yourself to socialize leaves you with less energy for self-care. In the short term, you probably appeared to be more “functional” but in the long term, the cost is high. We have a limited bucket of resources, so we have to choose wisely how we spend them.

      I think there may be an element of readaptation going on for me right now. And if even if there isn’t, I’m approaching my language issues as if there is. Just posting about it last week and hearing form others who have had similar experiences was so reassuring. And it gave me permission to take another big step back from interaction online, which has made this week somewhat easier in terms of overall communication. Okay, so Monday was awful and Tuesday was challenging, but the last two days have been better. Thank you for the kind words and the reminder. I need to keep hearing that so I don’t forget. :-)

      • fromobscurity

        Thank you, that makes sense. And I think I did appear to be more functional – at least that how it seems from people’s reactions to my new honesty about what I can handle.

        I’m glad things are overall gettting better for you. I think your way of looking at all of this is a huge step in the right direction. And please don’t feel pressure to respond to me or comment on my blog or whatever. I won’t be offended because of a late or absent response. I certainly know how it feels to just not be up to communicating, and it’s okay :)

  4. fishgodeep

    Love it! Thank you. ‘Fluid Adaptation’ to ‘the demands of life exceeding a person’s resources.’ This is my reason for seeking a diagnosis currently. I was bobbing along quite nicely for a while, then we had a change in management at work and I went to pieces (not because they weren’t good people, but they were different!). I couldn’t speak properly, at times I was not able to speak at all, I was not able to take in what people were saying to me, and loads of other stuff… Myself and my partner had been though a scary time that ended a few years ago (neighbour problems) and maybe part of it was a delayed reaction that was triggered by this other change. I am so used to masking extreme emotion (on the surface), and getting through things and out the other side – it’s how I got through school… With the speech stuff I felt I’d ‘gone back’ to what I was like as a teen, but the way you describe it above is a positive way of understanding this.

    Through what you write here I am beginning to feel that it’s ok to be myself. It’s taken me a long time.

    • musingsofanaspie

      I’m glad this has helped you frame your experience more positively. :-) The delayed reaction thing makes sense, especially if you’re good at stuffing things down and not processing as they happen. I hope things are going a little better for you now. Having an explanation and rediscovering yourself is a huge help in getting a grip on some of the more frustrating aspects of being autistic and not realizing it.

  5. Jennifer Roark

    I’m so glad you shared this. While it is something that can be so frustrating, disheartening, and have even led to face-down-in-the-floor temper tantrums (even well into my 30s) . . . the wisdom gained from determined perseverance to figure out a way through it (or to survive it until it’s over), has been priceless to me. While I understand why some would like to avoid a term that suggests backwards movement, or losing ground . . . I also recognize that it is what it actually feels like to me while I’m in it.

    Which is kind of what leads to the temper tantrums (just had one last night . . . so it’s nice and fresh in my mind), because I *know* I know how to do *this* . . . so how do I suddenly not know how to do it? It literally feels like I regressed to an earlier stage, and all I have is a faint recollection that I remember being like this before and that I somehow figured out how to get out of it . . . which leads to the fluid adaptation.

    It was the hardest when I was younger, because I didn’t have much history or experience to pull from regarding what things helped me. But now, even though it still feels like I’m trying to do push-ups with my lips, I’m able to assess my situation much more quickly, a little more easily let go of all the circles of thinking my mind likes to pattern into when I get stuck, and start letting a free flow of all of the things that have helped in the past start circulating through me, and open up with trust and faith in life and the universe despite what I’m seeing and experiencing in my immediate circumstances.

    I then work at having my *stubborn* tendencies work in my favor instead of against me, and convince myself (all of the way to the center of my bones, from head to toe) that I’m actually okay and will at some point return to my pre-regression state when it’s time for me to be there. And until then, I’m still okay. I think more simply put . . . I come to peace with it inside of me. And it does require slower, more conscious movement while I’m doing it. It’s like I have to be come super present and aware of everything I’m doing for the whole time I’m awake. It takes a lot of discipline, patience, and perseverance . . . but it’s worth every drop.

    PS – Sorry for the novel. My other *stubborn* focus has been years of disciplining myself to learn how to get into that still place, and learn how to be able to write out my feelings and thoughts without them trying to run and hide from me. I’ve been a little *too* successful. : )

    • musingsofanaspie

      That’s a good point about having faith in ourselves and believing that we’ll get back to where we were or a comparable place when we’re ready. It’s too easy to start catastrophizing and thinking we’ll be “stuck” with in a frustrating place forever.

      No worries about leaving a long comment – i get plenty of them and enjoy reading every one, even if my replies are a bit shorter these days.

    • JK

      Thank you for sharing this. It looks like a page from my own diary! It feels good to know others my age experience this too, like its ok, or acceptable. It so hard to be kind to oneself when feeling like that. Thank you again for sharing.

      • Jennifer Roark

        Not to turn this into a “Thank you . . . No, thank you!” back and forth – but I do want to thank you JK, and you too musingsofanaspie for your comments and thoughts. I tell myself often that I don’t need responses from others. I do a lot of blogging and facebooking (<— it's now a verb : ) which all stems from my desire to find a way to connect that works for me AND others not like me, in some satisfying way so that I don't feel so bone chillingly alone in my existence.

        And then here, I get just a couple of short replies from total strangers . . . and then I feel something defrost in me that immediately wants to start crying because it shows such a stark contrast to the rest of my life, and just how long I soldier on with almost no feedback from others, whatsoever.

        I put myself out there over and over . . . and there's almost no acknowledgment or recognition for it. People are so conservative with their "likes". They are so walled up within themselves due to judgment and projection of their own faults and failures. I continue to do it because I do it for me. But I've come to realize, for myself, that it's not me (and I believe this true for any of us on the autism spectrum) that has the social ineptness.

        Because it's not *just* about your responses to me, it's the quality of your responses. People "respond" to me every so often, but most of the time it means nothing to me because it is hollow and thoughtless. Whereas, with your responses, there is a feeling of humbleness, sincerity . . . realness. That is so rare, so precious, so . . . heartwarming. I *know* you used some of your valuable resources of energy to respond to me, and it's so greatly appreciated by me because I know you didn't have to do that. I felt like I was talked "To", instead of talked "At".

        I want to wrap this up so as to not divert from the topic of discussion, but I would like to throw this idea out there to maybe take into consideration . . . I have found it to be true for me, that I easily/naturally connect and know how to *be* . . . when a person (any person) is being openhearted, honest, and sincere. . . because that's more how I operate. I feel this is a more real or natural way for a person to be until it gets conditioned out of them. We just aren't able to be conditioned. We are only able to stay true to ourselves in order to function, because that's how it should be. It's not us that is out of balance, it's the state of society that is out of balance . . . and we're just here to start correcting that balance. Hence the continued increase of those with autism.

        Sorry . . . I'm working really hard to stop myself from writing more. I want to go write a blog about this instead of it being in your comments . . . but it feels warm and safe here, and so I'm able to think/focus/feel here. You've done a lot of hard work to generate that feeling here, and I don't want to disrespect or intrude on it. But I do want to end this by saying thank you, musingsofanaspie for providing a place that feels so good that I can't make myself stop writing, as well as providing a place that invites such gentle, kind, sincere, beautiful, pure souls as I see in every one of the people who posts comments on your blog. It's a true testament to what you've accomplished here.

  6. Mados

    Very good. I especially like the formulation: when life’s demand exceeds a person’s resources. I experienced a major loss of social skills in my teenage years … or actually, what that was, was just that the childish social skills were not sufficient anymore, so I got a shock and withdraw, and I didn’t manage to acquire proper adult social skills until many years later.

    In my current age, I think my social skills are better that they have ever been before. However, it seems that my sensory issues are much worse, and getting worse… or perhaps it is in part the improved social skills that make sensory problems more noticeable because social activities tend to come with sensory overload.

  7. askanaspergirl

    This is an interesting discussion of how autistic people cope with increasing demands. I’ve noticed my finger stims (tapping and rubbing mostly) more often than I used to — maybe I’m just more aware them since I’ve become more conscious of my surroundings (less distracted by the anxiety). Or I’m just putting myself into anxiety inducing situations and since I don’t distance myself so much anymore I’ll feel my fingers to self-soothe.

    • musingsofanaspie

      Your avatar always makes me happy. :-)

      Both of those sound like plausible explanations. I’ve noticed that I stim more in social situations simply because I no longer consciously stop myself.

      • notesoncrazy

        Your avatar always makes me happy too! But as much as I claim to be tv-centric, I really just said the words “yeah! I love the yellow umbrella!” in my head and went BAM! How I Met Your Mother! Is your avatar in reference to that? Or is it simply a yellow umbrella because yellow umbrellas are great?

        • askanaspergirl

          I thought about the Mother’s yellow umbrella after I picked my avatar. I’d initially picked it because I’ve always thought of autism as an umbrella condition: a collection of interrelated traits that manifest differently (although in some sort of social, communication, and behavioral manner) from person to person. It seemed like a decent analogy for exploring my Aspergirl self.

  8. Christa

    This is so interesting. I wonder if this has been what’s been happening to me? The last couple of years it feels like I’ve gradually lost control of even the basics of life. My home, finances and body are chaos. I used to be on top of things for the most part; now I’m just barely keeping my head above water. I’ve been depressed, but I’m not sure if this has caused the depression or the depression has caused this. I’ve been forcing myself to do so many things. Now everything seems to be a big mess and I feel so overwhelmed. I need to fix things, especially for my family (I have a husband and two daughters), but I don’t feel capable.

    There’s definitely the sensory overload. Sometimes just hearing my name called makes we want to crawl away and hide. Not sure if any of this makes sense?

    • Jennifer Roark

      Hi Christa,
      I could so relate to what you described, and wanted to share with you. I’ve been a single mother (my son just turned 18), estranged from my family, no support from his father (financial or otherwise), and have had to work full time. I forced myself to do whatever it took in order to provide for my son, including greatly sacrificing myself.

      During one period in particular, things kept crashing in on me faster than I could adjust my life. It started with witnessing my grandfather taking his last breath, to changing jobs, to my son being hospitalized for a week when he turned 12 for suicide watch, the same day my mom was having knee surgery and expecting me to be at the hospital to support her even as I was trying to save my son . . . etc. This is too much even for a person who isn’t an aspie. But I was not going to let my son down, and the universe was giving me no other choice, than to figure out a new way of living and being.

      I only preface with that, in order to establish that I understand what it feels like to think you have to do all of the things that you currently make yourself do. I certainly felt that way when I only had myself to rely on, and a troubled pre-teen son who only had me to depend on in the whole wide world.

      So please hear me, Christa . . . and anyone else who is experiencing what she is. Slow.down. Don’t mindlessly move from thing to thing to thing just trying to get through your checklist. I’m horrible at prioritizing. It took me looking at it from a life/death perspective in order to shake myself out of a “everything is important, and it is all equally important” mind frame.

      You’re used to being on top of things. But life continues to speed up for all of us as technology advances quicker than anyone can keep up with. I know it’s more comfy to do the same things you’ve always done, and in the way you’ve always done them . . . but you will continue to spiral until you do a reassessment of your life, and take steps to do it a new way . . . one that works better for you and for others in your life. It is possible to find a win/win if you get creative enough and find enough courage to try it.

      As an example, here is how my life now operates after transitioning myself from where you are now. I no longer go off of what others expect of me. I always check in with myself before committing or doing anything by asking myself, “Am I doing this out of obligation, or am I doing it because I feel like I really want to?” I held myself to an absolute strict rule of no longer doing anything out of obligation. And that one thing alone changed my life. I had to get through all of the really pissed off responses I got from people . . . but anyone who left my life because of that is still stuck in their own life and miserable, and my life has become much more peaceful and centered. In other words, ultimately my life is better off from not having them in it, even though they are family and I still love them.

      I learned to hear my heart. I learned to not make a move or do something until I could feel deep inside of me what I really feel about it, and not what I’ve been told to feel about it. I taught myself to start listening to that feeling instead of what others said. I found that every single time I listened to that quiet voice deep inside me, I felt stronger . . . more coherent . . . more alive, my life became more fluid, effortless. Any time I pushed it aside or dismissed it . . . I became weaker, more depressed, my life more chaotic.

      Become more trusting of yourselves. You know much more about what is right and wrong in your life than anyone outside of you. You have a world that is obviously breaking down and falling into chaos . . . trying to tell *you* that *you* have something wrong with *you*. Really? You mean, because the way you’re doing it Mr. World, is working out so great for you?

      We each have our own way of being and doing . . . but I promise you . . . the more you allow yourself to be your own authority, let yourself off the hook for being “wrong” or “broken” . . . and start seeing that WHY you suffer . . . is because you are everything that is RIGHT in this world . . . stuck in a world that is currently wrong and broken . . . the more you will start to see who you really are. That you are these beautiful beings of light and love. And there’s more being born every day. You are just the beginning.

      And it’s hard for you to function, because you’re trying to force yourself to function in a way that is broken. I hope when you’re ready to accept this, that you remember my words and see that you are all leaders. You are all leading a new and better way for everyone. And just like any great change in history, those who first come in are the ones who take the brunt of the resistance from the old ways.

      You are all leaders. You are all magnificent. You are all brave and courageous souls, even as you feel like you’re the biggest burden and failure of all. It’s lonely at the front. It takes great heart. It takes an enormous amount of love and faith to volunteer for something where you as an individual will suffer greatly . . . but are doing it for the greater good of all. I know it’s hard to see the point of all of it when you’re down in the trenches getting blasted and blown up . . . but I promise . . . I promise you, it’s all for a bigger purpose.

      You are loved . . . so very, very, much. You have to operate for so long on just hope and faith alone with no validation, no confirmation that anything you do matters at all . . . but it does. Every single day that you wake up and decide to take another breathe, you are making a big difference for all of us. Keep being there for each other. Keep supporting each other. Keep encouraging and learning from each other. And it will get better. Maybe not in the way you envisioned, maybe not in the time frame you would like . . . but let go of trying to control it or make it look how you want it to look . . . and let it be what it is. Embrace yourself and all of who you are . . . and just be that with love and openness.

      You will find that instead of mimicking others, that as you show others a new way despite your challenges and start to find yourself and shine . . . that others will begin to mimic you. You may sometimes wish you were normal or like others . . . but again, I promise you . . . when you let your true self come out and shine . . . it will be YOU that others wish they were like.

    • musingsofanaspie

      It sounds like you’re overwhelmed by life. If the depression isn’t the cause I’m sure it’s a contributing factor. Depression makes everything so much harder. Is it possible for you to cut out any activities from your daily life? Like just pare things down the most essential activities and even ask your husband or other people in your life for help with those things. It can be really hard to rescue yourself when things get rough. Asking for help is a good way to start figuring out how to stop that drowning feeling.

      • Christa

        My husband feels overwhelmed right now too. If I ask him for help, he may agree to it but not follow through, which will make us both feel worse. I feel so bad because so many people do more than I do and aren’t overwhelmed.

        There are a couple of things I could cut out, but I would feel guilty doing so. They are things that help me in other ways. I know I need to change something though, or everything will fall apart. I just feel so stuck.

          • Christa

            I have to admit though, your original post here about regression actually makes me feel hopeful. I’d never considered that possibility before . . I thought I could be suffering from early dementia, or that things were only going to get worse the older I get. At least regression could be temporary!

            • musingsofanaspie

              Those thoughts have been at the edge of my consciousness too, but I’ve read so much from others about these temporary periods of disruption that I’m hopeful this is what’s happening with me too.

  9. Steve Borgman (@SteveBorgman)

    Wow, what a great article. As an outsider (someone without Aspergers/autism), I have read about challenges with coping just with day to day uncertainties of social skills, sensory challenges, and the hassles of daily living. It seems that, over time, if there were too many transitions, and there was not this perspective of “fluid adaptation”, a person could easily appear to “regress” because of the overload of dealing with all the change.

    • musingsofanaspie

      I think that adapting to change is probably the number one reason that we feel like we’ve hit a patch of regression. But I think it can also be a case of things creeping up slowly over time too, until we wake up one day and feel like we’re in way over our head.

  10. JK

    I wonder how this ties in with chronic fatigue syndrome? For me, a period of exhaustion and illness always follows increased demands such as starting a new course, trying particularly hard to be normal, or some physical illness like flu or glandular fever teamed with trying to keep going.

    There is a much higher incidence of autism and other specific learning difficulties in people with CFS than in the general population. This suggests the additional demands of coping with the disorders does contribute to illness in individuals who are predisposed to CFS.

    Whether or not I get a diagnosis I’m not going to try and be “normal” anymore. It takes too much effort and makes me ill.

    • musingsofanaspie

      Trying to be normal is so much work. I’ve basically given up on it too. It feels good to let go of trying so hard and focus more on doing things that contribute more to my quality of life.

      I’m not familiar at all with CFS but I hope someone else who is will share their thoughts.

  11. JK

    May I ask a question that is off topic please? I don’t know if this is an appropriate use of your comments but I have no clue where to ask.

    I am very interested in the CFS-autism/specific learning difference interaction and am learning what i can about it. I spent a lot of time looking for information a few years ago but it wasn’t available when I needed it. Because of this I want to share anything useful or helpful I discover, even if its just subjective experience. My question is: How would I go about making this available to others?

    If anyone has any suggestions or tips I’ll be very grateful.

      • JK

        That’s an interesting idea. Thank you. I will look into it and think about how I want to format/present information. But it could work well. The thing is to make it easily accessible to anyone trying to find info, so it would need to be visible, or “findable” on the Internet.

        Thanks.

        • autisticook

          The best way to be “findable”, I’ve found, is to simply interact with other blogs. Comment, crosslink, engage. I’d been actively commenting on several blogs for a couple of months before I started my own, and those bloggers were my first visitors. From there, the ball started rolling. My blog doesn’t get many hits from search engines, and I don’t have a huge amount of followers, but I’m still stunned that anyone is willing to follow me at all! I cherish each and every one of them. (That’s why I also make it a point to respond to comments on my blog. It’s simply the best way to interact with your readers. I’m always a bit disappointed if I leave a comment on someone else’s blog and don’t get a reply or even a short thankyou. Depending on how big the blog is, of course. I don’t expect someone to reply to 50+ comments. But when I’m the only commenter? Yeah).

          • JK

            Thank you for explaning how this works. I am clueless at the moment. I think I will start writing up my thoughts and if I get a collection of short essays I’m happy with, I’ll give it a go. I will also have a look at your blog (after christmas) and check out the cross linking thing.

  12. notesoncrazy

    I need to share this with a few important people in my personal life. I’ve been beating myself up for my own “regression” lately. I feel like since certain autistic traits have been much more pronounced in the last six months, I clearly must be making them up or something. But really, to be completely honest with myself, it makes a whole lot more sense that I’m having to put in a lot of effort to adapt to big big big changes and making adult decisions without depending on an academic atmosphere where I know the rules to follow. I had a similar period of difficulty six or seven years ago when I adjusted from high school to college, so I think it makes a whole lot of sense that I would need to cope in these “regression” (I don’t like the word either) ways to figure out big life choices as I move out of a life-plan that wasn’t working.

    • musingsofanaspie

      Transition times seem to be especially ripe for “regression” periods. Also, adulting is hard! :-) Cut yourself some slack. It takes quite awhile to get the hang of. In the mean, there are a lot of bumps in the road. Geez, now I sound like someone’s mother . . .

  13. stimmyabby

    I love the analogy. I think I’ve experience this, or something like it, multiple times. A particularly interesting thing was losing social skills, and, at the same time, getting overloaded less often. I think one building was given some of the other one’s energy… :)

  14. Jinma

    This all makes so much sense to me and helps me put things into perspective.

    I am happily beginning a much needed 2-week vacation. Staycation, actually. Approaching it, I felt like an exhausted runner staggering over the finish line. I’ve shared before about my new managerial role taking so much out of me that my weekends were pretty much devoted to “recharging” only to be depleted during the following workweek. When my weekends have been social, I’ve been “running on fumes” the following week.

    To continue the analogy, I’ve learned to apply a recharger or generator to bring my levels up until I can get a full recharge. For me, what helps is listening to music I love and singing along. Reading an engrossing book. Indulging in a special interest.

    I recently bought some slim ear protectors (ear muffs for shooting, etc) and I’ve started wearing them in the train station and on the train. Wow, it’s like unplugging an energy guzzling appliance to thwart a brownout. I hear that if I wear earplugs underneath, it will block even more sound. Just knowing this trick makes me feel so much less vulnerable to the effects of sensory overload. And they are so snug and cozy, it’s like having a portable, mini weighted blanket.

    I am going to bookmark this entire page to read during my next overload. I think it will help recharge me.

    • musingsofanaspie

      Your extension of the analogy to ways of recharging or bringing in a generator is terrific! And unplugging an energy guzzling appliance . . . :-D I’m so thrilled to hear that you’re at the start of a long, much needed vacation. I know how hard the knew job has been on your energy reserves. Wishing you must rest and recharging!

  15. booksonaspergersyndrome

    i used to have horrible rage attacks, but then i was being provoked. learning self defense actually helped me keep them down, and there’s no one to provok me too much at that time in my life. but i know i cant guarantee i’ll never have another rage attack again. that red fog and not knowing what you’re doing, not being in control, and later maybe not remembering what you did…
    as a child, i didnt want any interaction at all, with anyone. in my early twenties, dont know why, i wanted a relationship, friends, but couldnt hold on to them. constant presence and small talk drive me crazy.
    and now i’m back to square one. dont want friendship or a relationship. i dont even know why. maybe it’s because i’ve been rejected and had bad experiences.
    asperger syndrome is always there, it doesnt change. it’s just the environmental factors. an nt would never give up on all kinds of relationships, and probably wouldnt get the kind of rage attacks i had. we’re being affected differently, and we’re more sensitive and more quick to get back into our shells than nts. i know some nts who’d been through so much more than i had with people, and yet it never occured to them to give up socializing.

    • musingsofanaspie

      I think it can be harder for us to keep “coming back” and socializing or starting up new relationships because we have a sizeable skill deficit. It seems like often NTs will attribute a relationship failure to other person whereas we often blame ourselves. From a motivation standpoint, I think it’s easier to keep trying at something when you see some factor other than yourself as the “problem”. Also, I’ve noticed as I’ve gotten older that it becomes harder to be as optimistic about relationships after having so many go wrong. Perhaps that’s what you’re experiencing?

  16. Emily Patton Smith

    This discussion has been great for me to read and very timely, because stress-related regressions were the cause for my seeking answers (diagnosis) over a year ago, and I continue to struggle a lot with these things. It is very difficult to explain to family and co-workers why you just can’t manage what you used to be able to do well enough, because you are overwhelmed by so many competing demands.

    I’m not the first to say it, but the analogy of “demands exceeding coping skills” is perfect. This is a phenomenon which is observable in the natural world, and on an evolutionary level accounts for many extinctions: when the environment changes dramatically, the organisms least able to cope or adapt are the ones which die off. Humans (including Aspies!) are much more adaptable, but in order to maintain equilibrium and keep coping we need to back off from some stressors in order to deal with the ones we can’t avoid. Many other animals do this, too: reducing energy expenditure by hibernating during the winter months, for example, so that caloric energy can instead be channeled to keeping warm instead of searching for food, mating, etc. I often feel as if my regressions and meltdowns are cues for me to pare back to the essentials so that I can conserve energy and mental resources over the long run.

    • musingsofanaspie

      The parallels with evolution and the natural world in general make a lot of sense. Thank you for throwing that into the mix! :-)

      It is really hard to explain why things suddenly become “hard” or everything starts falling apart when previously it was chugging along just fine. People seem to keep bringing it back to burnout or depression or something that they can grasp from their experience, but I think nonautistic people aren’t very likely to have a similar experience to compare it to.

  17. ischemgeek

    After each move my parents had, I experienced a major loss in social skills. One time, I regressed so severely my parents had me checked out by a neurologist. Another time, they brought me to a child psych, certain I was depressed (I wasn’t. Yet.).

    Oddly, the social skills loss didn’t happen when I went to uni – my executive function went out the window instead. But that regression was a lot less severe than the others. I think because I got away from bullying and so the stress of being bullied was off my back.

    Lately, I’m having a bit of a regression in my conversational skills. I chalk it up to holiday stress and the fact that I’ve been sick as a dog with a bad cold followed by an asthma flareup for most of the past two weeks. I’m feeling better today than yesterday, which is good because tomorrow I have a long drive. Whatever the reason, I’m relying a lot more on scripts and being a lot quieter than normal, and retreating for quiet breaks in the bathroom a lot more often. I’m not exactly looking forward to several days in a house with ten other people (no, really, and yeah, it’s a normal-sized house. Privacy isn’t going to be an option. I’m going to bring books and coursework so that if I need to retreat into special interest for recharge, I can. I don’t care if that’s rude – the only other option will be to risk a meltdown).

    • musingsofanaspie

      That’s interesting that you’ve had different “outage” at different times in your life. I guess social skills loss makes sense after a move because making new friends and acclimating to a new place is socially demanding. And university is a huge burden on EF, but also on social skills I would think.

      Good luck with the holiday madness. When we went to visit family overseas last year, we were 9 people in an apartment. I took lots of walks. :-)

  18. pcdurbinwestby

    I am always very grateful for well-thought-out writings about losing skills we once had, taking years to acquire a skill, learning things that we “should have” learned before, not being able to do things temporarily and wondering if we have permanently lost the ability to [fill in the blank], sometimes getting it back, sometimes not, changes related to being in our 20s, 30, 40s, 50s, etc., being flexible (or not). Thank you so much for writing this!

  19. Michael Ashburne

    Oh my gods.

    Like others, I just found your blog thanks to a RT in the Aspie world. I’m a fellow Aspie also diagnosed late in life (at 39; I’m 44 as of this writing) who was lucky to find and marry an extreme NT 19 years ago.

    To the point: I’ve been experiencing for years about what has felt like an autistic “decline” overall: I have reduced tolerance for stimuli (noise, light, tactile irritations, etc.), a degradation in my ability to focus or concentrate (which, among other things, has all but taken away my love of reading), diminish capacity for socialization… I could go on and on. Everything has continued to gradually get worse.

    Reading this post was a great relief, and I would love to know more. Would you be willing to share with me the sources you used for this?

    In the interest of full disclosure: I have a YouTube channel (http://youtube.com/MrSnayl) wherein, among other things, I talk about my “autistic life.” I’ve been planning on an episode about this very topic with which I’ve been struggling. With your permission, I would like to use some of the information in your post as source material (with full credit, of course, and links in the video description).

    Thanks again for this. I’m so grateful I’m not imagining things!

    PS Sorry, I accidentally posted this in the Who and What section first; please feel free to delete that submission. Argh.

    • musingsofanaspie

      No worries, I deleted the duplicate one for you. :-) Apparently there’s a lot of that RTing going on today! It’s great to have so many new readers, followers, and commenters (and critics).

      Most of the accounts I read about autistic regression were on Tumblr. If you search ‘autistic regression’ over there, you’ll turn up the relevant posts and from there it’s a matter of chasing down the reblogs and notes to read everyone’s stories. After reading and digesting them, I came up with my own theory of fluid adaptation because the term regression bugged me so much. And yes, feel free to use parts of this – a mention of the blog or text link back would be great.

      Thank you for the kind words and for commenting here! You’re definitely not imagining things. :-)

  20. starfish

    After graduating from university and beginning my postgraduate studies, somehow my life went somewhat downhill. Coping with thyroid problems, weird mental side effects of the pill, and the crazy months before getting married didn’t really make it better. Hopefully the moments where I can’t speak fluently or where I can’t write correct words by hand will become less again. Last week I had a meltdown while surrounded by strangers (we had sat down at their table to solder some stuff) and it was absolutely embarassing … yuck.

    • musingsofanaspie

      I’m actually having a week very much like yours, unfortunately. Work up nonverbal yesterday. Had a public meltdown last week. Gah. This sucks and I’m so hoping it’s going to go away eventually, because yes, embarrassing and hard.

  21. Mr Snayl

    Hello again! I posted the episode about my own experience with “autistic regression” on my channel today. I cannot thank you enough for this post. It has helped to clarify so many things for me. While it may not have fixed anything per se, at least I have an idea of what is going on. Understanding the why does make dealing with it so much easier for me.

    As agreed, I did mention and linked back to you. If you’re curious, the video is here:

  22. sparksofautism

    Very interesting stuff and again I relate to it all, I have always noticed that I go through ‘phases’ with certain things – sometimes I am on top of everything and then I drop in to a period of inability to look after myself properly – I have just never noticed what triggers it. I am not officially diagnosed, I suppose I am self diagnosed (took a test or three online) My son has an ASD diagnosis which is what led me to the tests and to here.

  23. creativelypaleo

    Entering peri menopause is seeing me slide backwards in so many of the areas you discuss. It’s frustrating, and I hope it improves once this whole hormonal disruption is done with, but I have a feeling it is going to be a case of learning new mechanisms for this next phase of life. It sucks be ause I’d just, finally, got to a point where I was comfortable in my own skin, and now i’m almost back to where i was as a teenager again!

    • musingsofanaspie

      I’m in the same situation and it’s horrible. I seem to be getting closer to the “finish line” and it’s recently taken a huge turn for the worse. I’m so looking forward to being done and finding a new normal where my hormones don’t dictate so much of my daily life.

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