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.
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.
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.
133 thoughts on “Autistic Regression and Fluid Adaptation”
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?
Disruption sounds like a great alternative. I like how it implies an interruption rather than a backwards movement.
Excellent and thoughtful topic. I am a professional in the field and I am trying to help a family cope with these issues right now with their son. He has had a broad “disruption” across almost all his former coping skills and daily life skills and this has been obviously difficult for him and his family. Do you have suggestions for how to help a family through this period?
Hi Keith. I don’t claim to speak for any other ASD individual, my experience is my own. I don’t have a family either, I live on my own. But I have been experiencing “a broad “disruption” across almost all my former coping skills and daily life skills” so my input may be of some value to you.
One of the most helpful things to reduce my anxiety and increase my available cognitive resources is regular exercise. Especially before work. It seems if I get my heart going and exert myself enough to raise a sweat, I feel less autistic during the day. It really helps me get through the work day. Maybe a similar approach with your patient could reduce his anxiety levels and therefore his family’s.
I don’t know how relevant this information really is to your request but I hope it helps.
Hi, Keith, I agree with Sean regarding exercise. Meditation also has helped me. I’ve also recently been exploring MoodGym, which I read about in the NY Times. It’s helping me stop and think about how I react to stress and when things don’t go my way, and it’s been useful in helping me manage thoughts and feelings.
Keith, from the point of view of having worked educationally (woodwork) with 12-18 year olds who are on the spectrum.
I threw all my resource into: firstly, sustaining relationship on an affirming Rogerian basis; and, secondly, ensuring that any woodwork project a student was minded to undertake, would come to a successful conclusion (that allowing preservation of any trust students came to place in me).
I take myself to be on the spectrum, so use my own life experience to do empathy with students. I’m taken up fairly completely in seeking the means of affirming the autistic, and thereby taking it back from the social that tends to view the autistic reductively and negatively
The only wisdom I then have, and expressing that across the excellent perspective of this article, is about momentarily reducing the (ultimately socially grounded) ‘demands’ on a child; so that in that moment they can cope exuberantly, spontaneously, self-expressively. Unleashing the inner autistic, and ending safe in so doing, might express that.
I see so many parents of ‘special’ children doing exactly this, and tend to take my cue on things from them.
My child has had many shutdowns & regressions reverting back to a 3 year old most times along with complete shutdowns, losing speech, use of limbs, memory of who her parents are & where she is. This can last up to 3 months plus the longest being 2years
i prefer “interruption” myself. disruption feels too much like it has to be something major, when for me it isnt necessarily something “major”, its just that (as you wrote) ive used up my available resources for now, so i have to go on reduced systems or take some of them offline for a short while. im going through just such an interruption right now and i feel it most especially in my thought patterns im kinda free-floating in the river right now, not paddling because i dont have the energy to. thanks for post. people dont understand how difficult it can get added to this, the near impossibility of communicating it to “neurotypicals” because of their tendency to center reality around themselves and their own version of it. i feel like, as a very high functioning individual, that im surrounded by irrational and completely incomprehensible entities who operate almost entirely on emotions and the irrationality that arises from them. im tired right now so its even that much harder to understand and interact without feeling like someone is poking needles into my eyes and brain.
I agree with disruption. In fact, it explains a lot-I remember doing okay until my life was disrupted by little things like graduating from school and going to work or moving to a new place. I always thought that if I had just the one coping method and stuck with it, I’d be fine. Not exactly!
It would be awesome if we could keep using the same coping method but it seems like that’s not always the case.
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!<
^^^ 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.”
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! 🙂
Hello Musings, I didn’t know how else to contact you re: this entry about regression and fluid adaptation. I understand that this is your experience, and your experience validates everything I think has happened to my nephew. Can you point me to an article by an expert that can substantiate some/all of what you’re saying? I’m appealing a case to The San Diego Regional Center here (which helps people with developmental disabilities and autism). They say that his autistic behavior, testing within the ASD on two Vineland tests is due to his mental illness (paranoid schizophrenia) and that he does not have true autism. They say his learning disability is too mild on one hand, and that if he had true autism, he would’ve displayed stronger signs in early childhood. Thank you, so much.
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.
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. 🙂
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 🙂
Thank you for being so understanding. I’m still reading and enjoying everyone’s posts but so rarely comment these days.
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.
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.
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. : )
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.
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.
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.
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.
I’ve noticed that I’m more prone to sensory overload in recent years. I thought maybe I was just better at noticing it, but what you say about being more social leading to more overload is probably part of it. I wonder, also, if worrying less about social interaction leads to noticing other things that previously would have taken a backseat?
That is quite likely too.
It is most likely a combination of many factors rather than just one… Age, and with it less energy and lower stamina, matters too I think.
Yes, I’m really feeling the age and fatigue thing lately
I think that emotional fatigue and less willingness to adapt is crucial in setting off the process. I am NT and hear a little less well than I used to, so I start getting more sensitive to noisy environments, Although often much less than my conversational partner, and not emotionally. Just that recently I start to co-suffer pretty much when I see for example someone to be stressed out by a noisy environment at the end of a day which might have a little bit of an emotional roller-coaster for him.
“Hearing is a complex sense involving both the ear’s ability to detect sounds and the brain’s ability to interpret those sounds, including the sounds of speech.” I wonder if it s not rather the second part that is driving the process of hearing loss.
I would like to highlight the role emotions play in the fatigue factor. Generally NTs are better at what you call “fluid adaption”. Aspergers stick too much to their plans and have often not enough empathy towards themselves to see on time that they are getting stressed out, and that they have to relax, reduce their work load or change something in their relationships to avoid physical damage. Besides the “emotional regulation” issue and the “obsessive”, it is also anxiety issues and their reduced understanding of causality due to their lack of cognitive empathy that makes appear action more urgent to them than it actually is.
But there are some people on the spectrum (of the calm ones) that seem to be much better at detecting the physiology behind the processes and reacting to them and therefore (and maybe also because of their lack of emotional input and drainage in younger years?) manage to stay pretty healthy at a high age and get really old.
I think that is highly likely.
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.
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.
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?
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.
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?
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.
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.
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.
I’m sorry you’re feeling so stuck. Sometimes life just gets overwhelming and it’s no one’s fault. 😦
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!
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.
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.
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.
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.
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.
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.
What if you start a blog about it? 🙂
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.
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).
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.
This is very well-said. I couldn’t agree with you more. I plan to send this to my family members.
Thank you! 🙂
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.
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 . . .
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… 🙂
Yes, exactly! It’s like a redistribution of energy that we don’t realize is happening. Silly brains. 🙂
Silly brains! 😀
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.
Your extension of the analogy to ways of recharging or bringing in a generator is terrific! And unplugging an energy guzzling appliance . . . 😀 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!
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.
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?
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.
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.
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).
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. 🙂
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!
Skill acquisition and development is such a mishmash. I’m planning to write more about this–especially about learning things “out of order” or in fits and starts.
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.
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. 🙂
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.
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.
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:
Thank you for the link back. I love the podcast – you explained it really well and you have a great sense of humor!
I love your videos! Thank you so much for posting the link.
This explains quite a bit.
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.
It’s definitely cyclical and sometimes the trigger is really hard to find because it’s something gradual & cumulative.
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!
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.
Reblogged this on TAG and commented:
Another reason why I think the headline “The Kids Who Beat Autism” got it wrong. Are we really prepared to talk about autism in terms of “recovery” and “relapse”? I think not.
Thank you so much for this distinction. This idea of fluid adaption is exactly what happens to our daughter. I have never been able to understand it as regression. Thanks for writing it in a way that I can now explain it to my husband and family x
You’re welcome – glad you found it helpful!
I recently found out that I have Asperger’s Syndrome and I am actually very high functioning for the most part. This post did clarify a few questions I had about my more frequent meltdowns during periods of stress and sensory sensitivities when things in my life become temporarily chaotic, then I seem to simply become able to cope again.
Thank you 🙂
You’re welcome. 🙂
Great, great article. It definitely gave me some much needed insight and a clearer perspective. Thanks so much!
Thank you for the kind comment! 🙂
The loss of most of my ability to socialise and cope with noise coincided with me developing severe depression, and this is what led to my Asperger’s diagnosis. (I think this counts as autistic regression/disruption.) I’m not sure if the depression or the disruption came first, but depression reduces the amount of resources available for coping with the allistic world because it causes tiredness and interferes with thinking.
Reblogged this on Puzzles & Spoons and commented:
I think this is what I’ve been experiencing.
How common is it for Aspies to just shut down for months? I have a son who simply stopped functioning after 5 years in college. Has been unable to work, write, move ahead. I know something of the sort happens to all kids after college, but for 9 months? We are partly aware that he is just exhausted, but what will it take to get reengaged with life. Depression and anxiety disorder are a huge part of this. And OCD writer’s block. I like the idea this might be somewhat normal, under the circumstances. We don’t know how to help.
I think this is a common in a lot of young people after college. My nonautistic daughter took over a year off between college and finding a job in her field. Is your son in any sort of therapy or does he have someone he can talk to about his depression and anxiety? Have you asked him what you can do to help? He may just need time or he may need help accessing resources that can support him in making the transition from college to work.
I wanted to take a moment to thank you for your posts (all of them), this one especially. Being ASD and working to become teacher has presented many challenges: (1) Many teachers who have traditionally taught about ASD/Autism show that video you spoke about in your other post – thinking they are being informative (even when I tell them it is not accurate – they still look at me like I have just lied to them about everything they know that they know about autism), (2) I often struggle with others who like to think I am either a hero or just like Ms. Grandin, (3) They tend to think I have out grown my issues or making too much of something “everyone else in the world has” – that one is always said in a rather passively tolerant voice, (3) they have no understanding of what I say when I tell them that I can’t even use a skill I had a day before. Add that to having learning disabilities and a doctorate and you can all but imagine the brick wall I speak to on an almost daily basis. Yes, I blog, they don’t get it. It’s nice to have someone else talk on this experience. I wish I had your writing ability – I love the way you use your words. Have a blessed night!
I admire your tenacity and your perseverance. It has to be a constant struggle, dealing with people who think they know your own experience better than you do. Adding your blog to my reading list! Keep talking – while not everyone gets it, we can make a difference for those who are open minded and want to learn. 🙂
I just find it eternally frustrating! The whole thing is never ending, I can’t find a consistent state of existence except when I reduce life to bed, sofa, read (maybe), and bed again (sleep optional apparently). It stops any future dreams I had for myself ever happening, stops me being a functional partner in my marriage, stops me planning anything of interest for the next day, or the next week, or the next month, or seemingly ever because even after slowly building back up to a bit more of an existence (feeling useful by managing housework, for example – although never to the standard I’d like) you never know which of the next steps after that are the ones which send you crashing all the way down again!!! Drives me bonkers. I can’t sense when I’m doing ‘too much’ because I can’t read the signals from my body or my emotional ‘state’, so it always feels like a surprise when I crash again, always followed by the crashing disappointment that I can’t even take care of myself after striving so hard to become independent.
Don’t know if I’m making sense anymore so I’ll stop there. Clearly I’m just very frustrated with life!
I can relate to all of this. I don’t have any great answers but I do sympathize and totally understand your frustration.
You make perfect sense, I would imagine that what you have written is a common feeling. I find it difficult to do anything other than go to work. And I have also found sleep to be difficult, sleeping only about 4 hours a night. I can only “Plan” 1 thing at a time, and hope that it goes as planned! .
This is where I am, for the past 6 years! Learning about my Aspergers has been enlightening, but also has made things even more difficult as I look back at the things I have done (mistakes made). I am having a very difficult time with me (I guess is the best way to put it). I keep being told to “get over it”, really? how do I change the electrical function of my brain? I guess Devastating is the best word for learning of my condition.
Well, I’ve been losing my speaking and writing skills recently and I have no attention span left, so I really hope these effects are temporary, because they’re making me suicidal.
I’m so sorry you’re feeling this way. I’ve had some dark days and can really sympathize with you. I hope it’s temporary and I also hope that you’re able to find some solace. Is there someone you can talk to about how down you’re feeling? While they probably can’t do anything about your skill loss, sometimes a sympathetic ear can help to lessen the pain until things feel less hopeless.
It’s not that I want to die, but if this problem keeps going, I’m afraid that I’ll become so low-functioning that I’ll have to spend the rest of my life in a home, which is no way for me to live.
I can really sympathize. It’s scary to think about where it might be going if it continues to worsen. 😦
Sorry to keep bothering you, but is there anything I should do about this problem? Would seeing a doctor help anything?
You’re not a bother at all and I’ve been remiss because I should have suggested this before. Thyroid problems and Lyme/tick borne diseases can both cause cognitive and specifically language problems. So yes, a visit to your GP to rule out those things would be good if you haven’t done that recently.
You should expect them to bring up anxiety and depression as potential causes as well. I had to straight up offer to take the Beck depression inventory to get them to stop asking me about that and focus on other possibilities.
Good luck with it.
Well honestly, I have been depressed for several years before the regression started.
Thank you so much for your answers. You have helped me very much.
You’re welcome – good luck with it.
Hi! I am so glad to have read this. I was diagnosed w/ a mild form of autism and I believe this is what I am experiencing right now and in the past. I noticed this kind of behavior when I was in middle school. I was switched from taking special ed classes to taking regular ones and it took me the entire three years that I was in that school to adapt. I did good in some classes but I struggled to keep up the good grades esp when majority of the assignments were group projects. I also had trouble making true friends as people didn’t understand why I acted the way I did (I had reflexes like the back and forth movement and I was sorta antisocial). But once I graduated middle school and started high school I did better academically and I got involved in theater and other groups and I even had a group of friends.
Right now I’m currently in college studying in the health info tech field. When I first started I majored in clinical lab tech because I’m interested in science and what’s happening in the body and I watched a lot of forensic shows. Anyway about a year in a half ago I switched majors because being a lab tech is very stressful and whenever I go to perform a procedure I would get very shaky, thus producing inaccurate results. Plus it didn’t help that I had an instructor who was very strict and she didn’t understand me. I’m doing very well in all my classes ever since I started taking classes applying to my current major, however ever since last year I’ve been having trouble communicating to my family what I need for school and just in general. It has made me very depressed about life sometimes having very dark days. Then I was thrown a curveball that my major started requiring a background by next semester or I’m unable to take the core courses. More recently I’ve been extremely emotional and I do not know how to express to my family what I’m going through thus I’ve been having issues w communicating. I’ve always been distance from my friends and had trouble keeping in touch w/ them but recently it’s been harder and harder to engage w/ socializing, even online. School starts in two weeks and I have not registered for any classes. I am contemplating taking a semester off and just focus on myself and maybe even seeing a therapist to work through them. I want to graduate soon bc I’ve been in college for so long since I graduated in high school (I graduated in 2010) and I want to be independent so bad. I really want to lead a decent life capable of taking care of myself and financially supporting myself and perhaps even my family, but I feel I let the “little things” interfere w/ that.
Also I live at home w/ my parents, I never held a job and I struggled learning how to drive. And I’ve never had serious relationship.
I live with chronic depression, and to be quite honest… your description sounds very much like a ‘major depressive episode’.
Which is/can be brought on by major life changes and life stressors? Especially when referencing to puberty when depression becomes more common, as well as mid life and the mid life crisis and on and on the story goes.
Depression too can and does happen at any age, not to sure that’s the same kind of thing that occurs in a toddler or very small child, in terms of the type of regression seen in them?
In a severe state of depression one obviously loses all social interest, a lot of times won’t speak much, loses executive function/the ability to do any self care, emotions/self regulation and ability to cope goes down the tubes…so essentially referring to a regressive state brought on by changes and stressors beyond ones ability to cope.
Is it at all possible that the regression you speak of is more of a depressive disorder brought on by major life changes and stressors, rather then the type of regression seen in a very young infant/toddler?
S, I think it’s a combination of both but I do believe I could be suffering from a form of depression. I’ve never gotten it officially diagnosed but I’m pretty convince. And none of my regressive behavior is infant/toddler like. I can still take care of myself for the most part eg, bathe, feed myself, etc. To sum it up most of what I’m experiencing could stem from depression but I do deal w/ autistic tendencies, more so lately.
And ty for replying and sorry it took me so long to get back to you.
This explanation is the only one that makes sense for what has happened to my daughter in the past 6 months. She rarely speaks and lives completely in her head. Had to leave college and does not want to go back. She is “taking a break.” I am having a breakdown. PDD-NOS is official diagnosis at 4. She was so highly functioning that many people never could see the difference. We are having her neuropsych tested tomorrow as I am at a loss as are the docs and therapists who have treated her. Thanks for listening. Your explanation gave me insight.
Thank you so much for writing this post. I’ve recently been ‘losing’ my ability to form coherent sentences when speaking to others. It was actually quite scary how suddenly it came about. I need to have long pauses in order to find the right words to say what I’m thinking, but sometimes, nothing comes out, and my apology to others usually involves ‘being tired’, or ‘being less sociable today’, even though I know it’s more than that. I’m twenty years old in the middle of my university degree, and it was so weird to see how sociable I was last year when I was making new friends as a fresher. I’ve never had a burnout before, but it’s getting really frustrating, not even being able to communicate ideas academically to my tutors and supervisors. Any tips on what I could do to regain my normal levels of speech? x
I wish I knew the right answer to your question. One thing I do know for me is that it’s important to take some time for myself. It may seem like I’m being lazy or self indulgent, but it’s actually recharging me. When I was in college, I’d sometimes take some time in the library to indulge in a reference book on a special interest (usually old movies) or just enjoy staring at the grain of the wood on the table where I was sitting. I was pretty hard working, busy, and social in college, but I always managed to find time for these pleasant zoning out spurts, to keep me… me.
So that’s what it is. Thanks again for an enlightening post. Demands of life exceeding one’s energy supply, indeed, or like a flower withered by the sun,
I thought it was an inherent inability to adapt and being a low energy person; what others find an easy sail with Rod Stewart, I’m grabbing for the lifeboat before the freezing water sucks the life force out of me. Always I have wondered why I’m tired so much of the time, even after an excellent night’s sleep (I have insommia).
I have never been able to cope with the cold, and as I get older, I find myself more depleted of energy than ever when winter rolls around with its blistering Siberian winds and depressing lack of colour. However, it’s either four or five months of snow and cold (I escape for two, thank the Lord) in my adopted country, or ten months of cold (no snow, but rain), miserable weather from my country of origin.
Today I gave interview exams to 24 students, 12 in the morn (no worries), and 12 in the afternoon. Not many, huh, and I had no classes. One was late (he’d told me he might be), and the next after was high maintenance and threw me off, and after a few more students, I couldn’t do any more, so then I had to tell the remaining students to wait 25 mins so I can eat, The poor students had to hang around doing nothing, but it was either that, or not grading them properly.
It’s amazing how some people drain the energy out of you, while others infuse you with it, but once a crack appears in the dam, the water always wins.
Interview exams to 24 students in one single day? And you think that this is “not many”??? I am NT and think that 24 interview exams a day is either not real interviews or very exhausting for any teacher. I would refuse doing that many interviews in one single day, because the quality of the interviews would necessarily suffer too much for the later students, and my capacity to mark the exam properly would also diminish exponentially. And apparently you did not even set a break after 3 or 4 interviews.
Waiting to get a bite to eat rather than having your capacity suffer, that’s excellent. Not only that but the kind of workload that would make NT’s try and hide under the desk “not here”. Totally agree about winter though, I used to like it, but now it’s simply a drag – I need more sun I think.
Seriously needed to re-read this post today! I’ve very foolishly (felt I had no choice) agreed to be contactable by phone by a client today and I’m stressing out and then feeling bad because I keep thinking ‘everyone else copes with simple things like this, why am I such a failure?’ And actually I’m not a failure, I just struggle with verbal communication more and more these days. Realistically I always have struggled – it’s only in more recent years that I’ve set my life up to minimise the difficult bits where possible, but of course that means that some times feel particularly hard now (whereas before it all felt tough!). Anyway, this thread has grounded me better again so cheers Cynthia 🙂
this couldnt have appeared in my feed at a better time.
im going through a REALLY tough spot in my life, and im not being the person i want to be, or know i can be… ive lost it. this is not the parent i wanted to be either. i feel like ive just been barely making it.
this was just mind blowing. this is exactly what is going on. ive just lost my ability to do what ive been able to do because im super stressed. replace that “puberty” with “unexpected pregnancy” in that one paragraph, and thats exactly it. its bad enough that pregnancy hyjacks your brain, but being a surprise, for an autistic, yeaaaah thats not been pretty.
wow. this post has changed my life today. thank you.
I went through the regression in my teens. While certain sounds were more tolerable, others became unbearable. My meltdowns were and are much more frequent and violent than in childhood. I have to wear earmuffs out in public and am still anxious. I need someone with me to help me sift through the sensory onslaught in public. I cannot work or participate in life in general. I am very much alone, drowning in a world full of people.
Thank you so much for this article. My oldest son just returned from college and it’s been a tough summer for all of us. Meltdowns like I’ve not seen since he was a kid. It helps me understand him, and I shared it with him (he recognized himself immediately) so he can know that it may be “typical” for a non-neurotypical person like him. It also helps us plan for the next few steps – a more gradual and gentle entry into adult-hood. And reading all the comments from other people gives us ideas of things to try. Thank you, thank you, a thousand times thank you.
I found your season change and sensory issues post yesterday via someone ‘s share on Twitter. I find both of these articles very insightful. Thank you for sharing. I’m sure it’s not easy to open yourself up to public scrutiny. You are able to explain to me what my just turned 10 year-old son cannot. I appreciate those who left comments as well. I often think of myself as a translator for my son, helping him learn how to communicate with others and vice versa. But sometimes I wish I had an adult with Aspergers in the room w me so they could help me understand my son better and be able to help him more. Thank you.
Thank you for writing this. I wish more was available on the topic of autistic regression in adulthood. My coping skills and overall auditory sensitivity increased significantly in my teens. I wonder if societal factors like extreme bullying contributed to developing a complex of anticipatory anxiety that has followed me from my teens into my 30’s.
I agree, I’d like more info too. I found myself struggling more (or more noticeably to me) in my 30s & that’s probably what prompted me to get a diagnosis a year ago. Not sure if I’m coping less or have just given up some of the struggle to conform?
I got sick of conforming. There are some people who are plain selfish and prejudiced toward anyone who doesn’t share their views. I am as God created me: a fallen person in a fallen world. He gives me the strength to live with autism (as well as the few people and services I do have) in a fast-paced and impatient society. I also say no to more than I did when I had a mom at home to help me cope with certain things. This is better than loss of control and subsequent loss of freedoms.
I definitely say ‘no’ more now. The psychologist who diagnosed me said that I ‘cope by avoidance’ and I think he got it spot on 🙂
Increasingly in my marital difficulties I find myself lapsing into non verbal mode for short periods. It’s both frightening and liberating. It’s frightening because when I am “there” I’m not “just an Aspie” but a so called “classic Autistic.” However that is also liberating because after all, that is who I really am.
My “regression” has always seemed to hit after neurological assaults, like a car accident with head injury. I went all the way back to about 12 with meltdowns etc and a year later, all MRIs OK, but still way regressed.
My dr said it was just that I fought to act NT so hard and now I cannot. I like that explanation.
I will never try every again to be what I am not . It is hard, but easier than faking NT and not even knowing it!
Fluid adaptation, I became very good at it, and it ultimately was my undoing. I learn best coming into a new environment, (e.g. university, new workplace) lots of feedback, a different way of looking at things, try, fail, retry with feedback, succeed. Interest + feedback = rapid learning.
A great strategy to coast on, but what happens when presented with unlimited choice? (curse you capitalism!) What to use one’s powers of adaptation for when surroundings grant no feedback? Now I’m regressing (I would easily have passed as NT just a few months ago), burned by my most recent experience in a job I put way too much mental effort into, only to watch it evaporate (company finances were unstable), out of work in a declining field with no sense of direction, conflicting advice, slowly declining savings and no obvious path back.
I’m so grateful for autistic community sharing your thoughts. Was thinking I’m completely crazy, didn’t understand the way I feel and behave after moving to the new country 2 years ago.
I’m absolutely happy here, my life’s at its best, met wonderful people, amazing work culture and school system. And at the same time I’m depressed as never, have extreme level of anxiety, troubles with executive function and get easily overwhelmed. I’m often thinking about me from the past, doing so good 4-5 years ago, and couldn’t understand where is that person.
Now it’s clear to me that it’s just the way my body and mind react to such major change. Even it’s a positive change, it requires time to adapt, develop new routines, connections. All I need is to give myself time and it will come back, right?
Thanks again for your posts!
I think I keep getting minor “autistic regressions” from time to time due to small changes in my life. Recently, my routine and daily planning has gotten disrupted altogether because I’m confused about some projects and also because the doner shop where I’ve been having my “dinners” is getting a renovation and is closed. As a result, I have become very absent-minded again. On the other hand, my social skills –at least my confidence about social life– are much better these same days, probably because I’ve been doing some cognitive self-therapy about not seeking other people’s approval, respect or love.
I just stumbled across this blog and it’s so satisfying to read your words that mirror my own experiences. I have always felt so alone with these difficulties. I have been having the worst year of my life due to perimenopause and also switching careers (switched from a great but boring job to teaching) and I’ve found the stress of this year has made me waaaay less functional than I used to be and that has made it even more stressful as I’ve gotten in trouble at work because of being less functional, and all I can say is ‘I don’t know why I did that / didn’t do that’ because I forgot something important or made a weird decision. So many things that have happened this year I would never have allowed to happen when I’m functional.
need tips for coping with this in a way that is supportive and healthy