pretending to understand and the nightmare of words

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I find myself always pretending to understand what people are saying or what's going on around me.

When I was a little kid, I was echolalic and would repeat the last things people said to me because it kept the words in my head and it sort of "bought me time" to try to make sense of them. These days, I know how to respond normally when I don't understand, but it feels like saying things that are echolalic (maybe it is echolalic, still, just "delayed" instead of immediate) because I'm just saying things based on what other people say, and because it buys me time to try to understand (the key word is "try" ....I may never figure out what's been said to me).

Someone will say something to me and I don't get it, but I read the person's tone and/or the pattern of their words (I seem to either understand the words or understand the tone/pattern....but I don't seem to be generally able to understand both at the same time) and I respond appropriately based on a script I know and by adopting the corresponding tone of voice for that script--or by just copying the other person's tone. For example:

My dad said to me yesterday, "There are no creatures of habit here, are there?" After a moment, I managed to understand that he was referring to me and himself, and that he was being sarcastic ("facetious" is the word I think he might use because he's always reminding me that he's "often" "being facetious" when I take him seriously and he uses the same tone he used yesterday.....but I don't know what the word "facetious" means) and that's all I understood. I had no idea what he was talking about. But I said, "No, none" in the same tone he used. On the surface, we shared a joke (or something like a joke). In reality, he made a joke and I have no idea what it was....I only know it was somehow humorous because of the tone of his voice combined with the pattern of his words.

This happens all the time with him...often, I don't know who he's referring to (if he's referring to people in some way)....sometimes I don't even know what any of his words mean (really, I don't get it at all). But I almost always know, based on the combination of words he uses, whether or not I should say some variant of "Yes" or some variant of "No" , and sometimes I can sort of rephrase his words and parrot them back at him....and this makes it look like I understand. I do the same thing with his serious comments.

This happens with other, more complicated verbal exchanges, too, and with other people (everyone, actually)....but the thing with my dad is the only example I can explain....I can't explain an exchange without some marginal understanding of the other person's half and the example with my dad is the only one I have where I know something about the other person's half.

I hate that I do this kind of thing....people think I understand them and I don't. And because people think I understand words better than I do, they expect me to use words better than I do.....

I'll say something, like three fragmented words or an odd-sounding sentence and (I assume it sounds odd because:) people ask me to explain what I've said/am trying to say, and when I don't explain (I go silent), they just keep pushing me to tell them what I mean or "What I was going to say."

I hate it when people do this because the truth of the matter is that I said the only thing I had to say and I can't explain any better (at least not without time to sit in silence and think, although sometimes I can't explain at all) and the more they push me the harder it becomes because I feel pressured and the pressure distracts, confuses, and upsets me--and then I usually end up just saying things that sound good (things I know I could say based on what the other person has said, or that I've said before, or what other people have said) because I'm not allowed to just go silent and I can never think to say, "Those are the only words I have right now" or "I need a few moments/minutes" or "I can't explain" ...... I can't think of words for why I'm silent at the same time as I try to think of words for something else (like what I'm being asked to explain or communicate in a proper sentence)--it's not possible.

Honestly, I'd rather just say nothing than keep on pretending to understand, but I can't do that because people don't understand silence....they don't understand because sometimes I can use words well and in certain situations with certain people I actually can follow most of a conversation and say genuine, articulate things.

I can't explain this verbally--I've tried over and over and over and over and it doesn't work: The words aren't there, people's questions and responses to whatever I manage to say just confuse me, and I suspect that I say things I don't mean to say--I choose the wrong words or something.....I don't even know how much people understand of what I write about these things, because (for example:) the people who have read my writing about this never seem to get it that when I go silent and don't explain it's because I can't explain--and I've written about it in detail.

I'm like a robotic tape recorder that imitates a person having a conversation. But nobody seems to know this. And I really wish that at least some people knew. It seems like if people knew, if they understood, then maybe I would have more real conversations with people and less misunderstanding....and then I'd feel less alone and invisible and frustrated.

I almost miss being a kid, when people were always laughing at me, getting mad at me, or going silent when I said things.....because at least that kind of interaction was real in that people could see that I didn't get it or that my words were off, and so they could see a real part of me.....because back then, my recycled imitations of other people were less well-developed and less numerous, and I used them in the wrong places at the wrong times. And even when the imitations worked, I didn't realize they were imitations....I didn't realize other people don't "converse" like I do. I think I was happier not knowing.

I think it's one of the things that isolates me to special interists. If all social interaction feels fake and half understood to me, than is there any wonder I try to surround myself with things that aren't?

It helped a lot when I stopped answering my phone. Texts are sooo much more meaningful and heartfelt for me, though I realise that they are the opposite for most everyone else.

Anyway, wanted to wish you luck in dealing with this.

It sounds like you may have CAPD, or Central Auditory Processing Disorder. I'll let you look it up on Wikipedia yourself, but it essentially means the brain has a hard time processing sound as meaningful information sometimes. It's not something every aspie has, but it's associated with us more than NT's. I've often had times where someone would tell me something and I'd nod and then go about my business, only to realize I really just didn't 'get' what I was just told. If they were instructions, I'd either have to go back and get them again or just hope that it made more sense when I started doing the thing I had to do.

As a kid, I think I was constantly saying "what?" to people, so much that I cringe when I have to say it myself now or I even hear it. Kids have a hard enough time processing verbal instructions WITHOUT CAPD, it was just a big pain in the ass if you did. Alas, there's no cure, just try and concentrate when you're being told something important.

i'm just glad i'm not the only one.

I can totally understand what you're saying (I'm not pretending I swear lol) I experience something very similar, my childhood (basically pre secondary school) was the happiest years of my life, since then life has been one utterly confusing living hell, not so much this year as I've come to understand what Sensory processing disorder actually is by watching videos of other people with more insight explain how it affects them & relating.

But yeah I pretty much pretended up until the start of this year that I understood a lot more than I actually did in every aspect of life, so much so I can't be certain if I've actually got worse as my parents think so, or whether it's because I've stopped pretending to be ok, my long term memory is warped & sucks especially for remembering myself if that makes sense, so I can only be certain about the present really, there's only so much information you can glean from mind photos. I was wondering if I have a learning disability as well, do you have anything other than Aspergers diagnosed animalcrackers?

Sorry I was listening to this song when I saw your post, thought it related quite well so had to post.

The Joy Formidable - Whirring

[youtube]http://www.youtube.com/watch?v=a2BUEzdjfpY[/youtube]

Thanks for the replies, everybody--makes it easier to deal with the whole thing when somebody else actually understands...understanding is priceless.

I know what you mean.



Same for me. I prefer writing to talking....understanding happens way more often with writing, and it's easier to say what I mean.



Thank you!



Nope, I don't have CAPD. I was assessed for that before I was assessed for ASD. The audiologist said I had "extreme sound sensitivity" but not auditory processing problems.



I can imagine how horrible that would have been for you....knowing that I should say something when I don't understand is a relatively new revelation for me (as is knowing when I don't understand) and I still have trouble with actually asking questions--even just "what?"--but I know what it can be like to try really hard to understand and not be able to.

I have a similar experience with instructions. I often give up trying to ask for them again though, because I just can't make sense of what people are telling me and I often can't explain which parts I don't understand (because sometimes one part not making sense=the whole thing making no sense and I don't have a starting point).



When I realized how much I wasn't understanding and really started trying to stop pretending I did, pretty much everyone in my life thought I'd lost my mind and the better I got at figuring out when I didn't get it and saying so, the more concerned people became--thinking that whatever was wrong with me was getting worse. I was only diagnosed with ASD this spring--with the diagnosis, other people seem less worried. I can relate to the wondering if it's getting worse, though....although I'm starting to accept that, for myself, it's not really worse--it's the same as it's always been....it just feels worse and sometimes seems more pronounced because I notice it.



That makes a lot of sense. My memories are fragmented and out of sequence....I like your comment about mind photos--I can relate. It's hard for me to find clues about the missing pieces of a memory/mind-photos from the images themselves, or to sift through them for general ideas about myself....I have a hard time "connecting the dots" with a lot of things.

I have Sensory Processing Dysfunction, I think I have dyspraxia (have to ask my OT if that's what she was trying to tell me when she was talking about praxis and motor planning with reference to me, a while back) and ADHD-combined type as well as the ASD/Asperger's diagnosis, but I've never been diagnosed with specific learning disabilities. I'm just curious: what's causing you to wonder about if you have learning disabilities?

Wow thanks! I can totally relate with the sequencing, connecting the dots etc, I don't feel as unique with my problems now which is very comforting, I need an OT or someone to help me out, my life is one lifeless shell right now, how do you go about that?. LD?: When looking at my secondary school reports they pretty much all say "He looks like he's paying attention but isn't, has great potential but isn't putting enough effort in...." teachers would always tell my parents I'd scored in the top however many of children in my year, I guess that's where all the "has great potential" crap stemmed from, thing is the damm test was a multi choice CATS? test I have great logic so elimination isn't hard, I wish I didn't as it's just allowed me to shoot myself in the foot. Anway things have been very fuzzy since then & especially since the age of 18, I had CFS & later Depersonilization diagnosed which I now figure out was mostly Major Depression caused by extreme stress.

Thank god for my last obsession or I'd most likely be stuck in confusion still, I do feel clear for the first time ever really. All of this along with the fact anytime I see my doctor, physio, or anyone that basically I need to both recall information & also take it in, I go away from the place confused, it almost feels like my brain is still working away in the background for quite sometime after, all I can later recall about the experience is a very general understanding if lucky & very little detail. I need some help, I've given up trying to be independent & continuously screwing myself over, I can only imagine people think I'm more capable than what I am or I'd have a SW, OT or some support group I could go to right? or do you need to ask for these things?

I should also probably add that long term memory for things I have/thought (I'd) learned seems to be extremely poor & sometimes I think I can recall something but I end up recalling it wrongly so I get told. It's seems like the things I have taken in from my obsessions over the years I still know about in some capacity, even if I'm not still obsessed - but only in my own mind, if someone happened to be interested in any of them I'd find it impossible to verbalise or even write down much at all about them.

Well, for an OT specificially: if you have a physiotherapist, you might be able to ask them if they know any OTs who work with folks with AS. I just looked up Occupational Therapists in the phone book and online, and called every one of them asking if they did sensory integration therapy and if they worked with adults.

I think you probably need to ask for supports like social workers and support groups. I imagine "high functioning" individuals often do, because the problems are invisible to other people. Nobody knew that I was having such a hard time with life, because nobody asked me if things were hard or if I could do things--they just assumed I could do things and that it was easy (or maybe just "not hard")....lots of people still do make these kinds of assumptions.

If you're in the UK, maybe you could contact The National Autistic Society and ask them if they know how you could get an OT, SW, or other support set up (www.autism.org.uk). They have an information hotline, I think.




Oh man, I think I can relate to that....."if you only applied yourself, you could do so well" is something I never want to hear again, I've heard it so many times--I try as hard as I can, but people don't know how hard it is when I have to work with information/come up with answers that isn't/aren't already laid out in front of me (like in multiple choice tests), so they think I don't try. When I was in college, one of my professor's knocked me down almost a whole grade, taking marks off a nearly perfect paper I managed to write after over a month of doing nothing but writing (lots of nights with no sleep), and when I asked him why he took off so many marks without explanation, he told me it was because he "knew" I could do better. (he'd only indicated a couple of typos and there was a note about needing to write for a "general audience", but that was worth a deduction of five marks, apparently).

ASDs can cause learning problems, and it seems that my academic/learning problems are just part of the autism--but you can have AS and also have a learning disability; Do you see a psychologist or could you? I'm pretty sure you have to see a psychologist to be assessed for LD.




That's interesting--I can totally relate to going away from appts feeling confused because I can't understand/follow the interaction. But I usually have the opposite understanding of things like that: I remember lots of little details and can't put them together to understand the experience.... I'll remember some of the words someone said, or some inscrutible body language they used, and bits of the room, and that's it. I'll spend a lot of time trying to figure it all out, and more often than not, I can't.

I think maybe I have similar issues with recall and information processing: I can't think of my perspective/thoughts and also try to figure out the other person's.....it's hard (impossible a lot of the time) for me to think of words/information to express at the same time as I try to and understand words/information being given to me. I have to go back and forth, and if I can't do it fast enough, the whole thing is a disaster....unless I can find a script and shift into autopilot--talking without meaning....but then it's still a disaster in a way.

When I need to remember something or I'm asked about something I technically know about, I also have trouble bringing the information to mind. Part of it is that I need really specific cues to remember things (I got through many essay exams in school by writing practice essays and then simply re-writing the essay or large pieces of it on exam day).....I think it's an "executive functioning" deficit, but I'm not sure--it could be more of a language thing for me....when someone asks me about something, if the question isn't really specific, then their words don't mean anything and so I can't link up their question with any of the knowledge stored in my brain. Then there's the problem of turning that knowledge into words, if I can remember it.....not easy unless I quote from something I've written or read, and people don't seem to respond well to direct quotations. Is it the information recall itself that's hardest for you?

Thanks for the heads up on the NAS website, I just checked it out but sadly there isn't anything at all in my area, it all seems to be geared towards low functioning autism from the pictures I can see & the general tone of the site. That sucks about the downgrading of your marks, I can't believe the way some adults act, I got humiliated in front of class many times by teachers back in secondary because I couldn't answer direct questions, didn't know what I was doing etc. I gladly live in the present so none of the past bothers me though.

I don't see a Psychologist, I did have one come along with an apprentice as part of the Autism spectrum disorder team (a GP reffered me even though I'd asked to see someone about ADD, I was happy about it in the end though) that came over from the North East a couple of years ago, she was the one who diagnosed me with Sensory Processing Disorder, she also stated I had none of the features of social impairment/interaction that was defined under an ASD in her report. I always play out meetings with my doctor the day before going to see him & what I want to convey to him, I write it all down, when I go to see him I just say hello & then start reading out what I've written down, I felt a bit stupid doing it at first but it doesn't bother me now because it's pointless just pretending.

To be totally honest I'm not sure if it's the information recall or the fact the information is only partly there, so I end up having to guestimate in real time which other peple don't need to do it seems, hence I look like I've stalled but it feels like I need to really concentrate on the process of recall, I have to manually bring the picture into the centre of my mind then manually grab in my mind something that relates to it, then the other related things pop up partly & I have to make some sense of that..... the whole process is incredibly slow, on one psychometric test in the past my processsing speed was down as 80 - hard to say if it's the speed that's the root or the fact my brains works in a bizzare way that's causing me to take a long time, strange because I have an incredibly fast reaction time - I remember some light flash reaction test in science where I came second behind a semi pro swimmer speed wise.

Maybe I was born with a brain injury, my mum's finally going to get on the phone to the ADD "specialist" (he told me ADHD-PI didn't exist then later diagnosed me with it in a report, my mum now tells me he was helping out because of a lack of ADD specialists, I never picked that up or I wouldn't have wasted anymore time seeing him again & listening to him talk BS about medication/drugs.). I've emailed him twice with no reply 4 months back now, even sent an email to his secretary who assured me he definately got it, my doctor sent a letter to him at the start of June, still with no reply not even and acknowledgement because he agrees that I should see a Neurologist but has to run it by the ADD "Specialist" first.

Last edited by delic on 20 Jul 2011, 10:20 am, edited 1 time in total.

Aw that sucks--sorry you couldn't find anything!



It's understandable to not want to be misdiagnosed with ASD.... ASD and ADHD share a lot of characteristics it seems.



Good idea!



That sucks that you haven't heard anything back...seems kinda weird that your GP has to run something by the ADD specialist if he isn't really a specialist and isn't even getting back to anybody.

I hope that you get to see someone soon!