Lost

We’re going on hour 26 (minus, uh, 8? hours of sleep last night) of panic and/or meltdown.  I mean, seriously?  Is this real?  (Ed note: The situation was not helped by the fact that I didn’t take my AM meds.  Not at all.)

Try something for me?

Turn on the TV to a strange channel (You don’t have strange channels, you say?  Here, the TV never, ever leaves Food Network.).  Now turn on the radio.  Now bring something up on your computer, too, with visuals and volume.  Keeping your eyes on your computer, I dare you to report, totally accurately, what happened on the TV… three days later.

Welcome to my world.  I don’t know what on earth is going on, but something’s falling apart as I age.  I don’t remember this happening when I was young, but anymore, it’s constant.  Okay, what’s constant?

Well, a conversation with me goes something like this:

– Brief exchange occurs
– I either 1. don’t hear or 2. don’t understand a good portion of what you’ve said  Not to mention, all nonverbals evade me.
– I fill in the blanks of what I missed, though not intentionally or knowingly.  I really don’t know how or when I do this, but I simply must be doing it, somehow.
– Unspecified period of time later, I call up the exchange… which has, most likely, been distorted in my memory
– I relay the exchange to a third party.   Now, what is in my head may or may not (usually the “not”) be what comes out of my mouth.  If you’re lucky, you get a sensical, believable, but incorrect rendition of what transpired.  At worst, you get “kitty cat.”

So, here’s this tidbit that I’ve misheard, misunderstood, missed all the nonverbals, misremembered, and miscommunicated. 

It’s like a game of telephone, isn’t it?  By the end, what have you got?  A MESS.

I’ve been accused of lying all my life, even by my family.  I do believe that I’ve consciously lied twice in my life, and even then it was because my mouth misfired but I didn’t know how to explain “my mouth misfired” and then I stick by what I said, too ashamed to change it and look stupid.  Don’t ask me how being called a liar is worse than looking stupid…

I’m totally and completely exasperated.  I wish I knew how much of what goes on I truly comprehend… a LOT less than it would appear.  The problem is that I sometimes do make sense, only I have literally no idea of what I’ve said and no memory of having said it. 

In addition to the receptive and expressive language issues (which have left me terrified to open my mouth to anyone by Mom), my sensory system is whacked, I tell you.  I’m literally getting sick when my watch alarms.  I can’t bear church.  Things are getting mixed up, too… I’m hearing lights and seeing sounds.  All the while, mind you, trying to converse.  Oh, and I still lose my words on a regular basis.  I’m starting to question my sanity.

I have no idea whatsoever of how to fix this.  I have no idea who knows how to fix this.  I feel like I’m too complicated for anyone to be able to help me, honestly.  I have an evaluation with a “really, really good” speech therapist coming up… and I’m hoping and praying she’ll have answers, at least the language issues.  In the meantime, staff is watching Friends with me and helping me to analyze and retell what happened.  I find that, if she explains, I can understand bits and pieces, but there is no whole at all.  No plot line.  Also, no memory of what we watched, shortly afterward.

If anyone has any other suggestions for anything, even of who would know what to do, please let me know.

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13 thoughts on “Lost

  1. You wrote:

    “So, here’s this tidbit that I’ve misheard, misunderstood, missed all the nonverbals, misremembered, and miscommunicated…

    “I’ve been accused of lying all my life, even by my family. I do believe that I’ve consciously lied twice in my life, and even then it was because my mouth misfired but I didn’t know how to explain ‘my mouth misfired’…

    “I wish I knew how much of what goes on I truly comprehend… a LOT less than it would appear…

    “I have no idea whatsoever of how to fix this. I have no idea who knows how to fix this. I feel like I’m too complicated for anyone to be able to help me, honestly…”
    _______________________________________________________________________
    Who gets to tell you what or whether you have “misheard, misunderstood, missed all the nonverbals, misremembered, and miscommunicated”? Who defines and declares all of this to you and for you?

    Many of us have “been accused of lying all (our lives), even by (our) family.” On another important front, I was the only person telling the truth, and yet my employers called ME the liar. The fact of the matter is that ‘normal’ people – whose lies, large or small, are completely interwoven with their daily existences – simply do not believe that there are ANY people who DO NOT lie for a living.

    On what basis have you concluded that you “truly comprehend a LOT less than it would appear”?

    I would be interested in knowing what medications you take, for what specific purpose you take each one, and the autism-related credentials of the prescribing physician. It may or may not surprise you to know that very, very few physicians have any pharmacology expertise relative to the (usual) senstivities of autistic physiology. Some of the issues with which you are struggling (panic, “hearing lights and seeing sounds,” etc.) could be related, in at least some measure, to medication types, dosages, etc. You may be over-medicated, under-medicated or mis-medicated.

    My psychiatrist is a nationally recognized expert on autism pharmacology, among several other things.

    Finally, while you may be “complicated,” you are not incomprehensible. Autism is an inherently complicated and enigmatic condition, but that is not the same as you, your person, being incomprehensible. You will remain “complicated” to everyone, but you will remain “incomprehensible” primarily only to those too lazy, too uncaring and/or too presumptuous to bother educating themselves. As you get older, you learn to just let some ponies run.

    How old are you? I have forgotten.

  2. I know I’ve mis-everything what people say because later, my mom will me when she (or they) actually said/meant, and I was totally off base. Given the amount of times I’ve ended up in messes, there is definitely a major communiation barrier. Also, I know it happens because I am simply confused, can’t understand, a lot of the time. I literally feel like I’m in another country and can’t understand the language.

    My doctor is a pediatric neuropsych who specializes in ASDs. She’s the best in the city. Her son has autism. She truly gets it.

    I’m 23.

  3. Hi! My name is Sarah and I found you on the AG playthings board. I post as Jane Tiberius over there, and for years, I’ve had various teachers, physical and occupational therapists, and other people in my life who believed I was on the spectrum myself, though, because I’m like you, with a lot of writing skills, etc, none of my psychs have wanted to diagnose me at the right ages.

    I’m 27 now,and finally, the shrink I’m seeing for other issues brought up the possibility again, based, on all things, on the way I speak and modulate my voice. I already was shot when it came to eye contact and talking in groups and things, and met a lot of the other sensory issues for years now. Reading your blog for the last few weeks has helped me to learn a LOT about autism and has been a really great resource. I mean to pick up a copy of your book when I next get paid. Anyway, after reading this entry, I totally do the same thing with looking stupid and not correcting myself later. It’s like my wires get crossed unless I write things down, you know? So frustrating!

    • Welcome, Sarah. Glad to be helpful. Girls who are anything resembling high functioning have a heck of a time getting diagnosed, in my experience. If I had been a boy and displayed the same symptoms, I would have been diagnosed way sooner, I’m convinced. It’s good to have the right label and get the right help, though!

  4. Thanks for your responses.

    I’m exactly twice your age. Nothing you have described in this post (or any other) is at all foreign to me. I may have used different words, but at some point in my life I have struggled with and written about everything I have seen you mention. You may feel like you are the only person alive who is “like this,” but you are not.

    I was intrigued that you wrote: “I know I’ve mis-everything what people say because later, my mom will (sic) me when (sic) she (or they) actually said/meant, and I was totally off base.”

    I was intrigued particularly by “actually said/meant.” Are those synonyms? Has it ever occurred to you that you may have perfectly grasped what someone SAID, but the “communication barrier” occurs because they did not say what they MEANT?

    While that “said/meant” does not literally have to match for “normal” people because they either have some instinctive way to understand the unspoken gaps and codes of language between themselves, or they really don’t care how well or poorly they truly communicate amongst themselves, people with autism LACK that “instinctive way to understand the unspoken gaps and codes.”

    I live and die by very precise words which convey what people truly mean – because I have no way to navigate the world apart from those concrete guides. Yes, language is “fluid” to some extent, but not from day to day and conversation to conversation! And yet, that is how “normal” people sloppily speak. It works well for liars, especially: “I may have SAID ‘green’ but I MEANT ‘orange.’ ” I’d be willing to bet that more often than not, other people said ‘green’ and you heard ‘green’ – but they MEANT ‘orange.’

    How would you have known that? Is that “major communication barrier” caused by some lack in you, or some gross linguistic imprecision in them? Think long on that.

    You wrote:
    “Given the amount of times I’ve ended up in messes, there is definitely a major communiation barrier. Also, I know it happens because I am simply confused, can’t understand, a lot of the time. I literally feel like I’m in another country and can’t understand the language.”

    Everything you wrote in that paragrapgh is true – until “can’t understand the language.” You understand the language. Most people in the world do not know how to properly USE the language, or they simply don’t care. Like I said, imprecision is a great tool for liars, among others. There are certain advantages to deliberately misusing language (e.g., a person SAYS one thing, but MEANS another.)

    That is a commentary on THEM, not you. I would urge you to flip around your currently confused analysis of who is communicatively impaired when it comes to the use of language.

    It is not you.

    It is a fact that most, if not all, relational problems – personal or global – begin with a degradation of the language. You will notice it in phrases like, “Well, that is what it means to YOU, but that is not what it means to ME.”

    Well, what does it mean if we both drop dead? THAT is usually the actual definition of a word.

    The burden that you will probably always have to bear is that you live in a world wherein it will remain perfectly acceptable to most people to SAY green even when they MEAN orange. You will likewise probably always have to bear the burden of people faulting YOU for the failure of communication.

    Just because they can.

    The irony is that you communicate far, far, far better than ANY “normal” person I know.

    I understand your language. Do you understand mine?

    In a different recent post, you wrote:
    “Something my mom noticed very early about me is that I kind of, um, don’t much care about other people. Honestly, I treat them a little like furniture, or just a means to my own end…

    “This is also not to say that I’m not sometimes good at faking it…There’s no feeling behind it…

    “Conversations with me basically have to be about me or my cat or dog for me to even try to participate. Your work? Your friends? Your anything? I try hard to pay attention, but I just can’t…Feigning interest just isn’t an option for me, or I’d try it. I don’t feign what I don’t really think or feel at the time. Not capable.”

    There are a couple of brief things I want to say about these words:

    If you truly mean that you “don’t much care about other people,” then why do you write this blog and then allow comments? Sometimes, you even ask if anyone has ideas that might help you. If you truly mean to say that ALL other people are nothing to you beyond “just a means to (your) own end,” then how long do you expect any person to stick around to serve only as an ear to your monologues?

    And you combine all of that with an explanation about how you cannot “(feign interest)” in knowing about anybody else’s “anything.”

    It is a well known fact that people with autism most often have zero interest in “small talk” or talk that lacks purpose, meaning and relevance to anything truly important in life. Who cares who wins American Idol? Who cares if you shopped for underwear at WalMart yesterday? Who cares about the latest fashion trends? Who cares, and why? Why, why why????

    Well, 99% of the world cares – because they are shallow, frivolous about life, and simply insipid.

    THAT is what you cannot “feign.” And you have confused the failure to “feign” pointless, shallow things with a failure to care about other people. They are NOT synonymous.

    I think that it is not all people that you will forever find as nothing more than “like furniture, or just a means to (your) own end.” (That would make you a sociopath, not autistic). The reason I think that is because, while you may not grasp it, I know that you are not the first or last autistic person in the world, and you are hardly alone. You aren’t even special or unique in your difficulties. We are all around you, and we cannot “feign” any better than you; we cannot play the game of “words-can-mean-whatever-you-want-them-to-mean-and-you-can-mean-something-you-did-not-say-or-say-something-you-did-not-mean” and then blame my autism for the “major communication barrier.”

    You are not a shallow person, and some day you will stop hearing people who try to convince you that being shallow = being interested in other people. Some day you will stop listening to the lie that “small talk” is next to godliness, and obligatory in polite society, and maybe even in Heaven. It was your own Lord Who warned that God will judge each of us for wasted words we have spoken (Matthew 12:36)

    There are some things that ought not be feigned. An interest in unimportant drivel is probably one of them.

    Some day, you will meet one or two people who approach your depth, and you will not have to “feign” your interest in them. Do not settle or “feign” for lesser connections. As a person with autism, you will never have the psychic energy to support both shallow “feigning” and true connection.

    You may spend much of your life alone. But even so, you will never be able to “feign.” There is a third way.

    I am of an earlier generation, before anyone knew “what” we were and how we struggled, and why. We had mothers who didn’t know what nobody could tell them, and I remember one doctor patting me on the head 40 years ago and assuring my mother that I would “just grow out of it some day.”

    Nobody knew what “it” even was.

    And I never grew out of it.

    Because of technology, you have access to people all across the world who have been walking your path for decades. One day, your monologues will become dialogues.

    Finally, with your inability to “feign,” you sometimes mention not “feeling” as one of its components. Emotional/feeling dysregulation is common with autism. To physically survive, you will eat when you do not “feel” it. What you feel or don’t doesn’t matter a bit – only the act of eating matters. It is likewise with caring about others, praying, loving and living: what you feel or do not is not what matters. It is what you do and are that matter.

    It appears you have an excellent physician.

  5. Cindy, I’m sorry, but I can’t understand 95% percent of what you wrote. This may have nothing to do with you or your writing, as I can’t understand probably 75% of what I read these days. A book I read a few years ago is completely confusing now.

    When I say I misunderstand, etc, what I mean is that their language literally sounds like another language to me. I can’t process it. I can’t find meaning in it at all. I can sometimes grab a word, translate it in my head to pictures, but then ten other words have gone by and I don’t know where we are. I can’t even understand the TV anymore.

  6. You don’t have to apologize to me.

    “I can sometimes grab a word, translate it in my head to pictures, but then ten other words have gone by and I don’t know where we are.”

    Once again, I have understood and experienced what you have written. In my case, my *adrenaline response can sort of “get stuck,” and concurrent with that very powerful physiological event, I lose my capacities and abilities to “process” and modulate stimulatory input/information. Since I am very often not able to physiologically self-“un-stick” the extreme *adrenaline response, I have to use a couple of medications that do that for me.

    *Note: I am using the term “adrenaline response” (“epinephrine is a hormone that is secreted by the adrenal medulla in response to stress and increases heart rate, pulse rate, and blood pressure, and raises the blood levels of glucose and lipids”) somewhat broadly, so as to include adrenaline but also NOT EXCLUDE related and/or similar substances, events and effects (e.g., norepinephrine , dopamine, etc.

    The only reason I have mentioned this is to say that there are powerful physiological neurotransmitter and hormonal processes and responses that occur – and sometimes wildly misfire – in our brains that can and very well may be responsible for the (increasing) difficulties you’ve described. Given the usual physiological tendency towards hypersensitivity, people with autism need meticulous oversight of medications and dosages, due to such things as changing physiology, internal and external stressors, etc.

    A mental picture that may help you:
    With “normal” people, there may be six degrees of deviation or margin of error with which a physician has to work before medications, medication protocol and dosage adjustments have huge potential to turn catastrophic. With a person with autism, however, inherent physiological hypersensitivity empirically and vastly reduces the margin of error between therapeutic and catastrophic. In other words, dosages and medications and protocols that may be “standard therapeutic practice” for the average “normal” person is most likely wholly inappropriate and potentially and rapidly catastrophic for people with autism. Because of these factors, a fresh and meticulous and soon review of your current medication protocol may be something your neuropsych will want to do.

    In light of the fact that you wrote that “their (spoken) language literally sounds like another language to me” and that “I can’t understand probably 75% of what I read these days. A book I read a few years ago is completely confusing now,” I suspect that you may be experiencing concurrent central auditory processing difficulties and dyslexia. “There is anecdotal evidence to suggest (central auditory processing) links to autistic spectrum disorder, dyslexia, middle ear infections and lack of oxygen at birth, as well as occurring in association with aniridia (the absence of the iris.)”

    Some day, maybe the other things I wrote will be more meaningful to you. In the meantime, I would just like for you to understand that I do not see your increasing difficulties as being incurable regressions, but much more likely quite treatable (and probably related) conditions that are just coalescing in you right now.

    You are going to be okay.

    • Again, I don’t get a LOT of that. But how bad does it have to get before it starts to get better? Will it get better on its own? Do I need to see a doctor? Right now, my therapist is just saying that adults do not regress…

  7. You do not have to “get” any of it for my sake.

    You ask: “(H)ow how bad does it have to get before it starts to get better?”

    I am unclear as to which “it” you are referring, but the truest answer to that kind of question is, we never know. Lots of things in life “get better,” and lots of things do not. Some things “get better” but never really leave. Some things leave and then come back.

    There are endless variables. Nevertheless, as I said, it seems to me that what you have described is medication/central auditory/dyslexia-related. In other words, I suspect that there is more than one thing happening; therefore, solutions will likely be multiple.

    I don’t know a single thing about your therapist. You wrote, “Right now, my therapist is just saying that adults do not regress…”

    YOU are the adult about whom your therapist was referring. YOU tell me – is your therapist right or wrong? YOU are an adult. Are YOU regressing?

    No, adults cannot regress in terms of actual chronological age. That is so obvious as to be stupid to even have to express. But I cannot think of a single other way that “adults do not regress” or at least certainly have the potential to regress.

    Autism entirely aside for a moment, has your therapist never encountered an elderly person? Have they never known an 80 year-old who could still safely cook at 75, but not safely do so at 80? Is that “progression”? No, it is regression.

    Your therapist’s lack of simple logic is appalling.

    Add autism to the mix of “regression” to which even the most “normal” people are vulnerable, and it’s a whole different scenario yet again. Does your therapist even know what autism is? Maybe he or she knows some definition from a book, but the book is not their client – YOU are. Why don’t you ask him or her to tell you what YOUR experience of autism is, and then you ascertain whether or not they know anything real and true, anything at all, about YOU and how autism affects YOU.

    “Therapy” is not requisite for dealing with autism. YOU will need to decide if this person even knows what they are talking about. You will need to decide what, if anything, “therapy” does to help you.

    My verdict is NO – your therapist does NOT know what he or she is talking about. Adults with autism DO regress. I know because I have autism. Does your therapist?

    If your therapist is so idiotically uninformed about autism (and based on the “adults don’t regress” comment, he or she is), then I would say that your therapist has stepped out of his or her circle of professional competency. They have a professional and ethical duty to refer you elsewhere for more informed treatment.

    If your therapist was mine, I would fire him or her.

    When you do not understand things, why do you not ask for clarification?

  8. Lydia, you’re not alone. Enough autistic adults seem to regress for autistics.org to write a “Help! I seem to be getting more autistic!” article: http://is.gd/kpLFk6 (it’s long, and some of it isn’t relevant to you – but some might be).

    Yes, I think you should see a doctor if you haven’t recently. Some medical problems can cause regression or sensory problems.

    Epilepsy *badly* affected my communication, thinking and memory. I’m having far less seizures now than I used to, and my speech and language are far more reliable! (Worth saying: most of my seizures don’t look like what most people think seizures look like, and I was having them for years before I was diagnosed)

    I hope you find an answer.

  9. Cindy: Shorten your responses and I bet she would “get” it better. I am neurotypical with a pretty high IQ, and I got lost about the 2nd paragraph. Just a friendly thought.

  10. Thanks for the ‘friendly thought,’ Stephanie P.

    It would be helpful – and more friendly – if you specified at which “2nd paragraph” you “got lost,” and what you mean by “lost.” Was I incoherent? Did you not understand my vocabulary? Was my reasoning illogical? What?

    Lengthen your responses and I might “get” it better. Just a friendly thought.

    In the meantime, Lydia, don’t worry about it and get well soon.

    Is that better?

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