Loss of previously acquired speech

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I am curious about who here had some speech then lost it. When I was a baby, I had a few words, then I stopped speaking for a while. Apparently my mother had the same thing.

Well, I said my first word quite early (9 months) but everything after that moved extremely slowly and I couldn't speak sentences until I was about 5 1/2. So I experienced something similar, I didn't lose speech altogether but I didn't develop it at the speed my parents thought I would.

I had speech before I had language, and language before I had reciprocity. Apparently typical babies go the exact opposite way--first they learn to interact; then they learn that words mean things; then they learn to make up sentences... me, I learned to speak, then I learned that words meant things, then I learned to go back-and-forth with another person. But I spoke on time, so I'm Asperger's.

I had speech then lost it in infancy.

I regained it and then gradually lost it again starting in adolescence when my periods of inability to speak became more frequent. By age 13 I was sent to a neurologist and neuropsychologist in part because of the increased frequency of speech difficulty. By age 15 my psychiatrist (who had diagnosed me just before I turned 15) mentioned explicitly in an accommodation letter that I was periodically unable to speak. By age 19 I couldn't talk most of the day and by age 21ish I couldn't speak at all.

Loss of previously acquired skills in adolescence occurs in 1/6-1/3ish of autistics depending on the outcome study. Having features of a particular movement disorder (really just an aspect of autism that some people have steadily others don't have and others have progressively or intermittently) exist in 1/10ish of autistic people by adulthood in one study (I have the progressive form that is associated with speech loss even in some people dxed with Asperger's).

Right now I have some speech sounds but they are noncommunicative tics and echolalia so I am considered nonspeaking. (I am almost 30.) I type to communicate but cannot always do that either.

My speech development was very atypical in other ways besides the early speech loss. When speech came back I was echolalic and referred to myself by name and other things that besides speech loss/delay are technically supposed to differentiate AS from autism (I'm not big on the difference but I'm told for research definitions extremely atypical early speech patterns disqualify you for AS as much as delay/loss does).

In addition I had severe receptive language delays. I understood speech was required and could not only reproduce the sounds but through pattern matching was able to put them in many of the right contexts. And I learned all this before I knew words had meaning. (I also echoed nonword sounds.)

This affected my ability to use language to connect words to my thoughts. Meaning gradually seeped in over time. But even at my best only a small percentage of my communication (spoken or typed it made little difference because I couldn't understand the way to communicate) was actually from my thoughts. The rest of it was more like solving a puzzle: "Say X in response to Y based on what I have heard and read."

The way I put it in a poem (my poems were more communicative than any other communication I had, although many of them were just me putting interesting strings of words together) was:

I am reaching out to you
Through the walls of my body
But my arms are not my heart
In the end you must find me

In the center of my soul
Rests a fiercely glowing light
Through the darkness of my mind
Casts a glimpse of burning white

Round that star hang walls of glass
Colors through a prism swirled
Only shadows of that light
Live to reach the outside world

I know, really stereotypical, but this was just before diagnosis and I knew nothing of autism at all when I wrote it. And it turned out to be true too -- my ability to use words to find other people was limited and the people who helped me learn the most about communication were people who were on the inside and didn't need to find a way in because they were already there.

I may have learned and lost some things about communication many times but I was an adult before I finally got a lasting grip on communication as putting words to thoughts. I needed to see other autistics putting words to thoughts like mine. And then I had to wrest words away from the "Translator" (the thing in my head that spat out plausible but not-my-thoughts words in response to situations) and that was like trying to point a heavy rusty lever across a room at a small target. I often got the wrong words. I was never able to wrest speech away from the Translator for long and although it's gotten easier it's still an effort with typing. If I get tired or overloaded or lose focus my words come out plausible but unrelated to any thought.

It's just another way of thinking about things. It doesn't really matter to me very much, although if I could be without it I would feel better. It's very hard and I don't like it at all.. All I had to do in order to type that was loosen my grasp on words. Do that and things come out that have no connection or only a tangential connection to my thoughts or the situation. Wresting words away from a Translator is several orders of magnitude harder than just coming up with words when you have language trouble. Because it requires doing that but also wrestling the false words into submission so I can have access to the phrase bank without the phrases taking on a life of their own. Donna Williams once equated taming dysfunctional language with riding a wild bucking horse and I completely agree with her.

So for me my communication history is much more complex than simply having or not having words. Like Callista said having words before you understand what language is or what the words mean... it's backwards to most people and completely counterintuitive. And having severe enough receptive delays, those things reverberate through all the rest of your language issues in very complex ways. It took me years to be able to describe it.

Oh and at my best I still understand only 80% of the words I use and usually not while using them. And unlike many people with receptive delays I never permanently catch up. Every time I do language I have to start from a spot where I might as well not know language ever existed. It's like running to catch up with words every single time instead of riding in a car driven by someone else that exactly keeps up the pace of the words. Or like scaling a cliff to get to language but going all the way down to the bottom again, instead of setting up camp partway up the cliff or on top.

I know because people tell me that I am a good writer. But what people don't see is that cliff I scale every single time I write. Other writers just as good live at the top of the cliff. Some writers not as good live higher up than I do but don't climb as high as I do. But there is a huge difference between hanging by your fingernails at a certain elevation and standing firmly on steady ground on that elevation. I will probably always be hanging by my fingernails. This makes my language process massively different than most people who communicate on this level. Most of them live here. I'm just a visitor. And frankly 'd rather be a visitor than live up higher in wordland. Words are as much curse as they are blessing and being trapped in them sounds like hell to me even if most people who live there like it there.

And still I spend most of my time where language is just sounds and squiggles. Not an auditory processing problem but a fundamental language problem so that most of the time things still sound how they did when I was little. I don't know why I haven't lost it when many people do but I prefer it this way. I hope it never goes away.

I wasn't sure where to place my vote. I voted no, but I'm unsure if that was the right answer. I was language learning delayed, but I never experienced a complete loss of speach. At age 1, I was on track, but by age 2 I spoke a lot of jibberish, and by age 3 I spoke less than I did at age 2.

I was able to speak before the magic deadline that the experts have made up, but I didn't say much.

I lose verbal speech all the time. I don't know why. I can always, type though. I can only speak in echolalia or a few words, maybe one sentence, at a time. Nothing like I can type.

I don't remember all the details, but I have heard from my mother that a some point in my early childhood I started talking, but then stopped for almost a year before starting again. Pre-school started after this point, the teacher talked to my parents about my "speech impediment." The impediment actually was that I didn't talk to anyone, not the teacher, or any of the other children.

my late parents told me that i first spoke very early, very briefly, then stopped cold until i was nearly 4. at this point they took me to a shrink who tried to find out why i wasn't talking- after a while he lost patients and shouted at me, "TALK!" - according to my folks, i then shouted back, "NO!! !"

i saw a YouTube video recently from an aspie girl who at age two or so lost eye contact and speech with the introduction of dairy into her diet, then regained it when dairy was eliminated. i don't know if this is a common cause of early childhood regression, but it was certainly a factor in hers.

found the video:

[youtube]http://www.youtube.com/watch?v=VnYmchKitp8[/youtube]

If I remember reading this somewhere, this sounds like "Rett's Syndrome". It's like a digression, and is considered a pretty rare syndrome in even autistic children.

I don't know if this counts, but I have a hard time, when talking (and sometimes when even typing), pulling out the right word. I know the meaning, but I can't think of it/remember it and say it, and it especially happens when I'm talking, and within the past few years it seems to happen more often when I try to communicate with others when I am speaking to others. It's caused for some awkward times, because I'll be talking, and then I"ll draw off and try SO HARD to think of the word and what it was. Sometimes I eventually remember, and other times I don't, in time period I'm with that person. Then sometimes it'll be the next day, and the word will pop in my head, and then I'll feel so stupid and wonder why I couldn't have figured it out. I know it, I know I know it, but I didn't.