Why is there so little on low-verbal autism?

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I've been posting this around the place here, so have been doing some more research about tailoring things to be as nonverbal as I can. I can relate a lot with being nonverbal, especially with the few-and-far-between nonverbal autistics out there in the public sphere such as Carly Fleischmann, and the whole issue of speech just seems to be worsening recently. Physical verbal speech is just extremely difficult and unpleasant for me. I was nonverbal when I was a child, but relatives and schools and so on always bullied me into speech, making it clear that not responding verbally was not acceptable.
But when I try to research speech and autism, all I get is the usual - ways for neurotypical parents to teach their "low functioning" nonverbal children to speak. Being nonverbal or low-verbal seems to be associated with severe intellectual disability. As evidenced by Carly, that isn't always the case.
Nothing about nonverbal adults living lives, nothing about what is behind being nonverbal for actual autistic people, the different ways this manifests and is experienced, and especially it seems, nothing about low-verbal autism. People who can speak, but it's just awful to do so. All I get in searches is brief clinical notes about the categorizations of autism (which I don't like anyway) and who "qualifies" for what based on set criteria. That really tells one nothing about low-verbal autism.
I'm currently corresponding with a deaf activist who teaches sign language, about how deaf people who are also nonverbal or choose to exclusively not use speech are able to navigate the world. The deaf community may be an insightful resource on this, but ultimately, their reasons for being nonverbal are different t that of an autistic person. And I can't find anything about this from an autistic perspective.
Anyone else nonverbal or low-verbal (and I can think of one person on WP who is) have info? Insight? Directions to point me in?

Fall Down 7 Times Get Up 8: A Young Man's Voice from the Silence of Autism Kindle Edition

by Naoki Higashida (Author), KA Yoshida (Translator), David Mitchell (Translator)

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Well, "associated with" doesn't imply that something is always the case so I don't see why you care about evidence disproving something that no one claimed as true.

It stands to reason that people who talk little or not at all don't get their stories reported; how can people write about them if they aren't told what to write? There probably is a correlation between being non-verbal and being intellectually disabled, so most of these people probably aren't writing their own stories either.

Last edited by starkid on 26 Jun 2017, 11:18 pm, edited 1 time in total.

I am struggling with this type of problem in this and a few other ways:
• Ability but difficulty with hearing;
• Ability but difficulty with listening;
• Ability but difficulty with seeing;
• Ability but difficulty with reading;
• Ability but difficulty with speaking*;
• Ability but difficulty with touching**;
• Ability but difficulty with walking***.

For most of these, I can do them but, because of the difficulty, if I continue to do them, then I am going to melt down - which is not fun for anyone - or I am going to shut down, and then I cannot do them. ***For walking, because of an unexplained weakness, I will collapse.

• When I start having difficulty with hearing any more noise, I put in my earplugs, and depend on my Service Dog to keep me aware of important noises around me.

• When I start having difficulty with listening and following speech, I may put in earplugs (if needed), but I definitely utilize a sign language interpreter.

• When I start having difficulty depending on my poor eyesight, I put on my sunglasses, take off any prescription (sun)glasses, or turn off the light, and depend on my cane, my Service Dog's guide work, or the fact that I am prodigiously organized at home (everything always in its place).

• When I start having difficulty with reading any more print, I will close my eyes, and take advantage of my special interest and proficiency in Braille or use my phone's accessibility features for the blind.

• *When I start having difficulty with speaking any more today, I will just stop talking, and take advantage of my knowledge of American Sign Language, use my phone's text-to-speech application for the nonverbal, or my homemade keyring cards.

• **I do not have any workarounds for dealing with touch.

• When I start having difficulty with walking (weakness and fatigue), I will use my cane (walking stick not guide cane), or available business-provided wheelchairs.

All of my difficulties are not as total as their more well-known fully-sympathized counterparts (deafness, blindness, mutism, paralysis), so I always feel guilty utilizing any of these tools.

Sorry for monologuing at you. The relevant parts are in bold and the summary is: I too have noticed that using the same tools for "milder" versions of varying disabilities (e.g. computer text-to-speech apps for people who can but do not wish to speak) does not really get discussed.

This may not be implied, but this is inferred by many people who are too lazy or too uninterested to put much thought into it.

What? That's expressed in a bit of a convoluted way. I didn't write that it is always the case. What I meant was the only information I could find on nonverbal or low-verbal autism was from a clinical perspective, and in reference to severely intellectually disabled people. Which isn't very helpful. In the literature, it's as if intellectually capable adults cannot be nonverbal or low-verbal.

"A correlation" is the same sort of expression as "associated with," which you refuted. That noted though, nonverbal and low-verbal people who are cognitively capable - as in the example I noted - are getting some info out there, which is what I am interested in.

While I can not claim to fully understand what it is like to be totally nonverbal I do have times where under stress I verbally shut down. I also from time to time experience language processing difficulty where some one could be speaking plain american english, I am an american, & I can't understand a single word they said for short periods of time, not even after having them repeat multiple times. Sometimes it will come to me what they said minutes later after the conversation is already over & they or I have left the situation, many times not, the conversation remains a mystery to me. This has happened many times.

For me my nonverbal periods seem to be stress related as well. I cannot speak if it doesn't sound right in my head as I'm trying to get my thoughts together. I also have this kind of nonverbal episode when being pressed to answer for some action I did whether right or wrong I end up going silent as if a lamb being led to the slaughter even if there was nothing I did wrong & there is a perfect explanation even though I can't put it together at the time of questioning.

I'm nonverbal. I can say what is usually a one syllable word here and there and that's rare. But I have never spoken a complete sentence. You can't have any kind of a normal verbal conversation with me. And I have known of others in school like me. And also some nonverbal non-autistics who have severe selective mutism for instance. I've had lots of speech therapy, but it hasn't gotten me to talk. Thankfully I live in a time where texting is so common. And I can say a lot just making gestures.

This is why I advocate for the "goodness" of the Internet. It has enabled nonverbal people to communicate to many all around the world, and to "show their stuff."

I had no speech till age 5; now, people can't get me to shut up

Yar. So, since you have the physical capacity to speak too, what is it about verbal communication that is difficult for you? How is this experienced for you? You are obviously not intellectually impaired. I have a form of vocal dysphonia which makes speaking difficult and sometimes painful, even sometimes impossible physically, but it's more the psychological aspect that gets me. Sometimes during periods of heavy vocal speech, or in situations where I know I will be required to speak, it's like I'm on drugs. I can't think, can't focus, my mind is blurred out and distorted, everything gets confused and disjointed and just repeats over and over. When this pressure is off me or I haven't been made to speak in a while, everything seems clear. Things I couldn't work out before suddenly seem obvious, and I can think again. What actually happens with you?
It seems like I can't find any info on this, about what goes on for me with speech, and I have no idea if other autistic people are in the same or similar situations.
Oh and PS : I asked the question of the deaf activist I contacted about the problems autistics may experience with sign, and they seem strangely similar to the difficulties with verbal communication - I mentioned that I cannot make eye contact, and will probably have less-than-expressive modes of signing. They mentioned that this may be just as difficult for a deaf person interpreting me signing as it seems to be for a hearing person trying to work out what I'm saying when I speak.

Around where I live, if you have the ability to speak, and don't use it, it's considered selective mutism. That is if autism is not on the table.

People can be really harsh, when they find out you have the ability to speak, but for whatever reason are unable to (they view it as won't). My friend's daughter has a learning disability and severe selective mutism. Elementary and middle school really gave her s**t about the text to speech tech. High school washed their hands, and dumped her into SPED. Basically, f**k her.

It took her a long time with a therapist and speech therapist to talk outside her home. She did it, but really longs just to use her text pad.

You might look up speech and cerebral palsy. Many of them can not talk, but have no mental functioning issues. Lots of adaptive tech there.

Signing....

It is all facial expression and looking at the person for gestures.

I had a little boy at school who they were trying to teach to sign. He could sign some things he wanted. Yes, no, out... He could not follow what the teacher wanted when she signed. He wouldn't look up at look at her. So in the end, it was easier to use the iPad.

The boy couldn't do the "follow up questions." He'd sign "thirsty", and the teacher would sign "water or juice". He couldn't even look at her to see the question.

In my experience, there were a couple of main causes whenever I shut down verbally. The best way to describe one of the issues is that it feels like translating my thoughts into words is like trying to speak a language I don't know. Having to mold my thoughts to fit into a conversation would change the meaning of what I originally wanted to say. This would normally cause me to shut down until I could determine a way to communicate my thoughts properly. The other issue is that often times I wouldn't have anything nice to say to someone that was speaking to me. I always felt that it was wrong to say anything mean to someone, whether it's intentional or just provoked. But clearly, it's more socially acceptable to be mean than it is to not say anything at all. In either case, my only experiences with being nonverbal were caused by a mental block, and not so much a physical inability to speak.

Well up until around the age of 10 they had me diagnosed as severely autistic which included intellectual disability based on my testing which began when was 2. But from 10 onward I started becoming more responsive. I had had a lot of therapy during that time. My verbal communication problems are mainly a neurological disability combination of autism and dyspraxia which tend to overlap each other. In speech therapy I can grind out words reading from a list with a lot of effort. But that's as far as I have gotten. Sometimes selective mutism comes into play where I can't even manage to do that. But that's the thing, talking for me just does not come naturally. Even though it's been determined that I don't have intellectual disability, I'm still way behind developmentally in many areas. Even though I am a good at writing, it often takes me a long time to put together posts like this for instance. And I have never been able to get very far with sign language either. Usually my version of signing is to pat my belly top indicate I'm hungry and stuff like that.

This is an interesting video. I think the brocas thing is something I have heard in my neurological evaluations.

I can look at people no problems - when people are speaking to me I am often actually looking at their hands and gestures intuitively, perhaps because they're moving the most, I don't know. Other people to me are a bit of a confusing combination of focusing on their hands, the movements of their bodies, the fabrics and colours and details of their clothes, the sounds of them, the light on them. I do not make eye contact, but that doesn't mean I can't look at people and pay attention. Which I thought would be good for sign, but apparently there is an expressiveness and eye contact aspect. I'm hoping that will just put me in the "little odd" category signing as it does everywhere else, rather than making communicating this way impossible. It's also possible that because I am so much more comfortable nonverbal, and signing always feels much more natural to me than speech, I may actually able to be more expressive with sign/nonverbal than I am verbal. Because as I noted, the awareness of and expectations around using verbal speech seems to trash my mind. Without that, there may well be more room to communicate effectively.