Mutism

Many autistics are nonverbal, although you don’t have to be nonverbal to be autistic.

Some of the nonverbal autistics who never gain speech may have some form of developmental apraxia and lack enough muscle control to use their vocal chords. These individuals may really want to communicate but are unable to. Many cannot even focus their muscles enough to type or write either.

But with Augmentative and alternative communication or with sustained and correctly executed Facilitated Communication, these autistics may be helped to communicate. FC has gotten much criticism – some of which may or may not be justified – but I have personally seen it work for Mrs Hilke Osika, music therapist, autism expert and mother of 3 autistic sons. She is successfully using it with her sons here in Sweden, as well as teaching it to others. Many of nonverbal children mysteriously learn to read and spell on their own. Mrs Osika (originally from Austria) reports an instance when she repeatedly spelled a word one way and her son kept spelling it another way when pointing on the FC letter-board. When she later consulted her dictionary, it turned out that her son’s spelling was the correct one…

However, for it to work, it must be done with someone the child knows and trusts, and the Facilitator needs to have the proper training to be able do it the right way (which is supporting and holding against the Communicator’s wrist so as to provide a stable base, not guiding their hand to individual letters on the letter board or keyboard).

Other autistics started out with FC but later learned to type on their own and continued writing in the same personal style; some proving to have very deep and profound interests and thoughts. Lucy Blackman is just one example.

Ergo: difficulties speaking does not necessarily mean that the person cannot think or feel or understand. Many nonverbal autistics have baffled everyone when gaining access to a computer. For example the girl in this short film: Autistic girl expresses profound intelligence

Another autistic was locked in a mental hospital for years, considered a hopeless case and the most dangerous woman in Sweden. After a female Swedish scientist took a personal interest in her, it turned out that all she needed was some mental stimulation, a computer and being treated like a human being. Read more here: Free Freya

“My sister’s husband has an adopted sister who was diagnosed as severely retarded when she was young, but after she was adopted her new mother decided that wasn’t accurate and fought to have her appropriately tested and when the ‘powers that be’ finally listened they found that she had problems with speech due to congenital problems with her mouth, muscles in the mouth, and vocal cords but that she was not retarded. After that, she was able to get her driving permit, then license and now she is an adult, married and has a child.”

Kathy J, Aspie from USA

So, don’t assume someone is unintelligent just because they cannot speak, control their own body or regulate their emotions. (Rather, I’d suggest assuming normal intelligence, with the possibility of high, until the opposite is proven beyond all doubt.)

One of the most brilliant minds on the planet has at times been treated like a mentally disabled person when ALS affected his ability to speak properly, although it was only his muscles malfunctioning, not his mind:

“One’s voice is very important. If you have a slurred voice, people are likely to treat you as mentally deficient: Does he take sugar?”

Stephen Hawking, physicist

SELECTIVE MUTISM

Many on the autistic spectrum are basically verbal but may nevertheless find it difficult to speak at times, so-called selective mutism. It is not done on purpose to annoy others, but usually have perfectly valid reasons.

Straining. Some find it physically straining or painful, or simply don’t like to talk.

“I don’t particularly like talking – verbally I mean – but I love writing. I often prefer messenger over a verbal conversation. I will and do have verbal conversations when I am in the mood – but sometimes it is just so painful – I seem to sometimes have difficulty verbalising things – getting the right words and my tone of voice is not correct either and can lead to misunderstandings.”

Julie, Aspie from England

“Yes, it is quite bothersome to talk when I don’t want to. I prefer to keep quiet and speak only when I have something important to say.”

Heather, adult Aspie

Often I am too sensitive to use my voice. If I force myself to talk when my body tells me not to, it causes me severe pain, disruption and/or fatigue that may take a long time to recover from. And even on those days when I am fully able to talk, I will invariably need to rest my voice for at least a few days afterwards and need extra sleep to recover from the strain. Crying can also increase sensitivity to abnormal degrees so when I was depressed and cried a lot, I turned 100% non-verbal for years on end. That was really annoying since I sometimes wanted to be able to talk.

Ing, site-author

“Many times I just don’t want to talk and don’t. Then again there are other times when I would like to have someone to chat with. There are plenty of times, however, when there is literally a lump in my throat when I try to speak. Not a nervous lump but rather a kind of blockage as if something does not want to let the words out. Most people that know me don’t get upset with just a nod of the head or a wave when I see them.”

William, Aspie from USA

“I sometimes have problems with actually getting a sound from my throat and talking loud enough.”

O.J., Aspie from Norway

“I have also noticed that if I use my voice very little during longer periods, it becomes harder for me to talk, if I use my voice as much as possible during a period, my ability to talk increases. When I went to school and had to talk almost every day it wasn’t this bad. Those days I have difficulties talking, I often talk to low and have to repeat myself several times, the words sometimes come in out in the wrong order, I can start stuttering or find it hard to just pronounce the words.”

Tobias, Aspie from Sweden

Stress. Some may find communication with strangers mentally confusing or emotionally stressful and talk only with people they know and feel safe with.

“At the end of school last year (year 11) i found it hard to talk at school or even outside of school. i stopped talking completely for about 3 months. I was finding it hard to try and figure out everything that was going on. for me, people trying to make me talk just made me angery.

“I found it easier to talk when i knew that the person who i was talking to i could trust. i didn’t like talking when there was a chance they could misunderstand and hate me. i would start talking and then worry about what if i had said somthing different before, which meant somthing different to them, but the same to me. what if i had said somthing which had changed. what if somone had told them somthing about me. that by talking i would confirm.

“If i could trust the person i would talk to them. and i was happy to talk over IM on the compueter and by e-mail. I prefer this because i do not need to think about where evrything soundy goes in the words.”

– Jamie, adolescent autistic

“The more stressed I get, the less I like to talk. After a certain point, I have to MAKE myself talk, and after the final threshold has been reached, I CANNOT talk. I can open my mouth, but my throat constricts.”

Tom, Aspie from USA

Right brain dominance. According to Carla Hannaford, it is normal for a person with right brain hemisphere dominance to lose verbal ability under stress – especially if they also have a right hand, eye and/or ear dominance. Men – and females with a male brain type – may find it extra difficult/impossible to communicate due to having less contact between hemispheres.

I usually have access to both hemispheres when calm and focused, but when stressed, ill, excited, upset, inspired or when listening to music or working with colour, I notice myself becoming temporarily extreme-right-brained and introvert and sometimes find it hard to even think in words. Although frustrating to not be able to communicate right then, the increased sensitivity often gives me peak experiences and inspiration that may be of much use when I am able to resume communication again. During the 4-5 years when I was totally non-verbal, I got my best ideas and was more creative than ever! Other creative people I know have also reported becoming non-verbal during creative spells.

Ing, site-author

To force or pressure someone to speak when they clearly indicate that they are unable or unwilling, is nothing less than abuse! If and when the person is able to speak without pain, strain, confusion or fear, s/he will do so voluntarily. Mutism and Selective Mutism are disabilities and should be respected as such. Using sign language, flash cards, computers or pointing boards (whichever is most appropriate in each individual case) is then more helpful than trying to force the autistic to speak before they feel ready and able to.

“The more people tried to make me speek the harder i found it to speek.

“What alot of people don’t see is that when i was finding it hard to talk it was as much as that i didnt want to that when i did want to i couldent get it right. this made me angery at me. and when people kept saying to talk i felt bad because when i tried i would get it wrong by my way of it and they would not say anything else.

“For me, the people who helped most were the people who accepted it, and were happy to understand that at that time i was happier with the signs. the signs to me were alot clearer. people would somtime say to me that i was being rude when i answerd a question because i said yes. they always said it was the way i said it. in BSL yes means yes. and no means no. avoiding this need to figure out how i was meant to make the sounds of it made me more happy to answer.”

Jamie, adolescent autistic

LINKS

Selective mutism Wikipedia

Facilitated Communication Institute
National Geographic article about FC by Lorna Wing

Escaping The Glass Bubble Through Facilitated Communication

Interacting with non-traditional communicators by Joel Smith

5 Comments »

  1. Catinca said,

    When I started reading about AS, it was like someone was writing about me and explaining how I am, and why I am like that. I was relieved that the weirdness which others saw in me and which I had learned to see in myself was not some form of insanity.

    As an adult, I talk too much and on topics which don’t interest others so much. As a child, I barely said anything and I would have many moments when I wouldn’t speak. I have had several episodes when I completely stopped moving for hours too, caused by deep depressive states.

    The difference between my childhood behaviour and my adult one is that I learned how to handle my depression, and how to accept myself as I am. It happened gradually while I overcame my childhood trauma.

    When I happened upon the Wikipedia page about Selective mutism, I read that it is not the same as AS. I started to doubt my AS, because I was almost exactly like the child they described, but it didn’t progress, but regress. However, when I read the differences between Selective Mutism and AS, all it says:

    “hand flapping, repetitive behaviors, social isolation even among family members (not always answering to name, for example)”

    I never did any hand flapping, I am a poor judge of what a repetitive behavior is, but I was rather isolated, but I don’t think I wouldn’t answer to my name (if I was inattentively deaf, how can I know if anyone called?) and it’s not like a child with SM sounded too gregarious him/herself. If I hadn’t found such a strong connection with AS, I may have thought this was my diagnosis. I felt like I didn’t know what was wrong with me once again, but the loss of that feeling of relief made me think about it further.

    I strongly believe that SM is a variety of AS, possibly when an aspie child suffers trauma as well. I felt that I was wrong because my mother didn’t understand me and would scream at me all day long every day. To feel unwanted by your mother makes even the most distracted aspie become sensitive, emotional, and much more desiring to please. Only I know how deep my aspie traits are, because only I know how I learned to appear normal (and still fail at it a fair bit). It made my later diagnosis be questioned by others and I struggled to be believed that I had this syndrome, while the people who did not believe me continued to accuse me of the very same faults as the negative aspie traits. Thinking SM as a distinct disorder is potentially harmful to an aspie, precisely because of the trauma that made him develop with an aim to conceal the AS. They make it hard for others to see it in me, and SM made me doubt it myself. SM accounts for nothing of my adult behaviour though, which was my key to knowing what my condition is.

    I’d suggest that either SM is recognized as the effects of trauma on an aspie, or that some substantial differences between the two are found. The tics and routines are solutions to situations of anxiety, but so is mutism. If an aspie child opts consistently for the mutism solution, it will only cause difficulties in diagnosing and further misunderstanding of the quiet aspie.

    • Your moms said,

      To the above commenter, do not speak for me. I am an adult who has suffered from selective mutism all my life, and know for certain that I don’t have aspergers. If you would like to see people with the most faulty, judgmental, views on neurology and mental illness, visit an aspie site which was written for you and by you.

      • catinca@gmail.com said,

        I am sorry I offended you. I am not judgmental and I don’t think I’m always right. It was just my opinion and it seems I was wrong.

      • catinca@gmail.com said,

        You don’t need to say something about all aspie forums simply because you didn’t like my comment. There’s no need for this generalization.

  2. flagwag said,

    Non-avoidable social functions stress me to the point that I feel drained for days afterwards. This is because I have this sense of “having said too much” and the only cure to that is to just not say anything at all for a long while.


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