Is there anyone on this board who is non-verbal?

[Keigan]

that would be an assumption that you have found a way to communicate with the assistance of a computer? Or other means.

If so, please respond.

How did you start to communicate using a computer? Or other means? How was your voice discovered?

 

[Keigan]

When my baby dog arrived at 16 weeks, I remember laying down on the floor with him in the middle of the night and saying "talk to me, I can't understand what you need". A moment later I realized he would never talk to me using my language, so I decided to study him in order to discover his language.

As time went on, I discovered that his language was through his feet and how he turned his head - for he never even barked.

Two years later I knew how to recognize his basic needs very well, and he knew my spoken and movement based language also.

Then one day he barked, and barked, and barked - an entire new message though not a language. His bark turned out to be a gift, he was telling me that something was terribly wrong with someone else - it turns out that he can use his nose to early detect for cancer in humans, his bark is his message that if you don't already know then you better see a doctor. So far hos nose is 100% accurate.

So keep trying, I share this story for you never know what you might find, if you keep trying.

 

[Warmheart]

Just giving a friendly shout-out to @toothless in case she finds time to stop by. She's usually pretty generous with helpful explainations about this topic.

I'm mainly verbal, but do lose speech under stress. I use an AAC when I have no speech. I find when I lose speech, people talk baby-talk to me, or only speak *about me* to whoever might be with me. It's as if they no longer perceive my personhood. Or, they assume I can't hear, or can't think.

When meeting those who don't speak, always remember:
Presume competence!

A good film on Youtube is "Wretches & Jabberers," about a group of nonverbal adults who travel internationally with their autism support staff, using AAC or FC to teach at autism conferences. Today, these nonverbal Autistics remain very active advocates, educators, powerful agents for change. Remember the book "The Reason I Jump"? The author, Naoki Higashida, is a member of this group. (Mr. Higashida's recently released a new book, too, called "Fall Down Seven Times, Get Up Eight.")

Check out Amy Sequenzia's blog, nonspeakingautisticspeaking. (Something to a Google )
She also writes for Ollibean. She's a very outspoken person who is also a strong voice and leader for change. She uses AAC, I think, to communicate. Me. Sequenzia also is a featured speaker at Autism conferences.

I hope you get some good responses from nonverbal members.

 

[Plant13]

that would be an assumption that you have found a way to communicate with the assistance of a computer? Or other means.

If so, please respond.

How did you start to communicate using a computer? Or other means? How was your voice discovered?

I have non verbal episodes. In order to answer a question out loud, so many thoughts at once I can't sort them out in time. Yet the words must come out, so yes, to the computer where the words fly out of me. So frustrating. With medication it's much easier I will say that, and I will prepare for communication with medication.

 

[Mia]

So keep trying, I share this story for you never know what you might find, if you keep trying.

I agree, I have a cat named Greg. He sniffs infections, lays down beside you and purrs. He's very specific, when I had a sinus infection he continually sniffed my nose, only in that place. For some time he did that until the infection was gone. Then he stopped sniffing that area, and now sleeps beside me at night.

 

[Dadwith2Autisticsons]

that would be an assumption that you have found a way to communicate with the assistance of a computer? Or other means.

If so, please respond.

How did you start to communicate using a computer? Or other means? How was your voice discovered?

Our one 5 year old son is nonverbal, but often the best ways for him to tell us what he wants is to have him pull us to what he wants, or if he gets what he wants by himself. Regarding the former, once he pulls us to that object we know from his routines what he is asking for. For instance, if he pulls us near the freezer and looks up towards it, we know he wants to be lifted up, and for us to open the freezer door for him to cool down with the cold air blowing out onto him.

Before we lift him up and open the freezer door we usually ask him "go up?" We repeat this a few times, as we know he has the capacity to say, "uh" for up. That is one of the very few sounds he makes, other than some letters of the alphabet. Or like if he goes to get his red baseball cap to put it on, that tells us Dylan wants me to push him outside around our road loop where our home is just off of. He associates his hat with going out and taking a ride in his large stroller.

 

[Suzanne]

I become non vebal when I am agitated or nervous and often resort to texting or emails, as my words flow from my brain to my hands with fluency. It has been noted by some who know me and I made the mistake of talking with them online, that I am a totally different person and so, I no longer do that, because I cannot cope with the two different sides of me.

It is interesting you say that regarding your pet. In truth, I am not an animal lover ( could be related to my past actually), but I do believe that when one comes to own something, one should understand as much as they can about the object. Because, objects speak their own type of language and to learn that language is to work effectivily and also for it to give its best to one.

 

[Plant13]

exactly, and a question to me, any interest in me from another, is a surprise and I shut down. I'm not two different people, I'm a freed person when my fingers do the talking. I type as fast as I can think, which is a blessing. Pets. Well, how can I survive without someone to care for and share my kindnesses with? That, to me, is the worst part of isolation. That I have cared for a child and that I never will again, and it was the best person I can be. So pets I must have.

 

[Plant13]

exactly, and a question to me, any interest in me from another, is a surprise and I shut down. I'm not two different people, I'm a freed person when my fingers do the talking. I type as fast as I can think, which is a blessing. Pets. Well, how can I survive without someone to care for and share my kindnesses with? That, to me, is the worst part of isolation. That I have cared for a child and that I never will again, and it was the best person I can be. So pets I must have.

When my baby dog arrived at 16 weeks, I remember laying down on the floor with him in the middle of the night and saying "talk to me, I can't understand what you need". A moment later I realized he would never talk to me using my language, so I decided to study him in order to discover his language.

As time went on, I discovered that his language was through his feet and how he turned his head - for he never even barked.

Two years later I knew how to recognize his basic needs very well, and he knew my spoken and movement based language also.

Then one day he barked, and barked, and barked - an entire new message though not a language. His bark turned out to be a gift, he was telling me that something was terribly wrong with someone else - it turns out that he can use his nose to early detect for cancer in humans, his bark is his message that if you don't already know then you better see a doctor. So far hos nose is 100% accurate.

So keep trying, I share this story for you never know what you might find, if you keep trying.

My Charles Laughton smelled illness, his big cranium would quiver, that crease in his head-what a great dog. You are so fortunate.

 

[Plant13]

exactly, and a question to me, any interest in me from another, is a surprise and I shut down. I'm not two different people, I'm a freed person when my fingers do the talking. I type as fast as I can think, which is a blessing. Pets. Well, how can I survive without someone to care for and share my kindnesses with? That, to me, is the worst part of isolation. That I have cared for a child and that I never will again, and it was the best person I can be. So pets I must have.

When my baby dog arrived at 16 weeks, I remember laying down on the floor with him in the middle of the night and saying "talk to me, I can't understand what you need". A moment later I realized he would never talk to me using my language, so I decided to study him in order to discover his language.

As time went on, I discovered that his language was through his feet and how he turned his head - for he never even barked.

Two years later I knew how to recognize his basic needs very well, and he knew my spoken and movement based language also.

Then one day he barked, and barked, and barked - an entire new message though not a language. His bark turned out to be a gift, he was telling me that something was terribly wrong with someone else - it turns out that he can use his nose to early detect for cancer in humans, his bark is his message that if you don't already know then you better see a doctor. So far hos nose is 100% accurate.

So keep trying, I share this story for you never know what you might find, if you keep trying.

My Charles Laughton smelled illness, his big cranium would quiver, that crease in his head-what a great dog. You are so fortunate.

 

[Kirsty]

A good film on Youtube is "Wretches & Jabberers," about a group of nonverbal adults who travel internationally with their autism support staff, using AAC or FC to teach at autism conferences.

I will watch this. It sounds very interesting.

I find when I lose speech, people talk baby-talk to me, or only speak *about me* to whoever might be with me. It's as if they no longer perceive my personhood. Or, they assume I can't hear, or can't think.

I know, sadly this is what happens quite a lot in the NT world. We NDs have slower processing, but can hear and/or understand everything. If someone was deaf, they can see if they're included in conversation or not. If they are blind, they can hear. If they are deaf and blind, we try to accommodate them so they can understand. Even if someone is on their death bead, we must respect humans at all times and treat others equally, by talking to the deceased, making sure they feel safe and comfortable while giving them their last wash and dressing.

 

[Gracey]

Thanks for starting this thread.
I gesture when I haven't got the words to answer a question. Point to something or nod or shake my head to mean no when with immediate family at home. (little or no escape)

When I feel too tired or confused to do that, I isolate myself and just be with my dog. His language and the way he just is, being far easier to cope with than the demands of all else. He never insists I communicate with him, it just happens so freely and I don't have to utter a syllable or form a sentence.

He exists in this moment and reads my body language. He fits in with me. I don't have to be anything other than myself. It doesn't matter what I look like or whether or not I've slept or washed. In the ten years we've lived under the same roof, I would go as far as saying he's been my own heartbeat.

I'm 48, thirty years of marriage, three grown up, independent children. Hidden, adapted and mimic my way through life thus far.
I've always had cats and dogs, even growing up and as far back as I can remember. Aspergers was never a consideration. Being with animals has always been easier than being with humans. I've always done it, even before I started trying to understand why. It just was.

 

[Mr Allen]

I didn't speak till I was about 3 years old as I recall, and even then I had to have speech therapy in the early 80's because I had a lisp, couldn't pronounce my s's.

 

[Ezra]

I have always been nonverbal. Up until I was 8 I was diagnosed level 3 severe autism. At 8 I started being more responsive to others and began using single syllable words at times. I have had a lot of speech therapy and can talk some if I absolutely have to but it is very difficult for me. Mostly I communicate in real life by making simple gestures and using my phone to text.

When it comes to using a computer, I started reading discussion forums and then decided to join in and it came very naturally to me. I was also nudged into doing so by my occupational therapist.

 

[Keigan]

I have always been nonverbal. Up until I was 8 I was diagnosed level 3 severe autism. At 8 I started being more responsive to others and began using single syllable words at times. I have had a lot of speech therapy and can talk some if I absolutely have to but it is very difficult for me. Mostly I communicate in real life by making simple gestures and using my phone to text.

When it comes to using a computer, I started reading discussion forums and then decided to join in and it came very naturally to me. I was also nudged into doing so by my occupational therapist.

Please tell us more about your experiences.

So discussion forums drew you into the conversation as way to express yourself?

 

[Ezra]

Well in real life I life I live a pretty sheltered life between being at home and going to a private school for autism, so communication isn't much of an issue since they all know how to work with me. I pretty much stay quiet and keep to myself at home and school and just follow routines.

After I turned 13 I registered on a few discussion forums including this one. I felt pretty nervous about posting anything on them at first. But then gradually got into it and found out that I had a knack for it and started interacting more and more with others, unlike in real life. I have been well known and liked on different forums. I completely forgot about this one though until it got mentioned on a forum I post to the most these days. I know of other nonverbal unsocial autistic people who have had a similar breakthrough. So yeah I express myself quite a bit on forums as opposed to real life.

 

[BenH1972]

I'm selectively non verbal.
It came as just as much a surprise to me as it did to others, & of course some choose to believe I'm just rude or ignorant.

I vividly recall an early incident as a child, where I went with family to a fairly crap theme park that no longer exists: "Old Sydney Town", where bad actors would wander around & it was like being in Sydney in the 1800's. I was sent to get a horse shoe as a memento, & when asked my name to have it put on the horse shoe, I panicked & ran away from the blacksmith store.

I'm now 45 years old, & am still selectively non verbal.
Usually I don't talk to strangers, don't start conversations, & avoid the phone wherever possible.

Ironically, for a time I worked in a call centre, in the hope that it might alleviate my despair at verbal communication, but I couldn't keep it up too long, it just wore me out.

I now don't work, spend most of my time with my dog, & only talk to a few select people, other than if I go to the library, or have to buy something; & obviously even then it's out of necessity not desire.

Essentially I only talk if its' the most practical appropriate method of communication with someone I have no choice but to interact with, or if it's one of the few people I want to talk to.

Thankfully, as Harry is usually with me most of the time when I go out, he takes the attention away, & I'm happy enough to talk when he's present, so long as it doesn't go too long.

On the other hand, with familiar people, or if I'm engaged in a conversation about my hobbies or interests I can carry on a conversation with not too much trouble, apart from the Aspie thing of not knowing when to stop for a breath, or let the other person talk.

I'd like to say the non verbal thing improves with age, but I think for some it just doesn't for some it maybe does with practice, & for some like me, I can't see the point in wasting my voice just so others can see I can make sounds out of my mouth.

Anyone who expects me to talk just because I see them doesn't understand me, & if they don't understand me it's usually because I don't want them to.

I have some neighbours in my unit complex that almost make a game out of trying to make me talk.
People like that just make me angry, so the reason I don't talk to them isn't because I can't, it's because when I get angry I have two choices, go non verbal, or scream abuse.
The former causes less problems, but the latter will happen if provoked.

I have also been known to go non verbal when stressed, but not sure if that is ASD, PTSD or something else.
Either way, at my age I have neither the need nor desire to resolve it at this point.

 

[Molly]

hi @Keigan I love the story of your dog, thanks for sharing that. It's very uplifting.

I become non-verbal several times a day where I'll shut off; this happens when I am overstimulated, tired or agitated/upset. Also, my method of communication has always been email; I refuse to use any type of instant messaging, I never speak to friends and relatives via the telephone (in fact I turn my phone off much to the annoyance of my relatives, I am the only member of my family who isn't permanently attached to my mobile phone).

Oh and I run for the hills screaming if anyone should mention Video-calling me.....

 

[artfull dodger]

I am very much like BenH above, selective non verbal. Depends on the situtation and like him, if the topic is about my hobbies or special interests, I have trouble shutting up about it. Put me in an uncomfortable situation, like a crowded bar, I will be almost totaly non verbal. So I avoid those places and for more reasons besides the non verbal part.

 

[isthisreallife]

I become non-verbal in intensely stressful situations, or if I'm incredibly tired. If I'm tired I'll mostly just point or gesture. If it's stress related I'm not able to communicate by any means. It's 100 times easier for me to express my thoughts in writing (text, e-mail, forum etc) than it is to verbally. My verbal communication is..... interesting sometimes. Long pauses, incomplete sentences, repetition, mispronunciation, and using a made up language (sounds a lot like babble).