Speaking without vocalising.

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After hearing one too many times from a parent that they are amazed to think that autistic  individuals who are non verbal are of the same intelligence or even higher as someone who is verbal, I decided to take action.

I know two wonderful Autistic women both of whom use alternative means of communicating other then verbal speech, and they were more than happy to help me lift the myth on non verbal Autism and a lack of intelligence that seems rife in the neurotypical community.

I believe it’s important for non verbal autistics to show neurotypical people in particular parents of non verbal children that their child, although they do not verbally communicate have the same thoughts, values, interests and opinions as a verbal child.

It’s unusual to me that they would doubt it or think otherwise.

IMG_7114First I spoke with LaVonnya Gardener, an autistic mother to an autistic child who is also registered blind and has only 30% hearing in one ear. LaVonnya makes videos on YouTube demonstrating communication software and applications and uses a communication device. I asked LaVonnya what it was like for her growing up in a verbal world when she herself has great difficulty with articulating speech and would have found it hard to communicate her needs and feelings.

“ As a young child I knew that I was a girl. But I didn’t necessarily know that I was a child. I wasn’t told this. So, I never knew. But I did know that I was a student. I went to the school for the blind. We were called students. So I was a student girl. That’s who I was. That’s what I was.

I did not know that I was blind.

I did not know that I was deaf.

I knew that some students at the school were blind. I wasn’t given the reason for learning sign language or Braille. To me it was fun. So I did as I was told.

I knew that I thought differently than most of my classmates. The kids that I was in the dorm with,  none of them liked me. I knew they knew things that I did not know.. I knew that but I was there for 17 years.  There was only one kid who liked me. He’s now my fiancé. He was my constant at school. He was always around and always pulled me out of stuff. Often literally. Out of closets, boxes, especially boxes. Trashcans and out from under beds. Often I would get myself under these things are into these things because I wanted to see if I could fit. You see I didn’t know any better. When he wasn’t doing that he was pulling things out of my mouth. Sadly for him I’m still putting things in my mouth. Haven’t exactly worked out what should go in there and what shouldn’t.

I played with any and everything I could get my hands on. I would chew on whatever I could get my hands on. If the door happened to be open, I would run out. I didn’t even start questioning why these things happen until I turned about 16.

I started reading about why I did the things that I did.

And then I stood on a psychiatrist desk and demanded to know answers. Well I’m 6 feet tall. So of course they told me. I cleared the desk and demanded to know why I was the way I was.

They told me that I am autistic.

Well it matched everything that I had read in the book, so I believed in them. I have no idea what it meant. And I haven’t met anybody else who had told me that they were too. I will still quite confused and couldn’t study this until I became an adult. I couldn’t deal with computers back then, and we didn’t have iPads back then. As far as my vision hearing, I thought that everybody could only hear out of one ear. . So I didn’t even question those. Maybe I should have. They were calling me stubborn in school because I wouldn’t comply with what they wanted me to do.

Oh, and the communication devices that they had back then really sucked. I definitely preferred sign language then. I still do today, but the technology has improved so much that  I really don’t mind so much using my iPad. It’s just the technology can die on you, where as your hands don’t. I tell people all the time that I can walk and sign, but I can’t walk and type. And I definitely can’t walk and find a picture.

I was never told about graduation so I didn’t understand that and I never understood things as they were coming because no one really explain things to me.

Music has always been my thing and I’ve always been able to sing even though speaking is not something that I was very good at though I was thrown into the oral program. Although  I could say words I could never communicate and I cannot hear my own voice. So my words wouldn’t come out clearly and I could not carry on a  conversation.

So yes I can speak but my voice would come out either way too loud or way too low or way too jumbled. So like most people who are hard of hearing or deaf, I either sign or type. If I’m in a situation where I’m forced to speak I will use what is known as SYMCOM which stands for simultaneous communication. Signing and talking. In school they would try to force me to speak it would never work for them. They would try to take away my communication device but because I was always taller than the teachers I can always get to them before the teachers could.

Most of my life was spent at school. At  home it was completely different I wasn’t accepted  at all. They  didn’t quite know what to do with me. Speech was forced and I never knew what anybody was saying.  I had to guess constantly and I would try to read lips which I can do but only 30% of what is said verbally can be read so I would misread or misunderstand it ”.

I asked LaVonnya about her communicational aids which she explained to me here:

“ I use mostly the symbol and text-based version of Proloqro. They are the easiest to program. They’re the most user-friendly and I don’t have to have somebody there when I can’t think of a word because they have predictive text. So if I can’t spell a word, it pretty much gives me the word. If I really need pictures because for some reason my brain is an processing the words at the time, I can just switch over and grab the app that has the symbols. Which is really good if I’m going to for instance McDonald’s my favourite place to eat. Because instead of grabbing a menu, I can just show the waitress because sometimes it’s way too loud. But some of the drawbacks are that they try to read the screen instead of listening to the voice which takes away my voice.

Another thing they like to do with him look at my caregiver or my family member instead of me and won’t talk to me.

That makes me really upset.

I’m raising a daughter who is Autistic. I’m trying to teach her to advocate for herself, but when she sees that others are speaking for me because the people are insisting on talking to my caregivers she is already hiding behind my caregivers because she doesn’t think they will listen to her either.

She’s afraid to use her device because she doesn’t think she will be heard.

My device speaks with a very clear voice so there is no reason why they would not be able to understand it. I like using it. I’m very good at using it and I put a lot of hard work into programming it.”

Below are some links to LaVonnya’s videos which are highly informative and very helpful.

The fact that people often speak over the heads of non verbals and completely disregard them in favour of the accompanying verbal caregivers is in my view blatant discrimination. It plainly affects confidence and self esteem as they are trying to communicate yet are ostracised repeatedly and portrayed as having no voice as they do not vocalise.

Next I spoke to Em Scott, Em is an admin in my Facebook support group for Autistics and parents of autistic children and was featured in my ABA article.

IMG_7113“My name is Em. I am 31 and have severe autism with mild intellectual disability.

I have two to one support and live in a home for people with mixed but complex disabilities.

I was non verbal up until the end of my twenties when I got sectioned in a intellectual disability acute hospital for four months.

As a child I communicated in just behaviour which left other people around me very frustrated and left me depressed and full of hatred towards people.

As a teen I echolalicaly spoke in singular words but I preferred to be non verbal so I rarely spoke,i didn’t feel connected to people so didn’t feel a need to talk,i made a lot of sound though through stimming.

As an adult,i speak but all my sentences are built on echolalic memory so it isn’t free speech as such but it allows me to have conversation.

I use Makaton and PECS to back up my speech,i have used both of these since a teen, I also used AAC for years until my favourite AAC software became unusable on current windows.

I prefer to use Makaton as my main communication, I instinctively do it first before my brain translates its imagery into language.

I believe verbal communication shouldn’t be pushed because it causes a lot of stress for us and for people who have been non verbal their whole life its expecting them to change their world, to take on another way of life.

Being non verbal isn’t a bad or upsetting thing,its freedom in a way as we don’t have the stress of language but at the same time its not good when people don’t think we can communicate in other ways such as typing and treat us like babies by speaking for us.

I’d still rather be non verbal-my life is so less complicated and difficult without the use of my mouth.”

Now after reading both these accounts from two autistics who use a variety of means to interact including Picture Exchange Card System, Makaton / American Sign Language and communication devices it should be clear to anybody reading this that verbalising is not the be all and end all of interaction.

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