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3:24am May 3, 2014
Anonymous asked: Heads up that Emma can speak. Not a lot, and not always relevant to what she's trying to communicate, but she does speak a little. Her quote remains just as awesome, just wanted to give a heads up that your comment isn't 100% accurate.

neurodiversitysci:

Thanks, I’ll correct that now.

Usually, actually, ‘nonverbal’ and 'nonspeaking’ people can speak.  Because there’s no real such thing as 'nonverbal’ versus 'verbal’.

There’s a spectrum of experiences between autistic people who can speak 1% of the time and autistic people who can speak 99% of the time, with every single part in between represented.  0% and 100% barely exist.  Most people described as nonverbal or functionally nonverbal have some ability to speak, or at least to repeat the sounds of words.

Moreover, it’s not just about how often a person is able to make speech sounds.  How much those sounds have actual meaning that connects to the thoughts in their head is also relevant.  There are people where you can tell their speech is just random words coming out at random times.  But there are also people who have seemingly quite good speech, but only some of it is communicative.  So there’s also a spectrum between 1% of your speech is communicative and 99% of your speech is communicative, but it’s rarely 0% or 100%.

And also how clear the speech is – there are 'nonverbal’ people who can actually speak, but their speech is so indistinct that it sounds like squealing or rapid chattering noises rather than words, and they are considered nonverbal.  

Bottom line, it’s not always wrong to refer to someone as nonverbal or nonspeaking if they have indistinct speech, or speech that does not connect to their thoughts, or they can only speak 10% of the time and only with great difficulty.  Because that includes the majority of people labeled nonverbal or nonspeaking.

And woe be it to an autistic person who applies those labels to ourselves for the same reason that parents apply them to their children.  I have spoken communicatively roughly twice in the past 13 years or so (I can’t give an exact number when I stopped speaking, because my transition into nonspeaking was a good example of a slow slide from 80% to 5% as it were).  I have the ability to repeat words without meaning, some of the time.  I can do “uh-huh” and “unt-uh” and a non-word noise that sounds like “I don’t know” and a few other noises in those regards, and I can sometimes swear or make interjection-type sounds.  

In any autistic child, this would get me considered nonverbal by parents and it would be totally accepted.  

As an autistic adult, I am subject to intense scrutiny and called a liar if I ever make one speech-like noise.  

I’m also called a liar because I used to be able to speak, even though my particular reasons for losing speech are well-documented in the literature and can even happen to people with Asperger’s and much more excellent speech than I ever had.  This even though I have never in my life hidden the fact that I used to be able to speak better than I do now.

There’s basically a huge double-standard where nonspeaking children get to be called nonspeaking by their parents even in some cases where they speak better than I do, but non-speaking adults, especially those of us who self-advocate in ways that are very threatening to some parents, are subject to a level of scrutiny that these parents would never permit to happen to their children.  I know someone who refers to his child as completely nonverbal and then posts videos online where his child is speaking communicatively, yet this same person calls me a liar when I speak less than his child does.  Something is wrong here.

Anyway, I don’t know whether Emma prefers to be called nonverbal, functionally nonverbal, nonspeaking, or speaking, or something in between.  I just thought I’d describe how complex the situation is, and how the words nonverbal and nonspeaking are generally used.

It’s sort of like… I know there’s problems with the Kinsey scale, but there’s plenty of straight people who are occasionally attracted to people of the same gender, and there’s plenty of gay people who are occasionally attracted to people of different genders.  I’m a lesbian who has been attracted to a man two or three times in my life, I am still a lesbian because OTOH I’ve been attracted to easily hundreds of women and nonbinary or genderless people.  I am nonspeaking despite very rare occasional communicative speech and somewhat more frequent non communicative speech.

Also 'functionally nonverbal’ is a term frequently applied to people who have speech, but their speech is not communicative, or not very communicative.

And a person can slide around on any of these scales in any direction:

The scale of how often a person is able to talk.

The scale of how much of their speech, when they do talk, is communicative.

The scale of how much of their speech, when they do talk, sounds enough like speech that anyone can recognize it as speech.

And being on the lower side of any of these scales, let alone several, can get you considered nonverbal or nonspeaking or functionally nonverbal.  It doesn’t have to be 100% because nobody is 100%.  Again, I don’t know how Emma identifies, but what’s said above doesn’t automatically mean she’s not nonverbal or nonspeaking.