Autism Communication Justice

Why AAC is a Human Right for Non-Speaking Autistics and Disabled People4 min read

Olympia Ellinas explains what it's like to have apraxia of speech, why many autistic folk are non-speaking, and why AAC devices are a human rights issue.

The minute I wake up, my mind is active.  I do not think in words.  I am about as pure a visual thinker as you can get.  I can visualize my life like a film, and pause at certain points, zoom in, zoom out, and rotate my viewpoint.

I don’t think to myself, “I’m going to make some coffee,” when I want coffee.  I see the coffee in my mind, that dark brown steaming liquid in my favourite cup with the words “I am sarcastic periodically” with “sarcastic” written in elemental form as SArCaSTiC.

I can mentally go through all the types of spoon I have in the cutlery drawer, and I can visualize the whole process in multiple formats: video recording, diagrammatic, flow chart, the list goes on…

coffee.jpg

This sounds fantastic, doesn’t it?  Having a near-photographic memory and being able to visualize things in such detail, in multiple formats.  Well, there is one problem, and that’s when I need to translate these thoughts into a spoken description.

The Broca’s area of the brain (the area that is responsible for speech production) also acts like Google Translate to convert images/videos to spoken word; however, my version of Google Translate is not well-developed, the coding is not perfect.  There are days where I cannot effectively translate at a reasonable speed, or days where I cannot translate at all.

What is the result of this inefficient translation process?  On some days, my spoken words are quite a few grades lower in articulation than the detailed flowcharts, logic diagrams, circuits, and videos that fill my mind.  “Like,” “um,” “and um,” “thing,” “yeah,” “sort of like,” and other relatively poor uses of English will frequently feature in my sentences.  My word choice and pronunciation is also affected, often significantly.

But there are harder days.  On some days, my brain will dump spoken communication to /dev/null and return 0 on the coding loop.  I am rendered speechless.

But that does not mean I do not have thoughts.

Never assume I don’t have thoughts just because I am not speaking.  It is just that my in-development Google Translate is not functioning.  My head is filled with images, but my Broca’s area in my brain has decided to go on strike for a while because it has a hard-enough time doing the 7am to midnight job as it is.

So what I do on those days, when my Broca’s area is on strike?  I could give it a pay rise.  What would that involve?  Over-medicating myself with caffeine.  And using stimulant medications that really are not good for me in the long run as they are a temporary solution to a long-term problem, and anyhow I really should not be doing this whilst I have a heart condition and an endocrine problem.

So a pay raise is not really an option in the long run.

The only sensible solution is to give my Broca’s area a holiday.  I don’t speak.

Say what

Oh no!  You think.  What would I do without speech!?

Simple.  I have the ability to type on my phone.  I have an app that I can type on with large print letters, and if I press a button, it will dictate what I have typed.  I even have the amusing choice of four different English accents.  Others use tablets or devices specifically-designed for AAC (augmentative and alternative communication).

Now, this is not unusual amongst autistics.  I know many autistics who don’t speak at all, or who speak “part time.” Their reasons may not be exactly the same as mine, but I have heard that my issues are actually relevant to autism.  Autistics have a higher incidence of having a condition called apraxia.

Apraxia is, putting it in basic and brief terms, when your brain and body don’t communicate well.  For me, it means that I walk right into doors and walls, I cannot throw or kick with any real accuracy, I can desire to pick something up but throw it at someone instead and wonder why on earth I did that.

I remember the terrifying-but-morbidly amusing incident where I wanted to chop a spring onion but ended up throwing the knife into the wall– and it actually jammed itself into the wall!

So, don’t put pressure on us autistics if we can’t speak– we aren’t being willful or rude.  We genuinely have a neurological programming syntax error that we cannot work around.  We may type on devices and have the device speak for us.

Some of us may use sign language.  I have actually tried to learn British Sign Language, but my apraxia is a huge barrier to this.  Some of us with more severe apraxia than what I describe in the paragraph above may point at letters on a large board.

It’s not weird.  It’s not something to mutter, “Why can’t you just speak?” about.  We aren’t being obnoxious.  We aren’t “crazy.”

There are multiple ways of communicating.

Speaking is not the only way.

6 comments

  1. Thank you for sharing Olympia.  I’m pretty sure I have apraxia of speech.  I’ve always struggled with verbal language.  In grade school I had to see the school speech therapist.  I attended school in one of the poorer districts.  So once people could mostly understand me I got dropped from speech therapy.  It was frustrating because I knew I still needed help.  So I learned to compensate by not saying certain words.  Once I got diagnosed with ASD as an adult I finally realized why I had communication problems.  What’s the name of the app you use?  Thank you!

    1. Hi.  Interesting to hear your story, but saddened to hear that you were dropped from speech therapy.
      The name of the app I use is Grid (currently only available on iPad), but I also have a free app on my Android phone that is a basic text to speech generator that uses the speech engines built into the Android OS.  Grid is awesome though.  I am hoping to buy a better iPad in the future though, as one drawback about my iPad is that it’s old and slow.  I just need to save the money up, which will take a while.
      The company that develop Grid is called Smartbox.

  2. Olympia- I appreciate your clear description of how your brain and body function differently.  It is a huge help to normals to have some understanding of differences.

    I offer a word of caution: The words “human right” is quite overused, in my opinion.  The implication is that no moral person would refuse this request/need.  The problem with this is that the list has gotten way too long and this world cannot provide all of these “rights” at this time, or not all at once.  This does not (necessarily) mean people are immoral or even uncaring, though many are both.  The rights to clean water or simple, physical safety (for migrants) is not on a par with the the need for aCC, so to me it makes more sense to use a different word. 

    ACC is clearly a need and crucial to full participation for many individuals.  Calling it a human right creates as much opposition as it does support.  It will not attract more support than using a word like ‘need’.  Tech companies are the logical players to approach first for the tech that autistic people need.  for example, Google partnered with the Christopher Reeve Foundation to offer their Smart Hubs to 100,000 people suffering paralysis, for free.  It’s a promotion, but a useful one. 

    Buzz words create buzz but do not necessarily win the war.

    Respectfully, Peregrina

    1. “Human right” is apt in this instance, as the right which Olympia describes is detailed in Article 21 of the UN Convention on the Rights of People With Disabilities, which is an extension of the Universal Declaration of Human Rights.

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