Speech Is Not Language

Perhaps one of my greatest frustrations with A has been her inability, even after years of therapy, to gain functional speech.  She has made a lot of progress, from nothing to sounds and many approximations.  But without augmentative communication in the form of an iPad, she is very difficult to understand.

It was cute to see tonight while she was cleaning up, she picked up a shape puzzle and put the pieces all in, and Mom and I listened ... oh so quietly, if we listened, we could hear her verbally label all of the shapes ... oval, star, square, rectangle... but even we had to listen so hard to make it out.

Many people look at A and have low expectations of her because she cannot speak.  A uses this to her advantage to get out of doing things she'd rather not do.  The assumption is that if she cannot speak she has nothing she wants to say. 

But, of course, nothing is further from the truth... there have been several times in the past where A has looked at me, said something I could not make out, and then was frustrated she had to go to her iPad to tell me something that may or may not be quite what she was trying to communicate.

In many journals, outcome in autism is associated with the "acquisition of language".  Clinicians will often say, "does A have language?"  But that is not what they are really saying.  They are really saying does she have verbal speech that is functional to communicate.  Language and speech are commonly related, but they are not the same.

A child like A might has language using augmentative systems (eventually we hope she will simply write her thoughts and have them read with voice output).  She communicates with a voice output system (Proloque2Go) that works like an electronic version of PECS, but with much better organization.

A child with speech may still not have functional language.  Some children who are fluently verbal still use PECS or other augmentative systems because their speech is not functional.  It is clear speech, but does not make sense, or communicate the intent of the speaker.  A child who can repeat anything you say but say nothing spontaneously based on internal motivation has speech, but not language.

My son T has good speech and language, though he struggles with a lot of jargon and some delayed echolalia.  Sometimes he drifts into "jibber jabbering" where very little communication occurs.  He struggles to express his thoughts sometimes.  But I have seen other children who use speech more like a "stream of consciousness" where almost all thoughts are being spoken, with little clarity of communication intent.

For A, what makes me feel hope is the increasing number of adults with autism who are non-verbal, yet are leading meaningful lives with a degree of independence, such as Carly Fleischmann, Jeremy Sicile-Kira, or the men (Tracy and Larry) of Wretches & Jabbers (a highly recommended film).

My sense is there is a sub-type of autism, and I think A has it, along with Carly and Jeremy and the men from W&J, that causes severe apraxia of speech.  Jeremy, Carly, Tracy and Larry have all said their bodies do not co-operate with their desires - they don't move the way they direct them to move, and they struggle with intense sensory dysfunction.  Having it explained makes me feel both happy to have understood A better, but also sad in knowing what she struggles to do in order to interact with her world.

I think Jeremy says it best...

"Good things  about my autism is my ability to see beautiful colors in everything I look at. I see bright colors even in  dust."

I have often wondered what A sees when she looks at things.  I wonder if she sees bright colours too.