Tuesday, April 02, 2013

Autism Understanding: Day Two

Potato chips are
Duck food. Food for ducks. Duck FOOD.
They will make YOU sick!

Processing is something Joey often does "loud and proud." He repeats phrases and words, over and over again, rolling them over in mind and mouth and ear. He watches how you react to them. He giggles if he thinks they are funny. If you say something mean to him, or in a tone he doesn't like, I will hear it for weeks- exactly as you said it.

This is advanced echolalia.

Often when new caretakers and therapists meet Joey, they ask why he is not diagnosed with Asperger's Syndrome. I believe this question is rooted in a basic ignorance of autism, and of Asperger's Syndrome. As is not just "an autistic who speaks." Not all kids with "classic" autism are non-verbal. Being verbal doesn't immediately relegate you to the title "Pervasive Developmental Disorder- Not Otherwise Specified" (PDD-NOS). These labels aren't about functioning or not functioning. They are often connected to how and why these kids learn about communication and its uses, what ways they try to socialize and communicate, and yes, how successful they are in various ways of coping with the world around them. The blurring between labels is why the new DSM is going to umbrella various terms under "autism spectrum" instead of keeping them as separate diagnoses.

The hallmark of Asperger's Syndrome is the development of language that is recognizable as "in the normal range" by neurotypical benchmarks. Joey does not have this. Yes, he speaks. We have worked very hard to help him learn to communicate in a world dominated by people who are not autistic. He has become pretty decent at using the tool to communicate. But his speech is not "normal." His ways of considering the world around him and processing it are all his own. And often, it is rooted in a connection between words, phrases, and emotions, which he can then piece together into recognizable language when needful. Whereas Temple Grandin talks about "thinking in pictures", I think Joey on many levels "thinks in phrases." When he is presented with a communication opportunity, he spins through words and phrases he's heard before, how they were used, what labels to put into them. He picks the ones he thinks he will be useful, stitches them together, and out they come.

Every time Joey speaks, he takes a risk. Will these be the words I needed to respond? Is this was they were expecting?

It makes answering questions a horrible, awesome, overwhelming task. First, you have to process the question itself. What are these words saying? Do we have similar words we can process and are "on file"? What kind of response is expected? Do we have similar situations we can use to help? Then we have to process out an answer- which may be unique in context and wording. We have only a few familiar words in the question to attach meaning, and to find in our "files" matching expected and appropriate responses. It doesn't matter if he understands what he just read, or saw, or heard. The question is a separate processing task, unrelated, isolated, and with so much going in that it exponentially increases the risk and energy to respond.

Speaking requires a great deal of energy. You can imagine what a test might do to Joey. How can you evaluate someone's understanding of concepts when it is all they can do to process the evaluation tool itself?

Yet Joey knows what is expected. So he keeping playing with the words, the phrases, bouncing them about his mind, his mouth, his ear. He keeps trying, and trying, and trying.

And then we wonder why he's so anxious and frustrated all the time. Silly us.


Suzanne said...

Wonderful post. It explains very, very well being verbal doesn't mean you can communicate easily. I love the "thinking in phrases" phrase! That is just how I think my Janey thinks---not in pictures at all, but in phrases. Thanks for posting this!!

farmwifetwo said...

My eldest is fully verbal and appears "normal" but if you listen... it's not "normal". It's also not Asperger's. Actually, it's originally Non-verbal learning disorder but he started with the full s/l delay and didn't catch up until he was 9... mostly.

Therefore, mild autism.

Probably with the V it's now social communication disorder.

Confusing :)

But put him, his bro and his cousin together... makes perfect sense. The mild, the severe, the aspie... they are all different in how they talk, socialize, and view the world around them.

I leave it to the professionals to sort out.

Anonymous said...

This is my take on that. http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_1996962.html