When Talking isn't Everything

This is a followup to my last post.

When Sam was first diagnosed, he was non-verbal.  And we were so frightened.  All we wanted was language.  His non-verbal state represented his autism.  If we could get it fixed then his autism would be so much better.  We could talk with him about his other problems, and then we could fix them.

But.

Autism is not just a deficit in verbal communication.  It is simply the first indicator we usually notice.

There are deficits in non-verbal communication, social interaction, peer relationships, social reciprocity and other things.

And understanding the words does not necessarily mean understanding the intent, or the message.  And being able to talk does not mean you are communicating.

If you've ever had a conversation with someone where you felt nothing you said got through, that what you were saying was not what they were hearing, then you know what I mean.

Speaking is good.  I love to hear my sons' voices.  I tell Nathan this every time.  "I love to hear your real thoughts.  I love to hear your true voice."

But speaking does not fix autism.

Just as there is a continuum of what autism means, there is a continuum of communication.

Nathan, who can rarely generate spontaneous communication, has the most rapid receptive language of my 3.  My 2 talkative boys sometimes require 3 requests, culminating with a shouted command from their frustrated mom to break through the static in their heads.  Nathan will hear one request, and move to fulfill it.  However, when things are overwhelming for Nathan, no spoken language gets through.  It is context dependent.

Sam can fill us in on some internal thoughts - "I need to pee."  "I'm hungry."  The other two are either not aware of these internal needs (unlikely in Nathan's case as evidenced by hunger meltdowns), not connecting the sensation to word (most likely) or unable to generate the words (often with Nathan.)

Because Sam has trouble accessing those internal cues and acknowledging his unpleasant feelings, he denies them.  Until they cause trouble.  If you've ever seen a geek trying to woo an attractive young lady you know one problem.  Or getting angry at people.  How do I talk to him about coping with anger if he refuses to acknowledge that he got angry during the day?

Speech is a lot, but speech depends on the parts of the brain communicating with each other.  And some of those parts still are not working correctly. And the connections are often so weak.  It is hard for those of us who have 'made it' or gotten speech from our kids to communicate how it IS nice, but not THE answer.  How being able to say some things (like "Your breasts are pretty.") creates problems that reveal a brain that still needs so much growth of understanding.  How being able to understand some things, but not the context or intent creates problems ("Everyone will laugh and like you if you pull down your pants.")

The other side of the deficits that create problems for those of us in autism are:
1. Problem behaviors(aggression, self-abusive behaviors, elopement, etc.) which are sometimes helped by the development of language, but sometimes not.  Aggression and SIB can in some cases be worsened by the person's understanding of their differences or misunderstandings generated by their other developmental lags.  It doesn't help to be able to talk to someone if the result is they call you a mother-f*cking whore and slug you because they are in total meltdown mode.  I believe that parents of kids with bipolar could bend your ear about this topic.
2. Co-morbidities like anxiety, bipolar, depression, OCD.
3. Level of supports.  Feeling like your child is getting what they need to be their best.  And feeling like someone has your back.  This is what makes coping with an intense situation doable.

I have always known that it could be worse.  It is actually one of the things that comforted me when things were so bad with Nathan last year.  There are things that families deal with that make my heart ache for them.  Considering putting your child in residential. Starting meds when you think they are poison.  Putting up with a horrible school placement because you have no other choice. Aggressions and SIB that keep your family in fear.  Cleaning up another G-D poop/pee/vomit.

And I also know that how bad it is is contextual- I might be able to deal with poop smearing because I have social supports.  But if my husband weren't here?  It might be the straw that broke the camel's back.  Every person's situation is different.  I used to completely hate it when he bit himself, but there reached a point at which I just looked at him and thought "at least it's just himself."  I'm glad I'm back to disliking it (since it represents how far we've moved back toward balance) but I still don't have the same revulsion I started with, that many people would have if their child did it.

It is how we view things, how much support we have, how many resources we have available and our own personality that determines how well we are able to cope.  There is a saying that "If you've met one child with autism, you've met ONE child with autism."  But the same could be said for families.  You could take the same child and plunk him down in two different families, and their ability to cope would be completely different.  Unfortunately the fates did not match up the supports available to the severity of disability.

What we have is the hand we are dealt by fate.  How we play it is our legacy.

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