My Deficits of Executive Function

I've been reading this really excellent book about adults with autism by Nancy Perry.  

It's taking me a very long time to read it.  Not because it's obtuse or technical.  Really, it's very readable.  Lots of interesting stories to highlight her points.

No, it's taking me a long time to read it, because at the same time that I'm learning, I'm being forced to face a reality that I've managed to ignore.

At almost 15 years of age, Sam has very major executive function deficits that he may or may not ever be able to deal with independently.

Each EF deficit can be broken down into hundreds of practical skill sets that can be taught.  For example, we can teach Planning, Sequencing and Organizing for hundreds of different skills.  Following a recipe, taking care of an apartment, getting ready for school or work, writing a paper, shopping for groceries, personal hygiene.  The list goes on and on and on.  And it changes with each new phase of life.

But the deficit remains.  And for every executive function that she lists, I see that Sam has deficits in that area.

And for every executive function that she lists I have to stop, sometimes many times, to adjust and think "My boy may never be independent."

I don't mind if he lives at home or in a supported apartment.  Well, okay, I do.

I've always known, well for more than 5 years, that Nathan will almost certainly not achieve independent living.

And I remember thinking "If only Sam can talk, I will be grateful for whatever else we gain."  But I take that back.  I was lying.

You see, when you have a child with an uncertain disability, like autism, you find that every skill acquired means you latch onto new skills to dream about and pursue.  And, as they keep growing, you forget to compare them as much to peers.  For many years you lived in regret that they are not doing what their peers do.  That fades as you fall into a comfortable life with your child.  You think "I'm growing.  I'm learning to accept my child as he is."

Until one day something, such a book, wakes you up and reminds you that you have a child who is not like his peers.  Who has something very special to bring to the world, but who needs so much more help than his peers do.

You realize, like I am realizing, that you lack the necessary Planning, Sequencing and Organizing skills to get them to full independence.  And you realize that you really need to work on Regulation of Emotions.

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