What Surviving With Grief Has Shown Me About Living With Autism

My son Caleb has autism.  Mostly his autism is what has come to be known as high functioning, but high functioning isn't really a technical term when it comes to autism.  Along with his autism diagnosis, Caleb has sensory processing disorder, signs of ADHD combined type, anxiety, and a couple other seemingly in the grand scheme of things minor learning disabilities/processing difficulties.

He is also clinically profoundly gifted.



I'll be the first to say that I hate the term gifted, but in Caleb's case it causes an interesting situation due to his extraordinary memory skills.  He can have scripted conversations.  He remembers every conversation he has had with his therapists about various settings.  He knows what is expected of him and has learned enough to pull it off in public settings most of the time.  During his last clinical evaluation, the evaluator noted that she wasn't sure his autism was as mild as it appears.  She believes he is compensating effectively due to "proactive parenting, high intelligence, and quality social skills and speech therapy."

I live with him and I believe it 100%.

I see those signs in him when he starts to get antsy in a large group.  I see the physical and emotional strain that a couple hours in a social setting can have on him.

I also hear the "Caleb?  Caleb doesn't seem autistic to me."  "I've seen kids with autism and it's not Caleb."  "Seems like if you just let him alone he'd be fine."

It kind of reminds me of the "She doesn't look like she's grieving anymore" and "If she can laugh or smile about something else she must be fine now" attitudes and comments that I've been hearing whispered lately.

I guess I should be somewhat grateful that I look like I'm pulling off this pulled together thing.  I am trying to do that as much as I can.  On the other hand, I'm really not all that pulled together.

My senses are all in a state of permanent overload.  The noise, the lights.  I think I can even feel the waves people make when the walk through a room.  A busy room, lots of motion.  My brain can't process the input fast enough and I'm overwhelmed.

Quickly.

Even when I'm keeping up mentally with the busy energy flow of a room, my reaction times are both delayed and potentially explosive.   Even when my sadness, anger, grief, and depression are hidden, they are never far away.   Noticing the smallest thing can cause me to either withdraw from a conversation or shut down completely.  If I'm with people I don't care to share that part of me with, I can usually push through for the moment but it is costly later.

Usually for my kids when I can't keep it together on the drive home from the park.

Grief is always there, even when it seems like it's not that bad.

So is Autism.

Caleb compensates with knowing the right thing to do and pulling it off much of the time.

But at home, there are crashes.

Crashes that I'm understanding just a little bit better these days.

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