Susan's Blog

Thursday, June 25, 2015

About Difference: If I had a Hammer

Today I got an email from someone in Nat’s life, suggesting other possibilities for his silent times. This guy, whom I think is very caring and wise, had downloaded info on autism and catatonia right after I told him about our neurologist’s suspicions. He felt in his gut that this was not quite it. Instead, he felt that what he’d been observing was not a “freezing-up” on Nat’s part at all, but rather, a withdrawal that suggested depression.

I spoke to Ned about this and he said, “It’s a whole Rorschach test.” Exactly. Everyone looks at Nat with his own filter, his own experiences. Our neurologist is one of the best in the country for autism, and she suspected — or feared — catatonia. But that is the population she sees. If I were to take Nat to a psychologist — someone who could communicate successfully with him — would he be able to uncover reasons or at least signs of depression?

Of course, such a psychologist does not exist. Every time I even hinted at wanting to get Nat a psychotherapist just to check in on this possibility, throughout his life, I was ultimately referred to a behaviorist. The implication of such a referral, of course, is that any of his concerning behavior is due to some sort of distasteful autistic activity, and not to something in his life, in his thoughts, that saddens him. (Please be assured that “distasteful autistic activity” is not something I would conclude or say, but rather, what I imagine other less-evolved humans would think. Basically, the neurotypical world Nat grew up in had one big message for him: you are not good the way you are.)

Am I overstating this nasty bias on the part of the general public? I don’t think so, but that, of course, is my filter. I have always sensed, noticed strangers’ responses to Nat’s “stereotypies” such as flapping (I call it his puppet hand) or talking to himself in his own language. From babies to old people, everyone neurotypical can sense that Nat is Different and therefore someone they can be curious about, at best. I would welcome an open-minded, kind curiosity — though maybe not even that. I usually do not like people’s assessments or questions about Nat no matter how well-meaning. Other people’s word choices and unintentional judgment and downright stupidity about my son just plain bug me. If I trust the person, I try to correct them. I am that obnoxious. God, even the wrong kind of look when I tell them that no, he did not go to college even though socioeconomically it is a given for my children. The sad wondering. Hey man, I don’t need you to wonder. College ain’t for everyone, the shopping carts at Nat’s supermarket are not going to put themselves back.

If you were to dig deeper, you might detect that my filter is shame. I am a big believer in the muddiness and complexity of feelings, and so I will admit that there is that in there somewhere. The shame is mine. How I was so irresponsible as to give birth to someone who cannot survive in the world on his own. How did my body dare fuck up so much? Not in creating Nat, God no, but in being unable to teach him how to survive. My shortcomings become so obvious when you see how much Nat needs. And he’s my darling, and I cannot do right by him.

My shame, ironically, is for the others in the world who are clueless. I am embarrassed that they forget their humanity, their manners. That they betray their own shortcomings in their limited response to Nat. Their filter, too, is their own, and I often hate them for it.

“When all you have is a hammer, everything looks like a nail,” Ned once said to me, explaining this phenomenon of others’ filters. Well, I guess my response to that is, let’s build something great with that hammer, something new and beautiful, starting with how you look at my Nat.


Took my kid to see Sound of Music Tues. He’s now 13, taller than I and of course there are no family washrooms. I stand tall, hold his arm, and dare anyone to question me. Nobody does. My ability to deal with “others” vanished long ago. I no longer care, I no longer apologize. He does amazing, they can deal with the “quirks”. Plus, I took him on an afternoon full of school kids on field trips… my compromise. Ironically, they never blinked, and the seniors didn’t either… It’s that middle group…

I am sooooo tired of the “did you ever see, read, hear about..” from people WRT autism. Like, DUH!!! Did’ya think maybe I might have read everything I could find… I know, they mean well.

I took mine to the eye Dr’s a couple of weeks ago b/c something was “off” and I truly expected to be told it was in my head. Turns out, my kid either sees double or his eyes work independently. Either way, he sees better than I do so we’re off to the “Institute” where they have the toys to assess him properly.

It never ends… Hopefully, at the next appt you’ll get answers and a place to start. You may feel you don’t have enough professional help, but all we have is the Pediatrician. The Child Psych’s, the Dev Ped’s are diagnostic appts only. They never see anyone else… even Speech and OT is a problem.

— added by farmwifetwo on Thursday, June 25, 2015 at 11:15 am

Yep, FW2… something’s gotta give, soon.

— added by Susan Senator on Thursday, June 25, 2015 at 11:46 am

I believe in exploring where one’s gut leads. Even one nugget is valuable info in understanding complexity. Do not neuropsychologists, some at least, have a gift in discerning the inner well-being of someone with autism?

— added by Steph on Thursday, June 25, 2015 at 1:16 pm

Susan you are doing so right by Nat, the best you can. And always looking to do better. Sometimes, it’s okay to sit and remember that you are enough. You are doing enough. It doesn’t mean that you won’t follow every lead and explore all of the possibilities, but that at this moment in time, it is enough. You deeply appreciate and love your son, it leads you to help him live with more ease in his life.

— added by michele on Tuesday, June 30, 2015 at 9:54 pm

I can relate to so much of this Susan, but it’s that third to last paragraph that gets to me. I’m so tired of suggestions too! And yes, over the years I’ve come to see how limited people are when they relate (or attempt to relate) to my Justin. I still find it painful. Not sure I’ll be getting over it any time soon…

— added by kim mccafferty on Monday, July 6, 2015 at 10:28 am

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