Susan's Blog

Saturday, April 2, 2011

Autism helps me get over myself

Sometimes we think autism is the worst thing a parent could deal with, right up there with life-threatening illness.  Those of us who have years of experiencing a child’s unpredictable outbursts and scary aggression, sleepless nights and seizures, bolting or numb, withdrawn behavior — we hate what can accompany autism for real reasons.

Or is that put too simplistically?  Are we hating autism, or is it important to tease that emotion apart?

I am a believer in psychotherapy, in looking as deeply and honestly into difficult emotions as possible, because I have learned firsthand that facing that stuff, understanding your uglies, is paradoxically the way into happiness.   Looking it in the eye and saying, ultimately, “Yeah, that’s me,” is the first step towards changing that.  I have found that acceptance leads to change.  Something shifts for you inside, and then outside.

I realized recently that I have made it a personal goal to learn to embrace all that is me, and softly try to change the things that make me suffer.  Understand that this is not a narcissistic, self-centered, contemplation of the navel kind of impulse; this is about change and progress that emanates outward and affects others positively, too.  Shifting my focus from externals that bother me, to understanding my own response, ultimately eases that pain.  And then things start to change around me.

I’ve written a great deal about that moment on the couch with Nat, nearly 10 years ago, when he was 12 — his horrible fake laughter driving me crazy, wringing me out, and then, what that turned into:  a spark, a shared laugh, a real bond.  And why?  Because I dove into it, rather than trying to stop it.

Who wants to dive into shit?  None of us.  I’m remembering when I interviewed Donnie, the first manager of Nat’s group home, the reason we decided it was okay to let him go there.  Donnie is just a guy, bright and happy, doing his job — and yet a hero.  Donnie said something like this to me, “How many of us start our day thinking, ‘wow, I can’t wait to get in there and start cleaning up poop accidents’… but it’s times like seeing the guys make it to the Special Olympics State Games that made it all worth it.”

There’s something about dropping the barrier that’s keeping you from the ugliness.  Letting go of that is ultimately life-changing.  Life change can be big, like going to the State Games, or it can be tiny, like a moment on your couch when you stopped feeling sad and mad about your kid.  I bet that if you think about it, you will see that a lot of your happiest moments occurred when you least expected them and in fact at times you were dreading something.

I was riding into work on the T and I ran into a colleague I only know from here and there in the English Department.  I always try not to run into people I know on the train because there is something about having a conversation in front of silent strangers that I find really awkward.  But, there he was, and I settled into a chat, that brittle first-time getting-to-know-you conversation I just dread.

Eventually the conversation turned to a recommendation for a CPAP pillow to help with my sleep, what else do we do, and I mentioned that I have written several books.  So, of course, what are they about, and there we are, talking about autism.  I don’t want to talk about Nat, my feelings, my discoveries, my heart’s most important thoughts to someone I don’t know who I’m going to see almost daily.  I’d rather choose my mode — writing or giving talks.  But okay, there’s something about this guy’s eyes that are kind, a kind of ease in standing next to him, that makes me feel like I can share Nat with him.

I found myself telling him about Nat’s jobs.  Because I’m so accustomed to having people react with unwanted sympathy, I braced myself but went ahead nevertheless.  I really do believe that the General Public need to know about Nat, and get pushed out of their comfort zone the way I have been by him and autism.  But in doing so, I have to push myself out of my own comfort zone and take risks like this.

“Well, Nat delivers messages within his school, and he serves lunch, and he fills snack orders from other classrooms,” I began.  “He also delivers coupons at Papa Gino’s, in the neighborhoods there.”  I was reluctant to talk about how he makes boxes at Papa Gino’s, because that one sounds the most like the sheltered workshop kind of job, the one I dreaded most for Nat when he was younger.  Assembly of things:  right up there with janitorial tasks; not the kind of job I once envisioned for my firstborn, grandson of Harvard graduates, teachers, professors, son of a mathematician, yada blah blah. But, fuck it, stop being such a snob, Susan.  Look at it in the face.  Say it, thinking about Nat, bouncing around, saying, “You make boxes PaGinos!”

And so I did:  “Nat also makes boxes at Papa Gino’s.”  I paused.  “I know, you’re probably getting a little depressed at this point, thinking of a 21-year-old whose favorite job is making pizza boxes.”

“No, actually,” my colleague said, “My first job was delivering pizza, and my favorite part of the job was when there was nothing else to deliver, so we had to make boxes.  I found it really comforting.”

It felt like a pile of mud had slid right off of me.  Suddenly I was clean, I could breathe.  I knew then that it was going to be a really good day.


You are good! I LOVE this story. Well, actually, I kinda love your colleague. And you, of course. It’s like the Guy in the Sky knew what we needed. So he gave us a great gift of a real, messy life. Autism has helped me get over myself, too!!

— added by Rose on Saturday, April 2, 2011 at 9:30 am

“Are we hating autism, or is it important to tease that emotion apart?”

I find myself psychoanalyzing often as well… I don’t always hate austim. If I were to categorize my negative emotions regarding my special needs child, it would be as follows:
Sometimes I hate:
-my body, because it needs far more sleep and care than i am allowed to give it
-ignorant people, that bring up emotions of futility, hopelessness, irritation, anger – and then guilt, because I know that they really just dont know
-The fact that I dont get to do what I want to do [read, paint, write, whatever]. The amount of self sacrifice can at times be overwhelming.
-sometimes I hate autism, for even being a reality. For taking away chances for my child to enjoy what I have enjoyed in the same way I have… Which in turn, is just a selfish way of explaining that I feel I have lost a way to truly identify with my child’s life. Isn’t that a real need of human beings? To feel that shared experience, whatever that experience may be?

Hmmm… Thank you Susan for the food for thought today. 🙂

— added by Daleth on Saturday, April 2, 2011 at 6:57 pm

You know, I gotta say just one more thing. Ben had many “fake laughs” up until probably 3rd or 4th grade. I recognized once that it was the laugh of a friend of his, and it just seemed creepy. But when he starting talking at 18 months to age 6-7 (NOT communicating, it’s NOT the same) he used to copy long strings of conversation from tv shows, inflection/voices and all. Maybe he thought that was how you were supposed to laugh…

He did have his own laugh, also, which started coming out about the same time the fake laughs left.

— added by Rose on Sunday, April 3, 2011 at 8:11 am

There’s something pleasing about repetitive tasks. I happen to enjoy things like sorting things and folding laundry. I would have LOVED folding pizza boxes. I had a college job in a makeup store and one of the best parts of my day was sharpening the worn-down eyeshadow “tester” sticks and cleaning mirrors and display cases.
I wish there was a career as a professional neatener-upper that paid a decent salary but lacking that option, I became a lawyer.
I wish people didn’t assign status to particular jobs.

— added by Sunni on Sunday, April 10, 2011 at 5:19 pm

Sunni: Me, too.

— added by Susan Senator on Sunday, April 10, 2011 at 5:20 pm