Susan's Blog

Monday, June 1, 2015


My left knee meniscus is badly torn. When the hell is it going to stop hurting? Maybe never. I just recently found out, that this rubbery band that runs horizontal through my knee joint tears if you twist it (like during intense bellydance) or press down way hard (like during intense biking) or absorb the shock of riding over rocks and stumps (like in mountanbiking). So, at 52, you can’t expect your knees to like that. They’re ridiculously delicate. To fix torn stuff in a knee, you can clip the ripped part out, or you can suture the torn parts together, but the thing generally does not scab, scar, or really heal. There’s just not enough blood there. Blood is the glue — the life’s blood if you will — of the body. You need a constant bloodbath inside injuries to get them to come together peacefully.

I’ve found that in Nat’s adulthood, some of the wounds are still not fully healed, like my torn meniscus.

To the chagrin of many adults with autism, for parents, the term “wounds” is accurate. To many autistic adults, this feels like an insult – especially if they fully identify with autism. If they wear it as a badge of pride, a full aspect of their personality, you bet it’s an insult for the NT’s (neurotypically-wired people) to say that your child’s autism diagnosis wounded you deeply.

But we don’t mean it as an insult. It is a description of a state, of a feeling we have. It coexists, side-by-side with our love, admiration, hope, and all the other lovelier feelings. But if you are a person with a diagnosis that makes distinguishing grey areas and tolerating illogical anomalies, it will be hard for you to understand the many shaded band of crap feelings we NT parents harbor, that rest like steamy shit clouds over our rainbows of good feelings.

(Sorry about the extended metaphors and foul language but this is my blog, after all.)

That might be the difference between neurotypical parents and adult autistics. For it is a laceration to the parent to learn that your child is going to struggle terribly and that the world is not yet set up to accommodate him. This is the issue that has remained the same for me even in Nat’s adulthood because I watch him try to navigate the world and he is so ill-equipped, and so is the world. Something always interrupts his connecting words to himself. Whether typing or talking (so please don’t tell me to try typing. I do get him to type but it is still crazy hard for him to keep the waves of – whatever – from breaking his concentration.

Nat cannot even tell me he feels sick. He does not say, “I am hungry.” Finding words for him is like chasing bubbles; you might actually catch one on the eternal breeze but it will likely pop when you touch it.

I don’t even know if Nat knows that he’s different – very different from most people. But, knowing Nat, who listens to everything even though he appears to be in his own thoughts and language – he knows something about his difference. It could even be that he does his self-stim stuff to separate himself out further. Like he’s given up, mixed with a big bravado-like “fuck that noise,” to the rest of the neurotypical conversations around him.

I want to grab his brain and squeeze it between thumb and forefinger and shout, “Focus!” Which is a very ugly, ineffectual thing for a mom to do. It’s like the massage therapist who growls, “Relax,” when he’s working your knots. Shouting, “Focus!” at Nat is the tsunami that crashes over his concentration. That’s the real autism tsunami – the waves and waves of interrupts they encounter.

I want to stroke his brain in silence so that he stays with me, and in lying still, utterly relaxed, the words will come into focus like a highway sign as you get closer.

I want to find a way to get blood to flow, over his torn neuron connections, over my flaccid cartilage, and make it better.


Susan, think this is one or your most raw, and at the same time most moving, blogs. I envy your ability to just pour it all out there, great and thoughtful words.

— added by Sue Lowery on Monday, June 1, 2015 at 1:25 pm

Thanks, Sue. Hope you’re doing okay!

— added by Susan Senator on Monday, June 1, 2015 at 1:26 pm

Susan, yes, just a thousand times yes. This was so articulate, so much of what I think about so often when it comes to Justin. Thanks for this. Will always be grateful I found your book ten years ago at Barnes and Noble when he was just diagnosed and I had seven minutes to myself to read. Your writing helps me clarify things and grow.

— added by kim mccafferty on Monday, June 1, 2015 at 1:27 pm

Thanks so much, Kim!

— added by Susan Senator on Monday, June 1, 2015 at 1:29 pm

This was said so beautifully and achingly truthful. I hurt for you and your knees and Nat.

— added by shelly Senator on Monday, June 1, 2015 at 1:36 pm

Love you, Mom.

— added by Susan Senator on Monday, June 1, 2015 at 1:44 pm

Love you, too!

— added by shelly Senator on Monday, June 1, 2015 at 7:23 pm

Nobody writes about autism with the passion & honesty that you do. You are quite an amazing woman!

— added by Michael Goldberg on Tuesday, June 2, 2015 at 11:55 am

Wow, thanks Michael!

— added by Susan Senator on Tuesday, June 2, 2015 at 12:00 pm