Susan's Blog

Saturday, March 11, 2006

Autism is not Less Than

“Even God had some autistic moments which is why all the planets spin.”
This enchanting thought came to me from a young reader who works as a peer model to autistic children. Her grandfather came to a reading of mine and gave her my book. This insight of hers took my breath away, and made me think more about autism as a way of being, rather than a disorder.

At each of my events, someone asks whether Nat knows that he is “different.” I think that people also wonder if he is unhappy, if he understands his difference enough to make him unhappy. It is still such an alien concept for people to think that autism is not equal to less than. It is endemic to the culture we live in that autism is akin to a disease, a disgusting malady that steals children and turns them into monsters. I have been guilty of those exact thoughts, during the time that I was first coming to terms with Nat’s autism. I think the monster part is because manifestations of autism, particularly of an autistic person who is untrained or misunderstood, can be so difficult for others to live with. Nat’s aggressive behaviors and his destructive tendencies made us feel as if we were living under siege, in a war zone. It is still difficult for me always to remember that Nat’s mind goes extremely quickly to blind rage and old behavior patterns when the triggers occur. But come to think of it, this is true for me, too. The minute a friend, INF, for example, goes AWOL and is out of communication, I go right back to little-girl mode, insecurity, sulking, despair, just like in my childhood. In those moments I truly believe that I have been abandoned. It takes a lot of thinking and diversion to bring myself back to my center. That’s just how I’m wired.

Same goes for Nat, then. He snaps right back into “Must pinch that stupid person” mode.

But recently, at two different events, people in the audience insisted that our autistic kids must really be unhappy because they know they are different. They cited examples of higher functioning autistics who expressed unhappiness at their difference. I was at a loss as to what to say. My instinct was to point out that anyone can feel unhappy if there is something in their environment, whether inside or out, that is not nurturing them. I am not autistic; I would be considered a well-adjusted, high-functioning human by most standards. Yet I have so many moments in a day during which I feel unhappy with myself because I am so different from those around me. Maybe I’m different from Nat in that I have enough language to talk myself through these moments.

But maybe he is better off than me because he does not have the language to understand what others around him may or may not think of him. Maybe all he has is an occasional frisson, a feeling of discomfort, a shimmer of unhappiness that remains unexplained — and then it passes and he’s fine.

If that is the case, then I envy Nat his autism.


The difference an autistic person feels and feels pained by is perhaps analogous to, but not the same as, what it is like for a person who is a racial or ethnic minority to be in a room full of people who are not. It is a difference that cannot be erased and that calls for those of who are not “the different” to change ourselves.

— added by kristina on Saturday, March 11, 2006 at 12:02 pm

I truly cannot understand why awareness that I’m different from most people must lead to unhappiness. I don’t want to be like them. There’s no need, as they already are, and I’m like me. I can be made unhappy by people’s reactions to my differences or by a world unsuited to me, and often have been, but the awareness itself only made me unhappy during the years I made myself miserable trying to ‘fit in’, i.e. tried to eliminate my differences.

I don’t see any inherent value in being the same as other people. I didn’t during my childhood and I don’t (again) now. The fact that I experience the world differently allows me to see things other people don’t, while they see things I don’t, and to my mind that’s as it should be.

— added by elmindreda on Saturday, March 11, 2006 at 4:53 pm

As for how Nat might feel… it does seem to be the case for autistics, that most are gravitated to the idea of “why would I want to be normal”?

I think that if people really bully the autistic person then he can start to understand how it would be better not to be autistic, but it takes brutality to get the autistic person to see things that way.

Bartholomew Cubbins sent me a link to a trailer for the new X-men movie (I don’t go to movies and I’m not a big fan of TV or DVDs so this is sort of out of my usual experience) .

In the new movie the normal people at “big pharma” have discovered a gene fix that will make the super-guys the X-men and women into normal people. I didn’t really realize what “X-men” were before… The gov’t is going to force the X-men to take the treatment.

At the end of the trailer a beautiful woman says to one of the X-men… “kill me, please”.

This is what it boils down to, if “they” can’t accept autism and encourage the person to love who he or she is, not just fight against who they are… then “they” are sending a message of “we wish you were dead”.

Can you imagine if people suddenly decided to cure everyone of their “ethnicity”? A pill to make everyone a WASP?

How would you feel inside? In a hurry to take the pill? To lose the very person you are???

I started to get teary by the end of the X-men trailer. I thought, “I can only be who I am.”

Like, “you want me to be someone else?”

This is the danger of “fighting autism” or saying “cure autism now”.

We autistics live inside autism, we can’t leave it. We never leave it. Not even me who passes for normal in many ways.

Love me, love my dog.
Love me, love my weirdness.

Thanks, for you blog, Susan.

— added by Camille on Saturday, March 11, 2006 at 5:10 pm

“I think that if people really bully the autistic person then he can start to understand how it would be better not to be autistic, but it takes brutality to get the autistic person to see things that way.”

Thank you for that excellent point.

— added by elmindreda on Saturday, March 11, 2006 at 5:21 pm

Susan, I am right there with you on this thought. I love that phrase…”Autism is not less than.” I know my child is not unhappy in any way about his life. How could he be? His every need is met, he gets to do things he likes most of the time, he has a family that loves and adores him. He doesn’t realize that he doesn’t have any real playmates, (he doesn’t like to play conventionally)….he doesn’t notice when people stare at him (but boy, I sure do). He lives in a world where there is no jealousy, insecurity, manipulation….who is to say that our world’s are better than his? Perhaps his is the best of all!

— added by Anonymous on Saturday, March 11, 2006 at 8:00 pm

Beautiful, Susan.
I think it *does* become different when self-awareness begins to kick in big-time. For me, it happened in late adolescence, and I spent the next 17 years in therapy of one kind or another for dysthymia (chronic subclinical depression). God is a supreme practical joker: it took Jeremy’s arrival and developmental trajectory to lead me to discover the true identity of my own — at which point so many previously inexplicable puzzle pieces fit into the AS frame it was uncanny. Diagnosis was a paradoxical liberation. I began to be able to forgive myself for my differences and actually *appreciate* them. But it wouldn’t have happened without the discovery of a community of fellow-travelers.

Kristina, I sometimes tell people that I live at the intersection of two diasporas: my ethnic/religious diaspora as a Jew, and my neurological diaspora as an Aspie. I think the skills that one develops to live a healthy psychological life as a member of one diaspora, apply equally well to the other.

Camille, your reply brings to mind a passage from Jim Sinclair’s “Don’t Mourn For Us” that still sends chills down my spine when I read it: “This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.” Until parents can let go and learn to *accept* that their kids’ pathways through life will be different (not necessarily *impoverished* though), that their ways of sensing, thinking, feeling, and *being*, however different, are *legitimate*, Jim’s words ring true. Jim’s goal, and mine and yours, and that of all of us in the autistic self-advocacy community who engage with non-autistic parents and seek out allies, is to promote that acceptance, and make those words a thing of the past.

— Phil

— added by Phil Schwarz on Sunday, March 12, 2006 at 11:11 pm

re. “Even God had some autistic moments which is why all the planets spin.” —
Credit where credit is due: this is a paraphrase of Jerry Newport (who was less equivocal: he just said flat out “God is autistic, which is why all the planets spin.” :-)).

— added by Phil Schwarz on Monday, March 13, 2006 at 3:36 pm