The Cruelest Month

[matril]

Here's a confession: I hate Autism Awareness Month.

Let me try to pick apart the ugly tangle of emotions this time of year elicits in me. It is, to make a severe understatement, complicated.

First of all, I'm a snarky, sarcastic person. When I'm posting something on Facebook, I usually try to be clever rather than sentimental. I've been severely tempted to post "Hey, what's this autism thing everyone keeps mentioning? I've never heard of it." I had to remind myself it would more likely make people uncomfortable than make them laugh.

I also have a problem with viral memes intended to "spread awareness." They make everyone feel better but rarely accomplish much of any practical purpose. That's not to say that I don't appreciate all my friends and family who have posted something about loving someone with autism, because I know Luke is one of those people and I appreciate the gesture. I appreciate their support. It's just that in my own life, I don't need any help being aware of autism. I'm basically in a state of perpetual hyper-awareness.

Then there's the fact that Autism Speaks, one of the prominent voices of autism awareness, is not well-liked by many members of the autism community. They're focused on a cure, which seems great until you realize that they can focus on it to the exclusion of actually accommodating people with autism. When you say that everyone with autism needs to be cured, it can imply that autistic people are a problem that needs to be fixed. I've heard some people in the community suggest we'd be better off calling it Autism Acceptance Month.

And here's where it gets even more complicated for me. I flinch at autism awareness, but I'm not calm and happy about autism acceptance either. For all the guilt I've had about not providing Luke with every service he could possibly need at every moment of his life since birth, letting him suffer through unresolved difficulties from his autism, I have an equal share of guilt about not embracing Luke entirely as he is, unmitigated by the wish that he wasn't autistic.

Autism isn't like a physical disease. It's a condition of the brain that affects pretty much everything about a person. It shapes their personality; it is a part of their identity. Ergo, if I don't like autism, I don't like my son.

I can't tell you how much mental anguish I have spent trying to resolve this contradiction and failing. Luke is not functional. He has minimal communication; he doesn't know how to navigate safely through the house, let alone outside the home. He needs one-on-one attention almost constantly. And yet whenever I imagine how nice it would be if he didn't have all these challenges, a bitter voice tells me, "You're just a selfish neuro-typical, trying to eradicate your son's identity or very existence."

A lot of autistic people have powerful voices. Non-verbal or not, they find a way to express themselves, and they express very strongly the notion that they do not want to be cured, that they do not need to be fixed, that autism is a valid way of thinking. And I want to support that, and I don't want to be selfish and try to force my son into a box that he doesn't fit into. But the truth is, I would give away everything I own if it would give me just one glimpse into my son's mind, if I could just hear him talk for one minute or see him type a sentence into the computer or meld my mind with his or whatever it would take to know who he is.

(How arrogant of me to think that neuro-typical communication is the only way you can know someone. I feel like I have to apologize to the autism community at large and then a thousand times to Luke.)

Autism is such an individual thing. It manifests differently in every person. For all I know, my own quirks and compulsions could stem from having some undiagnosed place on the spectrum. It would explain my social anxieties and irrational repetitive behaviors. But it wouldn't help me understand Luke any better.

This shouldn't even be about me. It should be about Luke and his happiness. And he's generally a happy person. Is it selfish for me to want his functionality to increase when he's largely happy without it? I find myself questioning everything I do or think in regards to Luke, fearing that I have the wrong motivation or the wrong attitude on top of all the other concerns. There are no straightforward answers. Maybe trying to find answers is itself wrong-headed.

Comments

[sreya.livejournal.com]

*hugs* I hope it's not presumptuous of me to say that I think I understand the struggle. You want to accept your son, but it's clear you also have an instinct that in a way he is "trapped" and cut off from you. And you just want to find a way to connect with him, even if it's not the usual way. You want him to be able to tell you whether he is happy or not, and when he is unhappy WHY he is unhappy, so you can help. You want him to have his independence, so he can grow and explore the world. There's nothing wrong with any of that. And there's nothing wrong with acknowledging that yes, this is a great burden on you.

While reading this, I remembered reading about Helen Keller as a young girl. Though not autistic, being blind and deaf had essentially cut her off from her family for a long time. It was only by learning to communicate in a different way that she could connect with her family and friends. You just haven't found that way with Luke yet.

As far as communities that oppose finding any sort of a cure - sorry, that's hogwash. I could understand not forcing someone to undergo treatment if they can express such a wish, but I pray that someday a treatment is available for those who want it. I would personally be very insulted if someone told me I should just "accept" my depressive and anxiety disorders. Or told me that I should just "accept" something in my child's life that is preventing him from growing up and being able to express himself and his choices.

Ultimately, the fact that you ask yourself these questions just means that you care, and that's the most important part.

[sonetka.livejournal.com]

I read this yesterday and kept trying to think of an answer that wasn't trite or silly, and while I'm not sure I can do that I didn't want to ignore your post either. I think it just comes down to the fact that you want to understand him, and in this instance the word "autism" isn't being used as a description of him or his personality, but rather as a shorthand for "the conditions which have made communication between us difficult to impossible." When you think or say that you hate autism, it makes sense -- you're not saying you hate Luke or want to remake him entirely in your own image, but you hate the fact that you cannot figure out what's going on in his head and how find out what he thinks about and what he wants and enjoys. Just like if you were suddenly dropped in, say, Kazakhstan and expected to adapt to the language and culture, and with no help from anyone already there -- nobody sane could blame you for getting frustrated sometimes and wishing you weren't there and could go back to the language and culture that you know.

As for second-guessing yourself about Luke and his happiness -- well, as parents, we want our children to be happy, but we also want to protect them. I don't think it's remotely unreasonable to hope that his functionality/adaptation to our system increase as he gets older, because you want him to keep on being safe and happy throughout his life once he's too old for you to take care of him. But I will say, with no intention to be rude, that I think you're questioning your own motivations too much -- I don't know what the LDS call it, but Catholics call it scrupulosity -- over-examining your conscience, basically. It's not sinful if every thought you have about Luke isn't pure and noble and accepting, just like it's not sinful to be frustrated with your non-autistic kids, which I'm sure happens on occasion :).

I do agree that "Awareness" campaigns in general tend to be a lot of noise but with comparatively little substance; they're not inherently bad but I'm always left with an "OK, what now?" feeling afterwards. As for a cure -- considering how multifaceted the causes are I have no idea how a cure could ever be created, but I wouldn't be opposed to one -- though I suppose there'd be controversy like there is around cochlear implants. If there were a cure, it would probably need to start/be administered very young, and there'd be a good case that you weren't so much destroying a child's personality as directing or shaping it, which is what parents are supposed to do anyway, aren't they?

[matril.livejournal.com]

Not presumptuous at all. You've encapsulated the struggle pretty much exactly. And let me tell you, when I watch the scene in the Miracle Worker when Helen realizes what the sign for water means, when it hits her like a bolt of lightning and she knows, I shed bucketfuls of tears. Every single time. Talk about resonating.

[matril.livejournal.com]

Thanks for your thoughts. Sometimes I do feel like I'm in Kazakhstan. ;)

I linked to this post on my Facebook page on a kind of whim, and it's been overwhelming how many people have liked or commented or reposted it like I'm some sort of autism-mother guru. I'm just muddling through this like anyone else. I guess it was a willingness to admit that that made people like it? But yeah, I think it's become an almost epidemic among mothers nowadays to be filled with guilt and self-doubt and guilt about said guilt and so on until we drown in a shame spiral. I'm prone to fall into it far too often. You're right it's a good idea to step back and allow for some degree of grace in what we do and say and think.