A letter to an “autism mom”

Parts of this letter were written as a response to a blog post which was posted by a mother of an autistic child in which she stated that Suzanne Wright (cofounder of Autism Speaks)’s vicious article of Nov. 11* “didn’t offend her”. I replied, but I wanted this to find a wider audience. There are still some “autism parents” and other neurotypicals who do not comprehend why Autism Speaks is so offensive to many spectrumites; I can only hope that the more we write, the more people will understand. -cc

Dear Autism Parent,

I am going to try to respond in a civil way, even though I find your opinions very hurtful.

The reason why I respond with such anger when people agree with Suzanne Wright, and why people like Shannon des Roches Rosa represent how most of us (adult autistics) really feel about this is because at its core, A$ is dehumanizing all of us. Me, your child, the most verbal and non verbal extremes, anyone and everyone. And some parents are outraged, as I think they should be. The way Autism $peaks talks about autistic people (children and adults)  is the way that someone talks about a plant – no, a couch. They don’t speak to autistics or about autistics like they’re human. And don’t we all deserve to be treated like humans? Every one of us?

When Suzanne Wright uses phrases like “lost”, “missing” and the like, it is negating everything any autistic has ever done in terms of making strides to fit into “normal” society (which may or may not be a good goal anyway). If your child learned to use a letterboard? Big deal, he’s not holding a “normal” conversation. I got over my telephone phobia? Big deal, if I don’t learn to love it like “normal” people do. Everything is predicated on her and A$’ idea of “normalcy”. And the rules of the game are accordingly rigged.

I can drive, type and usually hold a coherent conversation? [sarcasm] I clearly must not be “autistic enough” to understand [/sarcasm] – never mind that there are days I go completely nonverbal, that there are times when my routine being thrown off by something as small as putting the cat-box in a new place reduces me to a huge meltdown. By contrast, someone like the child of another blogger I follow – nonverbal, requiring 1:1 support, well. [sarcasm] Clearly they’re “too autistic” to ever have an opinion or to communicate in a valid way [/sarcasm] (speaking is not the only way to communicate!). By the logic of people like Suzanne Wright, autistics will never have a say in their own destiny, regardless of what end of the spectrum they are on. I certainly can’t speak for you, obviously, but I can’t play that game. Wright’s rules are rigged against me and those like me from the start, like I said. So why play?

This is why it’s so hurtful to see parents who allegedly love their children (I say allegedly only because I do not know you personally) fall victim to this woman. By choosing to buy into what this woman is saying, parents are saying that they wish they had a different child; that they are suffering because their child is autistic and not normal. That they want the “autism” gone, that they want the “perfect child” underneath. There IS no perfect child underneath. Some parents I’ve read about can’t even say the word “autism” – they say IT or ‘his disability’ or something else equally vague and irritating. It’s not like Beetlejuice – saying “autism” three times won’t make your life explode or your marriage destruct.

I’m not a parent, and I know you may very well tell me to go away, that I’m not “really” autistic, that I’m “not like your child” so I can’t possibly understand what you go through. You’re right; I don’t. Because I was diagnosed later in life, but I also have a mother who shrugged and said “I’m glad you know now” when I told her I was autistic. I have a mother who understands that I need help with some things, but doesn’t blame me for the source of her money troubles or any of the issues my mother may have. When my mother was sad, I knew it, even as a six or seven year old kid. Do you want your child to know you’re sad because of them? Because even if they can’t tell you “Mommy, I wish you were happy”? They know.

Imagine being told that you are a burden and you make your parents’ lives harder.

Imagine that, if nothing else.

Even if you ignore everything I’ve said so far, even if you persist in being blind, wake up to one thing: supporting Autism Speaks is supporting someone who hates us. And no, that isn’t hyperbole. Suzanne Wright sees your child as a tragedy. Autistic adults and allied activists prefer to see your child as someone who can rise above the box that society – and perhaps, their parents -have put them in. What do you prefer?

Suggested reading:

http://wearelikeyourchild.blogspot.com/ – A collection of autistic writers detailing how yes, we are all like your child.

http://www.autreat.com/dont_mourn.html – “Don’t Mourn for Us”, by Jim Sinclair, an autistic activist who works with parents.

http://nonspeakingautisticspeaking.blogspot.com/ – The writings of Amy Sequenzia, a “profoundly disabled” (by your measure) autistic activist who is nonverbal and epileptic.

* I steadfastly refuse to link to Autism $peaks. Google it; it’ll be up there.

Advertisements

3 comments

  1. I am not an “autism mom”, I am a mom. My son is autistic, and I can’t tell you how grateful I am to all of the autistic people sharing their thoughts and experiences online for the world. Fuck autism speaks. It DOES NOT speak for my family. My son isn’t a family ruining burden, as Autism Speaks would have the world believe. He is awesome, hilarious, even without words, and full of love and wonder. while I’m at it, screw the people who support A$. It was their message of fear that lead to my despair when our son was diagnosed. It was the doctors telling us to hurry and get him 20+ hours a week of help, hurry, HURRY! or he’ll never have a chance! Fear mongering…I despise it. I know every human is different, but reading autistic writers has given me helpful insight into my son’s world, and it did it without the fear and hatred A$ spreads.
    Long story short, thank you for writing.

  2. This is the proper blog for anyone who wants to learn about this matter. You realize a great deal its nearly hard to dispute with you (not I actually would likely wantHaHa). You definitely put a new spin and rewrite on a matter thats been written about for decades. Great things, just excellent!

  3. I don’t even know why I never considered this, but maybe I’ve been living so long with hearing it. I don’t remember a time where people didn’t suggest I wasn’t a burden to my parents, not specifically. My mom has said she’s been called a “helicopter parent” a few times, but now she has a group of mom friends with Autistic kids who understand. Someone also was over here to fix something, who was a dad with Autism, I try to have my mom hire people who understand it because if they don’t they think they can just be really loud. He had a conversation with my mom, something that ended with “Well as long as they’re smiling.” which I guess was about the notion that people on the Autism spectrum are “forever children” and you should try to make their life as happy as possible despite their “condition”. In fact recently I’ve been trying to take on being more independent, and I’ve been getting upset with my parents who think they have to overprotect me, they say they’re the same way about my NT sister but she lives on her own.

    I guess what I’m saying is, I’ve never known what it’s like to live as someone who was considered normal. I couldn’t even mention wanting to learn to drive, without my mom jumping all over me saying I shouldn’t. I’m 31 years old, I’m tired of the idea of opportunities in my life passing by because people assume having a form of Autism equals being 10 years old forever. I’ve lived with being seen as a burden or a “forever child” for so long, I have stopped noticing it.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s