To the parents who said that Suzanne Wright’s Op-ed reflected their experience with their children,
I want you to know that I hear you.
I want you to know that I do not paint Autism with just as broad a brush as Mrs. Wright did.
Autism is a spectrum. A spectrum as vast as the entire human experience.
A spectrum upon which there are indeed people who cannot manage the most rudimentary aspects of self-care without significant support.
I do not seek to erase your experience, and more importantly, your child’s experience, from Autism’s narrative, any more than I will stand for my child’s experience being twisted into a narrative that is not hers.
Autism is not unicorns and rainbows.
Not for us, nor anyone I know.
It is a disability.
A disability that can make communication challenging, if not seemingly impossible.
And with no accessible means of expressing one’s most basic needs, life can be excruciatingly difficult, not just for those who are desperate to be understood, but so too for those are desperate to understand.
There is a reason that I’ve written here again and again:
To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …
Our autism is just one house on the block, not remotely representative of its neighbors.
Our friends need help.
And by God they need it now.
A reader left a comment here last night in which she said that even the worst things said by Autism Speaks were things that she had heard “vehemently and heart achingly” expressed by moms in her online support group every day. She went on to say,
It does suck, it is hard, and it does feel like I, our family and my marriage has suffered intensely at times because of Autism. Yes, there are joys and moments of victory, but so were there in the Holocaust. If I had the choice I would NEVER pick autism because of “everything I’ve learned from it”. All I have to do is look at every counseling session, SIBR or questionnaire that I’ve filled out to see that what they’re saying is true. Would I love to be like one of the women who say child birth is “a little intense or uncomfortable”? Yes, but that would be a lie. This has been brutal, heartbreaking and beyond anything I ever could have imagined. To be completely honest, on my part, I agree with much that has been said; but the truth hurts. Deeply. I love my son and would never give him up, even if I knew before he was born what we’d go through. But I also sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, any social gathering for that matter-even bowling or going to the grocery store can feel like I’m being beat by this awful disease! Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it. Some people have the luxury of money or extended family to rely on, many of us do not. Should we make the best with what we’ve got? Absolutely, but that doesn’t mean pretending to the rest of the world that it’s a “gift” or anything short of an ongoing challenge. They don’t advertise Boot camp as a getaway, neither should they make autism out to be just something “different than expected”. That would also be completely irresponsible & untrue. Maybe not for you, but for the hundreds of mama’s I know who share their daily challenges it’s absolutely overwhelming at times.
I share this comment not to single it out, quite the opposite in fact. I am highlighting it because I know it is representative of a lot of others out there. And I want them – you – to know that you are heard. And because I want you to see what I wrote back.
This is what I said.
I hear the hurt in your words. and I’m so glad that you have a support group where you can talk to others who have similar experiences and vent about how you feel. Because it’s necessary to have a private place to be able to say things that you would never want your child to hear. For any parent, that’s important.
Because when we write about those feelings here, or on a website, or in any public forum where they are on view and will remain accessible forever, we speak in front of our children and in front of autistic adults. When we talk about the entirety of the Autistic population as “existing but not living,” “kidnapped,” “lost” etc, we negate the vast spectrum of experiences that Autism comprises.
When we compare Autism to the Holocaust or call it brutal, heartbreaking, or an awful disease, we erode the humanity of everyone here who shares that neurology.
No one wants you to sanitize your story. This isn’t all unicorns and rainbows. Some of it is really damned ugly and hard. But I guess what I’d ask you to consider is whether or not you would say this not even just in front of, but TO your child.
Would you say, “This has been brutal, heartbreaking and beyond anything I ever could have imagined. To be completely honest, on my part, I agree with much that has been said; but the truth hurts. Deeply. I love my son and would never give him up, even if I knew before he was born what we’d go through. But I also sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, any social gathering for that matter-even bowling or going to the grocery store can feel like I’m being beat by this awful disease! Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it,” TO your child?
Because when we say it here, we’re saying it to all of our children and all the Autistic adults who are here with us.
I’d urge you to read Sharon’s comment above, about what happened when her son came upon Mrs Wright’s post and how it made him feel. Or Zoe’s response to your comment to see how it made her feel. You might say your son can’t read these words or wouldn’t understand them. I don’t by any means want to put words in your mouth, but if that were to be the case, I’d ask you to reconsider that notion as we continue to see more and more evidence that Autistic people, speaking, non-speaking and everything in between, are perfectly cognizant of their world, if not far more so than their NT peers.
I hear you. I really do. I have a lot of very close friends who experience Autism very, very differently from the way do. Who, or whose children, live with overwhelming struggles – with no discernible method of communication life is hard. And help is needed. As I said in the post, both short and long-term support is needed urgently.
But it can’t come at the cost of the safety, dignity and self-esteem of your son, or Sharon’s son, or Zoe, or my daughter. And I firmly believe that it doesn’t have to.
Help and support are needed. Urgently, desperately needed. No one here is denying that fact nor asking that anyone else do so. I have spent my time, my money and every bit of energy I’ve got trying to get that help. And I will continue to do so and to stand beside those who do. But not in the way that Mrs Wright is going about it. Because the ends do not justify the means when the means ultimately destroy our children and any hope they may have of being a part of the greater community.
The children who are right here, along with Autistic adults and who, whether we see them or not, are reading over our shoulders.
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