I’ve been scrambling for things to write about lately, as you well know, if you have been keeping up with me at all this past year or so. My creativity has been severely blocked by life and all its glorious difficulties. So when I came across a certain post written by an “autism parent” or rather, a parent of an autistic kid, I felt I needed to respond because this post is a bit incorrect. While I guess I can understand why this person came to this conclusion, I think that is more so due to lack of listening to #ActuallyAutistic people, than it actually being how she perceives it.
So first off, if the author ever reads my response, I’d like to point out that I am an autistic adult but also a parent of two autistic kids. A single parent, if that even matters. So with that out of the way, onto the post. (Edit: I can’t link the post, it has been deleted or made private, however I’m keeping this post up because these points need to be made.)
There are just a few points I’d like to make, rebuttals, if you will, on a few things. The overall feel of the article is a bit “doom and gloom”. It starts off with talking about Autism Awareness Month, which is fine, but then goes to say However, there is something rather sinister going on beneath the surface of all this awareness-raising. Which is referring to autistic adults speaking out in online groups against things like Autism $peaks and their light it up blue and puzzle piece and generally pushing for acceptance instead of awareness. But I will explain it more so as we go along. The next thing:
There is a divide within the ‘autism community’ (and I’ll come back to that term in a minute), particularly online, and I think it’s getting wider. There is very much a ‘them and us’ feeling between people like me, a parent of an autistic child, and those who are actually autistic themselves.
You’re just now realizing there is a divide? This divide has always been there. The difference now is that we are in your faces instead of locked in institutions or clumsily going through life without any help or support. I’ve mentioned this divide in the past, last April, in fact. Many other autistic bloggers have mentioned this divide. And we have been trying to figure out the best way to try to bridge this gap between us, but we cannot do it alone. *Some* progress has been made, but I guess you wouldn’t know about it since you aren’t listening to us. Moving on.
Some of those who are #actuallyautistic (they even have their own hashtag) believe that people who are not autistic themselves should not speak for, or advocate for those who are, including their own children. They believe that the only voice that should be heard is that of autistics and they get quite arsey about it.
That part is blatantly wrong. Those of us who are #ActuallyAutistic, the hashtag is a testament to the neurodiversity movement gaining momentum which is fucking awesome, do not want to push parents completely out of the way. What we do want -and yes I realize I’m saying we like I speak for all of us, to be clear, I don’t presume to speak for each and every one of us, but we do have a general consensus on some things, this being one of them- is for autistic people to speak for themselves. Saying we want to be able to have a say in our own advocacy does not mean we are saying for the non autistic people who want to be allies to get out of the way. It’s quite the opposite. While we do feel that autistic people should be at the forefront on this, since it is about us, we also want to educate others in proper advocacy.
The trouble is, for many of our children, we have to be their voice, because they do not have one of their own – literally in many cases. Or, even if they are verbal, they may lack the capacity to voice their own opinions. I am ****’s voice right now, because she’s five and isn’t really able to advocate for herself just yet. However, I don’t write about how she’s feeling, or what she’s thinking as I can’t always know this; I write from my own perspective, that of a parent. As soon as she’s able to voice her own opinions I’ll help her to express these in whichever way she sees fit, be that on a blog, or a vlog, or even not at all if she doesn’t want to.
This I have to say we differ a bit when it comes to parenting. And this might be my literal autistic brain at work here, but I can’t possibly consider myself to be my kids voice. Not really. But I am inclined to believe that non autistic people interpret “being their kid’s voice” as a little different than what I am thinking of. I will point out that I have never, nor have I ever seen another autistic person, told a parent they shouldn’t be their kids voice in the sense of fighting for services with docs, schools, and all the other mess of things we have to do to get the kids the help they need. Now correct me if I’m wrong in assuming that THAT is what you mean by being their voice. My literal brain is also not referring to being my kids voice as to making assumptions about what they are feeling or thinking, no not at all. What I call being someone else’s voice is disclosing the most personal things about them, vulnerable moments, that perhaps they’d be incredibly embarrassed about if they learned that was plastered all over the internet for strangers to read or see. That is the kind of voice I hope no parent ever strives to be.
Some of the autistics that lurk in the comments on facebook pages tend to be intelligent, articulate and, I’m sorry to say, quite nasty.
Some of these autistics do not consider us parents to be a part of the ‘autism community’ unless we actually have autism (which, I’ve noticed, is generally assumed we don’t, but this is not always the case; there are quite a few autistic parents out there). I understand this, to a point. After all, I would not consider myself to be part of the black community as I am clearly not black, so why do I consider myself part of the autism community even though I am neurotypical?
We don’t lurk, we interact. Lurking sounds so… predatory. Stahp with the doom and gloom, please.
Let me explain something. At this point there are two communities. There always have been. One, the “autism community” are the non autistic people, parents, caregivers, and I guess we can even throw the professionals who “work with” autistic people, even though some might put them in their own category of community, but that is beside the point. And two, the Autistic Community. The autistic community is only autistic people. The difference is so obvious here. A parent who is not autistic is not the same thing as someone who is autistic. We have completely different experiences. I say this as someone who is both. (I will be exploring this further in another post, perhaps.)
The thing is, I live autism. My life revolves around autism, every single day, and, most likely, will for as long as I live. Everything I do, I consider the impact on ****, or ****’s impact on it – everywhere we go, everyone we see. I eat, sleep (ha!) and breathe autism. So, although I may not have the condition myself, autism is my life. If I can’t be a part of the ‘autism community’, where do I, and all the other parents, belong?
Yes and no. While a parent or caregiver’s life might revolve around all the decisions to make and plan around and deal with and observe the autistic individual, the parent isn’t exactly living what it’s like to be autistic. I think perhaps a better way to phrase it would be “this autistic individual is my life” rather than autism- because autism is the autistic person’s life, in every conceivable way, not the caregiver or family members. A person is definitely affected by those around them, sure, but everyone has that. Everyone is affected by their family members and whatever conditions they might have, and yet I don’t think I’ve ever seen someone call themselves a “gay parent” unless they, themselves, are gay, or a “transgender parent” unless they themselves are transgender, or an “anxiety parent,” because their child has severe anxiety or whatever other many things a person’s child can be or go through. While yes, a parent is affected in many ways, good or bad is not the point, the parent still isn’t going through it like the child is. These are two completely different worlds for the simple fact that a neurotypical parent will never see it through autistic eyes. It’s perfectly fine for a parent to try to be an ally, in fact, I encourage it, but be aware that there are right and wrong ways to advocate/be an ally. Where do the parents belong? Well you belong right beside your kid, of course, being a proper ally. At the moment, your community IS the “autism community” just be aware that there is a separate community full of autistic people that should be the one’s at the forefront of every autism conversation.
At the end of the day, are we not all trying to do the same thing? Surely we all want to raise awareness of and to promote understanding of autism so that all those who are autistic are accepted in society and life can be just that bit easier for them? So, I don’t understand why some autistics have such a problem with parents like me, who write about our children and our lives. I believe it’s important to share how a neurodiverse family interacts and manages daily life and the number of parents who have contacted me to thank me for being open and honest is testament to that.
To answer the questions, yes and yes. If that is indeed what you are after then yes we want the same things.
But I will say that I do have a problem with the way some “autism parents” write about their children’s lives. Before anything else, I am autistic. I always was. I was a kid once and so when I see parents talking about their kid the first thing that comes to mind is how would I feel if my parents talked about me like that. I’m willing to bet that this is probably how others view it as well, at least, that they think about their own upbringing when reading anything they might perceive as negative when coming from parents. I don’t care if a parent wants to write a blog as long as they are respectful of their child. Now, I’ll admit, Ive never read your blog, I do not know you at all and I’m quite sure you are a loving parent. However, there are some bloggers that I have read that go into very gruesome details about their kids and even post pictures and videos of their child’s most intimate and vulnerable moments. Those are the kinds of blogs I despise, with a passion. Because again, I consider my own meltdowns and vulnerable moments and think about what if my parents did that shit to me? I’d be devastated.
I would imagine most of these autistics – the ones who are on a mission to gag us parents – had parents who supported them as children, who advocated for them, who were their voice until such a time that they could speak for themselves (or hide behind their keyboards, at least). So why do they feel that our children don’t deserve the same? Perhaps it’s because when they were children, the internet wasn’t a thing and people just didn’t share their lives so openly? But times change and this is the way it’s done now.
Those of us who advocate are NOT on a mission to gag parents. Never have been. What we have been trying to do is get parents to listen to autistic people. I actually have written a post about this not that long ago, titled Autism Acceptance: Listen to Autistic people which covers a few of the things I am peeved about when it comes to not being listened to. Your assumption that we all had parents who advocated for us, or supported us, is incorrect. Many of us are so passionate about Autism Acceptance because we never had that while growing up, not even from our families. That is also why we get so aggressive at times, because we CARE SO MUCH. The idea of any other autistic person going through what we had to go through really freaks us out, in fact, I’ve been terrified for many people I’ve never met just by reading some of the things their parents so easily spew on the interwebs, because of how familiar it is. So for the most part, in my case, it isn’t even about me or my kids, it’s about helping anyone who might find themselves in such difficult situations such as mine. My childhood was no picnic.
After stressing that her post isnt about all autistics she closes it with:
I feel really sad that this division exists, as surely we all want a world that is more accepting of autism and those who are on the spectrum? Does it matter that much how we go about it? I’ll write about it my way, you talk about it yours. We all have different experiences to share… after all – different not less.
We are sad about the division as well. And we are working to try to bridge that gap. In fact, we even have groups for allies to learn from autistic adults. It is a first step I think, but it seems to be making progress. So it’s not all about arguing with parents online, but sometimes we have to push a bit to get our voices out there. I’ve known plenty of parents who started out on the opposite end of my advocacy that are close online friends of mine now. So that gap or division can be bridged. It really can, but something has got to give on the side of the parents, we’ve been making strides to try to help you. And while we may not communicate it in the way you prefer, please don’t tone police us. To answer your question, does it matter how we go about it? Yes. It matters. It matters a whole hell of a lot to autistic people. Which makes me want to raise the question, why doesn’t it matter enough to you to find out why it matters so much to us?
So I will close with this. I most certainly do not want to silence parents of autistic kids. The parents should be our best allies. After all, you parents are there in the thick of it with your little ones, putting in a whole hell of a lot of work. All that I ask for is for your ear. Just listen to what we have to say. Our experiences might benefit you, in at least getting you to understand a bit better what it is like to be autistic. Maybe something we learned along the way can help you. But we can’t know that if you wont listen to us. The divide is because of things like “I’ll do it my way, you do it yours.” No, that is not good enough. We have to do this together, do we not? Put the autistic people at the front and listen to what we have to say, then in turn take what you learn and share it with the world, since you, the able bodied person, are sitting in a place of privilege after all, your voice, in today’s society, is more likely to be listened to. That is just how it is right now, but help us change that so that your kid has a better world to live in.
Great stuff! I must confess, I didn’t even try to comment on her blog, as I saw that other autistics responses weren’t being published.
That’s why I didnt even bother commenting and decided to write this instead.
Amazingly expressed Aspergers Dad of Asd child. Even when I had not my diagnosis I felt my parenting approach needed more. Having not had support as a.
a child,left with so much anger being addressed now I finally understand myself and I can help my boy.
Thank you for writing this – spot on!
Once again you’ve written perfection.