I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.
The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.
But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.
I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:
How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease
Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.
So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.
Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.
Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.
As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.
But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.
Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.
Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.
If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.
Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.
It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”
In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.
I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.
I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.
So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.
© 2011 by Rachel Cohen-Rottenberg
I understand, at least somewhat, where you are coming from. My child has been diagnosed autistic, as well as some other things and I am very careful about who I allow her to spend time with for that very reason. But, this problem is not specific to autism. I have had several friends, who had been good parents to their NT kids, that have had children born with various differences. These parents took years to come to terms with their children’s disabilities and during that time would vent horrible feelings right in front of their child and his/her siblings. Things like “I wish she had died”, “I just want to put him in an institution, but hubby won’t let me”, and what bothered me the most, ” Why did so and so’s child die? God should have taken mine.” At least on a website, it is adults defending themselves. These kids grew up with it day in and day out. Yes, parents and NT adults participants should have enough sense to call people on offensive categorization. But it is not a problem unique to either autism or websites. My daughter also has Fetal Alcohol Spectrum Disorder and I find it offensive when pregnant women joke around saying at least they eat right and don’t do drugs. When I call them on it, they get defensive and say “It’s just one beer, wine, drink, or what ever” I am sure this doesn’t change your feelings and nobody who behaves that way would be reading your blog, but there are so many people that lack a genuine respect for life, that sometimes I just feel tired. Incidently, while I don’t advertise it, It is not a secret that I have Asperger’s Syndrome or if you prefer, an ASD
Laurie, I completely agree with everything you’re saying. I don’t at all consider this a problem unique to the Autistic community or to the blog world. In fact, I’m focusing my attention on what happened in one corner of the blog world only because it’s representative of such a pervasive problem in the larger society. Anyone who is different–whether it’s because of race, religion, culture, sexual orientation, disability, or anything else–comes up against this kind of kind of treatment in many, many forms, and far too many people let it go on as though it’s not their problem.
“The outrage of the majority is necessary to the civil rights of the minority. Always.”
Can I quote this on my blog?
Chavisory, I’d be honored.
Rachel, can I post a link to this on twitter? This needs to be read by as many people as possible.
Certainly, bbsmum. Please do!
Rachel,
Here’s one specific example of when moms stood up to another who said her autistic daughter was dead: http://kwomblescountering.blogspot.com/2009/07/countering-aoa-obradovic-article.html
In addition, in my freshman comp 2 class, I use both the originating post that generated a wave of blog posts against the kind of rhetoric and Kathleen’s response post: http://kwomblesengl1302.blogspot.com/2009/12/same-experience-different-perspective.html; this contains Kathleen’s post and the writing prompt for the class.
We are out there.
Kim! Where have you been all my life?
Thank you so much for these links. Like a breath of fresh air! I hope more parents will join you.
Rachel,
I know that when I first started blogging, I connected with this wonderful set of women and men who would and did and continue to speak up about the importance of taking care in how we talk about our children and about autism. There have been several times over the last 22 months I’ve been blogging that there’s been a round robin of posts responding to something particularly egregious at Age of Autism or elsewhere.
I think I can safely say that for most of us who’ve spoken against a rhetoric that damages the dignity and humanity of autistic people, our position has been that our children will one day be grown and a part of the larger autism community and the larger community; we want them to be treated with respect and accepted. That means living our convictions by making sure our community treats family members and individuals on the spectrum with equality. There ought to be room to communicate our pain, our hurt, our struggles, but in such a way that no one is belittled or dismissed. Besides, the reality is that many of us recognize various aspects of ourselves in our children. It doesn’t feel like that big a divide between us.
Kim, perhaps the divide that I’m seeing is between parents who feel a sense of entitlement to a certain kind of child and a certain kind of life, and parents who realize that having a kid is about loving what you have. Unfortunately, I think that entitlement is so common amongst people in our culture that parents like you are still among the minority. That being said, I really appreciate that you are all here!
Kim… that is the first time I have seen that horrific rant about the woman and her daughter Evie. It gave me chills to think of all the tests that poor little girl has endured to be “normal” for her mother. Truth be told, I feel nauseous and so upset for my own son with Autism. I don’t think he needs fixing. That mother does not feel like she deserves her daughter’s Autism… I don’t feel like she deserves her daughter. Thanks for standing up!
Hi, Rachel.
I was just thinking about this and trying without much success to think of something useful to say, because this is clearly such a painful issue for you and for others. I’m pretty new to the blogging community and haven’t come across this very much (maybe because I tend to hide and only peek out when I feel safe), but I’m already starting to understand what a big difference people have in their perceptions of their own or their child’s autism. I hope anything I do say will be taken in the spirit of truly just wanting less pain for everybody and not having any intention of offending anyone.
What is striking to me, as Laurie was saying, is that the children of the parents voicing these kinds of opinions are actually living in that type of negative environment every day. Whether or not they understand the words, the lack of approval and acceptance of who they has to be affecting them. For their own child’s sake, I would like to see these parents find a way to view their child in a more positive light. Whether we realize it or not, we all get a choice every day in what types of thoughts we want to embrace and which ones we want to let go or cast aside, and our feelings flow from our thoughts about a particular situation. Our children deserve the best we have to offer.
At the same time, while this isn’t something I’ve felt much need to do in my life, some people do need some form of negative venting to be able to bring their feelings out into the open in order to heal them. I tend to accomplish this process mostly privately – in my own mind or writing things down that I don’t intend to share, just to get them out of my head. For more socially interactive NT people, maybe they need someplace where they can move through that process with others. I certainly don’t believe everyone is moving toward a more positive outlook. Some people will always live in a dark place and have no aspiration to anything else. For those who are going through a process, I just wonder what would be a safe place for them to express the things eating them up inside to do that without creating more pain for others.
Clearly sharing these thoughts in what you’ve termed an inclusive community doesn’t accomplish that. Are there any communities or forums where they could do that more privately? Since I’m new and not familiar with where all this is happening , I wonder if it would be of any use to post something on the front end of the problem, like a reminder on a community’s page that there are people right there on the spectrum who are part of the community and want to be respected and not subjected to demeaning comments about who they are. People on television-related forums are strongly cautioned against revealing spoilers that might impact someone’s viewing experience of a particular show without warning – so a reminder to please be respectful of community members on the spectrum doesn’t seem like too much to ask. It seems to me like once something has already been said, many people don’t respond well to being corrected, but maybe they’d take it into consideration before they get going in the first place if it popped up every time they arrived at that site. I wonder whether some of the folks making these comments even realize the effect they are having. People have trouble thinking outside their own pain. You clearly have the ability to do that, but then again, you are also a highly evolved individual
I realize I’m not going to fix this problem all by myself, but I hope it’s at a step for me to be able to at least participate in the discussion.
I also want to mention that I see my blog listed here and want to thank you very much for that. You have so much wisdom and insight to share, and I’m just very happy to have met you.
Diane
Hi Diane,
Thank you so much for all your wisdom and insight. I agree with you: I very much understand the need for people to vent, and to get support for what they feel. And I don’t really have anything against people venting on their personal blogs, or in a support group, or in front of a therapist, or with a friend, or in some other appropriate venue. I’m a parent, and I’ve been through a slew of losses, so I get the need to vent, big time.
But the autism community is saturated with the stuff I’m talking about, in the blog world and beyond, and given that the autism community wouldn’t exist without Autistic people, someone (besides us, that is) ought to be asking what the discourse does to our sense of ourselves and our quality of life. A little empathy would go a very long way. And having people raise the bar on what passes for respectful posting and commentary wouldn’t hurt either.
Two of my kids have special needs and I am glad that I have never seen or heard anything like this. Even if they are not thinking about the wider autistic community would these people not think of the effect on their own children if they find these comments when they are older?
Yeah, I’d be worried about things getting back to the children, too, but I think that perhaps there’s a feeling that the children won’t really understand? Or maybe that they’ll totally understand where the parent is coming from and not be bothered? I’m not sure what the thinking is behind it all. When it comes to my own daughter, I’ve always been extremely careful about where and how I vent. Her dad and I are divorced and, like anyone recovering from a divorce, I needed to vent for awhile, but I never did it online, mainly because I’d be worried about it getting back to her.
[...] This post was mentioned on Twitter by AutismSpec Directory, Often called Cathy. Often called Cathy said: “@bbsmum: Read this. http://www.journeyswithautism.com/2011/01/08/autism-parents-its-time-to-stand-up/ This is important. #autism” <it is [...]
You know what? I had like a 1000 word comment typed in and realized that’s actually more of it’s own post. What I really have is a question, but I’m having a hard time phrasing it succinctly.
Are these parents you’re speaking of, stating “when I first got the diagnosis I felt…but now I realize?” Or is it more along the lines of the things Laurie’s talking about?
Hi Laura,
If people were saying, “I once felt…but now I realize,” I would have absolutely no problem at all. I’m all for people describing their processes. I’m also not referring to anything as full-out ugly as what Laurie is talking about. The stuff that’s grieving me is the vast middle ground between them.
For the most part, the people saying these things actually seem like well-intentioned folks who are trapped in the feeling of “Why me?” and all its permutations. I get the loss of ideals and hopes and dreams, because I deal with not having gotten many aspects of the life I once dreamed of every single day. Most people do. It doesn’t mean that I wish I were someone other than who I am, or that I had a different life, or that I weren’t Autistic. I don’t ask “Why me?” After all, why not me? Am I so special that I ought to be spared these difficulties? And once I get that, I can look at what I do have and celebrate it.
You know what I find interesting? It has never occurred to me to be offended. When I read comments like those, I feel badly for them, for what they’re missing out on with their children. But I’ve never equated it back to me or my kids. I don’t know…maybe I just lack the insight.
I’m not saying you’re wrong, mind you, or that you shouldn’t be offended. I respect you far too much for that. I’m just wondering where my righteous indignation is on this one.
I find that I have an instinctive reaction against feeling sorry for the parents for what they’re missing out on with their kids. That’s probably because that response just continues to make the discussion all about the parents’ feelings, and the discussion being all about the parents’ feelings is the very thing I’m reacting against. In these kinds of situations, I feel the need to speak up for the ones who are being talked about (in this case, us) and bring some balance to the situation.
I don’t know if I’m in a unique position being on the Spectrum and also the parent of people on the Spectrum, but I grieved. I felt a sense of loss. Not for the child I thought I was entitled to, but for the life I thought HE was entitled to. Before receiving Coleman’s diagnosis, it never occurred to me that he might not go make is own way in the world. That NOT through his own choosing he wouldn’t find love and have a family (whatever that would look like for him). That was scary and sad for me. Just like it STILL hurts my heart when I realize that my daughter might not ever recognize the faces of her own children. I think that’s sad. And I don’t think my feelings should somehow count less just because I’m the parent. None of this means that I think my children are bad, or defective or whatever, anymore than I would think that of myself.
I didn’t see the comments that prompted this post, so I could be really missing the boat on this, but I’ve been sitting on these feelings for like 2 days, and finally just had to set them down.
(On a personal note, we’ve been disagreeing lately and that makes me nervous, because I still think you’re like the greatest person ever.)
Laura, I do not ever want to give the impression that I think it’s wrong to be sad for the things that one’s children might not have or be able to do. I would never say such a thing, because I’d never think such a thing. Parents are human beings, and as a parent, I’ve cried many, many tears over things my daughter has lost. I have difficulty, though, when these feelings are so totally about the parents’ loss of dreams and not about the children’s struggles, and when these feelings are expressed in ways that create an atmosphere of pity and disrespect rather than strength and dignity. There’s grieving, and then there’s creating an atmosphere in which it’s perfectly okay to demean Autistic people. Grief is not demeaning at all. Grief is just grief. Expressing one’s grief by saying that one’s child’s autism diagnosis is analogous to someone dying of a fatal disease is what’s demeaning.
I’ve never seen you come even remotely close to doing that, and I can’t imagine that you would. You’ve talked about your children’s struggles, your own struggles, and your pain at their difficulties, just as Kim, and K, and JoyMama, and bbsmum, and Big Daddy Autism, and other awake and sensitive parents have done. You’ve all done it with respect for your own pain and for your children’s humanity. That’s very different from grieving because you felt entitled to an easier life and a different child, and it’s different from inviting a slew of comments along the lines of “I know, I know, it’s all so terribly unfair.” Very, very different.
It’s unfortunate that I can’t link to the post that represented the last straw last week. It would give you a much clearer idea of what I’m talking about. But I don’t want all this falling on the person who wrote the post, or on the people who published it, because as well and truly upset with them as I am, they are not even close to the only ones who countenance this stuff.
(On a personal note: I love you too!
)
I was recently told by my husband that he wouldn’t haven’t come within a million miles of me had he known, before we were married, that I had Asperger’s syndrome. Hey, perhaps sympathy is not my strong point, but I did think, you bastard. Of course, he has no chance of ever comprehending my life and, while I believe it is possible to imagine what it is like to be black, or gay, I truly do not believe it is possible for neurotypical-folk to grasp the concept of being autistic. My heart bleeds for him. Heh.
I applaud your stance. I support you. I wish I were NT, and could persuade others; but I can see their eyes glazing over already, because I am speaking.
A powerful post. I shall link to it.
Thank you, Leigh!
Rachel,
As usual, you’re saying very important stuff and I’d so love to agree wholeheartedly with you because in truth, I feel the same way when I read those posts. Unfortunately I can’t.
You see, those parents who say bad things are at the start of their journey. They need to vent, blame, rant and rave.
It’s great to see other parents write in and say that things improve and it’s even better to see other people on the spectrum write in and say how rich their lives are but It’s not great to see people telling those parents to simply shut up and accept the facts. These things take time – and for some parents, it takes longer than others.
We can’t force those parents to change. That would be like censorship. They have to change on their own.
It’s offensive. Truly it is – but at the same time, we still have a choice to not read. That’s one of the big problems with political correctness today.
I’d rather those parents complain (and have other parents empathize, sympathize and reassure) than have them told to shut up and suffer in silence. Surely an opinion which can slowly be changed is better than one which is suppressed and unchanging.
Instead of being gatekeepers, we have to be lights in the darkness.
Hi Gavin,
I am absolutely not saying that parents should just shut up and deal with it. I’m saying that they should choose when, where, and how they deal with it. There’s a world of difference. I’ve spent far too many years in front of therapists working through just about every feeling I’ve ever had to tell anyone to just go and stuff it.
But there are two words in “autism community.” People have the autism part down cold, but how about the community? How can Autistics feel safe in the autism community when places that seem to invite our participation are actually venues for people to vent in our presence? How can we participate in those discussions? No self-respecting Autistic is going to hang around to listen to this stuff endlessly. I’ve spent more time than most, and I’m exhausted. So yes, I’m going to stop reading these sites, and I’m going to stop commenting on them. And for me, that’s a significant loss, because it means that I’ve been cut off from contributing to the larger discussion in ways that I feel very passionately about.
It may not look like it at first glance, but getting no response when I post my concerns on these sites, or being told that my contributions are valuable but that there’s no reason to actually address them, is basically telling me to shut up and deal with it. It’s telling me politely, but the outcome is the same, because it’s a failure to create the kind of space we need to actually be part of the discussion.
Yes Gavin, I really agree, we need to be mindful of where people are in their journey. Shock, confusion, guilt and fear can lead to hyperbolic emotional statements that parents may later feel ashamed of.
I also think it’s a dangerous internet site that promotes those negative feelings without optimism to counter that initial perspective. Misery loves company and I suspect some people become stuck in their grief, and do not seek to move beyond. Those parents probably need a verbal ‘kick up the butt’ to remind them that their children have hearts, minds and feelings, and quite often incredible abilities. I am new to the ASD community via my beautiful 2 year old son. And despite my fears and anxieties, and the struggles of managing such a rambunctious child, I am in awe of him also. I am fascinated by how he views the world. I am not losing him, I am gaining a broader understanding of the human perspective via mothering him.
Thankyou Rachel for your thought provoking perspective. I have just blogged about this issue recently myself, and you have given me much to consider.
Thanks, Sharon, and welcome to the community!
Rachel
Thanks for this post. You make lots of good points, and gave me many opportunities for reflection.
I love reading your blog, and the writing of other adults on the spectrum, because it has shaped the way I write about autism. Many times I have looked back over a post and thought about how it might be interpreted (or misinterpreted) by an autistic adult, and then changed my wording or added an explanation. It’s made me think carefully about what I write and what I say, and it’s made me a better parent to my son.
It’s also made me pay attention to comment threads like the one you describe. Almost every day I read a comment somewhere that makes me cringe. Sometimes I respond [more often on my own blog than on someone else's], and sometimes I don’t. I have more than once thought, “I know Rachel will have something right on target to say to that,” and then waited to read your response. You have just made me think about why waiting to read what you have to say and then cheering along at home is not good enough.
I think a big reason I have held back in some of these situations is that I am wary of appearing to speak on behalf of autistic people. When I hear something offensive, I feel uncomfortable saying “many autistic people are hurt by _____,” because it seems presumptuous and condescending to speak on someone else’s behalf — especially when one of the most pervasive and damaging myths about autism is that autistic people are unable to speak for themselves. This is why (I now realize) I felt like I needed to ask you to weigh in on a comment thread on my blog recently—I felt like my own response lacked weight or credibility because I am not on the spectrum myself.
But your point, which is well taken, is that speaking out against offensive language is not an implication that people on the spectrum are unable to defend themselves. And it’s not even an just an act of solidarity, although that would be reason enough to do it. I don’t need to say “many autistic people are offended by _____”; I need to say that it offends ME, and why. This is not standing up for you or for anybody else — it’s standing up for myself, my son, and for basic human dignity.
This post hits home for me right now, because in the last few days I’ve been involved in some comment threads on the recent autism/vaccine news. On some of these threads, I’ve felt very isolated and vulnerable, as the (always anonymous) comments grow increasingly ugly and personal, and I’ve wished someone would step in to defend me. Not me, personally, but my point of view [in this case, that vaccines don't cause autism, and that I feel personally offended by the implication that polio and diphtheria are preferable to autism]. I know there are many other people out there who share this point of view, but being the only one speaking out for it [in a forum hosted in my home city where I'm using my real name, although most other commenters do not] really gives me a taste of what you mean when you say a forum feels “unsafe.” It reinforces the importance of speaking up when (1) I hear something that offends me, and (2) when I hear someone else express an unpopular or minority opinion that I agree with — even if it’s just to say “me too.”
Sorry for the way-too-long comment… but you gave me a lot to think about!
Sarah,
As always, you have such thoughtful and nuanced things to say. And, please be assured, you do not need to apologize for a long comment on my blog.
What you are saying about being offended on your own behalf is absolutely right, and I hope that lots of people read it and take it to heart. A number of years ago, I came to the same conclusion after an incident at a place I worked. There was a video that the employees had to watch, and it featured some very racist stuff. At the time, there were two African-American employees who worked in the office, and they both saw it. After the video, I went over to their offices and expressed my complete outrage over what had just happened. I wanted to raise holy hell with the people in charge, but I felt as you did: What right did I have to protest? Wasn’t it condescending of a white woman to be speaking on behalf of two African-American men? I talked it over with a friend, who said, “You’re not just outraged on their behalf. You’re outraged on your own behalf. And that’s enough of a reason to act.” It was the best advice I ever got. And yes, I did speak up.
hi i have autism an learing disiblitys i try reading your blog it alot i cant write or read like that i got some of it /.buit your way closer to nt land them most of my friends .i struggle with alot of social stuff an need scripts to get by so i dont sound dumb or insentived an i struggle with theroy of mind i have a haerd time understand all that stuff .im an artist now an do gust gust speaking to parent an teacher on how an what help me out ofg the darkenness of autism to become a hf persons though im not cklose to nt think i can poass sometime witch is more then before but there are alot of parent on these site who get mad when we voice are oppion like we have none maybe they dont want to nio how there kids feel /.it really there loss
Stephanie, you’re absolutely right: It really is their loss.
Stephanie, I also think you’re correct that some people just don’t want to think about what their kids think or feel.
Rachel,
I am so happy to have been directed to your blog for this post today. It is a refreshing change from all of the conspiracy theories compounded this week by the news. My dear son, Xander, and I thank you for your insightful words on the issue of negativity among parents with children/adults with Autism. He says he has “awesome-ism” and his mama agrees. Keep standing up..we’re on your team.
Angela
Thank you, Angela and Xander! I’m proud to be on the same team with you.
I was not diagnosed until I was an adult, but my parents always knew I was special. My mother, especially, has been my biggest advocate. She fought for my rights at school, making sure I was mainstreamed and not shunted into (then primitive) special ed classes. She brought me to therapy, where they worked on my phobias and socialization issues (even in the absence of a diagnosis). And she eventually became an expert in child psychology herself, with a PhD in the field. Parents can make all the difference.
BTW: I just read the entry on Sarah. It was very moving. May her memory serve as a blessing.
John, your mother sounds awesome. You’ve definitely done her proud!
Thanks. As always, you’re so kind.
There is a paragraph in Michael Carley’s book where he talks about being on an elevator with a co-worker to whom he reveals his son’s Aspergers diagnosis. Suddenly the co-worker is looking at him and saying, “Isn’t that hereditary?” Michael downplays the genetic link and then walks off the elevator feeling as though he has stabbed his own child in the back. How many of these parents are denying their children in an effort to escape what they themselves have been running from their whole lives. It’s not like when you hear a pyschologist who treats autistic children saying, “Your chilld doesn’t have Aspergers, because children with Aspergers don’t even care!” I say, have compassion for the parents, and set the medical profession straight so that they’re not propagating the myths they’re supposed to be dispelling.
Liz, I do have compassion for the parents, whatever it is that’s driving them. They are clearly suffering, even if their suffering derives from the idea that one has a right to expect a certain kind of child, which seems to me completely at odds with the leap of faith it takes to bring a child into the world altogether. So, even if I think that people are being wrong-headed, they’re still suffering, and I’m sensitive to it. When I go on these sites, I twist myself into pretzels acknowledging how people are feeling, and I’m painfully diplomatic about expressing my own concerns.
In the proper context, I have no problem with people venting, expressing how pissed off they are that things didn’t go as planned, mourning that their children aren’t just like everyone else’s, and whatever else is in their minds and hearts. All God’s children got issues, and I may not like these issues, but they’re there, and they have to get worked out. The problem is context, and how people can work out their issues in a way that doesn’t demean us. We get to be here, too.
thank you for writinq this. thank you for qivinq voice to thinqs.
And let me speak up and let you know I know MANY people who openly speak up aqainst those sayinq neqative thinqs about a childs dx w/ asd. I am one of those. I refuse to surround myself with people who act that way and I refuse to tolerate people talkinq that way.
I only hope that by the time my son is old enouqh to understand that there will be acceptance and understandinq so it is not so difficult for him. So thank you for sharinq this and speakinq up. From me and for my son. <3
Thank you, M! More power to you.
As always I find your columns insightful, provocative, and well written. As a mother of a beloved autistic daughter I find todays blog a “call to arms”.I would also like permission to share your blog with my BSN nursing students. I am lecturing this week on advocacy and this would make a great discussion.
Judy, as long as you provide attribution, you can always feel free to share my work. I hope it leads to a good discussion for everyone.
I wonder if the reason you feel unsupported in such site is that the sort of parents who would support you don’t participate in such forums? Personally, I know I have limited time at the computer so I choose how to use it carefully, by visiting sites that I know will teach me, encourage me, and help me stay positive. This doesn’t help the bad experiences you’ve had, for which I’m truly sorry, but it may partly explain why you weren’t as supported as you should have been. I’m really sorry.
bbsmum, you make a very good point. I’d say that’s definitely the case, especially given the fact that several parents have posted here and said, “I can’t stand this stuff, either.” It pretty much reinforces what I’d been feeling when I wrote the post—that I have to stick very close to parent and Autist blogs in which people seem want to hear from one another and truly listen to one another. It saddens me that the divide out there between parents and Autists is so deep and wide, but there are some really awesome parent and Autist blogs, away from all the noise, and I need to focus on those.
While I use the blog world as a way to connect with people of like mind, I have other responsibilities and limited stores of energy, so I need to concentrate on the people who add to my stores of energy rather than deplete them. Thanks for the reminder!
This post raises a very good point and highlights a problem with society that is not just limited to autism. The world puts a tremendous amount of social pressure on people to conform. Such that when someone is diagnosed with a life long condition like autism, they see it as the end of the world.
This is something which cannot be solved by preventing people from venting in public. Society as a whole needs to stop seeing autism as a defect.
Robert, I agree that you can’t solve the entire problem by keeping people from venting in public. However, by telling them that they can’t just vent anywhere and everywhere, especiallly in a forum that is supposed to be a place for everyone in the community, you serve notice that living in community means having some degree of discipline and sensitivity about how, where, and when you say things. If people want to vent on personal blogs and in private settings, well away from their children and any other Autistics who might feel demeaned by their venting, fine. There’s a time and a place for everything.
I’m sure the irony isn’t lost on anyone here that I’m basically asking these parents to have a few basic social skills, like thinking about the impact on other people, before they open their mouths in a public forum.
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Mom, this so SO powerful. I’ve been struggling to put into words why viewing autism like this is wrong but then you wrote this and it’s so articulate and moving…I just want to print this out so I’ll be able to direct everyone to it when I struggle to express myself on this issue. Anyway I’m posting it on my school blog here: http://lutraphobia.wordpress.com/2011/01/09/autism-parents-it%E2%80%99s-time-to-stand-up-with-us/
Love you!
Ash, that’s so awesome. I love you, too!
Hi Rachel, I followed you here from K’s blog
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What an insightful post! I stopped visiting the sites where I found a lot of negativity a long time ago, and ended up starting my own blog where I can share a positive view on autism and celebrate my boys for who they are. I do share some of the challenges too but that is part of life and I wouldn’t change our lives. In the process I have found many others who share that positive perspective (K is one, I absolutely love her!).
When I do come across the hurtful sort of comments you mentioned, I can’t help but think how that must impact that person’s child… heartbreaking
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Hi Danette,
Thanks so much for your support. And I love K, too! She’s a gem, and I love reading her posts!
Hi Rachel-firstly thanks for the lovely comment on my blog. I see that Kim has already commented here. We parents do exist!!
You do make very good points. I have only really been a part of the “online” parent community for a little over two years. I oft times find myself astounded over what people will say about their children. I just think “These are your kids!!! HOW can you say such things??!!” Yes, I understand the hardships of raising a child with disabilities-so I understand venting-feeling lost..or scared. BUT, I think when speaking/writing about your kids one MUST do so with dignity and respect. Sometimes I think people get swept away by the word “autism” and forget that they are talking about human beings.
I tend to stay off of the forums that do this..Another thing to remember-on some of the less positive sites-comment moderation keeps the more positive things from being posted. Sometimes I find THAT equally as horrifying.
Hi Kathleen,
So great to see you here! I’d completely forgotten that some sites keep positive comments from appearing. Yikes. And I think you’re right: people often get so overwhelmed by the word “autism” that they forget that we’re human beings with all the same feelings as anyone else. Forgetting that very basic (and to me, obvious) fact makes it much more likely that someone will add to the general level of fear and loathing associated with the word “autism” by saying something destructive.
And round and round it goes.
I just got a link to this post from a friend. She put it in a comment to my latest post on my blog, where I talk about why I changed my tag line. I thank you for writing this. It is more than “valuable,” it is truth. I also post about the positives of autism. I’d love to know what you think.
Elizabeth, I love your post! In fact, it’s exactly the kind of post I value most, because you talk about where you started and how far you’ve come. In so many posts about Autistic kids, it’s all about where the *kids* started and how far they’ve come–which is great, don’t get me wrong–but sometimes, I think that the parents are lagging far behind. Autism parents have to adjust to the culture of their children, just as we Autists have to adjust to the culture of typical people. It’s awesome to see parents who get that.
I’m late to the comments here — but wanted to let you know how honored I feel to be in your blogroll (and the shout-out in your earlier comment).
Like Danette, I’ve gravitated away from negativity-laced blogs. Your post reminds me, though, that I need to look for ways to speak up when I see that kind of pile-up happening on any of the blogs I continue to follow. Thank you.
JoyMama,
Thank *you* for being such an awesome mom and outstanding supporter of your beautiful daughter–and, by extension, all of us. Sometimes, as parents, we think that our impact on the world is minimal, because we’re so engaged with the little ones, and we wonder when we’ll get to make a “difference” in the larger world. But here’s an opportunity to celebrate that being a great parent really does have a tremendous, positive impact on many other people.
I have been vaguely aware of this debate for years, now. When I was first clued in that my daughter had a severe speech delay but no trouble hearing, I did a Google search of her “symptoms” and came across various descriptions of autism. At the time, I had absolutely no idea what it meant or what it was, but some of the first websites I came across made up an interesting dialogue, mostly with concerned & grieving parents writing essays demanding research for a cure, and adults with autism (who often had suffered tremendously as children themselves) who were countering these essays with a call for acceptance and neurodiversity. While all the medical textbooks I’d been given by professionals prepared me for “the grieving process” and to “accept the loss,” I never really identified with those feelings — partially because I was extremely young (I had my daughter when I was twenty years old) and had very little in the way of pre-existing ideas about how life “should” be, and partially because I’d been exposed to the writings of autistic adults who were demanding acceptance for being who they were. I’d always viewed A. through that particular “lens” and have worked to be an accepting, loving, and nurturing parent — “working” being the operative word, of course, because it does take a lot of work sometimes!
I appreciate you posting this entry, because I hadn’t considered the fact that this really is an activist issue. Whenever I would read postings like this, I’d always seen it from a parent’s perspective, and I would chalk it up to a difference in parenting opinion. Considering that I in no way consider myself an expert on the subject of parenting (even eleven years into the process, I still feel like I’m stumbling through it most of the time!) I’ve usually adopted a “live-and-let-live” method of dealing with those differences. However, I hadn’t considered how it will feel when my daughter comes across comments like that when she’s older, how she’ll interpret that, and how attacked she will feel about the idea that autism is something akin to a child dying. (Right now, she celebrates her autism, often claiming to be “the most unique girl in the whole world.” I definitely do everything I can to encourage self-confidence in a similar fashion!)
At any rate, this gives me a way to tactfully approach these sorts of conversations when I do come across them, as well as underscores the importance of people like me becoming part of this conversation. I can’t thank you enough for bringing this to my attention.
As always, love and peace to you & yours.
Devon,
Many heartfelt thanks for all your kind and sensitive words. I think that much of the problem these days is that people have lost sight of the awesome power of words, for good and ill. They forget that words can have great impact, especially on children, who are so open to the world, and especially on autistic children, who have even less shielding than most children. Thank you for lending your voice to this issue.
I’m really glad I saw this post. As a parent of a boy with asperger’s, and a blogger, it really gives me new perspective. I’ve blogged about getting the initial diagnosis, and how sad and devastating it was. Not because I think of my child as “broken,” but because, like any parent, my wish is for my son to be happy and healthy. My fear was of a lifetime of therapies, and skills trainings, and needs for support. I fear he won’t have the joy and freedom of independence. But it’s never revealed in front of him, and I’m slowly letting the fear go, because I can’t control what will happen. But I do know that my son is not something to be fixed, he is someone to be taught: taught skills he doesn’t have; coping strategies he doesn’t posess; and the perserverance to work harder than others so he can achieve. Thanks again for the point-of-view.
Not to worry, Flannery: He will grow and learn, especially with you to guide him.
in tears
off to repost in facebook
Thank you, K! (((((((hugs))))))))
I’d love you to come read some of my thoughts of have a child with ASD. I find him to be an amazing child, with incredible thoughts and a marvelous perspective on life. My blog details some of my experiences with my dear son. I’d be honored if you would come read!
http://www.itsawetism.blogspot.com
Hi Donna,
Great blog! Given its name, you might be interested in the following post: http://www.journeyswithautism.com/2009/12/20/if-i-could-rewrite-the-dsm-iv-criteria-for-autism/.
Enjoy!
its one of my favorite posts of yours Rachel !!
Rachel,
I am so glad I came across your blog. I am the mother of a son who has autism and ADHD. I must admit, I avoid blogs related to autism as it angers me the comments by the type of parent you describe. I just can’t identify with them at all. To my husband and I, our son’s autism is a part of who he is, like having green eyes and blond hair. He is not a “tragedy” by any means (and I am infuriated when that word is used to describe someone with autism). I have a smart, fun, happy kid who looks at things differently. Of course there will be good times and bad times in his life LIKE ANYONE ELSE. When he was first diagnosed, we were worried, my husband was really upset, mainly because of how autism is portrayed in society. Once we started delving in a wide array of articles and books, we realized it was not devastating, in fact, it helped us understand our son and helped us tremendously in our relationship with him. I guess the key though is we had a great psychiatrist that diagnosed him. He told us that this was not going to hold him back. We also read articles and books written by people with autism. I can’t imagine any other way to understand and empathize with someone who has autism than hear it straight from them. I also think it is extremely important to talk about it with our son and not refer to autism in any kind of negative light or that it is something to hide. I think too many people do that to their children and their self-esteem takes a direct hit. Why should they try anything in life when the bar is set so low for them? Mind you, I don’t have expectations for my son’s future, but I would not have expectations if he did not have autism. I just want him to be happy and let him know he can do anything he sets his mind to. He should do what he loves and do it the best he can.
I think education is a great way to start. Whenever I run across a good article or story relating to autism, I actually post it on my facebook page and email it to my friends and family. I think there has been a bad PR job done on the diagnosis of autism.
And to add…. I watched my mother die of cancer and cancer is MUCH WORSE than a diagnosis of autism can ever be.
Thanks for sharing your journey with us Rachel.
Hi Lisa,
Welcome! So glad you found my blog. I love what you have to say about your son; he will grow up to have a healthy sense of himself because of the way you talk about him.
Feel free to look around here, and please comment when you feel the spirit move.
I so love that so many parents of autistic children have commented here, on how they don’t see their children as ‘tragedies’. That is encouraging, that there are so many, it will lift me up when i encounter the other, negative viewpoints. Thanks everybody, from an adult on the spectrum! It’s nice to know that at least some of the next generation won’t grow up wounded to the core by knowing their parents would sooner they were dead, or anything, rather than autistic.
I have autism I also have four children on the spectrum,i have a son with severe epilepsy and another with multiple personality disorder.
I am proud to be who I am and even more proud of all my 6 children.
Racheal that is a GREAT article and is very true accept I have had different experience than you have in that me and I have seen other parents stand up to the people who speak badly, negatively about autism. I accually won’t be a member of a group if I see any of that going on I will say something gently and then leave the grp.if I feel it is going on too much.
This is terrific stuff! My son is in the process of being diagnosed (not that there’s much doubt but I like things stamped and official) and it’s brought up the genetic link and my own childhood and current tendencies and now I am going to get myself evaluated. Autism is not new to me, though; I’ve had friends on the spectrum my whole life. I’ve always related better to Autists than NTs… gee, I wonder why?
This post was relevant though because I have, in digging into websites in search of support and ideas for myself and my definitely NT husband, stumbled on a lot of this sort of talk. It blindsided me, really. My son is who he’s always been; why would I grieve for his loss? I am frustrated by the world he will grow up in that will not understand him, and some people will grieve, but why the blind acceptance that this will be so, that I must be devastated? I love him just the way he is, the way he can get affection without any demand for taxing interaction, his fascination with music, the little world he seems to live in that seems very interesting; I hope I can find out what it’s like someday.
What really struck me was places like About.com where the parenting section just ASSUMED that a parent would be grieving. That’s what hit home–that this is simply the accepted way of doing things, to see autism as this horrendous diagnosis.
Anyhow, I’ve linked your post from a Facebook rant and your quote about “the outrage of the majority” is now enshrined in my trifecta of quotes to live by with the likes of Carl Sagan and Henry David Thoreau. You’ve captured beautifully things I’ve spent months trying to figure out how to say. Kudos! And I have bookmarked your blog and will spend more time digging around.
Thank you, Arielle. And welcome!