Whose Planet Is It Anyway?

Saturday, July 25, 2009

Context and Consequences

In response to a recent guest post in the New York Times "Motherlode" blog, which used language such as "nightmare" to describe raising an autistic child, blogger Sarah of Cat in a Dog's World wrote an e-mail pointing out that such descriptions were hurtful to autistic people reading them. Her reply was published as a separate article on Motherlode and received numerous comments, some of which suggested that the mother who wrote the original guest post should not be criticized for honestly expressing her feelings and that it was natural for a parent to feel stressed by a child's disability. Sarah then wrote an entry on her blog in which she explained that she was not accusing the mother of intentionally trying to harm the child; rather, she was addressing the broader issue of the impact of such words in a culture that frequently represents the existence of autistic people as a burden and tragedy.

Looking at these posts and comments, I was reminded of a news article I read many years ago about five little Korean girls who attempted suicide because they felt unwanted after a younger brother was born into their family. The sisters overheard their father, on many occasions, talking about how glad he was to finally have a son after so many years of having had only daughters. Believing that their father did not value them as they were, the girls concluded that he would be happier if they were dead.

The reporter did not interview the father for the article, but I would guess that he did not in fact have any ill-will toward his daughters and that he was horrified by what happened. He probably never had any idea that his daughters could feel hurt by his words; after all, wasn't it entirely natural for a father to want a son?

And indeed, many parents want children who are like themselves—whether we are talking about a father who longs for a son, a ballet-loving mother who wishes her athletic daughter were more feminine, or a non-autistic parent who would prefer a highly social child. Having such expectations is not at all unusual, and parents often do find it stressful and confusing when a child turns out to be different from what they had anticipated.

In most such cases, the prevailing cultural expectation is that the parents will quickly put aside their feelings of disappointment and accept the child that they actually have. Descriptions of life with a child who differs from one's expectations as a "nightmare," or similar extreme language, would not as a general rule be considered socially acceptable and would not appear in the mainstream media unless the article had to do with learning to appreciate and value a child's differences. The potential for harm would be immediately recognized.

But as Sarah's blog entry discusses, although modern society has recognized as a general rule the importance of understanding and accommodating diversity, the autistic population often does not get the benefit of the rules that apply to everyone else. Numerous articles have described autistic people in derogatory terms that would never make it into print if applied to any other minority group. The excuse usually given for publishing such articles is that parents naturally feel that way.

It's not a very good excuse.

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  • One of the reason's I quit blogging was b/c I couldn't post the realities of living with autism. That I felt like a failure and a horrible parent when the meltdowns and destruction happened but I was to "suck it up" and deal b/c it was my fate. When even the professionals when you called looking for help said they didn't do "social skills programming" but would be happy to come and tell me what I was doing wrong instead.

    How would that make you feel as a parent of a high behavioural child with autism. To be told by adult autistics to sit down and shut up and get over it. To be told by service providers that you're doing it wrong yet there's no help, no treatment, no therapy, no NOTHING to help you with except to be blamed for everything that's going on in your world.

    It's the PARENTS fault, always the PARENTS fault... never the "autistics" fault.. nope just the PARENTS.

    Guess what... it isn't roses and I'm sorry if you or others don't like that. Deal with it. That is the realities of being a parent of a child with autism. NO SUPPORT. No support from the schools, the professionals, the family members and even the ADULT AUTISTICS.... Parent's know nothing... we should just "suck it up and get over it".

    Where's your and other adult autistics compassion for the realities of having a small child diagnosed with autism. Are you so stuck in your own little worlds that you prove you don't have any "theory of mind" to find that compassion.

    The reason you can sit here and rant today is b/c someone like us gave a damn. Gave a damn about your and tried our damnedest to give you the best start we could. Where were your when we lost sleep all those nights dealing with the feeling that we were failing you as we were trying to teach you socially, behaviourally, educationally, speech and language skills, took you places and dealt with the stares and the explanations... You were protected from it all... Protected by us your parents. And where is your "thanks".....

    "Parents should just get over themselves".

    Give me a break.

    You want parents to join your ND movement... it's time you met us in the middle... not blame us for everything.

    B/c on our end it's an uphill battle and a battle we fight most of the time alone. We give a damn... if we didn't.. it wouldn't upset us as much as it does.

    By Blogger farmwifetwo, at 3:57 PM  

  • Farmwifetwo,

    Most, if not all, of us in the neurodiversity movement regard the idea of blaming the parents for everything as absurd. Similarly, we agree that you're under a lot of stress... and that you'll inevitably make mistakes.

    As I've repeatedly observed, it's not like we come with instruction manuals.

    But it's also absurd to regard parents as perfect. Some parents are clearly better than others. Most parents love their children. The fact that this isn't true of all parents is readily apparent -- just read a few of the crime stories that we hear nearly every day on the news.

    It's a sad fact of life that we hear, nearly every day, stories of parents murdering, abusing, or otherwise horrifically mistreating their own children. I'm sorry, but it's true. There's a huge differece between the parent who tries and the parent who doesn't. To your credit, you seem to be the former... you just also seem to dramatically misunderstand what we're saying.

    As for not recieving support from adult autistics, where are you looking? Seriously. Most of us are more than willing to offer support.

    Hell, several of the entries on my own blog are specifically intended to help parents.

    And if you want help finding support beyond the limited help we can offer you online... guess what? We're willing to help you find that, too.

    By Blogger Alexander Cheezem, at 4:54 PM  

  • The autistic community does NOT apply the rules it wants others to apply to itself, to others.

    That's not a criticism, it's a hard fact. Through its spokespeople, it can be arrogant in the extreme, and threatening in the extreme.

    It is losing friends, because some of us realise that as non-autistics, we're not only not wanted, but we're the enemy. Even many on the spectrum are the enemy, unless they tread a hard line and slag off those who have been labelled as 'the enemy'. If you have the 'enemy' label, anything goes. Truth flies out the window. Honesty becomes an unknown. Kindness is thrown back in your face. The issues on which we could collaborate are turned into sad and abusive playground games, in which a person is targetted and abused.

    I work with kids on the spectrum. All of them have been bullied, mercilessly and cruelly. And I'm trying to say that it's OK, because good people, spectrum people, don't hurt others - it's not in their nature. They care about truth and honesty and fairness.

    From what I've witnessed and heard in the last month, I am lying to these kids. I have never witnessed anything more ferocious, callous, misguided and downright bloody nasty as this community's attack on Tony Attwood, particularly the AWA radio blog this week. My autistic/ADHD friend, Debi, was in furious tears.

    Please, please, there are good people here, whatever our place in neurodiversity, surely we want the same thing - just to have someone listen and care?

    This last two months has been the darkest time for me and those NDs I support. It's been a war. And it's been foul and dispiriting for those of us who support the principles. These vile attacks on real people are counter-productive to what matters, ultimately, to the ND community. It can't work like this.

    Just my opinion. :)

    By Blogger Barbara, at 5:01 PM  

  • Nightmare? Depends upon your definition I suppose. It's something that happens whilst you're asleep and is very scary. I think that might be fair enough, especially initially because we're all afraid of things that we don't understand and challenge our belief system and values. After that [although some people skip that bit completely] it's time to wake up, trot up that learning curve as quickly as you can and put of much of it into practice as you can. Everything gets a lot better after that, not so much 'mind set' as 'approach.'

    I think all parents want the best for their children, regardless of their abilities or disabilities, it's a question of finding the best way to do that.

    Learning 'on the job' is not ideal and as farmwifetwo says a lot of us could do with more services to help us do that properly.

    Meanwhile, use of language, at home and in public should be carefully monitored.

    Thank you.

    By Anonymous Maddy, at 5:04 PM  

  • Barbara-I sympathize completely with your view and agree that non-autistics are NOT the enemy, (speaking as someone only diagnoses as an "Aspy" in college,) however, I'm not sure I would consider the blogverses criticism of Tony Attwood "bullying." It's certainly been harsh and perhaps you might think not entirely fair but as a public figure Attwood whether he likes it or not is fair game for scrutiny. Here's the thing the mother who wrote the original post in all probability is no monster and she was just venting some understandable frusteration but everytime a parent does that, I've noticed, you get a lot of comments suggesting that it would have been better had the autistic child never been born and other hateful things. I suspect farmwifetwo that for a lot of people on the spectrum the problem isn't so much with the original "venting" you and others display but with the darker narratives that they can feed. I would never EVER suggest that parents are being deliberately malicious or want anything other than what's best for their kids but the sad fact is these kinds of posts *do* become part of the public record in today's times and that can have far reaching and longterm consequences. You all of course still have the right to express yourselves, (I've donated to the ACLU) and I would defend that right until death and I do have some idea where the parents are coming from but I knew exactly why Sarah was worried enough to do her post...some of the comments that Sarah got made the problem all too clear.

    By Anonymous Winnie, at 5:23 PM  

  • "
    Meanwhile, use of language, at home and in public should be carefully monitored."

    Well said. I've just reviewed Jan W Valle's book, 'What Mothers Say about Special Education', and it made my heart bleed. Four four decades parents have been trying to get a fair deal for their kids, and failing.

    The autistic community can choose to turn their back on these good and loving parents, if you want. Weren't any of your parents good and loving? If not, fairy nuff.

    But most parents of kids on the spectrum are fighting endless battles to enable their children to get by. And these aren't the crazies like John Best, or the depressives like Harold, or the nutters like the Mercury Moms.

    They are good, kind, caring people like Kristina Chew and Morton Ann, and Jen Shrek, and Sharon Fennell, and Jacquie Jackson. They're looking to do their best by their kids.

    They don't deserve to be positioned as enemies.

    By Blogger Barbara, at 5:29 PM  

  • "however, I'm not sure I would consider the blogverses criticism of Tony Attwood "bullying."

    Winnie, lovely post! Did you maybe not see the threats to Dr Attwood on several blogs?

    It was a bit intense. And cruel. And uncalled-for. And very personal. I'll send the links to some of the blogs if you email me.


    By Blogger Barbara, at 5:34 PM  

  • Nobody here is calling parents enemies, Barbara. That's a straw man argument. The fault is with a culture that often gives only negativity to people (parents and autistics both) who need real support.

    By Blogger abfh, at 5:39 PM  

  • Oh, and I have to say that Sarah's blog is one of the rather less than helpful ones.

    I know she has issues. Many of us do - maybe from a different perspective.

    But my mother's autism spectrum condition wasn't responsible for her attempts to drown me, over and over again. It was her additional psychological problems that contributed to that madness.

    We have to get over this name and blame issue.


    ASCs are NOT violent or harmful, in any way.

    By Blogger Barbara, at 5:51 PM  

  • "Nobody here is calling parents enemies, Barbara. That's a straw man argument. The fault is with a culture that often gives only negativity to people (parents and autistics both) who need real support"

    I agree. So why the attacks on real people?

    Let's focus on issues. Personal stuff is not on. And if you haven't done the personal stuff, and want to comment on the issues, fine.

    Sadly, those who've done the nasty personal stuff should NOT attempt to position themselves as clean and clear. That's all I'm saying.

    Nothing about honesty, without honesty.


    By Blogger Barbara, at 5:57 PM  

  • Sarah made three blogs about Tony?

    Was that actually necessary?

    And then she cut off any comment she didn't agree with 'cos.......why?

    Hey! Anyone can give it and give it large.

    A very few can also take it.

    Thanks abfh.


    By Blogger Barbara, at 6:20 PM  

  • Barbara, if you want to ask questions about Sarah's choice of blog topics and/or her policy regarding comments, I suggest that you ask her. I don't have any control over what she chooses to do with her blog.

    By Blogger abfh, at 6:37 PM  

  • Huh? Where have I ever cut off comments I don't agree with on my blog, Barbara? I've only ever deleted comments from one person, that being John Best. I have, however, asked you to refrain from personally insulting me in your comments on my blog, which I think is fair. But I haven't censored anyone other than Best. I have told you that you're welcome to respond to what I say so long as you refrain from the personal insults.

    And as for my choice of topics, if you don't like the blog, don't read it. I felt as though Attwood's interview warranted a lengthy response, which I also used to touch on related issues. I do not think I made him out to be "the enemy" because he is non-autistic. I merely criticized many of the ideas he put forth in a public forum. I do not consider that "bullying." I've experienced bullying before, including cyber-bullying, and my remarks about Attwood don't qualify. I would characterize my remarks about Attwood as criticism of his publicly stated views and professional practices. Not bullying. And I have to say that if you've never witnessed anything as "nasty" as the attacks on Attwood during the past month, you're lucky. If only those criticizing my post which abfh linked to were as polite and refrained as I and ASAN have been!

    Please direct any criticism of my posts at me, on my blog. I'm sorry to abfh that this derailed discussion on her blog.

    By Blogger Sarah, at 7:24 PM  

  • "The reason you can sit here and rant today is b/c someone like us gave a damn. Gave a damn about your and tried our damnedest to give you the best start we could. Where were your when we lost sleep all those nights dealing with the feeling that we were failing you as we were trying to teach you socially, behaviourally, educationally, speech and language skills, took you places and dealt with the stares and the explanations... You were protected from it all... Protected by us your parents. And where is your "thanks"....."

    Being a part of society creates the most power and gives people the most liberties. These liberties are provided to the non-autistics (parents, professionals, support staff etc.)that autistics need support from.

    I don't have family, or schools, programs of any kind, people who have worked in those programs etc. to be grateful to for much of anything. I certainly can't be grateful to them for any achievements I've made because I haven't achieved anything.

    I do have people to be grateful to and I do have a life that is worthwhile and a life that I respect. The people who have earned my gratitude are those who have taught me that the common perception of who I am does not deserve my acceptance.

    They have taught me that I not only have a right to be better than society's misperception of me but I have an obligation to use what I have to be the best I can be.

    I have an obligation to others who are put in some of the same circumstances as me to show them that their unwillingness to accept the popular misperception of them is their right. I have an obligation to them to fight for them to have that right so that others too will see they deserve it and have respect for it.

    More than anyone I know that there are parents that can and do respect their disabled children and don't morn because they have them.

    I have seen how parents can honor their disabled children. That's how I know it's worth fighting for.

    I have met people within public systems who do care for the clients and who do see as I do why the system needs to change.

    It is because (not in spite of) these people that I know that what I believe in is worthy of myself and others fighting for it....and I know that we can make a difference.

    By Blogger Ed, at 9:25 PM  

  • I just have to jump in here..I was appalled by the post in the Times-and many of the comments..All I could think was-do they realize that they are talking about children..human beings..
    I will never deny that raising a child with autism is hard..three of my four children are on the spectrum.
    That being said-I have never been told that it is "my fault"..I HAVE had to work very hard to get the services that my kids need-very hard indeed. That is something that needs to be fixed in the world. It shouldn't be hard to get help, support-answers.
    I chose to be a parent-that is about all the choice you get when you decide to have a child. These are the incredible children that I got.
    Because I am a parent, I do all that I can to help all of my children-that is my job, my responsibility, my privledge.
    Yes, we have been through some very tough times..times where I wasn't sure that I could do it anymore. But if not me than who?
    When I have needed to vent to cry to complain..I found the appropriate venue in which to do it in. The appropriate venue.
    Many of the comments were unfathomable to me. It was like a contest of who had it worse..what does that accomplish? Nothing positive. My children will soon be old enough to be aware of this attitude..What will they think of themselves..burdens..monsters...
    somehow less?
    If my children EVER thank me because it was so difficult at times-than I have failed them.
    Words matter, they have impact. We all ought to be sure that the words we use are ones with meaning and substance. long winded-sorry! :)

    By Blogger kathleen, at 9:38 PM  

  • Barbara, if you think that verbal violence is not the norm for those on the Spectrum - you are wrong. The Internet has given us a voice without physically speaking. Even those of us who can are far more likely to lash out verbally that the generic violence you seem to be insinuated (physical).

    The reality is that a lot of us are sick and tired of being treated like second class citizens. Like ABFH said in the OP - It's not a very good excuse.

    I'll go further and say it's a BS excuse.

    I'm not blaming parents as a whole. Some are idiots (it's why I have the HAP award on my website). I'm certainly not blaming Autism. The blame lies in society and it's refusal to adjust to something they don't understand. That's why there is no support (or it's not adequate). What's the generic reaction to something one doesn't understand? Fear. And what's next if that fear isn't allayed? Hatred - which is what the poor kids see in the school yard.

    ASD Activism (not ND movement - I hate that because it's a misnomer) does not seek to disempower parents. It seeks to empower them. The only ones I try to disempower (and I do - I don't deny that) are the ones who threaten the development of that support base that is so desperately needed. The ones who try to simplify Autism by calling it "mercury poisoning" or "caused by vaccines" (in general) and so on. And the ones who are demanding a cure when there isn't one (a clear sign of hatred). That's why the true definition of Neurodiversity is so important - and it is being undermined by the misnomer being foisted on us (ND movement) and promoting it as a bad thing.

    No form of diversity is a bad thing, as ABFH intimated in the OP. Opposing it is. And the sooner people who oppose it are treated accordingly the better.

    By Anonymous Anonymous, at 9:37 AM  

  • Oh, good lord, girl, Thelma just figured out what abfh stood for! Well, ain't that somethin? That Mr. Mitchell be thinking that Thelma is you in disguise. I ain't got no good reason for him a thinkin' so, but even so.

    Girl, I been reading you the last week or so and find your stuff downright interesting. Listen, girl, that foresam fella and Mr Jonathan, they don't like ya much. I don't reckon they like anybody who ain't in misery with 'em too much, truth be told. Anyhoo, I sure am right pleased to connect your initials with who they been badmouthing.

    Now, I told that Mr. Jonathan that I reckoned if foresam was right about what he said, some such nonsense about folks like him and Mr Jonathan needed to be killed and made into catfood, that I wouldn't be overright fond of the person, but based on it being foresam I was skeptical.

    Girl, if ya wrote that, would ya mind directing me to it; maybe ya just meant foresam. Catfood, though? That ain't hardly fair to cats.

    By Blogger Thelma, at 7:56 PM  

  • Welcome to my blog Thelma, it's good to see you commenting here! You sure can give those dumbasses what-for.

    The cat food joke was from an old rant I posted four years ago. It wasn't about Foresam, or Mitchell either, but some other dumbasses on a forum. And you're right, it wasn't fair to cats. Bad me.

    By Blogger abfh, at 8:52 PM  

  • Thankya, dear. Well, I reckon I'll march my rather ample bohiney on over to that Mr. Jonathan's site and say I can see the resemblance. You do a mighty fine job of calling dumbasses as ya see 'em. I'm in fine company. That's a lovely piece of dumbass outin even if it ain't fair to the cats.

    Ya keep up the good work, dear.

    By Blogger Thelma, at 10:11 PM  

  • "The cat food joke was from an old rant I posted four years ago."

    I've just responded to that...

    and what you said about it not being about Mitchell... well...

    maybe prophetically, it was!

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 3:09 AM  

  • I like Thelma! So where's Louise? *grins*

    By Anonymous Anonymous, at 7:55 AM  

  • @ timelord! Well..I am right here a coverin my buddy Thelmas back! Yes siree..And I have ta say abfh Thelma is right! You call em as ya see em..and well folk like us-we gotta stick together.Yes sir boy howdy! Now Thelma has had a bee in her bonnet about that foreskin fella..I keep tellin her hes just puffed up on his own impotence..never you mind what he says..You just keep writin darlin-me and Thelma we got yer back!.

    By Blogger Louise, at 9:54 AM  

  • You girls rock! Add Mitchell to the list as well....

    By Anonymous Anonymous, at 6:39 PM  

  • Wow there is a whole lot of butthurt here.

    I for one, would love it if there was a middle road for both autists and parents of autists for them to work together.

    But that can only happen if the parents stop painting themselves as victims and screaming at us for "EMPATHY" when they themselves lack it so.

    By Blogger Bard, at 3:12 PM  

  • The lack of empathy comes from the lack of understanding, Night Storm. That's how the morons are able to get into their heads about the vaccine BS and so on.

    By Anonymous Anonymous, at 7:16 PM  

  • Kinda reminds me of the essay I wrote last night on my new blog


    Parents tend to miss the obvious.

    By Blogger Bard, at 10:10 AM  

  • For the most part, I agree with your post, but I feel that there is something you left out. In the West, we have an idea of a "social ideal" and a "social reality." The "social ideal" is the idea that, in a perfect world, x would be true. But in the West, we not only have the idea that "nobody is perfect," but we also have the idea that, because perfection is unattainable, you shouldn't even try to reach it or be near it.

    Thus, we have the social reality. This social reality is how people really act. This social reality is not accepted in polite conversation, but it is acceptable on the level of a personal and familial existence. Straight parents of gay children, Christian parents of Hindu children, professional parents of mechanic children... these all feel similar to neurotypical parents of autistic children. A few accept them, but most do not.

    The difference is that the social ideal allows for parents of autistic children to proclaim how they feel about raising children different from themselves.

    Personally, my parents were wonderful and accepting. I speak from experience that such parenting is possible, so be that kind of parent.

    By Blogger Four Tael, at 5:42 PM  

  • Eight Lo: Although we do have the idea that nobody is perfect, Western society also has an ugly history of eugenics, which asserts that every child ought to be perfect. I once wrote a post about how little sense the latter argument makes.

    By Blogger abfh, at 8:55 PM  

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