Thursday, July 19, 2007

How (not) to Support Autistics: A Textbook Case

A new autism blog was brought to my attention. I tried to ignore it, convincing myself this would be the best thing to do. The person who writes it is clearly meaning to be helpful and says that she enjoys working with people on the spectrum. I thought I’d give her a bit more time to get her bearings before leaving a comment. I never got the chance to comment, though, as this blog I’ll call autismadvocacy4dummies no longer accepts comments. This happened shortly after another autistic adult left a comment questioning the author’s statement on the importance of person first language. Here’s what the blogger (I’ll call her HappyGoodWeather) had posted:

"Before you start reading this article I'd like to say that I have a serious problem with people referring to our kids as "autistic children". To me it sounds so derogatory. I prefer "children or people with autism."

A commenter politely offered the information that most autistic adults prefer to be called “Autistic” and included a brief explanation. HappyGoodWeather responded with a new post, thanking the commenter, but reiterating the reasons she felt the term autistic to be demeaning. Shortly thereafter, a post along the lines of “It’s my blog, I’ll say what I want to” appeared. I am not able to offer any quotes from these two posts, because they were taken down the next day, and comments for all posts were disabled.

I wish that Happy had not taken that action. She has every right, of course, to use her blog for one way communication or to hide it from public view if she wants. I don’t dispute that. My problem with this is that she started a conversation, she claimed to value the commenter’s opinion, and then, when she heard some things she didn’t like, she basically told her visitors to shut up. So what I want to say to HappyGoodWeather, I’ll have to say here.

First, about the name of your blog. If you want to call people ignorant, uninformed or something of that nature, be aware that some people, autistic and neurotypical alike, are going to take offense at that. This would be true even if you had an advanced degree or other standard “expert” credentials.

A commenter at your blog also mentioned a problem with the banner illustration. Puzzle pieces, yes, but beyond that even, the statement “Enough is Enough”, however you meant it, has offended some of us. You have made it clear that is not your concern. I would be curious to know if you would take a similar position if an ethnic or religious minority took issue with a statement suggesting they be eliminated.

Another problem is, of course the content of your posts. A couple of examples:

As someone who is immersed in the Autism World, I can tell you that most people categorize having a child diagnosed with Autism as a death.”

“Ever wondered what it's like to live with Autism Everyday? Ever wondered what it's like to listen to your child scream incessantly? Take a look at this video. It will change your view of Autism. It will show you the stories of strong, powerful families who live through this.” (link to the infamous Autism Every Day)

I struggled with myself over writing this. What difference does this one little blog make, why call attention to it? Maybe just because someone directed my attention to it and it made me feel queasy and I haven’t been able to forget. Maybe because there is still a line in one of the posts that says “I look forward to your comments” But probably most because of this:

“My job is working with the children with Autism and the family as a whole. I try help the family make sense of the diagnosis and inquire as to how we could make the situation a little more manageable.”

HappyGoodWeather sees herself as knowledgeable and helpful. She calls herself a “student”, a “therapist in training”, who hopes her blog will “serve as a tool for many people”.

I fear for the children she works with. She says she wants “a better world” for them. Will she also say to them “I look forward to your comments” and then turn away? Or will she listen patiently, if condescendingly, to their concerns, until the day they join the ranks of autistic adults, and therefore need be silenced?

20 comments:

  1. Well said!

    I suppose what bothered me about that site was.....how she managed to take ownership of every negative icon and attitude all at once.

    I cannot ask her because she shut her comments off....so I will put it here. Is therapy something you do FOR the children or TO the children?

    In fact, before she disabled her comments I did ask her some things-like how an established legal standard is going to effect her position. Sure, that has not happened.....yet. However so very many people are being dx'd on the spectrum that it is only a matter of time before Autistic Rights are clearly established. There are a number of suits in the courts now that will probably serve as case law later on in time.....like chelation, service animal access, and IEP implementation.

    I will be interested to see what comes out of that.


    ~Sarah

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  2. Have you checked out her big brother's blog. It seems that unwanted and unthinking "helping" is a family favorite.

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  3. Fear of criticism seems to be endemic on more than a few blogs of late. Thanks for pointing all this out. Sad to say, blogs like hers seems to appear regularly (but not always to last).

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  4. Phillida PhoenixJuly 20, 2007 at 3:18 AM

    In my case there's certainly "No Big Smiles Or Other Warm, Joyful Expressions" at 38 YEARS "or thereafter" for HappyGoodWeather.
    However, a particular "Two Word Meaningful Phrase" comes to mind...

    Amanda has an excellent post called "Do-Gooderism: Links, Articles and Discussion"; I wonder if HGW's blog is worthy of a link in it?

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  5. "As someone who is immersed in the Autism World, I can tell you that most people categorize having a child diagnosed with Autism as a death.”

    I strongly beg to differ. Not once have I felt as though there is a death because my older son and myself are on the spectrum. Yes, he was really upset this morning because his book was a bit wonky and then I put his socks on before his shoes and then his stairgate wouldn't shut and I could have filmed it and used it as a way of showing one side of him. But this is only one side. Because after a while he was cuddling next to me, making my hands play "peekaboo" and shouting "NO CAPTAIN LARGE!" (from a programme called "Button Moon") to absolutely everything that was said to him. He is funny, clever and hasn't an ounce of malice in him.

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  6. I'm out of the loop so I don't know which blog you're referring to but it sounds like something I would read and then start yelling at the computer screen.

    I USED to alternate indescriminately between "my autistic son" and "my son who has autism" until I started reading blogs written by autistic adults. I'm sure I'm still not perfect in how I refer to autistic individuals but I'm trying hard to learn from them. I think it will be interesting in the future to find out what my son prefers.

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    1. Here's my reply: I'm an autistic, when my autism causes me to do great things. I'm a person with autism when I have experienced its shortcomings. ;-D

      Fortunately, at the moment, I feel autistic. lol

      Also, depending on the circles, it can be a matter of pride. It's like wearing jerseys. Sometimes you feel like you're on the winning by team and you're proud to wear the jersey. Other times, especially if you're in the wrong crowd it might be time to duck and cover. xD

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  7. i did not read a lot of the big brother's blog, but i read some of his links. not sure why wanting cubans free of Castro (or other liar/leader that could replace him if they don't get anyone better) is so bad?!?!
    could be like wanting autistics free of ABA and autism speaks, or something...
    (cubans should also be free to make their own way and choose whether or not they want OUTSIDE interference/help, if that doesn't go without saying).

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  8. Ok, found it.

    So basically all she does is quote Autism Speaks and then links to them for more information?

    Absolutely none of that looks like it came from an independant thought process at all. She's a freakin parrot!

    And she sure assumes a lot about autistic familes doesn't she?

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  9. PS1: that woman perseverates on autism speaks something awful.

    PS2: i have made a new blog called autismforregularpeople but i have not written much in it yet.

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  10. I have no idea how to find the blog you are referring to and maybe that's a good thing. I can only hope that this is a young, earnest person who really meant well and just has not seen the bigger picture yet. So many people in the autism community (whatever THAT is) are pretty clueless about the feelings of autistic adults, the implication of the puzzle ribbon, and so on. I hope this new blogger takes a step back, begins to read some new things, and educates herself. I know that my attitude toward my child and towards autism in general has changed dramatically over the past few years and for that I owe a huge debt to people like you, Bev. Keep up the good work. Some of us NT's can be pretty thick but the message gets through eventually.

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  11. Bink,
    That's my impression, "young and earnest", but then how sincere can you be and not accept some feedback from the people you claim to serve? I think in some ways these well meaning types are more dangerous than the openly hateful ones. For example, I almost didn't write this because I kind of felt guilty for critisizing someone who's obviously "just trying to help". Until I realized how condescending that would be. And how it would have allowed this person's "shut up and go away" attitude to have more power than it deserves.

    I didn't use the real name of the blog because I don't want to promote traffic going there, which would eventually rank it higher in the search engine results, causing more people to encounter these ideas as an introduction to autism.

    I really don't think NTs in general are more likely to be "thick" than we are. I think they have different kinds of fears they deal with, and playing into those is not helpful to any of us.

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  12. Sarah,
    Thanks for pointing all this out, and for offering this positive and hopeful perspective on the future of laws pertaining to autism. I hope you are right!

    Kristina,
    Yes, we all have to deal with unpleasant feedback from time to time. I do moderate comments here, but so far have only excluded two comments due to "hate speech" or links to same. I can't say I would never make the choice to reject something I found particularly harsh, but I don't think I'd see the point of putting much time into a blog that wasn't more than a monologue. I do believe freedom of speech comes attached to several responsibilities; for me, listening to others is an equally important part of communication.

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  13. Just discovered your blog in a search for comments on Baron-Cohen's theory of autistic honesty. I like what I see and will be reading regularly.

    As for the blogger under discussion, I had no problem tracking her down. Just Google "As someone who is immersed in the Autism World, I can tell you that most people categorize having a child diagnosed with Autism as a death." That will take you straight to the blog. I was quite impressed (not!) to learn that her favorite source of info is Autism Speaks

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  14. Good that you chose to write this. There is far too much out there that casts a purely dreadful light on autism. As if one cannot function or learn with autism, therefore, when kids DO make progress, the parents call them recovered. What about saying, yeah, I have autism. It makes life challenging, but I can learn and grow, and teach my parents too.
    How can parents see things as so back/white, when they have been shown the spectrum? (sorry... this comment has been colored by me simultaneously watching a "cure" video. They snagged me with the word "hope", silly me, I didn't know the only hope is a cure.)

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  15. Bev -- I think you've done the right thing. I can hope that this blogger's shutting down of comments is just some kind of brief defensive reaction to unexpected criticism. My thought is that maybe she is reading this. I hope that if she is, she is learning to understand some things that may not have been clear to her before. Such as, if she wants to help autistic people, the first step is to understand that they are in fact people, with their own thoughts, feelings, goals, etc. If she does not want to see this then I advise her to find a new career as she is particularly ill-suited to being a therapist. You might have done her a great kindness by bringing this to her attention so early in her professional life.

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  16. Yep, basically it is, "Don't criticize me, I'm good people."

    There's far too much of that among autism support workers and parents.

    It's also very closed minded.

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  17. That reminds me of something that Harry Wormwood said to his daughter Matilda: "I'm smart; you're dumb. I'm big; you're small. I'm right, you're wrong. And there's nothing you can do about it."

    Harry of course, had no interest in understanding or helping his daughter Matilda learn or become anything important to her.

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  18. Bev, I wouldn't necessarily assume that she's either young or earnest. I've had far more to do with social workers and social services than I'd like, thanks to a family member's more obvious problems, but my experience so far is that a great many middle-aged social workers and other therapists see that sort of stonewall business as a show of strength and a determination not to be bullied, abused, walked on. An awful lot of people go into the field after long therapy for problems of their own, and there's a much stronger emphasis on abuse, safe spaces, and feeling good about oneself than there is on, say, reason and openmindedness.

    If you've come out of some abusive situation, and you're not terribly bright but have clawed your way up through your [helping degree], you're determined to brook no more...well, anything that makes you feel bad about yourself, all loosely termed "abuse", and much of your daily sense of self and worth stems from your degree and your ability to say "I help _____ people", well, you're not going to tolerate much in the way of questions. Unless they're questions that begin "O Good and Authoritative Helper, I am a [respectful colleague/grateful client] ; could you please help me?"

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  19. 😂 hahahaha "HappyGoodWeather" hahahaha

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