Wednesday, January 9, 2008

I wanted to tell you this

This post is for anyone who saw the Hub presentation yesterday at USD. Others are welcome to read it, too.
Sometimes people are invited to speak to groups not because they are good speakers, but because they do a good job of expressing themselves in writing. Sometimes this works out well; frequently it doesn’t. It is often the case that these skills, writing and speaking, do not come packaged together, and this is also true for people not on the autism spectrum. For someone like me, though, the transition from written to spoken word can be dangerous, a word I use here not in a metaphorical sense, but in the very real sense of creating false impressions which could ultimately cause very real harm to oneself and/or others. Physical harm, irreversible harm.
There are times I almost forget that I can’t always make my mouth say the things I tell it to. There are cues on the slides I use to remind me of what I mean to say next. Nevertheless, these thoughts might fail to assemble themselves unless written out word for word. This is for anyone who attended the talk at USD yesterday, because these things cannot be left out, and this is the way I have to tell you that I know will work.
First, I need to say how very much I appreciate being invited here as a member of Autism Hub, and how much more I appreciate the work being done at USD’s Autism Institute. I have attended a number of mainstream autism conferences; this is the first one I’ve seen truly dedicated to understanding and supporting autistic people and our differences, rather than discussing how to change us. Thank you for that, Dr. Donnellan and Martha Leary, as well as all others involved.
The idea of supporting people rather than trying to force them into those behaviors the majority can more comfortably tolerate, the correctness of this seems so very self-evident, I often forget what a radical concept it is, how much we are sometimes hated for expressing it. This is what I wanted to tell you:
The video by Kev about the history of Autism Hub was well received. So many of us are indebted to the work he did to start this and nurture it into what it is today. What we didn’t talk about is why Kev wasn’t there with us, why he isn’t writing here on the Hub anymore. Kev’s family was threatened by someone with an agenda. His daughter was mocked, funds were falsely solicited in her name, words denouncing Kev were falsely attributed to her.Kev is not the only person who has been attacked for speaking out about the rights of autistic people. Threats have been made against scientists, researchers, bloggers. Yet there are some who accuse us of "attention seeking." Why would threats and intimidation not be worthy of attention? Why would we not seek to show the dangers of being autistic, of speaking out?
I wanted to tell this small piece of Kev’s story as an illustration of why this work matters so much to me. Far more important though, is the story of Katie McCarron. I didn’t put her name on the slides; I was sure there was no way I’d forget to talk about Katie, and I knew exactly where the story fit, but somehow, knowing I had already exceeded my allotted time, I didn’t manage to say it.
Katie was killed by her mother, Karen McCarron on May 13, 2006. She was three years old. Karen McCarron has said that she wanted to "take the autism out" of her daughter, that she wanted a "life without autism." This was several days after the release of the video Autism Everyday, in which Alison Tepper Singer discussed her thoughts of killing her own autistic child. I'm not saying there is a cause and effect relationship; she may or may not have seen the video. I am just saying what happened because some of you, some who may be new to the Hub, haven't heard it before.
McCarron's trial started Monday, the same day as this conference. For more information on the trial, see Autism Vox. Think this is just horrible, but surely an isolated incident? See more reports of violence against autistic people here.
Does the way we talk about people, the words we use, the layers of meaning behind those words influence the treatment of those groups by others? Possibly?
Discuss. If not here, then somewhere. I'm asking you to consider the possiblity that it does.


  1. I'm sorry I couldn't make it out to your talk. I'm sure it went well. Thanks for the additional statements here, and thanks for making the effort to fly out and present at the conference.

    ...Does the way we talk about people, the words we use, the layers of meaning behind those words influence the treatment of those groups by others? Possibly? ...

    Language is vitally important, and I think that there is NO doubt that it affects how those referred to are treated.

    "Retarded, Retard, He looks like he just got off the short bus, That's so autistic." Hard not to have a visceral reaction to the above.

    Even though the term 'disabled' should be content neutral, I think that sometimes it too has overtones of condescension.


  2. Thank you for speaking for the HUB. I am sure you did very well. I am following the trial by reading Autism Vox. I am learning about proper language and how to best assist my daughter as she gets older. I appreciate reading your blog.

  3. I am so grateful for your blog. I have learned so much from you and the Hub and I know it is helping me to better understand my son. And yes, the language is vastly important. Thank you for continuing to educate me on this and so many other aspects of autism.

    karen in ca

  4. I had alot of difficulty hearing people refer to things that were said to be funny on the Saturday Night Live show.

    Hearing people say that it was a reflective of "our generation" reminded me that I was not at all a part of our generation.

    Of course being overly sensitive to what some label as challenging "political correctness" can cause the pendulum to swing the other way. However, I see a direct correlation in what people were encouraged to laugh at 20 or 30 years ago now causing extreme hatred and rage.

    Words do matter and what the mind accepts as a joke (or anything else that is considered to be just benign conversation) CAN provoke other destructive emotions.

    If it doesn't do that to the person who tells the joke, people need to be responsible for what they say as to how someone who hears it may respond.

    Thanks for your speach. Much appreciated.:)

  5. Bev -
    I just had a V-8 moment! As I was reading, I too realized that I was to mention Katie and her family, to ask the audience to keep her family in their thoughts and prayers. As you know, we ran out of time (there was too much to say!) and were rushed and, jeez, we're not professional presenters but just bloggers!
    Thanks for mentioning Katie. Thanks for coming to the conference.
    I hope you realize that you stole the show, and that you impacted the listeners more than Do'C or I could or did.
    Great job, Bev.

  6. I just came back from the USD conference feeling so pumped up like I had been awakened. It was a real eye opener for me, as a teacher, that my asking for visual eye contact was wrong and disruptive of comprehension. That curtailing flapping or what ever could be damaging instead of helpful. That so much could be going on inside a non verbal person like Amanda, and I had been so clueless - what else have I missed. I never liked labels and like to think that I am open-minded and work with each person from where they are. But to realize that some of my previous goals were not helpful or even disruptive was news to me. I felt ashamed that I had never picked up on some of the information that I learned this week, but happy that some of it was second nature for me also. Such as inclusion and taking care of my staff and myself, as David related was so important.
    I was impressed by you and your happiness with relating to your differences - I am trying to learn the new verbage to discuss differences and am sitting here typing and questioning whether 'differences' is a negative label. I now know I need more direction. I want to be informed.
    But my heart and mind have been opened and I feel renewed and am so very glad I was exposed to you and the other blogger's positive and intellectual experiences. I was so taken with the whole presentation. As well as the 'professional' presentations.
    Thank all of you - and I am so looking forward to learning more from this blog spot - is that correct nomenclature? But I am saddened by the story you have related here.

  7. Bev,
    What a treat to meet you and to hear of your important work blogging. I am tickled to have learned so much in a short time.

    Thank you for posting the information about Katie. I will keep her in my thoughts.

    I feel very strongly that the words we use affect the way people act. I think of this in two ways. One, our descriptions of people and their circumstances reflect our understanding (or lack of understanding) of what people might be experiencing. I often struggle with the tension between being concise, plain-spoken or clear and reflecting the complexity of a person's experience with due respect. Two, I am continually concerned with the way people speak (or do not speak) with autistic people or people with other communication differences. Often it seems that folks must demonstrate typical understanding before other folks will talk to them about the most basic things. I often see/hear more intimate conversation directed to strangers such as store clerks or fellow passengers on a bus than to autistic people who are well known companions. This breaks my heart.

    Again, Bev, thank you, Steve and James for your talk at the USD Autism Institute. You have opened doors to new possibilities for me and others. Martha

  8. Well I might not always have been best friends with the hub but I pointed it out yesterday as an example of the way we (autistics that is) have been using the internet as a force for social change on the RSA blog.

    maybe others would like to add to that.

  9. i had a look at what USD wrote about the conference and it looked very promissing. i'm going to read it another day. congratulations to your success in flying out there and making your presentation.


  10. Hi Bev,

    I'm one of the lucky ones that got to hear you speak at the USD conference. Thanks for spending the time, energy and money to come out to SD. I had never heard of the Autism Hub, although I have read some of the bloggers on their own blog pages.

    My son Jeremy just turned 19, and he types with one finger on a lightwriter or letterboard. He is learning about communicating via email and the internet. The internet is such an advantage for people like Jeremy who may not speak but can type. He can email his buddies if he can't talk to make plans.

    It's true we have to be careful with our language. Yet I hope people look more at the communicator and the intent than whether they say the right thing "A Rose by any other name smells just as sweet". For example the use of 'autistic person' or 'person with autism'. If I don't know the person, I don't want to insult them by using a descriptive they don't like when I am writing. So I generally try to stay with 'on/off the spectrum'. It gets messy as a book author because as an author you don't have final say on the title of your book (unless you are as prolific and skilled as Stephen King). And your book gets edited so you need to really convince your editor about why you are using the language you use.

    A former pathologist accused of suffocating her 3-year-old autistic daughter with a garbage bag alternated between being obsessed with finding a cure for the little girl and wanting to put her up for adoption, the woman’s weeping husband testified Monday.

    “All Karen ever thought about was finding a cure for the autism,” Paul McCarron said during the opening day of Karen McCarron’s murder trial at Tazewell County Circuit Court in Pekin, just southwest of Peoria.

    When he arrived home after Katherine McCarron died, McCarron said he found his wife locked in a bathroom, the Pekin Daily Times and the (Peoria) Journal Star reported. After kicking the door open he found Karen McCarron on the floor with cuts to her wrists and Tylenol pills on the counter.

    Karen McCarron said “I hurt Katie” before she handed over her engagement ring, Paul McCarron told the jury of eight men and four women.

    Re McCarron, murder is wrong. Period. I can't even think about it, it is too upsetting.

    Bev, It was great meeting you. Thanks for all you do to help us non-autistics (I would have said NT but some find that insulting) understand about your personal autistic experience. It helps us understand our kids and others more.

    All the best,

  11. There was a piece I saw somewhere about Karen McCarron that went into details that made it obvious the argument about "lack of support" was just bogus. Like, Karen didn't even have her daughter at home full-time? Anybody remember? Kassiane did a couple of really great entries about Karen's weak-ass "suicide attempt", but I believe there was more that really negated that "lack of support" for overstressed parents argument that you hear all the time. There was another story, too, that I remember reading through a link from Ragged Edge, but that I can't find anymore, about a physically disabled boy whose very well-to-do parents deposited him at some institution every Christmas while they pursued their own interests . . . and something about the institution refusing to take him and the parents suing about . . . something. Sorry; I appear to be degenerating . . .

  12. Go Bev! Anytime I see people come to the Hub and say 'wow, I never knew this place or these people exsisted' I think of how wonderful a resource it is. No, not everyone is prepared to embrace diversity, but for those like Renee, her students will be rewarded by her newfound understanding. thank you.

  13. Steve D,
    Interesting you used the word "stole" there. I felt really bad about you not getting your time. I forget how long it takes for me to say things. I was really glad we had the Q/A session the next day, so you had at least that chance to say more about parenting.

    Thank you so much for the work you did setting this up. Things like this can really make a difference.

  14. Urban Farm,

    Thanks so much for stopping by and saying hello! I hope you will continue commenting on the Hub blogs; we like knowing that people are listening.

    You make an important point here about the reluctance of many people to engage with people on the spectrum. I think a lot of it is fear, both of the unknown in general and of "saying the wrong thing" or something of that nature.

    Of more concern, though, is the not-engaging related to the idea that autistics are somehow sub-human. It is particularly dangerous because many people do not even know they have this thought. We become invisible. Once that happens, abuse is all but inevitable.

    Thank you for the work you do in helping us be seen. It was a pleasure to meet you, too.

  15. Hi Bev -
    Don't read anything into "stole" - I mean it in the traditioanl, colloquial sense of one person having made a big impact on the audience. I mean it in the most positive way.
    I was surprisingly not disappointed that time seemed to compress during our presentation. I have decided that it is because a) I felt the parenting message was the least likely to make an impact and that b)the presentation as a whole came together so well that it lacked nothing.
    You are not a "me-first" person nor an attention seeker, so you will be the first to cede accolades to someone else, but know that you really did make a great impression and, yes, you 'stole the show'. :)


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