Over the past couple of months, I’ve noticed many complaints from adults with autism that they are tired of non-autistics speaking for them. The fact that I’ve only recently really noticed these complaints doesn’t mean the complaints haven’t been around longer than that, nor does it mean that the complaints aren’t valid. There are many cases of non-autistics trying to say what they think is best for autistics. (I don’t think I need to go into specifics.)
However, this is a distinct problem from something that has come up more recently: complaints about the media choosing to interview non-autistics instead of autistics when producing stories about autism. The most recent example of this is the reaction to Kristina Chew’s interview with Newsweek on the subject of parent’s reactions to “political pandering” to parents of disabled children.
Now I don’t know how Newsweek chose Kristina for the interview, but I have the feeling it had a lot to do with the fact that she blogs about her experiences parenting an autistic child. Not only does she blog, she blogs extensively, prolifically, and very eloquently. In short, the interviewer already had a pretty good idea of what Kristina would say in response to certain questions, and in those cases where she didn’t she had a pretty high level of confidence that Kristina would come through. Reporters are like anyone else: if there is an “easy” way to do their job and a “hard” way, they will choose the easy way.
If you would like for reporters to seek out your opinion on something you care about, the trick is to make them see you as a way to make their job easy. Blogs are a great tool to achieve this. If you want to get your word out about being the parent of an autistic child, write about being the parent of an autistic child. If you want to get your word out about being the autistic parent of an autistic child, write about being the autistic parent of an autistic child. If you want to get your word out about life as an autistic adult, write about your life as an autistic adult.
It’s as easy as that.
no straight lines 
Where is the complaint where someone claims that they themself would want to be interviewed for the Newsweek article rather than Kristina?
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What a good thing that CBC The National didn’t go for easy.
Here, have a link and enjoy:
http://www.cbc.ca/national/blog/special_feature/positively_autistic/positively_autistic.html
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@Ed:
I’m not aware of any individuals wanting to be interviewed themselves, and didn’t mean this to be directed at any single individual.
Comments to the post on Whose Planet about Kristina’s interview, in which several people asked whether or not Kristina suggested interviewing an autistic adult or an autistic parent of autistic children, were what tipped the idea into a blog post (as opposed to just a thought).
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@alyric,
Thanks for the link to the Positively Autistic video. Excellent piece of work by the CBC.
What I think is most important about the story is that they had an interest in telling the story from an autistic perspective, with a parent’s views being the supporting role. That was the hard part in selling the story to the editors, I imagine.
In terms of the people they focused on, the producer of the piece did indeed take the “easy” way; each of the people spotlighted is in some way a well known person in the autism community because of their writings or their public activities.
I guess the real lesson is this: we need to get the media, and the general public, interested in understanding the issues from the perspective of autistics. That’s the hard part. There are plenty of people for them to talk to once they are ready to hear the stories.
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I’d also note that it’s important to learn to write well. There are lots of resources you can use to learn (reading a lot is probably the most important one); but take advantage of them.
I think there are ways to increase the visibility of your blog; but so far, beyond signing up for the Hub, I haven’t used any of them. Maybe someone who’s interested in that sort of thing could research it and put up some pointers…
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“I guess the real lesson is this: we need to get the media, and the general public, interested in understanding the issues from the perspective of autistics. That’s the hard part. There are plenty of people for them to talk to once they are ready to hear the stories.”
What you said there is good advocacy talk. That article was made easier by there being well known autistics (which is who your post was directed to) in the autism community that were available.
One of the tricks also is to deal this other distinct problem that you refer to is to either encourage the prolification and eloquence in autistic people you see as being required to get noticed or encourage the noticers to see what autistic people have to offer and would be more likely to provide if such unnecessary standards weren’t set in ways that only people with these qualities were noticed readily or easily.
The thing is that there aren’t enough autistics who are well known partially because often when we speak up for our rights (as I saw people doing in the thread you referred to) there is usually someone that will call that just complaining about something rather than working hard enough to achieve it. That discourages rather than encourages people.
When people (especially those who describe themselves as our allies)display that attitude toward us, it gives people who have likely dealt with a lot of disincentives and negative belittling and bullying disguised as encentives to do better, to feel less comfortable about expressing ourselves.
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Brett, I assume, and this is just an assumption, but I assume that when my youtube channel was active, I probably had more than 5 times the daily views that Kristina has on her blog. I routinely had 10,000 visits a day and more than 100 comments a day. During my most active phase, there were more than 300,000 google search results (links, copies, discussions etc.) to my videos. I can’t count the hundreds of hard copy requests I received from autism service providers, universities, students, even a hollywood producer of films you would be familiar with if I told you the film names. I had one press inquiry, which wasn’t unique to me I found out because many people I know received the same press inquiry. Not one unique one. So, its not about exposure. One of the main reasons I left youtube was because I was beginning to get recognized by people in grocery stores and on the playgrounds. Ms. Chew knows of a lot of adult autistics, yet I’m not aware of any, though there may be some, that she has consulted with in regards to issues of adult autism and important issues for adult autistics. I rarely see her comment on adult autistic’s blogs, though I have seen her comment on non-autistic blogs and in a very thoughtful way. When she comments on an autistics blog, its usually just a very cursory response, very insincere, and frankly insulting to me. I’m sure I’ve missed some comments that could refute what I just wrote but I’m just giving my general impression.
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Brett, by the way, its ok to mention my name in your post. I don’t mind if someone disagrees with me, even publicly disagrees with me and calls me out by name. You can be sure that I will do the same when I disagree with someone. To me this is the only honest way to communicate. My ego is not so fragile that it needs to be protected and others might want to know who it is your talking about because it couldn’t be anyone but me based on your link and what I wrote on a list we both belong to.
As far as the argument about non-autistics representing autistics, I’d refer you back to Phil Swartz essay which I linked for you on Joel’s blog about good allies. You seemed to like it. Ms. Chew is not being a good ally in my opinion when she does these things if she has the means to affect a different outcome. The operative here is “if she has the means”. In this particular case she DID have the means but I guess for her it was either more important for her to be in the spotlight than be a good ally or it simply was not a part of her thinking, which is sad since she has been aware of this strain in our community for a long long time, thus I give her no quarter.
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“I’d also note that it’s important to learn to write well. There are lots of resources you can use to learn (reading a lot is probably the most important one); but take advantage of them.”
That’s part of the problem isn’t it? Not the ability to write well but the fact that autistic communication styles aren’t considered legitimate if they don’t conform to the majority. I wrote very little on my youtube videos but as of now, I have millions of views. Linked all over the world. The visual is one way many autistic people communicate and think, like me. Accepting other’s standards as the only legitimate or worthwhile standards is cheating ourselves out of the beauty of what it means to be autistic.
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CS wrote:
“The visual is one way many autistic people communicate and think, like me.” Interesting that so much of the modern world prefers this mode of communication as well.
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Oh, just noticed your title. When did I say I wanted to be interviewed.
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@CS:
You are right that it is not all about exposure. The message you have and the way present that message (not the media used, but the tone, purpose, etc.) are as – if not more – important. And yes, how “well” the message is put across is important as well. It’s not just “autistic communication styles” that are not considered legitimate if they don’t conform to the majority. Unfortunate, but true.
While it was your comment that triggered my post, these ideas have been rattling around my brain for several months based on many (many) such comments in a wide array of contexts. I don’t believe you ever did say you personally wanted to be interviewed, and my thoughts here were not aimed at you personally; I apologize if that is the impression you got. My intent was simply to provide general information on a topic I have some experience with.
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@CS:
You are right that I liked the essay about allies. In fact, I’ve been working on a post – tentatively called “Advocates and Allies” – that I’m hoping to finish soon. From my reading and understanding of the essay, I see Kristina as one of the the most effective non-autistic allies out there of the autism / neurodiversity community. True she doesn’t have much to say directly about adult autism; I think that is probably because she is so involved with and focused on an 11-year old. (Though, of course, I can’t speak for her or her intentions; I just know what I was thinking about 6 years ago when I was in that situation.)
When I look back at the list of what makes a good ally, I can’t help thinking that she embodies most, if not all, of them. (I’d also like to go back to the point that Kristina was not representing autistics in the interview, she was representing a parents view.)
Please help me understand what would make a good ally in your mind? Are you saying that she, or I or any other non-autistic allies, should never express our own views unless or until an autistic person is given a chance to express theirs first? That we should never say something that contradicts an autistic persons view?
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“I see Kristina as one of the the most effective non-autistic allies out there of the autism / neurodiversity community.”
I’d be interested in how you come to that assumption based on Phil’s essay. Perhaps you can take the essay point by point and demonstrate your opinion?
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@CS:
I was planning to address some of why I think Kristina is an excellent example of an ally in the post I mentioned (“Advocates and Allies). But now, before I finish that up, I’m anxious to understand why, in the context of Phil’s essay, you don’t think Kristina is a good ally. This could have a significant impact on the post since it is entirely possible that I am misinterpreting what Phil is saying.
In an earlier comment you said, “Ms. Chew is not being a good ally in my opinion when she does these things if she has the means to affect a different outcome.”
I would agree that she may have had the opportunity to affect a different outcome, but I don’t know that anyone can say whether or not she had the means to affect the outcome that you would have preferred.
I go back to my previous question: If I’m in a similar situation in the future, suggest that the reporter speak to an autistic adult or an autistic parent, and am denied, what should I do? Do I decline on principle and not do the interview? Or do I continue with the interview and do my best to get out the message?
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“If I’m in a similar situation in the future, suggest that the reporter speak to an autistic adult or an autistic parent, and am denied, what should I do? Do I decline on principle and not do the interview? Or do I continue with the interview and do my best to get out the message? ”
If they don’t want to interview an autistic parent or adult, I’d probably question the purpose of the interview with the reporter and wonder what their agenda was.
Rather than share my view of what Phil wrote, and thus contaminate your own thinking, I believe it would be interesting how we could view the same thing very differently. Perhaps I could do a joint answer to why I believe she isn’t based on his essay and you could print both points of view on your blog.
If Phil jumps in and disagrees with any points made by either of us, it doesn’t really matter because it is what WE get from the essay, not what was meant by the author.
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I see Kristina is going to be on ABC tomorrow. I guess of course it was just her “really good blogging” for the reason that autistics are invisible to the mainstream press?
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@CS:
“I guess of course it was just her “really good blogging” for the reason that autistics are invisible to the mainstream press?”
You’re kidding, right?
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“You’re kidding, right?”
I’m just agreeing with what you wrote here:
“Now I don’t know how Newsweek chose Kristina for the interview, but I have the feeling it had a lot to do with the fact that she blogs about her experiences parenting an autistic child. Not only does she blog, she blogs extensively, prolifically, and very eloquently.”
Were you just “kidding”?
I’m trying to nudge you to “think differently”, to question why this happens and can allies do something about it.
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@CS:
I should have been more clear. What I am really wondering is this: Do you really believe that Kristina Chew’s – or any other neurodiversity supporting parent’s – blogging is the reason that autistics are invisible to the mainstream press?
I have very good ideas of why “this happens”, and it doesn’t have anything to do with blogging by parents of autistic children. Do you think the autism advocacy would be better off if we weren’t blogging, if we didn’t take the opportunities that present themselves to us to get our message out and try to counter the anti-autism (and autism-angst) crowds?
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Thanks for the point about my comments on blogs by autistic adults, CS. I try mostly to read and learn. In my day to day to life, and in my past, there are and have more more than a few individuals on the autism spectrum.
I suggested that autistic adults be interviewed for Newsweek.
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“I suggested that autistic adults be interviewed for Newsweek.”
Why not report that angle then? That would have been far more interesting than what you wrote, at least to me. Which is more important, the vaccine argument presented or the fact that the reporter didn’t care to interview an autistic? Which is the bigger story and more important, the vaccine argument or the fact that the press had no interest or did not pursue interviewing an autistic person for their view point?
“In my day to day to life, and in my past, there are and have more more than a few individuals on the autism spectrum.”
Thanks Kristina, I never would have guessed that.
See Brett, this last comment of hers is exactly what I’m talking about. She writes this comment like I have no idea what her blog is about, reminding me that she has people with an ASD in her life. Good grief is that condescending. I wonder if it was written to me or for others that may read your blog and not know who she is. Either way, she wasn’t talking to me but at me.
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“Either way, she wasn’t talking to me but at me.”
That’s a common issue with how people relate @ autistics. The misconception often creates a cycle of miscommunication which includes autistics relating similarly to others.
It reminds me of how some will find it offensive to not have eye contact when you speak while others are challenged by it. Being ignored to me is a threat like being path of a truck and I better let someone know I’m there or get run over.
Lot’s of autistics are in similar situations all the time. Other people often don’t even recognise their own tire marks they inprint on us.
Either way, we are often in the room when we aren’t acknowledged and avoiding us doesn’t always make us go away. Although some people work toward that goal with enough effort that they must believe they can accomplish it.
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This is a bit off topic but the title of her blog Autism Vox is itself offensive. She is not Autism’s Voice. She is a non-autistic with a loved one who is autistic but she herself is not autistic and therefore not an autistic voice or autism voice. Its about as ridiculous as if I were to create a blog called Neurotypical Vox, and wrote about my wife and how difficult it is to understand her and to try to help her with her neurotypicalism and then go on TV and act like I’m an authority on neurotypicality and talk about her as if my voice was the only authentic voice for her. I would be a very uncaring husband if I didn’t insist that if the interviewer wanted to know what neurotypicalism means then they should interview my wife or another NT person.
I’m not saying that NT’s can’t be good allies, they can. But they must never put themselves in a leadership position in any way, which is how I view what Kristina is doing whether knowingly or not. I’d rather be represented by an autistic I disagree with, like JM, than a non autistic person. I’m sure this doesn’t make much sense to you but once autistic people have equal power, then I defer to the autistic that at least is being given a chance to speak for us rather than a surrogate. The vaccine argument is causing a lot of harm I believe because it is taking our limited time we have in the news and monopolizing it with trivalities (sp?) that aren’t important for inclusion, education, opportunity, independence and safety which is what most autistic people struggle with their entire lives.
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@CS:
“Either way, she wasn’t talking to me but at me.”
From your comments, you seem to think that the comment Kristina left here was directed at you as an autistic person; my experience with Kristina, both through her public writing and personal correspondence, is that her comment would have been the same no matter who the intended audience was.
This is a general problem when we only know someone through their public writing; we can’t help but project our own ideas of what we would have meant had we written something. For example, I usually expect to see friendliness and politeness when I see a comment from Kristina, and that is what I see. You expect condescension and disregard, so that is what you see.
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@CS:
Once autistic people have equal power, it won’t matter who speaks for them: people are people.
The vaccine argument is causing a lot of harm, but not because those who don’t believe in a link are engaged in the argument. It causes harm because it exists. Those who try to squash the belief in a link between vaccines and autism may not be engaged in the type of activities that directly benefit autistics, but if no one puts down the belief in a link by the general – scientifically illiterate – public then many of those direct actions will likely come to naught.
The non-autistic people, especially parents, who believe in the link are not likely to listen to scientists, non-believing celebrities, or autistics when it comes to arguments against a link. Those with the most chance to sway their opinion are the parents – the non-autistic parents – of autistic children and adults.
A quick reference to a quote from Phil’s essay on allies:
– – — — —–
But many [family members] are not [strongly motivated], because they have bought the “cure” model. Parents of young autistic children and those of newly diagnosed children often get only that model from the “autism establishment”.
The presence of parent allies in such situations — who can speak and relate to these parents on a parent-to-parent basis — could really counteract that one-sidedness and open their minds to other possibilities, in ways that even the best communication from autistic self-advocates who are not themselves parents (such as Jim Sinclair’s classic essay “Don’t Mourn For Us”) cannot, at least until they are ready to hear it.
Parental motivations change as personal goals move up the Maslovian pyramid: now it becomes a matter of rights and access.
It is easier to find allies among parents of kids whose issues now revolve around access to education, employment that truly leverages their abilities, stable and safe living situations, and so on. They have begun to understand the battles we are fighting; they have begun to fight the same battles themselves.
Where parents of kids whose issues are at a more basic developmental level are not receptive to our message, they may be more receptive to the voices of other parents — particularly as they look towards the future and seek out other parents who have “been there” before them and worked through the challenges they have as parents. This is another situation where parent allies may be more effective than even we can be, at getting our message heard and spread.
Allies — even those from the “more able” sector — can help by helping us be heard and by validating what we say. Sometimes this is the best counter-measure against those who seek to invalidate what we say and who we are.
—– — — – –
We all have our roles to play, even if that role isn’t always accepted or appreciated.
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