Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Wednesday, May 23, 2012

And That Was Not Someone Who Got The Point

So, Liz Szabo from USA Today, the same person who ran the #autismchat better than a month and a half ago, published another autism story today. This post is what I would like to say to her.

When you made your comment on my blog post about being upset with the autism chat, it sounded like you might become an actual ally, not one of the people who claims to be an ally but doesn't actually listen to us, the people who know the most about living autistic by way of having done so our entire lives. Maybe my expectations were high because I have not been disappointed to watch someone I thought got the point turn out to have completely missed the point enough times. Maybe I thought the fact that autistics can and do have their (and our) own opinions on autism and how to handle autism, which mainstream news all-too-often ignores, was clearer than it really was. Or maybe you forgot everything you seemed to have learned that day. Maybe you didn't even care and your comment was fluff to appease an angry reader. I don't know what to think.
I'd like to think that you honestly believed that talking to a researcher who was also the parent of an autistic child was bringing autistic voices in. But... considering the number of comments about how ONLY actual autistics speak with autistic voices, and everyone else can speak with the voice of an ally or not, I have trouble doing so. I think that the idea of talking to autistic people involved in autism research or to autistic experts on autism slipped your mind because you forgot that we do not go away when we grow up, that autistic adults exist in every career (yes, autistic doctors and teachers and scientists all exist. I'm on the way towards being an autistic something in the gray area between engineer and scientist.) Finding an autistic who does autism research wouldn't be that hard. It probably wouldn't be research into causes and cures, though, since that actually autistic know that the most good can be done by funding supports that work and doing research into finding therapies and supports that will help us better. We know how many autistics would reject a cure if offered. (Hint: That's a lot of us. Our families, I suspect, have a much higher rate of wanting us ``cured" than we do, or else there wouldn't be much of any research in that area.) We know that figuring out the causes doesn't help anyone who is autistic NOW.
So, what can you do? You're fully capable of ignoring me. You could keep writing stories about researchers and families like most of the other mainstream media writers do, not asking the autistic siblings and children how they see their own lives. You could keep writing about autism only as it pertains to children, continuing to imply that autism is a children's condition and that autistic adults like myself do not exist. I sincerely hope that's not what you do. It's not what I thought you would do when you wrote your comment on my blog before, and I'd like it if you could make me think you were different again.
This time it will be harder. A comment on my blog wont be enough. You would have to:
1) Whenever you do a piece on issues facing autistics, get the information on what the problem is and why it's a problem from the autistic people facing the issue. Conduct interviews by email instead of in person if you have to, since some of us type but do not speak.
2) When you identify someone you interviewed/quoted as being autistic, ask them how they identify. It might be ``autistic" or ``autie" or ``aspie" or ``person with autism" or ``person with aspergers" or any number of things. Whatever that person says, go with it. Self-identification is part of self-determination, and yes, many of us DO care. (I am autistic. I am an autistic person. I am NOT a person with autism, and I don't really care that the way I identify isn't considered politically correct. Put it in the article that this is the way the person said he/she wanted to be described if you have to.)
3) You can talk about research about autism of any kind that is happening. You ARE a reporter, after all. But you don't get to say that autistics want something if you only have quotes of parents and siblings saying they want it.
4) We aren't tragedies when clearly disabled, and we aren't inspirational stories of overcoming/living with disabilities when we live our lives. Don't paint our stories in either of those shades.
5) Do not take us out of context. If you aren't sure about the context, ask.
6) Don't fear-monger about autism. (If the story would make a parent terrified of the 1 in 88 chance of autistic spectrum disorders, it's probably fear-mongering. If it makes the parent think it's difficult, but still rewarding, you're probably in better shape. If you call autism a disease or talk about it as an epidemic, it's definitely fear-mongering.)
7) Remember that autistic ADULTS exist, and don't write exclusively about the kids. I know that kids are cute and cuddly, but it does a major disservice to autistics when people ignore the adults.

That should make a good start on how to write about autism in ways that wont disappoint and/or anger the actually autistic. You will, of course, still have autistics annoyed at you at times. (Some of us are militantly identity first for all cases, and some are militantly person-first for all cases, for example. Get one autistic and one person with autism in the same article, and both of those camps will be angry.) But that's OK. Autistics get angry with each other too, sometimes. What we try not to do, though, is ignore the points of view that autistics have, even when we vehemently disagree with them. We try not to let awareness of what it's like to have an autistic family member be at the expense of hearing from the people who are autistic themselves.


  1. Hi Alyssa. Thanks for your tweet. Does it help to know that story was actually written about six weeks ago, before I even held that chat? It just took a while to get into the paper, which is pretty common. I like those two fathers a lot and still like that story. But after our conversation, I went back and added in a paragraph about autistic adults who are also scientists, and even mentioned one by name. OK, that's just a paragraph, but I was trying to address your concerns. The main story was about scientists who have the amazing ability to help their kids in a real way. And Pelphrey's work is awesome. He's showing that autistic kids and their siblings are not so different. He's a really nice guy. Is that the ultimate story you wanted? No, but hey, give me time. Check my byline count. I had FIVE stories in two days this week! ( I would love to write about the issues facing autistic adults and self-advocacy, and I'm glad you gave me the idea, but I just haven't had the time to get to it yet. Our staff is so, so, so small these days. Fifteen people here got laid off just TODAY. So we're doing more with less all the time. I will do more autism stories, and hopefully they will incorporate my growing understanding of the topic, but I can't promise to get to them tomorrow. I actually had to fight to get this latest autism story in print. Another colleague argued I've been doing "too much" on autism. Now, given your low opinion on this story, maybe you agree. But if you want the media to continue to write about your community, I do think it's important to have some patience and understanding, too. If you want my personal email, just DM me and I'll give it to you. Then, if you think my story sucks, just email me and say WTF? I may have a half-good answer. Or email me with some story ideas. I may take you up on them. I think we -- and not just you, but people with autism in general -- can work together better directly, rather than just sort of blogging at each other. And if it's any consolation, and probably not, I also argued in favor of covering a recent Pediatrics story about challenges faced by autistic adults, particularly in terms of education and employment. I got overruled, but, hey, I tried. I appreciate the feedback, but I would like to ask people in the autism community to try having a more conversational attitude, and maybe opt for less confrontation? The more positive and constructive the conversation, the more eager reporters (not just me) will be to venture into the subject of autism, an area that hasn't gotten the coverage it deserves. Please don't assume reporters have evil intentions. Maybe you need to enlighten us. Maybe we're just overworked. But try working with us, too. Thanks for the feedback. I'm really glad you're reading. Gotta run -- today I'm writing about prostate cancer screening and the environmental hazards assaulting the modern breast. ;--)

    1. Knowing that it was written before that chat helps a lot, actually, and you might notice that I haven't touched what I think is wrong with anything autism published before the chat- the fact that you answered this and actually want to talk gives me more hope than you could possibly know. (We're so confrontational because we've mostly been ignored when we start off nice. Not the fault of the people who are actually trying to learn, but it means that everyone gets a much shorter fuse of niceness before we all start shouting. It also doesn't help that there are cases where we've been painted as tragedies and then a caretaker kills one of us days later- no one whose life could be in danger or who has friends whose lives have been threatened because of that is quite so patient as someone who could only be inconvenienced.)

    2. (That doesn't mean I now think the article is good. And... crushing disappointment is the politest of the emotions I was feeling, so that's the one you saw.)


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