Parents: How, and How Not, to Listen to Adults with Autism


In my last message regarding the dialogue series that The Thinking Person's Guide to Autism is doing between a parent and two self-advocates, (I explain the whole thing here), I made a notable and deliberate omission.

I wrote this to Robert Rummel-Hudson, after explaining that he might be asking things of people with autism that are impossible for us:

You cannot be expected to know these things.  You don't know a lot about autism.  But there are several NT people who have followed this closely, who do know a lot about autism, who did not point out to you that you keep asking things that might be impossible for the other person to do. 

And I wondered, what's the point of knowing about the communicative challenges that people with autism face if you don't use that knowledge in a situation like this?  Why was no one NT giving you the information about autism you needed?

Because I had been so aggressive with Robert in my first piece about him, it was important to me to give him as much space as possible to listen.  But I knew that the above was not true.  I knew that Shannon Des Roches Rosa had written a piece that did exactly those things, and that Robert had at least been asked to read it. 

Shannon's piece is really amazing, and it's here.

Please, please, please, please read it if you have not done so.  And visit all of the links-- every one is worth the time.  Here's a taste:

If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:

My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.

It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?

This is exactly what I want to say, from the point of view of someone who can say it in a way that will make it easier for parents to listen than I can.  This here is another long piece, and some of it is going to get sort of uncomfortable for some of you.  I would much rather than you invest the time in reading Shannon's post than the rest of this  That's not to say that I do not want very much for you to read and understand every word  that I have written-- I've worked hard and it's important to me-- but you will probably understand Shannon better.  And her tone on this is pitch perfect-- better than mine, or anyone else I have ever read.  


Please read "On Parents Listening to Self-Advocates" by Shannon Des Roches Rosa on her blog Squidalicious.  Then come back here and read of the rest of this when you have time.

Click here to continue.


In his first letter, Robert seemed like he had not bothered to learn very much about people with autism.

Ari noted this on Wednesday:

You talk about being able to live independently as being a position of privilege – it certainly is in some contexts, but let me ask you: what makes you so sure that the people you’re talking about can? Self-advocacy doesn’t mean the ability to talk; some of the self-advocacy movement’s most prominent voices are AAC users (a few examples here, here, and here. Nor does it mean having no cognitive impairment -- the term self-advocacy actually originated from people with intellectual disabilities, not Autistic people. I’ll be open about the fact that I have the ability to live independently, albeit with some struggle, but not all self-advocates -- or even all the self-advocates you’ve spoken to in these arguments – do.

There is a very odd tendency on the part of many parent advocates to extrapolate the functional challenges of people they don’t know on the basis of their political views. Over the course of the exchanges where you've gone back and forth with self-advocates, I’ve watched you talk to people who struggle with everything from independent living to self-injury to communication as if they know nothing about the problems they face on a day to day basis. I am not trying to hold you accountable for not knowing these things about total strangers – but I do think you should hold some responsibility for not caring to find out, or believing that only those who are willing to elaborate upon all of their personal challenges could have the right to disagree with you.


And Zoe wrote this yesterday:

I have some concerns from you letter that I’d like to address. You say that you are committed to listening to self-advocates. When I said that some parents are hostile towards the political participation of disabled adults, you told me I was wrong. Yet certain parts of your letter on Tuesday read like a list of reasons why what I think doesn’t count. That feels hostile to me.

You say that I don’t understand the scope of the disability community because I live independently, which you seem to have extrapolated -- incorrectly -- from the fact that I write a blog. It’s true that I have gotten pretty good at blogging; I consider it an accomplishment to be proud of. However, you won’t find “posting writing on the internet” on any list of vital Activities of Daily Living. For the record, many of the tasks you will find on such a list give me a lot more trouble than writing a blog does.

You say that my ability “to even have this conversation” means that I am too “high-functioning” to advocate for disabled people as a group. I would like to point out that you have essentially created an impossible standard: anyone who can express disagreement with what you say isn’t disabled enough to have an opinion on the subject in the first place. I think you’ll understand when I say that this isn’t the way I expect a committed listener-to-self-advocates to respond when I express my ideas.

Both Ari's and Zoe's pieces are also worth reading in their entirety.  Please read them, too-- they make many more interesting and important points than "Robert Rummel-Hudson does not show signs of working especially hard to listen to people with autism." 

Robert's letter today made me sad and angry again, because Robert still shows no real sign of having listened to Ari or Zoe. 

He does not reference or seem to have absorbed a single point they were trying to make.  This is the closest he comes to doing so: 

For me, that evolutionary process began in earnest in 2003, when Schuyler was diagnosed, and it has continued in fits and starts ever since. I'm hopeful that in the past few weeks, my eyes have been opened by my interactions with people like Zoe and Ari and others like thAucast's Landon Bryce.  When Mr. Bryce suggested earlier in the week that I'm clueless about autism, that statement was in fact one hundred percent accurate. I will own up to that without hesitation. And Mr. Bryce wasn't being dismissive; indeed, he went on to put together an essay that spoke to the heart of my own issues.  It was a much appreciated gesture. If I want to work as an advocate for a larger social change, I need to do so with a broader understanding than just that of a parent-advocate.

Parent-advocates are well served by broadening our understanding, because Zoe is right. We do receive a disproportionate share of "authority" on disability issues, as assigned by the media and society at large. I don't think it's always inappropriate, to be honest, but the fact remains that our voices are being heard in a great number of places where a self-advocate's voice would better serve the cause. And not just for their life experiences, but for their passions and their opinions and most of all their right and absolute ability to guide policy-making. 

I am a little embarrassed that Robert references my response much more directly than he addresses Ari's and Zoe's-- I'm not sure I would have written it if it had occurred to me that he would do that.  The only specific point made by either Ari or Zoe that he addresses is Zoe's about "a disproportionate share of authority," but she made that in her first response to his original offensive essay. Over a month ago.

Certainly, a serious response to what she wrote this week would have addressed the issues that Ari and she brought up above, about making assumptions about the abilities of the people he is talking with.  Certainly it would have included an opinion on the major concrete proposal that Zoe made: parents adopting the PFLAG model for advocacy.

Robert's response might have been written without him reading what Ari or Zoe said at all.  And he did write it, at least a lot of it, before Zoe posted her second letter.  I know this from his Tweets:


The exchange above happened just a few hours after Ari's piece went up, the day before Zoe's second piece did.  Robert says he used the same "imagery" in his response that his fan used in her piece: dogs fighting over scraps. And he apparently did that before reading at least Zoe's, and very likely Ari's as well. 

Both Ari and Zoe entered into the spirit of dialogue-- they responded directly to what Robert posted on Tuesday.  Robert ignored what they wrote and wrote what he wanted to say.  

Why did he think it was okay to do this?  At least in part, because one of the editors of the site sponsoring the "dialogue" told him he didn't really have to listen.

I was looking at Robert's Tweets because of this amusing but unsurprising message:

I can’t handle the fact that RRH doesn’t know people know he has a twitter! He’s like one of those moms who get a Facebook and use it to talk about their sex life because they don’t understand that everyone can see it.
He tries to write polite stuff and then goes on his twitter and just talks about how everyone hates him/is out of control. We can see your twitter! People you talk to on the internet can see THE WHOLE INTERNET.


So I decided I'd better check out his Twitter feed.  That's when I found out he'd written his response without reading Zoe's.  And what else did I find? TPGA editor  Emily Willingham telling him not to pay too much attention to the responses, before he even published his first letter:   

Robert:  Should I light this (metaphorical) firecracker in my hand? How bad could it hurt, really?

Emily: If it's about open discussion, communication, airing of differences, all in the name of reaching understanding...sure.

Robert: I hope that's how it goes, I really do.

Melinda: Go to it, man.Sure you will get shot down -but only virtually.Key Q: Will the haters show up on your front lawn with firebrands ?

Emily: If it doesn't go that way, remember...your world &hers matter most. Others ultimately must fend--& understand--for themselves.  I think sometimes we just have to understand that we may not fully understand, & that goes both ways btw people.  


What's wrong with that?   Well, what's the point of entering a conversation if your starting point is that it's okay not to understand other people?  Is it really okay to simultaneously invite autistic people for whom communication is harder than it is for you into a dialogue, and to tell the person with whom they are entering into that conversation "we just have to understand that we may not fully understand"?  Were they not invited to waste their efforts?


This was the most offensive exchange that Emily and Robert had on Twitter this week:


Emily makes a habit of claiming that self-advocates attack people's parenting, but is never willing to actually produce any examples to back up what she says-- she does it to me in the comments of the piece I started this article with, she does is in the screenshot above with Ari.

As I wrote to her by email last week:

 I do find the inference in your post there are people telling you that autistic people are always right and that you should put the opinions of other people above your own when raising your kids.  And I'm sure I could find instances of cranks with blogs saying just those things. 

But that's not me, or Ari, or Corina, or Julia, or any of the self-advocates Shannon is talking about.  And this jump to extremes is a default parent response-- people honestly do seem to believe that "What I have to say is important and it would be to your advantage and the advantage of your child to listen to it" really means "OBEY! I KNOW ALL!"


Robert probably would have written his piece without reading Zoe and Ari, even if Emily had not interacted with him at all.  And I do not think she had any ill intent.  I think she just thinks parents know best and there are a lot of bossy autistic people out there hurting their feelings for no good reason. She's wrong about that, and really needs to be called on it.  Parents need to demand examples from her the next time she does it. 


But the mixed messages sent by the editors of The Thinking Person's Guide to Autism in this discussion are significant. 

Autistic people should not have been invited into dialogue by one editor while another was telling the NT person they were in dialogue that it was okay to ignore them.