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Thursday, 28 February 2013

Autistic People, Accommodation, and Double Standands

I had an interesting online conversation about autism with a couple of women the other day. Let's call them Jane, Sally, and Betty, for simplicity. It all started with Sally talking about her  belief that autistic people need to do dominate the discourse on autism as they're the experts on their own experience (I do agree, by the way. Who better to talk to about the experience of being autistic, and the needs and desires of autistic people, than autistic people themselves?)  Jane agreed as well, but voiced a concern that some autistic people need to made aware of how they present to others to be sure they're not coming across as "snappy".

And we were off and running.

Oh, Online Arguments...

Online isn't the ideal place in which to have a discussion like this, especially with  four people involved. It was difficult to track who was talking to whom (and responding to what). Points and questions get lost. And, as in any medium where you can't see anyone's face or hear their voice, online words get taken in ways in which they weren't intended.

Not that I'm exactly sure anything was misinterpreted here (especially after seeing a more contentious continuation of the conversation the next night). Jane definitely didn't come across well, but I don't think that she intended, at least during the conversation in which I was heavily involved to sound insensitive. I think that she was perhaps only very minimally (at best) familiar with the autism acceptance movement, and with the idea of privileged groups in general. But, despite all my years working with disabled people and a not insubstantial amount of training, I wasn't aware of the autism acceptance movement. And privileged groups? I may have understood intuitively, to an extent, but I couldn't have explained it and I wouldn't have used those words. I certainly wouldn't have explained "privilege" anywhere near as brilliantly as Lydia Brown does here: http://www.autistichoya.com/2013/02/ableism-tone-police-and-hypocrisy.html

Lydia acknowledges in that post that most autistic people  "frequently do have communication and language impairments".  I've been doing a lot of thinking in the past few days about autism as a disability, and accommodation, and double-standards.

"I Know Better Than You What's Good for You"

Later that evening, I participated in my first "Tweetchat", hosted by Sally, about why autistic people feel the need to be acknowledged as experts about autism. I understand this. When you live with a disability day in, day out, it's difficult to accept that society doesn't consider you as much of an expert on it as a person who's done (granted, a great deal) of reading and research on the subject and has some letters after their name as a result. Especially since the the general orientation toward autism still seems to be that it's something to be cured, and that people with autism should be provided with supports that help them to become "less autistic". There's an assumption that autistic people *want* to reduce the behaviours associated with autism, so that they'll fit better into society (increasingly not the case).

In the earlier online conversation, Jane, who works with autistic people (she didn't say in what capacity) went as far to make the following arguments in favour of autistic people adapting the communication style to whatever extent they could to a tone that society found pleasing and reasonable, for the following reasons:

  • It's good for them to try to adapt

  • People l like it when tone matches words

  • Since they're the minority, they should be trying to adapt to the majority

  • I also read (whether it was corrrectly or incorrectly) an implication that if autistics are to expect any accommodation for communication difficulties (and that they really shouldn't) they really need to be first be sure that they are trying as hard as they can to adapt their communication style to appear "less autistic".

The Problem for Autistic People

The problem here is that society has has taken it upon itself to make a bunch of arbitrary rules for how autistic people *should* communicate (not necessarily the same "rules" that Jane laid out, but you'll find a bunch more in Lydia'a discussion on "tone-policing), and absolved itself of any responsibility to provide accommodation for what is a very real communication disability. Some will be able to adapt to a certain extent, some simply won't be able to. Some won't want to, because they don't see autism as something that needs to be "cured".

When I consider tone-policing and the pressure on autistics to appear "less autistic", and how they fit into my understanding of what disabled people should be able to expect, in terms of accommodations for disability, I'm confused and saddened.

I've never had said to me, as a disabled person, by non-disabled-people:

  • "It's good for you to try to adapt; why don't you try picking up that pen with your right hand/walking to the store without your cane?"

  • (I can't think of an example for "tone matches words" that I can apply to my disability. This was a very specific response to a point about how people should respond to content in a conversation with an autistic person, as opposed to how it's delivered)

  • "You should be trying to use both your hands and walk without your cane because stroke survivors are a minority in society and minorities should try to be like the majority.

  • "You shouldn't expect elevators or cleared outside stairs in winter unless you're doing every that you can to get better."

I can't think of anyone that I know that wouldn't agree with me that I shouldn't be denied use of an elevator based on how much work I've into recovery (or on how much I'm currently putting into it). Or that I should be trying to do things that are difficult for me, given my disability, simply because most people aren't disabled, or because someone else thinks it would be "good for me" to try (with the exception of  that person of some medical professionals on my treatment team who urged to try things to see if I could do them, to strengthen muscles, to reinforce neural pathways, etc.). People simply don't do the equivalent of "tone-policing" with me, and it would infuriate me (and a number of other people in my life) if they tried.

Why is it okay to do it to autistic people?

I don't know what level of accommodation and protection from discrimination autistic people can expect under the Americans with Disability Act. If it is indeed the same level that I can expect, it doesn't seem to me that society in general knows it. That's not right.

And if autistic people aren't getting adequate protection under the ADA, that's not right either.

I need to end this here and hope it makes sense...I've been trying to get my thoughts together on this all week. Not being autistic myself, I may be off-mark with some of it, and people should please correct me if I'm wrong...these are just my impressions.

I'll probably revisit this topic as I try to sort it all out...it's really got me thinking.


  1. Camilla Medders1 March 2013 at 02:37

    It seems like people who make those kind of demands on autistic people would benefit from being more adaptable themselves. My daughter has cerebral palsy and is non-verbal. Her communication challenges are very different from those faced by autistic people, but when it comes to the people around her, those who make an effort to understand and adapt to her communication style are rewarded with the chance to know an awesome kid, and those who approach her with inflexible expectations about how communication works miss out. It also occurs to me that disability isn't the only thing that affects communication styles--so do things like language, culture and generational differences. When people refuse to put some effort into understanding others, they lose an opportunity to learn new things.

  2. I've been pondering this whole discussion as well (I've been reading bits and pieces of it in various blogs). I haven't come to a completely useful thought as yet, but I appreciate your take (so far) on the situation (since it seems you also feel a need to give this more thinking time). I had a conversation with someone whose opinion I usually respect (and seek), and I was horrified to hear her attitude is similar to that of Jane. The conversational context was one in which she spoke of autism as an "illness", and I pointed out that autistic people don't tend to like being called "ill". I was truly shocked when she responded with a derisive "oh, please!" The argument is similar in tone to that of Americans talking about foreigners coming to the US and saying: if you want to live in the US you have to speak English.

    Honestly, I don't know what the right answer to any of this is. I have to admit a large part of my difficulty with all of this is that I don't tend to like the term "expert" in general. In my mind, no matter how much someone knows there's still more to learn, so how could *any*one ever be an expert? On the other hand, who am I to say I know? I may have 25 years of working in collaboration with autistic people, but every day I feel like I probably goofed at something important to one of the folks I work with and hope I can do better the next day.

    I guess, since I used the word "collaborate" I kind of want to use it again. Perhaps, for all people on all sides of the discussion- autistic and neurotypical- what would be most helpful is to have each of us offer what we think we know, listening, collaborating, tweaking, revising what we think we know, and figuring things out together.

  3. The House of Autism is a very difficult place to reside in and it is probably the most divided House in the disability community. My opinion, purely...

    Autism is not the same impairment/or not for everyone who lives on this continuum. At one end reside people who may "appear" quirky or socially inadequate (emphasis on appear) tp the self-destructive, non-verbal person. Autism encompasses a massive spectrum of many people, each exhibiting "autism" in his or her own way.

    It's a divisive house. You have the "curebies" looking for a cure, you have those who simply desire acceptance; you have those who are anti-vax, those who "cure with "bleach", you have those who advocate for ABA and those who condemn it. You have those who will live somehat independently, those at home, those in group homes and those in institutions. Autism is often muddled with other diagnosis...ADD, ADHD, PDD NOS, and on and on.

    Who are the experts? Well, verbal persons with autism can speak to the accommodations they need; others cannot speak for themselves. S B-C and theory of mind and empathy? It's probably the most discussed issue. They more I read, it appears the less I know.

    Ultimately, genetics, nature, nurture, BPA, GMO's etc. It's a house divided. My position? People on the spectrum are to be loved and given the supports they need to be happy. Simple statement, I haven't a clue how to accommodate unless some can give me a direction. I do know that you cannot simply intellectualize the problem away...you must experience and love!

    Well, I feel like I've said little and contributed less...

  4. I think that you've actually said and contributed a great deal, Philip, and that you've really boiled this down to the level where it ultimately belongs.

    When I participated in the Tweetchat, I brought up a point that came from my own experience of being a disabled (though non-autistic) person, and one of the hosts (rightfully, I think) pointed out that a lot of these issues surrounding autism are ones that the disability community struggles with in general. Yes, some are *very* specific to the autistic people (as some issues are to, say, people who use wheelchairs), but there are these ultimate issues that keeping coming up again and again for me as fundamental ones when we work with people to figure out what supports they need:

    What does the person need?
    What does the person want?
    What do the person want from their supports? What does the person not want?
    What challenges does the person feel especially holds them back?
    What would the person like to see more of in their life?
    What would they person like to see less of in their life?
    Would the person like to try anything new? If so, what?

    Communicate with the person, right? Other people can have input, of course, but it's the person's life...and to figure out how to best support, we have to listen.

    I get the sense (and people should feel free to correct) that many autistics just want to be listened to and have their answers to what would work best for them in terms of life and supports (and opinions and beliefs) taken seriously...not dismissed automatically because they are "autistic"...

    And to be loved for who they are, just as all of us would like to be.

    Thank you, Phil. :)

  5. Hi Roia! Nice to see you!

    When the word "expert" was discussed in the Tweetchat, there was a very specific reason why the hosts were suggesting that it should be adopted. I believe that it had to do with the fact that "autism expert" gets used the most in Internet searches for knowledgeable people on autism, so it made sense to align with that group. However, "expert" was problematic for some participants as well, and there seemed to be a consensus (as I understood it) that at least this group wanted to do some more thinking and discussion about words like "advocate" and how that relates to "expert". I agree with "expert" in theory (as in, I'm the "expert" on my own experience as a disabled person, but certainly not a stroke expert), but maybe there is a better word...it will be interesting to see where the discourse goes.

    I like your thinking about this being a collaborative process - I actually suggested during the Tweetchat that perhaps, if "expert" is the word that's going to be used, it can be a label that different people with different types of expertise share...those with the academic expertise, those with the expertise gained from being autistic, those that come with expertise from being family, caregivers, workers...why does it even have to be divided into "autistic" and "neurotypical" or "academic experience" and "personal experience" when we could share knowledge?

    I like your analogy about the Americans talking to foreigners who come to the US...that really summed it up nicely for me.

  6. These are great comments, Camilla. Some of the most rewarding experiences of my career have been with people that don't communicate verbally. It requires a different kind of listening, but it's so worth the effort.

    It brings to mind that quote, "Seek first to understand, then to be understood." Not sure who said it, though...

    Thank you for your comment!