Saturday, July 13, 2013

Allistic to Neurodivergent K Interpreters Are GOOD.

Every once in a while I have a situation where something happens and it requires a meeting or other encounter in a power imbalanced situation. It might be an emergency room, it might be a meeting because someone doesn't understand that the ADA does apply to them, whatever. I don't like to let shit slide, and I don't.

This is a problem, though, because power imbalanced situations make me profoundly anxious. And things that happen when I am anxious? I get even worse at moderating my 'tone' (seriously screw 'tone'), I get worse at understanding content-free speech-if you have ever been in an office setting ever you know what content free speech is, and I eventually lose all ability to speak coherently. What happens instead is an exciting mix of ASL, K sign, noises, and the occasional word. People don't understand that, and they see it as a reason to not treat me as a person. I can't play by their rules, so I am not a real person, you know? And text based communication is right out with these people.

So what do I do in these situations? I bring an allistic, of course! This person's job is to be my Cognitive Interpreter-that is, they (in my case, usually he) translates whatever it is I am saying or flapgrunting or what have you into somewhat palatable language for these people. And he translates "we need to come to the table and dialogue for synergy" into "they want you to go away after they tell you that you're wrong but don't tell you why". And when I ask, "did they just tell me to fuck off?" he says "why yes they did!" as the nurse is protesting that she is sincere.

A cognitive interpreter is not someone who speaks over me. One of the reasons I get flustered in such situations is because I don't have time to translate thought to English to socially acceptable English before people start talking over me. A key thing my cogint does is tell those people to shush and let me finish (or start). I am spending less energy fighting for my communicative space if someone else is doing it for me. He is also backup when it comes to the repetitive "but why are you right?" circle that happens in any adversarial conversation ever. Those meetings tend to get very gaslighty very quickly, and the backup of someone seen as a real person is grounding-it dumps a bit of water on the lamp, knowing that I am right, look, someone I actually respect agrees.

That's a lot of what it comes down to in most situations: a 'real person' is lending his support to the things I say. Sometimes he is voicing what I mean but can't make my mouth say. Sometimes he repeats absolutely verbatim exactly what I said and, like magic, they listen (which is annoying, but it happens). If I say I hurt, medical people don't believe me, but if a real person does? Suddenly they listen. He's a reminder sometimes, I think, that real people care what happens to me. One time I was in the ER with an adrenal crisis after a fairly minor accident in which I got jostled. I was very, very still and sedate-which is not like me. The doctors did not believe me that I was really not doing well at all. They listened to cogint, though, when he told them I don't sit still like that. My pulse was 40 and my blood pressure was something like 66/38. That's not conducive to staying alive-but they apparently needed a real person to tell them.

This cannot be said enough: a good cognitive interpreter does not speak over me. They do not try to make themselves the center of attention, they don't volunteer extraneous information in any situation. They do not put words in my mouth. They are almost but not quite a form of AAC and they are a drawbridge to communication with allistic society. I say drawbridge because the bridge goes up when it's not needed as a tool.

A good cognitive interpreter knows and respects the person they are helping. They know which flaps are happy and which are not so happy-I may not have standard facial expressions, but everything you could possibly need to know can be read from my hands. They know distress signals and happy and they know how to shut up when told to let me stand on my own until shit goes south again. They provide moral support in addition to communication support. Sometimes they're just called an advocate, but they're different, because they do not speak for in the traditional sense. They just make sure everyone is actually understood.


  1. Great post, very interesting. My son has two of these, we're called his parents! But we do have the same problems as you do. Quite often the professionals will only hear our words when they are repeated by another professional. After all, what do we know, we're only with him 24/7?

    1. I'm inclined to disagree that you are treated exactly the same. Look, I know you mean well, and many professionals are far more revered than parents. I get that. But there is a huge difference between the way my (allistic) spouse is treated by people in regards to speaking about our autistic children and the way they treat me. Like K said, we aren't regarded as real people. But while parents may be regarded as ignorant, and have their voices ignored, they don't have the same experiences that we as autistic people do.

    2. I have a great example.
      I am autistic and my allistic daughter has a lot of medical issues. I told her pediatrician every time we saw her (2-8 times a month) that my daughter was barely sleeping and took literally all day to consume enough calories to survive.
      FOURTEEN MONTHS LATER, her father walked in, talked with the doctor for five minutes, and walked out with two prescriptions and several referrals.
      I know parents struggle to get professionals to take them seriously, but if it were the same, my partner and I should have had similar luck. Fourteen months vs. five minutes is a significant discrepancy.

    3. It's not at all like being a parent.

      Parents are thought of as people. Your words are, in fact, valued by professionals.

      It requires a Real Person to repeat it for my words to be anything but attention seeking or being an asshole or 'misunderstanding' or 'not able to understand own body signals'. Same exact words. He actually has less information in a lot of these areas than I do, and obviously cannot feel what I feel because bodies don't work that way.

      It's different. It's actually really dismissive to try to appropriate my experience as a disabled person by trying to say it's just like being a parent of one. It's not the same at all.

    4. Only just seen your response (didn't put the email thingie on). I wasn't trying to appropriate your experience at all. Being a parent is totally different to being the person with ASD. As parents, more professionals do listen to us but many don't (Paediatricians being notorious for this!).
      I also have the experience of professionals thinking I'm over-protective, exaggerating and generally thinking there is a simple solution I'm clearly not qualified to think of myself! Or coming up with weird ideas that have no relevance. Pre-diagnosis there is often a "Blame the parents" mind set too.
      I'm sorry you read my comments as being dismissive. I have actually found this blog incredibly useful, my son is non-verbal so this has been a great way to get some little insight into how he may view the world. For that I thank you and apologise for my misunderstanding between us.

    5. Jo, I understand where you're coming from, it's basically that health professionals are all extremely bad at listening to others! It's why they say doctors make the worst patients, because they are not used to *not* being in a position of authority. So yes, we all have to deal with not getting heard at one point or another.

      The difference, which I think Neurodivergent K is talking about as well, is what the consequences are of not getting listened to. As a parent, it feels like not being taken seriously. As a disabled person, it can mean death. As with the adrenal example. So yeah. I'm glad you're reading things here that can help your son!

  2. Here's a dream: Maybe someday it will be considered as unthinkable to deny/not provide a cognitive interpreter to someone who needs one as it is to deny/not provide any other kind of interpreter (I know the latter still needs work too...).

  3. I've just found your site. It's really interesting so far. I've worked with and helped and got in the way of autistic people as a teacher. I'm now retraining for human resource management and the insights you are sharing will, I hope, help me support adults in the workplace.

  4. Wow. I need one of those. Problem is, I am the universal interpreter for our family. Mostly things go pretty well. But it takes all out of myself, I shut down later. And thanks for defining adrenal crisis, makes me wonder about both Rafi and me, our BP teds to drop like a rock when ill or injured, without blood he gets into cyclical vomiting ... will def. have to check things out.