Language Matters

I have a (negative) visceral reaction to the word "recovered" as in, "recovered from autism." But I have heard this word used by the same parents who do their utmost to help their autistic children (they are usually the ones who will also not say "autistic children" because they prefer "children with autism").

I prefer the expression "shed the diagnosis" because I view this as more accurate. But I am very, very confused as to the way I can "frame" my thinking around autism as a newly dx'ed parent.

Can you give me some pointers on how to frame my thinking, or is this all a matter of semantics and I'm letting this bother me more than necessary?

There might be two simultaneous related directions in which I could help you frame your thinking, for the purpose of helping you not be distracted by the fact that this bothers you, because these things have banged around in my ears and head for a long time. But I really hope it doesn't stop bothering you altogether, because you are actually right that "shed the diagnosis" is more accurate... for something.  When I was in my salad days, it was even a goal of mine.  Now I believe there are even better things than shedding diagnoses.  "Recovered" is a good word for what my best friend, who is an upholsterer, did to these chairs. (If you are in Seattle, do look around that site in case you ever need something done.  Jennifer is brilliant.)

I'm going to put a little bit more of the follow up information on your question in here so everyone is reading the same page:

My child went through an intensive intervention which helped his ability to verbally express himself. This same program exposed me to other parents of young children on the spectrum and the prevailing attitude (I don't think I exaggerate when I say predominantly "fix/cure.") When I casually mentioned that I didn't believe autism has a "cure" (because I don't subscribe to a disease model of autism), one parent said to me, "You're wrong! They can be cured!"

Maybe it is because this is still "early" on for me, that I'm dealing with what seems like basic premises. Yet such basic premises, and philosophical differences therein, drives a lot of my decision when looking at where I get my support and knowledge about autism from. So for me it's become a bigger deal than I anticipated.

This is a tremendously big deal and you are not being unnecessarily picky or anything like that.  It seems to me like your thinking is quite good and you are standing in a hurricane of conflicting talk and conceptualization, and while it may seem basic to you in the "early" sense, I think you also sense that it is basic in the fundamental sense that people are forging new identities and potential inadvertent barriers for themselves and their families around these choices, which they unfortunately do not often experience as chosen choices.

That you see yourself able to choose at this early stage is a remarkable gift.  Society is not geared for that.  I salute you.

There is no cure for autism.  If there were, most autistic people would not choose to be cured of something so intrinsic to them as their neurological makeup and all that follows from that, such as views of the world, ways of thinking, and so on.  There is an Autistic Culture, and Autistic Community.

I no longer want to shed the diagnosis, because then I would not be a member of the culture where people understand why I like to type instead of talking on the phone and so forth, for one thing, and are more likely to get my sense of humor, and straight up answer when I say, "What do you mean?" instead of saying something like, "You're kidding, right?"

Sometimes when people hear this sort of thing, they show signs of imagining that whoever is saying it is only able to say it because of being what they call "high functioning," which I take to mean something like, 'currently fluent in verbal expression'.  I used to take it to mean employed full-time, but what with the economy lately....  However, I know many people in the Autistic Community who type all the total time and verbally or orally speak never, or super minimally, and have expressed the exact same kind of sentiments I am typing right now.  Also, you know I am a professor, because it is in my profile, so you know I talk.  But if you did not know that, you would only have evidence that I type.   This is the case online: you may not know who is not so much of a talker.  So when people imagine that only certain kinds of Autistics have lives worth living, lives they like living just as their own selves, it is a misunderstanding, and incorrect.

In the old days I wanted to shed the diagnosis because I did not know there was a community.  This was before the internet and I was the only person I knew who was so much like myself.  Other people I knew who were Autistic had grown up in the Institution that was closing.  We got along great and enjoyed a related sense of humor, but they had institutional culture, and I felt like I needed to husband and leverage the small amount of social power I had available to me because the stigma was so amazingly strong in those days.  People with disabilities were treated like children.  Everyone was shocked at the idea of including them in safer sex/AIDS prevention education, for example, because obviously nobody with intellectual or developmental disabilities would ever have a libido or etc.  (See how I said "them" there?  That's what it was like, then.)

There are two cultural or community situations which are to various degrees analogous to this one (Autistic) that have been around longer and may help to think about.  The primary analogy is that one gets a ticket to the culture because of the way one is, but one's parents often are not that way, and also there is a history of stigma and misunderstanding wherein groups of outsiders, some hateful and some actually shockingly well-meaning, believe you would be better off dead or not-you.  I am speaking of the Deaf Community and the Gay Community.  Another part of the analogy is that not all people who have a ticket to the community in any of these communities choose to participate.  There are some "Aspergians" of a particular bent who do not want to associate themselves with other Autistics at all; there are people who choose cochlear implants and lip reading and do not use ASL at all; there are very private people or people in the closet or people not in the closet but who say "we are not political at all" and things like that.

In all of these situations, the communities are unique in that one's parents are not automatically members along with one.  Some parents, even of young kids, are aware of the Autistic Community and Autism Culture, and they have their counterparts in a group called PFLAG in relation to the Gay Community, I think.  I think this is a very good position to find yourself in.  That feeling a parent has of "oh no, what will happen when I'm gone" is not so bad if you can clearly picture things about your kid's life a bit.  (I only recently know what some of these feelings are like first hand instead of just in my imagination.)  Also, if you are a friend and ally in the Community and aware of the Culture, then your child will be able to have access to mentors and role models for life much sooner.

Being cured sounds like a terrible, nightmarish, nihilistic goal for me.

Shedding the diagnosis sounds like an uncomfortable, dishonest, masochistic goal for me.

Having a good life sounds best.

Now that I have hopefully talked you into being even more like you already were, enhancing and magnifying the original problem, here's the part where I try to help you reframe your thinking when you hear stuff that gets your goat so it doesn't drive you up the wall. 

If you have just made the leap from "shedding the diagnosis" to "having a good life" you had to be ready to do so.  If you have not, you were not ready.  If you are thinking, I will never be ready, because I do not agree with that, then that is a valid position.

There is a similar leap from "being cured" to "shedding the diagnosis" and some people are not ready to make it, and some will never be ready.  Some people fly over to "having a good life" in a single bound, which is what I think Ariane Zurcher did... when she was ready.

The main thing that I do that makes me give myself issues is where I take responsibility inside my head for making sure that everybody agrees with the things that I tell them, and if they don't, I didn't phrase it well enough, or work hard enough, or do well enough, or whatever, and I betrayed the cause or something, and a whole bunch of little kids will be called the wrong thing and have gross breakfasts even or whatever ALL BECAUSE I SUCKED.  This is very stressful.  

When I want to stay mellow, I do my best to make the case for something I think is important and then I let go...if they want to believe the things, they will do it when they get ready.  This happened at a meeting today, which to my joy went well--but had it gone pear-shaped, I would have been able to cope, because I was ready.  A good side effect is that people can say more stuff in front of me without my teeth getting all hurty, because I am thinking, OK, that's where they are at right now, but I am not with that.  We are separate.  Long live space.

And then I decide if I want to talk to them about what I am with, if I want to engage in more dialogue, or not.  Because other people's stuff isn't really my job to worry about, once I have done my best.

This is not so easy when I am working out where I stand, myself.  So, I do get that.  That's a tough place.  So if that's where I am, maybe my best is disengaged for now, not letting people yakkety-yak in my space.  My friend has a sweatshirt that looks just like a university seal, with the university initial part being taken up with STFU.  Heh. 

So, to make it easier on yourself, be sure to note that you stand with me.  You know, so I don't suck and have to flip out about it.  ;)

Best,
Ib