Friday, September 28, 2012

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.  ;)



  1. Ib, great response to a question that many of us parents with Autistic kids have had to cope with. There's tremendous pressure placed by other parents who firmly believe they have "recovered" their kids (I love the upholstered chairs and your friend is, indeed, very talented!) A friend of mine wrote a post about her journey from cure to acceptance that TPGA posted a couple of weeks ago, one of the people who commented on her post, said she'd "recovered" her child who was now, 5 years later, indistinguishable from their peers and then said, "I chose to fight, you chose "acceptance". This is not an uncommon remark. I've heard it said in various ways and of course the implication is that those who "choose" acceptance have not fought hard enough or we too would have "recovered" children and that those who do "recover" their children have a stronger love than those who do not. This kind of language is not only confusing to new parents (and old) but it is hurtful on so many levels, not just to the parents, but their children who will carry that hurt well into adulthood. Parents turning on one another in this kind of adult version of Lord of the Flies makes MY teeth hurt! And we wonder why children bully (another topic!)

    One other thing I just want to mention is that the way Autism is currently perceived, as a tragedy, as frightening etc, also encourages parents to entertain their worst fears for their children. This is something I grappled with for YEARS. I was led to believe (and I know I am not alone in this) that if I didn't try every treatment option out there, when I died my child would end up in an institution. This may sound ridiculous, overly dramatic, even hyperbolic to many reading this, but I can tell you honestly this thought, this horrifying fear plagued me for years. I will be speaking about this at the Autcom conference next week in my presentation as I think it's important. This looming horror is what I worried about, was what I saw as the inevitable outcome if I DIDN't pursue some of these treatments. Had I not had that concern I would certainly NOT have subjected my then TWO year old daughter to ABA for 40 hours a week or any of the other various 'remedies' we tried and ALL of us would have been much, much happier.

    Thank you Jane for bringing up such a "hot" button topic and thank you Ib for responding and starting this much needed blog! <3

    1. It isn't hyperbolic. The medical model history of treating parents to a dog-and-pony show about how horrible your child's life will be (and by extension, what an unspeakably evil person you are) if you don't give a good number of them a lot of money and stat! is relatively recent. Several lines of professional activity have been built on its foundation, and, believe it or not, I believe a great many of the mid- and lower eschelon practitioners really believe they are helping your child by emotionally manipulating you. I also believe there are some very unscrupulous happenings happening, and people who by the light of ordinary morality ought to have trouble being around themselves.

      Prior to the medical model of emotionally manipulating parents into bullying one another, it was basically left almost entirely up to religious organizations (I'll talk about the Western world here, for time/space/complexity/parallelism considerations) to manipulate parents into bullying one another by intoning that their disabled children were already some kind of punishment and that things would be somewhat forgiven if large donations were to be made to said religious organization and/or the other villagers did bad things to the family showing lack of allegiance... This model prevailed for hundreds of years and--I could hardly believe my eyes when I saw this for myself just the other day-- still has a few conceptual adherents.

      Fortunately, both models were widely ignored by groups of cool people. We have evidence that villagers frequently ignored such teachings and inclusively considered "simpletons" and the like to be full fledged members of the community. (The language does not always seem to have carried the same aesthetic.) Today, many parents reject the ethos of the medical model and use medicine for what it is good for: ameliorating symptoms of illness, and things like that, instead of deciding to agree that entire ways of being "Other" should be branded a sicknesses that need to be cured out of existence.

      It is currently considered gauche for adults to bully children (though some inexplicably do it anyway). This may be why they bully each other so readily. When the person with disabilities grows up, it is a good idea for him or her to be prepared to take on this bullying, denial of basic rights, dehumanization, etc. As a parent, it is a good idea to give your children self-advocacy skills with all your might, which includes modeling them yourself. Don't let yourself be bullied. If you need help from the Autistic Community, give us a shout-out, and we will have your back.

      My favorite books about the above are Foucault's Birth of the Clinic and James Trent's Inventing the Feeble Mind.

      I mention these and wrote this whole answer as another way of saying that these lies have been going on for ages, and parents have more power than they think, and I love it when they use it against wrongness in the establishment instead of against each other.


  2. Hi Ib,

    I stand with you. I think I've already made the "leap" without realizing this was even a leap.

    I was influenced by a series of documentaries including one mentioned by Ariane (she told me about Laura Nagle's "vectors" DVD). I watched Loving Lampposts first, then Vectors DVD and looked for where I "calibrated". I also watched a documentary called Refrigerator Mothers, to better understand where these autistic adults are, more than to watch the origin of the Refrigerator Mother theory.

    I do this because I am looking for autistic adults. I'm interested in how they live their lives, I am looking for their sense of satisfaction with their lives. I find that for the most part, I feel concerned with some people's ability to keep making a living, but then I realize this is no different from what most people confront. Er, I mean "neurotypical people".

    I see where we are as a society with autism as not too different from what we were with homosexuality 50 years ago, and cancer 100+ years ago. It's going to take time and a lot of advocacy and awareness, and progress occurs when we take more steps forward than steps backward.

    I use "shedding the diagnosis" as a method of communicating something I'd written about recently ( Ultimately, I think the diagnosis itself is a LIE, but it is a framework for society to quickly "size up" individuals for survival purposes. I also believe that there are humans who make thinking leaps or transition through phases of philosophical evolution so quickly they appeared to have "leaped in a single bound." However, many humans tend to take a longer time through each phases of thinking, and forcing them to leap before they are ready is akin to stripping a rose bud off its stem and wondering why it has not bloomed: I've made this mistake enough times to realize this holds true for many people who desire change but who do not change at the same rate.

    I do find usefulness in behavioral intervention, thus provide this to my child, as part of my belief that it is a method in learning skills for social pretending. These skills do make somewhat easier "life" in general (thus all who live in society autistic or not use the same social pretending skills until we live in a society where social pretense is less relevant for "general harmony".) However we are also the parents who do not believe in what is considered "intense" amounts of hours, we believe in downtime, and we believe that behaviors labeled as "stimming" serve a purpose and that purpose may have a communicative function.

    The tricky part I'm navigating is that I'm projecting that what my child will subscribe to and believe in, is what I'm subscribing to and believing in. I have a tough time balancing disclosure with advocacy, because my child is young and I cannot guess how he prefers to navigate society. I've listened to talks by adolescent and young autistics who appear to "blend in" and neither of them choose to disclose. In fact, the teen even said he does not want to hang out with other autistics because he wants to learn from "regular people" and he does not want his peers to know he is autistic. Then again, this is part of pressure for peer conformity of adolescence and maybe he will change his mind, or maybe he won't.

    I'm going to stop abruptly here since my comment is already very long and discussions like this one can go on for a long while ;-)

    Thank you Ib, and looking forward to reading more and learning more.

    1. What you are talking about with making choices while your kid is too young for you to know what is going to be his choice... I feel that too, because we have gone through that in another way... this will sound like kind of a joke, but bear with me, because it is not a joke, it was a cultural reference. We have two baby sons, and we noticed each other singing to them a lot, and they are quite musical. Also, we are gay, i.e. the boys have two mothers. At one point we looked at each other and wondered, is this OK? If they are too musical will it make them seem gay even if they are straight? There is a 90 percent chance that they are straight. But then, to make ourselves kind of snap out of it and feel better, we thought of a couple of straight men we know who are actors with beautiful singing voices, and one of them comes from the most surprising family of everyone being lawyers and you would never in a million years predict a musical actor coming from there. So to make a long story short: I do know that feeling, and I also think we don't really "make" our kids to that much of an extent. I think the idea is super stressful. In many ways our kids will make themselves with or without us.

      Also, from my own experience now.

      As a teenager, I felt like those teenagers, longing to fit in with regard to my "intensity" and "weirdness" and etc. etc. etc. (autism), and now I feel the opposite way, which actually happened quite recently for me upon discovering the community. This was for me one hundred percent due to how much society allows. As a teenager, with respect to the part about being gay, it only took me a year or so to feel free to show up in a suit and tie with an openly chivalrous demeanor. That was "weird" too, but I had heard of Gay Pride for a few years and had older role models with good lives.

      Also, I think it is great to provide as many skill options as possible. There are times in life right now that I am glad I know how to do whatever I want with my body and face and voice. For me, the key is Theater. Watch this space, because I will be writing more about the Awesomeness of Theater.

      Last but not least: that thing they tell you about You Have To Get Everything Done Now Or Your Kid's Mind Will Expire Or Petrify And It's All Your Fault!!? That's a Lie. Yes, I have seen the neuroplasticity studies in graphic detail. I have met the people who have done them. The true interpretation of this is that it is *easier* for toddlers to learn new things. I think we have all noticed that we are better at speaking languages we learned as children than those we took as college subjects, that bilingual children speak all languages more awesomely than we do, and things like that.

      But when I just told you I learned amazing amounts of life changing information from Theater, I was referring to my undergraduate minor. And I did not even go to college right after high school like you are supposed to. I waited some years to get used to the idea. Your brain is Very Plastic when you are a baby but it it NOT NOT NOT let me just say it one more time NOT immediately ossified at the age of whatever just because you are Autistic. We are lifelong learners too, and you don't just have a tiny wee window with your son, you have a lifetime. And I love LOVE LOVE LOVE loved your blog entry about pretending, I loved the way you wrote to him. It makes me think he will want to talk to you when he is a grown man, a lot. I am going to call my mother now. I love my mother. xx


    2. I am a big fan of improv classes -- I took a few months of improv classes when I was in my early 30s and it made a huge difference in my comfort with uncertainty. I'm a major control freak and it was suggested to me by someone who thought it was good practice for how "not in control" we are for most of life.

      I also felt like I matured and grown as a person in staggering leaps in my mid- to late-30s versus when I was very young, thus don't buy into that "it's over once you're past 5 years old." I've had someone tell me that the window of intervention for speech closes at 5 years old... and my child was already 4. Needless to say this FREAKED me out and I blamed myself for "not knowing and now we may be too late, not knowing what we didn't even know, etc."

      This is probably one of the most horrible lies the parents are told, constantly to their face. This fear that we've lost that window of early intervention is what makes some of us crazy (and I don't say "crazy" lightly, but it really goes to this extent in some families) and our entire lives are basically run on the assumption that we are literally FIGHTING FOR OUR KIDS' LIVES.

      Whew... had to get that out.

      Now -- I'd love to know where I can start looking for community!

    3. Do you mean face to face? Because online, you got it! You're with us now :D. Ib

    4. That's a good question... yes, face to face -- and hooray I'm here online learning from you!

      Which brings me to a topic that has baffled me plagued me given me sleepless nights and sometimes nightmares that's right I AM TALKING ABOUT SOCIALIZATION AND SOCIAL SKILLS!

      I would love love *love* your view of what I've been told repeatedly in the past: social skills are critical for our children, social skills improve their speech, being with peers is how our kids imitate typical kids (earning their "pass" privilege I suppose).

      I'll be honest, I come from an era (and also not of this culture, originally) where we didn't do play-dates. We didn't have preschool. My mom wasn't even sure she wanted me in kindergarten if I could start 1st grade, and primarily for academic reasons -- NOT for social skills.

      My argument is, "why should I care if socialization comes from adults versus peers (kids my kid's age)? After all, adults have better social skills than kids -- it makes sense to me to have my child interact more with adults if this is where he's comfortable and he will learn social skills from people who have learned social skills. What's wrong with waiting until my kid's peers are beyond the age where they solve problems with physical action and change their moods 25 times in 15 minutes a.k.a unpredictable preschoolers?"

      I don't get it. Please help me -- my brain is just not clicking on the benefits of socialization for very young children when it can be so stressful for those children.

  3. (of course as soon as I posted I realized my analogy with the cancer perception is sloppy, because cancer is a disease model. However I was thinking along the lines of the shame and blame that came with it a hundred years ago.)