Tuesday, October 23, 2012

Labels; Also, Intense Teaching is Realer than "Cure"

I have a question. I have a severely disabled son. He is nonverbal, is still in diapers, has self harming behaviors, hits himself in the face repeatedly and eats with his hands. I doubt he will ever progress to the point of living independently. I just can't imagine that ever happening as he's already 12 years old and only in the last year has he indicated that he understands what I mean when I ask him if he wants to go outside for some fresh air. 

I get really tired of people saying how labels are bad. I mean when anyone sees him they get how tough it is and they use words like severe and low functioning, and they're right to, because he is. I don't see how that's a bad thing, it's an honest thing, from my perspective. Also people who seem so dead set against labeling are either able to write down their views (something my son cannot do) or they are parents of kids who are much farther along than my son. Truthfully I don't really care about the labels, but I do feel upset when people make such a big deal about labels, when it's really clear the severe label isn't one that fits them. 

Also I'd like to see something that would make him able to go to the bathroom and not have to wear a diaper, use a utensil to eat his food and speak. If that's a cure, then I'll take it, if it's something else, great I'll take that. But I'm sick of everyone arguing about this stuff when they can WRITE and TALK! 

You seem like a reasonable person. I'd love your views on all this. Thanks. 

Thank you for the compliment of saying I seem like a reasonable person :) 

Your question is interesting and very current right now. It is something I am indeed ready to talk more about and would like to think about some more. But before I do that, it is important for me to make it fit better with your family by knowing more pertinent details about your son, if you don't mind my asking. You will notice I almost always ask to know people better because I don't think what they cannot do gives me a good enough mental picture, enough to hold onto in my mind to feel like it is really possible for me to be able to talk about a person. 

So your son, what does he love? What are some things that really seem to interest him or hold his attention? Another thing that I found really fascinating is that he recently started indicating that he knows what you mean when you ask him if he wants to go outside for some fresh air. How does he indicate this? And is the answer usually yes, or no? Are there other things he indicates to you? Are there things he can't stand? Things you can predict he would gravitate toward? I would just love to hear more about him, whatever you can think of that you don't mind telling me. 

Then I will honestly tell you my thoughts on labels. And I do appreciate you taking the time to ask me about them even though I am a person who can write, and has written this: 

So I will do my very best to answer well and in a balanced and nuanced way.

All the best,

I'll try to answer your questions. I'm glad you asked all these questions. I dont know how many I can answer but am trying to answer them. J likes pizza, it's the only thing he'll eat. He strips the cheese off, eats that first then licks the tomato sauce off then scrapes the soft doughy part with his teeth and leaves the outer crust and what's left of the underneath part of the pizza. 

Let's see what else... Okay, I think he likes being with us, his family, me, my husband and his brother, although his brother is older by two and a half years (just turned 15) and they don't play or anything. J likes Sesame Street and I guess maybe Elmo. 

But J is really unpredictable and is becoming more and more angry and violent. He hit his brother the other day in the face. We're all a little scared of him, to be honest.
The school called us and asked what they should do when he runs out of the classroom, often screaming. He also hits himself. Did I mention that already? 

He likes going down the slide at the playground. But mostly he wants to be alone or is angry and makes this kind of screaming noise.

I know he likes going outside because he smiles when I ask him. He doesn't smile that much any more. He doesn't like it when we tell him he has to do anything, like get dressed or brush his teeth. He lets me brush his teeth but if I try to get him to do it, he starts hitting. 

I guess I feel sad all the time and hopeless. I'm just going to be honest with you, because I don't see how this is a good life for any human being. I mean no one would ask to be this way. No one would "choose" to be like this. I think he feels that way too. We try. We love him. We wish we could do more to help him. We wish we could communicate better with him. But it's exhausting and my husband and I both have to work, so he goes to this school and is in a classroom for Autistic kids. They say they are working on a goal of toilet training him. They've been working on that goal for awhile.

Yeah. so I guess that's it. 

I did read that thing you wrote about your friend. It's good he has you as a friend. But really, who would choose to live like that? In a group home, dependent on other people? So yeah, when people ask, well how autistic is he, I say, severely, because what else am I suppose to say? I mean I'm not going to say well he's in diapers and hits himself and gets violent and stuff. 

Like I said, if there was a cure or a pill that he could take that let him have friends or be toilet trained or eat other foods or not be so angry I'd give it to him in a heart beat. I would. I don't think that make me a bad parent to want that for my son. I love him. I do. But I hate that he can't do so many things. I don't blame his "autism" or whatever, I don't even know what that means anymore. I just hate seeing him like this. 

Dear Tina, 

There's more than one thing going on here. The first thing you asked about was labels like "severe" and "low-functioning," but then I think you were asking about other things like teaching, how to help him, and touching on feelings of hopelessness which are understandable especially since you are working so hard and he is smiling less now and acting more aggressive and unhappy than he was before. But he just recently started letting you know he was happy about going outside with you, so there is light...

One of the first things that just jumps off the page at me is that throughout all the pain and confusion and desperation (and maybe even depression, though I am not a clinician, but when you have clinical depression and you get help for it that is one piece of extra weight that can be lifted off your shoulders, and it might not be such a bad idea to check, just in case) you are a woman who loves her child very, very deeply.

 Love is the realest thing and it can be real in any kind of unreality or harshness or whatever. Love holds. 

The weight of the world is crushing you like flat right now, I can hear that in your voice too -- but your love for your child leaps off the page in 3D relief. That is an uncrushable thing, invincible. It will keep you strong forever even if you don't know it. Harry Potter's mom doesn't really die, I really think she doesn't, and can Harry Potter be destroyed? No, not in any way. Why? His mother's love.

I want to talk about teaching before I talk about labels because although labels are super important and a great thing to talk about, and I am so glad you asked about them, the fact that teaching is not the same thing as curing (which is this fakey kind of lure they hold out to tantalize people), and that teaching really exists, and better teaching can happen -- I want to tell you about this sooner because of the weight on your shoulders. You don't have to wait for the "cure" (which is sadly likely to be more like prevention, and hence completely unlikely to be of any help to your family or anybody's family at all unless the prevention of families is considered helpful) for things to become easier and better in day to day situations.

J's teachers are, under the law, doing something called FBA-BIPs which mean Functional Behavior Analysis/Behavior Intervention Plans. If they are not, they need to be, because he is hurting himself and scaring you. If they are, they may need some help doing them well, because they are not working well right now.

 (Note to other people: If you are a person who has to write FBA-BIPs and there is nobody to help you, you can also write in to the question box and I will welcome you with open arms. Either I will find you help in your area or I will help you, but make sure I have a lot of lead time on your deadlines because chances are I will not have a fast turnaround and also the data collection I advise will also not be that fast.) 

When someone has trouble communicating well, he or she is likely to "act out" the message -- like in charades. Imagine you have walked into town to get a can of petrol or gasoline in a country whose language you don't speak while your husband waits at the side of the road with the broken down car. You suddenly notice they don't use gas pumps there. WTF? How are you going to get this across, what charade can you even do? You begin to panic -- wait, all you have is two US dollars ... Now imagine this is your whole life. A good analysis of the function (or, as I prefer "meaning") of a "behavior" works to get to a translation of what the person would rather be saying instead of doing that, if only he or she could. Another way of thinking about this that helps some people is, what would it take for me to do that? A good behavior analyst doing a FBA seriously needs to ask the kid's mother as part of the data collection consideration array, because who can interpret better?

So here is what it should look like: There are a list of things that are really important that would make J's life much better if the world knew what J was trying to say when he does that. The teacher or consultant who is doing the FBA (with your help, or asking you to also do one) is marking down times when these things happen, with details, to get a feeling for all the surrounding events before, during, after. A pattern should emerge, so everyone really knows what might contribute to making the "statement" occur. 

The BIP is the part where it is called a Behavior Intervention Plan. Traditionally, this can be a token economy (bribery) etc., but honestly, this doesn't always work the best with Autistics because they might not get the point. What does work is getting them to buy into it for real so that they get the point and are on your team because they get that you are on their team. They see that their life will suck less when they have a better way of being understood, because you have helped design one, and lo and behold! It actually does work a lot better. 

So say like the FBA shows a pattern that J gets aggressive and loudly hits himself when he needs a break from people getting in his face making demands. The new way he can learn, as an example, but this is one I teach a lot of, is to make the "hands up" gesture between his shoulders and ears that almost everyone can read as "Hey, man, can you please back off for a sec?" and when he sees how everyone backs up for a sec instead of having a giant panic attack he will notice that the gesture is a better lifestyle than the aggression, because the aggression really seriously just causes a bunch more noise whereas the gesture makes people step off, so hence it is truly a better solution to the "people in your face" issue. Does that make sense? It is really, honestly a real improvement in his real life. He can learn it because there is a point to it. 

If everything on his FBA/BIP has this feature I am seriously serious that it will have more of a success rate because he will see the reason and have a purpose for being motivated. This is slightly different from traditional behaviorism because it takes his agency as a human with wishes and desires into account, rather than thinking of him mechanistically as like a behavior-machine, so you may have to explain it to the people working with him at some length, or print this and take it to them, just so they see that one secret twist that may have differed from their training and education that makes the whole thing work better (and by the way it also makes it more morally decent, but that is another story).
Also from liking to be outside and running and going down the slide, he might love the feeling of wind on his ears. I love this feeling. He might love it if he is on the front of a ferry or riding a bike or running track or in the car with the window open. If he gets a lot of this feeling in life he might smile a lot, especially if he knows a way to get it on purpose other than running screaming from the room (which I do not know if that is why he does that... it might be the people in your face issue ... you can tell when you track when and where he does it ... it might be both). People do learn to communicate more and more in ways that work better when they find out it works better. Nothing succeeds like success. 

I think there might be a positive feedback loop situation when he learns some better forms of communicating at school and then hence also you yourself get happier and less stressed. In my imagination because you love him so much he is probably also aware of your mood and wishes you felt better but doesn't know how to communicate that. This is not like me trying to blame you for how you feel but just to let you know that J cares about you and when he sees you getting happier if he puts 2 and 2 together with that he will also get happier and that will just be another motivator for him. I think he loves it when you brush his teeth because that is you touching him and he just loves being near you. Maybe if you put his toothbrush there on the sink and brush your own teeth there too and he can copy you parallel in quiet he might like that, like a ritual you can do together. Could be worth a try. 

Think about J's smile and think about how totally real and happy it is and pure, when he is happy. I don't think he is going around thinking about being dependent that much, just guessing, especially not on you, because that is just him being with you. Speaking of the concept of independence, and how it is a concept that not everyone has that much of a priority about, I want to talk about Eric, so. 

Let me talk about Eric for a minute and then get to labels in general. I knew Eric when I was in grad school and at the time I considered him to be happier than me because he was laid back and doing his thing whereas I was trying to negotiate all these situations where I did not fit in and had no idea how to act. In a lot of ways I was bugging out and that is why I went to see him so often because his happy mellow beach dude energy was extremely relaxing. Then I got into this living situation where I did not have my own transportation and could not visit him whenever I wanted and I was seriously ultra bugging out, and it was a nightmare and my anxiety increased a lot. There were no situations where I could just seriously just BE and know that the person I was being with would completely understand the concept of doing that, of doing, well, nothing. I do have a friend like that in Seattle but Eric was it in my grad school. There's trade offs like he has these noisy roommates whatever but the state pays his rent and he lives AT THE BEACH I mean he is this beach guy with a pretend job and the economy allows him to live at the beach in Southern California, and he just walks away from his roommates, because it really never rains there, so why be inside? Yeah Eric knows what he's doing, he chooses. 

Which brings me to labels. The reason I am not in love with them is because they are so context-driven. Eric is probably considered "low-functioning" because he has a fake job and lives in a group home and hardly talks and can't write but during that time period when I lost touch with him I had, because of my "high-functioning" lifestyle, an anxiety attack so bad I thought it was a cardiac issue and was admitted to ER because my blood pressure got so high (my resting blood pressure is on the low side). Everything was becoming absolutely terrifying. Slightly later, I was in horrific pain because I needed surgery, but I did not realize that the pain indicated a need for surgery. It was just something I didn't like. This lasted for some time. At some point my mother noticed on the phone that there was something wrong with me and told me to come home so she could check out what was going on. I did, and apparently it turned out to be a life-threatening situation that was also apparently kind of obvious, but again, with my time agnosia and various "spacey" aspects, I overlooked the danger. Fortunately, my mother was there to get it taken care of, and I lived. Long live Moms. :) 

So now by the grace of God I am happily married and hence if I were to need life-saving surgery, my wife, who is a nurse, as is my mother, would notice this detail. They sort of gang up on me. :D. So, but also, if Eric and I were on the beach itself instead of on the cliff, and high tide were rolling in, and we were on the wrong type of sand bar, he was the one who had it together to know that, not me. No matter how much of a professor I am now and he lives in a group home and I am writing and he is probably thinking about the waves and smiling for no apparent reason, even though there is a reason, since he is thinking about the waves, which are smile-worthy, he is the one that has it together to know how not to drown, not me. So that is kind of what I am talking about, about context. I could be drowning, and Eric could be saving my life. Is he low-functioning and I'm high-functioning then? Just because when he and I both smile for "no reason" I am the one who can answer you when you ask me why? 

But I understand that you need a thing to say. I get that there is some kind of difference, and also that it is important to be able to talk to people, and not have it take seventeen hours of TMI. That is logical and I do know what you mean. Also I get that I feel a real kinship with Eric, if you saw us together, we wouldn't seem that different, and if I could meet your son we would probably be able to relate at some type of interesting level. You would be like, huh. I am not sure why this is, but it has been happening for years. First I want to suggest a thing to say and then why I like it and then why I don't like the others and then talk about Pascal's Wager as a reason to be careful and use the thing I like which is value-neutral. 

Here is the thing I like, which is value neutral. I got it from Shannon Des Roches Rosa, who wrote it about her son: she said he has "high-octane autism." That just really appealed to me because you get the point that it is a big deal, but it doesn't sound like such a bad thing. It kind of sounds, you know, race-car-ish. In fact, it might even be a little on the awesome side, if her son were to overhear. On the other hand, it's not like other listeners wouldn't get the point, you get the point, high-octane. Not wimpy. Serious. 

So apart from the "severe" and "low" and "high" labels being inaccurate sometimes because they change during context changes, I also don't love that they reduce people to "functioning" like a human is a human doing rather than a human being. We are meant to BE. That is what makes us worthy, not high or low. But the A Number One thing I dislike is that people might overhear and feel heinous about themselves. This has happened to a lot of people I know, and it is just not worth it. 

Sometimes it seems like No Way Can He Hear And Understand Anything. Or maybe you didn't think that but some doctor or speech pathologist or psychologist or psychiatrist told it to you for an alleged fact, and you were like, well, guess they are the Expert. But I don't think the risk is worth it. 

So my way of thinking about this is based on an idea made up by philosopher and mathematician Blaise Pascal called Pascal's Wager to see if it would be a good idea to believe in God. Basically it is that you picture all four scenarios, and here it is filled out for positive and negative language and the kid understanding you or not, with the outcomes:  

To me (and also to Pascal, which was his argument on why we should believe in God) even though the two situations on the far right have nothing happening, and that's 50% of the likelihood, it's just not worth it to go there because the lower left is so much worse than the upper left that you are kind of forced by reason to choose to believe (or at least kind of act like you believe, or hope anyway) in the conditions of the upper left, being "Kid understands words" mixed with "You say Positive stuff." Remember, many people who can write did not learn how to write until later in life and to this day are what I am going to call High Octane :) 

Does that make sense or help at all? Now to me, I think High Octane is the perfect solution because it totally sounds positive to me or a kid, nothing wrong with it, my awesome car takes High Octane, but at the same time, the listener can totally tell you are not talking about some wimpy situation of a nerdy professor such as the writer of this blog, even though the writer of this blog may drown or get hit by a car or not understand the need for surgery or whatever it may be ;). 

Tina, thanks for your patience. I hope I was able to help on the FBA/BIP stuff. It should really work fast if you run it by the teachers, the violent running yelling hitting stuff should get toned way down when he is understood, especially if you help them. The toileting is different and I will need to look into that some more because making that matter to someone when it doesn't yet is a whole new kettle of fish so I want to open that up to other folks who may have had success, and also I will ask around. Anyone?

(Most of all, seriously remember Love Prevails and J loves you and the whole family.)

All the best,



  1. I recently compared my son to a Ferrari, but everyone was handing out instructions to Fords. So I love Shannon's high-octane description.

    And I love your focus on what Tina's son loves. My son is verbal. Even now, I focus on what he loves. When he communicated via gestures, smiles, cries, and echolalia, I also focused on what he loves. It started easy: with games like he opens the door, I'd say a big cheery "hello!," he closes door, and a big sad "goodbye." He loved doors. We had a game.

    I am passing friends with a non-verbal nine-year-old. I figured out quickly that she likes puddle-jumping and songs. She's a ton of fun.

    Everyone has something they giggle at. Just like you said, if we can find those things they love, no matter if they are autistic or not, verbal or non-verbal, that's a happy life.

    Ib, this was thoroughly wonderful reading.

    1. Brenda, you are thoroughly wonderful reading. And I am delighted to see you mention communicating through echolalia. I want to write an article about that sometime.

      And picturing your game where your little Ferrari opens and closes the door to your bigly emoted greetings is making me smile :).


    2. I agree with Brenda--thoroughly wonderful reading, as always.

  2. I very much appreciated reading your approach to behavior support. I'm not a behaviorally -focused therapist by any stretch of the imagination (I work as a music therapist for variously octane-ated folks), but when people really struggle to communicate because speech is not their main language, I try to make sure we figure out a way for them to say "I need to stop for now" and make sure to respect the request/communication.

    One question for you: in your little chart up there (which you used to demonstrate the Pascal's Wager approach to speaking about people respectfully), did you mean to say "doesn't matter, they CAN'T hear you?" (which is what you said) or did you actually mean "Doesn't matter, they CAN hear you?"

    I also find it helpful to think about the reaction I'm having to the folks I work with when they do something unexpected or dangerous (I try to notice if I'm feeling angry, frightened, frustrated, etc.), and, once I figure out my reaction, I ask the person, "Hey, I'm wondering if you're trying to let me know you're feeling frightened/angry/frustrated/sad/etc. about something by getting me to feel that way." Since we have the luxury of having music, I usually invite them to tell me with the music, because that way I can hear better- whereas, getting me to feel frightened makes it much harder for me to hear very well.

    Anyway, thanks again for the post (and for your blog in general)!

    1. Since it was on the "doesn't understand" side, I'm guessing that it's the CAN'T that she wrote.
      And respecting that request is very important.

    2. Yes. To be transparent about myself, I completely believe that only the left hand side of the grid is likely to be real, but in Pascal's Wager, you give equal probability credit to the side you don't believe, which is to say, I am only for the sake of argument imagining that it is equally likely that the kid totally doesn't understand a word of what you say, can't hear it, doesn't even pick up on the vibe, etc., and so therefore it is a completely moot point that nobody should ever even care about.

      This is a common position actually taken in real life by people who believe that those who do not engage in what they recognize to be expressive communication are therefore incapable of receptive communication (understanding anything). They sometimes go on to say they have tests and other "scientific" means of "proving" this, which I also don't particularly trust because of the people I have met who were alleged to understand nothing earlier in their life and can now tell me about that allegation and its ramifications in a wide range of graphic detail.

      For some reason some of the people who believe in presuming incompetence sometimes feel the urge to evangelically defend their offensive theory to others, even though you really cannot know for sure what is in the mind of another, and as the Pascal's Wager exercise shows, it is a much better idea to presume competence and be wrong (nothing happens, upper right quadrant) than to presume incompetence and be wrong (some devastating potential consequences indicated in lower left quadrant).

    3. Roia,

      Thanks for writing! I think it is awesome that you are helping people figure out how to communicate that they need to stop, which is one of the most important messages they will need in their lexicon.

      Also, I love love love the idea of communicating with music. When I was a youth, I had a heck of a time verbally expressing ideas with content of any emotional complexity until I was around 22 and got some direct training in it, and I only really got good at it in my later twenties in college by getting a minor in theatre and a lot of excellent stage experience (theatre theory for those who are not familiar is actually very internal and honest and helps you know yourself and others and what emotional things are called a whole lot better).

      Meanwhile, the whole time, like maybe my whole life, I was able to relate emotionally through music, though I did not know enough to call it that... just instinctively knew it was my only real chance of getting closer to others other than sports (which didn't work as well after adolescence, when emotion became more of a highlight). I am delighted that you and my friend CJ (Hi CJ, do you read this? I think you are so awesome!) who is doing radical things with music therapy are doing what you do to help people really get into another way of communicating that I do believe might be closer to native.

      Thank you!

    4. Thanks, both Alyssa and Ib, for kindly getting my neurons to fire. I guess I must have run off to get my tea while I was reading about the Wager. Sorry about that.

      It is startling how committed people can be to particular ideas and how decidedly unquestioning as well. Of course, I say this knowing full well there are ideas I am fairly unwilling to change. Sigh.

      CJ and I have, as it happens, met, and I hope to see her again in April at our regional music therapy conference. She is very cool, and I love her decision to present sensory friendly concerts. As a person who travels with ear plugs (much as I hate things in my ears) everywhere I go, I'm most appreciative of people who think to do these things.

      I'm pretty grateful I get to be a music therapist. I've learned some things over the years, and I'm guessing I've still got a long way to go. The folks I work with have long and involved trauma histories, but when they're finally ready to use music, it's amazing and beautiful. My most joyful moment, recently, was humming "Let It Be" with a man who doesn't use speech to communicate. It took us 15 years to get to this point, but it was worth it.

      Thanks for the validation (again, both Alyssa and Ib) regarding making sure people have a way to say "stop now". Sometimes the work of therapy gets complex and communication gets even harder to figure out- especially when there seems to be a lot of ambivalence. But we slog through and do our best, making mistakes and trying again.

      I look forward to reading more of your posts, Ib!

  3. Thank you for taking the time to have this conversation. I'm glad you like the "high octane" description. Another description I use is "he's a 1:1 guy," which IMHO communicates the information people are asking after in practical terms, and also without judgment.

    1. Thanks Shannon!

      Incidentally, for me, talking to more than one person at the same time (well) was a multi-tasking skill learned over quite a while, and it's why parties take so many spoons and were (and often still are) so assiduously avoided. 1:1 indeed! :D

  4. Love the reference/comparison to Pascal's Wager here. Assume understanding, place the wager. The benefit far outweighs the risk.

  5. A great post Ibby. So many good thoughts here. Love the "high octane" description, and the Pascal;s Wager example.

    What I'll comment about in a little more detail though is the use of well-developed BIPs. From one family's experience, these can be incredibly valuable. My son had a very difficult year last year. The team supporting him at school was great. We worked closely with them, and had very open communications back and forth. But despite our best attempts, there were some things that just weren't working. And in our case, not being able to fix those things created a spiral affect, and a bad situation became even worse. He was unhappy. His behavior escalated. His abililty to focus and hold it together in school declined. It was through the use of a BIP that we were finally able to turn things around.

    The school district had a behavioral specialist who worked with the elementary school buildings. The team involved her, and she worked closely with all of us to help. She observed my little guy and how the staff worked with him. Helped identify some things we were all doing, that even though well intentioned, were making things worse instead of better. We identified some of the sources of the problems (a main one being an after school program that wasn't a good fit). We changed after school programs, and implemented a BIP at school with reinforcers at home. It took trememdous commitment from everyone. The first couple of weeks were challenging, as he got used to the plan... and tested his limits. But it was amazing how quickly we started to see the plan working and those changes helping. In our case, I'd share that two of the most important things to make this work were consistency and follow-through. Both of which can be incredibly hard. And as a Mom, it can be heart-wrenching. There were times he would get so mad at me for following through with the reinforcers at home. We went through everything including meltdowns, tears, negotiations (trying to get me to change what I was doing), and ignoring me/or telling me he didn't want me to be near him. But I stayed with it, no matter how hard. Because even though it was hard for me, I knew the consistency was important for him.

    We are still using a BIP. It is modified to address the things that are the greatest challenges this year. And with it, his days are positive and he almost always is able to meet the goals we developed in the plan and earn his privileges (the reinforcers at home). We still have a day every once in a while that he doesn't, but he understands the consequences now. He may not be happy about them, but the reactions aren't as extreme. And all the hard work has definitely been worth it to see my little boy happy and smiling again!

    1. Thanks Lindi {Balanced Imperfection}!

      I am hoping people continue to write their experience and advice to one another here as you have done, so it can be a community forum of usefulness. This is making me very happy.

      The test of a good BIP is whether the outcome is really a better life for the kid, and it sounds like this one is working out that way, with your little boy happy and smiling again.

      But you know, as new of a mother as I am, I feel you on the hard part of it... when I found out that if you pick the babies up and play with them every single time they make a dissatisfied sound they will never get any sleep or naps, and they will become overtired and miserable and be paradoxically unable to sleep at night, I understood the logic, but OH! It was not easy for me to listen to my sweet baby boys obviously wanting me to pick them up and play with them, and every fiber of me also wanting to pick them up and play with them, because come on, I can hear them! However, they soon went to peaceful sleep, and now they are great at taking naps and sleep well at night. It was right for me to learn how to take the long view. But it was harder than... och, I don't have to tell you!

  6. Hello Ib -- I just discovered your blog via Shannon and TPGA, and wow! I've just read this one post so far, and am looking forward to reading the rest, but don't want to go too quickly. There's too much food for thought here just to skim.

    I'll also probably be back with a question or two, sooner or later.

    The "high octane" descriptor is a fine one. The alternative we've used that resonates even more for me is "swimming in the deep end of the autism pool." I can't remember from whom we first borrowed that, but it speaks to my daughter's love of water, as well as a gentle nod to the mystery of the parts of her experience that she does not (yet) communicate to me.

    I blog as JoyMama over at Elvis Sightings, by the way.

    1. How lovely, JoyMama, that you have made a way of speaking it which is so evocative and resonant with your daughter as she is. It gives me a vision and music-snippet of a lovely Mama and babygirl dolphin gliding in the sea off Santa Barbara. The Mama dolphin sings, but the baby, for now, just listens, swimming close and parallel and looking that distant but present dolphin-smiley way. :)

  7. Am nonverbal. People not a friend regularly assume not speaking equals being stupid AND not understanding/hearing.

    Wish to universally un-link intelligence, understanding, and speech capability in everyone's minds all. So much easier life would be then. So rare to almost never to meet not a friend type person not assuming stupid or deaf: http://ari-blue.blogspot.com/2012/07/new-wetsuit.html

    1. Thank you so much for coming and writing, Ari! That is also my wish, and I wish the wish no longer to be rare. Your blog is awesome and I am going to put it on the blog roll of excellent blogs so more people will see what you have to say!

  8. Found your blog through Thinking Person's Guide. I love this conversation...I believe it is so important to presume competence. And even when families have little hope left...to always focus on the positives. Beginning with strengths and strong interests is the way to go. Thank you so much. I look forward to reading more. I also appreciate your willingness to help with FBA-BIPs.

  9. I just noticed that you were also asking after toilet training strategies ... here's Leo's story, some of it may help: http://www.thinkingautismguide.com/search/label/toileting

  10. Ibby, I love how beautifully and carefully you've explained and responded to this mother and many others out there who are reading it. The non-threatening and all inclusive mode of it makes it so welcoming that it would invest the most skeptic in your argument. You are right, love does conquer all and if presented the way you advocated, we will have less crimes committed against our autistic children & autistic adults. Thank you. I love you even more now.

  11. As someone extremely prone to losing skills under stress I have the joy of experiencing at least 3/4ths of the autistic version of the wager sometimes in the same day. In my experience it is pretty rare for people to actually take Pascal up on sound mathematical advice. That is when I am stressed to the point that outward appearances fit with people's opinion of autism no one picks the positivity model.

    I don't believe in a binary system for autistic functioning. I understand why it infuriates someone who's child cannot type if someone like myself doesn't consider myself high functioning but according to the latest tests of actual functioning I am 3 standard deviations below the norm. That means I know people whose much more severe by the usual ways we define functioning in autism kids have grown up to score higher on these particular scales than I do without ever uttering a single word. To the person asking the questions believe me that leaves me a little stumped too and frustrated. (Not that speech has anything to do with intelligence. It does have to an impact on where you score in tests of adaptive behaviour though because they are very focused on can you call for help etc...)

    Frustrated because what it means in practice is often the people who make decisions about me hold the tests side by side and I don't make sense to them either. Too often the decisions made leave me with so little support it is flat out dangerous.

    When pressed at a social event on Saturday for an answer to why change was too hard for me to contemplate something that would be positive in most ways I replied honestly for that exact moment that I have high functioning autism. I had after all come from playing somewhat difficult music with hardly no practice with a group of strangers, and was then sitting and talking and eating with them. So right in that moment if one is hung up on functioning that was high for me. Almost celestial functioning really. Most of the time is not like that though.

  12. Awesome as always. I like to stay away from labels because as you mentioned, Ib, function varies in the moment. To put this in perspective - as a college student I'm pulling a 3.9 GPA so one might say that's pretty high functioning (little self pride showing here). But if all my courses were math, I would NOT be pulling this GPA and can guarantee I would be low functioning. So what am I? A high functioning college student or a low functioning student? I'm both. All humans have strengths and weaknesses. Some strengths are extreme as are some weaknesses. But everyone has both. It's all about the focus and how we use our strengths. I am a huge proponent of using our kids' special interests in all aspects of learning - whether they are on the spectrum or not.

  13. About the toilet training: (and this is my experience only) When we struggled with my son I began to realize that the only two things he could control were his eating and his toileting. Eating was never a problem but toileting almost became a battle ground. When I saw this I set out to change it and GRANT HIM THE CONTROL. Seriously, I had to honestly come to a place where I decided that whatever happened it would be OK. Even though he was non-verbal and I wasn't sure what he really understood, I repeatedly assured him that it was totally his choice -- to use the toilet or not -- but that I hoped he would choose to do it. I honestly believe that whenever we do anything, if we aren't talking about it in terms of working together as a team, if my frame of reference is: I'm gonna get this kid to do X or stop doing Y. It just doesn't work. He has to be a part of it and I have to be OK if he just isn't read to do the thing I think he should be doing. I wrote a little about the potty training thing here: http://daysixtyseven.blogspot.com/2007/10/party-poopers.html

  14. I suspect even many kids who don't understand the words you're using still read the attitude behind the words. If you're thinking "this kid is so impaired, he or she can't X, Y, Z", you tend to react two ways. Either you give up on teaching them, or you overfocus on trying to fix them. With the first option, they notice that you're not asking them to do anything challenging or new - and you get things like the kid tricking you into helping them when they can actually do it themselves (while volunteering with disabled kids, I've fallen for that trick so many times!), or just getting bored or frustrated and misbehaving. Which then reinforces low expectations.
    With the second option, you pressure them to perform, you test instead of teaching, you put too much stress on them and get too upset when they fail. You get faster and louder and more abrupt the more they struggle. And they notice this and get overloaded and stressed out and panicky and feel like a failure if they can't get it right.
    So even if they don't understand the words, they probably understand the actions on a basic level, and that's enough to tell the attitudes behind the words.