Dear Tina and Everyone,
This is a very important and significant question or sort of set of questions, and I deeply appreciate Tina for taking the time to be so open about it and for the fact that she is really actually asking. So it took me a long time to think about and write about it and do my best to do it justice. Sorry for the delay.
Below you can see some of our clarifying dialogue, and then I will go into the ideas I came up with.
I hope what my brain came up with thinking about these things is some kind of useful to someone, especially Tina and anyone with similar dilemmas or similar kids, and I would also like to invite other people to chime in with helpful ideas that are also respectful of the dialogue and all those taking part in it (multiple perspectives are interesting and useful; bullying and trolling will straight-up be removed).
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 dont' 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.
Dear Anonymous, thanks for writing!
When you write back please feel free to give yourself a pretend nickname to sign off with so I can know that it is you and you will know who I am talking to when I talk to you. 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: http://tinygracenotes.blogspot.com/2012/10/a-person-is-not-function.html - so I will do my very best to answer well and in a balanced and nuanced way.
All the best,
Hi, I'm Tina. I'll tyr to answer your questions. I'm glad you asked all these questions. I dont know how many I can answer but am tyring 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. 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 a lot of people have depression these days and they screen you for free and 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, if that is you, which again I don't know, but it could be, and it might not be such a bad idea to check, just in case, why not?) 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 think this might be a thing that will be a thing that I want to tell you 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 with the way they seem to be looking at things, 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 shockingly, 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 me and him 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. (Hi Shannon Des Roches Rosa, I hope you see this! I don't think I can tag you but I wish I could! I am writing that I love your word!) 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. You can see in the article if you click on it (it's a good one) that the idea is controversial, but it is still useful as a framework. 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,