Saturday, May 30, 2009

What makes the language of people with intellectual disabilities different than typical language?

I've been reading a lot of Michelle Garcia Winner's stuff. I went ahead and bought about $150 more of her books to use this summer because she's so amazing helpful in understanding what exactly kids with Asperger's and related conditions miss. We tell kids to make eye contact but we never tell them why, for instance, so she has a simple unit about how eyes work and how we know what people are thinking about by where they are looking.

I've just spent a weekend with my Special Olympics team at the State Outdoor games. There were two elementary aged students, two or three high school students, and the rest were young adults (in their 20s, I imagine). My brain hurts. I was constantly overwhelmed by the barrage of language, language, language. Questions, comments, more questions. My previous experiences have been with mostly non-verbal kids, so on one hand, I am profoundly grateful for the squealing, singing, questioning, and pointing out of every store on the 5 hours there and back. But it was also overwhelming. I'm just lucky I'm not the coach – she was constantly barraged by "Hey, look coach!" or "Mrs. __________, where's the bus?"

Since I'm going to be the speech implementer for a fair amount of these athletes during summer school, I began thinking in terms of pragmatics and why the language of these guys was so constantly overwhelming to me. I came to several different conclusions about what marks the speech of these kids and people with intellectual disabilities as "different" and how to teach the skills to help these guys get along. Because, let's face it, if I am overwhelmed to the point of meltdown and this Is my job and my love in life, people without this affinity for my kids will dismiss and escape from them much more quickly than they deserve.

The absolute most important underlying difference is perspective taking in communication. This is well documented in Garcia-Winner's work with people with social-cognitive deficits. Her work focuses on metacognitive strategies for individuals with average (and in many cases, above average) IQs. I think it can be adapted to work with people with mild and moderate intellectual disabilities. "Thinking with your eyes" is a skill that could help with every other difference I've noticed.

One of the most noticeable differences in communication that worked on my nerves this weekend was volume. The ability to look at a situation and know whether it required a small voice of a big voice is really absent in many of my communicators when they are excited. Interestingly, my "yellers" mostly failed the hearing screen.

Another big difference is the urgency of the communication. Every observation, question, or thought that comes to the mind of some of my kids is out of their mouth before they look to see:

  1. If the individual has access to the information

    (like, "Coach, is our bus here?" when I'm in the same room as them and cannot see if the bus is here. )


  2. If the individual is doing something else, talking to someone else, or even within earshot. When the coach is trying to get us to breakfast, it's not a good time to ask about supper. Some communication takes priority over others. Similarly, if you are in the back of the bus, you can't carry on a conversation with the coach in the middle of the bus without deafening everyone in front of you.


  3. If the individual needs that info or can see that info for themselves ("Look coach, choo-choo train!" yes, a girl in her 20s said that. But that's followed by the guy behind her "A post-office. Hey coach! It's a post-office." 5 hours up and 5 hours back.) Or if the individual already has the info. For instance, opening ceremonies, police officers carried the torch in. I'm watching and get tapped on the shoulder by someone saying "Hey look! Police officers!" without seeing if I'm looking at the officers too.


Another difference is the persistence of the communication. In the above example, a typical communicator might say "Cool! Police officers!" and drop it there – sort of a comment to no one in particular, but to any partner in the vicinity who wants to pick it up and say "awesome! They have the torch!" This isn't really communicating information but communicating feelings about the information. But in my case, this gentleman pounded me on the shoulder until I removed my eyes from what I was watching and turned my attention to him to say "I see it too," acknowledging that I received the information from him when I could get it from my eyes.

A final difference is asking questions as a way of interacting, even when the answer is obvious. We all do this to some extent and comedian Bill Engvall has a whole routine built around it called "Here's your sign." Example, I'm potting flowers in front of the house and a family friend walks by with fishing poles. I want to say "Going fishing?" but I stop myself just as he asks "Planting flowers?" It's a way to start a conversation and also acknowledge that you see the other person engaged in something fun or unusual.

But my athletes could take this to a new level. 4:30 am, I hear a familiar "What'cha doing?" in my ear.

"Sleeping!" was my not-so-gentle reply. "Get back to bed."

This was constant. I paid for a massage at the massage tent. I have my eyes closed, blissfully away from the heat and sweat of the track meet. I hear one of my athletes: "Are you getting a massage?"

"No" I say. I was pretty grouchy this trip.

I have often broken communication down into three purposes: social closeness, information, sharing wants and needs

Our kids use information exchange as a substitute for social closeness and sharing wants and needs. Instead of saying, "I like Hardees," they will say "Look, it's a Hardees!" Asking for information is also a substitute for social closeness. All of my kids constantly ask where the other one is going and what the others are doing. I often say "ask them." But it's really a way to affirm social closeness and not to be left out of the group.

I work my butt off with vocabulary, receptive, expressive, semantic, syntactic, etc. skills on my kids with intellectual disabilities. But I only really teach pragmatics to my kids with autism and related disorders. I understand why their IEPs are that way – at the beginning, when someone with an intellectual disability begins school, life, speech-language therapy, etc., we just want communication and don't care how we get it. It's hard now, as a middle school implementer, to start shaping communication to be more pragmatically appropriate. It feels like I'm stomping on their individuality. But I'm understanding that for verbal adults with intellectual disabilities, pragmatics are the most important skills for their success in the community.

Also, the lack of content in the speech of adults with mild intellectual disabilities is something I've noticed before. One young woman in my previous job would always talk about the same things at every respite: how good the food was (and it usually wasn't! but she was overwhelmingly complementarily to the cooks), how much fun she had at work/the last dance/the last respite, etc. There were never specifics.

Lack of content in many cases is a simple lack of experience with the world. And some is a lack of perspective taking: what makes people laugh? What makes them just nod their heads and say "uh-huh?"? My friend M, with her left hemisphere removed (which is the language center in most people!) had a really sophisticated communication style and loved in-jokes, word-play, puns. She delighted in things like that and that made her fun to be with. She understood that shared experiences and shared jokes (like naming my car "Mary" and then always referring to it by name) were the type of specifics that build social closeness, not just information or generalities. This is another skill that we need to build in people with intellectual disabilities – what experiences are unique enough to be interesting to a listener? (hint—every post office for 300 miles is NOT that interesting).

A corollary to that is that our guys must have lives that provide content. THAT'S the big challenge. How do you teach someone to speak in specifics when all their days are the same? Kids with disabilities get less experience with the world than their typical peers, but need more.

J.C., who has Angelman Syndrome and is non-verbal, is a pro at this. She will remember a shared joke for years and years and will "repeat" it with a gesture or a sign, like an imitation of how someone sits or stands, and even that disapproving sound my grandma makes. J. knows how to pick out the funny and the usual and use it to "talk" about. Still, though, she can repeat it over and over because lack of access to other content.

My conclusion is that pragmatics and perspective taking isn't an "after the fact" language add on but something that needs to be built in from the beginning. As an important part of those pragmatic skills, we need to teach, and more importantly, provide access to things to talk about.

2 comments:

Erin said...

Hey Lesley,

This was so interesting to read! I've noticed the same thing in adults with ID I have met and talked to. I'm not versed on all the speech therapy language but my response reading this was as the mother of a 2 year old. My 2 year old's speech is virtually identical to the speech you describe in your athletes. You could substitute "2 year old" in almost every phrase. I think a lot of this is developmental. I also think (based solely on my observations of the professionals who work with Maggie) that speech therapy often heavily focuses on "I" statements and spends far too little time on conversation. Kids are rewarded for making requests and making observations but are taught in speech therapy to have conversations with adults rather than with peers. I just don't think you have the same conversation with a peer that you have with adults. Anyway, if Maggie's communication training stays on the course her current SLP has set, she would grow up knowing how to request, demand, and identify things but not learn how to listen to a communication partner express herself and then exchange thoughts. So I think a lot of what you are noticing is adults whose speech is developmentally arrested at a young developmental level and that this is very possibly in part because of the way professionals have interacted with them and taught them. Anyway, that's my take on it, and I might be way too harsh on the educators and speech therapists in these kids lives, this is just my own observation of what happens with Maggie!

Lesley said...

I agree with you and really, when someone is nonverbal, all we think about is survival. But when I was tutoring Jessie last summer, it occurred to me that I was using the "survival" mode of communication teaching with her but really, she had a fair amount of survival skills -- more than anyone else with AS that I've ever met. She is almost fluent in ASL and is limited in content more than in ability, just like my athletes. Her next big hurdle was the pragmatics of communication, how to be a communication partner, how to take turns, listen, and judge the urgency and the appropriateness of the message.

J.C., although WAY more limited than Jessie in her communication skills, still struggles with the same thing. She wants to sign a shared joke over and over. When she has access to her device, she does the same thing. It's a lack of content and access to content issue.

I agree with the language patterns being typical preschool or toddler patterns. And I agree that professionals focus on "skills" but not pragmatics. But it kills me to take my very verbal middle schoolers who are so imaginative and funny and start to stomp on what's not age-appropriate. For instance, one child with ID would dream up wild fantasies, usually involving a dance recital with Mickey Mouse, and tell everyone about it as if it were fact. He was telling this to students he didn't know, or walking up to girls in the hall and saying "I work for the FBI." You can imagine their reaction. I finally had to say "people who don't know you think it's weird when you do that." It killed me but he understood right away. He still talks about dancing with Mickey Mouse, but in a such a way that everyone knows he knows it's a fantasy -- "I am pretending that Mickey Mouse will come dance at our school."

I understand why it's so hard to teach pragmatics because you are taking the values of the larger world and imposing them on people with ID and it just feels so rotten. But being on the bus for hours and wanting to scream reminded me of the consequences of NOT teaching pragmatics.