One of the standard educational strategies for children diagnosed with ASDs and similar learning challenges is social stories. There is a substantial literature on social stories, most supporting their use and finding some effectiveness. It should concern us that many of the published studies are anecdotal, at best.
Skimming the study abstracts, I am stunned by the number of studies relying on a single child. A "large" study of the effectiveness of social stories included only five students. And then, the recorded improvements are observational and anecdotal. We have no idea if the stories really worked or not. I find little evidence the simple passage of time or the repetition of rules didn't contribute to any observed social skills.
From Focus Autism Other Developmental Disabilities, Fall 1998 vol. 13 no. 3 176-182:
I never understood (and still don't grasp) social stories, examples, role-playing or anything similar. Such things don't make sense to me. If "Johnny" or "Susie" is doing something wrong, tell Johnny or Susie, not me. I've learned to just nod and say "sure" because as I child I got tired of the repetition. "Sure" wasn't a lie, but it was confusing. Now, I just bluntly tell people — tell me what the rules are and don't confuse me with stupid pictures or stories about people I don't know.
I realize that's not a universal, but I seldom get how "other people" think or act, so why would I grasp that some fictional character's motivation is supposed to parallel mine?
When I try to understand characters in a book, it takes a lot of extra effort. I make notes to myself and look things up constantly to understand why a character might do something. When a character turns out to be deceptive, I seldom grasp that until much, much later than other people. Social stories aren't any easier than literature.
Skimming the study abstracts, I am stunned by the number of studies relying on a single child. A "large" study of the effectiveness of social stories included only five students. And then, the recorded improvements are observational and anecdotal. We have no idea if the stories really worked or not. I find little evidence the simple passage of time or the repetition of rules didn't contribute to any observed social skills.
From Focus Autism Other Developmental Disabilities, Fall 1998 vol. 13 no. 3 176-182:
The student was a 12-year-old boy diagnosed with autism, Fragile X syndrome, and intermittent explosive disorder.From the Journal of Applied Behavioral Analysis, Winter 2001; 34(4): 425–446:
This study investigated the effects of written text and pictorial cuing with supplemental video feedback on the social communication of 5 students with autism and social deficits. Two peers without disabilities participated as social partners with each child with autism to form five triads. Some generalized treatment effects were observed across untrained social behaviors, and 1 participant generalized improvements within the classroom.From the Journal of Positive Behavior Interventions January 2006 vol. 8 no. 1 29-42:
A multiple-probe design across participants was used to evaluate the effects of social stories on the duration of appropriate social engagement and the frequency of 4 social skills in 3 elementary-age students with autism. Two students demonstrated generalization to a classroom setting. These findings suggest that the use of social stories without additional social skill interventions may be effective in increasing the duration of social engagement and the frequency of specific social skills.Based on these journal articles, if you study one student, you get a 100% effectiveness. Three students earns 66% effectiveness. Five students, the generalized improvement is observed in 20% of the subjects. In other words, the larger the cohort, the lower the percentage of observed improvement. There are simply too many problems with small tests, including the fact it is nearly impossible to generalize about autism, which is broadly defined, with a study of five students or fewer. You certainly cannot generalize a study of one, two, or even three students. Statistically, that simply isn't possible.
I never understood (and still don't grasp) social stories, examples, role-playing or anything similar. Such things don't make sense to me. If "Johnny" or "Susie" is doing something wrong, tell Johnny or Susie, not me. I've learned to just nod and say "sure" because as I child I got tired of the repetition. "Sure" wasn't a lie, but it was confusing. Now, I just bluntly tell people — tell me what the rules are and don't confuse me with stupid pictures or stories about people I don't know.
I realize that's not a universal, but I seldom get how "other people" think or act, so why would I grasp that some fictional character's motivation is supposed to parallel mine?
When I try to understand characters in a book, it takes a lot of extra effort. I make notes to myself and look things up constantly to understand why a character might do something. When a character turns out to be deceptive, I seldom grasp that until much, much later than other people. Social stories aren't any easier than literature.
I couldn't figure out why they were pushing social stories on my severely autistic one before he understood them. NOW, he gets it... but we had to learn comprehension, how to read etc first. Back in kindergarten... they were useless... now at Gr 4, they explain things to him.
ReplyDeleteWe don't do "Sally or Johnny" we use them to explain a situation. That he has a class with other children for gym - integration. That a child is missing due to illness/Dr's. Situations, that have obviously frustrated him, written down - visual prompt he needs - with his "writing with symbol's" program, and explained using simply language and few words.
Why would you ever use fictional characters to explain something?? It's a good tool, but only if you use it correctly.
As I've learned it, social stories should be written from a first person perspective. ("I keep my hands on my lap on the bus...") I don't think I've written or seen any 3rd person perspective social stories, at least not recently.
ReplyDeletePaige, SLP
Some proponents suggest "Theory of Mind" can be nurtured using external examples. I'm sure the same concept is behind role-playing -- the more you consider "the other" the more you might relate.
ReplyDeleteA common example of "social story" is:
- Mommy talks to a lot of people. Mommy likes talking to people.
- Sometimes when Mommy is talking to other people I want to talk too.
- I can say “Excuse me!” to see if Mommy can talk to me.
This doesn't tell me much of anything. Just tell me, when Mom, Dad, or another adult is talking, ask to speak. With this example, I'd end up just asking every two or three seconds until someone clarified you only get one attempt. You'd have to clarify with such precision that I would struggle to generalize the data. You'd have to tell me every situation, so I could memorize the myriad responses.
As a child, you would also risk precision with me. If you told me to never interrupt the teacher, I might remain silent while another student was doing something dangerous. Then, I would get in trouble for not talking. It was all very confusing to me. I follow rules rigidly, when means you end up having to tell me all the exceptions. Trust me, been through that more than once -- "Why didn't you tell me?" became a refrain. "You told me not to talk." Whatever. I ended up knowing what people say is too hard to decipher with any accuracy. Best to observe them.
Research does not tell us if mental aging, repetition of instruction, or some other factor is at work when social stories or role-play appear to be successful. We also know, based on data, that social stories have a relatively now success rate beyond the specific. Generalization occurs in no more than a third of cases in larger studies.
Its interesting to me to read an autistics point of view on social stories. It inspires a couple of questions.
ReplyDeleteMany of the social stories I have seen use the word "always" even though "always" is not literally accurate. Considering the autistic's literal thinking, isn't this a mistake? Wouldn't it better to be more literally accurate?
Do you believe that there is value to the first person usage in the social story so that the child can envision himself behaving in the manner that is acceptable? When you read the "Mommy talks to a lot of people" social story can you see yourself as the child saying "Excuse me?" I'm not ignoring your criticism of it but asking about what I feel is a different issue. Will it help the child envision himself performing the behavior?
I think of social stories as simply another way to attempt to reach my son. They also help me remember what I need to talk about. I usually try several different methods hoping that one of them will turn the lights on. I also talk about what the most important things are: preserving life and safety, that these needs can override almost any rule.
I cannot "see" myself in hypothetical situations. I can clearly "see" past actual events. The entire notion of imagining myself in situation X doesn't mean much to me at all. I try to memorize rules and routines, but I don't predict future events well and seldom anticipate them properly.
ReplyDeleteThe problem is that most of these therapies are developed by people without any such limitations. The therapists and experts themselves cannot imagine not imagining, for lack of a better explanation.
I'm talked to other professors with ASDs and they give good examples. Asked to imagine eating a piece of fruit, they actually retrieve past visual memories, not imaginary situations. Asked to imagine something truly different, they simply cannot. Temple Grandin tried (without success, in my opinion) to explain this to a Science Channel interviewer. She "imagined" a read event. Asked to imagine eating a fruit on a boat, she was at a lost. Why? Because she had never done so.
I know not to run into the road because I've seen animals that made the mistake. Physical evidence -- roads are dangerous. I can't imagine myself being struck, nor can I imagine anything similar. I can't imagine a great many things, no matter how hard I try.
Social stories simply remind me that I don't imagine things in the way other people might.
I'll have to explain writing with autism at some point. My imagination functions, but I'm told it is different. I have now concept of how different, since I do have an imagination while some autistics do not. Mine is certainly impaired, I admit, but functional.
Do you believe all autistics have the inability to imagine themselves in a situation which they had not experienced?
ReplyDeleteIn reading a story about an animal running to the road and getting hit by a car -- Are you saying that you could not imagine this happening at all if you had not already seen it? And that you are not actually imagining a new picture, but reseeing the literal past example? You see it as the specific example that you have seen in the past instead of in a sort of generalized example? In talking about it I can see an unfocused something in movement and see an unfocused explosion of body matter and feel horror involved (I just heard a screech of tires too). There are few details and while I can imagine it with a specific animal involved and a specific vehicle involved, that takes work. In trying to see it in detail, I see that I don't want to do that because it increases the level or horror involved. No wonder autistics have such horrible meltdowns or no reaction at all. I say "car wreck" and they see a series of detailed car wrecks they have actually seen?? (Or perhaps a series of cars and a series of wrecks). Or they see nothing at all? Profound detail or nothing? Is this right?
I see things I have experienced, observed, watched, et cetera, but I do not "imagine" new things. Temple Grandin and Daniel Tammet have both written of thinking purely "visual" thoughts. Even numbers are visual objects I "see" when deal with mathematics.
ReplyDeleteI did not understand the Holocaust without seeing photos or films. The words didn't meant much to at all. Even now, I don't respond to some of the documents I've read, but I do respond to the images.
I don't read a great deal of fiction, since it doesn't make sense to me until I have seen something similar I can use to "substitute" via visual memory while reading. For example, any science fiction I read was going to "be like" Star Trek -- I couldn't "imagine" other ships or crews. I saw something specific. Studies find that some autistic teens like "fan fiction" because the characters and settings are pre-defined. They don't add or change characters.
It is difficult to explain, but I do suggest reading memoirs by autistic adults.
I think highly visually (as well as a few other ways). But as I read what you are writing I am thinking that what you mean by "think visually" is different than what I mean. Your lack seems to be in visually producing something visually new or generalized (though I believe Temple Grandin can visually produce something new, but maybe not generalized).
ReplyDeleteBut I do believe you generalize, because this whole article is about a generalization. The generalization does seem to be in your mind because it is the theme around which you are writing your article, but you seem to have difficulties stating directly. "I have serious doubts about the value of social stories for autistics" would be a good generalization or summary of your article. I do think that information is in your mind in some form because it is organizing your thoughts and producing this article.
There are things that I "think" or "hold in brain" for which I have no visual picture or sound or symbol that I can share with others but it is still there. Instead what comes out of my mouth is an over dogmatic conclusion for which my great frustration is the inability to provide the detailed data to show other people that I am correct. That seems to be the opposite of an autistic (which I find odd since I find I do highly relate to many features of autism).
When you make a conclusion, how is the conclusion expressed in your mind? I think its expressed as the series of data snap shots to support the conclusion (data snap shot that all agree with the conclusion). The data as a whole is the symbol for the conclusion? It is a conclusion, but the inability seems to be in stating in a generalized manner?
I have read some of Temple Grandin writings and am currently reading The Unwritten Rules of Social Relationships which Sean Barron co-authors. They talk a lot about themselves in this book. I also spent the first part of my married relationship trying to understand the difference between what my husband would say and what I would say and why sometimes he just couldn't answer my questions and I concluded that he speaks "data" and I speak "conclusions" (and if the answer to the question involves too much data or data not easily turned into words, he says nothing or perhaps he says nothing because there is not conclusion in his mind to cause a selection of data that could be spoken). We do both do the other, but the other is harder for each of us. Similarly, I'm noticing in your writing that when I ask a generalized question, that I don't get a generalized answer I get more data. You seem to be able to turn data into words, but not your own personal generalizations into generalized statements. But I really do believe that generalization exists in your brain.
I generalize, as generalizability is a research requirement. It is something based on both odds and experiences. I cannot "see" that a medical procedure is generally safe -- but the moment I think about something such as surgery I start to research the data so I can visualize the data. That's a "new" visual image, just as I haven't visualized every number, but when I think of any number I do "see" a new shape.
ReplyDeleteSocial stories assume a different type of generalization than I can perform. I cannot generalize "80% of the time it is wrong to interrupt a phone call" because what are the criteria for the other 20%? That would mean indicating all the exceptions so I could memorize those. However, I can generalize that 80% of eye surgeries are successful, which is why I agreed to a particular surgery.
If you tell me I must design a house, I could probably do so, based on previous floor plans I have seen. That's generalizing, but within parameters. I can certainly write, compose music, and perform other tasks by applying rules I have learned. There is a great little software app called "Mozart Machine" that composes "Mozart-like" music based on random numbers. That's often how I approach things -- rules based creativity. I believe many artists do this instinctively, while I consciously plan my work and need the math equations or visual guides.
Social stories need more research to determine the criteria for the individuals most likely to benefit and the best practices for teaching the social rules. I memorize books on body language and facial expressions, but find that my processing time to interpret is still too obvious. By the time I analyze an expression, the person is already offended or senses the awkward pacing. I've had others tell me of similar experiences. Because we consciously analyze, the 500ms or longer delay has a demonstrable effect on interactions. There is a great deal of research supporting the 500ms barrier, and one researcher even found 50ms is the upper limit "normal" people tolerate in instant analysis of social situations.
My biggest problem, however, remains metaphors. In a class years ago we read, "She had daggers for fingers." I see the daggers, like Edward Scissorhands. I had to have it clarified by a classmate that it simply meant thin fingers. I was quite confused by the text.
I also see daggers, though not in great detail. Without context, "daggers," being weapons, I would intepret that there was something menacing about her fingers, that they added to the overall picture of the woman as someone hurtful or dangerous or scary. I would only interpret it as only meaning "thin" if the context of the story was talking about her thinness. So unless the context of the story was talking about thinness, I think your classmate is rather unimaginative in his thinking.
ReplyDeleteI agree that this is a problem with Social Stories:
ReplyDelete"I cannot generalize "80% of the time it is wrong to interrupt a phone call" because what are the criteria for the other 20%? That would mean indicating all the exceptions so I could memorize those."
I intuitively object to Social Stories when I read them because I know there are expections and I despise how they are written. They are so "closed."
When I think of the problem expressed by this, I consider it to be a problem of understanding priorities (which are generalized things). For example, safety is a priority and an exception to almost every rule. I think an autistic person needs a decision table of priorities to memorize.
Also, I believe that part of the concept of a Social Story is that getting you to do something right 80% of the time is better than none at all.
"But I think Social stories need more research to determine the criteria for the individuals most likely to benefit and the best practices for teaching the social rules."
I agree. I think most of the education world functions like an autistic person by making policy decisions without paying attention to the context of the individual response (80% of kids respond to x, therefore do x to everyone). Intuitively I pay attention to whether something is working with my son and change tactics when it doesn't seem to be working. I use Social Stories, but I stop and talk about the exceptions to the rules. I'm not sure this would have worked for you, but with my son I see more flexibility in thinking than I would expect in an autistic child. In workbooks I have seen him choose two answers when he can see that both have a element of truth in them. In a social skills exercise he was supposed to indicate something he would want to share and something he would not want to share and he wanted to put his piano under both.
Policies of organizations need to function like a computer program or an autistic mind, a very refined decision table based on lots and lots of data. But when it comes to applying those policies it needs to be done in a non-autistic manner: Context, individual needs and abilities, and intuitive guessing must be allowed to over-ride policy.
For our family, homeschooling has allowed me to dump the whole system. It allows me to immediately evaluate and change tactics when teaching my son. This works for me because I think I'm the opposite of an autistic. Nothing is black and white. For me it is impossible to state a perfect rule (no matter how complex the statement) and when someone makes an absolute statement I shudder because I start imagining all the exceptions that they have just expressed a closed mind to.