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Autism: Are Social Skills Groups and Social Communication Therapy Worthwhile?
vortex2.71 (802986) writes I imagine that enough of us on Slashdot are on the Autism Spectrum or were once diagnosed as having Aspergers that this might be the right venue for this question. My son is on the spectrum, but is in a mainstream classroom at a private school. We have spent thousands of dollars on a bunch of different social skills groups, speech communication therapy, occupational therapy, and physical therapy. We've found that the specific skills and intuition that the therapists possess is much more important than their credentials and are frequently disappointed by the overwhelming mediocrity of special education teachers, speech therapists, and OT/PT therapists. We are at the point where we wonder if our time is better spent with playdates with peers that are facilitated by us than continuing with the groups. I'm curious if there are adult Slashdoters who are on the spectrum who participated in these therapies as children who can weigh in on this? What was your experience with social skills groups and social communication therapy? Did they help?
or were once diagnosed as having Aspergers
Yes, there are plenty of self-diagnosed Aspergers people on Slashdot. Unfortunately for them, the real problem is that they are simply assholes.
As someone who remembers childhood. (And I am not Diagnosed being on the autism spectrum) kids (even little ones) can be very cliquey. If your child has social problems, the other kids may try to push him out of their games, as games in general about playing by social rules of play, kids with autism may not get the differences in the rules that the version the kids play and make it no fun for them. For a child with special needs play time needs to be monitored, otherwise the other kids will just end up doing their thing and he will be playing by himself, with kids around him.
If something is so important that you feel the need to post it on the internet... It probably isn't that important.
You're an idiot. No matter what your mother told you Asperger's is not the next step in human evolution. A dash of it is probably useful, but people don't usually have a dash of it, I'm not sure it would even be diagnosable at that stage. I've worked with folks that had this and it's debilitating.
Psycho-social education is probably the only thing that's likely to help. The question though is which program and which professionals. There's an array of possibilities, some might work and some won't. And to an extent it depends upon the individual, this isn't a one-size fits all treatment situation.
They are not robots, they are people capable of learning social skills, just as they can learn math, art, and other human knowledge.
The question is do we know how to teach them?
I don't know a lot, but I am willing to bet that autistic people are as different from each other as they differ from us. The whole thing is a spectrum, what works with one won't necessary work with others.
I think you original idea is correct. No particular accreditation will satisfy you. You need to talk to the specific teacher/aid and hear what they have to say, what they know, and what is their guiding principle. If they impress you go with them. If not, ignore them.
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I'm sure this is meant to be humorous, but it's a real thing. My son was diagnosed as "being on the spectrum" at the age of 3 (!?) because he was a huge nerd. Let me define that for you: he could read and understand complex technical manuals and apply the concepts, he could do double digit addition and subtraction in his head, he set all our DVRs for his shows, balancing hard disk space... I'm not some crazy parent who sits there trying to drill crap into a 3yo head, it's useless, he just was like that. What he would not do, however, is talk in any "normal" way. He would answer your question with a simple word, but never initiate. He would not talk about things he liked, or stuff he wanted to do, etc. He took toys apart and put them back together, but he didn't really have any fantasy activity with them. All these are warning signs on your yearly checkup list at the pediatrician.
So eventually we were "compelled" to take him to a specialist, and she diagnosed him. We were very reluctant, we knew there wasn't anything wrong with him, but we were getting that "or else we'll call CPS on you" vibe. So they diagnosed him as ASD: PDD-NOS, doctor speak for "fuck if we know". They prescribed a bunch of therapy which we declined, and miracle of miracles, like a light switch was turned on he started talking. And when he started talking, he started talking in long sentences, with big words and complicated ideas. He was "cured" and somehow manages normal life as well as any kid, but he still doesn't behave the same.
Autism has become the dumping grounds for any social behavior that lies outside the first standard deviation of the bell curve. It's especially obnoxious since it's being diagnosed lately with sociology, rather than actual science. No one did a brain scan or anything like that, it was all based on proto-pavlov dog experiments. The downside here is that, having grown up around autistic people, there really is such a thing and those people are not being well served by all this distraction. Money is being misspent on "easy' cases, rather than helping people who are really suffering.
I've never been diagnosed, a few online tests put me solidly Aspergers but that doesn't mean a whole lot. With that being said, for myself I've never been able to intuitively understand social interaction. Over time I've been able to think through social interaction and get a better handle on them.
My parents tried putting me in a learning disability freshmen orientation in college but I went to the normal orientation instead. I've found the best teacher is just time being around people. The more I observe, the more it seems to make sense.
And ultimately I've just come to the realization that we are all weird in our own way, anyone who can't handle that can stick to their own clan.
I've been diagnosed with borderline Asperberger, i.e., it wasn't specifically tested for, but 70% of other people who scored the way I did on certain tests also were diagnosed with Aspberger. I also have a son who's mildly affected, and is positively diagnosed.
This is a little off-topic relative to your questions, but here are some of the things we've found:
I found the book "The Reason I Jump" enlightening to understand what Autism really is. It was written by a 13-year old autistic kid. When you read it, you really understand that Autism itself is not just "being slightly odd", but a whole different, out-of-control experience for that person, which you do not want to live through. Some may be talented in a narrow type of tasks, but that is not the point. So I heartily recommend reading "The Reason I Jump" to get an insiders POV.
NB: The message above might reflect my opinion right now, but not necessarily tomorrow or next year.
First, I'll say that there's no one solution here. Autism is a tough thing to put into a single box and find a prescribed set of steps for. People with autism are still people, and we're all different in our approaches to the world around us.
That said, I totally get where you're coming from. My daughter is autstic, and we've spent an enormous amount of time and money on various therapies to help her interact more easily with the world around her. Notice that I didn't say, "change her," or, "cure her," or, "make her fit in." She's a wonderful person who just has a really hard time communicating with others and dealing with the sensory load that people live with all the time. I just want to help her develop the ability to compensate for that so she can have the opportunities to interact with others that she deserves.
But as you've found, it doesn't take long before you're a much better SLP, OT, PT, etc. than the people you're paying for that expertise and help. We've gone through countless therapists of various disciplines because while they had the credentials they had absolutely no practical experience or approach to dealing with autstic people. It's incredibly frustrating for me as a parent, and for my daughter, who really needs to build some long-term relationships with people but can't count on ever seeing the same providers because they either suck, are far too heavily booked because they don't suck, or burn out and go find something easier that pays better.
There are still further questions about whether any of the therapies are effective, since we've only got the one kid and there's no control group to measure against. She's smart and makes progress on her own, and we know how to effectively help her develop because we spend so much time with her. But is she getting any value out of a 45-minute OT session with somebody who's used to helping people learn to eat after a car accident? I have no idea.
But the one thing I do believe is important is to provide opportunities for social interaction. My daughter tends to ave more successful interactions with adults because they're patient and polite and understand that they're not dealing with a standard-issue kid. But it really breaks my heart to take her to a playground. She's cute and happy and wants to meet other kids, so she goes up to them and says, "Hi!" Then the other kid says hi. And then it all falls apart. She doesn't know how to get past that, and the other kids figure out that something weird is going on. They might say one or two more things, but then they give up and wander off. It's too big a barrier to overcome in a casual encounter, and they have better things to do.
Opportunities for mediated playdates are probably the best thing, and we're trying to do more of that. But at least for my girl, equipping her with a basic set of social skills to get past the introduction and on to some further interaction is the thing we struggle with most, and the one thing she needs more than anything else right now. Some of that is communication, but most of it is ritual and nonverbal queues. I think it can be taught - scripted at first, then more natural over time - and should be a priority.
In the end, as a parent, I want my daughter to be happy in life. She's destined to be weird/quirky/odd, and I think that's OK. Like many people here, I work in a field that has a large portion of people who fit that description and I appreciate that. If she chooses to be alone, that's one thing. But I'm going to do everything I can to help her get to the point where she can choose how and when to socialize and to find the people who make her happy and comfortable. Like the OP, I'm interested in hearing from those on the spectrum who are now adults, and their path to where they are now. But please remember that not all autistic people have that choice or capability. There's a selection bias that can't be avoided in soliciting that information, so interpret the responses accordingly.
Perhaps a key part of the problem is that neurotypicals are the ones that are 'pieces of shit' that don't develop the skills to work with people who think in a manner different than their own. If they bothered to work on their ability to empathize and make themselves understood better, the lives of autistics could probably be a great deal better, in addition to society being able to benefit from more productive citizens and less citizens who are a burden.
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I'm sure that if I were a child today I would be diagnosed with all kinds of disorders ADD, ADHD, ASD, OCD, etc... Today kids are diagnosed with those type disorders at the drop of a hat and often times by school teachers and school counselors based on one or two incidents that happen in a.the classroom. I have five sons and every last one of them had a teacher like that. They all grew up to be normal and healthy.
I could argue that those are different things entirely but instead let's assume that more tolerance and acceptance of people with Aspergers is something that society should move towards. It won't happen overnight. You must manage with the hand that was dealt to you, - not the one you wish you had.
For example I don't have Aspergers but I was very shy as a kid. As a teenaged boy this does not lead to many dates. I used to get upset over the expectation that the boy had to be the one to make the first move. "They can come to me" was my attitude. You can imagine how well that worked.
Eventually rather than lamenting over the way the world operated and that it wasn't fair to people like me, I figured out that with some effort I could learn to be more charming and outgoing, -even with people I didn't know. It's gotten much easier and I'm much more confident, but I'm still envious of the people for whom it seems to be effortless and who apparently thrive on those same social interactions that I find challenging.
The appropriate way of dealing with homosexuals is to let them be themselves and to treat them equally. If your suggestion to homosexuals over the difficulties they have in society is to act like a heterosexual, then you are (correctly) seen as a bigoted asshole for doing so. However, the manner in which autism is often dealt with is to train them to resemble neurotypicals to the extent that they are not ostracized as much. What it looks like this AC is suggesting is that society actually allow autistic people to be autistic people instead of trying to shoehorn them into being like neurotypicals.
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I have twins with an Autistic Spectrum Disorder (it's hard to narrow it down because it doesn't really fit any of the DSM4 categories.) I've not found that /formal/ social skills work is very helpful. What seems to work better is finding situations where they can have positive social engagement with people who "get it". As you observed, I've found that the particular training is much less relevant than whether the person "gets" people on the spectrum. A lot of people just don't understand how kids on the spectrum think, and they never will.
For us, our church was a great resource for an understanding, friendly group of people who knew us well enough to know that the twins needed special gentleness in social situations. But I don't think that would be true of every church.
"He who would learn astronomy, and other recondite arts, let him go elsewhere. " -- John Calvin, commenting on Genesis 1
I would take this only so far, for the record. If I felt that his behavior was actively causing him unhappiness, harm, or putting him in danger, I would try anything, even things I don't believe in that didn't seem like they would cause greater harm.
However at 3yo, none of that was true. He was happy, we were happy, only very dubious medical diagnostics which evaluate "normalness" suggested otherwise. Those diagnostics were being wielded in such a way that i felt I needed to take action, or else face unspecified legal consequences. I'm not going to debate the latter, but sensible people would try to avoid such situations where possible. Fighting the man isn't the best thing for your child, until it is.
I agree completely that as parents we have to decide if the deviation from normal-ness is a bug or a feature, not based on our own context but based on the child. If he's unhappy, maybe it's worth it. But 4 years later, in my case, my son is pretty happy and confident. The advantage of being in STEM fields is that I meet a large number of very abnormal, very high functioning people every day and don't see a problem with that. I suspect many of them struggle in social situations where their fitness for that group is based strictly on adherence to normative behavior, but I also know that they avoid such situations. This seems like a reasonable trade, we should not all have to enjoy the same things. It is frequently the other people who seem to think something needs fixing.
Scheduling playdates for your son is a recipe for bitterness and disappointment. Without feedback or direction for what the proper behaviour is, the end result will be ridicule and ostracism. Over and over. And this will continue into his adult life.
Since your son has no "feel" for interaction, the best you can get is an "intellectual appreciation" for correct behaviour. He has to learn the skill that everyone else will pick up naturally.
The first half is to get him to want to learn. You do this by rewards and other incentives, as outlined by any of a number of teaching methods. Sit down with him at regular scheduled intervals, be sure to show appreciation when he does things correctly, and show disappointment when he screws up. When he screws up, do the disappointment thing *quickly* and move on. Promise him a big reward at the end of a semester of these if he does well, and follow up on it (take him to an arcade, get him a specific toy, take him snorkeling in Hanauma bay, whatever.) Little rewards at intervals is good too (take him out for ice cream, his special time with his dad &c).
Make him want to change.
The second half is being able to recognize his behaviour *yourself* and communicate to him instantly. I cannot describe how incredibly difficult this is, you have to be alert for specific patterns and people are just not wired to do this. People go through their daily lives on autopilot, and don't normally evaluate what they're hearing/seeing/doing on a continual basis. It's s a difficult skill that needs to be developed through discovery and practice.
The problem with therapists is that the feedback isn't immediate. The therapist might be able to analyze and correct and connect with your son, but your son will tend to forget outside the session. Like I said, most people are on autopilot and changing the autopilot programming is hard.
When you get the ability to recognize his behaviour, simply say "ding!" when you see it.
It's immediate feedback, and when he hears it he should stop to consider what he's doing and change his behaviour. That's all it takes.
Be very clear that saying "ding!" doesn't mean you're angry with him or that he should stop or that he's being punished. It's simply a signal, and it's not meant to get him to stop, it's meant to get him to *think*. Also be very clear that he can ask you why you said it, and that there's no penalty for doing this.
Start with small, obvious behaviours such as repetitive habits or sentence construction, then slowly work into tactical advice (always look someone in the eye, always ask how they are doing, always remember their name), then into strategic advice ("never lie to a friend", "never tell something told to you in confidence"), then into planning advice (see what other people do and imitate them, dress like them, try to act like them).
Get a copy of "How to Make Friends and Influence People" (Dale Carnegie) and use it as a syllabus for what to teach. Also check out "Influence, the science of persuasion" as a guide for what to watch out for (so that others don't take advantage of him).
Best of luck to you.
I was diagnosed with Asperger's syndrome (now high functioning autism) at the age of 19. I went through 2 or 3 years of therapy (though not the therapy you described, mine was just one on one with a therapist), but what helped me the most (in my experience) is that I read an ungodly amount of fiction between then and now (I'm 30 years old now). Books really describe how people think, and I've found that if I interpret what people do based on what authors say people think in books I'm usually not far off. That is, I'm close enough that interpreting people based on what I've read in books is close enough to the truth that it doesn't lead to major social fuck ups. When I was in high-school (ie., before I was diagnosed), teachers would sometimes get mad at me for what I thought then was 'no reason', but I now understand that it was caused by my behavior.
For example, I remember one time when my 9th grade German teacher asked the class about our 8th grade German teacher, and I said that he was a huge asshole. This caused the teacher to flip his shit, but I had no idea why, because he and the 8th grade German teacher were clearly different people, so why would my opinion of the one affect the other? I now understand that my use of language was inappropriate, as well as that they were probably friends, or that it is inappropriate to shit on one teacher in front of another one in a classroom setting.
I'm basing my interpretation of my memory of what happened then on what I've read in the (among others) Harry Potter series. Interactions with teachers and classmates are explained very well there. I may not be able to intuitively feel what is the right way to behave, but because I have a good memory and because I read so much I'm usually able to determine what's going on now. So, in my experience, reading has been more fruitful than therapy.
Well, considering that being a "spark" tends to mean ignoring that every mad scientist before you has eventually been destroyed by his own creations and going ahead with your lava-excreting giant cockroach experiments anyway...
I figure by 2030 or so my 6-digit UID will be something to brag about.
I hear you and think very similarly ( our son taught himself to read at 3 1/2 so he could understand street sings ) except for one thing. We had a great genetic counselor who took the tack not that anything was wrong with our son but instead wanted to make sure he could be the best he could be. This included a) engaging with peers but more importantly b) being able to explain and show his passion to his friends while at the same time understanding theirs. I can't tell you how much the latter has impacted his life, while his friends where playing batman he could build them a signal light as opposed to his past behavior of just being in the corner doing his own thing. Now his friends come over to see what cool thing he is doing. I can't say how typical this is, I have met through the years a wide range from kids like him to kids who simply cannot relate to anyone else, so YMMV. At some level I think most kids would be helped by the "therapy" he went through though, it really was more about engagement to find common connections than trying to "fix" him and the practical occupational therapy gave him awesome small motor control which eludes his "normal" classmates. Selfishly, this was all for the better since my little dude is just like me, if he's broken then so am I. Fortunately he just had a fast track to what took me thirty years to learn. I do feel lucky to have found therapists that feel this way and I do think being diagnosed certainly helped with insurance payments. I hope all goes well with your future, life is hard enough either way.
My son is diagnosed on the spectrum (Asperger's). He's 11 (6th grade, middle school). Intellectually, he's probably about 13. Socially/emotionally, though, he's about 6. Without proper supports*, he quickly winds up socially isolating himself with his actions. The ways of making and keeping friends that come naturally to everyone else don't come naturally to him. He *wants* friends, but just doesn't know how to make them. Worse, he will interpret any sign of kindness as friendship and follow this person. This can either annoy the person whom he is now "best friends" with or cause harm to him if the wrong person uses this against him. This goes way beyond "he doesn't belong to the popular kids group and has to sit with the outcasts."
* By the way, "proper supports" also includes educating the other students so they know why my son does what he does. We all think of kids as mean individuals ready to take advantage of anyone they can, but they can also be helpful and supportive. We've had peers of his come up to talk to us when they spotted a problem that my son was having. They were concerned about him and wanted to make sure he was ok.
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That isn't the only reason they do that.There are lots of reasons. People like that often like consistency. It isn't even the practice. They know that sandwich. They know what it tastes like. That isn't just people. That's everything.
If you left someone like that in an abandoned city with shopping malls full of clothing, they'd probably stock up on the same clothing rather then wearing any old random thing. Keep in mind... the city would be abandoned. No one would see them. They wouldn't care.
Anything different can be stressful. Suggesting that autism begins and ends at social interactions is wrong. And beyond that, it is important to keep in mind that autism spectrum is such a broad category that there is really nearly infinite variation within it.
For one thing, neurologically there is no autism brain pattern. To the contrary, people with such disorders have an almost random brain pattern where as people without have a much more consistent and predictable pattern. And that randomness means how things line up and actually work is basically unpredictable. People with autism spectrum have practically random wiring. And sometimes that means good things happen and more often it means either bad things or nothing at all.
My wiring... ME... My wiring is pretty random. I function just fine, thanks. But then maybe I got lucky with having wiring that wasn't terrible. I can tell you that I do have trouble with interactions but personally it is not in the way you think I'd have trouble.
See. I do understand people. I understand because I have studied them. And at will I can pass for normal. No trouble at all. It gets a little tiring if I have to keep it up for hours and hours. But you'd never know. Why is my issue? I don't feel what you feel. I have feelings. They're just not human normal. I don't respond instinctively the way that other people respond. And that means if I want to interact with the monkeys that I have to listen to their hoots and chest thumps to understand what they're trying to say. And then with great skill and practice I return the chest thumps and hoots to the monkeys and all is well.
That is how I am different. Just me. I can't speak for any of my neurological cousins. But that is what it is like to be me. Now would a class that teaches human interaction be helpful for me? Nope. Because the people teaching the class are just going to be another set of fucking monkeys and they don't know how to tell someone how to be a monkey anymore then a fish can tell you how to be a fish. People just are what they are. They don't know why they do what they do are very rarely aware of why they're doing the things they're doing. The thousand unconscious signals they send each other go entirely unnoticed by their conscious minds.
I notice however. I notice and interpret them all in real time and then give the counter signals fluently.
Do you know what it is like? Imagine being stranded on a planet with people that aren't quite human. I don't mean sub human... I just mean a different breed of ape if you will. Different smell... different body language... different sexual habits... Just different. Imagine being a chimpanzee in a world full of baboons. If you've lived with them all your life then you know how they are and what they mean when they do that thing. But you'll never feel the way they do about things. All that excitement about the bright blue asses... you'll never quite get it and more importantly you'll never care.
I don't believe the classes help. I think people with these conditions need to help themselves because they are by definition too different to be fit into some cookie cutter class that just assumes they're all on some sliding linear scale. People on the "spectrum" are not on a spectrum at all. It is only a spectrum from the perspective of normals that evaluate such people from the selfish perspective of how well such people interact with normals. Yes, it helps if you can interact with normal people. But it is vastly more complicated then that... basically infinitely more complicated.
I've decided to stop wasting my time responding to AC trolls/sockpuppets... so if you want a response from me... login.