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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?
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 don't know why every other special group like gays and transexuals expects society at large to adapt to them, but I have to adapt to society?
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 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.
I don't think you were paying attention to what the OP was saying, which is that credentials are not related to performance. Public schools, however, are generally unionized, so that credentials are valued more highly than actual performance. From local reports I have heard relating to students on the autism spectrum, it seems to me that they are either given some dumbed-down busywork, or efforts are made to keep them from disturbing "real students".
For those who know about ASD, however, this is not entirely unexpected. One of the problems is that autism is a *spectrum* of behaviours, meaning that everyone with autism is different. Of a hundred people with the disorder, you will find those with developmental delay as well as mental giants, those with physical handicaps and the physically healthy, some who dislike being touched and others who don't mind, some who speak and some who don't, etc. etc. Lumping them all into a single classroom, or using a single teaching method, is bound to leave many of these kids behind.
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.
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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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.
They don't come naturally. Those are skills you have to learn. Most end up being naturally taught, but some people miss it.
Without proper supports*, he quickly winds up socially isolating himself with his actions
Which he will always do until you teach him better social skills. Don't look at it as some medical disorder, look at it as a skill gap. I have the same problems and I'm 28. There's no one to help me now and no one ever tried. The older you get with poor social skills the worse it gets. People don't fault kids for social awkwardness, but you're a creepy crazy guy if you're socially awkward after being a teenager. People don't give you any benefit of doubt. You exist to kidnap or harass people as any mistake you made was on purpose and for some specific reason. 'Why does this person not have any friends? He must be dangerous, lets stay away from him.' Social awkwardness is a self perpetuating problem that can quickly spiral out of control into deep depression and suicide.
You won't help him by teaching others how to behave around him. You can't teach everyone he'll meet in his life. You have to teach him how to interact with others.
Worse, he will interpret any sign of kindness as friendship and follow this person.
Because everyone else ignores (or hates) him or at least that's how he sees it. When no one talks to you, that one person who does must be really interested in you. Why else would they talk to you? No one else does.
Please don't let him end up like me. Teach him social skills like you might teach someone math. Read about some specific type of communication or behavior and then practice and practice and practice it. You might have to deal with anxiety issues as well.
I'm sorry, but YOU are the idiot. Autism is not a disease. The problem is not autism, it's neurotypical people who need to have things their way. Don't be a part of a neurotypical person pointless social rituals and the little asshole will do whatever he can to hurt you. So your solution is to make sure autistic people learn a way which is not and will never be natural for them because YOU can't tolerate someone else not playing your social games? Fuck you. The best thing that could help autistic people is if YOU went to therapy to cure your social obsession.
Every fucking day of my life I have to act. I can never be myself or I will be hated. Of course I'm now quite good at acting and playing your stupid social games, but having to constantly play a role is extremely tiresome. After a simple two hours meeting with a client, which I have to do frequently because neurotypicals need to have social contacts even when working, it seems they can't think if their social instinct is not satisfied, I'm so tired I need to alone with my cats at least for a full day. Yes, it's debilitating, but it's not autism per se which is debilitating, it's me having to play your idiotic social games.
You should try to play by my rules. I'm pretty sure you wouldn't last more than a few days before saying being "neurotypical" is debilitating and need to be treated.