Aspergers Dilemma

October 21, 2005 9:39 AM

Some dear friends of mine have an 11 year old son with Asperger's Syndrome, and I'm concerned because they are doing little if anything to aid in his socialization, allowing him to spend practically all of his time watching tv and/or playing video games.

He has no friends at school and gives me the impression that he goes through his day there basically alone making minimal contact with any of his classmates. I'm very concerned about his developmental options at this crucial time in his growth, and not wanting to offend his parents, seek some way to give them a sense of some options for getting him out from in front of the TV. They seem ashamed of his having AS and will only discuss it reluctantly and defensively. I think he's very high functioning but they have stated that they believe that they may have to care for him for the rest of his life.

Is there anything I can offer in this delicate situation?

posted by gallois to health & fitness (23 comments total)

Sure. When you find the magic pill to fix their son let me know so I can fix my own son. I've been looking for it for ten years now.
posted by Lokheed at 9:45 AM on October 21, 2005

I'm sorry, that was snarky and undeserved. Last night was a very long night with my son (he only slept 2 1/2 hours, which unfortunately has not been unusual of late). If I could delete my first response I would.

More in the spirit of Ask Mefi: I would posit that the parents are much more aware of the options available than you are. They have been living with it day in and day out for over a decade. About the best thing you can do for them is to be a good friend, and not judge them.
posted by Lokheed at 9:50 AM on October 21, 2005

Seriously. What should you do in this situation? How about mind your own business. It's not your kid. Would you want people telling you how to raise your children?
posted by ChasFile at 10:19 AM on October 21, 2005

They seem ashamed of his having AS and will only discuss it reluctantly and defensively

It's good of you to want to help, but there is a general rule that applies here: It's very difficult to get adults to change their behavior when you offer advice that they have not requested.

In other words, when you offer unsolicited advice, you're essentially saying "You don't recognize that you need help, otherwise you'd have asked - so you're the problem here."

As Lokheed said, About the best thing you can do for them is to be a good friend, and not judge them.

If they DO complain to you at some time in the future, that would give you an opening to ask them if you might help, and if they ask what kind of help, suggest that "talking about it might help", or that you could research it, or whatever. And if they agree to that, then, in fact, you may be able to help.

In short, you're about three steps away from being able to do anything (constructive) other than being there as a friend.
posted by WestCoaster at 10:20 AM on October 21, 2005

I didn't mean to be judgemental, but maybe this is one of the pitfalls of dealing with AS. There's definitely anger and sadness that doesn't necesarilly get dealt with easily. I guess AS is hard to understand so it's not easy processing the emotions generated by and surrounding it, for the parents as well as the extended family. Maybe I'm hoping that there's some really great and effective therapy out there for it, when there isn't. Maybe it's wishful thinking.

AS exposes aspects of a private family dynamic to social scrutiny. It's very complicated.
posted by gallois at 10:25 AM on October 21, 2005

My response hinges on the question of: "Do people with Asperger's socialize better together?"

If so, are there local support/community groups? Schools?

One thing, that may be putting the parents in a defensive mode is the thought that they are alone.
posted by jkaczor at 10:28 AM on October 21, 2005

I was a bit AS as a kid. I spent a lot of time alone with my legos and books, but I loved it completely. Sometimes spending time with other children really sucks. Kids are cruel, especially when one has trouble picking up on social signals. I hated the forced time spent with cousins (torture!) or how my mother would require me to call at least two friends a week (I had nothing to talk about).

It was a little easier for me to spend time with adults. Perhaps you could spend time with this child and take him to museums if you're really worried. AS kids are really bright and are usually happy to spend time on their interests as long as you aren't forcing them to do things they don't like.

Otherwise, leave the kid alone. I know you mean well and are alarmed by a child spending so much time with the TV alone, but putting pressure on the parents or the child to change will do no good. AS is not a death sentence and the child will change when he is good and ready.
posted by Alison at 10:32 AM on October 21, 2005

My nephew doesn't have AS, but he is dyslexic and his twin is not, and so he's got some issues. He lives far away from us, but when we are able to see him, we do basically what Alison says -- we're supportive of him as a person, and we try to help pique his curiosity and be an interesting, fun aunt-and-uncle-combo. If you have that sort of relationship (or could have) with the kid, then cultivate it, I'd say. As long as his parents are down with it, it can't hurt, and may actually give them some relief from 24/7 supervision.
posted by Medieval Maven at 10:43 AM on October 21, 2005

What Medieval Maven said. Looking back on life with an autistic brother I'd say that what would've helped all of us the most was some bloody respite. And that includes my brother. And still does.
posted by firstdrop at 10:52 AM on October 21, 2005

We have a 12-year-old son with AS. After attending public school through fifth grade, he is now in his second year in a school for 'twice exceptional" children. It has made an enormous difference in his socialization and in his willingness to do schoolwork. He is happy as a clam with children like himself. I only mention this because it has given us great hope for his future.
posted by lukemeister at 10:53 AM on October 21, 2005

Do you spend any time with said child? Could you offer to take him to museums, ball games, or other activities that would get him out from in front of the tube and socializing (at least with you), but wouldn't have you giving his parents unwanted advice?
posted by alms at 11:22 AM on October 21, 2005

I am 37 and diagnosed with AS, and can speak from experience. At that age, socialization opportunities are really intimidating, and no one can "fix" it by putting him in social situations (especially since his peers are extra xenophobic at that age). I wouldn't recommend sending him to HS football games, dances, etc.

One thing that would help is if he mingles with an accepting group of peers: i.e. geeky or nerdy people. There's special schools, as lukemeister said. Also there are activities where he'd probably feel comfortable and might meet a few people -- renaissance fairs, SF conventions, and SCA are worthwhile. I've never been involved in them myself, but I found BBS (online computer) meetups to be interesting, back in the day when BBSs were still the rage.

More importantly, I think, it is helpful if his parents expose him continuously to new and interesting places. Lots of varied road trips, entertainment shows, culture, etc where he feels comfortable. What this does is not only exposes him to people, which I think is helpful in reducing the intimidation factor, but more importantly it gives him a lot of life experiences, which in turn gives him a wealth of conversational material that lets regular people relate to him. I'm pretty well travelled and found it has helped me immensely in conversation. Us AS people are bad at small talk.

I'm aware that the problem is twofold (how to deal with his parents), but I'll leave that up to others.
posted by rolypolyman at 11:27 AM on October 21, 2005

Some of this may sound judgmental and/or harsh--in which case I apologize in advance. I don't mean to be snarky or condescending or anything, but this is an important subject to me.

I am HFA/AS, 24 years old. From middle school onward I had few friends and no afterschool activity. Most of the interaction I had at school was in the form of torture from people who liked to make fun of my obsessive interests. I liked school work well enough, but I hated school. I used to fantasize about the school being a place where you'd just go, do your work, and leave, instead of the den of torture it often was for me.

I got my social interaction during that time from a close group of regular friends on the internet (this was back in the mid-90s when the internet wasn't quite as full of trash as it is today, though that element was still there.) Everyone was always concerned about me "spending too much time on the computer," but it was what I needed at the time. It made me happy. Yeah, I overdid it a little bit sometimes, but it was a net good and provided me with an outlet I didn't have before. I don't think I could say the same about TV, given that it's a wholly passive medium, but maybe he gets something valuable out of it. Is he happy?

Be careful about imposing societal norms on him. It's all too common to look at HFA individuals and think "oh, poor them, they're not normal." It's likely he feels overstimulated in social environments. I second the comment about doing things with adults--I have always related better to people much older (especially the elderly) and much younger than myself. Animals, too. I was always afraid of my peers--still am, to an extent.

I am similarly bad at small talk, but if I feel comfortable with someone, I am able to talk just fine. I also feel threatened by eye contact from people outside of my intimate circle. I'm constantly afraid of visibly "missing a beat" in conversation, and that anxiety affects me adversely, but if I'm with people who understand that and understand that I don't mean anything badly by not being able to engage in small contact or make eye contact only sporadically, I feel a lot better.

I am very high-functioning. It took me some time to adjust to "growing up," and I followed a different, slower track than most people do. But I got there. I've lived with my girlfriend for over two years now, have steadily acquired my own independence and ability to take care of myself. I still don't have much in the way of social interaction outside the home (I attend community college classes, on track to transfer into a 4-year program next fall), but I don't really care because I don't want a whole bunch of it. I could handle it, but I'm not actively seeking it out or anything.

I was able to reach this point because my mother didn't try to shoehorn me into "normalcy"; instead, she just offered me a lot of support in whatever I chose to do, and a lot of encouragement. Sometimes she was actually a little too protective, and sometimes a little nudge IS necessary, don't get me wrong. But for me it had to be done with a light touch.

I really hope his parents aren't all doom-and-gloom-we'll-have-to-take-care-of-him-forever around him. If my mom had been that way I never would've wanted to try anything and would just have felt like shit. People who are really high-functioning people can interact with society just fine. They just need the proper time and support so they can write the software for their brains to interface with the greater social network, as well as figure out how to compensate for some of the problems they may have (I am not, but a lot of HFA people are hypersensitive to light, touch, sound, etc.) See, non-autistic people are born with this ability innate, but in HFA cases, there are often varying degrees of disassembly and reverse-engineering of social protocols that have to be done--I have to understand most social protocols before I can engage in them, and that requires a lot of front-brain thinking, observation, and time. It's like conducting a crude form of ethnography on your own people.

I realize that this boy is NOT me, I DON'T know his parents, and that not all of this applies to his situation. In fact, a decent chunk of my delay in dealing with things came from some emotional turmoil and family happenings that would have affected anyone badly. However, this question reminds me of my own development and I thought it might be helpful to give you that perspective in considering this question, as long as you bear in mind that a) every case is different, and b) WestCoaster et al. are probably right about offering unsolicited advice--especially if the parents are already defensive about it.

Just try and be there for them, and if you can cultivate a relationship with the child where he feels safe around you, you can do some good that way. I would suggest that you play to his interests, if you can. I love discussing my interest du jour with people, and there are few joys for me greater than fully indulging whatever that interest is... watching/reading about it, learning everything about it, absorbing the essence of what it is.
posted by Kosh at 11:37 AM on October 21, 2005

Don't worry so much.

It's an entirely reasonable strategy for an 11 year old with AS to go school, keep to himself, and come home to videogames and television, opting out of the cue-reading, small-talking and raw popularity games of adolescent social life that he can never win.

You'd be amazed how many people with AS grow into socialization shortly after adolescence, where shared interests, work, academics, and other things that AS people handle better can support the formation of relationships, and developing the confidence and skills which sustain relationships.

If he doesn't seem lonely or unhappy to you, don't meddle. If he does seem lonely or unhappy, you might constructuctive not by trying to get him to jump into the teenage social game headfirst, but by introducing him to activities which are just as enjoyable as TV and videogames but which have the incidental virtue of involving other people. Sports, acting (AS people can sometimes do quite well from a trip), chess, whatever, or even gaming at those game-coffee-shops.
posted by MattD at 11:56 AM on October 21, 2005

I've read several books about AS and have never had as good an understanding of it as I have from reading the postings here. I really appreciate your willingness to share your own experiences. I have a much better sense of what's going on now. It's clear that being too concerned is counterproductive and will only chafe people who are doing the best they can. I also see that things are probably not as bad as I had feared and that supporting a child's coping strategies is more important than measuring him against a scale of "where he ought to be" developmentally. With this in mind I think communication will be much less charged and anxious. Thank you.
posted by gallois at 1:38 PM on October 21, 2005

Late to the game as usual.

You do have an advantage in that some of your fellow MeFites are AS/HFA/EIEIO.

Every situation is different, obviously, but it sounds like what you've described is a fairly typical situation regarding AS kids (it's pretty much how I grew up, and I turned out OK).

Kosh's response was great...is there anything else you might want to know?
posted by geckoinpdx at 3:26 PM on October 21, 2005

I admire your interest and compassion; Asperger syndrome is a terrible disease and greatly stresses the caregivers.

I would suggest offering nonjudgmental quiet listening and support to the child's parents. My guess is that, if they care to speak with you, after a couple hours of listening to them you'll have a better sense of why they're making the choices they are.

Also, caregivers need moral support. This is a way in which you can be quite helpful - letting them know that you respect them for bearing up under their extra burden.

If you offer your opinion or judgment on their situation, even if it is well intended, you are likely to run into obstacles and some active resistance. Even doctors have this problem, and presumably the parents have sought us out for our opinion to begin with.

So: go gently.
posted by ikkyu2 at 3:31 PM on October 21, 2005

Kid sounds pretty smart and mature for his age -- he's already learned to eschew the company of the other kids, who undoubtedly treat him like crap because he's different from them and that's what kids do. He's learned that his own peace and contentment is more important than satisfying grown-ups. Of course, this maturity will result in other negative consequences, such as well-meaning busybodies forcing him to spend time with his tormentors in an effort to "socialize" him and thereby eventually make him "happy." Thus he will learn another important lesson, assuming he hasn't already: grown-ups can suck as much as children. And in this world, "people can suck" is pretty much everything a kid needs to know. I think he's well ahead of the curve.
posted by kindall at 4:03 PM on October 21, 2005 [1 favorite has favorites]

If the parents are overwhelmed, maybe offer to do some respite care. It takes a huge amount of energy to parent a difficult child. Try being a friend to the child, on the child's terms, if he seems open to it.
posted by theora55 at 5:51 PM on October 21, 2005

Also a tad Aspergey here. One thing that made a big difference for me was that I had a really good buddy who could relate to me. Our parents put us in karate class together and we would play d&d constantly, argue about whether there was a "double earth" on the other side of the sun (that one got pretty loud), etc. His parents were gracious enough to take me along with them several times on their travels to Europe and exposed me to many things I would likely have missed. I'd say just offer to take the kid to neat places; if he likes video games get him an unusual/educational one, etc. Everybody's different and plenty of talented, happy and interesting people grew up watching tv and being loner weirdos.
posted by Astragalus at 6:38 PM on October 21, 2005

Something that hasn't been directly mentioned; I think the extrovert/introvert distinction may be a useful analogy here, in simplified summary: extroverts gain energy from social interaction, from being around people, and wilt when alone, wheras introverts, even if greatly enjoying social interaction, are drained by it and need some time alone to recharge for more.
For someone with AS, social interaction is work. That doesn't necessarily mean it can't be fun or rewarding, just that it usually takes something out of you, and you'll need to be able to recoup from that.
If you've ever worked a job where not only do you have to work hard, but you get no time off - 12 hour days 7 days a week, you'll know that even if you like(d) the job, never getting time to recoup can grind you into the ground, and if you don't like the job, the results can be devestating.

So what I'm saying is, it's quite possible that there is a set amount of time alone the kid needs just to be social at school. So don't take it personally if he doesn't want what you offer - he might want it, but know better than to take it. Or he might take you up on it, but after a while, become more and more reluctant to continue. Again, it might not be personal, you may simply be up against the limits of the hours in the day, because the need to recoup alone may be a non-negotiable requirement to continue to be functional the next day.
posted by -harlequin- at 8:09 AM on October 22, 2005

Here in England the NAS is running a pilot 'after school club' for Aspergers Children. It's a pretty good idea and seems well appreciated by parents and children. We're working to find the right kind of activities, trampolining and lazer-tag have proved pretty successful (other suggestions would be appreciated). You might want to see if there's something similar in your part of the world, or perhaps help set one up.

It's easy to get frustrated with Aspergers, watching all this energy and in many cases real talent diverted into computer games and complex sessions of Yu-gi-oh can seem such a waste, so maddeningly unproductive at so many levels. The fact is, that's what they want, what they choose - and what is productive is not always what it seems. If you haven't already, check out Fortune's profile of Bram Cohen, AS creator of Bittorrent. When this energy runs in harness, it changes the world.
posted by grahamwell at 3:03 PM on October 23, 2005

Look on the web for the Georgiana Institute.org. They have an audio program that helps. Also see the book "Dancing in the Rain" by Anabel Stehli. This will really open their minds if they're willing.
posted by buddy10pa at 2:50 PM on November 3, 2005