question about autism and adolescence
August 31, 2009 12:59 PM Subscribe
How would you best support an autistic child, as they move into adolescence?
I should note that this question is stemmed from recent interactions with my 10-year old nephew. This of course does not make me any kind of an expert on autism and asperger's, and I am trying to posit my questions and reflections respectfully, with some background understanding. Please forgive and correct anything that I may be ignorant on.
My nephew, who I will call Alex, has asperger's. Now I realize that it seems to be trendy to "have asperger's," but it is not a trend with him. We noticed some behavioral differences from one years old, onwards - stimming, intense preoccupation with subjects, and impairment in deciphering a lot of social cues.
Concerning his social interactions, my sister and brother and law have encouraged Alex to try and pay attention to the patterns of others. From what I understand, repetition and like of patterns is common for those in the autism spectrum - my nephew is no exception. Mostly, I feel like this has been a helpful suggestion on their part.
At least within family, Alex tries to mimic his interactions based on other family patterns. Hugging, affection, socio-familial "rules," etc. I feel like though, as he's moving into adolescence and beginning to move from being a child to a young teen, that I don't know how to work around aunt/nephew interactions with someone who has great difficulty in understanding that our interactions will (should?) change.
For example - with my niece (6) and other nephew (3), I would normally give them big squeezy hugs when I see them, because the 3 year old is shy and won't hug me otherwise, and the 6 year old because she's my mini-me. They're both still young enough for me to tease them with an annoying tickle (my occasional auntie duties, I think). They're still physically small enough to sit on my lap without it being awkward and weird. I used to give my niece "eskimo kisses" (nose-to-nose) but we've both kind of naturally outgrown this. I still give eskimo kisses to the 3 year old.
Recently when I went to visit home, Alex would give me the same squeezy hugs that he's picked on, tried to sit on my lap on several occasions, asked me for an eskimo kiss, and tried to tickle me after he saw me tickling the 3 year old.
I feel like this is inappropriate for a 10 year old and his 20-something aunt, especially because I'm barely 3 inches taller than him. I don't think he's intentionally trying to make things weird, but in trying to make up for his difficulty in deciphering social cues, is just mimicking how I interact with his younger sister and cousin, and also how I would interact with him when he was younger/smaller.
Am I just a prude? I am not his parent and obviously have no place in really truly claiming what it's like, and how one should deal with a child on the autism spectrum.
But I would like to hear from those with experience, on how to deal with an autistic/asperger child as they move in/through adolescence. I love my nephew - he's a charming, talented kid - and I don't want to hurt him and make him feel like I'm more affectionate and interested in my other nephew and niece. Yet, these past interactions left me feel quite uncomfortable. How can I explain to him that our aunt-nephew relations will not change how much I love and support him, but how I show these to him will be different? And different from his sister/cousin? I would love to hear suggestions and anecdotes of helping to make social interactions with an adolescent autistic child more smooth and appropriate through these changes.
I should note that this question is stemmed from recent interactions with my 10-year old nephew. This of course does not make me any kind of an expert on autism and asperger's, and I am trying to posit my questions and reflections respectfully, with some background understanding. Please forgive and correct anything that I may be ignorant on.
My nephew, who I will call Alex, has asperger's. Now I realize that it seems to be trendy to "have asperger's," but it is not a trend with him. We noticed some behavioral differences from one years old, onwards - stimming, intense preoccupation with subjects, and impairment in deciphering a lot of social cues.
Concerning his social interactions, my sister and brother and law have encouraged Alex to try and pay attention to the patterns of others. From what I understand, repetition and like of patterns is common for those in the autism spectrum - my nephew is no exception. Mostly, I feel like this has been a helpful suggestion on their part.
At least within family, Alex tries to mimic his interactions based on other family patterns. Hugging, affection, socio-familial "rules," etc. I feel like though, as he's moving into adolescence and beginning to move from being a child to a young teen, that I don't know how to work around aunt/nephew interactions with someone who has great difficulty in understanding that our interactions will (should?) change.
For example - with my niece (6) and other nephew (3), I would normally give them big squeezy hugs when I see them, because the 3 year old is shy and won't hug me otherwise, and the 6 year old because she's my mini-me. They're both still young enough for me to tease them with an annoying tickle (my occasional auntie duties, I think). They're still physically small enough to sit on my lap without it being awkward and weird. I used to give my niece "eskimo kisses" (nose-to-nose) but we've both kind of naturally outgrown this. I still give eskimo kisses to the 3 year old.
Recently when I went to visit home, Alex would give me the same squeezy hugs that he's picked on, tried to sit on my lap on several occasions, asked me for an eskimo kiss, and tried to tickle me after he saw me tickling the 3 year old.
I feel like this is inappropriate for a 10 year old and his 20-something aunt, especially because I'm barely 3 inches taller than him. I don't think he's intentionally trying to make things weird, but in trying to make up for his difficulty in deciphering social cues, is just mimicking how I interact with his younger sister and cousin, and also how I would interact with him when he was younger/smaller.
Am I just a prude? I am not his parent and obviously have no place in really truly claiming what it's like, and how one should deal with a child on the autism spectrum.
But I would like to hear from those with experience, on how to deal with an autistic/asperger child as they move in/through adolescence. I love my nephew - he's a charming, talented kid - and I don't want to hurt him and make him feel like I'm more affectionate and interested in my other nephew and niece. Yet, these past interactions left me feel quite uncomfortable. How can I explain to him that our aunt-nephew relations will not change how much I love and support him, but how I show these to him will be different? And different from his sister/cousin? I would love to hear suggestions and anecdotes of helping to make social interactions with an adolescent autistic child more smooth and appropriate through these changes.
I'm 28 and I still like big squeezy hugs from my aunt...
Anyway, trying to actually be helpful (I work with a lot of kids with ASD/Asperger's/PDD-NOS, etc.), I would be honest/joking when your nephew is trying to do something that isn't appropriate. Some of my kids get overly affectionate in the pool - I remind them that we give "high fives" or "props" in the pool, and then ask them if they would like a "super-high high five or an underwater high five". What I'm getting at is that I don't make a big deal out of modifying this kind of behaviour, and I still try to keep it light/fun.
Regarding the tickling, you may need to hold off on tickling the 3 year old, or find other fun/silly ways of expressing affection that the 10-year-old could get in on - maybe a "secret handshake" or something like that? Actually, I don't tickle little ones that much - many of them don't really like it, but don't say anything - I realized that this was the case when I heard from several little ones actually asking me *not* to tickle them - I figure that the ones who speak up are probably in the minority. But I digress. Your 10-year-old nephew may struggle with/take some time to grasp the idea that certain activities are okay for the little ones, but not for him.
Most importantly, remember that he is still a) your nephew and b) a kid first, and a person with a disability second (third). I get the sense that overall you may be feeling some unease with him as he becomes bigger (and, to be honest, probably not as cute and less easy to manage). If this is the case, it might help to examine/discuss these feelings with a non-judgemental friend/family member - working with tweens/adolescents with disabilities is different than working with the cute 5/6 year old, and not everyone feels comfortable in those kinds of relationships (even some of my coworkers, if they've never worked with older swimmers before).
Good luck. :)
posted by purlgurly at 1:44 PM on August 31, 2009
Anyway, trying to actually be helpful (I work with a lot of kids with ASD/Asperger's/PDD-NOS, etc.), I would be honest/joking when your nephew is trying to do something that isn't appropriate. Some of my kids get overly affectionate in the pool - I remind them that we give "high fives" or "props" in the pool, and then ask them if they would like a "super-high high five or an underwater high five". What I'm getting at is that I don't make a big deal out of modifying this kind of behaviour, and I still try to keep it light/fun.
Regarding the tickling, you may need to hold off on tickling the 3 year old, or find other fun/silly ways of expressing affection that the 10-year-old could get in on - maybe a "secret handshake" or something like that? Actually, I don't tickle little ones that much - many of them don't really like it, but don't say anything - I realized that this was the case when I heard from several little ones actually asking me *not* to tickle them - I figure that the ones who speak up are probably in the minority. But I digress. Your 10-year-old nephew may struggle with/take some time to grasp the idea that certain activities are okay for the little ones, but not for him.
Most importantly, remember that he is still a) your nephew and b) a kid first, and a person with a disability second (third). I get the sense that overall you may be feeling some unease with him as he becomes bigger (and, to be honest, probably not as cute and less easy to manage). If this is the case, it might help to examine/discuss these feelings with a non-judgemental friend/family member - working with tweens/adolescents with disabilities is different than working with the cute 5/6 year old, and not everyone feels comfortable in those kinds of relationships (even some of my coworkers, if they've never worked with older swimmers before).
Good luck. :)
posted by purlgurly at 1:44 PM on August 31, 2009
First, talk to his parents about how comfortable they are with you explaining things.
Second, you'll have to ditch "who you are." The most important part of dealing with someone who is, to coin a phrase, differently-wired is to accept that you have your own wiring you came with and that, if they aren't able to come to you, you must go to them.
Read books, even (or perhaps especially) fiction: I'm sure you've seen The Curious Case of ... but I also recommend The Speed of Dark for a book that's set as near-future sci-fi, but is really about how people with an autistic spectrum disorder who are still functional can get along, if they are allowed to. Imagine if you were wearing very thick glasses which made it impossible for you to see someone's facial expressions — what would your world be like if that were permanent? What if you could no longer hear tone of voice?
Your own discomfort is something you will have to laugh off, ignore, etc., A friend who is a nurse recounts numerous incredibly inappropriate things people do and say while going under anesthesia, everything from "you're pretty *facetouch*" to out and out breast-grabs, from folks who are polite and normal when they're not being gassed up with whatever. The nurses, by and large, laugh it off by putting some distance on it.
Explain things, verbally, and give some clear examples. Give reasoning. Because is never a reason. Neither is "that's just the way things are." You might say, "That's what the majority of the people in this culture are comfortable with" or "that seems to be a trend across the world." If you want to flail around in evolutionary psychology, fine, so long as you think it is solid work. Bring up animal examples, if necessary; we're still primates, after all.
Introduce the concept of the faux pas (you can call it what you like, so long as it has a non-threatening sound. "Social boo-boo" works, too.)
Here's an example: "I will love you no matter what age you are, but it is inappropriate for you to sit in my lap because you are significantly heavier than your little brother and my legs would ache. Also, you are approaching puberty, so contact with certain regions of my body becomes less appropriate. You did not hurt me or do anything bad, it is just a faux pas. I am your aunt and I love you; if you have questions, you can always ask me to talk about them in private." Further explanation may be required. Whom am I kidding? Further explanation will happen, at recursive length.
Now that you have told him what not to do, introduce what to do. Some people like a casual shoulder bump, or a light hand-squeeze from the kids, or whatever. Since he is trying to be affectionate, encourage it and provide a positive outlet for it.
If he's into science, you can introduce him to interesting science facts about people's social behavior. Example: take this study and simply summarize it. "Did you know people in the United States are most comfortable with a two-foot distance apart? It varies by country and person, but that's the average." If possible, grab the Seinfeld "Close Talker" episode and show him a bit for reference. Ask him why he thinks people have "personal space." Do animals have personal space? Why?
In that example, you've introduced a helpful guideline, shown its constancy not just across the people he knows but all the way down through most mammals, and then asked him to engage his reasoning about social guidelines. The latter part is just as important as giving him what can seem to be totally arbitrary "rules" about people.
Many schools offer social clubs wherein children a little older than that learn how to do such basic things as shake hands, ask someone to dance (or be asked), all according to courtly, old-fashioned rules. This might appeal to him.
Never lie. You can say "I do not want to talk about that, the subject makes me feel uncomfortable," if you want to get away from something, but inconsistency deeply troubles most of the autistic spectrum types I've known, like having a cat which suddenly turns into a dog on Tuesdays, except when the moon is full, or your left big toe hurts, and also sometimes for no reason you can discern. Oh, and it may be a rabbit when you're out of the room. It can bother them quite a bit.
All of this will depend wildly on how smart he is and how differently-wired he is, so you'll be playing it by ear, but mostly by sympathy.
posted by adipocere at 2:16 PM on August 31, 2009 [1 favorite]
Second, you'll have to ditch "who you are." The most important part of dealing with someone who is, to coin a phrase, differently-wired is to accept that you have your own wiring you came with and that, if they aren't able to come to you, you must go to them.
Read books, even (or perhaps especially) fiction: I'm sure you've seen The Curious Case of ... but I also recommend The Speed of Dark for a book that's set as near-future sci-fi, but is really about how people with an autistic spectrum disorder who are still functional can get along, if they are allowed to. Imagine if you were wearing very thick glasses which made it impossible for you to see someone's facial expressions — what would your world be like if that were permanent? What if you could no longer hear tone of voice?
Your own discomfort is something you will have to laugh off, ignore, etc., A friend who is a nurse recounts numerous incredibly inappropriate things people do and say while going under anesthesia, everything from "you're pretty *facetouch*" to out and out breast-grabs, from folks who are polite and normal when they're not being gassed up with whatever. The nurses, by and large, laugh it off by putting some distance on it.
Explain things, verbally, and give some clear examples. Give reasoning. Because is never a reason. Neither is "that's just the way things are." You might say, "That's what the majority of the people in this culture are comfortable with" or "that seems to be a trend across the world." If you want to flail around in evolutionary psychology, fine, so long as you think it is solid work. Bring up animal examples, if necessary; we're still primates, after all.
Introduce the concept of the faux pas (you can call it what you like, so long as it has a non-threatening sound. "Social boo-boo" works, too.)
Here's an example: "I will love you no matter what age you are, but it is inappropriate for you to sit in my lap because you are significantly heavier than your little brother and my legs would ache. Also, you are approaching puberty, so contact with certain regions of my body becomes less appropriate. You did not hurt me or do anything bad, it is just a faux pas. I am your aunt and I love you; if you have questions, you can always ask me to talk about them in private." Further explanation may be required. Whom am I kidding? Further explanation will happen, at recursive length.
Now that you have told him what not to do, introduce what to do. Some people like a casual shoulder bump, or a light hand-squeeze from the kids, or whatever. Since he is trying to be affectionate, encourage it and provide a positive outlet for it.
If he's into science, you can introduce him to interesting science facts about people's social behavior. Example: take this study and simply summarize it. "Did you know people in the United States are most comfortable with a two-foot distance apart? It varies by country and person, but that's the average." If possible, grab the Seinfeld "Close Talker" episode and show him a bit for reference. Ask him why he thinks people have "personal space." Do animals have personal space? Why?
In that example, you've introduced a helpful guideline, shown its constancy not just across the people he knows but all the way down through most mammals, and then asked him to engage his reasoning about social guidelines. The latter part is just as important as giving him what can seem to be totally arbitrary "rules" about people.
Many schools offer social clubs wherein children a little older than that learn how to do such basic things as shake hands, ask someone to dance (or be asked), all according to courtly, old-fashioned rules. This might appeal to him.
Never lie. You can say "I do not want to talk about that, the subject makes me feel uncomfortable," if you want to get away from something, but inconsistency deeply troubles most of the autistic spectrum types I've known, like having a cat which suddenly turns into a dog on Tuesdays, except when the moon is full, or your left big toe hurts, and also sometimes for no reason you can discern. Oh, and it may be a rabbit when you're out of the room. It can bother them quite a bit.
All of this will depend wildly on how smart he is and how differently-wired he is, so you'll be playing it by ear, but mostly by sympathy.
posted by adipocere at 2:16 PM on August 31, 2009 [1 favorite]
I've worked with autistic kids in public schools for over twenty years. Many high functioning autistic and Asperger's kids are very rule bound. One method of teaching appropriate social skills and enforcing boundaries is to make a rule out of it. For instance, in the situation you described you could state: "the rule is, 3 year olds can sit in an adult's lap, ten year olds shake hands." Practice the skill with him and be consistent, he'll pick it up.
posted by Zebtron at 4:00 PM on August 31, 2009
posted by Zebtron at 4:00 PM on August 31, 2009
I work with a special education class, so I know this can be a difficult transition for children with disabilities of this sort. My advice to you is to explain very truthfully and straightforward with your nephew that he is becoming an adult and as an adult we don't sit on our aunt's lap or snuggle like little children. You should explain a good way to express his feelings for you appropriately, but you should do it as lovingly and I stress again,a truthful way, what you expect from him as a new adult. A lot of children with these issues need as straight an explanation of why things are changing, and what to expect from the new social rules they are expected to follow. Remember that for children with these disabilities that hamper normal expression of feelings, that physical shows of affection may be the easiest way for him to express his happiness, so give him new choices that incorporate physical expression. High fives, sideways hugs, and long silly handshakes may help him still express himself without relying on verbal exchanges.
good luck!
posted by donabean at 5:38 PM on August 31, 2009
good luck!
posted by donabean at 5:38 PM on August 31, 2009
Count me in as another one who still enjoys big squeezy hugs from her aunt, and I am in my thirties and she's in her sixties. And she's three inches shorter than I am and I outweigh her by about about seventy five pounds.
My oldest nephew also has autism. Right now, he's not quite five, so I'm still big enough to man-handle (aunt-handle?) him. I think my family is a lot more touchy-feely than yours is; it is not uncommon for an adult to sit on another adults laps in a non-sexual manner, or to kiss briefly on the lips.
Why do you feel that it's inappropriate? It clearly makes you uncomfortable, can you pinpoint why?
I think that if he's seeking out physical contact (and not in the bad!touch way) with another person, I would count that as a win. It can be challenging to for my oldest nephew to realize that other people even exist, even when his younger (neurotypical) brother is trying to cling to him, so when he goes looking for touch, it's pretty awesome.
posted by crankylex at 6:53 PM on August 31, 2009
My oldest nephew also has autism. Right now, he's not quite five, so I'm still big enough to man-handle (aunt-handle?) him. I think my family is a lot more touchy-feely than yours is; it is not uncommon for an adult to sit on another adults laps in a non-sexual manner, or to kiss briefly on the lips.
Why do you feel that it's inappropriate? It clearly makes you uncomfortable, can you pinpoint why?
I think that if he's seeking out physical contact (and not in the bad!touch way) with another person, I would count that as a win. It can be challenging to for my oldest nephew to realize that other people even exist, even when his younger (neurotypical) brother is trying to cling to him, so when he goes looking for touch, it's pretty awesome.
posted by crankylex at 6:53 PM on August 31, 2009
All of the advice here is very good. If your nephew's anything like my younger brother (who's about to turn 21 and has asperger's) he'll probably be embarrassed and frustrated when you introduce corollaries to his rules (it's okay for 3 year olds to sit on adults' laps, but not 10 year olds) because he thinks that means he's done something wrong. Be prepared for him to possibly shut down. Don't lose your sense of humor and keep the conversation light. It's going to be difficult if you feel uncomfortable or angry because he'll notice that.
I'm usually successful with my brother when we negotiate some kind of plan at the end of the conversation. Like other people have suggested, I'd recommend you two come up with some sort of special thing between you to substitute for the hugs and tickles. High fives, fist bumps, arm squeezes, etc. That way he doesn't feel like he's left out in the cold when he sees you tickling the younger kids. Make sure you give him lots of high fives for awhile to cement the special act and let him know you're not punishing him because he broke one of the rules he didn't even know about.
My family's developed a very specific pattern for these types of conversations with my brother. Tone of voice, location, flow, etc. are all part of the routine that help him recognize "this is one of those conversations." I think it helps him know when to listen and gives him cues about the ways he can respond. This was something that developed organically, but you might want to see if your sister and brother-in-law have something similar. It might help you and your nephew get over the initial awkwardness of the conversation.
posted by lilac girl at 7:59 PM on August 31, 2009 [1 favorite]
I'm usually successful with my brother when we negotiate some kind of plan at the end of the conversation. Like other people have suggested, I'd recommend you two come up with some sort of special thing between you to substitute for the hugs and tickles. High fives, fist bumps, arm squeezes, etc. That way he doesn't feel like he's left out in the cold when he sees you tickling the younger kids. Make sure you give him lots of high fives for awhile to cement the special act and let him know you're not punishing him because he broke one of the rules he didn't even know about.
My family's developed a very specific pattern for these types of conversations with my brother. Tone of voice, location, flow, etc. are all part of the routine that help him recognize "this is one of those conversations." I think it helps him know when to listen and gives him cues about the ways he can respond. This was something that developed organically, but you might want to see if your sister and brother-in-law have something similar. It might help you and your nephew get over the initial awkwardness of the conversation.
posted by lilac girl at 7:59 PM on August 31, 2009 [1 favorite]
encouraged Alex to try and pay attention to the patterns of others
The problem with this method is that many Aspergers can't decode the underlying social meaning of other peoples actions, and often ends up with out-of-place mimics. They need somebody to perform and provide the analysis and distill it into a usable rule.
posted by flif at 12:09 PM on September 2, 2009
The problem with this method is that many Aspergers can't decode the underlying social meaning of other peoples actions, and often ends up with out-of-place mimics. They need somebody to perform and provide the analysis and distill it into a usable rule.
posted by flif at 12:09 PM on September 2, 2009
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Before they left, the parents asked if I would be willing to babysit the child of their friends, who they said was "mentally not-so-right," while pointing at their own heads.
This sweet, sweet girl turned out to be my own age. She spent the entire time—the entire time—making stabbing attempts at courtship. She was legitimately hitting on me, because she viewed me as her peer and thus a prospective mate.
I still have no idea what kind of illness afflicted her, but she displayed the most significant human need, or the most significant one when you are ten, twelve, fifteen: the ability to be normal.
That was what I was willing to give this girl—I never returned her advances, but I thanked her while moving around the house a lot—and it is all you can, and should, give your nephew.
posted by trotter at 1:22 PM on August 31, 2009