"Normalizing" the Aspergers child or adult - more harm than good?

[Dancing David]

That's what we eventually figured out through both trial and error, and through input from our psychologist.

My kid learns far better through social stories and through contrived circumstances where he can practice the appropriate responses without being in an emotionally charged situation.. basically learning it through repetition and "laying down the neural pathways" as the psychologist puts it. So when the situation is more real and emotionally charged (either through conflict, or fun, or whatever), he's more likely to behave as was practiced.

We were going crazy previously trying to teach him as most parents teach their kids and getting nowhere.

Social stories rock! They are a tremendous tool! Sometimes so do the visual tag boards, but the kids I see are very heavy on the autism scale, my wife as a social worker tries to run groups for the asperger's kids amd she sets them up with a lot of supports. especially a 'break time' if they need it , as well as helping the teachers understand that difference in coping skills.

 

[Dancing David]

I agree with the OP.

I disagree with the poster whose posts I no longer see except when someone quotes them.

I don't think that Asperger's is a disease, I think that it is an atypical brain organization that can be extremely beneficial, extremely debilitating, or (usually) somewhere in between. I've been reading posts by many with Asperger's whose lives are far less joyful and successful than mine.

Several of the best parts of me are due, I think, to my having Asperger's, but much of my life has been... suboptimal, and parts have been hellish. I don't think Asperger's is a disease to be cured but rather a syndrome to be understood and, for those whose lives are damaged by it, remedied.

Rather than speak of 'symptoms', I like to speak of 'traits', for it isn't always obvious whether a trait is beneficial or detrimental, desirable or not.

Many of the times that having Asperger's has interferred with happiness, it was due to my being coerced into trying to fit in and be like others when that wasn't comfortable (or seemingly possible) for me. Other sources of unhappiness have been due to Asperger's-comorbid disorders such as OCD, general anxiety disorder, and depression.

Nicely put!

The development of atypical coping skills is the tough one in schools, some teachers just don't get it.

Now pallaitive treatment of symptoms can help some people with aspergers, ie their social anxiety is debilitating.

But you are right they are traits of neurological expression, and usually have some of the best senses of humor that I have encountered.

 

[Dancing David]

I don't know what forced experiences you're talking about. Is this just the stuff other kids do, or were you put through some kind of additional stuff that most weren't, in an attempt to treat your "problem"? If the latter, then I can't comment on whether that kind of treatment is a mistake because I've never even heard of it, much less gotten any details about it. But if it's the former, then it wasn't intended to fix a problem, it was just standard procedure, just like for everyone else. And in that case, your issue with it is that some kind of special exceptions/exemptions should be made for kids like you but weren't; that kids like you should be let out of doing what everybody else does. But if that's what you want or recommend, it doesn't fit together with your assertion that there's nothing wrong with having your "traits". Things that aren't a problem don't need special treatment to solve them.

I think that accomodation is a healthy trend, but it takes advocacy. Partcipating in a play as a narrator for example, might suit some people.

The students I have worked with have real problems with over stimulation and sensory issues in general. So when we had to work in teh hallway at one point, it was a disater for one of them, even the light fixtures became a source of focus.

 

[temporalillusion]

Yeah over stimulation and a bit of sensory are something we have to deal with a lot, but sometimes the solutions are pretty easy. When he was younger and they had "circle time" he didn't do very well at all, but we found that it was the stimulation of proximity that pushed him over the edge.. we got him to sit in a chair just outside the circle, close enough that he could still feel part of it but the removal of having two kids right there beside him was enough to go from perpetual disruption to engaged at an appropriate level.

Self regulation is still the biggest thing.

 

[Dancing David]

I certainly did not and do not mean to imply that there is no distinguishable difference between those diagnosed with learning and social adaptation issues and people not diaganosed that way. Perhaps I am improperly extrapolating from my own, and the related experiences of many friends and acquaintances, but I don't know anyone who intuitively/naturally "gets these things," it only comes through a lot of embarassing, intimidating and distressing exprience of doing and learning. Generally this starts quite young and extends into and through early adulthood.

I did not mean to argue with you.

Autism is different, it is very different, in scope, in magnitude and in all ways. less so for the 'light' end of the spectrum, but it is not the same.

I am very serious, a person with severe autism needs to be trained to look at human faces when they are young, they are neurologically different.

Their experience anything but normal. Regardless of what your experience may have been, you know what a smile means, you know what the rsising inflection means, you understand that pace and phrasing of language.

Autism is very different, and it is not what you are talking about.

I'm sure there are conditions that complicate this process, but exposure to the situation and processes would seem an essential part of learning to cope and deal with such situations, regardless of how uncomfortable or reluctant one is to be in such situations (and my point was, that most everyone goes through these same feelings and distresses regardless of whether or not they have been diagnosed with these problems).

that is not what I am talking about, it is very different then that.

The goal, afterall, is not for everyone to become gregarious social wizards, but merely to get people to the point where they can cope with and handle everyday situations with relative aplomb, and part of that involves becoming desensitzed to the situations.

I suggest you read about how autism effects the lives of people, when I say they do not learn the social cues, I mean exactly that. This is very different than your standard four year old. Seriously this is a whole other thing. You are talking about the advanced transactions of social exchange, that is like sentences and words in social exchange. i am talking about people who do not have the alphabet, some children with autism need to be trained to pay attention to faces, that is normal behavior for a four years old.

You are most likely talking about advanced social exchanges at a whole different level.



I am not arguing, I am saying that this a whole different thing.

 

[Dancing David]

Yeah over stimulation and a bit of sensory are something we have to deal with a lot, but sometimes the solutions are pretty easy. When he was younger and they had "circle time" he didn't do very well at all, but we found that it was the stimulation of proximity that pushed him over the edge.. we got him to sit in a chair just outside the circle, close enough that he could still feel part of it but the removal of having two kids right there beside him was enough to go from perpetual disruption to engaged at an appropriate level.

Self regulation is still the biggest thing.

Sweet, that distance and spacing can be important, it varies so widely. I am glad you and him figured it out.

 

[Trakar]

I did not mean to argue with you...

Understood and accepted, and I'm not arguing with you, especially with the focus on autism as opposed to Asperger's. I guess I am just trying to clarify and categorize my own understandings more than challenge or dispute the understandings of others. To my understanding, Asperger's is not just a mild form of autism, but is rather a different issue all together, which is what initially led to it's seperate categorization in the old DSM-IV (and in Europe for most of the last century). This isn't to say that there are not some symptom similarities, but in many fundemental ways they seem to be very different disorders and treating them as aspects of the same distinction due to some overlap of symptoms at the mildest end of the autism spectrum of expression seems improper to my understandings.

 

[Zelenius]

I don't know what forced experiences you're talking about. Is this just the stuff other kids do, or were you put through some kind of additional stuff that most weren't, in an attempt to treat your "problem"? If the latter, then I can't comment on whether that kind of treatment is a mistake because I've never even heard of it, much less gotten any details about it. But if it's the former, then it wasn't intended to fix a problem, it was just standard procedure, just like for everyone else. And in that case, your issue with it is that some kind of special exceptions/exemptions should be made for kids like you but weren't; that kids like you should be let out of doing what everybody else does. But if that's what you want or recommend, it doesn't fit together with your assertion that there's nothing wrong with having your "traits". Things that aren't a problem don't need special treatment to solve them.

I'm not sure how much more clearer I could have been with my use of the word "forced". And yes, my parents did think signing me up for the soccer team was a terrific idea since it would help me overcome my "issues" and learn to be part of a team. It was a form of "treatment". This experience made me not want to be part of a team or socialize and made me very resentful toward my parents and teachers who thought team sports were wonderful, especially for helping to "normalize" kids like me. I was always the worst player on the team. I can still remember the euphoria I felt all the times a soccer game was canceled due to the rain.

In this day and age, I am not sure why society pushes this on kids who so obviously feel extreme discomfort(in my case, to the point of vomiting and extreme anxiety and resentment), when there are plenty of "normal" kids who love team sports - let's leave team sports to those who love it and get something out of it. Parents also trying to force their kid to be friends with some other kid is also ridiculous and counterproductive.

Maybe I also didn't make it clear that whether or not aspergers is problematic is very context dependent. This often makes it very tricky, especially if selective mutism is involved. Society's overvaluation of certain social skills puts too many aspergers children into situations in which they look like they need "treatment". And there are all too many do-gooders out there who love "fixing" others.

And sure I have problems, but who doesn't? It seems the gifts I have are part of the same complex that explains my social ineptness and extreme sensitivity. And we are not in need of "special" treatment, just different treatment, we need to be understood on our own terms and shouldn't be expected to conform to society's expectations when we are not harming ourselves or others.

I believe aspergers children should generally be left alone, so long as they can communicate their most basic needs with those they trust, especially the gifted ones. They will most likely learn to cope and to socialize on their own when the opportunity arises. Their talents should be nurtured. It is because I believe that extreme withdrawal from society and extreme shyness/poor social skills are bad things, that doing things like forcing aspergers children into distressing social situations that make them feel very uncomfortable that they withdraw even more, are bad things. It's all about finding the proper balance to fit an individual's unique situation. Let's stop the foolish expectations and conformity.

Besides just leaving them alone, I offer no solutions except to try to view high functioning autistic spectrum children as being just "different" and not diseased or deserving of treatment(unless they have comorbid conditions, which ultimately may be due to forced socialization attempts which failed). I prefer optimizing them within the confines of what they are, to "normalizing" them, which is based on a flawed model of "normalcy"(if sports are good for kids then all kids should play sports and if they don't like it then something is very "wrong" with them). I am not a parent or a psychologist, but this is my opinion based on my experiences and the experiences of others.

 

[CelticRose]

Yes.

Helping kids (and adults) learn how to deal with "normals" is one thing. Forcing them into activities that cause them nothing but distress is another.

"Normalize" obviously doesn't work, but I think it is wise to work with the child to teach them coping skills and social skills.

I agree with the OP.

I disagree with the poster whose posts I no longer see except when someone quotes them.

I don't think that Asperger's is a disease, I think that it is an atypical brain organization that can be extremely beneficial, extremely debilitating, or (usually) somewhere in between. I've been reading posts by many with Asperger's whose lives are far less joyful and successful than mine.

Several of the best parts of me are due, I think, to my having Asperger's, but much of my life has been... suboptimal, and parts have been hellish. I don't think Asperger's is a disease to be cured but rather a syndrome to be understood and, for those whose lives are damaged by it, remedied.

Rather than speak of 'symptoms', I like to speak of 'traits', for it isn't always obvious whether a trait is beneficial or detrimental, desirable or not.

Many of the times that having Asperger's has interferred with happiness, it was due to my being coerced into trying to fit in and be like others when that wasn't comfortable (or seemingly possible) for me. Other sources of unhappiness have been due to Asperger's-comorbid disorders such as OCD, general anxiety disorder, and depression.

These.

I am very much against the current prevailing belief that HFA & Asperger's Syndrome are horrible diseases that must be treated by turning the autistic person into a neurotypical. There needs to be more education and understanding on both sides: autistic people need to be taught basic social and coping skills while neurotypicals should be taught to accept autistic people as they are and not to try to force them to conform to neurotypical standards.

Just today I was reading a blog post discussing the double standard that autistic people often experience when dealing with neurotypicals. The autistic person is expected to bend over backwards to make the neurotypical person comfortable, but if the autistic person is made uncomfortable by the neurotypical's behavior, then it's the autistic person's problem, not the neurotypical's.

Underlying all the statements about perspective taking are a series of unequal assumptions. It is expected that “normal” folks should not be expected to easily understand autistic folks; this inability to intuitively “tune into” our perspectives, thoughts, and feelings is simply considered natural, and not evidence of an empathic failure. But the same rules do not apply to autistic people. It is expected that autistic folks should be able to easily understand “normal” folk. Our inability to intuitively “tune into” their perspectives, thoughts, and feelings is considered unnatural — evidence not simply of an empathic failure, but of a condition defined by empathic failure.

You’ll excuse me if this double standard does not sit well with me.

http://www.journeyswithautism.com/2011/08/09/a-critique-of-the-empathy-quotient-eq-test-part-2/

 

[Dancing David]

Celtic Rose, that is sad.

Accept people as they are, wouldn't ask someone with CP to not have intention spasms.

 

[Zelenius]

Just today I was reading a blog post discussing the double standard that autistic people often experience when dealing with neurotypicals. The autistic person is expected to bend over backwards to make the neurotypical person comfortable, but if the autistic person is made uncomfortable by the neurotypical's behavior, then it's the autistic person's problem, not the neurotypical's.

This has been my experience also. I don't know about autistics in general(the OP mainly concerned high functioning austistics and aspergers), but the idea that high functioning autistics(HFAs)/aspergers people have less empathy is mostly rubbish. No two people are alike when it comes to empathy, and this is as true of neurotypicals as it is of HFAs. It's not that we don't feel empathy, it's that we often do not know how to express it, when to express it or where to express it in a way that satisfies neurotypicals; maybe we don't feel it in certain contexts but will feel it in others. We are also usually overstimulated and overloaded with other emotions at the same time we may be feeling empathy. Most importantly, maybe we are fine just feeling empathy but not expressing it. It may feel appropriate for us to act this way, but not for others.

Another issue I would like to get out of the way is this myth that HFAs do not know how to have "fun". Too many neurotypicals want to define what is "fun" or not "fun" for everyone, and if you disagree, then something is obviously very wrong with you. Their idea of "fun" is very often about loud parties, live music, dancing, anything involving a lot of socializing.

It goes without saying that most HFAs aren't into such things. They either find these activities boring, pointless or mentally exhausting. But they may have a ton of fun working on home electronics projects, doing artwork, playing chess or writing computer programs, among other things. Many neurotypicals scoff at the idea than any of these activities are "fun", and sometimes do what they can to "fix" the HFA to appreciate parties and loud music. And it's not just HFAs who hate parties, since plenty of neurotypicals do as well.

And this is just like the double standard you brought up earlier - how many HFAs try to convince neurotypicals to take up home electronics or studying advanced calculus or other "intellectual" pursuits to "have fun"?

It's ridiculous how neurotypicals think they are doing us a favor by inviting us to their party - in a way it's really just a form of "treatment".

I am willing to accept the idea that there are potentially as many different kinds of "fun" in this world as there are people - it's about time that neurotypicals, with their supposedly heightened sense of empathy do as well.

 

[alfaniner]

This has been my experience also. (snipped the rest)

Amazingly pertinent post. At parties, it's not ever so much about myself having fun, but enjoying that others are.

 

[Complexity]

Zelenius - Thank you for your posts. I very much agree with you.

Thanks to several others that seem to get it.

 

[Paul C. Anagnostopoulos]

I find it interesting that in this age of appreciating differences we are hell-bent on making everyone exactly the same.

~~ Paul

 

[CelticRose]

This has been my experience also. I don't know about autistics in general(the OP mainly concerned high functioning austistics and aspergers), but the idea that high functioning autistics(HFAs)/aspergers people have less empathy is mostly rubbish. No two people are alike when it comes to empathy, and this is as true of neurotypicals as it is of HFAs. It's not that we don't feel empathy, it's that we often do not know how to express it, when to express it or where to express it in a way that satisfies neurotypicals; maybe we don't feel it in certain contexts but will feel it in others. We are also usually overstimulated and overloaded with other emotions at the same time we may be feeling empathy. Most importantly, maybe we are fine just feeling empathy but not expressing it. It may feel appropriate for us to act this way, but not for others.

I agree completely, and from my conversations with people across the entire autism spectrum, I would say that goes for all autistic people.

The blogger I quoted above, Rachel Cohen-Rottenberg, has written an excellent post about the different types of empathy and the myth that autistic people lack empathy. She's also started a site devoted to debunking this myth.
http://www.journeyswithautism.com/2011/06/25/on-the-matter-of-empathy/
http://www.autismandempathy.com/

Another issue I would like to get out of the way is this myth that HFAs do not know how to have "fun". Too many neurotypicals want to define what is "fun" or not "fun" for everyone, and if you disagree, then something is obviously very wrong with you. Their idea of "fun" is very often about loud parties, live music, dancing, anything involving a lot of socializing.

It goes without saying that most HFAs aren't into such things. They either find these activities boring, pointless or mentally exhausting. But they may have a ton of fun working on home electronics projects, doing artwork, playing chess or writing computer programs, among other things. Many neurotypicals scoff at the idea than any of these activities are "fun", and sometimes do what they can to "fix" the HFA to appreciate parties and loud music. And it's not just HFAs who hate parties, since plenty of neurotypicals do as well.

And this is just like the double standard you brought up earlier - how many HFAs try to convince neurotypicals to take up home electronics or studying advanced calculus or other "intellectual" pursuits to "have fun"?

It's ridiculous how neurotypicals think they are doing us a favor by inviting us to their party - in a way it's really just a form of "treatment".

I am willing to accept the idea that there are potentially as many different kinds of "fun" in this world as there are people - it's about time that neurotypicals, with their supposedly heightened sense of empathy do as well.

QFT

I find it interesting that in this age of appreciating differences we are hell-bent on making everyone exactly the same.

~~ Paul

Very true. And very sad. Imagine how boring this world would be if everyone were exactly the same.

 

[andyandy]

That's so strange, I was pondering this very question (somewhat randomly) today.....

woooooooooooo - maybe we've got a connection

I suppose the idea is that by getting autistic children more used to "normal" situations, they will be better equipped to live in society when they leave school. I did some voluntary work at an autistic school (for kids with very severe autism), and one of the primary focuses of the school did seem to be various forms of forced socialisation - ie interacting with the other kids/teacher. Most of the time the kids just wanted to be left alone....playtime was an eye-opener - 30 odd kids wandering around the playground on their own - each in their own little world

 

[Mark6]

I find it interesting that in this age of appreciating differences we are hell-bent on making everyone exactly the same.

If it makes you feel any better -- "hell-bent on making everyone exactly the same" was ALWAYS the case. In fact, it is less prevalent now than ever. How long ago left-handed children had their left hand tied down in order to teach them to write "like everyone else"?

 

[Dancing David]

That's so strange, I was pondering this very question (somewhat randomly) today.....

woooooooooooo - maybe we've got a connection

I suppose the idea is that by getting autistic children more used to "normal" situations, they will be better equipped to live in society when they leave school.

Mainstreaming is more about creating tolerance in class rooms than forcing autistic children to change. They are getting used to having someone with different skills and abilities, who may interct differently.

So there may be quiet corner for example.

 

[Zelenius]

The blogger I quoted above, Rachel Cohen-Rottenberg, has written an excellent post about the different types of empathy and the myth that autistic people lack empathy. She's also started a site devoted to debunking this myth.
http://www.journeyswithautism.com/2011/06/25/on-the-matter-of-empathy/
http://www.autismandempathy.com/

Thanks for the links, they were very informative. It is amazing how many myths we have to debunk first before trying to explain what Aspergers really is. Hopefully more people will understand, and more research will be done to better understand what is really going on here.

 

[INRM]

I have asperger's syndrome. I've learned how to become more normal. I still retain the positive characteristics that the disorder brings (attention to detail, photographic memory, intense interests in certain subjects and so forth)