elmindreda on the social skills of presumed normal people
Random Reminiscing Ramblings: Some rules I live by
Once upon a time Autism Diva exchanged a few friendly e-mails with David Kirby. Autism Diva was trying to get him to see that some particular things he was saying were absolutley wrong. Of course, lots of people say things that are wrong, it's just that some people who say wrong things absolutely understand how to manipulate public opinion by saying wrong things in the right way and some of them even run Public Relations businesses. David Kirby and Sally Bernard (co-founder of SAFE MINDS and president of Cure Autism Now) are two who have done this for a living. In one of the e-mails to David Kirby, Autism Diva pointed out that it was wrong of him to use the expression, "pushed over the edge into the HELL that is autism." He wrote back and said that he had just received an e-mail from a mom thanking him for something and explaining how brutally her son had been bullied by a next door neighbor boy. Kirby added that that sounded like "hell" to him.
Well, no one has to explain the horror of being a victim of bullying to Autism Diva, though it sounds like perhaps Kirby had never experienced it. Kirby's point was apparently that if the child he described hadn't been vaccinated with a thimerosal containing vaccine his neighbor would have turned into a living torture device, or that that torture would not have been visited on this particular child.
Bullying was one of the things that Autism Diva discussed with Dr. Uta Frith when Frith was at the MIND institute recently. Frith basically said that being a victim of bullying is nearly universal for autistics and Autism Diva responded that being bullied was "diagnostic" of and autism spectrum disorder, meaning that it could be listed as a criteria for getting a proper diagnosis of an ASD.
But bullying is not a disease of autistics it's a disease of otherwise "normal" people. It might be an outgrowth of "normal" development in some people, or maybe it's the result of a sick and diseased culture that allows it. It's possible to be autistic and not be bullied in school, Alex Bain, who lives in on Prince Edward Island, apparently was never bullied in school, or it was so seldom and mild that no one noticed it. His mother, jypsy, describes Alex's school years as being quite positive and that his school mates as treating him like one of themselves.
Most autistics don't get to experience that level of "acceptance therapy", apparently elmindreda didn't get a lot of it in her school years:
Those are the "normal" world's social rules. Perhaps they are best summed up with, "You are a freak. We will hurt you. You will take it ad infinitum."
What would you do if you lived in a world with those rules and you were the "freak"? Would you withdraw? Would you want the right to withdraw? One of the best point elmindreda makes in her blog entry is that children need a place to escape to.
Autistic kids are described by their parents as having health problems and that is one reason why they want to cure autism, but how many of these health problems arise directly from being under nearly constant duress at school and in day-care situations? Even if there isn't bullying among a group of 3 year olds, there is still stress of unpredictability caused by the presence of other humans.
The late (and missed) Patty Clark said it well in describing the experience of being around lots of other people as an adult autistic:
The idea of "mainstreaming" autistic children is loaded with huge potential problems, one of them is the noise in a typcial classroom, the other is the bullying on the typical playground.
The idea of putting adult autistics to work in typical offices ... same thing.
Perhaps those problems can be worked around, but they won't be if they aren't recognized as being there at all.
Autism Diva
sheltering
Once upon a time Autism Diva exchanged a few friendly e-mails with David Kirby. Autism Diva was trying to get him to see that some particular things he was saying were absolutley wrong. Of course, lots of people say things that are wrong, it's just that some people who say wrong things absolutely understand how to manipulate public opinion by saying wrong things in the right way and some of them even run Public Relations businesses. David Kirby and Sally Bernard (co-founder of SAFE MINDS and president of Cure Autism Now) are two who have done this for a living. In one of the e-mails to David Kirby, Autism Diva pointed out that it was wrong of him to use the expression, "pushed over the edge into the HELL that is autism." He wrote back and said that he had just received an e-mail from a mom thanking him for something and explaining how brutally her son had been bullied by a next door neighbor boy. Kirby added that that sounded like "hell" to him.
Well, no one has to explain the horror of being a victim of bullying to Autism Diva, though it sounds like perhaps Kirby had never experienced it. Kirby's point was apparently that if the child he described hadn't been vaccinated with a thimerosal containing vaccine his neighbor would have turned into a living torture device, or that that torture would not have been visited on this particular child.
Bullying was one of the things that Autism Diva discussed with Dr. Uta Frith when Frith was at the MIND institute recently. Frith basically said that being a victim of bullying is nearly universal for autistics and Autism Diva responded that being bullied was "diagnostic" of and autism spectrum disorder, meaning that it could be listed as a criteria for getting a proper diagnosis of an ASD.
But bullying is not a disease of autistics it's a disease of otherwise "normal" people. It might be an outgrowth of "normal" development in some people, or maybe it's the result of a sick and diseased culture that allows it. It's possible to be autistic and not be bullied in school, Alex Bain, who lives in on Prince Edward Island, apparently was never bullied in school, or it was so seldom and mild that no one noticed it. His mother, jypsy, describes Alex's school years as being quite positive and that his school mates as treating him like one of themselves.
Most autistics don't get to experience that level of "acceptance therapy", apparently elmindreda didn't get a lot of it in her school years:
As an example, here are just a few of the things I learned during the training that my teachers didn't want me to miss out on:
• It's perfectly acceptable to call me strange, sick, weird, stupid, too smart, disgusting and many other things. These things mean that they don't want to play with me that day. However, they may want to play with me another day, as long as I don't complain about the things they called me the day before.
• Strangers may beat me up, throw things at me, steal or destroy my possessions or do almost anything else they may feel like doing to me, partly because I'm not good enough at recognising unfamiliar faces to be able to identify them afterwards, and partly because adults tend not to believe what I say anyway.
• Friends are those who tolerate having me around. A friend may at any time go back to being a bully and throw things at me. Any bully may also declare xemself my friend, at which point I must not mention any past treatment, since it will hurt xyr feelings (which is forbidden) or make xem go back to being a bully.
• Don't believe anything that anyone tells me unless I've verified it with at least two independent sources, since it's most likely yet another attempt to either make fun of me or get me into some sort of trouble. Also, if a person asks me to do something, it's most likely intended to cause me harm in some way.
• Spending time by myself is considered very provocative and is a valid reason to attack me, unlike trying to make contact with others, which is considered very provocative and is a valid reason to attack me.
• If I'm sad and crying and something makes me happy, I must not show it right away, since it will make people get angry with me, claim that I wasn't sad in the first place, and was only pretending in order to get attention. Instead, I must pretend that it's a slow, gradual process.
• If I'm allowed into a group, I know I'm only barely being tolerated. Any little mistake I make will be sufficient cause for exclusion. Any of the group's members tiring of me will be sufficient cause for exclusion. Nothing in particular will also be sufficient cause for exclusion.
• Even when I'm allowed to participate, I know that I'm not really considered a part of the group. Just because other people are allowed to say things and decide things doesn't mean I am. If it's a really friendly group, I may be allowed the role of 'cute mascot', but usually I'm merely temporarily tolerated.
• If I'm in pain, I must say "ouch" at the right moments and use a different tone of voice, or no one will believe me when I tell them that a particular injury actully hurts. I also absolutely cannot allow myself to laugh, regardless of how nervous I am about being believed.
• If someone says mean things to me, regardless of how hurtful or false, they can always be excused by saying that "they were only kidding". However, if I ever say anything that anyone interprets as mean, it can never be excused by something as irrelevant as the fact that "I was only kidding".
Those are the "normal" world's social rules. Perhaps they are best summed up with, "You are a freak. We will hurt you. You will take it ad infinitum."
What would you do if you lived in a world with those rules and you were the "freak"? Would you withdraw? Would you want the right to withdraw? One of the best point elmindreda makes in her blog entry is that children need a place to escape to.
If I had to choose a single sentence to summarise this entire entry, it would be this; if you're a parent, teacher or wossname, please make sure that your spectrum child has a refuge at school or wherever xe is. A place where xe can feel safe and not be at the mercy of the other children. I know that many fear that their child will miss out on important social skills training, but there are far better places for such things than a schoolyard.
Autistic kids are described by their parents as having health problems and that is one reason why they want to cure autism, but how many of these health problems arise directly from being under nearly constant duress at school and in day-care situations? Even if there isn't bullying among a group of 3 year olds, there is still stress of unpredictability caused by the presence of other humans.
The late (and missed) Patty Clark said it well in describing the experience of being around lots of other people as an adult autistic:
Right now, when I interact with people:
I have problems with speech.
** I have trouble understanding precisely what sounds I 'm hearing ** I also have problems getting the meaning of the words, even after I have established what the sounds, and therefore the words, "probably" are.
My compensation is to memorize loooong sound strings and retain them indefinitely. I mean "forever." I replay conversations in my mind over and over again, looking for more meaning, for months and years. I continue processing them in the background (like a computer printing in the background) while more speech sounds are coming in to me. This causes a measurable delay in my understanding of what's said to me. In addition, I have a measurable neurological delay in actually "hearing" sound.
One more communication problem I have is lack of the usual ability to screen out background noise and focus only on the speech I'm listening to.
The result of this and other problems understanding language causes me to often take in only the LITERAL meaning of the words. I just < don't have the ability to relate everything that I hear to all the conditions around me.
So -- would I enjoy a noisy cocktail party after a drink or two? Of course not. I would be overwhelmed and stunned by the noise and the intensity of interaction. This inability to benefit from the fun times of partying is an important part of my disability - my autism.
The idea of "mainstreaming" autistic children is loaded with huge potential problems, one of them is the noise in a typcial classroom, the other is the bullying on the typical playground.
The idea of putting adult autistics to work in typical offices ... same thing.
Perhaps those problems can be worked around, but they won't be if they aren't recognized as being there at all.
Autism Diva
sheltering
posted by Autism Diva at 12:26 AM
19 Comments:
"Autistic kids are described by their parents as having health problems and that is one reason why they want to cure autism, but how many of these health problems arise directly from being under nearly constant duress at school and in day-care situations?"
That's a very good point and a very important question. In my case, I'd say "lots". In a way, though, I welcomed them, as they gave me days home from school during the worst years.
Great post, both elmindreda & Diva, and very on my mind of late. We're getting ready to register our son for kindergarten, and want to put a foot down (without stepping on any powerful toes) NOW so that we can do our best to avoid this stuff (good luck, I know). He's been in an autism preschool classroom and thriving, but I have no idea yet what's available for kdg.. I'd really like to push the idea of some kind of "down time" every day (which is invaluable to him). I have no idea how that'll be received, but I'm thinking rolling eyeballs will be involved. If any of you who have "been there, done that" have chemical, mineral, & voodoo-free advice to offer, I'd love to read it. I'm just trying to formulate a plan.
Oh, and it's elmindreda, not Elmindreda.
Hi Autism Diva,
Firstly, thanks for your work. I've followed and linked to your posts for a while now. I linked to this one here:
http://publicaddress.net/default,2935.sm
And I've already had some appreciative emails from readers.
There was a study published here in New Zealand last year that reached the obvious conclusions about autistic children and classroom noise:
http://masseynews.massey.ac.nz/2005/Press_Releases/11-01-05.html
But I don't think "mainstreaming" is always a bad idea, if you have good support from your school. We have two (very different) aspie kids, and the younger one has just gone back to a new school after several months out of the system. Classroom noise was a big problem, but a more disciplined (and hence quieter) environment seems to be helping. He still struggles with the idea of doing things that don't interest him, but I think he's glad to be back, and feeling quite pleased with himself for handling it.
We've never had a serious bullying problem - in fact, we had more of an issue with his meltdowns scaring *other* children. He's on an SSRI now, which was a scary step, but the right one in the end. We didn't realise until it began to ease what a huge state of anxiety he was in - his skin used to be hot to the touch all the time, and it isn't now.
So anyway, I've learned a lot from reading adult autists like yourself. Thanks. And sometimes, school's okay ...
Cheers,
RB
waxhaw5,
Is there a professional involved in the case who could recommend a proper break every day? I'm thinking a psychologist, or an OT.
Unfortunately, schools can be rather pig-headed about not following these sorts of recommendations. And then they complain when the kidlets "act out".
Hi elmindreda,
Autism Diva thinks she fixed all the errors of erroneous capitalization in the blog entry. Thanks for pointing that out.
---
waxhaw5,
Jannalou works with school aged spectrum kids, she recommends (below here) to see if a professional could tell the school that your child needs "down time"...
Here's an anecdote. Autism Diva has a friend who was the classroom aide for an autistic boy for several years in a row. One day when he was in maybe 2nd grade and rarely talking, he was starting to get upset or something and when this happened the solution was for his aide to take him into a small room set aside for calming down. The aide was always supposed to stay with the boy in the room (some schools have been known to lock kids alone in glorified closet/prisons when they melt down, this was not the case here) , anyway, they had been in the little room for a while and the little boy started to talk about something he was interested in and he just kept talking. The aide didn't interupt him because he was in a good mood and haul him back out, but let him talk. She said she was so surprised that he had that much to say and could verbalize it apparently easily.
Not all school experiences are bad, it's just that it seems that most school experiences for autistics are bad. Alex Bain's experience was very good.
Watch for more advice here, but also consider asking Susan Senator and her readers on the Susan Senator blog and perhaps the autistic adults and parents on the Aut Advo Yahoo! group. There might be some peer reviewed literature on stress and autism that you could show the teachers... there's one from Blythe Corbett on high cortisol levels in autistic/asperger's boys who experienced stress. You might print out some stuff from Patty Clark's site autistics.cc and share with the school.
----
Russell Brown,
Thank you for linking to the Autism Diva blog. Autism Diva remembers that you have done that before and was very pleased then and is very pleased now. (-:
It's very nice to read that your child hasn't had a big problem with being bullied. Very nice. Sort of restores one's faith in humanity and in the possibilty of there being good schools. :-)
Alex Bain was mainstreamed and had very few concessions made to his being autistic and he thrived. Alex is absolutely "classically autistic" and used a laptop computer to communicate for much of his school work.
----
Thank you, everyone for the nice and helpful comments. :-)
Thank you both emindreda and Autism Diva. This was painful for me to read but not so painful as my son's living the reality you describe. I weep for his previous unhappiness while exulting in his present happiness.
You have my respect, which somehow seems totally inadequate. Thank you once more.
To Autism Diva,
I know I'm echoing Ballastexistenz now, but I tend to write about one thing or one aspect of a thing at a time, simply because that's how I work.
There were happy moments, too, some of them created by people who happened to understand what I needed just then. I didn't write about them because they weren't my focus, and because they were rare exceptions. Seeing the pattern of them, I was trying to explain ways to make those moments the rule and bullying the rare exceptions.
I didn't mean to imply that mainstreaming can never work, since it obviously can (go Alex et al), but instead highlight the very real dangers of it, so that they can be avoided.
Thanks, AD & jannalou! I appreciate the direction.
This is a good post. I struggle with the idea of "mainstreaming" for the same purpose. Am I an idealist to hope that one of the most important things we can do is to raise awareness for tolerance? This IS the ideal.
My son possesses so much joy. As I hold his cherub face in my hands and his smile beams and his eyes sparkle, I consider that this sheen may be diminished by the ignorance of others.
On a practical level, I have enrolled Adam in a small Jewish Day School where my other step-kids attended. It's mandate is non-tolerance of bullying -- that all students must accept others. I wonder sometimes if we can legislate tolerance -- if we can make some headway. It is difficult, I know.
I am always appauled by parents who want to cure their kids instead of thinking about their quality of life. I suppose they believe that quality of life only belongs to people like them.
Here's to taking it one day at a time, one teacher, one child, one school...in hopes to build a more tolerant world.
Estee
It's very nice to read that your child hasn't had a big problem with being bullied. Very nice. Sort of restores one's faith in humanity and in the possibilty of there being good schools. :-)
I confess, I'm saddened to read that our experience seems to be rare - or perhaps more so in the US. We're fortunate to have very supportive local schools with good pastoral cultures. Our problem has been more with what happens in the classroom - there are no ideal solutions there - but the schools our children attend are *much* safer places than those I went to.
Cheers,
RB
This whole topic pushes every one of my buttons and kudos to Ettina - Oh brother, I'd like to push this eloquent explanantion to every parenting list there is. of course I'm having an ongoing war with the husband who refuses point blank to believe that otherwise nice people are capable of this stuff. he just doesn't see it - well actually what he doesn't see is how his social wiring confers an immunity against it. I wrote on the AWARES site that the correct antidote to the nonsense spouted by Digby Tantam and for that matter Roger Meyer is a precise explanation of what happens when an autonomous person tries to interact with a world of social acculturation. As Ettina shows oh so clearly - it ain't pretty and yet it does not need to be that way beyond adolescence - kids are too dumb at that age to be working on anything beyond instinct. First and foremost there needs to be some open and frank admission of the way social relations really work - and that ain't pretty either. But if the sanitised and therefore largely inaccurate description of social dynamics that is currently fed to autistics were replaced by a little honesty then autistics could see very well what's really going on and devise methods that really work rather than the 'designed to fail' stuff they're given right now. Of course it's always possible that people are unaware that of the ways in which they react since they're in it so to speak. [/rant]
Hi,
Alyric, maybe you meant "kudos to elmindreda?" Though, Ettina surely has had her share of bullying.
There's some psychology literature on bullying, one thing that was discussed in Autism Diva's last social psych class was the finding that people who are friends, but not as close as marriage mates, will sabotage each other's performance on tasks in order to make themselves look better.
Mates tend to see themselves as a unit and so want to help the other to do better.
Anyway, if it's normal for friends to do subtle put downs and sabotage, it's obvious that members of the "outgroup" are going to tend to fare worse, overall.
There might be something in the literature on bullying that your husband might be impressed by...
Nice to see you, Alyric.
We're struggling with mainstreaming issues right now and since my son is only three, I'm not sure how much I can add to the argument for mainstreaming. He attends a small private inclusive preschool and really loves it there. When deedle walks through the door the entire class runs up to say hello and it's not because he's the "autistic kid". He's been at the school for a few months and although he's non-verbal, most of the kids in his class already know exactly what he's saying(if that makes any sense).
I am amazed at how maternal three and 4yr old girls can be, and how seemingly selfish little boys will suddenly offer deedle their favorite car to play with. I understand this is probably not a typical experience for most autistic kids, but I think this experience is just as important for my son as it is for his peers. I do wonder if he were to become part of their community for years to come, would they eventually bully him or protect him?
Peter Vermeulen had a very nice visual way of putting things like this (not as much out and out bullying, but general stressors). All kids have a 'glass of stress'. This starts filling up as soon as they come into school. For NT kids, some of the contents of the glass is emptied out at break times; for kids with ASD the glass fills up faster at break times. While other kids get 'time out' from stress, kids with ASD do not.
Hi Diva,
I posted a story about a study showing high-functioning kids with "better" social skills having more anxiety in social settings than those with "lower" social skills.
It's an interesting finding.
Bullying...taunting...name calling...ostracism...I recall what myson went through well...even now that he is out of school and doing wonderful on his own the nightmares still happen...imagine a 7th grader who was so fearful of school that he did not go to the bathroom or his locker all day...constantly being on the outside looking in...just wanting to be accepted...for those parents not in the school system...
learn your child's special education rights...the absolutely best website is www.wrightslaw.com...know before you go to any special ed meeting...
Fantastic post. I can relate to being bullied. Even though I wasn't diagnosed with Aspergers until I was 23, I guess the other kids picked up on the fact that I was strange. I was picked on from kindergarten all the way up through part of high school. I also agree on not mainstreaming autistics (to a point). The fact of the matter is, we're not neutrotypical, so we shouldn't have to act like one. That said, I do think it's important to learn how to function in a neurotypical world.
A very witty sum of your past experiences! I can relate clearly, having realized many of the same "truths" concerning other (rude) people.
One fact that I wish I had known earlier was that the bullying doesn't stop at childhood, no.
My parents do it sometimes, and it carries over into work. Managers and coworkers are those same people or the parents of such nasty little kids; it's a societal-pervasive problem.
I have bad memories come back during stressful times like bad bile but I force it down. Re-learning how to defeat these social blunders or at least stand up for myself today (without ever having properly learned how; my mom would say 'just do it, toughen up') is the hardest part, especially with resolving unwanted heated verbal conflicts without violence!
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