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Before I continue, I want to offer a PSA. The next few posts will likely be about having an ASD (Autistic Spectrum Disorder) child in a system in which a new principal was hired to completely squelch all problems with bullying. She was enormously successful, and in part I'm aware that my son's school experience was radically different from the experiences of many, many ASD children entirely because of the way she ran her school, dealt with the parents of her children, and supported her teachers.

But I can understand that as this isn't what I normally post, people might have zero interest in it, and for those new to this LJ because of the previous posts on reviewing and entitlement, I do apologize in advance.
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There are reasons my son had social difficulty. Understand that everything I'm saying at the moment we learned by trial and error and a lot of observation, because that's what we had at the time. At a certain stage of development, children really do think their parents know everything. This ends sometime between the ages of two and three for most neurotypical children, and at three and a half most children understand that this is not, in fact, the case.

My son did not develop this awareness until he was seven, going on eight.

I'm a writer. I'm a reader of SF and Fantasy. One of the things I've always loved about SF and Fantasy of a certain kind is the way the authors develop aliens and external cultures; they posit certain changes and then they work those changes through their characters, from the ground up. If they do it well, the character feels like a product of the culture. I loved those moments in books in which a totally made up word or phrase became fraught with meaning, and ultimately moving, because I had read that book, and had come to understand what those words meant. It was like going on a journey.

What I didn't expect was that those thought experiments would prove invaluable in the raising of my own child. But in their own way, they were, because my son didn't understand that the world couldn't read his mind. He didn't understand that what he knew, the events that occurred when we weren't around, weren't actually somehow transmitted to our parent-group-mind.

If you know, however, that your parents do already know everything, there are certain conversations you don't have with your parents; they're irrelevant at best. So imagine Michelle, trying to think like her child all the time. I mean, all the time. What does the world look like to an ASD child when that child believes that everyone knows everything he's experienced?

Probably pretty bad, actually. Take the example of the incident at school. My son did believe that the teachers knew he was being hit or picked on. He hadn't said a word about it, because he knew they knew. He was aware that every household had slightly different rules, and that made sense to him, because every house belonged to different people. But in school, the rules he was beginning to learn? That the teachers didn't care what happened to him. The fact that the other children told the teachers didn't mean anything; what he saw was: he gets hurt, the teachers don't care. He hurts someone--anyone--back and he gets the timeout.

What he was teaching himself, absent the understanding that the teachers did not in fact know what they couldn't see and he hadn't told them, was that he didn't matter. That the rules applied only to him and never to anyone else. They were unfair and he couldn't do anything about it.

This made him angry and upset, because this was so unlike the environment in which he lived. It was also, of course, untrue, but from his point of view and in his context, it was also true. In large part, our parental understanding of this came from considering - and constructing - a viewpoint based on the axiom. My husband and I would talk about this, stretch, test, apply our possible outcomes with his actual behaviour. Sadly, I'm not making this sound like fun. We didn't have lab notes or books; we didn't take physical notes. But time and again, we looked at possible outcomes of various decisions, stretching from Right Now to as far as we could see.

No one teaches us how to parent. It's very much a trial and error effort, and we frequently fall back into familial patterns with which we're familiar. We attempt to avoid all the pitfalls that scarred us in our own childhood--and doing that, we're probably bending over too far in another direction, invisible to us, that will cause scars in entirely new and different ways. There's nothing as deeply, viscerally important as the emotional and physical well-being of our small children, and out of that stress, many other factors become infinitely more stressful.

What did I know about my son by the time he had finished junior kindergarten?

He required consistency. I don't mean that he required religious consistency: If he woke up in the morning, he did not immediately need to see a purple shirt, or wear black pants, or eat certain breakfast foods.

No, he required consistency of household rules. By the age of two, if he had a meltdown, he could scream uncontrollably for hours. This was not, as you imagine, a great source of joy. But it was also not entirely voluntary; that much was clear. We learned to see it coming because if we could head it off early, we could curb it. If we couldn't, nothing brought him back; we had to wait it out.

So oddly enough, we chose our fights. No hitting people. No taking away their toys. No deliberate destruction of anything that isn't yours. i.e. do not harm others.

Inherent in consistency, however, are a set of rules that everyone in the household follows. Everyone had to adhere to those rules if they were to make sense as rules on their own merit.

For my own part, I also had: questions deserve answers. Any question that my son asks, I will answer to the best of my ability to explain at the level of his ability to comprehend.

You will notice that blind obedience is not actually listed in any of that, because it was never part of the household. My son had a ferocious imagination, of which only glimpses emerged. He needed to know what the rules for everything were, and what they were based in. Obedience for its own sake, in any situation, always implied threat, to him. Always. So "Because I said so" was literally (and to the amusement or disapproval of others) never said in our house.

Was this easy? Why no, no it wasn't. But the long-term results of imposing behaviour from above would not have been helpful to my son. So we didn't. And better yet! We had to abide by our own rules.

We did not, however, have to be perfect, because I explained to my son, always, that everyone--mommy, daddy, baachan, jiichan--has a bad day now and again. What I could not do, ever--and I know this because in a fit of tired, stressful near-withdrawal I almost did this once--was blame my anger on his behaviour. Or more precisely, I could not blame anything I did in anger on his behaviour.

I could be angry about his behaviour and I could make it clear that it had angered me--with words. I could not then do something--shout, scream, throw a hockey-stick off the porch (don't ask)--and blame the result of my anger on him.

Because that would be a game-changer, and it would be a bad one. So, if I did lose my temper and throw a hockey stick off the porch, I would then say "Mommy should not have done that. She needs a time-out." And I would go upstairs and sit in my room for twenty minutes trying to breathe. Which meant twenty minutes of peace and quiet, not a bad side-effect.

This, however, he understood. He could understand that I could get angry. He could understand that I could lose my temper. These are both things he himself experienced. I could not, however, without visible consequence, act out on that anger--because it was not acceptable for him to act out on his anger--without a timeout and an acknowledgement of my human fallibility.

So, he understood what the rules of the house were.

My sister also taught us both something important--entirely by accident--when he was less than a year old. She had a phrase that she sometimes used, and while she was changing him one night--and he was screaming because he totally hated to be changed--she said, loudly, "Okay, nephew, here's the deal. You are going to stop kicking and screaming, I am going to change you really quickly, and then we will go back outside and play with the cat."

He stopped screaming. She changed him in two seconds. She took him outside.

We were a little in shock, because we hadn't expected this to work. But…it did. She had her "here's the deal", and it became a phrase that I also began to use frequently. It was used for very specific circumstances, and applied to things that we considered normative preferences, but not rules. For instance, sometimes he wanted chocolate before dinner. He knew that chocolate wasn't part of dinner, but he wanted a piece, and he knew it wouldn't actually affect his appetite.

If we said no, it was a matter of our preference, because it clearly made no difference to safety or dietary functions. In his mind, we were then forcing our inconsequential preferences on him for no reason; it felt totally arbitrary to him. Arbitrary was always very difficult for our ASD child. So, this would be an instance in which we would compromise. Which is to say, we would let him have a piece of chocolate before the meal, and he would then peacefully eat the rest of the meal. He felt his desires were being considered (he gets a piece of chocolate) and felt that ours were being considered (not the whole bar, and he eats his dinner).

So, he required consistency, and he required some semblance of say or control in his own life. He required an explanation of what was about to happen, if something bad was about to happen. He hated an abrupt change of state. If we said "We're leaving now", no matter where we were, there was going to be Upset. If we said, "We're leaving in fifteen minutes", and then "ten minutes" and then "five minutes", there was no upset.

I think that at an early age, my son familiarized himself with a terrifying and non-sensical world by feeling as if he had some control in it (negotiation), and by requiring his endless explanations of everything (knowledge).

Had he not been able to do that? We would have probably had to schedule his whole life, the way ASD children's lives are often scheduled, because I think ASD children can substitute predictability and certain knowledge for control and safety.

Let me try that again. If you believe you have some say in your environment, the environment does not have to conform to all your expectations in order to feel like a safe one. If you do not believe you have any say, and you do not understand your environment at all, you will live in terror of every single little perturbation or deviation because you don't know what the results will be.

It is therefore vitally important, in all negotiations, to honour our side of the bargain. A child like my son, who agrees to a compromise, cannot have it broken willy-nilly. He requires honesty. If I fail to live up to my obligation, he will learn that he can't trust me.

If he can't trust his own parents, there is nothing that he will trust. And in the literal mind of an ASD child, there's not a lot of wiggle room. If you tell a neurotypical child never to lie, they might still understand why you said the burned remains of an aunt's desert were tasty. If you tell an ASD child not to lie, you'd better have made clear exactly what all the exceptions to this rule are--and why the exceptions exist--well in advance of using them.

I'm sorry this is so long, because I'm trying to do two things here, and I think I should probably have split them. Let me close with a list of things which made social interaction for my ASD child very difficult.

1. Laughter. Many children know what it means when someone smiles or laughs. My son knew what it meant when people he knew smiled or laughed. But in his logical mind, because we frequently laughed at different things, he had to learn what each particular case of laughter meant. He didn't generalize the idea of laughter and superimpose that generalization on other people.

2. Gender. Gender is actually frequently difficult for all small children. For my son it was difficult until about grade 3. What happened in grade 3? The girls all got tired of being referred to by male pronouns -- which he used for everyone, including his mother and his grandmother, even though he knew we were female. The second pronoun had no practical use for him because differentiating gender was something that made no sense in the context of his life. Since he had to learn individual behaviour individually, the dividing category had no meaning. People were already strange enough. He could tell you were female if you had breasts. He initially tried the breasts/long hair identifiers, but too many adults had long hair and no breasts, so that one didn't work.

3. Greetings. When my son was in grade one, he was invited to a birthday part. It was a class birthday party, so all of the kids were invited. He wanted to go. He was afraid to go. So I went with him. He was sitting in the hall taking his shoes off, and four of the kids came out to the hall (one of them shouting, "Hey, Daniel's here!" They all said hi, and…he didn't hear them. It was not until the end of the grade 2 school year that someone could shout "Hi Daniel!" and actually have half a chance of getting an answer. Often by the time he'd processed the words, they were out of sight--but not always, so sometimes, by the age of 7, he could turn and shout "Hi Andrew!" at their disappearing back.

The birthday party, however, really drove it home for me. I knew he felt lonely and isolated. But I also saw, with my own eyes, that these kids were trying to be friendly. A normative child probably can't take much of being totally disregarded, and without someone to explain that my son can't actually hear them while he's concentrating on something, they're going to give up. So I was heartbroken for him, because I realized his sense of loneliness wasn't only because kids were ignoring him or shutting him out; they were trying. He simply couldn't process it in time.

4. Extreme over-focus. There is nothing my six year old could not tell you about Age of Empires. Nothing. Sadly, there is also nothing he wouldn't tell you about Age of Empires. Nothing. He could talk about that game for four hours on end. Some common ASD wisdom dictates that parents should break this habit of over-focus. We didn't elect to do that because he was so engaged while he was discussing things he loved, and we reasoned that if he was willing to engage and talk about things he loved, he would gradually be able to wait his turn to speak, and to talk about things that did not engage him as much. And this proved to be true.

In a speech therapy class I attended for other reasons--which was actually an ASD children class, with both children and parents in attendance--most of the children did not speak, although they could. They answered yes or no. One of the parents asked me how I'd gotten my older son to talk, because by the time he was ten years old, he could have a reasonable conversation (and did, with one of the woman who helped teach the class; they taped him because she thought he was such a blast). I told him we let him talk about whatever interested him in the early days. He said that when his son started to talk about his obsession (weather and firetrucks), they would cut him off because it 'wasn't normal'. I hate those words, by the way.

I pointed out that it was only for the sake of sharing things he loved that his son would try to make the effort to speak at all. And only by sharing would he learn that there was pleasure in conversation with other people. The father was really surprised, because it had never occurred to him to make that connection, and because he was trying so hard to do what was right for his son ( by helping him to be normal), he wasn't allowing that initial rush of shared obsession to flower into something larger.

But, I will admit that this kind of endless drone does wear on other children, and it does make it harder.

5. Melt-down. When my son was just under the age of two, he could throw a tantrum that would last for hours. We would put him in his room to time-out, and we would wait it out--but it was difficult. He very seldom did this, however; it was always over a perceived injustice on our part, or after a period of intense stimulation. We couldn't travel with him at all. Even as an infant. He could spend one night away from home, but if he wasn't at home the next day, he would hit his limit and scream his lungs out.

I went to one convention with him at ten months of age, and I had to take him into a room and shut all the lights off and hold him tightly while he screamed in my ear. It took him 45 minutes, and my beloved husband, coming to see if we were all right, opened the door and turned on the lights. Instant screaming. Another 45 minutes of waiting it out. We didn't try that again until he was older.

He could, however, melt-down at school--see the previous post about Peter--and when he did, it took just as long. And this almost inchoate rage is also very difficult for other children, although in his defence, once he hit the screaming part, he was never, ever violent.

6. Touching. The absolute worst part of the sensitivity spectrum he had in a school situation: he always wanted to be in physical contact with something--or someone. So he would, if he were stressed, try sitting in the lap of the girl beside him. Or the boy. He'd reach out absently to stroke their arms. He had no sense at all of appropriate physical boundaries, no matter how often we tried to --gently--explain why this frightened other children. Our explanations made no sense to him.

This was the worst, and the hardest - because I know, absolutely and unequivocally, that I would have hated him had I been a girl in his class. I hated to be touched and if a total stranger was trying to sit in my lap or stroke my elbows, I'm sure that I wouldn't have felt entirely safe with it as a child.


There are many other little things, as well, but I think that's enough to give you an idea of how difficult it would be for normative children--even the nice ones--to accept or understand him. And yet, in the end, they did.

Comments

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trektone
Oct. 14th, 2010 11:39 pm (UTC)
Wow.

You're writing a book about this, aren't you?
msagara
Oct. 14th, 2010 11:43 pm (UTC)
You're writing a book about this, aren't you?

*cries*

I'm really, really not. I will pretend that you're being serious instead of teasing me and say that I don't have the educational and medical credentials that would allow a book like this to be published (imho).

But. Ummm. People found the previous post helpful, and I hadn't quite realized how many of us are parenting ASD children, and so every single thought and useful tactic of the past seventeen years came rushing to the surface and. Ummm. I have split this. Three times.

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(Anonymous)
Oct. 14th, 2010 11:40 pm (UTC)
thanks and keep it up
I am borderline Aspergers mysef, and had a terrible time in school with verbal bullying. At the same time, I was the only refuge (in seventh grade) one particularly afflicted boy had in a classroom where the teacher did nothing about the bullying that was blatantly obvious and occurring during classroom instruction time (and not just free socializing time.

Anyway, I've been dreading sending my own kids to school since I have no idea how to head off the bullying if it happens that they're not particularly good at socializing. I am very interested to know about what the principal did on a schoolwide basis as well as what worked for your son individually.

Thanks for taking the time to process all these ideas and write them. I know from experience that it's a difficult and time consuming process.

Thanks!
teenagewitch
Oct. 14th, 2010 11:46 pm (UTC)
My son is like this, everything you have written makes me think of my son in some way. But Matt is social, just not in a way that anyone understand. When hes nervous or anxious he talks about trains, when hes happy he talks about trains. Trains are his passion, his drive. I can get him to do almost anything for a train. His extreme focus is trains. He can tell you anything about trains including how to build an exact replica of a polar express layout he saw once. He is totally attention to detail OCD and needs to have everything the same every single time. He has to have his schedule followed to an exactness that drives me up the wall since I am not that strict. He puts himself to bed at nine pm and gets angry if dinner isn't at six pm sharp. He also has no idea of personal boundaries, he assumes that if you are crying or upset then obviously you need a hug whether or not you think you need. Whats rational for him doesn't usually make sense to me. The worst part is that I am the one who gets frustrated with him. I think its fine to stay up and put him to bed after a movie on Saturdays, he will get up in the middle and go to bed at 9 pm. He always wants to be in my lap and sometimes I just feel like screaming at him to stop touching me. I think that by your words you are a way better parent then I am.
msagara
Oct. 14th, 2010 11:56 pm (UTC)
He always wants to be in my lap and sometimes I just feel like screaming at him to stop touching me. I think that by your words you are a way better parent then I am.

Please, please don't use anything I've written about my own son's childhood to beat yourself up. Please. Bits and pieces of society and extended family will no doubt be standing in the wings to do that for you.

I may have mentioned in point 6. that I didn't enjoy being touched by strangers. In real life I am not a very huggy-touchy person and I could not put my son down until he could crawl. It terrified him; he could scream for hours from the time he was a week old.

We had a lot of parental help (my parents, my son's godfather), and they all took turns holding, carrying, sleeping with baby on their chest. They gave me a break. But at the end of a day? I would hand my infant to my husband the minute he walked in the door and hide in my quiet room for half an hour. Or longer.

I'm trying to post things that I think might be helpful for some people in similar situations -- but all children are different; our children are not the sum of their various diagnoses.

You are the only other person, btw, who's ever said their child has the same touch-craving that mine had; a lot of ASD children are polar opposite and distinctly dislike being touched too much.

My son had serial obsessions, though--Age of Empires was big when he was finishing senior kindergarten. Souls in the System was big before then. And, ummm, doom. He did love the Putt-Putt kids games, though. (My husband hated hated hated the Doom thing, but we had a demo CD of old mac games and we went through it sequentially, and.)
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_ocelott_
Oct. 14th, 2010 11:53 pm (UTC)
I just wanted to pop in and say I'm really enjoying this series and I'm looking forward to the rest of it. None of my children are ASD but my younger brother has both Asperger's and ADHD, so a lot of this is familiar in some regard.
suibhne
Oct. 15th, 2010 12:08 am (UTC)
I don't have children who are ASD and still this is incredibly powerful. So much of what you describe applies to all children. Please don't take this as an attempt to downplay the struggles of parenting an ASD child - I am close to several and do realize the difficulties. I'm simply marveling over how much these approaches would make parenting any unique child easier, and they are all unique.

Thank you for sharing this. These entries have been inspiring.
penmage
Oct. 15th, 2010 12:19 am (UTC)
I find these posts fascinating and eye-opening, so thank you. I hope that what I read here will help me relate to any ASD children or adults I encounter.
marktimmony
Oct. 15th, 2010 12:55 am (UTC)
Michelle, wow.

Again, thank you for sharing.

I have a question - and in no way am I attempting to make light or belittle any of this, but... did you find inspiration for the Tha'alani in your experiences (and understandings) with Daniel?
msagara
Oct. 15th, 2010 01:00 am (UTC)
I have a question - and in no way am I attempting to make light or belittle any of this, but... did you find inspiration for the Tha'alani in your experiences (and understandings) with Daniel?

Not directly, no. Which is to say, they'd be the opposite condition: what if everyone really did, from the moment of your birth, know everything you were thinking and everything that was happening to you?

But I don't think you can ever entirely separate life experiences from writing on a subconscious level; everything goes in.
kate_nepveu
Oct. 15th, 2010 01:42 am (UTC)
Thank you for writing these posts; from my huge vast experience of just over two years /sarcasm, it seems to me that there are a lot of generally-applicable principles for parenting here, cast into sharp relief because of the way you learned to apply them.
controuble
Oct. 15th, 2010 02:05 am (UTC)
Thank you for these posts. I have an ASD son who went through a lot of what you are talking about. Unfortunately for him, because his father died when he was 3, I had no clue of how to deal with a lot of his behaviors and nobody to help me figure out what was going on. Reading these has given me more understanding of what is probably going on in his head than his therapists have been able to do in 9 years. He is totally unwilling to talk about his feelings with me and will rarely do so with anyone else, either.

Would you mind if I linked to these posts over on the aspecialparent.
msagara
Oct. 15th, 2010 02:12 am (UTC)
He is totally unwilling to talk about his feelings with me and will rarely do so with anyone else, either.

So was my son. In the early years, I don't think he understood the necessity for it. The only way I could get him to talk about his school day was to talk about my kindergarten experiences first. Sometimes that similarity of experience would draw him out and he'd then say "that happened to me, too," in his serious voice. When I suspected what was happening, I would -- I'm sorry to say -- fabricate my early experiences. Sometimes this worked, and sometimes it didn't -- but when it did, it was very helpful.

And being a single parent in this situation would be so very, very hard. I think I was about 85% able to understand and build a mental picture of the way my son's thought processes worked; my husband could fill in 10% (his was probably 75%, but there was overlap), and his godfather the other 5%.

There were a lot of adults in his early life, which of course made a huge difference.

And yes -- please feel free to link if you think it will be helpful to anyone there.
solan_t
Oct. 15th, 2010 02:16 am (UTC)
You might find this interesting. I stumbled on a manga called 'With the Light' by Keiko Tobe. It's up to at least volume 6 in English. I picked it up thinking 'What a peculiar cover for a manga'. It's about a family with a profoundly autistic child and their strugles and joys, how they cope, how the schools deal and everything inbetween. I have found it just facinating.


Argh. I just spent 15 minute waffling over whether or not I would post this.
msagara
Oct. 15th, 2010 02:24 am (UTC)
Argh. I just spent 15 minute waffling over whether or not I would post this.

Don't worry :). I actually have two of them -- I think I even linked them here a couple of years ago, because it was such an interesting idea for a manga; they were very hopeful, Especially given the much stronger pressure to be normal in Hikaru's society.
verdandiweaves
Oct. 15th, 2010 02:29 am (UTC)
My son didn't get his diagnosis until he was 8. Today I had the first official review meeting since that. The school's attitude couldn't have been more different. Suddenly he wasn't a bad boy and we weren't rubbish parents. But it had taken years of fighting and one wonderful consultant who really took the teaching professionals to task.
These posts are fascinating and also very supportive. We're now attempting to get the school to understand all AS children aren't the same, but we're making progress at last . Btw my son also always wants to be held.
rocalisa
Oct. 15th, 2010 03:13 am (UTC)
Thank you for posting this. It is truly fascinating, even for a parent of a non-ASD child.

We have a 6 year old ex-premature baby with strong ADHD tendencies instead, and at least some of what you describe is quite familiar (while of course, much is not).

My son has no idea of personal space. Wherever I am, his preference is to sit on me. Even if I gently move him to the side, in moments he's back and I don't think he realises at all that he does it. When a professional brought it up, it was kind of relief to find out that he isn't the only one who does this.

Anyway, mostly I want to say that you and all other parents of ASD children have my profound respect. And to the lady who did/does all this as a single parent, I bow to you.

Thank you for aiding my understanding.
msagara
Oct. 15th, 2010 03:42 am (UTC)
My son has no idea of personal space. Wherever I am, his preference is to sit on me. Even if I gently move him to the side, in moments he's back and I don't think he realises at all that he does it. When a professional brought it up, it was kind of relief to find out that he isn't the only one who does this.

I think the sensory input is calming for some ADHD children. One man who worked with ADHD children found that one of the kids he dealt with would be a perfectly calm and reasonable child at his school desk if he had a walkman on and was blasting music into his ears. I'm not sure why this worked, but I think it was also because of the sensory input.

But I'm really happy to have people point this out--it was difficult in a school setting, for us, but it did eventually subside.
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ex_triciasu
Oct. 15th, 2010 03:15 am (UTC)
Thank you so much for this post. As others have said upthread, it is illuminating to me as an ordinary parent--and as a human being, for that matter.
uberta
Oct. 15th, 2010 03:32 am (UTC)
I'm a woman who was diagnosed ASD as an adult. I have four kids of my own now, two being young toddlers with delays who are considered to be somewhere on the spectrum. I remember that, when I was a child, I would stroke the hair of other little girls.

There was one time that I traced the features and hair of a little African-American girl, and she did the same to me.

I think my gender gets a lot more slack than the male gender. Little girls are more inclined to be nice to an odd little girl than to an odd little boy, and it seems that ASD girls recognize the differences between males and females right away.

Anyway, I hope you don't mind my two cents. With a ratio of 1 in 70 boys and 1 in 315 girls, or whatever the numbers are now, I -- just hope you don't mind my two cents. I'm enjoying reading this series. :)
msagara
Oct. 15th, 2010 03:39 am (UTC)
Anyway, I hope you don't mind my two cents. With a ratio of 1 in 70 boys
and 1 in 315 girls, or whatever the numbers are now, I -- just hope you
don't mind my two cents. I'm enjoying reading this series. :)


I absolutely don't mind. I've only met two girls in my life that I strongly thought were on the spectrum, and I therefore usually default to the male pronoun because, well, son :).
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(Deleted comment)
drenilop
Oct. 15th, 2010 02:57 pm (UTC)
I need to second this. This is the beginnings of a book. But what I'd like to suggest is that you team up with another parent/child combination with Asperger's. Someone else who puzzled out his/her child's behavior AND FOUND A DIFFERENT ANSWER than you did. Help parents of these children figure out HOW to figure out what their child is thinking. The book would not only tell the separate stories, and include the children's insights, but I would also love to see you discuss the kinds of things you observed that led you to the conclusion you made about how his mind worked. What other explanations did you consider? One of the things I've learned, being in the social sciences, is that most people do *not* come equipped with the set of mental tools you need to figure these things out. Your family was uniquely blessed in that you both had at least some component of that systematic, orderly, let's-pick-it-apart-and-put-it-back-together-again way of thinking. It's part of what the Myers-Brigg tests call the "scientist" profile (INTJ, I think) - introspective, inquisitive, systematic - and it occurs in less than 1% of the population (and is heavily skewed toward men). A LOT of parents could benefit from this layman's guide to how to make sense of your (special needs or not) children. Most of us simply are not equipped with the tools we need to DO this kind of systematic analysis and make sense of the stuff we observe. Show us how you inductively figured this out.

In short, I think you're selling yourself short. The lack of credentials may actually work in your favor if you spin it right.
(no subject) - uberta - Oct. 15th, 2010 03:27 pm (UTC) - Expand
(no subject) - drenilop - Oct. 15th, 2010 03:29 pm (UTC) - Expand
(no subject) - uberta - Oct. 15th, 2010 04:06 pm (UTC) - Expand
(no subject) - controuble - Oct. 15th, 2010 05:12 pm (UTC) - Expand
(no subject) - tetsujinnooni - Oct. 15th, 2010 03:29 pm (UTC) - Expand
spiffikins
Oct. 15th, 2010 05:06 am (UTC)
My youngest brother was diagnosed with ADHD/PDD - so much of this is so familiar. From a very early age, it just Did Not Work to say "don't do that" - you always had to come up with a reason why not - and explain *everything* - and if you couldn't explain it in a way that made sense to him, he wasn't going to listen to you.

He also had a very strong sense of fairness - if he got into an altercation at school with another kid - he didn't mind getting in trouble as long as the other kid *also* got in trouble.

dedra
Oct. 15th, 2010 05:47 am (UTC)
I really think that some of the other posters have the right idea. You should write a book about this. Just reading it has given me so much more perspective on a variety of levels and if there is one parent out there that it helps, wouldn't it be worth it?

Consider it. You might be surprised how much creedance you have, having lived it. You don't have to be a psychologist or medical professional to write about something that is so very influential on your live (as well as many others' lives) and it could help a child.

kchew
Oct. 15th, 2010 06:25 am (UTC)
Call it a memoir and you don't need to worry about credentials. The point of a memoir is to communicate personal experience, and not to assert cred, although cred can be claimed through experience.
zingerella
Oct. 15th, 2010 01:22 pm (UTC)
My thinking exactly. If you write "this is how we live" rather than "this is what you should do," you're in an entirely different section of the bookstore and you need to be an expert only on what you did.

Which you are. You are, in fact, the world's foremost expert on that.
(no subject) - uberta - Oct. 15th, 2010 03:24 pm (UTC) - Expand
artbeco
Oct. 15th, 2010 06:30 am (UTC)
What strikes me is how much your coping mechanisms work for 'normal' kids as well; perhaps especially active curious boys (like mine). I don't think my guys fall on the spectrum, though some well-meaning adults have tried to tell me they needed medication 'to calm them down'. But your listening to your son, interpreting how he views the world and your dealings with teachers and other adults and kids is really very valuable for anybody with kids.

I love that you went ahead and encouraged him to talk about whatever he was interested in. I can't imagine trying to squelch that in a child that needs encouragement to express what they're thinking, and after all, don't they all really need all the encouragement they can get to talk about what they're thinking?

I like the idea of a book as well- whether you consider that you have the 'right' credentials or not, you have more than enough of the other parts to make an exceptional, immensely helpful book about how your family coped and allowed your son to thrive. And honestly, that in-the-trenches experience combined with your writing abilities would make a much better, more accessible read for any parent than an academic approach would.

And thanks again for letting us read all of your thoughts here. Odd how intensely personal it all is, and yet so universal, isn't it?
jonquil
Oct. 18th, 2010 05:13 pm (UTC)
My son is not ASD, but I found it very important to listen to hours and hours and hours of first manga and anime and later videogames because I wanted him to be *heard*. This was adaptive behavior; he didn't talk much unless he was talking about something really important to him, and if it was videogames, so be it.
mizkit
Oct. 15th, 2010 08:18 am (UTC)
These really are completely fascinating posts. Thanks for telling this story.
brownnicky
Oct. 15th, 2010 08:21 am (UTC)
This is fascinating. I don't know why you couldn't get a book about this published. There are many children with variants of these difficulties and your insights might help.
A friend of mine with two quite severely ASD kids published this. http://www.amazon.co.uk/George-Sam-Autism-Charlotte-Moore/dp/067091441X
She is a writer and journalist but not a medical specialist - she just wrote a very perceptive book about her own children which I know has been enormously helpful to other parents. Maybe you could do the same.
la_marquise_de_
Oct. 15th, 2010 11:28 am (UTC)
You're amazing. You and your husband and both sons.
salsdecember
Oct. 15th, 2010 03:28 pm (UTC)
My younger cousin Mikey also is diagnosed with ASD and he also has a sensory problem, but with lights. He is attracted to bright shiny things and will scream if the lights suddenly change. When he would come over to visit, he would A-line it to my room and stay in there for hours playing with my things until it was time to leave. While this was a rather annoying and a breach of personal space when I was a younger girl, we all quickly realized that this was probably for the best if just to keep Mikey calm.

After a while I picked up that the reason he liked my room so much was that it had the biggest windows, vaulted ceilings and got the best natural light during the day. Plus I had a lot of costume jewelry hanging about, a TV, and bright green pillows which he wouldn't let go of. He liked the bright colors.

So eventually we started turning all the lights on when he came over, even during the day. And at night we would light up the fire pit outside. It worked! He eventually started hanging out in the living room with other people.
estara
Oct. 15th, 2010 06:51 pm (UTC)
First, thanks again for continuing this. I don't have children of my own but I teach at a boys-only school and insight into your situation so well explained helps me to think about behaviour I have seen or things I could do in my own school situation.

Secondly, while I personally like the book idea people are encouraging you to write, I get worried that this will make you feel too much pressure what with the previous writing commitments you have and how you really don't like not being on time with a deadline.

So, I had a thought about a compromise - if you collected your posts into a an .epub with the free Sigil epub editor you could offer that for download for free - or you could upload the a .doc file to something like Lulu.com and people who wanted to have the posts in print could have them printed-on-demand.

But, you know, in the end I'm thankful for the posts you posted and if you can't post any more in this vein for whatever reason, I still got to read this (and I can collect these posts into my own .epub file if I want to, and read it on my ereader to remind me).

My two cents ^^.
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