Believers in neurodiversity, please help de-program me (long, I'm sorry) - Page 3

[Roar]

Ditto to the suggestion to really take time to explore RDI.

What I would caution against is deciding that therapy means "normalizing" or therapy means people pinning a kid down. Those aren't intrinsic parts of getting kids help. Obviously, if you are still working with that OT you shouldn't be. I'm sure many, many of us have had very positive experiences with OTs. The worst thing we encountered with OT was over enthusiasm of the "good boy" variety. One time we moved on to a new therapist. One time we got a therapist to read some articles about praise and she modified her technique. Never was the therapy about changing the child or hurting him. And, it gave him a comfort in his skin that he really lacked before.

[ShaggyDaddy]

Originally Posted by Roar

it gave him a comfort in his skin that he really lacked before.

exactly, that is the only thing that is actually therapy, anything designed to make the individual more comfortable is therapy, anything designed to make everyone else more comfortable is conditioning... it is the conditioning I have such issue with.

[wonderwahine]

Originally Posted by babysbum2

I had a few bad experiences like that. I put it down to part of my education in the world of children with disabilities ...... and adults, with NT kids, or no kids at all, and their trips with kids with difficulties. I had an OT pin my son to the ground to demonstrate a behaviour mod technique.

: I would NEVER EVER allow our OT to pin ds for ANY reason if he didnt like it (he happens to like being squshed under a therapy ball). I consider that child abuse, and I don't believe in using techniques like that for "behaviour mod" reasons. I don't even like the term behaviour modification!

Thankfully we have a very respectful gentle OT.

[acannon]

Originally Posted by babysbum2

It happens in NT's world as well. We all suffer the same rejections, abuses, humiliation and shunning. As a NT, it also takes a lot of patience and endurance to weather the social world and find friends whom you can be close to, and a spouse whom you can live with. It's a VERY messy world..

But it seems to me that with autistic people, it's a lot more damaging and a lot more likely to happen. Most NTs (also the reason why they are known as NTs) can connect to more people and have more friends because they know a significant amount of the social code. If they don't connect to one person or a group of people, they have a better chance of being able to find someone who they do connect with. They can read faces and body language, at least to some degree. They don't automatically take what someone says at face value. For autistic people (well, for me, I can't really speak for all autistic people), communication is 99% language. When someone speaks to me, I don't think about what they might be saying with their body language or how they're looking at me, unless it's so glaringly obvious that I can't ignore it, like if someone's face is turning beet red, they're yelling curse words at me and hitting me. That's when I start thinking about body language. That stuff is confusing to me and I don't know how to read it properly, so I just block it out. I hear what they're saying, and sometimes how they're saying it, and, most of the time, I take it totally at face value. Many times, people have said something mean to me and I yell at them and they say they're just kidding. The first dozen times this has happened, I thought, "They're just trying to mess with me. They weren't kidding and they don't want to face up to the fact that they were making fun of me," but lots of people have done it. Friends who I knew were friends, relatives, even my DP has done this, and he even has AS too. I try to explain to him that I don't know when someone's kidding or not and I'm not sure if he believes me.

Another thing that works to prevent and tear away at friendships is when people participate in activities that are related to things that I'm afraid of (like going on amusement park rides when I'm afraid of heights). An example that happened recently was when I went to the zoo with other mothers and we got to the petting zoo area. All of the mothers and their children went in the pen to pet the sheep but I didn't because animals scare me. I don't know how to deal with them, especially when there's a bunch of them coming up to me. It's one less connection I could have with potential friends. Even when I try to make friends, it seems like I can only make friends with people who are at least a little out there. I'm not talking about just people with mental illnesses, I'm also talking about people who are geeky, who they themselves have special needs children, and people who can ignore my lack of social skills. I haven't encountered a lot of people who fit into these categories IRL. I don't know. It's all really frustrating to me sometimes and I just wonder, what's the point? The only reason I started getting into it is because my LO is really social, even at 4 months, and I want him to have friends as he gets older.

[feebeeglee]

Ack, I've been typing forever and I never could get this to say what I wanted.

I'm sorry I implied that Dr. Gutstein was lying. I know you RDI mamas like him and were insulted on his behalf. I meant it in a lies, damn lies and statistics kind of way.

For the record I think Theory of Mind is bunk.

I can't come up with a good way to put what I don't like about RDI (and Floortime too) core philosophy without sounding like I'm looking for a fight, so I won't try today. I think they're both sure fun to do with your kid though.

[jaye]

Originally Posted by babysbum2

because, autistics WANT relationships and friendships, but they dont' have the Theory of Mind to get what they want. My son is a classic example: he finds it highly distressing that he has no friends.

I think this is generalizing too much - and the spectrum is just too varied to do that. I have 2 boys and they are on either ends of the spectrum. I can honestly say at this point in their lives (4.5 and 8.5 yrs) they do not care at all about friendships and they actually both demonstrate a fairly decent "theory of mind".

I also doubt that HFA (whatever that is) marriage percentage. I'm not saying he's lying - I just can't figure out how he would come to that statistic. I would believe that more "HFA" women are married than HFA men.

[acannon]

HFA stand for High Functioning Autism. I'm not sure if you meant that you didn't know the acronym or that you were opposed to categorizing people on the basis of functioning level. I'm just trying to cover all bases.

[jaye]

Originally Posted by ShaggyDaddy

Second off I lined up my cars for hours and hours each day. I lined up texts, I lined up phrases, I lined up rocks, etc etc. Now I line up data. I line it up in such a way that people who are not capable of autistic thinking can use the data in a useful way. I help them cope for their extreme deficit in data analysis and data indexing skills. This is a typical deficit in NT people. Because of their neurotypical "static reasoning" they are unable to find statistical data patterns. My Autistic "static thinking" is very sought after, and very lucrative. I lined up cars, now I line up words, data, and people... and it pays the mortgage, mostly because other people are not capable of thinking on the same level as me, how much do you think it matters to me that I can't think on the same level as them?

This is awesome. I am envious of your static thinking!

[jaye]

Originally Posted by acannon

HFA stand for High Functioning Autism. I'm not sure if you meant that you didn't know the acronym or that you were opposed to categorizing people on the basis of functioning level. I'm just trying to cover all bases.

Oh yeah - sorry - I know what it stands for but I hear people use it to describe all sorts of people and others who only use it to describe Aspergers and it isn't even a diagnostic term, right? So - yeah - all that makes it a very confusing term for me

[acannon]

Some people think HFA and AS are the same and some people think they are different. I'm not sure if it's used as a diagnostic term or not. But that can get confusing. It seems like even "experts" are confused.

[ShaggyDaddy]

Originally Posted by acannon

Some people think HFA and AS are the same and some people think they are different. I'm not sure if it's used as a diagnostic term or not. But that can get confusing. It seems like even "experts" are confused.

there is actually "no such diagnosis" so it is a subjective term.

http://www.cdc.gov/ncbddd/autism/ove...c_criteria.htm

Because of that, it is a term often manipulated to make whatever statistic/point an individual wants to make. HFA is essentially a useless label for comparisons and statistics, because it means different things to different people.

[Roar]

Originally Posted by ShaggyDaddy

exactly, that is the only thing that is actually therapy, anything designed to make the individual more comfortable is therapy, anything designed to make everyone else more comfortable is conditioning... it is the conditioning I have such issue with.

When parents of NT kids teach their kids manners do you consider that conditioning? Really the purpose of manners it make other people feel more comfortable right?

[ShaggyDaddy]

Originally Posted by Roar

When parents of NT kids teach their kids manners do you consider that conditioning? Really the purpose of manners it make other people feel more comfortable right?

I have a whole rant about manners... but yeah basically I feel like teaching children random phrases and assigning unnecessary power to "magic" words and specific silverware usage is a waste of everybody's time and effort.

Especially in modern society, I have found that manners are largely used as a substitute for treating people with dignity and respect... mostly because children are not treated as such, so they must be taught rigid protocols to emulate something they have never experienced. I feel that the correct way to teach people how to treat other people with respect is to respect them, not to teach them which hand you are supposed to use to eat soup, when they should stand/sit at a dinner party, or which magical word produces compliance in adults.

[Roar]

I think we may define manners differently Shaggy.

I think the world is a better place when people sometimes say thank you, bring cookies to a sick neighbor, hold open a door for a person with a stroller, say thanks when someone does something kind for them, don't pick your orifices in public, appreciate acts of kindness, attend to personal hygiene by showering or bathing, etc. The reason for doing these things isn't just because it gets you something in return - but because it is part of being kind and helping yourself and other people feel more comfortable.

I think we agree that the "say the magic word" kind of ordering around of kids in the cause of teaching manners isn't cool. My belief though is that there are appropriate, respectful and kind ways to help kids, whether they are NT or not, learn the customs of our culture and to become kind people and manners are a part of that.

[babysbum2]

Because of that, it is a term often manipulated to make whatever statistic/point an individual wants to make. HFA is essentially a useless label for comparisons and statistics, because it means different things to different people.

I was told by our assessors that "High Functioning Autism" was used for children who did not have an intellectual disability. Where I live you need at least 6 of the 12 criterea for autism, and at least 4 for aspergers. My son got 7/12 and has no LDs or ID, so he is classified as HFA.

[babysbum2]

I would NEVER EVER allow our OT to pin ds for ANY reason if he didnt like it

I would never allow it either, but this OT just "did" it suddenly. You don't expect it, so you get caught off guard. We quit that "therapy" immediately, even though I was actually told off by the pediatrician who sent us there. As it was the OT called me about 6 months later and apologized. She said she felt really bad for what she did and that what she did was wrong.

[mama41]

I'm fairly certain that one day Baron-Cohen's going to be eating enormous crow for that Theory of Mind thing.

That said -- OP, I see nothing wrong with what you're doing, but two things do come to mind:

1. Stay open to the possibility that these people may have some good ideas which, though they may sound offensive to you, may actually suit your son;

2. You don't want to end up their special project, because if there's one thing that psych people aren't, on the whole, it's self-confident, and they really will take it personally if you reject them. They may also decide it's their duty to save your son. So just be careful about how you refuse, and hedge it about with qualifiers and "for now" and the odd quote here and there from whatever establishment anti-"window" figure exists. (It's important not to cite crackpots.) And talk lots about what marvelous work they do and how much you respect it. Talk about "mother's intuition".

3. After you die there's nothing you can do.
I mean it. You can try to insulate them with money, and that's all. And when I say "try to", it's because you're relying on the trustees to act in the children's best interests. Beyond that, yes, terrible things might befall your children. Your son has a sister, and that's good. You may have a saintlike family member who would step in to do what you do now. However, beyond that, all you can do is hope that things will go well. Focus on now.

Even if this window business is true, consider how far your son would have to come before he was genuinely able to fend for himself, and how much continuous reinforcement he might need throughout adulthood. My guess is that short of some miracle, he will have real problems without someone there to help him, regardless of the educational/therapeutic programme you choose.

Do not be scared by ed people reciting the last five minute's dubious psychiatric wisdom. Give their ideas a chance if they sound at all likely, but you're the mother; do what you feel is right for your son. That's the best you can do.

[ShaggyDaddy]

Originally Posted by babysbum2

I was told by our assessors that "High Functioning Autism" was used for children who did not have an intellectual disability. Where I live you need at least 6 of the 12 criterea for autism, and at least 4 for aspergers. My son got 7/12 and has no LDs or ID, so he is classified as HFA.

that is my point...
HFA is:
Aspergers + speech delay
or
Autism with no cognative delay
or
Autism with less criteria matches
or
Autism with exremly faded polkadots

Depending on who you ask; because there is no such thing as a DIAGNOSIS of HIGH FUNCTIONING AUTISM, no "official" criteria, therefore no uniformity of individual characteristics of "high functioning" autistics.

[blsilva]

Originally Posted by acannon

Some people think HFA and AS are the same and some people think they are different. I'm not sure if it's used as a diagnostic term or not. But that can get confusing. It seems like even "experts" are confused.

Honestly, I don't know much about it. The behavioral therapist who evaluated our ds told us he has AS or maybe HFA. Like they were interchangable. Not a real dx, but I'm not real interested in specific labels. He has differences, I'm okay with that. I can work with it. I can appreciate it. And I can help him learn to work with it.

[kchoffmann]

Oh man! I missed this thread while I was gone! I want to add in a few thoughts about the manners thing. The way I see it, is that we have to allow for diversity in what comes naturally to people. Some will feel great satisfaction from being kind and generous, and these are the people for whom those kinds of teachings make more sense. It bugs me that so much of our media's approach to children is that they should *all* be polite and help others and say please and thank you or whatever in order to be worthwhile in our culture. Isn't it possible that some people have other areas to contribute to? And that those areas are also important in entirely different ways? My son is not self-obsessed, but he is defintely less concerned with being kind than, say, learning something new on the computer and sharing it with others. He's a naturally curious, thoughtful, and gentle person, but I doubt helping others is going to be where he shows his strength. My other son, on the other hand, is very concerned with what others are thinking/feeling, and it is obvious to me that he'll get satisfaction from helping others and even pleasing them by being polite. Meanwhile, though, he has a harder time waiting for his turn, while Ezra (autistic) gets pleasure from watching someone else take a turn.

All to say, when it comes to manners, I think it's too easy to assume all people must be kind and helpful, etc. when in fact not everyone will do well with that or ever feel fulfilled by it, no matter how much you try to teach it. I think that that's a good thing myself.