Autism Speaks Site

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The science of the site topic

It would seem that there are, in the main, two kinds of parents or caregivers: those who can accept their children's differences, and those who cannot. Now I see where this is travelling.

Further, some parents have to grieve for the child not expected, and some just take the child. Some, unfortunately, want to do away with what is not expected and not wanted.

The curebies want to cure what they cannot deal with and/or was not expected. Those who can accept their children (the ideal) are not seeking a cure. Good.

We are against a cure because we accept ourselves for whom we are. In sickness and in health. This is the basis of accepting oneself, proverbial warts and all.

I hope I have not bored anyone with this analysis. I just wanted to sift through the flotsam and jetsam of this Autism Speaks site.

It still does not seem like Autism Speaking to me. It seems more like NTs swinging at the end of their ropes, damaging their children in the process. Why do they not try humour as an approach? This may help them to try to heal themselves so they can be better able to help their children, not change them, not cure them. Let them be.

When I first started looking at autism a few years ago I thought about "the low functiong ones who sit in a corner and rock and probably wouldn't notice if they were in an institution or not..." sort of thing. But as it turns out you can take a person like me or you and turn them into a person who sits in a corner and rocks with enough abuse. You can see it in descriptions of concentration camp or kidapped/torture-victim scenarios. If you abuse someone enough they turn into one of THOSE people. It might be easier to get those kinds of behaviors (sitting in a corner and rocking, self-injury, talking to one's self) out of some people than others. It's not so hard to take a baby and turn them into one of THOSE people if you totally neglect them (actually lots of babies just up and die if you neglect loving them, even if you feed them and keep them warm and clean).

So the ones we think of as being THOSE people, are sometimes made that way by neglect/abuse or just misunderstanding them. Think about Tito Mukhopadhyay. He's not the only person who like ambuend seems to be packaged similar to THOSE people, but who is obviously not one of THOSE people because he communicates and is given respect and people listen to what he says, etc, etc. If his mother had put him in an institution, it would be a lot harder for him to do what he does today. Maybe he could catch up at age 30 say, if he (or someone like him) had been locked away at age 3, but maybe by that age he'd suffer lots of diseases and abuse (rape/drug side effects/being slapped/kicked/ tied down/shocked...) and it would tend to color such a person's attitude toward communicating with others... like would it be safe to tell people what you really thought, even if they let you out and you were living on your own with support? Would you ever feel safe around anyone again?

I think if I had been institutionalized as a child, I'm not sure I would trust anyone anywhere.

But back to institutionalization... lots of people die in such situations, even if they are in "group homes" which are small institutions usually, from what I understand and from the little I've seen of them.

I have a quite disabled ASD kid about the age of ambuend who in some ways seems more normal than ambuend but maybe is more disabled in other ways. Like ambuend as far as I can tell..., my kid will never drive (couldn't and doesn't want to, either). My kid will never work and make money enough to support him/herself. My kid lives with me. If you ask my kid, s/he might joke that s/he is burdened with me, but s/he is not my burden at all. It is a joy to live with this person, even though there's a lot of care/chores that I need to do that I wouldn't have to do if s/he didn't live with me.

I have a typical kid, too. There have been times when caring for the typical kid trying to keep that kid happy/productice etc has been very difficult. But I would never say that kid was a burden, either. My kids love me for some reason, and I love them. We don't describe each other as dead weight or useless.

Another thing about "institutions," there's a young man who lives across the parking lot from me (in my apartment complex) who has something like ... maybe apert syndrome. He walks odd and has sort of cerebral palsied looking arm movements. His head and face are different. Sometimes I can hear him yelling sort of random sounding noises, from my place. He might be happy, I don't know... but he's loud. I have talked to him before a little, he doesn't really talk. I think he has a communication device, but I don't know if he used it when I saw him with it (I'm not sure if he had a faciliator, but I think he did). At any rate, I'm pretty sure his parent or parents are university professors and they probably can afford easily to take care of him out of their own pockets and they probably have a house with enough room for him to live... but maybe they don't. Regardless, for some (wonderful) reason someone didn't want him in a group home. He lives in a two bedroom apartment and has caregivers. I see him coming and going. They take him places. One of the first times I met him he was on the university campus and was sitting in on some kind of class. He wasn't an enrolled student, so I think maybe his parents had pulled strings to let him and his caregivers sit in on a computer class of some kind.

This guy is definitely one of THOSE people. He can't speak any recognizable words as far as I know. He looks odd to say the least. He moves odd. But he seems to have a pretty good life.

I have told my kid... "if I die.. probably the State will tell you that they want you to live in a group home. Tell them, NO, that you know your rights that you can live in your own place and have caregivers come to you." Fortunately we have enough friends that that would probably work out (they'd make sure the caregivers didn't take advantage of my kid. And possibly my other kid would be able to do something to help out, though it wouldn't be necessary.

There are kids/adults who are very high maintenance but a lot of that high maintenance stuff comes from the person being pushed into situations that are too stressful.

This was interesting it's from a mom who isn't so unusual I think, it was posted about a month ago to a sort of autism/policies/organizations group:



Sounds like "low functioning" Asperger's, if I may be flip about it.

If these people hadn't tried to reduce the young man's stress and instead kept trying to change his drugs, no telling where he would have ended up. Maybe in jail for hitting people? Maybe in a mental institution because he was "too much to handle"??? Maybe sitting in a corner drooling and rocking and talking to himself?

Last edited by autism_diva on 21 Jan 2008, 12:27 am, edited 1 time in total.

My impression is that most of the parents on AS board have PDD,nos kinds of kids and some have Asperger's. There are definitely parents on that board (sock puppet types) who lie about how disabled/difficult their child is to shut up anyone who questions what they are doing or saying.

Like there's a person on there now in a new disguise who came on a few months ago as a very aggressive person (now this person is slightly less aggressive). This woman is IN LOVE with the "Lupron protocol" that's where you give a child a chemical castration drug. From what I can tell she never took her son to an endocrinologist, but got her son on Lupron injections prescribed by Mark Geier (who has prescribed Lupron for this woman's friend's son, basically over the phone without ever seeing the boy). As far as I can tell her son was 8 or 9 when they put him on Lupron. In her descriptions of him using her real identity she describes him as doing better after Lupron, his sentence structure was better, he stopped self-injuring...

In the latest sock puppet form her son is low functioning and self injuring now. She says in 4 years he's gained nothing and she can't stand it any more. She's obviously lying. Given how nasty this woman is in general, it's not unlikely that she would deliberately lie about her son to make "points" on the AS board. And yes, I know it's the same mom with the son who made the gains on Lupron. She's given her real identity away already on the AS board if you know how she writes, etc, it's very distinctive. Not to mention she's shilling for Geier and Lupron both identities.

"wildagain" was also a sock puppet with a fake kid who he had cured with chelation or something. "Wildagain" was supposed to be a man with Asperger's who used biomed to cure his kid. There was no real Asperger's person on the board who had cured his kid with biomed or anything else so this well-known bully invented one.

That's not to say that none of the parents on that board have kids who are very hard to care for, but how many of them have their kids riding a noisy school bus to school every day where they are tormented by noise all day long and face a noisy school bus ride home. How many of them are drugged because otherwise they'd just scream all day long from the stress at school? How many of the kids feel the rejection/disappointment that their parents may feel toward them? Just because the parents might think the kid is a "vegetable" that doesn't mean that he doesn't know what is going on around him very well.

A kid who is acting out is not a monster kid. He or she's a kid who may need a much different situation than what he or she has currently in order to thrive. But as I pointed out, the really flaming biomed parents on the AS board are not above lying about their kids, and they may be self-deluding about their kids, both in how bad off they are now, or have been and how "cured" they are by whatever therapy the parent swears by.

Wow... there's a lot of great answers there and you are starting to sway me, for which I'm grateful.

I've never argued that there's anything that should be done for aspies and hfa kids based on what I can see with mine. In the right environment, they function very well.

I don't know enough about LFA.

It's something that I'm grateful not to have to deal with and I feel terrified at the thought that I could have had to deal with it on an everyday parental basis - I just don't think I'm strong enough but who knows, perhaps you find an inner strength when you have a LFA child.

I watch my cousin struggle with her LFA boy and I try to help but my best efforts are so crap that I feel ashamed. My cousin has learning difficulties and various other issues herself, so in my mind, she's a goddess and I'm constantly amazed by her resolve and dedication.

I've seen the "end product" of institutionalized people and had always assumed that they haven't changed since they were first institutionalized. In their current violent state, I doubt that anyone would have the strength to look after these people, but I hadn't counted on their state being created by their environment - you've given me food for thought.

Thanks.

My daughter is LFA. We're on our own. There's nothing for her. The parents who should be walking shoulder to shoulder solving the problem are busy playing the martyred curbies.

We are pioneers. It's this generation of parents is the first one where many states no longer have institutions. We are the parents who should be blazing new trails. In my state, the LFA generation before my daughter's were institutionalized. Now they're in foster homes and group homes. I don't think it's gotten better. There are trade offs. For example. the institutions had in house medical and dental. Good luck finding health professionals now. We parents need to work out the kinks in our brave new world but we aren't united.

My daughter is invisible.

Most institutions, even if they had in-house medical and dental, didn't/don't (don't is present tense because they still exist) often use them. Many of them in fact pulled out all the teeth of the people in them rather than worry about taking care of them. Dental stuff is known to be (and have been) one of the worst areas of medical neglect among people with developmental disabilities. I have a friend who was in a state institution not all that long ago (she's only maybe 10 years older than me?) and they didn't do anything even when she broke a pretty large bone. Medical neglect was almost uniform among those places.

I think the main problem with the newer places is that they are still institutions, they are just smaller. They still do all the same bad things with all the same bad power structures. And when people are moved out, they're often not moved out correctly: Friends and lovers are frequently split up for instance. The whole thing, while necessary, has been done very poorly, to the point where it's basically "Move people from large institutions to small ones and pretend the little ones aren't institutions even though in almost all ways they're just like them and in some ways they can be worse." Same with private institutions, they're often worse because, like the JRC, there's more staff around to abuse people in a more organized way. (Not that staff are inherently abusive, but that the structure of many institutions lends itself to a replay of the Stanford prison experiment with few to no controls on the behavior of staff: The environment makes the person behave that way, just as there are only about five possible responses to institutions, most of which make a person more 'low functioning' looking.)

There are also places progress has been made, but people are so self-satisfied just about "number of people moved out" that they don't look at the bigger issues of power, control, and abuse. There was a woman who lived in one and then was moved out who said that she didn't find being institutionalized to be much of a change from the foster homes she lived in, because she'd always been in one way or another segregated and controlled and the institution was just a larger version of this. A lot of people don't get that. I experienced almost no difference between being in and being out, because "out" meant being shuttled from place to place that all the "places" were just like the power structures of institutions.

Right now I live in a state that has done away with most of its large institutions, and a lot of good has come out of that, including the fact that I can have any amount of support I might need. But often what happens is people's roommates (that's the pattern here, is you can get one or two staff as your roommate, or else you can have staff come in part of the day, I'm in a pilot program for something in between those two where I have staff in the daytime and a Lifeline-like system at night with also sensors to tell them if something bad has happened) have power and misuse it.

And we are more isolated.

I fully support the move out of institutions, they're outdated and unnecessary and their existence is a human rights violation. But I think we need to work really hard to make sure it's really a move out of institutions and not just a creation of a new institution. There's this horrible thing that NAMI supported which was the "Hospital Without Walls" program. I find the title chilling. Because it leads to the same awful aspects of being in some "inpatient" setting, at the same time as living in what's supposedly the community. Only you're not treated like a real person, you're treated like a case, etc.

"Hospital Without Walls" sums up everything I went through after supposedly leaving mental institutions, and it also sums up everything bad about some of the new programs.

But there are actually ways to do it right, and those need to be encouraged over all the ways to do it wrong. We need to not be this isolated, without having to stuff us all together in one large institution. And a lot of other things.

But I don't think medical care is something we've lost, we've just never had it in the first place. We did lose some things, not so much that.

By the way, just so people are aware, there are (according to sociologists) about four different ways you can respond (as an inmate) to institutions of just about any kind (the guy noting this studied everything from prison to disability institutions to a whole lot of other stuff). I'll quote Goffman on this one:

This is one of the ones I very frequently used in mental institutions and similar places. I just sort of slowed down to a stop, and didn't respond to people much. I don't understand why, but staff used to become enraged by this and it was one of the main reasons they (physically) abused me. I can remember being tied down for not moving and/or not responding (this was different from the freezing my movement disorder caused, but they punished that too) which seems ridiculous. I can also remember them trying to goad me into responding by saying all sorts of awful things and getting right in my face and mocking me if I tried to look away.

And this is one of the things that can, in the long term, lead to an autistic person looking more stereotypically autistic. (And keep in mind the stereotypes we have of autism these days, often come from not just autistic people, but formerly or currently institutionalized autistic people.)

More Goffman:



This is another one I did a lot of, and it's one reason I began to have serious "behavior problems" that I had not previously had. This was really, I was not just frustrated and upset, but I was also trying to retain some semblance of freedom and humanity, and sometimes doing stuff like this was the only chance I got. This is another thing that can cause autistic people to either suddenly develop "behavior problems" or suddenly get a lot worse with them, which is one reason I always wonder why on earth sending us to institutions is supposed to improve our lives.



I never really did this one. I did some things that could have been interpreted as that though, such as messing up in various ways right as everyone thought I was getting better. In my case though, it wasn't because I liked it there (I hated it there), but because the "improvement" people saw took a toll on me and I eventually snapped.



I have a bit of a problem with this one. There is one half of this I did, and another half I didn't. I did very much absorb a psychiatric view of me and attempt to act as much like whatever they seemed to want as I possibly could. I didn't, however, turn into an amateur staff person or absorb these views of other people (at least not very much). I did once know someone who did though. It amazed me the things he'd come up with. He'd describe people doing the "intransigent" thing as having oppositional defiant disorder, for instance, and show no understanding that there was a reason they were doing this. And there were people in some places who acted like mini-staff and seemed totally unaware that even they, who tended to be the most favored by staff, were very far below staff in the social hierarchy.

And I did see a lot of people who went in and out of there extremely fast compared to my usual times, who developed that as a means of getting out whether they believed what they said or not. One thing a lot of people don't realize, either, is that these places can affect people in a matter of days. Officially a person can develop Stockholm syndrome in something like 3 to 7 days. The places sort of, by their nature, take over people's minds in a matter of days. Even the Stanford prison experiment had to be stopped after a few days because of how rapidly the roles took over people's minds, and that had a lot of checks and balances that these systems do not have.

Also, you might be interested in the conversation on institutions I had with someone who'd both lived and worked in them. She describes what I was like when she first met me, which is a very good explanation of how these places affected me. I asked her what she meant by "obvious psych survivor behavior" and she responded:



And then she explained why I had trouble with thinking my own thoughts:



Anyway, I think I'm responding to two different people, and rambling quite a bit, so I'll click submit.

I meant mainly that we must stand against misconception. You may be right that it is best to change the attitude of Autism Speaks members. Still, I believe the roots of the organization are against our beliefs.

I think I am one of those parents here who might be considered a curbie. I have not seen the Autism Speaks site- I mostly stay here. What I really want for my son is not to change him, but to help him deal with the real world out there. He is an only child, and some day he is going to have to make his own way all by himself.

The things that I want for him (and I guess you could say I want to change about him) are:
1. to help him learn to deal with sensory issues so that they do not stand in the way of what he wants to do in his life.
2. to learn how to deal with other people so he is able to function in the workplace and hopefully have his own family some day.
3. to help him learn better motor coordination, because I want him to remain in one piece.

The things that I would not change about him are:
1. his high interest in what he likes, even though I get sick of hearing it over & over & over.
2. his ability to teach himself whatever he wants to know.
3. his cherub face.
4. his stubborness.
5. his tantrums.
6. his blunt honesty.
7. his ability to plan ahead.
8. his interest in things most kids ignore.
9. his grumpy-old-manness.

We have gotten him tons of therapy, changed his diet, etc. etc. He is doing extremely, I mean extremely, well. I really would not be surprised in the least if his dx, pdd-nos, is dropped at some point this year.
The thing about a cure is, our kids will still be as brilliant as they ever were. The only thing that will change is that their sensory, social, and/or motor-planning problems can be lessened. That will take nothing away from the rest of their brains, which are working overtime and in high gear.
I understand when people here say stuff about not wanting to participate in "regular" NT activities anyway, because I can totally understand that. But what if suddenly you woke up one day and you realized why those activities are so much fun? That opportunities to make social connections with other people face-to-face suddenly felt exhilarating? That would not take away from who you are, but it would just add a new dimension, I think.

I don't know why you'd think you are a curebie - you don't sound like one.

You are a curebie if any of the following ring a bell.


1. You think that one day, with enough funding, someone will invent a magic pill or operation that the kid can have which will make them NT.

2. You think that you can simply change a kids diet, parents, proximity to power sources, TV or Game viewing and they'll suddenly become NT.

3. You think you can make a kid NT by electroshocking them, beating them, locking them up or otherwise torturing them into normality.

4. You think that being Aspie or Autistic is wrong..wrong...wrong. A burden thrust onto you which needs to be "fixed".

5. You don't think anyone would be happy the way they are unless they are NT.

6. All you want is for your child to be the same as everyone else's child.

7. You think that any money collected for autistic children should be funneled into research into finding a cure rather than being spent on improving their quality of life.

8. Your child's condition diminishes your love for him/her - you'd love them more if they were NT.

I want to thank you for a well written post. You certainly dont sound like a curebie.

I do have a bit of a possible revelation for you though.

Most of us, to some degree or another, or in some aspects and not others, have a sense of that group camaraderie. Hence the sadness and loneliness that some aspies feel.

We do bond intellectually with others(and things), especially with other spectrumites. That is the basis for our creation of deeper bonds and affections. More typical people start with feelings of.. you tell me. I have no idea what to term it. Its that joy of finding how they are connected to the other person.

In that sense we stand astride two worlds, and so when we say we dont wish to participate in that sort of interactions, we are making a (at least slightly) informed decision. We can see both sides enough to choose.

This is where I turn the tables on you. We see that other side of the world where more typical people would not. There is a whole gamut of experience that you (ostensibly) neurotypicals dont see.

For example, if you were to stumble across a beautiful waterfall, right at sunset, with the most sublime clouds, perhaps you would pine that you had nobody there to experience it with? I will not say that your experience is lessened for the lack of company, but can we agree that it didnt reach fulfillment? I understand that the presence of another has a multiplicative effect. That is as close as I (personally) can understand romance. Thats as close as I understand loneliness.

You see, for me, its the opposite. To experience that alone is sublime. I can enter more fully into the silent world when nobody else is present. When I am alone, even on a blustery winter day, I experience a rush of exhilaration. The world is an amazing place.

So yes, to fill me with the joy and desire of social interaction would rob me of something. And from my informed opinion, the exchange would not be worth it.

I am going to hit submit now. I have a little more to say about the bonding with objects, but I think I hit a good stop point.

I applaud your rational approach towards your child. Points 1 and 3 are agreeable, and point 2 is a needed step for all human beings. Some(but it seems not you) would assume that number two would be subsumption behavior, when in reality, its emulation. Therein lies hardship..

There would be no arguments on Autism Speaks if a band of parents and adult Autistics wouldn't trounce on the rights of others to treat their children. They need to mind their own bizwhacks. Let parents discuss treatment options freely. Many parents don't even bother to post anymore.

It is our 'bizwhacks' as the Autism Speaks Organization pushes for legislation which would infringe on our rights to refuse treatment or condone immunization for our children and ourselves. And frankly, WE are autism and WE will speak!

sorry, but the parents are not the organization. If someone has a beef with the organization, don't get on the board and give the parents grief for helping their kids. I find the autism community in general is a strange place, isn't it? It's not a community at all? It's us vs. THEM mentality. Too much fighting and not enough respect or support for all along that spectrum.

Sorry, but those parents are the funding and the noise for that organization. They are the organization. You might argue that a government is an organization, but without a tax base and a grassroots voice, its wholly ineffective. A union without a labour force cannot thrive.