A post about the effects of institutions on autistics

[conuly]

Right here.

Though I'm sure these results can apply to more than just one group of people, of course.

Comments

[kibbles.livejournal.com]

The last two paragraphs don't make sense. It talks about how not institutionalizing children can help them become independent, but then turns aruond in the last one and says that some groups say that they may be institutionalized unless there is treatment.

Well yeah, what else would happen? If someone is in the condition T is in, doesn't he need to learn how to communicate? To wear clothing in public? To not run into traffic? To try to get an education? What is wrong with getting help so he could function? My other two kids are learning life skills, why wouldn't I want him to have skills to live too?

The last place I want him in is an institution, and even a group home is less than ideal in my mind. I know too many people who work in places like that to feel very comfortable with that, and if his communication stays on the 15 month level (not speech -- communication) then that leads him wide open to abuse and exploitation. Nothing wrong with trying to get a kid to communicate and be safe. It's good enough for my 'normal' kids, and he means just as much to me as the others do. He's not sub-human. He deserves a shot at safety and happiness, just like anyone else. So no institutions, and an education. And if he needs help for that education, then he deserves that too.

(I remember when one place 'mistakenly' sent me the application to put T in an institution instead of getting SCL/respite. It was depressing. I would have even had to pick out his funeral home in advance. Right there in the application.)

[conuly]

You're misreading. The last paragraph

Now, why is it that strong warnings against institutionalization are not issued by doctors and other professionals? Why is it that instead some autism associations give the impression that institutionalization is indicated unless there's treatment?

seems to be a pretty clear condemnation of doctors who recommend institutions, and autism "advocacy" groups who swear that "virtually all" autistics are in institutions (for their own good, of course).

[kibbles.livejournal.com]

See, I read the end is that unless they get treatment, they will wind up in institutions. (Which I thought then that some of the groups use to advocate their favorite forms of treatment.)

I have not come across doctors advocating institutions for CHILDREN, but when I asked if I should set aside money for Ted just in case, they said it may not be necessary, but to look into it. (Not that I don't put aside for my other children too, but in Ted's case, if we don't do it right, it may negate other options for him.)

If you read all the fine print on waivers and grants and stuff, the push, at least on the surface, is give these kids/adults what they need to keep them out. When I was offered another grant the case worker said that the other one was more for if I wanted him in an institution. The one he has is geared towards assistance to keep him OUT of one, which everyone says is the goal.

Could also be a state thing, though, as my information comes trickling in from other places I realize I may be in a decent place for all concerned.

And thinking of the professionals we've seen, yeah, not one has suggested an institution was an option. And we saw a lot. from just about every discipline that might possibly consider seeing a kid like Ted.

[conuly]

But that's not what the end says at all. The end says why do some groups (mostly groups like CAN and Autism Speaks, not state-run organizations, I think) say that? pretty clearly, too. And why don't doctors say, firmly, that it's a bad option instead of just one that "well, it shouldn't come to that"?

[kibbles.livejournal.com]

I am still interpreting it differently. No treatment = institution. Treatment = staying out of one.

And I have yet to see a doctor, therapist, social worker, anyone say to me or any of the parents I know (really no, not internet know) even mention that institutionalization is an option. In fact, many of the dollars are spent with it in writing that the goal is being in the community. You could also say "feeding your kids doritos every meal is a bad option" but why would a doctor say that if it hasn't even come up? "Here is your treatment plan, note there is no institution in it because they are bad! Also, there are no doritos in the treatment plan because, they're bad too."

Maybe other states warehouse their kids but this one doesn't. Also, my two friends in NYC in the same boat as me (kids who have a very real chance of not being independent) never had institutionalization brought up.

I'm really curious now, I should ask my flist if institutionalization was ever brought up first by a medical professional, and if so, under what circumstances. I honestly wonder where and why they do that.

[conuly]

But the way you're reading it, as you said in your first comment, simply doesn't make sense. It reads as though the guy totally changes his opinion in the last paragraph.

And you say that you brought up institutions to your doctors. Why didn't they, when you brought it up, very clearly say it was a bad idea - instead of saying "it may not be necessary"?

And your reading wouldn't make sense without the rest of the entry either. Look.

Not institutionalizing autistic children when they are young doesn't guarantee independence and employment, of course.

(Translation: Keeping kids out of institutions isn't a cure-all either, of course.)

But it appears to be practically a requirement if that sort of outcome is to be attained.

(Translation: However, it seems that just about nobody in institutions does well.)

Note that Kanner reached this conclusion after analyzing 96 cases, not just the 11 mentioned.

(Translation: People realized this decades ago.)

Now, why is it that strong warnings against institutionalization are not issued by doctors and other professionals?

(Translation: Why don't doctors make that clear? or Doctors should make that clear.)

Why is it that instead some autism associations give the impression that institutionalization is indicated unless there's treatment?

(Translation: Why do some organizations (which should not be read as all organizations) say that the only choices are treatment or institutions, when that's not the case at all?)

I really don't understand how you're reading this to say that he advocates a treatment/institution dichotemy.

[kibbles.livejournal.com]

Which is what I said in my initial comment, that it made no sense, that the two paragraphs conflicted.

I am reading it different then you, if you say it reads that way, it makes sense. Perhaps the writing isn't clear enough for everyone. I cannot comprehend it.1

An as far as institutionalizing my son, it wasn't like that, I did not give you the details of the conversation, it had to do with what would happen if we were not alive and there was no one to care for him. Is it prudent to make financial arrangements for him, is there a chance he may never live independently? The answer to that was yes. I suppose he could try to live independently and be homeless worst case, but why would the doctor say NO! BAD FOR YOU TO PUT MONEY ASIDE, YOUR KID WILL BE FINE.

In fact I am a bit annoyed that the future was NOT brought up, as you have to plan in advance for the sorts of trusts needed for a child who may not be able to live independently.

Other than that, I still say I have not seen anyone suggest it, say it is a good idea, and that includes advocacy organizations. I'm not too deep with the organizations, though.

[conuly]

It's not that people say it's a good idea, it's that certain organizations repeat falsehoods about the number of autistics in institutions, and imply that there's an either/or choice.

[kibbles.livejournal.com]

Also I haven't seen anything about intitutions from Autism speaks but I've only glanced at their stuff on the surface. And people I know who do support them haven't mentioned that bit of it. I don't know squat about CAN.

[kibbles.livejournal.com]

I might also add that thankfully it appears that Iowa is loathe to put people in institutions and has many facilities that are of varying supervision. And they put their money where their mouth is, with things like the children at home grants and the supported community living services, both geared towards children (and later on, adults) of different abilities and needs as independent as possible.

[kibbles.livejournal.com]

The last two paragraphs don't make sense. It talks about how not institutionalizing children can help them become independent, but then turns aruond in the last one and says that some groups say that they may be institutionalized unless there is treatment.

Well yeah, what else would happen? If someone is in the condition T is in, doesn't he need to learn how to communicate? To wear clothing in public? To not run into traffic? To try to get an education? What is wrong with getting help so he could function? My other two kids are learning life skills, why wouldn't I want him to have skills to live too?

The last place I want him in is an institution, and even a group home is less than ideal in my mind. I know too many people who work in places like that to feel very comfortable with that, and if his communication stays on the 15 month level (not speech -- communication) then that leads him wide open to abuse and exploitation. Nothing wrong with trying to get a kid to communicate and be safe. It's good enough for my 'normal' kids, and he means just as much to me as the others do. He's not sub-human. He deserves a shot at safety and happiness, just like anyone else. So no institutions, and an education. And if he needs help for that education, then he deserves that too.

(I remember when one place 'mistakenly' sent me the application to put T in an institution instead of getting SCL/respite. It was depressing. I would have even had to pick out his funeral home in advance. Right there in the application.)

[conuly]

You're misreading. The last paragraph

Now, why is it that strong warnings against institutionalization are not issued by doctors and other professionals? Why is it that instead some autism associations give the impression that institutionalization is indicated unless there's treatment?

seems to be a pretty clear condemnation of doctors who recommend institutions, and autism "advocacy" groups who swear that "virtually all" autistics are in institutions (for their own good, of course).

[kibbles.livejournal.com]

See, I read the end is that unless they get treatment, they will wind up in institutions. (Which I thought then that some of the groups use to advocate their favorite forms of treatment.)

I have not come across doctors advocating institutions for CHILDREN, but when I asked if I should set aside money for Ted just in case, they said it may not be necessary, but to look into it. (Not that I don't put aside for my other children too, but in Ted's case, if we don't do it right, it may negate other options for him.)

If you read all the fine print on waivers and grants and stuff, the push, at least on the surface, is give these kids/adults what they need to keep them out. When I was offered another grant the case worker said that the other one was more for if I wanted him in an institution. The one he has is geared towards assistance to keep him OUT of one, which everyone says is the goal.

Could also be a state thing, though, as my information comes trickling in from other places I realize I may be in a decent place for all concerned.

And thinking of the professionals we've seen, yeah, not one has suggested an institution was an option. And we saw a lot. from just about every discipline that might possibly consider seeing a kid like Ted.

[conuly]

But that's not what the end says at all. The end says why do some groups (mostly groups like CAN and Autism Speaks, not state-run organizations, I think) say that? pretty clearly, too. And why don't doctors say, firmly, that it's a bad option instead of just one that "well, it shouldn't come to that"?

[kibbles.livejournal.com]

I am still interpreting it differently. No treatment = institution. Treatment = staying out of one.

And I have yet to see a doctor, therapist, social worker, anyone say to me or any of the parents I know (really no, not internet know) even mention that institutionalization is an option. In fact, many of the dollars are spent with it in writing that the goal is being in the community. You could also say "feeding your kids doritos every meal is a bad option" but why would a doctor say that if it hasn't even come up? "Here is your treatment plan, note there is no institution in it because they are bad! Also, there are no doritos in the treatment plan because, they're bad too."

Maybe other states warehouse their kids but this one doesn't. Also, my two friends in NYC in the same boat as me (kids who have a very real chance of not being independent) never had institutionalization brought up.

I'm really curious now, I should ask my flist if institutionalization was ever brought up first by a medical professional, and if so, under what circumstances. I honestly wonder where and why they do that.

[conuly]

But the way you're reading it, as you said in your first comment, simply doesn't make sense. It reads as though the guy totally changes his opinion in the last paragraph.

And you say that you brought up institutions to your doctors. Why didn't they, when you brought it up, very clearly say it was a bad idea - instead of saying "it may not be necessary"?

And your reading wouldn't make sense without the rest of the entry either. Look.

Not institutionalizing autistic children when they are young doesn't guarantee independence and employment, of course.

(Translation: Keeping kids out of institutions isn't a cure-all either, of course.)

But it appears to be practically a requirement if that sort of outcome is to be attained.

(Translation: However, it seems that just about nobody in institutions does well.)

Note that Kanner reached this conclusion after analyzing 96 cases, not just the 11 mentioned.

(Translation: People realized this decades ago.)

Now, why is it that strong warnings against institutionalization are not issued by doctors and other professionals?

(Translation: Why don't doctors make that clear? or Doctors should make that clear.)

Why is it that instead some autism associations give the impression that institutionalization is indicated unless there's treatment?

(Translation: Why do some organizations (which should not be read as all organizations) say that the only choices are treatment or institutions, when that's not the case at all?)

I really don't understand how you're reading this to say that he advocates a treatment/institution dichotemy.

[kibbles.livejournal.com]

Which is what I said in my initial comment, that it made no sense, that the two paragraphs conflicted.

I am reading it different then you, if you say it reads that way, it makes sense. Perhaps the writing isn't clear enough for everyone. I cannot comprehend it.1

An as far as institutionalizing my son, it wasn't like that, I did not give you the details of the conversation, it had to do with what would happen if we were not alive and there was no one to care for him. Is it prudent to make financial arrangements for him, is there a chance he may never live independently? The answer to that was yes. I suppose he could try to live independently and be homeless worst case, but why would the doctor say NO! BAD FOR YOU TO PUT MONEY ASIDE, YOUR KID WILL BE FINE.

In fact I am a bit annoyed that the future was NOT brought up, as you have to plan in advance for the sorts of trusts needed for a child who may not be able to live independently.

Other than that, I still say I have not seen anyone suggest it, say it is a good idea, and that includes advocacy organizations. I'm not too deep with the organizations, though.

[conuly]

It's not that people say it's a good idea, it's that certain organizations repeat falsehoods about the number of autistics in institutions, and imply that there's an either/or choice.

[kibbles.livejournal.com]

Also I haven't seen anything about intitutions from Autism speaks but I've only glanced at their stuff on the surface. And people I know who do support them haven't mentioned that bit of it. I don't know squat about CAN.

[kibbles.livejournal.com]

I might also add that thankfully it appears that Iowa is loathe to put people in institutions and has many facilities that are of varying supervision. And they put their money where their mouth is, with things like the children at home grants and the supported community living services, both geared towards children (and later on, adults) of different abilities and needs as independent as possible.