Re: The dark side of autism

[Guest guest]

I found this article extremely difficult to read, and the conversations

online

that have followed it have been even more difficult for me today.

I've got 13 year old triplets with autism (2 girls, one boy), and we put

my son

into a group home at age 7 because of his extreme self-injury and aggression

(I couldn't keep him safe from himself, and couldn't keep the girls safe

from him).

Today I had to make the decision to start him on Thorazine (at 13 years

of age),

because he is hurting himself so badly, and putting himself and the

other group

home residents at risk. I would prefer Thorazine to a lock-down

hospital, so we're

going with that for right now.

One of the larger conversations that I followed today assumed that

the mother was abusing , and that's why he regressed in his late

teens. I was

appalled at the return to the refrigerator mother syndrome.

Autism is a spectrum. My kids have had early intervention, and every

safe intervention

and therapy that I could find since they were 20 months old. I AM

defensive about

my decision to place my son in a group home, because even though I've

done autism and multiple

birth support work for years and have talked to thousands of people, no

one ever wants to hear

that there are some situations where you just can't find a way to make

things better. I'll never stop

trying to make life better for Dylan, but we haven't found it yet.

I love my son so much that I die a bit more inside every time I think of

him living away from us. It's

still a nightmare to me that he doesn't live with us any more. I am

lucky that he is in a good home, and that most

of the time his home and I agree on treatments, scheduling, and most

things about him, and

that we get to see him regularly. Our big problem is communication,

because he literally eats

every communication device that we try. I still think that if we can

get communication at least a little

bit nailed down then we'll be further ahead.

I have seen so many, many people today expressing sympathy for the poor

mom who wrote this article.

I feel a lot more sympathy for . No matter how bad it seems for

his mom, at least she can write,

and talk, and look for support- avenues that seem to be denied to him.

I would just like people to realize that autism is a spectrum disorder,

which encompasses a great range of abilities and challenges. Almost

every other parent that I meet online is " trying something new and

getting great results (with a huge happy :-)!), getting through things,

or fighting about whether vaccinations or certain treatments are good or

bad. Early intervention and every therapy in the world does not " fix "

everything. We all want the best for our kids, and we all go through

very bad things and ask for support. I don't agree with everything that

Ann Bauer

wrote in the article, nor do I agree with some of her conclusions. But

as a parent of kids who are all over the

spectrum I think that maybe it's time for the neurodiversity,

anti-vaxxers, biomed advocates, moms who drink

way too much at dinner time in order to last until bedtime, parents who

don't really give a crap about anything

except their career, autistic adults who can communicate easily and

parents of autistic children who take on too much responsibility for

themselves at an early age- everyone, to acknowledge that autism IS a

spectrum.

Casdok <http://motherofshrek.blogspot.com/> is the only person who I've

ever seen adequately express what it is like to love your child enough to

let them live somewhere else in order try to make sure that they are

safe, and happy, and healthy, and her road

and her son's has not been easy.

Hug your children extra hard tonight. Imagine what it would be like if

you didn't know how their day went. That you didn't wake them up in the

morning, get them dressed, and send them off to school or run around the

house like crazy trying to clean up before the therapists got there.

Imagine never giving them a bath again, because you don't want to

disturb their routine of sensory baths before they go to bed at " home " .

Imagine watching your child run to the worker that he sees every single

day, instead of you, when they bonk their head on the playground.

I'm sorry that I'm having a meltdown here, but I've found some good

friends on this list and this has not been a good day. I know that

every one of my bad days is still better than most of the days that my

kids face, but I'm just feeling sorry for myself tonight because I've

been defending myself all day.

Jen

bridalsh wrote:

>

> http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

>

> The monster inside my son

>

> I found this story, it really made me think about my world and how

> very lucky I am to have a daughter.

>

> I am so glad I have my daughter Jen. She is short and even though she

> has some weight on her, she is manageable. She making improvements in

> language due to the drug " Namenda " which I have told everyone about in

> previous posting and in fact her aggression has improved also. I am

> not sure if the improvement in the aggression is due to " Namenda " or

> just the fact that there has been a reduction of stress in our home. I

> am sure both changes have helped my daughter: I am so glad that her

> aggression has decreased and I feel so blessed that I have my daughter!

>

> Take Care,

> Bev

>

>

[Guest guest]

I found this article extremely difficult to read, and the conversations

online

that have followed it have been even more difficult for me today.

I've got 13 year old triplets with autism (2 girls, one boy), and we put

my son

into a group home at age 7 because of his extreme self-injury and aggression

(I couldn't keep him safe from himself, and couldn't keep the girls safe

from him).

Today I had to make the decision to start him on Thorazine (at 13 years

of age),

because he is hurting himself so badly, and putting himself and the

other group

home residents at risk. I would prefer Thorazine to a lock-down

hospital, so we're

going with that for right now.

One of the larger conversations that I followed today assumed that

the mother was abusing , and that's why he regressed in his late

teens. I was

appalled at the return to the refrigerator mother syndrome.

Autism is a spectrum. My kids have had early intervention, and every

safe intervention

and therapy that I could find since they were 20 months old. I AM

defensive about

my decision to place my son in a group home, because even though I've

done autism and multiple

birth support work for years and have talked to thousands of people, no

one ever wants to hear

that there are some situations where you just can't find a way to make

things better. I'll never stop

trying to make life better for Dylan, but we haven't found it yet.

I love my son so much that I die a bit more inside every time I think of

him living away from us. It's

still a nightmare to me that he doesn't live with us any more. I am

lucky that he is in a good home, and that most

of the time his home and I agree on treatments, scheduling, and most

things about him, and

that we get to see him regularly. Our big problem is communication,

because he literally eats

every communication device that we try. I still think that if we can

get communication at least a little

bit nailed down then we'll be further ahead.

I have seen so many, many people today expressing sympathy for the poor

mom who wrote this article.

I feel a lot more sympathy for . No matter how bad it seems for

his mom, at least she can write,

and talk, and look for support- avenues that seem to be denied to him.

I would just like people to realize that autism is a spectrum disorder,

which encompasses a great range of abilities and challenges. Almost

every other parent that I meet online is " trying something new and

getting great results (with a huge happy :-)!), getting through things,

or fighting about whether vaccinations or certain treatments are good or

bad. Early intervention and every therapy in the world does not " fix "

everything. We all want the best for our kids, and we all go through

very bad things and ask for support. I don't agree with everything that

Ann Bauer

wrote in the article, nor do I agree with some of her conclusions. But

as a parent of kids who are all over the

spectrum I think that maybe it's time for the neurodiversity,

anti-vaxxers, biomed advocates, moms who drink

way too much at dinner time in order to last until bedtime, parents who

don't really give a crap about anything

except their career, autistic adults who can communicate easily and

parents of autistic children who take on too much responsibility for

themselves at an early age- everyone, to acknowledge that autism IS a

spectrum.

Casdok <http://motherofshrek.blogspot.com/> is the only person who I've

ever seen adequately express what it is like to love your child enough to

let them live somewhere else in order try to make sure that they are

safe, and happy, and healthy, and her road

and her son's has not been easy.

Hug your children extra hard tonight. Imagine what it would be like if

you didn't know how their day went. That you didn't wake them up in the

morning, get them dressed, and send them off to school or run around the

house like crazy trying to clean up before the therapists got there.

Imagine never giving them a bath again, because you don't want to

disturb their routine of sensory baths before they go to bed at " home " .

Imagine watching your child run to the worker that he sees every single

day, instead of you, when they bonk their head on the playground.

I'm sorry that I'm having a meltdown here, but I've found some good

friends on this list and this has not been a good day. I know that

every one of my bad days is still better than most of the days that my

kids face, but I'm just feeling sorry for myself tonight because I've

been defending myself all day.

Jen

bridalsh wrote:

>

> http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

>

> The monster inside my son

>

> I found this story, it really made me think about my world and how

> very lucky I am to have a daughter.

>

> I am so glad I have my daughter Jen. She is short and even though she

> has some weight on her, she is manageable. She making improvements in

> language due to the drug " Namenda " which I have told everyone about in

> previous posting and in fact her aggression has improved also. I am

> not sure if the improvement in the aggression is due to " Namenda " or

> just the fact that there has been a reduction of stress in our home. I

> am sure both changes have helped my daughter: I am so glad that her

> aggression has decreased and I feel so blessed that I have my daughter!

>

> Take Care,

> Bev

>

>

[Guest guest]

I found this article extremely difficult to read, and the conversations

online

that have followed it have been even more difficult for me today.

I've got 13 year old triplets with autism (2 girls, one boy), and we put

my son

into a group home at age 7 because of his extreme self-injury and aggression

(I couldn't keep him safe from himself, and couldn't keep the girls safe

from him).

Today I had to make the decision to start him on Thorazine (at 13 years

of age),

because he is hurting himself so badly, and putting himself and the

other group

home residents at risk. I would prefer Thorazine to a lock-down

hospital, so we're

going with that for right now.

One of the larger conversations that I followed today assumed that

the mother was abusing , and that's why he regressed in his late

teens. I was

appalled at the return to the refrigerator mother syndrome.

Autism is a spectrum. My kids have had early intervention, and every

safe intervention

and therapy that I could find since they were 20 months old. I AM

defensive about

my decision to place my son in a group home, because even though I've

done autism and multiple

birth support work for years and have talked to thousands of people, no

one ever wants to hear

that there are some situations where you just can't find a way to make

things better. I'll never stop

trying to make life better for Dylan, but we haven't found it yet.

I love my son so much that I die a bit more inside every time I think of

him living away from us. It's

still a nightmare to me that he doesn't live with us any more. I am

lucky that he is in a good home, and that most

of the time his home and I agree on treatments, scheduling, and most

things about him, and

that we get to see him regularly. Our big problem is communication,

because he literally eats

every communication device that we try. I still think that if we can

get communication at least a little

bit nailed down then we'll be further ahead.

I have seen so many, many people today expressing sympathy for the poor

mom who wrote this article.

I feel a lot more sympathy for . No matter how bad it seems for

his mom, at least she can write,

and talk, and look for support- avenues that seem to be denied to him.

I would just like people to realize that autism is a spectrum disorder,

which encompasses a great range of abilities and challenges. Almost

every other parent that I meet online is " trying something new and

getting great results (with a huge happy :-)!), getting through things,

or fighting about whether vaccinations or certain treatments are good or

bad. Early intervention and every therapy in the world does not " fix "

everything. We all want the best for our kids, and we all go through

very bad things and ask for support. I don't agree with everything that

Ann Bauer

wrote in the article, nor do I agree with some of her conclusions. But

as a parent of kids who are all over the

spectrum I think that maybe it's time for the neurodiversity,

anti-vaxxers, biomed advocates, moms who drink

way too much at dinner time in order to last until bedtime, parents who

don't really give a crap about anything

except their career, autistic adults who can communicate easily and

parents of autistic children who take on too much responsibility for

themselves at an early age- everyone, to acknowledge that autism IS a

spectrum.

Casdok <http://motherofshrek.blogspot.com/> is the only person who I've

ever seen adequately express what it is like to love your child enough to

let them live somewhere else in order try to make sure that they are

safe, and happy, and healthy, and her road

and her son's has not been easy.

Hug your children extra hard tonight. Imagine what it would be like if

you didn't know how their day went. That you didn't wake them up in the

morning, get them dressed, and send them off to school or run around the

house like crazy trying to clean up before the therapists got there.

Imagine never giving them a bath again, because you don't want to

disturb their routine of sensory baths before they go to bed at " home " .

Imagine watching your child run to the worker that he sees every single

day, instead of you, when they bonk their head on the playground.

I'm sorry that I'm having a meltdown here, but I've found some good

friends on this list and this has not been a good day. I know that

every one of my bad days is still better than most of the days that my

kids face, but I'm just feeling sorry for myself tonight because I've

been defending myself all day.

Jen

bridalsh wrote:

>

> http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

>

> The monster inside my son

>

> I found this story, it really made me think about my world and how

> very lucky I am to have a daughter.

>

> I am so glad I have my daughter Jen. She is short and even though she

> has some weight on her, she is manageable. She making improvements in

> language due to the drug " Namenda " which I have told everyone about in

> previous posting and in fact her aggression has improved also. I am

> not sure if the improvement in the aggression is due to " Namenda " or

> just the fact that there has been a reduction of stress in our home. I

> am sure both changes have helped my daughter: I am so glad that her

> aggression has decreased and I feel so blessed that I have my daughter!

>

> Take Care,

> Bev

>

>

[Guest guest]

Oh, Jen, I'm so sorry. *I* found the article difficult to read, I can't imagine

how you feel.

I really hope that you find something that helps him, even if it is Thorazine

for now. I'm sure if you've reached that point that you've already been through

a whole lot of other options.

I know that even parents of kids with autism, and even people with autism

themselves, have a hard time remembering the whole spectrum, unless they have

more than one child with ASD, or they spend a lot of time around other ASD

individuals. The things that we focus on are the things that we know best. I can

remember after I graduated college thinking " well, I know what autism looks

like. " After all, I'd worked with 2 kids in their home program, a classroom with

8 others, and 2 of my cousins were diagnosed during those years too. Surely,

with the range I'd seen in those 12 kids, I must know something about autism,

right? I'd been bitten and head butted and had a cubicle wall tipped on me. I'd

watched the same 3 seconds of Toy Story 2 enough times to see it when I closed

my eyes. I'd read BOOKS, for goodness sake! I even wrote a research paper for

some class. Of course I knew autism!

Obviously, I know better now Somehow, even though I have by now lost track of

the exact number of ASD kids I have worked with, I do still come across things I

have never seen before. All I know is that no kid with autism looks or acts like

any other kid with autism, and what may have worked miracles for one is a

disaster for another. I know that every parent and family member has to make

hard decisions every day, often with no information, no support, and little

hope...but lots of judgment. I know that the reactions of others when hearing

that you made the decision to have your son live away from you must be almost as

difficult to deal with as making it in the first place.

I have a friend that I worry about every day. She is a tiny little woman, maybe

5'1. Her severely autistic son is almost 18, 6' tall, and over 200 lbs. 98% of

the time, he is completely mellow and sweet, but last summer, he had a few weeks

of aggression (his drs think he may have been having small seizures that lead to

it, because later he had a grand mal and almost died). He threw her into a door,

and she was lucky all she got was bruises. She's a single mom with 6 and 4 year

old little girls too, but she won't even consider an alternative placement for

him yet, and I'm afraid for what could happen before she finally asks for help.

I admire your strength for being able to protect ALL of your children, even

though it is killing you to do it this way.

There is something I tell parents I work with all the time: You do the best you

can do with the information you have available at the time. That's all you can

do until you have new information. Sometimes it feels like it's NOT enough,

because it is so frequently difficult to GET the information you need to make

more choices. You usually can't just ask these kids, " What can I do to help? "

Even if they understand the question, they probably don't know any more than you

or I. And you can't ask their doctors or therapists or teachers and just get one

perfect for everyone answer either. So you do the best you can, on your own, and

if you don't like the results, you look for more information so that you know

what changes to make. I'm sorry it's such a slow process, and I wish there was a

guarantee that you will ever find an answer that allows your son to come home.

But I know, from reading your past posts and this one, that you will never stop

trying to get more information so that you can continue to do the most you can

possibly do to make life for your kids the best it can be.

((Hugs))

Amnesty

> >

> > http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> > <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

> >

> > The monster inside my son

> >

> > I found this story, it really made me think about my world and how

> > very lucky I am to have a daughter.

> >

> > I am so glad I have my daughter Jen. She is short and even though she

> > has some weight on her, she is manageable. She making improvements in

> > language due to the drug " Namenda " which I have told everyone about in

> > previous posting and in fact her aggression has improved also. I am

> > not sure if the improvement in the aggression is due to " Namenda " or

> > just the fact that there has been a reduction of stress in our home. I

> > am sure both changes have helped my daughter: I am so glad that her

> > aggression has decreased and I feel so blessed that I have my daughter!

> >

> > Take Care,

> > Bev

> >

> >

>

>

>

>

[Guest guest]

Oh, Jen, I'm so sorry. *I* found the article difficult to read, I can't imagine

how you feel.

I really hope that you find something that helps him, even if it is Thorazine

for now. I'm sure if you've reached that point that you've already been through

a whole lot of other options.

I know that even parents of kids with autism, and even people with autism

themselves, have a hard time remembering the whole spectrum, unless they have

more than one child with ASD, or they spend a lot of time around other ASD

individuals. The things that we focus on are the things that we know best. I can

remember after I graduated college thinking " well, I know what autism looks

like. " After all, I'd worked with 2 kids in their home program, a classroom with

8 others, and 2 of my cousins were diagnosed during those years too. Surely,

with the range I'd seen in those 12 kids, I must know something about autism,

right? I'd been bitten and head butted and had a cubicle wall tipped on me. I'd

watched the same 3 seconds of Toy Story 2 enough times to see it when I closed

my eyes. I'd read BOOKS, for goodness sake! I even wrote a research paper for

some class. Of course I knew autism!

Obviously, I know better now Somehow, even though I have by now lost track of

the exact number of ASD kids I have worked with, I do still come across things I

have never seen before. All I know is that no kid with autism looks or acts like

any other kid with autism, and what may have worked miracles for one is a

disaster for another. I know that every parent and family member has to make

hard decisions every day, often with no information, no support, and little

hope...but lots of judgment. I know that the reactions of others when hearing

that you made the decision to have your son live away from you must be almost as

difficult to deal with as making it in the first place.

I have a friend that I worry about every day. She is a tiny little woman, maybe

5'1. Her severely autistic son is almost 18, 6' tall, and over 200 lbs. 98% of

the time, he is completely mellow and sweet, but last summer, he had a few weeks

of aggression (his drs think he may have been having small seizures that lead to

it, because later he had a grand mal and almost died). He threw her into a door,

and she was lucky all she got was bruises. She's a single mom with 6 and 4 year

old little girls too, but she won't even consider an alternative placement for

him yet, and I'm afraid for what could happen before she finally asks for help.

I admire your strength for being able to protect ALL of your children, even

though it is killing you to do it this way.

There is something I tell parents I work with all the time: You do the best you

can do with the information you have available at the time. That's all you can

do until you have new information. Sometimes it feels like it's NOT enough,

because it is so frequently difficult to GET the information you need to make

more choices. You usually can't just ask these kids, " What can I do to help? "

Even if they understand the question, they probably don't know any more than you

or I. And you can't ask their doctors or therapists or teachers and just get one

perfect for everyone answer either. So you do the best you can, on your own, and

if you don't like the results, you look for more information so that you know

what changes to make. I'm sorry it's such a slow process, and I wish there was a

guarantee that you will ever find an answer that allows your son to come home.

But I know, from reading your past posts and this one, that you will never stop

trying to get more information so that you can continue to do the most you can

possibly do to make life for your kids the best it can be.

((Hugs))

Amnesty

> >

> > http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> > <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

> >

> > The monster inside my son

> >

> > I found this story, it really made me think about my world and how

> > very lucky I am to have a daughter.

> >

> > I am so glad I have my daughter Jen. She is short and even though she

> > has some weight on her, she is manageable. She making improvements in

> > language due to the drug " Namenda " which I have told everyone about in

> > previous posting and in fact her aggression has improved also. I am

> > not sure if the improvement in the aggression is due to " Namenda " or

> > just the fact that there has been a reduction of stress in our home. I

> > am sure both changes have helped my daughter: I am so glad that her

> > aggression has decreased and I feel so blessed that I have my daughter!

> >

> > Take Care,

> > Bev

> >

> >

>

>

>

>

[Guest guest]

Oh, Jen, I'm so sorry. *I* found the article difficult to read, I can't imagine

how you feel.

I really hope that you find something that helps him, even if it is Thorazine

for now. I'm sure if you've reached that point that you've already been through

a whole lot of other options.

I know that even parents of kids with autism, and even people with autism

themselves, have a hard time remembering the whole spectrum, unless they have

more than one child with ASD, or they spend a lot of time around other ASD

individuals. The things that we focus on are the things that we know best. I can

remember after I graduated college thinking " well, I know what autism looks

like. " After all, I'd worked with 2 kids in their home program, a classroom with

8 others, and 2 of my cousins were diagnosed during those years too. Surely,

with the range I'd seen in those 12 kids, I must know something about autism,

right? I'd been bitten and head butted and had a cubicle wall tipped on me. I'd

watched the same 3 seconds of Toy Story 2 enough times to see it when I closed

my eyes. I'd read BOOKS, for goodness sake! I even wrote a research paper for

some class. Of course I knew autism!

Obviously, I know better now Somehow, even though I have by now lost track of

the exact number of ASD kids I have worked with, I do still come across things I

have never seen before. All I know is that no kid with autism looks or acts like

any other kid with autism, and what may have worked miracles for one is a

disaster for another. I know that every parent and family member has to make

hard decisions every day, often with no information, no support, and little

hope...but lots of judgment. I know that the reactions of others when hearing

that you made the decision to have your son live away from you must be almost as

difficult to deal with as making it in the first place.

I have a friend that I worry about every day. She is a tiny little woman, maybe

5'1. Her severely autistic son is almost 18, 6' tall, and over 200 lbs. 98% of

the time, he is completely mellow and sweet, but last summer, he had a few weeks

of aggression (his drs think he may have been having small seizures that lead to

it, because later he had a grand mal and almost died). He threw her into a door,

and she was lucky all she got was bruises. She's a single mom with 6 and 4 year

old little girls too, but she won't even consider an alternative placement for

him yet, and I'm afraid for what could happen before she finally asks for help.

I admire your strength for being able to protect ALL of your children, even

though it is killing you to do it this way.

There is something I tell parents I work with all the time: You do the best you

can do with the information you have available at the time. That's all you can

do until you have new information. Sometimes it feels like it's NOT enough,

because it is so frequently difficult to GET the information you need to make

more choices. You usually can't just ask these kids, " What can I do to help? "

Even if they understand the question, they probably don't know any more than you

or I. And you can't ask their doctors or therapists or teachers and just get one

perfect for everyone answer either. So you do the best you can, on your own, and

if you don't like the results, you look for more information so that you know

what changes to make. I'm sorry it's such a slow process, and I wish there was a

guarantee that you will ever find an answer that allows your son to come home.

But I know, from reading your past posts and this one, that you will never stop

trying to get more information so that you can continue to do the most you can

possibly do to make life for your kids the best it can be.

((Hugs))

Amnesty

> >

> > http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> > <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

> >

> > The monster inside my son

> >

> > I found this story, it really made me think about my world and how

> > very lucky I am to have a daughter.

> >

> > I am so glad I have my daughter Jen. She is short and even though she

> > has some weight on her, she is manageable. She making improvements in

> > language due to the drug " Namenda " which I have told everyone about in

> > previous posting and in fact her aggression has improved also. I am

> > not sure if the improvement in the aggression is due to " Namenda " or

> > just the fact that there has been a reduction of stress in our home. I

> > am sure both changes have helped my daughter: I am so glad that her

> > aggression has decreased and I feel so blessed that I have my daughter!

> >

> > Take Care,

> > Bev

> >

> >

>

>

>

>

[Guest guest]

It is disturbing to think that any child could turn violent but there's a

lot of violence around for a lot of reasons and why should autistics young

people be so much different than the NTs.

I would love to think of my illness as one full of hearts and flowers but I

know that i have rages and that i haven't hurt anyone and have no such

intent but I can remember when my son turned 18 and just fell apart. Turning

a particular age has ramifications in this society and 18 is one big step. I

can see in hindsight how he felt adrift in the world with few recourses or

any future that he would want to experience. The jobs he had held were

pretty awful.

At one point he attempted to strangle me. He used to beat up his sister when

no one was around. He took his stepdads car at night when we were asleep. He

stole his credit cards. Finally he attempted suicide. He took things to pawn

He was dxed bipolar. There was no money for inpatient time. He was homeless

for a long time, refusing to even check out a homeless living situation. All

this time he was not using drugs or alcohol since he had gotten sober at 15

and was religious about his sobriety. He was in contact with some of his AA

and NA friends which is the way we got a little info on him aside from when

he broke in the house to eat and take a shower. He ended up in prison for a

time when his step father and his sister pressed charges against him.

Fortunately it wasn't a maximum security one.

Currently he is the father of five and has worked for the same company since

he was 25 or so. He was a single dad for years after his son's mother died.

I am not happy about the way he treats my grandson and the step

granddaughters. The youngest seems to me to be autistic though I have only

seen him once. I now wonder if my son has ASD like me. I also have a dx of

bipolar. I am hoping to sort out my problems with all my dxes with a

psychiatrist but I need to wait until the one I wish to see has an opening.

Perhaps am seeing this story through too much of my own story.

I also have a friend who is one of the most loving person I know who staffs

group homes. She has been assaulted and so have other staff by one

particular person. He is probably going to end up in a locked facility. My

feeling is that once a person goes the violence route it is hard for people

to accept that he changed (when he does) so it is hard to be released from

these institutions. Young men have such a hard time resisting the

temptation to be violent sometimes. I wish I knew how to show them why they

don't want to do it. Why they need to make the effort. Frustration and fear

are such a potent brew.

Most men who are not encouraged in some manner their violence will calm down

with age. One thing prisons do is encourage people to become more violent

rather than less so. Maybe someday we will have a systematic manner of

channeling aggression like many cultures do. We have lost that.

Meanwhile I still feel such rage when I think about certain things and feel

I have no control over my experience. I have thought about taking up

martial arts since it is all about learning to control ones impulses.

There are few moms who I would want to judge as poor moms. Most of them are

involved in drugs or alcohol and while I don't hate them I don't think they

should be responsible for the task of raising a child until they get sober.

I'm not so sure I did so well that I can look down on anyone. And I did do

the best I knew how. I have no idea if it was near enough. It's a tough

time and place to raise kids much less special kids.

I know a lot of ASD people will want to view all ASD people as " good "

people. But ASD people can do wrong things and hurtful things. We make

mistakes . We hurt people we love. It just makes us human. Not better or

worse.

Jen, I hope you don't think you have to defend yourself from me.

Nora

From: Autism_in_Girls_and_Women

[mailto:Autism_in_Girls_and_Women ] On Behalf Of jen

Sent: Friday, March 27, 2009 10:52 AM

To: Autism_in_Girls_and_Women

Subject: Re: The dark side of autism

I found this article extremely difficult to read, and the conversations

online that have followed it have been even more difficult for me today.

I've got 13 year old triplets with autism (2 girls, one boy), and we put my

son into a group home at age 7 because of his extreme self-injury and

aggression(I couldn't keep him safe from himself, and couldn't keep the

girls safe from him).

Today I had to make the decision to start him on Thorazine (at 13 years of

age), because he is hurting himself so badly, and putting himself and the

other group home residents at risk. I would prefer Thorazine to a lock-down

hospital, so we're going with that for right now.

One of the larger conversations that I followed today assumed that the

mother was abusing , and that's why he regressed in his late teens. I

was appalled at the return to the refrigerator mother syndrome.

Autism is a spectrum. My kids have had early intervention, and every safe

intervention and therapy that I could find since they were 20 months old. I

AM defensive about my decision to place my son in a group home, because

even though I've done autism and multiple birth support work for years and

have talked to thousands of people, no one ever wants to hear that there

are some situations where you just can't find a way to make things better.

I'll never stop trying to make life better for Dylan, but we haven't found

it yet.

I love my son so much that I die a bit more inside every time I think of

him living away from us. It's still a nightmare to me that he doesn't live

with us any more. I am lucky that he is in a good home, and that most of

the time his home and I agree on treatments, scheduling, and most things

about him, and that we get to see him regularly. Our big problem is

communication, because he literally eats every communication device that we

try. I still think that if we can get communication at least a little bit

nailed down then we'll be further ahead.

I have seen so many, many people today expressing sympathy for the poor mom

who wrote this article. I feel a lot more sympathy for . No matter how

bad it seems for his mom, at least she can write, and talk, and look for

support- avenues that seem to be denied to him.

I would just like people to realize that autism is a spectrum disorder,

which encompasses a great range of abilities and challenges. Almost every

other parent that I meet online is " trying something new and getting great

results (with a huge happy :-)!), getting through things, or fighting about

whether vaccinations or certain treatments are good or bad. Early

intervention and every therapy in the world does not " fix " everything. We

all want the best for our kids, and we all go through very bad things and

ask for support. I don't agree with everything that Ann Bauer wrote in the

article, nor do I agree with some of her conclusions. But as a parent of

kids who are all over the spectrum I think that maybe it's time for the

neurodiversity, anti-vaxxers, biomed advocates, moms who drink way too much

at dinner time in order to last until bedtime, parents who don't really

give a crap about anything except their career, autistic adults who can

communicate easily and parents of autistic children who take on too much

responsibility for

themselves at an early age- everyone, to acknowledge that autism IS a

spectrum.

Casdok <http://motherofshrek.blogspot.com/> is the only person who I've

ever seen adequately express what it is like to love your child enough to

let them live somewhere else in order try to make sure that they are safe,

and happy, and healthy, and her road

and her son's has not been easy.

Hug your children extra hard tonight. Imagine what it would be like if you

didn't know how their day went. That you didn't wake them up in the morning,

get them dressed, and send them off to school or run around the house like

crazy trying to clean up before the therapists got there. Imagine never

giving them a bath again, because you don't want to disturb their routine of

sensory baths before they go to bed at " home " . Imagine watching your child

run to the worker that he sees every single day, instead of you, when they

bonk their head on the playground.

I'm sorry that I'm having a meltdown here, but I've found some good friends

on this list and this has not been a good day. I know that every one of my

bad days is still better than most of the days that my kids face, but I'm

just feeling sorry for myself tonight because I've been defending myself all

day.

Jen

bridalsh wrote:

>

> http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

>

> The monster inside my son

>

> I found this story, it really made me think about my world and how very

lucky I am to have a daughter.

>

> I am so glad I have my daughter Jen. She is short and even though she

> has some weight on her, she is manageable. She making improvements in

> language due to the drug " Namenda " which I have told everyone about in

> previous posting and in fact her aggression has improved also. I am

> not sure if the improvement in the aggression is due to " Namenda " or

> just the fact that there has been a reduction of stress in our home. I

> am sure both changes have helped my daughter: I am so glad that her

> aggression has decreased and I feel so blessed that I have my daughter!

>

> Take Care,

> Bev

[Guest guest]

It is disturbing to think that any child could turn violent but there's a

lot of violence around for a lot of reasons and why should autistics young

people be so much different than the NTs.

I would love to think of my illness as one full of hearts and flowers but I

know that i have rages and that i haven't hurt anyone and have no such

intent but I can remember when my son turned 18 and just fell apart. Turning

a particular age has ramifications in this society and 18 is one big step. I

can see in hindsight how he felt adrift in the world with few recourses or

any future that he would want to experience. The jobs he had held were

pretty awful.

At one point he attempted to strangle me. He used to beat up his sister when

no one was around. He took his stepdads car at night when we were asleep. He

stole his credit cards. Finally he attempted suicide. He took things to pawn

He was dxed bipolar. There was no money for inpatient time. He was homeless

for a long time, refusing to even check out a homeless living situation. All

this time he was not using drugs or alcohol since he had gotten sober at 15

and was religious about his sobriety. He was in contact with some of his AA

and NA friends which is the way we got a little info on him aside from when

he broke in the house to eat and take a shower. He ended up in prison for a

time when his step father and his sister pressed charges against him.

Fortunately it wasn't a maximum security one.

Currently he is the father of five and has worked for the same company since

he was 25 or so. He was a single dad for years after his son's mother died.

I am not happy about the way he treats my grandson and the step

granddaughters. The youngest seems to me to be autistic though I have only

seen him once. I now wonder if my son has ASD like me. I also have a dx of

bipolar. I am hoping to sort out my problems with all my dxes with a

psychiatrist but I need to wait until the one I wish to see has an opening.

Perhaps am seeing this story through too much of my own story.

I also have a friend who is one of the most loving person I know who staffs

group homes. She has been assaulted and so have other staff by one

particular person. He is probably going to end up in a locked facility. My

feeling is that once a person goes the violence route it is hard for people

to accept that he changed (when he does) so it is hard to be released from

these institutions. Young men have such a hard time resisting the

temptation to be violent sometimes. I wish I knew how to show them why they

don't want to do it. Why they need to make the effort. Frustration and fear

are such a potent brew.

Most men who are not encouraged in some manner their violence will calm down

with age. One thing prisons do is encourage people to become more violent

rather than less so. Maybe someday we will have a systematic manner of

channeling aggression like many cultures do. We have lost that.

Meanwhile I still feel such rage when I think about certain things and feel

I have no control over my experience. I have thought about taking up

martial arts since it is all about learning to control ones impulses.

There are few moms who I would want to judge as poor moms. Most of them are

involved in drugs or alcohol and while I don't hate them I don't think they

should be responsible for the task of raising a child until they get sober.

I'm not so sure I did so well that I can look down on anyone. And I did do

the best I knew how. I have no idea if it was near enough. It's a tough

time and place to raise kids much less special kids.

I know a lot of ASD people will want to view all ASD people as " good "

people. But ASD people can do wrong things and hurtful things. We make

mistakes . We hurt people we love. It just makes us human. Not better or

worse.

Jen, I hope you don't think you have to defend yourself from me.

Nora

From: Autism_in_Girls_and_Women

[mailto:Autism_in_Girls_and_Women ] On Behalf Of jen

Sent: Friday, March 27, 2009 10:52 AM

To: Autism_in_Girls_and_Women

Subject: Re: The dark side of autism

I found this article extremely difficult to read, and the conversations

online that have followed it have been even more difficult for me today.

I've got 13 year old triplets with autism (2 girls, one boy), and we put my

son into a group home at age 7 because of his extreme self-injury and

aggression(I couldn't keep him safe from himself, and couldn't keep the

girls safe from him).

Today I had to make the decision to start him on Thorazine (at 13 years of

age), because he is hurting himself so badly, and putting himself and the

other group home residents at risk. I would prefer Thorazine to a lock-down

hospital, so we're going with that for right now.

One of the larger conversations that I followed today assumed that the

mother was abusing , and that's why he regressed in his late teens. I

was appalled at the return to the refrigerator mother syndrome.

Autism is a spectrum. My kids have had early intervention, and every safe

intervention and therapy that I could find since they were 20 months old. I

AM defensive about my decision to place my son in a group home, because

even though I've done autism and multiple birth support work for years and

have talked to thousands of people, no one ever wants to hear that there

are some situations where you just can't find a way to make things better.

I'll never stop trying to make life better for Dylan, but we haven't found

it yet.

I love my son so much that I die a bit more inside every time I think of

him living away from us. It's still a nightmare to me that he doesn't live

with us any more. I am lucky that he is in a good home, and that most of

the time his home and I agree on treatments, scheduling, and most things

about him, and that we get to see him regularly. Our big problem is

communication, because he literally eats every communication device that we

try. I still think that if we can get communication at least a little bit

nailed down then we'll be further ahead.

I have seen so many, many people today expressing sympathy for the poor mom

who wrote this article. I feel a lot more sympathy for . No matter how

bad it seems for his mom, at least she can write, and talk, and look for

support- avenues that seem to be denied to him.

I would just like people to realize that autism is a spectrum disorder,

which encompasses a great range of abilities and challenges. Almost every

other parent that I meet online is " trying something new and getting great

results (with a huge happy :-)!), getting through things, or fighting about

whether vaccinations or certain treatments are good or bad. Early

intervention and every therapy in the world does not " fix " everything. We

all want the best for our kids, and we all go through very bad things and

ask for support. I don't agree with everything that Ann Bauer wrote in the

article, nor do I agree with some of her conclusions. But as a parent of

kids who are all over the spectrum I think that maybe it's time for the

neurodiversity, anti-vaxxers, biomed advocates, moms who drink way too much

at dinner time in order to last until bedtime, parents who don't really

give a crap about anything except their career, autistic adults who can

communicate easily and parents of autistic children who take on too much

responsibility for

themselves at an early age- everyone, to acknowledge that autism IS a

spectrum.

Casdok <http://motherofshrek.blogspot.com/> is the only person who I've

ever seen adequately express what it is like to love your child enough to

let them live somewhere else in order try to make sure that they are safe,

and happy, and healthy, and her road

and her son's has not been easy.

Hug your children extra hard tonight. Imagine what it would be like if you

didn't know how their day went. That you didn't wake them up in the morning,

get them dressed, and send them off to school or run around the house like

crazy trying to clean up before the therapists got there. Imagine never

giving them a bath again, because you don't want to disturb their routine of

sensory baths before they go to bed at " home " . Imagine watching your child

run to the worker that he sees every single day, instead of you, when they

bonk their head on the playground.

I'm sorry that I'm having a meltdown here, but I've found some good friends

on this list and this has not been a good day. I know that every one of my

bad days is still better than most of the days that my kids face, but I'm

just feeling sorry for myself tonight because I've been defending myself all

day.

Jen

bridalsh wrote:

>

> http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

>

> The monster inside my son

>

> I found this story, it really made me think about my world and how very

lucky I am to have a daughter.

>

> I am so glad I have my daughter Jen. She is short and even though she

> has some weight on her, she is manageable. She making improvements in

> language due to the drug " Namenda " which I have told everyone about in

> previous posting and in fact her aggression has improved also. I am

> not sure if the improvement in the aggression is due to " Namenda " or

> just the fact that there has been a reduction of stress in our home. I

> am sure both changes have helped my daughter: I am so glad that her

> aggression has decreased and I feel so blessed that I have my daughter!

>

> Take Care,

> Bev

[Guest guest]

I read this article this morning and bawled my head off. Now I am crying at your

post.

I am one of the lucky ones whose child did respond to biomedical and early

intervention and will be transitioning into a typical 1st grade classroom at age

6. I thank God everyday for so many things to be grateful for in my child.

Your meltdown is just and I send you my blessings and prayers for you and Dylan

and your family.

Hugs,

Dana

Priscillas mom

> >

> > http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> > <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

> >

> > The monster inside my son

> >

> > I found this story, it really made me think about my world and how

> > very lucky I am to have a daughter.

> >

> > I am so glad I have my daughter Jen. She is short and even though she

> > has some weight on her, she is manageable. She making improvements in

> > language due to the drug " Namenda " which I have told everyone about in

> > previous posting and in fact her aggression has improved also. I am

> > not sure if the improvement in the aggression is due to " Namenda " or

> > just the fact that there has been a reduction of stress in our home. I

> > am sure both changes have helped my daughter: I am so glad that her

> > aggression has decreased and I feel so blessed that I have my daughter!

> >

> > Take Care,

> > Bev

> >

> >

>

>

>

>

[Guest guest]

I read this article this morning and bawled my head off. Now I am crying at your

post.

I am one of the lucky ones whose child did respond to biomedical and early

intervention and will be transitioning into a typical 1st grade classroom at age

6. I thank God everyday for so many things to be grateful for in my child.

Your meltdown is just and I send you my blessings and prayers for you and Dylan

and your family.

Hugs,

Dana

Priscillas mom

> >

> > http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> > <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

> >

> > The monster inside my son

> >

> > I found this story, it really made me think about my world and how

> > very lucky I am to have a daughter.

> >

> > I am so glad I have my daughter Jen. She is short and even though she

> > has some weight on her, she is manageable. She making improvements in

> > language due to the drug " Namenda " which I have told everyone about in

> > previous posting and in fact her aggression has improved also. I am

> > not sure if the improvement in the aggression is due to " Namenda " or

> > just the fact that there has been a reduction of stress in our home. I

> > am sure both changes have helped my daughter: I am so glad that her

> > aggression has decreased and I feel so blessed that I have my daughter!

> >

> > Take Care,

> > Bev

> >

> >

>

>

>

>

[Guest guest]

I read this article this morning and bawled my head off. Now I am crying at your

post.

I am one of the lucky ones whose child did respond to biomedical and early

intervention and will be transitioning into a typical 1st grade classroom at age

6. I thank God everyday for so many things to be grateful for in my child.

Your meltdown is just and I send you my blessings and prayers for you and Dylan

and your family.

Hugs,

Dana

Priscillas mom

> >

> > http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/

> > <http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/>

> >

> > The monster inside my son

> >

> > I found this story, it really made me think about my world and how

> > very lucky I am to have a daughter.

> >

> > I am so glad I have my daughter Jen. She is short and even though she

> > has some weight on her, she is manageable. She making improvements in

> > language due to the drug " Namenda " which I have told everyone about in

> > previous posting and in fact her aggression has improved also. I am

> > not sure if the improvement in the aggression is due to " Namenda " or

> > just the fact that there has been a reduction of stress in our home. I

> > am sure both changes have helped my daughter: I am so glad that her

> > aggression has decreased and I feel so blessed that I have my daughter!

> >

> > Take Care,

> > Bev

> >

> >

>

>

>

>

[Guest guest]

Jen, your situation is exactly what keeps me awake at night thinking about my

future of providing care to those with autism. I know there are non-responders

to biomed & /or educational interventions. Those of us who have responders are

very fortunate, and we need to figure out why some don't.

Debi

I AM

> defensive about my decision to place my son in a group home, because even

though I've done autism and multiple birth support work for years and have

talked to thousands of people, no one ever wants to hear

that there are some situations where you just can't find a way to make things

better. I'll never stop trying to make life better for Dylan, but we haven't

found it yet.

>

>

[Guest guest]

Jen, your situation is exactly what keeps me awake at night thinking about my

future of providing care to those with autism. I know there are non-responders

to biomed & /or educational interventions. Those of us who have responders are

very fortunate, and we need to figure out why some don't.

Debi

I AM

> defensive about my decision to place my son in a group home, because even

though I've done autism and multiple birth support work for years and have

talked to thousands of people, no one ever wants to hear

that there are some situations where you just can't find a way to make things

better. I'll never stop trying to make life better for Dylan, but we haven't

found it yet.

>

>

[Guest guest]

Jen, your situation is exactly what keeps me awake at night thinking about my

future of providing care to those with autism. I know there are non-responders

to biomed & /or educational interventions. Those of us who have responders are

very fortunate, and we need to figure out why some don't.

Debi

I AM

> defensive about my decision to place my son in a group home, because even

though I've done autism and multiple birth support work for years and have

talked to thousands of people, no one ever wants to hear

that there are some situations where you just can't find a way to make things

better. I'll never stop trying to make life better for Dylan, but we haven't

found it yet.

>

>

[Guest guest]

>

> Jen, your situation is exactly what keeps me awake at night thinking about my

future of providing care to those with autism. I know there are non-responders

to biomed & /or educational interventions. Those of us who have responders are

very fortunate, and we need to figure out why some don't.

>

> Debi

>

Well, I think the scariest thing about that article was that the young man in

question DID respond well to early intervention! If you go back and read some of

her past articles, before he became aggressive, he really sounded like he was

doing SO WELL! So, the issue is not only finding out why some kids respond and

some don't (my personal feeling is that it will be linked to

etiology...different causes are helped by different treatments), but why

regressions occur, especially such dramatic regressions

Amnnesty

[Guest guest]

>

> Jen, your situation is exactly what keeps me awake at night thinking about my

future of providing care to those with autism. I know there are non-responders

to biomed & /or educational interventions. Those of us who have responders are

very fortunate, and we need to figure out why some don't.

>

> Debi

>

Well, I think the scariest thing about that article was that the young man in

question DID respond well to early intervention! If you go back and read some of

her past articles, before he became aggressive, he really sounded like he was

doing SO WELL! So, the issue is not only finding out why some kids respond and

some don't (my personal feeling is that it will be linked to

etiology...different causes are helped by different treatments), but why

regressions occur, especially such dramatic regressions

Amnnesty

[Guest guest]

Dear group,

What did i do wrong here?

I don't understand and its breaking my heart.

I am so tired of feeling rejected.

Nora

>

> It is disturbing to think that any child could turn violent but there's a lot

of violence around for a lot of reasons and why should autistics young people be

so much different than the NTs.

> I would love to think of my illness as one full of hearts and flowers but I

> know that i have rages and that i haven't hurt anyone and have no such

> intent but I can remember when my son turned 18 and just fell apart. Turning

> a particular age has ramifications in this society and 18 is one big step. I

> can see in hindsight how he felt adrift in the world with few recourses or

> any future that he would want to experience. The jobs he had held were

> pretty awful.

> At one point he attempted to strangle me. He used to beat up his sister when

> no one was around. He took his stepdads car at night when we were asleep. He

> stole his credit cards. Finally he attempted suicide. He took things to pawn

> He was dxed bipolar. There was no money for inpatient time. He was homeless

> for a long time, refusing to even check out a homeless living situation. All

> this time he was not using drugs or alcohol since he had gotten sober at 15

> and was religious about his sobriety. He was in contact with some of his AA

> and NA friends which is the way we got a little info on him aside from when

> he broke in the house to eat and take a shower. He ended up in prison for a

> time when his step father and his sister pressed charges against him.

> Fortunately it wasn't a maximum security one.

> Currently he is the father of five and has worked for the same company since

> he was 25 or so. He was a single dad for years after his son's mother died.

> I am not happy about the way he treats my grandson and the step

> granddaughters. The youngest seems to me to be autistic though I have only

> seen him once. I now wonder if my son has ASD like me. I also have a dx of

> bipolar. I am hoping to sort out my problems with all my dxes with a

> psychiatrist but I need to wait until the one I wish to see has an opening.

> Perhaps am seeing this story through too much of my own story.

> I also have a friend who is one of the most loving person I know who staffs

> group homes. She has been assaulted and so have other staff by one

> particular person. He is probably going to end up in a locked facility. My

> feeling is that once a person goes the violence route it is hard for people

> to accept that he changed (when he does) so it is hard to be released from

> these institutions. Young men have such a hard time resisting the

> temptation to be violent sometimes. I wish I knew how to show them why they

> don't want to do it. Why they need to make the effort. Frustration and fear

> are such a potent brew.

> Most men who are not encouraged in some manner their violence will calm down

> with age. One thing prisons do is encourage people to become more violent

> rather than less so. Maybe someday we will have a systematic manner of

> channeling aggression like many cultures do. We have lost that.

> Meanwhile I still feel such rage when I think about certain things and feel

> I have no control over my experience. I have thought about taking up

> martial arts since it is all about learning to control ones impulses.

>

>

>

> There are few moms who I would want to judge as poor moms. Most of them are

> involved in drugs or alcohol and while I don't hate them I don't think they

> should be responsible for the task of raising a child until they get sober.

> I'm not so sure I did so well that I can look down on anyone. And I did do

> the best I knew how. I have no idea if it was near enough. It's a tough

> time and place to raise kids much less special kids.

> I know a lot of ASD people will want to view all ASD people as " good "

> people. But ASD people can do wrong things and hurtful things. We make

> mistakes . We hurt people we love. It just makes us human. Not better or

> worse.

> Jen, I hope you don't think you have to defend yourself from me.

>

> Nora

[Guest guest]

Dear group,

What did i do wrong here?

I don't understand and its breaking my heart.

I am so tired of feeling rejected.

Nora

>

> It is disturbing to think that any child could turn violent but there's a lot

of violence around for a lot of reasons and why should autistics young people be

so much different than the NTs.

> I would love to think of my illness as one full of hearts and flowers but I

> know that i have rages and that i haven't hurt anyone and have no such

> intent but I can remember when my son turned 18 and just fell apart. Turning

> a particular age has ramifications in this society and 18 is one big step. I

> can see in hindsight how he felt adrift in the world with few recourses or

> any future that he would want to experience. The jobs he had held were

> pretty awful.

> At one point he attempted to strangle me. He used to beat up his sister when

> no one was around. He took his stepdads car at night when we were asleep. He

> stole his credit cards. Finally he attempted suicide. He took things to pawn

> He was dxed bipolar. There was no money for inpatient time. He was homeless

> for a long time, refusing to even check out a homeless living situation. All

> this time he was not using drugs or alcohol since he had gotten sober at 15

> and was religious about his sobriety. He was in contact with some of his AA

> and NA friends which is the way we got a little info on him aside from when

> he broke in the house to eat and take a shower. He ended up in prison for a

> time when his step father and his sister pressed charges against him.

> Fortunately it wasn't a maximum security one.

> Currently he is the father of five and has worked for the same company since

> he was 25 or so. He was a single dad for years after his son's mother died.

> I am not happy about the way he treats my grandson and the step

> granddaughters. The youngest seems to me to be autistic though I have only

> seen him once. I now wonder if my son has ASD like me. I also have a dx of

> bipolar. I am hoping to sort out my problems with all my dxes with a

> psychiatrist but I need to wait until the one I wish to see has an opening.

> Perhaps am seeing this story through too much of my own story.

> I also have a friend who is one of the most loving person I know who staffs

> group homes. She has been assaulted and so have other staff by one

> particular person. He is probably going to end up in a locked facility. My

> feeling is that once a person goes the violence route it is hard for people

> to accept that he changed (when he does) so it is hard to be released from

> these institutions. Young men have such a hard time resisting the

> temptation to be violent sometimes. I wish I knew how to show them why they

> don't want to do it. Why they need to make the effort. Frustration and fear

> are such a potent brew.

> Most men who are not encouraged in some manner their violence will calm down

> with age. One thing prisons do is encourage people to become more violent

> rather than less so. Maybe someday we will have a systematic manner of

> channeling aggression like many cultures do. We have lost that.

> Meanwhile I still feel such rage when I think about certain things and feel

> I have no control over my experience. I have thought about taking up

> martial arts since it is all about learning to control ones impulses.

>

>

>

> There are few moms who I would want to judge as poor moms. Most of them are

> involved in drugs or alcohol and while I don't hate them I don't think they

> should be responsible for the task of raising a child until they get sober.

> I'm not so sure I did so well that I can look down on anyone. And I did do

> the best I knew how. I have no idea if it was near enough. It's a tough

> time and place to raise kids much less special kids.

> I know a lot of ASD people will want to view all ASD people as " good "

> people. But ASD people can do wrong things and hurtful things. We make

> mistakes . We hurt people we love. It just makes us human. Not better or

> worse.

> Jen, I hope you don't think you have to defend yourself from me.

>

> Nora

[Guest guest]

Definitely. I do wonder if some of Dr. Geier's theories about hormones may come

to play significantly during puberty. Maybe it's also cognitive growth & anger

in realizing one is considered different or feels isolated? That statement about

the one boy feeling indignant that he had learned pre-calc but was being taught

how to count change. That would have to be horribly frustrating to feel like

that.

I often wonder with puberty how much of it is regression & how much of it is

that the kids are feeling & thinking more on the inside and are feeling insane

with frustration that they just can't get it out and share how they feel. God

knows I don't have a fat clue how to get through adolescence with my NT

daughter, I feel even more inadequate with Allie & knowing how to navigate all

the issues in the right way. And, the majority of studies have only been done on

little kids, I don't recall any body of evidence directing

therapies,functioning, & parenting with teens on spectrum. During a time that

can be so difficult and fuel anger in a NT teen as she struggles to flee the

nest I can only imagine how much more all those feelings & physiological things

would be heightened.

And just to fuel the issue a little more, how many of these kids are getting

loaded up on vaccines at age 12, further screwing up their system that's already

messed up.

Debi

--- In Autism_in_Girls_and_Women , " Amnesty "

>

> Well, I think the scariest thing about that article was that the young man in

question DID respond well to early intervention! If you go back and read some of

her past articles, before he became aggressive, he really sounded like he was

doing SO WELL! So, the issue is not only finding out why some kids respond and

some don't (my personal feeling is that it will be linked to

etiology...different causes are helped by different treatments), but why

regressions occur, especially such dramatic regressions

> Amnnesty

>

[Guest guest]

Definitely. I do wonder if some of Dr. Geier's theories about hormones may come

to play significantly during puberty. Maybe it's also cognitive growth & anger

in realizing one is considered different or feels isolated? That statement about

the one boy feeling indignant that he had learned pre-calc but was being taught

how to count change. That would have to be horribly frustrating to feel like

that.

I often wonder with puberty how much of it is regression & how much of it is

that the kids are feeling & thinking more on the inside and are feeling insane

with frustration that they just can't get it out and share how they feel. God

knows I don't have a fat clue how to get through adolescence with my NT

daughter, I feel even more inadequate with Allie & knowing how to navigate all

the issues in the right way. And, the majority of studies have only been done on

little kids, I don't recall any body of evidence directing

therapies,functioning, & parenting with teens on spectrum. During a time that

can be so difficult and fuel anger in a NT teen as she struggles to flee the

nest I can only imagine how much more all those feelings & physiological things

would be heightened.

And just to fuel the issue a little more, how many of these kids are getting

loaded up on vaccines at age 12, further screwing up their system that's already

messed up.

Debi

--- In Autism_in_Girls_and_Women , " Amnesty "

>

> Well, I think the scariest thing about that article was that the young man in

question DID respond well to early intervention! If you go back and read some of

her past articles, before he became aggressive, he really sounded like he was

doing SO WELL! So, the issue is not only finding out why some kids respond and

some don't (my personal feeling is that it will be linked to

etiology...different causes are helped by different treatments), but why

regressions occur, especially such dramatic regressions

> Amnnesty

>

[Guest guest]

Definitely. I do wonder if some of Dr. Geier's theories about hormones may come

to play significantly during puberty. Maybe it's also cognitive growth & anger

in realizing one is considered different or feels isolated? That statement about

the one boy feeling indignant that he had learned pre-calc but was being taught

how to count change. That would have to be horribly frustrating to feel like

that.

I often wonder with puberty how much of it is regression & how much of it is

that the kids are feeling & thinking more on the inside and are feeling insane

with frustration that they just can't get it out and share how they feel. God

knows I don't have a fat clue how to get through adolescence with my NT

daughter, I feel even more inadequate with Allie & knowing how to navigate all

the issues in the right way. And, the majority of studies have only been done on

little kids, I don't recall any body of evidence directing

therapies,functioning, & parenting with teens on spectrum. During a time that

can be so difficult and fuel anger in a NT teen as she struggles to flee the

nest I can only imagine how much more all those feelings & physiological things

would be heightened.

And just to fuel the issue a little more, how many of these kids are getting

loaded up on vaccines at age 12, further screwing up their system that's already

messed up.

Debi

--- In Autism_in_Girls_and_Women , " Amnesty "

>

> Well, I think the scariest thing about that article was that the young man in

question DID respond well to early intervention! If you go back and read some of

her past articles, before he became aggressive, he really sounded like he was

doing SO WELL! So, the issue is not only finding out why some kids respond and

some don't (my personal feeling is that it will be linked to

etiology...different causes are helped by different treatments), but why

regressions occur, especially such dramatic regressions

> Amnnesty

>

[Guest guest]

Nora I to not think you did of anything wrong but have only been of skimmin the

post this day because of not being of well and had of too much errands and

crisis like things from the kids of me calling of me over and over to fix all

thier issues this day even though told them no they kept of calling/

sondra

[Guest guest]

I suppose its just me being selfish and needy again. i started writing bummer

poetry after posting.

I just don't know what to do with me today. i can't be with people and i can't

not be with people. I want to connect and i'm afraid to try to connect.

Nora

>

> Nora I to not think you did of anything wrong but have only been of skimmin

the post this day because of not being of well and had of too much errands and

crisis like things from the kids of me calling of me over and over to fix all

thier issues this day even though told them no they kept of calling/

>

> sondra

[Guest guest]

Nora,

You are wonderful, this just about bad things happen and no body understand why?

It has nothing to do with autism, other then bad things can happen to good

people. You are wonderful. It will not happen to you!

Bev

[Guest guest]

http://fredericksburg.com/News/FLS/2009/032009/03132009/443812/index_html?page=3

dont we all wish we can do that (see link)

________________________________

To: Autism_in_Girls_and_Women

Sent: Friday, March 27, 2009 6:27:14 AM

Subject: RE: The dark side of autism

It is disturbing to think that any child could turn violent but there's a

lot of violence around for a lot of reasons and why should autistics young

people be so much different than the NTs.

I would love to think of my illness as one full of hearts and flowers but I

know that i have rages and that i haven't hurt anyone and have no such

intent but I can remember when my son turned 18 and just fell apart. Turning

a particular age has ramifications in this society and 18 is one big step. I

can see in hindsight how he felt adrift in the world with few recourses or

any future that he would want to experience. The jobs he had held were

pretty awful.

At one point he attempted to strangle me. He used to beat up his sister when

no one was around. He took his stepdads car at night when we were asleep. He

stole his credit cards. Finally he attempted suicide. He took things to pawn

He was dxed bipolar. There was no money for inpatient time. He was homeless

for a long time, refusing to even check out a homeless living situation. All

this time he was not using drugs or alcohol since he had gotten sober at 15

and was religious about his sobriety. He was in contact with some of his AA

and NA friends which is the way we got a little info on him aside from when

he broke in the house to eat and take a shower. He ended up in prison for a

time when his step father and his sister pressed charges against him.

Fortunately it wasn't a maximum security one.

Currently he is the father of five and has worked for the same company since

he was 25 or so. He was a single dad for years after his son's mother died.

I am not happy about the way he treats my grandson and the step

granddaughters. The youngest seems to me to be autistic though I have only

seen him once. I now wonder if my son has ASD like me. I also have a dx of

bipolar. I am hoping to sort out my problems with all my dxes with a

psychiatrist but I need to wait until the one I wish to see has an opening.

Perhaps am seeing this story through too much of my own story.

I also have a friend who is one of the most loving person I know who staffs

group homes. She has been assaulted and so have other staff by one

particular person. He is probably going to end up in a locked facility. My

feeling is that once a person goes the violence route it is hard for people

to accept that he changed (when he does) so it is hard to be released from

these institutions. Young men have such a hard time resisting the

temptation to be violent sometimes. I wish I knew how to show them why they

don't want to do it. Why they need to make the effort. Frustration and fear

are such a potent brew.

Most men who are not encouraged in some manner their violence will calm down

with age. One thing prisons do is encourage people to become more violent

rather than less so. Maybe someday we will have a systematic manner of

channeling aggression like many cultures do. We have lost that.

Meanwhile I still feel such rage when I think about certain things and feel

I have no control over my experience. I have thought about taking up

martial arts since it is all about learning to control ones impulses.

There are few moms who I would want to judge as poor moms. Most of them are

involved in drugs or alcohol and while I don't hate them I don't think they

should be responsible for the task of raising a child until they get sober.

I'm not so sure I did so well that I can look down on anyone. And I did do

the best I knew how. I have no idea if it was near enough. It's a tough

time and place to raise kids much less special kids.

I know a lot of ASD people will want to view all ASD people as " good "

people. But ASD people can do wrong things and hurtful things. We make

mistakes . We hurt people we love. It just makes us human. Not better or

worse.

Jen, I hope you don't think you have to defend yourself from me.

Nora

From: Autism_in_Girls_ and_Women@ yahoogroups. com

[mailto:Autism_in_Girls_ and_Women@ yahoogroups. com] On Behalf Of jen

Sent: Friday, March 27, 2009 10:52 AM

To: Autism_in_Girls_ and_Women@ yahoogroups. com

Subject: Re: [Autism_in_Girls_ and_Women] The dark side of autism

I found this article extremely difficult to read, and the conversations

online that have followed it have been even more difficult for me today.

I've got 13 year old triplets with autism (2 girls, one boy), and we put my

son into a group home at age 7 because of his extreme self-injury and

aggression(I couldn't keep him safe from himself, and couldn't keep the

girls safe from him).

Today I had to make the decision to start him on Thorazine (at 13 years of

age), because he is hurting himself so badly, and putting himself and the

other group home residents at risk. I would prefer Thorazine to a lock-down

hospital, so we're going with that for right now.

One of the larger conversations that I followed today assumed that the

mother was abusing , and that's why he regressed in his late teens. I

was appalled at the return to the refrigerator mother syndrome.

Autism is a spectrum. My kids have had early intervention, and every safe

intervention and therapy that I could find since they were 20 months old. I

AM defensive about my decision to place my son in a group home, because

even though I've done autism and multiple birth support work for years and

have talked to thousands of people, no one ever wants to hear that there

are some situations where you just can't find a way to make things better.

I'll never stop trying to make life better for Dylan, but we haven't found

it yet.

I love my son so much that I die a bit more inside every time I think of

him living away from us. It's still a nightmare to me that he doesn't live

with us any more. I am lucky that he is in a good home, and that most of

the time his home and I agree on treatments, scheduling, and most things

about him, and that we get to see him regularly. Our big problem is

communication, because he literally eats every communication device that we

try. I still think that if we can get communication at least a little bit

nailed down then we'll be further ahead.

I have seen so many, many people today expressing sympathy for the poor mom

who wrote this article. I feel a lot more sympathy for . No matter how

bad it seems for his mom, at least she can write, and talk, and look for

support- avenues that seem to be denied to him.

I would just like people to realize that autism is a spectrum disorder,

which encompasses a great range of abilities and challenges. Almost every

other parent that I meet online is " trying something new and getting great

results (with a huge happy :-)!), getting through things, or fighting about

whether vaccinations or certain treatments are good or bad. Early

intervention and every therapy in the world does not " fix " everything. We

all want the best for our kids, and we all go through very bad things and

ask for support. I don't agree with everything that Ann Bauer wrote in the

article, nor do I agree with some of her conclusions. But as a parent of

kids who are all over the spectrum I think that maybe it's time for the

neurodiversity, anti-vaxxers, biomed advocates, moms who drink way too much

at dinner time in order to last until bedtime, parents who don't really

give a crap about anything except their career, autistic adults who can

communicate easily and parents of autistic children who take on too much

responsibility for

themselves at an early age- everyone, to acknowledge that autism IS a

spectrum.

Casdok <http://motherofshre k.blogspot. com/> is the only person who I've

ever seen adequately express what it is like to love your child enough to

let them live somewhere else in order try to make sure that they are safe,

and happy, and healthy, and her road

and her son's has not been easy.

Hug your children extra hard tonight. Imagine what it would be like if you

didn't know how their day went. That you didn't wake them up in the morning,

get them dressed, and send them off to school or run around the house like

crazy trying to clean up before the therapists got there. Imagine never

giving them a bath again, because you don't want to disturb their routine of

sensory baths before they go to bed at " home " . Imagine watching your child

run to the worker that he sees every single day, instead of you, when they

bonk their head on the playground.

I'm sorry that I'm having a meltdown here, but I've found some good friends

on this list and this has not been a good day. I know that every one of my

bad days is still better than most of the days that my kids face, but I'm

just feeling sorry for myself tonight because I've been defending myself all

day.

Jen

bridalsh wrote:

>

> http://www.salon. com/mwt/feature/ 2009/03/26/ bauer_autism/

> <http://www.salon. com/mwt/feature/ 2009/03/26/ bauer_autism/>

>

> The monster inside my son

>

> I found this story, it really made me think about my world and how very

lucky I am to have a daughter.

>

> I am so glad I have my daughter Jen. She is short and even though she

> has some weight on her, she is manageable. She making improvements in

> language due to the drug " Namenda " which I have told everyone about in

> previous posting and in fact her aggression has improved also. I am

> not sure if the improvement in the aggression is due to " Namenda " or

> just the fact that there has been a reduction of stress in our home. I

> am sure both changes have helped my daughter: I am so glad that her

> aggression has decreased and I feel so blessed that I have my daughter!

>

> Take Care,

> Bev