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Girls father
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23 Sep 2017, 2:27 pm

Anybody has a child (3 to 6 years old) whos been taking aripiprazole for more than 6 months? Which dose? Has it been effective? Improved attention?
Any unusual side effects?



magz
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23 Sep 2017, 2:54 pm

Ariprazole is an anti-psychotic drug, how should it improve attention?


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Girls father
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23 Sep 2017, 4:12 pm

Psychoactive drugs aren't so black and white.

https://www.ncbi.nlm.nih.gov/pubmed/27278054

Im asking here because reading personal experiences might give information that you cant get from a RCT.



eikonabridge
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24 Sep 2017, 3:21 am

Girls father wrote:
Anybody has a child (3 to 6 years old) whos been taking aripiprazole for more than 6 months? Which dose? Has it been effective? Improved attention?
Any unusual side effects?


What can I say? To me, once a parent starts to view autism as a medical issue, that's pretty much it.

Not that I can talk you out of it. But I just want to offer my perspective as a parent whose child was hyperactive like a ping-pong ball bouncing around the house at age 2.5. He was non-verbal, had zero eye contact, and couldn't focus on any static images, let alone read letters or words. By then, he has also had one year of ABA, but he wasn't even able to call me "Papa."

Notice I am not hiding my name here.

The thing is, after I figured out how to interact with my son, in a few days he called me "Papa" for the first time. In less than 6 months he was reading books... before he was 3 years old. Today, he attends a public elementary school in mainstream setting. He is very creative. He is always happy and smiling, and darling to all teachers and therapists.

I don't think you'll ever be able to achieve the outcome I have achieved. But I just wanted to give you a different perspective. I have never considered autism as a medical issue. I have never considered my children as defective. While other parents will tell you how hard it is to raise autistic children, I can tell you that, after I understood my son, life has been easy and full of fun. My children are always happy and smiling. Consider my wife's words. She says, if she had a choice and could do it all over again, she would still choose to raise autistic children. Life is just so much more fun. She is a neurotypical person, by the way.

There is a different way of looking at autism. What you consider as social, behavioral, sensory and speech issues, to me, are all just a case of "children behaving like children."

It's hard for me to convince anyone that there is really a different way. But I have been surprised that people have actually come to understand what I mean so much better, after I shared with them a letter I wrote to my son, for his 8th birthday. I read the letter together with him on a train trip, on his birthday. I read some passages, and he read some others. He had fun reading the letter, as you can see from the picture inside the PDF document. He really had big smiles. But trust me, he understood everything. I basically told my son that he was not born to "fit in," but to "stand out." That he was born to be a leader, not a follower. I told him not to let anyone tell him that he needed to conform. that his destiny was to rise up above the world.

That has always been my attitude, from the very beginning. As I have said, my life has been easy and fun, even with my two autistic children. And I don't think my children have had a different starting point compared to other children on the spectrum.

My point here simply is, there IS an alternative to the medical view of autism. There is a way to treat these children with respect, as equal-rights human beings, and not as sick or defective.

I share the letter here. It really has no secrets. But the thing is, out of respect for my son, I have masked out the more personal passages. I needed to do that because, otherwise, the letter would lose its personal touch as a family letter.

http://www.eikonabridge.com/Ivan_8th_birthday.pdf


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magz
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24 Sep 2017, 4:48 am

Girls father wrote:
Psychoactive drugs aren't so black and white.

https://www.ncbi.nlm.nih.gov/pubmed/27278054

Im asking here because reading personal experiences might give information that you cant get from a RCT.

Psych drugs aren't black and white, sure. I myself take escitalopram for depression and very small doses of quetiapine for insomnia.
They aren't black and white but they are definitely dangerous. I've had a really hellish expirience with risperidone after a missed diagnosis and I couldn't convince the doctor it's not working the way it should. A small autistic child would be way more helpless in a similar situation.

So before using any drugs, please, make sure you have really good contact with your kid and that you are able to react for the faintiest and probably clumsy signals that anything is going wrong.


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Girls father
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24 Sep 2017, 7:36 am

eikonabridge wrote:
Girls father wrote:
Anybody has a child (3 to 6 years old) whos been taking aripiprazole for more than 6 months? Which dose? Has it been effective? Improved attention?
Any unusual side effects?


What can I say? To me, once a parent starts to view autism as a medical issue, that's pretty much it.

Not that I can talk you out of it. But I just want to offer my perspective as a parent whose child was hyperactive like a ping-pong ball bouncing around the house at age 2.5. He was non-verbal, had zero eye contact, and couldn't focus on any static images, let alone read letters or words. By then, he has also had one year of ABA, but he wasn't even able to call me "Papa."

Notice I am not hiding my name here.

The thing is, after I figured out how to interact with my son, in a few days he called me "Papa" for the first time. In less than 6 months he was reading books... before he was 3 years old. Today, he attends a public elementary school in mainstream setting. He is very creative. He is always happy and smiling, and darling to all teachers and therapists.

I don't think you'll ever be able to achieve the outcome I have achieved. But I just wanted to give you a different perspective. I have never considered autism as a medical issue. I have never considered my children as defective. While other parents will tell you how hard it is to raise autistic children, I can tell you that, after I understood my son, life has been easy and full of fun. My children are always happy and smiling. Consider my wife's words. She says, if she had a choice and could do it all over again, she would still choose to raise autistic children. Life is just so much more fun. She is a neurotypical person, by the way.

There is a different way of looking at autism. What you consider as social, behavioral, sensory and speech issues, to me, are all just a case of "children behaving like children."

It's hard for me to convince anyone that there is really a different way. But I have been surprised that people have actually come to understand what I mean so much better, after I shared with them a letter I wrote to my son, for his 8th birthday. I read the letter together with him on a train trip, on his birthday. I read some passages, and he read some others. He had fun reading the letter, as you can see from the picture inside the PDF document. He really had big smiles. But trust me, he understood everything. I basically told my son that he was not born to "fit in," but to "stand out." That he was born to be a leader, not a follower. I told him not to let anyone tell him that he needed to conform. that his destiny was to rise up above the world.

That has always been my attitude, from the very beginning. As I have said, my life has been easy and fun, even with my two autistic children. And I don't think my children have had a different starting point compared to other children on the spectrum.

My point here simply is, there IS an alternative to the medical view of autism. There is a way to treat these children with respect, as equal-rights human beings, and not as sick or defective.

I share the letter here. It really has no secrets. But the thing is, out of respect for my son, I have masked out the more personal passages. I needed to do that because, otherwise, the letter would lose its personal touch as a family letter.

http://www.eikonabridge.com/Ivan_8th_birthday.pdf


Hiding or not a personal name is a personal choice. It doesn't have anything to do with the love I have for my child. By the way, you have a personal reason for not concealing your name. You're selling a book, right?

Autism is not merely a medical condition, sure, but it's a developmental condition that often leads to several kinds of strugles. Saying that it's just "children being children" is making up a stupid fairy tale that isn't useful to parents of autistic children, nor to autistic children themselves, specially those who are not "high functioning" (a term that I dont like that much, but for which I don't know any substitute).

If you don't think autism is a condition, why then didn't you fire all the therapists when you "figured out how to interact" with your son?

"I don't think you'll ever be able to achieve the outcome I have achieved"

I'll tell you what. It wasn't you who achieved that outcome, it was your son. And you don't know me and much less know my daughter to have a clue if I or her will achieve similar outcome. I'm not here to see people brag about their "success" and say I won't "achieve" the same. I'm here to gather information and help, not to be blindly judged.
By the way I strongly suspect those therapies (who were originally developed to make kids achieve "normal functioning" - which I disagree putting in those terms) had a great deal in your son's outcome.
Every autistic child has a different developmental path, and unfortunately some won't achieve an optimum outcome, independently of how good their parenting was, and that's not to be judged, which would be cruel and stupid.

I asked about a medication not because I'm treating autism as an infectious disease or cancer. I asked that because in some cases it might make learning easier.

If I could come back in time I would never want to have another child, but not because she is autistic, but because she is my daughter and I love her the way she is. I just want her to be a functional human being, even if she is functional in her own terms.

I agree autistic people have rights and they should not be treated as sick. That's why they should get help.



Last edited by Girls father on 24 Sep 2017, 9:08 am, edited 1 time in total.

Girls father
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24 Sep 2017, 8:02 am

magz wrote:
Girls father wrote:
Psychoactive drugs aren't so black and white.

https://www.ncbi.nlm.nih.gov/pubmed/27278054

Im asking here because reading personal experiences might give information that you cant get from a RCT.

Psych drugs aren't black and white, sure. I myself take escitalopram for depression and very small doses of quetiapine for insomnia.
They aren't black and white but they are definitely dangerous. I've had a really hellish expirience with risperidone after a missed diagnosis and I couldn't convince the doctor it's not working the way it should. A small autistic child would be way more helpless in a similar situation.

So before using any drugs, please, make sure you have really good contact with your kid and that you are able to react for the faintiest and probably clumsy signals that anything is going wrong.


I agree with everything you said. That's why I opened the topic. It's not always easy to know how to deal with side effects when they struck a not fully verbal autistic child. Every autistic child is different, but maybe I could get clues to what might happen, that as I said, I wouldn't get in a controled trial.

Side effects depend a lot on the dose also, besides individual response. I know psychiatrists who keep increasing the dose until the medication is not tolerable and then switch medication. I'm not a psychiatrist, but judging by what I know so far in the case of autistic people, you want to keep the dose as small as possible, being only high enough to be effective.

ADAH, as autism, is a condition, not a disease, but often medication is highly effective if properly used.



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24 Sep 2017, 8:34 am

I don't have any experience with this medication. The only thing I'd say is from personal bias - 4 is awfully young for anti psychotics or really any of the mental illness meds. Some kids really have serious mental illness issues, but I don't consider autism to be in the same camp.

Your daughter still has time to develop. She's only 4, so needing strong attending skills and academic accomplishments are several years away. I'd wait to see how she develops. Our ASD babies develop much differently than NT children, and rapid gains in some areas happen almost overnight while others stagnate for years. I think it may be too soon to tell what your daughter will actually need, because she's essentially still a toddler (take her age and multiply it be 2/3, and you get the avg ASD age equivalent).

So, if it were me, I'd hold off. My twin boys are 6 now, both ASD, and what they're like today is worlds different from what they were like at 4. One still looks like he may have ADHD as a co-morbid, but we're watching and waiting there too. I did hold them both back one year to give them some time to mature, so even though they're 6, they just started kindergarten. And they're doing great, much better than I would have thought had you asked me for my prediction 2 years ago.

So, if it were me, I'd keep up with the therapy and re-evaluate once she's older. That's just me. Good luck papa!



Girls father
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24 Sep 2017, 9:53 am

pddtwinmom wrote:
I don't have any experience with this medication. The only thing I'd say is from personal bias - 4 is awfully young for anti psychotics or really any of the mental illness meds. Some kids really have serious mental illness issues, but I don't consider autism to be in the same camp.

Your daughter still has time to develop. She's only 4, so needing strong attending skills and academic accomplishments are several years away. I'd wait to see how she develops. Our ASD babies develop much differently than NT children, and rapid gains in some areas happen almost overnight while others stagnate for years. I think it may be too soon to tell what your daughter will actually need, because she's essentially still a toddler (take her age and multiply it be 2/3, and you get the avg ASD age equivalent).

So, if it were me, I'd hold off. My twin boys are 6 now, both ASD, and what they're like today is worlds different from what they were like at 4. One still looks like he may have ADHD as a co-morbid, but we're watching and waiting there too. I did hold them both back one year to give them some time to mature, so even though they're 6, they just started kindergarten. And they're doing great, much better than I would have thought had you asked me for my prediction 2 years ago.

So, if it were me, I'd keep up with the therapy and re-evaluate once she's older. That's just me. Good luck papa!


She doesn't have many episodes of irritability and I know autism isn't a mental illness.
A pediatric neurologist we visited suggested she could take risperidone to diminish ADHD symptoms and improve learning (thats not the label purpose of the medication, but apparently it has been used for that purpose for a while).
I asked about aripiprazole use, because studies suggest it has lesser side effects than risperidone, on other hand, it's a newer medication and less well known.
To be very honest, I didn't want her to take any medication, but I'm worried.

In terms of waiting, I'm worried we'll waste potentially precious learning time. I'm trying to carefully decide what's best to do now. That's why we didn't start the meds yet.



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24 Sep 2017, 10:08 am

I hear you. And I understand the worry, I really do. My opinion is that she has plenty of time - 4 is very young. Experts are now recommending 7 as an appropriate age to learn how to read. And she's learning every day, even if she can't express it to you. By 6, she'll be more verbal and you'll see what results you've gained through the non-medical interventions. And she'll be starting formal school, where the expectation won't be that she knows how to read, do math, etc. That's not the expectation for any kindergarten or first grade student. So, to me, that seems like a good time to reevaluate medication. Because you'll have a good sense of where she is cognitively.

That's just my perspective. Parents are always the experts on their own children, so please take everything with a grain of salt. If you decide that medication is the way to go, it's probably the right decision. And if it's not, you'll fix it. You've got this!



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24 Sep 2017, 10:43 am

Girls father wrote:
Autism is not merely a medical condition, sure, but it's a developmental condition that often leads to several kinds of strugles. Saying that it's just "children being children" is making up a stupid fairy tale that isn't useful to parents of autistic children, nor to autistic children themselves, specially those who are not "high functioning" (a term that I dont like that much, but for which I don't know any substitute).


You have your point of view, I have mine.

Tell me, when my son was 2.5 years old, did he qualify as high functioning? As an anecdote, let me tell you about our pediatrician. We have been using the same pediatrician doctor. He is very old, now. He has seen it all, basically. Every time my wife took my children to him, he was always surprised to see the progress of our children, it defied his expectation. He asked my wife what the trick was. My wife told him that Jason used Fourier Transform to raise the children. The doctor had those incredulous eyes, ha ha. He told my wife he knew what Fourier Transform was. He is a good doctor. He has been searching for alternative explanations. In his mind, there must be another explanation, it cannot just be Fourier Transforms, ha ha. (What my wife meant by Fourier Transform is what I call "modulation.")

Quote:
If you don't think autism is a condition, why then didn't you fire all the therapists when you "figured out how to interact" with your son?


Sure, I have fired plenty of therapists, when they didn't listen to me. I have fired a private pre-school, when I saw they did not know about educating autistic children. See, my children are now in public school, now. I am a control freak, I guess. I don't have as much decision power in public schools. Today's public education has largely "Asianized" in the sense of stuffing skills to the children to the point of killing their creativity. At home, with ABA, my children have room for creativity. They get to draw pictures, read some books, take a walk, and express their ideas on a one-on-one basis. You don't get those opportunities in schools. ABA therapists are under parents' control: they listen to you. That being said, I did plan to discontinue ABA for my daughter already last year. My wife begged me and insisted, because she still see residual value. But even the ABA people were starting to feel uncomfortable. So, for sure, next year my daughter's ABA will be discontinued. I fully expect the same thing for my son at some point.

See, I tell you why I know it was me and not ABA that helped my son. Because I can tell you the precise thing and moment when my son learned something. I can tell you the precise animation video clip that made my son focus on static images. I can tell you the precise video clip that made my son call me "Papa." I can tell you the precise video clip that taught my son to say the word "No." I made all those video clips myself. There was no ABA around when I showed those video clips to my son. ABA did nothing to teach my son to read. Tell me, which ABA service teaches children to read at age 2? It was all me, alone. After my son was able to focus on static images, I was the one that drew all the cards with words and sentences, and drew pictures with speech bubbles for my son every night at bedtime, on a magnetic drawing board. (That was the way how I raised my daughter, earlier, too.) When my son wasn't lining up in school for gymnastics class, I was the one that made the video clip of "5 little frogs and 5 little cars" that made him line up in school. ABA was not there, at all. School teachers couldn't make my son line up, my wife couldn't make him line up. It was my video that made my son line up. Here is the video clip:



A few months ago, when my son was playing video game and my wife told him to take a bath, he threw himself at the floor, sobbing. For other parents they would need to struggle forever to solve this type of problem. I solved the problem in a matter of seconds, permanently. It has not happened again after I wrote up this article. Where were the therapists? Ha ha. Who among you all talk to your children, when they are happy, about your children's mad/sad moments, and through pictures, and then make the reverse connection and talk about their happy moments when they are mad/sad? Which therapist has a clue that that is necessary? Which ABA out there has a clue that that is the key?

http://www.eikonabridge.com/fun_and_facts.pdf

Quote:
I'll tell you what. It wasn't you who achieved that outcome, it was your son.


Of course it was my son. He was my teacher. But give my son to anyone else in the world, and you'll get sad stories and tears and whining. That much I am sure.

See, autism is a bit like math. You cannot understand autism by talking. A bit like you cannot understand the Pythagoras theorem for calculating the length of hypotenuse without drawing pictures and writing equations. There a limit on what can be achieved, verbally.

To me, autism is a solved problem. It's kind of boring, actually, after you understand it. As I always say, I have one and only one tool to deal with all issues of autism (which is modulation). I still look at autism, because it is like "Gram staining" in the study of bacterial organisms. Autism helps us understand how human brain works. It allows us to better understand artificial neural networks and machine learning. And that's the fascinating part of it.

As I have said, we already live inside the Technology Singularity. There is only one direction, and that is to move forward.

I apologize if some of you don't understand a word of what I am saying. It's a bit like that for many autistic people: we see things that other people can't see, we solve problems that other people can't solve. Like our pediatrician doctor, you get to scratch your head, and be wowed by our results. Ha!


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24 Sep 2017, 1:30 pm

Girls father wrote:
pddtwinmom wrote:
I don't have any experience with this medication. The only thing I'd say is from personal bias - 4 is awfully young for anti psychotics or really any of the mental illness meds. Some kids really have serious mental illness issues, but I don't consider autism to be in the same camp.

Your daughter still has time to develop. She's only 4, so needing strong attending skills and academic accomplishments are several years away. I'd wait to see how she develops. Our ASD babies develop much differently than NT children, and rapid gains in some areas happen almost overnight while others stagnate for years. I think it may be too soon to tell what your daughter will actually need, because she's essentially still a toddler (take her age and multiply it be 2/3, and you get the avg ASD age equivalent).

So, if it were me, I'd hold off. My twin boys are 6 now, both ASD, and what they're like today is worlds different from what they were like at 4. One still looks like he may have ADHD as a co-morbid, but we're watching and waiting there too. I did hold them both back one year to give them some time to mature, so even though they're 6, they just started kindergarten. And they're doing great, much better than I would have thought had you asked me for my prediction 2 years ago.

So, if it were me, I'd keep up with the therapy and re-evaluate once she's older. That's just me. Good luck papa!


She doesn't have many episodes of irritability and I know autism isn't a mental illness.
A pediatric neurologist we visited suggested she could take risperidone to diminish ADHD symptoms and improve learning (thats not the label purpose of the medication, but apparently it has been used for that purpose for a while).
I asked about aripiprazole use, because studies suggest it has lesser side effects than risperidone, on other hand, it's a newer medication and less well known.
To be very honest, I didn't want her to take any medication, but I'm worried.

In terms of waiting, I'm worried we'll waste potentially precious learning time. I'm trying to carefully decide what's best to do now. That's why we didn't start the meds yet.

ADHD is not a good enough reason to take something like aripirazole. I once take this medication under the label name of Abilify; under it I was less imaginative and was partly like a zombie (I was under weak dose), it's something you should not give to a child unless there is no alternative for a very serious problem.


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Girls father
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24 Sep 2017, 1:33 pm

Quote:
You have your point of view, I have mine.



That's certainly true. If it were you who helped your children develop, it's nice they had a sensitive father and your approach worked. It doesn't necessarily mean it can be taken as universal and it will work with everychildren, though.
By the way, since you wrote a book and is trying to spread your method of approach, do you know other cases that worked as well?
Another thing: By the age of 2 or 2,5 it's not so easy to label as mild or severely autistic, or low or high functioning, since as I said every autistic child follow their own developmental path. Also as you somehow pointed, intervention can make good results at that age.
I know an example of a boy that was diagnosed as "mildly autistic" by the age of 2 and later became fully nonverbal.

At least you admit some kind of intervention is needed.

Quote:
I apologize if some of you don't understand a word of what I am saying. It's a bit like that for many autistic people: we see things that other people can't see, we solve problems that other people can't solve. Like our pediatrician doctor, you get to scratch your head, and be wowed by our results. Ha!



Right after I posted my reply to you, I thought maybe I was making an uninformed judgment about you (at least partially), as you were making about me, but no, you are mostly here to brag and say you have it all figured out, but unfortunately other parents don't stand up to your "level". Congrats!



Last edited by Girls father on 24 Sep 2017, 1:57 pm, edited 1 time in total.

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24 Sep 2017, 1:36 pm

Quote:
ADHD is not a good enough reason to take something like aripirazole. I once take this medication under the label name of Abilify; under it I was less imaginative and was partly like a zombie (I was under weak dose), it's something you should not give to a child unless there is no alternative for a very serious problem.


Thank you for your reply. Which dose did you take? At which age?



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24 Sep 2017, 2:31 pm

In my opinion, antipsychotics are extremely dangerous, especially for kids with ADHD. They might keep them quiet and calm, but they're likely to reduce their ability to pay attention, not improve it, because they are dopamine antagonists.

Risperidone is the only one I have personal experience with; it turned me into a non-functional, borderline non-verbal/catatonic, suicidal zombie.

That said, they work for some people.

If you really think you want to try it, please be advised that for a lot of people, they are very sedating and have an adverse effect on cognitive function. Verbal or not, she won't be able to tell you what's happening.

Watch for her to become too compliant (as if she has little will of her own), lethargic, sleeping a great deal, losing enthusiasm for activities she enjoyed. Watch for a loss of cognitive function that will show up as losing skills she previously possessed.

PLEASE be hyper-alert for any sign that she's in pain, because she can't tell you. Aripiprazole isn't as notorious for it as risperidone and some others, but I will NEVER forget the experience of what the pamphlet described as "muscle stiffness." "Discomfort," my ASS. I've had an abscessed tooth and given birth four times without any kind of anesthetic. That "discomfort" and "muscle stiffness" was the most horrific pain of my life. I struggled to take myself to the bathroom because my legs didn't want to work and bearing weight on them was agonizing. Stopped wearing shoes that tied because it hurt too much to bend down to tie them. Quit washing my hair because I couldn't force myself to lift my arms above my shoulders against the pain. Had days when I couldn't get out of bed, all I could do was lay there and feel the tears run down the sides of my head.


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Girls father
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24 Sep 2017, 2:44 pm

BuyerBeware wrote:
In my opinion, antipsychotics are extremely dangerous, especially for kids with ADHD. They might keep them quiet and calm, but they're likely to reduce their ability to pay attention, not improve it, because they are dopamine antagonists.

Risperidone is the only one I have personal experience with; it turned me into a non-functional, borderline non-verbal/catatonic, suicidal zombie.

That said, they work for some people.

If you really think you want to try it, please be advised that for a lot of people, they are very sedating and have an adverse effect on cognitive function. Verbal or not, she won't be able to tell you what's happening.

Watch for her to become too compliant (as if she has little will of her own), lethargic, sleeping a great deal, losing enthusiasm for activities she enjoyed. Watch for a loss of cognitive function that will show up as losing skills she previously possessed.

PLEASE be hyper-alert for any sign that she's in pain, because she can't tell you. Aripiprazole isn't as notorious for it as risperidone and some others, but I will NEVER forget the experience of what the pamphlet described as "muscle stiffness." "Discomfort," my ASS. I've had an abscessed tooth and given birth four times without any kind of anesthetic. That "discomfort" and "muscle stiffness" was the most horrific pain of my life. I struggled to take myself to the bathroom because my legs didn't want to work and bearing weight on them was agonizing. Stopped wearing shoes that tied because it hurt too much to bend down to tie them. Quit washing my hair because I couldn't force myself to lift my arms above my shoulders against the pain. Had days when I couldn't get out of bed, all I could do was lay there and feel the tears run down the sides of my head.


Ritalin also presents serious side effects for people with autism, so I know in terms of meds, there isn't any great choice. Sorry to ask. How old were you and which dose did you take of risperidone?

By the way, I've been told by a mother of two autistic boys that one of them improved communication very much using risperidone in low dose plus ritalin in low dose (that was when he started talking), but he also experienced horrible side effects at start with ritalin. But I didn't oserve it first hand, and I'm not sure his progress was directly related to the meds.