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eikonabridge
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12 Nov 2017, 10:43 am

How ‘Autism Warrior Parents’ Harm Autistic Kids
by Shannon Des Roches Rosa
https://theestablishment.co/how-autism-warrior-parents-harm-autistic-kids-6700b8bf6677

Somehow I don't see this article being mentioned here on WrongPlanet. To me, it's very spot on.

I have yet to see one single success story from an AWP. On the other hand, the truly successful families that I have met are just cruising, no drama. One would think that the more parents fight for their children, the better the children will turn out. But that is not the case, in practice. Many of these warrior parents know virtually all the resources out there, they've read every single book on autism, know all the lawyers/advocates to fight the school districts, know all the fun activities out there designed for autistic children and their price discounts, attend all the conferences. Some even know all the drugs, supplements, diet strategies, unorthodox treatments. Yet, their children don't do well.

The thing is, the starting point of the warrior parents is that their children are defective. They already stand on the opposite side of their children, from the very beginning. They don't treat their children as equal-rights human beings. Everything of course goes downhills from there.


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BuyerBeware
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13 Nov 2017, 2:00 pm

What kids thrive on, generally, is acceptance, inclusion, and teaching.

Making a "war" of trying to "fix" them just takes time, focus, energy, presence, and attention away from the kids.

There is a great line from the South Park Movie that made an impression on me; it has informed a fair amount of my parenting. "I didn't want a crusader (hero, warrior, something along those lines). I just wanted a mom."

It would be great if we could remake society to be more tolerant and accepting of autism. Good luck.

Lacking that, it would be great if we could make autistics better conformed to what society will tolerate and accept. Also probably not happening, however much we wish it.

What we CAN do, is accept the kids we are given, and work with what we have. That's what's available.


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18 Dec 2017, 12:34 pm

A highly motivated warrior parent, must be exhausting to be around. :(



kraftiekortie
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18 Dec 2017, 12:37 pm

I don't like "warrior parent" types in general.

They tend to not like people other than those in their family---and sometimes even dislike their spouses. They belittle the spouse because the "warrior parent" feels like they're not "doing enough."

My mother was probably a "warrior parent" type---which probably benefited me, but didn't benefit my father too much.



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20 Dec 2017, 8:43 pm

Sometimes circumstances force you to be a ‘warrior’- for instance one parent not agreeing to transfer services to a better therapy program, due to denial ,

The school strapping child in chair for hours every DAY because they make excuses ‘he doesn’t seem able to concentrate’ etc. I have dealt with this and much more.
Thing is perhaps the Parent is a watrior from the beginning not because of the Child but because he has such high needs that others are refusing to see.
For me success is a day of him being happy and fulfilled having been treated as a kid, given attention and activities he enjoys—

not a lump to put in a corner as if he has no thoughts or curiousity about the world. I saw the school do that until recently this school yr
Lazy and made excuses rarely sent back work (eg paintings) till I got on their case about it

Last year he had better teachers who put their all into it and he thrived! Nobody needs to go to ‘war’ when other adults also take initiative and treat the child as a CHILD not a piece of trash to bide its time till someone takes ‘it’ out (ie to home)
which is the mentality i feel his current teachers had till recently

I also encountered 1 abusive nurse (thank God she was fired by her company) and 1 abusive ABA therapist (the latter used to frighten him and spoke of him as ‘too low functioning to learn’ and used to grab him n yell at him .. he would have seizures n bite his hands when she came, the change was dramatic and she needed to go. )



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21 Dec 2017, 7:04 am

blooiejagwa wrote:
Sometimes circumstances force you to be a ‘warrior’- for instance one parent not agreeing to transfer services to a better therapy program, due to denial ,

The school strapping child in chair for hours every DAY because they make excuses ‘he doesn’t seem able to concentrate’ etc. I have dealt with this and much more.
Thing is perhaps the Parent is a watrior from the beginning not because of the Child but because he has such high needs that others are refusing to see.
For me success is a day of him being happy and fulfilled having been treated as a kid, given attention and activities he enjoys—

not a lump to put in a corner as if he has no thoughts or curiousity about the world. I saw the school do that until recently this school yr
Lazy and made excuses rarely sent back work (eg paintings) till I got on their case about it

Last year he had better teachers who put their all into it and he thrived! Nobody needs to go to ‘war’ when other adults also take initiative and treat the child as a CHILD not a piece of trash to bide its time till someone takes ‘it’ out (ie to home)
which is the mentality i feel his current teachers had till recently

I also encountered 1 abusive nurse (thank God she was fired by her company) and 1 abusive ABA therapist (the latter used to frighten him and spoke of him as ‘too low functioning to learn’ and used to grab him n yell at him .. he would have seizures n bite his hands when she came, the change was dramatic and she needed to go. )


Hello blooiejagwa, welcome to WP

I believe the OP meant Autism Warrior Parents as parents fighting Autism not those fighting the system. The article really is worth reading, and from your post, I think you will find a lot in it to agree with and possibly some lines of interest.
It sounds as if your son is the better for having you fighting for him.



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21 Dec 2017, 9:17 am

Some of the issue is with the use of the word "warrior". There is a pejorative usage commonly used (in the US, anyway) by antagonistic persons of one political side of the spectrum to describe activists on the other side of the spectrum which they oppose. The usage by the OP and the cited article usage mirrors the same pejorative but applies it to people who are Curebie Activists (for equal lack of a better phrase.)

The problem is that the use of the word "warrior" as used in other contexts would apply also, ironically enough, to neurodiversity activists like the one who who wrote the article, and that as blooiejagwa stated, the concept can be confused with people who have to fight because their children would not be treated decently if they did not.

There is a big difference between using some of your time to research and act upon your options in dealing with the obstacles that prevent your child from being treated like human beings and you, yourself not treating your children like humans, so you can aggrandize yourself as some kind of fake martyr. The original post really didn't differentiate the two, so I can see why blooiejagwa would take umbrage.



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21 Dec 2017, 9:48 am

blooiejagwa wrote:
Sometimes circumstances force you to be a ‘warrior’- for instance one parent not agreeing to transfer services to a better therapy program, due to denial ,

The school strapping child in chair for hours every DAY because they make excuses ‘he doesn’t seem able to concentrate’ etc. I have dealt with this and much more.
Thing is perhaps the Parent is a watrior from the beginning not because of the Child but because he has such high needs that others are refusing to see.
For me success is a day of him being happy and fulfilled having been treated as a kid, given attention and activities he enjoys—

not a lump to put in a corner as if he has no thoughts or curiousity about the world. I saw the school do that until recently this school yr
Lazy and made excuses rarely sent back work (eg paintings) till I got on their case about it

Last year he had better teachers who put their all into it and he thrived! Nobody needs to go to ‘war’ when other adults also take initiative and treat the child as a CHILD not a piece of trash to bide its time till someone takes ‘it’ out (ie to home)
which is the mentality i feel his current teachers had till recently

I also encountered 1 abusive nurse (thank God she was fired by her company) and 1 abusive ABA therapist (the latter used to frighten him and spoke of him as ‘too low functioning to learn’ and used to grab him n yell at him .. he would have seizures n bite his hands when she came, the change was dramatic and she needed to go. )

You don't seem to fit to what the author defines as Autism Warrior Parent:
Quote:
Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired.
By this definition, you are not AWP.
It is a whole different story than what I would call Autism Advocate Parent - explaining the child's ways to the outer world and defending them against unfair treatment.


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blooiejagwa
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21 Dec 2017, 9:52 am

magz wrote:
blooiejagwa wrote:
Sometimes circumstances force you to be a ‘warrior’- for instance one parent not agreeing to transfer services to a better therapy program, due to denial ,

The school strapping child in chair for hours every DAY because they make excuses ‘he doesn’t seem able to concentrate’ etc. I have dealt with this and much more.
Thing is perhaps the Parent is a watrior from the beginning not because of the Child but because he has such high needs that others are refusing to see.
For me success is a day of him being happy and fulfilled having been treated as a kid, given attention and activities he enjoys—

not a lump to put in a corner as if he has no thoughts or curiousity about the world. I saw the school do that until recently this school yr
Lazy and made excuses rarely sent back work (eg paintings) till I got on their case about it

Last year he had better teachers who put their all into it and he thrived! Nobody needs to go to ‘war’ when other adults also take initiative and treat the child as a CHILD not a piece of trash to bide its time till someone takes ‘it’ out (ie to home)
which is the mentality i feel his current teachers had till recently

I also encountered 1 abusive nurse (thank God she was fired by her company) and 1 abusive ABA therapist (the latter used to frighten him and spoke of him as ‘too low functioning to learn’ and used to grab him n yell at him .. he would have seizures n bite his hands when she came, the change was dramatic and she needed to go. )

You don't seem to fit to what the author defines as Autism Warrior Parent:
Quote:
Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired.
By this definition, you are not AWP.

Sure I understand that. However the two can get conflated. Outsiders will see someone researching on their own and striving for more services, integration and even beneficial nutrition, as ‘fighting autism’ or ‘curing autism’- rather than seeing it as necessary support for a child who needs more. So they treat you as a ‘crazy’ who is out to ‘fix’ their child.



magz
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21 Dec 2017, 9:54 am

You replied before I edited my post to add an idea of Autism Advocate Parents :)


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blooiejagwa
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21 Dec 2017, 10:05 am

Oh gotcha. Just wanted to add another narrative into an interesting discussion. Btw I love your profile picture.



magz
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21 Dec 2017, 10:33 am

Thanks :) It's me on Drachenwand in Austria, photo by my spouse :)

Well, to me the difference is quite obvious: weather you treat one as a person you care for or as a disability you fight against.
It's not only about autistic kids, I think it relates to any disability, possibly even any way the child would not be what their parent wishes them to be.


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22 Dec 2017, 2:36 pm

magz wrote:
Thanks :) It's me on Drachenwand in Austria, photo by my spouse :)

Well, to me the difference is quite obvious: weather you treat one as a person you care for or as a disability you fight against.
It's not only about autistic kids, I think it relates to any disability, possibly even any way the child would not be what their parent wishes them to be.

Yes but people are paranoid about intentions . They also project what they might be feeling

The worst part about advocating for your kid when you have Aspergers problems with communicating—- it is hard to get your point across properly or understand the subtle stuff. So i go into overkill by being overly nice and gracious

That doesn’t help either as they see it as too vague and easy to ignore but I don’t know whether they are being defensive or I was rude at some point. I don’t know how to strike a balance yet



magz
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22 Dec 2017, 3:07 pm

blooiejagwa wrote:
Yes but people are paranoid about intentions . They also project what they might be feeling

The worst part about advocating for your kid when you have Aspergers problems with communicating—- it is hard to get your point across properly or understand the subtle stuff. So i go into overkill by being overly nice and gracious

That doesn’t help either as they see it as too vague and easy to ignore but I don’t know whether they are being defensive or I was rude at some point. I don’t know how to strike a balance yet

I see your point. It is hard even to advocate for yourself with a typical for Aspie women history of faking and being gaslighted. Let alone advocating for a level 3 child.
Were you actually accused of being AWP outside this forum?


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22 Dec 2017, 6:25 pm

Not openly called that but there was a demeanour and attitude that even I noticed. My requests and explanations were ignored —when my Ex H and the therapists made the same requests as I had been making—it was immediately given (the services needed).