The disability model weakens our status

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League_Girl
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10 Dec 2016, 6:22 pm

Tawaki wrote:
My husband agrees with you.

He said the worse part of being diagnosed, is now all his actions are judge based on his "disability". If he acts like a "grouch as*hole", before people would call him on it. Now, people ask if it's "a sensory issue", is there something wrong, or if he's overwhelmed. Aspies are human and can have jerk days. Not all behavior is driven by the disorder.

When my husband was first diagnosed, I treated all his crap behavior coming from his ASD. It was me who was making him grouchy, snark or moody.
I wasn't going the extra mile to smooth things out.

One day my husband full bore shoved me from behind to the floor. No explanation. I'm came up and ask are you okay? What is wrong? The previous month, I'm would have yelled, "You are such an as*hole." and shoved him threw the wall.

My husband burst into tears saying I'm was treating him like a special needs adult and not a partner. He felt totally emasculated by everyone. Everyone was nice. Everyone treated him with velvet gloves. He could act as horrible as he wanted, and everyone smiled and asked if he was okay, and what was wrong. People were beyond polite and attentive. He said it was absolutely horrible. He had went from an adult with problems to this less than human fragile flower. No one treated him as an equal with problems.

My husband did not go through the SPED system growing up. No one was nice or understanding or went the extra mile. He said he was glad to have that. People treated him as an adult with issues, not a person where every action was match up to his disorder and excused.

He told me he would much rather have a mental illness diagnosis. People with mental illness are people with problems. You can sort of "fix" mental illness. There are therapies and drugs, and most people do not define your essence as a human against your bipolar disorder (or whatever). You can be an asshat and still have OCD...bipolar disorder...anxiety. Autism zapped away any personhood he had as an adult.

I've heard people with TBI complain about the same thing.



I have been through that too. Everything becomes part of your disorder/illness when people find out. I try not to do it myself for others but it's hard because we don't know what to separate. My husband has done it to me and so have my ex's and one of them said to me "Would you rather have people think you are just an as*hole than blaming it on autism?"
Very good point he made. But you can still be both. As my mom says "anyone can be an as*hole."

But being with other aspies, I have never connected everything they do to their autism. To me everything they do all looks normal. But in a way seeing everything as normal someone does can also be damaging too because then you are treating them like a normal person than someone who is sick or has a disability and you end up unintentionally abusing them. I might have abused my first boyfriend because I didn't know he was sick and I just thought he was someone who was unmotivated to work and study to his driver's license and I treated him like he was *gasp* normal, someone who needed help in life to be independent and needed a little push to succeed in life and he came off as making excuses to not do things and being manipulative all because I didn't know he was sick. Then I was hurt and broke up with him. So I probably did abuse him but didn't know it because I had too high of expectations of him I would have for anyone. My mother told me I didn't know he was sick so it was all okay and I was like 'but you did try to warn me and I just thought you were doing a armchair diagnoses and you aren't even a psychiatrist and you can't diagnose someone in a few minutes." Plus I only knew the stereotypes of schizophrenia and my ex had none of that. he wasn't delusional, he wasn't hearing voices, he wasn't seeing things, he wasn't thinking people were spying on him and going after him, he wasn't violent and he wasn't getting in trouble with the law or doing any crazy things. My aunt did all this minus the people going after her part and spying on her but she has accused people of putting her in the hospital when they had nothing to do with it so close enough. My ex just came off as normal, someone who didn't want to work and wanted a mommy than a girlfriend and thought everything should be free and handed to everyone because he was a communist and he also came off as slow and acted like he had been doing drugs that wrecked his brain. But that is what happens when you don't see someone as their disability and see everything they do as normal. It's hard to know where to draw the line and how to balance it. When does something stop being part of a disability and it becomes just them being a jerk or just lazy or just self absorbed, etc? Even I have a hard time figuring that out for myself.


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10 Dec 2016, 9:07 pm

I agree with what has been said here:

Sweetleaf wrote:
I don't really understand...conditions like aspergers do cause significant difficulties, its not like all the problems come simply from it being viewed as a disability. I would think getting rid of the idea its any kind of medical condition would just cause people to expect us to just get over and ignore all the issues our condition causes...rather than adressing those difficulties and trying to find solutions or ways to allieviate some of it.

I mean sure it would be cool if having aspergers was all positive and didn't cause impairments, but that is not the case.


BirdInFlight wrote:
I too am having problems understanding the OP. The language reads like scientific thesis gobbledeegook rather than plain English.

I also agree with Sweetleaf calling the OP out on the premises I did manage to get the gist of. It DOES cause impairment and as I far as I see, actually there isn't enough allowance made for those impairments, rather than too much.

I grew up without anyone taking into consideration that my issues were real -- and yes, some severe sensory ones -- and not just "jerkism" and rather than be glad of that, it fcking scarred me as I was surrounded by a family who hated me.

How was THAT better for me than an enlightened situation where it was realized my difficulties were real and had a name and that a little accommodation would in fact help me thrive and improve and find ways to deal, rather than leaving me floundering?

I'm sorry but as a late diagnosed person who has struggled greatly and labored under the harshness and ridicule of others including my own blood kin, I speculate and believe quite strongly that "the disability model" applied to MY particular life actually would have opened me up to help, compassion and in fact thriving far better because I was understood, not vilified.


248RPA wrote:
I'm sorry if I didn't get the purpose of this topic, but —

While I would not call autism a disease (since autism itself doesn't usually cause health impariments), I think it is very much a disability/medical condition/disorder. It DOES cause impairments. It's not just a gene variation. Would a simple variation cause developmental delays? I have a disorder. I'm different. I take longer to do things. I'm weird and abnormal. And I'm proud of that.

Nevertheless, people with impairments should not have lower status than everyone else, nor have expectations lowered automatically.

Hope I didn't offend anybody.


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johnnyh
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10 Dec 2016, 9:55 pm

ASPartOfMe wrote:
The problem is that Autism is both a disability and a disadvantage of being a minority.

Another problem is the so-called comorbid's which most agree are disabling and should fit under the medical model. It is nice to say the difficulties from Aspergers is about society not understanding our differences and the true disabilities are not from Aspergers but the comorbid's but this will be perceived as a hypocritical run around. Maybe the DSM should make the most common comorbid's Asperger traits as they did with sensory sensitivities.

This leaves the ND advocacy organizations with a catch 22 situation. Go with the medical model and continue with stigmatization, low expectations and labeling for difficulties that are a result of being different, or go with the social model which leaves no logical reason for any benefits and accommodations beyond the normal given by individual people being kind and leaves Aspies vulnerable to the Trump era backlash against "identity politics" and the splitting of people into "winners" and "losers".


Those comorbities result directly from the neuropathology of autism, namely failure of autophagy, not enough difference in gene expression in the cortexes, and neurotransmitter differences. The first is a prime reason for many symptoms such as seizures if severe enough. Stop separating autism from seizures when they are real and result from autism itself.


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bethannny
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10 Dec 2016, 11:04 pm

Tawaki wrote:
My husband agrees with you.

He said the worse part of being diagnosed, is now all his actions are judge based on his "disability". If he acts like a "grouch as*hole", before people would call him on it. Now, people ask if it's "a sensory issue", is there something wrong, or if he's overwhelmed. Aspies are human and can have jerk days. Not all behavior is driven by the disorder.

When my husband was first diagnosed, I treated all his crap behavior coming from his ASD. It was me who was making him grouchy, snark or moody.
I wasn't going the extra mile to smooth things out.

One day my husband full bore shoved me from behind to the floor. No explanation. I'm came up and ask are you okay? What is wrong? The previous month, I'm would have yelled, "You are such an as*hole." and shoved him threw the wall.

My husband burst into tears saying I'm was treating him like a special needs adult and not a partner. He felt totally emasculated by everyone. Everyone was nice. Everyone treated him with velvet gloves. He could act as horrible as he wanted, and everyone smiled and asked if he was okay, and what was wrong. People were beyond polite and attentive. He said it was absolutely horrible. He had went from an adult with problems to this less than human fragile flower. No one treated him as an equal with problems.

My husband did not go through the SPED system growing up. No one was nice or understanding or went the extra mile. He said he was glad to have that. People treated him as an adult with issues, not a person where every action was match up to his disorder and excused.

He told me he would much rather have a mental illness diagnosis. People with mental illness are people with problems. You can sort of "fix" mental illness. There are therapies and drugs, and most people do not define your essence as a human against your bipolar disorder (or whatever). You can be an asshat and still have OCD...bipolar disorder...anxiety. Autism zapped away any personhood he had as an adult.

I've heard people with TBI complain about the same thing.


I understand how you husband felt (or feels). The only thing I can describe it as is feeling like an animal. I felt like I had my humanity removed nearly ten years ago when I got the Asperger's label.

Maybe, I would not have felt that way if they hadn't started treating me like a handicapped person. I was 17 at the time and actually removed from mainstream schooling and put in a designated "Asperger's" class.

The label can make you feel literally soulless. It can also do other things too like restrict your employment or travel options in some cases and add your name to a large Autism roster.



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10 Dec 2016, 11:11 pm

"add your name to a large Autism roster."

Is there really such a thing?



bethannny
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10 Dec 2016, 11:43 pm

feral botanist wrote:
"add your name to a large Autism roster."

Is there really such a thing?


Yes. But maybe not all countries have it. Where I live they do, do it. It's done for safety purposes in case the autistic person has contact with police during a crisis or they run away or something. Even people with mild Asperger's can and will be added.

This is done because we're assumed to be mentally incompetent no matter where we are the spectrum and we're presumed to have a freak out one day. Not a pleasant thing to be added to at all.



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10 Dec 2016, 11:51 pm

bethannny wrote:
feral botanist wrote:
"add your name to a large Autism roster."

Is there really such a thing?


Yes. But maybe not all countries have it. Where I live they do, do it. It's done for safety purposes in case the autistic person has contact with police during a crisis or they run away or something. Even people with mild Asperger's can and will be added.

This is done because we're assumed to be mentally incompetent no matter where we are the spectrum and we're presumed to have a freak out one day. Not a pleasant thing to be added to at all.


We don't have a list here, but I think the standard procedure in the states is to shoot first and put them in jail if they survive, so maybe your way is safer.



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11 Dec 2016, 12:02 am

I forgot something, some of us whether we like it or not or need it or not may even be forced to take psychiatric medication with an ASD disgnosis. Especially if we are under the age of consent.

I remember being prescribed all kinds of medications (abilify, risperidol(sic) etc.) only because I had the AS label.

I never took the Meds but there was an attempted court order in place at one time to ensure that I did. Of course this way later withdrawn.



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11 Dec 2016, 12:06 am

Yeah, it is different here, or at least my experience has been different than that.



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11 Dec 2016, 12:10 am

I have a solution to your problem for those who want to be a human than a label and want to be treated the same as they were before the diagnoses and not have everything become part of their disorder, don't tell people about your diagnoses.


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11 Dec 2016, 3:00 am

johnnyh wrote:
ASPartOfMe wrote:
The problem is that Autism is both a disability and a disadvantage of being a minority.

Another problem is the so-called comorbid's which most agree are disabling and should fit under the medical model. It is nice to say the difficulties from Aspergers is about society not understanding our differences and the true disabilities are not from Aspergers but the comorbid's but this will be perceived as a hypocritical run around. Maybe the DSM should make the most common comorbid's Asperger traits as they did with sensory sensitivities.

This leaves the ND advocacy organizations with a catch 22 situation. Go with the medical model and continue with stigmatization, low expectations and labeling for difficulties that are a result of being different, or go with the social model which leaves no logical reason for any benefits and accommodations beyond the normal given by individual people being kind and leaves Aspies vulnerable to the Trump era backlash against "identity politics" and the splitting of people into "winners" and "losers".




Those comorbities result directly from the neuropathology of autism, namely failure of autophagy, not enough difference in gene expression in the cortexes, and neurotransmitter differences. The first is a prime reason for many symptoms such as seizures if severe enough. Stop separating autism from seizures when they are real and result from autism itself.


The common Autism comorbids anxiety and depression are at least partially caused by the "different" or "minority" thinking of the autistics brains causing social conflicts. If you live in a society that is more analytical or views most eye contact as rude your autism will be less problematic than in America. If autism directly causes seizures then seizures not be labeled a comorbid but an Autistic trait.

I personally find the concept of comorbidity as it relates to Autism confusing, fuzzy, and inconsistently applied.


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11 Dec 2016, 3:12 am

Despite popular belief, The Neurodiversity movement is entirely based on the social model of disability.
Medical Model:
Image
Social Model: Image


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11 Dec 2016, 8:51 am

ASPartOfMe wrote:
The problem is that Autism is both a disability and a disadvantage of being a minority.

Another problem is the so-called comorbid's which most agree are disabling and should fit under the medical model. It is nice to say the difficulties from Aspergers is about society not understanding our differences and the true disabilities are not from Aspergers but the comorbid's but this will be perceived as a hypocritical run around. Maybe the DSM should make the most common comorbid's Asperger traits as they did with sensory sensitivities.

This leaves the ND advocacy organizations with a catch 22 situation. Go with the medical model and continue with stigmatization, low expectations and labeling for difficulties that are a result of being different, or go with the social model which leaves no logical reason for any benefits and accommodations beyond the normal given by individual people being kind and leaves Aspies vulnerable to the Trump era backlash against "identity politics" and the splitting of people into "winners" and "losers".


I think we should leave the American politics out of it, it clouds the issue. Groups get what they advocate for, not what people think they should give them.

From a conceptional perspective, I think relying on the DSM for anything relating to Neurodiversity is unwise. The APA took years to reject the concept of Neurodiversity when they pushed out DSM-5, it's not as if they just missed the idea. I'm not throwing out the DSM-5 on everything, through I would prefer a different guide be used by the Governments, Insurance Companies, Courts, and Schools.

For the accusations of hypocrisy, yes, that's an issue given our weak group identity. It really depends on what the co-morbid are, and if they really are "co-morbid", or simply a result of "Neurodiverse" gene expression. I personally believe the well above average rates of social anxiety and depression are the results of a society that is unwilling to accept neurological processing and communication differences, so it's not a co-morbid, it's a result of the unwillingness to accept biological differences.

248RPA wrote:
.......
While I would not call autism a disease (since autism itself doesn't usually cause health impariments), I think it is very much a disability/medical condition/disorder. It DOES cause impairments. It's not just a gene variation. Would a simple variation cause developmental delays? I have a disorder. I'm different. I take longer to do things. I'm weird and abnormal. And I'm proud of that.
.......


You didn't offend me. It's highly unlikely to be a "simple (gene) variation", seeing as how over a decade of genetic testing just magically hasn't managed to find a set of genes that aren't also in many "high performing people". One researcher's false positive conclusion is another researcher's social status conclusion.



bethannny wrote:
feral botanist wrote:
"add your name to a large Autism roster."

Is there really such a thing?


Yes. But maybe not all countries have it. Where I live they do, do it. It's done for safety purposes in case the autistic person has contact with police during a crisis or they run away or something. Even people with mild Asperger's can and will be added.

This is done because we're assumed to be mentally incompetent no matter where we are the spectrum and we're presumed to have a freak out one day. Not a pleasant thing to be added to at all.


An unsurprising result of having low perceived group social status. How many other groups would find this acceptable?

ASPartOfMe wrote:

........

The common Autism comorbids anxiety and depression are at least partially caused by the "different" or "minority" thinking of the autistics brains causing social conflicts. If you live in a society that is more analytical or views most eye contact as rude your autism will be less problematic than in America. If autism directly causes seizures then seizures not be labeled a comorbid but an Autistic trait.

I personally find the concept of comorbidity as it relates to Autism confusing, fuzzy, and inconsistently applied.


Inconsistent is being kind. Not to beat a proverbial dead horse, but again, our social status determines how we're treated. Accepting this disability model means that we accept that the DSM-5 is somehow controlling, no matter how "confusing, fuzzy, and inconsistently applied" it is.

Pieplup wrote:
[color=#00b2ff] Despite popular belief, The Neurodiversity movement is entirely based on the social model of disability.
......


The Neurodiversity movement, at least the one derived from Sinclair, yes, in part is based on the social model of disability. Some haven't quite gotten over some of the basic assumptions of the "medical model", particularly on the diagnosis side.


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11 Dec 2016, 9:24 am

I don't think it is a simplistic either or scenario ie medical vs social model. Ideally we need a model that acknowledges the impairments but also seeks solutions/ societal support for the barriers created by those impairments. It also needs to acknowledge the positives that may arise from ASD.

I would advocate a hybrid model.


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11 Dec 2016, 9:43 am

@Sweetleaf

I can't figure out how to cut and quote on the mobile, so I hope I can answer a few things.

My husband's diagnosis wasn't because he knew he had Autism and so did everyone else. He got it as a last ditch effort to save his job and his marriage.

I didn't know what was wrong with him. Seeing a grown man beat his head against the wall during a melt down is shocking when you have no clue why he is doing it. I thought he was on drugs.

Why we treated him differently...

His therapist came back with a three pages listing "all his issues".

He didn't like being hugged or kissed on. Hated stores. Hated people eating around him. Hated spur of the moment requests to go out. Hated phone calls. Hated texts. Big lists of foods he hated. Hated people talking to him. That's a cliff note version of the list.

So we took those three pages as gospel truth. So the intimacy stopped. The friends stopped dropping by uninvited. No more calls or texts from anyone. Stopped eating around him. Cooked everything that was bland, mushy and white.

I guess it's sort of be careful what you wish for. We love him, so why continue to do things that supposedly made his life a living hell? Everything he listed was a supposed trigger related to autism.

Everyone was too nice. Too understanding. Too much let's make this all good so we don't cause you uncomfort. What to eat Raman for weeks? Not a problem. You let us know when and if you want to go out. His executive functioning skills are so bad, it would be impossible to actually plan that.

We stopped treating him as adult with fixable problems. We treated him as someone who has an inflexible disability, with no real ability to change.

I'm pretty hot headed. A shove from behind before diagnosis, my reaction would be not be pretty. When he shoved me 6 months after his diagnosis, that was to see how much I changed. I reacted like a 5 year old shoved me (because of his diagnosis) instead of a man.

So I can see where the disability model falls short for some people. Everything you do can be explained away because you have this disability, which is probably not true. It also makes it easier for people discriminated. Like all Aspies hate team work. All Aspies hate stores. All Aspies hate changes to their routines.That's not sh*t behavior, just a sensory issue. Those theories might work well with a child, it doesn't translate so well for an adult.



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11 Dec 2016, 12:54 pm

Tawaki wrote:
@Sweetleaf

I can't figure out how to cut and quote on the mobile, so I hope I can answer a few things.

My husband's diagnosis wasn't because he knew he had Autism and so did everyone else. He got it as a last ditch effort to save his job and his marriage.

I didn't know what was wrong with him. Seeing a grown man beat his head against the wall during a melt down is shocking when you have no clue why he is doing it. I thought he was on drugs.

Why we treated him differently...

His therapist came back with a three pages listing "all his issues".

He didn't like being hugged or kissed on. Hated stores. Hated people eating around him. Hated spur of the moment requests to go out. Hated phone calls. Hated texts. Big lists of foods he hated. Hated people talking to him. That's a cliff note version of the list.

So we took those three pages as gospel truth. So the intimacy stopped. The friends stopped dropping by uninvited. No more calls or texts from anyone. Stopped eating around him. Cooked everything that was bland, mushy and white.

I guess it's sort of be careful what you wish for. We love him, so why continue to do things that supposedly made his life a living hell? Everything he listed was a supposed trigger related to autism.

Everyone was too nice. Too understanding. Too much let's make this all good so we don't cause you uncomfort. What to eat Raman for weeks? Not a problem. You let us know when and if you want to go out. His executive functioning skills are so bad, it would be impossible to actually plan that.

We stopped treating him as adult with fixable problems. We treated him as someone who has an inflexible disability, with no real ability to change.

I'm pretty hot headed. A shove from behind before diagnosis, my reaction would be not be pretty. When he shoved me 6 months after his diagnosis, that was to see how much I changed. I reacted like a 5 year old shoved me (because of his diagnosis) instead of a man.

So I can see where the disability model falls short for some people. Everything you do can be explained away because you have this disability, which is probably not true. It also makes it easier for people discriminated. Like all Aspies hate team work. All Aspies hate stores. All Aspies hate changes to their routines.That's not sh*t behavior, just a sensory issue. Those theories might work well with a child, it doesn't translate so well for an adult.



So wait, your husband hates being accommodated and understood and he would rather be treated like he is a jerk?


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