Help Wanted, Autist
December 1, 2012 7:06 PM Subscribe
I've always believed one of the ills of our society was it's narrow definition of "useful" in terms of people and their skill, talents, and differences. For much of the past we've labeled people as "disabled" rather than have roles for those of rarer temperment or mind-sets. I love that I'm seeing more of a discussion about the roles of our various types in my lifetime. Someday, there will be roles for someone like me.
posted by _paegan_ at 8:27 PM on December 1, 2012 [2 favorites]
posted by _paegan_ at 8:27 PM on December 1, 2012 [2 favorites]
I've always believed one of the ills of our society was it's narrow definition of "useful" in terms of people and their skill, talents, and differences.
Something I read (perhaps here on Metafilter?) really stuck with me: In ye olde days before the industrial revolution, there were useful roles for all but the most severely disabled. You might be "slow" or "different" or have mobility issues, but there were almost certainly tasks to which you could contribute, like carrying water or keeping the fire burning in the oven.
We've constructed our modern society in such a way that if you don't function at a normative level -- able to drive, handle a bank account, perform in a highly structured work environment, handle complex interactions with strangers -- you pretty much don't have a role at all. (Among other things, it means that the elderly get categorized as disabled as well, interestingly.)
That's obviously bad for the people involved, but I'd argue it's also bad for those of us who do function well in that normative sense. We're all poorer for it.
So while I don't know if this particular approach will work, I like the idea of reframing "disability" around abilities instead as a general idea.
posted by Forktine at 8:57 PM on December 1, 2012 [44 favorites]
A little bit mechanical turk, a little bit of The Focused from A Deepness In The Sky.
posted by sourwookie at 8:57 PM on December 1, 2012 [3 favorites]
posted by sourwookie at 8:57 PM on December 1, 2012 [3 favorites]
Dr. Sonne's work is extremely profound but what also must be included is the major contribution of the state of Denmark to find workable solutions for its developmentally disabled population and the rewards for companies willing to do the large amount of work necessary to maintain the employment of these individuals. What is exciting about Dr. Sonne's work is the opportunity to place disabled adults in work that is not necessarily low-technology, the major employment area for them because of the natural disposition of employers to equate a disability with a lack of ability and therefor a lack of constitution required for high-value work.
I was involved short-term in the creation of a day center in Oregon for disabled adults wishing to lead independent lives. The major factor, in my opinion, is that most carers saw the center as a leisure activity rather than a working activity. That challenge is central to the major issue of how to place adults with special needs because carers (most often not parents except for a handful of cases) are looking for ways to occupy the attention-required population in care. From my place as a development director, I was akin to the perspective of donors who were looking for disabled adults to make a positive impression that would lead to the independent life that many imagine these in-care individuals are capable of leading. Still, these people require a modicum of care. The care changes thus create budget changes, housing changes, work change, life changing, etc. There is no cookie cutter solution to sate all interests simultaneously. The needs for someone with Prader-Willi syndrome for example, are massively different from someone with advanced MS or profound autism. Taking into account that developmental disabilities illustrate a spectrum as large as every genetic variant makes arguing for a solution like Dr. Sonne's thesis unsustainable.
I am happy to see that a handful of people in Denmark have been accommodated toward leading independent lives and want to see if this process will create more ad hoc accommodation without exploitation. That will be years.
posted by parmanparman at 9:07 PM on December 1, 2012 [5 favorites]
I was involved short-term in the creation of a day center in Oregon for disabled adults wishing to lead independent lives. The major factor, in my opinion, is that most carers saw the center as a leisure activity rather than a working activity. That challenge is central to the major issue of how to place adults with special needs because carers (most often not parents except for a handful of cases) are looking for ways to occupy the attention-required population in care. From my place as a development director, I was akin to the perspective of donors who were looking for disabled adults to make a positive impression that would lead to the independent life that many imagine these in-care individuals are capable of leading. Still, these people require a modicum of care. The care changes thus create budget changes, housing changes, work change, life changing, etc. There is no cookie cutter solution to sate all interests simultaneously. The needs for someone with Prader-Willi syndrome for example, are massively different from someone with advanced MS or profound autism. Taking into account that developmental disabilities illustrate a spectrum as large as every genetic variant makes arguing for a solution like Dr. Sonne's thesis unsustainable.
I am happy to see that a handful of people in Denmark have been accommodated toward leading independent lives and want to see if this process will create more ad hoc accommodation without exploitation. That will be years.
posted by parmanparman at 9:07 PM on December 1, 2012 [5 favorites]
I think this is an excellent idea and not much different than making accommodations for the disabled. Differently-abled people can work and make a valuable contribution and have self sufficiency that benefits themselves and the companies that employ them.
posted by shoesietart at 9:24 PM on December 1, 2012
posted by shoesietart at 9:24 PM on December 1, 2012
Are there concerned that autistic workers could be abused or taken advantage of in ways that "normal" workers could not? Not paid a fair wage, for example. Or allowed to work in unsafe conditions?
posted by maryr at 10:12 PM on December 1, 2012
posted by maryr at 10:12 PM on December 1, 2012
Maryr, that's probably going to be more of a problem in the USA than it was in Denmark, but if they retain their present "consultancy" model then their clients will at least have someone looking out for their interests.
posted by Joe in Australia at 10:21 PM on December 1, 2012 [2 favorites]
posted by Joe in Australia at 10:21 PM on December 1, 2012 [2 favorites]
Are there concerned that autistic workers could be abused or taken advantage of in ways that "normal" workers could not? Not paid a fair wage, for example. Or allowed to work in unsafe conditions?
Even mildly autistic folks have it rough. I'm not autistic, but with my bizarre hobbies and fixations, I tend to attract friends and coworkers all over the spectrum. Of those with office jobs, I've seen a frustratingly large number fail to earn what they're worth, because they don't play politics or self-advocate; their neurotypical bosses don't reach out to help, and often don't "get" them at all. Even if they're not being put in harm's way, they're still getting a raw deal.
I think a much more common understanding of how autistic people function (and don't function) is the only way they'll avoid being taken advantage of in traditional workplaces.
(Maybe big tech companies / startups handle this better?)
posted by jake at 10:58 PM on December 1, 2012 [1 favorite]
Even mildly autistic folks have it rough. I'm not autistic, but with my bizarre hobbies and fixations, I tend to attract friends and coworkers all over the spectrum. Of those with office jobs, I've seen a frustratingly large number fail to earn what they're worth, because they don't play politics or self-advocate; their neurotypical bosses don't reach out to help, and often don't "get" them at all. Even if they're not being put in harm's way, they're still getting a raw deal.
I think a much more common understanding of how autistic people function (and don't function) is the only way they'll avoid being taken advantage of in traditional workplaces.
(Maybe big tech companies / startups handle this better?)
posted by jake at 10:58 PM on December 1, 2012 [1 favorite]
"Something I read (perhaps here on Metafilter?) really stuck with me: In ye olde days before the industrial revolution, there were useful roles for all but the most severely disabled. You might be "slow" or "different" or have mobility issues, but there were almost certainly tasks to which you could contribute, like carrying water or keeping the fire burning in the oven."
This is an awfully rosy view of the past that I don't think hold up to facts and a few moments thought.
In Greece and ancient Rome a child was virtually their father's chattel, in Roman law, the Patria Protestas granted the father the right to dispose of his offspring as he saw fit. The Twelve Tables of Roman Law held that "Deformed infants shall be killed" (De Legibus, 3.8). Of course, deformed was broadly construed and often meant no more than the baby appeared "weakly." The Twelve Tables also explicitly permitted a father to expose any female infant. Cicero defended infanticide by referring to the Twelve Tables. Plato and Aristotle recommended infanticide as legitimate state policy. Cornelius Tacitus went so far as to condemn the Jews for their opposition to infanticide. In Histories 5.5 He stated that the Jewish view that "it was a deadly sin to kill an unwanted child" was just another of the many "sinister and revolting practices" of the Jews. Even Seneca, who was famous for his relatively high moral standards, stated, "we drown children at birth who are weakly and abnormal" at the beginning of his work De Ira. Hell, infanticide was a casually considered phenomenon, check out this letter that we have, "Know that I am still in Alexandria.... I ask and beg you to take good care of our baby son, and as soon as I received payment I shall send it up to you. If you are delivered (before I come home), if it is a boy keep it, if a girl, discard it." Naphtali Lewis, Life in Egypt Under Roman Rule, page 54. This all changed quite suddenly with the rise of Christianity.
While an opposition to abortion has never been really Christian, not un-Christian but not really Christian either*, an opposition to infanticide at least was, and also goes to the heart of a lot of what Christianity has always been. We just might not see it today because of how ubiquitous the change is. There was significant culture clash between the earliest Christians and the Greco/Romans they were surrounded by, and infaticide was one of the biggest sticking points that Christians were most aggressive about. The Didache (90 -110 CE) commanded "You shall not commit infanticide." The Epistle of Barnabas (130 CE), also explicitly condemns infanticide. The core difference was that while the Greeks and Romans defined personhood by the things a person was able to do, early Christians defined personhood by what one was, namely a child of God. The idea of the universal sanctity and equivalent value of life was a truly radical concept at the time, and inherently Judeo-Christian. With personhood being such a fluid thing, both vulnerable people and children were less people than secure adults were. In essence, without the modern absolute understanding, how much of a person you were was precisely correlated with how much you could convince/force other to recognize your personhood. The fundamental paradigm shift can, I think be seen even more clearly in child prostitution. The Romans and Greeks didn't talk about child prostitution much, it was presumably not seen as an important moral issue like the duty to murder deformed or inconveniently female children was, but there is ample evidence of it and early Christians could not shut up about the practice. There were pre-pubescent sex workers of both genders found at Pompeii and surviving written records of military child slaves being sold to pimps and brothels. This is from the First Apology of Justin Martyr (150-155 CE), "But as for us, we have been taught that to expose newly-born children is the part of wicked men; and this we have been taught lest we should do any one an injury, and lest we should sin against God, first, because we see that almost all so exposed (not only the girls, but also the males) are brought up to prostitution." Children couldn't enforce their personhood and so they wern't persons unless their fathers enforced their personhood for them, similarly if their fathers declared them non-persons, that is what they were. Abandoned children were still non-people, or at least negligibly people, and thus morally exploitable. This was of course a terrible place to be born disabled, and largely the norm for ancient societies. If you had the misfortune to be born with a club foot and the further misfortune to be saved from exposure to the elements, it would not be into a happy place full of accommodation or security.
In the western world between christinaization and the industrial revolution, disabled people continue to be largely absent from the historical record however it would be a mistake to say that things must then have just been peachy. While people in the Medieval period still had access to the writings of Galen with his proto-scientific theories of impairment, they often understood disability through various crude biblical lenses as either the result of Satan, witchcraft, evil spirits or the manifestation of God's disapproval leading to death - or more rarely as somehow reflecting the torments of Christ leading to security in a religious position. Most of the social history we have of disability in the middle ages comes from accounts of healings at the shrines of saints most of which state that there were no occupations the folks with cured impairments could hold. While a dramatic improvement on what existed before, you can imagine how, where even today raising funding for lung cancer is incredibly difficult due to perceptions of complicity by the public, disabled folks might have a difficult time if they were thought to be impaired as a result of their own sin.
With the enlightenment and industrialization came the medical model for disability as a replacement for the religious one. This was again a vast improvement even with the social upheaval that the industrial revolution brought; a progression from bare genocide to blame to labels. People with physical differences from the ideal of youth, maleness and strength became deviants from a perceived norm in need of control to forcibly adapt them to the 'modern' world. As labor became commodified and human value began to rest on profit, an inability to work became simply valued as a negative commodity, a thing to be fixed mechanically, institutionalized, or ignored. Religion and politics were stripped from notions of disability as adapting the continuing 'tragedy' and 'burden' of disability in the context of social darwinism became professionalized. What we are now beginning to see with the ADA, UN Convention on the Rights of the Disabled, and disability rights groups is so much better - a Rights-Based model for understanding disability. It is a goal of adapting society to the people within it rather than the other way around. It is a shifting of the focus from dependence to an independence that doesn't really have many meaningful parallels in human history.
posted by Blasdelb at 4:22 AM on December 2, 2012 [55 favorites]
This is an awfully rosy view of the past that I don't think hold up to facts and a few moments thought.
In Greece and ancient Rome a child was virtually their father's chattel, in Roman law, the Patria Protestas granted the father the right to dispose of his offspring as he saw fit. The Twelve Tables of Roman Law held that "Deformed infants shall be killed" (De Legibus, 3.8). Of course, deformed was broadly construed and often meant no more than the baby appeared "weakly." The Twelve Tables also explicitly permitted a father to expose any female infant. Cicero defended infanticide by referring to the Twelve Tables. Plato and Aristotle recommended infanticide as legitimate state policy. Cornelius Tacitus went so far as to condemn the Jews for their opposition to infanticide. In Histories 5.5 He stated that the Jewish view that "it was a deadly sin to kill an unwanted child" was just another of the many "sinister and revolting practices" of the Jews. Even Seneca, who was famous for his relatively high moral standards, stated, "we drown children at birth who are weakly and abnormal" at the beginning of his work De Ira. Hell, infanticide was a casually considered phenomenon, check out this letter that we have, "Know that I am still in Alexandria.... I ask and beg you to take good care of our baby son, and as soon as I received payment I shall send it up to you. If you are delivered (before I come home), if it is a boy keep it, if a girl, discard it." Naphtali Lewis, Life in Egypt Under Roman Rule, page 54. This all changed quite suddenly with the rise of Christianity.
While an opposition to abortion has never been really Christian, not un-Christian but not really Christian either*, an opposition to infanticide at least was, and also goes to the heart of a lot of what Christianity has always been. We just might not see it today because of how ubiquitous the change is. There was significant culture clash between the earliest Christians and the Greco/Romans they were surrounded by, and infaticide was one of the biggest sticking points that Christians were most aggressive about. The Didache (90 -110 CE) commanded "You shall not commit infanticide." The Epistle of Barnabas (130 CE), also explicitly condemns infanticide. The core difference was that while the Greeks and Romans defined personhood by the things a person was able to do, early Christians defined personhood by what one was, namely a child of God. The idea of the universal sanctity and equivalent value of life was a truly radical concept at the time, and inherently Judeo-Christian. With personhood being such a fluid thing, both vulnerable people and children were less people than secure adults were. In essence, without the modern absolute understanding, how much of a person you were was precisely correlated with how much you could convince/force other to recognize your personhood. The fundamental paradigm shift can, I think be seen even more clearly in child prostitution. The Romans and Greeks didn't talk about child prostitution much, it was presumably not seen as an important moral issue like the duty to murder deformed or inconveniently female children was, but there is ample evidence of it and early Christians could not shut up about the practice. There were pre-pubescent sex workers of both genders found at Pompeii and surviving written records of military child slaves being sold to pimps and brothels. This is from the First Apology of Justin Martyr (150-155 CE), "But as for us, we have been taught that to expose newly-born children is the part of wicked men; and this we have been taught lest we should do any one an injury, and lest we should sin against God, first, because we see that almost all so exposed (not only the girls, but also the males) are brought up to prostitution." Children couldn't enforce their personhood and so they wern't persons unless their fathers enforced their personhood for them, similarly if their fathers declared them non-persons, that is what they were. Abandoned children were still non-people, or at least negligibly people, and thus morally exploitable. This was of course a terrible place to be born disabled, and largely the norm for ancient societies. If you had the misfortune to be born with a club foot and the further misfortune to be saved from exposure to the elements, it would not be into a happy place full of accommodation or security.
In the western world between christinaization and the industrial revolution, disabled people continue to be largely absent from the historical record however it would be a mistake to say that things must then have just been peachy. While people in the Medieval period still had access to the writings of Galen with his proto-scientific theories of impairment, they often understood disability through various crude biblical lenses as either the result of Satan, witchcraft, evil spirits or the manifestation of God's disapproval leading to death - or more rarely as somehow reflecting the torments of Christ leading to security in a religious position. Most of the social history we have of disability in the middle ages comes from accounts of healings at the shrines of saints most of which state that there were no occupations the folks with cured impairments could hold. While a dramatic improvement on what existed before, you can imagine how, where even today raising funding for lung cancer is incredibly difficult due to perceptions of complicity by the public, disabled folks might have a difficult time if they were thought to be impaired as a result of their own sin.
With the enlightenment and industrialization came the medical model for disability as a replacement for the religious one. This was again a vast improvement even with the social upheaval that the industrial revolution brought; a progression from bare genocide to blame to labels. People with physical differences from the ideal of youth, maleness and strength became deviants from a perceived norm in need of control to forcibly adapt them to the 'modern' world. As labor became commodified and human value began to rest on profit, an inability to work became simply valued as a negative commodity, a thing to be fixed mechanically, institutionalized, or ignored. Religion and politics were stripped from notions of disability as adapting the continuing 'tragedy' and 'burden' of disability in the context of social darwinism became professionalized. What we are now beginning to see with the ADA, UN Convention on the Rights of the Disabled, and disability rights groups is so much better - a Rights-Based model for understanding disability. It is a goal of adapting society to the people within it rather than the other way around. It is a shifting of the focus from dependence to an independence that doesn't really have many meaningful parallels in human history.
posted by Blasdelb at 4:22 AM on December 2, 2012 [55 favorites]
If you want a depressing read, the benefits of the future have indeed not been equitably distributed:
The UN Secretary Generals Report on Violence against Children: Thematic Group on Violence against Disabled Children is chock full of incredibly depressing statistics.
posted by Blasdelb at 5:53 AM on December 2, 2012 [2 favorites]
The UN Secretary Generals Report on Violence against Children: Thematic Group on Violence against Disabled Children is chock full of incredibly depressing statistics.
posted by Blasdelb at 5:53 AM on December 2, 2012 [2 favorites]
This is an awfully rosy view of the past that I don't think hold up to facts and a few moments thought.
Wow, that's a lot of typing. No one is going to say "hey, things back in the day were AWESOME! Awesome for EVERYONE!" That's just silly. The actual point of my comment is to highlight the ways in which we have socially and economically marginalized anyone classified as "disabled" (which is a much broader category than simply physically or mentally disabled), rather than to present a vision of some prelapsarian paradise.
And not only did some places have infanticide and worse, but even in the rosiest view of the world you still have a question: Is it better to have a place in society if that means dusk to dawn drudgery seven days a week or having a "job" as a child prostitute, compared to living in a modern country with a reasonably well-developed safety net but being totally economically and socially excluded?
I've lived in places that, while "modern" in the sense that it's today and there are cars and so on, most people are still living an extremely low-tech subsistence agriculture life, with low food security and very little access to public services or modern medicine. Purely anecdotal and worth exactly what you are paying for it, my observation was that there was excellent integration for people with moderate disabilities, because there was an endless list of vital tasks that they could contribute to. But severe disabilities were another story, and I heard stories of people chained in sheds, infanticide, and abuse.
posted by Forktine at 6:16 AM on December 2, 2012 [1 favorite]
Wow, that's a lot of typing. No one is going to say "hey, things back in the day were AWESOME! Awesome for EVERYONE!" That's just silly. The actual point of my comment is to highlight the ways in which we have socially and economically marginalized anyone classified as "disabled" (which is a much broader category than simply physically or mentally disabled), rather than to present a vision of some prelapsarian paradise.
And not only did some places have infanticide and worse, but even in the rosiest view of the world you still have a question: Is it better to have a place in society if that means dusk to dawn drudgery seven days a week or having a "job" as a child prostitute, compared to living in a modern country with a reasonably well-developed safety net but being totally economically and socially excluded?
I've lived in places that, while "modern" in the sense that it's today and there are cars and so on, most people are still living an extremely low-tech subsistence agriculture life, with low food security and very little access to public services or modern medicine. Purely anecdotal and worth exactly what you are paying for it, my observation was that there was excellent integration for people with moderate disabilities, because there was an endless list of vital tasks that they could contribute to. But severe disabilities were another story, and I heard stories of people chained in sheds, infanticide, and abuse.
posted by Forktine at 6:16 AM on December 2, 2012 [1 favorite]
even in the rosiest view of the world you still have a question: Is it better to have a place in society if that means dusk to dawn drudgery seven days a week or having a "job" as a child prostitute, compared to living in a modern country with a reasonably well-developed safety net but being totally economically and socially excluded?
In any question where one is asked to choose between slavery and rape, or sitting the game on the sidelines, I am always going to choose to not be raped or enslaved.
posted by Jilder at 6:43 AM on December 2, 2012 [1 favorite]
In any question where one is asked to choose between slavery and rape, or sitting the game on the sidelines, I am always going to choose to not be raped or enslaved.
posted by Jilder at 6:43 AM on December 2, 2012 [1 favorite]
"And not only did some places have infanticide and worse, but even in the rosiest view of the world you still have a question: Is it better to have a place in society if that means dusk to dawn drudgery seven days a week or having a "job" as a child prostitute, compared to living in a modern country with a reasonably well-developed safety net but being totally economically and socially excluded?"
I think that not only does this question have a very very easy answer, it is not one we should really need to ask. At least in the US, the ADA federally bars employment discrimination against those with disabilities that do not directly affect the nature of the work (ie: blind bus drivers), which has been opening up economic inclusion and mandated universal accessibility has already done a lot to address social exclusion. There is a fuck of a lot more work that needs to be done, but your dichotomy is bullshit, we don't need to accept either.
posted by Blasdelb at 6:53 AM on December 2, 2012 [2 favorites]
I think that not only does this question have a very very easy answer, it is not one we should really need to ask. At least in the US, the ADA federally bars employment discrimination against those with disabilities that do not directly affect the nature of the work (ie: blind bus drivers), which has been opening up economic inclusion and mandated universal accessibility has already done a lot to address social exclusion. There is a fuck of a lot more work that needs to be done, but your dichotomy is bullshit, we don't need to accept either.
posted by Blasdelb at 6:53 AM on December 2, 2012 [2 favorites]
Being normal is overrated.
posted by Bovine Love at 6:57 AM on December 2, 2012 [1 favorite]
posted by Bovine Love at 6:57 AM on December 2, 2012 [1 favorite]
but your dichotomy is bullshit, we don't need to accept either
My sentence was poorly worded and I'd edit the crap out of it if I could. It detracted from what I was trying to say and I regret saying it.
posted by Forktine at 7:28 AM on December 2, 2012 [1 favorite]
My sentence was poorly worded and I'd edit the crap out of it if I could. It detracted from what I was trying to say and I regret saying it.
posted by Forktine at 7:28 AM on December 2, 2012 [1 favorite]
Forktine has a very good point although certainly (as he agreed with the criticism), humans have an ill history of not treating the disabled with dignity, respect and as useful members of society. But he still has a very good point that institutions or conventions existed in the past, which do not seem to exist now, that attempted to give persons with disabilities a more useful, active role in the public business of society.
I have a high functioning developmentally disabled aunt. She can't live on her own (her decisionmaking skills are about on par with a preteen), but otherwise, she doesn't require much guidance to get through a typical day or routine tasks. She reads and does math at a high school level, but she has difficulty getting thoughts out of her head and into conversation and she can't manage her money. She will call 911 in an emergency, but probably can't otherwise help. She likes to hook rugs and she loves the hell out of Twitter because it keeps her touch with her nieces, nephews and sisters. She lives with my parents now that my grandmother has died. All her social programs have closed for lack of funding. Basically, she's an adult with no purpose in life, which is actually something she's aware of and occasionally unhappy with. She reads, plays games on the computer, helps with household chores, visits with relatives, but her life actually used to have more to it and she is quite capable of doing more.
She's roughly 60 and, forty years ago, she lived in a group home which also provided jobs for its residents. Some were custodians--they did the vacuuming and trash can emptying in office, for instance. Some worked as baggers or stockists in grocery stores. They did non-dangerous, non-technical assembly line work, like putting the boxed product into larger boxes for shipping. Manual tasks like unpacking supplies at florists. Stuff that's not mentally taxing, not overly physically taxing, that can be done by people with developmental impairments.
A lot of these jobs simply no longer exist in the US, of course. But the de-institutionalization movement--for all the good that it honestly did and for all the abuses that it ended--had the perverse effect of re-marginalizing some disabled populations. Because group homes had a person whose job it was to find work for the residents, to supervise the residents at work, to coordinate with their employers to ensure their safety as well as to ensure that the work was being done properly, their residents were visible productive members of their community. My aunt worked at a grade school, in the cafeteria, and supervisors from her group home were more necessary for getting employees to work on time and dealing with thoughtless or nasty grade school kids and their parents than they were for helping the residents or keeping them on task. But my aunt worked. She supplemented her disability income; work structured her day; it improved her health; and it helped her define her place in the world.
Society used to try to help some disabled populations contribute to the "working" parts of society and we don't anymore--at least in my anecdotal experience. I consider that an ill of society. We need to question how we define useful occupation for persons with disabilities, particularly with regard to developmental disabilities.
posted by crush-onastick at 9:11 AM on December 2, 2012 [10 favorites]
I have a high functioning developmentally disabled aunt. She can't live on her own (her decisionmaking skills are about on par with a preteen), but otherwise, she doesn't require much guidance to get through a typical day or routine tasks. She reads and does math at a high school level, but she has difficulty getting thoughts out of her head and into conversation and she can't manage her money. She will call 911 in an emergency, but probably can't otherwise help. She likes to hook rugs and she loves the hell out of Twitter because it keeps her touch with her nieces, nephews and sisters. She lives with my parents now that my grandmother has died. All her social programs have closed for lack of funding. Basically, she's an adult with no purpose in life, which is actually something she's aware of and occasionally unhappy with. She reads, plays games on the computer, helps with household chores, visits with relatives, but her life actually used to have more to it and she is quite capable of doing more.
She's roughly 60 and, forty years ago, she lived in a group home which also provided jobs for its residents. Some were custodians--they did the vacuuming and trash can emptying in office, for instance. Some worked as baggers or stockists in grocery stores. They did non-dangerous, non-technical assembly line work, like putting the boxed product into larger boxes for shipping. Manual tasks like unpacking supplies at florists. Stuff that's not mentally taxing, not overly physically taxing, that can be done by people with developmental impairments.
A lot of these jobs simply no longer exist in the US, of course. But the de-institutionalization movement--for all the good that it honestly did and for all the abuses that it ended--had the perverse effect of re-marginalizing some disabled populations. Because group homes had a person whose job it was to find work for the residents, to supervise the residents at work, to coordinate with their employers to ensure their safety as well as to ensure that the work was being done properly, their residents were visible productive members of their community. My aunt worked at a grade school, in the cafeteria, and supervisors from her group home were more necessary for getting employees to work on time and dealing with thoughtless or nasty grade school kids and their parents than they were for helping the residents or keeping them on task. But my aunt worked. She supplemented her disability income; work structured her day; it improved her health; and it helped her define her place in the world.
Society used to try to help some disabled populations contribute to the "working" parts of society and we don't anymore--at least in my anecdotal experience. I consider that an ill of society. We need to question how we define useful occupation for persons with disabilities, particularly with regard to developmental disabilities.
posted by crush-onastick at 9:11 AM on December 2, 2012 [10 favorites]
On one hand, I'm glad that Specialsterne has been able to find jobs that work for so many autistic people.
On the other hand, I wonder if they're not unintentionally promoting a narrow view of autism and how autistic traits manifest. For anecdata, I have a friend whose autism manifests, in part, as profound difficulty with 3D spatial skills. In the dance classes we took together, she would have to verbally talk her way through the steps, because following the teacher's footwork visually was impossible.
She would completely and utterly fail the lego mindstorm test. But that doesn't make her any less autistic, and she has a job that takes advantage of her particular intense interests.
I know, plural of anecdote is not data and all that, but there seems to be evidence that women are underdiagnosed with autistic spectrum disorders, and have different strengths and symptom profiles than men. Here's an abstract that suggests that autistic women have more depressive symptoms from the teen years onward, which might be another obstacle in job-hunting. (Can't access entire article, sorry.) This admittedly not very scientific nytimes article suggests that autistic girls are more verbally-oriented than math and spatially oriented, which squares with my anecdata. Also, good old sexism and patriarchy means that women get less slack cut for them when they miss social cues or say something too blunt. That autistic man who never brings a cake to the office? Would be immediately jumped on as a women, because women nurture and bake things, dontcha know. The article only mentions the existence of autistic women once, in very brief passing, which I think is telling.
Hyper-focused guys who obsess over trains and build perfect lego models are only one version of how autism can look. I'd hate to see otherwise qualified people with autism left out of opportunities like this just because they have different strengths and passions.
posted by ActionPopulated at 11:09 AM on December 2, 2012 [9 favorites]
On the other hand, I wonder if they're not unintentionally promoting a narrow view of autism and how autistic traits manifest. For anecdata, I have a friend whose autism manifests, in part, as profound difficulty with 3D spatial skills. In the dance classes we took together, she would have to verbally talk her way through the steps, because following the teacher's footwork visually was impossible.
She would completely and utterly fail the lego mindstorm test. But that doesn't make her any less autistic, and she has a job that takes advantage of her particular intense interests.
I know, plural of anecdote is not data and all that, but there seems to be evidence that women are underdiagnosed with autistic spectrum disorders, and have different strengths and symptom profiles than men. Here's an abstract that suggests that autistic women have more depressive symptoms from the teen years onward, which might be another obstacle in job-hunting. (Can't access entire article, sorry.) This admittedly not very scientific nytimes article suggests that autistic girls are more verbally-oriented than math and spatially oriented, which squares with my anecdata. Also, good old sexism and patriarchy means that women get less slack cut for them when they miss social cues or say something too blunt. That autistic man who never brings a cake to the office? Would be immediately jumped on as a women, because women nurture and bake things, dontcha know. The article only mentions the existence of autistic women once, in very brief passing, which I think is telling.
Hyper-focused guys who obsess over trains and build perfect lego models are only one version of how autism can look. I'd hate to see otherwise qualified people with autism left out of opportunities like this just because they have different strengths and passions.
posted by ActionPopulated at 11:09 AM on December 2, 2012 [9 favorites]
Glad to see ActionPopulated's comments; the last thing we need is gendered definitions of a syndrome/spectrum disorder that exclude women (or men) who fit the bill in every other respect. Temple Grandin spoke to the different types of nerdiness in her recent TED talk, although she didn't reference gender specifically.
Of course, it helps if the neurotypical managers actually manage the people on their staff, especially those who might need extra help dealing with clients. I was saddened by this anecdote from the article.
In one case, the company was contacted by a medical-technology company, which needed help testing new prescription-tracking software. This seemed a marvelous bit of luck, says Rune Oblom, Specialisterne’s business manager, because there was a consultant on staff interested in illnesses. Everything was going fine until a medical team arrived to try out the software, and the consultant spent the entire morning recounting to them, in detail, the medical treatments that he, his mother and the rest of his family received over the years. Another consultant was assigned to finish the software-testing job. “I told him that the doctors were not very happy and felt he was a disturbing factor,” Oblom says. “But he couldn’t see it.”
I'm a software tester. This doesn't sound like autism at work so much as a training/management issue that could have been resolved pretty easily before the fact. Did anyone advise the tester on exactly what/how to report to the client? Testers all over the world, neurotypical or not, need to be trained or coached on how to deal with clients. Without further info on the tester's preparation for his meeting with the clients, it sounds like management screwed up here.
posted by Currer Belfry at 11:37 AM on December 2, 2012
Of course, it helps if the neurotypical managers actually manage the people on their staff, especially those who might need extra help dealing with clients. I was saddened by this anecdote from the article.
In one case, the company was contacted by a medical-technology company, which needed help testing new prescription-tracking software. This seemed a marvelous bit of luck, says Rune Oblom, Specialisterne’s business manager, because there was a consultant on staff interested in illnesses. Everything was going fine until a medical team arrived to try out the software, and the consultant spent the entire morning recounting to them, in detail, the medical treatments that he, his mother and the rest of his family received over the years. Another consultant was assigned to finish the software-testing job. “I told him that the doctors were not very happy and felt he was a disturbing factor,” Oblom says. “But he couldn’t see it.”
I'm a software tester. This doesn't sound like autism at work so much as a training/management issue that could have been resolved pretty easily before the fact. Did anyone advise the tester on exactly what/how to report to the client? Testers all over the world, neurotypical or not, need to be trained or coached on how to deal with clients. Without further info on the tester's preparation for his meeting with the clients, it sounds like management screwed up here.
posted by Currer Belfry at 11:37 AM on December 2, 2012
ActionPopulated's comments are interesting. I have something causing cognitive impairments in me (and being aware of that, and posting about it, kind of just makes me want to curl up in a little ball and cry) without a real diagnosis of anything. My mother has always thought that I'm probably autistic but, somewhat hilariously, I think she exhibits more autistic traits than me and I don't really relate to or exhibit typical autistic traits AT ALL.
Except, maybe I kinda do. I can relate to the above about autistic women a lot--being underdeveloped in spatial perception, math and logic; overdeveloped in language and verbal skills, lifelong on-and-off depression and frustration starting in my preteen years and constantly (happened today; happens every day; nothing I can do about it) being singled out, picked on and bullied for being slightly "off," missing social cues, not conforming to expected stereotypes, etc.
What very little I've read previously about autistic women has been fascinatingly alien to me, but now I wonder how much of that is misinterpretation or miscommunication on the writers' parts. Or personal quirks I just don't share. Or reading Paul Park.
Blah. I feel sad now. Intrigued and sad.
posted by byanyothername at 6:23 PM on December 2, 2012
Except, maybe I kinda do. I can relate to the above about autistic women a lot--being underdeveloped in spatial perception, math and logic; overdeveloped in language and verbal skills, lifelong on-and-off depression and frustration starting in my preteen years and constantly (happened today; happens every day; nothing I can do about it) being singled out, picked on and bullied for being slightly "off," missing social cues, not conforming to expected stereotypes, etc.
What very little I've read previously about autistic women has been fascinatingly alien to me, but now I wonder how much of that is misinterpretation or miscommunication on the writers' parts. Or personal quirks I just don't share. Or reading Paul Park.
Blah. I feel sad now. Intrigued and sad.
posted by byanyothername at 6:23 PM on December 2, 2012
Reminds me of the science fiction book The Speed of Dark, where a company has a staff of autistics.
I have not read that book, but your bringing up sci-fi brought to mind Blindsight by Peter Watts, in which in a dark dystopian future sends a space expedition which includes, among other misfits, a "woman" who is composed of multiple personalities fully realized in one body, a member of a hyperautistic prehistoric vampiric subspecies, and an emotionless narrator with half a brain.
posted by Apocryphon at 12:24 AM on December 3, 2012 [1 favorite]
I have not read that book, but your bringing up sci-fi brought to mind Blindsight by Peter Watts, in which in a dark dystopian future sends a space expedition which includes, among other misfits, a "woman" who is composed of multiple personalities fully realized in one body, a member of a hyperautistic prehistoric vampiric subspecies, and an emotionless narrator with half a brain.
posted by Apocryphon at 12:24 AM on December 3, 2012 [1 favorite]
« Older The rise of the secret supper club | GOBLET GROTTO Newer »
This thread has been archived and is closed to new comments
We all have our particular strengths, and many autistic have especially unique and unusual strengths. In an ideal world we'd all find a place where our strengths can be used and we can feel fulfilled. It is particularly difficult for autistics to find that place because they have trouble with basics such as social awareness and interaction.
I think it is really wonderful that someone is working to find these people the types of jobs that fit their unique skills.
posted by eye of newt at 7:52 PM on December 1, 2012 [4 favorites]