http://www.thinkingautismguide.com/2018/06/against-autism-parent-feedback-loop-of.html
This is a good description of a pattern from a parent that seems to be outside the feedback loop they describe. It's a pattern I well believe exists, and contributes to the very disturbing numbers of parent-murdered autistic children. Somewhere in the massive stress of caring for an autistic person, the parents begin to ignore the child's humanity, focusing on them only as a "burden." It then somehow becomes okay to abuse the child, and even kill them. And instead of being reviled, such behavior is deemed "understandable."
In my work in the community, I mainly work with Autism Support of Kent County, but I've also reached out to other groups and attended events from those groups. One group, which I won't name in hopes of being respectful, seems mainly comprised of older, battle-hardened parents with what they call "adult children." Basically, autistic and other special-needs people over the age of 18. The group is most characterized by their cynicism. They are old, tired, and angry at the systems that won't support them or their children without a fight. This is all entirely understandable, it's a hard world to have special needs in, and it was harder still years ago. However, even as things improve, they continue with this cynicism and cutting sarcasm, aimed at whoever happens to be nearby.
I wasn't personally told to go away when I mentioned that I wasn't a parent, but was in fact autistic... but in general the people there wanted very little to do with me. I wasn't sufficiently like their kids to matter to them, and I wasn't a parent, so I didn't understand. I was, simply, an outsider. Almost a non-entity. A tourist. Despite that I literally live in a very similar world to the ones their kids live in.
Such an attitude is infectious, I think. These particular parents in the group may be too old to hop into the digital exhibitionism that the author describes here, but any newer parents that join the group to learn their tricks for handling the system... aren't. So it really worries me to read about things like this, with parents putting the worst sides of their children on display for the whole world.
If my parents had done that, there would be videos of me in tears everywhere. Videos of mild self-harm. Screaming. Vicious sarcastic remarks that I didn't mean and shouldn't be remembered. And do you know what having all those videos and pictures would have done to my trust and my life?
It's very simple: it would literally destroy my ability to stand on my own two feet and try to take on the world. I wouldn't trust my parents, the very people who raised me, because they'd have put my worst moments out in the world for any person in the world to see. Those moments would forever haunt me, because I'd never know who'd seen them and who hadn't. And I would know exactly who did it.
Job interviews, college applications, volunteer jobs, anyone could search my name and find those videos. Forget getting a job. Forget getting into a good school. Forget being able to earn anyone's respect. Those videos would define me as a person to thousands of people I'd never met. Never mind who I turned out to be. Never mind who I might still become.
The only thing that would matter to most people, would be those videos.
I was born about 5 years before the Internet really caught on. And about 5 years before Asperger's Syndrome started to be recognized in the US. Had I gotten my diagnosis younger, and had I been born later, this absolutely would be a problem I would be facing. I think my parents probably wouldn't have opted to make ultra-public their struggles in raising me, even for the sake of feeling better about themselves. But they might have posted a few pictures, or a video here and there.
I consider myself fortunate to have been born when I was... because I don't know if I could handle that additional stress. It's already hard enough to be what I am, without having crystal clear recollections of my worst moments available to anyone online.
I would say I can't imagine how parents could be so cruel, but unfortunately, the last few years have been an education in how, and how often, people dehumanize each other. Black people, women, gay people, immigrants, and special-needs people, it's all there in our history. And history does love to repeat itself.
This is a good description of a pattern from a parent that seems to be outside the feedback loop they describe. It's a pattern I well believe exists, and contributes to the very disturbing numbers of parent-murdered autistic children. Somewhere in the massive stress of caring for an autistic person, the parents begin to ignore the child's humanity, focusing on them only as a "burden." It then somehow becomes okay to abuse the child, and even kill them. And instead of being reviled, such behavior is deemed "understandable."
In my work in the community, I mainly work with Autism Support of Kent County, but I've also reached out to other groups and attended events from those groups. One group, which I won't name in hopes of being respectful, seems mainly comprised of older, battle-hardened parents with what they call "adult children." Basically, autistic and other special-needs people over the age of 18. The group is most characterized by their cynicism. They are old, tired, and angry at the systems that won't support them or their children without a fight. This is all entirely understandable, it's a hard world to have special needs in, and it was harder still years ago. However, even as things improve, they continue with this cynicism and cutting sarcasm, aimed at whoever happens to be nearby.
I wasn't personally told to go away when I mentioned that I wasn't a parent, but was in fact autistic... but in general the people there wanted very little to do with me. I wasn't sufficiently like their kids to matter to them, and I wasn't a parent, so I didn't understand. I was, simply, an outsider. Almost a non-entity. A tourist. Despite that I literally live in a very similar world to the ones their kids live in.
Such an attitude is infectious, I think. These particular parents in the group may be too old to hop into the digital exhibitionism that the author describes here, but any newer parents that join the group to learn their tricks for handling the system... aren't. So it really worries me to read about things like this, with parents putting the worst sides of their children on display for the whole world.
If my parents had done that, there would be videos of me in tears everywhere. Videos of mild self-harm. Screaming. Vicious sarcastic remarks that I didn't mean and shouldn't be remembered. And do you know what having all those videos and pictures would have done to my trust and my life?
It's very simple: it would literally destroy my ability to stand on my own two feet and try to take on the world. I wouldn't trust my parents, the very people who raised me, because they'd have put my worst moments out in the world for any person in the world to see. Those moments would forever haunt me, because I'd never know who'd seen them and who hadn't. And I would know exactly who did it.
Job interviews, college applications, volunteer jobs, anyone could search my name and find those videos. Forget getting a job. Forget getting into a good school. Forget being able to earn anyone's respect. Those videos would define me as a person to thousands of people I'd never met. Never mind who I turned out to be. Never mind who I might still become.
The only thing that would matter to most people, would be those videos.
I was born about 5 years before the Internet really caught on. And about 5 years before Asperger's Syndrome started to be recognized in the US. Had I gotten my diagnosis younger, and had I been born later, this absolutely would be a problem I would be facing. I think my parents probably wouldn't have opted to make ultra-public their struggles in raising me, even for the sake of feeling better about themselves. But they might have posted a few pictures, or a video here and there.
I consider myself fortunate to have been born when I was... because I don't know if I could handle that additional stress. It's already hard enough to be what I am, without having crystal clear recollections of my worst moments available to anyone online.
I would say I can't imagine how parents could be so cruel, but unfortunately, the last few years have been an education in how, and how often, people dehumanize each other. Black people, women, gay people, immigrants, and special-needs people, it's all there in our history. And history does love to repeat itself.
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