Trigger Warning: Suicide, Abuse/Murder of disabled people
This comes from Karla's ASD Page. It's a good resource. You can find it by searching on Facebook, or by clicking on the picture, which links back to her page. Seriously. Check her out.
And now I will say stuff that parent bloggers should also read.
You might think your child will never read what you wrote. You might even be right, but you also might not be. Plenty of us could read before anyone realized that we could because it was too hard to communicate what we understood, which means it's possible that your child already has read it, especially if you've had your blog open in front of your child because you think your child can't read or ever left your child in the room with a computer without you. There are autistic children where no one thought they could read or understand what was going on around them, and then it turned out that they could read a printed page in a couple of seconds.
You might think that your child will never be in a position where passing for not autistic would be helpful, but where google could out them. If so, you are judging what skills your child will ever have and what situations people with those skills can get into based on what skills your child has now. Remember that Julia Bascom spent time in special classrooms and ABA. Remember that Kassiane had a speech delay. Remember that Amy Sequenzia does not speak. Remember that many of the self-advocates you meet were much like your child when they were children, but that they grew up. Just because your child can not take care of his or her self now, can not live alone now (show me a six year old who can and I will be very impressed,) can not speak now, can not write now, does not mean that these will be true forever. If I were to tell you that a neurotypical, able-bodied child of yours were to have his or her future potential judged for life at age six, I hope you would laugh. You should laugh just as hard when your child is autistic. So CHANGE NAMES. Don't give the internet enough information to figure out who you are either, because people who know who your kids are probably know you are their parent.
You might think that your child being autistic really is a tragedy. For the sake of your child, you need to move past this phase. Truly. Being considered a tragedy (and no, your child is not likely to be able to separate his or herself from the fact that he or she is autistic, so don't try thinking of your child as fine and the autism as tragic!) is not good for anyone's long term success by any measures of it. They have shown time and time again that achievement is much higher in all areas when the expectation is that it will eventually happen, and we don't expect tragedies to do anything besides be tragic.
You might believe that the stereotype is true, and that this makes spreading it OK. Any autism stereotype you want to chuck at me if that's your reasoning, go ahead. I will find you counterexamples, and if there is even one counterexample, that's one person who can be hurt by the stereotype. Don't do it.
You might believe that you are just trying to raise awareness. Unfortunately, tragedy and fear based awareness kills people. It gets transplants denied and it gets children murdered by their parents and it gets people neglected until they just die. I can't be patient with actions that get people like me killed.
You might believe that autism caused suicide. It didn't. Societal reactions to autism pushed a person into a position where suicide was the reaction. That's not autism's fault. That's society's fault. That's one more body to remind us that fear and tragedy awareness kills people, and sometimes that body isn't even that of an autistic person. You shouldn't care more when it's a neurotypical person killed by this version of awareness, but if you are, know this: Some of the people it kills are neurotypical. One of the BABIES it killed was neurotypical.
You could believe any number of things. In the end, ask yourself this: Let's say that your kid could read, could tell you what he or she had just read. If you wouldn't want your kid to read a post, don't put it online. If you wouldn't want someone considering hiring to find that post about the person they were considering hiring, either don't put it online or make sure it is 100% impossible to find by googling your name or by googling your kids name (and make sure you say names have been changed so that you don't screw up some other kid.) And if it puts forward ideas about autism that autistic adults say make their lives harder, don't put it up there. It's going to make your kid's life harder too someday.
This comes from Karla's ASD Page. It's a good resource. You can find it by searching on Facebook, or by clicking on the picture, which links back to her page. Seriously. Check her out.
And now I will say stuff that parent bloggers should also read.
You might think that your child will never be in a position where passing for not autistic would be helpful, but where google could out them. If so, you are judging what skills your child will ever have and what situations people with those skills can get into based on what skills your child has now. Remember that Julia Bascom spent time in special classrooms and ABA. Remember that Kassiane had a speech delay. Remember that Amy Sequenzia does not speak. Remember that many of the self-advocates you meet were much like your child when they were children, but that they grew up. Just because your child can not take care of his or her self now, can not live alone now (show me a six year old who can and I will be very impressed,) can not speak now, can not write now, does not mean that these will be true forever. If I were to tell you that a neurotypical, able-bodied child of yours were to have his or her future potential judged for life at age six, I hope you would laugh. You should laugh just as hard when your child is autistic. So CHANGE NAMES. Don't give the internet enough information to figure out who you are either, because people who know who your kids are probably know you are their parent.
You might think that your child being autistic really is a tragedy. For the sake of your child, you need to move past this phase. Truly. Being considered a tragedy (and no, your child is not likely to be able to separate his or herself from the fact that he or she is autistic, so don't try thinking of your child as fine and the autism as tragic!) is not good for anyone's long term success by any measures of it. They have shown time and time again that achievement is much higher in all areas when the expectation is that it will eventually happen, and we don't expect tragedies to do anything besides be tragic.
You might believe that the stereotype is true, and that this makes spreading it OK. Any autism stereotype you want to chuck at me if that's your reasoning, go ahead. I will find you counterexamples, and if there is even one counterexample, that's one person who can be hurt by the stereotype. Don't do it.
You might believe that you are just trying to raise awareness. Unfortunately, tragedy and fear based awareness kills people. It gets transplants denied and it gets children murdered by their parents and it gets people neglected until they just die. I can't be patient with actions that get people like me killed.
You might believe that autism caused suicide. It didn't. Societal reactions to autism pushed a person into a position where suicide was the reaction. That's not autism's fault. That's society's fault. That's one more body to remind us that fear and tragedy awareness kills people, and sometimes that body isn't even that of an autistic person. You shouldn't care more when it's a neurotypical person killed by this version of awareness, but if you are, know this: Some of the people it kills are neurotypical. One of the BABIES it killed was neurotypical.
You could believe any number of things. In the end, ask yourself this: Let's say that your kid could read, could tell you what he or she had just read. If you wouldn't want your kid to read a post, don't put it online. If you wouldn't want someone considering hiring to find that post about the person they were considering hiring, either don't put it online or make sure it is 100% impossible to find by googling your name or by googling your kids name (and make sure you say names have been changed so that you don't screw up some other kid.) And if it puts forward ideas about autism that autistic adults say make their lives harder, don't put it up there. It's going to make your kid's life harder too someday.
Autism still isn't a childhood condition. It is lifelong, including much of the disability for many autistics. You discuss these success instances. But those who didn't grow up to be able to read a page in a couple of seconds, have less opportunity to publicize themselves, and are less trumped in articles talking of autism. The spectrum includes individuals with various characteristics and problems.
ReplyDeleteI'm not one of the successful autistic adults. I have been diagnosed on the spectrum, yet as I grew into adulthood, my functioning and learning problems remained burdensome. I don't get how expectation causes achievement. A lot was expected of me over various years, but I performed way below those expectations repeatedly.
Not really the point. You know NOW what your abilities are NOW. No one actually knew when you were a KID what your abilities would be NOW, and anyone who claimed to was being irresponsible. Which means blogging honestly about what you can and can't do now? Fine. Blogging about what someone else can and can't ever do? Not fine.
DeleteI know full well that it's a spectrum.
And it's not as much that expectation of success actively causes it (it helps, but is not complete) as that assumption of failure DOES actively cause failure. That one's been shown.
I'd add: Parents should never say something about their child that they wouldn't want to hear spread as gossip about themselves as an adult.
ReplyDeleteBy which I mean: On illness: Okay to say "Jane got really sick from food poisoning, poor kid." Not okay to say, "John got absolutely gross food poisoning! Projectile vomiting! [blah blah continued graphic description blah]"
Because I don't know any adult who can tell me honestly that they wouldn't be bothered by having someone take malicious glee in airing the graphic details of an embarrassing incident like that. So don't do it to your kids. Ever. No, being their parent does not give you the right to humiliate them behind their backs.