The Depiction of Autism and Why it Matters
Go read it. Seriously. Then come back and read what I think of it down here if you want.
So: I can totally understand why she didn't name the video ``Autism Every Day" by Autism Speaks, since the organization did take it down, and they might go all ``slander!" on her. I don't think they could do so successfully, since, you know, they DID post that video, but better safe than sorry. Also, mainstream media probably doesn't like Autism Speaks Bashing, and most of the autism community can probably tell which video she's talking about. If not, well, it's that one. I've watched it. I then melted down. (My meltdowns don't include and self-harming behaviors; I'm fine. I mostly cry and shake/rock, and I'm either non-speaking or I'm ranting about the trigger, with no middle ground there. That was a ranting one.)
She then explains that yes, raising an autistic kid can be harder than raising a neurotypical kid. She's right. It totally is. Sometimes it's just because the challenges you get have nothing to do with the ones you expect, and sometimes there are strictly more challenges, some of which pose a safety risk. Both are valid, and neither should be presented as ``This is autism, period." I don't think our current functioning labels are the way to do this, since that's a rather black and white depiction, and I'd note that she doesn't use those labels in her description either. YAY! Instead, she sticks to talking about exactly why the depictions we get are bad, things like ``Telling the world to be scared of a group does no favors for that group" and ``Yeah. Suggesting that they're all savants or useless is going to lead to discrimination, and it's also NOT TRUE."
So she talks about how these depictions initially affected her. From what I've seen on Emma's Hope Book, which she also writes, I believe it. In some of the earlier posts, she was talking about cures, since we're portrayed as broken and all. And she admits to being worried about Emma's future. I'd be worried about Emma's future too. Anyone who is KNOWN to be autistic is going to get discriminated against, and what I've read on the hope book makes it sound like passing may not be an option for her. (I've kinda given up on this passing thing, and I'm relying more on people not putting the pieces together on the basis of a perceived functioning level.) Also, she has some challenges that might actually impair functioning. Because yes, that exists in autism. It really does. Good coping mechanisms can help with a lot of it, good supports with more (yes, we really do need those resources!), and respect helps with those differences that aren't actually harmful, like the non-dangerous stims or not making eye contact.
So yeah, I think this is a good article. She admits to the fact that autism can be scary at times, but that it's not the only thing autism is by any stretch. She admits that she is sometimes scared. And then she says that showing fear and despair as the only relevant emotions is hurtful to autistic people. She says that it's not the whole picture, and that she has an autistic daughter who struggles, makes progress, and fits so many descriptors besides just autistic. And that's exactly right. Portray it as the way it REALLY is, a huge spectrum/constelllation. (I like the constellation idea better, personally.) We've got the people who never communicate using words at all, those who type, use AAC, sign, write, speak, or any combination, including resorting to another method when talking fails. We've got people who are highly successful and visible, people who live fairly normal lives, people who are advocates, people who chose not to participate in advocacy for any number of perfectly valid reasons, people who could hurt themselves during a meltdown, people who wont hurt themselves during a meltdown, people who can delay a meltdown long enough that you'll probably never see it actually happen, people who don't work because they actually can't, people who don't work because they are discriminated against, people who will/do/have gone to college, people who wont go to college, people who can live alone, people who can but probably shouldn't, people who absolutely can not live alone, people who will marry and have kids, people who wont do one or both of those for reasons that may or may not have anything to do with being autistic, people who drive, people who don't drive,people who, yes, smear feces, and people who would be disgusted at the thought of touching their own feces for longer than absolutely necessary. Oh hey, that is a pretty wide range. Maybe want something n-dimensional instead of only 4-dimensional? Point is, ANY ``this is autism, period" type depiction is going to hurt us, and a fear-mongering one is especially bad. And she seems to get it. YAY.
(Can anyone tell how happy I am to get to review an autism article from a fairly mainstream source that is actually really good?)
Go read it. Seriously. Then come back and read what I think of it down here if you want.
So: I can totally understand why she didn't name the video ``Autism Every Day" by Autism Speaks, since the organization did take it down, and they might go all ``slander!" on her. I don't think they could do so successfully, since, you know, they DID post that video, but better safe than sorry. Also, mainstream media probably doesn't like Autism Speaks Bashing, and most of the autism community can probably tell which video she's talking about. If not, well, it's that one. I've watched it. I then melted down. (My meltdowns don't include and self-harming behaviors; I'm fine. I mostly cry and shake/rock, and I'm either non-speaking or I'm ranting about the trigger, with no middle ground there. That was a ranting one.)
She then explains that yes, raising an autistic kid can be harder than raising a neurotypical kid. She's right. It totally is. Sometimes it's just because the challenges you get have nothing to do with the ones you expect, and sometimes there are strictly more challenges, some of which pose a safety risk. Both are valid, and neither should be presented as ``This is autism, period." I don't think our current functioning labels are the way to do this, since that's a rather black and white depiction, and I'd note that she doesn't use those labels in her description either. YAY! Instead, she sticks to talking about exactly why the depictions we get are bad, things like ``Telling the world to be scared of a group does no favors for that group" and ``Yeah. Suggesting that they're all savants or useless is going to lead to discrimination, and it's also NOT TRUE."
So she talks about how these depictions initially affected her. From what I've seen on Emma's Hope Book, which she also writes, I believe it. In some of the earlier posts, she was talking about cures, since we're portrayed as broken and all. And she admits to being worried about Emma's future. I'd be worried about Emma's future too. Anyone who is KNOWN to be autistic is going to get discriminated against, and what I've read on the hope book makes it sound like passing may not be an option for her. (I've kinda given up on this passing thing, and I'm relying more on people not putting the pieces together on the basis of a perceived functioning level.) Also, she has some challenges that might actually impair functioning. Because yes, that exists in autism. It really does. Good coping mechanisms can help with a lot of it, good supports with more (yes, we really do need those resources!), and respect helps with those differences that aren't actually harmful, like the non-dangerous stims or not making eye contact.
So yeah, I think this is a good article. She admits to the fact that autism can be scary at times, but that it's not the only thing autism is by any stretch. She admits that she is sometimes scared. And then she says that showing fear and despair as the only relevant emotions is hurtful to autistic people. She says that it's not the whole picture, and that she has an autistic daughter who struggles, makes progress, and fits so many descriptors besides just autistic. And that's exactly right. Portray it as the way it REALLY is, a huge spectrum/constelllation. (I like the constellation idea better, personally.) We've got the people who never communicate using words at all, those who type, use AAC, sign, write, speak, or any combination, including resorting to another method when talking fails. We've got people who are highly successful and visible, people who live fairly normal lives, people who are advocates, people who chose not to participate in advocacy for any number of perfectly valid reasons, people who could hurt themselves during a meltdown, people who wont hurt themselves during a meltdown, people who can delay a meltdown long enough that you'll probably never see it actually happen, people who don't work because they actually can't, people who don't work because they are discriminated against, people who will/do/have gone to college, people who wont go to college, people who can live alone, people who can but probably shouldn't, people who absolutely can not live alone, people who will marry and have kids, people who wont do one or both of those for reasons that may or may not have anything to do with being autistic, people who drive, people who don't drive,people who, yes, smear feces, and people who would be disgusted at the thought of touching their own feces for longer than absolutely necessary. Oh hey, that is a pretty wide range. Maybe want something n-dimensional instead of only 4-dimensional? Point is, ANY ``this is autism, period" type depiction is going to hurt us, and a fear-mongering one is especially bad. And she seems to get it. YAY.
(Can anyone tell how happy I am to get to review an autism article from a fairly mainstream source that is actually really good?)
Alyssa, I actually do not think I can express how much what you've written here means to me.
ReplyDeleteI want to get it, I need to get it, for my daughter, Emma, but also for you and for each and every Autist who has suffered because so many refuse to. You and others like you are who I look to when I cannot sleep at night because I have allowed myself to believe my fears and am falling into the dark hole of despair. Because as I wrote in the HuffPo piece you give me hope. Thank you for giving me hope.