Trigger Warnings: Ableism, anti-vax, silencing of autistic people using functioning levels and discussions of such.
Easter Seals:
I heard that you sent an apology and chose not to call autism an epidemic anymore. I'm glad you did it. It was a big step in the right direction. Huge, really. You moved from "It's an epidemic!" to "People are finding out, and we're going to help them get the services they need." One of these is scary. The other is honest. Yes, it can be hard, but help is there, and that's the big thing. (No, I don't like the way services look. But you're not the service provider or really the policy maker, so you're not the one who needs to hear about those issues. It'd be nice, since groups that are getting money have power, but that's not what this response is about.) And you know what? Employment training for adults is one of your things too! So that's another thing that's good. You're putting the focus where it belongs, on actually doing the things rather than saying scary things that increase stigma.
And yes, you're taking a lot of flack for it. It looks to me like a lot of it is from people who think vaccines and autism are related. Going to put it out there that I am fourth generation autistic, at least, direct line of descent. Yes, I'm fully vaccinated and autistic, but genetics. Genetics is a thing, autism runs in families, the big study everyone likes to point to blaming vaccines was found a fraud.
But you know what? That's besides the point too. The point is that autistic people are here, right now, and that referring to autism as an epidemic and a public health crisis does increase stigma. That means that for people who want their autistic children/children with autism to have a better life, calling it those things would be counterproductive even if it were true. (It's not. I really, really wish I hadn't lost the link to the study that found an autism spectrum rate right around 1% in British adults. Not "people living in institutions." General population, adults, 1%, right around where the kids are, no epidemic.)
They're also saying that you "sold out to high functioning adults." No. You listened to autistic people. The people who have the closest relationship to autism there can be for anyone. And it's not as if the people who were asking for the change and thanking you for it are all given the "high functioning" label. (No one ever gave me any functioning label, FYI. High is probably the one I'd get, but there is that whole self-inflicted scars thing, and the can't drive thing, and the can't actually do most activities of daily living thing... they seem to care more about verbal ability, though, and I usually speak well?) Anyways, functioning labels aren't as great as they seem because there are too many variables on what kinds of support needs people have, and some of the people asking for and thanking for the change wouldn't get the "high functioning" label by the standards of anyone who uses them. The idea that only someone considered to be "high functioning" could care about language is a fallacy, and one that comes from the old idea that autistic people wouldn't have thoughts or opinions. We do. Saying otherwise is just another way of denying the right of autistic people to speak about autism, claiming that anyone autistic enough to matter is too autistic to speak- that way, only parents matter. Which is, of course, wrong.
So thank you. Thank you for choosing language that doesn't add to the stigma and focusing on actually giving help. Fear tactics tend to work short term but cost a lot long term, and the cost of epidemic language is one the children will pay and that autistic adults are paying. Thank you for deciding not to add further to that debt.
This is the text of the apology they sent, just for reference:
Easter Seals:
I heard that you sent an apology and chose not to call autism an epidemic anymore. I'm glad you did it. It was a big step in the right direction. Huge, really. You moved from "It's an epidemic!" to "People are finding out, and we're going to help them get the services they need." One of these is scary. The other is honest. Yes, it can be hard, but help is there, and that's the big thing. (No, I don't like the way services look. But you're not the service provider or really the policy maker, so you're not the one who needs to hear about those issues. It'd be nice, since groups that are getting money have power, but that's not what this response is about.) And you know what? Employment training for adults is one of your things too! So that's another thing that's good. You're putting the focus where it belongs, on actually doing the things rather than saying scary things that increase stigma.
And yes, you're taking a lot of flack for it. It looks to me like a lot of it is from people who think vaccines and autism are related. Going to put it out there that I am fourth generation autistic, at least, direct line of descent. Yes, I'm fully vaccinated and autistic, but genetics. Genetics is a thing, autism runs in families, the big study everyone likes to point to blaming vaccines was found a fraud.
But you know what? That's besides the point too. The point is that autistic people are here, right now, and that referring to autism as an epidemic and a public health crisis does increase stigma. That means that for people who want their autistic children/children with autism to have a better life, calling it those things would be counterproductive even if it were true. (It's not. I really, really wish I hadn't lost the link to the study that found an autism spectrum rate right around 1% in British adults. Not "people living in institutions." General population, adults, 1%, right around where the kids are, no epidemic.)
They're also saying that you "sold out to high functioning adults." No. You listened to autistic people. The people who have the closest relationship to autism there can be for anyone. And it's not as if the people who were asking for the change and thanking you for it are all given the "high functioning" label. (No one ever gave me any functioning label, FYI. High is probably the one I'd get, but there is that whole self-inflicted scars thing, and the can't drive thing, and the can't actually do most activities of daily living thing... they seem to care more about verbal ability, though, and I usually speak well?) Anyways, functioning labels aren't as great as they seem because there are too many variables on what kinds of support needs people have, and some of the people asking for and thanking for the change wouldn't get the "high functioning" label by the standards of anyone who uses them. The idea that only someone considered to be "high functioning" could care about language is a fallacy, and one that comes from the old idea that autistic people wouldn't have thoughts or opinions. We do. Saying otherwise is just another way of denying the right of autistic people to speak about autism, claiming that anyone autistic enough to matter is too autistic to speak- that way, only parents matter. Which is, of course, wrong.
So thank you. Thank you for choosing language that doesn't add to the stigma and focusing on actually giving help. Fear tactics tend to work short term but cost a lot long term, and the cost of epidemic language is one the children will pay and that autistic adults are paying. Thank you for deciding not to add further to that debt.
This is the text of the apology they sent, just for reference:
Dear [recipient]On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right.Autism is not an epidemic. Autism is not a public health crisis. Simply put, more people today are living with a diagnosis of autism, in large part because our diagnostic tools are better and more available.In fact, in the next 20 minutes, a family will be told their child has autism. They'll have questions. They may worry about the future. They may feel lost and alone, unsure where to turn for help. This is where Easter Seals comes in.
There's one more element of the letter that's pretty radical, and that seems mostly to have escaped notice next to the outright apology for the epidemic language. Near the end of the letter, when, without fanfare, they talk about older autistic adults trying to stay in their homes. The acknowledgement that there ARE elderly autistic people, not in institutions, who have lived and worked and possibly even have their own homes, but will need help as they age, is so, so rare, and so important to inculcating the knowledge that autism is a condition of the entire lifespan, not just of children. And that autistic people DO become adults, and aren't just permanent children or perpetually helpless. And that there is no cure, but there is hope for a decent life, and there ARE people who have gone before and could tell us a lot about how they've managed.
ReplyDeleteOne of the constant refrains of articles on autism that makes me nuts is the "But what will happen to these kids as they become adults?! We just don't know!" as if the current 18-21 year-olds are the first ever generation of autistic people to become adults (rather than just the first generation to grow up diagnosed and acknowledged as autistic). When there ARE middle-aged and elderly autistic people, and you could ASK THEM what their lives have been like.
So good job, Easter Seals. I know you're not a perfect organization, but you have some very important ideas on the table. Thanks again.