4 ms·

Person with Asperger's here. The one thing that bothers me more than neurotypical people writing about autism without actually speaking with people with autism

Person with Asperger's here. The one thing that bothers me more than neurotypical people writing about autism without actually speaking with people with autism are people with autism who think that they can speak for the "community" The first rule is always "if you have met one person with autism, you've met one person with autism". There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. So I don't agree with large parts of this article. E.g I prefer person-first language, but that's not because I think, that autism is a pathology. I do identify myself with autism, but I don't think that this is the largest aspect of my personality, so I don't like to be called "autist" (as much as I don't want to be called "bigfoot" because I have 13 shoe size). Yes, the author says, that there are people with autism who might disagree. But if he knows this, why is he talking about "we" and "us" all the time?

CoastalCoder 5y ago
> There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. Would you mind expanding on that a bit? I'm probably misunderstanding, but it seems to me that by definition an attribute like "on the Asperger spectrum" is the kind of partitioning you're saying doesn't exist.
- harryruhr 5y ago
  Of course there is the autism spectrum. But it is a spectrum, it is not something that goes from mild to severe or where people have every symptom on the list in a certain degree. The spectrum is diverse - so it is wrong to make any general assumption about it. (Note: I am not talking about "autism spectrum disorder" diagnosis according to DSM V or ICD-11. These diagnoses have a defined set of required symptoms. But the spectrum is far bigger than that).
plantataco 5y ago
> The first rule is always "if you have met one person with autism, you've met one person with autism" https://en.wikipedia.org/wiki/Anna_Karenina_principle https://en.wikipedia.org/wiki/Anna_Karenina_principle
- pseudalopex 5y ago
  How do you think they're connected?
  - deleted 5y ago
    [deleted]
stordoff 5y ago
That stood out to me as well - "We Are Not A Monolith [...] and we will read your coverage accordingly" just seems odd. FWIW, I have some disabilities (OCD, some physical difficulties), and I just don't care about "person-first"/"identity-first"[1] language. Intent matters _so_ much more. I've had people who've obviously been trained to use person-first language be actively unpleasant (often the classic "you don't look disabled" and questioning the authenticity of my documents), and people who've used clumsy, borderline-offensive language go miles out of their way to help me (and the other way around). It's not really a useful indicator about someone's attitudes. I will say "disabled person" stands out to me less, as "person with disabilities" can come across as a little forced. That's probably specific to individuals though, as I've just heard the former used much more during my life, and, as the article says, I'm sure many will disagree with any point I've made here. [1] This feels like something of a misnomer as it's a descriptor, not your entire identity
mbilokonsky 5y ago
Hi, I'm the author, I'd love to help clarify this. When I say I'm speaking for "the community" I mean very specifically that I'm a member of the community and I'm speaking about us. I went to great lengths repeatedly throughout the piece to make sure I was very explicit that I was only one voice. I made a minimum of claims about Autism and what it is. Mostly what I argued was about what it isn't. I use the phrase "If you have met one person with autism you have met one person with autism" literally in the essay, so the fact that you would trot it out as a sort of correction is a bit confusing to me. I don't think you disagree with me, I think you're a bit upset to see nuances that you don't agree with put forward -- even when they insist that disagreement is also valid. Is that right?
- harryruhr 5y ago
  >I mean very specifically that I'm a member of the community and I'm speaking about us. I still have problem with the word "us". What do you mean by "community"? If you mean a certain organization you should say so. In the Asperger's forum in which I participate we agreed, that everyone should speak only for themselve, which means to use "I" and "me" instead of "us" and "we".
  - mbilokonsky 5y ago
    Great! That's a valid perspective and you should keep it! In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.
    - trobertson 5y ago
      > twitter community This is where the disconnect is coming from. Twitter 'communities' are a tiny minority of persons. They do not represent the everyday person. This is particularly so with autism, as autism frequently entails social difficulties that get people ostracized from the communities they attempt to join. Twitter, in particular, is quick to ostracize, and you should therefore consider that "Autism Twitter" contains only the subset of autistic persons who can socially pass as conversant, and who choose to be vocal on social networks.
pseudalopex 5y ago
I thought it was clear they wanted to speak for a smaller group. Are there words they could have used to do that without you feeling like they wanted to speak for you?

CoastalCoder 5y ago

> There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. Would you mind expanding on that a bit? I'm probably misunderstanding, but it seems to me that by definition an attribute like "on the Asperger spectrum" is the kind of partitioning you're saying doesn't exist.

harryruhr 5y ago
Of course there is the autism spectrum. But it is a spectrum, it is not something that goes from mild to severe or where people have every symptom on the list in a certain degree. The spectrum is diverse - so it is wrong to make any general assumption about it. (Note: I am not talking about "autism spectrum disorder" diagnosis according to DSM V or ICD-11. These diagnoses have a defined set of required symptoms. But the spectrum is far bigger than that).

plantataco 5y ago

> The first rule is always "if you have met one person with autism, you've met one person with autism" https://en.wikipedia.org/wiki/Anna_Karenina_principle https://en.wikipedia.org/wiki/Anna_Karenina_principle

pseudalopex 5y ago
How do you think they're connected?
- deleted 5y ago
  [deleted]

stordoff 5y ago

That stood out to me as well - "We Are Not A Monolith [...] and we will read your coverage accordingly" just seems odd. FWIW, I have some disabilities (OCD, some physical difficulties), and I just don't care about "person-first"/"identity-first"[1] language. Intent matters _so_ much more. I've had people who've obviously been trained to use person-first language be actively unpleasant (often the classic "you don't look disabled" and questioning the authenticity of my documents), and people who've used clumsy, borderline-offensive language go miles out of their way to help me (and the other way around). It's not really a useful indicator about someone's attitudes. I will say "disabled person" stands out to me less, as "person with disabilities" can come across as a little forced. That's probably specific to individuals though, as I've just heard the former used much more during my life, and, as the article says, I'm sure many will disagree with any point I've made here. [1] This feels like something of a misnomer as it's a descriptor, not your entire identity

mbilokonsky 5y ago

Hi, I'm the author, I'd love to help clarify this. When I say I'm speaking for "the community" I mean very specifically that I'm a member of the community and I'm speaking about us. I went to great lengths repeatedly throughout the piece to make sure I was very explicit that I was only one voice. I made a minimum of claims about Autism and what it is. Mostly what I argued was about what it isn't. I use the phrase "If you have met one person with autism you have met one person with autism" literally in the essay, so the fact that you would trot it out as a sort of correction is a bit confusing to me. I don't think you disagree with me, I think you're a bit upset to see nuances that you don't agree with put forward -- even when they insist that disagreement is also valid. Is that right?

harryruhr 5y ago
>I mean very specifically that I'm a member of the community and I'm speaking about us. I still have problem with the word "us". What do you mean by "community"? If you mean a certain organization you should say so. In the Asperger's forum in which I participate we agreed, that everyone should speak only for themselve, which means to use "I" and "me" instead of "us" and "we".
- mbilokonsky 5y ago
  Great! That's a valid perspective and you should keep it! In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.
  - trobertson 5y ago
    > twitter community This is where the disconnect is coming from. Twitter 'communities' are a tiny minority of persons. They do not represent the everyday person. This is particularly so with autism, as autism frequently entails social difficulties that get people ostracized from the communities they attempt to join. Twitter, in particular, is quick to ostracize, and you should therefore consider that "Autism Twitter" contains only the subset of autistic persons who can socially pass as conversant, and who choose to be vocal on social networks.

pseudalopex 5y ago

I thought it was clear they wanted to speak for a smaller group. Are there words they could have used to do that without you feeling like they wanted to speak for you?