Language and autism

People say that because they are describing what they see. It's the same attitude that leads to comments like "You don't look autistic". Even the other day someone said "severely autistic" in my presence. She's a special needs teaching assistant. She knows I'm autistic and that my son is autistic. It's disheartening because you think she would know better but also I don't see a distinction between someone that is labelled severe and myself, whereas they do. I think she actually said "severely autistic" for my benefit, as in "I'm talking about someone who's autistic but I don't see you that way". I identify more with all autistic people than I do with any neurotypical people. I feel like a total outsider in the presence of most NTs whereas they view me as "one of them", as far as I can tell - because I don't look or act how they think an autistic person would be stereotypically. People like labels because it saves them from doing work. Unless something directly affects someone why would they learn about it? 

I think it will change as the general population becomes more aware of what autism is, as more are diagnosed and there is more exposure about our experiences. The majority of material up until recently was not about the lived experience of autistic people, it was about perceptions of autism from the outside. That's changing though and that in turn will change the general perception of what autism is. I think it's especially encouraging that the NTs are reading works by autistic authors, celebrities are "coming out" as autistic, younger people seem to be more aware and accepting. In the meantime challenge that perception if you feel able to. Yeah, it's annoying as hell. I like the approach that Katherine May (autistic author) has - at a social event she could tell someone was going to say something about autistic people and she said something like "Before you go any further I want to let you know that I'm autistic and I wouldn't want you to say something that you may regret if you didn't have that information ".  

This Person (Ottilie) said:

I think it will change as the general population becomes more aware of what autism is,

If we, as autists / autistic people / aspergers etc cannot even agree on our own definitions and labels, this does not bode well for how neutotypicals will be able to understand us.

Is there any definitive source of these definitions?

We really should reach a consensus if at all possible and follow this, even allowing that in society today there will be fringes who want their own version of the label or who disagree on details.

Is this asking too much?

Language is always evolving. Queer used to be used as an insult but now people have reclaimed the word and made it their own, as an example. We don't have to agree on what each individual prefers to be referred as. I don't like "disorder" because I see autism as a neuro minority that is part of the diversity of humanity. Calling it a disorder is pathologising autism and defining it as psychologically abnormal, which it isn't. Slaves wanting to escape from bondage were pathologised in 1850s America ("drapetomania"), homosexuality was pathologised , etc. There's a history of pathologising anything or anyone that is considered outside of normality. If anyone wants to use ASD as a label then that's up to them but I prefer autism, plain and simple. I'm not going to get wound up about it. The label Asperger's has been debated here recently and we know the reasons for/against using it. The problem with "severe autism" is that it only describes what people see and it gives the impression that there is a scale of autism with severe at the extreme end. "Autism" as currently defined is an umbrella term that groups people together based on the common difficulties they experience. It doesn't actually describe much except Ottilie (for example) has communication difficulties just as Iain does, just as Peter does. My communication difficulties may look very different to yours, which means our autism-ness may look different. That doesn't describe how we experience life or if we are suffering. Someone that is described as severely autistic may not suffer as much as I do but the majority of people may make assumptions that the severely autistic person does suffer more than I do. I present as neurotypical to most people. I have the ability to mask. I have relationships. I have a job. I don't stim in public. That's what I think people are describing when they say "severely autistic" - someone that is incapable of those things and behaves in ways that they perceive as typically autistic (rocking, flapping, echolalia, learning difficulties) with no hope of living independently. I think that's what Peter was saying about the label "severely autistic" - people have a perception that what that appears to be is true autism and people feel pity for people that present that way, whereas autistic people that are able to mask and appear more like a neurotypical person are viewed as being less autistic and not suffering as much, which is incorrect because quality of life is difficult to measure. Is an individual less likely to suffer if they are not as aware of what they are missing out on or the pressure to behave a certain way? Maybe. I was told years ago that my son would suffer higher levels of anxiety than if he was less able to mask his autism, which seems to have been correct from our experience. There's no way of actually knowing though. We'll never know if he would have felt less anxious if his IQ was lower or he wasn't able to mimic neurotypical behaviour. 

When my son was younger a lot of people didn't even know the word "autism". Neurotypical wasn't a term that was widely used. There has been progress. I don't know how you think a consensus would be reached. It seems that the language has been imprecise and inadequate and exclusionary and that it's still evolving as understanding grows. I don't think the labels need to be agreed upon before there can be more understanding. In psychology a minority influencing a majority is called conversion. Over time minorities can change the views of the majority to accept the minorities viewpoint ("minority influence"). It would seem logical that a majority would hold the power to make the minority conform and be compliant through social pressure. However minorities are able to influence and convince the majority that the minority's views are right through informational social influence, that is providing the majority with new ideas and new information, which leads them to re-examine their views. In order to change the majority’s view, the minority has to propose a clear position and has to defend and advocate its position consistently. Consistency can be diachronic (consistent over time) or synchronic (all minority members agree and back each other up). An example is the suffragette movement. A reporter came up with the term "suffragette" to belittle women fighting for the vote and they embraced the term and used it to their advantage. Before that they called themselves Women's Social and Political Union. I'm giving that as an example because it didn't harm their movement that the label that they eventually became know as was different to the one they started out as. What worked was being consistent over time and as a group in agreement about the desired outcome to influence the majority and achieve their goals. I don't think it harms a cause for language to become more precise and inclusive, or embrace the words that may be used in an attempt to belittle or come from a place of ignorance and make them your own. Autism is hardly a lovely word, in my opinion, and it fails to express the richness of how I experience life through my senses. I think the Maori word for autism invented by Keri Opai is the closest to what I feel I am - "Takiwātanga" my own time and space. www.altogetherautism.org.nz/.../

Language is always evolving. Queer used to be used as an insult but now people have reclaimed the word and made it their own, as an example. We don't have to agree on what each individual prefers to be referred as. I don't like "disorder" because I see autism as a neuro minority that is part of the diversity of humanity. Calling it a disorder is pathologising autism and defining it as psychologically abnormal, which it isn't. Slaves wanting to escape from bondage were pathologised in 1850s America ("drapetomania"), homosexuality was pathologised , etc. There's a history of pathologising anything or anyone that is considered outside of normality. If anyone wants to use ASD as a label then that's up to them but I prefer autism, plain and simple. I'm not going to get wound up about it. The label Asperger's has been debated here recently and we know the reasons for/against using it. The problem with "severe autism" is that it only describes what people see and it gives the impression that there is a scale of autism with severe at the extreme end. "Autism" as currently defined is an umbrella term that groups people together based on the common difficulties they experience. It doesn't actually describe much except Ottilie (for example) has communication difficulties just as Iain does, just as Peter does. My communication difficulties may look very different to yours, which means our autism-ness may look different. That doesn't describe how we experience life or if we are suffering. Someone that is described as severely autistic may not suffer as much as I do but the majority of people may make assumptions that the severely autistic person does suffer more than I do. I present as neurotypical to most people. I have the ability to mask. I have relationships. I have a job. I don't stim in public. That's what I think people are describing when they say "severely autistic" - someone that is incapable of those things and behaves in ways that they perceive as typically autistic (rocking, flapping, echolalia, learning difficulties) with no hope of living independently. I think that's what Peter was saying about the label "severely autistic" - people have a perception that what that appears to be is true autism and people feel pity for people that present that way, whereas autistic people that are able to mask and appear more like a neurotypical person are viewed as being less autistic and not suffering as much, which is incorrect because quality of life is difficult to measure. Is an individual less likely to suffer if they are not as aware of what they are missing out on or the pressure to behave a certain way? Maybe. I was told years ago that my son would suffer higher levels of anxiety than if he was less able to mask his autism, which seems to have been correct from our experience. There's no way of actually knowing though. We'll never know if he would have felt less anxious if his IQ was lower or he wasn't able to mimic neurotypical behaviour. 

When my son was younger a lot of people didn't even know the word "autism". Neurotypical wasn't a term that was widely used. There has been progress. I don't know how you think a consensus would be reached. It seems that the language has been imprecise and inadequate and exclusionary and that it's still evolving as understanding grows. I don't think the labels need to be agreed upon before there can be more understanding. In psychology a minority influencing a majority is called conversion. Over time minorities can change the views of the majority to accept the minorities viewpoint ("minority influence"). It would seem logical that a majority would hold the power to make the minority conform and be compliant through social pressure. However minorities are able to influence and convince the majority that the minority's views are right through informational social influence, that is providing the majority with new ideas and new information, which leads them to re-examine their views. In order to change the majority’s view, the minority has to propose a clear position and has to defend and advocate its position consistently. Consistency can be diachronic (consistent over time) or synchronic (all minority members agree and back each other up). An example is the suffragette movement. A reporter came up with the term "suffragette" to belittle women fighting for the vote and they embraced the term and used it to their advantage. Before that they called themselves Women's Social and Political Union. I'm giving that as an example because it didn't harm their movement that the label that they eventually became know as was different to the one they started out as. What worked was being consistent over time and as a group in agreement about the desired outcome to influence the majority and achieve their goals. I don't think it harms a cause for language to become more precise and inclusive, or embrace the words that may be used in an attempt to belittle or come from a place of ignorance and make them your own. Autism is hardly a lovely word, in my opinion, and it fails to express the richness of how I experience life through my senses. I think the Maori word for autism invented by Keri Opai is the closest to what I feel I am - "Takiwātanga" my own time and space. www.altogetherautism.org.nz/.../