Going to hammer out a quick post today, because I'm annoyed.
A link here:
Spectrum: Ask me first - What self-assessments can tell us about autism
It appears, blimey, crikey, knock me down with a feather, stone the bleeding crows, that after extensive research, an astonishing new discovery has been made: autistics might know something about the experience of being autistic.
FFS.
It is not amazing science breakthrough! to say that members of a minority (or otherwise oppressed/suppressed) community are the people to talk to when studying those actual people. Want to know about the experience of women? Ask women. Want to know about the experience of trans people? Ask trans people. Want to know about the experience of wheelchair users? Ask wheelchair users. Want to know about the experience of people of colour? Ask people of colour. Want to know about the experience of gay and bi people? Ask gay and bi people. And so on and so forth.
Is it because autism is so often associated - wrongly - with children, that means discussion is led by allistic parents and allistic researchers? Again, a startling development: autistic children become autistic adults. Autistic adults have experience of their whole lives. Imagine how much you could learn by talking to elderly autistics*, people who have been autistic for seventy, eighty, a hundred years or more, who have seen so much of how the world treats autistics.
Is it perhaps because the stereotypical view of autism is non-communicative? But only a small minority of autistic adults and adolescents are non-communicative (it's hard to pin down any kind of precise numbers because of the diagnosis gap). Yes, quite a lot of young autistic children are non-communicative, but then communication is developed at a different rate by different children, whether autistic or not. Most babies do not start out as erudite as Dorothy Parker.
And - this is very, very important - non-verbal does not mean non-communicative. Just because an autistic person may not be communicating verbally right now, that absolutely does not mean they are incapable of communication. Many non-verbal autistic adults and adolescents are willing and able to communicate well through other methods. If we are paid attention to, if we are taken seriously, then a very large majority of autistics will be able to tell you about the experience, the community, what we have to face and what needs to change.
We are the experts on ourselves. Don't ignore what we have to say, whatever method we use to say it.
*tragically, the life expectancy for autistic people is much lower than the average for the general population; as with many issues, it's difficult to get accurate numbers because of the diagnosis gap, but 'middle age' is probably a fair rough estimate - however, just because many autistic people die at a horribly young age, frequently because of suicide rather than medical comorbidities, doesn't mean there aren't elderly autistics, and it doesn't mean that we shouldn't value their opinion on how to better treat autistic people and maybe improve that awful low life expectancy
A link here:
Spectrum: Ask me first - What self-assessments can tell us about autism
It appears, blimey, crikey, knock me down with a feather, stone the bleeding crows, that after extensive research, an astonishing new discovery has been made: autistics might know something about the experience of being autistic.
FFS.
It is not amazing science breakthrough! to say that members of a minority (or otherwise oppressed/suppressed) community are the people to talk to when studying those actual people. Want to know about the experience of women? Ask women. Want to know about the experience of trans people? Ask trans people. Want to know about the experience of wheelchair users? Ask wheelchair users. Want to know about the experience of people of colour? Ask people of colour. Want to know about the experience of gay and bi people? Ask gay and bi people. And so on and so forth.
Is it because autism is so often associated - wrongly - with children, that means discussion is led by allistic parents and allistic researchers? Again, a startling development: autistic children become autistic adults. Autistic adults have experience of their whole lives. Imagine how much you could learn by talking to elderly autistics*, people who have been autistic for seventy, eighty, a hundred years or more, who have seen so much of how the world treats autistics.
Is it perhaps because the stereotypical view of autism is non-communicative? But only a small minority of autistic adults and adolescents are non-communicative (it's hard to pin down any kind of precise numbers because of the diagnosis gap). Yes, quite a lot of young autistic children are non-communicative, but then communication is developed at a different rate by different children, whether autistic or not. Most babies do not start out as erudite as Dorothy Parker.
And - this is very, very important - non-verbal does not mean non-communicative. Just because an autistic person may not be communicating verbally right now, that absolutely does not mean they are incapable of communication. Many non-verbal autistic adults and adolescents are willing and able to communicate well through other methods. If we are paid attention to, if we are taken seriously, then a very large majority of autistics will be able to tell you about the experience, the community, what we have to face and what needs to change.
We are the experts on ourselves. Don't ignore what we have to say, whatever method we use to say it.
*tragically, the life expectancy for autistic people is much lower than the average for the general population; as with many issues, it's difficult to get accurate numbers because of the diagnosis gap, but 'middle age' is probably a fair rough estimate - however, just because many autistic people die at a horribly young age, frequently because of suicide rather than medical comorbidities, doesn't mean there aren't elderly autistics, and it doesn't mean that we shouldn't value their opinion on how to better treat autistic people and maybe improve that awful low life expectancy
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