, 13 tweets, 4 min read Read on Twitter
Confidential stuff and #autism. A quick thread.
Good to make the acquaintance of a researcher on here who wanted to talk about confidential data. I want to talk about this, because there's an aspect of this that doesn't match. Here we go.../ ctd
In my national and international roles, I have to keep information confidential. There are strict laws, strict professional regulations. In autism research, lots of rules around keeping participants anonymous, etc. And yet...as far as the eye can see..../
..we have parents and carers of #autistic children parading their child in front of the public, by name, with their photo. No detail is spared. The child's toilet habits discussed, the child's meltdowns videoed for public viewing & put online. All without that child's consent/
Every single piece of humiliating, embarrassing, misleading and 'othering' material possible about that #autistic child written into articles, magazines, books, blogs and goodness only knows what else. This is the background of how researchers are influenced in what autism 'is'/
We then get those researchers, fuelled with this misleading and humiliating nonsense, setting up research project after research project to look at our 'deficits, as #autistic people. How to fix us, how to improve us, how to alter us, how to remove us from the genetic future/
That background of some parents parading that #autistic child as a tragedy (sometimes for personal gain) then fuels whole new actual tragedies, where autistic people are misunderstood in even worse ways, and subjected to even worse treatment. It becomes its own cycle of hell/
A cycle of hell where the actual answer would have been to respect the very confidentiality, integrity and humanity of that autistic child.
To have respected their privacy.
To have chosen to have a deep understanding of #autistic ways of encountering others and world/
And to have chosen to ask, "How can we change the behaviour of those who encounter autistic people? How can we change their thinking, their responses, away from disappointment, fear, tragedy..and into mutual understanding, mutual flourishing, mutual journeying through life?"/
So, the subject of confidentiality is indeed at the heart of good research.
It starts with a question. "Do I, as a researcher, start from a position of bias against autistic people, based on a misportrayal, a failure of confidentiality around autistic children?" Being clear../
...there are excellent parents out there, and excellent researchers. Being clear also that all parents will make their fair share of errors. We all do. I did as a parent to a fabulous autistic son. We all agree that some autistic people need support, as do their fine families/
But I want the research departments to think more broadly about this question of confidentiality, this question of potential bias. We need more collaborative research with, by, and for, #autistic people. We need all researchers in this field to work with us, as fellow humans/
And we want a future where #autistic people are safer, are better understood, are better able to access the things they need to thrive and to contribute further to society. We already do, and in far more ways than research currently shows. Let's change that, together. Thank you.
Wanting to explore bias against autistic individuals? This is a reasonable starting point: journals.sagepub.com/doi/abs/10.117… in which the researchers ask whether people are happy 'living near' us and 'sitting near' us. I don't think I need say more about prejudice, for sure.
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