On 22nd December 2017, Spectrum published an article with the headline: "Partnerships with people on the spectrum yield rich research insights."
We had agreed to be interviewed for this article. We felt it was an opportunity to inform Spectrum's readers about the scope and importance of the roles autistic people may play in autism research.
Instead, to our disappointment, the two named autistic people in the article were subject to misrepresentation and a systematic exclusion of their voices.
Unlike all others named and featured in the article, neither Kabie Brook nor Michelle Dawson was interviewed, neither was directly quoted, and neither was provided any links to their work or online profiles.
The message is that autism research is not something these autistics can communicate about, much less contribute to as equals, and that autistics must always and only be spoken for by others.
The striking segregation of named autistic people in this article is inconsistent with journalist ethics. The autistics who were misrepresented and denied a voice have been directly harmed.
Our goal is to bring this to the attention of Spectrum readers, so they may be better informed. We hope that Spectrum will improve its standards in the future.
Kabie Brook, Autism Rights Group Highland
Michelle Dawson, University of Montreal
Sue Fletcher-Watson, University of Edinburgh
Post-script: this open letter is also posted here.
3 comments:
I like your blog, I have two children on the spectrum, my son is non verbal and aggressive and he is at residential facility called Hillcrest In massachusetts because Vermont doesn't anything like that here. Hillcrest is 3.5 hrs away.
I realized when I reached out for help that there are a number of resources available for the entire family. Reaching out and connecting with other people really does help.
Have you heard about this autism theory? https://www.researchgate.net/publication/328734204_A_theory_of_evolution-biased_reduction_of_gene-expression_manifesting_as_autism_the_antiinnatia_theory_Improvedupdated_presentation_of_A_theory_of_general_impairment_of_gene-expression_manifesting_as_
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