My feedback regarding GEMMA Autism research project
I have sent the following letter to researchers of University of Tampere, in response to this article posted on Neurocenter’s website.
Feedback, referring to your recent article @Neurocenter’s website
Dear Reija and Matti,
I’m writing to comment your recent article concerning of your participation to GEMMA research on Neurocenter’s website from ethical point of view, according to my expertise in social and moral philosophy.
I find your article deeply troubling. First and foremost, it demonstrates complete ignorance regarding autism research during the 2000’s and its key findings. Considering the level of ignorance exhibited, it is unlikely that your research will meet even basic standards for good scientific research. Considering, that in order to be excellent, scientific research must also meet high ethical standards, this project has little hope off achieving the success it aims at. As Heini Natri has already pointed out, your basic research approach is outdated and its basic premises are widely questioned in international autism research community.
You seem to be completely oblivious to the fact, that your research goal is in fact eugenics. You fail to understand, that autism is an identity, not a ”condition” under which there exists a neurotypical person. You profess to represent social sciences, yet you manage to completely ignore autism as a social construct and a minority position. In fact, you seem to be oblivious even about existence of the concept of neurominorities. Your understanding of autism is deeply neurotypicality-centered (nentist), prejudiced and downright hostile. You view neurotypicality as paragon of humanity, and any deviations from it as flaws that must be eradicated, not accommodated or even understood. You seem unaware of existence of minority stress phenomenon (see eg. Botha & Frost 2018: Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population) and the fact that several problems that have traditionally been framed as ”autism traits” are in fact results of serious discrimination and resulting minority stress.
You propose to solve problems caused by structural discrimination, stigmatization and prejudice, hatred and minority stress by eradicating the marginalized minority. You have allowed such prejudices to guide your planning instead of adopting a critical attitude. You also appear to be completely ignorant about double empathy problem (Milton 2012: On the ontological status of autism: the ’double empathy problem’) and empathy gap and difficulties existence of empathy gap causes to neurotypical researchers attempting to interpret or understand autistic behavior without consulting autistic people. Your ignorance about your lack of objectivity is a methodological problem, as it prevents you from correctly assessing strengths and weaknesses of your research. You claim ability and right to judge the value of lives of members of neurominority. You reduce value of lives of these people to what they presumably cost to society that discriminates against that minority (Heini Natri already pointed out that even this presumption of yours is false and based on bad science) You also manage to forget existence of the many autistic people who have played essential roles in advancing civilization and science. If it were up to you, Einstein would never have been born and Elon Musk should not live. You have no right or authority to judge the value of autistic lives, and even less objectivity necessary for passing such judgement. Only autistic people themselves can properly assess the value of their own lives and lived experience. Your approach to autism is hostile and its expressed eugenistic goals are nothing less than preparation to committing a crime against humanity.
Autism is an identity (Botha, Hanlon & Williams 2021 Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti). Therefore, it is not possible to cure autism so that a neurotypical personality ”hiding” somewhere appears once autism has been eradicated. It is only possible to destroy the autistic person. Considering that your stated aim is ending existence of autistic people, it is ethically wrong to acquire and use data of autistic babies who have been unable to give their informed consent for enrollment. This is yet another flaw in your methodology. You are essentially forcing them to participate in the destruction of their own selves and their kind. Parental consent is not a sufficient substitute for the participants’ own consent when goals of research are this profound, especially considering that attitudes of neurotypical parents towards their children’s autism can be nentist and as such, not represent best interest of autistic children. Also, considering what your level of being informed is, it is highly unlikely, that any ”consent” given by parents can be fairly called an informed one. How could you have possibly provided them the kind of information that is necessary prerequisite for making an objectively informed decision?
It is obvious that no autistic people have been consulted about goals or methods of this research, which alone is a serious methodological flaw considering existence of empathy gap as mentioned earlier. This neglect means that you have failed to observe ”nothing of us without us” principle in gravest manner, once again falsely claiming expertise over something you are totally clueless about.
It is beyond absurd that you chose to publish your research during Autism Awareness Week. Your choice of timing is cruel, and has caused pain to already distressed people.
I fully agree with Heini Natri’s suggestions on how to improve your project, and add that until you have reformulated your research plan, methodology and goals of your research in collaboration with autistic people, researchers and advocates, you should stop the research.
Expert (Autism spectrum and sensory sensitivities)