Pre-Exchange Blogpost: Autism Research

Pellicano and Stears offer three principles for fostering inclusivity in their paper, “Bridging Autism, Science and Society: Moving Toward an Ethically Informed Approach to Autism Research.” The first principle is that we need to acknowledge that there is a gap between the scientists research and the autistic stakeholders and their families. They note their will always be disagreement in the field, such as those who want a cure and those who do not. The second principle they suggest is that we need to allow the voices of the families and the autistic to be heard, not overpowered by the scientists, funding agencies, and the government. Thirdly, autistics should be involved in decision-making about research and contribute to the conversation of application of research.

I think that these ideas are important in order to move science forward in an effective way. The people who are the experts in these situations are really the autistics, not the scientists, and their voices should be heard. In addition, I feel that since every autistic is different, they might all have something different that they want to understand in terms of their bodies, behaviors, or anything else. It is essential that these autistic stakeholders have a voice in the research conversation, and I think their opinions would add great value to the development of the studies.

Gernsbacher also offers some practical steps to carry out some of these goals. One that stuck out to me was that autistics should be encouraged and enabled to receive graduate training. To me this seems like the most basic idea, but it could have a huge impact. In addition, she suggests that the stigma of autism needs to be broken down, and they should be assessed based not on their participation in the “social dance,” but for the things that they can contribute.

Additional steps could include making the neurotypical population more aware about autism. This might help misinterpretations of autism to be erased, and lead towards autistics not being judged based on their outward behaviors, but on their thoughts, ideas, and contributions to research and the world. Overall, I think it is important for autistics to be active participants in research opportunities because they are truly the authority in autism.

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2 Responses to Pre-Exchange Blogpost: Autism Research

  1. Vikram says:

    I think your point about every autistic experience likely being different is an interesting one–in that case, given limited time and resources, what should be studied? Who should decide?

  2. Haley Hataway says:

    Hi Claire,

    I think you gave a really good analysis of why autistic input is so important, and how it could shape research in a way that could create real progress. I agree that creating awareness is essential in making inclusion the norm in scientific research. Do you have any ideas on how this could be spread?

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