Here is Part I:
An interesting slogan that came up during the symposium:
Admit how little we know, Admit how much of our knowledge is invented/shorthand/tentative
What I learned about ETHICS from the symposium:
Equity and Excellence
High expectations and presumed competence
Inclusion (separate is not equal)
Self-advocacy and pride
This past weekend I attended the 1st symposium by the Autistic Self Advocacy Network. The symposium was held at Harvard Law School and the topics that were presented were the The Ethical, Legal, and Social Implications of Autism Research. The ASAN President Ari Ne’eman led the conference with other Autistic Adults and many participants involved with Autism research from universities, the federal government, and the United Kingdom.
It explored many issues of why scientific researchers are not fully capturing the quality of life all Autistic people need. Science is an exceptional useful methodology. It helps make discoveries about who we are for the greater truth of our existence. The symposium brought together why Autistic rights and Autism research should be building a participatory framework. Funds should be built on quality of life than prevention and cure. It is hopeful that this new dialogue will bring every one in the Autistic community as a whole so that we are united in our common goals.
The following statements are paraphrases of what some of the speakers spoke about at the symposium: Some challenges to Autism research is when scientific elitism and the fear of engagement (the unknown) become problematic. One of the main issues is how elitism and bias are hindrance to helping Autistic people have better quality of life. “Bias is bad science and bad practices” [From my understanding the discussion was about scientific bias, assuming a theory was true or false without evidence]. The indifference of scientists is shown when they act as if they know better. However, this is not necessarily true. There is no prescribed way that we engage in our research and we all need to learn from one another. There are a lack of structural mechanisms and there is a need to resolve conflicts. We need to resolve these issues through representation and self-advocacy in the Autistic community. For instance, the symposium participants feel the problem with the DSM is the committee is trying to do 2 things at once: using a tool to determine Who is Autistic? And, using a tool to see What people are doing about that?
The participants at the symposium suggested a need to switch from describing how Autism is a deficit to neutral language. This change will give others an understanding that Autism is just a natural human development in our existence. Learning more about this, researchers need to observe every one more rather than continue the prejudices some of these researchers have already in their minds causing continued decision bias. The symposium stressed we need to all understand policy and law not being the highest standard of our thinking in strengthening our social relationships. Ultimately this will give us all a path in the right direction toward making objective decisions.
In my next 2 posts, I will further detail the ideas and plans the symposium participants talked about.
Parts 2 and 3 coming very soon,
Just saw you on PBS
Great post, Jason! Thanks for sharing your experience! It was very informative! I look forward to parts two and three!