Autism Research and Prenatal Testing
Salvador Dali, "The Persistence of Memory," 1931.
As originally posted, this page was a response to an article published on MSNBC.com on Feb. 23, 2005, in which Dr. Joseph Buxbaum, a prominent research scientist, predicted that genetic research on autism could lead to a prenatal test within 10 years. A countdown timer posted at the top of this page, entitled "The Autistic Genocide Clock," kept track of the time remaining in the 10-year period after the date of that article. A discussion of eugenics followed.
The world has changed considerably since then. It seems hard to believe now, upon rewriting this article in July 2011, that just six years ago many influential decision-makers seriously advocated eugenic eradication of the entire Autistic population -- a minority group estimated to include more than 60 million human beings worldwide. The mainstream media and the public policy discussions about autism became saturated with imagery straight out of medieval changeling myths. Autistic people were commonly described as empty shells, less than human, devoid of empathy, and incapable of contributing to society. Some public charities intentionally promoted these atrocious stereotypes as a strategy to gain more funding for genetic research.
But two things happened that derailed their plans to develop a prenatal test and to put it into routine use. First, the genetic factors involved in autism proved to be more complex than they had anticipated. Second, and more significantly, the public conversation changed. Autistic self-advocates and others who were concerned about its destructive tone launched efforts to shift the focus of the discourse. Policymakers listened, and the conversation moved into the realm of disability rights. The media became more aware of their ethical obligation to present accurate and respectful information about autism. The discourse began to focus on the actual needs of Autistic people -- community services and supports; better health care; and equal opportunity in schools, the workplace, and throughout society.
Although the cultural and political landscape has changed in many ways for the better since this page was created, the history of that time period should not be forgotten. It is a sobering reminder of just how quickly, even in a modern democracy such as the United States, media-driven mass hysteria can push any minority group to the brink of genocide. It also stands as a testament to the determined efforts of the many decent people who put large amounts of time and hard work into pushing back. We would be wise to remember the admonition, often attributed to Thomas Jefferson, that "eternal vigilance is the price of liberty."
More information about the neurodiversity movement and the circumstances under which it arose can be found by browsing the links shown below, which come from a database maintained on the Aspergian Pride website since December 2004 for the purpose of raising awareness of the civil rights issues relating to autism. The list includes a number of inactive sites that may have historical value. Also, here is a link to another site that discusses autism and eugenics.
- Aspergian Pride Celebrating the accomplishments and the inherent worth of autistic people
- Aspies for Freedom An international civil rights activist group
- Autistics.org: The Real Voice of Autism Civil rights advocacy and resource links
- No Autistics Allowed Michelle Dawson explores discrimination against autistics in Canada and elsewhere
- Institute for the Study of the Neurologically Typical A parody of autism research
- Autism Network International A self-help and advocacy organization
- Autism National Committee Promotes the right to self-determination
- Autistic People against Neuroleptic Abuse An advocacy group that warns against dangerous and unnecessary medications
- University Students with Autism and Asperger’s Syndrome Helpful information and advice for autistic students
- Proudly Autistic Autistic pride T-shirts, etc.
- Neurodiversity.com: honoring the variety of human wiring An excellent collection of resource links for understanding the concept of neurodiversity
- Multi Web Vista's Neurodiversity Page "Diversity is not just the way we look, but the way we think!"
- Word Spy on Neurodiversity Discussing the concept of neurodiversity
- A Place for All An essay about pride and the freedom to be oneself
- Becoming Real An essay describing the joys of being an Aspie
- The Kingdom of Laurentius Rex The website of a divergent thinker
- Reflections by elmindreda Writings discussing the autistic experience
- On Our Own Terms: Emerging Autistic Culture An article on the history of autistic culture
- Jim Sinclair's Web Site Personal articles and advocacy for autistic civil rights
- Curing Neuro-Bigotry "Autism is not a 'tragedy.' It is diversity."
- Why Label? An essay on autistic identity and challenging prejudice
- Celebrating Autistic Parents On the strengths and joys of the autistic family
- The Gifted Visual Spatial Learner An article about the educational needs of visual spatial learners
- Autism and Computing Discussion of computer-related careers and how computers benefit the autistic population
- Ventura33's Neurodiversity Page A discussion of autistic civil rights and a writing challenge on a Star Trek fanfic site
- My Little Rainman An autistic child’s mother describes her pride and joy
- Passing for Neurotypical What it’s like for Aspergian families “in hiding”
- The Hyperlexia Parents Network Helpful articles, success stories, and a discussion forum for parents of hyperlexic children
- rdos blog Discussion of neurological differences in information technology, as well as possible genetic origins of such differences, and an “Aspie Quiz” developed by autistics
- AWEtism A mother expresses thankfulness for her blessings; this site sells T-shirts and other merchandise with positive “AWEtism” messages
- The Autistic Distinction An essay on the need for social acceptance of neurological differences as a healthy and natural part of human diversity
- Whose Planet Is It Anyway? Blunt comments on civil rights, neurodiversity, and consciousness-raising
- The Autism Prenatal Testing Eugenics Programme A mother asks: Where is the public outcry?
- Neurodiversity Weblog Kathleen Seidel’s blog discussing her efforts to raise awareness of neurodiversity issues
- Ballastexistenz Amanda Baggs’ blog discussing autistic liberation and disability rights issues
- Neurodiversity Chain Letter A parent’s comments on developing a more tolerant and inclusive society
- Just let them be kids “My son and others like him are not defective…”
- Autiemom Speaks Out A mother's blog advocating social acceptance and respect for autistics
- Lindadiva’s Autism Rights Page A site discussing prejudice against autistics
- A Changeling’s Alternate Reality Story: Halloween 2005 A tale of becoming, in others’ eyes, something not quite human…
- Asperger's: making intelligence a disease A professor of psychiatry discusses the emotional harm done to many children by the negative social value judgments in medical and disability labels
- ASPIES--a place for self-advocacy Advocacy ~ Support ~ Pride ~ Identity ~ Education
- neurodiversity (idea) “The concept that variance in neurological structure adds needed diversity to the human race.”
- A Touch of Alyricism A blog dedicated to the equally fascinating topics of autistic advocacy and the sisterly sophistries of radical gender feminism
- Constructing Autism A professor describes autism as a social construct that arose in the context of the modern world's anxieties about environmental contamination and cultural and technological change
- Farewell to Holland A response to the widely circulated essay "Welcome to Holland" about raising a child with a disability
- Autist Art: Autism with an Attitude An online source for autistic pride and anti-cure merchandise, with links to autistic advocacy sites
- Neurodiversity: In Praise of Dappled Things An essay on appreciating the beauty of natural differences as a part of God’s creation
- Say it loud, autistic and proud A magazine article describing autistic activists' struggle to establish basic rights and to end prejudice and discrimination
- Susan Senator A mother writes about her emotional journey to acceptance and understanding of her autistic son
- Autistics Speak An article that challenges the disability stereotypes perpetuated by groups such as Autism Speaks and the resulting prejudices
- Autism's Edges A mother's blog on life, love, and learning with a child at the edges of the autism spectrum
- The Joy of Autism A mother's thoughts on family life, society, and disability
- We Go With Him A mother’s blog about life with her autistic son
- MOM - Not Otherwise Specified "On raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction"
- Autism Hub A group of autism-related blogs written from various perspectives
- The Voyage A mother's blog about life, family, home-education and autism
- Autism - Natural Variation Dispels crackpot theories of autism, criticizes questionable treatments, attacks stereotypes and demeaning descriptions, and highlights good science
- Abnormaldiversity A blog opposing neurological discrimination and asserting the value of all human beings
- Hard Won Wisdom A mother writes: "As a parent and teacher... here is the blog never around when I needed it. I hope it helps!"
- Simul Iustus et Peccator A blog that addresses a variety of issues related to neurodiversity, disability rights, and gender identity
- Andrea's Buzzing About A blog that discusses autistic human rights issues from a social theory perspective
- The Autism Acceptance Project A Canadian nonprofit group that seeks to tap into human potential and dignity
- Aspies Inc. Is Asperger Syndrome a disability or a gift? YES.
- It's All Okay A mother writes: "Our future is bright and promising. This beautiful child grows and reaches new heights every day. Yeah, he's not typical. But is that really such a terrible thing?"
- My Quirky Boy A mom writes about her life with her three-year-old son, who "has Autism, and that is not a bad thing, it does not mean that there is anything wrong with him, or that he needs to be fixed"
- Autistic Pride Day Blog Photos and stories about two beautiful and proud young autistic dancers who perform to raise awareness of neurodiversity
- The Face of Autism The first five years in the life of "a wonderful, exuberant, mostly non-verbal boy with autism"
- Jared at the Park A father's view of his "beautiful boy" running around and playing
- What are they thinking? The blog of a proud mother of six children, five of whom are autistic
- The Autism Acceptance Project Video A video celebrating the lives of autistic artists and people
- The Autism Life Resources and a discussion forum to help parents, caregivers, family, and friends learn about autism
- Beautiful Child The story of an autistic boy and his family learning and loving and growing together... a story of acceptance for all children regardless of labels
- Life in the New Republic A mother describes her life with an autistic son and how she finds the Jedi philosophies of Star Wars to be useful
- Autistic Self Advocacy Network A nonprofit organization run by and for Autistics, seeking to advance disability rights principles with regard to autism
- Whitterer on Autism A mother comments upon the more humorous aspects of keeping company with autistic children
- Incorrect Pleasures The blog of an autistic stay-at-home mom who collects interesting facts and figures involving autistic culture and other related themes
- How to Spot Bias in Research In a column written for the Association for Psychological Science, Professor Morton Ann Gernsbacher points out how research on autistics and other groups is often biased by unfounded assumptions
- Meow meow meow, blah blah blah TR Kelley's blog about neurodiversity, cats, and random acts of kindness
- In My Language A video about different ways of interacting with the world
- Gestalt An autism and psychology discussion forum
- Club 166 Where a dad of two great kids (one on the autism spectrum) muses about life
- Mom Embracing Autism The blog of a busy homeschooling mom of 4 children, one of whom is autistic
- Existence is Wonderful A small piece of the universe observing itself
- This Is Who I Really Am An autistic blogger who signs herself "unashamed" writes about her love of life
- Asperger Square 8 “We all have labels, acknowledged or not, because the world has an unmanageable number of facets…”
- One Dad's Opinion A father writes: "I have three cherished sons, two of whom are autistic, and this occurrence in my life has opened my eyes to the sometimes wonderful, always interesting world of autistic perspective."
- Life With Joey A mother of "two lovely boys, one with autism" shares her experiences
- Astrid's Journal A young woman who is blind and autistic blogs about disability rights
- Autista A blog about a father's attempts to be useful to his eleven-year-old son who has an autism diagnosis
- An Autistic Speaks About Autism Speaks A "Daily Kos" article from the neurodiversity side of the autism debate
- Society for the Prevention of Autism Prevention An autistic university student blogs about her life and thoughts
- Dr. Morton Ann Gernsbacher's Laboratory Autism and language comprehension research articles
- And Stimming With Rainbows of Every Design The blog of an autistic teen who wants the world to become autistic-friendly
- My thoughts on... An autistic woman blogs about her advocacy work and future research in the field of autism
- Biodiverse Resistance A blog "in defence of biodiversity in all its forms, liberty, equality and the freedom to be different"
- It is not a disease, it is a way of life A news article about the campaign to celebrate difference, rather than cure it
- humans A website advocating for, and providing information to, people on the autistic spectrum and their friends and families
- D and DJ's Weekend Two autistic boys who communicate with keyboards become close friends
- An Unauthorized Neurotypical Thinks and Feels Among Boxes A girlfriend of an Aspie contemplates neurodiversity issues and what it means to be normal
- Liv's Journey A father describes his life with five children, two of whom are on the autism spectrum
- First signpost late in life The blog of a recently diagnosed Aspie who describes himself as "happy, healthy, well employed and married to a woman that I love very deeply"
- You and Your Quirky Kid In a Newsweek article, a mother expresses her concerns about modern society's labeling of children's differences
- Mother of Shrek A mom blogs about her hope for a more understanding and accepting world
- Stop. Think. Autism. A mother advises other parents to stop and take a deep breath -- autism is not the end of the world
- Autistic Civil Rights A look at the rights and dignity of autistic individuals
- Reports from a Resident Alien A journal exploring the experience of being autistic in today's world
- Odd One Out Reality with a refreshing slice of aspie
- Autism All the Time A blog by an autistic self-advocate who wants to become a teacher
- El's Mystery A site describing an autistic musician's work and his view of the world
- The point of view of an Aspergian A blog about autistic pride and civil rights
- Aspergers Parallel Planet A resource and discussion site for autism spectrum differences
- Left Brain/Right Brain Kevin Leitch's site for autism news and opinion
- The Truth about Autism: Scientists Reconsider What They Think They Know Wired magazine reports on the autistic rights movement and how it is influencing research
- Loving Lampposts Information and a trailer for an independent film about autism and the neurodiversity movement
- Sheila Schoonmaker An autistic woman shares her thoughts on Aspergian culture and her Christian faith
- Aspie Mama A blog about the experiences of an Aspergian mother
- dkmnow The blog of a 40ish midwestern spectrumite, informal student, volunteer and e-activist
- Turtlemoon “a difference in mind doesn’t make someone less human. It makes them worth listening to.”
- Neurodiverse Thinking A blog discussing current issues in the autistic rights movement
- Neurodiversity A 12-year-old autistic boy seeks "unfailing respect for the individual"
- Cat in a Dog's World Thoughts on autistic self-advocacy from an autistic cat lover
- Life with Aspergers A blog focusing on the positive aspects of the condition
- Autist's Corner The dark alley where feminism, autism advocacy and literary criticism meet
- You and Me Against the World A mother fights for acceptance of her autistic child
- Memoirs of an Autistic Dwarf Fantasy battles and real-life civil rights struggles
- Aspie Rhetor Discussion of autism, rhetoric, and other issues
- Aspitude! A blog seeking to promote a better understanding of the needs of autistics
- No Myths Public service announcement seeking to dispel autism myths
- Model Aircraft Museum 100% pure Autistic expression, by and about
- 41 seconds: Autistic Awareness Autistic speech processing differences illustrated
- Infinite Diversities "I am a person first. But my autism doesn't come second. It prefers to be with me at all times."
- AS Parenting Autistic parent forum and blog promoting healthy family relationships
- Rethinking Autism Videos ridiculing celebrity exploitation of autism
- Normal is Overrated Musings and meanderings on the autistic spectrum
- Academic Autistic Spectrum Partnership in Research and Education Community based participatory research project focusing on the perspective of autistic adults
- Autism as Academic Paradigm A professor criticizes prejudiced attitudes and discusses autistic competitive advantages in academia
- Comet's Corner An elder within the autistic community reflects on his experiences
- Prism*Song A blog with autitude, mixing fantasy fiction and autistic community issues
- autismherd A mother celebrates and finds joy in all of her children
- Shift Journal of Alternatives: Neurodiversity and Social Change Speculative articles on social and evolutionary changes as they relate to autism
- Cracked Mirror in Shalott Blog of an advocate and writer who loves history, progressive politics, anthropology, Doctor Who, and randomness
- I Am Autism Autism truth from the inside looking out
- Embracing Chaos A mother of three writes about faith and the meaning that underlies the appearance of chaos
- Falling into Place A mom on the spectrum finally makes sense of her life
- Diversity is Beautiful ...neurologically unusual people deserve to exist like everyone else
- Disability Studies Quarterly, Vol. 30, No. 1 (2010) Special issue on autism and neurodiversity
- Autism Reality A documentary film featuring interviews about the autistic experience
- Paula C. Durbin-Westby Autistic Advocacy Blog Writings and presentations (or links) to autism/autistic advocacy work
- Perseveration in the Workplace Some people just can't stop talking about...
- Autism Women's Network Providing effective supports to autistic females of all ages through community, advocacy, and resources
- Being Nearly Human An autistic blogger seeks to understand consciousness, life, human behaviour, and "normality"
- Journeys with Autism A woman who discovered her autism later in life shares her journey
- Autistic Speaks Not despite autism but because of it
- Welcome to Normal, Population: 0 Packing up old prejudices, preconceived notions, and unrealistic expectations
- Radical Neurodivergence Speaking About autism, epilepsy, ableism, sexism, activism,other -isms, intersectionality, & other things
- An Exploration of the Neurodiversity Movement An article discussing the neurodiversity movement and its social implications
- Katy Doesn't Live In Smithton Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure
- Autism and Empathy This site exists to undo stigmatizing myths about autism and empathy
- Neurotypical What is the standard that identifies one person as whole and capable and another as disabled and broken?
- Autistic Passing Project Anonymous people on the autistic spectrum describe the pressure to pass as non-autistic
- Just Stimming… On disability, disability justice, and growing up and living as an Autistic girl
- Illusion of Competence A blog about disability in society, the media, and history
- Changing perceptions: The power of autism A researcher advocates describing and investigating autism as a variant within the human species
- Autistic Hoya A Georgetown University student blogs about disability issues and the autistic community
- Moonlit Lily An autistic woman from Latin America seeks to communicate with the world
- Navigating College Advice from self-advocates for college students on the autism spectrum
There currently are 167 links in the database.
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