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I am an extremely demanding woman. I have to be. I'm fighting for my son's right to personhood and his right to live his life qualitatively better than what is dictated by those who profess to know what autism is and what he needs without making him and those like him part of that conversation. A half-measure is not enough.
It is as if some major media outlets have a formula for dealing with the disability rights movement in the autistic community and this article is an excellent example of that disturbing formula. These are the ingredients in the recipe for dismissing and derailing autistic civil rights as a movement:
Recipe for Erasure By Implementing Structural Ableism:
Skew the term Neurodiversity so its meaning is conflated with a social group and hobby for quirky geeks. Make certain to stretch that veneer tightly over the group you wish and entrap them in the misrepresented term.
Present the entire history of disability rights movement in the autistic community as beginning with the foundation of The Autistic Self Advocacy Network (ASAN) thus erasing every activist who is an adult over the age of 30 and polarizing the autism rights community not involved with ASAN. Bake that at 400 degrees. Divide and conquer
Dismiss disabled disability rights activists as "quirky, nerdy, weird, highly functioning mavericks" this reduces the threat that they may be more intelligent than is wanted.
Dismiss major accomplishments by focusing on small ones like changing verbiage to satisfy those darned "neurodiversity" people
add a pinch of clinically depressed crusader parent who hates her life and anthropomorphizes and demonizes autism to feed a heavy digital exhibitionism habit (see my previous article on other crusading people)
Be sure to erase nonspeaking autistic people by the exclusion of their voices! Including them would dismantle the pinch of crusader parent's argument that "real autism" doesn't speak and therefore isn't any good to society.
Don't forget to also add a pinch of the word Autism Speaks - branding Autism Speaks as the enemy of Neurodiversity is critical so it appears legitimate by comparison
Do not discuss autistic culture even when it is clearly presented because that would be acknowledging such a thing exists
exclude any person who is not white from the conversation because we all know that only white people are autistic? Only what white members of the community say matters?
Result? A beautifully derailing, non-article that presents autistic adults who are doing autistic pride and presenting themselves publicly at great personal risk as fringe disabled people who need tolerance but are misguided.
Some Good In the Mix
The good parts of this article? It was great to see autistic activist Alanna Whitney there. New faces to the public are a good thing, and she was eloquent in her presentation despite the article's attempts to present her as quirkily and as oddly as they could. The term NeuroQueer appeared in a Washington Post article, a very big milestone for the movement and I hope they saw that despite the attempt to present it as a fringe group to a fringe group. Steve Silberman was quoted and his book "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity" was mentioned. Now back to what truly concerned me or just was very, very odd.
John Elder Robison As The Neurodiversity Authority
I am still trying to wrap my head around John Elder Robison being cited as a topic expert on neurodiversity. I could fill pages with the activists who have worked from the time before I was born, and I'm 54, for the human rights and civil rights of autistic people, and who will never be recognized for their contributions. Mr. Robison is a recent convert and was made a neurodiversity scholar in residence at the College of William and Mary in Williamsburg, Va. after Asian American Autistic Activist Lydia Brown was invited to William and Mary to explain what neurodiversity was and its importance in disability rights. Mr. Robison is a quick study and has learned a great deal. But the sad fact is that his fame allowed him to simply step from his prior role of years at Autism Speaks to this new role. In the process many activists, who did not become activists to be famous, who are not white, who are not cisgender, are silenced. Mr. Robison can't speak for them. Only they can speak for themselves. If NeuroQueer was going to be mentioned, then an activist who was NeuroQueer should have been quoted. If neurodiversity was going to be addressed, the first thing any scholar on neurodiversity should have done was correct the misconception that neurodiversity is solely an autism-related term and refers only to the autism rights movement. Neurodiversity must be properly defined. This conflating is harming the progress of a greater movement for civil rights.
Conflating The term Neurodiversity's history with ASAN
The term 'neurodiversity' pre-dates the foundation of ASAN. It is a term that refers to a larger group of people than autistic people. The movement for autistic civil rights and personhood began prior to the existence of the internet. But deliberately conflating the term neurodiversity with ASAN divides the community and that is the goal.
Presenting Clinically Depressed Parents as Autism Activists
The Washington Post sees no harm in using Ms. Stagliano, an extremely unhappy mother of three autistic young women with intense support needs, as a polarizing figure to up their hits on both this article and the one she wrote before about Autism Awareness Month, which they clearly feel they can squeeze a few more hits from. I am always horrified at what Ms. Stagliano is willing to allow to be published about her own daughters to further her crusade to make everyone believe that her experience of autism is the only one that matters. Her huge platform and too loud voice have done such great harm. Yet she is continually given the opportunity to shout her message of doom and woe to all who will hear.
In this case, the Post again mentions her role in meeting her daughters' personal care needs from her previous article that may again violate their rights under HIPAA. Please see my article on Digital Exhibitionism in the Internet age here, explaining why these types of disclosures are concerning and inhumane. Depressed parents of autistic adults who have not kept up with new assistive technology, medical services that can increase autonomy by reducing or eliminating certain types of personal care needs for disabled adults are out there. Ms. Stagliano's religious beliefs may not allow certain medical supports for her daughters. Given Ms. Stagliano's lack of concern for their privacy and since according to her own rhetoric, they are not able to give consent, I cannot speak to that much more except to say that if she got some treatment for her depression and sought out organizations like the Autism Women's Network, she might learn that her daughters can live autonomous lives after her passing regardless of their degree of disability and despite her misconception that because their needs are intense, she is the most important person in their lives.
She spends so much time writing about how awful her life is that I am assuming she has more respite than she is presenting to others. There is no way one can spend as much time online and involved in all the activities she is involved in with 3 disabled young adults to care for unless she has these supports. Most of the families I advocate for just don't have the time to demonize autism to this degree because they have no respite and are too busy caring for their loved ones and fighting for their futures to crusade for a cure of their parental unhappiness by creating an autism boogeyman and making it a medical monster that continues to frighten parents into not vaccinating their children.
I am always concerned when I see the amount of time Ms. Stagliano spends on this topic. With three young disabled women to care for, sleep deprivation must be a real concern. That lack of sleep interferes with executive function and over time can lead to disaster. There are other parents who get sufficient rest, have proven track records of legislative and community advocacy that have improved the lives of autistic adults, children, and families, who might be better alternatives to present as parent activists. Simple rule. If a parent hates their life, they aren't really going to be the best resource for discussing how to be a life coach. It is responsible journalism to find resources who are experts on their topic through training and education as well as simply giving birth to a disabled child, balanced in their views, and logical in their presentation of facts. The Washington Post knows about the recent outbreak of the measles and other preventable childhood diseases. Yet they present a mother as an autism authority who leads a large community in crusading against autism with the idea that vaccines cause autism and autistic people are vaccine injured.
Opportunities Lost In Translation
So there is Steve Silberman with a 400+ page book on the history of the neurodiversity movement and no brief timeline of history prior to ASAN is mentioned or illustrated in this article. Why not? Why was the story of Alanna Whitney and a chapter of ASAN turned into a stereotypical view of autistic adults in the movement being quirky, using verbal speech, presenting as 'highly functioning' people? Human rights should never be presented as a social science experiment that became a nonprofit.
Someone should have been allowed to say that Autistic people are fighting for their existence and acceptance as equal members of society. The autism rights movement is part of the greater disability rights movement.
Then there is the statement in the article:
"Neurodiversity advocates, by contrast, consider people with autism a minority group, albeit one with extra challenges that might need accommodating. They compare themselves to the gay rights movement and to the protesters trying to improve police treatment of African Americans."
Wow. Dear Ms. Somashekhar: The movement that predated and gave rise to the gay rights movement was called the Civil Rights movement. You might want to google that. All those protesters you're mentioning, they are this generation's civil rights activists. What you took away from the #BlackLivesMatter movement, which is a small fraction of a decades-long struggle for Black civil rights equality is "the protesters trying to improve police treatment of African Americans?" Over 600 deaths and you dismiss a human rights crisis in half a sentence? This is about the lack of accountability. This is about no one giving a damn when our people are shot by those who are supposed to keep us safe. This is about video footage of horrific crimes against Black people witnessed globally and the World seeing that justice in America doesn't exist for people who aren't white and wealthy. Now this has escalated to targeting predominantly Black churches and the innocent worshipers in them and you present all that as a 'profiling while black' thing? My what a social change reporter you are.
Statements like "They compare themselves to" imply that disabled people have no legitimacy to declare their own personhood. I grasp that by definition journalism must present things in as unbiased a fashion as possible. But damn. All disabled people have the same rights as everyone else. The twenty-fifth anniversary of the Americans with Disabilities Act has clearly blown past the Washington Post and left no understanding that disabled people have been succeeding in fighting for their right to take an active, central, and inclusive role in society for more than 100 years. This isn't a hobby for quirky people. This is civil rights movement. Until a major paper can give it that respect, we will not succeed in educating against ableism.
We need to stop allowing Neurodiversity to be displayed as the thorn in the side of Autism Speaks
This dichotomy really is giving Autism Speaks free advertising and also allowing people to bring it into conversations where it does not belong. We need to correct the definition of neurodiversity. We need to establish clearly what the autistic disability rights movement is and explain that disabled people across communities are fighting for survival and personhood in a society that others them. That is the job. Everything else confuses and confounds the conversation. This isn't about Autism Speaks. It is about Autistic activism.
Okay, I need to stop. My nonwhite, nonspeaking, intensely disabled and awfully wonderful tween son is hugging me and telling me it is his time now.
2. Reconstructing Disability Within A Neurodiversity Framework by Lydia Brown
3. What is NeuroQueer? by Michael Scott Monje Jr
4. Neuroqueer Rhetorics: Gazes, Spaces, and Relationships Dr. Melanie Yergeau and Michael Scott Monje, Jr (includes pdf of talk and resources)
5. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
6. About Black Lives Matter