4.16.2018

#SaidNoMother: Autism "Awareness" At Its Worst

It's April, that annual demonstration of how autism "awareness" can be used to hurt people like Leo. When autism awareness is deployed as a weapon—especially without autism understanding or acceptance—it enables hateful crusades like the recent anti-vaxxer autism martyr parent #SaidNoMother parade of self-congratulatory ignorance.

I already wrote about how much the performative victimhood of #SaidNoMother parents appalls me. But, as the campaign wore on (and repeated the same tweets and images ad nauseum), more countering was needed: People need to know that this crap is not acceptable.

The #SaidNoMother crew themselves seem unlikely to have epiphanies about doing right by their autistic kids any time soon, as they are mostly vapid white women of a certain class and certain inability to believe that money can't buy happiness. As I am a member of such a census category, it my duty to call out my kind when they embarrass us all in their clueless unexamined privilege: Not only regarding the irony of speaking out about vaccines when they have no experience with vaccine-preventable diseases thanks to growing up in a vaccinated cocoon, but also because they don't seem to realize that not all families have the funding to pursue expensively bogus autism "recovery" pseudoscience. And by their polluting of those autism information waters, they may lead people who don't have financial wiggle room to make choices that endanger their autistic kids' health and well being, as well as their families' economic health.


The #SaidNoMother mob is also shameless in their attempts at shaming. They told outright lies (like nonsensical "sleuthing" into my background?), and one even got her autistic kids' sibling to tell me that I'm mean for "bullying their mom." Disgusting.

It's frustrating to engage with people who are not just vehemently willfully ignorant but have ends-justify-means mindsets, as you can see in the collected tweets below. (Eventually the zealots blocked all their critics, so apologies for any missing tweets that jar threads out of context.)






















































































































































BROUGHT IN HER DAUGHTER FFS





















[image: Tweet from Dianne Thompson @djt10, reading "Autistic people don't
exist for your abuse" you say. They apparently exist to abuse others, according
to the behavior of you and yours who claim to be autistic as an excuse to batter
victims, caretakers and their supporters."]
















at No comments:
Labels: , , , , , , , , , ,

4.02.2018

How You Can Honor World Autism Acceptance Day

[image: Me and my three kids sitting on a bench in a San Francisco park
in 2015, eating ice cream and enjoying each other's company.]
People all over the planet are observing World Autism Awareness Day today. My autistic friends and my family, however, prefer to follow The Autistic Self-Advocacy's example and observe Autism Acceptance Day.
Why acceptance? Because autistic people like my teenage son Leo deserve the love and respect that come with acceptance, not merely acknowledgment that autism exists. Awareness is passive. Acceptance is a choice.
Here are ten ways you can honor Autism Acceptance Day, and autistic people of all ages:
1) Honor communication. Everyone communicates. That includes autistic people of all abilities. If your autistic loved one struggles with spoken language, the best action you can take in their honor is to help them find a communication system that works for them, whether scripted speech, typing, a symbol-to-speech device or app, sign language, or a letter board.
You also need to understand that an autistic person’s spoken words may not accurately represent what they’re thinking, or their intentions. When my son jumps up and sings “The cold never bothered me anyway!” at me, I understand he's telling me that his current environmental temperature needs to change. If he asks me to repeat phrases after him, he's asking for reassurance.
Autistic communication isn't necessarily verbal or language-based; sometimes communication happens through behavior, like a child refusing to get out of bed, or being upset with routines that usually comfort them. It's important to pay attention to this kind of communication; while it may be a show of independence, behavioral changes can also be an autistic person's only external sign of illness.
Also honor autistic ability to participate in communication. My son, like many autistic folk, takes a few moments to process spoken words. But he understands most everything people say to him. There is no need to talk to him in a sing-song voice, or speak extra slowly. Besides, where is the harm in talking to him like you would any other teenager?
2) Honor competence. Recognize the things your autistic loved can do, and encourage them to do them. Have patience if the learning takes a bit longer than you might expect—autistic kids' legendary ability to “suddenly” do things like read or ride a bike is often the result of extended practicing, even if, at the time, it seems the practicing wasn't clicking . So please try to avoid doing things for your kids that they are willing and able to do for themselves. Their independence and sense of self-worth need to trump your momentary convenience.
And don't forget to presume competence. This doesn’t mean you should assume every non-speaking autistic child is a hidden genius; it means you should always treat every child like a worthy human being. It means, as the autistic writer/self-advocate Julia Bascom tells it, remembering that:
"...talking about someone in front of them, dehumanization, infantilization, segregation—are wrong to do to anybody. There’s not an IQ threshold for being treated with respect, for being included, for being treated like a person.”
3) Honor interests (even if you think they are age-inappropriate). So what if your teenager loves watching Curious George, or your eight-year-old only wants to talk about forensic pathology? Seriously, where is the harm in encouraging such interests if they make your autistic child or loved one (or self) happy? As autistic advocate Lydia Wayman writes,
"I am finishing my Master’s degree in English and creative writing, yet I cannot cross a street without help, struggle with independent living skills, and possess a strong affinity for anything Disney or Hello Kitty. This spike-and-valley development may be atypical for most people, but it is a totally typical way for an autistic person to develop and sets the stage in each individual for the culture we build together."
4) Honor sensory needs. Many autistic people's senses are more finely tuned than a non-autistic person's hearing, smell, or sense of touch. Noises that don't bother you if you aren't autistic may be unbearable to someone who is. Other people's perfume may feel like chemical warfare. Being in a crowd may feel like drowning. These perceptions are very real, so consider that if you refuse to acknowledge or accommodate autistic sensory needs, you are essentially torturing a fellow human being.
5) Honor executive functioning difficulties. Autistic people often struggle with organization, sequencing, problem solving, and other executive function (EF) skills. So do everything you can to support your autistic loved ones in this area, by helping to develop supports such as checklists or visual schedules. Further EF accommodations can include eliminating simple barriers in the home, like installing towel hooks instead of towel bars, using open laundry bins instead of ones with lids, or storing dishes in a lower cabinet instead of an upper one. Small changes like these can make big differences in the happiness and functioning abilities of people you care about (or, again, your own self).
6) Honor anxiety. The world is not usually a friendly or accommodating place for autistic people, given some of the topics mentioned above, so it's no wonder that anxiety is such a common co-occurring diagnosis for autistic people. It's also one that needs to be taken seriously. Please do what you can to respect an autistic person's verbal declarations or behavioral indications of anxiety; your consideration can make the difference between an autistic person getting through their day, or having a meltdown. Which brings us to the next topic:
7) Honor routine. Autistic people like my son can find comfort in routine, whether it's visiting the same restaurant as a family every Saturday, or using the same series of steps and scripted phrases to get dressed in the morning. As far as many autistic people are concerned, anything different is bad, and a source of stress. Especially surprises.
If things need to change, do what you can to make the transition easier, in the fashion that works best for the autistic person in question. Would a custom "social" story about the transition help? Or would they prefer to ask you, every few minutes, to repeat the same scripted details about the upcoming change? Again, do what you can to accommodate, especially if that autistic someone is dependent on you.
8) Honor autistic role models. There are so many autistic people online being proud and fearless. Learn from them, bow to them. A very incomplete and haphazard list includes Ruti Regan, Mel Baggs, Ido Kedar, Morénike Oniawu, Paula C. Durbin-Westby, M. Kelter, Julia Bascom, Emma Zurcher-Long, Lynne Soraya, Lydia Brown, Judy Endow, Amy Sequenzia. John Elder Robison, Max Sparrow, and Emily Paige Ballou.
9) Honor the undiagnosed autistic people you already know. We know that autistic people have always been here, that most of the increase in autism rates has to do with changing diagnostic criteria to include more people, and that women especially often go undiagnosed. This means that the current CDC autism estimate of 1 in 68 people is probably too low. This means you likely have more autistic people in your life than you officially know you do.
So try to show respect and kindness rather than irritation towards people who, for example, you'd otherwise think are one-upping you when you tell them about your experiences and they reciprocate by telling you about their own related experiences—as such reciprocation is a very autistic way to empathize. Smile and nod and try to honestly listen to the little girl who wants to tell you about every possible gem category and the subtle differences between them. Kindness and courtesy rarely cause harm, after all.
10) Honor autistic people as their own unique selves. Do not disrespect them by trying to view them as flawed, or potential, non-autistic people. Do not be surprised by or resentful of autistic adults who have gained more skills than your autistic child currently possesses. Do not talk about autistic people having less mature minds in more mature bodies. Do not try to cajole them into doing things that cause them distress, like going to loud parties or talking about whether there is an autism epidemic (again, autistic people have always been part of human society). Just show some respect by trying not to impose your non-autistic sensibilities onto them.
Because autistic people are, again, individuals. Treat them that way. Accept that some may possess a wicked sense of humor, but totally miss others’ reciprocated (or retaliated) humor or sarcasm. Accept that some function best with noise-canceling headphones at school and work. Accept that some autistic people loathe hugs. Accept that some autistic people crave hugs. Accept that some autistic people may enjoy skipping as a form of locomotion whenever possible. Accept that your preferences may surprise them, and their preferences may surprise you.
Accept. Accept. Accept.
at No comments:
Labels: , , , , , , , ,

3.26.2018

#SaidNoMother: A Wretched Hive of Scum and Villainy

“I will only dwell on what my #autistic child *can’t* do, #saidnomother 
[image: Leo, seen from behind, happily hiking on a verdant oak woodland trail.]
[Content warning for parents saying dehumanizing things to and about autistic people, including their own children. Also lots of autism pseudoscience.]

I haven't had to address the anti-vax Autism Mommy contingent for a long, satisfying while. After the 2015 Disneyland Measles outbreak, the world wised up to the fact that vaccine-preventable diseases were real and deadly, and that vaccines make them go away—and also that established science proves vaccines have nothing to do with autism. Which, no of course I didn't want diseases to resurge, but yes I am glad that I can focus on autism acceptance, education, and rights, instead of spending my time countering willfully, dangerously ignorant people who think having an autistic child like Leo is worse than having a child die from a preventable disease.

But there is still a small, angry, stewing knot of those awful autism-vaccine causation parents lurking on the social media fringes. And their latest effort is the loathsome #SaidNoMother campaign, bewailing all the ways in which the parents "suffer" by having "vaccine injured" kids. The pseudoscience bombs those parents lob about their children are dehumanizing, so dive in at your own risk; these people have no sense of their children as deserving, valuable human beings.

Because Twitter doesn't weight its hashtagged tweets, it may seem like this campaign is huge. But please know that, as an associate tipped me off, it only has one-seventh the impressions of a non-pseudoscience hashtag like #VaccinesWork. So, big hashtag/little pond. And many of those impressions are due to Autistic people and like-minded individuals taking on and infiltrating the hashtag, because even though #SaidNoMother is not trending that much, it's still really f***ing distressing and needs all the countering the Neurodiversity community can muster.

Since Twitter is so ephemeral and scattershot, it's hard to get a sense of how this scenario is playing out unless you experienced it in real time. Or, you know, unless you archive the tweets in a timeline. As I have below. Because so many of the people I countered blocked me, my responses might not make sense—but if they haven't blocked you, you can click through to their linked tweets for context.

If you care about autistic people like Leo and cannot stand to see autistic people used as collateral damage by pseudoscience-embracing martyr parents, please feel free to RT as many of the entries below as your clicker finger can stand. I included a LOT of links debunking just about any nonsense theory or concept they tried to throw at me, plus as many links to helpful resources as I could squeeze in. Because I hope that at least some of these parents, or the people who listen to these parents, will read what was shared, and consider what their children need from them, instead of waging a fruitless war against their own child's neurology.



















Blurring & anonymizing courtesy Jay Edidin
[image: Photo of a mom kissing her child, whose
face is blurred out. A superimposed white text box
reads, "I can't wait for my 8 year old's diapers to
be delivered, said no mother of a vaccine injured
child, ever. #SaidNoMother.]


















































[image: Screenshot of a tweet from @TannersDad, featuring
a man with a black eye looking at the camera. The tweet reads,
"Let's have a real discussion this April. #ABA Autism Beyond
April. New movement of Mothers Fathers Grandparents Siblings
Rising Up above the noise of Pharmaceutical Propaganda explore
the truth Revolution Breaking MSM Silence
#SaidNoMother #SaidNoFather.]
at 2 comments:
Labels: , , , , , , , , , ,

3.01.2018

To Siri, With So Much Disappointment

To Siri With Love author Judith Newman and her son Gus
[image: A white woman with long curly dark hair, snuggling with her teen
son, who has short dark hair, next to an image of the book To Siri With Love.]
It took me a long time to read Judith Newman's autism parenting memoir To Siri With Love, despite the author herself courteously sending me a copy. I had to nudge myself to keep going, because I don't like reading books that treat autistic people as inscrutable annoyances. I also dragged my feet due to more personal preferences: books written in breezy airport-bookstore-ready voices are not my thing, plus Newman's sense of humor put me off: Getting a discount on a hotel room because a kid was recently eaten by an alligator onsite is not amusing to me, for instance.

Others, including autistic writer Max Sparrow, have written extensively about why To Siri With Love is flawed, and you should read what they have to say. Because I'm not alone in noticing that one of the primary problems with the book is that, when it talks about autism, it recycles outdated and stigmatizing cliches. Despite the two years since the award-winning neurodiversity explainer and history NeuroTribes was published, and despite Newman being a journalist, To Siri features common misconceptions, like insisting all autistic people lack theory of mind (long-established research clarifies that the issue is actually one of “double empathy,” in which negative assumptions from non-autistic people about autistic people are most of the problem).

I am also put off by how little respect Newman's shows for autistic people. She writes passionately about how much a specific autistic adult needs support and understanding and (correctly) how badly society and systems have mistreated him—yet reveals second-hand information about his bowel habit demonstrations of distress. This actual lack of theory of mind is even more confusing given that Newman wrote Siri in part to bring more attention to non-genius autistic kids like her son Gus (who seems like the most awesome young man ever), a group she considers underrepresented. But, as as comedian and filmmaker Hari Kondabolu says in talking about minority representation in general: it can’t just be about the stereotypes; it has to be about recognizing real-life diversity and humanity. Yet Newman does nothing to expand autism understanding, bust negative autism stereotypes, or further her son's humanity; if anything To Siri With Love mostly illustrates how much her son's autistic traits annoy her.

I think Newman has failed her son by writing this book. I think her book will make life harder, not easier, for autistic people including but not limited to both our sons. Because when it comes to the treatment of autistic people, the entire world is essentially bigoted bullies and complicit bystanders. Instead of defending her son, Newman has joined the side of the bullies in declaring, “Well yeah, I love him but I get your point and actually I agree that he’s weird.”

This deeply messed up attitude needs to be called out. While it’s common if not OK for parents to be ignorant and bigoted when they come from outside a community, once you find out your own kids are part of a margnialized community you are supposed to be like Amy Acker's mom in Marvel’s X-Men-adjacent series Gifted, and get 100% on your kid's side and do whatever is necessary to protect them. (I’m not recommending going on the lam, but allying with and learning from your kids’ community? Yes, that is actually a very good idea.)

And you certainly don’t join the world's bullies in smacking down all the other autistic people who come to your kid's aid because they are part of his community and get how much being bullied hurts. Instead, you ask your kid's people—who may not be exactly like your kid but surely understand what it is like to be constantly treated like subhumans yet survive—how they did it. You learn from them. Because you and those autistic people? That particular Venn diagram is all your kid has. It should be you, Autistics, and your kid against the fucking world.

This is why it is so infuriating and hurts so much to have a mainstream author like Newman choose the side of conventional shitty attitudes about autism and autistic people when her kid needs so much more from her. Yes, changing one's deeply ingrained negative assumptions about autism is hard. Yes, it's harder when society reinforces those assumptions. But if you’re the parent of a child from a minority group yet you yourself represent and have direct connections to high-profile media channels, and you not only shirk your power and waste the opportunity to change minds but then belittle and dismiss and sabotage your son's autistic community members for having opinions about your harmful book and the people it is hurting, including your own kid? You kind of suck.

People need to be aware that, despite Newman's insistence otherwise, autistic people generally don’t think they know autistic kids better than those kids' parents do. But autistic people assuredly do know what it’s like to be an autistic kid in a way non-autistic people never can. They have logical explanations for matters Newman considers autistic mysteries, like why autistic people have meltdowns over things that make no sense to outsiders, and why those meltdowns are not manipulative tantrums. They understand why Routine is Life. They understand that it's fully possible to have phenomenal skills in some areas while also having serious disabilities. They understand why training autistic kids like they're sea lions may result in some compliance and changed behavior, but it also results in kids being traumatized and not trusting their own right to say "no." They understand that when parents like Newman contradict autistic experience on these matters, and in doing so influence other parents to dismiss autistic insights, those parents' collective autistic children will suffer.

To Siri With Love also lacks informed empathy. If Newman had spent real time researching the history of reproductive rights for people with disabilities, she would have known that her blithely casual “maybe I will sterilize Gus, maybe I won’t” attitude reinforces the life-destroying notion that disabled people shouldn't have agency over their own bodies. Yes, she includes a few obligatory citations in related history. But her tone and sources omit the core histories of Black, disabled, and other marginalized communities, including why is it so inhumane to have had their reproductive rights forcibly stripped away. As Kerima Çevik writes, "Forced sterilization is part of a larger nightmare of systemic abuse of the black body we've survived but can't forget." Self-engaged and shallow approaches like Newman's, in my opinion, contribute to the ongoing atmosphere that allows the reproductive rights of people with disabilities to remain under attack.

People like Lydia Brown have already criticized how awful it is for Newman to muse about her son’s sex life, and equate it to a Benny Hill film, as though being autistic somehow turns sex farcical and fictional (she also once again disregards her son's privacy and dignity). I can't help but wonder: If she's so concerned about her son's sexuality, why she doesn’t include helpful information about sex ed for people with developmental disabilities, avoiding learned compliance, or the increased rates of sexual abuse of people with disabilities? Anyone who has ever read The World According to Garp is aware that that sexual abuse of people with disabilities is not limited to women.

Newman has heard most of these criticism before, and was not pleased by them. And here's my final disappointment: Instead of listening, she went on the attack against her son's autistic brethren and their allies. While of course we all want our friends to circle the wagons for us, there is no excuse for Newman and her defenders silencing marginalized disabled people, or making fun of how people who (by definition) have communication disabilities express themselves. I am horrified by her willful abuse of her privilege, just as I was horrified by some autistic people’s calls for Newman to die, or have her kids taken away.

Siri: Please delete the book "To Siri With Love" from my Kindle app. Thank you.
at 3 comments:
Labels: , , , , , , ,
Subscribe to: Posts (Atom)