March 1 is the official Day of Mourning for people with disabilities who are murdered by their caregivers (yes, there are THAT many). Vigils will be held in many cities. Most are in the US, but a few are elsewhere. You can find out here if there is a vigil being planned in your area.
This news cycle, there was a lot of talk about the idea of “high-functioning” autistic people dominating discourse about autism, and about whether or not this is acceptable.
- Here is a good post about this by Dani Alexis
- And by Lysik’an, a non-verbal autistic person
- Relatedly, Sparrow Rose Jones has a good post about potential
Some interesting lived experiences:
Some posts about forms of treatment and research:
Stuff about the theory of disability activism:
Finally, we have Sad Things, Special Kelli Stapleton Edition because apparently this topic simply will not stay out of the news:
- If you are new here and need a recap, Kelli Stapleton is one of many parents who have tried to murder their autistic children. Her daughter, Issy, survived the attempt. Her case is getting more media attention than most because she was a popular “autism parent” blogger before this occurred. Recently it was back in the media because the case went to trial and she was found guilty of first-degree child abuse.
- Kelli Stapleton appeared on the Dr. Phil show. Many autistic people felt that Dr. Phil’s coverage was much too sympathetic, or that it shouldn’t have happened at all. (ASAN statement)
- Other ASAN statement on the case
- Also some people were making blog posts saying that anyone could snap and try to kill their autistic children if they were under enough stress. In response there was an #IAmNotKelliStapleton flash blog.
- There were some good posts that I’ve decided not to link to because I’m really tired of this topic, including posts very strongly making the points that have already been made in other posts about Kelli Stapleton I have linked to, and posts by mentally ill mothers who had far fewer resources and supports than Kelli Stapleton did and still never considered harming their children. However, I will link to a couple of other posts that showed up in the flash blog:
- Anonymous poster makes important points about how media attention & excuses for KS encourage other abusive parents (TW physical abuse)
- Anonymous poster turns “I am autism” rhetoric back around on itself
- Also, if you are not convinced yet of how damaging ABA therapy can be, even without aversives (Issy was in an intensive ABA program for most of her life), ischemgeek has the most harrowing post on the topic I have yet seen
The autism news this month is a doozy; there are several different unrelated Sad Things making the rounds. First, though, some miscellaneous non-sad news:
In the wake of Ferguson, a lot of people have been reflecting on interactions between disabled people and law enforcement – particularly for disabled people of colour.
Kelli Stapleton, an “autism parent” blogger who attempted a murder-suicide of her 14-year-old autistic daughter last year, recently pled guilty to first-degree child abuse. This has renewed the debate online about how to discuss this and similar cases.
Meanwhile, a new study reveals what disability advocates have been saying for years – that a lack of sex education puts disabled people at risk in multiple respects, including a heartbreakingly high rate of sexual victimization.
Other sad things:
That’s it for this post; now go have some chocolate, if you made it to the end, and cheer yourself up!!
My last post about language was prompted by some of these interesting posts about language.
There was an article recently in New York Times Magazine about children who “recoered” from autism by reducing their visible signs of autism to a certain level after therapy. I’m not going to link to the article, but here’s Chavisory taking it down by explaining what life ends up being like for children who go this route.
Meanwhile, here’s some interesting “what it’s like to be autistic”-type posts:
- The Autism Women’s Network is Kickstarting an anthology on the topic of autism and race. This is awesome.
- Speaking of autism and race: a while back I posted a link to an article about undercover cops in the US preying on developmentally disabled teens by pressuring them into agreeing to a fake drug deal, then arresting them. Turns out it’s even worse for developmentally disabled Muslim Americans; the FBI entraps them into agreeing to help with fake terrorism.
- On a completely different note: Virginia Hughes on the sexual politics of autism. (Note: This article is pretty medical-model-y, and is exclusively about researchers rather than the viewpoints of autistic people. Proceed with caution. I’m linking mostly because I find it interesting to see what the researchers are arguing about these days, and because it might be useful for newbie/NT readers who have seen gender-related research claims and want context for them.)
And some pan-disability stuff:
- Real Social Skills on what disability acceptance means
- Everybody is talking about mental illness and depression now following Robin Williams’ death. I’m not going to post much on this topic since I’m certain it’s already been plastered all over everyone’s social media feed in great detail. However, if you’re interested in this topic, here is a much-needed post by Jo from Ether Drift Theory reminding us that it’s not only about depression.
- Here is a Disability in Kidlit roundtable about what not to do when writing disabled characters.
- Here is an ASAN toolkit for managing health care during the transition to adulthood.
- Cynthia Kim on backstopping: a useful skill for our close friends and caregivers
- A shout-out from Mel Baggs to atypical Aspies. (Oh man. I fit, like, six of these.)
I’m readjusting my habits (again) and we may actually have a small and on-time news post for once. First, here are some posts about social skills and social coping:
- The Thinking Person’s Guide to Autism on how to avoid becoming hateful when people are cruel
- Real Social Skills on the idea of NTs “instinctively knowing” social rules that autistic people don’t, and why this idea is not actually correct
- Emily Brooks on learning to date while autistic
Some pan-disability stuff:
- Lisa Daxer has some kinda-good news on a very sad topic, with a couple of people who murdered autistic teenagers being brought to justice.
- A new law to help prevent organ transplant discrimination
- Real Social Skills on a version of ABA that doesn’t use punishments, and why there are still problems with this version
- A safety warning for people who post pictures of their autistic family members
- I missed this when it was first posted, but lately this article by Stop Hurting Kids, and an accompanying myth-busting fact sheet about seclusion and restraint in schools, have been making the rounds again.
This one is a long one, and a somewhat-overdue one, and a sad one.
First, there was the (utterly unscientific) study that claimed to show a link between autism and serial killing. Unfortunately, this was not what the study actually showed. It measured autism by looking in media reports about criminals and seeing if anyone speculated that they might be autistic, or that they behaved oddly or had strange social skills. So the correct conclusion isn’t that “autism and serial killing are linked”; it is “people in the news tend to speculate about the mental health and/or neurotype of killers”.
Second, of course, there was the Isla Vista shooting. An #AutismIsNotACrime flash blog happened in response to this, organized by Gretchen Leary, but it was not properly archived, and I dropped the ball and missed it at the time. However, here are a few posts, both from within the flash blog and from elsewhere, which relate to the shooting and the complex social issues which sprung up around it.
- Amy Sequenzia explains what the problem is with blaming crimes on autism, in general. (This is a good post to read if you’re sort of staring at things wondering what is going on and what the big deal is.)
- Cristiana Bell describes the impact that this blaming can have on autistic people’s families
- Morénike from Just Being Me describes another kind of impact that it has
- Dani Alexis on autism and misogyny, on what can happen when a person is both autistic and misogynistic, and why using autism to excuse misogyny creats a double standard
Since aggression, in the form of extreme violent acts, has been such a hot topic this month, here are some helpful posts on dealing with more everyday aggression and meltdowns in general.
Meanwhile, here is some stuff about research:
- Google (yes, that Google) is helping Autism Speaks compile a database of the genomes of many autistic people and their families, called AUT10K. Many autistic people have reservations about this database (and not just because Autism Speaks is involved). ASAN explains the issues here.
- Here’s an example of autism research that could actually be useful: a simulation that helps autists build job interview skills.
- And some not-so-nice, but interesting, genetic research
- A company called My Ambrosia is planning an app to help autistic adults with cooking and grocery shopping, and they are running a survey to determine what is needed. If you are an autistic adult, you can take the survey here.
Posts about other issues and differences:
(This particular news post lacks content warnings, I’m having trouble figuring out how to do them fairly this week. Content should be fairly obvious from the names of the links and from my short descriptions, but I’m not sure. Meh.)
Here is some FDA news. There was recently an FDA hearing on the use of aversives (including randomly administered electric shocks) for the treatment of autism at the Judge Rotenberg Centre; the panel recommended that the shock devices be banned. If you don’t know what I’m talking about, you should super urgently read this.
Ari Ne’eman and some other people live-tweeted parts of the hearing. This was really interesting to me and I wanted to Storify it but forgot that there is a time limit on when you can Storify people’s tweets, so there is no Storify here, sorry.
Very soon afterwards there was a hearing by a Congressional subcomittee on law enforcement treatment of adults with disabilities, following the death of Ethan Saylor, who had Down’s syndrome and suffocated while being restrained by police because of an unpaid movie ticket. I didn’t Storify this in time either. (Autistic people are subject to this kind of thing too, especially young autistic men who have a meltdown or other uncontrollable behavior when cornered by police.) Here is a (very short) article.
Other posts on law and professional care issues:
- The FDA has a friendly reminder about bogus and dangerous autism treatments
- The Combating Autism Act is still apparently up for renewal; here is a #StopCombatingMe PSA by ASAN
- Star Ford on specificity, and on how professionals who are supposed to provide autism support often aren’t giving the kinds of support that we need most
April 30, the last day of Autism Acceptance Month, was designated Autism Positivity Day and there was a flash blog. Yay! This one comes with a bunch of poetry, too!
Meanwhile, in the Sad Things section, we have Robert Robinson, a 16-year-old Canadian boy murdered in a murder-suicide by his mother last month. Once again, mainstream news coverage mostly blames this on “lack of services”.
April is Autism Awareness Month, so it’s not surprising there are more public/media things going on than usual.
Sesame Street recently announced that its characters would be lighting it up blue in a partnership with Autism Speaks
Other public affairs:
- Last time I posted about problems with Lindt and Autism Speaks, someone told me I should write to Lindt and explain the problem directly to them. I didn’t have the energy to do so, but someone else did. The response was disappointing.
- Sonnolenta on why she is passionate about raising funds for the Autism Women’s Network [TW violence against women statistics]
- The Caffeinated Autistic on how knowing the truth about Autism Speaks makes World Autism Day complicated
- New research shows brain abnormalities in the majority of autistic children which appear to date from “long before birth“. (On the one hand, cool! On the other hand, all the usual caveats about autism research and where it seems to be heading. :-|)
- M. Kelter makes a provocative point about empathy
- Musings of an Aspie on the “autistic gaze“
- Joel from Evil Autie questions the connection between autism and fecal smearing
- Chavisory on abilities that suddenly appear
Boycott Autism Speaks organized a #StopCombatingMe flash blog in response to the proposed renewal of the Combating Autism Act in the US. Lots of interesting posts came out of this one. The most valuable, IMO, is Emily Morson’s “Changing The Paradigm from Treatment to Education“. I’ve read a lot of posts talking about how some autism therapies can be harmful, but this is by far the most comprehensive and cogent one I’ve seen in terms of explaining why some of them are harmful and what needs to change. [TW abuse, not detailed]
More on social issues:
- Darryl Cunningham has an informative comic about the MMR vaccine controversy (This isn’t new, but it is the first time I saw the comic, so I’m linking to it now.)
- Did you know that some doctors refuse to give organ transplants to disabled people because they would rather give them to able-bodied people instead? Yep. Fortunately, the busy bees at ASAN have created a toolkit to help advocates with this issue!
- Judy Endow on passing
- Lydia Brown on what it’s like to have violence as a special interest [TW violence, obviously]
- Real Social Skills on representation and being a “real” disabled person
- Anonymous on whether or not it’s good to tell your employer when your child has special needs (Spoiler alert: it’s a double bind, like every other disclosure issue. *sigh*)
More on the “what to do (and what not to do)” front:
- Ron Suskind on how his autistic son used Disney movies to learn to navigate the world. (Warning: There is some language / framing near the beginning of the article that I am not entirely comfortable with, but if you can manage to read through that part, the middle and end are well worth it.)
- Cynthia Kim on pronoun reversal
Great news! Last news post, ASAN and other disability rights organizations were campaigning for President Obama to include disabled workers working on 14(c) certificates in his increase to the federal contractor minimum wage. Those efforts paid off, and “sheltered workshops” employed by the U.S. federal government will now have to pay their workers the same wages as everyone else.
Obama’s minimum wage increase was only for a specific sector of the U.S. economy, though. Sheltered workshops in the private sector are still allowed to pay disabled workers less than a dollar per hour. ASAN and the other groups who achieved this are now hoping to have section 14(c) repealed altogether, so that the minimum wage throughout the U.S. will apply to everyone, abled and disabled.
In other news, the US’s Combating Autism Act is up for re-authorization. This act is more or less what the name implies: a research funding bill in which the vast majority of funded research aims to create a world without autistic people, not to help existing autistic people with the services they actually need. More details from ASAN here. You can also check out the hashtag #StopCombatingMe on Twitter.
- S.E. Smith on why disability rights and caregivers’ rights should not be in opposition to each other. (The article is mostly about people who work professionally as caregivers, but a great deal of this also applies to disability parents and other family member caregivers.)
- Saintgloria on social networks
- Joeymom on parenting a child who is known to wander
- March 1 was an official day of remembrance for disabled people who are murdered by their caregivers. (Yes, there are that many.) If you forgot to mark the date on March 1, you might like to take a moment to look at Autism Memorial.
- Avonte Oquendo, the autistic boy from my last news post who died after wandering away from school, is still in the news. People are talking about ways to prevent further deaths through the use of tracking bracelets and other forms of control; Lisa Daxer explains why it’s not that simple.
- Also, here is a very interesting conversation from Tumblr about self-diagnosis and substance abuse.