(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.