Autism Doesn’t Make Me Blue
March 30, 2017 9:13 AM Subscribe
April is coming and so is Autism Awareness/Acceptance Month, with April 2nd the International day of acceptance. Before you light it up blue with Autism Speaks, please find out what actual people on the spectrum think and perhaps look into these other great groups like - Autistic Self Advocacy Network (ASAN) Nothing About Us Without Us and the Autism Women's Network (ASN).
The twitter tag being shared this year instead of the blue campaign is #REDinstead.
The twitter tag being shared this year instead of the blue campaign is #REDinstead.
Thank you for this post.
My boss often says, of organizations like Autism Speaks, which focus on the parents and families of autistic people, "imagine if you had an organization that was led by the fathers and husbands of women. Would such an organization have any credibility on women's issues?"
posted by gauche at 9:42 AM on March 30, 2017 [57 favorites]
My boss often says, of organizations like Autism Speaks, which focus on the parents and families of autistic people, "imagine if you had an organization that was led by the fathers and husbands of women. Would such an organization have any credibility on women's issues?"
posted by gauche at 9:42 AM on March 30, 2017 [57 favorites]
gauche, that is a fantastic way to drive the point home.
posted by Dysk at 9:48 AM on March 30, 2017 [5 favorites]
posted by Dysk at 9:48 AM on March 30, 2017 [5 favorites]
Thanks for that link, Rock 'em Sock 'em! I had definitely heard the "Nothing About Us Without Us" mantra and this makes it clear.
posted by knownassociate at 9:52 AM on March 30, 2017 [1 favorite]
posted by knownassociate at 9:52 AM on March 30, 2017 [1 favorite]
There's definitely been mainstream news coverage here, and there, but I particularly remember a lot of it maybe 2010-ish? Whenever AS did that "I am autism" video series that was terrible in many ways that I won't rehash here, but if you Googled you'd probably find some stuff if you wanted to read up on it. I seem to recall some vague placating statements from AS at the time.
ASAN and the ASN are really great, thanks for giving them a shout-out here. It's been a while since I had cause to check either one out, and I'm delighted to see that they're both still up and running doing what looks like excellent work.
posted by Stacey at 10:02 AM on March 30, 2017 [2 favorites]
ASAN and the ASN are really great, thanks for giving them a shout-out here. It's been a while since I had cause to check either one out, and I'm delighted to see that they're both still up and running doing what looks like excellent work.
posted by Stacey at 10:02 AM on March 30, 2017 [2 favorites]
If you still want to help families especially with younger children, here in New Jersey is the Parents of Autistic Children (PoAC) group. They set up free recreation opportunities like swimming groups, pirate/princess parties, surf lesson groups, lego groups, huge carnival/picnics etc. They also provide all sorts of training free to parents like sex education and the spectrum teenager. They do trainings for first responders and cops, and will come in and run workshops in schools. Anything with the parents, kids, and siblings is free or extremely low cost.
posted by 80 Cats in a Dog Suit at 10:12 AM on March 30, 2017 [2 favorites]
posted by 80 Cats in a Dog Suit at 10:12 AM on March 30, 2017 [2 favorites]
Autism Speaks has made getting services and support for my autistic child and our family a fucking nightmare. All they want to do is research vaccine links, even though publicly, they claim they believe there is no link. They spend so much donated money on organizations and projects related to anti-vaccine movements, it's ridiculous.
And worse than that, their baseline is that there is something damaged in autistic people that can be cured, as opposed to autism being an intrinsic part of a person's being. They may as well be an organization trying to cure brown eyes or left-handedness.
But because they're the biggest organization, they have the loudest megaphone, and they infect every level of support and resource for autistic people and their families. Autism Speaks speaks for a bunch of people who feel like they got cheated when they got a "damaged" child. Screw blue. #REDinstead
posted by headspace at 10:50 AM on March 30, 2017 [28 favorites]
And worse than that, their baseline is that there is something damaged in autistic people that can be cured, as opposed to autism being an intrinsic part of a person's being. They may as well be an organization trying to cure brown eyes or left-handedness.
But because they're the biggest organization, they have the loudest megaphone, and they infect every level of support and resource for autistic people and their families. Autism Speaks speaks for a bunch of people who feel like they got cheated when they got a "damaged" child. Screw blue. #REDinstead
posted by headspace at 10:50 AM on March 30, 2017 [28 favorites]
This is super important, thanks for this. Glad to see this information being spread.
General question, anyone have non-AS, non-shitty resources for Autism Acceptance Month in the form of flyers/other printables? My college's disability group is going to be doing an educational tabling event later in April on this very topic. We've got some stuff but the more the better.
posted by brook horse at 11:04 AM on March 30, 2017 [1 favorite]
General question, anyone have non-AS, non-shitty resources for Autism Acceptance Month in the form of flyers/other printables? My college's disability group is going to be doing an educational tabling event later in April on this very topic. We've got some stuff but the more the better.
posted by brook horse at 11:04 AM on March 30, 2017 [1 favorite]
I was happy to find that both of the please find out what actual people on the spectrum think links include a section about 'many/most people on the spectrum don’t want a cure'. This is so hard for some people to understand or be ok with and it is so hurtful. I don't think it's wrong for a person to wish for a cure for their self the but to assume it on someone's behalf not only means that there is something wrong that must be 'cured' but also makes the person wrong for not wanting a cure and takes away their perceived ability to make that decision.
Thanks for the links. I haven't read much from advocacy groups or awareness campaigns because each time I have it's been hurtful stuff like the "I Am Autism" video or most anything else from Autism Speaks.
posted by Clinging to the Wreckage at 11:10 AM on March 30, 2017 [6 favorites]
Thanks for the links. I haven't read much from advocacy groups or awareness campaigns because each time I have it's been hurtful stuff like the "I Am Autism" video or most anything else from Autism Speaks.
posted by Clinging to the Wreckage at 11:10 AM on March 30, 2017 [6 favorites]
As someone with autism who's also raising an autistic son, I understand both the frustrations of autistic people with belief systems that tell them that there's something wrong with them AND the pain and exhaustion their families experience which can make them perceive autism as an unmitigated disaster. I'm not an Autism Speaks fan, but I certainly understand why parents who get very little support (and an awful lot of external $#&@) while trying to parent their non-neurotypical kids want to "cure" them; not only to make their own lives easier but because they feel it would make their kids' lives better too. Hurray for organizations that support parents in understanding their kids better and providing practical support like respite care, social opportunities, and assistance with obtaining appropriate services.
posted by metasarah at 12:09 PM on March 30, 2017 [6 favorites]
posted by metasarah at 12:09 PM on March 30, 2017 [6 favorites]
My experience has been that people (even people working in healthcare who you'd think would know) generally don't know much about Autism Speaks or the criticisms and controversies surrounding the group. Explaining those is anywhere from "frustrating" to "impossible;" the baseline assumption within AS that autistic people can't speak for themselves is so pervasive that it takes a lot of pushing to get people to come around to the idea that they should. There are too many wrong assumptions of what autism is and how it shapes people for meaningful understandings to happen; they might provide value to parents and caregivers of autistic people, who have their own needs and challenges that ought to be acknowledged and supported, but AS contributes to those fundamental misunderstandings.
posted by byanyothername at 12:53 PM on March 30, 2017 [6 favorites]
posted by byanyothername at 12:53 PM on March 30, 2017 [6 favorites]
Yes good, thanks for posting this.
posted by BlueNorther at 1:47 PM on March 30, 2017 [1 favorite]
posted by BlueNorther at 1:47 PM on March 30, 2017 [1 favorite]
Autism Speaks has a very different list of symptoms than Autism Acceptance
No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
No babbling by 12 months
No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
No words by 16 months
No meaningful, two-word phrases (not including imitating or repeating) by 24 months
Any loss of speech, babbling or social skills at any age
posted by destro at 1:56 PM on March 30, 2017
No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
No babbling by 12 months
No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
No words by 16 months
No meaningful, two-word phrases (not including imitating or repeating) by 24 months
Any loss of speech, babbling or social skills at any age
posted by destro at 1:56 PM on March 30, 2017
I'm playing through Watchdogs 2 and one of your hacker buddies is autistic, it does a nice job with his characterisation and the space the group make for him.
posted by Sebmojo at 2:48 PM on March 30, 2017
posted by Sebmojo at 2:48 PM on March 30, 2017
I have to* give a huge shout out to The Guardian for their coverage of autism. Practically everything there's fantastic, but these 3 videos by the [UK] National Autistic Society are well worth the look:
The National Autistic Society's breakout campaign of last year was this one: TMI, a first person perspective of an autistic person's sensory experience in a moderately busy shopping centre. It's remarkably true to my inner experience, and rather like some of the camerawork in Moonlight, too.
*normally I'd resist the urge to point out that no one's literally forcing me to give a shout out (and indeed that I'm not actually shouting), but seeing as I'm with peers, I'll ease my mind by putting this footnote in.
posted by ambrosen at 3:00 PM on March 30, 2017 [10 favorites]
- Autism: a carpet made my son feel as if he was drowning
- Autism: the restaurant steak that roared
- Autism: lost in London
The National Autistic Society's breakout campaign of last year was this one: TMI, a first person perspective of an autistic person's sensory experience in a moderately busy shopping centre. It's remarkably true to my inner experience, and rather like some of the camerawork in Moonlight, too.
*normally I'd resist the urge to point out that no one's literally forcing me to give a shout out (and indeed that I'm not actually shouting), but seeing as I'm with peers, I'll ease my mind by putting this footnote in.
posted by ambrosen at 3:00 PM on March 30, 2017 [10 favorites]
This feels like complaining that the food is terrible and on top of that the portions are small, but as somebody who only realized she was autistic at age 45 from reading Neurotribes, part (a very small part) of my dislike of Autism Speaks comes from what I perceive as their almost exclusive focus on autistic children (whom they call "children with autism") and how it affects their parents.
It's frustrating. I live in the SF Bay Area and have three of what are considered to be the world-class autism research centers nearby (UC Davis MIND institute, UCSF, Kaiser Permanente). And as far as I can tell, there's next to no research being done about how to support autistic adults, much less autistic adults who didn't get diagnosed as children.
posted by Lexica at 5:00 PM on March 30, 2017 [17 favorites]
It's frustrating. I live in the SF Bay Area and have three of what are considered to be the world-class autism research centers nearby (UC Davis MIND institute, UCSF, Kaiser Permanente). And as far as I can tell, there's next to no research being done about how to support autistic adults, much less autistic adults who didn't get diagnosed as children.
posted by Lexica at 5:00 PM on March 30, 2017 [17 favorites]
ambrosen: normally I'd resist the urge to point out that no one's literally forcing me to give a shout out (and indeed that I'm not actually shouting), but seeing as I'm with peers, I'll ease my mind by putting this footnote in.
On the subject of being with peers, and since we're in the Autism Acceptance thread, here's an amusing thing that happened to me this week that other Autistic folks might also enjoy:
I sometimes do a bone-dry deadpan joke style with people because it also sneakily gives me a rest from having to make sure my facial affect is always doing the neurotypically-expected thing. A co-worker was giving me deadpan right back, and there was a moment when we both realized we were both doing fake-deadpan and took a left turn into having a brief non-joke exchange without putting our affects back on.
It was both an incredible relief (making your face do the right thing all the time is hard, y'all) and, subsequently, a hilarious meta-joke, because folks around us didn't perceive the switch and were visibly trying to figure out what was supposed to be deadpan-funny about the later bits. And 'they' say Autistic people don't get oblique humor.
posted by dorque at 6:04 PM on March 30, 2017 [10 favorites]
On the subject of being with peers, and since we're in the Autism Acceptance thread, here's an amusing thing that happened to me this week that other Autistic folks might also enjoy:
I sometimes do a bone-dry deadpan joke style with people because it also sneakily gives me a rest from having to make sure my facial affect is always doing the neurotypically-expected thing. A co-worker was giving me deadpan right back, and there was a moment when we both realized we were both doing fake-deadpan and took a left turn into having a brief non-joke exchange without putting our affects back on.
It was both an incredible relief (making your face do the right thing all the time is hard, y'all) and, subsequently, a hilarious meta-joke, because folks around us didn't perceive the switch and were visibly trying to figure out what was supposed to be deadpan-funny about the later bits. And 'they' say Autistic people don't get oblique humor.
posted by dorque at 6:04 PM on March 30, 2017 [10 favorites]
Autism is interesting.
I have the unusual experience of being on multiple sides of the neuropsychological divide, so to speak: I am a biologist, with a background in developmental neurobiology, who also has a diagnosis of and is being treated for a lifelong neurodevelopmental condition (attention deficit disorder, specifically).
I'm particularly intrigued by the concept of neurotypicality, and it was a concept that I only understood in the abstract until I got my diagnosis earlier at this month, at the age of 28. My psychiatrist introduced to me the concept of the 'hunter vs farmer' theory of ADD (more: here), where individuals diagnosed with ADD have brains that are better suited to situations that require rapid-fire decision-making and shifts in environmental monitoring instead of slower, steadier concentration and more deliberative thinking. Obviously, people need a good deal of facility with both (especially the latter) to function as adults, but the concept of ADD as an evolutionary holdover of a sort has kind of stuck with professionals, from what my psychiatrist has told me. But we know the neurobiology, we know the circuits, there's an effective treatment, and it's about 70-80% heritable.
Autism's similarly conceptualizable: it can be construed as a variation of human neurobiology where a person is more suited to more solitary functioning and an environment with less external stimulation. However, there is no clear mechanism for autism and thus no clear medication intervention that we can use to ameliorate the social deficits that come with autism,and the heritability is a little complex, so we have to teach people with autism how to compensate for obstacles to their happiness.
Thus, through my experience with another neurodevelopmental condition, my thinking on autism as disorder versus variation has evolved somewhat, and I think a lot of other scientists and medical professionals' has too.
My understanding of Autism Speaks is that researchers who work on autism take their money but generally dismiss their controversial and incorrect ideas about the condition. Funding is tight.
posted by actionpotential at 8:50 AM on March 31, 2017 [2 favorites]
I have the unusual experience of being on multiple sides of the neuropsychological divide, so to speak: I am a biologist, with a background in developmental neurobiology, who also has a diagnosis of and is being treated for a lifelong neurodevelopmental condition (attention deficit disorder, specifically).
I'm particularly intrigued by the concept of neurotypicality, and it was a concept that I only understood in the abstract until I got my diagnosis earlier at this month, at the age of 28. My psychiatrist introduced to me the concept of the 'hunter vs farmer' theory of ADD (more: here), where individuals diagnosed with ADD have brains that are better suited to situations that require rapid-fire decision-making and shifts in environmental monitoring instead of slower, steadier concentration and more deliberative thinking. Obviously, people need a good deal of facility with both (especially the latter) to function as adults, but the concept of ADD as an evolutionary holdover of a sort has kind of stuck with professionals, from what my psychiatrist has told me. But we know the neurobiology, we know the circuits, there's an effective treatment, and it's about 70-80% heritable.
Autism's similarly conceptualizable: it can be construed as a variation of human neurobiology where a person is more suited to more solitary functioning and an environment with less external stimulation. However, there is no clear mechanism for autism and thus no clear medication intervention that we can use to ameliorate the social deficits that come with autism,and the heritability is a little complex, so we have to teach people with autism how to compensate for obstacles to their happiness.
Thus, through my experience with another neurodevelopmental condition, my thinking on autism as disorder versus variation has evolved somewhat, and I think a lot of other scientists and medical professionals' has too.
My understanding of Autism Speaks is that researchers who work on autism take their money but generally dismiss their controversial and incorrect ideas about the condition. Funding is tight.
posted by actionpotential at 8:50 AM on March 31, 2017 [2 favorites]
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(Definitely not saying it's not a thing -- Clearly it is! just want to learn more about it.)
posted by knownassociate at 9:39 AM on March 30, 2017 [1 favorite]