Autistics Speak: Nothing About Us, Without Us
August 1, 2019 6:57 PM Subscribe
Many Autistic adults say childhood ABA training (Applied Behavioral Analysis) is abusive and left them traumatized. ABA was developed by Ivar Lovaas, who contributed to the creation of conversion therapy, and is derived from the same principles. The goal, as Lovass said, is to make the Autistic child look "normal". Learning to behave as most children do will theoretically help allistic (non-autistic) children feel more comfortable with (and less likely to bully) the Autistic child. No mention is made of the fact that when an Autistic person is forced to behave 'normally', they experience ongoing, intense discomfort, and often pain.
To quote Lovaas, "You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." Practitioners of ABA control children with bribes of food or drink, removal of valued items, and in some cases, electric shock. Forty hours a week, children are required to speak verbally, make eye contact, and be completely compliant while their therapist assaults them with noise (therapists are instructed to speak in a louder than normal voice), movement, a dizzying set of props, and disrespect of body space that includes grabbing, tickling, placing hands in lap or on an object, and re-positioning or picking up the child with no warning.
On facebook and twitter, tempers flare between Autistic adults and the parents of Autistic children (self-described 'Autism Parents'). Parents defend ABA, saying their children's behavior has improved. Each group claims ownership of the term, 'Autistic Community', and they have wildly different views of Autism Speaks.
Allistic parents defend Autism Speaks from criticisms by actually Autistic people, who argue that little of the organization's money goes directly towards helping Autistic people, and moreover, Autism is not a disease to be cured and Autistics are not a puzzle to be solved. Supporters of Autism Speaks cite percentages of money spent that combine a number of categories to make their use of funds appear more palatable, but this chart complied from Autism Speaks' own 2016 tax return tells a different story.
Autistics also find the organization's messaging problematic. The charity fosters fear and alarm, referring to autism as an 'epidemic', presumably in an attempt to increase donations. They describe living with an Autistic child as a nightmare, engulfing the family in despair and breaking up marriages.
As a spokesman for Autism Speaks, William Shatner believes any problems with the organization are in the past. He engages in caustic arguments with Autistic people on twitter, mocks them, and blocks them. He implies autists on twitter just want the organization to give them money. He professes to help Autistics from one side of his mouth, while silencing them with the other.
There is also disagreement between Autistic people and 'autism parents' regarding person-first language. The vast majority of autists prefers to be called Autistic. Autism is part of their identity. Many find 'person with autism' nonsensical. Parents talk over Autistic voices, insisting that 'person with autism' is a necessary reminder that Autistics are people, who just happen to 'have' autism, as one would have a cold or cancer. One person went so far as to change the wording on an 'Autistic Child in Area' street sign, making it illegible to passing drivers. A recent poll by Autism Speaks, which pushes person-first language, did not give them the result they expected, with a huge margin favoring identity-first language.
Many 'autism parents' argue that any autist writing on the internet must be 'high-functioning'. They believe 'high-functioning' autists have nothing in common with their children and can't possibly understand their needs. In fact, Autistic people find high- and low-functioning fairly meaningless terms. There are autists who also have cognitive impairments, and indeed they experience challenges those without cognitive impairments do not. But characteristics of Autism are present in all autists - social communication impairments, speech/language impairments, restricted, repetitive patterns of behavior, interests, and activities, and executive function impairments - and the majority of 'high-functioning' autists are not, in fact, functioning well in all areas and do require supports. In addition, their abilities are in flux. An autist can be talkative one day and completely unable to speak verbally the next. They might happily be social while being unable to perform the most basic tasks requiring executive function, then experience the opposite the next day. These difficulties are largely invisible to others, in part because many autists put an enormous amount of energy and thought into performing correctly, or masking.
All this performing can lead to what is referred to as Autistic Burnout. An autist who has been able to function within the outside community by masking, suddenly finds themselves past the point of exhaustion and unable to mask. Difficulty making mouth sounds, following conversations, dealing with sensory assault, echolalia (verbal or as an obsessive thought), obsessive fixation on an interest, inflexibility, heightened routines, inability to look at faces/eyes, loss of facial expression, stimming - any or all of these become impossible to hide.
Amethyst Schaber's 'Ask an Autistic' is a valuable resource for anyone looking for more information about autism from an Autistic perspective.
To quote Lovaas, "You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." Practitioners of ABA control children with bribes of food or drink, removal of valued items, and in some cases, electric shock. Forty hours a week, children are required to speak verbally, make eye contact, and be completely compliant while their therapist assaults them with noise (therapists are instructed to speak in a louder than normal voice), movement, a dizzying set of props, and disrespect of body space that includes grabbing, tickling, placing hands in lap or on an object, and re-positioning or picking up the child with no warning.
On facebook and twitter, tempers flare between Autistic adults and the parents of Autistic children (self-described 'Autism Parents'). Parents defend ABA, saying their children's behavior has improved. Each group claims ownership of the term, 'Autistic Community', and they have wildly different views of Autism Speaks.
Allistic parents defend Autism Speaks from criticisms by actually Autistic people, who argue that little of the organization's money goes directly towards helping Autistic people, and moreover, Autism is not a disease to be cured and Autistics are not a puzzle to be solved. Supporters of Autism Speaks cite percentages of money spent that combine a number of categories to make their use of funds appear more palatable, but this chart complied from Autism Speaks' own 2016 tax return tells a different story.
Autistics also find the organization's messaging problematic. The charity fosters fear and alarm, referring to autism as an 'epidemic', presumably in an attempt to increase donations. They describe living with an Autistic child as a nightmare, engulfing the family in despair and breaking up marriages.
As a spokesman for Autism Speaks, William Shatner believes any problems with the organization are in the past. He engages in caustic arguments with Autistic people on twitter, mocks them, and blocks them. He implies autists on twitter just want the organization to give them money. He professes to help Autistics from one side of his mouth, while silencing them with the other.
There is also disagreement between Autistic people and 'autism parents' regarding person-first language. The vast majority of autists prefers to be called Autistic. Autism is part of their identity. Many find 'person with autism' nonsensical. Parents talk over Autistic voices, insisting that 'person with autism' is a necessary reminder that Autistics are people, who just happen to 'have' autism, as one would have a cold or cancer. One person went so far as to change the wording on an 'Autistic Child in Area' street sign, making it illegible to passing drivers. A recent poll by Autism Speaks, which pushes person-first language, did not give them the result they expected, with a huge margin favoring identity-first language.
Many 'autism parents' argue that any autist writing on the internet must be 'high-functioning'. They believe 'high-functioning' autists have nothing in common with their children and can't possibly understand their needs. In fact, Autistic people find high- and low-functioning fairly meaningless terms. There are autists who also have cognitive impairments, and indeed they experience challenges those without cognitive impairments do not. But characteristics of Autism are present in all autists - social communication impairments, speech/language impairments, restricted, repetitive patterns of behavior, interests, and activities, and executive function impairments - and the majority of 'high-functioning' autists are not, in fact, functioning well in all areas and do require supports. In addition, their abilities are in flux. An autist can be talkative one day and completely unable to speak verbally the next. They might happily be social while being unable to perform the most basic tasks requiring executive function, then experience the opposite the next day. These difficulties are largely invisible to others, in part because many autists put an enormous amount of energy and thought into performing correctly, or masking.
All this performing can lead to what is referred to as Autistic Burnout. An autist who has been able to function within the outside community by masking, suddenly finds themselves past the point of exhaustion and unable to mask. Difficulty making mouth sounds, following conversations, dealing with sensory assault, echolalia (verbal or as an obsessive thought), obsessive fixation on an interest, inflexibility, heightened routines, inability to look at faces/eyes, loss of facial expression, stimming - any or all of these become impossible to hide.
Amethyst Schaber's 'Ask an Autistic' is a valuable resource for anyone looking for more information about autism from an Autistic perspective.
Did not know the connection between conversion therapy and ABA- not surprised in the least. In some ways my late diagnosis saved me from a lot of pain.
posted by Homo neanderthalensis at 7:28 PM on August 1, 2019 [11 favorites]
posted by Homo neanderthalensis at 7:28 PM on August 1, 2019 [11 favorites]
Thank you for such a thorough post. I feel like I’ve been reading shady things about Autism Speaks for years now.
posted by sallybrown at 7:35 PM on August 1, 2019 [7 favorites]
posted by sallybrown at 7:35 PM on August 1, 2019 [7 favorites]
Thanks for a great overview of what we currently know about autism. I would also mention The Thinking Person’s Guide to Autism as a key resource.
posted by w0mbat at 7:51 PM on August 1, 2019 [12 favorites]
posted by w0mbat at 7:51 PM on August 1, 2019 [12 favorites]
ABA is required to be covered by Medicaid. I had not heard this side of it before. It was touted as a near “cure.” (Not my words, not something I think, something my local Disability Law Center was saying.).
posted by kerf at 8:02 PM on August 1, 2019
posted by kerf at 8:02 PM on August 1, 2019
I'm glad for my late diagnosis, I guess.
posted by b33j at 8:05 PM on August 1, 2019 [5 favorites]
posted by b33j at 8:05 PM on August 1, 2019 [5 favorites]
Previously, a handful of commenters indicated they or their kids were participating in ABA in name only (i.e. useful therapies under the label ABA to get them paid for by insurance). I'm allistic but otherwise neurodiverse, and I really do hope those commenters' experiences are widespread.
posted by bagel at 8:24 PM on August 1, 2019 [7 favorites]
posted by bagel at 8:24 PM on August 1, 2019 [7 favorites]
Nice post!
In fact, Autistic people find high- and low-functioning fairly meaningless terms.
I'm autistic, and I don't find that. I think a description for how self-sufficient a person is can be really useful. You can have a stroke and also be high-functioning - even though might be impairments. I also have a disability, owing to an accident in high school. I can walk normally, but can no longer run long distances. At some point the future, I won't be able to walk unaided - so, I'm currently high functioning in that regard, but won't be. It's not a judgment - unless you're an asshat* - it just is.
I get that some people would love it if language could leave the negative parts of a definition behind. I don't think that is possible - and frankly suggests an inferiority in their thinking. Things have upsides and downsides. It's important to consider them all.
I also really like the word "Autist". It sounds... arcane. And kind of awesome. Given the amount of learning involved, I think it fits. I see and think in ways that normies can't or won't. I'm not better. Just different. And awesome.
One thing that does suck - people respond to me with remarkable violence. I've never hurt anyone, except in self-defense. My mother was horrifically abusive to me. My classmates bullied and teased me. I was the kid who got a swirlie. Roughly 1/3 of the women I have dated have hit me.
My ex-wife said to me - a few weeks before I filed for divorce - "I'm embarrassed by you, and I'm embarrassed for you. Every time you open your mouth I cringe. You think you're so smart and funny - but you don't even realize people are laughing at you. They don't like you, and they don't want you to talk. They don't want you around. I don't want you around. I'm president of the club and I can't have someone as clueless and stupid as you coming to the meetings with me. You're an embarrassment to me and to the club. None of my friends like you and you don't have friends because they hate you, too."
Remarkably, it took my therapist two months to convince me she was abusive - even though, yeah I have nightmares about that a few times a month. Pretty much everyone is like that to me soon enough. I thought my ex was pretty nice, because she only hit me those few times. I sort of had a low regard for most "normal" peoples level of self control. I guess I can expect more ? Crazy. Very few of you are capable of it.
People are weird.
posted by Pogo_Fuzzybutt at 8:28 PM on August 1, 2019 [47 favorites]
In fact, Autistic people find high- and low-functioning fairly meaningless terms.
I'm autistic, and I don't find that. I think a description for how self-sufficient a person is can be really useful. You can have a stroke and also be high-functioning - even though might be impairments. I also have a disability, owing to an accident in high school. I can walk normally, but can no longer run long distances. At some point the future, I won't be able to walk unaided - so, I'm currently high functioning in that regard, but won't be. It's not a judgment - unless you're an asshat* - it just is.
I get that some people would love it if language could leave the negative parts of a definition behind. I don't think that is possible - and frankly suggests an inferiority in their thinking. Things have upsides and downsides. It's important to consider them all.
I also really like the word "Autist". It sounds... arcane. And kind of awesome. Given the amount of learning involved, I think it fits. I see and think in ways that normies can't or won't. I'm not better. Just different. And awesome.
One thing that does suck - people respond to me with remarkable violence. I've never hurt anyone, except in self-defense. My mother was horrifically abusive to me. My classmates bullied and teased me. I was the kid who got a swirlie. Roughly 1/3 of the women I have dated have hit me.
My ex-wife said to me - a few weeks before I filed for divorce - "I'm embarrassed by you, and I'm embarrassed for you. Every time you open your mouth I cringe. You think you're so smart and funny - but you don't even realize people are laughing at you. They don't like you, and they don't want you to talk. They don't want you around. I don't want you around. I'm president of the club and I can't have someone as clueless and stupid as you coming to the meetings with me. You're an embarrassment to me and to the club. None of my friends like you and you don't have friends because they hate you, too."
Remarkably, it took my therapist two months to convince me she was abusive - even though, yeah I have nightmares about that a few times a month. Pretty much everyone is like that to me soon enough. I thought my ex was pretty nice, because she only hit me those few times. I sort of had a low regard for most "normal" peoples level of self control. I guess I can expect more ? Crazy. Very few of you are capable of it.
People are weird.
posted by Pogo_Fuzzybutt at 8:28 PM on August 1, 2019 [47 favorites]
Goodness, there's so much in this post. Thanks ruetheday!
I got my diagnosis two weeks ago (I'm 34), though it was long-anticipated,* and I just finished Steve Silberman's Neurotribes, which was good if certainly not perfect. One thing it does do well it to portray Lovaas as a real dyed-in-the-wool sadist. Many of his own practices with autistic children, if (perhaps) not ABA as it has been widely practiced, I don't know, were straight-up torture, and he straightforwardly admitted that he derived satisfaction from meting out physical punishment to children he straightforwardly believed to be "acting out" in order to vindictively and personally undermine him.
I think I gasped aloud when the connection was made to conversion therapy in the book (I am also gay and nonbinary), and the comparison does so much to highlight the fundamental cruelty, wrongheadedness and probable futility of the practice—which can easily seem, especially to struggling parents, if not "reasonable" then at least "worth it." Other, far less horrifying forms of occupational therapy exist that address necessary life skills and stress management without prioritizing "passing" above all else.
Another thing the book does methodically and well is to debunk the entire notion of an emergent "autism epidemic." Rising numbers and rates of diagnosis are the logical, predictable and indeed intended consequence of broadening diagnostic criteria and increased public awareness (I think a lot of people would be surprised by how restrictive those criteria were until quite recently—they were expanded so that a wider range of autistic people would be able to access a diagnosis and therefore, ideally, services and supports).
The resources about masking and burnout are very much appreciated — I have been very grateful for the autistic women who have clearly and forcefully articulated their own experiences, as they map much more closely to my own than the more common and masculinist understanding of the "Asperger profile."
*This is tangential to the post, but the one really surprising thing about my own diagnosis was my high score on the Toronto Alexithymia Scale and learning about alexithymia itself. "Difficulty naming emotions" … doesn't sound like that big a deal, but its impact on all aspects of interpersonal relationships and communication can be pervasive and profound. For me, being able to understand or at least imagine a mechanism behind some of my difficulties with communication has been very clarifying and an odd source of comfort.
Anyway autism and brains and autistic brains are super interesting, and I am so grateful to benefit from a committed, passionate, organized and principled cohort of other autists and fuck Autism Speaks forever. Like H. neanderthalensis and b33j I guess I'm glad I was diagnosed late and never subjected to the "treatments" that would have been available when I was a child (though if I could have found out, like, before grad school it could have saved me a lot of grief).
posted by wreckingball at 8:39 PM on August 1, 2019 [26 favorites]
I got my diagnosis two weeks ago (I'm 34), though it was long-anticipated,* and I just finished Steve Silberman's Neurotribes, which was good if certainly not perfect. One thing it does do well it to portray Lovaas as a real dyed-in-the-wool sadist. Many of his own practices with autistic children, if (perhaps) not ABA as it has been widely practiced, I don't know, were straight-up torture, and he straightforwardly admitted that he derived satisfaction from meting out physical punishment to children he straightforwardly believed to be "acting out" in order to vindictively and personally undermine him.
I think I gasped aloud when the connection was made to conversion therapy in the book (I am also gay and nonbinary), and the comparison does so much to highlight the fundamental cruelty, wrongheadedness and probable futility of the practice—which can easily seem, especially to struggling parents, if not "reasonable" then at least "worth it." Other, far less horrifying forms of occupational therapy exist that address necessary life skills and stress management without prioritizing "passing" above all else.
Another thing the book does methodically and well is to debunk the entire notion of an emergent "autism epidemic." Rising numbers and rates of diagnosis are the logical, predictable and indeed intended consequence of broadening diagnostic criteria and increased public awareness (I think a lot of people would be surprised by how restrictive those criteria were until quite recently—they were expanded so that a wider range of autistic people would be able to access a diagnosis and therefore, ideally, services and supports).
The resources about masking and burnout are very much appreciated — I have been very grateful for the autistic women who have clearly and forcefully articulated their own experiences, as they map much more closely to my own than the more common and masculinist understanding of the "Asperger profile."
*This is tangential to the post, but the one really surprising thing about my own diagnosis was my high score on the Toronto Alexithymia Scale and learning about alexithymia itself. "Difficulty naming emotions" … doesn't sound like that big a deal, but its impact on all aspects of interpersonal relationships and communication can be pervasive and profound. For me, being able to understand or at least imagine a mechanism behind some of my difficulties with communication has been very clarifying and an odd source of comfort.
Anyway autism and brains and autistic brains are super interesting, and I am so grateful to benefit from a committed, passionate, organized and principled cohort of other autists and fuck Autism Speaks forever. Like H. neanderthalensis and b33j I guess I'm glad I was diagnosed late and never subjected to the "treatments" that would have been available when I was a child (though if I could have found out, like, before grad school it could have saved me a lot of grief).
posted by wreckingball at 8:39 PM on August 1, 2019 [26 favorites]
My son is autistic and a couple of years ago we tried a round of ABA therapy. It didn't seem to be causing him much distress. On the contrary, I think he kind of enjoyed the interaction with the worker and some of the games. But I don't think he got much out of it either. At the same time that we were doing that program, I took a class on the collaborative problem solving approach to parenting, and really connected with it. I really noticed the contrast between that approach, which eschews all reward/punishment scenarios, and ABA which is basically all about reward/punishment. At first I thought, "well I guess autistic kids need that kind of structure, to have rewards and punishments for their behaviors." But in practice, there was too much of a disconnect. We haven't gone back for any more ABA therapy, and I don't think we will. I didn't know about the conversion therapy connection. That's gross.
posted by wabbittwax at 8:53 PM on August 1, 2019 [7 favorites]
posted by wabbittwax at 8:53 PM on August 1, 2019 [7 favorites]
Pogo_Fuzzybutt, Apologies - I neglected to qualify that with 'some'.
posted by ruetheday at 8:54 PM on August 1, 2019 [2 favorites]
posted by ruetheday at 8:54 PM on August 1, 2019 [2 favorites]
I think he kind of enjoyed the interaction with the worker and some of the games.
I wonder what he'll say about this experience years from now when he's less dependent on you. We just had a metatalk on making metafilter a better place for the neurodivergent, and having the parents of autistic people talk over the actually autistic is the sort of thing that makes people like me want to leave.
posted by Homo neanderthalensis at 9:04 PM on August 1, 2019 [19 favorites]
I wonder what he'll say about this experience years from now when he's less dependent on you. We just had a metatalk on making metafilter a better place for the neurodivergent, and having the parents of autistic people talk over the actually autistic is the sort of thing that makes people like me want to leave.
posted by Homo neanderthalensis at 9:04 PM on August 1, 2019 [19 favorites]
I'm autistic, and I don't find that. I think a description for how self-sufficient a person is can be really useful
I've been wrangling with this, personally, but fortunately others have wrangled it for me, and I like Jessica Flynn's suggestion of talking about "high support needs," "zero support needs," etc. It's a bit inelegant but it can be worded and inflected to suit each individual's situation. "High-" and "low-functioning" labels do kind of throw everyone under the bus, underselling the potential of people who require extensive support and creating unrealistic and unsustainable expectations for those labeled "high-functioning," as laid out in the post.
posted by wreckingball at 9:05 PM on August 1, 2019 [17 favorites]
I've been wrangling with this, personally, but fortunately others have wrangled it for me, and I like Jessica Flynn's suggestion of talking about "high support needs," "zero support needs," etc. It's a bit inelegant but it can be worded and inflected to suit each individual's situation. "High-" and "low-functioning" labels do kind of throw everyone under the bus, underselling the potential of people who require extensive support and creating unrealistic and unsustainable expectations for those labeled "high-functioning," as laid out in the post.
posted by wreckingball at 9:05 PM on August 1, 2019 [17 favorites]
Mod note: A few things removed. I'm gonna ask folks to take a pass on coming into this discussion with parent-perspective takes on ABA. As much as there's room in the general world of conversation from a parental perspective on how ABA ends up in the mix of the choices they make or the challenges tied up in parenting, this doesn't really feel like the thread for it and I'd rather give folks space to talk about their first-person experiences with autism and how it intersects with the organizations and history and etc. the post talks about.
posted by cortex (staff) at 9:29 PM on August 1, 2019 [41 favorites]
posted by cortex (staff) at 9:29 PM on August 1, 2019 [41 favorites]
"high support needs," "zero support needs," etc.
i love this language so much more than 'functioning!' i feel a pressure to say 'dont worry, im high-functioning, im not demanding' but i feel comfortable saying i need a certain level of support.
i love how thorough this post is and the framing of it. i'd love it if we got to talk about everything mentioned and not just aba. like, i've been thinking about the problem of masking a lot lately because i got to live in a household with two other autistic people for a few months and it was truly the best thing in the whole world? we could do whatever weird things we needed to and we'd usually explain it because we loved explaining things but not because anyone was freaked out by it? we could ask for things to be done a certain way or say, hey, this seems hard for you, do you need something to be different, or say i'm sorry, i don't have the spoons for this right now, get back to me when it's not bright out/i've eaten/i've stopped doing this task i need to focus on. the best! i want more of that
posted by gaybobbie at 9:30 PM on August 1, 2019 [28 favorites]
i love this language so much more than 'functioning!' i feel a pressure to say 'dont worry, im high-functioning, im not demanding' but i feel comfortable saying i need a certain level of support.
i love how thorough this post is and the framing of it. i'd love it if we got to talk about everything mentioned and not just aba. like, i've been thinking about the problem of masking a lot lately because i got to live in a household with two other autistic people for a few months and it was truly the best thing in the whole world? we could do whatever weird things we needed to and we'd usually explain it because we loved explaining things but not because anyone was freaked out by it? we could ask for things to be done a certain way or say, hey, this seems hard for you, do you need something to be different, or say i'm sorry, i don't have the spoons for this right now, get back to me when it's not bright out/i've eaten/i've stopped doing this task i need to focus on. the best! i want more of that
posted by gaybobbie at 9:30 PM on August 1, 2019 [28 favorites]
The link to http://www.boycottautismspeaks.com in the article goes to Boycott Rhinoplasty now for some reason. The actual url seems to be http://boycottautismspeaks.org/.
posted by mwalimu at 9:43 PM on August 1, 2019 [5 favorites]
posted by mwalimu at 9:43 PM on August 1, 2019 [5 favorites]
If not already mentioned in other threads on autism there is a great network run by autistics for girls, women, and non-binary people that I highly recommend.
Soon to be included in the Library of Congress [along with many other up and coming people online like Contrapoints]!
Autistic Women & Nonbinary Network
"We welcome all women, transgender and cisgender, non-binary and genderqueer people, Two-Spirit people, people who have at anytime identified as women or girls, and all other people of marginalized genders or of no gender. AWN recognizes and affirms all people’s gender identities and expressions, as well as choices about disclosure, transition, and going stealth.
Our goal is to dispel stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis. We seek to share information which works to build acceptance and understanding of disability."
I know and interact with many of the people that write for this website this includes several professionals that have relevant degrees and skills related to autism. They are all big-hearted and thoughtful. Their positions echo exactly what OP says about autistic rights and problems with parental, caregiver, and therapist interference. Take a minute and check them out.
posted by RuvaBlue at 9:49 PM on August 1, 2019 [21 favorites]
Soon to be included in the Library of Congress [along with many other up and coming people online like Contrapoints]!
Autistic Women & Nonbinary Network
"We welcome all women, transgender and cisgender, non-binary and genderqueer people, Two-Spirit people, people who have at anytime identified as women or girls, and all other people of marginalized genders or of no gender. AWN recognizes and affirms all people’s gender identities and expressions, as well as choices about disclosure, transition, and going stealth.
Our goal is to dispel stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis. We seek to share information which works to build acceptance and understanding of disability."
I know and interact with many of the people that write for this website this includes several professionals that have relevant degrees and skills related to autism. They are all big-hearted and thoughtful. Their positions echo exactly what OP says about autistic rights and problems with parental, caregiver, and therapist interference. Take a minute and check them out.
posted by RuvaBlue at 9:49 PM on August 1, 2019 [21 favorites]
At first I thought, "well I guess autistic kids need that kind of structure, to have rewards and punishments for their behaviors."
I'm not sure which part of the ADHD/Aspergers comorbidity cocktail, if any, to attribute this to, but I went through a lot of shit as a kid because rewards and punishments just straight up didn't work on me.
The cycle went "Hey, taquito child, here is an expectation of a thing we think you should be able to do; it's gonna be kind of random whether or not this is something you can actually handle at your level of executive function. We definitely don't understand you well enough to give you any support for that, and we're also definitely sticking to our reward/punishment scheme, so basically you're rolling a die to see if you get student of the month or have to explain yourself to the principal again! It's fun! School is fun!"
So before you start using rewards & punishments on your kid it might be worth looking into whether they really want to be able to do the thing but are finding it harder than you personally would expect it to be, and giving them whatever support might help with that.
posted by taquito sunrise at 12:27 AM on August 2, 2019 [32 favorites]
I'm not sure which part of the ADHD/Aspergers comorbidity cocktail, if any, to attribute this to, but I went through a lot of shit as a kid because rewards and punishments just straight up didn't work on me.
The cycle went "Hey, taquito child, here is an expectation of a thing we think you should be able to do; it's gonna be kind of random whether or not this is something you can actually handle at your level of executive function. We definitely don't understand you well enough to give you any support for that, and we're also definitely sticking to our reward/punishment scheme, so basically you're rolling a die to see if you get student of the month or have to explain yourself to the principal again! It's fun! School is fun!"
So before you start using rewards & punishments on your kid it might be worth looking into whether they really want to be able to do the thing but are finding it harder than you personally would expect it to be, and giving them whatever support might help with that.
posted by taquito sunrise at 12:27 AM on August 2, 2019 [32 favorites]
I'm dazed and confused by what I just read. Overwhelmed, even. I haven't read a lot about autism. I only just got an unofficial diagnosis from my therapist a couple weeks ago, but I had my suspicions.
BURNOUT? That explains my life for the past few years.
I'm shaking. This post means so much to me. I needed this, desperately.
posted by Goofyy at 4:08 AM on August 2, 2019 [27 favorites]
BURNOUT? That explains my life for the past few years.
I'm shaking. This post means so much to me. I needed this, desperately.
posted by Goofyy at 4:08 AM on August 2, 2019 [27 favorites]
I'm a parent. Sorry. However I'm very against ABA. Unfortunately it's used in a lot of public schools in America with a "behaviorist" tweaking the method for each classroom throughout the year. It's very hard to avoid it unless you can homeschool or manage to get your kid into a private school, which not every family can.
I just try to explain why I'm against ABA to other parents in my friend group as often as I can and hope it has a positive impact on our district.
posted by 80 Cats in a Dog Suit at 4:48 AM on August 2, 2019 [3 favorites]
I just try to explain why I'm against ABA to other parents in my friend group as often as I can and hope it has a positive impact on our district.
posted by 80 Cats in a Dog Suit at 4:48 AM on August 2, 2019 [3 favorites]
"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person."
So you start out convinced I'm not a person? I have some strong words for that.
posted by DreamerFi at 5:02 AM on August 2, 2019 [42 favorites]
So you start out convinced I'm not a person? I have some strong words for that.
posted by DreamerFi at 5:02 AM on August 2, 2019 [42 favorites]
I'm neither a parent of an child with autism or someone with autism myself, but I'm a special ed lawyer, so I encounter ABA issues pretty often. It's kind of shocking how little of this discussion has spread beyond the community of people with autism; I've brought it up in passing with my colleagues and it's always been treated as brand new information that's rejected out of hand pretty quickly, because "ABA is the gold standard" has been the line for so long. That's still kind of strange, though, because our jurisdiction was really close to the issues around the Judge Rotenberg Center's use of adversives as part of its ABA program, which we all realized were torture.
For my part, I don't really emphasize ABA in my own practice (though what specifically we're aiming for is driven by our clients who are the parents), and generally specific methodologies are up to schools to decide, so it's hard for us to control/influence that. It's something our field could really stand to address more directly, though. And as always having more people with autism in the community would help, I don't think many of my colleagues understand what people with autism are experiencing; hell, I don't and I go out of my way to read about this stuff.
posted by Bulgaroktonos at 6:27 AM on August 2, 2019 [13 favorites]
For my part, I don't really emphasize ABA in my own practice (though what specifically we're aiming for is driven by our clients who are the parents), and generally specific methodologies are up to schools to decide, so it's hard for us to control/influence that. It's something our field could really stand to address more directly, though. And as always having more people with autism in the community would help, I don't think many of my colleagues understand what people with autism are experiencing; hell, I don't and I go out of my way to read about this stuff.
posted by Bulgaroktonos at 6:27 AM on August 2, 2019 [13 favorites]
Someone linked me the burnout link a few months back, and I keep - - it's been up in my tabs ever since. Sometimes I go back to it and touch it, but it burns so brightly that I can't hold it for long.
I have been losing some of my ability to word over the past couple of years, plus a lot of self care things: my ability to eat and motivation to do so comes and goes; my ability to self regulate without descending into hyperfocus; my ability to cope with interruption while returning to a task; some of my ability to manage sensory inputs. My energy levels for socializing aren't rebounding as fast as they used to, either.
Earlier this week, I must have been frozen long enough for my pica cat to eat about four inches up the pants I was currently wearing without my noticing. That's scary! I feel like I'm losing time and I can't get it back!
I've been under tremendous amounts of stress for years now, with big stressor after big stressor happening at least every six months. I'm really tired of trying to explain that and list them out, but I'm also really terrified of trying to articulate how many things I'm trying to cope with. And I am so, so used to not being believed.
I'm 95% sure that one of my supervisors is neurodiverse and probably undiagnosed and I was more direct with them about my needs and my frustration with communication issues than maybe I should have been recently in an effort to be kind. I nearly got fired. I've spent almost a decade now patiently explaining that their issues with organization are probably not a personal slight to my fellow students and trying to balance their privacy and their tendency to project their own needs onto me with my needs, and I'm still hurting about that and frustrated and angry, because I can see that their treatment of me is based in shame but understanding it doesn't make it right.
I found out several months ago that my mother apparently fought tooth and nail to prevent any evidence of my diagnosis (age 12) from making it into my school records, even at the time I was diagnosed, when I had a fucking IEP. (It was only okay I had the IEP because I was in Kansas at the time, where all gifted kids routinely get them no matter what else is up.) She "lost" the paperwork on it by the time I graduated college, and told me over and over again to tell no one once I graduated school. I see my students come up to me and say "I'm autistic and I might not look you in the eye, I need that as an accommodation" and my heart swells (for them) and breaks (for me) even as I say "Well, of course, that's fine." If I need to plead disability because I burn out too hard, how am I going to do that? We got my partner an adult diagnosis when they went back to school, but that was a school thing, and I'm not really a student anymore. Asking for help breeds stigma, and I'm so tired of being told that I'm either totally not autistic at all (I'm too good at social dynamics, too articulate, too something) or having people tell me enthusiastically that I'm just like Sheldon fucking Cooper before I self disclose.
Before I was diagnosed (well: after the ADHD, which was probably wrong because I'm actually very sensitive to stimulants and not in the helpful way, but before the autism which is probably right)--before I was diagnosed, in the third grade, I was shunted to a class of all the gifted kids in the school district, and we were kept together as a unit until sixth grade when I moved. It was the best thing that could have happened to me, because there were so many ADHD and autistic spectrum kids in that class (some diagnosed then, others I knew were diagnosed later, others still I'm just, in hindsight, pretty sure) that I didn't get shamed by my peers, and I had friends, and I learned that we could just accommodate each other's special interests and anyway, I felt more or less ordinary at school then. That was, in hindsight, so powerful: I'm not the only child like me, and I knew it so early, and that was more or less an accident on the part of all the adults who took part in our raising and education. And yet the effects persist.
I have thought for decades that my mother, rigid and ruled by shame and infamously awful at tact, bare-knuckling her way through the world, was probably not neurotypical herself. She also wove her shame into my bones like a gift. If she hadn't been so ashamed of anyone knowing, she would have taken me to ABA or something similar in a heartbeat. How do I hold that?
I am a fucking academic. It's not like I'm the only person in my field like this. But there's so many thorns around naming it and talking about it and using it, like childhood training wheels that an adult shouldn't need. Even if you need training wheels to start, you should all be able to ride the bike as an adult, right? (I hate bikes, which fill me with terror that I'm going to fall without exception.)
How do I talk about this? When people only talk about children! I grew up and I'm still here and I can't tuck it all under my hat! I didn't leave or stop being me when I stopped being a child, so why is every conversation about this narrowly focused on children? The FPP isn't! We grow up, and we go on, and we still exist around you. Where do I find the space to replenish that burnout? How can I do it when I'm spending so much energy on maintaining memorized camouflage?
And as with all of these conversations, the exhortation returns: "but we must now think of the children!"
posted by sciatrix at 6:45 AM on August 2, 2019 [56 favorites]
I have been losing some of my ability to word over the past couple of years, plus a lot of self care things: my ability to eat and motivation to do so comes and goes; my ability to self regulate without descending into hyperfocus; my ability to cope with interruption while returning to a task; some of my ability to manage sensory inputs. My energy levels for socializing aren't rebounding as fast as they used to, either.
Earlier this week, I must have been frozen long enough for my pica cat to eat about four inches up the pants I was currently wearing without my noticing. That's scary! I feel like I'm losing time and I can't get it back!
I've been under tremendous amounts of stress for years now, with big stressor after big stressor happening at least every six months. I'm really tired of trying to explain that and list them out, but I'm also really terrified of trying to articulate how many things I'm trying to cope with. And I am so, so used to not being believed.
I'm 95% sure that one of my supervisors is neurodiverse and probably undiagnosed and I was more direct with them about my needs and my frustration with communication issues than maybe I should have been recently in an effort to be kind. I nearly got fired. I've spent almost a decade now patiently explaining that their issues with organization are probably not a personal slight to my fellow students and trying to balance their privacy and their tendency to project their own needs onto me with my needs, and I'm still hurting about that and frustrated and angry, because I can see that their treatment of me is based in shame but understanding it doesn't make it right.
I found out several months ago that my mother apparently fought tooth and nail to prevent any evidence of my diagnosis (age 12) from making it into my school records, even at the time I was diagnosed, when I had a fucking IEP. (It was only okay I had the IEP because I was in Kansas at the time, where all gifted kids routinely get them no matter what else is up.) She "lost" the paperwork on it by the time I graduated college, and told me over and over again to tell no one once I graduated school. I see my students come up to me and say "I'm autistic and I might not look you in the eye, I need that as an accommodation" and my heart swells (for them) and breaks (for me) even as I say "Well, of course, that's fine." If I need to plead disability because I burn out too hard, how am I going to do that? We got my partner an adult diagnosis when they went back to school, but that was a school thing, and I'm not really a student anymore. Asking for help breeds stigma, and I'm so tired of being told that I'm either totally not autistic at all (I'm too good at social dynamics, too articulate, too something) or having people tell me enthusiastically that I'm just like Sheldon fucking Cooper before I self disclose.
Before I was diagnosed (well: after the ADHD, which was probably wrong because I'm actually very sensitive to stimulants and not in the helpful way, but before the autism which is probably right)--before I was diagnosed, in the third grade, I was shunted to a class of all the gifted kids in the school district, and we were kept together as a unit until sixth grade when I moved. It was the best thing that could have happened to me, because there were so many ADHD and autistic spectrum kids in that class (some diagnosed then, others I knew were diagnosed later, others still I'm just, in hindsight, pretty sure) that I didn't get shamed by my peers, and I had friends, and I learned that we could just accommodate each other's special interests and anyway, I felt more or less ordinary at school then. That was, in hindsight, so powerful: I'm not the only child like me, and I knew it so early, and that was more or less an accident on the part of all the adults who took part in our raising and education. And yet the effects persist.
I have thought for decades that my mother, rigid and ruled by shame and infamously awful at tact, bare-knuckling her way through the world, was probably not neurotypical herself. She also wove her shame into my bones like a gift. If she hadn't been so ashamed of anyone knowing, she would have taken me to ABA or something similar in a heartbeat. How do I hold that?
I am a fucking academic. It's not like I'm the only person in my field like this. But there's so many thorns around naming it and talking about it and using it, like childhood training wheels that an adult shouldn't need. Even if you need training wheels to start, you should all be able to ride the bike as an adult, right? (I hate bikes, which fill me with terror that I'm going to fall without exception.)
How do I talk about this? When people only talk about children! I grew up and I'm still here and I can't tuck it all under my hat! I didn't leave or stop being me when I stopped being a child, so why is every conversation about this narrowly focused on children? The FPP isn't! We grow up, and we go on, and we still exist around you. Where do I find the space to replenish that burnout? How can I do it when I'm spending so much energy on maintaining memorized camouflage?
And as with all of these conversations, the exhortation returns: "but we must now think of the children!"
posted by sciatrix at 6:45 AM on August 2, 2019 [56 favorites]
The previous MeFi thread on this topic directly influenced our decisions as parents of a wonderful (recently diagnosed) 3-year-old in choosing what types of therapy to pursue. We've been trying to learn as much as we can over the 9 months and I'm happy threads like this one exist. Thanks for the post, ruetheday, and everyone else for sharing your perspectives.
posted by The Lurkers Support Me in Email at 6:59 AM on August 2, 2019 [22 favorites]
posted by The Lurkers Support Me in Email at 6:59 AM on August 2, 2019 [22 favorites]
so basically you're rolling a die to see if you get student of the month or have to explain yourself to the principal again! It's fun! School is fun!"
Being undiagnosed in school, this was so much my experience! In retrospect it did teach me a deep appreciation for the difference between law and justice, which influenced so much about my modern political views. But it was a harsh lesson, and now it's decades later and in therapy I'm still working through the emotional trauma it created.
posted by traveler_ at 7:21 AM on August 2, 2019 [8 favorites]
Being undiagnosed in school, this was so much my experience! In retrospect it did teach me a deep appreciation for the difference between law and justice, which influenced so much about my modern political views. But it was a harsh lesson, and now it's decades later and in therapy I'm still working through the emotional trauma it created.
posted by traveler_ at 7:21 AM on August 2, 2019 [8 favorites]
I am sympathetic towards parents who are desperate to find ways to deal with their children's aggression, self-harming, or lack of verbal communication. I wish, though, that people would not assume every autist they encounter on the internet does not share any of those difficulties.
The internet has made it possible for people who do not communicate verbally, cannot communicate verbally, or live with Selective Mutism to engage in conversation. We could be resources, but instead we are regularly dismissed and talked over. Even those autists who are not exactly like a person's child likely have insight into why they would turn to aggression or self-harm, and what kind of pro-active things can be done to build an environment where the physical feelings that contribute to that behavior might be minimized. They've probably experienced those feelings themselves but may react to them differently, by stimming or isolating themselves or in any number of other ways.
As sciatrix wrote, Autistic children grow up to be Autistic adults. Every one of us knows what it is to be an Autistic child, and has a better understanding of Autistic children than allistic experts who observe our behavior and draw conclusions that have no foundation of understanding what we experience on the inside.
posted by ruetheday at 7:55 AM on August 2, 2019 [26 favorites]
The internet has made it possible for people who do not communicate verbally, cannot communicate verbally, or live with Selective Mutism to engage in conversation. We could be resources, but instead we are regularly dismissed and talked over. Even those autists who are not exactly like a person's child likely have insight into why they would turn to aggression or self-harm, and what kind of pro-active things can be done to build an environment where the physical feelings that contribute to that behavior might be minimized. They've probably experienced those feelings themselves but may react to them differently, by stimming or isolating themselves or in any number of other ways.
As sciatrix wrote, Autistic children grow up to be Autistic adults. Every one of us knows what it is to be an Autistic child, and has a better understanding of Autistic children than allistic experts who observe our behavior and draw conclusions that have no foundation of understanding what we experience on the inside.
posted by ruetheday at 7:55 AM on August 2, 2019 [26 favorites]
"Exposure to ABA predicted a higher rate and more severe PTSS [PTSD] in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers."
"Respondents of all ages who were exposed to ABA were 86% more likely to meet the PTSD criteria than respondents who were not exposed to ABA."
In other words, ABA is abusive and directly harms children in severe ways that persist long into adulthood, but their parents are still blithely convinced it's all sunshine and roses.
posted by talitha_kumi at 8:12 AM on August 2, 2019 [18 favorites]
"Respondents of all ages who were exposed to ABA were 86% more likely to meet the PTSD criteria than respondents who were not exposed to ABA."
In other words, ABA is abusive and directly harms children in severe ways that persist long into adulthood, but their parents are still blithely convinced it's all sunshine and roses.
posted by talitha_kumi at 8:12 AM on August 2, 2019 [18 favorites]
Mod note: Folks, if you have a problem with the behavior of your fellow mefites, take it to Metatalk or to the mods. It's not ok to just trash talk them because you're angry.
posted by restless_nomad (staff) at 8:36 AM on August 2, 2019 [5 favorites]
posted by restless_nomad (staff) at 8:36 AM on August 2, 2019 [5 favorites]
Many years ago, I used to work in autism research with little kids as a low-level staff member helping with diagnostics and recruitment. I helped steer a lot of young children into early intervention and for a lot of them that probably meant ABA, and I've run information booths at plenty of Autism Speaks Walks, and I know a lot about the parents I worked with, who were generally kind people with good intentions who wanted what they understood as the best for their children. They were trying hard and they meant well.
And they - and I - probably did a lot of harm, and I live with that as one of my major life regrets at this point. Because I finally spent enough time listening to, and reading the writings of, adult autistics to realize that there was a big part of the story that was not being glanced at, much less centered, in Autism Research World. At least in the corners of it I knew about. We did work with adults as well, and we did a lot of individual good for a lot of individual people who we helped with their housing situations and medical needs and court cases and just being a place they could come and be accepted and celebrated and have a safe, welcoming place to pass some time. I'm glad we did that. But. But. Those kids. I didn't know the history or current-day harmfulness of the practices I was recommending for them, and I don't know how they're doing now, and I hope that they're growing up okay and becoming happy children and will be adults living whatever a good life looks like to them, and I still think of them often. And I also think about how for the adults we worked with, we were not doing nearly enough on a big scale, whatever we were doing to help some individual people. The interventions and studies we were offering weren't driven or guided by the needs of actual autistic adults, the experts in the room - and it's a profound regret.
Also, these days my therapist and I are pretty sure I live somewhere on the spectrum myself, in a sub-clinical, learned-young-to-compensate-for-my-difficulties-well, few-support-needs way that's meant I haven't sought an official diagnosis. Complicates my feelings further.
All of which is just to say that I've spent time on multiple sides of the Is ABA Bad Actually discussion, and I'm pretty confident that I landed in the right place. I wish I'd gotten here sooner. I think for me, it was mostly just about committing to some really extended time of reading and listening to books and essays and tweets and videos by autistic people, and sitting with the discomfort and guilt that came out of that until I knew what the answer was that I could live with.
I'm not going to say there's no room for parents of people with autism in the conversation about therapies and assistance - but the balance is way the fuck off right now. Autistic people should be front and center in these conversations and there's no excuse for the lack of movement in that direction, after the years of hard work that so many people and organizations have put in advocating for this change.
posted by Stacey at 9:03 AM on August 2, 2019 [18 favorites]
And they - and I - probably did a lot of harm, and I live with that as one of my major life regrets at this point. Because I finally spent enough time listening to, and reading the writings of, adult autistics to realize that there was a big part of the story that was not being glanced at, much less centered, in Autism Research World. At least in the corners of it I knew about. We did work with adults as well, and we did a lot of individual good for a lot of individual people who we helped with their housing situations and medical needs and court cases and just being a place they could come and be accepted and celebrated and have a safe, welcoming place to pass some time. I'm glad we did that. But. But. Those kids. I didn't know the history or current-day harmfulness of the practices I was recommending for them, and I don't know how they're doing now, and I hope that they're growing up okay and becoming happy children and will be adults living whatever a good life looks like to them, and I still think of them often. And I also think about how for the adults we worked with, we were not doing nearly enough on a big scale, whatever we were doing to help some individual people. The interventions and studies we were offering weren't driven or guided by the needs of actual autistic adults, the experts in the room - and it's a profound regret.
Also, these days my therapist and I are pretty sure I live somewhere on the spectrum myself, in a sub-clinical, learned-young-to-compensate-for-my-difficulties-well, few-support-needs way that's meant I haven't sought an official diagnosis. Complicates my feelings further.
All of which is just to say that I've spent time on multiple sides of the Is ABA Bad Actually discussion, and I'm pretty confident that I landed in the right place. I wish I'd gotten here sooner. I think for me, it was mostly just about committing to some really extended time of reading and listening to books and essays and tweets and videos by autistic people, and sitting with the discomfort and guilt that came out of that until I knew what the answer was that I could live with.
I'm not going to say there's no room for parents of people with autism in the conversation about therapies and assistance - but the balance is way the fuck off right now. Autistic people should be front and center in these conversations and there's no excuse for the lack of movement in that direction, after the years of hard work that so many people and organizations have put in advocating for this change.
posted by Stacey at 9:03 AM on August 2, 2019 [18 favorites]
"I found out several months ago that my mother apparently fought tooth and nail to prevent any evidence of my diagnosis (age 12) from making it into my school records, even at the time I was diagnosed, when I had a fucking IEP. "
I believe you about your mom and her shame-driven avoidance, but another factor might be that when you and I were growing up, an official diagnosis like that could make you permanently uninsurable (in the US), before there were protections for pre-existing conditions as long as you had continuous coverage, and they could only deny your pre-existing condition for X months, and before Obamacare made it difficult for insurers to refuse to cover pre-existing conditions or to reject you as an insured for having one. A LOT of parents fought tooth and nail to prevent diagnoses from going in medical or educational records, and a lot of doctors and school officials helped them by giving vague and temporary diagnoses on official paperwork, so that the children wouldn't be denied coverage, dropped from parents' policies, or unable to get coverage on their own as adults. If the child could qualify for government disability benefits, a diagnosis was okay; otherwise, an official diagnosis might condemn your child to literal death by lack of health insurance.
Some people a little older than you and I were diagnosed as children and simply could never get insurance thereafter (until Obamacare). I know a couple people who finally had to move out of the US to get health insurance, because a childhood diagnosis of autism or similar things made them uninsurable. And there are tons of stories from that time of people who were covered under the same policy since they were BORN, who when the kid developed juvenile arthritis or got diagnosed with autism or another potentially-expensive condition, were told by insurers, "Sorry, that's a pre-existing condition, we won't cover it." And the family would say "DUDE SHE HAS BEEN ON THE POLICY SINCE SHE WAS CONCEIVED, THERE IS NO WAY IT IS PREEXISTING" but the insurer would fight dirty to get the kid excluded from coverage, and most parents couldn't afford to keep fighting too long.
Anyway, what she did is crappy and I'm sorry it happened to you. But it was also suuuuuuuuuper common for parents of that era who feared for their children's futures. Lots of grandparents today, who were parents during that era, struggle with their adult children having their young grandchildren get an official diagnosis, and talking so openly about it!, because the fear of a permanent diagnosis excluding you forever from health care coverage is so profoundly ingrained.
posted by Eyebrows McGee at 9:21 AM on August 2, 2019 [26 favorites]
I believe you about your mom and her shame-driven avoidance, but another factor might be that when you and I were growing up, an official diagnosis like that could make you permanently uninsurable (in the US), before there were protections for pre-existing conditions as long as you had continuous coverage, and they could only deny your pre-existing condition for X months, and before Obamacare made it difficult for insurers to refuse to cover pre-existing conditions or to reject you as an insured for having one. A LOT of parents fought tooth and nail to prevent diagnoses from going in medical or educational records, and a lot of doctors and school officials helped them by giving vague and temporary diagnoses on official paperwork, so that the children wouldn't be denied coverage, dropped from parents' policies, or unable to get coverage on their own as adults. If the child could qualify for government disability benefits, a diagnosis was okay; otherwise, an official diagnosis might condemn your child to literal death by lack of health insurance.
Some people a little older than you and I were diagnosed as children and simply could never get insurance thereafter (until Obamacare). I know a couple people who finally had to move out of the US to get health insurance, because a childhood diagnosis of autism or similar things made them uninsurable. And there are tons of stories from that time of people who were covered under the same policy since they were BORN, who when the kid developed juvenile arthritis or got diagnosed with autism or another potentially-expensive condition, were told by insurers, "Sorry, that's a pre-existing condition, we won't cover it." And the family would say "DUDE SHE HAS BEEN ON THE POLICY SINCE SHE WAS CONCEIVED, THERE IS NO WAY IT IS PREEXISTING" but the insurer would fight dirty to get the kid excluded from coverage, and most parents couldn't afford to keep fighting too long.
Anyway, what she did is crappy and I'm sorry it happened to you. But it was also suuuuuuuuuper common for parents of that era who feared for their children's futures. Lots of grandparents today, who were parents during that era, struggle with their adult children having their young grandchildren get an official diagnosis, and talking so openly about it!, because the fear of a permanent diagnosis excluding you forever from health care coverage is so profoundly ingrained.
posted by Eyebrows McGee at 9:21 AM on August 2, 2019 [26 favorites]
(And also that history of shitty health insurance industry practices should a) make us admire all the more early adult advocates for autism, neurodiversity, and mental health care in general, since just advocating for themselves and identifying their diagnosis could have made their health insurer drop them; and b) make us angrier at those in the US who want to roll back these hard-fought healthcare protections that ensure children to get adequate diagnosis and treatment without being discriminated against for the rest of their lives; advocating for a return to pre-Obamacare rules or systems is fundamentally anti-family and anti-child (and very ablist) and it's a flat-out lie to pretend otherwise.)
posted by Eyebrows McGee at 9:23 AM on August 2, 2019 [12 favorites]
posted by Eyebrows McGee at 9:23 AM on August 2, 2019 [12 favorites]
Thank you for this thread, ruetheday. I am several weeks away from starting a job as a school-based speech-language pathologist, and am sure to be working with Autistic students ranging from first graders through high schoolers. The information and perspectives in the links you've given us (particularly from the Autistic Advocate blog and Amethyst Schaber's videos), along with the experiences shared in this thread, are things I will work hard to honor in my practice. And I love the idea of replacing "high/low functioning" phrasing with framing that centers levels of support needs - will definitely incorporate that into my speech and writing.
I'm going to continue reading more from the blogs posted here and sources they cite to do better at listening to/prioritizing Autistic voices, but was also hoping to ask a question of any Autistic adults in this thread who would be willing to respond: based on your experiences in school, are there things you would like professionals in educational settings to know or do? I do have ideas based on my clinical experiences and readings to date, but again, I would be grateful to hear from Autistic individuals about the kinds of things that did or could have made a positive difference in their educational experiences.
If this is asking people to do 101-level education I apologize and will withdraw the request - I will be doing further reading on my own regardless - but I am very much listening and would like to do right by the people I will be serving.
posted by DingoMutt at 9:25 AM on August 2, 2019
I'm going to continue reading more from the blogs posted here and sources they cite to do better at listening to/prioritizing Autistic voices, but was also hoping to ask a question of any Autistic adults in this thread who would be willing to respond: based on your experiences in school, are there things you would like professionals in educational settings to know or do? I do have ideas based on my clinical experiences and readings to date, but again, I would be grateful to hear from Autistic individuals about the kinds of things that did or could have made a positive difference in their educational experiences.
If this is asking people to do 101-level education I apologize and will withdraw the request - I will be doing further reading on my own regardless - but I am very much listening and would like to do right by the people I will be serving.
posted by DingoMutt at 9:25 AM on August 2, 2019
Yeah, to be clear, her deliberately teaching me to hide absolutely came out of her fear for me as much as for her fear for herself. I don't know how much insurance played a role for her - - she was certainly willing to take me for a private evaluation on her own dime for gifted assessment, and I have the records from that now. But she was very afraid that if anyone knew, they would discriminate against me, and she was very explicit with me about that.
For the record, she acted in precisely the same way about my budding queerness and gender non conformity, and she passed me a lot of shame about that too in extremely similar ways. Toxic shame can and does come out of love. That doesn't mean it's not toxic, and it has played a massive role in my estrangement from my mother.
posted by sciatrix at 9:32 AM on August 2, 2019 [14 favorites]
For the record, she acted in precisely the same way about my budding queerness and gender non conformity, and she passed me a lot of shame about that too in extremely similar ways. Toxic shame can and does come out of love. That doesn't mean it's not toxic, and it has played a massive role in my estrangement from my mother.
posted by sciatrix at 9:32 AM on August 2, 2019 [14 favorites]
ruetheday, this is a such a fantastic post. Thank you so much for the extensive links and all the thoughtful words you placed around them.
I've been so heartened to learn that things are better and easier for many autistic kids now (sciatrix: " I see my students come up to me and say 'I'm autistic and I might not look you in the eye, I need that as an accommodation' "), and I hope that, as a society, we can make life better for autistic adults, too - and I'm hopeful that, if more autistic kids are growing up today with more respectful supports and less coercive environments, those kids will feel more empowered as adults to reshape the way we all relate to each other, so autistic adults don't have to mask all the time or conform to ignorant expectations.
I so value learning more about the lives of autistic people directly from Autists themselves. (I value learning about the lives of all kinds of people directly from those people themselves.) Thank you so much for sharing all of this, ruetheday (and everyone in this thread).
posted by kristi at 9:35 AM on August 2, 2019 [2 favorites]
I've been so heartened to learn that things are better and easier for many autistic kids now (sciatrix: " I see my students come up to me and say 'I'm autistic and I might not look you in the eye, I need that as an accommodation' "), and I hope that, as a society, we can make life better for autistic adults, too - and I'm hopeful that, if more autistic kids are growing up today with more respectful supports and less coercive environments, those kids will feel more empowered as adults to reshape the way we all relate to each other, so autistic adults don't have to mask all the time or conform to ignorant expectations.
I so value learning more about the lives of autistic people directly from Autists themselves. (I value learning about the lives of all kinds of people directly from those people themselves.) Thank you so much for sharing all of this, ruetheday (and everyone in this thread).
posted by kristi at 9:35 AM on August 2, 2019 [2 favorites]
Be kind.
Speak calmly.
Be completely honest.
Approach us with the assumption that we are intelligent.
Whatever we're doing, we're doing it for a reason. Assume we are doing our best.
Sometimes we can't process verbal input.
We might need to run around the room while you talk. That doesn't mean we're not paying attention.
Being stuck in a classroom, unable to escape the sensory input of the teacher, the other students, the lights, the supplies, the sound of pencils on desks, etc. is exhausting and sometimes painful. Proactively provide breaks in a quiet spot.
Remember that we hear you (barring hearing impairment) even if we seem to be holed up inside ourselves.
Some of us can't not hear every conversation within earshot. This makes it hard to grok the conversation we're involved in.
If we become overwhelmed, shut down, or have a meltdown, you should not try to talk to us, touch us, or do anything else that adds sensory input. Walk away. Find a way to let us have a break alone in a dim place or even the hallway.
Fan/air conditioning-like noises can be a source of bodily discomfort. The feel of air moving on our skin can too.
Play to our strengths.
Let us stim. If possible, provide a rocking chair or fidget toys or a mini trampoline.
Learn to understand the language of our stimming. Are we expressing happiness? Unhappiness? Or are we regulating ourselves, keeping ourselves grounded?
Never touch us without permission, and definitely not in a sudden, unexpected way. Instead say, 'would you like to shake hands?' or 'would you like a hug?' and make sure we're aware we can say no.
Invite us into conversation and play, with no expectations.
Providing regular snacks helps some of us stay a bit more steady in our mood.
Let us walk away without comment.
Say, I'm not sure how you feel about this, but if it doesn't feel good to you we can stop.
Don't make us the class's center of attention, unless we somehow express that's what we want.
Join us in playing the way we want to play.
There is a physical reality behind our Selective Mutism. Don't try to force us to speak. That doesn't necessarily mean we don't want anyone to talk to us, though. Make a different method of communication available.
Explain what you're trying to do and how you think it might help us. Give us a way to say, not now, please.
We are having physical responses to our current environment, not having tantrums.
posted by ruetheday at 10:15 AM on August 2, 2019 [45 favorites]
Speak calmly.
Be completely honest.
Approach us with the assumption that we are intelligent.
Whatever we're doing, we're doing it for a reason. Assume we are doing our best.
Sometimes we can't process verbal input.
We might need to run around the room while you talk. That doesn't mean we're not paying attention.
Being stuck in a classroom, unable to escape the sensory input of the teacher, the other students, the lights, the supplies, the sound of pencils on desks, etc. is exhausting and sometimes painful. Proactively provide breaks in a quiet spot.
Remember that we hear you (barring hearing impairment) even if we seem to be holed up inside ourselves.
Some of us can't not hear every conversation within earshot. This makes it hard to grok the conversation we're involved in.
If we become overwhelmed, shut down, or have a meltdown, you should not try to talk to us, touch us, or do anything else that adds sensory input. Walk away. Find a way to let us have a break alone in a dim place or even the hallway.
Fan/air conditioning-like noises can be a source of bodily discomfort. The feel of air moving on our skin can too.
Play to our strengths.
Let us stim. If possible, provide a rocking chair or fidget toys or a mini trampoline.
Learn to understand the language of our stimming. Are we expressing happiness? Unhappiness? Or are we regulating ourselves, keeping ourselves grounded?
Never touch us without permission, and definitely not in a sudden, unexpected way. Instead say, 'would you like to shake hands?' or 'would you like a hug?' and make sure we're aware we can say no.
Invite us into conversation and play, with no expectations.
Providing regular snacks helps some of us stay a bit more steady in our mood.
Let us walk away without comment.
Say, I'm not sure how you feel about this, but if it doesn't feel good to you we can stop.
Don't make us the class's center of attention, unless we somehow express that's what we want.
Join us in playing the way we want to play.
There is a physical reality behind our Selective Mutism. Don't try to force us to speak. That doesn't necessarily mean we don't want anyone to talk to us, though. Make a different method of communication available.
Explain what you're trying to do and how you think it might help us. Give us a way to say, not now, please.
We are having physical responses to our current environment, not having tantrums.
posted by ruetheday at 10:15 AM on August 2, 2019 [45 favorites]
Since people are asking about autistic perspectives on a variety of things, a good Google scholar search to do is:
A few things that search turns up (I haven't read/can't vouch for all of these articles, be mindful of research methods and biases, etc., but just as an example):
Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: Perceptions of their life experiences. Focus on autism and other developmental disabilities, 17(2), 103-111.
Barnett, J. P., & Maticka‐Tyndale, E. (2015). Qualitative exploration of sexual experiences among adults on the autism spectrum: implications for sex education. Perspectives on sexual and reproductive health, 47(4), 171-179.
Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., ... & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824-831.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462.
Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281-3294.
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.
Obviously, talking directly to autistic people, reading blogs and autobiographical writing, etc. are extremely important. But this is another way you can supplement your knowledge that doesn't require autistic people to take the time/energy to educate you in specific. If you're looking for information on a certain topic, you can always try adding it to the string--I used a very similar one for research on stigma and research on college experiences. You won't always get useful results, but it's always worth a shot. Remember to try variations of your topic since researchers use many different terms for the same subject: for example, for college I used something like (college OR university OR higher education OR postsecondary). Hope that's helpful to someone.
posted by brook horse at 10:25 AM on August 2, 2019 [26 favorites]
adult (autism OR autistic) (interview OR qualitative) (perspectives OR experiences)"Adult" is included because otherwise you'll get a ton of stuff on parent perspectives (you'll still get some this way, but less), and research asking autistic kids about their experiences is pretty much non-existent, so if you want autistic perspectives, limiting it to adult helps. There's some research on older teens, but I've found adding that search term seriously muddies the results, so you've gotta be willing to dig for that. Just doing "-parent" doesn't work because then you get "perspectives of physicians" "perspectives of speech-language pathologists" "perspectives of teachers" etc. You can also change it to (interview OR qualitative OR survey) but those tend to be Likert-scale data with questions defined by the researchers, so it doesn't always offer as much as interviews. There can still be useful information there, it just might require more sifting.
A few things that search turns up (I haven't read/can't vouch for all of these articles, be mindful of research methods and biases, etc., but just as an example):
Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: Perceptions of their life experiences. Focus on autism and other developmental disabilities, 17(2), 103-111.
Barnett, J. P., & Maticka‐Tyndale, E. (2015). Qualitative exploration of sexual experiences among adults on the autism spectrum: implications for sex education. Perspectives on sexual and reproductive health, 47(4), 171-179.
Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., ... & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824-831.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462.
Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281-3294.
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.
Obviously, talking directly to autistic people, reading blogs and autobiographical writing, etc. are extremely important. But this is another way you can supplement your knowledge that doesn't require autistic people to take the time/energy to educate you in specific. If you're looking for information on a certain topic, you can always try adding it to the string--I used a very similar one for research on stigma and research on college experiences. You won't always get useful results, but it's always worth a shot. Remember to try variations of your topic since researchers use many different terms for the same subject: for example, for college I used something like (college OR university OR higher education OR postsecondary). Hope that's helpful to someone.
posted by brook horse at 10:25 AM on August 2, 2019 [26 favorites]
can i expand on "Be completely honest." a bit?
don't assume we're going to recognize hyperbole.
(i hear insurance coordinator grumping about someone injuring themselves trying to move a 400lb thing by themselves, i dutifully note that in the accident report, thing is not actually 400lbs and that accident report is now part of a court case...)
say what you actually intend.
(guy approaches me wanting to start a flirtation and asks me what time it is. i tell him the time and then go on my way, because he has what he said he wanted.)
hi, metafilter. undiagnosed middle-aged woman who quit her job in a fit of burn-out three years ago and isn't really doing well right now.
posted by Clowder of bats at 12:05 PM on August 2, 2019 [19 favorites]
don't assume we're going to recognize hyperbole.
(i hear insurance coordinator grumping about someone injuring themselves trying to move a 400lb thing by themselves, i dutifully note that in the accident report, thing is not actually 400lbs and that accident report is now part of a court case...)
say what you actually intend.
(guy approaches me wanting to start a flirtation and asks me what time it is. i tell him the time and then go on my way, because he has what he said he wanted.)
hi, metafilter. undiagnosed middle-aged woman who quit her job in a fit of burn-out three years ago and isn't really doing well right now.
posted by Clowder of bats at 12:05 PM on August 2, 2019 [19 favorites]
To quote Lovaas, "You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - but they are not people in the psychological sense...
To quote Pratchett, "And sin, young man, is when you treat people like things."
posted by flabdablet at 12:22 PM on August 2, 2019 [20 favorites]
To quote Pratchett, "And sin, young man, is when you treat people like things."
posted by flabdablet at 12:22 PM on August 2, 2019 [20 favorites]
Thank you for this. My toddler has a severe epilepsy syndrome for which one of the common comorbidities is autism spectrum disorders, and the parent groups I'm in for this syndrome talk a lot about ABA therapy so I was very aware of it without knowing the details. I'm so thankful to find out how harmful that can be and to stay the fuck away from it if and when my son gets to that point. I had no idea how traumatic it could be, and certainly no idea that it was connected to conversion therapy, so I feel very comfortable noping him right out of that if and when it comes up. Really appreciate the education and the opportunity to protect my dude.
I've also learned a lot from @EbThen on Twitter, if any other folks like me want to add to their lists of autistic adults to listen to on a regular basis.
posted by olinerd at 12:29 PM on August 2, 2019 [6 favorites]
I've also learned a lot from @EbThen on Twitter, if any other folks like me want to add to their lists of autistic adults to listen to on a regular basis.
posted by olinerd at 12:29 PM on August 2, 2019 [6 favorites]
Thanks, brook horse, for providing some indications on sources. I don't know all of them myself, but I am a neurodivergent scholar (unsure on whether autistic) and have also researched on autism (mostly with tech contexts). There are actually quite a few autistic scholars and I am really bad at remembering names, but here are some that I found fundamentally helpful:
Really anything by Melanie Yergau.
Damian Milton's discussion of the Double Empathy Problem as well as a discussion of autistic expertise.
And there is also Rua Williams' profound critique of the notion of consequences in assistive tech research.
And, maybe just tangentially relevant, but also always very affirming for me personally, to read is just this dialogue between Mad Studies and Neurodiversity (open access!).
If you can't access one, but want to, let me know.
posted by katta at 1:11 PM on August 2, 2019 [7 favorites]
Really anything by Melanie Yergau.
Damian Milton's discussion of the Double Empathy Problem as well as a discussion of autistic expertise.
And there is also Rua Williams' profound critique of the notion of consequences in assistive tech research.
And, maybe just tangentially relevant, but also always very affirming for me personally, to read is just this dialogue between Mad Studies and Neurodiversity (open access!).
If you can't access one, but want to, let me know.
posted by katta at 1:11 PM on August 2, 2019 [7 favorites]
I was an ABA "therapist" for quite a few years. A supervisor encouraged me to go to school to get the master's degree myself. I got out of the field before I started reading the accounts of adults who had been through ABA themselves and have been horrified ever sense.
The first place I worked seemed great. Part of my training was a discussion of shock therapy and how awful it was. We didn't discourage stimming during "free time." I saw what seemed to be improvements in social interactions. The other company I worked for still makes me feel uncomfortable.
Thanks to everyone for the overview of resources. I used to feel angry with myself when reading these types of stories, but I hope to spread the word.
posted by missriss89 at 7:22 PM on August 2, 2019 [5 favorites]
The first place I worked seemed great. Part of my training was a discussion of shock therapy and how awful it was. We didn't discourage stimming during "free time." I saw what seemed to be improvements in social interactions. The other company I worked for still makes me feel uncomfortable.
Thanks to everyone for the overview of resources. I used to feel angry with myself when reading these types of stories, but I hope to spread the word.
posted by missriss89 at 7:22 PM on August 2, 2019 [5 favorites]
Being stuck in a classroom, unable to escape the sensory input of the teacher, the other students, the lights, the supplies, the sound of pencils on desks, etc. is exhausting and sometimes painful. Proactively provide breaks in a quiet spot.
Remember that we hear you (barring hearing impairment) even if we seem to be holed up inside ourselves.
Some of us can't not hear every conversation within earshot. This makes it hard to grok the conversation we're involved in.
I can second this. When I got my autism diagnosis, it was explained to me that the main factor that distinguished autism from Asperger's was having an auditory processing deficit, typically a deficit that requires the autist to take an extra 10-15 seconds processing sounds and speech before they can understand what was said. I don't know if that's a true differentiating factor for people on the spectrum in general, but it is true for me. I can hear air conditioners, fluorescent lights, feet on the carpet, you name it. Most of the time I'm blocking this out entirely, because I can't function otherwise. So if an autistic person is slow to respond to you, it may very well be because they need to mentally block out a lot more stimuli than you do, just to be able to concentrate on a most basic level. This can give autists an enviably heightened ability to focus on task, but dear God, can it be exhausting.
Similarly, conversations can be hard for us in public spaces, because we don't just hear you (although we do hear you & we're trying to listen), but we may be hearing every single conversation in the room at the same time, not because we're eavesdropping, because we can't not hear it.
posted by jonp72 at 7:25 PM on August 2, 2019 [13 favorites]
Remember that we hear you (barring hearing impairment) even if we seem to be holed up inside ourselves.
Some of us can't not hear every conversation within earshot. This makes it hard to grok the conversation we're involved in.
I can second this. When I got my autism diagnosis, it was explained to me that the main factor that distinguished autism from Asperger's was having an auditory processing deficit, typically a deficit that requires the autist to take an extra 10-15 seconds processing sounds and speech before they can understand what was said. I don't know if that's a true differentiating factor for people on the spectrum in general, but it is true for me. I can hear air conditioners, fluorescent lights, feet on the carpet, you name it. Most of the time I'm blocking this out entirely, because I can't function otherwise. So if an autistic person is slow to respond to you, it may very well be because they need to mentally block out a lot more stimuli than you do, just to be able to concentrate on a most basic level. This can give autists an enviably heightened ability to focus on task, but dear God, can it be exhausting.
Similarly, conversations can be hard for us in public spaces, because we don't just hear you (although we do hear you & we're trying to listen), but we may be hearing every single conversation in the room at the same time, not because we're eavesdropping, because we can't not hear it.
posted by jonp72 at 7:25 PM on August 2, 2019 [13 favorites]
This is what I remember. When I was in 4th grade I was placed into the gifted and talented program. I was not then and have never been formally diagnosed with autism, but I am most definitely on the spectrum and definitely have SPD. Anyway, I got grouped with and sat next to the other kids in GT who were much more visibly autistic than myself. I remember my friend Jon. Near the end of 5th grade Jon started spending only half days with us and the other half in some kind of special program. We all knew he was autistic because he had nonverbal days and stimmed and was accommodated in a lot of ways in 4th grade, but in 5th grade he wasn't, and he told us the half days were some kind of therapy.
6th grade, he was back full time for about three months. Jon was different. He was very quiet, and didn't stim, and didn't like me anymore. I tried to talk to him at lunch and write with him in our shared scribble language, I gave him little gifts - we collected little shaped erasers and origami - he refused all overtures and separated himself further from me and the other uncool GT kids. My parents told me it was probably a puberty thing, I knew full well how annoying kids get in middle school and that was just next year so maybe he was an early bloomer? He was tall, after all. Three months into 6th grade Jon had an absolute meltdown. Full on screaming raging rocking nonverbal everything. We were all going to lunch and he wouldn't go. I stayed right outside the room, ate lunch in the hallway, listening to him scream and our teacher kibbitz, until his parents rushed in. He wasn't in school for months and months. He finally came back for a few half days during which in retrospect I realize he was drugged to the gills, for special occasion stuff. Our closest mutual friend Ben told me that he saw Jon sometimes at their after school "programs" but that he wasn't dealing well.
I know what happened to Jon at the time, now. I don't know what became of him as an adult, and I can't remember his last name. But Jon was my first noticeably autistic friend, and spending time with him primed me for naturally befriending other autistic folks throughout my whole life. I know now that it's also because I'm part of the tribe in my own wonky way, but I'm really grateful to Jon and I hope to hell he's been able to work through the bullshit that he was forced to endure.
posted by Mizu at 9:41 PM on August 2, 2019 [18 favorites]
6th grade, he was back full time for about three months. Jon was different. He was very quiet, and didn't stim, and didn't like me anymore. I tried to talk to him at lunch and write with him in our shared scribble language, I gave him little gifts - we collected little shaped erasers and origami - he refused all overtures and separated himself further from me and the other uncool GT kids. My parents told me it was probably a puberty thing, I knew full well how annoying kids get in middle school and that was just next year so maybe he was an early bloomer? He was tall, after all. Three months into 6th grade Jon had an absolute meltdown. Full on screaming raging rocking nonverbal everything. We were all going to lunch and he wouldn't go. I stayed right outside the room, ate lunch in the hallway, listening to him scream and our teacher kibbitz, until his parents rushed in. He wasn't in school for months and months. He finally came back for a few half days during which in retrospect I realize he was drugged to the gills, for special occasion stuff. Our closest mutual friend Ben told me that he saw Jon sometimes at their after school "programs" but that he wasn't dealing well.
I know what happened to Jon at the time, now. I don't know what became of him as an adult, and I can't remember his last name. But Jon was my first noticeably autistic friend, and spending time with him primed me for naturally befriending other autistic folks throughout my whole life. I know now that it's also because I'm part of the tribe in my own wonky way, but I'm really grateful to Jon and I hope to hell he's been able to work through the bullshit that he was forced to endure.
posted by Mizu at 9:41 PM on August 2, 2019 [18 favorites]
My therapist says there are no peer-reviewed articles on "autistic burnout", and so he denies it exists. What a pity, as it explains a lot of the instability in my life.
posted by Goofyy at 3:08 AM on August 5, 2019 [4 favorites]
posted by Goofyy at 3:08 AM on August 5, 2019 [4 favorites]
taquito sunrise wrote: So before you start using rewards & punishments on your kid it might be worth looking into whether they really want to be able to do the thing but are finding it harder than you personally would expect it to be, and giving them whatever support might help with that.
This principle, it seems to me, is right at the heart of all skilful parenting.
Because when it comes right down to it, every child's neurological organization is quite different from that of their parents, and their mutual theories of mind are going to be badly wrong more often than not unless there is frequent and deliberate cross-checking. And until the child becomes capable of building accurate theories of mind for those who surround them - which the overwhelming majority will do quite quickly, if given the right support - it has to be the parents who lead by example, and who do more of the listening and less of the talking. They are, after all, the ones who have had the time to accumulate the life experience to let them grasp the need for it.
Those of us who can get away with describing ourselves as neurotypical frequently make very large demands indeed on those whose brains work differently from ours, especially children; demands calling for a degree of emotional labour that we would never even dream of imposing on ourselves. Especially with autistic kids, the standard practice seems to be to "help" them by shovelling How The Neurotypical Do down their tiny throats at a pace and intensity that they are simply not in a position to deal with, then acting all baffled and distraught when they crumble under the onslaught in a way that should have been seen coming and steered away from years earlier.
A better use of time for all concerned, it seems to me, would be for parents to make a conscious policy of spending the majority of their time on learning How My Child Do, thereby gaining the ability to avoid making everything worse for everybody by wasting increasing amounts of time and effort on trying to solve the wrong problems.
Thinking of autism as a disorder is the same class of error, to my way of thinking, as thinking of indigenous civilizations as primitive. There's an all-pervading assumption underlying both these mistakes that where they are right now is the same as some stage in my own developmental history, that my experience - be that personal or cultural - is the correct experience, that my methods are the correct methods, and that what I think of as the right thing would therefore be the right thing for them as well if only they weren't so backward and/or goddamned unreasonable.
From which it follows that such violence as I inflict in pursuit of persuading the Other to get with the program isn't really violence because it's "for their own good", which makes any reaction to that violence as if it actually were violence unwarranted and unacceptable and too often seen as justification for inflicting another round of it.
This has always been a travesty and a tragedy. All of us make this kind of error to some extent, and it cuts us all off from so much that is valuable and so much we could learn from.
If you don't think the same way as I do, you're going to notice things I don't and vice versa. You're going to have skills I don't and vice versa. You're going to want things I don't and vice versa. There is stuff you'd deal with as a matter of course that would push me into meltdown and vice versa. You're going to spot my self-destructive habits before I do and vice versa. You and I are potentially going to be of much more use to each other than we would be if we were alike. But for as long as either of us insists on seeing the other as broken and wrong, that potential will remain unrealized.
You want your autistic child to stop screaming and pounding his head against the walls? Maybe spend a little time figuring out what you would need to be experiencing in order to make behaving that way seem like your best option. Odds on it would be a sense of utterly powerless rage and overwhelming frustration, and there will be something in the child's environment that has been niggling and chipping away at them for years and years and years before they've reached that point. Something you never even noticed because your brain works differently from theirs. Something you damn well need to find and fix pretty damn pronto and make sure it stays fixed. Because your child is and always has been a person, not a blank slate on which you or that pompous dickhead Lovaas are entitled to write any old script you like, and your home should be their shelter and their refuge every bit as much as it is yours.
Anybody who ever said raising children is easy is a damn liar. But it's the most consequential work any of us ever do, and the only real regret I have at 57 years old is that I wasn't better at it sooner.
posted by flabdablet at 5:27 AM on August 5, 2019 [8 favorites]
This principle, it seems to me, is right at the heart of all skilful parenting.
Because when it comes right down to it, every child's neurological organization is quite different from that of their parents, and their mutual theories of mind are going to be badly wrong more often than not unless there is frequent and deliberate cross-checking. And until the child becomes capable of building accurate theories of mind for those who surround them - which the overwhelming majority will do quite quickly, if given the right support - it has to be the parents who lead by example, and who do more of the listening and less of the talking. They are, after all, the ones who have had the time to accumulate the life experience to let them grasp the need for it.
Those of us who can get away with describing ourselves as neurotypical frequently make very large demands indeed on those whose brains work differently from ours, especially children; demands calling for a degree of emotional labour that we would never even dream of imposing on ourselves. Especially with autistic kids, the standard practice seems to be to "help" them by shovelling How The Neurotypical Do down their tiny throats at a pace and intensity that they are simply not in a position to deal with, then acting all baffled and distraught when they crumble under the onslaught in a way that should have been seen coming and steered away from years earlier.
A better use of time for all concerned, it seems to me, would be for parents to make a conscious policy of spending the majority of their time on learning How My Child Do, thereby gaining the ability to avoid making everything worse for everybody by wasting increasing amounts of time and effort on trying to solve the wrong problems.
Thinking of autism as a disorder is the same class of error, to my way of thinking, as thinking of indigenous civilizations as primitive. There's an all-pervading assumption underlying both these mistakes that where they are right now is the same as some stage in my own developmental history, that my experience - be that personal or cultural - is the correct experience, that my methods are the correct methods, and that what I think of as the right thing would therefore be the right thing for them as well if only they weren't so backward and/or goddamned unreasonable.
From which it follows that such violence as I inflict in pursuit of persuading the Other to get with the program isn't really violence because it's "for their own good", which makes any reaction to that violence as if it actually were violence unwarranted and unacceptable and too often seen as justification for inflicting another round of it.
This has always been a travesty and a tragedy. All of us make this kind of error to some extent, and it cuts us all off from so much that is valuable and so much we could learn from.
If you don't think the same way as I do, you're going to notice things I don't and vice versa. You're going to have skills I don't and vice versa. You're going to want things I don't and vice versa. There is stuff you'd deal with as a matter of course that would push me into meltdown and vice versa. You're going to spot my self-destructive habits before I do and vice versa. You and I are potentially going to be of much more use to each other than we would be if we were alike. But for as long as either of us insists on seeing the other as broken and wrong, that potential will remain unrealized.
You want your autistic child to stop screaming and pounding his head against the walls? Maybe spend a little time figuring out what you would need to be experiencing in order to make behaving that way seem like your best option. Odds on it would be a sense of utterly powerless rage and overwhelming frustration, and there will be something in the child's environment that has been niggling and chipping away at them for years and years and years before they've reached that point. Something you never even noticed because your brain works differently from theirs. Something you damn well need to find and fix pretty damn pronto and make sure it stays fixed. Because your child is and always has been a person, not a blank slate on which you or that pompous dickhead Lovaas are entitled to write any old script you like, and your home should be their shelter and their refuge every bit as much as it is yours.
Anybody who ever said raising children is easy is a damn liar. But it's the most consequential work any of us ever do, and the only real regret I have at 57 years old is that I wasn't better at it sooner.
posted by flabdablet at 5:27 AM on August 5, 2019 [8 favorites]
Oh yeah, another 57-year-old perspective thing: if you've been bemoaning your child's unwillingness to read and you're currently trying incentive/disincentive techniques to get them off their screen and into a book, then you need to acquire a set of cheap reading glasses with completely the wrong strength for you, stick them on your face, and try to read the newspaper.
It's way too easy for those of us who find any given thing easy to underestimate the consequences of finding it difficult. And there are countless ways for consuming text to be at least as difficult as it is for you with bogus glasses on, most of which simple focus correction won't even begin to touch. Finding appropriate workarounds for the actual issue works way way way better than carrot-and-stick behaviourist bullshit.
posted by flabdablet at 7:34 AM on August 5, 2019 [4 favorites]
It's way too easy for those of us who find any given thing easy to underestimate the consequences of finding it difficult. And there are countless ways for consuming text to be at least as difficult as it is for you with bogus glasses on, most of which simple focus correction won't even begin to touch. Finding appropriate workarounds for the actual issue works way way way better than carrot-and-stick behaviourist bullshit.
posted by flabdablet at 7:34 AM on August 5, 2019 [4 favorites]
My therapist says there are no peer-reviewed articles on "autistic burnout", and so he denies it exists. What a pity, as it explains a lot of the instability in my life.
The horrible thing about that is that autism research is so toxically centered around the needs and desires and thoughts of allistic people that it actively deters autistic scientists from studying it. I don't study autism; I don't even study humans. Research is full of autistic people, though, historically and currently: I know for a fact that one of my year mates in a class of eighteen was also diagnosed on the spectrum, and of the academics in my department I work closely with, I can think of at least half a dozen people who scream various levels of autism or ADHD at me. There is a reason they used to call it "Little Professor" syndrome: there are so many autistic Big Professors that there is something of a stereotype.
But autism research and its peer reviewed literature is so dehumanizing and bad that I often find that reading it induces dissassociation. Maybe if you don't know there is a label for people like you it's okay, but I often find when reading anything about autism that there is a very clear, very obvious assumption that there is no one reading along who could possibly ID as the same category as the client population, and certainly no one who might be a girl autistic or a queer autistic or anything of that sort.
(Simon Baron Cohen can suck my flaps; I have rarely read an academic who is so prolifically and confidently wrong about the topics he studies.)
When I was in undergrad thinking about what disciplines I wanted to go into, I knew I wanted to look at some intersection of behavior and genetics. There were a lot of places I could have gone and done good work. I wound up in animal work, the kind focused on animals and what they are doing from their own perspectives, for two reasons. One was that I was afraid of fucking it up and hurting people. The other, of course, is that being a lab rat with the ability to read and form opinions on the papers that are trying to understand you in the confident belief that you can't talk sucks and I don't want to do it.
posted by sciatrix at 7:44 AM on August 5, 2019 [12 favorites]
The horrible thing about that is that autism research is so toxically centered around the needs and desires and thoughts of allistic people that it actively deters autistic scientists from studying it. I don't study autism; I don't even study humans. Research is full of autistic people, though, historically and currently: I know for a fact that one of my year mates in a class of eighteen was also diagnosed on the spectrum, and of the academics in my department I work closely with, I can think of at least half a dozen people who scream various levels of autism or ADHD at me. There is a reason they used to call it "Little Professor" syndrome: there are so many autistic Big Professors that there is something of a stereotype.
But autism research and its peer reviewed literature is so dehumanizing and bad that I often find that reading it induces dissassociation. Maybe if you don't know there is a label for people like you it's okay, but I often find when reading anything about autism that there is a very clear, very obvious assumption that there is no one reading along who could possibly ID as the same category as the client population, and certainly no one who might be a girl autistic or a queer autistic or anything of that sort.
(Simon Baron Cohen can suck my flaps; I have rarely read an academic who is so prolifically and confidently wrong about the topics he studies.)
When I was in undergrad thinking about what disciplines I wanted to go into, I knew I wanted to look at some intersection of behavior and genetics. There were a lot of places I could have gone and done good work. I wound up in animal work, the kind focused on animals and what they are doing from their own perspectives, for two reasons. One was that I was afraid of fucking it up and hurting people. The other, of course, is that being a lab rat with the ability to read and form opinions on the papers that are trying to understand you in the confident belief that you can't talk sucks and I don't want to do it.
posted by sciatrix at 7:44 AM on August 5, 2019 [12 favorites]
I have rarely read an academic who is so prolifically and confidently wrong about the topics he studies
The idea that autists are characterized by an inability to form a workable model of minds different from their own is about as clear a case of projection as any I've seen.
posted by flabdablet at 8:58 AM on August 5, 2019 [17 favorites]
The idea that autists are characterized by an inability to form a workable model of minds different from their own is about as clear a case of projection as any I've seen.
posted by flabdablet at 8:58 AM on August 5, 2019 [17 favorites]
I mean, you can say it; if I do, it's too inflammatory. There is so much pressure, here and elsewhere, to make room for and accommodate allistic people's emotions, and the amount of backbending to soothe allistic defensiveness is purely exhausting.
It doesn't strike me as unusual that, in a very long and multifaceted comment on autistic experience and discussion, the first and most engaged response was checking to see if I'd considered a potential aspect of a parental viewpoint. And I had! But... The knock on effects of that kind of shame don't get talked about. The cumulative effects of being told that revealing huge swathes of who you are and how you speak and how you experience the world is inherently shameful and embarrassing don't get talked about. I've been told I'm embarrassing so many times, explicitly and implicitly, that the belief that I am to many people embarrassing (but, at least, maybe cute enough to tolerate the shame of my many errors and tendency to drone on) is a casual part of my self assessment.
And before you rush to tell me that I am mistaken about that, or that you're sure the many people who endeavored to teach me social skills by insisting I learn to hide my embarrassing pleasures meant well, consider that meaning well is not an all healing panacea. I know many people meant well. That does not mean that I must absolve them from responsibility for their actions, any more than my meaning well means that I am free of consequences for mine.
posted by sciatrix at 10:01 AM on August 5, 2019 [7 favorites]
It doesn't strike me as unusual that, in a very long and multifaceted comment on autistic experience and discussion, the first and most engaged response was checking to see if I'd considered a potential aspect of a parental viewpoint. And I had! But... The knock on effects of that kind of shame don't get talked about. The cumulative effects of being told that revealing huge swathes of who you are and how you speak and how you experience the world is inherently shameful and embarrassing don't get talked about. I've been told I'm embarrassing so many times, explicitly and implicitly, that the belief that I am to many people embarrassing (but, at least, maybe cute enough to tolerate the shame of my many errors and tendency to drone on) is a casual part of my self assessment.
And before you rush to tell me that I am mistaken about that, or that you're sure the many people who endeavored to teach me social skills by insisting I learn to hide my embarrassing pleasures meant well, consider that meaning well is not an all healing panacea. I know many people meant well. That does not mean that I must absolve them from responsibility for their actions, any more than my meaning well means that I am free of consequences for mine.
posted by sciatrix at 10:01 AM on August 5, 2019 [7 favorites]
There is so much pressure, here and elsewhere, to make room for and accommodate allistic people's emotions
The thing that burns me the worst about that is that there is so close to zero accommodation made in the other direction, and I'm not even an autist.
I can give myself a glimmer of understanding of how it would be to live on the more punishing side of that asymmetry by imagining how I would end up behaving if kindly informed, over and over and over without letup that of all the quirky things I do notice more than the people around me, those I find intensely distressing (a) are objectively not distressing and (b) would not distress me either if only I would try harder to Be Normal. I can tell you right now, my behaviour under those circumstances would be ugly.
To have met so many people handling a lifetime's worth of that kind of shit from the rest of us and not spending all day every day in total meltdown fills me with awe at their strength of character. These are not disordered people. These are strong people.
And for fuck's sake, if even I can get even that far just by paying attention to what the autists I encounter have to say about how things are for them, what the fuck is Baron-Cohen's excuse?
posted by flabdablet at 10:35 AM on August 5, 2019 [8 favorites]
The thing that burns me the worst about that is that there is so close to zero accommodation made in the other direction, and I'm not even an autist.
I can give myself a glimmer of understanding of how it would be to live on the more punishing side of that asymmetry by imagining how I would end up behaving if kindly informed, over and over and over without letup that of all the quirky things I do notice more than the people around me, those I find intensely distressing (a) are objectively not distressing and (b) would not distress me either if only I would try harder to Be Normal. I can tell you right now, my behaviour under those circumstances would be ugly.
To have met so many people handling a lifetime's worth of that kind of shit from the rest of us and not spending all day every day in total meltdown fills me with awe at their strength of character. These are not disordered people. These are strong people.
And for fuck's sake, if even I can get even that far just by paying attention to what the autists I encounter have to say about how things are for them, what the fuck is Baron-Cohen's excuse?
posted by flabdablet at 10:35 AM on August 5, 2019 [8 favorites]
Related: ASAN ends partnership with Sesame Street.
Someone I know has been closely involved with that project; I wonder what this will mean for her continued participation. I know she is no fan of Autism Speaks.
posted by Superplin at 11:20 AM on August 5, 2019 [6 favorites]
Someone I know has been closely involved with that project; I wonder what this will mean for her continued participation. I know she is no fan of Autism Speaks.
posted by Superplin at 11:20 AM on August 5, 2019 [6 favorites]
The horrible thing about that is that autism research is so toxically centered around the needs and desires and thoughts of allistic people that it actively deters autistic scientists from studying it.
So, I am actually doing that (in tech contexts) and it definitely is infuriating, panic inducing or making me despair, doing these literature analyses. I recently had a paper accepted that provides a critical review on technology for autistic children and, basically, 98% of those are trying to 'intervene' or 'provide therapy'. They are not even actually for autistic children, they are for their neurotypically structured environment to communicate their expectations. And the language used is profoundly patronising and demeaning.
I am currently also doing one on ADHD and tech and am encountering similar issues where I (and all my neurodivergent co-authors) need to disengage from the project for weeks at a time because the papers are also indicating, on a very profound level, how our colleagues think of us. Now add that to the terror of being out as neurodivergent and on the academic job market as a post doc. Cannot recommend.
posted by katta at 1:08 PM on August 7, 2019 [13 favorites]
So, I am actually doing that (in tech contexts) and it definitely is infuriating, panic inducing or making me despair, doing these literature analyses. I recently had a paper accepted that provides a critical review on technology for autistic children and, basically, 98% of those are trying to 'intervene' or 'provide therapy'. They are not even actually for autistic children, they are for their neurotypically structured environment to communicate their expectations. And the language used is profoundly patronising and demeaning.
I am currently also doing one on ADHD and tech and am encountering similar issues where I (and all my neurodivergent co-authors) need to disengage from the project for weeks at a time because the papers are also indicating, on a very profound level, how our colleagues think of us. Now add that to the terror of being out as neurodivergent and on the academic job market as a post doc. Cannot recommend.
posted by katta at 1:08 PM on August 7, 2019 [13 favorites]
Christ, I can imagine. You know, a friend of mine in EEB and I have been putting together a disability-focused Slack for academics after a pan-disability lunch meeting at Evolution went really well. Do you think a space like that would be helpful at all for any of you all? It can be so lonely trying to even find one another to talk and connect and share ideas, when everyone is so terrified of the discrimination.
I cannot imagine how brave y'all are. I have barely been able to handle this conversation; I... wow, y'all are doing good work.
posted by sciatrix at 3:20 PM on August 7, 2019
I cannot imagine how brave y'all are. I have barely been able to handle this conversation; I... wow, y'all are doing good work.
posted by sciatrix at 3:20 PM on August 7, 2019
So, I am actually doing that (in tech contexts) and it definitely is infuriating, panic inducing or making me despair, doing these literature analyses.
Also do this research, can confirm. I am slightly insulated because my research is qualitative “what do autistic people have to say about x?” and most of my supporting literature is similar work, which is not universally good but has a higher chance of not being horribly shitty just by virtue of the researcher thinking to ask autistic people's perspectives. But, as you can imagine, there’s often not enough of this kind of literature and then I have to dip into the other stuff and oh boy... the parent literature, y’all. The massive, massive literature on parents’ experiences, which just amounts to “I’m ashamed and fed up with my kid” over and over and over and over. It’s exhausting, it's hurtful, it's just awful.
I'm also out as "cognitively disabled" (but nothing more specific) in my clinical psychology program because we had a diversity town hall and I said fuck it, which may or may not have been a good idea. Luckily everyone is steadfastedly ignoring it's a thing and still saying shit like "how did [client] get through college if they're ADHD/autistic/depressed/disabled?" while I'm RIGHT THERE. Literally had a supervisor say a client couldn't be disabled because then she wouldn't have gotten through grade school (despite a DOCUMENTED IEP???). And yet I was not brave enough to point out that I'm disabled and in grad school in that moment.
Do you think a space like that would be helpful at all for any of you all?
I would LOVE this.
posted by brook horse at 5:55 AM on August 8, 2019 [9 favorites]
Also do this research, can confirm. I am slightly insulated because my research is qualitative “what do autistic people have to say about x?” and most of my supporting literature is similar work, which is not universally good but has a higher chance of not being horribly shitty just by virtue of the researcher thinking to ask autistic people's perspectives. But, as you can imagine, there’s often not enough of this kind of literature and then I have to dip into the other stuff and oh boy... the parent literature, y’all. The massive, massive literature on parents’ experiences, which just amounts to “I’m ashamed and fed up with my kid” over and over and over and over. It’s exhausting, it's hurtful, it's just awful.
I'm also out as "cognitively disabled" (but nothing more specific) in my clinical psychology program because we had a diversity town hall and I said fuck it, which may or may not have been a good idea. Luckily everyone is steadfastedly ignoring it's a thing and still saying shit like "how did [client] get through college if they're ADHD/autistic/depressed/disabled?" while I'm RIGHT THERE. Literally had a supervisor say a client couldn't be disabled because then she wouldn't have gotten through grade school (despite a DOCUMENTED IEP???). And yet I was not brave enough to point out that I'm disabled and in grad school in that moment.
Do you think a space like that would be helpful at all for any of you all?
I would LOVE this.
posted by brook horse at 5:55 AM on August 8, 2019 [9 favorites]
Well, then; if anyone is interested in such a space, drop me a MeMail with an email address and I'll send you an invite. It's an itty bitty space right now but it's good to have a place to talk about stuff and vent where people will Get It.
(I'm not necessarily out in my broader workplace, but I also got to host a "mental health and the ADA" discussion series in which I maybe disclosed more than I should have--and oh, the feeling of "ah, yes, disclosure may or may have been a good idea" is... relatable. I'm also always trying to calibrate how much people around me actually know about neurodiverse presentations beyond, like, a list of DSM characteristics and a stereotype--so many of those diagnostic criteria descriptions really don't help people apply a sense for what they look like in actual human adults who have been responding to their environment for a while, you know?)
posted by sciatrix at 8:21 AM on August 8, 2019 [2 favorites]
(I'm not necessarily out in my broader workplace, but I also got to host a "mental health and the ADA" discussion series in which I maybe disclosed more than I should have--and oh, the feeling of "ah, yes, disclosure may or may have been a good idea" is... relatable. I'm also always trying to calibrate how much people around me actually know about neurodiverse presentations beyond, like, a list of DSM characteristics and a stereotype--so many of those diagnostic criteria descriptions really don't help people apply a sense for what they look like in actual human adults who have been responding to their environment for a while, you know?)
posted by sciatrix at 8:21 AM on August 8, 2019 [2 favorites]
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/chinhands/
/autistic
posted by a power-tie-wearing she-capitalist at 7:16 PM on August 1, 2019 [7 favorites]