I wonder what a liberatory process would look like that also helps autistic kids and adults who might not be able to self-realize. For those that might not have the introspective or other skills that might be necessary to know they are autistic and what care and accommodations they need. My mind's going to a community care based model where it's autistics helping other possible autistics get connected to resources. Curious to know what you think, Devon!
That's exactly the kind of model I'd like to see. In writing this, I anticipated that one of the main concerns a lot of otherwise-sympathetic readers might have is wondering what would become of high-supports-needs Autistics kids who currently are diagnosed young and put through the pathological paradigm. My true belief is that aside from providing the child and their family with a framework and a language to better understand themselves, very little that's positive comes out of that process -- the 'treatment' and 'resources' most kids receive are rooted in ABA and are harmful and stigmatizing. So, to answer your actual question in a roundabout way, I think we do need a model of community care wherein Autistic people are the experts and are the cornerstones of our community and provide knowledge, resources, and acceptance to Autistic kids and their families instead of having kids put on the pathology pipeline the moment they show any visible/stereotypical 'symptoms'. And this approach would be a lot less categorical by necessity - a lot of kids who may or may not be Autistic but have a ton in common with us would benefit from being included.
I think another analogy that is helpful is to the Deaf community. Just like Autistic kids, many Deaf kids are born to hearing families, who view deafness as a pathology that needs to be cured to the extent possible, and not as a language minority with a distinct culture. Deaf kids need Deaf adults, whether those adults are their biological families or not, and I think this is similar to the sort of relationship Autisitc kids can/should have to Autistic adults.
I have been thinking along these same lines for a while—including the analogy with the Trans experience. (I’m a philosopher and I’m finding Trans Philosophy an invaluable resource for thinking through what an Autistic Philosophy might be.) Thanks for articulating this position so clearly.
It’s a trap—there’s already a mark on students with disabilities, and as a disabled teacher myself, it’s a real struggle to balance educating them, their caretakers, and, most importantly, other educators. SO SO SO many still treat disability, especially neurodivergence, as something infantalizing, or something only kids get. They’ll swear up and down they “get it,” but I’ve seen the way so-called progressive educators treated me when I discussed my ADHD. Before AND after I was “officially” diagnosed. (Part of what makes me unenthusiastic about the prospect of an autism assessment: I’m always complaining that the majority of mental health assessments are “essentially a glorified Cosmo quiz.”)
There was always this unspoken suspicion/assumption that I was faking it, that I was simply too immature to properly handle being an adult, that I connected things to disability too much, and that I myself was over-recognizing/diagnosing kids, I suppose as a form of alleged projection. And not only was it hard to educate them without being seen as difficult or disobedient, not only did many folks in charge not seem to WANT to better understand, but, at the same time, I too don’t want to diagnose these kids. I just want to provide them with accommodations and protections that help them, and unfortunately, the only way to do that in many cases is to have that. ESPECIALLY ESPECIALLY when students enter adolescence, when so many are suddenly expected to just stop needing accommodations, or are considered immature for needing them. Too much disability rhetoric/advice in education is focused on younger children, and worsened by the fact that primary and secondary educators have distinct degrees and training.
But, for instance, when I installed what I call a fidget library (a basket with fidget toys, and some other random satisfying but un distracting things to fidget with, like play-soy) in my hs English classroom, my students LOVED it. No one had to ask me or have a diagnosis or whatever to accommodate their own needs, and learn how to self-regulate. And most students would gladly return the items, from social pressure and wanting those items to be there the next day. And almost every student would use it, disabled or not.
Sometimes, the only other way to escape this is money and privilege. As you point out in your article, when you were a professor, no one questioned you when you needed a standing desk. I know it’s a common point of discussion or critique that disability activists say that money can, in many ways, “erase” a disability, especially per the social model of disability. Perhaps it doesn’t erase their difference, but it erases many of the struggles that come from others not accommodating that difference.
Also, a bit random, but I wonder if you’ve seen this video by Alexander Avila. It’s a great analysis of the issues of self-diagnosis (and cites you a few times, incidentally), and the cultural history of “madness” as a construct. https://youtu.be/x4ieMzbXiRA?si=VXA72TrC6khvCAt0
Outstanding essay. This Tuesday will see the first anniversary of the day when I ended up in tears, pleading with the psychologist who was assessing me, and who (after four hours of intense conversation) was um-ing and ah-ing about whether I was just on *this* side of the line or on *that* side of the line, and whether diagnosing me as autistic might reduce my chances of getting the ADHD diagnosis I was waiting for in a separate process.
In the end, she did decide I was on the autistic side of the line – I got past the troll and over the bridge – but it was a traumatic experience.
And this was having paid for a private assessment (with a psychologist recommended to me as being affirming of autistic identities), mostly because I didn't want to have to wait literally *years* for an NHS assessment, only to be told that, because I have a spouse and children and a steady job, I couldn't be autistic. A few months later, the friend whose autistic self-realisation had first set me on the path of my own finally got to the end of the years-long NHS queue and was told by the psychiatrist that she just had anxiety and wasn't autistic – exactly the outcome I'd feared for myself.
Sitting here in the UK, though, it's poignant to read your comments about self-identification becoming the norm for trans people in the US. Here on Terf Island, the gatekeepers still reign supreme – if you can even *reach* the gates, with the waiting lists for an initial assessment now approaching half a century, and with no prospect of any improvements from a government utterly hostile to the identities and lives and human rights of trans people. (And if you're under 18, the trolls at the gate have decreed you can only be "confused", not trans; are quietly withdrawing – not banning, just making impossible to obtain – all hormonal treatments, including puberty blockers, on supposed "clinical effectiveness" grounds; and have even taken the Orwellian step of declaring that it is gender *affirming* care that is the true "conversion therapy" that needs to be banned.)
Just now seeing your comment, thank your for sharing all of this Jae. What's happening in the UK with the gatekeeping of both Autistic and trans identities shows us so starkly what the outcome is when we allow our identities and our fates as marginalized people to be defined by administrative gatekeepers within powerful hierarchies. The only way out is beyond. Together.
Oh, and how could I forget the latest gift from the British state: a judge recognising that non-recognition of nonbinary genders is discriminatory and breaches the human rights of nonbinary people, but declaring that the "administrative convenience" of the state (all those computers to be reprogrammed to add another letter to those M's and F's!) is more important than addressing this
This makes perfect sense, considering only those of us who live with a neurodivergent brain can know exactly what it’s like, whether we care or feel for others (which we often do more-so than what’s normal), and how the external world affects us on a daily basis. The neurotypical can’t possibly understand or describe it as accurately or even correctly.
So I agree with the sentiment and theory behind all of this... and yet I don't see that it is practical to wait for society to catch up. Only because of luck and extreme privilege was I able to access the testing to get to medical recognition of my own self-recognition as Autistic and still... It took the medical Autism dx from for me to get the EDS referral I'd been asking for for almost a decade; it took the official dx for the Buspar scrip that has calmed my auditory sensitivities tenfold. And etcetera for other common co-occuring medical conditions. And, embarrassingly,(and this is hard for me to admit) it took the official dx for me to believe my own self, and to begin accommodating MY OWN SELF by doing things as simple as saying no to situations like large gatherings, etc.
I wonder what you think of the Mad Pride/Mad Studies movement, which questions the existence of psychiatric diagnoses and treatments in their current form, and points out the harm done by rigid categorisation/stereotyping.
Since small kids can’t self-identify, do you think all expecting parents should get an autism education session with their Lamaze or hospital intake before giving birth or before leaving the hospital, so they know what to look for in younger children and also to understand the condition better in general?
Or maybe in combination with some other state mandated medical step parents go through?
I deeply wish I’d known more about autism sooner as a parent.
I think the changes needed are a bit more grassroots than that -- I would say I wish that every parent had an education in trans issues and queer issues before they had a child too, so that they would know how to support their kid without judging them, and could find connections to the queer community right away for the sake of both their kind and themselves. I don't think that's something I would trust a hospital or any other powerful institution with so well as I'd trust the community and the growing cultural change that we're fighting for ourselves. I think as Autistic liberation continues to score major victories, some of what we need to see will naturally happen -- parents will know more Autistic people, in general, and people will know that Autism is just a thing that happens in the human population to be expected and accommodated for in advance. That's the long term goal anyway. In the meantime, I do think doulas, childcare professionals, etc should have a firmer education in neurodiversity specifically, and that they should pass along those ideals to the parents they support. And I say neurodiversity rather than Autism because I think parents need to be introduced to the idea that these forms of human diversity are fine, rather than being taught a list of Autism symptoms to look out for, if that makes sense.
I wish they would also make it mandatory for school teachers, because from what I can see in the public school system, many teachers don’t know what the word neurodivergent even means... though then again we reach the problem of having to rely on a state system, which isn’t the best.
Neurodiversity education needs to be more widely included in DEI programs/trainings. We are seeing growth here as the community advocacy becomes more visible and robust.
I totally agree, but am also worried. While I'd love to see it happen, I am fearful of the psychiatric establishment response. Maybe it's because I don't live in the US, but over here it's an extremely hierarchical system where only the people with right credentials get to sign off on an diagnosis (ie psychiatrists with a medical degree). From all my experience with this group (ranging from merely bad to disastrous) I really doubt they'd be willing to give up even an iota of power that their authority over all things mental related gives them. Not least because trans people (myself included) have been pushing for the abolition of the deeply invasive and fucked up assessment process and replace it with informed consent for years now. Without avail, because the credentialed experts say no (they don't want to lose their power and the (research) money that brings them), and that's who gets listened to. Like, the comparison is imperfect, because with autism you really don't need the Official Seal of approval, but for trans stuff there's various legal things you do need it, but still. We'll keep on pushing, and I'll keep reiterating to everyone who's wondering about themselves whether they might be autistic that *they* are the ultimate arbiter of that (or trans for that matter), but it's going to be a looooooooong fight.
"Like, the comparison is imperfect, because with autism you really don't need the Official Seal of approval, but for trans stuff there's various legal things you do need it, but still." here in the US, psychiatric/professional approval isn't needed for basically anything other than your HRT prescription. In my state, for example, people can change their gender markers on their ID's without any official paperwork from a doctor, and can do so on their birth certificate as well. And certainly nothing is needed for a name change or anything like that. I wish so desperately that you and every other trans person living elsewhere in the world was afforded this kind of freedom! The informed consent process does so much to help keep us safe and to liberate us, and it's what every trans person deserves. I don't have much helpful to say here other than to affirm that alternative models are possible, and are really successful and helpful, and that I wish I knew better which kinds of political organizing steps would be most effective for pushing for that paradigm outside of the US... in some ways I do think the US consumer model of healthcare, while horrific in most other respects, has allowed us to exert pressure on our doctors in the direction of trans liberation a bit more easily...
Thanks. Yeah, I'm very aware that alternative models are possible, that's why we've been pushing for that. Used to be that sterilization was mandatory if you wanted to change your legal gender marker, but thanks to ceaseless efforts from trans people that got dropped a few years ago. You now only need an "expert" to declare that you're super duper sure of yourself. Which again, we've been pushing to get rid off too. Almost got the legislation through last year, until some politicians got cold feet, the religious right got loud, and the far right decided to import US culture war bullshit verbatim. One election later and the situation... did not improve. We'll just keep on keeping on.
I shared this article with my family as a primer when I announced my diagnosis - that thing where I paid a professional thousands of dollars to check my work.
So many great points in this piece, I don't know where to begin with my comment. So I'll just say that I subscribed SO HARD after reading this. 😂 Looking forward to reading more from you!
No, actually, we don't appreciate your ableist bullshit. It's been disproven that vaccines cause autism, detoxes are horseshit, and autistic people are better than dead ones due to preventable diseases. Now, unkindly, fuck off.
I wonder what a liberatory process would look like that also helps autistic kids and adults who might not be able to self-realize. For those that might not have the introspective or other skills that might be necessary to know they are autistic and what care and accommodations they need. My mind's going to a community care based model where it's autistics helping other possible autistics get connected to resources. Curious to know what you think, Devon!
That's exactly the kind of model I'd like to see. In writing this, I anticipated that one of the main concerns a lot of otherwise-sympathetic readers might have is wondering what would become of high-supports-needs Autistics kids who currently are diagnosed young and put through the pathological paradigm. My true belief is that aside from providing the child and their family with a framework and a language to better understand themselves, very little that's positive comes out of that process -- the 'treatment' and 'resources' most kids receive are rooted in ABA and are harmful and stigmatizing. So, to answer your actual question in a roundabout way, I think we do need a model of community care wherein Autistic people are the experts and are the cornerstones of our community and provide knowledge, resources, and acceptance to Autistic kids and their families instead of having kids put on the pathology pipeline the moment they show any visible/stereotypical 'symptoms'. And this approach would be a lot less categorical by necessity - a lot of kids who may or may not be Autistic but have a ton in common with us would benefit from being included.
I think another analogy that is helpful is to the Deaf community. Just like Autistic kids, many Deaf kids are born to hearing families, who view deafness as a pathology that needs to be cured to the extent possible, and not as a language minority with a distinct culture. Deaf kids need Deaf adults, whether those adults are their biological families or not, and I think this is similar to the sort of relationship Autisitc kids can/should have to Autistic adults.
Yes!! Thank you so much for adding this Marta. So much of the Autistic liberation movement owes a debt to the Deaf community's work.
I have been thinking along these same lines for a while—including the analogy with the Trans experience. (I’m a philosopher and I’m finding Trans Philosophy an invaluable resource for thinking through what an Autistic Philosophy might be.) Thanks for articulating this position so clearly.
It’s a trap—there’s already a mark on students with disabilities, and as a disabled teacher myself, it’s a real struggle to balance educating them, their caretakers, and, most importantly, other educators. SO SO SO many still treat disability, especially neurodivergence, as something infantalizing, or something only kids get. They’ll swear up and down they “get it,” but I’ve seen the way so-called progressive educators treated me when I discussed my ADHD. Before AND after I was “officially” diagnosed. (Part of what makes me unenthusiastic about the prospect of an autism assessment: I’m always complaining that the majority of mental health assessments are “essentially a glorified Cosmo quiz.”)
There was always this unspoken suspicion/assumption that I was faking it, that I was simply too immature to properly handle being an adult, that I connected things to disability too much, and that I myself was over-recognizing/diagnosing kids, I suppose as a form of alleged projection. And not only was it hard to educate them without being seen as difficult or disobedient, not only did many folks in charge not seem to WANT to better understand, but, at the same time, I too don’t want to diagnose these kids. I just want to provide them with accommodations and protections that help them, and unfortunately, the only way to do that in many cases is to have that. ESPECIALLY ESPECIALLY when students enter adolescence, when so many are suddenly expected to just stop needing accommodations, or are considered immature for needing them. Too much disability rhetoric/advice in education is focused on younger children, and worsened by the fact that primary and secondary educators have distinct degrees and training.
But, for instance, when I installed what I call a fidget library (a basket with fidget toys, and some other random satisfying but un distracting things to fidget with, like play-soy) in my hs English classroom, my students LOVED it. No one had to ask me or have a diagnosis or whatever to accommodate their own needs, and learn how to self-regulate. And most students would gladly return the items, from social pressure and wanting those items to be there the next day. And almost every student would use it, disabled or not.
Sometimes, the only other way to escape this is money and privilege. As you point out in your article, when you were a professor, no one questioned you when you needed a standing desk. I know it’s a common point of discussion or critique that disability activists say that money can, in many ways, “erase” a disability, especially per the social model of disability. Perhaps it doesn’t erase their difference, but it erases many of the struggles that come from others not accommodating that difference.
Also, a bit random, but I wonder if you’ve seen this video by Alexander Avila. It’s a great analysis of the issues of self-diagnosis (and cites you a few times, incidentally), and the cultural history of “madness” as a construct. https://youtu.be/x4ieMzbXiRA?si=VXA72TrC6khvCAt0
Thank you for all your work, including this piece. Your book and your voice are supporting a major transition for me and I am forever grateful.
Outstanding essay. This Tuesday will see the first anniversary of the day when I ended up in tears, pleading with the psychologist who was assessing me, and who (after four hours of intense conversation) was um-ing and ah-ing about whether I was just on *this* side of the line or on *that* side of the line, and whether diagnosing me as autistic might reduce my chances of getting the ADHD diagnosis I was waiting for in a separate process.
In the end, she did decide I was on the autistic side of the line – I got past the troll and over the bridge – but it was a traumatic experience.
And this was having paid for a private assessment (with a psychologist recommended to me as being affirming of autistic identities), mostly because I didn't want to have to wait literally *years* for an NHS assessment, only to be told that, because I have a spouse and children and a steady job, I couldn't be autistic. A few months later, the friend whose autistic self-realisation had first set me on the path of my own finally got to the end of the years-long NHS queue and was told by the psychiatrist that she just had anxiety and wasn't autistic – exactly the outcome I'd feared for myself.
Sitting here in the UK, though, it's poignant to read your comments about self-identification becoming the norm for trans people in the US. Here on Terf Island, the gatekeepers still reign supreme – if you can even *reach* the gates, with the waiting lists for an initial assessment now approaching half a century, and with no prospect of any improvements from a government utterly hostile to the identities and lives and human rights of trans people. (And if you're under 18, the trolls at the gate have decreed you can only be "confused", not trans; are quietly withdrawing – not banning, just making impossible to obtain – all hormonal treatments, including puberty blockers, on supposed "clinical effectiveness" grounds; and have even taken the Orwellian step of declaring that it is gender *affirming* care that is the true "conversion therapy" that needs to be banned.)
Just now seeing your comment, thank your for sharing all of this Jae. What's happening in the UK with the gatekeeping of both Autistic and trans identities shows us so starkly what the outcome is when we allow our identities and our fates as marginalized people to be defined by administrative gatekeepers within powerful hierarchies. The only way out is beyond. Together.
Oh, and how could I forget the latest gift from the British state: a judge recognising that non-recognition of nonbinary genders is discriminatory and breaches the human rights of nonbinary people, but declaring that the "administrative convenience" of the state (all those computers to be reprogrammed to add another letter to those M's and F's!) is more important than addressing this
This makes perfect sense, considering only those of us who live with a neurodivergent brain can know exactly what it’s like, whether we care or feel for others (which we often do more-so than what’s normal), and how the external world affects us on a daily basis. The neurotypical can’t possibly understand or describe it as accurately or even correctly.
🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥
Thank you, Devon!!!
So I agree with the sentiment and theory behind all of this... and yet I don't see that it is practical to wait for society to catch up. Only because of luck and extreme privilege was I able to access the testing to get to medical recognition of my own self-recognition as Autistic and still... It took the medical Autism dx from for me to get the EDS referral I'd been asking for for almost a decade; it took the official dx for the Buspar scrip that has calmed my auditory sensitivities tenfold. And etcetera for other common co-occuring medical conditions. And, embarrassingly,(and this is hard for me to admit) it took the official dx for me to believe my own self, and to begin accommodating MY OWN SELF by doing things as simple as saying no to situations like large gatherings, etc.
I wonder what you think of the Mad Pride/Mad Studies movement, which questions the existence of psychiatric diagnoses and treatments in their current form, and points out the harm done by rigid categorisation/stereotyping.
#madpride forever
Great piece.
Since small kids can’t self-identify, do you think all expecting parents should get an autism education session with their Lamaze or hospital intake before giving birth or before leaving the hospital, so they know what to look for in younger children and also to understand the condition better in general?
Or maybe in combination with some other state mandated medical step parents go through?
I deeply wish I’d known more about autism sooner as a parent.
I think the changes needed are a bit more grassroots than that -- I would say I wish that every parent had an education in trans issues and queer issues before they had a child too, so that they would know how to support their kid without judging them, and could find connections to the queer community right away for the sake of both their kind and themselves. I don't think that's something I would trust a hospital or any other powerful institution with so well as I'd trust the community and the growing cultural change that we're fighting for ourselves. I think as Autistic liberation continues to score major victories, some of what we need to see will naturally happen -- parents will know more Autistic people, in general, and people will know that Autism is just a thing that happens in the human population to be expected and accommodated for in advance. That's the long term goal anyway. In the meantime, I do think doulas, childcare professionals, etc should have a firmer education in neurodiversity specifically, and that they should pass along those ideals to the parents they support. And I say neurodiversity rather than Autism because I think parents need to be introduced to the idea that these forms of human diversity are fine, rather than being taught a list of Autism symptoms to look out for, if that makes sense.
That does make sense. Thank you!
I wish they would also make it mandatory for school teachers, because from what I can see in the public school system, many teachers don’t know what the word neurodivergent even means... though then again we reach the problem of having to rely on a state system, which isn’t the best.
Neurodiversity education needs to be more widely included in DEI programs/trainings. We are seeing growth here as the community advocacy becomes more visible and robust.
I totally agree, but am also worried. While I'd love to see it happen, I am fearful of the psychiatric establishment response. Maybe it's because I don't live in the US, but over here it's an extremely hierarchical system where only the people with right credentials get to sign off on an diagnosis (ie psychiatrists with a medical degree). From all my experience with this group (ranging from merely bad to disastrous) I really doubt they'd be willing to give up even an iota of power that their authority over all things mental related gives them. Not least because trans people (myself included) have been pushing for the abolition of the deeply invasive and fucked up assessment process and replace it with informed consent for years now. Without avail, because the credentialed experts say no (they don't want to lose their power and the (research) money that brings them), and that's who gets listened to. Like, the comparison is imperfect, because with autism you really don't need the Official Seal of approval, but for trans stuff there's various legal things you do need it, but still. We'll keep on pushing, and I'll keep reiterating to everyone who's wondering about themselves whether they might be autistic that *they* are the ultimate arbiter of that (or trans for that matter), but it's going to be a looooooooong fight.
Thanks for your comment.
"Like, the comparison is imperfect, because with autism you really don't need the Official Seal of approval, but for trans stuff there's various legal things you do need it, but still." here in the US, psychiatric/professional approval isn't needed for basically anything other than your HRT prescription. In my state, for example, people can change their gender markers on their ID's without any official paperwork from a doctor, and can do so on their birth certificate as well. And certainly nothing is needed for a name change or anything like that. I wish so desperately that you and every other trans person living elsewhere in the world was afforded this kind of freedom! The informed consent process does so much to help keep us safe and to liberate us, and it's what every trans person deserves. I don't have much helpful to say here other than to affirm that alternative models are possible, and are really successful and helpful, and that I wish I knew better which kinds of political organizing steps would be most effective for pushing for that paradigm outside of the US... in some ways I do think the US consumer model of healthcare, while horrific in most other respects, has allowed us to exert pressure on our doctors in the direction of trans liberation a bit more easily...
Thanks. Yeah, I'm very aware that alternative models are possible, that's why we've been pushing for that. Used to be that sterilization was mandatory if you wanted to change your legal gender marker, but thanks to ceaseless efforts from trans people that got dropped a few years ago. You now only need an "expert" to declare that you're super duper sure of yourself. Which again, we've been pushing to get rid off too. Almost got the legislation through last year, until some politicians got cold feet, the religious right got loud, and the far right decided to import US culture war bullshit verbatim. One election later and the situation... did not improve. We'll just keep on keeping on.
I shared this article with my family as a primer when I announced my diagnosis - that thing where I paid a professional thousands of dollars to check my work.
So many great points in this piece, I don't know where to begin with my comment. So I'll just say that I subscribed SO HARD after reading this. 😂 Looking forward to reading more from you!
You might appreciate this:
https://soberchristiangentlemanpodcast.substack.com/p/s2-ep-5-autism-vaccine-injury-my
No, actually, we don't appreciate your ableist bullshit. It's been disproven that vaccines cause autism, detoxes are horseshit, and autistic people are better than dead ones due to preventable diseases. Now, unkindly, fuck off.
Thank you so much for this !! 🔥🔥💕💕