I chose to pursue a dx last year despite knowing the risks because i thought I may be able to get on SSI disability. now that i come to applying, im so scared that it will be functionally self-registering with the govt. that said, i also can’t sustainably support myself without slipping into SI and making myself sick. i’m so torn! and also just so exhausted.
I'm sorry to hear that. I was not able to get on the SSDI either and it's been rough...but at least I understand myself better and feel more comfortable with myself since a diagnosis.
I got a dx in 2021 and I regret it now. I naively thought it would help me find and access the supports I needed. But those supports didn’t exist — I had to create them myself or change my life around so I didn’t need them. I hoped that a diagnosis that I could share with friends and family would help them be more understanding and compassionate when I did things “wrong,” but with a few exceptions it hasn’t. Now I’m terrified that having an official diagnosis has put a target on my back
Same, I was diagnosed in 2014 and now here I am, probably on some kind of list of impossible people who cannot be reasoned with to send off to a “wellness farm.”
I hope they at least put us on trains to get there. It’s the least they could do for the autistic community.
Thank you so much for this piece. It is a vital perspective you are bringing to the fore. Such a fraught history that cannot be forgotten. I am grateful for the hard truths of your parting statement: “Now that some of us can scurry back into the shadows of internalized stigma to spare our skins, what will we do for those who have no such choice?”
I really appreciate this article, but find it divisive and unnecessarily binaried. We as autistic people aren't just in two categories of those who can 'work' or mask and those who can't. Yes there are different levels and vastly different presentations and those who are the highest needs are, by far, disproportionately, going to be negativity affected. But despite this, it's no excuse to reduce the complexity of autism and any/all concurrent disability to a binary. Masking autistic people can't always maintain work, they can't just 'disappear' into the woodwork. And high needs people aren't always unable to work or 'produce', especially when we reframe what those words actually mean. My point is, this is very important and real issues, but to lay into this idea of there being two groups (those who can mask, those who can't) is reductionist and mirrors fascist arguments your trying to fight. You truly can't fight fire with fire. We are all in it together, and we all need to lift all of each other up.
I thought I was one of those masked, “lower needs” people until I collapsed and haven’t been able to function well enough since. Society seems to think people don’t need ongoing support to keep them above water and be able to thrive, just help them until they seem better. There’s an expectation to get back to what you were so they can help someone else. I do understand the practicality. I get the triage need, I really do, but if we offered support to people regardless of how functional they seem we’d help a lot more people. The labels should help us amplify the voices of those who need it most, not add stigma or separation.
I can seem “level 1” support needs and “level 2” within minutes or hours. I was diagnosed this month as level 2 during severe autistic burnout. I had to do my sessions over 5 months due to finance and other issues. It’s a gruelling process that makes you feel like an imposter for getting through it. I haven’t even paid for the report yet.
Accommodations help but there’s still disability. Even at my supposed most functional I am still disabled. There’s no privilege for maskers or anyone else.
Thanks for saying that. I think there are those who masked until their bodies just gave out and now they have to rebuild their lives from the ground up.
It is an interesting exercise in eugenics/hypocrisy to see RFK Jr. on the one hand going after the vaccines-cause-autism crap and autistic Elon Musk on the other impregnating as many women as he can with his DNA.
Well it is a privillege for some because in some areas you have to pay out of pocket and not everyone can afford it. In my country we have a lot of rural areas who have nowhere to go to get a diagnoses unless they have plenty of travel money. If they do it via telehealth then according to rule changes they wont be elligible for disability support services as it has to be in person completely or its not considered a valid elligible diagnosis. The “experts” are still heavily not understanding and believing that autism presents differently than the stereotype so some are told they arent Autistic but are *insert a mental illness like Bipolar, borderline personality disorder, anxiety, depression etc)
So I do think being able to get an assessment with someone who is well educated on autism face to face is a privilege out of reach for many here.
Exactly why they diagnosed bipolar and then told me I was too complex to conclusively diagnose autism, so by default it was ruled out or considered ‘inconclusive’ 😅 My o my 🙄professional health care has a long way to go here in the Netherlands 🤨
Yeah, I think the conversation about diagnostics is very heavily nuanced. And I think it’s imperative to remember that “privilege“ is a systemic advantage with real benefits/lack of obstacle that you are usually born with/into.
To be a child (1)born into a family that knows about autism/mental health disorders (2)has the means to afford medical intervention and (3) is paying enough attention to notice that their kid might need extra help IS (rare) and a privilege.
On the other hand, being an adult who has a diagnosis during a fascist nazi run administration that wants to use eugenic practices to essentially eradicate autistic people is a disadvantage. But that is not the fault of the diagnosis, that is the fault of the administration. That is not the fault of a parent who cares about their kid and is looking for avenues and means to help get their needs met.
Being able to get a diagnosis is a privilege. Feeling safe enough to get a diagnosis is a privilege. Having the financial means to get a diagnosis is a privilege. Having the community support to know that you are still gonna be loved and accepted within your family after you get a diagnosis is a privilege.
The diagnosis still has privileges associated with it, even if it is currently being used by Nazis to target, marginalized, oppress, and eradicate autistic people.
Then there are those like me who didnt chose to seek a diagnosis of autism, autism wasnt a word on my radar, I met it and got diagnosed with it after decades of severe mental health and psych stays and innapropriate treatments like ECT. Until one time after my 10th death attempt a lady psychiatrist saw it in me right away. Saved my life.
re the X marker - its definitely something to think about. i live in Canada and felt safe enough to get it. it was important to me to add to the official numbers and have some people know they just talked to a real non-binary person and it's no big deal lol. i will be getting a different marker on my passport tho for safety reasons. I would definitely prefer that our public facing documents didn't have gender/sex markers since they are useless and problematic - and like you say, it's none of the state's business.
Thank you! So much of the reaction I've heard has been "That's not true! Autistic people do pay taxes! Autistic people can work and take care of themselves!" And while that is true and needs to be said, I just feel like they are missing the point: There ARE plenty of autistic people who cannot keep a consistent job and need caregivers for life because of their autism. Those people deserve a life with as much autonomy as possible and as much support as needed too.
I think not enough people worry about the government having this kind of information as they do not know how, when and in what ways it could possibly be held against them. Even though there are many examples of extreme abuse of power by the government in the history of mankind like with Nazi Germany. Because they forget these minorities were targeted first and because they were small also on a much smaller scale. Together with all the other dissidents and people who could not or would not function in that type of society. They never had any choice or say in the matter. So yeah there’s really no imaginable reason the government should have this super personal information in the first place. If it’s for mental health care purposes sure. But you never know what else it can be used for in the future.. as history has taught us.
Hey Devon, I got a diagnosis at 34 years old. I didn’t seek out a diagnosis out of some new age desire to feel more enlightened or better understand myself. It was for my safety and survival. As it is for the majority of people. And I’m level 1, gifted, I run a business, own a house and make good money. But I had needs that were largely invisible and misunderstood until my evaluation that absolutely were generating safety issues I wasn’t even aware of. I find a lot of your personal essays to be incredibly presumptuous and actually kind of dangerous. A diagnosis gave me the tools I desperately needed to navigate this world in a way that is dignified and respectful. You are spreading fear mongering about a medical diagnosis that is unequivocally false and misinformed. This is a time now more than ever to support affirming care. Rather than colliding with narratives that a diagnosis is a scarlet letter. It is absolutely not. That is a lie. And I refuse to participate in this narrative. Get a diagnosis, it is liberating. It will give you life-saving tools and awareness around your own unique needs. Disclosure of a diagnosis is optional and does not interfere with your ability to get a visa, travel or get a job. The notion that a diagnosis is a brand of some kind is a total lie and a fear tactic. Don’t listen to this crap if you don’t want to, folks.
Get evaluated. It was one of the coolest experiences of my life. And the start of my life, in many ways.
First of all, love the article and the points being made regarding diagnosis. I’m wondering though on the point about the X marker: doesn’t the current situation with US passports kind of prove that changing markers on IDs *at all* is rather fraught? Clearly records of such changes are retained indefinitely by the government, even for those who chose F or M. I guess the argument could be that that’s only one risk point, while X is a risk every time the ID is shown to a person in authority... but that’s also true for those of us who do not (and may never) pass as the marker we have on our ID. Idk, I have the X marker myself and I’m debating changing it should the courts grant an injunction against Trump’s EO, but neither the marker associated with my AGAB nor its “opposite” will render me stealth at this point, to the government or anyone else. And maybe it’s just my pride or vanity talking now, but I don’t see why nonbinary and intersex people shouldn’t have the same legal legibility as anyone else just because it will never grant us the same camouflage “binary” trans people can sometimes aspire to. Insufficient though it is, a marker “proving” our status is sometimes the only tool we have for fighting being shunted into the wrong category, just as it is for other trans people.
I chose to pursue a dx last year despite knowing the risks because i thought I may be able to get on SSI disability. now that i come to applying, im so scared that it will be functionally self-registering with the govt. that said, i also can’t sustainably support myself without slipping into SI and making myself sick. i’m so torn! and also just so exhausted.
I'm sorry to hear that. I was not able to get on the SSDI either and it's been rough...but at least I understand myself better and feel more comfortable with myself since a diagnosis.
I got a dx in 2021 and I regret it now. I naively thought it would help me find and access the supports I needed. But those supports didn’t exist — I had to create them myself or change my life around so I didn’t need them. I hoped that a diagnosis that I could share with friends and family would help them be more understanding and compassionate when I did things “wrong,” but with a few exceptions it hasn’t. Now I’m terrified that having an official diagnosis has put a target on my back
Same, I was diagnosed in 2014 and now here I am, probably on some kind of list of impossible people who cannot be reasoned with to send off to a “wellness farm.”
I hope they at least put us on trains to get there. It’s the least they could do for the autistic community.
Thank you so much for this piece. It is a vital perspective you are bringing to the fore. Such a fraught history that cannot be forgotten. I am grateful for the hard truths of your parting statement: “Now that some of us can scurry back into the shadows of internalized stigma to spare our skins, what will we do for those who have no such choice?”
I really appreciate this article, but find it divisive and unnecessarily binaried. We as autistic people aren't just in two categories of those who can 'work' or mask and those who can't. Yes there are different levels and vastly different presentations and those who are the highest needs are, by far, disproportionately, going to be negativity affected. But despite this, it's no excuse to reduce the complexity of autism and any/all concurrent disability to a binary. Masking autistic people can't always maintain work, they can't just 'disappear' into the woodwork. And high needs people aren't always unable to work or 'produce', especially when we reframe what those words actually mean. My point is, this is very important and real issues, but to lay into this idea of there being two groups (those who can mask, those who can't) is reductionist and mirrors fascist arguments your trying to fight. You truly can't fight fire with fire. We are all in it together, and we all need to lift all of each other up.
I thought I was one of those masked, “lower needs” people until I collapsed and haven’t been able to function well enough since. Society seems to think people don’t need ongoing support to keep them above water and be able to thrive, just help them until they seem better. There’s an expectation to get back to what you were so they can help someone else. I do understand the practicality. I get the triage need, I really do, but if we offered support to people regardless of how functional they seem we’d help a lot more people. The labels should help us amplify the voices of those who need it most, not add stigma or separation.
I can seem “level 1” support needs and “level 2” within minutes or hours. I was diagnosed this month as level 2 during severe autistic burnout. I had to do my sessions over 5 months due to finance and other issues. It’s a gruelling process that makes you feel like an imposter for getting through it. I haven’t even paid for the report yet.
Accommodations help but there’s still disability. Even at my supposed most functional I am still disabled. There’s no privilege for maskers or anyone else.
Thanks for saying that. I think there are those who masked until their bodies just gave out and now they have to rebuild their lives from the ground up.
I still miss Steve Silberman, author of Neurotribes. We lost him last August. He remains a beacon.
It is an interesting exercise in eugenics/hypocrisy to see RFK Jr. on the one hand going after the vaccines-cause-autism crap and autistic Elon Musk on the other impregnating as many women as he can with his DNA.
Well it is a privillege for some because in some areas you have to pay out of pocket and not everyone can afford it. In my country we have a lot of rural areas who have nowhere to go to get a diagnoses unless they have plenty of travel money. If they do it via telehealth then according to rule changes they wont be elligible for disability support services as it has to be in person completely or its not considered a valid elligible diagnosis. The “experts” are still heavily not understanding and believing that autism presents differently than the stereotype so some are told they arent Autistic but are *insert a mental illness like Bipolar, borderline personality disorder, anxiety, depression etc)
So I do think being able to get an assessment with someone who is well educated on autism face to face is a privilege out of reach for many here.
Try being bipolar ánd autistic 🤪😳🙄
Yes! People can be both! But takes a rare doctor to accept this and diagnosis both.
Exactly why they diagnosed bipolar and then told me I was too complex to conclusively diagnose autism, so by default it was ruled out or considered ‘inconclusive’ 😅 My o my 🙄professional health care has a long way to go here in the Netherlands 🤨
Yeah, I think the conversation about diagnostics is very heavily nuanced. And I think it’s imperative to remember that “privilege“ is a systemic advantage with real benefits/lack of obstacle that you are usually born with/into.
To be a child (1)born into a family that knows about autism/mental health disorders (2)has the means to afford medical intervention and (3) is paying enough attention to notice that their kid might need extra help IS (rare) and a privilege.
On the other hand, being an adult who has a diagnosis during a fascist nazi run administration that wants to use eugenic practices to essentially eradicate autistic people is a disadvantage. But that is not the fault of the diagnosis, that is the fault of the administration. That is not the fault of a parent who cares about their kid and is looking for avenues and means to help get their needs met.
Being able to get a diagnosis is a privilege. Feeling safe enough to get a diagnosis is a privilege. Having the financial means to get a diagnosis is a privilege. Having the community support to know that you are still gonna be loved and accepted within your family after you get a diagnosis is a privilege.
The diagnosis still has privileges associated with it, even if it is currently being used by Nazis to target, marginalized, oppress, and eradicate autistic people.
Then there are those like me who didnt chose to seek a diagnosis of autism, autism wasnt a word on my radar, I met it and got diagnosed with it after decades of severe mental health and psych stays and innapropriate treatments like ECT. Until one time after my 10th death attempt a lady psychiatrist saw it in me right away. Saved my life.
re the X marker - its definitely something to think about. i live in Canada and felt safe enough to get it. it was important to me to add to the official numbers and have some people know they just talked to a real non-binary person and it's no big deal lol. i will be getting a different marker on my passport tho for safety reasons. I would definitely prefer that our public facing documents didn't have gender/sex markers since they are useless and problematic - and like you say, it's none of the state's business.
Thank you! So much of the reaction I've heard has been "That's not true! Autistic people do pay taxes! Autistic people can work and take care of themselves!" And while that is true and needs to be said, I just feel like they are missing the point: There ARE plenty of autistic people who cannot keep a consistent job and need caregivers for life because of their autism. Those people deserve a life with as much autonomy as possible and as much support as needed too.
Omg Hana Asperger did not create this to spare aspies. He was part and parcel got he Nazi machine.
Did you do your research?
He sorted the girls and humanities gifted aspies out and sent them to be killed in the gas chambers and gave the the math science boys to the machine.
I think not enough people worry about the government having this kind of information as they do not know how, when and in what ways it could possibly be held against them. Even though there are many examples of extreme abuse of power by the government in the history of mankind like with Nazi Germany. Because they forget these minorities were targeted first and because they were small also on a much smaller scale. Together with all the other dissidents and people who could not or would not function in that type of society. They never had any choice or say in the matter. So yeah there’s really no imaginable reason the government should have this super personal information in the first place. If it’s for mental health care purposes sure. But you never know what else it can be used for in the future.. as history has taught us.
Hey Devon, I got a diagnosis at 34 years old. I didn’t seek out a diagnosis out of some new age desire to feel more enlightened or better understand myself. It was for my safety and survival. As it is for the majority of people. And I’m level 1, gifted, I run a business, own a house and make good money. But I had needs that were largely invisible and misunderstood until my evaluation that absolutely were generating safety issues I wasn’t even aware of. I find a lot of your personal essays to be incredibly presumptuous and actually kind of dangerous. A diagnosis gave me the tools I desperately needed to navigate this world in a way that is dignified and respectful. You are spreading fear mongering about a medical diagnosis that is unequivocally false and misinformed. This is a time now more than ever to support affirming care. Rather than colliding with narratives that a diagnosis is a scarlet letter. It is absolutely not. That is a lie. And I refuse to participate in this narrative. Get a diagnosis, it is liberating. It will give you life-saving tools and awareness around your own unique needs. Disclosure of a diagnosis is optional and does not interfere with your ability to get a visa, travel or get a job. The notion that a diagnosis is a brand of some kind is a total lie and a fear tactic. Don’t listen to this crap if you don’t want to, folks.
Get evaluated. It was one of the coolest experiences of my life. And the start of my life, in many ways.
Peace
First of all, love the article and the points being made regarding diagnosis. I’m wondering though on the point about the X marker: doesn’t the current situation with US passports kind of prove that changing markers on IDs *at all* is rather fraught? Clearly records of such changes are retained indefinitely by the government, even for those who chose F or M. I guess the argument could be that that’s only one risk point, while X is a risk every time the ID is shown to a person in authority... but that’s also true for those of us who do not (and may never) pass as the marker we have on our ID. Idk, I have the X marker myself and I’m debating changing it should the courts grant an injunction against Trump’s EO, but neither the marker associated with my AGAB nor its “opposite” will render me stealth at this point, to the government or anyone else. And maybe it’s just my pride or vanity talking now, but I don’t see why nonbinary and intersex people shouldn’t have the same legal legibility as anyone else just because it will never grant us the same camouflage “binary” trans people can sometimes aspire to. Insufficient though it is, a marker “proving” our status is sometimes the only tool we have for fighting being shunted into the wrong category, just as it is for other trans people.
I am so glad you wrote this up. This part of your work has been heavy on my mind recently.