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Title: "What Does Masking Look Like?"

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Just to be clear, you either are autistic or you are not and for the most part it doesn’t matter. Within the autistic community you are absolutely welcome to call yourself autistic.

This applies whether you are entirely self diagnosed, or have a PhD wielding mother who thinks you are autistic but “not autistic enough” to call yourself autistic.

If you have reason to believe you are autistic, and you seek support in the autistic community that is good enough. You are not intentionally trying to deceive people by seeking answers. If you end up being wrong about the autism, so what? What matters is you get support that you need, and if we can provide that, that is good enough.

It is absolutely ok to come back later and say, “This ended up being wrong, but it helped me, thank you.”

Most of us would rather help you and be wrong than refuse help that you need. Even if that help is just, “we’re here, we see you, we have empathy for your situation.”

“That’s right…. my son’s paediatrician says that my autistic way of parenting supports my son too well for him to be traumatised enough for a diagnosis, so we should let school traumatise him and come back later…

…Which brings me to thinking about how we identify autism in the children who are now being raised by autistic parents in a respectful and supportive way. The children who have experienced acceptance of their autistic neurology from birth and who have never been exposed to harmful therapies.

Autistic children raised by accepting parents, often autistic themselves.”

It’s true. The current clinical model for Autism is based on traumatized Autistic children. The experiences of happy, well-nurtured, thriving Autistic people have been hugely excluded from the clinical literature. That needs to change.

on the converse i got undiagnosed by a misogynistic psychologist because the specific ways i was traumatized (especially as a girl) led to me constantly masking to the point where he said i outwardly didn’t seem autistic enough for him to think i counted as autistic, despite my brother there to put in word for how i used to be and despite me saying the amount of constant effort i put in to masking my autistic traits in everyday life leads me to periodic breakdowns, to which he took no concern and dismissed it as me being irrational and exaggerating my struggle, despite only meeting me 4 hours earlier.

the fact that both of these experiences are common goes to show that the mental health field under capitalism neither cares about ameliorating people’s suffering nor genuinely creating a world inclusive of neurodiversity

for me and for many in the community, the label “autistic” is a convenient shorthand for certain patterns/commonalities in the way we/our brains function, and can give us space to communicate with others like us about what that means for our experiences in our current society

for them, it is a way to pathologize certain outwardly exhibiting traits that are seen as a burden or a drag on resources or that are seen as refusal to neatly integrate into structures capitalism uses to perpetuate itself. so whatever people’s needs are, they’ll be happy to switch between denying agency and denying need for help/resources whenever is most convenient

It’s because neurodivergence means nothing to neurotypical society, outside of how it affects them.

I’ve asked this question before:

What do you call an autistic that meets every single criteria except the whole, “it interferes with their life,” thing because they manage to cope well enough to get by?

In someone who is already diagnosed, we call them autistic. In someone who hasn’t been diagnosed, we call them subclinical.

But if we recognize that learning the skills for coping after diagnosis still means a person is a life long autistic, how come we don’t recognize this same thing in autistics who figure it out before they are diagnosed autistic?

This is literally the reason it is so very hard to get a diagnosis as an adult. A lot of the times we do have enough coping skills to get by, even if we don’t understand what those coping skills are being used for.

The entire premise of autism as it is understood by the broader medical community is that if you are autistic, it is impossible for you to learn to cope with the world and that’s how you know you are autistic, then turning around and saying, “Here’s how you cope with autism,” after you are diagnosed.

This is 1.) why anyone who says clinical diagnosis is required or the only real diagnosis needs to just eff right off and 2.) why a strictly medical model is a shit idea, and 3.) why we absolutely neeeeeeeeed to listen to late diagnosed adults about their experiences and 4,) fix gaps in clinical diagnosis for people who want or need it.

At the end of the day, the answer to, “What do you call an autistic who can cope,” needs to be, “autistic,” full stop.

What gets me about the anti self-DX crowd is the consistent argument that the professionals spend years learning about this stuff, which is why they know more.

Except… they don’t.

Do you really think that every doctor spends years learning about every single disease, disorder, or whatever? They would literally never graduate. Ask any psych student how much time they spent actually learning about something like autism. Like, the actual number of concrete hours they spent studying autism.

I promise you by the time I am done with my psych degree, I will have spent way, way, more time on understanding autism on my own then I ever did in class, and that’s if I take a class specifically for developmental disorder. And way, way, way, more time understanding my autism in particular than I ever did learning about it in school.

Developmental psychology, by the way, is an elective at my school. I don’t actually have to take the class about autism to get a degree. I don’t actually have to take the class about autism to get the degree that lets me get a clinical license. I don’t actually have to take the class about autism to legally diagnose autism.

What I do have to do is take the core requirements, which include general psych classes that might give me two full days of note taking in a lecture. Maybe double that if you include developmental disorders in general. Maybe double that again if you include all the therapies commonly used on autistics - ABA, occupational therapy, speech therapy, etc.

So maybe 32-48 hours total time? On all things autistic? Because that is going to give me such a good over view of a complex neurology. Yep, yep.

I’m pretty sure I spent that much time in the first week of my self-acceptance learning about autism.

Never mind that you don’t actually have to be taught by a professor in order to learn something. There is such a thing as directed self-study and self-study. Which, by the way, is actually a required part of my degree. Just saying.

My psychiatrist before he resigned literally told me that he thought he knew everything he needed to know about autism, and then I came along and taught him more than he could have ever learned in medical school.

A similar thing also happens in education where people think teachers (especially special education teachers) have so much training in disabilities (particularly autism). Your general education teachers, depending on their state, may be required to take one class on disabilities (New York only requires 1 class and it has some of the strictest teacher certification requirements in the US). And that is the most basic crash course type class because not only do we have to cover the developmental disabilities (including autism, ADHD, and the learning disabilities), but also mental illnesses, and your most common physical disabilities as well as info on deaf and blind students, if you’re lucky. I got exempt from this class because my advisor didn’t see the point of me taking it when I am disabled myself and my on campus job was tutoring fellow disabled students in French and Arabic. Plus I got experience during practicum and student teaching. The most people typically learn in this class is that people first language is the only thing that should ever be used along with other things I like to call “fluff language”. Often I find the abled bodied/neurotypical teacher candidates say that the class was “enlightening”. These are the people with little to no previous exposure to actual disabled people.

Things literally aren’t much better for those getting certified in students with disabilities/special education. In New York, those getting the students with disabilities cert have to take a state mandated workshop on autism. Given I have already sat through 3 state mandated workshops, I can’t imagine the autism one would be more than 1-2 hours long. So the idea that professionals in either mental health or education know better than autistics about autism is absurd.

echoing this 100%

i have 3, count them THREE master’s degrees in education, two of which focused entirely on disability, and all from super legit programs.  95% of what i know about Autism came from research i did on my own, fostered by you lovely bloggers, leading up to and centering around my self diagnosis. i have the privilege of knowing for a fact that my research methods are super legit because i’m both a trained professional in disability related stuff and a hardcore and published scholar IN AUTISM AND DISABILITY …..but you absolutely don’t need my kind of credentials to feel valid in your self-diagnosis. i’m telling you straight up i would honor anyone’s self-diagnosis in spite of my over-education….because i know first hand you all are just as capable, because you are your own experts in yourselves. I have that institutional “proof” that my self-diagnosis is golden, but because of my experience i can also vouch for the fact that that institutional “proof” is in no way necessary for a good self diagnosis. it’s just symbolic capital (see Bourdieu)

 so if anyone is being shitty to you about it, think of me if it helps, and that i would have your back. in fact send them to me! i will give them a serious talk. 

sometimes I think about how the autistic experience is literally defined by trauma and get so angry it’s hard to speak

I’ve been thinking about this again and you know what? I’m still fucking angry. 

There are autistic kids out there who cannot get diagnosed because they aren’t traumatised enough to fit the criteria. that means that most - if not all - people who are diagnosed with autism have had their natural autistic traits filtered through an incredible amount of trauma, and these are the people the diagnostic criteria was built off of. but we also know that autistic people are more likely to have trauma from things that don’t traumatise NT children, partly because we have an entirely different sensory experience of the world, and partly because of the way our brains are wired. 

when we talk about diagnoses of autism, we are also talking about trauma, and the pain autistic children go through living in a world not built for their needs - in some cases a world structured in ways completely antithetical to their needs. we can’t talk about one thing without talking about the other, and that’s bad. 

it’s bad because it teaches NTs that trauma is just a normal part of the autistic experience - it’s not. it’s a result of the systemic ableism that touches us all, destroying our lives if we’re unlucky. it’s not okay. none of this is okay.

and it’s another reason why advocating paper diagnosis as a requirement for allowing someone to say they’re autistic is extremely harmful.

“you don’t have enough scars for me to acknowledge that you’re hurt by lack of accommodation” contributes to the prevalence of people who argue that being insufficiently scarred while self identifying as autistic contributes to misinformation about autism.

no. the misinformation about autism is that the trauma from long-term lack of accommodation is a necessary part of autism. but acknowledging that would involve questioning the idea of medical authority, and would involve acknowledging that ableism is a system that trains everyone (including doctors) to devalue disabled experiences, rather than a problem of individual people being assholes.

i support the radical idea that the ICD and DSM—medical authorities—don't determine what communities i belong to

so we decided having a comprehensive, in-depth explanation of why we’re pro-self diagnosis & why you should be too would be good, so we have something to refer back to when needed.

tl;dr: self-diagnosis is a result of the professional diagnostic system being broken & ableist, & society being ableist in general. the problem isn’t self-diagnosis; the problem is the ableism & other bigotry making self-diagnosis necessary.

so, in order to get professionally diagnosed as autistic, several things have to happen:

Keep reading

it’s wild that there are people who still think that non-autistic people who might not even have taken a single class about autism (and if they did, it was about autism from a non-autistic, behaviorizing perspective) can recognize autism more accurately than actual autistic communities

it’s wild that they still think this even after a bunch of researchers literally confirmed that autistic people are, in fact, experts on autism because of lived experience of autism

I hate that this is the way it is, but if you’re questioning “is this an ‘everyone does this’ thing or is it an autism thing?” this rule is pretty much ironclad:

If you got bullied for it, it is NOT an “everyone does this” thing. “Everyone does this” things are, by definition, things that people don’t get bullied for.

HELLO AUTISM COMMUNITY!

I’m sorry, but I’ve gotta rant. The other day I was in New York, and I saw this billboard:

Look a little closer:

Yep, you’re seeing this right. Autism Speaks. On a billboard with Julia. Sesame Street has joined forces with our “pals” (and by pals I mean enemies that we wouldn’t touch with a ten foot pole) over at Autism Speaks. Julia, a character who has been embraced and loved by the autism community, is now the face of Autism Speaks, an organization that has hurt our community more than it has helped. I am heartbroken. This character has made me, as an autistic person, so happy and gave me hope that autism is starting to become more accepted by society. And although I don’t speak for everyone in the autism community, I know that there are many people who felt the same way. But now that this character is the face of an ableist movement which pushes the idea that autism is a disease in need of a cure, that hope is gone. PLEASE reblog this to get the word out, whether you’re on the autism spectrum or not.

You can contact them. I googled 'email sesame street' and about three results down was something like contact sesame street autism. Let them know that their treatment of autistic voices is not on.

yeah! I’m doing this right now. email them. looking this up, one of the first options is this

what they’re doing is not OK. autistic people deserve better. boost our voices. 

Self diagnosis

You cannot self diagnose yourself with autism. You cannot diagnose yourself with ANYTHING unless you are a certified doctor.

Why is it that a majority of tumblr all of a sudden wants to have autism 2019??

A fake autistic (it’s so weird to say cuz there just shouldn’t BE fake autistics) telling someone that they’re “privileged” is honestly mind boggling.

Like why? Why would you want autism?? It isn’t pretty, it doesn’t make you quirky or cool or a special little snowflake. It just makes you mentally disabled. Which is also not cool. It’s just so not fun. Like not fun at all. I wish it were as fun as people are hyping it up to be 😂.

The only person who ever hyped up autism for me was my mom. She would always tell me “Einstein had autism and he wasn’t dumb”, or “autism does not equal retarded”. (Her words not mine).

Hell if you have autism, you usually don’t even know or notice unless a doctor tells you. I was pissed when my doctor told me that shit. I was young as fuck when I was first diagnosed but hearing it again and again as a teen isn’t the most joy inducing thing. I’ve never in my life seen autism as a cool thing. I’ve always seen it as a thing I should keep quiet about or else I’ll be bullied or just an unwanted weight on my shoulders. A shitty label that I can’t just rip off.

Next time a self diagnosed autistic tells me to check my privilege I’ll tell them to check up with their doctor because they obviously have something and it’s not autism 🙄

( not trying to be rude because you may actually have a mental illness that’s not autism. Always see a doctor if you’re medically questioning something )

“you usually don’t even know or notice unless a doctor tells you.” WRONG. I knew I wasn’t like my peers, but didn’t know why because the information about autism available today wasn’t around in the 80s and 90s. I was dx'ed at 15 in ‘95, but you can betcha I would have self diagnosed and gone to my mom about seeing a pro at age 10 if today’s info was out in 1990. I was lucky to get a pro dx when I did. I might have been dxed sooner if doctors didn’t assume autism was only a boy thing. I spent my childhood in doctors offices being misdiagnosed with a bunch of incorrect crap by people who saw me for maybe 30 minutes total, picked out ONE trait to base their diagnosis off of and didn’t live in my head. The clinical psychologist who diagnosed me looked at all my records, my tests, put all the traits together and diagnosed me. The process of self diagnosis is not look at a website for 2 seconds and assume autism. It’s as intensive as being tested with lots of time spent reading, cross-checking and self examination. So please, OP, recognize that privilege does play a role in accessing professionals for a diagnosis. Stuff like travel, the home situation(ie abusive, unsupportive household), income, insurance, gender (especially if trans or nb), race, age, and the knowledge of the professional about autism play huge roles. Pros trapped in the old stereotypes of autism are going to fuck it up. They aren’t perfect and they don’t live in the head of the person they’re diagnosing. Neither do you. I personally see selfdx as a stopgap to a prodx later, even if it means years of waiting before someone can finally get to a professional. My hope is everyone will someday receive helpful, compassionate, accessible care, but that’s a long way off yet. Somebody with a selfdx won’t have access to what prodx'ed people have access to. Community is all they have, so to shut them out and say they don’t count is taking away their only support. Besides, even if they find out later they got it wrong, they learn to be better allies than gatekeepers. Please don’t gatekeep. Life is hard enough for people in bad situations, they don’t need their struggles invalidated online too.

Might have these out of order but just a good thread to share.

[link to the original thread on twitter for screenreaders]

on one hand this thread makes me want to cry a lot and on the other I’m like, well, my brain is a complex system and now I have a sort of entry point to figure out how it works, so that’s good

Pretending to be Normal by Liane Holliday Willey is a memoir of a woman figuring out she’s autistic after her child was diagnosed with autism.

Though she doesn’t use the phrase “self diagnosis,” it’s essentially a memoir about her self diagnosis process. It has a forward by autism researcher Tony Attwood, who was supportive of Willey’s self diagnosis. There’s a note where Willey expresses that she’s not interested in professional diagnosis at the time of writing.

This book was published in the 90s. Acceptance of autistic self diagnosis in our community isn’t new or exclusive to tumblr. And lo and behold, it hasn’t harmed anyone!

If a person learns about autism and thinks “that sounds a lot like me and would explain a lot of my experiences and struggles” that is not hurting anyone. Not even if they decide not to pursue a professional diagnosis. If you’re pretty sure you’re autistic, you’re not hurting anyone by saying “I’m autistic.”

What gets me about the anti self-DX crowd is the consistent argument that the professionals spend years learning about this stuff, which is why they know more.

Except… they don’t.

Do you really think that every doctor spends years learning about every single disease, disorder, or whatever? They would literally never graduate. Ask any psych student how much time they spent actually learning about something like autism. Like, the actual number of concrete hours they spent studying autism.

I promise you by the time I am done with my psych degree, I will have spent way, way, more time on understanding autism on my own then I ever did in class, and that’s if I take a class specifically for developmental disorder. And way, way, way, more time understanding my autism in particular than I ever did learning about it in school.

Developmental psychology, by the way, is an elective at my school. I don’t actually have to take the class about autism to get a degree. I don’t actually have to take the class about autism to get the degree that lets me get a clinical license. I don’t actually have to take the class about autism to legally diagnose autism.

What I do have to do is take the core requirements, which include general psych classes that might give me two full days of note taking in a lecture. Maybe double that if you include developmental disorders in general. Maybe double that again if you include all the therapies commonly used on autistics - ABA, occupational therapy, speech therapy, etc.

So maybe 32-48 hours total time? On all things autistic? Because that is going to give me such a good over view of a complex neurology. Yep, yep.

I’m pretty sure I spent that much time in the first week of my self-acceptance learning about autism.

Never mind that you don’t actually have to be taught by a professor in order to learn something. There is such a thing as directed self-study and self-study. Which, by the way, is actually a required part of my degree. Just saying.

My psychiatrist before he resigned literally told me that he thought he knew everything he needed to know about autism, and then I came along and taught him more than he could have ever learned in medical school.

A similar thing also happens in education where people think teachers (especially special education teachers) have so much training in disabilities (particularly autism). Your general education teachers, depending on their state, may be required to take one class on disabilities (New York only requires 1 class and it has some of the strictest teacher certification requirements in the US). And that is the most basic crash course type class because not only do we have to cover the developmental disabilities (including autism, ADHD, and the learning disabilities), but also mental illnesses, and your most common physical disabilities as well as info on deaf and blind students, if you’re lucky. I got exempt from this class because my advisor didn’t see the point of me taking it when I am disabled myself and my on campus job was tutoring fellow disabled students in French and Arabic. Plus I got experience during practicum and student teaching. The most people typically learn in this class is that people first language is the only thing that should ever be used along with other things I like to call “fluff language”. Often I find the abled bodied/neurotypical teacher candidates say that the class was “enlightening”. These are the people with little to no previous exposure to actual disabled people.

Things literally aren’t much better for those getting certified in students with disabilities/special education. In New York, those getting the students with disabilities cert have to take a state mandated workshop on autism. Given I have already sat through 3 state mandated workshops, I can’t imagine the autism one would be more than 1-2 hours long. So the idea that professionals in either mental health or education know better than autistics about autism is absurd.

echoing this 100%

i have 3, count them THREE master’s degrees in education, two of which focused entirely on disability, and all from super legit programs.  95% of what i know about Autism came from research i did on my own, fostered by you lovely bloggers, leading up to and centering around my self diagnosis. i have the privilege of knowing for a fact that my research methods are super legit because i’m both a trained professional in disability related stuff and a hardcore and published scholar IN AUTISM AND DISABILITY …..but you absolutely don’t need my kind of credentials to feel valid in your self-diagnosis. i’m telling you straight up i would honor anyone’s self-diagnosis in spite of my over-education….because i know first hand you all are just as capable, because you are your own experts in yourselves. I have that institutional “proof” that my self-diagnosis is golden, but because of my experience i can also vouch for the fact that that institutional “proof” is in no way necessary for a good self diagnosis. it’s just symbolic capital (see Bourdieu)

 so if anyone is being shitty to you about it, think of me if it helps, and that i would have your back. in fact send them to me! i will give them a serious talk. 

Another post about why I support self-dx folks

Let’s say we have 2 people, Bobby and Betty.

Bobby does not have autism. Bobby is 13 and Bobby thinks he has autism. Bobby identifies with a lot of the posts in the actuallyautistic tag and it makes him feel good to be part of it. He took a few tests online and some of them said he’s autistic, although not all. Bobby will hang out until he grows up and realizes he wasn’t autistic after all, and it was all just circumstance, but at least he found a community that made him feel better when he was unsure.

Betty does have autism. She’s 22 now, still noticing symptoms in her everyday life. But she was never officially diagnosed and struggled enormously with the lack of accommodations and lack of knowledge of how to deal with her symptoms. She has read the DSM-5 and a whole heap of information available to her online and after weeks of research and note-taking on her behavioral patterns, she has come to the conclusion that she is autistic.

I’d support both these people, because you never know which one is a Bobby and which one is a Betty.

Maybe they’re faking it for attention, but who cares? If some kid is faking it for attention, I guarantee they’ll grow out of it. But if you act like a jerk to every self-dx person you come across, you’re being a jerk to a whole lot of people who actually are autistic. 

Personally, I’ll always give self-dx people the benefit of the doubt, because they could be autistic, and that’s enough for me.

Hey everyone, I am a 25 year old autistic guy with ptsd and fibromyalgia. I am currently living with my ex, we recently split up. I am most likely moving to a housing facility through my therapists office in about a month and am applying for a grant for that as well as rental assistance for next month at my current place. My ex is also mentally ill and her last job treated her poorly so she started a new job, but will only get one small check this month. I will.not make enough to cover rent, so I am begging you to help in any way you can. If I get approved for rental assistance I will gladly refund you if you leave contact information. I am not looking to make extra money or anything, just enough to live and be able to afford medication. Anything helps. Thank you.