Autistic Problems

Source ~ Unknown

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Title: "What Does Masking Look Like?"

Suppressing stims

Hiding your emotions

Acting like your peers even when it's uncomfortable or doesn't make sense

Putting on fake facial expressions

Not asking for help

Pretending to enjoy something you dislike (or vice versa)

Withholding meltdowns (extremely dangerous)

Finding yourself lying more than usual (covering up bluntness)

Forcing hurtful eye contact

Apologising excessively for poor memory or any other autisic trait you have that is impossible to mask

Having to forcefully stop yourself from oversharing on a special interest

Attributing certain unmaskable traits to "being a perfectionist" or "just anxious"

Having to pretend to not be overstimulated (leading to burnout)

I’ve debated how to answer this since it came in. I’ve written and deleted two long responses and four short ones.

In the end, all I can say is that I don’t have any practical advice because I do not have any experience with this situation beyond limited education and hearing bits and pieces of other experiences that are similar.

What I can say:

The only person who gets to determine the “positive” aspects of a disability is the person with the disability. It is dismissive for a parent to suggest that you are not “disabled enough” when clearly you have difficulties. Autism is a disability, it is disabling, and if it is not then it is by definition not Autism*. It is unreasonable and unethical to deny a diagnosis to a person because they are “only a little disabled.” They are still disabled.

Your mother is denying you a diagnosis because you aren’t disabled enough, using reasoning that is questionable at best, and the fact that you felt the need to mention she has a PhD suggests that she uses the authority of her degree and/or license to make that point. “I’m a psychologist, I know the truth.”

Furthermore, there is a very specific reason that medical practitioners of any kind should not be making final determinations for loved ones with regards to disability. A person will always have a very hard time being truly objective about family, particularly those they raised or took care of. For a perfect example of why this is, see the above two paragraphs.

The reason I have no advice is because experience tells me that you are probably up the proverbial creek without a paddle (especially if you are a minor!). Experience tells me that a medical person with a PhD that has Opinions about family can only be swayed by one argument: a diagnosis by a colleague that specializes in that diagnosis.

Obviously, you have a much better idea of whether or not this is the type of person your mother is. Maybe pointing out all of this to her will make her say, “You know what, you’re right, I’m not an autism expert. I think you’re wrong, but that isn’t for me to decide.” Maybe she will say, “I’m your mother, I know best, I don’t want to hear your excuses.” Experience tells me it is much more likely to be the latter if you are a minor, and still likely if you are an adult.

In the end, I can’t tell you what to do. I don’t even have practical suggestions. But maybe, hopefully, knowing the sort of problems involved well help you find the people who have been through this sort of thing and will have practical solutions. Whatever those solutions are, they will be very different depending on whether you are a minor, dependent adult, or independent adult.

In the meantime, please seek support and understanding from the autistic community. Even if your mother is “right” in that your issues are not autism related (maybe your executive dysfunction comes from depression or ADHD, I don’t know!), if our support helps you while you figure it all out then you are absolutely welcome here.

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.”

“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.

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

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.

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.

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.

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.

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)

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. 

“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.

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:

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:

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 🙄

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!

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.

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.

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.

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)

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.