#imagine telling your therapist you think you might be autistic only for her to deny it because “everyones a bit autistic”

[tiredapocalypse]

hiiii! soooo, we're calling to let you know that we got your diagnosis wrong. yh, turns out you don't actually have the amulet's curse??? yh, sorry, it's actually autism. our bad :/

[autismus-obscurus]

On self-dx

A while ago, someone asked me privately to tell them why I was clearly pro self-dx. It's a question I have seen a lot. It's a complex topic and there's a lot of misconceptions about what self-dx even is. Here's a slightly adapted version of my answer (under a cut so I don’t clog your dash). If anyone else has something to add, please do.

Also, TW: swearing. Sorry not sorry, It's just how I talk.

First off, we have to define what self-dx even is. Self dx is NOT googling "autism symptoms", reading one list, and the deciding "oh I'm autistic, lets go beg for pity". I can't speak for all autistics, but I don't fucking want pity. That's not the point of saying you're autistic. I just want to live without constant overload, okay? Lets go a bit more into detail: I’m very clearly pro self-dx, but I will not take someone seriously who takes one test and reads one blog post and then decides “I’m autistic.” That’s not how this works. Self-dx means hours upon hours of reading blogs, of reading articles, of checking the criteria again and again (cynically said, you're checking off a list, we'll get to that again later on), of asking autistics about every tiny trait you suspect could point towards or against it, of self doubt, of hope, of finding autistics spreading positivity or Autism Speaks / Autism Moms(TM) telling you you’re a monster. It’s emotionally draining as fuck. Self-dx is a search for identity. It’s trying to find out why your life is the way it is, why you are a certain way and how to cope with problems in a way that doesn’t do any more damage.

This line of thought goes in hand with another tumblr thing: Many people shit on self-dx because there's this nearly immortal assumption that people self-dx because it’s “cool” to be mentally ill. It’s not. Admittedly, teenagers are fucking weird and maybe some genuinely think they are ill when they are not, but I'm convinced that is the minority at best. Also, when we get to the point of preteneding to be sick that’s a legitimate disorder in itself. (Münchhausen or imposter’s syndrome. I've heard it called pathological lying, but that's quite a bit different and also a disorder that people cannot control and need help for.)

Let's look at a few statistics. In Europe 30% of people are officially diagnosed with a disorder under the ICD-10 / DSM-V. 75% of mental disorders start in adolescence (according to a German survey, BGS 98; here's also a link to the offical WHO page with statistics: HERE). The survey does not include those who are too ashamed to get help, who have no access to help, who are just not taken serious or have to fear abuse if it becomes known. Autism is not a mental disorder, obviously, but the staggering majority of autistics in the past was diagnosed as a child and face many of the same problems. (I’ll get to why the diagnosis age is a problem for autistic people in general in a second.) Now imagine finding a community of people who understand you, who can give you actually helpful tips, and you don’t have to reveal your identity. Anything classified as abnormal is still a taboo. People don’t believe you or make jokes about you. Example: I had to fight for an autism diagnosis because my dad, and I quote, says “there is nothing wrong with you”. No, there’s not, but I’m still autistic. That’s the mindset people apply to any neurodivergence. As to the matter of why so many people on the internet claim to be neurodivergent / mentally ill, I have a theory of my own. I can’t prove it, but it makes sense for me. Many neurodivergencies make it hard to go out. I’m introverted as hell, and often don't have the spoons to go out. So what do I do? I spend my life at home, browsing the internet. It takes me so much less effort to keep contact with people than if I had to go out and meet them. No sensory overload, nothing unexpected will happen. Meanwhile, the healthy people and extroverts are out and about having fun their own way. And, coming back to the community, on here it’s a lot easier to express your thoughts, especially on taboo topics.

Example: I think reading this text we can agree that my English (my second language) is reasonably good and that I’m a logical, intelligent person that can express arguments in an ordered manner. Right? Well, if you would be talking to me face to face, I would probably not make a whole lot of sense. I stutter, I lose trains of thoughts, I fall over my vocabulary, my pronunciation is often wobbly and then I will inevitably panic and make even less sense (this goes for talking in my L1 as well, in case anyone wonders). I’m not dumb, but face to face communication is hard.

Next up, the issue with psychologists and getting diagnosed. There is this pervasive notion that pschologists are The Authority (TM) who know everything and nobody else can be as good as them. Here's the thing: Psychologists are human. They’re not omniscient. And sometimes those psychologists are just shit. They can be sexist, and racist, and narcissistic. They can be condescending, and unable to admit they doN't know enough about a topic, and flat out ignore new evidence because it doesn’t fit their worldview. Go in the actuallyautistic tag. The amount of people who are dismissed by their therapists because this so called professional “has a feeling” they’re not autistic is ridiculous. Feelings don’t matter. Only the diagnostic interview matters, but the patients are denied that because a psychologist trusts his gut more than science. Without a decent self-dx it will be pretty hard to get diagnosed as a teenager or adult. On top of that, once you have learned to pass, autistic traits get lost or suppressed for fear of punishment. Often you have to convince them to test you with a detailed list that describes how you fit the DSM criteria. Which is by definition already a self-dx. "Oh, but psychologist are trained for that, surely they know!!!!!11!" I’m a psychology student. I just got an A in my clinical psychology class. I'll write my thesis in clinical psychology probably. The amount of diagnoses you have to learn does not allow to go in depth of anything. What a psychologist does is listen to you and check boxes on a list. (Sound familiar? I said we'd get there again.) We didn't even talk about autism. I did a presentation on it, found out my course teacher doesn't even know ABA is harmful (his point was "well the literature says it's effective"; Are You Kidding?). Our paedagogy prof spewed some ableist phrases pitying her friend that has an autistic kid. The perks of being an undercover autistic person :))) (That's sarcasm.)

To get back to the point: An ableist at worst, at best uneducated psychologist decides if you’re autistic, solely on what they have been told. The amount of posts that goes "I was denied diagnosis because I have good grades / are a girl / have friends / can talk" is ridiculous.

Example: I was in therapy three times until I was fifteen and NONE of them got the idea I might be autistic, despite me showing pretty severe symptoms. I had to self-dx and then convince my therapist to test me. I only even got that idea because we watched Rain Man in school. Seriously? Who knows you better: You or a psychologist you know for an hour?

Okay, before I get carried off, all of that assumes you actually get as far as being tested. To get there, it requires parents to listen to their kid. Parents typically don’t want anything to be wrong with their kid. (There’s nothing wrong with being autistic, but too many people still think that.)

Example: My dad still doesn’t believe I’m autistic. My diagnosis was four years ago. Because, I quote, “There’s nothing wrong with you.” No there’s not, but that doesn’t make me allistic.

The amount of stereotypes and ableist myths is staggering. Autism is one of the most misunderstood conditions I’ve ever researched. The DSM criteria are shit. They are, since decades, based on boys. They’re very limited, and while not wrong, describe things in a way that makes it hard for people to find "atypical" examples (stereotypical interests = trains). What about girls obsessed with horses? Nobody thinks that’s abnormal, yet it’s very possible. There are still a ton of people who think girls cannot be autistic, or if they are, to use the ableist principles this idea is founded on, they have to be “low-functioning”. The truth is, even the diagnostic interviews can’t pick up on autistic girls very well, that is a known fact. (Look at this link for example: HERE) I have most of those posts tagged either as info or ableism, but I don't have the spoons to check right now and my internet is shit.) To paraphrase the article and the other sources I know: Most autistic females just fly under the radar because they’re better at adapting and hiding it. That doesn’t have to be a conscious effort, but it’s exhausting, and then you sit there as a teenager and wonder why you’re feeling like shit because you never learned healthy autistic coping machanisms (or got punished for them).

Example: I didn’t learn of stimming, of dyspraxia, of sensory processing issue and literally everything that had defined my daily life until I found the autsitic community. I don’t think my therapist ever heard of that and I was labeled too “high-functioning” to actually get help. I managed, and back then I was fine, or thought I was after the depression wore off. I’m paying the price for that now.

People of color and women are severely mis- and underdiagnosed in literally everything medical. Teenagers are very rarely taken seriously, especially girls. Some people don’t believe autism exists at all. Now, assume somebody has understanding parents or teachers or is an adult, and could, thoretically go to a doctor to get diagnosed. Because (paraphrasing the original ask here) by validating self-dx we only push the notiion that you don't need a doctor to be diagnosed (which is again the Autority Lane (TM)). Well, yes, it would be preferable to get an official diagnosis, for the accomodations alone, but there is a shitton of reasons not to.

Example: I am currently undiagnosed. How so? My therapist made a deal with my parents that we would not write down the diagnosis, to prevent it from bringing me trouble. At first I was like “that’s ableist bullshit”. It’s not. Well, it still involves a lot of ableism, but there are a lot of reasons why I have to weigh if getting a diagnosis is worth it, even though I clearly need the help right now.

Here is a list of good reasons why someone could choose not to get professionally diagnosed:

money (in Germany healthcare is mostly free, but in the US getting a diagnosis can cost several thousand dollar)

autistic people are at a much higher risk of abuse, and don’t get taken as seriously (see ABA therapy and Autism Moms)

With an autism diagnosis you can be instituationalized far easier against your will (that works with almost all mental diagnoses)

In Germany you will have a harder time getting an insurance, they will make you pay more and don’t provide certain services e.g. You want an insurance for when you become unable to work, you know, like almost everyone has? Yeah, forget about it, autistic people don’t get that.

It can be used against you when you get in a fight about your kids’ custody

Medical ableism is a thing. You can have everything from a cold to cancer, from depression to borderline, it’s all The Autism. Autistic people are often seen as not having enough insight into their own body and mind to judge their own body (just like women, so as an autistic woman you're fucked twice as much :))) )

Getting a job outside of “supportive” businesses (read: they want Rain Man. They’re IT businesses who want autistic programmers and engineers, everyone else is pretty much fucked.) will be almost impossible. Autism is a disability and nobody wants disabled people past what the necessary quota is.

In the psych field there are no officially diagnosed people I know of, one researcher’s work was discredited when it came out she was autistic. I was already warned several times that I should hide my autism if I wanted to get a job at all.

basically, people are shit and can and will use your diagnosis against you

Lastly, I don’t really understand why people are so hateful towards the self-dx crowd. I can’t prove that there’s no black sheep, but most of them are people who look to improve their lives and better their mental health. Let’s put it like this:

The anti-self dx crowd: Only psychologists can tell if you’re autistic. Self-dx: I think I’m autistic. Antis: How dare you! I can clearly tell you’re not autistic. Fuck off, faker.

Call me cynic, but that is the core of reason most anti-self-dxers apply. Who the hell gave them the authority to judge other people? How do you know what a person is going through from reading two posts on tumblr? This isn’t some elite club. That kind of thinking ostracizes us even more when we alread have to fight so hard to be allwoed to live. Who are the self-dxers hurting? The ableists treat us like shit anyway. And honestly? I’d rather let in five fakers than have an autistic person suffer alone because of they can’t “prove” they’re autistic.

Dev out.

[stimtoybox]

I know you've already answered something similar, but I sometimes think that I might be on the spectrum. I've become more aware of my stimming/need to stim. But I feel like I'm faking it. That I only think that I see the symptoms because I want to be in with the in crowd (my friends, most of them are) or whatever. And I feel like I would've been diagnosed earlier. Idk I'm just really afraid of bringing this up with my therapist.

It’s okay to be afraid of bringing this up, anon. Bringing anything up with a therapist or psychologist is scary, and this is a big thing to bring up. Especially if you have any reason to feel as though you’ll be ignored or dismissed, and given the ableist ideas many professionals have about autism and how it presents, there is a chance of having to endure the pain of this. It’s a very real, very valid thing to fear, and I think we’ve all felt it at some point.

It’s also okay to feel like you’re faking it. But, honestly, I can’t imagine anyone wanting to be autistic that doesn’t have a connection or similarity of experience that draws us to the label. Being openly autistic means opening yourself up to an awful lot of ableism. It’s hard, scary and sometimes incredibly dangerous. I’ll be honest and say that this word is one of the better things that has ever happened to me, in that it has given me a label, a connection, a community, a way to conceptualise all that is strange in me - and it has opened the door for me to conceptualise other identities (being aro and grey-ace, things I consider connected to autism in me, like my lack of gender). Being able to go back and look at my characters through the lens of I am autistic and accidentally writing characters who are also autistic was a delight I find hard to put into words. But … it is dangerous to be autistic. It means not being understood by so many medical professionals; it means being dismissed. It means having your stims questioned on the street by strangers. For me, it meant having to quit a job because “not being able to control my facial expressions because I’m autistic” wasn’t good enough when a customer got angry at me. It means people having a label to put to your difference and that label used against you.

What I mean is this: on the off chance anyone is actually faking autism to be popular or part of a crowd, they’re opening themselves up to an awful lot of awfulness. That’s an incredibly high price to pay for connection. (I know we autistics are awesome people, but I don’t think many allistics are willing to endure the social consequences of being autistic in return for that awesomeness.) The reality is that most of us are trying to fake allism (consciously or unconsciously) to be popular or part of a crowd, not the reverse.

If you think you might be autistic, please explore it. Please. Follow autistic blogs, track the #actuallyautistic tag here on Tumblr, ask questions of autistic people. The worst that can happen is that you find out you’re not autistic, but you come away having learnt more about us. That harms nobody.

I can tell you, from the very depths of my heart, that time and age has nothing to do with the validity of your diagnosis. Nothing. It has everything to do with the fact that parents, doctors and teachers are awful at recognising autism, especially if you aren’t a cis white boy. Even then, if your autism presents a little atypically, you can still fall through the cracks. It’s only relatively recently that SPD symptoms were even included as part of an autism diagnosis, meaning people with communication skills good enough to muddle through (people like me) were overlooked entirely. It didn’t matter that I had few friendships growing up; it didn’t matter that I lacked a lot in interpersonal skills; it didn’t matter that I had no small talk skills, or any meaningful conversation skills, unless it happened to be a special interest of mine. I could rattle off a script for buying items (after many years of trying to figure this out) and I didn’t stim too much (largely because it had been abused out of me) so I was just shy and quiet, and my parents never mentioned the screaming matches we had about their stealing my pillow (to replace it with a “better” one) to our family doctor.

Anon, I was diagnosed last year. I’m thirty. (I’m a bit older than most people here. I don’t usually give my age out online other than “adult” because, as a writer, so much of my personal details are already readily accessible. But I think, today, this is something you need to know.) True, I’d been told at seventeen by an autistic friend that she and her mother thought me autistic. True, I’d been told at twenty-eight that my psychologist, parent of an autistic son, thought me very similar to him. True, I’d been told at twenty-nine that an autistic friend thought a character I wrote was based on her … when it was actually an exploration of my own SPD symptoms. True, I’d self-dx’d as having SPD for a couple of years. So when I underwent a BPD assessment only to have them tell me that they suspected I was autistic and assessed me for that … well, the evidence was there, but as I’ve said before, I was still shocked. And then I was angry, so angry.

The evidence was there, and two strangers saw it after a couple of one-hour sessions, but so many people who’d known me all my life (the people with the power to improve it) didn’t see it or refused to say the word. How could they have not have seen it? How did they all make me go so long before a professional finally said the word? How was it that I had to spend so many years feeling different, feeling alienated from all the things people don’t struggle with, until finally someone professional told me I’m autistic?

(Of course, now I know more about professionals, I don’t consider their words very important. Reading autistic people’s posts here on Tumblr affirmed my autism. Seeing how similar their challenges and feelings and experiences are to mine affirmed my autism. We are not identical - very autistic is different - but we have enough in common that autism is right for all of us.)

Yet, when I came online, I discovered that this is normal. So normal. That there are women and NB people who are being diagnosed in their thirties, forties, fifties and older. That so many people are only now getting the word that makes sense of their lives. That ableism, racism and misogyny all combine together to routinely deny many people a diagnosis that gives us understanding, identity and community.

As a late-diagnosed autistic, I swear to you that there’s many reasons why you might not have been diagnosed earlier, and none of them invalidate your autism.

My advice is the same as in this post, if you decide you want to bring this up with your therapist. But please know that you can take your time. Do it at a pace that is comfortable for you, if you want to. And if you don’t want to, don’t! If you choose to self-diagnose, the vast majority of the autistic community considers it good enough (as we should) because we know how many of us are missed by professionals. We know the professionals are awful at recognising autism and we’re not going to let their biased viewpoint keep our own from connecting with us and sharing the resources we have.

It’s natural to feel the way you’re feeling, anon, but I don’t believe you’re faking or doing this to be popular. I believe you’re discovering similarities in your own experience, those similarities drawing you to connect with other autistics. ND folk (even unknowing ND folk) tend to folk together - other ND folk make better sense to us, after all!

It’s hard for me to message with people because of my chronic hand pain, so I tend to be quite erratic in this (and if it’s been a high ask day I might not get to them at all that day, so expect that, too) but if you need to talk to me about this, the message box on my personal blog is always open, okay?

Best of luck, anon.

- Mod K.A.