#i want to make it 100% clear i support and accept self-dx

[narcissisticpdcultureis]

what is armchair diagnosis?? isn’t that kinda like self-diagnosis? do you support self diagnosis?

heyo! i completely support self-dx, i've been self-dx with multiple things myself (either currently or before i got confirmation, only really my depression and bpd were things brought up by a therapist first). armchair diagnosing is more like when someone who actually knows very little accurate info about a disorder and/or a person and tries to "diagnose" said person with said disorder. we bring this up specifically for npd because it's very common for people to armchair diagnose people who are abusive, self-centered, toxic, ect with npd simply because they view npd as "bad person disorder."

[my-darling-boy]

Genuinely asking, isn't self-diagnose with a condition kind of dangerous? Because legitimizing self-diagnosing opens a door to many malicious people who would want to exploit the fact they can self-diagnose? And in turn, make the space of autistic people worse?

Was going to skip this, but I’m writing a LONG response because I’m VERY exhausted with the amount of misinformation I see on this “self dx is dangerous” take, so buckle up and allow me to info dump.

Recently, authentic_autism_advocacy, an Instagram account run by a supposed medically diagnosed autistic woman was discovered to be a non-autistic woman, Connie Manning, posing as a medically diagnosed autistic person to spread hate and anti-self diagnosing speech. In reality, she is a neurotypical mother who regularly uses her autistic son for clout; she also turned out to have a hand behind CalmWear, a brand of sensory compression products designed for disabled people. Not only had she been spewing hatred towards other autistic people, she had been accusing well known AFAB autistic tiktokers like beckspectrum of faking being autistic and threatening self diagnosed autistics and saying they are a danger to the community, and engaging in other incredibly discriminating behaviour. Yes, she herself was a neurotypical person posing as a medically diagnosed autistic to perpetuate hateful rhetoric about self diagnosed people and used her voice to speak OVER autistic folk for financial gain and exploitation of autistic people, including her own son. If you want to read this roller coaster of a story, an autistic person wrote an entire article on it with tons of screenshots and sources.

So let me make one thing clear to you.

The purpose of actually, genuinely self diagnosing is not done to attract attention or to parade around and exploit other autistic people. Self diagnosed autistic individuals have recognised due to difficult life circumstances, financial hardship, bigotry and stigma within the medical/legal world, being a minor, lack of insurance, lack of proper access to safe care facilities, being denied assessment due to incompetent or biased practitioners, and/or any other obstacle that they may temporarily or permanently be barred from diagnosis. Self diagnosis does NOT instantly mean a person is posing for clout, nor does it indicate a person is trying to wring money from assistance services or exploit other autistics. And nts who use self diagnose with intentions of harming the community? That’s NOT self diagnosis, that’s abuse of something meant to aid people blocked from medical care or financial means to that care. All we can do for autistic people, no matter who we perceive them to be, is treat them the same way we would any other autistic person. Because the moment you start deciding by your own book who deserves respect and who doesn’t, you’ll be on a slippery slope to locking out thousands of autistic people from the community. If it’s discovered a person like Connie is literally abusing the system of self dx to intentionally mislead the community, by all means, we must hold them accountable. But you cannot simply go about granting and revoking access from people just because someone lacks a diagnosis or doesn’t fit your idea of what being autistic looks like, especially if it’s based on stereotypes.

Moral of the story? Isn’t it ironic how anti-self dx people will 100% believe a user who claims to be medically diagnosed but shows no “written proof” of it, yet always demand written proof from a self dx person? It’s almost like even anti-self dx people can’t tell the difference between someone who is medically diagnosed autistic and someone who isn’t. Well, that’s because they can’t. While there might be common traits, autism has no set model, it is a spectrum, no autistic person is alike; Policing self diagnosed people about their self diagnosis isn’t a form of protecting the community. It’s a form of gatekeeping. If you find yourself granting instant acceptance, without asking for proof, to a person insisting they are medically diagnosed like this neurotyical mother, but then prohibit self dx people from entry entirely on the grounds of not showing proof of medical assessment, you are upholding a double standard. This is why policing autistic people’s diagnosis, self or not, is inherently useless.

So here’s the thing... instead of asking people to stop self diagnosing, what you should instead be asking yourself is, “Why do people self diagnose? What kind of medical system could possibly be in place where people feel they need to resort to self diagnosis rather than get an actual diagnosis?”

Well, it’s mainly common knowledge among most of the autistic community that diagnosis is NOT easy to come by.

One of the main reasons why people cannot get a diagnosis is due to financial/insurance reasons. It’s reasonable to estimate that by the end of 2020 almost 30 million Americans alone were without health insurance. I’ve heard costs out of pocket for an autism diagnosis are between $500-$6000. If a person or a family cannot afford health insurance—which by the way on average is around $5,400 a year for a single person and $13,800 for a family here—where are they supposed to pull out $6,000 to get screened?

You might be asking, “Well aren’t insurances supposed to cover disability?” Sure, there are options for disability care through health insurance—not even going to get into that—but like a lot of things in the US, this is a severely flawed system. A lot of private health insurance will stop or limit coverage for an autism diagnosis or assistance services once a person reaches 18 to 21 years old. In most states, coverage has a higher chance of being denied to autistic adults coming with the added age cap or ONLY covering ABA, an abusive, manipulative “therapy” used to force social compliance and trait suppression on autistic people. The fact that ABA, a conversion therapy, is covered, but little else, shows exactly what insurance companies think of autistic people: they’ll only cover us if we want to learn to be “normal”. This can leave many undiagnosed autistic adults who cannot afford analysis, insurance, or safe assistance services with nowhere to turn. If I was not on my parents’ insurance, there is NO WAY I would EVER be able to afford a diagnosis. I don’t have $2,000 lying around. The MONEY ALONE would prohibit me from getting a diagnosis, no matter how many autistic traits I presented.

When I was going through this system years ago to start a diagnosis, I was shocked to find no therapist within three hours of me was accepting adult patients. “Up to 18 only” their websites would say. And in the event I had found one (1) that accepted me as a then 20 year old with X insurance, and that person refused me diagnosis, I would be out of options unless I planned a 5 hour drive which may have also led me to another biased screener. A person seeking self financed assessment can waste thousands of dollars therapist hopping.

People will say, “Well I live in X place, and where I come from, it’s covered!” Well the reality is that everyone in the world does not live where you live. It’s not realistic to assume everyone is in the same position as you or your family to afford care or access the same resources as you. When you say, “Just go out and get a diagnosis! It’s not that hard!”, understand you are speaking from your personal vantage point where screening may be easily accessed or easily covered/is free OR you have no personal knowledge of what that process is like yourself.

The second thing that bars a ton of people from being diagnosed is the fact that when autism was first discovered, its research was HEAVILY centered on white, cis, heterosexual men. The idea that autistic people are ONLY cis, white, heterosexual men carries on to this day. If you are an outlier to this stereotype, your chances of being misdiagnosed with something else or refused diagnosis skyrocket because so-called “professionals” don’t know how to observe traits in any other person besides a cis, white, heterosexual man, and refuse/fail to recognise the endless ways in which a person can be autistic. ALL the time I hear how AFAB people will go in to get screened only to find out their screener does not believe AFAB people can be autistic, because yes, sexism and anti-lgbtq+ ideas play a huge role in the incredibly outdated diagnostic process, because autism is still believed to be an “AMAB only” thing. People report going into a therapists office and being asked questions like, “Do you like going outside? Do you like having friends?” and being told that if you agree with either of these, you cannot be autistic because criteria at some places is so backwards, you can’t even say you enjoy conversation without failing the test. Other things commonly heard during the analysis are screeners telling someone they are too smart/articulate to be autistic, gas lighting them by saying they are mistaking their symptoms for something else/making them up, telling a person they seem normal, dismissing clear autistic traits by saying they’re unique “superpowers”, or intentionally misdiagnosing a person as ADHD INSTEAD of autistic. People on social media have also pointed out what influences racism has on the diagnostic process as well and how lack of research and understanding of autistic POC contributes to under-diagnosis and stigma has only contributed to refusal of care and under-representation of POC in the disabled community, as one autistic Black woman points out on Instagram, “I found excellent articles that support and validate my feelings and experiences, but I could find no research on autistic Black people.” Additionally, because research has primarily been done on young men, this means anyone who is not a cis man and is over the age of 18 and is seeking a diagnosis has a much higher chance of not receiving one because screeners don’t understand how autistic traits may present differently in adults, especially since adults are very likely to mask. Some autism screeners are so against autism they have told clients they would only diagnosis a person autistic if it was their last resort to avoid “placing a burden on their shoulders”. These reasons are largely responsible for why autism is incredibly mis/under-diagnosed. This ask would be the length of a novel if I included every single type of discrimination and mistreatment during the evaluation process alone, but understand it can be incredibly biased, sexist, transphobic, racist, or just flat out ableist. And guess what? Though this process can take as little as a month to get sorted, that is rare. The assessment SHOULD be very short. But a lot of autistic people have reported their diagnosis took more than 2-4 years because of having to waste time, energy, and money hopping from therapist to therapist looking for someone to take them seriously, as many autistic people compiled on the actuallyautistictiktoks page on Instagram point out.

The last thing I want to touch on is this idea that people have that self diagnosing is dangerous. “What if someone self diagnoses and they take advantage of services that are meant for autistic people?” ...The Big Things you think I am going to take advantage of as a self diagnosed autistic person, like scholarship money for instance or SSDI, I do not have legal access to without a formal diagnosis. I cannot waltz into a law firm and ask for a $5,000 scholarship for autistic people without a diagnosis, because they WILL NOT give it to me!

Let me tell you some of things I’ve “cruelly taken advantage of” as a self diagnosed autistic person. I bought glasses with blue light protection, because screen and fluorescent lighting at work and even natural blue toned light from the sky lowers my threshold for some sensory input like noise and social interaction; wearing them to work everyday has improved my sensory thresholds incredibly. I’ve talked to my manager and told him I’m autistic and that I have a hard time understanding vague direction and may need to step away briefly on occasion to tend to a shutdown before a meltdown comes on at work; he had no problem with this. I use subtitles; sometimes I have trouble processing audio or reading facial expressions and tone, and being able to see the words displayed on the screen gives me a significantly better understanding of what I watch. All my life, I have been having meltdowns which I had mistaken for mental breakdowns or panic attacks and having access to resources that walked me through preventative methods and tips on what to do if I have one has been ENORMOUSLY helpful to me. All my life, I was trying to deal with them thinking they were something else; becoming aware of this and accepting that they are in fact autistic meltdowns has helped me not only go through them, but has helped me redirect stims which at their worst previously had me hitting and clawing my arms, slapping my face, and even hitting my head. I don’t know about you, but I don’t want to wait 4 years for a diagnosis to use resources I could be using to make my life more accessible right now!

People will say, “Oh well yeah, I don’t mean You are one of Those Types of self diagnosed autistic people, you clearly sound/look autistic, I’m talking about other people.” The thing is, there is no broad “sounding/looking autistic”, that’s stereotyping, and you can’t demand everyone who interacts with you show you their Autistic Card, because again, not everyone is able to be diagnosed, especially given the mistreatment and stigma present towards autistic people in the medical field! And what made you ask for their diagnosis? Because they “don’t seem autistic” to you? Why didn’t you ask for their diagnosis? Because they “seemed autistic” to you? By denying anyone who doesn’t have a diagnosis resources they may very well need, you are denying assistance to thousands of people who are without means to be diagnosed. And I am SO tired of seeing comments online on self diagnosis posts that “people don’t know what they’re taking about” as if they know us personally, like are you me? Are you my doctor I’ve consulted? Did you watch me academically research and consult with other autistic people about being autistic for over 3 years? I’m tired of “well, one time a self diagnosed person laughed at my actually autistic diagnosed friend...so all self dx people are evil” because there is ZERO correlation between a person being self assessed and their behavior towards a non self assessed person. The fact both those arguments are in use whenever self dx comes up is yet another form of gatekeeping.

Self diagnosing autism is not begging for attention or Evil Criminal Money Funneling Schemes. It is a result of a deeply flawed medical and insurance system that has failed to give proper attention and care to those who need it, it is a result of resources not made available, of safe support systems not there for kids and adults alike. You want to talk about what’s truly dangerous? How the hate group Autism Speaks has been parading itself around since 2005 as an advocacy group for autistic people and has been misusing millions of dollars worth of donation money and promoting stigma and hatred around autistic people; no autistic members are present on their board. How Sia and her new film Music was nominated for 2 Golden Globes despite it replacing the original autistic actor with a neurotypical actor, using offensive stereotypes, and using the main autistic character as a prop, and featured an extremely dangerous bodily restraint scene on an autistic person having a meltdown in public and featured very insensitive content due to Sia’s lack of consulting with autistic people to make the film (spoilers in that article).

Instead of policing autistic people, whether they fit your idea of what an autistic person is or not, redirect your efforts and your energy to dismantling systems and holding others accountable for perpetuating harmful stereotypes about autistic people that are legitimately dangerous on such a scale that they have created insurmountable damage to the autistic community. But I guarantee you, worrying over whether your classmate is “faking it” will not do any justice to the decades worth of discrimination autistic people face still today.

I understand. You care about the community, you don’t want autistic people to be exploited or taken advantage of. I don’t want to be exploited and taken advantage of as an autistic person, and I don’t want that for others! But I also understand that when we self proclaim ourselves as judges of random autistic strangers on the internet or start accusing people of faking or demanding to see medical paperwork from people when the basis of our suspicions is “this person doesn’t look like my stereotyped view on how I think an autistic person should act”, THAT is when you really run into trouble. Because if you are allowed to deny self dx people entrance into the autistic community, what’s stopping you from thinking you have the power to deny ANYONE entrance into that community?

And there is power in self diagnosis for many autistic people. When the evaluation system is literally rigged to set you up for failure and put you through unnecessary hardship, self dx is a self affirming, empowering tool to take back control from a process designed to gaslight and crush you. The evaluation process was NOT formulated by an autistic person, nor was it made to be inclusive of all autistic people. Until the evaluation system in place for autistic people is safe, accessible, and free to ALL, you have EVERY right to self diagnose.