Can anyone relate?
I just took two of the tests he recommends, and blew the thresholds out of the water. Being on the spectrum has never been a doubt for me since I discovered that autism exists.
Two things I don’t understand:
-
How do I score so highly on these tests yet still function? What is it that pushes one to be non-verbal for example as opposed to merely an extreme struggle to fit in with neuronormative behavior?
-
Why would I bother getting a medical diagnosis? What’s it gonna do for me? Heavily medicate me and fundamentally change who I am so other people can be more comfortable?
Side note: As I’ve entered my fifties, I’ve noticed my memory and attention span have started to falter a little bit. I’m curious if this is related to constant exposure to the instant gratification of the Internet, early onset dementia, or a cumulative result of withdrawing into myself so hard over the decades because my very existence seems to be a grave abomination to most people. That part I’d be curious to talk to somebody, but have been unable to find anybody that takes my insurance, is accepting new patients, and doesn’t use magic Jesus crystals as the foundation of their practice.
#2 you don’t. And this is why self diagnosis is valuable. Knowing who you are means you can learn coping mechanisms and meet others like you. Getting a diagnosis means people will question if you’re mentally capable of making your own medical decisions.
https://autisticadvocacy.org/actioncenter/issues/choices/sdm/
-
I get what this video is trying to say but I couldn’t stop thinking about how identical this all is to how antivaxers justify themselves as knowing better than doctors. To be honest if someone agrees with this video I don’t know how they could NOT be an anti vaxer, or broadly anti psychiatry in an antivaxer way.
Same.
The video feels very anti-expert or anti-science, almost. I couldn’t finish it without wanting to hurl my phone in disgust.
There’s a difference between self diagnosing a mental state that is entirely about how you personally perceive and interact with the world, and acting like science is somehow invalid just because it used to have bad ideas. If it wasn’t for science and medical experts constantly self correcting and sharing knowledge, we might still be throwing autistic people in jail or trying to drill holes in their heads to release the demons. What was life like before people invented science to study the world around them?
Just because some things can be self-diagnosed, doesn’t mean everything can.
Just because we don’t have a perfect understanding of the world, doesn’t mean science and medical experts are untrustworthy or clueless.
Just because individual people can be arrogant jerks (like my dentist two days ago), that doesn’t mean the global effort from experts in every field and from every country is bad.
And most importantly, just because a layperson can point out flaws in entrenched institutions, doesn’t mean they are more knowledgeable than the hundreds of thousands of trained experts that spend their lives trying to help others or expand our understanding of the world.
It’s like someone reporting a software bug, and because they found the bug, they think the program is a virus and the developers are somehow less familiar with how it works than they are.
Bug reporting is part of the process that constantly makes software better. Same with medical science. It’s just slower to change due to constant cultural and political pressures, despite the built in mechanisms that try to minimize those things.
The fact that anyone can be anti-science on a phone, using electricity, on the Internet, wearing clothes made of synthetic materials, in an air conditioned building, not starving or dying from a splinter, etc, is mind blowing.
The video actually proposes self diagnosis to be accepted as a step of medical diagnosis. It’s not anti-science at all, it criticizes the current situation regarding medical diagnosis.
It would be a good video about that if it wasn’t trying to undermine doctors’ credibility in the process
It’s reality for a lot of autistic people. Is it bad to point that out?
I’m glad. Thanks for the heads up.
I didn’t see this as him saying that people know better than doctors.
I saw this as him saying that self diagnosis, especially with multiple tests from reasonably reliable sources, is a valuable tool in a wide variety of circumstances, and with autism in particular, has very few ill effects and is a net positive.
Including as a first step in the official diagnosis process.
There may be a number of reasons not to get an official diagnosis. When I self diagnosed for autism about… maybe 15 years ago, there was a three year wait list for the only psychiatric diagnosis thing I could afford. (I can’t remember the details, it’s been a while, but it was some government funded program.)
I have since gotten an official diagnosis, but getting the unofficial one first was extremely helpful for me in narrowing down where I should focus my efforts.
The guy, towards the end, was even encouraging people to get the official diagnosis - if they’re able to, financially, etc. But starting with self diagnosis makes a great deal of sense.
The whole thing was about cutting down the myths and attacks around self diagnosis and saying people should be allowed to start there without getting attacked for it. That’s all it is.
I, incidentally, am not anti vax or anti science. I’m a science teacher, as it happens, and science is totally my jam. I love how he included study information on accuracy rates of self diagnosis, and misdiagnosis rates for mental health issues with the medical field. I love how he encouraged people to get official diagnoses, and how his suggestions for the medical field were to increase access and affordability for people. This video did not strike me as anti science or anti psychiatry at all.
It’s not actually anti-science though. He uses actual studies to back up his point of view. It is against the current medical system which has been proven to not always follow the latest science despite what doctors may claim. This is especially true for psychiatry and for patients who are marginalized. Doctors maybe aren’t as scientific as people would like to believe, after all their job isn’t scientific research.
Because most people use scientifically proven tests to determine whether or not they are autistic? The ones that are actually used during diagnosis by a doctor as well.
I’m interested in understanding what the supposed benefits of being diagnosed as autistic are that people would fake misrepresent symptoms to get a diagnosis. Like, what do they think someone is trying to achieve from a diagnosis besides answers/insight, a path, and appropriate health care?
None. There are none.
I have a strong suspicion that these are the exact questions that folks who claim that self-diagnosis is invalid have never asked.
I’ve been told it’s to get attention. I don’t personally see it because as said in the video you either get attacked for being autistic or get attacked for being self diagnosed but apparently there’s positive attention as well.
Jeez. In my experience, there are both positive and negative attention, but I can’t get one without the other, nor do I get to choose which one I will receive. Plus, I definitely get more negative attention than good attention from being autistic. In fact, I think that’s the point of this video. The person saying they think they are autistic are immediately responded to with negative attention.
Depending where you live, it may be required to get help from specific service providers.
Some countries like the Netherlands recognize the “Auti-pass” for granting disability accommodations.
Its barely anything a neurotypical would desire and my wife suffers imposter syndrome every time using it because we don’t look different.
I suspect the “fear” is that because Autism is permanent you could use it to build a case, convincing the right people that you are unable to work and should receive government benefits/income.
This is in the face of the majority of Autists wanting to work, even if they cant and government benefit’s usually hardly being enough to survive on.
Interesting. In that case, I think the general practitioners could just trust that the thorough assessment would do it’s job properly and avoid misdiagnosis. It’s not like the GP is the one providing the diagnosis at all. They’re just putting in the referral.
Furthermore, even when it comes to the actual evaluators, I think that the stance could be that it’s better to incorrectly give people benefits than to incorrectly deny people benefits. By playing benefits police, they are denying services to individuals that really need them just to avoid giving them to those that don’t. Even with the Auti-pass and whatever other benefits come along with the diagnosis, it’s not an amazing life of luxury. The whole thing just strikes me as ridiculous and ultimately rooted in latent power and control issues.
I didn’t make it through the whole video, I had to stop when the “doctor” started capitulating. In my experience people who hate self-diagnosis don’t listen, period. They don’t care about how much time and effort you’ve put into something, and this is an issue with society in general, people will automatically minimize the effort you’ve put into something if you don’t have a degree in a relevant field. This is an even bigger deal when it comes to anything medical because for the average person doctors = unquestionable gods.
My vaccine denier uncle has and is putting a ton of time reinforcing his conclusions.
A colleague of mine that’s into ‘crystal vibrations’ knows every rock - and how it ‘affects your health’.
And you should see how much of their time qanons are spending in their larping or the religious of every shade in their faith.
Personal effort may be what brought you to the expert but is not and can’t be a sole determinant.
Otherwise you might as well write yourself a script or a diagnosis - and not even docs are allowed to self diagnose.
Those wackadoo folks want that to be real. No one wants autism. People find the descriptions of autism and then get happy that some things in their life start to make sense. Then they get sad because an autism diagnosis can harm your life.
Then they watch some train videos.
Dude, have you seen the model train videos that are filmed from the train’s pov? They’re so cool.
There is a model tank that you can control with pov camera and real tank controls
Then of course if you DO have a degree in a relevant field, then they’ll claim you are just some academic boffin with no idea how the “real world” works…
Of course self diagnosis is valid. But you can’t expect everyone to accept it - that’s just life, but people do not have the right to tell you that you are wrong either.
However without a formal diagnosis there are no legal workplace supports, access to certain services (I live in Australia so YMMV) no access to certain medical services and medication and other things that actually require a formal diagnosis.
I am dubious though when people self diagnose but refuse to tell anyone other than the internet about it because they feel they will be discriminated against at work or by their peers……because for the rest of us who ended up with a formal diagnosis as a child we didn’t get that choice…so in that sense that view is a little bit privileged in that you get a choice many in the rest of the community did not….
deleted by creator
I didn’t realize that I was autistic until I was much older. Shortly after realizing it, I signed up for a local program that supports autistic individuals. During the intake, the specialist pointed out that a lot of peculiar experiences between me, school, teachers, and my parents were likely part of a school program for autistic students. It would also explain why I was put in a special school, and in that school, in special classes. However, I don’t have definite proof of this, so I’m considering contacting my grade school to see if they still have my records. I think it would help me make sense of my childhood if I have proof that my parents and school knew I was autistic.
Way too much. I’ve been told so many times in this community that self diagnosis isn’t valid and I don’t get to say I’m autistic until I have an official diagnosis that says so.
Fortunately, there are still some people here who don’t think so and that’s what’s keeping me here.
I’m sorry you had that experience. We specifically have a rule against gatekeeping. If you don’t mind, can you please link in which you saw people saying self-diagnosis isn’t valid?
Well, even under this topic people compare people who self diagnose with people who are antivaxxers.
Otherwise here are two links. The others have already been deleted because you’re doing a really good job here
Thanks for linking and sorry for the delay. I reviewed both of the links. In the first one, there may be some implied gatekeeping, but I understand that the purpose of the discussion was to cover self-diagnosis. Users were asked for their opinions. They weren’t actively finding people to tell them they weren’t autistic. The latter is what we are aiming to prevent with that rule.
For the second link, it seems like that might have been an honest question rather than gatekeeping.
We’ll let those stay for now since they may help others review conversations on self-diagnosis. However, please report gatekeeping in the future. We don’t want anyone here that knows they’re autistic but cannot access a medical diagnosis to be further marginalized. As autistics, we’ve all been bullied enough.
Not only autism. Show me a doctor who really listens to a patient and I show you a man running to that doctor.
My primary and gender surgeons listened to me, but others I think are burned out. I saw Drs, nurses, therapists not listening to me and others and it reminded me of myself when I was in a help desk job for almost 4 years. Like you know 90% of the problems are solved with quick solutions and some assholes are so at the slightest disagreement with how you are fixing the issue you label the customer/patient as an idiot. I had to be humbled by a newbie to see I was jaded. I still try to remember that while I’m not helpdesk anymore, I’m still helping internal teams migrate to docker.
This is why I tell people I was diagnosed in high school, and I give them the name of a well known doctor that retired around that time.
Anyhow Tiktokers moved on from pretending to be autistic or having tourette, now they are all into pretending to be dead “as a prank”
I get the point of this video but only applies when the country doesn’t have public health, there’s no excuse to not get a proper diagnosis if it’s free and available.
there’s no excuse to not get a proper diagnosis if it’s free and available
I don’t live with public healthcare, but I’ve heard that availability can be difficult in countries with public healthcare. What I’ve seen many people in those countries is that they are either denied an referral for an assessment by a general practitioner that likely doesn’t know what to look for, the general practitioner is denying a referral to make a misguided point, or that the wait to be assessed can be up to 3 years.
I really enjoyed watching this. I agree with many of the points of this video. I do think if you can get an assessment done, you should. But, not everyone has access to that. In many countries it is very expensive to do so. I’m personally getting assessed in the future. But it is certainly expensive, and not everyone can afford to get it done.
