Is Autism Self Diagnosis Valid? - Tiktok Gave Me Autism Reaction
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- čas přidán 8. 10. 2023
- Thomas Henley reacts to Alexander Avila's video ''TikTok Gave Me Autism: The Politics of Self Diagnosis" and gives his own personal views on self-diagnosis of Autism
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I can't be formally diagnosed because it would end my career, but when I discovered the autistic community, I realized that most of the things I thought were unique personality traits were just straight autism. I think it's totally valid, and the accuracy of self diagnosis has been found to be around 80% in alignment with formal assessments.
@@TubeWusel I can't post links in the comments, but google "Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults" and then stop replying to my comments because I don't want to see you in my notifications again.
The fact that you couldn't find it yourself is extremely telling, and is indicative of someone with a lot to say (angrily), but no desire to actually listen or learn.
Autism is not a mental illness but 70-90% of autistic people have at least one co-occuring mental illness.
Too truw😊
@@Fawkseyness Autism has to cause you problems or you cannot be diagnosed with it. Same as mental illnesses. I suppose years later you might still call yourself autistic but not have problems from it any more.
The same families that tend to have autism are also more likely to have schizophrenia and bipolar disorder. There are some indications that some of the same genes underlie all three disorders.
Certainly DSM categories are social constructs. I am just pointing out that even within our currently accepted social concepts most autistic people are also mentally ill. So I have problems with people who keep stressing that autism is NOT a mental illness.
@@Fawkseyness I think being autistic is different than being trans. I do suffer from autism even without society. I have worked on artwork for 15 hours overnight without eating's, drinking or sleeping. When I tried to stand up after this all my muscles hurt really bad. I was alone in my apartment. Time management is hard for me. Executive functioning is a problem. The emotional disregulation is very hard to take.
For me autism has positives and negatives. They aren't just negative. I like the way my brain works. I am very creative. I like being Different and seeing the world differently. But I think it is not correct to say that autism is all great. Especially for people who need to be on disability.
@@Fawkseyness I wasn't speaking down to you but apparently you are speaking down to me. You said autism across the board was not a problem except if society causes you one. I disagreed. I never said that autism was a problem for everyone. I said it is a problem for some people including myself. If you can't handle any disagreement that is on you.
@@Fawkseyness The artwork problem was not for work. It was on my own time. I am on disability. I have trouble functioning every day on basic self care even. It would have been interesting to talk to you but nevermind if you are going to be rude.
I really believe it is if you know the diagnostic criteria .
I see autism as partly biological because I have physical problems that are more common in autistic people.
The weird thing is that I've just learned that there is overlap between autism and Ehlers-Danlos Syndrome, e.g. poor proprioception.
@@andreawisner7358 Yes, there is a link between Autism, Ehlers Danlos and POTS especially in women but in some men also.
@@andreawisner7358both of those things are helped by a biologically appropriate diet, so called carnivore diet. Dr Anthony Chaffee and Dr Ken Berry have tons of videos about this.
The university of Texas would tend to agree. They've done some studies on it. Carnitine deficiency plays a role.
It is highly heritable can't remember the exact statistics.Its polygenic meaning lots of genes are involved and these genes are linked to in genes for physical traits.The most common are things are digestive issues like gluten intolerance Ethlers Danlos and pain conditions.
CHRONICALLY underrated content. Thankyou
Really difficult, of course self-diagnosis can go wrong. However, going to "experts" with years of studying and experience, it can still go wrong. Their bias can be induced by financial incentives. Or they have early learned prejudices never unlearned if part of the prejudice is that autistic people are confused hence autistic people should be disbelieved. Some are raised with boys only, no girls, no women, no adults and no non-whites and never got that adjusted. So in essence, you can self-diagnose and go wrong for almost for free, or spend hours of time and thousands of dollars on a diagnosis and still know nothing for sure because the outcome cannot be trusted at all due to the corruption in the part of the medical system. Even if they tell the truth and are correct, you can't be sure they are, for they have a history of being wrong so often. The only thing you do know is that the society doesn't regard you as "normal", because that will be communicated. Everything else will forever remain an unknown. Which means any coping mechanism out there is just trial and error on an individual basis. The lack of accuracy in diagnosis is intensely frustrating. In a sense, self diagnosis, going to "experts" or rolling a dice can all lead to a correct diagnosis, mostly based on luck, not on any level of true insight. Like how a clock standing still is telling the correct time at times, even if you can't know when that is.
The question is not just if self diagnosis is valid, but if any form of diagnosis has sufficient accuracy, beyond just flipping a coin with one side saying "autistic" and the other "neurotypical/normal". Yes, the coin flip outcome can still be wrong, but at least you don't have paid a fortune for a wrong or incomplete diagnosis or an untrustworthy diagnosis that might or might not be correct and with no way to verify.
I got diagnosed a decade ago, and i still struggle with it. Knowing if I really am or not. My verbal skills are really poor, below average. I can’t talk fluently, express myself easily. My word/vocab retrieval is pretty bad. If I could talk better, I would prob be a more social person. Have a completely different life. But it’s not something I can improve. Then I come across a lot of people with autism who barely have issues with communication, talking. I have slow processing speed, but am pretty empathetic. Very emotional, was destructive/promiscuous in the past, and I probably have bpd, attachment issues.
I got a second opinion years ago, and he agreed with my original diagnosis. But it was just an hour long conversation and he was pretty biased to begin with. If he didnt know about the diagnosis he probably wouldn’t exactly think about autism.
🥲 Diagnoses are difficult and i’m pretty much stuck with this one. Can’t get specialized treatment for trauma, self harm etc. Cause they want to explain everything through autism. Mostly i feel like i’m just grouped in with autism and they didn’t care to really look, understand what might’ve been ‘wrong’ with me. So yeah I get it.
Also living in Europe/netherlands, I didn’t need to pay for a diagnosis, having a therapist etc.
@@Aruena I'm on the journey of (self-)diagnosis, also in the Netherlands. I feel many professionals are still stuck in the past with outdated stereotypes about autism. They maybe very good at capturing the classical "disruptive" kind of autism, but not the more covert, hidden ones. They don't get how the mind works behind autism, why autists behave the way they do, nor the effect living in an alien society has. So yeah, they won't get that trauma is often a result of autism, which deserves recognition in its own right, and treatment. Everything needs its definite category over here, its own neat little box. Verzuiling in a way. They can't see that that box has many drawers, and that the drawers are all open, the contents falling out and getting tangled. The Dutch can really backward like that. Also a result of the "doe maar gewoon, dan doe je gek genoeg" culture. Don't stick out, don't disrupt, and you'll be fine. Yeah, not. The autistic individual who's not disruptive doesn't get recognised, and even if they do, the complexity of resulting trauma etc are deemed disruptive. Which. make the professionals uncomfortable (no neat box 😱) and their peace of mind takes precedent over the welfare of the people they're supposed to help.
Ik hoop dat je de hulp vindt die je nodig hebt. 🫂
@@AJansenNL yeah I’m getting enough help. Though still unsure if I truly have it. But i worry, think about it much less now. 😅 With or without it i still have my issues, and need to work through that. It’s not just autism with trauma, which (dutch) health care providers have issues with. Trauma in general isn’t always recognized, treated. Even c-ptsd isn’t in the latest dsm I think.
I don't agree with Simon Baron Cohen and the extreme male brain theory. It makes no sense.
It is ridiculous
It based in stereotypes and is more to do with interests and personality traits.
@@autisticautumn7379 I have read that autistic women tend to fit into the extreme male brain theory better than autistic men. Which, if true, is hilarious and ironic.
I've already gone through imposter syndrome which lasted more than eight years. Autism, although it's not a mental illness, would have more research done on it if there was a financial solution or treatment such as medication. No research for human benefit is incentivized without a prescribed treatment. For this reason, I am very hopeful for the people who fight and petition for a better future for Autistic people. I also find this frustrating because I am disabled although not for the reason that the U.S. government thinks.
Very insightfulthanks for this🙏
Self diagnosis is the first step toward diagnosis !
This. I've already felt like an outsider all my life. I definitely fit the mold of middle aged woman with ADHD who never got diagnosed because girls where rarely diagnosed in the 80's. Same with autism. However I would really like answers because I'm certain I have ADHD. Again only boys where diagnosed back then and I've always struggled with focusing
Second step is to magically have thousands of dollars.
it definitely is not
Thats one thing thats worrying my partner about me getting a diagnosis, we want to adopt. (We're gay so theres no other option). It shouldn't in the UK but there's still a possibility it could.
THIS IS SUCH A GOOD VIDEO 😅❤🎉
Since I certainly do have monotropism, and ASD is on a "spectrum", I feel no need for a formal diagnosis of ASD. I was 'formally' diagnosed with dyslexia in the 1980s. Monotropism accounts for some other traits such as meltdowns and social anxiety I have. So, if people ask, I say that I am "on the spectrum". Cheers!
After looking back at my life, myself and everything for years. I seem to have both CPTSD and Autism. I have symptoms that overlap, but many specific to each. I was diagnosed with ADD as a kid, but some things cropped up in my early 20’s (chronic migraine, stomach issues and insomnia) and apparently thise are signs of being undiagnosed in adulthood. Theres so much that makes so much sense from this perspective. Im just literally too poor for a real diagnosis so I’m sitting here in my 30’s questioning my entire life and reality. 3 years of research and this is where it all leads back to. Those 2 things..I’ve talked to actual Autistic people I know and I got a combination of “i could have told you that”, “YOU SOUND JUST LIKE ME” “dont even waste the time and money, I am, and you definitely are”. But im like I’m not allowed to say it until a piece of paper says so. From my perspective, the only options are undiagnosed CPTSD combined with Autism, or I have about 1,500 different medical issues with no relation whatsoever. Idk. My entire life can be described as “I feel like there’s something wrong with me that everyone knows about but wont tell me.” Based on a lot of how i was treated my entire life.
Here’s how I define our experience. We are limited choice chemical reaction machines.
I was diagnosed autistic an placed in special ed as a kid. I just had genetic testing and i actually have DEE (developmental and epileptic encephalopathy). I do think genetics plays a huge role. I also think self dx is valid because my parents actually rejected my dx and taught me autism isnt real. So i rediscovered my dx by watching videos about autism and relating so hard.
Yes😊
If autism is based on specific genes, I wonder what would happen if the expression of those genes changes in non-autistic people
Absolute truth exists, but subjective truth, or group rationale, is what’s agreed on. Not necessarily to fit a narrative but also because we (humans) are lazy and outsource our thinking and assign the authority of any subject either to people, or a book that has a convenient answer. They (we) think that we don’t have to know or think about “knowledge” when we can just pull up what we need on your phone
I was diagnosed. However this theory of mind bit seems extremely bizarre to me. I have been excellent at that but I have a physical brain development effecting invisible handicap (after the surgery it can not be seen) that make me socially awkward and I do have some sensitives in my nervous system. It sucks that there is no neurodivergent No Otherwise Specified diagnosis. I requested it to be changed because the people who see my diagnosis make false assumptions about my capabilities and interests. Anyway, that said, I have met one autistic woman who I have helped with ToM stuff online. It can be absolutely devastating disability especially if they grow up in highly reactive families that lack self reflection.
I'm undiagnosed, and I dont think it's complicated whether I deserve accommodation before someone with an official diagnosis. Obviously I don't. This argument is actually against accommodation at all. Its disingenuous. This is purely a moving of the goalposts.
Theres so many negatives that come with a legal Autism diagnosis, anybody willing to take on those consequences is either in need and serious or young/immature/foolish, and the two should be easy to parse out, especially for professionals!
The university degree is from Brown, in Providence R.I.
I could go and earn my MPsy in less time than it would take for a diagnosis, so THEN I could be qualified to diagnose ASD, but then I’d probably get criticized by doctors for self diagnosis, instead of tic tok and CZcams creators, lol
Can self diagnosing mean you are entitled to work place adjustments?
Not to my knowledge, but you can take your self 'diagnosis' to a professional for professional screening and validation
**Although this comes with serious consequences and risks, and should be considered very carefully as such a diagnosis will have serious effects on many areas, including travel and immigration, employment, legal disputes of every kind, and custody/support disputes
A diagnosis is just one opinion about a condition that is by definition pretty vague - a spectrum. It is frustrating, but autism is not a concrete well-defined thing that can be objectively true or not.
Whats crazy is that this same thing can be grounds for barring immigration to some countries, negative outcomes in rulings in court more broadly, and child and spousal disputes
Unfortunately the people I've come across who are adults who have self diagnosed have diagnosed personality disorders. Literally the AQ test and the graph test shows there is no chance they are autistic and they don't meet the criteria but because they have a P.D they are still going round telling people they're autistic, signing up to autism courses and are taking a space on the waiting list from someone else. It's disgusting. They literally said "I feel autistic so I am autistic" and got really angry when I didn't validate their delusion. I have difficulty interacting online in some autistic groups because they're full of self diagnosed people who have a different experience of what it's like to be autistic (because they're likely not). If we are going to allow PD people I'm rejecting my own diagnosis. I don't want to be associated with such toxic people. When you are diagnosed with a Personality Disorder other things are ruled out but these arrogant people think they know better than doctors.
I’ve come across a couple of the people you are characterising, so I understand where you’re coming from!
I’m not sure about how we should distribute resources if being honest…
I do however try to accept self-diagnosed individuals within the community…
I’d hazard a guess that many of these individuals could choose to adopt other diagnosis’ if autism isn’t an option.
Sadly there will always be people out there trying to use a diagnosis for personal advantage, we just have to focus on those who benefit from being included
@@ThomasHenley oh yes said person has previously self diagnosed with d.i.d which is how we met. I am diagnosed with both and self diagnose is a massive problem in the d.i.d community and I see how it's destroyed the d.i.d diagnosis in the last 10 years I see autism going the same way. It's no longer a valid or useful diagnosis. It was never well researched and so on in the first place and now it's just a joke. I see the same happening with autism..
I have no problems with people saying "I might be autistic or I am probably autistic or I suspect I'm autistic" while waiting for diagnosis like I did when I was on the waiting list but I never ever said I am autistic until I actually had that validation.
PD is commonly given, usually without meeting criteria, for the sole end of erasing decades of strongly met autism diagnosis. It is vile to rewrite any subject's existence for petty control agendas.
@@eScential so you don't believe in the validity of the AQ and other validated tests? I think it's vile to claim a disability they don't have. What's the difference to that woman who claimed to have cancer when she didn't or the woman who claimed to be in 9/11. Why do the autism community in general feel the need to protect fakers? I don't understand it.
If you think it's ok for my ex friend to fake autism then it's ok for the cancer and 9.11 and all the other fraudsters. Fraud is a crime. I really don't get it.
Fair enough people who do screening tests and score high but not fair enough on those who score Neurotypical repeatedly yet still insist they're autistic. They're just bullies.
@@ThomasHenley See my post here.
There is only one true privilege, that's green privilege. Money. Everything else is illusory. Funny thing, as the money is also illusory.
I have got into an argument recently with one of my trolls who has decided to self diagnose themselves with autism. At the end of the day a self diagnosis of autism is only valid with professional intervention. The issue I see is my troll has a history of parody, it's difficult to trust them so the story of The Boy Who Cried Wolf comes to mind.
Lol, if your SM algorithm is putting a bunch of neurodiverse content in front of you, that should at least be a yellow flag. I feel like a lot of the pushback to selfdiagnosis comes from people who fit the criteria but resist the diagnosis.
😅 if its become cool to pretend ✌ youre autistic thats dope 😂
Personally I don’t believe self diagnosis is valid, I understand it is very hard to get an assessment but these people (assessors) have been trained and will be dealing with this day in and day out, they will know wot to look for (traits/signs) and see all the small nuances that others may not see.
Exactly!
That's just ignorant.
My daughter was diagnosed at age 30, but I was taking her for help from the age of 2 years because of challenging behaviours. She had a history of misdiagnosis and inappropriate medication. 2 years ago she learnt about autism she thought it sounded like her and got an assessment through an autism specialist. I can now see she definitely is and don't understand how professionals missed it. I now self identify despite a psychiatrist telling me I am not. I am like my daughter and my diagnosed grandson. How come their challenges are autistic and mine aren't? Self diagnosis at age 62 has been life changing.
If you heard the ridiculous reasons why people have been denied diagnosis or even assessment, you'd not have this much faith in these professionals.
Self diagnosis is the first step to seeking a diagnosis.