My psychiatrist basically said the same thing. I brought it up on a regular check up after I've been furiously combing through the internet for a week straight and doing all of the tests I could find. I found that I can relate to both official medical descriptions of autism as well as lived experiences of autistic people and, apparently like many others, I seeked official stamp of approval that I'm not crazy. She discouraged me from seeking an official diagnosis because I didn't plan on using it to get help from institutions where I'd need an official diagnosis and because people are still very prejudiced against autistic people, or, more broadly, against people who are in any way related to psychiatry (especially in my country). She's currently treating me for depression, and I'm seeing a psychologist to, essentially, improve my executive functions. In relation to the prejudice against psychiatry, she told me that diagnosis of depression can be voided (should I get better OR should it be an issue when applying for a job) while ASD, being neurodevelopmental disorder can not. So, in essence, the only benefit I'd get would be an official validation of my experiences, to which she told me:"You experience the world the way you do and that's something personal. You don't really need an official diagnosis to validate that. People who respect you will acknowledge your experiences without a diagnosis and those who don't respect you will dismiss you even if you had an official diagnosis". And I think that's a quite nice perspective.
"You experience the world the way you do and that's something personal. You don't really need an official diagnosis to validate that. People who respect you will acknowledge your experiences without a diagnosis and those who don't respect you will dismiss you even if you had an official diagnosis". This is so true.
Your psychiatrist brings up a few good points. Maybe I'm paranoid but I'd be a little worried about ending up on a forced-sterilization list a few decades down the line, or even some kind of low-key employment black-list if I was working outside of tech.
As I asked my CBT-therapeut, a good one, who has followed me over 10 yrs for cPTSD "do I have Asperger's? He answered "labels are not of great help. What is important for you is what you can do, what works for you, and what doesn't" But he did help me as an Aspie! A lot of clues about that. PTSD brings money, ASD at my age not. I believe he wanted to avoid any labelling because my mother had yelled at me so often in my teenage with such an hatred that "i was crazy". I see still her horrible face, her cruel voice. Fully traumatizing A label here could have been alike a fire brought in contact with fuel. But the self-diagnosis ( i got the name, naming experiences are good for dealing with them, reducing fears) brought me a huge relief! My mother can't shout any longer in my soul. She is dead anyway. And it explains so brilliantly how NTs have felt offended, outraged, yelling at me, sacking me, rejecting me in the most cruel manner, so often - despite my high IQ, that i could have thrown away in a dustbin. Now I am living in peace with me, with you all, in retirement.
Hi, fellow aspie from russia here, with a scary story. Our psychiatry is in a horrible state. I was warned things can go horribly wrong if I try to get help. Heard about really bad experiences. Despite that, I decided to try, at least to solve social anxiety. I regretted my decision instantly. The evaluation process was short and pretty far from professional. I was diagnosed with schizophrenia and, I kid you not, a half of existing personality disorders, for ridiculous farfetched reasons, yet they somehow failed to address my actual complaints. It was as stupid as "You once said you don't have "energy", that's magical thinking, so you must have a schizotypal pd. You also said you're irritable, that's borderline pd." and so on. Literally. They told my SO "it's probably too late, it's only going to worsen from now on" and I should be put in asylum for good, plus they won't give me any meds unless I do so. When I said I don't agree with the diagnosis and they might really want to find another explanation, they laughed straight into my face and basically brushed it off as delusions. After the diagnosis they started to treat me like I wasn't even a human anymore. I mean, what the hell, even if they were right, schizophrenics don't deserve that attitude! Me and my SO walked away furious and never came back. From what I've heard, it's a very common experience for people on the spectrum all across the country, and sometimes outside of it. There maybe are a few young and "progressive" specialists out there, who *maybe* can spot adult autism, but they're hard to find and expensive, not everyone can afford that. As someone who genuinely wants professional help, I hate to say this, but I have enough problems in my life, and I'm sure others do, too. Self-help works good enough for me. Pardon my rant, but people who seek for diagnosis might as well want to be aware of stuff like this and take it into consideration. I don't want to discourage anyone, but please, be careful. TL;DR: "Hello, I think I have ASD and I thought you might he-" "Jesus christ, you're goddamn schizo psychopath! Lock them up!"
Stay safe friend. I haven't any advice accept for that. Maybe just keep self studying on the issue, read books and try to work out the things that cause your life stress and find coping methods. If what you say is a common system, stay away from that system.
@Valera Ost. Scary 😱 and that’s the problem, besides the cost. Very few of the professionals are up-to-date with the latest understanding of adult autism. Being labeled with mental illnesses such as schizophrenia is very probable. It brings to mind the movie “One Flew Over the Cuckoo’s Nest.” But I think an accurate diagnosis could be very valuable and useful in the work setting, for therapy, and just in general - for validation. So it seems most important to pick your professional very carefully.
It's because autism must be diagnosed by neurologist, not psychiatrist. Neurologist-psychoterapeut is a perfect choice. But as far as I know, they only diagnose children.
I've had the same experience in Denmark - I was diagnosed with Paranoid Schizophrenia for unfounded reasons as well. I've never had any sort of psychosis - I'm heaping pile of what they'd call "negative symptoms", a.k.a. bad executive functions. I questioned the diagnosis so many times, did my own research and presented them with better options many times, but they would not budge. Everything was because of Schizophrenia, even if it did not fit with the diagnosis at all. I used to joke that if my leg fell of they'd blame it on Schizo. It's outrageous because the psychotic symptoms are really the main basis of Schizo and the executive troubles can fit so many other diagnosis's, so to claim that "some people can have Schizo without psychotic symptoms" is really going out of your way to make it fit what you want it to fit. They also always warned me that I would probably get psychotic at some point. Having the label as Schizo absolutely sucks when it's not true - it's such a "taboo" and serious diagnosis in the way that people with the diagnosis tends to be seen as someone who might cause trouble in one way or another. There were several opportunities I reached out to that told me I wasn't allowed because of my diagnosis. When people asked what my diagnosis was I used to never tell them the name, but explain my symptoms. It makes you feel like people won't take it seriously, being able to simply say "I have ASD" is such a relief because I don't have to keep explaining that I don't fit the diagnosis and I don't have these and these symptoms. I'm so obviously ASD that I feel confident that I could tell someone to go look it up and they'd have a good foundation to understanding me and my troubles. I hope you are doing okay despite this happening to you. I know for me it messed me up so bad - especially the meds they forced me to take because I was underage at the time.
I value honesty, and don’t feel I have the right to flatly say “I’m autistic” without confirming it’s true. Until then, I rely on qualifiers like “I suspect...” or “I have reason to believe...”
The problem is I've read so many stories of bad psychiatrists who choose to dismiss people over small things like "you make too much eye contact so you can't possibly be autistic despite you ticking every other box" They seem to especially have difficulty with older people who were missed and have spent decades of compensating an hard masking, to the point they'd just flat out pass tests as NT. Women seem to have more problems with this as well and get misdiagnosed with BPD instead. Privately it's also disgustingly expensive and since a lot of autistic people are generally lower paid because of their disability this is extremely hard to cough up the funds needed.. only for someone to dismiss you over something small. I even read a story where a woman was dismissed because "women can't have autism" like.. that's pretty depressing. I think community validation was enough for me. Researching it explains my whole life. I'm confident I'm an aspie without the need of the potential stress and anxiety and financial cost of an official diagnosis. It won't change anything for me if I got one. There's no support or medications to help me locally so there's no point.
Hi Rachel, I'm self-diagnosed autistic and totally share your way of thinking. However, as another commenter was suggesting, when every way you turn only confirms again and again that you're autistic, there comes a time when you could also claim "I believe with a very high probability that I am autistic and I also believe with a very high level of confidence that my evaluation is at least as likely to be accurate as the average doctor's is." I have started abbreviating that as "I am autistic." On the other hand, the way you put it, at least for my autistic way of thinking only serves to confirm your opinion of yourself. Even a doctor's opinion should surely carry your caveat. They could even give a diagnosis falsely saying someone was autistic. So for me you only gain in terms of consistency and credibility by using the "high probability" caveat.
@@tonyfeld5403 I'd be less inclined to be as cavalier when it comes to asserting as fact what could end up being a misrepresentation, especially around people who are autistic. If a doctor's opinion requires caveats of the kind we're talking about, you need a second opinion from a doctor who is trained and subspecialised in the field of ASD. Asserting _"high probability"_ isn't a caveat, it's a falsehood: _probability_ is an objective, quantifiable measurement, which is not possible for you to obtain from subjective introspection. That's not in any way to say that you're not autistic. But bear in mind that ASD is a highly specialised area of psychiatry that takes a decade to learn about, and that there's a reason that doctors don't (can't) diagnose themselves. Thus claiming that a bit of reading and personal reflection brings your self-assessment up to the level of an ASD specialist is an egregious claim, which, if anything, gives the impression your ability to self-assess is possibly very poor. Rachel's phrasing is humble, honest and genuine. Importantly, it doesn't run the risk of misrepresenting a group of disabled people who already struggle with public perceptions of what people think autism is or is not; and doesn't risk alienating those if later in the discussion, it's revealed your notion of "abbreviation" is someone else's notion of misappropriation.
I'll just get my probability meter out, wait - it says there's a 95% probability you are entirely correct! But having said that, I have virtually zero opportunity to see one of those doctors of whom you speak and at 57 it's going to be tough to get a diagnosis in a country where autism is considered an incurable disease. Oh well, I guess I'll just have to disappear then.....
I need a diagnosis, because i went my whole life feeling like an imposter, like i never belonged to anything, nit with my family, nor my friends , and i just blamed it all on me being a bad and poor individual. But after doing a lot of research i finally realized that i might of had finally found what i am , who i am , and that i wasn't alone , and if this little bit of hope that i managed to gather lately will be disregarded i will feel very lost , more lost than i ever was
Be brave and cultivate people you can confide in! Inside the aspie mind is a pretty constant confusing chatter and no one knows you better than you! Maybe find a group?
Well said. For me work is a consideration. Ironically I am a nurse and work in an ER and I have observed throughout my career diagnoses of different things being used against staff. Do you want your boss and coworkers to know that you have it? If I have never gotten a formal diagnosis I can sign all of my paperwork officially “no”- and I wouldn’t be doing anything illegal. Life on the spectrum is difficult enough especially if you’re independent and or alone. “Coming out” can use up a lot of emotional energy and throw your life off the rails.
@@jenlovesthisstuff luckyly in other countries - e.g. Germany where I live - it's actually illegal for your employer to ask you such things / force you to reveal diagnosees. I think there might be some exceptions to this clause but only in extreme cases/very dangerous jobs.
I’m 60. Some months ago I tried the AQ just out of curiosity and scored 44. I was very surprised, so researched and tried more assessments and almost always scored high. I honestly had no idea, because I didn’t think I matched my impression of what autism is. Once I posted my self-diagnosis on various Internet places, I have had the feedback that friends with autism had already assumed I was autistic! I’m really grateful for your contributions - they are some of the most helpful I have come across.
I got my official diagnosis this week. There is certainly a different feeling from being self-identifying to being diagnosed by trained professionals. I think I was happier with it just being something I knew for myself but I can't go back now. And I wasn't ever going to be able to fully accept it until it was officially diagnosed, so it was sort of Catch 22. I'd say to anyone looking for a full diagnosis: be absolutely sure you want it as there is no going back.
I really appreciate how this is framed. I think the “valid for what?” question is so important but missed in the some of the discussions I’ve seen. I have that external validation through the autistic community, and seeing myself in others for the first time at 33 is good enough for me. As I’m not seeking accommodation, my self identification is enough to help me understand and explain myself better.
@@stephenhowe4107 yeah, I think that's where the true meaning of 'my truth' comes in. One person knows something to be true, but they have no evidence to make that an objective truth for all. So 'my truth' accepts this by not having to prove or justify your truth to others, (agree to disagree) BUT also realise that it can never be accepted as objective truth for anyone else when there is no evidence. Live and let live, does not mean socially coerce, through self appointed victimhood and scream 'oppression' when one does not get their way... That would be entitlement, and narcissism.
@@YesBruv105 : Perhaps I should explain more. I am both Aspergers and Alexithymia, but currently not officially diagnosed. Having said that, a friend of mine who has known me since 1981 at University, is a retired Clinical psychologist, says I am autistic. Independently of her, another friend of mine, an expert at teaching difficult children, American, known me since 1993, says I am autistic. I have also done Professor Simon Cohen's online 50 question test. 28 questions is enough to rate your chances as 85% you have Aspergers and I scored 37/50. My father before he passed away recognised this in me. And I have done the Toronto test on Alexithymia and scored highly. Having said this, I thought a work colleague had Asperger's and said so. He said he has been tested twice, and in both cases the answer was no. Instead he had dyspraxia. I was shaken by this and so I say leave diagnosis to the experts but maybe get more than 1 test by independent people if you are uncertain.
Seems a doctor would need you to answer all kinds of questions that only you could answer before he could reach a diagnosis and that sounds like what fake psychics do. I am autistic, 65 years old, and I dont need to tell anyone about myself to have them turn around to tell me what I am. Thanks for videos O:) '
They also have you answer very specific questions that might not capture the whole picture, and the questions are often about your time as a kid, which you can’t really remember well anyways.. and then they tell you you’re wrong in your understanding of yourself because they have “criteria” and “work a lot with autistic people so they know”.
I went to a doctor for a professional diagnosis for myself, since I struggle with my self at times. I just wanted to confirm this 'officially' despite knowing I was definitely on the spectrum. I got my diagnosis on Tuesday and I am both happy and not, for finally having some clarity about what I felt and how I interacted with the world. Took me 35 years to get here, but here I am. I still believe self-diagnosis is valid and dislike the gatekeepers that pop up occasionally.
I see so many people here validating self-diagnosis, I think that is so beautiful - Maybe we can be the support for one another that we can't find in the mental health industry (that's one of the problems right there, it shouldn't be an "industry"- you cannot monetize health, that f-ing insane... And yet America beats on, battering people who have already been battered enough by life- if you diverge from typical in ANY way you are screwed, especially in this country...)
Absolutely. I strongly suspect I am autistic based on my own evaluations using online tests and due the deep connection I am having when consuming content like this from Paul. Got my appointment booked for late this year though...
Thank you for this information. I'm in my late thirties and only a couple of months into realizing my autism. Your 25 questions video was really a big lightbulb moment. I feel like a huge weight has been lifted off of me.
Same. 38 and saw the signs you might be autistic and then other episodes. And I'm fine knowing. I don't think an official really does much. As I can't change much. I'm sad cause it took me this long to know. Maybe if I was in my teens I might've tried.
Depends on your definition of valid. I doubt any self-diagnosis is legally binding. But it may have a sound basis in logic and/or fact. I think the more important question is if the self-diagnosis is accurate. According to my professional psychologist, mine was. If you need a professional diagnosis to convince others, then that might be another way to define valid.
Totally agree with this. I've just been reading all these comments saying it's not 'valid.' And they made me angry. All I could think was, 'define valid.' I believe valid is a very misleading word in this context. It just brings up so many other questions. Such as, 'valid to who?' I believe, as you say, a more appropriate question in this context is, is the diagnosis accurate.
A person with cancer still has cancer even if the doctor has never told that person that they have cancer. Doctors are called doctors in practice because they're always in the state of practice, and never at a Mastery level......... a diagnosis is a confirmation, confirmation is only needed when you are seeking to treat through the system, and by way of the insurance companies. ( which is the true reason why medications are controlled- it keeps you within the system) If you are autistic, and you can tell that you're autistic, you do not need another man to tell you what you already are.......... a person who is autistic will still be autistic with or without a doctor's approval.
Watching this and in tears. Age 50+, female, know I have ASD but can't get an official diagnosis. I don't really "need" it for financial reasons but just so I can have a name to this torment that has affected every aspect of my life. And yes, I feel greatly misunderstood and left behind. I just want to fit somewhere and know I'm not alone.
I hear you. I'm 67 and have recently realized that a.lot of the struggles that I have had in life, with relationships, hard to make friends, and feeling so different. I believe I have Asperger's but it would be reassuring to have a diagnosis
I have become aware that I am Autistic and also have ADD when I began working in reading recovery/tutoring at age 29. I was the clinician who could work with the more difficult children and begin to open our non-profit to working with kids who are on the spectrum. I was aware because I had to constantly do testing and intake for kids to place them in the program and I was later involved in education research. The qualities and characteristics of these conditions were constantly listed for me and after awhile it was difficult to ignore that they were like reading a list of my personality traits. I tried to seek a diagnosis three years ago and my life totally unraveled. I also suffer from severe PTSD from childhood emotional neglect, severe bullying, and later as an adult, multiple sexual traumas, homelessness, kidnapping, and more I don't want to keep listing. I have been offered diagnosis of disthymia (low-grade depression) when I masked completely, generalized anxiety, depression, major depression, obsessive-compulsive disorder, and then in 2018, bi-polar. No matter what I showed them of the 133 questionaire checklist of from Samantha Craft or my request to be evaluated, I was dismissed and treated with meds for depression and bi-polar that numbed me and made me unable to even participate in therapy. My therapist of 9 years believes me and understands, but she can't diagnose me. I have state healthcare because I can't hold down a job at 40 and I also have some debilitating undiagnosed chronic pain issues, but that also means I don't really have any say it what treatment or doctors I get. I have no power to say "no, that is not right" and when I did, I was belittled, medicated, hospitalized, and in 2018 pretty abused by emergency care providers in ambulances, ERs and by law enforcement. I experience severe trauma over and over again and eventually I was locked up for a psych ward for weeks until I agreed to take the Lithium and all the drugs they wanted me to take. I still wish to seek a diagnosis, but it feels so triggering and I feel like trying to get help can sometimes just cause more trauma. I live in Colorado, a few hours from where Elijah McClain was killed when law enforcement was called because he was dancing down the street at night listening to headphones. He is Autistic and tried to explain to officers, but he is Black and they ended up having the emergency care providers drug him with ketamine. He fell into a coma and never woke up. I was similarly drugged in the ER, lost three days and woke up in a psych ward. I appreciate your video (s) a lot as I try to decide how to proceed and what is best for me so that I can actually feel alive in this world that doesn't really accept me or believe me. Being wired "weird" is really tough but youtube videos from others with similar struggles is really helping me find acceptance inside myself.
Valid for me. I know more about it - and me - than anyone I've ever met. I was born in 1948. If I told you my history, you'd cry. Thanks for your great work.
Yeah same here, compared to my community. I'm a special educator and I'm autistic. I was finally able to get diagnosed but I had to go by self-id for many years and people (with no autism background) were extremely dismissive
So so many suffer a lot on this earth. Thich nhat hanh: out of mud (suffering) make Lotus flowers (tolerance love patience compassion deep understanding). You are rich of mud, i wish you grow such beautiful flowers in your soul . (Born 1955)
Peter. I had atough time too. Then people say you're not autistic even 5hough you have the diagnoses and would not mention without it. They say you always get the autism card out hen you only just got it. And your explaining that people are bullying you for being autistic and saying you're doing things wrong because of it when they interfere with you at the pub. I got barred because they got fed up with some drunk stalking me and threatening me with rape.
I have never been officially diagnosed but I don't see the point (for me) in doing so. With what I found out about myself I actually felt a bit of relief as it explains so many things.
@@wendychan6679 the reason why I had to know is because I needed to understand myself, the reason why I had to confirm it, was so I was permitted to say I have autism. 5hinking that neurotypicles are average intelligence and above is the biggest mistake I ever ad they use it against you, so do below a wage nonneurotypicle people who think they can use me as a diversion from their stupidity. But it just confirms what they are. Never mind them. It is very lonely. There are way too many humans in this world yet no-one available to talk sense locally. I like dogs and dog loving people. I get told, when I say I'm fed up with a certain person giving me more hassle since my diagnosis, you always play the autism card Caroline! I only had it three years, amd it was not me playing it it was them. They will always be prats but I must stay true to myself, these bullies hate me for that because they don't have the courage to be a real person. Also without a diagnosis, you can't get the help you need to get by in a human world which only caters for neurotypiclw people and everyone needs not only to survive but to live to their gillest potential. Ofcourse that is still not likely got most autistic people living in an area with no buses arriving and leaving when it says on the timetable. Perhaps you don't need a diagnosis. Autism affects some people for the better and others are in a bad way. Especially if they have asthma and other issues. We are not just one thing. The asthma in my case takes zll my energy away and starves my brain of oxygen, and worsens 5he ocd. I also have a disease that the cdc suspiciously pretends does not exist. There is a scientist froffessor who said they did not use one single Morgellon's sufferer in the Morgellon's test. They only used mental patients all of which had dellusions of parasitosis. The cdc said the fluff was from the carpet because to naked eye it could be. But under microscope it looks different. And dr randy wymore PhD said fbi examined the fibres and told him the material they're made of is not known to man. Also people with compromised immune system such as autistics are vulnerable to this limes related virus. Another reason to be diagnosed. And pancreatic cancer and gut issues are a symptom often found in autistic people. So we need to know our own body to look after it. Also, if only I had been diagnosed before I took my aliens. Because of the autism I was distracted by coughing and sniffing throwout the entire exam csusingbme to fail, even though I was told I was really bright at that subject. These days ztud3nts get a device for b.ocking out irritating background sound. nuancehear.com/contact-us/
I've just been reading all these comments saying it's not 'valid.' And they made me angry. All I could think was, 'define valid.' I believe valid is a very misleading word in this context. It just brings up so many other questions. Such as, 'valid to who?' I believe a more appropriate and useful question in this context is, is the diagnosis accurate.
I’m 37 and I recently scored a 41 on the AQ but I just don’t feel the need to go through the process of being formally diagnosed (A large part is because there’s a huge lack of expertise in my state with anyone with Adult ASD experience). I’m not in need of meds or am lacking anything in life. I just don’t see how a diagnosis can help or will change anything at this point... but that’s just me o_O
That makes sense, I definitely don’t think everyone needs it. I was just diagnosed by my therapist (25 M) and went through the process with a neuro psych last week because I know when I tell my family that most probably won’t think it’s a real thing/think it’s an excuse to be lazy or antisocial... I have lots of problems like I only work a summer job and bunch of other stuff so I feel like I need a lot of help
I've had multiple therapists recognize it on their own, with the last one saying 20 minutes into the first session "are you autistic?". That one was based on an interaction at the start of our first session where I couldn't tell if she was reaching for the clipboard with my "new patient" paperwork or reaching to shake my hand, and said exactly that. She initially thought that was just a tension breaking joke, then realized pretty quickly my near complete lack of a filter. On the plus side, now I know that most of what makes people say I'm funny are me asking legitimate questions. The questions just feel like "Seinfeld" style humor to most, apparently. But I agree about the lack of people to diagnose adults. I've been hunting for it actually, with no luck finding anything in my region.
Sounds like a familiar story... I'm now 37, hit about a 42 (about a year ago), and live in a state where issues like this aren't much of a thing. You're not the only one in a canoe on a river full of yachts. 😉
@@vtmegrad98 That (people thinking that you're funny when you weren't intending it to be funny) sounds so familiar! Growing up, I had what I thought was a bantering relationship with my cousin. She was quite funny, in an edgy kind of way. I enjoyed it for the most part. She'd be sassy at me, and I'd be sassy right back. Only, now that I know what autism can look like, and am sure she has it, I asked her about it. No, she wasn't being snarky or sarcastic or trying to annoy me by being picky about unimportant details, she was sincerely just trying to make sense of the world! I asked her, "So, what did you think of me, I was just randomly picking on you?" "Kind of. Sometimes you were nice, sometimes you were mean." 😖
Currently forced to be self diagnosed. I don't have the money to pay for an assessment via a private clinic, and the average waiting time when going through the national health care system is several years... IF they even let you go through one that is. When I got informed of this a month or so back I dropped my jaw. 10 years ago it was an average of 3-6months waiting time. Now it's years. In comparison, would I had the money? Average wait time is 2 weeks... What currently irks me the most though, whenever I'm in contact with my therapist at my local doctors office, is how she continuously brings up "you might not be autistic", while at the same time is uncomfortably (for me) IMPRESSED with my level of self awareness, understanding of myself and how I function as a person. She keeps repeating how great I am at these things, and that I should feel proud of myself. It's rare to be so knowledgeable, apparently. SO, why then do you keep telling me I might not be autistic? I've done the research, I've interviewed my parents about my childhood, I've spoken to others on the spectrum, I've taken multiple tests, I AM AUTISTIC. It doesn't feel great being stuck with this attitude of "you might not be" for how many years it is I'll have to wait for that assessment. I don't understand how that is supposed to do me any good? How that limbo way of thinking is going to enable me to help myself, or get help. Especially when what drove me to seek out help in the first place is that I realized I need it, if I want to have a decent chance at a decent life. Which wasn't that easy to come to terms with in the first place, took me almost a year actually, after accidentally stumbling upon an Aspie YT content creator that spoke about things that were dead on accurate on how things are for me. Sorry for the rant. Just super frustrated today about this particular matter.
I was misdiagnosed with Paranoid Schizophrenia when I was 16 and at the age of 19 I got an early retirement because my executive functions are so bad that I am not able to function with daily life, let alone any sort of work. Because the diagnosis was so obviously wrong (I have never had any psychotic symptoms) and the psychiatry was unwilling to listen, I have spent so many years researching mental health for myself in order to figure out what is "wrong" with me. For many years I never found anything that fit, and already having one misdiagnosis and knowing how horrible that can be, I did not want to get it wrong myself. I autumn 2018 I first discovered ADHD - specifically the inattentive type and how it might show in women. I was able to convince my mom that she likely has it too, and she got a diagnosis within a month. I feel confident that I have ADHD but a lot of things still didn't add up, and about a few months ago is when I finally discovered Autism and now my entire life makes sense. I've been able to piece together the puzzle of having Autism and ADHD, and having developed Complex PTSD, Depression and Generalized Anxiety from my experiences and the way my mind handles things. I can't get an official diagnosis both because I have already been in contact with the only doctor available, and he told me over the phone - without asking me any relevant questions himself - that I can't have ADHD because I'm tired a lot (obviously because of Depression, which is a common recurring diagnosis with ADHD/Autism) so needless to say I don't trust his judgment. Furthermore I would need to have the diagnosis of Paranoid Schizophrenia removed, which would mean they would take away my pension and I'm simply too much of a mess to have to go out and find a job. I am almost 30 and I have never had a job; I'm struggling just to do the dishes. I'm worrying about the legitimacy of self diagnosing as well, but the so called professionals don't seem to know what they are doing and at this point I trust my own judgment more. My mom also had a misdiagnosis and no medication ever helped her, but after I figured out she has ADHD and she got the proper meds she's had some improvement. The psychiatry never discovered her ADHD despite her having had frequent contact with them for over 30 years. Mental health professionals need a lot more education on ADHD and Autism.
The fact that you are trusting your own judgement more is brilliant! I absolutely agree with you about a lot of doctors; they don't seem to have the training that encompasses a good general basis. I haven't gone for an official diagnosis for this very purpose. Like Paul, I took an online test (I did mine with the Cambridge Research Centre into Asperger's and autism - which is a British one) then took an online course in Autism with FutureLearn, which was brilliant. And, I just kept watching loads of videos by Paul and other Aspies. If you don't mind the advice, just keep learning as much as you can from watching and reading. I found that it's not only been a huge eye-opener and affirmation of my condition but has also been a humungous help with the condition too, including gaining a lot more confidence. And a big relief at knowing what's wrong. All the very best. :)
@@DevonExplorer Yes, watching a lot of videos to hear from other people with ASD is really an amazing thing to be able to do. I believe it was Paul that said in a video that one way to also gauge if you might be on the spectrum is to be around other people on the spectrum, because feeling that you relate to the diagnosis is such a huge thing. I used to watch videos on Schizo and I could not see myself in any of it. With ASD it's absolutely overwhelming how many things I've learned stems from it and that's why I feel confident in saying that I definitely have ASD. It's so all-encompassing that it's in everything you do - even the way Paul speaks and his mannerisms immediately made me feel "holy, this guy has the same "aura" as me!" Though he is much better at speaking, I'm still very bad at it but trying and trying so I can make some better videos of my own. :)
You have to know you have been in the wrong hands as there already exist enough evidence to say that schizophrenia is the diametrical opposite spectrum of autism. In fact we are threatened by the business of psychiatry and psychology as they in general don't really have ANY clue about "non schyophrenic autism". In fact the word "autism" is already wrong as it was invented to describe the symptoms of schyzophrenia. It's so bad that it will not be accepted as standard many years from now as it is very cheap to get a medical diagnosis.
I am self diagnosed have been since I was 22, I am now 33 years old. I have never felt the need for a formal diagnosis. I used to always ask my parents when I was a child what is wrong with me and they never gave me answer because the doctors told them I didn’t tick another box’s to be diagnosed.
hey paul...im going through the process right now, i found out i was autistic watching videos like yours. basically my whole life flashed before my eyes, it was a total revelation. ive had an evaluation with my psychologist and she says that yes, it makes a whole lot of sense. years ago i was diagnosed with bipolar disorder and borderline, but i always felt it was wrong. my close friends would say no youre not bipolar. now that i know what the "problem" is, i feel so much better, i feel less of an alien, that there are others like me. thank you so much for your videos, they really help me understand what its all about. cheers!
Many of us don’t have a choice but to self-identify, unfortunately. For example, in the US, the tests cost thousands of dollars and insurance won’t cover it. At least from my research, no insurance plan does. Then there’s access to specialists, especially ones who are up to date and aware of the differences in which autism can present based on race, age, ethnicity, gender identity, etc. Intersectionality, basically. (Side note: the fact that we’re still gendering autistic traits -and ADHD traits, too- doesn’t help. It excludes many people.) I didn’t have that kind of access, where I come from, and my hope was that I could get diagnosed here in the US, but now money is the problem. I just wanted to add that.
My realization came when my daughter was diagnosed. It brought back some memories I had left to the past. In the light of everything I learned since her diagnosis, I realized I had a very stereotypical (a.k.a. from media) view of what autism is. I'm still learning.
Same my son hasn’t been officially diagnosed yet but ima let u guy judge this and tell me if I’m crazy my son just turned 2 he is my literal twin he always look grumpy always look like he’s got something on his mind very intelligent but he doesn’t interact or respond to his name I figured it was just my genes cause I was and still am in ways like that but I kid you not I did some research and it tore my heart out my chest learning the truth because I grew up always wanting to never wake up because I was so different I was so introverted that even the people I did convince to like would loose interest in me thinking it was my physical flaws my big head but skinny body being short having crooked teeth not knowing what was really going on so with me trying to fit in it made me stand out even more to where I had mental breakdowns from all the spankings I got cause in my mind I couldn’t control myself to stop my mom or dad from hurting me I physically couldn’t just be a normal kid to save my life literally your videos have changed my life I feel like a superhero now I always knew I was different honestly I thought autistic people were more kin to DS but I feel like where just outta the box thinkers
I was diagnosed and didn't believe it for years because I was lower support needs than most stereotypical media portrayals and don't flap my hands at all (I stim a lot, just not in that particular way). Frankly, I'm actually pretty Able-ist and really trying to stop thinking like that.
I self diagnosed a few weeks ago, thanks to the internet community, and I keep discovering more traits (I thought I didn't have...) every single day ! I guess I will get officially diagnosed when I'm ready, out of curiosity, mostly. But I don't need no neuro psych specialist to TELL ME what I KNOW. I guess those who need it are my friends. Sadly. But I don't expect any neuro typical brain to understand what we experience. This is hidden, mostly. A whole life experience only autistic people can relate to and validate. Others will just go like: you're normal, don't look back, you're great as you are, you might just identify to a label and get depressed for nothing... Wot ? What are they talking about ? What do they know about what it feels to realize you've been autistic for 56 years ? So yes, maybe I'll seek an official diagnosis just to shut some mouths and be left alone.
I'm currently 33, the only diagnosis I received through my life was Emotional Dysregulation Disorder (which I only found out in my late teens/early 20s because I mentioned to my mother that I suspected that I could have ADD, to which she replied "I'm not sure about ADD, but you were diagnosed with something called EDD", which led to me doing research it... which doesn't seem to be a very common diagnosis). As I dug deeper, I started reading about aspergers (and of course autism by extension), finding that I was noticing stuff that sounded a lot like me and issues I have. At some point, when I brought the possibility up to my mom, she told me that my brother told her the same thing (about me) several years earlier (I may have been anywhere around 10 at the time) after watching a documentary on it. I'm not sure how an actual diagnosis was never made considering the fact that the majority of my schooling, I was a special education student, and until I was 15, I saw a therapist every week, but due to the fact I was never officially diagnosed, I had a hard time out and out saying I was autistic out of sheer fact that it was a self-diagnosis. It actually wasn't until about this past year, finding out that toe walking was a pretty common thing for people on the spectrum (and considering I do that a lot, and have since I could walk... something my mom pointed out to doctors that went ignored by them when I was a kid) that I actually began to actually be comfortable saying that I am, or likely am on the spectrum, that piled with the results of the AQ test I took online, the way I relate to most aspies I meet online, and everything I knew before, the only thing i think holding me back from getting an actual diagnosis is that I'm not sure where to get started (I don't have a primary care doctor and going to see a doctor is an extremely rare thing for me)
Many of us here in the USA don't have access to an official diagnosis. For those whose insurance doesn't cover mental healthcare or who have no insurance at all, it can cost thousands of dollars out-of-pocket to get tested. Also, depending on where a person lives, they may have to travel long distances to find therapists who are competent in adult diagnosis.
Health insurance has been getting a little better since COVID lockdown. My job provided free therapy for several months and now my insurance covers it. I work for a bank though so maybe this is an exception
I'd like to point out that what is official somewhere isn't in other places. And in some contexts, self-diagnosis is the only option. For example there are many countries that are so far behind in term of psychology in general and ASD in particular that autism "experts" are so uneducated about autism. However they are the only one having the legitimacy to give "official diagnosis" for people to seek help and accommodations from the wokplace and government. I considered seeking an official diagnosis where I live but my therapist discouraged me strongly because not having my experience being validated by the "legit experts" because they don't know what high Functioning autism is or even look like especially in women, would do more harm to my anxiety and depression. And ironically psychologists (masters degree in psychology, official title of psychologist by the government, licensed to practice) aren't recognized legit for ASD diagnosis. They are for other DSM diagnosis but not ASD, where I live. So one would need to go to a specific centers run by psychiatrists who only know the extreme forms of autism, a psychiatrist would need to recommend you and file the proper document for the center to consider your application. So you would need your physician to refer you to a psychiatrist, then a psychiatrist to refer you to the center then the center to officially diagnose. When I asked my physician she said: "you don't have the profile" (so obviously she has no clue what Asperger in women is and what masking is, nor does she know me besides the appointments for my kids), then she said she didn't know any psychiatrist who knows about asd. Can you imagine the nightmare ??? So I seek a former diagnosis from a therapist outside my country. But there's no way I can get it to be "officialised" in my country, or even recognized. 🤯
Gee, I don't know. Do you need a doctor to tell you if you're gay? Do you need a doctor to tell you if you like rock music? It's disgusting that science thinks it has a right to say anything about behavior or psyche.
Thank you for this video. My boyfriend has ASD and I have never related to someone the way I relate to him. He is actually the one who first questioned if I had autism and he is my validation. Thank god for him and for you and this youtube channel
I would love to get an official diagnosis, unfortunately with a history of depression, from 20 years ago, and owing a vagina, everything just gets called anxiety with a pat on the head. Maybe I should join a group to see if I fit but that'll be a mark against me because it'll count as 'looking for symptoms to mimick'. Our system sucks.
I got diagnosed with CPTSD, depression, and some other things. Wildly anxious about trying to get a diagnosis because it feels I have a number of qualifications that would make it impossible.
I was with a personal development coach for years and I noticed during our last year, I kept telling her that when too much is happening around me, my brain shuts down and I can't verbally respond. I spoke about my brain feeling different a few times. I used to be teased and still am from others for not being spontaneous enough and needing routine to function as well as not speaking when around others. I get told I'm rude or weird for not engaging in conversations. Sometimes, it's because I don't feel comfortable to open up. Mostly, it's just because I really don't know how to have a conversation. I've never understood small talk. I can do "Hi! How are you? I am good, thanks." Then that's it. I honestly have no clue where to go from there... I am so glad to find this channel. So much resonates. Thank you.
I am 99% sure that I have Aspergers, and am trying to get a diagnosis from the doctors, but so far, they keep saying that I "seem normal" to them... It's frustrating, because I just want to understand why I'm so different to everyone else.
if you’re still looking for a formal diagnosis, i would recommend going straight to a clinical psychologist. most internal medicine doctors or everyday therapists don’t know enough about autism to diagnose it or even point you in the right direction. a clinical psychologist will definitely be able to tell you if something is up, especially if they are versed in diagnosing adults with ASD. best of luck!!
So… society is evil and I have been questioning quite a few disorders that can go hand In hand such as ADHD, OSDD and Autism. I would love to get answers but I have a strong distrust and fear of doctors. Plus the American healthcare system is crappy… this is very validating and scary at the same time. Thank you. I’ve masked my whole life and also had a terrible childhood and upbringing.
I went to counseling at age 67 for anxiety. I felt that I had autism traits...also INFJ. My counselor agreed that I most likely I am on the spectrum. She also stated that I seemed to be high functioning. That I had moved through life so far. That I had developed coping skills to be successful in many areas if my life. I completed College, Married, Raised children, Held employment. She also acknowledged how difficult and challenging my life journey must have been. She saw no value or purpose in getting a formal diagnosis at 67.
@Ithaca Thank you for sharing your experience. Im thinking, WHY would doctor say there’s no value in diagnosing autism, just because the person has managed to cope with it most of his/her life? Or why would a doctor hold back from diagnosing ANYTHING? For example, if you were to go to a medical doctor with an a sprained wrist, with the obvious accompanying symptoms, would they hesitate to diagnose a sprained wrist? (No!) and they might even send you to a physical therapist to make sure you heal properly and regain full use of your wrist. Maybe part of the problem is they don’t presently have a definitive test (like a blood test, for example). But many things are similarly difficult to diagnose, yet they hand out those diagnoses rather freely. I really am just guessing here (I don’t have full knowledge of the medical and psychiatric system) but I think there’s another reason doctors may not want to give a diagnosis of autism, and it’s not always out of concern for the patient. It may be they are protecting themselves from coming under scrutiny by their superiors, like those establishments which govern their licensing, etc. What are other reasons they wouldn’t give a diagnosis? (Maybe some other commenters have ideas...I’m sure there are other reasons.). But in my mind, that reason (due to age) is not valid. It should have been given anyway, almost like a Medal of Honor for the supreme effort it took for you (Ithaca) to hurdle the events of life in a neurotypical world successfully. Saying that a person is “successful” (by doing all those things of life, like college, working, raising children, etc.) is true, but it doesn’t take into account the extreme difficulties that were involved for one with even “high-functioning” autism to be so successful... especially for having done it all without even knowledge of the reason for those difficulties or specific support for them. Because I believe that a proper diagnosis could be of value even after a long period of being undiagnosed. Well, at least this doctor confirmed the autism, even while withholding a formal diagnosis. That’s a little more affirming than getting a “high-probability-of-autism” score on the various tests one could self-administer. Also formal diagnosis could help if there was a need for any medication, and there are probably other situations in which it would be useful to be formally diagnosed even late in life. It seems to be that the world is having a hard time keeping up with current knowledge. Thanks to Paul and others who are helping the autistic community.
I always knew i was not like most people, but I just ascribed that to having very high intelligence. But after I had a heart attack I fell into depression. That seemed to me to dramatically affect my concentration, and I began to wonder if it was just depression, partly because of the strange effects that showed up. My internist sent me to a shrink to get a prescription for depression and I asked the shrink for an evaluation. He didn't give me one, but he did give me part of the QB test and completely flunked it. I got the prescription for depression but it didn't help much, but then I got to studying the QB test and looking at youtube postings like this. I am currently being evaluated by someone else. I am sure the result will be interesting, but it doesn't really matter to me. What does matter is that QB test result because it strongly related some of my problems at work to autistic patterns. My first depression med didn't do much, but my second one, which is also used to treat ADHD, definitely helps though I am still on a low dosage at this point. I expect that will go up. I had taken this drug for a while and then did the classic response of getting off it because i felt better, then I fell back into severe depression, though not as deep as before. It's a trip. As long as I master my new vocation I will be happy however I get classified. Being classified is just someone else's opinion, and they will never know me quite as well as I will.
Probably nothing you can do retroactively. In the future though you could ask for reasonable accommodations. Maybe more independent/solitary work or excused from particularly social situations.
I haven’t done it because I haven’t personally needed to. Plus, I don’t feel mentally prepared for going through the medical system again after 20+ years of fighting to find a medical professional who would confirm my suspected endometriosis. And the only way to know for sure is investigative surgery for that. So I am definitely already in the mindset of if and when I need it, I will ask to have it investigated. Last week I had a call with a recruiter who had sent me for an interview which was the first one in my life I decided not to mask for. Even she noticed. So now it’s me, my family, and my ex who I was with for over 10 years AND someone in my professional life who have noticed it. And the more often this happens, the less often I feel I need a professional diagnosis, because I don’t need medical support, just the understanding of the people close to me and in my line of work. I still feel guilt for “aspergersing wrong” though.
I have “friends” that think now I have a formal diagnosis that I need therapy to be “normal” their first question was ‘so what are you going to do about it, are you going to a therapist?’ I’m 52,just diagnosed and first self diagnosed at first through a hundred plus hours of research. I told them there is no cure, just strategies, they say I’m just using it as an excuse especially when it comes to meltdowns. They won’t want or read the information I provided. A great book is illustrated glimpses of Aspergers, in iBooks written for family, friends and workplaces, very short but very succinct
Yeah, I am in a similar boat. I want a diagnosis to valid my experience, stop them bullying me and I've got people flashing strobes at me and think it's funny. And also to get small things sorted in work places. I don't need therapy for being ASD though some tips always help. And I walk away from people when I am angry. I go away and cool down or to recharge. Any relationship, work colleague etc should have a bit of give and take with you. We all need systems to feel comfortable.
I was accidentally diagnosed (not through official tests but a psychiatric told me after assessing my childhood history) and I didn't believe it until I did researches on my own.
Self diagnosis is absolutely valid. Many seek out diagnosis and are misdiagnosed because the assessor is ignorant. Others dont have the 2,000$ that are required for a professional evaluation. If you are able to get a diagnosis it is still often not acknowledged as a disability and there is not an abundance of assistance for adults on the spectrum so a certification on paper is often not even beneficial when you do secure it. You dont need outside authorizations to certify the truth.
Yes or if your face doesn’t fit they may even spitefully misdiagnose you that’s just my opinion anyway (as they work for the government most of them anyway )
so true. They only know what they are told by you and a little of how you act around them which will normally be different anyways. Also, because you yourself don't know exactly what they need to know, you can unintentionally not tell them crucial things. This is also why i do believe self-diagnoses is rough, because often we miss things about ourselves that we never second guess because its so natural or you don't think about it in tandem with diagnoses.
It’s absolutely 100% NOT valid. You do not know more than someone who went to school and trained for 8 or more years. Especially if you are getting your information from TikTok. Sorry to disappoint you, but you’re completely wrong.
@@ascendednightingale2456 No one who is researching autism is going off info from just tiktok. We're researching it hard and it's a thoughtful process. Not just taking a test, relating to a few traits, and calling ourselves autistic. If you read through comments on videos like this, you'll see many adults, especially women, who get misdiagnosed or dismissed by doctors.
Yes and no- I know I have autism (I really really think I do anyway- after years of research) and being told “somethings wrong” or I’m “different” my whole life this really explains it. I tried to seek a diagnosis, but they won’t evaluate me because I’m a female, and because I’m “high-functioning” or basically because I see a doctor for 15 minutes and he thinks I look fine, nothing is wrong and diagnosed me with a general developmental delay instead. Can I start telling my friends I’m on the spectrum? Or a better question is SHOULD I start telling them that? Do we know ourselves better than doctors think they know us? It all depends.
I have on my medical records a psychiatrist say that because I could make eye contact and I could communicate using several communication skills that I was not Autistic. Again, around a 20 minute appointment that I was talking to her about with other things. Like to me it was insulting. They didn't look through any evidence I had and it reads of ignorance and stereotyping. It took me like 19 years to get my eye contact game up and I still can't get on top of it. Though from watching videos I have learned some tips.
Also, I find reading between the lines so hard, I can tell at times when people are lying but not why, I have sensory issues, I often miss sarcasm, miss jokes, I come off as being rude when I joke at times, this is due to forgetting to have my face set the right way, I find it hard to deal with people's egos and I crave order. And that is just some of the things.
I just had to say, this was really helpful to me. Even the moments when you thought you weren't doing a good job. First of all, you did a fantastic job. Your difficult moments were actually further validation to me of my own self diagnosis because I can easily imagine myself doing the exact same thing. And your comments about finding validation through others in the community were very helpful. I find that validation through watching videos like these and participating in the comments section. I actually feel much more at peace now in saying with confidence that I am self diagnosed on the autistic spectrum. Though I might seek official diagnosis someday, too, because it does significantly effect my life. Anyway, I wanted to say thank you for this video. It really did help me.
Self dx and absolutely certain of it. I simply say I was recently diagnosed. Talked to my psychiatrist and we agreed. At my age of 65 the screening wouldn’t make any difference. She agrees that I’m right and I KNOW I’m right. I don’t require outside validation.
Still waiting for my evaluation to be scheduled. Been waiting about 18 months so far. It’s sucks in the US. 2-3 year wait periods and a few thousand dollars if you’re an adult.
People have told me my whole life that I am on the spectrum and it felt really hurtful to hear. It wasn’t till I started working with autistic kids that I realized I may be one of them and boy I tell ya, it was kind of a wake up call
Yeah, my kids are on the spectrum, and my initial reaction was "No! They aren't Autistic! How can they be?They are just like me!" XD They have a diagnosis, I have CPTSD, I guess it easy when you have one diagnosis to ignore another possible coexisting one.. to be fair, I didn't expect it either.
The way I see it - everyone is on the Autistic Spectrum ... Everyone (to some degree). It's just some of us don't want to get off :-). LONGER VERSION I embrace the insight it (being Asperger's) gives me based on the continual need to model, frame and interpret actions of others I interact with, or information I read. Exhausting (hence more introvert which gets misinterpreted as extrovert during brain dump mode) but liberating when you meet friend you can tick with. Very few words exchanged and yet beautifully profound deep conversation - effortless and almost indecipherable to anyone who cannot tune in. What benefits? Well people you get to know cluster in behaviour groups and generally revert to type. Sure they have individual nuances but mostly their behaviour can be predicted - I can recall events in their lives better then that can. There is a danger when one meets new people to box them to early - but mostly it works - then look for the nuances and that gives a deeper insight into what they might want from a relationship with you (ie friendship, love, trust, a user, manipulation, hate speech, abuse / score points off you, collaboration, fraud (financial and intellectual), ...). I guess we all need some reassurance of contact with our own kind. The models I have made over past 50 years predict how lonely an Autist is likely to be - unless they can learn to model, mask and mirror NT behaviour and find some "me time" to be themselves - as I said unless you find someone with compatible attributes then this happens alone. just my experience - yours may vary. Just how much "me time" you get v what you need - depends on your financial / support resources. Indulge yourself and see where it gets you. Being what others want all of the time is just torture - so don't let yourself go there.
From what I gather, the diagnosis involves testimony from family & outsiders besides in person demonstration. At 72, I don’t have access to parents & sibling for a childhood assessment. I don’t require an adult assessment at my age having survived the journey. If anything, it helps others who suffer from my social interactions to understand. In such a case I just would say I live with symptomatic autism, its up to them to resolve the pain I cause. My journey had been "scorched earth" non stop. I keep waiting to be locked up. I know for certainty instinctively I was born with level 3 autistic, like how did I ever get through undetected? My mother knew something was wrong but never sought help, for some fear, I guess. But it was her & my sisters favorite subject to describe my strange and distressful childhood. LOL.
I discovered mine right after I finished high school. I diagnosed myself I looked up the symptoms and I have all of it. It doesn't bother me to be different
In the time since I posted here last, I’ve actively sought a diagnosis, but hit a wall with my insurance company, as I can’t justify the expense of a diagnosis, particularly at my advanced age.
An online test was enough for me. My son’s formal diagnosis is the only reason I began to wonder and did an online test. It’s been eye opening for me. I don’t need a formal diagnosis.
If you’re able, a formal diagnosis is totally worth it because it will test for your personal strengths. For example I learned I have a verbal strength.
It was made clear to me. So clearly. I agree, C H R I S T Y. I am 65, but I still see a value to meeting others and knowing what is the same about them. I suspect that I have already gravitated to friends on the spectrum.
I've done quite a few online tests to ensure that I'm not wasting time but definitely feel that my results warrant me making an appointment to see my doctor to come armed with a fair amount of info and getting a proper referral to a specialist. I just don't want to make a mistake but the other part of me in my head is looking and thinking 'Yep.. This sounds like us so get that appointment sorted soon, even if this pandemic is going on!''
Something I've been thinking about allot lately is that any formal diagnosis MUST be done under the banner of deficits... One could be 100% Autistic (or any other DSM disorder for that matter!) but without the presents of deficits you officially can not be diagnosed... it's the way the mental health industry defines all "disorders" as, well, disorders! Which leaves an ENORMOUS gap (especially for those of us old enough to have missed being diagnosed as Aspergers) for those who can "cope" as falling short of the diagnostic criteria... which is to say that by definition many true autistics most likely fall outside these official criteria. So the only real option left for some to feel included is self diagnosis!
I don't CHOOSE not to get an official diagnosis, it's just too expensive and I can't afford it. The reason I WANT an official diagnosis is so that I can ask for specific help in my daily life. I'm entirely confident in my own assessment of myself as being autistic. It's other people who seem to require me to have proof of what I already know.
After my mother refused point blank to accept my autism diagnosis, my sister-in-law, who is a mental health nurse, with kids, sat down with my mother (this was after she'd known me a while and had seen me have a meltdown), and said, "Peter is as classic a case of what used to be called Asperger's Autism as you'll meet. Right down to the quirks. And anybody who knows anything about autism will tell you that in five minutes." She told me that she works with a psychiatrist who is autistic, too. I don't know whether she'd reached that conclusion herself, or whether she checked with colleagues, but it has made life a lot easier.
If your goal in getting an official diagnosis is to be "accepted" by others for who you are and to have your struggle validated by them, then you are seeking diagnosis for the wrong reasons. NTs often have an instinctive aversion to people on the spectrum. This can result in a situation where subconsciously they'd rather blame the autistic person for that discomfort. Hence, Autism as an idea, an experience, a personal reality, is frequently rejected and denied by others around us. Having the stamp of officialdom will not make those who reject you suddenly change their minds.
Here's my story as a fellow Melbournian. Last year my partner who is very much into neural science and psychology helped me look into my own mental health and pushed me towards self examining. I began looking into autism as a special interest along with comorbidities that others in the community experienced. Whilst technical data heavy articles were useful, it was often channels such as yours that gave me the most insight. I would be able to recognise everything from shared experiences to subtle nuances in body language that just felt incredibly relatable. I would hear people say that they felt like an alien who just didn't seem to be a part of the world around them and relate at a profound level. I soon found connections to my physical health that had ties to autism such as bone density issues, hyper mobility and dyspraxia. Anxiety and shut downs suddenly had an explanation, I discovered that I had been experiencing autistic burnout throughout my whole life next knowing why. Because I have alexithymia, I wouldn't realise that anxiety attacks were not just stress or frustration but had a label I wasn't using. I learned that what I thought were headaches were actually migraines caused by sensory overload. Once I had a solid grip on all of this I effectively left the autistic closet and told my family and friends as well as work. In very rapid succession. In the case of my family, my sister already more or less knew but didn't know how to broach the subject. My parents had little knowledge of the autistic community beyond knowing yes there is an eccentric side to the family. Whilst it hasn't fixed every issue in the family it certainly has given some level of explanation and context as to why I am the way I am. It explained past behaviours and made it clear how some expectations of me simply weren't realistic based on who I am. My boss said he more or less sussed it out from the interview, knew I was very switched on and intelligent when he hired me and has neural diverse traits himself. Friends have all been supportive some sort of knew, some are autistic themselves and not a single person has made an issue of it. For formal testing no I don't need a Doctor to validate what I already know. I have supportive people around me and I can't imagine anything more taxing on me emotionally then having to unpack 4 decades of pain and suffering on a trained specialist.
i personally see autism as a mental/medical condition like any other. i think without the validity of a diagnosis, it will always be called into question. if you have to be diagnosed with borderline, schizophrenia, ADHD, or any other condition, why is autism any different? my view is, if clinical psychologists cant diagnose themselves, then why can people without even a degree in psychology do it? just my two cents. and also to be clear, there’s a difference between saying “i think i am autistic” and “i know i have autism and no professional can tell me otherwise”. the former makes sense to me (as it is a suspicion not fact, and usually predates diagnosis) and the latter just doesn’t make sense to me. not to down anyone who self diagnosed, just my thoughts
We're intelligent enough to diagnose ourselves through doing research, but NT'S often have to have a professional opinion and won't accept it any other way, so I got a formal diagnosis after diagnosing myself. The doctor I saw was really mean, though. I won't go into how, but it was a horrible experience. 😫 I got the letter, but I regret that I had to go through that.
It’s so hard in our area to find someone who can make an official diagnosis! Most are focused on children. Is there a us national list of places that can test for adult autism, even online video meetings for places that are long distance.
I took a bunch of tests including the RAADS one and got a 166.. I told my friend about it and she was basically like... Yeah we know lol. Like I was the last person to know. A whole life of looking at the ground while I talk to people and not being physically affectionate.. hating weird textures..smells.. having meltdowns at jobs.. shutting down.. walking out.. there were clues. I don't really need a formal diagnosis. Its just something im accepting at this point and trying to work with. Basically the same thing I've been trying to work with my whole life.. i just know why it happens now. Im 43. I don't think i can suddenly change anything now... I wish I would have known it earlier in life.. I probably wouldn't have ended up homeless a couple times. I wouldn't have had so much depression going Wtf is wrong with me.. unfortunately they just didn't really check for that in the 80s. I was different but not different enough i guess. Its been hard. Life has not been fun.
What I have found now at 61 and really digging into what I first discovered about 20 years ago, I am on the Autism spectrum. I now know I am highly functioning and I do have bad days. I realize so many people who are in my life, especially those "kids" who adopted me as their mom, are autistic. It is like I have always been a magnet for those in the autism spectrum, probably simply because I accepted then as they are, always have. I do believe I am discovering that I need to shift my work and career to supporting our young adults more.
I thought I was autistic for a long time but I was in my 20s and had the energy to cope with an NT workplace. As I got into my 30s I no longer had that energy so got a diagnosis (it took me 18 months in the UK) so that my workplace had to make changes to my working environment. My mum thinks she is also on the spectrum but is retired and never got a diagnosis, and now doesn’t think there’s any point as it won’t change any aspect of her life. I respect her self-diagnosis and everyone else’s.
@@superyan4100 I’m allowed to start and finish work an hour earlier so I get a quiet hour in the morning. I can listen to music as long as it doesn’t distract others. If the office gets too intense I can flexi 15 minutes and go outside for a walk around the block.
I can't trust my own evaluation. I'm struggling with other health issues. Too many. I'm 56. I'm afraid I'm disappearing from the world. Can a diagnosis change that?
I've heard my friend's neighbor's kid that acts like I did when I was a kid is suspected of being on the spectrum. Then after a few weeks of looking through symptoms, I went on a trip with my friend and his autistic stepson. I looked through a lot of your videos, others' videos, and different pages. Everything made sense after watching your videos and getting a near perfect score on the online test twice. I'm not getting diagnosed by a Dr to find out what I already know now thanks to you. Thanks and have a good day.
I’m so appreciative of Paul - I am gaining understanding w. myself, my family members, and my many, many artistic & nerdy friends. > For far too long we were treated as kids w. behavioral problems, or mental disorders, We were consistently punished , mis diagnosed & medicated ( doped up ) .. > To know your self / is a big game changer, And of course, being accepted is totally heaven !! 👍🏼🦉🧸🧡😊👀
After everything I've been through, even if there's a chance a doctor could tell me I'm neurotypical, it's still easier to say I'm autistic than to say I have *"significant autistic traits". As it stands I have no reason to pay hundreds to some guy to tell me what I already know.
I think the thing a lot of people are missing, maybe because in general we tend to be more trusting, is that people can lie about being diagnosed, and people can be misdiagnosed. So all the things people are concerned about--that self-diagnosed people could misrepresent us, or they might take up space or resources that should go to us, or whatever it might be (?)--would persist even if we could somehow get rid of self-diagnosis. Which we shouldn't. We don't get a bunch of free money, we don't get prestige, in general we don't get much of anything that would unfairly benefit a neurotypical person pretending to be autistic. The only thing I see being accomplished by people's demand for documentation is that autistic people are being harmed and excluded Anyway lol. Totally agree with you
I appreciate your take on this - hearing that the community is more focused on shared experiences than a (likely NT) professional’s opinion is helpful. I guess it’s kind of like my eating disorder support groups - we just support each other, not ask if you *really* have issues with food (though non-ED folks have no problem grilling you on it). I’ve strongly suspected Aspergers since around 2010, thinking “wow, besides the fact that I’m not male, this is exactly how my brain works,” when I started poking around different sites, and that was *before* I learned about masking, which can actually be a hindrance to diagnosis - unless I push the issue with psychiatrists/psychologists (none of whom have been well-versed in ASD), my concerns are dismissed. I guess THAT is why I am considering a formal dx now - I want someone that knows about Autism to listen to me and be like “yeah, sounds legit” since it’s been explained away by other things. I have already been diagnosed with OCD, ARFID (eating disorder often associated with ASD), sensory processing disorder, anxiety/depression, complex PTSD and…a few other things I can’t think of but that are often comorbid with ASD. I’m also interested in doing an IQ test, and being evaluated for dyscalculia, which is another suspected-but-not-tested diagnosis from a tutor that would explain so many of my difficulties. It more curiosity though - I’m already on disability for a physical illness, and to fill my days volunteer at church doing stuff that totally fits my skill set.
I have never shared this with anyone but I feel the time is right. I was bullied a lot when I was younger and as I grew up I was very vulnerable which lead to me being groomed in early adulthood. That with a lot of other trauma I belive makes it hard for me to self diagnose. Equally if I got a diagnosis what would that achieve. For now I want me to be me and understand what that is before seeking a diagnosis. My mental health isn't that bad I have a stable job as a nurse which I love. A diagnosis or not would explain wether my experiences with childhood trauma cause my behaviour or made me more suspetable to it. I am different and for what ever reson that's okay. I'm also dyslexic so that might not make alot of sense 😂
I'm almost numb hearing about how many people are autism or Asperger's and were not diagnosed. I feel for a better word -sad- knowing there are many people that self-medicated or played in a role in order to deal with issues that are really hard to explain to other people I still don't understand what people are saying about autism I just know it makes me feel familiar and that scares the hell out of me. It scares me thinking; did I ignore the signs with certain relatives and was a little too condemning? Where we just blaming things on one thing when it was a whole picture that needed to be examined? Also learning people have been diagnosed with autism seems to open up a big examining world to them which probably isn't easy. I hope everyone just stops arguing about everything about who's right and who's wrong Etc on the internet and just begin to teach like you do I feel there are certain people that are going to be against anything anybody does and I hope everybody that posts about their Autism and Asperger's has a media director to go through and get the trolls out. Good morning I just had a cup of coffee
For me.. I feel that there's no benefit for me to get an official diagnosis, personally speaking. In fact I'm somewhat worried about potential implications of such a thing. I also feel that there's no reason I need to seek out that external validation of what I've concluded is true. In a risk to reward sense, it isn't favorable to do so for me.
My first inpatient stay, the hospital noticed several autistic traits. After taking an official 479 question test, they said that I most likely have high-functioning autism. Now, I scored 43 out of 50 on the AQ test. My therapist says that based on what me and my mother have told her, she thinks that it’s autism. Even my mother, a licensed clinical social worker who works with people on the spectrum, she believes that it’s likely I have autism. Would it still be politically correct to say that I meet all the DSM-5 criteria, scored 43 on the AQ test, and scored high on a hospital test that I most likely have autism?
I do not like self-diagnosis and did not self-diagnose myself for several reasons. First, I have latched onto various diagnoses before as an explanation, but they turned out not to fit. Secondly, I wanted to have that absolute certainty for myself, and to be recognised by others. Thirdly, I find that many people in the online autistic community in particular are self-diagnosed while speaking for and over actual autistic people. I know how difficult it is to go through the system and get a diagnosis, but I think it's important to do it if at all possible.
I would love to get an official diagnosis just so that my family can't say I'm crazy anymore, and sadly I slowly belive it. But I'm very dependent to the point where I can't even talk to others one on one anymore I completely silence or panic, I always need company by a family member otherwise I'm unable to be out in the public. I'm even unable to talk to my doctor I know since my earliest childhood properly without panic. Until a few years I actually masked heavily at least until I graduated school, now I'm home and no need to mask anymore and since then my family thinks I'm crazy because of my behavior I always hide. I even can remember my childhood therapist talking about me being autistic but no one ever tried to diagnose me because I was a 6-7 year girl. I seriously don't know what to do anymore or to get even help without panic 😔
Another great vid Paul. I'm not sure if this would have been relevant but you made no mention of one drawback of a piece of paper diagnosis Which is mandatory disclosure. For instance here in the UK if you have driving license & get diagnosed with autism (&/or ADHD) it's law to inform the DVLA (who issue licenses). They may then ask you to an assessment to see if you'll still be allowed to drive. That is more testing. Personally I feel that's discriminatory. I'm self assessed ASD + ADHD I've held a license (&been driving safely) 30 yrs. I passed 1st time. I met the same criteria as anyone (NT) had too. If they want a more stringent test give it to everyone. Sorry ranting. Just trying to illustrate there can be negative consequences to an official assessment for ASD/ADHD. I'll not be seeking one myself unless it becomes absolutely necessary for some reason, such as access to ADHD meds.
I was officially diagnosed with Aspergers as a sophomore in Highschool, but as an adult I have no proof and cannot get it from any school I went to because they no longer keep those records, I graduated Highschool in 2011 so I understand why they wouldn’t keep the records
In my case professional diagnosis put me in stranger place than before. Now I'm completely puzzled. After self diagnosed I had feelings that AS is exactly me but also it's maybe just my point of view, maybe it's like cheating. I thought professional look will be more objective. It was very expensive. I was waiting couple years to get it. Results are.. I have AS features, but.. They can't agree (whole team of doc) because results in part of emotional intelligence are very high, even much higher than for NT. So I asked to explain diagnosis. So it means Im not on spectrum? And what it is in my case? They said it's still I have a lot from it.. so I'm kinda autistic.. But they will not write it on paper because I'm not completely fit in. So I paid a lot to have no other information that I had before. Because of course I'm interested in people behavior and feelings a lot from when I remember. I always wanted to know how and why people react like they do.. So I was studying this as much as possible. I can say whole my life (38y). It's kinda my special interest. I think if you don't need this information on paper, then better to trust yourself and just work on things that are hard, not paying a lot to have label.. 🤔 Of course it's just my point of view. 😉
Has anyone else having trouble getting trauma counsellors work with you because they treat people with ASD different than neurotypicals? I have had a lot of that. Its is very stressful to be knocked back half a dozen times like that as if my trauma and experiences are not valid. I human for crying out loud.
Honestly the thought of a Neural typical person diagnosing me sounds pretty awful. Its kind of like you want the person diagnosing you to know and identify that side of you because its something they themselves have lived through. Just like how alcoholics often support one another and are ideally suited to it because they''ve been in the same place. I especially dislike the idea of neural diversity being viewed as something to be treated and removed.
A psychiatrist said I may be ASD 20 years ago. Just now actually accepting I am. I don’t even know if that counts as diagnosis, but my doctor seems to consider it valid. He may be a quack though.
Thank you for this discussion. I have gone through so much in an effort to deal with my “mental health,” with its myriad of diagnoses (depression, anxiety, bipolar II, etc.), where none of those boxes stuck/fit/helped. A few years ago, I started researching “mental health issues,” and gained a fair amount of information. Truth be known, nothing fit the “deep inside me” until I started learning about the autism spectrum. Like so many others, I had the false notion that autism was limited to those who didn’t fit - e.g., in early childhood, mostly characterized by the non-responsiveness seen in the most extreme cases. Was I wrong in all these things! So . . . Autism spectrum hit all of me, and I have seriously been masking all my life. When masking failed, I feel into suicidal ideation and several attempts. I am extremely relieved to find a description of “me” that fits 80% of the signs. I say relieved because I realize now (at 73 years of age) that I fit in society differently, and am, in all likelihood, on the spectrum. It is a freeing thought, because I now know that I am not “sick,” but just beautifully different. And that’s OK.
I am a big believer in getting a professional and official diagnosis; however I live in a culture in which criticism of expertise is also valued and the medical and psychiatric community is always ever under attack for the elitism of their expertise and/or the falseness of ostensible expertise. AND those communities also engage in all sorts of misinterpretations and worse themselves (witness Autism Speaks). I see both sides on this issue, but I personally believe in getting diagnosed, at the very least psychologically evaluated. It is like getting a medical checkup in my view.
m hampton, yes, I agree. There are many many complex factors that for into an autism diagnosis and it takes a medical diagnosis. I absolutely acknowledge that the diagnosis process can be really difficult, the answer is not an enormous amount self diagnosis. The answer is increasing access to medical diagnosis.
If someone thinks they are Autistic I think its their right to remain undiagnosed. However, for obtaining some benefits a diagnosis on paper is required and my receiving assistance from a Disability Employment officer was dependent on it and it was well worth it.
I'm in a diagnosis limbo, I did go through an official neuro-psychiatric evaluation last summer, that focused on adhd and autism. However, while they did confirm that have features of both diagnoses they did not think they could draw a conclusion based on that investigation. So I may or may not have autism. Here is my thoughts on self-diagnosis: In many countries it is hard to get an official diagnosis, for instance, the bureaucracy can be to complicated so that you might not know how to even get an appointment for an evaluation. It can also be problematic to get an diagnosis as an adult because you might have learned to unconsciously mask some of the symptoms and therefore makes it harder for an investigator to come to a conclusion. While having an official diagonsis will grant you access to medication and therapy, which you might need to function, it can hinder you as well. For instance, here in Sweden, where I live, many employers avoid hiring people with a neuro-psychiatric diagnosis if they can. Ofcourse, it is illegal to cite such a diagnosis as a cause of dismissal except for some special occupations, such as military or police, but it is easy for an employer to find some other issue to use as a cause instead. When I told my intentions of seeking a diagnosis to my relatives most of them thought that it was a good thing, because they all thought that I have something like this. So socially my "self diagnosis" is mostly accepted by my closest peers at least. Since I have been able to go through engineering school without an official diagnosis I have decided that I will try focus on self-help and try to find ways of dealing with my problems my self and hopefully I can mask my way through job-interviews, but these options are not possible for every one and I'm glad that I can use them.
So I'm wondering if this could be used as an autistic daignosis tool : it says that Autistic Self Daignosis etc premieres in 33 hours and it shows that there are 5 waiting ?
I am 48; 37 in the AQ test. I did a research, watched a lot of videos, read many articles, and see that I have many signs of Asperger's (and PIT) in a severe form. However, there are many typical Asperger signs that I don't have. So, the official diagnosis is very interesting for me, that's why I am seeking it. Universe, who am I??? :-)
I had a similar experience. A work friend asked me if I had Aspergers when I was around 44. Fast forward to 2 weeks ago, I was diagnosed with ASD-1 at age 49. The day he asked me, I started researching ASD/Aspergers... I became a bit obsessed learning everything I could about it. Living in Canada, it is difficult to find therapists that specialize in ASD/ADHD. I scored 41 on the AQ test. All my life I have felt like an alien living on earth. I grew up in a family of tradesmen (Pipefitters/Welder/Millwright) and I didn't feel like I belonged. Learning about Aspergers/ASD made me look back on a lifetime of choices, which I used to beat myself up over... now I have insight into those choices and I beat myself up a little bit less. I felt like a bit of an imposter saying I was on the spectrum up until 2 weeks ago... but I think I was as sure about me having Aspergers as I am about being a man. It may be a long journey to get the diagnosis, it may bring up some painful memories (or in my case, not so much memories... more like beating myself up for something I said 20 years ago and I can't forget it), but in the end it will be worth it to have someone say: Yes! Your operating system is different, but different is ok... you no longer have to drive blindfolded.
I have been following your videos since I was diagnosed over 10 years ago. Have you ever considered letting go of the term Aspergers? When I learned the history behind the term, I was shocked and stopped using it. I am sure you have heard the history behind it, so was just curious your thoughts on it....
Hi. I took the Autism Canada screening tool. It reads that I am pretty much Autistic. I don't think I want an official unless I absolutely need it as the process costs 4000 here. I am OK with self - diagnosis . Thanks for your videos.
I’m afraid to go try and get diagnosed because I’m a 49 yr old woman and I feel I won’t be believed or that they won’t even entertain the idea to test me. I’ll feel deflated. I would like a the diagnosis on one level but then I don’t care because I just know I am and my husband agreed. He smiled and said “it all makes sense” and I really appreciate that. Thank you for this wonderful video. ❤
🙋♂️ I feel like it’s gonna be taken in the wrong way but I’m observing a pattern and I don’t quite know what it is I’m looking at yet: 1) Is there any truth to “weaponized autism” through virtue signaling? 2) How varied is the communication style of people with ASD? Seems like there exist some kind of lost in translation going on with people sometimes.
