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Autism Self Diagnosis & Gatekeeping... Autism & Society:
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- Опубликовано: 17 авг 2024
- Autism changes everything when it's discovered in adulthood. The realisation that one is autistic puts perspective on a life that may have been confusing and frustrating up to that point. Diagnosis can be a long road though. Thankfully there's a community full of autistic adults ready to help - except for a few...
#ActuallyAutistic #AllAutistics #AskingAutistics
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Thank you very much for this video. I am 57 and have only recently discovered that I am almost certainly autistic. My life finally makes sense. The more I learn, the more I realize how profoundly my autism has affected my life. I feel as if I have been accepted by the autistic community and have only seen a little bit of the animosity that you describe. Thanks for helping to make sure that people like me are accepted into the community.
Wow! Snap! I'm also 57 and making the same discovery. I've had difficulties all my life which could never be explained by my blindness. I wish you all the very best in your journey.
Being female & not dx till age 48 this attitude is maddening! Most adults have done so much research that the dx is usually a foregone conclusion - IF they're ever lucky enough to actually be able to access an assessment. Thank you for discussing this. 💜
The struggle for a diagnosis is very real. I live in the US. As a 40 year old professionals who would diagnose me are very hard to find. I have struggled with keeping employment my whole adult life. I live day to day, which leaves my chances of obtaining a diagnosis, and support is nearly 0. It makes the realization disheartening and makes me understand why some could succumb to the anger.
As always a balanced video. Totally agree that we should welcome those who are self identified.
I did a lot of reading and research in determining that I’m autistic. The real “light bulb moment” however, came when I started engaging with the autistic community online. I talked with other autistics about my experiences and realized almost immediately that I’d found my people.
I’m in the USA and a diagnosis is pretty much priced out as an option, so being accepted as self-identified has helped me a lot. Fortunately, the groups I frequent do not allow the kind of malcontents you describe. I could just as easily been turned away and still feel uncertain and in the dark.
A great video, as always!
Thanks again for reassuring and accepting self diagnosed autistics. There are still countries in the EU where it is really hard to get a diagnosis. You help us a lot with your videos.
Very insightful and thorough, and I will use the term self-identified, it's more precise than diagnosed anyway. Thank you!!
Yes!!
Self identifier and awaiting diagnosis at 58 and on line meet ups are a life line right now I need more contact with other people on the spectrum. Thanks for the support you encourage
Self identified. I like that. I am not capable of diagnosing myself, but I do identify with autism. Of course there are valid reasons why I haven't sought a diagnosis for autism before now. But life is changing, again, and those reasons no longer apply to my life.
My life is exactly as described in this video. I only more recently had a friend tell me they thought I was on the spectrum. Due to the stigma I was offended. More recently I was curious and quite possibly down a rabbit hole and bumped into a RUclips video about being autistic. I realized I related to video and now self identify as autistic. I am thankful for this as it helps me understand many aspects of my life.
For years since I've considered myself self-diagnosed, I've tried to think why I should seek a formal diagnosis. As an American, I just can't see a reason.
Also there seems to be something fundamentally wrong with the idea that one should only consider oneself autistic only after an authority pronounces them so after a flawed examination that the examinee has little to no power to contest.
We can see just how flawed the process is by the advice given to those seeking a diagnosis. One is told to do the research first. Why? Isn't it so we can use that knowledge to influence the result?
I remember when I got my ADHD diagnosis. The first doctor I saw refused to believe I could be an ADHDer because I wasn't diagnosed as a child. How can we trust an organization that frequently (after all, Stories like this are common) gives someone that ignorant the power to grant or deny care.
I am nervous about seeking a diagnosis. I'm 17 and I think that would be considered an adult diagnosis in the US. Given the pandemic, I'm not sure how the evaluations would be given. I'm very afraid that they will not give me a proper diagnosis. I'm even more afraid that my mother will dismiss my autism as she does to me. Then if they decide I don't have autism, my parents will never let me hear the end of it and call me crazy. I know that getting help will be ultimately beneficial but I am anxious about the diagnosis process and the assessor.
@@alexrose20 @Renee M No patient or family member should have to feel this way. I can't help but think that part of the problem you and others are facing is the existing imbalance of power between doctors and patients as well as between individuals and their families.
Righr
Great video!
I self identified as autistic for a couple of years...I was uncomfortable with this!
Full diagnosis gave me closure, and then I learned who I am.
I am always impressed by your keen ability to explain the subject matter you are covering. Thank you.
First of all, I have a wall of text, so I'm sorry for the long read, but I feel like I have to say this all.
I would like to say that I love your set up. It doesn't hurt my ears or my eyes, and I greatly appreciate that.
Secondly, I wanna thank you for making this video. I was diagnosed with ADHD as a kid (one of the rare females diagnosed as a child) and it's only recently that I learned that if you have one, there is a STRONG likelihood that you have the other. Or were misdiagnosed from the start. As I was researching my own disorder, I started noticing a lot of videos about autism popping up on my feed, and I figured, what the heck let's do some research. And what I found opened my brain up like no other. I watched a video that breaks down the diagnosis process and gives off a checklist, I've talked to people about it, I've taken an online test that was developed to help individuals determine the likelihood of being Autistic, and after finally determining that there is a HUGE chance that I am on the Autism spectrum myself, I looked into what it would take to get a diagnosis as an adult. It's disheartening.
I live in the US. The only psychologists in my area that even so assessments for autism diagnosis only see children. (I haven't been considered a child for 15 years.) I'd have to travel hours to see a psychologist who would even be able to see me, and that's after a waiting period of up to three years. The cost of even seeing this psychologist, even if they were "In network" with my insurance through work (they aren't by the way) would be $500+ per hour. That's about 1/3 of my monthly salary, and I have bills to pay.
When I started doing more research, and mentioned to those closest to me that there is a possibility that I may be on the spectrum, they all basically said the same thing, "Well, duh."
I've always felt off saying, "Self Diagnosed." I've never really cared how people were diagnosed, because it's simply none of my business. If someone shows the traits and relates to the struggles, and feels that they have found the thing that finally makes their experiences make sense, it shouldn't matter. Yes, it can be life changing to have that validation in their hands, but as a person with ADHD, who am I to say that someone else going through very similar things as me but that hasn't been diagnosed, doesn't have ADHD? I appreciate you bringing in "self identifying" as an alternate terminology. I may never have the capability to be officially diagnosed, but I most definitely identify and relate to a lot of experiences and traits that a lot of diagnosed autistics feel, and I was a little afraid to openly state that I feel I am on the spectrum without an official diagnosis because I was afraid of being blocked and ridiculed for my admission.
I guess this is a really long-winded way for me to say thank you for making this. I highly appreciate you and your content and I look forward to watching more if your videos in the future.
Went on a forum stayed for 3 weeks. The level of gatekeeping was staggering. The toxic effect this has on people looking for help was something I didn't want to deal with, so I left.
I don't usually comment on youtube videos, but apparently it helps with the algorithm and this video in particular deserves whatever signal boosting it can get. Thank you for the work that you put into this channel.
Wow, thank you!
This video very much explains the thought process behind an article I saw, "You and I are not the same". I suppose one doesn't start having autistic struggles and experiences until a doctor says so lol.
I definitely like the term "self identified" more. I think I saw other people use the term "self diagnosed" and started using it myself. But I think if more people start using self identified it will catch on and spread.
Lack of money is my reason for not getting a diagnoses. But also I have a hard time understanding and articulating my thoughts, actions, or just about everything about me. And although I don't know exactly what it's like to get a diagnoses in my mind it seems like it would be hard or take a lot of work or self reflection and explanation on my part and I don't know if I have the ability to do so. I kind of feel like I have been misunderstood my entire life and I don't know that I will be able to be understood by medical professionals or whomever is doing the diagnoses.
I think I fall under the category of those who turn inward or withdraw from everyone else. I feel like I don't understand life and I feel misunderstood all the time so I stopped trying and kind of withdrawn into self.
I totally relate to not fully trusting the diagnostic process and individual professionals responsible for the assessment and diagnosing.
I think it's really wonderful if we didn't have to worry about that so much and could get the support, self - respect and sense of belonging we need through self-identification.
I wish you and everyone a good journey with all of this!
Thanks for discussing the issue of "self diagnosis". I'm 58, and only recently discovered that there's a NAME for the unique way that I perceive the world... It's called DYSCALCULIA, and it's extremely difficult to diagnose in adults! (The only reason I had the vocabulary to research my sort of brain is because my son was diagnosed with autism when he was 3, and I was 42. His therapists taught me a lot about neurotypical differences.)
Recently, an autism parenting community (parents who HAVE autism) has formed in my local area, and now has a presence on Facebook. I noticed that many of the issues they were discussing were also relevant to my Dyscalculia. I'm grateful to say that when I wrote to them about this, they changed the focus (and name) of the group from *autism* to the wider community of *Neurodiversity*! I very much appreciate that they have included me, and others like me!
Thanks for your work. After years of percolating and surfacing (at an age only slightly younger than you), I am recognizing that Austism truly is the best and most comprehensive, satisfying explanation for so much about my strengths and challenges, and I recognize myself in the "testimonies" of Autistic people (including in many of the characteristics of people who require much more support or who are nonverbal), and there is a trove of lifelong data for all three of the DSM areas... just so much. And recognition that I've never really felt, even for categories of sexual and gender or religious difference that made profound differences in my maturation and socialization. Recognition that this is the right rubric, not any of the other dx I have deeply explored as possible explanations for lived experience (though I may also have cPTSD from some childhood experiences, early loss of mother and growing up with a Viet Nam veteran... I will know more about that as time passes, because I am finding that so much I thought could be cPTSD seems now to be much more associated with native neurology, and I am also understanding that there are some things I cannot blame anyone for because no one recognized my difference (except for being identified as Gifted) . And I'm sure that as I age, I am able to mask less to myself or others. I am just beginning to investigate what is regionally available to me in the US, but I am presently unemployed and uninsured (I have a supportive partner), and it may be a long time before it is economically feasible if I do find a well-attested professional relatively close to me. As Queer/nonbinary, often ACE, and for some political and religious notions, I have been at the margins before--and I've been marginalized and self-marginalizing as an unidentified Autistic, but I deeply appreciate your sketches of the political climate and your spirit of right resistance. I'm very augmentative and tend to overshare, so I'll check it now ;-)
Thanks for making this video. I am an adult who has struggled with things my whole life. For the past 12 years I considered the idea that I could be autistic. Since a lot of the resources I read were written from the allistic point of view, I couldn’t fully resonate with things. Three weeks ago I had an experience that caused me to think about the idea again. I have been obsessively reading and watching videos ever since then, and I am now starting to feel like this is the answer I have been looking for. The big issue for me is that I can’t afford an assessment. I also have combined type ADHD and am very loud, bubbly and cheery, which seems to be less common in the autistic community. I still need to do a bit more research before I have a high enough confidence level to self-identify as autistic. If I get to the point I wonder if people, both in and out of the community, will take me seriously. Your video helps open up the community for people like me. I really appreciate it. Edit: edited a sentence to change the meaning of it as I made an error.
You make some very good comments about the medical community and how the current diagnostic criteria have been developed.
I would hope that the criteria would be revised in the future, taking into account the internal experiences of autistic individuals instead of dated external observations
And that bit about avoiding formal diagnosis due to concern for social and professional problems... That hits very hard
Thank you, thank you. Validation is so rare.
Autism is not a blight. It’s just a different perspective.
Thank you again.
I've been on a self discovery search for many years after a life of not fitting and feeling I was in a fog of confusion.
At 65 I finally stumbled on the information that sent me down the focused rabbit hole of autism and what it means.
I took the tests I found online and wanted them to show I was "normal"...they showed I am totally autistic. That was my light bulb.
My sister who has a master's degree in psychology agrees that I am, but it isn't an official "diagnosis".
If I were to even be able to find a competent way to get an accurate medical diagnosis in our already overburdened broken medical system what would be the gain for me at age 65? It would be a waste of time and resources is what.
I'm autistic. I accept this now that I know, and have found the inner freedom of knowing.
I've been processing my life and it all makes sense. Thank you for your speaking out about this. Even though a doctor hasn't given me a "certificate in autism" I know I certainly am. It's hard enough to gain acceptance without other autists booting me in the rear too!
Appreciate your channel a lot. Glad I found you.
Thank you, you are a voice or reason and very insightful.
Speaking of other countries, that's not the worst case. In my country, you cannot have an autism diagnosis if you are over 18 years old. They will diagnose mental conditions that accompany being autistic or arise as consequence of trying to live as something you're not. Furthermore, if you were diagnosed as a child, when you turn 18 they will change the diagnosis to another, one that reflects the symptoms of mental distress that are more prominent, like depression, anxiety, etc. So according to this brilliant system, the moment you turn 18 you simply grow out of your natural neurology, good job, you've made it, you are "normal" now.
Thanks for this video. I self identify at now 74yrs and have been discovered by a younger autistic woman who has helped guide me through some pretty changing waters! My medical has referred me for ADHD assessment. I can live with that knowing there is often co-diagnosis and perhaps this is the path to autism diagnosis as professionals become available in our region. It is freeing to feel there is some explanation for the lifelong sense of not understanding what I am not understanding. Also watched your NED video and it helped me see those NED's are everywhere inserting their 'stuff' and attempting to use their "stuff" to be separating in many venues - thank you. C
I don't have words for how I feel after this. I hope you know what a treasure you are. Thank you.
I am crying. And all I want to say is Thank you. Thank you so so much from the bottom of my heart. Thank you 🙏
I love this guy
I’m in the depression phase that you describe at around minute 3. It’s not in my character to fall into extremism so I don’t identify with the “Aspie Supremacy,” yet the pressure I found myself in that could actually lead to legal changes in the United States is too much.
I have three options in my opinion:
1. Keep fighting and risk permanent burnout,
2. Leave NT society and isolate, or
3. Internalize the abuse and keep on white knuckling amongst NT society.
The issue is that with 1, I’m not getting enough support to keep from burning out because current psychology doesn’t understand how autism actually works and autistic people are proving to have to much internalized ableism so they can’t handle hearing what I’m going through. The issue with 2 is that I genuinely love people so isolation is unhealthy for me too much (I still need it to reset, rejuvenate in order to remain functional). And, the issue with 3 is that my mind rejects knowingly putting myself in danger, traumatizing circumstances, now that I’ve had radical acceptance of my past traumas and have made the decision to not enter into any trauma bonds: yet, all NT society seems to be a trauma bond for us autistic people.
May I ask you for your opinion on what an autistic person in my situation should or can do? More specifically, how do us autistic people gain energy when facing constant shutdown by others because they aren’t ready to face the level of repression that we actually face?
I appreciate any input in terms of what you’ve found works for yourself in this regard. Thank you.
Gosh man. This video was so needed at this time in my life. I just got back to making my own videos as well and trying to put more information out like this and sometimes it can be the closest people to you that are doing this type of stuff. In my case it's my sister who possibly is autistic and her son but she hates it all and doesn't see it how I do and how it's helped me or believe people like you're talking about. Instead of someone who's known her her whole life. While also yes making me feel like my autism is a bad thing. I'll be making a video about masking today and totally going to mention you in it. Thanks a bunch for all your helpful insight.
I know exactly how you mean, most of the time is family the least supportive. My family is pretty supportive for the most part especially my parents, I got my dad wondering if he is Autistic himself (I 100% sure he is) ironic my moms dad was also Autistic, he was a character, I always thought I got the gene from him but now I don’t know, just recently realized my dad has been a heavy masker his entire life but everything regarding his insane behavior problems make so much sense, I used to think he was just bipolar but anyways, I have explain the topic so much to my family that my siblings don’t wanna hear another word. My brother got diagnosed with adhd as little but I always knew he was just like me, everything about him yells “Aspergers”, but he doesn’t want to identify or even research anything about it cuz he doesn’t like to be familiarized with a disorder or syndrome of any kind. I get his point of view and it makes me sad that he is missing on so much valuable help & information because the DSM5 choses to categorize the Autism as a disorder instead of a different brain 🧠 writing just like homosexuality & lefties, as long as society continues to see Autism as a disability as a whole, many ppl will continue to have a negative stigma toward it. Either for pride, influence, reputation, etc. 😔 Just share as many videos from your favorite creators on social media as you can to spread awareness! That is the only way to make things better!... I have a channel too btw, you said that your sister has autism just like you are just her sister?
@@UnapologeticFranchfries lots there to process but yes I'm I'm autisitc ADHD. Dyslexia dysgrpqhia. Possibly irlens syndrome. I've been diagnosed. Late but have and they have not bc they would rather think of it same being bi polar. Schizophrenia and other mental illnesses. Witch of course can be comorbid. Like my anxiety and ptsd but doesnt throw out your neurology and cognitive functions. I've done alot of research before and after my diagnosis and well they honestly couldnt catch up at this point lol bc it's an extreme interest. Neurology, psychology, personalities the whole shebang. Hahaha yes I have a channel. Tryinf to do a video a week on less discussed topics. Love how he does this on his channel. I'm one to not like to do the same thing but also do like sameness. Not in creating soo much. Want to get off topic discussions and combination. Sarah Upsidedown is my channel. Will actually be making a video next week on autism and codependency. It will be an interesting one. Of course feel free to share yours as well. We all have something someone else doesnf have. Experiences ext.
@@divergent_foxx nice! Totally feel ya! My channel will be touching on outside of the common topics as well! Will be checking out your channel! 👍🏼
This is a very upsetting video as I am very affected by intolerance in all avenues of society. Racism, sexism, homophobia, and all expressions of intolerance I find extremely maddening. It was good to know information however and well presented. I loved the expression 'self identified', it is very meaningful.
Great video. I do appreciate the statement of “perhaps” as a suggestion to not use “self-diagnosis” since it’s being used against us rather than how some people say “stop doing this!”
I’ll say that, to me, just because the term “diagnosis” or “self-diagnosis” is being used against us doesn’t really mean that those terms shouldn’t be used since they’re still accurate and valid. “Diagnosis” simply means identifying the nature of an illness or problem by examining the symptoms. That’s specifically why the term “self-diagnosis” is being used to specify that the examination and identification was done by one’s self as opposed to a standard diagnosis or “medical diagnosis”.
When I recently had an ear infection, I had 4 doctors and 3 nurses misdiagnose it, but I accurately diagnosed it myself as a fungal infection. With that said, they all didn’t listen to me because they didn’t see the validity in what I was saying (and I also wasn’t 100 sure and was trying to tell them to consider a fungal infection rather than telling them for certain that’s what it was but I was saying that, based on the symptoms and my knowledge of the situation and how things were worsening with their treatment, fungal infection seemed most likely and should’ve been treated).
By the time I got to see an ENT, after about a month of terrible pain and worsening symptoms and mistreatment, the ENT simply confirmed my “diagnosis” and said that I did great on that, especially for it having been my first ever ear infection and it was unfortunate that it took so long and that I had to be so insistent and have multiple medical professionals tell me otherwise and disregard my suggestions and insist that I continue their treatment that was making the infection worse simply because they didn’t think my input had value compared to their medical training. At the end of the day, I was the one to suffer for it and they moved on with their lives without a care and this was a simple ear infection.
Now just imagine for things like the inner workings of someone’s mind and the motivations behind their behavior rather that an infection they could clearly see growing worse with each visit 🫤
I was literally laughed at when I told them I think I am having reactions to wheat after life long digestion problems. They laughed and rolled their eyes because the book wheat bellies was out and popular at the time and it was trendy to be gluten free. Years before that when I first tried for help I had no health insurance and it took months to save up for an appointment to not be listened to. The dr had an ibs and a fodmap phamplet tossed at me and was told you have ibs, you figure out what irritates you and just don't eat it. I tried elimination diets for years to discover it was wheat and gluten. When I finally got health insurance and tried going to a different dr; they literally laughed and dismissed me when I tried to talk about my food reactions when I was trying to find help because there was still more to it.
I had cealiacs and a food allergy to wheat and it turns out soy and almonds on a more muld level enough for me to not figure out but was still feeling the effects of it. I also have extreme anxiety and fears speaking to medical professionals because I always recieved the same type of treatment if I even suggest what I think might be the problem but also ignored when I even try to ever present symptoms I have.
I tried to tell then my allergies are literally unbareable just wanting even prescription allergy medication because nothijg over the counter worked and I was suffering terribly for years. I finally had to take my husband to appointments with me With his visit they gave me an allergy panel and actually asked hin follow up questions ans found I actually have terrible allergies that overlap for the entire year and to not surprise to me I am allergic to wheat.
Their instinct is to immediately disregard autistic people and to distrust them wether they know about the autism or not. I don't like neurotypical people and I actively avoid them as much as possible now for a safer and happier life. I avoid health care because I am never treated like a valid person. I get imense anxiety just the thought of medical care filled to the brim with bullies and dismissive and uncaring narcissistic trait having people.
It isn't fair having to live life and having medical care or nearly all vital services means having to hope neurotypicals will decide to see you as a valid person that day. They can just write anything down about you on the chart and their preconceived notions will follow you and used against you as if they don't already do that instinctly.
The excact same problem exists within the MCS Community and its the reason I keep prosponing my 'outing'. My past with the MCS community as content creator has been challenging. Realizing MCS may be a part of autism burnout it would be important to give the community a shout out but I still dont dare. Hoping for courage to pop up again sometime. Thank you for sharing your experience 🙏 Lots of greetings from Namibia ☀️♥️🇳🇦♥️☀️
I love the term "self identified", thanks for providing it
Wonderful video. Thanks for this.
I feel a lot of our problems point towards Simon Baron-Cohen because despite being one neurotypical man he has had such excessive influence on how healthcare views us.
Sadly the press has sensationalised some of his hypotheses. From what I have seen watching his talks I believe he genuinely does wish to help the autistic community though.
Thank you so much!
I’m 59 and a few months ago I came to understand that I’m on the spectrum - it really was an epiphany and I had no idea how ignorant I was about autism.
I’m a Brit permanently living in another country and, for various reasons, I’ll probably not go through the process to get an official diagnosis.
I’ve seen the gatekeepers online and they really do reinforce the imposter syndrome especially with the absence of a diagnosis.
Anyway, this is a bit late but thank you for the video.
I'm really on the fence about self id. While I understand it, as I self identified before my diagnosis, I also identified that there are many circumstances where someone can incorrectly self id due to parallels between neurotypes and shared traits, subjective biases and magnification, misunderstanding descriptors, comorbidities mistaken for traits, etc. So, it's really hard to be certain, actually, and this is why I sought an objective measure and diagnosis, in the first place. Some of the neuropsych tests can't be fooled.
However, I can easily accept a self id, if it seems legitimate enough and apparent, to me, as autism is a si, for me, and I am autistic, myself, so I know the difference between actual traits and simple red herrings.
Although it's uncommon, there are also enough people who will say they are autistic for the sake of leverage in a discussion or argument, or for any remote or malevolent reasons, for me to remain skeptical until I can be certain enough for myself, in the case of someone self identifying.
Essentially, I'm cautious around self id people, though I will at least treat them as autistic until I can be certain, but my acceptance of their self id, internally, is not solidified until I am convinced enough.
It doesn't take much to convince me, though. But suffice to say I am too paranoid of nts lying (because that's what they do best) to really just take everyone at face value without question.
I will never, however, ostracize not challenge someone who self ids.
(Hopefully my words don't get taken the wrong way).
Do you have any words on this, Quinn?
Oh, I know where you're coming from. I can't quite bring myself to self-identify as yet because I'm used to all in sundry dismissing my quirks as part of being blind - even though it should be patently obvious to anyone with the least scrap of intelligence that they are not. It was my therapist, herself autistic, who first suggested it. I'm hoping to get a diagnosis so that I can really know, after 57 years, why on earth I can't seem to fit anywhere - including into my blindness community.
Love your dalek mug
I subbed when I saw minis in the background. The reverse camera swoop going down the "frontline" in theme with the dialogue - yeah, I like this dude.
Excellent explanation of a highly nuanced and important topic. You have convinced me to say Self Identify instead of Self Diagnose. I am one of those people who can't "risk it".
As much as I think "self identified" is less assuming, being self identified as anything other than the norm is already used against people, like with being trans or non-binary. The term may even spark more vitriol than with "self diagnosed". I personally feel that with the context of saying "self", it implies that its not been done professionally, so can't really be confused as such. The definition of the word "diagnosis" does still work pretty well in this context. I'm personally professionally diagnosed, so I'm mainly concerned about how others may be treated, and how the more hateful kinds of media may treat all of us as an entity. It also feels a bit off to label it as an identity, since its not really a personality trait, but the physical shape of our brains, and the physical way it responds differently to stimuli.
Around the 8 minute marker, all the information you’re sharing is getting me out of my head and into reality.
I hate it when I say I'm autistic and I'm then asked When was I diagnosed? But I don't have a formal diagnosis for many of the reasons that were listed and some others.
Excellent commentary. My mind is opened to aspects I didn’t realize.
thank you so much for making this video, impostor syndrome has been hitting me really hard lately
1st of all I Forgot to mention! Very happy your wife is good, can imagine how stressful it must be to do this while going through that situation, mad respect for you Quinn 🙏🏼 & your advocacy, I consider you a mentor & you have a day job too!! 😰 Oh my goodness I need to know how you manage to do these weekly video??... I will post 2nd part separately!
I've self-identified for a few years now and am finally in the dg loop. I'm afraid however that even with several traits already recognized the neuropsychologist I've yet to meet will come to the conclusion I'm not affected enough.
It's a weird thing to long for the "official" label while I'm also critical of the medicalized disorder model based on the premise there's something fundamentally wrong with us.
But yeah, excited and scared of how it turns out for me in the next few weeks...
Good luck
How did you go? I am 58 and self identified and awaiting my turn for assesment any tips?
@@kayjay-kreations Hey! Thanks for asking!
As tips go, for me it was important that i know my own case. I know my traits and how they "fit" those pathologizing diagnostic categories. As I was reading and looking into it, I wrote down anecdotes of how those situations present in various life situations and the kinds of challenges i have.
Only person in my family knowing me and AS well enough is my wife so she helped by pointing out some things she had noticed.
What I was "lacking" was clear evidence from childhood so that complicated things a bit. I also really came to see how the process was about obvious behaviors rather than taking into account the burden of compensating and masking.
So the verdict was that I'm too skilled socially (even if it is with specific situations and with a great cost) so the dg was Asperger's traits. So it's not quite a full AS dg. The impression is also that the process was heavily dependent on the individual professionals doing the assessment. It's still helped me in explaining my situation to friends and family.
Good luck on your journey! I hope the assessment will be helpful for you even though the results aren't the real authority, but you, knowing yourself the best.
I am one of those "self identified" people. There just isn't anything else to describe who I am. I also have adhd that went undiagnosed, probably because I was.a girI. I don't think either of those things is a disorder. It's just a different way of interpreting the world around us. That's not a bad thing; the world needs all kinds of thinkers, and if we all view the world in the same way, you don't get that. Thanks for a great video that makes me, or the first time in my life (I'm 66), feel included
Excellent commentary. Thank you for posting.👍🏽
Great video, Disproving once again that autistics have no empathy for others. A minor criticism I would make is the NHS logo (16 mins) which includes Ireland appears to have made a bit of a land grab.
Just discovered this channel. I like it.
You are a gem. Great video!
Thank you! 😊
When I was in high school, I seen autistic traits in my self. However, this was in the 70's when you had to be real severe to be diagnosed. My case was not like that. I am now 66.
These thoughts I left behind until i was near 50 years old. It was then that a former employer pointed out the fact he thought I wass autistic. Going back through my life i could see it as being present all my life.
Thank you.
Turned away for recognizing the difference between two emojis? Who possibly gets through?!
Nah, that is wild and foul, you can recognize emojis by giving them labels. Honestly we should have autistic aspergers diagnose us not some NT who hasn’t lived through it and stereotypes you as high support.
Soooo many low support need autistics came up with multiple ways of navigating the world and it’s not two emojis that are gonna throw them off.
2nd I want to thank you for bringing up this topic, you actually beat me to the punch 🥊, I been waiting for the right time to bring this topic up but I glad you did it first! Will make it easier for me to just add a couple of things that I am also very worried about. So could you elaborate a little more or point me in the direction of the history behind Aspergers Supremacist, because apparently you have one branch BUT I heard another perspective out of the whole supremacy thing (this seems to be the more known one in the community & you can google it: so it’s been know that some ppl who were diagnosed as Aspergers, believed that they were not only superior to all other Autistics but to even Neurotypicals, (I wouldn’t be surprised that some of us after years of bullying & oppression they got a boost of ego & might of taken it a little over their head. But my thought on those ppl is, Let them! If they feel smarter than anyone else! Let them!! Social media is full of narcissistic bitches & no one say shit, but Gos forbid an Autistic/Aspergers feels a little good or better then others cuz that makes him a supremacist. Ok That’s Not it Tho! I haven’t called and Aspergers supremacist just because of my channel name 🙄 ppl don’t get Sarcasm I guess 😪 (here I am thinking I was funny). Anyways, i been getting attacked for using the term Aspergers but idk if they are not ready that my channel actually says “ASBERGERS” so they dumb. Anyways, my main issue is that they are criticizing everyone and everything, one has to watch their words and whatever they do because they’ll either call you and ablest or supremacist which I see people need to calm the fuck down. We’re supposed to be supportive & I get more attacks than anything else for almost everything. Ppl look at my channel with skepticism and they don’t even click on the video before they start to judge. It’s really sad. I am a little confused about why you say that Aspergers Supremacist are the ones that don’t allow ppl to belong to the community, I wouldn’t be surprised is some “Know it All Aspie” might of had that attitude but I doubt thats what the supremacy was known for it’s actually the complete opposite, the Neurodiversity Community has split into 2, one of the is the one that you explain in your videos and the other one is this judgmental, extremely sensitive, that has this really word view & twist on any mental disorder & wants to just make everyone fit that disability view & if you’re not in their team you are an ableist, My video will explain more into detail, but pretty much encourages ppl to stay the way they are, to stay depressed, they feed on pity & that everyone should understand their issues & struggles & they criticize things like motivational post and stories they call it Motivational Porn, is really dark, I really don’t agree with that point of view from how the community is drifting & how they are confusing all these new generations & already confused minds. 😔 I am all about acceptance but also about encouragement and positivity. Seeking improvement & happiness more than anything. Everything is in constant movement, nothing ever stays the same so encouragement & challenges are in my opinion is good thing. It’s in one to take it or not.
I'd be more than happy to discuss all of this with you Francesca, but not in RUclips comments. Please email me (address in the 'about' tab) and we can have a chat about all of the topics you raise here 👍
@@Autistamatic Yes Sir! 😎👍🏼
Thank you 😊
Thank you for this video. I'm 42 and identified myself as autistic after my son got diagnosed. Much of my biography became understandable through that lens. I'm not sure if I'm going to pursue a formal diagnosis as it is very expensive and the gains are uncertain at best.
Thanks for this video, and very well said! 😍
So, basically: have empathy with others and "don't feed the troll".
Nice video, I liked it!
A hug, dude!
Regards from Chile!
This is STRONG 💪🏻
Thank you 🙏
I prefer "self identify" too. Really good video.
Interesting to hear that it is not legal for the NHS not to recognise a private diagnosis. I was privately diagnosed for ADHD but was advised by my GP that I would need to go back on the NHS waiting list for their own diagnosis before I can begin titration. (2 years later…)
I have since been rediagnosed as ADHD, and both the private and NHS psychiatrist recognises that though I meet the criteria for ADHD, it is most clear that I express autism as the primary presenting feature of my neurotypology. After decades of adulthood and masking, I feel quite imposter to describe myself as disabled.
The gate keeping both for ASD and ADHD are frustrating. Particularly in light of the recent BBC horizon documentary which basically reinforced prejudices regarding the diagnostic processes.
I am quite anxious about being formally diagnosed ASD, not because it will change anything (it changes nothing I don’t already know), but because of what abuses I have heard people have received from their psychiatrists and the feeling of finality should the assessor deem that for whatever reason I do not meet their requirements.
For these and other reasons, I respect the self identification of ASD and ADHD *above* formal diagnosis.
This was amazing and I appreciate you so mujch.
I wonder if these people who criticize self-identified people would say the same about those who also say they have anxiety, depression, or addiction. You really don't need a doctor's diagnosis to know if you have a problem with those. A doctor can confirm that and help treat you or provide counseling, but you KNOW you have any of those. The same is true with autism, especially when you find a community of people with it with super-similar experiences and ways of thinking.
When i was a kid, you basically had to be nonverbal to get a diagnosis. I was just considered the weird kid. Now, as an adult, and a rather old one, there is absolutely no benefit for me or anyone else, in my getting an official diagnosis. I don't need the validation, there's no accommodation that would matter to me in my current situation, and it would cost a lot. And i resist jumping through other people's hoops.
Ill put my hand up here. Officially ADD, awaiting ASD diagnosis.
I have felt many varied emotions, as we all do. I've therefore gotten angry, Ive been critical of a society made by and for Neuro Typical, when I've felt excluded from a service, and therefore society because of my limitations, I've been the same when faced with sceptics, too often . Its unhealthy, unhelpful and unfair. It is human behaviour though.
Ive been waiting for 14mths, Im told it will be another 16mth for diagnosis.
Well said👍
I put the idea forward that from an Autistic perspective normal people seem to be schitzophrenic because of how we experience normal emotional instability. I went right off the idea when I found an Aspie trying to prove that neurotypical people are literally suffering from a mild form of schitzophrenia.
I only played with the idea of a way of explaining to people how it feels to be autistic. It is a bit like living in a world full of schitzophrenics where you have to constantly control what you do, think and feel in order not to trigger their emotional insecurities that you can't see, understand or percieve until its too late and you've riled somebody into a rage or another type of emotional reaction.
I was 15 when I first realised I might be autistic. I almost got a diagnosis around that time but I went to a counciling session before I went to the psychologist and got really put off from the horrible experience in counciling (it was like going to see a Psychic medium, they was very vague and didn't help me at all). I'm almost certain I suffer from PDA (Pathological demand avoidance) so the entire experience was traumatic for me. I'm 31 now and I'm seriously considering bringing it back up with my GP. There's still the demand avoidance issue I have though and I'm torn, in one way I really want it and in another way I really don't want the stress of it all. I can't deal with it! I feel so useless. Nobody takes me seriously though. I've been on the brink of suicide for most of my life and I want to change the causes but nobody believes me. nobody knows the internal struggles I truely suffer from. I never realised just how difficult it was going to be for people to understand me. I guess that's why I've hidden it my entire life.
I am using the term self identifying too. The amount of tests, books I've read from those who are diagnosed, and have lived e experience. So much from that and people like yourself and the community on RUclips describe how I experience the world as well. Too many me too moments. Yet I am denied access to the waiting list for autism diagnosis due to not having living relatives who spent a lot of time with me growing up.Adhd forms still in progress but those in authority state without people from your early childhood completing observers forms, you are unlikely to be put forward for diagnosis. Barriers as a woman are just getting higher and higher. The place doing pre assesment, has a website stating 'we specialise in children and young adults' It's hardly surprising there is so little data on female autism, when do many adults are being tested on criterior designed around young boys. Adult presentation is different and so too is females autism.
Forgive my language but it feels like 'no knob, no diagnosis.'
HI. Thanks for posting. As someone who grew up on the "alternative" comedy of the 1980s, your summing up made me laugh out loud and nod sagely in equal measure😁
I'd like to talk to you about your experiences seeking diagnosis. If you'd be open to a chat - spoken or in writing - please get in touch via the email address on the "about" tab of this channel or the contact form on the Autistamatic website.
Lifelong “freak” here lol. As AFAB, having “slipped under the radar as a child, at 33, it would now cost me between $3000-$5000CAD to get diagnosed for something that I can guarantee you I have lol
I think we should talk about how people associate us with school shootings and thinks of the like
16:03 omg I laughed so hard, this can’t actually be ! Where do they get their diploma
I self diagnosed before being officially diagnosed, and I respect anyone who self diagnoses, because no one would actually CHOOSE to be autistic, and I know they don't come to their conclusion on a whim. After all the research we do to get to our conclusion, we usually know more about autism than our GP, our psychiatrist, or any counselor we might be seeing.
I suppose I could be considered "self-diagnosed", but I don't like that term. If I ever get an official evaluation I'll call it a diagnosis. Otherwise, all I like to say is that I can observe many things about my life, and my internal thought processes, that mirror a lot of what diagnosed autistic people experience. Maybe I'll start using the "self-identified" label.
What you're describing is known as "pulling up the ladder." Same kind of thinking occurs with people who managed to pay off their student loans being against student loan forgiveness for others, or descendants of immigrants supporting politics that would deny immigration and criminalize those already here that are working toward citizenship. Cruelty is not exclusive to the neurotypical community, not by a long shot.
I remember interacting with the autistic community 15 years ago, it was pretty toxic. Allot of it was elitism and I started to believe I only wanted to diagnosis to feel better then everybody else so just gave up. While I do think most people are idiots, I'm well aware that its not really true. It mostly comes down to the fact that I find it odd (and sometimes infuriating) that people are interested in things that offer no real factual information or educational value. Like celebrity obsessing. Why are people obsessed with a woman they've never met getting a boob job or something equivalent. The only "celebrities" I'm interested in have earned their status by making scientific progress or by providing educational content, like Richard Faynman and Carl Sagan.
Thanks for this video. I'm a pensioner and I'm being assessed for ASD this week, after a wait of 18 months, so this video is very helpful. But, if may make a criticism, I don't know why you're being so negative about "conspiracy theorists" - my experience is that they're the ones who, unlike the rest of us, have examined the evidence.
~Yes, i agree with this!!!~From what ive seen, critical thinking is an autistic quality~
I'm only a few minutes in but I want to type my experience, then I'll rewind the video.
I recently experienced a "dark night of the soul" moment when I realized I had autism. It felt like ego death.
If other autistic people experience something as profound as I did, then I completely understand how it could lead to extreme thinking.
It's been over a week now and I'm still working on "rebuilding" my ego, since so much of it essentially disappeared when the autism clicked.
Does this make sense to anyone?
One of the earliest releases on this channel concerned the "stages" of Relief, Grief and Belief that most of us go through on realising or being diagnosed as autistic. Who and what you are has not changed. Nothing has been lost. You're the same person you were the day before you knew, but with new knowledge and fresh perspective. Not everything that reveals will be a relief - in fact some things will make you cringe and you might feel some guilt or regret. It's normal to feel that way and it's not unusual to feel negativity, anger or resentment over past events either. It's up to us whether we choose to let that anger be our guide or allow it to subside and open ourselves to the possibilities our new perspective can open. There's no doubt the world looks very different through autistic eyes, but we're slowly teaching the world what we see.
@@Autistamatic I'm sorry if I gave the impression that my revelation was negative in nature, but it was the total opposite!
Like all my awkward moments made sense and I forgave myself for all of them at once!
I was diagnosed PDD NOS as a child, as someone who had lived life negative with my diagnosis being called the R word, trying to hide it, I hate to be this person I feel self diagnosis kinda offensive, but maybe I'm looking at it all wrong, I can accept someone saying I might be on the spectrum, but I can't come to terms, maybe I need more education..
My therapist told me I’m autistic. Quite vehemently in fact. Does that count as a diagnosis? I self identify as autistic either way.🤔
Edit : I’m 52 and recently found out after I dropped my life long mask and had a massive burnout.
This isn't very relevant to the video, but did I hear that right?! 50? Wow lol I would've guessed mid 30s! What's your secret bro?
I think he looks 40-50
Aspies look young er
@@SotraEngine4 35-40 for me
Are you an Anarchist? The way you talk about hierarchy has me hoping.
Xdddddd
Covid anyone?
I think i will begin using the term "self-identified". My mother thought i might be autistic as a child, but when she mentioned it to my doctor she was always told that I was fine and seemed normal. I am sure that the fact that I am female was a contributing factor to my dismissal.
I recently began therapy, and I mentioned to my therapist that I believe I might be autistic. She actually encouraged me to NOT get an official diagnosis. She said I very well might be, but the diagnostic process is very long and expensive, and there are little to no resources once you do get diagnosed. I also have PTSD, which could cause me to be dismissed entirely without much else investigation. Additionally, she told me that, especially as a mother to young children, a diagnosis could be used against me in some pretty awful ways. She told me that if I feel like I am Autistic, that i should live and treat myself as such regardless of what anyone else tells me.
It was very validating to hear that a professional believes my experiences, and it is also very validating to hear so many Autistic people believe the experiences of self-identified individuals. I am very glad to be a part of this community where I finally feel accepted and loved for who I am!
I'm female diagnosed with PDD NOS which I think was changed to ASD, also suffer epilepsy, I was diagnosed in late 80s in special education all through school, trying to hide my ASD, my question is why do all the sudden ppl want to be on the spectrum, life isn't easy, I got labeled the R word, and told I wouldn't be able to work, and be a burden to society, I asked earlier, and commented I don't know how to approach this self diagnoses, honestly was finding it offensive.
@@danielledinenno8714 People don't "want" to be on the spectrum. Research on ASD has come an incredibly long way since the 80's, and a vast number of people who have spent their entire lives struggling with this disorder but were unable to put a name to it (again, because of a lack of research and negative stigma) now have accessibility to knowledge (via the Internet) that is relevant to their lived experience. Being able to identify these symptoms and struggles make finding coping mechanisms and support MUCH easier. Diagnoses are more common now, not necessarily because autism is more prevalent, but because we as a society are now much less likely to just dismiss anyone who isn't a white male child as being "spoiled and misbehaved" or "ADHD." Many adults who got "missed" as kids are now seeking a formal diagnosis. But our healthcare systems are still severely lacking in education, stigma continues to exist, and a diagnosis is still largely inaccessible due to increasing costs and provider shortages.
@@danielledinenno8714I don’t judge people at all for self-identifying as autistic because I just assume they’ve done a ton of research, talked to those closest to them, looked at their entire life’s history, and struggled all throughout their life in probably the same areas. Not to mention how expensive it is to get an assessment, not everyone has that privilege. I’m sure there are some people who claim that label without all of that but at the end of the day, how can we tell who’s being genuine and who isn’t? I certainly cannot tell.