As I usually feel when I watch autistic people describing their experiences, it's like I'm watching someone talk about the things I never dare to say. I've been researching for around two years now and I'm terrified of a diagnosis being denied and having the one explanation that finally makes sense taken away from me. Thank you so much for sharing!
Even though you can learn from different insights, you will always know yourself better than anyone. There is nothing that they can take away in that. But getting a diagnose might give you access to resources you have not got now and make your life more bearable. Possibly even easy. I didn´t want the diagnose, but right now, I am happy I have it, it feels like the difference of doing a highwire act without or with a net.
What gets to me is the people who would doubt my hidden diagnosis would rather believe I’m just a defective weirdo. They would choose a closed negative opinion over respecting a formal diagnosis with understanding and empathy. I’m sending you 🤗 if you’re struggling. I understand. You’re not alone and you matter. 🌻
@Guy Whose opinions will offend you all that you know about what doctors do is wrong never should have been allowed to occur the entire Healthcare System is a death trap that's us human diagnosing and treating us humans with ritalin fentanyl surgeries amputations eviscerations the entire construct should have never been allowed by females to exist in the first place. it's only been going on for thousands years it's about time to shut it down
@Guy Whose opinions will offend you yeah most pharmaceutical medications especially for mental disorders are terrible. I have life long auto-immune disease and IBS that was kicked off by some anti-depressants
Your diagnosis is burned into your DNA Y chromosome surging testosterone just like me we have closed vaginas penises lethal weapons mass destruction never never to be used for pleasure ... or male dominance .... 8 billion of us are 1s distinct unique isolated individual separate .... you must learn how to control your mind so you behaviors ... we all have the exact same singular purpose, maintain females and control of the birthright eradicating rape child abuse parental negligence cannibalism. we all have the exact same diagnosis, embedded PERMANENTLY IRREVERSIBLE etched into Double Helix DNA, XXXY sex chromosomes within every ovary of every female two for security in pairs, nestled in their pelvises being incubated 37° C by Chi Life force energy generated by muscles meat motor locomotion engines producing human power momentum purpose ... we're built upon carnivorous monkey killing bloody red meat eating chimpanzees who rape and are countables they have free will controlled by female dominance ... I cannot hate rape terrorize torture traumatize assassinate behead eviscerate play doctor play God playhouse nutrition gynecologist play games of throne build bombs to blow up pregnant mothers into bits and pieces of charred meets that we eat because we're candles we killing each other and can not see reality because our brains are so big susceptible to mental illness when we all get a good night's sleep our brains can reset harmonized and neurotransmitters then we wake up fresh until clarity peaceful to pursue happiness work towards female dominance it'll be fun frustrating and boring ....
I got the results a couple of days ago. The report said there wasn't enough evidence to diagnose. I was devastated until my personal psychologist called me to say 'It hurt me so much to read that, just because of a couple of questions, when I KNOW you are autistic. I KNOW how hard it was for you. You're not crazy. I believe you'. I started crying immediately. That paper was the validation I needed for all the struggle, something to prove there was actually a reason why everything was so hard. I'm still feeling like an imposter, but at least, I can try to hold onto her words when that happens. It's so scary to feel like this, and hopefully we can all find peace in just knowing we are who we are, ourselves.
It took my sister-in-law, after witnessing a meltdown, who is a mental health nurse, to sit down with my mother and say, "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 anyone who knows anything about autism will tell you that after spending about five minutes with them."
I am self diagnosed. Everyone who knew me and read the description said, Oh yeah. I tried for a formal diagnosis only because I could get help with things, like employment. I was in my 50's at the time and they did not want to bother with me. I am in my 70' now and the problem is my sister. She likes to tell people that she has a sister with autism, but she makes it sound like I'm retarded. I am a member of Mensa. She says our parents told her at 14 she would have to take care of me. She should up once every 6 months to say hello. Now I get the impression she thinks she should take over, she shouldn't. She thinks I am worse, I am not. How easy is it for someone to take away your rights? I have supported myself all my life I have a house and a car. And I am retired and happy for the first time.
Exactly. I would worry about losing rights if I got a formal diagnosis. A court could deem me incompetent and slap a guardian or power of attorney on me (If I was rich) or take away 2A rights, etc... I would just as soon fly under the radar. I am in my 60s, recently retired, happily married and self sufficient.
Yeah. I've heard of family members using formal diagnosis against each other. I guess if you have a toxic family system it's better to just cut ties and not tell them personal things.
I am the other way around, I have a formal diagnosis, but people didn´t believe it. I am 49 now, diagnosed three years ago. Especially when you are smart too, a lot of peculiarities are just hung up on that. Good to hear you are happy. Your sister needs a reality check. Your "rights" aren´t rights at all, they depend on how others see you. You do the same preventitive character defamation to your sister. Just tell people she is not a very good judge and has misjudged you and others in the past and the problems it lead to (doesn´t need to be true, just needs to be out there as an anti-dote to her strong opinions) and then people will need some kind of proof again.. Alas, if you don´t resist, taking the moral high ground, some people will assume that where there is smoke, there is fire and on that basis alone they might want to protect themselves and others, (they might tell themselves) even protect you and take away your comfort and happiness. Remain vigilant, but not to an extent it destroys your happiness, because that would defeat the purpose.. :)
I'm in my 50s and undiagnosed. I've already been deemed incapable by my sister and Dad through having a breakdown from repressed child trauma. My sister's response over the autism was first to say that she finds whatever challenge I have difficult too, and the second was to tell me about her friend's challenges with ADHD and how medication helped. I wouldn't trust them to listen to me in twenty years any more than they listen to me now. This is why I disagree with the 'disorder' label in the diagnosis - it should be 'divergence' instead. I wish you all the best. And don't go on impressions you feel - stay solid in your knowledge that you're perfectly capable, thank you very much. Ask them to be specific - where exactly do they think you need the help? Big hugs 🤗
Your sister is just trying to Gaslight you she is not a loving sister if she behaves that way she's trying to intimidate you this is probably a part of a personality disorder that she has herself try to move away from her and go no contact with her. It's not that easy for them to take away your rights you sound just fine to me. But you shouldn't even have to worry about it. My mother used to do that to me she was a borderline and she used me as her scapegoat child she raised my younger brothers and sisters to be that way later on my brother started to do this to me at one point he followed me into Social Security office and try to insinuate that I had mental problems they kicked him out they could see right through him.
love how you went “oh! got a little emotional there!” meanwhile I am bawling ugly crying. thank you for discussing your experience. what makes the reach for an official diagnosis, (for folks like myself still trying to get one) even more difficult is the american health care system; which is predominantly driven by profit. it dampens the will to seek medical attention on top of the stigma around autism that already feels like a constant battle. I have certainly come around to accept myself on the spectrum now even more thanks to folks like you. ♥️
I can't thank you enough for this video 😭❤️ I had my assessment about 2 weeks ago... Didn't go well... To my surprise, there were almost no questions for me, instead it went like this: 1. Describe what you see in a picture book 2. Act out how I would teach a person to brush their teeth 3. Tell a short story using 5 random objects Somewhere in between these tests I was given a short break and told to entertain myself with the stuff I was given (which as I later found out was also a part of the diagnostic assessment). I just played with 2 little spinning toys. I was also asked a few questions about friendship and relationships. Something along the lines of "How do you understand, when someone is your friend?" and etc. It all took just an hour, I thought, that maybe it didn't take long, because the psychiatrist was also my therapist, but when I got the results with "not on the spectrum"... The thing that upset me most (and also shocked me) was that there were so many inaccuracies in that paper. So many things we talked about before were completely disregarded. Additionally, I wasn't asked any of those questions and to find out the answers, you either have to know me well (because I'm used to masking around people I'm not close with) or at least ASK! As I said, we have discussed some of those in therapy but maybe she has forgotten? And if she did, WHY DIDN'T SHE ASK!? The cherry on top was this sentence: "You're lucky to not be on the spectrum, because of how much struggles the people on the spectrum face" ... YES. I KNOW. BECAUSE. I. HAVE. THOSE. STRUGGLES. You would know that, if you didn't ignore what I said. It took me so long to get to this point. So much research was done. I know these things about myself. The good thing is, I now have more knowledge about what kind of information I need to provide and what I will discuss, because I have the assessment paper as a reference. Thank you for your channel and your videos, really ❤️ Thank you for doing what you're doing ❤️ (Yes, I understand, that there's a possibility I might not have ASD and have something else, but nothing would be clear, if my words and experiences get completely disregarded and ignored like this)
I'm so sorry to hear about your experience. I've been doing a lot of research finding videos on youtube about women discussing their stories of trying to get their diagnoses and it seems this is very common as the practitioners using the screening techniques designed for 8 year old boys and trying to apply it to 30 to 50 year old women who have been masking their entire lives. (Which applies to any adult spending their entire lives masking.) Entertain yourself with these toys!? Describe this picture book. OMG that sounds exactly what happened to you. And OF COURSE I'm not surprised you would be diagnosed as neurotypical. This is one of the reasons why I will not waste a bunch of my time or money on some assessment done by some stranger who is reading out of a book on whether or not our experience is valid or not. Please set your therapist straight!
I'm really sorry this was your experience. That does not sound like an official assessment at all. I had my assessment recently. I was referred by my psychiatrist and my psychologist. Both of them were "able" to diagnose me themselves but didn't feel it would be appropriate as they were not specialists. Instead I was referred to a psychologist who specialises in diagnosing women. It was four days of assessments (many hours). This included IQ test, interviews and everything else inbetween. I was scared that my diagnosis would come back negative and invalidate my daily existence. I was also scared that it would come back labelling me disabled and unable to fend for myself. I suspected I'd be on the cusp of qualifying - that it could go either way. But my results was Autism Level 2 (automatic qualification for disability support) and ADHD. I was shocked. The assessing psychologist told me that she has a lot of people who have self diagnosed and referred themselves for the test. Sometimes those people have been right on the money and achieved diagnosis. A few were given no diagnosis. But interestingly, she found that most were not autistic but were diagnosed with something completely different and unexpected - yet validating and helpful for their onward journey. This is why, if you're fortunate enough to be able to afford it, I would encourage people to be formally diagnosed with a very well qualified specialist. I'm sorry for your experience and I wish you all the best.
@@duck7237 thanks for the reply ❤️ I'm glad, that things went well for you) and I am looking for another place (the problem is, there's only a handful of specialists, where I live and a lot of them only diagnose children, while some, who are supposed to be experts, seem to be biased and have outdated views on autism, like the psychiatrist I went to)
@@Ouchimoo Thanks for the reply ❤️ It really sucks, that there isn't enough research on autism and anyone, who isn't a cishet white male has a hard time, because most autistic women, poc and people in the LGBTQ+ community usually present differently and mask A LOT. Some "professionals" just decide to stick to very outdated sources, instead of putting in the effort they are supposed to and learning about new things discovered
@@blinobyknovennyy the battle is real. So many unqualified "assessors". I was very fortunate that my assessing psychologist was not only female, but specialised in diagnosing women and was autistic herself. I really hope that you can find the right person for you too and get the assessment that you deserve. Take good care of yourself. x
I think most of us know who we are. I don’t like the idea of having to be ‘credentialised’ by some professional who has no understanding of the inner experience of Asperger’s. It’s like saying we need a licence to be ourselves. 🌻
You have no clue how much this helped me. What’s ironic is I had that “Me too!” Moment with this video. I always have doubted if I understood myself, and hearing you explain my exact feelings was so freeing to me.
I have been sitting somewhere between feeling like an imposter and being afraid of misdiagnosis since I first realised I am autistic. For a year or so I was going back and forth in my mind and a few months ago decided to go for a diagnosis. I have an appointment in November next year. Feels like forever right now.
It's unfortunate that that's a completely reasonable concern. There's a lot of undiagnosed autistic people out there that either have a false negative or are unlucky enough to get a bunch of other wrong diagnoses that then follow us around forever even as medical science advances. OTOH, a proper diagnosis can be a very big deal that can make it a lot harder to pretend like it's not a real thing that you've got.
Late life Formal diagnosis was such a healing event; it made sense of my history. It helped me enjoy my solitude as a woman collapsing into her whole story.
This is exactly what happened to me. The first psychologist diagnosing me got it wrong. I asked beforehand if they are able to diagnose an adult female, they agreed. They couldn't! But I was so sure and tried it again at another institute and they said after 3 sessions " we have no doubt". The diagnosis was important to get help. I now have a special therapist, who is experienced in working with adult autists. And I now get help and accommodations in the workplace. And you are right. The diagnosis won't help with others believing your inner experiences.
I stopped my formal diagnosis process a year ago, out of fear of being diagnosed as not autistic. The validation for my life experience I got from studying autism and from members of Online support groups was immense, I didn’t want to loose it, if diagnosed otherwise. I am 39 and I just thought it is impossible I lived so long and wasn’t diagnosed earlier. But, it is impossible for me to call myself autistic without a formal diagnosis, because of two reasons. First, I have a similar experience to you, I was not believed and I tend to dismiss my own experience. Second, I am not a fan of the whole concept self-diagnosis, and I just like to have a paper for everything. So I am torn what to do. Anyway, It’s a great video and I am happy to know you have a similar experience :)
I feel this so much at the moment! I have my ADOS evaluation on Tuesday and I‘m super nervous but excited at the same time. I was really scared about trying to get a formal diagnosis, but having my initial consultation was extremely validating and they agreed that I should definitely go through the process of being evaluated for both ADHD and autism :) Edit: 17/11/22 - I’ve just been officially diagnosed with autism and ADHD combined type!!!! 💘💘💘
Hi, may I ask what state you’re in and how much it cost pleaee? I live in Sydney but travel often to Canberra and SE Qld with my husband for work. Thanks
Fellow self-diagnosed ASDer here (I was formally diagnosed with what used to be called ADD back in the 80s). I'm coming to the realization that Aspergers/ASD is an important part of my life story, and it really does explain those "broken" parts of me that my ADHD diagnosis just never helped with. My wife is also starting to suspect that she may be on one or both spectrums as well, and while I'm not in a position to diagnose her or anyone else, I'm starting to agree. In some ways, it may be easier for two Aspies to get along in a close relationship than for a NT with someone with ASD (which I now believe describes my parents' relationship). Not saying that they won't have their communication issues -- my wife and I SURE have had ours at times -- but I think there can be a sort of mutual understanding, even when neither partner even realizes yet what they have.
@@CHChris That's been recognised as the Double Empathy issue: Neurodivergents can communicate well with each other just like NTs can. It's when you try to mix and match NT/ND that you get the most problematic communication issues.
I didn't put it together about the trigger of having a stranger deny your experience. My husband and I used to have TONS of misunderstandings based on my tone and facial expressions etc. He has ADHD and would be more quickly offended or "run with it" instead of stopping and questioning if I meant something another way. I simply didn't understand social cues so I will use a certain tone/expression and wonder why I was misunderstood. Being married for close to a decade has really taught me a lot about semantics and nuances of socializing. 😂 I don't understand why someone would purposely pretend to have such a diagnosis, but that's the claim of a lot of psychologists. I've met good psychologists too though, that are understanding and yet careful to diagnose accurately. But it can take effort and time to find them. Of course with ASD it's much more stressful than just that when it comes to opening up to a new person and explaining yourself in a way that makes sense to others. I was also raised to be a people pleaser. So I'm an odd mix of saying inappropriate things due to not having a natural filter, but also I'll do confusing coping like smiling when I am uncomfortable, and yes masking to try to help make others more comfortable around me. I'm frustrated sometimes that I don't have a diagnosis, but I already have much stress in my life. I'd hope if I ever do get one I can have therapy and just sort of ask them to be able to explain to me with time, if they agree I am diagnosable , or not. I feel 95% sure I am. (Never 100% because to me that's not logical). 💓
Nobody who was 100% mentally well and neurotypical would "fake" having a diagnosis, that's the way I see it. Even if their self diagnosis is wrong, something else is going on with them! And if they're actively "faking" something, well, the motivations behind that can't be healthy and they still need help. I don't know why that's so hard for some people, especially psychologists, to grasp D:
I agree that meeting other autistic people (online, in my case) was a super important first step. I found a smaller (at the time) RUclips channel called Mom on the Spectrum and met some wonderful people. Meeting other autistic people and also giving myself time to sit with the possibility that I'm autistic were the two most helpful things I did. If you know right away, that's great, but in my experience, I needed time to gain some self-awareness, to un-mask, even to myself, before I reached the point where I became confident enough to start the struggle to seek a formal diagnosis.
I love Mom on the Spectrum! I ordered the ear buds to help me on the school bus. I understand what you mean about self-awareness. Even a year ago I would not have been able to answer the questions on the AQ test. I wasn't ready to know yet.
My diagnosis has come in bits and pieces over the years. Up until I was about 3 years old, I looked and sounded like your typical baby or toddler. At 3 years old I started going mute, I didn't lose any of my vocabulary, but I didn't talk as much as I had before. My mom talked to our pediatrician and he said that I was just shy or quiet. I struggled more in middle school and high school than I did in elementary school. I didn't graduate from high school because I just couldn't handle the sensory environment of constantly changing classrooms. In 2009, a friend's little boy started going through the diagnostic process with their local school district. I wanted to understand what Gus was dealing with, so I started doing some research and it resonated with me, but when I talked to those closest to me they didn't see it. I got really sick in 2010-2011 and didn't have the energy to mask the way I had been. In 2017, my grandma died and we were planning her funeral service and realized that I would not be able to sit with my mom, because she would be sitting with my grandpa and her siblings. As we were all talking and planning, the fact that I might be autistic came up and they agreed that I fit the characteristics of an autistic person. I wound up sitting with the rest of my extended family with my brother on my left at the end of the pew and one of my mom's oldest friends, Aunt Theresa, on my right. They helped guide me through the funeral mass and helped buffer me from all of the none family attendees. We as a family, we agreed that I am autistic, have severe sensory processing disorder, and am semi-mute. But we didn't know where to go from there because there aren't very many places that do assessments on adults in our region. The ones that are out there don't take my insurance and their waiting list is years, not months and we can't afford to pay out of pocket. A year and 3 months ago, my psychiatrist changed and during that first appointment with him we were talking about my challenges including my spacial awareness problems and he asked me if anyone else had suggested that I might be autistic. He had previously worked with autistic kids, but he couldn't test me and give me a formal diagnosis because it isn't within the purview of the clinic that does my mental health side of things. After that appointment, my mom found Hunter Hansen on Quora and then found him on here. From there it has been finding other autistic people on here and finding ways to explain things to myself and others that I didn't have before.
I found supports that were not from mental health providers. You might be able to find help for sensory processing disorder through physical therapy and/or occupational therapy (it's not about employment...) providers. I had an important talk with the sensory processing therapist who was reluctant to work with me at first because she said most adults just wanted to be fixed during their sessions, and I had to assure her that I would do my homework , whatever I had to do to feel better! It helped a lot, and I still use aspects of the sensory diet she gave me. Spatial awareness can also be improved by working with a behavioral optometrist and/or natural vision improvement teacher.
Excellent video. I like the text on screen and your authentic expression of emotion. I agree, finding the community was the most valuable experience for me. I don't need a formal diagnosis personally and would find the experience unnecessarily stressful. It was essential for my son and a couple of my friends though, in terms of school, work and personal validation. One of those friends suggested I go for an assessment years ago and at the time I thought she was crazy 😄 Sometimes we don't see ourselves the way others do and she was obviously better informed than me. The realisation came at a pace i could handle, i think there's something to be said for that too.
This human is so PRECIOUS, I am so grateful your videos found their way to me! They have already been so helpful to me, I just diagnosed myself a few months ago around the time I turned 30, things just really started to sink in and make so much more sense. I have already begun to tell my family and friends, but I don’t want to annoy people by talking about autism all the time, its crazy how many moments everyday I am still like ‘OH so thats what this is?! That’s autism too??”. This video in particular is one I have been looking for, I have been trying to determine whether a formal diagnosis is necessary or beneficial. I still haven’t come to a conclusion but this makes it even easier for me to own my new found identity more fully without one.
I was just talking about this to my family, who don't believe I'm autistic, of course(not that they know anything about it.) They say self-diagnosis isn't valid and that I need to get a formal diagnosis. I explained to them that it's not that easy for me. Misdiagnosis happens all the time. They just don't understand at all.
This, this, this this ALL of THIS! The more I learn to understand myself the clearer this becomes, but I still struggle every day to feel like I “belong” here, or that I have any right to even try and “include” myself. Though it doesn’t help that my family can’t/won’t see it because I’ve “adapted so well” (masking is like part of getting dressed in the morning), and I can’t be THAT autistic if I can “cope,” because I’m “not like so-and-so who is autistic” and it just makes me feel so small and invisible because I don’t even feel like I’m coping at all.
I so totally relate to exactly what you said as if I wrote it myself! Family is the hardest! (Holy moly, I started to give detailed thoughts. When I hit 1000 words I realized I need to dial it back as to not hijack your post lol) happens so often!
My family repeatedly says things like "That's just Cory, he's just like that" and I'm worried that once I tell them, they wont believe it because after all, thats just how I am as they say.
@Morbatx I am very fortunate that my family does believe me, however.. to the “I must not be very autistic, because I can cope so well” I can only say YES EXACTLY THAT! I also looove the “you are not that autistic because you are not like….” They don’t see what happens when I’m home, they don’t see the meltdowns or the shutdowns, they are not here for the days I have to recuperate from the party I went to. And to you I say, you are not alone, your experience matters, you matter!❤
Your videos always make me cry. I'm 56, and for the first time in my life I finally feel like someone "gets" me. I first found your channel when I was looking for information to help me better understand my students. I work on a special ed bus, helping my friends feel safe going to and from school. I'm given the students with autism, who are mostly non-verbal, because I seem to know what they need. Anyway, that first video I watched caught me completely off guard. You were speaking my language and it scared me. I didn't watch any more for a very long time. However, I did subscribe. Then two weeks ago I watched Friday's posting and cried again. I had been feeling so alone and misunderstood, but you were articulating exactly what I feel. Things I had trouble expressing. I binge-watched yours and 3 other people's videos all weekend long. I finally took the AQ test AND listened to a lecture by the guy who wrote it. I scored rather high (I always was an over-achiever 😉). One of the best things that came from your videos is that I now understand why I do some of the things I do - that were bothering me that I still do them. Now when I do them it's not so troublesome because I now understand why. I am much more patient with myself because of it. I thought I was pretty patient with myself already, but now I am more so. Thank you for sharing your experience. You've made a huge difference in my life.
I've been so scared to walk into a drs office and start the process of being diagnosed. Because, what if I'm not. What if I'm just like one of those annoying kids on TikTok faking shit for attention?
You already know better than anyone else whether or not you’re just doing this for attention. ..and remember, at the end of the day, an autism diagnosis is just an opinion based on a checklist of criteria. It’s not like there’s a blood test or some other way of objectively diagnosing it. If you feel you got misdiagnosed, you can always go get a second opinion. In the 90s, I had several shrinks tell me that I wasn’t autistic because they were completely ignorant about how masking works and how broad the spectrum is. They were dead wrong and it caused me years of unnecessary hardship. Id recommend trying to get a diagnosis from someone who has real experience with autism, not just a regular psychologist. That way you can feel far more trusting of the result.
The whole tiktok kids faking it is waaaay overrated. People just want an excuse to bully growing teenagers. Trust yourself on this one - you know yourself better than insecure people online who have never met you. (:
Even though I've had a diagnosis from a private psychologist working with an autism specialist, I still feel like an imposter when medical doctors dismiss my experiences. Apparently I can mask well enough that they just assume I can't possibly struggle with the things I struggle with. It's incredibly disheartening and makes me avoid doctors because I've had so many that just don't believe me.
Thanks for making this. I'm due to start my assessment within the next weeks. I've filled in my intake forms months ago and should be near the top of the waiting list by now. I'm 44 and I'm terrified of being labelled normal. I know I'm autistic. It fits, it's the only thing that makes sense after struggling to fit in for decades. I'm going to an organisation specialising in adult autism and they currently see more women than men but still, that fear persists even though I know they will take me seriously. Maybe it's because I'm struggling in work with feelings of inadequacy on top of the daily struggles we all face as auties and aspies. I don't know, but I'm definitely saving this video. Thanks you!
I'm a bit envious of you. I've been searching for months and can't even locate a support group in my area, or even some kind of acknowledgement that asd adults even exist, never mind diagnosis. I found someone who does it a few cities over and she said they've NEVER diagnosed an adult woman pretty disheartening
I get u brother. I was different in school. I learnt piano instead of football. Piano is still my highlight of school. I was looked upon as pretty weird coz I didn’t like to play football or sports. I ended up getting bullied and school was a nightmare . I got diagnosed a few years ago but I felt like an imposter too. But they said I’m autistic. I just thought I was into different things, like fictional story’s were boring. Read an encyclopaedia or Guineas world records and my ears would prick up. But we are all wonderfully unique wether we are asd or not. We just got to be kind to each other. Kind regards
@@mikiethespike Same! I was lucky to grow up in a family of professional musicians. But like you, I’m also OBSESSED with research. I also used to just sit and read the encyclopedia for fun. 😂 I absolutely have to learn new things every day.
Thank you for this video. Your timing was incredible - I found this an hour before my appointment to go over my assessment results. I was so scared I would not receive the correct diagnosis for exactly the reasons you articulated. Your video really helped me go into the appointment feeling a little less anxious. When she told me that an autism diagnosis "fits", I was so relieved. I was confident in my self-diagnosis, but it was a relief for that to be validated.
I set up the process for a formal diagnosis of ADHD, and then cancelled for precisely the reason you put forth. My life experience has taught me not to trust the system. And so I’ve been dealing with it on my own (and with community) and doing a much better job of handling it. My primary care guy trusted me and said if you think this is what you are, I’ll give you a prescription. But I didn’t go through the full formal diagnosis thing with a psychiatrist. That was a Bridge too far.
My first formal autism test was a misdiagnosis. I had a lot of anxiety from my time in the military, so that all caused some confusion. It was a depressing time for me after that, being invalidated and all. I ended up reading more into the DSM-5 and other content regarding autism and autistic traits which only further validated my thoughts on the matter. Eventually, I was able to get another test for autism and was diagnosed. It was made a lot easier after educating myself more on it all. Big relief though.
Thanks Paul. I felt I needed a formal diagnosis to help me address a very painful experience at work. Like you I had read the textbook and couldn't relate to the criteria as they were presented in the text. The person I saw was in no doubt about my autism and her letter helped me a lot. Since then, as I've disclosed to a few people, a good number of them said they weren't at all surprised. I gradually making contact with other autistic people and, for me, it's helped to find other things in common with people, in addition to autism.
I received my formal diagnosis of ASD a few weeks ago and I’ve reached the stage of acceptance. Thank you for your content, it really helped me during the time when I first suspected that I may have Asperger’s up until now where it is no longer is a suspicion. I definitely shared the same worry of my internal struggle not being seen but during my assessment I was surprised at how much I struggled to deal with some of the challenges, especially the one related to storytelling.
This totally resonates with me. I'm diagnosed ADHD combined, and i'm pretty sure i'm on the spectrum. I scored a 40 on the AQ, and i've been intentionally working on my social skills for a large chunk of my life. I'm 40 years old btw. I did my intake appointment for an autism assignment and neurological testing for my ADHD and the lady said she wasn't getting "autism vibes" to my other psychologist. She told me i might not test as autistic because i've worked on my skills so much and it might be my ADHD + my personality that "looks like" autism. 🤷♂️ we're still going to go through the whole process though.
I’m going through the formal diagnosis process now, and this is like hearing what has been going on internally for me for months. The identity crisis has been real, but this video has encouraged me to seek out and participate more in autistic communities. That feeling of being invalidated and not believed is so deeply internalized, but I’m so grateful for channels like yours where I finally feel like someone is putting into words the things I’ve been trying to with other people for so long.
I've got my first appointment with the autism service on Wednesday and I'm terrified that they won't believe me because I've been struggling so much for the past decade and I've finally worked out why. I can definitely relate to people not believing my self diagnosis and how getting a formal one won't change their minds either. They think people can just answer whatever they want to get the diagnosis they're looking for, so they'll just think I'm manipulating the results.
I was diagnosed by a leading specialist in my country after prolonged assessment (2 weeks in clinic because of my excellent masking, followed by 10 weeks specialised psychotherapy setting for ASD). So they could seen symptoms, which nobody had seen in an ambulant setting like overloads, meltdowns, my daily rituals, my irritation if anything changed, my sensory needs, my social behaviour. This helps me twice: 1) with my perfect masking and therefore ideas of imposter syndrome, 2) with anybody (including professionals) who is saying "but you look not autistic" etc. Nobody can question this diagnosis and this is really great!
You know, I thought to myself, Inknow I am but I’ll watch anyway and this was so great to watch. Thank you. I am currently in the process of trying to get a diagnosis and just had someone basically tell me I should have a true diagnosis before I say I’m autistic which was very frustrating because I know I’m my heart of heart that I am. I want to definitely join the virtual group and world like to find one in NYC
thank you,thank you. This is so comforting to me. I actually did try once to talk to a therapist about this and she was so incredibly rude to me. I relate so much to the aspie people on youtube and the books, I can really just accept this is who I am. It is just who I am.
You express exactly the fears I felt very acutely when I went into the diagnosis process for ADHD a year ago. Your words just reach right into me and it feels hugely validating after the fact. Back then I was afraid of not only the things you describe, but also of being seen as silly for having those fears
I self-diagnosed on the spectrum when my son was formally diagnosed by his school district. There’s practically 100% overlap between us. When I expressed interest in formal diagnosis to my psychiatrist, she shot me down inside a minute. “Even if you are autistic, you’ve clearly learned ways to deal with it; you’ve managed to go on to have a productive life” I cannot express why external validation means so much to me, but 13 years later, I’m finally getting evaluated today. Aaaand I’m scared. A quick internet search brought me here. Your video is helping calm me down. I have a feeling I’ll be a mess this afternoon no matter what the diagnostician reports.
I was formally diagnosed with Level 1 back in July, and even though it did bring some form of validation that my suspicions were correct, I also felt a bit of 'Imposter Syndrome', like I wasn't "Autistic Enough" to qualify or claim it. I also almost wasn't diagnosed initially after my in-person testing, because I only checked one of their criteria boxes - it wasn't until I e-mailed them extra info that I felt either didn't get elaborated on enough, or brought up at all during my screening that they started favoring a diagnosis. I was also tested for and diagnosed with ADHD-Combined, Moderate...so I have that fun as well...lol. Thank you Paul, for putting yourself out there and sharing, watching videos like yours has been tremendously helpful.
I technically have a diagnosis from my Psychiatrist on the basis of the diagnostic criteria alone, but she did recommend I go and get an evaluation from a professional who does specialize in autism anyway just to be absolutely sure. I’m worried I’ll end up dealing with somebody who has some ridiculous reason why I couldn’t be autistic because of their belief of a particular facet of autism doesn’t quite match up, likely because I’m masking, and I’ll end up having to go get multiple evaluations as a result.
Oh the "aren't we all a little autistic?" reaction! The very first person I tested the waters with on mentioning that I believe I'm autistic went this way. I wish I'd fought back, but it was a work acquaintance and I didn't want to let this become a wedge between us, as I have pretty much distanced myself from most of my coworkers on a social level. Of course, I'm doing the very autistic thing of replaying this in my head ad nauseam, even though it's done and can't be changed now. The journey continues...
Thank you so much Paul. My heart goes out to you for all the times you weren't understood or accepted. It was clear how much that first moment still means to you.
I still want an assessment because I think I am ADHD also and treatment for that could help me with going back to school and a career. But seriously everything you talked about in this video I so relate too. Always felt like an outsider or an "other" or like an alien. And then I found the autistic community and finally felt like there were answers and like I felt my people. I've done a ton of research too, on both autism and ADHD so I'm not going in it completely unaware of what it is and why I would or would not fit. Thank you for this video.
Paul your comments about finding a support group on line helps me see thats what I'm doing each time I click on your videos. It helps me feel understood. I appreciated your perspective about those who will not believe a self diagnosis or a clinical one.
I'm a clinician working for the national health service diagnosing adults with autism. I've felt uneasy for years about 'pathologising difference', quite frankly I dislike sticking labels on people. I avoided seeking a formal diagnosis myself until it felt absolutely necessary. It proved to be the only way to access the support I needed and have workplace adjustments implemented so I didn't have to quit the job. Workplaces have become progressively more challenging for neurodivergent people, hours are longer, breaks shorter, the commute more stressful and we're expected to multitask. Many of our service users have been passed around different mental health services for years before they reach us, and really struggle to cope with mainstream employment or education. I guess I'm saying that yes I agree we SHOULD be able to self identify as autistic and be believed and accepted, and simple accommodations made. If only! ( Your channel is brilliant Paul, I often signpost my service users here, thank you)
This was THE very best video for me to watch. I am a married 42-year-old mom of 2. I thought one of my children was for years, but 3 days ago I decided that a video I had seen on RUclips, (my mom prompted me to pursue) rang too true and took an assessment online. EVERYTHING MADE SENSE. A lifetime of experiences and internal daily struggles made sense and I wept from the relief of it...I went to bed with the joy of this realization and ALL the connections. The next day and until I watched THIS video I was so weighed down by how this couldn't be and did 5 more assessments that continued to point to how much I had masked and that I was continuing to come out with high scores indicating I was on the spectrum and with more of the Aspie realm. I know-I know I'm still wanting to figure out what term best fits or how it is supposed to be, but that best describes where I am at for now. This video has now made it finally freeing for me to settle on this, and not feel the need for all the reasons you shared to get a formal diagnosis which wouldn't even be possible for us at this time. THANK YOU. It has made me emotional for the 2nd time since learning about this and my entire life has now come into focus, every single problem that I have not been able to resolve and every single roadblock now has a reason. And because of this video, I can finally settle the war that began not 24 hours after this life-changing revelation, and it was shared in the right way. I can't thank you enough for this video. It helped me to accept it. Today I will accept this.
I appreciate your videos SO MUCH! I want to get diagnosed for "hard proof" to present in case I am ever challenged when mentioning this to someone. Funny enough, it's kinda rooted in not being believed as a kid on odd things that I wasn't able to prove. So I've learned to get my facts ready and have all info on hand just in case. Also because of this, sometimes I even doubt myself on things that there's doubt on. I also got emotional when you were talking about how welcoming the community is and discovering odd quirks you just thought were a "me thing" is actually shared by other people after all. It's happened so many times... it's still a little surprising, but not as much as a few years ago.
I guess those doubts are picture book symptomatic for 'cognitive scars' from multiple incidents of gaslighting endured... as far as I'm concerned, I'd assume to be taking 'jerkishly' cynical turns on registering quite a lot of NT | npc | normie 'emotionalist' antics now... [..] but be latter as it may ... and you be happy, and fine at sincerily possible best.
Let's talk about the millions of people that were handed a lazy autism misdiagnosis under the terrible DSM-4 umbrella, subsequently diluting what it is to be autistic in the clinical setting, making it tougher to get effective treatment. Thank God they corrected this with the DSM-5, but the damage was still done.
Right. I still question the diagnosis sometimes for my child, but I think it was correct, but also they ignored symptoms of other diagnosis that affect her much more greatly. The irony being that when we have probed about it; we are almost always told it doesn't matter. That she will get the same treatment for symptoms so adding in ADHD or turrets etc won't change anything. I don't even agree 💯 but it's a common attitude. So I can see where the value of getting a dx is diminished by "professionals" that don't really have passion for their work and/or are just bad at it. It's not to be mean, but we are all human. People are many times too blindly trusting of individuals due to a degree that has their name on it. I know plenty of people with degrees ranging from AA to MD and PhD that are close friends and family, no offense to them....but the degree *REALLY* doesn't mean anything more than the fact that they put the time in. And even then...there are ways to short cut it.
...or the millions of us who were lazily MIS-diagnosed, drugged, and ended up with severe PTSD because we didn’t know we were autistic until our 30s or 40s.
@@sixthsenseamelia4695 Thanks! I lived in Che’s hometown in Argentina for a while and one day it just clicked. 😂 I see what you did with yours too btw. Lol
Thank you so much for talking about this. I’ve been misdiagnosed SO many times over the years. Nothing ever really explained what was wrong with me except for ASD. I’ve been “informally” diagnosed (basically doctors agree but I haven’t had the formal assessment) and really need to get assessed to get accommodations. But I just don’t want to spend all this money to be given another misdiagnosis.
This video is such a relief for me to watch. I worked full time in an office for almost two years until I just couldn't keep up with the constant social misunderstandings and issues that I had no understanding of. I lost my job and finally decided to get evaluated for the lifetime of struggles id been having and the clinician had me read from a picture book and play with a toy before deciding I didn't have autism because I didnt "display enough stereotyped behaviors." I was so upset when I read that, because, like he says in the video, I'd felt like I spent my whole life trying desperately to explain how much I struggled only to be dismissed/unheard. I'm certain that if the clinician had experience evaluating adults (especially adult women), the result would be different. It's so hard to spend all that money and go to all that trouble only to feel more misunderstood. I'm so happy that self diagnosis for this is becoming more acceptable, because I really want to find some explanation and some form of community even though my initial go at formal diagnosis didn't go well.
Oh, a video on the reason why I am yet to see a psychiatrist at all, even before discovering ASD and identifying with it. I just knew that I am somehow different enough that not every doctor could understand it. Also I recently lost a friend group who didn't believe that I might have ADHD and my best friend out of that group said I need to have a paper before talking to him again, so ignorance is real. It was hard to get over such a betrayal, but I'm kinda used to it at this point.
do you want to expose that group on my Autistic Groups Fairness Watch site? Which exists because there is a serious fight between nice and nasty communities, that this video's jaunty confidence does not reflect. What the wrongdoers can do needs logically discrediting in the open
When you said about your experience with a support group, I just remembered the first time I joined AFTI meeting, also made me cry a bit. Even having a formal diagnosis (wasn’t the best experience to go through) I had such a deep impostor syndrome, I was terrified I was not autistic enough and people would notice it and yell at me for making up diagnoses for myself and kick me out. But it immediately felt like home full of people I had a lot in common😊
Thank you beyond words. I’ve suspected since 2008 that I was on the spectrum and been watching a lot of videos the past fortnight. I have found your channel and a woman in Texas channel so incredibly helpful. I was diagnosed with BPD in 2007 and PTSD and 11 months ago it was changed to CPTSD & ADHD. I intrinsically felt something was still missing. Everything you’ve said in all the videos had resonated with me or I have noticed in my brothers. I genuinely appreciate you being so honest as. Open about your fear of diagnosis or moreover the fear of being misdiagnosed because you’ve gotten so good at adapting and masking I was concerned about the same thing especially as a female who has devoted their life to personal development, healing and psychology and understanding people. I’m feeling very emotional right now but grateful and hopeful, so thank you. I almost never go on FB but have signed up to the support group.
This video is so important to me. My dad is very much against me researching asd or seeking a diagnosis. I have an evaluation next week w a private psychologist. I may need to prepare myself for the possibility that my dad still doesn’t accept it or believe me if I leave with a medical Rx. And now I know I can join zoom meetings! How nice!
On the one hand, you have to process the realization that you are definitely NOT 'normal', and go through that painful life review... and if it was not enough you also have to justify yourself, and convince friends , doctors! So no I'm not jumping into the diagnostic procedure. Guess I wouldn't stand feeling lost AND invalidated at the same time. Self diagnosis leaves you in a very vulnerable place - even being a very assertive, solid kind of personalty- and not just anyone can be tolerated around me these days. And yes, your channels the greatest available help at hand... thank you .
I was formally diagnosed this year, and it was both stressful and extremely validating. I was so worried that I masked too well, and that yet again I would be told I didn't have the problems I was going through. I matched all of the points of the DSM 5, and was 99% sure I had it, but that 1% caused some rather intense imposter syndrome. I don't have a problem with someone self diagnosing after doing due diligence with their research. When they do not do that it can become a problem. Diagnosing yourself with something you don't have can be quite problematic, and might make it harder to find out if you do have a problem. So be careful if you are going to go that route.
Dear Paul, thank you very much for these insights. I first went to a clinic for diagnose. They said it was compulsive personality disorder, but I were free to get a second opinion. I emmediatly left my online asd friends group because I thought I had no right to be there any longer. But I could not find myself in the personality disorder thing. So I was busy searching for a special autism diagnostic center (not an easy task in germany) and had to wait vor 1,5 years for the appointment. Then I was diagnosed with atypical autism. I felt released and things startet to get better. My husband, my collegues and even my family became aware, that my struggle with sensory overload (sounds and smells) were real. And that it was not meant rude, when I got totaly frozen or mad, when plans suddenly changed. And I learned more about my weaknesses. Bevore I thought that I just was not a good person and tried so hard to be like anybody else. No wonder the clinic thought it was compulsive personality disorder. Now I prepare to meet the monthly asd meeting in my area. I was very nervous about going there. But after watching your video, I am happy to have the chance to meet people of my kind in reallife.
Thank you for this channel ❤ You say everything I need to hear. When I was a kid, all I wanted in life was to find someone who think the same way as I do, someone who understand…
This has really helped it sink in. I've been in denial and very suspicious of myself even while the results keep rolling in and I'm hitting all the criteria, professional opinions, and diagnostic process. I even went to my first meeting, attended live seminars, took classes, listened to so many ppl. It's been a busy year. But what is said here has really struck me. I've never been believed, why would I believe it now? I got it on a piece of paper and after an hour I was still going really?! Is the search really over? It's been 30 years... Thx for this. Looks like 30 years is right on time for me. And for anyone else in the same place as me and having trouble your time might be now too. Crazy right?!
The first of your videos that I watched was a revelation to me. Especially reading the comments. I felt a real connection with people who understood things I did that others usually laugh at. Thank you for creating the videos and encouraging respectful, supportive comments. It has made a real difference to many people already 🙂
Thank you so much for this video... It really surports me as this is exactly where I am standing now. I've had a burn-out in 2017, and most of the therapeutical origin was set on my being born and growing up in war times, so I have been clearing traumatic traces. Now, that I get back on my feet and in the proess of launching my own business, I get black-out sleeps and exhaustion from interracting... which of course reminded me of 2017, but it is pretty clear to me that I don't have depressive symptoms. I am discovering now many autistic signs I can recognize in my personality, and past memories that date back to my very childhood fall under a totally new - and far more consistent - perspective. I am so grateful you and other heart-centered people in the spectrum are allowing me and others to understand ourselves better. I have decided to go through the diagnosis process.
When I started my journey to get more clear about myself there were a lot of signs (and test results), that I could be autistic. I wanted to get an official diagnosis to be sure about it, but of course, it took some time. In the meantime I found very good and helpfull information and support in the autistic community online. But then my diagnosis was ADHD, influenced by giftedness (this made it look more like autism). I was told that there is much common ground in the different neurodiverse expressions, that’s why I found myself in autism as well as I do now in ADHD. Some difficulties I have are much better now under medical treatment (esp. the overstimulation and emotional instability) and therefore I‘m glad that I seeked for validation. And a lot of the challenges I have to deal with are easier with the knowledge that was provided to me in the autistic community (e.g. here) and I‘m very thankful for that. And besides a lot of neurodivergent people have both characteristics anyway 😄 So to me there is a good reason for getting diagnosed - it could be something else (too) with different therapeutical consequences. It‘s not about needing validation from the outside, that you have a right to be you.
my evaluation starts next week and I'm honestly so scared of it that they would not take me seriously...and that I would be left alone again to deal and "cope" with it myself if this goes wrong. Especially after all the work I put into considering other options aswell just to make sure that there isn't something else that might fit my struggles (but also talents) better. I just want to be taken seriously and get the help I need, I want to be able to not be exhausted and tired every day and to be able to do the things I love. Thank you for making these videos. Thank you for making this specific one.
1 year later: evaluation did in fact not start the week after (some misscommunication) am still waiting for it :/. had somehow forgotten about this video and rediscovered it right after I recently made the choice/my conclusion that I am, in fact autistic, but that I'm making a difference between feeling, seeing, perceiving myself and my past as autistic AND the "clinical" version of autism, which an official diagnosis would be. It actually helped me be less afraid about whatever judgement they are going to make and feel less helpless. Afterall I DO know myself best and I do think there is a very good chance that they won't be able to see it because of alot of factors that make my situation complicated and we haven't exactly found a way yet to look into someones brain (not meaning physically)
Oh how I appreciate what you are doing! You really are spot on about worrying that people may dismiss the idea totally. I am advocating for my 8yo. He scored very high on the probability screening. He won't meet with the doctor until April & I feel so helpless in the meantime. I told his teacher & another member of faculty & they waved off the notion. They said, "Then he's probably a genius." I appreciated the sentiment but I needed more empathy. Five months is so far away. Idk if I should even tell him or what? When he was 6, he told me matter of factly, "My brain is Medium." I may just run with his theory for a few more months❣🏃🏾♀️🤫
Exactly my experience! I felt instant identification with the autists and their stories and symptoms in the RUclips, but when I read a textbook (I think it was the same as yours) and became dubious and alienated. The boon was so full of disability and restriction and deficiency and obsession and all this pathological language, not like I felt - even though I had been depressed and anxious and suffering from all kinds of things. Also I felt somehow fake, not having been diagnosed as a child - even though nobody was diagnosed with high masking autism when I was a child in the 197Os.
Awww Paul, I teared up at the same time as you! I’m still waiting on an assessment/diagnosis and I am finding life incredibly hard at the moment. But your video has really helped me to look for a support group that welcomes people like me in limbo in. Thank you for this video, it really cheered me up and helped me ❤
this really helped. i recently went to a neurologist to receive a diagnosis but he said i was too bright, smart, and KIND to be autistic. he got angry when i mentioned that research about autism in women is limited and made me feel guilty. i apologised for invalidating his degree and he said “oh that’s so kind that you considered my feelings” which only made me cry more and say “i can’t tell if you’re being sarcastic or not” which he used as evidence that i have apraxia. i don’t understand that. i felt as though nothing i was trying to say was being heard. he acted as though he knows me more than i know myself.
I put off a formal diagnosis for years because, until a relatively recent change in certain rules and regulations regarding getting a pilot's licence, it would have been and end to the only bit of hope I feel I have in my life and my existence would seem pointless with nothing to aim for. Since the change to these rules and regulations that allowed people with an Asperger Syndrome diagnosis to qualify happened I decided I would take the chance with a formal diagnosis. I was recently formally diagnosed with 'Autism I (Asperger Profile)', which I take to mean an AS diagnosis and therefore my hopes and dreams are still valid. I have told a few people and I don't mind mentioning it when applying for jobs. To my mind it's a case of 'never be afraid of the truth' and 'truth will set you free'. In a way, I am set free by the diagnosis. Apart from a job rejection, people have generally been positive towards me like they never have before. In some ways, I wish I'd been diagnosed years earlier as I think greater understanding for both myself and others may well have saved me from the absolute hell I've had to live through which resulted in nervous breakdown and suicide attempts. In a way, I'd reached the end of the road of life without a formal diagnosis. I think the diagnosis has given me a new lease of life I have yet to discover the fruits of. Maybe, one day, I'll get that pilot's licence.
I was fortunate to be able to be assessed during a 3 month residential dual diagnosis program. I'm not sure if a "formal" assessment process would've produced a dx. Definitely wasn't willing to spend the $1700 aud to risk not being diagnosed. With the residential stay, not only were the psychologist and psychiatrist able to see me in day to day life over three months, but they also saw me at my "worst" (e.g meltdowns, sensory overload) these combined with three months of weekly one on one sessions with the psychologist and two groups per day, it allowed them to see my "autistic self". It was quite the bonus of the program, had no idea they could do it, my psychologist brought it up (she was super accepting of a self dx, just brought it up as it could help with accessing support) There definitely are a lot of shortcomings with a diagnostic criteria that is based on deficiencies more so than traits, then you throw in years of subconscious masking as an adult and those of us who were "lower support needs" and "higher intellectual capacity" (the ones who flew under the radar as children as nerdy or just quirky), we still have a ways to go with adult dx (and asd dx in general) This is why within the community self dx is perfectly valid!
Never had worry about this. I was dragged before all kind of doctors in Grade 3 and labeled ASD and told there was something wrong me from that day forward in school till I switch schools for high school. I lied to myself though, that told myself that I was normal and didn't have ASD. Masked to make it so but I'm not good at that my true self always showed. Thank you for this youtube channel. My early ASD diagnosis has been a point of shame for me, I've felt alone with if all my life. They sure treat this ASD differently today than they did in 70s.
This is the second time I’ve watched this video, the first time was about 3 months ago. Both times I have had to stop at the point at which you said in the group they just said “welcome home. We’re glad you found us.“ I’ve had to stop the video because of my overwhelming need to cry. I would love to find a group like that. Even just one or two people. I’ve always felt I am the odd one out.
Thank you for making this video- watching this has been validating. I teared up, too, when you said “welcome! You’re home now!” Self-diagnosing and finding the autistic community has been a godsend.
I know this is months later, but thank you so much for videos like this. I’m in my early 60s and see no point in diagnosis. I have coping strategies I use, and friends and family believe and accept me. Videos like yours are so helpful: they have really helped me.
Thanks so much for the VERY valuable work you're doing! External validation has ALWAYS been a problem for me....and darn it, it's time to STOP and just TRUST myself!
I've been absorbing so much content about autism in general and specifically adult undiagnosed high-masking people and despite really resonating with a lot of it I was still feeling exactly how you described yourself at 12:03 For example, when I saw it the other day I was almost nervous to click on your "Isn't Everyone A Little Bit Autistic" video because I inherently knew that the answer was no and I was scared that I'd consider myself to be one of the people that you were diplomatically putting in their place for invalidating the autistic experience. But just a few minutes into that video I found myself subconsciously identifying with your side of the issue rather than feeling like I was the one being 'lectured'. Still I had/have very serious doubts and have been struggling with whether to try and pursue a formal diagnosis, so I was very excited when I found this video hoping that, like so many of your other videos have, maybe this one would contain something that I'd find helpful. This video has literally changed my life, I started crying at the same time you were getting emotional near the end and I'm still crying as I write this. I resonate so strongly with everything you said, and this is the first moment I've felt empowered to be able to say that accepting my self diagnosis is going to be helpful for me, and maybe a formal diagnosis wouldn't be and that's fine so I don't necessarily need to go through with it if I'm scared they would misunderstand me, and that even if they didn't a formal diagnosis probably wouldn't change much anyway. Thank you
When I watch your videos, I am fascinated by the way you break it down for us all. My daughter and son are both diagnosed with ADHD and the psychologist believes there is something else to discover for my daughter. Autism is the next possibility. So like you, I dove in to understand more and learn and got deep. Came out with the online AQ assessment and did it myself, with a high score. I asked my wife to do it as if me, the score got higher. I think I’ll check out your group. Ps. I emote easily and also got emotional 🥹 keep on keeping on! 😊
I'm going for my ASD evaluation in 3 days and I'm extremely stressed out about it. All the worries that you mentioned in this video I've been having. The biggest of all is what if they try to tell me I'm not autistic when I know 100% that I am. It's so important for me to get this diagnosis bc I need begin receiving treatment so that I can finally start living a healthier life. I'm 39 years old and not understanding that I was autistic brought me to my knees of addiction. I'm now in recovery thank God, but I NEVER want to feel like I want to use again so that I can self-medicate from who I truly am. I'm a mother and a wife and I deserve to truly be who I am without having to feel bad about it! I lived majority of my life feeling lost, confused and scared. Finding out about my autism has been a blessing and I don't want anyone taking that away from me! My husband totally agrees with and supports my autism. Which I'm most greatful for so he will be joining me at my appointment. Do you have any extra advice that I can take with me? Thank you for all your videos, they are super helpful!
I've known for about 3 years that I have Asperger's. Before that I just thought I was weird! Since then I've been going through the process of trying to seek formal diagnosis, and I've looked at lots of videos and other information. BUT this is the best thing I've seen so far, and after watching this video I'm now re- thinking whether I'll even bother to seek formal diagnosis anymore. Probably not!
Hello. I just want to say that this video has changed my life significantly. I had always felt a connection to other autistic people but I also thought the same things you did e.g. no one has ever diagnosed me, I'm taking away from people who actually have autism, I'm "normal enough", I'm not "autistic enough". Being able to hear and relate to your experience has validated my existence in a way nothing else has. I felt so many "me too" moments during this video, in the comments, and in your other videos. I feel like I finally have an "answer" and a way forward. I feel like I'm finally "home" too. Thank you for sharing and for all the help you provide in your videos.
What a timely video! I just finished my assessment and I’m now eagerly waiting for the next appointment when we’ll discuss the results. Thank you for the nice insights!
I was first diagnosed with autism a few years ago, and then they had a new assesment with me and determined I was not autistic... :( I really relate to the feeling of not being believed. I was also diagnosed BPD around the same time i was diagnosed autistic first, but now this assessment person things its just bpd ( and ocd was already given to me years ago). I feel really alone in this story of being diagnosed first and then they reassess it and undiagnose you. Its very devastating
My experience with being diagnosed vs. being undiagnosed is that we should be open for each other regardless of a diagnosis. If someone is guessing that it could be autism, this person should not be excluded, but welcomed. So that we all can learn from our different experiences and help each other. Also I agree that people who would not believe you for being autistic would also in most cases not believe you, if you had a diagnosis. Because they don't want to believe or don't understand the concept and are unwilling to open up to this new thing and learn more about it. However I think that calling yourself autistic while undiagnosed can involve a certain risk that should not be underestimated. That is that there are many people out there that claim to be autistic and make a big fuss about it, but they actually have some other diagnosis that is similar to autism in parts. That creates or maintains some misconseptions and prejudices about people who are really on the spectrum. Also it can be dangerous for the person that thinks to be autistic but isn't and just keeps telling himself that this is the only possibility, while there are a lot of differential diagnosis with overlaping symptomps to autism. Maybe the person could get good, appropriate help but denies any other diagnosis than autism and therefore suffers unnecessarily.
I agree, even if you have a diagnosis you need to be careful about attributing every issue or problem to autism. Because it may be you need help with something else, and you’ll miss out on those opportunities.
Differential diagnoses is a dangerous idea, because historically one of the things autistics' have got diagnosed with is schizophrenia. That is the top reason why there is a safety need to establish that you are seen as mentally healthy before you go ahead, and a safety gain in already being connected to an autistic group before you seek diagnosis. To prevent an older-attitudes doctor getting away with saying it's schizophrenia.
The "suffering unnecessarily and not getting appropriate help" is certainly true. It's also true for all kinds of other conditions and even more so I think. From what I've educated myself over the last few months it's much more common for autistic people (especially women) to be misdiagnosed (either self or professional) with other conditions (BPD, bipolar etc.) than the other way round. Or people get a correct diagnosis but a comorbid autism gets overlooked or its symptoms dismissed. I got (correctly) diagnosed with depression and anxiety years ago, but all the other problems I voiced during therapy that could be better explained by autism (instead of accumulating additional diagnoses) were just explained away by "yeah yeah, depression can make you feel that way/have those symptoms". I never got better over the course of a decade until I discovered autism exists in women and suddenly everything fell into place. So everything you say is true but it's even more relevant the other way round.
Thank you so much for the Live event! It was my first time and I didn´t manage to write during the livechat, no multitasking for me XD, but I enjoyed it! Currently I learn so much from all of your videos. I´ll register for the diagnosis process soon (got my ADHD diagnosis 1 year ago, but always thought here is more) and try to keep in touch one way or another. Maybe I´ll join the FB group if I can find the energy. 💖
Thank you for being vunerable and sharing your thoughts as always Paul. I first starting questioning whether or not I was autistic this time last year. Last week I got an official diagnosis, and that helps. However, watching your youtube channel and feeling understand here and with my autistic friends has done more for my soul than a diagnosis ever could. It certainly was the cherry on top though.
Am I afraid of being diagnosed as normal? I would answer that question differently. At six months past my self-diagnosis at 73, and after meeting some members of my tribe, I feel lucky to finally be living a straightforward, confident life, no longer targeted for regular social correction by the people I allow close. I know who I am so I can stand up for me. Thanks for all you do, Paul.
Thank you for this video and your great work! It's very supportive either whether I have Asperger or not. I am an empath and cried when you did at the end. Never belonged anywhere. I had lots of experiences being scapegoated. Like so many pure and empathic people. We all had at some point in our lives the narcissistic brainwashing attempts ( most likely it started in childhood) that we are impostors and don't belong etc. People on the autism spectrum are even more sensitive to emotional abuse and the modelling done by " neurotypicals" with unhealthy projection defenses - who were also traumatised being a child but are in complete denial about it. Will join your facebook group!
The image of Paul looking at the criteria and going “well, sort of? Maybe if I squint?” was both a genuine surprise to me and also reassuring. I certainly do that, but it feels to me like in my case it’s because important parts clearly don’t fit, whereas for other people they probably clearly do but they just feel understandably insecure. The other problem is that I feel very at home with various online communities, but then feel like I must be overstating my commonalities to fit in. I suppose I would be vulnerable to that feeling if I’ve spent my life masking to fit in...ah, but have I, or am I making that up too? The mind boggles. I’m still trying to find my way through all that.
I knew I was autistic after I watched love on the spectrum. and then watching channels on RUclips. so I went and got a formal diagnosis and knew what the outcome would be. and it was true. I am so glad I did it
As I usually feel when I watch autistic people describing their experiences, it's like I'm watching someone talk about the things I never dare to say. I've been researching for around two years now and I'm terrified of a diagnosis being denied and having the one explanation that finally makes sense taken away from me. Thank you so much for sharing!
Even though you can learn from different insights, you will always know yourself better than anyone. There is nothing that they can take away in that. But getting a diagnose might give you access to resources you have not got now and make your life more bearable. Possibly even easy. I didn´t want the diagnose, but right now, I am happy I have it, it feels like the difference of doing a highwire act without or with a net.
Are you me? (And yes, I have lots of moments like that with autistic people, especially those who went unrecognised into adulthood.)
Same here. I stopped the formal diagnosis process out of fear of being diagnosed as not autistic…
@@kaistinakemperdahl9667 yes! Autobiographical books by late diagnosed autistic women are so wild to me, it's like "who told them all my secrets?"
@@mimauka6479 why do you fear the possibility you may not be autistic?
Have you not considered you may be wrong about your assumption?
What gets to me is the people who would doubt my hidden diagnosis would rather believe I’m just a defective weirdo. They would choose a closed negative opinion over respecting a formal diagnosis with understanding and empathy. I’m sending you 🤗 if you’re struggling. I understand. You’re not alone and you matter. 🌻
@Guy Whose opinions will offend you how so?
A thousand times yes. Cast from another psychological angle, that's clearly abusive.
@Guy Whose opinions will offend you all that you know about what doctors do is wrong never should have been allowed to occur the entire Healthcare System is a death trap that's us human diagnosing and treating us humans with ritalin fentanyl surgeries amputations eviscerations the entire construct should have never been allowed by females to exist in the first place. it's only been going on for thousands years it's about time to shut it down
@Guy Whose opinions will offend you yeah most pharmaceutical medications especially for mental disorders are terrible. I have life long auto-immune disease and IBS that was kicked off by some anti-depressants
Your diagnosis is burned into your DNA Y chromosome surging testosterone just like me we have closed vaginas penises lethal weapons mass destruction never never to be used for pleasure ... or male dominance .... 8 billion of us are 1s distinct unique isolated individual separate .... you must learn how to control your mind so you behaviors ... we all have the exact same singular purpose, maintain females and control of the birthright eradicating rape child abuse parental negligence cannibalism. we all have the exact same diagnosis, embedded PERMANENTLY IRREVERSIBLE etched into Double Helix DNA, XXXY sex chromosomes within every ovary of every female two for security in pairs, nestled in their pelvises being incubated 37° C by Chi Life force energy generated by muscles meat motor locomotion engines producing human power momentum purpose ... we're built upon carnivorous monkey killing bloody red meat eating chimpanzees who rape and are countables they have free will controlled by female dominance ... I cannot hate rape terrorize torture traumatize assassinate behead eviscerate play doctor play God playhouse nutrition gynecologist play games of throne build bombs to blow up pregnant mothers into bits and pieces of charred meets that we eat because we're candles we killing each other and can not see reality because our brains are so big susceptible to mental illness when we all get a good night's sleep our brains can reset harmonized and neurotransmitters then we wake up fresh until clarity peaceful to pursue happiness work towards female dominance it'll be fun frustrating and boring ....
I got the results a couple of days ago. The report said there wasn't enough evidence to diagnose. I was devastated until my personal psychologist called me to say 'It hurt me so much to read that, just because of a couple of questions, when I KNOW you are autistic. I KNOW how hard it was for you. You're not crazy. I believe you'. I started crying immediately. That paper was the validation I needed for all the struggle, something to prove there was actually a reason why everything was so hard. I'm still feeling like an imposter, but at least, I can try to hold onto her words when that happens. It's so scary to feel like this, and hopefully we can all find peace in just knowing we are who we are, ourselves.
It took my sister-in-law, after witnessing a meltdown, who is a mental health nurse, to sit down with my mother and say, "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 anyone who knows anything about autism will tell you that after spending about five minutes with them."
I am self diagnosed. Everyone who knew me and read the description said, Oh yeah. I tried for a formal diagnosis only because I could get help with things, like employment. I was in my 50's at the time and they did not want to bother with me. I am in my 70' now and the problem is my sister. She likes to tell people that she has a sister with autism, but she makes it sound like I'm retarded. I am a member of Mensa. She says our parents told her at 14 she would have to take care of me. She should up once every 6 months to say hello. Now I get the impression she thinks she should take over, she shouldn't. She thinks I am worse, I am not. How easy is it for someone to take away your rights? I have supported myself all my life I have a house and a car. And I am retired and happy for the first time.
Exactly. I would worry about losing rights if I got a formal diagnosis. A court could deem me incompetent and slap a guardian or power of attorney on me (If I was rich) or take away 2A rights, etc... I would just as soon fly under the radar. I am in my 60s, recently retired, happily married and self sufficient.
Yeah. I've heard of family members using formal diagnosis against each other. I guess if you have a toxic family system it's better to just cut ties and not tell them personal things.
I am the other way around, I have a formal diagnosis, but people didn´t believe it. I am 49 now, diagnosed three years ago. Especially when you are smart too, a lot of peculiarities are just hung up on that. Good to hear you are happy. Your sister needs a reality check. Your "rights" aren´t rights at all, they depend on how others see you.
You do the same preventitive character defamation to your sister. Just tell people she is not a very good judge and has misjudged you and others in the past and the problems it lead to (doesn´t need to be true, just needs to be out there as an anti-dote to her strong opinions) and then people will need some kind of proof again.. Alas, if you don´t resist, taking the moral high ground, some people will assume that where there is smoke, there is fire and on that basis alone they might want to protect themselves and others, (they might tell themselves) even protect you and take away your comfort and happiness. Remain vigilant, but not to an extent it destroys your happiness, because that would defeat the purpose.. :)
I'm in my 50s and undiagnosed. I've already been deemed incapable by my sister and Dad through having a breakdown from repressed child trauma. My sister's response over the autism was first to say that she finds whatever challenge I have difficult too, and the second was to tell me about her friend's challenges with ADHD and how medication helped.
I wouldn't trust them to listen to me in twenty years any more than they listen to me now. This is why I disagree with the 'disorder' label in the diagnosis - it should be 'divergence' instead.
I wish you all the best. And don't go on impressions you feel - stay solid in your knowledge that you're perfectly capable, thank you very much. Ask them to be specific - where exactly do they think you need the help?
Big hugs 🤗
Your sister is just trying to Gaslight you she is not a loving sister if she behaves that way she's trying to intimidate you this is probably a part of a personality disorder that she has herself try to move away from her and go no contact with her. It's not that easy for them to take away your rights you sound just fine to me. But you shouldn't even have to worry about it. My mother used to do that to me she was a borderline and she used me as her scapegoat child she raised my younger brothers and sisters to be that way later on my brother started to do this to me at one point he followed me into Social Security office and try to insinuate that I had mental problems they kicked him out they could see right through him.
love how you went “oh! got a little emotional there!” meanwhile I am bawling ugly crying.
thank you for discussing your experience. what makes the reach for an official diagnosis, (for folks like myself still trying to get one) even more difficult is the american health care system; which is predominantly driven by profit. it dampens the will to seek medical attention on top of the stigma around autism that already feels like a constant battle. I have certainly come around to accept myself on the spectrum now even more thanks to folks like you. ♥️
I can't thank you enough for this video 😭❤️ I had my assessment about 2 weeks ago... Didn't go well...
To my surprise, there were almost no questions for me, instead it went like this:
1. Describe what you see in a picture book
2. Act out how I would teach a person to brush their teeth
3. Tell a short story using 5 random objects
Somewhere in between these tests I was given a short break and told to entertain myself with the stuff I was given (which as I later found out was also a part of the diagnostic assessment). I just played with 2 little spinning toys.
I was also asked a few questions about friendship and relationships. Something along the lines of "How do you understand, when someone is your friend?" and etc.
It all took just an hour, I thought, that maybe it didn't take long, because the psychiatrist was also my therapist, but when I got the results with "not on the spectrum"...
The thing that upset me most (and also shocked me) was that there were so many inaccuracies in that paper. So many things we talked about before were completely disregarded.
Additionally, I wasn't asked any of those questions and to find out the answers, you either have to know me well (because I'm used to masking around people I'm not close with) or at least ASK! As I said, we have discussed some of those in therapy but maybe she has forgotten? And if she did, WHY DIDN'T SHE ASK!?
The cherry on top was this sentence:
"You're lucky to not be on the spectrum, because of how much struggles the people on the spectrum face"
...
YES. I KNOW. BECAUSE. I. HAVE. THOSE. STRUGGLES. You would know that, if you didn't ignore what I said.
It took me so long to get to this point. So much research was done. I know these things about myself.
The good thing is, I now have more knowledge about what kind of information I need to provide and what I will discuss, because I have the assessment paper as a reference.
Thank you for your channel and your videos, really ❤️ Thank you for doing what you're doing ❤️
(Yes, I understand, that there's a possibility I might not have ASD and have something else, but nothing would be clear, if my words and experiences get completely disregarded and ignored like this)
I'm so sorry to hear about your experience. I've been doing a lot of research finding videos on youtube about women discussing their stories of trying to get their diagnoses and it seems this is very common as the practitioners using the screening techniques designed for 8 year old boys and trying to apply it to 30 to 50 year old women who have been masking their entire lives. (Which applies to any adult spending their entire lives masking.) Entertain yourself with these toys!? Describe this picture book. OMG that sounds exactly what happened to you. And OF COURSE I'm not surprised you would be diagnosed as neurotypical. This is one of the reasons why I will not waste a bunch of my time or money on some assessment done by some stranger who is reading out of a book on whether or not our experience is valid or not.
Please set your therapist straight!
I'm really sorry this was your experience. That does not sound like an official assessment at all. I had my assessment recently. I was referred by my psychiatrist and my psychologist. Both of them were "able" to diagnose me themselves but didn't feel it would be appropriate as they were not specialists. Instead I was referred to a psychologist who specialises in diagnosing women. It was four days of assessments (many hours). This included IQ test, interviews and everything else inbetween. I was scared that my diagnosis would come back negative and invalidate my daily existence. I was also scared that it would come back labelling me disabled and unable to fend for myself. I suspected I'd be on the cusp of qualifying - that it could go either way. But my results was Autism Level 2 (automatic qualification for disability support) and ADHD. I was shocked.
The assessing psychologist told me that she has a lot of people who have self diagnosed and referred themselves for the test. Sometimes those people have been right on the money and achieved diagnosis. A few were given no diagnosis. But interestingly, she found that most were not autistic but were diagnosed with something completely different and unexpected - yet validating and helpful for their onward journey. This is why, if you're fortunate enough to be able to afford it, I would encourage people to be formally diagnosed with a very well qualified specialist.
I'm sorry for your experience and I wish you all the best.
@@duck7237 thanks for the reply ❤️
I'm glad, that things went well for you) and I am looking for another place (the problem is, there's only a handful of specialists, where I live and a lot of them only diagnose children, while some, who are supposed to be experts, seem to be biased and have outdated views on autism, like the psychiatrist I went to)
@@Ouchimoo Thanks for the reply ❤️
It really sucks, that there isn't enough research on autism and anyone, who isn't a cishet white male has a hard time, because most autistic women, poc and people in the LGBTQ+ community usually present differently and mask A LOT. Some "professionals" just decide to stick to very outdated sources, instead of putting in the effort they are supposed to and learning about new things discovered
@@blinobyknovennyy the battle is real. So many unqualified "assessors". I was very fortunate that my assessing psychologist was not only female, but specialised in diagnosing women and was autistic herself. I really hope that you can find the right person for you too and get the assessment that you deserve. Take good care of yourself. x
This channel is my “Welcome! You found us! You’re home!” ♥️ thank you so much for this channel and your videos
I think most of us know who we are. I don’t like the idea of having to be ‘credentialised’ by some professional who has no understanding of the inner experience of Asperger’s. It’s like saying we need a licence to be ourselves. 🌻
You have no clue how much this helped me. What’s ironic is I had that “Me too!” Moment with this video. I always have doubted if I understood myself, and hearing you explain my exact feelings was so freeing to me.
I have been sitting somewhere between feeling like an imposter and being afraid of misdiagnosis since I first realised I am autistic. For a year or so I was going back and forth in my mind and a few months ago decided to go for a diagnosis. I have an appointment in November next year. Feels like forever right now.
It's unfortunate that that's a completely reasonable concern. There's a lot of undiagnosed autistic people out there that either have a false negative or are unlucky enough to get a bunch of other wrong diagnoses that then follow us around forever even as medical science advances.
OTOH, a proper diagnosis can be a very big deal that can make it a lot harder to pretend like it's not a real thing that you've got.
Late life Formal diagnosis was such a healing event; it made sense of my history. It helped me enjoy my solitude as a woman collapsing into her whole story.
This is exactly what happened to me. The first psychologist diagnosing me got it wrong. I asked beforehand if they are able to diagnose an adult female, they agreed. They couldn't!
But I was so sure and tried it again at another institute and they said after 3 sessions " we have no doubt".
The diagnosis was important to get help. I now have a special therapist, who is experienced in working with adult autists. And I now get help and accommodations in the workplace.
And you are right. The diagnosis won't help with others believing your inner experiences.
Oh that's interesting! One question: I thought a doctor (psychiatrist) had to give the diagnosis?
@@surlespasdondine in my country also psychologists are allowed to give a diagnosis.
I stopped my formal diagnosis process a year ago, out of fear of being diagnosed as not autistic. The validation for my life experience I got from studying autism and from members of Online support groups was immense, I didn’t want to loose it, if diagnosed otherwise. I am 39 and I just thought it is impossible I lived so long and wasn’t diagnosed earlier. But, it is impossible for me to call myself autistic without a formal diagnosis, because of two reasons. First, I have a similar experience to you, I was not believed and I tend to dismiss my own experience. Second, I am not a fan of the whole concept self-diagnosis, and I just like to have a paper for everything. So I am torn what to do. Anyway, It’s a great video and I am happy to know you have a similar experience :)
I feel this so much at the moment! I have my ADOS evaluation on Tuesday and I‘m super nervous but excited at the same time. I was really scared about trying to get a formal diagnosis, but having my initial consultation was extremely validating and they agreed that I should definitely go through the process of being evaluated for both ADHD and autism :)
Edit: 17/11/22 - I’ve just been officially diagnosed with autism and ADHD combined type!!!! 💘💘💘
I'll be going through the same thing in January or February, an assessment for ADHD and autism. Sending you good thoughts 😊
I had mine today! Terrified and now just waiting for the phone call tomorrow 😬🤞
@@jazzboots8893 hope it went the way you wanted!!! I’ve just been diagnosed today!!
@@jazzboots8893 and what did they say ?
Hi, may I ask what state you’re in and how much it cost pleaee? I live in Sydney but travel often to Canberra and SE Qld with my husband for work. Thanks
That’s why my GF and I work so well. We are both self-diagnosed ASD & ADHD
Fellow self-diagnosed ASDer here (I was formally diagnosed with what used to be called ADD back in the 80s). I'm coming to the realization that Aspergers/ASD is an important part of my life story, and it really does explain those "broken" parts of me that my ADHD diagnosis just never helped with. My wife is also starting to suspect that she may be on one or both spectrums as well, and while I'm not in a position to diagnose her or anyone else, I'm starting to agree.
In some ways, it may be easier for two Aspies to get along in a close relationship than for a NT with someone with ASD (which I now believe describes my parents' relationship). Not saying that they won't have their communication issues -- my wife and I SURE have had ours at times -- but I think there can be a sort of mutual understanding, even when neither partner even realizes yet what they have.
@@CHChris That's been recognised as the Double Empathy issue: Neurodivergents can communicate well with each other just like NTs can. It's when you try to mix and match NT/ND that you get the most problematic communication issues.
I like to say/write : we like people who are like us ^^
I didn't put it together about the trigger of having a stranger deny your experience.
My husband and I used to have TONS of misunderstandings based on my tone and facial expressions etc. He has ADHD and would be more quickly offended or "run with it" instead of stopping and questioning if I meant something another way. I simply didn't understand social cues so I will use a certain tone/expression and wonder why I was misunderstood. Being married for close to a decade has really taught me a lot about semantics and nuances of socializing. 😂
I don't understand why someone would purposely pretend to have such a diagnosis, but that's the claim of a lot of psychologists. I've met good psychologists too though, that are understanding and yet careful to diagnose accurately. But it can take effort and time to find them. Of course with ASD it's much more stressful than just that when it comes to opening up to a new person and explaining yourself in a way that makes sense to others.
I was also raised to be a people pleaser. So I'm an odd mix of saying inappropriate things due to not having a natural filter, but also I'll do confusing coping like smiling when I am uncomfortable, and yes masking to try to help make others more comfortable around me.
I'm frustrated sometimes that I don't have a diagnosis, but I already have much stress in my life. I'd hope if I ever do get one I can have therapy and just sort of ask them to be able to explain to me with time, if they agree I am diagnosable , or not. I feel 95% sure I am. (Never 100% because to me that's not logical). 💓
Nobody who was 100% mentally well and neurotypical would "fake" having a diagnosis, that's the way I see it. Even if their self diagnosis is wrong, something else is going on with them! And if they're actively "faking" something, well, the motivations behind that can't be healthy and they still need help. I don't know why that's so hard for some people, especially psychologists, to grasp D:
This is how I feel 100%
I agree that meeting other autistic people (online, in my case) was a super important first step. I found a smaller (at the time) RUclips channel called Mom on the Spectrum and met some wonderful people. Meeting other autistic people and also giving myself time to sit with the possibility that I'm autistic were the two most helpful things I did. If you know right away, that's great, but in my experience, I needed time to gain some self-awareness, to un-mask, even to myself, before I reached the point where I became confident enough to start the struggle to seek a formal diagnosis.
That account said meltdowns are shutdowns & having both while chatting on video.
I love Mom on the Spectrum! I ordered the ear buds to help me on the school bus.
I understand what you mean about self-awareness. Even a year ago I would not have been able to answer the questions on the AQ test. I wasn't ready to know yet.
@@sandyg3772 Yes, the ear buds are great. I never leave home without them. Maybe I'll bump into you sometime at MOTS 😊
My diagnosis has come in bits and pieces over the years. Up until I was about 3 years old, I looked and sounded like your typical baby or toddler. At 3 years old I started going mute, I didn't lose any of my vocabulary, but I didn't talk as much as I had before. My mom talked to our pediatrician and he said that I was just shy or quiet. I struggled more in middle school and high school than I did in elementary school. I didn't graduate from high school because I just couldn't handle the sensory environment of constantly changing classrooms.
In 2009, a friend's little boy started going through the diagnostic process with their local school district. I wanted to understand what Gus was dealing with, so I started doing some research and it resonated with me, but when I talked to those closest to me they didn't see it. I got really sick in 2010-2011 and didn't have the energy to mask the way I had been.
In 2017, my grandma died and we were planning her funeral service and realized that I would not be able to sit with my mom, because she would be sitting with my grandpa and her siblings. As we were all talking and planning, the fact that I might be autistic came up and they agreed that I fit the characteristics of an autistic person. I wound up sitting with the rest of my extended family with my brother on my left at the end of the pew and one of my mom's oldest friends, Aunt Theresa, on my right. They helped guide me through the funeral mass and helped buffer me from all of the none family attendees.
We as a family, we agreed that I am autistic, have severe sensory processing disorder, and am semi-mute. But we didn't know where to go from there because there aren't very many places that do assessments on adults in our region. The ones that are out there don't take my insurance and their waiting list is years, not months and we can't afford to pay out of pocket. A year and 3 months ago, my psychiatrist changed and during that first appointment with him we were talking about my challenges including my spacial awareness problems and he asked me if anyone else had suggested that I might be autistic. He had previously worked with autistic kids, but he couldn't test me and give me a formal diagnosis because it isn't within the purview of the clinic that does my mental health side of things. After that appointment, my mom found Hunter Hansen on Quora and then found him on here. From there it has been finding other autistic people on here and finding ways to explain things to myself and others that I didn't have before.
I found supports that were not from mental health providers. You might be able to find help for sensory processing disorder through physical therapy and/or occupational therapy (it's not about employment...) providers. I had an important talk with the sensory processing therapist who was reluctant to work with me at first because she said most adults just wanted to be fixed during their sessions, and I had to assure her that I would do my homework , whatever I had to do to feel better! It helped a lot, and I still use aspects of the sensory diet she gave me. Spatial awareness can also be improved by working with a behavioral optometrist and/or natural vision improvement teacher.
Excellent video. I like the text on screen and your authentic expression of emotion. I agree, finding the community was the most valuable experience for me. I don't need a formal diagnosis personally and would find the experience unnecessarily stressful. It was essential for my son and a couple of my friends though, in terms of school, work and personal validation. One of those friends suggested I go for an assessment years ago and at the time I thought she was crazy 😄 Sometimes we don't see ourselves the way others do and she was obviously better informed than me. The realisation came at a pace i could handle, i think there's something to be said for that too.
This human is so PRECIOUS, I am so grateful your videos found their way to me! They have already been so helpful to me, I just diagnosed myself a few months ago around the time I turned 30, things just really started to sink in and make so much more sense. I have already begun to tell my family and friends, but I don’t want to annoy people by talking about autism all the time, its crazy how many moments everyday I am still like ‘OH so thats what this is?! That’s autism too??”. This video in particular is one I have been looking for, I have been trying to determine whether a formal diagnosis is necessary or beneficial. I still haven’t come to a conclusion but this makes it even easier for me to own my new found identity more fully without one.
There is something about all this, that gives me hope that I won’t always feel as lonely as I have most of my life. 💗
@@kateofkates your comment has also made me feel incredibly hopeful and happy. Thank you for sharing.
I was just talking about this to my family, who don't believe I'm autistic, of course(not that they know anything about it.) They say self-diagnosis isn't valid and that I need to get a formal diagnosis. I explained to them that it's not that easy for me. Misdiagnosis happens all the time. They just don't understand at all.
This, this, this this ALL of THIS! The more I learn to understand myself the clearer this becomes, but I still struggle every day to feel like I “belong” here, or that I have any right to even try and “include” myself. Though it doesn’t help that my family can’t/won’t see it because I’ve “adapted so well” (masking is like part of getting dressed in the morning), and I can’t be THAT autistic if I can “cope,” because I’m “not like so-and-so who is autistic” and it just makes me feel so small and invisible because I don’t even feel like I’m coping at all.
I so totally relate to exactly what you said as if I wrote it myself!
Family is the hardest!
(Holy moly, I started to give detailed thoughts.
When I hit 1000 words I realized I need to dial it back as to not hijack your post lol) happens so often!
@@JeremyBurns I usually just stop writing after the second or third volume of my comment thesis. 😂
I totally relate to this, and also everything Paul said in the video! I feel exactly like you're describing in your comment almost all of the time.
My family repeatedly says things like "That's just Cory, he's just like that" and I'm worried that once I tell them, they wont believe it because after all, thats just how I am as they say.
@Morbatx I am very fortunate that my family does believe me, however..
to the “I must not be very autistic, because I can cope so well” I can only say YES EXACTLY THAT!
I also looove the “you are not that autistic because you are not like….”
They don’t see what happens when I’m home, they don’t see the meltdowns or the shutdowns, they are not here for the days I have to recuperate from the party I went to.
And to you I say, you are not alone, your experience matters, you matter!❤
Your videos always make me cry. I'm 56, and for the first time in my life I finally feel like someone "gets" me.
I first found your channel when I was looking for information to help me better understand my students. I work on a special ed bus, helping my friends feel safe going to and from school. I'm given the students with autism, who are mostly non-verbal, because I seem to know what they need.
Anyway, that first video I watched caught me completely off guard. You were speaking my language and it scared me. I didn't watch any more for a very long time. However, I did subscribe. Then two weeks ago I watched Friday's posting and cried again. I had been feeling so alone and misunderstood, but you were articulating exactly what I feel. Things I had trouble expressing.
I binge-watched yours and 3 other people's videos all weekend long. I finally took the AQ test AND listened to a lecture by the guy who wrote it. I scored rather high (I always was an over-achiever 😉).
One of the best things that came from your videos is that I now understand why I do some of the things I do - that were bothering me that I still do them. Now when I do them it's not so troublesome because I now understand why. I am much more patient with myself because of it. I thought I was pretty patient with myself already, but now I am more so.
Thank you for sharing your experience. You've made a huge difference in my life.
I've been so scared to walk into a drs office and start the process of being diagnosed. Because, what if I'm not. What if I'm just like one of those annoying kids on TikTok faking shit for attention?
More people should ask themselves this
You already know better than anyone else whether or not you’re just doing this for attention. ..and remember, at the end of the day, an autism diagnosis is just an opinion based on a checklist of criteria. It’s not like there’s a blood test or some other way of objectively diagnosing it. If you feel you got misdiagnosed, you can always go get a second opinion.
In the 90s, I had several shrinks tell me that I wasn’t autistic because they were completely ignorant about how masking works and how broad the spectrum is. They were dead wrong and it caused me years of unnecessary hardship.
Id recommend trying to get a diagnosis from someone who has real experience with autism, not just a regular psychologist. That way you can feel far more trusting of the result.
The whole tiktok kids faking it is waaaay overrated. People just want an excuse to bully growing teenagers. Trust yourself on this one - you know yourself better than insecure people online who have never met you. (:
Even though I've had a diagnosis from a private psychologist working with an autism specialist, I still feel like an imposter when medical doctors dismiss my experiences. Apparently I can mask well enough that they just assume I can't possibly struggle with the things I struggle with. It's incredibly disheartening and makes me avoid doctors because I've had so many that just don't believe me.
50 years of fighting with doctors here. Almost all of them specialists in gaslighting.
Thanks for making this. I'm due to start my assessment within the next weeks. I've filled in my intake forms months ago and should be near the top of the waiting list by now. I'm 44 and I'm terrified of being labelled normal. I know I'm autistic. It fits, it's the only thing that makes sense after struggling to fit in for decades. I'm going to an organisation specialising in adult autism and they currently see more women than men but still, that fear persists even though I know they will take me seriously. Maybe it's because I'm struggling in work with feelings of inadequacy on top of the daily struggles we all face as auties and aspies. I don't know, but I'm definitely saving this video. Thanks you!
I'm a bit envious of you. I've been searching for months and can't even locate a support group in my area, or even some kind of acknowledgement that asd adults even exist, never mind diagnosis. I found someone who does it a few cities over and she said they've NEVER diagnosed an adult woman
pretty disheartening
I get u brother. I was different in school. I learnt piano instead of football. Piano is still my highlight of school. I was looked upon as pretty weird coz I didn’t like to play football or sports. I ended up getting bullied and school was a nightmare . I got diagnosed a few years ago but I felt like an imposter too. But they said I’m autistic. I just thought I was into different things, like fictional story’s were boring. Read an encyclopaedia or Guineas world records and my ears would prick up. But we are all wonderfully unique wether we are asd or not. We just got to be kind to each other. Kind regards
Wow. You and I have the exactly same backstory - except that I play guitar instead of piano. Lol
@@clicheguevara5282 music is a big passion 👊
@@mikiethespike Same! I was lucky to grow up in a family of professional musicians. But like you, I’m also OBSESSED with research. I also used to just sit and read the encyclopedia for fun. 😂 I absolutely have to learn new things every day.
authoritarianschoolingcouk
localfuturesorgslashstrangely-like-gulag-schooling-industrial-machine
Thank you for this video. Your timing was incredible - I found this an hour before my appointment to go over my assessment results. I was so scared I would not receive the correct diagnosis for exactly the reasons you articulated. Your video really helped me go into the appointment feeling a little less anxious. When she told me that an autism diagnosis "fits", I was so relieved. I was confident in my self-diagnosis, but it was a relief for that to be validated.
I set up the process for a formal diagnosis of ADHD, and then cancelled for precisely the reason you put forth. My life experience has taught me not to trust the system. And so I’ve been dealing with it on my own (and with community) and doing a much better job of handling it. My primary care guy trusted me and said if you think this is what you are, I’ll give you a prescription. But I didn’t go through the full formal diagnosis thing with a psychiatrist. That was a Bridge too far.
This has to be one of my favorite vids you’ve done. Love the raw emotion, I feel I knew exactly how you felt in that moment, Paul. Thank you 🙏
My first formal autism test was a misdiagnosis. I had a lot of anxiety from my time in the military, so that all caused some confusion. It was a depressing time for me after that, being invalidated and all. I ended up reading more into the DSM-5 and other content regarding autism and autistic traits which only further validated my thoughts on the matter. Eventually, I was able to get another test for autism and was diagnosed. It was made a lot easier after educating myself more on it all. Big relief though.
Thanks Paul. I felt I needed a formal diagnosis to help me address a very painful experience at work. Like you I had read the textbook and couldn't relate to the criteria as they were presented in the text. The person I saw was in no doubt about my autism and her letter helped me a lot. Since then, as I've disclosed to a few people, a good number of them said they weren't at all surprised. I gradually making contact with other autistic people and, for me, it's helped to find other things in common with people, in addition to autism.
I received my formal diagnosis of ASD a few weeks ago and I’ve reached the stage of acceptance. Thank you for your content, it really helped me during the time when I first suspected that I may have Asperger’s up until now where it is no longer is a suspicion. I definitely shared the same worry of my internal struggle not being seen but during my assessment I was surprised at how much I struggled to deal with some of the challenges, especially the one related to storytelling.
This totally resonates with me. I'm diagnosed ADHD combined, and i'm pretty sure i'm on the spectrum. I scored a 40 on the AQ, and i've been intentionally working on my social skills for a large chunk of my life. I'm 40 years old btw. I did my intake appointment for an autism assignment and neurological testing for my ADHD and the lady said she wasn't getting "autism vibes" to my other psychologist. She told me i might not test as autistic because i've worked on my skills so much and it might be my ADHD + my personality that "looks like" autism. 🤷♂️ we're still going to go through the whole process though.
I’m going through the formal diagnosis process now, and this is like hearing what has been going on internally for me for months. The identity crisis has been real, but this video has encouraged me to seek out and participate more in autistic communities. That feeling of being invalidated and not believed is so deeply internalized, but I’m so grateful for channels like yours where I finally feel like someone is putting into words the things I’ve been trying to with other people for so long.
I've got my first appointment with the autism service on Wednesday and I'm terrified that they won't believe me because I've been struggling so much for the past decade and I've finally worked out why. I can definitely relate to people not believing my self diagnosis and how getting a formal one won't change their minds either. They think people can just answer whatever they want to get the diagnosis they're looking for, so they'll just think I'm manipulating the results.
I was diagnosed by a leading specialist in my country after prolonged assessment (2 weeks in clinic because of my excellent masking, followed by 10 weeks specialised psychotherapy setting for ASD). So they could seen symptoms, which nobody had seen in an ambulant setting like overloads, meltdowns, my daily rituals, my irritation if anything changed, my sensory needs, my social behaviour. This helps me twice: 1) with my perfect masking and therefore ideas of imposter syndrome, 2) with anybody (including professionals) who is saying "but you look not autistic" etc.
Nobody can question this diagnosis and this is really great!
You know, I thought to myself, Inknow I am but I’ll watch anyway and this was so great to watch. Thank you. I am currently in the process of trying to get a diagnosis and just had someone basically tell me I should have a true diagnosis before I say I’m autistic which was very frustrating because I know I’m my heart of heart that I am. I want to definitely join the virtual group and world like to find one in NYC
thank you,thank you. This is so comforting to me. I actually did try once to talk to a therapist about this and she was so incredibly rude to me. I relate so much to the aspie people on youtube and the books, I can really just accept this is who I am. It is just who I am.
You express exactly the fears I felt very acutely when I went into the diagnosis process for ADHD a year ago. Your words just reach right into me and it feels hugely validating after the fact. Back then I was afraid of not only the things you describe, but also of being seen as silly for having those fears
I live in America, 42, still not clinically diagnosed. Your videos help me reaffirm myself. Thank you.
Thank you Paul. You are appreciated.
I self-diagnosed on the spectrum when my son was formally diagnosed by his school district. There’s practically 100% overlap between us.
When I expressed interest in formal diagnosis to my psychiatrist, she shot me down inside a minute. “Even if you are autistic, you’ve clearly learned ways to deal with it; you’ve managed to go on to have a productive life”
I cannot express why external validation means so much to me, but 13 years later, I’m finally getting evaluated today. Aaaand I’m scared. A quick internet search brought me here. Your video is helping calm me down.
I have a feeling I’ll be a mess this afternoon no matter what the diagnostician reports.
I'm nervous about being diagnosed as well. I'm glad you were able to find a community you feel connected with. I relate to you as well.
I was formally diagnosed with Level 1 back in July, and even though it did bring some form of validation that my suspicions were correct, I also felt a bit of 'Imposter Syndrome', like I wasn't "Autistic Enough" to qualify or claim it. I also almost wasn't diagnosed initially after my in-person testing, because I only checked one of their criteria boxes - it wasn't until I e-mailed them extra info that I felt either didn't get elaborated on enough, or brought up at all during my screening that they started favoring a diagnosis. I was also tested for and diagnosed with ADHD-Combined, Moderate...so I have that fun as well...lol.
Thank you Paul, for putting yourself out there and sharing, watching videos like yours has been tremendously helpful.
I technically have a diagnosis from my Psychiatrist on the basis of the diagnostic criteria alone, but she did recommend I go and get an evaluation from a professional who does specialize in autism anyway just to be absolutely sure. I’m worried I’ll end up dealing with somebody who has some ridiculous reason why I couldn’t be autistic because of their belief of a particular facet of autism doesn’t quite match up, likely because I’m masking, and I’ll end up having to go get multiple evaluations as a result.
Oh the "aren't we all a little autistic?" reaction! The very first person I tested the waters with on mentioning that I believe I'm autistic went this way. I wish I'd fought back, but it was a work acquaintance and I didn't want to let this become a wedge between us, as I have pretty much distanced myself from most of my coworkers on a social level. Of course, I'm doing the very autistic thing of replaying this in my head ad nauseam, even though it's done and can't be changed now. The journey continues...
Thank you so much Paul. My heart goes out to you for all the times you weren't understood or accepted. It was clear how much that first moment still means to you.
I still want an assessment because I think I am ADHD also and treatment for that could help me with going back to school and a career. But seriously everything you talked about in this video I so relate too. Always felt like an outsider or an "other" or like an alien. And then I found the autistic community and finally felt like there were answers and like I felt my people. I've done a ton of research too, on both autism and ADHD so I'm not going in it completely unaware of what it is and why I would or would not fit. Thank you for this video.
Paul your comments about finding a support group on line helps me see thats what I'm doing each time I click on your videos. It helps me feel understood. I appreciated your perspective about those who will not believe a self diagnosis or a clinical one.
I'm a clinician working for the national health service diagnosing adults with autism. I've felt uneasy for years about 'pathologising difference', quite frankly I dislike sticking labels on people. I avoided seeking a formal diagnosis myself until it felt absolutely necessary. It proved to be the only way to access the support I needed and have workplace adjustments implemented so I didn't have to quit the job. Workplaces have become progressively more challenging for neurodivergent people, hours are longer, breaks shorter, the commute more stressful and we're expected to multitask. Many of our service users have been passed around different mental health services for years before they reach us, and really struggle to cope with mainstream employment or education. I guess I'm saying that yes I agree we SHOULD be able to self identify as autistic and be believed and accepted, and simple accommodations made. If only! ( Your channel is brilliant Paul, I often signpost my service users here, thank you)
This was THE very best video for me to watch.
I am a married 42-year-old mom of 2. I thought one of my children was for years, but 3 days ago I decided that a video I had seen on RUclips, (my mom prompted me to pursue) rang too true and took an assessment online. EVERYTHING MADE SENSE. A lifetime of experiences and internal daily struggles made sense and I wept from the relief of it...I went to bed with the joy of this realization and ALL the connections. The next day and until I watched THIS video I was so weighed down by how this couldn't be and did 5 more assessments that continued to point to how much I had masked and that I was continuing to come out with high scores indicating I was on the spectrum and with more of the Aspie realm. I know-I know I'm still wanting to figure out what term best fits or how it is supposed to be, but that best describes where I am at for now.
This video has now made it finally freeing for me to settle on this, and not feel the need for all the reasons you shared to get a formal diagnosis which wouldn't even be possible for us at this time. THANK YOU. It has made me emotional for the 2nd time since learning about this and my entire life has now come into focus, every single problem that I have not been able to resolve and every single roadblock now has a reason. And because of this video, I can finally settle the war that began not 24 hours after this life-changing revelation, and it was shared in the right way.
I can't thank you enough for this video.
It helped me to accept it. Today I will accept this.
The support group on zoom was key support while I waited for my official diagnosis...for me, I wanted that.
I appreciate your videos SO MUCH! I want to get diagnosed for "hard proof" to present in case I am ever challenged when mentioning this to someone. Funny enough, it's kinda rooted in not being believed as a kid on odd things that I wasn't able to prove. So I've learned to get my facts ready and have all info on hand just in case. Also because of this, sometimes I even doubt myself on things that there's doubt on. I also got emotional when you were talking about how welcoming the community is and discovering odd quirks you just thought were a "me thing" is actually shared by other people after all. It's happened so many times... it's still a little surprising, but not as much as a few years ago.
I guess those doubts are picture book symptomatic for 'cognitive scars' from multiple incidents of gaslighting endured... as far as I'm concerned, I'd assume to be taking 'jerkishly' cynical turns on registering quite a lot of NT | npc | normie 'emotionalist' antics now... [..] but be latter as it may ... and you be happy, and fine at sincerily possible best.
Let's talk about the millions of people that were handed a lazy autism misdiagnosis under the terrible DSM-4 umbrella, subsequently diluting what it is to be autistic in the clinical setting, making it tougher to get effective treatment. Thank God they corrected this with the DSM-5, but the damage was still done.
Right. I still question the diagnosis sometimes for my child, but I think it was correct, but also they ignored symptoms of other diagnosis that affect her much more greatly. The irony being that when we have probed about it; we are almost always told it doesn't matter. That she will get the same treatment for symptoms so adding in ADHD or turrets etc won't change anything. I don't even agree 💯 but it's a common attitude.
So I can see where the value of getting a dx is diminished by "professionals" that don't really have passion for their work and/or are just bad at it. It's not to be mean, but we are all human. People are many times too blindly trusting of individuals due to a degree that has their name on it. I know plenty of people with degrees ranging from AA to MD and PhD that are close friends and family, no offense to them....but the degree *REALLY* doesn't mean anything more than the fact that they put the time in. And even then...there are ways to short cut it.
...or the millions of us who were lazily MIS-diagnosed, drugged, and ended up with severe PTSD because we didn’t know we were autistic until our 30s or 40s.
@@clicheguevara5282
Your profile name.
That's awesome.
😂👌
@@sixthsenseamelia4695 Thanks! I lived in Che’s hometown in Argentina for a while and one day it just clicked. 😂
I see what you did with yours too btw. Lol
Thank you so much for talking about this. I’ve been misdiagnosed SO many times over the years. Nothing ever really explained what was wrong with me except for ASD. I’ve been “informally” diagnosed (basically doctors agree but I haven’t had the formal assessment) and really need to get assessed to get accommodations.
But I just don’t want to spend all this money to be given another misdiagnosis.
This video is such a relief for me to watch. I worked full time in an office for almost two years until I just couldn't keep up with the constant social misunderstandings and issues that I had no understanding of. I lost my job and finally decided to get evaluated for the lifetime of struggles id been having and the clinician had me read from a picture book and play with a toy before deciding I didn't have autism because I didnt "display enough stereotyped behaviors." I was so upset when I read that, because, like he says in the video, I'd felt like I spent my whole life trying desperately to explain how much I struggled only to be dismissed/unheard. I'm certain that if the clinician had experience evaluating adults (especially adult women), the result would be different. It's so hard to spend all that money and go to all that trouble only to feel more misunderstood. I'm so happy that self diagnosis for this is becoming more acceptable, because I really want to find some explanation and some form of community even though my initial go at formal diagnosis didn't go well.
Oh, a video on the reason why I am yet to see a psychiatrist at all, even before discovering ASD and identifying with it. I just knew that I am somehow different enough that not every doctor could understand it.
Also I recently lost a friend group who didn't believe that I might have ADHD and my best friend out of that group said I need to have a paper before talking to him again, so ignorance is real. It was hard to get over such a betrayal, but I'm kinda used to it at this point.
do you want to expose that group on my Autistic Groups Fairness Watch site? Which exists because there is a serious fight between nice and nasty communities, that this video's jaunty confidence does not reflect. What the wrongdoers can do needs logically discrediting in the open
When you said about your experience with a support group, I just remembered the first time I joined AFTI meeting, also made me cry a bit. Even having a formal diagnosis (wasn’t the best experience to go through) I had such a deep impostor syndrome, I was terrified I was not autistic enough and people would notice it and yell at me for making up diagnoses for myself and kick me out. But it immediately felt like home full of people I had a lot in common😊
Thank you beyond words. I’ve suspected since 2008 that I was on the spectrum and been watching a lot of videos the past fortnight. I have found your channel and a woman in Texas channel so incredibly helpful. I was diagnosed with BPD in 2007 and PTSD and 11 months ago it was changed to CPTSD & ADHD. I intrinsically felt something was still missing. Everything you’ve said in all the videos had resonated with me or I have noticed in my brothers.
I genuinely appreciate you being so honest as. Open about your fear of diagnosis or moreover the fear of being misdiagnosed because you’ve gotten so good at adapting and masking I was concerned about the same thing especially as a female who has devoted their life to personal development, healing and psychology and understanding people. I’m feeling very emotional right now but grateful and hopeful, so thank you. I almost never go on FB but have signed up to the support group.
This video is so important to me. My dad is very much against me researching asd or seeking a diagnosis. I have an evaluation next week w a private psychologist. I may need to prepare myself for the possibility that my dad still doesn’t accept it or believe me if I leave with a medical Rx. And now I know I can join zoom meetings! How nice!
On the one hand, you have to process the realization that you are definitely NOT 'normal', and go through that painful life review... and if it was not enough you also have to justify yourself, and convince friends , doctors!
So no I'm not jumping into the diagnostic procedure. Guess I wouldn't stand feeling lost AND invalidated at the same time.
Self diagnosis leaves you in a very vulnerable place - even being a very assertive, solid kind of personalty- and not just anyone can be tolerated around me these days.
And yes, your channels the greatest available help at hand... thank you .
I started crying when you said 'You've found us'. I don't cry much. Thank you.
I was formally diagnosed this year, and it was both stressful and extremely validating. I was so worried that I masked too well, and that yet again I would be told I didn't have the problems I was going through. I matched all of the points of the DSM 5, and was 99% sure I had it, but that 1% caused some rather intense imposter syndrome.
I don't have a problem with someone self diagnosing after doing due diligence with their research. When they do not do that it can become a problem. Diagnosing yourself with something you don't have can be quite problematic, and might make it harder to find out if you do have a problem. So be careful if you are going to go that route.
Dear Paul, thank you very much for these insights. I first went to a clinic for diagnose. They said it was compulsive personality disorder, but I were free to get a second opinion. I emmediatly left my online asd friends group because I thought I had no right to be there any longer.
But I could not find myself in the personality disorder thing. So I was busy searching for a special autism diagnostic center (not an easy task in germany) and had to wait vor 1,5 years for the appointment. Then I was diagnosed with atypical autism. I felt released and things startet to get better. My husband, my collegues and even my family became aware, that my struggle with sensory overload (sounds and smells) were real. And that it was not meant rude, when I got totaly frozen or mad, when plans suddenly changed. And I learned more about my weaknesses. Bevore I thought that I just was not a good person and tried so hard to be like anybody else. No wonder the clinic thought it was compulsive personality disorder.
Now I prepare to meet the monthly asd meeting in my area. I was very nervous about going there. But after watching your video, I am happy to have the chance to meet people of my kind in reallife.
Thank you for this channel ❤ You say everything I need to hear. When I was a kid, all I wanted in life was to find someone who think the same way as I do, someone who understand…
This has really helped it sink in. I've been in denial and very suspicious of myself even while the results keep rolling in and I'm hitting all the criteria, professional opinions, and diagnostic process. I even went to my first meeting, attended live seminars, took classes, listened to so many ppl. It's been a busy year.
But what is said here has really struck me. I've never been believed, why would I believe it now? I got it on a piece of paper and after an hour I was still going really?! Is the search really over? It's been 30 years...
Thx for this. Looks like 30 years is right on time for me. And for anyone else in the same place as me and having trouble your time might be now too. Crazy right?!
The first of your videos that I watched was a revelation to me. Especially reading the comments. I felt a real connection with people who understood things I did that others usually laugh at. Thank you for creating the videos and encouraging respectful, supportive comments. It has made a real difference to many people already 🙂
Thank you so much for this video... It really surports me as this is exactly where I am standing now. I've had a burn-out in 2017, and most of the therapeutical origin was set on my being born and growing up in war times, so I have been clearing traumatic traces. Now, that I get back on my feet and in the proess of launching my own business, I get black-out sleeps and exhaustion from interracting... which of course reminded me of 2017, but it is pretty clear to me that I don't have depressive symptoms. I am discovering now many autistic signs I can recognize in my personality, and past memories that date back to my very childhood fall under a totally new - and far more consistent - perspective. I am so grateful you and other heart-centered people in the spectrum are allowing me and others to understand ourselves better. I have decided to go through the diagnosis process.
When I started my journey to get more clear about myself there were a lot of signs (and test results), that I could be autistic. I wanted to get an official diagnosis to be sure about it, but of course, it took some time. In the meantime I found very good and helpfull information and support in the autistic community online.
But then my diagnosis was ADHD, influenced by giftedness (this made it look more like autism). I was told that there is much common ground in the different neurodiverse expressions, that’s why I found myself in autism as well as I do now in ADHD. Some difficulties I have are much better now under medical treatment (esp. the overstimulation and emotional instability) and therefore I‘m glad that I seeked for validation. And a lot of the challenges I have to deal with are easier with the knowledge that was provided to me in the autistic community (e.g. here) and I‘m very thankful for that. And besides a lot of neurodivergent people have both characteristics anyway 😄
So to me there is a good reason for getting diagnosed - it could be something else (too) with different therapeutical consequences. It‘s not about needing validation from the outside, that you have a right to be you.
This video has literally changed my life and I only watched it 5 minutes ago.
Thank you for sharing your story. I also did an online evaluation, scoring very high for Autism. I will check out the online support group.
my evaluation starts next week and I'm honestly so scared of it that they would not take me seriously...and that I would be left alone again to deal and "cope" with it myself if this goes wrong. Especially after all the work I put into considering other options aswell just to make sure that there isn't something else that might fit my struggles (but also talents) better. I just want to be taken seriously and get the help I need, I want to be able to not be exhausted and tired every day and to be able to do the things I love.
Thank you for making these videos. Thank you for making this specific one.
1 year later: evaluation did in fact not start the week after (some misscommunication) am still waiting for it :/. had somehow forgotten about this video and rediscovered it right after I recently made the choice/my conclusion that I am, in fact autistic, but that I'm making a difference between feeling, seeing, perceiving myself and my past as autistic AND the "clinical" version of autism, which an official diagnosis would be. It actually helped me be less afraid about whatever judgement they are going to make and feel less helpless.
Afterall I DO know myself best and I do think there is a very good chance that they won't be able to see it because of alot of factors that make my situation complicated and we haven't exactly found a way yet to look into someones brain (not meaning physically)
Oh how I appreciate what you are doing! You really are spot on about worrying that people may dismiss the idea totally. I am advocating for my 8yo. He scored very high on the probability screening. He won't meet with the doctor until April & I feel so helpless in the meantime. I told his teacher & another member of faculty & they waved off the notion. They said, "Then he's probably a genius." I appreciated the sentiment but I needed more empathy. Five months is so far away. Idk if I should even tell him or what? When he was 6, he told me matter of factly, "My brain is Medium." I may just run with his theory for a few more months❣🏃🏾♀️🤫
Exactly my experience! I felt instant identification with the autists and their stories and symptoms in the RUclips, but when I read a textbook (I think it was the same as yours) and became dubious and alienated. The boon was so full of disability and restriction and deficiency and obsession and all this pathological language, not like I felt - even though I had been depressed and anxious and suffering from all kinds of things. Also I felt somehow fake, not having been diagnosed as a child - even though nobody was diagnosed with high masking autism when I was a child in the 197Os.
Awww Paul, I teared up at the same time as you! I’m still waiting on an assessment/diagnosis and I am finding life incredibly hard at the moment. But your video has really helped me to look for a support group that welcomes people like me in limbo in. Thank you for this video, it really cheered me up and helped me ❤
this really helped. i recently went to a neurologist to receive a diagnosis but he said i was too bright, smart, and KIND to be autistic. he got angry when i mentioned that research about autism in women is limited and made me feel guilty. i apologised for invalidating his degree and he said “oh that’s so kind that you considered my feelings” which only made me cry more and say “i can’t tell if you’re being sarcastic or not” which he used as evidence that i have apraxia. i don’t understand that. i felt as though nothing i was trying to say was being heard. he acted as though he knows me more than i know myself.
I put off a formal diagnosis for years because, until a relatively recent change in certain rules and regulations regarding getting a pilot's licence, it would have been and end to the only bit of hope I feel I have in my life and my existence would seem pointless with nothing to aim for. Since the change to these rules and regulations that allowed people with an Asperger Syndrome diagnosis to qualify happened I decided I would take the chance with a formal diagnosis. I was recently formally diagnosed with 'Autism I (Asperger Profile)', which I take to mean an AS diagnosis and therefore my hopes and dreams are still valid.
I have told a few people and I don't mind mentioning it when applying for jobs. To my mind it's a case of 'never be afraid of the truth' and 'truth will set you free'. In a way, I am set free by the diagnosis. Apart from a job rejection, people have generally been positive towards me like they never have before. In some ways, I wish I'd been diagnosed years earlier as I think greater understanding for both myself and others may well have saved me from the absolute hell I've had to live through which resulted in nervous breakdown and suicide attempts. In a way, I'd reached the end of the road of life without a formal diagnosis. I think the diagnosis has given me a new lease of life I have yet to discover the fruits of. Maybe, one day, I'll get that pilot's licence.
I was fortunate to be able to be assessed during a 3 month residential dual diagnosis program. I'm not sure if a "formal" assessment process would've produced a dx. Definitely wasn't willing to spend the $1700 aud to risk not being diagnosed. With the residential stay, not only were the psychologist and psychiatrist able to see me in day to day life over three months, but they also saw me at my "worst" (e.g meltdowns, sensory overload) these combined with three months of weekly one on one sessions with the psychologist and two groups per day, it allowed them to see my "autistic self".
It was quite the bonus of the program, had no idea they could do it, my psychologist brought it up (she was super accepting of a self dx, just brought it up as it could help with accessing support) There definitely are a lot of shortcomings with a diagnostic criteria that is based on deficiencies more so than traits, then you throw in years of subconscious masking as an adult and those of us who were "lower support needs" and "higher intellectual capacity" (the ones who flew under the radar as children as nerdy or just quirky), we still have a ways to go with adult dx (and asd dx in general)
This is why within the community self dx is perfectly valid!
Never had worry about this. I was dragged before all kind of doctors in Grade 3 and labeled ASD and told there was something wrong me from that day forward in school till I switch schools for high school. I lied to myself though, that told myself that I was normal and didn't have ASD. Masked to make it so but I'm not good at that my true self always showed. Thank you for this youtube channel. My early ASD diagnosis has been a point of shame for me, I've felt alone with if all my life. They sure treat this ASD differently today than they did in 70s.
This is the second time I’ve watched this video, the first time was about 3 months ago. Both times I have had to stop at the point at which you said in the group they just said “welcome home. We’re glad you found us.“ I’ve had to stop the video because of my overwhelming need to cry. I would love to find a group like that. Even just one or two people. I’ve always felt I am the odd one out.
Thank you for making this video- watching this has been validating.
I teared up, too, when you said “welcome! You’re home now!”
Self-diagnosing and finding the autistic community has been a godsend.
I know this is months later, but thank you so much for videos like this. I’m in
my early 60s and see no point in diagnosis. I have coping strategies I use, and friends and family believe and accept me. Videos like yours are so helpful: they have really helped me.
Thanks so much for the VERY valuable work you're doing! External validation has ALWAYS been a problem for me....and darn it, it's time to STOP and just TRUST myself!
I've been absorbing so much content about autism in general and specifically adult undiagnosed high-masking people and despite really resonating with a lot of it I was still feeling exactly how you described yourself at 12:03 For example, when I saw it the other day I was almost nervous to click on your "Isn't Everyone A Little Bit Autistic" video because I inherently knew that the answer was no and I was scared that I'd consider myself to be one of the people that you were diplomatically putting in their place for invalidating the autistic experience. But just a few minutes into that video I found myself subconsciously identifying with your side of the issue rather than feeling like I was the one being 'lectured'. Still I had/have very serious doubts and have been struggling with whether to try and pursue a formal diagnosis, so I was very excited when I found this video hoping that, like so many of your other videos have, maybe this one would contain something that I'd find helpful. This video has literally changed my life, I started crying at the same time you were getting emotional near the end and I'm still crying as I write this. I resonate so strongly with everything you said, and this is the first moment I've felt empowered to be able to say that accepting my self diagnosis is going to be helpful for me, and maybe a formal diagnosis wouldn't be and that's fine so I don't necessarily need to go through with it if I'm scared they would misunderstand me, and that even if they didn't a formal diagnosis probably wouldn't change much anyway. Thank you
When I watch your videos, I am fascinated by the way you break it down for us all. My daughter and son are both diagnosed with ADHD and the psychologist believes there is something else to discover for my daughter. Autism is the next possibility. So like you, I dove in to understand more and learn and got deep. Came out with the online AQ assessment and did it myself, with a high score. I asked my wife to do it as if me, the score got higher. I think I’ll check out your group. Ps. I emote easily and also got emotional 🥹 keep on keeping on! 😊
I'm going for my ASD evaluation in 3 days and I'm extremely stressed out about it. All the worries that you mentioned in this video I've been having. The biggest of all is what if they try to tell me I'm not autistic when I know 100% that I am. It's so important for me to get this diagnosis bc I need begin receiving treatment so that I can finally start living a healthier life. I'm 39 years old and not understanding that I was autistic brought me to my knees of addiction. I'm now in recovery thank God, but I NEVER want to feel like I want to use again so that I can self-medicate from who I truly am. I'm a mother and a wife and I deserve to truly be who I am without having to feel bad about it! I lived majority of my life feeling lost, confused and scared. Finding out about my autism has been a blessing and I don't want anyone taking that away from me! My husband totally agrees with and supports my autism. Which I'm most greatful for so he will be joining me at my appointment. Do you have any extra advice that I can take with me? Thank you for all your videos, they are super helpful!
I've known for about 3 years that I have Asperger's. Before that I just thought I was weird!
Since then I've been going through the process of trying to seek formal diagnosis, and I've looked at lots of videos and other information.
BUT this is the best thing I've seen so far, and after watching this video I'm now re- thinking whether I'll even bother to seek formal diagnosis anymore.
Probably not!
Hello. I just want to say that this video has changed my life significantly. I had always felt a connection to other autistic people but I also thought the same things you did e.g. no one has ever diagnosed me, I'm taking away from people who actually have autism, I'm "normal enough", I'm not "autistic enough". Being able to hear and relate to your experience has validated my existence in a way nothing else has. I felt so many "me too" moments during this video, in the comments, and in your other videos. I feel like I finally have an "answer" and a way forward. I feel like I'm finally "home" too. Thank you for sharing and for all the help you provide in your videos.
Every time I watch your videos I start crying because I always feel so understood ❤
What a timely video! I just finished my assessment and I’m now eagerly waiting for the next appointment when we’ll discuss the results. Thank you for the nice insights!
I was first diagnosed with autism a few years ago, and then they had a new assesment with me and determined I was not autistic... :(
I really relate to the feeling of not being believed. I was also diagnosed BPD around the same time i was diagnosed autistic first, but now this assessment person things its just bpd ( and ocd was already given to me years ago).
I feel really alone in this story of being diagnosed first and then they reassess it and undiagnose you. Its very devastating
My experience with being diagnosed vs. being undiagnosed is that we should be open for each other regardless of a diagnosis. If someone is guessing that it could be autism, this person should not be excluded, but welcomed. So that we all can learn from our different experiences and help each other.
Also I agree that people who would not believe you for being autistic would also in most cases not believe you, if you had a diagnosis. Because they don't want to believe or don't understand the concept and are unwilling to open up to this new thing and learn more about it.
However I think that calling yourself autistic while undiagnosed can involve a certain risk that should not be underestimated. That is that there are many people out there that claim to be autistic and make a big fuss about it, but they actually have some other diagnosis that is similar to autism in parts. That creates or maintains some misconseptions and prejudices about people who are really on the spectrum.
Also it can be dangerous for the person that thinks to be autistic but isn't and just keeps telling himself that this is the only possibility, while there are a lot of differential diagnosis with overlaping symptomps to autism. Maybe the person could get good, appropriate help but denies any other diagnosis than autism and therefore suffers unnecessarily.
I agree, even if you have a diagnosis you need to be careful about attributing every issue or problem to autism. Because it may be you need help with something else, and you’ll miss out on those opportunities.
Differential diagnoses is a dangerous idea, because historically one of the things autistics' have got diagnosed with is schizophrenia. That is the top reason why there is a safety need to establish that you are seen as mentally healthy before you go ahead, and a safety gain in already being connected to an autistic group before you seek diagnosis. To prevent an older-attitudes doctor getting away with saying it's schizophrenia.
The "suffering unnecessarily and not getting appropriate help" is certainly true.
It's also true for all kinds of other conditions and even more so I think.
From what I've educated myself over the last few months it's much more common for autistic people (especially women) to be misdiagnosed (either self or professional) with other conditions (BPD, bipolar etc.) than the other way round.
Or people get a correct diagnosis but a comorbid autism gets overlooked or its symptoms dismissed. I got (correctly) diagnosed with depression and anxiety years ago, but all the other problems I voiced during therapy that could be better explained by autism (instead of accumulating additional diagnoses) were just explained away by "yeah yeah, depression can make you feel that way/have those symptoms". I never got better over the course of a decade until I discovered autism exists in women and suddenly everything fell into place.
So everything you say is true but it's even more relevant the other way round.
Thank you so much for the Live event! It was my first time and I didn´t manage to write during the livechat, no multitasking for me XD, but I enjoyed it! Currently I learn so much from all of your videos. I´ll register for the diagnosis process soon (got my ADHD diagnosis 1 year ago, but always thought here is more) and try to keep in touch one way or another. Maybe I´ll join the FB group if I can find the energy. 💖
Thank you for being vunerable and sharing your thoughts as always Paul. I first starting questioning whether or not I was autistic this time last year. Last week I got an official diagnosis, and that helps. However, watching your youtube channel and feeling understand here and with my autistic friends has done more for my soul than a diagnosis ever could. It certainly was the cherry on top though.
Am I afraid of being diagnosed as normal? I would answer that question differently. At six months past my self-diagnosis at 73, and after meeting some members of my tribe, I feel lucky to finally be living a straightforward, confident life, no longer targeted for regular social correction by the people I allow close. I know who I am so I can stand up for me. Thanks for all you do, Paul.
Thank you for this video and your great work! It's very supportive either whether I have Asperger or not. I am an empath and cried when you did at the end. Never belonged anywhere. I had lots of experiences being scapegoated. Like so many pure and empathic people. We all had at some point in our lives the narcissistic brainwashing attempts ( most likely it started in childhood) that we are impostors and don't belong etc. People on the autism spectrum are even more sensitive to emotional abuse and the modelling done by " neurotypicals" with unhealthy projection defenses - who were also traumatised being a child but are in complete denial about it. Will join your facebook group!
The image of Paul looking at the criteria and going “well, sort of? Maybe if I squint?” was both a genuine surprise to me and also reassuring. I certainly do that, but it feels to me like in my case it’s because important parts clearly don’t fit, whereas for other people they probably clearly do but they just feel understandably insecure. The other problem is that I feel very at home with various online communities, but then feel like I must be overstating my commonalities to fit in. I suppose I would be vulnerable to that feeling if I’ve spent my life masking to fit in...ah, but have I, or am I making that up too? The mind boggles. I’m still trying to find my way through all that.
I knew I was autistic after I watched love on the spectrum. and then watching channels on RUclips. so I went and got a formal diagnosis and knew what the outcome would be. and it was true. I am so glad I did it