Navigating Late Diagnosis for Autistic Adults
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- čas přidán 16. 08. 2024
- Hi! I'm Orion Kelly and I'm Autistic. On this video I explore the topic of navigating a late autism diagnosis. Plus, I share my personal lived experiences as an #actuallyautistic person. #orionkelly #autism #asd #autismsigns #whatautismfeelslike
⏱ Index:
00:00 - Welcome
00:57 - Late DX
03:21 - Impact of DX
15:35 - Key strategies
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ABOUT ORION:
Orion Kelly is an #ActuallyAutistic vlogger (CZcamsr), podcaster, radio host, actor, keynote speaker and Autistic advocate based in Australia. Orion is all about helping you increase your understanding, acceptance and appreciation of Autistic people.
#AutisticVoices #ActuallyAutistic #Autistic #Autism #OrionKelly #ThatAutisticGuy #ASD
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I've not had a formal diagnosis, at my age it's hardly worth the bother, but I discovered it from doing online tests after younger family members were diagnosed. I was 78 so you can imagine. Or maybe you can't. I'd previously been told I had a personality disorder. That had been a revelation. This has been a further revelation. Life has been very hard, and now my best- and only close, friend has reacted with disbelief. As you say, he thinks I'm being a hypochondriac, or it's just an excuse for certain behaviour. But I'm just getting on with it. He's not the sharpest knife in the drawer anyway. I 've already have had to deal with the lack of support and disbelief of nearly 40 years of M.E. so coping with this as well is just one more thing to cope with.. It's a good job I'm a tough old bird. :) And I'm finally learning to love myself. But yes, I am exhausted, both physically and emotionally. But facebook has some good support groups which I joined and I've watched many many videos from people like yourself, especially females. I don't believe I've seen one from anyone in my age bracket however. and it's a whole other thing, believe me.
Christine I'm now 77, not formally diagnosed until 72
I had suspected it but had been told all my life i was wierd, actually had my boy cousins tie me to a post outside outside our Grandmithers house, i was not immolated simply because my aunts would not allow Those imps of Satan matches. But they told me to walk out into a street and throw myself in front of a car because I was useless and did not deserve to live.
Support network, ha ha! My parents, neurotypical both were told in 1953 I did not exist- there could be No Female Autistics- but yet there I was. Looking back , I had to be stronger than expected, but I did make it through to adulthood and beyond. When I did finally get my professional validation, I found it freeing.
My summation of Autie- hood & I am at the High end- formerly called Aspergers- now they state" On The Spectrum"
We are just wired differently, in modern terms We have a slightly different motherboard- equally valid, equally worthy to inhabit this Earth.
I think we are Cool people, add spice to life once you take the time to know us! April is our official Autism Month, but I also celebrate another special day. 18th June is Neurodiversity Day, a day to celebrate yourself!
And my ( semi- ironic) attempt at witticism
You pity Me because I'm different? I pity the Neurotypicals, they are all same!
Blessings to all and
ROCK YOU!
SELF- KNOWLEDGE = SELF- VALIDATION
Lost all my friends in the course of 30 years, have none left. Got diagnosed two years ago, now 52.
@@peachmelba9333 Well my birthday is in April too so it's my month x2. :) I've been "weird" or "stupid" all my life, though I did manage to get a University place after my divorce ages almost 50 and got myself a 2:1 Honours Degree. So, not so stupid after all! I am now 79 and learning new things about myself all the time and understanding how my life got so tricky. I am content with myself now. Finally. :)
@@christinestromberg4057 I'm a Mensa myself we are far from stupid, as Yogi the cartoon Bear once said We tend to be "smarter than the Average Bear" But then to get along in This World we didn't create, we have to be. We cope, sometimes we "fly under the radar" so no one suspects.But you, like ME have probably survived a lot of things by now. Stay Strong, and most of all, Believe in YOU, just be the best Christine possible and you'll be fine.!
@@peachmelba9333 I'm getting there. It's only been a few months but a very interesting few months. :)
For me, especially employment has been the most difficult thing in life. For years, people have told me 'it is difficult for everyone' so I assumed I must be weak, lazy, highly sensitive, lazy, weird, lazy, awkward, LAZY. It got so bad that I self injured for many years, hating myself for being lazy, hating myself for not being able to be like everyone. It wasn't until in my last job when my boss said 'work? It's just work, everyone does it' in the very matter-of-fact manner that it hit me. For me NOTHING in life is 'JUST' - never just work, never just wake up, never just make friends or just meet someone, just go to school, just travel, just have hobbies. Nothing is simple in my life. Accepting that for what it is instead of blaming myself was a huge relief.
Yes - a daily thought throughout my adult life - why can't I just be like everyone else and just get on with things. How can others just get on with things such as long hours at work for days on end, masses of overtime and still have the energy to socialise afterwards? I believed that I was weak and lazy too.
I'm 34 and I received my diagnosis this week. My biggest struggle right now is figuring out who am I. I've had several identity crisis in my teenage years and I could never imagine that they were due to masking, I didn't even know what autism was back then. I'm feeling quite lost..
Half a year later I am still trying to figure it out 🙌🏻
For what it is worth my advice is to consider what your values are. Learn, if not already developed, to guard your boundaries and stand up for your values (not force them on people). Imagine everyone has their skills/abilities on a radar chart, you will have weaker areas that most are average or great at but there is strength in accepting your weaker areas, especially when you understand that you have strong areas that other's are usually much weaker at. If you can be confident about your weaknesses because you also know you have your strength, your evolutionary purpose. One thing many people struggle with is knowing their purpose. It can be daunting to figure out but it shouldn't be. You only need to have a very rough idea that can slowly guide you in the right direction. Part of me has always wanted to do good good for people. My purpose is to help reduce suffering in the world even if it is a small part I play. Right now, I only have a blurry background on my canvas and a few in-focus details that have emerged since. Learning about charisma, body language and social hierarchies also helped me. Sleeping pattern, exercise and good nutrition are also important.
Anyway, these helped me find who I am.
If you like an idea, draw a symbol that represents it that will be a daily reminder to develop that new habit.
Good luck!
You are the same guy, think that often people are misdiagnosed, so label don't mean jack sht
Same boat here. I don't have the diagnosis yet though. Having discovered I'm autistic a few weeks ago by watching Orions video. For the first time in my life I heard someone describing how I felt my whole life in detail. I started sobbing like a little child and I immediately knew - "this is who I am".
Now it still feels like I don't know who have I been my entire life and who really am I in the present, but at least I know the nagging thought of "it's not me, I'm not myself" haunting me for decades was there for a good reason.
Since this discovery I cry a little everyday - it brings relief and just comes naturally.
Give yourself time and try and be very attentive to what your feelings and your body are trying to tell you. Notice what brings you real joy and what gives you anxiety.
In the end I guess defining yourself a new will be a long process and I'm not sure whether I'm ever gonna feel like I have the final answer to the question of "who am I". But at least I know who am not. That's a good start.
Good luck to you on your journey. Take good care of yourself 🤗
I'm 26 years old I had been unemployed from 3 years since I graduated from college, I really struggle with communication with people and maintaining eye contact, social situations make me anxious, usually stuttering and speak in unfamiliar language when I talk, I don't know how to be independent such as get a job or something I live with my parents and sisters in a big house
Most of us who are older and recently diagnosed suddenly realise that we were subconsciously masking and scripting for decades, actors in someone else's play. That in itself is a shocking revelation.
This is what led me to my search for answers, ultimately leading to an autism diagnosis.
Yes💔
I was diagnosed at 55 years old. I find the 'burnout' issue you described especially relevant.
nearly 52 here, diagnosed at 50. Level 1 autism, plus ADHD inattentive type. Having terrible trouble with depressive feelings and sometimes downright depressed. And a psychologist can't really do anything because my problems with the world can only be solved by the world changing. Everyone wanting power and money is the biggest issue and is the root cause for all the suffering.The biggest uncertainty in life is never knowing how people will react. And sometimes one can encounter another autistic person - that can result in war or love - also unpredictable.
It’s hard to take the comments of somebody called spank mcnasty too seriously, but I get what you’re saying. I was diagnosed at the age of 57
@@paulrudd1063 With ya man, but should I take someone called Paul Rudd seriously though? :P
Im 55 and can’t find a practice willing to access me. Im in Nevada USA
@@paulmichaelfreedman8334 I'm 40 with the same pairing. I find that gives me unique insights, ideas and solutions.
My experience is that it is a blessing and a curse.
I'm with you on the depression. I'm permanently on Citalopram and Xenidate, both help a lot. I feel like the depression is due to having bad circumstances and never get out of it. I wish that I had sufficient money and I'd love to be a high earner so that I can give to charity (Charity:Water is a great one and is transparent and efficient with funds public funds).
In your experience, do you feel like your ADHD IT makes your autism less visible to others? Which was diagnosed 1st?
Cheers
You are actually saving my life at this moment.
My fiancee ended our relationship of nearly 8 years. We had a daughter of 7 months (at the time) and because of my autism (high functioning, late diagnosed in 2013 without professional help) I only see her for a couple of hours per week.
It's now been over 6 months after the break up and I have learned so much through my own research about autism and about life, but am still completely devastated and broken.
The insights are all that you describe in this video and I no longer know who I am or what I'm doing here. Don't know where to go or what to do.
Completely anxious about life and everything in and around it.
But the biggest thing, my greatest fear that keeps growing is not being able to take care of my daughter and my old girlfriend, as a result, keeping her away from me.
The struggles are unbelievably hard on me and the people around me help with the basic neurotypical responses, but not with my autism. It's completely outside their knowledge and comfortzone.
It's the millions of questions that I can't get answers for because it's not neurotypical to ask such questions. They don't exist in their world.
You break up, grief, grow, have a setback, grow and move on.
Not at all how I'm experiencing this.
I'm taking steps and finally took the first real step towards professional help within a month or 2.
From the bottom of my heart and soul:
Thank you!❤
Just to let you know that I'm thinking of you, and sending you and your little one one love and support. Oh and a piece of advice, if I may? Never underestimate how much a child will value the fact that you/one continues to try: try and connect, try and love, trying and care, however you can. I'm yet to see a situation where that has been authentic, and it hasn't mattered far, far more to the child than how objectively successful those attempts could be said to be. You love her, and you want to be the best parent you can for her: that's an exceptionally great place to start from. And even if you feel right now that you will never get any further than that, a lot of people don't ever get *that* far. You daughter is a lucky child to be loved like that xx
Before me and my brother figured out we were autistic. We had made a saying. "Fake it till you make it."
I’ve been misdiagnosed for 41 years. It’s a relief now to have a diagnosis that actually fits even if it is a self diagnosis.
Recent adult diagnosis. So burnt out that Im unable to even string a cohesive sentence of my thoughts together. I can say - thank you so so much from the bottom of my heart for making this video.
And thanks for sharing too, there are a lot more Female Auties and Aspies than they thought, sometimes we can " slide under the radar " 😉 than our male counterparts. What they also didn't realize is someday we may be Mothers as well. I had 3 children, 1st ( girl) believe essentially Neurotypical as is the 3rd ( boy) but the middle child, my older son, diverse like ME, his favorite Muppet character was Gonzo, adrift in this world and the only one of his kind.
He died at 31, of an undiagnosed cardiac condition his doctors never caught, oh I miss Him still, he was the " son of my spirit".15 years have passed!
Incidently I married a man that was O.C.D, didn't realize it when we married. I spent 44 years with that Man, 44 years of him tapping our doorframe when entering and leaving.
I once snapped a little. We were expected at a family function and there he was tapping away.
My Response " if you're through blessing the doorframe, We have somewhere we are expected to be in a short while "
I am currently in the process of trying to get tested for Autism, but whether or not i truly am autistic this video spoke to me deeply. Thank you for you wisdom and encouragement
Going through testing now, I'll be 48 in August. Hope you find a Dr. soon! Had to move back in with my parents and can no longer work. Honestly scared of the future but taking it a day at a time.
I think I’m going to go and see if I have it. I have very low social skills but I’m not sure if it’s because I have major depression or autism. I feel like an alien. I’ve always felt different
I asked my doctor to get a test done for myself but here in Sydney it's very costly, $15,000 for a test. Why is it so dear.
@@brettburnside1457 sadly society let you down. I hope videos help.
My experience getting diagnosed is that PhD Neuropsychologist who specialize in Autism and ADHD are much more helpful than psychologists. My experience is most not all, but most psychiatrists have no training in Autism and only some in ADHD enough to be able to prescribe medications. Unfortunately, these unqualified MDs will gaslight autistics rather than admit that they are unqualified to assess or treat autism. Make sure to ask lots of questions. Ask them how much formal education in autism. Then how much experience and how many patients with autism have they assessed and treated? Then what papers have they written on autism? Why do we hire doctors without interviewing them? We do not hire landscapers without interviewing them and finding as much information about them as we can, so why do we hire doctors blindly? I think as patients we should be asking doctors for the CS/resume. One thing you can do to increase getting a Dr either PhD preferably or an MD to listen to you is to do some of the online assessments which are not diagnosis, but you can print those out and take them in to show your doctor. If you have several of those in hand a doctor is more likely to listen to you. If one doctor still does not listen to you, then get another opinion. Also, be very alert to gaslighting. One psychiatrist told me that if I was autistic that I would have found out when I was in elementary school. I looked him in the eye and said, "I was born in 1964 are you telling me that you believe that children growing up in the 60s and 70s were diagnosed as autistic when doctors did not even know what autism was? Then the A-hole, told me that I was just old and senile, and I did not know what I was talking about. There was no way I was either autistic or ADHD. I then looked at him and told him that I had been diagnosed in 1994 with ADHD, and my neuropsychologist who is a PHD and had authored full dissertation and is deeply knowledgeable diagnosed me as autistic. This is why I do not recommend psychiatrists for anything other than ADHD medication. My current psychiatrist is fantastic, but I made sure she had my diagnosis before I even showed up. I also see her for ADHD medication! So just because an idiot doctor who has never been trained properly says you are NOT autistic does not mean that you definitely are not. It may mean they are unqualified to be saying that. I have had other MDs tell me within 30 seconds of a conversation that I was not autistic and that I just had social anxiety. An assessment is long and an entire process.
This spoke to me so much. Diagnosed at 48. I’m 51 now and I’m still processing a lot of anger and feelings of loss with my past and how I was treated by adults as a child. I also was told I was bad and broken and lazy and deserved to struggle. I am on the upslope to remaining positive. I truly am happier than I’ve ever been and things finally make sense. Here’s to moving forward ❤
I recently received my diagnosis, at 38, and the hardest thing to deal with is the feeling that it's already too late..
I was diagnosed at 68yrs although I had suspected for some years before. The most positive thing about the experience of being diagnosed has been having so many of my traits, incidents and experiences explained.
I've just had my GP refer me for a diagnosis, so I'm just starting down this path at 63. Those reasons that you give are my main motivation for seeking a diagnosis. It's good to know that you found it positive.
Hi Doug, I'm 62, and have just been referred by my GP for ADHD assessment, he's also of the opinion that I have an ASD influence in there too, I guess I'll find that out at assessment. Roughly how long does it take between GP referral and assessment?
@@Grim1of2 My diagnosis took 2yrs but that was partly because the UK has a long waiting list and also due to the start of Covid.
@@Grim1of2 It took less than a week for me to get a letter in the post rejecting me for a diagnosis. In fact the whole thing happened so fast that I doubt they even viewed any of my notes before sending a rejection letter which had the appearance of a standard template letter. Interestingly nobody signed it or put their name to it and they didn't say that I wasn't likely to have Autism, just that they didn't consider my case worth diagnosing. This seems to be how North Ayrshire NHS operates and I'll be following up on it.
I’m 63 and just now finding out I’m on the spectrum.
One that’s been a big barrier for me has been well meaning gaslighting. I’ve told family members that I’m autistic, and their immediate response is “no you’re not!” And the underlying message that they’re trying to send is “but there’s nothing wrong with you,” because they’ve internalized that autistic people are inherently flawed or damaged.
Oh gosh. I understand this. I hope things have been better for you this summer.
It’s a roller coaster being late diagnosed , I was diagnosed last December aged 51. First I was relieved because I had an answer to why I struggled to do life like everyone else, then I felt really sad because all my life my own mother had told me I was bad and evil and not right in the head , and then angry as the people I was brave enough to share my diagnosis with were either really dismissive telling me that the experts had to be wrong or insisted I must only be very slightly autistic because I have a job and they have never seen me rocking in a corner like that 7 year old kid they know ..and now 6 months on I’m a muddle of all three. The anxiety is massive , I have to medicate it or I can’t function at all ….late diagnosis is not for wimps !
Forget the diagnosis :)
...and find your true self !
"all my life my own mother had told me I was bad and evil and not right in the head"
- this is the root: wrong beliefs or introjects.
To me it would be like " Oh ! That's Why ! " No Kidding ? " 😜
@@davidcohen26 I agree
I am 51. I just got my appointment to speak about ASD diagnosis. I am scared to venture in this direction but I will because I want to shatter the glass ceiling that is over my head. I want to live a more empowered life I'm just afraid this will result in the opposite.
@@sharonagoren6751 the diagnosis path can be daunting , I found it pretty scaring and very draining but I’m still glad I did it because it has helped me understand I’m not wrong or crazy just different. What happens afterwards is very much down to what you want to happen, who you choose to tell and in terms of support where you live. In the UK there is pretty much zero support post diagnosis for adults unless you have severe co occurring conditions which is probably fairly rare if you have made it to 50 undiagnosed. 6 months on I’m still trying to work out what it is I need to live a better life and how I can get that. It has impacted my relationships with the people who I have chosen to tell some positively others have just completely excluded me ..that said I would do it again but I now recognise it’s the start of a journey rather than an end point
My eldest child got me to do a test online. I discovered that i am Autistic aged 44. Now i know why i cant make or keep friends.
I m 46 and I was Diagnosed in February this year.
It's been a very good having an explanation to all the difficulties I have had during my life. I have anxiety and have always suffered with poor mental health, I'm struggling with imposter syndrome and wondering how different my life could have been.
Your video really resonates with me at this time. I'm really pleased that I can now try to look forward and learn to be more me. Thanks Orion for all your videos the are very helpful.
Yes ,I am glad I stumbled apon him too ,
Hi, Orion. I'm in my mid 60s and received my double diagnosis of ADHD & AS 2 months ago. The relief of finally knowing what's going on with my brain and in my life is HUGE! and I'm grateful for channels like yours that are helping me to figure out, "Well, where do I go from here?" Thank you!
I am 66 years old in 5 days. I think I am on the spectrum. I taught school for 24 years and was that my wake up call as I saw myself in so many that were on the spectrum. With or without a diagnosis,I already feel out of place and have this isolation of not fitting in. Even with Orion making excellent points, I still would like to have this validation in the form of a diagnosis. What is the first step in getting that? Do I start with my primary care physician? Thanks for your input.
@@timothymoore3218 I am 64 and trying to navigate that process myself . Who knows with this med. So called system 🤨 some say primary doctor , but to me that seems a waist to pay for visit to someone who probably is not qualified to make that diagnosis . I think go straight to a mental health professional who specializes in this area would be best . Good luck to you 👍
@@timothymoore3218 I'm in the US, and there's nowhere to go that's dealing with over 21. I have no idea how to proceed and failure seems assured. A diagnosis might help seek disability, as I have already become far removed from contemplating employment. I'm 62 this year.
@@timothymoore3218
Timothy, if you live in the uk, make an appointment to see your GP and ask for a referral for assessment
Good luck!
I'm kind of happy that I was diagnosed later in life. I always assumed that I was smarter or at least less shallow than the people around me and used that as a way to explain my awkwardness and failure to establish friendships. If I would have known as a kid I would probably have been less confident about myself. On the other hand, a lot of shitty things happened that could have been prevented had I known that I was autistic. At least I can explain them in hindsight now.
I 100% agree with this for myself!
Would you talk about suicide in the autism community? As a late diagnosed (07/2022) female (mid 40’s), I’ve recently learned about the high rates of suicide among my demographic. Thank you for your videos.
I'm in the same boat (f, 46, 3/22). I'm not sure how to put this, I'm not meaning to scare anybody, but my experience was that I felt very suicidal at times since my diagnosis.
Partly due to the disappointement that I couldn't improve my life and that of the people around me instantly. (I know my behaviour towards loved ones is very challenging sometimes and I really don't want to be like that.)
I thought now that "I know everything" I should be able to make adjustements in the light of my autistic needs and in the end everybody would be happy - me included.
But I underestimated how much time it takes to get to know myself, my needs and even where I struggle most - decades of masking led to losing myself more or less completely.
So, Orion's video is spot on about all the impacts of a later in life diagnosis. And also about the strategies.
I'm better now than I was a few months ago. Yes, it's very difficult to be patient and very, very hard to deal with setbacks. But I'll get where I want to be in time.
And I hope and wish you will too! Even when thoughts aren't pitch black, living through our situation isn't a easy...
I am retired now and grateful that I dont have to deal with bullying colleagues any more.
Last week, my husband went away for 7 days and I was looking forward to the break, as was he. We love each other dearly but the revelation that I am on the spectrum, although totally unexpected came about following a stressful episode where I lost control and ended up phoning for medical help, where a medic spoke to me and was able to help.
My husband does go to visit his family and friends once a year and I stay here to catch up with some 'me time' and do my own quiet things.
I did shut down and shut out other people from my life during the week. I got up when I wanted, at 7, or 11, and if I wanted cold food, I had it when I was hungry. I went into town on one of the days to collect a prescription and some milk and only spoke to anyone I wanted to if they spoke to me. I get on well with one of the assistants in the supermarket (she has autism in her family) and when I got home, I shut the blinds, locked the doors and went with the flow of my day as I wanted/needed.
By the end of the week I felt refreshed and so did my husband whou has been running around enjoying visiting everyone like a blue arsed fly.
The point I am trying to make is I feel it important bot to be joined at the hip 24/7 if it is possible to have a break sometimes.
His family have never understood my difference but hubby is telling the family peers that I am awaiting formal diagnosis and its up to them if they want to come here or not, or invite me over. They will have to decide for themselves now whether or not to receive me into their lives. At the moment, after 20 years of not being integrated, I can take it or leave it and so can my husband. Of course, if I become palatable enough now, we will give it a try but if not, no change there but at least we as a couple know what he and I are dealing with .
Sorry to rattle on, but the dynamics are changing, some for better, some for worse. He and I can deal with it. Everyone else will have to deal with it to but now, bot just on their terms
Hope this helps some on here.
😊
I recently watched a video interview he did with a guy who worked with suicide victims. It was called "Empowering 'something' ' something ' Mental Health ' something '. Having trouble remembering the exact title
For me it was getting diagnosed with ADHD at the age of 56. And then "with strong autistic traits" a year after that.
It's turned everything upside down. But everything needed turning upside down because it was already the wrong way up. Now it's the right way up and I can begin, maybe, to understand/build/enjoy a life.
After the diagnosis, not immediately because it takes time, you begin to realise how much you were masking and then you begin to start unmasking. This looks a lot like, "got diagnosed and then got worse", or the much nastier, "playing up to the diagnosis". But it's just unmasking. Keep doing it. You didn't know who you were before, so you made these masks with "ordinary person" painted on them but it's not been real and that's why we have many of the experiences we have. Not because people have a Spectrum Detector in their heads that spots autistic and ADHD people, but because we're so tied up in knots fighting for existential existence within ourselves that we can come over as false, trying too hard and intense.
If you don't know who you are, how are you supposed to relax? How are you supposed to do the thing that's most commonly spoken as advice, "just be yourself", if you're wearing a mask?
And then you start to realise all the ways people have been mistreating you, albeit based on their own ignorance, as you've been mistreating yourself based on yours, but now you know, so that too begins to unravel, or at least, can be unraveled.
Someone said to me when I'd first joined an ADHD Group on FB, "welcome to your new life. It will cost you your old life." I thought they were being melodramatic, but it has a lot of truth to it. Though I think it's more to do with the old life dying, as it was based on ignorance and misunderstanding and probably a ton of being gaslit, and blamed and made to feel like a useless waste of oxygen and food. There's nothing quite like being told that if you just tried harder that everything would be OK when you've already done the best you could do and don't understand why you can't do better. This probably started at school, fairly early and carried on up to when you built a wall so high no one could get at you behind it or you found out what was actually going on.
But it's also quite wonderful because I don't wonder anymore. I don't whip myself half to death over every past and present mistake, blunder, misjudgement, 'open mouth, change feet' experience, etc. I no longer feel bad for needing the things I need. This is a great unburdening. (It has gone hand in hand with losing my faith, which has also been a great unburdening.)
Very good 👍 I concur
So beautifully articulated.
Yes.
Yes to all of it.
This made me cry.... it's exactly how I feel. I cry for my parents too, who both struggled with learning disabilities and quit school at 16 because they couldn't manage. Both had addictions and many troubles. My father died by suicide at age 29 from depression. They had me,, an ADHD baby. I have struggled my whole life and its ongoing and I also quit school.
I have a new psychiatrist, and got rid of the one I had for 30 years that had it wrong. At 57 ,, I see things changing in me. I'm exhausted emotionally from showing up as others expect me to be. I'm done with it. I'm burnt-out. I think my new Dr will see what i see.
I also have worn compression undergarments since my 20's knowing that it made me feel more comfortable out in the world. I never told anyone, not a dr. Not a friend or family.
Great video! I'm 72 years old and have been suspecting that I was autistic for 2 years. Last year, I got the diagnoses. Yes, I went through all stages of grief and also had a whole life review of what I'd done better if I'd known.
I first thought I may be on this spectrum when I read Temple Grandin's book " Thinking in pictures" . I could so identify with most everything she was describing , I thought" oh my am I autistic too ?" It was a while back and I didn't pursue it , to much other life to try to manage , but now I am again seeing that I am realizing some functioning difficulty getting to be more of an issue .
I'm 44 and just some formalities away from my diagnosis. The only reason I didn't get one sooner is because of the assessment questionnaire. I (and many others) interpet the questions litterally. I don't flap my hands so 0 points ( I have audio stimms), I also don't get EXTREMLY upset, I just get very upset by suprises. 0 Points yet again. So I would get 33 points on the RAADS and thus "you're not autistic" bs. Once my friend explained what they actually mean, I got 147 points (130 is the cut off score). I just wish the assessement systems were actually suitable for autistic people. Like writing questions from our point of view, or the questions were explained to us so we can give more accurate answers. Which would lead to more people getting a diganosis.
The lack of support I got growing up is just one part of my current chronic illnesses. I haven't worked for 8 years. Before then I only managed part time. With my multiple chornic illnesses, I can't work at all, yet I still get 0 support. Hopefully my autism diagnosis will put me over the line and get the support I need. I just want the answer to why I'm the way I am and why I have been depressed on and off all my life.
For me the RADD-R was the Kobayashi Maru. The idea that I had to know whether I did "x" as a child, adult, or both is ridiculous.
@@NondescriptBrunette That's just to assess if you had it as a child or not. Usually we remeber stuff like that. It's the ambiguous questions that get me. It's difficult to answer when you don't fully understand the question. Not only that, these same questionnaires are used by both children and adults. We shouldn't be filling in these alone, the psychologist should do it with us and talk about the questions and ask follow up questions.
My favorite is "do you use any social codes to behave normally in society?" Like, doesn't everyone? We all use social codes on what's acceptable behaviour. That doesn't make you ND. "Do you take things litterally" I take these questions litterally, but at the same time I understand that feeling butterflies in my stomach doesn't mean actual butterflies. So how should I answer? Do I or don't I? The nuance is lost in translation.
@@SailorYuki yes I know that's why it exists. It was still difficult for me.
same
Definitely DONE with trying to force myself to fit into Societal Expectations
Found out at 54. It really explains a lot. I still haven't convinced my dad that it's not an "excuse". The parts that make me sad are that I'll never be able to type properly. I've been trying since I was 12. I also realize I'll never be able to play guitar for the same reason. I have to see my fingers to get anything correct. I does explain why I've never been able to throw, catch, or balance properly. It also explains why I've felt like a 12 year old kid around peers most of my life. I still don't feel 55.
This is exactly what I'm going through currently. I work in mental health and a couple of months ago a psychologist I work with told me they feel I could be autistic. It was mooted when I was a teenager by mental health professionals but due to a rather unusual upbringing it was decided that my 'quirks' could be due to a lack of proper socialisation in childhood. I'm 35 now and have spent the past 20 years with autism mentally 'off the table' so treating my difficulties like anxiety and assuming that if I continue to push myself to do the things I find really aversive or anxiety-provoking then things would eventually become easier and things would 'click'. I've been so good at masking at work that I'm considered very competent and an expert in my field, however the exhaustion it caused me meant that my home is never clean, I get behind with bills, basically just have nothing left in the tank to achieve things in my personal life. I'm now trying to navigate a tumult of emotions - everything you describe in this video. The grief, anger and confusion were things I wasn't expecting and it's been so helpful to hear you outline precisely what I'm experiencing so I feel less alone.
I also recognize the pushing your self part. I was always anxious about phone calls, but with regular practice it went tolerable. But every single time there was a gap of practice, I was back to square one.
I have a long way to go, but knowing that there are things I am not meant for makes it easier to make the inevitable mistakes, and accept myself. The worst part was beating myself up in my head. My tip would be to prioritize accepting yourself and learning to ask for things or doing things that are good for, but you have denied until now. I need to remind myself about this as well ;)
@@stephr7637 wow thanks for this. Very very very similar here. Couldn’t relate more. Hope it gets good for you buddy,
I’m 72 and got my diagnosis a few weeks ago. I have spent my whole life feeling defective and that it was my fault. I am processing many, many emotions, and you have named them here. I hope I can learn to stop blaming myself for my perceived failings and make better choices for myself going forward.
I recently went to my first attempt at getting diagnosed at 59 years old. The man who was there do my assessment told me your not going to like this when I first walked through the door. He asked me why I thought I was autistic and I told him. He told me then that he could not do an assessment because he had to talk to my parents that is the only way. He then told me that people out grow autism and that He hated to call me a liar but He said anyone could look in the DSM V and find symptoms they have but it means nothing. I was furious so I ask him if he was done now he said yes I got up and walked out. I WILL BE GETTING A 2ND OPINION.
Where did you get your evaluation at and how did the assessment take form. Please tell all about it. THANK YOU ❤
Hi, thank you for making this. I'm 53yrs female and got my diagnosis last year. Everything you have said is me all over. I feel like I've lived my whole life wrong. I'm now trying to learn what I like. I keep getting told "well you don't look autistic". I'm in a burnout now, I don't go out as it is so overwhelming. And yes I have no money!
I know exactly where you’re coming from. I’m also in my fifties and just been diagnosed. I’m also experiencing burn out. It really gets my goat when people tell me “it’s my super power”. It really makes me laugh! They’re soooo wrong.
My late diagnosis has been a nightmare for me and my family. At least we have a direction to work towards.
Yes keep this attitude
So don't need any nightmares. Maybe I should cancel my appointment with a psychiatrist? 51 and still debating.
@@sharonagoren6751 it was a nightmare before the diagnosis, just the nightmare has an identity
Got my diagnosis 2 days before my 37th birthday in 2021 and even more confused and isolated now than I was before when my family just called me the crazy one. I don't reject my diagnosis but my family does, and completely disregards what it means for me and how much of a struggle life has been so far.
Finding help is a lot harder than just hiding from the world so sticking with the latter until the world comes to find me
💙🌍⏱🌎💙
I've always wanted myself to be considered normal. I've never been diagnosed with anything and I never wanted to be, but I knew there had to be some reason why I struggle with things that my friends and colleagues have no trouble with. As I started looking for reasons, the doubt crept up. "It's all in your head. There's nothing you can scapegoat for your inadequacies. There's no reason why your best attempts produce bad results.You're simply worse; simply a failure." Then one day, videos such as your own started showing up in my recommended. As I watched you and 'I'm Autistic, Now What?', dots started to connect, and the straw that broke the camels back was a conversation with my mother talking to me about my childhood. Without knowing about my current dive into the autistic community, she told me that she thought I might've been autistic because of the way I played as a little kid, but ultimately never got me tested. The example that stood out to me most was that I'd line up my toy cars side by side and then just sorta stare at them all for awhile, satisfied with my Sick Line-Up Skillz™️. This was a stereotypical autism portrayal I often saw in media in my preteens and teen years. What a very surreal few weeks it's been! I have my first appointment with a psychiatrist tomorrow so I can seek out diagnosis. I've got quite the journey ahead of me, so thank you for helping me take my first steps! ❤
Thank you.
Thanks for that. Diagnosed with ASD at 59 (ADHD too). While the ASD is not unexpected (though I wished they'd called it ASC), it is annoying, as it's now certain there's no fix (however unlikely a fix may have seemed before). The immediate good news, however, is that I can stop wasting energy hoping for what can't be done. Time to start considering what might be possible.
I am also 59 and my first attempt to get a late diagnosis was a complete failure since this person to do it was clueless about late in life diagnosis. Where did you get your diagnosis and did they have to talk to your parents as mine are dead and he told me it was impossible to do the assessment because he had to talk to my parents. He then said I hate to call you a liar but well. Any advice and info will be very appreciated thank you 😊
C for complex?
@@Ivy20242Condition
@@cherylroberts5100Sorry to hear about your experience. My parents are also deceased, but an old family friend was able to supply some information. I also had some documentary evidence, such as school reports. My assessment was carried out by Psychiatry-UK, following an NHS referral from my GP.
I am 77 and this is a light bulb moment for me! I have been diagnosed with anxiety, depression, and cptsd,but it’s autism! My youngest son was diagnosed at 9 with Asperger. I have always felt on the edge of groups never fitting in . Cannot stand noise in a group of people and have to escape , I can hear and smell things which don’t bother others. I ve also realise that I stim. It’s all exhausting because when I leave my flat it’s like stepping onto the stage to act.
Being at last diagnosed as autistic at 63 was sooooo liberating! Until then my brothers thought I was a retard and I almost beleived it myself.
I finally received my diagnosis at the age of 54. I was so incredibly happy and relieved, I wanted to shout it from the rooftops and throw a celebration party. I wear it now like a badge of honor.
Posted 14 mins ago?? I’m 3rd to comment??? Wooo!
😂@myself
Fyi - I’m a 42yo woman who has been suspecting since Nov / Dec - BUT have been recently *owning it* and finally has a July appt to begin the assessment process. ❤️🔥🙏🏼❤️🔥
(“Official paper” or not… thanks to amazing and relatable content creators such as yourself… I already *KNOW* what I am, what I’ve always been, what I now know better and can work **with** instead of *against.*)
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
This is what I needed to hear. I'm 32, I was diagnosed 12 days ago. And yeah, I'm still struggling, grieving, feeling lost and hopeless
@5:20 I feel this. I was diagnosed with ADHD as an adult and have not yet been tested for ASD. My bitterness, resentment, and outright fury over my wasted life (growing up being told I would remember if things were important to me, yelled at for being late, etc) is a daily - _daily_ - struggle to push aside. Many times I’ve thought about cutting off my parents because they gave up searching for an answer after they were told “girls do t get it” when my brother was diagnosed and instead just blamed me for every shortcoming. The inability to let that go and move forward with life instead of being stuck in the pain is just 🤬🤬🤬🤬🤬😱. I don’t even have the words! (My kid is ASD and we think I probably am as well, just haven’t requested testing.)
A lot of parents are a kids worst enemy , uh... including mine .
I have gotten past it , but yeah it's a voice in your head that is hard to ignore ...
I had many of these reactions, but I also felt relief when I realized that many of the problems I'd had in my earlier life came from autistic burnout and not something "wrong" with me.
I never had a honeymoon period. First, I was stunned. That lasted a couple weeks. Then, I was ANGRY. I could only think back to the decades of therapy I've had and remember the countless times I brought up a problem caused by autism only to be told that it wasn't really as bad as I made it out to be or that I just wasn't trying hard enough. Of course, the only reason I was diagnosed was because I requested the assessment. Afterwards I asked for help--some real, evidence-based tools, advice, or therapies that I could use to improve my life only to be given the list of books you'd find if you searched Amazon for "adult autism."
It has been a couple months and I haven't quite simmered down.
I was diagnosed in my early 30's after my son was diagnosed. I was relieved, but also angry. I had been operating under the assumption that I had a mood disorder, and I could just "fake it till I make it" and be normal one day. When I acknowledged that was just not going to happen for me my life became easier. I was angry at all the time wasted, but I feel more confident in raising my son. We relate to each other quite a bit. Sometimes it's difficult to remember neurotypical people exist.
Lol , they do ," but they are dumb" 🤭 Lol 😆
My feeling overwhelmed is an understatement. I'm self diagnosed. The clinics only care about 21 and under, no adult services. At this point, where my childhood trauma processes have had some years of work, I feel this fully forms a disability. I am barely wanting to function. The few things in my life with some repetitive stability have kept me going. They're not going to last though and when any changes to it happens, and it will, I fear my mind will not want to go through it? The ptsd trauma therapy taught me a lot, and some coping, self care. This autism spectrum won't turn out well. I see me clearer than ever, and knowing explains the failures and ongoing crisis circumstances with my longtime marriage. Failure is the future and disability the reason. There won't be a diagnosis, so I see why people become hopeless, perhaps homeless? I fear many things at this point and must turn off, but I have a mind that thinks too much.
Orion, my 23-year-old son has not yet been diagnosed, but we are hoping this can happen as soon as possible (on a couple of waitlists) as he has been unable to thrive at adulting and now we know why it has been so very difficult. I really appreciate your videos, as there is so much I need to learn in order to advocate for my son and to support him. He is currently about a month into his recovery from burnout, and it has been a heartbreaking experience for me so I cannot imagine how he feels. As I learn through your videos I am becoming better at knowing how to interact with him. I wish I had found this out when he was young, but here we are and we begin the journey.
I wish I had a family member open-minded and loving such as you. I can't imagine anyone talking this way about me or taking the time to learn more about autism to give me a hand. Your son is very, very lucky to have you by his side. I'm not sure if you're close with your son but I hope he knows how much you love him because you are his rock that he needs.
Great video. Dating can be a good subject and communication can be lost , even trying to explain your autosm
This was timely for me to watch as a woman in her early 50s who was finally officially diagnosed 3 weeks ago, after a lifetime of struggling to function in an NT world. This was so accurate and resonated very much with me. Thanks Orion, your content is imho the best out there. I love how you speak directly about the truths of being autistic.
If I may suggest, I think some content about the NDIS for us autistics here in Australia might be useful. I know for me personally being advised by my psych to apply for it has been quite scary and it's hard to know how to begin with something like that, let alone know what actual supports are available for adults on the spectrum. As far as I've been able to find there seems to be no really user friendly information out there about the subject.
I'm a 29 year old guy who just recently figured out that he has a mild case of Asperger's and Autism. But I also have ADD and ADHD and one reason why I was never diagnosed in highschool or growing up was because my counselors didn't want to have me labeled.
Thanks Orion. “Golden ticket to the land of misfit toys” - well said. Thank you for your recommendations and uplift 👊🙏🏻
Just over here crying at 2:30am. I’m starting the evaluation process right now at almost 34 and I’ve never felt so seen and understood as I do watching this video. You nailed every single thing that has been flying through my mind lately…
Thank you, I just came out of the honeymoon phase, and you perfectly described how I've been feeling. I'm so tired, feeling hopeless, lost, and yes, very angry. More at the world than myself. I've worked so hard to get where I am, I've been trying to tell people this for years without realizing it. I was made to feel crazy, broken, and worthless. Turns out, I was RIGHT, and that makes me so angry at the world and the people who claimed to care and refused to listen. Maybe it's kind of messed up, but it's where I'm at right now
54 and newly diagnosed. Thank you for this Orion. I am not alone! And I will have my very supportive spouse listen to this so he has a better insight into all that I am feeling. This is spot on for me. You are changing lives through your videos.
Been late diagnosed about 2 months now and since finding your channel it has been very helpful and as helped me understand.
I may have been diagnosed at age 22 but people failed to look out for me growing up. Only my mother knew there was something up.
I still love her.
This is so timely, thank you. Diagnosed four years ago at 51. For a few years I was thrilled that I had answers, now I’m really struggling with anger, loss and a lifetime of unmet needs and being misunderstood. I have ME as well and I’m convinced the two are connected. A lifetime of repetitive burnout and forcing myself through it because I felt like a failure. It’s hard not to feel bitter at times.
It's my journey, and anyone who can't deal, well, it isn't theirs to deal with. I take people for who they are, as we all should.
Thanks for sharing this, Orion, just in time.
Age 57: ASD + ADHD + menopause = not ok. Thank you for this video.
I'm in my 40s. A part of me can't wait for menopause because my periods are always too much. What's menopause like for you?
This is so me. I’m 51. Just self diagnosed about a month ago.. suffered from CPTSD, anxiety all my life. The ADHD and Autism are so spot on. This video is like a story about me. The employment difficulties are rough. But the bad family is the worst part.
I needed an answer as to why I have these uncontrollable meltdowns and why virtually any confrontation triggers tears and an inability to explain or "defend" myself. I've been labeled rude, psycho, retarded, not acting like an adult (i.e. immature) Sometimes my raging scares ME and I wonder, "What the hell is wrong with me?" Do I have borderline personality disorder? Am I bipolar? Watching your videos, I know know what I am. The trigger one really opened my eyes. Thank you.
I got surprise diagnosed when I had a breakdown at 35. I would have lived my life completely differently if I'd known my limits. But when I got the diagnosis we realised my 70 yr old dad also was, and that's got to be a whole thing. Mind you back when he was young they still had jobs that weren't all about customer service so he could have a career and in many ways people had an easier time before the 1980s...
i never would have sought out for myself if a friend of mine, who became close to me during college and became witness to so many of my private thoughts and actions, asked me if i ever considered that i have autism.
it's been months since, and every single discussion on autism resonated with my entire life experience. i cannot formally claim that i have autism, since i have yet to seek diagnosis and i am currently in therapy for panic disorder. i have tried taking so so many tests, and i seem to have scored above the average of the scores of those diagnosed with autism.
this video just spoke to me. i'm almost 26, and i feel that i am in a paralyzing situation that i can't move forward from. i have long thought that i was just a late bloomer, growing up socially inept since i spent more time on computers instead of making friends. i played catch up, and it worked great, i was great in doing something akin to what people describe as 'masking'. still, i had many clashes i had with people, and there were numerous times i asked myself, and others, why i felt like i never had true friends. eversince, i've made great lifelong friends who were patient with me along the way, but since the pandemic, we've all been distant from one another, pursuing our own careere, and meeting up once or twice a year. i love to be alone, but it sucks to be alone. i've just indulged myself in so many hobbies that my life went into standstill. i never moved forward. even until now.
all that's to say, thank you. even though i do not have formal diagnosis yet, these videos spoke to my heart, and somewhat, and for once, i felt heard. when for so long i have felt so misunderstood.
I just turned 47 and am hoping to have my diagnosis within the next couple of weeks. I finished the assessment process about a month ago and am waiting on the results. This video was awesome and very relevant to my life right now. I'm anticipating some rough weeks ahead, trying to sort out what's going on inside. But also some relief.
Great video, diagnosed late at 56, explained so much and help me understand myself better, but so much to learn about the ‘new me’ I thankful that now my family accept my Autism, yet when I first broached the subject with them they where very anti even angry with me. They said I was nuts. Thankfully they have come around and are now very supportive. I’m burned out and really struggling at this moment in time. Your channel helps so much, I have learned so much from. Your presentations. Thank you
This is very accurate for my experience. Thank you for sharing. Late diagnosis of autism and ADHD for me. Had speech therapy at a young age, and missed hundreds of days of school but because I was considered very smart I was told it was depression, generalised anxiety, panic disorder and insomnia, and psychiatrist later thought possibly bipolar type 2. Only now does it begin to make sense that all my breakdowns, stress vomiting and shutdowns were actually an autism thing. I feel those of us with above average IQs are able to mask and appear ‘high-functioning’ or ‘low support needs’, maybe eccentric or sensitive or antisocial and obsessive, but never really get any supports and end up so tired we can barely function anymore into later adulthood. I’ve tried as hard as I can for a long time, but recently broke down so badly I couldn’t speak and it’s been a difficult adjustment process. I doubt myself and tell myself I need to just work harder and be less sensitive, but then my whole body aches and I can barely eat or think and cry for weeks at a time. It’s a difficult adjustment, especially when supervisor said ‘autism is like a superpower’, but they don’t realise I vomited and cried all day over the stress of attending a work function where I didn’t have enough information, or that my heart palpitations were so bad when I couldn’t get the food I normally get that strangers rushed me to the hospital. But externally I work hard to ‘seem normal’ and so people think I’m just quiet and nerdy. They don’t realise that this is a persona I’ve had to adopt because it is the best way I can make myself agreeable to other people. I don’t like people to think of me as ‘disabled’, but then I have to acknowledge that no matter how many extra hours I put in, or how hard I try, there is a boundary that I can’t seem to get past, and no amount of trying and self-disgust can motivate me to be other than I am. I still have a job, but had to extend my leave on really short notice once I couldn’t control my crying anymore. So part of me is a bit worried I’m going to get fired. But I also have to acknowledge that there’s nothing else I can do at this point. I’ve reached my limit and I hate that, but I can’t deny it anymore because I’m on leave now and can still barely do anything.
Reading your post is like looking in the mirror. My inability to maintain employment is the part that bothers me the most. If I'm lucky and keep all the feelings internalized and mask like nobody's business, I might stay with the same company for a year, rarely longer. The bullying and harassment as well as the constant stress of masking cause me a lot of physical, emotional, and mental difficulties. Stress vomiting, meltdowns and avoidance of "social" situations at work and "after work" functions quickly get me labeled as an unsuitable and unstable employee. My current job is different. There's quite a few neurodivergent and developmentally disabled people working there. We don't stand out as much and so we don't draw the fear, resentment, and retaliatory behavior common in many workplaces. The ability to work alone, take breaks apart from the others, and being able to use headphones go a long way towards helping me adjust to the noise, and stress of being around so many people for such long periods of time. That being said, I would never tell anyone at work that I'm on the spectrum. I think it would limit my chances for advancement within the company and I would one day like to work in the quality lab where my nit picky attention to detail would be an immense benefit
This video is so affirming, and all that you say here mirrors my late diagnosis with ADHD. It’s relief and grief.
I’ve gained the insight into why I think like I do and why it’s awesome. I’ve also lost so many years to depression, failure, and self hatred. Now it’s not only the challenge of understanding myself , but it’s teaching the people I love about it. Sometimes there is buy in, but sometimes not. It’s so hard to believe I’m not crazy, but what’s helped more than anything is listening to podcast communities and CZcams communities and realizing I’m not alone. Its hard to underscore how important that’s been for me.
A great book to read is "The Undercover Autistic - Navigating Your Diagnosis" by Leigh East. She goes greatly in depth with understanding your diagnosis and living with autism whether self-diagnosed or formally diagnosed.
My husband of 15 years was just diagnosed last year at the age of 57. His diagnosis came only after a threat of divorce if he didn't figure out what was going on with him. I had suspected autism from the beginning. After the diagnosis was confirmed, now comes the struggle of him refusing to do anything about it other than a snails crawl of self directed improvements. In other words little to nothing. It has really created a divide between us. I feel for him, I do, as I always have, but at this point he can't bury his head in the sand anymore... But continues to anyways. I'm frustrated to the point of shutting down and just feeling cold and empty. He is his own worst enemy.
There are many beautiful things about being autistic. The one not so beautiful is his ability to dig in to thought processes and behaviors that are not good for him or good for the marriage.
Thank you for making these videos. Late diagnosed myself, and it has been eyeopening. I would like to see a video about grief and bereavement.
It’s the next video I’m working on!
Great subject thanks
Very helpful. I was diagnosed at 45.
I've experienced a late life diagnosis, at around 54. Before I continue though I want to say that I appreciate and value your videos. Please be careful about challenging people concerning punching you through your camera. I don't consider myself to be a hacker, but many people, even like us, might perceive that as a challenge. Otherwise, please keep up the good work. I have learned a lot.
This is *the* most informative channel I subscribe to. Every time a video goes up I feel like Orion is talking directly to me! And this one is no different. I suddenly had a realisation during this: some of my family members have always disliked me and I've never known why. I've always tried to be helpful and do as much for them as possible, even when they've been absent from my life for several decades. But no matter what I've done they've always been two-faced with me. And now I think I know why: I'm very possibly autistic and they don't understand me or the way my brain works, and no amount of explanations are going to help, those relationships are done and they're better off out of my life. I just wish I'd gotten to this point sooner so my aunt and I could have gotten on better while she was alive. I miss her more than I ever though I would. The rest can do one!
Diagnosed a year ago at 42. Finally finding the answer I was searching for felt so amazing. Took me a solid 6 months to process the grief and trauma of my “old” life. My therapist is autistic also, she’s been such a bright light helping to guide me.
Just stumbled on and watched this.
A phrase that helped me from when I got my late diagnosis is "I am still me". Yes, there is masking that one needs to look at/potentially dismantle, but for those who struggle to find their core, take a day off, do something nice to yourself, take a walk in nature and just think back on what you loved doing as a kid, what interested you before any adults or others told you their judgement.
It might not help everyone, but for those that still connect with what their younger self liked, this can become a very good anchoring point going forward.
After I got my diagnosis and looking back on what I liked and what I considered my strengths, as well as getting tools to deal sensory overload and other issues, I managed to enter a bachelor's degree program in summer 2018 and complete a Master's Degree in summer 2023 with only a months delay on taking the final exam due to other health issues.
“Or, like me, you’re just a bad person who was born to struggle and suffer…” delivered deadpan, that made me lol!
But only because I know the reality behind it. My intake for assessment is in one week. Thanks for the laugh!
Hi Orion,
At 49 years of age 5 weeks ago I had a late Autism diagnosis.
I have OCD as well diagnosed when I was 12.
Your video Resonated with me, at first I thought "Well I kind of knew" then a week later anger and sadness, that if I'd have known 20 years ago I could have changed so much.
I've copied all my life people's interests, speech mannerisms and now think of I stripped that all away "Who am I, what is left , who is my authentic self.
Now I do not mask as there's no need to and regard myself as just Neuro Divergent as it covers both conditions.
Thanks Orion for literally discussing how literally I've felt with my late Autism Diagnosis.
Mairtin 🇭🇲
I'm in my mid-fourties and I just got my diagnosis a couple weeks ago. The assessor did such an accurate job, her assessment sounded like she had took a few pages out of my journal, if I had kept one. I now know that the difficult goings-ons in my life was primarily because my brain is so different from most people's. Now I'm stuck with what I should do with this new information. It feels weird to start my life, again, this late into my life.
I need to find my people
Where do people meet online? I don’t participate in Facebook, and that is the only online forum I’ve seen available. (I’m not sure I want to commit to in-person interactions, which have always been exhausting.)
As always, great video Orion!
I'm a late diagnosed autistic who was first officially diagnosed summer 2022 when I was 43. And I'm a poor masker so it was apparently very obvious to also the psychologist and a psychiatrist that unofficially diagnosed me autistic before that. I only have my NT/allistic husband as my main support person. No friends (or maybe 1, not sure if we are or not) and finding and maintaining friends has always been a major struggle for me my whole life. Unfortunately. The same goes for getting a job, never mind maintaining one! That's despite me having 2 degrees, one even being a Master's degree. Knowing I'm autistic has been very helpful in some ways though, like I now know why life is so incredibly difficult. But it doesn't change the fact that I'm still very much ostracised and rejected by society. I've only recently been trying to find autistic friends. Was in a Facebook group for autistics but had to leave because I was autistic "wrong" I think: not a good masker, no job, flat affect (facial expressions) and fits too many of the stereotypes. So it's hard to find support unfortunately, only my husband is truely there for me.
Be grateful you have your husband. My partner also has ADHD and is probably also on the Autistic spectrum, we clash constantly and it's becoming too much (again). I hope not but it looks my 4th long term relationship is about to break down.😪 Not sure if I can handle another break-up, the third already near destroyed me (sudden and made me homeless)and I've only recently gotten out of that depression. That breakup ripped a part out of me and it never grew back. I am a changed person because of that experience and a lot more aware of what human beings, even loved ones, are capable of, in a negative way.
Late diagnosed 2 years ago at 48.
Explained a lot concerning my life experience.
I also went through a significant grieving period, for the life I could or should have had years ago with proper accommodations and resources.
But can genuinely say it has been hugely positive to realise that I'm not broken, just different.
Great video, very relatable.
Orion you help me more than you will ever know you have actually saved me, thank you x
37 now, diagnosed 5 years ago at 32. this video is SO relatable
your videos are awesome - thanks!
I wanted to comment, because I'm so grateful for you! I'm going through this exact thing, after receiving a late diagnosis at age 44 two years go. I wish my family and friends could understand that, while nothing has changed for them, EVERYTHING has changed for me! And that's a LOT to deal with! I hope I can get the hang of this soon. Thanks again for starting this channel!
Diagnosed at 41, I spent most of my adulthood in active addiction. It was the only way I could socialize without feeling weird. I never understood why I needed that crutch. Im pretty sure I appeared the most autistic when under the influence. Eventually ppl didnt want to even party with me, I was always too much.
The days after were always hard because I would ruminate about what I said or did but yet do it over and over since it gave me courage to be socialable without inhibition. I wasnt violent or physical but socially intrusive and not conventionally attractive for a woman which is not a good mix lol.
After the diagnosis, it all made sense. I havent had the urge to drink since but Im still lonely. Im most comfortable being myself when Im alone. Ppl are draining and Im tired of pretending I like interacting because its what Im "supposed" to do. I like ppl on my terms especially when they understand my energy without words.
Diagnosed last week aged 49. It helps piece the puzzle together but also not sure what now.
My first drop in the bucket for realizing I am neurodivergent was a significant other telling me she thought i was a ‘highly sensitive person’ and then my mom reminding me a few times that a teacher advised her to get me assessed. Now that I’ve deep dived into adhd and autism, I’m constantly checking to see if it’s really true. I don’t know what to do but I know I’m done with psych and I don’t want the stigma of a diagnosis. I’m also a woman and black. I’ve already experienced too much medical neglect and have depression and anxiety diagnosis’. I’m tired. Hoping these videos help
Sadly I know people that were diagnosed as adults that had been working in their job for 10 years or longer, they didn’t ask for accommodations. However someone they worked with found out that she had Autism and suddenly she started getting all this criticism, where as before at work she had been receiving favorable reviews, raises, and picked for special projects. She eventually had to change her job out of fear of them ruining her employment record. Thank you so much for all your videos and honesty. You and your content are extremely helpful.❤️💜💚♥️💕
I usually feel invalidated and alienated, but this makes me feel seen and understood. Thank you.
This was phenomenal - thank you. I've been trying to create my own CZcams videos on my channel about processing a late diagnosis but you've said everything here just perfectly already. This is just great!
It gives some relief that I've been trying a few of these, unknowingly, by instinct.
On the other hand it's not that simple.
Seeking support here - in Hungary - is almost impossible so it seems.
I've already found a group but still, other autistics don't really seem to be wanting to really connect. So I don't know...
Education and patience... I get it.
However, we've been in the middle of everyday life for years now, gotta survive each day, working etc. In the end of the day after a certain age, and totally alone, how you spare extra time in the midst of all other struggles when even 16 hours in a day is barely enough to get by
I'm not diagnosed as autistic (but i definitely have several traits that point toward it), and I was diagnosed with ADHD at 31 after losing a job that I probably could have kept had i known what was going on with my brain and requested accommodations. I was literally the "weird one" who was "disconnected with the rest of the unit" at my last hospital job
I told my mom that I thought I might be on the spectrum. She said it was not possible because my teachers would have noticed. I then took two online tests, and they both said it was likely.
I see the price of an assessment and tell myself I can wait. But I will still make an effort to get it done.
Oh man. I did this myself with my daughter. I was wrong. Teachers often don't know or won't say. Follow your instincts. All the best to you.
My journey…. Abbreviated….. as parents my then wife and myself took our daughter to the docs stating her development was misaligned with the milestones she should be meeting…. We requested an ASD assessment on 12 different occasions between the age of 2.5yrs and 12ams and on each time was dismissed. Aged 13.5 we were accused of poor parenting and taken to court to fight to keep our daughter out of the foster system…. This court case took many months, cost hundreds of thousands of tax payers money, involved an extensively large legal and medical team. That medical team included 4 indépendant medical experts, they ALL said autism!!
The outcome of that was lots of support for my daughter (eventually, although we still have to argue and fight for most things for her). In this process it transpired that she had inherited from me a genetic abnormality (15q11.2 deletion) which seems to be the root cause. As a result of discovering the gene deletion, I researched that 23% of those with the deletion also have ASD. So I got assessed privately and et viola I have asd. It explains so much in life. However at the grand old age of 53 I can not envision any changes or support. As an adult there were two periods in my life when I went ‘dark’ and had a year and a half off work to recover from depression. Looking back could this have been ASD burnout do you think?
Additionally I was told I have an unusual sensory profile, possibly SPD. Fir thirty yrs I engaged in full contact martial arts, white water kayaking, and rugby. All high impact sports in which I received a significant number of breaks, strains, tears and concussions. Yet I kept going back for more and more. In Taekwondo I was given the name iron man on account of my propensity for pain and suffering.
I realise now this was me grounding or centring myself and keeping an attachment to the physical world around me.
It was the psychologist that diagnosed my daughter that said… you could well be autistic too… that then inspired me to go get assessed.
Just diagnosed at 31. I’m everything in this video and I’m absolutely exhausted and scared to death to be around people. The world looks so different overnight! It’s tripping me out!
Diagnosed just over a week ago - I'm 52.
I have really struggled for the past 2-3 years and have done so much research into why I am tired all the time. Have had sleep studies which found that I have severe OSA, more blood tests than I can remember, hospital admissions and been sectioned 3 times. I stumbled across the idea that I may be autistic. Did online tests that suggested a high probability of autism. Then it was on to the struggle of being assessed and diagnosed. Anyone reading this can no doubt relate to that struggle, the time it takes, the rejections and finally the diagnosis.
I came across this channel from the National Autistic Society website forum and it is exactly what I need post diagnosis, so thank you so much @Orion for this video - so much resonates with me.
We just had testing done for my 18 year old. Surprisingly to all of us they said she was not autistic. She has "generalized anxiety", "ADHD inattentive type", and "major depressive disorder, recurrent, moderate". How can you honestly diagnose someone with autism in 3 hours, doing paper "tests"?! We've known for years she was different, she's known for years she's different. We had different testing in elementary school, middle school, now high school autism was mentioned by someone. I NEVER would have thought about it because i myself was ignorant to the characteristics and thought "she's an all A student, she loves school, it can't be ASD"! I had no idea about (I know some don't like the term) but high functioning versus the scale of non-verbal. Once we started researching it was light bulbs all over! OMG!! Check all the boxes, yes, she absolutely has all of the characteristics and it explains SO much about how she is socially, and the burnout and overwhelm! She just wants the validation, someone in the field to acknowledge it and confirm, even though we're 99.9% certain. I don't think she will rest until we get it, but I'm lost now as who else to see or what else to do!
I was diagnosed at 50 and now at 52 in on a pathway to an adhd diagnosis. Your videos are helping me so much. Thank you x
This video is everything! And miraculously-timed! I was just diagnosed at 40. My life has been crumbling for the last 6 years because I had unknowingly gone into the wrong job for me. During my years there, I have been continually discriminated against for being trans and (now I know) also for my autistic traits. My manager even said to me once that if I wanted to get ahead, I needed to be more extroverted. I’m also trying to get accommodations now and it’s pretty much impossible to get them at work at this point. Even the ADA coordinator at work said I couldn’t be autistic because I communicate too well 😳 (Gotta love that people at my office with no medical background or lived experience can be the gatekeepers of accommodations 🤦🏻♂️). Never mind the fact that I’ve had to go on medical leave multiple times in the past for months due to burnout. I’d be better off setting the expectation of accommodations from the beginning whenever I start a new job. I’m trying to get out of my current one, but it’ll take some time and I’ve also started a lawsuit against my employer. When that’s over, I have no idea what to pursue career-wise. The fact that my employer kept me at an extremely low level for the past 6 years and counting, despite my advanced education and previous work experience, is really going to hurt my chances in applying for anything more appropriate to the level of work I can do. I lived most of my life doing what my parents thought I should do, instead of what was right for me. Now I’m working on remembering what my original interests and strengths were, although some of my job ideas would require going back to university, which I know some people do, but I’m not sure I can, given various reasons, and it makes me sad that it may be too late to pursue the dream careers that I had when I was younger. And now there’s also the need to consider my being autistic and trying not to set myself up in the kind of job that will ultimately blow up in my face. I’m grateful for that knowledge now of having a better idea of what work places or jobs probably wouldn’t be right for me, but that also narrows the options down a lot in an already impossible job market. And with my poor interviewing, before I landed my current awful job, employers were never interested in me even when I applied for anything and everything, despite having a master’s and graduating with honors.
This video is a perfect summary of my feelings and life. As a late-diagnosed autistic adult (at the age of 30), this is precisely how I feel.