Late Autism Diagnosis in Adulthood (Learning to Move Forward)
My autism diagnosis was extremely late. Receiving a late autism diagnosis at age 40, I had already lived half my life. Suddenly, I had to learn how to embrace being Autistic while balancing the very real responsibilities that coincide with being an adult. There were many times I did not know how to move forward, often juggling between masking and embracing my newfound Autistic identity. Learning to be OK with who I am, which is an Autistic woman and mother, took time. However, I did eventually get there and I now make videos to help others in their journey of pursuing and receiving a late autism diagnosis in adulthood.
00:00 Introduction
00:16 Relief in receiving an autism diagnosis at age 40
01:54 Apologizing to myself
03:30 Trigger Warning
03:57 Forgiving myself
05:38 Was it discrimination?
06:36 Seeking understanding
06:54 Depressed and lost (round 1)
07:47 Trying to negotiate the terms of my autism (bargaining)
09:31 Resentment
10:54 Depressed and lost (round 2)
11:35 Learning self acceptance after late autism diagnosis
12:42 Becoming an Autistic self advocate
14:13 Thank you and please comment with your thoughts!
#actuallyautistic
#autism
#autismacceptance
Wow, thank you for sharing. It's exactly what I needed to hear. It's been less than a month since learning I'm (counselor diagnosed, but not officially tested yet as locally there's a long waiting list and a high cost) autistic. I have so much to learn, but I've already experienced thoughts and several of the stages that you describe. It helped me a lot to not feel alone and to accept the emotional journey this will be.
Re: Cost and wait for "formal" diagnosis : FYI Jeremy Andrew Davis on KZhead did a really good, and, to me anyway, surprising, video on self diagnosis. It might be of interest 🙏. IMHO an experienced counsellor with good training and wide experience with Autistic people is a reliable viewpoint - can be more so than an average Doctor etc
Thank you so much! Reeling from last week's confirmation of self-Dx (age 59). Pushed myself SO HARD my whole life. Thought I'd gone through all of the steps after self-Dx - denial, grieving, bargaining, resentment, sadness, but it keeps cycling through. Thank you for walking the rest of us us through this powerful, life-changing and difficult time.
Congrats on the diagnosis! 🎉 I know it's hard, so many feelings all at once. It does get better. Unfortunately the frustration over the injustice of it all stays. Hopefully our community can change that soon 💛
When you started saying "you did a good job", I straight up started crying... part of processing my late diagnosis for me was realizing how cruel I was being to myself for my entire life, for something I have no control over. Being able to say, "you were doing your best" is SO hard to hear, even coming from myself, but it's SO important that we can tell ourselves that, and it's the only way I feel I like we can start our healing. Thank you so much for sharing.
Thank you for your kind words 💛 Agree, there must be an acknowledgement in order to move forward in a heathy way. My biggest challenge has been in understanding how to create a new life that doesn't rely on all those toxic coping mechanisms to function. It's been a process, establishing healthier boundaries while still having to meet all the obligations that come with being an independent adult and parent.
Well, I think we did far more than our best.
Thank you for including both your negative self talk and your forgiveness of self 🖤 that was so cathartic for me, I appreciate your putting this piece in your video production.
I'm glad it was helpful, thank you for your support!
I was diagnosed at 60. I was working on processing grief of the death of a family member with a psychologist. She asked if I had ever considered taking being tested. I knew about autism from my raising my autistic, and hearing impaired son. I’m not like him, so didn’t think I would be on the spectrum. I always thought my difference was because I came from an ultra religious, strict family that were perceived as weird by others. My dad was a bully too. He liked punishing his children. My reaction the diagnosis was denial, numbness, depressed. Because once again I was “ not good enough, and autism can’t be fixed.” Thank goodness for a supportive husband. I am starting to accept my autism. Thank you for this channel.
I have a somewhat similar experience. I personally knew autistic people prior to diagnosis, but they were nothing like me. I didn't relate to them or their experiences. I also had a very domineering parent. I assumed many of the issues I experienced were due to that trauma. I'm glad you finally found clarity 💛
You made me cry for the child we gave such a hard time. 💔 been through the same process. So hard to move forward once I got to that self exceptance witha formal dx and to reinvent myself at 60 after raising 5 kids to become financially able to support myself. Feel helpless, hopeless tried just about everything over the years. So hard but I have to have faith 😊
When you began talking about your inner child, your story and description were SPOT ON … right down to the age of 7 (which is the age I attach to most of the childhood memories I recall). Wow, man. THANK YOU for your transparency - and the validation. ✨💪🥺✨
Glad it helps. She was such a dominate presence in my life until my diagnosis. Nowadays, I can firmly live in the present. Diagnosis is so pivotal in finally understanding and accepting yourself for who you are. Good luck on your journey 💛
@@ProudlyAutistic🧡🧡🧡
Thank you for sharing this. I was literally just diagnosed last week and I am on the rollercoaster now. I just turned 47 and I had been diagnosed with ASD, ADHD, and giftedness! It feels like I had been living a lie my whole life just to please others. My job, my family, and everyone else. I no longer have any friends, not because I am not liked, but I was getting tired of being manipulated or made to feel like I am different. Luckily I had already accepted myself and choose to love myself because I felt no one else did. Now I know my complete self, and my journey begins now! But now after my diagnosis I feel so alone, more alone than I ever have. I have subscribed to your channel as it sounds like we were on similar paths in life. I am a successful professional but a failure at being human, or what I was led to believe. I do not see myself as being depressed, just sad because I am so desperate to reach out to others like myself, to find a community where I am accepted and not judged. Where I am not taken advantage of by another narcissistic person. Thanks for making the channel and sharing your autistic brain. Sorry for the long comment. Thank you and take care!
Congrats on your diagnosis! I know, it's a lot of feelings. It's hard because no one understands what you're going through, but it DOES get better. And you're not a failure. Everyone tends to focus on how we're different and blame that on autism while glossing over all our amazing traits, as if those are all coincidental and have nothing to do with autism. What has helped me in recognizing my autistic traits that I love and make me who I am. It helps ground me and remind me that if people don't like me, that's on them and their ignorance, not me. FYI, I started a free online community that you can find at autistic.chat . It's still small but pretty active, I'm sure you can find someone to chat there so you don't feel so alone.
@@ProudlyAutistic Thanks 🙂
I didn't get an official diagnosis until I was Age 31. Prior to that, I always felt out of step and not able to keep up with others. At the same time, I had hobbies that really weren't common, and it was very hard to make friends. The lion's share of these challenges were overcome during adulthood. Having the diagnosis changed my outlook, and definitely for the better. Good video! 🙏
You put that together pretty well, and was informative. I really haven't seen anyone else address it and sum it up this way before. This video was really helpful. I think I'm older than you. But, recently I think I heard in a scientific type video that researchers are now finding out that around 90 % of adult Autistics over the age of 50 are still undiagnosed. That reality really needs to hit home in the Autistic and non-Autistic communities.
That seems accurate. The rate of autism is definitely much higher than reported. Even now, many females evade diagnosis in childhood (last I checked I think it was 80% diagnosed 18 or older). I suspect many men who didn't have academic challenges and completed school before the early 90s also evaded diagnosis in childhood. It was labeled as shy and quirky. It was understood we were different but no one cared to understand why.
I can't get over how many women are being diagnosed in their 40s with a staggering amount having been misdiagnosed with something else. im going through the diagnostic process, and this video is on my saved list now❤ so eloquently put❤ Thank you X
Yes, I suspect the rate of autism is actually much higher than acknowledged.... 3-4%.... due to so many undiagnosed women and individuals in older generations. Good luck on your journey 💛
@@ProudlyAutistic Thank you❤️
I am 53M and was diagnoses earlier this year. You were expecting Bi Polar and I was expecting ASD1. I was diagnosed as High Functioning ASD2, ADHD Inattentive, GAD and that led to clinical depression. That was a huge punch to absorb. You mention hating your younger self. As I (we) looked back at my life (as all of us adults do when we are diagnosed), I found myself missing the young man that I was before I discovered that I was different than everyone else. That was a happy a happy kid that was oblivious to the fact that he was different. Also not knowing what I should have known meant that I tried things that I shouldn't. "You can't do that because of XYZ". So because I didn't know any better, I'd do them anyway and sometimes I would succeed. Other thing that I should have know and should been preparing for, like College, I just didn't because I didn't know I should be. However as I grew, I realized that I was different and that I felt like an alien. I felt like everyone else got the "how to be a human" manual and mine was lost in the mail. It was then that I thought that I just sucked at being a human. Obviously I had issues that others didn't. Clearly I must be slow because everyone else seemed to get it. I was super hard on myself to just push harder and now I am like a worn pencil as I figure this all out. I was able to push harder and I have a respectable job as a senior level engineer. I've been employed by the same big bank for 28 years. But to get here, I crushed myself. And like you, I am trying to figure out how to be the person I should be. And like you, I've turned my Autism in to one of my Special Interests. If they figured out we were different in the 70's or 80's (for me) of the 80's or 90's for you, can you imagine what they would have done to us? I am glad we slipped through the cracks to get diagnosed later in life. Although it was rough on us, we would have been institutionalized if we didn't get missed. What meds and medical procedures would they have done to us? I am glad we missed that. We have gone done very similar paths and we finally have our answers. We are all here for each other and I am always happy to talk it over with others. Reddit has been a great place for us to talk too. Big hugs and great job both with your path and your channel. Thanks!
Thank you so much for this comment! Yes, one of my biggest challenges when I first was diagnosed was grappling with whether I would have wanted to know earlier? On one hand it might have saved me from a lot of emotional pain and perhaps I would have made better life choices with a better understanding of who I am. On the other hand, I recognize I would not have been as successful had I known early. I pushed through so much to be "normal", thinking I was going through the same experiences as everyone else, and it made me so mentally tough. Had I known that I was playing a different game than my peers, that I was Autistic, I think I probably would have given myself a pass and not tried so hard. Not to say that's a bad thing, but my life definitely would have been different. There's also the issue of how the medical establishment treated Autistic people at the time. I am at peace with finding out late, although it took awhile and I'm still irritated with the medical community. The funny thing is that autism isn't a special interest in the traditional sense. I'm pretty content with my understanding and don't necessarily need to learn every little thing. However.... I think the way we are treated is unacceptable and I recognize I have a talent for advocacy (I've been a management consultant to fortune 100s and other large businesses for many years). I have a teen daughter who is Autistic and I refuse to let another generation endure what we did without a fight. So that's where the passion is. Not so much the autism specifically, but in the injustice and needing change. Thank you for the reminder about reddit. I just created a new profile: u/IamProudlyAutistic I'll get more involved there once I get acclimated to running this channel (it's only been a month). Thank you for your support 💛
47 and still waiting for my "how to be a human" manual. Maybe there's a digital download somewhere. 🤔
I’m at the beginning of all of this. Just diagnosed at 48 and now I’m trying to get my head around what that means for me.
Your experience is so much like mine going thru diagnosis. I was diagnosed this February. I was 48. It was such a relief to know. I told everyone I am a really crappy neurotypical but a freaking amazing autistic person. I also, have accomplished a tremendous amount of things in my life. I pushed myself so hard. Nowadays I give myself more grace and I’m only pushing until it’s mildly uncomfortable, not until it’s traumatic. I may achieve less, but my peace of mind will be more. Thank you so much for putting yourself out there and being so well spoken regarding your experiences. Thank you for being an advocate for us ❤
Thank you for the kind words. It sounds like we're in a similar place. What threw me was that I simply could not push myself like I used to. All those years, I had an insane drive. Now knowing what was causing it, I can no longer get myself to that place. It was difficult resetting expectations, understanding that I can no longer be an overachiever. Grace and forgiveness have been major themes in my life over the past few years.
It was the other way round for me. Grew up thinking everyone else had issues 😀But same conclusion when I realized I was autistic and the vast majority were wired differently. I thought managing and getting through life given my hidden disability was rather bril so gave myself a pat on the back. No resentment tho. I understand they don't get it and they cannot relate and that's OK.
Thank you for sharing your perspective! It made me rethink things a bit. You're right, we can't be mad at others for what they don't understand, especially if it's not their lived experience. I think I may have another video idea....
Shared. And seconded 🙏
I cried when you cried. I'm awaiting my assessment and the weight of this is more than I can take most days. I am beyond exhausted and overwhelmed. I really, really like your content and I feel like I can connect with you. Thank you for sharing your story, it means so much 💜🩷
Thank you for your kind words. I know it can feel like your alone in this, but you're not. Many of us are on the same journey. I hope you are able to find clarity soon 💛
@@ProudlyAutistic Sometimes it really can feel like you're alone but being part of your channel and this community is reminding me that I'm not. I'm getting there slowly but surely. Thank you for taking the time to read my comment and respond. Have a lovely evening ☺️
you are definitely not alone. embrace your new found community ❤
yes I was ghosted by a few friends when I told them I was autistic, how sad. Not real fiends, clearly. Thank you for sharing all of this, truly appreciated.
I'm sorry that happened. I had a similar experience. I keep my circle pretty small because I have no patience for superficial people.
Thank you for sharing!
Profound.
thank you for sharing!
thanks for walking us thru this process with your story. we are all walking together. love this community
Yes, this community is pretty awesome 💛
Thanks for posting another great video!
Great video. I'm currently in my 40s seeking an assessment for autism waiting for at least a year to be seen by a medical professional here in the UK.
That's so frustrating! I hope you get answers sooner than later 💛
❤
I have so many of these feelings!!
Thank you so much for your videos.
This was seriously great and so helpful for me to hear. Thank you
I'm glad it was helpful 💛
Thank you for being vulnerable & sharing your story 🫶🏻 I’m recently diagnosed just shy of my 38th birthday…feel this to the core, your story means so much 🥹☮️
Happy belated birthday! 🥳 Yeah, I was diagnosed several days before my 40th. It was a memorable birthday, sigh... I'm glad my story is helpful, you're not alone 💛
👍🏿
Thank you so much. My energy level right now is sufficient to enjoy the video content and the comments. So relatable. Grateful my efforts over time have me understanding my capacity for communicating is limited and that is not bad. I expect I'll share more another time. I'm 72. Not diagnosed. Full of half- told stories and untold stories. Your videos are being received as a treat!
Agree, absolutely NOT a bad thing. We're just different and the world needs different perspectives 💛 I'm guessing you've endured quite a bit, I'm sorry for that, but I'm glad that you seem to have made it out on the other side. Thank you for your support.
Wow! Thanks for making these videos theyre very helpful. How would your life be different if you got diagnosed with BPD instead? Kinda scary to consider
It's hard to say. While it didn't completely "fit", it seemed plausible. It was definitely closer to anything else that had been presented. I'm AuDHD, with my ADHD much more apparent than my autism. It's extremely obvious I'm an ADHDer as I have a difficult time managing it. My autism, however, is hidden unless I'm under stress. I think I would have assumed it was BPD and possibly attributed any behavior inconsistent with BPD to my ADHD. I also have complex PTSD (unrelated to autism), so that's also why BPD didn't seem like much of a stretch. I'm not sure how much a misdiagnosis would have impacted me. However, it might have had significant impacts on my daughter. Once I was diagnosed, I immediately realized my daughter, who is my mini-me and was struggling socially, was also Autistic. This knowledge allowed me to push for her diagnosis. It ended up taking 18 months, but finally I found someone who could see past her giftedness to recognize the autism for what it was. I'm not sure if that would have happened had I not been diagnosed. We might have just assumed she was gifted and quirky. It's really hard to say. Getting her properly diagnosed is the most important thing that came from my diagnosis.
Why are these doctors, medics and educators not trained to be aware of this disorder. Begs belief when 1+ in 100 people have autistic traits. Surely it should be part of the training. People could be spared so much suffering if it was realised earlier. My daughter went through absolute hell because NO-ONE BOTHERED TO CHECK. I did not realise until she was 18, by which time, the damage was already done, she was bullied and abused by her peers at school because she was ‘different’ and became depressed and suicidal because she didn’t know she was autistic either. Makes me so angry !😡
There's so many reasons. I'll be doing a video on it in the future. I also need to cover gender bias which is not exclusive to autism. Did you know that, when compared to men, it routinely takes women sometimes years longer to receive a correct diagnosis? Even with relatively straightforward conditions like cancer, diagnosis for women can take over a year longer than men. It's horrible. I also have a daughter who is Autistic. The only reason she got diagnosed when she did (age 10) was because I had been just diagnosed and knew what I was seeing. It took 3 practitioners and 18 months before someone finally recognized it. Had I not had my own experience, I might not have recognized it or been more inclined to believe people when they said she was just gifted. Try to give yourself grace, you did not know 💛
I think you could help a lot of people if you were an Autism Architect. What would you have in a house or a building for autistic people and all people who live there that an NT one would not?
I actually do provide consulting to address our challenges, however, I specialize in commercial applications, not residential, which is very different. I haven't given it too much thought, but I suspect practicing feng shui in the home would be a good first step. There's other considerations too for sensory challenges, but feng shui is a fairly straightforward design approach that many can adopt into their lifestyle.
You seriously need to take a survey - you need to survey how many late diagnosed Autistic womens' prior earlier doctors and psychs asked to get the info about the person's childhood. None of mine did - they totally blew it off. One psych only saw me for 2 minutes and that was her entire basis for diagnosing me with OCD. I now know that by definition is medical malpractice because you can't rule out an Autism diagnosis as the proper diagnosis in 2 minutes and without taking any childhood history info. I don't think doctors and psychs before 2010 took the childhood info about people who later became diagnosed with Autism. That's because it just wasn't a thing on their radar because they didn't have knowledge about how Autism presents in women and they didn't have knowledge about the high rates of undiagnosed Autistic women then. So they just skipped over this vital childhood info without which THEY NOT ONLY COULDN'T RULE OUT ASD BUT ALSO COULDN'T MAKE ANY OTHER PROPER DIAGNOSIS. I'm just thinking if you took a survey, you would get very high numbers of late diagnosed Autistic women who would say their Autism diagnoses were missed because their earlier doctors and psychs didn't bother to take any of their childhood info and take it into account in making a diagnosis.
I think they assume if you made it through childhood undiagnosed that you're not autistic. Then when you consider that most female children weren't even considered capable of being autistic, it's no wonder we evade diagnosis. A big part of the problem is that they focus on the wrong things and seem to go for the easiest answer. They're very quick to diagnose anything other than autistic. In my case, I had a traumatic childhood so they made everything about that.
@@ProudlyAutistic They can't make that assumption and they know they can't. They know around 90 % of Autistic adults over the age of 50 are undiagnosed. On that basis alone, they know they don't have any factual basis to make that assumption. And, it's not true that older Autistic adults were undectable on the theory that if they 'made it through' they couldn't have been Autistic enough to be detected. That's all bunk. My life is a perfect example of the extreme harm that assumption has caused. My Autism was very detectable when I was a little child - I had an obsession with TRAINS and spinning wheels like Autistic boys, among other things. And, you couldn't possibly call my life "making it through; or 'being successful,' or 'holding a job,' or 'masking so it was undetectable.' Everyone referred to me as broken and a problem and it was in their face all the time. The truth is medical schools failed to give doctors and psychs Autism educational training, and society didn't get any such knowledge, either. So, we got harmed and injured over and over, and brutalized, and lived on the edge of such extreme survival we almost died many times over literally due to our Autism not being admitted, It's very inexcusable. And, really, we as a population deserve reparations for all this harm and neglect, and the statute of limitations for suing for med mal should be eliminated so we can sue those earlier doctors who deliberately fucked up. There isn't any excuse anyone can give me for not recognizing my Autism as a small child, and my entire life would have gone differently. The Autism parents are always complaining about their grief over the child they wanted that they didn't get; well, that doesn't even compare to Autistic adults' grief over the life that was taken away from us that could have been, that was replaced by constant bullying, denial of opportunity even when we worked for it, and all the labels of being bad, broken, and sub-human. Sorry - I can't excuse the misconduct of Neurotypicals who did this to generations of now Autistic adults.
How many visits did it take?
4-5 with that particular psychologist. Although I've been in and out of psychologists/psychiatrists offices for decades. I recommend seeing someone who specializes in autism on adults (bonus if they understand any.comorbidities you might have).
@@ProudlyAutistic I love your vulnerability to tell me that. I just got out of my first appt with my new therapist and I wondered how long it would take. I didn’t tell her I suspected autism because I would rather her not be biased. Your video was so good it made me cry. I will be watching all the new ones!!