Same! I could've written this post :) I was definitely on the child-to-parent pipeline, where one of my kids presented more "stereotypically" (AKA checking boxes on the 18-month and 2-year-old milestone surveys at the pediatrician's) and prompted us to pursue evaluation/diagnosis mainly to get accommodations at school. Two and a half years later, three of the four of us in the family are officially diagnosed and the last one--me--has no doubts about my neurotype. I also love Devon Price's work and was a faithful fan of TACP for awhile (I'd heartily recommend Matt Lowry's new podcast and FB group). So glad to be one of those welcoming you to the club!
Yes... not diagnosed with ADHD until 56, and pretty definitely AuDHD. Didn't live the life I should have. Knew things were wrong but not why. Running out of road now, but enjoying things more. Diagnosis in your 30s is... not perfect... but good ☺️
"By that time, I was venturing out and self-identifying as “neurospicy” online and fully settled into the truth of my autism with my partner."
That is exactly where I am at, and sometimes it makes thinks so much lighter, not having to explain how I feel but just having both of us naturally acknowledging this part of me.
My best friend got her diagnosis last year, but I don't feel the need to go through the troubles to make it official at the moment.
It feels so great to have more and more people to identify with <3
Happy to be able to talk about it :) I feel the same way with my partner; it's nice sometimes to be able to say, "This is probably my autism, but...." and not have to explain any further.
I was formally diagnosed with level 1 autism last summer at age 50 after being misdiagnosed with ADHD the summer before. The latter never fit but helped me understand that I was in perimenopause (I was still having regular periods). My husband pushed me to test again, and this time I found someone who did much more thorough testing and interviewing with me and people closest to me. I'm glad I did. I wrote a little bit about the relief I've felt in having a name for what I experienced my whole life back in December. https://www.almostsated.com/p/permission-to-exist-as-yourself-the-greatest-gift
I don't think you need to have the formal diagnosis, Dana. It's a personal decision, and all your reasons for not doing it are completely valid, and the fact that you're accepting you have it is enough to get the benefit from it.
Thank you! And thank you for sharing your experience, too. Misdiagnosis sounds like a weird challenge all on its own. I love your framing of "permission to exist as yourself" — that's EXACTLY my experience.
Hey Dana! Thanks so much for the mention. I really appreciate that.
Also, I recognise so much of what you wrote here—but then, that shouldn't come as a surprise, seeing that I'm also a late-diagnosed autistic.
I did, actually go through the process of getting an official diagnosis (just for the validation, which shouldn't matter, but still did) and it was no fun. But at least I can now tell people to bugger off when they tell me I can't be autistic, because hey, I got an official diagnosis. Weird, how that's even necessary, right?
It's so weird! But I totally understand that urge. Sometimes I'd like to have the official diagnosis to be able to frame my autism certificate so people can't question it.
Thanks so much for the work you do! It's been so helpful around my house with neurodivergence and chronic illness galore :)
I self-diagnosed in my mid-30s. My middle sister has been diagnosed since childhood, but then my younger sister got an AuDHD diagnosis at 20 and my niece was also diagnosed with autism. My partner at the time was also undoubtedly undiagnosed AuDHD and I started to realise the people I got on with best were too. It finally clicked when I realised my years of anxiety/depression/OCD/chronic fatigue were actually autistic burnout. The hardest thing about accepting this diagnosis was that my middle sister pushed back on it. It felt like she was gatekeeping autism, because in her mind, my life has been easier than hers. In reality, I was just better at masking, my special interest were more socially acceptable and I had pretty-privilege (although I'd argue this has often not been a privilege and instead made me more of a target). I'm still processing it all, but it has made such a huge difference to my life understanding my body and brain through this lens. I really related to what you've said!
I love this post! Thanks for sharing this with the internet and thanks for bonding with me over this when your book came out and I messaged you about loving that you and Marian were friends! Her book was transformational in my journey as a still not formally diagnosed almost 39 year old! I also would love to plug Dr Megan Anna Neff’s work with Neurodivergent Insights. More AuDHD focused, but great visuals which is easier for me to process.
I'm really grateful for you sharing this part of yourself with us, Dana! Hi right back at you, I'm neurodivergent, also self-diagnosed, also later in life. I'm highly sensitive, which is the best language we've got so far for people like me. In the venn diagram of neurodivergence, I have some autistic traits (but am not autistic), I have some ADHD traits (but am not ADHD), and I have a whole bunch of other neurodivergent traits that are unique to whatever it is I am. I don't particularly care about ever having a formal diagnosis (if/when one ever exists), but I do wish there WAS a diagnostic name so people could understand, in a bite-sized way, why I am the way I am. That said, identifying it even just for myself was an incredible relief.
So helpful just to be able to name it for yourself! (And it's no surprise to find so many of the folks in this thread that I've been chatting and connecting with for years are also ND :)
You've gathered a really great bunch of misfits here! (Speaking of, my partner is also self-diagnosed-in-adulthood autistic and it has been *extraordinarily* helpful to us wrt my ND brand of Big Feelings and his ND brand of Total Overwhelm with them 😂)
This is so validating, Dana, thank you. I’ve spent the last five or so years in the self-identifying in the maybe/probably/maybe category, with only a few people in my life who really buy it — for exactly the reasons you’ve outlined. Yet I often feel such a shock of recognition when autistic people talk about their subjective experience, and I often find it easier to be around autistic people — but most other people don’t experience me as autistic- seeming. So I just live in the maybe/probably/maybe…
Thank you for sharing this experience, too. That invalidation is so tough. I'm grateful to have a partner who validates all parts of my identity (see: bisexuality essay coming next week!) It's a big help to have that foundation to return to.
Yes Dana! This was excellent. Like you I’m also self diagnosed through deep self study and a kind psychiatrist who suggested i check in with my parents about childhood evals. Turns out, they had me evaluated, knew I was and didn’t tell me!
Reading Unmasking autism and talking with my autistic friends made me build real solidarity and resilience, looking back at much of my young life with tenderness and newfound compassion. Thanks for sharing so much here. Very excited to read more of Dr. Angela Kingdon’s work!
Loved Unmasking Autism! What a strange experience to have your parents know your diagnosis while you didn’t! I can understand that decision in context; I wouldn’t have wanted a diagnosis when I was a child, given the culture and misunderstanding of autism that existed at the time.
Same! I could've written this post :) I was definitely on the child-to-parent pipeline, where one of my kids presented more "stereotypically" (AKA checking boxes on the 18-month and 2-year-old milestone surveys at the pediatrician's) and prompted us to pursue evaluation/diagnosis mainly to get accommodations at school. Two and a half years later, three of the four of us in the family are officially diagnosed and the last one--me--has no doubts about my neurotype. I also love Devon Price's work and was a faithful fan of TACP for awhile (I'd heartily recommend Matt Lowry's new podcast and FB group). So glad to be one of those welcoming you to the club!
Oh! I didn't know about Matt Lowry's new podcast. Thank you for that rec!
Yes... not diagnosed with ADHD until 56, and pretty definitely AuDHD. Didn't live the life I should have. Knew things were wrong but not why. Running out of road now, but enjoying things more. Diagnosis in your 30s is... not perfect... but good ☺️
"By that time, I was venturing out and self-identifying as “neurospicy” online and fully settled into the truth of my autism with my partner."
That is exactly where I am at, and sometimes it makes thinks so much lighter, not having to explain how I feel but just having both of us naturally acknowledging this part of me.
My best friend got her diagnosis last year, but I don't feel the need to go through the troubles to make it official at the moment.
It feels so great to have more and more people to identify with <3
Happy to be able to talk about it :) I feel the same way with my partner; it's nice sometimes to be able to say, "This is probably my autism, but...." and not have to explain any further.
I was formally diagnosed with level 1 autism last summer at age 50 after being misdiagnosed with ADHD the summer before. The latter never fit but helped me understand that I was in perimenopause (I was still having regular periods). My husband pushed me to test again, and this time I found someone who did much more thorough testing and interviewing with me and people closest to me. I'm glad I did. I wrote a little bit about the relief I've felt in having a name for what I experienced my whole life back in December. https://www.almostsated.com/p/permission-to-exist-as-yourself-the-greatest-gift
I don't think you need to have the formal diagnosis, Dana. It's a personal decision, and all your reasons for not doing it are completely valid, and the fact that you're accepting you have it is enough to get the benefit from it.
Thank you! And thank you for sharing your experience, too. Misdiagnosis sounds like a weird challenge all on its own. I love your framing of "permission to exist as yourself" — that's EXACTLY my experience.
Hey Dana! Thanks so much for the mention. I really appreciate that.
Also, I recognise so much of what you wrote here—but then, that shouldn't come as a surprise, seeing that I'm also a late-diagnosed autistic.
I did, actually go through the process of getting an official diagnosis (just for the validation, which shouldn't matter, but still did) and it was no fun. But at least I can now tell people to bugger off when they tell me I can't be autistic, because hey, I got an official diagnosis. Weird, how that's even necessary, right?
It's so weird! But I totally understand that urge. Sometimes I'd like to have the official diagnosis to be able to frame my autism certificate so people can't question it.
Thanks so much for the work you do! It's been so helpful around my house with neurodivergence and chronic illness galore :)
I'm glad it's helpful.
I self-diagnosed in my mid-30s. My middle sister has been diagnosed since childhood, but then my younger sister got an AuDHD diagnosis at 20 and my niece was also diagnosed with autism. My partner at the time was also undoubtedly undiagnosed AuDHD and I started to realise the people I got on with best were too. It finally clicked when I realised my years of anxiety/depression/OCD/chronic fatigue were actually autistic burnout. The hardest thing about accepting this diagnosis was that my middle sister pushed back on it. It felt like she was gatekeeping autism, because in her mind, my life has been easier than hers. In reality, I was just better at masking, my special interest were more socially acceptable and I had pretty-privilege (although I'd argue this has often not been a privilege and instead made me more of a target). I'm still processing it all, but it has made such a huge difference to my life understanding my body and brain through this lens. I really related to what you've said!
Thank you, Lou! It’s so illuminating to come to this realization, but it does come with so many years of what-ifs, too.
I love this post! Thanks for sharing this with the internet and thanks for bonding with me over this when your book came out and I messaged you about loving that you and Marian were friends! Her book was transformational in my journey as a still not formally diagnosed almost 39 year old! I also would love to plug Dr Megan Anna Neff’s work with Neurodivergent Insights. More AuDHD focused, but great visuals which is easier for me to process.
I'll check this out, thank you! And yay to Marian — look at her work changing lives!
I'm really grateful for you sharing this part of yourself with us, Dana! Hi right back at you, I'm neurodivergent, also self-diagnosed, also later in life. I'm highly sensitive, which is the best language we've got so far for people like me. In the venn diagram of neurodivergence, I have some autistic traits (but am not autistic), I have some ADHD traits (but am not ADHD), and I have a whole bunch of other neurodivergent traits that are unique to whatever it is I am. I don't particularly care about ever having a formal diagnosis (if/when one ever exists), but I do wish there WAS a diagnostic name so people could understand, in a bite-sized way, why I am the way I am. That said, identifying it even just for myself was an incredible relief.
So helpful just to be able to name it for yourself! (And it's no surprise to find so many of the folks in this thread that I've been chatting and connecting with for years are also ND :)
I was once told that if you have a few neurospicy friends, it's time to look in the mirror, because birds of a feather flock together :)
YES!
You've gathered a really great bunch of misfits here! (Speaking of, my partner is also self-diagnosed-in-adulthood autistic and it has been *extraordinarily* helpful to us wrt my ND brand of Big Feelings and his ND brand of Total Overwhelm with them 😂)
This is so validating, Dana, thank you. I’ve spent the last five or so years in the self-identifying in the maybe/probably/maybe category, with only a few people in my life who really buy it — for exactly the reasons you’ve outlined. Yet I often feel such a shock of recognition when autistic people talk about their subjective experience, and I often find it easier to be around autistic people — but most other people don’t experience me as autistic- seeming. So I just live in the maybe/probably/maybe…
Thank you for sharing this experience, too. That invalidation is so tough. I'm grateful to have a partner who validates all parts of my identity (see: bisexuality essay coming next week!) It's a big help to have that foundation to return to.
Yes Dana! This was excellent. Like you I’m also self diagnosed through deep self study and a kind psychiatrist who suggested i check in with my parents about childhood evals. Turns out, they had me evaluated, knew I was and didn’t tell me!
Reading Unmasking autism and talking with my autistic friends made me build real solidarity and resilience, looking back at much of my young life with tenderness and newfound compassion. Thanks for sharing so much here. Very excited to read more of Dr. Angela Kingdon’s work!
Loved Unmasking Autism! What a strange experience to have your parents know your diagnosis while you didn’t! I can understand that decision in context; I wouldn’t have wanted a diagnosis when I was a child, given the culture and misunderstanding of autism that existed at the time.
This is such a good article Dana! And thank you so much for the mention 💙
Thank you! And of course :)