I am 39 and have self-diagnosed via the RAADS-R over the last few months. I am also exploring the possibility of a formal diagnosis (and have a kid on the spectrum and have come to understand my dad is also autistic). But at this point, whether I diagnose formally or not, I’ve understood that I’m probably autistic and the more I accept that to be true the more I come to understand myself and the rest of my life also snaps into focus. But MY GOD the grief for the undiagnosed child that’s come up for me has been very overwhelming. Anyway, you’re not alone on this journey 🩷
I’m 48 and came to my self-diagnosis similarly. My therapist who specializes in neurodivergence pointed me to the RAADS-R and encouraged me not to pursue formal diagnosis for the usual reasons. He can’t perform an official assessment but he says he’s confident that I am autistic and the self tests he directed me to seem to confirm it as much as they can. It clarifies so much and woof, the grief for my younger self is so unexpected. Even through my 20s and 30s, I think about how things could have been so much easier if I’d known.
A new study also found the RAADS-R is accurate in identifying autistic adults. My therapist doesn't know much about autism in high-masking adults so I had to explain some stuff to her and I sent her the study along with my score on the RAADS-R and she went away and did some reading and came back ready to process it all with me, which was really great that she believed me so quickly. https://journals.sagepub.com/doi/10.1177/13623613241228329?fbclid=IwAR22JRvK7-LOUr5JR2jzNTT5hlmGUf4DazP1MQFCRZeloHHTgJKz48MEMq4
The RAADS-R was the very first thing I had to do, but it’s been such a long road since. I have my final in-person session today in about an hour and a half. We’ll see what tappend.
Ha ha ha YES, I've made a digital stamp for my friends who are "pretty sure" but feel like they need the official diagnosis. Like, Hello, we are the authority.
Thank you for writing about this. Diagnosed a week before my 38th birthday, I turn 40 this Tuesday and have had a wild 2 years of processing this part of myself.
That's a tough question to answer because I think it's ongoing. At first I went through and tried to understand the way that these supposed Autistic traits showed up in myself and my personality, so I could better identify it in myself and explain it to others. Learning about something has always helped me feel more empowered, so I have done a lot of that. Consciously 'unmasking' is another thing that has been difficult, but I am actively working on. I believe that finding community is really essential but I still struggle with that in general, especially as someone who is late diagnosed.
I'm so grateful to you for putting these experiences into words. Diagnoses have evolved for me throughout my adult life from "recurrent depressive disorder" (yuck, what a life sentence that felt at twenty) to "postpartum psychosis" at thirty, "bipolar disorder" at forty. A functional and incredibly well decade has now come to me head-to-head with my autistic teenager wondering whether I also have a sensory processing disorder and other neurodivergent ways of experiencing the world. I turn 50 soon and would prefer the diagnosis of "medicine woman" but the dratted mania and psychotic episode made a return this year.
How do you manage the times when your mental health symptoms flare? Do you identify with being dysregulated rather than 'unwell'?
When my mental health symptoms are flaring, I buckle down and try not to drown. It seems to always be a crisis, although I endure less severe symptoms on a daily basis. I do identify with being dysregulated, but I do also identify with being unwell. It’s never the same thing ever day. I want to be comfortable. That’s always my goal.
Thank you for sharing this very sensible aim Esme - to seek ways to be comfortable even in the midst of waves of crisis. Your words are a tonic, thank you. N x
This sentence “He leaned slightly forward, looking me right in the eye. “I strongly recommend that you go through this entire process.””. Yikes! Although there seemed to be some clues along the way.
What books or other resources were most helpful to you in this journey?
We self-diagnosed ADHD when my kid was little (formal dx for kid a year ago at 10yo; still just self-dx for me bc accessing services as an adult is more challenging than for kids), but it took having my kid dx'ed with autism last summer for me to recognize how much autism could explain my own life experiences.
There are two main books: Unmasking Autism and We’re Not Broken. I’d like to read Neurotribes as well—I know the author somewhat, and I know he’s read The Collected Schizophrenias. There are so many books out there, but those are the ones that I think are most helpful.
I'm the parent of an Autistic teenager, and she and I are listening to the audiobook version of Unmasking Autism by Devon Price Phd, who also had a later-in-life autism diagnosis. It helped me understand how deeply traumatizing and scarring masking - pretending to be neurotypical in social situations - is to Autistics. And how much better life is for my kid when I relax and worry less about whether she knows the damn social rules/norms; and more about how she can develop her unique gifts.
Maybe the term "neuro-diversity" has replaced it. This term seems more broad, or across the boards, so any quirk of the nervous system, or sensory sensitivity, could be included. More inclusive, but of what, exactly?
On the spectrum meant to me low to high functioning, and aspergers, which often has bits of genius embedded. Also, spectrum always meant aspergers to autism specifically.
Thank you for sharing this with us, Esmé. I've been exploring various aspects of myself that may result in a diagnosis of some kind, and it's so meaningful to read your words -- so many of them resonate -- and feel a little less alone + a lot more connected to what it means to go through a process like this. Wishing you peace and affirmation as you make your way through the rest of "the entire process." ♡
My kid was diagnosed with autism at 16 two years ago. We’d suspected they were on the spectrum since they were very little, but their symptoms didn’t align with how autism was diagnosed in the early aughts. We were told it was oppositional defiance disorder, anxiety, etc and given AB protocols (which thankfully, we did not follow). I’ve since learned so much about autism, suspect my mom has it (for a while the running diagnosis for her was bpd) and I also am considering going through the testing process for myself. I love what you wrote about having a diagnosis. It resonates.
You’re an amazing mom, and I love how you support your son. The mind is such a confusing thing, and to learn to live with one is one of the most challenging things in my life.
One of my high functioning clients refers to himself as on the spectrum. I appreciate that description, as in a rainbow and a slide guitar have a spectrum. There is a range of sensitivities and responses and the ability to grow, especially in relationships.
I know so many women who have recognized their own neurotype after their children have received a diagnosis of ADHD or ASD. Clinicians—and parents, and teachers, and other caregivers—haven't been trained in how to recognize this in women and girls because—as is so often the case—men and boys are the research norm.
How did it feel as, someone of Asian heritage? I’m only asking because so many of us have parents who would feel that they’ve failed because their kid, minor or adult, has some sort of “issue.” I’m neurodivergent myself - ADHD (possibly misdiagnosed. I’m more likely autistic)- I’ve never asked my parents, but I’m pretty sure they think they did something wrong.
My mom was very critical when I was 16 and first seeking out mental health care (this is described in my second book). She’s made a lot of progress since then, and she’s fine with my seeking out an assessment. In fact, she thinks that she’s autistic as well.
She was okay with you going into therapy at 16? Wouldn’t you have needed an adult to consent? Or was this suggested by your school (I haven’t read your book yet)? Or were you an emancipated minor?
I saw the school counselor, who believed I needed more help than she could give me. My mother eventually agreed after the counselor called her at home and said I could wind up dead.
Putting together the many pieces in my maternal lineage over the last year as my second kid, 16 yo was diagnosed - at their urging, my brother’s two kids, my brother, cousins, myself. Only kids have formal dx but sibs and I feel we all are. It explains so much. I think on the whole it is a positive to claim it and live more authentically and demand better care/accommodations.
Diagnosed at 38, three years ago - welcome! It's a fantastic club! And although I say that in a jokey way, I do mean it. I made that discovery by myself, with no one to guide or support me during that process, and it was a mindfuck. What has helped me the most is finding others - a few of them were right, there -- my friends -- who had no idea or were just discovering it about themselves or their children, and be for them so they wouldn't have to go through that shit alone. And then finding more (and collecting my friends and lining them up - just kidding). But really, community - and I actually discovered A BUNCH of diagnosis at the same time, so the disabled community in general - has helped a lot. So many painful experiences seemed to be unique to me, and finally discovering other people who understood - and understanding together that a lot of them were actually very unfair... It has made a world of difference.
So thanks for joining us, and for opening this conversation and this space. Yes, it is a big thing to absorb, and at our age, such a big shift in our sense of identity. But for me, it's been freeing. I wish you so many good things on that weird, beautiful journey.
I’ll also add that getting diagnosed with autism was the best day of my life and I really would appreciate folks saying it’s not “worth” it because accommodations etc.
there is so much more value in diagnosis than just an elusive piece of paper at the end.
I am 39 and have self-diagnosed via the RAADS-R over the last few months. I am also exploring the possibility of a formal diagnosis (and have a kid on the spectrum and have come to understand my dad is also autistic). But at this point, whether I diagnose formally or not, I’ve understood that I’m probably autistic and the more I accept that to be true the more I come to understand myself and the rest of my life also snaps into focus. But MY GOD the grief for the undiagnosed child that’s come up for me has been very overwhelming. Anyway, you’re not alone on this journey 🩷
I’m 48 and came to my self-diagnosis similarly. My therapist who specializes in neurodivergence pointed me to the RAADS-R and encouraged me not to pursue formal diagnosis for the usual reasons. He can’t perform an official assessment but he says he’s confident that I am autistic and the self tests he directed me to seem to confirm it as much as they can. It clarifies so much and woof, the grief for my younger self is so unexpected. Even through my 20s and 30s, I think about how things could have been so much easier if I’d known.
A new study also found the RAADS-R is accurate in identifying autistic adults. My therapist doesn't know much about autism in high-masking adults so I had to explain some stuff to her and I sent her the study along with my score on the RAADS-R and she went away and did some reading and came back ready to process it all with me, which was really great that she believed me so quickly. https://journals.sagepub.com/doi/10.1177/13623613241228329?fbclid=IwAR22JRvK7-LOUr5JR2jzNTT5hlmGUf4DazP1MQFCRZeloHHTgJKz48MEMq4
The RAADS-R was the very first thing I had to do, but it’s been such a long road since. I have my final in-person session today in about an hour and a half. We’ll see what tappend.
Sending you lots of good energy and vibes!
Thank you so much. ❤️❤️❤️
My favorite autism assessment is the “peer review” — my autistic friends being like, hello 👀 I see u 👀
Ha ha ha YES, I've made a digital stamp for my friends who are "pretty sure" but feel like they need the official diagnosis. Like, Hello, we are the authority.
I love this.
Thank you for writing about this. Diagnosed a week before my 38th birthday, I turn 40 this Tuesday and have had a wild 2 years of processing this part of myself.
It’s a big thing to try and absorb, isn’t it? What’s helped you process it?
That's a tough question to answer because I think it's ongoing. At first I went through and tried to understand the way that these supposed Autistic traits showed up in myself and my personality, so I could better identify it in myself and explain it to others. Learning about something has always helped me feel more empowered, so I have done a lot of that. Consciously 'unmasking' is another thing that has been difficult, but I am actively working on. I believe that finding community is really essential but I still struggle with that in general, especially as someone who is late diagnosed.
I'm so grateful to you for putting these experiences into words. Diagnoses have evolved for me throughout my adult life from "recurrent depressive disorder" (yuck, what a life sentence that felt at twenty) to "postpartum psychosis" at thirty, "bipolar disorder" at forty. A functional and incredibly well decade has now come to me head-to-head with my autistic teenager wondering whether I also have a sensory processing disorder and other neurodivergent ways of experiencing the world. I turn 50 soon and would prefer the diagnosis of "medicine woman" but the dratted mania and psychotic episode made a return this year.
How do you manage the times when your mental health symptoms flare? Do you identify with being dysregulated rather than 'unwell'?
When my mental health symptoms are flaring, I buckle down and try not to drown. It seems to always be a crisis, although I endure less severe symptoms on a daily basis. I do identify with being dysregulated, but I do also identify with being unwell. It’s never the same thing ever day. I want to be comfortable. That’s always my goal.
Thank you for sharing this very sensible aim Esme - to seek ways to be comfortable even in the midst of waves of crisis. Your words are a tonic, thank you. N x
I appreciate you shedding light on this subject.
This sentence “He leaned slightly forward, looking me right in the eye. “I strongly recommend that you go through this entire process.””. Yikes! Although there seemed to be some clues along the way.
Looking forward to the next instalment.
I’m so glad. Part 2 is up now!
What books or other resources were most helpful to you in this journey?
We self-diagnosed ADHD when my kid was little (formal dx for kid a year ago at 10yo; still just self-dx for me bc accessing services as an adult is more challenging than for kids), but it took having my kid dx'ed with autism last summer for me to recognize how much autism could explain my own life experiences.
There are two main books: Unmasking Autism and We’re Not Broken. I’d like to read Neurotribes as well—I know the author somewhat, and I know he’s read The Collected Schizophrenias. There are so many books out there, but those are the ones that I think are most helpful.
I'm the parent of an Autistic teenager, and she and I are listening to the audiobook version of Unmasking Autism by Devon Price Phd, who also had a later-in-life autism diagnosis. It helped me understand how deeply traumatizing and scarring masking - pretending to be neurotypical in social situations - is to Autistics. And how much better life is for my kid when I relax and worry less about whether she knows the damn social rules/norms; and more about how she can develop her unique gifts.
Maybe the term "neuro-diversity" has replaced it. This term seems more broad, or across the boards, so any quirk of the nervous system, or sensory sensitivity, could be included. More inclusive, but of what, exactly?
On the spectrum meant to me low to high functioning, and aspergers, which often has bits of genius embedded. Also, spectrum always meant aspergers to autism specifically.
Thank you for sharing this with us, Esmé. I've been exploring various aspects of myself that may result in a diagnosis of some kind, and it's so meaningful to read your words -- so many of them resonate -- and feel a little less alone + a lot more connected to what it means to go through a process like this. Wishing you peace and affirmation as you make your way through the rest of "the entire process." ♡
I’m so glad this is helpful. Wishing you love on your journey. ❤️
My kid was diagnosed with autism at 16 two years ago. We’d suspected they were on the spectrum since they were very little, but their symptoms didn’t align with how autism was diagnosed in the early aughts. We were told it was oppositional defiance disorder, anxiety, etc and given AB protocols (which thankfully, we did not follow). I’ve since learned so much about autism, suspect my mom has it (for a while the running diagnosis for her was bpd) and I also am considering going through the testing process for myself. I love what you wrote about having a diagnosis. It resonates.
You’re an amazing mom, and I love how you support your son. The mind is such a confusing thing, and to learn to live with one is one of the most challenging things in my life.
One of my high functioning clients refers to himself as on the spectrum. I appreciate that description, as in a rainbow and a slide guitar have a spectrum. There is a range of sensitivities and responses and the ability to grow, especially in relationships.
It’s interesting to me that “on the spectrum” seems to be a phrase that’s fallen out of favor, and I’m not exactly sure why.
I know so many women who have recognized their own neurotype after their children have received a diagnosis of ADHD or ASD. Clinicians—and parents, and teachers, and other caregivers—haven't been trained in how to recognize this in women and girls because—as is so often the case—men and boys are the research norm.
Absolutely. That seems to absolutely be the case.
How did it feel as, someone of Asian heritage? I’m only asking because so many of us have parents who would feel that they’ve failed because their kid, minor or adult, has some sort of “issue.” I’m neurodivergent myself - ADHD (possibly misdiagnosed. I’m more likely autistic)- I’ve never asked my parents, but I’m pretty sure they think they did something wrong.
My mom was very critical when I was 16 and first seeking out mental health care (this is described in my second book). She’s made a lot of progress since then, and she’s fine with my seeking out an assessment. In fact, she thinks that she’s autistic as well.
She was okay with you going into therapy at 16? Wouldn’t you have needed an adult to consent? Or was this suggested by your school (I haven’t read your book yet)? Or were you an emancipated minor?
I saw the school counselor, who believed I needed more help than she could give me. My mother eventually agreed after the counselor called her at home and said I could wind up dead.
Putting together the many pieces in my maternal lineage over the last year as my second kid, 16 yo was diagnosed - at their urging, my brother’s two kids, my brother, cousins, myself. Only kids have formal dx but sibs and I feel we all are. It explains so much. I think on the whole it is a positive to claim it and live more authentically and demand better care/accommodations.
I think feeling like I “deserve” to ask for accommodations is the main reason I’m doing this, although I have no idea what will end up happening.
Brava, Esmé
❤️❤️❤️
Diagnosed at 38, three years ago - welcome! It's a fantastic club! And although I say that in a jokey way, I do mean it. I made that discovery by myself, with no one to guide or support me during that process, and it was a mindfuck. What has helped me the most is finding others - a few of them were right, there -- my friends -- who had no idea or were just discovering it about themselves or their children, and be for them so they wouldn't have to go through that shit alone. And then finding more (and collecting my friends and lining them up - just kidding). But really, community - and I actually discovered A BUNCH of diagnosis at the same time, so the disabled community in general - has helped a lot. So many painful experiences seemed to be unique to me, and finally discovering other people who understood - and understanding together that a lot of them were actually very unfair... It has made a world of difference.
So thanks for joining us, and for opening this conversation and this space. Yes, it is a big thing to absorb, and at our age, such a big shift in our sense of identity. But for me, it's been freeing. I wish you so many good things on that weird, beautiful journey.
A weird and beautiful journey is such an amazing way to describe it. Thank you.
I’ll also add that getting diagnosed with autism was the best day of my life and I really would appreciate folks saying it’s not “worth” it because accommodations etc.
there is so much more value in diagnosis than just an elusive piece of paper at the end.