Firstly, CONGRATULATIONS! Woohoo, an AuDHD double whammy! 🥳
Secondly, “confirmation” is a great word! I was toying with “identification” and “self-diagnosis” etc., but I’ve been so depressed today that I just needed to hit publish without too much thinking and word wrangling. I appreciate that though, and definitely agree with your terminology 😊
Thank you for writing this, Sam. It all feels like a lot, because it is a lot.
I'm just so tired! Telling people honestly about things that I NEED in order to stay more regulated more often, allowing people to see the real me, and trying to be brave enough to finally start living the way I need to and want to, these things are bringing rejection from places I least expected it, but also acceptance from places I wasn't expecting.
This is delightful and encouraging. I loved "intergenerational hormonal hell"! There is a company in the US called L Bee Health that has streamlined the diagnostic process. They do offer international assessments, since everything is virtual. They also have a lot of support groups. Of course. there is paperwork and I added some of my own thoughts, which I added to several times!! One thing I really liked was the psychologist shared her qualifications and asked if I had any questions. I believe all providers should do this on the first visit. (TIP: In the US all states have a medical board where you can review your psychiatrist's education and see if they have any complaints/lawsuits.) I do relate to the enormous task of documenting your medical history. I got so frustrated that I put all this information in a spreadsheet. Some providers have allowed me to submit this instead of filling out their paperwork.
I also appreciate that you acknowledge the need for deep rest as your process your diagnosis. Nick Dean talks about his inner saboteur. I am not currently working and my inner saboteur is always reminding me, Shouldn't you be working or at least looking for some kind of work???? It is not fun to continue to dip into my savings, but pressuring myself to find work is not productive either. So, I will be careful with my money and continue to process!
The lack of accountability in the medical system is deplorable to say the least! I have said it before and I am going to say it again, if this many men (no offense intended) went undiagnosed we would have lawyers on TV encouraging us to claim some kind of settlement.
My Bachelor's degree is in Biology and I can't fathom why the medical community bought that a condition which is not linked to the "X" chromosome occurred only in males. I also think the DSM Manual should be destroyed and completely revamped. I will step down from my soapbox.
Hi, a spreadsheet sounds great! When I was at a hospital appointment lately they offered a "health passport" you could fill in and present to doctors at different times. The goal seemed to be that you wouldn't have to retell them basic info over and over. But no way was there enough space - I would need to add an appendix!
It is so hard to shake off societal expectations. I have been "at home" since the kids were born. I work harder now than ever, but unless it's financially remunerated, it doesn't seem to count to anyone else.
In Aotearoa NZ we are unable to sue anyone for public accidents, injuries or mistakes with medical procedures. It is really different here, as I am used to the endless small claims courts TV ads in the UK.
As a Psychology graduate, I also agree that the DSM is way off our reality. So many psychologists don't recognise autism, and people suffer due to late and missed diagnoses.
Yes, there is never enough space on those stupid forms!! I am actually in the USA and we can sue for medical practice, but many states have tort reform which severely limits the amount you can sue for. I want the medical community to take accountability for the enormity of this oversight. There are autistic people who have wrongly been institutionalized. I realize this is not likely to happen and I should probably focus my energy on other issues.
I am glad you have been able to stay home with your children, this will pay "dividends" for the remainder of their lives. This is what I wanted to do, but apparently life had other plans.
Hi Barbara, it’s so exhausting having to reframe everything from our past in light of a new diagnosis. But I think it can definitely flip the script for the positive going forward. Yes though, so much processing and that’s exhausting mental labour 💕
Thanks so much for sharing this Sam! I discovered my auDHD recently—in my mid thirties—and I relate deeply to what you wrote. Among other life turmolt, the transition/reframing/unpacking/unlearning process has been so deeply draining, I've been on a knife edge of exhaustion for a good few years now, trying to claw my way out of the resulting burnout.
I have been forced (through a complete collapse of abilities and coping mechanisms) to choose *deep rest* —which has meant my finances have reduced to absolute bare minimum, which is a massive challenge/burden in and of itself... but it became obvious pretty quickly that the only way for me to heal, and build myself a sustainable, joyful life was to remove demands and expectations as much as possible, and prioritise *rest*. It's been a challenge to ward off internalised shame when people have asked over the past few years what I've been up to and how I am, because the answers have been "nothing" and "drowning". But in that time, inch by tiny inch, I have begun to restructure my lifestyle and my own expectations, and I am *finally* starting to feel stronger, brighter, and more hopeful for the future.
It has helped me immensely throughout these years to know that I'm not alone, and that much of my experience is being shared by other late diagnosed autistic women around the world 💗 thank you for taking the time to capture the experience in writing and share it with us 🙏 I'm very happy we can fund community in each other x
Hi Helen, sorry to hear you’ve had it so tough too! It’s all so much to deal with, but I’m so glad you’re able to process it all now through a self-regulating lens rather than a self-deprecating lens. Sometimes there is such a fine line between those two perspectives. People who haven’t lived it don’t understand it, but that’s on them not you 😭 💕
Newly diagnosed a few weeks ago and very old 50s, I think I’m burying it, no I know I’m burying it, refusing to face it. It feels so anticlimactic and also so huge all at once and I don’t know if I have the strength at the moment to go through that I need to go through, that which is waiting for me. Hey ho.
Huge congratulations, Tam! You don’t have to deal with processing it all just yet. It takes a lot of mental energy retro-fitting our lives to date around an autism lens. It can take years, and there’s no need to rush it :)
Thank you, Sam; that was lovely and timely, as I just got my AuDHD ̶d̶i̶a̶g̶n̶o̶s̶i̶s̶ confirmation on Tuesday! :)
Firstly, CONGRATULATIONS! Woohoo, an AuDHD double whammy! 🥳
Secondly, “confirmation” is a great word! I was toying with “identification” and “self-diagnosis” etc., but I’ve been so depressed today that I just needed to hit publish without too much thinking and word wrangling. I appreciate that though, and definitely agree with your terminology 😊
Thirdly: thanks for sharing this, Lee! 💕
Thank you for writing this, Sam. It all feels like a lot, because it is a lot.
I'm just so tired! Telling people honestly about things that I NEED in order to stay more regulated more often, allowing people to see the real me, and trying to be brave enough to finally start living the way I need to and want to, these things are bringing rejection from places I least expected it, but also acceptance from places I wasn't expecting.
Thank you for sharing your perspective.
That’s so beautifully put, Emma! I’m exhausted too. I wish we could all have more opportunity to rest and regulate 😭
This is delightful and encouraging. I loved "intergenerational hormonal hell"! There is a company in the US called L Bee Health that has streamlined the diagnostic process. They do offer international assessments, since everything is virtual. They also have a lot of support groups. Of course. there is paperwork and I added some of my own thoughts, which I added to several times!! One thing I really liked was the psychologist shared her qualifications and asked if I had any questions. I believe all providers should do this on the first visit. (TIP: In the US all states have a medical board where you can review your psychiatrist's education and see if they have any complaints/lawsuits.) I do relate to the enormous task of documenting your medical history. I got so frustrated that I put all this information in a spreadsheet. Some providers have allowed me to submit this instead of filling out their paperwork.
I also appreciate that you acknowledge the need for deep rest as your process your diagnosis. Nick Dean talks about his inner saboteur. I am not currently working and my inner saboteur is always reminding me, Shouldn't you be working or at least looking for some kind of work???? It is not fun to continue to dip into my savings, but pressuring myself to find work is not productive either. So, I will be careful with my money and continue to process!
The lack of accountability in the medical system is deplorable to say the least! I have said it before and I am going to say it again, if this many men (no offense intended) went undiagnosed we would have lawyers on TV encouraging us to claim some kind of settlement.
My Bachelor's degree is in Biology and I can't fathom why the medical community bought that a condition which is not linked to the "X" chromosome occurred only in males. I also think the DSM Manual should be destroyed and completely revamped. I will step down from my soapbox.
Hi, a spreadsheet sounds great! When I was at a hospital appointment lately they offered a "health passport" you could fill in and present to doctors at different times. The goal seemed to be that you wouldn't have to retell them basic info over and over. But no way was there enough space - I would need to add an appendix!
It is so hard to shake off societal expectations. I have been "at home" since the kids were born. I work harder now than ever, but unless it's financially remunerated, it doesn't seem to count to anyone else.
In Aotearoa NZ we are unable to sue anyone for public accidents, injuries or mistakes with medical procedures. It is really different here, as I am used to the endless small claims courts TV ads in the UK.
As a Psychology graduate, I also agree that the DSM is way off our reality. So many psychologists don't recognise autism, and people suffer due to late and missed diagnoses.
Yes, there is never enough space on those stupid forms!! I am actually in the USA and we can sue for medical practice, but many states have tort reform which severely limits the amount you can sue for. I want the medical community to take accountability for the enormity of this oversight. There are autistic people who have wrongly been institutionalized. I realize this is not likely to happen and I should probably focus my energy on other issues.
I am glad you have been able to stay home with your children, this will pay "dividends" for the remainder of their lives. This is what I wanted to do, but apparently life had other plans.
I enjoyed this. I was diagnosed 2 years ago. It gave me insight into things that had stymied me for much of my life. A lot to process but worth it.
Hi Barbara, it’s so exhausting having to reframe everything from our past in light of a new diagnosis. But I think it can definitely flip the script for the positive going forward. Yes though, so much processing and that’s exhausting mental labour 💕
Thanks so much for sharing this Sam! I discovered my auDHD recently—in my mid thirties—and I relate deeply to what you wrote. Among other life turmolt, the transition/reframing/unpacking/unlearning process has been so deeply draining, I've been on a knife edge of exhaustion for a good few years now, trying to claw my way out of the resulting burnout.
I have been forced (through a complete collapse of abilities and coping mechanisms) to choose *deep rest* —which has meant my finances have reduced to absolute bare minimum, which is a massive challenge/burden in and of itself... but it became obvious pretty quickly that the only way for me to heal, and build myself a sustainable, joyful life was to remove demands and expectations as much as possible, and prioritise *rest*. It's been a challenge to ward off internalised shame when people have asked over the past few years what I've been up to and how I am, because the answers have been "nothing" and "drowning". But in that time, inch by tiny inch, I have begun to restructure my lifestyle and my own expectations, and I am *finally* starting to feel stronger, brighter, and more hopeful for the future.
It has helped me immensely throughout these years to know that I'm not alone, and that much of my experience is being shared by other late diagnosed autistic women around the world 💗 thank you for taking the time to capture the experience in writing and share it with us 🙏 I'm very happy we can fund community in each other x
Hi Helen, sorry to hear you’ve had it so tough too! It’s all so much to deal with, but I’m so glad you’re able to process it all now through a self-regulating lens rather than a self-deprecating lens. Sometimes there is such a fine line between those two perspectives. People who haven’t lived it don’t understand it, but that’s on them not you 😭 💕
Newly diagnosed a few weeks ago and very old 50s, I think I’m burying it, no I know I’m burying it, refusing to face it. It feels so anticlimactic and also so huge all at once and I don’t know if I have the strength at the moment to go through that I need to go through, that which is waiting for me. Hey ho.
Huge congratulations, Tam! You don’t have to deal with processing it all just yet. It takes a lot of mental energy retro-fitting our lives to date around an autism lens. It can take years, and there’s no need to rush it :)
Thank you. ☺️ I have a therapy session about it in October so we shall see what that entails. I have a lot of years to retro fit.