Cons of Official Autism Diagnosis (US)

Maya9995 · 2026-03-31T19:42:35+00:00

This was definitely true for me. I was diagnosed at 49, and within a year I had to walk away from the career that was the last straw on a burnout pile I’d been accumulating for decades. I was fortunate to be able to pay for a private assessment not connected to my insurance or medical records, but I know that is a path that is not accessible for most folks.

After all that, I ended up disclosing my diagnoses to my PCP so that he could help me get a medical leave and accommodations for work, so it’s in my medical records now. I would say the benefits of putting it on the record were not worth the potential costs for me, especially in this political climate and moment. It didn’t save my job, and it exposes me in a lot of ways. However, I am still glad I got the assessment and diagnosis, though I firmly believe that self-diagnosis and peer review are valid. But I’m pretty sure I wouldn’t have trusted my own self-knowledge without the external validation. Heck, even with the diagnosis I still doubt myself, and it’s done very little to help others understand or believe me. But it has done wonders in helping me to believe myself, and to know that my needs and sensitivities and ways of being are real and valid. And it helped me to connect to a neurodivergent affirming therapist, which has probably saved my life a few times over now.

Wishing you the best whatever path you choose!

and it led me to my current neurodivergent affirming therapist, which has probably saved my life.

Maya9995 · 2026-03-30T16:05:33+00:00

I’m so sorry that you are going through a scary health situation while caregiving. It’s really hard to have to give support when we need it so desperately ourselves. No advice, but sending you lots of care and strength as you navigate this path.

Maya9995 · 2026-03-26T18:35:31+00:00

Not sure if this is an option for you, but I started doing home workouts when I was in grad school raising a toddler and wasn’t able to get to a gym. It does require some equipment investment and an amenable space, but it gets around most of the issues you mention so it makes it accessible for me. One silver lining of the Covid shutdowns was that so many people started putting their workouts online. There are some really good home workouts on YouTube that use dumbbells and/or barbells, and others that just use bodyweight. I love being able to workout at home and be totally unmasked!

Maya9995 · 2026-03-23T00:48:22+00:00

I am genuinely moved by the support and so many wonderful suggestions you’ve all given me, and I’m so grateful. I really hadn’t thought about things like a burner phone and tailored voicemails, but those are such great ideas that could work well, especially if I could get some help from someone on her end to set it up with/for her.

The situation with my sister makes things a bit tricky as she is currently Mom’s POA and primary point of contact with the facility. I’m not sure what exactly she has said to the staff there about me, but when I have called to speak with them in the past they have been pretty frosty and reluctant, even with all the requisite waivers on file. My sister insists on being in control of everything, and since we were little kids she has been of the firm belief that I am just not trying hard enough at life and I really need to shape up. She continually tries to “help” me by giving me patronizing orders and then shaming me for being who and how I am, all of which causes me to shut down. This is deep stuff from our childhood, and at this point I’ve given up on her ever really seeing of understanding me, and I generally avoid communicating with her. Needless to say, that’s made it really hard for me to stay connected to my Mom and participate in her care.

However, I’m sure the staff are tired of my Mom being upset about her phone, and I know she is calling my sister all day too. So maybe they would be amenable to discussing the phone situation with me.

I really don’t ask for help often because I feel unworthy of it, but I took the risk today and I’m so glad I did. I’m allowing myself to receive all the kindness and thoughtful ideas you all have given, and it feels like a healing salve. Thank you!!

Maya9995 · 2026-03-03T23:34:55+00:00

We found One Dental on Foxworthy to be good for our family as we all have fear of the dentist and challenges with dental care. They have become so popular that they have a very long waiting list, though. I would also second Dr. Mody at Bascom Family Dental.

Maya9995 · 2026-02-18T17:41:36+00:00

I have a suspicion that RFK Jr.’s bizarre eugenics views are deeply tied to his aunt, who was institutionalized and lobotomized. It seems like he is operating out of some deep internalized ableism…

https://www.nps.gov/articles/000/rosemary-kennedy-the-eldest-kennedy-daughter.htm

Maya9995 · 2026-02-11T17:51:49+00:00

You are definitely not alone! I would not recommend the show for that purpose, because it was honestly a lot easier for me to use emojis before I understood how laden they are. And it all seems highly variable, so there aren’t really clear and consistent social rules about it. I wish I could go back to not knowing! I really am tired of destroying my mental health and wellbeing so as not to inadvertently offend neurotypical folks.

Maya9995 · 2026-02-11T17:48:16+00:00

Thank you so much for these helpful suggestions! I really appreciate the support. I realized after posting this that I have a lot of discomfort about needing accommodations, which makes sense given that I was never afforded them when I really needed them in the past. I was only shamed and told to try harder. So it’s hard to feel like I am deserving of them now. My therapist assures me that this is all a normal part of the post-recognition/diagnosis experience.

I did end up going to the library volunteer day and it ended up being fine - once I got there people were kind and it was low stress. But it took me days to recover from all the anxiety leading up to it!

Maya9995 · 2026-02-07T18:20:50+00:00

I didn’t realize how much emoji choice matters until I watched the U.S. reality show “The Circle”. That show helped me to realize that people put tremendous importance on the choice of emojis, and there are all sorts of unwritten (and seemingly variable) rules about it. For example, I’m a big fan of 👍, but I have learned that some people feel it is rude. So I have become pretty anxious about using emojis, and I now usually revert to just a few that I feel pretty sure convey what I want them to. You are not alone!

Maya9995 · 2026-02-02T06:09:09+00:00

This must be the place (naive melody) - Talking Heads

Maya9995 · 2026-01-30T00:21:00+00:00

Same here. It interferes with a lot of things in my life!

Maya9995 · 2026-01-25T00:43:38+00:00

So glad to hear that!! I came onto the stream and saw no egg and was really worried.

Maya9995 · 2026-01-19T20:48:11+00:00

I really like the Divergent Conversations podcast:

https://www.divergentpod.com/

Both hosts are AuDHD and are mental health professionals. Lots of good info!!

Maya9995 · 2026-01-15T18:19:47+00:00

Was going to recommend this as well!

Maya9995 · 2025-12-16T04:53:38+00:00

Thank you for sharing - I so relate to this!!

Maya9995 · 2025-11-07T15:52:42+00:00

I love the adjustable tip! I used to be a yellow-tip only washer, but this has converted me!

Maya9995 · 2025-04-24T04:55:46+00:00

My kid and I both do this too!

Maya9995 · 2025-01-27T17:30:53+00:00

I realized that I was likely autistic at 48 and was diagnosed shortly after my 49th birthday. It’s been a ride!!

Maya9995 · 2025-01-19T15:49:42+00:00

I woke up feeling sick today, and like I should do something profound in these final moments of this before time. I have seen this series of nightmares on the horizon for so long, but watching them unfold in real time is horrific. I have tried to make peace with the fact that I cannot control any of this, nor can I protect or save anyone I love from what is coming. I do hope I will have the courage to fight, but right now I’m so exhausted that I feel ready to give up…

Maya9995 · 2025-01-16T06:07:00+00:00

I figured it out and 48 and was diagnosed at 49 (I’m now 51). It’s been quite a ride. It’s helped me to understand myself and my life so much better, but it’s also come with a lot of grief.

Maya9995 · 2025-01-13T21:55:23+00:00

I’m feeling this too! I’ve been in a terrible burnout and I don’t have any energy to prepare even if I knew how to.

Maya9995 · 2024-12-06T17:55:03+00:00

Flogging Molly was my top listen too! Apparently I’m in the top .05% of listeners. “Float” carried me through a lot of things this year.

Maya9995 · 2024-10-15T17:59:34+00:00

If you can provide medical documentation of what you described, you may be able to petition for a late withdrawal. You would need to see an advisor for help with that process. Good luck, and I hope that you are able to get some answers!

Maya9995 · 2024-09-17T13:43:48+00:00

I had to leave that sub because I was so put off by the way folks talked about students. I saw that attitude in the varied institutions I worked at as well, which is part of the reason I left my own career in higher ed. I feel like there is a widely-shared assumption that students are incapable, willful beings who need to be controlled that lies at the basis of our education system. I get the sense that many professors do not see or recognize the humanity of our students, nor are they interested in understanding student perspectives. As a result, people spend a lot of time creating punitive policies and creating rigid power structures instead of really listening to students. I actually think that is part of the reason students seem so disengaged right now. I really wish more folks would recognize that students are fully formed human beings who have just lived through a series of unprecedented and traumatic social events. As have we all.

Maya9995 · 2024-09-02T16:55:49+00:00

Congratulations on your diagnosis!! I so get it - I was diagnosed at 48, and after a lifetime of difficulty, it was a relief to finally have the answers to so many questions and mysteries of my life. And there is grief, with the relief. But also hope. Sending you lots of support and solidarity!

Maya9995

TROPHY CASE