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AnonymousAnonymous
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19 Oct 2021, 1:28 pm

Congratulations!

Do take as long as you want to accept your diagnosis as part of your human essence.


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skibum
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20 Oct 2021, 3:39 pm

:heart:


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Jon81
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23 Oct 2021, 6:05 pm

I see two of you in this thread diagnosed with ASD level 2. How come you've gone under the radar for such a long time? I mean, both my boys are ASD level 2 and there is absolutely NO WAY they'd be able to mask or anything to keep those people who would need to deal with them from not understanding something is up.


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AngelL
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23 Oct 2021, 7:53 pm

Jon81 wrote:
I see two of you in this thread diagnosed with ASD level 2. How come you've gone under the radar for such a long time? I mean, both my boys are ASD level 2 and there is absolutely NO WAY they'd be able to mask or anything to keep those people who would need to deal with them from not understanding something is up.


I get your confusion. First of all, about the only thing I recall about my pediatrician is that he always used to drop hot ashes on my bare skin from the cigarette that was always hanging out of his mouth while he examined me. It was a different world. The fact that I didn't speak until I was four years old wasn't missed - it was just explained away by the medical community at the time as, "He's just lazy...and a little stupid." The fact that the only non-A I ever received in school was in penmanship didn't get them to reevaluate that 'a little stupid' bit.

So, my differentness wasn't missed, it was simply blamed on other things. In fact, my father doesn't know that I have been diagnosed (and he's not going to), but it the last thirty days he's told me that 'there's something wrong with your thinking', 'you don't think like normal people', and 'the way you think is a choice'. He's been the most supportive family member in my life - by a LOT. Yet, if I shared the diagnosis with him, our relationship would end. He started out in denial, and still is.

I understand your incredulousness that someone diagnosed level 2 could mask well enough to avoid detection for as long as I did (56 years), but very literally...I know the word 'literally' doesn't always mean it these days but I assure you I mean it that way - very literally, I'd have been dead. Self preservation is a powerful motivator. Yeah, I masked well enough to avoid detection, but it couldn't be considered 'successful'.

By age 13, I had been in three treatment centers for drug addiction, two medical detoxes and a halfway house.
By age 16, I was on the maximum amount of blood pressure pills allowed by law.
By age 20, I had been diagnosed with an eating disorder.
By age 30, I'd been diagnosed with depression, panic disorder, copd, kidney disease stage 3a, and liver disease.
By age 40, I had developed an untreatable, incurable, progressive and ultimately fatal auto-immune disease.
By age 50, I had survived six heart attacks.

The body weeps the tears the eyes refuse to shed. I'm grateful your two boys aren't able to mask well enough to avoid detection - it means that they're loved and their lives don't depend on being able to.



SharonB
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24 Oct 2021, 9:19 am

^^ Kudos for getting through it!! Phew!! Are you glad? (in my 40s I was able to say for myself that I was)

Lumping on. In my late 40s, I was diagnosed mild to moderate (1 to 2) and outwardly appear as 1 (mostly... I have moments). The 2 didn't surprise me after I read through my old letters and evaluated my lifestyle for my evaluation. My mom likely has ASD and although she inadvertently emotional abused me, she also accommodated me in many ways. My dad was my emotional support but he was gone a lot and the best he did was tell me kindly "everyone feels that way" (which shut me down b/c I didn't know how to articulate the degree of my experience). As a young adult I went from friend to friend and boyfriend to boyfriend (and counselor to counselor) for support, e.g. buying stamps, grocery shopping. I also was the academic high achiever (until I started failing later in college). I had close calls in my life and my favorite "quirky" cousin didn't make it through her 20s. :( Now I support my husband financially and he supports me in most every other way, although it's a bit much for one person so I continue to spread my needs out between counselors and friends as much as I can and white-knuckle alone through as much as I can. I have never lived alone which is funny to consider.

My niece is ASD 1 (at least in outward appearance) and I am a bit envious: she is a star student, star athlete. I am also worried: will she really be able to care for herself? I'm told she does her own laundry w/o oversight, so maybe? Her mother (my sister) is a lot like my mom was (invalidating yet accommodating), so time will tell. My BFF appears to be a 1, but she made her life so very small, she is able to meet its small demands. She had two relatively stable ASD parents so her home-life was super low pressure and she went to a highly structured school (and lived at home a long time). I wouldn't be surprised that the 2 would show up for her if she faced more typical needs. I'm envious that her self esteem is better than mine and she's envious that my resiliency is better than hers. Pros and Cons.

AngelL, how's your health now? A sort of stability or frequent crisis? I hope you are suffering less (or not at all) from some of those. In my ASD support groups most folks are through the worst of the self-harm (if they make it through) by their 40s, not all. :heart:



AngelL
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24 Oct 2021, 11:48 am

Sharon, I deleted everything above your question - not because I wasn't interested in it; quite the opposite, and I'd like to thank you for sharing so much of yourself. I just wanted to isolate your question...

SharonB wrote:
AngelL, how's your health now? A sort of stability or frequent crisis? I hope you are suffering less (or not at all) from some of those. In my ASD support groups most folks are through the worst of the self-harm (if they make it through) by their 40s, not all. :heart:


I hope that my answer doesn't step out of the forums guidelines or offend anyone but here goes... My health is better than it has ever been, thank you. Last November, actually - November 7th 2020 at 6:34 p.m., while sitting on my couch eating raspberries and yogurt, I had a profound spiritual experience. My life for the last several years prior to that moment, had pretty much consisted of being in bed on supplemental oxygen 18-19 hours a day. And then, it wasn't.

I woke up the next morning after eight hours sleep, opened my eyes, jumped out of bed and found myself looking forward to the day. I hadn't ever remembered feeling that way before. It was not just that the depression had lifted; I felt happier than I ever had before. I had been on three different meds for depression and had been for many years; within a month, my doctors had taken me off all of them. On Nov. 17th, I attended my 9:15 am appointment with the neurologist who had been managing my untreatable, progressive and ultimately fatal auto-immune for the last nine years. My 15-minute appointment lasted until 5:30 p.m. that day - thirty minutes after the office had closed. She couldn't find it. The only thing she did find was that my blood pressure was much, much too low. She contacted my primary care physician.

He cut my dose in half immediately and asked me to monitor it daily for the next two weeks, go in to the hospital for a complete blood work-up, and come see him in two weeks. It took another month of weaning me off my blood pressure meds from 250 mg twice a day which kept me at around 140/90 to none for the first time in my adult life with a blood pressure now of about 110/72. My cholesterol was within normal range for the first time in my life. My chronic kidney disease state 3a had disappeared and there is no evidence of it. My blood oxygen level had been 94% for at least the last ten years - since November it has only ever been 99% or 100% and I have it tested at the doctors once a month.

I can't describe many of the changes that I've gone through internally without getting into content that might be unwelcome by some, but I can say that I began to experiencing things that felt eerily familiar or nostalgic without actually being able to recall the memories that made them so. Today, I have a better understanding of what happened. The masks that I hid behind began to slip. Life began eliciting thoughts and emotional reactions that I hadn't thought or felt for a half century. That which I had buried had found their way to the surface. Anxiety that I had denied, hadn't disappeared - unexpressed emotionally it had simply manifested itself somatically. At 56 years old, I was diagnosed with a panic disorder after a lifetime of presenting as the most unflappable person you'd ever met. That is one of a number of recycled challenges that I'm facing at the moment - challenges that I didn't know how to solve as a young child and still don't. It was the complete lack of understanding of how to navigate the world as I was, that caused me to create the masks I've worn my whole life in the first place. So all the fears, anxiety, uncertainty, etc., that I never dealt with - are back on my plate. And, I am so very grateful that they are.

I'm not five years old any longer. I am surrounded by a team of professionals who truly care about me, support me - and dare I say it...love me. I have never been more prepared or willing to face these challenges than I am right now; and for the first time in my life, I am not facing them alone. I've said all this to offer context to your question, "AngelL, how's your health now? A sort of stability or frequent crisis?" I described this in a letter to my therapist a few months ago, and more succinctly than I'll be able to do if I try to tackle it again, so let me offer that excerpt as a way of answering:

The past few weeks have been spiritually strenuous and emotionally exhausting. This is as it should be however, and is neither something to ‘fix’, nor is it something to avoid. Life is the university; spirituality is my major – and it’s final’s week…or decade. Its supposed to be chaotic. As I speak to the chaos, the uncertainty, and the challenges, know that they are welcome and temporary guests. In some ways, it might seem that I’m doing worse, although it would be more accurate to say that I am often presenting worse. There seems to be three reasons for this.

First, I am responding to life more authentically. Throughout my life, my genuine reactions have been covered by various masks, and I am doing that less often. Second, I have begun addressing things that I have spent a lifetime denying or ignoring. The things we ignore or deny are the things that frighten us, so I am facing an enormous amount of fear. Lastly, I am addressing those things that I haven’t avoided in the past, but I am responding to them differently in many cases. Even those instances where I am addressing the situation the same, I am stopping and questioning the assumptions that have caused me to react in unconscious, habitual ways.

Sharon, I am glad you asked. I hope that my answer was welcome.



Double Retired
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24 Oct 2021, 4:03 pm

AngelL, WOW! If I'm understanding this, your medical situation improved greatly--that is WONDERFUL! I know there are still issues but it sounds like great progress.


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EdCase
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24 Oct 2021, 10:03 pm

Jon81 wrote:
I see two of you in this thread diagnosed with ASD level 2. How come you've gone under the radar for such a long time? I mean, both my boys are ASD level 2 and there is absolutely NO WAY they'd be able to mask or anything to keep those people who would need to deal with them from not understanding something is up.


Essentially, I've been very lucky, I met my wife when quite young and she helps to compensate a lot. I had a period in where I couldn't get daily support from my parents or future wife, and amongst other things, I ended up suicidal, taking drugs and getting dangerously low in weight because I didn't feed myself properly. I have a life story and am unlikely to ever write that in a post. Without the support I've had I'd probably be dead.

The whole spectrum thing is valid. My mix is obviously different to your sons.


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AngelL
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24 Oct 2021, 10:26 pm

Double Retired wrote:
AngelL, WOW! If I'm understanding this, your medical situation improved greatly--that is WONDERFUL! I know there are still issues but it sounds like great progress.


Indeed. And yes, you understood correctly. Thanks for your joy in hearing it. :)



SharonB
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25 Oct 2021, 9:47 am

AngelL wrote:
Sharon, I deleted everything above your question - not because I wasn't interested in it; quite the opposite, and I'd like to thank you for sharing so much of yourself. I just wanted to isolate your question...

I do that also in my responses.

AngelL wrote:
My health is better than it has ever been, thank you. Last November, actually - November 7th 2020 at 6:34 p.m., while sitting on my couch eating raspberries and yogurt, I had a profound spiritual experience. My life for the last several years prior to that moment, had pretty much consisted of being in bed on supplemental oxygen 18-19 hours a day. And then, it wasn't.


That is life-affirming. Express and release. My mom and my sister avoid their feelings. My mom in particular (also ASD) repressed her big feelings (and memories) to survive an unfortunate childhood. This manifested in her 30s as a life in bed in a dark room. Just now in her 70s she's starting to let herself feel. She's surprised to find herself crying a lot. I'm not surprised.

Wishing you well as you navigate your new world.