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Question about getting diagnosed later in life

Kavigant

Kavigant

Good Boy
V.I.P Member
I’m an older adult who recently learned what High Functioning Autism (or ASD1) is, and I’ve been completely blown away at suddenly having a “unified field theory” for just about all the weird things I’ve been at a loss to explain for more than fifty years. So I quickly made an appointment for evaluation.

Based on what I’ve seen and heard, I anticipate possibly having a harder time being accurately diagnosed because of my age:

1. No one who was present for any meaningful portion of my childhood is still alive for the health care provider/evaluator to interview. My only surviving family members no longer talk to me due to their (mis)perceiving me as too argumentative or weird.

2. The single largest expenditure of my energy over the past fifty years or so has been trying desperately to fit in with mainstream society (camouflaging/masking). I’ve gotten good enough at it that I present as a highly-capable neurotypical person (good eye contact, able to painfully and awkwardly fake small talk, etc.) until I invariably fail to meet the expectations of employers. (Usually due to being promoted into management positions for which I am horrifically ill-suited.)
According to my understanding of the diagnostic criteria (DSM-V here in the US), it is important that the diagnosing professional be able to confirm the presence of symptoms all the way back to childhood.

The best I can do is my wife of twenty years who is able and willing to corroborate the presence of these symptoms for the entire time she’s known me.

I’m writing to ask folks here:
1. whether you think I have any chance at all without parents or other family members to corroborate my claims, and
2. whether the evaluator is likely to interpret my deeply-ingrained masking behaviors as my being "successful" at life.

Thank you all.
 
Hi Fraxinus! and welcome to a new place I think you will feel at home.

My kaleidoscope clicked into place in March of this year. I am 66 and so relieved that my life finally makes sense.

I suppose the answer to your questions revolves around your Why?

I hope that you will have a reasonable diagnostician who has a lot of experience diagnosing adults, in which your own testimony and your wife's witness should be sufficient. Especially once your test results are there in black and white.

As to masking, altho many of us get very good at it, my therapist says that a competent analyst can always see thru the mask. ;)

Whatever your Why? I hope you find your answers
 
Thanks very much ra49! I'm glad that you finally have answers for yourself.

My only "why?" is because I have to know.

I'm always drawn to understand things and the explanation for my weirdness has always been the biggest mystery to me.
Why haven't I been able to find career success despite being so damned smart and very hard-working, very responsible, getting great reviews, etc.?
Why did I completely fall apart and break down in tears in front of my former supervisor when the nature of my job changed drastically during a time of high unpredictability?
Why, about a year ago, was I moved to beg my therapist, "What AM I?"
 
Hi there,

Although I understand that it might be easier for a practitioner to identify autistic traits in a kid - due to underdeveloped coping and masking skills - I do find it BS that they might claim to need to work back to childhood to diagnose. A good practitioner should be able to see through both. So although you keep eye contact it is going to be qualitatively different to NT doing so. You will likely have involuntary stims. I also found I couldn't resist a lot of other behaviours when prompted, like black/white thinking, catastrophising. Thinking of times when something happened and describing that helped, as you can't gloss over what you actually did (unless you want to outright lie, but I don't think that's what you mean).

So it's all about finding the right practitioner. Some of them will barely register that ASD exists unless diagnosed as a kid. Some will see a man in front of them and head straight to ADHD and the pill bottle as a solution. But there are ones with the skill to diagnose an adult who has patched over the challenges. All the best.
 
Thanks for your reply, MNAus.

I think that I'm going to need to focus on unmasking during any meetings with health care professionals. I am in the habit of spending so much time during conversations with anyone other than my wife) focusing on what I should say, how I should say it, what expression I should have on my face, when I should laugh, what socially- and professionally-appropriate jokes I can tell, etc. I'll need to try to stop all that, or at least to admit that I'm doing it when I catch myself.
 
Fraxinus said:
Thanks for your reply, MNAus.

I think that I'm going to need to focus on unmasking during any meetings with health care professionals. I am in the habit of spending so much time during conversations with anyone other than my wife) focusing on what I should say, how I should say it, what expression I should have on my face, when I should laugh, what socially- and professionally-appropriate jokes I can tell, etc. I'll need to try to stop all that, or at least to admit that I'm doing it when I catch myself.
Click to expand...
I would guess this is the case with anyone on the spectrum who has managed to progress in life. To your average NT it will pass with only a touch of uncanny valley, but well trained eye it should be fairly transparent. If you're able to self reflect and walk through what happened when you do this during an appointment it might be of help. But really, the mental load of doing all this should be pretty obvious to a good practitioner, regardless of how well you do it.
 
Welcome. I was diagnosed at 60 by a practice well versed in dealing with autism. by 70 PTSD from earlier social isolation was becoming difficult for me to avoid. For that I underwent Cognitive Processing Therapy which has helped me tremendously.

Like you, the weakest performance in my career came when asked to take on management responsibilities. My forté was in dealing with technical process and quality issues (Statistical process control and statistical design of experiments.) in a highly regulated environment. I worked well with engineering which seemed enriched in the ND. Surprisingly I worked well on projects overseas. I felt like an anthropoligist in my own society trying to understand people, so my observational habits and ability to defend my ideas let me be effective working within different cultures.
 
Thanks for your reply, Gerald.
What you shared makes perfect sense to me, especially how you say you felt like an anthropologist within your own society. I understand that feeling.

A long while back, the Onion ran a satirical article about a boy who had been invited to a party and proceded to check out books from the library about parties. I was/am that boy.
 
Fraxinus said:
A long while back, the Onion ran a satirical article about a boy who had been invited to a party and proceded to check out books from the library about parties. I was/am that boy.
Click to expand...
I think a lot of us here were/are that boy. I was skeptical about my test results and took extra tests at my expense before surrendering. Then I read everything I could about Asperger's and Autism to see what it was I was supposed to be.
 
Welcome!

Re: question 1
I'll link an response I've provided in another thread.
www.autismforums.com

ADOS-2? (Module 4)

I was in contact with my local autism center for diagnostic purposes, I ended up there through a grapevine of references. Now, I don't know what testing is available, but I thought all of it would be DSM(DSM-5?) based. This center offers ADOS-2 testing. I am scheduled for a consultation there...
www.autismforums.com www.autismforums.com

Re: question 2
That depends.
The lack of testing standards and wide variation in how many and which tests are administered also means there's a wide variety of diagnosis outcomes - some give a long detailed report, others may provide a diagnosis and not much else, and others may fall in between.
 
Fraxinus said:
1. whether you think I have any chance at all without parents or other family members to corroborate my claims, and
2. whether the evaluator is likely to interpret my deeply-ingrained masking behaviors as my being "successful" at life.
Click to expand...

1. Yes, you have a good chance if you're in a country with a half-decent healthcare service. The specialists who assess adult autism are used to this and can work around not having a full history.

2. No, the specialists are aware of masking and will understand.

I'll add, a lot of it seems to depend on how competent and thorough your doctors are. Mine were great but not everyone has that experience.
 
Fraxinus said:
Thanks very much ra49! I'm glad that you finally have answers for yourself.

My only "why?" is because I have to know.

I'm always drawn to understand things and the explanation for my weirdness has always been the biggest mystery to me.
Why haven't I been able to find career success despite being so damned smart and very hard-working, very responsible, getting great reviews, etc.?
Why did I completely fall apart and break down in tears in front of my former supervisor when the nature of my job changed drastically during a time of high unpredictability?
Why, about a year ago, was I moved to beg my therapist, "What AM I?"
Click to expand...
A few years back, at age 68, my own mystery unraveled. Your words speak my life well. Every hour of every day for an entire lifetime trying to understand why, looking for a solution. While our friends around here understand this battlefield better than I, I am concluding that you and I are under-understood. Living until late in life with no viable answer to the unavoidable question has as impact I’m convinced isn’t understood by those who grew up diagnosed or learned when it was early enough to allow for adjusting one’s self. For the remainder of this post, I will detail the solutions I’ve found.
 
Yea, upon learning what autism is and that it seemed to fit my life, I also had to know. I also wanted a diagnosis - almost desperately. But then, I realized, so what?? At 71 years years of age, what would a diagnosis do for me? Just a talking point to tell others? I couldn't see any benefit to my life at that point. But, like you, I had to know - for me.

I self-diagnosed in April 2019. The more I researched autism, the less I needed an "official" diagnosis. For example, if you fall down and feel a seething pain in you leg; you look and see that you leg is bent halfway between your knee and ankle; you don't need a professional diagnosis to know you have a broken leg. You know without any doubt that you have a broken leg. It wasn't long before I realized; I am "broken leg" level autistic. I know that without any doubt. So, I now consider myself to be officially self-diagnosed.

When it merits, I still tell people that I'm autistic. Typically medical professionals. None have ever asked for any documentation or "proof". None have ever asked who performed the diagnosis.

Everyone who knows me already knows I'm weird - a bit off, etc. Adding that I'm autistic generally does not improve anything. I've found that essentially no one even knows what autism is - even medical professionals. So, for the most part, it's a moot subject.

But, yea, like you, I had to know. It's just; I didn't need any professional to tell me so.
 
Fraxinus said:
Thanks for your reply, Gerald.
What you shared makes perfect sense to me, especially how you say you felt like an anthropologist within your own society. I understand that feeling.

A long while back, the Onion ran a satirical article about a boy who had been invited to a party and proceded to check out books from the library about parties. I was/am that boy.
Click to expand...
When I was around 25, not knowing I was autistic and faced with the realization that the map in my mind did not represent the real world and I needed to learn to be social, I read everything I could about verbal and non-verbal social communication.
 
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