Self-diagnosed AS, should I try to get an official diagnosis

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Stampfigang
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31 Mar 2017, 4:45 am

I'm pretty new to this forum and I'm still on may way to find out about AS (if you want to read more about me you can read my introduction thread: viewtopic.php?t=339191). The more I read about AS, especially about women with AS, the surer I get that I'm an Aspie too. Considering I'm 38 I'm unsure how to proceed now. I haven't been to a therapist in nearly 10 years, back then AS never was an item anyway. Means if I would want to get an official diagnosis I would have to start from scratch. I don't know if it's worth the effort and I'm also not sure what it would change anyway. Considering I'm having a steady job, friends, no trouble with my family and I'm able to live alone I take it I'm a mild case compared to what other people have to go through. It still bothers me that I perceive nearly all the other people as strange and I also feel like I need way more energy than the other people to not f**k my life up. This also gets kinda harder with age. I guess it would feel good to get an official confirmation and I think it would make it easier for me to tell my friends or at my work place (just in case I ever have to tell it at work anyway). What are your experiences with getting a diagnosis as an adult after finding out yourself? Did it help you, on a personal level or with your surrounding? And how did your surrounding react when you first told them about your self-diagnosis?


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leejosepho
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31 Mar 2017, 6:53 am

Stampfigang wrote:
...feel like I need way more energy than the other people...gets kinda harder with age. I guess it would feel good to get an official confirmation and I think it would make it easier for me to tell my friends or at my work place...

A professional diagnosis would not change any of our challenges in life or help others understand, and I doubt it would change the minds of skeptics who are unsure of my so-called "self-diagnosis". However, having a professional diagnosis *might* inspire some people around us to investigate further in an overall sense. Most important to me, however, is to let you know of my eventual "Aspie Burnout" following a half-century of "I need way more energy than the other people...gets kinda harder with age." Learn to pace yourself a bit so you can make it to the end of the course!


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ASPartOfMe
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31 Mar 2017, 9:45 am

A professional diagnosis might erase lingering doubts. It would be an insurance policy. While at this moment you are not overly impaired there is no predicting the future. You need a diagnoses to get disabilty benefits and supports and accommodations at work. While I am not familiar with the Autism diagnostic situation in Switzerland, the process of getting a diagnosis can be long and possibly expensive so it might be better to do it now when your situation is good then have to first start the process later on when maybe you are desperete and your financial situation poor. Self diagnosis can lead to confirmation bias.

Self diagnosis or self identification or just suspecting Aspergers is enough to identify your traits and find coping strategies from places like this. Some of the leading Autism experts believe a thorough self diagnosis is usually accurate. Like I said in the last paragraph getting a diagnosis can be frustrating. This is especially true for adult women because the diagnostic criteria was written for boys. This is just beginning to change. Even though many places have laws both prohibiting descrimination against autistics and mandating accomadations they are often ineffective. So there is a worry about your employer finding out.

As far as people doubting you, that is likely to happen professional diagnosis or self diagnosis because your traits are not visable and the general public and many clinicions have very stereotyped ideas about autism. The doubts from others will be greater if you self diagnose. You do not have to tell family and friends. As far disclosing to your employer you need to find out what the laws are in Switzerland.


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31 Mar 2017, 2:25 pm

Stampfigang wrote:
What are your experiences with getting a diagnosis as an adult after finding out yourself?


The actual process of being diagnosed? All a bit underwhelming. I was already so sure that, whilst it helped to have it confirmed in front of other people, it wasn't a shock to my mind. I didn't have to struggle for the diagnosis, either. I had a supportive husband to back me up by attending appointments with me, but I also avoided all roadblocks. My GP was fantastic and trusted my judgment, putting me straight forward as a case for review, and I was only waiting for a few months between my referral and diagnosis.

Stampfigang wrote:
Did it help you, on a personal level or with your surrounding?


I always describe it as my permission to stop fighting. It allowed me to accept myself and my 'weaknesses'. It was my chance to understand that I simply wasn't on a level playing field with other people and that a lifetime of fighting to be like them, and not succeeding, was for a reason. It allowed me to start accommodating my own needs and asking for help from others. I would never have 'used' autism without a formal diagnosis, but I now use it so that I don't need to deal with face-to-face or phone conversations and can do more online, by email or in letter form. I wear sunglasses and don't care if it's overcast and what others thinking. I carry a stress ball and use it if I'm feeling overwhelmed. I have a digital notepaper if I'm struggling to communicate verbally. All things I've allowed myself after diagnosis.

Career-wise, it also changed things. It's great that you feel your career is stable now, but do be cautious about changes. Employment in an office had not worked for me, so I set up my own business, and recently I burned out to the point where I had to pass my business on to someone else. As a result I did look into other employment, and my knowledge of autism meant that it was easier for me to evaluate my skills and weaknesses rather than making attempts at something I wouldn't be capable of long term. It meant that I closed a lot of doors for myself, but had I left them open I suspect I would only have burned out again.

Even with self-diagnosis, the experience is liberating. Knowing your motivations, abilities, skills and weaknesses, and how many of them are somewhat out of control. But I felt that I couldn't 'use that' beyond my own knowledge, until I was professionally diagnosed. Until then, it was just something I knew and didn't communicate with anyone else, which means that it was less useful.

Stampfigang wrote:
And how did your surrounding react when you first told them about your self-diagnosis?


I only told my husband, until I was formally diagnosed.

I am all for self-diagnosis and spent some time self-diagnosed, but I don't believe that it's right to claim that you're autistic until it's confirmed. That's not to say that I believe a formal diagnosis is necessary or that I don't believe people that are self-diagnosed, though. So, I was never in the position where multiple people knew that I was autistic before it was diagnosed professionally.

My husband tried to play it too cool at first. He accepted it but showed no interest. It was taking over my every waking thought, eating away at me, and to prove that he'd accept me just the same, he never spoke of it. He didn't realise how much it was affecting me, and I think he believed there was a chance that I wasn't autistic and he didn't want to get too wrapped up in it until we knew for sure. This continued right up until I was asking for a referral, when he told the GP "she might be, she might not".

Once I told my husband how much it was affecting me, whilst awaiting my diagnosis, he did his own research and spoke about it much more with me. At this point, once he'd actually looked into autism and I'd been able to speak openly about which aspects of my behaviours and experiences were demonstrating my autism, he announced one day "you are clearly autistic, no doubt about it", and ever since he's been my biggest advocate and support.



Stampfigang
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04 Apr 2017, 9:13 am

Thanks for all the valuable inputs. I'm still not sure how to proceed but I will at least find out about where to go in my area for a diagnosis. Just in case...


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Your neurodiverse (Aspie) score: 117 of 200
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pi woman
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12 Apr 2017, 12:49 pm

I suggest you take the official quiz first to validate your perceptions. It'll also be useful to whomever you go for a professional diagnosis.

Look up the "Autism Quotient" quiz by Simon Baron-Cohen.



AngryAngryAngry
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17 Apr 2017, 8:04 am

Mild AS male here.
Undiagnosed. I only just discovered it. Also 38.
Don't see the point in official, unless I can get some kind of financial assistance. But I'd prefer to progress with my own business & be independent.



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20 Jun 2017, 10:16 pm

I'm not quite sure how anyone did react, if anyone should have reacted or indeed needs to react.

It should just be accepted as being part of a social disorder and body dysmorphic condition whereby the traits all point to a specific gene from family members who've passed it down through the generations. I think it's often carried through the male donor, and that is generally how people react to famales who've got it, as if they've got male diagnostic traits instead of their own. Life is menatlly f****d up.