Discouraged from getting a diagnosis?

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LittleGreenAlien
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13 Dec 2023, 4:17 pm

Has anyone in your life ever tried to get you not to pursue a diagnosis or help for your Autism (or any other disability or disorder)? I remember being suspicious that I may have autism when I was around 14 but I was told by my mother that I was just faking it/over-exaggerating although she knew about (and scolded me) for my autistic habits (not understanding social cues, not making eye contact, not being able to smile "right", avoiding other people because they made me nervous and very overstimulated).

Have you been in a similar situation?

(Also I wonder why people try and do this in the first place, not having a diagnosis doesn't make the problems go away, it just makes you feel like a failure for reasons you don't understand) :(


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DanielW
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13 Dec 2023, 4:22 pm

The process and the long wait times, as well as cost to get a diagnosis are enough to discourage most people, but I don't think anyone ever discouraged me personally.

Some people did point out that as an adult in the US it would be of little use to get a formal diagnosis unless I was going to need specific workplace/school accommodations that I couldn't get otherwise.



TikvaBall
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13 Dec 2023, 7:34 pm

I've had some people in my life who did not believe me. One roommate I used to have said, "You don't have Asperger's, you're just a lady who likes bears." Then I had a doctor who was able to do the diagnosis, but he never even did the assessment. He actually said, "Do you _want to be labeled autistic?" When I told my aunt about that crap, she came back with the line, "Do you want to be labeled stupid?" This was back in 2012, so maybe he's evolved since then, I hope.



CockneyRebel
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13 Dec 2023, 9:28 pm

I think that you should do what's right for you and don't listen to what your mum says.


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LittleGreenAlien
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13 Dec 2023, 10:44 pm

CockneyRebel wrote:
I think that you should do what's right for you and don't listen to what your mum says.


I did eventually end up getting diagnosed :D it was a big weight off my shoulders to finally have like an "answer" as to why I am the way I am


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autisticelders
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14 Dec 2023, 8:36 am

All my life I begged for counseling and therapy and was told "there's nothing wrong with you" "straighten up and fly right" , you are not trying, pull yourself together and other shaming and blaming things. Of course my parents did not want me to get counseling, they were afraid they would get blamed for "the way I am". It makes sense now I know about my diagnosis.

When I finally got diagnosis at age 68, it sure explained a lot, yes it was mostly a huge relief.


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14 Dec 2023, 11:39 am

If someone was muddling through life reasonably well and did not need treatment or formal accommodations then I'd probably discourage them from getting a formal assessment until they were at least 40 years old.

I would be concerned that the diagnosis itself could impair the individual. It might close opportunities and it could definitely attract negative attention from others.

Though an unofficial diagnosis (for instance from an online test), used correctly, could be useful.

After the individual is old enough and accomplished enough the diagnosis would seem less likely to cause negative repercussions.


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rse92
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14 Dec 2023, 1:34 pm

autisticelders wrote:
All my life I begged for counseling and therapy and was told "there's nothing wrong with you" "straighten up and fly right" , you are not trying, pull yourself together and other shaming and blaming things. Of course my parents did not want me to get counseling, they were afraid they would get blamed for "the way I am". It makes sense now I know about my diagnosis.

When I finally got diagnosis at age 68, it sure explained a lot, yes it was mostly a huge relief.


Who were begging at age 68? Didn’t at some point you achieve some independence in your life that you could go out and get it yourself? If you tried to get counseling, therapy or a diagnosis at 58 could your parents have stopped you?



autisticelders
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15 Dec 2023, 1:50 pm

I begged from my childhood, I did get counseling at age 30 (my spouse at that time did not want counseling either. but I went on my own and learned that my problems were maladjustment from trauma from both my childhood and living with an abusive spouse (chose the same pattern I was familiar there) Changed the pattern once I knew I could choose other behavior besides appeasement and that it was healthy to do so. But I had to be taught. Counseling saved my life and my sanity long before I ever learned about my autism.


I did not get diagnosis until I was age 68, but the counseling and learning healthy behaviors and communication saved my life and sanity.

When I was 30, almost nobody got diagnosis of autism unless it was profound.

I was grown and retired from work before I ever recognized my struggles as possibly being because of autism.

Shaming and blaming for years kept me in a cycle of apologizing for not measuring up to anybody's expectations . It was a relief when I finally found somebody who knew about adult autism and I got that diagnosis. Almost all the years of struggles were finally made understandable. It was a huge relief!


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15 Dec 2023, 2:21 pm

My GP seemed to be mildly discouraging me from it, though she might have just been warning me of its limitations. It was legitimate for her to want to know why I thought I had ASD, though I felt somewhat intimidated at the time because I'd got wind of the idea that the NHS wanted to save money by resistance to requests for a referral, and because my previous GP in the same place had nearly always tried to talk me out of getting anything done about any ailment I presented, so I'd come to see the place as more of a hypochondriac-labelling centre than a doctor's surgery. Anyway, she complied with my request without a lot of fuss.



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17 Dec 2023, 3:00 pm

Most people said there didn't seem to be a point getting one, if I had gotten along this long without one and already have a job and stuff that I succeed at.

At the time I agreed with them, but I did end up getting a diagnosis and discovering more about my needs along the way. The diagnosis was a net positive, even if I'm still paying off that loan.


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17 Dec 2023, 5:06 pm

^
Well I think the more you know about yourself, the better. But my main reason for the DX was workplace-related autism issues, which was getting rather urgent. I didn't mention that to my GP, as my previous one had turned rather unco-operative about the slightest whiff of using him to get out of anything work-related, so I felt there was a danger that there was a government-driven policy to stop doctors from helping employees to fight back against their bosses.

In the end I went private because the NHS was being too slow for comfort, but I don't think I'd have paid much just for the self-knowledge. Certainly wouldn't have got into debt for it. I think it's enough to look at the traits and figure out which you have, and that costs nothing but time.



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17 Dec 2023, 5:13 pm

My parents were opposed to me pursuing a diagnosis until I gave them their portion of the evaluation.

Upon reading through and answering that section they swung hard into accepting and believing me.

Also:


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Hokulea
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12 Jan 2024, 10:06 pm

Apparently my school suspected I was autistic, but was worried a diagnosis might hurt my career prospects, particularly if I happened to want to go into something like the military. Things haven't gone well for me personally career wise regardless.



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15 Jan 2024, 11:44 pm

I was discouraged mainly by people thinking I was not autistic but they also wonder why would you want a diagnosis if there isn’t any treatment/cure? I never understood this as before my diagnosis I was constantly confused by why my brain worked the way it did and felt shame for the difficulties I had. Before my diagnosis was confirmed but I suspected it, I coujd t have the relief of knowing for sure and still worried that I just was failing. Then I found out and something clicked and it was a huge emotional relief.


Family definitely needed time to accept it and thought me and my mum were just making a big deal out of nothing and I was just rude. My therapist thought I was psychologising things.



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16 Jan 2024, 12:21 pm

lvpin wrote:
but they also wonder why would you want a diagnosis if there isn’t any treatment/cure?.

Plenty of autistics feel this way also and that is their right. Speaking of rude others telling you that you should not feel that way is rude.


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