Do you tell people you have ASD?
btbnnyr
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Joined: 18 May 2011
Gender: Female
Posts: 7,359
Location: Lost Angleles Carmen Santiago
No, I don't tell them directly, but I let them infer it, or they can consult the gossip mill, because some people know, so people who want to know have ways of confirming their suspicions, or they can even ask me directly, and I will tell them, but no one has done that so far.
It was so funny this past weekend when I presented a poster at a neuro conference, and it was about some ASD studies, and one of the pilot results were ackshuly data from myself, and I talked about the data from outside perspective while behaving the way that the data showed the whole four hours to each person I talked to, and someone even looked at that data and commented that they thought they behaved that way too, then some other people told me that I seemed to know a lot about ASD, and I laughed.
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When I first found out, I had the impulse to tell a lot of people, but I read something about "disclosure" that made me think twice about that.
I noticed that someone who was close to a person I had told began to treat me in a different way. I was then glad that I had limited the number of people who I had told.
What I have settled on now is not to tell people, but to tell people about symptoms on a need-to-know basis. I think I heard Tony Attwood talking about this and his advice made sense--if the situation is that I am with a team at work and they ask me how I interpret some subtle political thing that's going on, I just say, "I'm not the sort of person who is good at that kind of political thing--I seem to gravitate toward certain kinds of detail and miss other things." Or I might say, "I am not always the best person at reading between the lines. If there is an issue in this project that needs to be addressed, please tell me directly, I will be grateful, not offended."
This seems fine. People who work with me regularly already have a pretty good idea--several of them strongly suspected my diagnosis before I had a clue about it.
mr_bigmouth_502
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Joined: 12 Dec 2013
Age: 31
Gender: Non-binary
Posts: 7,028
Location: Alberta, Canada
I noticed that someone who was close to a person I had told began to treat me in a different way. I was then glad that I had limited the number of people who I had told.
What I have settled on now is not to tell people, but to tell people about symptoms on a need-to-know basis. I think I heard Tony Attwood talking about this and his advice made sense--if the situation is that I am with a team at work and they ask me how I interpret some subtle political thing that's going on, I just say, "I'm not the sort of person who is good at that kind of political thing--I seem to gravitate toward certain kinds of detail and miss other things." Or I might say, "I am not always the best person at reading between the lines. If there is an issue in this project that needs to be addressed, please tell me directly, I will be grateful, not offended."
This seems fine. People who work with me regularly already have a pretty good idea--several of them strongly suspected my diagnosis before I had a clue about it.
I find that if I merely tell people about my symptoms instead of telling them the "whole" story, they often don't take me seriously.
I did initially, but not anymore.
So, I was diagnosed last year. Other than my wife (who was with me when the Psychologist provided the diagnosis), I have told my teenage daughters, my parents, my siblings, an uncle (who is a mental health professional), my closest friend (who I have known since age 5) and two former work colleagues.
Several said, ?I know someone who has Aspergers and you are nothing like them?.
Several listened and then changed the subject, never to ask me about it again.
The uncle, who is a mental health professional, thought I was misdiagnosed. I believe he thinks I simply suffer from depression, anxiety and perhaps one or more personality disorders (say, Schizoid and Obsessive Compulsive Personality Disorder). He urged me to undergo therapy and get another opinion.
Ultimately, no one really cared about the diagnosis. Which, after thinking about it, is not much of a surprise. This stuff just isn?t that important (at least to them), especially at my age. To them, the diagnosis does not define who I am. I am simply ?Rocket?.
I have done this as well. As an example, I am extremely detailed oriented. I work from the bottoms-up. Only once I have put the details together can I form the big picture. What I have found, by doing so, is that I understand both the big picture and details better than anyone else. However, the process is 100% details first. Which means it oftentimes takes me a longer to complete certain assignments. So, I have had to explain to my boss the way I feel comfortable doing my work assignments. He has been quite accommodating.
As a note, this insight into my thinking style was one of the key ?Ahas? of the diagnosis procedure (there were others, of course). Prior to my diagnosis, I didn?t realize I was so detailed oriented. I thought my thinking pattern was quite normal. I wouldn?t have believed it, had I not seen the results from the neuropsychological testing.
I don't know what other people think, but I have only told one person in real life (a teacher), because
1. I don't have an official diagnosis. I took the RAADS twice, one year apart, and got the same score. ***Edit*** I was wrong about getting the same score, I just found my printed out RAADS from last year, and it was 156, so I've actually gone down 10 points. I don't know what that means, except perhaps I was having a better day this time around, or maybe all the work I've been putting in to understanding myself is paying off.
If I had the financial means, I would get an official diagnosis, but official or not, it doesn't change who I am. I think it would be helpful in the quest to further understand myself, and would certainly be validating, but it isn't necessary for my happiness.
2. I have had several previous diagnoses, so they would probably just think I'm a hypochondriac.
3. I don't want to them to think I'm using a diagnosis as a crutch, or as an excuse for odd behavior.
4. It isn't any of their business.
5. I'm actually very relieved to find that I actually fit somewhere, and I don't see it as a disability, and definitely don't want to be an NT, although it would be nice not to be so socially awkward sometimes. I'm glad that I know now why I have so many sensory issues. I wish I would have known as a teenager. THAT was hell, and I don't wish an undiagnosed Aspergerian teenagehood on anybody.
6. I like being interested in the things I am interested in, and I can't imagine how boring life would be without having such a strong passion for learning things.
RAADS
Total: 146
Language: 14
Social Relatedness: 71
Sensory/Motor: 34
Circumscribed Interests: 27
Last edited by Awake on 25 May 2014, 9:38 pm, edited 2 times in total.
She was already well acquainted with the sensory issues, and my eye contact is terrible, so I don't think it was much of a surprise, but I think she was receptive because she is trying to help me learn (music), and is always looking for insight into the way that I think, in order to communicate things better. She was forever telling me not to take things so literally, so I finally asked her "how do I know which things to take literally and which not to??" She was kind of stumped by that one and said she'd have to think about it. It was shortly after this that I told her, so that she would be better equipped to help me. Now when she wants me to do something, she is better about clarifying whether or not I should take it literally, or if it is more of a general idea.
ASPartOfMe
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Age: 67
Gender: Male
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Any urge I might have had just got a lot less after what happened in California, at least for awhile.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
My urge to tell has cooled down since I am not wowed by it anymore. (got dxéd around 1/9 13)
Attending the local aspergers group also helps, because I get away from theories and meet real people. They are a good mirror and my views on AS get a little more nuanced.
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Femaline
Special Interest: Beethoven
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