Diagnosis/When to tell other people

Post Reply New Topic

Hi. Sorry if this is the wrong part of the forum to post this but I wasn't exactly sure where to put it. For the sake of context, I am a woman in my early thirties and I have suspected for years that I might have some Asperger's tendencies. I recently read the book Aspergirls by Rudy Simone and I never imagined that the book would so closely describe my life experience! I identify with 90% or more of what was in there (my main points of disagreement were the fact that I do like to do handicrafts and cook, but I think that's because those things are like art for me rather than just socially acceptable womanly pursuits). I am feeling...I don't know...a lot about it, I guess. It's kind of messing with my head to think that this "syndrome" may define all of the things that I love best and hate worst about myself. I keep hearing that other people feel comforted by the diagnosis but I'm definitely not there yet.

Two questions: 1. Should I bother getting a formal diagnosis, or have you found that it's enough to just believe that you have Asperger's (or ASD) tendencies? Looking back, I think that my Asperger's-ness probably has negatively impacted me at work in the past, but I'm not sure that it would have made any difference if I had had the diagnosis anyway. Has it made a difference for any of you? 2. When and in what context do you tell other people? I've been thinking and feeling a lot of different things since I read Aspergirls, so I've tried telling some people I know about it, with mixed results. Today I happened to tell a whole group of people (9 or so) at once and now I'm feeling really exposed and regretting it, but it's been weighing on me and I don't know if I would feel even worse if I hadn't said anything...blegh. If anyone has advice it would be appreciated.

Thanks.

Professional diagnosis can validate one's suspicions and possibly make one eligible for disability benefits or accommodations at work.

A professional diagnosis is often expensive and difficult to obtain for an adult female due to the "traits" used to diagnose are based on boys. If you go that route it is of utmost importance to find a clinician who understands how Autism presents in women. These clinicians can be hard to find.

Many self diagnose before getting a professional diagnosis.

Based on reading posts from people on wrong planet who have disclosed the reaction to these disclosures has varied widely. People disclosing self-diagnosis are less likely to be believed then those who disclose a professional diagnosis but disclosing a professional diagnosis is far from a guarantee that you will be believed.

The realization that one is autistic often provides an explanation of why things happened in your life the way they did. Knowing you were "born this way" is often better for one's self esteem than the belief that one's problems are solely the result of being a "jerk" or a "ret*d". Knowing yourself better can help in preventing you from making mistakes

As I'm high-functioning enough these days to "pass" most of the time, I tell almost no one. My family and a couple of very close friends (who already had a high opinion of me) are the only ones so far. Most people regard me as merely eccentric.

For me, getting a DX has been a mixed bag.

On the one hand, it gave me the reasons why I have struggled. So through the lens of retrospect I could at least make sense of those situations. I have had my dx for over two years now, and I am having difficulty accepting the idea that there is something that I cannot change about myself. I agree with the dx, but it took watching other people talk about Asperger’s and how it effected their lives to really drive it home, because I have struggled in the same ways and still do.

What my dx has taken away from me is the convienience to dismiss problems or differences in my thinking compared to others as “oh it’s just them” or “ this guy is an idiot”. It has destroyed what confidence I did have in my abilities, because I am constantly now wondering .... am I perceiving this the right way, what am I missing, am I trying to control the situation, maybe I really do work a little slower, ahh this is why I have to read things 3 times before it sinks in, or this is why it takes me 3 times as long to learn a drum part or bass guitar part, the list goes on and on. I am consumed with the daily reminders of what I now know to be attributed to AS. When you don’t know, you don’t know and there really is a bliss in that. Regardless though, it still causes challenges in your life, but the “not knowing” allowed me to be dismissive. (But after a lifetime of bad social interactions, I finally figured out that the common variable in all of my challenges, was ME!)

Once I found out I tried to get various therapies such as social skills help, and OT for sensory issues. My experience with a Psychologist on the social skills front boiled down to him trying to teach me to be NT. He suggested taking in current news topics and sports stats, etc. So basically I either had to forfit who I was to relate to others or I could just not relate to others and be true to myself. I chose to be true to myself and not become “the actor” in those situations. OT in not available to me, my insurance wont cover it. (Although Virginia has just passed a law removing the age cap for ALL individuals with ASD). So there is hope on that front.

As for telling people, I do about 90% of the time. Here is why I do... I feel most peoples points of reference as to what Autism truly represents is limited. I know there are other adults like me that struggle day in and day out, and don’t know why. I feel if I can help someone update their point of reference then that is a good thing. I have gotten the “you don’t look autistic” and “but you are so well spoken” etc, etc. But what they don’t see is the dysfunction of my life, and the co-morbids that go with it, and my sensory issues, and troubles with theory of mind. I think most people are used to the idea that disabilities are visible. Unless I am having a meltdown, I pass as normal.

What I have experienced in the disability community for me has been the saddest. As a parent advocate, adults see me as that at first, when I tell them that I am also a self advocate there has been a noticeable shift in how people have talked to me. My perception is that they almost automatically expect less of me or they have seemed really surprised that I have done some of the things that I have done. Not just with other parents with children on the spectrum, just adults in general too. It makes me less inclined to disclose it because in my mind, I have done more than most people have done in a lifetime and I am the one with a disability. (Sometimes it makes me wonder what their excuse is). But I have felt judged by other adults within the autism community, and that was the last place that I expected it. I

As for work situations...that would be a case by case basis. Currently unemployed...so not really an issue at the moment.

Sorry this is so long. I feel a strong urge to share my experiences with other adults that are coming to or have already come to the conclusion that they might have Asperger’s. It helps me feel connected in some way, which is the complete opposite of how I feel with every other facet of my life.

Kind regards
Shark

I would never share my diagnosis or any other personal details except on a need-to-know basis.

I received a diagnosis fairly recently. I think the most useful thing about pursuing a diagnosis was actually that (in the run-up to the assessment) I was trying to write a sort of 'case history' for myself and this made me think about myself in more detail than I have before (e.g. some of the things I find easier/harder, some of the more structured way approach things, etc).

The main difference since it becoming clear that I have Asperger's is that I am trying to be kinder to myself about the things I find harder in life, or about some behaviour which is not completely 'normal' but that makes life feel nicer. However a person doesn't need a diagnosis to be kinder to themselves. Everyone has things they struggle with and it seems we all beat ourselves up (unnecessarily) over our 'imperfections' at times.

Getting a diagnosis can give clarity (confirming what someone already thinks), but can be very unsettling (as they see aspects of their life in a new light).

I didn't need a diagnosis for myself in a practical sense (as my life is quite settled in practical terms). However my oldest child was diagnosed a while ago and I began to feel that I needed to have some clarity about myself in order to know how much of my own experience I could draw on when advising them.

I think my main piece of advice at this point would be don't feel you have to rush. Maybe read some more books (so you have some more perspectives on common AS features), think about what you would want to get out of a diagnosis (and whether a diagnosis would actually give you that), and above all be kind to yourself.

I just discovered I'm autistic, at the age of 40. I have spent my entire life being weird/different/odd and struggling socially despite being very intelligent. I have struggled with executive function my entire adult life and it has only gotten worse as I've gotten older. I have been in treatment for treatment resistant depression, anxiety and ADD for 25 years, with only relatively good "control" of my symptoms since six years ago when my psychiatrist and I stumbled on a combination of medication that seems to work well for me. It helps me mask my autistic traits, but during times of stress, they come right back even with medication. I recently relocated out of state and since moving have had a number of stressful events happen, including my family being threatened by a psychotic neighbor and having to get a restraining order against him and go to court and testify (still ongoing) and my house burned down, a total loss two weeks ago... needless to say, I am having a huge autistic issue with change, and sensory overload being cooped up in a hotel room with my husband, two young daughters and large dog. It was in the middle of all of this that it dawned on me that I was on the spectrum. Everything I've read and the online tests I've taken put me on the severe end right now. I have an intake appointment with a psychiatrist next week to pursue a formal diagnosis. Having that will give me a sense of understanding about myself that has alluded me my entire life. It will validate me and that alone is worth it.

I have blogged for the last 11 years, sharing my story about being a survivor of childhood sexual abuse and my mental health struggles, as well as day to day life ... and I am debating sharing this publicly with my readers (I have a following of about 2,000 visitors a day). Still undecided about when to do that.