I will start off by apologizing if this gets long winded, I have a tendency to be when typing (ironic since I don't speak much in person). I am 27 and I decided to pursue official diagnosis of AS a few weeks ago. The choice to do so did not come lightly. I've always known there was something different about me. People just called me odd and I accepted and embraced it. I was, and always will be odd and I'm actually in preference of that. After the show Big Bang came on my sisters lovingly started to call me Sheldon (who has no official diagnosis of anything on the show, nor will he ever according to writers). It wasn't until a few months ago that a friend of mine was telling me how Sheldon was highly regarded as someone who exhibits signs of AS. Now prior to hearing that all I knew about AS was from the character Jerry Espenson on Boston Legal, who I am nothing like with the hopping, the popping noises and the hands constantly on the thighs. Due to my lack of knowledge on the subject I decided to dig deeper and find out more about AS. After reading multiple resources online it clicked right in. Everything made sense. The way I act, the things I say (or don't say), my OCD, my anxieties, my complete lack of social ability outside of the people I'm close to, my obsessions and habits. It was after a few weeks of research that my best friend (so far the only person I shared my possible diagnosis with) helped set me up with an appointment to be diagnosed. Needless to say my suspicions were confirmed. It was a huge weight off my shoulders. It's probably not an appropriate way to say this, but I no longer felt "broken" anymore. I always felt like I had so many random things wrong with me that there was no way they could be connected and no way I could get past them. I've been thought to have ADD/ADHD, OCD, Social Anxiety Disorder, and Bi-Polar Disorder. I'll admit I have Social Anxiety and I am OCD, but Bi-Polar and ADD/ADHD never seemed to fit me right. I certainly don't have focus issues, I just fidget and fiddle with things all the time. And my mood swings aren't random highs and lows, they are always triggered by something, but sometimes that event is so nominal it makes people think it was random.
My problem lies in telling other people. So far the only people that know are my best friend, who is 100% in support and is happy I finally have a diagnosis I feel comfortable with and two of my sisters who are somewhat on the fence, but support me anyway. I have a partner of 3 years and I know I need to tell him because it would be a tremendous help in our relationship if he knew why I acted the way I do sometimes, but I can't seem to do it. I know it is partly because I find it nearly impossible to express emotions verbally so every time I go to tell him my mouth opens, but words don't come out. Then another part of me thinks about when I had to tell my sisters (the only people in my family I am really close to). Their reaction was disbelief and them telling me I didn't have it and I was imagining things. Then their comparisons to everything as being normal behavior. Comments like "Well some people are just shy" when talking about how I don't interact well with new people and my selective mutism. And comments like "Little boys like bugs, it's normal" when trying to remind them that as a kid I would collect and study insects and read/study field guides to insects from cover to cover or hearing "You're just a 'disordered eater'" when telling them why I'm a picky eater because I hate certain smells and textures of foods or food that are over-seasoned. When I tell them I follow the same routines every morning and I do the same things over and over (including eating my food in a specific order) I'm told everyone has routines and systems for doing things. When I tell them it makes me angry and frustrated when a system or routine is broken they tell me that's normal (maybe it is?). These are just a few of the many things said. About the only thing they thought was weird was that I used to read and study the dictionary and encyclopedias.
The reaction of my sisters seemed to be more on the lines of "What makes AS different from regular old personality traits?" And I struggle trying to describe or explain it. Maybe it's because I'm not really sure, much of it does seem awfully subjective to standard personality traits. Some people are just shy or socially awkward. Some people do have specialized topics of interest, that's how people choose their career paths. Some people are just OCD and/or have anxiety (though theses are co-morbids to AS). It's hard for me to explain my feelings in certain situations so I don't think they understand the intensity. I feel like by telling people, even if it is only the people closest to me who it may also affect, I also have to be in a position to defend myself from backlash. I usually pull away and "shut down" when I have to talk about emotions and even more-so when I need to defend my position on something involving emotions so I'm not sure how I should go about addressing this with my partner and other family and close friends. My sisters came around, one of them bought me books and bought herself books to educate us on the subject so that was nice... in fact "Asperger's From the Inside Out" by Michael John Carley is what led me to this site. I know it would take time for them to adjust to the idea (it took me a bit too), but it just seems so daunting to have to go through that over and over with each person. I'm tired just thinking about it.
Enough rambling. To sum up my overly-personal statement above. I'm just wondering how other people face the backlash and skepticism that comes with revealing your diagnosis as an adult? According to the books this is common, but the clarity on what makes AS different from many personality traits is what always gets me because there always seems to be a "normal rationalization" for all of the behavior associated with AS. Couple that with resources always saying "Some people may have these symptoms and other people may not have these symptoms" it gets really vague and confusing as to what actually defines someone as having AS. I try to explain that a lot of it has to do with context and internal thoughts and feelings, but I don't know if I explain it correctly or if I am even correct. With everything that is going on with the DSM-V debate with them possibly changing the diagnostic requirements for Autism and AS it seems like this is a touchy subject and a lot of people seem to think it's all vague or subjective. I'm just trying to learn as much as I can and educate myself so I can better address the subject.
Hi, Shane - thanks for the honest and open post.
You asked "I'm just wondering how other people face the backlash and skepticism that comes with revealing your diagnosis as an adult?" One thing is to tell people that knowing your diagnosis is a good thing for you - you don't want their sympathy. In other words, you want them to know something you've just understood that is really helping you, and that knowing your dx helps you to understand where you fit in, and how you can best reach your goals. I think one of the reasons many people who hear react with skepticism is that they misunderstand - they think the "newly diagnosed" guy is asking for their sympathy. In reality, though, as you wrote "I don't feel broken anymore" - this is great news that you're sharing with them because they're close to you. Hope this helps !!
Thank you Alison. That does help. I understand now that their reaction might be because they think I am expecting sympathy. I suppose I never thought of it that way as I wasn't expecting or asking for it so it was an angle of response I didn't prepare myself for. Now I'm wondering if the defensive responses were really just ways for them to try and make me feel like nothing is "wrong" with me because they don't understand the diagnosis and the fact that I know there is nothing "wrong" with me... I'm just different.
Something for me to ponder on.
My name is Kevin, I joined the other day on this site in response to reading parts of Atwoods book. I was diagnosed with ADD when seven years old. Since then school and extra-curricular activities was a major challenge. I had to put so much seemingly extra energy in to applying myself to get passing grades. I like sports too but it was pass school or sports. I had problems with sports when there was lots of confusion and loud noise. My body and face would lock like this huge magnetic beam was pulling at my muscular system. My special interest was Joseph Campbell mythologist. Then read book he liked. I really got into the books he read. He loved James Joyce Ulysses & Portait of an Artist as a Young Man. While doing that for spirituality. Then more recently got into Trappist Monk, Thomas Merton. I read many of his books. The spirituality helped me the most. However, some spirituality is non-inclusive "the we got it collective ego kind with allegory of a poker-face holding back" exacerbates me with negativity.
@Qwerky Chicky: I definitely agree with you about having the "safe" people to talk to. I am sorry to hear that you have family members that have rejected you long before you found out about AS. I am fortunate that my family is relatively supportive of each other and have always embraced my "odd-ness." My family is not close-knit at all, we have all gone our own separate ways and only keep in touch for major family events and holidays. It's an awkward dynamic. Communication outside of these time-frames automatically instills a fear of something major like death or terminal illness. Though a reaction like "Oh, is that it? Geez! Don't scare me like that! I thought you were dying!" would be a relief after telling someone. I suppose it just comes down to being able to remove the blur on the line between "safe" and "easy"... someone could be safe to tell, but it doesn't make it easy to tell them so my mind starts automatically conjuring up reasons why it might not be safe either.
@Kevin Kelso: I was always an honor student in school. I think my lack of any social abilities and my love for learning new things definitely helped me get through school without many distractions from the school work. Focusing on the subject of learning actually helped me with my social anxieties because I hated being trapped in a classroom with a bunch of kids. The hallways between classes were always an absolute nightmare as well. I would literally hold my breath (not on purpose, automatic reaction) and run to the next class so I could be the first on there in an empty classroom and catch my breath again. I carried all my books and supplies with me all day so I wouldn't have to go to my locker. School was a nightmare for me when it came down to the social aspect. I've never been much for sports. I require time to think about a plan and execute. I have never been one who has been good at "quick thinking" and last minute improvisation which are essential in sports. Then, as you mentioned, too many sounds and too much going on is debilitating. It's like an instant off switch. Too many factors, too many variables, too many outcomes, so little time to process and react. It's maddening and completely un-enjoyable. My special interest growing up was insects and arachnids. In my late teens it became computers when I started to learn about them so I could build my first one as it was the only way I could afford to own one.... by buying parts individually as I saved for them and assembling it in stages. That somehow led to interests in graphic design, programming, and web development. Somewhere along those lines smartphones have become my latest obsession. I can often pick out a make and model when I see one on a TV show or in a movie. It's like I just keep culminating interests and hoarding them.