Aspie Like Me: A Diagnosis Story

This post is an important one to me, folks. Naturally that means I’m going to do something most people do when they are discussing matters of deep personal introspection. I am going to quote an Adam Sandler movie.

In the movie Punch Drunk Love, Sandler’s character is talking about how he doesn’t know if he needs to see a psychiatrist.

“I don’t know if there is anything wrong,” he says, “because I don’t know how other people are.”

I saw that movie back in 2002 and I barely remember the plot, but I remember that line. It touched something in me that I’d felt for a long time. Something was different about me, but I didn’t know if it was real or just me imagining that I felt different than everyone else. How could I know?

For the most part though, what did it matter? I was living my life, I was doing my thing.

Then I had Jack and he was different too. And I started to learn about autism. When I would read books about autism, I would see myself in them. I make notes in margins of books when there is something I want to remember and in these books about autism I would sometimes write “Jack” with an arrow pointing to a passage and I would sometimes write “me” instead.

I would read things written by adult autistic individuals and I would recognize myself.

I would think back to my childhood and my teen years and my young adulthood and I would remember the choices I had made very consciously to adopt ways of being to be like everyone else and I would also remember some of the completely clueless things I had done. I would read about autism in children and young people and recognize thoughts and actions from my own childhood.

I would read about autism in girls and women and nod as I learned how it is different for them.

I read so many times that parents of children with autism were diagnosed after their children. I wondered if I should be one of them. I wondered if it was the power of suggestion or if I really was different. I didn’t know, because I didn’t know how other people were.

Several years ago, I recognized my sensory processing disorder and very confidently self-diagnosed myself. In this case, I knew how not like everyone else I was. My auditory issues are the most intense, but I have very significant tactile issues and, to a lesser degree, some other sense issues. Learning that my aversions were based on my neurological makeup and not just a result of me being kind of uptight meant a lot to me.

That SPD self-diagnosis was a huge relief. I had spent years thinking something was wrong with me because I could hear—and was intensely bothered by—sounds that no one else noticed. I made a lot of people feel bad because I didn’t want to be touched or, in certain cases, hugged before I could tell them that there was a real reason. I could go on (trust me, I could go on), but I think you get the point.

I have said, “I could well be on the spectrum myself,” more times that I can count. I would toss off that phrase casually, and for a long time that’s how it felt. I was fine. I was living my life. I needed to help my kid.

So I did. And I did. And I still do.

But after a while, “I could well be on the spectrum myself,” became, “I think I’m on the spectrum,” and that casual feeling became less casual and started to feel more like self-knowledge that could help me come to terms with my head space.

I have never been a person who would be comfortable self-diagnosing myself as someone on the spectrum. I respect those who do, but in addition to all the time I spent wondering if I were on the spectrum, I also spent a fair amount of time questioning if I could be. After all, I had adapted so well to the world. People who know me would probably never suggest that I’m on the spectrum. What if I were wrong? I needed something definitive.

Something definitive, however, required saying, “I think I’m on the spectrum,” to someone other than myself. I turned to Sharon daVanport of the Autism Women’s Network and sent a neurotically long email to her. I will probably save her response forever because it was so very kind and supportive. Her words confirmed what I felt and also gave me a tacit permission to pursue a diagnosis. I will be forever grateful for the time she spent writing back to me.

My next steps meant that I actually had to talk in person to three-dimensional people in my world. After years of casually talking about it, it took me a really long time to be able to get the words out to Alex. I sat on a couch on the opposite side of the living room from him and watched him read on his computer for a long time as I tried to get my mouth to say the words: “Do you think I could really be on the spectrum?”

I didn’t tell anyone else. It wasn’t something I could say to anyone. I don’t know why. I just couldn’t. Although to be honest, there are a lot of things that I just don’t say to anyone. It’s what I do.

I don’t know that Alex understood my need for a diagnosis, but he was extremely gracious in accepting that I wanted to spend a fair amount of money to get one. From there, it was a matter of finding someone with the skills and availability to assess me.

I wanted to make sure that I got the right person because I really wanted an answer. I wanted to know if I was on the spectrum, but I also wanted to know if I wasn’t. I needed to know if I wasn’t, then what was I? Was I like everyone else? Or was there something else going on in my brain?

I was able to find someone after a few weeks and we spent several hours together over two sessions doing the testing. When we met to go over the results, I felt that I already knew most of what she had to say.

I ended up with an Asperger’s diagnosis.

I also ended up with diagnoses of dysthymia and anxiety, which will probably surprise no one. Those actually knocked me for way more of a loop than the Asperger’s could have. Especially in terms of some things in the report, which I recognize as completely true, but were a little difficult to hear.

For example, I like to look welcoming, but I really have my guard up at all times. Evidently the picture I drew of a house helped her come to this conclusion. I think it might have had something to do with the fact that I drew curtains and a cat in the window, but then I drew what looked like bars over it.

(They were supposed to be window panes, not indicators of my demeanor as a porcupine, which is something Alex has called me for a long time.)

I know that a lot of people I know will be surprised by my Asperger’s diagnosis. Even when I tell people about something so common as my social anxiety, people are surprised and say they would never know. I understand this. I have adapted extremely well. I am very good at watching people. I have had nearly 39 years of practice.

I know how to act. And when I don’t know how to act, I know how to not act so that people don’t know that I don’t know how to act. It’s a fair amount of work and one of the reasons it is hard for me to be one-on-one with people I don’t know well. It is much easier for me to hide in a small group.

I know how I present myself on the outside, but I also know that my inner world is very different. I recently came across this blog post about “hidden Aspies” and saw myself in it. I showed it to Alex and he saw me in it too. Sometimes the inside doesn’t match the outside.

I am very grateful to have this new piece of information about myself. I don’t consider my diagnosis to be an answer to all my life’s problems, nor do I consider it to be a deficit. What I see it as is a new lens to see my behavior through.

I learned that SPD was responsible for me being able to hear that guy playing his stereo six houses down that no one else could hear, and that if I didn’t want to have to leave my house completely, I would have to find a way to block it out. That knowledge helped me understand that it was because my brain was wired a certain way and not because I was a mean lady who didn’t like anyone else to have fun.

I hope that my Asperger’s diagnosis will do the same. I hope that it will let me continue to try to be the person I want to be while being able to adjust my expectations of what I can do. Understanding that my neurology is responsible for some of my difficulties might help me go easy on myself for having them. They are not character defects, they are a result of the way I am wired.

I am not a different person than I was just because I have a diagnosis. But maybe my perception of myself will be. It will be interesting to continue down this new path in my personal journey. As always, I hope you come along.

134 thoughts on “Aspie Like Me: A Diagnosis Story

  1. Knowing yourself better is always a good thing!  Good for you, for facing yourself head-on.  I think of my own parents and how their blindness to the worse aspects of their personalities made them worse parents (and people).  Your taking these steps make you an even better parent and partner and friend.  Can’t wait to see where the journey takes you!!

  2. Thank you for sharing this.  I have felt the same way for a long time.  Do you feel that you have benefited from receiving a diagnosis?  I go back and forth about pursuing one for myself or not.

  3. Wow, Jean. Not entirely unexpected, but, Wow! I am so glad that you got your diagnosis. It was a brave thing to do, and really wise. Everyone else I know who is a late-diagnosed aspie has said they felt such relief to have a name and a label and finally understand the why of so much of themselves.

    It’s a lot to process, I’m sure, but congratulations. As I end up saying over and over: the apple doesn’t fall far from the tree. So many of us parents of kids on the spectrum have our own spectrummy issues, often undiagnosed.

    Cyber-hugs to you. (But I promise I won’t try to hug you for reals at BlogHer.)

    • I just found this site and need to talk to someone. I have a 39 yr old son recently diagnosed Aspergers. He is 2nd of 4 boys. only one with Asp.
      I so wish we’d known when he was a kid but there was no info on Aspergers and we thought he was just different and difficult. His life just blew up on his this last year and now he is back home trying to start again. I love him dearly but it is so hard to see his struggle. I am determined to help him but don’t know just the best way to go about it.
      It is so hard not to hug him!!!

      • Hug him with your eyes! They are aware of this because of their extreme sensory intake. He’ll see it if you ask him to look into your eyes. Or, ask him to hold you. I have learned with my adult son with autism that he likes to feel he is needed and it takes his mind off his own issues. Much love and prayers for your situation.

  4. I am pretty sure you are the bravest and wisest and most thinking/thoughtful person I know.

  5. I also go back and forth on pursuing it. I know that I’m on the spectrum, I don’t know if having a doctor tell me what I already feel is true would make a difference. (I’ve done years of reading on it . . . but I also feel a little less legitimate being self-diagnosed, even if I did it very methodically.)

  6. I’m sure this wasn’t a big surprise to you! I love the term “hidden aspie.” I can totally relate to that! I’m sure I’m on the very high end of the aspie spectrum (self-diagnosed, of course). The thing that was most eye-opening to me after my daughter’s diagnosis was how much I enjoyed hanging out in my house after having my daughter. I realized how much of an introvert I am. Before my diagnosis, I thought I was the world’s biggest extrovert.

    It was all totally an act that I did for YEARS! Of course, other things began to fall into place: my fear of loud noises, inability to filter my thoughts at times, monopolizing conversations, etc.

    Just making the realization was enough for me! Whether it’s official  or not is less important!

  7. knowledge is power. self-knowledge is everything.

    i love you to pieces, my dear. and i get it. all of it. 

    i’m very proud of you, my brave friend the verb. 

  8. I love you so very very much.
    You are incredible and I am proud of you for pursuing this to know more about yourself.
    I can’t wait to see you.

  9. So very happy for you. As DOAM wrote, self-knowledge is everything. I hope this new self-knowledge will allow you to give yourself permission to just BE who you are AS you are. Those of us who already know you love you for ALL of you. So very proud of you, my friend. xoxo

  10. Recognising that others appear to rely on unspoken social understandings and learning how to mimic their responses must, I think, be an almost wholly female (hidden Aspie) ability. We should all be given Oscars for our performances!
    I think my eureka moment was seeing our eldest wearing two pairs of sunglasses to try to reduce the overwhelming dazzle he experiences on even fairly dull days and remembering that sense of being overwhelmed by noise and light in my own childhood. That and the sense you describe so perfectly of feeling somehow always slightly out of step with the rest of humanity.Knowledge is power! 

  11. 1) Knowledge is power. ALWAYS. Rock your power, girl.
    2) You are awesome and I love you.
    3) Sharon is also mucho awesome and one of the most caring, generous souls I’ve ever had the good fortune to know. Knowing you two have connected makes me double plus happy.
    4) Did I mention you are awesome? Because you are.


  12. The minute I saw the title I nodded.  I’m not sure why.  Something just clicked in my head.  Maybe because you always talk about how uncomfortable you are in social situations.  I think this is wonderful, and I hope brings you everything you need to help yourself.  

  13. You are amazing. And brave. Ditto to the whole “knowledge is power” mantra here. Now that you know, well, it’s only the beginning. You are an inspiration.

  14. I’ve had this discussion with some of the other bloggers.  I definitely see myself somewhere on the spectrum, or at least on the fringes of it.

  15. I think this is really inspiring. When I look at you, I think “this is a person who is successful. She’s found a great writing niche, she has great kids, and even though she says things are hard for her, she’s getting by. And, when I attend events with few people I know and she’s there – she’s always nice to me, even though it must be terribly difficult.” Which to me means that others in the same situation have someone to look to, be inspired by, and benefit from all the advice  / reflections / stories you share. I’m glad you have the diagnosis, because now you have confirmed for yourself places you can look for inspiration, tips, help – whatever you need. This is so powerful – for you and for people who follow you. Plus, your friends adore you, diagnosis or not. I know this migh be hard, but think about all the times you’ve said or thought that Jack is rock star because of his quirks. That’s true of you, too. People don’t love you in spite of your quirks, they love you because of your quirks. But really, I just keep thinking – that it is so awesome that Jack has a confirmation that you can be his North star. That you get it.

  16. Thanks so much for sharing. I’ve struggled with this myself, alternating between just thinking I’m a hypochondriac, and wondering if my thoughts along this line were some twisted need to place “blame” on myself for my son’s diagnosis. I’m sure this post will mean a lot to a great number of parents.

  17. I am so proud of you for pursuing what you needed to know. Even though we are all about sharing our stories and our kids’ stories, I think you are so brave for sharing this.

  18. You have no idea how happy I am that you shared this.  Knowledge is power, and while having a diagnosis in itself doesn’t do much, learning more about yourself as result is always valuable.

    I’ve never sought out a formal diagnosis for myself yet (other than ADD, which my doctor recommended screening me for), but I see a lot of me in what you wrote and in the other post you linked to. My kids’ pediatrician already thinks I’m on the spectrum (she assumed it once during a checkup, then was terribly embarrassed when I said I’d never been diagnosed) so it could be possible.

    I’ve considered speaking to someone, but then worry I’m just being neurotic and it’s all in my head. I’ve done so well at hiding myself and watching others for how to act over the years that I don’t even know what’s spontaneous behavior or a scripted action anymore.

    Thank you so much for sharing your story. You’ve given me more to think about now. (Please tell me you’ll be at BlogHer this year – I’d love to catch up!)

  19. I think it’s great that you did this – I bet there are a lot of adults out there that were never diagnosed as children who are struggling with not understanding themselves and their own behaviors and feelings, it must be such a relief for you. Also, I love your blog. It’s been very helpful and comforting to read since my daughter was diagnosed with a spectrum disorder recently.

  20. I can relate to so much of what you wrote here, Jean.  I waffled back and forth for a very long time on the question of whether I needed to pursue an evaluation and am so glad that I did.  I have written more about that journey at a separate blog (partly to be free to write openly and partly because most people aren’t interested in the “neurotically long” stream of consciousness stuff, although it’s been amazing to find that there are others out there who like it as much as I do!).  Anyway, I haven’t been writing as much lately but I read and respond to all the comments, so feel free to respond to any of the older posts if you are so inclined.  The website is

  21. Hmm, I had posted, but don’t see my comment. Just want to say that I think it’s great that you pursued the diagnosis. I agree with the knowledge is power…and you’re an inspiration. Thank you for sharing your story.

  22.  I had left a comment as well that isn’t showing up anymore.  Weird!

    Anyway, Jean, if you didn’t see my earlier comment, I’d love to connect more on this topic with you at my other blog, Aspergirl Maybe.  It’s at aspergirlmaybe(dot)wordpress(dot)com.

  23.  I think if I had been sure, I wouldn’t have felt the need to do it. I don’t know that a diagnosis by a doctor makes you any more legitimate. It definitely sounds like you have put a lot of thought into it.

  24.  I hear what you say about the apples. It’s totally the truth. And, yes, I’m feeling that relief as well.

    I’m okay with certain hugs. Friend hugs at BlogHer sound great. :)

  25.  I think it is so fascinating, that way of adapting even without knowing you’re doing it. And I know what you mean about it being official not mattering to you. It did for me, but I completely understand why it wouldn’t matter to someone.

  26. Oscars for all! :)

    And it’s interesting how you can see things in yourself by looking at your children, huh?

  27.  It’s a hard battle to have with yourself. I hope you find a space where you are happy and I hope you don’t take any blame. You and your son are both who you were supposed to be. Love to you.

  28.  I agree: knowledge is power. It sounds like you and I have walked similar paths. And, yes, I will definitely be at BlogHer!

  29.  I’m so happy to hear that my blog has been a help. And I do feel that this may lead to a better understanding of myself.

  30.  Thanks for letting me know. I’m happy to have found a sister in “neurotically long” writing. :) I will definitely check it out. Thank you.

  31. Good on you for advocating for yourself like that and getting what you need. So happy for you. Knowledge is power and knowing yourself is so very important for long term happiness. Understanding why you think, feel and react the way you do is so important. You are an inspiration!

  32. Jean I can relate to soooo much of this. I have never felt particularly compelled to seek a diagnosis, although you given me a lot to think about regarding that. I’m glad you shared all this! 

  33. Will you be C’s Aspie Godmother? You can show up with a wand every now and then.

  34. I am so glad you are feeling good about knowing yourself and getting information from experts to confirm that you aren’t crazy, you really are different. Identity and understanding can be really important parts of life that few people want to talk about, except to joke about the sudden need for a sports car when we suppress the need to know who we are and why we experience life the way we do. 

    There’s a reason most major charisma-centered religions arise when the central figure hits the age of 30. It’s not really a “midlife crisis.” Its that our brains suddenly start a new way of understanding and thinking about the world and how we are existing in it. But seriously? Not surprised at all. You’re like me. I don’t meet many people like me. So I already knew you were different. And awesome. And best of all, you’re an awesome writer, and can share how this works and feels and happens to everybody else, so we all don’t feel like we’re just crazy. 

    Well, not completely crazy. 

  35. thank you so much for sharing this.  it definitely gives me food for thought.  and, for some reason, makes me so glad that i made myself talk to you at BlogHer all those many years ago, so that I can pretend I know you in person too, and not just on the internet. 

    i hope this doesn’t sound weird (or inflated), but i have had a similar experience recognizing myself in the reading I have done about “giftedness” (i wish they called it something else like dyslipoblanogos–then you don’t sound arrogant talking about it).  sometimes i wish there was a way to pursue how to live a regular mommy life when your brain is doing crazy things and needs something else to stay happy (see, i don’t even really know how to define what i need).

    thanks again for sharing…

  36. Doesn’t change a thing for me: I think you are amazing, awesome, gorgeous and the sweetest!  I hope that this diagnosis will empower you and bring you all kinds of good things!  I *know* that I have some type of SPD, but like you said, I’ve learned to manage.  Next time I see you I hope to give you a big hug!

  37. I know that you must be having a little difficulty adjusting to this new perspective you have on yourself, even if you have always had a sneaking suspicion.  That being said, you have to be one of the luckiest ladies alive receiving a spectrum diagnosis.  You are already surrounded by a community of people that love and respect you just as you are and will be there for you all the way!  Good luck in your journey ahead.  You know we are always listening.  :)

  38. Wise and courageous, you are. So glad you found the answers you were seeking, and I love how Alex supported you in your quest. LOVE YOU!

  39. Do you mind describing what the testing consisted of and what type of professional did the testing? Like you, I undoubtedly have SPD and have been diagnosed with depression and various anxiety disorders over the years. I had neuropsych testing as a teenager (I’m now in my 20’s) because several therapists suspected ASD. My testing consisted of picture prompts, rorschach cards and visual processing tasks, but nothing on social interactions, body language, etc. The evaluator said the results showed that I see the world differently from most people and will never fully fit in, but that I am not on the spectrum. She used the fact that I volunteered with ASD youth and had an intuitive understanding of/connection with them as proof that I’m not autistic (I still don’t understand this reasoning). Every self-assessment I take tells my I absolutely have Asperger’s. The only people I “get” are those I know or suspect to be non-NT. My social deficits have caused my personal and professional problems (no friends, lost opportunities). I have never seen the movie you reference, but I often have that same thought…am I really different? am I making this up? do other people just try harder? I’ve mostly come to terms with the idea that I am just “different,” but at times I think having a concrete explanation for my otherness would help me to stop blaming myself and give me some peace of mind, as well as access to a whole new network of support. 

  40. I recently received an ADHD diagnosis and it was such a relief, once the shock wore off.  I too have adapted very well–no one who knows me (besides maybe my husband) would suspect that I have it, but it explains so much–how my brain would never shut off and it was honestly driving me nuts! Mostly, it has helped me feel a lot less crazy than I was feeling before.

    Still, actually talking to someone about my issues was very difficult, so I think I can relate a little bit to how hard getting your diagnosis has been.  I admire your bravery, and I hope, like me, your Dx actually provides some relief and understanding.

  41. I’ve contemplated this myself too, the number of times I’ve seen something in my daughter, and thought, “me too.”  I definitely think if the Asperger diagnosis (and how it applies to girls) was better known when I was a child, I’d have been given it.  These days, I’m not so sure- is that because I’ve learned to adapt, or because the label doesn’t really fit.  I’m not sure, and it probably wouldn’t make much difference to me.  I’m sure this will bring you greater understanding of yourself, and a new place in a proud and supportive community.

  42. I hope you don’t mind me adding our experiences here, but even though I strongly suspected our eldest was autistic when he was wee, it took I think 4 specialist assessments over about 6 years before we received confirmation of this. 

    During that time he was variously diagnosed as; simply an unusually quirky child; as possibly slightly dyspraxic/dyslexic; and as severely dyspraxic, but not autistic.

    Finally we managed to get him assessed by the most senior Professor of ASD in Scotland who said that he was totally right slap bang in the middle of the spectrum, no doubt whatsoever! Finally everything for us, and him, slotted into place.

    We certainly weren’t hoping he’d be autistic, we just knew he was and desperately needed that to be recognised.All I’m saying is that for us and him it was worth doggedly pursuing what we believed was the case all along to reach a point when things made sense. Only then can you get the help you need and start moving forward in a positive way.

  43. Talk about putting on your own oxygen mask.  How very brave of you to face what you were reluctant to face.  How fantastic for you that you have a whole new set of tools opened up to you for understanding your own reactions to things and coping with them.  I hope that this diagnosis will help you to discover more ways to be happy and comfortable in the world instead of just pretending to be. 

  44. As someone who has just begun to recognize that I may share many of my son’s ADHD issues, I found this post fascinating.  Kudos to you for your self-awareness and for taking the time to assess and be assessed.  Self-awareness is a difficult but ultimately liberating thing.   I see good things on the path ahead for you.   Onward!   xo

  45.  I’m glad we talked then too. :)

    I totally get what you say about the giftedness thing. There are definite similarities. And I love dyslipoblanogos, by the way. Just let me know how to pronounce it and I’ll start using it. :)

  46.  You are completely right. I’m in the right space to be able to do this. In fact, that is probably why I could.

  47.  I think you might know already. And it’s okay to own that even if a professional didn’t tell you. And regardless of what the reason, you shouldn’t blame yourself for having a hard time with certain things. (Easier said than done, I know.) The testing I went through was very similar to what you describe above. Although it sounds like you were evaluated by someone who doesn’t understand that people on the spectrum can and do have very strong connections with other people. I would suggest that you start exploring those support networks and see if they fit you. Because in the end, that’s what really matters, more than a formal diagnosis.

  48.  This is what happened with Jack. We pursued that diagnosis for a long time. It felt absurd that no one could see what we did. Finally, like you, we found someone who could look past his not totally typically autistic presentation to the kid himself.

  49. Thank you for sharing this. It was very brave of you.  It shouldn’t have to be a brave thing to admit, but it still is. Good for you.

  50. My niece has SPD and I have wondered about that myself. I definitely have the depression and anxiety.  Again, I think it is so brave you posted this.

  51. Once again, you are so amazing!  Not only are you taking such awesome care of your kids, you are taking awesome care of you.  I think you need to come speak to my kids at my school.  I think you would be really inspiring!   And I promise, we will have lunch some time in the relatively, not so far distant future!!!!

  52. This is a wonderful introspective post. There are probably many parents out there who think they may be on the spectrum. It’s a completely logical thought if their child is on the spectrum! I’ll bet many parents don’t seek a diagnosis though, for fear of being thought of as jumping on their child’s autism bandwagon! You know, autism is so cool that everyone wants it! *sarcasm* Good for you for seekng help and a diagnosis! It’s what you need and it will help all of team Stimey in the long run. Also, if we want to remove the stigma for our kids, we shouldn’t be afraid to talk about ourselves either, right?


  53. the most hilarious thing about that word is that my daughter was watching me type it and she told me to add the “gos”–i had stopped when i noticed i some how had inserted “poblano” in there…

  54. And when it matters to me, (or I’m in one place long enough) that would be the very reason I would pursue it further too.  You are brave, wise, and inspirational, but then again, you always were.

  55. This resonates with me.  I have often wondered if there’s something Aspergers going on with me.  I clicked on the link and read it and can relate to “Joe” too, especially about being able to manage a certain amount of social interaction before having to head to solitude to de-stress.

    Thank you so much for this post.

  56. I cried when I read this. Not sure why. I admire your courage, your parenting and your ability to put into words what you think and feel. For years of reading your blog I have seen the way you relate to Jack and his view of the world, and the closeness and you two share. Glad you got a diagnosis and it has brought you some closure. You are you, and Aspie or not, always wonderful. Thank you for sharing your life with the rest of us! Love from AK :) where we still think of you often!!! 

  57. I can’t read through all of the other comments, as it will make me feel more emotional than I can handle right now.

    But… this bit – “I know how to act. And when I don’t know how to act, I know how to not
    act so that people don’t know that I don’t know how to act. It’s a fair
    amount of work and one of the reasons it is hard for me to be
    one-on-one with people I don’t know well. It is much easier for me to
    hide in a small group.”  That is EXACTLY my little man to a tee.  I’ve never been able to put into words what you so perfectly described right there. 

    I’m a new follower and fan.  I’m now committed for life! (Poor thing…)  You are a brave soul for writing this and an inspiring soul for pursuing your own diagnosis.  Just so you could simply feel more comfortable in your own head space.  That alone was worth it, I’ve no doubt. 

    Awesome! Just awesome.

  58.  Absolutely on the lunch! And anytime a kid needs me, I’m there. :) Although “inspirational” is less accurate than, oh, I don’t know, “bobbleheaded” or something. :)

  59.  That is exactly it. I totally went through all of those emotions you describe. And your last sentence is so key to my process. I am trying so hard to raise a proud, autistic man that I have to set an example as well.

  60. We have so much to talk about! I relate to a lot of this, mostly the SPD but the social stuff, too.

    I’m glad you got some answers. I think one of the main tasks of this phase of life is easing into who we are, for ourselves and not whomever else we thought we should please all this time. It’s the best thing to do for ourselves and our closest people. You especially deserve it.

  61. Hi!  
    First of all, thank you for an excellent post. I’m glad you learned some things that will be helpful. Not that I necessarily thought you needed to learn anything, as we’ve never met. :)

    The comments are also awesome!  

    So, has anyone ever discussed / considered the relationship between adult ASD diagnosis, and that Myers-Briggs MBTI assessment that many of us have taken?  
    I wonder whether there is ANY correlation between the two.   

    [I might be using the term ASD incorrectly.]

    I recognize that ASD is a formal diagnosis, and MBTI isn’t. [Disclosure:  I don’t do MBTI assessments; however some former colleagues of mine do. So, thought I should mention that.  I’m not promoting them on your blog!]

    The reason I ask, is that my MBTI ‘type’ is INFP, or xNFP [the ‘x’ means somewhere between introverted and extroverted.]

    Anyway, your comment that ‘I know how to act. And when I don’t know how to act, I know how to not act so that people don’t know that I don’t know how to act’ really resonates.

    Personally, I do best in either one-to-one conversations OR small groups. Large groups and events? No. [I used to go to huge black-tie parties in DC, and honestly those were not easy for me. I once went to an inaugural event for the OTHER party. Not very enjoyable, to say the least!]

    I’m really sorry if mentioning MBTI is disrespectful of anyone who is on the spectrum. It just struck me as perhaps slightly relevant – or, maybe not!  :)

    Finally, I don’t recall commenting on this specific post earlier. If I did, then please disregard *this* comment.

    btw, I’m just taking a break from editing a really interesting paper that is taking all of my best editing and graphing / visualization skills. It’s pro bono – and *not* for my usual client – so, I’m still learning as I edit. Hopefully the result will be good!

  62. I totally understand why you might want a diagnosis.  It dots the i’s and crosses the t’s on a lot of words you had trouble spelling over the years.  Or something.  But really – don’t many people want to know why they do the things they do, why they think or say some things?  I don’t know, I’m thinking it connected the dots for you and explained a lot of things.  Good for you for pursuing it – for some people it would be too scary!  I think if it were me – I would want to know too, if I suspected there was something to know.  

  63. Great story. I was diagnosed last year at age 40. I have never been that good at ‘faking it’ though, and have always been socially awkward and introverted. But I am slowly learning to accept the way I am.

  64.  I liked this a lot. I didn’t get diagnosed until college, actually last semester, but I knew for longer. (I spent ~10 years suspicious and actively trying to avoid dx first…)

  65. I hate it when I get so far behind in my blog reading that I didn’t know this when I saw you – twice – and this was probably already published.

    Count me as one of the surprised, but also impressed with your awesome skills.

    And as weird as this sounds, congratulations for finally having the diagnosis. It does matter. I also love it that you are open about it here. I think that is so important for other people that have always wondered.

  66. I don’t remember if I already commented or not so I am going to comment again. I think you are so brave. I am really just in awe of you. I have long suspected that I have a learning disability (I cannot do math to save my life) but I have always been too scared to get myself a real diagnosis. Not to say that Aspergers and math stupidity are the same thing but that I know how daunting the process of getting a diagnosis can be. None of it changes you, you are still the same amazing Jean but now you just know yourself better. You’re even more amazing than before. And brave. Did I mention brave? Yup, you’re pretty much my hero.

  67. I just read this, and…wow. Me to the very last sentence. With the exception of not having gone to get a diagnosis. This is what I have an issue with. Same as you, I’m having a hard time finding someone truly qualified to give a true diagnosis. Of course, I have no idea where to even look. I’ve suspected not only myself but also my oldest son have Aspergers. Any point in the right direction?

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  70. Back in 2007 I mentioned Asperger Syndrome to my psychiatrist as a result of a conversation I had had with my therapist at the time. I really didn’t know very much about it back then, only that it was related to autism. Having a cousin on my mom’s side with autism and 2 uncles with similar problems on my dad’s side, I was curious. The psychiatrist said, “No, no, you don’t exhibit any of the characteristics of that disorder,” and chose to label me as Bipolar instead.

    I have since read extensively about autism, Asperger’s, and sensory processing disorders. Nothing I have been diagnosed with in the past described me so closely, so accurately; and believe me, there were so many different diagnoses. I always felt there had to be an underlying reason for the depression and anxiety that I had felt since childhood; but those were always addressed as the problem, not a symptom. I finally gave up on psychiatry in 2007 after 13 very long years of trying to find an answer. I developed quite a fear of psychiatry as a result of my overall experience with it and the psych-medications. At the age of 40, I feel like one who slipped through the cracks of the system.

    • I have heard from a lot of people who have been misdiagnosed over the years and who have felt so let down by professionals. A lot of psychiatrists seem to not know how to deal with adults, and especially women on the spectrum. I’m so sorry you have had to go through all of this.

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  72. I’ve been told I didn’t quite match all the symptoms, so maybe I should just be Aspergic (I saw the term in an online forum) tendencies or maybe it’s a girl thing. Since it’s different for girls, I could just be girl-style.

  73. Thanks for sharing! I love reading other peoples stories. I’m very happily self-diagnosed. I love your description of Aspies; a new lens to see my behavior through. That’s a perfect way of describing it. I was diagnosed with ADHD and sensory deficit disorder as a kid. From what I know that’s actually pretty common. Figuring out that I’m an Aspie was like all the lenses of a camera lining up just right to bring the picture into focus. Instead of being this hot mess that has all these things wrong with her it’s just this one thing that explains everything. Occam’s razor. However, I have been hesitant in the last two years after realizing I’m an Aspie to tell anyone. My immediate family knows and they are fantastic about it, but I don’t really want to tell my friends. I feel like I’ll come off as a jackass if I say I’m self-diagnosed. So I just haven’t bothered. My roommates freshmen year of college found out because I had a meltdown before finals and they were cool about it, but I’m really nervous to tell the friends I have known for years. I have a boyfriend now and I don’t want to keep it from him, but I don’t know how to tell him. Any suggestions?

    • I totally get this. It can feel weird to just up and disclose. Especially if it is to people you’ve known for a long time or someone you’re very close to but who doesn’t know. I would maybe try to come at it from a natural angle—like if you’re having a hard time doing something that comes from your Asperger’s explain it using your diagnosis. Or if you’re telling him about your special interest or something that is great about you because of your Asperger’s, use that to start the conversation. Does any of that make sense? I hope so. Good luck!!

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  75. I am on the spectrum also. Now a 54 y.o. mom. Diagnosed at 52. My son was diagnosed in kindergarten and is now 17. I did a home daycare and he seemed perfectly normal to me — but then I wasn’t normal. I knew in kindergarten. I couldn’t figure out what the heck the girls in the play kitchen were doing (imaginary play was beyond me – still is – kinda) – or when I drew private parts on my Barbie’s or dissected their legs to figure out why the knees “cracked” (they were taken away after that). I guess I was smart enough to recognize my differences and spent most of my childhood hiding – obsessing on little things I could hide. I have spent a very long life being alone – missing out on many activities I would have liked to enjoy if only they weren’t so over-whelming/stimulating… frightening.
    I am tired – and looking forward to all this being “done”. Just have to get my son to functional adulthood… then I’m done.

    • Hi Wendy. I wanted to reply to you to let you know that you are not alone in being so tired. It can be so very hard to want to participate in some things but knowing that it will be too hard to do it or if you do it, you will have to recover for days. But hang in there. I wish I had more words of encouragement. It would be so easy to say something like “maybe find something you like that is less overwhelming,” but so much harder to actually do—especially when everything else is so hard. But don’t give up. There are lots of us out here and we care about you.

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