Adult ASD: My Evolving Sense of Self

This is the final part in the “I Think I Might Be Autistic” series. 

In addition to the new set of questions that my diagnosis raised, it’s also forced me to think about my identity and how I want to own being autistic. I wrote a bit about identity very early on in this blog. At the time I challenged myself to revisit the subject in the future, after I’d had more time to educate myself and think about the labels I’ve been given.

In the past couple of months, I’ve been using autistic and aspie interchangeably to refer to myself. Not because the DSM-V will be eliminating Asperger’s but because it feels more comfortable. I’ve also been learning about the social model of disability, which says that disability is created by the way society is organized rather than by a person’s differences.

My previous concept of disability had centered on the medical model, which says that people are disabled by their differences, which need to be fixed. Because I was resistant to the idea of being seen as someone who is “less” or “defective” I was resistant to thinking of myself as disabled. The social model of disability has given me a much more positive way of thinking about disability. It looks at a person’s disability and asks what kind of supports that person needs, not what’s wrong with them.

The social model feels like a good fit for Autistic people. I don’t want to be fixed but there are some things that would make my life easier.

Learning to be Autistic

Since I’ve begun blogging, I’ve noticed that I have a constantly evolving sense of self. The more I write and read and talk with other people, the more my understanding of who I am shifts and solidifies.

Little by little, I’m learning what it means to be autistic.

You may notice that I generally use “small a” autistic rather than “capital A” Autistic in my writing. That’s intentional, not an oversight.

Autistic refers to Autistic people as a cultural group. For example, I consider my blog Autistic space–a safe space where Autistic people can gather to share information about how we experience the world. I make an effort to participate in Autistic advocacy events online, like the recent flashblogs. But I don’t feel ready yet to be an advocate in the sense that many other Autistic people are.

The funny thing is, I never thought about being advocate at all until recently. I started blogging as a way to process this huge new self-discovery. Writing has always been my primary way of processing. Big thing to process equals a need to write hundreds of thousands of words in response.

As I got involved in the online blogging community, I slowly began to realize that like it or not, I am an advocate. That’s something that I’ve come take very seriously. Words have consequences. We can lob them like rocks or wield them like a scalpel; we can use them to soothe or incite. Mostly I want to use them to understand and to promote acceptance–self-acceptance and acceptance of Autistic people in general.

I feel like I’m still learning to be autistic. This is personal for me right now. Perhaps this is my way of being an advocate–the constant dissecting and researching and writing and explaining and oversharing.

At some point I’d like to also feel comfortably Autistic, but for now, discovering my “small a” autistic self is an all-consuming process.

34 thoughts on “Adult ASD: My Evolving Sense of Self”

  1. This was a fabulous series . I have learned so much, about myself & my husband. Even if I’m not autistic, this has helped me with discovering my husband is definitely an Aspie. We are trying to live in an NT world and understand why we feel so different ! Thank you.

    1. After doing three Aspie tests & reading ‘Aspergirls’ by Rudy Simone & following your blog; I do think I might be autistic too!

      1. Congratulations? I never know what to say when people say they think they might be autistic, but what I always want to say is “Congratulations!” because it feels like something to celebrate. 🙂 I’m so glad you enjoyed the series and found it helpful. I learned a lot about myself in the process of writing it.

    1. It is weird, isn’t it? I guess in some way, while we been autistic all our lives, maybe we spent a lot of it trying to learn to be NT so there’s a bit of unlearning that needs to happen.

      Also, I like your icon. I can’t tell if it’s meant to be a set of cogs or a face with only eyes or both, which means I just keep starting at it. 😀

      1. Definitely. I am also finding that I am learning not to apologise for my behaviour so much and not to spend so long trying to do things in ways that feel unnatural.

        Haha, it is supposed to be me. I designed it as an icon for my website/blog, but I have yet to update my design. His name is oddcoglette and he is a little man with cogs for eyes.

        1. Good for you. I’m discovering that changing the way I see and relate to myself makes a huge difference, maybe moreso than anything to do with how I relate to others.

          A self portrait! That’s awesome. I like how surprised he looks. 🙂

  2. Another great post in the series. I’ve really learned a lot in reading through this whole series, as well as the rest of your blog. Slowly coming to terms with this world of “a’s” and it feels like the fog of life is finally starting to clear.

  3. “…there’s a bit of unlearning that needs to happen.”

    Your blog has been a hugely valuable and valued resource for me and for many others, so thank you!
    I was looking forward to this post. I’d like to know more but that is because I want to research and dissect other adult autistics experience. I feel like I need to strip it down to the bone, even to a molecular level to really begin to know and process my own experience in light of others’ experience.

    I have added the quote above because that seems to me to be a very pertinent part of the adult diagnosis – how do we unlearn the bits of ourselves that are not authentic, the places in our personalities or processing of our social selves that are faked; the covers we use to hide ourselves?

    And I like what you write about being an advocate. I have been thinking about this a lot lately as I am an artist and I could potentially add a non-typical autistic ‘voice’ to the community. For people who have the perception that adult autism is Sheldon from Big Bang Theory, or any maths-loving Star Trek watching uber-geek. Whereas I am a middle-aged, female, artist and mother – NOT what people expect. So being an advocate is something that I am pondering, in part because I know how much your advocacy has helped me and I am thankful for it.

    (BTW I love Star Trek, science, sci-fi and numbers too…shhh don’t tell!)

    1. The unlearning process is confusing for me too. I feel like I had to unlearn a lot about myself to get to where I was open to even considering that I might be autistic and then unlearn some more to truly see it in myself. Now that I’ve conclusively got a diagnosis, I have still more to unlearn as I keep dig down below all these layers of behaviors that I’ve learned so I could pass and protect myself and, yeah, it’s a lot.

      It’s exciting that you’re thinking about ways to add your voice to the community. We are such a diverse bunch and the more people see that, the more the stigma and stereotypes begin to fall away. I hope you find a way in which you’re comfortable being an advocate. My relationship with that role is still a very tentative and uneasy one but I’m working hard to grow into it.

      Also, I’ve been a Trek fan since TNG originally aired and love a lot of the standard geek things too, in spite of middle aged female momness. 🙂

  4. self-determined and loving it and I also cherish my daughter who has been “diagnosed”

  5. I completely relate and understand. I’ve been going through this process over the past year after realizing my son has ASD. Keep sharing. It educates and advocates.

  6. Thank you. I have loved reading your blog and feeling the identification with you and others on here. I am definitely learning to be autistic and yes also unlearning alot of old stuff too. It has been a huge celebration for me and I like that you describe it as that too. Also I really loved your kindred soul post and wanted to comment but the conversation had turned a bit technical and i felt out of my depth. The way your saw your dogs issues in an aspie light was touching and funny at the same time. My dog is the one thing I can cuddle endlessly and look into the eyes of when i talk to her. She is my “heartbeat at my feet”. Anyway thanks again for the info, the laughs and the sense of belonging x

    1. Thank you! I’m so glad you commented here and you’ve been enjoying the series and feeling like you can relate to folks here. It sounds like we’re in similar stages of our journeys. Getting to this point is such a huge relief. We should definitely be congratulating ourselves! 🙂

      Dogs are so special. I’ve thought about trying to get Emma qualified as an assistance dog so I could take her more places but I think it would be too stressful for her.

      Also, comment in any way you like! I often get into long geeky technical conversations in the comments, but I also love hearing from people that something made them smile or that there was some little thing that they really related to.

  7. I went through the sense of identity thing when I was diagnosed as an adult. At first, I read everything I could, then the beautiful thing happened that I was normal in the community of people like me. Welcome.

  8. I can really relate to what you are saying. I have been an advocate myself in the low-countries.
    It’s only because of me being an Aspie as well a lecturer, researcher and being trained as a coach/supervisor I set up my own practice and have developed an approach that seems to work for all sorts of different ways of thinking. I even give counseling to an NT/Aspie couple and to a a family in which a variety of diagnosis is withheld (or not) – different thinking, same approach.
    We probably have the same aspiration. Every time I read your stories I recognise a great deal.
    We might gave different means but both aim for giving ‘us’ Aspies a voice.
    I would love to exchange some thoughts on this with you. I’ll leave you my mail with this reply. Feel free to contact me anytime.

    Thanks for sharing your musings with the world. They really make a difference !

    1. It definitely sounds like we have common aims while having different ways of going about it. I started this blog with the mostly selfish intention of having a place to work through my thoughts post-diagnosis, but it’s become something else entirely and that’s been a nice surprise. I’m about to leave for a two-week trip overseas but I do have your email and will drop you a note when I return in May.

    2. I read everything now , in Nov 2016. No idea if this blog is still active. My situation is practically dead-ended. Too late to fix anything and live life. What was manageable before Isn’t anymore. But than you for writing what you wrote.

  9. Thank you so much for this. I’m sort of in the process of self-diagnosis and the biggest indicator that I have AS is I read experiences like your own and I’ve written/explained/assessed situations using the exact language you all have. I just sit here, in awe, saying to myself “That’s me. That’s what I do. I’m like that too. Wow.” Thank you so much for sharing and doing all this work – it helps immeasurably. 🙂

    1. You’re welcome – I’m glad you’ve found it helpful! I felt the same way when I first found blogs by autistic adults so it’s nice to be able to “return the favor” in a roundabout way. 🙂

  10. Thank you so much for this series. I’m currently in a 6 month process of getting my daughter diagnosed with aspergers. After reading Aspergers something clicked. I have done a lot of reading, talked with close coworkers, and my husband. So far it all points to Asperger’s for me. Your series further has helped to clarify things for me. Thanks for writing it.

    1. I’m so glad this series has helped you out and that I’ve been a small part of your journey. There is often a genetic component to Aspergers so it’s not surprising that both you and your daughter are on the spectrum. Best wishes on your self-discovery.

  11. All the comments appear to be old, but figured I would comment anyway. I recently began self diagnosis for aspergers in lieu of borderline personality disorder and bipolar, which is what I currently have. Aspergers makes a million times more sense to me. I had no idea what the testing was like! Like you, I want it to verify myself, but am terrified I won’t ”qualify” and I’ll feel left out of a community I passionately identify with. I’m 27 and female. Thanks for your posts.

    1. Both BPD and bipolar are common misdiagnoses in place of Aspergers, especially in women. I hope that you’re able to find a way to confirm your self-diagnosis or at least find some peace of mind. I know how unsettling and confusing it can be to find yourself in that place between “Wow, this sounds exactly right” and “but what if . . .”

      1. Thanks. Your series on the diagnostic process was so helpful! I will continue to investigate. I’m glad you said that self-diagnosis can be accepted in the community when researched appropriately. I always identified with the asperger’s characters in movies and books but it never crossed my mind that I might be one until I looked up the symptoms. I have 60-70% of the symptoms listed in that female dominant chart posted, took a bunch of quizzes that said “likely”. But you’re exactly right that I’m scared I’m “not aspie enough” and then I’m back to square one that I’m just abnormal for no reason.

  12. Thank you for putting together this beautiful series and sharing it with all of us. I discovered these posts six months ago while I was in the midst of a multi-day neuropsychiatric evaluation to assess for inattentive ADHD. This series was not only highly informative at every stage of the process, but it also proved to be my greatest source of comfort and catharsis during that difficult time. To elaborate, I took my evaluation in secret, and against the better judgment of my family. Where they could not emotionally support me, your series put my own feelings into words, assuaged my fears, provided me with practical advice for the months following the assessment, and — most importantly — validated my entire experience. I still refer to it from time to time for tips and reminders on how to navigate my new ADHD diagnosis.

    Bravo for a beautiful series that addresses the needs of the autistic community AND their neurodivergent cousins!

  13. Thank you!
    Just found out that I am Autistic. Self diagnosed, but after many “tests” and lots of research I am positive that I am. This series has been an amazing source of information and confirmation.
    I’m currently at the “okay, now what?” phase, and your series has given me direction.
    Thank you again!

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