Adult ASD: Moving Forward After Diagnosis

This is part 12 in the “I Think I Might Be Autistic” series.

The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?

Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.

It also allows me to say this: if you think you’re an aspie or autistic–if you’ve done the research and talked to other people on the spectrum and see yourself in them, if you’ve identified a long list of autistic traits in yourself and come to the conclusion that ASD describes your particular set of neurological differences–then you are very likely correct. With or without an official-looking paper diagnosis, I think we are our own best judges of our neurology.

So, yes, getting diagnosed was worth the time, effort and expense for me. Yes, I’m fortunate to be in a position to have access to the resources I needed to pursue it. Yes, I also believe that self-diagnosis can be valid.

One of the reasons I’ve written in detail about the process is because I know that not everyone can afford or has access to a diagnosis. Not everyone is ready to pursue getting diagnosed. Not everyone has the executive function or the emotional resources to run the gauntlet of medical and mental health providers. Not everyone needs or wants a formal diagnosis.

But I think everyone who has bothered to read 11,000+ words of this series probably shares my interest in self-discovery. We know that we’re different and we want to know why and how and what that means. I spent less than 8 hours with the people who diagnosed me, but I’ve spent hundreds and hundreds of hours researching and writing about being autistic. That, ultimately, is what matters most to me.

My diagnosis, though it allowed me to put one set of questions to bed, has raised plenty of others.

  • Are there things in my life that I want to change?

  • Should I go for therapy?

  • Who should I tell?

  • How?

  • What does it mean to be Autistic?

These aren’t questions I can answer conclusively, even today.

Time to Change?

Once the newness of the diagnosis began to wear off, I was faced with the question of what to do with this new knowledge. I have a 10-page report from the neuropsychologist listing my cognitive strengths and weaknesses. I’ve become more familiar with and conscious of the areas where I struggle.

I’ve been told, not for the first time, that therapy would be beneficial. It’s an idea that I keep kicking to the back of the line, intent instead on rigorous self-examination. Like everything else I write about here, that’s my personal choice and not necessarily one that’s going to be right for anyone else. I’m not even sure if it’s entirely right for me.

Slowly, I’ve been working at making specific changes. I’ve written about being more flexible, allowing myself to stim more, trying to reduce my insomnia and nightmares, learning to translate from aspie to NT and back, and exploring my emotions.

I’ve also written about the things I’ve decided need accepting rather than changing: my lack of empathy, my anxiety, my tactile defensiveness, my love of being alone. My litmus test for change vs. acceptance is simple: is the cost of changing this thing higher than the benefit I’ll gain from the change?

Some changes require little more than mindfulness or occasional reminders; other changes require me to move out of my comfort zone and face some hard truths. The outcome–or at least the goal–is that I struggle less with some aspect of my life. Those are the good changes, the ones I’m eager to make.

Other changes feel pointless to me. These are often the changes that would make other people more comfortable by making me seem less odd. With all of the things I could be working on, I don’t see the point of investing my limited energy in those types of changes.

In fact, since getting diagnosed, I’ve become more echolalic, more stimmy, less conscious of censoring myself. I’ve become gentler and more compassionate with myself. I push myself less; cut myself slack where I wouldn’t have before. Not because I see myself as disabled, but because I see myself as a person in need of care.

I never really gave much thought to self-care before. I often demanded a level of performance and perfection from myself that I wouldn’t have expected from another person. I was so busy pushing myself to be better, to get things right, that I often neglected to be kind to myself.<

Perhaps that’s the biggest change I’ve made so far: I’ve resolved to be kind to myself.

Obviously, these are very personal decisions. The constellation of things that I choose to work on changing is unique to me. It continues to shift and grow. There are days when I think, “screw this, why should I change anything?” There are days when I think it would be nice to be “normal” for a day, to not have to struggle so much with simple things.

Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.

That’s the best change of all.

Up Next: Disclosure

36 thoughts on “Adult ASD: Moving Forward After Diagnosis”

  1. This is what I am trying so hard to do at the moment. To move forward while being kind to myself. The good news is I think I have finally found a therapist I’m comfortable with and who ‘gets’ it. Great post.

  2. Hello, Musings

    I’ve been asked to write a short version of my own autism story. In gathering information for this, I came across my Aspie-Quiz results and will probably take it again just for curiosity’s sake.

    The diagram produced at the end of the quiz has some pretty clear markers for measurement, except for Hunting. Talent Compulsive Social Communication Hunting ?? Perception

    Just wondering if you’ve seen these markers defined anywhere with relation to the quiz.

    Look forward to hearing from you.

    Here were my results back in 2010: Your Aspie score: 157 of 200 Your neurotypical (non-autistic) score: 70 of 200 You are very likely an Aspie

    Detailed results suitable for printing (PDF) (The file is only retained for one hour. Download it if you want to keep it.)

    My Aspie Heart

    Aspie markers: Define: Talent, Compulsive, Social, Communication, Hunting, Perception

  3. I agree with much of what you have written (as usual) but at the moment I have to say that I wish I never knew I was on the spectrum. Yes, it has made aspects of my life much easier for me to cope with (like wearing ear-plugs in public) and yes, I cut myself some slack and take more time to be alone for instance. But otherwise it has been a disaster.

    I am WAY more self-conscious and am constantly watching my words and behaviour around other people, so I feel like I can never relax around other people now. It has had a disastrous affect on the people who know me. My marriage is as close to breaking as it has ever been in 20 years. My relationship with my daughter has changed and I think that some of my current friends and acquaintances are either struggling with this new me, or have decided that I am ‘disabled’ and therefore ‘a problem.’

    I wish I could turn back time and never have known about Asperger’s and me.
    Then I could just have carried on being that odd woman who is annoyingly emotional sometimes rather than this huge new thing that people around me don’t want or don’t know how to deal with.

    I thought that people would be amazed that I had coped so well in my life despite being autistic. I thought that people would be understanding and encouraging. I thought that instead of being a person who has been told that she is difficult all of her life, people would be like, “my god, we didn’t realise, wow you are amazing!” I thought people would be kinder to me and not so annoyed by me all the time. None of that happened. No-one has ever said that I have done well to cope so successfully as an autistic person. No one has ever sat down and asked me what it is like in my head. People don’t want to deal with it or me.

    My advice to anyone who thinks they might have Asperger’s is to get some feedback from a counsellor first about how other people in your life could be likely to cope with the new you. Really try and understand how it is going to be for THEM, first, and only when you have that knowledge think about how it will change your life. Because we live in an NT world folks and they are in the majority and whether you like it or not you are really going to have to find a way of living in their world. If you CAN pass, then DO pass and try to find alternative ways of quietly supporting your own autistic needs (work alone/in small teams, take plenty of alone time). I would strongly advise you not to walk down the path of ‘disability’ unless there really is no other way for you to live. You won’t be the next Temple Grandin. People won’t want to interview you. Your own family will likely not even want to or be able to cope with it. You will be the weird person you always were, but now you will be a disabled person, a changed person and a problem that your NT friends and family may not have a clue how to deal with.

    1. i’m so sorry you’ve gotten such a lack of acceptance and understanding at every turn. Next week’s post in this series is about disclosure and a good part of what I wrote is about how telling others about being autistic can go wrong. It changes everything and often not for the better. In fact, so much of what you’ve said here, especially in your last paragraph, is exactly what I support in terms of disclosure. Talk to others for advice before disclosing. Don’t share at work unless you have to. Don’t expect people to be as happy about the news as you are because most people have no idea what to do with it. And people will treat you differently in many if not most cases. Worst of all, you can’t take it back.

      So sadly, what you’ve written here is what so many people experience. I’m fortunate that my husband and daughter have been so accepting and that my daughter. Beyond them, I haven’t told family because I don’t know what to expect and that’s scary.

      I want to close this by saying that I respect and admire you for being so honest and for your strength. It’s not easy to be “out” and it’s not easy to face what that means, especially when you have such a total lack of support. I also want to say that your comments are always so encouraging and spot on and I look forward to reading them and I’m glad you found my blog because you make it a better place.

      1. The upside of being honest and upfront with your aspie side i find. Is when I notice how some people take the newfound information either be it positive or otherwise. It tells you at once if this workwise is a place for you or not. Sometimes though i just wish i had broken both my feet instead my mind being so odd. I can’t excpect people to understand me if I myself struggle with it also. That i find has helped me even though i feel im standing still.

    2. Oh you poor love, and I mean that because I know exactly how you feel. There’s something about being an aspie that people would really rather completely ignore what you do, the small miracles, feats and achievements that we pull off –it’s weird and hurtful and I’ve been quite hurt by people ignoring what I do. I don’t think them knowing I had asperger’s would have made any difference to how they responded to what I did and it wouldn’t have made much of a difference to how I reacted to their lack of response–but at least I know I’m now not alone in this experience.

      Before I’d even considered or heard much about Aspergers I thought that perhaps people must feel that if they paid me the slightest compliment or acknowledged what I did they would simply be feeding my ego and clearly I was quite bright and self-contained so why should they encourage me? Lately I’ve just been wanting acknowledgement, not praise, not ego stroking just effing acknowledgement but heading down this painful cul de sac gets me nowhere. I know what you mean too about carrying on in a state of blissful ignorance without a diagnosis whether made by self or professionals, and while my paranoid self could have risen up in full flight at this revelation of my ‘headspace’, I suppressed it with everything I had (my faith) because this is a danger too lonely to go to. OTOH I am glad to have found a whole bunch of people who are similarly weird, or similarly wired. I think aspie’s have the ‘truth’ to make an enormous change in the world, and for those of us who’ve spent the majority of our lives struggling through a pretty fucked up NT world wondering why we didn’t fit in so well, we are in, if we can get our head out of our arse, a uniquely powerful position to point out a few fatal flaws in the way this planet, it’s economies and it’s society is run.

      Just in the last couple of days a friend of mine responded to my self-diagnosis first with a sort of arrogant scepticism a then by sending me a list of asperger traits and her interpretation of them in me. It was sublimely callous and unfeeling. I find that a lot of people say the most outrageous things to me that would crucify a lesser mortal! I called her on it and she misquoted something she’d read about asperger’s saying that people on the spectrum were often shocked to hear how other’s perceive them. Yeah, well that’s a two way street honey and if I told you how I perceived you, you’d probably be shocked too. And she was. So yeah, win a few lose a few.

      1. Your friend’s reaction is precisely why I have always wondered who celebrates diversity more: the majority or the minority?

      2. Anyway I have found that people can deal with shock by denying what we say or worse, criticizing it. Fortunately the people I trusted enough to tell denied I could be autistic at first, but given some time, were ultimately accepting of it. And they did warn me that other people might not take my self diagnosis as well.

    3. liberatedape, it sucks that this is happening to you, that there’s no acknowledgement of what you’ve achieved in spite of your diagnosis. When I outed myself as a suspected autistic to someone close to me, he said it wasn’t possible. It’s not the worst thing anyone could have said, by far, but he had this notion of autistics as people who can’t do anything, and we all know that this is not always the case. I think that is what’s going on with your family, friends and acquaintances. Some people may need time to process this information, because they’re seeing you in a new light, and others, well…they might not be able to handle it. I definitely agree, though, that anyone considering “outing” themselves needs to really consider any negative impact. Still, I really admire you for your courage to tell people about being on the spectrum.

      Just remember, we’re here for you, even if we’re only online! ๐Ÿ˜€

  4. Oh and thank you very much for writing on this. You’re very brave. (aspiemusing). I think the hoary old chestnut of not giving a flying fig what people think is particularly pertinent to us.

  5. Thank you very much for all your very supportive comments, It is really nice to read what is written here and I think I will re-read them several times whenever I feel I need some blog-love! (And and thank you Musings for your blog!)

  6. I’m almost scared to try and pursue a diagnosis, because if they say “you don’t have Asperger’s” then that’s one more thing taken away from me. I finally have an explanation for why I am how I am and the thought of it definitively being taken away from me is frightening.

    1. This was my biggest fear in pursuing a diagnosis. Honestly, if you’re pretty much convinced that you’re on the spectrum, you probably are. Even if you at times feel like it might be “all in your head” or something like that.

    2. I feel exactly the same but I have taken the plunge. I am awaiting a date for the full assessment. I just feel I need to know.

  7. I have recently come to the conclusion that I ahve aspergers. reading David Finch’s, as well as others and numerous hours spent reading up on it, it explained so much about myself and why I do certain things.
    I shared this with a few close friends, which was met with a ” but you arent quiet” or ” I dont think so, you arent like that ONE person I know of who has aspergers”. how do you deal with that?

    1. This happens a lot. There is some discussion about how people handle it in the comments on the next part in this series (disclosure), but I’ll sum it up here. If you’re up for it, you can educate people a little by mentioning that ASD is a spectrum and there are a wide range of variations in how people “present” with it. Also that ASD isn’t just about being “shy” or quiet or awkward or whatever stereotype they have in mind. Many people don’t realize that sensory sensitivities play a big part, as do communication deficits and motor skill deficits.

      You could also provide them with one or more of the symptom lists found online that basically summarize adult ASD traits in condensed format (I linked to them in the self-diagnosis post in this series). This is what I did for my husband and daughter, who were both skeptical at first. The more they learned about Asperger’s the more they saw it in me and eventually they started offering examples of my behavior that matched up with the lists.

      There are a lot of negative and narrow stereotypes about ASD and Asperger’s. It’s kind of a chore to have to keep explaining to people, but a little education can go a long way.

  8. It has been 4 weeks since my diagnosis (at age 48). For me diagnosis has been positive. My wife said nothing had changed, my manager at work said dont take it the wrong way but I am not surprised. Telling my parents was trickier but went ok, my wife helped my managing the emotional side of the conversation that I just dont get.

    Now I have a diagnosis I can be gentler on myself. There are some things at work I no longer do as I am just not equipped for them, fortunately my role involves getting stuff done and not playing office politics (whatever that is). This year I will be relaxed about my customary non attendance at the office christmas party – its just not for me.

    The big surprise in getting a diagnosis was how much it gave me to think about. I have a framework and rules for understanding the world and now one of the key assumptions (that I am like everyone else) is incorrect. The mix of experience and information in your blog has helped me with this, thank you.

    1. Congratulations on your diagnosis! It’s brave of you to have told everyone so quickly. I totally understand how difficult it can be to tell parents, regardless of your age. Having your wife along as support sounds like it was very helpful. One of the key recommendations I’ve seen for disclosure is inviting a support person along for the difficult conversations.

      I know exactly what you mean about diagnosis allowing your to kinder to yourself and to have a framework for understanding. I felt exactly the same way. It’s been a huge relief.

  9. I really enjoyed reading the series. I am at this point now, trying to decide if should pursue a diagnosis- I have diligently self-diagnosed and in true aspie fashion did it with gusto, lol. Everything in my confusing life clicked into place. But, as you said, there is that fear “what if its all in my head, what if I’m wrong?” I too dislike grey areas and want to know “for sure”. Also, recently I reached out to a small page as self-diagnosed and was told in no uncertain terms that I wasn’t welcome there as such. I hate to be seen as a poser- it seems so trivial, but yet, isn’t to me.
    On the other hand, I fear doctors. I get all awkward and intimidated (when talking about myself, with my kids I’m asked if I’m in the medical field- blows my mind!). I worry it’ll be a waste of time, that I”ll be told “nope, not autistic at all”. I also worry if an official diagnosis might negatively impact me- as a parent or a future employee… So thanks- you’ve given me a lot to think about! ๐Ÿ˜€ what to do, what to do, lol

    1. That’s basically the most important thing that my diagnosis has given me: the confirmation that I’m not imagining things or being a huge drama queen about it. It was and still is incredibly hard to convince people that the diagnosis fits me, though. And it does mean annoying stuff like having to disclose if I ever want to get my driving license (people with ASD here need an extra medical to prove that they’re fit to participate in traffic). So that’s the downside. But for what it’s worth… I think people like you, who do all that work to self-diagnose, are incredibly courageous. It takes a lot of courage to look that deep inside yourself, to look at your interactions with others, and the things you’ve struggled with since as far back as you can remember, and then talk about it with others. Doesn’t matter to me whether that is self-diagnosed, officially diagnosed, or diagnosed in the course of some other therapy. It’s courageous and awesome.

    2. It’s a complex question. I considered whether having a diagnosis might be a hindrance and there are definitely times when it could be, especially in official situations like work or parental rights. In the end I decided that for me, it was the right choice but it’s a very personal choice. I understand why people decide not to get an official diagnosis too.

      I’m sorry you ran into bias against self-diagnosis. That seems like a very close minded view to me. If we didn’t self-diagnose to some degree (with anything, not just autism) how would we know to pursue a formal diagnosis. People self-diagnose all the time, then show up at their doctor’s office and say “I think I have _______” and get a doctor’s opinion on it. It seems like a pretty natural course of action but for some reason when it has to do with our brain, it’s suddenly invalid. That confuses me.

      Whatever you decide to do, keep in mind that there’s no rush. When I finally decided to seek out a diagnosis, it was because I was feeling about 75% ready and didn’t think I was going to get any more ready than that. ๐Ÿ™‚

  10. Thank you both! Autisticook you are so sweet ๐Ÿ™‚ I think I did feel so relieved and like I unlocked a huge puzzle when I self-diagnosed. Being told it isn’t “right” kind of tripped me up and planted not doubt, but a need to “prove it”. You are right though, there is no rush. Self-awareness is most of the battle, knowing why I had all the issues I did in my youth. I’m pretty well now, since I do have this immense self-understanding. I will go slow. My husband sees a psychiatrist which he does like I might bounce the idea off him and even not go all the way to an official diagnosis but just a professional opinion so to speak. My faith in “professionals” is shaky though…
    Thank you both again! I’m sure you’ll see me again as I embark on this quest of self-discovery. I have started journaling on a blog which I’m not promoting (yet) sorting my memories and such. It is very helpful. I might publish it one day ๐Ÿ™‚

  11. Dear Liberatedape ….i like your name.
    I am self diagnosed … i arrived at this site after I took some on-line tests, which I took after a few very unexpected clues were curious to me in a couple of movies … all of the Aspergers discovery was over a year in culmination – but my entire life was one of ongoing confusion and questions … I was SO relieved upon total realization that i was simply gifted mentally with a unique way of thinking, and tho not in the majority of other brain-patterns on the planet, am part of the wonderful world of people who are learning to, or have learned to, or will learn to thrive with Aspergers – however, like you I was dismayed by the response from those I shared with – which was only my two daughters, my closest sister-in-law, and my bible teacher/best friend. (my parents passed away over 12 years ago)

    But these 4 people I told are the very
    people who ALWAYS comment on my behaviours, and how I think, and how weird I am, AND/OR reprimand me for things I say do etc, etc, etc.

    I thought they would ALL be like OOOH! NOW I get it –
    That WAS illogical to expect … bc upon further study, I like you, discovered theyre mostly all NT and lack the ability to process facts & data and come to logical conclusions.
    Apparently, most people on the planet thrive on doubt, ambiguity, and avoiding facts.
    I know it SOUNDS condescending, but I’m just being a realist when I say, as much as I want people to accept my mental capacity or lack thereof, I must accept the limitations of NTs as well.

    Also, I am convinced NOTHING IS IMPOSSIBLE, for myself first, and everyone else…
    I’ve come to believe my own little personal mission is to:
    1. Show empathy for inabilities in NTs
    One must learn it to show it guenuinely – NOT pity … as I have done, or frustration as I have tried to mask.
    2. Find creative ways to share my imagination with those who may not be as imaginative or think as extensively
    3. Learn not to be condescending

    Liberatedape, as you think more about your life and your ‘weirdess’ I think you will come to embrace the MANY facets of yourself as gifts … We are very uniquely gifted in many ways, and we have many character qualities that set us apart from ‘average’ or below average. We are above average.
    I am not an elitist or an egotist.
    There is no reason not to know who and what you are, where you are strongest, where you can improve, where you just accept, relax, and love yourself.

    I wish you all the best on your aspie journey.

  12. Of all the books and websites and blogs and… THIS hits home for me (and, I’m sure, for many like me) than any other source/resource I’ve come across. I see you get this feedback often, but I don’t believe we can thank you enough for—not just putting YOURSELF out here—but putting us ALL out here. ๐Ÿ™‚

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