Diagnosis Story 23: People need kindness and gentleness – not just labels

aspergersfrominside Diagnosis Stories,

Today’s story comes from Gabriela in Romania. Hers is not a sad story. Despite only recently discovering she’s on the spectrum she has always felt supported and accepted.

I played sports, joined clubs, went to parties and concerts, was part of groups, had an active social life, I traveled the world and experienced its positive vibes. I had a few quirks and sensitivities, but no one seemed to mind.

Gabriela-asp.jpg
This picture is about the inner world, which is much richer than the outside one, about dreaming with your eyes open and seeing portals to so many worlds.

Gabriela’s Story:

My path has been a game, adventure mode on, self-exploratory to the core.

The first level started with a loving family, and a friendly accepting community, who took me as a whole. I was not bullied as a child, marginalized, nor excluded. I played sports, joined clubs, went to parties and concerts, was part of groups, had an active social life, I traveled the world and experienced its positive vibes. I had a few quirks and sensitivities, but no one seemed to mind. I grew quite independent, self-confident, and curious about humanity.

I’m 35 and am now working in IT. That said, I recently found out I’m on the spectrum. It happened by chance, not by intent, and I’m still figuring out things slowly, fragmenting to a billion thoughts.

I was researching for a friend whose niece is on the spectrum, and while watching videos of Aspie school girls, a lot of it seemed to hit home: what they’d said, attitude, motivation, gestures, their approach to things, thoughts structure. So much of that resembled my own at that age. Naturally, I did what any sensible rational adult would do in this day and age: youtubed & googled.

I began reading in depth about girls on the spectrum. I went over professional papers and personal stories. I took tests, made lists, and ended up with some sort of a user manual of myself, which, for those who would like to try it, is an exhausting, fun and revealing exercise.

I felt abundantly ignorant for not knowing how much the topic had expanded, and amazed by how diverse it all is. There’s a lot on classical autism – less applicable for me; and another lot of applicable info which I struggled with due to being presented too broadly. On top of that, psychology papers seem to be written by people who observed from an external standpoint, without having a genuine inside understanding of the situation. For me that made it confusing, abstract and distant.

What helped clarify were the testimonials of people on the Spectrum. They seemed to put into words exactly how I was processing things, what and how I felt, sometimes using the same words or phrases, and they even knew weird I experienced, that no one else knew about. They also normalized the frustrations, other people’s denial, the confusion, the stunning moment of confirmation, the relief. They got it. They made sense. They were there.

Going now over memories and facts – it seems so obvious and clear, scattering any sign of doubt. I thought whether to get an official diagnostic, and what that would bring to my life, both positive and negative. Being a grown up, who’s made it so far in a bizarro world, with learning how to function sort of well in it, I decided to not go for the extra validation. Speaking strictly for me, I don’t feel a formal diagnosis would add value to my life or help in any way. I understand though people who go for it, either for pragmatic reasons, for wanting to stop the “how can you be on the spectrum?” frustration, or simply for getting an answer to a continuous thought. And I do encourage people to do what they feel it’s best for them.

I really don’t know whether finding out about it from an early age would have made a difference. I felt accepted and supported, without thinking there’s something wrong with me. I took pride in my cool features and regarded them as strengths.

I learnt what works for me, what doesn’t, communicational & emotional skills, and coping techniques. I don’t know if it took longer or if it would have taken this long anyway. For me it was more of a self-discovery process of trying out things versus being guided by a professional.

I am immensely grateful and thankful to everyone who created and shared content about this online.

For a while, I went with being bipolar, which gave a base, yet left some things unexplained. Being on the spectrum makes sense altogether. It feels as if for the 1st time ever all the pieces of the puzzle fit where they are meant to. Understanding it eased up my daily efforts on dealing with emotions or processes that were sort of outside of my control, yet I was still attempting to manage tightly, such as: anxiety, that feeling of standing out, the automatic mimicry, super productivity rush followed by super crush etc. It came with a subtle sense of relief and appreciation, looking back at all the hard work done on acquiring those skills/methods/techniques. Overall, it brought extra steps towards understanding myself, and extra love towards my family and friends.

Discovering the community around this has felt soothing, comforting, and connecting, all to a level I was not expecting. I still address people as “humans” and find them to be curiously strange creatures with strange habits. I still feel very much like a being from another planet, dropped on Earth, continuously needing to upgrade my skill pack to function, using a different operating system than others around. But at least now I know there’s more of us. Small army. And that’s a very nice feeling. J

I watched most of Paul’s videos and smiled widely each time he described spot on coherently how I function, without me having to strive to explain any of it, as if having a spy camera inside my mind. Amazing. Stunningly amazing. I relate to his videos to such a high extent in regards to inner processes/thoughts/sensations/the very core structure of my being.

It’s been a long adventurous path, yet I’m a newbie at the spectrum thing. I’m still thinking things over, not knowing for sure how I should relate to them or how this would evolve in a few years. I don’t see this as a disorder and I find approaching it in this way bizarre, rude, similar to the world’s unkindness, not sustainable and perhaps damaging on the long term. Everyone has strong points, and things to work on, no matter if they’re on the spectrum or not. I don’t see being on the spectrum a disability. I see it as a pack of features. Quite cool amazing features, to be honest.

Maybe I could do with less of extra-sensitivity to meanness, and definitely I could do with less of the anxiety, but I guess it’s a whole package deal.

People come in different shapes, colours, features – some of those shapes/colours/features have names, others don’t. It just so happens that this one has a name – a beautifully coloured, delicately textured, softly shivering, musical name, because I’m synesthetic and that’s how I perceive it. Maybe it’s me being new at this, but I think people need kindness, love and gentleness more than they need labels.

I don’t mind being weird. I quite like it, and I would not trade off my inner world and sensations. I am more than a name, a diagnostic, a perspective of describing myself; there are angles and layers, tones and shades, a solid self-transforming universe, quietly waiting for people to broaden their eyes and hearts and connect.

Thanks for being kind and supportive,

And thanks for reading through.

p.s.:

I added a few links for women out there who are confused about this.

I’m sorry you have to go through this. It is going to get better. #sendingyousoothingvibes

7 thoughts on “Diagnosis Story 23: People need kindness and gentleness – not just labels”

  1. This post left me feeling very uncomfortable. I’m not sure how to say it without being a bad person. If you self diagnose and admit you’ve effortlessly lived a comparably easy, normal, adventure packed life surrounded by people who loved and supported you…how are an aspie? I get if you want to be part of a community but the Aspie community is not the kind of group where you join just to join. I also get if you have lots in common with Aspies or feel deeply compelled to support the Aspie community but why say you are one if you clearly aren’t? And I have to say you clearly aren’t.

    Like

    Reply

    • So this is a pretty old comment that nobody replied to, I find it surprising and I would like to leave a comment just in case someone like me lands here, so that this person knows there really are more of us with this seemingly perfect background story.
      Or you know, so that somebody can support this person’s opinion but with a bit better arguments than “you clearly aren’t”.
      (If you don’t have the time for all of it, you can just skip to the last paragraph)

      First of all I want to say I’m only at the beginning of my research about myself. But I already feel like I can really identify with Asperger’s. Same as Gabriela, I watched a lot of Paul’s videos and I felt same as her. And then now I read her story and it was exactly as if I was reading my own story, so accurate that it was even kind of creepy.

      So let’s start with the explanation why “we clearly are” and in our case it has nothing to do with not being accepted by friends. Although we had a good childhood, let’s call it that, it does’t mean we can’t identify with Asperger’s syndrome. I too had friends growing up, wasn’t really an outsider. I mean I was very different from the other kids, that I can’t deny, but it didn’t lead to me not having friends. Even in my teens I had no major problems with friends. I was weird but I found quite a few friends who didn’t care about it and who liked me despite that. And I also wasn’t friends with them just because they wanted to be friends with me. No, I could really choose who I wanted to be friends with and I chose them. None of them were even closely like me but they were really good friends. Very often they found my behaviour funny, but good funny. Like I would do or say stuff that they would never do in a million years, they thought it was weird, funny, brave, whatever, and for me it was just a normal reaction. But yeah, I was still successful in this aspect, despite not understanding a lot about social relationships and communication.

      And I also had loving parents. I am really sorry for everybody who had bad experiences with family and friends, and I am very gratefull to have such a supporting family no matter what (I really am, I’m not just saying that, believe me), but really it kind of hurts to hear that I should have turned out differently because of that instead of identifying with the Asperger’s syndrome. “…you’ve effortlessly lived a comparably easy, normal, adventure packed life surrounded by people who loved and supported you…how are an aspie?” -> that’s where I’m getting this from. So what your comment is kind of telling me is that it’s my fault because I had it all and still managed to blow it up.
      Seemingly perfect life, that’s also what I myself was thinking so I really can’t blame you for thinking of it like that, I guess. I was really convinced that everything is alright and I had no reason to be worried about myself, despite the fact I’m a little weird. I knew about the being kind of weird part, but that was like, you know, who cares.

      But now I would like you to tell me how one 23-year-old in this perfect situation can have a burnout, out of blue? Suddenly strong anxiety attacks on a daily basis etc. I wouldn’t say it’s a normal reaction.
      I’m a software developer and I really like my job. I don’t have big responsibilities yet and nobody is putting pressure on me at work so in my opinion that couldn’t have caused it.

      Same as Gabriela, I am guilty of not researching about things enough until it hits me. So after these frightening things started to happen to my body I was like what is this, I have to go see a doctor. And I did and that is when I found out I was having anxiety attacks. Had no idea what those are before, but as I was talking to the doctor and then also started reading stuff online I immediately identified with it. It immediately became clear.

      There was only one time before that that I looked at my whole past with different eyes, and that was when I realized I liked girls when I was 16. So this is off topic but just to compare. You know, you like girls and that is why you didn’t feel butterflies in yout stomach while kissing boys and didn’t want to do other stuff with boys. Then with anxiety I was like, that is why you have this weird feeling when you have to enter the mall or meet with a bunch of different people, or you are supposed to have lunch with your colleagues but you just can’t manage to step into that kitchen but always go out even though now you have no idea what are you going to do outside because the whole point of getting up from the computer was to already complete this mission of eating the damn lunch with people.

      Anyways, the reason why I explained my reactions to my past two realizations was because my reaction while researching Asperger’s syndrome was the same. I just saw myself in it. For instance this lunch situation also became much more clear. I started this research because a Netflix series motivated me to get to know more about autism so I can understand my little niece better. We get along great, so I actually didn’t need any “strategies” for her, but wanted to be able to explain things in detail to other members of the family because sometimes they would do things that I find stupid to be honest, like calling her name over and over and over again, asking her why she doesn’t want to talk at all (she is 4) etc. So as you can probably assume, soon I started doing research on me too, and not just her.

      So to conclude, I’m going to explain to you why I think we should be allowed to identify with Asperger’s (as I said for myself, not really done with research but pretty sure, like over 90% sure). Although we have family to talk to at any time, friends to talk to at any time, these people love us but don’t really get us. I have to tell my mom who cares endlessly about me and out of love and care says stuff like: “But you HAVE TO change, otherwise the world is gonna crush you”. For years. You know, she doesn’t see me like an autist because I don’t appear so on the outside so she (and other people too) just assumes I can do things the normal way. And my answer was always “I’m trying, I’m trying, it’s hard”. Until recently, when my answer was “Okay now it’s enough, I can’t and that should be fine damn it. Sorry but I give up.”. And then not long after that, perfect timing, I started this research. Now one day I can go to my mom and tell her look mom, I really can’t change and it’s called Asperger’s syndrome. You know? Dear loving girlfriend, I am not angry with you right now, I don’t know why it sounds like that and it’s called Asperger’s syndrome. Dear friend, I am not trying to be mean to you by directly and honestly saying something to you, I don’t judge you even if it sounds like that and it’s called Asperger’s syndrome. Otherwise people don’t take the explanations seriously and may go away from you out of stupid misunderstanding.

      Also, if anybody read the whole story and thinks it really isn’t the Asperger’s, feel free to let me know what it could be, really. I am going to look for help from a doctor, this time another kind of doctor, but I think your opinions as people who are actually experiencing this are may be even more helpful.

      Thank you!

      Like

      Reply

  2. This is a really lovely story of someone’s life and realization of the spectrum.. Thank you – I’m also a woman on the spectrum.
    I’ve just discovered this at the grand age of 45.

    I appreciate Paul’s videos so much. I feel understood finally when I hear or read about these experiences.

    Liked by 1 person

    Reply

  3. I, as well, was edified and even comforted, by this woman’s words. Her articulation, her synthesis of language… reflect her inner Aspie world and describe me growing up, except I was bullied and my family of origin frought with dysfunction and PTSD pain. I believe my Aspberger symptoms may have onset with frontal lobe pediatric TBI from a coma inflicted by a raging bio-father when I was six months old. But my brother and his daughter are on the spectrum without having sustained brain injury in their developmental years. So… who knows?
    I burst out with a spontaneous giggle when I read about calling others “humans”. As long as I can recall, I have identified people as “those human beings”… “I just can’t get them, and most of the time, could rather do without them!” Yet, it’s ironic. I love community and am passionate about serving others. My scope of focus as been studying and enjoying humans when I feel safe and have a sense of being accepted. I just require a time of debriefing, respite, reflection and psychological recovery after human drama, intensity and interaction, when my life collides with others in a grand display of “what just happened?”
    I recently discovered at 57 that I have many Aspien traits. I scored a 36 on the Cambridge, UK, A. Q. Test. I am not seeking a diagnosis… just learning how to be comfortable in my own skin, for “I am human” too. 😀

    Liked by 1 person

    Reply

  4. Welcome to the Community, an awesome story, thanks for sharing.
    I’m also a female on the spectrum, also with no official diagnosis.
    We are everywhere, and we are awesome 🙂

    Like

    Reply

  6. Thanks for the post, I am too am just starting to identify as an aspie. I identify a lot (but not entirely, although perhaps more in other areas) with Paul’s videos. I scored a 35 on a screening test and I am trying to figure out if a diagnosis is worth the money. Thanks for your input

    Like

    Reply

Leave a reply to gingercat2016 Cancel reply