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

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.

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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

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I now can truly appreciate that I am not less capable, I just have different capabilities.

Kate’s Story:

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“I did what any self-respecting adult would have done: went online and did a bunch of tests… I concluded that the tests were rigged and the Swedes were strange.”
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I usually think of people in animal terms, which makes it easier to recognize and remember them. I’ve always identified with sparrows. This one is from my time in Sweden.

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Me and my twin brother – soon after we were born

Allison’s Story:

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Me and my friend Sharon (I’m on the left!)

Catriona’s Story:

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Diagnosis Story 16: Something More or Something Missing

This week’s story comes from Tess in Tasmania. She discovered her own autism with the help of her daughter and is now an advocate for the neurodiversity movement. Her blog is called Neurodiversity Goddess, which contains content specifically relating to autistic females and their family and friends.

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“When my daughter was having her autism questionnaires completed, it painted a picture of the little girl that I also was.”

Tess’ Diagnosis Story:

I am a late diagnosed 42 year old woman from the far north west of Tasmania, Australia. Throughout my whole life I felt Continue reading