On the spectrum

If you’re the type of person who enjoys a coming out, this post is for you.

I have been getting ready to face the reality more publicly, and it took a bit of time to adjust myself to the news. Long story short: I am on autistic spectrum. And very typically for a woman, I found out already in my adulthood.

For quite some time already (few years at least) the topic has been popping up here and there. Anyone who suffers from mental illness and is fortunate enough to receive competent psychiatric care knows how diagnostic process is a long, difficult, and confusing one. You talk, and take tests, and then there’s more talks, more tests, therapy attempts, a lot of failures, meeting so many different specialists for more input, and at the end it may still not feel quite right.

This is especially true for complicated cases, where one or more issues overlay. I do believe in trusting the specialists, after all their expertise and training prepared them to deal with it, but still the topic is so vast and multidimensional, putting a correct diagnosis would be difficult even if we could open a human brain like a book and just see everything objectively.

Both the doctor and the patient are humans though, and that invites a lot of confusion and layers of subjectivity that are not so easy to navigate through. Admittely, I haven’t always been the easiest patient to deal with. I’m kind of judgy and impatient. There are things I know for a fact, and unless someone is providing proof for their counter-facts, I consider it a waste of my time (and money) if I have to explain to someone 10 times why their hypothesis is wrong and they still refuse to move forward because they got stuck on an impression.

I’ve also did not feel good when I would tell a therapist something that was bothering me and they would start to cry. Honestly it just felt like my situation is pathetic and it discouraged me to continue seeing them. I’d rather have someone say ‘yes, this sucks, but you have to move forward, have your space to heal and express your feelings but get your shit together‘. It sounds honest and supportive to me, more than just patting me on the back and saying ‘boo-hoo poor you‘. I know some people have it the opposite way, but this is just how it works, you need to find the therapist that suits you and your needs, and it takes time, they can’t all be how you need them to be, because all the other people would not receive the care they need.

I don’t hold it against them, I know this is only human to project, and to believe in your own judgement (after all we would literally just lay down and die and never do anything if we couldn’t believe in it), or let your feelings get ahead of you, but as I said it just wasn’t for me. I met a person I liked once, she was very go-getter, giving me practical tasks, and accepting that if I don’t want to talk about my trauma it means I really don’t want to talk about it, and if I say I don’t want pity, I mean I really don’t want pity, not that I am surpressing my needs for pity for whatever reason.

I’m an open book, and often am complimented on self-awareness. I just need the therapist to trust in this, and let us move forward so that we can really work on things.

Anyways, I digress. The digression does have to do with my diagnostic process, because it is very common in people on the spectrum. We just do not bullshit, and are honest like a child.

The process so far for me is that at first, for few past years few different specialist who met me (be it a therapist or a psychiatrist, I usually just come to fill the prescriptions, but they like to get to know me better on their own to assess the judgement of the previous doctors, which I appreciate), and every once in a while I’d hear ‘have you ever considered being autistic?‘, and ‘please see the X team to get tested for autism‘. And to be honest, I cannot say that. From time to time I did hear something about autism that felt very relatable, but I never really got into the topic, as I fell under the typical autism impression.

In Poland especially, autism is called a disorder. It’s treated like an illness, like stunted development, and you only hear about young boys who are mathematical geniuses who are unable to communicate with the world or show emotion. And for the longest time I thought that this is how it looks like.

Then I met few people on the spectrum, including a girl. I observed them on social media and see their posts about their ‘disorder‘, and found them very relatable but still I thought ‘I am just an introvert, obviously I am not socially adjusted very well, it’s probably because of lack of opportunity to socialize as a child, blah blah. I was just a difficult child‘. Plus after hearing so much critique about myself, how I am strong-minded, opinionated, I reject social norms and conventions, I’m weird, I communicate wrongly somehow, and in general I’m just an asshole. In the meantime I found out about MBTI, and I just thought ‘oh that’s right, I’m just an INTJ‘.

I cannot say it made too much sense to me, it made some. Jung observed people and concluded that people like me exist, they are just a very small minority, hence the societal clash. MBTI or Jungian psychology does not however touch on neuroscience. It doesn’t explain anything really. It just notices and describes what is there, but why it happens? How it happens? That is a massive blind spot.

At some point, about two years ago, I have decided to try it out. I have met more autistic people and realized ‘what if this is it. Another doctor again points me to the autistic diagnosis route, I would be an idiot to ignore all those suggestions from so many different people‘. At least I could rule it out.

I approached my mom about the subject first. To clarify, I am very close with my family. So close, that they are the most important people in my life (plus, my fiancé). I love them to death. But this love is a little bit more like a mother loving her children, instead of a child loving their mother. I want to take care of them, and for them to be happy and healthy. I never wanted their praise, even acceptance is too far of a stretch. I want them to know me for who I am. I don’t want them to believe in any illusions or impressions about me. I don’t want them to think of me lower, or higher, than I really am. And I want them to tolerate me. I know I’m a difficult person to deal with for most people, but from my loved ones I just want acknowledgement of what I really am, and just for us to live together in peace.

One thing I don’t want though is for them to be ashamed of me. They don’t have to be proud of me, it is just a nice touch sometimes when they are, but above all I just want to make them happy. I know taking care of myself is a way to achieve that, if I am healthy and happy, it will make them happy. Pride or ego boost is not on the list of my needs.

It does feel bad though were they ashamed of me. And it is one of my little anxieties. As much as I am a strong-willed person who will go after my values and will get into fights with people in the name of what (to me) is right, this is my higher priority. Anyone who knows me knows how much I despise the Catholic church, and yet I have halted my apostasy process, because of how it would impact my mom. Or rather how it would impact how people in our area would treat her after finding out what her daughter did. As much as it is unpleasant to still formally remain in Catholic church, I am at peace knowing that my actions did not bring my mother suffering. She isn’t ashamed of me and my values, but she would be publicly shamed. As much as I am immune to such things so can’t compute, I know to her this would be unbearable. Such is life.

Anyways, I feel very strongly about this. And when I approached my mom, saying that there is a chance that I am autistic and I am going to have it checked, her reaction was visibly negative. It was clear to me that this is a concept that she is not handling well and would rather it didn’t happen. At the time I decided to not go that way and close that door. There was something oddly shameful about it. As if it was better to be a mentally ill loner than an autistic person? It made me sad, but it made me realize also that my reality is not yet ready to face such possibility. My family is not ready, and I wasn’t sure if I was either.

I began reading about the subject. I must say there was not many sources that provided any useful insight into women with autism. In my mother tongue it was close to none, but even during those two years the subject boomed. More and more women have received their diagnosis and opened up about their experiences. I am forever grateful to those who were vocal about it.

You know how things do not make solid sense in life? There are many things that do, and you develop very strong structures of logic and data to make sense of things, and they lay on such strong foundations that it is close to impossible for them to be wrong? To me this was always science for example, to be specific, the fields of science that I have spent years studying. But social life, and my social experiences was always something that brought me the most confusion in life. Hyperposition, quantum entanglement and teleporting electrons are weird, fascinating, and obviously difficult topics, but to me it is way less confusing than that.

I’ve always had this depressing feeling of uniqueness. That even people who are very smart, emotionally intelligent, couldn’t really get me. And it never made sense why. I was studying psychology ever since I discovered it exists, and each answer to my questions brought even more questions.

Why was I bullied so badly? Why I only ever socialized online with people I’ve never met? Why each person I meet, even if we have something in common, was always somewhat living in a completely different world? Why the people who seem similar to me still never really get me? And vice versa, why are they driven by all those things I’ve read in psychology books that somehow never felt relatable to me? Why nobody believed the things I was saying about myself, that I knew for a fact to be true, and they treated it as something impossible? Why was I always alone, even when in a crowd?

These are just a few of the questions that plagued me. I’ve met exactly one person to truly understand me, and they’ve had pretty much the same experience as I have, of never being really the same species as everyone around them. We are all humans, we have the same brain, and somehow it’s not compatibile.

And then I ‘infiltrated‘ the autistic social groups, and it made sense.

Wow, I am almost tearing up.

I never needed to fit in, but what truly haunted me was the perpetual misunderstanding. I’ve lost many friends over the years precisely to that. Even recently I’ve reached an impass with one of my friends, and I thought the situation was handled exceptionally well and I was very happy for both of us, we both expressed our boundaries but also mutual sympathies, turned out that I was deluded and it was actually a conflict and we will probably not speak again. And I needed third person to tell me this.

I have developed a habit of compulsively explaining myself at every occasion, even when someone just clearly made a joke, I just take it seriously and try to explain, in hopes that I will avoid this constant misunderstandings, but my attempts are always futile.

It does suck to not be understood, and to be never seen as what you really are. I thought that maybe I was unlucky in meeting people, because it seemed to me always that I am just a mirror to them, with the amount of projection going on, but now I realize that most likely this is just how usually people operate, and they just expected nothing different from me.

When I found autistic communities I have never felt so normal before. I’m not some special snowflake, in those communities I am very typical, very average person. It felt honestly fantastic and as if somehow reality was hacked and I moved to a different dimension. People understand me, they get me, I am actually relatable to them.

My issues with overactive nervous system? Practically all of them have it.

I have found so many autistic meme/informative content that felt extemely relatable, but I felt guilty reposting them because I felt like I am taking some space from people who really struggle, and I should just accept things as they are. And then I realized this is me. Even many of my health issues are not so serious or uncommon as I thought, and they are literally caused by misadjustment of the world around.

What I also found out is that autism is not a disorder, it’s not an illness. Neurodivergent people have a different operating system in their brain, so to speak, but it’s perfectly normal and within healthy range of what humans can be. There is nothing weird or disordered about it. What’s more – autistic people are needed. The majority of people are the herd-builders, they keep society together and form the societal structures, which is necessary for our survival. But autistic people are also necessary, to complete all the other things, the majority is unable to do, or just do it less efficiently or less often. These are of course generalizations, each person is unique in their own way, and even autism is a spectrum, and two autistic people will not be the same.

Autistic people are needed for the society precisely in ways I have always wanted people to acknowledge, that I am good in, and this is what I can offer.

I am bad at neurotypical emotional support. I am bad at super-socializing. I am bad at performing all the societal norms and conventions that people expect. I am bad at expressing feelings, and I am bad at communication because I go for what is honest and real, and will refuse to say too little or too much. Instead of saying things the person wants to hear I will go into info-dump mode, because this is what I can do, and this is how I can help, but this isn’t how people usually need to be helped.

My friendships work only when people acknowledge what type of person I am and do not try to force me to change, but instead take what they can from me. I really want to help. I want to help always, to the point where by my highschool ‘friends’ I was called two-faced, because on one hand I would express that I do not particularly like some person, but then next moment if said person comes to me with some issue, I will drop everything to help them. I do not want to hang out with them or talk or do whatever afterwards, I just want to make sure that they’re okay.

But again, what help I can offer isn’t necessarily what the person needs, but then if someone knows me well I assume they should know what to expect.

I would not come to someone who can only draw stick figures to help me with art project, and then blame the bad results on them.

And you can never be good at everything. I know plenty of people who are excellent in human interactions, they know what to say, how to empathize, or even pretend-empathize with them so that they feel supported, and they take care of all the things I do not. Those people fall very short when it comes to offering truly useful expertise for example. Or designing and executing an efficient plan to reach certain results.

I once had a funny situation when I heard from one of my loved ones ‘can you for once listen to me and take the advice I am giving you without questioning it?‘ and so I did in attempt of a trust fall, but after a week I couldn’t handle not knowing what I am doing and I did my research, and realized I am literally poisoning myself and further damaging my liver. This type of person is fantastic when it comes to consolling others, but they should not attempt to provide an expert’s advice. Because they’re not experts.

The point is, all types of people are needed and serve a function in society and we should appreciate the differences and try to be more understanding and accomodating to all.

I had an appointment with one of the specialists from a team that diagnoses autism in adults, and expressed all my findings and asked for opinion and advice. She said she is basically sure I am autistic but still for a formal diagnosis I have to go through the tests.

Right now I have decided to postpone it for some other time, as the diagnosis is very expensive and I am not ready to splurge so much money on something that I do not really need. I do want to do it at some point to sort of close the subject and move on, but I know already what is the truth, and the formality of it doesn’t change anything in my life. It’s not an illness, there is no treatment, and the most important thing I already have – more understanding towards myself, and more confidence in demanding acceptance towards the accomodations I am organizing for myself. I am no longer feeling odd that I have to wear sunglasses indoors, that I won’t go into shopping mall without earplugs, that I get tired easily around people and might want to escape a party to take a nap or just sit in darkness and silence.

I know who I am, and I know many people are not suitable to be my friends or understand me or even like me, and that is okay. No hard feelings, everyone should go after what they personally like and need, and they are not obliged to like me, just like I am not obliged to like them or want them in my space. I know for most people this means something negative, but I mean it in the most positive way. Not wanting someone in your space does not mean you hate them or have something against them. If you do not feel bad after parting with a friend, or you do not have emotional attachment to them, this is something purely neutral, and not negative. If anything, this means you understand and accept the situation. We really should normalize that.

And not everything that seems odd really is odd. My eating disorder, anxiety, migraines, etc? Within autism spectrum it is as common and as boring as it gets. And it’s not caused exactly by the same things that typically cause these issues in neurotypical people.

Everything just clicked so hard it’s like as if I just discovered that I am a mammal with a fish brain.

I am also very relieved to finally have one answer that connects all the dots. For many years I had the branches figured out, the particular leaves and all, but I lacked the tree. Now I have the tree, but I need to examine its roots.

I have purchased some books on autism, and have some about specifically autism in women awaiting on my queue, I will be reporting back the progress of my understanding and just in general I will be sharing some interesting facts, because I feel like autism is so misunderstood and misrepresented in media, this is the time to boost the already growing interest of the general public in the subject.

I think there are far more people on autistic spectrum than we think (even though people already see that a lot of people go undiagnosed), and it is true especially for women. We are so well-adjusted, we force ourself to act every day since the moment we wake up, we are the genuine actors. We see how the society treat the ones who stand out. We hide who we are and what we are.

I hope that when I have my children they will grow up in far more understanding place than me, and if they happen to be autistic that I will be able to provide them all the support and care that I didn’t have. If they receive notes from school for bad behavior, I will go there and explain the entire situation, just to make sure this is not another case like it was with me.

And I hope to one day be rich enough that I will be able to fund more research and help towards children and adults with autism. Especially with how the diagnostic process looks like, there are not many teams that do it in Poland, and either the available dates are extemely far away, or it’s very expensive and unaffordable for the common folk. I work in IT, so I cannot complain about starving, and yet this is a big cost for me that I have to plan ahead. But for a child this formal diagnosis may change their entire lives. As an adult I have already lived a life full of adjusting myself to the unpleasant world, and dealt with my anger and frustration at the state of affairs, but to such a child, considering that we would also educate the parents on the matter, this could really mean avoiding so much suffering that most autistic people have to go through in life.

Besides the theoretical knowledge one thing I have on my list to learn for the nearest future is to accept my needs, and work towards really fulfilling them. I always felt very guilty for being so picky about everything. Even stupid things that normal people would quickly get over, like ‘I wanna just eat from bowls, but I received a plate, it’s not a big deal‘, ‘it’s bright in here and it gives me a headache but sunglasses should not be worn here, that’s fine‘, ‘these people are super loud but I can’t just tell them to shut up‘, to me this adds to daily frustrations, and I am going to work on asking for small things that are not a trouble to others (is it really such a pain to just let others eat from a plate, and just give this one person a bowl if they’re asking?).

I am also officially letting go of trying to fit in and hiding who I am. I know, it sounds very funny that I am saying ‘I am done fitting in‘, because come on. But yeah, this isn’t even my final form.

Looking forward to all the lessons, to continue the process, and to write down the findings. I hope to become one of those people who help others find themselves as well.

And hey, one of my wishes came true.

I am relatable.

Now I can officially joke that I am retarded and no-one can say a thing

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s