Angry or Gentle: being misunderstood

This is a wonderful post and one that I wholeheartedly agree with.

Autism and expectations

Year one post-autism-diagnosis was a year of changing how I see myself. It was a year of learning to accept my changeable limits and deciding to work with my autism instead of against it.

So far, year two is about other people. Those in my immediate circle, family and friends, have begun to feel comfortable asking me questions, they’ve mentioned memories I’ve long-forgotten and been able to apply correct motives to confusing actions.

And now I’m moving on again, to interactions with other autistic people, and I’m finding a whole new view; how I come across to those who intrinsically understand how I’m seeing things.

Growing up I would have been described as prickly, temperamental, angry, unpredictable, enigmatic, anxious, cold, detached, blunt.

For the first time I have been described by a new friend as gentle, soothing, certain, brave, clear, powerful, even-handed.

These are new angles for me, new ways…

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I am not from another planet.

There’s a lot of talk these days about diversity. The recent Eurovision song contest, hosted this year by Ukraine, in Kiev, had a theme of diversity. I’m guessing they mostly meant ethnic and cultural diversity but there are other forms as well. Gender and sexual diversity is a big topic in the early 21st century and for those of us who sit on the autistic spectrum, neuro diversity is another that we are intersted in.

So what is diversity? One dictionary definition is “a range of different things”. When used in the examples I have used I believe it means a range of different human beings. And I am one of those different humans.

But hold on, aren’t all humans different? I have adult identical twin daughters and despite being handed the exact same genetic code, same family environment and similar experiences they have many differences. There is no such thing as 2 humans who are the same. We are all diverse. The whole human race is diverse.

I wish I didn’t need to say that, but it’s human nature (and I would argue it’s in the nature of all living things) to stay close to those who are similar to us. Despite a need for the gene pool to be constantly mixed and remixed we definitely like to stick to the human types similar to ourselves. And in doing so, we sideline those who are different, or diverse and end up making them stand out even more. 

I’m different from the majority of the human population. I have a brain neurology that is different from the dominant neurotype. So I have a label of being neuro-diverse or neuro-atypical. Incidentally, so do people with ADHD, or with various different psychological profiles, including psychopaths. I’m not sure I’m comfortable sharing the term neuro diversity with psychopaths, however that’s the way it is, for now.

As recognition of the autistic neurotype has risen and more people are being identified as on the autistic spectrum, initially boys in childhood, then girls, and gradually more adults, there has been the rise of the voices of those adults. Quite right too I say, no person of one neurotype can understand the internal experience of any other type without listening to each other. As the struggle to work out how our experiences differ continued, and the realisation that autistics have difficulty reading body language and understanding some subtleties and nuances of language and social interaction, some took to describing the differences as if Autistics had arrived as aliens from a different planet, often called planet Asperger.

Now I do get it, really I do, I understand why this came about. The majority of humans were trying to get their heads  around the way we need to be taught body language and social skills, and using the Aspergian from planet Asperger was a fairly quick and easy way to do that. However I’m baffled by the need of anyone to go to the extreme of inventing a planet for us to have come from. I am in what is called a mixed marriage, my husband and I are from opposite sides of the globe, one from the West, and one from the far East. Our cultures are very different and our mother tongues are just as different, so much so that one uses the roman alphabet and the other uses characters for words. We each had to learn the social rules of each culture in order to get along with our in-laws. We look different. Much more different than one neurotype to another. But deep down we are both human beings. Homo sapiens. We are much more alike than we are different. 

It’s been a joy and a revelation to discover so many autistic voices around the world that resonate so closely with my own thoughts, feelings, experiences. It has felt like I have found my tribe, I’ve come home, these are my people. I’ve never felt that connected before. I love that we are able to share experiences and support across the globe in this way. But……. 

As much as I’m glad I know and understand my differences now, I don’t want to live the rest of my life being defined by those differences. I want to be included in the rest of the world also. The fact is, all neurotypes, no matter how superficially different or how many of those differences there are, we all have so much more in common than we have in differences. Let’s celebrate that shall we. It doesn’t matter where we are born, what our ethnic group is, what our eye or hair or skin colour is what language we grow up with, or how our brain is wired, we are all a part of this big wonderfully diverse but single species of animal, humans. Acceptance and full inclusion is what we really need, and it seems to me that is more likely to occur when we start looking past the differences and concentrate on our similarities, as they are far more in numbers and strength than any diversities. I’m not saying the differences aren’t worth recognising, but when that difference defines the whole person, I believe we are in danger of losing the essence of ourselves, our simple common humanity. 

Pottering around

Today I didn’t have to go to work and I had the house to myself all day while my husband was working. I did quite a lot of things. I fed the dogs, fed the cats, fed the fish (we have 4 largest tanks in our house, you might even call it a special interest 😁😁). I cleaned the coffee machine, did several loads of laundry, checked the household accounts, cut the grass, did some weeding, walked to vet surgery to register new kitten due to arrive next week. Bought some cat toys in the pet shop and walked back home. Changed some water in the fish tanks and did general weekly maintenance. Vacuumed the floors, filled the dishwasher and made my lunch and also some mushroom soup to take to work for lunch. Read the leaflet from the vet about a new kitten. 

Basically I did something and nothing. It wasn’t done in a straight line, I flitted from one task to another and back again, then back around in a circle again as my mind skipped and jumped from one thing to another. I did manage to complete most of the tasks (although there is a lot of loose paperwork still on the table from my admin morning) which is good going for me at home. I simply allowed the day to unfold all by itself, allowing one task to suggest another, no time pressure, no one to see if I left a mess behind myself and I could do whatever I chose to do. 

It was utter bliss. A few days of “pottering time” as I prefer to call my solitary de-peopling days, and I always feel renergised and relaxed at the same time, ready to take on and cope in the NT world yet again. 

Yes. Indeed it has been a good day today. 

I think many of us knew this all ready

I suspect the ratio could narrow further yet. Only time will tell as more and more females are diagnosed. I for one can’t be the only one who reached the grand age of 56 before discovering the real me. People talk of late identification/diagnosis in their twenties and thirties. That’s only delayed, late is over 40 or 50 I’d say, when you have spent a significant amount adult life feeling like the proverbial square peg in a round hole (cue visual cartoon like images running through my head of a square peg being bashed by a mallet in an attempt to fit it in a round hole). And anyway, who said this HAS to happen in childhood?  It doesn’t matter when, it’s still an awakening. Yes, childhood diagnosis can get the autistic certain accommodations to ease the awful journey through school (notice I said school, not childhood. It’s the most horrendous environment for any autistic child, the trauma and feelings of stress are still with me today 4 decades later), and hopefully in the workplace, but really, it’s the identification at any age that’s important. 

May the rise in female autistic identification continue, there are still many,  many out there struggling but not understanding why or knowing how to help themselves. I can’t say that the initial months were easy for me, I suspect the older we are at the time, the greater the identity crisis. However, 8 months on I really believe this could have been best thing that happened to me, I am now so much more comfortable in my own skin. This is who I am, I finally understand “me”. And I am convinced there are many more under the radar yet to make this same amazing discovery. 

The problem with conversations

I think I hold perfectly good conversations. I’m the only one who believes this though. So what’s the problem with my ability to hold a conversation To NT standards? The following points are purely from my own perspective, I’m not claiming I know or understand the neurology behind them and others may have a different view depending on their experiences.  

I think there are a number of things going on here. Firstly of course there is the social aspect. NTs use 2 way conversation as a bonding exercise as well as to impart information. I use it as a way to impart information. If I want to hear what the other person has to say, I’ll happily stay quiet and listen. But since silly chit chat about the weather, sports results or hearing about someone’s latest visit to the doctor (yet again) holds no interest for me, there’s nothing useful to learn, my mind will quickly wander to something that I consider interesting and off I go. It may be what is so charmingly called verbal diarrhoea, but it’s informative diarrhoea 😂😂. 

Now this is the point at which I believe several autistic traits clash together at one time. Special interests, verbal language processing and and executive functioning with a side helping of lack of interest in the social aspect of conversation (bonding). 

I can’t do it two-way because that would require holding 2 things in my head at one time, what I want to say next, and what the other person is saying. As soon as they say something that I want to respond to, it may falls out of my mouth, no pause, no waiting for the other person to stop, and the other person may carry on for another sentence, or even two, but that doesn’t stop me, once I’m off the starting blocks there seems to be no stopping me. But then the trouble is my own verbal processing. I usually have a lot of pauses as I speak, it’s a bit like video streaming buffering, in the days before superfast Internet. I speak a bit, but the next words are taking their time to travel from my brain to my mouth, so there’s a pause while I refill my speech cache enough to carry on. I can actually feel this happening, I know the words I want to say next in my head, but they stubbornly refuse to reach my mouth in a nice smooth timely manner. Trust me, it’s as annoying for me as it must be to listen to. So. Sometimes it’s as if the words are right there, in the air just in front of me, but I can’t quite reach them to send them out of my Mouth. I’m sure everyone, autistic or not, has times like this, but  for me, this is how I talk all of time. 

Then something odd happens, or to me it’s odd anyway. I pause, waiting for my brain to catch up send the words on their way out into the big wide world, but what does that pause mean to most NT’s? Ah, yes, it’s time to reply. So I haven’t finished what I’m trying to say, them someone interrupts me. Or at least to me it’s interrupting. They start off on a reply, or something to continue the conversion, while I’m left thinking “what on earth happened? Didn’t they realise I haven’t finished?” But this doesn’t matter to non autistics, because they are used to conversing about nothing in particular, that’s what they do. Whereas while I can make an effort and ask silly questions that I don’t really care about (Do you think it’ll rain today? Where did you get your hair done? Where are you going on holiday?), I generally want a conversation to have some structure,  meaning and propose. So although I may pause, it doesn’t mean I meant for you to interject, it means what it sounds like, a pause. The fact that this happens so often to me highlights to me just how little attention non autistic people pay to the actual words in a conversation, it really is about verbal back and  forth for them, social bonding, and nothing more. How very odd indeed. Why speak if you aren’t going to exchange useful information, isn’t that why we humans talk. Plenty of other animals have noises for social bonding, finding a mate, warning of danger. Only we humans have the ability to pass on detailed information via sound communication, so why waste it on silly nothings? Oh well, if it keeps some people happy, hey ho. 

Of course that is only part of the full picture. As an autistic I excel at hogging a conversation, or more accurately I suppose I should say I excel at monologues, even if they do have a bit of a juddery pace. I think part of the pausing is also the result of my keenness to impart what I believe is highly interesting and useful information, so I simply can’t speak fast enough to get it out as fast as the thoughts are occurring in my brain, the words come so fast that it’s like trying to squeeze 4 lanes of traffic down through a single lane tunnel, it all jams up and grinds to a halt from time to time. 

My husband and I have very polar opposite styles of communication. He’s like a race horse on speed. He charges around, multi tasking faster than most women (although whether he’s very thorough is debatable) and words spill out of his mouth left right and centre as he switches from one topic to another.  Whereas I may wander along a meandering path as I talk, but it’s all one long flow, all connected, and I need time to move on from one topic to the next. I also need time to listen to the sounds, hear and process the words. We have recently become aware that most of our arguments arise when this mismatch of communication styles clashes. He’s going so fast and I can’t keep up, I get stressed, I shout, and boom, we are off. Or I’m taking too long for him, not getting to my point fast enough, he gets stressed, he shouts, boom, we are off. The exact trigger point is almost always lost because we now realise it’s all about the mismatch in the way we communicate. Actually, the other mismatch is my love of detail and his need for speed and he’s happy to just go with the essential bullet points in order to achieve that. The more detail the better for me, no matter how long that takes. Anyway, we’ve been thinking about this alot lately, now we know we are literally running different operating systems. I’m reminding him to slow down for me, and I’m trying to write things down before talking to him, so I can do it quicker and with less meandering deviation and unnecessary (to him at least) detail. It’s improving, little by little we are finding a place to meet in the middle. It’s not easy, but we are trying, and trying again and although practice may not mean 100% perfect, improvements are always a good thing. And I am making a special effort to allow everyone else their say, even if it means I have to listen to a bit of small talk along the way. I love my family dearly, and if this is what I need to do to maintain a strong bond with them, that is what I will endeavour to do. In return they might need to allow me the occasional monologue but hopefully we’ll all be giving as well as taking in a fair manner and they will understand that despite appearances sometimes, I am genuinely interested in their lives. 

End of monologue 😀😀😀👏👏👏

I’m Ok. 

Yes, I am. I’m actually OK. Maybe I’ll still have the odd wobble from time to time, maybe when someone makes a comment that they think is well meaning, but that comes across as patronising or shows a distinct lack of acceptance or understanding, but I think that I’m going to be OK. It’s going to be all right. 
Of course in early September 2016 I thought my whole world had imploded in on itself and I don’t think I’ve ever felt quite as alone as I did when I first looked at the scores  I was getting on ASD indicator tests online. At that moment I didn’t think I’d ever met anyone else with Asperger’s, autism, ASD, call it what you will. Of course I’m now absolutely sure that I was wrong on that. Even if the figures for males on the spectrum are close to correct, I have a suspicion that there are very many more unidentified females out there. I mean, come on, I was 56 before I even suspected I’m autistic, somehow, I’d masked and coped (or not sometimes) and I simply thought I was a rubbish human being. Ok, I’m rubbish at trying to be NT, but I spent all those years believing I wasn’t as good as everyone else, that I was different somehow but not understanding why or how, that because I found interactions stressful and difficult and I preferred my own home space more than anywhere else and leaving my home was difficult on some days, that I was somehow a lesser being. I questioned the value of my existence, whether it was worth staying alive, if I even deserved a space on this earth. Multiple times, over most of my lifetime since my teens. And all that time I never once associated the word autistic with myself. I always knew I’m bright, it has been the one thing I have going for me, but I have trouble with so many other things, especially when they involve people. I still believe school is a cruel place to force children into every day for 13 years. I have no happy thoughts about any of my time in school. I didn’t know why, but I certainly found it incredibly stressful. I used to want to live in New Zealand, based purely on the fact that it is so sparsely populated and I once read that there are (or were at the time) more sheep than people there. I didn’t know why I felt it would be such a lovely thing to live with a less dense population (I grew up in London, which is pretty highly populated), but I craved countryside and fields and trees more than being with other human beings. Don’t get me wrong, I don’t dislike all people, I just find it exhausting and stressful dealing with them too much. I love my family dearly and until my babies were born I didn’t know it was possible to love someone so very very much, so deeply that it practically hurt my heart with all the love I had for my babies. Of course the bond has loosened a little since they grew up and are starting their own families, but they are still at the centre of my consciousness and my heart. However, since they became adults, I find I do tire from too much intense contact with them and I was aware of it, but embarrassed to admit it and thought I had to be the worst mother in the world for feeling like that. Yet another thing I thought made me “not worthy”. 

I’m rambling away from my point as usual. What I mean to say is, I had been struggling sometimes to put one foot in front of the other, day in day out, but I kept going, for the sake of my family, my children. And I had no idea that I wasn’t a rubbish human being, I was only rubbish at trying to be like the majority of human beings. What didn’t realise back then was that I’m a pretty good autistic. So good in fact, at finding ways of coping and masking and covering my struggles, that it took all of 56 years for anyone to think I could be autistic. Well, that’s not quite true, it transpired that one of my now adult daughters and my sister, who both work with children, some of whom are autistic, had both had a suspicion that I might be Asperger’s, but they didn’t persue it or mention it to me or anyone else. So I carried on, ignorant and barely coping when I got a job outside the home, for the first time in over 30 years, my first time back into the big wide world of regular contact with many people in 3 decades. 

Now if I could go that long undiscovered, how many other women are there out there like me, maybe in their 30’s or 40’s, waiting to make the shocking discovery at 56? I keep reading blog after blog by women diagnosed after the age of 30. Yes there are men as well, but males seem to be picked up much earlier. 

I’m starting to wonder if the gender ratio may be much closer than previously thought, maybe even close to 1:1. Females manage so well with masking, they are harder to spot unless you know the more subtle outward signs we may exhibit. Most of the time I think we just battle on with our internal struggle, thinking we are rubbish at the very act of living, but so unaware that we are simply wired a bit differently to the predominant neurotype of human beings. 

It was huge shock to discover this about myself. Huge. I can’t describe how huge. I wanted it to stop (stop what? I didn’t know, I only knew I was in deep distress and I wanted the distress to stop), I wanted to go back to the moments before the epiphany, I wanted to die, I wanted to go to sleep and never wake up again. 

But I followed advice and went through with an ASD assessment and I got my 16 page report with that sentence – meets the criteria for ASD. The last 4 pages of the report are mainly recommendations to help me come to terms with the diagnosis and there’s a comprehensive reading list that I dutifully worked my way through, along with devouring blogs by autistic authors, mainly female. So many that echo my own thoughts, feelings, experiences. I started to realise I’m not alone. I don’t have any great desire to meet lots of them in person, but it’s so good to know that I’m not such an oddball. There are others like me out there. We are all so alike but also so different. I love it. Not only have I come to understand myself, I’ve gradually come round to accepting myself. Thank you neuro-sisters, you have saved my life, literally. As I saw that others often had similar crisies of identity, they passed through it, some quickly, some slowly, but they did pass on through. I started to hope I would also do the same, week by week I started to believe I might be ok. I started to think that this is no great disaster. I’m not disabled, I’m a bit different. I can’t change that invisible difference any more than I could change the noticeable difference of my skin colour (by that I mean by being white, I’m different from people with brown or black skin). I did want to initially, I kept crying to myself thinking I don’t want this. But it’s not a “thing” I can give away, it’s just me, the way I’m made, and just because I find the majority world challenging to deal with and they find us equally challenging to deal with, doesn’t make the majority better or worse. It only means there are more of them than us and therefore they get to run the world and set up the environment to suit their needs, which doesn’t necessarily suit our needs. But I’ve coped up to now, so I will continue to cope. It’s hard, I don’t cope all the time, I shut down most evenings after a full on day at work, and if pushed to do too much I’ll end up in meltdown. My relationship with my husband was suffering badly from me working and arriving home all peopled out and literally unable speak, barely able to nod never mind force words from my brain to my mouth and out into the air, but with our new understanding of how I operate (running AOS rather than NTOS), my husband knows it’s nothing personal against him when I don’t speak. I simply don’t have much battery power left and I need to recharge by being left alone (not necessarily literally alone, I like him in the room, but I don’t want to interact for a while, it’s too much effort), he doesn’t force me to talk to him, he quietly lets me be, allows me alone time within myself, in my own head. He knows to write things down sometimes, he knows I can’t keep with his super fast brain processing speed when he talks and moves from one topic to another very quickly. He knows at the weekend allowing me to potter alone in the garden is good for him as well as me, because I’m much less likely to meltdown later. And we are getting along so much better now. All because we discovered who I really am and adjusted our interactions accordingly. 

So I’m OK and I’m going to be fine. I’m finding pride in my new identity, a sense of belonging to this tribe that I’ve never ever felt before, I was always on the outside looking in, not sure why, but not knowing how to join in. But now I have a tribe to belong to and I can still belong in my family and my amazing work colleagues team (they have accepted this all so much faster and better than I did initially). We live in a multi cultural, multi faith, multi neurotype, multi gender identity, multi sexual orientation world. It’s been ok to belong to more than one of those groups for a long time, and now I suppose I have my own cross over identity. And it’s fine. In fact it’s good. 

I do believe I could turn out to be very OK indeed.