Typing The Words

I could easily have written this myself, it’s so close to my own thoughts.

Finally Knowing Me: An Autistic Life

Although the notion of me being autistic had been suggested by several people throughout the month of August 2016, and I’d started to research the idea seriously on the 23rd August, and then been to see my GP to get some sort of outside opinion on 16th September, by this time last year I hadn’t yet actually admitted to myself that this whole “autism hypothesis” thing was anything more than, well, a hypothesis!

I had, however, assembled a really tiny chat group on facebook, because I needed somewhere to be able to talk about what was going on, and the thought of declaring myself autistic on my main facebook wall (where most of my social life takes place) was WAY too much for me at that point. Furthermore, nobody outside of my immediate “every day” circle, or who hadn’t been there over the summer, knew what was going on. I…

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I feel full up and want to cry

I wrote this a few weeks ago, the last week of July. It felt a bit silly after, so I didn’t post it.  I coped with the events mentioned in the post, and I arranged an extra day off work after, to give me extra time to recover so it was OK-ish. And my parents’ response to seeing their first Great Grandchild was a joy to behold,that made me feel good, really good. 

Today however, the overwhelm is back. Lots of reasons, most of them small, it’s the cumulative effect of them all that filled me up. Added to which I needed to spend about 5 hours in Manchester Trafford centre (a large shopping mall, for those not in the UK), a sensory nightmare full of people, lights, noise, and even a Lush store that infuses most of the surrounding area with its over powering scents (who on earth can stand that stuff on their body?). I needed to leave but had to endure it for reasons beyond my control. As my husband drove home, I cried to myself for about half the 2 hour journey, ear phones tight in my ears, listening to Tubular Bells, a long term favourite that I used to listen to repeatedly as a teenager, again and again and again. Still has the power to calm and sooth me. So, I’ve decided maybe I should upload my original post. So here it is….. 

Written 30th July 2017

 This is a feeling I’m very familiar with. I was a serious crier as a child. From early babyhood apparently, but I also remember this well myself. In fact I’ve always been a crier. I’ve been embarrassed about doing it in public but unfortunately it’s happened many times. And as for at home, well, let’s just say I get through a lot of tissues. 

The thing is, I now realise that crying is my low level meltdown. I also now realise that what I have thought of in my head as being “full up” is actually being overwhelmed. I guess that’s because I’m not so good at recognising and describing my own emotions. So generally Full Up precedes crying, which can sometimes move on to a full on shouty thing, or sinking to the floor crying and rocking. Sometimes though, before the crying there’s a phase of being unable to talk, or as I now know it, being non verbal, and barely responsive to those around me. If I’m pressured to respond, crying will definitely follow and possibly some explosive shouting. 

For as long as I remember, crying has had 2 functions for me. The first is the usual emotional response, to my own upsets, but also I’m prone to crying at tragic news on TV, other peoples’ traumas, and things like injustices and animal cruelty. Maybe that’s an autistic tendancy to over empathise at times? 

The second reason I cry is to release the Full Up feeling. So much so, that at a time like now, I feel the need for a really good cry. I’ve been very quiet today. At home with my husband and younger daughter, having a semi pottering day, and they haven’t interfered, they left me to myself. I completed some aquarium jobs I had been planning (special interest #1, tropical fish keeping, current count 6 tanks), and I installed some more cat shelves (special interest #2 – cats, recent kitten addition, we are catifying as per Jackson Galaxy). I had my music on during these jobs, to cut out any other unwelcome irritating noise input. I only managed a short interaction with my special interest #3, dogs, brief walk today due to less than pleasant weather. I even followed these jobs up with a nice warm bath. So why do I still feel so full up? 

It’s my birthday in a few days time. And birthdays mean people want to be nice to you and see you and celebrate, and… and…. 

My first Grandchild, a beautiful baby girl, was born 6 weeks ago.  She was 4 weeks early, and it’s not been the easiest of times for my daughter, so I’ve had more contact with her than usual so I can support this new family. My heart is filled to bursting with love for this wonderful new human being, it’s an amazing feeling, the start of a new generation with some of my genes, and I’m so incredibly proud of my daughter for the way she has coped. But it’s meant they have been in my thoughts, in my head, more than they would normally be. I know this might sound selfish, self absorbed, distant, detached, but I usually have enough trouble coping with my own life in my head without worrying about the minutiae of the lives of others. I barely cope with my own life events, adding people not living within the immediate four walls of the family feels like too much. I can only cope with one thing in my head at a time. 

The above 2 events come together next weekend, my husband and I will be visiting my daughter, starting on my birthday and staying 2 nights. In a bed that isn’t mine, although I take my own pillow wherever I go, I need it to have a hope of getting any sleep in a strange bed. In a strange home, where I have to think before moving around, where I have to do things the way other people like them done. I love  all my children deeply and I’d do anything for them, but now they are adults, with partners, their own homes, own lives, and they are sociable, I have to mask and play the neurotypical game when with them and it’s hard. I want time alone with each one from time to time. Just the 2 of us. Add a third or fourth person or more, and I’m likely to be found in the kitchen alone, having withdrawn from the group.  Added to the sleep over visit, we will be taking them all to my parents’ house so my parents can meet their first Great grandchild for the first time. My mother likes to make a fuss about my birthday. Again, I love my parents, but I’d prefer no fuss. 

So despite my chance to Potter around to today, I am filled with anticipation about next weekend. It’s all good things. I genuinely can’t wait to hold my baby granddaughter again, inhale that delicious baby smell, hold my lips to her soft soft skin, feel her squirm in my arms (can you tell  I’m totally in love with her 😀😀😍😍), but that experience will come with a whole lot of other “stuff” that I’ll find difficult and overwhelming. And I’ll need to keep my NT mask on. Yes, they are my family, yes they know about my ASD, yes they have made efforts to learn and understand, but my daughter has a very new baby, born early, who spent time in the NICU, who still isn’t feeding as well as she could, and my parents are elderly now, in their 80’s. Now is not the time to expect everyone else to step back for me, I have to do the loving and right thing and do it their way. 

There’s price to pay for me. It’s started now. I feel all sort of bunged up, stuffed up, full up, like an over inflated balloon. Someone have me a useful analogy that really resonates for me. Everyone has a bucket that collects their stress. Think of the stress as water. As things happen though the day, the bucket fills higher and higher. Some stress adds just a few drops, maybe you look in the fridge and realise you forgot to buy milk. Minor stress, you can buy  some later. Some stress adds a whole glass full, like the morning commute being disrupted and you’ll be late to work. So as day passes, the bucket becomes more full. Overnight the water evaporates some of the water volume and the bucket is less full by morning. A good stress life balance is when the bucket never fills to the top and over flows. Chronic high level stress means the water is being added faster than it can evaporate, and eventually it overflows, resulting in poor mental health. However, it’s possible to pour some of the water away by doing activities that bring balance, doing things that make you happy or calm. For NT’s this often includes socialising activities, and for autistics it can include retreating into a special interest. It can also be something like mediation, yoga or exercise. So when if the bucket fills quickly, there are ways to stop the bucket overflowing. 

However, there’s a crucial difference between people. Some people appear to have a bigger bucket than others and although this can apply to any neurotype, it seems that autistics tend to have much smaller buckets than most NT’s. So every day stress fills my tiny bucket faster, and added to that, I find stress in events that many neurotypicals take in their stride. The idea that my bucket is full to overflowing fits very well with my sense of feeling full up. When the bucket is full to the brim, I go into shutdown. When the bucket overflows, that’s when meltdown occurs. 

I didn’t meltdown today, but I did more or less shutdown. It feels a bit silly really, my main issue at the moment being a few happy events that aren’t until a week away, but that’s how it is with me. The anticipation of social events, even relatively small ones, provides a kind of pressure within me. Anxiety I suppose. I don’t think I’m describing it very well here, but I think it would be called anxiety by many people. This is my life, this is normal for me, and this time last year I had no idea that most other people don’t experience life like this. 

I still feel like a jolly good cry would make me feel better, but I do have other strategies. It wasn’t really possible to go for a run today, I don’t like running in rain, but I’ll try tomorrow. I’ll listen to my favourite calming music. I’ll sit on a chair watching my fish swim around, I’ll play with the dogs and stroke the cats. And right now I’m going to listen to a Headspace meditation to sooth me to sleep.  

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.