Autscriptic: Mild Autism

This is an exceptional piece of writing. It describes so well how feel when faced with a similar reaction.

Autism and Expectations

In 2016 I wrote a post that seemed to capture people’s imagination in a way that others didn’t. Autscriptic has since been shared far and wide.

It taught me that there is great power in sharing conversations between neurotypes: Laying bare the misunderstandings that tangle us up.

The first Autscriptic was about the trials of masking, this Autscriptic is about the times when I’ve had people quantify my autism based on how well I can smile. Once again it is not me recounting any one conversation, it’s a story based on many conversations I have had. Usually with people who know little about me and less about my autism diagnosis.

You must have a mild form



Mild and soft and gentle as a summer rain?

I suppose

What does mild mean?

Well, you’re not very… flappy. You can talk, you can look at me. I just mean you…

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The A word returning to UK BBC tv soon.

There are free tickets available for those who can get to Central London on 26th October.

When the first series was on, 2 years ago, I had no idea at the time I’m autistic, but I loved young Joe’s earphones. It’s one of my ways of shutting out the world, but I didn’t make the connection at the time. Silly me. 

Watch “Understanding ASC in adulthood: insight from interviews and brain imaging” on YouTube

I was one of the 29 autistic participants in this research. There’s more to come, but this is Dr Liz Milne’s initial findings.

There was a useful Q&A session after the talk, which for confidentiality reasons isn’t shown here, but it allowed a bit more depth on some of the areas covered. 

I’m not just Socially Awkward

Socially different. That’s a great phrase from an inspiring autistic writer.

Autism and Expectations

When I tell people I’m autistic it usually goes one of two ways; either they can’t make me fit into their idea of what autism is and completely reject it, or they mark me down as “socially awkward” and leave it there.

It explains my lack of constant contact, it explains my monologuing about things that interest me, it explains why on social occasions I move around a room like a loose cog in a machine – catching on things, getting stuck in places, jarring against this and that before being knocked into a corner and staying there.

Those are the things about me that you can see. What you can’t see are the other bits; my problems with Executive Function, my never-ending battle with literalness, my lip-reading over auditory-processing, my sensory issues, my affinity with numbers and disassociation with names, and on and on and on.

When people classify…

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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.