Mild Autism

This was going to be a personal Facebook status about mild autism, but it got long. It’s really for my friends but I thought why not write it here and open it up to everybody.

mild autism title image

I’m coming up to a year post official autism diagnosis. I’ve spent the last four years going back over almost every moment of my entire life, re-seeing it from an autistic perspective. All the signs were there, you know. The crushing shyness when I was small, the very early reading, the obsessing over specific objects, the having to have certain things. I’ve covered some of this before.

I didn’t rock and bash my head against walls. I didn’t sit in the corner and scream. I didn’t flap my hands. I didn’t have genius mathematic abilities. Is this what ‘severe’ autism looks like in your mind? Maybe. Maybe that’s just what you learned from films about how autism looks. It’s a stereotype.

I could talk. I could look people in the eye (but not when I was being shouted at or being very shy). I could nod and smile in the right places, but occasionally I would completely misunderstand what someone had said and they’d look baffled at my response because I took what they said very literally. I could get jobs, but could I keep them for long? Apart from the occasional slip-up, people only saw what I allowed them to see as I got older.

If I had said I was autistic back then (hell, even now) people might have looked at me and said I must be on the very ‘mild’ end of the spectrum.

However, a spectrum doesn’t have ends. Autism isn’t on a line. It’s more of a circle. I saw a thing once, that explains the round spectrum concept really well, in an easy-read cartoon form.

People who know me offline might say I must only have mild autism because really autistic people have meltdowns. My meltdowns have always been a mostly private affair. If you’ve been super-close with me then you’ve witnessed them, you just didn’t know it.

I can give specific and real examples that certain people who are in my life will recognise, of times I was having a meltdown but neither of us knew it because we knew nothing about autism back then.

I want to come back to this word, ‘mild’ though. What does it even mean? I’ll tell you. It means you can’t see anything ‘wrong’ with me when you look at me. Think about that for a minute. I don’t look like your idea of ‘disabled’. I’m right, aren’t I? And yet it is a disability. From the UK Government website:

  • autism – a lifelong developmental disability that affects how a person communicates with and relates to others

Even my own doctor (not the one I have now) didn’t believe I could possibly be autistic. He referred me anyway, so maybe he thought “ah, maybe she just has ‘mild’ aspergers”. Here’s a hint, doc: aspergers is autism is aspergers is autism. You can’t even get diagnosed with aspergers any more (well, I couldn’t, but results may vary by local health authority). It’s all been merged together in the diagnostic manuals.

So you may see me as having a ‘mild’ form of autism. But remember, you’re only seeing what I allow you to see. I may slip-up due to a build-up of overwhelm and confusion and then you might see a chink of autism slipping through. Likely you won’t realise it’s autism and just think I’m a bit ‘odd’. If I’m spending a lot of time at home, then when I’m out I’m mostly able to hide my autistic characteristics until I get home. If I’ve had to spend a lot of time with other people, out and about, doing a lot of different things, with lots of different noises going on at once, I’m more likely to not be able to contain it.

I wouldn’t change who I am, but autism makes life hard. Not just for me, but for the people I’m closest to as well. Most people won’t usually see the difficulties because it’s all going on in my brain and not showing much on the outside. There are upsides, but that’s another post for another day.

I don’t have mild autism.

You experience my autism mildly. There’s a difference.

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This post was inspired by Rhi’s ‘Autscriptic‘ post. You should read it; Rhi is a fantastic writer.

Current Obsession

I recently had an “OMG I’ve found my people!” moment.

I’ve been a member of an autistic women’s group online for a while now, and someone posted something there that could have been written about (or by) me.

It was about a seemingly common trait in autistics where we fall down a metaphorical rabbit-hole when something triggers a need to know more about something.

alice falling down rabbit hole gif

An example (and it’s long because this is something I could talk about for hours!):

Several years ago, I found someone in my family tree who was killed in battle in WW1. This was the trigger. It made me need to learn all about him and how & where he died. I say “need” because although it’s also a ‘want’, it feels urgent when this kind of thing happens, like I have to know everything about him, right now.

I couldn’t get enough of trying to find out everything I possibly could about him. I even wrote to the War Graves Commission for this photo of his memorial stone (slightly grim fact: it doesn’t mark where his body is – he is buried in this cemetery but it was badly bombed and his remains were never found / recovered).

I just kept needing to know more and more so I got into reading books and memoirs on WW1 in Europe. I mean, literally, that’s the only thing I read for 2 years. Interspersed with the reading I was looking at maps online and finding the places mentioned in the books. I was using Google Street View to explore these places as they are today. I scoured the internet looking for photos and information of my lost ancestor. All I could find were his War Office records, including this document about the medals he earned.

Eric

Current Obsession:

Eventually I’d pretty much learned everything I needed to know about WW1 and it led on to reading about the Second World War. I’m still reading about WW2 a couple of years later and now I’ve got a massive work-in-progress online map of Europe pinpointing all sorts of things from that time period.

Here’s a small part of it:

warsaw ghetto map

The red outline shows the borders of the Warsaw Ghetto in Poland that was already out there, online. Everything else is stuff I’ve added. On my map I’ve got pins showing where certain events took place – from big things like the Warsaw Ghetto to numerous Nazi death camps to random things like the location of a cafe where Władysław Szpilman played the piano (Have you seen the film The Pianist? It’s excellent) and where Oskar Schindler lived. And this image above is just a very small part of my map. My map covers the entire European continent.

99% of the books I read are personal memoirs of the Holocaust and the Polish people. Why Poland? No particular reason, but it’s all fascinating stuff.

And I’m even learning Polish because there’s a book I want to read that’s only been published in Polish. Can you believe that? I’m learning a whole other language just to read one book that probably won’t even tell me a great deal about war-time Poland that I don’t already know.

An aside: this is the level of my learning so far – Czy koń jest kotem? Nie, lew jest dużym kotem!  😆 Here’s the translation to English. I’m sure you’ll agree, I’ll be able to read a whole book in no time  😆 I’m thinking it’ll be a few years before I can read the book…

All of this because I happened to discover an interesting ancestor.

So I’ve always felt like this, but pre-internet it wasn’t as easy to access the information I wanted / needed. I’d just read and read, and ask questions or sit daydreaming and wondering about things. I didn’t know I was autistic then, and I guess I assumed everyone was like this. There have been many nights where I haven’t even gone to bed because I was too busy researching this Poland stuff. I get lost down the rabbit-hole. Except in our house we say I ‘got lost in Poland’. And according to the other commenters on the group I mentioned earlier, this happens to them too. It’s the whole ‘special interest’ thing. The obsessive thing. The ‘I need to know this thing now, sleep is for the weak, and I will go off on tangents until I burn out and move onto something else’ thing.

I don’t really know why it’s only referred to as a ‘special interest’ when the person concerned is autistic/aspergers though. In neurotypical people it’s just called a hobby or an interest…

It’s a thing about me that I really enjoy though; something sparking my interest and getting deep into the research, learning all there is to learn. I love it!

What’s your all-consuming hobby, special interest or current obsession?

 

Through an Autistic Lens

through an autism lens

Photo by Sharon Pittaway on Unsplash

A weird thing happens when you receive a late diagnosis of autism spectrum disorder. You replay your whole life, viewing everything that ever happened through an autistic lens. This isn’t unique to me – I’m pretty sure it happens to everyone diagnosed as an adult.  You start to think “Oh! So that’s why I was…” and “Ah, that makes sense now…!” and “Wow, how did nobody realise?”
 
Asperger’s Syndrome wasn’t a diagnosable condition in the UK when I was little, so I understand why I wasn’t diagnosed then. But still…there was always something about me. I always knew I was different, and felt that I didn’t fit in. I discussed this with my mother a few years ago. She said yes, we were different – because when I was a child we were hippies and vegetarian and nobody else was, where we lived. So we stood out. I tried telling her it was more than that, but she didn’t get it and I couldn’t explain.
 

When you view my childhood through an autistic lens, you start to pick out the signs:

  • Separation anxiety – not wanting my mother to leave me at playgroup; always hiding behind my mother’s long skirt when other adults spoke to me.
  • Never initiating role-playing games with other children; always assigned a ‘supporting role’.
  • I was an abnormally early reader; reading like a 12 year old when I was 4.
  • Delayed eruption of teeth (39 years old and I still have a baby tooth! Some of the others wouldn’t come out on their own so they got removed. Dental problems have plagued me all my life and continue to do so.
  • Not really knowing how to act socially. I’d pay attention to what my peers were doing and copy them (and get it not-quite-right, a lot of the time).
  • Having issues with drinks. I would only drink out of one special cup. Until “it got lost” (taken away from me). I never drank that type of drink again to this day. After the cup removal, I’d only drink pineapple juice. Until the acidity made me ill. Then I would only drink orange juice. Until it also made me ill. Then orange squash (and only one brand). In my teens I discovered Coke and that’s still all I drink. Rarely, I’ll drink water. There was a period of some years when I’d drink alcohol, but we’ll get to that in another post some time.
  • Certain food textures made me gag. I used to throw my packed lunches away on the way to school because I couldn’t eat what was inside. I earned the label of ‘fussy eater’.
  • Repetitive behaviours. I’d watch certain films over and over again with my next-door neighbour until I knew the scripts.
  • Narrow interests – from the age of about 12 I would only read books by two authors: Stephen King and Dean Koontz.
  • I don’t remember if I had a problem with the classic symptom of struggling to maintain eye contact as a child. As a teen and an adult I do have a problem with suddenly realising I’ve been looking someone in the eye for way too long. I’ll also realise my face is making the wrong expression. For example, someone’s telling me something that causes me to smile. The conversation moves on to something else, and I’ll notice I’m still smiling and it’s inappropriate. I then lose track of the conversation a bit while I try to make the right expression.

This isn’t a complete list. There are lots more examples, and I’m sure I’ll post about this again at some point, but the signs were there as a child.

If you’re a late-diagnosed ASD woman reading this, I’m interested to hear what early signs you notice when you look back on your own childhood. Let me know in the comments.

sign off pic

 

 

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How Best To Move Forward?

It’s March 9th and this is the first post on my blog this year. What happened to stop me blogging?

My official Autism Spectrum Condition diagnosis happened and I received the written report about it.

I’ve known for over 3 years that I was on the spectrum, but it took that long to get The Official Word from a specialist. And now, almost daily, I get hit by revelation after revelation that actually my ‘condition’ has been pretty obvious all my life, if only there had been people around me who knew the signs and could spot them. Honestly, it’s astonishing, the things I’m discovering about myself-now and my past-self. It’s simultaneously enlightening and devastating.

This was supposed to be a blog about my little art business, but lately all I want to talk about here is this diagnosis. I have 3 unpublished draft posts about it. And I haven’t been doing a great deal of art lately because I’ve had other problems that have prevented me from getting on with things. (Namely, The Great Insomnia War of 2016-2017, which I won, and The Battle of Depression, which is ongoing). So how to move forward?

The renewal of my web hosting is coming up in May and I’m unsure whether or not to renew as it doesn’t come cheap. I feel like I’m entering a new chapter in life and I don’t know whether to

  • renew this website and continue hardly ever posting about art
  • renew this website and bore my artsy readers to death posting about autism/aspergers
  • close this website and start a new one focused on autism/aspergers, with occasional art, or
  • run two sites side by side (I’d probably use a free blog platform for the second blog).

I would be sad to see this website go, in a way. But in other ways it could be a relief. I’m not even sure people are still reading anyway. Maybe I’m just whispering into the void.

But if I close it, there’s the problem of this web address being Out There. There are links back to here all over the place and on products I’ve sold and then how will people find me? Do I even want people to find me?

I feel an urge for a reinvention, but I have no idea if it’s the right thing to do or a step in completely the wrong direction.

sign off pic

100 Ways I Know I Have Asperger’s Syndrome

100 ways i know i have aspergers syndrome

A light-hearted look at the things that make up my Asperger’s brain.

{This is List #3 in my ‘52 Lists‘ series}

These are things that apply to me personally, but may not apply to you or other aspie females you know. I’m by no means an expert on autism spectrum disorders but I have lived with it all my life and I’m an expert in how it affects me.

Edited to add: At the time of writing this post (November 2015) I didn’t yet have a ‘formal’ diagnosis but I’d had pre-assessment tests (see #1) and had been on the waiting list for 21 months. My diagnosis eventually came through in December 2016. This list was written just as a bit of fun and should not be used to assess whether or not you are on the spectrum. If you have concerns, research it some more and see your doctor.

  1. An expert told me it’s highly likely I have Asperger’s
  2. I love making lists
  3. Love my routines
  4. Don’t like change
  5. I’d rather stay home
  6. Perfectly happy with my own company
  7. Cats
  8. Hate small talk but do it when I have to
  9. Wear earplugs when there’s too many different noises at once
  10. Easily upset
  11. The seams in my socks irritate me
  12. Light touch makes me itch
  13. I don’t understand forgiveness
  14. Struggle with interpreting facial expressions correctly
  15. Can’t always tell when others are being serious or sarcastic
  16. There are 342 tiles in my bathroom
  17. I think other people think I’m weird
  18. I think I’m weird
  19. I’m much louder than I think I am when I whisper
  20. Don’t know when it’s my turn to speak on the phone
  21. I can look you in the eyes while we talk and hold that gaze a long time. With some people I find it’s not so easy.
  22. Thank goodness for Google because I do love finding things out
  23. Taught myself how to build websites
  24. Spent 2 weeks building this website and did nothing else until it was done (inc. much sleeping)
  25. I get in a muddle. A lot.
  26. Getting mentally ‘stuck’ when my routines are interrupted
  27. The round dinner plates need to be stacked separately from the square dinner plates and god forbid you make me a sandwich and do it wrong.
  28. Cats
  29. Eat with fork in ‘wrong’ hand. It works for me, who cares?
  30. I interrupt frequently. I’ll forget what I wanted to say if I don’t
  31. Co-morbid conditions: serious depression, anxiety, possible ADHD and PTSD
  32. Clumsy. Always hurting myself, burning myself, stubbing my toes and walking into table corners.
  33. Difficulty managing time, live in my own personal time-zone
  34. Collector of things
  35. Book devourer
  36. Need to know everything that happened in WW1 and WW2. Everything. But won’t remember much of what I learn.
  37. Realising I’m smiling when I shouldn’t be
  38. No, YOU go in first! I’ll follow.
  39. Fashion? Style? I has none
  40. Nice new hairstyles last about a week before reverting to the ponytail
  41. Mild hoarding tendencies
  42. Like big words, don’t know what half of them mean
  43. Oh look, she used to be in that other TV show!
  44. Oh look, it’s whatshisname who used to be married to that other actor!
  45. Massive celebrity / music trivia bank in my brain. I don’t even know why because I’m really not that interested…
  46. …and yet, I have a crap memory
  47. Difficulty recognising people out of context = if I always see you in a uniform and you’re not wearing it today then I might not realise who you are
  48. Sunglasses always on head outside in case it’s too bright
  49. Bright sunlight causes pain in my eyes
  50. Flickering lights can also be a problem
  51. Remembering all the words from all the songs
  52. Too much noise + bottled up stress = tears + a dark, quiet room
  53. Sensory memory triggered by smells and songs
  54. Details, details, details
  55. Why use ten words when you can use 200?
  56. Visual learning because too many verbal instructions = confusion
  57. I can listen to one song on repeat and not get bored
  58. Gifted at over-sharing
  59. Queen of procrastination
  60. What’s today’s ailment?
  61. Cats
  62. Constantly very busy brain
  63. Overwhelm can make me ‘zone out’
  64. Most comfortable dressing like a male (jeans, hoodie, trainers) but rarely do these days because I’m supposed to be a 38 year old woman
  65. Music is a way for me to escape
  66. Reading is another way for me to escape
  67. The sound of my ‘thinking’ voice has many different accents
  68. Rarely bored
  69. I like counting things (see #16)
  70. Socialising is much easier with alcohol and cigarettes. Alcohol gave me confidence. Cigarettes gave me something to do with my hands. I no longer drink or smoke so socialising has pretty much stopped
  71. Either my hands or feet are always moving. Tapping, twisting, flicking, clenching, wiggling.
  72. I have disordered eating habits
  73. Not knowing if I’ve acted or spoken in a socially acceptable way
  74. Needing quiet time to decompress after a day out
  75. Dreading going places because home is the only place I can be ‘me’
  76. Very sensitive to animals suffering
  77. Struggles with leaving my cat alone (stupid, I know) because I know what abandonment feels like and he’s been abandoned before.
  78. Desperately wanting to fit in, always feeling like an outsider
  79. I can’t let go of things that make me angry or hurt
  80. Everything’s black or white, there is no grey
  81. I believe I have a really fantastic sense of direction until I get us lost
  82. I have huge empathy for animals and people in distressing situations, though I tend to keep it hidden
  83. I’m not like Rainman because I don’t have savant syndrome. Many of us don’t.
  84. I’m not like Sheldon Cooper. Apart from “you’re in my spot
  85. A deep thinker, constantly analysing everything
  86. A vivid, full-colour dreamer, always have been
  87. Need a written script before making important phonecalls
  88. Very immature sense of humour
  89. Have a very strong intuition & judge of character
  90. Wanting to fit in, but wanting to be myself. Knowing it’s not possible.
  91. Highly visual memory
  92. Socially awkward
  93. I get my words jumbled up a lot because my brain works faster than I can talk
  94. Always asking questions: How does this work? What does that mean? Why?
  95. The types of food I like are quite limited
  96. I like each day to look basically the same
  97. Difficulty understanding or interpreting other peoples’ motives or intentions
  98. Some minor difficulties with tiny tasks like plugging in my phone charger
  99. Did I mention how much I love cats?? I feel like I’m very similar to my cat. He’s on my wavelength. Yeah, I know that’s weird 😉
  100. The fact I wrote this massive list.

Zoe Sig