Feeling Sick

It can be tempting to say that I am more autistic than usual when I am sick. That’s not true, of course, because I’m as autistic as I’ve always been. It’s just that suddenly, I’m running on one engine and I become hyper-sensitive to all the messages my mind and body receive, every waking moment. My world-defences are no longer as strong, so my masking and my learnt behaviours are no longer available to me automatically. So, my repetitive behaviours increase, and my social skills decrease too. It’s not easy to deal with as an adult, but I remember quite clearly how much harder it was when I was a child.

When I am sick, all my autistic sensitivities increase, which is logical if you think about it. It takes all my effort, all the time, to manage the world, and most of that is through conscious awareness. Suddenly, part of the systems I rely on are focussed elsewhere, on fighting illness, and on being sick. I know when I am getting sick. Autistic people are either hyper or hypo sensitive, to stimuli. Being the hyper-sensitive kind, I can feel the most minute change in my somatosensory system. I had a shadow of a headache as the first sign. It wasn’t a headache, but I could feel a thing in my forehead. And that day, I was not my usual resilient self. Now, I knew these were likely signalling illness because Middle Child had been sick the past week. Miss ADHD had taken to her bed – a sure sign that she felt awful! If that clue hadn’t been there I would have still felt these sensations, but I’d have had to process what their meaning was – were they mental health related, anxiety induced, or change responses? In any case, I have to process the information in order to understand the meaning and management of this new state of being.

Then, it hit. My goodness, Dear Reader. It’s been a while since I’ve felt so overwhelmed! The symptoms of my illness were nausea and stomach pain, light headedness, diarrhoea, and lethargy. That’s a tad too much information, but I need to separate illness out from autistic response, because I experience both. I am not just sick, when I’m unwell, my total experience of the world alters. For the past few days I have been receiving much more information from the world, like it’s all been turned up to 12. It’s less coherent, too. The husband was playing Barry White in the car the other day, and it had all separated out to my ears. Instead of the whole, lush wash of music, I heard the bits. Conversations are much harder too, with words ticking-tocking into my brain and needing to be decoded before a laboured response is formed. I get so fatigued from all the effort.

I have crystal clear memories of being ill as a child. Most of all, I remember the sense that I was untethered from the world. What grasp of I had of my world – and let’s face it, as an autistic child sometimes that was quite tenuous – slipped away. And losing that sense of control was simply terrifying. You know what – in many ways, it resembles a meltdown. Reserves depleted, outside of conscious control, overwhelming and isolating, they share all the same features.

So, what do I want you to know, Dear Reader, especially if you have autistic children?

  • Being unwell is frightening – The Son says it is like being under attack
  • The onset of illness may be signalled days before by changed/challenging behaviours
  • Sensory experiences will be altered – as if the settings are too high or too low
  • It takes longer for the whole system to return to normal than the course of the illness.
  • This isn’t being faked, or being done to manipulate, it’s as uncontrollable as a meltdown
  • Once recovered, there’s a “re-entry” period back to normal life and expectations which the child will resist – vehemently at times!

That last point needs expanding. Children are coddled during illnesses, rightly of course. But routines are relaxed, rules of behaviour ignored, and all sorts of concessions are allowed. The Rules change. A child can’t be expected to know this is a temporary change. So often, once recovered from illness, there’s a period of re-adjustment required by all. We call that The Princess Stage in our house, because the child assumes they are entitled to special privileges, even though the need for them has passed. When the children were younger that often meant going right back to basics and gently reinforcing usual expectations despite loud protestations. You can’t blame them! Autistic people need to know the ground rules, so changing them, no matter how good the reason, is a fundamental no-no. It’s such a confusing period for a child.

I’m almost back to my regular operational state. Eating is still a little problematical, and words are still tricky, but I’m getting there. I’ll know when it happens though, because there’s an autistic payoff coming. Once I’m well, completely recovered, I am going to feel so good, because it will feel like it’s all new to me, like a mini rebirth. Being autistic can be such a gift!

 

 

 

 

 

 

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Pinky

pinkyfaceHave you had a close look at the profile picture I use, Dear Reader? There’s an awful lot of meaning packed into that graphic. I spent hours looking for an image that would represent my blog and the themes I write about, as well as me, the author. Specifically, I needed an image that, to me, portrayed the truth of being an autistic woman. I could have used a photograph of myself, but as I write about my children too, I wanted to protect their privacy. As I searched I definitely had some messages in mind. But as time has passed, I’ve realized that my choice involved unconscious thoughts about autism I have filed away. I didn’t choose this image in a vacuum, and, Dear Reader, I’d like to share this with you.

Now, I need to be honest here. I do have pink hair! And I am female. So when I went looking for an image, that’s where I started. I didn’t want a photograph of another human being, because that felt like a deception or identity theft. That left graphic images. But my goodness, search the terms girl, pink, woman, or god forbid, doll and the princessy, powerless drivel that comes up is nauseating. Most of the images are passive, sexualized or disempowered. And seemingly endless. None of that describes me, nor does it express my experiences of autism. I was drawn to this picture because I liked the gaze, staring out of the frame, and the emotions that seem to be projected through the eyes. I saw hyper-focus, experience, strength and anxiety, all co-mingled. She has been through the wringer, that lady. To me, the image encapsulated being an Autistic woman.

At the time though, I wasn’t aware just how crucial a face was to my self concept of an autistic woman. Mulling over my choice some weeks later, I realized that I wanted to personalize autism. And then the thought cascade happened and I tumbled onto this thought – the discourse about autism is very often represented by the puzzle piece. Not a human being. Instead, an image of incompleteness and mystery, lonely and alone. A thing that needs to be completed – and in doing so, by being placed into a complete jigsaw, would necessarily disappear from view. It’s an image that isn’t about autism, it’s an image of the impact of autism on those outside. In fact, in 1963 when the first version of the puzzle piece was created, it included a crying (male) child trapped inside the puzzle. I’m not sure if you can sense my rage as I write those words. But that is one of the emotions that underlay my search for a profile image for my blog. I want people to see, hear, feel, what it’s like to be autistic. To feel the intense and amazing joys of the gifts it brings, as well as the costs. But I see those costs as a fair price to pay. Nothing, absolutely nothing, in life is worthy and valued as it deserves unless it has been worked for and paid for. That applies to the endeavours of all human beings though, not only autistic ones. In which case, costs may not be the right word, Dear Reader. The thing is, I often find that words are inadequate to describe autistic experience!

Pinky is utterly female, isn’t she Dear Reader? That was central, as I wrote previously. After all, that’s me. The puzzle piece isn’t female! It’s usually blue or multi-colored. In that case, it is most commonly red, blue and yellow. Nothing feminine there. Now, society often tells women that they are included in collective expressions and images – humankind, mankind, humanity, children, they, yellow ribbons for cancer, white ribbons against domestic violence – but that inclusion is invisible. So it is with the puzzle piece. Blue is code for boys; red often denotes passion, suffering and pain; yellow can mean optimism, but it is also associated with illness and cowardice. None of that matters though. Pink is absent. Girls and women are absent. Do a google search for autism joined with child and boys outnumber girls beyond count. That 1963 puzzle piece was blue. It has taken so long to alter the paradigm that only boys get autism. It’s still very common for women to be told they can’t be autistic because they don’t fit the stereotype of what autism looks like, which is male, unsocial, lacking empathy, rigid and uncompromising. Autism in women and girls looks different – because women are not men! If my experiences as a human being cannot be separated from my autistic neurology, neither can my gender be separated out. Altogther, being an autistic woman was what I wanted to delineate with the picture of Pinky. And unconsciously, it was that horrid puzzle piece that lay deep underneath my search for an image that was meaningful. I have spent years redefining a strengths based approach to autism, both for my children and myself. That’s what I want to share with you, dear Reader, and to do that properly, I wanted to let you into the workings of my mind.

I liked Pinky when I first saw her. She spoke to me about courage, and fun, all wrapped up in wariness and hope. My unconscious thoughts, all those filed away tropes and images and frameworks, contributed silently during my search for an image that would stand for my authorship. But they don’t define me as an autistic woman. No. Pinky and I get to do that, together!

Image: Magalie Henon

https://www.flickr.com/photos/97441331@N05/16299012496/

 

 

Communication: when special interests and obligations meet

I had the best day yesterday! I had to write an essay. It just poured out, the ideas flowed, the words tumbled and jumbled. The essay was for Everyday Communication, a subject for my psychology degree – essentially, it is semiotics. That – defined by the Oxford English Dictionary – is the study of signs and symbols and their use or interpretation. Symbols and signs encompass pretty much the entire gamut of communication – and everything that fits in that word. Semiotics sees everything as texts to be decoded. Which is pretty much how I’ve lived my life, being Autistic. I have undoubtedly spent every waking moment trying to puzzle out what people are trying to communicate, and how to make myself clear to them. To be honest, most of the time I feel like I am speaking a different language; constantly calculating whether I have decoded an interaction correctly, gauging whether I have been understood completely; and then mentally re-hashing conversations to see where improvement is required. It is so tiring, but luckily for me, it’s my Special Interest.

Actually, I did grow up in a bilingual household – with my father being an immigrant and my mother Australian born, the adults around me were fiercely consumed by bridging language barriers. For my father, English was the language of employment and advancement. Improving his was economically indispensable, as well as necessary for family life. To my Australian grandmother, it was a marker of intellect and education. And for my Nonna, my Italian grandmother, her first language was a legacy she desperately wanted me to share with her. That sounds like a big burden for a little girl, doesn’t it? You might assume these are the reflections of an adult looking back and assessing their childhood through the prism of a life-time’s experience, but it’s not. I KNEW that at the time – I was fully aware of it all. My mother often described the look of intense concentration on my face whilst adults spoke to me as a toddler, because I KNEW it was important to understand.

Of course, now I know there was more to it than the experience of growing up with two languages. See, that feeling never went away. I always had a slightly…disconnected feeling. Like I was talking through glass, or my words were muffled. Childhood was the bleakest time. Other kids didn’t speak like me – their topics were so DULL, their words so limited. I was often told that no-one could understand me, that I sounded like a dictionary. The harder I tried, the worse it got. So I stopped speaking outside my home. I mean, why bother?

Things did improve at university. I made my first real friends then. But that sense of uncertainty persisted. And it does to this day. To be honest, I still don’t get it. I learnt All The Words, because that was the only way to make people understand me. It seemed like that was The Rule. Yet, while I choose my words for their exact meaning – the rest of the world is cavalier, ruthless, and utterly careless, throwing words around, willy nilly – and expecting me to keep up! There is so much confusion. Why does The Rule apply to me, but not to them? I waste so much time, checking that I have been understood, that the other person actually hears what I’m saying. Because that’s the whole point! Like everyone else, I want, I need to be heard. It’s only when I am with my autistic tribe that I feel understood. It is such a liberation to find others that use language with the same deliberation of meaning!

So, I use sentences to define a word. Paragraphs to lace sentences with meaning. Whole chapters to get to my point across. Thank goodness the struggle fired my mind, so that communication became my Special Interest. All the books I read filled my vocabulary and tongue to over-flowing, and this brings me such joy. Thus while I rail about the allistic (non autistic) world and it’s limited ability to describe the depth of the world I experience, I still march onward, honing my meanings, attempting to connect, and writing damn fine essays that get me very good marks. Ah, the joy of Special Interest meeting daily requirement. Sometimes, life is just fun.

 

 

 

 

 

 

 

 

 

New Starts

NewStartsHere in Victoria, Term Two is just finishing. It’s deepest winter, but we have just passed the Equinox and I am just hanging out for those extra minutes a day to accrue enough to make a Spring.

In our house, there’s a few new beginnings piling up. The Firstborn had a try-out for a new job the other day. Not an apprenticeship, but a job as a cook. The workplace bullying at the last position had a pretty strong effect.  This job is “all about getting the passion back, mum”. It will be good to see them earn some money, have a routine, and enjoy life again.

Son’s binder arrived in the mail yesterday. He was SO thrilled. Just in case you don’t know, a binder flattens the chest. They need to be well made to be safe for those wearing them. I ordered Son’s from a highly-recommended site, that makes safety a key concern. They’re pretty tight, as you can imagine. Someone may have got stuck the first time he tried it on…

But the newest of the new beginnings is that Son will be starting a new school next term.  He’s been semi home-schooled for the last two years. I found an amazing community outreach program for high school students. It’s called AYCE (www.myayce.com), and is a full curriculum school program where students only attend one day a week and do the work at home.  Best of all, it wasn’t my job to supervise Son’s work. He answered to the teachers, not me. It was a great option.  But Son is ready to something new. More challenging.  So, I had to find a school that would be good for an autistic kid AND a trans one. And I found it.

It’s a small government school in a very diverse locality. We are WAY out of its zone, but trans issues do make a difference. My most basic concern is safety. As I told them when I called, I live in one of the leafy green suburbs in my city that is renowned for the number of schools in the area. But I couldn’t be sure that Son would be safe at ANY of them. See, whether independent, government or religious, all these schools offer exactly the same model of education.  A strict uniform policy, a rigid academic-only focus and pressure to perform. Here’s an illustration of the type of model I mean. It is compulsory for girls to wear skirts, not pants. One school has the option, but peer pressure is such, that in thirty years I’ve never seen any girl wear them! Another school tried to allow them and faced an enormous parental backlash. The thing is, I am quite keen on uniforms as a social leveller. But that’s not what these schools are about. Discipline is focused on tucking in shirts.  Of male hair being less than collar length. On the appearances.  Not on the character of the student. Not on combating the bullying that is rife within school grounds if a child is just, ever so slightly, different. And not on really supporting autistic students.

I know that’s a broad brush-stroke. But, you see, so far, my 3 children have attended 12 of these schools. Oh, they all talked the talk. But only ONE did not damage or harm them. ONE out of TWELVE! One closed its superb student support area because they had “too many” autistic students.  One was the most racist environment I have encountered in my life. At the others, my children faced, among other things, sexual harassment, bullying, segregation, and social exclusion. And at most, I was made to feel that indefinable feeling – you’re asking too much, it’s all too hard, please just GO AWAY. I’ll bet you’ve come across that, Dear Reader.

So, one out of twelve. At this One, The Firstborn flourished. Middle Child is there now, in Year 12, again, flourishing. Here’s a quote from the Vice Principal of Middle Child’s last school – “You know we support your individuality, we really do, BUT THIS IS NOT THE PLACE FOR IT. The One school is for those Other Students. The quirky, the arty, the misunderstood, those damaged by other schools, the individual. They prioritise their students’ mental health above exam results.  And yet, they ENGAGE their students. The school feeds their passions, encourages their interests, and the teachers walk beside the students. It’s an amazing place. But it is only a senior college. Son can’t go there, yet. He’s only in Yr8.

The school that has accepted Son is a fair distance away. But their model is very like that One school.  They have a reputation for being respectful and trying to be supportive of autistic students. And it has a long, proud history of supporting gender diversity. Son will not be the only trans student there.

I thought I was writing about transitions when I started this piece. But instead, this has been the story of my family’s experience of the education system. Which, in our experience, mostly fails autistic students. I used to feel rather alone with that feeling. But the recently tabled Victorian Parliamentary Inquiry into Autism backs me up. There are hundreds, thousands of families with stories like ours. In fact, I made a submission to it.  I SO want to be optimistic about Son going to a new school.  But I am having to overcome reluctance, cynicism, and outright fear to present a brave face to Son. He is looking forward to this new start. And I will not allow my fears to cloud his anticipation.

I love the seasons.  And I strongly connect to the concept of the seasons of life. Spring is the time of new starts, new growth and hope.  And it’s a new start for Son, as he starts his journey in life as a boy.

 

 

 

 

Alone on Saturday Afternoon

It’s quiet.  I’m alone in the house. If you don’t count Dog, Cat and Fluffy Cat. The Husband has taken two of the children out shopping for new shirts.  We are attending a family funeral on Tuesday, so they need to look nice.

Doesn’t sound like much, does it? Just normal Saturday tasks.  But it IS all a bit out of the ordinary. That sort of flew out the window seventeen days, and twenty-three hours ago. Oh, in the scheme of things it’s nothing huge. Not like saying good bye to a dear family member whose life of ninety-two years has ended. He was ready to go. With equanimity. I, on the other hand, was not ready.

I was in the car, driving our youngest to the supermarket.  As I was waiting to do a right hand turn in peak hour traffic, she asked “mum, could I have a binder?” Watching for a gap in the traffic I started to answer that I wasn’t sure if the supermarket would … – and something made me stop. Both driving the car and my brain. Luckily, the light had gone red, so ignoring the beeping behind me because I had missed the light, I turned to look at my daughter.  For what may be the last time ever.  No, that wasn’t the type of binder she meant. And I knew it was time for me to stop talking.  I turned when the lights let me, pulled into the nearest parking spot and said, “this time, you must use your words”.

With The Firstborn and Middle Child, I often parent intuitively.  They are familiar to me in the way my siblings were familiar to me when we were children.  I can hear the unsaid, I can decode their actions into meaning and their behaviours into communication. Not so with the youngest, who is most like The Husband, even looks like the The Husband when he was young. No. With this child, I have always had to think, to watch and study, so I could parent the way this child needs.

From age two, this child, my younger daughter, only wore boy clothes. She wanted her hair short.  She had a pet pumpkin called Jonno, who slept on her pillow and wore sunglasses. She only played with boys. She was SO like her brother! One night in the bath, aged four, she asked me when her penis would grow. Lots of younger sisters of older brothers ask this question, I know. So, I explained. But I’ve always remembered this conversation with extreme clarity. There was something different about the exchange. It was weighty. I remember asking why she hadn’t noticed that her sister didn’t have a penis, because they were both girls – and the memory just stuck with me. But yes, she knew she was a girl.

All three sibs are neurodivergent and approach the world very idiosyncratically. The older sister doesn’t do girly princess, but always wears jeans and shorts. Being autistic IS neurotypical in our home. Friendships are notable only because they exist. Each child has always walked their own path, marched to the beat of a different drum, had to do it their way. My children are NOT boring. Being their mother is challenging and stimulating, and has sometimes has been positively hair-raising. I am quite grey! The husband and I have worked so hard at keeping communication open with our youngsters. And compared to the older ones’ friends, I can say we’ve done okay. They tell us stuff – the type we would prefer not to know, sometimes – and we know who they are. But I was blind-sided by my youngest daughter, that day in the car, eighteen days and one hour ago. I don’t have two daughters and one son.  I have one daughter and two sons.

It’s quiet.  I am alone in the house. The husband has taken our two sons out to buy new shirts.

Autistic Pride Day 2017

I didn’t know there was an Autistic Pride day until the day before yesterday! And now it’s really playing on my mind. There’s been all sorts of comments on social media. Mostly of the “oh, really, there is one?’ variety. But there was one post…

The writer asked why they should have pride in their neurology, and asked whether an Autistic Pride Day drew unnecessary lines that divide humanity. Reading those words made my brain hum. The cognitive wheels started whirring and I did what I always do. Parse, deconstruct and draw the meaning from the words. Cogitate, reflect and ponder. Then finally, systematise my thoughts and my response.

So here it is.

I AM proud to be autistic. Due to heredity, genetically, I could never have been anything other than autistic. My sense of pride was built during a childhood being nurtured and supported as “other”. Boy.  My family was different! Papa was a refugee who came here after WW2. Mum was from the country, but was a woman out of time. She, like many of her generation who were liberated by the Womens’ Movement, would’ve been a lot happier and fulfilled if she’d been born half a century later. Their family, me and my siblings, stood out like flashing red lights in our white bread and comfortably conservative neighbourhood. Nah. We never fitted in! Too bright, too quirky, socially isolated, focus fixed somewhere in the distance and with weird interests, we were on the outer.

But home was different. My mother built a safe place for us, just like her mother had before her. Our interests were encouraged, our sensory challenges accepted as totally normal, and we were taught to read ourselves – in our responses to situations and stimulation, and in our anxiety. We were taught that all of this was just us. And that we were fine.  The rest of the world may be weird, but home, and us, we were the sane centre in a mad, incomprehensible world. Autistic pride honours that upbringing.

Everything I am good at, all my learnt skills – in particular, social and emotional skills – my acquired academic knowledge, and my hobbies and interests, have been filtered through my brain. My autistic brain. And I love my brain. I’m damn smart too. And all of those things are mediated by my autism. My drive to systematise, the ability to deeply focus on details, my drive (compulsion, really) to learn and assimilate information, my extreme empathy – and my creativity – are heightened because I’m autistic. I am SO SICK of the deficit model!!! Yes, my anxiety isn’t removable, my sensory processing is out of whack, and I’ve got quirks galore that Must Not Be Ignored. But I am a better person knowing my autism and learning to live with it. And I’m damn proud!

Now, here’s the nota bene, the coda, maybe even the mea culpa I am expected to add. Autism has it’s challenges. Some lives are closed off from the world because of how autism manifests in some people. All of us struggle at some level with anxiety, social skills and managing the demands of life.  But these are symptoms, not autism itself. In a perfect world (ha!, oh, I know!) we would all have access to the right supports to allow us to function like everyone else. It’s NOT the autism, it’s the response of other people that undermine our abilities.

I am really starting to wonder how far we’ve come if I have to make cogent arguments in favour of autistic pride, rather than just having it!. After all, we live in a world where millions of dollars are being spent on trying to cure autism and autistic people out of existence. That’s why Autistic Pride Day is so important. If autistic people can’t be proud of who we are, how can we argue for our right to exist? How can we fight the cure fantasy and the tragedy line spun by all those self martyred “autism parents” whose children have been stolen from them? This IS our neurology.  It makes me who I am. It makes you, Dear Autistic Reader, who you are. Dear Parent of Autistic Children, it makes your child live, do, be, feel, experience, sense, love and learn differently.  Not less.  Just differently.  I think that is worth feeling a sense of pride.

So – Happy Autistic Pride Day. Here’s to a better one next year!

An Artist’s Eye

 The other night the whole family went out to an exhibition, Van Gogh and the Seasons. Yes, that’s right, the WHOLE family. The Husband and I and the three teens. I can’t remember the last time we managed that.

It was…beautiful. Moving. My goodness, how moving. By the end, I was in tears. I wanted to run out, sobbing loudly. I was so… full. My eyes, my heart. My soul.

The exhibition’s lay out had something to do with that. It wasn’t a large collection of paintings, and we were moved through small corridors into spaces holding two or four paintings at a time, often paired by a theme (beyond the main theme, the seasons). We moved chronologically through van Gogh’s oeuvre, at the same time, stylistically, and finally, through the development of his palette.

In other words, from the darkness to the Light.

I was struck by the thought, was this what it was like for Vincent? Did he go from the darkling, monochrome landscape of The Netherlands, to the stunning, exultant, sunlight of Provence? Did his eyes ache? His soul lift? Because that’s what happened to me. I walked from sombre paintings, into the sunlit windows of others, my soul rising as the colours intensified and I moved through the passageway the curator had laid out. Only ten years of paintings in all.  And it was only in the last a three that the paintings he is so famous for were created. And the detail that he was driven to represent exploded into visions that still stun us today.

It was A Patch of Grass (1887) that literally stopped me in my tracks. The picture here is such a dim, dull version. In the original, well, the sun sparkles. My eyes were transfixed, moving up and down the painting, as the brush strokes of colour made me want to wade into that field and see and smell what was only hinted at. The Firstborn stood with me here, and then drew me to a painting of a tree, it’s detail delineated by only a few brushstrokes. Yet it commanded attention. “He’s so autistic”. The Firstborn has alexithymia (the inability to recognize one’s own emotions and to express them, especially in words, Oxford Dictionary), so observations like this really get my attention. This was emotional recognition. And because that’s what had been bubbling away in my mind.

Of course, there’s no way of ever knowing. But The Husband and I had shared a look when we were watching the video at the start of the exhibition. Van Gogh’s brother Theo was quoted saying that Vincent was often unfeeling, putting his obsessions ahead of others’ feelings. And then, for me, I could see it in the paintings. Innovation only occurred hand in hand with a change of location. As if transition of the body was essential was for transition in the palette. And it’s the last 3 years, when van Gogh went to the South of France that the revelation occurred. Light, the sun, yellow, are almost throwing themselves off the canvases at the viewer, the thick impasto of the oil paint, texture creating form. I felt as if I was being yelled at “Look at what I can SEE!”. The sudden, glaring change, after years of refusing to lighten his palette, against the advice of Theo, an art dealer, and of his teachers and mentors. I think the Light entered van Gogh’s soul. In the South of France, his eye became telescopic, filling canvasses with images of a whole created through the lens of detail. If I was filled to over brimming, just looking at these works, how did Vincent feel?

Three years.  That’s all the time he had left. He was so driven. At one time, he painted seventy pictures in seventy days. He ran out of materials. He ran out of himself. So he left us what his eye saw, his hand made, and what he was driven to create.

As I left the exhibition, crying quietly, I felt that I had had a glimpse into a kindred soul.

 

My Conscience Applied

I hope there won’t be too many typos or other errors in this piece. But I want to be authentic today. And deeply honest.

The last couple of weeks have been not been good for me. In fact, a whole slew of words is needed to describe the depth and width of “not good”. Deeply distressing. Vexing. Distasteful. Repugnant. Disgusting. Depressing. All of those, and that still doesn’t cover every nuance by a long shot. All of it – all, every single bit – has to do with being autistic.

Exhibit #1. An essay on “educational” approaches to teaching autistic children. Great topic! I’m not being sarcastic, either. It’s a very interesting subject. I know a lot about it after all, what with having 3 autistic children to bring up. We had to research these approaches, which meant reading deeply and widely at the academic level, and accessing peer reviewed academic articles and research.  That means I had to study Applied Behavior Analysis, ABA.

Dear Reader, that broke me. 

Exhibit #2. A thread on social media. A site for parents of autistic children. ABA the topic. An autistic writer explained why they found ABA problematic. Cue indignation, wrath and offence. By parents, allistic, for the most part. They demanded to know who of us autistic people had ever undergone ABA. Shouted that we were too high functioning to be like their child. And claimed we wanted autistic children to be left in their “natural” state.  Defended ABA as “not like that anymore”.

Given I was already broken, Dear Reader, I hesitate to describe my state. Shattered? Traumatised? Overwhelmed? I truly don’t know. I barely dipped my toe in the stream of discussion. A friend was much braver than I. She fought back with verve and power. Yet, I know she was left feeling as hurt as me.

As an autistic person, as a parent to autistic children, and as someone who wants to work with families in the autism field, ABA broke me. I don’t know, do you need a warning dear Reader? I am going to polemical. Controversial. I don’t care. I prefer to be honest and true to my own sense of identity.

You know, about 70 years ago, there was a huge sea change, led by Dr Benjamin Spock, in the approach to parenting. The most salient example is toilet training. Before Dr Spock became popular it was considered appropriate that children be toilet trained as early as possible, preferably around 18 months. This is before a child is developmentally able to control their bladder and before they have the adequate brain development to understand and comply with what their parent is asking them to do. They DID know this at the time, by the way. So, toilet training was done the same way dog training is done now. The trainer created an association in the child’s mind between discomfort and emptying bowels and bladder. And then, if the child was lucky, rewarded the compliant behaviour. Feed child. Sit child on potty. Reward child for weeing. Punish child for non-compliance. Wet undies? At best, leave child in soiled clothing until they learn to associate discomfort and nappy rash with causing said wet undergarment. At worst? Not allow child to leave potty, for hours if necessary. Slap child, denigrate child, humiliate child. I clearly remember my grandmother telling my mother that this is exactly how she toilet trained my aunt. That was when my youngest sibling had reached this developmental milestone. My mother used the approach common today, of which my grandmother was heartily scornful. Nowadays, all parenting experts and books recommend being led by the child. Wait until the child is ready, and shows the beginnings of understanding the link between bodily sensation and the desire to urinate. Reward the child for success – NOT compliance – and NEVER punish the child for errors of timing or comprehension. On average, most children are toilet trained by about 3 years of age nowadays, much later than 18 months. This child led approach is considered to cause the least amount of harm, which includes children developing control issues around their bodily autonomy.

Did that sound familiar, Dear Reader? In 2017, we have a “treatment” for autistic children based on the EXACT same principle as dog training and coercive toilet training.

In order to be crystal clear, please note the following. ABA is “devoted to developing procedures which will produce observable changes in behavior”.  The aim is to change both voluntary and involuntary behavior in the autistic child, so that includes, thoughts, emotions and other covert cognitive activity, not just what we would normally think of as behavior – the doing of stuff by a person. It uses principles very familiar in psychology, classical and operant conditioning. These are the EXACT SAME principles used in gay conversion therapy, because the same person was involved in the development of both “treatments”. It is EXACTLY how dogs are trained.

This “system” cannot be defended by saying “but my child enjoys doing ABA”, or that “it’s not like that anymore”. Oh, yes it is. That is how it works! My dog enjoys me training her. She has learned to please me. To earn a reward. To beg for praise. She knows nothing else, because she is a dog.

But children are not dogs. I grew up in a family that was familiar with difference, the other. In fact, some family members were very other, and I’m not referring to sexual orientation! I can account for 4 generations familiar with what is now called autism. But my family embraced that otherness. I don’t know how they did it. I don’t know when someone decided that rolling over at age 2 was normal for this group of people. That what we now called stimming was soothing and not to be removed, just kept for the safety of home.  That some children didn’t speak until 5, or older, while other babbled intelligibly at 12 months – and both were achievements. That eating white food was perfectly acceptable. Generations of children, and very many of my generation of cousins, went to school very late, or very early. But that was seen as A Good Thing, because that was at their pace. There are stories of family members that never left their homes, were mute in public, banged their heads, could not wear buttons. Oh, and were overly interested in special topics. Some never worked (or work) a day in their lives. Others were/ are teachers, doctors, lawyers, public servants, chefs, nurses and stay at home mums. Not one of us needed ABA to fulfill our “full potential”. We were reared with assistance when necessary, encouragement to attempt the anxiety inducing, and trust. Trust that we were capable. Trust, that when engaged, we would find our way in the world, and the place we were meant to fill. Trust, that we would reach developmental milestones when we were ready. Not when the maternal health nurse said we should, not when school tried to make us, not when “friends” said we should.

I honestly don’t know where that hope came from. But when my son was born, with serious sensory issues, including fear of the dark at day 4, when he woke screaming after 45 minutes of sleep for the first 10 months of his life, when he breast fed every single time for 30 minutes on one side and 30 minutes on the other, for every feed for 14 months, when he couldn’t touch sand at the beach or grass in the garden, I knew he was one of us. One of those others that we were, and that he would need me to teach him that that was not ok.  No.  I had to teach him that it was GOOD.

And that, to me, is the most soul-destroying aspect of ABA. That it does not teach acceptance and self-love to children. 40 hours a week – 15 hours, honestly, it doesn’t matter how many hours – of teaching a child that their thoughts, emotions and words have to be altered in order to be considered compliant teaches self-hatred. And brokenness. And deficit. Training a child to reach milestones in development is forcing them to do things outside their timeframe. It has been well established –  and I saw in my own childhood, in my siblings, and in my children’s – that autistic children DO reach those milestones. In their own time, when they become engaged. And when that happens, that knowledge has been learned forever, and is capable of being generalized. In other words, they learn that knowledge well enough to apply it in different situations and with different people. Reputable studies show that this is not the case for information trained by ABA or it’s little sister TEACCH (Treatment and Education of Autistic and Communication related handicapped Children).

Once, disability was viewed through the medical model – that something was organically wrong with a person and that they needed to be changed. Nowadays the social model of disability understands that a person is disabled not in them self, but by the way society views them, creates equitable adjustments and the ability for them to reach their full potential. ABA grew out of the medical, personal deficit, model. And is still firmly mired in that same model that has been discarded by most of public policy, the medical and caring professions and education.  ABA has had its day! In conscience, to be true to myself and my children – and all autistic children – I cannot, in any way shape or form, accept or condone ABA.

 

 

For those of you who would like a balanced and measured discussion of ABA see the link below. It is from Spectrum News, a reputable group that disseminate information and research on autism related subjects.

https://spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/

 

 

 

 

Sensory Heaven

float.jpgRecently, life has been a bit too exciting for this Autistic Miss. I’ve had to put some strategies into place so that I can keep my mental health chugging along regularly, rather than deciding that It’s All Been a Bit Too Much and we might need to have a holiday in the Safe Place. Along with my usual strategies, I’ve started having floatation tank sessions.

Yes! I’ve been doing Something New, which is a bit of a challenge for an autistic person at the best of times! A friend had recently discovered the experience and had loved it. Actually, she was as enthusiastic about the whole experience as she had been when she got her new puppy! She was quite the convert. Anyway, the seed had been sown.

A couple of weeks later, wandering disconsolately around our nearest Temple of Consumer Adoration (i.e., the mall) I passed a newly opened business – with a great big sign advertising floatation sessions. Honouring the whim, I went in to see if I could try it then and there. The universe being the tricksy place it is, there WAS a session available! It might sound strange that a person who thrives on routine could allow impulse to pull me towards a new experience with trust rather than panic. But I’ve been practicing for decades. With gritted teeth and rigid with fear to begin with. But now, after, ahem, many years, I DO have the hang of it.

What was it like? I hear you ask, Dear Reader. My answer is – blissful. In fact, blissful beyond my wildest autistic dreams! It was Sensory Heaven. For one whole hour, the world went away. There was silence. No lights. Warm and safe. A sheer delight.

The picture shows what a float tank looks like – a great, big, boiled egg. Inside, it is filled with blood temperature water full of Epsom Salts. The water is so buoyant you couldn’t drown if you tried. Naked, you enter and pull the lid closed – with a bloody great handle, which re-opens at the gentlest nudge. There are soft, coloured lights that may be left on if one wishes. But best of all, there is this HUGE red emergency button that opens the hatch and summons help if needed. I have to say that it was that last detail that truly made me relax!

And relax, I did, for a whole hour. At first, I was so taken by the silence that I could only focus on that one detail. Water lapped, but quietly settled to stillness as my body came to rest in a supported, peaceful float. Then, there was the darkness. So restful to have eyes opened or closed – and yet see nothing, no chinks of light, just utter blackness. My senses were completely at rest. I could feel my breathing, and that was all. It was perfect rest. I don’t know if I have ever experienced that before.

As  my body floated, so did my busy mind. Like my body, my brain slowly stilled and it rested too. I didn’t fall asleep, and I didn’t dream. Instead, thoughts, like clouds drifted past. They came into view, yet moved on without taking me with them. Sweet repose.

Ten minutes before my time was up, music started softly, and the lights came back on. I let myself out of tank the using that wonderfully reassuring handle and showered and dressed.  Outside, there were comfy seats and water to drink, and time to slowly re-enter the world. I felt as if I had just had a full body massage – but without being touched. My whole body was relaxed and calm. There just aren’t words to explain the restful feeling I experienced.

Since that first time, I have floated twice more, including today. Each experience has been different – but all have that shared that blessed sense of relief. Of not being constantly assailed by the world at best, assaulted by it at the worst.

This is a new addition to my armoury of self-care. I don’t think I could recommend it to everyone, especially, not other autistic people. We are so sensitive to the world. What works for me could well be torture for someone else. But, it’s an option to consider. Who knows, Dear Reader, it might suit you!

 

 

 

 

 

 

 

 

 

 

 

Happy birthday?

Birthdaypost          One night, some time before he turned 4, The Firstborn was agitated and upset. This was a long time BD (Before Diagnosis), but I had already worked out that this child did not do anticipation at all well. SO, we chatted, and I let him work towards what was on his mind. Which was that he was scared about turning 4. Because he didn’t know how to be 4. It was a classic light-bulb moment! Of course, he didn’t know how to be 4! This child, who needed every single new thing – transitions, sensory alterations, damn it, even weather changes – signalled and made concrete, could NOT imagine what was ahead of him. I was SO relieved that we’d worked it out. As he snuggled down, I explained that was why birthdays only come once a year because you got to practice being your new age. How could anyone know how to be a new number on the first day? I asked him if he felt he was good at being 3, to which his response was a resounding YES! I reassured him, that as the year went on he would get to be so good at practicing 4 that his little sister would want to catch up. Which I hoped meant he’d be happy to turn 5 the next year to keep one step ahead of her.

The Firstborn slept well, developed into a marvellous 4-year-old, and we had the same anxiety again the next year. With both him AND his little sister. And with our 3rd child. I was reminded by of this by a video by Princess Aspien (https://youtu.be/z1wgGlXS7pM). In it she describes exactly what all my children have experienced. For all of them, aging and all it’s unknown qualities, cannot be visualised from experience and is frightening. Well. Terrifying really. I’ve come across this phenomenon in Autistic children quite a few times as my children have grown. At the special school The Firstborn attended there was a lovely boy who regressed from the age of about 11. Slowly, nearly every ability related to communication slipped away. His anxiety increased to dangerous levels, and just before his 13th birthday he became suicidal. It was a terrifying time for him and his family, and all those whom cared for them. And then, on the day of his 13th birthday, there he was at school – talking, interacting, engaged. Happy! You see, he was still alive. When he got up that morning, he could explain to his parents that he had developed the idea that when he stopped being 12 he would die. Because that was when childhood ended. Obviously, they asked why he hadn’t tried to tell anyone what he was feeling. And his answer was that he didn’t know, or have the words to use.

Very often, our children cannot visualise concepts that they must endure. Think of the issues many of us have with toilet training, transition to kindergarten, school, high school. It’s my own experience as an Autistic person that if I cannot visualise a new thing/event – and for me, it IS a visual mind picture – all I can see is a black hole. Literally. I see myself walking into the void. Nothingness. Imagine the fear on my very first trip to Europe – in the years before the internet and iphones. I fainted on the plane. I threw up on arrival. I still remember the out-of-body experience when I landed. My body – me – was standing on previously non-existent ground. The experience was THAT intense.

I am fortunate. I didn’t have this fear of birthdays and growing up. In fact, I was the opposite. I was never a child. It was such a relief to have my body and the world match my own self perception as a human being! But I had to learn how to manage it in my children. So here are some suggestions, based on our family’s practices –

  • Be sparing about referring to up-coming birthdays. For a while we had to code word them as “natal festivities”!
  • Include the child/ren meaningfully in any planning of events, guests, etc.
  • Follow your child’s lead. If they talk or respond anxiously about birthdays, see if this fear is part of it, and reassure them about time to practice. Make opportunities for discussions to arise.
  • Don’t refer too far ahead to new stages, e.g., kindergarten – or if you do, allow room for uncertain feelings and ambivalence about change. Don’t keep emphasising how “big” “responsible” “exciting” this new thing will be. They don’t know that yet!
  • NO surprise presents! Ever. We learnt this one the hard way. Get them to tell you what they want. Mind you, make sure they are realistic. We could not buy a German Shepherd dog every time it was requested. Redirection was required. And an appropriate parental response.
  • No wrapping on presents. No envelopes on cards. They might hold booby traps. Well, that’s what you’d have thought watching the way our children approached such items. Make sure family and friends know this. There are some adults who get disturbingly upset if their gift is not received with rapture…
  • Caveat! – that line “if you’ve met 1 autistic person…” – none of these suggestions might suit your child. On the other hand, just talking about how our children think such unusual thoughts might ring a bell, and you’ll notice something new.

And my final words of wisdom

Watch Princess Aspien’s video. Here’s the link, again, because I think it’s a Damn Fine Resource (https://youtu.be/z1wgGlXS7pM). Such an amazing young woman, who understands herself, and is learning to grow up – her way. She’s also a bit of a reminder. It’s so easy to get caught up in the day-to-day routines and crises and bustle that parents can forget an important point. Autistic children grow up – into Autistic adults. Helping them now, when young, to understand how they think, what they feel, and how they ARE gloriously different, all goes toward giving the tool they will use as adults. Just like Princes Aspien.

 

 

 

 

 

Being Lost

I am feeling lost. I have felt this way often, in the course of my life. I wouldn’t say that Lost and I are friends. But we do know each other very well. This is how Autism seems to manifest for me, periodically. Usually at times of transition, which are quite stressful to the Autistic! The thing is, that now I have to work out what is going in in Lost Land, and then decide whether I will be ok if I use my tried and true strategies, or if it’s more serious and I need professional help.

I am usually quite good with emotions, but they do require processing, assessment and comprehension. I process emotions as shades of grey. I expend a lot of mind energy sorting emotions, mine and others’, into shades of grey. A whole, endless spectrum of greys. Sorted, shade by shade into a color chart that exists in my consciousness. Which is constantly updated, re-filed and re-organized. There is no black and white – ever. You know that wall of paint samples in hardware stores? That’s a very accurate visual representation of what I mean. But, all grey. And exhaustingly, constantly being enlarged.

As I’ve grown up, I’ve had lots of practice with Lost, and have developed a system that seems to be functionally effective. I make an inventory. I imagine myself in circle, and slowly turn around to observe everything around me. What’s happening, and how it has the power to affect me and/or my family,

The body first. What am I feeling? I am struggling to comprehend the messages my senses are sending me. Am I coming down with the flu? Reacting to wearing a new dress made of an unfamiliar fabric? Am I hungry?  Or, am I just “overwhelmed”? Well, yesterday, I had moments of flu-like symptoms. My head was spaced out. My arms and legs went all wobbly and felt untrustworthy. I got home and had a nap. That helped. So I must ask, am I coming down with something? After checking with The Husband and the 2 of the 3 teens who have been unwell recently it appears not. Their symptoms were quite different. But that was fleeting. What is lasting is this slight bodily hum. I can feel all of me, all the time. It’s draining to be so hyper-conscious, so I’m tired too. Getting the dinner on each night seems like a mountain to climb. Yet I love cooking. It’s my daily mindfulness practice. Instead there’s this sense of inertia.

Result of body scan: we’re running too high.

Next, I review my environmental situation, specifically in relation to things I have to DO – what’s going on in day to day life; the routine, the new, and the impending.

I’ve just started the new trimester at university. On Monday, Son starts a new school after 2 years of homeschooling. The Firstborn’s psychiatrist has diagnosed a co-morbid condition AND explained that the change to vegetarian cooking at home is causing distress, and that the 2 of us need to create a routine to help The Firstborn manage better. Meaning that for a second time, I need to revise how food is prepared and served to my family of autistic teens. Then there is Showtime. This is a musical production that our family has taken part in for the last 8 years. The next month includes a full rehearsal schedule and a run of 9 performances. Son is in the cast. The Husband is in the band and is prop-master. They need dinner ready to eat at 4.30 every afternoon. I am the only driver left in the house to act as taxi for The Firstborn and Middle Child who have part-time jobs and active social lives.

Result of activities review- er… a few!

The third step is to evaluate all the emotional circumstances swirling around me. Given that no man is an island entire unto himself, no woman who is a mother is immune to the emotions of those in her home.

Let’s do this in birth order shall we, Dear Reader? Stating with The Husband. He’s such a good man. Self-employed, showtime eats into work hours and energy for him. We will barely get any time to talk to each other for the next few weeks. That does get lonely, for both of us. The Firstborn. He is just recovering from his 2nd depressive episode in 6 months. It really is an understatement to say that he has been very hard to manage. Plus there’s that pesky new co-morbid condition. Mind you, while I feel guilty for not picking it up, it does make past events much clearer. Middle Child is doing her final year of school. Well, that’s self explanatory! She’s a bit of a perfectionist  (hm, I wonder where she got that from?), so while she’s doing all the things she is supposed to, I am watchful of the pressure she is putting on herself. And then there’s son. Who came out as trans 5 weeks and 1 day ago. As I mentioned, he starts a new school on Monday. With no transition, the learning support teacher on leave, and the one person they know being away the first day.

Result of emotional overview – yikes!

OK. So that IS a lot on my plate. It would be for ANYONE! But as autistic person, I can’t process this all like “anyone ” would. None of it is automatic, or instinctive. With autism in the mix, it makes sense that my entire system is in overdrive to keep up. My senses are working overtime, my body going along for the rollercoaster ride, while my brain is working step-by-step, act by act, result-by-conmsquence, through every single permutation of all of this.

But I’ve got this! I’ve done this so many times – the full full review and body scan, the intellectual survey that leads to understanding. I WAS lost. I’m not anymore. Because all my abilities – honed by autism, matured by age, practiced through life, and supported by self awareness, will help me get through this. This is my life. Actually Autistic in every sense.

 

Misdiagnosis or Misadventure

 

UnknownI was diagnosed as Autistic at the age of 52. Oh, I had worked it out well before then! Like many women, the realisation became clear when my oldest child was diagnosed at age 11. I have a clear memory of being in the car with him as he had the routine post school meltdown. “I’m a freak, he cried and yelled. It’s funny. I was so calm. “Am I a freak? I asked him. “Really. Do you think that I am?” He was so shocked! I went on “because you are just like ME. Like my brother, like my mum and my dad. Are we all freaks?”. That stunned face, silent, still sits in my mind. We sat in that car for ages. And I explained how normal he was to me. How familiar. How I understood his manner of seeing, thinking, being. That yes, life would present challenges, but I was ok. Wasn’t I?

Well. I’m ok NOW. Only, it took 22 years, from the time this darling boy was born, before I reached my safe harbour, my autism diagnosis. I had a pretty typical diagnostic trajectory for autistic women.  Mental health issues in my teens. First diagnosis – anxiety. No, really? I had already worked that out. And I carried on. The came Post Natal Depression. The moment my boy was born I stopped sleeping. And he didn’t sleep much either. 45 minutes at a time, for the first 10 months, punctuated by his agonised screaming.  I got up every morning and sobbed as my husband left for work. My doctor told me I was “just” tired.  Because I was “too sensible to have Post-Natal Depression”. This meant that during my second pregnancy I had Ante-natal Depression.  And 5 months of hyperemesis – where I vomited day and night without respite, except being hospitalised to rehydrate. This couldn’t possibly be anxiety related, according to the doctors, it was “just” morning sickness. My darling daughter was born and things just got worse. The house was perfection. I cleaned obsessively. The children were routined within an inch of their lives. I barely ate. I started throwing up. And having the most dreadful moments of…, well, horror. A few times, I had to call an ambulance, because it wasn’t safe for me to be home.  And yet, not once was I told that these were panic attacks. Then came That Day. When I called an ambulance, got to the hospital and demanded a psychiatric assessment. By this stage, the baby was 4 months old, starving, because I was emaciated from being unable to eat and all the vomiting and I was very, very scared of harming myself. The emergency team diagnosed Post-Natal Depression within moments.  I was so unwell that the baby and I spent 7 weeks in a psychiatric mother and baby unit. They saved our lives. I started therapy with a psychiatrist, went on meds, and had ongoing, weekly support groups. And received Diagnosis Number 2 – generalized anxiety disorder (GAD).

As my 2 darling children grew and I saw my psychiatrist weekly, we noticed that I wasn’t recovering as expected. I seemed to not really fit the “usual” pattern. So along came Diagnosis Number 3, Bipolar Disorder. I went onto lithium, and … nothing. No better, no worse, just the endless same, not quite right. Anxiety, sensory difficulties, occasional auditory hallucinations, and difficulties with communication. I came off the lithium. We had baby number 3. I had 5 months of hyperemesis again, and later, the predictable PND, and spent another 7 weeks in hospital, back on anti-anxiety meds. I was so relieved. Compared to the lithium, they did help me cope. My sensory challenges reduced, and I didn’t get so het up about getting things right. Having things “just so” stopped being an almighty obsession. Doing Cognitive Behavioural Therapy (CBT) and Mindfulness at my weekly support group helped a lot too.

So, life went on.  Hectic life, with 3 incredibly quirky, sensitive kids, who weren’t coping with the world around them. Bright, inquisitive, but socially unusual children. And that’s when the diagnoses started. In birth order, one after the other. Light bulb moments. One after the other. Where each child seemed to come into focus – because they had entered my world. I’d often (always) felt a failure because my children didn’t respond to the parenting the world was telling me to do. But they responded – and thrived – when I used my mother’s methods, and her mothers. When instead of forcing them to do what they were supposed to, I listened to my instinct, and did what they needed. And when I accepted that there was a name for what my family of origin had been, and that fitted me. Autistic.

I had another bout of mental illness at menopause, about 5 years ago now. Only this time, when I had therapy, I had something to contribute, that altered how my therapists worked with me. I disclosed my children’s’ diagnoses, but I didn’t yet claim it for myself. Oh, in my own mind and heart, I had no doubt whatsoever. Instead of fighting the anxiety, I was taught to work with it. To accept that anxiety was an integral part of me and to manage its effects on me, and to learn to live with it. With the right meds, the right therapy, and with my own secret self-knowledge, that last recovery was the most successful. I have never felt so well in my life. Because that’s when I started to treat myself the way I treated my children. I realized that sleep was essential – my down time. I started to honour routine and habit in my life, rather than fighting them. I became conscious of my sensory challenges. All those things I had taught my children to do, I applied to myself. And life has never been better.

As a treat to myself, a couple of years ago, I saved up the money and booked an appointment with a specialist in the female presentation of autism. I received my diagnosis. I do not have bipolar. I do have a mood disorder, which is defined by having had multiple episodes of depression. And I will live with anxiety till the end of my days. But that’s because I am autistic.

The obvious question is – does it matter that autism was never suggested, investigated or diagnosed? Well, yet it does. You see, life has been a little too exciting for me recently. One child is doing their last year of school, one has had depression, and the 3rd came out as trans. I’m not feeling so good, mentally. In fact, today I saw my psychiatrist and told her I am a bit worried about myself. And we discussed my autism. Not depression. Not anxiety. We talked about how I have had too many transitions to manage at once. To work through, process and synthesise into new realities. We looked at my need for down-time to do this, and how to make room for it.  She and I discussed my current sensory disturbances. My body has felt encased in mud and that I am wading through the world.  Feeling the air thick and damp around me, slowing me down. Separating me from…stuff. And the humming in my ears. Which I sense as mind working overtime.  Trying to catch up with my new realities.

In fact, knowing I am autistic made an enormous difference at my appointment. I don’t need my meds changed. I don’t need to go to hospital. My doctor confirmed it. I need time and space. To respect the messages from my body and mind. To let my autistic brain do its work and find a safe way for me to be. This is knowledge equalling power. Power I never had, when my autism lay hidden, and its effects unknown and uncared for. Because my doctor recognizes that I am autistic, I know I will recover quicker than ever before. I am autistic. And yes, it does matter.