A Short One

I have just been out for a walk.

This might not seem like particularly startling news. Especially when I tell you that my walk was just 2 kilometres long and I was out for under 20 minutes (the 2km actually took 18 minutes, 24.7 seconds).

The fact that I know that much detail about my walk (at an average pace of 9:12 per kilometre) will tell those in the know that I didn’t just amble round the block randomly, but I took my Garmin (running watch) and measured time and pace and so on.

I also wore my running shoes. A pair that have done a couple of marathons with me.

All this might seem rather irrelevant, and a slightly strange blog post. Maybe so.

But it is important.

Because it is the start of returning, properly, to life. It is a tiny bit of something approaching “normal” in this huge sea of autism and mental health and newness and unfamiliarity.

Aside from one short run in January, I have not run since November. Granted, I didn’t run today, but I took the first few steps (2043, according to my Garmin) towards it. Back in January I was making a desperate last-ditch attempt to be well enough for my spring marathon (and ultra) season, but I really wasn’t well enough, and quickly gave up.

So now I have abandoned all races until at least the autumn. And I am starting over. And I am making it as easy as possible to start over.

Because at the moment I am still struggling with inertia, massively. I’ll write properly about autistic inertia sometime – it’s the feature that means our brains are very good at persisting with things, often for hours on end, but are terrible at starting and stopping or switching tasks. The effort needed to start something is huge, and takes a lot of energy.

Furthermore, I still have huge anxiety when leaving the flat. My senses are still in overdrive from the burnout. The world is still loud and bright and full of so much information that I feel like my head might explode. Previously I would have used energy to mask these feelings, consciously blocking out the input to my senses – doing so for years has both left me too exhausted to function and has been seriously detrimental to my mental health.

So, in as far as I have any control over things, I am determined now, to be me, and not to use that energy unless I absolutely have to for survival. Furthermore, since the energy to mask ran out I can’t do it. I don’t have the resources to act any more, so I have to live as I am, now acutely aware of my heightened senses, but also no longer making myself be strong, no longer forcing myself to block them consciously, even though they are sometimes overwhelming.

Couple all that with the anxiety I’m still getting just leaving the flat, and you’ll begin to see why going out for a walk was such a big deal today.

And so my strategy was to make this first outing as easy as possible, so that all my energy could be focused on getting out of the flat, dealing with the overwhelming light, sound, smells and so on, and overcoming that initial hurdle of actually starting anything at all.

So no running clothes yet (there’s a sensory issue with fabrics touching my skin which I will have to deal with), and not yet backpacks or belts or other such kit. Daytime clothes, my familiar handbag for keys, phone, and inhaler, but just two relatively easy adjustments to my normal “leaving the flat” gear – my running shoes and my Garmin.

Tiny tiny adjustments. Minimising the “difference”. In order to get out at all soley for the purpose of exercise, without the pressure of an appointment or another person expecting something of me.

And a “workout” so easy that it didn’t tax me physically. I know I can easily walk 2 kilometres, so didn’t have to put that part of it into the pile of obstacles in my brain, didn’t have to factor in a tough training session when persuading myself just to go out at all.

And I took a regular route that I run often, a known 2 kilometres. In the early afternoon when most people would likely be at school or work, and I’d have as little chance of encountering people as possible.

And so it happened. Starting over. Picking up fragments of my old life, the life that fell to pieces when I discovered I was autistic. The life that almost ended in December. The life that I now have to rebuild, differently, readjusting now that I know better what will help me to stay well.

The absence of either job or offspring in my life, coupled with my extreme burnout and wildly fluctuating moods, has meant that there has been very little “normality” of any sort during the last six months. Learning about autism and my being autistic has been fascinating, but I am also worn out by it – my entire life has been consumed by it for months. I need to ease off – my head is full.

It’s time to reclaim just a few bits of “normal” life.

Slowly, gently, with space in between to recover.

A couple of kilometres at a time.

Uncomfortable

Like a pendulum
Swinging wildly,
Undamped.
My mind has still
Not settled.

Where I fit
Into this new identity
Is still unclear.

I talk to people
And many of them
Expect answers,
Where I still have
Only questions.

Some days
There is despair
And a feeling
Of life being limited
Permanently.

Some days
There is hope
And a feeling
That life will improve
Substantially.

But where I fit
Into this new identity
Is still unclear.

I am suddenly forced
To confront issues
I had discarded
Years ago.

Things very very uncomfortable.
Offspring. Female identity.
Neither of which I possess.
Autism forces these things
Into my consciousness.

Not to mention
My own childhood,
A door I had long since closed
Forced open for diagnosis.

Can open.
Worms everywhere.
Wriggling around,
Demanding attention.

The past
Begging to be analysed

But where I fit
Into this new identity
Is still unclear.

There is no stable backdrop
To my life.
Everything wobbles.
Precariously.

And my mind
Is trying to alter its perceptions
Of who I am
But progress is slow,
Like an ocean liner
Doing a three-point turn.

As I try to plan
For a changed future
I desperately search
For familiarity
And stability.

Autism is exciting,
Enticing, shiny, new.
But this very newness
Makes it also feel
Alien and unfamiliar.

I have never fitted
Into a community
I am not used to being
“Part of things”
As soon as I become so,
I feel uncomfortable
And withdraw…

Where I fit
Into this new identity
Is still unclear.

My past needs
Reframing.

My future needs
Replanning.

There is uncertainty ahead
How functional will I be?
What can I try to do?
What do I want to do?

Preserve the old
Familiar interests
(accepting my limitations)?

Embrace the new
And shiny interests
(accepting intimidations)?

I ask myself
And many times
I search for answers,
Where I still have
Only questions.

Where I fit
Into this new identity
Is still unclear.

My mind has still
Not settled.
It swings wildly,
Like a pendulum,
Undamped…

Where I fit
Still
Unclear

Unknown

Uncertain

Uncomfortable

Eight Weeks On

So, eight weeks on from my diagnosis, I’m once again pausing to observe the passage of that time, and, understandably, reflecting on how life has progressed since I sat in the room at the end of a five-hour interview and testing session and was told that I clearly fulfilled the criteria for a diagnosis of autism spectrum disorder.

Eight weeks ago today I was relieved and exhausted in almost equal measure, having been officially told the news that explained why my life had been so incredibly difficult and I had failed, consistently, to live up to the expectations and demands that that so many people (including myself) had for me. I had reached the end of the process of assessment, and the end of the “old life” and had, finally, got to a point where I could start to rebuild something new, gentler and more forgiving.

Because I’d already read so many other accounts of how things had been for other people, and because I’ve been around long enough to have experienced a lot of ups and downs, I was under no illusion that receiving my diagnosis would magically transform my life into some fairyland, or that I would miraculously be able to access beautiful support or that all the ghosts from my past would reappear and apologise for all the years they’d told me to work harder, do better, or whatever, or that they’d explain that they really didn’t know how difficult life had been and they wished they had. I was, of course, right to hang on to a healthy skepticism that things would miraculously “get better” – one advantage of being a bit old and a bit logical is that a belief in magic and sparkles and fairy dust is not on the agenda. This process of readjustment to my new knowledge and rebuilding my new life is not going to happen overnight, and nor is it going to happen at all without considerable effort from me.

There is also the burnout to consider, and my mental health in general. At my follow up appointment I was advised to book an appointment with my GP to discuss my mental health in general and where to go from here. I wonder whether there will be more referrals, more discussions, and to what extent maintaining any semblance of mental wellness is, for me, going to be a lifelong task. I suspect only time will tell, as I adjust to the knowledge that I am autistic, as I learn what works, and as I start to try to work out what I’m going to do with the rest of my life – that is currently a very big question on my mind, both in terms of what I am able to do, and what I might actually want to do.

But, at this juncture, I am trying to identify how things now are, eight weeks on. It’s almost in the spirit of keeping some sort of journal, perhaps to refer to later, to measure progress. I look back now to what I wrote in Tiny Glimmers, just over three months ago, and, although it might not feel like it sometimes, and although my life still appears to be rather poor quality in many ways, and terribly terribly limited, I can see that things are generally better, and that I’m achieving a little more. I also have the confidence of my diagnosis, the feelings of validation that it gave me, and just that tiny bit of support I’ve had (help with forms, a follow up appointment, reassurance that I’m correct on many things and not going crazy, and suggestions for what I might do next), which have made a massive difference.

Interestingly, when I wrote Tiny Glimmers, I’d been trying to organize my paperwork and sort out my jobs lists and just get things a little more organized. I did the same yesterday, so maybe this is part of the process of taking stock, moving on, and trying to consciously plan and be proactive in life rather than just reacting to crisis after crisis and just “coping” whatever way seems most possible at the time. I did mindfulness meditation for several years (and have not ruled out returning to it when I’m in a more suitable place for it – now is not the right time) and one exercise that I found useful and adapted was to “check in” with feelings and to notice how they were. I adopted a method, during silent practice sessions, of using some of the time to analyse how things were, both physically and mentally (I know the two are not entirely separate systems, but I found it useful to examine each separately because my physical and mental health are so wildly different in their presentation – my physical health and fitness is probably on the “better” side for someone my age in my circumstances, and my mental health is certainly substantially worse).

So, I’d sit and take note of all the various bits of my body, usually picking up on various niggles caused by 50K training runs and the like, trying to work out whether the hip-strengthening work I was doing was easing the ITB (iliotibial band) issues I had for a brief spell, establishing whether my breathing was getting better with the new inhaler, that sort of thing. Mental wellness was, of course, more complex and involved trying to work out exactly where I was on the mania-depression scale, whether I was sleeping, eating properly, levels of anxiety and suicidal ideation and so on. But the exercise was helpful, because it enabled me to decide either to alter my training schedule or do more targeted exercises (physical) or to turn down or cancel things to remove pressure (mental). I had, without knowing it, developed a very basic knowledge that I needed to conserve social and sensory spoons. The “checking in” process really helped with that, and was one of the positives that I drew from the mindfulness I learnt in an attempt to prevent me relapsing, once again, into severe depression.

And now I’m using the “checking in” technique over a longer timescale, and I observe that although my mood and functional abilities are still very wobbly, and still varying wildly from day to day, the good days are better than they were, and the number of really really bad days has lessened. Like the tiny glimmers I observed back in January, there are little fragments of a new life that are now starting to show themselves occasionally, little moments where I am interested in SOMETHING again, and feel that one day I might have the energy to rebuild life and actually make it a bit better, rather than just surviving day to day, and, sometimes, hour to hour. The person who wrote Tiny Glimmers would have looked at the person typing this now and seen a veritable superhero – out of the flat now twice a week on average, starting to think about the future because I’m starting to think that I might actually HAVE a future, and making very tentative plans for the new life.

I know that everybody’s circumstances are different, and that there are many external complicating factors (burnout, family circumstances, comorbid conditions, reactions from others, and so on) during the period following an autism diagnosis. And I know that what I write here also varies wildly as my mood fluctuates and as I try to come to terms with the past and plan for the future. I’ve read accounts and heard from other people that it will be a year or so before things are likely to improve significantly, as my autistic brain is using a massive amount of processing power just to adjust to my new identity and therefore I have less energy for other things. However, using the best powers of logical analysis that I can summon, and viewing the evidence in my own life and in past posts of this blog, I can say that things are a little better now than they were a few months ago. It’s not dramatic – it isn’t “Hey, here’s an autism diagnosis – problems all solved” (and, to be honest, if it was like that then I’d be a little concerned because it’s so unrealistic), but it has made a noticeable difference to my life in a generally positive way. It’s slight, and it’s an upward trend rather than a continuous ascent (there are still a lot of sad and angry bits to work through), but it is, nonetheless, an improvement.

Liberation!

Sometimes,
It is hard, tough, stressful.

Sometimes,
It is difficult
And I wonder
If life will ever
Feel OK.

But…

Sometimes,
It is beautiful.

Sometimes,
The utter delight
At having found myself
And having discovered
Who I really am
And how my life
Is meant to be

Feels like it wants
To make bubbles
And light
And magic
And colours
And sparkles
And joyousness.

I rock back and forth
And it feels GOOD
And RIGHT!

I play with my toys
And sit on my feet
And flap my hands
And rub nice things
All over my face…

And don’t worry about
Speech
Or eyes
Or “doing it right”
Or what is
“Expected” of me.

Because

I finally have freedom
And permission
To be who I am.

It has been
A long time
Coming,

But I am very glad
That this
LIBERATION
Eventually arrived!

Allowing myself
Just
To be
Autistic me
Is sometimes
A very
Very
Beautiful
Thing.

Cyber Housekeeping

Yesterday I did something that I didn’t think I’d ever do in any meaningful way. I returned to twitter.

Twitter and I have a long history (in fact, exactly as long as facebook and I do, since I joined them both on the same day). However, where facebook has provided me with a fairly steady relationship over the years, twitter has been the wild child, the passionate affair that burned brightly and eventually extinguished itself after an obsessive phase with it that saw me unable to go to bed for fear of “missing something” and some sort of falling out with a friend that I never really understood! After 44,400 tweets (or thereabouts, according to my account), we parted company around 5 years ago, and I visited only occasionally, usually to check up on major news events or occasional sporting things.

When I set up this blog I tried to set up a twitter account for it. I knew I should, but didn’t really want to return to my old account as I still wasn’t really sure at the time exactly how open I was eventually going to be about being autistic. The process had become more complicated than when I first joined twitter, and when I tried to log in from the app it wanted a phone number (which I wasn’t prepared to give it) so I just gave up and stuck to facebook.

However, things have changed since then. My friends have, from time to time, tagged my personal facebook account on the page, and, despite attempts to be vaguely circumspect about my identity (I’m not sure why – just that rather a lot of people seem to be so I figured it was the thing to do), it really wouldn’t be difficult to discover who I am. Furthermore, I’ve now reached a stage, since diagnosis, where talking about being autistic is much much easier, and this blog has taken off in a way I could never have predicted (if not in terms of readers, certainly in terms of posts)!

And I kept reading in other people’s blogs about the autistic community on twitter. About #actuallyautistic hashtags, and a whole load of stuff that seemed to suggest that twitter would be yet another source of information about autism – and finding out information about autism is, basically, one of my main reasons for living right now. As usual, the thing that has driven me, back to a social networking site I had given up, is my quest for information. As I’m sure I’ve mentioned before, when I get interested in something, I get VERY interested in it. And autism seems to have become one of my inquiring mind’s most recent victims (the other is the film Chariots of Fire, how it deviates from what really happened, 1920s sprinting in general, the 1924 Paris Olympics, and anything to do with either Harold Abrahams or Eric Liddell)!

So I’ve revamped my old account, complete with old followers and vast numbers of tweets that were probably mainly about tea and biscuits if I remember rightly! I changed the profile picture and cover photo (or whatever they’re called on twitter these days) to the ones associated with this blog and its facebook page, updated my biography to include something about being autistic, and started to engage with folk by tweet again.

So, 2000 or so random victims, who previously expressed an interest in viola playing, mathematics, running, or rats (and cats and other animals), will now likely wonder why they suddenly follow someone called Finally Knowing Me and start receiving tweets from some random autistic blogger! Although I expect discussions of cups of tea and so on will not be completely excluded – will just have to see how it goes because the whole “return to twitter” thing feels somewhat experimental at the moment.

At some point I’d like to tidy up the main pages of this blog a bit too. The Blog Guide is very out of date, the home page no longer really says what I want it to say, and the tags and categories (which I started using in a very random and experimental way because I really didn’t know what I was doing with them at the time) are all over the place. I expect there is a way to add a “twitter button” to it as well! Once I have enough energy and when I can trust myself not to stay on the computer so long that I end up unwell, I’ll try to organize things a bit better. I’m also aware that there are now so many posts here that anyone who arrives afresh might wonder what the heck is going on with it all – I know I would, but then I’m easily confused, so maybe that’s just me!

Everything is all, still, very much a “work in progress” at the moment. Eight months ago even the idea that I might possibly be autistic seemed totally wild and rather bonkers – an outlandish series of suggestions by a few friends! It was only just over six months ago that I first typed the words “I am autistic”, having done some research that indicated rather strongly that the friends were, in fact, correct. I disclosed publicly on this blog four months ago today, following the first rather disastrous attempt to get a formal diagnosis. And I was only, eventually, formally diagnosed seven weeks ago.

So it’s all very new. And I still don’t know what the final result of the whole discovery will be. I don’t know to what extent I will become “an autistic blogger” on any kind of permanent basis, or whether I’ll end up doing something else completely different. Oddly, I keep reading about people who describe discovering they are autistic as “finding their tribe”. I have rather mixed feelings about this – partly because I have actually discovered I’m not as interesting and unique as I thought I was (if you put me into a bucket full of neurotypical folk then I do, indeed, stand out as somewhat different, but if you put me into a bucket full of autistics then I’m actually rather ordinary (it’s the “autism nicked my schizzle” syndrome again))! And partly because I’ve lived without any sort of “tribe” for so long that the notion of belonging to any cohort of people, no matter what sort of people they are, seems somewhat intimidating. I have never had a “tribe” or been part of any sort of group in any meaningful way for any significant length of time. I have existed mainly on my own, as a single unit, and I was actually pretty reluctant even to get married until I discovered a husband who was also a single unit and didn’t expect much in the way of “togetherness”. If I’m going to regard myself as part of any sort of “tribe” or “group” then it’s going to require a bit of a shift of perspective – I’ve not really sought out human company in any great way in my life, and certainly the idea of “group” stuff really feels exceedingly strange.

Anyway, we’ll see how it goes, and we’ll see how twitter goes (and whether I end up with three followers and a few bots (does twitter still have bots?)), and I’ll continue to think about whether I ultimately become some sort of autistic advocate, turn any of these ramblings into some sort of book (though I sometimes get the feeling that there are now so many books that maybe I don’t have a great deal extra to add and should leave that stuff to the professional writers in any case – I’ve never ever believed that I “had a book in me”), and I’ll, obviously, continue to make random discoveries about myself and get used to my changed perspective on life and so on. And, for the time being, I’ll probably continue to subject you gentle readers to a few snapshots of the inside of my head, conveniently translated into word form for easy publication online, partly because, aside for a couple of follow up sessions with my assessor, there is no hapless therapist trying to figure out what’s going on between my ears so I have to do it myself and a blog seems as good a way to do it as any, and partly because one or two folk have told me that it is either educational, or even helpful to them!

Circles

Amazingly, this is my 100th post on this blog. When I first posted to it, last December, I didn’t know whether it would ever get beyond The Discovery, and it was really just a convenient way to let people know that I had discovered I was autistic. In the last four months the blog has seemed to acquire a life of its own, and, from time to time, a few people seem to read it. I can hardly believe that it’s only around eight months since the idea of my being autistic was even suggested – in that time I’ve learnt so much about myself and my life and just how much being autistic has influenced me during the last 45 years.

One of the criteria for receiving a formal diagnosis of “autism spectrum disorder” under the current system is that autistic traits and behaviours need to have been present throughout life (because autism is a lifelong condition). Consequently, the diagnostic process involves a lot of looking back through life and, particularly, back to early childhood. I’m fortunate enough to have a mother with a good memory who is still alive and was able to supply me with lots of information about my early life (I’ll write more on that another time), and it has been interesting to discover what she remembers about my childhood and how it relates to my own memories and experiences.

I’d like to indulge, if I may, in a little imaginary time travel, back through my life, to what, for me, has become an important point as far as my life as an autistic person is concerned. I start from now, 2017, when I am 45 years old, newly diagnosed, and slowly recovering from an episode of burnout. As I go back through my life I think about the 39-year-old receiving a diagnosis of bipolar disorder, the 36-year-old who still couldn’t cook a meal, the 33-year-old who got randomly ill on holidays, the 29-year-old who spent nights bashing their head against the wall and drank bottles of whisky and ate packets of pills and hoped never to wake up again, the 26-year-old who sat at their desk trying to write their doctoral thesis while feeling like they were in a bubble and the world was unreachable, the 23-year-old who graduated top of their class but who ate the same thing for dinner every night and drank alcohol before breakfast every morning, the 19-year-old who couldn’t learn from lectures and dropped out of their first degree, the 16-year-old who was still being bullied at school and whose best friend was a cat, the 13-year-old who was routinely pinned down on the floor of the toilets by the other kids, the 9-year-old whose headmaster thought they were being abused at home, and, eventually, my time travel stops in a primary school in Bradford in 1975, where a little girl sits on the steps of a temporary classroom, crying.

The little girl is crying because it is playtime and she hates playtimes. She hates small children. They are noisy and they run around all over the place in a disorganized manner, and some of them step on the cracks in the pavements which means that very bad things will happen, and they are mean to her and some of them eat sweets in the morning which is against the rules, and so she cries, and she waits, desperately, for playtime to finish, so that she can retreat to the safety of the classroom where there is a teacher who might protect her, and where the children sit down and where it is quieter.

I know these things about the little girl, and have always known them, because I remember them. I remember many things about being 4 years old, but, as I started to question my mother, I discovered that there were things about my 4-year-old self that I didn’t know. One of these was that my teacher summoned my parents to school because she was concerned about me. I didn’t interact with the other children, and, most particularly, I wasn’t learning to write. I just sat and made my pencil go round and round in circles, filling page after page with scribbled circular patterns. The teacher said she’d never encountered a child like me and didn’t know what to do.

Finding out about this “circle drawing” was the first of many rather surreal discoveries about myself that I’d never have made if I hadn’t started asking questions because I was gathering information for an autism assessment. It shocked me somewhat, and I felt a huge sadness for that frightened stressed little kid, trying to withdraw from the world into something comforting, trying to survive in what felt like a very hostile environment. I cried many tears for her, because I couldn’t go back in time and help her, and I knew what she would have to go through before she finally understood why life was so tough. Just after diagnosis I wrote the letter below (complete with muddled tenses) to her, and during the information-gathering stage I went to a shop and bought pens and paper and drew circles and coloured them in. Because that was all I could do.

You will now realise why the “profile picture” on this blog and on the facebook page is what it is, and why I chose that particular picture for the post in which I revealed publicly that I am autistic. Today’s picture is from a similar, but different, drawing of circles.

The most important question I had for my autism assessor during my follow-up appointment was something like this: “If I had been 40 years younger, would I have still been receiving an autism diagnosis at this point in time, i.e. in 2017?” Her answer was that I would have. And she went on to say that, with the knowledge of the present day, the point at which I would have been identified as autistic would have been the point at which I went to school and sat on my own drawing circles and my teacher was concerned about my behaviour to the extent that she summoned my parents in to discuss it. That coupled with things we know about my behaviour at nursery the previous year, and various other things during my early development, would have triggered a diagnosis.

For some reason, knowing that, if I were 4 years old today I would be being diagnosed autistic, as a 4-year-old, is important to me. I have tried to think about why that is, and I came to the conclusion that the diagnosis my 45-year-old self received in February, although it covers my entire life, is a diagnosis for the future, for planning, for strategies, for rebuilding my life. The “diagnosis” my 4-year-old self received, retrospectively, in the follow-up appointment yesterday is, for me, the diagnosis that starts the process of making peace with my past – it feels like some kind of justice for that distressed little girl, crying on the steps of the classroom.

Of course, the other reason that age 4 is so significant for me as far as being autistic is concerned is that, as I started school and had to work out how to survive, it was the time I started to mask. It was the time that I started to learn what to do by watching other people, teaching myself to interact with other human beings. The social codes that came so naturally and intuitively to most others, who sought out human contact, were things that I had to learn through a cognitive process. I’m only just beginning to understand this, and how it has impacted my life. Being undiagnosed protected me from being “written off” or “cured” or whatever, but it meant that I worked fearsomely hard to try to make the world work for me and expectations were made of my abilities that I simply couldn’t fulfil. I believe the damage to my mental health started around that time – as an undiagnosed 4-year-old trying to fit in, learning to sit still, learning to socialize, and to do as I was told to avoid punishment, I was storing up the trauma that would eventually result in decades of mental illness and suicidal ideation (which switched to active attempts to end my life in my late 20s).

I’m certain I’ve mentioned it before, but one of the things that is so interesting about an autism diagnosis later in life is that it not only suggests strategies for coping with life better in the future, it also makes sense of the past. I cannot change the past, obviously, but getting the “diagnosis” for my 4-year-old self is another step in accepting it and understanding it.

Dear Four-Year-Old,

I was talking about you recently, to some nice people.

I was remembering what it was like for you at playtime at school. I was telling the people about the three big girls who used to be mean to you, and how noisy it always was at playtimes, and how much you wanted to get back to the safety of the classroom where there was a teacher who might protect you from the other children, who were frightening and who you didn’t want to be with.

I was also talking to your mother recently. She was telling me how she and your father were summoned to school to talk to your teacher, because there was a problem. In fact, there were a few problems.

I know you could already read very well before you went to school, and the teacher wasn’t very pleased about that, because she was supposed to teach you to read but you already could. She wasn’t very happy with your parents, who had supplied the books.

I found out from your mother that your teacher was concerned because you weren’t learning to write, like the other children were. Instead of writing you just sat and made circles in your writing book, using up all the paper, and any other paper available. Your teacher said that she had never met a child like you, and she didn’t really know what to do. Your parents didn’t know what to do either, so it was decided that you would not be allowed any more books so you didn’t damage them or use up the paper by drawing circles on it.

I know where you lived. I remember the street. I also remember that some kids from the street let your Space Hopper down and you were really unhappy about that because you loved bouncing up and down the street on it. And even though there was a man who worked at the garage and took it to blow it up again it wasn’t quite as bouncy as it had been before, which was sad.

I could send this to your address, which I still remember well, even though you only lived there briefly. But it would never reach you, because the mail can only go forwards in time, normally a few days or weeks. It cannot go backwards 41 years, which it would need to to reach you.

Neither can I come back in time myself, because there is no time machine. But if I could, I’d talk to your parents and teacher. And I’d try to explain that you are a bit different from most other children, and I’d give them a list of things they might look out for, and I’d work out what they could do to try to help make your life a bit easier, because I know that your life turned out to be very very hard in so many ways.

I’m not sure how convincing I’d be. A crazy person from the future, nearly as old as your granny is in your time. And, of course, there would be so many problems anyway because most of the information I have now is from books that will not be written until decades after the time you live in. I have a magic machine that allows me to read lots and lots of information about kids like you, but it won’t work in your time, because it relies on things that haven’t been invented yet.

If I could come and see you I’d try to protect you. I feel sad that you had to go through what you did, and I feel sad that your life was so hard and nobody knew how hard it was. I’d like to tell you that it got better soon, but I can’t, because you have many years of really hard stuff still to go through and many many tough times ahead. Life will be harder than you can even imagine right now. I’m sorry I can’t do anything about that, but you will find a way through, and eventually you will find out why it is like that.

But I would pick you up and hold you tight and tell you that you will, sometimes by strength, sometimes by accident, find a way to keep going through it all for at least another 41 years. There will be things that will help – your parents will not really understand you and they will not know for a long time that you really need extra help and support, but some of the things they do will help anyway. They will continue to supply books, which will help. They will get you a friend who is more comforting than any school friend could ever be, who will have soft fur and will purr for you. And they will let you do some of the things that make life feel better to you.

You know that recorder? The one you chew (yes, I know about that – I’ve still got it somewhere, and your teeth marks are still on the mouthpiece), keep playing it, and the other musical instruments you will learn in the future, because they will be really important to you. Keep reading and keep learning all the other stuff too – being interested in things and learning things is going to be one of the ways you survive in the world.

I will never be able to tell you this, but in 41 years time I will find out about the circle drawing, and I will draw some circles for you, because that is the best I can do for you. Because I am grown up now I can buy lots of really nice paper, and loads of books, and felt pens, and I can draw neat circles now and make patterns and colour them in – you’d have loved that!

When I finally tell the nice people all this, and I tell them about you and about all the other things your mother has recently told me, they will finally understand. And they will tell me some information that will explain why your life didn’t work out the way it was supposed to.

I can’t come back in time to care for you, or to explain. I wish I could.

But I will eventually find out why it all happened as it did and I will discover what makes life so hard for us. There is a word that describes people like us, even though nobody will apply that word to you in 1975. We are autistic.

The nice people listened, and heard all about you, and about the person you became, and they told me that my discovery was correct. You had a different sort of head. I have a different sort of head. We were never designed to fit into the world in the ordinary sort of way.

Stay strong little person. You will survive, and in 41 years you will understand. And you will finally be listened to and believed. And it will make life feel better and you can start to work out how to make an easier future.

See you in 41 years’ time!

A Forty-Five-Year-Old from the future

P.S. In 10 years’ time some girls at school will tell you that you’re too ugly to get a boyfriend. They are lying. You find someone who understands you perfectly and you will have a wedding with really nice cake!

Validation

I had the first of two follow up sessions with my autism assessor. It had been a tough week, one that had tested my resolve to stay alive somewhat significantly. So much doubt, so many thoughts planted in my mind about whether I really knew what I was on about. Was I as wrong about things, as I had been told? Confidence so very low.

I parked. My husband met me, with coffee, which we drank while sitting on a low wall in the sunshine. We walked the 15 minutes or so to the arranged venue (different from where I went for the assessment, closer to home).

And there she was, the assessor. Same dress as before. Familiar. Room set up so I could escape if needed. Lights off, just the sunlight from the window. She made me a cup of tea and fetched my husband a glass of water. I took off my boots and folded my legs under me on the chair, gently rocking back and forth, chewing my fingers a bit.

We discussed the report. We went through the list of questions I’d sent her, one of which was particularly important to me. We discussed what had happened in the weeks since my diagnosis. We discussed the reactions of various people I’d told about my diagnosis – both the positive and the more challenging.

This is not the post for coherent detail – it is written on the evening of the follow up. I am feeling, for the first time this week, that it is worth staying on the planet, and that there might actually be a point to all this. I am relaxed, positive, and maybe even happy. I am not writing an academic essay right now, with proper structure or detail, just a brief account. Nearly one of those “maybe poems”, but not quite.

And, with a professional in front of me, I asked the other questions. Not the ones on the paper, the answers to which were so important to me in any case and really clarified things in my mind. But the other ones, the ones that have been swirling round my mind all week.

Because I had been told that I was wrong. I was told that my analysis of the situation was incorrect, and the implication was that I should listen to someone else, who believed they knew better than me, who believed that I didn’t know what I was talking about.

So I asked the professional. The person who has massive experience, and knows what the answers are to the questions. And she said I was right. My analysis of the situation and my needs was correct. I was not going crazy, and if anyone told me that I was wrong about these things then I should ignore them, because I did know, and I was right.

The sense of validation was huge. Maybe even more so than the day of my diagnosis.

We emerged from the appointment after an hour or so, having arranged to be in e-mail contact. Back into the sunshine and what had just become a considerably more lovely day. My husband bought me some cheese. We chatted for a while, about the positive experience and maybe some hopes for the future.

And he stayed in town to work, the work he has to do to sustain us. I drove home.

And didn’t consciously have to stay alive.

Because I am right, and I am validated.

In many many ways.