Disparate Facts

I’m going to tell you a few facts about me. These things have always been true. They are, on the whole, things that I have always known about myself. For the last 45 years they have been steadily accumulating, and just regarded as my “quirks” by everyone who has known me and known about some or all of these things.

1. I never go to the cinema. Although I went a few times as a child it was never at my initiation and as an adult I’ve hardly ever been. The last time was over a decade ago and we left after the first 20 minutes.

2. I was really naughty at primary school, constantly on headmaster’s report, constantly in trouble for various things, and not really getting any significant work done.

3. I do not know the name of any other person (apart from my husband) in the town where I live. I do not know my neighbours’ names and have never spoken to any of them.

4. I am deeply unfashionable, never wear make-up or a bra, and am utterly unable to comprehend why, say, wearing socks with sandals could be wrong since it’s comfortable and easy.

5. I really like even numbers and most particularly numbers with lots of factors. I like square numbers, and I believe numbers have a sort of hierarchy where some are more relaxing than others.

6. I scratch my head a lot and pick the skin off my scalp. In my 20s I did so very very badly and had open wounds on the back of my head. I didn’t know why I did this, it was just a thing I did.

7. If I spent 20 minutes or so in our storage unit I start to feel very very exhausted and sick. I have to sit down and I then deteriorate to the point where I have to go outside.

8. Sometimes I go really really quiet and just stop talking. It usually happens when I’m really exhausted or really stressed or I’ve just become really angry about something.

9. I cannot tell the time easily from a traditional clock face. Neither am I very good at telling left from right without thinking about it really hard and making writing movements with my fingers.

10. I was bullied all the way through school, even at secondary school where I wasn’t regarded as naughty any more, but as a bit of a geeky strange kid.

11. I’m a really rubbish cook. Before I was married I lived mainly on takeaways and toast, and I often forget to eat and have very little idea of how hungry I might be.

12. I sometimes get really really stressed and angry at everything in a really really short space of time and need to run away or hurt myself and I have absolutely no control over it.

13. I have never been able to keep a job for a sustained period of time and most of the jobs I’ve had I’ve left with some sort of mysterious mental illness, usually given as depression.

14. Left to my own devices I take my shoes off and sit with my legs crossed like in primary school assembly, or sometimes with them folded underneath me.

15. I get really stressed when I’m near the fridges in supermarkets. I usually leave my husband to do all the fresh food shopping and spend my time sniffing every single sort of fabric conditioner.

16. I have never had, or wanted, a satnav machine. I love looking at maps and if I have to go somewhere I don’t know then I look it up in advance and memorise the map.

17. If I am going to do an exam and I agree to meet up with people in the pub afterwards I will be much much more nervous about the pub than I am about doing the exam.

18. When I start a new hobby (or resume an old one) I take it very very seriously. I buy loads of books and research it online and often work on it late into the night.

19. My legs jiggle almost constantly if I don’t consciously try to stop them. I cannot sit still and have been known as a fidgety person all my life.

20. I will automatically assume, once I’ve finished writing this blog post, that you’ve already read it, even though I haven’t posted it yet! I will have to keep reminding myself that this isn’t the case!

If I had listed these facts a year ago I would have seen no connection between them whatsoever – they would just have seemed like a list of random unrelated facts. In fact, I would never have even contemplated making such a list – why on Earth would I have connected my inability to cook, with my avoidance of the cinema? or my behaviour at primary school, with the fact that I have never owned a satnav? or getting exhausted at the storage unit, with resisting fashion trends and not wearing make up? Thinking about these these things there seems to be very little connection, if any at all, between many of them.

Until you start playing “autism bingo”!!! I should imagine that, if I gave this list to a group of autistic people, many of them would look at it and say “Yes, me too, me too” or something similar. Obviously, not every single thing would apply to every single person (everybody’s different after all), but the minute I started researching autistic traits and examining my life, the above list of apparently disparate facts suddenly links up and makes perfect sense. It seems that I wasn’t really “quirky” in the way that I thought – these are all just standard manifestations of autistic characteristics!

I’m fairly certain that I will discover many more things that could be added to the list above as I continue to examine my life from an autistic perspective.

It really is about understanding.

Limit Exceeded

Two days
Out in the world.

Drinks in a pub.
Walking,
Talking,
To three other people.
Some difficult subject matter.
Decisions to be made.
Negotiating.
Head already overloaded.
Working so very very hard.

A meal out,
Eating,
While talking,
With noise,
And people.
More difficult stuff.
I managed half
My food.
Achievement.

Then home.

A stimmy evening,
Unsettled.
Sleep
A long time
Coming.
Wakefulness
Followed
Quickly.

Then up again,
Dressed again.
Coffee and a snack.
More noise
More conversation.
Lots and lots of voices
Trying to filter out
The necessary bits
And to describe
And explain.
Eating again too.

A shop.
My legs starting to tire.
The lights brightening.
A walk.
And, already overloaded,
Unable to cope
Unable to explain.
Needed neutral
Or gentle
Non confrontational,
Or silence.
Didn’t get it.
Head overboiled…

Meltdown.

Unstoppable
Inevitable
Out of my control
Fuse tripped
Bottom fell out
Of
My spoon drawer…

Trying not to bash my head
Against a stone wall.
Desperate to damage
To replace the pain
In my head
With easier pain,
To make the wrong feelings
Right again.

Collapsed on the pavement.

Pulling my hair
Tearing at my leg
Simultaneously
Regretting and glad of
Short fingernails.

Wishing I had never
Been born.

The sun
Dazzling
Through dark glasses.
Bright bright bright.

Distant voices.
Phone call.

Another universe
There are people there
But they are outside
My head.

I understand the words
But am unable to respond.

Words gone.
Connection severed.

I head for my car,
Safe space.
Mine.
Closest there is
To home.

Trying to sort
With others
By typing on phone.
It wasn’t supposed
To end like this.
I was supposed
To be stronger.

Driving home
Waves of nausea

The last emergency spoon
Used.

Sofa.
Blanket.
Darkness.
Silence.
Everything
Hurts.
Ears ringing.
Head in pain.
Body aches.

My husband messages.
He comes home
Early
To care for me.
I eat a few crisps
For dinner.

Eventually,
Exhausted,
I sleep.

I wake, tearful,
Wishing I was no longer alive.

Finally I get out of bed
At three in the afternoon.

After an hour and a half
I manage to get
A glass of water…

I know I should eat.
I don’t want to.
But I eat soft white cheese
With a spoon.

And recovery begins.

This is why
I have not blogged
For a few days.

Life is not
Easy.

Whatever You Call It

So, the dreaded “Autism whatever-you-call-it Day” has arrived. The day that, in theory, should be about autistic people and their needs and so on, but, from what I’ve gathered so far, seems not quite to work out that way (remember, I’m still really new to all this, and still learning, so I’m not going to go into detail about some of the more frightening aspects of the “light it up blue” campaign (please don’t light things up blue – many autistic people hate it, as they also hate the “puzzle piece” symbol), because I need to do further research and thinking before I’m confident enough to discuss some of the things I’ve been reading over the last few months – as far as the “politics” of autism are concerned, I’m very much still at the “listen and learn” stage).

However, as a newly-fledged autistic blogger, I eventually succumbed to the need to make some sort of statement about this day/week/month or whatever. I believe it was originally called Autism Awareness (and was then taken over by a particular organisation), but that the autistic community are now pushing it towards Autism Acceptance, and I’ve even seen several suggestions that it should be called Autism Appreciation! So, I’m going to look at awareness, acceptance, and appreciation, and consider just a few of the things I’d like to see more (or maybe less) of, as far as autism is concerned. This isn’t an exhaustive list, nor am I claiming to act on anyone else’s behalf, and where I’ve mentioned “most autistic people” I am acting, at this stage, only on the impressions I’ve received in the short time I’ve been part of the autistic community. I’m also conscious that the style is a bit rough, and it makes some generalisations for which I don’t currently have “hard” evidence, and that it also addresses non-autistic people rather heavily (if there is any element of “patronising” then it really isn’t intended, though I’m worried it might come over that way). Trying to make the thoughts into words is sometimes a little tricky – I am still very much a novice at this.

Awareness

1. I’d like everyone to be aware, really properly aware, that most autistic people are ADULTS. Autism is a lifelong condition and it doesn’t magically stop when someone reaches a significant birthday. Yet the mainstream focus on autism seems to be almost universally geared towards children – many autistic adults are unsupported, have poor access to diagnostic facilities, and are finding life tough. Many of us went through years of struggles before we even knew we were autistic and are burnt out and traumatised by the experience, yet when we search for information we are faced with a barrage of articles about children. This is not to downplay the importance of care for autistic children and the fantastic job that many parents do in trying to understand and care for their kids, but today’s autistic children will become tomorrow’s autistic adults – and once they’re not cute any more or their parents are no longer around to look after them they will very likely continue to need support.

2. I’d like people to be aware that most autistic people prefer to be referred to as “autistic”, not as a “person with autism” (though not all, and it’s always wise to ask people how they like to identify themselves because it’s their choice). My own thought is that “With autism” implies that some version of the person exists “without autism”. But autism is not an “add-on” – you can’t remove it somehow – the only way to make an autistic person “non-autistic” is to murder them, and I’m seriously not in favour of that approach for very obvious reasons! I’d also like people to be aware that many autistic people really really hate “functioning labels”. I have a whole blog post to write, one day, about the use of “high-functioning”, “low-functioning”, “severe”, and “mild” and how utterly inappropriate these terms are to describe an autistic person – autism is a condition that presents in so many different ways in such a variety of people that dividing the autistic population up based on some arbitrary criteria and how they are perceived in the non-autistic world is both nonsensical, and, to many, deeply offensive.

3. I’d really really like ALL health professionals to be more aware of autism and the needs of autistic people. Really aware. So that nobody will ever show up at a GP surgery and be told they “can’t be autistic because they make eye contact” or “there’s no point diagnosing adults because there’s no support”. So that nobody will have to spend years fighting for their daughter to be diagnosed, and go through multiple misdiagnoses because the professionals don’t know what to look for. I spent 20 years in the mental health system – not one of the professionals I saw suggested that I might be autistic – it was left to some friends I met by accident through a couple of my interests to point it out to me, and I then had to battle through a diagnostic process which nearly killed me, and where I encountered a psychologist who clearly knew very little about autistic people, how to treat them, or what some of the characteristics of autism even are. Awareness of autism in the medical profession is still, at best, patchy.

Acceptance

1. Fully accepting autistic people and our ways is, for many people, going to be challenging, and those non-autistics (also called allistics) who lead the way as allies to their autistic friends and family will, to a significant extent, have to fight against their OWN neurologies. I know quite a lot about fighting one’s neurology – I’ve spent 40 years doing it – it isn’t easy. Worrying about “how things look” or “what people will think” has, sometimes, to be ditched when dealing with autistic people. Picture yourself in this situation: You’ve gone out to coffee with a hungry friend – that friend approaches the counter in dark sunglasses and orders their regular coffee and snack without looking at the barista, the snack is sold out, your friend starts to sweat and gets anxious and walks away from the counter, leaving you to choose an alternative snack, pay the bill, and deal with the barista. You get the coffee, take it over to the table, where your friend is sitting, rocking back and forth, and scrolling frantically through their phone. People on the other side of the shop are looking at your friend, who doesn’t thank you for the coffee and barely acknowledges your arrival. A gang of kids comes in and starts laughing at the two of you, your friend starts to wave their hands around, which makes you even more conspicuous, and then screams hysterically, jumps out of their seat, and runs out of the shop and up the road in tears, leaving you to sort out the resulting chaos. If you’re still cool at that point and totally accept that your friend’s behaviour is entirely beyond their control and is the result of their being autistic and you totally accept it all then I think you’re wonderful! And you’ve just had coffee with me on one of the days where I’ve made myself cope in the outside world when I needed to be somewhere, when the option just to curl up and stay at home wasn’t available.

2. Accepting autistic people doesn’t just mean accepting the visible either. I am one of those autistic people who visibly stims. I always have to some extent, and now I know how good for me it is I control it the absolute minimum possible – it’s easy to see. I wasn’t asked about repetitive movements at my assessment because there was no need – it was obvious! With me it’s a case of “love me, love my stimming” – simples!!! However, there are many autistic people who don’t visibly stim, who might be waggling their toes inside their shoes, or subtly pressing parts of themselves against something. There will be nothing to see, but they might be finding it really difficult to follow a conversation or cope with being downwind of someone wearing strong perfume. They might have changed their clothes 20 times before leaving home because they were having a bad sensory day. They might have spent the previous night in tears because their favourite blanket was in the washing machine or the shop had run out of the only thing they could possibly eat for breakfast. They might, themselves, be anxious about asking for adaptions and not be quite as brazen as I often am about such things (sometimes I’m very brazen, other times I find it more difficult). Accepting the invisible can be particularly challenging for many people, but to fully accept every autistic person it is essential – the words “but you don’t look autistic” can, I’ve read so many times, feel invalidating and hurtful. Personally, I’ve never had those words said to me (see the start of this paragraph, which probably explains why), but not every autistic person is like me, and questioning somebody’s identity based upon some kind of stereotype of what autistic people are supposed to “look like” is really not cool. Autistic people are varied in their looks and behaviour, just like everybody else!

3. Because autistic people have different ways of perceiving the world and quickly become overloaded, especially in certain environments and around people, we need a LOT of downtime. Accepting that your autistic friend is still your friend and still values you even though they’ve cancelled your meet-up yet again is tough, but is part of the acceptance. Sometimes we really do need to be alone and stare at the wall – maybe for several days. We often need to do things that seem, from an allistic, social, point of view, rude. I am much more likely to be able to cope with having dinner with you if my phone is on the table next to me and I take breaks from talking to you to play a game or retreat into cyberspace – this, I understand, is regarded as rude in many social circles. It is not rude – it is survival, it is coping with overload. Furthermore, for those of us who are sporadically nonverbal and have times when we can’t speak, such devices are our communication tools, and, often, knowing they are there and we can resort to typed communication provides us with sufficient security that we can actually get through a meal and contribute to the conversation because our anxiety levels are lower. Next time you see a child with an iPad in a restaurant, don’t automatically assume that it’s an example of “bad parenting” or similar – it might be the difference between that family being able to go out to lunch or not. We are not necessarily great communicators – we are unlikely to phone you spontaneously, or be very good at getting back to you quickly (sometimes sending an e-mail takes a lot of effort) and we might miss subtle allusions and misunderstand social codes and we often cope rather better if you talk to us in clear, uncluttered language, but we are nearly always doing the best we can – this means we can get exhausted very very quickly. Many of us struggle to keep our homes tidy and clean – if you visit, do not judge us by conventional standards, because we can’t always keep up in the way that might be expected. “Pushing on through” when we are finding things difficult is often, for us, NOT the answer, and might actively damage us (Note: I am aware that some of this doesn’t just apply to autistic people, and there are many others with other conditions who have similar struggles). We can’t operate with the same set of conventions that many other people can because we’re working on a different system with different energy levels.

Appreciation

1. Although we do need time and space, many autistic people really really want to participate in life. If you want to appreciate our enthusiasm and skills, then bear with us and KEEP INVITING US! Sometimes we will have the energy, and we will want to spend time with you and enjoy the things we have in common with you. Sometimes, even if we can’t make it, we will really value the invitation. Many of us have a lot to offer, and we’re happy to share our time and skills with you, even though we’re not often the greatest publicists on the planet. To fully appreciate autistic people takes time, and possibly a little more effort than is usual (believe me, we’ll be making as much effort as we possibly can – it goes both ways – many of us are doing our absolute damndest to fit into the world, even though it is incredibly difficult). Many autistic people have a great deal of knowledge about a great many things – we’re often prolific learners and when we’re interested in something, we can become VERY interested in it indeed – some autistic people can make great careers out of their interests and appreciating talents is just as important as supporting through the difficult bits. (I realise I’m using “we” here, without having consulted with any other person, but I hope you’ll forgive the generalisation based only on my observations thus far – I do make an attempt, from time to time, not to make all of this exclusively about me, because, lovely as it is to be appreciated, I’d really like all other autistic people to enjoy appreciation too). Don’t give up on autistic people because we need a bit of extra consideration – there are autistic people who never speak but write books, and there are autistic speakers who can present brilliantly but miss out on the opportunities for networking in the bar afterwards, and so on. Being autistic is an important part of an autistic person’s identity, yes, but so, often, is being an artist, musician, scientist, poet, writer, sportsperson, someone who cares for animals, and all manner of other things. Appreciate all this stuff for its own sake too! Never underestimate what is going on in our heads, even when it’s not immediately apparent from the outside.

2. If an autistic person shows up at your party, or comes to your event, or spends time with you, then appreciate this – they are likely to have put in a huge amount more effort to have shown up than most other people will have. This statement is in NO WAY intended to induce any sort of guilt or to stop you sending invitations (see above), but just to make you aware that what you see on the surface might not be the full story. I am currently at the stage where, in order to recover from any major time out in the world, I need two full days blank in my schedule where I am mainly alone, mainly in a dimly lit place, and free to stim for hours or watch the same film on repeat, or similar. But most people who see me out in the world will not know that. Most people who watched me play in a concert the other night will be unaware that I spent two full days with a blank diary earlier in the week in order to prepare and that I now have two further blank days in order to recover enough energy for next week’s commitments. Being autistic means, as I’ve already mentioned, getting more tired than most people who do the same stuff. Appreciating the effort made might often mean just being aware of that effort, and, when somebody turns down an offer of a post-gig drink, for example, don’t argue with them or push them, don’t feel slighted when they need to take time out or sit on their own during a tea break, or can’t contribute in quite the same way as everybody else – appreciate the effort that has gone into being there at all, and know that you are the recipient of massive amounts of energy because you, or your event, or whatever, is appreciated and valued by them.

3. And, lastly, appreciate what autistic people themselves have to say. There are lots of us around – we’re everywhere, and many of us have plenty to say for ourselves (as you’ve probably noticed) in the form of books, blogs, and so on. As I’ve already mentioned, we’re a varied bunch, and our opinions on things differ depending upon circumstances, background, and so on. We’re not some sort of bunch of “autistic clones” who are all exactly the same as each other, but we do, often, understand each other in ways that, perhaps, allistic people don’t – even the most highly qualified allistic autism researchers and those who care for autistic people do not experience things from the inside, although many of them do make a great contribution, but in a different way. If you want to know what it’s actually like to be autistic, then asking people who are autistic is, perhaps, a good place to start. Many of us are glad to be asked (though we might take a little time to respond, and, remember, our ways of communicating responses might be a little unconventional). I am, of course, all in favour of autistic appreciation – any time anybody wants to appreciate this particular autistic (and their blog), you’d be very welcome. Appreciation in the form of good lattes, wine, cheese, nice soap, and an endless supply of fuzzy tangles is particularly welcome!!! 😉

As to lighting anything up blue, please don’t. There are various other campaigns such as “light it up gold”, “red instead”, and even “tone it down taupe”, which are, I believe, initiated by the autistic community. I have gone for the colour orange at the top of this post – orange is reasonably close to red, gold, and taupe, and is also the complete opposite to blue on the colour wheel. Thought that might be appropriate!

My “awareness, acceptance, appreciation” duties now discharged as best I can on this day, this blog will now continue, quietly, to do whatever it does in its own way.

Very Very Tired

Imagine…

You ran a marathon yesterday
Or had a big meeting at work
Or took a difficult exam
Or moved house
Or finished a huge assignment
Or travelled a long long way
Or dealt with a family emergency
Or been to a large all night party

Or something else similar…

These are big things.

You might expect
To be
Very
Very
Tired.

And today you would need to rest.

In my autistic world
I know that if…

I went out of my flat yesterday
Or spoke to several people
Or had to sit still for a while
Or encountered harsh lighting
Or chatted for a few hours
Or had to wear particular clothes
Or sent a few e-mails
Or gone for lunch with friends

Or something else similar…

These would be big things.

I would expect
To be
Very
Very
Tired.

And today I would need to rest.

For years
People have asked me
“Why are you so tired?”
“What have you been doing?”

Until I knew I was autistic
I could only say
“I don’t know.”
“I don’t understand.”

I was just as baffled
As everyone else!

I know now
That
For me
As an autistic person

The cause of this
Utter
Debilitating
Exhaustion

Is simply
Existing.

Existing in a world
Where people communicate
Constantly
By talking.
Instinctive to many
But an effort for me.

Existing in a world
Where the input to my brain
From my senses
Is massive
And overloads my system
Until I can no longer cope.

Existing in a world
Where people sit on chairs
And care about appearances
And follow secret rules
That nobody told me.

It takes a lot of effort!

Recovery Time

I’m aware that I continue to be a bit absent from this blog at the moment. I’m finding getting the energy together to post is currently a bit more challenging than it has been, and the words aren’t flowing very easily.

I’d say there were probably several reasons for this.

1. I’m trying to get out into the world a couple of times a week at the moment – every time I leave the flat it uses huge amounts of energy and I need a lot of time to recover. But sitting in the dark by myself in a very small, cramped, untidy flat for around 14 hours a day on average isn’t very exciting, so I’m doing what I can to make life a little more interesting.

2. I’m using additional energy to communicate with my family following my father’s cancer diagnosis. I’ve fixed up to meet with him in a couple of weeks and that has become a priority for me.

3. I’ve finally admitted that studying maths is not going to happen for the foreseeable future, so I’ve been spending a little energy adjusting to that too. It was evident that it had become too much for me, but it was, to an extent, keeping my adrenaline levels up.

4. After months of really terrible eating patterns I’m making more effort to eat a bit better. I’m lucky enough to have a body that is remarkably tolerant of the problems my mind causes it, but I’m also aware that looking after it a bit is important.

5. I’m trying to sort out administration and paperwork and financial type stuff at the moment. Just because I’m falling apart and autistic and so on doesn’t mean that the electricity bills and so on stop. My husband is doing an amazing job caring for me, but he is only one person and I’m trying to contribute a bit to the running of our lives when I can.

6. My autism diagnosis is starting to sink in. I still need to go through my draft report thoroughly and get my follow up appointment arranged and think about the sort of support I need and so on. But, like giving up on the maths, the immediate and urgent need to produce evidence and the stress and adrenaline of pursuing the diagnostic process is over.

So, partly I’m trying to direct some of my attention elsewhere, but partly I’ve really seriously crashed energy wise. I tried to get up at 9 this morning, got as far as having a drink, then fell asleep on the sofa until midday. The months last autumn where I didn’t sleep at all are catching up with me now, the stress of the diagnostic process has left me exhausted, and I’m still considerably burnt out and trying to recover from what has evidently been an episode of severe autistic burnout. I currently need a lot of sleep, and even more rest, and as I’m using energy and executive functioning skills to try to eat regularly I have fewer resources available for turning on the computer and making blog posts.

I’m certain this is just another phase in the process, and the exhaustion is just something I have to deal with for now. My energy levels are very variable, and at the moment there’s nothing much I can do other than go with how things are and take the time I need to do the things that are most necessary.

I suspect this is all part of it. Discovering, in my mid-40s, that I am autistic is proving to be exciting, a relief, stressful, anxiety making, completely mind blowing, and, at the moment, utterly exhausting.

I’ll leave you with a few words (below, in bold) that I typed into the iPad the other day, but which I was too tired to turn into a blog post. Just the process of turning my thoughts into words is often hard enough, but then getting the right bits of computer and so on coordinated sometimes makes things impossible. Someone once suggested I should get an app for the blog – the thought of something so difficult (that sort of thing really is difficult for me) reduced me to tears – I’m sure my way of doing things is not the best, but the energy for learning something new simply isn’t there right now – new apps and things will have to wait until I’m better. My husband will testify that new computers and phones and so on have all led to meltdowns and tears and I resist technological change really strongly – even when it’s for the better – because it causes me such huge anxiety. I usually only change anything when I’m absolutely forced to!

I should add, however, that, just over three weeks after my diagnosis, I am continuing to feel a certain sort of “better”. I can already feel that although life will always be a struggle, there is an underlying mental wellness that I haven’t known for decades, if at all. And I now feel more confident in telling people that I am autistic and feel that I believe it myself much more. The process was difficult and exhausting, but, ultimately, for me, is already proving to be worth it. Accepting that I have a lifelong condition that will always limit me is not the easiest thing that I’ve ever had to do, but refusing to accept and embrace it won’t make it go away, it’ll just make my everyday life more difficult than it already is. It will take a while to work out exactly how best to live my life and to work out how to adapt it to make it as good as it can be, but having the formal diagnosis is already making that easier for me.

Yesterday,
I was out in town.
Conversation and coffee,
Socialising and shopping.

Not very much of the above,
Admittedly,
And nothing bad or especially
Difficult.

But enough
That

Today
I am quiet at home.
Tiredness and television,
Resting and recuperating.

Need so much of the above,
Always,
Even when I have had a
Good time.

Not energy
Even
To post this
On the blog.

Absent

Aware
That I am a bit absent
At the moment.

Trying
To deal with so many things
At once.

Feeling
Quite unwell and stressed
And anxious.

Absorbing
So much big news about
So many things.

Using
So much energy constantly
Just to cope.

Needing
To remove as much pressure
As possible.

Struggling
To deal with the newness
Of so much.

Stimming
Though not as much as
I need to.

Dealing
With yet more forms
And reports.

Worrying
About some of the outcomes
Of these forms.

Attempting
To get out of the flat
Sometimes.

Resting
As much as I can because
I need to.

Finding
Life is rather exhausting
And challenging.

Wanting
To do so much more
But waiting.

Retreating
Back into the familiar
When possible.

Observing
That I’m out of my depth
Frequently.

Noticing
That my thoughts are often
Scrambled.

Intending
Still to write informative posts
About autism.

Taking
A little more time and space
Than previously.

Replenishing
Energy and thoughts and words
For a while.

Changed Life

My life is an interesting mix at the moment. I say “interesting” because one of my ways of coping with things is to be “interested” by them and to learn. Feeling emotions is, on the whole, difficult and complicated, and I’ve never received any training in how to feel things, so it confuses me somewhat. However, the education system I went through did provide me with ample training on how to learn and analyse things, so I tend to retreat into learning and analysis whenever possible. My head is wired in such a way that I have wondered all my life why school spent so much time teaching me the easy stuff (for example, mathematics), but so little teaching the difficult stuff (for example, what to do in a tea break at work). I realise now that that might be because many people don’t naturally go off and learn mathematics for fun just because it’s interesting, and most people seem to have some innate knowledge of how to cope with tea breaks and haven’t had to spend years observing other people to learn what to do and how to handle such problematic situations.

Anyway, there are two conflicting strands intertwining in my head at the moment. The shock of my father’s diagnosis (see Reactions to Diagnoses) is still very present (although now, over a week in, I am starting, slowly, to process it), and I’m beginning to work out how to adjust my life in order to spend some time with him during the next few months. I’m trying to focus on sorting out the practicalities of visits and arrangements at the moment, and my priority is to use whatever energy I can to do what I need to do in a timely manner.

But I’m also acutely aware that I currently have very limited energy. Interestingly, other things in my life have suddenly become less important. I have, for the time being, abandoned any thoughts of participating in running races. I am still very burnt out, and while I recognise how wonderful running is for me and for my health in general, what I need right now is to learn how to stop pushing myself and to rest. Coping with the overstimulation out in the world is something I’m finding difficult at the moment, and pushing myself into massive physical exertion only overtaxes my system further. I’m also having huge sensory issues with running kit, which is a different sort of fabric from my usual soft cotton t-shirts, and I cannot reliably wear such clothes at the moment without sometimes encountering waves of nausea. Furthermore, getting dressed at all is often still really challenging for me, so getting changed and changed again uses up so much energy that it’s really not a valuable use of resources. And that’s before I start on the hours of build up needed even to leave the flat at the moment! I fully intend to return to running seriously again, especially the long distances that are so fabulous, but I can easily put it on hold for now, while I recover. I need to get my energy back, work out how to deal with the crowds at races so I don’t end up crashing out of them like I did last year, and maybe I’ll ease myself back in via halves and marathons first, then return to ultras in 2018.

I’m trying to keep a bit of music going, but, for now, only familiar and relatively low pressure stuff. This time last year I was preparing to play solo Hindemith as part of a gig, and to perform a concerto in the summer, but this year I am sticking to a bit of gentle orchestral stuff and maybe a bit of fun chamber music should the opportunity arise. Nothing that requires hours of intensive practice or any great pressure – even the pressure of finding concert clothes and getting out of the flat to the gig and being surrounded by people and the sensory demands of the outside world is quite enough to cope with.

The other really difficult decision I need to make might well be forced upon me anyway soon. For years now I’ve been studying maths with the Open University. It’s been brilliant, but it’s also been a really rocky ride because my health has failed so many times over the years. Things have also changed massively with the way that the courses and degrees are organised and funded over the years, and for the last couple of years I’ve been desperately trying to finish my degree before it vanishes completely. The University have been very good, and the tutors I’ve had have been nothing short of excellent in their support, but I fear that I have now reached the end of the line. I cannot see how I can continue to work at the level I need to for the time being. Unlike running and music, however, which can be picked up when I’m better, I fear this really is the end for the maths. Had this happened 10 years ago I would simply have taken a year or so out then carried on, but that is now impossible (very long boring story to do with government funding, modules, student loans, deferrals, degree programmes and so on).

My husband is going to try to contact the OU and see whether there is anything to be salvaged (if there is, then we’ll do it), but that, in itself, is a problem because they will only speak to me and I’m not up to having the discussion right now. The problem with needing help is that in order to get help you have to be well enough to ask for help and if you’re not well enough to ask then you just slip off the radar and vanish – the same happened to me with disability benefits – I just gave up. I can’t contemplate any of it at the moment – all my energy is needed just for survival. Furthermore, any hopes that I would eventually “get better properly” and be able to use a decent maths degree (during the times I *can* work my marks are often high and might, with good health, have led to an excellent degree) to establish a good career, are now gone. The problems I have with energy levels and executive functioning and coping out in the world when surrounded by other people are the result of me being autistic and that is permanent. Just finding enough strategies to COPE at all with life is going to be a big deal – I now know that the possibility of a “successful career” is gone and that if I ever manage to work again it will have to be a very different sort of work from that I had in mind when I hoped to “recover” from whatever it was that meant I kept breaking.

So, life feels like it is changing rapidly. Priorities are altering, and the upheaval continues. My life, which, a year ago, I had been hoping to build up, has shrunk back down to something much more modest. Doing 100 mile races, performing concertos, and getting a good maths degree all seem to be in a different universe right now. My relationship with my family is in the process of changing significantly, my ambitions for life are undergoing a time of readjustment, and my entire identity has altered. I’ve moved from simply “not being very female” to actively describing myself as non-binary and I’ve discovered a world I couldn’t even have imagined existed a few months ago. It’s also still only seven months since the chain of events started that would lead me to discover, a few weeks later, that what I’d regarded as “normal” for the last 45 years was in fact “autistic”, and eventually to be diagnosed with Autism Spectrum Disorder just 2 weeks ago today. It is all really really life-changing.

Interestingly though, two weeks after diagnosis, my husband has remarked that for all the current problems in life, he perceives an underlying wellness in me that he hasn’t seen for a very long time. For all the upheavals, and all the strife, and the current difficulties, it would seem that the process of accepting who I really am IS eventually going to lead to a better life. It has become obvious from the “facebook memories” feature that for all my external optimism about life a year ago I was already really struggling, and the signs of impending burnout were already there – the life that I was still rebuilding was unsustainable, but I just didn’t know it.

And, now I am finally emerging from the diagnostic procedure itself, then, following shortly afterwards, the news from my father, I am starting to accept my changed life in a way that I wouldn’t have done previously. The angst I felt before diagnosis (even when everyone round me was telling me that of course I was autistic and go gently on myself and so on) is starting to recede and I feel, oddly, like a “more confident autistic”. For the first time in my life I am learning to take pressure OFF myself. For the first time ever, I’m able to tell myself that my head DOES work differently from the heads of most other people and that it’s true, what I mean by “tired” is different from what many other people mean by it (not all – obviously there are those who have other chronic conditions and illnesses and so on – I’m not referring to them, but to the population as a whole, to the people who CAN go out to work every day and so on). I am learning that being autistic means that my system gets exhausted JUST BY EXISTING, and I therefore need more rest than most people do. I am allowing myself to rest more FOR THE FIRST TIME IN MY LIFE, and I’m no longer forcing myself to constantly push through the bad feelings.

I’m finally letting go of the notion that I need to be all things to all people – I scroll past questions on facebook that I know I could answer, but sometimes I let someone else take the question because I know that typing a lengthy answer will tire me. I look at some of the posts and “advice” in the self-help and fitness related groups and books and I know now that this advice might work really well for neurotypical people, but that it doesn’t work for me because it doesn’t take into account that my neurology is different. Autistic people need a different version of the “self-help” manual – one that takes our neurology into account, one that recognises our differences and the extra work we need to put in in order to exist in the world and the fact that being with other people is utterly exhausting for many of us (maybe I’ll write one sometime)! I am starting to recognise that in order to stay well I have to question much of the “received wisdom” about life, and much of what I’ve learnt through the years. I need to adapt the advice, rethink the strategies, and alter my life accordingly.

And although I’d been learning lots and lots of this on my own, had disclosed my autistic status on this blog (see The Discovery) to anyone who cared to read it, being validated by a professional has, for me, given me the permission to change my life and to feel justified in doing so, which is why what happened two weeks ago today was so important. It turns out that even if the rest of the world was absolutely convinced that I was autistic and did everything they could to help and reassure me, the person who really needed convincing was me.