What you see and what you don’t

What you see:

A mum taking her kids to the school Christmas fair.

What you don’t see

The ride home after where I scream and scream and scream because it’s the only safe place I can do this without someone calling the police. How hoarse and sore I am afterwards.

What you see:

Me going from stall to stall like any other mum, buying child-made Christmas tat.

What you don’t see:

Me, later, curled up on the floor in the foetal position, shaking.

What you see:

A busy school hall with lots of people enjoying themselves

What you don’t see:

Sensory hell: the echoing of voices in the hall, all the individual voices and noises that come together in a great cacophony. The searing heat which makes me feel like I’m actually on fire. The smells, all the terrible conflicting smells that assault me. The terror of not recognising a face in time or not being able to process someone’s words above all the background noise. The flu-like symptoms that linger for days afterwards.

What you see:

Me exchanging pleasantries with other parents and teachers.

What you don’t see:

The conviction that I am doing something wrong, that people must be angry with me or judging me in some way. The post meltdown period of being non-verbal where I have to sign or write things down for my daughter to read because I just cannot speak verbally for hours afterwards.

What you see:

Me queueing for drink and a festive cupcake.

What you don’t see:

Me sobbing as meeting the basic needs of the kids afterwards feels impossibly hard.

What you see:

Me sharing a joke with another mum

What you don’t see:

The self-harm later which I desperately try to steer so that I don’t do any permanent damage.

What you see:

A naughty child, wildly out of control and wilfully ignoring her mum’s pleas to enjoy herself in ways other people are more comfortable with.

What you don’t see:

A kind girl who accepts that sometimes Mummy can’t cope. A girl who tries her best to comfort me by bringing me items that would soothe her. A girl whose most frequent communication (verbal and signed) is “I’m so sorry” and “I love you”.

What you see:

Me leaving a little early, perhaps looking a little frazzled as the mask starts to slip.

What you don’t see:

The days it takes me to recover from this event, the exhaustion, how we live on microwavable food and things like taking a shower become a huge achievement if they happen at all.

What you see:

Me joining in, pretending to be part of a community.

What you don’t see:

How badly this makes me want to die, how my real community are the only ones who I can allow to see the truth because it is also their truth.

What you see:

A mask

What you don’t see:


What you think:

There’s a mum doing a typical mum thing, no big deal.

What I think:

Why do I do this? Why do I try so very hard? Why can’t I just accept that doing typical mum things is too difficult and usually not worth the effort?

(Because I love my daughter and I don’t want her to miss out on things her peers get to do).

What you think:

I’m not a bad person, I wouldn’t judge someone for being disabled or having dodgy mental health. I am approachable and would try to support them, they could totally tell me if they were struggling.

What I know:

It is not safe for me to admit how bad things often are. I cannot afford to drop the mask and be perceived as not coping. Asking for help only makes me more vulnerable. Being stuck in this situation makes me unspeakably angry at the injustice of it all but I have to suck it up and just carry on letting you believe what you see because the alternatives are unthinkable.

A photo of a tacky child made Christmas bauble with glitter and starts stuck to it

Dead man’s teddy bear

After three days I make myself open the too-light box.

The sender’s name, marked clearly, meant I was forewarned

It carried a relic of a life.

A stained bear, complete with knitted jumper.

I half want to inhale and hope for smells long since leeched out by time

The disgust stops me as much as the knowledge it would be a disappointment.

The note with careless ease within:

“I rescued N’s teddy bear from being thrown out, we thought you might like it.”

Like? I don’t even remember this bear.

Where did all the others go?

There were rooms full of teddies, too many for a childless middle-aged couple.

You saw no shame in playfulness.

I’m still angry that the house was sold.

That all has changed in those rooms that brimmed with books

At the address I wrote all those letters to.

They must be gone as well.

Too many forgotten memories.

The odd snapshots stick, like the time you went to make me an omelette but scrambled by mistake.

There’s a photo in the box as well.

An old black and white one of you graduating.

All that youth and promise used up long ago.

“…we hope for rain” written as if I might care how the weather is for them

Or perhaps just for something to write and fill the space in the card.

More good intentions from those from your generation who got to spend more time with you.

I envy them that time but there’s also relief that they were the ones who did the dirty work at the end.

It was an end that took an age to come.

I wish I could believe that you are now with the other half of your heart once more.

It must be nearly 20 years you’ve been waiting to die.

You once said you envied my faith.

Perhaps it’s best you never learned there’s nothing left here to envy.

We talked often in my head, particularly on the darker days.

I liked to think we shared an understanding.

Too many ‘shoulds’ trip over each other.

The bottom line is I didn’t like what you became, that’s why I didn’t make the effort.

That empty hulking shell of human flesh waiting patiently to rot.

The piss smell that even the most expensive residential home in the wealthiest of countries still couldn’t quite mask.

The lights went out long ago, when she went before you.

I remember the light in your eyes in the old days.

How many still remember those days? The handful left ebb away a little each year.

You didn’t just love me, you delighted in me.

It made all the difference.

As I clack away here decades later I still take hope from your encouragements

You always praised my writing so perhaps it’s not all so bad as it seems upon rereading

These disjointed thoughts in prose with pretensions of being poetry.

You would have delighted in my girls too, particularly in the cheek.

I must try to do this more.

A dirty teddy, an old photo and an inane card.

That’s all that’s left.

Now I must return the hollow niceties with a thank you note.

Like a bug in amber I preserve my memories.

You two were the only consistently happy memories from my childhood.

So many books shared, the ways we played with words.

You still stay with me when I read.

I’m probably the youngest one left who loved you well

I expect I shall also be the last.

What is the proper place for a dead man’s teddy bear?


I carefully pack the bear back in his cardboard coffin

And put it with the other things precious enough to keep out of reach and out of mind.


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The potholed bumps announce I am back here once again

Back on these paths I’ve shared but more often walked alone

So many moments of meaning here:

Shrivelled last year’s acorns that rattle round my boot

Tacitly I greet the landmarks only I would know

This dear little holly just by that unusual bole




How often here, with a child or two in tow

To exercise the dog and walk imbalanced on every fallen log

Sculpting work and pleasure plans afoot

Each tree as known as faces of the old friends they have become

All those ants that tried to bite

And nettle stings, knee-scrapes and fights

That time a fungus looked just like a witch’s nose!

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The chiff-chaff that I learned to tell apart

The squirrels chased and great galoshing puddles jumped

Soggy picnics and “don’t you dare touch that!”s

The time I slipped just here and hurt my back

The leaves we tried to catch in vain

The den I never could quite fit in



This bank, that patch of moss

All the memories which signal loss

Mind that root, the one just past this fallen tree

“Please tell me when you need a wee!”

The times the dog would not come back, no matter how we called

The stormy days where creaking trunks harried me along

The hours and hours measured on the Fitbit app

Can ne’er do justice smell of sap


The various hands I’ve held along the way


Those real as well as real to me

The wind and rain that sang their sovereignty

The forgotten small talk at crossed paths

The ‘swamp’ where we say ogres live

And sticks for wand and broomstick play

This fork comes out by the holly I picked that year

(and pricked myself in equal measure)

The brief enchantment of bluebells by the thousand

And better ken of why in times long past the ice defying greens cried “MAGIC!”



Three times Dog has been bramble bled and rushed off home

And crossly kindly nursed to health so that we might return

Sweet chestnuts’ prickly cases strewn

And ditches full of autumn leaves begging to be rolled in, buried in

Scooped up and thrown with a confettied exuberance of joy


The sorrows sobbed and days when delight bounced in every step

Childish glee at cracking icy puddles


The first times I explored this way

Dropping mental breadcrumbs lest I stray

The good friends we found those owlets with


The days of anger, stomping its staccato out

The cool relief from summer’s ray

The very air of all those days and days

The footsteps just a little fraught in winter’s race against last light

Catkins and acorns gathered by little hands

To be later glued into a joyfully pointless mess



The gate where you stood and watched me drive away

The trees still speak of that sad day

There must be an injustice in all I have taken from this place

The solace it has freely given

How many times I’ve stayed “just a little longer”…

(Can’t I stay? Must I really go away?)

…To revel in this constant moment which is above all other

The joy of days when watches ticked away unchecked

This place: a playground; diurnal duty; sweet relief from life

Those fairy toadstools that we saw

(another “don’t touch that!” implored)

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Butcher’s Broom, I know you too

You live near the possibility of being

Without restraint or fear or shame


The thoughts and thoughts and plans, half realised, half forgot

The details plotted in this space, sketches of my future paths


I know you woods

I know your avenues of twisted barks

The rustle of the leaves caressed

That leap I make across the stream

That tree askew, yet wonderfully so

These little gems I’ve come to know

I’ve taken pride in sharing you with those who’ve walked here by my side

I’ve led a few to joy this way

For ‘wonder’ just follow this brook

(In wintry times at any rate)

Now my time to walk these paths is poor

There’s a new path leading me away

Though always going full circle here

I have also come so far

Always so much detritus from the forest floor

That sticks to clothes and reappears much later

In the most unlikely places



This time can only be of itself:

Future trips down memory lane will never be quite the same

As the vast banks of memories I’ll carry away with me

Such memories are not without weight but the burden is an honour

I have lived and loved in this place

Lived and loved so well.

The potholes bid me a bumpy farewell as I go on my way again.




Whistling in the rain – an autism anecdote guest starring Kipper the dog

I was going to tweet about walking the dog in the rain, about the joy of being able to go out and enjoy the countryside at a time when pouring rain meant that most people would be staying indoors. I was going to say it’s not that I particularly like the rain, it’s more about the lack of people. Then one thought chased another as they do and it became evident that I would need more and more tweets to explain myself and then I would feel guilty about hogging people’s timelines and so the only solution was to write it as a blog post. This may well be an example of autistic over-thinking, another tangential example is my friend, undiagnosed but I have zero doubt that she is ‘one of us’, who went to great lengths to explain to me this week that she had not copied me by having her hair cut short, it was that it was getting in her way and so on, it had clearly been worrying her that I would somehow think badly of her for choosing to cut her hair shortly after I had decided finally achieved getting mine cut. I actually hadn’t even noticed that she’d had it cut! I digress.

So I was going to say I don’t like rain that much, thinking about it however, there are a lot of things I do like about the rain. Many of these are sensory in nature. The sound of the rain is soothing, I am not alone in this as the existence of many YouTube videos testifies. The pitter-patter (surely one of the loveliest onomatopoeic words) of rain on my hood, on rooves and so on isn’t so dissimilar to white noise. Rain also means that the sky is likely to be grey and overcast, qualities not generally appreciated by people but for me a welcome relief. I’ve been struggling increasingly with (or perhaps increasingly noticing) glare and high contrast light. The muted light of winter is much more suited to my visual processing – I am currently awaiting assessment for Irlens syndrome, this may be a factor here. Even the way my sodden clothes clung to my skin was pleasant in a way not dissimilar to my weighted blanket. I would like to invest in higher quality waterproof clothing but Money is an area of life I’m failing at impressively these days. The smell of rain on the scorched ground is also a pleasant one for me, we haven’t had any rain for weeks and this summer has been warmer than usual. I’ve been struggling a lot with the high temperatures. I’m bored with my own puns about summer putting the ‘melt’ in meltdown, umpteen meltdowns later it’s just not funny anymore. I’m actually looking into moving home to somewhere with a generally slightly cooler climate – The Move is something I’d like to write more about in future posts.

Thinking all these thoughts and others about the rain made me think of one of P’s favourite books.  I did promise Kipper would be making an appearance in this post, partly because I think this blog would benefit from a few more pictures. Kipper’s Rainy Day by Mick Inkpen (what a fabulous name for a writer!) goes like this: “Kipper loves the rain because rain makes puddles. And puddles make… a splash!”


Let’s ignore the grammatical issues of starting a sentence with a conjunction… ok I can’t do that, let’s just state that this is clearly poor use of grammar but the book has other redeeming features like cute animals. The law of sod states that having criticised somebody’s grammar I will now make 53 grammatical errors which will be pointed out by other zealots. As a friend of mine is fond of saying (this may in fact be a quote from somewhere): the price of pedantry is constant vigilance! I digress again. The book is a lift-the-flap book and goes on to describe several animals who (allegedly) like the rain.


The story culminates with a cat who does not like the rain and a statement that the thing Kipper likes best about the rain is getting dry again. I have some issues with the idea of getting wet so you can enjoy getting dry, it seems rather like Allen Carr’s analogy of putting on too tight shoes just to have the relief of taking them off. My daughter however loves this book. I therefore know it by heart. She particularly loves the cat being sad about getting wet and then being happy again as Kipper dries him. I’d rather like to add a page to the book – “does anyone walking the dog like the rain?… This autistic does!”

I’ve not been having a great day. I’m in that awkward place where things aren’t bad enough to be labelled a ‘crisis’ in my head, things are just averagely bad. This would be an ideal time to draw on friends’ support but communication is also harder right now (as opposed to when things are Really Bad when communication is impossible – ha!) Yesterday, despite being very much in this not great mental place I managed to do some things which were hard. I went to a medical appointment in a new place with unknown healthcare professionals – always going to be stressful. I also took the dog for a walk on the beach, somewhere I usually love but has been out-of-bounds over the summer as there have just been too many people. I don’t cope well with the public. I was lucky yesterday, despite the weather being sunny there weren’t many people on the beach. This is what lead me to making the most of the rain today. There’s a real safety for me in rain, the more intense the rain the lower the probability of people being out in it. I’ve had a lot of bad experiences with people, strangers, shouting at me apropos of things I can’t begin to fathom, I don’t understand why this happens to me so much. I have so much anxiety about going outside, even in my own garden. Another key factor in wanting to move is my need to live somewhere far less populated than where I am now. It varies with how well I’m doing but often I feel leaving the house is putting myself at risk, at unnecessary risk. I do however love being outside, particularly on the coast or in the countryside with the dog, he is good company. The fresh air and exercise are good for me physically and mentally. There’s also the responsibility of dog ownership, I am compelled by this duty to walk the dog at least once a day. I know many people don’t bother and the world will not end if I fail to walk him but I love him and walking him does me good – generally, so long as people aren’t unpredictably awful.

So I have achieved a small thing, I have ticked the boxes of walking the dog and getting some exercise today. This makes me feel a little less terrible. It doesn’t solve all the things which were upsetting me earlier today but I did at least take a break from them which is something. Dog walking can be good self-care for me. I even caught myself whistling as I walked along. I don’t walk with the typical gait of a person walking in the rain – head bent, slightly crouching, trying to escape every drop. I relish the safety of being able to go out and I hold my head up with a genuine (as opposed to when I am passing) confidence. I was whistling contentedly in the rain for a while, for today that is enough.


(Pic of the faithful hound while walking on holiday recently).

On Naming Names

I stand and watch the other parent call their child by name as they encourage them in a park: “Come on Isabel… well done Isabel!… Isabel where are you hiding cheeky girl?” This is a thing I cannot do. I can physically talk, I have verbal skills, I don’t stutter, externally I am usually able to pass for neurotypical. Yet I cannot use my daughter’s name, the word is there in my head and yet it’s so hard to get it to pass my lips. This leads to all sorts of linguistic acrobatics until I find I simply have to use it. The responsibility of choosing a name for my child was particularly hard for me, particularly as there was a time limit on this. I find using her name is not so bad somehow if I’m doing something like taking her to the doctor and checking in for the appointment, I expect to be asked for her name and that I can manage, perhaps because it is compulsory.

It’s not just my daughter’s name I have this issue with. For me using people’s names feels similar to maintaining eye contact, I can do it, I can force it but it’s never comfortable. Some autistic people have described making eye contact as similar to trying to look into the sun. Nicknames or things like job titles or the role the person plays in my life feels somehow safer ground, something I have a little more control over.

It was in fact this issue with my daughter’s name which lead me to realise I was autistic. (Forgive me if I’ve described it before on this blog, I don’t tend to reread posts once posted). I was reading Look Me In The Eye by John Elder Robison. It was by no means the first autistic autobiography I’d read, I considered myself pretty well clued up on autism already. John described how he couldn’t call his new baby brother anything other than the nickname he’d given him – ‘Varmint’ if memory serves. This rang such a resounding bell with my experience with my then baby daughter that I seriously considered for the first time that I could be fully autistic myself. Until that point I had believed that I was just particularly empathic (!), that I could put myself in autistic people’s shoes fairly easily because of my experience with depression and anxiety.

A few of my ex partners complained that I never used their name. I’d always use terms like ‘hun’ or ‘love’ instead, never the name. Going out on a limb and making assumptions about how others might feel here – I think it’s a bit like if I were to call my mother by her first name instead of ‘Mom’, that would be weird for most people right? (Yes I’m a British person who says ‘mom’ instead of ‘mum’,  it’s because she called her mum ‘mom’ as they lived in a ‘mom’-using country when she was growing up, I do however always refer to her as my mum as this is what people expect).

So people end up with different labels which I use to describe them: my childminder, my friend who is a teacher, my pregnant friend, the friend I go to the pub with and so on, bizarrely referring to someone as somebody’s something like saying ‘Bob’s friend’ or ‘Mary’s sister’ isn’t so bad, a further degree of emotional separation from the name perhaps…  For the most part this doesn’t bother me, I’ve far greater problems than this strange inability to use people’s first names and I’m well used to finding workarounds. It does bother me with my daughter though. I know it’s ok for me to say “Well done darling!” or “Come here you little hooligan!” instead of using her name, I’m sure there’s many other things which are far worse about my parenting. Yet it niggles and I have a sort of envy of people who can so freely call their child’s name across a playground.

I have some hope. As with Robison my nicknames evolve over time – a quick google tells me I was both right and wrong, his kid brother was originally nicknamed ‘snort’ and then later ‘varmint’.  My daughter whose original nickname was ‘Piggy’ has now become an approximation of her real name which she instigated as a way to refer to herself while she was learning to talk. Now she has learned to say her name properly but the approximation has stuck. I’m aware it’s not her real name but it’s as close as I can get for now.  I still refer to her as P online, mostly for ease and anonymity and she is still Piggy with friends who have come to terms with this nickname – some people have been very judgemental about this name, saying it’s unkind etc, like I had any choice over what my brain chose to label her, it suited her as a baby who was quite the frequent feeder.

These issues of identity mirror my own in some ways, I take pains to protect P’s identity online as I do my own. There are some trusted people who know my real name as well as this alter ego, they are few and I plan to keep it that way. The anonymity gives me a freedom to be more honest, however unsavoury that can be at times.

On being ok


What is this ok-ness thing of which you speak?


So I’ve spent much of the last 10 months being mostly not so ok. Sure there have been some good times in between the bad but for the most part it’s been a struggle. I write mostly about the bad times, it’s a way for me to process and I hope that sharing my experiences may resonate with others. I’m sure I’ve said it before and I’ll say it again, there’s a tremendous comfort in being in the company (including virtual company) of people with similar experiences, I think of this as ‘same-boatness’. Now I’m doing ok I want to try to write about it, try to somehow capture it in the hope that when my mind is full of shitfulness and the good times are impossible to conceive it will somehow still exist, somewhere in the ether.

I’ve been told it’s very hard to write happy poetry, perhaps happiness is just difficult to express or writing is more of a tool for coping with the negatives. I spend so much of my life struggling to survive through one internal crisis after the other. I’m not convinced I’m much good at being ok, after all it doesn’t seem like I’ve had much practice and it never seems to last for very long.

What do I even mean by ok? I’m feeling pretty good about myself at the moment because some good things have been happening in my life lately. Work I’ve been putting into things has paid off. There’s a real danger of this sliding into self-aggrandising narcissism, the over confident ‘king of the world’ side of me which can feel so good after all the self-hate but is not something I particularly like in myself and I don’t imagine is much fun for those around me. In a life of extreme emotions it’s hard to find a balanced middle ground here. Self-love can also become something to criticise myself about and rapidly dissolve into self-hate.

I keep coming back to the word ‘enough’, in all aspects of life I have to fight the perfectionism or apathy and try to find a middle path to being a good enough parent, working hard enough, being satisfied enough with what I can achieve despite the limitations.

Have you noticed how despite attempting to write about being ok I keep coming back to the negatives?

Perhaps being ok is more about the absence of feeling terrible? Perhaps it becomes more manic and high because I’m aware it’ll be short lived, worse times will always follow and this is outside of my control. I’m not sure I know how to be calmly happy. Happy is a bizarre concept, I don’t really understand it.

How can I express my current ok-ness in a way that I might believe when times are worse? In the bad times I try to congratulate myself on the minor achievements, often just surviving another day without a meltdown. I’m not sure I’m even comfortable with being ok, I’m very used to depression and anxiety being central to my existence, if nothing else they are familiar, like a family member you don’t really get on well with but you’re so used to it feels odd when they’re not around.

It’s not that I’m any less autistic than I am during the bad times but that I am more able to cope and autistic traits are toned down a notch. So I’m sleeping better, getting more exercise, more able to cope with things like changes to routine, sensory stuff is less overwhelming, I am more able to control the overthinking and let things go, the recovery time from socialising is shorter… it all gets very chicken and the egg as it’s impossible to work out the causal direction here when all these things are so entwined.

So what happens next?

It might seem odd planning for how to cope with the good times. I see it like muscle memory in sport, when you play well and try to work out what it was that created that result so that you can replicate it in the future. I know that much worse times inevitably lie ahead, that is just the way of things. I still need to do a lot of self-care to maintain my current ok-ness. Often I forget this, get caught up in blissful obsessive overdrive and then am suddenly wiped out. So I have to make a conscious effort to continue monitoring my anxiety levels, sleep etc and adjust my expectations accordingly. This is by far the longest period of ok-ness I’ve had in nearly a year. I’m interested in seeing how long I can maintain it and seeing if I can notice what tips me back into the hugely negative spiral. At the moment I have much more control of things in my life than is usual (again is this the result of being less stressed or am I less stressed because I am more in control?)

I feel a little disconnected from my friends who continue to face daily battles which are currently far worse than my own, I’ve lost the perceived reality of the constant negativity. Logically, I know, I remember how it feels but I think like any remembered pain the memory isn’t quite accurate, I don’t get it like I do when I’m in that moment – psychological self-preservation here I think, forgetting the pain is a handy skill. I know that there’s no way I can bridge the chasm between my ok-ness and my future (or my friends’ current) shitfulness. I can’t lead anyone away from that darkness but I can try to testify that light exists, at some points things are easier. Having said that, I know that in the shitful times this ok version of reality will be impossible to comprehend. Just as now I look back on previous posts splurging pain all over the page and cannot really fathom it, the positivity will also be hidden from me again if I come to read this post during a darker time.

So for now I am ok, perhaps even bordering on pretty good, it is enough.

The bad fight

Punch drunk I reel, stagger, desperately try to regain my footing. I’ve been fighting for a while now, I’m not sure how long. The impact of previous blows smart still as more come in, buffeting me from one side to the other. Somewhere in the distance is rest and balance, they seem far off, hazy, not quite real. If only this were all real, if this were some physical illness – what a terrible thing to wish on oneself – rather than the silent, invisible fight against the Black Dog and Rabid Wolf tag team who personify my depression and anxiety. Being able to pass for someone who’s not completely fucked in the head is just another burden, a heavy sack of responsibility that I can’t put down. I don’t deserve to share the load with those who care about me and they don’t deserve to take the strain. I cast about for the solidity of reason, searching for causes and explanations – if only I hadn’t done this, perhaps if I had done that I wouldn’t be in this place again? Reason however is a mirage and as I frantically surge towards it it becomes another mockery, another defeat. I don’t want to fight any more. I want to give in, to give up and lie down and die. I punch myself repeatedly in the head, or at least I would if only I had the nerve. The urge to hurt myself becomes another whip to torment myself with, the self-judgement of others’ judgement bearing down and suffocating me. I let my child pull my hair, she laughs, there’s no malice there. I want to say “I’m sorry darling, sometimes Mommy feels so sad and wants to hurt herself”. I hate that in the future she’s likely to have to endure the fallout of my battles. I feel guilty for hoping that her sweet kind nature might be something I can lean on in future, that after a fight she’ll bathe my wounds and hold me while I cry. She deserves better than that. This is the way things are.

Musings on identity

A few weeks ago I heard someone say autistic people often struggle with the concept of their own identity. My gut reaction was to baulk at this, I thought of the wonderful autistic communities, diverse yet unified by experience, that I am privileged to call myself a part of. I do feel in many respects defined by autism, it pervades every aspect of my being.

Yet as I contemplate the timelessness of being, that all things that were and are and will be are one, I also feel that I am not autistic. Some time ago now I wrote in my description of myself for this blog a list of labels but then added that none of these defined me. I simply am.

The more I look for the profound the more I miss the profoundly simple. My child, so young, knows far more than I. When I think of my past, I often feel as if I have had many incarnations in this life. Many different beings who have defined themselves by relationships, jobs, interests and so forth. This leads me back to the Fight Club quote below.

fight club

I see that all my lives, the different ways I have presented myself, were nothing more than outward clothing, the fucking khakis that I mistook for my self.

In that case what am I? I am one of many. I am a person who must use words and labels and images to draw on the canvas of life to express myself. The paints I use for this still-life are not the actual fruit but merely a tool. That is not to say that any of these things are wrong or bad or mistaken, tools in themselves cannot be such things, words can be no more than words.

It is not wisdom or learning, or even experience that defines me. The only reality is this moment. This moment is all moments. It is eternal. Time is meaningless.

Time is the greatest enemy, or feels as though it is. All goodness and love is destroyed by it except in the memory which will also one day be defeated by time. I need to let go of this concept of life as a chronological continuum. Underneath all the clothing my naked soul is the same. Everything that I shall be I already have within me just as I have the eggs of unborn children within me. I do not know what that child will look like, it does not matter for that is in a future which does not exist. In this moment there is no I, I am and yet I am not. I am a part of a larger collective, a vast hive of bodies and animals and nature and life and molecules. Inwardly also my infinitesimally complicated mind thinks and double and triple thinks every possible permutation of thought.

Is this a spiritual matter? Does that question even matter?

There is no teaching here. Nothing that is important can be taught, it cannot be acquired at any price. I would like to get to know the actual self, not the silly way it can present itself.

My troubled mind often seeks peace. I suspect the way to achieve this (how does achievement work if time is removed from the equation? Whatever achievement there is already is) is by practising being with myself. In my calmest moments I am me, I see the naked truth of my being and I do not flinch. Like many I try to hide from myself, afraid of being alone in the silence of my self. I drown it out with distractions, shallow aspirations, all manner of meaningless dross to avoid simply being. I do not need to travel to remote places to be with myself (although this seems to help). I do not need to think deeply to be with myself.

The word tools available to this human form are not sufficient to express my being, they can only hint at the truth. The real expression is in the being itself.

I am already complete.

I am.



Stream of shitfulness

The self-loathing is strong this morning. There are physical signs that all is not well in the kingdom of my mind, the toothache and ulcers caused by bruxism, the difficulty sleeping, the excoriation, they’re all just tell-tales of a shitful mind.

Shitfulness is like mindfulness only shitty. It tells me that my dumbfuck brain is being a twat again, it’s making me feel all this shit, it’s making me hate myself even though on a good day I believe that I’m ok enough. I am so angry, so absurdly angry with myself for feeling the way I do. I desperately want a reason, some explanation for all the pain. Mostly there is none. All that’s there are a million additional layers of self-castigation, hating myself for hating myself. I know all this will pass, as much as it feels as though I will always end up back in this place I know there are fucking puppies and rainbows over the horizon – shitfulness taints every ray of hope with its lens of excrement. This peace, happiness even, is not real, not to me right now. I know it but I can’t feel it, I can’t make myself believe it when my only faith is in my own shitfulness. Logic does not apply, as much as I yearn for reason there is none here. I try to step outside of the whirlwind of feelings, to let the storm batter my mind and wait for it to pass, but I cannot accept being this way.

There’s a comfort in shitfulness, it’s a known quantity at least, there are others who know this place with as much familiarity as I.

Every day I work, work really hard at being ok, at being ok enough to mother my child, take care of my basic needs, be good enough. This disability of fuckedupness is hard, it sneaks up on me when I think things aren’t so bad and it tells me I am terrible, that I ought to be able to do things that are so far beyond me in the present you may as well ask a fish to ride a bicycle. I judge myself by the standards of those around me, the ones who don’t experience the world in the same way. I hear their thoughts as they see me, surely this person is capable of feeding herself, of dressing herself? Whyever not? I make no sense to them, nor to myself.

It’s a kick in the guts that despite my long hours of working at self-care, of trying to learn how to make myself well, I still fail. I still come back, tail between my legs to this wasteground of thought. I even know things which might help (they’re tricksy things which do not always help and may also make things worse) but I’m afraid to try them. I’m afraid of not being here in this familiar dungeon, like Stockholm syndrome perhaps I stick with what I know, what I am well used to.

I want to punish this mind, this useless hunk of meat that is my body and brain. These ridiculous synapses and chemicals which hurt me so much. I want to beat them until they learn to behave.

I have come to believe that the ultimate goal is this life is kindness. This is the one art I really aspire towards but in order to be kind to others I first need to learn to be kind to myself. I need to forgive these feelings, accept them as a part of who I am and listen to them with patience and without judgement. This is the way that it is, the way that it has always been and most likely the way that it always shall be. I want to see these passing thoughts and feelings as the weather systems that they are. They are me and yet they are also not me. I am not my thoughts, no matter how much they try to tell me what I am.

I will work now, ‘real’ work as opposed to self-care (ahh more judgement there!) I will lose my train of thought in doing. I will lose the pervasive shitfulness. I know that it is there, it is always there, I will return to it many times in this lifetime and whatever lies beyond.

Culpably obsessed – the difficulties of obsessing over a person

Why write this?

I think this is an area of autistic experience which is under-represented. I imagine this is to do with the stigma surrounding stalking behaviour. It is also a deeply emotive subject and the sort of thing which experience has taught us to keep private so I think breaking this taboo is difficult. Why talk about it at all? Because this is something which causes a lot of pain to many autistic people like myself

– here’s an example http://wrongplanet.net/forums/viewtopic.php?f=3&t=144092&start=0 – and so I hope that my attempt to better understand this issue may help others.

I’ve been thinking about this quite a bit recently, particularly because an autistic friend has really been going through the mill of being obsessed with someone who doesn’t reciprocate those feelings. I’ve been there, it’s a really sucky place to be. Why do we do this to ourselves? Firstly, I’m not convinced we really have all that much choice, the saying “you don’t choose who you fall for” is especially true here and the autistic need to fixate on something is inherent to the condition.

So what do I mean by obsessions with people?

We know autistic folks do like a good obsession (or ‘special interest’ if you feel the term ‘obsession’ is pejorative, personally I have no issue with saying obsession). We know that these obsessions can get in the way of other things where the strength of obsession makes everything else pale into insignificance so if we’re asked to do something not relating to our obsession it can be really hard to drag ourselves away from it. While it clearly relates to the ‘restricted or repetitive interests or behaviour’ from the autism diagnostic criteria there’s often a comfort in obsessions. So even though this is something which is considered negative under the medical model of disability it can also be a great strength and I would argue the intensity of interest is directly responsible for many of the great talents of autistic people.

Obsessions with people however are different. Sometimes they can be with a celebrity or historical figure and I’d say these types of obsession are safer as they are simply harder to act upon unless we happen to have access to celebrities or a tardis. When the obsession is with someone you know in real life things get complicated. Unlike obsessions with something inanimate, the subject of the obsession may feel uncomfortable if they know they are the subject of such attention whereas Klingon grammar (or whatever floats your boat) simply doesn’t give a damn how often you think of it!

So what’s going on?

I can’t help but seek more of an explanation than it’s just an autism thing – autistic shit happens (this is probably related to my obsession with understanding all things autism!) Thinking about obsessions brings me to OCD. I’m no expert on OCD so I’m happy to be (kindly) corrected if anything I write about it is incorrect.

“OCD often goes undetected in persons with autism and Asperger syndrome. This is largely because of the difficulty of delineating the symptoms of OCD from those of autism, since rigid ritualistic behaviors form an integral part of autistic symptoms” (Ghaziuddin, 2005, p.160)

To my understanding the difference between OCD behaviour and autistic restricted/repetitive behaviour is that autistic stuff is enjoyable and the OCD stuff is something the person doesn’t want to do but is still compelled to. People obsessions definitely seem to often fall into the OCD category. I’m not saying there’s no pleasure in people obsessions, it can provide an escape from reality, it can provide comfort and control (if only imagined) in a confusing world, it can even be a useful tool for motivation – this person will think more of me if I work really hard… but too often the main product of it is misery and perceived rejection -why doesn’t that person feel the same way about me? This can feed into depression, particularly when combined with catastrophising – they didn’t reply, therefore I must be a terrible unlovable person, I should kill myself.

How are people obsessions perceived?

The research literature seems to focus in on stalking behaviour. Understandably stalking is a concern for the public and may lead to an autistic individual breaking the law. What little I know of autistic people coming into contact with the criminal justice system doesn’t fill me with optimism. Like any obsession it can be misunderstood and there’s many stories of an autistic person taking an obsession too far and breaking the law to get something they ‘needed’ for their obsession, here is an example https://en.wikipedia.org/wiki/Darius_McCollum

I feel that to some extent society sympathises with such people, I can even imagine NT friends describing such crimes as kinda cute *shudder*. When the obsession is with a person however I think the public perception immediately recoils in horror and mentally tags us with terms like ‘DANGEROUS!’, ‘PERVERT!’, ‘PSYCHO!’ To some extent this is understandable as we all fear what we don’t understand. I suspect research in this area is in danger of missing those of us who become (serially) obsessed with people but don’t act on it in ways which lead to being arrested.

How does it work?

I think if we are to support autistic people with obsessions with people we need to better understand this behaviour. So how does it work? I’d say it works in the same way as other obsessions. The subject of interest becomes all-encompassing and can take over every waking thought. From an early age, perhaps about aged 8, I’ve certainly had periods of my life where this was the case. I’d withdraw into a fantasy world involving that person and repeatedly replay scenarios where I somehow rescued them and gained their love. It seems clear to me that this is something of a coping tool, shutdown from reality is a great way to escape the demands of the NT world. In my mind I was in control of the situation and I could make the other person behave in any way I liked. I’d like to emphasise that obsessions with people can be sexual but they can also be more platonic, I don’t think sexual desire is a necessary ingredient here but some of the research suggests that this is a compensatory mechanism to fulfil sexual or social desires (Stokes, Newton & Kaur, 2007).

Mostly harmless?

Perhaps the key to whether an obsession is harmful to others is when the autistic is compelled to act on the obsession rather than just devote too much time to thinking about the person. Some actions like googling the hell out of someone until you’ve found every last online mention of them and know an unnerving amount about their namesakes is relatively harmless provided you have the skills to keep whatever you dig up about someone to yourself (I do feel everyone has some responsibility to be aware of what they leave lying around online for people like myself to find!) Similarly stalking their Twitter feed, Tumblr etc doesn’t usually create too many issues (other than further fuelling the obsession) provided you keep your thoughts to yourself.

Is honesty really always the best policy?

One conflict which many autistic folks seem to have trouble with is the idea of not sharing the full truth with someone being tantamount to lying. This is clearly an area where being open and honest about your feelings is dangerous, it can lead to all sorts of misinterpretations, destroy trust and friendship, even lead to criminal allegations. I’d say the autistic needs to try to see the bigger picture (easier said than done!) that often more harm than good comes out of revealing such feelings to people, particularly when they are huge emotions which can scare people.

How do we define what’s appropriate behaviour?

There’s a very fine line between appropriate social or romantic behaviour and inappropriate behaviours of this sort. I often find myself asking the people in my life to help me define the boundaries of relationships because I cannot always understand these social rules. My therapist gave me a useful tool by suggesting I ask myself whether a person was a friend or just friendly. I have a habit of misinterpreting friendly behaviour for friendship. As a child I considered my teachers my friends because I felt more able to communicate on their level than with my peers. I did not understand how my teacher could not really also be my friend. Obsession takes this problem a step further as we can read too much into friendly behaviour. I use to work as a carer for a guy with autism who wanted every carer to become his girlfriend, he didn’t see the problem with this or how uncomfortable it could make us. Similarly I’d often view a teacher being kind to me or complimenting my work as a sign that we were friends rather than friendly.

Impact on autistics

Despite the persistent myths that we don’t feel anything, autistic people are no more immune to heartbreak than anyone else and there’s a reason so much artistic expression is devoted to affairs of the heart. My experience and reading make me lean increasingly towards an Intense World Syndrome (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518049/) understanding of autism although this does not (yet!) have much standing in academia. Something I think ties in really well with this reasoning is the concept of Intense Empathy – see @TheoriesofMinds ‘s storifies of conversations on this here: https://storify.com/theoriesofminds/autism-and-intense-empathy

Following that line of reasoning heartbreak is virtually guaranteed. I’ve been working with a young autistic child who recently inadvertently upset a classmate, the classmate swiftly got over it but the autistic child was devastated for hours that he had upset someone. To me this is a typically autistic experience. I would argue that as well as sensory differences we are also emotionally hypersensitive and that shutdown is often the result of emotional overload.

How to help?

So the big question raised by all of this is how on earth can you support an autistic person going through a people obsession? OCD is generally treated by SSRIs (anti-depressants) or CBT (Cognitive behavioural therapy). I imagine psychologists would look at the extent of the detrimental effect the obsession is having on the life of the individual and on that basis decide whether intervention is necessary (or rather whether the funding can be justified). For the majority of us however people obsessions do not reach the point of attempted suicide or arrest, many of us are aware of the consequences of obsessive actions and so we protect ourselves from these extreme outcomes. Yet that doesn’t mean there isn’t still a problem, the mental health implications of such obsession can be serious and long term, particularly where it often builds on other negative experiences. So what to do?

I think the key things people could do to help here centre around acceptance and safety. Society’s attitude to obsession is (understandably) one of fear. However if your autistic loved one is going to be obsessed by people, they’re going to be obsessed by people, no amount of telling them it’s wrong or silly is going to change that. When I am fixated, no matter aware I am that it is not healthy, I cannot prevent myself from thinking those thoughts, I’ve stopped even trying. So I think it comes down to keeping people safe and this isn’t necessarily limited to children and adolescents. We often crave clarity so some clear rules about what is acceptable and what is not can be really useful.

For the autistic person I’d definitely recommend connecting with other autistics who are going through/have been through similar experiences. I think the idiom ‘it takes one to know one’ has some value here and I think it’s incredibly difficult for a neurotypical to really understand these things. As with so many autistic things NTs often say “oh I get that” and in this instance I can imagine them saying “oh I had a terrible crush on that person” but so often it seems to me they don’t really understand the extent of feeling, the analogy I keep coming back to is what they feel as a wave we feel as a tsunami. Some things defy description but that doesn’t mean you shouldn’t respectfully listen if the autistic person want to (needs to!) talk about their special person.


NT: “oh yeah, I get that all the time…” No, you don’t.

What is real anyway?

At risk of veering into other psychological conditions here I think it’s easy for obsession to drift away from reality. I’ve certainly been convinced that people have been utterly perfect in every way only to discover, to my cost, that they were far

from perfect except in my imagination. We know that autistics have difficulties in predicting the behaviour and motivations of others, so obsessions with people can lead to some dangerous places. We’ve talked a bit already about stalking behaviour but I think there’s also a link here with the reported association between autism and abusive relationships (I couldn’t find any research supporting this link but do let me know if you know of some). It’s clear how being so desperate for someone’s attention that you will do anything to please them, you will change to become whatever it seems that person wants, can lead to those subjects of obsession

abusing this. For me being obsessed with people did sometimes lead to a relationship and several decidedly unhealthy ones. Caught in the midst of obsession though it’s very difficult to see people for who they are and the reality very rarely matched my idealised fantasy of the person. Several people report cutting off friends and other interests as a result of a person obsession – here is an example https://aspiewriter.wordpress.com/2012/12/14/love-or-obsession-when-a-person-becomes-an-aspies-special-interest/

I am slowly learning that I need to look to the opinions of others regularly to check

whether what’s going on in my head calibrates with reality. After I finally ran away from my last ex, several friends who I had not been allowed contact with while in the relationship, revealed that she had scared them but they couldn’t tell me (and I would not have listened) as I was so very into her (admitting that now that I’ve seen the reality of what my life became makes me feel nauseated).

Love or obsession?

The other sort of people obsession is the unrequited love scenario. I don’t feel qualified to comment on the distinctions between obsession and love, I’m not sure I understand the difference. I do know that while in the grip of obsession it feels like what is described as love, in a very extreme – can’t eat, can’t sleep, can’t think – way. It feels very permanent, and the ability to imagine not feeling that way about the person is simply unfathomable. Experience has taught me however that in time (and sometimes this takes several years) I will move on from obsessions. This

causes all sorts of doubt around relationships though, if I cannot trust my feelings to be as permanent as they feel how can I ever build a future with someone?

What is very real is the in the moment experience. The consequences can be devastating even when they don’t involve breaking the law or being taken advantage of. Unrequited love is incredibly painful. To have your happiness and sense of self-worth depend on someone else is a horrid place to be. The person can become like a drug and despite the ecstasy of interacting with that person in the moment this can lead to withdrawal and severe depression afterwards.

Be kind

So I’ve written and rewritten and edited this post but ultimately I don’t have any great pearls of wisdom to resolve these issues. The best I can hope for is that by reading this it will encourage you to have more empathy for autistics coping with people obsessions. Be kind to us, don’t blame us for having feelings we can’t help, feeling this way can really suck.