Living with PTSD in our home

To understand how I have experience of PTSD there is a preceding blog for #SB4MH, Child Abuse-a parent’s perspective – but perhaps the title gives it away.

My home, containing two adults and three children, is full of acronyms: ASC (Autism) 4/5, ADHD 3/5, DCD 1/5, PTSD/cPTSD ?4/5. There are also more creative diagnoses including Adjustment disorder, social anxiety, dyslexia, hyper mobility… we read like a diagnostic manual. None of them are easy to explain in a casual conversation when you leap out of the car in a disabled space with two working legs, but they are all disabling in their own way.

These diagnoses can be useful, as they give professionals a road map for communication and helps us reach greater self understanding. They can also be problematic, limiting others’ view of our potential outcomes. It can be exhausting on a personal level to be constantly monitoring which behaviours of ourselves or our children might be affected by which diagnosis. What you challenge, where to support, what to discount…. everything need analysis.

The reason PTSD has a question mark is because it has been difficult persuading the appropriate professionals that Mr Hunt and myself need a diagnosis. It is established we are traumatised and in my case that it is complex, but ongoing properly funded support and treatment relies on a diagnosis. This in turn relies on getting to an appropriate professional who can make the diagnosis, and the gatekeepers to these seem to think we are managing and therefore there is no point. We would question what managing looks like.

I see a psychologist, who has supported our family since 2017. Most of what we do is talking therapy. With my eldest, who has a formal diagnosis, she has tried EMDR, but they were not ready to access it. I’ve tried it also with her, but I struggle to visualize what might happen, probably because of my social imagination issues to do with my autism. She is very supportive of just how battered myself and Mr Hunt are, and also how many complex things from my growing years affect how we have developed different handling of the situation.

There is a quote from Black Beauty which I can’t lay may hands on right now. A passage about selling horses. The price relied on the height of the horse, so to make sure a horse couldn’t be measured properly, unscrupulous dealers would prick their whithers repeatedly, so when the innocuous measuring stick was offered up, they would dance away in fear.

That is pretty much how I feel. Innocuous things can trigger me. And different innocuous things trigger all of the other members of my house, bar the six year old, who has grown up with us all jumping at irrational shadows.

Complex PTSD comes from repeated trauma, often from someone in a position of power or responsibility, commonly a parent but also teachers and peers with whom you desire to build relationships. There has been some discussion between my psychologist and myself as to the links between autism and PTSD of this type. Constantly failing in social or educational situations leaves you battered. Then failures to successfully enter the job market as your condition is not accommodated. When new things hit you, you already are receptive to the trauma rather than resilient to it. The poor emotional and physical learnt responses kick in, even for individual events that for a resilient individual would hardly register.

Feeling isolated and cut off from relationships, as though no one understands you, are symptoms of PTSD, but also potentially symptoms or descriptive of autism. Disassociation is for some people on the spectrum part of their normal. When this is the case, diagnosing PTSD as a separate condition can be difficult.

The main symptom we all share in our household is hyper-vigilance. Being alert all the time and the utter exhaustion that comes with it that makes sleep feel like defeat. Sleep is guilt-inducing. It is rare for any of us to get more than 6 hours sleep… and because the children are exhausted sooner, those six hours for them might be 8pm till 2 and for us might not start till later. That means our sleep is broken by own our insomnia, our childrens’ insomnia and nightmares, intrusive thoughts and each other. We take it in turns to try to catch up when we feel able to sleep, but fit this round work and parenting.

Hyper-vigilance isn’t just being on edge all the time looking for potential abusers grooming their way into our lives.

It is starting fights with shadows about things with only tenuous links to the subject. The PHSE curriculum in school. People who rely on a DBS (criminal record) check to show someone is suitable to work with children. Fights I don’t have the energy for. Some of them justified. Maybe. I can’t tell anymore.

It is not being able to let go of the levels of supervision we were required to have for years, because if it were needed then (it wasn’t) then when would you remove a safeguard now? The idea that because a social worker who has spent 30 minutes with us thinks we are safe with one care worker working alone because that’s all they will pay for, doesn’t mean we can ever settle for that again.

For my eldest child, there are nightmares that have us sitting up sipping tea at 3am and defending their in school exhaustion over aggressively. The words “you just don’t understand” could be true, or they could be the isolation of PTSD. His concentration and attention are shot to pieces. Is it the exhaustion, the PTSD, autism or inattentive ADHD? Does it matter?Flashbacks that leave him reeling and take him by surprise when his mind wanders in class.

For my middle child it is an inability to trust anyone other than me. A need to press against me, sleep with me. I can’t count the nights I lie awake holding him sleeping in my arms.

It has been decided therapy rather than medication is best, but at the moment no-one is paying for them to access anything and nothing is available through the local NHS commissioned services. At the moment that means they are on their own going through it, and we are on our own supporting them. Maybe that is ok? Maybe there is nothing practical we can do beyond loving them?

Mr Hunt is locked down. Getting on with everything and unable to relax unless he is on a boat away from us all. I want to help, but I don’t know how. He has moments when he grinds to a halt and other symptoms I’m going to let him keep private. But there is no doubt he is in trouble.

I have panic attacks when I have to deal with the professionals involved in organizing the children’s care and moments of dissociation so strong the world turns 2-d, like I’ve stepped into a cartoon. Sometimes I can’t leave my bedroom, let alone the house. I do take medication, and it improves things enough to let me keep going.

The children are improving. The nightmares are coming less frequently. The sleep was poor before the PTSD and now they generally stay awake later and sleep more in line with Mr Hunt and myself. Pity we still have an 8pm till 4am six year old.

We complained that we were unable to get support. The government ombudsman awarded us £250 for grief counselling. That paid for one hour and 40 mins of time with a general counselor. Thank heavens for private insurance through Mr Hunt’s employer, as the money stretched much further as co-pay and this has let us keep the psychologist who already knew us and is specifically trained and experienced in autism and PTSD.

Getting better is the dream. Getting there is an uncertain road.

A Staple of Life

Kiss the lips to see who else is being Kinky this time!

The thing I think I love best about the online community I have stumbled into is the acceptance that everyone’s experience is different. There isn’t one path or one goal.

It’s easy to get swept away by mainstream portrayals of sex and especially sex with more kink than a satin blindfold. It can be so many things: beautiful people madly in love; an exotic adventurous activity with no emotional ties; weaponised into a control mechanism for individuals or groups.

What sex rarely seems to be, in media of any type, is slightly old, exhausted, baggy people, muddling through while trying their best to support the people the value most. But that is who we are, me and Mr Hunt.

We hadn’t planned our lives to be this, and our path to a moderately adventurous sex life based on a broadly D/s dynamic seems even more pedestrian. Sometimes we lie in bed and plan a trip out to something openly sex positive that we rarely get to. Sometimes I twist my embarrassed tongue around the description of something kinky I fancy trying. More often I blurt something out when we’re driving somewhere and eye contact or detailed discussion is impossible.

I understand some people know their sexual orientation from very young and others don’t, so I guess similar things apply to how you like sex. I knew I was interested in the power balance and sensory aspects from before my first real sexual experiences. I remember feeling weirdly excited reading stories about dystopian oppression. I developed crushes in school on people who were “of a type”. Gender didn’t matter. It was about an attractive, magnetic, confident persona. Something about the way they looked at and spoke to people. My best friends from primary school on have always had what might be called dominant characteristics.

A particularly memorable early experience involved a good friend and a heavy, spiky hairbrush. I learnt in various ways to appreciate the endorphin release of good pain.

But how I got from there to this point in my relationship with Mr Hunt, I’m not really very sure. Tiny steps. With the occasional leap.

Mr Hunt sort of came with me for the ride. But as I said, I crushed on a type, even if he didn’t realise it when we first met and I’m a very lucky lady that he has embraced and researched and thrown himself into every experience I’ve expressed an interest in. It takes a special sort of man to take on a lady who knows kink is a staple of her life, with only slighty spanky porn as his reference point. And he is very special.

I wrote and self published a couple of ebook shorts while the kids were tiny and sleeping in the day, so to be encouraging, and because he knew I’d never go without a shove, he bought me tickets for Eroticon in 2017.

A year on and I went again, with much less shoving. And because they are astoundingly generous with their time, energy and knowledge, there were things to try from Molly and Michael’s toy bag. There was a medical stapler ordered on a very quick shopping app and delivered to a rather bemused Mr Hunt before I even get home.

This is new, because unlike most toys we’ve played with where you can vary intensity, there is either a staple sticking into your skin or there isn’t.

And in a nutshell for me, that is the appeal. It is leaping off a cliff. So much of this adventure can be done hesitantly. But sharp things that pierce the skin are in that split second a done deal.

If anticipation is part of your enjoyment then staples are good, because there is a bit of prep and (if you go for a design) that can be drawn out in touches to sensitise the skin while mapping and planning, as well as making sure the area is clean.

There is also a wide range of placement. Within a range of variance, I guess a large percentage of marks end up on the bottom or backs of legs where you craning in a mirror to see them. Staples can be placed where you can see the immediate aftermath or watch, or be made to watch them happen.

I love the aesthetic of piercing. Of everything from a staple to full on body mods. But when you’re one half of a slightly old, exhausted, baggy couple, with kids and middle class job expectations there is only so much you can change without issue. Staples are great for that. There and then gone so much more quickly than bruises, but with a massive ‘in the moment’ visual rush. I love the look of my skin with metal sticking through it.

I love it even more that I submitted to the person I trust and let them do it. That rush that comes from letting something happen. Of letting go of the decision. Each staple placement is different, and just because one went in easily with little discomfort, the next one might be more painful and I don’t have to worry about it at all. Just be. This hits a particular button for Mr Hunt also.

The trust is deeper than that squeeze of a trigger. Because of the structure and needs of our family life (social workers have inspected my house including the bedrooms again today), we have to be seen to be sticking to a societally approved life plan. In my mind, there is a sort of heirarchy of acts that have a greater societal taboo that we can easily get up to and that appeal. A smack or a slap on the backside is at the bottom of list. Staples come nearer the top. Breaking the skin. Letting or encouraging this to happen shows I willing to break boundaries as an offering of trust. Mr Hunt completing the act shows the same trust in me.

Although I sensory seek for things others would call pain, staples are not as gratifying in that way as some other things. I think the lovely padding just beneath my skin helps with that. In some ways I would like there to be more pressure. A sharper sting. But there are other things out there for that. Or places on my body. Kneecaps, elbows, feet…and I’ll have to stop there or I’ll distract the masochist who lurks deep within. And Mr Hunt will eventually read this…so….oops.

You can play with the sensation when staples are in place. Wobbling them while playing with threads (on a large embroidery needle with a blunt end) or ribbon (so much easier to lay out and staple over) will make you more aware of them…so if you’re after more of the good hurt, this can be fun.

Oh…and they have to come out. Personally, even with the proper remover, this is the bit that makes me flinch.

Mr Hunt wishes there was more mechanical noise with our staplers. A more mechanical feel, like the old desk staplers, even if that was purely manufactured in for the kinky user and not part of the receivers experience. I have, just once, shot myself in the hand with an upholstery style staple gun, the type used for display boards in schools. I think he want a user experience like that, but I, even enjoying a good sensory rush, don’t fancy repeating that experience. It was, I hasten to say, an accident not an experiment.

If you’ve never tried staples and think they are scary because a board stapler is what comes to mind, the experiences are off the scale different. Staples (and this is just the experience of this one particular woman, not general wisdom) are much less scary in practice than in the distant idea or even the immediate anticipation. Quick, potentially beautiful and easy to tidy away without much in the way of marks.

One last word of confidence. Even with my tendency for breaks in the skin to heal slowly (insect bites can take months to heal), staples have not caused an issue.

I like them so much I have written a trio of pieces this week on this theme, so there is also a Sinful Sunday picture and writing and a fictionalized account to peruse if you’d like.

Child Abuse- a parent’s perspective

Sex Bloggers for Mental Health badge, linking to the website.

Let me start again…

I know you can’t see all the previous versions of this post I’ve written, but starting again and again and again is all I have done for four years and this post was no different.

I’m not going to beat about the bush with trigger warnings because… take a look at the title and the link and think it through. What follows is a snapshot of what follows after child sex abuse from a parent’s perspective…But I will put a lovely picture here so you can escape without reading on if that it what you want to do.

Probably all you need to know is my children are loved and are loving.

I can’t say with honesty that I wanted to write this, because this isn’t a fictional account. There have been more than enough opportunities for openness to be cathartic for me not to be hoping for that.  But I do want you to read this, because before it happened to my family, I had no idea what happened when a child reported abuse.  I would have probably questioned how it could happen, that children could be assaulted in their own home and the parents not know. I think I assumed there were systems in place to support children and families in this situation.

Four years ago, in the spring of 2015, at least two of my three neuro-diverse children were sexually assaulted by a man with impeccable qualifications and references we had employed to allow them a more normal life. The third child was too young for us to ever know definitively.

My eldest child told me they’d done something good and positive with their carer. I knew it was sexual assault. I went straight to the police.

In the spring of 2016, the man was sentenced to 10 years for assaults to five children. I still don’t know exactly what charges pertained to my two children, but I do know the two rape charges initially framed by the CPS were dropped to one during the trial as part of the plea bargain. This lowered the sentence tariff. He will serve 6 years and 8 months before he is eligible for parole. Photographs of my children are in the darker parts of the internet and my children’s pictures are with CEOPs so they can be identified and removed if found. Somebody somewhere will have them on their hard drive.

I know my children were raped, whatever the precise legal definition is, because they have told me so.

My children were not hurt or frightened by the assaults but were told they were acts of friendship. Would make them bigger and stronger to defeat their school bullies. That they should show other children how to do this because this is knowledge that should be shared. I don’t know if their abuser thought this a kindness, perhaps it was something he himself had been told, but it was his biggest act of cruelty. We recognised immediately that the children might go on to repeat these acts, because as concrete learners these instructions from their abuser we now embedded. Interventions couldn’t begin fully until the trial was over in case it tainted their potential evidence.

As a family we took the decision they must be supervised to make sure they didn’t display their sexual knowledge to others. School couldn’t do this, so we started to home educate and had to buy in more support to make sure the children were properly supervised. We did this from our own pocket and it was crippling… but what do you do when it rains (and it was pouring) but spend your rainy day fund and hope that the rain stops.

During the heavy handed and non-autism friendly “recovery” support my eldest child developed PTSD from being told the things that happened to them were assaults. At our last scheduled session (because the children were “fixed”) my middle child, broadly non-verbal at the time of the assaults, suggested they had touched their younger sibling.

In the spring of 2017, we were put into Child Protection procedures because our children were a risk to each other. There was no further money, but our three children must have “constant supervision”. Because they had irregular sleep patterns because of ADHD and Autism, this meant one parent with their ear on them all night.

We had tried to keep everything light and normal at home. As light or as normal as it can be when your child has been assaulted by someone you told them to trust. Where you paid for the time they were being assaulted. Where you allowed into your own home and didn’t know they were assaulting your child 20 feet from where you were cooking the evening meal. When as part of the recovery we had to employ more carers, allow more professionals in and out of our lives, while remaining vigilant at all times. While friends and family pulled away because they could trust our children or our staff with their children. Or us. I mean, who employs a paedophile to work with their children?

Then social services came into our home and told us we couldn’t cuddle up on the sofa under a blanket to watch TV in case someone was touching someone else inappropriately. We had to cover our bodies from neck to knee during the night so the children were not exposed to naked bodies. The misplacing of an SD card with some risqué home photos of us as parents resulted in a multi agency enquiry. Threats were made at meetings that our children wouldn’t be found suitable local foster families but would be split up and put in group homes.

Suddenly we lived in the world where schools wouldn’t take the children because they posed a safeguarding risk, but elective home education (because we’d initially withdrawn the children from school) is not paid for. No-one funded the supervision at home so the financial stress went up and up.

The soap opera that was now our life went on to the scene where the police referred themselves to the IPCC because they had caught our employee with child porn on his computer three years before we employed him and failed to take action because he was a child himself. I’m not wanting them to have jailed him at this point, but where was their responsibility to him as a child being groomed into thinking looking at images like this were all right, by his new “friends” on the dark web. Where another parent who’d employed him before us failed to report him to the police, just sacked him and hoped it would go away. Where, went they did go to the police, the police did nothing. That the police didn’t act didn’t surprise me anymore. When he was on bail, we reported to the police we’d seen the abuser on social media out with children. They did nothing then either, and he continued to abuse two family members for the 7 months between us going to the police and charges being brought, because the police hadn’t checked if children frequented his family home.

At the enquiry, an officer was blamed for everything and everyone else had retired. We were advised to get a lawyer. We did. We now have a barrister who at our first meeting victim shamed the women in a previous case he’d worked on. We’d be ok, he said, because there was no question our children were innocent, whereas she’d had a drink, worn a short skirt and got in a taxi. We can’t sack him, because he represents the three families involved and he was the barrister in the case where the legal precedent was set in this field of law. He is our best chance of recouping some of the costs we’ve incurred, and getting damages and further support for the children. And I would love to ignore the costs, but we’ve spent well over £60,000 in carer support in four years and paid for private education on top of that.

Eventually after 11 months of Child Protection procedures, the children were identified by a psychologist to be less of risk to each other than had been assumed, but to still need psychological help and support and then we had to fight for this to be funded, because it is not NHS in our area of the country. Less of a risk, not no risk. Every decision we make at home with regards to supervision is still risk aware.

The children have gone back to school in the last few months. Schools who put their fingers in their ears and sing “La, la, la” when we want to talk PTSD triggers for both children. Because no-one likes to acknowledge these children know about sex and giving them a PHSE lesson on sexting is not something they need.

With the help of the psychologist we have started rebuilding our children’s understanding of sex, which means being a very sex positive household. Sex was never the problem here, breach of trust was. Abuse of power was. I want my children to know that sex is not shameful. Not a source of physical or emotional pain. Seeing naked bodies doesn’t make you a pervert.

God, that is fucking hard some days.

We have to focus on that. The intimacy of sexual contact is an important part of the glue that holds my husband and I together. It is an important part of who we are… this blog is a bit of a clue to that. But you can’t ignore the dual edge of sex in our home.

Four years ago, a man came into our home and raped our children when he was supposed to be helping them change their jumpers and attend drama club.

We caught him. Stopped him. My eldest child was particularly brave and gave super evidence to the police despite having communication issues. Other children are safe because my child spoke up. We remind them of that often. Several professionals have told us that the abuser was moving so quickly increasing the severity of his crimes that he would have continued to escalate.  He drove an anonymous van with a panelled rear. It is not a stretch to think where his behaviours may have gone.

I don’t know what our children’s prognosis is.

My eldest has learnt not to tell the truth to adults anymore. That to tell them what happened opened pandora’s box. They have told our psychologist that if it happened again, they wouldn’t tell, because the consequences were too difficult.

My middle child has learnt that when people look at them, those people find their body and face sexually appealing. They cannot take a compliment because it may have repercussions.

My youngest child has grown up in a house where every penny is spent on providing supervision, where there are more strangers in our lives than family members. Where you can’t cuddle your siblings.

I can tell you that they are doing as well as could be possibly hoped for after all this. They have positive and trusting relationships with us and with their carers. That it’s become clear they have non-typical ideas of gender and sexuality and that they are more prepared and have more tools to deal with these things as they are going through puberty now and in the next few years than most LBGTQ+ children. That they are emotionally literate. And yes, we still cuddle.

I can tell you that the process, some of it still ongoing, that follows reporting your children have been sexually assaulted is damaging to the children and the family who are victims and that as soon as a child acts on sexual knowledge obtained in the course of assault they become a “risk” not a “victim” and we became “negligent” and “neglectful” for not being able to supervise three disabled children around the clock and work to bring in enough money to keep the household running, without having other adult help. That social workers and schools are terrified of a sex positive approach, even when it is psychologist led.

I have learnt that some people will always look at me as the person who let their children be raped.

Mental Health

An otherwise healthy person can be stuck with stressful situations -mental or physical, that throw them off kilter and into a period of mental illness. Talking therapy, counselling, CBT, medication, homeopathy- there are lots of different approaches (that is definitely not an exhaustive list) and just like fixing a broken arm or burst appendix, a course of treatment or so and you can resume your life as you left it.

Or, you can have chronic issues with mental health for many different reasons.

If you think of a physical representation of autism as being born with your limbs and organs differently configured. Some things you can adapt your body to do, some things you either work around or accept you can’t do. Some things a “normal” person can do, like having a baby, can throw you into a period of health difficulties.

It’s not always a “health” but the symptoms of it can look that way to some people, even on my best days. Sometimes though, it is a health thing, when the chemistry of my head is creating paranoia, dissociation and confusion.  

Some days I walk through the world achieving my targets and feeling good about it. Some days, even after medication, I can’t leave my bedroom, can’t open my computer, can’t turn on my phone.

Both are pretty much equally opportunistic, and in the middle are a number of days that fluctuate between the two. Cold fear and panic can strike in the sunniest of circumstances and I can stand strong in a hurricane.

Standing strong, I have learnt, is not the answer. I can’t positive vibe my brain into behaving.  I have to accept this is part of me.  Bend to it.  

I love someone who started with a medical condition, Chrone’s Disease, years before I met them. But the ongoing results from first a surgery, then a septicaemia brought on by the management of the condition mean she has physical difficulties and pain every day. She has a heart condition, a stoma, and a hundred little other ways her body is fucking with her. Like me, she can have some really good days, the type where people hurl abuse at her for parking with a blue badge, and some days when she can’t do anything.

To a point we are co-dependant. She manages my brain and I help with the practical.

Both of us have had to learn to bend and accept the bodies and brain architecture and chemistry we have. Neither of us have met our working life potential, nor do we feel we are good wives and mothers.

We alter our goals and seek help to reach those where we can’t compromise.

It is hard and we are vulnerable. We don’t love ourselves and feel guilty for the extra effort put in by the people who love us.

I don’t look at her and find her less because of her medical condition so I have to trust she doesn’t look at me and find me less.

It is easier than accepting this from my husband, who is kind and loving and relentlessly healthy and body and spirit.

I have tried all sorts of remedies to improve my functionality. Medications, routines, mantras, meditations. I have tried to be “fixed” and at several points had indeed been told I have been. I have self medicated with cutting, alcohol, food (bingeing and denying) and self neglect. Nothing made a difference beyond the moment. Somethings have left me with lasting aversions, like difficulties eating in front of people.

She makes me eat. Pushes me to look smart. Notices if I wince when I walk (I cut my feet,-past tense for now). Drags me out with a phone call “because she needs me” when I am too agoraphobic to leave for myself or the kids.  Always asking for things I can do,- from drive me here to help me with this complex paperwork in your speciality, because she knows I have a kink for service.

He manages my failures in parenting without question. Coaxes me to work through whatever is blocking me. Celebrates my victories with me, recognising the mountains I climb that only I can see. He bought me tickets for my first Eroticon and pushes me to go each year. Reads my blog and pretends he doesn’t because he doesn’t want to pressure me. Has fixed my technology issues so I can write.

Pushes me to service, because serving him gives me a purpose and a sense of fulfilment, even if it is just to be a hole he can fill at his whim. Stinging the soles of my feet with sharp cane strokes, careful to leave no lasting damage, whilst still giving me that high. Marking my skin with bruises and drawings, because then I am his, not mine and I must be careful of what is his, where I would be careless with myself.

They bend too. This is no fantasy adventure where they demand and I follow without hesitation and without cost. Some days, being in bed is all I can do. I misjudge and give too much and one or the other suffers for my empty tank.

I don’t need fixing. Can’t be fixed, because being me is not being broken.

Being us is more complex than being others, but we love each other for who we are and love is not dependent on peer approval, on looking like everyone else’s relationships, to flourish.

We bend for each other.

And in bending we are strong.

April Orgasms

#30dayorgasmchallenge #30dayorgasmfun #mindfulmasturbation

When I was in my early twenties, I was having serious issues at work and they were affecting my mental health. This was twenty years ago and “mental health problems” were common parlance where I lived for being some kind of nutter. Either you’d had a breakdown and cried all the time or you heard voices or you were on your way to drinking yourself to death.

I didn’t do those things, although drinking myself into a stupor sounded good. I didn’t sleep, couldn’t focus, forgot conversations other people swore I’d participated in and was royally fucking up my first job.

My mum carted me to the doctor. I don’t remember much about the appointment but I strongly remember the doctor asking me if I was having enough sex.

I wasn’t having sex. Was that not enough? Good girls, without a committed relationship and preferably a wedding ring, didn’t have sex. Even then, what they did was “making love”. How was that related to everything else that was going wrong?

Looking back, the poor GP, who’d never met me before, was probably trying to ascertain if my libido had dropped. But I had not clue of that, and he had a particularly lumpy “down with the kids” way of asking.

No one was looking for autism as a possible root cause despite various attempts at coping with inexplicable anxiety for over half my life. If you managed school, that was that.

I didn’t masturbate. It was never talked about in any sort of sex or relationship education, even in terms of basic biology and in all honesty I didn’t know it was something girls could do. I had never explored myself in an area mysteriously only referred to as “between my legs”, like I was some sort of Sindy doll, with nothing of interest there.

Yes… this is my Sindy, and she didn’t get up to this when she was young!

I was so completely isolated by anxiety there was no way I was going to manage to find someone else to have sex with. There had been periods in my life when this was possible, but new to the town I now lived in, and new to a heavy workload, this was not it.

Jump forward twenty years… and I look forward to the #30dayorgasmchallenge coming around in April.

I still have issues with my mental health balance, but I now understand how they fit with autism and can be gentle and appropriate with my self care. And my self care includes masturbation. Wanking. Jilling off.

I think the doctor should prescribe it. Or at least, be willing to talk about it.

In my case, there is obvious dislocation between emotional and physical responses. I can have a physical panic attack without the mental feeling of panic at all. I can (sometimes very inconveniently) have all the sensations of a physical orgasm while doing something mundane and unstimulating. Similarly, and this way round I know it is much more common, there is no certainty that physical acts that are my normal go tos for pleasure will work and blinding anxiety where I can’t think in a straight line doesn’t always trigger a panic attack.

I use all sorts of sensory seeking behaviours to help link my body to my brain in a more connected way than it can manage on its own. Whether that is dealt out with a stingy little whippy stick or paddle, temperature play, restraint (where the sensory feature is the struggle) or something nice and gentle like a morning or bedtime wank, sensorially stimulating my body seems to fire up neuro connectors which are otherwise happily in standby mode.

The lovely Tabitha Rayne’s original idea for the #30dayorgasmchallenge came from a mental health perspective. I think it’s a fabulous idea and if you haven’t come across it, check out the link. Lots of lovely bloggers joining in and writing about their experiences.

In recent months I have been sent for some “me time” led by the local mental health team in my home town. They tried (for about the third time in my life) to start from scratch with the concept of mindfulness. I know it works, but when the only thing on offer is to contemplate a raisin, feel it in your mouth, taste it, concentrate on every aspect of its sensory impact, I am bored and my mind wanders, which is not the point. If I’m looking inwards to my own body, something is always irritating and distracting. If I have to concentrate on the feelings in my toes, I want it to be because they are curling in pleasure.

And of course, some days you don’t get to orgasm. That is just life. Try again later. Don’t feel guilty about squeezing in a bonus on the days they are easy. Call it fun.

Call it self care.

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Giving people the voice to say who they are

I am an Autism advocate and mentor. Sticking that flag in the sand feels positive. It has taken a long time to write that sentence today, the rest of the post stretching out below as I tried to explain this part of myself. Explaining how autism can interlock with identity and ideas of gender and sexuality is not something the paediatrician discusses with you  (autism primarily being diagnosed in childhood) and is missing from a lot of the early help books you find on raising young people with autism, but it is really important.

Given the rising prevalence of autism, or probably more accurately, the rising diagnosis levels, there might be a day this post is useful to you. I write mainly from personal experience, but backed by the rising amount of intellectual study in this area. And with the proviso that every person with autism is different.

Autism defines my perception of self.

On some small, closed topics, I can give a nice clear answer of who I am. Where evidence can be examined and weighed I have developed strong views on

  • Brexit (who doesn’t?)
  • the rights of people to express individuality
  • the effects of humans on environments

On other more conceptual things though I have no idea. Despite lots of reading and thinking, I have no internalised idea of gender. I can’t get my head round race. I sort of understand sexuality, but only in so far as some things create a physical reaction that I enjoy and I can understand how for some people that comes from a regular pattern of responses from a narrowed field. Mine don’t. In the last five years I have been so glad to find the idea of pansexuality, so finally I have a word I feel describes me. This is not unusual.

Like lots of people with autism, learning to mask and blend was considered important. That means learning to conform to the generalised concepts of social and herd identity.

Cis female, I was socialised to an idea of female behaviours, dress and presentation. With a family that was open-minded, employment and education choices were not limited and I am grateful for that, but I am pretty sure they had no idea which messages they were using as definition were limiting and made me change something I might have naturally done or chosen.

Negative and limiting statements are defining, especially if you have a weak sense of self. “Girls don’t do x.”, “only x people do that,” become rules.

I am still learning that being an adult means I can make choices that don’t match social and herd expectations.  I think I love the tribe I have met at Eroticon because they are almost universally accepting of that.

I have three autistic children, and am navigating through this soup of information with my husband, trying to use everything I’ve learnt to make parenting decisions. I try to carry this through into my advocacy and mentoring. Children with autism often learn most strongly from modelled behaviour, so being a walking talking example of someone happy in their gender and sexuality has been an area for which I’ve had to develop language and confidence.

Neither of my elder children have developed gender identities. As parents, we don’t make limiting statements where we can help it. We ask others (schools and individuals working with them) to aim to avoid them also. It is rarely well received. The herd still like binary gender identities.

They will tell you they are boys, but they use it as a recognition of their body, not a definition of social behaviours. They have a transsexual grandparent, so they know bodies can be changed. “If I don’t try being female, how will I know if I like being a boy more?” is perhaps not the musing of a typical ten year old.

They won’t wear pink. “Boys don’t wear pink,” is a northern European, twentieth century idea, but they have been socialised to it. The message is so strong they find it worrying that their heterosexual, comfortably masculine au pair chooses to wear baby pink. It suits him, and he’s from Spain where pink is not so heavily stereotyped. The children think it is weird because he doesn’t fit groups for whom pink is socially allowed (girls, gay men and old men who talk about antiques, I think?).

Having said that, they do wear shoes that would be marketed exclusively for women. They wear pyjama’s marketed for women because they like the soft feel of the fabric. Their beautiful blonde hair is below their shoulders, despite their schools’ objections.

Their sister, socialised exactly the same, is an explosion in the pink and fluffy factory, but she is as likely to be playing with lego or talking about dinosaurs as they are.

They love watching old episodes of Top of the Pops with me, and my little girl is completely unable to judge the gender of the singers because of the different fashions. If staples like having a deep voice being masculine and a high voice feminine don’t hold (think Alison Moyet and Jimmy Sommervile as very basic examples) she is lost. Make up and clothes are useless in this context. The boys just shrug and say, “Does it matter?”

When my boys are misgendered, or more accurately, when someone tries to label them as female, they’re not upset. “Actually, I’m not a girl,” is often followed by “It’s ok, I don’t socially conform.”

If I’d had that vocabulary, I might present very differently now than I do. Might label myself in a non-binary manner. Might be more comfortable in my skin.

I had years of coaching as to what female in all its forms should look like on me. Terms like “ladylike” and “feminine”. Learning the social power of make-up, the social necessity of removing my body hair. Eating and drinking have sexualised and gendered expectations. I lived through the confusing period of the “ladette”, where mixing all of this up just left me without a rule set to cling to and increased social anxiety. I am never going to totally loose that conditioning and rules give me structure and keep me feeling safe.

Writing the types of things I do and the circle of people I communicate with through Twitter and this blog being the tribe they are, I know I can write about gender like this and feel I am probably not shocking anyone. To write this same piece on my problems conceptualising race and I would come across as ignorant and tone-blind. A privilege of being born white. Heritage and familial history and experience, yes, I understand. The concept of being self-defined by race (rather than socially defined), I just can’t conceptualise.  

Autism is often misunderstood as a learning difficulty and adult autistics can be quite invisible, because either they live very supported lives, or they “pass” for typical. Or they are so socially anxious, they don’t go out. Support is often limited to childhood, and post puberty issues ignored. Grasping the idea that autism is life long and can affect things as intrinsic to your happiness and wellbeing as gender and sexuality, is, I think, the next level of autism awareness that needs to be supported. I believe this community is one that can help spread this message and apply this understanding to individuals as they need it.

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