Managing violence (2)

Making the world an easier place for our children

This series of linked posts are largely based on my experience with my son, who is verbal and has no intellectual disability. After I abandoned using rewards and sanctions I started to explore different ways of reducing anxiety, increasing emotional regulation and improving problem-solving skills as a way to address explosive and reactive violent behaviours. I started off with a general idea of what I was doing, sometimes drawing on my professional and academic experiences, but mostly going with what felt right. It was often later that I found books and advice from ‘experts’ which supported (and legitimised) my seemingly eclectic approach.

I looked to ways we could change the world around him and I looked for ways to help him develop the skills he would need to navigate the world. It was not about changing my son, it was more about making space in the world for him and equipping him for the journey.

These posts on ‘managing violence’ started as an outline for one post and now, as I write this piece, I realise it will be a three parter. The feedback I have received about part one demonstrates how important this topic is. This post will focus on getting the foundations right. We cannot begin to support our children to develop skills unless they are in a fit state to learn.

If we accept that anxiety is at the root of our children’s more extreme behaviours, we have to address that anxiety. I see little purpose in addressing behaviour without the right foundation. None of us learn well when stressed.

Changing the world

Changing the world for our autistic children happens at both a macro and a micro level. I think we all as humans have a responsibility to do what is within our abilities to try to make the world a better place for our children (for all children) to grow into. We might do this by raising awareness, educating people, upholding values of acceptance and justice, whilst encouraging and embracing diversity. Every little bit helps.

In our day to day lives we might have to make changes to our homes, our lifestyles and our plans to meet the needs of our children. We must find ways to make the world our children inhabit easier and less overwhelming. For my son this means predictability, structure, routines and meeting his sensory needs.

Controlling the world

Most standard parenting courses for parents of autistic children recommend routines and structure. These are supported by visual schedules, timetables and lots of planning and preparing. We get shown examples of complex schedules, beautiful symbols, pictures and artwork, laminated and velcroed. We are shown different ways to make them and where to buy the constituent parts or even ready made schedules.

I love making visuals with my son, we discuss them in context. We talk about what we want to achieve and why. We carefully select images, cut them to size, watch the laminator work its magic, apply velcro… and then they usually get abandoned. I’ve learned that, for us, the thinking and talking is the useful part of the process!

Without a doubt, having some routine has helped my son, but I’ve also learned that routines can restrict and limit. What is often missed is how to build flexibility and surprise into these rigid structures. Life cannot be entirely predictable, so finding ways to help our children cope with the unexpected is vital. I get very anxious when my own routines and plans are disrupted so I’m very conscious of the effect on my son.

In our family we have found that having set routines can be beneficial at specific points of the day. They are useful when we are working to someone else’s schedule, like getting ready for work and school in the mornings. We have also found that having a bedtime ritual, which has changed and adapted as my son has got older, makes for an easier and happier end to the day. These are not imposed, they are discussed, trialled and talked about. Flexibility is key. I will be discussing the importance of collaboration and negotiation in my next post.

This day to day scaffolding provides a safe structure for my son who seems more able to cope with surprise and disaster within it. Finding the right balance is important. I have found that as my son has got older and developed his own strategies (and simply matured and developed in a myriad of ways) he is able to abandon some of the routines and rituals. I can tell when his anxiety is rising because he relies on them more and is less flexible, more explosive and more aggressive. I need to be able to respond to these needs, providing routine when he needs it and gently encouraging diversion when possible.

As parents I think we have to pick our moments and create opportunities for our children to encounter inconsistency and spontaneity. Using special interests is often effective, but should be used carefully. Too much and we risk our children losing their interests, but a little diversion can present new areas to explore. We need to respect our child’s right to say or indicate ‘no’ they don’t want to do that. Very few things are compulsory so giving choice and an escape route is important.

I cannot stress enough how anxiety-ridden change and changes can be, and the more anxious we are the less flexible and more controlling we become. The security and predictability of routine can make it easier for us and our children to try new things and cope better with the unexpected.

If we can make the world more familiar, more predictable and more comfortable it becomes more accessible for our children and their anxiety reduces. When our children are less anxious they are more able to both cope with challenge and use the skills they’ve developed. If our children are prone to explosive and violent behaviours when their anxiety is high we have to work on reducing the anxiety first. There is absolutely no point working on learning and skills development when a child is in a state of distress.

Note for schools: our children work really hard to get through a school day. Don’t underestimate how much effort it takes just to be in school. Keeping to the timetable, preparing for changes to the timetable and allowing some choice can make a difference. Just because a child seems ‘fine’ with change, doesn’t mean they are. Many of our children are master maskers. Do listen to the parents if they spot a pattern which indicates home problems are rooted in school day problems. One of the most effective supports for my son was a copy of each week’s timetable. It helped me prepare him for each day and helped me spot problems by identifying patterns in his behaviour.

Sensing the world

Our senses are central to the way we experience the world around us. Autistic people often experience sensory input differently to neurotypical people, but all people respond to sensory input and use sensory strategies in their daily lives. All of us, autistic or not, see, hear, touch, smell and feel. The position of our bodies and how we move is the result of sensory processes. We both avoid sensory input and seek it. I am not here to explain the science of sensory processing, as that’s beyond my expertise, but I do want to explain a little about how it affects us and what might help on a practical level.

For many autistic children sensory problems cause immense anxiety and can be directly linked to violent and aggressive behaviours. Our senses keep us alert to danger, triggering our instincts when we feel under threat. If those sensory perceptions are a bit wonky it follows that our reactions might be unusual too.

My son experiences a seemingly conflicted mix of hyper- and hypo- sensitivities. A simple example is his touch response. He is hypo-sensitive to heavy touch, he loves to be squeezed and squashed and physically restricted. He will ask for more and more and ‘please more’, as if he wants to be compressed like a car in a crusher, his body simultaneously folding in submission and resisting pressure. This is deeply calming and pleasurable for him. Since he was a baby he has been pacified by firm patting and vigorous rubbing of his head and back. If you bump heads with him he won’t even notice.

However, his hyper- sensitivity to light touch, a fleeting brush of his skin or clothing as you walk past, a gentle stroke of his arm to soothe him, means he feels it like a full-on assault. And when we feel under attack, what do we do? We fight, we take flight or we freeze. We are barely in control of this instinctive stress response, even less so when we are already in a heightened state of anxiety. My son’s instinct is almost always the fight one. To an outsider it looks like a massive over-reaction, but in response to what he feels and perceives, it is quite proportionate.

This fight response to uncomfortable sensory input is called ‘sensory or tactile defensiveness’ and it is very real. It does not just apply to touch. Often, we can cope better with perceived sensory assault when we are calmer, or have some control. The noise of another person eating can make me mildly irritated on a good day or holding back an urge to rage in fury on a bad day. I have learned to flee rather than fight, but the instinct is there. I am fortunate that I can articulate this. Many of our children cannot.

Having to constantly process uncomfortable sensory input and meet our sensory needs is exhausting and can leave us with limited capacity for rational thought or learning. I could list all the various ways people manage their sensory problems, but there are whole books about this. I urge you, if you have an autistic child who is presenting with violent and explosive behaviour, to look at sensory processing difficulties. Small changes can make a huge difference.

Atypical sensory processing can cause significant problems, but it can also lead to creativity and new ways of experiencing the world. Autistic artists like Jon Adams create beauty from their synaesthesia, providing new ways of experiencing the world. Our autistic children often offer interesting and original insights into the world around us.

Note for schools: school classrooms and corridors are often a sensory nightmare. Poor acoustics, residual food and cleaning smells, fluorescent lighting, and visual clutter everywhere, all combine to add to our children’s stress load. The noise and chaos of a primary school playground or dining hall can be hellish. It makes our children feel under attack. If you can provide calm spaces for our children to retreat and recharge you might help reduce stress and overload, reducing violent and explosive behaviours.

Allowing an autistic child physical space and room to fidget and move can help them maintain their own balance. Try to understand that children fidgeting or becoming entranced by the view from the window sometimes learn better than when forced to sit still and face forward. Our brains can get so cluttered that to concentrate we sometimes need to hyperfocus on something unrelated. My son’s teachers have finally learned that when he’s looking out of the window, fiddling with his ruler, possibly even humming, that he hears every word you say. Make him look at you while you speak, and he will be so focused on sitting right, looking the right way, and staying still, that he won’t hear a word you say.

In my next post I will discuss some practical ways to support emotional regulation and develop problem solving skills in our children as a way to reduce violent behaviours and meltdowns.

Managing violence (1)

Explosions, meltdowns and school problems

This post started out as a simple piece on strategies to improve temper control and manage meltdowns, but as I started writing it became more than that so I have split it into three parts. This part will give some background to my experience with my son, explain a typology of violence and demonstrate how poor understanding in schools can exacerbate problems. The next two parts will explore in more detail the combination of strategies and techniques which have worked for us.

My son started ‘lashing out’ at nursery, but it became a real problem when he started school. Looking back I can appreciate how hard his nursery had worked to support his needs, calling in external advice and actually following the advice. Nursery staffing ratios and the physical space of the setting helped too. The nursery took up the ground floor of a big old solid Victorian house with vast gardens and quiet spaces. The free flow of this setting meant my son could make choices and choose activities. He had more autonomy over his choices at nursery than at any other stage of his education so far.

He started school a few months after his fourth birthday, not diagnosed or even referred for assessment, though he was recognised as having some special educational needs and had extra support for the transition. Despite raising the possibility that he was autistic several times, it was never taken seriously. School were dealing with an aggressive child, who struggled to interact with other children, but who was highly articulate and appeared ‘bright’ and capable, whilst refusing to accept that there might be a reason for the obvious disparities.

At the beginning, I worked alongside school, supporting their sanctions, because that’s what we are told ‘good parents’ do. I removed privileges at home after ‘bad days’ and rewarded my son for days without incidents. It didn’t make any difference as he didn’t respond to sanctions and rewards. He could verbalise that he knew it was wrong to hurt other children but he couldn’t stop himself.

At some stage during that reception year I came to my senses, realised that this wasn’t working, and if anything, was making things worse, so I stopped. I realised that anxiety was making him lash out, and that focusing all my energies on trying to address the violent behaviours wasn’t helping and was making home life pretty grim.

If I had continued to use sanctions, rewards, and other inflexible approaches, I know, without a doubt, that my son would not have done so well. To encourage flexibility of thought, we must model it. To encourage staying calm we must model it. To encourage kindness we must model it. Inflexible, draconian, harsh parenting doesn’t provide the modelling our children need.

Over the years which followed, he got his autism diagnosis (and a few more) but school continued to be a challenge. With hindsight I wish I had changed schools. It is only now that he is in a supportive, responsive and pro-active secondary school that I realise how much easier it is when school both respect a parent’s knowledge and want to work in partnership.

Parenting a violent child is hard, we do it in secret, too embarrassed and ashamed to talk about it. The internet is often our only way to find other parents (usually mothers) coping with similar issues. Nobody says it out loud. We need to. Too many autistic and otherwise disabled children are being failed because these behaviours are seen as indications of poor parenting, lack of boundaries and ineffective discipline.

Two types of violence

Too often children who lash out in distress are labelled as ‘bullies’, particularly by the parents of their classmates and peers. My son has never been a bully. The confusion arises because people misinterpret the behaviour. There are two broadly recognised types of violence:

Instrumental violence and aggression is where the aggressor uses violence (or threat of violence) as a means to an end. It requires an intent to harm, or provoke fear of harm, and is controlled and calculated. The aggressor will usually take steps to hide their behaviour. This is typically the sort of aggression used by bullies, who check who’s looking before they act, and who lie and manipulate to avoid detection. Because the aggressor seeks to evade detection for fear of consequences they are more likely to cease when risking a feared sanction.

Expressive violence and aggression is altogether different. There is no planning, no intent to harm or gain, and minimal control. It stems from our instinctive fight, flight or freeze stress response. This sort of often explosive violence is rarely hidden, though as children get older that may hold it in and explode later, which is why so many autistic children appear ‘fine’ at school and become violent, destructive and suicidal at home. It’s not that school is great and the parents are hopeless, quite often it’s the very opposite, that school are failing to recognise a child’s rising distress while the child uses all their strength to hold it in and ‘be good’.

This expressive violence is the type we see most in autistic children, who are frequently not socially sophisticated enough to plan and carry out instrumental violence, and whose violent behaviours are, almost always, an extreme stress response.

School problems

Parenting a child who is violent and aggressive at school places us in a difficult position. On the one hand it’s your child so you feel you have some responsibility. None of us want our children to be violent at school. On the other hand, school are in loco parentis and have a duty to meet needs and provide appropriate support. Unfortunately, school behaviour policies are often built on tackling instrumental violence, relying on escalating levels of sanctions as both deterrent and punishment.

If you use those strategies for children whose violence is impulsive, expressive and stress-based, you risk making them more stressed and more prone to explosive and reactive aggression, lashing out and meltdowns. This can create a vicious cycle of stress, explosion, sanction, more stress, more explosions and so on. For far too many children this results in eventual exclusion from school. I don’t know how my son avoided exclusion, I know of many children excluded for less serious and less frequent violence.

With my son, there were broadly two types of children who got hurt by him lashing out at school. Some more socially sophisticated children appeared to take great pleasure in provoking and goading him, stepping back when he lost control, amused by his reactions and distress. They had the skills and awareness to not be seen or caught, whilst my son couldn’t find the words to explain what had happened (you can probably guess who got in trouble).

Hours or even days later I would find out what had led to the incident. Teachers always wanted to know straight away so they could take action. But with an autistic child you might need to wait until they are in the right frame of mind to explain. It can take very careful questioning to get to the real cause. I would do this at home, slowly working backwards from the incident to find the precursors.

The other type of children who often got hurt were the opposite, the caring boys and girls who would recognise my son was upset and approach him out of kindness. Unfortunately, their kindly questioning, checking my son’s well-being, and well meant touch (neurotypical children can be very tactile!) would be perceived by my son as a further attack and his fight instinct would erupt. These children probably suffered most. They were trying to be nice and were rewarded with a push or a kick.

Throughout those primary school years, I was working hard at finding and using strategies and techniques which worked. School were inconsistent in their approach and poor at spotting his rising anxiety, despite having considerable 1-1 support. Things that were working would be suddenly withdrawn, school failed to carry out advice from external professionals and ignored most of my suggestions.

As my son became more effective at masking in school much of the violence was delayed until he reached home at the end of the day. Each day at home time I would swiftly get him to the car hoping he wouldn’t explode before we got home. School never saw this. They thought he was fine. He wasn’t fine at all, he was in a state of heightened anxiety most of the time, but he wanted to go to school and he wanted to learn.

Throughout those primary school years I found ways to ameliorate the worst and help develop the skills he needed. My son has made remarkable progress. At his last annual review, with a new SENCO, her first words to me were “Wow! Hasn’t he come far. I’ve just been reading his file and I cannot believe it’s the same child”

The next two parts will show how we got here.

Autism and acceptance

These two words are often linked in ways that confer a variety of meanings, good and perhaps not so good. We are currently in Autism Awareness Month, also being promoted as Autism Acceptance Month. In this context acceptance is a positive goal. We need people to accept that autism is here and it’s not going away. We need people to accept autism as a variant of human life and not an aberration to be cured. We need people to accept that us autistic people are part of life and that every one of us has strengths and is of value. But, in the same way that awareness isn’t really enough, I’m not so sure acceptance is either. Like awareness, acceptance feels quite passive. “I’m aware” and “I accept” are lovely in principle, suggestive of kindness and understanding, but that’s it. We need more. There’s still a way to go.

This post developed from my growing irritation after reading a variety of forum and blog posts over the years by parents of autistic children. I’ve read parents describing how they struggle to accept their child’s autism or whether to even accept a diagnosis of autism.

“Should I accept an autism diagnosis for my child?”

This fear of diagnosis often comes from a fear of being ‘labelled’, the concept that labelling something results in a self-fulfilling prophecy, and by labelling a child autistic they will become autistic or more autistic. It is certainly not uncommon for those of us diagnosed later to appear to be more autistic following our diagnoses. However, this late regression tends to be a response to giving ourselves permission to be ourselves, releasing what we would normally suppress. It’s not that we become more autistic, more that we stop hiding our autism.

To me ‘accepting a diagnosis’ is an inexplicable quandary. I have yet to hear any parent discussing whether to accept a diagnosis of asthma, epilepsy or diabetes for their child. I can’t imagine a parent deliberating over accepting their child being diagnosed with Down’s Syndrome or Cerebral Palsy.

When parents question the validity of a diagnosis for a child who appears to meet the diagnostic criteria it makes me wonder. I wonder if perhaps their child’s additional needs are so insignificant that they don’t need a diagnosis anyway, but surely if that were true they wouldn’t meet the criteria. I wonder if perhaps they are worried about stigmatising and bullying, but autistic children (and adults) get stigmatised and bullied primarily for being different, not for being autistic (because we don’t actually wear labels in real life so most people don’t know we are autistic). I wonder mostly if perhaps people think diagnosis is optional because they don’t think autism is real.

I was joyous when my son got his diagnosis, and mine too. My response on both occasions was a sense of vindication, that I was right all along. Neither outcome was a surprise, and if a diagnosis hadn’t been forthcoming I would have sought second opinions. The identification and formal recognition of autism is immensely valuable both for self-identity and legal protection. Those of us being diagnosed later in life have a unique insight into life both undiagnosed and diagnosed. I think most of us prefer to be on this side.

“I can’t accept my child’s autism”

I’ve read and heard that some parents don’t feel they can accept their child’s autism once diagnosed. What does this even mean? I can’t understand how you fail to accept something that just is. It worries me when a parent fails to accept their child’s autism, because it can result in immense pressure on a child to perform normal. If you’ve read any of my previous posts you’ll have seen me discuss ‘performing normal’. There may be times when we feel we have to do it, but by and large it’s both exhausting and a great drain on our often limited resources. If we do it for too long or too often, or because we are forced to, we risk shutdown, meltdown and withdrawal. For too many autistic people, it results in deteriorating mental health.

I have come across points of view which equate accepting a child’s autism with not doing anything to promote development. This is quite preposterous. The parents I know who accept and enjoy their autistic children for who they are don’t sit back doing nothing. Like any parent of any child, autistic or not, disabled or not, we work bloody hard to encourage progress. But, what we don’t do is have ‘normal’ as our end goal. I think that’s the difference. For most of us ‘happy’ is our end goal.

Some autistic children might seek happiness among their typical peers, for them we shouldn’t strive to make them indistinguishable from their peers, we should find ways for them to engage with their peers as themselves, by building confidence and supporting interests, teaching them the skills to navigate their chosen social realm. Some autistic children are happiest pursuing solitary activities and special interests. We should support them too, giving the space and time to do what they enjoy, for they could be laying the foundation for their own futures. We need to work hard to find ways to ensure that the skills our children will need in later life aren’t neglected, but there’s no great rush. We have to stop working to chronological norms and accept that uneven, disordered development, the ‘spiky profile’, of autism is par for the course.

Accepting autism doesn’t mean doing nothing, it doesn’t mean treating an autistic child as some sort of anthropological curiosity who must be preserved in their natural state of autistic. Accepting means respecting and cherishing and nourishing. It means supporting and loving and enjoying. It means working to each other’s strengths to overcome and ameliorate the most challenging aspects of life. A bit like parenting any child really.

Reimagining my past

Looking back through autism-tinted spectacles

It’s inevitable that going through the process of self-awareness and the discovery of our own autism means we have to return to our past. This revisiting can be both illuminating and unsettling. As we pick apart our own lives in the context of autism we learn more about ourselves and our past behaviours, choices and errors. In this post I want to talk through some of my remembering and explain how by applying an autism filter things start to make more sense. This post covers the period from my early childhood to my late teens, largely focused on my school years. It has been hard to write as those were not the best years of my life, but the process of thinking and writing helps me understand and contextualise my own experiences.

Early years

I have few memories from before starting school. I do remember that I attended several nurseries and never settled. I have memories of feeling confused and crying a lot. I know I was an early talker and a late walker. I have been told I was stridently independent from little, making sandwiches and learning to sew (with a proper needle) at around 2 years old. I can remember my Noddy wallpaper being painted over and being upset that I could still see the bells on all the Noddy hats when nobody else could see them. I have been told that I knew all the words to Genesis’s ‘Foxtrot’ album when I was 4 years old. I could read, dress and tie shoelaces when I started school. I could only sleep in complete darkness and silence (a problem which continues to this day). I collected Matchbox cars.

Looking back there were early signs of social difficulties, not fitting in, struggling to engage with my peers. My early language and ability to watch, learn and copy laid the foundations for later masking. I had good fine motor skills but struggled with bike riding, climbing and using playground equipment. My balance has always been poor and I have always been clumsy. There may have been some echolalia, and there were definitely sensory processing difficulties.

Primary school years

I started primary school late. I don’t know why I was held back, I suspect I wasn’t emotionally or socially ready. I was certainly academically ready. I attended 3 primary schools. The first closed and was merged with another, creating a huge primary school. I struggled there and was moved to a smaller school with vast grounds and a kindly head teacher. My school reports from that time describe me as a ‘pleasant child’ but that I was reserved and needed to speak up more. I struggled with PE.

At primary school I did not fit in, was routinely bullied and was never part of a friendship group. I never had a best friend and I can’t recall the name of a single friend from that time. I was a ‘tomboy’ but too quiet and dull to play with the boys, too shy and odd to play with the girls. At home when I wasn’t reading (I re-read the same familiar books again and again), I sewed clothes, accessories and set up room scenes for my collection of Sindy and Pippa dolls. My obsession with sewing led to me cutting up my own clothes! I often played with a younger neighbour and could be quite bossy. I can remember having time off school with pains and stomach aches. I wouldn’t use the toilet at school because of the smell. Parties and ‘play dates’ were dreadful, I wanted to go and I wanted to have them but I would become silently overwhelmed with not knowing what to do. I continued to cry a lot but not be able to explain why.

When I had my assessment I was asked about school and playtimes. I was, and still am, unable to remember specifics. My memory is of how I felt, a sense of confusion and fear. I didn’t know what to do. I would be told ‘go and play’, but had no idea how to put that into practice. Other children didn’t want to play with me. I continued to watch and try to copy, but it’s hard to pull off when you don’t understand. When you try to imitate without any real understanding the other children see it, they can tell, it just makes you come across as more weird, more different, more ‘other’.

Secondary school and beyond

It’s often at secondary school where able verbal autistic girls start to fall apart. The increased social demands and the apparent complexity of teen friendships presents a myriad of opportunities to falter and fail. I did not enjoy secondary at all. I attended 3 secondary schools, with 2 years at the first, less than a term at the second, and a move to the other side of the country resulted in a third school where I stayed until partway through sixth form. The first 2 years were reasonable and I managed to find a friend for a short while which helped. I was quiet and compliant, well-behaved in class, but struggled to organise homework. I continued to experience low-level bullying and have time off for stomach aches and pains.

The school I spent most time at was the least successful. It was a large comprehensive and I was an outsider with a strange accent who had no use for the social language and conventions I had worked so hard to learn in my previous schools. As well as being new and shy I had a whole new version of teen-speak and teen-culture to learn and new tribes to navigate. I was introduced to another new girl and we remained friends for a couple of years. We had little in common apart from being ‘new’ and ‘outsiders’, and some shared music interests, but it was good to have a friend who I could see in and out of school. I never felt part of things but desperately wanted to be included.

Bullying continued, I had no idea why. I never provoked or goaded and just wanted to be left alone. I suspect it was because I was an easy target. I was different, weird and unable to benefit from the safety in numbers which protected other girls. I didn’t have the skills to deal with it and just took it. I can’t recall any serious violence, more a drip drip drip of pushing, verbal comments and being talked about. I can’t remember ever explicitly telling anyone what was going on. This seems to be fairly typical for autistic girls, an inability to find the right time or the right words to tell someone. I see it in my son now, unless he is asked explicit questions he can’t verbalise what’s bothering him. Having good spoken language is not a good measure of how well someone can communicate. I still find communicating my emotional needs almost impossible.

Music became my interest, my escape and a way to connect with other misfits. Like my son and his aversion to anything popular, I rejected pop music and obsessed over the indie charts, listened to John Peel and started to develop my own indie-punk persona. My lifelong special interest in crafts meant I could make and adapt clothes, whilst I experimented with hair styles and dyes. I started to get into trouble for my appearance. I became politicised and (irritatingly) vocal about my beliefs. By my last year at school I was doing very little work but was being noticed and I started to make friends with other less conventional peers. I failed most of my O Levels, somehow scraping through to enter the sixth form, but my poor attendance and lack of work meant I risked expulsion, so I left before I was asked to leave.

For several years after leaving school I maintained my ‘wild’ persona. Alcohol (and drugs at times) gave me confidence and scaffolded my social life. There was an illusion of normality among my chaos. The ‘teen rebel’ is an accepted social role in our culture. I could make arrangements, meet up, drink and join in. I could be part of a crowd. Then I would go home and crash. From my early teens I had spent a lot of time alone, either in my bedroom or out walking in the wilds of the moors. I was secretly self-harming by superficial cutting, hair-pulling and skin-picking (I still do this). I had many thoughts of suicide and wavered between feeling fearless and suffering huge anxiety. I verbalised none of this. Just after my seventeenth birthday I was away and was told not to return home. For the next few years I moved many times, became transient, impulsive and reckless. I maintained employment throughout, but my time off was spent either socialising to excess or hiding away and sleeping. I was capable and competent at work, but a chaotic mess the rest of the time. I was hopeless at managing money and looking after myself. At 21 I was burnt out and returned to my ‘home’ area where I had a year of doing very little before venturing into a more settled period of adulthood.

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World Autism Awareness Day

Yesterday was World Autism Awareness Day. Usually I would find some way to mark the day, perhaps by engaging in online awareness raising or encouraging work or school to raise awareness. This year felt different. Perhaps because since my own diagnosis it feels more personal. They’re talking about me and people like me and it feels oddly intrusive. I want people to be more aware and more accepting of diversity in all its forms, but being the subject of an awareness raising campaign makes me feel even more separate. I understand that we need the general public to know more and know better about autism, but they also need to know more and know better about a multitude of other disabilities, differences and inequalities. We need people to be respectful and understanding of all the wonderful and more challenging aspects of human life.

One day or one week is not enough. Schools, workplaces, medical and care providers, businesses, family, friends, strangers – all people and all services need to recognise and support the diverse nature of human life every day. There are people facing real struggles every day of every week, to access education, health and care provision. If you’ve got family members, friends, pupils, employees, customers or service-users the chances are some of them are struggling, some might be autistic, most won’t be. But if they’re struggling please do more than press ‘share’ and ‘like’ buttons on social media. Please do something real and meaningful. And if they are autistic and you don’t know what you can do to help, just ask, we like direct!

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