Play and the autistic child

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[image: ‘Play and the autistic child’ in white text against a background of small logs, pine cones and a croquet set, arranged by a small child on faded wood decking]
I’ve often come across posts and discussions on social media by parents of autistic children worried about their child’s apparent inability to play. They describe their child having no interest in toys, preferring to ‘stim’ with random objects, ‘disappear into their own world’ or run around, bounce or spin. Such parents are usually looking for ways to help their child play with toys ‘properly’. They want to teach their children how to play like other children. ‘Proper’ play is heralded as a gateway to developing social and communication skills.

Strangely (to me), the concern is rarely that the child is unhappy, in fact the child is almost always happy while engaging in their chosen activities. As a parent of an autistic child who has had long periods not very happy at all, I cherish the happy moments. I can’t imagine anything being more important than happiness. We learn best when we are happy and we stay healthier, emotionally and physically, when we are happy. Life is better when we are happy and allowed to do the things which bring us pleasure.

We all enter parenthood with an idea of the sort of childhood we want to create for our children. This often includes a desire to reproduce the good bits of our own childhoods and improve on the bad bits. We remember the toys we played with the games we played. We remember what made us happy and also what we thought, at the time, would make us more happy.

Play is important. For me, play is pretty much anything we do as people to bring pleasure. It’s the things we do for ourselves, not because we have to or are being rewarded for our participation. Play might be with toys or not, it might be visible or it might be entirely in our imaginations, it might be solitary or it might be with or alongside other people.

Play is many things to many people, but we can help our children best if we consider what play means to us and, perhaps more importantly, what play means for our children.

Whenever I hear a parent ask “How do I help my autistic child play properly?” I wonder what they mean. Do they mean play according to the instructions? This makes sense if it’s a group playing a board game, but less sense if it’s playing with dolls, or a train set, or a play castle or Lego. Children do, of course, learn through play but, surely, it’s the sense of discovery and using toys creatively, going off-piste, which creates most fun and most learning opportunities?

Do they mean play in the same way as their typically developing peers? An autistic child is quite likely to have different cognitive, sensory and perceptual needs, motivations and interests than a typically developing child. Teaching a child a set routine to play with a particular toy or playset seems more akin to choreography than play.

Parents need to think about why they consider the neurotypical way the best way. Just because ‘everyone else’ plays like this doesn’t mean it’s wrong to do it differently. Our children need to be encouraged and supported to be comfortable and confident in their choices, not trained to fit in and act normal.

Do they mean playing alone or playing socially? Autistic children often seem to be held to higher standards than their neurotypical peers. If they play alone too much they are discouraged for fear of missing out on social interaction and communication opportunities. If they can’t play alone they are seen as unsettled, demanding and needy.

All children have preferences. When a typical teen hides away in their room, parents might sigh and despair, but it’s accepted as ‘normal’. When an autistic teen hides away in their room it’s seen as worryisome and something which must be addressed so they don’t ‘withdraw further’. When a typical toddler plays quietly in their room looking at books the parents pat themselves on the back at having produced such a self-directed, independent, easy, clever child. When an autistic toddler plays quietly in their room looking at books the parents worry about obsessive behaviours and withdrawal.

Typical children are praised and rewarded for their friendliness, their ability to take the lead in group work and their expression of emotions. Autistic children are watched with eagle eyes to check they aren’t being too friendly, too bossy or too exuberant. Autistic children are often held up against idealised and unattainable expectations of ‘normal’ and ‘proper’, expectations which many typical kids would fail to meet.

Play is a fundamental part of our development but it should not be a tick box exercise. Play is part of our human instinct to imagine, wonder, discover, manipulate and feel our way through the world. Typical children seem allowed to just play, whilst autistic children’s play must be directed and purposeful. Does everything needs to be a measurable learning opportunity?

When a child builds their own model with Lego instead of following the instructions we should be proud of their creativity. When an autistic toddler re-enacts their favourite TV programme with their TV character toys and uses echolalia to voice their characters, they are playing. They are engaging with a world they’ve chosen, that they like and enjoy. They are remembering, imagining, moving and talking. These are pretty useful skills.

When I hear parents talking about how their child needs to learn to play ‘properly’ to develop their language, social and communication skills I wonder about the opportunities the parent is missing. Instead of steering the autistic child in a direction which aligns with their typical peers, wouldn’t it be better to steer our expectations and encourage development in the direction our kids have chosen? It is much easier to swim with the tide.

Some parents go to great lengths to teach their autistic children to play in a preferred way. Is it worth the effort? It might help their children ‘fit in’ more easily with their peers at nursery or school, make them less noticeably different. I am not sure this is a good enough reason. ‘Fitting in’ and ‘performing normal’ take their toll on us autistic people, and being different should not be seen as a bad thing.

I do understand why parents can feel a need to support and encourage their autistic child’s progress along typical lines (I have a post coming soon which explores this) but I also wonder if these often huge efforts could be better utilised. Instead of vast swathes of time teaching a child how to play, how about leaving them to play in their own way. Use the energy and motivation and whatever compliance you can garner to focus on skills which will be of use for a lifetime.

Don’t sweat over puzzles, stacking, sorting and matching. Don’t worry if your child spins the wheels on their Hot Wheels cars or sorts them by colour instead of using the perfectly constructed (by you) track. Ditto for the castle, doll’s house and pirate ship you lovingly put together. Instead, think about targeting your child’s capacity for more directed learning into lifeskills. Swimming, road safety, pet care, learning a musical instrument, managing money, cooking and gardening, these are worth far more over the course of a lifetime than how to play properly with a play set.

I worried a lot about my son’s ability to play when he was in the early years of primary school. I pushed for school to put more support in place for him to access playground games and support his social development, and I worried endlessly about his preference to be apart from the other children. I came to realise though that we were wasting effort and increasing his anxiety by encouraging him to take part in something he had no real interest in. He preferred to stay in class and read or draw, or visit the nature area for some peace and quiet.

Getting the right balance between demands and downtime (playtime) is a fundamental part of our family life. It means trying not to waste precious demand capacity on transient skills. It makes more sense to use his (very limited) capacity for demands on skills which will serve him in the future. I haven’t always got this right but I try to keep an eye on the future when deciding what’s important.

At some point I came to the conclusion that in adulthood he would have little use for the skills he needed to survive the anarchic cacophony of the school playground. As an adult he would be able to choose how to spend his breaks and leisure time. The skills he was likely to need in adulthood would probably not be those he could learn in the playground.

It helps that I can look back on my own childhood and track which skills have been most useful. I hated the playground, it was where I felt most alien, not understanding the rules which everyone else just knew. I tried to create characters and roles for my dolls because that’s what other girls did, but it didn’t come naturally and if left alone, I would use my dolls as models for my emerging dress-making skills. I am ever-grateful that I was taught to sew at a very young age as needlecrafts have become my go-to winding down activity. 

Since my own diagnosis I have rediscovered stimming. I have realised how crochet and knitting serve as stimming activities, settling me when I try to think. I now have my own fidget toys to play with when I need to. A good fiddle toy makes me happy. Sometimes I use them to help me concentrate and reduce my anxiety, perhaps in a meeting or when making a tricky phone call. Other times I use them just for the sheer enjoyment. There doesn’t have to be a reason.

Neurotypical parents worry far too much about stimming. I realise that some stim behaviours are harmful and need careful addressing, ideally by diversion and not aversion. I also realise that some parents worry their child stims too much, though what’s too much for one family might be normal for another.

It’s often when stimming that my overloaded brain sorts itself out, filtering and processing all the recently input information. Everything becomes clearer and I feel more focused. We are so often overwhelmed by the social and sensory world surrounding us that we need time out. Children need that time out too, time to just be, no demands, no expectations, just to play, however they choose.

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Play doesn’t have to be with toys

Play doesn’t have to be with people

Play doesn’t have to make sense

Play doesn’t have to have a purpose

Play doesn’t have to be a learning experience

Play isn’t just for children🙂

Pesky senses

[image shows a background of random light trails, with a column of pink text saying ‘smell, taste, hear, see, touch, move, feel’]

Managing sensory problems in everyday life

All of us humans rely on our senses every moment of every day. Our senses protect us and enable us to move around and engage with the world. Our senses bring us great pleasure and tremendous pain.

When our sensory systems work well they make our lives so much easier and much more interesting. Our eyes adapt to varying light, bringing pleasure through art and signalling hazards on our paths. Our noses welcome pleasant scents and warn us of rancid food. Our ears bring us the joy of music and alert us to oncoming traffic. Our sense of taste makes eating a pleasure and helps us avoid poisons.

We use touch to hold, manoeuvre and feel, as well as to be held and comforted, whilst an automatic response triggers us to remove our hand from a hot iron. Our temperature and pain sensors are closely linked to touch and help keep us healthy and safe.

As well as the usual five senses there are a number of other sensory processes which help us live our lives. Perhaps the most relevant here are our vestibular and proprioceptive senses. Our vestibular sense helps us balance and move, whilst our proprioceptive sense enables our brain to know what all the parts of our bodies are doing and where they are without having to look.

Our senses rarely work in isolation. Eating often starts with visual and scent cues triggering physiological responses like mouth watering, followed by taste and smell experiences as we eat. Walking along a pavement requires us to look and listen, touch and feel, as our bodies stay upright and move in a coordinated manner. Writing at a desk in school or typing at a desk at work means we need to maintain a seating position and carry out fine and gross motor activities whilst being alert to the environment around us.

If our sensory processes are seamlessly integrated as they should be, it’s easy to not even notice them. Most people can block out the background noise of a crowd to hear their friend talking as they stand side by side. Most people can cope with varying light levels. Most people can ignore horrible smells or make themselves eat something they don’t like. Most people can coordinate their movement and avoid obstacles. Most people manage their sensory experiences without even thinking.

Lucky them.

For many autistic people, sensory problems are one of the most disabling and hard to manage aspects of autism. Hypersensitivities can make us feel under constant attack, living in a heightened state of stress, triggering our fight, flight or freeze response. Hyposensitivities can make us crave sensory input, holding back urges to move, touch and fidget, feeling lost without sensory stimulation.

When our sensory systems are poorly integrated and disregulated we can feel uncomfortable and disorientated. It is much more complex that just being hypersensitive, which is what most people think of when sensory processing problems are mentioned. The combination of hyper-sensitivities and hypo-sensitivities across the senses makes it tricky to balance our individual sensory needs.

It was only as I started to learn more about my son’s sensory difficulties that I started to apply that knowledge to me. Recognising that this is a real thing, and not just awkward fussiness, means I feel more able to speak up if I am struggling. It also gives me the confidence to use strategies to help me manage my own sensory needs.

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My sensory life

Hearing – Many autistic people are sensitive to noise. We often hear things other people can’t hear, get annoyed and irritated by sounds other people are able to ignore, and we might find it harder to filter background noise.

For his first 7 or so years my son slept with a fan running every night, both to block out and dull background noise and to soothe him. It was only when we moved to house with traffic noise that he stopped needing this. I found that my sleep improved too. The steady hum of traffic is a welcome sound for us both.

Some people wear ear defenders and noise reducing headphones to help with hypersensitive hearing. My son didn’t take to them at all, but I’ve found them useful at work when the background noise increases or if I’m feeling particularly sensitive or irritable. I do struggle with an overwhelming urge to remove them though due to touch sensitivity. This is just one example of how my sensory needs have to be balanced as managing one sense can exacerbate another.

Hearing people eat is probably my most hated noise, and I have to leave the room if someone opens a packet of crisps, bites into an apple or sucks a sweet. The noise becomes all consuming and prompts a seething rage inside me.

I can also, when engrossed in one of my hobbies or interests, completely fail to hear what’s going on around me. At that point my senses are simultaneously hyperfocused and oblivious (this dichotomy is a common theme).

Smell – I gave up smoking a couple of years ago. I have always had a good sense of smell, even as a smoker, but it is so much more sensitive now. It makes the world really quite unpleasant when you can smell what others cannot. Everything is intensified and it all feels over-powering. I often intermittently hold my breath as I walk around to avoid wafting perfume and food smells.

At home we can manage this as my son and I have similar sensory profiles. My partner seems sensorily inert compared to us two, which helps – managing three lots of sensory needs would be an even greater challenge (I am in awe of larger families who manage this). We often eat separately. I cannot be in the room when my son eats marmite rice cakes (noise and smell) and he cannot cope with most cooked food smells.

For me, smells are the hardest sensory imposition to ignore, they get inside my head and stubbornly remain, often long after the actual smell has receded.

Taste – My son is almost certainly a ‘hyper-taster’ and he can detect the faintest of tastes. In contrast, he loves the strong flavours of marmite, salt and vinegar crisps and smokey bacon. Taste is closely linked to smell and, alongside textural sensory aversions, is at the root of his very restricted eating. These days I laugh off suggestions of hiding vegetables in his food, knowing that he would spot a hidden ingredient immediately and amused at the image of trying to hide vegetables in a marmite sandwich.

All people have food likes and dislikes. I suspect that most people can tolerate a disliked food for the sake of manners or kindness. For someone with a significant sensory aversion this can be impossible. If we overcome our initial refusal, and eat something we don’t like, we will probably retch and we might vomit. It isn’t being fussy, being asked to eat food we don’t like is on the same scale as being asked to eat a big fat juicy live slug.

My view is that as long as taste sensitivity doesn’t result in a harmful diet, it is not a big deal. Many people have dietary restrictions and special requirements and it usually isn’t too hard to be accommodated or, as a last resort, to take our own food.

Vision – Bright light is my nemesis. In fact, most light is problematic and causes me pain and stress. I know my visual perception is squiffy because other people cope fine. I mostly manage by squinting a lot, which is less than ideal.

At work I’ve recently moved from a large multi-aspect office to a small office where I can close the blinds. The difference is remarkable, resulting in no eye strain and no headaches, even after sometimes close to 10 hours in front of a screen.

Sunglasses, wide-brimmed hats and long fringes can help shade and filter, but they all exacerbate my tactile defensiveness so for now I will carry on squinting and avoiding. Light is easier to avoid than smells, sounds and tastes because I can close my eyes.

Touch – urgh! – Touch is essentially two senses as we both touch things and are touched by things. Like all sensory input, touch can have a big effect on mood. Stroking and manipulating items of different shapes, materials and textures can help both relax and awake us. Stroking the cat or using a wooden hand massager tends to calm me whereas fiddling with a tangle fidget toy or playing with a paperclip or blob of Blu-tack tends to increase my ability to concentrate and focus. Some textures can create a quite visceral reaction. I cannot touch (or even look at) lenticular images whereas my son loves them.

Being touched can cause a variety of responses. Brush past me and my whole body will feel repulsed and angry, but firm hugging (when anticipated) is wonderfully soothing and grounding. All labels must be removed from clothing, and clothes with itchy seams are quickly discarded.

Touch relates to pain and temperature too. It’s not uncommon for autistic people to have unusual pain and temperature responses. My son wears the same level of clothing all year round and only notices extremes of heat and cold. Even then he might need a prompt that he’s getting hot or cold! Similarly with pain. He often only feels it if he can see it. A minuscule injury will be felt as severe pain, whilst a punch to the arm will have little effect.

My pain and temperature responses aren’t as extreme as my son’s but I have noticed that they are different to most neurotypical people I encounter. I am always at odds with colleagues on temperature in the office and am grateful for my small sub-office where I have some control.

Vestibular – This is the sense which helps us balance, remain upright and move. Of all the senses I think my vestibular sense is the least problematic. I don’t struggle with swinging or spinning or get over-dizzy. My balance is acceptable. I don’t seek movement or avoid it.

My son is a spinner, he can spin and twirl for far longer than most, smugly showing off his lack of dizzyness. Swinging on a garden swing is one of his favourite things, going ever higher and faster. For most people these activities would be stimulating and energising. For my son they have an intensely calming and relaxing effect, and we have used the swing as a before bed activity when he’s been unable to relax at the end of a day.

Activities like spinning, swinging, jumping and hanging upside down are often assumed to do the opposite of calm, but it’s worth considering what effect they really have, rather than just assuming.

Proprioception – This is perhaps the most important sense, the one that tells our brain where the parts of our body are without needing to look. My proprioception is pretty awful.

This is the sense which makes me trip over my own feet if I’m not concentrating enough on how I’m moving. This sense makes me topple if I stand still with my eyes closed as I drift into my imagination and ‘forget’ I’m standing upright. This is the sense which makes me constantly move, apply pressure to, and fiddle with, my feet, toes, hands and fingers. This sense makes me over-extend my joints, contorting and stretching and hurting, all to remind my brain where everything is.

Proprioceptive feedback makes me feel more grounded, more organised and more coherent. Without proprioceptive feedback I feel floaty, less-grounded, as if gravity isn’t working. Sitting on my legs helps, as does a heavy blanket or a cat on my lap. I try to make use of my need to fidget by knitting and crocheting, but I also use fidget ‘toys’, doodling and random objects to fulfil this need.

My son is also a fidgeter. He craves deep pressure and will throw himself against me or the sofa, he loves rolling around and being squashed. When he was younger one of his favourite things was to be wrapped in a sturdy blanket and spun around, meeting his vestibular and proprioceptive needs.

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The myriad of ways our senses interact make for a complex picture. When one sense is heightened it can cause a chain reaction, sending us into a state of high alert, ready to fight off, evade or hide from the source. Stimulating one sense may calm others, whilst calming one may irritate another. We might be driven to extremes to satisfy sensory cravings, taking risks and harming ourselves in the process.

When we are able to find our sensory equilibrium we feel safe and comfortable, more able to focus, learn, work and relax. When our sensory needs are met we find it easier to do the things we find hardest.

Look into my eyes

A brief post about eye contact

These are my son’s eyes, cut from a photo taken 5 years ago. I know from my studies into facial recognition that the chances of anyone recognising him from this picture are slim, so here he is.

Before I even knew very much about autism at all, I learned that eye contact could be difficult and uncomfortable for autistic people. I was aware that my son found it hard and we used to encourage him to at least occasionally glance at people he was talking to, just to check they were listening (or still awake!).

While he was in the assessment process there was an incident at school and I was called in after school to speak to the deputy headteacher. I was perhaps at my most vulnerable at the time, parenting a child presenting with significant support needs, feeling pretty confident that he was autistic, but still facing mostly unsaid, though sometimes blatant, criticism of my parenting and ill-informed assumptions about the source of his behaviours.

When I was called in, the deputy head told me what had happened and then turned to my son to ask for an explanation. He looked away, probably thinking, and she grabbed and held his face to make him look at her. I froze in shock. I cannot remember what I did at the time, though it is one of those memories which brings with it a deep visceral response even now, 8 years later.

I made a complaint and she never dealt with him again. I still can’t quite believe she did it. He was probably 5 years old. He was in the assessment process for autism. He wasn’t looking at her. Did it really matter? Do we hear better if we look at the source of the sound when it is right in front of us? I don’t think it mattered and I don’t think not looking means not listening.

Since then we have been lucky to have a succession of teachers who, to be fair, have quickly grasped that eye contact does not increase my son’s ability to listen or enhance his concentration. In fact, it does the opposite. He concentrates best when he looks most distracted. If he is made to look at the teacher (supply/locum teachers nearly always expect this as they don’t know him) he hears nothing. He is too busy in the conscious and, to him, unnatural act of looking at a face.

Like many of these autistic commonalities, I hadn’t even realised I had a problem with eye contact. Like many of my autistic realisations, I didn’t know I was different until I knew I was different.

Today was a bad eye contact day. I don’t know why. Sometimes it comes fairly naturally and I am completely oblivious to making eye contact. Today I was conscious of where my eyes were looking during every encounter with a human. In the office, in a meeting with my boss, in meetings with clients and in the lift with colleagues, I could not work out what to do with my eyes.

Once you’re aware that you don’t know where to look it becomes all-consuming. It is hard to concentrate on the matter at hand when you are hyperfocused on your own eye gaze.

Should I look at your eyes? Am I staring? When did I blink? Am I blinking too much? This was raised in my assessment, I blink a lot in eye contact situations. What if I look at your mouth? Then I get distracted and fascinated by your facial hair, the peculiar shapes of your wrinkles or your wonky teeth. And I realise I’ve been staring and forgotten what we were talking about. Perhaps I should glance vaguely in the direction of your eyes but focus on a spot just behind you? Hmm, now I look vacant and bored. And round and round it goes. Note taking is a useful avoidance tactic here.

My son describes experiencing physical pain when forced to maintain eye contact. I don’t find eye contact painful but I have found that some other people’s eye gaze can be quite intimidating. It can also verge on hypnotic, drawing me in and creating a strange compliance in me that isn’t usually present! A former boss had this effect and I now avoid her as I feel compelled to sustain eye contact with her and can’t disengage. If anyone can shed light on this I would love to hear your thoughts🙂

Eye contact can be forced, it can be painful, it can be learned and it can be intermittent. Thankfully, there are plentiful other ways to demonstrate we are listening, aware of and interacting with other people. Which way our eyes are pointing has little bearing on these activities.

‘Fine’

Masking and why it’s so hard to ask for help


[picture shows text on a cream background which reads ‘How are you?’ with ‘Not fine’ crossed out, followed by ‘Fine’]

Struggling to ask for help, being unable to express our needs for support and adjustments, and even accepting help and support when offered, can be extremely difficult and often debilitating for many autistic people. Recognising a need and then finding a way to express it to another person requires a complex set of cognitive, emotional and communication skills.

I’ve been aware of this in relation to my son for many years. It’s only more recently I’ve been able to recognise it within my own life. It is crucial that the people we deal with – our children’s teachers, carers, doctors and therapists; our own employers, teachers, colleagues, friends and family – understand that we might need support, even when we don’t ask for it or realise we are in need of it.

Masking, the conscious or subconscious act of presenting as ‘fine’ when we are not, can mean that we miss out on the support we need. It is often when we are most in need of support that we are least able to communicate our needs. The effort of maintaining the mask uses up all our resources, and the fear of collapse or meltdown in public, at work or school, strengthens our resolve to hold it together.

We mask and hide our difficulties for many reasons. Unmasking and revealing ourselves can leave us vulnerable, highlighting our differences and how fragile we are. If we are able to get the right support and be able to drop the mask our lives are improved. But effective masking means other people don’t recognise we need help and support, and without help and support we can’t lose the mask.

As a parent I have experienced the impact of lack of support for a masking child. As my son progressed through primary school he slowly became more adept at holding himself together and hiding his struggles and difficulties during the school day, resulting in massive meltdowns at home. Because school couldn’t see the problem it didn’t exist. Because he was unable to recognise or articulate problems he didn’t always get the support he needed.

I watched through the classroom window one day just before home time, in the final year of primary school. The class teacher and two teaching assistants were in the classroom. My son was pacing, holding his hands in fists with his arms stiff, his facial expression blank and rigid. He was obviously anxious (as the post-school meltdown proved) but they didn’t see it. I guess that if they’d asked him if he was ok he would have said he was.

A big problem has always been that my son’s verbal abilities and extensive vocabulary make it hard for many people to comprehend that he cannot verbally articulate his needs. Spoken language is just one element in effective communication. Good speech does not necessarily equate to good communication.

It is this discordance, between apparent verbal acuity and poor communication, which causes both me and my son the biggest problems in getting the support we need. Other people assume that our intellect and our vocabularies mean we can say how we feel and what we need. People accept our words, our ‘I’m fine’, as true and accurate, after all, we are notoriously honest, aren’t we?

Luckily, my son has had me, his dad and some excellent professionals along the way able to advocate for him. He is now in a school who believe me when I tell them how he really feels and what he needs, even when he shows no signs of distress at school. They recognise that how he presents and what he says might not reflect how he feels and what he needs.

As a seemingly competent autistic adult, I don’t have an advocate to help me get the support I need. I have to do it myself. When someone asks me how I am, my knee-jerk response is always to reply ‘fine’, even though I am mostly not fine. This is for several reasons:

  • I can’t find the words to effectively express how I feel.
  • I can find the words but I am worried that what I say might be misinterpreted by a neurotypical person.
  • I’m not always very good at filtering my thoughts and can easily come across as rude or aggressive.
  • I worry that my lack of expression and atypical non-verbal communication will counter the extent or urgency of my needs.
  • I worry that I won’t be believed. After all, I look fine, this thing isn’t bothering anyone else.
  • I worry that the thing which is making me not fine will be considered trivial and will be laughed at or not taken seriously.
  • I worry that if I start to say how I really feel I might make myself come across as awkward, unpleasant or too critical.
  • I worry that it will open the floodgates, resulting in losing control by crying or melting down.

And what if nobody asks how I am? If people assume I am fine because I look fine, how do I tell them I am not fine at all?

My health is something which is not fine. I have not visited my GP in years (the last time was by ambulance), despite a number of health concerns, because I cannot find a way to open the discussion. I avoid phoning to book an appointment because of my anxiety around making phone calls.

I do attend the dentist regularly because the check-up schedule means I don’t have to express or articulate my needs, I attend, the dentist asks direct and specific questions and acts on any problems. I can book a dentist appointment while I am there (in dentist mode), and choose a time and day which suits me and will cause the least anxiety. It would help if regular medical check-ups, like dental check-ups, were standard.

Work is perhaps the prime setting for masking as an adult. I have done it for years and, as previous posts have shown, it’s a hard habit to break. After many occasions when I have answered ‘fine’ in supervision sessions with my boss, even when I am not fine, I now try to use email to express my needs. I still go through all the worries I listed above, but I have learned to send the email anyway. I am much better at expressing myself in writing than in speech and I need to find ways to use this more effectively (in fact, I might even write to my GP!).

In contrast, I had an experience earlier this year which, though I didn’t realise at the time, was a perfect example of pro-active support. I was taking part in an event which was completely out of my comfort zone and realm of experience. I did not meet the woman who organised my participation until the event. Before and throughout the event she anticipated what I might find hard and supported me in a multitude of ways.

I’ve heard it argued that having support increases dependence. This is particularly the case with children who have 1-1 support at school. It’s commonly claimed that it reduces independence, providing a useful argument to cut support and reduce funding. When I look back on the event where I had that support, I realise that being supported didn’t restrict me, it empowered and enabled me.

Having someone supportive, to check in with, to keep an eye out for me, to mediate interactions and act as a guide, enabled me to do a big scary thing. What made a difference was not having to ask, just having someone who ‘got it’. This is what is missing for many of us autistic adults in our day to day lives, people around us who understand enough, who can see beyond the ‘fine’ response, to smooth our paths and help us negotiate obstacles.

With support we can do amazing things.

Thanks to Saskia.

Why can’t people be more like cars?

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[image shows a selection of toy cars representing traffic on a road]

Driving is one of my favourite things. It is also one of the hardest things I have ever learned. It requires a combination of spacial awareness, coordination and motor skills, plus an ability to predict the actions of others and react quickly and safely. These are abilities which many autistic people struggle with and I am no exception.

I tend to learn best with a combination of reading and thinking. I don’t find verbal instructions or physical demonstrations particularly helpful. I need to understand, process and order the learning my own way and in my own time. Unfortunately, it’s not really possible to learn to drive from books and thinking alone.

This didn’t stop me from supplementing my practical driving lessons with book reading and spending a lot of time rehearsing and working through scenarios in my head. I had my partner repeatedly drive around tricky parts of likely driving test routes and I became a very observant passenger. After many, many lessons I passed my driving test and became a driver.

I love driving and I love cars. My very first collection as a small child was of Matchbox cars. I get a thrill even now from reading about, researching, test-driving and choosing cars. I am no expert and I do little more than fill up with fuel, inflate tyres, top up the oil and occasionally change a bulb. I am only an ordinary sort of driver, but driving gives me freedom and the ability to get out and about with minimal interaction.

I especially love long solitary journeys. Travelling alone, with music playing loud, to somewhere I want to be, or just for the fun of driving. This week I drove a couple of hours each way to meet a friend and as I was driving, singing along to the CDs, I got thinking. Why can’t people be more like cars?

Interactions between cars are bound by rules. The Highway Code provides rules for almost every encounter you might meet when driving. Not everybody follows the rules, but most drivers do. This makes our interactions as drivers so much easier than when we are stripped of our cars and have to interact without our vehicular shields.

When I am driving I know where to position myself on the road. I know where I should be and other drivers position themselves in a predictable and logical manner.

I can signal my intentions easily. Other drivers understand and use the same signals. This might be my indicator lights to inform other drivers that I plan to make a turn or my reversing lights to show my intention to reverse.

Most drivers respect distance and don’t come too close, they make space for others to join traffic and overtake safely.

Manners are simplified. Instead of complicated social rules, lifting my hand to a waving position shows thanks and gratitude to a kindly driver.

As a driver, I can make small gestures of kindness without the worry of misinterpretation. I might flash my headlights to let another driver pass by on a narrow road, or slow down and flash my lights to enable another driver to enter the road from a side street.

Driving provides a sort of simplified set of rules for interaction, communication and sharing the world. We all benefit from following the rules and not over-complicating things.

When I’m driving I don’t feel inhibited and I don’t worry endlessly about getting things wrong like I do in the social world. Driving makes me feel competent and on equal terms with the other drivers.

I don’t really want people to be like cars and, after all, it is people who are driving the cars. It’s human innovation and spontaneity, in action and thought, which makes the world an interesting place to be. But just sometimes it would be nice if we all played by the same rule book. It makes life much easier.

Time and space in autismland

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[image shows an old clock face, stuck on quarter to six]

I spent a day at work this week where I only talked to people when I needed to or wanted to. I was genuinely surprised at how much better I felt at the end of the day. Instead of using up precious resources to perform exhausting and non-essential social acts, I ended the day with resources to spare. Spare resources means having time and space to choose things I want to do, not being restricted to only things I have to do.

When I talk about my resources, I mostly mean my cognitive and emotional capacity. My ability to think and cope fluctuates depending on the demands placed on me. This includes demands from other people and demands I place on myself, alongside family, cultural and societal demands. Managing these demands requires time and space. Time to think, plan and recover. Space to be me and to remove myself from demands.

I spend a lot of time planning and preparing for the day and the days ahead. I perform a series of mental calculations working out how best to prepare for demands and how I plan to recover afterwards. As well as thinking time, every demand requires time before and after. A lot of my time is spent thinking about and calculating time.

My two consecutive working days every week use up four days of my week. The day before is taken up with preparing, worrying, planning. The day after is spent recovering. If I have a dentist appointment, need to go shopping, visit the bank or attend a meeting at my son’s school, I go through the same process, allowing time before and after. I try to make sure these activities are spread out to allow sufficient time in between for necessary preparation and recovery time.

Ordinary activities seem to take up more time for me than for many people, even something as simple as my car needing a service. Most people drop their car at the garage and get on with their day, knowing the garage will phone at some point. They might worry about an unexpected bill, but their day carries on as usual.

For me, I first have to phone the garage. This takes time planning the call and rehearsing what I need to say. Then I have to plan and rehearse for dropping off the car. I then need to be prepared for the phone call from the garage to tell me the car is ready or to give permission to carry out repairs. After these actions I spend time going over and analysing the interaction, fretting about faux pas and all the things I forgot to say and ask.

I find myself unable to do anything until I’ve heard from the garage. I worry that if I start something I might be interrupted. Being interrupted is one of my least favourite things. If I start a task I need to know how long I will spend doing it and have a plan in mind for the next task.

If the garage haven’t phoned by the time they said they would, I worry further. Should I wait or should I phone? What if I gave them the wrong number? What if they forgot about my car? What if me phoning takes the mechanic away from my car, delaying the service? Will the mechanic be annoyed I’ve phoned? Will I come across as rude for phoning when he said he would call? Am I being a nuisance? What exactly is the convention and why didn’t anyone teach me?

Managing my time effectively provides a foundation for my days. Sequencing demands makes them easier to manage. But if my day is disrupted I struggle to move forwards. If I have to miss a part of my routine it is almost impossible sometimes to do anything at all. When my boiler broke, and I was unable to have my planned bath that morning, I found it impossible to do any of my planned tasks that day. I couldn’t move to the next task as I hadn’t completed the first. It seems irrational and illogical and really quite flaky, but this is how it is.

I also spend a lot of time prevaricating and avoiding demands. I am aware that I need to do certain things (tidy a room, carry out repairs, email school, weeding) but I put them off. It doesn’t stop me thinking about these things, I just find it hard to move from thinking to doing. I waste a lot of time.

Problems with transitions between activities are often talked about in regard to autistic children. Us parents work hard to find ways to bridge transitions and make them easier for our children. We might use visual schedules, timers, verbal reminders or create novel ways to bridge the gaps. I need to find better ways to support transitions in my own life. I need to find a way to make the start of new activities and demands easier for me. I need ways to better manage disruption. I don’t want to waste so much time.

For me, space is both an internal and an external factor. I need inner mental space to think and I need outer physical space too, free of the demands of other people.

Having mental space and the capacity to use my emotional and cognitive abilities as best I can is largely dependent on the absence of demands and the presence of physical space. Physical space for me isn’t about vast swathes of uninterrupted countryside (though that would be nice) or large indoor spaces. It’s about having a physical space where I feel comfortable and protected, a space where I won’t feel overwhelmed by social or sensory demands.

City centres, busy supermarkets, tourist attractions in the height of summer and open plan workspaces all take up too much space and can result in me shutting down, unable to perform all but the most basic functions. If I can hold it together at the time I might meltdown later. But even a meltdown requires space. You can’t release the pressure until you’ve escaped the vacuum, which may not be a scientifically correct analogy, but it is how it feels to me.

Finding ways to create space can be challenging when there competing demands on my time. But it is essential. My ‘special interests’ both create and occupy space. When I am engaging in my crafting activities I become consumed by the process, but it also frees space for other thinking. I am more able and more constructive when I am engaged in my chosen activities. The filling of space by choice rather than by demand seems to open up more space. It makes me more capable and more competent.

What I am realising is that though I have plenty of time, I struggle to find space. The time I waste on planning, preparing and recovering stems from a combination of anxiety and executive functioning problems. I am trapped in a vicious cycle of demands, anxiety and poor organisation. I need to make time and space for the things which relieve the pressures, and then I may gain some time and space to deal more effectively with the demands.

Moving forwards, having spent a day ignoring non-essential social demands, I realise more than ever that I need to find ways to remove, ignore or sidestep some demands so that I have some time and space left for me. It won’t be easy, I have many years of social expectations and habits to change. But I’m going to try.

A day in the life of a ‘food refuser’

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My son has a severely restricted diet and, like many autistic people, he has strong sensory aversions to the appearance, smell, texture and tastes of a variety of foodstuffs.

He was breastfed and weaning started well. He tried and enjoyed a range of the usual weaning foods but slowly started refusing foods he had previously enjoyed. By the time he was 3 he was refusing to eat most food offered and by the time he started school his diet had settled into a now familiar routine of Marmite sandwiches, Marmite rice cakes, yoghurt, smoothies and fig rolls (fig newtons).

Breakfast

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This image shows a plate holding crustless Marmite sandwiches, a small yoghurt and a multivitamin tablet. Alongside is a carton of smoothie. This is a standard breakfast for my son.

Sometimes the bread will be toasted. The carton of smoothie is vital as he refuses to eat fruit and vegetables, apart from a very occasional banana (which must be at an optimum level of ripeness, have no blemishes and, open easily and in a tidy fashion). Supplementing with a multi-vitamin and mineral tablet is vital to top up the essential nutrients he lacks in his diet.

Breakfast is the easiest meal of the day in many ways. It is almost always eaten at home and is fairly easily replicated if we are away.

Lunch

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This image shows crustless Marmite sandwiches, a chocolate chip brioche and a Frusli cereal bar. On a school day he will take a packed lunch of Nutella sandwiches and a small chocolate bar. He does not have butter in his sandwiches and dislikes the way Marmite soaks into the bread.

Sometimes the brioche is swapped out for a crepe, and sometimes the Frusli is replaced with fig rolls. If we go out for the day we have to take a packed lunch as finding a place to eat which will have suitable options available is unlikely. The cereal bar is a new introduction to his diet and followed an extensive tasting session to find easy snacks for out and about.

Snack

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This image shows a bowl of Marmite rice cakes. They are served in a bowl as my son struggles with the sensations of eating from the bag. On a school day he will have these rice cakes when he gets home from school and they have become part of his after-school decompression routine.

Dinner

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This image shows 3 plates. One plate holds some well-done smoked streaky bacon. One plate holds crustless Marmite sandwiches and a pot of chocolate mousse. One plate holds a piece of homemade chocolate birthday cake.

My son has not eaten what might be considered a ‘proper dinner’ for many years. The last such meal was spaghetti bolognese about 7 years ago.

Bacon is the only meat my son will eat, and he would happily eat it every day. The sandwiches at dinner time are often replaced by a toasted bagel or little rolls, but always with Marmite. The chocolate mousse on this occasion was a treat and this element would usually be a yoghurt. Homemade cakes are a good way to introduce some eggs and butter into his diet and cocoa contains trace minerals.

He will occasionally eat very dark chocolate which offers some micro-nutrients and iron. Nutella contains some nuts, as do occasional Ferrero Rocher and peanut M&Ms. His favourite Innocent smoothies now come in varieties which include beetroot and carrot. Every little bit of goodness, wherever it comes from, helps when a diet is so restricted.

Despite the limited nature of his diet, my son is healthy, growing, developing and learning. An analysis by a dietician a few years ago found very little lacking and we were able to make little changes to address these deficiencies.

What have I learned?

  • Some children will not ‘eat when they are hungry enough’. A child like mine would rather starve than eat unpalatable food.
  • Hidden food will be discovered. I have still not been forgiven for the smidgen of soft cheese in a Marmite sandwich 10 years ago.
  • Hiding food in a favoured food might lead to the refusal to eat that food again. Trust is important. I ignored the advice to blend tofu (!) into a smoothie because smoothies are my son’s only reliably consumed source of fruit and vegetables.
  • No, he won’t copy his peers and eat what they eat. He doesn’t even notice his peers, let alone want to be like them.
  • Growing our own fruit and vegetables is fun, but his aversions and sensitivities are too powerful to overcome by novelty.
  • Getting him involved in cooking, ditto.
  • Just because he tried it and ate it once does not mean he will continue.
  • Carrying out ‘scientific’ tasting sessions with score charts has resulted in small successes.
  • Agreed changes and diversions are more likely to be accepted than subterfuge. My son needed to up his fibre and protein, we discussed a range of sources and he agreed to eat wholemeal/seeded breads and bacon.
  • It is ok not to eat together. My son eats at his chosen meal times and likes us to chat at the table as he eats. He often comes and talks to us when we eat our meals, depending what it is, he likes the smell of Italian and Indian foods but not the smell of fish or Chinese takeaway.

I am hopeful that my son will broaden his diet as he gets older. I try to make sure he can identify different foods and he has learned to cook a few basic meals. We talk about food production, sourcing, ethics and welfare. It is important he has a vocabulary to draw from should he choose to become more adventurous in the future.

I used to worry a lot about my son’s diet. It’s an area where parents face a lot of judgement and get given a lot of unsolicited advice. It’s hard not to think we aren’t trying hard enough, though I’ve yet to encounter a parent of a child with a restricted diet who hasn’t tried very hard indeed.