Gatekeepers, hurdles and ignorance on the path to diagnosis
Despite increased awareness of autism in women, there are still too many cases of women being unable to access or denied assessment. Whilst the average waiting list time for adults from referral to diagnosis in the UK is around two years, many women are not even getting on the waiting lists as their access is scuppered by gatekeepers, hurdles and ignorance.
The NICE Guidance for Autism in adults provides a set of principles to identify who should be referred for assessment and best practice guidance for the assessment and diagnostic process. Very simply, if an adult might be autistic they should be referred for assessment. Local health authorities are supposed to provide clear diagnostic pathways to carry out assessments, staffed by trained, competent professionals. Unfortunately, the postcode lottery of the NHS means that whilst some areas have fantastic services, others are fragmented, inaccessible or non-existent.
When I first started seriously considering assessment for myself I looked into my local provision and researched the experiences of others in my area. I quickly concluded that the cumbersome set-up here would require me to get past a series of gatekeepers and I did not feel strong enough to do that. At the point where I most needed diagnosis I was least able to advocate for myself.
For me, these gatekeepers would have started with my GP and progressed through the filtering layers of local mental health services. I would have had to ‘state my case’ repeatedly to a series of people with the power to let me through to the next level, until eventually, if I was lucky, I would reach the autism specialists. The prevailing ‘deficit model of autism’ would have meant me needing to repeatedly explain my failings and inadequacies to new people. Over and over I would need to elaborate on my deficiencies as a human. I just couldn’t face it.
The fundamental problem with this model is that the gatekeepers are not autism specialists, they often having minimal training and little experience of autism. If they are relying on the prevailing stereotypes of autism, and I have met many professionals who do, they are unlikely to see the autism in a superficially capable autistic woman.
Like me, many women who seek diagnosis as an adult have reached a point in their lives where demands have exceeded capacity. We are often fragile and vulnerable at the point where we ask for help. Many women, when told by a gatekeeping professional that they do not meet the criteria for assessment (bearing in mind that this criteria is often outdated and sometimes unfounded) give up. Often these women have far more knowledge and awareness of autism than the professionals tasked with gatekeeping.
Gatekeepers need to be be equipped with the knowledge, skills and tools to ensure that those in need of assessment get assessed.
Once past the gatekeepers the path to assessment may still be littered with hurdles. A common hurdle is when diagnostic services will not diagnose without the involvement of a family member who can provide information about childhood development. The reason given is that for a credible diagnosis there needs to be evidence of autism being present in early childhood. This particular hurdle is problematic in several ways.
Many adults seeking assessment do not want to tell their families of their suspicions. This might be because they don’t want to worry their families, or they feel that their family would be unsupportive, or because of difficult family relationships.
As we get older the pool of people who might be in a position to verify our early development gets smaller. Memories become faded and unreliable. Our loved ones might struggle to remember long ago details or may feel disloyal recounting detail of our struggles and problems.
Some adults lose contact with wider family members. Our social and communication difficulties might mean we struggle to maintain relationships with our families. We might have cut off, or been cut off by, family members who we find hard to maintain relationships with.
Autism is always a ‘best guess’ differential diagnosis, one made on a balance of probabilities. If evidence from adulthood, through self report, clinical presentation or scores from recognised diagnostic tools, is indicative of autism, it is my opinion that diagnosis should be given.
Lisa Sanders’ 2010 book ‘Diagnosis: Dispatches from the Frontlines of Medical Mysteries’ (London: Icon Books) describes the centrality of ‘patient story’, how 70-90% of medical diagnoses are made on patient account alone. If this is the case across medicine, it begs the question of why autism diagnosis is held to a different standard. How can a patient’s account be enough for most of medicine, but not for autism?
Autism diagnosis should not be withheld in the absence of family verification. Clinicians need to have faith in their patients, themselves and the tools they use.
Having spent a long time exploring and working myself up to request assessment, I became increasingly aware that many women were being denied access to assessments because they were considered too capable. It seems that for some gatekeepers, clinicians and assessment teams, being educated, having a job, a mortgage, being married or in a stable relationship and being a parent, means you can’t be autistic.
These clinicians seems to have missed the part in the DSM5 which states that ‘symptoms’ “…may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life”. I knew that, superficially, I was doing great. I have a home, a family, an array of academic and professional qualifications, and a job requiring adaptable and nuanced communication across a very broad range of clients and needs. How could I persuade the gatekeepers that I was, in fact, about to crumple?
I have written before about masking and performing normal. Masking can be an active choice but is often more subconscious, a product of our socialisation and experience. Some of our masks may start as choices but over time they become almost automated. Without thinking about it our subconscious applies the correct mask enabling us to adopt the roles we need to manage the spheres of our lives.
Dig a bit deeper beyond the surface and very often you’ll find a hoard of sophisticated coping strategies. We have no choice but to develop these coping strategies to help us lead our lives as best we can. Masking is often a big part of this. We often spend so much time on managing our coping strategies that we have no time left for ordinary life. This is where you find the hidden autism. And when you look deeper, it’s often not very hidden at all, you just weren’t looking properly.
Denying assessment to people who appear too successful to be autistic implies that autistic people cannot be successful. This is a very worrying assumption.
It is also wrong.
edit: I was lucky to be able to fund a private assessment through a charity. Many people are not in a position to do this. That is why I wrote this post.
This week I had an (unsuccessful) interview for a role which I was quite capable of doing and which would have fulfilled a long-held ambition. I am not confident or arrogant enough to have thought I stood a chance against the competition, but I had hoped to demonstrate my capabilities at interview and to come away believing that I had given my best.
Instead, I completely fell apart.
Despite being diagnosed autistic, I still have moments when I wonder if the diagnosis was wrong. After all, I manage to balance the demands of work and family life, I am independent and fairly well educated. I didn’t think I needed much in the way of support and adjustments. But, slowly, I am realising that for me to move forward, out of my carefully constructed safety bubble of the familiar and predictable, I do indeed need support and adjustments. My autism is limiting me and I want to stretch those limits.
In common with many autistic people I have spent hours analysing my performance and trying to work out what went wrong and what I should have done differently. If I had a time machine and could return to the day I was invited to interview, what advice would I give myself? What should I do next time?
Book a hotel room: even though the interview was little more than 20 miles away, terrible weather disrupted my travel plans. I have an appalling sense of direction and getting lost ate up my contingency and last minute preparation and relaxation time. A night away from the responsibilities of work, home and parenting might have helped me get into and establish my role.
Ask about the interview room: and let the interviewers know about any sensory problems. My interview room was very hot and I was distracted throughout by an electronic buzzing noise. A picture of the room would have helped so I knew what to expect.
Ask about the dress code: I would have been more comfortable if I hadn’t tried to smarten up from my usual fairly casual workwear.
Ask for the interview questions to be presented in written as well as verbal form: interviews are stressful for most people, but, as I discovered, for some autistic people (like me!) they can be so anxiety-provoking that processing information and verbal skills are severely impacted. I struggled to both process the questions and formulate coherent responses. Had the questions been written down I would have been able to take my time to read and think before speaking.
Ask for the main questions in advance: it is not unusual for many of us autistic people to struggle with situations where we have not been able to prepare. It is basic autism awareness to limit surprises and prepare as much as possible to enable many autistic children to participate. Autistic children become autistic adults, and our needs for support might change as we get older but they don’t all disappear.
Ask to take notes into the interview: despite copious preparation, I failed to recall any of my prepared responses or themes. None of the interview questions were a surprise, but, coupled with my already hindered processing, and perhaps some literal interpretation, my prepared scripts proved elusive. Some brief notes under potential headings and keywords would have helped jog my memory and provided a framework for my replies.
Ask to meet the panel ahead of time in a more informal setting: I realise that this might be a step too far for some interviewers, but walking into a room of strangers was my tipping point. I struggle to meet new people even at my best (except at work where I am in ‘work role’) so some element of familiarity would have reduced my anxiety. This could also be ameliorated by conducting part of the interview in a non-verbal format, perhaps written questions and responses by email followed up by a face to face interview.
Don’t look at lists of what not to say: it appears that, when under pressure, if my brain is given a choice between ‘what to say in this sort of interview’ and ‘what not to say in this sort of interview’ it will opt for the latter. Next time I will only focus on what I should say.
The interview panel were very kind, and I have had encouraging feedback about my written application. Next time I will be proactive in asking for adjustments so that I can show that the me in person matches up to the me on paper.
This post was originally published as a three-part series entitled ‘Managing Violence’. I have decided to re-publish the series as a single article (as originally intended) which can stand alone as a resource for parents and schools. I’ve spent a lot of time pondering the title, should I replace the word ‘violence’ with another? I considered changing it to ‘meltdowns’, ‘anger’ or ‘challenging behaviour’, but decided to stick with violence as that is what people see.
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.
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.
Whilst 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”
Making the world an easier place for our children
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.
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, negotiation and compromise are key (more on that later).
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.
Practical solutions for reducing anxiety, increasing self-regulation and managing violent behaviours
So far, this post has been exploring ways to reduce violent behaviours which present as a result of heightened anxiety. We’ve looked at what doesn’t work and we’ve made the world a better place for our children. Now we need to equip our children with the right equipment to navigate the world – the maps, tools and guidebooks which will help them face the challenges of their journey.
I do want to say though, that none of this is rocket science, there are lots of us parenting like this, I just want to explain it for people who don’t understand or who need a confidence boost.
A lot of existing strategies for helping autistic children navigate the world are, in my opinion, not helpful and are often disablist (ableist for my American readers). If a child is exhibiting autistic behaviours at school, such as harmless stimming, choosing solitude or lashing out in fear, schools almost always offer a fairly standard social skills or ’emotional literacy’ package. These interventions tend to be built on a premise of neurotypical behaviour expectations with success measured by the achievement and emulation of neurotypical norms.
My son has attended a couple of these sort of interventions, the most recent was an ’emotional literacy’ programme provided by school. He didn’t learn anything useful, but it was a handy escape from his least favourite lesson. If quantitative measures had been used to record pre- and post- programme emotional understanding and anxiety levels, his would have shown a positive change. It would have looked like a successful intervention. But it wasn’t really. Attendance on the programme merely provided respite from a highly stressful subject. It was beneficial, but not in the way the developers of these programmes would expect.
How to develop emotional understanding
Despite my concerns around traditional ’emotional literacy’ programmes, it is important that we help our autistic children to develop their emotional understanding, expression and regulation. If we want our children to learn how to advocate for themselves they need a vocabulary to express their emotional needs.
For a long time my son’s main emotional expressions were either super-fantastic-best-day-ever or terrible-suicidal-worst-day-ever with little in between. Any vaguely happy emotion was expressed as deep joy but any vaguely uncomfortable emotion (sadness, envy, fear, hurt) would be expressed as anger. It’s not very easy to support a child where every problem is a catastrophe. And before we even started to name emotions we needed to get to grips with the nuance of emotions, the shades of grey in between the extremes.
Scaling and relativity
I didn’t realise at the time, but a simple scaling activity I carried out when my son was about 5 or 6 would lay the groundwork for an approach we still use today. He was having difficulty explaining pain and discomfort. It’s fairly common for autistic people to have unusual pain responses, but it’s quite hard to deal with a child when every injury or illness, however minor, presents like the throes of death.
His interest at the time was sea creatures, so we created a 10 creature scale ranging from plankton, through shrimp, lobster, shark and others up to blue whale. He chose which creatures and he drew the pictures. We then used this scale to talk about a whole range of hypothetical injuries and were able to order them according to severity.
What this did was show how pain isn’t an absolute, that it’s all relative, and that some pain, injuries and illnesses are bigger (worse) than others, and that some are quite small and not really not very serious at all. We could talk about how his pain responses and expressions of illness were also on a scale, and look at whether they were proportionate reactions. Instead of asking ‘are you making a mountain out of a molehill?’ I would ask ‘are you making a blue whale out of a plankton?’.
Over time the scale became a general scale for assessing the severity of any problem and his reactions and responses. Using logic has been important. Sometimes he can be talked out of a rage by returning to this simple scaling. Mostly now we use numbers instead of sea creatures. It doesn’t require him to recognise or name emotions, which remains difficult for him, but it gives a way to express himself and explain how serious something is in a way that’s fairly easily understood.
Note to schools: if parents have found an effective way to support their child in recognising and expressing their emotional needs, please use it. Don’t assume your costly emotional literacy programme is better because it’s been validated. Also, don’t assume that what parents are doing isn’t as valid as your programmes. I later realised that my make-it-up-as-I-go-along scaling exercises have got an evidence base too:
Alert Programme – this is a short intervention programme usually run by Occupational Therapists using sensory techniques to manage concentration, alertness and mood. The programme is reliant on a ‘body as an engine’ analogy and the need to keep our engine running well, but accepting that sometimes we need our engines to slow down and sometimes they need to speed up. A speedometer is used as a scale. The child learns how to monitor their engine (body) and what can help change their engine speed through a series of sensory activities.
The Incredible 5-Point Scale – uses scaling as a way to address a whole range of behaviours. I looked at this after we had been using scales for a few years. It’s a little prescriptive for me, but there’s a lot of sample scales on the internet which are worth a look.
Solution-focused (brief) therapy – this is a therapeutic approach which builds on pre-existing skills and looks for solutions to problems. Part of the process is scaling as a way to break down progress towards a solution into smaller achievable steps. The language of solution-focused therapy is useful because it fosters confidence and self-belief.
If my son is having a ‘bad day’ I might ask him ‘if a really bad day is 0 and a really good day is 10, where are you now?’, if he answers ‘3’ I would ask ‘what could make it a 4?’ And we would try to do that. I try not to give him the answers and I try to remain forward thinking. However, without having done the earlier scales of sea creatures to explore pain and illness, which is much more tangible than these pesky emotions, I think this approach would have been too abstract. Starting with the body’s physical expressions made it easier to get to grips with emotional expression.
One of the problems with my son struggling to recognise or express anything but the extremes of emotions is that it is harder to take early action to prevent the more extreme reactions. If you are not aware that you are getting more anxious until you lose your temper or have a meltdown, it’s impossible to either ask for help or take action to address the problem.
In conjunction with the scaling exercises and discussions we focused on the physiological signs of the important emotions. Moving away from describing emotions in the abstract and toward describing how they make your body actually feel was a helpful step. It’s worth noting that as well as autistic people often having unusual pain responses this also applies to bodily sensations, including temperature regulation, hunger, thirst and the need to go to the toilet.
Most people, neurotypical, autistic and everyone else, get irritable when they’re too hot, hungry or unable to get to a toilet. Imagine having that sense of rising irritability but having no idea why. It can take me several horrible hours to work out the reason why I feel grumpy and fractious, and I’ve had over 40 years experience as a human. Our children are still in the very early days of learning this stuff and it’s up to us to help.
We need to support our children to recognise their early warning signs, and give them a way to assess their level of comfort/discomfort before they explode. Talking openly and honestly about what we find overwhelming can help our children spot their own triggers and patterns. When things are calm we can talk about what happened and what could have helped.
Keeping a diary is probably very useful but I’m too disorganised to do this. Slowly my son is developing his own mental checklists and escape plans. As he learns more about the early signs he gets better at responding to them. What started with me doing most of the thinking and puzzling has slowly morphed into him doing more of it for himself.
Note to schools: even the most verbose and articulate autistic children can have significant difficulties expressing their emotional and physical needs. Please listen to parents who tell you what to look out for, and actually look out for it. My son tenses, glares and growls when his anxiety is rising, he won’t use words even though he has excellent spoken language. If you take the time to intervene early, send him on an errand or let him pop outside to decompress for a bit, he might recover quickly and be able to get back on task. If you ignore the signs not only will he be unable to concentrate, but he will probably lose his temper.
A fairly common factor among children who lash out and behave violently is demand avoidance. At its most severe it is characterised by a form of autism called Pathological Demand Avoidance (PDA). PDA is underpinned by high levels of anxiety which are expressed through a need to exert control. Children with PDA will strongly resist and appear to over-react to ordinary requests and expectations.
Demand avoidance is not exclusive to PDA and many children across the autism spectrum, and with other neuro/developmental conditions, can present with demand avoidance. What can confuse parents, carers and teachers is that autistic children presenting with demand avoidance are unlikely to respond to the sort of standard approach often recommended on autism courses.
Earlier, I wrote about controlling the world, through using routines when needed but encouraging flexibility when possible. Combining the security of routines with the creative flexibility required to support demand avoidance is a tricky balancing act. Reducing and disguising demands is fundamental to parenting PDA-style. We do this by prioritising and reducing demands to an absolute minimum, and then ensuring that demands are not presented as demands.
Reducing and disguising demands
Demands can be reduced by making life easy, for example, school is packed full of demands so by getting my son’s bags and uniform ready he has more capacity left to cope with the more important demands. We reduce demands by limiting activities and expectations, allowing him as much time as possible to make his own choices about how he spends his time. We disguise demands by using humour, novelty and indirect requests, as well as giving choices as much as possible. I try never to answer ‘no’ or frame a demand in a way that can be answered ‘no’.
A longstanding issue in our house is my son putting his shoes on in the morning before school. It dates back to when school was pretty awful and putting shoes on became the main expression of anxiety couched as demand avoidance, and would result in kicking and stamping to prevent putting shoes on. My son simultaneously wanted to go to school (because he wanted to learn and school is just what you do) and didn’t want to go (because school was unpredictable and overwhelming).
After realising that bribery, incentives and threats of sanctions didn’t work, and just made things worse, I started to be silly. I might pretend to put the shoes on myself or ask if he wanted ‘socks or shoes first?’ or forget what they were for. He’d laugh, it stopped feeling like a demand and he’d have his shoes put on. Now, as he enters his teenage years I still put his shoes on for him on the days I take him to school. He is perfectly capable of putting his shoes on, he wants to go to school, he isn’t even very anxious most days, but it’s become a game. I think it’s a way for him to have a little win before he goes to school where he faces numerous demands all day.
Note to schools: children who struggle with demands aren’t doing it to be a nuisance, they’re not spoiled brats used to getting their own way. Such children genuinely experience high levels of anxiety and this is how it is expressed. In the same way you would take the time to comfort a child crying due to their anxiety, please take the time to support those who display their anxiety in different ways. A little time thinking about how to word a request can take up a lot less of your time than demanding compliance, not getting it and then the whole thing escalating to meltdown. Pro-active support might take some time to think and do, but it is a lot less time consuming and stressful than dealing with a cycle of refusals and meltdowns.
Compromise, negotiation and problem-solving
We can help our children cope with demands by modelling and teaching compromise, negotiation and problem-solving skills. It is my view that compliance is a risky, potentially dangerous thing to aim for, and I worry about approaches built on compliance. Autistic children become autistic adults and we are vulnerable to abuse, manipulation and exploitation. We need our children to not be trained to be compliant. Our children need to be able to say ‘no’ to things they feel uncomfortable with and to be able to challenge requests and demands from people they encounter. Teaching our children positive ways to respond to such demands is a good way to help them safeguard themselves now and in the future.
One of my favourite books is Ross Greene’s ‘The Explosive Child’ and if you haven’t read it, you should. It uses a problem-solving approach which is perfect for many demand avoidant children. It is based on a premise that ‘children do well if they can’ and that it’s up to us to help our children develop the skills they need to help develop more flexible thinking. I don’t strictly follow the method (I am a little demand avoidant myself) but use a broadly similar approach. This is the book that gave me the confidence to abandon traditional reward/sanction methods and instead focus on thinking and skills acquisition.
Learning to offer a compromise or negotiate terms can be worked on any time we parents want our child to do something or they want something from us. We need to pick our moments, when our children’s anxiety is low, and create or maximise opportunities to rehearse these skills.
I started by prompting my son to offer a compromise. So, he might ask for something or to do something I’m not really keen on or it’s not the best time. Instead of me saying ‘no’ I might say ‘hmm, not sure… I want to say no but perhaps you could offer a compromise?’ and if he does, I would accept the proposed compromise as a way of showing it’s worth trying. I might model compromise by openly explaining I’m not keen on doing something he wants but that I will do it for X time or within agreed bounds.
Using this sort of approach is helpful for problem-solving too. It’s very tempting when our children present us with a problem to try to solve it for them but we need them to learn how to problem-solve for themselves. It’s up to us to show how to do this and support our children to try for themselves. Asking ‘what can we do about that?’, listening and trying whatever solutions they present, reviewing how it went and learning from it as we go.
Note to schools: demand avoidant children who are prone to inflexible thinking need opportunities to develop their problem-solving skills and the art of negotiation and compromise. If a child who is usually highly demand avoidant and oppositional tries to negotiate with you, please try to find the time to support them. They might be testing out new skills and need you to show that it’s worth it. Please also respect a child who tells you they can’t do something, don’t try to force compliance. Please use your own communication skills to find a way to negotiate or come up with a compromise.
This post started as a way to show how to manage violent behaviours in (primarily, though not exclusively) autistic children like my son. As you can see, I have barely mentioned tackling violence, and have focused on reducing anxiety and developing emotional and thinking skills. For me, tackling the violence is pointless, the violence is just a product of the anxiety, overload and yet to be acquired skills.
I’ve often heard parents of autistic children justify their parenting interventions by claiming it is evidence-based. I’m not sure autistic children need evidence-based parenting any more than neurotypical children do. However, it can help to have evidence to back up why our children might need a different approach in schools, activities or therapeutic settings, which is why I have mentioned sources of evidence to back up my approach.
To an outsider, many of my interactions with my son when he is being more challenging look like I’m doing nothing, but all the ‘work’ (if you want to call it work, it’s just parenting to me) goes on behind the scenes. I’ve long stopped caring about how my parenting looks, and now only care that my son is happy and able to achieve his aspirations. It is up to me and the other people who love, care and teach him to create a platform for him to achieve this.
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.
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.
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.
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.
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.
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.
[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.