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Autism does NOT reduce your life expectancy – being Autistic does…

Death has been on my mind for most of my life. The uncertainty and relative unpredictability of it has made it an attractive topic for a hyper-focused deep-dive; seeking answers, clarity and a desire to find a crumb of certainty.

Some of those thoughts have led to dark places and some have been refreshingly liberating. It does not surprise me that autistic people are nine times as likely as our non-autistic peers to die by suicide. We are more likely to experience traumatic life events including bullying and adverse childhood experiences. We are less likely to be in work – and it is well known that unemployment increases risk of suicide. Autistic people have higher rates of mental illness. We experience multiple social factors that relate to increased suicidality such as needing to rely on food banks or being isolated and/or lonely.

Suicide is an issue of inequality. Death due to suicide is not evenly distributed across genders, social class, geographical area, and ages. The Samaritans have plenty of data about this – and are a source of support if reading this blog is distressing, or for any occasion where you need to reach out…and do please reach out. There IS support, and suicidal feelings and thoughts can and should be spoken about. It IS possible to get through that moment when you’re desperate or on edge. Talking or texting or emailing can help make sense of feelings and thoughts that seem indescribable, and there is ongoing support out there. You don’t have to be suicidal to seek help.

Suicide is not the only reason why autistic people die younger than our non-autistic peers. Some of the social issues we face like unemployment, poverty and isolation impact our health. Many of us have lived with toxic stress.

A certain amount of stress is essential, but toxic stress in infancy and childhood can lead to increased vulnerability to a range of mental and physical health conditions and health-harming behaviours over the life-course, including depression, anxiety, cardiovascular disease,
diabetes, stroke, alcoholism and drug abuse.

Autistic children are not only more likely to experience ACEs (adverse childhood experiences), their sensory experiences are likely to be different to those of their non-autistic peers and may result in Sensory Trauma.

This combination of factors can lead to us experiencing poorer mental and physical health outcomes, and in itself may be significant in why we have a lower life expectancy than our non-autistic peers. Add to that the difficulties we may have in noticing, recognising and communicating what is happening in our bodies due to our interoceptive processing differences and increased risk of trauma, it does not surprise me that our physical and mental health outcomes are poor.

So what happens if we are able to pick up on what is happening inside our bodies and wish to communicate that to the relevant professionals? It is well recognised that autistic people face numerous barriers when accessing health services.

Research shows that autistic people have high levels of co-occurring mental health conditions, yet a number of case reports have revealed that autistic people get the wrong mental health diagnosis and are less likely to agree with a mental health diagnosis because they didn’t feel their healthcare professional understood their condition or how to communicate with them properly.

An event causing Sensory Trauma to an autistic person may be perceived as inconsequential by non-autistic people in the same environment – if perceived by them at all. The autistic person’s reaction may be viewed as “challenging behaviour”, overemotional, or maybe not even accepted or believed – simply because the event may not be recognised as traumatic to other people. The invalidation and mislabelling that accompanies this may – as in my case – lead to an autistic person doubting their genuine experiences and eventually mistrusting their own judgement and expertise on their health and life. They may avoid seeking help or speaking out about their physical and mental health experiences, or they may not receive the medical treatment they require – or even receive unnecessary and harmful treatments and interventions for conditions they do not have.

A study in Ireland reported 80% of autistic people had difficulty visiting the GP. Whilst people with a learning disability can access yearly GP health checks and liaison nurses in hospitals, the same is not true for autistic people, with large areas of the UK having neither.

Autistic people have significantly lower life expectancies than the rest of the population. A statement from the UK government in 2021 quotes the data reported by the British Journal of Psychiatry that autistic people will live 16 years fewer than their non-autistic peers. Another report compares the range of average life expectancy for autistic people from 39.5 years to 58 years, to the global average of 72 years.

Whilst there are numerous examples of autism’s co-existing physical and mental health conditions, I do not believe research should be focused on identifying whether there is a biological or genetic component to this or not. Too frequently I hear anxiety or some other condition described as “part” of autism and therefore to be expected and accepted. It is time these ideas were challenged. Autistic people, whether they also have a learning disability or epilepsy or gastrointestinal disorder or are like much of the human race – simply average or thereabouts – deserve to have a good quality of life.

We know that epilepsy often co-occurs with autism. We know that people who experience epileptic seizures have a reduced life expectancy. But whether epilepsy and autism share a genetic component that make them more likely to occur together is largely irrelevant to an autistic person’s life (unless you were considering terminating the person before birth, in which case it becomes very relevant). What is relevant is that the person can access the services they need and receive the support they require to understand, self-manage and accommodate their epilepsy. And that will come about by designing services and treatment that meet the needs of a wider range of people. It will come about by welcoming different ways of communicating and believing sensory experiences that are different to those of your own. It will come from adjustments to how society does things, so that more people can take part.

I am waiting to find out why my life expectancy is reduced. It seems ironic that after years of battling suicidal thoughts, I am now being handed death on a plate. I am certain that the mislabelling of my own mental health and the consequent medication has played a major part in my incurable physical health condition. But I cannot escape the trauma (both sensory and event based) I have experienced – the body most certainly does keep the score. The effects of toxic stress on my developing body and mind must have played a part too. The invalidation and gaslighting and self-doubt kept me unwell and unable to seek support. My muted interoception meant I did not always know I was in pain or what it was I was feeling – and my heightened tactile sense system meant I responded completely proportionally to excruciatingly painful light touch, but to others who experienced things differently I was interpreted as over-reacting – both these experiences adding to the inaccessibility of support. Even the design of hospitals and surgeries, and the sensory overload that comes with all that white brightness, and noise makes them inaccessible. When I do step inside, my overwhelm can reduce my ability to tap into the flexible thinking, reasoning and organising I require to navigate the communication requirements of finding the right place, at the right time and telling the right person, the right stuff about me!

This is a sad blog to be writing. Sad for me, yes. Sad for the autistic community. If we were any other marginalised group in society, would our reduced life expectancy be kept so quiet? What if gay people were thought to have had a long life if they made it to 55? Surely society would be doing something these days, even though they may not have in the past. How about if it wasn’t a marginalised group? What if it was white men, like the ones who dominate the research and the institutions involved in researching autism? I am certain there would be uproar and demands to change things. Reaching 60 years old should not be almost unheard of for any group of people, anywhere in the world in this day and age.

This is a complex topic with lots going on. It needs further research that listens to and values the input of autistic people from all walks of life. But I do not think we will find answers by looking inside the bodies and minds of those autistic people to find out what is supposedly “wrong” with them, so we can make them “better”. We need to look more widely and be disgusted and offended and outraged that any group of people is expected to have utterly appalling mental and physical health outcomes that reduce their lives to a fraction of what they should have been.

If you like the photo of the Oak tree please read this blog about aging and usefulness.

The Mighty Oak

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Sensory Trauma and Proactive Regulation

https://www.differentbrains.org/sensory-trauma-and-proactive-regulation/

A blog for US non-profit Different Brains

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My changing perceptions of challenging behaviour….

https://neuroclastic.com/my-changing-perceptions-of-challenging-behaviour-reflections-of-a-social-care-professional/

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Autism and Christmas

Sending you all my best wishes…here is a blog I authored for NeuroClastic

Autism and Christmas
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5 minute read Autism Coronavirus interoception Uncategorized

An Autistic experience of the impact of Covid-19 infection on sensory processing

Background:

I contracted Covid-19 for the first time in April 2020. This required a hospital visit which led to my interest in developing resources to support other Autistic people and their families as part of my professional work as a director of Autism Wellbeing CIC.

I received my two doses of the Covid vaccine during the summer of 2021 and was unfortunate to become infected with Covid-19 for a second time in October 2021. My symptoms of early illness did not present in the expected way.

My most recent Covid-19 infection initially resulted in the common symptom of complete loss of my sense of taste and smell. I have regained about 5% of my olfactory and gustatory processing ability six weeks on from infection.

My professional career has been within social care – developing and delivering services to people who are labelled as having complex needs. My own experience of Covid-19 enabled me to reflect upon some of the potential impacts this could have on other Autistic people, and in particular those who use non-verbal communication or are considered to have “challenging behaviour”.

Interoception – knowing I am ill:

Prior to both infections with Covid-19 I noticed a complete change in my demeanour. I did not feel ill. I did not feel hot or cold – although a thermometer indicated I had a fever. I experienced the sudden onset of severe depression-like symptoms. Fortunately, I am aware of how my interoceptive processing experiences manifest. Interoception is the sense we use to process internal body signals such as pain, hunger, or needing the toilet – and to notice our emotions and the changes they are creating in our bodies (racing heart could mean excitement or anger for instance).

The severity of the depression-like symptoms frequently overshadows my attempts to seek medical help for my physical illness. When I seek medical intervention at these times, my physical illness is typically overlooked, and my mental health is scrutinised – despite me articulately and accurately informing medics that I believe I am coming down with a physical illness. This overshadowing of my physical illness due to putting greater emphasis on the risk management or identification of my depression-like symptoms may prolong my illness as my physical health problems are not treated.  It invalidates my experiences and may even create barriers to me seeking support or communicating with medics.

When I consider people I have supported professionally, that are labelled as having “challenging behaviour”, I recognise occasions where perhaps they too may have experienced a sudden change in mood due to a physical illness. Within my work I have observed people exhibiting behaviours such as shouting; biting themselves or others; or running away. These behaviours were considered to be caused by the person trying to communicate that something was wrong and as practitioners we would consider whether this could be something external such as too much noise or the person not wanting an activity to end, for example; or something internal such as toothache or illness.

At times, “challenging behaviour” was interpreted by some practitioners as having an element of intent or wilfulness on the part of the Autistic person. It was sometimes considered that the person didn’t know how to communicate “properly” using speech or sign language or had poor social skills – and therefore chose to demonstrate their pain/distress/urge to leave, by “acting out” and using their behaviour in a planned or possibly even manipulative way to communicate with others.

Where no cause or trigger was obvious to the (usually non-autistic) observer, it was common for the observer to conclude that the person was over-reacting or hyper-responding in some way, and subsequently needed to learn more appropriate coping strategies. My own symptoms of sudden severe depression could look like emotional instability to an observer, and they may well consider me unable to cope with being ill. They may misconstrue that my mood symptoms are a response to my physical illness and not the way that illness manifests for me.

Sensory Processing:

Thank you to my colleague Kate for the drawings http://www.autismwellbeing.org.uk

Sensory processing is the process by which the nervous system receives, organises, and understands sensory information. All of us experience the world through our senses and our brains process this information.

Autistic people frequently process sensory information differently to non-autistic people. Our sense receptors (eyes, ears, taste buds and so on) may work perfectly well but there may be differences in the way our brain processes the sensory information.  This may include struggling to process too much sensory information or filter out unnecessary information; experiencing heightened, muted, or distorted sensory signals; delays in processing; or perception in one or more senses shutting down, resulting in an incomplete picture of what is happening within the body.

Each of us has a unique sensory profile. But sensory processing does not happen in isolation. Our sensory experiences change and can appear inconsistent to others who do not recognise the dynamic and context specific nature of sensory processing.

Our senses play an essential role in keeping us safe. For example, if food smells rancid, we know not to eat it, and if we feel unstable on a structure, we climb down from it. Sensory information tells us how to act in and adapt to the environment. Sensory processing also plays a role in regulation, activating us to evade a threat or calming us so that we feel safe.

Positive and negative aspects of my loss of taste and smell:

  • My overall amount of sensory processing was dramatically reduced. This had a calming and regulating effect upon me and reduced distress in some situations. e.g. the lack of diesel fumes and burger van smells made visits to my local town more bearable.
  • Food never tasted “off”. This reduced the anxiety I typically experience when food tastes different to usual. I used the best before date to identify whether something was safe to eat.
  • Food tasted of nothing – so texture became more intense. I realised that I could never eat broccoli without the “reward” of the taste of it to compensate for the texture!
  • I have practiced mindfulness for decades and found that eating mindfully was the best way to cope with my sudden loss of taste. I would put the food on my tongue and notice it without judgment. At first, the only food I could identify in my mouth was mango, due to the distinctive fizz. I am now aware of spices, bitterness, and the saltiness of marmite.
  • I recognised how I rely on my sense of smell when cooking. It lets me know when to check if the toast needs turning over under the grill and if food is getting close to being cooked. Without the ability to smell my food cooking, I had to focus on following safe cooking procedures and use a timer or else risk burning food.
  • Smell keeps you safe – I no longer felt disgust at cleaning up pet poo, even if I accidentally got some on me! I didn’t automatically recoil from mess or take extra care using bleach or filling the car with petrol as there was no aroma from it and it could have been water as far as I was concerned.
  • I can no longer smell the weather and therefore cannot easily identify whether I should wear a jumper or coat. My sense of smell is more effective than my awareness of temperature when processing the environment.
  • I use my sense of smell to recognise people. Their sudden lack of aroma made them as difficult to recognise as a radical new haircut or significant weight change would. This created a sense of unease within me.
  • I am concerned that I may smell bad, or my home may smell bad.
  • I am aware that I would not smell burning so have become extra vigilant about checking things are switched off at night. I recognise that this vigilance could become anxiety, perseveration, and obsession, so I have adopted a sensible routine to manage my safety concerns without escalating them.

Conclusions:

My sensory experiences following Covid-19 infection have reminded me how our senses work together and not individually.

The role of our senses in keeping us safe is significant. Risk taking may not always be due to recklessness, impulsivity, or lack of understanding of risks – it could occur due to sensory differences.

Autistic people may experience the world in a disorganised or chaotic way because our senses work so differently. My typical need for routine and structure reflects this. Since Covid-19 infection, I am aware that I am relying even more than usual on timers, reminders, and routines in order to compensate for my loss of certain senses. To an observer, Covid-19 may appear to have made me “more” Autistic. It hasn’t; but my “normal for me” world has changed, and I am needing to find security, certainty, and predictability in this new world of minimal smell and taste.

If I was supporting an Autistic person who was not able to articulate their experiences, and they had recently tested positive for Covid-19, I would consider how their sensory processing may have been affected. It would not surprise me if some Autistic people needed to increasingly rely on their other senses to make sense of the world if their sense of smell and taste reduced. They may touch things more to identify them using their tactile sense. They may stim more in order to get extra vestibular and proprioceptive input. I’d expect to see more tasting and smelling of items and people; and possibly increased frustration at not being able to recognise them by these methods.

I would also expect to see an increase in repetitive questioning by some Autistic people. I too have a felt a need to check and recheck information in order to seek out familiarity and predictability. I have found satisfaction in the predictable to-and-fro of scripted or familiar conversations and exchanges. Those reliable quotes from films and songs that stay the same each time you hear them! Similarly, I would not be surprised to see people stuck in a loop of thinking, or stimming, or behaving in a particular way – these tendencies are often exacerbated by change and unpredictability and can provide predictability and a self-soothing function.

Moving forwards, I have prepared myself for a potential return of my sense of taste and smell. I am aware that just like the effects of the various lockdowns ending; a sudden increase of sensory information may be too much for my brain to process and result in survival responses of fight, flight or freeze. I plan to stick with my mindful approach to noticing what my senses are picking up, with no judgment and a curiosity that will hopefully enable me to reflect and share my insights.

I encourage practitioners to consider sensory processing experiences when supporting Autistic people whose behaviour suddenly changes from what is usual for them, and perhaps check whether Covid-19 infection and symptoms related to loss of smell and taste may be the cause.

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Sensory Trauma interview

It was wonderful to spend some time with Chloe discussing Sensory Trauma. Why not catch our interview on YouTube

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Autistic Body Language

Here is a blog I wrote that NeuroClastic recently published.

There is a fantastic breadth of autistic experience available on the Internet. Neuroclastic.com is a great source of insights. Why not check their website out, and have a read of my latest blog while you are there.

https://neuroclastic.com/2021/01/06/autistic-body-language/

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A Brief Christmas Message…

https://m.facebook.com/story.php?story_fbid=2802739203305969&id=1509838305929405&sfnsn=scwshmo

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Autism education Uncategorized Video Vlog

Autism and School

You can watch me in my first ever vlog by viewing the YouTube link below, or if you’d prefer a traditional written blog, you can read that instead.

I have decided to go to University. Now then, if Miss Hooper, my very first teacher in primary school heard that news, she might be quite shocked that I am saying this at the ripe old age of 47.

 On more than one occasion over the past few decades,  I have affectionately cursed Miss Hooper for setting such high expectations for me. Within days of me starting school she informed my parents that I was potential Oxbridge material. A child with my natural academic ability was clearly cut out for one of the top Universities in the land.

It didn’t happen. I didn’t even get close…

So what went wrong?

Well…

For a long time I assumed “I” went wrong; my teachers assumed I went wrong; my parents assumed I went wrong. But I didn’t go wrong. The education system simply did not respond to my needs. And this was because of my undiagnosed autism.

Mind you, I can’t think of a single child at school who was diagnosed with autism. This was the 1970’s and no one had yet described the spectrum of autism nor the triad of impairments. And we were still years away from Asperger syndrome being used as a diagnosis.

Right, let’s get back to my school days.

So it’s the New Year of 1978 -I had been to playschool for a year or so and was quite looking forward to joining the big school.

I was already able to read and write – and I already had a bit of a reputation, as I was not backward in informing my playschool leaders when they misspelt my surname. And I was most offended – and I told them – when their response was that a 3 year old shouldn’t be able to spell their surname anyway! You can probably guess how well I was going to fit in with the education system from this moment on.

So here I was about to go to school. I was looking forward to it. I wanted to do some proper work! Miss Hooper, my class teacher, seemed very old to me – I suppose she was almost at retirement age back then – in fact she died earlier this year at the grand old age of 100.

She could be described as an old-fashioned sort of teacher. Strict; slightly distant; very academic and serious. Not at all like the playschool leaders who would happily get involved hands on with the children and cuddle them and play with them and fuss over them.

It was bloody brilliant!

Miss Hooper gave me extra reading lessons and I was allowed to choose books from the junior children’s library, even though I had only just started in the infants. I was even allowed to stay in at lunchtime and do more reading instead of joining the other children outside to play. I very much fitted in with this school system and I was happy to be spending my time there, stretching my brain.

I’d like to point out at this point that autism is a spectrum. That doesn’t mean some people are mildly autistic and some are severely autistic. And it doesn’t have anything to do with academic ability either. Autism is a spectrum because whilst all autistic people share similar ways of processing the world; this manifests in different ways. I was academically bright – yet took a very long time to learn how to tie my shoelaces. I could talk with ease about one of my interests – maths or animals for instance. But I struggled to know what to say to make friends.

For me, it is these contradictions that are the very essence of my autism. The huge expectation from others – and myself – that because I can do this thing very well, I should be able to most other things very well too. I remember a phrase used repeatedly about me as a child. “How can someone who is so clever, be so stupid?” This very negative phrase has taken a lot of shifting from my internal dialogue, probably because I felt it summed me up so perfectly.

I got hold of some old pictures I drew in my first school year and some of my classwork too. I can remember the sheer joy of finishing my work and asking for some extra sums to keep me busy while I waited for the rest of the class to catch up. I remember exactly how I used to think aged 4 when I drew these pictures – I was exactly the same then as I am now.  So it’s nice to look back and remember that I was actually quite a sweet, fairly ordinary little girl too.

Have a look at my vlog (about 4 and a half minutes in) if you’d like to see more of them.

I am begining to see how I was starting to look to the other children. I mean – a 4 year old who asked for extra maths – for fun! Yep, my differences were beginning to show…  

But no one suspected that this socially awkward, pedantic child with a massive obsession about numbers and animals was autistic. I was lucky in a way because my academic brightness and extremely polite “good” behaviour, masked some of my difficulties. My quirks – as they were probably perceived – were tolerated because I was bright and well behaved.

I was told I was clever – I knew I was clever. I was probably a total pain in the backside because my need for accuracy, order and consistency, combined with my academic ability meant that I would correct people whenever I felt it was needed and not really take into consideration anyone else’s feelings or opinions. However, I was – and still am, a polite person, and very considerate. I would happily correct someone because – goodness me, that’s what ‘I’ would want them to do for me. Surely, they must want me to tell them what they got wrong? And I’d tell them with no malice; no unkindness – just total honesty, straight to the point logic and reason – you know what? – they’d probably find me super helpful. Wouldn’t they?

 Of course – this different way of experiencing empathy and interacting with others was not the typical way of my peers.

Let’s skip on a few years to secondary school.

Secondary school was bigger. More people, separate lessons, different classrooms, and a timetable to negotiate.

Things started relatively ok.

But over the course of my 5 years at secondary school, things deteriorated. I’ll share some genuine extracts from my school reports…

Year 1: This is from the Head of Year: “Emma has shown herself to be a pupil of the highest quality… She is enthusiastic and often terribly energetic and excitable about what she is doing… She is clear thinking and responsible and I am sure has much to offer the school in the future… The staff reports speak for themselves. An excellent report”

Yep, there I was. A bright future ahead of me. Lets see what the individual teachers had to say..

Maths – there should be no problem there… Grade A for effort and A for achievement – great, now what did my teacher say? OK, here goes: ”Emma works extremely well in class. She is a little dogmatic in her approach to mathematics, but at least discusses with me any disagreements she has over method!”

Yeah, well. I suppose that sounds a bit like me!

The rest of that first year report was also good. A’s for everything apart from P.E.

That wasn’t a surpirse, I have the coordination of a blancmange! I can remember from primary school how my parents were told that there hadn’t been a single P.E lesson where I didn’t injure myself in some way.

Anyway, lets look at my second year at secondary school…A good performance in all subjects according to my Head of Year. Perhaps a little too talkative.

Yep – drama teacher here says “very talkative but pleasant with it”.

Mmmm. Spanish: “Emma is a lively character, perhaps a little too lively at times for her own good”

French… “Emma’s concentration in class is apt to lapse rather too much”

OK…

Science… “Emma does not seem to work to her full ability. She can occasionally behave stupidly”

Actually Mr Hughes, I don’t think you are meant to use the word “stupid” when referring to your pupils.

History next…”Disappointing…lacks depth, Emma must be wary of developing a superficial approach”

Right, so not quite the “pupil of the highest quality” from Year 1. And whilst I was still mostly getting A’s for achievement – my grades for effort were now tending to be B’s.

But, Oh how I wish they knew the sheer amount of effort I had to put in just sitting on that crowded, noisy bus whilst teenagers screeched and sprayed copious amounts of Impulse body spray around; so that I could spend a day in brightly lit classrooms, full of people who were just not like me.

By the third year I needed to be choosing my options for GCSE’s – the new exam that was replacing O levels. I was not happy about GCSE’s. There was coursework required and homework to complete – I liked tests and exams – coursework meant sustained efforts and the ability to demonstrate you really understood something and could apply it across a range of contexts. And I preferred relying on my good memory, and winging it in the exam!

“Emma must learn to pay attention” – that was from my English teacher – and this is one of my favourite quotes ever – “Her ability cannot be questioned; her attitude can!”

And there you have it – my shift from being a bright, lively engaged member of the class, to a child who is perceived as having an attitude problem.

“There is room for improvement” according to the French teacher – I still got an A though, so where I needed to improve, I’m not sure.

Around that time I also remember frequently being told that I wasn’t listening. And I would of course reply that I was and repeat what had been said word for word.

And then… wait for it, I’d be told “Well look like you’re listening then”

So I developed my “listening pose” based on Rodin’s The thinker ….. It also felt nice to do and is still a favourite soothing strategy when I need to calm myself in front of other people without drawing too much attention to it.

“Easily distracted” in Spanish

“Needs to do a great deal to redeem herself” … that’s physics

Here’s a nice one… History “Emma is a highly intelligent and articulate girl with a waspish sense of humour”

Thank you for that, I only didn’t take history as a GCSE option because I didn’t like the other history teacher – he was sexist – and I told him. He said that the girls should help their mum’s with cooking and cleaning in the holidays.

“Fussy and disorganised” …that’s the Art teacher

So I entered the last 2 years of compulsory education. I had chosen my options, which were as science based as possible. I wanted to study medicine and unfortunately I had told my parents and teachers this aged about 7, so everyone was counting on this actually happening. That initial pressure of being Oxbridge material had stuck with me.

Inside, I knew I was different. I pretended to like pop stars and boys like the other girls did, but I didn’t really. I pretended to like make-up but actually found it felt extremely unpleasant to wear. I liked animals and nature and thinking about things and being on my own.  And I was the most gullible, easiest to tease, bully or pick on child ever. And I repeatedly kept doing whatever it was that made people pick on me. And I had no idea what it was. No amount of masking my undiagnosed autism, ever really hid it. I knew I was different. Everyone else knew I was different.

But overall, academically I was doing ok- ish. My fourth year report refers to me “having ability but not quite attaining what I am capable of”

I was told I needed to be more disciplined and determined – to get things done on time – to be more consistent.

My math’s teacher was worried about my attitude; yep, so was my French teacher; my physics teacher criticised my ‘forgetfulness’; my chemistry teacher said I needed to apply myself more. The careers teacher was concerned about me being “nervous over using the telephone”

But there were some positives too.. I went to a religious school so R.E lessons were compulsory.  I opted for the GCSE called ‘Religion and Life’. It was interesting and there were plenty of philosophical discussions to be had. Mr Paul, my R.E teacher is firmly stuck in my memory. I started secondary school in 1984 – and he suggested we read the George Orwell book of the same name. he welcomed my questioning mind. Here’s what he said about me….

“Emma has so many ideas that the effect can be torrential! I am considering issuing the rest of the group with umbrellas so they can survive the deluge! Actually, Emma is invaluable as a catalyst of ideas and her learning and grasp of religious ideas is very promising.”

That was a nice thing to say about me. But I bet you can imagine how I was starting to feel confused, troubled and frightened. I was still mostly getting A grades for my achievements, but I didn’t look like I was putting enough effort in. I was distractable and inconsistent and forgetful. Some teachers thought I was great. Others thought I had an attitude problem and found me exasperating.

The background to this was of course my autism – my very different sensory processing system that found some noises so painful, it was even agreed by the school that I didn’t have to go in the woodwork or metalwork classrooms. But the impact of my autism was not just academic – yes I was dogmatic, I was distractable and so on. But I was also bullied mercilessly. I found fitting in and making friends painfully difficult. I also had some horrific life events to cope with that were secret and almost unbearably painful to cope with. My life outside of lessons was horrendous – and none of those teachers knew.

In my fifth, and final year, the teachers seemed more positive about me. Probably because I did well in my mock GCSE’s. My report comments are mixed, but so so many of them are describing a very typical autistic girl.

Listen to this positive one: “Emma has an occasional tendency to gallop off into the sunset in the pursuit of an idea that attracts her, but which is not strictly relevant. But I suspect that is just the way she is. A super student and a lovely person”

My confidence in my cleverness was diminishing and my physics teacher describes how I underestimated my own ability.

My chemistry teacher refers to me being disorganised and “not averse to stopping him mid-flow to clear up any point that has not been made clear” – I’m not sure if that was meant as a positive or a negative. Either way, it’s pretty autistic.

I was feeling relief I think that school would soon finish, and I could leave. I planned to take A levels in a College of Further Education  – a much better setting for me. The teachers tended to drop the dark sarcasm in the classroom once you got to call them by their first names, instead of Sir or Miss.

So I sat my GCSE’s. I did well. I went off to take science A-levels – but as the college staff reported, I did not cope well with the transition. I tried A levels a second time. But no. Education just wasn’t working for me. If you have a read of my blog about how I learn – and the difficulties this causes my teachers, then you’ll understand more about how the combination of sensory, social and teaching factors just don’t work for me at all.

How I learn….and the difficulties this causes.

So we skip forwards 30 years and I’m off to do my PhD. I’ll be a doctor – but not the medical surgeon I had planned to be. My PhD is about neurodiversity and employment.

And this is because I have been successful in my career. Being a catalyst of ideas is useful. Being nervous of using the telephone is still problematic, but where my skills are valued, colleagues are often – but not always, happy to make accommodations. My differences can be an asset. I have an appreciation of the world being a far more complex place than I did as a child. I still call people out when I need to – I’d still tell that history teacher he was being sexist. But I’d be more diplomatic with my maths teacher, and I certainly wouldn’t tell him he was “wrong” just because his way of working out a maths problem was different to mine.

I got hold of these old reports when I went to see my family in early September. I didn’t even know they were still in existence. I wondered if my autism would be apparent when I read them. Judge for yourself.

I struggled my way through school, without knowing why. Surely a bright, talkative girl would be successful? But she wasn’t. Well not in the way school expected anyway.

Usually in life, I have been most successful when I have played to my strengths, and other people have played to my strengths.

I’d like teachers to think about the bigger picture when they are writing or thinking about pupil’s “stupid behaviour” or “attitude problems”. Neurodiversity could be behind it. Especially when you view the bigger picture and see the pupil’s strengths as well as the issues. These characteristics often create a picture of someone who experiences the world differently – and that can bring innovation as well as challenges.

Teachers also don’t always know what goes on outside of the classroom either, and the impact of these things on a child too.

School age Emma was academically bright, full of ideas, disorganised, forgetful, distracted. She had a tendency to go off on a tangent, to question and to say what she thought. She was – and still has, nervousness around using the telephone. Still accident prone when it comes to doing P.E. Still can’t even be in the room with certain noises, smells or lighting. At times still socially awkward.

Unfortunately, school put me off learning. Put me off making friends. And put me off myself, if truth be known.

My son is home educated. He had a fantastic primary school experience but once we saw that some secondary school teachers still used the same old sarcasm, still viewed difficulties with writing, copying from the blackboard or having the correct equipment at the correct time as “behaviour issues”, I decided to educate him myself. And we are both thriving because of it.

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sensory trauma Uncategorized

Dear Doctor… a letter about my body

Dear Doctor, Dentist, Hairdresser, Kindly Neighbour reaching out to touch me during conversation…

I may like you, I may not. It doesn’t matter. This is MY body. I do not have to give you access to it.

Please do not presume you can touch me – whatever your motives or profession.

I may ask you to touch me, I may ask you stop. Please respond with respect.

If I react by pulling away, asking you to stop, or acting in any way distressed then stop immediately.

Do NOT ask if I’m OK. I’m clearly not and it is not for me to justify why, it is my choice. Instead consider what you can do to make this easier for me.

Ask me if you can touch me or tell me what you are going to do.

Give me time to process that and wait for me to agree before touching me.

Do not tell me you will be quick; it will soon be over; or it doesn’t hurt. Do not keep going when I say stop. These actions are disrespectful at best and abusive at worst.

Maybe I don’t like being touched by other people because of how my sensory processing system works – many autistic people don’t. Maybe it’s because it triggers memories stored deep inside my body – of abuse, pain and trauma. Maybe I just don’t like it. Maybe one day it is OK and one day it isn’t. That is none of your business. I don’t need to “get over it” so that you can touch me. I don’t have to dissociate so that you can touch me. I don’t have to put up with it so you can touch me. You just need to take my lead because it is my body.

If you are reaching out physically to connect with me emotionally and I don’t reciprocate, then thank you for wanting to connect with me. Please don’t take the reaction of my body pulling away as rejection. Please find a different way of connecting with me that works for us both.

I do not need to give a reason for not wanting to be touched – however, please consider that every person you meet has an inner life that you may know little about. Autism, sensory processing disorder, PTSD, trauma, abuse. Or perhaps they just don’t want to be touched – that’s fine too.

Make no assumptions about how I wish to be touched. There is no hierarchy of body parts that you can have freer access to than others. It is all me and it is all my body. You don’t know how I process the sensation, and you don’t know how I perceive your touch. If I feel violated, frightened or under threat, your motives are irrelevant – telling me you won’t hurt me is irrelevant. Showing me you won’t hurt me by stopping IS relevant.

It is 2020 – this should not need to be said.