This is a short but apt article, especially as I lost my phone earlier this week, focusing on the recurring theme of autistic adults and their hatred of phone conversations. Of course, I could have written about my less than optimal “executive functioning” abilities leading to the loss of the aforementioned communication device, but I’ll leave that for another day. In a study by Sedgewick and Howard 2021, the general consensus was that among our community the phone was considered ‘evil’. Regardless of whether we are phoning out or receiving a call, the phone is commonly thought of by autistic people as a terrible way to communicate.
So why is it, that this symbol of modern communication is so despised by us? One word that seems to appear consistently around the idea of phone calls is anxiety. Participants in this paper stated difficulties with deciphering social context, finding it challenging to interpret the caller’s tone or intonation. From personal experience this is hard enough when someone is standing in front of me, let alone when I am speaking on the phone. Without facial expressions or body language to give me a fighting chance, often I am left guessing with regards to any nuance that may be hidden beyond the actual words.
Furthermore, many of us like to incorporate routines and some predictability into our lives, so receiving a phone call, especially whilst in the midst of concentrating on something else can be particularly unnerving. There is of course a major drawback to this phone allergy, that being, the vast majority of jobs include telephone calls at some time or another. It’s difficult, if not impossible to escape (not through a lack of trying on my part) that at some point you will have to talk on the phone. For me, receiving phone calls is on the whole worse than making them. Surprises that start with an annoying ringtone, followed by someone blathering on, while I attempt to understand what they are trying to convey, at the same time placing it into some form of social context is not my favourite way to spend the day.
At least if I am going to make a phone call, I can rehearse what I want to say and pace it accordingly. Often, I will even use a script to keep me on track, however, this can fall over into a big snotty heap if the person decides to veer off piste, or asks questions I hadn’t prepared for. Regularly, this results in a period of elongated silence, followed by querying what they just said, in order to buy myself sometime to figure out what they are actually talking about. What is also mildly to moderately irritating is when somebody else answers the phone, then says “oh it’s for you”, without any warning, preparation or even a clue as to who it is. This mainly occurs at work, so in fairness, it wouldn’t be hugely professional for me to hang up on them, as tempting as this option may appear.
So what form of communication do autistic people actually prefer, I hear you ask. Well according to several studies, it turns out we like the written form, texts, emails, snail mail, online messaging, it really doesn’t matter, as long it’s not the damn phone. There are several explanations thought to be behind this, one of which is thinking time. On the whole autistic people are planners, we like to gather and organise our thoughts for maximum clarity and effect. The written form is inherently slower, providing time for us to process the information and present an appropriate response thus reducing the possibility of anxiety or simply being misunderstood.
Another reason to gravitate to this mode of communication is, structure, using the written word, autistics are given time to research or to find the optimal response, which may even extend to ‘borrowing’ phrases. This is something I have definitely done over the years, frequently stealing phrases from people who I considered role models, even from the TV or books. I’ve utilised this for both face to face communication and during times on the phone. Over the years, I’ve collected phrases that seem to have had the best effect (by others). All the while, intently observing and studying social interactions, in order to pass as a ‘normie’. These are what I call my ‘presets’, but over a period of time (50 years) they are now more ingrained, fluid and practiced, therefore, fooling many people I meet into thinking I am a neurotypical. This can be used as an example of camouflaging, deployed in an effort to fit in with society, but alas, it comes at a cost to ones mental health.
A further issue, common with autistic folk is a multitude of sensory issues associated with conversing with another on the phone. Many of us will have problems blocking out background noise, making it increasingly difficult to figure out what is being uttered, exacerbating any existing anxiety. Beyond auditory issues, from personal experience I can be distracted by just about anything, but generally it manifests visually. However, a combination of sounds, movements and even temperature can easily overwhelm my senses, making it difficult to focus on the conservation, resulting in asking the caller to repeat the sentence. One further issue that applies more so on the phone, is knowing when to speak. It would seem that I spend most conversations speaking over someone, as I fail to work out when it is my turn to talk.
So, how do we get around this aversion to phones for many autistic adults. Well, personally I would prefer it if people didn’t phone me at all. Maybe, leave an answer phone message, or a text, possibly an email, how about write me a letter that I’ll receive in a decade or so, or scribe to me on an ornate scroll with your finest quill. Whatever method you choose, just please please please don’t use the bloody phone.
I’d be interested to know what methods of communication any autistic folk out there love and hate, in the comments. Does the current research regarding phone calls fit with your experiences, or do you love a good chin wag on the “dog and bone”. Anyway thanks for reading everyone.
A large body of evidence strongly suggests the prevalence of suicide ideation within the autistic community is significantly higher than that of the general population. In 2014, research noted that within a population of 374 autistic adults, 31% self reported depression, 66% disclosed suicidal ideation, while a staggering 35% recounted plans and attempts of suicide. Further to this, a 2018 review went on to suggest 72% of autistic people experienced suicidal ideation over a lifetime.
Undoubtedly, one of the potential causes of suicidal ideation is depression. In their 2016 book “Exploring Depression and Beating the Blues”, psychologists Tony Attwood & Michelle Garnett highlighted a number of reasons why people on spectrum become depressed, including:
Feelings of isolation and loneliness
Feeling rejected and not respected by peers
Finding socialising mentally exhausting
Internalising and believing peer criticism
Focusing on errors and what could go wrong
Possessing an aversion to change or believing it is unattainable
Being unable to cope with specific sensory experiences
Being diagnosed with Autistic Spectrum Condition
Having a family history of depression
Clearly, there must be more to it than just depression, especially when acknowledging the considerable disparity between reports of depression (31%) and feelings of suicide (66%). One plausible conclusion is something called alexithymia. This term encapsulates variations an individual may have regarding the processing of emotions, in particular relating to identifying and describing emotions within the self. Here’s a list of obstacles that people with alexithymia may encounter.
Distinguishing between feelings and bodily sensations
Describing emotions to others
Identifying facial expressions
Identifying or remembering faces
Developing a thinking style using inner experiences (often thinking styles for those with alexithymia are based on external events)
Although, not all will experience each one of these, many of those with alexithymia will witness a number of these challenges to varying degrees. So why is this important regarding suicide? The simple answer is, it is estimated that between 40-65% of autistic people have alexithymia and the gap between reports of depression and suicide ideation is largely thought to be due to alexithymia and not autism per se. It is widely considered that this condition initially develops as a defence mechanism to protect oneself against highly emotional events and presents in 2 broad flavours.
Cognitive alexithymia – relating to the difficulties with identifying, analysing and verbalising emotions
Affective alexithymia – corresponds to the disparities with imagination and emotional arousal.
It’s proposed that cognitive alexithymia is more common among people with autism, but experiencing both types is not unusual. It is postulated that the condition can develop in 3 different ways.
Primary – thought to be caused by genetics and family relations, in particular childhood trauma or negative interaction with the primary caregiver.
Secondary – resulting from psychological stress, chronic disease or organic processes such as brain trauma.
Organic – a sub category of secondary caused by trauma, vascular or other brain damage.
If we return to suicidality, several primary drivers have been unearthed when relating these thoughts to autism. First of which is loneliness, conversely, social support is deemed as a protective factor against this. However, as autistic people tend to have less social supports on average than neurotypicals this can exacerbate feelings of loneliness. One extra layer to add is, alexithymia itself is deemed to contribute towards loneliness. Meaning, the greater the severity of alexithymia, the less social interactions a person is likely to have. Areas such as; intimacy, sociability, submissiveness, assertiveness, responsibility and controlling behaviours are all negatively affected by this condition, thus compounding social isolation.
Without doubt, anxiety is a huge issue among the autistic community with 63% reporting a lifetime history. It is, therefore, reasonably common for people with autism to become overwhelmed by the pressures of life or the amount of hurdles that need to be overcome, giving rise to anxiety and drastic coping mechanisms. Additionally, autistic folk may be stuck in distressing, depressive and suicidal thought patterns. This can be due to rigid behaviours, a lack of cognitive flexibility and the feeling that a particular disturbing state will never end, thereby, allowing thoughts of more permanent solutions to these temporary problems to flourish.
Another term frequently used in the autistic community and contributory factor is camouflaging. This can be described as the process of concealing one’s authentic identity in order to fit in with society and is used extensively particularly by autistic females. Camouflaging can broadly split this into 3 sub-types.
Compensation – employed in difficult social situations, such as, copying body language, facial expression and social cues.
Masking – used to hide autistic characteristics or to present as non-autistic.
Assimilation – adopted with a view to fit in with others in social settings. This can be done by putting on a act, avoiding or forcing social encounters.
A major problem with camouflaging is that it can be mentally and physically exhausting. Individuals report that it can evoke further stress and anxiety after the event. Autistic people who camouflage also highlight increased symptoms of depression and ultimately convey feeling less accepted by others. Although camouflaging appears to have detrimental effects on our mental health, it is usually felt necessary because the consequences of not doing so are thought to be, social exclusion and rejection.
It is worthy to note that all of the above factors are common in autistic people, each one contributing to an increased susceptibility of suicidal ideation and possibly suicide itself.
How does this fit with my experiences?
I was diagnosed with autism at the age of 50, however, I have had suicide ideation since the age of roughly 13. To complicate matters further, since going on this recent diagnostic journey, I am also fairly certain I have alexithymia. In fact, I completed a recent test regarding alexithymia and scored 159 out of 185, strongly indicating I may have the condition. In contrast, my wife who I would offer is in touch with her and the emotions of others, while also being good at reading people scored 54/185. In effect, Bev acted as a control group, allowing me put my results into perspective. If you are keen to have a go, press on the link. Be aware, this is not a diagnostic tool, but may provide some direction regarding this condition.
In addition to this, I also have been diagnosed with anxiety based depression and double depression during varying periods of my life, another key component when considering suicidal thoughts. I suspect it would be difficult to ascertain if the depression runs concurrently with ASC (autistic spectrum condition) or if it is simply because of it. Either way, I think it’s safe to say I have a relatively strong element of depression in some form or another.
Furthermore, during the assessment process with regards to the autism diagnosis, I scored very high on the Camouflaging Autistic Traits Questionnaire (CAT-Q). The report stated that all aspects; compensation, masking and assimilation were being practiced to an “exceptional extent”. As mentioned earlier, camouflaging can have deleterious effects on the mental health of a person, thus adding further complexity when trying to unravel the reasons for my long term suicidal thoughts.
Having had these unhelpful thoughts for about 4 decades, I have given the possible mechanisms some thought and think I have 3 distinct suicidal thought processes. The first one relative to the other two is reasonably benign. When situations aren’t going well (on a milder level) or I have too much time to think (often at night) or it appears there are too many things going on at the same time, I quite often think “stuff it, I’ll just kill myself”. It’s much more habitual in nature and probably offers some form of a ‘get out clause’ when things seem difficult. Autism expert Tony Attwood offers, that “when autistic people get anxious they push the panic button and when they get depressed they press the suicide button”. I think my ‘chronic’ suicidal ideation mode is a reasonable example of this.
My second mode related to suicidal thoughts, is linked to an area that has been looked at by multiple professionals and researchers, often described as a “depression attack”. The ‘attack’ is usually short lived lasting no more than an hour, it feels exceptionally intense and is predominantly brought on by stress. For me, this could mean a change of routine, particularly if it is unexpected, maybe new things that are suddenly forced upon me, perhaps an environment that is busy or loud, but generally it’s a combination of multiple factors. When the stress builds, I cease to function logically, at which point like many people with Autism there’s primarily two ways to go, either into a meltdown or a shutdown. All of which can occur very quickly and can be perplexing for those around us, plus frightening for the person involved.
Whichever path is taken, at this juncture we are neither rational or reasonable. Personally, I am more likely to shutdown, which is an apt description of how it feels. My thoughts seem like they are out of control, then all of a sudden my mind seizes up and basic functions or thought processes suddenly appear impossible. For those 30-60 minutes, conversation with me is futile, therefore, I can’t explain what is occurring to anyone. During this period my mind has been overstimulated and I need to put the brakes on quick, so I shutdown. Dependent on where this occurs, it can be incredibly embarrassing, for me often leading to thoughts of suicide, due to feelings of shame and guilt. The only way out of this, at the acute stage is to remove myself from the stressors immediately.
My final process leading to suicidal ideation builds up over a much longer period of time and is strongly linked to the causes mentioned earlier:
Arguably, this is most dangerous of the 3 modes of suicidal ideation and has been the path that has led to my 2 previous attempts at suicide. This particular process is generally proceeded by a long period of depression, which can progress towards more concrete thoughts regarding killing myself and mental rehearsals of the plan. Due to the length of build up, it should in theory, be the easiest to pick up on, thus providing a suitable intervention from either people who are close or mental health professionals. However, because Autistic people are not good at explaining emotions, it often gets misinterpreted as something less serious than it really is.
Personally, I tend to intellectualise the situation, thus obscuring the ‘red flags’ which would often be recognised by therapists. It’s fairly obvious that signs were clearly missed by health professionals regarding my last attempt while in Auckland, most probably due the unique presentation of suicidal tendencies that emanate from those who are autistic. Manifestations of suicidal intent among those with ASC appear different in my estimation from neurotypicals and thus urgently requires further research in order to curtail future catastrophic outcomes for autistic people.
Just to be clear, in no way have I written this article to shock or scare people regarding suicide and autism. On the contrary, I want to provide some factual information alongside my personal experiences, in order to offer people further insight in this area. If others who are autistic feel they can relate to any of the content in some way, or it gives loved ones an ‘insiders’ perspective, or simply provides a greater understanding, it will have been more than worth the time spent writing it. Thanks for reading.
When we left Manchester the temperature was -7 celsius on route to the airport, but here we sat, outside of Whangarei Airport at a little after 10am and it was already pushing 28 degrees. We were hot, disoriented and thousands of miles away from the place we still referred to as home. We may have left the cold, icy weather behind, but my GP in the UK would be proved correct, my ‘problems’ were not going to simply disappear. However, now I was on the other side of the world, without many of the protective systems that I had cultivated throughout the years. Luckily for me, Bev would be ever present, as many of my demons would return to haunt me with a vengeance.
We had been accepted to live in New Zealand on a residents visa prior to arriving, on the back of Bev’s job. But with no work for myself, this allowed me way too much time to think, rarely a good thing. After roughly 10 months of looking for work, I found employment at the Accident Compensation Corporation’s (ACC) local branch. For the uninitiated, this is a crown entity providing people within New Zealand financial compensation and support for those who have suffered personal injuries. I was employed as a case administrator, but it became apparent early on that this job was largely unsuitable for me and my mind.
Firstly, it was office work, not the optimal place for me to flourish. The job also consisted of numerous phone calls, both inbound and outgoing calls. As somebody who hates talking on the phone at the best of times, this was somewhat of an issue. Rarely do I answer my own calls, unless I know exactly who it is and preferably what the conversation will entail. Furthermore, the corporation was obsessed with mind numbing meetings, where I attempted (but failed) to look semi interested. Staring at a screen, interminable meetings and talking on the phone made up about 90% of the working week. Sprinkle in, some corporate team building or personal development training and I was ready to jump off the nearest metaphorical bridge, albeit with very few options in Whangarei.
It was probably no shock to anyone who knew me, in even the most fleeting sense, that after one whole year I was looking for the exit door or even an ejector seat. In fairness, ACC served its purpose, providing much needed money, even funding a short break to Aussie. But it was becoming patently obvious that it was time to find something more fulfilling. Although, what I did next still ranks as one of the most perplexing life choices I have ever made. Using my previous qualification in podiatry I secured a place on a pharmacy degree course in Auckland. This was full-time and would whisk me away from my primary support system, that being Bev. At the time, however, we really didn’t think this would be an insurmountable obstacle. So in early 2013 I shipped out to Auckland to begin a phase of my life that would prove to be the darkest period thus far.
At around about this time, our house that we had recently bought, while heeding all the advice regarding building checks and balances was found to be leaky. A combination of moving to Auckland and what would be a long running saga regarding our porous home, no doubt put untold stress on my wife, which we’ll return to in due course. But for now, I was a 42 year old man, with no chemistry background whatsoever who was about to embark on a pharmacy degree. Observing this with the luxury of hindsight, this was inevitably doomed to fail, and it did, spectacularly.
On arrival, what became immediately evident was, I had very little in common with the majority of people on the course. Although, without doubt there were a few people who appeared as chinks of light within this period of darkness. In sum, I was a working class, middle aged bloke, who spent nearly a decade in the navy, who to a large extent had discovered life and already had a myriad of strong, largely cynical opinions about it. So whenever I felt the odd urge to partake in activities, such as touch rugby or karaoke, which incidentally expended a years supply of social energy, I was left with an even greater feeling of solitude. If ever there was an example highlighting the disparities between being on your own and being alone, this would be exhibit A.
On many occasions, I found myself caught between two stools, one bunch often looked at me as if I was old enough to occupy my own casket (students), while the lecturers were guilty of treating me like a child who was incapable of wiping my own arse. This whole episode was destined to end badly and true to form it did. Using my x-ray autistic specs to reflect on this, things now make more sense. My routine prior to the course had been decimated, admittedly by choice, but I had no idea the damage this would cause. Living conditions were far too ‘peopley’ for this weirdo. Cooking facilities were in communal spaces and TV rooms were inhabited by boisterous students, who were compelled to investigate the concept of independence for the first time.
Further to this, my choice of friends in a desperate attempt to connect with people proved more detrimental to my health than the endless days of loneliness. Since then, I have now identified that as part of my autism I do not possess a psychopath detector, generally taking individuals purely on face value. This ensures I can be ripe for the picking for any narcissist or sociopath who gains joy from destroying another person’s life. Months of life as an older student led to, severe depression, anxiety, self harm, suicidal ideation and an eventual suicide attempt. During these times my phone was practically on speed dial to every mental health helpline I could find and yet nothing really alleviated how I felt.
Merely existing was proving increasingly difficult, while my attendance at lectures and labs were becoming a distinctly rare occurrence. Many times, I would be banging my head on the wall of my room for extended periods, which gave me some strange form of relief. I ate less and less, losing about 10kg’s, while barely sleeping most nights. To compound matters, the university counseling services were next to useless. Not helped by the fact I couldn’t explain what was going on and they didn’t seem equipped to deal with complex matters that were over 4 decades in the making. Eventually, I was referred to the crisis team in Auckland for the majority of the 2nd year. Care simply centered around checking if I was still alive, with the team contacting me in the morning by phone, followed by a physical visit in the evening.
As my mental health deteriorated, I was checked into a respite house in the suburbs. Here, I had no responsibilities, food was prepared, medication was kept safe by the staff, there was a spare guitar to play, a dog to stroke, plus bedrooms were spacious, I scored it 4.5/5 on Trivago…….not really. During this bleak time my wife arrived from Whangarei, at which point I was allowed to leave the house. We would walk for miles and just talk, trying to make sense of our strange predicament. Spending a week in respite certainly provided some restorative properties, but this wasn’t to last. Nothing deep seated had ultimately changed and with Bev back up north, I declined into further despair.
My thoughts were starting to become darker, plans of suicide more concrete and rehearsed in my mind. It was a close run thing between hanging myself and getting run over by a train. This was a particularly bizarre decision, especially if you know anything about trains in Auckland. Firstly they’re electric, and crucially, they are not very fast. Undeterred by the lack of a high speed rail network, I calculated where the fastest point would be for the train to travel. For this, I looked at the distance between stations, straight sections of track and a lack of signals.
Needless to say, I was in a dark place when I chose to ‘execute’ (no pun intended) my locomotive inspired plan. In Auckland there is a large park called the Domain, the idea was to traverse across this to get to my destination. Parnell is known as a rather posh area of Auckland, but on this occasion it was chosen for the distance between stations, not the cafe scene. Before I left, I hastily wrote an incoherent suicide note almost out of the perceived expectations of others and began to trudge across the park. I distinctly recall feeling emotionally exhausted, with a myriad of incomprehensible thoughts washing over me. I remember purposely ignoring a phone call from the crisis centre, for a date with destiny, or more accurately, an electric light rail vehicle traveling from the suburbs of Auckland at a less than convincing top speed.
By this time, unsurprisingly my cognitive reasoning was less than optimal, I was depleted of energy, I’d also lost my bearings in the park, worse still (at the time), I couldn’t locate the train tracks. I was psychologically drained, confused and physically tired and subsequently fell asleep under a tree. I returned to the flat exhausted, to find members of the crisis team awaiting me. They offered that the best course of action would be to admit me under the mental health act. Finding all this too much to comprehend, I went along with their advice. After going through the necessary questions and procedures, I suddenly found myself in the mental health wing of Auckland Hospital, bewildered, lost, alone and utterly bereft of energy.
On accessing my room, the first job was to reinstall a ripped down curtain rail, especially if I had any intention of getting some sleep. Initially I found the hospital a scary environment, I didn’t know any of staff or clients nor the layout. Suddenly life seemed extremely unpredictable. I needed to develop a routine that provided a feeling of security and safety quickly. On my very first night, there was a fight between residents but luckily this was speedily resolved. Furthermore, in the morning, while making my way to the shower I had to watch my step, as faeces had been smeared all the way down the corridor by some disgruntled camper. My new temporary abode was going to require some adjusting to, but first impressions weren’t favourable 1.5/5 stars.
Unsurprisingly, privileges were given on a trust basis, as I was new I had none. This meant I couldn’t leave the facility initially at all, with or without supervision. As a matter of survival, I rarely spoke to anyone for the first 2 or 3 days, apart from when the nurses approached me. Implementing a routine and even a modicum of control in some way felt hugely important. This began by discovering the ‘library’ which was a quiet corner of the ward and an old classical guitar to play. At least now I had something that would pass a few hours alongside reading. Later in the week I found a lady on another ward who provided a very decent game of table tennis. We never actually spoke to each other throughout our hours of playing, but we both appreciated the benefits of good low serve and a topspin smash.
After a painfully long week I was released, Bev picked me up, we met a good friend who had been brilliantly supportive throughout this trying time and I had the first decent meal in days. Following my escape from Alcatraz, I ceased studying for the rest of the year and headed back north to Whangarei, mentally bruised but still alive. By this point our leaky home had become akin to a demolition site, with buckets strewn everywhere, plus missing bits of wall and ceiling throughout the house. Adding to my list of poor decisions, in my wisdom I decided to go back to finish my studying. What did that famous fella Einstein say about insanity? Suffice to say things never got any better, although this time I didn’t attempt suicide. Which was a win.
Over this same period, my wife understandably became exceptionally stressed having to live with the holey house on a daily basis, while also trying to support me with my regular trials and tribulations. One day at work Bev shockingly suffered a heart attack, with stress and crap genetics most probably being the main contributory factors. To this day it still rightly irks her, as she hardly drinks, never smoked and has always made an effort to keep healthy. Following this terrible event, Bev was consequently rushed to Auckland hospital for surgery, across the road from the very university where I was studying pharmacy.
Her surgery largely went well, but not without complications. However, it quickly became apparent that I needed and wanted to leave Auckland for good. While Bev was recovering, it was obvious that I had to rethink my future, this is when I came up with the idea of nursing. This was partly inspired by the nursing care Bev received in Auckland Hospital, additionally, it was something I could study locally, while using credits from the pharmacy course in order to make life easier once enrolled. Northtec provided many things that were immediately more favourable compared to Auckland. Smaller class sizes, easier accessibility to lecturers, no condescending staff members and it was exceptionally near to where I lived.
The college may not have had the storied reputation of the University of Auckland, but personally I found it a largely positive experience. Students were on the whole friendlier, staff were helpful, plus the campus was small and manageable. Despite this improved learning environment, most of my previous issues still lingered. Academically I found it relatively plain sailing, however, practical components of the course and group work were as difficult as ever. It was during these difficult times that I started to think maybe it was more than depression and anxiety that persisted in making life so challenging.
Exams and solo presentations were perfectly fine, as I was in control of how I wanted to study or present the material. In stark contrast, working in groups was horrendous. The noise levels, people speaking over each over, the random distribution of work, group members going off on tangents, plus the reliance on other group members to do the work, then present it accurately was all quite stressful. Further to this the methods of delivery were often not what I would gravitate towards, with a lot of groups using ‘skits’ to convey the required information. In no way is this a criticism of the people on the course, rather it further highlighted the differences between me and most people.
Later on, I found ways to navigate these ‘challenging’ moments. Generally, it consisted of agreeing to do much of the behind the scenes information gathering and reporting back to the group once completed. These times were chiefly spent in the library where it was quiet and conducive to learning. One of my biggest issues is I am very easily distracted, this could be due to noise, the temperature of the room, comfort of a chair, the irritation of my clothes or even vibrations on for example an adjoining desk. On the flip side, if conditions are optimal I can hyper-focus, resulting in the production of large volumes of work in a short period of time. This is probably the nearest I’ll ever get to a super power, but it can come in handy at times.
Towards the end of the course I started to seriously consider the possibility of being autistic. Firstly, I did an Autism Quotient test, designed by Professor Simon Baron Cohen. Although this is not a diagnostic tool, it is considered useful for people who are investigating the prospect of being on the spectrum. It was somewhat of a surprise to find I’d scored 43/50, suggesting I was highly likely to be on the spectrum. This early exploration into autism led to further tests, all of which seemed to point to the same conclusion. It was around this time when Bev revealed that she had been thinking that I may have been autistic for years and that when we first met, she couldn’t work out by my facial expressions if I even liked her.
So after reading the DSM V regarding the diagnostic criteria, plus other books and journals on the subject, I decided to see if I was actually autistic. It would appear it was so obvious to the psychologist that she was left musing why it had never been picked up previously. Which brings us full circle to the beginning of part one. So, following the diagnosis, my hope is that it will help to make sense of many difficulties I’ve encountered over the years, thus allowing me to implement suitable strategies so I can live a more fruitful life both at home and at work. It’s still early days, but so far I will say that my acknowledgment of autism somehow allows me to be more compassionate towards myself (most of the time). All I want is to be is the best husband, nurse and human being I can, hopefully, this period of self discovery will help me achieve such a modest request.
In the next blog I will discuss depression and suicide ideation in relation to autism, both from a research and personal perspective, in an attempt to bring these issues to the forefront of people’s minds.
Featured photograph – Whale Bay, Northland, New Zealand.
On reflection it is difficult to summarise my time in the navy. One thing is for certain, it could have been much worse. I often pondered why I wasn’t more depressed than I was, during those 8 years. After all, it was yet another environment I never felt entirely comfortable with. I certainly wasn’t part of the party culture, in fact I didn’t drink until I was about 23. Also, weapon engineering soon lost its appeal, thus I was spectacularly stagnant, making no discerning effort to move up the ranks over this time. Further to this, I intensely hated the military bullshit, while despising pointless traditions that these organisations throughout the world revel in. Yet, there I remained for nearly a decade.
Although, if I observe this from the perspective of autism, things start to make a little more sense. Firstly, there was a distinct routine, which was printed and sent down to each mess, called “Daily Orders”. I didn’t have to think about making food, commuting to work or working out what I needed to. It was made explicitly clear to me what was expected each day. Although this may sound like hell to some, this made my life much easier to navigate. Even main leave periods were set out in advance, meaning I could plan to a large degree what I wanted to do ahead of time. Personally, choice can be less important than knowing what is on the horizon. As I absolutely despise surprises.
Despite not fully understanding the dominant culture in the navy and the many people who subscribed to it, I did meet lots of excellent people over the years. Some of which were major positive influences during this period and throughout my life. Although a recurring theme, my friends consisted primarily of weirdos, outsiders and oddballs, in no particular order. One such gent over this time was Mick Knott, whom I met on the first day of basic training and who also joined the same ship as me following our trade training. What I learnt form Mick (probably without his awareness) is, it’s OK to be different. This was a man who had a mug with “fuck off I’m having a bad day” written on it. So when someone was annoying him, he would simply turn the mug around so they could read it.
Besides numerous excellent people, I also got to play a lot of sport all around the world, which throughout my life has been an enormous protective factor. It didn’t matter what it was, from boxing to basketball and anything in between I was happy to take part. Plus if you played for the ship, you often got the afternoon off work. Always a good motivating factor. Unlike for many, whereby the fixture was simply an excuse for a ‘piss up’, the actual game was my social and I would often disappear straight after it, before anyone would even notice.
A further factor that preserved my sanity was the chance to visit 30 countries all over the world, while enjoying some incredible experiences including; white water rafting in Brazil, skiing in Norway, visiting the Pyramids in Egypt and getting stuck at night in a cable car on route to the top of Sugar Loaf Mountain in Rio. But without doubt my enduring memory was accidentally knocking into Princess Anne on her visit to HMS Amazon with such force that half a dozen spanners flew out of my overalls pocket onto the deck. This incident left the princess laughing and the Captain glowering at me as I dived onto the floor in order to gather my tools. Alas, after 8 years enough was enough, taking voluntary redundancy, I walked out of the dockyard gates for one last time on 13th June 1996 to began a new chapter.
During the period between my late teens and early 20’s, relationships were difficult to say the least, ranging from volatile to emotionally draining. Most of all they were exceptionally confusing. There appeared to be certain expectations in my relationships especially when I was young, such as, grandiose and regular open displays of affection, particularly on contrived occasions like St Valentines Day. This I found deeply stress inducing, often feeling judged on my perceived exuberance and level of participation in the whole charade (or lack of). Additionally, the requirement to mind-read the ever changing needs of a partner, while attending to them promptly was excruciatingly taxing, let alone virtually impossible for me.
Unsurprisingly, for someone who has autism I found this a tricky proposition. Firstly, I generally can’t work out or even name my own emotions, let alone decipher the myriad of signals that constitute what someone else is feeling. I now know this is called Alexithymia and is pretty common among autistic people. It would have been lovely to have known about this 30 years ago, sadly I was a long way off from discovering this phenomenon. What’s more, I have the cunning ability to not be able to read peoples emotions through their facial expressions (prosopagnosia), which neurotypical folk tend to do instinctively to a large degree of accuracy.
The combination of these two traits, plus social issues, can make any foray into a relationship exceptionally treacherous, often resulting in accusations of not caring or losing interest in a partnership. Quite often I found myself on the receiving end of emotional, psychological and even physical abuse, but predominantly relationships resulted in emotional fatigue, confirming their perception that I was emotionally disengaged. However, trying to work on a hyper emotional level for someone who is on the autistic spectrum is exhausting and for me unsettling. For those reasons, I consequently abandoned the idea of a partner for the next 5 years.
From 1996 to 2000 my life was punctuated by uninspiring, demoralising jobs such as, fitting Sky Digital satellite dishes, a spotty work record, plus the ever growing feeling of loneliness and a profound disconnect with society. In contrast, 2001 saw the start of an interesting year comprising of extreme highs and lows. By this time, I had completed a personal training course, which unbeknownst to me would eventually lead to years of academia. I subsequently began work at a gym and enjoyed combining my love of keeping fit with the chance to help others achieve their goals.
It was in this environment (gym) that I met my future wife Bev, someone who was to become without a shadow of doubt the most positive influence of my entire life. Before this relationship began to flourish however, I experienced extreme periods of suicidal ideation resulting in an attempt to take my own life in mid 2001 with paracetamol. But before you start reaching for the Kleenex, it’s OK, because there’s a funny if not slightly dark story associated to it.
As I was embarking on killing myself, after 12 paracetamol into it I received a phone call. Unusually, for some weird reason I decided to answer it. On the other end a jolly voice cheerily proclaimed, “hi, I’m from Lets Get Motivated, I’m wondering if you would like to work for us”? Due to a large measure of surprise, my exact reply was, “sorry, I think you’ve got me at a bit of an inopportune moment at the moment, can I call you back at some point”? At this juncture I starting laughing at the ridiculousness of it all and stopped taking the pills. Meanwhile, the guy at the other end of the phone had no idea that on this particular day he saved a life and for that I would be eternally grateful.
Although gym work was enjoyable, the personal training course sparked a deep interest in anatomy and physiology. Utilising this new found passion, I began studying for degree in podiatry. Inevitably, this presented a variety challenges over the 3 years, one of which was anxiety, especially when doing oral exams. Being scrutinised while working on someones feet was particularly stressful. In contrast, academic aspects of the degree were comparatively easy and deeply fulfilling.
For the remaining 6 years before eloping to New Zealand, I balanced both working in the gym and part-time for the NHS as a podiatrist. Over this time I managed to squeeze in some post grad work. One being a strength and conditioning qualification, the other a post grad certificate in sport podiatry and clinical bio-mechanics. Regrettably, this period was strewn with anxiety and depression, plus what I would now term as autistic meltdowns and shutdowns, which at the time was interpreted as chronic fatigue. In the workplace this was met primarily with unsympathetic managers who simply viewed me as unreliable, thus adding to already high levels of stress, guilt, shame and further days off work.
It was around this time that Bev started questioning the legitimacy of the chronic fatigue diagnosis, as she noticed that I appeared to have more energy when partaking in my ‘special interests’. Non more obvious than when I played baseball. Baseball was a critical safety net I had weaved from 1999, while I was looking for a sport to play in the summer, after ceasing my participation in triathlon due to a back injury. Autism expert Tony Atwood, states that special interests for autistic people can be a huge restorative factor. This was especially true for me as I threw untold amounts of effort and energy into both playing and learning deeply about the game. After a few short years, I volunteered to be the manager of the Manchester A’s, this continued until I departed for Aotearoa in 2011.
Along with my long suffering baseball widow (Bev), the game and the club became part of a vital lifeline, adding to a string of social outposts I had created over the course of my life. As well as being a team manager, I also took on the responsibility of club President for approximately 4-5 years, while coaching and organising pre-season training sessions. I always got the impression that the Manchester A’s were proud of being ‘slightly different’. Some might say we were odd or quirkier than the average bear and for me that was a good thing. I would argue that the majority of us found this weird oasis of US sport in the heart of football country (Manchester) profoundly gratifying.
Clearly, a great many characters threw there heart on soul into this fantastic baseball club and still do to this day. I do not have the words to express how incredible it was to play baseball with this extraordinary bunch of ‘idiots’. In 1988, hair metal band Cinderella sang on their exceptionally minor hit, “you don’t know what you’ve got till it’s gone”. Those words were still ringing in my ears when I experienced this loss first hand after a few years in NZ. Along the way, a fellow ‘great weirdo’ who will be simply known as “10” departed the Earth. It was and still is deeply saddening that I wasn’t able to make it back to the UK to say my final goodbyes. This was the man who painstakingly explained baseball to my then future wife using salt and pepper pots during a presentation night, as I rather unhelpfully laughed uncontrollably at the bar with my compadre Jim, complete with a pint of Guinness in hand.
I can sincerely say, that without my wife having the patience and insight to recognise the importance of my time involved with the baseball club, my existence without hesitation would have been infinitely more treacherous. Baseball took up a huge period of time in the week, often most of the weekend and all of Thursday evening. Not to mention countless lengthy phone calls, organising the week ahead with fellow ‘hardball’ maniacs, Ian and a man we shall call Margy. Undeniably, this was the most intense ‘special interest’ I had ever experience and despite the roller coaster ride of emotions its presence was invaluable to my very survival.
After 9 years together Bev and I got married on the 26th March 2010 on a beach in the Cook Islands. It was a raucous affair with the 3 of us present at the ceremony (Bev’s son Tony making up the trio) seemingly uncontrollable after sharing 2 bottles of champagne (I may be autistic, but I’m partial to a bit of sarcasm). This was followed by 4 weeks in New Zealand, with the view of scouting it out as a potential future home. Easily, New Zealand had won out and after just less than a year later and an interminable immigration process and what seemed like an even longer flight, we touched down in Whangarei at a little after 10.00am on February 1st 2011.
However, before I even stepped on to the plane heading towards the southern hemisphere, I went to see my GP regarding my persistent depression and anxiety. What he said to me during our consultation was deeply irritating, but over time has proved prophetic. He candidly said, “moving to another country is not going make the problem go away”. These words, would return to haunt me with a vengeance, but for now Bev and I were simply coming to terms with living upside down on the other side of the planet.
In the 3rd and final part I will discuss the last 10 years in beautiful New Zealand, both the ups and downs.
The first thing the psychologist said to me during our interview was “why now”? While her last words were, “how was it not picked up earlier”? I simply said, I was a kid in the 70’s. These two pertinent questions book-ended the process of uncovering whether I was autistic or not. Spoiler alert, I am. However, this diagnosis has simply closed one chapter, while flooding my brain with a myriad of questions sending me on a journey, albeit belated, of self discovery.
The actor Anthony Hopkins of Hannibal Lecter fame was diagnosed in his 70’s, while conservationist and UK TV presenter Chris Packham got his diagnosis in his late 40’s. Thus proving that it is not unusual these days to discover you are autistic later on in life. So to answer the psychologist’s first question, I needed to understand why many things in life just didn’t fit for me. The world doesn’t and never has made a huge amount of sense, particularly from a social perspective. Over the years, I have been diagnosed with; depression with anxiety, double depression and chronic fatigue syndrome, yet nothing really matched precisely how I felt. Plus, I could never adequately explain how I felt to a doctor, psychiatrist, psychologist or counselor. All I could say to them was, life seems hard and I never feel in harmony with it.
From roughly the age of 26 I have seen approximately; 5 psychiatrists, 6 psychologist and over a dozen counselors. I have tried about 10 different antidepressants from the old tricyclic amitriptyline to the more modern SNRI such as Venlafaxine. I have had a go at B12 injections, acupuncture, mindfulness, cognitive behavioural therapy and acceptance commitment therapy, to name a few modalities. All of which have had varying degrees of success, but only to a point.
For me, the diagnosis of autism makes much more sense, it ties up many loose ends, while explaining why I generally feel like an alien. Only in the metaphorical sense, as I really have no comprehension how an alien might actually feel, if they indeed exist. Finally, I can view life through a lens that offers insight into some of my actions, behaviours, thoughts and dare I say feelings over the last half century. So this is the abbreviated answer to the “why now” question. The answer to “why did nobody pick this up earlier” hopefully will be addressed throughout the course of this blog.
I guess one relevant question would be, when did I notice I was a little different. Maybe there were a few hints in the early days. One story I recount is whereby my parents lost sight and consequently lost me on a beach when I was about 2 years old. The search spanned most of the day, causing my parents to call the lifeguard. Later I was found further down the beach, digging in the sand without a care in the world. I suspect this was in stark contrast to my distraught mother and father.
At ‘playschool’ (kindergarten) I recall hating playing with the other kids, especially if they were loud and playing ‘pretend games’. I often joke that “I never really liked kids when I was one” when asked if I have children. Another time, I ran off from the dining table when kids starting singing Happy Birthday at my party, but were left completing the chorus to an empty chair, as I legged it down to the bottom of the garden. The truth is, I was never happier than when I was in my own little world and things really haven’t changed too much either in that respect.
Being in my bedroom on my own was my place. I inhabited a private universe and it was a good place for me to be. Although I had some imagination as a child, my world was still very much linked to the real world, I didn’t understand the idea of fantasy. In fact, I hated reading fiction, with my books consisting of atlas’s, encyclopedias or anything that contained facts and stats. I also collected stamps and currencies from all around the world. I even tried to create my own language, complete with a unique set of letters. Suffice to say it didn’t really catch on.
Between the ages of 7-10, things were reasonably straight forward. I suspect this had a lot to do with having stable systems in place such as school and attending the local cub scout pack. Primary School was one of my happier times. I generally had teachers who encouraged my thirst for knowledge and at times celebrated it. One teacher who occasionally stood in used to indulge one of my special interests, by asking me questions on ‘capitals of the world’, for which I knew all them by the age of 9.
However, other staff members did recognise certain traits at times. When I was in what would now be known in the UK as year 4, the teacher noticed that my Monday morning diary was practically identical each week. This consisted of chronicling my footballing exploits over the weekend. The picture that accompanied it was virtually indistinguishable from the previous weeks effort, apart from the colour of the football kit, which depended on the team we were playing that weekend. Rather than investigating this, I was simply asked to do something different next week, which I did for one week, before returning to old faithful the week after.
For years 3 and 6 I had the same teacher, who I will happily proclaim as one of the most influential people in my life. His name was John Alderson. He was relatively young, sports mad and science crazy who encouraged people to explore what excited them. What wasn’t there to like? I vividly remember him tailoring the whole afternoon lessons around watching the Columbia space shuttle launch, as we all clambered into the library to view it on TV. He also persuaded me to represent the school in our general knowledge quiz team, as well as supporting me to pursue my love of numbers.
Apart from school, there were interests I pursued outside of it too, primarily cubs. To me it seemed an awesome place for kids who probably didn’t entirely mesh with the wider world. This was a place where my geeky outlook on life could flourish, but also an environment where I could socialise with other children that I actually liked. By the time I retired from the cubs at the grand old age of 10 1/2, I had an arm full of badges and was the proud sixer of red six. Without doubt, at that point in time leaving cubs was the saddest day of my life, not knowing things were about to get a lot worse very soon.
Without my trusty support network of primary school and cubs, I nevertheless, embarked on the next chapter of my life, that of high school. Despite my primary school teacher Mr Alderson’s advice to my mother that I should take the entrance exam for the local grammar school, I was alas sent to Coney Green High School, one of, if not the worst schools in the district. It was less of a place to learn and more of somewhere to fester for 5 years before you took your rightful place in the dole queue with the many other millions in the mid 80’s. But I figure it was easier for my mother to send both her kids to the same school, despite massive personality disparities.
Years of bullying led me inevitably to drop out of any academic pursuits, instead opting to focus on surviving, subsequently learning martial arts and how to box. With regards to education, in the first few years I could get by during my exams on what I learnt from primary school, as I was 2 to 3 years ahead especially in mathematics. Eventually the lack of studying and general interest took it’s toll as I slid down the groups at an alarming rate. With the headmaster once declaring I was “one of the biggest disappointments” ever to go through his school. I guess you reap what you sow.
Certainly this provided some of the backdrop to what would eventually be known as depression, however, a formal diagnosis would not be forthcoming until the age of 26. Almost immediately on starting high school I began to feel profoundly different from the other kids, I also got a strong sense that they didn’t really understand me either. I relied on a very small bunch of friends with which I had shared interests. This group consisted of 3 maybe 4 (on a good day), who also didn’t entirely blend in with the mainstream for one reason or another, but whom I trusted.
To me, most kids appeared stupid, not fun to be around and generally did things I didn’t want to do, like getting into mischief. At 13 I started to become very depressed, often feeling socially isolated in every conceivable way. During this time, most days started with the ritual of holding a knife to my stomach trying to think of a good enough reason to attend school. This dark period continued relatively uninterrupted for the remainder of high school. However, over this time I had constructed a chink of light that would persuade me to walk the mile to school for the rest of my time there.
Sea cadets probably saved my life on more than one occasion. In effect, it continued on from where cubs left off. Unfortunately, there was a 3 year hiatus between the end of cubs and the beginning of sea cadets, which I suspect had a sizeable impact on my mental health. In this constructed maritime environment I met other geeks, weirdos and outsiders of adolescent life, as we helped each other muddle through our teenage years in our own unique way. I learnt how to sail, row, shoot a rifle, sail a vessel at sea, march well (once in front of Princess Margaret) and strip an Enfield No 4 rifle down blind folded. More than this, many of us bonded outside of cadet night as we learnt to rely on each other for moral support.
A few of us had aspirations of a life in the military, often meeting up to walk and climb the hills and valleys of northern England, in any weather. It was a place to act out our dreams of making it into the armed forces. We made traps, practiced our unarmed combat skills, learned how to camouflage (not in an autistic sense), while generally allowing me to be a kid around other like minded people. It was a time where I could be authentic, without any criticism, a place to distract me from the day to day crap I was experiencing elsewhere. Incidentally, many of these lads went on to have successful careers in the Royal Marines, Royal Navy and the Army. Of course, we had our favourite wet, muddy valley we used to go to, but to us it always felt like home.
But even amidst the familiar confines of the Sea Cadets weird depressive and suicidal thoughts still permeated my brain. In particular, these would occur when it was noisy, or there were too many people talking over each other. I also realised that when people were having the most fun; BBQ’s, party’s and discos, I often felt profoundly sad, isolated and alienated, despite them being my friends. I would generally retreat to a quieter room of the cadet building just to be on my own. At the time I couldn’t really explain it, it just felt the right thing to do. Now, using my autism lens, it was possibly an early sign of a shutdown that I had interpreted as sadness.
After spending a brief forgettable year as an electrical apprentice with the local council I swiftly moved on to what I really wanted to do. On the June the 13th 1988 I joined the Royal Navy as a Weapon Engineering Mechanic. I was generally a shy 16 year old who had been desperate to join since the age of 9, or maybe I just wanted to leave home. So on that sunny morning I passed through the gates of HMS Raleigh and walked into the unknown.
In part 2, I will chronicle my time in the Navy up to the present day, focusing on key moments in relation to my eventual autism diagnosis.