We all have a bit of autism in us, don’t we? My friend, for example, has a thing about carpet tassels.’ This is an amalgam of various comments I’ve heard over the past couple of years. Though I must add that I could not have been as categorical that this is the case, that we’re all ‘a bit on the spectrum’, a few years ago.* Back then, I was a parent of a daughter who had dyscalculia and verbal reasoning impairment and a son whose behaviour was random to say the least; but he was ‘just being a boy’ who would ‘grow out of it’, as boys do, according to the collective wisdom of relatives, friends and teachers.
Now my family comprises one neurotypical (me) and three who are neurodiverse:1 my two children, who are now officially on the autistic spectrum, and my partner, their mum, who has no wish to go through the diagnostic process but who almost certainly is also on it. Therefore, the norm in our household is neurodiverse, but three unique versions of neurodiverse, as all versions are:1 plus me. This leads to some very bizarre conversations in our house, where no one is certain what anyone else is talking about. Which led to the idea of writing down my children and partner’s experience of what it’s like to live in a very different and often confusing world, and, in my case, witness how it is for those who struggle to make sense of the world, and how frustrating it can be to try and help them understand it. I’m also very grateful to some clients I have worked with during the past 12 months who have allowed me to share their experiences.
This will only be a small insight into our and their world, but one that, I hope, gives a different perspective on some of the inaccurate assumptions about the ‘standard’ presentations of those on the autistic spectrum, which are often bandied around with an air of scientific certainty. The title of this article, ‘I wish I was water, then I would never die’, comes from something my son said. He has an anxiety about dying, which can at times be almost overwhelming. On other occasions, he can be more relaxed about his own mortality, and on one such occasion he said this. So profound, and so true. Think about it.
Neurotypical assumptions
About four years ago, I phoned an organisation to enquire whether they considered my son might be autistic. I understood that they would not give a formal diagnosis over the phone, but I wanted to know if my ever-increasing belief that he might have an autistic spectrum condition (ASC) was reasonable. And so I and the very helpful lady who took my call, duly embarked on a review of how his quirky behaviour compared to the triad of impairments generally associated with ASCs: namely obsessive or repetitive behaviours, and difficulties with social communication and social interaction. The early exchanges suggested that I might be on the right track, until she anticipated, almost light heartedly, that his toys would be kept tidy and in an order that would make him apoplectic if changed, which wasn’t the case. Far from it. The flat ‘oh’ coming down the line deflated me and raised doubts in my mind. Ultimately, it was only after a change of school a few months later that, with the support of the new school, we asked CAMHS to assess our son. The telephone conversation is representative of something I’ve experienced on several occasions since: the neurotypical assumption, albeit well-meaning, that the neurodiverse will all present their so called ‘impairments’ in pretty much the same way.
My children and partner have many nuanced behaviours, which are based on the need to do things in a certain and sometimes very precise order or manner. But often, they will not understand each other’s routines and needs. Also, what does ‘tidy’ mean? It’s a somewhat subjective and abstract term and anything that’s abstract is a significant challenge to anyone with an ASC. Recently, Anne Hegerty very bravely subjected herself to the literal trials and tribulations of the I’m a Celebrity… Get Me Out of Here! TV show. She acknowledged on the programme that her home was generally messy and that she was uncertain where to start to make it tidier, which has led me to consider my own potted theory about how some of a neurodiverse individual’s behavioural and social challenges are potentially shaped by their early life experiences; what I’ve defined as ‘rules of life’.
They are only based on observations of my family. However, I do believe that in their formative years, those who are neurodiverse may try to make sense of a world that is already overwhelming and confusing by implementing to the letter the rules of life given to them by their primary caregivers. For example, our daughter was always told to remember to say please and thank you, take turns and never push in, which she applied, without fail. And which is why, in hindsight, she was always last on the train ride at the local indoor play area. Other children would push in front of her as she queued for the ride, and she would ignore our waving arms imploring her to take her place back. She must have been totally confused. But she was being a good girl and was loyal to the rules for being a good girl we’d bestowed upon her. Regarding my son’s toys, they were never in order because, in truth, they were rarely tidied up when he was young; and when they were, he was probably not involved because it was quicker not to involve him. Therefore, there was no blueprint of what ‘tidy’ meant. It was just a word he heard now and again.
Literal not lateral thinking
These are also examples of literal not lateral thinking and how language, the foundation of our social communication, can be so challenging for the neurodiverse. A few examples again may give an insight into how literal interpretations can create confusion between those who are on the spectrum and those who aren’t. A source of frustration between myself and my partner a few years ago was not hearing from her when she was going to be late home from work, which was about 25 miles away, until one day a phone call around the time she was due home, to inform me that she was going to be late. Brilliant!
In order to gauge how late she would be home, I asked whereabouts she was on the journey. She was approaching a well-known traffic island about a mile away. Initially, I thought it was a joke; a gentle retaliation for all the grief I’d given her for being late without letting me know. But my partner couldn’t see what was funny, and still doesn’t. My interpretation is that she phoned me when it was no longer possible to get home on time. Literal not lateral thinking.
Similarly, I recently asked my daughter to put some clothes together for Mum, who she was going to join later in the day for a personal training session. As we left the house, I noticed that Mum’s trainers were still on the shoe rack and mentioned this to my daughter. She replied, ‘You only asked me to get her some clothes.’ True. And another example of how literally and at times frustratingly requests can be inaccurately received.
Another example of a literal interpretation came from a client who talked of a relative who had been overly inquisitive about what was going on in his family. Another family member suggested that the next time he saw the relative, he should just ignore him. And he did. He cycled straight past him without any acknowledgement whatsoever. Amusing, with the benefit of hindsight, but such misunderstandings can have more serious consequences. The same client also told me of an occasion where something very innocuous led to a more serious disagreement because of a literal misunderstanding. The TV remote was missing and a family member accused my client, in jest, of misplacing it. Something along the lines of, ‘I know it was you, I can see it in your eyes,’ was said to him. To which my client replied, ‘No, you can’t. You’re lying.’ This accusation was in turn received as a rude and disrespectful response and the ‘bit of fun’ degenerated into an unpleasant disagreement. Life for a neurodiverse individual can be so dichotomous: fact or fiction, truth or lie.
Which brings us to the subject of lies and lying. They’re bad things, aren’t they? That’s what we tell our children; another important ‘rule of life’. But we’re all encouraged to lie by our loved ones and those in positions of authority, aren’t we?
Lies
One morning, on our way into my son’s school, the headteacher was in the middle of what one might euphemistically call a difference of opinion with another pupil. She clearly had her dander up and the apparently obvious social cues indicated that we should keep schtum and give the ongoing debate a wide berth. Not for my son. He chipped in with a reasonable, if ill advised, suggestion, to which the head boomed the response, ‘Are you answering me back, young man?’ The rhetorical nature of the question was missed by some distance, and my son truthfully responded, ‘Yes, I am.’ There was no punishment, and all ended well, as I believe the head understood the naive intent of my son’s involvement. He was simply being honest and politely answering a direct question, as both his parents and his school have encouraged him to do. Not answering would have been rude, and to answer ‘no’ would have been a blatant lie.
My son is a really bad liar, and it can be very frustrating when he obviously circumnavigates the truth. Mum and I have become concerned that if he continues to tell porkies as he grows older, it will cease to be cute and could get him into some serious trouble. But my daughter, who has great insight into what’s going on for my son (unless of course they’re disagreeing!), asked me one day if I wanted to understand why he was lying so much, and so badly. She explained that what he was doing wasn’t only fuelled by the need to hide a transgression: he may have spent way too long on his tablet and know that he’s over his allotted time, but he’ll only instinctively acknowledge that he’s a minute over because he desperately wants to make things better by finding the right answer. And ‘about a minute’ has been accepted previously, so that is the right answer, which is why he offers it as an answer every time.
Trying to find the right answer or do the right thing for those on the autistic spectrum can be very stressful. In fact, from the personal experience I’ve had of living with those for whom the next bout of stress is never far away, I’d suggest that a second triad of impairments could be added to the aforementioned threesome. And the second triad would comprise…
Anxiety, anxiety, anxiety!
My partner has described to me that living with autism is akin to finding the right answers to an exam she sits every day, and my children and clients agree that finding the right answer is always a challenge because, for everyone I know who is on the autistic spectrum, everything is possible. For example, a client told me that although his levels of anxiety were relatively low when we met, even crossing the road en route was not the relatively straightforward event most neurotypicals would encounter because everything is always possible, and even though rationally the client knew that if he followed the usual protocols of crossing the road, all would end well, there is no guarantee that the extraordinary will not happen.
On a trip to Wales back in May, my son and I were sharing a hotel room. As we were about to leave the room, I received a phone call. While on the phone, I wandered towards the open window to get some fresh air and enjoy the view. ‘Be careful, Dad,’ my son said, ‘a robber might come through the window and get you!’ I laughed and told him that it was very unlikely, for many reasons, that a burglar would attempt to enter our second floor room at that moment. But, as my son insisted, I couldn’t be 100 per cent certain, could I? And I had to concede that I couldn’t. Everything is possible, especially in a neurodiverse world. In his excellent book, Neurotribes, Steve Silberman refers to Gottfried, an autistic child, ‘…perpetually getting lost in the forest while fretting about individual trees.’ And that is what maintains the anxiety, hour after hour, day after day.
Conclusion
Whatever difficulties there are with the social communication and interaction within my family, I am blessed. And those of you who don’t live or work with individuals who are neurodiverse might reasonably suggest that all families have their own unique set of issues with communication, especially when the children enter and embrace every aspect of their teenage years. But I believe there is a critical difference. My frustrations and disappointments about days where communication within my family has faltered are essentially about my anxieties, my ‘good enough’ driver. And within a short period of time, I will get over myself and get back to my normal.
But from what I understand about living with neurodiversity, the anxiety is fuelled by a feeling of existing in a world that almost constantly, if not always, makes little or no sense. Out of the blue last year, my son said, ‘The end of another horrible day of my autistic life.’ When asked if every day was really so horrible, he replied that it nearly always was. He lives in a world he struggles to understand, and regardless of how much I try to explain the neurotypical world to him, overall, he doesn’t get it. And he wouldn’t, would he? Because I’m a neurotypical describing a neurotypical world. As much as I might say, ‘I don’t get it’, I’m generally talking about social, economic or political situations I have some innate understanding of, and an idea of how I would like my world to be. But it’s not a neurodiverse world, and that is something I will probably never understand. And neither will my children understand that statements are sometimes questions, and that when a parent with a puce face is throwing washing into a basket as it starts to rain, they actually want some help. And why should they? Because the neurotypical world very often makes no sense at all to neurotypicals; so how on earth do we explain it to the neurodiverse?
* The reason I have concluded that only someone who is neurotypical would say, ‘We’re all a bit on the spectrum’ is because the neurodiverse world is egocentric, and the theory of mind, rarely applies. Therefore, would someone with an ASC ever make such a statement?
Neville Tomlinson works in private practice as a counsellor and clinical supervisor in Telford and Shrewsbury. He is also treasurer of Forum for Counsellors and Psychotherapists, which organises CPD events in Shropshire.
References
1. Singer J. Neurodiversity: the birth of an idea. Kindle eBook; 2016.
2. Sacks O. An anthropologist on Mars. London: Picador; 2012.
3. Silberman S. Neurotribes. London: Allen & Unwin; 2016.