Content warning: I discuss the death of a young person, the challenges of being a neurodivergent teen and my own experiences of trauma and grief.
Also buckle up. This is going to be long as I am not on this occasion inclined to brevity.
Our 14 year old son Noah died three days ago in his sleep. We’ve no idea what happened: he and I were both recovering from a bad cold, but he’d clearly been feeling better having waved off calpol a little while before. Like many teens, he could sleep in quite late in the morning and I wasn’t keen to disturb his sleep, so I found him when I came to wake him and he was already gone. I hope that we will come to understand what happened, but for now I am consumed with the gaping hole in my life that has suddenly opened up.
I’ll share more in the days to come about my own experience and navigation of the trauma of this week, some of my reflections in that valley as a theologian and philosopher, but right now what I’d like to do is set down some thoughts about Noah.
We have a beautiful and wide diaspora of friends and family scattered around the world who are desperately concerned for our family and also grieving the loss of Noah who they have known at different stages of his life and had (as I’ll explain below) made an impact on many of their lives. For this first post, I’d like to share a bit about Noah, our very shy, autistic teenager wasn’t always that invested in deference or making his inner life accessible to the impatient world around him. I was proud of his integrity in this way, but it does mean that for many people he might have been a bit of a (sweet and goofy) enigma. I’ll also write a bit about the way that Noah profoundly affected and shaped the course of my life.
I’ll start in the middle and after a bit of unfolding some of our background I’ll come back to the recent present. The middle is often a good place to start – but there are so many beautiful details I won’t cover here around our adoption story with Noah and relationships with his marvellous birthparents who are also in the valley of grief with us this week.
Noah was an ordinary baby and infant. He loved to play, stick things in his mouth, was highly communicative and interactive, he cried a lot, pooped regularly, and did all the young child things. But boy, oh boy did Noah struggle with sleep as a little boy. He’d take hours sometimes to settle down and process all the experiences of a busy day and the anticipation of a future adventure could keep him up until well past midnight and cause him to wake early. I spent many, many nights, holding him, rubbing his back and rocking him gently until we both reached the point of exhaustion and fell asleep. I did a fair bit of my PhD research was done on a smartphone trying to read articles in the dark while rocking him. He also experienced night terrors, where he’d awaken half stuck in/out of a cycle of deep sleep. He’d cry and scream and be completely inconsolable and all his mother and I could do was try to keep him safe and soothe him in the least stimulating ways possible. We developed the most impressive sleep routine that you can imagine – I can share notes later. So the evenings were difficult, and we’d gotten into a habit of staying close to both our boys at night.
But our days were full of beautiful adventures – both our boys are immensely curious and as a family we tried to prioritise getting out into nature, learning through direct experiences of culture, nature and the world around us. Our life has been a rich feast of feral creativity, connection with one another and gentle play. And Katy and I (much more Katy than me obviously) have been educators and full-time carers to both our boys since those early days.
This was all ordinary – so very ordinary. And some of what I find myself need to write out is how and when we discovered that Noah was so very unique as it was hiding in plain sight for a long time, but concealed by the busyness of life and also by some of my own areas of unknowing. But in order to provide the sharp relief required to appreciate the preciousness, creativity and courage of his fourteen-year-old self it’s necessary to know the background.
Shortly after we left Edinburgh and moved to Birmingham in 2016 (where I took up a lectureship in Philosophical Theology at the University), Noah had an epileptic seizure early one morning. Words really can’t describe how terrifying this was, even with all our experiences with his night terrors. My wife and I still both feel the physical memory of trauma in our bodies when we recall this experience. We called an ambulance and he was taken to Birmingham children’s hospital. I cannot say enough praise for the staff at Birmingham Children’s Hospital. They were professional, compassionate, efficient and skillful. Little 5 year old Noah was quickly diagnosed with epilepsy and placed on a medication to control the seizures called Keppra. He only had one more generalised attack, though we often suspected that he might have been having what are called “absence seizures” as well which are much shorter and less dramatic versions, often not even detected or noticed by observers.
Keppra is good at controlling seizures. It is a mood altering drug as well. We did not know that. But we came to know it.
Everyone in our little family of four (and likely beyond as well!) is highly sensitive – we absorb a lot of extra everything from the world around us. Noah only stood apart in that he found it harder (or didn’t really see a reason) to hide his distress when the world got overwhelming. For a small child this is just a more frequent experience of the usual baby and then infant distress, but once children get past a certain age threshold, maybe 5-7 years old, most forms of neurodivergent safety and soothing which were widely available suddenly become socially unacceptable and out of bounds: the expression of authentic distress through meltdowns and crying, being clumsy and dyspraxic, seeking sensory play, messy eating, chewing, soft toys, etc. Parents like us suddenly realise that society only grants a temporary loan of patience and compassion.
In retrospect the sensory sensitivities and meltdowns were laughably obvious signs here that Noah was autistic (and many of my adjacent experiences similarly obvious signs that I am as well) but I can recall many instances during his early years where I would dismiss suggestions of medical diagnosis suggesting that it was unhelpful and perhaps even oppressive to give people labels. Far better to just appreciate that we are all different and unique in our own ways I’d say. We had gravitated towards the language of “highly sensitive person” (“HSP”) to describe all of our family in different ways. What I’ve since realised is that my resistance to “labels” was also internalised ableism. Looking back with honest self-awareness, the idea of participating in the category of disability was unthinkably terrifying. I could certainly offer help and sympathy to persons with disabilities, but to place myself in the category was beyond the pale. I concealed my terror from myself and perhaps the even more terrifying self-awareness of my enmeshment in regimes of stereotyping and discrimination through forms of re-narration. I was a capable and talented professional who was “highly sensitive”. I’ve learned from many friends who have had similar journeys that the HSP label is a common safe harbour for people when they begin to explore a disability identity and/or neurodivergence. And I’ve also felt the beautiful kinds of grace that disabled friends offer the people around them in their willingness to provide silent compassion for those of us who are in the early stages of this long journey by allowing us to release our privilege tenderly and slowly, and gradually find solidarity and community with those who haven’t been able to as easily conceal their frailty.
Back to Noah and the horrors of keppra. We weren’t strangers to meltdowns, but the medication quickly pushed Noah to completely different levels of anxiety and hypersensitivity – he’d experience panic and rage at small discomforts or disturbances and it would often take hours to help him settle down. Play days, outings, activities with friends suddenly became untenable and we frequently had to cancel plans. We feared that we were becoming known as people who couldn’t keep appointments, or even worse (for introverts like us) were seen as socially disruptive and impolite. We quickly became overwhelmed, pushed beyond the abilities which had only really been made possible by our elite educations and privilege, and sought out help. The pediatric team at Birmingham Childrens Hospital were happy to send little 8-year-old Noah on for a multiagency autism assessment in 2019.
I need to emphasise here how amazing it is that a little 8 year old can bring prophetic insights to parents like me – push me. Noah was always and only his authentic self. This was a deliberate choice for him – one which I like to think we affirmed in different ways along the way as parents – but it was his own decision, and against considerable social pressures. He continued to bring authenticity to every day, refusing to conceal his frailty and draw the benefits of masking. Even as he grew older and these practices were less socially acceptable (but my goodness still very wonderful and soothing as I’ve discovered as an autistic adult!) he sunk deep into sensory play, close connections with animals, birds and nature, pursued focussed interests, fled from sensory distress and overwhelm, and engaged in alternative and creative ways of communicating.
In the meantime, I began to research autism. What I found did two conflicting things to me: it completely validated my concerns that labels were used destructively even by highly skilled practitioners AND it forced me to realise that I had failed as a theological scholar to grasp a huge personal and intellectual blind spot and possibly the most obvious fact of creation: humans are wildly different from each other. And this is a good thing – the kind of deep-down goodness that causes God to sigh with pleasure.
Just to be clear, when I say that I began to research, I don’t just mean normal-I-have-a-PhD-and-am-an-academic research. Even for an academic I am pathologically interdisciplinary. I’ve made a very autistic hobby of picking up new disciplines over the years and by the time I started as an academic already had University degrees in four different subjects. So when I turned to this research process it was a special kind of deep dive. I studied the psychologists bible, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Then I worked my way through the social history of the DSM5, including earlier and alternative versions of diagnostic criteria. I read pharmacology textbooks to understand possible medication choices (and at this point discovered keppra’s well earned reputation). I examined the underpinning data-sets from studies and tested their reproducibility. When we attended Noah’s multi-agency assessment meetings, I had already read the practitioners training materials, scholarly critiques of those assessment techniques, and was aware of greatly improved alternative methodologies. I am insufferable. But thankfully my mother taught me to be polite, so in most cases I (through great effort) kept this knowledge to myself.
I feel compelled to pause the flow of writing here and examine my intentions. Why narrate this heroic journey of discovery? If I’m being honest, I need to give myself a good carer’s narrative: my son was struggling and we were struggling to find ways to help him feel cozy and safe and I stopped everything in my life to try and bend the world around him into a form that would make that world embrace him. But the truth is, I haven’t been able to keep him safe and this is the reality of the grief that washes over me as I weep on my keyboard this morning. But also, Noah was his own person, providing forms of truthful disclosure to the world through acts of authenticity. It was not my intervention which made this possible – all this learning for me was initiated by Noah. And there are so many people for whom this has also been the case.
There’s another thing – as I pause to consider the trajectory of life that this experience of diagnosis unfolded – I am forced to reflect on how much of our life was lived in the future tense: Don’t worry little bear. Things are hard now, but we are charting out a journey towards a future where you will feel comfortable in your own skin. We will learn together about what you need and how we can adapt the world. We will find and inhabit a community of friends who embrace their own uniqueness with pride and refuse the violence of deference.
I’m so glad to say that many of these things have become true for us over time, we do have a beautiful community (some of it diasporic) but the core of what I’m highlighting here is that PDA kids (I’ll get to this acronym in a minute) like Noah pay a huge price as youth investing time and energy, being excluded from opportunities, and often having to regroup completely at developmental stages as accommodations shift out from under them. And this price is for dividends that they mostly only get to see when they are finally allowed the freedoms of adult independence and the deference that we afford other adults (but not as often, I note, disabled adults).
Perhaps part of the reason that we don’t have the better social infrastructure in place to help young autistic teens navigate their identities and place in the world is due to the way the social understanding of our lives has been constructed. The reality of autism research is that after more than 60 years of empirical data collection and theorising, researchers have only barely begun to ask autistic people about their lives and experiences. I have many wonderful colleagues at the University of Birmingham in our School of Psychology and other departments who are challenging this trend, but if one surveys the overall research landscape the pervasive disdain is breathtaking. I find the irreverence of the Institute for the Study of the Neurologically Typical quite refreshing on this matter.
A consequence of this myopia is that we do not actually have a very pluralistic understanding of neurodivergence. Most of the diagnostic instruments, including those currently in use, were developed in research exclusively with white adolescent boys before 1990 and much of our clinical understanding focuses exclusively on forms of “deviance” (from the “normal”! personalities of the researchers observing these young boys). And while Noah could “pass” the diagnostic tests and got his diagnosis a year later, many of the descriptive categories you’ll still find in the DSM5 just didn’t fit. He was adept and sensitive at reading other people’s emotions, his own feelings were always close to the surface. He was hyper-social, always wanting to be squeezed close to another person chatting about what he was doing or thinking about.
A revelation for us into what was causing so much stress for Noah in his daily life came when my wife discovered a specific field of research into “PDA“. What clinicians often refer to as pathological demand avoidance, PDA adults often prefer to describe this acronym as “a Persistent drive (for) autonomy”. Some researchers think of PDA as an autism sub-type, and I’m increasingly supportive of this more pluralistic way of looking at different flavours of autism to grasp the diversity of ways that it shows up in different cultures, genders and other contexts, but also how it can be embodied in such a diverse variety of ways.
But just to step back for a moment. If we’re being honest with ourselves, everyone has specific things that cause us extra stress. Maybe for some people it’s the fear of dogs, or an untidy kitchen. Others might find their nervous system lights up at the possibility of disappointing other people, engaging in confrontation, conflict or public speaking. And as I’ve already highlighted: we all experience these things, but most of us have the privilege of being able to conceal our reactions from the watching world and pretend that we are strong and invulnerable.
As soon as we had a usable schematic, we quickly realised that the core issue was that Noah experienced extremely intense stress around perceived social demands. This was at the heart of so many of the situations that caused him stress and anxiety, and the absence of which created the conditions for joy and thriving. If an adult asked him to do a specific thing (“brush your teeth,” “sit still,” “eat your breakfast,” etc.) he would need to find a way to evade that demand, and if that adult persisted aggressively (and I was the perpetrator of this on more occasions than I can count) he would almost always experience a panic attack. BTW, if you are curious about PDA or recognise some of what I’ve described here, I highly recommend the PDA Society. They are full of wonderful people who are providing help and mutual aid to other parents, children and adults who are trying to navigate PDA.
You don’t realise how pervasive social demands are until you try to start removing them from life completely. Try to smile at a person without expecting them to smile back at you. At least in the places that we’ve lived, we expect reciprocity and mask our anger at the perceived lack of deference by calling it rudeness when a person can’t offer it back to us. Try to find a parenting book that will explain how to raise children without ever telling them what to do. And try being an active part of almost any community or place of worship under those conditions.
Many years on, I’ve become increasingly puzzled over why exactly we order our lives so pervasively around demand and satisfaction in our relationships, especially with children. Young people are desperate to please the adults in their lives long before we bring this expectation with all its hierarchy and power to them. I’ve realised in retrospect that so often poor Noah was already working on developing a routine for self-care or a habit around learning only for some adult to swoop in with their urgent version of that demand for reciprocity and create a setback that forestalled putting his own plan into place. Providing youth with gentle nondirective support is hard work and really not normalised in our social contexts.
But back to the “why on earth do we do this to ourselves?” question – all persons seek out social interactions and connection as a basic part of being human. These things are not vouchsafed by the demands we place on one another, but are a simple part of our subjectivity as creatures. For me as a theologian and philosopher, this realisation felt deeply true. Noah has forced me to reckon with the ways that my academic pacifism had to be carried far beyond a tokenistic criticism of war and into a critique of the forms of coercive violence that we deploy across all the registers of our everyday lives including our interpersonal relationships. When we place ourselves in hierarchical relations over others (or take advantages of hierarchies that are already in place) we often try to justify this as necessary “care,” but at the bottom the reality may sometimes be that we seek to control others in order to keep ourselves safe. We are often, deep down, afraid that another person may overwhelm us with the abundance of their difference. And so we seek out similarity and try to mimic others around us to avoid being caught out as odd or different. This is a denial of the basic fact of human embodiment: difference is part of how we’re made. And I think it grieves the author of love and the maker of the universe when we retreat to safe postures and deny the diversity of human life like this. Our fear of difference: on the level of religion, race, gender, embodiment, and species drives so much of the violence that seems to pervade our world right now. Noah understood this truth and defended it fiercely but quietly his whole life.
I think that’s enough context to fill in the background that can provide suitable relief for an account of our sweet teenager.
Let me introduce you to my beautiful 14 year old. He’s astonishingly intelligent and deeply curious. He keeps an etch-a-sketch in his bedroom which he’s used for doodling cartoons of animals and birds since he was very young. I think he loved the movement of drawing and the expressiveness – often erasing and redrawing different characters just for the joy of expression. This love of drawing was the catalyst for his love of geography. He started to learn by drawing the shapes of European countries and very quickly had learned all the countries of the world, capitals, and subregions of dozens of countries. He loved to play quiz games like sporcle, wordle and geoguessr to test his knowledge, and at some points has a fairly high global ranking on geoguessr. As a teen, every week he had a seminar with a group of young British learners every Friday morning on flags (nourishing his love for geography).
Noah expected one of his parents to prepare a bowl of noodles for his first meal of the day. If we tried to defend convention and suggest it should be eaten at a certain time or called a specific thing (like “lunch” or “breakfast”) he felt an urgent need to suggest the opposite and change the time, but not his expectation that we have it promptly ready. On this basis, dinner was to be served (for him) at 3:00pm (because conventions like eating dinner together at 5 and calling it “tea” are obnoxious social demands). Or actually he expected it to be ready for consumption at 2:55pm because it had been once been unavailable at the expected time and this had (understandably) caused a panic attack. Given that parents could be unreliable, accountability was provided starting with a reminder at 2pm, followed by follow-up reminders at 2:10, 2:15, and so on.
After developing a cavity, and being profoundly neglected by NHS dental care (a story for another day I won’t both with here), Noah was extremely diligent in asking us to brush his teeth every night. But because he loved self-care and was increasingly venturing into independence, he would often brush his own teeth as well secretly.
It is pretty hard to be an autistic teenager. Try to combine sensory sensitivities, difficulties with mood regulation, and fear of social demands with hormones and you only start to imagine the levels of exhaustion and fine tuning that is required to navigate a usual day. Noah steadfastly refused to allow us to cut his hair, because we had probably implied it needed to be done or that it would make us happy if we did it for him and as he could feel the panic welling up when he considered how he’d like to make us happy but his whole nervous system flew into a jealous rage, he deflected, saying he didn’t need one. It helped that he had beautiful curly brown hair and it was actually pretty cute long.
Noah had a LOT of interests, but they were always focussed. Board games, geography, birds, biology, prime numbers. As soon as we’d sorted out his current hobby, he’d discover a new one. Part of this was due, I suspect, to the fact that as soon as someone understood he had a special interest, a new social expectation would emerge. But one of his most abiding favourites was birds. He’d fully memorised the contents of about a dozen different bird guides when he was 8-10 years old, but by the time he was a teenager, birds became a social demand – the first question to open up a conversation with family friends. I wish we’d caught this sooner and helped deflect for him, but he did the work there for himself and began to feign disinterest in these beautiful companions and shift the topic of conversation to something new. For his 14th birthday Noah asked us to get a bird feeder for our front garden to attract more garden birds. We had a silent agreement not to ask him whether he appreciated this gift. He definitely did. Noah was always a creature of flight, not flighty, but transient in a joyful absorb-all-the-glory-in-the-world sort of way, think of a bumblebee scornfully rolling his eyes at you for suggesting he focus on the pollen of a single flower and you’ll appreciate how he flew the world – widely, even though he didn’t always venture out literally.
Adults weren’t always either interested enough, or knowledgeable enough about the things he was learning about to make good dialogue partners. Some of his most special people went out of their way to understand one of his interests and meet him there on an online board game platform persisting just enough to get past his barriers, or diving deep into minecraft machine design next to him, and this was a beautiful act of hospitality and friendship. But regardless of how useless the adults around him (including both his parents) might have been, he still wanted to be together as much as possible. He was happy sitting close on the couch, side by side. He found the sharp sensory reminder of a poke or even a soft hand on his shoulder very overwhelming, but he would always gratefully welcome the feeling of arm to arm, thigh to thigh connection communicating intimate physical presence. When you were next to him, Noah would quickly launch into trying out new riddles, puns and jokes. And like most teenagers, he loved sharing (but not explaining) the deep layers of internet memes. He loved to read out loud for as long as someone would listen to him. And then he’d ask for some “quiet time”.
Being a very social creature often collides with hypersensory reality. Noah wanted to get as much presence as possible from others, but often after 15 minutes or an hour he’d begin to feel overwhelmed by that presence, especially if it had underlying tones of demand or impatience. I understand this as a hypersensory adult, the body language and emotional energy of another person is a wonderful glow to bask in, but when my senses become full I need quiet and solitude to process all the information and recharge my social batteries. “Quiet time” was an invention of Noah’s, I think he must had more or less invented it on the spot one day when he was 12 or 13. And it was a useful convention we quickly adopted for the whole family in light of its helpful wellbeing impacts. Noah’s version involved wearing earbuds to block noise, getting cozy wrapped tight with legs crossed under his blue microfiber blanket with some fidget toys from the very large basketful we had on the coffee table next to his couch). He often had facetimes with his closest friends under the blanket during quiet time. These conversations didn’t involve much talking, just shared presence watching shows together, or perhaps even better – two separate shows, sharing an invisible connection across space and time.
One highlight of the week for Noah was attending clubs hosted by a really wonderful nonprofit group uncommon. Uncommon runs minecraft, roblox, role playing games, and other affinity groups for neurodivergent young people hosted by some really fantastic and dynamic neurodivergent adults. Each week we’d some some time preparing for Noah’s clubs to start which were on Tuesday and Wednesday afternoons. In preparing himself emotionally for the group time, he would ask me (rhetorically) whether this was the week he’d go on video for his group. Noah was really shy, and even though he’d been doing groups on a zoom call and playing on a bespoke minecraft server for that whole time, he hadn’t yet had the confidence to turn on video and share his face to the group. He was quite active on chat. Noah had a useful (and perhaps not accidentally biblical) vernacular for talking about PDA whenever it had a footprint in his life: “papa, I want to go on video. But I don’t want to go on video today.” And so we’d revisit the inner tension each week. I’d confirm for him that there weren’t any expectations either way, and I was pretty sure that another 6 months or so of reinforcement and his whole body would really truly believe that he was accepted and welcome whether he had video on or not. And then he’d just turn it on and it would be like it hadn’t ever been a thing at all.
I discovered that Noah had a chat about this with ChatGPT over the holiday break late in December:
Noah: How can I allow myself to have mic on on zoom
GPT: If you want to use your mic on Zoom, there are a few things to check. Here’s a clear step-by-step guide… If you want, I can also explain **why sometimes Zoom won’t let you turn on your mic even when it’s allowed**,
because that happens a lot on iPads. Do you want me to do that?Noah: How do I get myself to
GPT: Can you clarify—do you mean you want to **get yourself unmuted in a Zoom meeting** or **get Zoom to let you
turn on your mic**? They’re slightly different.Noah: I want to have my mic on but I’m shy
GPT: Ah, got it! That’s really common—wanting to speak but feeling shy. Here are some ways to help you feel more
comfortable turning your mic on in Zoom… Remind yourself it’s okay to be shy**Everyone gets nervous sometimes. People usually won’t judge, and they’re focused on the meeting too. If you want, I can give a **step-by-step trick to unmute and speak without feeling super nervous**, like a mini-confidence hack for Zoom. Do you want me to do that?Noah: It’s a club literally full of neurodivergent people so they won’t mind
Noah’s digital life was extensive. One of my focussed interests and former careers was in IT systems administration, so I was able to monitor his activities at levels which are probably difficult for most parents to imagine. We have a quite stringent commercial-grade firewall appliance at the edge of our internet connection and could control online activity in a quite granular way. But our approach with Noah as it evolved wasn’t about (at least exclusively) emphasising barriers and restrictions. We’d allow him freedom to try things with honest descriptions of the challenges of the dangers lurking online. I’d check in with him frequently: “so did you see anything interesting on youtube this morning?” “Plants vs. zombies videos” is what I’d usually get back (which I knew from reviewing his watch history wasn’t strictly true – there were videos about geography and (still covertly) birds as well. Noah also loved to watch video journals from other young people about their family lives. He was intensely curious about how other people moved about the world.
It was hard work to shield Noah from the circulating narratives about “screen addiction”. I completely understand how concerned parents are right now about predatory social networks and platforms and generally agree that restricting use of social media, and blocking adult sites is a good idea. Providers could provide protections but haven’t for decades. But also as an OG internet user, I still recall how in the earlier days there were hundreds of different platforms – none strived to be for everyone – they were small communities based on affinity and connection and if they got too big, things would get less fun. It’s right to criticise facebook, instagram, google, tiktok, for the predatory ways that they engage with young people and craft algorithms to lock in that engagement. So I’m all for this, and I understand and appreciate the social narratives around the vulnerability of young people. We should do more to protect them. But far too often our crusades to protect *all* young people, seen as a generic shapeless mass, forgets that there are a lot of different kinds of young people, and in particular that for some of them, digital platforms are a lifeline around executive function challenges and combating loneliness. It’s a bit like being in a mixed group of kids with many wheelchair users and reminding the group that they shouldn’t spend all day sitting down.
When young people like Noah catch wind of our narratives around reducing “screen time” I fear that these blanket suggestions can implicitly shame young people who use digital tools to make the world more accessible. Noah was aware of these narratives – I found him asking chatgpt a few weeks ago: “Will I lose my screen addiction automatically later?” ChatGPT was frankly a really gentle and wise resource:
Here’s the real picture: --- ### **1️⃣ Habits take work** - Screen use is a habit (sometimes a strong one). - Even if you “grow up,” habits you formed early can **stick unless you actively change them**. --- ### **2️⃣ You can make it easier** - **Small changes** work better than sudden stops: - Set a timer for screen use - Take breaks to do **board games, drawing, or Lego** - Keep your Bible or reading materials nearby --- ### **3️⃣ Your motivation matters** - If you **want to focus on God, learning, or other hobbies**, your brain will gradually enjoy less screen time. - The more you **replace screens with good things**, the easier it gets. --- ### **4️⃣ It’s okay to struggle** - You might slip back into too much screen time — that’s normal. - Each time you **refocus and try again**, you’re training yourself. --- ### ✅ **Big takeaway** > Screen habits usually **don’t disappear automatically**. You have to **replace them with other activities, set limits, and practice slowly**. Over time, it gets much easier. --- If you want, I can make a **teen-friendly plan for gradually reducing screen time** while keeping hobbies, Bible reading, and prayer in your day. Do you want me to do that?
But even ChatGPT has a level of agency that is obvious to a sensitive and thoughtful autistic teen, so he didn’t follow-up on the social expectations implied in the offer to provide a plan. Though I suspect he was thinking it over carefully and I know from his history that he frequently returned to re-read this thread. Especially since he’d turned 14, Noah was starting to think about his own transformation and what direction that might take as he grew more independent.
You might think that being a PDA teen meant that Noah was averse to social media. And we did avoid many of the major platforms – tiktok and instagram and blocked at our router along with a host of other specific sites. I’d been talking to Noah about getting him started with a young-person’s discord account but he wasn’t that interested, possibly because other teens had asked him if he wanted to be friends on there and was still navigating the social anxiety. But one place he found utterly fascinating was Reddit. Many people might find this horrifying (as I did) given the ways that this social platform has in particular provided safe harbour for white nationalists and nazis. But Reddit started as a social affinity network, and still in many ways maintains this profile in the broadest sense. There are channels on reddit for every possible special interest you can imagine. I am on dozens of them. So Noah told me one day earlier last year that he wanted to join the Reddit feed for his favourite youtube channel “Jack Sucks at Geography” and could he please create an account. I quietly tried to quell my own feelings of panic and tried to see the world through his eyes, took a deep breath, and told him that yes, of course he could do that. Also knowing that he was clever and resourceful, I had a feeling that prior to asking he’d definitely already made himself an account and read the entire history of that subreddit. But then we talked for a few minutes about the fact that there were subreddits (channels) with mean and dangerous people on them, and that there were people involved in grooming young people around white nationalism, antisemitism and other conspiracy theories, so I asked him not to join any other subreddits without asking me first and suggested we review his feed together periodically.
What happened next caught me (and possibly also Noah) by surprise. There was something about the ambiance of reddit which matched his personality – I think maybe the affinity focus but also the ways of having quite deep discussions about issues using helpful forms of indirect communication and deflection using references to memes. Noah decided that he wanted to become a community moderator and I discovered about a week later that he had managed to accumulate an astonishing amount of “karma” points on reddit (astonishing as in the amount that would take a normal adult several years to accumulate) and was a highly active moderator of several teen-specific subreddits. As I scanned his messages and activity every few days I could see hundreds of instances where he was reporting posts for inappropriate comments, “creepy” was the preferred descriptor by teen reddit, and evicting and reporting users who seemed to be underage (the reddit official policy is that you must be at least 13 years old to use the platform). I’m not sure if I should feel sorry for the large group of devastated 10-12 year olds out there who were confronted by Noah about their age and promptly kicked off the platform by him. He was also passionate about defending inclusion, especially for LGBTQ+ youth on the platform so they could find a safe space to chat with others. Here’s the avatar he made himself:
He was quite proud of his new vocation and was trying out developing his social profile. One post said, “Note that I am usually very active on reddit. Unless I’m sleeping or like on a plane also please make a flair for my posts”.
I wasn’t quite sure how to approach this with him and this is the desperately delicate dance PDA kids and parents have to do with one another. This was a new kind of energy I hadn’t seen from Noah for more than a year. If I confronted him about leaving the safety of that first subreddit without talking to me like we’d agreed, he would likely find this whole new world completely inaccessible. But in the spirit of our conversation, he hadn’t just identified and avoided unsafe spaces: he had become an active champion for online safety. So I took a different approach. I popped into his room where he was sitting in a chair in the sunshine the next morning.
“I noticed that you are a moderator on reddit now…” (his face turned expressionless but perhaps a bit pale), “…and I’m really proud of you for being a leader like that. You seem to have gotten quite a lot of karma buddy. How’d you even do that?”
I didn’t get much of a response, but I could see the flash of a smile of surprise and pride surface for a brief moment.
There was another dimension to Noah’s posting online – Noah had also begun testing out how to create new subreddits. He seemed to be actively interested in creating communities online. Some of these were about ridiculous internet memes, which were so convoluted that even I couldn’t untangle them. But one he made was called r/Christiansletstalk. The group description: “A place for Christian’s to chatAbout fun not weird things (NO SAYING LET STALK)”. The group has only one member: Noah. But I don’t think he’d really intended to get others on there. He was testing out the mechanics of community creation and also exploring a new interest.
You might have also noticed in that final line that ChatGPT transcript above had also picked up on some of Noah’s other really active conversation topics: hobbies, Bible reading, and prayer in your day. These last few came as a surprise to me when I was reviewing his chat history, and I need to explain a bit of the backstory so this all really conveys the kind of work he was doing and the ways that it arose uniquely from his own process of reflection that I’d had nothing to do with whatsoever.
About six months earlier Noah had asked me if we could go to church some time. Our family hadn’t ever returned to church after we stopped attending during pandemic lockdowns.This was especially a strange experience for me and may come as a surprise to some people that a professional theologian who was raised to attend church every Sunday as a non-negotiable element of childhood might not have been in a church for five years. But, when lockdown came, zoom church was a revelation. We could sit in our own home, manage our sensory sensitivities, choose whether to be on or off camera. It was almost like God initiated autistic church that year very suddenly. I grieve so much the ways that most other Christians don’t seem to have noticed that this beautiful thing happened, albeit briefly, for people who were marginalised in their worshipping communities, and have instead chosen a path of solipsistic anger. I especially grieve the way that many Christians – people like Che Ahn – built entire platforms to broadcast their rage about the affront to their personal liberties that lockdown represented when governments asked them to stop meeting in person to try and create safety in unknown circumstances for their vulnerable friends. I have a very specific experience of lockdown – our little family has always been more vulnerable than usual. If my wife or I got ill, the level of work involved in caring for our two kids would quickly become very overwhelming. And I did get very ill with Covid for a several long months and it had a huge and negative impact on our family, and I wish that we’d been able to be better shielded from the virus given our vulnerability. Our support network is scattered across the world – at the time, we were new to Birmingham, so had only met a few families we knew we could call into action if there was an emergency. As far as I can tell, most able bodied Christian leaders and digital meme-spreaders seem to have completely missed this dimension, and to be frank, have completely missed the heart of the Christian message in their crusades about “liberty”.
When this rage has died down and those people start to look around more diligently, they will notice another thing that happened in the last few years in churches, which is that after most resumed regular operations, a very large (but also mostly invisible) number of families with disabled children never returned to church. Sociologists are just starting to note some of this, and I do hope that a body of research eventually emerges to highlight this impact and untold story, but I’ve only become aware of the phenomenon anecdotally. We were one of those families – in part also not yet returned to church because we had also moved to a new house and community in Mid-Wales and it is hard work finding new community. But if I’m being totally honest, it was also because when we were finally forced to stop that weekly rhythm, we were eventually forced also to grapple with the relief that we felt at no longer having to fulfil a social obligation to participate in a form of community that has sometimes struggled to create accommodating space for disabled persons. So many beautiful people at St. Paul’s and St. George’s church in Edinburgh and Quinton Christ Church in Birmingham (there are also other briefer, but also lovely examples) have done so much to offer us kindness and create interpersonal space. But the format of a Sunday morning worship service and the physical configuration of a church building is just utterly hostile to many autistic bodies and it is simply too difficult to have to raise awareness about this while also trying to become part of a community when you are also physically exhausted all the time because life is just hard. I’ll highly recommend the work of scholar colleagues and friends such as Brian Brock on this subject,who has recently put together a book Disability: Living into the Diversity of Christ’s Body which covers some of these challenges really well. And when I return to writing, this is something I’ll be covering a bit more in the future.
But back to Noah – I was frankly astonished when he asked me. We hadn’t talked about church in years, and I’d assumed that he was relieved to be free of the obligation. I had begun covertly to explore churches in the local area to hold open the possibility of community for our boys in case this moment did arise, but I really didn’t expect it to.
A few minutes after Noah asked me about going to church, he asked a follow up question: “papa. Do you think that they will expect us to be quiet?” I hesitated and told him, “Yeah, buddy, I think they might.” The silence that followed was deafening.
He didn’t follow-up, so I assumed that maybe he’d lost interest, until this batch of social engagement online suddenly became a thing. And in the meantime, we’d been trying to find ways to check in with Noah about this curiosity, but it’s extremely hard to ask teenagers about their inner lives in the best of times, and in this case with a PDA teen, we were aware of how fragile his interest and energy was, so had left him to raise questions with us rather than trying to draw anything out of him. You can see his awareness of this in one of his Chat-GPT posts:
Noah: “I want to read the bible but its embarrassing if my parents see it, its their bible so its not like they aren’t atleast somewhat Christian. On the same day I put the bible in my room they saw it and mentioned it but didn’t mind and left it in here so it’s not like they care if I read theirs My grandma and grandpa also have atleast 1 so that’s more proof since they are my moms parents, I think my dads parents have one too We have a mini one I could use myself but it’s very dirty and broken”
GPT: Got it — I can see why that feels tricky, but it’s **actually okay and normal** to want your own space to read the
Bible… If you want, I can make a **tiny plan for teens to read the Bible privately in their own space**, without feeling
embarrassed or worried.Noah: Is it a good idea to just not mind if my parents see it
It’s been in my room since and they haven’t noticed sinceGPT: Yes — that’s actually a **really healthy approach**, Here’s why… If you want, I can give a **tiny routine for reading the Bible privately but confidently**, so it feels comfortable and safe in your room. Do you want me to do that?
Noah: i meant not mind if they ask or not not if they catch me, I tried to start the night before and the next night they saw and said smth like “what’s this? Are you trying to read the bible?” ( they do know what it is they are just curious if I
tried to read it), btw they don’t mind if I do theyGPT: Ah — got it! Thanks for explaining — that makes sense. [emoji:SMILING FACE WITH SMILING EYES]
Yes — it’s a **really good idea to not mind if they ask**…
and on it goes…
I think it’s possible for us to assume that when young people (or any people at all!) are experiencing social anxiety and neurodivergent distress, we don’t have an inner life, or are so consumed with the freight of disregulation that we don’t have time for much else. But in his little inner world Noah had just begun unfolding a whole spiritual exploration of his own creation. It’s not that he was hiding it from us, but it was something that he felt very shy about. He was aware of the need to set up patterns of deflection and indirect communication so that this new interest could have staying power for him. My day job involves lecturing on Christian theology and engaging in inter-religious dialogue on a variety of levels – and I think that our children are vaguely aware of this, but entirely unimpressed with me in every way (which is as it should be).
I’m so glad that Noah was able to stretch out and start to wonder about his own personal spirituality and transformation as a teen.
I’m also full of rage at the pointlessness of his dying right now, just as he was starting to unfold possibilities for himself. And here I would offer a (I’m sorry if it’s sharp) word of caution to Christian friends who may want to speak words of comfort around God’s timing or God’s sovereignty. I see nothing of that in this. And such words are inappropriate for moments such as these. Noah was planning for his future. He’d begun sketching out plans to go to College (this is the term sometimes used for the latter years of high school in the UK) and University. Only a week ago he asked ChatGPT: “What if my future wife isn’t Christian Can I still marry her?” ChatGPT provided the same answer I would have to that question: “yes”. Noah had a future, he was working hard to unfold that chapter in his life.
I want to especially take a moment to pause and reflect on the ways that we respond to bereavement in the context of disabled lives. Disabled lives are not less mournful. They are not held differently in the curve of providence and grace. Our lives are not crafted to be more brief. God does not kill our children to relieve us of the stress of caring for them. The death of a child is an unimaginable, unspeakable tragedy. The taking away of that future is an evil thing. Please think of these truths and hold them with me if you can. They are hard to hold on to. Facing them is terrifying. We are confronted in these times with our own frailty and failures and this is good work.
Eschatological hope does not ease the darkness of the valley of the shadow of death. We may not fear evil, but we do not pretend to be unaware of its shadow. Among all of this I do know and want to hold on to the truth that, as another Islamic theologian friend said to me recently “We belong to God and to Him we return”.
There is so much more to say, but I think this is enough to say for now.
There are so many kind friends who have reached out, and many more who I know are holding us in reverent silence. The thing I feel with the most desperate urgency is to finally properly introduce you to Noah in the way that I had planned to do as soon as we were all back together again, or ready, or whatever. We had so many plans for future adventures with all of you, there were so many plans I’d made (and which I think Noah was making himself) to connect around our shared interests in spite of the way that our community of friends and family is a scattered diaspora.
I have wandered around the house looking for chores to keep me busy all week, trying to periodically distract myself from the grief, or perhaps just to feel grounded with ordinary things. And I have also had a few people gently ask if there’s anything they can do, and I appreciate that this comes from the same place – a reckoning with the distance between us, a desire to connect and support and I appreciate it so much. I’ve been thinking a bit about some options that would have made Noah happy and am happy to share these with you.
- Flowers: We’ve just filled our last vase, with thanks to all the friends who have sent flowers, so please no need to send any further flowers. But a Noah approved riff on the botanical theme would be to create a soothing cozy moment and get yourself or someone you know a Lego Botanicals set.
- Meals: We’ve got family staying with us at the house for the next few weeks cleaning and cooking for us so food needs are sorted. And after immediate family goes home, I think friends involved in our local home education cooperative are running a food rota for us. If you’d like to be on the food rota, I can send your details to them, just drop me a note on whatsapp or signal in a couple weeks.
- Noah’s favourite bird sanctuary in Wales is the Dyfi Osprey Project. I think he’d be chuffed to know that friends made a donation in his name to Dyfi: https://www.dyfiospreyproject.com/donate
- Noah was passionate about creating safe spaces for queer youth. I think that a nice way to carry forward the legacy of hospitality that he was only just getting started building might be to help out AKT, a UK charity which supports LGBTQ+ young people facing or experiencing homelessness: https://www.akt.org.uk/donate/
- We’ve had a few people ask if we’ll be setting up a memorial fund, scholarship in Noah’s memory or opening up a portal to help with costs. I’ve not got any plans for this yet, but will let you know if we do something.