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A certain kind of grief has been pulling at my edges, and it’s about the places where I don’t feel met.

Grief is often thought of mainly in terms of losing loved ones or major life transitions, but it encompasses so much more, particularly as a sensitive person who feels it all.

Grief is not linear, perhaps especially for neurodivergent folks, something beautifully explored in this article from of Neutrotribe. It can be frustratingly spiral-y and take detours outside of logic, as well as show up in a delayed way, months or even years later.

Bridgette Hamstead of Neurojustice also refers to the “delayed wave” autistic folks often experience when it comes to grief. The way she describes the grief related to anticipatory RSD (rejection sensitive dysphoria), common in ADHD, rings many bells with my experience within intimate relationships:

I’m no stranger to “chronic, low-level grief” as well as “Big Life Event” grief. Over the past 25 years, I’ve grieved:

• The person I could have been, had my neurodivergence been recognised and supported from early life.

• The end of several meaningful romantic relationships, each of which I thought would be my “forever person”.

• The disappointment of not having the family life I had dreamed of, when I found myself largely single-parenting even before I technically became a single parent.

• The loss of being the primary caregiver for my son when he was ten.

• The decline of my health, mobility and capacity with Chronic Fatigue Syndrome (CFS) and the restriction of so many formerly taken-for-granted activities.

• The transition from an intense 4-year monogamous relationship to a polyamorous one, catalysed by the desires and needs of my partner, and all the changes that came with that. Yes, I chose this path, and yes, I also feel grief at what was lost.

• The loss of a relationship with my sister, who I’ve been estranged from for the past three years (our second estrangement).

• Leaving two intentional communities where I felt loved, purposeful, and valued – and also very conflicted and overwhelmed. Being an active community member was in conflict with my needs as a highly sensitive AuDHDer. Having to choose between the need to belong and the need to look after myself was so painful, and I still miss those times of closeness, fun, and shared rhythms, feeling connected to tribe and humanity.

• Not having a close relationship with either of my parents, and my father, in particular, showing little interest in connecting with me.

• Friendship loss, often in sudden and shocking circumstances.

… and probably a few more besides!

Some griefs are more embedded in the everyday. They sneak up on you, and though subtle, they are also profound.

One of these is the grief of not feeling met with curiosity by others.

That may sound like nothing, but it isn’t nothing when this is what you need to engage fully; to feel seen and heard and, well, met.

It’s something I’ve been increasingly aware of in my AuDHD unmasking process, as I’ve begun to notice what makes me feel safer to open up, and what closes me down or keeps me at the fringes.

Recently, someone I consider a close friend visited me for the first time in seven months despite living locally to me. Over the two and a half years we’ve known each other, which began with us being housemates, we used to meet much more regularly. This was to be her last visit before leaving the area to move a considerable distance away, meaning that given my general energy levels, I’m unlikely to see her much at all, if ever.

She’s a very self-directed, creative and independent person, and I’ve accepted that her way with friendship is to ebb and flow; that her periods of little to no contact aren’t a reflection on her valuing of me. I do need friends who are more consistent than this, but I accept that not everyone can offer that, even me, when my health fluctuates. I don’t put up with persistent flakiness but I do accept someone communicating in integrity what their rhythms are – especially when I understand the reasons.

After she left, something was niggling at me in a way I couldn’t shake off. It was only when I discussed it with my partner, R., that I realised what it was.

Most of the conversation was about her. I asked questions, followed her threads, unfolded what she was saying with her. She asked me no questions, and when I did share a little of what was going on for me, I felt frustrated because I couldn’t complete a full thought.

As an AuDHDer, I think in paragraphs, rather than sentences. I’m compelled to give the relevant context. I need to explain both what happened and my inner process around it. But all of this can be done quite concisely, because I am much more of a listener than a talker. Like many neurodivergent folks, I grew up not being listened to, told to cut down what I was saying, and being laughed at.

So I learned that listening was safer. I adapted, and made myself useful as a person who listens. I can’t count the number of times I’ve been told by friends I should become a therapist or counsellor. (If only I had the capacity!)

Still, when I’ve been listening to someone for a solid thirty minutes or even longer, and had a full update on all areas of their life, I think it’s reasonable that I get a chance to speak my way to the end of just one thing.

But what happened was this: in response to everything I said, she came back with a deep thought about the theme of what I was saying. When I explained some relationship dynamics I was experiencing, only getting a chance to scratch the surface, she responded with, “It’s all about boundaries,” and went on to talk philosophically about boundaries as a general concept and how it applied in her last relationship.

I’m not talking about the thing that neurocomplex people are often accused of: showing “lack of empathy” by sharing a related story from their own life. This is often misunderstood by neurotypical folks. I am all for relevant life stories that show me the other person truly understands: this can actually make me feel more heard than nodding and sympathetic expressions.

What I find hard is this: she didn’t loop back round to me and my specific situation or story, or ask any follow up questions, and I felt frustrated and incomplete. Because, although I’m a pretty “meta” thinker, love to wax lyrical on philosophical musings, and adore talking about big themes and interconnecting issues, when it comes to emotional stuff, I still want to feel heard and felt on what matters to me, and on why it matters.

It’s all about the specificity of being known. And the thing is, for me, the issue I was sharing about wasn’t about boundaries. It was far more nuanced than that, and I felt this delicate nuance being reduced to a pre-determined framework.

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When my partner, R., shared with me his perception that this friend “thinks her inner world is more interesting than anyone else’s,” at first I felt protective of her, pulled to be loyal.

But I realised there was truth in what he was saying, and that in all the time of my friendship with her, I’d never quite been able to name this myself.

We’ve had a lot of deep shares, but I can see now that they consisted of her using my life events and ponderings as a jumping off point for her own, without tending to, and honouring, the complexity of what I was sharing.

Without staying with it long enough to let it bloom into the fullest expression, the kind of expression that could let me feel satisfied with the conversation.

That is what I long for, and I don’t want to only get it from my therapist once a week.

When it comes to the lack of questions, I’ve given her the benefit of the doubt, as I know she’s a person who is deeply respectful of, and protective of, boundaries. I thought that perhaps her apparent one-sidedness came from a desire to not be intrusive; I know a lot of people don’t ask questions because they’re afraid of being seen as controlling the conversation.

But it’s about more than questions. When I don’t get to unfold my story, but the other person always does, it starts to hurt. As Bridgette Hamstead alludes to, the RSD is activated because there’s a sense of not feeling cared about by the person. The exchange starts to feel non-reciprocal and lonely.

I realised that this lack of apparent curiosity in others is the case with the vast majority of people I know, and often leaves me baffled. For me, it’s not an effort to ask questions. The type of brain I have produces them in volumes – in fact, I have to hold back so I don’t sound like an interviewer.

But I am so intensely, genuinely curious.

If you tell me you went on holiday, I want to know where, and how was the food, and what did it look like, and how did you feel?

If you tell me you broke up with your partner, I’m not ready to move on to the next chapter of the story. I want to know whatever you feel comfortable sharing about that. I want to know more about you, through the events of your life and your thoughts about them.

And that is such a big part of emotional and intellectual intimacy to me.

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Like so many things I’ve faced up to since my late-realised neurodivergent journey began, I’ve been coming out of denial about the lack of truly feeling met in my curiosity and longing for depth. And it feels sad.

I am blessed to have a couple of relationships where I am met in this way: one friendship of over 25 years, unfortunately long-distance, and my partner, R., who won me over largely by asking relevant and interesting questions. I have another friend who, while not a big question-asker, does give incredibly thoughtful reflections that leave me feeling deeply heard and met.

For the others? I am often the Agony Aunt, the willing listener, the counsellor. And since my energy has been limited through autistic burnout and CFS (Chronic Fatigue Syndrome), I cannot do as much anymore.

Maybe it’s OK that I hadn’t seen this friend for seven months. During that time, I was doing a lot of somatic and inner/healing work and pouring far less into others outside of my primary relationships. Maybe it’s for the best that I wasn’t putting much energy into a relationship that in some respects is authentic and in others is still, ultimately, performative.

As I feel this grief, I feel also the potential for getting clarity on how I can have my social needs met. Talking more with other neurocomplex people online helps, but I long for it in person too.

And as I get older, it’s hard to deny the sense of heaviness of the accumulated losses and disappointments, even as I find new ways of experiencing joy and contentment that were inaccessible in my younger years. The self-honesty can be brutal – but necessary.

Over to you. What helps you feel seen, heard, got or met in conversations? Are you a question asker, a storyteller or a listener? Or both/all? I’d love to hear anything else that arises as you read this, too.

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I have never understood how, for other women, their monthly cycle didn’t stop them from “just getting on with life.” The only time this was remotely true for me was when I was on the contraceptive pill, which blunted my pain and PMS at the cost of worsening my alexithymia and lowering my libido.

As an AuDHDer, I know I’m not alone in my neurodivergence colouring my experience of the menstrual cycle throughout my life — and, now, influencing how perimenopause unfolds.

A snapshot

The first time I got my period, I was relieved and excited. Almost fourteen and a late developer, I had waited a long time to join my peers. As an unidentified AuDHD and dyspraxic girl, I was already navigating a minefield — socially awkward, trying to decode mixed messages, ducking into the showers after gym to hide how uncoordinated I was. A period felt like finally becoming a member of the club.

The reality was underwhelming. My mother’s response was offhand, and I soon found that the pain accompanying each cycle was simply another thing I had to cope with. At times, it was so bad I’d be physically sick or faint — and gym teachers would tell me “running will help your cramps,” entirely failing to grasp the scale of what I was experiencing. I also had PMS that manifested as intense irritability, overwhelm, low mood, and a strong urge to push romantic partners away.

In my early thirties, having gone off the Pill after nine years, having a baby, and now wanting non-hormonal contraception, I discovered the Fertility Awareness Method and began charting my cycle. This led me to menstrual cycle awareness, and I eventually trained as a menstruality mentor through Red School. Through the practices I learned there, I experienced a significant reduction in both menstrual pain and the PMS that had always plagued me.

Then perimenopause arrived in my early forties, and the terrain shifted dramatically. Being a passionate believer in the naturalness of the female life cycle, I was resistant to the idea of perimenopause being any kind of an issue in my life, but reality and research soon tested this confidence.

My menstrual pain intensified and required prescription medication. PMS resurged so forcefully that I’ve wondered whether I have PMDD, so dramatic have my mood swings and relationship switch-offs become. My executive functioning declined and my memory was challenged. All this while I was beginning to unpick my neurodivergence — I pieced together my AuDHD story at 41.

I’m now 46. Many of my friends are neurodivergent and on HRT (and still struggling), while I continue on, hopefully, with herbal hormonal supplements. It has never been clearer to me that hormones are an undeniable force in our lives, influencing everything from our motivation to our ability to work, concentrate, parent, and simply refrain from screaming.

It’s different from the start

Because oestrogen “improves brain signalling and receptor availability for the serotonin, glutamate, and dopamine systems, ADHD tends to look qualitatively different in women than in men”, says Dr Bowen Tyler Marshall. ADHD symptoms also change across the menstrual cycle in adult women*.

“Unlike teenage boys with ADHD, who tend to act out, girls with ADHD often internalise their problems,” explains Stephen Hinshaw, Ph.D., who has spent over a decade studying girls with ADHD. “This makes their struggles easier to overlook.”

For autistic women and girls, research by Rebecca Ellis shows that reduced interoception and alexithymia can further complicate the menstrual experience. Meltdowns, burnout, and sensory sensitivities play an important role in what is already a charged monthly event. Hormonal shifts can reduce the ability to mask and create feelings of being out of control, while irregular periods bring an additional layer of distress for brains that rely on predictability.

Women with ADHD also experience PMS more acutely than women without, says Patricia Quinn, M.D., director of the National Center for Girls and Women with ADHD. “Feelings of sadness and anxiety typically worsen in women with ADHD during this time,” she explains. According to Dorani et al. (2021), 45.5% of women with ADHD also meet criteria for PMDD — a severe, chronic form of PMS resulting in debilitating emotional and physical symptoms that flare during the luteal phase and usually improve shortly after menstruation begins.

One of my readers describes the early, confusing terrain:

Hormonal changes at puberty can also lower the effectiveness of ADHD medications, potentially requiring different doses or formulations. Yet the impact of the menstrual cycle is rarely factored in by doctors when making diagnoses or prescribing medication. This is one more example of medical misogyny — the systemic bias against women in healthcare that results in overlooked symptoms and a failure to account for their specific biology.

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When the cycle becomes a battleground

ADHD symptoms are higher when oestrogen decreases. They tend to spike in the early follicular phase (from day one of your period) and the late luteal phase, in the days just before menstruation — something that very much chimes with my own experience. The mechanism is fairly direct: when oestrogen falls, dopaminergic signalling decreases, which is the last thing you need when you already have the low dopamine levels associated with ADHD. A 2023 review on female-specific ADHD pharmacotherapy confirms that “low-oestrogen periods are associated with worsening ADHD symptoms and altered stimulant response.”

Women with both PMDD and ADHD also show more inattention symptoms throughout the entire cycle, not just premenstrually, suggesting a shared underlying vulnerability in dopaminergic regulation. That said, these are still-emerging findings, and not every woman with ADHD will experience the same pattern.

The progesterone paradox

The standard story is that progesterone is calming. For many neurodivergent women, it isn’t — and it’s important to understand why.

According to Dr Helen Wall, who runs an NHS menopause clinic, the key lies not in progesterone itself but in what the body turns it into. Progesterone is metabolised in the brain into neuroactive steroids which strongly affect the GABA-A receptor, “the brain’s primary calming system”. In theory, this should produce calm. In practice, for some women, the response is anything but calm: the picture includes anxiety, low mood, irritability, slowed cognitive processes, and blunted emotions.

This progesterone intolerance is more common in women with a history of PMDD, postnatal depression, recurrent hormone-linked depression, or neurodivergence. Research into PMDD has shown that in these cases, there is often no problem with progesterone levels. What’s happening is an abnormal brain response to the metabolites. Blood tests are, therefore, frequently unhelpful, which goes a long way toward explaining why so many women go unheard.

For neurodivergent women, who typically rely on cognitive scaffolding, need predictability, and have heightened emotional and sensory processing, progesterone can reduce dopamine tone, increase brain fog, blunt emotional clarity, and amplify rejection sensitivity — the opposite of what it’s supposed to do. Understanding this isn’t just academic: it has real implications for how HRT is tolerated and adjusted.

If you have ADHD or for any other reason feel a bit full up by this point of the essay - here’s a good stopping point to take a pause and come back later to read about perimenopause and neurodivergence!

When perimenopause hits: it’s neurological, not psychological

If you’re sensitive to hormonal shifts across the menstrual cycle, as many neurodivergent women are, perimenopause is likely to be felt more acutely. From my early forties, I noticed I was more affected by both my ADHD and autism than I had been before: more introverted, with a much less robust social battery, and my ability to focus, multitask, and manage responsibilities noticeably impaired.

This is borne out by evidence. The menopause-neurodivergence literature increasingly frames perimenopause as a brain event, not just a reproductive one. Many women receive their first ADHD or autism diagnosis during this stage, and a 2025 population-based study published in European Psychiatry found that perimenopause begins up to ten years earlier in women with ADHD.

In this study, severe symptoms were most concentrated in the 35-39 age range, compared to 45-49 in women without ADHD. Being unprepared for this change at this earlier life stage can be even more destabilising, and I’ve seen this close at hand: an ADHDer friend of over 20 years was shocked to find out she was going into early menopause in her early 40s when she had trouble conceiving a second child.

Professor Julie Gamble-Turner, co-author of Autistic Menopause, puts it clearly:

“Menopause isn’t just something that happens in the ovaries. Research shows it’s a neurological transition point — a time of significant change in the structure and function of the brain. If you’re someone with pre-existing neurological differences, or with a history of life stress that has affected the brain, it can profoundly shape how you experience menopausal symptoms.”

The deterioration in functioning that often accompanies this transition can, as Bridgette Hamstead writes in “The Perimenopause and Late Diagnosis Pipeline“, look to the clinical system like “the onset of a new psychiatric condition — depression, anxiety, perimenopausal mood disorder.”

But the hormonal shift isn’t creating something new. It is a trigger — one that removes “the neurological scaffolding that had been holding an unrecognised neurodivergent nervous system together across decades of sustained masking,” in Hamstead’s words. What follows is not an addition of new symptoms but an amplification of what was already there: sensory sensitivities, executive function challenges, emotional dysregulation, and sleep disturbance, all turned up.

One reader described it this way:

writes about this in her own account of late diagnosis: despite being well-informed about neurodiversity and supporting a neurodivergent husband and children, she hadn’t recognised herself in descriptions of autism.

“Then, perimenopause entered the chat. Suddenly, I was no longer the one who could remember, plan, organise, and manage everything. In fact, I could barely manage anything. My coping skills and ability to tolerate sensory input collapsed. I found myself frequently locked in my dark bedroom to avoid contact with anyone for any reason. Now I know that the hormonal instability of perimenopause had pushed me over the edge into full autistic burnout.”

As Amber also points out, the masked perimenopausal autistic woman is not the image of “autism” that we see represented in mainstream media, making it easy to miss without more public awareness — something she strives to address through writing about autistic-coded female characters.

An ADDitude magazine survey of 1,500 women found that ADHD impairment peaks in menopause, with 94% saying symptoms had become more severe. Half called memory problems and overwhelm “life-altering” in their 40s and 50s, while 83% reported noticing ADHD symptoms for the first time during perimenopause and menopause. Symptoms ranged from brain fog and distractibility to overwhelm and rage — and many women had their concerns dismissed as simply “anxiety and depression.” My own word and name recall has become embarrassing over the past year, and I’ve been erroneously pointed in the direction of an anxiety “funnel” by doctors who don’t recognise perimenopause while cycles still continue.

One reader told me:

Perimenopautism

For many of us late-identified neurodivergent women, the changes arrive as a perfect storm alongside our dawning awareness of our neurodivergence. of Divergent Menopause has coined the term “perimenopautism” to describe what she sees as a common yet under-identified life stage: being late-diagnosed autistic while simultaneously moving through perimenopause. She defines it as “a phenomenon that affects the functioning, capacity, cognition, and emotional regulation of an autistic adult woman/AFAB person floored by their hormonal fluctuations in midlife.”

Signs include temporary regressions, mood changes, sleep disruption, increased sensory sensitivity, and menstrual irregularity — with unpredictability colliding directly with the autistic need for certainty.

Galloway is vocal about the mental health stakes. Autistic perimenopausal women are frequently dismissed, gaslighted, and misdiagnosed, and when that happens, “symptoms escalate into cognitive, emotional, and physical crises.” She frames burnout — the common outcome of all these stressors — not as a one-time event to climb out of but as a cyclical process requiring early support. And she is direct about the severity: “1 in 4 ADHD women have attempted suicide.”

Her own experience was extreme. “I went to Hell and back in neurodivergent perimenopause,” she shared in my subscriber chat. “It’s an enormous relief to be in surgical menopause, which ended it all last August. If that hadn’t been an option, I might have ended it all myself instead — it was that bad.”

The potential impact on mental health cannot be overstated. One of my readers described “a deep, rageful darkness a few days before each period that progressed into panic attacks” as she realised she had been masking AuDHD traits most of her life, and that they were now surfacing with new force.

As Bridgette Hamstead notes, perimenopause makes cycle tracking significantly more complex, because the cycles themselves become irregular. For AuDHD people such as myself, who had relied on cycle awareness as a planning tool, the loss of that predictability is “an unexpected additional challenge on top of the symptom burden.”

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Sleep, hyperarousal, and the nervous system piece nobody gets

3 am wakeups, anyone? Being awake for hours from 2 or 3 am has become a regular staple of my sleep experience — (peri)menopause is, notoriously, a hell realm for sleep. This is linked to the fluctuation and decline of oestradiol and altered hypothalamic and circadian regulation. For neurodivergent women, this compounds: the same dopamine system already dysregulated in ADHD also governs sleep, arousal, executive functioning, and sensory processing, so a fall in oestrogen tugs on all of them at once. It’s a self-perpetuating loop, and it’s no fun!

But there is another piece to the sleep problem that rarely gets named. Research published in the Menopause Journal shows that during perimenopause and early postmenopause, women experience what’s called “hyperarousal”: when the nervous system is chronically activated. This explains why, according to the British Menopause Society, 40 to 56 % of menopausal women continue to experience sleep disturbances even after hormonal changes have been addressed.

Here’s what happens: when progesterone drops — and it tends to fall earlier and faster than oestrogen, because it depends on ovulation, which becomes erratic well before oestrogen meaningfully declines — the nervous system loses its primary calming signal. Progesterone activates GABA receptors, telling the brain it’s safe to rest. This is the same metabolite pathway that, earlier in life, can paradoxically destabilise progesterone-sensitive women, as explained by Dr Helen Wall’s work, which I discussed earlier — but whose steep withdrawal here removes a brake the brain has long leaned on.

When progesterone disappears, the sympathetic nervous system gets stuck in “on”, no matter how exhausted you are or how normal your lab results look. Because your system is still scanning for threat, you wake in the small hours. And HRT, while it can help with many issues, doesn’t automatically reset a nervous system that has learned to stay vigilant.

Essentially, what you end up with is a narrower window of tolerance. This has certainly been borne out in my own experience. The amount of driving and socialising I manage now is a tiny fraction of what used to be achievable for me, and it’s not just because of fatigue levels; it’s because I get bumped much more easily into the stress zone, and ultimately, I want to avoid that.

For autistic and ADHD women, who already tend toward autonomic dysregulation, altered sensory processing, and baseline difficulties with sleep, this hyperarousal doesn’t appear in a neutral scene. It amplifies what is already there.

Is it ADHD, or is it perimenopause? (It’s both.)

A common, and frustrating, argument is that women being diagnosed with ADHD in their forties are “just” experiencing perimenopause-related cognitive symptoms. This is not supported by the evidence.

“Although both ADHD and perimenopause can present with forgetfulness and concentration problems, their underlying mechanisms differ,” explain Wynchank and Kooij (2026). “In perimenopause, fluctuating oestrogen is associated primarily with inefficient attention and working-memory encoding — often perceived as ‘memory loss’ — whereas long-term storage and recognition remain intact. By contrast, ADHD involves lifelong deficits in executive control and sustained attention that affect multiple cognitive domains independent of hormonal status.”

What perimenopause does, though, is reveal. As puts it on Substack: “Menopause is the great unmasker. For decades, they might have used high levels of effort to compensate for their traits. When oestrogen — which supports executive function — drops permanently, the mental battery required to keep that mask on simply runs out, making long-hidden traits impossible to ignore.”

One reader, diagnosed AuDHD at 56, describes what that unmasking has looked like:

As disruptive and painful as the unmasking can be, it can also be the beginning of something more congruent with the self. Something, perhaps, more true. I found myself remarking to my partner yesterday that my happiness levels have definitely increased over the past couple of years, despite increasing health challenges due to CFS and autistic burnout as well as perimenopause. I know better than ever who I am and what I need and have hope for a future where I can build on that.

What can help

The research is clear that AuDHD perimenopause is not simply perimenopause with some extra symptoms. There are real qualitative differences, rooted in the interaction between neurodivergent neurology and this hormonal transition, that require tailored support. One of the key challenges is finding this support.

A 2024 systematic review found that autistic people going through menopause report “heightened sensory sensitivities, fluctuating mental health, and significant challenges accessing appropriate healthcare” — and feel frequently misunderstood by clinicians.

Dr Rachel Moseley, co-author of Autistic Menopause, is direct about what’s needed: “Neurodivergent women and people assigned female at birth have been invisible for a long time. Since this group have much higher suicide rates, it’s vital that the government commits resources to identifying them and providing the support they need.”

In practical terms, an ADDitude survey found that diet, exercise, lifestyle, and medication adjustment all play a role. Meditation and accountability check-ins with family or friends were also helpful. Blood sugar stabilisation is particularly foundational — its effects on mood and energy are profound for both ADHD and perimenopause. I have found that eating regularly and pre-emptively, before a blood sugar crash, makes a vital difference in my ability to function, as does including a good dose of protein in every meal, which provides the amino acids necessary for the neurotransmitters dopamine and norepinephrine (promoting alertness and focus). The gut’s role in supporting neurotransmitter function during the perimenopausal transition is also increasingly worth paying attention to.

On medication: Wynchank and Kooij (2026) note that many women report standard ADHD medications becoming less effective during perimenopause, or needing dose adjustments. Their own new open-label study suggested that increasing stimulant dosage during the premenstrual period improved both ADHD and mood symptoms. Hamstead also notes that medication needs in postmenopause may differ from both the pre-perimenopause baseline and the perimenopausal period, as the dopaminergic environment stabilises at a new, lower oestrogen-supported level.

Perhaps most importantly, those around us need to understand what is happening. Hamstead writes that realistic expectations and sensitive support from the people in our lives are not small things. Community — practical help, therapeutic support, medical care, information, and self-advocacy resources — is, for many of us, load-bearing.

In terms of information, Bridgette Hamstead’s AuDHD Guide to Perimenopause and the resource pack “Resources for Autistic Women and People with Ovaries at Menopause“ from Dr Moseley and Professor Gamble-Turner are two good places to start.

The nervous system hyperarousal piece can be addressed with somatic tools and somatic therapy, and, as with so many issues, the solutions should not be individualised. For many of us, our work and social environments are hostile waters to swim in, and the ability to tolerate this in earlier phases of life is now eclipsed by the altered hormonal picture and change of life phase. Structural changes to accommodate the reality of such a large proportion of our population are essential, and very overdue.

The neurodivergent community has been vocal about all of this for years. The research and clinical practice are slowly beginning to catch up. Given what’s at stake, they cannot catch up fast enough.

For now, naming what’s happening is in itself valuable. For so many of us, understanding the hormonal dimension of our neurodivergence has been the first moment of real compassion toward ourselves. It’s what allows us to find that reframe from “Why can’t I just cope?” to “Of course this is harder.”

I know that’s been true for me. And I know from the messages I receive that it’s true for many of you, too.

*women and AFAB, as is intended throughout this article.

Thank you for reading! If you’re a neurodivergent woman affected by these issues, I’d love to hear from you.

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©Morgana Clementine, all rights reserved. Please only quote with an attribution and link.

AI disclosure: Claude was used as an occasional research partner in this essay; all the writing is my own.

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Every now and then, I pick up one of my old journals and read at random. It’s an exercise I approach with caution, because sometimes reading how things were years ago can bring up visceral feelings. Other times, it can leave me with a refreshing perspective on my life journey and a comforting sense that although my health has declined over the past few years, my life has also improved in many other ways.

This week, I opened a journal from 2 1/2 years ago and was immediately catapulted back into a tumultuous time.

Your articles are super affirming, and full of wisdom that I can learn from. I really appreciate the care you take to create and curate your articles - it's an inspiration.

~ Sally-Shakti, paid subscriber

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(Begun on 15th May - this is a paced essay)

I’ve just returned from a very short woodland walk up the road from my house. It immediately right-sized me.

What do I mean by that?

Being online a lot, dependent on online life for much of my social and intellectual stimulation, means that I often feel like everything is right on top of me in a huge, messy clump: the state of the world, the state of the neurodiversity paradigm (and the endless debates and seemingly boundless ignorance), the recent local elections here in the UK, the rise of fascism, climate change … you know, all the things.

And walking that little slice of woods, still hearing the traffic on the A487 alongside through my noise cancelling Airpods, but humming with the bluebells and primroses and oaks, I’m reminded that I’m just another little human being on this planet.

Another being out of billions of others.

I remember that my time will pass, everyone’s time will pass, and it’s OK for me to just drop it all and walk in the woodland and do my little bit.

I also bumped into my next door neighbour and actually didn’t mind, although I went back into my house a different way just to avoid her only the other day.

We had a really pleasant chat, albeit peppered with things she’s told me at least four times (she’s 84) and she told me about the local choir. I’ve sung in choirs most of my life and have started to miss it after almost two years, having given up for various reasons from location and health (because of low energy, I’m not good with evening stuff) to feeling like I stuck out like a sore thumb with all the “normies”.

I briefly allowed myself to imagine going, wondering whether the inevitable masking would be worth it, what I’d have to wear, and there was something beautiful about even considering it.

"It is so precious to me to see my difficulties put into words and understand that I'm not alone with these struggles ... it makes me feel less shame and more love for myself. Priceless.”

~ Jess, paid subscriber

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Content note: mention of abusive experiences

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“You don’t have to be perfect. Not a single human being in this world is perfect.”

Last week, I cried when Kristin Neff’s voice, on a self-compassion meditation, told me what should be so obvious.

Because despite having heard this kind of message probably a thousand times, during my decades in the personal development and wellness “worlds”, I still don’t believe it. In fact, these spheres of influence have played a significant role in the maintenance of my sneaky perfectionism: the self-help books and wellness hacks told me that if I could just get it all figured out, I would heal myself and be OK again.

I would be good enough.

This stubborn, outdated part of me still believes that I am the exception to the inherent imperfection of the whole of humanity. That I have to be perfect to be good enough, to be loved. The all-or-nothing thinking that comes as a side order with autism doesn’t help.

And, in terms of this belief system, nowhere is there more evidence of imperfection than in being chronically unwell despite having tried everything within my means to get better and be a more functional human being, for the past 14 years.

What did I do wrong?

Often, when I have a CFS (Chronic Fatigue Syndrome) flare, which has been more frequently lately, I think it’s my fault. I desperately try to work out what I’ve done “wrong” to cause it. Did I suppress my emotions? Did I do too much on a physical level? Did I fail to be my authentic self in every moment, perfectly?

Similarly to all the years I cross-examined the actions judged as weird or inappropriate by others who didn’t understand my neurodivergence (even I didn’t yet understand it!), I’ve been looking for clues as to my role in things, because that felt like the one area where I could exert any power. There’s little more inducing of a feeling of powerlessness than having a disabling condition, especially one that is impossible to predict due to its fluctuations.

Lately, I’ve begun to wonder if it would serve me better to surrender to this fact: that at least some of the complex interrelated web of factors causing me to feel so unwell are beyond my control. It could be the high pollen count triggering inflammation and mostly bedbound days; it could be meeting a friend for coffee last week; it could equally be my menstrual cycle or the emotional stress of that argument with my partner. It’s so overwhelming to untangle that there’s a sense of relief in releasing the illusion of control, accepting that I’m doing the best I can with the hand I was dealt.

Following the breadcrumb trail

And that hand was a tough one to start with, let’s face it. On chronic illness groups and forums, there is often a sharp divide between those who believe our illnesses can be recovered from, and those who believe it is a life sentence. Often, a further divide exists between those who believe the causes are solely bio-physiological (viruses, genetics) and therefore wholly outside of our influence, and those who have a more holistic view, allowing for emotional factors (trauma, suppression).

I believe both have a part to play, and try to resist simplistic solutions. I’ve tried a multitude of emotional release techniques as well as supplements and nutritional changes, and have stripped my lifestyle back to the bare minimum of demands, yet, if anything, I’m more unwell, perhaps because my body is now able to speak even louder without the constant background noise. Still, sometimes, the lure of genetics as the answer - to “let myself off the hook” - is compelling.

Sitting in my sunny garden recently on one of those days when that was all I could manage, I had a sudden wondering: How come my lifelong severe eczema became dormant six years ago but the CFS, mild until then, has been taking centre stage since?

I became curious about the link between the two conditions, and sure enough, Google told me there was one. Atopic conditions like eczema, asthma and allergies (the holy trinity I’ve been blessed with since I was a baby) are hereditary, and significantly increase the risk of CFS. The underlying physical mechanisms involve the immune system and chronic inflammation. My somatic therapist, also neurodivergent and a chronic illness veteran, has often pointed out to me that internalised, suppressed anger is a core factor in CFS, and it appears externally in eczema, the itchy, inflammation on the surface for all to see.

I remember having one of my worst outbreaks of eczema at sixteen, when my father’s abusive behaviour in our home had fallen to new depths, but I had also begun to stand up to him for the first time, and the power struggle was terrifying. The next big flare up was at 24, when my long-term boyfriend and great love cheated on me and left me for a 16-year-old.

And my CFS? Symptoms appeared for the first time after I had to leave my rented home with my three-year-old son due to abusive behaviour from two neighbours, including physical threat. We ended up moving three times that year, and I kept going because I had no choice, but I was lying down all morning most days while my son was at nursery, unable to work. There was also a huge amount of mold going on in the house we ended up in, though I didn’t realise until we’d left. This stuff is so multi-layered, but the clues have become clearer in retrospect.

Anger and her sister, grief

Back to the anger. Being neurodivergent in a neurotypical world is a recipe for suppressed anger and frustration. Our “nos” aren’t heard or honoured. Our “yeses” are dismissed, ridiculed and misunderstood. The line between “me” and “other” constantly blurred as the innate human needs to belong and feel safe take precedence over our need to be ourselves. The masking that serves for survival begins to turn in on ourselves.

Perhaps, just as it wasn’t my fault that this anger was forced to go inside, the ways it shows itself in my symptoms is not my fault either. Nor is it my fault that this all takes a tremendous amount of time, and most of all, safety, to unwind.

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And for another twist: I’m pretty sure all this anger isn’t just mine, especially since I first developed eczema at only three months old. My mother’s anger, as a likely undiagnosed neurodivergent (autistic) person herself; the inter-generational anger of my grandmothers, who experienced domestic abuse and abandonment; my father’s (likely ADHD) anger, as the boy who was separated from his mother at eight, passed around from pillar to post and neglected by his absent father and new stepmother while relegated to boarding school.

As well as anger, there is so much grief. Not only the grief of the painful childhood and struggling decades of the late-diagnosed experience, but of the loss of the ability to participate in the world in the ways we expected to be able to.

These words from of My (Long) Covid Pause in her beautiful essay, How long does it take to grieve a body? pierce to the heart:

“It’s like freaking groundhog day to grieve the wellness I had, and the illness I had no way of preparing for.”

I responded:

This past week, I realised that I was (not so) subtly rejecting myself through rejecting the way my body is showing up. Something fell into place: empathy landed, empathy and compassion and huge gratitude for my body who has done such an incredible job, both in the surviving and pushing through AND in the refusal to do that any longer.

The wisdom in the collapse because enough was enough. This new, slower, more reluctant body is my friend and companion too and being frustrated and angry at her for not functioning as she “should” was misdirected anger. The rage and grief now can go where they rightfully belong.

In my own time

As I imperfectly release perfectionism, I’m catching up with where I am really at. Even with being signed off work two years ago, I still have very high expectations of myself, but this is beginning to shift noticeably in the last few weeks as I take subtle layers of pressure off myself that I hadn’t previously realised was there. The Visible heart monitor and app is helping by showing me what’s realistic for my current energy envelope, what takes energy even when it appears to be “nothing much” (washing dishes, walking very short distances, even standing), and how “stacking” activities (doing several things in a row, even seemingly small ones) as well as emotional stress are two of the primary immediate triggers for flares the next day.

As I work within the loose structure I’ve created for myself, containing alternating periods of light activity and rest, I’m beginning to let go and trust the process instead of fighting it. Something has shifted in that I’m less inclined to see my health as a puzzle to solve, which I’m going to get a medal for figuring out, the way I got gold stars and A’s in school as a way of proving my worth.

I’m not wrong, bad or pathetic or less than if I can’t “get there”.

Even if I never have a busier or more outwardly productive life than I have now, and don’t have any more energy than I do now, that’s OK. And being angry at myself and my body for not being able to perform in the way I want it to is anger better directed at all the f***ed up sh*t that made life so inhospitable to souls like me.

No doubt, since this journey is not linear, I’ll continue to be thrown back into the perfectionist attitude from time to time. But I’m getting an imprint of this:

It’s really OK to be living my days the way I am doing.

And I’ve never allowed myself to do that.

It’s absolutely necessary, because I cannot heal if I’m just continuing to perpetuate the same things internally that happened to me in my formative years by being hard on myself.

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In the words of :

This is what we’re really unravelling.

Not just the pain,

but the patterns we built to survive it.

The masking.

The performing.

The quiet belief that we have to earn our place in the room.

And something shifts when that drops.

When you’re met… as you are.

I’m trusting my body knows what she is doing, and that she has not only done what is necessary all along, but will continue to do so.

It’s my job to listen, and be patient as I enter deeper into this dialogue with my mind-body-soul that has been whispering, then getting ever louder. To listen, and be patient, even if very little seems to change day to day, and even when it seems like I’m going backwards.

The fear in the symptoms and the fear OF the symptoms

I can’t talk about anger and grief without also talking about fear. In this drastically reduced lifestyle, as I make space and stay with my “new, slower, more reluctant body” and stop running from all that has been stored up, the emotions and stored survival responses are slowly surfacing and being felt.

These are glimpses from the past couple of weeks:

I was in a CFS flare, lying down resting, when tremoring began in my left leg. I let it continue. Other times, my legs feel restless and my body twitches, as if it wants to run. I let it move, even if it’s in bed.

During a yoga nidra, which I usually find so relaxing that I fall asleep, I felt strong embodied emotions that harked back to a traumatic time in one of my relationships. As I fell asleep, I felt suddenly as if one of my cats had landed on me, and jumped, but there was nothing there. When I came to, I felt gripped with fear. A fear that I knew was of the past, yet felt so present right then and there.

My latest surge of CFS flares - and a worsening baseline - came after a car accident in September 2025, which those of you who’ve followed me for a while have already heard a lot about. I’m only now realising the possible link: that my body has felt profoundly unsafe driving and going outside the home ever since, and I’ve started to wonder if it’s been amping up the symptoms to keep me safe inside. Even after several sessions of bilateral processing trauma therapy focused on the accident, I still sometimes need to pull over and breathe when driving, and my social life is practically nonexistent. The fear is masked by my symptoms, and I feel safest when in my bed.

Maybe, even there, something is changing, as I drop into deeper acceptance of where I am. Yesterday, I went into town to do a couple of unavoidable errands and treated myself to a coffee and cake, a rare outing for me. I knew it would tire me out, but instead of feeling locked inside my own world, self-protective and white-knuckling my way through, I noticed more curiosity, openness and mindfulness coming online. I enjoyed watching people talk to each other over their dogs and delightedly picked up a Make-your-own-Bohemian-scrapbook kit in a “Free” pile outside someone’s house.

Symptoms kicked in with force towards the end of my (decaf) coffee and the usual desperation to teleport home began, but I just took it one step at a time, tried not to panic, and trusted. I drove home without music, just breathing, and went to bed without guilt or shame when I returned, happy I’d managed a couple of hours out.

Written in the context of recovery from trauma and mental health impacts, this quote from Lisa Wall of “SHE RECOVERS” in “Recovering From Overcoming” spoke to me:

“…being impacted by trauma is not evidence of weakness; it is evidence of humanity. One of the most liberating shifts in recovery may be releasing the belief that healing must mean overcoming trauma or the past.

Healing may instead look like telling the truth, receiving support, being witnessed, allowing joy, building community, choosing rest, getting to know ourselves, or making peace with being unfinished.”

While tracking patterns to identify known causes can be helpful, I find more empowerment in identifying what is next. I ask myself how I can reach for more aliveness, nourishment and self-compassion right now, regardless of symptoms.

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Things I’m doing to nourish myself - and a reframe

• Free 25-minute somatic practice and IFS (Internal Family Systems) journalling sessions on a wonderful group for those living with chronic conditions and on the healing journey. I love these because they are drop in, cameras off, and mostly less than half an hour long. If any of you want to join, drop me a DM.

• Lots of reading, especially in my garden overlooking the field. I just finished the wonderful “The Dictionary of Lost Words” by Pip Williams which made me cry and feel immense gratitude to the women who paved the way for women’s rights in the early 20th Century, as well as appreciation for different ways we can make a difference, other than being a front-line activist (especially relevant to those of us who are more “words” people than “protest march” people, or who live with disability).

  I’m now reading “The Tyranny of Lost Things” by Rhiannon Lucy Cosslett, which somehow manages to indulge both my 1970s nostalgia (despite having been born in 1980) and my nostalgia for my 20s, complete with mushroom trips and endless parties. I’m kind of glad I’m not back there now, just for the record! I quite like being clear-headed these days :)

If you’re reading anything good, I’d love to hear!

• A 4 week online singing for wellness course, led by the magical Tarisha, one of my biggest singer-songwriter inspirations, who teaches and inspires from her 16-year journey with serious health conditions.

I leave you with this reframe, inspired by the course:

Being well is not about having a perfectly functioning body. It’s about:

Living well.

Loving well (ourselves first and foremost)

Living with joy, gratitude, receptivity, love, even amidst the challenges.

How we think about and relate to our health and illness, and how we talk to ourselves, can make the biggest impact on our day-to-day sense of wellness. While CFS is real, and the impacts are real, I know that my fearful and self-judging thoughts in the context of it cause me the most suffering.

And it’s absolutely not about a spiritually bypassing “Positive Thinking” obsession, controlling every thought and feeling. A well person embraces all that is happening, with self-compassion, including the fits of anger and frustration and When the f*** is this going to end?

Over to you. I’d love to hear where you’re at on your healing journey, whether you’ve been treading this path for decades or a few months. What moves in you within the themes of what I’ve shared, around suppressed emotions, self-talk and adjusting expectations of one’s self, or anything else?

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One of the reasons I stopped talking to a family member about my neurodivergence was that she began saying things like, “But of course you would see that about yourself, because you’re reading about it so much.”

Her comment suggested that I was ‘imagining’ I had certain traits because I was immersing myself in relevant research. A bit like the ‘Medical Student Syndrome’, where medical students begin to suspect they have every disease under the sun because their studies focus them in that direction.

It was an invalidating remark and it had the predictable effect of shutting me down. More than that, it made me doubt my joy at connecting with other autistics and ADHD-ers online and learning more about neurodiversity. 

Yet, possibly like you who are reading this right now, the first 20 or so articles I read from neurodivergent authors gave me such a powerful feeling of relief and validation. Finally - My Tribe was the feeling.

There is nothing like the impact of reading or hearing what your inner experience has been all along — an experience you have, until now, felt totally alone in. Having words for the unsayable, the things you thought were just evidence of your own wrongness.

If I had listened to this family member, and more importantly, to my own Inner Critic triggered by her observations, this would have not only been isolating, but it would also have set me right back to where I was in 2021. In those grim, lonely lockdown times, after discovering my autism, I went into denial about my neural wiring and tried to function like a neurotypical again. Pushing, striving, trying to keep up.

This led to deepening burnout and, I believe, was a huge contributing factor to the worsening of what until then had been mostly mild Chronic Fatigue Syndrome.

Lately, however, I have wondered if there is a kernel of truth to her comment. 

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As spring emerges, there’s a different part of me that comes alive and I can go outside more, emerging from the very long, very wet Welsh winter.

It’s a part that’s optimistic, hopeful, young, creative, and inspired.

When I was a little girl, nature was my first love — and in my world, nature and creativity were always inextricably linked.

Songs and stories streamed through me as I walked up and down my garden, communing with the trees and playing flower faeries in the nasturtiums.

I was devastated when the little patch of ‘woods’ at the bottom of the garden was felled to create a tidier garden. Maybe a neighbour had complained that the high trees blocked their view, but I only knew I felt a deep sense of wrongness about it, which I amplified in my late teens by protesting pine felling with a group of friends at the roadside.

I was no activist ‘tree sitter’, but later, when I went to university, I would regularly escape the busy campus to soak up the sense of peace and belonging among the native Silvertrees near Rhodes Memorial, trees almost certainly unique to Table Mountain, the beloved blue backdrop of my childhood in South Africa.

A children’s book and several poems were birthed out of walking in the little-known Arboretum near Kirstenbosch, where I sought sanctuary when my stress-related eczema went rampant.

This peace was a feeling elusive to me in my other contexts. Growing up in a household full of tension and conflict, bullied at school for being a skinny, pale bookworm. and struggling to connect with my peers in the midst of undiagnosed autism and misunderstood ADHD, I found the relief of being alone in nature deeply healing to my troubled mind and frayed nervous system.

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Thanks for opening Not Always Neurosparkly: Musings on AuDHD Life and welcome to my world. My writing explores how to live an authentic, self-honouring and relational life with neurocomplexity and variable energy levels. This is your Weekly Wanderings post, fully available to my paid subscribers, who can also access my archive of 70 + posts to go through at their own pace. Every single paid subscription helps to sustain the ongoing work of curating this neuro-affirming space in a way that works for my nervous system and hopefully others’ too.

Note: If this post cuts off in your email inbox, which it likely will, just click on the post title at the top to read it on Substack itself.

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It’s easy to focus on where I want to be and how far that can feel from where I am right now (which, for the past two months, has been a very sobering reality check on my current health).

But I’ve decided to take ’s recent invitation as a prompt to reflect on how far I’ve come, and what’s helped me to make these things possible.

In the process, I re-discovered some touching stories and surprising links.

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Thanks for opening Not Always Neurosparkly: Musings on AuDHD Life and welcome to my world. My writing explores how to live an authentic, self-honouring and relational life with neurocomplexity and variable energy levels. This is your Weekly Wanderings post, fully available to my paid subscribers.

If my essays support your self-discovery, you might want to consider becoming a paying member to support my writing and gain full access to my exclusive weekly posts (my most up-close-and-personal work) plus my archive of 70 + posts which you can go through at your own pace. Every single paid subscription helps to sustain the ongoing work of curating this neuro-affirming space in a way that works for my nervous system and hopefully others’ too.

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This week’s Wanderings will take the form of a list of glimmers that have landed in my awareness on my neurodivergent/chronic healing journey this past week and a bit of a longer exploration around the role of autistic special interests in my life.

These are the things that have felt like movement in a positive direction, even if they haven’t always felt good:

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Thanks for opening Not Always Neurosparkly: Musings on AuDHD Life. My writing explores how to live an authentic, self-honouring and relational life with neurocomplexity and variable energy levels. This is your Weekly Wanderings post, fully available to my paid subscribers.

If my essays support your self-discovery, you might want to consider becoming a paying member to support my writing and gain full access to all that happens in this newsletter! As well as the full exclusive weekly posts (my most up-close-and-personal work), you’ll unlock my archive of 70 + posts which you can go through at your own pace. Every single paid subscription helps to sustain the ongoing work of curating this neuro-affirming space in a way that works for my nervous system and hopefully others’ too.

It’s been a big week. On the family front, this happened.

I never did hear an acknowledgment of what I’d spontaneously shared with my mother. My mom’s repeated lack of response to the topic of autism, whether in relation to me or other family members – as if it’s a dirty word – while happily and sympathetically acknowledging my ADHD and chronic fatigue, is both frustrating and fascinating to me.

On this occasion, for the purpose of some medical forms, I’d asked her about whether my story of being diagnosed with ADD as an eight-year-old was accurate. I’d been told many times that I was diagnosed Ritalin due to being “hyperactive” in school and I couldn’t see how that could have been the case without a diagnosis.

It turns out that ADD hadn’t even been mentioned, and that she and my dad attributed my “hyperactive” behaviour to side effects from asthma medication. She told me that at home I was content and self-directed, happily engaged in my own creative activities, which corresponds with my own memories. It was only at school that I was “disruptive”, finding it impossible to conform to instructions and wanting to do my own thing.

(I love that little girl).

When, as this discussion unfolded, she mentioned my nephew’s “highly sensitive” behaviour as part of her diplomatic recognition that lots of people in our family, including my ADHDer cousin, are “different”, I couldn’t resist mentioning, not for the first time, that I see autistic traits in him.

Again, as with the last time I mentioned my nephew’s likely autism, she acted as if I hadn’t said the word “autistic”. In case she thought I was pathologising him, I quickly added that to me, this is no bad thing (with my mom, I have to keep it quite basic). I said that I identify as autistic, something I’d avoided saying to her until then.

On this particular day, I just couldn’t be bothered to give half-truths anymore.

I explained that I see a lot of autistic traits in my childhood, and that to me it’s just a different way of being. When she started to become defensive, saying, “We didn’t have Google back then, we didn’t know anything,” I made sure to tell her that I knew she and my dad had done their best with the limited knowledge then available. I acknowledged that they had always supported me (a simplification, but true when it came to school issues such as bullying from peers and teachers), and that I was glad they hadn’t allowed me to be put in a “special school”, as she put it, which my teachers, not knowing what they were looking at, had been strongly advocating for.

Still, not a word about the autism.

It hurts and puzzles me that she doesn’t acknowledge this absolutely central part of me and my identity, that I’ve spent the past five years exploring, but I also know better than to take it personally. I imagine she’s scared. I imagine she might have some outdated and stereotyped ideas of autism that prevent her from acknowledging my talking about it, but she won’t even allow the conversation to get to the point of us discussing that, so I may never know.

And I’m also sure that, having obvious autistic traits herself, it might be too threatening to go there. So I leave it be, because I know better now than to grind an axe where it will only cause me harm.

A couple of days before this conversation with my Mom, which was both illuminating and dead-end-ish, I had a strong experience of connecting with my life force and a respite from my CFS symptoms – and I think this is partly why I was able to care less about her response than I usually would.

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Creativity is a vital topic in the lives of many sensitive, neurodivergent folk. We often turn to it for relief, for decompression, for self-expression, and to connect with others in ways beyond neurotypical or “in the box” ways.

I’m this month’s guest in fellow AuDHDer ’s interview series, How Do you Feel it All? where we talked about creativity, connection, nature, relationships - all the good stuff. In her newsletter, The Art of Feeling it All, Sophie writes about creative relationships, belonging, and leaning into the fullness of who we are.

In the interview, I reflected on:

• How my creativity supports me in navigating a neuro-normative world

• What my creative practice looks like

• Why creativity is vital to me as someone with a chronic health condition

• How it connects me to something beyond myself

• Creativity in relationships as someone who relates “out of the box”

and more!

You can check out the full post here. I would love to read your responses!

The Art of Feeling it All

How Do You Feel it All? An interview with Morgana Clementine

Thank you for opening The Art of Feeling it All, a newsletter about creative relationships, belonging, and leaning into the fullness of who we are…

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3 months ago · 1 like · Sophie Willow and Morgana Clementine

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Thanks for opening Not Always Neurosparkly: Musings on AuDHD Life. My writing explores how to live an authentic, self-honouring and relational life with neurocomplexity and variable energy levels. This is your Weekly Wanderings post, fully available to my paid subscribers.

If my essays nourish you, please consider becoming a paying member. As well as the full exclusive weekly posts (my most up-close-and-personal work), you’ll gain access to my archive of 70 + posts. Every single paid subscription helps to sustain the ongoing work of curating this space at a pace that works for my neurodivergent and chronically fatigued nervous system, as someone who’s unable to work in the conventional sense.

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Back in the limbo land time of 2021, I did a women’s business and life coaching course in the hopes that I could turn my life around. It was during this period that I (coincidentally) came to the realisation that I was autistic, having “remembered” about my ADHD a few years prior to that (since I was diagnosed as a child and nothing was done about it, nor was it ever mentioned again).

The coach used to talk about overfunctioning and underfunctioning a lot. She explained that it was important to strike a balance so that you were neither overdoing it nor avoiding and dissociating from things that would progress your goals and values.

I remember going through a concerted effort to reduce all the ways I was doing the former and to correct the latter, all while having no idea how to work with my AuDHD neurotype or even having heard the term AuDHD at that point.

The coach and her assistants were mystified: Why was I still so tired? Why was it not working? Why couldn’t I get out of this prison seemingly of my own making?

We couldn’t work it out, because we were looking at the obvious things: what was on my to-do list, whether I was resting enough (this was the year my daily yoga nidra nap habit started), how well my romantic relationship was going.

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I was surprised by how much conversation was generated by my last essay, which I thought was very specific to my own experience.

Perhaps I shouldn’t have been surprised. Three of the themes I touched on —inclusivity, belonging, and needing longer to transition and “land” in a space — are relevant to so many of us with different neural wiring and life experiences from the majority.

I ended the article with a call to facilitators of conscious dance and other personal development spaces to educate themselves about neurodiversity so that their spaces can be more inclusive.

It’s important to remember that however much ‘permission’ and ‘authenticity’ is encouraged, these are environments in which there is a power relationship and where participants have little control, needing to adapt to whatever is going on. Those of us who are autistic or have other neurodivergences, including CPTSD, have sensory sensitivities and needs that can make this a big stretch.

For participants, this can be a challenge worth navigating and getting more fluent in. I have found huge value in learning how to stay empowered in group situations, taking responsibility for my own self-awareness of my needs and boundaries. At the same time, we need awareness and support from facilitators to make this experience of empowerment more accessible and to normalise neurodiversity.

I have hope that this is beginning to happen more and more. For example, I was surprised when a 5Rhythms teacher came up to me during an evening dance class and whispered to me that she was going to put the lights off shortly. I asked her why she was telling me, in particular, and she said, “Because I know you have sensory sensitivities.”

After some reflection, here are a few ideas on how this could look:

1) Give people the benefit of the doubt with their ‘ways in’ to the dance

This is largely about respecting the extra transition time that neurodivergent people may need because of their different information processing needs. Many of us need significant space and time before we can fully engage. My request would be to let us be, and don’t come into our space to tell us how we should be doing this. Obviously, if someone is looking really distressed, you might want to offer support, but this can be done in a respectful way, asking permission (e.g., keeping a certain distance and, of course, no hands on the body unless invited).

A neurodivergent friend (autistic/ADHD) told me that a conscious dance teacher would regularly tell him to get back on the dancefloor when he had stepped out for a short period of time. I witnessed another ND friend being told by a teacher that she “wasn’t doing Chaos correctly” (Chaos is the name of the third rhythm in 5Rhythms) and she was so upset that she ended up leaving the class. Luckily, her feedback after the fact was well-received and the teacher was willing to learn from the experience.

Strong sensory issues can impact our experience and I don’t think it’s helpful to assume that someone is just ‘not engaging’ and needs a push back in. A particular song or style of music, for example, may be experienced as a painful sensory assault and stepping back is needed to self-regulate. Trusting the dancer’s own process and not interfering in it is a vital part of good facilitation.

In personal development workshops, I have experienced being forced to go back in and continue hugging during a hugging exercise in which I became overwhelmed (after 10 minutes of long hugs with various people).

I’ve come to trust that I know when I am just ‘resisting’ and avoiding my growth edges, and when I am needing to self-regulate because I’m dangerously close to being out of my window of tolerance. I wish the facilitators had been able to trust me to do that.

2) Turn instructions into invitations

In my experience, a lot of facilitators do this already. Typically, they are those who are more ‘trauma-aware’ and know that people who have experienced boundary violations through abuse particularly need to feel at choice about what they do. Abuse survivors are also more likely to override their own boundaries if they are told to do something by someone in power.

I think this is just as relevant for those of us who are neurodivergent and often dealing with a level of demand avoidance or PDA — and the overlap between neurodivergence and trauma is also a fascinating topic of investigation, which I explored here and here.

This way of wording instructions could sound like, “If it feels right/ if you’re ready, take a partner,” rather than “Now take a partner”. This gives everyone an opportunity to feel into what they want in that moment. I would suggest following this up with a suggestion that is also relevant to those who have chosen not to partner.

Without this added instruction, those of us who feel more aligned with staying in a solo dance are more likely to feel left behind and left out. The rest of the group goes on a journey we aren’t a part of, because all of the following instructions are irrelevant to us.

For e.g., one 5Rhythms teacher I know will say, “If you’re dancing alone, dance with the space as if it’s your partner” or “You might want to dance with the light coming in the window.”

3) Support partnering to be more inclusive

I have been to conscious dance classes where it has felt more like a dating scene (or ‘meat market’, as the crude expression goes’) than a space to move and meet as our authentic selves. The invitation to partner at specific points prompts people to cast their eyes around the room for the person they most want to connect with. Often, the young, attractive, outwardly confident people pair up and others, who fit outside our society’s norms of desirability and social presentation, are skirted around.

Even without saying a word, neurodivergent people are often read, on a body language and posture level, as ‘different’. Studies (such as this one and this one) have shown that negative attitudes towards autistic people, and social exclusion as a result, are a real problem.

One neurodivergent person I talked with found it helpful for the teacher to say something like, “Don’t go out of your way to find someone, just choose who’s in front of you.” I also find it a relief when a teacher says this, because I don’t have to headf*ck about who to choose, whether I’ll be chosen, and whether I’ll be rejected.

There’s a simple trust and flow in this. Of course, consent remains paramount and everyone should feel able to say no if it’s really someone they feel uncomfortable or unsafe to partner with. This is something that could perhaps be explained at the beginning of workshops, but is more difficult to do in drop-in classes, where the atmosphere is more casual and dancers tend to drift in over a period of half an hour. I appreciate that the facilitator for a local upcoming ecstatic dance session has made it clear that the doors close strictly at a certain time after which the opening circle, with all the guidance, will take place.

Some 5Rhythms teachers gather the dancers in a circle for some basic guidelines and instructions after the half-hour warmup and after the doors have closed. But this can also be an unwelcome interruption to those who, like myself, have just started to get into our own self-connection in the dance. It’s yet another transition that we have to adapt to and move in and out of.

4) When giving instructions, don’t assume anything

As an autistic person, when I communicate, I am complete to a fault, to try and avoid misunderstandings. In contrast, I often find vital information missing in others’ instructions.

Woven into many sets of instructions are are assumptions based on ‘common sense’. This assumes that everyone thinks the same way and has come to the same conclusions, generally speaking. I highly appreciate a concise, clear yet thorough explanation from a teacher or facilitator, paced in a way that I can take in the words and identify any points I need further clarification on.

When activities or exercises are being explained, reading between the lines and figuring out what’s required of us can be taxing. There can be shame and embarrassment about needing to ask a clarifying question when everyone else seems to just automatically ‘know’ what to do.

In contrast, I was impressed at a recent workshop by how much space and time the facilitator gave to questions from another neurodivergent person who was particularly curious. He did not get impatient, but gave space for the participant’s concerns, was reassuring, and offered a space after the session to explore things further if need be.

5) Give regular movement breaks between bouts of stillness

In contrast to the movement spaces, this one is for personal development workshops (or any workshops!) where a lot of sitting and listening or concentrating is required. It’s the corollary of the need to sometimes be still in a movement class, according to what our nervous systems need at the time.

At a week-long neo-tantra workshop, I observed how those of us who were neurodivergent (or suspected we were) were in clear physical discomfort, even pain, after an hour-long sharing circle or by mid-way through hours-long ceremonial touch processes. Some of us, hitting desperation point, were getting up to stretch and walk around while the workshop went on.

There are two key strains on the system of someone with ADHD and, in many cases, autism, in those kinds of settings. One is the sensory stimulation and executive function elements of prolonged listening. Taking in everyone’s words and body language, and dealing with all the (often high velocity) thoughts evoked in our own minds takes a lot more from us than it does from neurotypical brains. Quite simply, we reach capacity — feeling ‘full up’ — much sooner than others.

The other strain is the proprioception factor. If our bodies are still for too long, in the same position, it can be more difficult for us to feel our bodies and stay connected. This gets very uncomfortable and almost unbearable at times. “Many Autistic and ADHD people crave proprioceptive input to regulate their responses to sensory over-stimulation” according to Dr Neff, an AuDHD psychologist, in this article.

What can help?

• A movement break to get up and dance or shake, even for 5 or 10 minutes, when there has been more than 45 minutes or so of sitting still.

• Varying activities so that there are not many hours or whole days of one type of activity, can make a huge difference in supporting us to stay engaged. For example, a turn-taking massage activity, followed by movement, followed by a sharing circle.

Having read all this, you may be wondering: Why not just ask for these accommodations in the workshop?

These are the barriers.

As a late-identified neurodivergent person, I tend to question the validity of my need. Going through the state school system, for example, has conditioned me to accept all kinds of uncomfortable environments that don’t take into account my needs. In that moment, too, the perception is that most people are doing fine with it, so my default is to adapt, with the underlying belief that my comfort doesn’t matter.

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Asking also disrupts the flow of the workshop and draws attention to one’s self — and as I discussed in my previous article, “Autism on the dancefloor”, being looked at can be very uncomfortable, especially when it’s through a lens of potential ‘What’s wrong with you?’ Others might not be thinking this at all, but the fear of it happening (as it undoubtedly has before) is a very real block to speaking up.

If there is a lot of information or other exercises to fit in and no time for movement breaks, the facilitator could emphasise at the outset of the workshop that participants are free to attend to their needs by moving and stretching whenever they need to. This would help the physical tension/proprioception factor, but not so much the cognitive load of continuing to take in so much information without a break.

If facilitators are aware of these potential issues before a workshop or class and can weave in some options and accommodations beforehand, this would help neurodivergent people feel more welcomed and greatly improve their ability to take in the learnings and benefit from the experience. On intake forms for workshops, questions should be asked about additional needs such as neurodivergent-related needs.

Do you have any more ideas? I’d love to hear them! If you would benefit from these tips in the spaces you participate in, or know others who would, do share on.

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We’re supposed to ‘dance as if no-one is watching’. But that’s not always so simple, especially when you’re autistic.

And I’m talking especially here about “conscious” dancing, where spaces are intentionally held for dance that are alcohol and drug-free.

I have been an avid 5Rhythms dancer since 2009.

This is a movement meditation practice where you simply show up, dance to a ‘wave’ of music encompassing various emotional states and tempos, and through the process get more in touch with yourself, your body, your feelings, and others.

Initially, I found this practice liberating, because the atmosphere is so nonjudgmental and accepting. I didn’t have to get any steps right or present in any particular way. Dancing wave after wave and doing deep dive retreats helped my embodiment process enormously.

Yet, there have always been challenges with dancing, and these have increased since I have no longer had the funds to do deeper dives (with the safety of a closed group over time) and have to rely on drop in classes, which tend to be hit-and-miss for me. More recently, I have discovered that these challenges are related to being autistic.

Please don’t look at me

(One of my partners actually bought me a sketchbook with these words on the cover, accompanying a grumpy-looking cat).

One of my least favourite things is to be watched while doing almost anything, which is common with autistic people due to factors like previous trauma, masking, and internalised ableism. I play music and sing, but much more often with others than to others. When I first sang at an open mike, I was shocked to discover how much more difficult it was than singing in a setting where people could hear me and join in if they wanted, but no-one was particularly looking.

We’re supposed to ‘dance as if no-one is watching’. But in reality, in a 5Rhythms class, there will be times when my eyes catch another’s. There are moments when the teacher, whose job is to hold a safe and encouraging space, will also be looking at me.

It can take me over an hour to get over the self-consciousness of this and to stop seeing my body movements as if from the outside. In highly masked autism, it’s common to be hyper-aware of one’s facial expressions and body language when interacting with others, worrying about ‘getting it right’.

It usually takes me a long time to actually enter into my own experience and surrender to the music. Just going by how confident and fluid the other dancers often look, I feel as if this takes me longer than the majority.

Sometimes, and more frequently lately, this shift never happens, and I go home despondent and disappointed.

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Connection vs Disconnection

The average neurodivergent person has had thousands more negative interactions than a neurotypical person by the time they reach adulthood, and the dance floor is one hell of a vulnerable place. Partnering with others on the dancefloor is particularly perilous.

I have had some beautiful, enlivening and inspiring dances with others in 5Rhythms classes. But still, even after 15 years of this practice, when the dreaded words issue from the teacher’s mouth: “Now, take a partner”, I have to face the fear of rejection that comes with Autism and ADHD-related RSD (Rejection-Sensitive Dysphoria) and C-PTSD (Chronic Post-Traumatic Stress Disorder).

I am prone to leaving my own dance behind as I try to connect with the other person. I can only seem to connect with them by giving them attention, but giving them attention takes focus away from my own proprioception — the sense of what my own body feels like and how I experience my sensations from the inside. This is something that is often more difficult for autistic folks.

My dance can easily start to mimic the other’s, if I and then I feel like I’m doing it wrong. But on the other hand, if I persist with staying in my own natural movements, the whole exercise begins to seem pointless because I might as well be dancing on my own.

I can end up feeling more alone than ever, especially when I see, out of the corner of my vision, others creating seemingly effortless partnered dances while smiling, enjoying themselves and still doing what looks to me like ‘their own dance’.

When the teacher tells us we can move on, I often exhale a huge sigh of relief. The phrase I most love to hear is: “Now go back to yourself”. Being with myself is always easier and far less complicated.

I was recently discussing with a fellow AuDHD friend and dancer that we often feel, by the end of a dance class, a strong sense of isolation and a frustrated, sad longing for connection, while also knowing that we have unconsciously blocked it at every turn.

I remember on many occasions looking around at the end of a class (since I often have my eyes shut for much of the time) and seeing almost everyone in connection, often in big groups and ‘cuddle puddles’, yet I have somehow missed being part of this — and it doesn’t always feel like a choice.

Unless I know people well, I seldom spontaneously partner with others in a class (outside of a teacher’s invitation), though I often see others doing so. I am fairly at ease in verbal environments, but take away the cues of the scripts of speech and I’m a little lost. Because of the common autistic difficulty with reading certain social cues, I find myself wondering how the dancer who approaches another dancer just knows whether, when and how to approach.

Often, I watch this process happen and can clock zero cues that Person B is open to dancing with Person A, yet Person B seems to welcome the approach and they effortlessly start moving together. Of course, I don’t know what’s going on in their heads, but I do know that I wouldn’t feel confident approaching someone without more obvious cues that it’s welcome.

It’s far too risky!

I remain curious about how to engage with others on the dancefloor in ways that feel good to me, and also accept that most of the time, I prefer to be in my own space, connecting with my own body and the music. I am comparing myself to others far less in this regard, recognising that my own needs and preferences are just as valid as the dominant ‘norm’.

Honouring my own process (to use the famous hippie saying)

I love 5Rhythms and think it’s a powerful and life-changing practice, and am very grateful for the community I’ve met through it. Yet, now that I’m aware of my needs as an autistic person, and am in a process of unmasking my autism, I am reluctant to be in a space where teachers come up to me and, however well-intentioned, question or interrupt my process around what I need to do to be resourced and comfortable.

This has happened in all of the following situations:

• When I took time out to sit on the side and gather more energy before entering the dance.

• When I was in a freeze state and slowly, gently coming out of my head and into my body, not quite ready to fully engage yet.

• When I was overcome by emotion (in the form of tears) and needing to pause all movement to allow that.

Sometimes, I prefer more unstructured dance spaces, like Ecstatic Dance, where I can dance to my heart’s content with no one telling me what to do. There is usually little to no instruction in Ecstatic Dance. But the downside of that is that I can more easily get lost in my head and feel totally disconnected from everyone in the room, so I do return to the gentle discipline of being in my body that 5Rhythms invites, while taking these steps to support myself:

• Taking my time to orient to the room. Turning up 5 minutes early (at least) where possible, to look around and gently warm up, or sit on the side sipping tea without pressure.

• Lying down or sitting down when I need to, and keeping one or more body parts gently moving as I do so.

I want to invite teachers and space-holders to educate themselves about neurodiversity and be aware that a not insignificant proportion of their participants or students may be neurodivergent, with different needs and ‘ways in’ than others. Here is my follow-up essay to this one, containing guidance for space-holders to make their dances and workshops more accessible to neurodivergent (particularly ADHD and autistic) folks.

How do you feel on a dancefloor, without drugs and alcohol? Do you have “ways in” that support you?

What irks you about how spaces are held, and what would you like to see happen differently? Alternatively, what really works for you in held/facilitated spaces?

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Three days ago, I took a walk to try and process the fight-or-flight energy that was coursing through my body after getting drawn into a debate on Facebook around the latest controversy in the neurodiversity world, centred on retired autism “expert” Dame Uta Frith’s recently declared damaging views on autism. If you’ve not yet heard about it, and about how the neurodiversity community has responded, I link to several articles below.

I am usually very cautious about wasting my limited energy on arguing online, but as a neurodiversity advocate, I just couldn’t turn away from this one. Yet despite the green nature around me, I still couldn’t drop it. I was fuming, and underneath that was the old grief and self-doubt: Are we [neurodivergent and disabled folks] once again going to be disbelieved, gaslit, and refused what we need because we’re being told we don’t really exist?

And, even deeper and more painfully: Are they right after all, and there’s just something wrong with me/us for not being able to fit into society and effortlessly “do the things” that others can apparently do?

It’s a familiar story, whether it relates to having chronic illness (in my case, chronic fatigue), neurodiversity, or any type of dynamic disability. And on a week where I’ve spent a lot of time in bed and am already anxious about my first appointment with a new doctor to discuss my health situation, to hopefully get a chronic fatigue referral, dreading the possibility of dismissal and gaslighting, I didn’t need it.

Feeling “not disabled enough” because of widespread ableism, yet nonetheless having the lived experience of being disabled, is a common experience among those with invisible disabilities.

I’ve been wondering what I can possibly add, here on Substack, to the raging debate on Frith’s words, which recently joined the problematic chorus of voices in the backlash against the neurodiversity movement.

Her powerful voice has contributed to a harmful narrative that tells late-diagnosed/identified, often (but not exclusively) female autistic folks that our very identity is up for question. That the things that help us aren’t really that important to consider because we are not disabled enough and can function perfectly well; no matter the lifelong cost in the form of mental and physical illness and burnout, and no matter the fact that we often aren’t really functioning at all.

I know that many people in the late-diagnosed autistic community are very distressed by this, even as some parents of autistic children with particularly high support needs are celebrating Frith’s statements, believing that the support needs of autistic adults who can (sometimes, and with accommodations) work, have relationships or live independently directly clash with the urgent support needs of their families.

Tragically, it becomes a competition about who is truly vulnerable and who deserves support, rather than uniting against a fundamentally flawed system that rarely has the best interests of people at heart. This week is Neurodiversity Celebration Week and yet the wider community is once again divided.

I know I’m not alone in moving through rage and grief in response to all of this, knowing it could well set back progress for autistic people. After lifetimes of being misunderstood and disbelieved, this kind of messaging can hit us right in the place where Imposter Syndrome so often lives, as once again we are told No, you don’t belong, and you don’t have a right to have your needs considered.

I previously explored one aspect of this here, writing about one of those moments where my experience doesn’t match a stereotype of autism, partly because I’ve been masking my entire life:

There are so many writers on here and elsewhere who have done a stellar job of tackling Frith’s points one by one and debunking her troubling claims, so I won’t try to replicate this. For example, Frith denies scientific proof of autistic masking as a phenomenon despite the fact that there is a whole body of evidence around it (see ’s second article below for more on this).

Here are some excellent pieces from thought leaders and therapists in the neurodiversity field that I’ve read over the last few days, covering a variety of angles:

When the Research Gets Weaponised Against Late Autistic Discovery -

An Autistic Response to: Uta Frith’s “why I no longer think autism is a spectrum” -

Autism Spectrum “Disorder” was never designed to include us - no wonder the gatekeepers are upset - Leanne Maskell.

Autism Is a Spectrum: A Response to Uta Frith – .

When Autism’s “Spectrum” is Questioned: Why the Science Points the Other Way - .

Who owns knowledge? Neurodivergence, power, and the colonisation of lived experience - (a fascinating piece on the wider context around Uta Frith’s views)

When the Architect Blames the Building: Uta Frith, Epistemic Authority, and the Politics of Diagnostic Gatekeeping - (for paid subscribers - well worth it! - with a free preview)

The Science Frith Said Doesn’t Exist: What the Research on Masking Actually Shows - (same as above in terms of access).

These neurodiversity advocate voices on social media also have some very valuable things to say on the topic:

Helen Buzdugan

Spectrumy

I want to talk about the implications of what Frith has said in terms of both my own personal journey and where this all might be heading for us as a society.

Paid subscriptions give me the space to write slowly and thoughtfully, with care for neurodivergent nervous systems — including my own. For £7 a month, you can support my writing and unlock my Weekly Wanderings as well as my entire archive of essays (70 + posts).

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Thanks for opening Not Always Neurosparkly: Musings on AuDHD Life. My writing explores how to live an authentic, self-honouring and relational life without glossing over the challenges that come with a different neural wiring and variable access to energy. This is your weekly Wednesday Wandering, fully available to my paid subscribers.

If my essays nourish you, please consider becoming a paying member. As well as the full exclusive Wednesday Wanderings posts, you’ll gain access to my archive of 70 + posts. Every single paid subscription helps to sustain the ongoing work of curating this space at a pace that works for my neurodivergent and chronically fatigued nervous system, as someone who’s unable to work in the conventional sense.

Like many of us late-identified neurodivergents, I’ve been on a gradual unmasking journey for a few years, as I explored specifically here, here and have woven through many of my other essays.

This week, I’m a little embarrassed to say that I had the thought: I don’t want to completely let go of passing as non-autistic.

Hear me out.

I’m proud of being autistic, and also…

Passing for borderline “normal” has got me through and kept me safe (and I recognise this is a privilege many autistic people don’t have, as well as one that comes with a cost). There are parts of my identity that are heavily attached to that.

Growing up, the minute I detected disapproval or ridicule, I would change course. I never quite managed it completely – if you know, you know! – and I now embrace being weird and wonderful in many ways (in the best sense of the word “weird”).

But I’ve somehow more-or-less fit into neurotypical society through acting a certain way, nodding and smiling at the right junctures, maintaining eye contact even when it hurts and not moving my body in certain ways. Certainly not being seen to stim.

And I’m starting to wonder what the cost of that might be.

Autistic advocate Viv Dawes captures the dilemma well:

Not stimming is a big part of this suppression of my autistic nature. Although I know that unmasking is situation-safety-dependent, and we shouldn’t expect ourselves to unmask across all contexts, I still feel I have a long way to go with this key aspect of letting myself stim for my own wellbeing.

Stimming is important for both autistic and ADHD people to regulate their nervous systems in the face of sensory stimulation that can easily tip into overwhelm, as well as navigating emotions and providing an optimum amount of stimulation that supports focus.

I recently realised I wasn’t even sure what my stims were, apart from occasionally rocking from foot to foot, and a couple of minorly self-harming ones (lip and scalp-picking) that I mostly only do in private and have done since childhood. Since learning about stimming, I started to rub my index fingers and thumbs together when at a stressful medical appointment, and that helps a bit, but it doesn’t come naturally.

I’ve tried a few stimming toys, but they always break, get lost or forgotten, or just don’t seem to become part of my routine. I think part of the problem is that the perception of “stimming” is quite limited. It’s not just movement-or touch-based; it can be so many other things.

One now-lost stim that clearly stands out for me from my early childhood is the one my mother would often tell me about, and which I remember seeing on silent home movie footage.

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Welcome to Not Always Neurosparkly: Musings on AuDHD Life, where I explore living an authentic, self-honouring and relational life without glossing over the challenges that come with a different neural wiring and variable access to energy. This essay is one of my deeper-dive longer research-based ones for all subscribers and I’m grateful for the input from several readers in my subscriber chat who contributed their fascinating experiences with music. Thank you so much!

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I often astound people with my ability to remember every single lyric of a song from years ago and to recognise many songs from the first beat. As a musician and singer, this can be useful, but it also highlights the healing role music has played in my life, particularly as a neurodivergent person.

“Studies point towards [the fact]that having ADHD increases the chance of having unusually strong rhythm and pattern memory for music,” according to “Neurodivergent Geek Girl”, a neurodivergent educator and writer with a background in neurobiology, biology and human behaviour.

How can this be, when ADHD is associated with poor working memory? She clarifies that this is not photographic memory, “but enhanced beat and pattern retention, because rhythm activates dopamine and motor circuits that ADHD brains respond to more intensely.”

The interest-driven repetition common in ADHD also sculpts the brain through neuroplasticity: in other words, if music is your thing, you are more likely to remember it!

Finding reward pathways that work

Recently, I found myself navigating heavy emotional weather. I was suddenly hit by the impact of major life changes happening in quick succession — a house move, new pets who turned out to be more demanding than expected.

I felt completely overwhelmed emotionally.

I tried a lot of things to help my nervous system regulate, including just sitting with the feelings and allowing them, but nothing was helping it move through.

Then, in my regular creative practice, I was drawn to work on a new song for half an hour. Engaging with my own music, infusing some of my feelings into the words, then hearing my own voice singing them back was so therapeutic. I noticed that my state had completely changed, without me even trying.

I felt calm, joyful, and more optimistic about my life situation.

It shouldn’t have surprised me, because I’ve known for a while that music can calm our nervous systems and reduce the stress hormone cortisol. During a week when I sang with others three days in a row, I was astounded to find that my ADHD symptoms quietened down to the point where I barely noticed them.

Both ADHD and autism involve altered dopamine regulation, and music strongly activates dopaminergic circuits. Could it be that some autistic and ADHD individuals might find rhythmic stimulation especially regulating or rewarding?

When our minds are whirring with thoughts — as they so often are with ADHD and autism — beat, cadence, and repetition give us something to hold onto. In the chaos of life, music fires up our reward pathways so we no longer need to brace as much.

And that is so much more relaxing.

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Boosting relaxation response and immunity

Autistic and ADHD people have so much going on in their highly sensitive nervous systems; sometimes we just need a break! But when life keeps going, no matter what, music has the power to change nervous system activity in very concrete ways.

It impacts neural network activity and brain physiology, which underlie autonomic processes like heart rate, respiration, hormone release, and pain perception. Listening to music positively impacts heart rate variability, suggesting enhanced parasympathetic activity, which governs the “rest and digest” relaxation response that can be so hard to access when you’re firing on all cylinders all the time.

According to this study, singing for even just one hour can significantly raise secretory immunoglobulin A (your immune system’s first line of defence) and reduce stress indicators, suggesting direct impacts on endocrine and immune function alongside psychological well‑being.

If music is stimulating, our vital signs increase; if it’s more sedative in effect, our vital signs decrease. This is the principle behind the work that music therapists do, helping to calm or energise their clients. And, as we’ll see later, the way this musical soothing happens can be very specific with neurodivergent folks!

Music also boosts endorphins and oxytocin, which we could all use a bit more of, whatever our neurotype. Singing together produces extra benefits such as social bonding and positive affect, which I’ve discovered through singing in choirs over the years.

Calming our thoughts through do-it-yourself music

The best thing is that we don’t have to be a musician or participate actively in music to benefit. When we listen to music, even if it’s in the background, our vital signs are “pulled” and entrained to it. Later, we’ll look at how passively listening to music can support neurodivergent brains and nervous systems. However, we can “make our own music” in very basic, accessible ways.

You may have heard that humming is a good way to stimulate your vagus nerve, which is the body’s natural switch between fight-flight mode and healing mode.

When my brain is buzzing with too many thoughts to settle, I try a meditation my neuro-affirmative somatic therapist taught me. I practice alternate nostril breathing followed by humming with my fingers blocking my ears, so that the sound can fully reverberate through my skull. It usually works to clear my mind.

And if you do want to sing, you may be relieved to hear that tapping into music as medicine is not about singing well, either. It’s about singing fully, feeling the vibration in your body, something every good singing leader I’ve sung with has been very clear about.

Creating a bridge to our emotions

For many autistics and ADHDers, the relationship to emotions is fraught with disconnection, confusion and overwhelm. Struggling to stay emotionally regulated is a key feature of ADHD, and alexithymia (difficulty identifying, naming or connecting with emotions) is common in both ADHD and autism.

The power of music to help access emotions and work through them was confirmed multiple times among my neurodivergent readers.

My whole coping strategy all my life has been shutting down my feelings, and music historically has been one of the only relatively safe and reliable ways I had to access them.

~ Ann Bennington

“When I listen to music, it always evokes a feeling for me. That can be regulating and help me process something I am feeling,” Ann continued. But she also emphasises the importance of choosing the right music: “But if it doesn’t match with what I’m feeling, it can almost feel dysregulating.”

Self-described “neuroqueer badass” says that after decades of being “medicated up to the eyeballs” since being misdiagnosed at age 16, music has been the best way she’s found to access her feelings. Another autistic reader described their favourite musical artists as “primary emotional regulators.”

I can certainly relate, having used the music of the Beatles from the age of ten to comfort and uplift myself during a challenging childhood and teenagehood.

Another AuDHDer said that songs often get them to pay attention to their feelings. “Song lyrics, which are always in the back of my mind on a loop, tell me something about myself, or something I’ve been thinking about, but where I’ve silenced my own voice.”

Neurodivergent writer Wake Lloire told me this touching story about the cathartic impact of music: “A 7-year-old and I had a very serious discussion about Moonlight Sonata. I told the kiddo that it makes me cry every single time. He said that it leaves him ‘emotionally destroyed’.” My own emotional response to music is strong, with music forming a landscape to so many of my relationship struggles throughout the years.

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Getting the stuff of life done

“Most neurodivergent brains operate under fluctuating access, state-dependent capacity and sensory and emotional tax,” says AuDHD advocate and educator Teo of NDWise Hub. Music can be a great ally in dealing with all this because it directly keys into state change and can open doors to activities we feel blocked from doing.

Many neurodivergent people in my informal survey, and anecdotally, talked about how effective they find it to curate playlists for particular moods or for certain tasks, such as studying or writing.

One AuDHDer described using pop punk to help with difficulty transitioning into and out of the shower, a common ADHD/autistic struggle. They also mobilised with happy tunes to shift out of the task paralysis that is so common with AuDHD.

“I’ve got tunes that energise me and get me going, tunes to focus my attention, and tunes to relax me after a long focus session. It’s what has been holding me together the past 2 years, I swear.”

Never going anywhere without Airpods to play favourite tunes, playing the same songs repeatedly and obsessively for a period of time, and absorbing all the relevant trivia connected with the song, are other patterns of musical behaviour frequently reported by ADHDers/autistics.

My fellow AuDHD friend and I laughed about the statistics from our annual Spotify Wrapped summaries of listening activity: “You are in the top 2% of listeners” — out of millions.

Accessing memory

Have you ever listened to a song you’ve not heard for decades and had a whole zip file of memories open up inside you, complete with sights, sounds, smells, and emotions?

“That’s one of the pieces of music’s power, perhaps for us neurodivergent folk more than others,” shared autistic writer Ann Bennington in my subscriber chat, where I asked my readers about their experiences with music. “It brings the ability to recall whole gestalts from the past — thoughts, feelings, memories, societal zeitgeists.”

AuDHD educator, writer and system disruptor Jaime Hoerricks writes extensively about the Gestalt way of thinking that, she argues, is common among ADHDers and autistic folks. This is a way of knowing and perceiving where meaning and form arrive as wholes before they are broken into parts. I wonder if this tendency also pertains to our relationship to music.

“Music powerfully returns me to places and people from the past,” said another neurodivergent reader, while another autistic Substack reader talked about using music to assist them with writing a memoir, having no immediate access to the details of personal memories. A playlist of 100 songs, each evoking a special interest from a particular time of life, did the trick. “Hearing even a bit of each song immediately revives sights, sounds, details and emotions of that past time so they can be documented,” they explained.

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Soothing and bringing joy

Self-soothing my listening to music is a frequent theme among neurodivergent folks.

“I sit down almost every evening, play some chords on the piano or guitar and sing — just to myself. I find it immensely relaxing before going to sleep.”

“My best life would just consist of listening to music. I have about 60,000 songs in my playlist and have music on nearly all day when I can.”

“Spotify is my safe space.”

And what soothes may not be what you expect. If you’re neurodivergent, you might find that what you respond to best in music is very different from others. When “birdsong and binaural beats” don’t work to calm you, maybe death metal will, according to in the brilliantly titled “The brutal precision of stillness: Why I regulate my nervous system with death metal (and why your equivalent matters).”

Over twenty years ago, I had a boyfriend who played bass in a death metal band (I always dated musicians!) and almost exclusively listened to this genre of music. He was one of the gentlest men I’ve ever met, so it often confused me, but perhaps now I understand it more. Brodmerkel characterises intensity as an “anchor” and describes using death metal music as a “precision tool for neuroregulation”:

Death metal—particularly music with intricate polyrhythms and unexpected transitions—demands continuous engagement. For an ADHD brain struggling with executive function, this kind of intense cognitive load can paradoxically create focus by occupying the prediction systems that would otherwise run unchecked [causing stress].

The chaos outside meets structure inside.

I just love the specificity of this! An AuDHDer in my informal survey said, “Music is the blood that runs through my veins,” adding that it was only music composed before 1750 that could make them feel anything.

In our efforts to soothe, we can also use music to help ease relationships with others, a frequent challenge for neurodivergent folks. The power of music to soothe others, such as animals and children — to help them “calm and click” — was described by another reader, who invented lyrics and melodies to accompany every task and transition while raising their (also neurodivergent) children, including getting up, changing nappies, getting dressed, and preparing food.

One evocative pathway to joy is the experience of awe — and engaging the senses through music on good headphones is a wonderful way to evoke awe. Neuropsychologist Dr Zonya Mitchell writes about the vital role of awe for autistic people, who often struggle to access joy because of sensory overwhelm and social challenges.

Awe is the feeling you get when something is so vast, beautiful, intricate, or unexpected that it temporarily pulls you out of yourself. Time slows, your thoughts widen, your body softens, and for a moment, the noise quiets around and inside you. Awe often lives at the edge of special interests and deep curiosity.

~ Dr Zonya Mitchell

Awestruck moments with particular music tracks have stayed with me sometimes longer than anything else. Here’s a “Best of” playlist of one of my favourite artists, Weyes Blood, who has been making me feel all the feels in very specific ways since about 2015. I can still remember particular streets I walked down as I navigated a certain romantic relationship, accompanied by her powerful songs and feeling like my heart was breaking open to exactly the tenor of her dramatic organ-playing and deeply felt vocals.

Music is a familiar and intimate friend and sometimes a provoking catalyst for change. For those of us who are differently wired, it can be a bedrock to return to again and again, especially when finding places of belonging and resonance can be so elusive in our everyday life.

What is your experience with music like? How has it helped, soothed, inspired, motivated or simply met you?

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I’m a neurodiversity advocate with a psychology background writing about AuDHD life, living with chronic illness and disability, and alternative relating styles. I’ve also written a memoir, ‘The Wild Wandering Arc: A Journey through Vanlife, Nature & Love’, and I have a couple of my own music tracks available on Bandcamp here.

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Yesterday, I talked to my therapist about the fact that although there are positive healing signs in many aspects of my journey, I have also been noticing my baseline capacity decreasing over time.

The combination of AuDHD burnout and chronic fatigue has meant that I now cannot easily contemplate doing things that I would have done two years ago; a year ago, I could do them with difficulty and strong “payback” afterwards, but this year, there is no denying the sobering reality anymore.

The strange thing is, although this realisation has brought a strong measure of alarm (Will I ever get better?) and sadness (I’ll be left behind and left out), it’s also brought some relief. My therapist, who has years of experience working through chronic illness herself (and is also AuDHD), emphasised how pivotal this phase of healing is.

Because things are getting very, very real.

I don’t have a small life, but I do have a different life from the one I thought I needed to have. The one I wanted to have. The one I was told was the definition of a “full life.”

And I’m finding that I like the me that is within it.

That word, “full” – how much we attach to it. When I told my therapist I had been unable to “show up fully” at my birthday celebration with friends last weekend because I felt so unwell with chronic fatigue, she gently questioned me.

And I realised that the definition of “fully showing up” had come to mean, at least in my head:

• Being “on”, available, deeply listening, animatedly conversing, and being “good company”.

• Being “fun”.

• Making things better for people.

• Being helpful and useful.

But what if showing up fully meant showing up just as I was in that moment, in the beach sauna with nine other women?

What if it meant …

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