I cannot tell you how many times I heard it during those school years, and if you are the parent of a neurodivergent child who has struggled with school, anxiety or school-based distress, there is a good chance it may provoke some kind of visceral reaction in you too.

It seemed to appear everywhere. IEPs, emails, meetings.

“She needs to build her resilience.”

“She needs to become more resilient.”

“We’re building resilience by exposing her to X, Y and Z.”

What does it even mean?

The dictionary definition is someone able to withstand, recover quickly from, or adjust easily to misfortune, adversity or change. Someone tough, hardy, buoyant and adaptable.

On the surface, that sounds reasonable. A positive goal even. Nobody wants their child to fall apart at the first sign of difficulty. But the way resilience gets used, and the impact of the actions that often follow, in the context of neurodivergent children is something else entirely.

Why I Have (Several) Problems With It

The idea of resilience is rooted in the belief that those with inner strength and adaptability are more successful, and that if you are not resilient enough it is a personal failing rather than a wider issue that needs addressing.

For neurodivergent children specifically, framing their difficulties as a lack of resilience invalidates their experience, encourages masking, and creates more pressure and strain.

The reality is that this word rarely appeared when my child felt safe, connected and able to learn. It tended to emerge when she was already struggling, when anxiety was escalating, when school was becoming increasingly difficult to access, or when her behaviour was communicating something important about her environment that perhaps nobody was fully understanding.

The way resilience gets used often places the responsibility on the child with an already heavily burdened nervous system operating at full capacity, and yet rather than getting curious about what was making things so difficult, the conversation often seemed to move quickly towards how we could help them tolerate more of it.

Take this excerpt from my child’s final school report 👇🏻

“X demonstrated incredible resilience and has overcome obstacles with a positive attitude. Her perseverance is commendable.”

It was EXACTLY at this time she crashed and went hurtling into autistic burnout, catapulted into crisis; there was no equilibrium she had returned to, no recovery that had taken place. What resilience had come to mean was not showing discomfort, living with distress, putting expectation above need and making sure nobody saw what was really happening ~ and if you do that, you’ll get celebrated for it.

What often gets missed in conversations about resilience is the difference between resilience and nervous system override.

A resilient nervous system experiences challenges and then returns to safety. Override happens when a child repeatedly ignores what their body is telling them because they feel they have no other option.

From the outside, this can look like resilience. But the distress has not disappeared; it has simply become hidden. What gets praised as resilience may, in some cases, be a child becoming increasingly skilled at overriding themselves ~ hello high masking children….

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Masked Resilience

This is what I have come to think of as masked resilience.

Going into an environment every day that scares you, the effort involved in getting dressed, walking into school, navigating a sensory environment that feels overwhelming, managing social expectations that may feel confusing or exhausting, and suppressing distress in order to appear as though everything is fine requires an enormous amount of energy. There is no recovery time in this ~ hence why parents often see the post school meltdown.

I sometimes wonder whether many autistic adults and young people who experience burnout are not lacking resilience at all, but have spent years demonstrating a version of resilience that required them to abandon themselves in order to survive.

Ultimately, when we talk about resilience in the context of marginalised groups, there is always a risk that we end up individualising problems that are actually systemic. The push to build resilience can become a way of shifting responsibility away from the structures that are creating the distress in the first place. Instead of asking what barriers exist and how they might be removed, the focus becomes helping the child adapt to those barriers.

What Builds Resilience?

Safety.

I’m all for it, but the irony is that genuine resilience probably develops in the opposite way to how it is often pursued.

I do not believe resilience grows when children are overwhelmed. I do not believe it grows when they are operating from a state of chronic stress, nor when they are constantly being asked to override their own needs in order to fit into environments that do not work for them.

We continue to go back to safety. Safety in their body, their environment and their relationships.

A child whose nervous system feels safe has far more capacity to tolerate challenge than a child who is already operating in survival mode.

This is why low-demand approaches are so often misunderstood.

Reducing demands is not about lowering expectations or wrapping children in cotton wool. It is about creating the conditions in which a child’s nervous system can regulate and recover. It is about creating environments that are safe and inclusive, where autistic identity is encouraged, where autonomy is respected, and where children learn about their bodies and needs in the world.

And perhaps that is the question I keep coming back to.

Not how do we make autistic children more resilient?

But how do we create environments where they no longer need so much resilience just to get through the day?

Let’s start with the invisible, relentless cognitive and emotional labour of managing a household and family, researching, self educating, organising and the relentless advocating.

But there is so much more.

It is the anxiety attached to wondering if your child will get into school that day and at what time the call will come to say they’re not coping and you need to pick them up NOW. It’s the sadness at seeing your child struggle and not knowing how to help, the guilt that you should have known sooner. It’s the endless crying in the car park because you’ve tried to be upbeat for your family and you can’t hold it in anymore. It’s the sense that this is your fault, it’s the hating yourself for the times you couldn’t stay regulated, it’s the worry that your other children aren’t getting enough attention and your marriage is screwed. It’s the fear for their future, for YOUR future because goddam it you’ve lost who you are and what your purpose is. It’s laying awake scrolling Facebook at 3am seeing people’s kids smiling on their ‘back to school’ photos, displaying their sporting accolades. It’s the sitting in front of the experts, answering the same questions over and over about whether you breast fed, it’s having the same conversations ‘no my child is not fine’, its the sleepless nights, the money spent, the loneliness and the exhaustion as your perimenopausal body screams ‘hang on there’s more to take’. And honestly its the lost friendships, and the loneliness because it is so much to carry. EVERY SINGLE DAY.

And guess what. We normalised it.

Society said this is what you do, you take it on and you deal with it, preferably in silence, don’t make a fuss, stay strong. And it’s what we do. Smiling on the outside and numb on the inside, wondering how the hell we got here.

Fun fact.

When a child struggles, a mother’s advocacy or need to find answers is often dismissed as ‘irrational, over-reacting, or projecting her own anxiety onto the child’.

Conversely, when a father presents the same facts, he is viewed as an objective, logical parent, his concerns are validated.

Why does this not surprise me?

There are so many examples where we as women are put on the front line and often not through our own choosing. If you’ve ever been through a diagnostic process for your child you may remember the heavy weighting of questions towards ‘mum’ (I have a name!!!)

There are two questions that used to chip away at my soul, I heard them so often.

Did you breastfeed?

Did you ever leave your child alone with a babysitter?

Regardless of your answer to those questions there is intention behind them, that in some shape or form, your behaviour as a new mother has influenced why you are sat in that room with your struggling child.

Mum is anxious, they say.

Mum reports that the child is worried at home but they are fine when they are here.

Mum has expressed concerns about X,Y,Z but there is little evidence to support….

Parental blame is alive and well.

Is it really any wonder that research shows an increased risk of depression, anxiety, and social isolation amongst mothers of autistic children while the ‘WM ADASS Blamed Instead of Helped’ report found that 86% of parents experienced active parental blame from health, education or social care services before their child received a formal diagnosis. Of those participants, 92% were birth mothers.

There is a lack of support for parents. Full stop.

And I believe that as mothers we are so invested in our children that we forget about ourselves. How selfish would it be to consider your own needs when your child is struggling.

I cannot tell you the amount of times I have cried in meetings, a shocking amount, and just once, a kind psychologist said to me ‘who is looking after you?’ and my whole body erupted because no-one had asked me that. It hit me to the point I could not speak, silently convulsing, my body betrayed how much I had been holding in.

What did I do after that session? I swallowed it up and went back to what I was doing.

The load of a mother.

People had told me I was strong, that they couldn’t do it, that my child would be ok, that I needed to look after myself, ‘SELF-CARE’ apparently, I thanked them but inside I was screaming ‘you have no idea’.

And I want to talk about what this does to you as a parent.

I’ll pre-empt this by saying, man, I love my kid, she’s an absolute belter but we went through some very hard years, and during that time I really lost who I was.

I was the one that had to step back from my career, I had to cancel meetings to get my child from school. When we took my child out of school, I was suddenly tasked with activities in honesty that I didn’t want to do. I grieved my old life and one day it dawned on me that I didn’t know who I was anymore, or what my purpose was in this crazy world. Rather than showering myself with compassion I simply felt like I had screwed up.

More guilt, more regret. We are so hard on ourselves aren’t we.

Not to mention the elephant in the room, your own potential neurodivergence. There’s nothing like an overstimulated home life and a few diagnostic questions to make you think, hang on here, is there something more to this, and the light bulbs start flashing…..

There are so many neurodivergent mothers who are parenting while carrying the load of sensory overwhelm, burnout, years of masking, and on top of that the pressure to constantly prove they are good mothers; in a society that holds us to such impossible standards.

If I read this back it’s no wonder my nervous system was screwed, the dance of dysregulation I call it and I was in it every day. Survival mode energy is our vibe, and it doesn’t just disappear when your body is stuck in years of hyper-vigilance; it takes time for the body to feel safe again.

This isn’t an article with a tidy solution because I don’t think there ever is one. The honest answer is that mothers need and deserve more support, compassion and understanding.

Professionals need to stop positioning maternal concern as pathology. Schools need to understand that ‘mum’ sitting across from them is to be believed and validated.

Mothers who are parenting in this way, aside from deserving the most incredible all inclusive solo trip to the Maldives for 6 months; deserve acknowledgement that what they are carrying is real, it’s hard, it’s important and that their own body and regulation deserves to be prioritised.

If any of this is your story too, here is what has helped me.

• Self validation.

• Education on what was happening to my own body.

• Community.

• Talking with people who got it.

• Reframing what I wanted life to look like.

• Developing a deeper understanding of self.

• Looking for glimmers.

• Hope, even when it felt hard.

• Self forgiveness.

• Working on my own conditioning.

• Repair, repair, repair with my child.

There are more but I’ll keep coming back and updating.

If you are a mother in need of support, please feel free to reach out.

I remember feeling such relief when we finally got that diagnosis, but also fear and trepidation. I had an intense need for my child to feel ok about hearing that she was indeed autistic, because I knew how broken she felt.

Still. There is so much stigma.

When you’re a child who feels bad about themselves and you’re told you’re autistic, I can understand why it would feel natural to blame the autism. But is it that, or is it the way society views it that is the issue? And what is the impact of this?

When I speak to parents there are many whose children are rejecting their diagnosis. Those children don’t want to hear the word ‘autistic’, they don’t want to believe it applies to them, their relationship to that word is not a positive one. And these parents, some of them struggling with their own acceptance, can be so desperate to help, they’re scrambling around to find evidence on why it isn’t such a ‘bad’ thing.

I remember googling autistic celebrities, trying to create some enthusiasm.

‘Look child of mine, look how successful and happy these famous autistic people are‘

The best I could come up with was Susan Boyle, some old dudes and Courtney Love.

For obvious reasons, I kept those ones to myself.

Then we have the diagnostic process itself. Shuffled into clinical rooms, meeting multiple people, answering questions, filling out forms, being scrutinised on repeat, followed up with a two-page list of things she needed to change about herself, under the guise of ‘support measures’.

Is it any wonder some children, who are already at odds with the world, may struggle to accept this part of who they are, when so much of their experience is focused on lack, flaws, interventions and treatment plans. I’m sure we can all remember a comment someone made about us as children, about our weight, our laziness, not being sporty enough, and we carry those messages into adulthood. Now imagine a child receiving that kind of deficit-based messaging on repeat, about who they fundamentally are. It doesn’t take a genius to realise that a child going through all this, at such an impressionable age, isn’t going to have the best self-perception.

Being stigmatised by what you see of yourself in the world comes with a cost. The messages children receive early on shape how they see themselves, and while the landscape is changing, the view of autistic people is still heavily weighted towards deficit.

This has such a negative impact on wellbeing and not only encourages masking, it damages self-esteem and self-worth, and can lead to burnout and mental health crisis.

The other side of this would be positive autistic identity

In all these years, I haven’t heard anyone talk about it, yet it is so crucial to the wellbeing of young autistic people, positive autistic identity is how a child sees themselves in the world and their place in it, how they show up and interact with a strong sense of who they are.

I feel in some ways we’ve become too accepting of the struggle, with the assumption that finding joy in one’s autistic identity is beyond the realm of possibility. And it really isn’t.

Research has shown that autistic people who have a more positive autistic identity have better psychological wellbeing and lower social anxiety, they do better in the world and this identity can help them to address barriers to social relationships, create connection, and decrease feelings of loneliness. It is possible.

What we need…

This isn’t about seeing autism as a superpower, or pretending it isn’t disabling or difficult. I want my child to be proudly autistic, confident in who she is and both myself and society play a role in that.

Every support plan, accommodation and intervention sits on top of how a child feels about who they are.

What happens if that foundation is shame based?

I’m not suggesting all accommodations are coming from that place, but a large proportion are geared towards making our children fit into a neurotypical world. And when we’re so focused on achieving an outcome or changing a behaviour, we can lose sight of the things that actually matter.

Relational safety. A felt sense of safety. Connection. Community. Autonomy. The space to unmask. These have a direct impact on mental health, positive identity and self-esteem, and they only become possible when a child has safety in their body and feels fundamentally okay about who they are.

What this looks like in practice is based on my own education and lived experience of witnessing my child start to feel good in her body;

Using strength-based language over deficit-based, the reason most autistic people like identity first language is that it is who they are and shapes every aspect of their being. When I hear parents say they don’t like to say their child IS autistic because they don’t want them to be defined by it, that suggests their definition of it is not one held in esteem.

Neuro-affirming care and practice, in the true sense, not neurodiversity-lite, autism template plans and buzzy sales strategies. I’m talking about support measures that are unique to each child, that show care about who they are and that work to their strengths. Measures that encourage autonomy and self-understanding rather than compliance, the safety to learn what autism means for them, on their own terms. And let’s not forget research and practice that centres autistic people and their experience rather than studying them.

The important part to end this is that this shouldn’t be about damage control, where we’re witnessing autistic people who have been damaged by life and we’re trying to piece them back together. This is about dismantling the systems, the structures that create a world in which autistic people don’t feel good in themselves in the first place.

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Well damn, no-one’s laughing now.

As a new parent I think you prepare yourself for teenage stuff, a few slammed doors, arguments over messy rooms and friendship troubles.

But nothing quite prepared me for this. The avalanche that can hit autistic girls in a way that nothing readies you for, this one isn’t in the parenting manuals or the community facebook group; this is something totally different, and it’s not only emotionally hard, it can have devastating consequences for our young people.

I’ll call it the grand unravelling.

And while there’s an element of light heartedness to this, it’s an incredibly difficult, emotional time, still there is so little support and education for parents and autistic girls going through this experience.

For myself, it is fair to say it has definitely been the hardest experience of not only my parenting journey but my life as well; watching your child go into crisis but not knowing what to do.

This is what I see:

Two kinds of girls where those wheels come off about 11-13 years old-ish.

~ The girls who have an autistic diagnosis, they tend to have low support needs, which educators and practitioners are likely to label as ‘high functioning’ ~ (I’ll come back to why I can’t stand that term in a bit).

~ The girls who have always had a certain quirkiness about them, some anxiety, that have niggled away at a parent’s mind for years but no official diagnosis, or they have received another diagnosis such as an anxiety disorder that never quite felt right.

And then BAM parents are witnessing this crumbling of their child, where their mental health starts to shatter, anxiety increases, parents may find their child engaging in self-harming activities, or a general withdrawal from life and friendships that were once part of their life become harder to maintain.

Life suddenly changes.

Parents find themselves asking ‘what is happening to my child?’

The answer would be ‘a lot’.

This age is an incredibly hard time for any child hitting puberty but for autistic girls it can have some really rough outcomes.

Not only have you got the transition to secondary school.

Throw in more academic demand.

Some complex social relationships that have gone from collecting plushies and roleplaying to Sephora’s latest skincare routine and whatsapp chats.

And then, right in the middle of all of that… puberty and menstruation.

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PUBERTY. This is when everything changes.

I’m not sure how to describe this (which is ironic when I’m about to mention alexithymia). You’re in a body that feels unfamiliar, it’s like a physical detachment, that creates an avoidance of self, a prickly discomfort, where your mind isn’t ready for your changing body.

And then you’ve got sensory sensitivities that become so heightened and hard to manage, and for a girl who already struggles with interoception, the ability to read her own internal signals, these physical changes can feel overwhelming and confusing.

Throw alexithymia into that picture and you have a child who cannot identify how she is feeling, the hormones, the mood changes, the emotional dysregulation increases, and she cannot communicate what is happening inside her because she genuinely does not know.

It was only in my 40’s I started to understand my own sensory profile and what was happening in my body, so for a child, that’s pretty hard.

Here she is.

She doesn’t quite know her standing in the social world around her. She has been thrown into an environment where the social rules have completely changed, her self-awareness tells her she is different, her peers pull away because being ‘different’ becomes feared and her self-esteem plummets. And she is doing all of this in a body that no longer feels safe.

It’s fair to say.

The masking ain’t masking anymore.

It is so much harder to keep yourself together, to balance these internal / external worlds and the consequences are real and deeply damaging.

As parents you will know that something is not right, and it is important you pay attention to your intuition. It is not uncommon for autistic girls who were seemingly fine receive a diagnosis around this age and parents had no clue up to this point.

In my own experience, it felt like it hit overnight but it wasn’t.

The night time worries ‘do I have to go to school tomorrow’ became more intense.

The wanting to stay home and not meet friends a little more frequent.

She was slightly more fearful, more withdrawn, more avoidant, more hypervigilant, more distant with her siblings.

And I think I wanted so badly for it to just be something that I could deal with, that I almost watched with trepidation on the sidelines, not wanting to believe I was witnessing my child in crisis.

Those 3 years were very hard. At the same time I don’t believe they had to be that hard.

A lot of this parenting journey is feeling like you are in this on your own; yes there may be professional support but feeling like no-one truly gets it, is an isolating experience.

It’s 2026 and we’re still not getting it. There is a danger to not seeing our daughters in their lived experience. Why are we not getting it?

Because research is still stuck in the dark ages.

Because teachers lack training in how autism presents in girls.

Because autistic lived experience is not being heard enough.

Because no one knows about burnout so we continue to push our kids until they become a puddle on the floor.

Because our girls don’t look autistic enough.

Because they’re too well behaved, too social, too able to make eye contact, too conscientious, too good at appearing fine for anyone to believe there could be anything more going on.

Because of clinician bias.

Because there is still a lack of understanding about masking.

Because parents are not heard and validated.

Because a child gets labelled high functioning and the internal cost of that is completely ignored.

And these girls are less likely to be on anyone’s radar, until it all becomes too much.

I wish I’d known then what I know now and how I would tackle it.

If this has impacted your family, I’d love to hear your thoughts.

Much love

Georgina

I saw a lot of struggle, a lot of pain, and many times genuinely good information.

Alongside this, as parents spoke about navigating this journey, I read a lot of people saying how parenting an autistic child had changed them as a person for the better.

They had stepped into their role and embraced it.

Words of support, such as ‘You’re only given what you can handle’.

I never got it.

Nothing about those words resonated.

I hadn’t found my strength, or my calling as a parent, I wasn’t able to exhibit this radical acceptance I heard others speak about.

In fact quite the opposite. I felt pretty shit most of the time.

For a long period, it festered inside of me, a sense of loss, and I won’t call it grief because it wasn’t, it was a loss within myself.

I didn’t know what was happening to me or where I had gone; this fiercely independent, feisty person POOF. Disappeared.

I didn’t recognise myself physically or mentally, and the ultimate truth was I felt like a fraud. People praised me for my strength, for being a good mother but all I felt was failure, a person without identity or purpose. I had always prided myself on being someone who was in control of life, and while the facade was still there, internally I was spiralling. A gradual unraveling of the person that once was.

I had become so focused on what I was losing, all the things I felt were being taken from me ~ I feel the need to word that carefully, because it wasn’t about my child, or some grief about what I thought motherhood should look like.

This is about what was happening to me inside.

How I felt about myself.

The reality that maybe I never knew myself.

The weight of my own conditioning.

The validated version of me that I had presented to the world.

Was leaving me.

And I didn’t have anything to replace it with, I was just existing in this murky middle ground.

So it’s probably clear by this point that I didn’t just step gracefully into the role of parenting a neurodivergent child.

I dragged myself through it.

Raising a child who enters crisis is as much about you as it is them.

(**Should probably make note of your own potential neurodivergence here…)

And it does NOT matter if you haven’t got this figured out right now or somehow you’re not euphoric about your existence.

You will be challenged in ways you never imagined. There will be days you look at yourself in the mirror in utter despair, filled with guilt and regret, thinking who the f*ck am I?

And a personal touch of why do I look so goddam old all of a sudden.

You might have to start from scratch, parenting not only your child but yourself.

Learning a slower pace,

the grace to parent differently,

establishing a more forgiving and kinder existence,

that is filled with opportunities for repair and connection.

And along that way, its ok to break a little bit.

There is still a lot I regret. I can’t look back and say there is nothing I would change, that I am now a stronger person because of it. That simply wouldn’t be true. But I am different now.

With a deep connection to my child that fills me with intense joy, and although at times I screw up, I have a much more compassionate and understanding relationship with myself.

I am not the person I was.

And I will never be her again.

Sometimes I miss her. But I also get it now.

The heaviness and physical dread at having to fight endlessly to be heard and supported.

Was I being too much, was I not being enough?

Had I created this whole thing in my head?

Was I supposed to throw my intuition to one side and believe that my child was…

Fine, a bit shy, slightly anxious?

She’ll grow out of it, they said, all kids go through this.

UGH.

What I know now, from years of fighting to be heard and believed, is that I am the expert of my child.

I know my child better than any professional, any teacher, and any support worker.

On reflection, there are things I wish I’d had the strength to say when I sat in meeting after meeting with teaching staff, inclusion and psychologists.

I’d say:

This is how I am choosing to support my child.

I am the expert of my child.

I know my child.

There is more to this.

My child is not fine.

The reality wasn’t quite like that; the endless need to prove yourself can take a hit at your gut instinct, and way too often I found myself holding back tears while trying to justify why I was asking for support again.

It’s a solitary experience.

‘Am I going nuts? Is anyone out there who gets this? Is it just me? Will someone please, for the love of god help me figure out what is happening to my child?’

If you are one of those parents, having to advocate for your struggling child daily you may have experienced not only the endless exhaustion of advocacy but ‘parental blame’

You know, the part, where your concerns are dismissed,

Questions arise over your parenting skills,

Being told your child is fine at school, making you feel like a neurotic fool.

Parental blame is alive and well.

I’ll give you some of my own lovely examples:

Being looked at quizzically when once again you’re explaining that your child is suffering severe anxiety at the thought of going to school, and they say

‘‘But she performs so well, the teachers have no issue with her’

Or you’re trying to get a head of inclusion to support your child, and they say

‘I’ve met with your child, and if they can fake it this well, they’ll do well in life’

or you’re fighting for an appropriate diagnosis and are told

‘Why are you so intent on your child being autistic?’

or you physically cannot get your child into school and get asked:

‘Is there something going on at home we should know about’

My marriage dissected:

‘We don’t want to be too personal, but is everything ok with you and your husband?’

You’re kidding me, right??

And every time.

Their words screamed at me, ‘You are the problem.’

I knew what they were thinking.
Here she is again.
The anxious mother.
Projecting.
Making a fuss.

If I wasn’t anxious before, I most definitely am now

.There is a long cultural and clinical history of pathologising mothers.

When mothers express concern, it is often interpreted as anxiety or an emotional response.

When fathers express concern, it is more often interpreted as practical, measured and rational advocacy.

This doesn’t mean fathers don’t experience blame. I’m sure they do.

But culturally and systemically, mothers are more likely to be positioned as responsible for emotional and behavioural outcomes.

This whole process takes you down a pathway where you lose touch with your own intuition.

It is exhausting and it does an absolute number on your nervous system.

Preparing to make the call,

Send the email,

Waiting for the call,

The meetings,

The dread,

The inability to focus,

Or work,

The fear,

The shame.

Every day.

As I say many times it should not be the parents’ job to bring the knowledge into the room.

It’s damaging.

Research has long evidenced the negative effects of parental blame on the whole family (1), with mothers in particular already at risk of social isolation, anxiety and depression (2) it is imperative to support parents on this journey.

What I know now is this:

Professionals are not experts on my child.
I am.

We need more training, collaboration and understanding. More recognition of the wider impact this has on families, and a child who is often missing out on crucial support. What happens then? More mental health issues, crisis, burnout, inability to attend school, to get an education, and parents who become so fragmented and dysregulated. It all has a knock-on effect.

That’s my story, and I know I’m not alone.

I’ll end this by saying, during our time in traditional education, I have crossed paths with some wonderful, nurturing people, who, although they weren’t autism experts, had enough compassion to really ‘see’ my child and provide me with such wonderful support. I won’t forget who they are.

If you are a parent who has experience of this, I’d love to hear your comments and equally, teachers who are keen to enter into discussion on how we can help our young people.

With love & endless compassion.

Georgina.

REFS:

(Courcy and des Rivières, 2017; Hingley‐Jones, 2005; Jackson et al., 2020; Mitra, 2022; Robinson et al., 2015)

(Courcy and des Rivières; 2017 Jackson et al., 2020)

When I first learned about burnout I did so in the worst possible way, my child in crisis, having exhausted all other avenues to try and get support and figure what the hell was going on, my research and self led education brought me down this pathway; it’s quite astonishing, actually pretty miserable when you explore the current narrative around autistic burnout, or lack of, and how this presents in practice.

What even is burnout?

Autistic burnout is not ‘I’m having a long week at work and I’m exhausted’; this is different.

Autistic burnout is said to be driven by the stress of masking and living in an unaccommodating neurotypical world (Higgins et al 2021); described as physical and mental exhaustion, loss of skills, and reduced tolerance to stimulus, driven by life stressors and a lack of support (Raymaker et al., 2020).

Oh how I can relate to both those descriptors.

Burnout has long been recognised by the autistic community as a major mental health concern (Rose, 2018), and can have long-lasting effects on a child’s ability to function, affecting their access to education, relationships, and overall mental health.

That sounds almost clinical.

The reality is that as a parent, it’s messy, unpredictable, heartbreaking, relentless; it whips away life as you know it, and you’re left stranded in total isolation, feeling out of control, not knowing how to help your child or if they will ever recover.

It has and continues to be unbelievably hard to navigate, but I don’t believe it should ever have been this hard.

Why are we not hearing more about it?

The cynic in me says that autistic research has never really been about supporting autistic needs; in fact, that’s not cynical, it’s a fact; pathologising autism, curing and treating, with research typically being about autistic people rather than with them, where the experience of autistic people has not been valued in academic and clinical contexts.

While more researchers are seeking to explore autistic burnout and autistic voices fighting to be heard, the continued absence of research leaves professionals without the knowledge or tools to provide meaningful support, which can have a ripple effect across education, clinical practice, and home environments.

The reality as a mother was having to witness my child in crisis, unable to access school, withdrawing from life, with increased sensory intolerance; and during that time, I never heard the words ‘autistic burnout’ from professionals. Not a jot throughout all my time with psychologists, teachers, professionals, not as something to watch out for or as something she may be experiencing; and I believe this is due to lack of education, lack of training due to it being overlooked in research.

What does it look like?

If you’d asked me two years ago, I’d have told you that burnout for us seemingly happened overnight, but it didn’t; in hindsight, there had been multiple episodes of acute burnout throughout my child’s life. As I piece together all these warning signals and damn do I kick myself now for not knowing, for not seeing what was happening;

the times she withdrew,

the sensory overwhelm,

pulling away from the outside world,

the mutism,

no longer engaging in things she enjoyed,

all signs of such incredible overwhelm she was facing.

It’s important to note that each young person’s experience will be different, with many parents only starting to be aware of what this might look like at the stage of crisis, desperately googling, asking on facebook groups, trying to find out what is happening to their young person.

Society may have a perception that autistic burnout means appearing depressed; in some instances, what may appear to be behavioural issues, such as meltdowns, shutdowns, hyperactivity or mania, could be signs of acute burnout, but the mistake that happens is that it is frequently misinterpreted and misdiagnosed, and in our case apparently she’s ‘just anxious’.....you’re kidding me.

Forced to live by what society demands, children are then told to push through, labelled lazy, school attendance is prioritised over well-being, and this has rippling consequences, further exacerbating the burnout.

Ah hindsight.

There has to be more insight into how this can present in our children; forearmed is forewarned.

Now what?

I’ll start by saying, I do not believe parents should be responsible for having to educate themselves on this as a means of understanding why they are witnessing their young person in crisis, this should be a conversation discussed during / post diagnosis, it should be understood throughout practice, within schools and we should be working on prevention, recognition and the response to autistic burnout.

But as we wait for the world to start respecting the lived experience of autistic people, as a parent reading this, what happens next?

Here’s what I wish I had done.

Listened to my instincts as a parent:

Throughout this journey, one of the things that I’m really upset about is how I lost connection with my own intuition. Even when my child was dragging herself to school, I knew in my heart of hearts it wasn’t right. I knew she was done in, but still I thought it was the right thing to do. I listened to people who I thought were experts and I followed their guidance. I clung on to this idea that we could turn things around and ultimately we paid the price of this.

Changed my expectations:

Responding to burnout in a child, in my experience, goes against every parenting technique taught. We are so driven by our own conditioning that it can be hard to choose a different way of parenting. Edgar (2024) states how crucial it is to offer low-demand households acceptance and sensory regulation. In real-life terms, drop the stuff that you think matters but doesn’t, because the reality is, if your child is struggling, it doesn’t matter if they eat dinner with you, leave the house, engage with family, shower daily, or do their homework; when we force these ideals, we are living by our expectations, not their needs. The list is endless, but what matters here is tuning into what is happening in your child’s body and responding accordingly.

Advocating for my child:

Don’t get me wrong, I feel I’ve heavily advocated for my child, just not enough. Children have limited autonomy over their environment, and factors such as alexithymia, masking, and interoception (Mantzalas et al., 2024) can make it difficult to articulate what is happening to them, how can they know they might be burning out, or if they feel safe enough to explore those feelings.

How wonderful it would be for parents to be able to identify the signs themselves and advocate on their behalf, staying attentive to those children who may be predisposed to burnout, for example, due to masking (Pearson & Rose, 2021) or recognising triggers to burnout such as puberty, but for that to happen we have to know more, and that must fall on the very people that we are providing services to support our neurodivergent children.

There is real hope that through a parent’s advocacy, education and understanding, the young person learns more about their body, their experience and starts to build safety in self-advocacy, because sadly recovering from burnout does not mean it will not happen again.

Creating safety and regulation:

I won’t lie, I freaked, panicked, and I still do to some extent, worrying about what was going on, what would happen, the future, and hands up my own dysregulation impacted her. My nervous system mirrored hers, and we were all stuck in some dreadful cycle of push/pull.

Phung et al. (2021) explored the needs of children in burnout and highlighted a desire for compassionate and supportive adults alongside collaborative regulation for support and validation. It took me a while to want to admit that to myself; it’s so tough as a parent trying your absolute hardest, to then have to deal with your own regulation. Forgiveness is key. I work a lot on repair, and it’s been hard. As a parent, this is a load to carry that very few understand.

Accepting that this is not linear:

There’s a thing I did, and I suspect I’m not alone, when you experience your child in burnout and they manage to do something they’ve not been able to do for a few months, they brush their hair or go to the shops. This internal hope appears, and you think ‘this is it’, they’re turning a corner, and you do the stupid thing of encouraging more of said activity, and before you know it, they head backwards and it can feel crushing.

Sometimes it’s 3 steps forward, 5 back, sometimes it feels like things will never change, sometimes things get worse when you think they can’t and sometimes things get better. Listen to your child’s cue, go steady, be patient, remain fluid and focus on love and support.

Rest & Recovery:

Neff (2025) highlights that recovery from burnout is a gradual and sensitive process, requiring deep reflection and significant change. If you grew up in the 80’s / 90’s it’s likely really hard to watch your child not leave their room, not go out, struggle with hygiene, or have seemingly way too much screen time because we know what our parents would have said about that, but deep rest in whatever way that looks like for you child is the best form of recovery. Meeting them where they are at, offering things without expectation, slowing down the pace of life, I wish I’d known this one sooner.

Look after yourself:

This can be the most intense, isolating experience. That’s putting it mildly. There is a certain pain in not being able to help your child, feeling absolutely powerless; the whole family dynamic changes, not just for your adult relationships but siblings too. I’m not even going to say something trite about self-care. Every part of my self-care routine went out the window, but there is a real risk of parental burnout throughout this journey. It’s easy to withdraw from life also because so very few people understand this way of life.

Find community, cling to small aspects of life for you, ask for support, have conversations, rest and be kind to yourself. I can’t write what I really want to about this in a paragraph, so it’s definitely something I’ll explore more in depth.

To conclude:

It’s a rollercoaster to navigate this; more needs to be done, and the foundations need to be laid to prevent further harm to our autistic children, no child should be experiencing this crisis with limited support. Parents need help, access to education, and their own support on this pathway.

References

Arnold, S. R., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Confirming the nature of autistic burnout. Autism, 27(7), 1906–1918. https://doi.org/10.1177/13623613221147410

Edgar, H. (2024). Autistic burnout: Supporting young people at home & school. Autistic Realms. https://autisticrealms.com/autistic-burnout-supporting-young-people-at-home-school-3/

Higgins, J. M., Arnold, S. R. C., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout. Autism, 25(8), 1–12. https://doi.org/10.1177/1362361321999303

Mantzalas, J., Richdale, A. L., Li, X., & Dissanayake, C. (2024). Measuring and validating autistic burnout. Autism Research. https://doi.org/10.1002/aur.3129

Neff, M. A. (2025, March 12). The autism burnout workbook helps you create personal recovery plan. KATU News. https://katu.com/amnw/am-northwest-books-authors/the-autism-burnout-workbook-helps-you-create-personal-recovery-plan

Neff, M. A. (n.d.). Autism and burnout prevention: Kids edition. Neurodivergent Insights. https://neurodivergentinsights.com/autism-and-burnout-prevention-kids-edition/

Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52–60. https://doi.org/10.1089/aut.2020.0043

Phung, J., Penner, M., Pirlot, C., & Welch, C. (2021). What I wish you knew: Insights on burnout, inertia, meltdown, and shutdown from autistic youth. Frontiers in Psychology, 12, Article 741421. https://doi.org/10.3389/fpsyg.2021.741421

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in Adulthood, 2(2), 132–143. https://doi.org/10.1089/aut.2019.0079

Rose, K. (2018). An autistic burnout. The Autistic Advocate. https://theautisticadvocate.com/an-autistic-burnout/

I feel the intense hurt of how autism is viewed and how autistic people are treated. I see the trauma attached to environments that actively damage our children. I could go on, but most importantly, I don’t want my child to have to change herself, to her detriment, to meet some neuronormative standards set by people whose fundamental belief is that difference is wrong.

Where did it start?

I don’t feel this is a topic we can discuss today without taking into account the history of autism. Believe me, I’m trying not to come across as too jaded as I write this, but it can make for pretty bleak reading when we look into how autism has historically been viewed and researched, which has traditionally been about autistic people rather than with them. The paragraph I’m about to write will not even touch the sides in exploring its complexity, but hopefully offer you an overview.

Dominant frameworks and theories of autism have historically been viewed through a medical lens, a pathology paradigm, and considered a deviation from societal norms. The person is viewed through a deficit-based lens, considered a disease/disorder where intervention is required to make the person less autistic (Dwyer, 2022). All very clinical and dehumanising, it make me think of lab rats, and when I see the little person in my life, these subhuman descriptions certainly don’t match my reality.

Decades of research on autistic people, as objects to be studied, rippled through into media and society, where every day, people hold opinions about what autism means and ‘looks like’, sadly, those views are often of the opinion that it something wrong and to be feared.

Autistic voices have been stifled, overridden, lived experience has been denied and invalidated, creating an epistemic injustice. It is only recent years where autistic voices are fighting to be heard:

‘Nothing about us without us’ (James Charlton)

Neurodiversity Paradigm

In 2021, Walker proposed the neurodiversity paradigm, expressing the importance of moving away from a pathology paradigm to a neurodiversity paradigm. She became a leader in challenging the framework under which neurodivergence and disability are viewed and developed the paradigm to recognise neurodiversity as a natural part of human diversity, claiming that the notion that there is one normal brain type is invalid and culturally constructed.

Being neuro-affirming is the practical application of the neurodiversity paradigm; it’s an anti-behaviourism fuck you to the pathology paradigm, instead focusing on the well-being and empowerment of autistic individuals.

While I’m here…… let’s talk about neurodiversity lite because doesn’t everything seem to be neuroaffirming these days ~ the danger of the buzz word.

In layman’s terms, Neurodiversity lite is performative; it pacifies, it’s a superficial following of what the neurodiversity paradigm is about, looks ok on the surface, not so great once you scratch it.

A practitioner who claims to be neuroaffirming but uses behavioural therapy or deficit-based language is not neuroaffirming, and this does active harm to parents who are seeking genuine neuroaffirming care.

Don’t get me wrong, there can be goodwill in adopting a neuroaffirming practice, the shiny surface level discussions of inclusion and person-first protocols often only run so deep, when the focus does not work on the injustice, the systems, the stigma that autistic people experience. Can a school profess to be neuroaffirming, if they are not determined to break down the very environment that is causing damage to children? Is a practitioner really neuro-affirming when they refer to a child as a disorder with a focus on behaviourism, with an ultimate goal to make the child more ‘neurotypical’. No. I don’t believe so.

What does it mean for us as parents?

From the day I suspected my child might be autistic and started seeking out autistic voices because nothing I read had felt right to me, I started to discover a world where autism wasn’t what I thought it was.

I’ve put down some ideas on what it means for me to be neuroaffirming, recognising this is a continual journey of learning and education.

• I actively support a model that does not aim to change my child.

• I reject a pathology paradigm.

• I focus on humanisation.

• I listen to autistic voices.

• I support autistic voices sitting at the forefront of practice and research.

• I recognise autistic people as experts of their own experience.

• I reject the idea that my child needs fixing / curing.

• I value my child’s experience and aim to promote autonomy and positive identity.

• I reject deficit-based language.

• I recognise that neurodivergent ways are valid.

• I encourage my child to explore their identity safely.

• I don’t believe there is any right / better brain.

• I seek to challenge and change the systems, stigma and injustice autistic people face.

• I choose individual support needs over one-size-fits-all therapy intervention or behaviourism.

Really, I just want her to be who she is, freely.

This is an evolving subject.. I’ll come back and add, edit, and explore more.

In the meantime, I’d love to hear any thoughts you might have.

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