Social, Medical and "administrative" models on autism and disability

Introduction: I had some musings (with LLMs) on the issues/strengths of medical and social models of disability, in particular autism. And thinking about, my own “model” which I called bureaucratic model, but might be better called administrative… and then synthesising this into interactive models which are discussed briefly… and some links end for further reading.

My question: For understanding autism, what does each model explain well, what does it obscure, and what framework best guides how we treat autistic people and design support?

My answer is that both the medical and social models capture something important, and either becomes misleading when treated as the whole story. And to ignore the administrative state is to ignore a whole other layer in terms of what is happening.

For autism in particular, one could use something close to an interactional model: disability arises from the interaction between a person's underlying characteristics, the demands of their environment and the support available to them.

This is also broadly where the World Health Organization's International Classification of Functioning has ended up. The WHO explicitly treats disability as arising from interactions between a health condition and personal and environmental factors rather than locating it entirely either within the individual or within society.

I would then add two further perspectives.

Neurodiversity asks a normative question: even where someone is different, should that difference actually be regarded as something that needs correcting?

And what I will call the administrative or bureaucratic model asks a different question again: how does a continuous, complicated set of human needs become legible to a government that has to decide who receives resources?

Together these give a more complete picture of autism than any one model alone.

2. The medical model

In a simple form:

A person has an impairment or disorder that produces limitations. The appropriate response is diagnosis, treatment, rehabilitation, education, care or some other intervention directed substantially at the individual.

Applied to autism, the causal story might look like:

neurodevelopmental differences → difficulties with communication, sensory processing, executive function, adaptive functioning, etc. → disability

Consider an autistic person who cannot reliably communicate pain, experiences severe sensory distress, cannot safely navigate roads alone, has major sleep problems, cannot manage money or food preparation independently, or requires substantial help with everyday living.

Those difficulties cannot plausibly all be explained away as discrimination or poor social design.

The medical model therefore has important strengths. It takes impairment seriously. It allows us to investigate causes and mechanisms. It legitimises treatment of problems that cause suffering. And it recognises the enormous heterogeneity contained within the autism diagnosis.

This is particularly important for autistic people with intellectual disability, epilepsy, severe communication difficulties or very high support needs.

A theory of autism that leaves little conceptual room for intrinsic impairment risks marginalising precisely the people who need the greatest amount of support.

But the medical model can also (and does also) go badly wrong.

It can turn difference into pathology merely because it departs from the statistical norm. It can make normalisation the objective rather than wellbeing. And it can locate every problem inside the autistic person even when the environment is generating much of the difficulty.

A child who cannot tolerate a noisy, chaotic classroom might be described as having poor emotional regulation.

But perhaps the classroom is an extraordinarily hostile sensory environment for that child.

Teaching the child to tolerate it better is one possible intervention. Changing the classroom is another.

And the fact that a behaviour is recognisably autistic does not itself tell us whether changing it would improve the person's life.

I tend to ask the question, can we bring the world closer to the person as an intervention? And also, how much of the challenge is situations in the world / society / environment rather than the person?


The classic social-model distinction is between impairment and disability.

Very roughly:

People have bodily or cognitive differences. Society disables them when environments, institutions and expectations are designed around people without those differences.

The influential British social-model tradition emerged from disability activism in the 1970s, particularly the work of the Union of the Physically Impaired Against Segregation.

Applied to autism:

autistic characteristics + poorly matched social environment → disability

This produces a very different set of questions.

Instead of asking:

“How do we make this autistic child behave more normally?”

you might ask:

“What is it about this school, communication system or expectation that makes functioning unnecessarily difficult?”

That shift is genuinely powerful.

An autistic person may struggle enormously with an unstructured verbal meeting but function exceptionally well when information is written down beforehand.

Someone may be unable to work effectively in an open-plan office but perform extremely well remotely.

Someone who communicates unusually may have considerably more understanding than observers infer from their speech.

The social model consequently highlights reasonable adjustments, accessible environments, alternative communication, predictable routines, sensory accommodations, anti-discrimination and institutional redesign.

It also guards against an important conceptual mistake:

unusual ≠ undesirable ≠ pathological

Some (arguably many? can we argue all? ) autistic characteristics are simply differences.

Intense interests, preference for routine, unusual communication styles or reduced interest in conventional social rituals need not themselves be things that ought to be “fixed”.

4. Where the social model runs into trouble with autism

The criticism:

Some disability is intrinsic to impairment, rather than wholly socially produced.

Imagine the most autism-friendly society realistically possible.

There would still be autistic people who could not independently cross a road safely, communicate urgent medical needs, regulate overwhelming sensory experiences, manage money, prepare food or live without substantial assistance.

Changing society could reduce their disability enormously.

It would not abolish it.

This matters because an excessively strong version of the social model can inadvertently erase people with the greatest support needs.

Tom Shakespeare's influential criticism of the strong social model makes a related point: the sharp conceptual separation between bodily impairment and socially produced disability becomes difficult to maintain once we recognise that impairment itself can restrict people's lives. The social model remains an extremely useful corrective to medicalisation without necessarily being a complete causal account of disability.

Autism also creates a second problem for a purely environmental explanation: people's accommodation needs can conflict.

One autistic person requires silence; another constantly seeks sensory stimulation.

One needs rigid predictability; another finds routines oppressive.

One communicates best through writing; another cannot read.

There therefore isn't necessarily an “autism-friendly environment” analogous to installing a wheelchair ramp.

Autism involves multiple dimensions, and accommodations have to be individualised.

Where the medical model runs into trouble

The corresponding mistake is to treat observed difficulty as though it directly measures intrinsic impairment.

Conceptually:

Observed disability = individual characteristics × environmental demands

rather than simply:

Observed disability = severity of autism

The multiplication sign is metaphorical, but the interaction is the important point.

Suppose an autistic teenager functions badly in school but substantially better at home with one-to-one teaching, written instructions, predictable routines and breaks.

A crude medical interpretation might be:

severe autism causes educational dysfunction

A crude social interpretation might be:

conventional schooling creates the disability

The evidence may support something closer to:

There is a genuine neurodevelopmental difference whose disabling consequences vary dramatically depending upon the environment.

That is a much more useful causal model.

It also explains why the same person can appear profoundly impaired in one setting and strikingly capable in another.

This distinction between underlying capacity and realised performance is explicitly present in the WHO's ICF framework: what someone can do and what they actually do in their current environment are related but distinct outcomes.

6. Neurodiversity adds something different

I would distinguish the social model from neurodiversity, although they overlap.

Neurodiversity introduces an additional normative proposition:

variation in human cognition is not automatically pathology.

That seems broadly right.

But there are stronger and weaker versions.

The weaker claim seems strong to me:

Autistic traits should not be treated as deficits merely because they are atypical.

The stronger claim:

Autism is simply a difference rather than a disability or disorder

is much harder to sustain across the entire autistic population but could have a claim amongst some.

Autism is unusually heterogeneous.

Someone living independently, working successfully and mainly encountering difficulty because social conventions favour neurotypical communication has a very different relationship with autism from someone requiring lifelong continuous assistance.

Trying to force both experiences into either “disease” or “difference” throws information away.

Robert Chapman's work provides one of the more sophisticated philosophical versions of the neurodiversity argument. Rather than simply denying impairment, he argues for an ecological conception of mental functioning in which individual abilities have to be understood partly in relation to the wider social environment in which they operate.

A useful recent overview by Steven Kapp similarly argues that the neurodiversity movement and the medical model need not be simple opposites. In practice, neurodiversity proponents can support individual interventions that improve quality of life while rejecting normalisation as an end in itself.

That strikes me as a much stronger position than either “everything autistic should be treated” or “nothing autistic should be treated”.

7. A better causal model

Perhaps I would suggest an interaction model.

Intrinsic characteristics

Neurodevelopment, cognition, sensory processing, language, executive function, motor abilities, emotional regulation, intellectual ability and co-occurring conditions.

↓

Environment

Noise, complexity, predictability, communication style, social expectations, educational structure, employment practices and physical environment.

↓

Person-environment interaction

The demands placed upon this particular person relative to their capacities.

↓

Assistance and adaptation

Human support, assistive technology, education, treatment, environmental adjustments and social care.

↓

Outcomes

Independence, distress, relationships, learning, employment, safety, wellbeing and flourishing.

This gives us a much better practical question than:

“Is autism a disability or merely a difference?”

Ask instead:

“What is preventing this particular person from flourishing, and which lever is best changed?”

Sometimes the answer is the environment.

Sometimes it is skills or treatment.

Sometimes it is ongoing human support.

Sometimes there is nothing that needs changing at all.

Usually it is some combination.

8. An economic way of seeing the problem

There is also a useful resource-allocation perspective.

Suppose someone has difficulty doing X.

There are broadly three margins of adjustment:

Person → Environment → Assistance

You can invest resources in:

  1. changing the person's capabilities;

  2. changing the environment;

  3. providing another person or technology to bridge the gap.

The best combination depends on the particular difficulty.

If £500 of assistive technology removes a communication barrier, insisting on years of behavioural training could be both expensive and unnecessarily burdensome.

Conversely, if learning a particular skill substantially increases someone's future autonomy and can be learnt without excessive distress, saying “society should simply accommodate this” could deprive them of something valuable.

And sometimes neither adaptation is sufficient.

Society simply needs to provide care.

That last category gets insufficient attention in some versions of the social model.

Dependence on other humans is not necessarily a policy failure. (see my podcast conversation with disability activist David Ruebain on interdependence here)

Some people genuinely need substantial lifelong assistance.

The relevant comparison is not independence versus dependence as moral categories. It is which arrangement produces the best achievable life given the person's characteristics, preferences and resources.

9. The administrative or “bureaucratic” model

There is then another layer, particularly important in welfare states such as the UK.

Disability is not only a biological condition or a person-environment interaction.

It also becomes an administrative status.

Governments have finite budgets for education, social care, disability benefits, healthcare, supported housing and specialist services.

Human need, however, is continuous and multidimensional.

Government decisions often cannot be.

At some point an institution must decide:

eligible / not eligible

benefit / no benefit

additional educational provision / ordinary provision

funding / no funding

So the administrative causal chain looks something like:

underlying characteristics → functional difficulty → evidence and classification → administrative eligibility → resources

This is not primarily a theory of what disability is.

It is a theory of how governments make disability legible enough to allocate resources.

10. Why labels become valuable

A diagnosis therefore acquires an administrative function as well as a clinical one.

Government cannot directly observe someone's sensory overload, executive dysfunction, communication difficulties or need for supervision.

It has a problem of asymmetric information.

The person and family know far more about the difficulties than the state does.

But a state allocating scarce resources cannot simply accept every claim without evidence.

It therefore uses proxies:

  • diagnoses;

  • professional assessments;

  • functional tests;

  • reports;

  • administrative descriptors;

  • eligibility thresholds.

Diagnosis can therefore act partly as a signal.

It provides a shared vocabulary and external validation that the difficulty is persistent and recognisable.

Economically, one way of interpreting this is that diagnosis can reduce the transaction costs of demonstrating need.

That does not mean diagnosis is necessarily a formal prerequisite for support (at least in theory….)

But:

“A recognised diagnosis may make it easier to demonstrate and legitimise need within bureaucratic systems”

And many people report that without a diagnosis it is very hard to get support…

11. Bureaucracy changes behaviour

Once categories determine access to resources, people and institutions inevitably respond to those categories.

This generates several predictable effects.

Threshold effects. Two people with almost identical underlying needs may receive substantially different resources because one falls just above an eligibility boundary and the other just below.

Incentives to seek diagnosis. If a diagnosis helps obtain appropriate educational provision, accommodations or benefits, the private value of obtaining a diagnosis rises. This does not imply the diagnosis is false; it changes the incentive to identify and document an existing condition.

Professional gatekeeping. Clinicians, educational psychologists and other professionals become important partly because their assessments convert private experiences into evidence that institutions recognise.

Strategic presentation. Systems organised around demonstrating impairment naturally encourage applicants to explain what they cannot do rather than what they can.

Socioeconomic inequality. Families with more time, knowledge, money and confidence may be better able to commission assessments, obtain reports, understand bureaucratic language and appeal adverse decisions.

Path dependence. Once support is conditional upon demonstrating continuing impairment, families may reasonably worry that evidence of improvement could threaten the support partly responsible for that improvement.

None of this requires fraud or bad faith.

It follows from institutional incentives. There is a large literature on public choice theory and other literature that accounts for this… (basically: Once rules attach resources to categories, rational actors respond to the rules as well as to the underlying need the rules are trying to measure.) And these impact both the state actors and the non-state actors…

12. The paradox of the deficit narrative

This creates an uncomfortable tension between the social and administrative models.

The social model says:

Do not define disabled people by their deficits. Look at capabilities and change unnecessary environmental barriers.

The bureaucracy often says:

Explain precisely what this person cannot do, demonstrate that it is serious and persistent, and provide evidence. Otherwise we cannot justify allocating resources.

So families can find themselves having to construct what might be called an administrative deficit narrative.

To obtain the resources that allow someone to flourish, you first have to document everything that prevents them from flourishing.

This can feel dehumanising.

But it is important not to caricature the state either.

There is a genuine allocation problem.

Resources are finite. Need is not directly observable. Eligibility creates incentives. Some form of assessment is unavoidable.

The administrative model points to a more general phenomenon.

Human variation is continuous. Bureaucracy needs categories.

Governments cannot allocate £7,842.37 of educational support because someone's underlying level of need happens to sit at exactly 7.84237 on some objective scale.

There is no such perfect scale.

Instead institutions construct categories, measurements and thresholds.

Once those measurements determine resources, the measurements themselves acquire value.

This has something of a Goodhart's-law character.

A diagnosis begins partly as a way of describing or identifying need.

Once diagnosis or documented impairment becomes useful in accessing scarce resources, individuals and institutions have additional incentives to obtain and preserve the category.

It means the observed system is an equilibrium produced jointly by:

human characteristics + social environments + administrative rules + behavioural responses to those rules.

That is a richer explanation than either “the disability is entirely inside the person” or “society creates the disability”.

How to synthesise?

Weight the different models according to the question being asked. So you might get…

Why does this person process the world differently?
Medical and developmental science.

Why are they struggling so much in this particular setting?
Social and interactional models.

Should this unusual behaviour actually be changed?
Neurodiversity, wellbeing and the person's own preferences.

What adjustments should a school or employer make?
Primarily the social model.

Could medication, therapy, education or skills training improve life?
Medical and developmental approaches.

How much ongoing support does this person require?
Functional and interactional assessment.

Why do diagnostic categories sometimes become so important to families?
Administrative incentives and resource allocation.

What should ultimately be optimised?
Flourishing, wellbeing, autonomy, relationships, participation and safety.

So overall synthesis is:

Autism is a real neurodevelopmental difference that can produce intrinsic impairments, but whether and how severely those impairments become disabling depends substantially on the person's environment and available support. Society then overlays an administrative system that determines which of those needs become recognised and resourced.

The normative principle I would put above all of this is:

The objective should not be normality. It should be flourishing.

That resolves quite a lot.

If an autistic person's harmless repetitive behaviour makes other people uncomfortable, there is little reason to train it away merely to make them look normal.

If inability to communicate pain is causing suffering, improving communication is enormously valuable.

If school is producing distress because it demands a particular form of social interaction that isn't necessary for learning, change the school environment.

If learning a skill would genuinely expand someone's future choices, help them acquire it.

If someone cannot safely navigate independently despite every sensible environmental adjustment, recognise the impairment and provide support rather than pretending society alone created the disability.

And if someone requires lifelong human assistance, that does not make their life less valuable or represent a failure of inclusion.

(while easy to say, m and harder to put in practice)

For autism, therefore:

The medical model is descriptively necessary but normatively insufficient.

The social model is morally and institutionally corrective but descriptively incomplete.

Neurodiversity rightly challenges the assumption that difference itself requires correction, but cannot make severe impairment disappear by changing the language used to describe it.

The administrative model explains how genuine needs become categories, entitlements and resources, while also creating its own incentives and distortions.

A defensible position is consequently pluralist:

accept difference, accommodate difference, treat suffering where treatment helps, teach useful capabilities where worthwhile, provide technology or human assistance where it bridges limitations, and provide care where substantial limitations remain.

The relevant outcome….

how good a life they can actually have.

Further reading

For the original social-model argument, the short UPIAS Fundamental Principles of Disability is historically important and unusually direct. Read UPIAS, Fundamental Principles of Disability

For a serious critique of an overly strong social model, Tom Shakespeare's “The Social Model of Disability” is probably the most useful short counterweight. It preserves the social model's insights about barriers while challenging the claim that impairment itself contributes nothing to disability. Read Tom Shakespeare on the social model

For the interactional middle ground, the WHO's ICF is worth knowing because it formalises disability as an interaction between health conditions and contextual factors, rather than choosing either a purely medical or purely social account. WHO International Classification of Functioning, Disability and Health

For a sophisticated neurodiversity argument focused on autism, Robert Chapman's “Neurodiversity and the Social Ecology of Mental Functions” develops the ecological case rather than simply asserting that autism is “difference not disability”. Read Chapman on neurodiversity and social ecology

And for a very concise recent attempt to reconcile neurodiversity with legitimate individual intervention, Steven Kapp's 2026 World Psychiatry piece is particularly useful. Read Kapp, The neurodiversity movement vs. the medical model of autism

Also:

There are several established models close to the interaction model, and they differ mainly in emphasis:

  • WHO International Classification of Functioning, Disability and Health (ICF): probably the closest mainstream formulation (as mentioned above). Disability is a dynamic interaction between a health condition, personal factors and environmental factors. It explicitly tries to synthesise medical and social models rather than choose between them. World Health Organization

  • Nordic/relational model of disability: emphasises person–environment mismatch. Disability is contextual and situational rather than simply a fixed property of the individual.

  • Person–Environment Fit / Person–Environment–Occupation models: common in psychology and occupational therapy. Functioning depends on how well an individual's capabilities fit the demands of a particular task and environment. This gets especially close to our formulation of person × environment × task → realised functioning.

  • Capability approach (Sen/Nussbaum and later disability scholars): shifts the endpoint from “normal functioning” to what someone is genuinely able to be and do. That fits our idea that the objective should be flourishing rather than normality.

  • Disablement-process models: retain underlying pathology/impairment but explicitly model environmental and personal factors as modifying whether impairment becomes actual disability.

Penny Wincer, Charlotte Adorjan: caring, love and untold stories

My friend Salima Saxton has a podcast with Jennifer Cox. In this episode, she interviews Penny Wincer and Charlotte Adorjan. We know Penny and Charlotte - in part - because they are “our people”.

Our people because they have lived experience of caring. There is an autism thread running through this conversation. Caring is often unfair. It’s very often gendered. The burden falls on the women.

These are also the stories that are mostly untold. The untold stories of women, and carers. Untold stories of love and care. Untold stories of womens’ experience and the complexity of motherhood.

This is important that I’ve made a transcript of the conversation below (it won’t be entirely accurate as I’ve had to use automated transcription) but it should give you enough sense. You can also listen above.

"I've had to embrace the fact that I am now a carer. It's really hard to get your head around that, and the feminist voice in my head is screaming 'Don't give up your career'. But actually, what I want to do is try to make it work for me, rather than me trying to change it. 

Welcome to 'Women Are Mad', where we invite women to bring their anger into everyday conversation. We're all feeling it, let's get together to work out what to do with it. I'm Jennifer Cox and I'm Salima Saxton.

'Riddle me this, Salima, with your Cambridge degree and your excellent brain, why have countless successive governments failed to solve the caring problem of this country?' 



'When you say "this country", you mean Britain?'



'I mean Britain, because I've got the numbers for Britain. They're bastards. I'm sorry to be cynical, but I have the answer because I've got a sheaf of papers in front of me that I'm rattling away. There are 1.25 million sandwich carers in the UK as recorded. Sandwich carers are people caring for an older relative as well as a young family. I know for a fact that the actual number is higher because so many people don't think of caring as an identity. Instead, they think of it as just a natural part of life or an obligation, which is partially why the government hasn't gotten to grips with providing a real solution. The other reason is that 68% of these sandwich carers, remember these are just the recorded numbers, are women, and women are not permitted to speak up about their dissatisfaction or rage. They'd be seen as uncaring, as cruel, shirking their responsibilities. But if you put the problem back to these women who are voiceless, it sorts the whole thing out. It's gone under the carpet, we can leave it there, and that's the answer to my Riddle Me.' 



'Okay, well, thank you for answering your riddle. I'm very pleased that we're doing this special episode actually, this week, then. Related to Carers Week?'



'Yes, so we must say, this is a British thing, isn't it? It's the first week of June every year: National Carers Week. So, who have we got with us today?'



'Our first guest is Penny Wincer, she's an acclaimed author, a book coach, a podcaster herself of the brilliant podcast 'Not Too Busy To Write'. She's a parent, and she's a carer. Oh, and she's recently swapped hometowns actually with our fellow guest, Charlotte Adorjan. Charlotte hosts the brilliant 'Village Lantern' podcast and she's recently moved with her family from London to Melbourne. Both her children, Essie and Woody, have autism and as a family, they've launched "Woodism", which is an award-winning art collaboration between Woody and his dad who has turned Woody's unique phrases into linocut prints. My particular favorite one is "I love you all the way to the end of counting." Thank you so much for being here, we really appreciate it. Should we dive straight in? I'll go with the first question, the first formal question: What makes you angry? Penny and Charlotte, you should go first. Penny, go for it.'



'I've been really surprised, actually, by how the older I get, the angrier I get about everything. There is this narrative, I think, that as you get older you get - there's a lot of talk about "oh I don't give any shits anymore". Actually, I do give a shit. I give a shit about a lot of things.



 And so of course, that means lots of things make you really angry. The more life experience we have, the more injustice we see around us.'



'Yeah, yeah. Charlotte?'



'Yes, I mean this whole kind of angry women thing. There's that quote "if you're not angry, you're not paying attention" or something. And I feel like the people that aren't angry are probably the men, to be honest. Or they're the ones that don't directly get affected by the issues that we are facing. Do you think that it's actually that there were women, many women, I would say, who sort of forgot to get angry and weren't encouraged to develop a vocabulary for it? So it just sort of stays there in a nice package kind of under the surface and normally gets conveniently diagnosed as something else, like anxiety, depression, migraines. And this is why we've started this, essentially. Because there's so much mistaken rage out there. Also, it's been interesting, some of the response actually, because some people have said, "You've never struck me as an angry person, Salima". I think we're all much more multifaceted and able to express anger in many different ways. And actually, if we were all listening and paying attention to every other human, we could, I think, we would all connect with some kind of anger within us. Which brings me to it being National Carers Week, actually, as well. But, Charlotte, continuing on with what you were initially saying, does any of that anger come with navigating being a carer as well as being a parent, as well as being a woman?'



'Well, I think it's funny because I've had quite a lesson from my autistic kids on you know, they really hate unfairness. Their gauge for fairness is really solid. They hate being wronged. And to be honest, a lot of my rage comes from the world not being a level playing field. And if you add in things like being an unpaid carer, or the fact that I'm a copywriter in advertising by trade and it's a very male-dominated world. And you know, when I left my job, my boss, I remember him saying "You know when I think of a word to describe you, I think angry." And I was like "Oh my God, my 22-year career and this is the one word." And I thought, "Well yes," because it was never a level playing field and I was always pissed off because I never got the good briefs or I was always having….. To say, 'Well, why am I doing a four-day week now I've got children, when the dads, when they start having babies, they don't put their hands up for a four-day week?' You know, why? Like, what do they not want to see their children? Who's looking after their children?



So, I've always worked for myself since I was 24. When I went on maternity leave (and I use this term very loosely) I did not take maternity leave with either of my two children. But, it was interesting because I was spending a lot of time with other women who were on maternity leave, right? Because I met through my local neighborhood, a fantastic London neighborhood where we had to organize our own kind of meetups. There was loads of stuff going on.



I made some really good friends that year because there were women around, which was awesome because they were taking maternity leave. I was not jealous of them one bit because I was dipping in and out doing a bit of work, coming back and hanging out with them, hanging out with my child, going back to work doing a bit of back and forth. It was great. It was the dream, basically.



But they all went from really intense full-on careers to looking after a baby 24/7. First of all, I was not jealous of that, those two extremes. And then they were having to make the choice between going part-time and basically still having to do the same job because otherwise, they would never get anywhere in their career but earning way less money, or they would go back full time and they would spend all their money on care for their child and also feel really, really guilty and also not really want to be away five days a week from their child either.



I just felt like there were no good choices there. It just felt like there were no good choices in any of those. And if you take the time, then you take the hit. Your career takes the hit because you lose all of those years while everyone else is still kind of slogging away trying to make it work.



Absolutely. And I mean, even I, you know, I was so much more affected financially by having kids than I thought I was going to be. I was the higher earner. I'm not married anymore, but at the time, I was the higher earner per day and I thought, well, that means that we prioritize me and my work. And then we did, at first, and then slowly over time and a second child, suddenly it's not quite so much of a priority anymore, even though I was the higher earner initially. And I think that's actually really, really common as well.



And I think what I didn't understand when I was a younger woman was the hit not just in going part-time but the massive hit you take on your career for the rest of your career by slowing down a bit at that point but also on your pension. You know, the difference between women's and men's pensions since the pension cap is unbelievably huge, frighteningly huge. Yes, and it's because of the care work that women do. It's so true.



And then the care work that we do later at the end of the career because the numbers there are still startling to stop your children. I mean obviously, you know, Charlotte and I have disabled children who will require more support. But even if you don't have that and your children grow up, it's very likely that if you were the one at home caring for children, you're very likely to be the one that steps in when mom and dad, and mom and dad-in-law need that support because, well, you've already worked part-time for years, so



 why wouldn't you step up and do that? You know, there's no catching up from that, you become the go-to person at that point.



I think also the lack of catching up comes down to identity and confidence, right. Now having stepped out as an actor for well quite a few years when my three kids were young, launching myself back in has required an iron will, a kind of rhino skin, and what I just keep thinking, 'Well, you know, you just, just now or never.' So then I kind of oscillate between like wild abandon, enthusiasm for what's going to happen and it's happening, and panic.



Yeah, I think it's underestimated the impact of taking either slowing down or taking a break from a career on what that does to you and what that does to other people's view of you.



I was a photographer for many years, and when I first had children, that was my job. And it is actually a very masculine role, you know, there are now quite a few female photographers, but actually, when I started out an assistant there was hardly any. Even in the early 2000s, there were only just really just coming up, and I was the one that definitely on set I worked with loads of women, but I was the one on set who had the kind of traditionally masculine role.



So when I had my second child, I do feel like I disappeared. People assumed I wouldn't work. I lost work because people just didn't ask me because I'd had a second child.




*



I'd love to know where your ambitions lie for both of you right now. Do you have strong personal ambitions, Penny, Charlotte, unrelated to anybody else? It's very interesting because I've changed my entire life. I've moved from London, where I was born and, I think, I've only ever lived a mile from where I was born to literally the other side of the world. I'm in Penny's hometown now, weirdly, and she's in line which is nice.



I've changed everything and, to be honest, it's difficult because you want to cling on to things that you knew and loved. I had this career in advertising, a 22-23 year career that I worked really hard for. But the whole time, I was fighting a system that wasn't set up for me to be in. So yes, it has a quite male, Mad Men kind of vibe, and people would say it's changed a lot but not if you've got children or anyone with additional needs that you need to care for.



I'm meeting so many amazing women that have insane careers and they've had to become carers and reinvent how they work. Maybe that's where the multi-hyphen method has come from. So many women have lots of strings to their bows now because to be honest, we can't put all our eggs in one basket anymore. We need flexibility to the point of breaking. I mean, we never know day to day. Like this morning, I was woken up by my daughter at 2 AM and that was the day.



So if I had to go and do a day in an advertising agency coming up with amazing ideas, writing brilliant stuff, and presenting to clients, I'd be a dribble of a person and no one would get the best of me. It's really difficult but I've had to kind of change my entire world. 



Now, I think maybe I need to reinvent what I see as success. Actually, for me now, success is being able to give my kids the time they need. I think this is the issue when you've got children who have a disability. It doesn't necessarily get easier the older they get. Often it can get harder, and you're needed more. 



I'm now dealing with lots of mental health issues, things I never thought I would have to deal with as a mom. There's none of this in the kind of baby books about how do you talk to your child who wants to kill themselves. It's really difficult, so you've got to be there. You can't be like, "Sorry, I've got to go off to a meeting about a chocolate bar and sell a chocolate bar to millions of people." It's really difficult. 



So not only has my ambition changed from being about me, but I also need to make money for them because they're going to need financial stability growing up. It's almost like I have to decide where to put my energy. I have such little energy left for the bit that needs to make me money. Actually, I'm asking myself, "Why am I giving it to huge corporations who are going to make billions off my ideas, whereas I'm getting an ulcer and a child who's sobbing and needs me?" It's really difficult, so it's a bit of an epiphany for me.



Silencing is the problem. If these are your priorities, then you must be allowed these priorities and people need to hear them and listen to them. Yes, I mean, I think that's it because a lot of carers' voices just get squashed because A, we're really tired, and B, no one really wants to hear it. They're like, "Oh, that sounds really hard but anyway, cool, I'm just gonna pop off."



That's why you got called angry. I think it's because it was really unwanted. And if you explained it to people, they would just be like, "This person's moaning." And you're like, "No, no, I just need to get across why today is quite a hard day."



Coming to the other side of the world, weirdly, I've kind of formed this underbelly of carers, my kindred spirits. They're all from all walks of life. The other day, I was in the supermarket and I got this scream across from the other escalator. It was a friend of mine. She's a Jewish mom with two autistic children. She fell into my arms sobbing and she's like, "I can't do this anymore." We had a moment in the supermarket and everyone was kind of going around us. I reassured her, telling her, "You can do this. You're amazing."



Her day was basically going to be spent coaxing one of her children off the sofa to eat because her kids were in rock bottom autistic burnout. After we buoyed each other up, she went off. I thought to myself, "These are my people."



These are my people, where there's no rage anymore. The anger's gone. We don't have time for anger; we're too exhausted to even fuel the anger. It's just, "I need you, help me. Here's what you need." 



Last week, when I was confined to bed with the flu, I texted a friend and told her I was unwell. She immediately offered help, "I'm bringing Bolognese." It's not about sympathy or superficial comfort, it's practical help, a question of, "What do you need? Here's what I'm going to do." These are the people that understand you. 



When I'm with these individuals, the rage dissipates, because we're on a level playing field. There's no pretense, no small-talk about Johnny's tennis lessons. Our kids aren't involved in such activities like everyone else. We're just on a level playing field, and that's when my anger subsides. That's when I feel the most at peace and the most like myself. 



This is a new development, something that's only happened recently since I moved to the other side of the world. Perhaps when you have to make new friends, you end up finding kindred spirits more easily. 



Now at 46 years old, I've observed shifts in my support systems and friendships. As you become caregivers yourselves, have you noticed a change? Have surprising people entered or exited your lives? 



What I've found is that some friends here, friends of my husband since we moved to Melbourne, have gone out of their way to understand the type of autism my children have—PDA, Pathological Demand Avoidance. They've read up on it and followed the same people as me on Instagram. They've put in the work, and that is a mark of a true friend. 



My experience, on the other hand, has been interesting. Since my schedule isn't flexible due to my son's needs, I can't meet up with friends outside of my immediate neighborhood. It's stressful to take him anywhere, so I stopped doing that a long time ago. Consequently, I don't see my friends that don't live close by very often.



Nevertheless, the friends I've made in this neighborhood have been incredible. Though I didn't make friends through my son's peers, I made incredible friends through my daughter. These friends have embraced my son, known him since he was quite young, and even help out when we go on holiday. 



Interestingly, I was forced to ask for help. As a single parent, there are times when I literally cannot manage everything on my own. For instance, when my daughter was invited to a birthday party but was too young to be dropped and left, I either had to bring my son with me, or someone else had to pick her up and take her. It's situations like these that make you ask for things you wouldn't ordinarily ask for.




"If I hadn't been in that situation, I would message people, 'Oh, who's going to so-and-so's party? Can anyone else swing by and pick up Agnes on the way?' And someone would be like, 'Yeah, sure. No problem at all.' Then, I'd take her there with my son, and my son maybe would stop coping after half an hour. I'd say, 'I'm going to skip out. Can anyone else drop her home?' And there'd be like three volunteers going, 'Yeah, we'll drop her home. No problem.' 



We're in this really quite incredible community here where people just stepped up, but I had to learn to ask. I learned to ask, and actually, this comes back to my other caring experience. I really, really, really, really hate not being independent, and part of that comes down to the fact that I was a young carer as well. I cared for my mom when I was a teenager.



If you meet and speak to any young carers, one of the things you'll find is that they are hyper-independent. I had to learn how to look after myself at a very young age, so asking for help does not come naturally. Like it doesn't for a lot of women, but particularly for someone who didn't -- I would say -- was not being looked after by anyone from when I was about 12. 



Arthur has forced me to confront that and the challenge it's about. And if he hadn't made me do it, I'd be having to face that when I was older and needing to receive care myself. Because we don't like the idea of having to receive it. We're very scared of having to receive it because we see it as something that is something that none of us want. 



We talk about it as being the worst thing in the world to go into a home where other people would care for us or to have our child constantly having to care for us. But, it's a really natural human thing to happen that we need care towards the end of our lives if we're lucky enough to live a long life. 



But there is also a real problem there because there is a natural desire to care, but I think that desire is exploited in women. Far fewer men are expected to, and women are doing it at least ten years earlier. And they're often doing it for much longer. I think double the amount of time that men are doing it, and in terms of the people who are doing it for more than 35 hours a week, it's 75% women.



To replace unpaid care in the UK would cost something like 162 billion. The amount of money that unpaid carers contribute to the economy is the equivalent of running a whole other NHS. So, if there weren't unpaid carers, the whole society would collapse. It would completely crash. 



I don't know what the figures are now. They're much higher because there are a lot more carers now than there was pre-pandemic. There's a lot more people living with chronic illness now.



If someone is a carer and they're listening to this right now and they're struggling, the thing you have to do first is admit that that's what you're doing, that you're a carer. It can take people years to admit that that's what they're doing. They don't want to see it. 'I'm just a daughter, doing her job, doing what's expected.' 



But the first thing you have to do is admit that this is work. It is unpaid work, but it is care work, and it's on top of the relationship you have



 with that person. It complicates the relationship you have with that person. They might hate receiving that care, for instance. This can be a very complicated relationship.



So, I think the number one thing you can do first is always admit that's what you're doing. Like with a lot of things, as soon as you kind of admit it, then you can open up to other things, like maybe admitting that you might not be able to do it all on your own. Which can be a really difficult thing because sometimes people, even though it's very difficult, want to be able to do it all on their own, but physically can't anymore without some serious consequences.



What would you say, Charlotte? Yeah, I mean, and also connection with people that are similar to you, because silence is really dangerous. Penny and I are both writers, and we're obsessed with telling stories. There's a reason that women need to tell stories because otherwise, it all just becomes unsaid it gets lost.

Beautiful Young Minds, X + Y

I don’t get round nowadays to watching much tv/movies  but I made some time to watch X+ Y and the documentary that the film was based on. This was partly because James Graham is one of the most admired British playwrights and partly because the film dealt with an autistic spectrum character.

Of note are the parts of the film directly inspired by the documentary. The mother character is well written and portrayed with great humanity (if that’s the word) by Sally Hawkins. It also has a sympathetic ASD character as well as a less sympathetic AS character although even there the less sympathetic character has some redemption (in the audience eyes, at least) with an entirely cringe-worthy and socially inappropriately timed Monty Python skit - he can’t fit in socially - he seems to not even like maths and you have an impression his “gift” as perhaps as much curse as gift.


If you’ve met one person with autism then you’ve met one person with autism.


This adage is popular as it hints at the truism that all humans are individual and knowing one label won’t necessarily tell you anything much about that person. It riffs on that idea as many of us fall into stereotype thinking - quick pattern formation that can turn out wrong.


What unites us is greater than what divides us


We’re all different, all unique, and all equal. No one in our societies should be left behind or pushed aside because of who we are, or where we come from. Yet some of us are still treated differently and unfairly simply because of who we are.


And so the counter point is that many characteristics on the autistic spectrum are shared and can be understood together.


“People possess different points in an N dimensional space where N is a reasonable large and positive integer.”


This - to me - is hilarious and true and tragic and comes from the original documentary. People with a reasonable sympathy with a certain level of maths will understand that language but the average person is lost.  This makes the phrase coming from someone atypical in social interaction as partly profound and partly tragic. He describes a truth of the world in a logical language to a typical audience who do not understand.


In England, “being clever, you are rejected” - this is another comment from the documentary partly echoed in the film. 


Interestingly, I find this is reflected in directly in the English language. English has so many phrases for being “too clever”:


  • Smart Alec

  • Clever Dick

  • Too clever by half

  • Clever clogs

  • Smarty pants

  • know-it-all

  • Boffins, nerds, eggheads 


And even crafty, sly, cunning - come with dark overtones 


Is this a jealousy of “otherness” or this type of intelligence and knowledge ? Is it a fear of characters or things we can not understand - the unknown ?


To me, it’s likely a mix - a spectrum - of these items we fear and disdain things we do not understand and we belittle them to make ourselves feel better.


The documentary and hence the film suggests that the Chinese do not have this same disdain of cleverness, nor the same disdain of maths.  The film has this as a small sub-theme. Although I’m unsure.


The film ends on a romantic high. True life has not followed such a straight path, where the real girl has left back to China and not stayed married, although as of recently the boy seems to be happily with another.


While the documentary and film only looks as a small slice in the rich humanity of autism, it’s an accessible and charming slice and it is a part of our untold stories.


Coda, my maths grasp is enough that if I recall correctly scored about a bronze (it might even have been silver)  back in 1995 in the Junior Mathematical Challenge - this was a score in the order of 20 out of 50 in maths problems that look a little like this. 

A 2015 interview of Daniel Lightwing.

Details on X + Y. Wiki

The Youtube of the documentary Bright Young Minds.


A look at smart alec words.