The Deficit Model - Part 2

I was having coffee with a friend recently. She was reading up on being a 'highly sensitive person' and was quite interested in the difference between that and autism. I'd been in a similar situation in 2020 when a person, identifying as a 'highly sensitive person' asked me the same question. In both cases - despite the four year gap and the amount of knowledge I now had and the amount of learning, especially around the neuro-affirmative model, I'd done, I explain my autism based on the deficit model and my struggles. Do'h! 

In mid-2023 I was having a post-identification support session with someone and they said - like so many people before them - "I feel like an imposter, like I'm not autistic enough to warrant this label. However, I have a very stressful project coming up at work and I feel certain it's going to push me to my limits and my autism will come out and it'll be easier for me to accept it."

I knew 100% where she was coming from. Just like the equally common phrasing, post-identification, when a person suddenly feels 'more autistic' - things they were able to do and the ways they were able to push themselves before, they now can't.

Again, I get this statement 100% as well. Don't you?

The problem...? 

They are statements based on the deficit model of autism - that autism is the thing that's wrong with us and we can only accept it when we're struggling and our level of struggling indicates if we're feeling more or less autistic on any given day.

And my internalised ableism was preventing me from catching these sorts of statements for a long time, as well as steering the conversation when I had to explain autism to my friends, and I did so based on my struggles (goddammit). 

(By the way, it fills me with shame to admit to these things. But I was once told by another autistic person that it made them feel better about their own internalised ableism and that's why I'm open about my imperfections and flaws - to role model that this is the norm and normalise imperfection. I love and celebrate imperfections as it makes the world a much easier place to live in... but I still feel embarrassed when I mess up regarding things as important as this).

If or when we identify with the deficit model, we’re not the problem. Not least because you’re allowed to identify with the deficit model. If that makes sense to you I’m not the autism police who gets to state what you can and can’t identify with. 

What I’m suggesting is that we take a critical look at why we identify with that model and whether there’s a potential chance we might be a little bit brainwashed by popular rhetoric. 

If a lovely, considerate and kind person think they’re a rubbish, undeserving and worthless person (as if often the case with the people I work with who have chronic low self-esteem), it’s not the person’s fault. It’s a narrative that’s been created in their heads by external voices – often by parents or other caregivers or authority figures from our childhood, or sometimes, due to having been in abusive relationships later in life. 

The person considering themselves unlovable is not the problem. How they’ve been manipulated into viewing themselves is the problem. 

Lipsky pointed out in 1987 that internalised racism can make Black people agree with racism and oppressive stereotypes about themselves and other Black people. Again, this is not the fault of Black people, and they’re not the problem. The racist system they’re part of, stemming back hundreds of years, is the problem. 

When a queer person feels ashamed of their queerness, they’re not the problem. The homophobic, anti-LGBTQIA+ system they’re part of is to blame. 

When a suppressed or minority group that’s facing discrimination internalises the negative beliefs held against them, they’re not the problem, and they’re not at fault. 

When I, as a dyslexic person without aid, went through the school system in the late 80s and 90s and I was made to feel stupid by teachers because I couldn’t achieve the same results as my non-dyslexic peers, I grew up believing I was stupid. When my dyslexia was officially recognised when I was 28, during my second year of university, I felt deeply embarrassed that I now had a piece of paper that officially stated that I was stupid (this, obviously, isn’t true, but that’s what I believed due to how I’d been treated and how the world still viewed having a ‘learning disability’). Due to this formal recognition, I now got help. So much so that I felt even more embarrassed that I’d get all this stuff my peers didn’t (a free laptop, extra time, quiet exam room, tutor assistance, etc). I remember the educational psychologist telling me that my whole life, people had been playing football on an even playing field, whereas I’d had to keep up with them, playing up a hill. The help I’d be getting was levelling the playing field for me. 

But my internalised ableism was so fierce that I kept my dyslexia and extra support a secret for years to come. It wasn’t until I started working for a learning and literacy centre and I was around other dyslexic people who were brilliant and capable and lovely that something started shifting in me. Because if I didn’t see them as stupid or embarrassing, I couldn’t very well see myself in that light either. However, as you’ll see in my various ‘P.s.’ on all my blog posts, I’ve been feeling self-conscious and embarrassed about my spelling and grammar mistakes since childhood, not least because online ‘grammar cops’ made it seem like spelling or grammar mistake were part of the seven deadly sins! It wasn’t until I started working on a book about autism and getting to the chapter on masking and unmasking that I realised that my worries about spelling and grammar mistakes and getting help/paying for help to correct them or when simply avoiding showing anyone my writings that that was me masking my dyslexia as if it’s something to be ashamed of. It's not. 

Homo sapiens (the human species we belong to) started evolving some 350.000 years ago (from other human-like animals). Some 41.000 years ago, Neanderthals went extinct. They had lots in common with Homo sapiens, but they couldn't use language - they were non-speaking - unlike Homo sapiens. It wasn't until roughly 5000 years ago that the written word developed. And it wasn't until the 1950 that reading and writing became a norm. Before that, illiteracy rates were the norm. So, a mere 72 years out of 350.000+ of human development has the written word been the norm. My brain's way of processing words isn't the problem. What we've made the norm in such an insanely short amount of time is. And considering how many dyslexic people are amazing storytellers with exceptional memories when it comes to stories (not useless facts) and how many very creative dyslexic people there are - to me, it makes sense that dyslexic people were the historians in hunter/gather societies: The ones to share our ancestors' stories (history) around the campfire and paint the stories of their people on walls. But today, I'm labelled as having a learning disability because I can't conform to the norm, though before I learned how to write, I was obsessed with books and stories, and I'd 'write' stories using pictures or acting them out to my family. And I can't remember the names of key people in WWII or specific historical dates. Still, I can tell you a compelling, engaging and actually interesting (unlike names and dates) story as to why WWII happened, the psychological development at play among both those in power and the people living through it and heart-warming details of how humans come together to support each other and strangers alike when there's a common enemy called War. I can tell you what we need to know and understand to avoid WWIII and how to psychologically survive a war.

How is that not what's considered essential and given the highest grades in school, even if I can't sound out or know how to spell Auschwitz correctly (I had to Google it)?

When we have internalised negative beliefs, we’re not the problem, and it’s not our fault. We’re not born with internalised negative beliefs. We’re born raging narcissists (I joke) because we know what we want and when, and we’re not afraid to ask for it by fussing, babbling, crying or, when necessary, screaming for food, comfort and connection, clean diapers and sleep. 

And no one is born a racist, bigot, sexist, homophobic, ableist or hateful. We learn – via our caregivers, the environment we’re living in (nurture) and the cultural, political and generational system we’re born into that some people are valid and worthy and some are not and whether our needs are welcomed or not and we quickly learn hate and intolerance, even towards ourselves, and we learn to suppress our needs, developing both mental and physical ailments due to this, as well as masking, unlearning sensory and emotional regulation that came innately to us when we were born and that our worth depends on our productivity and compliance (in a previous blog post I called neurotypicals for neurosimplex… I’ve since pondered if the terms should be neuro-conformists…). 

So, when we have internalised the deficit/medical model of disability, we’re not the problem and it’s not our fault. 

However, I recently saw a provocative reel where a person said what I’ve just said (but in a FAR more succinct way – just had to spend several minutes figuring out how to spell ‘succinct’ and looking it up without knowing any of the letters coming after s!) but the content creator added that once you know you’re not the problem and it’s not your fault, once you have the awareness of this, if you keep doing it, it is your fault if you keep doing it (e.g. looking down on yourself). 

I don’t agree. Our brains aren't that simple to change. But I do like a provocative take as it can shake me out of certain mental blockers. But if you could attain new information about your mind that makes sense and is more helpful and healthy than previous beliefs and instantly live based on this new insight, there’d be no need for therapists and you’d be able to read a couple of self-help books and be sorted for life. It’s akin to saying that if you’ve gone for one run and you realised your body loved it, you’ll stay fit based on that one run and never struggle with exercise motivation again. We know that’s not how it works. Even fitness enthusiasts have days where they just want to eat junk food and lie about.

This was a classic, autistic, long-winded* way of saying this: If the deficit model tells you that you have a communication and social interaction deficit and you’ve struggled your whole life to feel understood, speak your mind freely and make and maintain friendships, you might readily agree that the deficit model is indeed true. And I’m not saying it isn’t. I’m saying it’s one truth. A truth based on neuroconformist standards of what good communication and social interaction means, based on neuroconformists’ rules. Rules we’ve internalised as truths for so many years/decades that it can be really hard to uninstall that piece of ‘how to human successfully’ software. But most autistic people can agree that small-talk is boring and feels pointless, that neuroconformist people have a problem with communication because they don’t say what they mean, they use subtext or they’re vague in their expressions (“let’s catch up soon”… when is soon? Do you mean it or is that this weird neuroconformist way of saying we shouldn’t see each other again??). 

Autistic people are being labelled as ‘literal thinkers’ because we take words at face value (if someone asks you what your favourite movie is, apparently the answer isn’t your favourite movie but just movies, in general, you like. When we’re told to maintain eye contact, we’re not supposed to stare into someone’s eyes but just look in their general direction) – but, honestly, autistic people aren’t the problem here; the neuroconformist people are, with their indirect and confusing language use. 

Autistic people are called blunt for being transparent and honest, meaning the ‘non-deficit’ way of communicating is by lying and circumventing the truth – how on earth is the autistic person the problem? Or, even if we look at a non-speaking person (for a long time, referred to as ‘non-verbal’ which is again such BS as non-speaking people show all sorts of non-verbal cues like facial expression, hand movement, writing and so on), they still don’t have a communication deficit. They just don’t communicate the way a neuroconformist person would like them to. The problem isn’t with the non-speaking person but with the neuroconformist person’s inflexibility to be accommodating of others and their rigid conformist way of thinking. 

If you identify with the deficit model, you’re not the problem, it’s not your fault and you’re allowed to if that rocks your boat but for the sake of your own mental health and to make the world a safer place for others, I’d encourage you to critically assess the negative beliefs you have about yourself and wonder if there’s a different story to tell yourself. Not lying to yourself. Well, at least not any more than neuroconformists have been lying to you about your worthiness as a person based on your neurodivergence. 

If a person has been subjected to abuse, we don’t blame the victim (or at least, sane and good people don’t) for reacting to the abuse. We blame the abuser. And we don’t call the abused defective because they’re having a reaction to being mistreated. We work on helping them feel empowered once more, to feel safe in their own bodies and to build trust in the world. But we also understand if that’s a tall order when the world isn’t always a safe place. 

Autistic people have been and are still subjected to a lot of direct and indirect abuse and general mistreatment, even just in the way we’re often infantilised, simply based on being autistic (without a person knowing anything else about us. There’s a good chance that Albert Einstein was autistic – and had people known that when he lived, he would have been treated as ‘less than’ and, most likely, have been infantilised. Potentially to the point that he wouldn’t have won the noble prize. But he sure wasn’t stupid but he didn’t seem to communicate and socialise like a neuroconformist either, some historical accounts suggest – was he defective due to that? Of course not. However, according to psychiatrist Glen Elliott as cited in a New Scientist article from 2003 Einstein couldn’t possibly be autistic because he was known for having a good sense of humour… I rest my case when it comes to neuroconformists’ stupidity). 

So, let’s not blame autistic people for being the victims of neuroconformist social structures and let’s not call autistic people defective due to reacting to this abuse. Let’s work on an empowerment model where they re-learn to feel safe in their bodies and safe in showing up in this world while understanding that it’s a tall order because we live in a discriminatory, ableist world. 

(Goodness, how my former teachers' red pens would be running out of ink at this point if they were to correct this blot post with all my interjected sentences and “long-winded” ways of making my point. My autistic clients apologise all the time for “rambling”, “going on a tangent”, “adding irrelevant stuff”, “overexplaining” and “waffling.” Never have my experience of them been that. To me, autistic people paint this beautiful and detailed picture that helps me greatly in understanding their minds and seeing the world through their eyes. I absolutely love it! We’re also told that we “over-explain” as a trauma response and because we’re so used to being misunderstood and hating that. Maybe that’s true. But could it also be that we’ve first been criticised as “over-explainers” and then feeling the need to justify it with some sort of trauma-based story, because we’ve been brainwashed to think that giving lots of rich and interesting details is a bad thing? What if we explain just the right amount but neuroconformist people just struggle to keep up or struggle to pay attention for any length of time if the focus isn’t on them or if things get too deep and meaningful?)

I hope this post doesn't inspire a discussion as to whether I'm right or wrong. I'm not seeking being right. I'm seeking to share my experience and my experience is valid for me, just like yours is for you. 

If a friend was to ask me now "what does it mean to be autistic?" - I still don't know how to explain that in a succinct way. Not only because if you've met one autistic person, you've met one autistic person. But even if I only focus on myself, how am I supposed to explain all of me to someone else? To realise the absurdity of this, try asking a neuroconformist what makes them so neuroconformist? Or ask a human, what makes that person human? How is a cat supposed to explain to you what it means to be a cat and how it differs from being a human?  It only knows about being a cat, from a cat's perspective. And I only know about being autistic from my perspective.  Explaining it can be done but it wouldn't exactly an easy, straight-foward or quick answer. 

I hope, however, that I won't instantly start listing all the things I find hard even though they're super valid too. However, the things I find hard have more to do with a problematic world than a problematic me. Yes, I have meltdowns and shutdowns in a way, and more often, than a neuroconformist but that's because the world is too loud, bright, smelly and demanding and not because there's something wrong with me, even if you decide to compare me to a neuroconformist who simply has a less active brain (factually true by the way - I'll write about that some other day). I'm not saying I'm not disabled - I am, by the world I live in. 

But I've read online comments from lots of people who say that even if they lived in a neurodivergent-designed world, they'd still be disabled (following the medical model) because x, y,z. I couldn't possible list all the reasons people have felt that way, but I do often notice that it's because they presume a neurodivergent world might be less bright, loud and smelly but it's still build on a neuroconformist capitalist system, which is disabling, or they're talking about pains or mental health issues which are horrible things to live with but we also have to be a little bit careful what we label as a disability. Not all problems, struggles or issues are disabilities. Someone with schizophrenia might be considered mentally disordered (obviously, I object to this language but I'm just trying to make a point, so go with it...) but they're not considered disabled. I live with a chronic health condition but that condition doesn't give me the label disabled (yet).

I can feel I'm starting to defend myself before I've even been (potentially) attacked. This is one of the reasons I've been so hesitant to share my thoughts online because there's a culture of attacking people when we disagree instead of opting for non-judgemental curiosity or a kind exchange of ideas. Autistic people might be straight talkers, but we can be straight talkers ("blunt") while still being kind and considerate of the person receiving the feedback. I'm hyper-sensitive - and can spiral for days, weeks or even months - post-criticism, but that doesn't mean I shouldn't be corrected when wrong or challenged. But I think autism isn't an excuse to challenge others in an unkind manner and there's a difference between being blunt and being inconsiderate and/or rude. 

Some might say that this hyper-sensitivity is a deficit (often a part of autism - and, for clarity, I'm not talking about 'rejection sensitivity' as that's not what happens in my head. I'm not worried about being rejected, I'm worrying about getting things wrong, proving I am stupid, but more importantly, I'm scared of causing harm, so I take all feedback massively seriously!). I see it as beautiful and I wish more people - all people - were equally sensitive because it'd been a global change towards kindness rather than suppression (again, for clarity, I'm not referring to sensitivities caused by low self-esteem, but about being an open-hearted, vulnerable person). 

There's a theory that if 'you' can get discriminated groups to fight among themselves, they'll be sufficiently distracted that those in power can get away with furthering their discrimination unnoticed and gain more power. I find that a powerful theory to ponder when we see LGBTQAI+ people fight among themselves about whether a person is queer in the right way, when Black people are being racist towards each other, when neurodivergent people fight about how to be a 'good' neurodivergent person or women tear each other down or claim that transgendered women aren't real women, or even when traumatised people attack themselves for not being traumatised enough to deserve time and space, or autistic people not be autistic enough to deserve help. 

That's the point of this blog post - about the deficit model - let's not fight ourselves or among ourselves. Let's fight the oppressors. And when that seems too big and overwhelming a cause, we can start by advocating for ourselves, being compassionate towards ourselves, rejecting oppressive models like the medical model of disability or the deficit model of autism and figure out ways to empower ourselves, potentially by flipping the script and tell a better story, so we can gain enough energy to help empower other suppressed people and groups. But we have to start by examining our own, internalised negative beliefs and/or hate. 

P.s. Further blog posts are planned around internalised ableism, low self-esteem and the inner critic, rejection sensitivity and much, much more. Keep your eyes peeled or sign up to my newsletter in the footer of this website - by the way, when you type in your email to my newsletter and hit subscribe, a box will pop up asking for your name, phone number and country - IGNORE this. I can't disable this feature but you're still signed up without giving me these unnecessary details. I'm working on a solution...

P.p.s. Did you find any spelling or grammar mistakes? If you did, know that you just allowed a space for me to unmask my dyslexia without fear of being corrected or ridiculed. Thank you for that :-)