The Deficit Model - Part 1
Below is a recording of this blog post
Have you read my Disclaimer post? Because then the fact that this blog post comes with a disclaimer might make more sense:
I'm writing this based on my own internal musings and the hundreds of conversations I've had with late-realised, high-masking autistic people. I would LOVE to have the sort of time and energy I had during my studies to dig deep into all the research and spent hours critically assessing everything I've read, as well as my own thoughts to write a compelling, science-backed essay but that's not really the point of these blog posts. They're my musings and I take full responsibility for being wrong and I invite you to take what you need or what you find interesting as a philosophical pondering and leave the rest (for more details about this, please do read my Disclaimer post).
I freelance for an organisation called Thriving Autistic. And they collaborate with various other organisations, including The Adult Autism Practice (a very reasonably priced, private assessment practice - now including A(u)DHD assessments). Both these organisations are neurodiversity affirming (you can read more about that in my blog post or in this great article).
To get an official, medical diagnosis for autism you have to use the deficit model as outlined in the medical, mental health diagnoses bibles DSM (Diagnostic and Statistical Manual of Mental Disorders) or ICD (International Classification of Disease) (urgh, just even the names of these two manuals - yuk!). The Adult Autism Practice, however, uses a strength-based model to identify autism but for the assessment to be valid they have to align it with the DSM (aka, the deficit model). I won't go into all the ins and outs of this as a clinical psychologist working in this field would do much better (or you can read the amazing book that isn't remotely as dry as the title suggestions: The Adult Autism Assessment Handbook). This can shock some people after going through a positive and affirming process to then end up with a rapport that shows all their 'deficits'.
OK, I can feel my brain - in true autism style - wanting to outline all the diagnostic criteria for autism, talk about the different diagnostic tools used and write a summary of the neuro-affirmative assessment handbook to paint a super clear picture and though some of you might find that really fascinating, I suspect that 1) it'll make this blog post rather boring 2) I'll never finish the blog post because the research would be endless 3) that's not really what I want to focus on here (you know, just, full disclaimer!)
The deficit model focuses on what's wrong with you but problem number one - according to who? Perhaps the neuro-majority but two problems there 1) I'm not sure neurotypicals will be in the majority once we understand the full extend of neurodiversities (and for this reason, for the rest of my post I'll refer to neurotypicals as 'neurosimplex' and neurodivergence as 'neurocomplex' (here, think complex like NASA's Curiosity rover, not the way some men derogatorily refer to the female mind)) 2) just because a majority thinks or says something doesn't make it smart or correct.
Oh, another disclaimer: One of the prevailing stereotypes in society is based on the mix-up between intellectual disability and being autistic. You can absolutely have an intellectual disability and be autistic, just like majority of autistic people don't have an intellectual disability, especially late-realised, high-masking autistics who quite often have an above (often well above) average IQ. But the annoying comments of "you can't be autistic because you have a job/family/live independently" or "you don't look autistic" is usually based on this mix-up. Not helped by the DSM by the way.
If we look at the DSM's deficit model it mentions that autistic people have a deficit in intellectual functioning, such as academic learning. But I'd argue that the problem isn't with one's intellectual function but how academic studies are taught. Dr Devon Price writes much more eloquently about that in their book Unmasking and the problems of what a capitalist society deems intelligent and worthy in humans, sharing a story of a non-speaking person who was deemed stupid because they weren't verbally communicating and, therefore, wasn't put through school. Once this person was given the right support, the ended up with a PhD!
The DSM also focuses on an autistic person's inability to learn from experiences - meanwhile the autistic community is screaming out for research based on autistic lived experiences rather than research focussing on how to 'cure' us (or worse, eugenics).
Perhaps some of the more commonly known autistic deficits according to the DSM is an autistic person's struggles to socialise and communicate. But again, according to whose standards?
Just because a group of people do things differently than another doesn't make them faulty.
Many autistic people aren't fans of small-talk, or pointless conversation. And many of us socialise in a different way than neurosimplex people do. We might become silent, unable to form words, when feeling stressed but, personally, I'd put higher value on that rather than to speak when unnecessary or when saying things that won't help the matter (like calling people ugly names in an argument or talking about boring stuff, the way neurosimplex people do at length! (Disclaimer: I use a lot of tongue-in-cheek humour - much like this...).
Personally, I'd see neurosimplex people has having a deficit (again, tongue-in-cheek).
The DSM for neurosimplexity: Those born with a neurosimplex development have limited ability to communicate thoroughly. They use vague and confusing language as well as sub-text. They tend to lack the ability to be clear in their communication and don't speak at length to avoid misunderstandings. They use a concept called 'consice' to paint a limited picture of events that can cause unnecessary confusion or leave out important information. They struggle to use direct language and to say what they mean. They often use manipulating language and can find it challenging to stay truthful. Likewise, they utilise a form of passive-aggressive communication called 'sarcasm' to communicate something they're fearful of addressing and they might use 'tone of voice' to indicate that their words aren't accurate (much like you might see in the animal kingdom, like with birds) instead of making use of their highly developed cognitive system.
People with neurosimplex disorder can have very static body language and be under-animated. They struggle to tap into higher levels of joy, and due to their simplex manner of viewing the world miss out on many important details both at work and in life. Even their so-called 'big picture thinking' only involves their near-environment, and it can be hard for the neurosimplex person to see, understand or appreciate a broader big picture such as considering the interlinked nature between humans, all of history, philosophy, psychology, spirituality, cultural variation, systemic issues and socio-political influences when considering any issue regardless of size and scope.
The neurosimplex disorder hinders the sufferer from easily dig deep into an interesting subject and learn at length everything there is to know about this subject in a short timeframe. They can have a hard time - having written many books and conducted training - into achieving the natural state of focus for neurocomplex people, also known as 'flow state'.
Neurosimplex people don't necessarily have hobbies but if they do they're often engaged with at a superficial level. Likewise, they utilise a communication style called 'small talk' where meaningful exchanges are limited or avoided. Their brains seem better able to memorise unimportant facts rather than be able to critically assess complex matters as seen in the neurosimplex school system where intelligence is rated based on who can memorise useless facts and regurgitate them during exams or when playing Trivial Pursuit.
Due to the neurosimplex being a developmental disorder, that we so far haven't found a cure for, though scientists are working on how to stop the neuro pruning process in neurosimplex people during childhood to maintain a more and higher developed cognitive system, neurosimplex people can struggle with emotional empathy and can't really relate to other people on a deeper level. Likewise, they lack the ability to understand dangers with their dimmed anxiety response. They prefer simple answers to complex problems and struggle to see when new systems would be beneficial. A simple test of this is when walking into a work environment and questioning why certain systems are in place. A neurosimplex person is likely to answer "because we've always done it this way", showing their inability for critical thinking and assessment. Also known as 'under-thinking'.
This is entirely satire - I do have a neurosimplex friend and she's really nice.
As much as above is indeed satire, I also wanted to illustrate the point of how something can be seen as a deficit depending on who gets to be the judge, or rather, who has the power.
Currently, there's a bigger focus on how mental health problems have been wrongly dealt with for centuries than there is on autism, such as Dr Lucy Johnson's (et al) 'Power Threat Meaning Framework' and how there are no biomarkers to prove a mental health disorder, it's just theories based on problematic ideas about being human. Looking at the ongoing debate around mental health we can see the same problems as for how autism is being dealt with - that it's those in power who gets to determine what's right or wrong with someone else and the person dealing with suppression and discrimination have their voices ignored an disregarded.
When I look at the autism deficit model, I see a long list of neurosimplex projections.
What I mean by that is that autistic people have a certain way of communicating - we prefer clear instructions, detail-orientated information, transparency and kindness. We're called 'literal thinkers' as if we're the problem to presume that what's being said is what's being meant. So, if an autistic person points out to a neurosimplex person that they're not making sense or their instructions are too vague or that a system in place isn't actually efficient, the neurosimplex person seem to struggle to take responsibility for their simplistic way of communicating and instead makes it the autistic person who has a problem (aka, projects their insecurities onto the other person).
Likewise, the school system was created to make compliant factory workers... In the industrial revolution it became clear that it was best if those in power created a society were people could do mundane, repetitive work without complaining and without questioning authority and the school system was designed around this - to mould small, free-willed, free-thinking, creative and curious children into compliant, authority-fearing adults. This is why so many neurocomplex people struggle in this stupid system/set-up but to avoid taking responsibility for a problematic set-up, created by the neurosimplex, neurocomplex people are deemed the problem.
You're, by the way, allowed to disagree with everything I write. You're even allowed to think I'm the one now being discriminatory and to be honest with you, it's no help in the battle between 'them' versus 'us' to then create a counter-propaganda based on the same rhetoric. To be honest, I just think I'm being a bit funny in how I'm going about making my point. But to be transparent and direct, my point is this: Just be mindful of the messages you're given or told, whether it's about your or the world you inhabit. Critically assess the information available and look at the power structures at play. Could the set-up be wrong?
We have a thriving mental health epidemic, if not pandemic. Thriving rather than troubling because the pharmaceutical companies are earning billions, literally, off your poor mental health. Poor mental health and maintaining that is a HUGE industry. The self-help industry (including self-help books) are part of that. They rely on giving superficial fixes so that people will fail, blame themselves for not 'fixing' themselves after having invested loads of money in whatever book or guru they prescribe to and go and Invests more money, because the focus is on how they're not strong or good enough to change, rather than the method of change is faulty.
Liking - or dare I say, loving - yourself is not just a rebel act but frowned upon because then you run the risk of being assigned labels like egocentric, selfish or a narcissist. If we all liked or loved ourselves (which can happen without harming others the way narcissists do, who by the way, deep down hates themselves) we'd crash the capitalist system which is based on you never feeling good enough, productive enough, accomplished enough, successful enough, in possession of enough stuff or the best or coolest stuff. If you truly liked yourself you wouldn't care about status or money and the capitalist system wouldn't survive and the world's 1% would become poor, something the 1% is heavily invested in not happening (if this tickles your brain you might be interested in reading Empire of Normality, Sedated, Cracked or Lost Connections).
So, I'm not asking you to diagnose neurotypical people (yes, I know I changed the word back to the current societal default to show I'm stepping away from satire) but I am asking you, for you own mental health sake, to be critical of the information you're feeding your brain about yourself and any deficits you're told you have or your believe you have. In a similar vein, yet different, the amazing Dr Devon Price who wrote Unmasked, has also written a book called Lazy Doe Not Exist where they show that this is yet another label many of us have internalised as a truism but it's build on faulty definitions of laziness.
This post is called 'Part 1' because there's a 'Part 2' coming about the insidious impact of the deficit model on our internalised ableism and ability to thrive as autistic people.
P.s. I'm dyslexic. You'll definitely find spelling and grammar mistakes in everything I do. For years I felt self-conscious about it and it's prevented me from sharing so many of my thoughts - and books. Then I was writing a chapter on masking/unmasking for my upcoming autism book and it occurred to me that when I'm avoiding showing up in fear of making grammar or spelling mistakes, I'm masking my dyslexia. So, I hope you're able to read my musings without too much effort and thank you for being a generous reader. If you come across any mistakes, I invite you to smile because you've just shared a space with me and allowed my unmasked dyslexia to exist. Thank you.