Monique Botha is actually they/them 🤷🏻♀️
@DrMBotha
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ECR community psychologist focusing on dehumanization and objectification of minority groups in science. Tweets my own.
Joined February 2014
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✨NEW PAPER ALERT✨
“Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research - by me and Eiliidh Cage
Buckle up for a long(ish) thread about how autistic people disrupt research agendas! 1/
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There was a post on R/relationships & it's living rent free in my head. Some woman who loves plants was having a bad run of it with some of her most prized plants dying and couldn't figure out why, and it was slowly crushing her and it turns out her husband was poisoning them 😳
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My blood ran cold while reading it and I just can't get over how cold and calculating you'd need to be. I hope plant woman and her daughter get help, get out, and get to find or make somewhere a happy healthy, plant heavy home
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Not even shitting you, he was just killing them one by one over a matter of months "to knock her down a few pegs". Then it turned out he had been stealing and hiding her daughters possessions and then chastising her for not looking after things well.
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Whenever people talk about reasonable adjustments for autism or ADHD they're like "why can't they treat this like someone needs a ramp, because they're in a wheelchair". Don't mean to burst bubbles, but they also don't do it for wheelchair users. Have both, can confirm.
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April is just a month of autistic people explaining the difference between advocacy and eugenics.
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Last night I learned that baby stingrays look like little ravioli stuffed with frog people - enjoy!
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Sia: I made a heart warming film about autistic people
Autistic people: were autistic people involved.
Sia: No and it's because you're all terrible.
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I can't speak for all autistic people, but I can speak for enough when I say thank God.
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It's good seeing people talk about therapists, therapy, and ableism. Once when seeing a therapist they asked whether I'd given my spouse "permission to leave me" when I "became disabled". It was gross on many levels.
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I'll never get over how many research fields use autistic people as case studies for figuring out what constitues being human, by deciding early on, that we are automatically outside of those bounds.
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The thing with the panorama and ADHD diagnosis that they're missing, is that people seek out what they need. That's why so many who make an appointment end up with a diagnosis. This is only a scandal if people think that people are unable to to reliably know themselves.
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Non-disabled people: this euphemism makes me feel warm and fuzzy and nice
Disabled people: please for the love of God just utter the word disabled without flinching
Non-disabled people: BUT MY WARM AND FUZZIES
@DrAminaYonis
And I love how they say ‘people of determination’ instead of ‘disabled or handicapped’
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On another spicy note: I think we need to subgroup neurotypicals. That way you know what to expect when encountering someone with severe/ profound neurotypicalism. It's the only way and I will not be taking questions 🤷🏻♀️ please give me £3m for the project now.
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Here is a reminder for those who need it: having an identity around a minoritized characteristic can be a very positive thing. It helps to connect you to communities, drive social activism around the cause, and helps you challenge the internalization of stigma
Oh dear. I’ve upset a lot of people. I didn’t mean to. I’m not saying ADHD doesn’t exist, I’m saying it shouldn’t be an identity and it shouldn’t be self-diagnosed. We are more than our diagnoses - that’s what I’m trying to say.
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This might be a bit of a rampage, but... I think it is particularly cowardly for clinicians or research based psychologists to talk to newspapers about how adults seeking diagnosis of autism or ADHD are responsible for swamping services or taking away resources - a thread 1/
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CW: groping
The other day I was touched by a middle aged man in an elevator and 100% me being in a wheelchair, and his perception of disabled people played a part in it. He thought I would be silent. Ableism and victimisation go hand in hand.
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The legal implications of cases like this for autistic people cannot be overstated given it's about our ability to have agency, consent, or power over our own lives, even as adults. The implications are far reaching and disturbing.
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I swear I'm going to start labelling neurotypicals with "problem behaviour" every time they do something I don't like 👀 "problem behaviour: incessant small talk and not enough zazzy puns"
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9 times out of 10 when there's something about peak laziness and a product, it's people forgetting that disabled people exist. Then when you say this, there's angry fist shaking with refrains of "but I didn't mean for disabled people", but absolutely, they did.
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We are going to talk about this article so buckle up. I am featured and I am not particularly happy with how I am featured in it, given the depth and breadth of what I discussed in my interview. I am not happy at the lack of nuance in the portrayal of autistic people 1/
After decades of exclusion from decision-making in research, some autistic people are fiercely fighting for a seat at the table. But the issue is more complex than just a power struggle.
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Articles like this miss the most basic premise of any neurodivergence: masking. Children mask difficulties as best they can within punitive societies until the demands of life outstrip their capabilities & adults with the right tool adjust their environments to minimize demands
In this new piece at
@PsychTimes
,
@nassirghaemi
and I examine the rapid rise in the concept of adult ADHD and argue that it is a scientifically invalid psychiatric disorder.
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TW suicide
What people don't understand about masking is that it never stops. And maybe that's why autistic people die so often to suicide. We are taught to hide so much, and so well, that even in the midst of crisis we can always pull an "I'm fine" out of the bag.
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Everytime I see a take about how 30 years ago we didn't have X or Y or Z and it's about autism, ADHD, or any form of neurodivergence and or mental illness, I'm just absolutely dead at how steadfast it ignores the most shocking violence of institutionalization.
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When we talk about subjectivity and the double empathy problem, this study highlights the lack of critical thinking in autism research. Non-autistic people struggling to interpret our facial expressions does not mean they are inappropriate.
Autistic people sometimes have difficulty making appropriate facial expressions at the right times, according to an analysis of 39 studies.
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The "women just have trauma and not ADHD/autism" is a bunch of shit by people who are ignorant and sometimes purposefully so. The diagnostic criteria is expanding because previously we basically *only* focused on men. Plus, it can be BOTH, and for neurodivergent ppl it often is.
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You know what makes me angriest about the takes on the 'easy kind of autism' and 'quirky personality' shit - we have ample evidence of the increased risk of suicide, depression, victimisation, and marginalisation of autistic people
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I saw someone who sarcastically described non-autistic people as "off the spectrum" while making a point about terminology and honestly this is the content I needed in my life 😂
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The people I consistently see leaving autism research are autistic people. Again and again and again. They leave because the field isn't hospitable to our involvement. They leave to protect themselves. They leave a gap I struggle to live with. That's who is routinely leaving.
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I see it all the time "if you were a wheelchair user they wouldn't ask if you could just get up and use the stairs". Can confirm, has happened repeatedly. They do that. "No one would think you're pretending if you're in a wheelchair" tick. Has happened, routinely.
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The ableism disabled children face in school systems is exemplified by this horrendous thread that argues that really, all kids need the same thing and providing reasonable adjustments isn't necessary & lowers standards. It gives off "try hard enough and you can be normal" vibes
Do teachers need to make adjustments to their lessons to meet the multiple different needs of children in their classroom? I say no! 🧵
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Not wanting someone to make a horribly ableist film about the community you belong to is not bullying. Autistic people were told we had to wait for the movie to comment, then people got to watch it and we still aren't allowed to comment.
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This is such a a frustrating and invalidating dichotomy. Neurodivergent people aren't easily spilt into genius and disabled. Neurodivergent people can thrive and do thrive with varying levels of accomodations. Our rights shouldn't hinge on "brilliance"
If people are "neurodiverse," it doesn't mean they have a "disorder."
Some of the most brilliant scientists, entrepreneurs, artists, etc. are neurodiverse. They function quite well in society. Their "differences" make them great!
Yet, there are people who have "disorders" due
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I always bang on about the dehumanization of disabled people and I will never stop. Disabled people including children are frequently places outside of community and moral boundaries.
Exclusive: Parents offered class photo version with no 'complex needs' pupils - BBC News
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They thought she was "faking" being unconscious so just left her there. Naturally, she died. And the take away is no longer admitting people with a personality disorder to the service. Inhumanity knows no bounds.
"Following Edwige's death...we no longer admit women with a personality disorder to our service"
That's their take away from this - don't provide care to women with a pd label
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This is (ironically) a fantastic example of how self-awareness and advocacy with diagnosis is positive. If these are the only adjustments that are required for keeping someone in employment then what is the issue? I think this is fantastic.
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It's probably a controversial take but I don't care much for internal language policing in neurodivergent communities, nor people who aren't something policing it for those who are. Two things can be true: 1) we need better language 2) this is what we have *right now*i
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It lulls ppl into a false sense of security where they believe that physical access and acceptance for "obviously" disabled people has actually been achieved. But it hasn't. Just like it hasn't for what we call "invisible" disability. And existing in that intersection is awkward.
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I'm actually profoundly worried about the implications of this research. They might have gotten approval from Caitlyn's family (they had to get the diaries for example), but Caitlyn herself couldn't consent to this. What about privacy?
NEW: Caitlyn, 16, charted her hopes and fears before dying at a top boarding school. Now
@Cambridge_Uni
researchers are studying the autistic teen’s diary in a new research survey looking for answers.
Plus 10 min bill
@duncancbaker
@AmbitiousAutism
👇👇👇
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Autistic people die early, are bullied throughout basically every life stage, have an increased risk of experiencing domestic violence, all types of assault, homelessness, are more likely to live in poverty, not have the same level of access to work, have poor mental health
The logic in the article is "both sides" logic, suggesting that both autistics and behaviour analysts experience similar discrimination. But that too is just unbelievably crass. One is a marginalised group, the other is a clinical profession. These are not the same.
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Genuinely sick of seeing the narrative that by providing reasonable adjustments to disabled people we are discriminating against non-disabled people. That is just not how any of this works, & it literally screams "I want to protect the status quo and don't believe ableism exists"
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Here me out: I wonder if autistic and non-autistic people who don't attenuate to repetitive noises have worse health outcomes from hospital than autistic and non-autistic people who do attenuate. All I'm saying is that the beeping may just increase stress levels A LOT.
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On autistic people are resilience:
You can't compare a 5km fun run to an ultra marathon.
Poor mental health outcomes for autistic people don't reflect "a lack of resilience", it reflects a completely different stress burden, and a natural reaction to it.
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When people say "we're all human" I think it's important to remember that some of us are treated as *more* or *less* human than others. Many groups are dehumanized and denied fully human status. So yes, we're all human, but no, we aren't all treated as such.
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It's just ableism that manifests in different ways because each comes with a different set of "breached" normative expectations. But either way, it's ableism, and regardless of how or why you are disabled, trust me, accessibility is a huge issue.
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This is a reminder that there is no scientific basis for noise desensitization for autistic people because the mechanisms of habituation don't habituate, and we are also more likely to have sensory disorders like hyperacusis so this real world bullshit is really unsound
I've just been told by my child's primary school that ear defenders are no longer allowed for autistic/adhd children because they are, "aiming to desensitize the children to noise so they can function in society." I'm sorry, but I'm calling BULLSHIT.
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Something I don't usually talk about is my honestly debilitating fear of failure. Perfectionism to me is the height of masking neurodivergence because it's been a way to gain acceptance in society. I've been on both sides - the utter failure, and the exception 1/
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@Theholisticpsyc
They aren't and neurodiversity proponents and scholars don't want people to see them as such. The whole point is that they are just distributed ways of being, due to diversity in humans. Not inherently superpowers, not inherently tragedies. The superpower narrative lacks nuance
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You know what would be an interesting piece of research? The relationship between trauma, perfectionism, and inertia for autistic people... for reasons lol*. All I'm saying is the drive to be perfect is also probably rooted in how much shit we're used to getting😒
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If people on twitter with large followings are saying don't get a diagnosis of autism until like breaking point or whatever.... Please don't listen. No one should be taken to breaking point. It should not take a break down for an autism diagnosis. You deserve better than that.
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I think other autistics out there can appreciate the moment words become an endangered species when you're burnt out and you never know whether they're going to show up or not 🤷🏻♀️ Sometimes they are a finite resource is all I'm saying
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Am I surprised to see a UK journalist using autistic as an insult to denote lack of empathy or care? No. But am I surprised that it's for the telegraph? Also no.
This is what I mean by how inaccurate stereotypes created in research disperse into media.
Lockdown was the brainchild of a bunch of men on the spectrum.
They lacked the emotional intelligence to feel or anticipate the appalling consequences of criminalising human contact.
They still have the gall to claim it was the right plan.
My column:
The Covid Inquiry gets
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Social homophily Eric. Studies show increase rapoort and ease of understanding between autistic people and I wouldn't be surprised given the overlap if it were the same with ADHD. Plus, it's kind of like being queer. You attract other queer friends, because it's like they get it.
When "All my friends have ADHD" does that not signal that it is a hysterically overused diagnosis? When all the 12 year old boys at a birthday party have been labeled as ADHD, does that not show we have a pandemic of labeling everyone with this?
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You can't actually "personal responsibility" your way out of the effects of chronic poverty, the "after" effects of a mass disabling event, or a lack of equitable accesses to health supporting infrastructure.
That if people took more responsibility for their own health, the NHS would be much more effective.
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The conflation between scientific and dehumanizing is once again, doing a lot of leg work here. Whenever autistic people are like "please don't dehumaize, objectify, or stigmatize me or us" there will always be a researcher ready to claim "but it's science".
A strong call for accurate language re
#autism
: "The push for neutral language robs the scientific community of the ability to describe, with accuracy, the day-to-day realities of life of people with autism, particularly those with profound autism." 👏👏
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What this article lacks iis any real examination of systemic and institutional power between groups of people who by definition do not have equal access to or use of power. It begins by pretending that autistic and non-autsitic people are on an even playing field 2/
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Cite autistic scholars. Cite autistic activists. Cite autistic advocates. Cite autsitic people. Cite autistic knowledge. CITE AUTISTIC SCHOLARS. CITE AUTISTIC ACTIVISTS. CITE AUTISTIC PEOPLE. CITE AUTISTIC KNOWLEDGE.
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I saw something on Facebook today about how someone must not be very "far along the spectrum" because they were drinking beer and oh boy do I have questions 😂
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Let me make it as clear as the light of day on a cloudless morning: I am autistic before I am a researcher. I said it (and it was convieniently left out) that I will not tone police my community, and I stand behind them 100% when they call out researchers. Its their right. 17/
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By the way - all those anti-ADHD, anti-autism, anti-mental illness articles that have been blowing up in the news media pretending that depression, developmental neurodivergence, and other invisibilized disabilities aren't real - this is why. This was always coming.
Sure, Jan. You guys are busy talking about cutting PIP payments, have treated them like they're a walk in to the park to get when the bar is already impossibly high and now want to by and large scrap them altogether after weeks of conflating it with sick notes.
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I have to wonder how much diagnostic overshadowing with autistic kills us. Once an autism diagnosis is given there is such a reluctance to name anything else because everything (physical and psychological it seems) becomes autism.
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Masking isn't just hiding autism, or gender, or sexuality, or behaviour, or any marginalised characteristic. It's hiding anything that makes the majority uncomfortable, including pain, desperation, and suffering. It becomes so much a part of us, that we don't know how to say it.
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NEW PAPER (as promised):
"Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production"
Welcome to what is probably a reasonably long thread 😂 1/
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Firstly, as far as disenfranchised groups go - you are looking at one. Undiagnosed adults or those seeking diagnosis do not have the social power to remove resources (even collectively) from others. That rests in the hands of our government, and the NHS. 2/
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My PIP (now disabled persons payment having moved to Scotland) was up for renew.
I recently found out that I would continue receiving the same amount with no need for review for 10 years 😭
When I opened the letter I sobbed with sheer relief.
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If non autistic people do it, it's a hobby, if autistic people do it, it's therapy.
Are you a parent of an autistic child? Please complete a very brief survey to help us design a study to evaluate if surf therapy improves autistic children’s mental health. Thank you
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I am not so institutionalised into the humdrum bullshit of academia that I will ever tell an autsitic person confronting ableism in autism research that they really should be nicer about their dehumanisation, objectification, or marginalisation by non-autistic people. 18/
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Just under a year ago I caught COVID-19 and it was brutal and terrifying. I ended up in hospital twice. I ended up with pleurisy. I tested positive again today. I am so sad.
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It questions responses to research by autistic ppl but never the content of research, never the language used in its dissemination, and never the structural violence that is at play when people use dehumanising language and rhetoric to downplay the personhood of our community 4/
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Worse so - that autistic people and researchers who have spent years dissecting our lives, our bodies, and our existence, are on an equal playing field. Lord help me, that is (pardon my language) crap. Autistic people are a marginalised minority and some are quick to forget it 3/
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Non-autistic people dictate the language used to describe autistic people, the direction of funding used to study autistic people, the publications which get published about autistic people, the way that autistic people are taught about in universities. Everything. 9/
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I support
@AnnMemmott
and I made it maddeningly clear that I support Ann. I have never been as heart broken as to any attempt to pit me against Ann, or any other autistic person. I point blank refuse to be that token, and I won't be now. This is MY community 19/
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You want to understand power & autism research? Despite the chatter, the majority of funding goes towards molecular biological autism research. The majority of publications in autism research fall within the realm. The majority of autism research is done by non-autistic people 8/
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When we talk about the pathologization of autism... I just read an abstract that says
"More severe attention to detail" 😂💀
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It then uplays the epistemic responsibility that autistic people have by pretending that anger in the face of dehumanisation is irrational, uncalled for, harmful for non-autistic people, and inappropriate, and that autsitic people hold untenable social power in this regard 6/
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Next I am painted as the Good Kind of Autistic. The Rational Autistic. Autistic Who Knows How to Control Themselves. Unlike my often close friends or colleagues who are painted as the Bad Kind of Autistic. The Mean Kind of autistic. I will not be pitted against my community 16/
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This is your reminder than when you say "they wouldn't do this to a wheelchair user" in relation to other disability - they do. You might think that wheelchair users have all the rights. I am both autistic and a wheelchair user, and the grass isn't greener one side or the other.
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It downplays the epistemic responsibility that academics and researchers have in not using research as a tool or form of oppression or marginalisation, which honestly, is what a lot of research *on* minority communities has done and continues to do 5/
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People are not obsessed with diagnosed, they are being failed and requesting support. The pathologization of those seeking support is both bizarre and uncalled for. Neurodivergent people aren't the problem, we need a radical overhaul of systems.
The NHS cannot meet rising autism and ADHD demand, the Nuffield Trust says.
Thea Stein from the think tank tells
@MishalHusain
a better focus on support for people with different traits or ways of processing information, may help with the societal 'obsession' with diagnosis.
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My spouse has agency and autonomy. He could leave me for my terrible habits: leaving towels on the floor, my propensity to fill any space with books, my unwillingness to concede defeat in games. He could leave because he woke up one morning and wanted to. No permission required.
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Mental health professionals need much better training about disability - experiences like this make people less likely to seek help in the future. Disabled people deserve equitable access to therapy without being exposed to more ableism in theraputic settings.
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& to the nonsense that maybe the traits of autism are why autistic people are so angry and confrontational about autism research, well that's something convienient to blame so that you nevver have to face up to the horrific violence autism research has perpetuated. Lucky right?
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My autoethnographic paper about being autistic & doing autism research is going to drop tomorrow in Frontiers and I am low key *terrified*. I am exceptionally proud of it, don't get me wrong, but I lay a lot bare in it, I'm brutally honest, I'm not sure everyone will like that 😂
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It's been an honour to have my work on dehumanization of autistic people by researchers recognised! I often feel like I'm screaming into the void. Until the foundations of autism science are actually robust, what we build on them will be meaningful
#NothingAboutUsWithoutUs
The Nothing About Us Without Us Award is given to autistic self-advocates whose work fights to make sure that our community’s voices are being heard. This year, we’re honored to give this award to Joyner Emerick, Monique Botha, and Naureen Hunani, RD.
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Here is your daily reminder that a lot of undiagnosed neurodivergence correlates with increased suicidality in adults who have often been chronically failed by a system, especially for those Katie refered to as "high functioning" enough to still be alive when requesting help.
@trentconsultant
Deleting this as it’s too sensitive a topic. Of course everyone with any form of neuro divergence should be referred. Even if the wait ends up being ten decades (only half a decade where I am). This isnt ableism, its sensible use of scarce resources. 😬🫣🏃♀️
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I don't understand how a key metric of ethics in autism research isn't "is this wasting money?". Hundreds of millions each year spent, and so little on things that really matter. Its not just wasteful, its unethical.
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@Theholisticpsyc
It also feeds a toxic narrative that you should experience struggle or strain because of the way the world and your traits interact or that to they are also a gift. The superhero narrative marginalizes people who are already most marginalized in society.
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People tend to start the process of seeking diagnosis when they reach crisis. Although a small study, our recent photovoice found that ALL participants reach a breaking point before seeking out diagnostic services. It was during moments of profound pain
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So I guess this marks my fall from grace as the measured and good kind of autistic. Genuinely Tragic 🤷
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It treats the interpersonal as the real base of power in autism research focusing on how many followers twitter accounts have and how many times people interact with tweets. Let me be clear - that is not where the power is. The interpersonal is not the systemic. 7/
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Also he doesn't need permission exclusively or specifically for my disability. Believe it or not, I have dug through my internalised ableism enough to recognise that I don't need to be like "be free and go on without me". If I didn't "give permission" for anything else, why this?
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@NeuroClastic
One autistic person I know:
Has PhD, does public speaking, holds down academic job, did TEDx talk.
Another:
Can't drive, forgets to shower, goes mute in social situations, had meltodowns everday for 5 yrs as teenager, struggles to clean.
They're both me. I am peaks & troughs
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cited hundreds of times, be read thousands of times, be assigned to course syllabi, and inform how hundreds of thousands of undergraduates who are members of society will go on to talk about and interact with autistic people globally."
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Various NHS trusts won't even refer adults for diagnoses, and are increasingly not even refering children who they do not consider "severe" enough. Its laughable to treat people seeking help as the problem, in a crumbling NHS system. But here is why it is also *dangerous* 3/
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We won't discuss the abusive language and concepts which are regularly and without restraint applied to autsitic people, but we will dissect their social media for how many followers they have and pretend that tweeting about the ableist underpinnings of research is bullying 11/
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