Is it ‘autistic person’ or ‘person with autism’? How many autistic people are also LGBT+? Has ABA improved in recent years? Do parents of autistic people wish for a cure? Do autistic people feel empathy or not? With...
Is it ‘autistic person’ or ‘person with autism’?
How many autistic people are also LGBT+?
Has ABA improved in recent years?
Do parents of autistic people wish for a cure?
Do autistic people feel empathy or not?
With a subject as broad (and historically misunderstood) as autism, it’s important to build an accurate and meaningful consensus about important topics. With this in mind, I ran a survey which intended to establish current attitudes towards a variety of autism-related issues, gathering opinions and experiences from a wide range of people – autistic people, parents/caregivers of autistic relatives, professionals working with autistic clients, and those with no direct link to autism.
Over eleven-thousand people answered the survey – two thirds of whom were autistic themselves – and in this article I will present their perspectives.
Before we begin:
A few important things:
You are absolutely welcome to take screenshots of this article and share them wherever you see fit. (I had to disable copy/pasting on this site several years ago, when my other articles were being stolen literally every day.) With that said, there is this publicly visible Dropbox link which contains all the graphs on this page. Some graphs will be tough to read, but clicking on them reveals the full image. As with all my articles, every link you click will open in a new tab/window so it won’t interrupt your reading. It’s important that I acknowledge the following and thank them for their assistance with this survey: The 11,212 respondents who took time out of their day to contribute to the survey’s enormous data set. Saided DePriest, for translating the entire survey into Spanish so it could reach a wider range of people. A certain high-profile British academic in the field of autism, for sharing his feedback about the survey before its release – albeit in a personal capacity as opposed to granting official ethics approval, hence his anonymity here. (And before anyone asks, his initials were not SBC.) Christine Jenkins, an autistic academic and consultant, for providing useful feedback before the survey’s release. And the members of Autistic Not Weird’s Patreon supporters’ group on Facebook, for their feedback too. The group is such a safe place to make mistakes and I’m deeply grateful for the supportive community it is.
On a similar note, I should mention that I worked on this survey entirely in a personal capacity, as opposed to being given any research grants.
Meaning, of course, that I did this for free.
(Yes, it’s a bit ridiculous. And as an autistic academic said to me during her feedback, “I have never seen this level of effort done by one person.”)
I’m an autistic advocate by trade, and am only able to advocate professionally through the power of online support. So if anyone believes this survey is worth a cup of coffee, please do consider supporting me via Ko-Fi.
For those who want to support me in the long run (in exchange for specific rewards/thank-yous – not least bonus content, and membership of the awesome group mentioned above!) please consider supporting me via Patreon as this is largely how I make my living as an autistic advocate.
And once again, to those who are already supporting me – both financially and in terms of my wellbeing (or both at the same time, since my Patreon supporters are directly funding my therapy!) – thank you as always.
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Looking for something specific?
Here are the links to each specific section, for those visiting this page looking for one particular topic.
Life experiences of autistic people | Life experiences of parents/caregivers
Accessibility | Diagnostic pathways (and therapy)
The divide in the autism community | Intersectionality
Traits, co-occurring conditions and stressors
Attitudes towards autism | Vaccines | Language choices
Experiences of professionals | ABA | The cure question | Empathy
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About this survey
This survey is an updated version of the one I ran in 2018, and since autism understanding is so rapidly evolving I felt it worth repeating the survey with more refined questions.
And, as with last time, I want to clarify with this survey is and what it isn’t.
This article IS NOT intended to be a Gospel-truth representation of everyone associated with autism. 11,212 respondents may be enormous, and it covers an extreme range of people (in terms of geography, personal/professional backgrounds, connection to autism), but even then, it’s impossible for an online survey to totally cover a population as vast as the worldwide autism community.
This article IS intended to be an honest representation of the respondents’ attitudes to (and experiences of) autism.
This article IS NOT intended to be an academic paper and certainly not a PhD dissertation, although I’m reliably told that the data I collected could potentially lead to a paper if I were to take it further.
This article IS intended to be a straightforward analysis and interpretation of the data I have been given: as readably, clear, simple and accurate as I can make it.
And finally, this article IS NOT intended to be flawless and unquestionable. There are a few limitations that I’m already aware of, and probably others that I am not. For example, there was no practical way of enabling parents to fill out the parent/caregiver section multiple times for multiple children. There were smaller issues too, like option omissions (e.g. forgetting to list ‘echolalia’ as a trait option). There’s also technically no way to prevent fraudulent answers – and there isn’t in most surveys – but honestly, I believe the sheer number of respondents means that if there are any fraudulent answers, they’ve made a negligible difference to the data.
Now onto some questions that most people will skip past but they’re important for context: who answered the survey?
First, location. The geographical spread of respondents was largely what I expected, given the reach of the survey. And as low as the numbers are from non-Anglophonic countries, the prevalence of respondents from Spanish-speaking parts of the world was significantly boosted by the translated version.
No huge surprises regarding the ages of the respondents, including the data in the legend here which details what percentage of each group were autistic.
(Of course, I don’t think it’s reasonable to conclude anything about increased diagnostic rates among the young here. The enormous percentage of autistic children and teenagers is likely due to their parents or teachers asking them to be involved, while non-autistic young people wouldn’t have had the same encouragement).
As with the 2018 version, men are underrepresented in this survey – even outnumbered by the non-binary respondents. With that said, there’s been some level of research indicating that men are less likely to take part in studies (according to a study!). Further reading here.
The men and non-binary respondents in this data were overwhelmingly more likely to be autistic, leaving the non-autistic respondents to be just as disproportionately female.
The purpose of this question was to mitigate accusations of bias: after all, the more widespread your pool of respondents, the more reliable your data is. Data from one source is generally poor. (For example, after each of the 2020 presidential debates, pro-Republican news outlets were very quick to declare that “97% of Americans believe Trump won the debate!” since that was how their specific audience voted in the polls they ran.)
This survey does not appear to have this problem: I can say unambiguously that the majority of respondents did not find the survey through Autistic Not Weird. (In the 2018 survey it was 49.8% to 49.8% – rather hilariously, the 0.4% of people leaving the question blank ensured that both “yes” and “no” were each a minority!)
There is, of course, still some curiosity as to how I managed to get so many respondents to this survey. My methods included:
Plenty of shares on Autistic Not Weird’s many platforms (largely Facebook and Instagram); Posting in wider groups and hashtags beyond my own platforms, in places largely populated by autistic people and/or their relatives; Encouraging readers in both the above to share with their wider networks (largely friends and colleagues, occasionally their children too).
This time round, autistic people are the outright majority in this survey.
The percentages don’t count for much because the questions usually differentiate between autistic and non-autistic respondents, but I have to admit it was very satisfying to see autistic people share their perspectives in such large numbers. (What particularly struck me was that almost 20% of respondents were autistic parents/caregivers of autistic relatives.)
And if you’re interested, 519 people clicked “yes” to all three sections, which means nearly 5% of respondents were autistic parents of autistic children who work with autistic clients!
There were also 493 respondents who did not say “yes” to being autistic, or to being a parent/caregiver, or to working professionally with autistic people (this 493 includes those who said they were “not sure” whether they or their relative were autistic). These respondents are as close to representing the general population as this survey is able to, so I will use them as a ‘neutral’ group for comparison once in a while.
OK, let’s dive into the results.
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Life experiences of autistic people
First of all, a result that appears to correct a huge misconception.
Historically, autism awareness campaigns (not least charity fundraisers) have always made the underlying assumption that autistic people don’t like being autistic. It surprised even me that this was only true for 12% of this survey’s 7,491 autistic respondents.
The obvious counterargument from those with anti-autism sentiments – an argument that’s likely to be used for a number of results in this article – is that “this survey is only representative of ‘high-functioning’ autistic people and not those with learning difficulties”.
So to address this, I made the graph on the right. After isolating the autistic respondents who listed “academic learning difficulties” among their autistic traits… I found that the results are nearly-but-not-quite as pro-autism as the general autistic population.
I’d also like to thank one of my students who looked at these graphs and made a thought-provoking comment: that it would be interesting to see an age breakdown of this question to see whether adults felt better about their autism than children (or vice versa).
What I found upon analysing each age bracket was that:
Respondents aged in each decade (20-29, 30-39, etc) had similar results to the above charts, often to within a couple of percentage points of each other. Teenage respondents (13-19) had results that were so close to the adult categories that no meaningful distinction could be drawn between them. Child respondents (0-12) had a much more mixed view. Although the sample size was only 32 (a satisfactory size objectively speaking, but miniscule compared to other sections) results were split almost evenly between strongly agreeing and strongly disagreeing. 43.75% agreed to some extent that they liked being autistic, but this was compared to 31.25% who disagreed.
This is not the only time in the survey that autistic teenagers’ attitudes were similar to autistic adults’. And the dramatic shift between childhood and adolescence implies to me that the adage coined by autistic advocate Dena Gassner is true:
You don’t grow out of autism; you grow into it.
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Now to something that may be less surprising: nearly 90% of autistic respondents knew they were different from an early age. It was one of those rare charts I needed to adjust the y-axis for, indicating how strong the consensus is.
The application of these results depends on the reader and their circumstances, but one of my personal takeaways is that those who say
I don’t want to tell my child they’re autistic in case it makes them feel different
are 90% likely to be parenting a child who already feels different.
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And on a similar note…
Again, nearly 90% agreed that learning about their autism had been a positive event.
The same people I mentioned in the previous chart, who fear their relative may have a negative emotional reaction to the news that they’re autistic, may only have their fears realised less than 5% of the time.
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Of course, as much as autistic people like being autistic, this doesn’t suggest there are no difficulties attached to it. In fact, less than 6% of autistic respondents reported autism not making their life more difficult, and a majority said their neurology was a factor in their life’s difficulties.
But a much, much larger majority claimed that wider society’s attitude towards autism made their life difficult. Which is quite revealing.
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For the next question – the perennial issue of autistic isolation – I’ve compared this survey’s results to the 2018 version.
(You may notice I removed the blank answers from the data on this occasion: this is because 11% of non-autistic respondents left this question blank in 2018, perhaps thinking the question wasn’t intended for them. Since 11% skews the appearance enormously, I decided to only display non-blank answers for a more meaningful comparison.)
Although there’s little difference among the autistic respondents (besides a very small sway towards disagreement), the ‘neutral’ categories seem to have collectively become more decisive on the matter in the last four years.
One thing’s for sure though: the levels of isolation among the autistic community remain present, and need to be addressed.
Of course, these results should be seen in the context of the COVID pandemic. The data was collected at the tail-end of 2021, when much of the world was still reeling from lockdown (including the countries where lockdown had ended). This may be a factor in the ‘neutral’ category also agreeing more than disagreeing.
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And on that note…
I couldn’t help but smile at the irony I noticed in these results: that the ‘neutral’ category – representing the general population – should theoretically be perfectly balanced for this question. But on average, they felt they’d found it ‘easier than most people’ on average. Despite the difficulties of lockdown, the general population seems to have the general consensus that “most” others had it worse than they did.
Looking solely at the shape of the chart, it looks like the only difference between the two groups is the level of disagreement. But when you look closer, you notice that nearly twice as many autistic people strongly agreed than the ‘neutral’ group.
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Next up, education and work.
Given that the mainstream education system – like the wider world in general – has largely been designed with the non-autistic majority in mind, it comes as no surprise that the autistic respondents’ collective school experience is so negative here. (One would imagine that the “Asperger’s genius” stereotype would make school easy for a lot of autistic people, but only 1.64% strongly agreed with school being a positive experience for them – roughly one in sixty autistic people.)
Sadly, even the argument that school has become better for the current generation of autistic students does not appear to hold weight… as shown by the 0-19 age group answering with close-to-identical results.
Of course, as a follower pointed out to me, a part of it could be due to bullying from their peers rather than the system not accommodating them. Either way, as a teacher myself, this lack of difference between generations both surprised and saddened me. We have a long way to go.
(The limitation to this question is that it doesn’t specify what type of school the respondents went to. In another four years or so, no doubt I’ll make sure this is addressed by a new survey.)
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Beyond school, I found another surprising set of results: the close match between those who have struggled to find employment and those who have struggled to retain it.
It’s important to make a point here about reading statistics. Just because the charts look similar does not necessarily mean that most respondents chose the same option twice. There will inevitably be respondents who easily find jobs but struggle to retain them, and those who struggle to find employment but once they’re employed they stay for their whole careers.
In fact, I decided to analyse this data more specifically. Please forgive my lack of pretty chart work here, but I felt on this occasion the Excel document did the trick.
Turns out 4,584 respondents (61.19% of the total) struggled with finding and/or retaining employment.
2,674 respondents (30.70% of the total) struggled with both.
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So once we get jobs, do we get accommodated?
Generally speaking, no.
Although the situation appears to be noticeably better for autistic people who work with autistic students/clients. Perhaps their colleagues are more likely to understand autistic people’s needs, or feel more motivated to treat autistic people with compassion. (Anecdotally, this has been the case for me as an autistic teacher in an autism-specific school.)
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Now for a very clear and unambiguous result:
Masking is an enormous problem for autistic people in general (as implied above, where over 80% of autistic people feel the need to mask in front of non-autistic people!). However, the general wisdom of the autistic community seems to be validated here: that life is better once you find your kind. Over half of autistic respondents disagreed about masking in front of other autistic people, with barely over 20% feeling the need to mask in front of autistic neurokin.
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The stereotype says that autistic people are less likely to be religious. Atheists may claim it’s due to ‘more logical thinking’, while people of faith may claim it’s a ‘lack of imagination’. Both views are stereotyped and ableist, in my opinion.
One limitation here was that the question focuses specifically on religion, rather than a general belief in any deities. (There will likely have been respondents who believed in a god – or gods – but clicked ‘disagree’/‘strongly disagree’ because they didn’t belong to any established religious body.)
Besides this, there are a number of factors at work here, and whereas autism does appear to be one of them, it is not the only one.
The biggest factor appears to be geography, but there were noticeable differences among each category explored here. Being an under-30 autistic non-binary Australian doesn’t exactly guarantee that you’ll be non-religious, but it certainly seems to indicate the probability of it.
From my personal perspective as an autistic Christian (and an asexual man too), I am particularly saddened by the LGBT+ columns. To any other people of faith reading this, we need to do a lot more to ensure that the LGBT+ population are not alienated from the love of God. The arguments applied to why autistic people are less religious do not apply to those of differing sexualities, and the discrepancy is most likely explained by the way they are treated by religious folk. I speak to both groups as one of your own, when I say that we (the LGBT+ community) deserve better, and we (the religious community) need to do better with the whole compassion thing.
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And the last chart for this section:
Thanks to the suggestion of Christine Jenkins (mentioned in the acknowledgements), I included a question about ageing – a topic which Jenkins rightly points out that there is a distinct lack of research for.
I’ve distinguished the answers of the autistic respondents aged 50+ (brown) and all autistics combined (blue). Just as interesting as the immediately visible results (e.g. finances being the biggest worry) are the differences between the age groups: those over fifty appear less worried about accommodation and finances than their younger counterparts, but substantially more worried about losing their personal autonomy.
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This may be the end of the “autistic life experiences” section, but rest assured there is plenty more to come from those 7,491 respondents. The topics not covered here can be found later in this write-up, nestled into more specific categories (e.g. ABA or vaccines).
In the meantime, we move on to the parents and caregivers.
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Life experiences of parents/caregivers
As with the previous section, most questions involving parent/caregiver-specific answers are spread across the rest of this article. Very little of this survey was parent-exclusive, but here are the bits that were.
First off, some context:
As indicated by the bottom-left chart, the section may be for “parents/caregivers”, but more than 19 in every 20 were parents (of course, many of them will have ticked other boxes too).
One unfortunate limitation to this survey was that naturally there will be some respondents who (for example) ticked “my spouse” solely because their spouse was autistic, and others who did not because they were not literally their spouse’s caregiver. There aren’t many questions in this survey which could be flexibly interpreted, but this was as close as it got.
Another limitation, as specified earlier, was that parents could only fill out this section once, which may have proved tricky for parents with multiple autistic children with varying needs. But perhaps this problem isn’t as significant as I predicted, given that nearly two thirds of parents/caregivers only have one relative in mind when answering.
Oh, and one major irritant was the eight respondents (almost all of them professionals) who inaccurately ticked the box claiming to be parents/caregivers even though they weren’t.
Through my trawling through the results (yes, I was this intensive with it, and I do have autistic-level attention to detail), I was able to find these eight and exclude them from the parent/caregiver data set. Thankfully they were only found on Day Three of my analysis, so any errors already embedded in my analysis were easily weeded out.
Obviously, I left their other answers (the ones outside of the parent/caregiver section) entirely intact.
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Anyway, let’s move on to school experiences.
Mixed, but not as overwhelmingly negative as one might suspect. (Again, the limitation here is that it was difficult to tell which type of schools their children went to.)
Of course, it’s still quite damning that 46.62% of parents did not think their child’s school knew how to support them. It’s not quite as damning as the National Autistic Society’s own research from 2021 though, which indicates that
44% [of parents] feel their child’s special educational needs are not being met in general, [and] three quarters (74%) said their child’s school place did not fully meet their needs – this has almost doubled since 2017.
It’s interesting to compare these results with the opinions of autistic respondents aged 0-19, and see how well the parents and children’s opinions matched up. You probably noticed earlier how negative the young autistic respondents were towards their school experience. However, others may make the argument that “autistic students without the cognitive skills to complete a survey may be having their needs met better in school”.
As someone who has worked in two schools that provide for such students though… it may be more likely but I would not take it for granted.
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According to the stereotypes, often put in place by autism-negative charities in decades gone by, having an autistic child generally causes all sorts of hardships including unemployment and divorce. No doubt it occasionally is a factor in these things – and this survey did not ask questions about marital status – but it’s not as strong as some would have you believe.
Having an autistic family member had a negative impact to at least some extent for 38.94% of parent/caregiver respondents, but not for 43.61%.
Like several questions in this survey though, I wish I’d asked this question to parents of non-autistic children, to see what the ‘baseline’ was for the impact of parenting on employment opportunities.
Yes, like I said, the parent-exclusive section is short. Now we’re going into the specific topics – the first being:
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Accessibility
I asked the question “how accessible have you found __________” to all respondents, so I could compare the autistic people’s responses to the general population.
Side note: in this case, I did not use the ‘neutral’ category to represent the general population (since this would have excluded professionals unnecessarily – for the purposes of the accessibility question, professionals count as the general population too!). Instead I used ‘non-autistic respondents without autistic relatives’, to represent the population whose personal lives were not directly influenced by autism.
Anyway, this is what they said.
(Once again, I’ve removed the blank answers from this data in order to give a clearer picture. More than 10% of the non-autistic respondents left the questions blank, presumably thinking the accessibility section didn’t apply to them, and this made the wider percentages difficult to compare visually.)
Some observations.
School: almost double the percentage of autistic respondents strongly disagreed with school being accessible compared to the general population, and barely half the percentage strongly agreed.
Healthcare services: excepting the ‘neither’ category, all four columns indicate that healthcare services are easier to access if you’re non-autistic.
Public places: besides a six percentage point jump in ‘strongly disagree’, there was not as much difference between the two groups as some would predict.
Community groups: more than double the percentage of autistic respondents strongly disagreed with community groups being accessible compared to the general population, and only between a third and a half strongly agreed.
And interestingly, more of the general population disagreed than agreed in three out of four categories, with school being a very narrow exception.
It looks like accessibility is an issue for all of us – just autistic people disproportionately.
Next up: accessibility regarding autism diagnoses.
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Diagnostic pathways (and therapy)
You may have noticed at the start, but this survey recognises both diagnosed and non-diagnosed autistic people as autistic. (There’s a question later which specifically considers the question of self-identification. In the meantime though, I would argue that I was just as autistic while I was seeking a diagnosis as I was once I received it, so the experiences of non-diagnosed autistic people was absolutely worth collecting.)
For context, let’s analyse diagnosis levels among the autistic respondents.
Honestly, I have no way of knowing whether this is representative of the autistic population in general. But I felt it important to provide this chart to pre-empt an argument that I predict some people may use, because sadly I see it across the internet already from a small (but harmful) minority of people: the argument that “the autism and neurodiversity movements are just a load of undiagnosed pretenders hijacking autism advocacy”.
I have never seen any empirical evidence for that claim, which I’ve only seen used by people who are blatantly trying to gatekeep autism (and ironically, it’s rarely autistic people ourselves doing this). All I know is that self-identifying autistic people with no intention of getting a diagnosis made less than 1 in 6 autistic respondents here – the majority being diagnosed, and three quarters either having a diagnosis or seeking one.
But what interests me most is the 6.65% (almost exactly 1 in 15) who were unable to get a diagnosis. The sad truth is, accessibility of diagnosis is quite a privilege in many areas (hence why there are so many people self-identifying as autistic).
So I decided to dig further.
There was a distinct geographic split, even bearing in mind the low sample sizes from Africa, Asia and the Middle East. Not all of this will be due to lack of diagnostic opportunities; some of it will be down to post-diagnostic discrimination, or even safety reasons. (One high-profile example is the controversy with ‘Barnevernet’ – Norwegian social services – who are devastatingly more likely to remove a child from their parents in general, but especially if they have an autism diagnosis.)
As a British autistic person, it was at least encouraging to see that the UK and Ireland were a region where diagnosis was an option for the vast majority of autistic people.
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(Blanks were once again removed here, as respondents were encouraged to skip the question if the diagnostic pathway didn’t apply to them.)
I also decided to compare the diagnostic experiences of autistic respondents to parents/caregivers of autistic relatives. (For those who were both, they are included in both graphs because this question was asked of them twice- once in the section regarding their own experiences, and once in the section regarding their relatives.)
There’s not much of a noticeable difference between the two groups here, other than the parents/caregivers being considerably more likely to agree or disagree rather than choose ‘neither’. But leaving differences aside, both groups had a near-majority or outright majority believing that the diagnostic pathway was not accessible.
Obviously I dug deeper again, to see whether some groups found the pathway more accessible than others. The main areas I looked into were gender and disability.
It would appear that in a diagnosis context, it’s easier to be a man and hardest to be non-binary.
It’s also easier to get a diagnosis if you’re non-disabled, although apparently not by much.
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And what about beyond diagnosis?
The stories I’ve heard (and my own experience too) about receiving a diagnosis and then being ejected with no follow-up support do seem to represent the general experience, among both adult and child recipients of diagnoses.
(You may notice the 8 percentage point jump in parents/caregivers clicking “agree”. Note, however, that both disagreement columns went up by roughly 3 percentage points – in fact, the near-halving of the “neither” column has resulted in increases in all other columns to some extent.)
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OK, onto therapy.
Before going any further, we should be careful before attempting to compare the two charts – the main reason I split them was to avoid blending all the results together and making the overall picture less clear.
I strongly suspect that the differences are due to which age groups each intervention is aimed at. For example, CBT is generally given to adults (sometimes adolescents), whilst ABA and floortime are generally delivered to children (and were less prolific during autistic adults’ childhood years).
Going by the data, it appears that the pro-ABA argument of “most autistic people complaining against it haven’t actually been through it” is a technically accurate argument. There are, however, two counter-arguments: first that personal experience shouldn’t always be a prerequisite for a valid opinion (for example, you don’t have to be a murder victim in order to oppose murder), and second… well, read the ABA section later on to see what those 341 people had to say.
In the meantime… what conclusions can we draw? Well, a lot of the interesting feedback came from the “other (please specify)” option, filled in by 1,071 respondents (yes, this question took a while to process meaningfully).
Some general points:
Dozens of people (both autistic respondents and their relatives) didn’t know the specific title of their therapy, or just wrote “normal therapy”, “counselling” or “psychologist”. Inpatient treatment was not an option in the survey, but several referenced experiencing it. Several autistic respondents were trained ABA-style by their own parents. Several respondents had their own creative, family or faith-based outlets as a therapy substitute. (However, three had negative or even abusive experiences with interventions put in place by religious organisations.)Specific comments of interest included:
“Therapies are inaccessible for me.” “Starting as a child aged 9 I’ve been heavily medicated as my main treatment.” “Counselling through online gaming [for my child].” “Neurodiversity affirmative psychotherapy and coaching.” (Three wrote comments like this.) “Need to note that we DEEPLY regret subjecting our child to ABA.” (Eight people wrote comments like this, and another respondent commented to claim their ABA was “highly modified with no abusive elements”.)Ok, a tough one coming up next:
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The divide in the autism community
Autism advocacy is not a safe and harmless scene, I’m sorry to say. There are frequent arguments and fierce divisions – the most high-profile of which are usually between autistic adults and parents of autistic children.
The toxicity ranges from parents telling autistic adults they’re “not really autistic” because they don’t appear to struggle enough, to autistic adults claiming the parents don’t understand autism because they’re not autistic themselves. (I’ve also heard from autistic adults of autistic children being shunned by both sides.)
But… is it widespread across the whole community, or is it just the loudest voices?
I decided to investigate, and these were the results I found.