Prepare yourselves. This article’s a big one. (But for those looking at the scrollbar and thinking “wow, this is long”, the majority of it is graphs. Nonetheless, I won’t blame anyone for skim-reading.)
Three years ago, back when Autistic Not Weird’s Facebook page “only” had 7,000 followers [all links open in new windows, by the way], I ran an autism survey. It was a laborious but rewarding task, and I was surprised it got as many as 477 responses.
But at time of writing (October 2018), the Facebook page is nearly 84,000 strong. When a follower suggested I do an updated survey, I couldn’t get the thought out of my head. At least, not until I’d switched my brain to nerd mode and powered my way through it.
Before I start, I’d like to thank my Patreon supporters for being the beta group for the survey, and helping me to optimise it before I released it to the public. Because wow, I was not expecting over 11,000 responses. And when something you make gets that much attention, and that many people make the effort to complete it, they deserve a good quality survey. (And even bigger thanks for helping me write for ANW as my job: analysing these results took me most of the summer, so I have no idea how I’d have done it if I were still restricted to evenings and weekends.)
What this survey is, and what it isn’t
Before we go any further, I’d like to clarify a few expectations.
This article IS NOT intended to be a Gospel-truth representation of everyone associated with autism. Whereas 11,521 is a rather big number and the respondents came from a vast variety of backgrounds, it’s impossible for an online survey to totally cover a population as vast as the worldwide autism community. The survey does have particular limitations, which I will cover individually as this article goes on.
This article IS intended to be a thought-provoking and honest representation of 11,521 people’s attitudes to (and experiences of) autism.
This article IS NOT intended to be a mathematical work of art. Yes, I graduated with a mathematics degree way back in 2007, and statistics was my strongest area. But for this survey I wasn’t interested in chi-squared distributions or how far my standard deviations were from my means, etc. I decided to keep it simple.
At the age of 21 I would have wanted a piece of mathematical perfection. Now at 33, having spent my adult years as a teacher and a special needs tutor, my aim was simply to create something accessible.
This article IS intended to be a straightforward analysis and interpretation of the data I have been given: put into readable graphs to make it as clear, simple and accurate as possible.
The process, and who took part
Thanks to the advent of Google Forms, I was able to construct and run a survey that could be completed by anyone with an internet connection. Rather than just sharing the survey on Autistic Not Weird’s Facebook page, I shared it in as many autism-related groups as I had access to, and plenty of my followers did the same. After all, I can’t claim to have a reliable survey base if it’s only my own followers who took part.
The collection process took just over two weeks, and was a pretty interesting journey. A high volume of responses led to a considerable amount of feedback. Some of it was positive…
Some of it was helpful and constructive (and often very specific, as can be expected from many of us in the autism community!)…
And some feedback was just, well…
But generally speaking, people’s reactions to the survey were largely positive. Now, before diving into the big questions, here are the charts showing the makeup of respondents.
There was a near-perfect 30:20:50 split between autistic, might-be-autistic and non-autistic respondents (with the vast majority of non-autistic respondents having at least one autistic relative).
I’m aware that some may feel that a 30% (potentially up to 50%) autism rate isn’t as high as they’d want in an autism-specific survey. A few points in response:
- There are more relatives of autistic people online than there are autistic people. The numbers alone favour non-autistic people. Nonetheless, the autistic 1-2% of the population represented 30-50% of the respondents in a publicly accessible survey, which is pretty good going.
- Regardless of percentages, 3,431 autistic people took part (possibly as many as 5,751). This serves as a fairly strong sample size.
- You’ll see as you read on that most charts differentiate between autistic and non-autistic respondents’ answers anyway. So the variety in responses adds to the strength of the results rather than removing from them.
This reflects the follower base of both Autistic Not Weird and most of the groups where this survey was shared. No big surprises here.
I was surprised at the gender comparison though. I had initially put the huge female percentage down to Autistic Not Weird’s female-majority follower base, but there is research to suggest that women are more likely to complete surveys than men.
As before, this is a fairly accurate reflection of the age groups which use Facebook.
I watched as the results came in, wondering whether ANW followers or non-followers would end up being the minority. (At one point there was a difference of two, and the final difference was only six.) Rather hilariously, thanks to those who skipped the question, both groups were technically in the minority! Of course, for the purposes of this article we can treat this as basically 50:50.
I felt this question was important in order to provide context. After all, a sitting president’s approval ratings can be whatever you want them to be, depending on which follower base you choose to share the survey with.
For reference, I’ve found Autistic Not Weird’s followers to be very friendly, balanced and non-judgemental towards others. Obviously I can’t speak for the makeup of other places this survey was shared in. But overall, I am happy with the varied respondent base I’ve been given to work with.
Ok, let’s start with some attitude questions!
The state of autism awareness
First off, a striking answer to an important question. You probably saw it as the featured picture for this article.
Yep, over 98% of all respondents – autistic or not, with or without autistic relatives – believed that public understanding of autism is too low.
This isn’t for lack of trying though:
Despite autism being a difficult topic to discuss, the overwhelming majority of people linked with autism are happy to do so. Notice the substantially higher “strongly agree” rate in the bottom-right corner, likely from people who have spent their relative’s whole lives fighting to get education provisions, services, and professionals who will take them seriously.
The last question in the awareness category shows an interesting set of responses. Very few people, proportionally speaking, disagree with the statement. But the variation in agreement is interesting to note. It is likely that the non-autistic respondents most likely had autistic children of their own, and the vast majority of autistic respondents were adults.
This begs a difficult question to ask ourselves as a community: how many of us are truly interested in across-the-board autism awareness, and how many are only interested in awareness of ourselves? If we came across an autistic person (child or adult) who had very little in common with our own situation, how many of us would still be enthusiastic about raising awareness of their difficulties?
If that question makes you think, stay tuned. There are even more thought-provoking questions ahead. In the meantime, the main take-away from this question is that the majority of respondents, autistic or not, do think that autism awareness tends to neglect autistic adults. (And personally, I don’t think this is because children get diagnosed more often. I imagine it’s largely the result of charity advertising campaigns, media coverage and internet memes which find autistic children to be cuter and more marketable.)
Support for autism
Admittedly, this next question had its limitations. In retrospect I really wish I’d included a question about what school (if any) the autistic person attended. As it is, there is no way to differentiate between respondents who attended mainstream education and those in specialist provision (and believe me, plenty of my students have experienced both and have strongly opposing opinions of each).
But for the record, here are the results.
I decided to look into responses from different age groups – autistic only, so I knew the person was answering about themselves. It would appear (again, while recognising the limitations of the question) that schooling is beginning to improve. But I won’t make any further comment because I don’t think the data warrants it.
I could write a whole article on the complexities of Applied Behavioural Analysis and what the debate is about. Short version: it’s an early intervention therapy used on largely American autistic children, based on discouraging and replacing autistic behaviours. Therapies range from anti-autistic “hide all the symptoms” methods (in line with ABA’s origins), to more autism-friendly play-based methods which encourage the child to express themselves, communicate their needs, develop coping strategies and keep themselves safe (essentially not following ABA’s founding principles at all, but calling themselves ABA so they’re covered under American health insurance).
The stereotype is that autistic people hate ABA, while parents and professionals love it. Kind of like attitudes to person-first language, but we’ll come to that later.
I really wasn’t expecting the result to be so anti-ABA, even among non-autistic relatives. Of the groups shown here, the only one appearing in favour of ABA are those without autism in their family (who I suspect were largely made up of teachers, doctors and other professionals linked to autism). Even non-autistic relatives of autistic people (largely parents) disagree by a slim majority. The autistic respondents answered as I’d predicted.
The limitation here (and the most likely counter-argument from ABA advocates) is that we can’t tell how many autistic respondents have experienced ABA personally. But I don’t think that’s a good reason to discredit their opinions. I’ve never snorted crack cocaine, but the attitude of “don’t knock it ‘til you try it” hardly applies there. If you can be well-informed about the consequences of smoking without buying a pack of cigarettes, you can be well-informed about the pros and cons of ABA without being a patient of it.
People often overlook what happens when autistic people leave education. I’ve been there – with multiple university degrees – and I’m afraid it’s not pretty. If you find an environment that recognises your strengths and allows you to play to them, an autistic person can excel in employment. But in my experience the job interview process has been designed, like the world in general, with the other 98-99% in mind.
I made sure to isolate non-autistic relatives’ answers too, wondering whether having autism in the family impacted relatives’ working lives too. It appears not to have an adverse effect (which, I’ll be honest, surprised me), although the high rate of “neither/not applicable” suggests that many respondents may be full-time parents/carers.
But still, a quarter of this group struggling with employment is pretty bad.
(It’s worth referencing the fact that 11.08% of non-autistic relatives skipped this question- more than most other questions in the survey. This question immediately followed the ABA one where I’d encouraged people to skip if necessary: perhaps that opened the floodgates and people realised they were “allowed” to skip questions after all. Interestingly, autistic people barely skipped the question at all. Perhaps they felt they had something important to say on the matter.)
Just two quick ones here. Do autistic people really excel with numbers and have amazing memories?
Well in the case of memory, it seems so! The answers regarding mathematics are too varied to draw a conclusion from, and also difficult to distinguish from the general population.
A few people commented that the first question didn’t distinguish between short-term and long-term memory. I was originally referring to long-term memory, and there is a big distinction between the two. For example, I can still remember registration plates of cars that cut in front of me when I was eleven, but I have to set an alarm on my phone to remind me to start making dinner.
Here are the answers to the statement: “I have religious faith”. The colour-codings (blue = agree, purple = disagree) are exactly the same here.
Back in the much smaller 2015 survey, the results indicated a much bigger link between place of birth and religious faith than a person’s neurology, so I decided to separate the data into even more groups this time.
(Again, there are natural limitations to the question: I knew people who believed in God but clicked “disagree” because they wouldn’t describe themselves as religious.)
I asked this question to investigate the stereotype that autistic people are more likely to be atheists. As an autistic Christian myself, I was particularly curious. (And for those curious about how a helplessly logical Aspie like me can live a lifestyle based on faith in the unseen, I wrote an article about autism and religion here.)
The data does appear to suggest that autistic people are more likely to be atheists. Meanwhile, women, older people and those outside of the west (excluding the USA) appear more likely to be religious.
For clarity, here is the above graph again, with the columns sorted into order of disagreement with this statement.
It did surprise me that the UK respondents were marginally more religious than the rest of Europe. I have always believed it to be the other way round, as Britain seems to be more culturally separate from religious traditions than mainland Europe.
And one final interesting point: I occasionally hear atheist friends saying “this person’s only religious because they were born in a religious country in a particular decade.” They seem surprised when I tell them that, by their own exact logic, they are only atheists because they’re a British autistic male under the age of thirty. (Admittedly I fit this exact description too, except I just turned 33.) It’s unpleasant to be told that your personal beliefs are society’s rather than your own, but it must logically apply to all people, not just those we disagree with.
This was by far the most complained-about question on the survey. I didn’t know this, but apparently conservative and liberal have different definitions depending on which country you live in. It also doesn’t help that some countries have parties specifically called “Conservatives” or “Liberals”.
Nonetheless, the difference in the “strongly agree” columns is quite distinct.
I also studied different age brackets to see if people really do tend to grow more conservative with age. I won’t waste space in this article with the charts, because surprisingly all age groups gave similar results after all.
And now, take a deep breath…
The autistic respondents disagreed so strongly with this statement that I had to change the Y-axis to 80% to accommodate their responses. Even non-autistic respondents almost had an overall majority not just disagreeing, but strongly so.
Given my experience within the autistic community, I wouldn’t put the strength of disagreement purely down to the lack of substantiated, peer-reviewed scientific evidence for vaccines causing autism, or even the fact that the instigator of the anti-vaccination movement was stripped of his medical licence for falsifying data, profiteering from his results, and – among other things – taking blood samples from children at his son’s birthday party without their parents’ consent. (His name was Andrew Wakefield. Look him up.) To disagree with something means simply believing it’s not true. To strongly disagree implies something deeper.
Experience with thousands of autistic people tells me that the strength of disagreement comes from hurt at the suggestion that we’re “diseased” or “broken” (including the autistic people who were never vaccinated), and the weariness of feeling hated by those who suggest that we’re lesser than we ‘should’ be.
Because I was curious, I split the data into geographical regions. My initial thoughts were that America would top of anti-vaccination table, since Wakefield’s influence is so strong there compared to other parts of the world. Apparently I was wrong.
I don’t feel qualified to make any further comment about this chart, but it certainly changed my perception.
The bad stuff
Right now this survey must seem like a barrel of laughs. (Yes, I can do sarcasm. Come to think of it, I should have included a question on that too.)
But the negatives do need discussing, so let’s dive into it.
I’m not a parent, but I’ve always believed that parenting an autistic child can often be as isolating as being autistic yourself. And whereas these results don’t quite put both groups as equal, it does show them as surprisingly similar.
(Leaving aside those similarities, the bottom-right chart paints a fairly depressing picture of society in general.)
Well, this is an eye-opener. The collective autistic opinion looks to be decisively anti-cure, and the relatives’ opinions are split nearly-but-not-quite equally all five ways (being slightly in favour).
This would imply that the debate about autism cures has no general consensus at all… except, of course, from actual autistic people.
It doesn’t take a genius to predict the counter-argument: that the non-autistic relatives may have children with severe disabilities, or those for whom a cure may be seen as more desirable.
This argument may promote the assumption that “high-functioning” autistic people don’t also have extreme difficulties (if you doubt this, look at the suicide rate among autistic people), but public perception does usually see the biggest problems as belonging to nonverbal autistic people with academic learning difficulties.
So, let’s look at their answers too.
Yep, the respondent base for this survey was very wide. But even nonverbal autistic respondents, and those with learning difficulties, still gave the same response. (In fact, nonverbal/selectively mute autistic people appear to be even more against a cure than the general autistic population.)
After this, the only counter-argument left is that even these autistic people’s opinions don’t reflect those who are too disabled to fill in this survey (or even understand the concept of surveys).
But to me, it seems illogical to say that if an autistic person can’t access this survey, their opinions on a cure will suddenly become the polar opposite of their autistic peers.
As I warned earlier, this article contains some challenging findings. This is one of them. Right now I’m picturing some parents of profoundly disabled autistic children reading this, and thinking for the very first time that their child – despite all their difficulties – might not want a cure after all. I can only imagine how much of a powerful realisation that is.
In contrast, the answers to this question show a remarkable similarity between autistic and non-autistic respondents’ answers.
(Interesting side note- just over 73% of autistic respondents didn’t want a cure. Only 47% of people disagreed with “autism has taken away from my life”. Mathematically, hundreds of autistic respondents (at least) didn’t fall into both categories, implying the existence of many autistic people who feel that autism has taken away from their lives, but would still not want a cure.)
And finally, these answers indicated that regardless of people’s attitude towards autism, almost three quarters of respondents were at peace with how it impacts them. I find the contrast between these answers and the previous ones quite curious, but it’s nice to end this difficult section on a more pleasant note.
For those wondering, the “strongly agree” figure for autistic respondents was 46%.
I consider the percentage figures in this next graph to be limited in their reliability: if I’d asked the question “which of these phrases do you NOT say?” then I doubt those answers plus these would equal 100% combined. These answers are, however, useful for comparing phrases against each other. (Which, to be fair, was my sole motive for including this question.)
Initially I was annoyed that I didn’t include “ASD Level 1/2/3” as an option, as many diagnosticians are using ASD Level 1 as a ‘replacement’ for Asperger Syndrome these days. But then I realised that the heart of this question is about people’s language choices, not which diagnoses are used in particular areas.
But looking at the graph, a few things stand out. First off, the massive difference between usage of “high-functioning” and “low-functioning”. As problematic as functioning labels are, people do seem to feel more comfortable using ones that don’t sound too insulting.
“High/mid/low support needs” being more common than “mild/moderate/severe autism” was a big surprise as well: I had previously assumed this to be a term used exclusively by autistic people, to indicate the impact of autism on a person in a less misleading way than high/low-functioning. Maybe the phrase really is catching on.
I was also surprised at how more people use identity-first language (e.g. “autistic person”) over person-first language (e.g. “person with autism”). This is a source of great debate in the autism community, so I investigated a little further:
This does seem to back up the experience of many of us in the autism community: that professionals (including me, once upon a time) are taught to use person-first language, but those on the spectrum themselves are more willing to claim the word “autistic” as their identity.
And speaking of which…
First off, sexuality. My own personal experience is that autistic people (of whom I’ve met thousands) seem more likely to be LGBT+ than the general population. Recent studies (e.g. this one and this one) have suggested similar. So I decided to ask the question too.
I was expecting the autistic proportion to be higher, but I did not expect 38%. (Note also that the autistic respondents were the least likely to skip this question. Make of that what you will.)
Like most communities, I have seen homophobia existing in the autism community too. Often – as homophobia sometimes is – with “good intentions” (e.g. religious reasons. Which hurts me to say, as a Christian whose church attends Pride festivals in solidarity with victims of discrimination).
But there’s one clear takeaway from the above question: LGBT+ people are massively over-represented in the autism community. So if we want to truly support autistic people, it includes not being homophobic.
The question about gender identity does also suggest that autistic people are more likely to be transgender than the general population, although not by as much as I predicted (given that the overwhelming majority of trans people I’ve ever met, even from outside autism circles, are autistic).
Perhaps, instead of autistic people being more likely to have alternative gender identities, the link is the other way around. After all, 75.9% of the non-binary respondents were autistic.
Not much to say about this one. It was intended to show how many non-autistic people considered themselves to have other types of neurodivergence, but I can’t see anything groundbreaking here.
And finally, in relation to the often-asked question “is autism a disability?”, these answers suggest it’s very much an individual thing. More autistic people clicked “yes” than “no”, but unlike most questions in the attitude survey, this is not a matter of opinion but of personal experience. The personal experience of almost 48% of autistic people has told them that their autism – or perhaps a comorbid condition outside of autism – is disabling to them.
Bear in mind that autism is not necessarily the disabling factor for these respondents, or even comorbid conditions. One person who contacted me was an autistic cancer patient, who was disabled by her cancer rather than her autism. (And the 9.39% of non-autistic disabled people obviously weren’t disabled by their autism either.)
Finally, this shows me how much we underestimate the prevalence of disability in wider society. Leaving autism aside for a moment, 9.39% of the general population is a massive number.
Again, we should see these answers in the context of the question’s limitations. For example, there is no data on how old a respondent’s child is. Some people struggled to identify the start of the diagnosis journey: whether it was their first appointment, the first phone call, the first time a teacher or relative suggested autism, etc. Others completing the survey had multiple children, which obviously made this question difficult.
My main curiosity when asking this question was whether age or gender had an impact on diagnosis times.
The above graph is from autistic respondents with no autistic relatives: as before, to ensure the person is answering on their own behalf.
It surprised me that older people were more likely to get a diagnosis in less than a year. Then again, perhaps the queues are much longer for children.
It does not surprise me that females generally take longer to diagnose than males. Non-binary respondents tended to wait the longest.
As expected, anxiety is the clear ‘winner’ here. The top four were the fairly predictable coalition of anxiety, sensory processing disorder, depression and ADD/ADHD.
I decided to dig a little further, and see if different genders experience these differently. The next graph looks at the male autistic (blue), female autistic (red) and non-binary autistic (purple) answers for each condition.
Wow. With the exceptions of dyslexia, epilepsy, global development delay and (very marginally) PDA, the pattern is the same for every single comorbid condition: female autistic respondents were more likely to have them, and non-binary respondents even more so.
(It’s worth including a comment left by a (female) Patreon supporter, who read this article last week via the “early read” reward and offered this insight: “I wonder if female and non-binary people generally only get an autism diagnosis if the have lots of other ‘problems’ – the actual autism can be masked well by females, but add in ADHD or GDD and it suddenly becomes much harder to ‘hide’.” It’s definitely food for thought.)
There were quite a lot listed under “other”, and I’ll list the ones that gained over twenty here. (Bear in mind the response numbers would have been much higher if they’d been options in the survey, because in every case the respondent went to the effort of writing in these answers. I have asthma too, and it didn’t even occur to me to write it in the “other” box.)
Hypermobility (133), Elhers-Danlos Syndrome (85), Dysgraphia (83), Tourette’s Syndrome (79), Oppositional Defiance Disorder (ODD) (74), Personality disorders (inc. borderline, avoidant) (67), Fibromyalgia (59), Eating disorders (inc. anorexia, bulimia) (55), Allergies/intolerances (39), Auditory processing disorder (36), Asthma (34), CFS and/or ME (30), Cerebral palsy (29), Migraines (29), Blindness/sight issues (25), Apraxia (all forms) (22), Diabetes (Type 1, Type 2 and unspecified) (20)
The final question was similar to the above, except with traits rather than diagnosed conditions.
And again, I assessed the gender difference. The results were more varied, but gave the same overall impression.
The “other” section was jam-packed with literally thousands of answers, and was by far the most time-consuming part of the analysis. For those wondering why almost all areas of the surveys were multiple-choice rather than typed, this was why.
Some of the more interesting examples included:
“Amazing, Beloved, Perfectly and wonderfully made! Protected”
“Cats follow me everywhere.”
“Contagious zest for life and pajamas.”
“Difficulty coping with professional people feeling threatened and not listened to.”
“I wanted to use this area to say that a lot of the more negative aspects I’ve checked, such as bullying, employment/school difficulties, and the like, are not truly resultant from having Autism, so much as it is a result of other’s opinion and misinformation around being Autistic. It’s certainly not the fault of my brain being developed differently that caused me to be bullied, but the fault of those who don’t understand or those who don’t care.”
“Beingh harrassed by trans activists who won’t accept I do not sdhare their utterly unsubstantiated belief in gender fairies so use offensive terms like ‘cis’ about me and fail to ask my SEX”
“Piffle and rocking back and forth”
“Possibly the most overeducated bike mechanic in Canada”
“N/A – just wanted to say thank you, Chris 🙂 I’ve followed Autistic Not Weird since the beginning. The day my daughter got her diagnosis, we went out as a family to celebrate. I appreciate every person and family’s different but we celebrate our diversity for sure it’s who we are. Love that you included “awesomeness too!”
“Professionals criticising my communication”
“Irreverently hilarious! Unbelievably loving to those he trusts, and who accept him.”
“A very profound sense of justice, a very enhanced sense of responsibility.”
“Brave, courageous, determined, focused, creative, difficulties developing and maintaining friendships”
“Count absolutely everything (pieces of pasta in a plate/number of stairs/number of people in a room etc. Count this first normally then backwards then in every possible combination.”
“Life-long Existential Angst”
After sorting through thousands of these, I found the most common answers relating to social difficulties, loneliness, shutdowns (as opposed to meltdowns), verbal stims, tics, aggression, and burnout. Just like in the previous question, these were ones I regret not putting among the main options.
What are the most ‘hated’ parts of autism?
I decided to dig further into the previous two questions. The question in my mind was “what conditions/traits were common among those who want a cure, or those who feel autism has taken away from their lives?”
Well, let’s take a look.
According to the survey, it seems that global development delay and epilepsy are the biggest drivers for people wanting a cure. GDD was the runaway ‘winner’, with 42.19% of people with the condition (or, more likely, having relatives with the condition) agreeing or strongly agreeing with wanting a cure.
PTSD scored surprisingly low. And very few people wanted to cure people with hyperlexia.
And, with huge apologies to my PDA friends, my friends’ kids who have PDA, and people I love in general with the condition, the survey indicates that Pathological Demand Avoidance was the strongest indicator for autism taking away from someone’s life. Ouch.
GDD came a close second, followed by the five that I predicted would be on top.
And now the same with the survey’s last question.
“Lack of empathy” was the most significant trait among those wanting a cure, followed by “little sense of danger” (leaving autism aside, it’s difficult to object to people wanting that particular trait cured).
Despite the earlier findings about nonverbal autistic people with learning difficulties strongly opposing a cure, these traits were third and fourth on the list.
Once again, “lack of empathy” tops the list. (I’m nowhere near done with the empathy question yet, by the way. There are some very revealing findings at the end of this article.) People with family struggles also disproportionately feel that autism has taken away from their lives, followed by self-harm and mental health issues.
So that’s all the questions in the survey covered. But there were three more investigations I was curious about.
What about “awesomeness”?
Honestly, there were three reasons I included “awesomeness” as a trait option. From a human perspective, it was to insert a little humour into the survey. From an advocacy perspective, it was to give people a chance to express positivity in a question where most options were negative. But from an investigative perspective, it was just to see what would happen if I did.
So, what kind of people see autism as awesome?
I wasn’t sure what to expect when comparing autistic to non-autistic, but the results were fairly similar. More than half of people with autism in their personal lives felt awesomeness came with it.
At first I was astounded that Americans and Canadians seem so positive about autism compared to the rest of the world. But then I realised that the word “awesome” is more liberally used in North America than anywhere else, so it makes sense.
The pro/anti-cure comparison speaks for itself. And here’s a surprisingly large gap between those who use identity-first and person-first language.
Only two bits to go now…
In general society, it’s widely believed that those who struggle at school academically are the ones who “struggle at school” in general. In the autism world, this is not necessarily the case. In my own professional experience, it is social difficulties that impact autistic young people’s struggles at school rather than academic difficulties.
I decided to see how many people ticked the traits “academic learning difficulties” and “difficulty coping with school/college”, and cross-reference the answers.
Look at the top-left graph.
Including the “both” row, 46.59% of respondents ticked learning difficulties as a trait. Little over a quarter of these (12.20%) had learning difficulties but didn’t struggle at school.
Including the “both” row, 62.53% of respondents ticked difficulties with school. Nearly half of these (28.14%) had no learning difficulties.
The other three graphs display differences between autistic people across the generations, and show strikingly similar results (except for the both/neither differences in the 50+ group). In all cases, roughly a third struggle/struggled at school despite having no learning difficulties.
And finally, the most upsetting result of all from this survey.
As the cliché goes, autistic people “don’t have empathy”. (Rather curiously, we are generally told this by people who can’t empathise with autistic people.)
It’s true that some autistic people lack empathy, but nowhere near enough for it to be a statistically validated stereotype. I deliberately included “intense empathy” and “lack of empathy” among the trait options, just to see which would win.
42.10% of all respondents ticked “intense empathy”.
25.83% of all respondents ticked “lack of empathy”.
The only surprise for me here was that the gap wasn’t larger. I used to avoid telling my teachers I was being bullied, because I knew the bullies would get told off and that would make them sad. Plenty of children I know are exactly the same: and the appearance of lacking empathy is usually the result of being unable to express it in the socially expected way.
Some respondents rightly pointed out that there’s a big difference between “cognitive empathy” and “affective empathy”. Autistic people struggle more often with cognitive empathy – the ability to read others’ emotions and respond to them. But most people understand empathy to be “affective” – having the ability to feel sympathy for someone you know to be suffering.
There’s a huge difference between not being able to tell when someone’s sad, and not feeling sympathy for someone who is sad. But due to the “lacking empathy” stereotype, very empathetic autistic people are often assumed not to care just because they can’t read faces.
For this survey, I deliberately just used the word “empathy”, so people could respond with their own understanding of the word. Here are the results.
Including the “both” row, 65.84% of autistic people (almost two thirds) felt intense empathy. Almost half of non-autistic relatives of autistic people put “neither”, and more of the other half believed their relatives to lack empathy more than feel it intensely.
The counter-argument here, just as with the cure debate, is that the autistic respondents may not be like those nonverbal autistic people with learning difficulties.
So again, let’s ask them.
As before, the answers from nonverbal respondents, and those with learning difficulties, reflect the wider autistic population in general, suggesting there is no link between verbal ability and empathetic ability (why would there be?), or between learning difficulties and empathy either.
And although this data set excludes those who don’t have the intellectual capacity to complete a survey, once again I believe that a jump from “this person can’t complete a survey” to “this person’s opinions must differ from most other nonverbal autistic people with learning difficulties” is not a logical one to make.
To end this article, what I find to be the most striking graph of all. The top shows answers from autistic people who are nonverbal and have learning difficulties. The bottom shows those with relatives who are nonverbal and have learning difficulties.
The very title of this article warned about some of the results being challenging. And this was the one result that truly affected me on an emotional level.
There may be a whole generation of nonverbal autistic people with learning difficulties who feel intense empathy for those around them, but are surrounded by people who genuinely believe their empathy doesn’t exist.
This result haunted my thoughts for a long time after I saw it. Perhaps it will for others reading this article too.
The TL;DR conclusions
(TL;DR being internet-speak for “too long; didn’t read”.)
- Over 98% of respondents felt that the public doesn’t understand enough about autism. This is despite the majority of them being happy to discuss it.
- Nearly three quarters of respondents felt that autism awareness focusses too much on children.
- Autistic respondents were largely against ABA. Those with and without autistic relatives were very marginally against and for, respectively.
- The majority of autistic people struggle with employment- no surprise there.
- Although the results regarding mathematics were unclear, the results did indicate autistic people having generally strong memories.
- Autistic people were more likely to disagree with “I have religious faith”.
- 84.03% of autistic people disagreed with “I am concerned about a link between vaccines and autism”, 74.38% strongly. 62.41% of non-autistic people disagreed, 47.40% strongly.
- Autistic people, or those with autistic relatives, were more likely to feel socially isolated.
- Whereas non-autistic respondents were evenly distributed on the cure debate, over half of autistic respondents strongly disagreed with wanting a cure. This includes nonverbal/selectively mute autistic people, and those with academic learning difficulties.
- The answers to “autism has taken away from my life rather than added to it” were similar between autistic and non-autistic respondents.
- Nearly three quarters of respondents were at peace with their or their relative’s autism.
- Identity-first language was overwhelmingly preferred by autistic respondents. Person-first language was overwhelmingly preferred by non-autistic respondents with no autistic relatives (likely to be professionals).
- LGBT+ people are disproportionately prevalent in the autism community.
- Autistic people seem marginally more likely to be transgender.
- Female and non-binary respondents generally took longer to get an autism diagnosis.
- The most commonly comorbid conditions were anxiety disorders, SPD, depression and ADD/ADHD. In most cases, non-binary respondents had these conditions the most, followed by female respondents.
- The most common traits were anxiety, sensory issues, enthusiasm for special interests, and meltdowns.
- GDD, epilepsy, lack of empathy and little sense of danger were the most common conditions/traits among those who wanted a cure.
- Nearly half of those who struggle/struggled in school have no academic learning difficulties.
- Autistic people are substantially more likely to feel empathy intensely than lack it. Non-autistic relatives, however, are less likely to believe their relatives feel intense empathy.
Well, if the feedback I got during the survey is anything to go by, I’d better brace myself now that the results are up! Whether these findings backed up your beliefs, challenged them, changed them, or none of the above, I hope it puts our whole community in a place of better understanding. 11,521 people took part in this survey and many of the results have surprised me too: our responsibility now is to recognise which of our attitudes or preconceptions need adapting in order to best serve the needs of autistic people and their families.
Wow, this was a long one. The longest and most arduous article I’ve ever undertaken. For those who aren’t already part of Autistic Not Weird’s Facebook community, you’re welcome to join. Or for those on YouTube, I have plenty of advice videos on my channel.
And finally, there’s absolutely no chance I’d be able to work this hard on a single article if it weren’t for my Patreon supporters who allow me to write for Autistic Not Weird as a literal job. Thank you all as always for giving me more than just evenings and weekends to write, advocate and deliver speaking engagements for the autism community, and if anyone reading this feels my work is worth supporting, feel free to take a look at the perks/rewards available in exchange.
Chris Bonnello / Captain Quirk-
Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel series may interest you!
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