Results and Analysis of the Autistic Not Weird 2022 Autism Survey

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:
    1. The 11,212 respondents who took time out of their day to contribute to the survey’s enormous data set.
    2. Saided DePriest, for translating the entire survey into Spanish so it could reach a wider range of people.
    3. 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.)
    4. Christine Jenkins, an autistic academic and consultant, for providing useful feedback before the survey’s release.
    5. 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.

 

Looking for something specific?

Here are the links to each specific section, for those visiting this page looking for one particular topic.

 

About this survey

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

The TL;DR conclusions

 

So, let’s begin.

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.

 

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.

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.

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.

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.

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.

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.

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.)

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.

 

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.)

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.

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.

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.

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.

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.

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.

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:

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.

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.

(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.

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.)

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:

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.

Not going to lie – I smiled when I saw the top row of results. For all the arguments we see online, for all the parent advocates who belittle ‘high-functioning’ autistic people’s struggles, for all the autistic people we see being hostile towards parents, for all the people who have had hurtful experiences with others in the community… almost 90% of parents/caregivers value the input of autistic adults – and 60% of them strongly.

When I removed autistic parents from the data, a very similar picture was painted. Almost 85% of non-autistic parents valued the input of autistic adults.

 

To those in the autistic community who are afraid that we’re not being listened to by parents of autistic kids, please be reassured that the statistics indicate differently.

 

The general consensus is that people very much value autistic voices. But those who don’t – perhaps due to negative experiences – appear to be quite vocal about their concerns. This is indicated not just by the “strongly disagree” responses outnumbering the “disagree” responses by at least double, but also be the “other (please specify)” answers in the question about respondents’ biggest stressors, where members of both groups referenced treatment by the other as a major stress in their lives.

So who are the 160 people who disagreed with valuing the input of autistic adults, and how do their perspectives compare? Well, looking into it further, 43 of them were autistic themselves (26.88% of the total, which may sound surprising but remember that 45.36% of all parents/caregivers in the survey were autistic).

And, generally speaking, these 160 were:

  • Marginally more pro-cure (and substantially less strongly against cures)
  • Substantially against the validity of self-identification/self-diagnosis (more than half disagreed with self-identification, compared to 18% of people in general as you’ll see later).
  • Substantially more likely believe that autism is a negative addition to the human gene pool (30%, compared to only 5% of all respondents) – although exactly 80 of the 160 thought it to be a positive addition.
  • More likely to be pro-ABA (22% agreeing with its use compared to 6% of all respondents), although the majority still disagreed.

I won’t be presumptuous enough to suggest reasons for these trends. All I will say is that yes, there is very evidently a divide in the autism/autistic community… although the statistics indicate it’s less severe than we’re perhaps led to think.

 

Meanwhile, let’s consider the bottom charts – the question to autistic respondents about whether non-autistic parents have a valuable place in the discussion – where the answers hold much less of a consensus. Those who agreed marginally outnumbered those who disagreed, including when autistic parents were excluded from the sample, but the welcome looks lukewarm by comparison.

In my experience, autistic people would argue that disagreeing with this statement does not come from hatred, but from the general concept of “nothing about us without us”. Self-advocacy is becoming much more prolific in all areas of the disability community and it’s no longer acceptable for autistic voices to not be front and centre in the discussion (try running an autism conference without a single autistic speaker nowadays).

But for those curious about the perspective of those who strongly disagreed, they were:

  • Significantly more likely to have had bad experiences at school (82%, compared to 71% of all autistic respondents)
  • Significantly more likely to be in favour of self-identification (78% believing that a diagnosis is not necessary to identify as autistic, compared to 64% of all autistic respondents)
  • Similar opinions to other autistics in terms of autism’s positive impact on the gene pool, but stronger
  • Marginally less likely to have religious faith (72% disagreeing compared to 66% of all autistics)
  • Surprisingly, more likely to disagree that the public doesn’t understand autism (5% versus 1.5%, although 92% still agreed compared to 96%).

It should also be said that the autistic community is very conscious of the stranglehold non-autistic people have had over autism awareness for decades before the neurodiversity movement truly took off. The results here may be contextualised by the fact that the role of non-autistic parents has recently been demoted from ‘head of discussion’ to ‘contributor’.

Nonetheless, even without this context in mind, I don’t look at the bottom two graphs and see hatred.

Intersectionality

Intuitively it seems obvious that autistic people are more likely to be disabled, and anecdotally it often appears like autistic people are more likely to be LGBT+.

But this survey exists because intuition and anecdotal evidence just aren’t enough. So here, have some statistics.

A majority of autistic respondents identified as disabled, suggesting that a lot of autistic people may disagree with the well-intentioned mantra of “autism isn’t a disability- it’s a different ability”. (Of course, the survey didn’t specify ‘disabled by autism’, so several respondents may be disabled for reasons unrelated to autism – or co-occurring conditions which are saliently linked with autism.)

It’s also noticeable that a high proportion of autistic people – more than 1 in 6 autistic respondents – are trans. A statistic as significant as this, in my mind, is something that needs to be remembered when we talk about meeting the needs of the wider autistic population.

Besides that, an extra surprise was that the proportion of LGBT+ autistic people appears to significantly outnumber the proportion of heterosexual autistic people. (I cannot think of any reason to doubt the accuracy of my data collection here, despite how outlandish it sounds.) On that note, here’s a breakdown of the sexuality question.

The graph speaks for itself (although I do wonder whether excluding parents of autistic children from the right-hand graph eliminated most parents in general from the data pool – parents being understandably more likely to be heterosexual – thus overrepresenting the LGBT+ representation in the general population.)

 

But the really interesting details (as with plenty of other questions) came in the “other” section.

One of the most common criticisms of this survey was that respondents could only choose one sexuality option. As a man who’s asexual and absolutely nothing else, it surprised me how many people wrote that they were pansexual and asexual (just to give one of many examples). It was a learning curve for me as a member of the LGBT+ autistic community too, as I didn’t even realise sexuality could work that way.

Among the other section, the results included (among many others):

  • 230 people writing “queer” (including responses that elaborated on it)
  • 202 people referencing multiple sexualities (which did not include the word “queer”)
  • 126 demisexual (only attracted to those they have an emotional bond with)
  • 106 unsure, don’t know or questioning (including the response “How can you identify sexuality, if you have no ability to identify your gender?”)
  • 25 specifically saying their sexuality was undefined
  • 16 omnisexual (attracted to those of all gender identities and sexual orientations)
  • 15 gray-sexual (limited attraction but not quite ‘traditionally’ asexual)

Traits, co-occurring conditions and stressors

As with the 2018 survey, I asked respondents what additional conditions they or their autistic relatives had, as well as what general traits they had (drawing a distinction between the two, of course).

Oh, and by the way- you DEFINITELY want to click the picture to see the full-size images on these next charts. (For those who missed that part in the introduction, clicking on this article’s graphs does exactly that.)

Starting with conditions:

Both charts show the same data – the grey bars in each simply shows the data of the other, for easy comparison.

Besides the interesting comparisons here (e.g. the huge increase in PSTD diagnoses and the lessened PDA diagnoses in adulthood), there are some striking isolated statistics. For example,

  • Around 40% of autistic people also have ADHD
  • Over a third of autistic respondents had PTSD
  • The majority of autistic adults struggle with depression
  • And I think it’s fair to say that the majority of autistic people (including children) also struggle with anxiety, although this shouldn’t be news to anyone.

(As a side note, the question specified “regardless of diagnosis”, due to the difficulty of accessing diagnoses for a lot of autistic people and their families. So these figures reflect lived experiences rather than diagnostic rates.)

Answers under “other” with 50+ answers included the following (and yes, in retrospect I should have included them in the options):

  • C-PTSD (written by 92 autistic respondents and 3 relatives)
  • POTS including dysautonomia (86 autistics, 7 relatives)
  • Chronic fatigue including ME (85 autistics, 12 relatives)
  • Migraines (79 autistics, 9 relatives)
  • Arthritis/rheumatism (59 autistics, 2 relatives)
  • Autoimmune conditions including Hashimoto, Sjogren’s (53 autistics, 4 relatives)
  • Dissociation, e.g. DID, DPDR, OSDD (52 autistic, 2 relatives)
  • Sleep conditions, e.g. DSPS, Insomnia, Sleep Apnea, Narcolepsy (48 autistics, 17 relatives)
  • Asthma (48 autistics, 12 relatives)
  • Visual differences (29 autistics, 25 relatives)

As for traits:

(Two limitations to mention here: some respondents were unsure whether to interpret this as currently having these traits or having them historically, and the percentages for “geekiness” are from English-language respondents only due to a mistranslation in the Spanish survey.)

This graphic may be useful for confirming a lot of what we already know about autistic traits: namely that the vast majority of autistic people experience social difficulties, heightened anxiety, sensory differences, and enthusiasm for special interests.

The comparisons between the two groups are interesting, but consider this: how many of these differences are due to age differences (e.g. addiction), how many are due to differing experiences of autism (e.g. low awareness of danger), and how many are due to what autistic people recognise within themselves that others may not (e.g. autistic people struggling with face blindness without others knowing)?

 

Answers under “other” with 10+ answers included the following (there were much fewer traits mentioned, possibly due to this question having more exhaustive options):

  • Aphantasia (written by 23 autistic respondents and 2 relatives)
  • Memory difficulties (15 autistics and 1 relative)
  • Interoception (12 autistics and 4 relatives)
  • Echolalia (10 autistics and 5 relatives)
  • Strong sense of justice (8 autistics, 2 relatives)
  • Misophonia (7 autistics, 7 relatives)

And finally, stressors:

Results from “other” (undifferentiated) with 20+ responses included:

  • Dating, romance and sex (55 respondents)
  • Access to healthcare (41)
  • Finances (32)
  • Healthcare/health issues unrelated to access (29)
  • Accessing official support e.g. social care, government (28)
  • “Everything”/”Life in general” (22)

Attitudes towards autism

Now for some more general questions (and their very revealing answers).

As indicated by the bottom-right graph, the situation does not appear to have changed in our favour in the last four years. There is a case for arguing that the proportion of autistic respondents this time round (66.81% compared to 49.92% in 2018) made a difference in the strength of agreement, but the parents/caregivers barely seemed to feel any differently.

Predictably, the only group to have more than 5% disagreeing were those without any ‘official’ connection to autism.

(With that said, the ‘neutral’ category may be less representative of the general population in the questions about attitudes to autism. Even most ‘neutral’ respondents would likely have completed an autism survey due to some type of connection to autism. So bear that in mind for the other graphs in this section.)

But either way, the short version is that we are not close enough to the general public understanding autism.

I highlighted these two groups in particular to show the contrast between those with lived experience of autism and those most likely to either diagnose or make referrals to diagnosticians. And whereas almost 1 in 10 non-autistic professionals agreed with this statement, a landslide majority disagreed, even if not as strongly as the autistic population.

I also analysed the responses of the ‘neutral’ category, and found them to be very similar to the non-autistic professionals – just a couple of percentage points moved from “agree” to “neither”. This appears to imply that professionals and the general public were equally aligned (or misaligned) with the beliefs of the autistic community.

It would appear that both autistic respondents and parents/caregivers are detecting a small shift in whether autism awareness focuses too much on children, with similar percentages to the 2018 survey but agreeing less strongly than before.

I isolated the responses from autistic young people to see if there was an age-related difference in opinion. Interestingly, autistic teenagers had a very similar opinion to autistic respondents in general (predominantly adults).

Next, ‘self-diagnosis’ (which I personally refer to as ‘self-identification’, to avoid people confusing it with a literal diagnosis), which has become a hot topic in the autism community. The two discussion strands that crop up most are autistic people professing that self-identification is valid because of the difficulty (or safety) of getting medical diagnoses, and concerned parents questioning whether the autism acceptance movement is being “hijacked” by those without an official diagnosis.

Our survey said:

Both among diagnosed autistic respondents and non-autistic parents/caregivers, self-identification appears to be generally accepted.

64.7% of autistic respondents with a diagnosis agreed, along with 48.31% of non-autistic parents, compared to 18.19% and 30.53% respectively who disagreed. The agreement appears to be stronger in the autistic community, which I suspect may be due to diagnosed autistics empathising with the undiagnosed (we were all undiagnosed once).

The results of this give the same impression as the very first statement: “I like being autistic”. Contrary to the narrative we’d been fed for decades, autistic people and their families generally do not feel that autism has taken away from their lives (with a substantial minority saying otherwise).

Again, to pre-empt the obvious counterargument that “this doesn’t include those poor nonverbal people with learning difficulties”, I’ve included the (strikingly similar) statistics for that specific group.

Interestingly enough, the strongest disagreement with the statement came from autistic parents/caregivers. I suppose it’s more difficult to say that autism has taken away from your life when it’s so present in your family.

These days, there’s a fair bit of discussion about what autism actually is. And, according to these (undifferentiated) results, the tide is very much turning against it being considered a disorder, and towards being a neurotype.

(I’m second-guessing my choice to allow respondents to click multiple choices for this one. Some may have only clicked “both”, and others may have clicked all three for exactly the same reason. Nonetheless, this question remains very useful for comparing the terms against each other.)

OK, brace yourselves. A controversial topic coming up now.

Vaccines

According to the headlines, the COVID pandemic appeared to breed a new generation of “anti-vaxxers”: those who were sceptical about the effectiveness of vaccines versus their potential damage (a group which are often confused with a wider group of people who were not concerned about the vaccines’ effectiveness at all, but questioned the approach various governments took- ‘vaccine passports’ etc).

But pre-COVID, the anti-vaccination movement was around all the way back in the 1950s when people protested Jonas Salk’s polio vaccine and even back in the days of Edward Jenner in the 1800s, but it came to wider international prominence in the late 1990s. This was due to the long-debunked piece of falsified research that gastroenterologist Andrew Wakefield published and sought to profiteer from, which resulted in mass public panic about the MMR vaccine and its alleged links to autism, followed by Wakefield having his licence to practise medicine removed by the General Medical Council. (Both sources link to findings published in the British Medical Journal.)

Even though the research was fully and comprehensively debunked, and wider (more reliable) studies have shown no link between vaccines and autism after all, the rumours and scepticism about the topic remain to this day. One wonders whether opposition to the COVID vaccine would have been quite so strong without Wakefield’s historical damage to public understanding of immunology.

 

But when it comes specifically to autism, are the anti-vaccination voices as common as they seem, or are they just disproportionately heard?

Well, this is what the respondents said – and it was the only agree/disagree graph in this article where I had to push the top of the y-axis up to 90%.

No group of people in the above charts had as much as 4% of respondents agreeing with the statement. Almost 90% of the ‘neutral’ category disagreed, and over 75% strongly. The strongest opposition of course came from autistic respondents, having long been the direct victims of the misinformation which resulted in public fear of autism – and by extension, fear of autistic people existing.

As low as the rate of agreement was, I felt that it was important to see if there were common factors among those who agreed. I checked three factors: age, geography, and religious background.

It would appear that the younger generations are less likely to believe that vaccines cause autism, along with particular geographical regions (although these weren’t quite as strong a factor).

I was also curious (speaking as a Christian) about whether religious background played a factor, so I decided to measure the two sets of results against each other. Again, please forgive my lack of pretty chart work here.

A correlation was confirmed, but not quite as strongly as I predicted (and honestly, feared). Outside of the “strongly agree to both” cell, the results look fairly similar between those with religious faith and those who are neutral.

The strongest disagreement about vaccines causing autism came from atheists.

I have to admit, I’m tempted to make some kind of comment here about my fellow faithful needing to do more about the levels of scientific literacy in religious circles. But that’s a discussion for another time, and one which covers a wider scope than immunology alone.

Language choices

One of the fastest-evolving hot topics in the autism community is that of language choices. (If you look far back enough in my articles here, you’re likely to find terminology that was perfectly acceptable in 2015 but is frowned upon today.) Because that’s the thing with movements: often standards change too fast for the wider population to keep up with. So here’s my 2022 contribution to helping us all keep in sync with the autism acceptance movement.

(The answers from the Spanish translation have sadly needed to be discounted, since an error in the survey disabled the ability to select multiple choices).

One of my biggest regrets about this survey was totally forgetting to involve two increasingly common terms in the question: ‘autistics’ and ‘autists’. These used to be uncommon but their usage is increasing in the autistic community.

 

Looking at the graph, the most striking part to me is the difference in usage of PFL (Person-First Language, i.e. “person with autism”) versus IFL (Identity-First Language, i.e. “autistic person”). Although the ground has shifted substantially since 2018, it appears to be autistic people spearheading the change. For reference, the below graph shows the aforementioned shifts:

Almost every piece of terminology has fallen further out of favour, among autistic and non-autistic respondents alike, except for the fairly straightforward “autistic person” (and arguably “autistics” and “autists” – damn, I wish I’d included those.)

The next three graphs specifically compare identity-first language (IFL) to person-first language (PFL), as this tends to be the biggest part of the terminology debate.

Before making any further comment, I should specify that although autistic people using PFL are noticeably in the minority these days, self-determination in self-advocacy is deeply important, and those preferring to refer to themselves as ‘people with autism’ have an unalienable right to do so.

I will, however, be acknowledging the preference of the clear majority of the autistic community while writing this.

 

Stereotypically, it’s supposed to be autistic people advocating for IFL whilst being ‘corrected’ by non-autistic people who want us to use PFL since it’s ‘more respectful’ to us (when the National Autistic Society changed wholly and uncompromisingly to using IFL, their social media team had to spend months and months responding to well-meaning non-autistic followers attempting to correct them, and I even wrote an article addressing such people here).

But this above graph shows this to be far less of an issue than in previous years. Non-autistic parents and professionals also seem to prefer IFL nowadays, although by a less substantial margin.

 

And how has this changed in the last four years? Well, like this.

Going solely by the results of these two surveys (although 11,000 respondents per survey is quite a substantial data pool), it appears that the use of PFL has nosedived since 2018. Interestingly, the biggest difference can be seen among non-autistic respondents, perhaps due to them playing catch-up with longer-established opinions among the autistic community.

 

Also, a thought occurred to me following the 2018 survey that I’ve been interested to research ever since. General discussion seems to indicate that ‘autistic person’ is often used as an acceptance of autistic identity, whereas ‘person with autism’ is often used as an indicator that the person is ‘more than’ their diagnosis.

So it got me wondering… is there a self-acceptance difference between those who use IFL and those who use PFL?

It would appear so. 70% of “autistic people” liked being autistic, compared to 37% of “people with autism”. Only 8% of “autistic people” didn’t like being autistic, compared to 29% of “people with autism”.

Although far from unanimous, there appears to be a growing argument that describing oneself using identity-first language could be considered a form of self-acceptance.

Experiences of professionals

The lead-in question was “Do you work with autistic people professionally?”, and I clarified in the additional wording that this was NOT meant to include merely having autistic colleagues (or, for example, working in a typical shop where some customers happen to be autistic by coincidence). I only had to exclude a handful of inaccurately filled results, all of which appeared to be genuine errors of understanding rather than visible falsehoods.

As before, some context charts to begin with.

(I should mention that two graphs from now, some respondents who answered with “other” were combined with professions near-identical to what they wrote, for simplicity reasons. This has resulted in a few arithmetical discrepancies later on. Just in case anyone reading this is adding up all the numbers.)

 

Those in the “other” column with 10+ respondents included:

  • 36 speech therapists/pathologists
  • 31 advocates/consultants
  • 29 support workers
  • 28 coaches
  • 22 non-teaching school staff (including 5 school psychologists)
  • 20 ABA practitioners, BCBAs or related behaviour workers
  • 16 psychologists (including educational/school psychologists)
  • 16 mentors/peer support workers
  • 14 researchers
  • 12 charity workers
  • 12 volunteers
  • 11 librarians

Along with literally hundreds more that didn’t combine into groups of 10+. There are a wide range of jobs out there.

The lead-in question allowed respondents to clarify whether they

  1. Did not generally work with autistic students/clients,
  2. Worked with a minority of autistic students/clients (e.g. mainstream teaching), or
  3. Worked with a majority of autistic students/clients (e.g. autism-specific speech therapy).

The question I thought most important to analyse the groups separately was this:

There are probably more in-depth reasons for the huge differences in enjoyment, but I’d love to think it’s simply because autistic people are so much more fun to work with.

To be serious though: in my experience, workplaces that successfully accommodate autistic people tend to be better at accommodating everyone else, including their employees. That, and anecdotally I have noticed that the rewarding moments are substantially more rewarding if the student/client has needed to overcome particular obstacles (e.g. anxious students buying from a shop or those who struggle with speech finding ways to self-advocate).

A consistent-looking display of a mixed bag. Teachers/educators seemed to be barely different in terms of training to professionals in general, with healthcare workers being noticeably less confident and therapists/psychiatrists being noticeably more. But even then, almost 35% of therapists/psychologists disagreed, so maybe the statistic of over 50% agreeing shouldn’t be celebrated prematurely.

ABA

Applied Behavioural Analysis (ABA) is widely advertised as the “gold standard treatment” for autism, and although developed in America it had taken steps worldwide, despite the controversies involved.

What controversies, exactly? Autistic advocates are quick to point out the increased PTSD rates among autistic children subjected to ABA, the fact that it all too often prioritises ‘reduction of autistic behaviours’ over meeting an autistic child’s wellbeing needs, and that it was developed by Ole Ivar Lovaas, a pioneer in “gay conversion therapy” (leading to widespread accusations that ABA can be compared to “autistic conversion therapy” – a difficult argument to refute given the number of practitioners who aim to extinguish ‘autistic behaviours’ with the aim of making autistic children ‘indistinguishable from their peers’).

Nonetheless, ABA continues to be a widely used intervention (and often the only intervention covered by American health insurers), except nowadays it faces a backlash from pro-autism advocates. But again – what does the wider community think underneath all the loud voices?

(Respondents were encouraged to ignore the question if they didn’t know what ABA was. The numbers who skipped the question ranged so much between subcategories that I have removed blank answers from all subcategories, for the sake of meaningful comparison.)

It appears that once again, the furore people hear from autistic people online regarding ABA really is representative of the wider autistic population. A majority of non-autistic professions disagrees with the practice of ABA too, 43% of whom disagreeing strongly. (Not just non-autistic people in general, and not just professionals in general, but specifically non-autistic professionals.)

Unsurprisingly, the 20 respondents who were ABA practitioners, BCBAs or behaviourists were more positive about it: 16 strongly agreeing, 3 agreeing and 1 being neutral.

 

Of course, the counterargument can be sensed a mile away: “but how many of these autistic people have experienced ABA themselves?

The answer: 341 of them. And this was what they thought.

Of course, ABA apologists are likely to point out that autistic people who haven’t experienced ABA are more likely to be critical than those who have actually had it. But that doesn’t look like a great defence when more autistic ABA patients clicked “strongly disagree” than all the other options combined. Honestly, if any other type of intervention had an outright majority of its patients strongly disagreeing with its practice, the intervention would likely be abolished.

(I’ve long believed that ABA is only seen as acceptable because the subjects are autistic children (and often disabled too), and therefore unethical interventions are easier to justify than they would be for non-autistic/non-disabled children.)

The chart on the right may look encouraging for those who support ABA, but (leaving aside that a 45% approval rating isn’t great, especially with a quarter of parents strongly disapproving) it’s sobering when placed next to the experiences of those who have personally undergone the treatment.

 

To me, this gives rise to two questions:

 

Once again, there’s a counterargument: “surely the autistic adults went through ‘old ABA’, before the profession improved the practice and came up with ‘new ABA’.

I thought of this too. So I split the autistic respondents into two age groups.

There is a difference between these age groups. But if I were an ABA practitioner, I’d hardly be jumping for joy that only a small outright majority of younger ABA recipients strongly disagreed with its use.

The cure question

Given the way autistic respondents have answered the other questions in this survey, you’ve probably worked out where this is going.

Yep, less than 10% of autistic respondents wanted a cure for their autism, and over 80% did not.

And, because if you’ve read this article all the way through you know how much I love pre-emptively addressing counter-arguments, here’s the bar graph in response to those thinking “yes, but this doesn’t represent those poor nonverbal people with learning difficulties”.

It really was surprisingly how near-identical these two graphs are. Experience told me to predict a similar result but even I didn’t expect it to match up quite this well.

Of course, even then there’s a counter-argument – that people who want to push back even further will argue this doesn’t include autistic people with extremely profound complex learning disabilities who don’t know what a survey is.

Leaving aside the inbuilt ableism in that assumption (and the fact that even if the survey did extract the opinions of those with complex disabilities, some people would still argue against any results they don’t want to acknowledge), I’ll say the same as I did in 2018- that:

To me, it seems illogical to say that just because an autistic person can’t access this survey, their opinions on a cure will suddenly become the polar opposite of their autistic peers.

Now, let’s take a look at what parents/caregivers think.

And this time, I split the results based on the parents’/caregivers’ neurology. The results were quite striking.

The autistic respondents’ collective attitude towards curing their relatives was an accurate reflection of their attitude towards curing themselves.

Non-autistic parents/caregivers, however, ‘only’ had a slim majority opposing cures for their children.

Whatever the explanation for the difference, it’s near-certain not to be anything to do with complex disabilities. Assuming that the children of autistic parents and non-autistic parents are just as likely to be profoundly disabled (intuitively some would assume it to be more likely for autistic parents, but let’s assume equality for argument’s sake), that would make these charts an accurate illustration of parental attitudes to a pool of children with an even spread of disability.

Short version: autistic parents are less likely to want cures for their autistic children, regardless of disability.

Perhaps it’s a matter of empathy: that autistic parents would see curing their children as akin to curing themselves. But I’ll cover empathy later on.

The attitude of professionals (autistic or otherwise) appears to mirror those of the general autistic population, but the attitudes behind the groups’ answers may be different. For example, some may strongly disagree because they see the awesomeness in their students/clients personalities, and others may disagree because it’s not up to them to have such hopes.

Then again, I feel that last option is more likely to be the case for the ABA/BCBA crew, whose attitudes towards cures was surprisingly neutral. (For context, two ABA practitioners and one BCBA were autistic themselves.)

Once again, I’m aware that these next charts focus on a minority of respondents (albeit a substantial minority). But I felt it important to look further into the life experiences of those who did agree to the concept of a cure.

These charts take the pro-cure autistic respondents (red bars), and measure their traits/conditions against all autistic respondents (green).

As always, you can click to see the full image.

(Rows ordered by percentage of all autistic respondents, to visually emphasise differences among pro-cure autistic respondents.)

The intention was the answer the question “which traits and conditions lead people to disproportionately want a cure?” although I don’t think many conclusions can be made here. Most of the traits and conditions are within reasonable proximity to each other. A few things I noticed though- autistic respondents who wanted a cure:

  • Had a higher percentage of learning disabilities (12.56%, compared to 6.71% of all autistic respondents)*
  • Had a lower rate of special interests (68.28% compared to 80.60%) and creativity (33.82% v 48.24%)
  • Were less likely to stim (58.62% compared to 71.34%)
  • Reported lower levels of intense empathy (54.75% compared to 70.55%), higher levels of lacking empathy (23.51% v 14.76%) and were likely to identify themselves as aggressive (27.38% v 18.40%)
  • Were much less likely to match autistic stereotypes, such as “geekiness” (53.78% v 65.03%), being academically gifted (46.70% v 60.82%), having attention to detail (57.97% v 69.75%) or problem-solving skills (40.26% v 52.76%).

*It’s important to clarify that autistic people with learning disabilities in general did not want a cure, even though percentage-wise they were more likely to. Although it could technically be said that ‘autistic people with learning disabilities were twice as likely to strongly agree with a cure’, we should be bound by responsible reporting (and basic statistical literacy) to not make statements like this without also clarifying that we are talking about small percentages.

After all, if a food/drink has a 0.00001% chance of giving you cancer, and then they change its recipe which leads to a 0.00005% chance, you could very accurately say “it’s five times more likely to give you cancer!!” even though it would be a misleading and scaremongering thing to say.

And what about pro-cure parents/caregivers?

(I should clarify that, as you’ve already seen, the cure question was asked three times in this survey: once for autistic people about themselves, once for parents/caregivers about their relatives, and once for professionals about their students/clients. So autistic parents were represented in the previous charts regarding their answer about themselves, and represented in these charts regarding their answers about their relatives.)

 

The most visible findings? Parents/caregivers who wanted a cure for their relatives:

  • Reported disproportionately fewer relatives with an anxiety disorder than all parents/caregivers reported them (48.91% compared to 55.65%)
  • Disproportionately had relatives with learning disabilities (24.97% compared to 17.76%)
  • Were more likely to check boxes indicating aggression (42.00% v 34.55%), non-speaking speech difficulties (29.58% v 22.61%) and lack of empathy (28.55% v 21.86%)
  • Were less likely to check boxes indicating autistic traits such as special interests (62.36% v 73.92%), literal thinking (47.38% v 59.00%), executive dysfunction (42.25% v 53.89%), attention to detail (28.30% v 40.65%) and intense empathy (20.87% v 39.55%)
  • Were less likely to check boxes indicating personality attributes such as “hyper-honesty” (28.43% v 40.56%), “geekiness” (20.61% v 32.78%), and “being extremely funny” (14.85% v 26.75%).

Although not quite a cure-related question, I felt these results belonged in this section.

Big surprise, the autistic respondents were by far the biggest group to agree with this statement, at a rate of over 80%. Parents/caregivers and the ‘neutral’ category also generally agreed (in the high 60s), although not quite as strongly.

The behaviourists generally claimed neutrality again (including the three autistic respondents, all of whom put ‘neither’).

I also analysed the statistics for non-autistic professionals in general, and found that they were very similar to the ‘neutral’ category – except with a 3% increase on “strongly agree” and 6% on “agree”. (Which, curiously enough, was a marginally more positive response than the non-autistic parents/caregivers.)

OK, final category now.

Empathy (cognitive and social)

Before we begin, we must draw a clear distinction between cognitive empathy and social empathy. To summarise it briefly:

Cognitive empathy means I can look at your face and instinctively know how you’re feeling.

Social empathy means I actually care about how you’re feeling.

 

Unfortunately, shortly after researchers established that autistic people’s struggles to read faces meant struggling with ‘cognitive empathy’, a misleading rumour went round that we lack ‘empathy’ in general.

To be clear though, just because an autistic person struggles to know how you feel, it doesn’t mean they don’t care about how you feel. The empathy myth does seem to be gradually dying out, but it’s one of the most harmful misconceptions about autism out there.

 

With that out of the way, I decided to ask these upcoming two questions to investigate whether the results fit with Dr Damian Milton’s “Double Empathy Problem” theory – the idea that autistic people and non-autistic people struggle equally to communicate with the opposing group, but it’s seen as an autism problem because we’re outnumbered.

The first graph does seem to indicate the struggles on the part of the autistic respondents.

No big surprise here. We’re autistic, and struggling with communication is supposed to be our kind of thing.

But what happens when the equivalent question is asked about communicating with autistic people?

It would appear that the general population, autistic or otherwise, does not claim to struggle to communicate with autistic people, including those with no ‘official’ link to autism.

(Quick note: although the group that appears to struggle most are non-autistic parents/caregivers, it’s worth bearing in mind that the question reads “I often find autistic people difficult to understand/communicate with”, not “I often find my autistic relative difficult to understand/communicate with”.)

 

So, let’s combine the two questions together.

This was one of those charts that defied my expectations. It appears to fly in the face of Dr Milton’s theory, to the extent that I reached out to him for comment.

This was his response (truncated for length):

Non-autistic people feeling that they communicate well with or understand autistic people does not always mean the same is felt by autistic people. This optimistic bias may be due to autistic people being framed as the ones with the communication and empathy issues. This was actually somewhat highlighted by Brett Heasman and Alex Gillespie’s work on perspective taking.

Another aspect is time spent with autistic people. A parent or professional who has spent much of their lives with autistic people in one way or another is less likely to feel an issue in general communication and understanding. If someone who had not worked with autistic people were to claim such an understanding, I very much doubt this would be felt by autistic people they communicated with. Were the respondents to the survey generally involved with autistic people (either professionally or through family)? If so, the results do not strike me as particularly surprising.

An interesting question remains – why the optimistic bias [on the part of non-autistic people] regarding ability to understand and communicate? Where does this come from?

In addition to Dr Milton’s interesting insight, the issue was summarised quite neatly by @autistictic in a Twitter thread about this article:

The survey result doesn‘t contradict the Double Empathy Problem at all. It actually demonstrates it beautifully.

And finally, the question of empathy in the wider sense.

The traits question earlier showed the statistics of what percentage of respondents experienced ‘intense empathy’ or ‘lack of empathy’ (either from themselves or their autistic relatives). These were:

Reported “intense empathy” Reported “lack of empathy”
Autistic respondents 70.55% 14.76%
Parents/caregivers 39.55% 21.86%

Notice how autistic respondents were nearly five times more likely to report experiencing intense empathy than a lack of empathy (and twice as likely to report it as parents/caregivers, who by comparison were ‘only’ nearly twice as likely to report intense empathy than a lack of it.)

 

But I’ll finish the graphs section of this article with an updated version of what I finished the 2018 with- perhaps the most hurtful realisation at all.

Four years on, things don’t appear to have changed. And tragically – because empathy is often difficult to see from those who struggle to communicate – those who live with non-speaking autistic people with learning disabilities may not truly realise just how empathetic they are.

 

Not right now, anyway.

The TL;DR conclusions

For those wondering, TL;DR is internet language for “Too Long; Didn’t Read”. So here is the shortened version of the results that stand out.

 

Autistic people’s life experiences:

  1. Over 60% of autistic respondents liked being autistic (despite the difficulties that often come with it). Teenagers and adults were substantially more likely to like being autistic than children were.
  2. Nearly 90% of autistic respondents knew they were different from an early age.
  3. Nearly 90% of autistic respondents felt that learning about their autism had a positive impact.
  4. Nearly 90% of autistic respondents claimed that other people’s attitudes towards autism made their lives difficult, compared to less than 60% claiming their autistic neurology did the same.
  5. Over 70% of autistic respondents feel socially isolated, very little change since the previous survey.
  6. Roughly 70% of autistic respondents had/have a negative experience of school, and there appears to be little to no difference with the younger generation.
  7. The struggle for autistic respondents to retain employment appears just as present as the struggle to find employment. Over 60% of autistic respondents struggled with either finding or retaining employment, and over 30% struggled with both.
  8. Autistic employees often do not have their needs met at work, but are marginally better accommodated in workplaces where they work with autistic students/clients.
  9. Over 80% of autistic respondents felt the need to mask in front of non-autistic people, but over 50% did not feel the need to mask in front of other autistics.
  10. Autistic respondents appear less likely to be religious, although other factors appear to be stronger indicators of religiosity (mainly geography and sexuality).
  11. The biggest worries about ageing among the 50+ age bracket included finances and the loss of personal autonomy.

 

Parents’/caregivers’ life experiences:

  1. Even though nearly half of parents were negative about their schools’ ability to support their children, parents still appear more likely to be positive about school than autistic respondents.
  2. Having an autistic family member had a negative impact on employment for 38.94% of parent/caregiver respondents, but did not have a negative impact for 43.61% of them. Of course, there was no data from parents of non-autistic children to compare this to.

 

Professionals’ experiences:

  1. Those who worked with a majority of autistic students/clients enjoyed their jobs more than those who worked with a minority of autistic students clients (65% against 47% strongly agreeing with “I enjoy my job”). The vast majority of both groups agreed with the statement in general.
  2. There was an almost perfectly even split between professionals who believed their training prepared them adequately to work with autistic clients and those who did not, with healthcare workers being marginally less confident about their training levels and therapists/psychiatrists being marginally more confident.

 

Accessibility:

  1. All measured areas of public life were less accessible to autistic people than the general population (although the general population did not appear to think public life was very accessible either).
  2. The UK, Ireland, Australia and New Zealand tend to be the places where diagnoses are most accessible, and (based on much smaller data) the Middle East, Asia and Africa were at the opposite end of the scale.
  3. Approximately half of autistic respondents and parents/caregivers believed the diagnostic pathway was not accessible.
  4. Diagnoses were more accessible to male autistics, and least accessible to non-binary autistics. They were also marginally more accessible to non-disabled autistics.
  5. The majority of autistic respondents and parents/caregivers believed they did not get the support they needed post-diagnosis.

 

The autism/autistic community:

  1. 90% of parents/caregivers value the input of autistic adults – and 60% of them strongly.
  2. Autistic adults who believe that non-autistic parents should have their perspectives valued in the autism discussion outnumber the autistic adults who don’t.

 

Intersectionality, co-occurring conditions and traits:

  1. The results suggest that a majority of autistic people identify as LGBT+.
  2. The results also suggest that autistic people are more than three times more likely to be transgender, and almost four times more likely to identify as disabled.
  3. Around 40% of autistic people also have ADHD.
  4. Over a third of autistic respondents have PTSD.
  5. The majority of autistic adults struggle with depression and a much larger majority struggle with anxiety.
  6. The vast majority of autistic people experience social difficulties, heightened anxiety, sensory differences, and enthusiasm for special interests.

 

Attitudes towards autism:

  1. 97% of autistic people and parents/caregivers felt that the general public doesn’t understand enough about autism.
  2. 85% of autistic respondents disagreed that autism is over-diagnosed, along with 72% of non-autistic professionals (whose beliefs, incidentally, were neatly aligned with the beliefs of those with no direct connection to autism at all).
  3. Nearly 90% of autistic respondents and over 60% of parents/caregivers believed that autism awareness focuses too much on children. Teenage autistics had similar opinions to the wider autistic population.
  4. Self-identification (or ‘self-diagnosis’) is accepted by almost two thirds of diagnosed autistic respondents and almost half of non-autistic parents/caregivers.
  5. Over 60% of autistic respondents disagree that autism has taken away from their lives, with similar results for non-speaking autistics with learning difficulties. This was mirrored by over half of non-autistic parents.
  6. Out of the four options, the most popular descriptor for autism was “neurotype”, followed by “disability” and “condition” almost equally, with “disorder” being the least favoured term.
  7. Over 80% of autistic respondents, nearly 70% of non-autistic parents/caregivers and two thirds of the ‘neutral’ group believed that autism is a positive addition to the gene pool.

 

Vaccines

  1. Over 90% of autistic respondents (and respondents who worked in healthcare) disagreed with concerns about whether vaccines cause autism, along with nearly 90% of the general population. The vast majority of these disagreed strongly.
  2. Concerns about vaccines in relation to autism appeared partly influenced by respondents’ age (older respondents being more concerned), to a lesser extent their geography, and to some extent their religious background (more religious respondents being marginally more likely to have concerns).

 

Cures

  1. Less than 10% of autistic respondents wanted a cure for their autism, and over 80% did not. The statistics were near-identical for non-speaking autistic respondents with academic learning difficulties.
  2. Autistic parents/caregivers were more likely to oppose a cure for their relatives than non-autistic parents/caregivers (79% opposed versus 52% opposed), and less likely to want a cure (9% in favour versus 26% in favour).
  3. Professionals were approximately as opposed as the general autistic population, as 75% of professionals were opposed to the idea of a cure for their autistic students/clients (although ABA practitioners and BCBAs were statistically neutral on the subject).
  4. Autistic people who wanted a cure were more likely to have learning disabilities (but even then, only 13% compared to 7%), reported fewer positive autistic traits (e.g. stimming, special interests, creativity, intense empathy), and were less likely to match perceived stereotypes (e.g. “geekiness”, academic flair, attention to detail and problem-solving skills).
  5. Parents/caregivers who wanted a cure for their relatives were more likely to have relatives with learning disabilities, and more likely to report aggression, lack of empathy, and non-speaking speech difficulties. They were less likely to report several ‘traditional’ autism traits (e.g. special interests, literal thinking), as well as personality traits such as geekiness and humour.

 

ABA

  1. Nearly 90% of autistic people (and almost 60% of non-autistic professionals) disagreed with the use of ABA on autistic children, (almost 80% and over 40% respectively disagreeing strongly).
  2. Over 70% of autistic ABA recipients disagreed with its use (62% strongly). However, a higher number of parents/caregivers of ABA recipients agreed than disagreed (45% versus 35%)
  3. Over 70% of autistic ABA recipients aged 20+ disagreed with its use (65% strongly), along with over 60% of ABA recipients aged 0-19 (52% strongly).
  4. ABA practitioners, BCBAs and behaviourist respondents were generally neutral about whether autism was a positive contribution to the gene pool, and also neutral about whether they would hope their clients would accept an autism cure.

 

Language choices:

  1. Over 90% of autistic people use identity-first language (“autistic person”) compared to less than 20% who use person-first language (“person with autism”).
  2. By narrower margins, non-autistic parents and professionals are now more likely to use identity-first language than person-first.
  3. Usage of all other language options included in this survey (with the exception of “support needs”) has fallen since 2018 in favour of identity-first language.
  4. Those who referred to themselves as “autistic people” tended to like being autistic more than those who referred to themselves as “people with autism” (70% compared to 37%). They also disliked being autistic less (8% disliking their autism compared to 29%).

 

Empathy:

  1. Three quarters of autistic respondents had difficulty understanding/communicating with non-autistic people.
  2. The majority of every subgroup analysed – autistic or otherwise – claimed to not find autistic people difficult to understand or communicate with. The section contained insight from Dr Damian Milton – author of the “double empathy theory” – adding context to why non-autistic respondents may have felt this way.
  3. Autistic respondents were nearly five times more likely to report ‘intense empathy’ than ‘lack of empathy’ (71% v 15%), and parents were nearly twice as likely (40% v 22%).
  4. Over three quarters of non-speaking autistic people with learning disabilities reported feeling ‘intense empathy’. Barely over 40% of parents/caregivers to such autistic people reported the same.

And to finish…

Whether you skim-read this article or waded through all 13,000+ words of it, thanks very much for doing so. Again, anyone reading this is welcome to take screenshots, and download the charts from this Dropbox folder. If you’re interested in more of my work then here are some social media links: Autistic Not Weird’s Facebook community, Instagram page and YouTube channel, as well as Chris Bonnello – Author on Facebook.

 

Of course, I’ll finish with reminding any remaining readers that although autism advocacy is my career, I received no grants for this survey and essentially did it for free. So if anyone reading this thinks my work is worth supporting, then firstly thank you very much and secondly here are some useful links:

Huge thanks once again to everyone who took part in the survey, to those in the acknowledgements who helped shape it, and to my Patreon supporters for providing me with so much stability and consistency.

I hope that those who read this article gain a lot from it, and that autistic lives ultimately end up better off as a result.

 

Take care,

Chris Bonnello

-  

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!

Underdogs, a near-future dystopia series where the heroes are teenagers with special needs, is a character-driven war story which pitches twelve people against an army of millions, balancing intense action with a deeply developed neurodiverse cast.

Book one can be found here:

Amazon UK | Amazon US | Amazon CA | Amazon AU
Audible (audiobook version)
Book Depository
Review page on Goodreads


Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
patreonbutton
Autistic Not Weird on Facebook

Autistic Not Weird on YouTube  

Twitter  |  Instagram

Copyright © Chris Bonnello 2015-2021  
error: