Autistic Survey: Results

As you may be aware due to my splashing this all over my social network presence, I’ve been running a survey of autistic people for 11 days, since January 19th 2017.

There were 1340 usable responses at closing time. This is after I removed one duplicate, removed two or three abusive responses, and removed one at the request of the participant. I promoted on Tumblr, Twitter and Reddit, and I’m aware that others promoted on Facebook on my behalf. There’s a more detailed breakdown of where everyone came from further down.

This survey was ultimately pretty aimless and led by my own curiosity. I wanted to know how we as autistic people tend to think of ourselves, how we identify and describe ourselves, and whether/how we are diagnosed. I wanted to test a few stereotypes that I’ve picked up over the years. I also threw in a couple of questions for my own personal wossname, like monogamy/non-monogamy, and how people feel about Autism Speaks, etc.

I like to do this kind of stuff for fun, and am in no way professionally or academically educated/experienced. Because it’s on the internet, self-selecting, and mostly promoted on a small number of social networks, the results are hella biased and can’t really be held as representative of any group except autistic users of Tumblr, Twitter and Reddit. Still, with over 1,300 responses, I think the results are pretty interesting.



You can see the results in full on Google Sheets here. Beware, it is huge and unwieldy. Feel free to make a copy of the sheet and mess about with the stats however you want; if you publish anything using them I’d appreciate a link back to this blog post. :)

Read on for wild and amateurish speculation!

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IN RELATION TO THE AUTISM SPECTRUM



I’ve seen people refer to themselves in so many different ways, and with varying capitalisations, so I was curious to see what was most common.

Generally, people preferred not to capitalise autistic, aspie, or autie. People preferred “autism spectrum” over “autistic spectrum”. Aside from that, people overwhelmingly preferred identity-first language - “I am autistic” rather than “I have autism”. The fourth most popular was Asperger’s Syndrome, which I thought was interesting, because my understanding was that it’s slowly being phased out.

The top 5 ways for us to describe ourselves were:

I’m autistic - 66.3%



I’m on the [autism] spectrum - 40.8%



I’m Autistic - 30.9%



I have Asperger’s Syndrome - 29.9%



I have an ASD (autism spectrum disorder or autistic spectrum disorder) - 23.1%



It’s also worth noting that this question let you choose more than one answer, and lots of people chose both capitalisations. By this I mean that it was not uncommon for one person to choose both “I am autistic” and “I am Autistic”.

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DIAGNOSIS

For this question, participants could again select as many as applied. I wanted to allow people to, for example, tell us that they had been formally diagnosed in childhood and self-diagnosed later - or that they had been formally diagnosed as a result of self-diagnosing and then being later diagnosed by a specialist.

While the survey was ongoing, I had a conversation with someone who was opposed to self-diagnosis and felt that it shouldn’t have been an option on the form. I didn’t feel I could remove it so late in the game, and anyway I knew that if it hadn’t been an option I would’ve had to process hundreds of people’s manual write-in “i’m self-diagnosed” submissions, so I left that option there.

But I also wanted to acknowledge that self-diagnosis is very context-dependent. The best I could think of doing that wouldn’t take an enormous amount of work was to split the results by all self-diagnosed people (including people who are formally or informally professionally diagnosed) and people who are only self-diagnosed.

Here’s the numbers. Only two people didn’t answer this question.

Formal/professional/medical diagnosis - 49.0%



Self-diagnosis (all) - 45.8%



Self-diagnosis (where only this was selected) - 32.5%



Informal professional diagnosis - 22.5%



Formally diagnosed but not told about it at the time - 11.3%



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PRE-DIAGNOSIS

I was curious about this because I know a few people who self-diagnosed before they were professionally diagnosed.

This question was single-choice-only, and there was no “other” box. About a third of participants didn’t answer at all - which matches the ~33% who are only self-diagnosed in the last question.

If I had more spoons I might look into whether age plays a part here. A friend of mine suggested that unless you have parents and/or teachers who’re very on-the-ball, you might have to work out what’s going on on your own, and that means that a lot of people might conclude that they’re autistic in their teens - around when a lot of kids are working out, for example, that they’re not straight.

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AGE

Many graphs! Here’s the ages of all participants:

I feel I should very remind you here that this statistic shows how biased this survey is. This age graph is more representative of the ages of people who use Reddit, Tumblr, Twitter and Facebook than it is of autism in the general population by age.

This next graph is a bit more fun though:

Age of diagnosis (red) is relatively spread out, because a lot of folks were diagnosed in childhood - presumably before they could work out they were autistic on their own, and instigated by parents who are a bit sensible and pay attention to how their kids are generally in life. The youngest age of diagnosis was 1, and the oldest 55.

You can also see how around the early teens people started to work out that something was up (blue), and there’s a corresponding bump in the red diagnosis line a few years later as those suspicions turn into formal diagnosis for a chunk of people - 22% of people in an earlier question knew that they were autistic before they were formally diagnosed.

Overall the yellow and blue lines suggest that most people worked out they were autistic, like, 3 years ago - in their early teens. And the red line suggests that a bunch of those people got a formal diagnosis soon after. There are a lot of people, about a third, who haven’t got a formal diagnosis, but perhaps this is not surprising - most participants were only in their late teens to early twenties when they took the survey. Since services and support for autistic people are so bad perhaps there’s not much advantage to getting diagnosed, especially if you’ve made it this far maybe not even knowing you’re autistic.

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GENDER

My fave!

I’m sure a lot of you are aware of the anecdotal overlap between the trans/nonbinary and autistic communities. My gender identity clinic doctor, at the oldest gender identity clinic in the world, says that they see about ten times as many autistic people as are in the general population. And for a long time it was believed that autistic people were more likely to be gay - but now that being gay is more socially acceptable, the numbers are starting to converge. (I don’t have a source for this but I’d love one! If you’ve got it, throw it at me.) I’m curious to know whether there’s anything to suggest a similarity between the autistic-and-queer thing and the autistic-and-trans/nonbinary thing.

Again, this survey is very biased. It’s biased by age group and by the places participants came from, and the fact that it was a self-selecting sample on the internet. It would not be reasonable to extrapolate these figures to the general autistic population. On that note, here we go.

This is as many as I could fit onto the chart and still have all the gender labels showing. Here’s the percentages of the top 10:

nonbinary - 34.1%

woman (or girl if younger) - 33.7%

trans - 24.3%

man (or boy if younger) - 23.3%

transgender - 19.8%

agender - 15.9%

genderqueer - 15.8%

cisgender - 15.2%

fluid gender/genderfluid - 12.5%

enby - 11.8%



The low number of people identifying as cisgender is not as indicative as I first thought. It occurred to me that a lot of cisgender people wouldn’t describe themselves as such, and might not even know what it means. A lot of people whose genders differ from the ones they were assigned at birth also don’t relate to the trans/cis labels either.

The list of genders was taken from the annual survey of nonbinary people, which includes man and woman. I also added the three autism-related genders that I’ve ever heard of. There were a few comments in the feedback box by people who were annoyed by having to search through the long list for their gender; I’d guess around 5? But only two people skipped the question, so I’d guess the vast majority of people had no practical problems with it, even if a significant number of people may have disliked it. The wording of the question itself was taken from the results of a report from the Equality and Human Rights Commission, who found the following to be most inclusive: “Which of the following describes how you think of yourself?”



I was nosy about biases based on social networks, so I split the top 10 gender identities by social network:

Reddit is notably less diverse, with a significantly smaller percentage than Twitter and Tumblr for every gender identity except cisgender and man/boy. The only reason I can’t say the same for Reddit vs. Facebook is because Facebook respondents were slightly more likely to say they were cisgender.

It’s worth noting that for Twitter there are only 141 responses, so the respondents here are likely only a few degrees of separation from me - and I am aware that my Twitter followership is mostly queer nonbinary people! (They’re only 10% of respondents though.)

I’ve run a few surveys of subreddit memberships in the past, and the percentage of nonbinary people is usually around 6-7% for the subreddits I tend to spend time in. (/r/bulletjournal, for example, and I ran one for /r/polyamory years ago but I have no hope of finding the URL of the results.) So it’s interesting to me that the autistic people of Reddit are just as likely to be nonbinary than the general population of Reddit.

The subreddits I promoted in were /r/autism, /r/samplesize and /r/neurodiversity.

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SEXUAL AND ROMANTIC ORIENTATION

People could pick as many as they felt they identified with for both of these questions, and plenty picked more than one. For example, lots of people feel that terms like bisexual and asexual fit under the queer umbrella and could truthfully check queer and another term for one question.

The top five sexual orientations were:

asexual - 31.2%

queer - 30.3%

bisexual - 23.3%

pansexual - 18.4%

heterosexual - 16.8%



The top 5 romantic orientations were:

queer - 27.3%

panromantic - 25.1%

biromantic - 17.2%

heteroromantic - 15.2%

I don’t know - 15.2%



This one I messed up a little. I regret not including “gay” and “lesbian” as checkbox options from the start; I added them at around 100 respondents, though earlier responses containing those words will still be counted in the stats. I also didn’t include “straight” at any point.

I only picked up on “gay” and “lesbian” because someone specifically said that they’re gay and they find the word homosexual to be really unpleasant, so they would have liked for gay to be added to the list. No one asked for “straight” to be included in the list, but a few people did write it in the “other” box.

A few people mentioned in the “other” box that I had missed demisexual and demiromantic off the list. If more than one person mentions a particular label I tend to assume that there’s a lot more who would check the box if it was there, so if I do this kind of survey again I will include them.

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RELATIONSHIP PREFERENCES

I have no idea how this compares to the general population or the Tumblr-Reddit-Twitter-Facebook population. But hey, it’s pretty cool, huh? Here it is in number form.

It started out being super non-monogamous, because I am non-monogamous and so a lot of my online circles are too. I could tell when the survey was making it out of my immediate circle, because at around the 300 participants mark it started to get a lot more monogamous.

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LIVING SITUATION

I asked about current living situation and ideal living situation, and I’m thinking these figures are mostly representative of the fact that 85% of participants are between 11 and 30 years of age? I’m thinking as people get older they’re more likely to attain independence and an ideal living situation. But I’m not really sure!

56% of people live with the family that raised them, and only 8% of them want to.

30% of participants want to live alone, but only 13% are doing so.

A little over a third of people would ideally like to live with friends, which I think is lovely and a very underrated and under-represented lifestyle choice!

And 20% of us live with partners, whereas 65% of us would prefer that. I wonder how many people living with partners would rather be alone, but it would be too much work for me to find out so there we are. Forever a mystery.

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PERSON-FIRST vs. IDENTITY FIRST LANGUAGE

Identity-first language, as in “I’m autistic”. It acknowledges one’s autism as an inseparable part of one’s personality and sense of self.

Person-first language, as in “person with autism”. This seeks to define a person by their humanity rather than by their diagnosis.

I remembered that a while back the National Autistic Society in the UK did a survey and found that autistic people tend to prefer identity-first language. I was curious to see if my results would fit this, and they did - the majority of participants sometimes or always used identity-first language to describe their autism.

This was another question where you could select more than one answer, and there was an “other” box - but it’s very difficult for me to count those. Google Forms tells me 30 people selected “other”, but it doesn’t take into account the fact that some submissions were removed. If this number is accurate, then for perspective it’s less than half of the number who chose “I don’t know”.



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DISABLED?

This question asked whether participants would describe themselves as disabled, in whole or in part due to their autism diagnosis.

It seems that 83% of participants sometimes or always describe themselves as disabled due to their autism.

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DESCRIBING OUR ASD-NESS

This one was a make-it-up-as-I-go question; for about 100 responses I’d put “disorder” and “condition”, because those were the only terms I could think of. After a few people had entered “neurotype” I added it to the list, and around that time I noticed a few people had put “difference” so I added that too. That means, I think, that over 1,000 people had all four options available to choose from.

Neurotype took the lead pretty fast despite being added after the start, and stayed ahead.

I can kinda imagine how this happened. Disorder is pretty negative, difference is a little condescending for a lot of people, and condition is a very medical-subtext word. They could all, depending on context, carry a less than implication. Neurotype, on the other hand, is a very neutral word. Autism is one of multiple neurotypes, alongside non-autistic, and probably other neurotypes. It puts autistic people on the same level as non-autistic people in terms of power and social status and mental health. It’s interesting, and I can see the appeal.

Again, this was a question that let you choose multiple answers and it’s very difficult for me to count the “other” answers, but Google Forms tells me it’s 146, around 11%. These included words like “disability” and “impairment”, and also terms like “my brain” and “a way of thinking”.

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WHERE DID YOU FIND OUT ABOUT THIS SURVEY?

Again, a question that lets you choose more than one answer, and the “other” answers are hard to count, but Google Forms tells me it may be around 33, or 2.5%.

I feel like I’ve covered the stuff about diversity and bias regarding the social networks in sections above, so I don’t really have much to say here!

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FEELINGS ABOUT AUTISM SPEAKS

This question was just thrown in there because it’s something I’ve always wondered. A lot of people are very angry-shouty about Autism Speaks. Is this the prevalent opinion, or does it just seem that way because of the aforementioned angry-shoutiness?

That’s a yes, most people did not feel good about Autism Speaks. And it’s worth noting that I listed the “other” answers in the spreadsheet because wow.

People skipped having their vote counted as merely “bad” in order to vent some pretty visceral feelings here.

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OVERALL SUMMARY, THOUGHTS ETC.

Well, erm, I don’t really know what to say here. We are autistic and we use social networks, I guess? This was a lot of fun for me, and I hope the results are interesting for you too!

I threw this form together hastily, and that probably shows; I think I would be more thoughtful about the wording next time. I also used Google Forms, which is great and accessible and freeeeee but it does have some limitations - mainly in counting the “other” entries and not adjusting its Forms-associated summary graphs when I delete troll or duplicate entries. This is fine, it just takes more time and energy to get the blog post graphs and numbers to be helpful.

So yeah! Thank you for taking part, if you took part! And if you’d like to be notified of a future autistic survey that I may or may not run, please feel free to put your email address here. :)