Sharing: Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma – Gernsbacher – 2017 – Journal of Child Psychology and Psychiatry – Wiley Online Library

Ah… here’s progress…

three figures with one close up
How we talk about each other matters

Abstract

Numerous style guides, including those issued by the American Psychological and the American Psychiatric Associations, prescribe that writers use only person-first language so that nouns referring to persons (e.g. children) always precede phrases referring to characteristics (e.g. children with typical development). Person-first language is based on the premise that everyone, regardless of whether they have a disability, is a person-first, and therefore everyone should be referred to with person-first language. However, my analysis of scholarly writing suggests that person-first language is used more frequently to refer to children with disabilities than to refer to children without disabilities; person-first language is more frequently used to refer to children with disabilities than adults with disabilities; and person-first language is most frequently used to refer to children with the most stigmatized disabilities. Therefore, the use of person-first language in scholarly writing may actually accentuate stigma rather than attenuate it. Recommendations are forwarded for language use that may reduce stigma.

The use of person-first language in scholarly writing may accentuate stigma

Person-first language is the structural form in which a noun referring to a person or persons (e.g. person, people, individual, adults, or children) precedes a phrase referring to a disability (e.g. person with a disability, people with blindness, individual with intellectual disabilities, adults with dyslexia, and children with autism). Person-first language contrasts with identity-first language; in identity-first language, the disability, serving as an adjective, precedes the personhood-noun (e.g. disabled person, blind people, intellectually disabled individual, dyslexic adults, and autistic children).

Numerous style guides, including those issued by the American Psychological Association, the American Medical Association, the American Psychiatric Association, the American Speech-Language Hearing Association, and the Associated Press, prescribe that writers and speakers use only person-first language and avoid completely identity-first language. For example, the Publication Manual of the American Psychological Association (2010, p. 72) and the American Medical Association Manual of Style (2007, p. 416) explicitly tell writers to ‘put the person first.’

Read the rest: Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma – Gernsbacher – 2017 – Journal of Child Psychology and Psychiatry – Wiley Online Library

More data about #autistic identity and person language

10 Year Totals Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year Totals Ifl Pfl Spectrum Google Scholar (No Citations)

So, I changed up how I’m looking at the data on identity-first (“autistic”) vs. person-first (“with autism”) language. And I’ve added in some data for what I consider neutral language — “on the autism/autistic spectrum”. It seemed more accurate to me, to include that, so here’s what I found after a number of hours, yesterday.

10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)

Above. you can see the overall percentages of terminology, relative to each other. References to “with autism” (PFL) far outweigh references to being autistic or being on the spectrum. This is a review of scholarly literature, so that’s to be expected, I suppose.

10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)

Above, you can see the overall trends in terminology. I find it interesting that the “with autism” dropped around 2013, while “autistic” seemed to jump a bit. Aspergers references dropped slightly, after a minor surge in 2013 — probably because it was deprecated and removed from the DSM-V in 2013. References to Aspergers may have been replaced by references to “autistic”.

10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)
10 Year References Ifl Pfl Spectrum Google Scholar (No Citations)

I like the line chart above, because it shows the rise in “with autism” language. I may go back to the timeframe before and after the legislative appeal to use person-first language. I suspect it would show some interesting results. Maybe another day. Or week. Collecting this data takes time. Plus, Google Scholar was blocking me, because my very efficient link generator apparently set off some alarms about me being a bot.

Ha – if only…

10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)
10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)

I also looked at overall trends of PFL (“with autism”, “with Asperger’s Syndrome”, etc), IFL (“autistic” sans the references to “spectrum”), as well as neutral language (“on the autism spectrum”). There seems to have been a surge in neutral language from 2013 on, I guess when people couldn’t refer to Aspergers anymore, but they maybe didn’t want to call people “autistic” because of the ramifications or perception of it being a slur.

10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)
10 Year Totals Ifl Pfl Neutral Google Scholar (No Citations)

Here’s another look at that data, which shows the overall amount of talk about us. I find it so interesting that all this research as more than doubled in the past 10 years… as well as looking at how researchers refer to people like me. I believe there’s more research being done on what different areas are being researched, but I don’t have insight into that initiative.

Now that I have numbers I’m happy with — had to back up and rethink things, when my results were looking questionable — I can start digging into this some more. We all feel differently about how we’re referred to, and what we’re called — I just find it so interesting to study the people studying me and others like me, to get some insight into what they’re actually up to, how they conceptualize people like me, and exploring ways that we might actually address inequities and injustices which are sometimes unintended consequences of science.

It’s all so very interesting…

The words we use to make sense of the #autistic world

Google Scholar (No Citations) Term Trends Compare Volume Of All Children
Google Scholar (No Citations) Term Trends – Compare Volume Children vs. Boys vs. Girls (with autism and autistic) – only for these terms – plurals

Ever since I sat down to look at what words are being used by researchers to describe autistic people, I’ve been both amazed and unsurprised by the results. I’m amazed at the amount of research that’s been done that talks about “children”, versus explicitly calling out girls and boys. Look at the graphic above — there is just so much research about “children”, whereas research which explictly mentions boys and girls is absolutely dwarfed by the overwhelming volume of “children”-oriented studies. Looking at 2016, when there was an all-time high of 168 papers published about girls on the autism spectrum (with no citations listed), papers about “children” exceeded 20,000. That’s a huge difference.

Now, to be fair, it’s entirely possible that researchers are including explicit mentions of boys and girls in their “children” research. Let’s take a look at the numbers for that.

In 2016, there were 3,959 papers in Google Scholar which included references to “children with autism” +boys+girls, “children with Asperger +boys+girls, and “autistic children” +boys+girls. Take out those numbers, and you still have still 16,061 papers vs. 706 and 164 that are specific to boys and girls on the spectrum, respectively.

The digits look big, but when you look at the volume in a visualization, it tells an even more striking story.

It seems to me, as I mentioned yesterday, that there may very well be a perception that autistic kids can be studied as a whole, with generalizations made about how (what researchers perceive as) “autism” affects kids — and what can be done about it.

But wait – there’s more.

When I change the parameters for the search, and I put the terms in singular, rather than plural (e.g., “boy” and “girl” instead of “boys” and “girls”), I get a different view of things.  Suddenly, the research jumps up about 100-fold.  Instead of 202 papers on “autistic girls”, there are 2,550 papers on “+autistic+girl”. And the same thing happens for boys, as well.

When I expand my search about “children” references to include “+autistic+child” and “+child+with+autism”, it explodes the numbers for children, as well — up to 62,720 studies.

Google Scholar (No Citations) 2016 Research Volume (Boys / Girls / Children)
Google Scholar (No Citations) 2016 Research Volume (Boys / Girls / Children) – Keep in mind that the “children research” can also include references to boys and girls, so there may be some overlap.

So, in the end, it all depends how you look at things — what terms you use to define the discussion, what words you use to explore what others are thinking and prioritizing. And it’s important to dig deeper and not just jump to conclusions about what’s what.

My initial numbers indicated that research on boys was 4x as frequent as research on girls. But if you change the words from plural to singular, you get a very different view. So, as with anything, it’s important to dig deeper, give things more thought, and be open to surprises. What would science be, without its surprises?

10 Years of research about autistic children, boys, and girls

10-Year Research Volumes on "Children", "Boys", "Girls" described as "autistic", "with autism", or "with Asperger"
10-Year Research Volumes on “Children”, “Boys”, “Girls” described as “autistic”, “with autism”, or “with Asperger”

I pulled some more numbers, including “Asperger” in my search terminology, and here’s what I found for the overall volumes of research studies on autistic “children”, “boys”, and “girls”.

It really is amazing to me, how widely “children” is used. It clearly out-strips the designations of boys and girls.

And it makes me wonder if maybe — just maybe — this might be indicative of the lack of understanding about the very real differences between autistic boys and girls.

I mean, if they just lump all the kids under “children”, how much granularity are they going to find? How many differences will they identify? Will they even discern the existence of the phenotypes?

Food for thought.

PFL demographics – here’s how the use of person-first language stacks up between age groups

PFL Usage Comparison - Children vs. Adolescents vs. Adults - 10 years
PFL Usage Comparison – Children vs. Adolescents vs. Adults – 10 years

As you can see, person-first language about children really outstrips the identity-first language for adolescents and adults.

PFL Usage Comparison - Children vs. Adolescents vs. Adults - Percentages
PFL Usage Comparison – Children vs. Adolescents vs. Adults – Percentages

The percentages seem pretty similar to the identity-first language, with a corresponding increase in the volume and overall percentage representation of adults being researched.

I think that’s a good thing for the adults?

Maybe?

What puzzles me, is the dearth of research about adolescents. I might just be using the wrong terms. Maybe I should be searching for info on boys and girls. That seems reasonable.

And if I do that, then I need to search for explicit info on men and women.

Oh, this just gets more involved, as time goes on.  Seems I’ve opened up a sort of Pandora’s box, here…

But in a fun way 🙂

And here’s how the use of identity-first language stacks up between age groups

IFL Usage Comparison - Children vs. Adolescents vs. Adults
IFL Usage Comparison – Children vs. Adolescents vs. Adults over 10 Years

Clearly, people / researchers are more comfortable calling kids “autistic” than adolescents or adults. This is a picture of the usage of IFL in scholarly papers about autistic folks in all three age groups. I suspect that including “boys” and “girls” in the overall numbers would shed light on this, but looking at  the vast difference between children and adult references… yeah, it just kinda boggles the mind.

What’s the connotation of “autistic” for researchers, I wonder?

Do they think that only kids can be autistic?

Let’s look at the overall percentages:

IFL Usage Comparison - Children vs. Adolescents vs. Adults Percentages
IFL Usage Comparison – Children vs. Adolescents vs. Adults Percentages

Clearly, there’s more activity going on with researching autistic children.

Maybe because there’s the focus on “curing” the “disorder”? And if they look at kids, they might find a way to stop it from happening anymore?

Who knows? Personally, I don’t think that’s a good use of time and money.

And a lot of folks agree with me.

But I don’t fund the studies, I don’t set the agendas, and I certainly do not have visibility into the inner workings of the autism research world.

All I have is numbers…

“Autistic adults” or “adults with autism”? Whom are they/we researching?

Adults - IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations) A 10-Year Retrospective
Adults – IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
A 10-Year Retrospective

Annnnddd here we go… Research on autistic adults (that uses the terms “autistic” or “autism”) has actually been more voluminous than that of adolescents. I suspect that the use of Aspergers for teens had partly to do with that. But it also begs the question — if so much research has been done on autistic adults, all these years, why are we still struggling? Why indeed?

Here’s another view of the numbers:

Adults - IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations) A 10-Year Retrospective
Adults – IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
A 10-Year Retrospective

Again, having the two lines be the same weight does tell a more balanced story, but even so, it’s very clear that in research circles, person-first language is preferred. Maybe that’s what gets funded. It’d be interesting to know how many research proposals were submitted with identity-first language. But I don’t have access to that data.

I find this so interesting — again — because it shows very clearly where the sentiments lie – in the realm of person-first language. And even though in 2013, there was a relative jump in the use of “autistic adults” (likely in response to the deprecation of Aspergers and our surge in conscious, deliberate “autism pride”… still, the use of person-first language really outnumbers the identity-first terminology.

Adults - IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations) A 10-Year Retrospective
Adults – IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
A 10-Year Retrospective

When you consider how many adults are getting diagnosed, these days, and how much more visibility there is, I expect the 2017 numbers to jump, actually. I’ll have to re-visit them at the end of the year / next year. Then again, there is some sentiment that if autistic adults have been “managing” all these years, there’s not so much need to extend support and services to us.

Again, that’s another extended conversation for another time.

For now, let’s just look at the numbers…

“Autistic adolescents” or “adolescents with autism”? How do we refer to ourselves?

Adolescents - IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
Adolescents – IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
A 10-Year Retrospective

More data on the findings about how we talk about ourselves. I say “we”, because scholars are part of the human community, as are autistic folks. And when you refer to “one of them”, you’re actually referring to “one of us”. All of us.

Here’s a sample link for the queries I’ve been running, so you can see for yourself:

https://scholar.google.com/scholar?as_vis=0&q=”adolescents+with+autism”&hl=en&as_sdt=1,5&as_ylo=2014&as_yhi=2014

Still more evidence that person-first language is dominant (and notice how I’ve chosen the combination chart which makes the PFL physically more dominant — that supports my point in a not-so-subtle way, but which can be compelling if you’re not aware that’s what I’m doing. I’m clever that way 😉

Let’s look at how it looks with the two measures as lines of equal weight:

Adolescents - IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
Adolescents – IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)

See the difference. They’re both on “equal footing”, but it’s still clear that the person-first language is outstripping the identity-first terminology.

Again, in May 2013, the DSM-V deprecated (and removed) Aspergers from the available autism spectrum diagnoses. We had a slight dip in usage of both (not sure what took their place, or if there was just less research being published at that time), but then PFL picked up in 2014 and beyond, and it’s climbing.

Especially with regard to adolescents.

This is so interesting to me! I want to also collect data on “girls with autism” vs. “autistic girls”, as well as “boys with autism” vs. “autistic boys”. That can lead me down another path of inquiry, especially regarding the attention paid to boys vs. girls. But I just don’t have the time for that, right now.

I’ll definitely be looking into that in the future, however. “Adolescents” seems so distant, so clinical, so official. But I’m really looking for insights into scholarly literature and how professionals refer to us, so there’s some value in that.

The chief takeaway for this set of numbers – for me – is that the amount of research being done around adolescents on the autism spectrum has really exploded. Take a look:

Adolescents - IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
Adolescents – IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
A 10-Year Retrospective

Over the past 10 years, we went from ~500 papers in aggregate, to nearly 3,000 – almost a 600% increase in output.  And that’s not even including the research being done today.

Oh, if I only had a research assistant who could collect the numbers for me… But in the meantime, I’ve got my script that generates the links to the queries for me, so that’s a huge time-saver.

These numbers are not static. They change from day to day on Google Scholar, for some reason – one of the numbers changed by 10, just a few days later, for some reason. But the purpose of this study is not to get exact numbers, but get an overall sense of the prevalence of person-first language vs. identity-first language.

And for those purposes, I think my data points all do the trick.

“Autistic children” or “children with autism”? How do we talk about ourselves?

IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations) A 10-Year Retrospective

More data from my hunting and gathering around the use of person-first language (PFL – e.g., “person with autism”) and identity-first language (IFL – e.g., “autistic person”). This batch is for the words “autistic children” vs. “children with autism”. Again, I’ve found that the latter has been trending up, while the former has been trending down.

Interesting…

Here’s a sample link for the queries I’ve been running, so you can see for yourself:

https://scholar.google.com/scholar?as_vis=0&q=”children+with+autism”&hl=en&as_sdt=1,5&as_ylo=2014&as_yhi=2014

Once again, I’m not sure what happened in 2014 that caused the downward shift in identity-first references. Again, maybe it’s the “delay” effect from a lot of research that was kicked off several years prior. Also, I have to remember that this query for “children with autism” is included in the overall results for “with autism”. It’s a subset of the larger number, which will also include “adolescents with autism”, “adults with autism”… basically “_____ with autism”.

So, this is part of it.

I’m just not sure what happened in 2014 to change the direction of the language.

Oh wait – I do know!  The DSM-V completely removed Aspergers from its available diagnoses in May, 2013. So a whole lot more people ended up being referred to as “autistic” – even though a lot of us have persisted in calling ourselves “Aspies” or “Aspergians” or something similar, to differentiate ourselves from the other regions of the spectrum — and in a way, maintain our own identities. I think the PFL language surge may reflect a general uneasiness in the population of referring to autistic people as autistic, because of the associations, implications, and ramifications of the term “autistic”. There’s such a visceral reaction to it — for some parents (or so I’ve read online), it’s like using the “r-word”.

My differences with that view are a topic for another post. On another day.

You know, it’s funny — as someone who’s grown more sensitive to language over the past years, I’ve had this feeling that we’re fighting an uphill battle, when it comes to recognizing our autistic identities in how people refer to us — and how they think about us. I’ve had this sense that identity-first people are being “out-shouted” by  person-first adherents. I just never had the numbers to substantiate it.

Now I do. And it seems my sense was not far off.

More to come.

“Autistic” or “with autism”? How do scholars discuss us?

IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
IFL vs. PFL Language Incidence in Google Scholar Results (w/ citations)
A 10-Year Retrospective

I’m doing some data gathering and crunching around the use of person-first language (PFL – e.g., “person with autism”) and identity-first language (IFL – e.g., “autistic person”). I’ve searched Google Scholar for the number of incidences of the words “autistic” vs. “with autism”, and I found that the latter has been trending up, while the former has been trending down.

Interesting…

Here’s a sample link for the queries I’ve been running, so you can see for yourself:

https://scholar.google.com/scholar?as_vis=0&q=”with+autism”&hl=en&as_sdt=1,5&as_ylo=2014&as_yhi=2014

I’m not sure what happened in 2014 that cause the downward shift in identity-first references. I suspect this is “delay” effect from a lot of research that was kicked off several years prior. Maybe people got funding for studies, and they stuck with the titles they chose, when they first applied for their funding.

This is the first of many charts / graphs I’ll be generating over the coming weeks, as part of a study I’m doing about the prevalence of IFL vs. PFL as regards autism. I’ll have more details about the methods I’m using, the terminology I’m searching on, my content sources, etc.

I’m pretty wiped out from the past week, so I can’t get into discussing this in-depth right now. Just check out the graph above… I find it fascinating.

Aside from my general exhaustion, I’m clear about where I need to go with my job situation. I seem to have gotten “un-stuck” from some flaws of logic that were weighing me down.