I’ve spent part of the day yesterday looking into HESA data on staff and students who are reported to HESA for their annual data collections as having reported a disability. The results are pretty stunning.

Quick headlines – general:

According to HESA data, reporting re: invisible disabilities is astonishingly (at least to me!) low. The HESA categories are not great, but bracketing out concerns there for a moment, here’s what we have:

“No known disability/unknown” (falling very slightly year on year until last year) – 2014/15: 95.67%, 2020/21: 94.04%, 2021/22: 94.22%

“Mental health condition” – Sector wide this is reported as a disability for less than 1% of all staff on typical contracts and seems to be falling: 2020/21: 0.93%, 2021/22: 0.77%

“Social communication/Autistic spectrum disorder” follows a general upwards trend:

2014/15: 0.04%, 2015/16: 0.04%, 2016/17: 0.05%, 2017/18: 0.06%, 2018/19: 0.07%, 2019/20: 0.09%, 2020/21: 0.11%, 2021/22: 0.12%

Brief commentary:
Upwards trends are nice, but if we apprecaite that actual prevalence is probably 2-5% of the population, at this rate, the sector wouldn’t even get to 1% until 2075. We can and should have a chat about whether staff should feel like they need to report their autism as a disability, and maybe in a perfect world we wouldn’t need to. Or maybe in a perfect world disability wouldn’t be stigmatised and there wouldn’t be a downside to asking for accommodations. In any case, we are looking at rates of reporting that are exponentially below the actual rates of prevalence (prevalance of “mental health” e.g. low mood or clinical anxiety is generally accepted to be in double digits). Similar realities seem to hold for “Specific learning difficulty” (which I think is meant to be a proxy for dyslexia) and “Another disability, impairment or medical condition” categories. I’m not sure where ADHD is hiding in there

I was inspired to poke around in this data by a recent study by colleagues in the USA, which examined the increase in Autism prevalence data. cf. here: https://www.spectrumnews.org/news/u-s-autism-prevalence-continues-to-rise-as-race-and-sex-gaps-shrink-new-stats-show/

As many of you will be aware, prevalence data around autism spectrum conditions has been a soul-destroying ground for conspiracy theories and dissemination of false narratives about an “autism epidemic”. A range of researchers have refuted this over the years, but this study in particular emphasises the way that prevalence figures are increasing primarily due to improvements in diagnosis to counter bias around sex and ethnicity in diagnostic tools. It has become widely known that (obvious in retrospect given the spectrum concept!) that autism presents differently for different gender identities, and historically autistic Black and asian youth have been diagnosed with low IQ instead of autism, so the pool skews towards persons racialised as white as well.

Quick headlines – intersectional elements:

When we compare prevalence (and I’m just going to use autism as an example here, but we could do others) we see signs of this inequality: For 2021/22 AY, female staff = 0.08% reporting, male staff = 0.11%, roughly a 40% difference. That’s not great and seems to confirm that prevalence in reporting maps onto more general gender inequalities. If we look at ethnicity, it’s even more severe. Only 0.04% of persons who report their ethnicity as “Asian” also reported being autistic. These numbers are so small that they are statistically unreliable as HESA anonymises by rounding to 5s. So in 2021/22 only 5-10 people in the ENTIRE higher education sector, this is all staff both non-academic and academic reported autism as a disability. For staff who identify as “Black,” the count in 2021/22 is 0. This means that whomever was being counted as the 1-5 persons in 2020/21 either left the sector or stopped being counted.

The same patterns hold for students:

HESA data for UOB students from 21/22 shows only 0.20% of “Asian” students (6-10 total) 0.30% of “Black” students and 0.87% of “white” students identify being autistic as a disability. Again, for UOB students in 21/22, 0.40% of Female students and 0.96% of Male students. Among students who put down their sex as “Other” for HESA data sector wide 3.24% also reported autism as a disability.

For every category where I looked at UOB data against sector averages, UOB is below the median Half of the sector wide averages in some cases. This intensifies quite sharp questions I already had around why staff (like me!) choose not to report a disability to Uni HR, and by extension equality around who gets to access accommodations, and behind the scenes, cultural and structural injustice around access to diagnosis. It also sharpens questions raised above around the importance and salience of self-diagnosis.