Wednesday, February 10, 2016

Autistic or Person With Autism?

A Wrongplanet member by the name of tetris recently performed a survey asking autistic people a few questions about how they preferred to be described. The results are posted here, but I'll also describe them here, and compare them with the only similar study I have found, this UK study.

Tetris had 321 respondents and four questions, with each question being responded to by 318-320 people. Only a small proportion skipped any questions.

The first question was 'Do you prefer Autistic or person with autism?' In response, 292 people (91.82%) said they preferred 'autistic'. Only 26 people (8.18%) preferred 'person with autism'.

The second question asked 'Do you mind if people use person with autism? (When it is maybe used interchangeably with autistic, this is not necessarily when it is insisted upon)' In response, 101 people (31.56%) said they would mind, and 219 people (68.44%) said they would mind.

The wording of this second question is a bit confusing to me. I had to do a double-take and read it over carefully, because in my experience, people sometimes answer 'do you mind?' questions in either direction (yes = 'you can do it' or yes = 'you shouldn't do it'). If others were similarly confused, it might make the results of this question unreliable. However, the results of this question do line up well with questions 1 and 3, so it might not be a major issue.

The third question asked 'Do you like it if people insist it should be person with autism?' This question, like the first one, got an overwhelmingly consistent response - 7 people (2.19%) said they liked it, 62 (19.38%) didn't care and 251 people (78.44%) disliked this.

It's interesting to note that, if we assume all those who disliked insistence on 'person with autism' self-described as 'autistic', that still leaves13.38% who use 'autistic' but don't mind others insisting on 'person with autism'. I wonder if these people have only a slight preference for 'autistic' over 'person with autism', and are happy using either term to describe themselves?

The fourth question addressed a different aspect of autism labeling - it asked 'Do you agree with functioning levels/labels? (LFA, HFA)'. In response, 52 people (16.25%) agreed with those labels, 56 people (17.50%) didn't care, and 212 people (66.25%) did not agree with those labels.

The UK study, meanwhile, asked people to tick off multiple labels from a list to indicate which ones they find acceptable for discussing autism. They studied autistic people, family members and professionals, but I will only discuss the results for autistic people. Note that they did not ask which the autistic people used to describe themselves, but more generally what they'd use to describe any autistic people.

To compare with tetris' first question, the UK study also found that 'autistic' was preferred over 'person with autism', but this preference was less pronounced - around 25% endorsed 'person with autism' and 60% endorsed 'autistic'.

Partly, this difference may be due to people being allowed to choose multiple options - so a person who finds both 'autistic' and 'person with autism' acceptable may have chosen both in the UK study, but would have had to choose between the two in tetris' study. This could explain the increased acceptance of 'person with autism' in the UK study, but it doesn't explain the reduced acceptance of 'autistic'.

However, the UK study also had 'autistic person' as an option (endorsed by 35%). It's possible that some people might be OK with being called 'an autistic person' but not with being called 'an autistic' (ie, they're OK with 'autistic' as an adjective but not a noun). The fact that these were two separate options in the UK study might have led people to see the 'autistic' option as implying use of that word as a noun, whereas the way tetris' first question is framed doesn't clearly imply either use. If we assume that everyone who chose 'autistic person' left 'autistic' unchecked, then the two together would make up 95% of the sample, similar to tetris' sample.

With regards to tetris' second question, the UK study found 25% endorsing 'person with autism', while tetris found that 31.56% did not mind if 'person with autism' was used. This similar percentage could imply that both questions are primarily tapping those individuals who use both terms interchangeably - probably preferring 'autistic', judging from tetris' question 1, but not strongly preferring that term.

The UK study did not have an equivalent to tetris' third question. But with regards to tetris' fourth question, the UK study did include 'high functioning autism' and 'low functioning autism' in their list of options. Approximately 30% of autistic respondents endorsed 'high functioning autism', while only around 5% endorsed 'low functioning autism'. This leaves 65-70% who did not endorse either term, lining up very well with the 66% in tetris' sample who did not agree with functioning labels. It is interesting, though, to consider that a substantial proportion of the UK sample were apparently OK with 'high functioning autism' but not 'low functioning autism'. I wonder what term(s) they'd prefer for the non-HFA individuals?

In any case, both studies agree on one important point - most autistic people prefer being called 'autistic people' rather than 'people with autism'. Although both studies found a few who preferred 'person with autism', over half of each sample endorsed 'autistic' or 'autistic person'

So which shows more respect - to use a phrase deemed by non-autistic people as 'respectful', or to describe people the way the want to be described?


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