The National Autistic Society (NAS) ran a survey about terminology between December 2013 and February 2014, which informed its campaigning and led to the publication of the article Which terms should be used to describe autism? in Autism Journal in 2015.
As part of an otherwise frustrating dialogue with the NAS, Carol Povey, Director of its Centre for Autism, shared some of the processed anonymised data from this data as used internally by the NAS. A partial set of the cleaned data as processed for the article was later obtained from Liz Pellicano and Lorcan Kenny. The data for the article had been cleaned by the paper's authors in their initial submission and following review comments. Unfortunately, these data sets were shared in confidence and neither have been published.
In trying to better understand these datasets, I noticed some discrepancies between them. A concern is that the process of cleaning the data before analysis may affect survey-based articles on autism in a specific way. When both autistics and non-autistics are surveyed, the cleaning process appears to disproportionately affect the autistic cohort. Here's the text of the letter to the editor of the Autism Journal in which I detail this concern:
Does data cleaning disproportionately affect autistics?
In Kenny et al.’s paper (2016), titled ‘Which terms should be used to describe autism? Perspectives from the UK autism community’, the authors analysed data from the UK’s National Autistic Society’s (NAS) survey on terminology. In the paper, they detail how they removed a significant number of participants prior to data analysis. They state,
In all, 4622 people responded to the survey. Participants who (a) did not specify any connection with autism (n=19), (b) did not complete all four key questions on describing autism (n=453), (c) were under 18 years or preferred not to state their age (n = 284) and (d) were not resident in the United Kingdom or preferred not to state their place of residence (n=396) were excluded from the data set prior to analysis. Subsequent analysis was therefore based on complete responses from 3470 participants.
I believe that comparing results from the raw data and that of the data with these participants removed shows that this removal has disproportionately affected the processing for autistics compared to that for the other categories of respondents such as families and professionals.
For example, in Table 2, the modes for four rows for the ‘autistic’ column are different for the processed data compared to the raw results. Only one row is different for the ‘Parent’ and ‘Family/friend’ columns and none for the ‘Professional’ column.
I would suggest there is a reason for this. Anecdotally, autistics who have issues with the wording of survey questions or the possible set of answers often either object to continue filling in the survey or skip the offending questions (and often attempt to get in touch with the researchers for corrections and clarifications). There are 453 incomplete such entries in the NAS survey by autistics – which have been removed from analysis and, ultimately, were not taken into account for the processing in the final article.
This very limited comparison raises the hypotheses, supported by anecdotes, that cleaning of data in surveys targeted at both an autistic and non-autistic cohort may introduce a bias disproportionately affecting the responses from autistics. Further work on whole sets of data before and after the cleaning for several surveys is required to reach any conclusion.
Reference
Autistic responses
Looking solely at responses by autistics in the cleaned data, i.e., the autistic perspective, there are a few interesting outcomes (see tables below).
The preference for identity-first terminology (e.g., I am autistic) by autistics is clear:
Also ‘autistic person’ is always rated lower, by autistics, than ‘autistic' or 'is autistic’. This seem to imply that adding 'person' is redundant, though it may of course be context dependent.
Lastly, the second table below shows at least 53% of the autistic respondents were aspie, so the autistic respondents may not represent the full diversity of autistics.
What next?
Hopefully some researchers will investigate further whether the cleaning of data in surveys targeted at both an autistic and non-autistic cohort does introduce a bias disproportionately affecting the responses from autistics.
Several questions in the survey had very similar, but different, sets of answers and I wonder how many respondents analysed the subtlety of the different questions when answering them. (It also means that one cannot directly compare the different questions as the sets of answers are not identical.)
This important research paper raises many issues about accessibility at all stages of research, when surveys questions could be confusing and the way the data was analysed may have created bias disproportionately affecting autistic respondents, who may have felt unable to answer one or more of the questions. The solution to improve autism research is to involve autistics from the design to the analysis of research projects.
| Which words/phrases do you prefer to use when communicating about autism? (Select all that apply) | Autistic |
|---|---|
| Autism | 64% |
| Autistic | 61% |
| On the autism spectrum | 56% |
| Aspie | 47% |
| Autism spectrum disorder (ASD) | 39% |
| Autistic person | 36% |
| Has autism | 35% |
| High functioning autism (HFA) | 32% |
| Person with autism | 28% |
| Autism spectrum condition (ASC) | 28% |
| Low functioning autism (LFA) | 8% |
| Autist | 7% |
| Classic autism | 6% |
| Pervasive developmental disorder (PDD) | 5% |
| Kanner’s autism | 2% |
| Kanner’s syndrome | 1% |
| Other (please specify) | 20% |
| How do you describe yourself, your child, or those you work with? (Select all that apply) | Autistic |
|---|---|
| Has Asperger's | 53% |
| Aspergers syndrome | 51% |
| On the autism spectrum | 45% |
| Autistic | 43% |
| Aspie | 38% |
| Is autistic | 35% |
| Autism spectrum disorder (ASD) | 28% |
| Has autism | 28% |
| High functioning autism (HFA) | 23% |
| Autistic person | 22% |
| Autism spectrum condition (ASC) | 18% |
| Person with autism | 18% |
| Is Aspergic | 6% |
| Autist | 4% |
| Pervasive Developmental Disorder (PDD) | 3% |
| Classic autism | 2% |
| Low functioning autism (LFA) | 1% |
| Kanner’s autism | 1% |
| Kanner's syndrome | 0% |
| Other (please specify) | 11% |
| Please rate the following words or phrases (mode) | Autistic |
|---|---|
| Asperger syndrome | 5 |
| Aspie | 5 |
| On the autism spectrum | 4 |
| Autistic | 4 |
| Person with autism or person with Asperger’s | 4 |
| Has Asperger’s or autism | 4 |
| Autistic person | 3 |
| High functioning autism | 3 |
| Autism spectrum disorder (ASD) | 3 |
| Autism spectrum condition (ASC) | 3 |
This post was simultaneously published on the Speak up blog, which accepts comments.
[Update 2017-01-31] Cas published on Spacious Perspicacious the result of their autistic survey also showing a clear preference for identity-first terminology:
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%
[Update 2019-01-15] The responses in the 2008 survey of Autistic not weird, answered by 11,521 respondents, are also consistent with the earlier surveys:
[...] professionals (including me, once upon a time) are taught to use person-first language, but those on the spectrum themselves are more willing to claim the word “autistic” as their identity.
51.62% of autistic respondents use ‘autistic person’ only, versus 22.73% for non-autistic respondents with an autistic relative and 12.97% for non-autistic respondents who do not have an autistic relative. (The same groups of respondents use ‘person with autism’ only resp. 11.80%, 36.17% and 49.22%).
Bootnote Related post:
In March 2015, Met Detention, the Metropolitan Police Service (MPS) centralised command for police custody, invited independent custody visitors (ICVs) to review its Equality Impact Assessment (EIA) (pdf) and provide feedback. As ICVs we do surprise visits to police stations and talk to the persons being detained. As we are independent of the police and have regular experience of the custody environment, this request for feedback made lots of sense and was welcomed.
Several members of my ICV panel did provide feedback and ICVs from other boroughs likely did as well. As we were not informed as to how our feedback had been used, I asked for a copy of the updated Equality Impact Assessment. In February 2016, I received a copy… of the same document we had been sent to review a year earlier.
I subsequently asked via a Freedom of Information request for all the feedback received when creating and revising this Met Detention Equality Impact Assessment. Met Detention could only find a single feedback dated October 2015 (pdf), that briefly touches upon two issues of interest to Superintendents. Nothing else, neither the feedback from ICVs nor from anyone else.
And they apparently did an exhaustive search for any feedback received. The initial response to my request was delayed as
'Enquiries are still being made in relation to the second part of your request.'
The first part of my request was about the EIA documents, and the second part was about 'the feedback received following each review of these documents'. When a further response was sent with some versions of the EIAs attached, I was then told:
'With respect to the second part of your request, reasonable searches have been made and as at today's date no information relevant to your request has been located.'
And an internal review (delayed as well) explained that:
'the review is satisfied that reasonable enquiries were carried out in the original case with the most appropriate Unit (Met Detention) for ‘The feedback received following each review of these documents’. Following further enquiries only one relevant feedback email was located and is attached to this review - subject to the exemption of personal information by virtue of section 40(2)and(3).
The review is satisfied on the balance of probabilities that no further information is held which falls within the scope of your request for feedback following each Equality Impact Assessment.'
That a year after a review process was initiated, only one feedback can be found raises concern as to the validity of this consultation process. This is compounded by the experience that the feedback that was thought out and had been sent in was obviously ignored.
Bootnote 1: Here's a copy of the feedback I had sent (well within the three weeks we had been offered):
Thank you for sharing this EIA. Here is some feedback (in no particular order) which you may hopefully find useful.
- The findings for the suitability of 21 suites to support disabled and Muslim detainees, and Transgender detainees/staff on p. 8 is in a spreadsheet which is not accessible. Either make this spreadsheet accessible when sharing this EIA or remove the reference to it.
- The constant jumping between custody staff/workforce and MPS detainees/external with several terminology used is a bit confusing. It would help to have a clearer signposting of whether a section is about staff or detainees.
- There appears to be a strong focus on MH & juveniles, and also some mentions of wheelchair users. Impact of the custody on those with learning disabilities and/or who are autistics is lacking.
- There should be a section addressing hyper- and hypo-sensitivities. Sensory, noise and light hypersensitivities are common among autistics, but other combinations also happen and these are not exclusive to autistics. The custody environment can be a sensory nightmare severely affecting the functioning of those having such sensitivities.
- Custody staff tends to be reactive to detainees demands. Detainees with MH can find it difficult or impossible to make requests. A particular concern is of detainees getting dehydrated because they do not ask for water and custody staff is not proactive in offering it.
- In potential changes to the cell environment, facilities for the detainee to wash his/her hands should be considered. It is obviously hygienic, but is also a requirement before food can be touched and prayers for certain religions.
- A sex-related external impact that has been missed is ensuring that custody staff is mixed. There have been situations, especially when short of staff, when a custody suite shift has been operated only with female DDO, this meant that no male detainee could have a shower for instance.
A related point is that there should be representation of vulnerable and disabled individuals (with MH, LD and/or autistics) in forums affecting what’s happening in custody. With Met Detention being a central command, this can’t happen at the SNB level, I would be interested to learn what consultative forums exist at which custody will be looked into.
Thank you for forwarding my earlier comments. As the draft EIA was shared specifically asking for our feedback I do hope the responses received will be taken into account.
Two further thoughts about the EIA I should have included earlier:
- In relation to the point I already made about hypo and hyper sensitivities, there should be a mention in the EIA about interview rooms that are 'soft interview' environment. As I understand it these are less intimidating interview room, often used for children, vulnerable detainees, victims and the bereaved, etc. This is likely to be better for sensory needs (less echo, less smell of sweat, softer lighting, more physical comfort, etc).
I have seen a video filmed in such an interview room when attending a Crown Court in a case where the victim was a young autistic woman. I have never seen any such interviewing rooms in Islington or Hackney. Are they available elsewhere in the stations or do only some custody suites/stations have such rooms?
The guidance 'Think Autism. Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update.' has the police as one of its target audience.
- This guidance recommends the police to 'have access to expertise to support adults with autism and consider the most effective way of ensuring that autism awareness guidance/training is available to staff.' The EIA should highlight the impact on custody staff training and also how considerations are given for appropriate adults called for autistic detainees to have been trained about autism.
- The guidance also discusses dealings with 'issues such as training and awareness, screening, and reasonable adjustments and the use of IT systems to better support people with autism within the criminal justice system.' So the EIA should list what reasonable adjustment can be made for autistics in the custody environment.
Thank you. FYI, I just realised that there’s guidance from the College of Policing as well about sensory issues for autistics and other vulnerable detainees:
'Those carrying out the risk assessment for detainees experiencing mental ill health should consider whether there is any additional risk of short and longer-term harm. It is also important to identify specific areas which could adversely affect those who are vulnerable because of learning disabilities and difficulties. For example, people who have autism or Asperger’s syndrome can be highly sensitive to their environment, and loud noises or bright lights may in some cases cause distress and possibly even aggressive behaviour.
The risks that a detainee with mental ill health or learning disabilities may pose to themselves or others are individual to each case and cannot be generalised.
Being in a police cell can have an adverse effect on a person’s condition if they are already suffering from mental illness. In particular, isolation and the noise in a busy custody suite can be aggravating factors.
Mental ill health and alcohol/drug misuse often coexist and a person’s impulsivity may make it more likely that they will self-harm or consider suicide.'
Bootnote 2: To become an independent custody visitor and join the panel of the borough your live or work in, apply to the Mayor's Office for Policing and Crime (MOPAC).
Over the past two years, the Metropolitan Police Service (MPS) has detained fewer and fewer persons for longer and longer. Information obtained via a Freedom of Information request shows that all 740 police cells available 24/7 are staffed and run by Met Detention, the MPS centralised command for police custody. This transfer of control from the Borough Operational Command Units to Met Detention happened early 2015. The average occupancy rate of these cells has been 44% over this period. 20,465 persons were detained by the MPS in March 2014, 18, 457 in March 2015 (a 9.8% decrease) and 16,793 in March 2016 (a further 9% decrease).
The average waiting time between the arrival at a station and the authorisation of the detention by the custody sergeant has remained more or less the same at respectively 22, 22 and 21 minutes in March 2014, 2015 and 2016.
However, the average detention duration was already long in March 2014: 12 hours and 54 minutes and has been getting longer ever since. That increased by 4.5% to 13 hours and 20 minutes in March 2015, and further increased by 8.7% to 14 hours and 39 minutes in March 2016.
The average time spent in custody last month (including the initial waiting time) was 14 hours 59 minutes and 27 seconds, just 33 seconds short of 900 minutes (see graph below). That's 1 hour 45 minutes more than two years earlier.
That's not the only issue affecting the custody environment, custody suites are understaffed and a recruitment freeze on Designated Detention Officers has made the situation worse. One suggested solution is to close several custody suites.
As part of the autism acceptance month, I was invited to make a short presentation at the CLR James Library in Dalston, Hackney. Below are the preparatory notes I wrote for this short introduction to autism.
Being autistic is a different way to be human. An atypical way of experiencing and relating to the world. A different way to think and process information.
Being autistic is developmental, it is lifelong. It is not a mental illness though autistic people may have mental health issues such as anxiety and depression often brought on from the frustration of not being accepted.
'Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.' (Don't mourn for us; Jim Sinclair - 1993)
Autistics have spiky profiles, an unusual combination of abilities and challenges. Autistics can find some tasks easy and others difficult, and this may change depending not just on the task, but also on the environment, and recent experiences. You can imagine autistics as forming constellations (like stars).
Each autistic individual is different and will have different needs. Autistics are diverse in their autistic traits and their severity. Some have an unusually large vocabulary while others are non verbal. Some autistics work and have a family (but may still find it difficult to cope) while others need full-time support.
'Once you've met an autistic person, you've met one autistic person' (Lorna Wing)
Don’t believe the stereotypes.
Some autistics have deep empathy (even if expressing it can be difficult). Some are both trusting and trustworthy (white lies can be as abhorrent as any other lie). Some are conscientious and will persevere in difficult situations. Some are artistics. Some are experts. Some even have a sense of humour!
Some contribute to this society and many more would if we were better accepted.
People being unpredictable, social relationships may be hard. Autistics tend to lack an intuitive sense of what is appropriate to say and do in a social setting. Reading faces may not be intuitive either. Operating in groups or integrating a new group can be difficult as one has to figure out when to take turn in a conversation, accept some of it may be factually incorrect or boring, etc. It is also common for an autistic to have one or a few topics of special interest and be keen for most conversations to focus on these.
Sensory and information overload (which can result in pain), anxiety, difficulties communicating, etc. can cause great frustration leading to atypical behaviours, meltdows and shutdowns.
Processing the information coming in from the many senses all at once can be overwhelming. Also it is common for autistics to be over (hyper) and/or under (hypo) sensitive to some of their senses; and there are more than five, e.g., sight, hearing, taste, smell, touch, temperature, pain, kinaesthetic sense (proprioception), balance, etc.
So many senses are involved with food that eating and digesting often strongly affects autistics.
Autistics often tend to experience emotions more strongly, but may also appear not to have much emotional reaction or have difficulty moderating these emotions leading to outbursts.
Autistics might need to focus on listening, and therefore will avoid eye contact, which is often difficult and sometimes even painful, when concentrating.
Autistics might find subtle social conventions difficult, such as when people rely on implied conventions or do not say what they mean.
Autistics might be non-verbal and use Augmentative and Alternative Communication.
Autistics might find it difficult to deal with unpredictability, spontaneity and change, and require extensive planning and advance knowledge.
Also having to deal with many things at the same time may not be possible.
Stimming, calming repetitive movements or sounds that self-stimulate, and reducing stimuli helps with living. Autistic spaces where the environment and interactions are adapted to most autistic needs can be very calming places (however what is autism friendly for one autistic may be unhelpful to another). Meltdowns and/or shutdowns often happen when it is no longer possible to deal with the pain and/or stress being experienced.
As autism is an integral all-pervasive part of who autistics are – the way their brains and bodies work – many autistics are keen on the use of identity-first language and refer to themselves as 'autistics'.
Being called 'a person with autism' can be offensive as it implies that autistics should strive for a state when they are 'without autism'.
The medical model finds autism to be a professionally diagnosed condition (or even a disorder) that must ideally be cured and require interventions. A person is disabled and doctors offer to fix that person, to treat or cure the disability. Autism is defined as a neuro developmental disability characterised by impairments (DSM 5 / ICD 10):
Autism is legally recognised as a disability:
The social model considers that society must work to eliminate discrimination and accept us as we are in all our diversity. If someone has difficulties fitting in due to some impairments and/or differences, what is disabling is society not being inclusive. The aim is to remove all barriers, not just the physical ones, limiting life choices.
The world is neurodiverse, made up of individuals with a variety of brains and minds, most are neurotypical and some are neurodivergent including autistics and everyone else whose brain is not typical (e.g., epileptic, dyslexic, etc.). Being neurodivergent is not intrinsically positive or negative.
The social model celebrates a neurodiverse world in which autistics (and others) are fully accepted with all their differences. It focuses on the positives, e.g., attention to details, factual, etc.
Everyone's identity should be respected. Autistic behaviours, which are likely atypical but not anti-social, should be respected and accommodated for. E.g., some care should be shown for autistic sensory needs and executive function difficulties, especially during interactions.
Challenge stigma and discrimination: 'As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception. [...] Autistic persons should be respected, accepted and valued in our societies, and this can only be achieved by respecting, protecting and fulfilling their basic rights and freedoms.' (Discrimination against autistic persons, the rule rather than the exception; UN rights experts - 2015)
Society must show equality, respect and full inclusion of neurodivergents.
Some related posts:
First published on 2016-04-15; last updated on 2016-07-05.
