Mon, 30 Nov 2015

Beware, undercover police officers carrying out behavioural detection in this area

Beware, plain clothes police officers operating in this area

‘Undercover officers trained to spot people carrying out terrorist reconnaissance are being covertly deployed to boost efforts to thwart an atrocity on British soil, the Guardian has learned.

They have been trained in behavioural detection and sent to areas deemed at risk of attack, such as transport hubs and high profile buildings.

A pilot of the scheme detecting suspicious behaviours already claims to have deterred hostile reconnaissance, a precursor to terrorist planning for a potential attack which involves the collection of information so terrorists can maximise the effectiveness of their violent actions.’

This will likely result in more arrests of innocent neurodivergent people who happen to be different, have an atypical behaviour and may not conform in their reaction when approached. Autistic behaviour can be found to be suspicious and an arrest is traumatic even when one appears almost too calm.

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Thu, 20 Aug 2015

Open letter to the NAS trustees

If you have had any dealings with the National Autistic Society, please read an open letter to its trustees calling for its use of inclusive language, and its focus on the positive of autism and on equal opportunities for autistic people. (This letter concludes a campaign of engagement with the National Autistic Society detailed further below.)

If you are supportive of this letter and are happy to sign it, email me and I’ll add your name as a signatory.

The letter was sent to the National Autistic Society trustees on 2015-09-04. They responded on 2015-09-11 with a short generic text (also copied below) ignoring all the issues raised in the letter and demonstrating a lack of respect to the signatories.

I have requested the membership department of the National Autistic Society to terminate my membership with immediate effect.


Open letter to the National Autistic Society trustees

2015-09-04

Dear NAS trustees,

Many autistic people feel alienated from the National Autistic Society (NAS). Last year, a large group of us sent a joint letter to trustees and senior management expressing our disquiet over being asked to contribute without necessarily being paid, including to a NAS conference on autism and employment. Despite an unsatisfactory response to that initial letter, some of the signatories have volunteered their time and effort to engage with the NAS in a conversation to improve how it portrays, represents and supports autistic people. This effort lasted seven months, and included meeting members of the Strategic Management Group, and the whole SMG, on multiple occasions and exchanging several documents. These as well as notes from the meetings are part of an accompanying background document(1) that is further referenced in this letter.

This process eventually came to an abrupt end when Mark Lever told us the NAS is not answerable to 'the demands of a small group’, and that he is accountable to the Trustees and not to us. This leaves us no other option than to share some of our concerns with you, the Trustees.

We are concerned that the NAS is a charity that is not listening to the very people – autistic people – it purports to support and address the needs of. We expect an autism-friendly environment from the NAS : the use of inclusive language, a focus on the positives of autism and equal opportunity for autistic people. That is unfortunately not the case.

We were told in the SMG draft plan, sent in May, and at the following meeting that our preferences in terminology, as supported by the NAS’s own survey(2), are to be ignored in favour of those of the ‘professionals’ or of those of all the ’stakeholders’ unless we happen to be the sole audience. We can be ignored, they matter. It is simple courtesy to refer to people by using the form of address they prefer.

Professionals and autistic people all have an interest in what happens within the field of autism. However, professionals have their own interests, which may not be the same as ours. They are stakeholders but not part of the autistic community, unless they are also autistic. Therefore, to claim that the survey reflects the wishes of the 'autism community' is inaccurate, if the wishes of professional stakeholders are included.

As the leading charity which claims to represent autistic peoples' interests, we would rather the NAS provide guidance instead of trying to adapt to what it thinks its audience of the moment may prefer – it should lead by example and encourage professionals to respect the preferences of autistic people about how they define us.

The SMG refused to commit publicly to the social model of disability. One of the few concrete commitments the SMG made to us, in out last meeting in June, is that the NAS tag line : 'We are the leading UK charity for people with autism (including Asperger syndrome) and their families.’ would not change. It has and now reads 'We are the leading UK charity for people on the autism spectrum (including Asperger syndrome) and their families. We provide information, support and pioneering services, and campaign for a better world for people with autism.’ The change does not respect the preferences of autistic people with regards to language use, however, neither did the previous version.

The NAS should follow best practice, exemplified by the slogan 'Nothing about us without us’ instead of its current approach of ‘Nothing about us without us being told what’s what by the NAS, who know what’s best for us'.

In Your Autism (Spring 2015), the NAS claims 'we aim to act as a microphone through which the voices of those whose lives are touched by autism are amplified.’ Leaving aside that a megaphone would be more appropriate than a microphone and the problems with the expression 'whose lives are touched by autism', we are calling on you to ensure that the NAS lives by its stated purpose and values, and amplifies our voices rather than distort and misrepresent. Also, the concept of lives touched by autism is so vague as to possibly exclude autistic people and give credibility to many people with negative attitudes.

Another key concern relates to the NAS employment practices. These are not autistic friendly (e.g., the job application documents include stipulations that are likely to unnecessarily exclude autistic people) and on occasions are opaque and appear to be exploitative of the very people the NAS was set up to help. They ask us to undertake work for them but often do not offer to pay, as they would when approaching any other freelance consultant. (See our discussion paper from April, in the accompanying background document, for more detailed examples.)

The current practice of failing to offer payment to autistic contributors or paying them at a different rate must be ended, highlighted initially in our joint letter sent in November last year. Publishing a (non-discriminatory) rate card for the different consultancy roles is necessary to avoid putting autistic individuals who may find it difficult to negotiate rates at a disadvantage. While the NAS encourages other employers to make appropriate accommodation, its offices have not been adjusted for autistic staff and the outcomes of consultations not implemented. This should be addressed as a priority. The NAS should strive for clarity and transparency and end discriminatory practices in how it deals with all staff and consultants including autistic ones.

We hope that you will accept these concerns and task the Chief Executive and the Strategic Management Group to address them immediately.

Best regards.

David Mery, Cos Michael, Caroline Hearst, Dinah Murray, Marion Hersh , Karen Leneh Buckle,  Selina Postgate, Zaffy Simone, Matthew Edmondson, Kathryn Clark, Lydia Andal, Larry Arnold, Gillian Loomes, Bobbi Rohrer Elman, Maurice Frank, pountney, Laura Williams, Richard Lewis, Brian Bond, Janine Booth & Lewis Hainey.

The following signatures were received after the letter was sent to the NAS trustees on 2015-09-04 (to add your name to this page, email David ): Joanna Treasure, Adrian Dean Whyatt, Joshua Hennessy.

(1) For extensive details of our protracted engagement with the NAS see the page ' Background - engaging with the NAS as autistic people ’.

(2) 'The term ‘autistic’ was endorsed by a large percentage of autistic adults (61%), family members/friends (52%) and parents (51%) but by considerably fewer professionals (38%). In contrast, ‘person with autism’ was endorsed by almost half (49%) of professionals but only by 28% and 22% of autistic adults and parents, respectively.' Source:  Which terms should be used to describe autism? Perspectives from the UK autism community , Autism Journal, Kenny et. al (2015).


Response from the National Autistic Society trustees

2015-09-11

Dear all

Thank you for your email and documents sent on 5th September 2015 to the NAS Board of Trustees. We always welcome input from people on the autism spectrum as well as family members and wider stakeholders. This helps to inform our strategy at the National Autistic Society and therefore helps us to achieve our vision of everyone on the autism spectrum being able to live the lives they choose.

We will consider your feedback as we plan future NAS activities, alongside feedback we receive from other individuals, through our services, schools, helpline and wider consultation work.

Thank you again for contacting us and for your contribution to the work of the National Autistic Society.

Dr Carol Homden | Chair of the Board of Trustees | The National Autistic Society

Background - engaging with the National Autistic Society as autistic people

This web page documents seven months of engagement with the National Autistic Society. It is background information for the Open letter to the National Autistic Society trustees .

2014-11-03 Joint letter to the National Autistic Society

We sent a joint letter on 2014-11-03 addressed to Carol Homden (Chair of Trustee, The National Autistic Society), Carol Povey (Director of the Centre for Autism, The National Autistic Society), Mark Lever (Chief Executive at The National Autistic Society) and Sophie Castell (Trustee, The National Autistic Society).
Dear Carol H [omden], Carol P [ovey], Mark [Lever] and Sophie [Castell],

We are writing as friends, members and supporters of the NAS, to voice our concerns about the way Ask Autism, an NAS offshoot, is working for and with us as autistic adults. We understand Ask Autism is budget constrained, but this cannot be used as an excuse to work with external autistic persons in a manner that goes against the NAS principles.

We are being asked to submit proposals for a conference on autism and employment. The terms on which we are asked to do this are that we will be paid expenses, enabled to attend the conference free and if there is money left over we could be offered it. Ironically this is for a conference about autism and employment.

These terms assume that proposers do not require payment – that we have an income from another source, or independent wealth, or access to the benefits system – none of which we feel are appropriate assumptions. Of course while people should be free to donate their time should they so choose, in a business type charity (which is what the NAS has become) we think it is wrong to assume that autistic people should volunteer their work for nothing. If the NAS believes in equality of opportunity then it should acknowledge that both freelancers and staff members should be paid for their work.

When contributing to an Ask Autism training module, at least one autistic adult was required to volunteer his effort for free to enable his contribution to be included.

We are keen to work with the NAS and Ask Autism but are unhappy with the way the NAS is currently operating Ask Autism. Paying autistic people for our work and recognising our skills needs to be a foundational principle of Ask Autism and other NAS offshoots. It is especially difficult to understand why this is not happening in instances where the work is going towards a commercial offering as is the case in the training module.

We hope you will see your way to ensuring that the NAS and its offshoots always appropriately remunerate the work of autistic people.

Janine Booth, Kabie Brook, Kevin Brook, Karen Leneh Buckle (Kalen), Andrew Denovan, Yo Dunn, Caroline Hearst, Marion Hersh, Wenn Lawson, Lyte, David Mery, Cos Michael, Damian Milton, Dinah Murray, Selina Postgate and Zaffy Simone.

2014-11-07 Response from Carol Povey

Carol Povey replied on 2014-11-07 :
Hi Caroline,

Many thanks for your correspondence. I assume that as the email came from yourself you are happy for me to respond to you and that you will cascade this response to the wider group who signed the letter. I do understand it has been written to try to help us to ensure ask autism is as good as it can be, and will try to respond to your comments as best I can.

Firstly, ask autism was always going to be a challenging project. We have been enormously appreciative of the input throughout from so many autistic people who have supported and contributed to the work in many different ways. Nevertheless, we are struggling to sell the modules in the volume we had planned. We do believe it’s a great product, but need to change our marketing plans to ensure it sells as we had hoped. Without those sales, there is no funding to pay for both the staff who work on the project and activities such as the proposed conference.

Over the last 12 months, we have paid 30 people with autism for work on “Ask Autism”. This is in addition to the staff employed within the team, all of whom are on the spectrum. People have been paid on a sessional basis for the following activities :
  • Developing modules for Ask autism
  • presenting at the autism show.
  • Other speaker events
  • Filming and production for the Active for Autism video

We are just about to pay another 2 people for their work on the criminal justice module. In total we have paid £2,707 to people on the spectrum. Where we don’t pay people, we try to be very clear, and ensure that they understand their work is on a voluntary basis.

With regard to the conference, this is being organised by the ask autism team on a very different model than is usually used within our conference department. This is because we expect the main audience to be people on the spectrum and families, rather than professionals. This was the makeup of the audience at the last ask autism conference. We are trying to access external funding which would enable us to pay people, but without that funding the budget is low (10k) The fees are as follows;

Standard Rate exc VAT

Professionals - £175

People on low income - £70

Exhibitors * - £225

To break even, we need 90 people attending (there were only had 64 last year). This is without paying speakers.

I realise I have gone into more detail that I would in a response to most letters, but think it may help to understand the constraints within which the team are working.

I think it may also be helpful to go back to our initial aims for ask autism to examine how far we have progressed in meeting those aims. The key aim was to develop online training modules, written and developed by people on the spectrum, to improve understanding and practice of professionals. This has been done, and although they are not selling as well as we had planned, they are a fabulous resource which is being further developed. This has given us a way of working, involving people on the spectrum, which is moving further to the heart of the NAS all the time. I am moving more and more towards the belief that fully involving people on the spectrum into the day to day life of the NAS should not be seen as a peripheral activity, held within in ask autism, but as the way we work, in every department, in every area of our work. This is challenging, particularly in such difficult financial times, but we are determined to grow the number of opportunities we offer, directly or indirectly to people on the spectrum. This is not the responsibility of the ask autism team, but of every one of us. Ask Autism has been a great springboard for further integration of people on the spectrum into the life of the NAS, and this is improving daily, though we recognise there remains a long way to go.

I hope this has answered some of your concerns, and I remain thankful for you bringing up these issues, which I know are so very important to each of you. If anyone would like to discuss this further, please contact me.

Best wishes

Carol

2014-11-08 Follow-up by Cos Michael

Both Cos Michael and David Mery took on Carol Povey’s offer to be contacted by anyone who would like to discuss further.

Cos Michael wrote a follow-up to Carol Povey on 2014-11-08 :
Dear Carol,

Thanks for responding to Caroline’s email on behalf of the group. You invite us to respond and I think several of us will have some points. Here are mine :

An interesting analogy :

  • My sister is autistic and is a qualified commercial artist. Three or four years ago, having won an NAS painting competition and having had one of her Christmas card designs used by the NAS, she offered to contribute artwork, free of charge, to the NAS, hoping they might sell prints as a fundraiser. She was told that the NAS could not accept her offer as to use her work without paying her would be exploiting the labour of an autistic person.

To respond to your points :

  • Ask Autism runs as a commercial venture, as does the NAS’s conference department. As a commercial venture, NAS conferences charge professionals £225+VAT, whilst Ask Autism charge only £175. I spoke at a conference in July that charged professional delegates over £400. Mark was the keynote speaker. They repeated the conference in Manchester a few weeks ago and delegate numbers were up. Ask Autism needs charge a market rate to professional delegates, rather than penalise contributors for the shortfall.

  • NAS conferences are properly marketed – I do not know whether Ask Autism conferences are marketed at all as I have never seen them advertised. If professionals wanting to improve their knowledge do not attend Ask A conferences, is it because they are not interested in our voice, which begs the question of why they pay autistic people as consultants, or is it because they are unaware of the conferences? They are not mentioned, even through a link, on the NAS’s Conferences and events landing page on the website. The Information for Professionals landing page advertises Ask A’ training, but doesn’t mention their conferences anywhere, etc.

  • I do not see why autistic freelancers are being expected to subsidise the shortcomings of the Ask Autism marketing department, or why the NAS website condemns their autistic conferences to a backwater page which can only be found if you know what to look for. It begs the question of whether the NAS actually values its autistic voice? You say it does, but in this area certainly, the evidence is lacking.

A temporary suggestion :

  • While Ask Autism is getting its act together, perhaps anyone who has presented for no money ought to be allowed entry into other Ask Autism conferences for no money? They clearly need people to fill empty seats and exist to give autistic people a voice in debate. I can’t afford to attend Ask Autism conferences and until Ask Autism can afford to pay me, it seems like a fair exchange. I doubt many non-autistic freelancers would be impressed at this barter and neither am I, but it is something in lieu, rather than nothing at all.

These points are in keeping with the NAS Mission and Strategic aims so I hope they are received in that spirit.

2014-11-11 Follow-up by David Mery

And David Mery wrote a follow-up to Carol Povey on 2014-11-11 :
Carol,

Thank you for your response.

I appreciate you are struggling with sales of the Ask Autism modules, however making savings by not offering a proper remuneration to autistic contributors many not be the best cost cutting measure. It demonstrates actual priorities of the NAS that are far from the claimed ones. Furthermore the signals being given by not paying some autistic contributors, and recently lowering the cost of the modules and not renewing Damian's contract are not positive ones for the future of Ask Autism.

I happened to be one unpaid contributor to the CJS module and from your comment that you 'are just about to pay another 2 people for their work’ on this module I wonder if I’m the only one who didn’t get paid. Yes, communication was clear that Ask Autism had no budget to pay (some) contributors (only travel expenses; living in London, my expenses were minimum and not worth claiming) however I immediately queried this. I was offered to have my concerns escalated, but I was never given any specific response. It became clear that the Ask Autism staff were not in a position to address this issue and that no one else seemed able to. I am very happy to volunteer for charitable projects (and regularly do), but not for commercial ones. The Ask Autism modules and the conference are commercial offerings. I eventually accepted to be interviewed for the CJS module for free, but it was a difficult decision. I somewhat reluctantly accepted as I also want this module to be as good as possible as this is a topic that needs to be better understood by many.

There are other issues :

  • Parity of esteem : either everyone should be paid fairly or no one. The interview was done in offices in London, but not at the NAS offices (so probably incurring an avoidable cost), and there was a crew of two dealing with the video and two persons from the Ask Autism team. I suspect not everyone in that room was volunteering their time.

  • In his response Cos suggested as a temporary solution some in kind benefits. Any in kind benefits offered should be generous. The one in kind benefit I was promised was to have free access to the CJS module when it is completed. Why not offer free access to all the Ask Autism modules to all contributors to Ask Autism? This has no cost to Ask Autism and being able to watch an existing module beforehand would ensure that module contributions are done in a style consistent with the existing modules, which brings me to my next point.

  • When I was first contacted by Damian we discussed the editorial content of my contribution. When the relationship was taken over by the Ask Autism staff, discussion about the content stopped except for a list of questions sent the day before the interview. I had prepared some notes that I reworked to fit the questions and didn’t get any feedback. I also had asked for more information about the modules but didn’t get any. I voiced my interest to review the module and this was accepted, but I haven’t heard any further about the module apart from when I suggested another contributor (who happens to work for the NAS) I was told that the module was delayed… as more contributors were sought.

  • The video interview itself was short as I was just asked the questions I had been sent the day before and it was over. I could say whatever I remembered from my notes, but was not given any prompting as I got the impression that even though I had sent them in advance they had not been read. I know the video will be edited down, however from my experience of pre-recorded video interviews (albeit in a slightly different context, as mostly for TV news and documentaries) more footage is usually recorded to give more opportunities to the editor.

  • After having been told that if I wanted to contribute to this module I had to volunteer, offered poor in kind benefit and been shown very little interest in the editorial content, came the experience of the release form.

    The terms of the release form were entirely tilted in favour of NAS. There was an initial resistance when I explained that 'I’m happy for the interview to be used in any way by the NAS both in the Criminal Justice online learning modules and for their promotion (but not for other purposes). I’m happy for NAS to supply the interview to other organisations for editorial purpose for a matter related to the Criminal Justice online learning modules. I’m happy to be identified by name. Basically any use to do with the Ask Autism modules or their promotion is fine, for other uses, in particular commercial ones, you would need to ask me first.’ The Brand team had to be involved as well (how many staff, at what cost to NAS?). I wished the same amount of energy spent by NAS arguing this release form had been spent discussing the editorial content of the module.

I have also gone into much details, but I feel this is important to give you an inkling of what is the experience of an autistic contributor to an Ask Autism module. The initial conversation with Damian was positive, all that happened after was not. I very much wish the Ask Autism CJS module to be successful as that is desperately needed and there seems to be some recent recognition of this need by the police and some researchers, but the opaqueness of the process does not instil confidence.

Regarding marketing of Ask Autism, why the only place I saw a mention of the new pricing of the modules was the NAS magazine (which is only available to members)? This could have been used as an opportunity for a news item. Searching in the news section for Ask Autism brings up only the Autism Show press releases (where it is mentioned among many other initiatives) and does not even find any press releases for the launch of new modules or Ask Autism events, were there any? (On a slightly unrelated note, try to find more about AutismCon, on the NAS website as if you didn’t know the event’s name, i.e, you can’t search for it; hints : it’s not in the event section, nor on the calendar.)

As for your encouraging newly found 'belief that fully involving people on the spectrum into the day to day life of the NAS should not be seen as a peripheral activity’, I look forward to learning what concrete measure you will take. Will you make any announcement in this regard at the AGM?

Rgds.

-d

2015-01-20 Meeting with Carol Povey

Following this exchange of emails a smaller group invited Carol Povey to meet at Candid Cafe, a cafe close to the National Autistic Society main offices, on 2015–01-20. This meeting was attended by Caroline Hearst, Cos Michael, Dinah Murray and David Mery.

Here’s what we discussed :

Carol Povey later added :
I’m checking with Mark [Lever] when we would be able to do a full SMG meeting, should be able to get back to you on that. With regard to always paying autistic people for their time, I’m loath to say we would always adhere to this, as we use volunteers all the time, (over 2,000) autistic and non autistic, and we wouldn’t want to get into a situation where we are, for example, paying some befrienders or branch officers (who are autistic) and not paying others (who are not) The principle is that we will try, where possible, to ensure autistic people are recompensed for their time and skills and any work done, and we wouldn’t not (excuse the double neg) pay autistic people where we would pay people who are not autistic (if that makes sense) e.g. we offer internships in some areas and whilst there is an open recruitment process, we would always try to give these employment opportunities to suitably qualified autistic people if possible, recognising the struggle they have to build a CV.

2015-04-18 Discussion paper for the Strategic Management Group

We agreed to meet the National Autistic Society’s Strategic Management Group on 2015-04-27 and sent a discussion paper, on 2015-04-18, to be discussed at the meeting :
Introduction

Although this paper has been put together by a small group, it is the result of a far wider ranging conversation within the autistic community. In essence, many autistic adults believe the NAS neither supports or respects us. It appears to be an organisation aiming to promote the interests of parents of autistic children and young people, rather than autistic people as a whole. We would like the SMG to reflect upon this and ask itself whether the NAS should admit this and change its name to reflect this focus, or become the inclusive organisation implied by its name.

We see some good pilot projects that come and go, but there is no follow up. They are project funded, rather than core work. Adults generally get referred to pdfs which refer them to organisations who refer them to pdfs. There is a helpline which is so oversubscribed that people cannot get the help they need at the point it is needed. What percentage of its £90m budget does the NAS spend supporting adults, not in education or in NAS residential accommodation?

Many aspects of the NAS have caused consternation in the autistic community, but given the limited time available, we have concentrated on the two below.

Inclusive language

How the NAS refers to autistic people and how we are represented in NAS publications, online and on paper. As is known, adults are over half of all autistic people and we are usually referred to as children, as "them" or as "people with autism” [This page on 'What is autism and Asperger syndrome?’ has since been broken into the two pages What is autism? and What is Asperger syndrome , but the content has not changed]. More should be written by autistic people about our issues, rather than about us by people who regard us as "other".

To disseminate good practice on inclusiveness, NAS website might include a page supporting the social model, with interviews of autistic persons in a similar way to SCOPE’s 'The social model of disability’ web page.

Examples

The website is indecipherable, difficult to negotiate and full of person-first language which is not the preferred language of the majority of autistic people.

The article on terminology (p. 10) of the Spring 2015 issue of Your Autism, stated that : ‘together, people rated the term ‘on the autism spectrum’ the highest’ and ‘…adults on the autism spectrum preferred the terms ‘on the autism spectrum’  and ‘autistic’’. Yet person-first language is used throughout the NAS website, e.g., the Home page . Updating the whole website will take time, but the NAS has been claiming the website is undergoing a redesign since at least 2011. Surely respecting autistic adults on the home page is fairly basic?

The language used by the NAS to define autism is entirely negative. The box next to the video on the website page Autism and Asperger syndrome : an introduction [although the content of that page has not changed, the link to it has, it is now at Autism : an introduction ] refers exclusively to problems. The website page, What is autism? [now available at What is autism? ]has a section on the ‘difficulties’, but not on the positives. The NAS should always point out positives as well as negatives, e.g., “Many people with autism have intense special interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. Some people with autism may eventually be able to work or study in related areas. For others, it will remain a hobby.” This sets expectations as low as it is possible to do. Why not state that autistic traits may be beneficial to many careers? Check out Silicon Valley. See the skillset, rather than the hobby. E.g., online games payers develop strategic skills. Extrapolate this into how it might translate into forward planning, scheduling, etc. People who process slowly might be suited to slow processes, e.g., gardening, etc.

In March, when sent for testing, the Ask Autism module on policing still had many mentions of ‘people with autism’. The module states that ‘people with autism may become involved in criminality’ instead of ‘autistic people may become involved with the criminal justice system as a suspects, witnesses, victims, etc. Are autistic people more often perpetrators of crime or victims? The NAS ought to be leading the way in righting prejudicial thinking, rather than implying that autistic people are likely to be criminals.

Why is the NAS magazine called ‘Your Autism’ when the vast majority of members are not autistic? Do the members own autism?

Some autistic contributors to ‘Your Autism’ have had their language edited to comply with branding.  Surely the NAS believes that autistic voices should be heard, not doctored? Furthermore the latest issue [Spring 2015] explains that ‘we (at NAS) aim to act as a microphone through which the voices of those whose lives are touched by autism are amplified.’ Autistic people are not a homogenised cohort with a limited vocabulary and no individuality. The editorial team should understand this and not be such a slave to branding consistency that they cannot permit autistic people the right to self-expression. Perhaps a small committee of paid autistic people could act as consultants  in decisions as to how autism and autistic people are portrayed, in a similar way to consumer advisors in mental health.

NAS as an employer :

The NAS should make adjustments for autistic employees, rather than demanding autistic employees make adjustments for the NAS. The NAS extols other organisations to make adjustments from which it then excuses itself. The NAS should be proactive in this, leading by example.

Staff

According to the National Autistic Society’s 2012 survey, only 15% of autistic adults in the UK are in full-time paid employment. Quote from the NAS Impact Report 2014 ‘In a survey supporting our commitment to employ people with autism and other disabilities, 6.4% of respondents said that they had autism.’ Note : that’s out of a workforce of about 3,500. Is this a percentage to be proud of, as the leading voice for employment of autistic adults?

Mencap demonstrates best practice by employing a high percentages of learning disabled people in governance positions and throughout their organisation. Look for example at Mencap’s guide to ‘Applying if you have a learning disability’ .

All recruitment documents should be reviewed to ensure that they are appropriate for autistic applicants. Employees and appropriate autistic adults should be part of the consultative process when designing forms and working practices.

Some of the NAS required competencies document accompanying any NAS job ads appears geared to exclude autistics with such requirements as 'I deal positively with last minute changes and interruptions.’

The NAS claims to prioritise autistic applicants if they are suitably able, without making actual adaptations to either their processes or the working environment. If Microsoft can do it , why not the NAS?

Working environments should be designed to accommodate autistic employees. The NAS has recently redesigned many of the working areas of its HQ, creating an even less autism friendly environment than existed previously. There are open plan offices with desks arranged en bloc, so workers face each other, with no sound baffling, no delineation of private space, no quiet areas; and bright lighting throughout. This is a sensory nightmare with no filtering of light, sound, etc., not an autism friendly workspace.

We suggest a mentoring scheme employing autistic adults to mentor others.  If the NAS truly wishes to be an inclusive organisation, it would benefit from having a committee of autistic people who monitor its employment practises, or employ an external autistic organisation to do this.

How can the employment of ‘zero hours’ staff to support autistic people be justified? Apart from the ethics of this method, it contradicts the NAS advice on consistency of care. Autistic people need to build relationships of trust and know the person who enters their home. The carer needs to understand the communication needs, sensory difficulties and preferences of the person they support. Both need to know they have the time to accomplish things and not be stressed by the constraints of this practice.

Autism awareness is supposed to be part of the NAS induction process. We believe such training needs to be delivered face to face, by autistic people, as the processing of a mass an online course does not meet this requirement in a meaningful manner. Currently not all staff receive this training. Volunteers who work on the Helpline should be included in this, as recently a helpline volunteer told a caller they did not have this training. Perhaps a certificate of completion could be issued before paid or unpaid NAS workers are permitted to interact with the public as NAS representatives.

Freelance autistic professionals

The NAS expects to pay for the services of freelance professionals, when commissioning information sheets, website content, etc. It pays its own employees to produce such material. Yet it routinely expects autistic professionals to contribute unpaid. At conferences, most speakers are in employment and their time is paid for by their employer. Yet freelance autistic professionals are expected to present at conferences, write for NAS publications, forums, etc, and work unpaid for Ask Autism. People interviewed for an Ask Autism module were not offered payment, yet the two Ask Autism staff and two videographers present for the interview likely were. The NAS should not expect autistic people to volunteer – the NAS is the charity, not autistic people. In addition to, or at least in lieu of payment when the contributor prefers not to be paid, the NAS should consider benefits in kind, such as access to all Ask Autism modules, access to conferences, etc.

We believe that the NAS should become pro-active in raising awareness of the talents of autistic adults. Rather than the same few people delivering the same few soundbites, the charity should recruit and train autistic people to speak at conferences, and be part of seminars and discussion groups. 

Caroline Hearst, Cos Michael, Dinah Murray, David Mery. April 2015

2015-04-27 Meeting the Strategic Management Group

Caroline Hearst, Cos Michael and David Mery participated in a discussion slot at the Strategic Management Group meeting on 2015-04-27.

Around the table with us were Mark Milton (Chief Operating Officer), Hanna Barnett (Head of Adult Services), Jenny Paterson (Director for Scotland), Wande Showunmi (Director of Human Resources), Jane Harris (Director of External Affairs & Social Change), Jacqui Ashton Smith (Executive Director of Education), Mark Lever (Chief Executive), Alastair Graham (Director of Fundraising & Marketing), Paul Harper (Director of Finance, IT and Resources), Carol Povey (Director of the NAS Centre for Autism) and Aparajita Ray (PA to SMG).

Carol Povey set the agenda for the discussion as looking at the ways the National Autistic Society engages with autistic adults, pointing out that it was useful for us to meet with the Strategic Management Group as this affects every part of the organisation.

We found the session frustrating as it ended up being mostly a Q&A instead of the discussion we had anticipated. We had the impression that most senior managers had not read our discussion paper and that valuable time was spent explaining what we had written.

We reiterated what was in our discussion paper, arguing that the NAS should not choose between autistics people and parents, that the staff should have an understanding of autism, that it should respect autistic people by using our preferred terminology and not portray autism in a negative way, that it should publicly adopt the social model of disability and ensure better working environment for its (autistic) staff.

Mark Lever concluded by asking us to highlight three areas to targets their efforts first where the biggest difference would be felt.

After we pointed out that our discussion paper focused on inclusive language, presentation of autistics people and employment, we agreed we would send a priorities document.

Mark Lever suggested as next steps that the SMG would create a draft programme to address our concerns as they're the right things to do and that we would then have another meeting with a smaller group so we could review that plan.

2015-05-01 Our priorities for the Strategic Management Group

As requested, we sent our three priorities, on 2015-05-01 :
Next steps for the SMG group

We would like to see a National Autistic Society with a positive attitude to diversity where all staff demonstrate understanding of autism and respect for autistic people. We suggest the following three actions, based on the discussion paper we circulated earlier, as initial steps to instigate this culture change. Although we were asked for priorities we would not characterise these as priorities but rather see them as first steps towards the single aim of transforming the NAS into a truly autism friendly organisation.

  1. Adopt inclusive and respectful language. As discussed at the meeting, this should aim to affect the way staff think about autism and autistics. We suggest immediate changes of language in all NAS communication, including the website, to remove “person first” terminology and editing of content where appropriate to reflect that autism is a difference that can include significant strengths (and not merely a “triad of impairments”). This process requires Brand accepting that the language about autism should be flexible. We would also like the NAS to publish prominently on the website a statement of support for the social model of disability.

  2. Face-to-face training given by experienced autistic trainers about the realities of life for autistic adults. The training should be interactive, allow for open and honest Q & A, cover the range of autistic experiences and reach people at all levels of the NAS, both in London and in the furthest regions.

  3. For the NAS to be proactive in employing and contracting autistics at all levels of the organisation, and offering them fair terms and a good working environment. This might begin with an audit of HR procedures and the environment at NAS workplaces and offices to assess and improve autism friendliness so that the NAS can lead by example. The NAS should refrain from using user-led projects to obtain grants that are then spent in projects where autistic participation and benefits are tokenistic.

We look forward to hearing from you.

Caroline Hearst, David Mery, Dinah Murray & Cos Michael

2015-05-22 The Strategic Management Group draft plan

We were sent the following document, on 2015-05-22, in preparation for our second meeting with the SMG :
Notes for meeting with autistic adults

Key areas you wanted us to look at :

Language review

Initial NAS response to the survey was published in “Your Autism” magazine.

Lizs [Pellicano] paper being published in “Autism” this month. Carol [Povey] and Lorcan [Kenny], (key author) will be discussing the research in a podcast early June. Lorcan presented the findings at the International autism research meeting (IMFAR) in May. The survey results will inform the way we use language in the many channels we use including our direct support services, media, events, family support, clinical services and web. This will take time, and we will be happy to share a plan and progress as it happens. Changes are starting immediately, and Carol has recently presented the findings to the training team, who will be starting to discuss language in all their training sessions.

We have already made some decisions, based on the survey. Our commitment is to refer to ‘autistic adults’ in all communications where the primary audience is ‘autistic adults’ or where we are specifically referring to autistic adults. Where we are speaking to families, particularly of young children, or professionals, we will bear in mind the context, and will use a range of phrases, including child with autism. We will continue to use Asperger syndrome, as well as autistic, and, where our communications are for a broad audience, will use “on the autism spectrum”, which was the preferred term for of all stakeholder groups. We will avoid using “low” or “high” functioning, which was felt to be over simplistic and unhelpful in describing the strengths, needs and challenges faced by autistic people.

Wherever possible, we will ask individuals how they want to be addressed, and respect those wishes.

The NAS as an employer

We want to develop a working environment and working practices which encourage autistic people to contribute to the organisation as valued employees. To do this we need to :

  • Ensure all staff have a good understanding of autism and good autism practice

  • Ensure the working environment in head office, regional offices and services meet the standards we expect of other

  • We pay autistic people for work / contributions that non autistic people do as part of paid work (whether that be with the NAS or other organisations)

Actions we will take include :

  • Supported employment service to lead (including others) a workplace assessment of the NAS and report back with recommendations. The review team will include autistic adults

  • Get an environmental assessment undertaken, with recommendations on City Road. Again, the team doing this will include autistic adults.

  • Hold regular workshops with autistic adults where staff can learn more about autism and good autism practice. These should be informal, participative and inclusive.

  • We consider establishing a small fund to which departments can apply to pay autistic people for work.

  • We will examine our HR processes, including JDs and information for applicants on our Job Spot. PwC recently invited an autistic adult to audit all of their HR processes from end to end – the feedback was incredibly positive and everyone felt the benefits of the recommendations. We will do a similar exercise.

The training department are presently training autistic adults as trainers and consultants. By the end of this year we aim to have 50% of training / consultancy delivery undertaken by autistic people either as co trainers or singly.

2015-06-09 Meeting with the Strategic Management Group

On 2015-06-09, Cos Michael and David Mery met a smaller group of members of the Strategic Management Group : Mark Lever (Chief Executive), Carol Povey (Director of the NAS Centre for Autism), Jane Harris (Director of External Affairs & Social Change) and Alastair Graham (Director of Fundraising & Marketing).

Some participants took some notes, but this meeting was not minuted. We express our concern that the head of HR was not present even though some of the discussion should focus on employment to which Mark Lever explained that the head of HR was away and anyway they can decide actions about employment without the head of HR present.

We repeatedly expressed our concerns, as per our priority paper, as none was really addressed. We both had to express our frustration on several occasions.

As Mark Lever said initially he wanted clear actions to come out of this meeting, we tried get the SMG members present to commit to specific actions, but they would only offer woolly and confusing answers. Our requests for the NAS to express what actions they intend to implement within what deadlines remained unanswered and Mark Lever eventually told us that he is accountable to the Trustees and not to us.

Even though we spent most of our two hours meeting on terminology, it proved impossible to get clarity as to which terminology the NAS will use. It will depend on the audience. What if the audience is mixed, we asked. There was no reply, except to reiterate that the preference of each person should be respected. They seemed unwilling to explain how this might work in practical terms.

We asked for the NAS to give guidance – to lead by example and to encourage professionals to respect the preferences of autistic people about how they define us, rather than to call us by what ever terminology they guess their audience prefers in any given situation . We pointed out that some professionals are autistic, as are some parents, etc. And that if the NAS is 'For' autistic people, it should respect our choices. We said that if everyone who is connected to an autistic individual uses different terminology, it will be confusing. And that if children are raised 'with autism' or 'on the spectrum' and adults tend to prefer being called 'autistic', it follows that there will come a point where most children will have to demand their preference to be called ‘autistic' is respected by their families and support network. So these NAS plans are setting them up for a fight when they get autonomy. We pointed out that the autistic individual should be in the centre of what the NAS, professionals, parents and teachers do, but the SMG members seemed unable to grasp that concept.

When we argued strongly against their plans about autism terminology, they referred us to their survey to justify decisions. We demonstrated where their argument was factually incorrect by quoting the survey results at which point we were told that 'what the survey says isn’t everything.' When we were quoting their IMFAR paper about the terminology survey : 'The term ‘autistic’ was endorsed by a large percentage of autistic adults (61%), family members/friends (54%) and parents (50%) but by considerably fewer professionals (38%). In contrast, ‘person with autism’ was endorsed by almost 50% of professionals but only by 26% and 22% of autistic adults and parents, respectively.', Carol Povey explained that this was cherry picking and that any further detailed discussion about terminology has to wait for publication of Autism Journal article. Several times, when we pointed out that over 50% autistic respondent didn’t want 'people first’ language, we were marginalised because the NAS isn’t just answerable to 'the demands of a small group'.

Suddenly Mark Lever said that they only wanted to talk about practical things. So we asked, when we get our copy of 'Your Autism', what terminology would be used? Will it be my autism? Will it use the terms I prefer? As they are proposing a mishmash, how will they decide what terms to use on the website or in publications aimed at a range of user groups? There was no discernable answer. We suspect they had not considered this, or if they have, we doubt we’d like the answer.

It seems that the preferences of other stakeholder groups trumps the wish to respect autistic people, unless autistic people are the only people in the room. If we are confused as children and have to fight our support network as adolescents and feel offended as adults, it’s a price we’ll have to pay because the NAS does not wish to commit to supporting us as we would wish.

Here are the few concrete commitment we managed to extract when giving specific examples of priorities :

About the lack of any mention of whether the NAS will publish a statement of support for the social model of disability and start focusing on strengths of autistic people, Carol Povey said that the NAS position is more nuanced, and that they are about actions not statements. Our understanding was they will not commit to publicly adopt the social model of disability.

We then went through the employment points they had set out, with the instruction to only discuss practical suggestions. So we did, and they cherry picked, rejecting some, accepting others. However, when we asked them for practical information, such as timelines, e.g., when they expect to complete their scoping, discussions, plans, etc. and actually do something, they got very huffy. The NAS it seems, does not adhere to the basics of project management.

We also pointed out that over the past seven months we had volunteered our time and effort in engaging with the NAS. In light of the commitment that 'We pay autistic people for work / contributions that non autistic people do aspart of paid work (whether that be with the NAS or other organisations)', we had expected that for this meeting which was called by Mark Lever we would be offered a consultancy fee (we were offered travel expenses). Mark Lever and Carol Povey were shocked by this suggestion saying that it was a meeting of peers, brushing aside that all our meetings were during working hours at or close to the NAS with all senior staff present being paid as part of their salaries for the time they spent meeting us. Caroline Hearst, who was invited to the meeting and works freelance as an autism trainer and consultant, felt it was unreasonable that only autistic 'peers' in this conversation were unpaid, and needs to earn a living so did not attend.

When querying the sentence 'We consider establishing a small fund to which departments can apply to pay autistic people for work.’ in the paper the SMG sent us before this meeting, we were told that it is not about paid autistic persons, it’s not about consultancy work, but this ‘small fund’ is for unemployed autistic people who would not normally be paid. Confused we asked for an example of who would fit this category to no avail. Both Carol Povey and Mark Lever appeared very embarrassed by the obvious discrimination. They said this sentence was a mistake and that if autistic people did the same work as neurotypical people, they would be paid in the same way. This avoided the issue of work autistic people are asked to do because they are autistic.

When we argued against other points they presented 'for discussion', we were told that decisions had already been made. Therefore, we assume we were invited in the expectation that we would agree with these and rubber-stamp them as 'approved by autistic people'. We have not approved, so they’ll have to amend it as 'after consultation with autistic people', as massaging the message seemed to be their first priority during this meeting.

As to the working environment in NAS offices we were promised it will change, but first they will do yet another consultation as the situation has changed since the last consultation (that was ignored).

When told that any change in language would take time as it would need to be communicated to all staff, Cos pointed out that it is easy to communicate to all NAS staff at short notice using internal magazine and communication systems such as The Loop and NAS net.

Mark Lever also committed to help autistic adults by creating a dedicated web space, without explaining how this space would differ from the existing ‘Information for adults with autism’ section of the website. Mark Lever also said we will consider our suggestion of having helpline operator(s) dedicated to autistic adults (there are currently eight help line operators with one of them having some relevant training and expertise).

We suggested the NAS to publish a (non-discriminatory) rate card for the different consultancy roles. Alastair Graham was in favour of clarity but refused to commit to transparency. (And it came to light that Cos had been paid for reviewing a training package when David hadn't.)

Mark Lever said that they are trying to convert out of the 350 people on zero hour those that do a permanent role on zero hour contract to a permanent position, but offered no clarity about those who do a non-permanent regular support work.

There’s no follow-up planned and Mark Lever concluded by asking ‘judge us by our actions’, but without any date as to when we should expect any change. We found this meeting extremely frustrating, After this seven months we had spent engaging with the NAS we feel our points have been ignored and we are bruised by this process.

Our conclusion? Nothing about us without us? No – nothing about us without us being told what’s what by the NAS, who know what’s best for us.

First published on 2015-08-20; last updated on 2015-09-12.

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Tue, 28 Jul 2015

‘Being Autistic’ – Calm, almost too calm

Ten years ago I was unlawfully arrested when attempting to take the tube after work. The police noticed that my behaviour was different, found it suspicious and decided I must be a terrorist. In the book Being Autistic – Nine adults share their journeys from discovery to acceptance I explore this difference:

Being Autistic cover

My understanding of how autism is an integral part of myself has been a long journey. I have always been different, eccentric, with very few friends. In primary school I was nicknamed ‘dictionary’ and in secondary school was bullied. I identified as a techie person and spent a lot of time with computers and online. Around 1998, when I was in my thirties, I read a review of the book Shadow Syndromes, which made me wonder whether I might be autistic.

The review picked among other things on the incapacity of one ‘patient’ to ‘clap in time to music’. This, in particular, resonated strongly with me. I can only clap in rhythm by visually syncing with another person’s clapping. I had never met or read of anyone with the same difficulty for what is apparently such a simple task. (It is ironic that this is not considered a characteristic autistic symptom.)

Reading more about autism and doing some online tests convinced me I was autistic and I self-diagnosed as having Asperger’s Syndrome. However coming from a medical family I was very aware of the unreliability of self-diagnoses generally and my family did not agree with this self-diagnosis. Tests, especially online ones, didn’t seem to be much more reliable. This resulted in believing that I was likely autistic, as many of my behaviours and past experiences matched some I had read about as being autistic, but not in the confidence to identify as autistic.

In 2013, in my late forties, I eventually sought a professional diagnosis. The reasons were two-fold.

Having previously worked as a software developer, a technologist and a journalist, I was unemployed, doing voluntary work and had decided to go back to university to do an MA. I thought a diagnosis could help me (as I eventually dropped out, this outcome was not fulfilled).

Also I had been wrongfully arrested. When I attempted to take the tube at Southwark station on 2005–07–28, police officers found my behaviour suspicious and decided to stop and search and subsequently arrest me as a potential terrorist. I thought a diagnosis would help if I was arrested again (this has not happened so far).

To get the diagnosis I went to my GP equipped with a printout of the information page for GPs from the National Autistic Society (NAS) and asked to be referred. My GP did not know anything about autism and asked me for a list of symptoms on one side of an A4 page and for a blood test. I attempted to explain that a blood test was irrelevant (and that I have an aversion to needles) but as I wanted the referral I went along with this request. (This GP also made some derogatory comments about my autism to my wife and we have both since changed surgery.)

In May 2013, a neuropsychologist eventually diagnosed that from information I had given him ‘there are features in social interaction and communication that, in the absence of other diagnoses, places you on the autistic spectrum – of the Asperger’s type.’

The validation from this diagnosis had the effect of enabling me to identify as autistic and to start to explore my autistic identity. Only after this professional diagnosis did I feel a sense of belonging, the confidence to join groups such as the Asperger London Area Group (ALAG) and to attend the Autscape conference; whereas before I felt I was not entitled to do so.

The diagnosis also helped me to reinterpret some traumatic experiences. It has made me realise that when police officers had found my behaviour suspicious, it was because of how they had interpreted some of my typical autistic behaviour, such as a lack of eye contact with them (i.e., I was ‘avoiding them’) and how I was dealing with the sensory-rich environment of the tube station. When I was made to wait in the entrance of the station before being led to a police van, some station’s alarms were ringing; I am hypersensitive to sound, but as my hands were still handcuffed I could not block my ears. When I was eventually processed, the custody sergeant found me ‘calm on arrival [at the police station], almost too calm’ and as a consequence I was ‘placed in a video cell on half hourly checks’. Again, my behaviour was found to be atypical.

During the police interview, some questions about my laptop, such as ‘has it got anything on there about plans for any terrorism act?’ and ‘has it got anything on there that might be construed as causing a public nuisance?’, particularly bothered me. The correct answers would have been ‘yes’ as I have a word processor, an email client, etc. that could all be useful to a terrorist and most likely can be construed to be of use for anything including causing a public nuisance, however, I realised that such answers would not have been been helpful to me and challenged the questions when the investigating officer just wanted answers.

Since the arrest I have become alcohol and fructose intolerant and I suspect this was a reaction to the stress. Policing in London and what happens to innocent individuals when they encounter the police became one of my special interests and I have researched, written and campaigned on civil and human rights issues such as the National DNA Database and the stop and search powers.

A year after my diagnosis, I publicly ‘outed’ myself and started some autism activism: I sent a contribution to a Home Affairs Committee inquiry into policing and mental health calling for police officers to realise that an atypical behaviour can be just different rather than suspicious; to consider hyper- and hypo-sensitivities that individuals may have; and to use clearer interviewing questions.

I am glad I sought out a diagnosis as it has been very helpful, but paradoxically this journey has helped me realise that for what is a neurodivergence, we should not need a medical validation. The medical pathway is not the best one, what we need is more legitimisation of self-diagnoses and acceptance of neurodiversity.

Being Autistic – Nine adults share their journeys from discovery to acceptance is published AutAngel, a community interest company. To find out more about the book and get your copy, visit AutAngel’s website.

Bootnote

Here are some related posts:

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Fri, 24 Jul 2015

Autistic behaviour considered suspicious

A year ago, I was interviewed for an Ask Autism e-learning module on policing made by the National Autistic Society. This module, aimed at an audience of police officers, has just been completed and published, and can now be purchased on the Autism and the police service web page. I made the point that police should consider atypical behaviours as just different and not suspicious; that they should take into account the hyper- or hypo-sensitivities that people might have, in particular to sound, light and touch; that they should ask clearer questions; and, that they should have better training. Here's as a my interview:

Bootnote

Here are some related posts:

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Wed, 22 Jul 2015

‘Being Autistic’ - terminology

I contributed two chapters to the recently published book Being Autistic – Nine adults share their journeys from discovery to acceptance. This book is aimed at adults having recently identified as autistic. To help readers reflect on the terminologies used by most autistics and most of those referring to us, and what are some of the implications of these choices, I wrote the following chapter:

Being Autistic cover

I am not a person with autism. I am an autistic person.

Receiving a diagnosis or identifying as autistic – can be very empowering and often entails talking and/or writing about autism. There are many words and expressions to choose from. You might have noticed that the contributors to this book express different preferences in their writing. To help you navigate your way through this terminology, here are a few of my choices and their implications.

You can choose whether to use identity-first (I am an autistic person) or person-first (I am a person with autism) language. As autism is an integral part of who we are – the way our brains and bodies work – many autistics are keen on the use of identity-first language and refer to themselves as ‘autistics’. I find person-first language (being called ‘a person with autism’) offensive as it implies that we should strive for a state when we are ‘without autism’. A useful way to think about this is that you would say a person with a cold, but not someone with Jewishness, or with left-handedness. Of course I also respect each individual’s choice of the language they use to refer to themselves.

This distinction is linked to how you consider our differences and how we fit in society. I know of two basic models. The medical model, the most common in our society, explains the difficulties we may have as caused by us not fitting in. To improve our lives, we must change (e.g., forcing ourselves to look others in the eyes, not stimming,1 etc.). The social model,which I and many other autistics prefer, considers that if someone has difficulties fitting in that is because there are barriers that should be removed; society must work to eliminate discrimination and accept us as we are in all our diversity. While the medical model finds autism to be a problem that must ideally be cured and suggests interventions, the social model promotes equality, respect and inclusion.

Autism Spectrum Disorder (ASD), on the spectrum, Asperger’s Syndrome or type, Aspie, high (HFA) and low functioning and classic autism, etc. – a great many terms are used to label us, but we tend to use fewer to express our identities. One reason for so many is to reflect the diversity of autistics. A common saying, attributed to Lorna Wing, is that once you’ve met one autistic, you’ve met one autistic. Several of these words classify us along a spectrum with abilities ranging from very poor (low-functioning autism and classic autism) to above average (high-functioning autism and Asperger). This neat continuum, however, does not match the more complex reality. Some autistics will find some tasks very easy some days and impossible to do at other times; individual profiles tend to be spiky and changeable. Although my diagnosis was ‘on the autistic spectrum – of the Asperger’s type’, I feel that it is more inclusive to identify simply as autistic and support everyone in this constellation of diagnoses and identities.

What about everyone else – the non-autistics? A word often used by autistics (and others) to describe most of those who are not is ‘neurotypical’ (i.e., have a typical brain), abbreviated as NT. The world is made up of neurodiverse individuals: people 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 are fully accepted with all our differences, a world I want to live in.

To explore some of these issues in more depth, here are a few good starting points:


1 ‘Stimming’ is self stimulatory behaviour such as hand flapping or spinning.

Being Autistic – Nine adults share their journeys from discovery to acceptance is published AutAngel, a community interest company. To find out more about the book and get your copy, visit AutAngel’s website.

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Thu, 18 Jun 2015

Celebrate neurodiversity

Some people do notice

Happy autistic pride day 2015

Being Autistic cover

Being Autistic, Nine adults share their journeys from discovery to acceptance is a book about to be published by AutAngel. You can pre-order your copy at a discount for a few more days.

I contributed one of the journeys and I am celebrating autistic pride day by reviewing what should be the final proof of the book

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Sat, 09 May 2015

Met Police and mental health trust of racist cover-up makes national news

When I sent in a freedom of information request, in October 2012, asking for the South London and Maudsley NHS Foundation Trust investigation report into an incident involving a massive police deployment that happened earlier that month at one of the Trust's mental health ward, I expected to receive the report within a few months. It took close to two and half years and involved sending a dozen of freedom of information requests to the Trust, the Metropolitan Police, the Independent Police Complaints Commission, Monitor and the Care Quality Commission as well as requesting many internal reviews and making several complaints to the Information Commissioner’s Office who issued two related decision notices.

Here’s a brief chronology of the reports I received from the Trust (the Metropolitan Police after many searches cannot find its own report):

The full report lists what the Trust and the Metropolitan Police have been covering up during all this time. My investigation has been written up in the Saturday 9 May editions of The Independent (pdf and below) and i (pdf). Note that, at the time of writing, the online version of The Independent's article is abruptly cut in the middle of the article (surprisingly where the text finishes on the first page of the article in the print edition, as if the online version was created from the printed paper).

The Independent p. 31 Campaigners accuse Met Police and mental health trust of racist cover-up

By Paul Gallagher, The Independent, Saturday 9 May 2015

A mental health trust and the Metropolitan Police have been accused of trying to cover up alleged racism towards patients during an extraordinary night when 48 officers – some in riot gear – were deployed to deal with disturbances in a ward of vulnerable adults.

Campaigners have spent three years trying to uncover what happened at the River House facility at Bethlem Royal Hospital, part of the South London and Maudsley NHS Foundation Trust, on 1 October 2012.

Several days of disturbances escalated into a riot, the ringleaders of which were four patients, three black and one white. They had placed staff under siege which required police intervention before control could be regained.

The Met sent in 48 officers, including armed and dog units. More than 20 officers entered the ward including several Tactical Support Group (TSG) officers in “strict, compact riot formation” armed with Tasers, shields, visors and batons.

An independent report into the disturbances commissioned by the trust said: “According to staff statements, the police, after entering the unit, ignored the request of staff to treat Patient C (a white patient) the same way as they had treated the three black patients.

“Staff state that the police made no attempt to coordinate their actions with [hospital] staff as is standard practice during a siege, to gain information and to help them plan their strategy in order to minimise disruption to the unit.”

Police, assisted by hospital staff, escorted the three black patients (Patients A, B and D) to solitary confinement, handcuffing two of them. Officers also placed a clear plastic cover over Patient B’s head preventing him from moving his head and shoulders. “He was initially ignored by police until several promptings by staff,” the trust report said.

Patient C, the only white patient of the four, was not handcuffed and allowed to stay in the television lounge despite staff insisting to police he was also “a significant player in the disturbance” and that being left on the ward could lead to another disturbance – which it did.

Immediately after police left, around 3am, another patient, E, demanded an explanation as to why Patient C had remained on the ward. The report said: “Patient E believed that there was a racial motive which led to staff assisting the police to place three black patients in supervised confinement, while a white patient was treated more favourably.”

Despite explanations, Patient E became increasingly agitated and hostile and threatened to kill staff and patient C. “This led to a second siege when staff lost control of the ward for a second time. Police assistance was required again before staff could regain control of the clinical area,” said the report.

Eleven officers returned and “dealt with the situation promptly”. By 5am full control was restored.

The Independent p. 32

A 111-page report was completed in May 2013 and a summary published that August. An “unreadable” version was only made public in May 2014 following Freedom of Information requests made by David Mery on behalf of the charity Black Mental Health UK. Almost all the allegations of racism and the patients’ ethnicity had been censored.

Mr Mery appealed and the trust was forced to publish the report again earlier this year detailing the accusations of racism as well as Scotland Yard’s refusal to engage with hospital staff. Around 30 pages remain completely redacted.

A paragraph initially redacted said: “It took eight weeks to secure material from the Metropolitan Police. Requests for further and better particulars have been unsuccessful, despite reminders on matters which were explored at interview with an inspector from Bromley borough police.”

Mental health campaigners say it was only luck that prevented staff or patients being injured that night.

The Met Police had previously been heavily criticised for their actions at the same hospital in September 2010. Then, Olaseni Lewis, a 23-year-old Kingston University postgraduate student, died after being forcibly restrained by up to 11 officers while seeking help as a voluntary patient. Five years on his family are still waiting to hear when an inquest into his death will be held.

Addressing the 2012 incident, Mr Mery told The Independent: “The cover up, with the trust releasing conflicting statements and deliberately attempting to avoid the release of its investigation report (and still refusing to name its authors), and the Metropolitan Police losing its own report, demonstrate that neither organisation is keen to take responsibility for what happen and ensure that it won’t happen again.

“Surprisingly, there doesn’t appear to have been a specific investigation into the racist behaviour described in the report. NHS trusts and police forces should have an obligation to publish reports into serious incidents publicly, promptly and in their entirety. However, the police have lost the incident management log for what they have classified as a critical incident.”

The police have said they were concerned that the staff on the ward that night were unaware of any contingency plan other than to call them on such an occasion. Operation Metallah, a new way of the Met to work with the mental health trust, was launched a few months later.

Mr Mery said: “The tactics that resulted in the deployment at a mental health unit of armed officers, dog units, and TSG officers with Tasers drawn are clearly wrong. Such tactics cause distress to the vulnerable individuals housed there. The apparently racist behaviour of TSG officers involved is unacceptable.

"It is lucky this time no one died or was seriously injured. Olaseni Lewis and Sean Rigg [whose death in police custody in Brixton, south London, in 2008 led to widespread campaigns on how officers treat suspects with mental health issues] were not so lucky.”

i p. 27

A trust spokeswoman said the report had been redacted on legal advice "for reasons of patient and public safety, and patient confidentiality… to maintain security arrangements used in a forensic mental health facility and to protect patient and public safety”.

She said: "The report published on the trust website provides a clear and independent account of what happened on 1 October 2012. The trust's intention was to publish the report in the interests of transparency while using the correct application of the FoI Act to ensure that the identity of patients and their security was not compromised.

"Following the investigation in 2013, the trust has taken action to address all recommendations made in the report to prevent a similar incident recurring.

A Met spokeswoman said: "The location is known to officers as housing high-risk mental health patients. There was a serious threat to staff safety, and some patients, whose medical history was not known to officers, were unsupervised and believed armed with furniture and access to a kitchen area containing knives.”

She said the response was based on "using the widest range of resources available during a highly charged incident by deploying resources appropriate to bring the situation under control, while ensuring the safety of staff and patients. The Metropolitan Police Service has received no complaint in relation to the incident. Should any complaint be received it would be thoroughly investigated."

She added that since the May 2013 publication of Lord Adebowale's report into how the Met responds to mental health incidents: "The MPS has fundamentally looked at how we work as an organisation, and with partner agencies, to improve services, share information and better understand the needs of people with mental ill health.”

The fudge report: Crucial details obscured

[NB xxxx represents details such as names mentioned in the copy but redacted in the ‘Final 10th May 2010 Report’]

‘Staff under siege’

Incident 1: escalated to a riot (as defined by BDP CAG – Major Incident Protocol and Procedures, February 2012), involved xxxxxxxxx who opportunistically placed staff under siege in the nursing station which required police intervention before nursing staff could regain control of the clinical environment. The antecedent to this incident stemmed from one patient, xxxxxxxxx. This incident resulted in damage to property but no physical injury to staff. Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx. The fourth patient, xxxxxxxxx, was initially left on the ward, despite concerns raised by staff that this could lead to further disturbance.

‘Increasingly agitated’

Incident 2: followed on almost immediately from the first incident, when xxxxxxxxx approached staff demanding an explanation as to why xxxxxxxxx had remained on the ward. Xxxxxxxxx believed that there was a racial motive xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx. Notwithstanding explanation from staff, xxxxxxxxx became increasingly agitated and hostile and threatened to kill staff and xxxxxxxxx. This led to a second siege when staff lost control of the ward for a second time. Police assistance was required again before staff could regain control of the 12 Independent Report – Norbury incidents, night of 1st October 2012 clinical area. This incident also resulted in damage to property. Xxxxxxxxx sustained minor injury to his hand. There were no physical injuries to staff.

‘Threatening and abusive’

Xxxxxxxxx had, by this time, calmed down considerably and although remained verbally threatening and abusive, obeyed police instruction, sitting on the floor with his arms above his head allowing the police to handcuff him. Xxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx. He was initially ignored by the police until several promptings by staff. He was escorted by xxxxxxxxx on Norbury Ward.

Bootnote

Here are my previous posts about this incident:

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Sun, 03 May 2015

Epic interview of the National Autistic Society’s Chief Executive

Autistic British journalist/author and advocate Lydia Andal has just published an epic interview of Mark Lever, Chief Executive of the National Autistic Society. It is a revealing interview. Mark Lever admits ‘I think we’ve got to get much better at communicating with, engaging with autistic people. And I know that sounds crackers – it’s the National Autistic Society, but I’m just being honest.’ You can start with a guide to the six parts.

The first instalment is about the Ask Autism training programme, created by autistics. In it, Lydia Andal questions Mark Lever about contributors to Ask Autism not having been paid and not having been given access to these modules. To provide a reality check to Mark Lever’s answers, this section includes a case study of my experience of being video recorded for one of the training module:

What Happened Next?

During the Interview: When asked if he will commit to sending the autistic contributors to the Ask Autism programme an access code – Mark says he will.

After the Interview: Mark did not deliver on this commitment.

Instead the NAS subsequently issued the following statement: “Everyone who developed the modules has been offered free access to Ask Autism.” (bold emphasis added).

This statement highlights that in contrast to Mark’s commitment in the interview – access continues to be restricted to the small number of people who actually developed the training materials – a policy which was already in place at the time I met Mark.

As such the rest of the autistic contributors continue to be barred from accessing the online training programme they helped to create.

During the Interview: Mark states several times that he is committed to ‘significantly reducing’ the price of the Ask Autism programme so that those most in need of the training tool – autistic people and their families – are not priced out of accessing it.

After the Interview: The following enquiry was sent “Can Mark confirm the new pricing policy for Ask Autism for members? There was talk of it being free or at a heavily discounted rate during our discussion.”

Five weeks later the NAS provided the following statement:

“Prices for the Ask Autism service can be downloaded from our website here: http://www.autism.org.uk/our-services/training-and-consultancy/ask-autism/online-modules.aspx

Members are able to claim a 20% discount for individual modules. There are on-going discussions about how the modules could be further discounted for members and others where price is a significant barrier to accessing them.”

The 20% member discount was already in place at the time of the interview and remains unchanged. At time of writing (six weeks after the interview) – the pricing policy remains unchanged.

This article will be updated if and when the NAS change their pricing policy – until then it could be considered that Mark has not delivered on his commitment to reduce the pricing of Ask Autism.

During the Interview: Mark states he wasn’t aware that some contributors had not been paid.

After the Interview: The following enquiry was sent “Can Mark confirm how many of the 70 contributors to the Ask Autism training modules have been paid.”

The NAS subsequently confirm the following “28 of the 74 contributors to the Ask Autism training modules were paid. Others contributed via Survey Monkey and so were not paid.”

The above NAS statement seeming to confirm that only those who contributed to Ask Autism via Survey Monkey have not been paid does not seem to be accurate as Ask Autism contributor David Mery explains below.

Ask Autism Contributor Case Study

“In August last year [2014] I was contracted as a ‘consultant’ to be filmed for an Ask Autism training module. As this module has still not yet been published, I will not mention its topic. It is an area where much training is required so I am very keen for this module to be completed and for it to be of a good standard. When I was initially contacted to be asked if I was interested in participating in this module, I was told that the Ask Autism budget was stretched and that the NAS could only pay expenses. I expressed my unhappiness about this, but this was not open for negotiation although it was suggested there may be some money for reviewing the module.

The impression I got was that the Ask Autism staff was not given a budget to pay contributors and did not have the power to get one. The contract I was sent offered only expenses. I did reluctantly accept it as I very much want training on this topic to be widely disseminated, but it was a difficult decision. An hour was scheduled on August 12th to do the filming. Two NAS staff and two videographers were present, probably paid.

After an initial editorial interest in the topic of the module, all the emails I received were about administrative issues. The most time spent was on negotiating usage permissions for the video for which I was asked to give away many rights that had little to do with Ask Autism and its promotion. As I was volunteering my time and expertise, I was not willing for the NAS to make more money outside of the sales of this Ask Autism module without any sharing. I wished the same amount of energy spent by NAS arguing this release form had been spent discussing the editorial content.

When in September I received a reminder to send in my travel expenses – which I had said I would waive as I had travelled to the filming by bus and on the way back by foot – I asked if this was an invitation to re-open the discussion about a fair payment for my time, and was told ‘In regards to payment for your time, unfortunately we are unable to do this as discussed before the interview and noted in your contract.’

I was not given access to any of the existing Ask Autism modules, which would have been useful to ensure consistency of style across the modules; I have been promised access to the module I contributed to when it is published.

In March I was eventually invited to a closed testing of the module and I discovered I was the only interviewee in this module. There were some serious editorial issues on which I provided feedback and I believe these are being worked on before the module is finalised, but communication has been limited. With some other autistics, I was promised in January, independently of my discussions with the Ask Autism team, that all the 70+ contributors to Ask Autism would be given access to all the modules; this has not yet happened and the only module I’ve seen so far was the one I was given five days to review.

I regularly volunteer for several other charitable projects and am very happy to do it for the good of the community. However when income is generated as part of the activity it should be shared fairly. For example, one of the charities I volunteer for also occasionally has paid events; for these the charity pays ‘volunteers’ a very reasonable one-off fee. As the Ask Autism training modules are a commercial offering of the NAS, even for its members, I would have expected some payment.

The NAS has in its vision a world where an autistic ‘lives with dignity and as independently as possible’, along with a mission to ‘involve, inform and empower people living with autism’. For the NAS not to pay fairly all its autistic contributors to reflect their expertise and the work they have done, to help them make a living and have an independent life is hypocritical as it goes against the NAS mission and vision.”

The sixth and last instalment touches upon the NAS position on the proposed autism marker on the Police National Computer:

Mark Lever: ’I know there’s talk about markers on some databases so that they can provide better support to people. […] I imagine [the information is] going to be self-disclosed, it would have to be self-disclosed I would think. I know there is talk in some systems about having autism flags so that they can better support people with autism but that would have to come from self-disclosure I would think.’

I wrote a detailed analysis about this proposed autism marker in the post Police marking of autistics.

It is well worth reading the full interview and what happened after, when Lydia Andal was checking information with the National Autistic Society’ PR team. In one of the changes to a quote by Mark Lever requested by the PR team (in part 5), they asked to remove

‘[W]e’ve never been a bio-med type charity […] people on the spectrum deserve to have all the support they can get to achieve their potential. That’s where we come from and that is no different to anybody else actually that they should have the right to get that support to achieve their potential.’

No similar statement or an endorsement of the social model of disability is available on the website of the National Autistic Society.

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Mon, 06 Apr 2015

What did the SLaM NHS Foundation Trust and the police cover up at River House

The South London and Maudsley NHS Foundation Trust (SLaM) has attempted to cover up what happened during two related incidents on a mental health ward. On the night of 2012–10–01, at its River House facility, 48 Metropolitan Police Service (MPS) officers were deployed, including officers from armed and dog units, and four Territorial Support Group (TSG) officers drew their Tasers on the mental health ward. The police cannot find its own investigation report. SLaM has eventually published a version of its investigation report with many fewer redactions remaining, in response to my multiple freedom of information requests and an eventual decision notice of the Information Commissioner’s Office.

You can now find out much of what they didn’t want you to know.

The mostly underacted 105-page report, released on 2015–02–25 is available here (in case this redacted report is updated or removed, a copy, as originally published, is available here). For comparison, the extensively redacted version, released on 2014–05–28, is available here (and a safe copy of it, here)

p. 29 of the 2014 version of the report p.29 of the 2015 version of the report

p. 29 in the 2014 and 2015 versions of the report.

What follows are excerpts from the SLaM investigation report which were blacked out in the earlier more extensively redacted release.

Apparently racist behaviour by TSG officers

‘Three patients (patients A, B, and D; all black) out of the four patients involved were placed in SC [Supervised Confinement]. The fourth patient, (patient C; a white patient), was initially left on the ward, despite concerns raised by staff that this could lead to further disturbance.’ p. 11 (first incident)

‘Incident 2: followed on almost immediately from the first incident, when patient E (a black patient) approached staff demanding an explanation as to why patient C had remained on the Ward. Patient E believed that there was a racial motive which led to staff assisting the police to place three black patients in supervised confinement, whilst a white patient was treated more favourably.’ p. 11 (Emphasis added)

’The UC confirmed that patients A, B, C, and D were involved and that prominent amongst these patients was patient C [a white patient].’ p. 24

’Patient B [a black patient], had by this time, calmed down considerably and although remained verbally threatening and abusive, obeyed police instruction, sitting on the floor with his arms above his head allowing the police to handcuff him. The police placed a clear plastic cover over his head to prevent him from moving his shoulders and elbows. He was initially ignored by the police until several promptings by staff. He was escorted by the first on-call CAG [Clinical Academic Group] manager and the police to SC on Norbury Ward.

Patient C [a white patient] was left sitting in the day area, as if he had played no part in the riot, despite all earlier insistence from staff that he had been a significant player in the disturbance. He was not handcuffed, as patients B and D had been and he was not taken off the ward. He was allowed to continue to remain in the TV lounge.

Patient A was considered by staff to be a behind-the-scenes orchestrator and manipulator.

According to staff statements, the police, after entering the unit, ignored the request of staff to treat patient C (a white patient) the same way as they had treated the other three black patients.’ p. 29 (Emphasis added)

‘Just before the police finally retired staff complained again about patient C [a white patient] remaining on Spring Ward. Therefore, a decision was taken to nurse patient C in the ICA on Spring Ward and to offer him prn medication. Two staff were were deployed on 2:1 observations with this patient.’ p. 30

‘These patients asked staff why one of the main activists [sic] (patient C) in the earlier incident, was left on the unit, while three other patients (all black) had been handcuffed and taken off the unit, accusing them of being racist for transferring three black patients into SC and leaving the white patient on the ward. Patient E (a black patient) approached staff around the nursing station demanding an explanation as to why patient C remained on the ward. Notwithstanding explanation from staff, patient E believed there to be a racist motive in the way black patients had been treated, accusing staff of assisting the police.’ p. 31 (Emphasis added)

Massive police presence causing distress to vulnerable patients not involved in the disturbance

’At 2347 the incident was considered by xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx to be “otherwise so dangerous” that Trojan (armed police officers), Dog Units and London Ambulance Service (LAS) were requested.’ p.23

’At 0052 there were in excess of 20 police officers on site; some in standard police uniform and others in tactical wear, carrying Tasers, shields and batons.’ p. 24 (Emphasis added)

’On arrival of Trojan [armed police officers] (unspecified in the police log), tactical advice was given, as per standard practice, with regard to use of fire arms. However, Trojan was stood down, as was the Bromley Borough Response team, as TSG [Territorial Support Group] would take the lead in entering Spring Ward.’ p. 27

’TSG entered Spring Ward from the fire road entrance via the airlock leading to the ICA and to the main ward in “strict compact riot formation (regimented crowd control)” armed with shields, visors, batons and Taser guns. Taser guns were not used.

Comment: According to some statements, patients who were already asleep and who were in no way connected to the disturbance were forced to leave their bedrooms by police officers, even though staff kept signalling to the officers that the real culprits were in the corridor and in the TV lounge.’ p. 28 (Emphasis added)

Comment: Most patients played no part in the riot. Nevertheless they were forced to leave their rooms (with the exception of patient F who was SC) as part of the tactical intervention made by the TSG. Some patients subsequently reported their sense of distress to xxxxxxxxxxxxxxxxxxxxxxxx but there is nothing recorded in the notes to this effect, even though there were potential safeguarding issues at stake. Attempts to secure further and better particulars about the methods used by the TSG have been unsuccessful.’ pp. 28–29 (Emphasis added)

Communication between SLaM and Bromley Borough Police lost in translation

‘It took eight weeks to secure material from the Metropolitan Police. Requests for further and better particulars have been unsuccessful, despite several reminders on matters which were explored at interview with an Inspector from Bromley Borough Police.’ p. 15

‘Although, according to some evidence, an agreement had been reached with Bromley Police Station that there would be police presence at the point of patient F’s transfer. When this was requested on 29/09/12, it was not forthcoming.’ p. 15

’At 2317 a third call was made to request ‘riot police support’ - CAD 9864. This was recorded on the police log as three patients had started rioting in the first instance and that all thirteen (patients) had now joined in; that suspects had metal poles and were trying to break the windows where the staff had retreated for security and that if the patients broke the windows, the staff would all be killed because patients had committed murder before.

Comment: This account is inaccurate, either because of what the police were told or because it was misconstrued in the translation. Most of the patients were sleeping or at least in their own bedrooms. There were no metal poles involved, although three patients were continually throwing a large metal bin with force at the window of the nursing station.’ p. 22 (Emphasis added.)

‘When the police declared incident 1 to be a Critical Incident’ p. 80

SLaM’s staff attempts to conceal intramuscular injection from patients

’A decision was taken to prepare oral prn midazolam 10mg as well as to draw up 7.5mg of midazolam for intramuscular injection. This was because the team determined there be to be a likelihood of patient D refusing oral medication. This was based on previous knowledge of him.

Comment: Preparing intramuscular medication at the same time as oral medication falls outside the ideal standard of practice. Whilst the Trust policy does not give guidance on this matter, NMC guidance (Standard 14: Standards for medicines management (NMC 2007)) is clear. However, under the circumstances and on balance, the Independent Team acknowledge that the specific situation required a degree of flexibility and staff initiative. The Independent Team accept that in some circumstances both oral and injectable medicines can be prepared simultaneously but that the injectable form of the medicine should then be stored in a readily accessible place and not handled in front of the patient at the same time that the oral medication is handled.’ p. 17 (Emphasis added)

’patient B smashed the oral medication out of the hand of the UC, spilling all the medication and water on the floor, along with the intramuscular medication, which according to some statements was concealed out of sight when it had been taken as a contingency measure, should patient D refuse oral medication.

Patient B accused the staff of bullying patients.’ p. 18 (Emphasis added)

‘The HCA [Healthcare Assistant] told the Independent team that as the ‘triggers’ associated with incident 1 were known to staff, that arguably, it was possible to foresee what would happen, once a decision was taken to offer patient D prn medication and how patient B would react to this. Patient B is known to object to the use of medication and tends to act as an intermediary between a patient and a staff member, often to try to ‘whip’ the situation up. In the opinion of the HCA, the situation could have been pre-empted and the police should not have been called.’ p.19 (Emphasis added)

SLaM staff appears to have been confused, lost control of the situation and retreated to the nursing station abandoning some vulnerable patients

‘The UC [Unit Coordinator] advised some staff to withdraw and to assemble in the nursing station for safety, as the situation was getting out of hand.’ p. 18

‘staff retreated to the nursing station’ p.19

‘Patient F remained unsupervised in SC [Supervised Confinement] once staff in the ICA [Intensive Care Area] and the nursing station had been evacuated from the ward. The first on-call CAG manager (a Registered Nurse) saw patient F on two brief occasions, with a police escort, to establish that he was breathing and not in too much distress.’ p. 28 (Emphasis added)

‘According to a statement from an Inspector from the Metropolitan Police, numerous requests were made to ascertain the names of those involved and risk assessment details, but there were no staff on duty able to provide such information, with no contingency plan, other than calling the police for dealing with such a disturbance. There was discrepancy between this statement and the evidence given by the UC.’ p. 21 (Emphasis added)

‘The UC and three other staff retreated to the nursing station to summon help.’ p. 31

’Comment: Given the severity of the situation the presence of an RC [Responsible Clinician] would have been appropriate. There was no senior medical presence for either incident 1 or 2.’ p. 33

Eight patients, including patient I, deemed very vulnerable, were left without access to any staff or care.’ p. 34 (Emphasis added)

Operation Metallah

‘Operation Metallah, a joint BRH/RH - Bromley Metropolitan Police protocol, with an operational implementation date of 20/04/13 – document received.’ p. 84

‘Operation Metallah, undertaken with the Bromley Metropolitan Police, in recognition that a new way of working was required to ensure optimal coordination and management of resources and sharing of information when police assistance is required, whilst not directly commissioned as a result of events on the night of 1st October 2012, has been influenced by it.’ p. 85

‘Operation Metallah - Joint Trust/Bromley Metropolitan Police protocol for responding to requests for police assistance at BRH, April 2013’ p. 104

The definition of the following terms in ‘Appendix 4 – Acronyms, abbreviations and terms’ had been redacted

‘Operation Metallah - Joint Trust/Bromley Metropolitan Police protocol for responding to requests for police assistance at BRH, April 2013’ p. 104

‘SC - Supervised confinement (seclusion)’ p. 105

‘Trojan - Metropolitan Police Firearms Unit’ p. 105

‘TSG - Tactical Support Group (Metropolitan Police)’ p. 105

p. 41 of the 2015 version of the report It would have been useful to get the Metropolitan Police Service (MPS) version of their intervention at River House that night, especially as from SLaM’s investigation report it would appear some TSG officers behaved in a racist way and caused undue distress to several vulnerable patients. An internal MPS email explains that ‘I have been informed that on [sic] Incident Management Log was created however despite searches on [Bromley] borough and with the senior investigating officer I have not been able to locate this document. Furthermore one document refers to a meeting in which this matter was to be discussed , again no further information could be found in respect of this meeting which may or may not have occurred.’ Following a complaint about the loss of this important document, the investigation log at an incident declared to be critical, the Information Commissioner’s Office wrote that ‘I have been advised by the MPS that searches for the log, which would be in hard copy rather than electronic, have failed to locate anything. Senior Officers connected to the event have been contacted but to no avail. The MPS have stated to me: “Unfortunately, in this instance the log in question cannot be located and is therefore, on the balance of probability not held”.’

So far, it has taken eleven freedom of information requests (to SLaM, the MPS, the Independent Police Complaint Commission, the Care Quality Commission and to Monitor), too many complaints to the Information Commissioner’s Office and a decision notice to uncover what has just been exposed that the South London and Maudsley NHS Foundation Trust and the police didn’t want us to know.

Some of these revelations are shocking.

There are still some redactions, which are likely unwarranted and, if so, in breach of the the decision notice of the Information Commissioner’s Office. The only valid exemption, agreed by the Information Commissioner’s Office, is for third party personal data which explains that most names are still redacted. It is more difficult to understand how the use of this exemption can be justified to miss pp. 39–67 from the table of content (on p. 2), and that from the middle of p. 40 to the middle of p. 65 the content is still entirely blacked out. From the headings just before and after these redactions, the redacted text must concern some of the findings of the investigation.

[Update 2015-04-24] The Information Commissioner’s Office has now compared the redactions made by SLaM with the steps prescribed in the decision notice and concludes:

‘From my analysis of the redacted and unredacted versions of the report, I am satisfied that SLAM has generally acted in accordance with the Commissioner’s instructions and therefore complied with the decision notice. This finding also applies to SLAM’s decision to withhold pages 40 – 65 in their entirety.’

Bootnote

Here are my previous posts about this incident:

And also some of the internal SLaM correspondence and internal MPS correspondence about my earlier FoI requests.

First published on 2015-04-06; last updated on 2015-06-24 to add details about compliance of remaining redactions.

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Mon, 30 Mar 2015

Surveillance in Trafalgar Square and the UK

Deutsche Welle filming crew German broadcaster Deutsche Welle was filming earlier this month a segment in Trafalgar Square for its series Focus on Europe - Spotlight on People.

The topic was how pervasive video surveillance is in the UK and the opposition to it by organisations such as No CCTV:

No other European country keeps as close a watch on its citizens as the UK. For years, the government has been broadening its powers of surveillance in the name of security. In other nations, its laws would long since have been considered breaches of privacy. Now opposition has also been growing in Britain.

I was interviewed for it and briefly appear 3’10" in the short programme.

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Sun, 22 Feb 2015

Police marking of autistics

A parliamentary written answer about creating an autism marker on the Police National Computer (PNC) was recently answered:

Lord Touhig (Labour)
To ask Her Majesty’s Government what progress has been made in considering whether police marker systems used to identify those with mental health and learning difficulties can be extended to those with autism as proposed in the report Think Autism.

Lord Bates (Conservative)
Work is continuing to establish whether a separate marker, specifically for autism, can readily be added to the Police National Computer in addition to the existing mental health marker, and to assess potential impacts on police force IT systems.

A follow-up written answer clarified the implementation plan:

Lord Touhig (Labour)
To ask Her Majesty’s Government, further to the Written Answer by Lord Bates on 5 February (HL4542), whether there is a deadline for completing work to establish whether a separate marker, specifically for autism, can be added to the Police National Computer […], whether the current police information technology systems are capable of accommodating an additional marker, specifically for autism, to be added to the Police National Computer.

Lord Bates (Conservative)
For the purposes of speed of implementation it is proposed to use an existing marker to encompass cases of autism rather than developing a specific marker, which would require further significant work and assessment. These proposals are expected to be considered by the Police National Computer Board within the next month.

The National Autistic Society’s (NAS) Policy & Parliamentary team provided a note titled Further information on Government proposals to establish a marker for autism on the Police National Computer. I am copying its content below and interspersing with some comments:

What is proposed?

A Police National Computer (PNC) record is created for anyone who is charged with an offence or receives a fixed penalty notice, community-based service, or caution. This may be for first time or continued offending.

This is incorrect. ‘The PNC holds details of people who are, or were, of interest to UK law enforcement agencies’. A PNC record is created at arrest and is retained until the individual becomes 100 year-old (if there are several dates of birth on record, the first one is used). See Notes on the Police National Computer for more details on the PNC.

Current Government proposals are to include a marker on these records that alerts criminal justice workers to a person’s autism. The Government’s proposal is to record autism within the “AT” marker, rather than to take longer creating a new marker: The AT marker signifies ‘Ailment’ and will remain on the record for the life of the specific record (e.g. being acquitted or the record being expunged). There is room for 60 text characters (max) to accompany the marker, e.g. “has autism, needs support”.

The NAS persists in its use of the offensive person first terminology (‘has autism’). Autism is an integral part of who we are and how we experience the world. Identity-first language should be preferred (’is autistic). Someone does not have Englishness or jewishness or left handedness, or autism, etc. One is English or jewish or left handed or autistic. This page has a good explanation of this semantical issue.

The NAS recognises that the use of the phrase “Ailment” is unfortunate. However, this will mean that information about someone’s autism can be recorded more quickly. It is important that criminal justice professionals receive training so that they can interpret this marker, know about the nature of autism and make suitable adjustments. To this end, the NAS is working with the Cross-Government group on autism and the criminal justice sector to develop training resources for professionals.

The NAS also believes that, while the recording of autism under the AT marker will provide a quick solution in the short term, the relevant authorities should continue to look to create a separate, more appropriate, marker that could record autism (and potentially other non-medical or non-mental-health conditions).

Even though the NAS finds the current proposal ‘unfortunate’ and short term, its policy advocates for the creation of a ‘marker that could record autism’ (and potentially other neurodivergences).

This is very concerning, as it is advocating for what will effectively be a database of autistics for policing purposes. That the records have to already exist to add such a marker is not as much a safety as it may look; one only has to remember the claims that Police ‘have made arrests just to get people on to the DNA database’. Such a database would criminalise and stigmatise autistics. Being autistic is not criminogenic; if anything it may increase the risk of being victim of crime.

Also there are many autistics who have not yet realised they are autistics. Would this marker apply solely to autistics having followed the medical pathway and been medically diagnosed? If the criminal justice system (CJS) became over reliant on such a marker, it would create the additional risk that the many autistics not having the marker would not be dealt with adequately.

Another unaddressed issue is what criteria would be used to decide to set such a marker for an individual? Does this imply that autistics would be forced to disclose their autism? Whether and when to disclose is an an individual right. This right to choose cannot be so lightly ignored.

What could be useful to record in a database accessible to emergency call handlers is communication needs, e.g., whether some one uses BSL as first language, is unable to make voice calls, may need an independent advocate, etc. That would still be useful only for those on this database so is a very limited solution.

What does this mean for a person with autism?

For most people with autism, this will have no effect at all as it only adds a marker to existing PNC record (i.e. there must have been a caution, charge or sanction).

If it will have no effect for most autistics, then what is the point of advocating for such a marker? What is the point of creating an ineffective, criminalising and stigmatising marker, albeit on a pre-existing PNC record? There are better solutions to improve the actions of those in the criminal justice system towards all autistics.

This PNC project is designed to make it easier for the police to know if a person has been diagnosed with autism so that they know they may need to make changes to their usual practices and make sure they are explaining what is happening so that it is understood. We believe that, on the whole, this could be useful for police and may help a number of interactions between people with autism and the police from escalating.

The NAS has heard of situations where, for example a confrontation between police and a person with autism has escalated because of the shouting of confusing/mixed instructions. While the marker will be limited to people who already have a PNC record, one possible virtue of the marker is that police would be alerted to a person’s autism and know to approach an arrest differently. This cannot replace appropriate training of criminal justice professionals, but would be intended to help those with training identify appropriate responses much more quickly

Good training is indeed essential. Some researchers, police officers and the Home Affairs Committee also agree. Police need to understand that atypical behaviour is just a different behaviour and not a sign of criminality. Some of the reasons given by the police for finding my behaviour suspicious and wrongfully arresting me were that I had avoided eye contact with them (a failure to interpret social cues appropriately) and was wearing a jacket allegedly too warm for the season, both of which are common autistic behaviours.

Training for the police and others in the criminal justice system on common autistic behaviours and sensory issues would be particularly helpful.

How can this information be used?

Given the sensitive nature of the information, it is vital that it is not used improperly – especially to stigmatise people with autism or to fuel misconceptions about them. We have asked criminal justice representatives how the proposal means the information within the marker will be used. This section summarises their response.

This is nice wishful thinking, but there are examples of the PNC, including information of a sensitive nature such as DNA profiles and photographs, used improperly. For an innocent to become an honorary criminal by being on a police database is stigmatising. If there’s an autism marker, it would be surprising for it to never be used improperly.

In data protection terms this information is classed as sensitive personal data so permission of the individual concerned should always be sought by any non-police agency seeking inclusion of relevant marker on PNC.

Police does not seek consent for inclusion of information on the PNC. If the information is to remain under the control of autistics, then a much simpler mechanism is to carry a card briefly explaining that one is autistics and possibly including some basic interaction advice. If one cannot talk to explain they are autistic, they may show their card, and if handcuffed, the police will find the card when searching the individual. The police must treat all who have special needs appropriately whether these are expressed verbally or with a card. And an autism alert card can be used in other settings as well.

As regards to data protection, databases have incorrect information, information can leak (or become lost on a train) and databases can be used for surveillance. Not entering additional information, especially in a police database, avoids all these issues. (After the police decided to take no further action in my case, they forgot to update the PNC accordingly for many months, in breach of the Data Protection Act. This is not a theoretical issue.)

The marker would be present for protective purposes. Suggested examples of (policing) decisions which it would usefully influence:

The NAS’ position

The NAS believes that the central issue for improving experiences of the criminal justice sector for people with autism is ensuring that all professionals have a good knowledge of autism and the changes that they need to make to practices and environments. We are currently working with the College of Policing to improve training for new police recruits and pushing for more training for other professionals.

Improving training is a positive step. Awareness is essential, but not sufficient. Acceptance of neurodivergences is what is needed.

In order to ensure that the right changes can be made, it is vital that the police, or other criminal justice sector professionals, know that someone has autism as soon as possible. There are a number of ways that this can be achieved: e.g. autism alert cards, encouraging people to declare their autism without fear of prejudice, improving training so professionals can identify the signs. A marker on the PNC is one other way that this could happen.

We believe that there are important safeguards that must be included, to ensure that sensitive data is used appropriately. Professionals must be sufficiently knowledgeable about autism to know that having autism is not an indicator of criminality or guilt. The marker should only be used in ways that will allow a person with autism the same protection of the law and access to justice as any person.

It is discriminatory and wrong for the police to keep markers which have nothing to do with criminality on categories of individuals for most of their lives. Police keeping tab on innocent inviduals is typical of a police state, not of a liberal democracy. Having an autism marker on the PNC will criminalise autistics. As was expressed in the European Court of Human Rights judgment in S. and Marper v. the UK: ‘Weighty reasons would have to be put forward by the Government before the Court could regard as justified such a difference in treatment of the applicants’ private data compared to that of other unconvicted people.’

By focusing on a marker identifying autistics, this discriminatory approach, rather than addressing the root causes of how traumatic encounters with the criminal justice system too often are for autistics, further legitimises the current societal attitude of blaming autistics for their poor treatment.

A much better solution to the problem this tries to address is two-fold: training of those in the criminal justice system and autism card schemes. Voluntarily carrying a card can help an autistic encountering the police to clarify that some of their behaviour may be atypical. A card is fully under the control of the individual. It is a helpful communication tool, not an ID card or get out of jail free card. And such cards can be used in other situation where communication may be difficult.

The police must serve all of society with respect and humanity. Autistics deserve equal treatment and the forced disclosure of our neurology to ensure ‘equality’ cannot be a requirement. The police need to be aware and more accepting of all neurodivergences, including of autism. An increased acceptance that many experience the world differently, would be of benefit to more than just autistics.

Hopefully the NAS will fully consider the many problems and risks of such a marker, review its policy and use its influence to help stop this proposal going any further.

This post was written in collaboration with Kabie Brook, chairperson of the Autism Rights Group Highland (ARGH). ARGH has designed an autism alert card available to all autistic people, children or adults, across the UK and carried by several hundreds autistics.

Bootnote:

Some other recent parliamentary debates and written answers about autism:

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Wed, 18 Feb 2015

Throwaway society

The Discovery programme on BBC World service broadcast an episode on the throwaway society on 2015-02-16:

Hundreds of millions of computers, mobile phones and televisions are thrown away every year around the world. In this week’s Discovery Gaia Vince will be looking at the reasons behind this rapidly growing mountain of electronic waste and asking, who is responsible? The manufacturers or the consumers? When our gadgets break, maybe we should just be repairing them. And Gaia attends a party where people are fixing stuff for themselves.

The half hour programme can be listened to on the BBC Radio Player.

Some of the interviews were recorded at a Hackney Restart Party. My interview starts at 19:21.

Bootnote: Other blog posts about The Restart Project:

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Thu, 29 Jan 2015

NHS Trust forced to publish unredacted full report about massive police deployment to mental health ward

For the past two years I have been attempting to uncover what happened during two critical incidents that occurred at the River House facility operated by the South London and Maudsley (SLaM) NHS Foundation Trust on 2012-10-01. I eventually exposed that 48 Metropolitan Police Service (MPS) officers were deployed and that four TSG officers drew their Tasers on the mental health ward.

Using the Freedom of Information Act, I got SLaM to initially publish a redacted summary report and then to unredact it, fully. This revealed it was hiding a full report. Using that information, I got it to publish an extensively redacted version of the full report. After an internal review in which SLaM found it was justified to do all these redactions on health and safety, and third party personal data, last week, the Information Commissioner's Office (ICO) disagreed and decided against SLaM:

South London and Maudsley NHS Foundation Trust

21 January 2015, Health (NHS)

The complainant has requested a copy of an investigation report that was commissioned to investigate an incident that occurred on a ward at the South London and Maudsley NHS Foundation Trust (the Trust) in late 2012. The Trust initially relied on the future publication exemption (section 22) in FOIA to withhold a version of the report. Upon its publication, parts of the report were withheld under the health and safety (section 38) and third party personal data (section 40(2)) exemptions in FOIA, although these were later released to the complainant. However, during the course of the Commissioner’s investigation it became apparent that the Trust had only considered a summary of the report rather than a version containing the complete findings. A further partial disclosure of the complete report was made with the remaining information withheld under sections 38(1)(b) and 40(2) of FOIA. The Commissioner has found that section 40(2) but not section 38(1)(b) of FOIA is engaged. He therefore requires the disclosure of the information to which section 38(1)(b) has been applied. The public authority must take these steps within 35 calendar days of the date of this decision notice. Failure to comply may result in the Commissioner making written certification of this fact to the High Court pursuant to section 54 of the Act and may be dealt with as a contempt of court. [Emphasis added]

FOI 38: Upheld   FOI 40: Partly upheld

Decision notice FS50514652

Here are my previous posts about this incident:

SLaM has to publish an unredacted version of its full report that complies with the ICO's decision by 2015-03-25.

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Mon, 19 Jan 2015

Privacy campaigners vindicated in fight to delete DNA profiles of innocents

The Protection of Freedom Act 2012 introduced more restrictive rules about the retention of DNA profiles of individuals on the National DNA Database (NDNAD) including the deletion of the DNA profiles of most individuals who are not charged (No Further Action) or acquitted. This was a change welcomed by activists who had been campaigning that keeping tabs on innocents should not happen in a liberal democracy and that it does not make policing more efficient (adding hay to the hay stack makes finding the needles harder). What would have increased the crime detection rate would have been to fund for more DNA profiles from crime scenes to be added.

As of 31 March 2014, the National DNA Database held 5,716,085 DNA profiles from individuals down from 6,737,973 a year earlier, and 456,856 DNA profiles from crime scenes up from 428,634 a year earlier. In 2013-14, 1,384,905 DNA profiles from individuals were deleted from the database. Of these, 1,352,356 of these were deleted under the provisions of PoFA; 31,690 profiles taken by Scottish forces were deleted under Scottish law. A further 6,837 crime scene profiles were deleted because the crimes had been solved.

I wrote nearly three years ago:

It is a success for all the privacy activists and victims who campaigned to restore the presumption of innocence and the rehabilitation of offenders having been convicted of a minor crime. GeneWatch UK –as an indefatigable organisation at the forefront of the campaign to change the law to make the National DNA Database much smaller and more carefully controlled, and to safeguard privacy and rights without compromising the use of DNA in fighting crime– deserves much credit in this success.

Last month the government eventually agreed with what we had said all along. Lord Bates, Lords Minister and Minister for Criminal Information, Home Office in his ministerial foreword to the National DNA Database: annual report, 2013 to 2014 recognised that:

The reduction in profiles held from innocent people has not led to any reduction in the number of matches the database produces. In the quarter from 1 April to 30 June 2014, the database produced 37 matches to murder, 127 to rapes and 6,111 to other crime scenes. In the same quarter of 2013, when the old system for retaining DNA was in effect, it produced 37 matches to murder, 103 to rapes and 6,141 to other crime scenes.
[Emphasis added.]

Chris Sims, Chair, National DNA Database Strategy Board Chief Constable, West Midlands added:

The NDNAD match rate on loading a crime scene profile reached 61.9% in 2013–14. This was the highest annual rate yet and shows the success of the NDNAD in detecting crime and protecting the public.

The NDNAD Strategy Board showed some surprise at this outcome at its September 2014 meeting, but could not find any error in the draft annual report!

4.6 MC presented a draft of the National DNA Database Strategy Board’s Annual Report for 2013–14 (Paper 4.1) to the Board. He thanked Carl Jennings for his hard work on the report. He said that this was the first report since the implementation of PoFA. The proportion of profiles from innocent people had fallen from 50% to 3%. He reported that the number of profiles on the database had fallen from 7.2 million to five million but that the match rate had had in fact risen slightly from 59% to 62%. He had checked this with KF and they could not find any errors with the figures. JA said that the increase in match rate was not expected; in fact, a decrease had been anticipated. She asked if the number of crime scene profiles had reduced. MC said that the report would be published as soon as the Board were content. CS added that it was good that we were near publication.

4.7 CS asked if we had got the chronology on the deletion of samples correct and MC confirmed that we had. Batches of deletions took place in fairly short timescales (for example over a weekend). CS said that we needed a proper review of PoFA implementation and MC added that any analysis of implementation must be independent and not carried out by the police or the Home Office. CH added that such a review would need ministers’ co-operation as well as funding and an appropriate experimental design. AP said that the scientific design committee could input into any such review.
[Emphasis added.]

Blanket and indiscriminate surveillance is not the solution. It is neither necessary nor appropriate.

Bootnote:

Retention periods for DNA profiles and fingerprints (as presented in the annual report).

1. Non-convictions:

Occurrence Fingerprint and DNA Profile Retention
Minor offence – arrested or charged None – but speculatively searched
Qualifying offence* – arrested not charged None, but in exceptional cases on application to the Biometrics Commissioner, three years retention may be authorised, plus two year extension by court
Qualifying offence* – arrested and charged Three years plus possible two year extension by court
Minor offence – Penalty Notice for Disorder Two years

2. Convictions (include cautions, reprimands and final warnings):

Occurrence Fingerprint and DNA Profile Retention
Under 18 – Convicted of a minor offence First conviction: five years (plus length of any custodial sentence), or indefinite if the custodial sentence is five years or more.
Under 18 – Second conviction Indefinite
Under 18 – Convicted of a qualifying offence* Indefinite
Adult – Convicted of an offence Indefinite

*Qualifying offences are serious violent or sexual, terrorism and burglary offences.

Where an individual has more than one arrest on their record, the longest retention period will be applied.

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Thu, 01 Jan 2015

Blog posts in 2014

2014 posts (created with Wordle)

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