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


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


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


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 :

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?



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 :

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.


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.


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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