This final part of the interview with Mark Lever, Chief Executive of the National Autistic Society encompasses the following topics:
- Mark’s appointment to the role of Chief Executive
- The Lack of Senior Level Employees within the NAS
- The NAS position on a ‘Police Marker’ for Autism
- Autism Awareness Training within the NAS
- Is the NAS a Charity or a Charitable Business?
This interview was an in-depth and wide-ranging one and the various topics covered will be featured across six parts between 27th April – 2nd May 2015. Please click here to read the Introduction to this interview if you haven’t already.
The Recruitment Process around Mark’s appointment to the role
“I don’t pretend to have expertise in autism”
This part of the interview explores how Mark came to be appointed as Chief Executive of the NAS.
Note: The below part of the interview has been published verbatim with minimal editing.
Lydia: “Is it true that you were headhunted for the role of Chief Executive and that you told the recruiter that you had no prior experience of autism and they said that you were ‘perfect’ for the role?”
Mark: “That’s almost the language that was used. They were looking for somebody that could come into the charity with a completely fresh pair of eyes because they felt that it needed to be more outward facing, it needed to…take on board the views of people with autism much more and it needed to be more collaborative as well as a charity.
So I think that’s paraphrased but certainly I’ve told the story that the headhunter said to me “what do you know about the NAS?” and I said “Absolutely nothing” because I didn’t at the time. [The headhunter then asked] “what do you know about autism?” and I said “not very much” and he said “we might have just the job for you”.
Now that was probably…that was the conversation but I’m saying that was probably tongue in cheek, but obviously through the recruitment process that was explored and my own feeling was that actually ‘I don’t know anything about autism or the world of autism at all’ so in that period I read up quite a lot and I think what struck me was the lack of fairness in the system for people with autism and the lack of fairness in the system for families and I felt that actually I would really like to be – fairness is a core value of mine that I’ve discovered over the years – and I felt that a charity that has…because obviously people in the charity have expertise in autism, and I don’t pretend to have expertise in autism now certainly even after being here seven years, but certainly I’ve tried to change the organisation in a way that it does start to work more with others and it does actually incorporate the views of people with autism. I know it’s not perfect but we’ve tried to change, we’ve tried to change it that way”.
Lydia: “So when you actually joined were you given some sort of…how did you get some specialist knowledge? Did they give you some sort of training programme or were you just thrown in?”
[There is then some awkward laughter from both of us]
Mark: “I suppose I spent about a year really going around visiting lots of our services, visiting lots of other organisations, conferences, meeting people, talking to people with autism, talking to people who run autism services, talking to people who commission autism services. So I really just tried to immerse myself in that world and constantly trying to do that by talking to adults with autism, talking to families, just constantly doing that.
But I’m not – I mean my job is running and managing the charity it’s not ‘autism specialist’ – I mean there are plenty of people here who are, but it’s not that – but that’s what I, that’s what I did.”
The Debate around the apparent lack of Senior Level Employees within the NAS
When Mark is asked how many autistic people are employed by the NAS he replies “We don’t know how many people with autism we employ because not everyone actually declares their autism when they join us interestingly enough. Some people actively don’t want to declare their autism.
We employ three and a half thousand people in total, the vast majority of those are frontline support worker roles so I know we have a number of people with autism who are support workers providing intense 1-2-1 support to people with autism. We have a number of people that we’ve recruited in ‘Head of’ type roles within the organisation. And we actively try to recruit people with autism into those roles in the organisation. We certainly have [for] all of our management appointments a panel of people with autism who asses and actually advise on who we employ and who we don’t employ”.
During our discussion on this topic Mark mentioned that one autistic person had been recruited into a newly created ‘Head of Autism Knowledge & Expertise’ role.
What Happened Next?
During the Interview: Mark stated “We have a number of people that we’ve recruited in ‘Head of’ type roles within the organisation”
After the Interview: During the fact-checking process after the interview confirmation was requested of Mark’s statement about the number of senior level autistic people within the NAS. The NAS responded with the following:
“We cannot provide a definitive figure for the numbers of people with autism at the head office or across the organisation. However, every three years we conduct a survey and the results of the last survey in 2012 showed 6.4% of NAS employees who completed the survey said that they had autism”
Unfortunately I can find no-one from my network of contacts who are or have been involved with the NAS who can confirm Mark’s view that there are a ‘number of’ senior level autistic employees within the NAS. Everybody mentioned the name of just one person – the person who Mark himself named during the interview who has been appointed to the role of ‘Head of Autism Knowledge & Expertise’.
During the Interview: Mark mentioned that an autistic person had been recruited into a newly created ‘Head of Autism Knowledge & Expertise’ role.
After the Interview: During the fact-checking process after the interview it transpired that the role of ‘Head of Autism Knowledge & Expertise’ is actually a job share which distributes a full time role between two people – one who is autistic and one whom the NAS have confirmed is not autistic.
When a subsequent enquiry was made as to the nature of the job share following the interview, the NAS stated that “This decision was made because the experience and expertise of the candidates complements the other to give a wider perspective to the job.”
Mark Lever’s view of a ‘Police Marker’ for Autism
Note: The below part of the interview has been published verbatim with minimal editing.
Lydia: “Another autistic adult has drawn my attention to a provisional plan for an ‘Autism Marker’ on the Police National Computer. Are you familiar with this proposal?”
Lydia: “So essentially the police would have some sort of record of whoever is autistic so that if they ever come into contact with the police…”
Mark: “Yeah, I know there’s talk about markers on some databases so that they can provide better support to people. So are they [the autistic adult who posed the question] seeing that as a positive thing or are they concerned about it?”
Lydia: “Well they’re just not sure, that’s the thing. I think their question is ‘where do the police get that information from’ – we weren’t sure if you knew that, that was the question”
Mark: “I…I imagine it’s 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’ .
The NAS position
In February 2015 the National Autistic Society’s Policy & Parliamentary team issued the following response to an enquiry about their involvement with the ‘Autism Marker’ on the Police National Computer (PNC):
“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.
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.”
A more detailed analysis of the debate around the introduction of a potential ‘Autism Marker’ on police databases is available for further reading here.
What stands out in the above statement – and Mark’s own choice of language during this part of the interview – is that the NAS are using the phrases “people with autism”, “someone has autism” and “having autism” to describe autism.
The use of these phrases are not appropriate for the reasons outlined in part four of this interview – ‘The Language of Autism’ which can be found here.
In addition, the above statement makes it clear that the NAS has a dedicated ‘Policy & Parliamentary team’ who advise and consult at the highest level on important issues affecting autistic people.
The willingness of the NAS Policy & Parliamentary team to ‘get involved’ with discussions around the police marker is a direct contrast to the ‘deafening silence’ from the team when the NAS was asked if it will initiate a formal consultation about the introduction of a new pre-pregnancy test for autism being prepared for market. As part five of this interview shows – the NAS are refusing to engage in a formal discussion on the topic despite this test and others like it posing a huge threat to the future autistic population.
This topic is explored in more detail in part five of this interview “The Debate around Genetic Testing for Autism – Where does the NAS stand on Pre-Pregnancy and Prenatal tests for Autism?” which is available here.
Do NAS employees need more ‘Autism Awareness’ training?
During part one of this interview, when discussing the Ask Autism project, Mark made it clear that the NAS needs to do more to better engage with autistic people.
Before the interview an autistic adult emailed in and explained that they had a negative experience with the NAS reception staff and when they asked if either of the receptionists had been given autism awareness training he states that he was told that neither of them had. This adult had the following message for Mark Lever:
“The NAS needs to lead by example or it will alienate autistic people – and will give statutory authorities an excuse to continue ignoring the Autism Act.”,
This person also requested I pose the following question to Mark:
“Why doesn’t the NAS provide autism awareness training to all its staff, especially frontline personnel”
Mark responded as follows:
“People working on reception should receive autism awareness training, I don’t know why that’s happened and I don’t know who…it may be that if somebody’s sick they’ve got a temp [the next part of the audio recording is unclear]…he was very unlucky and as you said about the Ask Autism [online training]…the Ask Autism modules are being rolled out to all our staff so all our staff use that”.
Is the NAS a Charity or a Charitable Business?
It became clear during part two of this interview that the core function of the NAS is as a provider of local authority contracts for a variety of autism-related services – 90% of NAS revenue is generated this way.
If you take away the public sector contracts the NAS has a charitable turnover of just £7m to provide the frontline ‘charity’ support services for autistic children/adults and their parents.
This funding disparity is what gives rise to the view that the NAS functions like a business with a ‘charity bit on the side’. Where the core public sector funding is being squeezed Mark makes it clear that charitable service cutbacks are the end result: “we have to stop, we have to cut back on the amount of work that we do in that area”.
The NAS makes much of the fact it is a charity yet Mark explains that the core traditional NAS business is in delivering public sector contracts to run residential schools and supported living services – with any surplus going towards the ‘charity bit’ traditionally funded from the profits made from those contracts.
To me this business model sounds less like a ‘charity’ which receives public and corporate donations to provide mainly ‘free’ services to help support the particular group it is catering to and more like that of a Charitable Business which is defined as follows:
‘A charitable trading company (CTC) is a company which is set up to trade on behalf of a charity, as a means of raising funds for that charity. The main reason for needing such a company is the general rule that a charity may not undertake trading except as an incidental part of its main activity.’
The text from the website the definition is taken from explains that ‘Charitable trading companies are very common, especially where the parent charity is a large concern or relies heavily on retail or other types of trading to generate income. A well-known example of this in practice is the charity Oxfam, which operates a trading company as a means of running its shops’.
Perhaps the NAS business model is more like that of social enterprise which is defined as follows:
‘Social enterprises are businesses that trade to tackle social problems, improve communities, people’s life chances, or the environment. They make their money from selling goods and services in the open market, but they reinvest their profits back into the business or the local community’
The NAS website states the following: ‘The National Autistic Society (NAS) is the UK’s leading charity for people with autism and their families’
If the NAS is legally registered as a charitable business or social enterprise and not a charity this is not made clear. If it is legally registered as a charity, it is not clear how the 90% of turnover generated by local government service contracts sits with the regulation that “the general rule that a charity may not undertake trading except as an incidental part of its main activity”.
Thanks to the Team
This interview series wouldn’t have been able to ‘challenge the facts’ and provide some of the key insights without a ‘team’ of people behind the scenes helping to source the relevant information and/or pointing me in the direction of where to look to find it.
This site is new at time of writing and instant results are not expected following the publication of this series – change takes time and it takes people a while to digest the truth.
This interview series will become a permanent fixture of this site and is laying the foundation for future debate on the points highlighted, which will endure and remain relevant for years’ to come.
This interview series will also serve as a record that people were warned about the impact of prenatal and pre-pregnancy testing on the future autistic population at a time when people and organisations in positions of influence had the opportunity to do something about it.
Thank you to all involved.
About the Author
Lydia Andal is an autistic campaign journalist and author who draws attention to the issues affecting under-represented parts of society.
Lydia’s new book ‘Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults (Digital Edition)’ is available to order now at all major digital bookstores with the print edition scheduled for Autumn 2015.
Lydia grew up in Essex before graduating with a 2:1 Degree in Business & Entrepreneurship and relocating to Manchester where she worked in the corporate sector before setting up her first business age 23.
Lydia is an Ambassador for Potential Plus UK gifted children’s society which works to highlight that giftedness only represents potential – without special support many gifted children never reach their full potential in society.
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