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.