Online Extra Issue Six Ask autism: How the National Autistic Society let Greed get in the way of its Goals

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

I first heard about Ask autism, the new autism awareness initiative from the National Autistic Society (NAS) at The Autism Show in Manchester. I was looking for the NAS booth as I was working on The Autism Issue and thought I might find some useful information on what services the NAS had to offer to autistic people which I could reference in the magazine.

There may well have been a little NAS information stand somewhere but I didn’t find it, instead I was directed to their huge flagship stand (in the prime spot of the exhibition hall), which was dedicated to some sort of campaign called ‘Ask autism’.

The only information materials available were an Ask autism brochure on tables closely guarded by what looked like sales people. I was a bit confused; this definitely wasn’t an ‘information point’.

“I’m autistic, so this is a bit of a nightmare scenario.”

I’m autistic, so this is a bit of a nightmare scenario. I didn’t know what ‘Ask autism’ was and I was clearly going to have to ask one of the ‘sales people’ for more information in order to get the brochure. When I did, the advisor said something about a new online training course to help people understand autism.

I was definitely talking to a sales person.

An intelligent, knowledgeable and professional sales person, but one clearly put on the stand with the sole remit to promote the course and the course only.

It turned out that the advisor was himself autistic and he made a point that that the course had been put together with the input of autistic people as the autistic community were not happy at being represented by the views of medical professionals – this was autism in their own words.

“the course had been put together with the input of autistic people as the autistic community were not happy at being represented by the views of medical professionals – this was autism in their own words.”

I asked who the course was aimed at and he replied that it was for autistic and non-autistic people who want to understand more about autism whether they are family members, friends or co-workers.

By now I knew I had to profile the course for the issue somehow; the advisor had totally won me over with his commitment to the initiative.

Then I realised a snag; he hadn’t said anything about the price.

A Review of Ask autism

Firstly, this is a brilliant information and learning tool.

I’m sure I’m meant to save that until the end but I just had to state it up front. It’s brilliant.

I was sent the log in details by email and once logged in the different modules were clearly signposted and the interface was bright, colourful and modern looking. I completed the initial learning assessment (which you do at the start of every module to assess your current knowledge levels of that particular autism-related topic) and clicked through to the main module. Everything worked smoothly and looked good; this was clearly going to be a very innovative course on autism.

Private Screenings Only

The first module ‘Understanding Autism’ opened with the following text:

“This module provides perspectives from people on the autism spectrum about how autism is defined and experienced. The module will enable learners to recognise the strengths and challenges experienced by many autistic people and how to respond to create enabling environments.”

At this point I wasn’t sure if this course was going to be relevant to me as an autistic adult as I thought it might be geared towards families and those who work with autistic people, however I was pleasantly surprised after I watched the first video (What autism means to me).

“I was struck by how the autistic contributors had summed up in three minutes what no book I had ever read, or talk I had ever seen on autism has managed to do so concisely.”

I was struck by how the autistic contributors had summed up in three minutes what no book I had ever read, or talk I had ever seen on autism has managed to do so concisely. They captured what it’s like to be autistic whilst effectively demonstrating how no two autistic people are the same. This ‘shared’ experience was already helping me to make more sense of my own experiences of autism.

I wondered by this video clip wasn’t featured on the main NAS website.

As I worked through the rest of the modules there were interesting insights into autism that I found really helped me understand my autistic traits better whilst providing a window into why non-autistic people can sometimes struggle to comprehend them. This tool seems to join together both views and will provide just as much benefit to a parent, partner or friend as it would to an autistic person.

“I was particularly interested in seeing how other autistic people described ‘Sensory Overload’ as it’s something I’ve had to learn to manage over the years.”

I was particularly interested in seeing how other autistic people described ‘Sensory Overload’ as it’s something I’ve had to learn to manage over the years. Currently I work 12-14 hour days and can concentrate for long stretches of time but that’s because I’ve learnt to structure my environment around my strengths and minimise any ‘stressors’.

Sometimes however, sensory overload is inevitable; a trip to The Autism Show is a good example.

The Autism Show

I wanted to see some talks by autistic people but when I arrived my brain stress levels starting rising when I saw the huge size of the main theatre and I noticed the speakers I wanted to see were in a ‘hub’.

Why had the event organisers and the NAS who provide the speakers given preference in the main theatre to non-autistic ‘academic and medical professional speakers’ – whereas many brilliant autistic speakers appeared to have been hived off to the sidelines in the ‘hub’?. Was The Autism Show not aimed at autistic people like me?

So I started looking for the hub. As it was described as a ‘hub’ I was expecting a ‘hub’ with talks being delivered in a partially enclosed environment of some sort.

“this space was definitely not designed by an autistic person.”

What I found was a row of uncomfortable-looking (but shiny) stools set in the middle of the exhibition hall completely exposed to the thoroughfare of people moving around from one stand to the next; this space was definitely not designed by an autistic person.

To make matters a bit more confusing the hub was a silent environment as there were no loudspeakers and all the people watching the talk were wearing ear pieces. I guessed this was so as not to distress autistic people sensitive to noise and a friendly lady handed me an earpiece.

Unfortunately these were bulky ‘in ear’ headphones without disposable hygiene sheets on them which were replaced from one person to the next and the lady had not been provided with antibacterial wipes either. I am not an OCD clean type but when it comes to putting something directly in my ears this lack of hygiene was making my gut churn.

“I am not an OCD clean type but when it comes to putting something directly in my ears this lack of hygiene was making my gut churn.”

When I sat down in the exposed hub area with people brushing by me to get from one stand to the next my sensory overload started triggering as I realised I wasn’t going to be able to sit in this environment with people knocking against me, and as soon as I put the earphones in I wouldn’t be able to hear the sound of someone approaching; I am autistically sensitive about my personal space.

Time for a pep talk.

I’m 33 years old. I edit a magazine. I run a business. I’ve travelled the world. I can do this.

Deep breath, reached for the ear piece; I will sit through the next talk and see how I go.

Then I realised one earpiece had what looked like a bit of ear crud on it from the previous person and that was it.

What’s all this got to with Ask autism? (Other than the fact several Ask autism speakers featured in the show programme)

Working though the module on “Autism and Sensory Experience”, it was interesting to see how similar my experiences were to those of the autistic contributors featured in the course. Some described their experiences as follows:

What it is like to experience Sensory overload:

“Like your senses shut down because they can’t take any more. I become irritable and upset.”

“Chaotic, confusing, overwhelming, frightening, loud, disorientating, fragmenting.”

“Agony, everything fades away apart from whatever is causing the overload – a sound, a smell, someone standing too close until it takes over all my thoughts and I get headaches, agitated, pace, angry, annoyed but none of it makes the sound or smell go away. It takes me over completely.”

“My brain stops functioning and I cannot carry out simple procedures, like making a price comparison. I have to use defensive mechanisms to get through the situation, but afterwards I feel exhausted and often need to sleep for several hours.”

The course also captures the positive aspects of the autistic sensory experience:

“The elements, the sun on the face, the wind in my hair and the fragrance of the flowers and even the coldness and the feeling of the earth and the grass, the cool grass and the warm grass, beneath my bare feet. It’s, it’s a delightful experience.”

“There are no ignorant medical ‘professionals’ with their outdated views on autism as an ‘empathy deficit’ or autism as an ‘mental illness’ or ‘disease’”

Again, I felt like this course was really ground-breaking. It is the first information tool which really feels like it has been made by autistic people. There are no ignorant medical ‘professionals’ with their outdated views on autism as an ‘empathy deficit’ or autism as an ‘mental illness’ or ‘disease’ (these views and other inaccurate views commonly held by the medical community are tackled head on in the course), it’s just autistic people talking about what it’s like to be autistic in a way no book or article can never capture.

Technical Difficulties

If there is one drawback it would be that sometimes the different components of the module can be difficult to navigate around as whilst the tool registers when you have completed a module, there is no ‘save’ feature whilst you are completing the individual components. This means that if you log out before completion (which I always seemed to do), you have to log back in and remember where you left off. As each module is broken down into different sections and subsections of up to 11 parts each, this leads to the tedium of randomly clicking through until you find the page you were on before. All this would be fixed with a simple ‘save’ feature that saved the exact page you were on when you exit.

“this is a great tool for helping autistic people make sense of their autistic world.”

In summary, this is a great tool for helping autistic people make sense of their autistic world. Families of an autistic person can play around with the interactive ‘games’ which help them understand what elements of an environment are likely to be calming or stressful for their autistic brother, sister, son or daughter. Friends, partners and work colleagues of autistic people will be able to learn more about what autism is and why one autistic person might struggle with getting on a crowded tube whilst another loves being around noisy fast-moving environments like a race track.

The Price Barrier

The development of the course was paid for by a third-party donor at no cost to the NAS.

The NAS generate revenue from licensing the course and providing additional training & consultancy services to organisations whose employees work with autistic people – this seems a sensible way to generate revenue for the charity.

“prospective autistic users and parents – for whom this course will have many benefits – will need to part with £150 (£120 if you buy all modules upfront) to receive an access code.”

The sticking point is that prospective autistic users and parents – for whom this course will have many benefits – will need to part with £150 (£120 if you buy all modules upfront) to receive an access code.

NAS members only get a 20% discount and this doesn’t seem right.

Before you log-off from this article thinking that the review is over – please stick with it. This tale is about to take twists and turns you won’t have seen coming.

Behind the Scenes

The very professional Rachel Sloan is the Manager of the Ask autism Service and she was happy to highlight that she herself is autistic as are the two other members of the team (one of whom contributed an article to The Autism Issue here). Rachel emailed me the following with the log-in details:

“Can I also ask if it would be possible to perhaps contribute further to your article as the online modules are one component of our service however our service is about any training and consultancy products but uniquely our full team is on the autism spectrum and all our resources are produced by ourselves and also over 150 other people on the spectrum who we contact with various opportunities when they arise.”

I was struck that Rachel was pushing Ask autism as a ‘product and service’ rather than an ‘information tool’ which was my initial view of it. I re-checked the brochure from the exhibition; her language mirrored that of that brochure.

When I completed the course I emailed Rachel some questions to help provide a bit of background information on how and why the course was developed. Here are the answers:

What is Ask autism?

“Ask autism is a unique training and consultancy service, created and led by people on the autism spectrum, with support from the UK’s leading autism charity, the National Autistic Society (NAS). It provides academic, professional, and expert knowledge on autism with the added advantage of also providing the “insider” perspective of those on the autism spectrum. 

The Ask autism team has already delivered various face-to-face training events, consultancy work, and environmental audits. We have also released five online modules covering a range of topics to support professionals and organisations in their autism knowledge, practice and understanding from the autistic perspective. We also have two other online modules coming soon – Autism and Sport, and Autism and Criminal Justice.

Ask autism training aims to put participation at the heart of professional learning, a theme which runs through all aspects of autism strategy work across the UK.”

How is Ask autism funded?

“The development of Ask autism was funded by the Trafigura foundation”

Who is the course for?

“The online modules are suited to anyone who has contact with someone on the autism spectrum, whether as colleagues, clients, family members, or members of the public. The modules were designed to be accessible to all but with particular attention to those working in public sectors such as health, social services, education, as well as the civil service and local government.

We initially used the NAS’ social media channels, which have a fantastic reach, to invite people on the spectrum to contribute to the development of Ask autism. We also approached employees of the NAS on the spectrum, and in turn asked them if they knew of any contacts of their own who might like to be involved. We now have a large pool of people on the spectrum interested in contributing to our training and consultancy services. We are proud to have had over 70 people across the autism spectrum input to our modules and recently had 28 people speaking at the Autism Show in Manchester and London. This January we ran our first autistic-led conference on participation, and we will run another conference early next year.”

How much does it cost?

“Our online modules have now been provided for free to all NAS employees and volunteers. We also offer a discount of 20% to all individual NAS members. To receive the discount, members can get in touch with Ask autism and provide their membership number to receive the discount code. We also offer large discounts to organisations buying multiple modules.”

A Different View of Ask autism

I found some of these answers a bit perplexing as Rachel (who is the Ask autism manager but not part of the Senior NAS Leadership team who ultimately would have decided the direction for this), said Ask autism has been designed to be ‘accessible to all’, yet she mentioned every group except autistic people (in line with the brochure). In contrast, the advisor on the stand pushed it as a tool useful for autistic people and their families.

Clearly the tool has a dual use but by now several areas of concern were rising around the initiative:

The treatment of Ask autism as a separate service to the National Autistic society

“Ask autism is a unique training and consultancy service, created and led by people on the autism spectrum, with support from the UK’s leading autism charity, the National Autistic Society (NAS).”.

The phrasing “with support from” makes it seem that Ask autism is somehow separate to the NAS. It isn’t. A simple download of the price list and check of the website confirms this. Is the reason for this phrasing an attempt to put distance between the charitable aims of the NAS and the financial-driven aims of the Ask autism service?

“Is the reason for this phrasing an attempt to put distance between the charitable aims of the NAS and the financial-driven aims of the Ask autism service?”

Why isn’t the NAS doing more to engage autistic people with this course?

“The online modules are suited to anyone who has contact with someone on the autism spectrum, whether as colleagues, clients, family members, or members of the public. The modules were designed to be accessible to all but with particular attention to those working in public sectors such as health, social services, education, as well as the civil service and local government.”

Why doesn’t the above mention autistic people as well? As Rachel says, they made it:

We are proud to have had over 70 people across the autism spectrum input to our modules”

The NAS (which stands for ‘National Autistic Society’ remember), wouldn’t be generating any revenue from Ask autism at all without the contributions of the autistic people who created it. The course would clearly benefit autistic people, so why have they not been included as part of the target market for this course?

Is this seeming lack of interest in the autistic ‘market’ linked to NAS research which claims that 79% of autistic people are unable to find work?

Did someone at NAS HQ calculate that unemployed autistic people wouldn’t have the funds to find £120-£150 for the course?

Surely, only a cynic would say that.

The Cost of the Service

Tellingly, Rachel didn’t answer the simple question of how much the course costs instead stating:

Our online modules have now been provided for free to all NAS employees and volunteers. We also offer a discount of 20% to all individual NAS members. To receive the discount, members can get in touch with Ask autism and provide their membership number to receive the discount code. We also offer large discounts to organisations buying multiple modules.”

This comment raises several issues:

The NAS has previously stated that 79% of autistic adults are unable to find work. Assuming unemployed adults form a key part of the autistic adult membership of the NAS, then the NAS must be aware that £120 is totally beyond their reach even though they are the people who need the additional support the most.

No doubt the NAS will say that the modules are available to purchase individually at £24 each but even then, when £24 represents a choice between paying for a week of food or buying an online training module – autistic people (and hard-pressed families too), will be missing out. Surely the purpose of a charity is to prevent exactly this type of scenario happening?

The Pricing Sheet shows that large organisations are offered individual modules at a cheaper rate than members; £18 or less versus £24 for an NAS member (including VAT). Organisations pay for the course through their training budget, NAS members pay for it out of their family budget. Remembering that the NAS is a charity which generates nearly £100m a year in funding with a remit to support those ‘living with autism’, charging cash-strapped members up to twice as much as a large organisation does not seem right.

“large organisations are offered individual modules at a cheaper rate than members; £18 or less versus £24 for an NAS member.”

NAS Conferences 

Rachel mentions that “This January we ran our first autistic-led conference on participation”.

A dig around the NAS website confirms that the ‘Autism and Participation conference’ covered amongst other things ‘how political representation for autistic people would be best achieved’ and was targeted at autistic people and their families well as ‘autism professionals’; NAS members needed a spare £54 – £210 to go.

Ask autism is funded by Oil Money

Yes you read that right.

When I was completing the course I noticed the logo of the Trafigura foundation appeared on every page. I hadn’t heard of this foundation but Rachel confirmed “The development of Ask autism was funded by the Trafigura foundation”.

When I searched the name online I came across this article in the Guardian:

“Trafigura founder Graham Sharp’s £3m gift to Oxford university causes anger. Donation linked to scandal-hit oil trading company should be rejected, say Oxford students and teaching staff”

Uh-oh.

After doing some further research, I could spend all day writing about how the Trafigura foundation functions as the charitable arm of the oil trading company Trafigura. I could write about how Trafigura has been fined by a court in the Netherlands for illegally exporting tonnes of toxic waste to West Africa and has paid over £100m following the environmental toxic waste scandal affecting 100,000 people in the Ivory Coast. Or I could write about how it is being investigated by the UN to establish whether it supplied a company linked to Iran’s nuclear programme.

Instead, as the Guardian provides an in-depth overview on all the controversy surrounding Trafigura I’m going to provide a link here. If you haven’t got time to follow up I’ll abbreviate: this company seems to exemplify why oil companies have a bad name.

How does this affect the NAS?

“The Trafigura foundation paid for the development of Ask autism and their logo is on every page of the course.”

The Trafigura foundation paid for the development of Ask autism and their logo is on every page of the course. Even if you can stomach that (I am grateful for my blissful ignorance at the time I was doing the review), you might not be able to stomach this:

Even though the Trafigura foundation paid for the development of the online course (at no cost to the NAS), if you want to complete the course it will cost you £150 if you purchase the modules one at a time or £120 if you pay up front – with 20% off if you’re a member.

All it costs the NAS is the time taken to send an automated log-in email.

What are the NAS doing?

Ask autism is a great tool which can really help people understand more about what autism is. This is a great example of what the NAS should be doing to raise awareness of autism; so why are they restricting access to only those with money?

Here is the mission statement of the NAS:

“The National Autistic Society is the UK’s leading charity for people affected by autism.

We want a world where all people living with autism get to lead the life they choose.

We will transform understanding of autism and make sure everyone living with autism gets the support they need.”

This is an admirable goal yet currently, it seems to be the NAS not autistic people and their families who seem to be the main beneficiaries of this donation.

For those thinking ‘as a charity the NAS needs all the money they can get’, I would agree. As long as the money is being fed back into support services for those ‘living with autism’ in line with their mission statement.

The pricing decision for Ask autism would have been taken by some of the 30 NAS senior level employees earning between £60k-£140k who wouldn’t struggle to afford this course if they had to pay for it.

However, taking a significant amount of money from the very people who need this type of support whilst barring access for those who have paid membership fees yet can’t afford the extra fee for the course seems odd at best and deeply unethical at worst.

“The pricing decision for Ask autism would have been taken by some of the 30 NAS senior level employees earning between £60k-£140k who wouldn’t struggle to afford this course if they had to pay for it.”

Is the NAS a Business or a Charity?

It’s not that I don’t need the cash, but I give The New Idealist away for free precisely because I don’t want price to be a barrier to anyone accessing the information within it.

The Autism Issue is a good example of why this non-commercial ‘open access’ model is important.

Whilst I don’t run The New Idealist for commercial reasons I am comfortable with the commercialisation of services in my day job (running my own career management agency) because that is run in a business context. People pay me to improve their Interview Coaching skills to help them get a promotion and earn more money. The investment in my service pays itself back many times over when the client secures a higher salary. It’s a win-win scenario.

My point is that I am not ‘anti-business’ and my business is not a charity. I am not against the commercialisation of business.

“However, the NAS is not a business. It is a charity and by definition it is non-profit so why is it taking such a ruthless profiteering approach to Ask autism?”

However, the NAS is not a business. It is a charity and by definition it is non-profit so why is it taking such a ruthless profiteering approach to Ask autism?

I tracked down the job description for the role of Ask autism manager. It includes the following:

“Managing the team to ensure business plan objectives are met.”

“Ensuring successful marketing of new products”

It’s clear Ask autism isn’t viewed internally as a ‘service’ but as a ‘product’.

There is a big difference between the two. In my view a charity provides a ‘service’, a business provides a ‘product’.

“It’s as if the NAS have been overtaken by the greed-driven ethos of the oil company which funded them.”

It’s as if the NAS have been overtaken by the greed-driven ethos of the oil company which funded them. The NAS seem to have found themselves awash with oil money, struck gold in the development of a really high quality learning tool and are now behaving like over-zealous corporate oil executives  in ensuring their ‘pot of gold’ is accessed only by those with the means to pay a hefty fee.

Ask autism should be an Open Access Resource

Imagine if a first aid charity with a remit to help ‘the public’ better understand first aid received funding from a third-party donor to develop a new online course to help people learn first aid.

They developed a brilliant first aid course which was useful for all manner of people visiting their charity website; this thing would save lives.

But, even though the charity (which has nearly 3,500 employees and generates nearly £100m in funding every year) didn’t pay a penny for the course and made lots of money from selling it to companies in need of first aid training for their employees – they wouldn’t let ‘the public’ complete the course unless they paid £150.

What would people think of that charity?

“it should be remaining true to its charitable goal and making the course available via open access on it’s website for everyone to find out more about autism; at no cost.”

In an ideal world, as the NAS has been able to develop the course for ‘free’ at no cost to themselves, it should be remaining true to its charitable goal and making the course available via open access on its website for everyone to find out more about autism; at no cost. This is the type of thing charities are meant to do.

The NAS can still generate substantial revenue from the add-on workshops and consultancy services it offers to organisations; it wouldn’t lose out on revenue there.

If the NAS doesn’t want to take a pure ‘charity’ approach to this (and it clearly doesn’t), as a minimum it should make Ask autism free to members who have already paid annual membership fees to receive support. Again, the NAS wouldn’t lose out as this should actually increase memberships as more people would join purely to access the course if nothing else.

This tool could also have been a useful way for the NAS to address criticisms that it offers minimal support for autistic adults. (A contact has informed me that only around 1,000 out of 18,000 NAS members are autistic adults, largely due to the lack of dedicated support services it provides them. Apparently the remaining 17,000 are mainly parents of autistic children).

If every member was provided with a five user access code for example, this tool would be a great way for autistic adults to help their friends and work colleagues (who will never pay £150 for a course) find out more about autism. All they would need to do is email them an access code so their co-worker, friend, partner or family member could log on and find out more.

Also, the NAS gets huge amounts of traffic from people looking for information on what autism is and the majority of its website attempts to explain autism but struggles as it has not been written by autistic people. If the three minute clip on ‘understanding autism’ that I highlighted at the start of the review was featured on the NAS homepage or in the ‘about’ section, it would be a great starting point for parents, siblings and partners of autistic people – whilst making the job of explaining what autism is a lot easier for the NAS.

“If the three minute clip on ‘understanding autism’ that I highlighted at the start of the review was featured on the NAS homepage or in the ‘about’ section, it would be a great starting point for parents, siblings and partners of autistic people”

If the NAS truly considers itself a charity (which it should as it is legally registered as such), then it should consider that charging people in desperate need of exactly this type of support between £120-£150 to access an extremely valuable online course paid for not by the NAS but by a third party – a very uncharitable thing to do.

(Note: I would like to make clear that my issue with Ask autism lay with the non-autistic leadership of the NAS who decided the strategic direction and pricing of the tool – not the autistic contributors or employees of the project who I doubt would have been involved in pricing discussions).

Footnote:

How did I end up here?

I’ve just realised I’ve written a 5,000 word essay referencing corporate corruption, greed, oil money and nuclear supply deals – and all I wanted was a leaflet on the benefits of NAS membership.

This could only happen in the world of the ‘Autism Industry’. A darkly mysterious place where, as I’m quickly learning – nothing is ever as it appears.

(Note: Apologies for the unwieldy edit of this article. I had no idea the twists and turns this story was going to take at the outset and I hadn’t set time aside to write something this in-depth. I am aware this article has not been tightly edited and I’m already late publishing it).

NAS Response

I gave the NAS a chance to respond to some of the key issues raised in this article (and some I didn’t have the time or energy to cover in more detail – maybe next time). Here is their response:

1) Why does the NAS still use the terminology “person with autism” when its own training tool advises people to use the phrase “autistic person”

An NAS spokesperson said: “Autism affects people in very different ways and people with the condition often have different preferences for how they like to be described. Some people do not want to feel that they are ‘defined’ by their disability and prefer to be described as a ‘person with autism’ or someone ‘on the spectrum’. Others prefer to be referred to as ‘autistic’.

The Ask Autism materials were developed by a team of people on the autism spectrum who have a strong preference to being referred to as ‘autistic’ and the NAS was keen to support them.

The NAS constantly reviews its practices and recently consulted a large number of people on the spectrum, parents and families of people with autism, and autism professionals, as part of a significant piece of research into the way people describe autism in the UK today. The NAS will adapt its terminology according to the results of this research when it is published later this year.

The NAS already uses a variety of terms to describe autism, including ‘on the spectrum’ and ‘ASD’, as well as ‘people with autism’, and we are committed to championing the rights and preferences of everyone affected by autism in the UK.”

2) Why has the NAS not made Ask autism available free of charge to members as standard?

An NAS spokesperson said: “As a charity, the NAS is reliant on funding to provide information, support and services to people on the autism spectrum.

We strive to make sure that as many services as possible are free at the point of use but even these have to be funded in some way. Funding for Ask autism covered the high cost of developing the materials and the launch of the service. To meet the ongoing costs of maintaining Ask autism we created a sustainable and cost effective model, in line with many other NAS services and products. We’re offering a 20% discount to all our members so we can reach as many people as possible.”

3) Is the NAS aware that the Trafigura foundation is the charitable arm of the Trafigura oil trading company, if so, are the NAS aware of the ethical implications of accepting this funding? If not, what do the NAS have to say now they are aware?

An NAS spokesperson said: “The NAS would not work with any company that acted in contravention to our charitable objectives.

Our partnership with The Trafigura Foundation has always been in the public domain and continued following a thorough ethical risk assessment at the time the incident in the Ivory Coast came to light. Their support has helped us to meet the growing demand for advice, support and services for people with autism and made it possible to develop and launch the Ask autism project.”

About the Author

Lydia Andal is Founder and Editor of The New Idealist magazine, Short Story Sunday and the owner of a small, busy career management agency.

Comments (please note the below comments have been transferred over from The Intelligent Review site which originally published this article before it transferred to this site).

Caroline Hearst
December 12, 2014 at 10:44 pm
Thanks for writing this article. I think it is a great idea that Ask Autism should give the training resource free to autistic people. I doubt that the issues you raise about charities operating as businesses is unique to the autism world. I think unfortunatley that the charities and NGO’s have tended to take on business type values and language – the whole idea of getting sponsorship from corporates seems to me to be a sort of “social washing” for these tax avoiding entities, and many otherwise worthy organisations are tainted by their relatiionships with these “sponsors’.

TIR
December 12, 2014 at 11:23 pm
Thank you Caroline for your thoughts on this article.
It would be great if the NAS made Ask Autism a free training resource – particularly as they didn’t pay anything for it in the first place.

You are correct about charity organisation’s being tainted by sponsorships and about the ‘charity as a business’ model operating in other sectors.

When you have charities like the NAS with layers of management earning generous salaries which rival the commercial sector they have to operate commercially to survive; ensuring the executive and management salaries are paid first and those at the ‘bottom’ of the pile – the very people the organisation is meant to help, being provided for last – if there is any money left over to fund the resources they need.

This is the issue with the ‘charity as a business’ model and the ruthless NAS approach to the commercialisation of ‘Ask Autism’ is a very good example of why this approach works against the very people the organisation is meant to be helping.

Best Regards,
Lydia Andal
Editor
The New Idealist

Kenn Jupp
February 25, 2015 at 9:48 am
I have only recently had this article passed to me and have to say I was delighted that it was written and published.

Sadly, the issues raised seem to me to be somewhat endemic throughout organisations (both large and small) that purport to work on behalf of disabled people. For years now, too many have continued to operate with a thin layer of benefit (with maximum publicity) passed to a relatively few people for whom the organisation was created, whilst at the same time, the lion’s share and privileges often appear to get little further than those working on their behalf.

This circumstance is so embedded within the management of many organisations now, that they are themselves totally unaware of it.
I am not disabled myself (well not yet anyway) but have spent many years within the disability “industry” regularly wincing at over-privileged out of touch officers, staff award ceremonies, perks of the job and the like, whilst those for whom the organisation was itself created have been left to struggle without much real thought or support.

Of course, a good number of staff and volunteers “working at the coal face” undoubtedly become more aware of the practical and emotional day to day issues that really matter to those people they serve, but the organisations themselves and their hierarchies, no matter how much they pontificate at the microphone and in their glossy brochures, still seem to have a great deal to learn.

TIR
February 25, 2015 at 11:26 am
Thank you Kenn for sharing your thoughts on this article.
Your experience of working within the disability ‘industry’ highlights the issue raised in the article – the largest organisations are run like commercial businesses with layers of hierarchy and wealth (in the form of executive/management level salaries) benefitting those at the top, whilst frontline support workers are often underpaid and overstretched, and services are ‘rationed’ for those in need who now find themselves at the bottom of the hierarchy – the very people the charity is meant to be helping.

You do raise an interesting insight into the publicity side of things and you are correct that the organisations within the disability industry have very well-oiled PR machines.
Perhaps this is a case of ‘All Spin and no Win’ for those in need who are priced out of access to services like the Ask Autism tool featured in this article.

On a sidenote – as the NAS devotes a lot of its press time to highlighting that around 90% of its adult membership are unemployed, I am considering doing a follow-up piece which looks at the policies and services that the NAS has in place to support unemployed autistic people as I have worked in recruitment/careers support myself and this is a special interest for me.
I am aware that the NAS employs around 3,000 people and would like to know how many of its paid employees are autistic?
As a charity I’m sure they will have published this somewhere – if anyone can share a link with the statistics on the number of autistic people employed by the NAS that would be appreciated.

If you would prefer to send the information in confidence please email:
autism [at] thenewidealist.co.uk

Best Regards,
Lydia Andal
Editor
The New Idealist

Mark Lever
February 25, 2015 at 2:01 pm
Hi Lydia, Id be more than happy to meet up and discuss this and other aspects of the work of the NAS if that would be helpful. Please let me know if you’d like to and we can fix up a time and place. Kind regards and best wishes. Mark Lever NAS CEO

TIR
February 25, 2015 at 3:42 pm
Hello Mark,

Thank you for getting in touch.

I will accept your offer of a meeting to discuss the issues around Ask Autism raised in this article and find out more about the NAS policies and programmes in place to help autistic people find work.
I will also ask my autistic contacts to send in any other questions they may have about the NAS.

I am based in Manchester but often travel to London for work purposes. I have your email and will be in touch in the next few days to discuss a time.

Best Regards,
Lydia Andal
Editor
The New Idealist

PS. If anyone reading this article has a question about the NAS they would like me to put to Mark Lever please email autism [at] thenewidealist.co.uk and I will do my best to include it.

Please note: The follow-up interview with Mark Lever, Chief Executive of the National Autistic Society can be read here.

Lydia’s book “Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for adults” is available now via Amazon. More information at AmIAutistic.com

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Lydia Andal
Lydia Andal

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