Autism Awareness - funded research

No-one in positions of officialdom ever seems to answer a direct question, it's always the deflection and policitian-style response.  I think they are too scared because of potential legal implications, admissions of incompetence or being swamped with an outraged public response.

I also filled in one of the Department of Health on-line forms to ask whether the Government was happy with the outcomes for the £500,000 spent on these autism awareness and training packages.

I got a reply back 27th November from Ministerial Correspondence and Public Enquiries (I feel tempted to name the signatory).

Ignoring my question completely he tells me about the Review of the Adult Autism Strategy, the end of November interim report on the investigative stage of the review which, if out, I cannot find.

But at the end he does mention a report supposedly now out by John Simpson, a self-advocate on the Autism Progress Board "TO LOOK AT THE IMPACT OF THE ONLINE TRAINING MATERIALS THE DEPARTMENT OF HEALTH FUNDED".

But, apart maybe from NAS (who've just launched some courses you cannot find out about until you buy them), most of these aren't in the public sector, are restricted access, or in some cases were existing materials that were offered (in which case where did the money go?).  So the answer is likely to be NO IMPACT. Or a fairy story.

Thanks everyone for reassuring me that I wasn't just writing a personal blog on this. I thought I should update.

I wrote to the Department of Health pointing out that most of the 8 outcomes were private to the organisations concerned, and that the aim had been to generate widely available training resources.

I asked why this had not happened, and what efforts had been made to find out why the £0.5m project hadn't helped people on the spectrum get better-aware and better-informed services.

I got back an automated acknowledgement with a reference number. Three weeks on and I've heard nothing more.

I asked several of the organisations where the outcomes of the research weren't available, and only one replied, and only after asking for details of who I was, gave me the same unhelpful statement NAS had quoted on their website.

It would be nice to hear from NAS.......

It would be nice to know why £0.5m wasn't enough to generate universally available training and awareness material accessible to all on line.

To call the NAS a business would be an insult to business. It is an opportunity for a small number of people to line their pockets at the expense of the taxpayer and the people they are supposed to be helping. 

All the evidence points to NAS - or those running it, see it as a business not a charity. While my calculations may be wrong, I do not understand totally about the full running costs, but the amount of money to me is obscene and what is gets spent on seems to me to be mainly things that are not tangible.

People want help, that should be the main focus. Raising public awareness may not be a bad thing but what matters more to someone with an ASD ? - that he can get help or that the public are aware of his condition ? The same goes for the awards ceremonies, lectures, speeches, campaigns, theres just nothing tangilble, theres no bricks and mortar yet with that huge amount of money I am 100% sure even just a few dozen Autism centres could be set up in the major cities at least. They surely cannot cost that much out of such an astronomical budget.

There are thousands of people suffering while those who are supposed to be helping them and are gathing funds in the name of doing so, are failing them.

IntenseWorld said:

What I would say is, it's pathetic that the government can make all these laws and strategies but not back it up with money, and then no-one is accountable at any level because they can just cry off due to the resources side.

90% of the money the NAS receives comes from the government. The bosses then choose to fritter away much of it on things like posh offices and executive salary rises.

What I would say is, it's pathetic that the government can make all these laws and strategies but not back it up with money, and then no-one is accountable at any level because they can just cry off due to the resources side.

longman said:

This is beginning to feel like my own personal blog. Is no-one else at all interested in how autism awareness is progressing?

I read all your posts with interest Longman.  I only comment if I have an opinion or evidence to offer.

I am concerned that autism awareness is not wide-enough, I am concerned that no-one in positions of power seems to get us, but I guess I have become slightly apathetic because it seems such a mountain to climb to change things (if it's even possible) and I have pressing issues to deal with at the moment.

I am with you in spirit though.

There are countless independent ASD support groups that achieve much more for people with ASD than the NAS does using only a fraction of £0.5 million a year. Considering that the NAS bosses haven't noticed this then it raises the question as to whether they really understand ASD or they are out of touch corporate bosses with snouts in the trough.

This is beginning to feel like my own personal blog. Is no-one else at all interested in how autism awareness is progressing?

Now I've just read a NAS document that I do like.It is called "Autism: a guide for criminal justice professionals". It has been produced in conjunction with the Cooperative Bank, under the Keeping Safe project.

Instead of plunging straight into the Triad of Impairments, it deals directly with likely issues, and progresses through likely events. Why cannot NAS do something similar for such contexts as education and health?  I've read fact sheets galore over the past week which seem to stereotype people on the spectrum, and to contradict NAS's assertion we are all different. Now I find something I'm left wondering why all the other stuff is in circulation.

It explains autism effectively and clearly, and then explains why it is important to know if a person has autism. It clearly explains why people at the high functioning end, being independent of support, are more likely to come into contact with criminal justice professionals. That's something lacking in all the other fact sheets, which seem to go straight into marked autism as if anyone at the abler end is insignificant.

It tackles behaviours as they might arise and cause difficulty. But something similar could be done for schools or health professionals. It explains behaviours police might initially encounter that draw their attention to someone on the spectrum and how to manage this. They go into the process of interviewing, but similar situations could arise with health professionals or in an educational context.

Here's an approach I can fully appreciate as a valid one. But why has it only happened for criminal justice professionals?

And is it reaching the right people? Is this going out to the police, to law courts, custody centres etc.?  If it was being disseminated and its use upheld, then surely we would see an improvement.

I wonder if NAS spent it's share on the Push for Action Campaign? If autism affects 1% of the population, there should be 0.54 million people with autism in England.

The Push for Action campaign has so far netted 8,915 pledges of support in England. That's 1.65 (ie less than 2) pledges per 10 people with autism.

Not great impact. But what does it mean anyway?

One of the Push for Action objectives was in Training and Awareness. The section on "What is the issue?" talks about people not actually understanding the whole spectrum and how it affects most people differently. They then say "most people will cite 'Rain Man' and assume that all autistic people are the same as the character in the film".

So what is NAS doing to rectify this image?  Judging by their fact sheets we all closely fit the Triad of Impairments. Many of the things that affect people daily aren't covered by this, and any reference to even some of these is inconsistently dispersed through some of the factsheets four or five levels down in the website.

Using just the Triad of Impairments gives the impression we are all the same. And the Triad of Impairments is a pretty close match to Rain Man.

Surely better training and awareness needs to start with NAS. And so far over the last few days my comments on the NAS factsheets has produced zero response.

What we are supposed to be seeing is greater awareness across public services.

There's a dialogue with the Metropolitan Police on the "what do they know" website (www.whatdotheyknow.com/.../autism_asperger_training_of_metr  hand copied so may not work). It ran throm May to December 2011, initially with the Met being very cagey about what training was being provided. They just said they had an officer who had been commended for his training insight on autism.

Eventually in August 2011 they came up with a course outline. It was on mental ill health and learning disability awareness, and had no autism related content. It was mainly about mental health behavioural issues in public and in private.  I guess to the police autism is just a different word for mental.

Pressed to address autism independently they came up with a modified course outline 6 weeks later which had a short text by someone called Robyn (Robyn talks about her experience of Asperger's Syndrome), referring to sensory overload issues and literal understanding. They also provided a few paragraphs about the triad of impairments. One is left wondering whether this had ever been in the course but just scraped up to provide an answer.

However since June this year someone called Katherine Godsell, Psychological Services, seems to be providing Metropolitan Police training (over two days), but as its an advertisment, it isn't revealing about what is being taught. Would be great if it was progress.

But wasn't the £0.5m grant supposed to have provided material to this end?

An Independent Commission on Mental Health and Policing criticised the police for lack of training in mental health issues, but we're still not talking autism here.

I have asked several of the funded institutions and one has replied that they did make their E-Learning available for a year but because of the cost of supporting E-Learning asked the Department of Health to pay for it which they declined to do. So the package while free to their members can be purchased by outsiders for £35.

So I guess its down to money. Evidently the original funding didn't cover the cost and there's no more in the kitty. At least it was available for year (to anyone who knew about it?). And while it wasn't obvious from their website it is still purchasable.

But the beneficiaries of these projects, supposedly, were people on the spectrum, for whom having better informed public services would have made a difference.

Frankly there's little sign of better informed public services.

I think the autism community have been badly let down and the reality of the Autism Strategy may be little change if any.

And I wish NAS would comment instead of ignoring this and hoping I'll go away.

When the Department of Health announced this £0.5m funding in December 2011 it was to generate a series on on-line training resources and booklets to increase awareness and understanding of autism across all public services. Each of the 8 recipients was to address a different aspect.

So what we should have is a publicly accessible resource that majorly enhances the understanding of autism in every public service.

What we've actually got are restricted access packages (members only or only if you pay up front), about which the public can find out little if anything. And some organisations used material they had already produced.

It looks like the money has been frittered away. Certainly if it was an equal division, every recipient organisation got over £60,000 to spend on this. Going by what Paull says that barely covers the NAS chief executive's salary rise for the last two years!

So maybe £60,000 wasn't enough to produce anything useful. But I'd sure like to see evidence of at least something coming out of each organisation.

I've asked the Department of Health what happened to this initiative. Don't suppose I'll get an answer.

Paull, I know a little about overheads and £20,000 a year salary costs an organisation nearly double that. The biggest outgoing for most charities is salaries, and the amount paid to a chief executive doesn't make that big a hole proportionately. Its not NAS's fault that chief executives have ridiculous expectations.

There used to be a time when being "chief executive" meant something - like they'd carry the blame if something went wrong. Nowadays if they screw up and have to go, their contracts include a hefty compensation pay out. Quite a few local authorities have already learned that sacking a chief executive costs upwards of half a million pounds.

So its not NAS's fault the chief executive is costing them. No-one has any choice.

I'd rather focus on the message NAS is giving out. The problem with Push for Action is it is asking others to make changes when NAS is patently not a good example.

I couldn't agree more Longman....It's preposterous, it truly is. All this money floating about getting squandered on research, lectures, campaigns, meetings, award ceremonies etc.. I have proven that with the budget NAS has it would be very very easy to do something worthwhile rather than just squander it - re my posting of 10th May this year - to which nobody from NAS can offer any reasoning why this would not be possible.

Quote-

92 million pounds is a phenomenal amount of money,where is it going - why does NAS think that having posh offices, meetings, speeches, award ceremonies, campaigns, research, 26 executives etc ect are of any benefit to those with ASD ? They are of no benefit at all and the only reason they do this is because they are all good 'cover' for lining their own pockets.

Here's what could be done with 92 million pounds.

That amount of money could buy a huge autism centre in 50 towns and cities around the UK and staff them with 10 full time staff - more than enough people to have daily courses, events, help, day centre etc...

Lets exagerrate beyond all proportions and say 50 million was spent on 50 centres, then each centre had 10 full time staff at £20,000 each (200,000 x 50 = 10 million) - now another 200,000 on each centre for supplies/decorating, furniture and office equipment,computers - this still only comes to 80 million and gives each centre 4,000 per week running costs.

Property 50m

Staff 10x50x20 = 10m

Supplies/decorating/equipment/furniture = 50 x 200,000 = 10m

Bills = 50 x 200,000 = 10m

Remember this is a gross exaggeration, and also the next year there won't be these costs because the property is all paid for.

Every single person in the UK with an ASD will be a short distance away from help, facilities, being lonely etc...

___________________________

Isn't this the way to help people with Autism ?

___________________________

If I set up a charity to feed the homeless and was given £5000 in donations then shouldn't most of that money go to buy food and pay for people to cook and deliver that food so that those the money is aimed at and raised for benefit directly from those donations ?

In the case of NAS it's as if they say 'right we've got £5000 lets have some meetings and conferences so we can talk about how we are going to feed the homeless, of course we need nice offices and we all need to get paid very handsomely for our services as well.'

You don't need to be a mathematical genius to work out that with this kind of structure then the money left in the pot to pay for the actual objectives of the charity diminishes.

Of course infrastructure is vital but it has to be accountable. Those at the top of NAS have been shown to have no morals or ethics by creaming off huge salaries so how can we have any trust in what they are doing on the whole ?

Corruption starts at the top, if those at the top are corrupt then you cannot have any trust in what that organisation is doing because they are the ones running that organisation.

If you look closely you will see whats' really happening. The chief executives salary of £140,00 has risen by £40,000 in 2 years, thats 40% - for this to happen means other executives have to vote, this raises further questions on morals because this is by no means morally acceptable.

To put it simply - Those at the top of NAS are pigs in a trough and you can't tell a pig in a trough to only eat a certain amount - it's no different to what has happened with the banks.

One of the research institutes is SCIE (Social Care Institute for Excellence). Their contribution is supposed to be on their website but I cannot readily find it. There is a section Improving Access to Social Care for Adults with Autism which has a subsection on "Awareness Training" Guide 43, which just gives six reasons why awareness training is key, but where is the training?

The Royal College of Nursing has produced a guide, or at least its one they had prepared in 2011 "The Autism Act 2009: developing specialist skills in autism practice" This looks really good until you realise it is mostly about people severely affected who do not have spoken language ability, which is important, but is this covering the whole range of adult experience.

RCGP (Royal College of General Practitioners) worked with a primary care research charity DIPEx, to produce "a training resource which is restricted to individuals registered with the RCGP" - with Government money! That's just an insult!

The Royal College of Psychiatrists provide a course with your peer group if you register for it (presumably pay for it and I guess "peer group" means fellow members). Government funded?

So how was the £500,000 spent? Beats me.....