What do you know about autism? Perhaps you’ve heard that it’s some kind of brain condition that is linked to genius. Maybe you have a vague notion that it’s caused by childhood immunisations, or affects children not adults, boys not girls. Maybe you’ve read The Curious Incident of the Dog in the Night-Time and therefore know everything there is to know.
Today is World Autism Awareness Day, so I can’t help but give the topic some attention, especially as the Action and Research Centre here at the RSA is in the early stages of planning a piece of work involving improving opportunities for people with autism.
It feels timely to mention our intention to do this work, not least because of the emphasis in UN Secretary-General Ban Ki-moon’s message to mark World Autism Awareness Day 2013: “This international attention is essential to address stigma, lack of awareness and inadequate support structures. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential”.
Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential
A few facts, then. Autism is a lifelong developmental disability – on its own, it isn’t a learning disability or mental health condition, although some people with autism might also be affected by these. Autism is characterised by a ‘triad of impairments‘, which refers to difficulties with social communication, social interaction and social imagination. Importantly, it’s a spectrum condition, which means that the way the three types of impairment affect people varies, and rather than being a single fixed condition, it encompasses many different subgroups of experience.
There’s a lot that is still not known about autism – how it is caused, whether ‘cure’ is possible. There’s also a lot of controversy surrounding how these unknowns should be approached, including a growing movement that advocates for celebrating difference instead of looking for a cure. It can all get quite divisive, especially between parents who passionately believe, for example in behavioural modification therapies and those who prefer to find ways of accommodating autistic self-expression.
Until a few years ago, I didn’t know all that much about autism, and I certainly still wouldn’t profess to have much in the way of knowledge about it. But, I do have a bit of experience, as a result of having had the privilege of being an occasional support worker for children and young people with autism.
Through the independent support agency, Time Specialist Support, I’ve got to know a number of young people with autism and, for fear of descending into cliche, have learnt a huge amount as a result. Many of the important lessons haven’t been about the ‘problem of autism’ so much as the problems created by our social world and the norms we work within. Considering these things from the perspective of a child with autism throws up a gamut of frustrating and bewildering challenges, but when you look at it from the point of view of an adult, the impact of being different in an unforgiving society takes on even greater intensity.
when you look at it from the point of view of an adult, the impact of being different in an unforgiving society takes on even greater intensity
Only 15% of adults with autism have a job, although most are able and would like to work. The challenges involved in getting and doing a job are massive, but not necessarily because of the autism itself so much as the structures we take for granted as being integral and neccessary. It’s these challenges, and how employers can help diminish them that we’re interested in finding out more about at the RSA. It’s very early days, but, the Enterprise team and Social Brain Centre intend to collaborate to examine the processes of change that might need to happen in order to properly support adults with autism to work.
We are currently in early discussions with organisations interested in creating more autism-friendly work places, and helping autistic people realise their employment potential, to address the rather shocking unemployment statistics among this group. One of the options we are exploring is to run a challenge prize on this subject, combining a mixture of specialist expertise, entrepreneurial business models, design and technology.
There are a few examples of trailblazers in this area, but there are also plenty of disappointing and tokenistic attempts to employ autistic adults. As we develop our ideas and plans, we would very much welcome anecdotes, examples, comments and suggestions, so do get in touch with me or Julian Thompson.
Matthew Taylor has recently written several blog posts about the need to reconsider care. His suggestion that secondary school pupils should be required to do 100 hours of caring as part of a compulsory work experience programme seems like a good one for lots of reasons.
Acquiring the skills of caring early in life can only be an advantage, and raising the profile and status of care are important likely benefits of such a scheme. In general I think working with young people in schools is a valid way to try to achieve cultural shifts across a generation.
Shouldn’t offering care be something that we all do, in some form, and continue to do throughout our lives?
But I also think that it can be an effective strategy for sidestepping our own responsibility to contribute in areas that we recognise as important, but might not want to engage with directly. For those of us who left school years ago and are busy working full time, developing our careers, or in Matthew Taylor’s case, running the RSA, the idea of doing a bit of hands-on care as well might seem unfeasible, not to mention unappealing.
If we are in broad agreement with Matthew’s arguments, shouldn’t offering care be something that we all do, in some form, and continue to do throughout our lives? It occurs to me that there might be scope for companies and organisations to set up schemes in which employees are encouraged to offer their time as voluntary carers during work hours.
There is at least one precedent in which a company has decided to donate employees’ time to charities. The housing association, First Ark Group, has recently made the decision to donate 500 days of staff time to volunteer in local good causes. In the Guardian’s report, published on Monday, First Ark explain that they see their responsibility to the community as extending beyond doing their ‘bread and butter’ work in the best way possible. Being a force for good and building genuine connections with the community are also key priorities and donating staff days is one way of making these things happen.
There is plenty of evidence to indicate that volunteering is good for us. It’s not just good for our communities and for the organisations, individuals and groups who receive voluntary help, it’s also good for the volunteer. In addition to the fact that volunteering brings the opportunity to learn new skills and build different kinds of relationships, it’s also good for our overall wellbeing. It has the feel good factor.
So, if an organisation were to introduce a caring scheme, what would it mean for the workplace? I suspect it would be likely to increase morale amongst staff, raise pride in the employer, develop a reputation for being a socially responsible organisation. If staff throughout organisations, from chief executives to managers to cleaners were all expected to participate, it would give the entire workforce a shared experience and sense of solidarity.
What about the likely costs? How could any company afford to donate staff time to offering care? What would the impact be on individuals’ time management and workload? According to First Ark, these problems are easily ironed out quickly, and all it takes is a bit of adjustment. Tot up the amount of time staff waste at the water cooler, and we already know that being present at work 100% of the time doesn’t amount to 100% productivity.
It will be interesting to see how First Ark’s scheme works out, and whether they continue with it beyond this year. It seems to me that if we really care about care, we should be prepared to demonstrate that by actually getting involved ourselves. The way working life is structured makes it a tall order to expect people to volunteer to care in their spare time, but I wonder how prepared we would be to do it if it became part of our working lives.
A while back, I wrote here about a workshop organised by London-based RSA Fellows looking at issues affecting young people. One of the projects discussed then was a collaboration between two RSA Fellows who have been working together to pool their very different skills.
Matthew Gansallo from the Natural History Museum runs the Young Graduates for Museums and Galleries (YGMG) programme, which aims to open up access to employment in the sector. He’s collaborated with Rob Reed, a talented freelance illustrator, to produce a guide to London’s free museums and galleries that features writing from young people who have participated in the programme.
You can leaf through the booklet online at your leisure to read the contributors’ descriptions and see Rob’s fantastic illustrations. Matthew and Rob are keen to find sponsors who can help them get the booklet into print, and hope to do this while the spotlight is on London this summer, so if you’re able to point them in the right direction then do get in touch with Matthew by email.
I’ll leave you with Gabriella Quartin (one of the contributors) describing a venerable institution just up the road from the RSA…
I love paintings, I love photographs, and I love portraiture. The National Portrait Gallery is the only place where I can honestly say that walking into a room and having a bunch of dead people looking at me, doesn’t fill me with absolute fear.
Sam Thomas is the RSA’s project engagement manager. Follow @iamsamthomas on Twitter.
Last week was abuzz with commentary over the latest poverty figures from 2010/11, Labour’s last year in government. According to DWP’s own figures, relative child poverty had been halved from 3.4 million in 1998-99 to 1.4 million in 2010-11. Likewise, the number of pensioners in relative poverty is reported to have fallen by some 700,000 over the same period. Notwithstanding these notable improvements, everybody knew long in advance that Labour was never going to reach its ambitious target of halving child poverty by 2010. Thus, as soon as the figures were announced and this failure finally confirmed, commentators from all sides were ready to throw in their thoughts about why success never materialised.
Enter Ian Duncan Smith. In a speech last Thursday, he praised Labour’s intention of raising people out of poverty but criticised the means by which they sought to do so. His main criticism was as follows: giving people just enough income in the form of benefits so that they fall over the median poverty mark is no way to address poverty. Poverty should instead be tackled at its source, most notably by addressing worklessness. As IDS argued:
“With the right support a child growing up in a dysfunctional household, who was destined for a lifetime on benefits, could be put on an entirely different track – one which sees them move into fulfilling and sustainable work. In doing so they will pull themselves out of poverty.”
But therein lies the rub – as is becoming increasingly clear, work in its current form simply isn’t giving people the income or the wider opportunities to live the lives they want to lead. The most striking figure from last week’s data release is that three fifths of the households in relative poverty are ones where at least one adult is working. Put another way, this means there are now more working households in poverty than there are workless ones. Indeed, over 60 per cent of children who are in poverty live in working households. Only today, the Guardian released findings from research it commissioned which show that 2.2 million children live in families “teetering on an economic cliff-edge”, even though at least one person in the household is earning an income.
The reason why in-work poverty has become such a mammoth problem is in large part down to declining levels of wage growth. The Institute for Fiscal Studies reported this month that in the three years leading up to 2010-11, average household income (pre-tax and benefit) fell by some 7 per cent in real terms. Last year’s 3.1 per cent fall in median income was said to be the largest one year fall since 1981, and puts median income in 2010-11 on a par with that of 2004-05. As the IFS put it, this is “undoing five years of slow growth.” Yet this is not just a new trend. A Demos report published last year by John Knell and John Philpott highlighted that the share of national income received in wages relative to profits has been falling since the mid-1970s. Whereas wages once represented 65 per cent of GDP, they now account for only 53 per cent.
What all of this means is that for many people right now work simply does not pay. Therefore pushing people into employment is never going to be enough on its own to make a sizeable dent in poverty figures. It won’t even help us to maintain the gains achieved under the last government. This dilemma reveals a deeper contradiction at the heart of the government’s anti-poverty strategy. On the one hand, they position “fulfilling and sustainable” work as a route out of poverty, but on the other they are making it increasingly difficult for those at the bottom of the pyramid to secure such staid employment, whether by increasing the ease by which firms are able to fire their workforce or by introducing mandatory work experience which in turn reduces wages and hours for the wider workforce. Work is at one and the same time being lionised and devalued; it is being held aloft as the solution to our problems, while simultaneously being chipped away at from below.
If the government is serious about positioning work as the main route out of dependency and poverty then concrete steps need to be taken to make work pay. As Matthew Pennycook from the Resolution Foundation argues, given that working tax credits are now all but off the table this means that we will increasingly have to rely on decent wages to prevent those in employment sliding into working poverty. The obvious solution is to implement some form of Living Wage system; if not a universal one then at least tapered for different sized businesses and tailored for different geographical areas. For those who argue that companies can ill afford to pay an increase in labour costs, research by the Resolution Foundation shows that for large companies at least, the average increase on their wage bill would amount to as little as 1 per cent. Yes, clear thought would need to be given to smaller companies who could not realistically shoulder the extra expense, but this shouldn’t stop us from pursuing the Living Wage in some form or another. If we want to live in a society that is fairer and more equal – one in which a decent day’s work is met with a decent day’s wage – then we can’t afford not to.
I’ve had a great response so far to my post about mental health and employment on Monday, and some important issues have been raised. One of the comments made directly in response to the blog was particularly challenging, and pointed to some important issues which I have tried to tackle in some of my previous work on anti-stigma education.
The commentator suggested that people with experience of mental illness being unable to get secure employment leads to them setting up in self-employment and drew attention to the downsides of this. It sounded to me as though the writer might have had first-hand experience of dealing with a freelancer who had continued to work during an episode of acute mental illness. The “ranting paranoid accusations” sound very difficult to deal with indeed, and it is exactly this sort of troubling behaviour that employers presumably have in mind when they say wouldn’t employ someone with a mental disorder. The response also drew attention to the lack of support available to self-employed individuals experiencing mental health problems and the damage that can be left behind for clients and business partners who “tried to work with them in good faith.”
Interestingly, I had a respondent write to me directly (rather than in the public forum) expressing horror at what they saw as inherent stigma in this analysis. However, despite my interest in reducing prejudice and discrimination against people with mental illness, I do not think that this is an instance of such prejudice. In fact, it very helpfully draws attention to what I see as the real nub of the problem in terms of discrimination and stigma in the context of mental illness.
for individuals who experience it, mental illness is not a constant, unchanging feature
Discrimination is treating someone unfairly on the basis of characteristics which ought to be irrelevant. We are familiar with the idea that not employing someone because of their gender, race or sexuality is unfair, and amounts to sexism, racism or homophobia. It could be assumed that comparably unfair treatment of a person with a mental illness is the same. However, I think that mental illness is actually a special case, and differs from gender, race, or sexuality in the way in which discrimination functions in relation to it. It is different in that, for individuals who experience it, mental illness is not a constant, unchanging feature. Forgive my massive oversimplification, but at the simplest level, if you are a woman, you are a woman every day – your ‘womanness’ is relatively fixed and definite; likewise with skin colour or sexuality.
If you have a diagnosis of a mental illness, your status is not only likely to be, at some level, contested, but also fluctuating, transient and shifting. There is the issue of the hugely various types of mental illness you may have. Furthermore, no matter what your diagnosis, it is likely that you have had periods of your life when you have been less able to function than others, along with periods of your life when you are entirely able to function. In other words, the way in which the mentally ill part of a person impacts on their life is inconsistent.
What this means is that there are times when it is appropriate and right to treat a person with a mental illness differently to someone who does not have a mental health problem – for example when they are currently in throes of madness ‘proper’.
What this means is that there are times when it is appropriate and right to treat a person with a mental illness differently to someone who does not have a mental health problem – for example when they are currently in throes of madness ‘proper’. However, a person with a mental illness who is free of symptoms and yet is unfairly treated differentially is therefore being subjected to discrimination in the sense that they are being judged on the grounds of characteristics which ought to be irrelevant.
The result of this is that the idea of ‘stigma’ in relation to mental illness simply does not make sense as a fixed dimension of people’s attitudes. The interaction between the fluctuating, changeable nature of mental illness along with people’s context-specific, plural position taking in relation to it is characterised by too much subtlety and nuance to be rendered simply in terms of stigma.
This is kind of complex, and it’s something people might only really come to understand through personal experience – either of going through some kind of mental illness themselves or by being close to someone who has. Another respondent to my earlier post told me about being a manager of staff with mental health problems and regarding them as “weak willed fools”. It was only after experiencing a breakdown himself that his perspective changed and he seemed clear in his conviction that without this personal experience he would never have shifted his view
There is no substitute for first-hand experience. Indeed, one of the insightful fourteen year olds who participated in some research I did said to me, “You can’t know what it’s like unless you’ve been through it yourself. I could talk to someone with schizophrenia, or whatever, all day long, but I still wouldn’t know what it’s like.” But, that’s not to say our capacity for empathy cannot be enhanced.
I’m convinced that attitudes to mental illness in the workplace can be improved, but that only through greater understanding of personal experiences, including those which have been troubling. Most crucially, the difference between a person with a mental health problem who is currently acutely unwell, and someone with a diagnosis but no impeding symptoms is vital to understand if progress is to be made in managing mental illness and employment.
Whose responsibility is it to support people with mental health problems in/to employment? Later this month, the OECD will publish what looks like an important piece of work examining the myths and realities about mental health and work. The issue is a spectacular tangle of grey areas, discrepancies and imprecision.
There’s the matter of looking after the mental health needs of those currently in employment. There’s the challenge of supporting people with long term mental health conditions in getting off benefits and into work both sustainably and without exacerbating their illness. There’s a complex relationship between recovery (which in the case of mental illness is rarely a linear process), therapeutic occupation and the pressure of responsibility.
There are underlying problems around the hindering of aspiration and ambition as a result of the onset of mental illness. There’s the confusing business of common mental disorders, such as anxiety and depression, and severe mental disorders, all of which can be chronic, transitory and, very likely, fluctuating in degree of severity.
The very idea of mental illness takes us to extremely uncomfortable places
Dealing with these challenges falls neatly between health and social care provision, the welfare system, and the big bad world of the free market. The very idea of mental illness takes us to extremely uncomfortable places, and the fact that employers don’t really want to know and employees don’t really want to talk about their mental health is only one indication of the deep social stigma that still exists.
So even though we know that the costs of mental ill health are enormous (estimated at as much as 4% of GDP in the EU), it does not seem to be an issue that people outside the mental health sector are engaging with very seriously. Employers and corporations are, so far, not a real partner to the mental health care system.
The government is ploughing money into the Work Programme, which pays specialist providers to get people with long term conditions into work, but without any kind of systematic approach towards employers and the workplace. The fact is that employers do not like the idea of mentally ill staff (only four in ten employers say they would hire someone with a mental disorder) and we cannot simply sidestep or overlook this when trying to encourage people off benefits and into work.
The fact is that employers do not like the idea of mentally ill staff and we cannot simply sidestep or overlook this when trying to encourage people off benefits and into work.
And, although there is overwhelming evidence that employment is an important element of continuous, on-going recovery from mental illness, the mental health care system takes minimal responsibility for the employment status of its patients. Part of the problem here is that so much of the mental health care system is geared up towards severe mental disorders, and a long held lack of expectation of recovery. Once a person falls into the system of mental health care, the path towards becoming a career mental health patient is a lot easier to fall onto than any alternative paths.
The OECD’s report will argue that policy can and must respond more effectively to these challenges, but to do so will require a co-ordinated approach and a multi-level shift. This will require a level of integration that is hard to see emerging from what the coalition is up to.
For example, we know that prevention and early intervention are crucial, so we need to find ways to join up vocational support with first line health care response to mental distress. To make working life compatible with long term mental disorder, there is a need to stop trying to shoehorn people with mental health conditions into inflexible and conventional models of working and encourage employers to accept variations in people’s productivity, and a more diverse and creative view of what it means to get the job done.
Within all of this I’m sure there are real opportunities for social enterprises to play a role in bringing about shifts not only in attitudes to mental health at work, but also in terms of matchmaking people with employers and helping employers to respond proactively to the mental health needs of the workforce. The Social Brain and Enterprise teams at the RSA are currently interested in exploring this area, so if you’re working in this space or have ideas you’d care to share, do get in touch.
Having only just started as an intern at the RSA, working across the Whole Person Recovery Project and Recovery Capital Project, I find myself constantly burdened by nerves, an inability to remember anyone’s name, and only a small amount of specialised knowledge about the substance misuse field. It can sometimes feel like I’m in over my head.
In a strangely reassuring way however, I don’t seem to be the only one.
Last week I attended the ‘After progress2work’conference at London’s Guildhall hosted by Inclusion. Its focus was the future of drug policy in the current economic climate and the future of the progress2work scheme.
As many of you may already know, the Drug Strategy 2010 and the Ministry of Justice Green Paper ‘Breaking the Cycle’ both emphasise employment as key in contributing to a sustained recovery from drug and alcohol dependency.
With this in mind, the government has set out a number of ways in which individuals who take steps to address their dependence will be supported in a way that will meeting their personal needs but with a particular focus on rehabilitation through employment.
This makes some sense. There is a great deal of evidence to suggest that drug and alcohol use and unemployment are correlated. For instance, in 2010, The Prince’s Trust YouGovYouth Index found that one in ten young people felt that unemployment drove them to drugs and alcohol. One of the young people – quoted on the right – involved in the Whole Person Recovery Report helps to illustrate the point further.
Now, all of this is well and good, and it was inspiring to see a good number of voluntary groups, community groups, and charities come together to discuss the implementation of the government’s plans. But the big elephant in the room continues to be ignored (although it was pointed at in the conference discussions): what jobs?
We’ve heard recently about the possibility of a double-dip recession, with the jobless level expected to rise during 2011 and The British Chamber of Commerce’s chief economist, David Kern, similarly warned that unemployment would rise by 100,000 to 2.6 million over the next year.
It’s true that for many, employment is a fantastic way of supporting and sustaining recovery from problem drug or alcohol use. Yet I wonder about the utility of putting so much emphasis on employment as the crucial indicator of successful recovery. Shouldn’t the emphasis be on supporting personalised routes to a self-defined end point? And rather than narrowly aiming for jobs shouldn’t we be focussing on supporting people to become job-ready and develop the entrepreneurial skills that are becoming increasingly necessary when job opportunities are shrinking?
The Chancellor was on the news today, describing how he wants to save money by ending the “lifestyle choice” of living on benefits.
He’s not the first politician to set this as a target, and he probably will not be the last.
Why have they been so unsuccessful at getting more people into work? It might be that there simply aren’t the jobs, it might be that we are at or around the natural rate of unemployment and any effort to get more people into work would actually force up prices or it might be that the benefit system is keeping people out of work.
Another, perhaps less obvious reason, is to do with the connections which unemployed people have. Unemployment, especially long term unemployment, is geographically concentrated, although perhaps not as much as some people suggest.
A recent paper found that people who have strong family ties are more likely to be out of work or in lower paid work than those who are less well connected. And we know from our work in New Cross Gate that a certain percentage of unemployed people, are not connected to people who are in work and do not know anyone who occasionally hires people.
This can lead to people staying unemployed both because people often get work through ‘weak ties’ and because people can stop thinking that it is normal to be in work.
This second point is deceptively complicated. It could be seen as an attack on what Charles Murray terms ‘the underclass’. However, from a policy-maker’s point of view, it could just as easily be seen as a prompt to create spaces in which people in and out of work will meet. Creating spaces such as this is very tricky. It’s easy enough to create a support group or an exclusive club but creating a space in which people of many different backgrounds actually mix with each other is far harder.
Somehow, I find it unlikely that George Osborne is proposing that the government support a wave of new and popular social clubs, but perhaps that’s what he should be doing…
The RSA event advertised in our last post, Can Online Markets Tackle Poverty? was a rallying cry for Whitehall to get over their fixation with creating ‘jobs’ and start focussing on using technology to develop existing economic activity.
As Jerry Fishenden(Centre for Technology Policy Research) put it: “The state’s idea of what a ‘job’ is is constraining productivity” and Wingham Rowan(Silvers of Time Working) added that “local authorities are beaten up by Whitehall on job creation” (thereby constraining attempts to create more flexible labour markets).
The problem is not jobs as such, but untraded resources, especially time. The focus should be on how we better harness and develop existing economic activity and help people earn money, rather than how to create ‘jobs’.
So how can we help people earn money? Who are ‘they’, and what is stopping them? It seems they tend to work at the lower end of the economic spectrum, functioning in what Wingham Rowan called unfocussed markets, where the conditions for the demand and supply of labour are fuzzy and changeable, and buyers and sellers can’t find each other(the exact opposite of the more efficient targetted markets- the kind that traders operate in).
Think baby sitters, people wanting to borrow a bike, others wanting to borrow a tenner to pay back the next day etc. There is lots of such ad hoc economic activity.., things hired, time offered, money lent, and many can do work of this nature who can’t fit in to a job structure.
The solution lies in new technology that we know to work well calledNEMs: National E Markets. Think Ebay writ large and better regulated. Slivers of Time working is an exmplar in this field, but merely one example of a much wider and still under-utilised phenomenon.
I liked the example given by Wingham Rowan:
If you suddenly need a baby sitter, you might be horrified of looking for one online, but you don’t need to merely post an add on a random website. Instead you have access to a focussed market where you can see existing baber sitters, be certain that they have the relevant CRB and ISA checks completed, have a certain amount of experience and references etc. You can aslo narrow your search to find baby sitters who have worked in your area, or with people you know. The technology can do all this hard work for you, and tell you exactly how much it will cost. You get meaningful data immediately- the kind you need to take a quick decision, just like traders do all the time… so, strange though it may seem, NEMs become a very safe way to get a baby sitter. And of course, from the baby sitter’s perspective, they are not locked in, not forever doomed and blessed to have the ‘job’ of being a babysitter, but being one as and when it suits.
How can such a system we brought into being? The most likely scenario would be that, as with the National Lottery, the private sector would fund these markets if Government could put the conditions in place.
The technology is not the problem, the problem is political will and bureaucratic inertia. The British welfare system has a binary view of being in work or out of it. If you can only earn £25 a week before your benefits are cut, you are implicitly encouraging people to work in the informal economy, or to put it more sharply, the black market. (And in this respect, Mathew Taylor commented that while working in goverment he noticed the strange reluctance of politicians and civil servants to even talk about the informal economy; “nobody wanted to go there”.)
The Government needs to work much more with the natural behaviour of people. Selling time and possessions, rather than products as such, is very difficult to regulate, tax etc, but it can and should be done.