Matthew Taylor has started an important debate on the nature and value of work. Dr Elizabeth Vallance FRSA, argues that ‘good work’ is a constituent of wellbeing and, just like the rest of us, those on the autistic spectrum have a right to enjoy it and its benefits.
Most of us spend a great deal of our time at work. So, what makes it feel fulfilling or frustrating, satisfying or exploitative, interesting or just plain boring? We work for money – to pay the rent and buy the groceries – but we also work to give ourselves a purpose and our lives a meaning. What we do, whether we like it or not, identifies us and defines us, not just to others but to ourselves. Work is, in this sense, existential.
What must it be like, then, not to be able to work, not to be given the chance to develop a sense of yourself as a contributing (not exclusively in the financial sense) member of the community? How debilitating it must be never to have that sense of agency, of doing something positive for yourself and others, that work brings.
As shown by the recent report of the National Autism Project, The Autism Dividend: reaping the rewards of better investment this is the sad fate of many people on the autistic spectrum, of whom there are some 700,000 today in the UK. Of those, only 16% are in full-time employment (and another 16% in part-time work). Yet more than three-quarters of those who are unemployed want to work. The social cost of this marginalisation of autistic people is enormous, reckoned as it is to be well over £20,000 a year per person in productivity loss, before any contribution to their quality of life, cognitive functioning, mental health or wellbeing is taken into account. Realising all this, when it came to power, the last government promised to halve the disability employment gap, so if employment is 80% for non-disabled people then halving the gap would mean increasing employment of the disabled from 47% to 64%. If autistic people are to benefit pro rata, this would mean at least doubling their number in work.
How could this be done? The government’s criteria for support are often couched in terms of learning disability or problems with mental health. But the majority of autistic people do not have a learning disability and while many suffer from mental health conditions (particularly anxiety) this is frequently a result of the difficulties they experience in a world that takes little or no account of their neurological sensitivities and difference. Thus, a first step in giving autistic people a chance to join the world of work, with all the advantages this brings in terms of personal wellbeing, is the understanding that autism cannot be subsumed under the heads of either mental health or learning disability. A priority should be to recognise a specific ‘autism identity’ in providing any services for autistic people. The development of this identity would include, for example, data collection (which is very incomplete at present) and training across all sectors.
But more than anything, autistic people need tailored support in getting into and remaining in employment. Sadly, at the moment, few of them (only around 10%) get it. Most people are not offered support that is specific to their needs. For example, those trying to remain in work may have all the mental capacity to do a very good job but find it impossible to travel to work on their own. Not to recognise individual needs is to set people up to fail.
The working environment may need to be adjusted (for example, by the toning down of bright lights, strong colours or loud noise, with all of which some autistic people find it impossible to cope). Training could be offered so that the wider workforce can understand the sensitivities of their autistic colleagues and not feel threatened by these differences but simply see them, as ‘another way of being’.
There is good evidence that employment support schemes are very effective in helping autistic people to secure and keep jobs. According to NICE (the National Institute for Health and Care Excellence) such support is helpful in terms of their own measures of health and social care effectiveness. The National Autism Project report goes even further. In looking at productivity gains for autistic people and their carers, it shows that at least one of these schemes, Individual Placement and Support (an intensive and individually tailored programme for getting people into work and supporting them there), is actually cost-reducing.
Employers need support too. The majority say they do not know where to get advice on the employment of autistic people. We need a national autism-specific employment programme, which ensures sufficient representation of autistic people themselves in its development and implementation to take account of their particular training and support requirements. The resulting cost reductions, which such a scheme would produce, could be re-invested in further employment schemes and financial inducements to encourage employers to hire more autistic people.
Work, we know, can be therapeutic for all of us. Those people on the autistic spectrum have much to offer the world of work to which they could and should have much greater access.
Dr Elizabeth Vallance is Chair of the National Autism Project