Autism remains a disability or difference shrouded in confusion and mystery. A percentage of the population above a certain age remember Dustin Hoffman in the film Rainman. But professionals working in the field of autism never find it an easy task to clearly define what makes autism a distinct disability, and this is complicated by the simple fact that everyone on the autistic spectrum is an individual.
However, the National Autistic Society (NAS) website provides a good starting point: “Autism is a lifelong developmental disability. It is part of the autism spectrum and is sometimes referred to as an autism spectrum disorder, or an ASD. The word ‘spectrum’ is used because, while all people with autism share three main areas of difficulty, their condition will affect them in very different ways. Some are able to live relatively ‘everyday’ lives; others will require a lifetime of specialist support.”1
People on the autistic spectrum say the communication process, both verbal and non-verbal, is confusing for them. Imagine finding yourself in an alien or foreign culture where you do not understand the language, social conventions or what is expected of you. Inevitably, you would make mistakes. You would also understandably be fearful of the people in this alien culture who appear to be masters of their communication process.
There seem to be three main areas of the communication process that people on the autistic spectrum find more complex:
They can have difficulties with social communication. This will include reading body language, facial expressions and tone of voice. There may be many meanings of a raised eyebrow (or, more complex, two raised eyebrows). And the meanings will differ from culture to culture. Non-autistic people within a culture become proficient at interpreting the meaning behind a raised eyebrow and take a host of other information on board when reacting to the person who is raising their eyebrow. It should not surprise us to find that some people find it more challenging to absorb and react to this information and sometimes do not read anything at all into a raised eyebrow.
People on the autistic spectrum appear to find social interaction difficult. They may find it a challenge to express their emotions and have difficulties understanding the feelings and emotions of others. The ‘nitty-gritty’ of the communication process – how far to stand from the listener, volume of speech and turn-taking – are complex processes the non-autistic person has learned about from an early age.
The ‘theory of mind’ appears to be much more difficult for the person with autism, and can lead to them withdrawing from social contact. We ‘survive’ to a large extent by being able to ‘read’ the people we are talking to. We can place ourselves in the position of the other person. This social imagination allows us to understand and predict other people’s behaviour, make sense of abstract ideas, and imagine situations outside our immediate daily routine.
Put simply, autism is a different culture from our own. Each person on the spectrum has his or her own version of the autistic culture, and the best advice is to get to know each one as an individual. They are not ‘sufferers’.
What is common to a lot of people on the spectrum is that their education, particularly within a mainstream school, was a painful chapter in their lives. Mainstream schools seem to find it a challenge to accommodate children and teenagers on the spectrum. The ‘teenage’ years can be a social nightmare for all, but it is especially so for those on the spectrum.
Claire Sainsbury’s book, The Martian in the Playground, contains some disturbing first-hand accounts of how it feels to be autistic: “There are emotional scars from all the years of teasing that I endured. My self-esteem suffered as a result”, and “I got hanged (with wire round the neck) and other kinds of stuff what the staff called mild teasing. Someone ejaculated over my trousers in front of the whole class.”2
An important factor in school, and later on in employment, centres on people who have gained a little insight into autism and who can provide skilled autism-specific support and back-up. Finding employers that would offer weekly work placements to school children was, and still is a struggle, according to a survey in 2001 by the NAS. Lack of knowledge about autism remains widespread among the population and employers are not exempt from this. “Only 6% of all working-age adults with an ASD have full-time paid employment, and only 12% of those with high functioning autism have paid jobs,”3 according to NAS research.
Although there are inherent weaknesses in generalisations, the range of skills witnessed by organisations dealing with the autistic spectrum included:
- Liking and need for routine
- Liking and need for repetition of what others might consider boring or mundane tasks
- If happy, they are punctual and reliable
- Coffee break of 15 minutes – will not take 16 minutes
- Visual and memory skills in potentially key areas
- Polite and respectful to customers and colleagues
- Dislike of making mistakes
- Will be at work despite having flu or a broken leg
- Will rigidly apply health and safety rules.4
Lee had several placements with the project while still at college. These included office work at Meadowhall and a spell in a Boots warehouse. When he began an NVQ Level 2 in retail, the project was able to set up a placement for Lee at Argos. While still at college, Lee gained paid Christmas work at the store.
When his course was completed, Lee gained paid employment at Argos and has never looked back. His only contact with the project now is through phone calls and meeting on our social evenings together. His aim is to become a section manager or supervisor. As he says in an article on our website: “I have gained a lot from being on the project. I have matured and grown in confidence. My communication skills have improved and I find it easier to talk to people.”
His manager at Argos is delighted with Lee’s progress. “The difference in his confidence is overwhelming. The response has revitalised everyone’s enthusiasm seeing such an advancement in someone’s learning,” he says.5
King Ecgbert School, the Autism Centre, wanted to establish a base at a large shopping and entertainment centre, and the biggest one in Sheffield is called Meadowhall. With a little help from Sheffield MP David Blunkett, they secured a meeting with the director of Meadowhall.
Like many shopping centres, Meadowhall is not simply a collection of retail outlets; it has a cleaning contract, catering areas managed by the centre, and other ‘back-room’ jobs. Some of the trustees of King Ecgbert School were invited by the director to experience some of these jobs. In 2006, a staff team was set up based at Meadowhall, funded by the director of Meadowhall, who donated the equivalent in kind of about £10,000 per annum together with funds from the National Lottery. From that, a number of people were able to undertake employment at the centre, and today there are now enough case studies to fill a large book.
People with any additional needs face huge barriers in the world of work and it is projects like this one, that carry out the ‘nitty-gritty’ day-to-day work on the front line, that will make the biggest difference. Employers must make reasonable adjustments for an employee on the spectrum; however there are so few people with autism in work that this has to be done on an individual basis.
Access to someone who has specialist knowledge of autism is the key to success. Many employers subscribe to the Employers Forum on Disability, and it is disappointing to see them report an increase in disability discrimination cases in 2009. In 2001, the same organisation produced a report called Unlocking Potential.5 In it, they reported:
- Disabled people are as productive and as reliable as any other employees
- In living their day-to-day lives, many disabled people develop transferable problem-solving skills that are invaluable in the workplace
- Disabled people in work tend to have better attendance records, stay with employers for longer, and have fewer accidents at work
- The spending power of disabled people and their families in the UK is estimated at an annual £45bn.6
When working with employers and people on the spectrum, it can be frustrating to face these barriers, misconceptions and discrimination. There are few employment agencies that focus specifically on autism, but there are organisations in every locality which can provide guidance and information on autism for OH professionals. Other professionals have to work in partnership with people who have some knowledge and understanding about autism. Unless they have prior experience and knowledge, OH professionals need to seek out the autism specialists in their locality to work together to pursue the best possible outcome for an individual on the spectrum.
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Lynda Hawkes is an occupational health nurse with Abbott Burke Occupational Health Service.
2 Sainsbury, C. (2000) Martian in the Playground: Understanding the Schoolchild with Asperger’s Syndrome. London: Lucky Duck Publishing Limited.
3 Barnard J. et al (2001). Ignored or ineligible?: the reality for adults with autism spectrum disorders. London: The National Autistic Society.
4 Hesmondhalgh, M. (2006) Autism, Access and Inclusion on the Front Line. (pp74) London. Jessica Kingsley Publishers
6 Scott-Parker, S. and Zadek, S. Unlocking The Evidence: The New Disability Business Case. London. Employers’ Forum on Disability.