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

Communication

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’.

Autistic experience

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.

Case study 1

Alex had worked at Sainsbury’s for a few years. One December he was packing the bags for a woman who had clearly done her major Christmas shop. Alex pushed one of her two trolleys to the car park, and proceeded to unload all of the shopping bags into the back of her car. He did a great job and the woman chose to express this by telling Alex what a star he was and how she would love to take him home with her. Alex missed her facial expression, the smile, the tone of her voice and the fact that this was, in some ways, a ‘throw-away’ compliment. He did not want to go home with her, and ran to the staff toilet in his beloved Sainsburys in floods of tears. The HR manager phoned to get support and got someone who Alex trusted down to the store to explain to him what this well-meaning woman really meant.

Skills

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

Case study 2

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

Employment

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.

Case study 3: Aspergers syndrome

Leigh is a 37-year-old man who was referred to OH after being off sick for six weeks with “work-related stress”. During this time he was newly diagnosed as having Aspergers Syndrome.

Leigh is a quality and date management administrator and was in post for seven months before his sickness absence. He is married with two children (one a few months old) and is a keen drummer, playing in a group. At work Leigh gets on with one other member of the team he works with, who is also a keen drummer.

Leigh and his wife, Felicity, agreed to come to the OH department together to discuss his rehabilitation and future work. At the meeting, the problems Leigh was experiencing were discussed, particularly in relation to his “Aspies”, as he likes to call it:

He had difficulty making telephone calls. He panics at the thought of making or receiving a telephone call, but has no problem with e-mail or text messaging.

He hates wearing a tie and finds it very constricting.

Time management: he can’t cope with panic situations when work is suddenly deemed to be urgent. He needs to have only planned and organised tasks.

He needs to be able to have “time out” when it all gets on top of him.

Leigh and Felicity were very keen for the rest of Leigh’s team to know his diagnosis so that they would understand how to react to him and why his role had changed. A case management meeting was arranged between OH, HR and Leigh’s line manager to discuss Leigh’s return to work and new working patterns.

Everyone was very supportive. His line manager suggested that Leigh would be able to do all of the team’s filing work, which he thoroughly enjoys and the rest of the team hates, and they would do all of the telephone work, which Leigh finds so difficult. Leigh was given permission to stop wearing his tie and to take a ‘time out’ if he felt the need. It was agreed that Leigh would not be given any urgent work or be required to remain at work late at short notice.

Once all this was arranged, Leigh had a planned phased return to work. This began with him working for only two hours each day, and gradually building up week by week. He also prepared a set of ‘Traffic Light Cards’ for him to use at his desk for his colleagues:

Red: Please don’t talk to me
Orange: Approach with caution
Green: I am fine.

Felicity, together with the OH nurse (OHN), then attended a meeting with Leigh’s manager and his team and explained a little about Aspergers to them. Felicity explained how it affected Leigh, particularly at work, and they had the opportunity to ask any questions. The team appeared to be hugely supportive and the meeting was very successful.

Leigh was seen by OH on a weekly basis throughout his phased return, and for the first few weeks the OHN telephoned Felicity, with Leigh’s full knowledge and approval. This was necessary because Leigh would tell everyone at work that everything was fine, whereas Felicity would be able to read the signs that he was having problems and would let OH know. Leigh was always told exactly what Felicity had said at the beginning of the meetings with OH.

The OH nurse said that she used to judge how he was coping by asking him what colour cards he had been displaying and how many ‘time-outs’ he had needed. She could also check whether he had bitten his fingers around his nails – a habit he fell into when he felt stressed.

In all it took four months to get Leigh back to his normal full-time hours, but apart from one small incident, in the three months since then he has been fine. His manager and HR say that he remains a valuable member of his team and is working well. He is still seen by the OHN as routine is so important to him and it would not have been good to suddenly stop seeing him. Now the time is gradually increased between appointments, and he knows that he can contact OH by e-mail should he feel the need.

Click here to test yourself on this article with our quiz.

Lynda Hawkes is an occupational health nurse with Abbott Burke Occupational Health Service.

References

1 http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=211 (accessed 5.10.09)

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

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5 http://www.efd.org.uk/media-centre/news/5686/disability-discrimination-cases-increase (Employers Forum on Disability – accessed 4.10.09)

6 Scott-Parker, S. and Zadek, S. Unlocking The Evidence: The New Disability Business Case. London. Employers’ Forum on Disability.

Continuing professional development: Autism in the workplace

Case study 1

Case study 3: Aspergers syndrome

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Constructing Better Health: Constructive strategy

Autism in the workplace: quiz

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