Asperger Syndrome - Key Information for the Workplace What is Asperger syndrome? Asperger syndrome (AS) is an autism spectrum disorder (ASD), one of a distinct group of complex neurodevelopment disorders characterized by social impairment, communication difficulties, and restrictive, repetitive, and stereotyped patterns of behavior. Other ASDs include autistic disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). ASDs are considered neurodevelopmental disorders and are present from infancy or early childhood. Although early diagnosis of ASD is the goal, many are not detected until later in life because of limited social demands and support from parents and caregivers in early life. The severity of communication and behavioral deficits, as well as the degree of disability, is variable in those affected by ASD. Some individuals with ASD are severely disabled and require very substantial support for basic activities of daily living. In terms of occupational relevance, AS is considered by many to be the mildest form of ASD and is synonymous with the most highly functioning individuals with ASD. Whilst individuals with AS appear to have normal life expectancy they have an increased likelihood of developing psychiatric conditions, such as major depressive and/or anxiety disorder, that may significantly affect prognosis. Two core features of autism are: a) social and communication deficits: The social communication deficits in highly functioning persons with AS include lack of the normal back and forth conversation; lack of typical eye contact, body language, and facial expression; and trouble maintaining relationships. b) fixated interests and repetitive behaviors: Fixated interests and repetitive behaviors include repetitive use of objects or phrases, stereotyped movements, and excessive attachment to routines, objects, or interests. Persons with ASD may also respond to sensory aspects of their environment with unusual indifference or excessive interest. Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group, being more common in males. No studies have yet been conducted to determine the incidence of AS in adult populations, but studies of children with the disorder suggest that their problems with socialization and communication continue into adulthood such as the development in some of additional psychiatric symptoms and disorders in adolescence and adulthood. 1
Centers for Disease Control and Prevention. Morbidity and Mortality Weekly Report, March 30, 2012.
Why is it called Asperger syndrome? Austrian pediatrician named Hans Asperger observed four children in his practice who had difficulty integrating socially. In 1944, he called the condition “autistic psychopathy” and described it as a personality disorder primarily marked by social isolation.
Asperger’s observations, published in German, were not widely known until 1981, when an English doctor named Lorna Wing published a series of case studies of children showing similar symptoms, which she called “Asperger’s” syndrome. AS became a distinct disease and diagnosis in 1992, when it was included in the tenth published edition of the World Health Organization’s diagnostic manual, International Classification of Diseases (ICD-10), and in 1994 it was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the American Psychiatric Association’s diagnostic reference book. As scientific studies have not been able to definitively differentiate AS from highly functioning autism, given that autism is defined by a common set of behaviors, changes that were announced in DSM-V (which took effect in mid-2013) represent the various forms under a single diagnostic category, ASD. What are some common signs or symptoms of Asperger syndrome? Children with AS may have speech marked by a lack of rhythm, an odd inflection, or a monotone pitch. They often lack the ability to modulate the volume of their voice to match their surroundings. For example, they may have to be reminded to talk softly every time they enter a library or a movie theatre. Unlike the severe withdrawal from the rest of the world that is characteristic of autism, children with AS are isolated because of their poor social skills and narrow interests. Children with AS will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion. They may approach other people, but make normal conversation difficult by eccentric behaviors or by wanting only to talk about their singular interest. Whilst many children with AS are highly active in early childhood, they may be awkward, poorly coordinated and may potentially developing anxiety or depression in young adulthood. Other conditions that often co-exist with AS are Attention Deficit Hyperactivity Disorder (ADHD), tic disorders (such as Tourette syndrome), depression, anxiety disorders, and Obsessive Compulsive Disorder (OCD). What causes Asperger syndrome? The cause of ASD, including AS, is not known. Current research points to brain abnormalities in Asperger syndrome. Using advanced brain imaging techniques, scientists have revealed structural and functional differences in specific regions of the brains of children who have AS versus those who do not have the disorder. Scientists have long suspected that there are genetic and environmental components to AS and the other ASDs because of their tendency to run in families and their high concordance in twins. This combination of genetic variations or deletions, in combination with yet unidentified environmental insults, probably determines the severity and symptoms for each individual with Asperger syndrome. How is it diagnosed? The diagnosis of AS is complicated by the lack of a standardized diagnostic test. In fact, because there are several screening instruments in current use, each with different criteria, the same child could receive different diagnoses, depending on the screening tool the doctor uses.
The diagnosis of AS and all other autism spectrum disorders is done as part of a two-stage process: 1. The first stage begins with developmental screening during a “well-child” check-up with a family doctor or pediatrician. 2. The second stage is a comprehensive team evaluation to either rule in or rule out AS. This comprehensive evaluation includes neurologic and genetic assessment, with in-depth cognitive and language testing to establish IQ and evaluate psychomotor function, verbal and non-verbal strengths and weaknesses, style of learning, and independent living skills. Are there treatments available? Given that there is no cure for AS and the autism spectrum disorders, the ideal treatment plan coordinates therapies and interventions that meet the specific needs of individuals. There is no single best treatment package but most health care professionals agree that early intervention is best. An effective treatment program offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the individual’s attention in highly structured activities, and provides regular reinforcement of behavior. This kind of program generally includes: • social skills training, a form of group therapy that teaches the skills that are needed to interact more successfully with others • cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious individuals to manage their emotions better and cut back on obsessive interests and repetitive routines • medication, if necessary, for co-existing conditions such as depression and anxiety • occupational or physical therapy, for those with sensory integration problems or poor motor coordination • specialized speech/language therapy, to help those who have trouble with the pragmatics of speech –the give and take of normal conversation, and • training and support, to teach behavioral techniques for use in a workplace setting and/or at home. Tips for the Workplace (from The National Autistic Society) Tip 1: Avoiding misunderstandings by increasing awareness There may be occasions where problems do arise for the person – particularly in social interactions, where communication can break down. If you become aware of any of these problems, try to deal with them swiftly and tactfully, and make colleagues aware of the potential for misunderstanding. If the person seems aloof or uninterested in talking to colleagues, or often says the 'wrong' thing, remember (and, where appropriate, remind colleagues) that this is probably unintentional and is likely to be due to the person's communication difficulties. If the person tries too hard to fit in and irritates colleagues by seeming to 'muscle in' on a conversation, be patient, and explain the boundaries if necessary. Remember that reinforcing the boundaries may not just be necessary for the person with autism – other staff may also need reminding that their attitudes may have a strong impact on the job performance of their colleague with autism. If the person becomes anxious for any reason, try to find out what is causing the problem. One-to-one sessions are probably the best situation for doing this. You may need to think laterally. For example, the stress may not be caused by a difficulty in the job but by a colleague not being explicit in their instructions, by things not working efficiently (such as a computer crashing), or by difficulties in getting to their work. Trying to think around the immediate issue may help, as well as supportively asking the employee specific (though not invasive) questions to try to get to the root of the problem.
Tip 2: Identifying challenges that an employee with autism might face and helping them to overcome them People with autism are often well qualified for work, and many are successfully employed in roles ranging from accountant to administrative assistant, and journalist to statistician. However, in order to achieve these successes, they need to overcome certain difficulties – particularly in the following three areas: • social communication • social interaction • social imagination. They may also have some difficulty in adapting their existing skills and knowledge to new tasks or environments. These difficulties can make the work environment hard for the person to deal with. They can also cause misunderstandings among other staff – particularly as autism is an invisible' condition. If staff are not familiar with the forms that autism can take, they may misconstrue the person’s behaviour as rude, insensitive or unfriendly. However, the good news is that there are plenty of simple ways to make sure that the person has the support they need and to ensure good positive working relationships. In terms of helping employees to overcome challenges facing an employee with autism there are two types of activities that employers can carry out to help overcome the challenges that an employee with autism will face: •
Formal activities - The formal support on offer ranges from job coaches to state-funded initiatives to help with extra costs such as adaptations in the workplace. Our Employment Training Service can provide more information about all the options available.
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Informal activities - In addition to providing formal support, there is much that you can do within your organisation to help make sure communication is clear and the necessary support is at hand. Many of these activities are extremely straightforward and easy to provide, and are detailed later in this article
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Make sure instructions are concise and specific. Try to give the person clear instructions right from the start about exactly how to carry out each task, from start to finish, as this will lay the foundations for good working practices. Don’t assume the person will infer your meaning from informal instructions – for example, rather than saying 'Give everybody a copy of this', say 'Make three photocopies of this, and give one each to Sam, Mary and Ahmed'. You may also choose to provide written instructions. It can be helpful to ask the person to repeat back instructions so you are sure they have understood. Ensure the work environment is well-structured. Some people with autism need a fairly structured work environment. You can help by working with them to prioritise activities, organising tasks into a timetable for daily, weekly and monthly activities, and breaking larger tasks into small steps. Some people will appreciate precise information about start and finish times, and help getting into a routine with breaks and lunches. Clarify expectations of the job. You may need to be more explicit about your expectations for a member of staff with autism. As well as the job description, you need to explain the etiquette and unwritten rules of the workplace. Make it clear that any adaptations for them in the workplace are there to help them keep doing their job well, not because they are not good enough.
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Provide sensitive but direct feedback. People with autism often find it difficult to pick up on social cues, so make sure your feedback is honest, constructive and consistent. If the person completes a task incorrectly, don't allude to, or imply, any problems – instead, explain tactfully but clearly why it is wrong, check that they have understood, and set out exactly what they should do instead. Be aware that the person may have low self-esteem or experience of being bullied, so ensure that any criticism is sensitive, and give positive feedback wherever appropriate. Regularly review performance. As with any employee, line managers should have regular one-to-one meetings with the person to discuss and review performance and give overall comments and suggestions. When managing a person with autism, brief, frequent reviews may be better than longer sessions at less frequent intervals. Help other staff to be more aware. Evidence shows that if the person with autism consents to their condition being disclosed, then providing colleagues with information and guidance on autism can benefit both parties. Sometimes an employee with autism may find it helpful to write a document for other staff explaining how their autism affects them and what kind of things they find hard. You may choose to distribute some NAS Employment Training Service factsheets or other resources to your staff, or to provide staff training in disability issues in general, or specifically in autism. Provide training and monitoring. When a person with autism starts a job or takes on new responsibilities, clear and structured training is invaluable. This can be provided informally on the job, by a manager, colleagues or a mentor, or may take the form of more formal training. Various organisations and schemes offer job coaches, and funding for this form of training may be available from the Department of Work and Pensions. In addition to training, the person may benefit from having a mentor or buddy in the workplace. Provide reassurance in stressful situations. People with autism can be quite meticulous, and can become anxious if their performance is not perfect. This means they may become very stressed in a situation such as an IT failure. You can help by giving concrete solutions to these situations – for example, by explaining "If the photocopier breaks, use the one on the third floor." Similarly, reassure the person that if they occasionally arrive late due to transport problems or other unpreventable factors, this is not a problem.
Tip 4: Be aware of Disability and the law The adaptations detailed in this article would be considered 'reasonable adjustments', which employers are required to make under the Equality Act 2010. For more information, on the Act, visit the Government Equalities Office or the Equalities and Human Rights Commission. Useful Resources 1. The National Autistic Society. Workplace assessments. http://www.autism.org.uk 2. National Institute of Neurological Disorders and Stroke (NINDS)) (31 July 2007). “Asperger syndrome factsheet”. NIH Publication No. 05-5624. http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm 3. University of Southern California. Autism, Asperger’s Syndrome and the Autistic Spectrum. http://www.aspergerssyndrome.org. 4. Royal College of Psychiatrists. Autism and Asperger’s syndrome: information for parents, carers and anyone who works with young people. http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/adhdinadults.aspx.
