Autism Spectrum Disorder
What is autism?
Autism is a neuro-developmental disorder, affecting around 1% of the population. Autism is highly variable in its presentation. People with autism differ from one another in how they relate to the world around them and in the severity of the difficulties they experience.
This variability is reflected in the terms we use to describe autism. Autism Spectrum Disorder (ASD) is an umbrella term for a number of different forms of autism, including Childhood Autism and Asperger Syndrome. On this website the term ‘Autism Spectrum Disorder’ or ‘ASD’ is used to encompass all forms of autism.
All types of Autism Spectrum Disorder have several features in common. ASD is a lifelong condition that affects how a person relates to other people and how they make sense of the world around them. Difficulties associated with ASD will be evident in childhood, even if no diagnosis is given at that time. Many people are now diagnosed with autism in childhood. The general consensus is that it is most helpful if people are diagnosed when they are younger, as appropriate advice and support can then be offered to children, their families, and schools. However, for some people, the presenting difficulties may be subtle or more complex and in such situations diagnosis may not be made until adulthood.
People with autism experience difficulties in the following key areas:
- Social communication – difficulties may include using and understanding verbal and non-verbal communication (including words, gestures, facial expressions and tone of voice)
- Reciprocal social interaction – difficulties include recognising and understanding your own and other people’s feelings and intentions, and managing social exchanges
- Social imagination – difficulties may include being able to adapt your behaviour to the situation, difficulties attributable to inflexible, restricted or repetitive patterns of thinking or behaviour, and difficulties coping with change
Autism can create significant challenges for people, their families and friends.
People with ASD experience problems with social interaction. They may find it difficult to use and to understand non-verbal communication, such as gesture, facial expression and posture, and may find it difficult to use eye contact to regulate interaction. Often, people with ASD tell us that they find it difficult to establish and maintain relationships with other people, or they may find it very difficult to join in with groups of people. Some people with ASD are not particularly motivated to interact with other people. When engaged in social exchanges, people with ASD may find it difficult to know what to say, or how to respond to other people. Difficulties like these can lead to some people feeling anxious about interacting with other people or becoming socially isolated.
Communication can also be an area of difficulty for people with ASD. Some people fail to develop meaningful spoken language. For others, the level of difficulty is subtle. For example, some people may speak very fluently but have a very narrow range of conversational topics, or have difficulties understanding and using abstract or ambiguous language such as metaphors, or sarcasm. Again, for many adults with ASD, these difficulties can make social interaction and communication more challenging.
The third area of difficulty experienced by people with ASD relates to flexibility of thought and behaviour. People with ASD may experience difficulties because of their level of adherence to repetitive activities or routines. They may find change to routines or planned activities very difficult to accept and tolerate. They may have restricted interests, which can be particularly intense. Some people may show repetitive motor mannerisms, such as hand-flapping or rocking.
Some people with ASD experience sensory difficulties. They may find it very difficult to tolerate certain types of noise, certain visual stimuli (e.g. bright overhead lighting), or certain smells, tastes or textures. Exposure to such stimuli can cause people to feel very overwhelmed, and they may struggle to cope in environments where such stimuli are present. They may seek to leave, become distressed and upset or angry, or freeze.
Many people with ASD also describe difficulties with organisation, planning and decision-making. They can find it difficult to attend to activities, or to switch attention between activities.
Taken together, these difficulties can make the demands of everyday life very challenging for people with autism. Some people do learn to negotiate many social situations and social exchanges, but may find the process of doing so exhausting and, at times, overwhelming.
People with autism can also experience difficulties due to mental health problems. Indeed, there is evidence to suggest that they are more likely than others to experience such problems. This is understandable when we consider the additional challenges they often face in everyday life. People with ASD may experience any type of mental health problem, including anxiety, obsessive compulsive disorder, depression and eating disorders.
Approximately 30% of people with ASD also have a diagnosis of learning disability. People who have learning disability in addition to autism are likely to need some support to manage the tasks and activities of everyday living. In most circumstances, adults who have a diagnosis of learning disability will access support, including diagnostic assessment for autism, through local specialist services for people with learning disabilities.
Of course, some people with autism find that their way of viewing the world can be advantageous in some settings. Some people with autism report that their ability to focus intensely on a topic of interest can be very useful. Similarly, there are tasks and activities in which a logical, systematic approach to problem-solving is very valuable.
ASD is a pervasive disorder and, as such, usually impacts on multiple aspects of everyday life. There is no cure for ASD, but support and information can help people to manage the condition. The support required varies from person to person according to the difficulties they experience. The difficulties experienced in each domain may also increase or decrease over time, depending on the person’s circumstances.
Understanding the condition can be very beneficial for people with ASD. Knowing why certain situations are stressful and more difficult can help people to prepare for particular experiences or events, and can help them to consider the coping strategies they might employ to manage the situation. Structure and routine can be very useful for people with ASD. Some people find it very helpful to plan their days and weeks carefully. Some people also find it helpful to intersperse periods of social activity with periods of time in which they can be alone, to rest or enjoy an activity they find relaxing. Learning how to recognise and manage stress and anxiety can also be very useful.
If you have ASD and are experiencing difficulties with anxiety, depression or other mental health problems, it is important to seek support with these difficulties from within mental health services. There are a number of suggestions for sources of support on this website.
Who can help?
NHS Greater Glasgow & Clyde
Pathways to diagnosis
If you think that the difficulties you are experiencing might be due to autism spectrum disorder, you should discuss this with your GP. If you are already linked with another mental health service, you could discuss it with professionals in these services too. It can help to consider the following questions before you approach these discussions:
- What difficulties do you experience in social interaction with other people?
- What difficulties do you experience in communicating effectively with other people?
- What difficulties do you experience because of inflexible, or restricted, patterns of behaviour (for example, consider any unusually intense interests, hobbies or routines, or difficulty coping with change)
- Is there evidence of difficulties in these domains in both childhood and adulthood?
You may find this questionnaire, known as the AQ-10, helpful in considering whether the difficulties you experience may be attributable to ASD.
Your GP, or other healthcare professional, will help you to consider whether it would be appropriate to pursue diagnostic assessment. If you are already involved with mental health services, it may be that professionals within these services will be able to offer the diagnostic assessment. Alternatively,your GP, or mental health professional, may refer you to the NHS GG&C Adult Autism Team for assessment.
The NHS GG&C Adult Autism Team works to support adults (over eighteen years old) with an autism spectrum disorder (ASD). The team offer a diagnostic service, and post-diagnostic information and support for people who have received a diagnosis. The team also offers training and support to other services working with people with ASD.
While the diagnosis of ASD may be helpful, if some of the difficulties you experience are due to co-existing mental health problems, it is likely that you will require support to manage these too.
Not everyone who experiences difficulties that may be associated with ASD wants, or needs, to pursue a formal diagnosis. For some people, gathering information, particularly with regard to strategies for coping and self-management, will be sufficient.
Support after diagnosis
If you have already received a diagnosis of ASD, the NHS GG&C Adult Autism Team (AAT)can support you to increase your knowledge and understanding of the condition, and develop strategies for coping with and managing the associated difficulties. This support is usually offered in a group setting. You can ask your GP, or another mental health professional, to refer you to the AAT for this type of support.
If you are already receiving support from a mental health service, this may continue after diagnosis according to your assessed needs.
Other sources of support
Autism is a pervasive condition, which can impact on many aspects of everyday life. As such, an NHS-based service is not always the best service to respond to all difficulties associated with ASD. Some difficulties may be better addressed by social work services, or third-sector organisations. Some suggestions for helpful organisations are provided below.
Scottish Intercollegiate Guidelines Network (SIGN). Assessment, diagnosis and interventions for autism spectrum disorders. Edinburgh: SIGN; 2016. (SIGN Publication no. 145). [June 2016]
- ‘The autistic spectrum: a guide for parents and professionals’ by Lorna Wing(ISBN#1841196746)
- ‘Asperger’s syndrome: a guide for parents and professionals’ by Tony Attwood(ISBN#1853025771)
- ‘Autism: the facts’ by Simon Baron-Cohen and Patrick Bolton (ISBN#0192623273)
- ‘Asperger’s and Girls’ Featuring Tony Attwood and Temple Grandin (ISBN#978-1932565409)
Information for carers
Carers provide substantial and regular unpaid care for another person, such as a relative, partner or friend. Supporting an adult who has ASD can be difficult. Often carers know the person with ASD very well and may do many things to support the person and to mediate the impact of autism on the person’s everyday life. It is important that carers also seek information and support for themselves when this is required.
All carers are entitled to a Carer’s Assessment if they choose. This is usually completed by social work services or carer’s organisations. This can help carers consider what their own needs might be in order to continue to provide care.
Support for carers can come from a variety of sources. Some local authorities may offer carers’ support groups where you may be able to meet other carers, share experiences and suggestions, and find out information about autism. It is important that carers look after their own physical and mental health needs also.
- ‘Fingers in the Sparkle Jar: A Memoir’ by Chris Packham (ISBN#978-1785033506)
- ‘Look Me in the Eye: My Life with Asperger’s’ by John Elder Robinson (ISBN#978-0091926335)