Dr Simon Bignell, Senior Lecturer in Psychology at the University of Derby discusses autism across the lifespan and why better understanding is greatly needed.
Around 700,000 people in the UK are on the autism spectrum; a lifelong developmental disability that affects how people perceive the world and interact with others. Likewise, ADHD, that often comes along with autism, affects about 2.5% of children in the UK. Most people have heard of autism and ADHD, but few people really know what they are.
Autism historically was characterised as a ‘Pervasive Developmental Disorder’, which suggests that it impairs the traditional path of development. Therefore, we would expect typically developing children to do just that: ‘typically develop’. With children diagnosed with autism, there is a change to that developmental pathway, usually identified with some form of educational or behavioural consequence. In the latest version of the diagnostic manual (DSM), several symptoms must be present before the age of 12 years.
Likewise, people with Asperger’s syndrome have difficulty relating to other people. They may talk for hours about their obsessions or special interests. As children, they may not be interested in playing with other children. They can have a preoccupation with things that seem beyond their age level and show little or no eye contact.
Commonly, autism is thought of as a developmental condition that can significantly affect a person’s verbal and non-verbal communication, social interactions, and education performance. It is usually apparent before three years of age that children with autism are different from other, typically developing children. Characteristics include engagement in repetitive activities and so-called ‘stereotyped’ movements, resistance to environmental change or changes in daily routines, and unusual responses to sensory experiences.
How the symptoms of autism affect each child is individually determined; the developmental course of autism is unpredictable, and each child is affected to a varying degree of severity. Autism should be considered in all age groups: it is a lifelong condition. However, some markers are more frequently reported than others throughout the lifespan.
Infancy and Early Childhood
Much of the experiences of later life and expectations are influenced by very early experiences of educational settings. During the preschool and nursery years, children diagnosed with autism will usually require some adaptation of curriculum, use of materials and extra time for planning, preparing, and collaborating. They may show early social problems, such as not being interested in playing with other children and, depending on their level of ability, communicative issues when relating to carers, educators and other children.
Later in infancy and the toddler years, these children can be best cared for by developing an individualised plan that specifies their unique needs and areas of competencies. They may have difficulty adapting well to changes in the environment, be fussy eaters or have had difficulty nursing and feeding. Temperamental differences are often noticed in infants where there is more than one child in the family and comparisons are naturally made. The condition is typically diagnosed in the infancy and primary school years.
The physical and hormonal changes of adolescence affect children in many ways, and children on the autism spectrum vary as much and have similar issues as any other teenager. The child’s autism, however, may present them with unique challenges in preparing for puberty and finding a place in the social world. As with other conditions like ADHD, at secondary school children with autism may be characterised by their social and academic difficulties. They may challenge parental or teachers’ authority and may have poor self-management or time-awareness, leading them to be frequently late or to fail to complete homework tasks. It is here that children may fall behind in academic performance and may have trouble following rules and fitting in. Many strategies and adaptations to make school life easier to engage with can be made to the child’s environment.
For adolescents with autism, when going on to study further education at college, for example, autism can produce unique challenges over their peers. Life skills and the mental processes or ‘executive functions’ that involve things like planning, time management and multitasking are crucial for success and can be difficult in the context of the autistic spectrum. The gap between a student with autism and their peers may grow, not because of their academic potential but because of the struggle with these executive skills during the teen years. Preparation and working with the institution’s support structures are crucial for a productive and happy experience.
Young Adulthood and Adulthood
In young adulthood, the focus is often on longer-term goals and looking forward to the possibility of living an independent life. Many young adults with autism who attend university experience their first true taste of successful independent living. For other people with autism who are more severely affected, the ability to gain some independence from the family base during supervised trips out or work experience can be beneficial. For those able to consider the workplace, having autism can frustrate finding a suitable job. One of the dilemmas faced by many people with autism is whether to disclose their autism diagnosis at work.
As people diagnosed with autism pass into adulthood, some leave the family home and gain employment. Those that do, with support, largely manage and cope with their symptoms by adapting their occupations and home lives to suit. The long-term outcome for people with autism is good if the condition is addressed and support is available. As the person with autism ages, as with most other people, there is increased importance and reliance on the community including family and friends.
Autism across the Lifespan
Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. A person with autism typically has difficulty communicating and interacting with other people and may have characteristically repetitive patterns of behaviour and specialist or narrow areas of interests or activities.
Separating the behaviour from the individual is essential. Often the behaviour of a person with autism is an adaptive or a reasonable response to the sensory environment which the child experiences. Under such conditions, it would be unusual for a child not to exhibit frustrations, tantrums or compensatory behaviours such as repetitive hand waving, also known as stimming or flapping, or wanting to remove themselves from the immediate situation.
Early intervention can often reduce the challenges associated with the condition, lessen disruptive behaviour and provide some degree of independence. The most unpleasant traits seen in people with autism are generally not the core symptoms themselves but reportedly the sensory sensitivities of over or under-stimulation to the world around them. Simple accommodations can go a long way in remediating the everyday difficulties faced by people on the autism spectrum.
With support for those people with autism who need it and understanding from society, the prognosis for many people on the autism spectrum across the lifespan is increasingly positive. Encouragingly as public understanding of autism rises, so too we are hearing the voices of people on the autism spectrum in the community.
In early 2006, a few keen undergraduate students, who were studying Developmental Psychology, got together and asked me for a teaching module about children’s behaviour and developmental conditions of childhood. I wrote the ‘Autism, Asperger’s and ADHD’ module in response to this need for students that wanted to find out more and possibly go on to work with people diagnosed with these conditions. Since then the course has been taken by thousands of on-campus and online students from across the globe, including many students with autism themselves.
Dr Simon Bignell’s new book ‘Autism, Asperger’s & ADHD: What You Need to Know. A Guide for Parents, Students and other Professionals’ will be available on Amazon and Kindle from April 2018.