Pearl Barnes outlines common characteristics of people often seen as having a “milder” form of autism
“Since the diagnosis of Asperger’s syndrome is no longer used, does this mean I don’t have a diagnosis anymore?” I was recently asked this question by a person with a diagnosis of Asperger’s. In 2013, the American Psychiatric Association (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was revised and, controversially, removed the well-known diagnosis of Asperger’s syndrome (AS). The rationale was complex but, in essence, appeared to be due to the overwhelming confusion and continual deliberation over the differences between the diagnoses of autism and AS, as both categories shared a number of common traits. Moreover, the diagnosis given seemed to depend upon the clinician involved, so there was little consistency.
In order to answer my inquisitive student, I explained that the diagnosis remained, but the name had changed – at least according to the DSM-5, which is influential in the UK. In practice, many people continue to use the term Asperger’s syndrome; the National Autistic Society’s website says it “remains a useful profile for many diagnosticians and professionals”. For the purposes of this article though, I will refer to “high-functioning autism” (HFA).
Identification and diagnosis of HFA is neither easy nor straightforward, differing significantly from individual to individual and according to their circumstances. The diagnosis is often masked by the individual’s ability to cope by copying others and avoiding situations which they would otherwise find particularly stressful.
To add to the complication, HFA is not, in itself, an official diagnosis. Autism is a spectrum condition, ranging from mild (high-functioning) to severe, with no clear cut-off points. It is a neurodevelopmental disorder and can change significantly as the child or young person grows and develops. It is a pervasive and life-long condition, as individuals do not grow out of it but they may be able to develop coping strategies to manage their behaviour and their reactions to the world around them.
This article forms the first of a set of three articles which address the common issues encountered by children and young people with a diagnosis of autism who would be considered to be “high functioning”.
The DSM-5 uses the term “autism spectrum disorder” (ASD) to replace all previous sub-groups, such as: “Asperger’s syndrome” and “pervasive developmental disorder-not otherwise specified” (PDD-NOS).
Autism is characterised by the following areas of difficulty:
- social interaction and communication difficulties – including lack of reciprocal conversation, reduced sharing of emotions and interests and understanding of social cues
- developing/maintaining/understanding relationships, and others – including difficulty in relating to, and interacting with, people
- restricted and repetitive patterns of behaviours, activities or interests, including sensory behaviours (sensory seeking or evasion) – such as intense fixation on an object or excessive smelling.
These characteristics are present since early childhood, they limit and impair everyday functioning and they occur across all situations.
The “severity” of autism relates to the impact and the extent to which the individual’s social communication and restricted, repetitive patterns of behaviour are impaired. The levels of severity can be broken down into three categories:
- requiring support – mild expression often referred to as HFA (or Asperger’s syndrome)
- requiring substantial support – often requires speech and language therapy and/or behaviour modification training
- requiring very substantial support – the most severe expression of ASD, includes individuals who do not develop verbal communication and who may require full-time support.
HFA is a clinical condition which can only be diagnosed by a specialist, such as a neurodevelopmental paediatrician and/or a child psychiatrist, to rule out other genetic or behavioural conditions.
Autism differs significantly from person to person and can vary wildly according to situations, the individual’s personality and a whole host of other environmental influences, which can change over time. It is believed to be associated with frontal and temporal lobe development which regulates emotions and reactions. Frith (Autism and Asperger Syndrome, 1991) describes how there is a lack of “central drive for coherence”, leading to difficulty in perceiving and conceptualising the thoughts, feelings and perspectives of others, often referred to as “theory of mind”. Individuals with HFA often struggle to make sense of social situations intuitively, where they are required to draw together a number of hidden and inexplicit indicators within a moment in time.
Attributes of HFA
The notion of “high-functioning” autism refers to individuals who do not necessarily experience delays in their speech and language development or cognition, but experience differences in the way they communicate and their ability to interpret and understand their peers.
Individuals with HFA experience difficulties in each of the three main areas of impairment, each characteristic being on a continuum. Each strand can present with differing severity along the continuum at any given time. Moreover, each strand can impact upon the others; for instance, an individual with an intense interest in a particular activity will appear distant and lack the ability to interact socially, not because they can’t, but because they are more interested in the activity which has captured their attention.
The hierarchy of speech and language development is represented in the illustration on the right. Phonetics, morphology and syntax often develop as expected in individuals with HFA, but they may struggle to develop appropriate semantics and pragmatics, leading to difficulties in interpretation of others and some expressive language difficulties. Any of the following characteristics may be present:
- literal interpretation of others, leading to misunderstandings
- difficulties interpreting the nuances of language, such as figures of speech, innuendo, sarcasm, irony, parody, metaphor, insinuation, inference and picture language
- difficulty interpreting prosody (the patterns of stress and intonation) for emphasis and other non-verbal communication clues, such as stance and body language
- conversation may be one-sided due to lack of reciprocity in communication
- where no other symptoms exist, it is possible that the individual experiences social communication (pragmatic) disorder.
Individuals with HFA often struggle to predict and anticipate where a conversation is heading, due to their difficulty in “theory of mind”, leading to issues with:
- conversation openers
- repairing a conversation
- pedantic speech
- speaking their mind without understanding the impact this has upon others and thinking through the consequences
- interrupting or speaking over others
- knowing when the stop talking
- making irrelevant or inappropriate comments.
Social interaction issues result from difficulties in perceiving the thoughts and feelings of others. Children and young people with autism face their personal challenge on a daily basis by going to school, where they are expected to form friendships and interact naturally. It is not unusual for children to feel isolated and alone, leading to the onset of secondary mental health conditions such as depression, self-harm, aggression or elective mutism.
Some characteristics of those with HFA may include:
- individuals may want friendships but lack the ability to compromise to form a strong relationship with peers
- relationships may be one-sided and individuals may socially interact for their own gain and on their own terms
- behaviour may be inappropriate to grab the attention of others
- there may be a lack of interest in the activities of others and an indifference to peer pressure
- a preference for solitude or to interact with adults who may be more accommodating to their lack of flexibility
- learning within a social context may be restricted as they struggle to understand the needs of others, for instance during group work and team situations
- they may struggle to conform to rules and expectations, particularly where they appear to be unfair or illogical
- behaviour may be impulsive due to a lack of self-regulation
- they may have a strong sense of justice and right and wrong and may struggle to accommodate activities or rules which they perceive to be unfair.
Repetitive patterns of behaviours, activities or interests
The characteristics for individuals with HFA may include:
- encyclopaedic knowledge in a solitary interest
- difficulty starting or stopping due to difficulty with change and transition, with an insistence on finishing a task
- a tendency to over-generalise a rule
- an ability to learn verbatim, while struggling to be flexible
- a preference for structure, logic and order (may struggle with rule-breakers)
- rigid thinking that fails to adapt to change, which may lead to a single approach to a problem, even when it is an inefficient approach
- difficulty in coping with being wrong.
Some individuals with HFA have an inherent fear of failure and will therefore resist attempting new activities. They may be perfectionist, with high (sometimes unrealistic) personal goals and may struggle with criticism, impacting upon their learning. There is often a mismatch between their cognitive ability and their expressed emotions and they may lack understanding of the impact of their behaviour on others.
Lack of empathy should not be construed as a lack of ability to care for others; it is the difficulty in understanding the thoughts, emotions and feelings of others, and experiencing a reciprocal emotion. On the contrary, they can often be highly devoted and caring individuals. However, lack of theory of mind can lead to inappropriate behaviour as the individual struggles to conform in activities which hold no interest for them, appear illogical or nonsensical.
Although HFA is not a medical term, it is now becoming widely adopted as a mild form of ASD comparable with Asperger’s syndrome. My article in the next issue of SEN Magazine will focus upon strategies for supporting an individual with HFA.
About the author
Pearl Barnes is a past President of nasen and a SEND consultant and specialist assessor for Special Educational Needs and Disability Independent Support Service (SENDISS).