What is Asperger's Syndrome/ASD - Level 1?
In May 2013, the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the primary text for the diagnosis of Autism Spectrum Disorder (ASD). Although the eponymous term ‘Asperger’s syndrome’ had been in clinical and common usage since the early 1980s, the DSM-5 replaced the term Asperger’s syndrome with the new diagnostic category of Autism Spectrum Disorder – Level 1. The rationale was that ASD can be conceptualized as a dimensional concept and that a single umbrella term of ASD, with specific information on the level of expression, is more accurate and consistent with the research literature and clinical experience. There are three levels of expression from Level 1 to Level 3 based on the level of support needed for social communication and restricted, repetitive behaviours. The DSM-5 text (page 51) clearly states that the level of severity should not be used to determine eligibility for and provision of services, as these can only be developed at an individual level and through discussion of personal priorities and targets.
In my own clinical practice, I use DSM-5 diagnostic criteria, and in a report state that a child or adult has ‘ASD – Level 1, formerly known as Asperger’s syndrome’, so that parents, teachers, therapists and adults who have ASD – Level 1 will be able to use a term, namely Asperger’s syndrome, that is often understood by the general public. Asperger’s syndrome is also a term that can be used to seek further information from the Internet and published books, and research articles published prior to 2013. Thus, the term will still be legitimately used by clinicians, parents, teachers, therapists and those with an ASD. The general public and media will continue to use the term, and for simplicity and continuity I will also continue to use the term Asperger’s syndrome.
Diagnostic criteria in DSM-5
According to DSM-5, the essential features of ASD are persistent deficits in reciprocal social communication and social interaction, and restricted, repetitive patterns of behaviour, interests or activities.
A. Persistent deficits in social communication and social interaction
A1. Deficits in social-emotional reciprocity
The underlying assumption in the diagnostic criteria is that someone who has an ASD has difficulty ‘reading’ social situations. From my clinical experience, there are three adaptations to this characteristic. The most widely recognised is a tendency for the person to be withdrawn, shy and introspective, and an introvert in social situations, avoiding or minimizing social participation or conversations. Conversely, the person may be an extrovert, and actively seek social engagement. They are conspicuously intrusive and intensely engaged in the social interaction, dominating conversation and appearing to be unaware of social conventions, such as personal space. In each example, there is an imbalance in social reciprocity.
However, there is a third strategy for coping with difficulties with ‘reading’ social situations, and that is to be an avid observer of social interactions. The person looks for social patterns and rules, intellectually rather than intuitively analysing social behaviour, and thus achieves superficial reciprocal social interaction by imitation and by using an observed and practised social ‘script’. Adults who have Asperger’s syndrome can gradually learn to read social cues and conventions, such that the signs of deficits in social-emotional reciprocity may not be conspicuous during a short social interaction, such as a diagnostic assessment.
Asperger’s syndrome also has a ‘signature’ language profile. This can include impaired pragmatic language abilities (i.e. the ‘art’ of conversation) such as attentive listening, with a tendency to be pedantic and engage in monologues, and generally failing to follow conversational rules. There may also be a tendency to make literal interpretations, with the person becoming greatly confused by idioms, figures of speech and sarcasm. There may also be unusual prosody: for example, a child may consistently use an accent based on the voice of a television character, or an adult may speak with an unusual tone, pitch and rhythm. All these characteristics affect the reciprocity and quality of conversation.
A2. Deficits in nonverbal communicative behaviours used for social interaction
A distinct characteristic of ASD is a difficulty with non-verbal communication: that is, reading someone’s body language, facial expressions, gestures and voice, and using social context to indicate specific thoughts and feelings, and then incorporating all that information into the conversation or interaction. An example might be not reading the nonverbal signals that indicate, ‘Not now, I am busy’, or ‘I am starting to feel irritated’. The child or adult may not consistently give eye-contact at key points in the interaction, thus failing to accurately read facial expressions and tone of voice that indicate subtle emotional states.
Psychologists use the term ‘impaired Theory of Mind’ to describe the deficits in nonverbal communication. The child or adult can be considered disrespectful and rude; it might seem as though they are not considering other people’s feelings, and that they tend to make a literal interpretation of what someone says. There can be a remarkable honesty and ‘plain speaking’ in their communication, and a delay in the development of the art of persuasion, compromise and conflict resolution; they may have considerable difficulty perceiving and appreciating another person’s perspective of a situation.
A3. Deficits in developing, maintaining and understanding relationships
There may be a reduced number, quality and duration of friendships and relationships throughout childhood, adolescence and the adult years. There is often a desire to establish friendships without a complete or realistic idea of what friendship entails.
Children who have Asperger’s syndrome display a developmental sequence in making and keeping friends. In the early school years, the child may not be motivated to socialize with peers, having discovered aspects of life (such as collecting batteries, or reading about ancient Rome or the novels of Charles Dickens) that are more enjoyable than socializing. The child may be content with long periods of solitude, preferring to be engaged in a solitary interest. For those who do actively want to play with their peers, social play in the early school years tends to be more action than conversation. Friendships between typical children tend to be transitory, and social games are relatively simple, with clear observable rules that must be followed. The child who has Asperger’s syndrome may appear to be able to make and maintain these more superficial friendships of early childhood. However, brave attempts to increase social integration are often ridiculed by peers, and the naïve and socially immature child with Asperger’s syndrome may be deliberately excluded and humiliated. Children who have Asperger’s syndrome are extremely vulnerable to being teased and bullied by their peers.
In late childhood and early adolescence, friendships are based on more complex interpersonal rather than practical needs – someone to confide in rather than someone with whom to play ball, or make-believe games with dolls. It is often at this stage of development that the gap in social understanding and integration with peers becomes conspicuous for the first time. The adolescent who has Asperger’s syndrome can be overwhelmed by the changing and increasingly complex nature of friendship, leading to feelings of isolation and loneliness. A teenager who has Asperger’s syndrome explained that, ‘I would rather be alone, but I can’t stand the loneliness’.
There can be a delay of several years in the occurrence of romantic experiences, and a lack of progress in the ‘dating game’ compared to peers. However, some adults who have Asperger’s syndrome can and do succeed in achieving a lifelong relationship. Their partner may understand Asperger’s syndrome, either because they share some of the same characteristics, or because they are naturally talented, intuitive and compassionate in their understanding of the person who has Asperger’s syndrome.
B. Restricted, repetitive patterns of behaviour, interests or activities
B1. Stereotyped or repetitive motor movements, use of objects, or speech
These characteristics are usually associated with severe autism, that is ASD Levels 2 and 3 and are not usually observed in those who have ASD Level 1 or Asperger’s syndrome.
B2. Insistence on sameness, inflexible adherence to routines or ritualized patterns of behaviour
Parents are often concerned that routines and rituals are imposed in daily life, with the person who has Asperger’s syndrome showing great agitation if prevented from imposing and completing a routine or ritual. Variety is not the spice of life for someone who has Asperger’s syndrome. There is a determination to maintain consistency in daily events, and high levels of anxiety if routines are changed. From my clinical experience, the imposition of routines and rituals may actually be a mechanism for coping with high levels of anxiety, as they are soothing and relaxing. Specific events have may been associated with, or perhaps have led to, anxiety and are to be actively avoided, hence the tendency to insist on sameness.
B3. Highly restricted, fixated interests that are abnormal in intensity or focus
The diagnostic assessments for Asperger’s syndrome will include an exploration of the person’s previous and current range of interests, collections and hobbies, as well as the acquisition of information on a specific topic. An example of an interest that is unusual in terms of focus is the collecting of photographs of drain covers; and one that is unusual in intensity is an interest in horses that is so intense that the person has a desire to have her mattress in the stable, and sleep there.
Much of the knowledge associated with this special interest is self-directed and self-taught. The special interests all have a ‘use by date’, ranging from hours to decades, and have many functions; they may be a ‘thought blocker’ for anxiety, an energy restorative after the exhaustion of socializing, or an extremely enjoyable activity that is an antidote to depression. The interest may involve the creation of an intricate alternative world that may be more accommodating of the characteristics of Asperger’s syndrome. The special interest can also create a sense of identity and achievement, as well as provide an opportunity for making like-minded friends who share the same interests, facilitating conversation and indicating intellectual ability. The sense of well-being associated with the interest can become almost addictive, sometimes leading to concern that it is dominating the person’s time at home to such an extent that it is preventing engagement in other activities.
B4. Hyper- or hypo- reactivity to sensory input
The new DSM-5 is an improvement on the previous DSM IV in that it includes reference to sensory sensitivity as one of the ‘hall mark’ characteristics of ASD. This has been a characteristic of ASD that has been clearly and consistently described by those who have an ASD, and recognized by parents and teachers. Sensory sensitivity is also a dimension of autism previously examined in the published diagnostic assessment scales, and may play a central role in distinguishing ASD from other clinical conditions.
Sensory sensitivity can be a lifelong problem, with sensitivity to distinct sensory experiences that are not perceived as particularly aversive by peers. These can include specific sounds, especially ‘sharp’ noises such as a dog barking or someone shouting; tactile sensitivity on a specific part of the body; and aversive reaction to specific aromas, light intensity and other sensory experiences. In contrast, there can be a lack of sensitivity to some sensory experiences, such as pain and feeling ill, hunger, and low or high temperatures. The child or adult can feel overwhelmed by the complex sensory experiences in particular situations, such as shopping malls, supermarkets, birthday parties or school playgrounds. Sometimes, social withdrawal is not due to social confusion, but to an avoidance of sensory experiences that are perceived as unbearably intense or overwhelming. The person with acute sensory sensitivity can become hypervigilant, tense and distractible in sensory stimulating environments, unsure when the next painful sensory experience will occur.
Hyper- or hypo-reactivity to sensory input, and an unusual interest in sensory aspects of the environment are characteristics that are consistent with clinical experience, research and autobiographies. However, it is unclear why this characteristic is considered a part of section B, namely ‘an expression of restricted, repetitive patterns of behaviour’. Future research may establish why this is a characteristic of ASD, and whether it is indeed an example of restricted or repetitive behaviour, or a separate and independent characteristic.
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)
Young children who have the characteristics of Asperger’s syndrome may be able to use constructive coping and adjustment strategies to camouflage their deficits in social interaction and communication. They may achieve social success by observing and imitating others, creating an alternative persona, or escaping into the world of imagination in solitary fantasy play, reading fiction or being with animals rather than peers. These mechanisms may mask the characteristics of Asperger’s syndrome for some time, such that the child tends to slip through the diagnostic net during the primary or elementary school years. However, there is a psychological cost that may become apparent only in adolescence. It is emotionally exhausting to be constantly observing and analysing social behaviour, trying not to make a social error or be perceived as different. Adopting an alternative persona can also lead to low self-esteem and confusion with self-identity. The subsequent stress, strain, and exhaustion can result in the development of a clinical depression. The clinician diagnosing or treating the mood disorder may subsequently identify the characteristics of Asperger’s syndrome.
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
Some adolescents and adults referred for a diagnostic assessment may have the signs of ASD according to the DSM5 diagnostic criteria, but not the clinically significant impairment in functioning necessary for a diagnosis. It is not the severity of expression that is important but the circumstances, expectations and coping and support mechanisms.
The DSM-5 diagnostic criteria are used by government agencies and medical insurance companies to determine whether someone is eligible to access therapy as well as specific support services and financial support. Criterion D is included to ensure that the symptoms are of sufficient severity to warrant access to potentially expensive services and support.
Additional Characteristics not in the DSM5 diagnostic criteria:
- The experience and expression of emotions
- There can be a limited vocabulary to describe emotions, and a lack of subtlety and variety in emotional expression.
Research and clinical experience confirm an association between Asperger’s syndrome and an additional or secondary mood disorder, including anxiety and depression. These may be problems both expressing anger, and communicating love and affection. We recognise that around 86 per cent of adults with Asperger’s syndrome have daily issues with anxiety and 76 per cent with cyclical depression. We do not know how common anger management problems are with children and adults with Asperger’s syndrome. However, it would seem that anger may often be associated with the person being thwarted when attempting to engage in activities that would reduce their anxiety and stress – this leads to immense frustration, which is then expressed as anger. Anger may also be an expression of depression (internalized) in cases where the person engages not in self-blame, but rather goes into attack (externalized) mode due to low self-esteem and their sense of lack of achievement.
We are recognising an association between ASD and alexithymia (a difficulty perceiving and describing in speech, internal emotional states). This characteristic is not exclusive to ASD, and there are those with ASD who are able to perceive and express subtle emotional states. When the person who has alexithymia is asked ‘How are you feeling?’ they may simply reply ‘I don’t know’, when the full explanation might be ‘I don’t know how to mentally grasp the intangible negative thoughts and emotions swirling in my mind, identify and label them accurately, and communicate those feelings in speech so that you will understand’. However, from my extensive clinical experience there can be a remarkably eloquent expression of internal thoughts and feelings using music, lyrics, poetry, creative writing and art.
Profile of cognitive abilities
Some young children with Asperger’s syndrome start school with academic abilities above their grade level, and there are more children with Asperger’s syndrome than one might expect at the extremes of cognitive ability. There is an association between ASD and being gifted and talented intellectually, and specific learning disorders, such as dyslexia. At school, teachers soon recognize that the child has a distinctive learning style, being talented in understanding the logical and physical world, noticing details and remembering and arranging facts in a systematic fashion. Children with Asperger’s syndrome can be easily distracted by social and sensory experiences, especially in the classroom. When problem solving, they appear to have a ‘one-track mind’ and a fear of failure. As the child progresses through the school grades, teachers identify problems with organizational abilities, especially regarding homework assignments and essays. If the child with Asperger’s syndrome is not successful socially or in sport at school, then academic success becomes ever more important as the primary motivation to attend school and for the development of self-esteem.
Movement and coordination
There is an impression of clumsiness in at least 60 per cent of children with Asperger’s syndrome, but specialized assessment procedures have indicated that specific expressions of movement disturbance occur in almost all children with Asperger’s syndrome. When walking or running, the child’s coordination can be immature, and adults with Asperger’s syndrome may have a strange, sometimes idiosyncratic gait that lacks fluency and efficiency. Some children with Asperger’s syndrome can be immature in the development of the ability to catch, throw and kick a ball. Poorly planned movement and slower mental preparation time may be a more precise description than simply being clumsy. Teachers and parents can become quite concerned about difficulties with handwriting. The movement disturbance does not appear to affect some sporting activities such as swimming, using the trampoline, playing golf and horse riding.
The value of a diagnosis
There are many advantages of a diagnosis for the person with Asperger’s syndrome, such as being recognized as having genuine difficulties coping with social experiences that others find easy and enjoyable, and an acknowledgement of the confusion and exhaustion experienced in social situations. A diagnosis can lead to a positive change in other people’s expectations, acceptance and support, where the person can then experience compliments rather than criticism regarding their social competence.
Another advantage in receiving a diagnosis is that schools can access resources to help the child and class teacher; and an adult with a diagnosis of Asperger’s syndrome can access specialized support services for employment and further education.
Confirmation of the diagnosis can lead to greater self-understanding, self-advocacy and better decision making with regard to careers, friendships and relationships. There can be a sense of identification with a valued ‘culture’, and access to literature and expertise in Asperger’s syndrome. The person no longer needs to feel stupid, defective or insane.
A personal perspective of Asperger’s syndrome
From my clinical experience, I consider that children and adults with Asperger’s syndrome have a different, not necessarily defective, way of perceiving, thinking, learning and relating. The person usually has a strong desire to seek knowledge, truth and perfection, with a different set of priorities than would be expected with other people. The overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others. The person values being creative rather than co-operative, and may perceive patterns, errors and solutions that are not apparent to others. The person is usually renowned for speaking their mind and being honest and determined, with a strong sense of social justice and a distinct sense of humour.
There are several YouTube videos in which I explore autism and Asperger’s syndrome. Some have been recorded by Generation Next and Health Education as well as Yellow Ladybugs.