After 14 years of deliberation, in May 2013, the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the primary text for the diagnosis of mental disorders. The previous edition, DSM-IV, included the diagnostic characteristics and criteria for Asperger’s Disorder as an expression of Pervasive Development Disorder (PDD). The first noticeable change in DSM-5 is the APA has dispensed with roman numerals in the title. The second change is dispensing with the term Pervasive Developmental Disorder, which is replaced with the term Autism Spectrum Disorder (ASD). This broad term is used in accordance with the preference of clinicians and academics throughout the world and illustrates the point that the diagnosis of mental disorders is not an exact science and that there is evolving conceptualization of disorders such as autism and Asperger’s syndrome.
Although the eponymous term ‘Asperger’s syndrome has been in clinical and common usage since the early 1980s, the DSM-5 replaced this simple term with the new diagnostic category of Autism Spectrum Disorder Level 1, without accompanying intellectual or language impairment, a much more lengthy and cumbersome term. The rationale is that ASD can be conceptualized as a dimensional rather than a categorical concept and that a single umbrella term of ASD, with specific information on the level of expression, is more accurate and consistent with the literature and clinical experience. Thus DSM-5 merges the different subtypes of PDD into a single category of ASD on the assumption that they cannot be differentiated from one another and the criteria, especially for Asperger’s syndrome, are not consistently applied across different clinics and treatment centers.
In clinical practice, most use ASD level 1 (Asperger’s syndrome), so that parents, teachers, and therapists can use a term that is often understood by the general public. It is also the term used to seek more information from the Internet and published books, and research articles published prior to 2013.
Collapsing three dimensions of ASD into two. DSM-IV had three diagnostic dimensions for PDD: a quantitative impairment in social interaction, a qualitative impairment in communication, and restricted and repetitive behavior. DSM-5 combines social and communication. DAM-5 has effectively reduced the 12 symptoms of PDD to seven symptoms of ASD.
DIAGNOSTIC CRITERIA IN DSM-5
A. Persistent deficits in social communication and social interaction.
1. Deficits in social-emotional reciprocity ranging from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interest, emotions or affect; to failure to initiate or respond to social interaction.
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 engage in monologues and a failure to follow conversational rules. There may be literal interpretations, with a tendency for the person to become greatly confused with 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.
A deficit in emotional reciprocity can be explored by examining whether the person shows reciprocal affect in facial expressions, body language, and tone of voice. The clinician can tell a story of personal experiences and assess whether the person was ‘in tune’ and resonated with the clinician’s feelings and experiences by the use of nodding, reciprocal smiles, and appropriate facial expressions, and complementary sounds or utterances.
People with AS have difficulty in ‘reading” social situations. There are three adaptions to this:
a. Most often this results in a tendency to be withdrawn, shy and introspective in social situations, avoiding or minimizing participation or conversation; or
b. Conversely, actively seeking social engagement and being conspicuously intrusive and intense, dominating the interaction and being unaware of social conventions such as acknowledging personal space. In each, there is an imbalance in social reciprocity.
c. Achieve reciprocal social interaction by imitation and using an observed and practiced social ‘script’ based on intellectual analysis rather than intuition. This is a compensatory mechanism often (but not exclusively) used by girls with ASD, who are thus able to express superficial social abilities that can be confusing to the diagnostician. In addition, adults with AS can gradually learn to read social cues and conventions, such that the signs of deficits in social-emotional reciprocity may not be conspicuous during short interactions such as a diagnostic assessment.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging from poorly integrated verbal and nonverbal communication to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expression and nonverbal communication.
A distinct characteristic of AS is a difficulty with non-verbal communication: that is, reading someone’s body language, facial expressions, gestures, and voice to indicate specific thoughts and feelings and then incorporating that information in the conversation or interaction. An example might be not reading the non-verbal signals that indicate ‘Not now, I am busy’ or ‘I am starting to feel irritated.’ The diagnostician can note whether the person consistently gives eye contact at key points in the interaction and whether he or she is able to accurately read facial expressions and tone of voice that indicate clear as well as subtle emotional states.
3. Deficits in developing, maintaining, and understanding relationships, ranging from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to the absence of interest in peers.
The diagnostician needs to explore the number, quality, and duration of friendships and relationships throughout childhood, adolescence, and the adult years. The accompanying text to the diagnostic criteria of DSM-5 suggests there is a desire to establish friendships without a complete or realistic idea of what friendship entails.
Children who have AS display a particular 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) that are more enjoyable than socializing. The child may be content with long periods of solitude, preferring to be engaged in a special 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 with ASD 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 naive and socially immature children with ASD may be deliberately excluded and are extremely vulnerable to being teased, rejected, humiliated, and bullied by their peers.
In 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 at this stage of development that the gap in social understanding and integration with peers becomes the most conspicuous. The adolescent who has AS can be overwhelmed by the changing and increasingly complex nature of friendship, leading to feelings of isolation and loneliness. “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 ASD can succeed in achieving a life-long relationship. Their partner may have an understanding of ASD, either because they share some of the same characteristics, or because they are naturally talented intuitive, and compassionate in understanding the person who has Asperger’s syndrome.
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
These characteristics are usually associated with severe autism and are not usually observed in those that have Asperger’s syndrome.
2. Insistence in sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take the same route or eat the same food every day).
Parents are often concerned that routines and rituals are imposed in daily life, with the person who has ASD showing great agitation if prevented from imposing and completing a particular routine or ritual. Variety is not the spice of life for someone who has ASD. There is a determination to maintain consistency in daily events, and high levels of anxiety if routines are changed.
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 may have been associated with, or perhaps have led to, anxiety and are to be actively avoided, hence the tendency to insist on sameness.
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed perseverative interests).
The diagnostician makes a note of the person’s range of interests, collection, and hobbies, as well s the acquisition of information on a specific topic, throughout childhood and the adult years.
The special interests all have a ‘use by date’, ranging from hours to decades, and have many functions, such as being a ‘thought blocker’ for anxiety, and energy restorative after the exhaustion of socializing, or an extremely enjoyable activity that is an antidote to depression. The interest may involve the creation f an intricate alternative world that may be more accommodating of the characteristics of AS. 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. 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.
4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
This was a new addition to the DSM-5 that has been clearly and consistently described by those who have an AS, 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 AS from other clinical conditions.
Sensory sensitivity can be a life-long problem, with sensitivity to distinct sensory experiences that are not perceived as particularly aversive by peers. These can include specific sounds, especially ‘sharp noise 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 low or high temperatures. The child or adult can feel overwhelmed by the complex sensory experiences in particular places or situations, such as shopping malls, supermarkets, birthday parties, or school playgrounds. Sometimes, social withdrawal is not due to social confusion, but to avoidance of sensory experiences that are perceived as unbearably intense or overwhelming.
hyper- or hyporeactivity to sensory input and an unusual interest in sensory aspects of the environment are characteristics that are consistent with clinical experience, research, and autobiographies.
C. Symptoms must be present in the early development 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 AS 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 through 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 constantly observe and analyze social behavior, trying not to make a social error or be perceived as different. Adopting an alternative persona can also lead to confusion about self-identity and low self-esteem. Stress, strain, and exhaustion can result in the development of clinical depression. The AS maybe subsequently identified.
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
The DSM-5 diagnostic criteria will be 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.
The requirement to determine whether the symptoms cause clinically significant impairment has created an interesting new development, namely in some instances officially and mutually agreeing to remove the diagnosis of AS in some adolescents and adults. Some young adults, who had the classic, clear and conspicuous signs of AS in early childhood, achieve over decades a range of social abilities and improvements in behavior such that the diagnostic characteristics became sub-clinical, that is, the person no longer has clinically significant impairment in social, occupational, or other important areas of functioning. There may still be subtle signs, but when the diagnostic tests are re-administered, scores below the threshold to maintain the diagnosis are not achieved in about 10%.
E. These disturbances are not explained by intellectual disability or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for the general developmental level.
Specifiers is the term used to describe other factors:
– any accompanying intellectual and/or language impairment
– association with a known medical or genetic condition or environmental factor
– association with another neurodevelopmental, mental or behavioral disorder or catatonia
– the severity of expression from Level 1 to Level 3, based on the level of support needed for social communication and restricted, repetitive behaviors. This 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.
Severity Levels:
Level 1. Requiring very substantial support
Level 2. Requiring substantial support
Level 3. Requiring support
Stricter Diagnostic Criteria
DSM-5 uses stricter diagnostic criteria than DSM-IV so that fewer children and adults receive the diagnosis using DSM-5 – the range is 9-52% less with a median of 32%. The consensus is that the DSM-5 criteria should be relaxed. The most frequent reason is that they did not have symptom A2 (deficits in nonverbal social communication), or that they had only one of the four categories of criterion B.
Removal of the term Asperger’s syndrome from DSM-5. This will negatively affect the self-identity of adults who have benefited from the term, created self-support groups, and accessed literature and INternet support groups based on common characteristics and experiences. The majority of adults with ASD and their families want to maintain the term.
The term Asperger’s syndrome generates a mostly neutral understanding and attitude in the general community and media. They are less likely to reject that diagnosis due to a negative preconception or a perception of having a severe or debilitating mental disorder. When an adult who has previously had a diagnosis of Asperger’s syndrome begins describing him or herself as having autism, they may not be believed, as the general population considers the term autism to be associated with severe disability.
Parents of school-age children could be reluctant to contemplate a diagnostic assessment for autism, as it implies very high support needs and a very limited prognosis.
Society may gradually change the concept of autism to reflect the dimensional characteristics in DSM-5, but this will take decades. Some people may therefore remain undiagnosed and ineligible for appropriate support, treatment, understanding, and services.
The International Classification of Diseases (ICD). Published by World Health Organization, the ICD-11 (the eleventh edition) provides an alternative text and diagnostic criteria for Autism Spectrum Disorders, which continue to have the subtype of Asperger’s syndrome.