Autism Spectrum Disorder
Objective: Overview of the diagnosis of Autism Spectrum Disorder (ASD)
Autism Spectrum Disorder (ASD) is an early-onset, persistent neurodevelopmental disorder characterized by communication processing issues, social difficulties and behavioral and motor challenges which impair or limit everyday functioning (APA, 2013a). People with ASD frequently misread verbal and non-verbal interactions and respond inappropriately in conversations and social situations. Additionally, they are often inflexible, struggle with changes in routine, display repetitive behaviour and have significant trouble forming and maintaining friendships. Symptoms of ASD vary in severity and range along a continuum from mild to severe expression (APA, 2013a; APA, 2103b). ASD begins in infancy or early childhood, however, the associated difficulties may be masked by characteristics of the individual, environmental supports, therapeutic interventions and developmental level. This means that deficits, behavioral patterns and functional limitations are usually not recognized until a child becomes unable to meet important life stage demands (APA, 2013a). Autism Spectrum Disorder (ASD) in the DSM 5 brings a number of separate DSM - IV disorders together and places them under a single umbrella diagnosis which maintains the sensitivity of previous criteria. Most individuals diagnosed under DSM- IV criteria as having an autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified, will continue to meet the criteria for ASD (or another disorder) in the DSM 5 (APA, 2013b; Lauritsen, 2013). This spectrum diagnosis permits diagnosis at both earlier and later life stages, improves accuracy of diagnosis and allows clinicians to account for variations in symptoms and severity among individuals (APA, 2013b). Although the ASD diagnosis is not expected to substantially change the number of children who are diagnosed, it will be some time before the actual effect of these changes on prevalence rates and other facets of assessment can be completely determined (Volkmar et al., 2014).
History of ASD
Scholars suggest that traces of what we now call autism have been described throughout history, in legends and accounts of feral children, eccentric individuals, religious figures and even fictional characters (Holaday, 2012; Verhoeff, 2013; Wing, 1997). The word “autism” was first used by psychiatrist Eugen Bleuler, just over a century ago, to describe the way in which individuals with schizophrenia withdrew from the external world into one’s self. Over the next decade the use of the term was expanded to include non-pathological escapes from reality or “autistic thinking” such as daydreaming or fantasizing (Holaday, 2012; Verhoeff, 2013). There were a number of individuals who worked and studied in this field during the 1930s and 1940s. Of these, only Leo Kanner and Hans Asperger, who provided vivid descriptions of the affected children and adolescents, rose to prominence (Wing, 1997). Between 1938 and 1943, Kanner observed a subset of children who he referred to as having “early infantile autism.” He described children with repetitive behaviour who were highly resistant to changes in routine, socially aloof and indifferent and who had absent or idiosyncratic speech. Despite general delays in learning, they had isolated functional capabilities, excelled at rote memory tasks and/or showed strong visuo-spatial skills (Holaday, 2012; Wing, 1997). At the same time, Hans Asperger became well-known for describing a similar group of older children and adolescents. These individuals had normal speech capabilities but poor intonation and non-verbal skills, were inappropriate in social interactions, absorbed by their own interests, frequently had poor motor skills and had specified learning problems, despite normal or superior intellect (Holaday, 2012; Wing, 1997). Despite overlapping symptoms and common characteristics, Kanner and Asperger each believed that the syndromes they described were separate and unique (Wing, 1997). Kanner, who was strongly influenced by psychoanalytic theory, asserted that autism was primarily due to having parents (especially mothers) who were detached, cold, rigid and perfectionistic. He coined the term “refrigerator mother” which along with his ideas, was readily adopted by psychiatrists, psychologists and other professionals of the time (Holaday, 2012). Beginning in the 1950s, one of the leading adherents and promoters of the “refrigerator mother” theory was Dr. Bruno Bettelheim, a professor and child-development specialist who focused his work and study on the treatment of autistic children. His influence was significant and far-reaching and the idea that autism was the result of cruel and neglectful mothers became entrenched in professional circles and in popular culture (Holaday, 2012). This theory remained prominent throughout the 1950s, 1960s and 1970s and fell into disfavour only when twin studies suggested that autism was related to genetics and variances in brain development. Researchers and clinicians proposed that autism could be a genetically-inherited personality trait that was present to a milder extent in parents and that the stilted interaction between parents and children with autism might be a reaction to, rather than the cause of, the child's behavior (Wing, 1996). From the mid-twentieth century until 1980, “autism” was considered to be a form of early-onset psychosis and the term was only used to describe individuals who were severely affected by symptoms. In 1980, with the publication of the DSM III, autism was officially recognized as a disorder and the connection between autism and schizophrenia was removed. The DSM III also allowed for less severe forms of the disorder and established autism as a developmental disability or “pervasive development disorder” (Johnson, Giarelli, Lewis & Rice, 2013). Over time, significant differences in phenotypes
and expression of symptoms have been discovered and research has revealed the causal diversity and complexity of the disorder (Johnson et al., 2013; Walsh, Elsabbagh, Bolton & Singh, 2011). On the basis of new understandings, with the publication of the DSM 5 in 2013, autism has been reclassified as a neurodevelopmental spectrum disorder (APA, 2013; Verhoeff, 2013).
Prevalence of ASD
Since the first epidemiologic studies in the late 1960s and early 1970s, the prevalence of autism has increased dramatically. Initially, European studies estimated that approximately one in 2,500 children in the population were affected by ASD, while recent studies, suggest that ASD affects as many as 1% - 2% of children globally (APA, 2013a; Baio, 2014). Current research in North America, estimates that ASD affects one in every 68 children aged 8 years. This new estimate is 120% higher than the estimates from the early 2000s (Baio, 2014). The reasons for changes in prevalence are unclear; while they may reflect actual increases in prevalence, studies suggest that they may also be related to improved awareness and recognition, differences in diagnostic criteria and practices, changes in screening age, and increased availability of services/support for individuals with ASD (APA, 2013a; Baio, 2014; Blumberg et al., 2013). Males have a four times greater risk of being diagnosed with ASD than females, however, females who are diagnosed with ASD tend to have more severe intellectual deficits (Baio, 2014, Volkmar et al., 2014). Researchers suggest that this difference in diagnosis may be related to the possibility that girls with ASD may have more subtle social and communication problems and ASD may go unrecognized when it presents without concomitant intellectual impairments or language delays (Rivet & Matson cited in APA, 2013). Studies looking at prevalence rates based on geographic area, race/ethnicity, and level of intellectual ability have shown significant variations but it is unclear whether these prevalence rate variations are related to actual differences in ASD. There is a substantial body of research that documents how ethnic/racial and socioeconomic disparities contribute to delays in the recognition, assessment and diagnosis of ASD. Within visible minority communities, the presence of intellectual disability has also been found to exacerbate the likelihood of inadequate assessment and missed diagnosis. This suggests that variations may simply reflect disparities in clinical practice, assessment, diagnosis, and treatment service availability within underserved communities, rather than, actual differences in rates. (APA, 2013; Baio, 2014; Mandell et al., 2009).
Etiology
The complexity of the disorder together with its diverse and overlapping symptoms has presented challenges in determining factors that contribute to and cause autism (Mandal, 2015). Current research suggests that the development and presentation of ASD results from complex interactions between neurobiological, genetic and environmental factors (AHRQ, 2014).
Neurobiological factors are believed to play a significant role in the development of
autism. The large number and varied nature of the deficits suggest the involvement of an extensive and diverse set of neural systems. Evidence of both functional and structural brain changes have been identified including increases in overall brain size and irregularities in white matter tract development. Despite these findings, specific loci not been identified and the significance of these brain changes are not clear. Elevated peripheral levels of serotonin have also been found in individuals diagnosed with autism and researchers suggest that other neurotransmitters, especially dopamine, play a role in the over-activity and stereotypical movement which is common in autism (Volkmar et al. 2013). Over time, a number of possible environmental factors contributing to autism have been suggested. One theory, based on unethical and discredited research, has focused on the idea that childhood vaccines contributed to or caused autism. Extensive research has been done and no evidence of a causal link between vaccines and autism has been found. Despite this, the theory persists and continues to shadow and have influence in autism-based advocacy communities (Holaday, 2012; Kirkland, 2012; Volkmar et al, 2013). Although non-genetic risk factors for autism are poorly understood, research is ongoing and studies suggest that certain environmental factors such as advanced parental age, low birth weight, extreme prematurity, fetal exposure to valproate and maternal infections during pregnancy may contribute to increased risk. Epigenetic factors may contribute to the expression of ASD by enhancing or suppressing an individual’s genetic susceptibility to the disorder (APA, 2013a; AHRQ, 2014; Hallmayer et. al, 2013; Volkmar et. al, 2013; Walsh et.al, 2011). High rates of ASD in siblings and identical twins have provided evidence that the development of autism is influenced by genetic factors (Volkmar et al, 2013). In the past, single gene research has focused on looking for susceptibility genes for ASD. While single genes have been implicated in about 15% of cases, current studies suggest that ASD more often has a polygenic mode of transmission with dozens of different genetic loci contributing to the development of ASD and autistic behaviour (APA, 2013a; Geschwind, 2011). Multiple genetic variations, both common and rare, have been found and a clear understanding of the genetic transmission of ASD is confounded by the presence of a large number of genes that occur as a result of spontaneous mutations – de novo copy-number variations (Geschwind, 2011; Hallmayer et al, 2011; Sebat et al, 2007). Further, most of these genetic variations are not specific to ASD, but also seem to increase susceptibility to a number of conditions including, schizophrenia, epilepsy, and attention deficit hyperactivity disorder (Geschwind, 2011). Research suggests that, in a majority of cases, complex processes including gene-gene interactions, gene- environment interactions, and epigenetic factors are involved in the development and presentation of ASD. It remains unclear how specific genetic risks and individual environmental factors interact to create the changes in neural circuitry and brain function which ultimately shape the behaviour of individuals with ASD (AHRQ, 2014; Geschwind, 2011; Johnson et al., 2013).
Diagnostic Features of Autism Spectrum Disorder
DSM 5 diagnosis of ASD requires that an individual display persistent, pervasive and sustained deficits in reciprocal social communication and interaction across multiple contexts when compared to norms for age, gender, and culture (Criterion A). There must also be evidence of restricted and repetitive patterns of behaviour, interests, or activities (Criterion B). Symptoms must have been present during early development (Criterion
C), must result in clinically significant impairment of daily functioning (Criterion D) and must not be better explained by intellectual disability or global developmental delay (Criterion E). Ideally, a diagnosis of ASD is made based on current and historic information gathered from a number of collateral sources including clinicians, caregivers and (if possible) the individual’s self-report (APA, 2013a). Criterion A is met only when the individual displays all of the following:
- Deficits in social-emotional reciprocity (manifested by inability to engage with and share thoughts and feelings with others)
- Deficits in nonverbal communicative behaviors used for social interaction
(manifested by absent, reduced, or atypical use of gestures, facial expressions, body orientation, speech intonation and eye contact (relative to cultural norms)
- Deficits in developing, maintaining, and understanding relationships (manifested by absent, reduced, atypical or inappropriate social approaches or interest in others)
Criterion B may be manifest in various ways and may include simple motor stereotypies, repetitive use of objects, repetitive speech and stereotyped use of words, excessive adherence to routines, resistance to change and ritualized patterns of verbal or nonverbal behavior. Individuals with ASD may also display highly restricted, fixated interests and extreme or unusual responses to sensory input. Excessive reactions, rituals and restrictions related to the taste, smell, texture and appearance of food are also common (APA, 2013a). Both Criterion A and Criterion B domains may present in significantly different ways depending on the particular individual’s characteristics, life stage, abilities, previous interventions, current supports and compensation strategies. Severity of ASD fluctuates and clinicians should specify the current level of severity and the amount of support required for each domain (APA, 2013a). Specifiers can be used to indicate the presence or absence of intellectual impairment, language impairment and/or catatonia. Related medical, genetic, or environmental factors should also be documented (APA, 2013a; Volkmar et. al., 2014).
Clinical Presentation
Core symptoms of ASD affect socialization, communication, and behaviour. Clinical signs generally present by 3 years of age and some deficits appear in infants as young as 6 or 12 months. (Levy, Mandell, & Schultz, 2009).
Speech impairments in children with ASD may occur The voice of someone with ASD very early and present as language delays, echoed or
“As an autistic child, although I could understand stilted speech,
everything people said, my responses were limited. I’d
comprehension issues and
try but most of the time no spoken words came. It was
overly literal language
similar to stuttering; the words just wouldn’t come out.” interpretation (APA, 2013a).
Parents may describe a very
“The clamor of many voices, the different smells –
quiet infant or child who
perfumes, cigars, damp wool caps or gloves, - people
showed little or no cooing,
moving about at different speeds, going in different
gurgling, babbling, gesturing
directions, the constant noise and confusion, the
or vocalization of words. In
constant touching, were overwhelming.”
other children, speech may develop normally then ~Temple Grandin, 1986 suddenly stop or begin to regress. Some children with autism appear to be in their own world and show impaired reciprocal communication even if they have formal language skills. These individuals may ignore requests, not initiate or participate in conversations, and may not even respond to their own name (APA, 2013a; Fasy, 2013). Deficits in nonverbal communication behavior are evident in very young children who do not use or respond to social stimuli in a typical way. Facial expressions, smiles, body postures and gestures may be stilted and eye contact (relative to cultural norms) may be poor, absent or atypical (APA, 2013a; Jones & Klin, 2013). Children with ASD do not typically engage with others during play, may show reduced pointing, showing, or bringing objects to others and often fail to follow the eye gaze or pointing of others. Even when spoken language deficits are subtle, individuals with ASD tend not to use expressive gestures in a spontaneous way and their body language frequently appears wooden, odd or exaggerated (APA, 2013a; Fasy, 2013). Deficits in social-emotional reciprocity are shown by children who rarely or never initiate interaction, share emotions, or imitate of other children’s behavior. When speech is used, it tends to be one-sided and it is primarily used to request or inform others rather than to mutually share thoughts or feelings with others. In adults, deficits in social- emotional reciprocity may cause difficulty in processing and/or responding to social cues particularly when the situation is new, complex or unusual (APA, 2013a). Individuals with ASD have difficulty initiating and maintaining relationships. They may be passive in social encounters, may openly reject others or, alternatively, may approach people in a manner that is perceived to be aggressive or disruptive. Young children with ASD rarely engage in shared social and imaginative play and as they grow older, play often involves very rigid and fixed rules. Adults may struggle to understand appropriate behaviour and communication and may have difficulty adapting their behaviour as they move from one situation to another. They may lack understanding of the different ways that language may be used and may have difficulty with non-literal speech. Social interest may be low, absent or atypical and while some individuals with ASD prefer to engage in solitary activities, others wish to develop friendships but have unrealistic ideas about what actual friendships require and entail (APA, 2013a).
Individuals with ASD demonstrate repetitive and restricted patterns of behaviour, interests and activities (APA, 2013a). In children repetitive behaviour may be manifest as rocking, spinning, tapping, flapping hands when excited, or self-harming behavior such as biting or head-banging. Individuals with ASD also show intense, focused, fixated and highly restricted interests. For example, children may play with only part of a toy rather than the whole toy, may excessively line up objects or may use repetitive speech, while an adult may repetitively write-out their next day’s schedule (APA, 2013a; Fasy, 2013). Children with ASD commonly show excessive adherence to routines and structure and often have restricted patterns of behavior. This trait means that they also have difficulty and become distressed with change or transitions of activities and may react with crying, screaming, flopping on the floor and having a temper tantrum or meltdown (Fasy, 2013). Some fixated interests and reactions may be related to hyper or hypo-sensitivity to sensory input. Individuals may have extreme reactions to sounds, light, odors, textures and sensations or they may seem to not feel and respond to negative or painful stimuli as expected (APA, 2013a). For these individuals, a lack of understanding of personal boundaries and risky or dangerous situations can make safety a major concern (Fasy, 2013). Some individuals with ASD have intense reactions to the taste, smell, texture, and appearance of food and may develop excessive rituals and restrictions related to food and meal time.
Functional Consequences, Comorbidities and Associated Features
There are significant functional consequences for individuals with ASD. A lack of social skills and communication abilities can have a detrimental effect on learning especially when it is dependent on or related to social interaction. Intellectual and/or language impairment often occurs in individuals with ASD and even those with average or above intelligence tend to have uneven skills and abilities. It is common to see a significant gap between the individual’s intellectual ability and their adaptive skills, academic performance and psychosocial functioning. Rigid adherence to routines, aversion to change, and sensory sensitivities, interfere with the activities of daily living and make eating, sleeping, grooming and routine care challenging (APA, 2013a). Extreme and restricted patterns of eating and food preferences are common and may persist into adulthood.
Individuals with ASD frequently experience psychiatric symptoms that do not fit the criteria for ASD. About 70 % of those with ASD have one comorbid psychiatric disorder and about 40% have 2 or more psychiatric comorbidities (APA, 2013a). Anxiety disorders, depression and attentional disorders are common but may be undiagnosed due to being overshadowed by the symptoms of ASD (Anagnostou et al, 2014; Volkmar et al., 2014). It is important that individuals are given all diagnoses for which the individual meets the criteria (APA, 2013a). ASD is also associated with physical health issues and individuals may experience seizures, sleep problems, constipation and abnormal motor signs including catatonic-like motor behaviour. A range of behavioural difficulties such self-injury, obsessive-compulsive phenomena, tics and affective signs are frequently observed in ASD and some individuals will display under or over reactivity as a result of impairments in emotional regulation (APA, 2013a; Volkmar et al., 2014).
Symptoms of ASD and the related consequences are often experienced more acutely in childhood and youth and improve with age. While individuals may continue to require resources and support, they are often able to work successfully and live independently or within a supportive environment (Fasy, 2013). Although adults without intellectual disabilities often learn to manage language difficulties and suppress repetitive behaviour in public, the diagnostic criteria is considered to be met if communication issues and repetitive patterns of behaviour and activities were clearly evident in the individual’s past (APA, 2013a).
Screening and Assessment
Early intervention for individuals with ASD is important and has been found to improve outcomes. However, presentation of ASD can show substantial variation depending on the severity of the individual’s condition, their developmental level and their age. This makes the diagnosis of autism in infants and toddlers particularly challenging (APA, 2013a; Fasy, 2013). Some children show developmental delays prior to 12 months of age but delays become more prevalent and apparent during the second year of life. Developmental screening of young children and infants should include questions related to the core symptoms of ASD, with attention paid to social connection and unusual, restricted or repetitive behaviours (Fasy, 2013; Volkmar et al., 2014). Early screening is especially important if parents and caregivers of very young children describe unusual speech patterns, social difficulties or other atypical behaviors in their child (Fasy, 2013; Jones & Klin, 2013; Lopatin, 2012). A number of instruments which focus on developmental status as well as social, communication and behavioural concerns may be helpful to clinicians in this regard (Johnson, Giarelli, Lewis & Rice, 2013; Mandal, 2015; ). A diagnostic evaluation and comprehensive multi-disciplinary assessment should be completed if screening reveals concerning ASD symptomatology. The assessment team should include clinicians with expertise in speech and language therapy, occupational therapy, education, psychology, psychiatry, and social work. Assessments should focus on core and comorbid symptoms, look at adaptive, sensory, and motor skills, and include in-depth cognitive, language and neurological testing (NIH, 2015; Volkmar et al., 2014). Input from families is crucial and assessment should include behaviour descriptions as well as parent’s current and ongoing concerns and observations (Levy, Mandell, & Schultz, 2009).
Intervention and Treatment of ASD
Historical ApproachesThroughout history, many different approaches have been used in the management and treatment of ASD. Approaches taken during most of the twentieth century primarily focused on encouraging children with autism to adopt more desirable social behavior and many, but not all, had a punitive effect. These interventions included such things as: long-term removal from parents with placement in residential or foster care settings (parentectomy); ingestion of Lysergic acid diethylamide (LSD) in an attempt to alter the individual’s perceptive state; use of electroconvulsive therapy (ECT) as treatment; use of painful electrical shocks and ECT as punishment for undesirable behavior; chelation therapy; holding or compression therapy (physical restraint) to promote calm and attachment to the holding figure; and the use of exclusion, special and/or supplemented
diets. Despite anecdotal reports of improvement in a few individual cases, the majority
of these approaches were found to be ineffective, unethical, outright harmful and often traumatizing ( ASAT, n.d.; Durbin & Mandas, 2013; Herbert, Sharp & Gaudiano, 2002).
Complementary and Alternative Medicine (CAM) Therapies
In recent decades, interventions such as facilitated communication, sensory integration therapy, auditory integration training, dietary restrictions and/or supplementation, use of biological agents, and numerous other complementary and alternative medicine (CAM) therapies have been proposed, developed, widely publicized and adopted. These interventions make claims related to improving deficits in cognition and communication, developing pro-social behaviour, gaining functional skills, and promoting independence in those with ASD (Levy & Hyman, 2008; Volkmar et al., 2014). Research studies focused on these approaches have generally been found to be methodologically weak and there is a lack of sound scientific evidence that these treatments produce lasting or meaningful outcomes for people with ASD. Some CAM approaches have theoretical promise, but others are potentially harmful and many are overly-expensive (Anagnostou et al, 2014). Because the weight of available evidence does not support most CAM approaches, health providers should not recommend these treatments to caregivers (Herbert et al., 2002; Levy & Hyman, 2008; Munshi, Gonzalez-Heydrich, Augenstein & D’Angelo; Myers, 2009; Volkmar et al., 2014,).
Many parents and caregivers continue to use a variety of CAM therapies, therefore, families should be encouraged to disclose all interventions used, whether or not they are empirically supported or endorsed as effective treatment (Levy & Hyman, 2008). Knowing all approaches will provide a clear picture to clinicians and allow them to evaluate the efficacy and potential harm from individual interventions, monitor potential side effects and drug interactions, convey accurate information to caregivers, and provide education to family members so they are able to recognize and appropriately evaluate any intervention they are considering (Levy & Hyman, 2008; Myers & Plauché Johnson, 2007; Volkmar, 2014).
Contemporary Evidence-Based Practice
Research suggests that the most effective therapy for ASD involves comprehensive treatment using structured and supportive behavioural, communication and educational interventions within a chronic management model (AHRQ, 2014; Myers, 2009; Volkmar et al., 2014). The focus of treatment is improving the person’s and caregivers’ quality of life. Goals for treatment include: 1) correcting or lessening core deficits; 2) minimizing associated difficulties and problems; 3) maximizing functional independence 4) alleviating family distress and 5) promoting overall health and well-being (AHRQ, 2014; Levy & Hyman, 2008; Mandal, 2015; Myers, 2009). Recent systematic research reviews support the recommendation that earlier intervention may lead to greater improvements and better overall results (AHRQ, 2014; Mandal, 2015; Volkmar et al., 2014). The pervasive nature of deficits and the existence of comorbid features means that progress is often slow and incremental (Levy & Hyman, 2008). Applied Behavior Analysis (ABA) is a well -researched behavioural intervention which is informed by empirically supported learning principles and has strong support in the peer-reviewed research literature (Myers, 2009; Volkmar, 2014). ABA focuses on reliably measuring and evaluating observable behavior within home, school, and community settings. Interventions are aimed at reshaping behaviour and improving skills through the use of consistent and repetitious positive reinforcement. ABA requires active parental/caregiver participation and features intensive individualized interventions that target specific symptoms and skills. Treatment typically moves from a one-to-one format to group interventions (Munshi et al. 2011; Myers & Plauché Johnson, 2007; Myers, 2009). Intensive discrete-trial training (DTT) and pivotal response training (PRT) are specific intervention techniques that draw on ABA principles and have been found to be effective (Munshi et al. 2011). ABA has been shown to reduce maladaptive behaviours that interfere with learning, while increasing corresponding desirable behaviours. These methods help people with ASD to generalize and adapt behaviors to new environments or situations (Myers et.al. 2007; Volkmar, 2014). There is a growing body of evidence that behavioral interventions such as ABA are associated with substantial and persistent gains in language, academic performance, and adaptive behaviour, especially when combined with early intervention beginning when children are 2 to 4 years of age. ABA interventions are also considered to be an effective and primary treatment for disruptive, self-injurious and aggressive behaviours. (AHRQ, 2014; Munshi et al. 2011; Myers & Plauché Johnson, 2007; Myers, 2009). Despite growing empirical evidence, more rigorous research is needed to increase understanding of the effectiveness of behavioral interventions with different individuals with varying symptoms (AHRQ, 2014). Effective educational programs generally involve structured intensive intervention which is provided through the collaborative effort of the family and an experienced, interdisciplinary team of providers. There is consensus that the development of an individualized educational plan which accurately recognizes and responds to the individual’s strengths and vulnerabilities is essential. Curricula should include goals focused on developing academic skills and improving social, motor, and behavioural capabilities (Volkmar et al., 2014). Communication is an essential focus of intervention and the goal of enhancing verbal and non-verbal communication should be included in the educational plan of all children with ASD. Speech-language therapists can coordinate communication interventions. Alternative or augmented communication modalities such as sign language, communication boards, picture exchange, and visual supports can be developed for individuals who do not use words. Individuals with fluent speech may benefit from interventions that focus on enhancing socially reciprocal speech and pragmatic language skills (Myers & Plauché Johnson, 2007; Volkmar et al., 2014). Occupational therapy and physical therapy may also be helpful in promoting skill development and addressing specific issues and comorbid problems related to motor coordination and sensory deficits (Myers & Plauché Johnson, 2007).
Psychotropic medications have not been found to either repair or improve the core deficits of ASD and medications should not be used to treat these impairments
(Anagnostou et al, 2014; Munshi et al, 2014). Associated comorbid symptoms of ASD such as irritability, hyperactivity, depression, sleep disturbances and anxiety may be targets of psychotropic medication. In particular, risperidone and aripiprazole have been found to be effective for irritability and are the only drugs approved by the Federal Drug Administration (USA) for ASD related symptoms (Anagnostou et al, 2014; Munshi et al, 2014; Volkmar et al., 2014). Combined treatment that includes behavioural interventions, parent teaching and medication have been found to be superior to any of the treatments alone in decreasing severe disruptive behaviour, alleviating emotional distress and increasing adaptive functioning in individuals with ASD associated irritability and anxiety (Munshi et.al, 2014; Volkmar, 2014). Cognitive Behavioural Therapy (CBT) has been found to be effective for individuals with ASD and co-existing anxiety when they have the verbal and cognitive ability to engage in the intervention (Anagnostou et al, 2014; NICE, 2013). Other medications such as anticonvulsants can be used to treat seizures and melatonin has been found to be effective in some individuals with sleep disturbances. Ongoing research into the effectiveness of psychosocial and pharmacological interventions for the treatment of associated symptoms is needed (Anagnostou et al, 2014; March & Schub, 2013). ASD is complex, has various manifestations, and is generally not “curable.” This means that, even as adults, despite changes in symptoms, behaviour, and abilities over time, individuals with ASD remain in the spectrum and continue to be challenged by problems with daily living, employment, communication, social relationships, and mental health issues (Myers et. al., 2007; Myers, 2009). Adult ASD treatment should take a chronic disease management approach and clinicians working with adults should:
- work in partnership with the individual and their families, partners and carers;
- build trusting, supportive, empathic, respectful and non-judgemental relationships that offer support and care;
- foster the person's autonomy;
- promote active participation in decisions about care; and • support self-management (NICE, 2012).
Information about ASD, available treatment, and services should be given to the person and significant others (as appropriate). Clinical language should be explained and communication deficits should be considered when providing information and confirming understanding. Clinicians need to be aware of and sensitive to problems in social interaction and communication and consider their potential significance when encouraging development of relationships with others (NICE, 2012).
Parents, siblings, and partners of individuals with ASD face significant challenges and substantial parental and family support is required on an ongoing and consistent basis (Levy, Mandell, & Schultz, 2009; Myers & Plauché Johnson, 2007). Studies looking at parental divorce and separation rates in individuals with ASD have given inconsistent results, but it is clear that parents of children with ASD are vulnerable to relationship stress, marital problems, decreased social support and potential relationship fragmentation (Ramisch, Timm, Hock, & Topor, 2013; Volkmar et al., 2014 ). Family members need to be aware that they have a right to personal, social and emotional support. Short breaks, respite care and other services that can support caregivers as couples, individuals and family units should be offered and available. Clinicians providing information and services need to take into account the unique barriers and challenges faced by families coping with ASD (Myers & Plauché Johnson, 2007; NICE, 2012, 2013; Ramisch et al., 2013).
Self-Advocacy
Over the past twenty years, self-advocates with ASD have begun to regard autism as a neurological difference which should be respected, rather than as a disorder or deficiency that needs to be ‘repaired’ (Owren & Stenhammer, 2013). This movement has been referred to as the “autism rights” or “neurodiversity” movement. Individuals who follow this movement believe that “autism is a way of being” and refer to themselves as neurodiverse. Members of this movement affirm the worth of autism as an essential and valued part of their identity and articulate full acceptance of themselves as “autistic individuals” (Sinclair, 1993; 1999).
CONCLUSION
In the last 15 years, the number of individuals receiving a diagnosis of ASD has increased more than 100 fold. In addition, the criteria for diagnosing ASD has evolved to account for the diversity in social communication and interaction, patterns of behavior, and focused interests as outlined in the DSM 5. As researchers continue to conduct research, clinicians are constantly learning more about what contributes to the development of ASD, what evaluation tools are available to assist with screening, assessment and managing care, and what therapies are the most practical, useful and successful with individuals and families who live with ASD. Yet to this day, healthcare is still “catching up to Asperger, who believed that the "cure" for the most disabling aspects of autism is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children's potential (Silberman, 2015).” With persistent dedication to learning and understanding, and flexibility with practice, clinicians can contribute to the creation of a more accepting, safe and functional world for individuals who identify as ‘neurodiverse’.
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