Autism spectrum disorder is a developmental disorder characterised by difficulty in social interaction and communication, in addition to restricted and repetitive behaviours, interests or activities.1
Deficits in social-emotional reciprocity, non-verbal communication and relationships are accompanied by stereotyped or repetitive behaviours, inflexible routines and responses, intense interests and/or sensory sensitivities.
Autism can occur irrespective of cognitive abilities, and while language difficulties are often observed, language delay is not consistently apparent in the diagnosis of the condition.2
Causal factors of autism implicate a range of genetic and environmental factors, however a single aetiological agent has not been identified.
The likelihood of families with an autistic child having a subsequent child with an autism diagnosis is reported as 18.7%, and this risk is increased two-fold in families with more than one child with the diagnosis.3
The influence of parental age has also been noted, with a higher risk for autism in offspring for mothers aged over 35 years4 and fathers aged over 50.5
Accurate diagnosis relies on standardised observations to identify relevant behavioural, social and sensory characteristics. This involves the observation of tasks designed to elicit spontaneous behaviours requiring social interaction and imaginative play such as that offered by the Autism Diagnostic Observation Schedule (ADOS -2; Autism Diagnostic Observational Schedule, second edition, Lord et al., 2012).
This is supplemented with a structured interview with parents or carers regarding developmental display of deficits in language, social interactions and functional behaviours using tools such as the Autism Diagnostic Interview (ADI-R; Autism Diagnostic Interview – Revised, Lord, Rutter, & Le Couteur, 1994).
These types of assessment require specialist training and are typically offered by psychologists and developmental paediatricians.
Further separate assessment of cognitive function is often required to determine any intellectual difficulties, which should also be specified as part of an autism spectrum disorder diagnosis.1
Children with autism commonly experience additional mental health, medical and health comorbidities. In addition to higher rates of difficulties with sleep, toileting and feeding, autistic children also present with higher rates of specific learning disorders, intellectual disability, neurological disorders (e.g. seizures), gastro-intestinal complaints, and other mental health disorders including ADHD, anxiety and depression.8–11
More concerning, individuals with autism have a mortality risk of almost twice the general population.12,13
Despite the high rates of comorbidities, compromised access to, and poor coordination of, treatment for these children has been noted. That is, children with autism are less likely to have their healthcare needs met when compared with children with the same chronic conditions.14,15
Research has shown that diagnostic overshadowing is common where co-occurring difficulties are attributed to, or minimised by, a more salient disability.16
However, the functional impact of these comorbidities is significant and often responsive to intervention. Furthermore, families caring for an individual with ASD are more likely to experience difficulty obtaining specific healthcare services or referrals, and have greater financial burden compared with individuals with other healthcare needs.15
The impact on access to care under the Australian National Disability Insurance Scheme is yet to be evaluated.17
Limited access and extended waiting lists for subspecialists such as developmental paediatricians, psychiatrists and neurologists, have resulted in increased reliance on primary care providers.18
This situation is reflected in the dramatic increase in general practitioner consultations in Australia among children with autism between the period 2000 and 2013, with one study reporting the frequency of consultation with a GP for this group, increasing from 46 per 100,000 in 2000 to 386 per 100,000 in 2013.19
In the GP setting, significantly higher rates of psychological complaints, increased frequency of antipsychotic and antidepressant prescriptions, and reduced rates of management of skin, respiratory and general problems have been found.20
However, despite increased provision of psychotropic medications during these consultations, a recent survey of GPs found variable confidence in managing these medications in children with autism, with GPs preferring to act as a supportive role to a trusted specialist in these cases.21
These findings emphasise the need for adequate training and support for GPs22 in the identification of autism and associated psychiatric complaints, with anxiety being one of the most prominent presentations among this group.
Anxiety, although not a diagnostic component of autism, commonly co-occurs with autism.
The presence of anxiety in children with autism is estimated at 40%,23 compared with estimated prevalence rates of 5% to 10% in typically developing children and adolescents.24,25 In adults with autism, lifetime anxiety disorder prevalence, based on structured psychiatric interview, was 54% compared with 15% in the general population.26
While there is some overlap between symptoms in both disorders, for example, social awkwardness and avoidance are commonly observed in both social anxiety and autism, the presence of traditional symptoms of anxiety can be clearly articulated in many individuals.
Additionally, a range of atypical or ambiguous symptoms of anxiety, such as social fear in the absence of fear of negative evaluation or circumscribed fears of change, novelty or objects (such as beards, toilet bowls and loud noise), are also common.27
In one study, 31% of children with autism presented with traditional and atypical anxiety, 15% presented with only atypical anxiety, and 17% presented with only traditional anxiety.16
Some researchers have suggested that the unusual presentations may relate to the sensory processing differences that occur with autism27,28 and the function of repetitive behaviours.
One possibility is that the pursuit of repetitive interests is a means of distraction from negative emotional events.29
More recently, higher rates of repetitive behaviours related to insistence on sameness have been observed in autistic children with anxiety30,31, suggesting that repetitive behaviours may be a maladaptive coping mechanism designed to reduce anxiety.32
This tendency towards avoidance of anticipated threat is one that children with autism share with typically developing children with anxiety,33 despite the use of alternate methods by autistic children to achieve their removal from the perceived threat.
Attribution of presenting symptoms to autism or anxiety has implications for the type of treatment accessed and highlights the need for accurate evaluation.
Atypical anxiety symptoms that converge with autism symptoms, such as fear of change, sensory input, and unusual fears (e.g., mechanical objects), are more likely to be attributed solely to the diagnosis of autism spectrum disorder.
The consequence of this interpretation is a lack of intervention or the application of treatments that do not address the underlying cause. That is, the physiological fear response, the cognitive expectations and maladaptive avoidance may not be targeted for intervention.
The convergence of autism and anxiety symptoms highlights the importance of supplementing gold standard autism spectrum disorder diagnostic tools with standardised assessments for anxiety.
Recently developed assessments specifically designed to focus on the way in which anxiety presents for a person who has autism will assist with this in the future.
The necessity of addressing anxiety is apparent when the detrimental effect of anxiety on functioning is observed.
Comorbid anxiety and autism has been associated with increased maladaptive behaviour; such as higher rates of aggression, poorer relationships with teacher and peers,35 more pronounced impairment in adaptive skill, including; social skills deficit,36 increased negative life experiences,37 failure to acquire coping skills,38 and reduced academic skills. 39
Effects are not limited to the individual but are also observed in the families. Impaired relationship quality with family members has been noted, and parents report limiting their social activities as a consequence of anxiety symptoms in their child with autism.35
Cognitive behavioural therapy has long been identified as best practice treatment of anxiety.40
CBT is based on the premise that thoughts, feelings, and behaviours are interconnected and altering one of these dimensions influences the other dimensions. For example, developing new thought patterns can result in changes to the emotional experience and behaviour exhibited in response to previously feared stimuli.
Treatment includes psychoeducation regarding the role of anxiety, physiological arousal reduction strategies and cognitive restructuring of thoughts and expectations that maintain or exacerbate anxiety.
Most crucially, participants engage in hierarchical exposures, in which they experience their fear in a graduated format, moving progressively from least to most feared objects or events.
This last component is essential to reduce continued avoidance of the feared item, which is a clinical feature of anxiety associated with maintenance and exacerbation of fear.
Research involving the participation of parents and carers in treatment is conflicting. However, particularly for children, the assistance of parents to facilitate exposure tasks and provide relevant reinforcements for new behaviours is essential. In addition, working with parents and carers to reduce overprotective behaviours and the provision of reassurance is also helpful.
Despite evidence of the effectiveness of CBT, an initial reticence among clinicians in the application of CBT for individuals with autism was observed prior to the mid-2000s.
Some researchers have attributed this to concerns that an individual with autism is likely to demonstrate impaired theory of mind, that is, a limited capacity to identify emotions and cognitions,41 thereby making them an unsuitable candidate for CBT.42
However, subsequent studies have since suggested that theory of mind is moderated by age and intellectual ability.43 In fact, where language ability and intellect is age appropriate, individuals with autism demonstrate the ability to recognise emotions and social attributions.44
CBT treatment programs for anxiety in populations with autism (e.g. Cool Kids ASD Adaptation, Facing Your Fears Program) have subsequently been developed and evaluated, with the program content adapted to reflect the additional challenges that autism brings, such as concrete cognitive styles, inflexibility and social and adaptive-skill deficits.
These programs utilise factors known to enhance learning in a population with autism. Examples include the use of concrete language to accommodate the rigid language and thought patterns often found in autism, incorporation of visual material, use of sensory tools, and integration of specific interests to aid attention and concentration. These modifications are incorporated to reduce barriers that may otherwise limit treatment outcome.
Studies that examine CBT treatment for autism with anxiety have predominantly focused on children and adolescents.
Several studies have demonstrated the clinical significance of CBT treatment in comparison to waiting list control conditions, and treatment as usual (treatment for autism symptoms only). These findings are examined in a number of systematic reviews with results indicating significant reductions in anxiety and improvements in functioning.45,46 The success rates for co-occurring autism and anxiety are similar to that seen for anxiety in typically developing children.47
When taken together, the research findings have led to treatment of anxiety using a CBT protocol for children with autism being classified as efficacious or probably efficacious,48–50 and most recently as an empirically supported treatment.50
It should be noted that most of the research has been conducted with children and adolescents with autism who have verbal communication skills and who are in (supported) mainstream schooling. Less is understood regarding treatment outcomes for anxiety in individuals with reduced language or cognitive function.
Overall, research indicates that anxiety is commonly experienced in individuals who have a diagnosis of autism and that this anxiety is associated with heightened maladaptive behaviour and reduced functioning.
Symptoms of anxiety in autism are consistent with those of typically developing individuals, however, they also present with anxiety symptoms that are atypical and often converge with symptoms of autism.
These atypical symptoms can make diagnosis of the anxiety more challenging and can lead to a need for anxiety intervention to be overlooked.
The recent development of anxiety assessment tools designed specifically to tease apart anxiety and autistic symptoms should lead to an increase in accurate diagnosis.
CBT is an effective and empirically supported treatment for most individuals with autism.
Adaptation made to the protocols that take account of the cognitive, learning and sensory profiles common in autism have led to treatment outcomes comparable to those obtained for typically developing individuals who have anxiety disorders.
Further investigation is required to understand the use of CBT for reducing anxiety in individuals who have impaired cognitive functioning.
Jodie Anagnos is a psychologist and PhD candidate at Macquarie University with a special interest in autism and anxiety. Dr Heidi Lyneham is Clinical Director and Research Fellow at Macquarie University’s Centre for Emotional Health
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