Reducing Anxiety in Children with Autism

No, autism is defined by having a pattern of signs and symptoms that include social communication difficulties, repetitive and rigid behaviors, and often a different sensory processing system. However, anxiety symptoms are more common in people who have autism.

Yes, anxiety can look different in a child who is on the autism spectrum. One of the ways anxiety can present in a child with autism is anger, including temper tantrums and being argumentative, which we understand is the "fight" response of anxiety. Another reaction can be selective mutism, where the child is unable to access language and is rendered mute, the "freeze" response of anxiety. Selective mutism occurs in both genders but is more common in girls with autism. Also, anxiety tends to worsen some of the symptoms of autism, including repetitive behaviours and rituals, obsessions, a single-track mind, and sensory issues. For example, clear indicators of increased anxiety in an autistic child include an increase in rituals, obsessions, rigidity of thought or behaviour, sensory seeking and sensory avoidance.

The best source for parents for resources to assist children with autism are Jessica Kingsley Publishers (JKP), London (https://uk.jkp.com/). I can recommend using a manual that teaches you to understand your child's anxiety, to manage it, and to assist your child to manage it. I co-wrote a book for this purpose to assist parents of young children with anxiety and autism, 10 Steps to Reducing Your Child’s Anxiety on the Autism Spectrum: The CBT-Based ‘Fun with Feelings’ Parent Manual, published in 2020 by JKP. There is a companion book for your child: Having Fun with Feelings on the Autism Spectrum: A CBT Activity Book for Kids Age 4-8.

Food aversion is not always about sensory sensitivity. There can be anxiety associated with not knowing what a parent has prepared to eat (fear of uncertainty) and seeking consistency and predictability in daily experiences. Another aspect is having to sit still at a meal table if the child is hyperactive and seeks to avoid close proximity to others. A further dimension is the emotional 'atmosphere' at the meal table and an aversion to emotional tension and expectation in others. Another dimension is the anticipation of communication for a child who has language difficulties, especially in the area of pragmatics. A parent may use pictures of the meals scheduled for the day to reduce uncertainty, accepting coming to the table for a few mouthfuls of food then being free to leave the table to move around then return to the table for more food, sitting at the far end of the table (social factors), and the family being aware of emotional sensitivity and communication challenges and accommodating these.

If the behavior is unacceptable then it would be appropriate to identify and encourage an alternative behavior. I would also recommend further exploration for the reason for anxiety and consider environmental modification and strategies to improve cognitive/communication abilities. Stimming is an indication of needing support, emotionally and practically. The child may initially resist an alternative stress/anxiety reduction behavior as the previous one was effective and it may take time to adopt/trust the alternative behavior.

I would use a Carol Gray Social Story to explain what to expect, why and how to cope with attending a medical appointment. This is using knowledge to overcome fear and agitation. Please take along a distracting and enjoyable activity such as an iPad to cope with waiting if you have to wait in the waiting room. An alternative is to arrange to be the first patient on the list for the day, wait outside in your car and ask the medical staff to send you a text when they are ready to see your child, avoiding waiting. A waiting room will cause an autistic child considerable stress due to the sensory and social dimensions (strangers and lack of personal space) and not having a clear indication of how long before they are seen and anticipation of uncomfortable experiences from previous examinations and treatment such as injections.

This is a relatively new concept to explain a characteristic of autism, that is not exclusive to autism. There are autistic children who are introverts and seek solitude and develop behaviours to avoid social engagement. There are those who are extroverts and actively and avidly seek social engagement. They yearn for social connection and thus, rejection is aversive, especially if the autistic child may not know why they have been rejected and what to do to achieve social inclusion and acceptance. I would suggest programmes on social and friendship abilities, Theory of Mind and explaining to peers the autistic child's sensitivity and encouraging a kinder way of rejecting an autistic child.

There are genetic, neurological and psychological reasons why around 85% of autistic children and adults have daily concerns regarding regulating and expressing anxiety. The level of anxiety can be more debilitating in daily life than the diagnostic characteristics of autism. I am amazed how autistic people cope with anxiety and it is harder to treat due to dimensions that are often not significant in the typical population. This can include aspects of impaired interoception (identifying internal signals of increasing anxiety) alexithymia, (converting thoughts and feelings to speech) aversive and traumatic experiences such as bullying such that school is a 'war zone', sensory sensitivity, difficulty conceptualizing a change in the perception of an event or fear (cognitive rigidity and cognitive restructuring) atypical response to SSRI medication, maladaptive thinking, such as personalization and catastrophizing, greater stress and social isolation and fewer emotional repair mechanisms, especially compassion and affection from family and friends "It is not a hug, it is a squeeze, and why are you squeezing me?" However, we have had very encouraging success using therapy modified to accommodate the characteristics of autism.

CBT would be a better option such as Exploring Feelings: CBT to Manage Anxiety written by myself some years ago and evidenced based from 4 independent RCT studies. The programme is published by Future Horizons. I also recommend for professionals CBT for Children and Adolescents with High-Functioning Autism Spectrum Disorders edited by Angela Scarpa, Susan Williams White and Tony Attwood published by Guilford. For adults I recommend Cognitive-Behavioral Therapy for Adults with Autism Spectrum Disorder, second edition by Valerie Gaus, also published by Guilford. I also recommend Yoga, meditation and mindfulness, the third wave of CBT.

Anxiety is often generated by bullying. We know that people with autism are bullied more often than people who do not have autism. We also know that experience of bullying is likely to lead to poor mental health outcomes. We find that it is important to find out exactly what has happened, including the words and actions, and to validate the pain felt. Next, it is important to explain the psychology of the bully to the person with autism. A person with autism can spend literally decades trying to understand why anyone would treat another person in that way. Because they do not understand it, they often self blame, which leads to low self-esteem, lack of trust in others, anxiety and depression. We need to make sure that the person is safe from bullying in the future, and that they have a pre-formulated response, and access to support, should the bullying happen again. We find that providing therapy to assist the person with autism to define themselves in the rich and textured ways that they are human, including their personality characteristics, their strengths, their abilities, values and goals, helps to move them away from the negative beliefs that they have created about themselves as a result of the bullying. We also need to help them to learn how to connect with other people safely in the future, so that they can feel included in the community and not ostracised. A re-building of trust is needed.

The instrument of choice would probably be the ASC-ASD by Rodgers et al (2016) published in the Journal of Autism and Developmental Disorders and a related article in Autism Research 9 in 2016. I would also recommend a paper by Keen et al (2019) in the journal Autism 23 which refers to the Anxiety Scale for Children with Autism Spectrum Disorder and 4 subscales on performance anxiety, anxious arousal, separation anxiety and uncertainty. You may also be interested in an article by Ozsivadjian et al (2012) on the perspectives of anxiety by parents of autistic children in the journal Autism, 16:2. A paper by Lecavalier et al (2014) JADD 44:5 compared ten measures of anxiety and 4 were deemed appropriate for clinical trials, the CASI, MASC, PARS, ADIS. Another relevant article is by Bearss et al (2016) published in Autism 20 (6). As regards your research, you would probably be wise to have instruments designed to assess anxiety in the general population and the new instruments specifically designed for autistic children for their anxiety profile.

One of the oft-described features of autism has been deficits in empathy. However, this is only partly true. There are three types of empathy each linked to the empathic circuitry in the pre-frontal cortex. A person may have all three types or none, dependent on the level of firing and integration in this circuitry. Cognitive empathy refers to the ability to infer another persons state of mind, their thoughts, beliefs, expectations and motivations, and to be able to describe them. Emotional empathy is the capacity to intuitively feel what others feel. Behavioural or compassionate empathy is the ability to intuitively know what to do to assist another person when they are in need or pain. A person with autism often has deficits in both cognitive and behavioural empathy, but has a surplus of emotional empathy. This is an important distinction because it means that the person feels for others, unlike a sociopath who has both cognitive and behavioural empathy, but lacks emotional empathy.