Anxiety in people with autism

Anxiety and autism are two conditions that often co-occur, to varying degrees, significantly impacting the lives of those who experience them. Individuals with autism spectrum disorder (ASD) typically experience higher levels of anxiety than the general population, a situation that presents additional challenges for both them and their families. Below, we explore the relationship between anxiety and autism , what factors trigger it, how it affects autistic children and adolescents, in what contexts it manifests, and what interventions, tools, or support can help manage it. We will also offer guidelines and recommendations for families seeking to support their children.

The prevalence of anxiety among people with autism is remarkably high. Studies from the scientific community report that more than 50% of individuals with ASD also have a co-occurring anxiety disorder . Anxiety can manifest as specific phobias, social anxiety, generalized anxiety, panic attacks, separation anxiety, or agoraphobia, among others. This co-occurrence can be due to various factors and requires an interdisciplinary approach, along with a compassionate, respectful, and integrative perspective.

Factors that contribute to anxiety in autism

• Difficulties with social understanding. The social world involves constant changes and a need for adaptation, flexibility, anticipation of others' intentions and behaviors, as well as managing misunderstandings during interactions. All of this presents a challenge for a person with autism.
• Difficulties interpreting uncertainty. In daily life, numerous situations arise where unexpected events require flexibility and adaptation from the individual to register, interpret, and comprehensively process what is happening around them. However, this population often struggles to tolerate uncertainty due to social comprehension difficulties and sensory challenges, among others. The inability to interpret social cues can increase anxiety in ambiguous situations, while sensory hypersensitivity can make unpredictable environments overwhelming. For example, uncertainty in a social conversation combined with loud noises can generate a phobia of social events, causing avoidance behavior in such situations.
• Challenges in identifying, recognizing, and managing emotions. Problems in recognizing and managing emotions in people with autism stem from difficulties interpreting social cues, expressing emotions, and regulating emotions, which can affect communication and interpersonal relationships, emotional and behavioral regulation, and increase anxiety.
• Communication and social interaction difficulties . People with autism often have trouble expressing their needs, asking for help, and identifying and expressing their emotions in expected ways, which can lead to increased relationship conflicts, frustration, and ultimately, anxiety. Persistent difficulties in communicating effectively can lead to feelings of being misunderstood and isolated in the long term.
• Sensory disturbances . They often present with sensory disturbances, both hypersensitive (overreacting) and hyposensitive (underreacting) to sensory stimuli. They may show an exaggerated reaction to loud noises, crowds, physical contact, bright lights, or uncomfortable textures, among other things. These stimuli can be overwhelming and cause high stress and a debilitating and dysfunctional impact when they are prolonged, uncontrollable, or occur unexpectedly, triggering episodes of emotional and behavioral dysregulation and extreme anxiety when they do not have time to cope or reduce them.
• Unexpected events and changes in routine. It is well known that people with autism prefer routines, structure, and schedules, which provide them with a sense of control, predictability, and anticipation of what will happen. However, when changes occur unexpectedly or during transitional processes, they often experience extreme anxiety, leading to a destabilization of their well-being, and will require varying degrees of support to readjust.

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Impact of anxiety on children and adolescents with autism

Anxiety can have a profound impact on the lives of children and adolescents with autism. It can interfere with their ability to communicate, learn, socialize, and participate in daily activities . At school, anxiety can manifest as problems with attention, concentration, avoidance of social situations, or even behavioral problems that interfere with their adaptation to the environment. At home, anxious children and adolescents may have difficulty sleeping, eating, following their daily routines, or participating in family activities.

Contexts in which anxiety manifests itself

Anxiety in children and adolescents with autism can manifest in various contexts, including:

• School environments. School can be a particularly stressful place due to academic demands, social interactions, and frequent changes in routine, with unexpected events. Sensory overload in the classroom can also contribute to increased anxiety.
• Social situations. Social events, such as parties or family gatherings, can be overwhelming due to difficulties interpreting social cues, sensitivity to sensory stimuli, lack of understanding and motivation in interaction, and difficulties managing conflicts or misunderstandings. A person with autism may not be aware of the context and can become overwhelmed and anxious at any time, whether shopping at a supermarket, visiting a museum, or walking down the street.
• Transitions and changes . Any change in daily routine, such as moving house, changing caregivers, classmates, or schools, or even going on vacation, can cause significant anxiety. The more literal and detail-oriented the autistic person is, the greater the impact on processing and working through the change, and they tend to be more tired at the end of the day.

The inability to interpret social cues can increase anxiety in ambiguous situations, while sensory hypersensitivity can make unpredictable environments overwhelming.

Tools and therapies to control anxiety

Before discussing tools and interventions focused on reducing or controlling anxiety in people with autism, it is worth noting that anxiety is also protective, expected, and necessary when it helps us to be activated and focused in situations such as studying for an exam, walking down the street, or riding a bicycle.

There are several therapeutic strategies and approaches that can help people with autism manage their anxiety:

• Cognitive-behavioral therapy (CBT) is an approach focused on identifying the antecedents and triggers of distress, as well as the variables that maintain anxiety. Initially, strategies focus on preventing anxiety from arising, enabling autistic individuals to anticipate and prevent situations that might cause distress and implement preventative strategies. If preventative measures are not possible, CBT helps activate resources to minimize the impact of anxiety. Anxiety prevention strategies can be offered in the form of pictograms, sequences, repeated routines, etc. For autistic individuals with preserved language and intellectual capacity, verbal and written strategies are offered, and direct work can be done to identify and change negative thought patterns that contribute to anxiety.
• Sensory interventions. Sensory integration therapy can help reduce sensory overload and associated anxiety. Assessments of the sensory profile of individuals with autism allow for the development of prevention and adaptation strategies, such as the use of noise-canceling headphones or awareness of the discomfort caused by certain noises, lights, or physical contact. These can be avoided or anticipated to prevent unpredictable and unexpected experiences. Along these lines, there is increasing discussion of the autism-friendly environment, which focuses on creating inclusive and understandable settings for autistic individuals by reducing overwhelming sensory stimuli and providing clear structures. This approach promotes understanding and adaptation rather than expecting individuals with autism to adjust to unsuitable environments. It includes the use of visual supports, predictable routines, and consideration of individual sensory needs. This facilitates greater participation and well-being in various social and educational contexts.

Anticipated daily routines can provide a sense of security and reduce anxiety in some cases.

• Sensory regulation boxes and relaxation strategies. Sensory boxes with sensory gadgets or materials are used as a therapeutic tool to stimulate the senses in a controlled and safe manner, helping to reduce anxiety and improve sensory regulation in autistic individuals. These boxes can contain a variety of tactile, visual, olfactory, and auditory objects, such as stress balls, soft materials, calming lights, aromatherapy, and toys that produce pleasant sounds. By providing a variety of sensory stimuli, sensory boxes can help autistic individuals calm down, concentrate better, and develop sensory and motor skills in a relaxing environment. Deep breathing techniques, meditation, and yoga can also be very helpful in reducing anxiety and stress when individuals are open to and have the opportunity to integrate them.
• Pharmacological support. In some cases, medication, along with other interventions, is necessary or very helpful in managing anxiety symptoms. It is important that any pharmacological treatment be supervised by a healthcare professional specializing in autism, since the way individuals express, communicate, or respond to anxiety and treatments is not always predictable or clear.

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Guidelines and recommendations for families

Families play a crucial role in supporting individuals with autism and anxiety. Here are some guidelines and recommendations:

• Encourage communication. Use communication tools adapted to the developmental level of the person with autism. These can be images or augmentative communication apps. Visual sequences or verbal models can help them express their needs and emotions.
• Create a predictable environment according to the person's developmental level and needs. In this sense, anticipated daily routines can provide a sense of security and reduce anxiety in some cases, while in others, a consistent routine with few or minimal changes will be necessary.
• Provide a quiet space. Having a quiet and safe place where the person can retreat, along with a sensory box, when they feel overwhelmed can be very beneficial.
• Understanding autism and anxiety management strategies. Families require training and active support in understanding and acquiring strategies for managing how an autistic person functions, how to enhance their communication and interaction, and how to handle situations that cause anxiety, thus preventing a possible escalation of behavioral problems.
• Having a good professional and community support network specializing in autism that knows and accompanies the child, adolescent or person with autism and their family throughout the life cycle, guiding them through the network of resources and providing additional strategies and personalized support that can be adjusted to the different challenges that arise in the autistic person.

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In summary, anxiety is a common and significant concern for individuals with autism and their families. Understanding the relationship between anxiety and autism, and adopting effective strategies to manage it, can significantly improve the quality of life for individuals with autism and their families. Being autism-friendly means being aware of the social and environmental factors that affect people on the autism spectrum, and making modifications to communication methods and the physical space to better accommodate each person's unique needs. This will reduce their anxiety levels and improve their adaptive behavior.