Managing Anxiety in Autism: What can parents do?

At least 40% of autistic individuals are also diagnosed with anxiety, making it the number one co-occurring mental health concern. As parents and family members gain a greater understanding of autism, they often realize the importance of understanding anxiety as well to find effective ways to support their autistic family member.

According to the Interactive Autism Network, anxiety is one of the most common comorbidities affecting people with autism. About 40% of autistic youth and up to half of autistic adults meet the clinical criteria of an anxiety disorder, such as social anxiety, phobia, panic disorder, or generalized anxiety, or obsessive-compulsive disorder. By comparison, the anxiety rates in adults and children who do not have autism is 18% and 25%, respectively.

Research on Medication For Anxiety

The Interactive Autism Network notes that there is not much data available about how we should go about prescribing anxiety medications in autism. Three types of drugs – antidepressants, anti-anxiety drugs, and beta-blockers (a heart medicine) – are used to treat anxiety in the general population, but do these medications work the same in people with autism? Dr. Roma Vasa and the researchers with the Autism Treatment Network found only a few drug studies that focused solely on youth with autism and anxiety. The studies were small, lacked a control group, and/or did not hide the medication's names from the researchers. Generally, the results of studies with those features may be less reliable. 

A few studies showed that children who took either antidepressants or anti-anxiety drugs showed some improvement while some antidepressants did not report any benefit in another small study. In addition, some children had unwanted side effects that ranged from mild to severe.

Similarly, a few small studies of adults with autism found that a class of antidepressants called selective serotonin reuptake inhibitors, or SSRIs, may help with anxiety, according to the Cochrane Collaboration, an independent network of scientists and researchers. Decisions about these drugs should be made on "a case-by-case" basis for obsessive-compulsive disorder and anxiety in adults with autism, the Cochrane reviewers concluded.

First Things First, When Treating Anxiety

According to Dr. Vasa, "We don't have much data about how we should go about prescribing these medications in autism, so we recommended 'starting low and going slow."

The 2016 study, Assessment and Treatment of Anxiety in Youth With Autism Spectrum Disorders, advised that doctors should start with a low dose and slowly increase it, while monitoring the patient's reactions to it. "These kids are very vulnerable to side effects," said Dr. Vasa, who is also director of education and training, and associate professor of psychiatry, at the Johns Hopkins University School of Medicine.

For core anxiety symptoms, her group listed four possible SSRI antidepressants, based upon data on children and teenagers who do not have a developmental disorder. The researchers noted that youth with autism often report one particular side effect with SSRI drugs: "behavioral activation," which may appear as hyperactivity, impulsiveness, or trouble sleeping. Other possible side effects, which are not unique to autism, are suicidal thoughts in adolescents, or worsening of mood problems in people with bipolar disorder. So these drugs "should be prescribed cautiously in youth with ASD, with close monitoring," the researchers advised. Their article, in the journal Pediatrics, includes starting and maximum doses for doctors to consider.

However, before filling a prescription, Dr. Vasa's group suggested that families and providers first address any school and home problems that trigger anxiety, and also try behavioral therapies.

For example, youth with autism may experience anxiety due to problems at school, such as bullying, unrecognized learning and speech problems, or inadequate academic and behavioral help, they explained. Health care providers can help by communicating with school staff about ways to help that student. Doctors also can help parents under stress find respite care and behavioral therapy for their child.

What can parents do?

The UK's National Autistic Society reported on a study undertook by the Middletown Centre for Autism to determine the effectiveness of parental training as a method of support in reducing the anxiety experienced by autistic children and young people. They detailed 5 steps in training parents to manage their autistic children's anxiety: 

Step 1. Understanding anxiety

Anxiety can cause physical, psychological, emotional and behavioural symptoms such as:

• nausea, headaches, sweating, muscle tension, fatigue
• feelings of fear, worry, dread or irritability
• catastrophic predictions and expectations of failure to cope
• avoidance or hypervigilance and checking
• increased repetitive or obsessive behaviours

The cause or causes of anxiety can be difficult to pinpoint. Anxiety UK suggest imagining anxiety as a bucket of water; an accumulation of small everyday stresses or something very stressful will fill the bucket or even make it overflow. Therefore, it is essential to invest time figuring out the personal causes of anxiety and identifying strategies to effectively relieve, reduce or avoid the rush of anxiety. 

Parents are encouraged to take note of any incidents of behaviours such as anger outbursts, withdrawal, increased self-stimulatory behaviour and general indicators of anxiety and to think about the events leading up to such behaviours.

Step 2. Action

Though the cause of anxiety can be highly individual, unfamiliar or unexpected changes to routine, environment or social exchanges, sensory challenges and fears or phobias have all been areas noted as causing anxiety for autistic children. Useful strategies to manage this can be:

• educating our children on emotions
• identifying emotions and levels of distress/ anxiety (visuals can help)
• educating them about anxiety and how it physically feels e.g. palms get sweaty, heart beats faster, breathing changes etc. 

Step 3. Managing Sensory Issues

Sensory issues can impact on an individual’s ability to engage fully in daily life, their relationships and it can affect the development of functional life skills. Parents can identify their child’s sensory needs and the impact certain environments have on their anxiety. The relationship between sensory issues and anxiety is not hard to comprehend; for autistic children exposure to certain sensory stimulation can cause similar symptoms to anxiety, and evolve into a ‘chicken and egg’ type spiral.

Step 4. Strategies for managing anxiety

Anxiety management strategies should be individualised to the unique needs of each individual and are likely to consist of a combination of proactive and reactive strategies, such as for example:

• removing or reducing the source of anxiety
• calm box/ sensory toolkit /sensory activities
• visual communication supports (to prepare them; to give choice of and prompt appropriate responses)
• progressive muscle relaxation and breathing exercises
• teaching emotional regulation

Step 5. De-sensitising strategies 

Cognitive behavioural therapy (CBT) and de-sensitisation therapy can help to reduce the anxiety associated with ‘triggers’. At the same time, negative thoughts and how people behave and react in triggering situations can contribute to anxiety, so strategies are needed to manage situations that may increase anxiety:

• Using diaries to write about or record the fear/anxiety trigger, reflect on that and then discuss positive ways of tackling that situation in the future.
• Researching new places/events/environments with their children well in advance.
• Planning and deciding together how the child will communicate if things are getting too much and what will happen next. Prompt cards and smart phones can be used to record this.
• Desensitisation techniques involve gradual, predicted and consented exposure to the anxiety trigger, such as using ‘fear ladders’, which visually breakdown the fear/trigger into small steps from the easiest exposure to the most difficult.
• Celebrating all success (however minor)

(Anxiety Canada has some great examples of fear ladders)

Using the Incredible 5-Point Scale

The Incredible 5-Point Scale is a visual support strategy that simplifies complex social and emotional concepts by breaking them down into five numbered levels, ranging from the most intense to the least intense. This tool, created by Kari Dunn Buron and Mitzi Curtis, helps autistic individuals understand, track, and self-regulate their emotions, voice level, body space, and other behaviors. By assigning simple numbers, the scale helps users think more efficiently and choose appropriate strategies for managing their feelings and actions. 

How it works

• Breaks down behaviors: A specific behavior or emotion is broken down into five levels, often using simple words or visuals. For example, a scale for anger might look like this:
  1: Fine: I'm good.
  2: Annoyed: Something is bothering me.
  3: Frustrated: I'm getting frustrated and need help.
  4: Angry: I'm getting very angry and losing control.
  5: Exploding: I'm about to explode and need to be removed from the situation.
• Uses personalized language: The scale is customized for each individual, using their own language and preferred examples to make it more meaningful.
• Provides coping strategies: Each level includes specific, pre-planned strategies that the individual can use to manage the feeling or behavior. For example, strategies at level 2 or 3 might be to count to ten or use a stress ball, while a strategy at level 4 might be to go to a safe space.
• Teaches self-regulation: It teaches individuals to recognize their own internal states and to proactively implement self-management skills before a situation escalates.
• Offers a consistent language: It provides a consistent, simple language that can be used by the individual and those who support them, like teachers or parents, to talk about emotions without needing to use complex vocabulary. 

 

A Parent's Perspective

Lynne Mitchell, clinical social worker and parent of an autistic son says: "One of the things that I think parents should know is that anxiety doesn’t always look like ‘scared.’ I think that was super important for me to know personally and also professionally.”

Early on, Lynne and her family saw that doing anything new heightened their son's anxiety. One of the techniques they developed was breaking down any new activity into smaller steps with support. For example, when Jason was young and wanted to walk to the corner store by himself for a candy bar like his siblings, his parents created a plan to build the skill step-by-step.

“For Jason, anxiety frequently looks like an increase in rigidity and a decrease in flexibility and more need for his routines,” Lynne explained. “When he’s more anxious, things have to stay the way they’re ‘supposed’ to be.”

By creating this scaffold for the activity and giving Jason the opportunity to practice one part before moving to the next, he was able to become comfortable with the entire process over time, which kept the anxiety from overwhelming him. They used this technique throughout his life to help Jason learn skills like eating in his favorite restaurants and learning to drive.

One of the ways that Lynne and Jason have found to deal with the emotions they experience from managing anxiety everyday is to share their stories with others. The more people learn about what anxiety looks like for someone who is Autistic, the greater the understanding, acceptance, and accommodation there will be. Both Lynne and Jason give presentations at schools and other organizations. “He’s really proud of his public speaking, “ Lynne said. “He’s helping all of these people ‘get it’ better, because he knows that his life will be better if more people ‘get it’.”