Article originally published on Psychology Today.
Minimally verbal people with autism have just as much anxiety as others.
by Christopher Lynch, Ph.D., author of "Totally Chill: My Complete Guide To Staying Cool".
Anxiety in autism can wreak havoc on functioning. It can be challenging under the best of circumstances, but downright nightmarish for someone who cannot use language.
Although we still have a long way to go, the role of anxiety in autism is increasingly being recognized and therapies have been developed or adapted to meet this need. (For a review of outcome studies on anxiety management therapy for children on the spectrum, see Sukhodolsky et al 2013).
While interventions have been found to be effective, much of the work that has been done on helping people with autism deal with anxiety has been geared toward those who are verbal. But anxiety management for nonverbal people with autism is often limited to medication and/or behavioral approaches. The target of intervention, in many of these cases, is more on behaviors that result from anxiety rather than on the anxiety itself.
This lack of attention for those who are minimally verbal is unfortunate given the amount of distress anxiety can cause and the impact that it can have on personal growth.
To help rectify this situation, I offer six steps to address anxiety for nonverbal people with autism. Modify the specifics to match the age, developmental level, and preferences of the person you are supporting.
Step 1: Do Your Detective Work.
Look for signs of anxiety. A person who does not use spoken language to communicate will often express herself through behavior. Challenging behavior is rarely intentional and usually a sign that a person is overwhelmed. Also be sure to look out for physical signs of distress such as trembling, sweating, rapid breathing, pounding heart, etc.
When anxiety is detected, figure out what is causing it and then take steps to address accordingly. A person can be anxious for any number of reasons. However, there are some factors that I consider to play a pivotal role in creating anxiety for those on the spectrum, including unexpected change, transitions, communication challenges, task frustration, and sensory sensitivities.
Step 2: Make Use of Augmentative and Alternative Communication (AAC)
Nonverbal does not mean noncommunicative. Those who are minimally verbal can communicate in other ways.
Find ways for the person you are supporting to express when he is anxious or frustrated. For those who use electronic assistive devices, you can program "anxiety," "coping," and related words right into those systems. Pointing at pictures or hand gestures can also be effective. The key is to develop a consistent way for the person to communicate when he needs assistance.
Step 3: Provide a Relaxing Environment
An ounce of prevention is worth more than a pound of cure and this certainly applies to how we set up environments for the people we support. Sensory factors are huge. This means avoiding harsh stimulation along with providing an environment that is soothing and welcoming. Natural lighting, soft music, sound-absorbing tiles, and spacious hallways are just some of the environmental hacks we can apply to set a relaxing tone.
Step 4: Use Comforting Strategies
Provide comfort when someone appears distressed. This comfort can be supplied in the form of a hug, a reassuring voice, or by providing an object that the person finds soothing, such as a stuffed animal or favorite toy. Additionally, you can set up specific zones of comfort for the person to use when distressed, like a sensory tent or peaceful outside garden.
Step 5: Teach and Prompt Coping Skills
Ideally, we want the people we support to have coping skills that they can actively employ when under duress. The specific strategy does not matter as much as the fact that the person knows there is something she can do to feel better when anxious. Concrete strategies such as taking a deep breath, squeezing a stress ball, or gently pressing hands together can be highly effective.
To teach these skills, first, provide repeated demonstrations, then prompt and guide the person through the technique when she is anxious. Over time, the person may be able to initiate the technique herself. However, even if she doesn’t you can prompt, cue, and guide the use of the technique.
Step 6: Care for the Caregivers
The nonverbal person on the spectrum, in addition to his challenges with language, also often has high support needs across other domains of functioning, such as learning, daily living skills, and health. The amount of time and energy required to meet these needs can sap the mental and physical reserves of parents, support persons, and other caregivers.
It can be difficult for a caregiver to step back and address anxiety in a comprehensive way while also trying to meet all of these other needs. Consequently, it is important to provide caregivers with support (emotional, practical, financial, and informational) along with opportunities for respite. This approach not only demonstrates compassion but ultimately improves quality of care.
- There is a high rate of anxiety in autism.
- Anxiety management strategies have been developed or adapted for autism but focus mostly on those who are verbal.
- There are a number of steps that can be taken to help address anxiety for nonverbal people with autism.
Kent, R., & Simonoff, E. (2017). Prevalence of anxiety in autism spectrum disorders. In Anxiety in children and adolescents with autism spectrum disorder (pp. 5-32). Academic Press.
Sukhodolsky, D. G., Bloch, M. H., Panza, K. E., & Reichow, B. (2013). Cognitive-behavioral therapy for anxiety in children with high-functioning autism: a meta-analysis. Pediatrics, 132(5), e1341-e1350.