Nonverbal, Anxious and Autistic: 6 Steps to Relief
If someone is autistic, there is a good chance that anxiety is impacting on his or her life in some notable way. The close relationship between anxiety and autism is borne out in the research (Kent and Simonoff, 2017) and well elucidated by autistic persons who have shared their experience through insightful first-hand accounts.
Anxiety in autism can create distress and impact on functioning. In a good number of cases, this anxiety can be debilitating. Challenging under the best of circumstances, for someone who cannot use language this situation can be downright nightmarish.
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 autistic persons to deal with anxiety has been geared to those who are verbal.
By contrast, anxiety management for the nonverbal autistic person 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.
The nonverbal person on the spectrum, in addition to his challenges with language, also often has high support needs across other domains of functioning (e.g. learning, daily living skills, health). These areas of concern can sometimes eclipse the fundamental need for managing stress and anxiety. This is unfortunate given the distress that anxiety can cause an autistic person and the impact that it can have on personal growth.
To help rectify this situation, I offer 6 steps that can help to frame an approach to addressing anxiety in the nonverbal autistic person. Please note that much of my work has been with children and adolescents, however, you can modify the specifics to match the age, developmental level and preferences of the person you are supporting.
6 Steps to Relief
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 in a situation that is overwhelming. In addition, look for physical signs of distress such as trembling, sweating, rapid breathing, pounding heart, etc.
When anxiety is detected, then consider the factors that may be contributing to it and 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 (e.g. unexpected change, transitions, communication challenges, task frustration, and sensory sensitivities). See a previous article of mine for more details on these factors.
Step 2: Enhance Communication
Nonverbal does not mean noncommunicative. Those who are minimally verbal can communicate in other ways. Build ways for the person you are supporting to convey when he is anxious or frustrated. For those who use assistive devices, you can program anxiety and coping related words and phrases right into those systems. Pointing at pictures or use of hand gestures can also be effective. The key is to develop some consistent way for the person to communicate when he needs assistance.
Step 3: Provide a Relaxing Environment
An ounce prevention is worth more than a pound of cure and this certainly applies to how we consider 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, 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 (e.g. stuffed animal, favored toy). Additionally, you can set up specific zones of extra comfort for the person to use when distressed (e.g. sensory tent, a 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 technique.
Step 6: Care for the Caregivers
It is not uncommon for nonverbal autistic persons to have a high level of need across various domains of functioning. The amount of time and energy required to meeting 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 the nonverbal autistic person.
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.