About the Author
Dania Jekel, MSW is co-founder and former executive director of AANE. She was one of the first people to develop programs to train professionals about the needs and strengths of people on the autism spectrum, especially adults, women, and those who receive a diagnosis later in life. She also served on the Massachusetts Autism Commission.
I’ve used this platform many times to talk about anxiety because I think it is the most common and most difficult challenge almost everyone in our community faces, no matter the age. I am still surprised the American Psychiatric Association did not consider anxiety a core feature when it defined the criteria for an autism diagnosis in the DSM-5. The impact of anxiety for Autistic individuals can pervade almost every part of life and, in some situations, it can become completely debilitating.
Since the topic of anxiety can be broad, I thought it would be helpful to examine a sub-type of anxiety that often severely affects an Autistic person’s ability to engage in life and try new things. I call it, “Anticipation Anxiety.” It’s the feeling of panic or dread, which comes before doing something new. Examples might be meeting new people, going to a new school, starting a new grade or a new job, moving, giving a presentation, joining a group or club, learning a new skill, trying new foods, or dating. I know all of these situations could cause a certain level of nervousness or excitement for neurotypical individuals as well. But when the anxiety becomes severely overwhelming and starts way before the event happens, it crosses over into something very different. Anticipation anxiety can create extreme resistance, outright refusal, or paralyzing fear. If the individual finally manages to participate, this anxiety goes away and is no longer present. However, in spite of success, it does not seem to lessen the anxiety felt the next time the person is presented with another new experience. The same anxiety resurfaces all over again. Sometimes individuals decide (deliberately or unconsciously) that the extraordinary stress and the toll it takes isn’t worth it, and they avoid new experiences altogether.
So what should we know about anticipation anxiety and how can it be addressed?
- Understand how debilitating this anxiety can be. For parents or partners who don’t experience this, and even for the individual themselves, the extent and impact of this anxiety must be understood. This isn’t simply a case of “nerves” that can be easily shrugged off. This level of anxiety can create an extreme amount of physical and emotional distress.
- Sometimes it’s hard to identify this anxiety, as it may trigger behaviors that do not seem related. Sometimes the person with the anxiety may not be consciously aware of it, may not outwardly show it, or be able to articulate it as anxiety. For parents or teachers, it may look like stubbornness, pure inflexibility, or could result in what appears to be unrelated dysregulation. For adults, this unconscious anxiety may cause a change in routines, increased or decreased agitation, changes in speech or movement, more executive function issues, decrease in work performance, and less energy for relationships. It is crucial to see and address the anxiety that lies beneath the behavior.
- Anxiety can start way, way before the experience. Sometimes this anxiety can begin so far in advance that it may be hard to tie the response to the upcoming event.
- Anxiety can cause physical symptoms. Physiological effects can include stomach issues, headaches, loss of appetite, restlessness, irritability, and other symptoms.
When thinking about steps to take, here are some techniques to use to try to lessen the impact of anticipation anxiety.
- Rehearsal and role play. Once you realize this anxiety exists, try to prepare and practice as much as possible. Parents can help their child walk through different scenarios of the new experience and what may happen and how they could react. Adults can think about similar experiences and imagine going through the new experience to prepare themselves.
- Limit the number of new activities to a tolerable level. Even when you find a technique to lessen anxiety, the experience may take a toll in many ways. Monitor well-being carefully to prevent exhaustion.
- Listen. As a parent, listen to your child carefully. Sometimes you will need to push and support your child through the new experience, especially if you have every reason to believe the end result will be worth the angst. Understand there is also a time to step back and wait until your child is ready for the experience. If you are an adult, the ability to push through this anxiety will vary. You will need to weigh the anxiety vs. the outcome carefully and understand your own tolerance level. Learn when you should push yourself in order to have new experiences that you want and when it’s just too much or something you are doing for someone else.
I think it is also extremely important to recognize when anxiety reaches an unmanageable level. Consulting with a physician may reveal that therapy or medication may be warranted. But first, understanding that anxiety is the root of the issue will be the best, first step in working out a way forward to determine how you or your child can embrace new, desired experiences.
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