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Likert scales are widely used in the medical and mental health systems, as they are a useful tool for rating everything from mood to pain levels. For autistic people, however, Likert scales can be more of a hindrance than a help, as the scales often do not make sense to our neurodivergent brains.
To help illustrate this, I will use my own experience as an autistic adult and my struggles over the years to use pain scales. When I was giving birth to my first child, the nurses kept asking for my pain levels. They were using a scale from one to 10 that was color-coded and had smiley faces, with one meaning that I was experiencing no pain, and 10 meaning that I was experiencing extreme pain. I told them I didn’t understand the scale, and the nurses tried to explain it to me, saying that one was no pain, and 10 was the worst pain I had ever felt, like a C-section with no anesthesia. This was not very helpful, as I had never had a C-section with no anesthesia. They changed level 10 to “the worst pain you’ve ever felt.” At this point in my 28 years, I had never broken a bone, gotten stitches, or had any other serious injuries, so my current labor pain was the worst pain I had ever felt. I kept giving high pain ratings, and in response, they kept trying to push an epidural, which I was trying to avoid. My commitment to my plan of having a natural childbirth, along with support from my husband, helped me have the birthing experience I had wanted, but I decided at that moment that Likert scales just didn’t work for me.
It wasn’t until more than a dozen years later that I realized that autism was the reason Likert Scales do not work for me, but in the interim, my struggles with pain scales continued. In my mid-20s, I began having symptoms of what would become a chronic pain condition. I spent two decades trying to communicate my pain to medical providers. Over and over, I was sent to physical therapy, which provided temporary, but not permanent, relief.
I felt like my doctors weren’t taking me seriously, and it wasn’t until my mid-40s, when I was sitting in a physical therapist’s office reading through the Defense and Veterans Pain Rating Scale that they had posted on the wall, that I realized the reason. Now that my level 10 included giving birth three times without epidurals, I had been underrating my pain. This version of the pain scale is different, and instead of just having emojis, it has clear definitions of the meaning of each of the 10 levels on the scale. I had been telling providers that my pain was at a two to three most of the time, with the highest level being a four. When I read the definitions on this scale, I realized that I was at a four most of the time, and my highest pain was a six and occasionally a seven. When I accurately rated my pain, suddenly I had an MRI scheduled, and the first real solution to my condition that I had been given in years.
Overcoming the Barriers Autistic People Face With Likert Scales
My experiences with pain scales are not unique. Many autistic people struggle with traditional Likert scales, as they are made for neurotypical people. However, when accommodations are made to ensure that the scales make sense to autistic individuals, they can become a powerful tool.
I personally rely on the book, The Incredible 5-point Scale: Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron and Mitzi Curtis. This is a book designed to help providers create Likert scales specifically for autistic kids and teens. I use this scale daily with neurodivergent clients of all ages to help them rate their anger and/or anxiety levels. This tool is also a key component of the strategies I outline in my book, What’s Your Anxiety Level? Cognitive Behavioral Therapy for Neurodivergent Children and Teens with Co-Occurring Anxiety Disorders, to help individuals increase their self-regulation skills. This version of the Likert scale uses positionality, numbers, and colors to give information about the ratings, but most importantly, the book describes how to include definitions, as well as pictures of the person’s specific interests, to ensure that the scale makes sense to them.
When I use the Incredible 5 Point Scale templates in therapy, I have the client take an active role in creating their own scale. This means that each scale is individualized, functional for the client, and designed to meet their unique needs and experiences. Each version of the scale uses terms and visuals that have meaning to the individual because they are the one who created it. This, in turn, helps them communicate with others more effectively.
I highly recommend taking a look at Dunn, Buron, and Curtis’s book to see how to create and use Likert Scales that are more accessible for the neurodivergent clients in your practice. If you are autistic, you can also create your own scale, or simply look online before appointments (medical, mental health, etc.) to find a scale that makes sense to you. Bring that scale with you to appointments, and share it with your providers so everyone is communicating on the same page. I routinely do this by sharing a picture of the Defense and Veterans’ Pain Rating Scale on my phone and before I rate my pain. This has helped me get more accurate answers and helpful responses from my medical providers and overcome two decades of the double empathy problem, which led to me receiving insufficient care.
As with many therapy tools, it isn’t that autistic people can’t benefit from Likert scales; it’s that the medical and mental health systems are neglecting to make accommodations for neurodivergent minds.
