The Incredible 5-Point Scale supports social understanding, emotional understanding and social communication for individuals on the autism spectrum and their caregivers. By definition, having an autism spectrum disorder involves having a problem with social cognition. It is important for health care professionals to understand the nature of social cognition, in order to effectively support a person with autism. Social cognitive skills involve one’s ability to understand social interactions, social language and social rules. These skills support a person’s ability to effectively manipulate their environment, to feel comfortable in new environments and to understand their own emotions. We need social cognitive skills to negotiate emotionally tricky situations, like being in the hospital or navigating a personal health problem.
Health professionals are clearly aware of the impact anxiety has on patients in their care. The industry incorporates a 10-point pain scale to support a patient’s ability to communicate his level of pain, acknowledging that emotional communication can be difficult when a person’s self-control is compromised. Hospitals are leading the way in developing programs utilizing mindfulness and canine therapies to assist patients who have anxiety associated with chronic pain or generalized fears. In much the same way, the 5-point scale can be used to lower stress by systematically illustrating hospital routines, expectations and environmental issues. Individuals on the spectrum can benefit from the use of a scale to recognize and manage their anxieties and fears.
The learning theory supporting the use of a scale proposes that the majority of people with autism learn most effectively through the use of rule-governed systems, and seem to have the most difficulty when learning involves understanding emotional or social concepts. This theory, suggested by Dr. Simon Baron Cohen, suggests that a person with an autism spectrum disorder (ASD) might be driven to create systems, to make confusing information easier to understand and predict. Examples of systems might include visual task lists, number scales, predictable routines, and schedules. These systems are rule based and easier for a person with autism to understand. This theory would explain why a person ASD might rely heavily on schedules and routines to keep their emotions in check.
The hospital environment and related clinics present new “systems” for almost everyone, and these new systems will probably cause a good degree of stress and anxiety. For a person with autism, the level of stress and anxiety can be overwhelming. When using the 5-point scale, a good place to start is to teach the person to recognize her feelings and her level of self -control. By using the scale, she can then effectively communicate her level of control to the provider. Due to the nature of a hospital or clinic visit, I would recommend this scale be used throughout the person’s day, to stay on top of the emotions and increase the chances that a calming strategy (such as deep breathing, mindfulness exercises, or listening to music) will be successful. When you design a scale, you are clearly defining for everyone what each number means; you are agreeing on which challenge or feeling relates to which number; and you can all begin to ‘talk in numbers’.
An example of this type of scale (below) is the classic anxiety scale. By using this scale to “check in” throughout the day or periodically throughout a procedure, you are helping the person to stay in touch with his feelings while keeping everyone else apprised as to his emotional level of control. A dental professional might use this scale with the pre-arranged agreement that they will “take a break” if the person rates herself at a 3. Stopping before peak anxiety or stress can help the patient maintain control of her own anxiety, and this routine can increase trust between the highly anxious patient and the dentist.
If a patient loses emotional control, she will most likely be embarrassed and upset. Health care professionals can use this scale to process what happened without using blaming language. For example, you might say, “I heard you got to a 5 today. I am so sorry. We will work on some strategies to help everyone do better next time. By using this approach, you are acknowledging that the loss of control was most likely not fun for anyone and that everyone can help together to change outcomes.
Asking a person with ASD to rate their pain using the traditional 10-point pain scale might be too confusing, especially for the patient with ASD. Without clear ideas about what each number means, individuals with ASD can easily become overwhelmed. Using a 5-point scale can simplify the 10 point system, while adding specific details to each number value. A generic pain scale might look like this:
5= I can’t stand the pain!! The pain is so bad that I can’t calm down! I can’t control myself!!! Do something!!!!
4= I feel pain all the time. The pain makes it hard to sleep. I think about it all the time. It is hard to relax.
3= I feel pain most of the time no matter what I do. It bothers me a lot.
2=I feel pain on and off depending on what I do.
1=I don’t feel any pain at all.
A biologist once said that “under stress the brain favors rigid habit memory over more flexible cognitive memory” (Margaret Schmidt). This is a great point to remember when working with patients with ASD, and it implies that the scale might increase its’ worthiness with each use. If you use a scale with a patient once, it might be a good idea to keep that scale in the patient’s file so that its’ use can be become predictable and reassuring during follow up visits.
“Designing supports and accommodations is not beyond our capabilities as a society . . . first we have to learn to think more intelligently about people who think differently.”
--Steve Silberman (Neurotribes)
Baron-Cohen, Simon and Golan, Ofer. 2014. Systemizing Emotions: Teaching people on the autism spectrum to recognize emotions using interactive multimedia. Chapter in Learners on the Autism Spectrum. edited by Kari Dunn Buron and Pamela Wolfberg. Autism Asperger Publishing Co.
Buron, K.D. & Curtis, M. 2012. The Incredible 5-Point Scale Second Edition. Autism Asperger Publishing Co.