One Saturday, Catherine Maurice took her son and daughter, Daniel and Anne-Marie, for a walk. Anne-Marie has autism. A little black dog ran out of a driveway, yapping excitedly. Ann-Marie was afraid and began to cry. This excited the puppy then began to jump up on her. The dog was not dangerous, he just wanted to play. Anne-Marie started to run around screaming and would not respond to her mother’s efforts to reassure her. Her mother finally picked Anne-Marie up and took both of the children home. Daniel cried for about five minutes and was soon calm. Anne-Marie cried for the rest of the weekend.
This scene is described in the book, Let Me Hear Your Voice: A Family’s triumph over Autism. Similar situations take place every day in classrooms and homes with individuals with autism. A neurobiological perspective can help us to understand incidents like this and assist those with autism.
When an individual becomes stressed by a strange dog, for example, the body produces cortisol; a neurobiological stress hormone reflecting hypothalamic-pituitary-adrenal (HPA) axis activity. It has been termed the stress hormone because it is secreted at higher levels during a flight or fight response to stress. Small increases have positive effects. However, higher levels have been shown to impact cognitive function.
When we are highly agitated and therefore cortisol levels are high, thinking and memory are affected (Jacob and Nadel, 1985). Anne-Marie’s body was flooded with cortisol and she could not process her mother’s reassurance. It is not that she would not listen to her mother. Her brain was so chemically stressed she could not respond as she would normally. Spratt et al (2014) found significantly higher serum cortisol response in children with autism. Analysis showed significantly higher peak cortisol levels and prolonged duration of the cortisol elevation in children with autism. Daniel, who was also frightened of the puppy, was able to calm down after a little while but his sister was upset for the entire weekend.
According to the research of Corbett, et al, 2014, there may exist a spectrum of responsivity to stress. Some individuals have abnormally high levels of cortisol when faced with a stressful situation, while others have abnormally low levels (Ruttle, et al, 2011). The length of time the behavior persists is also relative to the level of cortisol. In some individuals, stress arousal heightens the level of cortisol, but this reaction begins to decrease as time elapses. This same research study explains that an individual may adapt to long-term stress with a decrease in cortisol, demonstrating under-arousal in stressful situations.
Individuals with ASD, like Anne-Marie, often have hyper-responsivity to stress (Corbett, Schupp & Lanni, 2012). Stress levels are related to factors such as age, gender, SES and context in relationship to the individual. If an individual with ASD, as in Anne-Marie’s case, is faced with an unexpected situation, the event may be experienced as quite stressful.
Once we understand what is happening, physically, to individuals with autism when they are stressed it becomes clear that having appropriate interventions in place is crucial. Walker (1995) conceptualized the “acting out cycle.” The phases of calm, agitation, out-of-control, de-escalation and recovery are widely accepted. Occasionally we do not know what has triggered the agitation, since there are both fast and slow triggers. A person may become upset by a loud noise, or a series of small events such as their favorite shirt not being available and the bus running late. During this period stressed individuals are unable to stay on task and may be non-compliant. Confrontation or punishment at this stage may serve as an additional trigger and result in an even greater adrenal cortisol secretion.
During the acceleration phase, many individuals will attempt to draw others in by hitting or screaming. In peak, out-of-control periods, cortisol has impaired cognitive function. Restraint is sometimes needed in order to keep the person from harming themselves or others. During the de-escalation period, students become calmer. Finally the cortisol level diminishes and a period of subdued behavior and interactions follows.
Typical descriptions of the acting out cycle include “went crazy;” “lost it;” and “gone nuts.” These descriptions are harmful because they blame the person and do not acknowledge the cortisol excitation that has made them biologically unable to access normal thinking. We would not punish a person with cerebral palsy for walking slowly. It is well established that people with ASD become easily over aroused and, once over-stimulated, they remain so for extended periods (Baranek, 2002). We need to stop punishing individuals with ASD, in a state of adrenal cortisol arousal, for not being able to respond appropriately. It is impossible for them to do so!
Understanding that adrenal cortical excitation can last for hours, or even days in some individuals, is crucial when designing interventions. Every time Anne-Marie began to quiet down, she would remember the dog and “go off again,” crying and terrified. Her mother tried reassuring her and then ignoring her behavior, but nothing worked.
On Monday, Catherine tried to de-dramatize the incident by telling a social story about the dog. “The dog….made so much noise…and we all told that dog to stop. Ann-Marie was the bravest of all! She stood there and said, ‘Go away, dog!’”
Anne-Marie began to repeat, “Go away dog!” and smiled calmly. The cortisol had finally drained and she could access her neo-cortex and was able to learn a new skill (Maurice, 1993, pp. 179). Social stories, developed by Carol Grey (1993), are antecedent prompts to prepare individuals with ASD for events that are stressful. They describe situations from the person’s point of view and suggest different behaviors. Once a trigger has been identified, a story can be written to prepare the individual with a way to manage the stressful stimulus.
Nathan hated loud noises, especially fire drills. He would scream for hours after the loud warning rang. So we wrote The Fire Drill Story with him. The book acknowledged his stress, and related a sequence of events he should follow. He read the book over and over on fire drill days and was able to keep himself calmer, refraining from screaming.
The response to a student, who is agitated or even in the out-of-control phase, is critical. Punishment will only increase the stress reaction. There should be consequences for inappropriate behaviors. However during the throes of an episode is not the time to enforce them. A person in the midst of adrenal cortical excitation is not capable of learning, so response strategies need to be taught and reviewed frequently.
Breathing is an important tool in calming the mind. When an individual inhales slowly, with a longer exhale, it help the body to become calm. Individuals with ASD can be taught slow, careful breathing techniques. Directing a person to “breathe with me” is much more effective then shouting “calm down!”
Individuals have different ways to recover from stressful situations. When parents, teachers or caregivers are aware of individual preferences, they can offer choices. Music can be very calming. Some teachers use motor-related songs, beginning with large movements and ending with whispers and slow controlled movements. Backrubs, weighted vests or slow rocking can be soothing and allow the brain to quiet down. The old phrase, “take a walk and get a drink,” is often effective since the water can help to dilute the cortisol.
David became highly agitated if his bus was late or the daily schedule changed. Sending him to a “time-out” room, as punishment for screaming and biting, increased his behavior. A calm-down area was created in a private corner. David was introduced to the area and reminded that he could choose to listen to music, look at train schedules, or sit in the beanbag chair when he felt agitated. He found the beanbag chair soothing and would often pull a second one on top during highly stressful times, similar to Temple Grandin’s squeeze machine. He was usually able to return to his task after about 20 minutes. Eventually he learned to ask for the calm- down area.
Individuals with ASD are physiologically prone to higher levels of cortical excitation than others. Caregivers, teachers and parents must be aware of this chemical response to stress and its longer duration. Most people know when they are getting upset and have developed strategies to help them calm down. This is even more important for children and adults with autism.
Jeanne D’Haem, PhD, began her career as an ESL teacher in Somalia with the Peace Corps. She was a special education teacher and supervisor for many years. She worked with children from pre-school to high school with special needs, medical problems, and or limited English. She is now an Associate Professor of Special Education at William Paterson University, Wayne, NJ. Her areas of expertise are behavior management, education law and the inclusion of children with disabilities in general education programs. Dr. D’Haem may be reached at firstname.lastname@example.org.
Irene Van Riper, EdD, is an Assistant Professor of Special Education in the Department of Special Education and Counseling at William Paterson University in Wayne, NJ. Dr. Van Riper has had 90 hours of Orton-Gillingham training and is completing the 100 hours of practicum to be awarded the Associate Level from the Academy of Orton – Gillingham Practitioners and Educators. Dr. Van Riper is an authority in Autism Spectrum Disorders and is instrumental in building the graduate program for Autism Spectrum Disorders and Significant Disabilities at William Paterson. She is currently co-editing a book describing this program. Dr. Van Riper may be reached at email@example.com.
Baranek, G. (2002). Efficacy of sensory and motor interventions for children with autism. Journal of Autism and Developmental Disorders. 32(5). 397-422.
Corbett, B.A., Schupp, C.W. & Lanni, K.E. (2012). Comparing biobehavioral profiles across two social stress paradigms in children with and without autism spectrum disorders. Molecular Autism 3(13).1-10.
Corbett, B.A., Swain, D.M., Newsom, C.,Wang., L., Song.,Y. & Edgerton, D. (2014). Journal of Child Psychology and Psychiatry 55(8). 924-934.
Grey, C. (1994). The new social stories book. Los Angeles, CA: Future Directions.
Jacobs, W. and Nadel, L. (1985). Stress-induced recovery of fears and phobias. Psychological Review 92(4). 512-531.
Maurice, C. (1993). Let me hear your voice: A family’s triumph over autism. Fawcett Books, NY, NY.
Ruttle, P.L., Shirtcliff, E.A., Serbin, L.A., Fisher, D.B., Stack, D.M. & Schwartzman, A.E. (2011). Disentangling psychobiological mechanisms underlying internalizing and externalizing behaviors in youth: Longitudinal and concurrent associations with cortisol. Hormones and Behavior 59 123-132
Spratt, J. Nicholas, J., Brady, K., Carpenter, L., Hatcher, C., Meekins, K., Furlanetto, R., Charles, J. (2011). Enhanced cortisol response to stress in children in autism. Journal of Autism and Developmental Disorders. DOI 10.1007/s108033-011—1214-0 75-81.
Walker, M., Calvin, G. & Ramsey, D. (1995). Antisocial behavior in schools: Strategies and best practices. Brooks/Cole Publishing, Pacific Grove, CA.