It’s not what you’re eating: it’s how you’re eating. Dysphagia (swallowing disorder) has not received a lot of attention for individuals with autism. The symptoms may be mild, masked, or uneventful in the pediatric population. Dysphagia may be noted, but in the big picture, it may not be a priority. Further evaluation and treatment of how the pediatric population is swallowing is needed to prevent future complications.
Habitual dysphagia is a swallowing disorder without a specified physical or medical pathology. Short-term symptoms may be negligible, but long-term consequences may be life altering. Dysphagia typically addresses the pathology of a swallowing disorder, but individuals with autism have a high incidence of a habitual swallowing dysfunction that may be causal for lifelong digestive disorders (Toman, 2010).
Nonverbal individuals may have minimal ability to communicate the feeling of pain. Some patients appear to have a high tolerance for physical discomfort. Others may have no diagnosis because of their lack of cooperation. Observable signs and symptoms of dysphagia are being detected in the teenagers with autism.
Speech-language pathologists need to focus more attention on observation, evaluation, and intervention for habitual swallowing disorders with individuals with autism. The most severe consequence of dysphagia is aspiration pneumonia, caused by food particles pulled into the trachea. Although, this is not something that has been noted in teenagers, the early onset of dysphagia symptoms is a warning for future problems.
The signs and symptoms of habitual dysphagia for individuals with autism are tongue thrust (forward push of the tongue with or without protrusion to propel food to the back of the mouth), rumination, texture obsession or aversion, dry membranes, mouth breathing, eating with an open mouth, speed of eating, large bolus (too big a bite), minimal mastication (chewing), rapid oral and pharyngeal transit, pocketing (food accumulating in cheeks), forced hard swallow vs. a spontaneous soft swallow, using large gulps of liquid to initiate a swallow, choking/coughing, nasal regurgitation, and no sense of fullness (VanDahm, 2010).
Habitual swallowing disorders have minimal or mild symptoms in the pediatric population; therefore, this tends to be a low priority, if noted at all. However, the prevalence of gastric disorders is intensifying for teens and young adults with autism. The focus has been on what they are eating, not how they are eating. By the time habitual dysphagia shows signs and symptoms, it may be too late to change.
Teenagers with autism suffer from an assortment of digestive problems such as gastritis, diarrhea, constipation, allergies, diverticulitis, colitis, bruxism, mouth breathing, halitosis, esophageal stricture, hiatal hernias, leaky gut, Gastrointestinal Reflux Disorder (GERD), Celiac Disease, nausea, epistaxis (nosebleeds), irritable bowel, chronic stomach pain, regurgitation, ulcers, heartburn, dental problems, weight control, nutrition, changes in vocal quality, and eating disorders (Friedman, 2006).
Eustachian tubes and the larynx are also considerations. The small, fragile connection from the middle ear to the throat and the pair of vocal cords is vulnerable to inflammation from acid reflux. For those suffering from GERD, the acid reflux may be slipping all the way up the esophagus and irritating the eustachian tubes and vocal cords. Even minor inflammation may contribute to nasal congestion and allergy symptoms. (Hutchins, Gerety, and Mulligan, 2011).
In an informal case study, a sample population of 40 students with autism in a 14 to 22-year-old range demonstrated signs and symptoms of habitual dysphagia. Forty percent of the students had a formal diagnosis relating to gastric problems. Another 40% had behaviors that suggested an undiagnosed problem or potential problem, 2% demonstrated rumination (stimulatory behavior of repeated vomiting and swallowing), and 18% showed no current signs or symptoms of either pathological or habitual dysphagia.
The focus of treatment for gastric distress has been on dieting. Gluten-free, casein-free, ketogenic, supplement, and other diets may be suggested by physicians and support groups as strategies to relieve discomfort. Some diets produce positive effects, while others do not. Some diets have negative side effects. An evaluation of a diet should include an evaluation of habitual swallowing disorders as a contributing factor (Foxx, Mulick, and Jacobson 2005).
Other treatments are pharmaceutical. Individuals may be prescribed multiple medications, over-the-counter remedies, and vitamin supplements. A single medication may have a common side effect of dry membranes that may be compounded by more than one prescription or over-the-counter items. Individuals may be difficult to persuade to swallow medications.
To encourage cooperation, caretakers may resort to strategies such as swallowing pills dry, hiding pills in a food treat, crushing pills, chewing pills, or dissolving medications. These practices, while convenient, are not recommended. Changes to the prescribed directions, cutting pills, or altering medication may be dangerous by escalating or negating the function of the medication. Pills may be irritating to the digestive system. The direction to take medication with a large glass of water is not just for proper absorption of the medication—it is a protective measure for the digestive tract (Van Dusen, 2011).
In a medical setting, an observational evaluation is conducted before referring a patient for a Modified Barium Swallow (MBS) study to formally diagnose dysphagia. The etiology is most commonly a result of physical injury, stroke, or intubation. It is the observational (bedside) evaluation that is needed. School-based, and private practice speech-language therapists are more likely to be a part of mealtimes and in a position to do a bedside evaluation (Puntil-Sheltman, 2002).
Habitual dysphagia disorders respond best to early intervention. Teenagers in general are a difficult population to motivate changes in long-term habits. Changing swallowing habits of teenagers on the autism spectrum may be next to impossible. Speech-language pathologists need to provide early intervention for the evaluation and treatment of habitual swallowing disorders for students with autism spectrum disorders.
Dr. Marybeth Ames is a mother, author, and Speech-Language Pathologist. She has over 25 years experience in early childhood, school-age, university, geriatric, and medical settings. She can be reached at firstname.lastname@example.org.
Foxx, J., Mulick,M., & Jacobson, J. (Eds.). (2005). Controversial therapies for developmental disabilities: Fad, fashion and science in professional practice. New Jersey: Erlbaum.
Friedman, E. (2006). Gastroesophageal reflux disease: Serious illness potential often misunderstood. The ASHA Leader.
Hutchins,T., Gerety, K., & M. Mulligan, M. (2011). Dysphagia management: A survey of school-based speech-language pathologists. Language, Speech and Hearing Service in Schools.
Puntil-Sheltman, J. (2002). Medically fragile patients: Fitting dysphagia into the bigger clinical picture. The ASHA Leader.
Truman, B. (2010). Celiac disease. Retrieved January 1/3/13 from Discovery’s Edge: Mayo Clinic’s Online Magazine, http://discoverysedge.mayo.edu.
VanDahm, K. (2010). Early feeding intervention: Transitioning from acute care to early intervention. The ASHA Leader.
Van Dusen, A. (2011). Are you taking too many medications? Retrieved 1/3/13 from Forbes: http://www.forbes.com/2008.
This article was featured in Issue 53 – Working Toward The Future