Improving Healthcare Encounters of Patients with Autism Spectrum Disorder: Making the Diagnosis

So we’ve taken our history and performed the physical exam, but having this data alone does not yield the diagnosis. It is important with all of this data to step back and look at the entire clinical picture in order to understand what is truly going with the patient with ASD that seeks care from you. Commonly, patients in this population that have a hard time communicating tend to present with an overall picture of agitation, yet each individual patient may have different etiologies that are causing this clinical picture. This phenomena is described in the literature as the “tip of the iceberg crisis behavior” presentation in which the patient presents with an observable acute agitation that is driven by an underlying cause that is not apparently obvious.¹ Many different etiologies can cause such challenging behaviors which fall under the categories of medical causes, psychiatric, sensory and self-regulatory causes, communication difficulties, trouble related to social skills deficits, academic causes, and environmental changes.

GI & Endocrine	Respiratory	Infection	Neurologic	Misc.
GERD Obesity Constipation Poor nutrition Hypothyroidism	Sleep apnea Asthma	UTIs Ear infections Dental infections	Enuresis Encopresis Headaches Sleep problems	Undetected injuries Pain from poor hygiene/care Juvenile RA Hyperlipidemia

Medical causes are the first category mentioned that should be investigated and ruled out before preceding any further as these are typically rectifiable causes that can often go unmissed and can be causing the patient a great discomfort. There are many possible medical etiologies that can present as acute agitation in patients with ASD, many of which are listed in the table to the right. Seeing how broadly these different etiologies spread in terms of severity of the condition and the body system affected, it is important that the initial evaluation of these individuals should include a thorough physical exam and the checking of preliminary vital signs and a blood sugar reading.¹ Depending on how these results present together with the overall history of the patient’s present illness, the provider should consider ordering screening lab tests for electrolyte abnormalities, infection, and possibly imaging studies before moving on to investigating non-medical causes.

Acute agitation can also result in patients with ASD as a result of a number of different non-medical causes. It can occur as a result of psychiatric comorbidities including anxiety, depression and affective disorders; trouble communicating, academic difficulties including an underlying learning disability; self-care skill deficits including toileting issues (which may indicate trauma, abuse, medical or psychiatric issues all in itself), or social skills deficits related to bullying at school.¹ For this reason, it is very important to get information from caregivers and people the individual works with outside of home in order to determine if there have been any changes in the patient’s family or social circumstances. Even changes in the physical environments related to these individuals that work with the patient can be underlying causes of the patient’s behavior, as chaotic overstimulation in the community environment can cause these individuals to retreat in a potentially inappropriate or dangerous way.¹ This is why, for these patients, it is very important to take a detailed social history taking into account any changes that could be throwing these patients off-kilter resulting in this agitated presentation.

Thus, it is apparent that this installment in the “Improving Healthcare Encounters of Patients with Autism Spectrum Disorder” series is essentially a call to honing our skills from the previous two chapters: the history and the physical exam. This is mainly due to the atypical communicative, social, and sensory attributes of these individuals; allowing any etiology to be potentially involved in a patient’s given presentation. This concept is beautifully described Thompson and Lubinski’s (1968) differentiation between the topography and the function behavior. The topography of a behavior is essentially what the behavior appears to be on the surface, in the same way a topographical map of a given terrain tells you what the surface of that area looks like. The function of the behavior meanwhile, is the purpose the behavior serves to fulfill in its performance. This classic article further describes topography of behavior as three different behavior types including the elicited (which is determined by what came before), the emitted (operant/result of consequence), or the evoked (induced by temporal arrangement of the stimuli); as it further describes the function of behavior also as three different types including the antecedent, current stimulus circumstances, and response consequence.² These three behaviors and these three functions of behavior can be paired with one another in any combination which means that topography does not predict function, nor vice-versa. Now what does any of this have to do with what we have just learned? Consider the following illustration and you’ll soon find out:

Pictured here are the similarly-designed bedrooms of two different boys. Look at how organized they are – they both must have cleaned their room! Seeing as this behavior of cleaning the room looks the same, the topography of the behavior is then the same. However, the boy with room A cleaned his room because messiness and clutter tends to stress him out – how hard it is to find the things he needs! Meanwhile, the boy in room B cleaned his room after his mom promised she would get him the newest video game console as a reward. With these two new pieces of information, we now realize that although the topography of the behavior (cleaning the room) of these boys is the same, the function or purpose that this behavior serves is in fact very different!

We can apply this very same concept to what we have been talking about. Although the presentation of acute agitation and defensiveness can appear to be the same or nonspecific on the surface, meaning the topography of the behavior can be similar among these individuals; the true hidden cause behind this presentation, or the function of the behavior can be a many number of different etiologies as described previously. This is why, in taking your history and physical exam, it is important to take a very wide and broad approach to these patients – ruling out the medical and more readily identifiable and correctable first and then subsequently delving into nonmedical causes. This way, you can be sure to narrow in on the patient’s true cause of distress and can accurately address it resulting in better outcomes of care.

                                                                                                         Alexis Matarangas   DUCOM 2019

REFERENCES:                               

1. McGonigle JJ, Venkat A, Beresford C, Campbell TP, & Gabriels RL. Management of agitation in individuals with autism spectrum disorders in the emergency department. Child Adolesc Psychiatr Clin N Am 23, 83-95 (2014).
2. Thompson T & Lubinski D. Units of analysis and kinetic structure of behavioral repertoires. J Exp Anal Beh 46, 219-242 (1986).