Improving Healthcare Encounters of Patients with Autism Spectrum Disorder: Taking the History

 

                Good history-taking can yield some of the most important fine-point details that can lead to a diagnosis. But aside from the usual questions you would normally ask in a history of present illness and past medical history, a very fine balance can be taken in order to extract information from both the patient and their caregiver if available. Such a technique is very important as the deficit in communicating ability of the patient can be compensated for by the next source that knows them best; the parent or caregiver. Serving as advocates of the patients, the caregiver can give you a good idea as to how the patient best communicates, which is important as the inability to communicate alone can sometimes trigger aggressive behaviors thereby compromising the patient’s safety.¹ The caregiver can also clue you into the patient’s likes and dislikes in terms of factors that would exacerbate the patient’s sensory sensitivities such as touch, texture, smell etc.;¹ this way you can make adjustments to the exam room and your approach to the patient in order to make them feel more at ease in your care. The importance of this contribution is even demonstrated in the proposition by the literature on the use of a “Quick Tips Card”, which highlights these details for the caregiver (especially if they are not a family member or are as familiar with the patient) and the provider in the same way patients bring a list of medications with them to the doctor’s office. This modality of communicating was found via survey studies to be effective by both medical providers and caregivers of individuals with ASD.²

                In addition to these communication and sensory preferences, the caregiver can also clue the provider into the patient’s overall baseline. Specifically, changes in the patient’s behavior, communication ability, social interaction, dietary habits, medication use, and sleep pattern among other factors can possibly suggest the cause of their chief complaint.¹ Even information regarding the patient’s menstrual history, over-the-counter medication use, and vaccination history could yield helpful information pivotal to making a diagnosis.¹ As a result, such a partnership between the patient’s caregiver and the provider can prove to be very helpful in making a diagnosis. In fact, survey studies of healthcare practitioners that care for children with ASD cited this partnership as being the most helpful perceived resource for helping them care for these patients.² Even if no caregivers or parents are available to help you learn about the patient, providers can always learn great information about the patient’s baseline through those who work with them at school, work, or residential facility should they live in one.¹

                However, make no mistake, this does not mean that providers should be taking the patient out of the equation completely when taking their history. On the contrary, the most reliable and important source of information on the patient is always the patient themselves. That is why initial questions should be directed to the patient first to ask how they are feeling and then to assess if the patient knows and/or can communicate why they are being seen before ever directing questions to the caregiver.⁴ However, after the provider has reached the patient’s limit in ability to provide information, the caregiver or parent accompanying them is a great second resource.

Directing questions to patients with impairment in communicative abilities, can be done through the use of short, direct, and simple questions like “Does your head hurt?” as opposed to multistep directions like “Point to where it hurts”³. Such multistep questions like these can be overwhelming for patients, especially those with intellectual disability, as they require the patient to locate the pain subsequently try to make this location known to you. In addition to this, the use of visual aids such as picture stories or schedules and communication boards can also be used to foster communication between the provider and the patient.¹

I make this point to emphasize the fact that the empowerment of the patient themselves and encouraging them to take as much of an active role in their care as their abilities will allow is very important for the therapeutic relationship. For this reason, eliciting information from the caregiver should be done in a manner that directly engages the patient. For example, if I wanted to learn more about how patient Charlie normally communicates his thoughts, I can say to him, “Charlie, I’m now going to ask your Mom how you and I can talk together.”¹ This is a better alternative to just asking Mom directly how Charlie normally communicates because it brings him back to the center of the conversation, empowering him as the patient seeking care.

                                                                                                        Alexis Matarangas   DUCOM 2019             

 

REFERENCES

1.  Venkat A, Jauch E, Russel WS, Crist CR, & Farrell R. Care of the Patient with an autism spectrum disorder by the general physician. Postgrad Med J 88, 472-481 (2012).
2. Bultas MW, Mcmillin SE, & Zand, DH. Reducing Barriers to Care in the Office-Based Health Care Setting for Children with Autism. J Pediatr Health Care 30, 5-14 (2016).
3. 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).
4. Jain S. Care of patients with disabilities: an important and often ignored aspect of family medicine teaching. Fam Med 38, 13-15 (2006).