13 Essential Strategies for Medical Care with Neurodiversity in Focus

What question do you wish people would ask more often?

My choice today is this, as an SLP and as a loved one of a person who has experienced recent medical care, I would love for someone to ask me:

“What approaches have proven effective for medical providers in supporting individuals with neurodivergent traits?”

Other ways to ask this question could be:

• “How can providers support the unique needs of neurodivergent patients?”
• “How can providers continue to expand flexibility when working with neurodivergent patients, so that neurodivergent individuals experience support and understanding when seeking medical care?”

Many medical, allied health, and behavioral health providers understand and implement many of the traits described below for caring for persons with neurodivergent patterns. These approaches can be beneficial to consider and apply more broadly, not just for neurodivergent patients, but for enhancing overall patient care.

The following suggestions aim to support providers in further tailoring care to individual needs, creating collaborative approaches that benefit all parties involved. The goal is to foster improvements in support for neurodivergent individuals, especially in high-stress or emergency settings, while ensuring optimal care through increased understanding and awareness.

 

 

The following effective practices have been observed among providers, and have been proven to be beneficial in enhancing patient care:

• Purposeful acknowledgement of neurodivergent traits and problem-solving for requests for accommodations when disclosed by patients, can be helpful. It can be helpful when a patient or caregiver discloses a neurodivergent condition; conversations with providers about how to find ways to prevent challenges or difficulties (and how to use strength factors to meet medical goals). This supports individualized care.

• High listening intentions, which validate patient experiences, are invaluable. It’s important to listen to and validate the experiences of patients and caregivers. Even if a patient’s responses seem unexpected for the situation, acknowledging their experiences can foster trust. Sensory sensitivities (e.g., to lights, sound, etc.) could also be anticipated and available, if requested and when indicated.

• Seeing a patients as whole beings, made of a variety of qualities, strengths, roles, challenges, past responses to approaches, cultural perspectives and history of diagnoses opens the door to treatment solutions which reflect beyond the singular. When a new diagnosis creates a doorway for elligibility for a setting’s stay, which may result in payor sources necessitating treatment for only one diagnosis, justifying how traits which fall in the neurodiversity realm can be accommodated supports the care for qualified reimbursement. When these complexities are addressed, patient care overall is supported, including the efficacy of care for the qualifying diagnosis. Providers, patients and caregivers alike benefit in seeking understanding of physical, mental, and emotional factors that affect a neurodivergent patient’s experience. This can offer a more holistic view of their care needs, going beyond stereotypes and emphasizing individual variation.

• Providers and listeners benefit when direct language terms are incorporated. Providers who utilize simple, direct language — and avoiding idiomatic expressions benefits all. For those who are not demonstrating neurodivergent traits, oftentimes, being in a hospital can be overwhelming in and of itself, so this approach aids in communication. The high-stress nature of a hospitalization or specialist appointment can be mitigated with clear, direct language.

• When providers understand the broader context of diagnoses, it enhances patient care. Not all neurodivergent individuals receive diagnoses early in life. Many may identify neurodivergent traits later or have traits that emerge under stress, or only under certain circumstances. Providers may benefit from offering resources for further evaluation rather than making assumptions about a patient’s self-identification.

• When providers coordinate for advanced notice to be provided (especially to patients and caregivers for time for processing) when transitions are planned, all involved are setup for more effective success. Advance notice about changes to routines and schedules can help ease transition. Neurodivergent individuals often benefit from structure and predictability, making this consideration essential.

• Adapted communication styles serve in the relay of reporting of medical concerns and requests. Providers who consider implementing communication preferences, such as dedicated augmentative/assistive (A/AC) devices and/or apps, typing, writing,  visual aids, or other methods — or even asking how to more effectively communicate, have improved interactions. Allowing extra time for processing and understanding alone may also, at times, enhances interactions. Providers who avoid interrupting during communication builds trust, and tends to lead to more comprehensive understanding. NICE SPEECH LADY TOOL: Prep-Communication Mechanisms Packet (Provider Visits) is one such complementary “preparation” document to discuss communication differences.

• Providers who respect self-reported diagnoses open the door to exploring how a new diagnosis is impacted by existing or suspected presentations or trends. Without questioning their accuracy, when factors are discussed openly, this keeps the dialogue open.  For many patients, receiving validation from providers is often an essential part of their healthcare journey. In addition, these interactions may be an opportunity to hear about other avenues for treatment, or in seeking clarity on questions which exist on the part of the patient.

• Individualized/alternative pain and other symptom assessments, when provided and navigated by providers, can add clarity and improved communication of severity of concerns. Pain thresholds and expressions of discomfort can vary widely among neurodivergent patients. Considering individualized approaches to pain and anxiety assessments, can help improve care. Some examples of preferred ways to rate pain include:

• • • The “Comparative Pain Scale,” (which demonstrates a different illustration face for each level of intensity for each represented number/descriptor),  “Visual Analog Scale,” and the Comparative Pain Scale — Jack Harich, all might be options to consider.

• • • For patients with limited verbal trends, or for very young patients,

• • • • the Face, Leg, Activity, Cry, Consolability Scale (FLACCS) and the Non-Communicating Children’s Pain Checklist – Revised (NCCPC-R), may be good choices to consider.
    • Also, utilizing the Wong-Baker Faces resources can be helpful.
  • • For patients with chronic pain who are interested in exploring a deep-dive into alternative pain-rating pursuits in descriptions, here is an idea: Ask about exploring The “Chronic Illness Pain Scale.” This measure may be particularly helpful for persons who experience chronic pain and/or may have difficulties with communicating pain. It is suggested in this case to consider pairing it with a faces scale when first learning how to use it (such as the Comparative Pain Scale Chart (Pain Assessment Tool) as above, or the Defense of Veterans Pain Rating Scale (health.mil) to discuss and illustrate the “non-chronic illness” side of the pain rating options/trends (in understanding what a “0” ranking of pain means in a person without chronic pain, and how it relates to a person who has a chronic pain syndrome). A benefit of the Defense of Veterans Pain Rating Scale is the color-coding, the escalation nature of the columns, as well as the word descriptions — in addition to the faces. A loved one or provider can aid in explaining that the right-column options describe chronic pain, while the left-column faces represent non-chronic pain (with use of a faces scale for reference). Seeing the representative number and face on the left and the corresponding version on the right might help those whose pain presentation may not be typical (and may be hard to navigate/communicate).

• Medical providers who explore workarounds to standard treatments aid in avoiding unnecessary medical sensitivities or trauma, particularly for patients who may have unique needs. An example would be to first consider a topical treatments instead of an injection, or relaxation sedation for difficult procedures. If providers consider optional interventions, this helps to prevent necessary care from being overwhelming to patients.

• Providers who prioritize the facilitation of accommodations of self-soothing needs can assist in managing different types of discomfort. Having sensory tools, such as weighted blankets, fidget devices, or noise-reducing tools, available can help patients feel more comfortable. Providers who consider asking patients or caregivers if any sensory aids might be helpful play a role in the patient and their team in encouraging self-advocacy.

• Planning of additional time for collaboration with the patient’s care team is a trend in providers who are able to build effective communication and trust with all involved. Involving caregivers or family members who understand the patient’s needs can help bridge communication gaps, ensuring more effective care. Asking questions to include those who facilitate different aspects of care, and including them, can be extremely helpful. Improving and coordinating care for neurodivergent patients is an ongoing learning process that involves a partnership between providers, patients, and families. It’s helpful to ask: “How can we make this experience easier?” promotes a safe environment for discussing potential challenges while maintaining the necessary care.

• Providers who provide additional time to seek consent prior to any physical exams, and allowing time to ask questions prior to these exams — tend to allow for more peaceful experiences for patients (as well as allowing time to provide this consent). Respecting patient boundaries is essential. Providers benefits when they consider asking before performing any examinations to find workarounds; collaborating with patients to find the most comfortable communication methods can be most helpful in outlier tasks which promote care.

In conclusion, At Nice Speech Lady, we recognize that many providers are already implementing these inclusive care strategies. We thank you all for what you are doing!

We encourage openness, curiosity, and collaboration as key components of improving healthcare experiences for neurodivergent patients. By widening our perspectives, we can all continue to grow in meeting diverse needs more effectively.

With many thanks,
— Nice Speech Lady

 

Wilson Nice is the owner of Nice Speech Lady, a medical SLP platform for SLP resources. Nice’s ADHD (and more) neurodiversity self-understanding has been a progressive discovery process. Nice has been publishing complimentary tools for medical SLPs since February of 2018. The most recent developments in her business has been the start-up of Nice Speech Lady’s Outpatient SLP Clinic in 2022, with help from her family (offering hybrid services in New Mexico, and virtually in North Carolina). Nice can be reached via message submission.

 

 

 

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References

Bogdanova OV, Bogdanov VB, Pizano A, Bouvard M, Cazalets JR, Mellen N, Amestoy A. The Current View on the Paradox of Pain in Autism Spectrum Disorders. Front Psychiatry. 2022 Jul 22;13:910824. doi: 10.3389/fpsyt.2022.910824. PMID: 35935443; PMCID: PMC9352888.

French B, Daley D, Groom M, Cassidy S. Risks Associated With Undiagnosed ADHD and/or Autism: A Mixed-Method Systematic Review. J Atten Disord. 2023 Oct;27(12):1393-1410. doi: 10.1177/10870547231176862. Epub 2023 Jun 21. PMID: 37341291; PMCID: PMC10498662.

Nicolaidis C, Raymaker D, McDonald K, Dern S, Boisclair WC, Ashkenazy E, Baggs A. Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. 2013 Jun;28(6):761-9. doi: 10.1007/s11606-012-2262-7. Epub 2012 Nov 21. PMID: 23179969; PMCID: PMC3663938.

“Types of Neurodiversity.” MEDvidi, https://medvidi.com/blog/types-of-neurodiversity. Accessed 12 Oct. 2024.

“Why Every Clinical Provider Should Have Training in Neurological Differences.” Western Tidewater Community Services Board, https://www.wtcsb.org/why-every-clinical-provider-should-have-training-in-neurological-differences/. Accessed 12 Oct. 2024.

 

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