The science surrounding neurodivergence and intellectual or developmental disabilities (IDD) and its influence on a person’s medical care is evolving daily. Widespread attention to this matter is warranted, given that it’s estimated 15% to 20% of the population may have some form of neurodivergence.
According to the National Institutes of Health, IDD often refers to situations where physical, emotional, and intellectual differences are present. These conditions may affect the nervous system, sensory system, or metabolism. IDD applies to those with a diagnosis.
While the definitions and conditions of neurodivergence can vary, The Cleveland Clinic generally describes the term as “people whose brains develop or work differently for some reason.” Additionally, “that means they have different strengths and challenges from people whose brains don’t have those differences.” Although this definition can apply to people with diagnosed medical conditions, it also applies to those without a diagnosed medical condition.
Below are some common conditions among those who identify as neurodivergent or have IDD.
- Autism spectrum disorder
- Attention-deficit hyperactivity disorder
- Down syndrome
- Dyslexia
- DiGeorge syndrome
Patients who have IDD or neurodivergence may face unique challenges in cancer care. Compared to patients who are neurotypical, they’re more likely to be diagnosed at a later stage, have delays in care, and have fewer treatment options. These gaps in care can be detrimental and affect quality of life.
According to Melissa Levin, MSW, LICSW, senior clinical social worker at Dana-Farber Cancer Institute, the fast-paced environment of a cancer care center can be overstimulating and inaccessible for these particular patients. Additionally, the emotional stressors of a cancer diagnosis are often amplified in patients in this population, making it increasingly difficult to navigate treatment and ongoing care.
Some patients with IDD may have extra difficulty communicating with their care team about their cancer; additionally, some patients with IDD may have increased sensitivity to treatments and side effects that can affect their medication adherence or survivorship protocols.
Levin states that comprehensive, inclusive, personalized care catered to each patient’s strengths and neurodevelopmental profile is critical in advancing health equity for patients with IDD and neurodiversity.
For medical practitioners, caregivers, and medical facilities, greater steps can be taken to improve accessibility and inclusion. For example, Dana-Farber’s new Neuro-Inclusive Oncology Care and Empowerment Program uses tools including visual aids, physical and sensory accommodations, and counseling to support patients.
If you’re neurodivergent and facing a cancer diagnosis, know that there are resources designed to help you through the different stages of your diagnosis. Dana-Farber compiled a list of frequently asked questions that you can bring to your care team to help prepare you for upcoming visits.
For additional resources, check out the following organizations dedicated to supporting and empowering people with IDD and neurodiversity.
- Autistic Self Advocacy Network
- Self Advocates Becoming Empowered (SABE)
- DisabilityInfo.org
- Adult Patient and Family Advisory Council
If you would like to connect with an Outcomes4Me oncology nurse practitioner at no charge through the Outcomes4Me app, using the “Ask Outcomes4Me” button.
