Dwight Johnson ‘22 is majoring in biomedical engineering with a minor in chemistry and is a 2021-22 health care ethics intern at the Markkula Center for Applied Ethics. Views are his own.
Discrimination in health care has always been a problem. Usually, the initial thought of discrimination involves race, ethnicities, and religion, however the discrimination in healthcare reaches further than just those issues. It also involves the discrimination of people with disabilities. On average, these individuals are “three time more likely to be denied healthcare” and “four times more likely to be treated badly in the health care system.” These inequalities directly portray the lack of justice among the disabled population, however these issues extend further to show that there is also a lack of autonomy and beneficence in healthcare for the disabled population.
Every disabled person in the U.S. is directly impacted, especially those with autism spectrum disorder (ASD). The reason the ASD community feels such an amplified impact by the inequalities of the health care system is because the population of people with ASD is continuing to grow. In the year 2000, one in 150 children were diagnosed with ASD. However, in the year 2018, one in 44 children had ASD.
Individuals with ASD need specific and special treatment from providers due to the nature of their disorder, and the lack of care that these individuals receive tremendously impacts their lives. ASD can cause complications with an individual's health, so much so that currently “people with autism…die on average 12 years earlier than the general population.” Some of these complications can be unforeseen and untreatable, however a majority of these causes of an earlier death stem from the unequal care provided to them by healthcare professionals. The healthcare system needs to be adjusted in order to fix the systemic issues involved with the unequal and unethical medical treatment of individuals with ASD.
The issues involved with the treatment for ASD individuals are so apparent that they are felt on both sides of the patient-physician interaction. Patients have spoken on behalf of their interactions with healthcare providers stating, “I have gotten the distinct impression that all of the physicians that I have seen have no clue what autism means or entails or how that should change how they treat.” Not only that, but “both patients and supporters described decreased patient autonomy due to healthcare providers communicating with supporters instead of patients.” Then on the physician side, it has been stated, “most clinicians felt ill-equipped to treat autistic adults.”
These examples are anecdotal, however they stem from the systematic discrimination from the health care system of people with ASD. There are many more instances in which patients with ASD felt unheard, not cared for, and overall unhappy with their experience with medical treatment. In addition to this, physicians also feel unable to provide proper care for their ASD patients. Therefore, this is a very pressing issue that needs to be solved in order to help both healthcare providers and people with ASD have an all around better experience when receiving care.
There are some interventions that are currently being implemented to help people with ASD receive better medical care. A checklist questionnaire that ASD patients can fill out prior to attending an appointment has been tried. This questionnaire serves the purpose of gaining a better understanding of the preferences of ASD patients in order to make their appointments more comfortable. A second implementation is being done by the University of Utah. They have created a specific clinic entirely designed for people with disabilities. Clinics specifically designed for people with disabilities is a great direction to head toward, not only for the University of Utah, but for all of health care.
We continuously see other specialties branching out to have a much more specific role in their medical treatment. Why can’t there be a specific branch of medicine designed to help individuals with disabilities? The treatment for people with disabilities greatly differs from treating non-disabled patients and this would be a great way to lessen the systematic discrimination of people with disabilities in receiving adequate medical treatment.
Perhaps the total creation of a new branch of medicine is too extreme, however at the very least healthcare professionals should be required to obtain further education in regard to treating patients with ASD. Overall, there is prevalent discrimination in the health care system that is directly impacting people with disabilities–namely ASD. There needs to be a change in the health care system that enables disabled people to receive the medical treatment they need, without facing all of the discriminatory factors that are currently in place.