Author: Phoebe Do
According to the Centers for Disease Control and Prevention (CDC), 1 in 59 children are diagnosed with Autistic Spectrum Disorder (ASD), causing hospitals to implement many new standards, procedures, and protocols to accommodate young patients with sensory challenges. Despite this, the collective team of hospital workers, family members of patients, and the patients themselves face a plethora of challenges. Of course, the experiences of those involved vary case by case due to different variables. For example, the severity of ASD in a patient will greatly affect the individual struggles faced by each character. Furthermore, the availability of hospital staff, specifically autism specialists including developmental pediatricians, pediatric neurologists, and child clinical psychologists may impact the amount of care available to patients. Money is another factor, with many hospitals lacking the funds to properly accommodate autistic pediatric patients. However, through trials and tribulations, the patient’s support system prevails and succeeds in providing the best medical care.
Challenges Faced by Patients
Heightened Emotions
For many people, the idea of a visit to a hospital is scary and uncomfortable. For a person with ASD and difficulty digesting new experiences, the sudden change of environment can be distressing. Many diagnosed persons on the autism spectrum experience hypersensitivity, typically towards noise and light. As a result, minor changes such as bright fluorescent lights and buzzing machinery may bother patients to the point of inducing major responses. In the case of thirteen-year-old Matthew, who is severely autistic and nonverbal, “hospital staff have had to physically restrain and even sedate him” at times to remove the threat of Matthew injuring himself and others (Austin Jenkins, NWNews). As aforementioned, the experience of each patient is distinct and directly dependent on the severity of their ASD. As an illustration, an individual with mild ASD, or high-functioning autism (HFA) may have speech and social delays, and thus only experience minor frustration when having difficulties expressing their symptoms during a hospital visit. But even if a patient may not lash out from their emotions, patients can still experience increased anxiety as a response to overstimulation and agitation.
Discrimination
All healthcare individuals and their coordinating organizations are taught, trained, and required to provide equal attention, treatment, and services to patients in need. Not only is this principle a moral obligation, but it is detailed in both the infamous Hippocratic Oath and all-powerful United States law. Despite the multiple layers of rules and regulations to prevent unequal treatment, discrimination still undeniably exists and is prevalent in the healthcare system. In addition to discrimination based on religion, ethnicity, and race, people with disabilities are also subjected to injustices. According to Stephen Simpson, a senior autism practitioner of the South West Yorkshire Partnership NHS Foundation Trust, disabled individuals are “three times more likely to be denied healthcare” and “four times more likely to be treated badly in the health care system”. Most shockingly, “people with autism die on average 12 years earlier than the general population”, with a large majority of early deaths caused by inequality in healthcare services.
Lack of Accommodations
Many hospitals simply lack the time, money, and resources to properly accommodate autistic patients. For instance, the loud and brightly lit waiting room is a common triggering space for persons with ASD. Despite this knowledge, most hospitals cannot provide a second space acting as a waiting room for autistic patients. Hence, most autistic children and their families must endure the stress of the waiting room. But if the “friendly” waiting room and its lack of accommodations prove to be difficult to endure, imagine the obstacles of inpatient treatment, the emergency ward, surgery, and other hospital settings may become for individuals with ASD. This is increasingly common in rural areas, towards which there are generally fewer and smaller medical centers that are less equipped to provide medical care.
Communicative Issues
Alongside heightened emotions, potential discrimination, and lack of resources in the hospital, communicative difficulties may further lower the quality of medical care for autistic patients. With young children, many already utilize their parents and guardians as a medium to translate their illnesses to doctors and nurses during medical visits. But what if the patient cannot even convey their illnesses to their parents? Regarding autistic children, many have hyposensitivity to pain, meaning their pain tolerance is high and they are thus unable to grasp how severe an injury is. Moreover, there are patients with communication problems, ranging from limited vocabulary to completely nonverbal.
Challenges Faced by Family Members of Patients
The Medical Bill
Longer stays, lack of healthcare coverage, and accommodations equate to more expenses. Additionally, individuals with ASD also suffer from other medical conditions, with the most common being “gastrointestinal issues, eczema, allergies, asthma, ear and respiratory infections, seizures, and migraines” (National Library of Medicine). As a result, hospital bills tend to run higher for families of autistic patients. Evidently, this would result in more frequent medical visits for persons with ASD. Unfortunately, PubMed Central indicates, “annual costs of healthcare among children with [ASD are] more than four times higher (14,061 USD vs 3020 USD) than those without [ASD]”. With high hospital bills, some families simply cannot afford needed medical care for their children, especially without healthcare insurance. But even with medical insurance, subsidiary and necessary autism services are often excluded from low-coverage insurance plans. Even though the United States federal government has gradually decreed insurance companies to increase coverage for autism treatments and services, the financial barrier for autistic patients still exists between them and their health.
Choosing Isolation
For many, the anxiety, worry, and risk of injury and trauma from a trip to the doctor are too much. Many parents and guardians tasked with the duty of upkeeping the health and safety of their child chose to forego medical care altogether in order to avoid meltdowns in the hospital. Especially if the family has less access to medical attention, they may choose to not put in the extra effort, time, money, and trouble to attain treatment for their autistic children. The fact that thousands of families hesitate to seek medical assistance, weighing in their minds if a hospital visit is worth the trouble, is saddening as all humans deserve healthcare.
The Challenges Faced by Healthcare Workers
Time is Money
The Marquette College of Nursing Faculty Research and Publication conclude patients on the autism spectrum generally have a higher frequency and longer duration to their hospital stays. Similarly, autistic pediatric patients typically are prescribed higher medicine dosages and receive more attention. Of course, autistic individuals are entitled to as much care, attention, and medication as they need. However, this may pose a problem when hospitals are full. At maximum capacity, the attention of hospital staff and resources are divided amongst more patients, causing conditions for stress and diminished care.
Lack of Cooperation
When overwhelmed, autistic patients, particularly children, lash out with levels of aggression. These tantrums may include hitting, kicking, biting, screaming, crying, scratching, and general unwillingness to cooperate. Clearly, this poses a risk of injury to both the patient and hospital personnel and is yet another obstacle in treating the patient. In severe enough cases, such as when a hospital begins to accumulate damages in furniture and machinery, the patient may be subjected to heavy sedation. Aside from being nonverbal and having other communication deficiencies, individuals on the autism spectrum may also be unresponsive. Unresponsive persons may appear unfocused and uninterested in social engagements causing extracting information regarding their symptoms extremely difficult. With limited information on the condition of the patient from the consultation period, doctors and nurses are oftentimes unable to treat patients properly.
Different procedures/dosages
As a result of the patient’s tendency to move or jerk during treatment, hospital staff may deem it vital to drug the patient. Similar to nitrous sedation during a wisdom teeth removal procedure, anxiolytic medication, an anxiety reducing drug, is often used to soothe the uneasiness of patients. This mild form of sedation is often used during certain procedures where sudden movement is discouraged, such as the administration of stitches or MRI scans. Although the medication is considered safe, all medicine has potential side effects and thus potential risks. In a patient with communication deficiencies or hyposensitivity to pain, it may be even more difficult to spot side effects as they may find it challenging to articulate their feelings. Knowing this, anxiolytic medication is a necessary means to an end, despite the unfortunate risks that accompany its usage.
Courses of Action
Most times, words and phrases such as “don’t worry” and “it’s going to be okay” are not enough to comfort the emotions of patients with ASD in a foreign environment. Thus, management, such as that of the Henrico Doctors’ Hospitals, has resorted to changing the environment itself by dedicating rooms in the emergency room wing designed to house autistic pediatric patients. The rooms were created with the main goal of lowering stimulation in persons with hypersensitivity to noise and light, in order to decrease anxiety. These new and highly innovative hospital rooms come equipped with:
Repainted walls using a calming shade of blue
LED lights, natural sunlight, and/or a light projector with a dimming option
Altered monitors and machines that do not make a constant beeping or buzzing noise
A sensory cart filled with safe and stimulating toys
Weighted blankets
Noise-canceling headphones
Perhaps most importantly, all staff members of the Henrico Hospital Emergency Room are trained to properly care for children with sensory and communication disabilities along with a certified child specialist in each hospital room.
Although the issue is grand, as the health of patients and the safety of staff are of utmost importance, the solution itself is rather simple. Small gestures such as reminding the patient and family of the staff’s availability and understanding will demonstrate their willingness to listen and accommodate to their specific needs. Evidently, communication is key during any medical visit and is even more crucial during medical consultations and treatments with autistic patients. Having more patience and giving more time may allow the patient and their families to better articulate the concerning symptoms, conditions, or ailments. Asking questions verbally or even in the form of questionnaires can help overcome communication barriers.
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