Guest post by Kristine Kenny, MSN, RN, CPN, CAS
The majority of healthcare settings across the United States and worldwide are not set up for people on the autism spectrum. However, they are set up for people who are deaf, blind, and non-English speaking individuals. This is an inequality and obstacle for those with ASD (Autism Spectrum Disorder).
Research states that autistic people experience poor physical and mental health along with reduced life expectancy compared to non-autistic people. This is considered a health disparity. The CDC defines health disparities as preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups and communities. Studies have shown that adverse outcomes for ASD clients not receiving proper care include untreated physical and mental health conditions, more extensive treatment or surgery related to late presentation, and untreated potentially life-threatening conditions.
Healthcare Barriers of Those With ASD (And How to Overcome Them)
There are many barriers for those with Autism Spectrum Disorders (ASD), and accessing healthcare should not be one of them, but unfortunately it is a huge concern and problem for this population. Here we will look at common healthcare barriers that exist for those with ASD and discuss strategies for dealing with them.
Communication is the largest barrier for the ASD client and the healthcare provider. Individuals who meet the diagnostic criteria for ASD have some form of atypical communication. However, ASD is a spectrum disorder, and a wide spectrum of communication abilities exists among this population. Not all people with ASD are the same and all communicate in diverse ways. The degree of communication impairment is different in each person. Some can speak well, some functionally, some with a communication device, some not at all. This fact can make assessing someone with ASD in healthcare extremely challenging for the person with ASD and the healthcare provider. Additionally, as the person’s illness or pain progresses, their anxiety will increase and their ability to communicate will decrease.
The second big barrier lies within the healthcare providers- doctors, nurses, other medical personnel, etc. And their ability to communicate effectively with the person with ASD. AASPIRE states that healthcare personnel need to understand that even if a person with ASD cannot speak it does not mean they do not understand. Healthcare systems are not set up for people with ASD, however, do provide services for the blind, deaf, and non- English-speaking clients. Due to the wide variety of communication needs for this population, this has become incredibly challenging in the fast-paced world of healthcare.
Environment and Sensory Needs
Healthcare environments are very dynamic places. From the moment you walk into most facilities- most people are met with bright lights, loud noises, and strange smells. These environmental physical barriers occur before the person has even been examined or cared for. This can be extremely anxiety-producing and distressing.
Research states that the impact of the environment cannot be underestimated for those with ASD. Sensory difficulties and integration are a component of the ASD diagnosis that often gets overlooked. The overexposure to the environment, along with illness or pain can lead to challenging behaviors in a healthcare system. These behaviors can include extreme aggression and self-injurious actions of the person with ASD.
Lack of Knowledge of Healthcare Providers and Ancillary Staff
Autism Speaks states it is important for parents to know that outside of autism specialty centers or offices that are specifically tailored with the autistic person in mind- most healthcare providers are not familiar with the special needs of your loved one with autism. This barrier exists because the rise of ASD diagnosis has increased tremendously over the past few decades. Medical schools and nursing school's curricula have not caught up with learning how to care for this group of clients. This narrative is changing slowly; however, it is going to take some time.
Strategies to Deal with Healthcare Barriers
Some people feel defeated as there is nothing they can do to help with these barriers and may choose not to go to the doctor or enter a healthcare system unless it is an emergency. Please note that even though right now, not every healthcare system is set up for ASD patients, there are actions that we can take to deal with these barriers.
First things first
An established form of communication needs to be established at the beginning of the visit. This is a critical component for the care team to be aware of right from the start. Due to the fast pace of healthcare systems, professionals tend to talk fast and use a lot of unfamiliar medical terminology. This is not appropriate or meaningful to the patient with ASD.
Preparation for the visit, if non-emergent.
- Preparing yourself and your loved one is vital to obtaining the best possible visit, whether that be a doctor's office or a hospital setting. We recommend Autism Healthcare Books. These visual communication books are a great tool to help with medical visits written by a registered nurse and mom of a child with ASD.
- See our article on How to Prepare Your Autistic Child for a Trip to the Doctors.
- If the visit to a healthcare facility is emergent, I recommend advocating for your loved one as if their life is dependent on it. Because it most cases, it does – especially with emergencies. Stay with your loved one at all times so you can be their voice.
Advocate, Advocate, and Advocate some more
- Educate yourself on the American Disability Act and what your loved one's rights are in a healthcare setting.
- See our article on How to Advocate for a person with ASD in a Medical Setting
- Do not be afraid to make adjustments as you see fit to the environment you are in with your loved one.
- Request a private room or at least a “quieter” area where your loved one can wait.
- Request that the healthcare team have only one person talk at a time and try not to talk to the patient while other noises are present.
- Avoid having multiple healthcare providers unnecessarily examine the child or adult with ASD, particularly in teaching hospitals.
- Control the sensory environment as much as you can. Examples are dimming the lights, turning off the TV, and regulating the temperature in the room.
- If it is a non-emergency visit, bring things from home that comfort your loved one. Objects to reduce or increase sensory stimuli.
Looking for more information, you will enjoy these:
- How to Prepare Your Autistic Child for a Trip to the Doctors
- How to Advocate for your Child with ASD in a Medical Setting
- Autism 101- What is Autism Spectrum Disorder
- Tips to Enjoy the Holidays with an Autistic Child
- How to Connect With Parents (Locally and Worldwide) After an Autism Diagnosis
Understanding strategies for healthcare barriers is the foundation of empowerment as you navigate the complicated system of healthcare. It will also help you to keep your expectations in check. Most importantly, know that you know your loved one best and that you, as the caregiver, are an essential part of the healthcare team. Your voice and actions matter.
Kris is a mom of 3, one of whom has autism. She is a pediatric nurse, assistant nursing professor and author. When she has free time, she enjoys exercising, baking and binge watching TV series. Learn more about her at Autism Healthcare Books!
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