By Anita Lesko, BSN, RN, MS, CRNA, CAS (and proudly on the autism spectrum)
Currently, 1 in 44 children in the US are diagnosed with autism, with many more children and adults being missed or receiving a diagnosis later in life as adults. This means a high percentage of individuals bring seen in hospitals, pediatrician or primary care offices, emergency rooms, and other healthcare settings have sensory and communication differences that need to be understood and addressed by providers.
Lack of specific training and knowledge in the healthcare field is constantly leading to people with autism not being diagnosed or treated properly as well as often avoidable situations that impede timely or effective care. The experience of a person with autism starts when they arrive at your facility and first get to intake, so the importance of training does not stop with the medical staff. It actually starts with the non-medical staff in intake, as often times overwhelm can start before the person with autism has even seen their healthcare provider, adding sometimes insurmountable challenges to effective care.
It is called Autism Spectrum Disorder (ASD) for a very good reason. There are autistic individuals who do not verbally communicate, or need total assistance with activities of daily living, and others who need no assistance at all. There is a wide range of needs, skills, and co-occurring disabilities within the autism community.
How do These Differences Apply to Healthcare Providers?
The vast differences between individuals with ASD can be quite challenging to healthcare providers, and is the biggest source of misunderstanding between providers and patients. Not every child will have difficulties with communication. Some have no ability to speak, while others have extreme ability to talk about their favorite interests in great detail. For those that can talk, they may have difficulty using language effectively when talking to others. They may also have difficulty processing what they hear, and not understand what was said to them.
For example, if an autistic child or adult is given verbal instructions on how to complete a task, they might not understand how to do it. Yet, if they are given an actual demonstration of doing the same task, they are then able to successfully do it themselves. It’s not uncommon for parents to think their child has hearing issues, because they don’t respond when spoken to. They then take the child for hearing testing, only to learn there is no hearing deficit.
The vast differences between people on the autism spectrum is one of the biggest reasons why I have pursued my own certification in autism through IBCCES to become a Certified Autism Specialist™. I know that not everyone’s experience on the spectrum is like mine, and many people’s experience is actually quite different.
This helps to make sure that I know that when I meet someone new on the spectrum and I don’t know their sensitivities or background that I am properly prepared to relate to them in the way that is best for them.
The Very Important Missing Pieces of Communication for Many with ASD
People with ASD also face challenges understanding body language, as well as the nuances of vocal tones. Body language is the second form of communication that humans use to express their thoughts, emotions, and desires. Those with ASD typically have difficulty at best, but usually no skills at deciphering what a person is saying with facial expressions or body language. There is also the lack of the ASD person of making eye contact. Many in fact will describe trying to look someone in the eye as literally being painful.
This is why it is all the more important that healthcare providers are aware that they need to express as much as possible of their message in ways that will be most easily understandable by that patient, which is not always the same. Learning how to adapt to each patient is important to optimize outcomes for healthcare provider and patient alike.
Now that you have an overview of the communication difficulties of those with ASD, you are wondering exactly how are you going to be able to effectively interact with your next autistic patient, wherever they may be on the autism spectrum. The ASD patient may appear not to hear what you say to them, they may not respond to their name, or they may appear indifferent to any attempts you make at communicating with them.
Tips for Communicating with an Autistic Patient
Step 1: Reduce Unnecessary Sensory Input
The first thing which is often very helpful is take the ASD patient and their parents/support person to a very quiet, private room where it’s dimly lit with minimal medical equipment in the room. There shouldn’t be other patients or staff in the room. You want to create a relaxed, peaceful environment. That in itself will usually calm the individual down. This will help to decrease the amount of sensory overload that is affecting the patient.
Step 2: Figure out how that Patient Communicates Best
The next thing you need to do is ask the parent how the child/adult typically communicates. They can provide a baseline expectation of how the patient will react to you. Observe the way they communicate with their parent or whoever they are with. You will be able to observe if they use words or any type of gestures. Ask them for suggestions on how you should approach the patient.
Remember, that parent is with that child 24/7 and knows their every move. They are your best resource for your patient.
You can also use this time to get the patient’s medical history.
Additionally, by allowing the patient to observe you talking to their parent, you will be establishing trust with them.
Say less and say it slowly- But not too slow!
- Limit the amount of words you use to communicate with the ASD patient.
- Use key words that are specific to the situation. You may need to repeat and stress them, and accompany your words with simple gestures such as pointing.
- If the patient has only recently begun to use words, you might only be able to use single words. Be sure you have their attention, or words will have no meaning.
- You might need to pause between words or short sentences to allow them time to process what you are saying. Being out of their routine and in an intimidating setting, they might need longer to get their words out. Be patient and allow them time to put their thoughts into words. Your flexibility can reduce their anxiety and make the situation a whole lot better!
- If possible, use simple gestures and visual supports- Visual supports would include pictures showing a procedure like taking a blood pressure, or a doctor listening to a patient’s lungs with a stethoscope.
- A word of advice is to presume competence. Approach the situation as if the patient can understand you. That is simply showing respect towards the individual. I have personally heard many an autistic individual express distaste towards healthcare providers who start out talking to them as if they are severely mentally challenged.
- Be careful not to use figurative language – Sarcasm, idiomatic expressions, or read-between-the-lines won’t work. ASD people take things very literally.
How an ASD person communicates depends on what they are hearing. Dr. Temple Grandin describes her hearing like having a sound amplifier set on maximum loudness. Her ears are like a microphone that picks up every little sound. She describes being unable to talk on a phone when in a crowded place such as an airport. If she tries to tune out all the background noise she also tunes out the person on the phone.
Another point to be made is that of an ASD patient wishing to use written communication as their means of interacting with the healthcare team. Some individuals will feel more comfortable using either hand-written notes or a keyboard of some type to communicate their needs to you. In any case, remain flexible and show your willingness to provide accommodations to the patient. And again, incorporate the parent or support person in the patient’s care. By doing so, that will go a long way in the patient’s trust in you.
Showing your knowledge of autism will result in a very positive experience for the ASD patient, and yourself as well! Written communication may be in the form of writing on a piece of paper or pad, texting from their phone, an iPad or similar device, or a laptop computer. Whichever one they choose, simply go with the flow, allow them time, and be patient. Keep in mind that the person probably feels anxiety, self-conscious, and may be having great difficulty processing everything that’s going on.
Limit Staff Exposure to Only Necessary Staff for Effective Treatment
Another factor to aim for is to limit the number of healthcare workers caring for the ASD patient. Introducing new staff to the patient will add significant stress to them, so try and keep the number of staff to a minimum.
Provide simple and straight-to-the-point instructions.
ASD patients often misunderstand complex instructions. They typically cannot read between the lines. They will take everything literally. You always need to say exactly what you mean. If you are trying to hurry the ASD patient by saying “Step on it!”, don’t be surprised if they ask what do you want them to step on.
Simplify your sentences and be straight-to-the-point. If they ask questions, keep your answers direct and to the point as well.
A Word on Dysgraphia
Some children with ASD also have dysgraphia, or written expression disorder. This learning disability impacts a child’s ability to write and spell without affecting their reading ability. Many people with dysgraphia have higher than average IQ. In young children it can show up when learning how to write. In older children it may surface as having a hard time putting their thoughts on paper even though they are orally able to explain their thoughts.
Healthcare providers never know when they will have a patient with autism come in. Also, so much focus is on children with autism, it is easy to forget that there are millions of adults with autism out there in the world who will also come in for healthcare services. At any time, you may have an autistic adult as your next patient. Hopefully, this article will be a good start to help you be prepared to handle the situation.
While this article can help individual practitioners to be more aware and better treat people on the autism spectrum, there is no substitute for system wide training to ensure that no matter who an individual with autism is getting treated by, that provider is also aware of how to approach someone with autism.
The experience of a person with autism starts when they arrive and first get to intake, so the importance of training does not stop with the medical staff. It actually starts with the non-medical staff in intake, as often times overwhelm can start before the person with autism has even seen their healthcare provider, adding sometimes insurmountable challenges to effective care.
Learn more about how your whole staff can be properly trained to be able to streamline care and make it more effective for your staff and people on the autism spectrum by inquiring below.
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My Experiences with Visual Thinking Sensory Problems and Communication Difficulties. Dr. Temple Grandin