Communicating with Your Patients with Autism

By Anita Lesko, BSN, RN, MS, CRNA

It is called Autism Spectrum Disorder (ASD) for a very good reason.  There are individuals at one end of the spectrum who cannot speak, or need total assistance with activities of daily living, and at the other end of the spectrum are highly gifted people who are brilliant and need no assistance at all.  There is a wide range of symptoms, severity of those symptoms, skills, and level of disability.

The word “autism” has its origin in the Greek word “autos,” which means self.  Children with ASD tend to seem as if they exist in a private world, self-absorbed, unable to successfully communicate with others nor interact with them.  Children with ASD may have difficulty developing language skills and understanding what others say to them.  Additionally, they might also have difficulty with nonverbal communication, such as eye contact, facial expressions, and hand gestures.

It can be quite challenging to healthcare providers the vast differences between individuals with ASD.  Not every child will have difficulties with communication.  Some have no ability to speak, while others have extreme ability to talk about their favourite interests in great detail.  For those that can talk, they typically 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.

People with ASD are also unable to understand body language, nor 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.

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 the autistic patient

The first thing you need to do 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 calm the individual down.  You will be decreasing the amount of sensory overload that is affecting the patient.

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.

Written Communication

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.

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 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.

In Conclusion…….

Healthcare providers never know when they will have an autistic patient.  Also, so much focus is on autistic children, it is easy to forget that there are millions of autistic adults out there in the world.  At any time, you may have an autistic adult as your next patient.  Hopefully, this article will help you be prepared to handle the situation.

Anita Lesko, BSN, RN, MS, CRNA (And Proudly Autistic!)

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