Tag Archives: autism communication

Nonverbal Autism

7 Tips for Communicating with a Nonverbal Autistic Patient

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Nonverbal Autism

Just because a person can’t speak doesn’t mean they have nothing to say.

Communication is a basic human need. In fact, it falls fairly predominantly in the middle of Maslow’s Hierarchy of Needs, under “Social Belonging.” The ability to communicate makes it possible to exchange opinions, thoughts and meanings, enabling us to express ourselves and show our own points of view.

Autistic people with little to no speech have the same communication needs as the rest of us! As I teach in my autism training for emergency responders course, there is a huge misconception that being a nonverbal autistic is synonymous with “low functioning” autism, or even having a low IQ. In my experience, this couldn’t be further from the truth.

Nonverbal people often have extremely vibrant imaginations, intense emotions, passionate interests and a brilliant intellect. They just have to work a little harder and more creatively to convey these things in a neurotypical society that relies on spoken words and often-misread body language.

Communication on scene

When you arrive on a scene as an emergency responder, communication with your patient is vital. Where I work, I frequently face language barriers, making it challenging to obtain key information in order to treat the patient with the right protocols and do no further harm. The situation is magnified because the patients and their family members typically don’t understand what I am asking them, nor can they communicate what they are feeling and experiencing, and what medical interventions they need from me.

That’s one advantage (and another debunked myth!) of communicating with a nonverbal person on scene – nonverbal DOES NOT EQUAL non-hearing. This is a huge plus when your patient understands what you are asking.

Knowing this, here are some tips to communicate with a nonverbal autistic on scene:

  1. Use the caregiver. Find out from the caregiver if you can: what is their primary means of communication – what kinds of body language are they familiar with? Do they clap for yes? Do they use sign language? Gestures? Most times, family members are a WEALTH of knowledge on scene when it comes to autism.
  2. Seeing eye to eye. People with autism may not give you direct eye contact, but simply sitting or kneeling so you are at the same level as your patient speaks VOLUMES in gaining rapport. Sometimes that’s all it takes to help alleviate the fear of an emergency situation, therefore helping to get the person out of defense mode and more able to communicate with you in their own way.
  3. Narrate. It may sound silly, but even if you can’t communicate with your patient and get no response whatsoever, remember THEY CAN HEAR YOU. Unless it’s a critical patient, I will always announce exactly what I’m about to do to a patient, and continue to ask questions as I’m doing it, looking for any sign of understanding in their face or body language.
  4. Offer choices. Asking a nonverbal patient, “Do you want X (and point to or hold up what you are referring to) or Y? (point to or hold up the alternative choice)” can open lines of communication and help them feel more in control of the situation. Remember, the less they feel in control of what’s happening around them, the more a complete shutdown of the nervous system is imminent.
  5. Pen and paper. Simple, simple, simple… always keep a notebook and pen in your pocket! Sometimes even adults with autism that are verbal lose their ability to communicate under distress. The opportunity to write down their needs can make the scene run safely and smoothly.
  6. The Sign Expressions Language Mini Chart for Emergencies. This mini chart includes photos, words, and phrases to help facilitate communication during an emergency, including HELP, INTERPRETER, ALLERGIES, the Alphabet (Spanish and English) and Numbers. Our trilingual sign language mini chart is pocket sized (4″ by 6″) and include many important words to use during an emergency situation by First Responders, Health Care Professionals, and many others.
  7. Phone it in. Okay, not literally, but… our smartphones have become almost necessary on scene these days. They help us with language interpretation, drug calculations, pregnancy due dates, and of course, patient reports en route to the hospital. It may be helpful to also have an app for nonverbal autistics on your phone. Here is a list of apps available through iTunes, as well as Google Play.

Over to you…

Have you encountered a nonverbal autistic child or adult on scene? What worked for you? Share by commenting below!

autism echolalia

Autism Tips for Emergency Responders: Stop Echoing Me!

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autism echolaliaHave you ever had that one annoying sibling when you were growing up that would torture you all afternoon by repeating EVERY. SINGLE. THING. YOU. SAID? No matter what you did, you couldn’t get them to break. It was like Chinese water torture.

Whether an autistic person is verbal or nonverbal, you may encounter the same behavior on a scene… from an adult. You ask them for their name, some ID, and other typical questions, and all you get back are echoes of what you’re asking. What’s your first reaction? “This smart *** is being non-compliant! WTH!”

I assure you, even if you witnessed them speaking in complete sentences prior to your standard questioning, the anxiety and distress an autistic person experiences during an encounter with public safety can result in the loss of their ability to articulate at all.

It may appear that they are being disrespectful but they are NOT. They are trying to communicate the only way they know how. It’s called echolalia.

What Exactly is Echolalia?

Echolalia is the repetition of phrases, words or parts of words.  Naturally, younger children, while learning to talk, will “parrot” what they hear as part of the process. That’s not what I’m referring to.

There are two types of echolalia. You may be on scene with a teen or adult that is repeating back everything you are asking them instead of giving you direct answers. This is called “Immediate Echolalia.” For example, if you say, “Do you have any ID?” the person may immediately reply with, “Do you have any ID?” It will typically be in the same tone and inflection that you used.

By repeating back words, the person is actually demonstrating that they can hear you accurately, but may not immediately comprehend what you are saying.

According to friendshipcircle.org, some adults with autism explain that immediate echolalia is a way of communicating, “I heard what you said, and I’m still processing it.”  Immediate echolalia is an attempt to remain in a conversation and give an on-topic answer, before the meaning of the conversation is fully grasped.

How do you support increased comprehension? Use visual aids, and involve as many senses as possible, but be careful not to overload them with too much sensory input. Also be aware that if you are offering two choices and the person verbalizes the second choice, they may be REPEATING the last thing you said, not actually answering your question or making the choice.

Delayed Echolalia

Back to the scene, you may ask, “Do you have any ID?” and the person may respond, “Cheeseburger,” or a punchline from a joke or TV show. This is called “Delayed Echolalia.” A person with autism typically likes to memorize and recite catch phrases, verses, portions of historical speeches, or funny scenes from their favorite commercial or movie. Unlike a neurotypical person that will retrieve a funny one-liner from a movie and throw it out for humorous effect in context, delayed echolalia will rarely be relevant to the conversation at all.

My son seems to have a new catch phrase almost monthly. We’ll be walking the dogs together and a neighbor will wave and say, “How are you?” My son might reply, “I am a person.” because that’s what he’s been saying all month, regardless of what the conversation entails. It will be his answer to everything until he finds a new catch phrase to repeat.

You should hear the variety of responses we get to that ;)

Sometimes delayed echolalia occurs because it’s calming the person’s nervous system, a form of self-stimulatory behavior. Typically, however, it stems from wanting to participate in conversation but being unable to fully understand the content of what’s being discussed. 

As easy as it is to assume non-compliance, it’s critical to realize that both versions of echolalia represent a desire for inclusion in conversation.

Share in the comments below if you’ve experienced echolalia with anyone before!

autism no eye contact

Autism Tips for Emergency Responders: No Eye Contact

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autism no eye contact

image courtesy of freedigitalphotos.net

I read an awesome article on TheMighty.com that asked 16 different people on the autism spectrum to describe why making eye contact can be difficult for them. Any insights like this help me be a better parent to my autistic teens and a better educator for emergency responders.

Lack of eye contact may be considered rude or antisocial to those who don’t understand it. However, in an emergency situation that involves first responders, it can be misconstrued as evidence of guilt, non-compliance, or even altered mental status, all of which can put an emergency responder on the defensive and potentially lead to a call going downhill fast.

The Mighty asked their readers with autism who find eye contact difficult to share a description of what it’s like for them. I think some of these quotes are really helpful for emergency responders to be able to understand and identify what’s really going on when someone with autism cannot look at them. The full article can be found here, but some of my favorite descriptions are:

“It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl

“To me, eye contact feels like I’m being stared at, like I’m being scrutinized and judged. It makes me uncomfortable because I feel like I’m under immense pressure, and the tension builds and builds until finally I have to look away. It feels almost confrontational, which causes me a lot of anxiety.”— Emma Wozny

“It can feel like you’re standing there naked. It’s very difficult to form a coherent thought with all of this going on in your head. ” — Megan Klein

“When I make eye contact, the world around me blocks out. I can only process the immense pain and discomfort that comes to my brain. This pain goes if I look away.” — Lucy Clapham

“For me it can be a physical pain; it feels like burning with too many emotions, and I just can’t take it in all at once.” — Rosie Howard

“There’s plenty enough for us to concentrate on mid-conversation without the demand to do something which, quite frankly, feels very unnatural to many of us. You can have my eye contact, or you can have my concentration. Choose whichever one you value more.”– Chris Bonnello, from Autistic Not Weird

“Eye contact is hard for me because I am easily overwhelmed by lots of different input. When I am trying to listen, follow, or contribute to a conversation or just manage all my different sensitivities, it is easiest, most comfortable and least painful for me to not make eye contact. I listen and focus better when I am not making eye contact.” — Erin McKinney

My co-trainer at Spirit of Autism, Austin Harris, told me what it’s like for him, and how he’s learned to manage it:

“Eye contact is difficult for me because it makes me very nervous when I’m being looked at directly. It makes me feel uncomfortable in an unexplainable way. One tool I use to combat this is quick contact by looking at multiple people and objects. This works especially well for public speaking and teaching where you need to talk to the group instead of one person. What I do is I make brief contact every so often with different individuals so I am not focusing on just one person’s eyes.”

My daughter shared this with me about her experience:

“If I’m coming up on a person about to pass me, I drop my gaze immediately. If I happen to accidentally lock eyes with them, I feel a tinge of panic. What are they thinking? Are they thinking about me at all? Did I rub them the wrong way? I’d rather be invisible to them, and chances are likely that they thought nothing of it, but I remember it.

There’s something very uncomfortable about looking directly into somebody’s eyes while they’re staring at you. I don’t know what’s going on and I’m trying to evaluate the situation. And how long are you supposed to keep eye contact, anyway? If it’s too short, it may come across as dismissive; if it’s too long, it’s way too awkward. It’s a lot of processing and confusion that goes on underneath the surface in a matter of seconds, and when there are responses and replies expected of you on top of that, it gets to be overwhelming sometimes.”

I think the biggest takeaways for emergency responders when it comes to lack of eye contact are:

  1. If someone with autism isn’t looking at you directly it does not mean they aren’t listening.
  2. It can be physically painful for an autistic person to maintain eye contact with you.
  3. A person with autism may need to avoid eye contact in order to process and focus on what you’re saying to them.

Rather than demanding that someone look at you when you are speaking, it may be helpful to simply ask a person that’s not keeping eye contact with you if they are listening, if they understand you, if they can repeat back what you just said, or even if they’d prefer to communicate by writing.