Emergency Responders

If you have a medical emergency, please understand the following about your autistic patient. (Links will take you to additional medical references on other sites, so that you can cross-reference and document, if necesary.)

The main thing (aside from life-saving helo that responders provide, of course) is to keep anxiety at a low level. The way to do this is by keeping the individual's stress level down. This is more than trying to manage stress. Depending on one's perspective, it it important to see it as a matter of either a) doing what is necessary to help you do your job or b) helping them stay calm and relaxed, so they have a better experience. Either way, it's critical to keep their anxiety down by managing their stress.

Detecting Stress

Detecting stress is easier said than done, because the typical signals that tell most people "she is getting stressed out!" are not always the same signals in a person with autism. The indivisual may (at best) have difficulties articulating feelings, emotions, senses, thoughts, etc in a way that you may relate to. The other side of the coin is that they may be non-verbal. Being able to visually identify stress in your autistic patient is important.

Changes in behavior are not unique to those on the spectrum. What is, is the nature of the behaviors may not look like "stress". A quiet patient may become quite talkative. A very upset patient may become very calm. These are only a couple changes that could be easily misinterpreted as "feeling fine". When working with a spectrum patient, be alert to any change, especially if it is quite different in what seems to be an opposite way. Other good signals is a talkative patient becoming very calm. an intelligent, inquisitive patient who appears "closed". When a patient is alert but chooses to keep their eyes closed when talking or talks with their head turned to the side or can not look at the person whatsoever.

A trait that is fairly consistant for those on the spectrum is that eye gaze, or "eye contact" is often considered poor in those on the spectrum. This is not necessarily the case. More specifucally, the more tense a spectrum individual is, the more difficult it is to maintian eye contact. Use caution though, because some on the spectrum also "look away" to concentrate. If you are speaking to him/her and they look away, then they look at you to talk, this is a good sign that they look away to concentrate. (This is also a sign that they are more likely to have visual sensory issues.) In these patients, eye gaze is not as great a signal of stress unless it is markedly different. For instance, the patient looks at the nurse periodically at first, and after a couple of visits to the room, the patient does not look at the SAME nurse anymore. This can indicate general stress, or an issue that is specific to the nures, or something that happens when the nurse is helping the patient. (Do they give a shot? Are they taking a pulse? What is happening repeatedly?)

Another fairly common issue with spectrum individuals are sensory issues. (More below.) With regard to stress, senses frequently become heightened. When noticing behavior changes, make note of differences in reaction to things such as light, sound levels, smells, noises, patterns/distractions, touch or taste. If a patient who has been taking a liquid medicine asks about the "new flavor" that is terrible, that's a sign! As for sound levels, this is a sensitivity to the general volume of sound. Noise refers to specific sounds that may be mechanical, repetitious, sporatic, or in some way startling (to him or her.) Noise is somehing that stands out from the sound level, and it could even be a person's voice frequency or shoes on the floor. Noticing sounds that they didn't before, that are now very bothersome, is a good indication of stress. Unfortunately sound is a pretty pervasive stress inducer as well, so if sound/noise issues crop up, you have someone who has the potential to be very stressed, possibly because the noise continues. Make some quiet. Light is just that. A room that is not that bright begins to make a person shield their eyes or squint, and you are seeing stress going up. Alternatively, a contrast of light, such as a flashlight, or a lamp in a dark room can be very painful. If it didn't bother them before, but it is now, that could be stress. Smells tend to be very specific. Usually the smell issue is something that they can pinpoint and are good about avoiding. ("I can't tolerate the smell of cinnamon!" for instance.) An individual may not be able to smell the sink drain when they first get to their room, but if they begin to smell it when they didn't before, it could mean an increase of stress, especially if they "can smell sink drains". Smells evoke emotional responses (in everyone) so when a spectrum individual is distracted by smell, it's best to postpone any questions or tasks until it can be remidied or it goes away on its own. Touch is covered more below, but generally, if a touch begins to be uincomfortable when it was tolerable before, it is very likely a signal that the person is becoming stressed. Some have stimulations, or "stims" that calm them, so a patient beginning to rub their knee or flap hands, or something else physical and repetitive, it could be stimulating their senses to alleviate other senses. This person is likely to be stressed. Visual distractions are more pronounced with stress. That said, visual distractions can also cause unnecessary stress. Some patterns are enticing, others are difficult. If you are talking to a patient who is periodically looking in an area that has some kind of pattern, or has a lot "going on" (a messy desk, a patterned rug, a busy flower arrangement) ask if they are looking at it. If they are, ask if they like it, or if it's distracting to them. If it's distracting, they may be shy about asking to move it (or sit in a different seat) but making that offer could very quickly help the task at hand. Sensory issues can get worse when stressed, and a spectrum individual may have two or even three, so watch for them.


Sensory Issues

S/he is likely to have sensory issues that can cause literal pain. It is often difficult to comprehend how something like a taste or a smell can cause a person to cry with pain, but those with autism have sensory issues which can be very painful. It is not uncommon for a sound or a bright light to bother a "neurotypical", but this is not the same experience that an individual with autism experiences. The more stressed an autistic is, the more heightened the senses are, and the more painful "their" senses can be. Words like "assault" can describe the way senses are bombarded when anxiety is high.

How to help: Get the individual to a place where the senses are not as stimulated. Knowing "their" senses (the ones which are most easily heightened) makes this easier to do. Dim lights, reduce sounds, redusce visual patterns, reduce repeated touches (such as loose clothing or tags), and/or shield the nose from offending smells with clothing or other cloth. Very small children, or those who do not speak, may demonstrate overstimulation by demonstrating a sense of being agitated, or perhaps "hyper" or "scattered". reduce the stimulations. Another option, if appropriate, is to gently hug the individual, or squeeze their hands or arms with a slow and steady pressure. Doing this several time can often help an individual "slow down" their tactile sense.


Touch Issues

Your patient may have a variety of reactions to a variety of touches. (This is only one of the many reasons why autism is a spectrum!)  Depending on the person, it could be a matter of the touch being unexpected. Another touch issue is that most individuals with autism feel disrespected when they are touched with a lack of care. Some individuals with autism (although not all) are very protective of their bodies in unusual ways. For example, while touching a patient's abdomin may often be a sensitive issue, a person with autism might be fine with that, but become very upset if their nose is touched, or another, less "obvious" body part.

How to help: If your patient has autism, you may have a better response if you ask permission to touch them. Having a moment's notice, and the ability to say no, may be enough to make a world of difference. What this means is that taking an extra second to be gentle when picking up the arm (when not life threatening of course) will lower the stress level and preven problems down the line. If you notice the patient's behavior changing after touching in a new place, stop, possibly apologize and ask if it's ok if they mind if you touch them there.


Communication Problems

The way an Autism Spectrum Individual describes a physical feeling, such as is the case with medical issues, may not be the way you would describe the feeling. An "itch" to the individual may not feel the same to them, so using analogies may not always be accurate. That said, they can also be good ways to get the sp[ectrum individual to begin to articulate a feeling that they are having difficulty with. The key is to make sure that you are connecting with the level of understanding.

How to help: Check and re-check, if possible. Facial expressions are also not always reliable ways to detect pain or other feelings. In others, facial expressions may be the only way, and words may be impossible. The key here is to understand that the communication is likely to be disconnectled and faulty. If you can think of it as speaking two languages which are similar, such as Spanish and Italian, you may see how some things are the same and some things are different, and you won't always know which are which.


Emotion Regulation

Emotions are regulated differently in the Spectrum Individual. Unfortunately there is a wide misconception that those on the spectrum have limited emotions, or are not empathetic, which is most often false. Those on the spectrum, and specificually those with Aspergers, are highly emotional, and may simply demonstrate the emotions differently than one would expect. (For instance, laughing when intensely fearful or unusually silent when very excited.)

How to help:  If you want or need to know who the individual is feeling, just ask.  Asking: "Are you sad, or scared?" will get a better response than "what are you feeling?" The latter is too broad a question and is likely to be difficult for them to answer easily. It can be difficult to articulate emotions, but sometimes when it is finally put into words, it may be more profound that you expected.


Anger/Upset

Individuals on the spectrum may seem to be easily angered or upset, but if you ask one, they are likely to tell you that they are very patient! This difference is based on the internal thoughts before the anger or upset threshold is reached. Because emotions are not always easily identified by others, increasing stress is not usually noticed, unless it is articulated. Once the threshold is reached, anger or upset is the result. What the "other" party does not realize is that the upset has been building for some time.

How to help: At the first sign of stress, step in, do what you need to do to make it right. If the individual has reached that threshold, give either time and space, or loving attention. Which, will depend on circumstances such as gender, and the situation. Some examples are that males generally prefer time and space, while females generally prefer loving attention. If the individual seems to be agitated with little or no provocation, space may be a better solution regardless of gender. If there was a misunderstanding, expressing genuine kindness goes farther than almost anything else.


Process Confusion

Know that those on the spectrum may not always understand the process. Especially if the process requires a number of steps, or could be confusing or complicated, take caution with the "important stuff". If you have an adult with autism being picked up on an EMR call, consider that they are likely to be low-income. While it is not the responder's responsibility to see which hospital is "in network", if the individual is on a county hospital plan, you need to know that, because that they will need to go to the county hospital, for instance. Keep in mind that individuals on the spectrum may not know every detail. If they are alone at the time, be especially careful, as they don't have someone to give correct info if they are unclear.

How to help: Ask. If it's billing, ask if they would like help with the process. (Especially if there are a number of steps.) If it's an ambulance call, and there is a specific hospital that they will need to go to, you will want to know that before you take them to the "wrong" hospital. The caveat is that they may not understand that their coverage requires that they go to a certain hospital. Details are very easy for some on the spectrum, and very difficult for others. Another tip is to avoid talking very quickly, as it may be more difficult to process verbal information. Although, talking very slowly would be very insulting!


Uncertainty/Familiarity/Consistancy

Individuals on the spectrum take comfort in the familiar. Tht is not always possible... When that is the case, They take comfort in the "least unfamiliar". What this means, is that many changes will rattle the individual and make stress and anxiety go up. Many changes in a short period of time can be very upsetting, and make the mediacal/emergency professional's job harder.
 
How to help: If at all possible, maintain the same staff, room, or other elements, so that the experience is as comfortable as possible.


Eye Contact

Individuals on the spectrum may have greater difficulty maintaining eye contact. This difficulty increases as stress goes up. An individual who has been pulled over for a minor moving violation may have stress, which decreases their eye contact. As the officer begins to question what may be going on, the individual becomes more stressed, which makes eye contact worse. A lack of eye contact does not indicate deception with an individual on the autism spectrum.

How to help: If your patient is not maintaining eye contact, don't insist that they do. They are already self-conscious if they see that you are uncomfortable about it, and if you ask them to look at you, or even pressure them to do so, stress will escalate exponentially and it is likely to become worse. LTheir eye gaze doesn't mean that they are not paying attention, and it is not a sign that they do not respect your position. If they are distracted, it is irrelevant to the eye contact. They even may be looking away so they CAN listen to you. Some who have severe visual issues, or have social/visual issues, are distracted by either the frequent movement of the face, or trying to interpret facial expressions. If and when stress decreases, you are likely to see eye contact improve in a patient who is capable of maintaining some level of eye contact.

(The following links are soon to come!)

Please click the statement which best describes you.

I am a police authority or security officer and I am talking to an Autism Spectrum Individual.

I am a retail worker or manager and I have some kind of concern.

I am an employer, and I am considering hiring an Autism Spectrum Individual, or I have Autism Spectrum Individuals who work for me.

I work at an educational facility of some kind and I have an Autism Spectrum student.

I do not know anyone with autism, although someone handed me their BeFriendly ID card, so I am looking into the website.

I have a friend or family member with autism or Aspergers who is a problem for me.

I am a friend or family member of an Autism Spectrum Individual and I was handed this card for reasons I don't fully understand.

I have heard about Aspie Friendly, and/or the BeFriendly ID card, and I would like to hear more.