I was prompted to write this article after a question was posed to me by one of my students, “What are some of the typical behaviors we see in those who care for an autistic child or adult?” Nothing like a good question to get the observational juices flowing. This question is significant because what caregivers experience, sometimes alone, merits our understanding, but also our validation. Selfishly I wanted to explore this also because much of the literature deals with the autistic individual, but little I found is written about the experience of those that care for them.
In order to answer the question, I had to go beyond my own comfort zone of mere observation into one where I had to ask questions of those who understood this topic the most: the parents, siblings, and the care givers of autistic children and adults. What I learned made me realize that by examining this question, I was validating their experiences (some public, but mostly private) that for many are at best challenging. For this task, I was fortunate to be joined by one of my nonverbal communication students from Portugal, Pedro Lamy. As the older brother of two autistic sisters, Pedro was able to give me considerable insights and encouragement.
To gather the information, we both went out and talked with those we personally knew - who care for or are the parents or siblings of autistic children or adults. We asked them to just talk to us about their experiences while we observed their nonverbals in public and private with their autistic children present and at times not present.
When asked, “What was your reaction when you were notified by the doctor that your child or sibling was autistic?” the participant’s answers varied, but not to a great extent. The parents we spoke to expressed relief in finally knowing but they also remarked on the sudden heaviness of responsibility. A heaviness that was not just of the mind, but also of the body, as if suddenly overcome by gravity. They explained this was partly because of the realization that they faced a lifetime of challenges and that this condition was not simply going to go away.
Other participants said, that their immediate reaction was to cry. A weeping that was so profound, that years later they still remember how they cried – viscerally. And while they cried, they sunk lower and lower in their chairs, the weight of the situation registering on their bodies.
One father reported exhaling for such a long time (a cathartic exhale) that he still remembers the moment. He reenacted it by blowing up his cheeks and pursing his lips exhaling as he did so. He can still recall the sound of that air escaping for what seemed an eternity. When he stopped, he looked at his wife, and she was stiff as a board, grasping the arms of her chair as if flash frozen for what seemed like minutes: her eyes unblinking, staring into eternity, eerily silent upon receiving the diagnosis that their daughter was autistic. According to the father, it took her a long time to snap out of it, but when she did, she turned to him, still grasping the arms of the chair, and unleashed a torrent of things that had to be done to ensure the best for their child.
There were obviously a variety of reactions from participants we spoke to. And then one family told us what it had been like for the grandparents of the autistic child, which prompted me to explore further with other families. For the elderly grandparent, there was a ready acceptance of the diagnosis, a relic perhaps of a generational belief in the infallibility of the medical profession. They also experienced bewilderment as they pondered the disorder, because none of them remember anyone growing up in the 30s, 40s, or 50s, with this malady. Bewilderment was then followed by noticeable insecurity as they considered what they could do to make things better or help. Over time, the families reported a certain detachment and sadness that came over the grandparents even as they lovingly tried to understand.
This sadness is not just experienced by the grandparents. All the families and individuals we spoke with report a certain sadness they can “see” in family members. It was described as a sort of “knowing” sadness, no doubt driven by the realization that there is not much they can do for their sibling or child to extricate them from this malady.
It was also noted that while they observe a certain sadness in themselves, they are also sensitive to how well they handle things. When caregivers have a bad day, their failure to live up to their own expectations gets them down. They want to be patient, they want to understand, but at times they don’t succeed and that failure weighs on them.
As we spoke to the siblings and parents in the presence of the autistic child or adult we noted a certain amount of tension in the face and the neck muscles including furrowing of the forehead.
We observed many of the customary nonverbals of psychological discomfort and social anxiety including lip biting, lip compression, facial stroking, and leg rubbing. These were often repeated behaviors that of course serve to pacify and soothe. We also noted ventilating behaviors (pulling of clothing away from body at neck, shoulders, or chest or running of fingers through hair). In a few cases, nail biting was severely visible. And in a couple of cases, hyperhidrosis (hands become very sweaty) was observed, even leaving marks on the pants. All of these behaviors confirm the underlying psychological discomfort, stress, anxiety, or tension that is being experienced at different times by those with whom we spoke.
It is notable that in the two cases of hyperhidrosis previously mentioned, the siblings report that it started when they began to go out with their autistic sibling in public, even as they themselves were children. Years on, they still get sweaty palms, to the point of embarrassment, even in situations that have nothing to do with their autistic sibling. Severe sweating and wetness of the skin has seemingly become their default response to any social anxiety or stress.
We also noted that even when talking about their autistic child or sibling, without them being present, there was n increased amount of wringing of the hands or interlacing of the fingers (a reserved behavior to deal with a high degree of stress). It should be noted that not only did we see these behaviors; family members and caregivers also report seeing these behaviors in each other.
Parents and siblings report of tension, nervousness, and anxiety experienced while caring for an autistic child or adult. But in at least four cases we heard about transient intestinal discomfort that occurs regularly when they are responsible for the autistic child or adult. This is probably a psychosomatic response caused by stress or anxiety. Coupled with this is the feeling of a dry mouth (usually caused by nervousness), lip licking, and a lot of lip biting and lip compression.
Also noted, when they were anxious about their autistic sibling or child, was the interlocking of ankles around the legs of the chair. When the autistic child or adult acted out, there was frequent eye blocking (covering of the eyes with hands or the eyelids come down and stay down longer than usual) on the part of the caregiver, even when others were not present. Eye blocking is often used as a mechanism to symbolically block out negative thoughts, events, or emotions. Neck touching or covering of the supra-sternal notch (neck dimple) was also noted when the autistic child was acting out or when we discussed instances of the autistic child acting out.
Our inquiry in time led us to also hear about the experiences of the care givers and family and what that experience is like. We share these here because it was an eye opener for me and for my writing partner, it validated many things he had experienced with his own autistic sisters.
Having been notified of the diagnosis, parents, siblings, and caregivers report finding themselves fulfilling roles that are complex and for many, difficult. Difficult because at once they are thrust into numerous roles: risk managers, public relations, healthcare provider, and bodyguard. Their task is often demanding because as they readily admit, they are not prepared or qualified to fill these significant roles that they must now master quickly.
The individuals we spoke with report having a necessity to always be hyper-vigilant. They find that they cannot take their eyes off the autistic child or adult or they are so focused that they ignore others who may be talking to them. This often leads to the misperception that they are not interested in what others have to say or are not social, when in fact they are merely occupied with one of the four roles described above.
This need to be vigilant does impact on the caregiver’s interactions and on their ability to focus. They report being distracted to the point where social gatherings are interrupted, events are missed, and not surprisingly, their memory is affected. They report forgetting passwords or PIN numbers with greater frequency. Some reported even struggling with words at times because they are so distracted or focused.
It is interesting that no one reported the extra vigilance as a burden, but the task of being attentive, they reported, does evidence itself in their energy level, their faces, and in their bodies because they are admittedly more “fatigued.” They report of being tired and tense while caring for the autistic child or adult. This is particularly true in large gatherings where the crowds, distractions, and noise which is often too much stimulation for some autistic children and adults.
Virtually everyone we spoke to reported a constant self awareness and consciousness of others, observing how they react to the autistic individual. This no doubt is part of the hyper vigilance of which they so often speak. The caregiver tends to stand more erect, on alert for those who are coming into visual range but also assessing those that are close by who may react to the child as they act out. Having said that, those we spoke to also mention that when they are not on alert, they tend to sit as though collapsed or fatigued in their chairs from the strain of being hyper alert.
Out of necessity they become “risk managers” or specialists of social situations. They feel a need to determine ahead of time where they are going, who will be there, how long the event will be, what they must do while there, and whether there is anything to look out for that will be a problem (e.g., availability of bathrooms, food, noise levels, too many people). Because they are dealing with an individual who may be sensitive to sounds, crowds, colors, or distractions, they need to be highly cautious.
Also, because they have in their care an individual who is in some ways beyond their control, who may be constantly moving, or who may be dramatic in their gestures or outbursts, that alone makes for a very “taxing experience.” Consequently, they report that you have to be “on” at all times when you are caring for the autistic child or adult. The dramatic aspects of the behavior are often the most noticeable, but sudden quietness can also be troubling. In one instance, that quiet led to the parents finding their older autistic daughter quietly in the corner of a room exploring a container housing rat poison – fortunately, this time, the non-dramatic activity alerted them to something amiss. Out of necessity, eavesdropping becomes ritualized for the caregivers to make sure everything is OK.
Even when you are just a visitor in the home of an autistic child, you are drawn in to the need to care for their well-being — aware and cautious should something happen. Most people don’t realize that as a caregiver, the need to continually manage or attenuate the situation so that, for example, the TV volume is not too high, so that people don’t crowd, so that sharp objects are not handy, or so that circumstances don’t get out of hand. At the same time, they speak of the need to constantly assuage and pacify the autistic child with hugs, kisses, or a stroke of the head or hair, or even by humming a soft melodic sound. But there are naturally times of course when the caregiver is not immediately there to pacify or soothe and the autistic child may engage in repetitive behaviors that end up hurting them such as banging a hand on a sharp object.
Beyond assessing for risks and situations to avoid, those we spoke with report that they find themselves making phone calls ahead of people coming over or forewarning visitors or public spectators that their son, daughter, or sibling may act out. They feel compelled to forewarn, notify, or do a preemptive “just in case” as one of their duties. If the autistic child acts out (making odd noises, screaming, thrashing about), caregivers report feeling as though “electrocuted” (their term) by social anxiety – dreadfully shocked, stiff, with a need to both act immediately to deal with the autistic individual while at the same time needing to calm themselves down. At such times, they become even more aware of the desire to notify others so that they don’t become alarmed or as in one case, at a train station in Washington DC, so that authorities are not needlessly called. It is at times like these that passersby and spectators stop and stare or become alarmed that they must rise to do active public relations.
Of necessity, the family and caregivers find themselves doing a lot of social kowtowing. They refer to the need to be extra polite, humble, or overly supplicant because there are often times when they seek sympathy, understanding or forgiveness from others. They so count on others to understand that at times they feel they have to be obsequious in order to achieve their objective of being understood.
Whether they like it or not, the siblings of an autistic child often take on the role of a surrogate parent. It is a responsibility that frequently leaves the non-parent provider a little overwhelmed or stressed, as they note, because they feel inadequate (they themselves are young), lack professional training, or they have to make significant decisions or take actions that they feel only a parent should be doing. As one male sibling reported, the mere act of having to go into a woman’s bathroom with his older autistic sister can be anxiety producing on so many levels.
Seeking the Acceptable
From a social perspective, the family of autistic children often find themselves seeking out those that are empathetic and avoiding those that don’t understand or who are simply unpleasant, rude, or intolerant. In social settings they try to avoid those who may appear to have negative sentiments to protect the autistic child or adult, but it may also serve to spare themselves those looks that are disappointing or hurtful.
Some of those we interviewed revealed losing friends over time for a variety of reasons, including their friends’ inability to understand, to adapt, or because their friend wasn’t comfortable any more in coming over. For some, this becomes a defining moment as to who really is a friend. At least for many, those friends who continue to come over are those they can trust and count on.
Invariably, family members report of the frustration they often encounter when they are pleading with the autistic child or adult for attention or a change in behaviors and are ignored. For many, this disconnect between the way most people would respond and the lack of recognition or response by their autistic child or sibling can be very frustrating. It is something many caregivers struggle with, even years later. They also express frustration in not being able to interpret the autistic child or adult’s needs, desires, intentions, or true emotions because they display these so radically differently at times or not at all.
Almost all comment on how welcome it is when they get a break, even for a few hours, to stand down. In one instance, the autistic children go to a special camp for two weeks, that gives the family, what they describe as a “break.” And yet, there is a longing for their autistic relative. No sooner than the autistic child is gone than the family is talking about missing them and wanting them back. You can see the alacrity in their eager faces to have their child or sibling back. It is notable that though they show the visible signs of tiredness and fatigue, they don’t talk about their responsibilities as being a burden. In fact they talk of having a tremendous emotional payback for having the child in their life.
Hardening of the Care-Giver
We cannot say there was a consensus, but it certainly was hinted at by some or expressly stated by others that caring for an autistic child or adult, “makes you tough.” It makes you sensitive to the needs of the autistic child or adult, but it also hardens you to those who are ignorant, narrow minded, truculent, or just plain nasty. There is a duality that is often described by those who care for the autistic child of being simultaneously warm and sensitive, as well as tough and cold. The pendulum moves swiftly depending on the immediate needs of the moment and circumstances.
Dealing With Myths
The family and caregivers of autistic children also speak about the false impressions others have based on ignorance, popular culture, or the movies. The misconception that the autistic child is a “genius or savant,” or that they can do clever acts of memory, or have extraordinary if esoteric gifts. Strangers at times may even ask if they can do some particular trick as they have seen on the screen such as in the movie “Rain Man.” These inquires are of course irksome and offensive, but they also attest to the ignorance that is out there and they too cause a weariness that is at times exasperating.
In talking to families with autistic children, one of the things that they highlighted was the strain that they experience with their spouses and the higher than normal divorce rate. This is one area we didn’t plan to discuss but it was brought up by some of those we interviewed. We can contribute little here and find there are already plenty of articles out there dealing with this topic.
Any quest is educational and this certainly was for me. Working with my co-author, Pedro Lamy, certainly made this task easier, as well as instructive, as he lives this experience every day. It should not be a surprise that receiving a differential diagnosis of autism is stressful. That stress is highly visible in varying degrees on the face of those we interviewed who care for the autistic child or adult. The most prominent displays were: lip biting, lip compression, neck touching, hand wringing, ventilating, eye blocking, self soothing, and fingernail biting.
Unfortunately, popular culture and movies have not been helpful, misrepresenting what life for an autistic child or adult is like and what it is to care for someone who is autistic. The role of caregiver, as a parent or a sibling of an autistic child or adult, is much more demanding then most people understand. As those we interviewed indicated, they must take on the role of risk management, public relations, healthcare provider, and bodyguard all at once. Not an easy task, requiring patience, decorum, understanding, and acting skills – to deal with the autistic child while at the same time making strangers more comfortable.
Obviously we cannot really know what it is like if we are not caregivers or the family of an autistic child ourselves. In writing about this subject, I have so much more appreciation for what my co-author Pedro experiences daily. Love, it is said, is a wonderful coping mechanism – our interviews are a testament to that. While the task for caring for an autistic child or adult is at times difficult, no one stated that this was a burden; even though at times their faces attested to daily challenges that most of us will never endure. Love seems to overcome much adversity and that is a lesson for us all here.
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Pedro Lamy, has been student of nonverbal communications for four years and is a human resource manager for a large European company. He currently lives in Portugal. He can be reached at email@example.com
Joe Navarro, M.A. is the author of What Every Body is Saying, as well as Louder Than Words. For additional information and a free nonverbal communications bibliography please contact him through www.jnforensics.com or follow on twitter: @navarrotells or on Facebook. Other articles by Joe Navarro in Psychology Today.