Originally published in Comfort Zone Newsletter: August 2009
Many concerned parents have asked me if their seemingly highly sensitive child could really be autistic or have Asperger syndrome. Sometimes a teacher or doctor has suggested it. Others have been told that the entire trait of sensitivity is just a mild form of one of these disorders, the higher functioning end of the “autistic spectrum.”
This article is not meant to supply you with the full details of autism or Asperger syndrome. To find those you can go to some very good websites (for example, autism-society.org or the National Institute of Mental Health website, nimh.nih.gov), where you will find all sorts of information, including the technical definitions of these disorders. These definitions come from the Diagnostic and Statistical Manual provided by the American Psychiatry Association. DSM, as it is called, is far from perfect, but does help when trying to sort out a question of this kind.
The autistic spectrum disorders (ASDs) are part of the “Pervasive Developmental Disorders.” In all of these disorders, even if a person is said to be “high functioning,” there is always severe, sustained, pervasive impairment in social functioning, plus highly restricted interests or repetitive activities. And sensitivity to sensory stimulation or sensitive sensory processing is never mentioned in the diagnostic criteria for ASDs. So to put it simply, according to the DSM, the normal temperament trait of high sensitivity, found in 15 to 20% of humans (and apparently all higher animals) would have nothing to do with being a high functioning person on an autistic spectrum.
Autism versus Asperger’s Syndrome
Autism is on the low end of this so-called spectrum. It is considered more serious, in that others may barely be able to communicate with a child having this disorder. Those with Asperger syndrome do speak normally, so HSCs are more often confused with them than with the “classic” autistic child. But those with Asperger’s still show a lack of understanding of what is going on emotionally in the other person even if they can hold a conversation. Adults with Asperger syndrome do fine in many types of jobs–indeed are unusually good at some–and will seem normal in impersonal social interactions, but again, they do not respond appropriately to emotional cues.
When I happened to be on a week-long group backpacking trip with a man with Asperger’s (he only told us about this at the end), it took some time to realize there was something different about him. I recall best that his normal ten-year-old son (they’d been sent out for a male bonding experience) was in agony from trying to carry a pack too heavy for him. His father told him it was because he had packed too much. This was surely the case, but Dad showed no sympathy or even annoyance. It was not about teaching his son a lesson–that would have involved some complex social-emotional negotiations. He was clueless about how to resolve this beyond next time seeing his son had a lighter pack.
Something clearly had to be done, so my husband carried the boy’s pack on steep climbs. The father expressed no surprise or gratitude. He was a very nice man, a nurse by profession, and a good one when I was injured on the trip. He could talk readily about his problem, and the fact his marriage had ended because his wife could not stand his lack of emotional empathy. But there was no way that he could be confused with an HSP, except perhaps by his acute awareness that he was different, which made him very sad. He could experience his own emotions, but he could not read the signs of the emotional experiences of others.
Don’t Assume “This Kid’s Just Highly Sensitive”
But let’s get back to children. An astounding 3.4 children out of a 1000 have an ASD. Even taking into account that there is more knowledge about ASDs and so more diagnoses of them, the increase goes beyond that. We do know these disorders are genetically based–researchers have found a number of different genes that can produce ASDs. For example, most but not all of the genes put boys more at risk than girls. Besides genes that are inherited, ASDs can also be caused by a gene mutation. (There is a suspicion that the increase in ASDs could be caused by one or more of the zillion chemicals we are all ingesting these days.) The variety of genetic pathways accounts for the wide range of behaviors seen with these disorders (strange fixations, astounding memories for details, etc.), but in all cases the brain is thrown off of its normal development because the growing child’s brain is misusing the sensory information it is receiving and that it needs for normal development. Specifically, the child is unable to notice social cues because the brain’s attention system is being focused elsewhere, entirely on to non-social stimulation.
An early diagnosis followed by the right treatment makes a huge difference in the outcome, so you do not want to make any mistakes here. With children, the social problems plus speech and attention-fixation abnormalities become obvious early on unless parents are in denial. What we do not want is parents telling themselves their child is “just highly sensitive” when he or she in fact has an ASD. I have two grand-nephews with an ASD, one a grandchild of my sister and one of my brother. When I first saw them as toddlers, in each case they were visiting as part of a longer trip, and I assumed they were HSCs who were overstimulated by travel. Clearly I am no expert myself at making the diagnosis, although I like to think that now I could do better, having seen them in action. But no one who loves a child or their parents would want to think about autism, even when the child in question will eat only exactly three kinds of food or is happy for twenty minutes merely watching a bicycle wheel spinning.
Do Not Assume a Disorder Either
Nor do we want the reverse, of course–sensitive children being mislabeled because they are observed to be socially withdrawn at school or in a strange social situation. Sensitive children are generally at ease at home, but if the home environment is stressful as well, a sensitive child could indeed have a “severe, sustained, pervasive impairment in social functioning,” but still not have an ASD. (PTSD might be a more appropriate diagnosis, or a “reactive attachment disorder,” another diagnosis found in DSM.)
A parent with even a suspicion that something is odd should get a professional evaluation involving several specialists (pediatrician, speech therapist, psychologist, etc.) who make observations at home and at school as well as in their office. But be sure at least one has experience separating a normal but extreme temperament from a disorder, which means he or she should be an expert in children generally, not just those with ASDs. And do mention whether the problem is worse when your child is tired or has been in an overstimulating environment, or if there is stress at home, or some major changes going on that might cause anxiety in an HSC, even if not in another child. Especially confess if you are having marital problems or fit some DSM diagnosis yourself, including substance abuse. HSCs are very affected by such things, so that, again, they could meet the criteria of severe, sustained, pervasive impairment in social functioning without having an ASD.
In some cases you know if it’s sensitivity or an ASD because the signs were present from birth. In other cases, the onset of an ASD occurs suddenly, around 1 or 2. Sudden or not, ASDs usually become obvious to others when the child is around 18 months to 2 years. It is essential that treatment begin early if there is a real problem.
So start asking questions as soon as you begin to suspect that something could be wrong–if speech is delayed, for example, or your child is behaving very oddly. Don’t be in denial or think this is just high sensitivity. Find out.
Why Has Sensitivity Been So Confused with ASDs?
Sometimes–not always–children with an ASD show acute sensitivity to noise, touch, or other sense modalities. Others are impervious to what most people would find uncomfortable, even to serious pain. Sometimes sensitivity and ASDs are confused because the child with an ASD may have little or no ability to regulate emotions, and sensitive children, too, are more emotional than other children. But with ASDs, these behaviors are due to incorrectly processing perceptual stimulation all the time, not just when overstimulated.
For a good sense of ASD from the inside you might enjoy The Curious Incident of the Dog in the Night-Time, a novel by Mark Haddon, who works with autistic children. He writes the story from the viewpoint of an autistic boy. Among other things, this child is intensely, miserably sensitive–but in a far different way than HSPs describe themselves. Remember, HSPs process information more thoroughly and thus gain more meaning from their observations. Our states of overstimulation arise from too much to process at once. Those with an ASD are always processing the wrong things and always experiencing chaos unless they are able to shut themselves off from the world entirely.
In brief, you can best sort out sensitivity from ASDs by keeping in mind two differences. First, social perception–HSPs are generally more skilled at observing what’s going on in a social situation, even when they are not joining in. Second, HSPs have intense imaginations and varied interests rather than narrow preoccupations.
The Unsocial Man–Sensitivity or Asperger Syndrome
Sometimes the bigger problem of distinguishing sensitivity from an ASD is seen with adult men. Even professionals often have trouble sorting out sensitivity from those with Asperger’s because both can lead to social withdrawal or poor social skills. Again, as yet there is no way to make a certain diagnosis looking at brains or genes, so one has to look beneath these behaviors–being socially withdrawn and unskilled–to the underlying reason. Men with either issue may have, as boys, holed up in their rooms to work with computers, read, or watch TV. As teenagers they may not have dated due to fearing rejection for being a nerd or seeming less manly than the boys getting the most attention. Then they may have chosen careers such as engineering or accounting in which they could avoid the discomforts of socializing. But again, those with Asperger’s lack social skills because they cannot perceive what is going on and never could very well. HSMs might do all of the above for several reasons. One is not fitting the masculine stereotypes in our culture. Another is having been more affected than others would have been by social traumas such as rejection or betrayal. Yet another reason is that they want to avoid over arousing emotional encounters with strangers or in groups merely because they have learned that in these situations they become too overstimulated to function well. So they focus instead on what they do best (for which they are often paid well, too).
Whatever the reason for social withdrawal, their families often want some explanation for all of this that they can understand in simple, scientific language. Why did he always retreat to his room as a boy? Why is he still not married? Everyone may be relieved to find a biological explanation, an ASD, especially since it absolves the parents of any blame. Alas, such a diagnosis also reduces the hope of changing, of developing stronger social connections with practice.
There are ways, again, to sort this out. Suspect an ASD if the problem was noticeable even in infancy, and as much at home as at school. Are the social problems now due to a real problem with recognizing social-emotional cues, such as a bland response when others would have empathy? On the other hand, suspect sensitivity if only other people are concerned, or if there is a reasonable explanation behind the behavior–the desire to reduce stimulation, a history of social traumas, or a wish to avoid working or living in environments that require boisterous or highly competitive behavior, which is most of our culture. Remember it also could be neither an ASD nor sensitivity if the man withdraws due to serious wounds from previous social rejections. In all of these cases except an ASD, the man might have rusty social skills, leading to more social anxiety, and then even less confidence in social situations and more and more withdrawal, all while fully aware of social cues. If anything, these men see too much. Research has found that shy people usually know very well what is happening and how to behave in a social situation–watching a video they can identify or suggest good social behavior–but they perform poorly in the actual situations due to low self-confidence.
On the other hand, some adults decide they are highly sensitive when they actually do have an ASD. They want to find a normal explanation for something that is not normal. Again, there is no blood test or other way of diagnosing ASDs, so if you are unsure, read all that you can about them and then try to decide for yourself (you being the person who probably knows you best). Pay particular attention to how others remember you in childhood. If still unsure, get a professional evaluation from someone who will consider all of the possibilities. If one person says you have Asperger’s, get a second and a third opinion. You want the truth. Don’t be afraid–there’s help for adults with ASDs. But none of us can begin to change until we know from where we are starting.