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Nick Ogonosky

Unseen agony:
Dismantling autism's house of pain

Some people with autism can tolerate extreme heat, cold or pressure and seem relatively insensitive to pain. Paradoxically, they may experience intense pain from idiosyncratic sources but struggle to communicate it.

by  /  21 May 2015
illustration by:
Nick Ogonosky

As a child, Noah hated when his mother vacuumed the house. “She would put the vacuum on the wood floor, not the carpet,” he remembers. “And that’s really loud, so it would really freak me out.”

Noah, who asked that his last name be withheld, was diagnosed with a mild form of autism called Asperger syndrome as a college student (Asperger syndrome has since been subsumed into the larger category of autism spectrum disorder).

Now in his early 30s, he counsels other men with autism and teaches psychology in Boston. But as a child, he didn’t realize his sensory world was different from other people’s experiences.

“At first I would scream and yell for her to stop, but she had no concept that what she was doing was irritating,” Noah says. “And I had no idea that what I was feeling was not what everyone else felt.”

Noah eventually came to accept that the noise of the vacuum, like many other sensory experiences, was something he just had to suffer through. As a result, “I was very numbed off,” he says. “I could handle really intense cold or even pain and not do anything, not feel too much.”

Noah’s experience illustrates the paradox of pain in autism. On the one hand, some people with autism can tolerate extreme heat, cold or pressure and seem relatively insensitive to pain. On the other hand, they may experience intense pain from idiosyncratic sources but struggle to communicate it.

“It’s interesting to me that those two ideas can be held in mind at the same time by the field,” says Matthew Lerner, assistant professor of psychology, psychiatry and pediatrics at Stony Brook University in New York.

A closer look at the literature confirms that although some people with autism are insensitive to pain, others are unusually vulnerable to it. Sensory sensitivities — exaggerated reactions to certain sounds, lights or other stimuli — affect up to 70 percent of people with autism. Pain may emanate from autism-related health issues such as gastrointestinal problems. And difficulties with sleep, anxiety and perseveration, or the tendency to fixate on a particular thought — all common features in people with autism — may intensify pain.

Recognizing this pain is a serious challenge, however, because people with autism have unusual ways of expressing it. This, too, may feed into a perception that they don’t feel pain.

“That’s really intensely problematic when it comes to injections or medical interventions for people with autism,” says Clare Allely, lecturer in psychology at the University of Salford in Manchester, U.K.

One French study found, for example, that fewer than half of children with autism were given a local anesthetic before having blood drawn, even though this practice was routine for typical children1.

Skin on snow:

The idea of an altered experience of pain in autism dates to the first descriptions of the disorder. Leo Kanner mentioned abnormal sensory processing, such as a girl who had an odd, detached reaction when pricked with a pin, when he coined the term autism in 1943. Later case studies describe, for example, a girl with autism who played in the snow with no clothes on, and a boy who cinched his belt so snugly it dug into his skin, and once grabbed a hot frying pan without flinching2.

These anecdotal reports gave rise to a prevailing view, unquestioned for many years, that people with autism tend to be insensitive to pain. In fact, many clinicians interviewed for this article say they’ve known people with autism who seem similarly impervious to pain, which may help explain why the notion held sway for so long.

"I had no idea that what I was feeling was not what everyone else felt.”

But beyond this scattered evidence, there is a paucity of solid research on the topic.

“I was surprised by how little literature exists on autism and pain,” says David Moore, senior lecturer in psychology at Liverpool John Moores University in the U.K., who last year published a review of the field3.

Until scientists have a clearer grasp of how people with autism feel and show pain, Moore says, doctors may continue to overlook their signs of distress — and perhaps serious medical issues for which pain is an important sign, such as broken bones and infections.

“Just because there are cases where individuals don’t experience pain, to ignore the potential pain and suffering of other children with the same diagnosis is equally dangerous,” he says.

The few rigorous, well-controlled studies in this area hint that the idea that people with autism are insensitive to pain is largely a myth. For example, three experimental studies in which researchers subjected volunteers to a mild electrical shock, pressure, heat or cold suggest that people with autism have normal pain thresholds or may even be more sensitive to pain than others are4,5,6.

A couple of other studies have tracked children’s reactions to having blood drawn, recording their cries, grimaces and physiological responses such as heart rate7,8. Overall, these studies, too, suggest that children with autism experience similar levels of pain as typically developing children do.

If anything, people with autism may experience more pain than others because of other medical problems. For instance, they have trouble sleeping regularly, and a few studies have begun to explore how this might affect their response to pain.

In one online survey published last year, 62 mothers of children with autism reported a strikingly high prevalence of both sleep problems and pain-related behaviors in their children9. More than 90 percent of the children slept too much or too little or had nightmares or breathing irregularities while asleep. And more than 90 percent scored above the cutoff for behaviors that signal pain, such as moaning, grimacing or seeking cuddles.

Not surprisingly, children who exhibit more pain-related behaviors in a given week also have more sleep problems. Not sleeping well could also sap a child’s ability to deal with pain and lead to more behavioral issues in general.

Gastrointestinal problems may also distress children with autism. A parent survey last year found that 58 of 225 children had experienced abdominal pain for at least three months10. One year later, more than 85 percent of these children still had these problems. And nearly one-quarter of the children who hadn’t had abdominal pain at the beginning of the study developed it by the end.

A thousand needles:

Nick Ogonosky

Nick Ogonosky

The gut study also hints at ways the psychological fallout from autism may enhance pain.

Anxiety can contribute to gastrointestinal problems in the general population. Likewise, anxious children with autism are more likely to have stomach pain.

In the general population, too, anxiety amps up the pain a person feels from an injury, and anxiety is especially common in children with autism. This anxiety might make people with autism highly attuned to their aches and pains, though there is no direct evidence for this connection.

“Sometimes it’s hard to tell what is causing what if we’re seeing all those symptoms together,” says Micah Mazurek, assistant professor of health psychology at the University of Missouri-Columbia.

Other characteristics of autism might also make people on the spectrum more psychologically vulnerable to pain. Noelle Giesse, a mother in Queens, New York, says that when her 15-year-old son Matthew, who has autism and Crohn’s disease, suffers bouts of abdominal pain, the agony tends to overwhelm him. Perhaps because of an autism-related tendency to perseverate, he’s unable to distract himself from his discomfort by going about his daily activities the way his sister can.

Mazurek and her team discovered that in autism, sensory sensitivity is even more strongly associated with pain than anxiety is. Children reported by their parents to be hypersensitive to sound, smell, tactile and other stimuli tend to have more abdominal pain to begin with, and are more likely to develop new abdominal pain.

“They may be likely to find lots of different stimuli to be painful, including gastrointestinal stimulation,” says Mazurek. The normal bodily sensations of digestion and elimination might be so intense and unpleasant that they avoid going to the bathroom and develop constipation, setting off a vicious cycle.

This sort of hypersensitivity may make what others would consider only mild provocations intensely painful for people with autism. Noah says there are lots of sensations he can’t abide, from the harsh ringing of a telephone to the feeling of his ankle bones touching each other. Making eye contact with another person is similarly unbearable for him.

When he was working at a summer camp for children with autism, Noah says, he once heard one boy respond to another boy’s annoying, singsong repetition of “to-MAY-to, to-MAH-to” with: “Stop saying that. It feels like you’re pricking me with a thousand needles.”

Despite that sharp visual, Noah says this kind of description is only a metaphor: His sensory sensitivities don’t feel like the physical reality of a cut or bruise.

“My response will be very similar to someone who’s in pain, but it comes from a different place,” he says. “It’s just that it’s an all-encompassing, irritating process that envelops your whole brain.”

Silent scream:

Even as all these coalescing factors conspire to enhance pain in people with autism, that pain can be extraordinarily difficult to recognize.

In a 2009 study, researchers found that the hearts of children with autism pounded faster while they had their blood drawn than did those of typical children8. But the children with autism made fewer facial expressions, such as grimaces, that indicate pain, perhaps because they have a smaller repertoire of expressive behaviors in general.

“The challenge with autism is that we’re dealing with a population that has altered social behavior,” Moore says. “And pain behavior is a fundamentally social thing.”

Some people with autism may communicate pain in counterintuitive ways. Giesse recalls Matthew’s reaction right after getting his tonsils removed. He threw a tantrum, screaming that he wanted to go home — despite his throat presumably being in significant pain.

Later, Matthew told his mother he had screamed precisely because his throat hurt so much. “But he couldn’t express that to us; for him, it was just to scream,” Giesse says.

Unable to express themselves, some children may turn their frustration outward — or even against themselves.

Nick Ogonosky

Nick Ogonosky

“A lot of times, pain may be exhibited as an exacerbation of behavioral problems or increased self-injury or aggression,” especially in people with autism who have limited verbal abilities, says Mazurek.

Little research has been done on this topic, but the very behaviors interpreted as a high tolerance to pain — such as head-banging or hand-biting — might be signs that the individual is in agony.

There is some evidence that, at least in some genetic subtypes of autism, there may be a biological basis to pain tolerance. For example, individuals with Phelan-McDermid syndrome, a genetic abnormality often accompanied by autism, are often impervious to aches. Mouse models of this disorder share this feature.

The original 1966 description of Rett syndrome, an autism-linked disorder that affects mainly girls, also alludes to the girls’ ability to withstand great discomfort.

In 2010, the first study to systematically explore pain in Rett syndrome surveyed 646 families in Australia, France and elsewhere, and found that 65 percent of the parents reported that their daughters had a delayed or muted pain response10.

Some girls with Rett laughed instead of crying when they were injured, the parents said. “Often they fractured bones and nobody knew,” says study leader Helen Leonard, an epidemiologist at the University of Western Australia near Perth.

Fractures are a particular problem in girls with Rett syndrome, who tend to have decreased bone density. Families and doctors who care for girls with syndrome “really have to be on the alert for prevention of fractures,” says Leonard. Her team is developing guidelines for protecting and healing the fragile bones of girls with the disorder.

Rett syndrome is caused by a mutation in MeCP2, a gene that governs the expression of many thousands of others. In the past several years, animal studies have shown that MeCP2 helps to orchestrate the perception of pain in the body. Blocking the gene’s action in a rat can suspend the perception of pain after an injury, perhaps explaining the delayed pain responses of girls with the disorder.

MeCP2 has also been implicated in autism, so this mechanism might contribute to altered sensitivity to pain in some individuals with autism as well, Leonard says. But this idea is still speculative.

No longer numb:

For some people with autism, growing up may bring relief from many sources of pain.

But waiting for this relief isn’t a practical solution. Instead, parents and doctors need better ways of identifying and measuring pain in people with autism.

Rabbit relief: Matthew Giesse, who has both Crohn’s disease and autism, plays with one of his pet rabbits during a relatively pain-free moment. Courtesy of the Giesse family

Rabbit relief: Matthew Giesse, who has both Crohn’s disease and autism, plays with one of his pet rabbits during a relatively pain-free moment.
Courtesy of the Giesse family

To start, researchers say they need to systematically study pain in people with autism so that they can sketch out variations in pain sensitivity and expression across the autism spectrum.

Moore and Allely say they are interested in conducting psychological and imaging studies to help them trace pain through the nervous system in people with autism. They aim to determine, for example, whether nerve endings register painful stimuli differently or the brain interprets pain differently in individuals with autism than in controls.

Other researchers are attempting to disentangle the cause-and-effect relationships between pain, health problems and psychological traits. This work could eventually enable clinicians to ease the pain of people with autism by addressing its root causes, even if those causes aren’t purely physical.

Lerner is exploring how people with autism express pain, asking those with good verbal skills to help interpret the pain-related behaviors of others on the spectrum. The goal is to draw on these insights to learn how to decode the behaviors and facial expressions of people with autism. Speaking of his collaboration with those he is trying to help, Lerner quips, “Who better to ask about the difference than the experts?”

In the meantime, those on the spectrum are finding ways of preventing and soothing their own discomfort.

Noah, for example, has learned how to recognize and manage the quirks of his sensory world. He often wears headphones when he goes out in public so that he can control his auditory environment. And he feels much less numb, in general, than he remembers being as a child, a change he attributes to the increased self-understanding that came with his autism diagnosis in early adulthood.

“It took me a long time after I discovered that to be able to open up a little bit more to my senses, and feel things like a typical person would,” he says.


References:
  1. Rattaz C. et al. Pain 154, 2007-2013 (2013) PubMed
  2. Allely C.S. Scientific World Journal 2013, 916178 (2013) PubMed
  3. Moore D.J. Autism 19, 387-399 (2015) PubMed
  4. Bird G. et al. Brain 133, 1515-1525 (2010) PubMed
  5. Fan Y.T. et al. Soc. Cogn. Affect. Neurosci. 9, 1203-1213 (2014) PubMed
  6. Cascio C. et al. J. Autism Dev. Disord. 38, 127-137 (2008) PubMed
  7. Nader R. et al. Clin. J. Pain 20, 88-97 (2004) PubMed
  8. Tordjman S. et al. PLoS One 4, e5289 (2009) PubMed
  9. Tudor M.E. et al. Autism 19, 292-300 (2015) PubMed
  10. Downs J. et al. Am. J. Med. Genet. A 152A, 1197-1205 (2010) PubMed
  • Andi

    This is fascinating! Also, nice to hear that SOMEONE is asking communicative autistic people for input. That seems to be uncommon, but it makes sense.

  • isabellerapin

    Some of the descriptions of unexplained pain, feeling of needles, feeling of both insensitivity to and tolerance of cold etc resemble symptoms of small fiber sensory and autonomic neuropathy seen in some children and young adults (See Oaklander and Klein Pediatrics, 131 (4) e1091, 2013). Those described are not autistic persons, but of course people on the autism spectrum (ASD) can have similar problems. Some of these neuropathies, which are diagnosable with a small skin biopsy and other tests, occur in the context of autoimmune disorders and some respond to immune-modifying treatments. Worth looking at the paper in Pediatrics, a reliable journal, in appropriate cases. Treating small fiber neuropathy, if found, would *not treat the autism* but might make the children/young adults more comfortable.

    -Isabelle Rapin, Child Neurologist, Albert Einstein College of Medicine

    • Seth Bittker

      Isabelle,
      This is an interesting insight. It makes a lot of sense as autism often features elevations in auto-immune markers and inflammatory cytokines. I believe neuropathies are often feature these as well.
      To my knowledge most of the treatments for small fiber neuropathy are symptomatic and not particularly effective. Among treatments mentioned in the article you cite are IvIG and steroids. Steroids generally are not sustainable long term. IvIG is interesting and has been used with modest success in some cases of autism. Do you have any opinions / suggestions on how to treat those with small fiber neuropathy / autism?

      • Ethyl

        There is a young man on facebook whose mother is telling his story, and he was just diagnosed with small fiber neuropathy. He is undergoing intensive treatment at a hospital in Colorado. I think it is “Kreed’s Journey”. It’s pretty fascinating because it is like we are seeing it as it happens. He is in extreme pain. He can only use an ipad for limited communication. He is about 17 years old, and quite involved with autism.
        I am of the understanding that she decided to spend the year telling his story.

        I hope he lives through the year…he has lost many, many abilities that he once had, physically.

  • autism mom

    75% of my sons issues are sensory related. Like Noah, my son wears headphones when the noise gets too unbearable. I imagine that to him even a slight breeze can sound like being under a jet engine. There’s got to be a way to normalize the volume for these kids. Even though it’s processing problem maybe a hearing aid-like device that can filter background noise or lower volume would help. Without his headphone, my son will tilt his head and press his fingers near his ears because the noise really hurts him. Extreme sensory sensitivity, especially to noise, really negatively impacts his life so any research and insights into this problem is tremendously valuable.

    • autisticaplanet

      I have sensory issues I cannot just get through. My parents knew I had something wrong with me before my birth as I kicked, visibly, in the womb when my mother would play the organ. I have had sound issues my entire life and was dx’d with Asperger’s @ age 19. I use headphones to block everyday sounds when out. Your hearing-aid device sounds like a dream technology hopefully soon makes a waking reality. A filter to make my (and your son’s) brain interpret sound like a NT..what a Godsend that would be!

  • lisa

    It’s amazing how this fits my son. He often pics his skin to aid in sensory issues.

  • Sandra McClennen, Ph.D.

    One of my clients was non-speaking when I first saw him and wore a helmet during all waking hours because he constantly hit his head. After I was able to give him a system of communication he could use, he typed that his stomach hurt. His mother found a physician who took this seriously. Following tests, he began a gluten-free diet. This in combination with cognitive behavior therapy ended his head-hitting and helmet-wearing years ago. It has not returned (and he has made many additional amazing improvements in behavior as well). In my experience, most self-injurious behavior is communicating pain – intestinal system, headaches, toothache, etc. When the pain is addressed, the self-injury can stop, either spontaneously or with cognitive therapy.

  • Dialith Urista-Goss

    I am excited that someone is asking autistic people for their input. Those who are more verbal can offer a lot of insight. I also think parents of those on the spectrum also have a lot of information to offer just from our observations. My son has an Aspergers diagnosis and has a lot of sensory issues, most of which we just learned to work around or accommodate. He is very sensitive to pain and one of the issues that we have yet to be able to work around are doctor visits, especially those that require any type of shots or blood drawn. Thank goodness those don’t happen very often! I would love any suggestions as he is 14 but still needs a couple of immunizations that are optional but we would prefer he have.

  • Michele Williams, MS Ed

    I remember reading something once about the intestinal upset for several children with autism being discovered as having a link to measles somehow never having been fully conquered. Treatment for the measles presence ended toxicity in the brain as well as the intestinal symptoms. I don’t remember the percentages mentioned in that study, but it was significant enough to warrant some testing on children with autism and digestive/intestinal symptoms.

  • Cara Creager

    While a lot of the language in this piece is unbelievably problematic and pathologizing – for example, the autistic community overwhelmingly prefers the identity-first “autistic” as opposed to “people with autism” (it’s not a disease, nor is it something removable) – the basic tenets are sound. However, I find myself somewhat frustrated by the singular focus on children. It’s always children.

    Let me be frank: the information contained herein could have been easily accessible to the greater scientific community ages ago if you -asked autistic adults.- I am one of them, and I experience much of what is talked about here. I know many other autistic adults who do. But the lack of research into the lives of autistic adults is so startling that I would almost call it negligent. We are a population that suffers routinely, that experiences sensory input completely differently than most. But because we are not cute, malleable children, no one seems interested in our input – when autistic adults have lived what your children are living now.

    • Ethyl

      I would love to see more input from adults. You’ve started it here…come back.

      When my son was young, I knew of just a handful of people who gave input online into what it was like to be an autistic adult.I went to the library, and there were 2 book authors…Temple Grandin and Donna Williams. That was it.

      I give entirely too much input. I’m sure people get tired of me. I just feel compelled. I don’t care if anyone is interested or not, unfortunately, Somebody’s got to do it, and this is the best place I’ve found. There is seldom, if ever, any interaction from the experts, though–and even from other posters. I’ve got a sneakyg suspicion some experts read it, though.

      I try not to make it solely criticism. Sometimes that is hard.

      • Laney Chandler

        People who are #actuallyautistic are the experts. These so-called experts don’t listen to autistics – and that is why they are wrong more than they are right. If you are participating, listening and asking, you are doing it right. I will take 1000 people who are contributing, asking and listening than who style themselves as “experts” while perpetuating abusive theories like “autistics lack empathy” to promote their career.

    • Laney Chandler

      This was my response to it as well, not to mention that the article ignores the greater issue, which is the psychological suffering that is created by being autistic in a world that scrutinizes, rejects, corrects and shuns you. Autistic adults also self-injure. The agony that drives that is often sensory and emotional. What I see are allistics scanning the discourse by autistics and then using their amplified voice to talk about us. Without us.

  • Cyndi

    I’m 34 and I have PDD-NOS, and pain really is a weird thing!

    I describe it like this: the pain is a huge rave party that’s very loud. Sensory input and responses to them are like two people trying to talk to each other through the noise and music. The signals are going to get partly lost because the person yelling can’t be heard by the person who is listening. It takes a few repetitions for the full message to get through.

    I’m lucky to be verbal most of the time, however trying to talk when I’m in pain requires a lot of energy. Sometimes I may not have any to spare. When something hurts, I have to focus on it. Pretend the pain is a single tree that’s on fire. Only the one tree will burn if I watch that flame, but the whole forest will go up if I take my attention off it.

    I have a low pain threshold, but a high pain tolerance. So if I go up to someone and say something hurts, I. AM. IN. PAIN. And either it’s been hurting for awhile or it started to hurt really bad fairly rapidly. Pain tends to make me be very still and quiet due to the focus of bearing it. I generally call a pain severe(6 or higher on the pain scale) when it interferes with my ability to think and understand what’s going on around me. If I can’t focus on activities I normally enjoy because I have to stay focused on the pain, it’s bad and I’ll speak up.

    I think every autistic person has a “baseline” stimuli threshold they hang around. Being sick, injured or menstruating creates more internal stimuli, which adds to stimuli already coming in from external sources. The careful balance is disrupted. Something a non-autistic person considers a minor annoyance may be unbearable to an autistic person. Think of of a waiter who is carrying a pile of dishes carefully balanced on his platter. Someone slips an empty glass onto the pile as he passes their table and he drops the tray because the added weight upset the careful balance.

  • Dusty Negron

    My daughter was always sensitive to bright lights loud noise she could not bear to hear her baby brother cry it drove her mad she is now 22 and wasn’t diagnosed until 20 now I can sympathize with the way she was feeling just didn’t realize the severity of what she was feeling she has a 3year old son of which she is totally detached from she loves him but doesn’t comprehend how to care for him I have custody she lives with me he was tested at 18 months but has some of the same traits as she did as a child should I have him retested

  • Evergreen

    I agree with Cara that there needs to be more attention and involvement in the lives of autistic adults. Finding someone who would even test/treat me as an adult was extremely difficult and requires me to drive close to an hour each way. I’ve always described myself as having a “hyper-sensitive nervous system”. All my senses are sensitive (most food tastes horrible, can’t stand loud noise, tear tags out of shirts, can’t stand smells, etc.). I’ve had IBS-like issues since early childhood. I’ve recently been diagnosed with fibromyalgia and I’ve also learned that my skin is allergic to a number of substances. I’m extremely sensitive to both hot and cold. I’m in pain all the time, but b/c I’m always in pain, I have a high “pain tolerance” (things that would cause other people to collapse don’t do so for me). I’d love to know how many other autism-spectrum people (kids and adults) also have these differences. There’s so much focus on kids, what do they think happens when the kids grow up? Some of us learn coping mechanisms, but that doesn’t mean the problems went away.

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