Empowering autistic teens: New advice for navigating chronic pain

Empowering autistic teens: New clinician advice for navigating chronic pain

When you’re an autistic teenager living with chronic pain, getting treatment for your pain can be a challenging experience. According to a group of young people who’ve spoken to Dr Abbie Jordan of the Department of Psychology and Centre for Pain Research at The University of Bath about their experiences. Teenagers mention sensory issues, a lack of autism awareness among staff, or feeling “doubly different” compared to their peers, making receiving “one-size-fits-all” psychologically focused treatment for their chronic pain particularly challenging.

Improving treatment for autistic adolescents matters because there are widespread reports that autistic people have shorter life expectancies and poorer health than their non-autistic peers and report receiving lower-quality healthcare.

Now, her team have come up with a new set of clinical guidelines they hope will make things easier for pain clinicians working with autistic adolescents.

The recommendations published in The Journal of Pediatric Psychology are:

  1. Provide written/visual information to take home: Consider providing written and/or visual information for the adolescent to take home. Ask about the type of format the autistic individual will find most useful to enable them to follow the information provided. Use pictures and colours if these work for the individual.
  2. Ensure that information is individualised: Avoid using a standard form for all adolescents. Include key points and make sure they are pertinent to the adolescent. Adopt language used by the adolescent too answer the questions. Use individualised information to validate the autistic adolescent’s experiences and explain how pain and autism may present together.
  3. Take your time: If an adolescent has autism diagnosis in their clinical notes, plan to go more slowly, take more time with the clinical work and pause.
  4. Include parents and caregivers: Ask and include parents and caregivers, they know their adolescent best. Shape what the parent/caregiver says outside of the clinic, they can reinforce the clinical work outside of clinical settings.

These recommendations are based on the findings from a study conducted by Dr. Jordan and pain research and clinical colleagues in which they interviewed 10 autistic teenagers and their mothers who had engaged with a pain treatment in a pain clinic.  The authors asked the adolescents and their mothers about the adolescents’ experiences of living with chronic pain and being autistic.  

A mother of a 15 year boy with hypermobility spectrum disorder described how for her son,

“It’s so tiring and exhausting being in pain, and then it’s even more so by having autism and then by having it suddenly pointed out that you are so completely different. I think it can be quite isolating.”

Regarding psychological treatment for her chronic pain, such as cognitive-behavioural therapy (CBT) or acceptance and commitment therapy (ACT), 18-year-old “Chloe” said:

“Some of the mindfulness ones [activities] are like “imagine you’re up a mountain” and things like that, and I’m just like, I know I’m not up a mountain… I was just thinking, I can’t imagine being anywhere other than where I am.”

Chloe’s mother went on to explain:

“The clinicians say, ‘imagine that your toes are dipping into the water and how cold it is,’ and I can imagine an experience, but Chloe is like ‘oh no they’re not so they’re not.’ So, most of the techniques around anxiety…they’re blocked by the ASD [Autism Spectrum Disorder], so Chloe doesn’t get the benefit of a drop in anxiety. And therefore, the drop in pain doesn’t come because the anxiety threshold is still there.”

The teenagers also spoke about how they communicate their chronic pain differently compared with their neurotypical peers. For 15-year-old “Jack,” that’s by laughing, but it took a few years for this to be picked up by medical staff. His mother explains:

“We had a little bit of a problem with physios or doctors not understanding that when he’s laughing, he’s in pain, so we were almost sort of brushed off, so I think maybe not being taken seriously or understanding quite the level of pain he was in.”

It’s hoped that Dr. Jordan and teams’ new guidelines will help clinicians better understand the experiences of autistic adolescents living with chronic pain and, in turn, improve their ability to manage their pain and its impact on their life.

Dr Jordan explained “We hope that these simple guidelines will be widely adopted by pain clinicians working with autistic adolescents and that they will enable autistic adolescents living with chronic pain to receive more targeted treatment that better meets the specific needs of autistic adolescents. A one size fits all approach does not work for pain treatment and that is even more so the case when working with autistic adolescents who live with chronic pain. We hope that these guidelines will encourage the development of more individualised pain treatments”.

Additional study shows promise for low-intensity ultrasound as a non-invasive approach to alleviate pain.

Low intensity focused ultrasound

Wynn Legon (left), the faculty director of the transcranial MR-guided focused ultrasound facilities at the Fralin Biomedical Research Institute, and Andrew Strohman, an M.D.-Ph.D. student at Virginia Tech, were among researchers reporting that application of low-intensity focused ultrasound to an area deep within the brain may potentially help people cope with chronic pain. The research was published in the Journal of Neuroscience. Photo by Clayton Metz for Virginia Tech.

Virginia Tech researchers at the Fralin Biomedical Research Institute at VTC report that applying low-intensity focused ultrasound to an area deep within the brain may point to new ways to help people cope with chronic pain.

In a study showing published in the Journal of Neuroscience, scientists demonstrated the effectiveness of using low-intensity focused ultrasound to modulate the activity in a critical region in the brain that processes and regulates pain signals. 

Researchers, including first author Andrew Strohman, a Virginia Tech M.D.+Ph.D student at the Fralin Biomedical Research Institute, found the application of low-intensity ultrasound to a structure known as the dorsal anterior cingulate cortex reduced pain, diminished bodily responses to pain, and decreased pain-related brain activity without the need for invasive procedures, researchers said.

“This study points to a non-invasive and effective way to modulate a critical region of the brain involved in pain processing, while eliminating many of the risks associated with surgeries,” said Wynn Legon, assistant professor at the Fralin Biomedical Research Institute and senior author of the study. “It provides a potential new means to modulate the brain activity in response to pain that may serve to better understand the mechanisms of chronic pain to provide a new, innovative therapeutic option that could change how we approach and treat pain in the future.”

In a study with 16 healthy volunteers, researchers focused ultrasound energy on the dorsal anterior cingulate cortex to see if it could change how people feel pain. To test whether it changed someone’s perception of pain, they applied brief heat to the skin and measured pain perception, heart rate variability, skin responses, and brain electrical signals.

Data were collected in three sessions on three separate days along with an imaging visit consisting of an anatomical computerized tomography (CT) and structural magnetic resonance imaging (MRI) to accurately and reliably target this hard-to-reach area in each individual.

The results showed that the ultrasound made people feel less pain, and it also altered how the brain and heart communicate. Overall, the heart did not respond as strongly to pain, and certain brain signals changed. 

“Chronic pain patients often experience cardiovascular issues, which may either be at the root of their chronic pain or play a role in contributing to it,” said Legon, who is also an assistant professor of the School of Neuroscience of the College of Science and in the VTC School of Medicine Department of Neurosurgery. “Understanding this intricate relationship is crucial, because it enhances our comprehension of pain mechanisms and suggests the importance of addressing both pain perception and cardiovascular health.”

The results suggest that using ultrasound applied to this specific region of the brain may help reduce pain and change how the body reacts to pain. 

More recently, in a study published in the journal PAIN on Feb. 5, the researchers found soundwaves from low-intensity focused ultrasound aimed at a brain region called the insula can also reduce the perception of pain and other effects.

“This study provides some of the first evidence we can change three major areas of activity, those being pain perception, brain activity, and cardiac activity,” Strohman said. “The next steps are to look at how these metrics relate to each other and explore how these findings can be applied to improve the lives of patients suffering from chronic pain.”

“While there has been tremendous progress in recent years in the use of high intensity focused ultrasound for creating small lesions in patients’ brain to treat disorders such as essential tremor and for tumor ablation, we are at the very beginning of exploration of the use of low intensity focused ultrasound to mildly modulate brain activity and affect perception and behavior,” said Michael Friedlander, executive director of the Fralin Biomedical Research Institute, who was not involved with the study. 

“The new work by Strohman and Legon and their pioneering team represents some of the most exciting new advances of this approach,” added Friedlander, who is also Virginia Tech’s vice president for health sciences and technology.  

“The fact that it is addressing one of the most debilitating diseases, chronic pain, represents a major step in this important emerging field of biomedical research and provides hope for better treatments that may avoid the untoward effects of many drugs used for treating pain,” Friedlander said. 

Research Assistant Brighton Payne, medical student Alexander In, and M.D.+Ph.D. student Katelyn Stebbins of the Legon lab at the Fralin Biomedical Research Institute contributed to the study.

More on the relationship between pain and weather

Study shows desire for new forecasts, potentially altered behavior when risk is high
Study shows desire for new forecasts, potentially altered behavior when risk is high

For individuals who experience chronic pain, weather can be a significant factor in their day-to-day plans. In a recent study from the University of Georgia, about 70% of respondents said they would alter their behavior based on weather-based pain forecasts.

“We’re finding more consistent relationships between weather patterns and pain, so it seems more possible to make weather-based pain forecasts,” said lead author and geography/atmospheric sciences lecturer Christopher Elcik. “This study was to survey and see what the audience was for this type of forecast.”

The study surveyed more than 4,600 individuals, and among migraine sufferers, 89% identified weather as something that impacts their pain level, and 79% saw weather as a trigger for pain. Among individuals with other conditions, 64% said weather patterns could trigger pain and 94% identified weather as a factor that impacts pain.

Elcik built on previous research regarding specific weather patterns and pain-related conditions to gauge public interest in a weather-based pain forecast, which could indicate high or moderate risk for migraines or chronic pain.

“I see how much people can be affected by these types of pain, so if I can provide someone with insight into the level of risk for a day, maybe people can take steps to prevent the pain from happening,” Elcik said. “There are preventative measures people can take if risks are higher.”

If the hypothetical risk was high, more than half of respondents said they were likely to take preventive measures, such as medication, resting or avoiding compounding triggers, and about 47% of respondents with migraines and 46% with pain-related conditions were “extremely likely” to take such measures.

Desire for a forecasting tool was quite high, Elcik said, with 72% of those living with migraine and 66% with pain-related conditions saying they would alter their behavior by canceling plans or taking preventive measures in response to a weather-based pain forecast. Some respondents reported already using web-based tools, such as AccuWeather’s arthritis or migraine forecast, which predicts low-to-high risk according to atmospheric conditions. With existing tools, however, there is little available information about the variables considered or how the predictions are made.

Likelihood to continue with plans also depended on the length of the activity. If plans were about 30 minutes long, 57% of respondents with migraines and 52% with pain-related conditions said they were “extremely likely” to continue plans despite a moderate risk of pain, and about 43% from each group would continue with a highest risk forecast.

With an activity lasting more than three hours, however, that number dropped to around 23% for moderate risk and 18% for high risk with migraines and 21% or 23%, respectively, for other pain-related conditions. As level for risk increased, so did the likelihood to alter plans.

“This was across the board,” Elcik said. “Everyone was more likely to cancel plans if the forecast risk was higher.”

While additional research and studies are needed to create a reliable pain-based weather forecast, Elcik said this study highlights the importance of developing such a resource.

“This publication shows there’s an audience that’s willing and eager to try something new, and there are probably many more people who would benefit—more than we even thought,” he said. “I think these results can push other researchers to also look at similar, larger-scale weather phenomena and help the community better understand how the atmosphere does impact pain.”

Soft optical fibres block pain while moving and stretching with the body.

No Pain Fibers

A soft hydrogel fibre enables optogenetic pain inhibition during locomotion.  CREDIT Credit: Sabrina Urbina Villafranca

Scientists have a new tool to precisely illuminate the roots of nerve pain. 

Engineers at MIT have developed soft and implantable fibres that can deliver light to major nerves throughout the body. When these nerves are genetically manipulated to respond to light, the fibres can send pulses of light to the nerves to inhibit pain. The optical fibres are flexible and stretch with the body. 

The new fibres are meant as an experimental tool that can be used by scientists to explore the causes and potential treatments for peripheral nerve disorders in animal models. Peripheral nerve pain can occur when nerves outside the brain and spinal cord are damaged, resulting in tingling, numbness, and pain in affected limbs. Peripheral neuropathy is estimated to affect more than 20 million people in the United States. 

“Current devices used to study nerve disorders are made of stiff materials that constrain movement so that we can’t really study spinal cord injury and recovery if pain is involved,” says Siyuan Rao, assistant professor of biomedical engineering at the University of Massachusetts at Amherst, who carried out part of the work as a postdoc at MIT. “Our fibres can adapt to natural motion and do their work while not limiting the subject’s motion. That can give us more precise information.”

“Now, people have a tool to study the diseases related to the peripheral nervous system, in very dynamic, natural, and unconstrained conditions,” adds Xinyue Liu PhD ’22, an assistant professor at Michigan State University (MSU). 

Details of their team’s new fibres will be reported in a study appearing in Nature Methods. Rao’s and Liu’s MIT co-authors include Atharva Sahasrabudhe, a graduate student in chemistry; Xuanhe Zhao, professor of mechanical engineering and civil and environmental engineering; and Polina Anikeeva, professor of materials science and engineering, along with others at MSU, UMass-Amherst, Harvard Medical School, and the National Institutes of Health.

Beyond the brain

The new study grew out of the team’s desire to expand the use of optogenetics beyond the brain. Optogenetics is a technique by which nerves are genetically engineered to respond to light. Exposure to that light can either activate or inhibit the nerve, which can give scientists information about how the nerve works and interacts with its surroundings. 

Neuroscientists have applied optogenetics in animals to precisely trace the neural pathways underlying a range of brain disorders, including addiction, Parkinson’s disease, and mood and sleep disorders — information that has led to targeted therapies for these conditions. 

To date, optogenetics has been primarily employed in the brain, which lacks pain receptors, allowing for the relatively painless implantation of rigid devices. However, the rigid devices can still damage neural tissues. The MIT team wondered whether the technique could be expanded to nerves outside the brain. Just as with the brain and spinal cord, nerves in the peripheral system can experience a range of impairments, including sciatica, motor neuron disease, and general numbness and pain. 

Optogenetics could help neuroscientists identify specific causes of peripheral nerve conditions and test therapies to alleviate them. However, the main hurdle to implementing the technique beyond the brain is motion. Peripheral nerves experience constant pushing and pulling from the surrounding muscles and tissues. If rigid silicon devices were used peripherally, they would constrain an animal’s natural movement and potentially cause tissue damage.  

Crystals and light

The researchers looked to develop an alternative that could work and move with the body. Their new design is a soft, stretchable, transparent fibre made from hydrogel — a rubbery, biocompatible mix of polymers and water, the ratio of which they tuned to create tiny, nanoscale crystals of polymers scattered throughout a more Jell-O-like solution. 

The fibre embodies two layers — a core and an outer shell or “cladding.” The team mixed the solutions of each layer to generate a specific crystal arrangement. This arrangement gave each layer a specific, different refractive index, and together the layers kept any light travelling through the fiber from escaping or scattering away. 

The team tested the optical fibres in mice whose nerves were genetically modified to respond to blue light that would excite neural activity or yellow light that would inhibit their activity. They found that mice could run freely on a wheel even with the implanted fibre in place. After two months of wheel exercises, amounting to 30,000 cycles, the researchers found the fibre was still robust and resistant to fatigue, and could also transmit light efficiently to trigger muscle contraction. 

The team then turned on a yellow laser and ran it through the implanted fiber. Using standard laboratory procedures for assessing pain inhibition, they observed that the mice were much less sensitive to pain than rodents that were not stimulated with light. The fibers were able to significantly inhibit sciatic pain in those light-stimulated mice. 

The researchers see the fibers as a new tool that can help scientists identify the roots of pain and other peripheral nerve disorders.

“We are focusing on the fiber as a new neuroscience technology,” Liu says. “We hope to help dissect mechanisms underlying pain in the peripheral nervous system. With time, our technology may help identify novel mechanistic therapies for chronic pain and other debilitating conditions such as nerve degeneration or injury.”

Cognitive behavioral therapy eases how fibromyalgia pain is experienced by the brain

A randomized, controlled trial led by Mass General Brigham researchers demonstrates that cognitive behavioral therapy can significantly reduce the impact of fibromyalgia pain
A randomized, controlled trial led by Mass General Brigham researchers demonstrates that cognitive behavioral therapy can significantly reduce the impact of fibromyalgia pain

Patients living with fibromyalgia (FM) – a disease that predominantly affects women and is characterized by chronic pain, fatigue and brain fog – often find limited treatment options and a scarcity of explanations for their symptoms. Research led by Mass General Brigham investigators has found that cognitive behavioral therapy (CBT) can significantly reduce the burden of FM by, in part, reducing pain-catastrophizing, a negative cognitive and emotional response that can intensify pain through feelings of helplessness, rumination and intrusive thoughts. This finding is backed by neuroimaging data, evidencing reduced connectivity between regions of the brain associated with self-awareness, pain and emotional processing. Results are published on September 20 in Arthritis & Rheumatology.

“In this study, we looked at the interplay between psychological processes and the brain’s connectivity patterns in response to pain,” said co-senior author Robert Edwards, PhD, a clinical psychologist in the Department of Anesthesiology, Perioperative & Pain Medicine at Brigham and Women’s Hospital, a founding member of the Mass General Brigham healthcare system. “We wanted to explore how CBT, a talk therapy aimed at combatting maladaptive thoughts, can enhance individuals’ daily functioning and alter the brain’s processing of pain-related information.”

Edwards explains that CBT can reduce negative cognitive and emotional responses to pain. He says that while these responses are normal, they can amplify the disabling effects of chronic pain, and make conditions like FM more burdensome.

The research team for the study included researchers from three Mass General Brigham members: Spaulding Rehabilitation Hospital, Brigham and Women’s Hospital and Massachusetts General Hospital. Mass General Brigham brings together 16 member institutions, including academic medical centers, top-tier specialty hospitals, community hospitals and more. Research that spans more than one of these entities is more than the sum of its parts, helping to provide insights and unique perspectives from multiple settings and areas of expertise.

Researchers recruited 98 women, randomly assigning 64 to a treatment group receiving CBT and 34 to a control group that received education about FM and chronic pain but was not taught specific CBT techniques. All participants were between 18 and 75 years old and had a confirmed FM diagnosis for at least six months. To collect baseline data, all participants completed several validated pain and quality of life questionnaires.

Each group participated in eight intervention sessions, consisting of 60–75-minute visits with a licensed mental health provider. Participants were primarily assessed for their levels of pain interference, or a measure of how much their pain disrupted their daily activities, pain catastrophizing, pain severity and the overall impact FM had on patients’ quality of life.

Results demonstrated that those who underwent CBT experienced significantly greater reductions in pain interference. CBT participants also exhibited significantly less pain catastrophizing and reported that their FM symptoms had significantly less impact on their daily lives.

The team saw evidence that after undergoing CBT, patients experienced changes in the activities of all three networks that suggested a diminished focus on pain.

“Prior to participants undergoing CBT, we saw that certain parts of the brain linked to self-awareness and sensation were very connected, suggesting patients were pertinently aware of the pain sensation they were experiencing and internalized these symptoms,” said co-first author Jeungchan Lee, PhD, an instructor in the Department of Physical Medicine and Rehabilitation based at Spaulding Rehabilitation Hospital and the Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital. “After CBT, these connections were significantly less strong, suggesting that patients were better at separating themselves from their pain after therapy.”

This study was limited to women, partly because of its high prevalence, and partly to eliminate confounding gender differences in brain activity. In the future, the researchers hope to collect data from men and non-binary patients with FM. Additionally, CBT includes several therapeutic components, and these results cannot be generalized to assess the impact across all forms of CBT on reducing FM chronic pain.

Both Lee and Edwards agree that these findings ultimately suggest that complex chronic pain conditions like fibromyalgia should be addressed with a multitude of pharmacological and cognitive therapies.

“I hope that these findings motivate healthcare providers to consider CBT as an effective treatment option to reduce the impact of pain patients experience,” explained Edwards. “Chronic pain conditions like fibromyalgia involve long-standing patterns of changes in the central nervous system, and CBT is one among many treatment options, such as medication and physical therapy, that we know can be beneficial for those living with FM.”