HEALTHCARE IMPROVING THE LIVES OF PEOPLE WITH AUTISM AND THE PEOPLE WHO CARE FOR THEM Management and Autism

ensory stimulation can be perceived very differently in people with autism spectrum disorder. It is Scommon for children to be averse to certain types of taste, texture, and flavors. How they perceive pain, however, is not very well understood. Some people believe that people with autism may have a decreased sense of pain, but pain can manifest in different ways. Identifying and managing pain can be challenging for both healthcare providers and parents. Methods to assess pain People with ASD or intellectual disability, Assessing pain in children can often be a or any type of cognitive impairment may challenge for providers and parents. For express pain in other ways and may require older children, the number is a customized FLACC scale. This would typically used with 0 representing no pain incorporate individualized pain behaviors and 10 being the worst pain imaginable. The which is more reliable in detecting pain in faces pain scale allows children to choose a individuals with cognitive impairment. Again, face – images range from happy to crying – this would require additional time and that shows how their pain is making them understanding of the scale. feel. For children who are nonverbal, the FLACC score is often utilized. This method Research on autism and pain looks at Facial expression, Leg positioning, Not much research has been done on the Activity level, Crying and Consolability. topic of autism and pain, partly due to the Some case studies have found that when This pain scale requires more time but challenges of assessing pain in children with asked their pain score, verbal individuals can reliably assess pain responses in communication difficulty and partly due with ASD respond with low scores, but neurotypical individuals. to the common belief that people with when asked how much discomfort they autism have decreased sensitivity to pain have, the score tends to be higher. or a high pain threshold. Studies conducted with people with high-functioning ASD How does pain manifest in children tend to use a pain scale of 0-10. On this with autism? scale, patients tend to respond with lower Children with ASD may not express numbers, but other methods of rating pain pain in typical ways – crying, moaning, or have shown varying results. Some studies withdrawing from a painful stimulus – and have used observations of providers therefore may often be labeled as less or parents, which also tended to show sensitive to pain. Several case studies have decreased sensitivity to pain in children with shown that though children may not show autism. these typical signs or may not react to pain in the moment, they still have physiologic Other studies have challenged the idea that reactions and behavioral reactions. Even people with autism experience less pain. with no obvious reaction to a painful These studies found that pain is expressed stimulus, they may start breathing fast or differently among those with autism. One their heart rate may increase. They may have study comparing children with autism, increased stimming behaviors, aggression, or children with intellectual disabilities, and anxiety after the painful incident. Individuals neurotypical children showed that both with ASD also tend to show behavior behavioral changes and physiologic changes changes for longer after the painful incident (i.e. heart rate) were higher with pain, but than neurotypical children or children with face scores did not vary among the groups. intellectual disabilities. continued on back

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When assessing for pain in a nonverbal look for other possible medical causes for shown to reduce anxiety or fear during child with ASD, close attention should be the behavior changes, like abdominal pain, procedures. paid to increased aggression, self-injurious , or urinary tract infection. • Deep pressure: Firm pressure, behaviors, stimming, or any behavior through squeezing or a tight hug, has been that is not typical for that child. If they For pain management during painful or shown to significantly decrease anxiety are acting unlike themselves, look for a stress-inducing medical procedures, like a and stress in individuals with autism. This possible source of discomfort or pain blood draw, there are several techniques method can also be used during medical that may be present or was present in the that can be used. Non-pharmacologic procedures to decrease discomfort. Every near past. In a more verbal child, asking (medication) methods are preferred. Every child is different though, so deep pressure if they have pain or if something hurts child may respond differently to these may be too much sensory stimulation for may not accurately reflect what they are techniques, so some trial and error may be some. feeling. Using words such as “discomfort”, necessary to determine the best method “uncomfortable”, or “anxiety” may better for your child. Medications can also be used to control approximate the level of pain they are in. • Distraction: If your child has a pain, as well as anxiety, during medical preferred activity, engaging them in procedures. Pre-medication with What can I do about my child’s this activity during the procedure may acetaminophen or ibuprofen may be pain? significantly reduce their focus on pain. helpful in reducing pain. For extremely If a source of pain can be identified, This could include watching a show, painful procedures, an opioid may also be treating that pain is of utmost importance. blowing bubbles, deep breaths, playing with reasonable, per a physician’s assessment. Treatment would be the same as for any a toy, or calming movements such as a Anti-anxiety medications may be helpful other child— such as Tylenol or parent rocking them. in reducing not only anxiety but also pain ibuprofen, ice, or heat (if tolerated), and • Sensory distractions: There are as they are typically slightly sedating. If you rest. Parents and providers should be wary several items that can be used to distract feel it is right for your child, discuss these of hidden injuries that the patient may not a child’s senses from the painful stimulus. options with your physician. be able to communicate about, such as a A vibrating device or ice placed on the fracture or insect bite. area of a blood draw or lumbar puncture When it comes to pain management in can reduce the pain signal sent to the autism, remember these key points: If the source of pain cannot be identified brain. • Always rule out pain when atypical or you are unsure of the severity of the • Topical pain control: There are a behaviors occur or when certain injury/illness, always err on the side of few topical medications that can be used behaviors increase. caution and have a physician assess your to reduce pain sensation. A cooling spray • Children are all different, whether child. They should do a full skin exam at the site of the procedure is quick and in how their pain manifests or in what to look for scratches, bites, rashes, or easy. A numbing gel or cream can also strategies work best to control their pain. other injuries. If an injury is suspected to be applied 20-30 minutes prior to the • There are lots of non-medication a limb, x-rays may be needed to rule out procedure, which has been shown to be options to help manage pain and anxiety a fracture. If no clear injury or illness can an effective way to manage pain during during medical procedures. be identified, parents and providers should IV sticks. However, this has not been

Written by Alizah Patterson, MD, Additional Resources Pediatric Resident, PL-3 Visual Support for Hospital and Doctor Visits (includes the graphics shown in this The Herman & Walter Samuelson article) Children’s Hospital at Sinai https://pathfindersforautism.org/articles/healthcare/visual-supports-for-hospital- visits/ © 2020 Pathfinders for Autism PFA Tips: Going to the Hospital https://pathfindersforautism.org/articles/healthcare/pfa-tips-going-to-the-hospital/

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