When Smart Hurts: Neurodivergent Kids and Chronic Pain
There are many ways in which people can be neurodivergent, which means that their brains work differently than most others. Examples include learning differences (e.g., dyslexia, dysgraphia, auditory processing), ADHD, or autism. While this is not always the case, it is common to see these qualities in youth who develop chronic pain disorders.
For kids with ADHD or learning challenges, one reason for this correlation with chronic pain disorders is stress. These kids are so smart they unintentionally fool their teachers and parents into thinking they have no learning or attentional struggles. They also tend to be exceptionally hardworking and perfectionistic, so eventually, it becomes very stressful to keep their grades at the desired level. They often manage to do it, but it comes at a cost to their stress level. This can translate into chronic pain. Frequently, they have an internal conflict about why school is so difficult for them when they know they are intelligent.
Often, these kids are above average in all areas of intelligence but have an uneven IQ, meaning they have significant relative strengths and weaknesses. They perceive this, sometimes even subconsciously, and are confused by it. Or they have ADHD symptoms that are not necessarily the classic ones that people tend to know about (e.g., hyperactivity, impulsivity), so they are not identified. Perhaps they struggle with procrastination or meeting deadlines for long-term projects and then beat themselves up about it. Or maybe they’re aware that their parents think their bright child is lazy when they don’t fulfill their intellectual potential—inadvertently making the child feel shame and stress.
All these negative feelings can lead to chronic pain. One way to determine whether your child has ADHD or learning differences is by getting neuropsychological testing. This can be done privately or through a university program like the one at UCLA. In addition, if you request an IEP (Individualized Education Program) for your child at a public school, the school will do the testing. Unfortunately, most testing by public schools is not as comprehensive as what you will get privately.
Many youths who are on the autism spectrum also develop chronic pain. Sometimes, the family does not know that their child is autistic. The lack of diagnosis is often because their child is very high-functioning and can mask or because there is still not enough knowledge among pediatricians and teachers to identify autism in high-functioning youth. It is often a great relief for youngsters to find out they are autistic because they typically feel like they are different, but do not know why. The stress of being different without an explanation can lead to chronic pain.
In addition, autistic kids often have difficulty fitting in socially. This struggle can lead to being the victim of bullying, confusion, shame, loneliness, anxiety, and depression—all of which are associated with the development of chronic pain disorders. For kids on the autism spectrum who have social skills deficits, it can be helpful to enroll them in a social skills training group.
If your child has indications of autism (e.g., sensory sensitivities, difficulty with transitions, meltdowns, social difficulties, rigid thinking, narrow interests, sensitivity to medications), a formal assessment can be valuable. You can determine whether your child is autistic by speaking with a mental health professional specializing in high-functioning autistic youth, going to an autism program such as the one at UCLA, or inquiring at your local Regional Center. In California, Regional centers are facilities run by the Department of Developmental Services to assist state residents with developmental disabilities. Often, neuropsychological testing will miss autism spectrum disorders.
For kids with autism, there is also a higher incidence of ADHD. To compound matters even further, it is also common for people on the autism spectrum to struggle with mental health challenges—particularly anxiety and/or OCD. Another issue that puts autistic youth at greater risk for developing chronic pain is gender dysphoria. Among people with autism spectrum disorders, it is established that there is a higher chance of being trans, and the internal and external stress and confusion associated with gender dysphoria can lead to pain disorders.
People with autism tend to get stuck or perseverate on a particular topic—this quality makes having a chronic pain disorder more likely. With chronic pain, the brain is already getting stuck in a feedback loop, and this “sticky neural loop” maybe even more pronounced in those with autism.
Sometimes, the pain itself becomes the topic of focus for autistic youth who tend to have one narrow interest at a time that they home in on. If these kids complain about their pain or talk about it frequently all day and night, we implement complaint times when they can complain for 10 minutes straight without interruption but are not allowed to complain at any other time. Narrowing down complaint times can help break the fixation cycle on the pain. You can gently tell your child, “I know this is very important to you, but you need to save it until your next complaint time, which is in an hour.”
It can be difficult for autistic youth to communicate their feelings, and thus, those feelings come out as physical pain. It might even be difficult for them to communicate their physical pain in the way that neurotypical youth do because of language differences or how they perceive the pain. Their perception of pain may differ from typical patients, and sensory sensitivities may also exacerbate it. Because of the communication differences, it will be even more critical than usual to watch for behavior changes (e.g., walking with less difficulty and higher energy level) instead of relying solely on verbal reports of changes in pain.
In addition, autistic youth may respond differently to medication, either by needing much less or much more than patients typically do. They are likely to react much more sensitively to medication and experience more side effects from a lower dose than neurotypical patients. So, if you know or suspect that your child is autistic, speak to your prescribing physician about starting meds at a significantly lower dose than they usually would.
Mark was a 16-year-old boy with chronic headaches. He no longer attended school and barely left his room. His relationship with his sister and parents had become very tense, which led him to isolate even more. He had no friends and few ways to pass the time, so he spent a lot of time focused on his pain.
It was clear to me that he was autistic. He was smart, funny, and loved photography. But he did not take pictures because he felt he was in too much pain to go out. He was very anxious, lonely, and stressed. Once we established that his brain worked differently than others (he liked the analogy that his brain ran on a PC while the brains of others ran on a Mac), it was easier for his parents to understand his behaviors. This insight allowed them to soften their tone with him because they understood he was not being lazy on purpose or countering them just to be obstinate.
Mark’s mother was highly anxious. She was able to see that her anxiousness was also feeding his anxiety because—despite his seeming like he didn’t care—he was very in tune with her emotions. Mark worked on tools for his anxiety and was able to understand how he differed from others. Mom sought out her own therapy, as well. We also worked on treatment for OCD, which I realized accounted for some of the reasons he did not leave his room. He still had headaches, though, and spent a lot of time perseverating on them.
We found a professional photographer to come to Mark’s house and show him how to use a camera manually, and they got to know each other. Eventually, the photographer got him outside into the backyard and further from the house. This ability to leave the house led to going to school for just photography class and then a slow reintegration to school from there. Social skills training helped Mark discover ways to connect with the other students. While he did not have many friends, he made one friend in a photography class with whom he could discuss their shared interests. That was enough to get him back into the world, and eventually, he went on to college.
It is challenging to be a child or teen with any neurodivergent brain, whether it be because of autism, learning differences, or ADHD. It can feel like no one understands them or they speak a different language than everyone else. The stress, anxiety, depression, and loneliness of it can make them more likely to develop a chronic pain disorder. Identifying these challenges is vital so your child can get academic, social, and emotional help. Feeling understood and gaining strategies are invaluable—they can help your child in all aspects of life and reduce physical pain.
