Migraine headaches are more common among autistic adults than the general population. There many kinds of headaches, and migraine headaches are much more common among autistic adults (42%) than the general population (10%). As with the general population, females are three times more likely than males to experience migraines, so autistic females are especially prone to these types of headaches. As noted in our article on pain, it can be difficult for nonverbal adults to communicate when they have a headache and what types of symptoms they are experiencing. Some signs of migraine in autistic adults can include: changes in eating habits nausea or vomiting sudden need to be in a dark space (photophobia) sudden need to be in a quiet space (phonophobia) repeated touching or banging of the head eye movement or problems that indicate aura (tunnel vision, blind or color spots) Treatment for headaches can vary depending on the kind of headache and any other medications or supplements currently prescribed. Always consult with all prescribing clinicians when considering prescription migraine medication or nutritional supplements. The American Migraine Foundation has advice for managing migraines, including: Eat small, balanced meals at regular intervals and avoid getting too hungry Keep a regular sleep and exercise schedule Limit intake of processed or fried foods, chocolate, artificial sweeteners and foods with nitrates and nitrites (check the labels on bacon, hot dogs, and other cured meats) Avoid or limit caffeine and alcohol (especially red wine and beer) Keep a food diary to identify foods that might trigger migraines Harvard Health Publishing also offers specific advice on managing headaches: 5 Migraine Questions Answered When headaches won’t go away Older women and migraine with aura Which migraine medications are most helpful?

Gastrointestinal problems occur two to three times more often in autistic people than in the general population. Gastroesophageal Reflux Disease (GERD) is common in both autistic children and adults, and can affect appetite, sleep, and behavior. Reflux is the backward flow of acid from the stomach into the esophagus. GERD is when the closure of the lower esophagus becomes weak from recurring acid reflux. Symptoms include heartburn, regurgitation, chest pain, dry cough, shortness of breath, or trouble swallowing. Persistent GERD can lead to more serious health conditions like esophagitis. Dr. Timothy Buie, a pediatric gastroenterologist at Boston Children’s Hospital whose research and practice focuses largely on autistic patients with digestive issues, notes that non-verbal autistic people sometimes exhibit behaviors that indicate GERD, reflux, or other digestive issues. In this video, Dr. Buie explains some of the behaviors that may indicate digestive upset: Dr. Tim Buie, Gastroenterologist at Boston Children’s Hospital, on signs of gastrointestinal distress in autistic adults If frequent heartburn or reflux is suspected it should be brought to the attention of a PCP. They may recommend over the counter remedies such as antacids, famotidine, or omeprazole. Regardless, any condition that persists should be referred to a gastroenterologist for proper assessment, diagnosis and treatment. Autistic adults requiring treatment for GERD may need to have an endoscopy, which is a process in which a gastroenterologist examines the digestive tract by inserting a tube with a tiny light and a camera down the throat. Because medical procedures of this kind can be particularly stressful for autistic people, patients and caregivers should discuss accommodations for making the procedure as tolerable as possible with the gastroenterologist and hospital staff. [link to accommodations article] Dietary and Lifestyle changes to help ease reflux/GERD Diet can contribute to the occurrence of increase stomach acid. To reduce the occurrence and uncomfortable symptoms of reflux/GERD, autistic adults will want to limit certain foods, including: mint orange/grapefruit juice tomatoes onions chocolate fried/spicy foods carbonated drinks Foods and ingredients that can help: banana rice oatmeal melon ginger salmon sweet potatoes carrots beets Lifestyle changes to consider: avoid eating near bedtime drink plenty of water eat several small meals instead of three large ones placing a bolster under a mattress or using extra pillows to keep the head raised, which lessens the chance of acid rising to irritate the esophagus during sleep For autistic adults in day programs or who live in residential placements, communication about dietary health can assist in managing GI conditions. Our Dietary Plan Tool is one way of helping caregivers and staff understand and contribute to positive health across the lifespan. A tool for tracking bowel movements when abdominal pain is a problem

Abdominal pain can be a frequent concern throughout the lifespan of autistic people. A diagnosis can be challenging, especially for nonverbal adults, or those with limited communication skills who may have difficulty identifying and communicating the source of their pain. Dr. Tim Buie, a pediatric gastroenterologist at Boston Children’s Hospital, notes that his nonverbal autistic patients communicate digestive discomfort in a number of ways, including: self-biting and mouthing behaviors chewing clothes (often sleeves), paper or other objects ingesting nonfood items (pica) aggression against others twisting of the midsection or rubbing the abdomen against furniture rubbing or scratching of the neck and throat areas escaping or bolting an increase in repetitive behaviors or vocalizations. Collecting data to help locate the cause of pain It’s important to note that GI issues are not always the culprit in digestive discomfort situations. Other pain-related behaviors could be caused by dental issues, migraine headaches, or other kinds of physical distress. Collecting data on toileting and food intake behaviors, as well as other GI-related activities, can help the clinician pinpoint what might be causing pain. See our article more information on communicating about pain. Clinicians have found that when patients who exhibit aggression and/or self-injury are evaluated and found to have underlying GI distress, the treatment of that condition usually results in an improvement in behavior. In this video, Dr. Buie explains some of the behaviors that may indicate digestive upset: Dr. Tim Buie, Gastroenterologist at Boston Children’s Hospital, on signs of gastrointestinal distress in autistic adults Bowel movements Tracking bowel movements can be helpful, as abdominal pain may occur at certain times during the digestive process. The Bristol stool chart, which helps document the timing and outcome in bowel movements, is an easy-to-use tracking tool. Food intake Sometimes certain foods can cause abdominal pain because they are hard to digest. Fried or spicy foods, dairy products, or vegetables such as spinach, broccoli, and cabbage can all cause discomfort. The Centers for Disease Control has a free, downloadable simple food diary that can help patients record eating habits to identify any potential problem foods or ingredients. Warning signs of something more serious The sudden onset of abdominal pain may indicate something more serious than digestive upset. Pain can that appears to be located on the right side of the lower abdomen or the lower back that is accompanied by nausea, loss of appetite, or fever requires immediate medical attention. Such pain could indicate appendicitis, kidney stones, diverticulitis, or another condition that requires prompt specialized care. Although GI symptoms are common in adults, there is no single set of signs, symptoms, or treatments that applies to all autistic patients. AAHR has articles on the most common GI conditions: GERD and acid reflux Constipation Pica

This most common of complaints for autistic people may require consulting a gastroenterologist and a nutritionist. Constipation is the most common gastrointestinal complaint in autistic people as well as in the general population. For many people, constipation is a chronic health problem that can develop and persist at any point in the lifespan. Signs of constipation include: three or fewer bowel movements a week lumpy or hard stools pain during bowel movements difficulty completely emptying the bowel. Symptoms of constipation can present differently in autistic people, especially those with more severe language and cognitive impairments. For example, contorting the body in unusual ways can indicate abdominal pain. Dr. Tim Buie, a pediatric gastroenterologist at Boston Children’s Hospital, notes that his autistic patients sometime exhibit “behaviors such as pressing their bellies onto a chair, leaning onto furniture, or lying flat on their bellies to kind of seek pressure on their bellies. That’s a common thing that people have associated with constipation.” These behaviors may indicate the need to consult a gastroenterologist. In this video, Dr. Buie explains some of the behaviors that may indicate digestive upset: Dr. Tim Buie, Gastroenterologist at Boston Children’s Hospital, on signs of gastrointestinal distress in autistic adults Functional fecal retention (FFR) Functional fecal retention (FFR) is a gastrological condition that appears frequently in autistic people. It is characterized by more regularly occurring stools but with less complete evacuation. Because the bowel is never completely empty, even with regular toileting occurrences, symptoms such as abdominal pain, bloating, or toileting accidents caused by a loss of control of the pelvic floor muscles can develop. Anxiety, sensory, or attention issues can contribute to the development of FFR. Note that anxiety might not initially be directly related to toileting issues, but if constipation persists it can itself become a source of anxiety and lead to FFR. Tracking toileting patterns In addition to caregivers, personal care attendants and group home staff can provide feedback on any patterns such as constipation, FFR, soiling, withholding, or not using the toilet often enough. Tracking toileting behaviors and characteristics of bowel movement can help provide much needed detail for the PCP or gastroenterologist. The Bristol Stool Chart is a useful tool specifically for tracking bowel movements. Caregivers and autistic patients can record data and look for patterns that, in consultation with a PCP or gastroenterologist, can identify and address sources of constipation. Lifestyle changes to help ease constipation Diet and certain medications can contribute to chronic constipation. Autistic adults will want to have regular conversations with a gastroenterologist (and possibly a nutritionist) to determine the underlying causes and best approaches for managing it. Caregivers are advised to take cues from the autistic adult’s clinician and avoid making diet, food, or exercise into battleground issues, as stress and anxiety can lead to or exacerbate bowel issues. Lifestyle changes that may be helpful for constipation include staying hydrated by drinking plenty of water and eating foods that are rich in water and/or fiber. Keep in mind that adjustments in diet should be approached slowly; adding or eliminating one kind of food at a time will make it easier to measure the impact of the change. A nutritionist can provide more tailored recommendations for autistic adults; however, some general examples of foods to help alleviate constipation include: whole-grain breads oatmeal beans and chickpeas veggies: carrots, broccoli, peas, and collard greens nuts: peanuts, almonds, and pecans fruit: berries, apples, and pears High-fat foods tend to be low in fiber and can slow down digestion. Foods that are high in processed sugar, salt, and/or fat content, and low in water, can contribute to chronic constipation. Limit or avoid foods such as: fast food, such as french fries and chicken nuggets processed meats with nitrates like hot dogs and sausages salty snack foods Regular exercise helps stimulate bowel movement, so daily movement such as walking or swimming can help with chronic constipation. Frequent use of over-the-counter laxatives should be avoided. For those in day programs or who live in residential placements, communication about dietary health can assist in managing conditions like constipation. Our Dietary Plan Tool is one way of helping caregivers and staff understand and maintain good health in autistic adults. Health Care Plan Template for communicating about current health and dietary needs and interventions.

Autistic people are more likely to suffer from gastrointestinal (GI) ailments than the general population. They are especially more difficult to identify and diagnose in adults with communication challenges. GI... Autistic people are more likely to suffer from gastrointestinal (GI) ailments than the general population. They are especially more difficult to identify and diagnose in adults with communication challenges. GI symptoms can range from mild stomachaches to serious, persistent vomiting. There is no single set of signs, symptoms, or treatments that applies to all autistic patients. AAHR has articles on the most common GI conditions: abdominal pain constipation GERD and acid reflux Seeking care Although GI symptoms are common, no digestive condition should be accepted as simply part of being autistic. It’s important that GI symptoms are addressed by a PCP or gastroenterologist to avoid serious health consequences during the adult years. An adult patient who has been under the care of a pediatric gastroenterologist for ongoing digestive issues should transfer their care to an adult gastroenterologist. Communicating about the symptoms, how they present, and how they’ve been treated — through diet and/or medication — is important to assuring good health over the lifespan. Behavior as communication about pain Caregivers should note that behaviors of all kinds are a form of communication, and sometimes that communication is speaking about pain. Aggression and self-injury are not core symptoms of autism. When such behaviors do appear, it’s important to consider whether they indicate that an autistic adult is in pain. Gastrointestinal problems often create the kind of discomfort that can lead to behaviors (or an increase in the kinds of behaviors) that are core signs and symptoms of autism. Examples of behaviors that may indicate pain are: self-biting and mouthing behaviors chewing clothes (often sleeves), paper, or other objects ingesting nonfood items (pica) aggression against others twisting of the midsection or rubbing the abdomen against furniture rubbing or scratching neck or throat areas escaping or bolting an increase in repetitive behaviors or vocalizations. Autistic adults or caregivers should record when, where, and how often these behaviors occur, in preparation for discussing them with a PCP or gastroenterologist so that a full diagnosis can be made. If the underlying cause turns out to be GI distress, treatment of that condition very often results in an improvement in the behavior(s). AAHR has more information on communicating about pain. Keep in mind that GI issues are not always the culprit. Mental health issues such as anxiety can also trigger GI symptoms, and other pain-related behaviors could be caused by dental issues, migraine headaches, or other kinds of physical distress. Each of these possibilities can be discussed with a PCP, who can then make referrals to one or more specialists. We recognize that gastrointestinal problems are very common in the population of individuals with autism. And that’s true at all ages, from childhood to adulthood. The frequency of GI issues in individuals with autism is greater than the general population. It’s perhaps 2 to 3 times more frequent to see gastrointestinal problems in this population than the general population. Dr. Tim Buie, Pediatric Gastroenterologist, Boston Children’s Hospital

Understanding some of the common medical conditions that occur in autistic adults is a key part of managing medical care. Health needs change for everyone as they get older and it’s no different for autistic people, but understanding and approaching the aging process can look a little different for autistic adults. Some medical conditions occur more frequently in autistic people and they may also present differently than in their neurotypical people. Medical conditions may often appear in childhood while others might only emerge later in life. They often occur jointly with other health conditions and are often referred to as “co-occuring” or “co-morbid” conditions. Mental health conditions Mental health issues are common in people with autism, with up to 80% experiencing some mental health condition. They can include: ADHD (attention deficit hyperactivity disorder) Anxiety Depression Irritability Physical conditions Many physical conditions, including heart and lung conditions and diabetes, are more common in adults with autism. Other common physical conditions may include: Neurological issues Migraine headaches Seizures Sleep problems Stomach and digestive problems Constipation Acid reflux (GERD) Dietary issues (food allergies and intolerances) Pica Abdominal pain

Anxiety and depression are common in autism but may appear different from neurotypical adults. Anxiety and depression are common among autistic adults, but may look different About 70% of autistic people suffer from some form of anxiety, which can occur at any age. Anxiety disorders can include generalized anxiety disorder, panic disorder, social anxiety disorder, and phobia-related disorders. Autistic people are four times more likely to experience depression during their lifetime than the general population. Signs and symptoms of anxiety and depression in both neurotypical and autistic patients include: Anxiety Feeling nervous, restless or tense Having a sense of impending danger, panic or doom Having an increased heart rate (tachycardia) Breathing rapidly (hyperventilation) Sweating Trembling Feeling weak or tired Trouble concentrating or thinking about anything other than the present worry Having trouble sleeping Experiencing gastrointestinal (GI) problems Having difficulty controlling worry Having the urge to avoid things that trigger anxiety Depression Feelings of sadness, tearfulness, emptiness or hopelessness Angry outbursts, irritability or frustration, even over small matters Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports Sleep disturbances, including insomnia or sleeping too much Tiredness and lack of energy, so even small tasks take extra effort Reduced appetite and weight loss or increased cravings for food and weight gain Anxiety, agitation or restlessness While anxiety in autistic individuals is frequently heightened by change, especially changes in routine or anticipation of new situations or expectations, the symptoms often present differently than in neurotypical patients. Sometimes anxiety that is expressed through behavior changes in autistic adults is attributed to other factors or grouped with “typical” autistic symptoms. Anxiety in patients with more severe language and cognitive impairments can be even harder to distinguish. Some of the common manifestations of anxiety in autistic adults can include: Social awkwardness and reluctance to engage in relationships or group activities Perseverating on small worries, often manifested by repetitive questioning Increases in stereotypy or repetitive behaviors (stimming) Excessive adherence to rituals or routines Negative thoughts, especially in children and young adults Skin and/or nail picking Pacing, escaping or running away Meltdowns or tantrums Depression can present in some more typical ways, such as excessive sleeping, loss of interest in preferred activities, and poor attention to self-care. Autistic adults and caregivers should be aware of signs and symptoms of anxiety and depression and report them to their PCP and/or mental health provider. Because behaviors that appear to be anxiety-related can also be symptoms of various medical conditions it’s important to be proactive so that both the source of the anxiety and its underlying cause can be identified, whenever possible. Drs. Chris McDougle and Robyn Thom are psychiatrists who specialize in treating autistic patients. They offer advice on recognizing depression in autistic adolescents in a Harvard Health article, “How can you support your teenager with autism spectrum disorder if they are depressed?”, and the suggestions they offer can also be applied to adults. Therapeutic Treatment for anxiety and depression Self-advocates and autistic people who feel comfortable sharing their feelings can benefit from talk therapy. It’s important to consider the best strategy for understanding and treating anxiety or depression according to the needs of the autistic person. Some approaches to treating anxiety and depression include cognitive behavioral therapy (CBT), mindfulness therapy, dialectic behavioral therapy (DBT), and neurofeedback. Medication Treatment for anxiety and depression Medication and autism is a complex topic. Prescription, over the counter, and complementary medications don’t always work for all patients and side effects can affect long-term health. Clinicians who treat autistic patients often find that medications and dosages that work well for neurotypical patients are less effective for those with autism. It’s important to discuss medication strategies with the PCP or any prescribing clinician to ensure that any psychotropic medications are tailored specifically to the unique needs of the autistic patient. For example, Selective Serotonin Reuptake Inhibitors (SSRIs) are often used as a first line medication for anxiety in neurotypical patients. However, some experts in the autism field caution against their use in autistic patients, especially children and adolescents. Buspirone and mirtazapine in very small doses to start have been shown to help anxiety, with slow and steady dosing up to a typical amount. Harvard Medical School’s free Clinician Course for medical providers, Clinical Care for Autistic Adults, provides clear and extensive advice to medical providers about best practices for treating autistic adults, including specific guidelines for medication. Another useful resource is the Parent’s Medication Guide from the American Psychiatric Association Suicide risk Any language or behavior that presents a risk of serious self-harm or suicide should be reported immediately to a mental health professional or PCP. They can offer instructions about the best way to access emergency mental health services to get immediate attention. The Suicide Hotline can be reached by calling or texting 988 from any phone. They have resources specifically designed to meet the needs of neurodiverse and autistic people: Warning signs of suicide for autistic people Crisis supports for the autistic community Spark for Autism explores the risk of suicide in autistic people. Finding Treatment for anxiety and depression ECHO Autism has a directory for finding clinicians trained in best practices for treating autistic children and adults. Psychology Today has an excellent directory for finding therapists, many of whom provide autism-competent care. The AASPIRE Toolkit is a good resource that can help patients find an adult provider who understands autism-competent care. Pennsylvania’s Autism Services, Education, Resources and Training Collaborative (ASERT) has a resource, “Be Well, Think Well”, with tools that self-advocates and caregivers can use to help with anxiety. The National Alliance on Mental Illness (NAMI) offers help finding mental health providers and offers links to support groups. The Substance Abuse and Mental Health Services Administration offers 24-hour referral and support. SAMHSA’s National Helpline800-662-HELP (4357) TTY: 800-487-4889

Dr. Chris McDougle, a psychiatrist who is the Director of Lurie Center for Autism, notes that “ADHD is very common in children with autism. And like in regular ADHD, the... Dr. Chris McDougle, a psychiatrist who is the Director of Lurie Center for Autism, notes that “ADHD is very common in children with autism. And like in regular ADHD, the hyperactivity and impulsivity can lessen over time when you get into teenagers or early adult years. But the inattention can persist.” Some of the signs of ADHD in autistic adults are: Hyperactivity Impulsivity Inattention Problems with organization or executive function Medication Many patients with ADHD benefit from medication but experts like Dr. McDougle indicate that autistic patients respond differently to medication than their neurotypical peers. Harvard Medical School’s free Clinician Course for medical providers, Clinical Care for Autistic Adults, provides clear and extensive advice to medical providers about best practices for treating autistic adults, including specific guidelines for medication. Additional content in development September 2023

Sleep problems are common in autistic people. As many as 50-80% experience some kind of sleep difficulty as compared to 25-30% of neurotypical people. Sleep problems are common in autistic people. As many as 50-80% experience some kind of sleep difficulty as compared to 25-30% of neurotypical people. Sleep issues vary widely and include: Difficulty falling asleep Interrupted sleep Early waking Needing very little sleep When sleep problems arise in the adult years, there could be a variety of explanations, including environmental factors, changes in family or living arrangements, transitions to new day programs or employment, or environmental factors such a seasonal allergies or other air quality issues. Sleep problems can also be caused or exacerbated by underlying medical conditions such as: Sleep apnea GERD or acid reflux Constipation Seizures Erupting wisdom teeth Restless legs syndrome Psychological factors and emotional distress can also contribute to sleep problems. Anxiety, depression, stress, or trauma are just a few of the factors that can create or exacerbate sleep problems. Some types of medications, such as stimulants, beta blockers, corticosteroids, and decongestants can also affect the quality and duration of nighttime sleep. Lifestyle changes can help Six simple things to do to improve sleep: Increase the amount of exercise during the day, such as walking and swimming Minimize alcohol and caffeine intake Limit screen use at night when possible If heartburn or acid reflux are suspected, prop up the head of the bed or use extra pillows to avoid laying completely flat on the bed Keep the bedroom cool and as dark as possible Consider a weighted blanket to help calm nerves and give calming sensory input Seeking care When simple interventions don’t help, make an appointment with a PCP. A wearable device such as a smart watch or using a phone app that tracks sleep quality and waking patterns can provide useful feedback. Based on symptoms, history, and assessment, a referral to a neurologist or mental health clinician may be recommended. If symptoms include snoring or disrupted breathing, a sleep study to rule out sleep apnea or narcolepsy can often be done at home. If an overnight sleep study is required, there are accommodations than can make these studies less stressful. The Vanderbilt Kennedy Center has a guide for helping children with sleep study protocol that is also useful for adults. Resources for sleep issues Learn more about sleep and autism, and the impact of sleep patterns on other conditions common in older adults: Spectrum News discusses the latest sleep research in Cracking Sleep’s Conundrum Harvard Health Publishing on Sleep Problems and Risk of Stroke Harvard Health Publishing on sleep problems and the increased risk of cardiovascular disease Healthy Sleep Tips from the Harvard Division of Sleep Medicine Sleep Strategies for Teens with Autism Spectrum Disorder from the Vanderbilt Kennedy Center and Autism Speaks Weighted blankets can promote better sleep.