Emergency Room Resources
About Us
The Emergency Room environment is often overwhelming for anyone, but especially for children, teens, and adults on the Autism Spectrum. Not only are you dealing with a medical emergency, but sights, sounds, smells, and the accelerated pace of hospital emergency services can overwhelm the senses of an individual with autism.
Special thanks to Ability Central for their financial support and making this project possible.
Emergency Room Resources for Parents/ Caregivers
Real-life strategy to reach your goals.
Learn how to prepare and advocate for a child with Autism during an emergency room visit. This guide provides essential tips for making ER visits less stressful for individuals with Autism.
Before You Go
· Pack Comfort Items: Bring a tablet or phone with a charger and headphones, favorite sensory items or toys (like spinners, stress balls, blankets, stuffed animals, or sunglasses).
· Medication List: Have all your child’s medications listed on your phone or written down. Completing an “All About Me” profile and having a picture of it on your phone can be very helpful.
· Do not pack Food and Drink: Be aware that your child might not be allowed to eat or drink if surgery or medical tests are needed.
When You Check-In
· Provide Clear Information: Clearly describe the reason for your visit and any symptoms your child is experiencing.
· Mention Autism Diagnosis: Inform the staff that your child has Autism and co-occurring conditions.
· Request a Quieter Place to Wait if Necessary: Ask if there is a quieter place to wait, explaining why it is needed (e.g., sensory issues). For example, you could say:
“My child has Autism. They communicate best with simple words. We’re here because they have a high fever and seem to be in pain. They are very sensitive to noise and bright lights. Do you have a quieter place where we can wait so they don’t get overstimulated?”
Waiting to Be Seen
· Understand the Wait: Remember that critically ill or injured patients need immediate treatment, lab tests take time, and sometimes a specialty room is needed.
· Tips While Waiting:
· Distract and engage your child with a tablet, phone, or book.
· Try to find a quieter corner of the waiting room.
· Explain what’s happening to your child in simple terms, if your child finds that reassuring.
Communicate Often and Clearly
· Talk to Everyone: You’ll interact with many different people, so make sure to communicate your child’s needs, possible triggers, and solutions to everyone.
· All About Me Profile: Completing an “All About Me” profile before your visit and having a picture of it on your phone can be very helpful.
Key Information to Share
· Medical Issue: Clearly describe why you’re there and any symptoms your child is experiencing.
· Autism Diagnosis: Inform the staff that your child has Autism and mention any specific needs or behaviors.
· Co-occurring Conditions: Mention any other conditions, fears, or anxieties your child has.
· Support Person: Let them know if you want a family member or caregiver to stay with you.
Sensory Sensitivities
· Noise and Lights: Inform the staff if what your child is sensitive to. This may include noise, bright lights, sounds, being touched, or taking pills or medication. Suggest ways to manage these sensitivities. For example, “my child does not like being touched so can you please explain what you are going to do before you touch him.”
· Comfort Items: Mention any items that help your child stay calm, like a favorite toy or blanket.
Communication Preferences
· How Your Child Communicates: Explain how your child communicates best, whether it’s through speech, gestures, or a communication device.
Advocacy and Assistance
· Be Their Advocate: If your child is overwhelmed, help explain their sensory sensitivities and suggest solutions like waiting outside or in a room with the lights off.
· High Pain Tolerance: Inform the staff if your child has a high pain tolerance and may not react typically to pain.
· Touch Sensitivity: Let them know if your child doesn’t like to be touched and ask them to explain what will happen before any examination.
Medical Procedures
· Visual Schedules and Tools: If drawing blood, inserting an IV, or giving a shot is necessary, ask if the hospital has tools like a visual schedule, shot blocker, or J-Tip to make the process easier.
Reinforce Positive Behavior
· Use Reinforcement: Use reinforcement that your child enjoys, like praise or the promise of something enjoyable after the ER visit. This can help make the experience less stressful.
Due to language and learning problems, individuals with Autism and other developmental disabilities may have difficulty understanding hospital procedures and medical tests, which can spike their already high stress levels. ER staff are usually not trained to work with our population. Social narratives, or “social stories,” can help individuals with ASD and developmental disabilities better understand what is expected in various environments.
· Emergency Communication Board
https://ieAutism.org/wp-content/uploads/2022/09/First-Responder-Communication-Board-Final-1.pdf
· Blood Draw
· More resources Visit Mass General Hospital’s Social Stories
https://www.massgeneral.org/children/Autism/lurie-center/social-narratives
· Sexually transmitted infections
· Contraception
· Pregnancy-related issues
· Substance abuse treatment
· Mental health concerns
These services keep these visits confidential. If parents are present, they will be asked to leave the room – no matter if they have Autism or a developmental disability. Additionally, in compliance with these laws, many hospitals and insurance plans restrict the information parents and guardians can view in their teenager’s account.
You have options, but you must pre-plan now:
· If you feel your child has diminished capacity to make medical decisions and you need full access to their chart, you can request Diminished Capacity Proxy Access from your child’s doctor. With approval from the treating physician, full access will be granted to the parent/caregiver until they turn 18. (The standard may be for someone qualifying for conservatorship when they turn 18 years). Some medical agencies offer two proxies – a standard proxy, where the parent can view items in their electronic records, and the Diminished Capacity proxy, where you make health care decisions of the patient. Each medical practice has its own form, which a physician must complete.
· Another option depending on your child’s ability to communicate is having your child tell the doctor they want you to stay to assist with supported decision-making. The child must initiate asking for the parent/caregiver to stay in the room and help with decision-making. All people have the right to the option to ask for help when they want to.
There are also other formal processes to identify whom you want to help you make decisions when needed, such as a Power of Attorney or an Advanced Medical Directive.
Going as an Independent Autistic
Real-life strategy to reach your goals.
Understand how to advocate for yourself and request accommodations during a hospital visit. Creating an “All About Me” profile can help ER staff understand your medical and sensory needs.
Before You Go
· Pack Comfort Items: Bring a tablet or phone with a charger and headphones, favorite sensory items or toys (like spinners, stress balls, blankets, or sunglasses).
· Medication List: Have all your medications listed on your phone or written down or consider completing an “All About Me” profile and having a picture of it on your phone that you can pull up at the hospital when you need it.
When You Check-In
· Provide Clear Information: Clearly describe the reason for your visit and any symptoms you are experiencing.
· Mention Autism Diagnosis: Inform the staff that you have Autism and any co-occurring conditions.
· Request a Quieter Place to Wait if Necessary: Ask if there is a quieter place to wait, explaining why it is needed (e.g., sensory issues). For example, you could say:
“I have Autism. I am here because I have a high fever and am in pain. They are very sensitive to noise and bright lights. Do you have a quieter place where we can wait so they don’t get overstimulated?”
Waiting to Be Seen
· Understand the Wait: Remember that critically ill or injured patients need immediate treatment, lab tests take time, and sometimes a specialty room is needed.
· Try to distract yourself with a tablet, phone, or book and
· Ask if there is a quieter space or try to find a quieter corner of the waiting room.
Communicate Often and Clearly
· Talk to Everyone: You’ll interact with many different people, so make sure to communicate your child’s needs, possible triggers, and solutions to everyone.
· All About Me Profile: Completing an “All About Me” profile before your visit and having a picture of it on your phone can be very helpful.
Key Information to Share
· Medical Issue: Clearly describe why you’re there and any symptoms your child is experiencing.
· Autism Diagnosis: Inform the staff that your child has Autism and mention any specific needs or behaviors.
· Co-occurring Conditions: Mention any other conditions, fears, or anxieties your child has.
· Support Person: Let them know if you want a family member or caregiver to stay with you.
Sensory Sensitivities
· Noise and Lights: Inform the staff if what your child is sensitive to. This may include noise, bright lights, sounds, being touched, or taking pills or medication. Suggest ways to manage these sensitivities. For example, “my child does not like being touched so can you please explain what you are going to do before you touch him.”
· Comfort Items: Mention any items that help your child stay calm, like a favorite toy or blanket.
Communication Preferences
· How Your Child Communicates: Explain how your child communicates best, whether it’s through speech, gestures, or a communication device.
Advocacy and Assistance
· Be Their Advocate: If your child is overwhelmed, help explain their sensory sensitivities and suggest solutions like waiting outside or in a room with the lights off.
· High Pain Tolerance: Inform the staff if your child has a high pain tolerance and may not react typically to pain.
· Touch Sensitivity: Let them know if your child doesn’t like to be touched and ask them to explain what will happen before any examination.
Medical Procedures
· Visual Schedules and Tools: If drawing blood, inserting an IV, or giving a shot is necessary, ask if the hospital has tools like a visual schedule, shot blocker, or J-Tip to make the process easier.
Provide information on:
· The best way to communicate.
· Sensory issues.
· How well you tolerate long waits.
· If you need a quiet environment.
· Ways to help you remain calm.
· Any fears or anxieties.
· If you want someone (a family member or caregiver) to remain with you.
Information to enter (still working)
· Demographic Information:
· My Full Name, My Nickname, My Birthdate
· Communication Preference:
· How do I communicate? Commonly used language, terms or phrases I say and what they mean, Go to phrases I use and what they mean
· Top things to know about you:
· My favorite things (people, foods, clothing, TV/movies, music, hobbies, high interest topics, etc.), Things I don’t like (certain people, being touched, weather, sounds, words/phrases, babies, color yellow, clothing, etc.), Things I’m afraid of, Things that might make me upset, Things that help me calm down (songs, books, movies, items, places to go to calm down, etc., How to introduce me to new people/items/locations etc.
· Important contacts:
· Important Family/Friends Contact Information, Supports Coordinator/Case Manager/Support Staff Contact Information
· Medical information about yourself:
· Primary Care Doctor Contact Information, Psychiatrist/Specialist Contact Information, Medications/Dosages Being Taken/What are they for
Tips for ER Staff
Real-life strategy to reach your goals.
Emergency rooms should tailor care for individuals with Autism Spectrum Disorder (ASD) by understanding their unique communication, sensory, and medical needs. The ACT for Autism framework helps emergency staff provide effective, patient-centered care for individuals with ASD.
It’s important to recognize that ASD or “Autism” is a spectrum disorder, meaning no two individuals with ASD are the same. Symptoms can depend on age and development. Their responses to sensory stimuli can differ significantly. Co-occurring conditions may appear or become more evident as the individual ages.
Research shows that individuals with Autism visit emergency rooms more frequently than their neurotypical peers, often due to a combination of physical and psychiatric conditions. For example, children with Autism are nine times more likely to visit the ER for psychiatric issues, such as disruptive behavior, physical aggression, and self-harm1. Additionally, common reasons for ER visits include seizures, gastrointestinal issues, injuries, and respiratory problems.
Communication differences may include;
· Echolalia: Repetition of others’ words. Communicate with someone familiar with the individual to understand their use of echolalia.
· Verbal Abilities: Some may be highly verbal, others nonverbal.
· Nonverbal Communication: May use less eye contact, facial expressions, and body language.
· Pain Expression: Might not express pain typically; may become quiet, frustrated, or seek sensory inputs instead of saying “ouch” or crying.
· Speech Patterns: May have monotone voice, unusual pitch, or rhythm. Echolalia is common.
· Literal Interpretation: Often interpret language literally, leading to misunderstandings of idioms, jokes, or sarcasm.
· Direct Communication: Prefer clear, direct communication, avoiding small talk.
· Special Interests: Conversations may focus on specific interests, sharing extensive knowledge on particular topics.
Learning differences:
· Visual representations may help, but some individuals with ASD may not respond to the Wong-Baker Faces Pain Rating Scale due to difficulty reading facial expressions.
· Individuals with Autism may need more time to process information. This can affect their ability to respond quickly in conversations or to new instructions.
· Routine and Predictability: Many individuals with Autism thrive on routine and predictability. Sudden changes or unexpected events can be distressing, so explaining procedures step-by-step can help reduce anxiety.
Sensory differences:
· Many individuals with Autism have either a heightened or reduced tolerance for pain and may not feel typical sensations of heat or cold. This information and any other unique needs should be obtained from medical records or caregivers. Sensory issues could affect their treatment. For example, tactile hypersensitivity may prevent the use of adhesive products, auditory sensitivity may necessitate avoiding sirens, and visual sensitivities may cause reactions to fluorescent lighting commonly found in hospitals. Some individuals may resist being in a reclined position.
The Autism Society Inland Empire supports the “ACT for Autism” framework for emergency department staff was developed by healthcare professionals and Autism experts to improve the care and support provided to Autistic patients in emergency settings. Feel free to ask if you have any specific concerns or need further assistance!
ACT Framework for Autism in Emergency Departments
1. Assess:
Prepare the Environment.
· Have patient avoid noisy, crowded waiting rooms. Use a quiet room for initial assessment and registration if possible.
· Use a quiet exam room.
· Minimize sensory stimuli (reduce clutter, loud noises, and bright lights).
· Limit the number of staff present.
· Determine Communication Preferences.
· Ask the best way to approach and communicate with the patient.
· Gather information from both the patient and their caregiver.
· Presume the person’s competence. If they cannot speak, this does not mean they will not understand and comprehend what you say. Adjust your language level as necessary.
2. Communicate:
Approach:
· Approach slowly and calmly, maintaining some distance.
· Establish rapport, even in urgent situations.
· Speak in a quiet, calm voice. Use the patient’s first name and assure them you are there to help.
· Use calming items like stickers or sensory fidgets.
Be aware that individuals with Autism may become fixated on an object or have the need to perform self-stimulating activities or body movements; do not interrupt
unless necessary. This may be a way for the person to calm down and self-regulate sensory needs.
· Be aware that individuals with Autism may have a fight or flight response or be self-injurious, especially if anxious.
Interaction:
· Do not assume that nonverbal patients cannot understand. If they cannot speak, make sure individuals have a method of communication that is familiar to them, such as a communication device, paper and pen, picture symbols, etc.
· Speak in simple phrases, not in medical terminology.
· Use age-appropriate phrases during the initial assessment process. If a person cannot understand, terms may need to be changed.
· Understand Atypical Responses: Communicate before touching. Recognize that pain may be expressed differently and that some individuals may have a higher or lower pain threshold. Explain procedures before performing them.
· Ask simple yes/no questions and avoid complex queries.
· Allow extra time for the patient to process and respond.
· Explain First: Describe what will happen before any actions or changes occur to reduce anxiety.
3. Treat:
Understand your patient’s baseline.
This is the usual way a patient acts, feels, or looks. For minimally verbal individuals, caregivers might note they are not acting like themselves. Any deviation from this baseline could indicate a new healthcare need. Consider changes in:
• Appearance
• Mood
• Movement
• Eating habits
• Sleep patterns
• Social interactions
Expect the Unexpected – both socially and medically.
• PICA tendencies
• Might be on alternative therapies (e.g., gluten/casein-free diets, chelation) which may lead to constipation
• May lack routine immunizations.
• Fatal Five: Be aware of the five common health conditions linked to preventable deaths in individuals with intellectual and developmental disabilities (IDD):
• Aspiration
• Constipation
• Dehydration
• Seizures
• Sepsis
Additional Support.
· Allow what will make the individual feel more secure or calm whenever possible. If transporting or relocation is needed, allow a care provider to come along.
· Show materials beforehand and let the patient touch them if possible, or model interventions on the caregiver.
This framework was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT) and funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.
Research indicates that individuals with Autism visit emergency rooms (ER) more frequently than their neurotypical peers, often due to a combination of physical and psychiatric conditions. Common reasons include:
1. Behavioral and Psychiatric Issues: Many ER visits are driven by psychiatric conditions such as anxiety, depression, and disruptive behaviors. Children with Autism are nine times more likely to visit the ER for psychiatric issues compared to children without Autism
2. Self-Harm and Aggression: Older children and adolescents with Autism often present to the ER for self-harm and aggressive behaviors. These visits are more common among those with co-occurring conditions like ADHD.
3. Seizures: Epilepsy is prevalent among individuals with Autism, leading to frequent ER visits for seizure management
4. Gastrointestinal Issues: GI problems such as constipation, diarrhea, and abdominal pain are common in individuals with Autism, prompting ER visits for acute management
5. Injuries: Due to sensory processing issues and difficulties with motor coordination, individuals with Autism may be more prone to accidents and injuries, resulting in ER visits
6. Respiratory Issues: Conditions like asthma and other respiratory problems can also lead to ER visits, especially if the individual has difficulty communicating their symptoms
Additional resources:
– Fatal Five for IDD – relias.com/blog/fatal-five-overview
