Planning to go to the emergency department sounds like an oxymoron but those who care for individuals with autism know you can never plan too thoroughly or too often! These caretakers not only to expect the unexpected but have studied each facet of the unexpected, created a step by step schedule for the unexpected, and practiced how to react to the unexpected with their children. If you are one of these ultra-prepared guardians looking for advice on how to bring an individual with autism to the emergency department, you’ve come to the right place!
We spoke with Dr. Marianne Haughey, an emergency medicine physician and aunt to an individual with autism, to find out some ways to best prepare your child for the seemingly chaotic and undoubtedly stressful environment of an emergency department.
According to Dr. Haughey, parents and guardians should take a few steps to make sure they are prepared for a visit the emergency department:
- Check whether your child qualifies as a pediatric or adult patient. The cut off is usually 18 or 21, depending on the hospital. The pediatric and adult emergency departments can be very different and can change the way you prepare your child for the experience.
- If your child has any medical allergies or atypical reactions to medications, make sure you are aware of them and are able to communicate them to doctors and nurses.
- Parents should be easily reachable, if not present. An easy way to ensure this is with a medical bracelet, if your child can tolerate one.
- Make sure you are able to communicate clearly with the doctors and nurses about your child’s diagnosis and abilities. Each individual with autism is unique and you should be able to be your child’s advocate to medical personnel. Your first contact in the emergency department, the triage nurse, should be informed about your child’s diagnosis right away so he or she can best advocate or your child inside the department.
- Patience is key. Waiting is a big part of getting medical care in the emergency department so both you and your child should be prepared to flex your patience muscles.
If your child needs medical attention in the emergency department there are a variety of things they will be exposed to and need to comply with. A majority of people in the emergency department will go through a series of exams that may seem basic and non-invasive but, for an individual with autism, they can be much more difficult. Dr. Haughey notes that if you know that your child is sensitive to:
- Physical contact
- A lot of people
- Being restricted to one room or area
- Emotional Frustration
- Disruption of routine
Then be aware that these stimuli will most likely be present in an emergency department setting and child should be as prepared as possible for these disruptions. Things like physical exams, IVs, and blood work are often crucial to getting your child the help he or she needs so parents or guardians should have ways of making the child comfortable enough to get through them.
Some things that Dr. Haughey suggests bringing to the emergency department, if you can, are:
- Preferred comfort items
- Pajamas from home
- Socks/Slippers from home
These items may help your child remain calm while the doctors and nurses are treating him or her but also while you are waiting to be seen. Waiting in the emergency department can be an obstacle that is easily overlooked but is one that care givers of individuals with autism must keep in mind. Depending on the severity of one’s injury, patients can spend hours in the waiting room so objects or activities that will keep your child distracted or busy are very good things to have.
As I am sure caretakers of children with autism are well aware, sometimes, despite the best efforts, meltdowns are inevitable. If your child does have a meltdown in the emergency department Dr. Haughey suggests a few things to keep in mind:
- Communication with your provider is key to assess whether or not your child needs to stay in the emergency department despite the meltdown.
- A mild meltdown may be eased with distractions or comfort items.
- If a meltdown occurs while doctors or nurses are trying to administer care, a difficult cost-benefit analysis must be done.
- Sometimes, depending on the severity of the injury, care has to be given despite a meltdown.
- Keep in mind that doctors and nurses understand the stress of the situation and are willing to work with you to ensure your child’s wellbeing.
While most of the tips Dr. Haughey mentioned are for children who are coming to the emergency department with an adult it is also important to be aware of the possibility that an individual with autism may eventually go to the emergency department by him or herself. To prepare an individual with autism for a solo emergency department visit:
- Make sure he or she has a way to communicate that they have autism whether that is verbally, with a card, or a medical bracelet.
- If the individual is able to do so, help them explain relevant aspects of their unique diagnosis so that he or she can begin to advocate for him or herself in a medical setting.
- Have a frank conversation with the individual to explain to them exactly what may happen. Using words like “needle” and “blood” will help to decrease the number of surprises that an individual may face in the emergency department.
Thinking about your child being in pain and needing serious medical attention isn’t something any parent wants to imagine but preparing yourself and your child for that possibility can be an important way to help him or her. An already stressful situation is only made worse if your child is surrounded by a world of new stimuli. The main takeaway from Dr. Haughey’s advice is communication. During an emergency, you may not always be able to bring all of the items or fully prepare your child for an emergency department setting but the ability to communicate your child’s needs to all medical personnel can’t be left at home.