The hospital environment is often overwhelming for individuals on the spectrum. The sounds and smells are all completely different from home, and it is difficult to control the routine. A lack of staff knowledge about autism can add to this stress, resulting in a terrifying experience for autistic children and their parents. Although it’s impossible to control everything and plan for every potential issue when preparing your autistic child for a hospital stay, the guidelines in this article are a good foundation for ensuring your child experiences minimal stress.
Hospital Stays for Children on the Spectrum are Common
Children on the autism spectrum are more likely to use hospital services and remain hospitalized for longer periods of time than neurotypical children. This can be due to other conditions the individuals have, such as genetic disorders, severe allergies, or GI issues. Longer hospital stays may be the result of the staff’s misunderstand of autism and how best to manage medical conditions for people on the spectrum. Whether you are planning for a scheduled procedure or preparing for an unknown potential stay in the future, the guidelines below can help reduce your child’s anxiety and give you confidence in supporting your child through this transition.
Research Hospitals and Their Autism Accommodations Ahead of Time
If possible, try to do as much research as you can prior to a hospital stay. Not every hospital will offer the same services and treat you and your child in the same way. One way to screen doctors, medical offices, and hospitals is to ask for referrals from friends who have children on the spectrum. If you can’t take advantage of this option, then calling hospitals ahead to ask questions might be helpful. You might ask questions about the availability of private rooms. Also ask if there are any procedures for communicating special needs regarding accommodations prior to a stay. Most Child Life programs will be able to assist with making patients comfortable, but asking about the staff’s knowledge and experience with autism will help you understand what they are capable of offering you and your child. Some hospitals may have teams of people trained with how to interact with patients on the spectrum. They also may have admission protocol that helps them gain information about how to accommodate for these patients, in which case it would be useful for you to know exactly what information you should have readily available, since you may be spending most of your direct attention on caring for the needs of your child when you first arrive.
Whenever possible, try to discuss the medical field in a positive light with your child. Talk about how doctors and nurses help people feel better. Your child may likely already have negative associations with anything medical from past experiences with shots, blood draws, or doctors prescribing yucky medicines they are forced to take. Don’t lie about whether or not something will hurt or taste bad. Try to reduce their anxiety by discussing an upcoming hospital stay or doctor visit and explaining the benefit your child will receive and that people of all ages see doctors frequently to stay healthy.
Prepare Your Child with Social Stories About Hospital Stays
Social stories are proven to help reduce anxiety for children facing upcoming transitions or changes in environment. There are several stories available online that would help your child prepare for an encounter with medical professionals. I’ve listed some in the “Resources” section at the end of this article. In my experience, I have found that personalizing these stories with pictures of my son is most helpful in making them real. If you are going to make your own, you could ask your hospital or doctors office if you could come in and take pictures to show your child the areas of the hospital you will go to ahead of time. If this isn’t feasible for you, you may find pictures online of your particular hospital or medical office that you can use. You can also ask for gloves or masks to bring home that your child can play with.
Discuss Pain Levels
Since pain is likely something doctors or nurses will discuss with your child, start talking about this early. Introduce your child to different ways to rate pain. The Wong-Baker faces pain scale or similar models may be helpful. Whatever you use at home, make sure to explain this to the hospital upon admittance so they can incorporate it with their daily care plan.
Make a Book
Making a book with your child’s most important medical records and information about personality or accommodations will prove useful in a variety of different settings, including the hospital. Some apps also collect medical data and make it easily shareable. During a hospital admission, there may be standard forms that staff complete with information about each patient, but having your own written records can help expedite this process. They can take your book and make copies of the pages they need and a nurse, Child Life Specialist, or other staff member can come to you with any additional questions they have. Having these records available allows you to focus more of your attention of caring for your child and less on answering staff questions.
Communicate with Staff
Communicating your child’s needs with hospital staff is critical. Carrying written records or digital files is a great start, but you will need to advocate for your child throughout the entire hospital stay. If your child has especially complicated needs and you are anticipating a long stay, you may want to meet with a multidisciplinary team (primary doctors, nurses, psychologist, therapist, social worker, nutritionist, respiratory therapist, or any other relevant staff). In this meeting, you can advocate for your child’s needs and ensure that all important team members are on board with your child’s care plan. At this time, you can discuss any concerns you have about continuity of care, especially during shift changes.
Make it Like Home
Work with nurses and hospital staff to try and make the hospital room feel a little like home. Address any sensory problems, such as lighting or noises, if possible. Try and maintain as many routines as you can (meal times, for example) and ask for minimal disruptions. Bring any favorite toys or activities, and ask if you can hang something familiar on the walls. Talk to a Child Life Specialist about the resources they have available. Sometimes it may not be necessary to bring the entire arsenal of favorite toys, but it’s also good to be prepared.
Plan for Someone to Stay At All Times
As you are probably already aware, advocating for your child’s needs is an ongoing process. Relaying information upon admission won’t be enough. Your child may need constant support to keep anxiety levels low and ensure the treatment plan is implemented properly. Plan to have a trusted family member or friend stay with your child at all times, if possible. If you have shorter periods of time you know you will be gone, ask Child Life Specialists if they or a hospital volunteer could stay close to help if necessary.
Hospital stays can be tough for children on the spectrum, but time spent in preparation can certainly help reduce anxiety. Next week we’ll examine this topic a little more intimately with Lydia Wayman, an autistic self-advocate, blogger, and public speaker.
Additional Resources Regarding Hospital Stays and Autism
https://www.teacherspayteachers.com/Product/Social-Story-Its-Okay-to-Go-to-the-Hospital-to-Feel-Better-479550– Social Story “It’s Okay to Go to the Hospital to Feel Better.”
http://www.oneplaceforspecialneeds.com/main/library_blood_test.html– Social Story about getting having blood drawn.
http://vkc.mc.vanderbilt.edu/asdbloodwork/– A guide for parents and providers about blood draws and ASD.