Four years ago I had the terrible experience of taking my son, Sebastian, for an extended hospital stay. The day was like any other in upstate NY, snowy, cold, and we were rugged up in layers of clothes to stay warm. Sebastian has always had a great sense of play but this day he seemed to be limping and was somewhat muted.
We’d known he was having problems with his knee for a couple of days, as well as having non-specific fevers and rashes. His pediatrician was suspicious of Juvenile Rheumatoid Arthritis, a condition that takes, on average, nearly a year to diagnose by highly-trained specialists, most of whom had scant experience of autism spectrum disorders, and little training on how to deal with children with that condition.
In a perverse twist of fate, children like Sebastian with autism spectrum disorder (ASD) are 20% more likely to be hospitalized than their peers, yet the hospitals where they will be treated are not always prepared to accept them. Dr. Chad Malone, who has provided anesthesiology services to children with ASD, and Colin Rhodes, healthcare IT expert and parent of an ASD child, have joined forces in an attempt to identify some tips for parents who face this most complicated time in their life.
Choosing a supportive hospital is crucial
In today’s world it is important to remember that we have many choices about who will provide medical care for our children. As parents, we have the uneasy responsibility of choosing institutions, often based on the advice of our children’s primary care or specialist providers. Ideally, your child’s medical professional is an expert in ASD and has admitted their patients to local area hospitals, thus allowing them to see firsthand the quality of care provided. In practice, this is not always the case, and the parent may have to play a more active role.
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Some hospitals have provided extensive training for staff in how to manage children with ASD, and have a proud track record on which to build. Others have played a part in horror stories where children have been restrained in straps against their will, or physically injured, for behaviors that could easily have been managed had appropriate training been provided. It is our belief that while abuse does exist, most medical professionals are trying hard and do have the patient’s best interest at heart, but their skills date back to a previous era and have never been updated with modern thinking.
In the case of children who will be admitted through the emergency department, the parent has little time to make a choice, and must rely on whatever information they can gather. In rural areas the situation is particularly tricky. There may only be one hospital in town, and in such cases the choice is made for you. The best approach may be to wait and see, remembering that you have the right to a medical transfer if you believe you are not getting adequate care, or if you believe the hospital has little understanding of your child’s condition. Unfortunately, this may result in care being provided a long way from home, and only you can make the decision as to whether the benefit outweighs the cost.
The ideal scenario is that the need for hospitalization is determined in advance. Before you blithely accept the recommendation of the treating medical professional, take the time to familiarize yourself with the hospitals in your local area. We recommend calling their child life departments and talking to them about how they manage children with ASD, and most importantly, how they work with parents to incorporate strategies from home and school that are proven to work in complex situations. If your treating provider cannot admit to a hospital that meets your needs, get a second opinion from one that can. Chances are your child will spend very little time talking to the doctor, but will spend significant time interacting with the staff in the hospital, and their ability to accommodate will have a great impact on the quality of care you receive.
Ask for a single room
Children with ASD are often particular about their space, and it’s important to talk to your insurance carrier about the need for a single person room. Be sure to ask what supporting documentation will be required to support your claim. There is absolutely no guarantee that they will pay for this additional cost, and your next best bet would be to talk to the hospital about the possibility of a reduced rate based upon the possibly of your child having more behavioral problems if they are left in a shared room. Unfortunately, in many cases it’s likely that you will have to cover this cost out of your own pocket.
Taking blood with less stress
When you’ve decided on a hospital, you will normally be asked to participate in an intake procedure involving vitals and a preliminary bank of tests. In many cases, blood draws will be required, and while most children hate needles, autistic children may become combative or non-compliant if inappropriate techniques are used. Unfortunately, most phlebotomists seem to be unaware of standard protocols for children with ASD, and downloading and printing a copy of the procedures written by the Autism Speaks Society to take with you is an excellent idea. We also recommend insisting on the presence of child life specialists until it is proven that your child can tolerate this procedure.
Bring your own records
Parents should also take the time to create a detailed summary of the child’s medical needs. Start with a list of medications, the dosages, and the contact information for the providers who prescribed them, then write a short description of how your child communicates, a list of any sensory processing issues, dietary issues, triggers, and techniques used to help stabilize difficult situations. In most cases you will probably be able to get this onto a single page of paper that you can make multiple copies of, and hand out to any medical professional who was involved in the treatment of your child. Yes, this information should be inside the electronic medical record, but mistakes happen frequently and having a paper copy handy is just a sensible precaution.
Many of us now have cell phones with a wide variety of apps to help manage our medical data. We find CareSync to be particularly effective, because it allows you to keep copies of all your child’s records in one place, both as PDF copies, and as summaries. It’s easy to use, convenient, and one of the authors has used it for over two years to manage his ASD child’s records. Having documents on hand that the medical providers need, but cannot find, is a wonderful safety net.
Familiarize your child with the doctor
Children often benefit from taking home a photo of their treating physician in scrubs, so they have a chance to familiarize themselves with their face and clothing ahead of time. We also recommend asking your physician for some samples of harmless medical items such as gloves, and breathing masks, so they can play with them in advance and minimize the sensory impact.
Don’t leave unless you have to
Before your child is admitted make sure that you have arranged for a member of the family, or well-known person to your child, to be present in their room 24 hours a day. Children who are frightened often become confused, then combative, and the situation can easily get out of hand. There will be some situations that simply don’t allow for this, and providing a phone number that the child can call at all times will be less effective, but may have to suffice.
Easing the transition – Getting past the lobby
When the big day finally comes, both the parent and the child will probably be highly stressed, often leading to potentially explosive situations. Have a parent or a relative come around to help you deal with the disruption to routine prior to leaving for the hospital. In many cases the child life department will agree to meet you in the lobby of the hospital, to help you through the many smells, bright lights, and the sheer press of humanity that lies between you and the hospital bed. This simple act of improving the initial experience for the child may have an enormous impact on the overall stay.
During his residency, Dr. Malone would often meet with child life in the lobby and assist with the transition to the patient’s room, thus ensuring a strong connection was made early in the hospital visit.
On the ward – making things like home
Once you have arrived on the ward have the child life specialist introduce your child to the nursing staff and become familiar with the room. Take the time to settle in before you allow too many people into the room, and if necessary put a “do not disturb” sign on the door. If your child has particular scents that they are familiar with, consider using essential oils to replicate these smells, possibly even trying them out at home for a week or so in advance of the hospital visit.
If an IV has to be started, ask if this can be done in a procedure room, so that the child does not connect the room with what are potentially distressing procedures. IVs should be placed by very experienced staff in the presence of the child life specialist, many of whom like to leave the child with toy IV bags and teddy bears (or the equivalent for older children) to play with ahead of time.
While pain control is not often used during the placement of IVs, it may be appropriate for children with ASD. There are multiple options to consider, including aerosol or injectable numbing medication and forms of oral medication that can treat anxiety and pain. Getting the needle in by no means guarantees that it will stay there, but you can improve your odds if there is minimal stress and pain.
When performing anesthesia, Dr. Malone recommends “one breath induction,” where one dose of gas is given over four seconds so the child goes to sleep quickly, prior to placing IVs. Ask your doctor if they can provide this service, as they are often happy to do so.
Dealing with meltdowns and tantrums
There’s a good chance that your child will melt down on multiple occasions during their hospital stay. You can minimize this by decreasing sensory input through the use of headphones (if appropriate), closing the door, and asking that only one or two people enter the room at a time. Some institutions like to bring students around on rounds, and while this is an important part of the medical education, it can set off undesirable behaviors. If this is the case it may be advisable to ask that the team stays outside the room. While nurses do like continuous vitals, it may not be possible to do that with your child, and they may have to make do with spot checks.
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Managing Autism Meltdowns, Tantrums and Aggression
It’s likely that parents and the healthcare team have very different definitions of what constitutes disruptive behavior, and in these situations, the parents who live day in and day out with the child, are the experts in how to calm things down. Healthcare providers should not interrupt self-stimulatory activity from children, and should turn to the parent for advice, before they insert themselves into the fray. Every child with ASD is different, has unique triggers, and will respond in their own particular way to a given situation. Regardless of how much experience a provider has dealing with children with ASD, they must develop experience of working with your child.
Pain is different for ASD kids
Getting information about pain can be very difficult. For non-verbal children strategies such as “smiley” and “frowny” faces can be used, but in many cases they may choose not to participate, resulting in a serious trigger that may lead to a behavioral incident. Healthcare providers need to use their best judgment, but may have to over-treat pain, based on their, and the parents, view of the child’s response. It is a basic human right to have pain control during medical procedures, and parents must act as children’s advocates to ensure this is provided.
We hope this helped
The reality is that treating patients with autism typically requires more time and education from medical staff. Autism rates are on the rise, and while hospitals need to gain a better appreciation of how to work with our unique, sometimes difficult, but always precious children, the parent retains an important role in ensuring that their child is appropriately cared for. It is our hope that in this article we’ve given you some useful advice when a visit to hospital is required.
This article was featured in Issue 40 – Conquering Stress