Hospital Preparedness Lacking for Children with Autism

Judy Lynn Barranco

Residents of the United States will be facing the peak of flu season (which runs from October through May) in the coming few weeks and it’s likely that a portion of children who get sick will require hospitalization during that time.

Every child is anxious when they have to stay in the hospital, but for a child on the autism spectrum, these stressors can expand exponentially. Like other services in our society, most hospitals are behind-the-curve in dealing with patients who have autism. This lack of preparedness in the medical setting can cause many problems and untold grief for children and families.

Fortunately, some hospitals are facing the problem head-on. The Hospitalist reports of a handful of medical facilities around the country that have autism consultants who are called in to help with arriving patients, providing an array of ideas for both parents and staff. While this is a good start, much more work is needed in this area.

When a child with autism arrives at the hospital, doctors and nurses need to make the child’s life as consistent as possible. Limiting the number of physicians and nurses interacting with them is extremely important. With the proliferation of teaching hospitals, this can often be difficult. ¨Grand Rounds¨ when doctors and their legions of interns crowd into the patient’s room is unduly stressful and should be avoided.  

Regardless of a child’s age, a family member in the room twenty-four hours a day is highly recommended.  I discovered the hard way that many children’s hospitals have twenty-four hour babysitting services, but don’t make it widely known to patients or their families. If you don’t have a family member who can stay with your child around the clock, ask the hospital to provide a companion when you can’t be there. 

Dimming lights, keeping noise levels low, touching children infrequently and letting them know what will be happening next are other ways to limit sensory overload. Doctors should turn off cell phones and pagers and be sure to have enough time to attend to the child.

Involving a child in activities such as wearing the same hat as a surgeon, having them touch and handle a wrist bracelet before putting it on, or being shown medical equipment before it is used can all help counteract the onslaught of foreign experiences. 

From personal experience, I highly recommend that every time a youngster has to contend with a shot or blood work, insist that Emla cream be applied first. Rubbed on the injection site thirty minutes or more in advance, Emla completely numbs the area so that the needle won’t even be felt.

Scary procedures usually done under local anesthesia can be performed under general anesthesia instead. When my son had to have an endoscopy, having him sleep through it spared him both the terror and stress.

If a staff member is speaking in a way that is inadvertently upsetting your child, take them aside and politely coach them. 

Also, don’t presume a medication is appropriate just because the doctor says so. Do your own research. A heartbreaking scenario unfolded in Seattle when a boy with autism was getting a tooth extracted in the dental clinic and died from a patch placed on his arm for pain. He couldn’t tolerate swallowing pills, but the patch carried a black box warning that it was only to be used for cancer patients with a high tolerance for opiates. Although the parents were awarded a multi-million dollar lawsuit settlement, it was no consolation for their grief and loss.

Statistically, your child will eventually find his or her way into the emergency room at some point in the future. In fact, according to the CDC, approximately 200,000 Americans require hospitalization each year from the flu virus alone, with a good portion of those patients being children and the elderly.  These numbers don’t even take into account the myriad of other reasons a child on the autism spectrum may require inpatient care.

Having a loved one in the hospital can be overwhelming, and at times, terrifying.  Don’t wait until it’s too late and don’t assume a hospital will be equipped to handle your child.  Make plans now and have a hospital plan in place so you’ll be fully prepared when that time comes.

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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