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.