Autism and A Trip to the Hospital

It was unexpected.  RJC needed to go to the hospital, and now that she is over 21, I was not sure that the Children's Hospital would accept her.  I could not take the chance that they would turn her away (that would be tantrum material for sure) so we went to the hospital that I knew would treat her. 


My concerns:  First, would they be so crowded that we would be sitting in a waiting room for hours.  Second, would they have anybody there who would understand her autism issues which were bound to crop up.  Third, would they insist on doing things "their" way rather than working with us to make it as much of a comfortable and positive experience for our girl as it could be.  Truth be known, we have had quite a few experiences in the past that made me feel wary of what we were about to face.


Let me start with the end - it was a surprisingly good experience. 


When we first entered the hospital we were told to have a seat and wait for our turn to do an intake.  As RJC and I were there alone at that time (hubby was on the way) I decided to ask the security guard if there were any doctors there that he knew would be comfortable with special needs.  He was very reassuring and explained that there were plenty and I needed to mention this in the intake.  Hubby showed up and we were quickly called over, gave the intake person information, and were sent to sit in another area.  While we were there, the security guard came over and said he went and did some checking around because he could see that I was worried and that there were definitely doctors there who would be able to help her.  I was rather amazed that he would go through the trouble to do that and I totally appreciated it.


Our next call was to give somebody more information.  RJC asked to use her stethoscope which she handed over readily.  She talked with RJC while asking us the ever important insurance questions.  She tried to get information from RJC directly about how she was feeling and when we told her she was not a reliable reporter, she nodded and listened to our answers but still kept RJC in the conversation.  We were then sent to wait.  Again.


RJC got comfortable on a couch, leaning on me and scripting quietly.  Finally we got the call to a room.  A nurse came in and took her blood pressure, then let us know the doctor would be in.  It was a few minutes, then the doctor came in.  He looked incredibly young to me (but don't most people these days...) and he introduced himself with his first name.  RJC put out her hand to shake his, and a connection was made.  He asked her questions and understood quickly when we told him she was not a reliable reporter.  She asked him for his stethoscope and he helped her put it in her ears and let her listen to his heartbeat.  He didn't even blink.  As her symptoms did not easily point to just one obvious diagnosis, he thought a blood test would be helpful.  I was dreading this possibility.  We explained that a blood test could only be done under general anesthesia and what he did NOT do was just as important as what he did do.  He did not get haughty, judgmental, or preachy.  Instead, he said he would discuss this with another doctor and figure out what they could to do.  I was completely shocked and more than relieved.


Waited again.  RJC was getting somewhat agitated at this point and we were singing and making ridiculous sounds to keep her amused.  A second doctor came in.  She also did an exam of RJC, letting her use her stethoscope (do you see a pattern here?) then explained to us that taking into account her needs, they were willing to do what they needed to in order to get a blood sample but that they could also take a less invasive route and do some observation, as she was a young patient and there was not necessarily an imminent reason for doing a more invasive procedure.   She gave her a medication, then sent us home with pages of instructions of what to watch for and when to call.  We were comfortable with that (as comfortable as parents can be in that situation) since all the symptoms were gone and she was pretty much "back to her normal" self.


As to my concerns:  first, though there was quite a bit of waiting and though we were in the hospital for hours, she did very well.  It was probably helpful that we were moved from place to place.  Even though we were moved just to wait around some more, we were moving and that was helpful.  It got a little dicey by the end but we made it.  Second, everyone we came into contact with was very respectful and comfortable.  Nobody ignored her and everybody included her in their communication.  Third, they did not insist on "their" way.  They gave it some thought and came to a conclusion that they thought would work for her.  They reassured us that if we wanted to do something else they were more than willing.  It was an honest to goodness team decision. 


I can't help but to wonder what made the difference between this experience and some past ones we've had that were not very positive.  Is it that there are more people with autism, so professionals are more aware and have more experience?  Is it that the younger doctors have grown up in an environment of inclusion/Best Buddys/Unified Sports, etc. so people with special needs are familiar to them from a younger age?  Whatever it is, it is good.  It is really, really good.


But just in case...I was ready to put up a stink if necessary.  Just sayin'.