Thursday, 12 January 2012

Patients with Aspergers / autism

I have always the experiences of patients with Aspergers and autism of the hospital environment and also how nurses treat them.

During my training we has a 30 minute session, adult orientated on how treatment of adults with special education needs may differ from ‘the norm’ [but what is normal would be my question anyway].  This lecture also didn’t mention autism or Asperger’s syndrome at all and seemed to focus more mainly adult conditions such as Dementia and Alzimersers.   So nursing education in this respect was a bit poor.  My university group did however have a lecture on Autism; presented by myself because of the experiences I had had the two years prior as a student. So hopefully they will have taken something from this.

Being admitted to hospital, especially an unplanned admission is a stressful and difficult time for anyone. However for people with Asperger’s or autism the experience can turn quickly into an ordeal.  Routine is suddenly squashed and the safety and comfort of home and family. Even the small things that wouldn’t normally be thought of can have a great impact, the change in noise, the constant alarms, the lights, the horrible Florescent lights. The change in bedding, the change in food, the change in the people.  The change in what’s ‘normal’.  

I have had several experiences over the years of both nursing patients with AS and also being the patient myself.    The most notable thing I have noted is that hospitals are not equipped to completely care for children with autism or Asperger’s and there’s several steps nurses could do to help this journey go more smoothly. The main one being


I’m 99.9% sure that parents don’t mind and properly would prefer to be asked by the nurses what can be done to help rather than be left to try and adapt to hospital routine.  Nursing is about individualised care as everyone has individualised needs.  Therefore if there’s any nurses out there. Please ask what you can do, don’t just assume anything! Stuck fast rules can often be bent for good reasons. My hospital has a rule that all TV’s get turned off at 9.30pm, which are controlled centrally from the nurse’s station. Well imagine your frustration when most TV programmes that start at 9 don’t actually finish to ten and you can’t watch the end. Now image if part of the as routine is that they always watch the 10 o clock news before going to bed.  To A “normal person” this is a mild inconvenience but to someone with AS it could be devastating.  

Nurses also need to be aware of sensory perception in people with AS/Autism.  In hospitals there’s such a thing as a magic curtain. When a patient can’t go into cubicle privacy is given by closing the curtain and magically everything outside the curtain gets blocked out..  Well it is easy to forget that this is not the case.  Wherever possible it might be better to provide cubicles for people with AS/Autism due to the amount of noise on a ward, constant alarms and chatter a cubicle offers some time away from this, however these are not always available as patients with contagious conditions or at high risk of catching infections need to be isolated to protect other patients or themselves.  Light is also a problem, on ICU where I work we don’t have “Day” & “Night” times, i.e. the place is almost at a constant brightness, it is also hospital policy that every bed space has a light on even at night as you have to be-able to see your patients at all times.  Therefore wards also have lights on expect they are dimmed for the night.  So it needs to be thought about how they sleep at night. Do they need complete darkness or do they need a certain night light, I need complete darkness so take those travel eye cover things as any light at all keeps me awake.

It is encouraged that parents bring in things with them to aid in their child’s stay in hospital. I always remember trying to find spaghetti at 3am as its all this patient from a planned admission would eat and was screaming from hunger, managing to get the kitchen open to find some and getting the spaghetti hoops and being quite pleased with my-self to find the child would only eat straight spaghetti….. which the hospital doesn’t stock.  Teddy’s, cloths, DVD’s toys, games, are all very welcome to come in with the child for their stay and are actively encouraged and sometimes its just the little things that can make a difference.
what are your experiences of stays or appointments in hospitals and the health care system. Also have any you any suggestions on how care provision could be improved.

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