Advice for someone who is caring for a patient with ASD. Day #18 NHBPM.
There are kids who live with chronic illness,visible and invisible disabilities. They need more caring, nurturing, protection and much more patience.
Unfortunately my son’s health is not the best. He gets sick a lot, and he had to be hospitalized in ICU several times. We did have good experiences in the hospital, and the best thing I did as a parent is to tell the staff about my son’s autism right away.
Autism is very complex, with many different issues, difficulties that others may not notice, understand. That is why it is crucial to always have a list with a parent/caretaker that explains about behavioral issues, how to avoid and diffuse problems.
The medical staff. doctors, nurses, respiratory therapist, EKG/EEG technicians, lab personal all were aware of Amin’s challenges. They all worked together, asked me question, and followed what I told them in a best of their abilities. There are times when one can not follow through with all the requirements, but still they are able to keep in mind some of the techniques that may help the person with ASD.
My advice would be to all medical professionals, and other caretakers to please listen to the person that is closely involved with the child. Those are the people who can help make anyone perform medical treatments , tests, or anything that maybe necessary for that child.
Furthermore, you will need more patience with these kids, and understand that they do comprehend things, but they have a different view of life , their surroundings and other’s actions. They need predictability, and since they are not on their strict schedule, they feel uneasy, scared and confused at times. One must understand, rushing these children will create not just a complete chaos, but it is a good chance that the child will not get the tests he/she may need nor they will get the appropriate treatment.
Also, medical professionals need to keep in mind, that some of these children can not talk, or if they say words it may not be functional, but they still have feelings. So belittling them in front of parents or other personals will create a very negative feelings for these children, a word can break their heart, or make them angry, depressed, hurt in many ways. Words hurts just as much as physical abuse.
Moreover, when you ask a question, use simple short sentences. Do not complicate the questions, and combine more than one inquire in one sentence. Asking questions that can be answered with “yes “or “No” is the best approach at least until they warm up to the person.
Keep in mind that ASD kids are very visual, so when explaining to them the procedure tests, treatment , you can show them the equipment that will be used, allow them to touch and explore if it is possible. Tell them how it may feel, what is the purpose and perhaps demonstrate it on the parent or other siblings first, so they can see what to expect.
I know that times is money, and we have to rush from one patient to another, but I do not think a few minutes demonstrating what will happen can make you pull overtime., in fact it will save time.
Approaching ASD kids with hostile will create hostility, and that will never have a good ending. Try to be friendly, smile and be very confident.
Ask the parent what reinforcement works , and offer it after the successful treatment. Predict the possibility of reinforcement before the test/ treatment is done. If there is any book about the future treatment show that to the child with pictures so they may see what they are about to experience.
It is a possibility that regardless what the medical professional try to do along with the caretaker ,nothing is being accomplished due to a melt down. In this case after a few tries it should be up to the parents if they want to continue unless it is a life threatening situation. If it is a routine test /treatment one may reschedule for a better time. At that time, use social stories to prepare the child for the future treatment.
Medical professionals need to make sure that all sensory issues are addressed as well, so it will not interfere with the future treatment. My son is very sensitive to the disinfectant that they used in his room. Every time they mopped the floor, cleaned the bathroom he got very anxious and almost unmanageable. I finally after 2 days I realized that is the problem. I simply told the nurse and the doctor. They called housekeeping and they made the arrangement for a different disinfectant. The smell annoyed him a great deal, once it was eliminated he was very cooperative.
Moreover, one should keep in mind, tat some of the ASD kids doesn’t like to be touched. Sometimes, there is no other way to do the exam, or treatment, but if they can limit the touching might be helpful as well.
It is very important to make all these experience a good one, and never leave the child with a negative memories. It takes work, but the end result worth every moment.