My child has autism. She was diagnosed over six years ago. There are 1 in 68 cases of autism among children in the United States. In my state, it is 1 in 44 children are diagnosed with autism.
In my experience as a parent of a child with autism in the great state of New Jersey, the medical community, especially the support staff such as nurses and medical assistants, need training and education in autism. They are clueless.
Last weekend, my daughter refused to get out of bed. She is essentially non-verbal but managed to muster out, “I want doctor.” She was clammy and listless. Her eyes were at half mast as she cried out, “Bye-bye in car. Want doctor.” She had a fever of 102.
I took her to the walk-in urgent care clinic because her pediatrician’s office was closed. The staff treated her kindly and was patient with her. The doctor examined her and said, “It is just a virus.” He was very respectful of her. He showed her the instruments before he examined her. However, he dismissed the severity of her illness. I didn’t want to leave the office without treatment of some sort — she never has a fever! I told him she was not eating. So he did a strep test. Positive. I am happy I advocated.
He prescribed a 10-day dose of liquid, chalky-textured, bubble-gum flavored Amoxicillin. Yuck. My child eats 10 things. Amoxicillin is not on the menu. “But she won’t take medicine.” I was told to “mix it in applesauce”. Bright pink, bubble-gum flavored, chalky-textured Amoxicillin – in APPLESAUCE. Oh, that is right – a child with autism won’t detect that her applesauce has changed. And furthermore, SHE DOES NOT EAT APPLESAUCE! She never has. I do not think she ever will. She has AUTISM. She knows when things are different and she does not like different!
I tried to get her to take the medicine. I begged. I pleaded. I put it in her yogurt shake – Trader Joe’s probiotic yogurt drink. She took one sip and handed it back to me. I tried to force it on her. She threw up. Serves me right.
I called her primary care pediatrician’s office and asked if the doctor could administer a shot. The nurse said, “We don’t do that.”
“But she won’t take her medication and she has autism.” She is getting sicker.”
“Put it in applesauce.”
I tried to appeal to the nurse. I told her that my daughter eats 10 things and I cannot disguise it in her food. She told me that the office couldn’t treat her because she was seen by another doctor. I told her I could send over the records. It has been done before. She flatly said, “Sorry. I don’t know what you are going to do.”
I called the walk-in clinic and begged them to prescribe the antibiotic in a suppository. They did however, the pharmacy was not open. When the pharmacy opened I called and asked if my daughter’s prescription was ready. “No, we have no record of a scrip for your child.” I called the walk-in clinic and the nurse who called the prescription was not there. They had to wait for her. But what about the doctor? They put him on the phone. The first thing he said to me was, “Well, the nurse who called it in isn’t here. We will wait until she gets in.” I said, “Doctor, you can call in prescriptions, can’t you?” He reluctantly admitted that he could call in prescriptions. My husband picked the suppositories up on his way home from work. I read the instructions, “TWICE A DAY FOR 10 DAYS???!!” How am I going to administer a suppository to my sleeping child, who, at best, sleeps four hours a night?
At this point my child was without medication three days after she was diagnosed with strep. She was sicker. She still had a fever of 102. She couldn’t walk because she was so weak. She stopped communicating. Her eyes were glassy and her skin was pale. She had deep circles under her eyes. She could not tell me she was in pain or did not feel well, but it was written all over her face. I took her to the Emergency Room.
The ER doctor knew how to deal with a child with autism. She prescribed an injection of penicillin. My daughter did not flinch when the shot was administered, but was upset about the band-aid. I was told she would be better within a day, hopefully.
The next few days she got progressively worse. High fever, lethargy, clammy skin, gooey eyes. She lay on her bed all day, staring at the wall. We called the pediatrician again and spoke with the same nurse who told me the doctor could not help my child . She left word with the doctor who called us back within minutes She told us she would have two injectable forms of an antibiotic called in to the pharmacy and we were to pick them up and bring them to the office for her to administer. Boom.
Oh, so they DO give injections in the office and she CAN be seen even though she was seen by another doctor.
Maybe it was poor customer service. I don’t know. What I do know is that it is a lack of understanding of children with autism. Doctors are trained to screen patients for autism and refer the children to neurologists or developmental pediatricians. However, support staff are not. I had one medical assistant bark at my child to “Stand up straight on the scale.” Of course, my daughter has severe auditory issues and cannot understand vague things like “stand straight”. The medical assistant yelled, “I SAID stand up STRAIGHT!” I went over and modeled how to stand for my daughter. She took the visual cue and complied. When the medical assistant put the clip on my daughter’s finger to take her blood oxygen level, my child took it off. She snapped, “Keep it on!” I said, “You do not have anything autism-friendly?” The M.A. rolled her eyes. “I have to prick her finger, then.” I said, “Go ahead, she doesn’t feel pain, that will be easy.” And it was. My daughter was not crazy about the band-aid, but that was ok.
I am lucky my child willingly goes to the doctor. Some children with autism will not walk through the doors. My daughter likes the doctor and will tolerate an injection, but light touches bother her. Don’t they understand that? And most medical support staff I have encountered at pediatrician’s offices have a know-it-all, holier-than-thou attitude. So it is difficult to explain to them, “My child doesn’t like the feel of a band-aid or the sensation of the finger clip on her finger.”
With proper training and assessment of a child’s limitations, a doctor’s visit will go very well for kids like my daughter. We work on medical office etiquette with her in school. We teach her how to sit up and let the doctor listen to her heart, look in her ears and take her blood pressure. However, she can’t be generalized. She has sensitivities some other kids, even kids with autism do not have.
And if she can be trained to go to the doctor and participate in the exam, neurotypical medical staff can be trained as well. My child is entitled to respect when she gets medical care. She is also entitled to high-quality health care, as we all are.