Two things we don’t talk about enough are the anxiety that comes with your nonverbal child being sick and the lack of autism training in healthcare providers.
I don’t know when my nonverbal son is sick
When Charlie is sick, we only find out when it becomes glaringly obvious—like a fever or a cough. Charlie has an incredibly high pain tolerance, and when we see that he’s unwell, we know it’s serious. This constant worry gnaws at me: what if he had something like appendicitis? I had mine removed during the pandemic before it burst because I could recognize the symptoms. But a child like Charlie can’t communicate those early signs of pain, and that terrifies me.
Today, I took Charlie to the doctor to figure out why he has a fever and refuses to eat. The doctor saw that his throat was red, so at least we know he has a sore throat. We’re still waiting on the strep, COVID, and flu test results, but it’s most likely just a cold.
Lack of training in nurses when caring for kids with autism who are nonverbal
What truly breaks my heart is the lack of training most nurses and healthcare professionals have regarding nonverbal autism. I explained to the nurse that Charlie is nonverbal and can’t express his feelings. Our conversation went like this:
**Nurse:** What’s going on with Charlie?
**Me:** He has a fever and refuses to eat, but I don’t know what else he’s feeling. He’s nonverbal and unable to communicate pain and feelings.
**Nurse:** Does he have a headache?
**Me:** I don’t know. He can’t tell me…
**Nurse:** Sore throat? Cough?
**Me:** 
I understand they have to ask those routine questions, but it’s frustrating. I feel unheard; probably something Charlie and I have in common. I wish there was more training.
I love our doctor’s office, but the lack of education on severe nonverbal autism is something I’ve noticed everywhere. There’s so much room for improvement. I
1 Comment
T Johns
2024-07-21 at 8:53 PMI can only imagine how much harder it is with a child who is nonverbal. My son is verbal, But it’s hard to call him high functioning. He has a lot of issues that Make trying to live in this world the way it is very difficult , including severe sensory, sensitivities, severe anxiety, extreme rigidity in his thinking and is very prone to meltdowns.. I ended up in the ER with him one night because he had hurt his foot… It was very swollen and bruised and we thought it might be broken. The waiting room was very warm, noisy, bright lights and crowded. He has severe anxiety over Situations like that. They called him back to triage him relatively quickly, but he became very upset when she said he had to go back to the waiting room. He asked how long it would be and her only responses. I don’t know, but you see how many people are out there? They’re all before you. He was being a little loud and crying saying I can’t go back out there. I had already told her that he was struggling in the waiting room due to how crowded and warm it was that he was on the autism spectrum and asked if there was anywhere else that we could sit. She was very unconcerned, not at all friendly and offered no other suggestion. She said if we weren’t in the waiting room when we were called, we would lose our spot. My son continued to cry and was refusing to go back to the waiting room. She said that if he refused to go to the waiting room she would call security to have him removed from the hospital. I was flabbergasted. Another nurse ended up coming in, and I explained the situation to her. She could see that he was very upset and at this point, I also had tears in my eyes. She was not particularly friendly, but she did find a little alcove in a hallway inside the ER that had two chairs in it where we were able to sit and wait until it was his turn to be seen. I find this sort of lack of compassion and lack of understanding, just about everywhere we go. Not only in healthcare, but, it is especially upsetting to see it in healthcare. I get the same thing in public schools in our area as well. There are no appropriate special schools here so we have to Try to deal with public schools. Not easy…. Especially, for my son. At what point does this all change?