When it comes to the ways the medical system is failing the autism community, there is an important issue I have to address. We parents all agree and understand that due to sensory issues, some of our kids feel and react to pain much differently then we would expect.
My son Logan, for instance, has an incredibly high pain threshold and shows no discomfort with extremely hot and/cold temperatures. For example, he stepped on wooden toothpick, didn’t flinch, and literally pulled it out of his foot slowly, more in fascination than in pain. Even in below zero temps he will wear shorts and refuse a coat.
Over the years I’ve learned that his meltdowns, or more specifically when he becomes aggressive towards me, are his only way of conveying he is in pain. It's either that, or expressions of anger and frustration.
Those behaviors are normal to me at this point. They can be extremely aggressive and thankfully if I’m alone during these times, I can usually cope by talking calmly. In the worst case scenario, I leave the room and usually just go in the bathroom and lock the door. It doesn’t last long at all and he’s never come to the door when I leave. Sometimes giving him space is all he needs.
The last place anyone wants to be right now is sitting in an emergency room, but unfortunately sometimes there’s no other option.
At the beginning of the COVID-19 pandemic I had been sick for weeks, had zero energy, symptoms of a cold and just felt like overall crap! As a single mom, I rarely find or take time for me, but I knew I had to be seen. I was having a hard time taking a deep breath and couldn’t even yawn. I just couldn’t catch my breath and was starting to “freak out” a little.
I called our local hospital and explained my symptoms but more importantly the fact that I would have to bring my 18-year old autistic son with me, so sitting and waiting wouldn’t be possible. They suggested I come in around 2 or 3 a.m. as it would more then likely be very slow. It was perfect! My son rarely sleeps anymore, so we’re almost always up at that hour.
Overall they got us in quickly, put us in an exam room with a door, and the staff was being really great helping to keep him occupied.
The doctor however, took a while... (I get it) and my son, for whatever reason, started getting very stressed and just wanted out. Right this minute! Now! He wasn't playing around. I was hooked up to the blood pressure and pulse oxygen machine, and out of nowhere he bolted out of the exam room.
I ripped off the cuff and finger monitor and chased after him down the hall. While following him, I saw three security guards and a police officer all running towards him, (he was on his way out a side door to the parking lot, likely back to our car).
Afraid of what they might do when they caught him and knowing that this chase would only escalate his anxiety, I yelled to them that, “I’ve got him! He’s autistic, please stop, I’ve got him!!”
Given it was the middle of the night on a weekend, a majority of the patients in the ER were ... let’s just say, “pretty rough” and I knew that security thought that had done something wrong, or that he was on drugs. He’s my baby but all they see is this huge, 6’4” guy running and refusing to follow their commands to stop.
Thankfully, I was able to get to him first and the officers backed off. I talked calmly to him and explained that we just needed to get medicine for Mom and that we would leave right after, while also pointing to the officers and explaining that he can’t do this in a hospital and told him to apologize. I explained to the officers his diagnosis and that bolting off was just a part of it.
He apologized, as asked, but we didn’t get much reaction from the officers. I wondered if maybe they hadn’t heard me when I was explaining his diagnosis? They didn’t say much and as I got him back in to the room, trying my best to calm him down, the guards positioned themselves right in front of the door. As we sat down, all we could see was four uniforms standing with their arms crossed staring at us while guarding our door.
Even I felt uncomfortable with this so I can only imagine how Logan felt. Why were they doing this?! I explained his autism. I told them I was him mom and could handle it. Why are they making us feel like criminals? He didn’t hurt anyone or break anything, he just ran out.
With all the eyes on us, his behaviors escalated, like I knew they would, and now I started to feel panic. Security didn't seem to understand his autism and it felt like they were just waiting for him to do something. I moved myself away from the window so they couldn’t see Logan, who was at this point “struggling,” to put it mildly. When the doctor arrived Logan was DONE!
Being a nurse, I knew what we had to do... over the shouting and flailing, I quickly ran down my list of symptoms, dates of onset and knew that the doctor would want to perform a chest X-ray, but the time for that had passed. The doctor could clearly see we just had to get out of there and prescribed an inhaler, steroids and antibiotics. We were on our way, with three security guards following us all the way to the car. It honestly felt awful.
Since then, we’ve had to visit two different ER’s, but this time for Logan. We had the exact same interactions with security at both hospitals. At the first hospital, he ran to the ER restroom and was having vocal tics. My explanation didn't matter and they surrounded our room, staring at us with arms crossed. It felt like deja vu. Thankfully, the officers at the second ER must have had other issues to deal with because although we saw them they didn’t stick around, which made for a much easier visit for everyone.
I’ve said the medical system is failing autistic adults and I still stand by this. Training, understanding and awareness need to be spread throughout hospitals and healthcare facilities. I’m actually shocked that it hasn’t happened yet, but I will do everything in my power to implement these changes. The last thing we need is for parents and caregivers to start thinking twice before trying to get care for their loved ones. No one should be afraid to get medical treatment.❤️😷