Autism and mental health in a pandemic


April is Autism Awareness Month, which you knew unless you’ve spent the last decade under a rock.

There’s a side of autism that you don’t see if you don’t live with/teach/support an autistic person. It’s often referred to as the dark side of autism and it manifests itself in violence and mental health emergencies. You talk about this only to others who have had the same experience, and try to hide it from your extended family and neighbors.

The pandemic has completely upended our routine and knowing, mostly, how every day will go. Until last month our routine was: get up, have coffee, dad leaves for work, son and I walk the dogs. After that, it depended on the day. Monday was usually our grocery store/Costco run day. Tuesday, I worked for a few hours, Wednesday was my long day at work (4 hrs.), Thursday was his therapist, and Friday was an open day to maybe do something special. On March 16th that all changed. I moved our daughter and her cats home from NYC where she is a college student, Dad’s government job went to teleworking, we cancelled a much anticipated trip to see family in Iowa – he loves going to visit the small town they live in (my sister, who also lives there, laughed that he’s probably the only person on the planet that loves going there on vacation) – and the news just kept getting worse. When the routine is off for more than a week, things will eventually go off the rails.

A couple of weeks ago they did just that. He had what we call an autistic meltdown; the authorities call it a mental health crisis. When he was younger – smaller than us and easy to physically contain – it wasn’t such an issue. He’s now 6’2” and weighs in around 245. Now when he has meltdowns, we often have to call the police. He’s quite capable of harming himself or us.

In isolation the events that led up to having to call the police would have been manageable – difficult, but manageable – but when combined with the stress of the rapid changes with COVID-19, there was little way to avoid it. Earlier that week, after a technical issue while trying to edit his essay test for his online history class while using the school’s portal, I accidentally deleted the entire 400+ word paper. An hour-plus of writing about race in the early days of the American Colonies was gone. He was really worked up, didn’t threaten physical violence, but called me an old geezer, among other things, and was refusing to calm down. His instructor was able to reset the exam for him the next day and this time we worked together on it in a Word document that he copied to the platform. He was still really worked up about class that night, needing to catch up on missed homework, the virus, and was thinking about trying a new nerve block treatment that helps with severe anxiety – my son is almost phobic of needles.

All of it boiled over when my husband tried to talk to him about the treatment. Our son started with verbal threats to us that escalated to actually trying to hurt us and then threaten to kill himself. I had to call 9-1-1; again, this is not the first time we’ve had to call. It’s been a while since we’ve had to, but it’s horrific to have to call because your child is having mental crisis.

We’ve been fortunate that we usually get at least one officer that knows us/has responded to a call at our house before. This time we got two new officers, not anyone at all familiar with the situation. On two previous calls the police have had to issue an Emergency Custody Order and taken my son in against his will for psych help. Given the amount of threats he was lobbing at the police and the attempts to hurt my husband that is what should have been done this time. One of the officers told me almost immediately that they probably weren’t going to take him in because he would be in the ER with COVID-19 patients and he would have to do a mandatory 14-day complete quarantine. It took awhile, but they eventually got my son calmed down. Even though my husband and I wanted him taken in, the authorities refused because our mental health system requires visits to the ER before you see any emergency mental health specialist even during a pandemic.

I’m not sure at what point they would consider someone enough of a threat to take them in. The other day he was talking about wanting to end his life. I didn’t call because of how unsure I was of them actually doing something to help him, and he was schedule for a telemedicine appointment with his therapist. He seemed better the next day, but what about the next time? At the moment the pandemic has people talking about their mental health in terms of being isolated, but that’s mostly people without mental health issues. What about the people that have diagnosed issues? At what point do authorities decide that you’re enough of a risk to yourself or others that possibly being exposed is the lesser of the two evils?

Will we learn or do anything to fix our mental health care when this is over? Or will this get swept aside like many mental health issues do? How many people will die, not because they contracted COVID-19, but because they were told they couldn’t get emergency mental health care because they might be exposed to COVID-19?

Here’s a crazy thought: maybe we shouldn’t be funneling people going through mental health crises through the regular medical ER, even when there isn’t a pandemic. Having sat in the ER for hours waiting to see the ER doc, then waiting for the county mental health people to show up, and waiting for the on-call specialists, I can tell you the system isn’t efficient. It can take 12+ hours for them to make a decision as to whether or not to admit someone and an eternity to find a bed. In VA the search radius is huge, like several hours from your current location huge.

It’s a system that needs fixing, but how and who do you go to to even start to make a difference?

Categories: Health

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