It was about 2:00 in the afternoon on a crisp, fall day. I was speeding the backcountry route to my son’s school…Well, I WOULD have been speeding, but I was behind several cars, the first of which was driving at least 10 miles per hour below the speed limit and likely making everyone else just as crazy as I was at that moment. Road rage issues aside, this particular day I had a reason to be in a hurry. I was headed to pick up my boy. His teacher had called to say he was having a meltdown, and they were having trouble calming him – I needed to come right away.
If you’ve heard of autism, you’ve probably also heard of “tantrums” that individuals on the spectrum may have sometimes. I don’t use the word “tantrum” – a tantrum in my mind’s eye is a child throwing himself on the floor, kicking and screaming and carrying on because he didn’t get his way, or a child stomping to her room and shrieking, “I HATE YOU!” before slamming the door. Those are tantrums, and pretty much every kid on the planet has had one of those.
I prefer to use the word “meltdown”. That is, of course, with the understanding that I’m not comparing my son’s emotional state to, say, an ice cream cone melting on a hot day, where the warming molecules begin moving faster, breaking the bonds between them so they slide past each other and become a liquid, gooey mess. No, it’s more like the meltdown of a nuclear power plant, where enriched uranium fuel rods are left uncovered and uncooled, melt into a hot, radioactive gooey mess, subsequently burning through the containment vessel, possibly leading to an explosion and release of hazardous radioactive fallout.
THAT is the meltdown I’m talking about.
And just like in the case of a nuclear reactor, it’s very difficult to reverse my son’s meltdowns and prevent the explosion. Once it’s reached a certain point, we pretty much focus on containment in hopes of minimizing the danger he poses to himself and others.
It hasn’t always been like this. My son was a lot less volatile when he was a toddler lost in his own world. As he grew older and more aware, his anxiety and agitation grew as well. Coming out of his shell exposed him to an overwhelming and frightening world. He was simply not equipped with the necessary tools to process and navigate through it.
Warning signs of future trouble were almost imperceptible at first. Around 4 years old, he started having emotional outbursts that were short-lived and could be easily traced to a trigger – hunger, tiredness, and frustration were common and pretty easy to identify. As the outbursts became more frequent and for a longer duration, the triggers became harder to pinpoint. He might be playing quietly in the yard, then suddenly take off running, screaming and crying as he ran. If we tried to calm him, his anxiety would escalate as he tried to break free.
In the months that followed his agitation increased, especially when he returned to school in the fall just after his 5th birthday. It became harder and harder to calm him and nearly impossible to prevent his meltdowns, since there often seemed to be no antecedent for his emotional state. That doesn’t mean that there WASN’T a cause, only that we couldn’t readily identify it at the moment of his outburst. It could have been anything: an upset stomach, a headache, sensory overload, disliking a task, an upsetting memory, stars out of alignment…you name it. He had no way to tell us what was wrong.
What’s more, he was becoming more aggressive towards me. Sometimes he would seek me out for comfort but then pinch, scratch, and bite me, pulling my hair with both hands, desperately trying to communicate his pain and anxiety.
The International Atomic Energy Agency has a scale for rating nuclear incidents based on the level of danger, from a Level 1 “Anomaly” to a Level 7 “Major Accident”. One day in October, I knew we had moved up our own meltdown scale into a much more dangerous category. I got my son off the bus that day, and we walked slowly up the driveway, his arms wrapped around my arm, his head leaning against me. A whining noise began to build in his throat as we went in through the front door. At the top of the stairs, the whine became a scream. He began jumping up and down, hitting himself on his head with his fists, pulling his hair. I tried to soothe him, but he broke away and ran into the living room where he threw himself down, banging his head repeatedly against the carpeted floor.
These are considered “Self-Injurious Behaviors”. It was time for professional help.
I took him to a psychiatrist who specializes in children with autism. She started him on a small dose of Clonidine, which did not react well with his system. We took him off this medication for several days before beginning a different medication.
It was during this lull in medication that my son had the terrible meltdown at school, where I was headed that afternoon.
The seriousness of the situation that day was punctuated by the fact that both the school nurse and the principal greeted me at the school door. After assuring me that my son was calm and safe with his teacher, I was ushered into the nurse’s office where they explained what had happened: Suddenly and unexpectedly, my son had jumped up from his activity and started screaming and throwing himself into filing cabinets, against walls, and onto the floor, apparently with the intent to hurt himself. My five year old, my baby, was so out of control that he had to be restrained by two, and at one point three, adults for his own safety. The meltdown stopped only after he was completely exhausted.
As I attempted to seek mental health help for my autistic child from the school nurse’s office, an image began to form in my mind of a room full of medical and related service professionals loudly declaring, “NOT IT!” The pediatrician’s office said to call the psychiatrist. The psychiatrist wasn’t in, and I got the voicemail of her nurse. The children’s hospital said I could certainly bring my son in to be checked, but they weren’t sure how much they really could do to help him.
The emergency room seemed the best option, so I loaded my now calm and happy boy into his car seat and headed for the children’s hospital, stopping on the way to pick up my husband. We were almost to the ER when the nurse at the psychiatrist’s office called back. “Don’t bother going to the emergency room,” she said. “If he’s not ‘in crisis’ when you bring him in, there really isn’t anything they can do for him. I’ll fit you into the doctor’s schedule early next week. In the meantime, try calling the mental health crisis hotline at 211.”
The therapist at 211 was very friendly, but it became clear that the methods she used to counsel youth in crisis would not be helpful for a non-verbal five year old with autism. She offered to come out to our house anyway, so we decided against the ER visit, turned around, and headed home. A half hour later, she called back to say she had an emergency crisis and couldn’t make it until the next morning. I thanked her and declined, knowing it really wouldn’t do much good.
So there we were, my husband, my boy, and I, in the haze of radioactive fallout from a terrible meltdown. It left us shaken, confused, and isolated. We still knew something was wrong with our son but had no idea what it was or how to fix it. It’s like the warning alarms in our power plant were sounding, red lights flashing, while we sat staring at the computer screens, attempting to make sense of the pressure and temperature data, desperately trying to find a way to cool our little nuclear reactor core and restore balance and peace. With no nuclear engineers rushing to our rescue, we felt completely helpless.
Early the following week, the psychiatrist started our son on Risperdal. To our relief, we noticed a positive change within a day or two. The medication was like a cooling solution for our boy’s over-reactive, over-heating system. He became calmer and more ready to learn. His meltdowns were less frequent, less severe. His smile returned.
Medication is not the quick fix it appears to be, however. We constantly weigh the benefits with the risk of possible side effects. Like the cooling system of a nuclear reactor, it requires monitoring and adjusting. And medication, while avoiding some meltdowns and helping reduce the severity of others, does not address the underlying causes. The communication, social/emotional, and anxiety issues that my son has are still there, bubbling below the surface… “contained”, for the moment.