by Rachel Nichols
Autism lives here and it has always lived here, long before we knew it. It lived here when my son was a baby and refused to eat. It lived here when he would cry when other kids at daycare would try to play with him. And it lived here when he would hit the same button on a toy repeatedly for hours.
Autism will always live here and that is OK. Autism can be beautiful. As an observer, we get glimpses into a world different from our own. Some of the quirks are fascinating and amusing. However, it can also be ugly.
Spencer’s primary diagnosis is Say Barber Biesecker Syndrome. SBBS is a rare genetic syndrome that causes a variety of developmental and physical disabilities. His father and I realized early on that there was something else going on beside his syndrome and we expressed our concerns to our geneticist, who reassured us that SBBS characteristics mimic those of autism. But we weren’t convinced.
Spencer was a well-behaved child. While he would have “melt downs,” they were usually predictable, and strategies to help him regulate, if he did have an appropriate one, worked well. If he would start stimming in a way that he could hurt himself, like hitting his head against the back of his wheelchair, we could redirect him and that usually worked.
During a difficult hospital stay, we were referred to a psychologist to discuss some of the self-harming aspects of his behavior. After some testing, he was diagnosed with Autism at the age of three. We concluded that we were doing all the interventions he needed at that time, so we just carried on as usual.
The realization that Spencer was developing behavioral issues came slowly. He started head butting us, sometimes for no reason. He was constantly anxious and irritable, and his meltdowns were becoming more frequent and less predictable. The moment I fully realized that we were in over our heads was when he got upset while I was carrying him and he started hitting me and thrashing around, so severely that I accidentally dropped him. I called the psychologist the next morning asking for help.
The psychologist referred us to a psychiatrist in the same practice, mainly to be on that doctor’s radar. Our psychologist agreed with our philosophy of not medicating Spencer unless he became dangerous to himself or others. Upon meeting with her, she suggested a few things to try and agreed that medication wasn’t absolutely needed at that time.
Choosing to Medicate
Spencer started Kindergarten shortly after that appointment and did very well. He thrived on the structure that school provided, and most days that mood carried over to home. Weekends, especially Sundays, were troublesome because of being unable to replicate the school’s structure. Then summer break started and we started having more bad days than good days. He would constantly scream, cry, and hit us.
It got to the point where he would yell and I would clench up because I knew he was going to throw a toy as hard as he could on our hardwood floor. When something set him off, it’s like he went into this Hulk-Smash mode and nothing in his path was safe, including his siblings and us. None of the strategies that helped in the past made a difference, and his behavior was no longer predictable. It got to a point where I no longer recognized him and longed for the child he once was.
We met with his psychologist at the end of summer break and she brought up medication. I was still hesitant about medication and we agreed that we would see if things improved with school starting back. While his behavior was mostly good at school, the second I picked him up the screaming started. We had a follow-up with both his doctors a few weeks after school started. She wrote him a prescription for Tenex, a medication commonly used to treat ADHD, which can be beneficial in treating the behavioral aspects of autism.
It took me a week to give him the first pill. I discussed the medicine with other parents of children with special needs, his teachers, and his therapists. His ABA therapist said, “It’s like he’s uncomfortable in his own skin.” While his father and I had been resistant to medication because we were afraid that it would change who he was, we finally realized that not medicating him was turning him into someone else.
Finding the Right Medication
While Tenex is a great medicine that works well for a lot of people, it did not work for Spencer. His focus was better, but after a few weeks of being on it, his aggression and irritability became nearly unbearable. We were a week away from his next psychiatry appointment when Spencer became dangerous. He grabbed his baby brother by the shoulders and started slamming the back of his head against the wall. Luckily, I was just feet away, but in just a few seconds he slammed his brother’s head four times. I had to tear Spencer off him. While his brother was fine, had I not been right there he could have been severely hurt or worse. I called his doctor who told us to stop the Tenex and we would look at other options at his upcoming appointment.
I researched Risperdal before his appointment. We had a psychology appointment a few days before seeing the psychiatrist, and the doctor agreed it was a good option for Spencer and she had seen several children do well on it. I again sought out the advice of other parents and his therapists. His psychologist also thought it was a good idea and the logical next step.
We’re about six weeks in on his new medication. While things aren’t perfect and we’re still figuring out dosages and such, we’re having fewer and fewer bad days. After a couple weeks I thought, “I have my baby back. I missed him.”
Autism still lives here and always will. No medication will ever change that, and that’s okay. Autism is still beautiful and isn’t something that needs fixing.