When Your Child Can’t Tell You He’s Experiencing Psychosis

Just when you think you might have a grasp on autism spectrum disorder, other diagnoses can manage to find their way into your child’s life. What happened to my husband Bill and I this past year and a half has really tested our lives and our marriage.

In 2012, I was looking for a new way to help my child. I started researching service dogs, and with the help of another local family plus many volunteers, we raised enough funds to get my son Alec his own autism assistance service dog. This dog was absolutely amazing, but our child was still having trouble. Nothing could stop the downward spiral. Soon, it was like we had a completely different child.

In late 2012, we added an ADHD diagnosis to the mix. In April of 2014, we added epilepsy when we witnessed his first seizure.

A change in school programs didn’t help, and he had become physically aggressive toward teachers, caregivers and even his family — including his little 8-year-old sister. We were in crisis. Alec couldn’t tolerate the bus ride to school, let alone a few hours at his program. The school he attended was the highest-level behavioral program for children with autism in our area. We made the decision to pull him out of school. This lasted for six months.

We now know our child was experiencing psychosis. He just didn’t have a way of telling us.

Children who experience psychosis at an early age are rare. Psychosis is a symptom of mental illness and is on the schizophrenic spectrum (yup…another spectrum like autism!), but childhood-onset schizophrenia can be really hard to diagnose — especially if the child can’t communicate exactly what he or she hears. Alec has moderate severity of autism and low verbal ability to express anything more than his basic likes/dislikes, wants and needs. These obstacles in communication and comprehension could make it near impossible for his mind to differentiate what’s reality and what’s mental illness.

So how do we know he’s hearing voices? Bradley Hospital in Rhode Island confirmed when he’s having a staring spell and you can’t get through to him (even if you call his name several times), he’s focusing his attention on listening to something others cannot hear (they ruled out “absence seizures” which can look similar). Prior to medication, we believe the voices he heard were very negative and caused aggressive behaviors — which is common with childhood-onset schizophrenia.

A psychiatric ER visit and inpatient hospital stay later, we had more answers and medications to help Alec’s functioning and emotional state. With an increase in the appropriate medication, and admission to a wonderful residential school program near us this past May, Alec is now happy, healthy, out in the community regularly and attending school again. We are so grateful for the resources and support we received to get our family to a healthier place. 

Managing his illness will continue to be a challenge  — we may not know until it’s too late if he needs a medication switch because he can’t express what’s happening in his mind. But we’ll learn to rely on behavior to tell us what his voice cannot.

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