If you have a child with autism who suffers from behavioral symptoms, this post is my way of saying: you’re not alone. It is an unfortunate fact that many children with autism exhibit symptoms in three domains: social, language, and behavioral, including aggression and self-injury.
“Aggression and self-injury may be associated symptoms of autism and can result in significant harm to those affected as well as marked distress for their families. The precise nature of the relationship between aggressive or self-injurious behavior (SIB) and autism remains unclear …”
When my son was young, the first indications that something wasn’t quite right were a series of symptoms that aren’t often associated with a possible autism diagnosis: head banging, hitting others, and screaming meltdowns. These were nothing like the symptoms parents are most often taught to look for, such as poor eye contact and language delays. My son spoke his first word at just under nine months old and spoke in short sentences by 18 months old, and he generally made eye contact, though not perfectly. Early on, we never thought of autism when we looked at his symptoms.
The social stigma associated with having a child who communicates through aggression, or who chooses the “fight” part of the fight or flight response, consistently, can’t be overstated. It’s not unusual in my experience to find family or friends who fail to understand that the behaviors are part of the disorder, and not something that can be disciplined away. Parents are often left feeling inadequate, frustrated, and alone, even when the diagnosis is known and accounts for the behaviors. Insurance didn’t, and often still doesn’t, pay for ABA therapy, so parents are forced to scrape for what they can pay for and skimp on what they can’t.
When my son was young, this part of autism was the biggest challenge for us. Social outings of any kind meant I had to follow my son as he played, something we both resented but knew had to happen. Family functions were much the same. Our social lives disappeared and the stress of any event was enough to make us — often — stay home, increasing our isolation. The only outlet I had, as the stay at home parent, was an online support group and a blog where I could connect with others in the same situation.
This is not the autism of pretty brochures and awareness campaigns. This is the darker side of autism, the side people would prefer not to know about, that parents are stigmatized for, and that children suffer through in isolation from their peers.
Before I go on, let me be clear: this is not the same as a child who, because of bullying, social isolation, or other cause, plans a violent act. This is not school shootings or other deadly violence, which is as rare among children with autism as it is among children without.
Autism aggression is generally unplanned and uncontrollable for the child.
My son was removed from school and home schooled for two years in his tween years, and then again for part of high school. Hormones exacerbated the symptoms of behavioral outbursts, and with a low frustration tolerance and high levels of impulsivity, no school setting (that we could afford) offered any hope.
Then we moved away from our home and family (with my husband driving a long-haul truck to support us until he found another job), and we found the resources we were looking for: a doctor and therapists who understood, a school district with appropriate resources, and well-trained teachers.
And over the last year, the change has been amazing. Maturity and well-managed care have enabled my son to be less reactive and more proactive about his own responses and health. For the first time in sixteen years, there is hope for his future.
To all the parents out there struggling silently and fearful for your child with autism, the message is this: keep looking and fighting for resources and never give up. You are your child’s advocate, and your own as well. Find support groups, in person or online. Find other parents who understand; they’re out there. Change doctors if yours doesn’t get it.
And know you’re not alone.