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The Fight of a Lifetime: Aggression and Autism
By Kristi | Published | No Comments
One of the most challenging aspects of raising a child on the spectrum is managing behaviors. While they come in all shapes and sizes, they share many similarities. But probably one of the most challenging is physical aggression. This can take the form of property destruction, self-injurious behavior, or worst of all, physical aggression towards others. Over time, it can take its toll, especially for those on the receiving end.
In my career as a paraprofessional and behavior technician, I have been hit, punched, bitten, slapped, kicked, spit on, hair-pulled, clipped by objects large and small (from pencils to desks), and the like. All in varying degrees of intensity and duration. Yes, it was all part of my job, and I realized most of the aggression I received was not personal. It was often in response to a demand, trigger, or other antecedent. For the most part, I dusted myself off and moved on. However, I found it so much more challenging in situations regarding my son.
If you’re a parent, I’m sure you can relate. It is about you, and it isn’t. It feels more personal because in fact, it is. And no matter how many times you tell yourself it isn’t, there is that small part inside us that feels betrayed, bewildered, and hurt- both physically and emotionally. There is often guilt for even feeling that way.
My son is 31, profoundly autistic with an intellectual disability and limited verbal expression. At 6’4”, 215 pounds, he can pack quite a punch. For years I kept this part of autism to myself. Fear was a major reason. Fear of how my son or I would be judged, fear that others would perceive my son negatively, fear of failure, and of course fear for myself and others, especially his sisters.
This aspect of autism makes others uncomfortable and is seldom discussed except within that select group who experiences it as a part of life with autism. However, with the increased presence of social media, there are more parents speaking up, like Eileen Lamb, Kieran Rose, Kate Swenson and others who are lifting the veil of taboo regarding the subject. Even Facebook groups like Autism and Aggression You’re Not Alone, and others that focus on managing the challenges of aggression at home, school, or in the community are starting to become more prevalent. Support and awareness are important because statistically, aggression is often a component of autism.
Recent research studies indicate the prevalence of aggressive behaviors in individuals diagnosed with autism ranges broadly from 9% to 68% depending on numerous factors like age, setting, and overall definitions of aggression. Equally important factors include the individual’s functional ability, verbal or nonverbal, and co-occurring conditions like ADHD, sensory processing sensitivity, and the like. Add medical conditions like IBS or other GI issues, sleep disturbances, PANS/PANDAS (Pediatric Acute Onset Neuropsychiatric Syndrome), metabolic or hormonal shifts, or even dental pain or an ear infection, and the list is extensive. Given my son’s inability to communicate pain, stressors, or other antecedents due to his limited verbal expression, aggressive outbursts are often the first form of communication.
Jonathan was diagnosed in 1998- the term back then was PDD-NOS, Pervasive Developmental Disorder, Not Otherwise Specified, or in today’s vernacular: Autism Spectrum Disorder. To better increase understanding, labels and terminology have changed over the years. For example Jonathan’s PDD-NOS was diagnosed as moderate autism on a scale of mild, moderate or severe. That has transitioned to levels, numbers, and the term profound autism, which most accurately describes my son. However, what hasn’t changed is actually recognizing the profound differences between autism on the spectrum. Those of us among that group have a heightened awareness of aggression in its many forms, as it is statistically higher. However, addressing aggression in autism is like a swing and a miss. Yes, it gets mentioned; yes, there are “studies”, but it’s the elephant in the room. The prevalence isn’t just a statistic; it is a gaping hole of supports and resources for parents and their children struggling to find their way under very difficult circumstances. And those facts and figures fade away as their children become adults. The divide often widens and leaves many parents completely on their own, feeling overwhelmed, exhausted, and desperate for help. Especially single parents, burning the candle at both ends.
Those of us living in this arena are frightened and rightly so. Yes, the aspect of personal safety for us, others, and our loved ones is always at the forefront. But what I find more appalling is the callous lack of indifference exhibited by some, especially by those in positions to affect change, fund more resources and support for all, regardless of where you live. Professionals who turn a blind eye when they witness the mental and physical impacts of those living daily with aggression, or worse yet, even blame the parents or caregivers. Add the vicious attacks on social media when those at their wits end looking for aid or just empathy become a punching bag for even mentioning what their world entails.
Aggression and autism are a very real aspect for many of us. Honestly, it could be its own spectrum within profound autism. But it is a very different fight, one that is often too hard, too raw, and painful to witness. For many, they stand in that ring alone, loving someone with all their heart and soul even in the most horrific moments of aggression. We are not telling our truths to gain sympathy, demean our loved ones, or discredit anyone else’s experiences. I think that’s what frustrates me the most- the attacks from others because our portrayal of autism doesn’t resemble the Hallmark version of life on the spectrum. Portraying us as monsters or cold-hearted, unfeeling parents and caregivers for speaking about the reality we live on a daily basis. How many punches, kicks, trips to the ER (or worse) does it take? What TKO will finally bring awareness and acceptance to this issue, and at whose expense?
If you’re a parent in similar circumstances, I’m right there with you and our work is far from over. Whether you are just starting your journey or, like myself, raising an adult or somewhere in between, we need to start swinging at the obstacles and opponents that stand in our way. Push back and not take no for an answer. Speak our truth without fear of repercussion or retaliation. Put up our gloves, share our experiences, increase awareness and fight for the safety of ourselves, our loved ones, and others without getting boxed into a corner. Make no mistake: this is a fight. Not with our loved ones, but with those who do not accept aggression and profound autism co-existing on the spectrum. But they have underestimated us, and we can give more than we get. Attempting to silence us is not acceptable, in any form.
While living with aggression has become our way of life, it is not a life we would wish for others. However, public opinion in the form of compassion and support isn’t too much to ask. Neither is asking autism advocates, political officials, medical professionals, and others to step into the ring as proponents of much-needed change in a system that is failing adults and children with aggression.
And when you see us go down, be that person who lifts us up and stands in our corner.
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