As a mother to a teenage boy on the autism spectrum, I myself am in a constant state of learning, hence my strong desire to share with you. I want to peel away the layers to reveal the true essence of what it means to live with autism. Simply knowing the definition is not understanding it. I live with autism daily, I am a front line observer and everyday I learn more and more. My son is my teacher and I am forever his student.
Recently Keyan has been having a lot of issues with impulsivity and aggressive behaviors.
I often remind Keyan that I accept him for all that he is
and all that he isn’t.
But,the one thing that is extremely difficult for me to accept
is aggressive behavior. The only thing I want him to be is a GOOD BOY.
From the core of my being I cannot stand confrontation, fighting and violence in whatever state it presents itself. The reason why a person with autism may demonstrate aggressive behaviors is not the same reasons why a person with a normal developing brain would. Keyan has no reason to flex his masculine muscle to prove he is stronger than another human being. His aggression is encoded into his being through his genetics/DNA and has been handed down from our Neanderthal ancestors, who regularly faced life or death situations causing them to go into “flight or fight mode”. They did this because they lived among ferocious carnivorous animals who threatened survival of the species (for more information please visit the national geographic website or google).
You don’t have to have autism to know what “flight or fight” feels like in your body. This response can present itself in very stressful situations. A perfect example is turbulence on an airplane. For some people it sends their heart racing, palms sweating and thoughts of the plane crashing invade their thoughts. In others individuals it merely means the plane has hit an air pocket – no biggie. Often times people with generalized anxiety (when a particular situation presents itself) or an anxiety disorder (those who live in an almost constant state of anxiety) will feel at times that they are in a dangerous situation when in fact they are not – it is their mind playing tricks on them but they feel it’s real*. The stress of a certain situation will kick serotonin levels into overdrive signaling the brain either to “flight” – run away or to “fight” – defend oneself against said danger.
Lately it’s as though Keyan struggles with this “flight or fight” on the daily. His special brain paired with raging teenage hormones and the fact that he is non-verbal leaves his father and I the difficult task of decoding his every want, need, stress and fear. It is as though we have been given the task of explaining to the world what a BITCOIN is – seems simple yet it is very complicated. Talking about Keyan’s aggressive behavior is hard for me because it makes me feel as though I am dehumanizing my own son. I want everyone to see what I see, a boy with a kind soul who struggles through life with a different brain. I always say that if he were “normal”* he would be the kind of boy that people would say to me; is sensitive, smart and handsome (like his papa). They would say things that would make me swell with pride. I am 100% certain that if Keyan was “normal” he would be a kind soul with a lot to offer the world. As I like to remind people “different is not less”. I secretly believe that Keyan is already that contributor to the world and I his vessel to deliver the message. His autism has helped change our little corner of the world. Because of Keyan the Autism Awareness Run was created, S.Au.S. was born and the fight continues for his adult future here in Quebec. Keyan’s autism has altered our lives in ways we couldn’t ever have imagined.
Go back to when your child was a baby. Remember how stressed you were to decode “the cry”. One cry meant the baby was hungry, another because baby needed a diaper change and another because s(he) wanted to be held. As a toddler the cries changed to mean more – think back to the terrible two’s when a cry meant just give me what I want or I will throw myself on the floor and embarrass the hell out of you. Thank goodness that was just a phase because eventually your young child developed language and could request their wants or needs. This is another piece of our complicated autism puzzle – Keyan never learned to speak. I am pretty sure words swirl in his head but his brain will not let them out. I know this because when I talk to him his eyes speak to me. I can see him processing what I am saying albeit most of the time he wants to ignore what I am saying to him. Imagine being in a world where your voice goes unheard. No one listens because you can’t say a word. This leaves Keyan forced to use other means of communications; sounds, body language, pictures, gestures and pointing etc. This was all fine when he was little and his needs were basic. When Keyan wanted cereal – he would walk over to the food cupboard and point to the cereal box. Now at 14 his needs are more complex and harder to communicate. How can he say to us… I am scared, I am overwhelmed, I have a sore stomach, I think I have allergies, I don’t feel myself, it’s too noisy in here, something stinks bad, I have an itch on my back, I’m bored, I want to go somewhere, thank you for all you do mama, I have the best big sister, papa thanks for playing with me, I think she’s pretty, my socks are too tight, there’s no more gum in the house, I can’t find my iPad… how can he convey these thoughts to the world without words?
Keyan works with an internal compass that has two poles; (North and South – Up or down). That means his every waking moment is governed by whether something feels good or not. When it doesn’t feel good he wants out – he wants to quickly make those feelings stop. At the end of the school year students tend to get restless. The excess in class movement, noise and elevated anxiety tend to stress Keyan out – in essence he no longer feels good. June has been hard on Keyan’s nerves because there is an expectation of him to stay in class despite things heading South. We at home along with the teachers and the administration of the school work hard to find solutions to help Keyan get through the day the best he can.
We want the best for Keyan but it makes living our daily lives challenging to jump every time we get a phone call. In the past few weeks I have been called to go pick him up from school because the day becomes too intense for him and we risk full on crisis mode. We want Keyan to know that we are listening to him when he says I cannot handle it anymore. It is our job to listen to his non-verbal cues and manage accordingly otherwise we bring him to that “flight or fight” space. When Keyan decides to fight because he is not being heard, respected or understood the visual is a 5’10” and 150-pound human with glazed eyes lunging forward to grab at you. Keyan will grab at our arms, kick us, bite and sometimes pull our hair when he is in fight mode. It’s not a pretty sight. For some people it is terrifying because they don’t know what to do. They have never encountered something like it. If ever you are near someone in crisis mode, the best thing to do is back away – use little words – make sure that everyone is safe. There are no amount of words to calm Keyan at this point. He has to self regulate by riding out his emotions. At school they have a special room that cuts out all outside sensory input (sight, sound, smell etc.) and this helps calm him. At home what do I do? I walk away to give him the space he needs to calm down. I never ever touch Keyan. If he comes for me I walk away. Remember no amount of words or actions can change Keyan’s frame of mind – it has to come from him.
At home we are counting the days until the end of school – only 5 left. We are confident that summer break will provide him the space he needs to stomp out any aggressive behaviors he has been exhibiting. At home Keyan is happiest where he can enjoy his pool, swing, spa, bicycle, iPad and basketball net. Once he has had a small break I hope his transition into summer camp is seamless. I don’t know what the next few weeks will look like but as his mama bear it is my job to make sure he is safe, happy and healthy.
Thank you for reading.
* An anxiety disorder can be debilitating and one should never judge an individual who has one. Dismissing their symptoms/feelings is very dangerous as it can lead to feelings of isolation, judgement and depression. So please be kind.
*Some people detest when a differential is made between someone who is normal versus some who has autism – the assumption is that the person with an ASD is other than normal. To those sensitive about the difference I apologize. I a merely suggesting that a person with an ASD has a different brain than a normal developing individual.