STRUGGLING WITH AUTISM
My mommy and daddy were very sad when I was diagnosed around two years of age with autism. Not that they regretted having me in any way or wished I was a ‘normal’ child (they said they only loved me MORE after they found out), but the sadness was a result of deep insecurity related to my future. I’ll be honest; the range of possibilities in development for an autistic child goes from one end of a spectrum to the other one, and that spectrum is gigantic. Whether I’ll always be completely dependent on the care and support of my family and never talk, or whether I’ll finish college, marry and start a family one day is something no one can predict at this time. Maybe I’ll end up somewhere in the middle. I don’t know. Mommy and daddy are also worried that I may develop epilepsy over time, or a depression, conditions often linked to autism disorder. I understand that it worries them and that mommy bursts into tears from time to time. I think these uncertainties are the hardest struggles for parents, even harder than dealing with the typical behaviour of an autistic child.
And that behaviour is mostly an expression of our own struggles. When an autistic child cries or bonks his head on the floor, we are trying to express frustration. It’s a way for us to tell you that something is wrong, that we want something, but don’t have the means to tell or ask you. That we feel sick or are simply just longing for a snack. It’s a genuine cry for help. We don’t have any alternatives when it comes to letting the world know what we want.
I hope the people at the playground will consider this next time they see me burst into tears and scream out loud when my mommy tells me it’s time to go home after playing outside on a Summer afternoon. I wish I could say: “Mommy, can we please stay longer?” Instead, I don’t know why she picks me up to take me away and the only way I know to tell her that is by screaming and crying.
When daddy puts on Dora The Explorer on TV, but I would like to watch Peppa Pig how do I tell him that? I cry, lie down on the floor, kick my feet in the air and hope he will understand that I’m not in the mood for Dora. I want Peppa.
These tactics have worked so well for me so far.
Why would I even need to learn how to speak? How will I benefit from it? I already know exactly how to get my way and it works every time.
I really wanted to play with my toy race car in the morning, but my mom didn’t seem to understand so I started bonking my head on the floor. She picked me up and I continued bonking my head on her shoulder and face. I think this was a little bit too much for mommy (it was also that time of the month…) and she called daddy and he came home from work to share the load. They tried to figure out every possible way to sooth me. When they didn’t know any more, they let me go and guess what: I found my toy race car!
Even when I’m not using anger or frustration to get my way, I do it non-verbally. When I want a drink, I simply grab my mommy’s hand and drag her into the kitchen where I push her hand towards the fridge. That’s enough. She understands I want a Coke.
If she gets me juice, I start to become fussy. If she gets me chocolate milk next I start to shout. I thought I made it perfectly clear: I want a Coke.
She says: “Tell me what you want Finn!”, but getting me to talk is the main struggle my parents –and I- face at this moment. It’s also a big struggle for many autistic children. It’s quite common that we don’t speak before the age of 3 and even then, there are many autistic children who start saying their first words when they reach the age of 5 or 6.
Some of us will never talk.
But we never remain silent.
We all have a voice.
Thanks for listening.