I still recall the psychologist’s voice as she was officially confirming Emilio’s diagnosis. It was shaky and uncertain, her words failing her. She paused numerous times in search of what to say and how to say it knowing full well that this moment would forever change our lives.
And it did.
Nobody could have prepared me for the challenges we were about to face or the uphill battle with the government and school districts to get the services that were lawfully entitled to him. I wasn’t even remotely prepared in understanding or finding the right therapy for my child. The uncertainty of what I was supposed to do for him was paralyzing and daunting. It felt like I was searching for a needle in a haystack.
How do I know what works best for him? I don’t know anything about autism. Wouldn’t the professionals know more and couldn’t they possibly refer me somewhere, anywhere?
But I quickly realized that not many people knew much about autism (at that time) let alone what therapy works best for my child.
I knew then that I was the best person in my son’s life who understood him in a way nobody else could. If I wanted my child to have a quality life that he deserves just like anyone else, then I absolutely needed to accept and acknowledge that he was autistic.
People ask me if I am comfortable with saying “my son has autism” or “my son is autistic.” For me, they both mean the same thing. My son has autism, he lives with it every day, and yes, he is autistic. Neither sentence will mitigate his autism nor will it justly describe the quality of life that he lives.
Words will not shape or define my child.
His actions, his interest, his words, his understanding, his playfulness, his routine, his scripted play, his humor are all just a small fraction of who he is.
He is this and so much more.
He is this and so much more to come, as he will soon enter adulthood.
His autism doesn’t define who he is but it certainly shapes him as the unique individual that he is, equally deserving of respect and dignity like anybody else.
How I see him is crucial to how he sees himself.
I wrote this a while back, and it is still very true to this day:
Emilio understands that he is autistic to a certain extent. He understands that certain parts of his behavior, such as stimming and continuously watching the same five minutes of a television show on YouTube is part of his autism.
He doesn’t see this as a negative thing because I haven’t raised him to see it as negative. He sees it as normal and just part of what he does.
Living in denial or not accepting the full extent of what the diagnosis entails will not serve any positive purpose to my child because denial is living with negative energy and negative energy is so emotionally draining.
I am the best person that understands my child and my child needs me to advocate for him until he is capable of advocating for himself.
Acceptance of his diagnosis will ultimately make him feel that he is equal, not less; that his voice matters just like anyone else; that he is not different because of his special needs but rather the same because we are all human; that differently-abled people are still abled-people doing things differently; that being unique is what is missing in the world and that he deserves the same amount of respect and dignity to learn, receive an education and be part of society.
I’m not saying that it’s going to be easy and I’m not saying that every day will be a fantastic day. In fact, some days will just be really sh**ty but believe in yourself and in your child — that you both have what it takes to move forward and thrive. Don’t let anyone tell you otherwise.
I will leave you with something I wrote on Facebook:
You can tell me that autism is hard, that my child is different and that the challenges he faces today may stay with him for a lifetime, but here is what you can’t tell me. You can’t tell me that his life and his experiences are less significant and less meaningful than anyone else. You cannot tell me that because he may not achieve major milestones like graduating from college, getting married or driving a vehicle that he is unhappy and unfulfilled in life. You cannot tell me that there isn’t any room for him in society. You cannot tell me that acceptance is a luxury and you most certainly cannot tell me that he is not worthy of equal respect and dignity.
This post originally appeared on SpeakingAutism.ca.