I Am an Expert on My Son
I admit; I don’t know much. I’m new to this autism thing. I’ve done some reading, and I’ve talked to some people who seem to know what’s what, and I’ve talked to others who contradict them.
To be honest, I don’t know what to believe about vaccines, gut issues, biomedical treatments, or how evil this or that organization might be.
All I have is my own story. And you have yours.
But for the life of me, I can’t understand the vitriol hurled over the heads of our children. I really can’t. Whether autism is a thing to be cured or embraced, whether it is caused by chemicals or genes, all of us are trying to figure out which way to go with our kids. If we are talking together, researching, pursuing what we believe is right for our kids, well…shouldn’t that be enough to prove that each of us loves our kids?
I’m not trying to form a Kumbaya circle. I’m not trying to make everyone get along.
I’m saying it’s time to honor each other’s story.
That’s why I write about this issue. I am no expert on autism, and I won’t make experts of any of you. But I am an expert on my son.
If autism has been a blessing in your life, I honor that. There is much gold to be mined in every situation. I will not try to dissuade you of your story. It is your story.
My story is different. My son was progressing normally, and then he changed. He retreated inside himself. His words disappeared along with the personality he had developed. Jackson is still, at the age of seven, a phenomenal blessing in my life, and I love him more than I can ever say. But he is not autism. His condition is different than his person. And I’ll be honest: thus far, his condition has not been a blessing. It has caused a good deal of frustration and angst for him, and confusion for us. There is a block in our communication.
I want that block gone. God help me, but I do.
Maybe my perspective is wrong. Maybe it will morph in the future, and I will realize that autism really is a joy and a blessing. But thus far, in my family story, it hasn’t been that.
I hope we will, one day, come to a consensus about these issues in an objective way. I want to be able to agree on the definition and cause of autism at least. Then we might have a better idea on how to move forward.
But until then, all I have is my story.
And you have yours.
I understand – with my two boys I would definitely say that while I love them, I do not love the autism that makes everything difficult and frustrating for them. I feel like autism (even with boys who are considered “high functioning”) puts up a filter between us, so I see glimpses of who they really are, who God created them to be, through the autism. I can see who they are meant to be, but the reality is that their disability is holding them back from being fully who they are.
I think what concerns some parents is that to them, their kids qualities, all of them, are attached to the autism. They fear that the child they know and love will disappear if their child is “cured”. But I know the artistic ability in one son, or the interest in how things work in the other is not because they are autistic – it’s because they are who they are, and they will be who they are regardless of whether they are ever free from autism or not. But life would certainly be easier, both for them and for our family, if they were free of negative aspects of their disability.