“I love my son just the way he is and I wouldn’t change a thing.”
“I work hard to help my son to manage his Autism.”
These appear to be contradictory statements. I wouldn’t change the way he is and I work to change him by managing his Autism. But they are not as contradictory as they first seem.
If you have had a baby, think back to when you first held your newborn child in your arms. Your perfect little bundle. You loved everything about this amazing creature and would not have changed a thing.
Except that your baby didn’t know how to speak. Well ok, you would need to change that. And your baby didn’t know how to walk. Yeah, you would work on that too. Not using the toilet? Most definitely would need to change that.
When you got to the toddler years, you enjoyed your success in changing your precious bundle from being fed by you to a creature that could put food into its own mouth. And put it on the table. And throw it across the room. And on the cat.
For your child to be able to function in the family and other social settings, you need to change the throwing food thing, too.
You can see where this is going. Most parents love their children exactly the way they are and also work to make changes in the child. Changes that enable the child to successfully function in a family, in a community, and a culture.
We teach language, add social norms. Even adapting when the child makes it clear that he wants to make changes too. Ideally, loving who the child is includes incorporating an understanding of who the child is into how the changes are made and what strategies are used.
It is simply assumed that parents will automatically make these kinds of changes in their children, that it is an overarching element of parental responsibility.
Parents are subject to scrutiny, judgment, and ridicule if they are perceived to have failed to makes these societally expected changes.
Changing your perfect bundle is assumed and expected.
Autism adds a whole different dimension to this. Because along with societal expectations of change are societally assumed means of making the change – rewards and consequences.
These are meaningless to our son. When he is perseverating or melting down, it is not a power struggle, it is a response to something he does not know how to manage.
What he can get or what he might lose are irrelevant in that moment and useless to control behavior.
If my child has difficulty speaking, eating, or with toilet training, as a parent I am still going to work to make changes to achieve those things, in a way that is best for my child.
This does not mean I want to change away the Autism.
And therein lies the heart of the apparent contradiction. Each child on the Autism spectrum is different, sometimes very different from the next child. Hence the word “spectrum.”
Not knowing what to do, parents look to each other’s experiences, as well as our own, to try to find the best way to work with our children. We rely on therapies that may or may not be applied with the individual needs of the child in mind. We try to apply broad approaches to individuals.
Not everyone is able to take the general and tailor it to the specific.
I have often said that it is a paradox that I would not have wished Autism for my son and that I would not change anything about it. A paradox is “a statement or proposition that seems self-contradictory or absurd but in reality expresses a possible truth.”
Loving my child exactly the way he is and wanting to change him as is best for him is not a contradiction, if one sees the truth in the paradox.