What really frosts parents of autistic kids.
Before I became a parent, I thought I was an expert on how to raise kids. And I was very “generous” with my knowledge.
Now the shoe is on the other foot. And I understand just how annoying I must have been.
I know that people mean well when they give you advice. I sure did.
And it’s not that I think that I’m a perfect parent who couldn’t use some constructive feedback from time to time. I know that many times an outsider can help you see things that you miss by being involved in all the day-to-day rigors. Sometimes it helps to get another opinion or to talk things out to help crystalize your own thoughts.
But (and you knew there was a ‘but’ coming, didn’t you?) I think sometimes people speak without truly understanding your situation.
And that is especially true when you have a child with autism.
The pointed question
During a visit with relatives a while back, my son was acting out. We tried to get him under control, but we were having a hard time.
One person asked if we follow through on our threats to discipline Kai. The implication was clear. We must not, or he wouldn’t behave this way.
A part of me wanted to react angrily. But I knew that this person’s intentions were good, so I tried to educate instead of explode.
Yes, I said, we discipline our son. We follow through when we threaten to take away a preferred activity. He suffers the consequences of his poor choices. We work on his behaviors all the time. The staff at the therapeutic school he attends works on his behavior. The therapists he sees outside of school are working on it.
And still, he will have outbursts or say things he shouldn’t or do things he should not.
It can be frustrating.
But that is how it is sometimes when you have a child with autism.
I later recounted the exchange I had with my relatives to other parents of autistic children, as well as with therapists who work with our son. The reaction from each was always the same.
“They just don’t get it.”
An invisible disability
Autism is sometimes called an invisible disability because casual observers do not always notice its effects. In the case of our son, someone looking at Kai may think that he is a typical child. His autism is not always readily apparent. So, if he is misbehaving, someone may think that it must be because we are bad parents.
There is perhaps nothing that frosts parents of autistic children more then when people assume that their kids’ actions are the result of bad parenting. So, for those of you with no first-hand experience, let me address that perception.
Autism causes a child to behave differently than typical children. Autistic kids cope with their world differently. Autism can result in difficulty waiting for what seems to be a reasonable amount of time. It may lead to being overwhelmed in a loud, chaotic or unfamiliar place that is of no problem for others. It might prevent someone from being able to tolerate discomforts that don’t bother most people. It may keep a person from being able to express what is bothering them.
A child with autism will often fiercely try to maintain control of everything because that is the only way they know how to cope. They may be rigid in sticking to routines and resisting change. And when things don’t go the way they want, they may act out far more severely than a typical child would.
The resulting behavior may look like that of a spoiled child of a bad parent.
It is not.
Pledging to be more understanding
I don’t expect anyone to truly understand autism until they have lived it. But I do think we all can be more understanding of others.
Can we all try to be quicker to empathize and slower to judge?
If we see a mother struggling to keep her kids in check at a grocery store, can we give her a kind smile instead of a disapproving frown?
For my part, I’ll try to be less generous in offering unsolicited advice, at least until I’ve first tried to understand and be compassionate.
And now that you understand where I’m coming from, I will take your constructive criticism. Thanks.