How to survive as a parent w/ a child of Autism Day 4 - when people offer advice, don't kill them

*This post is part of my Autism Awareness Month series. If you would like read more like this, Click Here.

If it is true that it takes a village to raise a child then to raise a child with a Autism, it takes a village filled with a careful balance of crack-team scientists, nutrition experts, speech language pathologist, plus occupational/behavior/physical therapists.Not on the list of village members: friends and family who are unwilling to ever learn anything about your child's autism or what you and your family are going through. This won't, however, stop any of them from offering up some condescending oversimplified advice and when they do, I welcome it like a punch in my face and quickly want to reciprocate.

Something I'm certain that every Autism parent goes through is having a friend of family member (maybe a sister perhaps) spend an afternoon at your house and experience some of your child's autism wonderfulness. Then this person says something like -

"What you need to do is discipline him more."

My wife and I have heard these words and whenever I relive this moment, I feel so angry. For someone else to come into my situation and assume that after one day they've figured out the cure to Autism. Or to suppose that my son doesn't have Autism (like the Board Certified Developmental-Behavioral Pediatric Specialist who leads the Autism/Asperberger's division at Children's Hospital does). But really, thank you SO MUCH for opening my eyes.

My son has a sensory issue with wearing clothes - that is, he hates wearing clothes. It's a daily struggle to keep underwear on him, although he is very agreeable to wear pants when there is going to be company. He just can't stand the feeling of them. What's also funny is that when he does wear pants, he hikes them nearly up to his neck every time.

When my grandmother was still alive, she was very disturbed to find Noah wandering around the house naked. Had I been alerted that she was coming over beforehand, I would have had time to negotiate some pants onto that boy. From that day forward (until she passed away) I would get frequent phone calls expressing how important it is that he always have his pants on. I would try to explain that its a sensory disorder stemming from his autism, but those were wasted words. She would suggest that I tell him the new house rule is that he has to put his pants on or he can't come out of his room - sure, that would have gone over well. She also suggested that maybe because Noah is one of 4 kids, he always has to compete for attention and maybe his speech was delayed because he wasn't given enough one on one attention.

Ahh, to have that wonderful family support. . . This is why it is so important to raise awareness about Autism to those around you. I do this by  writing these posts for example, or just sharing with my friends or family about things are going but prefacing it with "don't try to fix any of this, just listen. Or else I will probably hate you."


Bob Bledsoe said...

This was great Chase. I hope the people who need to hear this message come across your blog... Well done my friend!

Chase Roper said...

I'm so glad you enjoyed reading this and thank you for commenting!

Chase Roper said...

Don't worry, you're doing just fine! Especially if you are even reading up on the subject. That's much better than anyone on my side of the family ever did.