I trust your intentions. You parents love your children. I do, too. When something bad happens to one of them, it means days without a good night’s sleep for me as it must for you. I am desensitized to human suffering. I grew up in hard places. What still hits me like a blow are stories of a kid like the one at your dinner table being bullied, mistreated, denied an education, abandoned, killed.
Daily care, unending worry, give you a place in the discussion about the future of autistic people. The decisions society makes will effect you for the rest of your life. No reasonable advocate would suggest we should go it alone. Your best contribution is to share your experience of parenting. Saying you can understand the autistic experience as well as we can is like being white and saying you understand the black experience as well as your African American friend. You can care. You can get involved. You can ask us. Your help will be appreciated by all but a few radicals. Still, your perspective will always be an outsider’s. Your descriptions of our experience will never carry the weight of our own.
I appreciate the admission of occasional failure. I hope you understand that we have to call you on every new slip. When parents raise money for Autism Speaks so they can make more videos implying we might be better off dead, I will speak up. When they set low expectations that will prevent children from living up to their full potential, I will say something. When they refuse to let their kids experience occasional failures, part of a full, healthy life, they can expect to hear about it. When they suggest segregation is in an autistic person’s best interests, I will tell them they are wrong.
I badger you out of fear for your children. Comments that said many of us speak out of pain were right, but you should take that seriously. As a child, I was so forcefully trained against my own instincts and desires that I have trouble knowing them. I have difficulty wishing, dreaming, creating and articulating an “I want” distinct from what is practical, moral, or proper. If you listen to those of us willing to be cautionary tales, you might not repeat our parents’ and teachers’ mistakes. The overriding goal of my life is that your son or daughter will have it better. If you listen to our experience instead of telling us what it is, you will learn. You will know what is likely to hurt your kid. You will understand what looking normal costs us well enough to make informed decisions. You will be an ally instead of another assailant. If you accept that you approach our experience from a position of ignorance, you can learn from years people my age spent as guinea pigs. The outside world is dangerous enough for your kids. Give them safe homes.
One more thing:
Make no charitable assumptions about me. If I chew you out online, I mean it.