To the Doctor Who Unknowingly Said the Wrong Thing When Our Son Was Diagnosed With Autism
Dear Dr. Aaron*:
More than seven years ago we sat down in your office so you could tell us what we instinctively already knew. You confirmed that our son’s developmental delays and lack of meaningful social connections were caused by autism.
During our meeting, just days before Evan’s 2nd birthday, all we could think to ask you was what you thought he would be like when he grew up.
You immediately answered us by telling us about a boy you knew who went to a community college and had a girlfriend. (But, you added she won all their arguments.)
Seeing the multiple degrees hanging on your walls and all the scholarly books lining your bookshelves, we left your office at a prestigious hospital thinking the best we could hope for was community college and a girlfriend who is always right.
In retrospect, our question was not a fair one. You are not God. You do not have magical powers, and you do not have the ability to see into the future. A friend best described you when she compared doctors to meteorologists. You can take all your knowledge, she said, and give us your best guess. But, she said, every storm is different and every storm can take an unexpected path.
How often do you have to look across your desk at an anxious set of parents and tell them their child has autism? Based on the most recent statistics of 1 in 68, I’m guessing these conversations are quite frequent. I’m also guessing it doesn’t get any easier, no matter how many times you have to do it.
I would like to give you a suggestion on how to answer the question we asked so many years ago because this is what I needed to hear from you on October 29, 2007:
No one knows what the future will hold for any child. Yes, the journey would probably be easier and perhaps more predictable if you child did not have autism. Your job as a parent is to continue to love your child as I know you will and never ever lose hope. But, when you do, because it’s bound to happen on many occasions, don’t forget to find it again. It’s still out there and always will be. Just be realistic and focus on the journey and not the destination. Enjoy your child. Advocate for your child. Work hard for him. Push him to work hard for himself. The sky is the limit. But also know that he may not reach the sky. He may barely get his feet off the ground and that’s OK too.
So please, Dr. Aaron, instead of telling your story of community college and a girlfriend, please consider telling parents what I needed to hear at the start of my journey. You have my permission to take my words verbatim. Claim them as your own or alter them as you see fit. Just spread the message of realistic hope.
Please, share this advice with your colleagues as well because every parent of a child with special needs has had an adverse experience with a doctor or other specialist along the way, particularly when that doctor or specialist does not know how to answer a parent’s question.
You have a tough job. I don’t envy you. When parents ask you these difficult questions, answering is a hard balancing act. We parents need hope because hope gives us a reason to push forward. But while hope can be so powerful, false hope is so devastating so please, be careful.
Thank you.
*This doctor’s real name has been changed.