“Why do I have Autism?” My family’s story

“When did I get autism?”
“Why do I have autism?”
“Why did you become an advocate? Because of me?”

Talk about a way to make a mother’s heart burst with pride, swell with joy, and ache with sadness filled with hope, all at once.  The real, meaningful conversation about autism, completely child-directed, was an hour of some of the most intense connection I have experienced with my son.

When your child for so long has spent a great deal of time living in his own world, a place which feels safe to him, where weather and bears, calendars and Presidents,  make him happy, you wonder if he even could understand that he has this neurological disorder and what it means.

I learned tonight a lot about what it means to Andrew.  He couldn’t quite grasp that he was diagnosed with autism when he was two, but that he has always had it.  I explained it was part of who he was, kind of like the color of his skin.  In a gentle and simple way, I told Andrew that having autism didn’t mean there was something wrong with him; only that it affects how he learns and feels.  We talked about how kids with autism sometimes have a hard time talking to other kids and that school can be hard if there are too crowded and if teachers don’t help kids in the best ways for the student.

He took it all in.  Maybe because he is finally in a place where he can access these feelings and questions (having a night alone with Mom helped, too).  He asked for some hugs, seemed to seek out and enjoy hugging his big stuffed bear, he seemed at peace with what had been said.  He also seemed to understand it.

Finally, the question about my work, since he often overhears me say I chose to do this work because of him.  I explained that I learned a lot about helping kids go to the right school for them because of him.

For the record, this is his story. We tried the school district’s way, then we augmented it, subsequently determined it was not working, enrolled him in a therapeutic private school, pulled him from that school because of unnecessary restraint, brought him back to the public school setting with a 1:1 aide, and, fast forward to the recent past, tried a school with ABA methodology which wasn’t the right fit, and, finally, found a program which seems pretty perfectly tailored to his unique needs.


I went to trainings, took classes, went to school, learned from and studied under seasoned special educators and advocates, and realized somewhere along the way that not only was I good at both advocating for children and training parents and providers, but that I loved it.  I always tell my children that helping kids is the best job in the world.  Tonight, I told my son he, along with his sisters, is my inspiration, and that I was so proud of him.

Perhaps I am deluding myself into believing he “gets” more than he does.  All I know is that my child with autism did something I never thought he was capable of doing.  He surprised me.  He brought me  joy.  Tonight, I am at peace with autism, and I am so in love with, and in awe of, my little boy.

With his bears; they make him happier than anything

Photography by http://www.kristinchalmersphoto.com/