The other day, I started reading a book recommended to me by a friend. It’s about an autism mom’s journey with her son. And before I could get very far, right there in the preface, she spoke of the poor people who are “taken advantage of” by charlatans who would steal all their money offering them various unapproved therapies and “shots” and blah blah blah.
As a seasoned bio-med mom, I can’t tell you how many times I’ve heard this. Often by people I like and respect. They don’t even know they are being offensive. They don’t even know they are talking about me.
These are folks who tend work within the given system, on things that have been approved and accepted as standard practice by the scientific community.
We personally believe the scientific community is decades behind, and corrupt, so we have forged our own path. Our motto has always been if it isn’t going to hurt, and it has the potential of helping we would give it a try if we could.
What annoys me about people who “feel sorry about those of us being duped” is the superior attitude. The “I know better than you” about your path. The idea that I could be taken advantage of is condescending. I’m not new to town. I have two bachelor’s degrees, one of them in nursing. My husband is a hospital pharmacist(with a chemistry degree before that). We research the hell out of every intervention we try and we often know more than our physicians.
My child was one of the best responders to MB12 shots that our doctor (who people from all over the world brought their children to see) had ever seen. Overnight she went from screaming non-stop to screaming, oh maybe 20% of the time. That little bit right there saved our lives. We think it is cruel to work on behavior only and ignore what may be going on biologically within the child to cause behavior problems. When she felt better, she did better. The shots helped. Many interventions have helped.
Yes, we have spent a fortune on our children over the last decade. They are our priority. Some interventions have not worked, but you know what? It was worth it to try. It was worth it to hope. Many things have worked, and worked quickly to help our kids. Every practitioner had their heart in it. They weren’t hiding behind a curtain greedily rubbing their hands together, waiting to steal our money. (Well, one was but she was a straight up behaviorist with all the credentials, covered by insurance).
Every autism parent I know wonders if there wasn’t something more they could have done to help their child.
I should have worked harder with him when he was two.
I should have got her involved in social skills groups when she was ten.
I shouldn’t let him sit in front of the TV all weekend (or computer), I should make him be more social.
I should have made him use the facilitated communication device.
I should have mainstreamed him.
I shouldn’t have mainstreamed her.
Are parents who “feel sorry” for those of us using bio-med therapies for our kids perhaps suffering a version of this? Is looking at us like we’re some sort of sad sacks that have been duped a way to appease their own what ifs?
Maybe. Maybe not.
Whatever their reasons, I do wish they’d be more careful about expressing broad sweeping pity for parents like me.
We’d all do better to consider the possibility we might be wrong.