How I (Just) Survived the Pre-Diagnosis Stage

Michael just before diagnosis

My first response when I suspected my little boy had autism, was to read and read and read. Mostly it was read and discard, because there are more conspiracy theories about autism than there are about the moon landing, UFOs, and Barack Obama’s birth certificate, all put together.

Let me explain a little bit here. If you are a typical parent of a child on the spectrum, you are in absolute despair for the first six months. You are thinking things like ‘I wish I had gotten some horrible disease but he was ok’, ‘why did this happen to me?’, ‘life is so unfair’. If you are a mum, the usual dose of mum-guilt that weighs you down on a good day, is multiplied into infinity. You are analyzing everything you have ever eaten both before you got pregnant, during and after. You think of every time you worked later than you should have, ever year you are over 30, every multivitamin you didn’t take, and every time you rocked your baby a bit harder than strictly necessary when he was irritating the living begeezus out of you and wouldn’t stop crying. Every time you wished he would just go to sleep and wished you’d never had children. Every time you didn’t react immediately when she asked for your attention. Every time you let him cry, especially during sleep training. Basically every time you acted like a human being is brought up and dissected by a brain that is, at this stage, pretty much trying to indict you for murder. Unfortunately this is your own brain and in the absence of a mechanism for tearing it out and leaving it in a drawer for a few months, you just have to live with this.

Is this out of proportion to reality? Of course it is. Your child is not dying. She does not have cancer. It is not a broken bond due to the fact that you put them into daycare early or went back to work or that time you said they couldn’t have a fifth jellybean. But in the first six months your rational mind hides under the bed and leaves the field clear for the scary brain prosecutor that every parent has.

At the same time you read the theories that abound about autism.

On the one hand are the scientific ones. No single cause, very genetic, a number of treatments that can help, no cure, lots of long words. Videos of teenagers running into walls, over and over. Hundreds of therapies that you had never heard of. Very expensive therapies that involve a lot of hours and have no guarantee of working. Something about the gut.

On the other hand are the pseudoscientific ones. They talk about a broken bond, about long chemical terms, and some of them overlap with the ones mentioned above. They promise a cure, they have happy smiling children hugging their parents. They involve simply giving your child the correct vitamins, cutting out bad food groups, gluten, casein, the list goes on. There’s some confusing things about vaccines that seem to make sense – you’ve always felt uncomfortable putting those chemicals into your child.

The one thing you read everywhere is about the importance of early intervention and how you must start as soon as you can, preferably last year. You have to take all this information, process it, and decide FAST. The decision you make for your child, and the things you do with them, TODAY, will affect the rest of their life.

Facebook Comments
#, #, #