As a parent the road through autism is daunting in the beginning. It goes something like this:
You are on a train heading down the tracks and you see that something isn’t right. You can’t tell if it’s the track that’s wrong, the train is moving too slow or the surrounding landscape is foreign. You just know this doesn’t feel right and you aren’t in control of it. You wonder if you did something when you pushed that button in your cabin quarters. As the train chugs down the track it’s zigzagging all over the place and now there’s smoke coming out of the engine room. It’s clear something’s wrong. You just don’t know what to do about it. You struggle with guilt. Maybe this is your fault for choosing to take a trip this time of year. You call the train engineer and point out the problem, but he says it’s fine. It will stop, it’s just stalled a bit but it will get back on track. You go back to your seat, biting your nails, hoping he’s right, but your gut knows he’s not.
You near the next station and the train is supposed to stop, but instead it veers off one of the changing tracks and heads the other direction. Now the smoke is pluming out of the engine room and you feel the train is shaking and rattling more than it was before. You pull out your iPhone and start looking up problems with trains on the internet. You find a train model called The Autism Rail 2000. As you read the details of the Autism Rail 2000, you see the problems this train has. Its known to have any of the following: rattling, shaking, pluming smoke, random track changes, missing stops and so on.
Now you know that there really is something wrong, you’re on the wrong train. This isn’t the train you bought a ticket for. You purchased your ticket for the Neurotypical Express. Not the Autism Rail 2000. How did this happen? You were sure you bought the right tickets. You double checked the order, you verified your train trip before you left the house. You call the conductor over to point out the error in your ticket. You ask to be dropped at the next station to pick up the Neurotypical Express. He tells you “sorry, no exchanges ma’am”. You’re heart sinks and you are confused.
Now you try to reach out to other passengers and train personnel for answers. Some of them have been on the Autism Rail a long time. Others are confused and new like you are. You all convince the engineer to take the train to the next stop where there is a locomotive mechanic. You hope he can fix this train, or at least put you on the Neurotypical Express. When you arrive at the station the mechanic asks what the problem is. You tell him and he shrugs his shoulders and says ” Sorry ma’am that’s how the Autism Rail was built, there’s nothing I can do to fix this train”. You might try the specialized locomotive mechanic, he works on Autism Rail 2000’s.
You and the other passengers have a glimmer of hope that maybe this specialist can fix the train. However, when he comes out to see the train he tells you it’s going to cost a lot of money. Don’t worry he takes credit cards. You and the other passengers dip into your wallets and purses to scrape together what money you can find in hopes it’s enough for this mechanic to fix up the train.
Finally, you pay him and he goes and looks in the engine room. He kicks the wheels a bit, test the horn and says “well it is an Autism Rail 2000. They haven’t made too many of these. They don’t always run properly and sometimes they need a lot of extra care”. Eagerly you question him to see if there is any care that will help. The mechanic hands you a long list of parts and a special fuel that he says will make the train work better, but you have to buy these and replace them every month. And he tells you even if you do that, “It won’t be a Neurotypical Express, ma’am. It’s going to run slower, and need more care. There’s really nothing you can do to make this train like the Neurotypical Express”.
He tells you, you’re just going to have to accept that this little engine will never be like the rest.
This is the rail many parents stay on.
But not me, I got back on the train and I talked to the people who had been riding it longer. I asked them what really does help the train to run better and can I fix the train? I knew that other trains could improve, even when the Neurotypical Express broke, it could be fixed. So why not fix the Autism Rail 2000 I had?
While this entire story is an analogy. It’s how it goes. We suspect there is something atypical about our child. We are told by others that it’s fine. We get more evidence that it’s not fine. We find ourselves confused. We starting wondering if we did something wrong. We seek help but are told there isn’t any. Some of us accept that and do nothing further. Some of us fight and seek answers.
I sought answers.