So, you’ve been diagnosed with autism. Good news. Nothing in your life should actually change. Are you still you? Of course you are. This is just a medical diagnosis that will enable you to get greater access to the care you need. You have a framework that will do you a world of good going forward.
Too bad you have to deal with people who aren’t autistic. To anybody with the condition, it’s obvious we’re dealing with no more limitations than anyone else. But NAs as I’ll call them see it very differently. They see us as hopelessly broken, unsolvable problems. They are going to make your life a living hell.
What follows is a guide to the five stages of grief* as conceived by Elisabeth Kubler-Ross and how they can help you deal with the painful realization you’re about to spend the rest of your life dealing with people who think you’re subhuman based on a diagnosis that scares them so much they’ve resurrected literal plagues. These can be experienced in any order for any period of time but you should expect to see all 5.
You can’t believe it. You’re no different than you were before. Why should people treat you differently? And true the people you know closest to you won’t change their view of you. In fact they probably knew you were autistic long before you did. This article is not about them. It’s about society as a whole. And you’re not going to believe it. You can’t believe autism fears are what drive the anti-vaccination movement even though they are. You can’t believe Sesame Street would choose an organization that fear mongers for advice over actually autistic people. You certainly don’t believe Autism Speaks hates you. I mean look how much money they pump into…well…um talking about it. No, nothing will change. Sadly the only way to pass this stage is to do some reading on autism by NAs who aren’t Steve Silberman or Graeme Simsion and not recognize yourself at all. That’ll send you to:
You’re never going to truly leave this stage. Sorry. You will stay angry even if it fades. So angry. Why? Well you’ll encounter the doctor who tells you you have to make eye contact or never get a job. You’ll discover friends of friends who question if you can live independently. You’ll meet people who will shame you if you can’t. You’ll read a paper from Autism Speaks comparing a child’s autism diagnosis to their death and which talks about them as if they were a problematic pet. Look, you are never going to stop being angry and that’s okay. It actually helps you later on. The hard stage? That’s:
Here is a tricky path. Many of the things you should be doing for you satisfy them. You should be in therapy, definitely. You should be on medication. Not having nightmarish anxiety will floor you. But you must be careful. You are not looking to cure yourself. You can’t. You are you and that’s FINE. ABA? Run from it. You should not do anything that causes you pain just to satisfy NAs. You are not changing to fit into their world. You are trying to be the best you and anything they force on you to make them happy does not count! Because you’re not going to satisfy them, welcome to:
This is permanent too. Sorry. It shouldn’t be. But the weight of the anger you feel over what they say about you and the frustration you feel at being able to make them happy will crush you. You’re going to find a lot of pain having to live on guard that you have to be careful about identifying as autistic just to avoid the terrible comments. It’ll get better with time but only through:
Here is the beauty of the internet. You will discover you aren’t alone. You will find others. You will get support. The most painful thing to happen to you is common to them. You will find that you are normal no matter what you’ve been told. You will see that you have strength. And you will see that truly nothing will stop you anymore than the limitations everyone has regardless of their brain chemistry. Will you always be angry? Yes. Will you always be sad? Yes. But that’s not because of you. It’s because of them. And once you accept that, your life will be a joy.
*Real talk: I love this model. I’ve done extensive research into grief and lived it more than I like. This model is used for parody of Autism Speaks but it is sound.
Thanks to Chris Janisko, Connor Clay, Jason Wells, Lance Rutt and Sebastian Moreno for their support. If you want to see more content like this, support me here.