I thought I had written a blog entry about this topic already. I looked around, though, and all I could find were things that touched on the topic without making it the main point of the entry. So here, I am writing about how other people think about regression.
Before I get started, I want to point out that non-autistic people do things that, were they autistic, would probably get called regression. They lose the ability to make and discriminate certain differences in sound, an ability I never lost. They lose the ability to discriminate between non-human faces. This is considered a necessary part of their development. When autistic people lose abilities or appear to do so, the reason it gets called regression is not because we are losing abilities, but because the abilities we are (or appear to be) losing are ones that are very important to the people who get to define what is and isn’t regression.
But there’s something that happens to autistic people, when we change in certain ways.
Other people have an imaginary version of us in their head. That imaginary version of us grows along with what they have imagined up about how non-autistic people grow. That imaginary version, that ghost, grows right alongside the autistic child. But it is a ghost, and it is imaginary, it is not a real person.
I have undergone two major periods of drastic change in my life, that most people would label regression. I believe those periods to be not only not what people thought they were, but important and essential periods of growth. I was growing forwards, not backwards. But nobody could see the trajectory.
The result of this is that most people had formed ghost-images of who they thought I was and would become, in their heads. Some of them loved these ghosts with all their hearts. When they talked about wanting the real person back, they were talking about wanting me to mirror the ghosts.
But I am not a ghost. I am a flesh and blood human being. My growth does not change just because some of the people that know me have ghosts in their heads.
Many people experience this phenomenon, to a degree, when they merely make decisions that are different from what their loved ones want. Imagine for a moment that it’s not a decision, it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be.
Then someone says, “I want the old you back. I want the real you back.”
Now certainly who I really was in the worst of the professional days was not who the professionals saw me as. There was a lot that people did not see about me. But who I really was was also not the ghost in my loved ones’ minds.
“I want the real you back” prompts the questions, “Do you know me? Would you love me if you found out this is the real me? Aren’t you supposed to love who I am, not who you imagine?”
Before anyone lashes out at me about that, those are just the natural sorts of thoughts that will flash through the head of many people whose loved ones are trying their best to rescue them from being who they are. Whether you do the things that frequently create those thoughts is entirely up to you.
By the way, this is even true of changes that are traditionally viewed as very negative. I have known of many people who, after brain damage, have all their friends say they want them to be the person they were before the brain damage. It doesn’t happen. It’s not real. It hurts them. It’s not that they wanted to get knocked on the head, it’s that who they are now happens to be a person who got knocked on the head, not the imaginary person that didn’t.
I happen to view the changes that have happened in my life as, mostly, different than getting knocked on the head. I would do them all over the same way, with one exception: I would have rather the people around me had not spent so much time referring to “progress” when I became more as they wanted, and “backsliding” or “regression” when I became less as they wanted, I would have rather not been set the impossible task of being someone I could never be, I would have rather never heard “I’m seeing a bit of the old Amanda” or “I want the old Amanda back”.
That can’t change. I don’t want apologies or discussions on the topic from people who were there at the time for me. It’s done. I’d rather not think about it, frankly. But I am writing this for the people who have the power to change that for their loved ones, right now, or who will in the future. That, rather than silly attempts to change the past, is what I’m after.
Also try to remember that some things you think you see in autistic people aren’t going to be true. Absence of certain behavior does not always mean absence of a loving nature, absence of understanding of certain things, etc. (I still get regularly accused of heartlessness, nothing could be further from the truth.) And what you view as your ordinary child being missing and stolen… no.
Now, after writing this, I see that I have written a few things about this on my other blog.
See: