10:58pm December 16, 2014

Sometimes family members say things that surprise me.

Sometimes the surprising part is that they said it. Sometimes juts that I missed it all that time. Sometimes a bit of both and more.

Last year, someone was talking to my mom about me and my mom said, “If she had one friend, we considered that a huge success.” By which she meant someone who would come to my house more than once, invite me to theirs more than once, and not just in group settings, and not just because they were a classmate our in my horrible Brownie troop.

Then my mom went into detail about the things she did behind the scenes to orchestrate these friendships with the kids and the parents and stuff.

I had no idea. None.

An example of the other type:

For a long time I was puzzled by discrepancies between my memories and my baby book. My brothers had baby books full of years of interesting things they said. And I always heard stories about their infantile exploits. My baby book had me talking early, then it just cut off, no more notes.

To add to the puzzle, I had detailed memories of being older than that and unable to speak. I even wrote to ANI-L soon after joining asking about the discrepancies, to no avail.

Then I was on a long car trip to Humboldt County for a class project. My mom was driving. She dropped two bombshells. I’m sure to her they weren’t bombshells, just facts, but they reordered my entire self-concept and made me realize I must really be autistic, because these came from someone else, not my wishful thinking. I was 18 years old.

The two revelations:

1. In preschool, I sat and played by myself, but shrieked if any kids tried to approach me. (Except possibly one girl, who two other girls frog-marched up to me and said, “Katy, say I don’t like you.” Katy said she didn’t like me and that was the end of that. Anyone who thinks bullying starts at age right has never been shoved off a tall piece of playground equipment by ten or more preschoolers.)

2. My speech was early, but after a certain amount of words learned, I just stopped. I grunted instead. Like Mary Margaret, who had the same thing happen (speech regression is not as common as pure delay, but it’s hardly uncommon), my parents took me to a doctor, who you told them I was just lazy and if they stirred giving me what I wanted, I would use words again. They tried this and not only didn’t it work, it felt cruel, so they stopped.

I would say I then developed speech in my own way in my own time, but just only a half truth. I became driven to speak, I believe, because of the very early days when my parents took the advice of the doctors. I don’t blame my parents. They were following the advice of the same msn who helped our family in many ways, who was an authority figure and thus shipped to be listened to.

Autism wasn’t on the radar and, if done according to the criteria back then, I’d have either legit qualified for a PDD dx, or I would have run inti an uninformed enough doctor to think I was socially unresponsive to everyone around me, and dx me with infantile autism. That happened a lot: resesrch has since shown that our total unresponsiveness was all in the minds of professionals, who saw only what they expected to see (a perceptual deficit that happens to everyone but happens more to neurotypicals than auties).

But it was gratifying to know that my memories of being unable to speak, were real. Memory is malleable after all. But I have an astoundingly accurate memory for things that happened before the age of four. And usually if a memory is strong and detailed it turns out to be correct. Of course many memories from back then are unverifiable because my sensory system was so unique. I remember what Donna calls “mapping pattern form and feel”, and anyone not doing the same might have no clue what I meant. Also, like Birger Sellin, I sometimes find it easier to say what was going on inside rather than outside my head.

Anyway, she brought those things up spontaneously with no prompting from me. Which was also a relief because shorn out on the spot, people can say things they don’t mean. Before that, all I’d heard was"you screamed at the nuns in preschool,“ which seemed ordinary enough I didn’t think about it much.

Screaming whenever approached by children however, is both quite autistic, and unexpected in that I didn’t usually show enough agency socially to push peels away. Hugs felt like being smothered but instead of stiffening up, I molded myself to my mom’s body. My brother stiffened up. Both are common autistic responses but my brother always had more agency. He could approach peddle or avoid them. I was the rarest social type, passive, meaning I could rarely either initiate social conflict nor turn away from it. I grew up jealous of this mysterious power people had, to approach or avoid. To choose. I only had it for fleeting instances and had no control over it.

So I almost want to congratulate 3-4-year-old Mandy, for being able to scream sometimes.

My mother never got to see me scream when approached. The teachers called her in a to observe. I was wiggling my fingers. She wiggled hers back the same. And we had a great day, wiggling our fingers back and forth. It’s still our signal to each other.

I love when family members incorporate stimmimg into communication. There’s a whole expensive and grueling program that basically is about parents earning their children’s trust by stimmimg along with them. I can see why it works sometimes, but I don’t agree with the intensity of the program or the cult-like atmosphere, nor the sense that they only "accept” their children conditionally on becoming led autistic, such is false acceptance.