Theme
11:38am September 18, 2014

danacardinal:

ok one more thing before i go to sleep because im mad

how did no one notice that i was processing shit differently from them when i was younger

why did no one tell me that bright light isnt supposed to give you stomach aches

why did no one tell me that causing more pain to yourself should not make your pain go away

why did no one ever ask me why punching myself in the stomach repeatedly made my stomach stop cramping

why did no one ever tell me that most people dont think the weight of a blanket is more important than the temperature. why did no one tell me that having six blankets on you during the summer because it was the right weight for you wasnt typical

why did people literally describe my neck twitching as a tic and never stop and think that it might be related to autism

why did people describe my vocal stims as tics and still never think it might be related to autism

most importantly why does my mom deny that i showed signs of autism when i was young

On that most importantly part?

I think sometimes parents have trouble seeing something as a “sign of autism” even if they otherwise remember that it happened.

Like… 

There was a time in my life when my mom would say that I didn’t “show signs of poor social skills”.  But then she told me one day, around the same time period, that the nuns at my preschool had called her because I played alone and screamed whenever a kid approached me.

And I honestly think that it had to do with how she conceptualized it.

Like… she remembered the actual things I did.  She remembered being called by the nuns.  She remembered that I would rock my head back and forth as a baby.  Things like that.

But she didn’t conceptualize those as “signs of poor social skills” or “signs of autism”.  So she didn’t always know that these were things she was supposed to mention to my psychiatrist, for instance.  Which makes sense, it’s not like I came with an instruction manual that said “This is what poor social skills look like in a preschool child” or “This is what stimming is, and by the way it’s a sign of autism.”

So a lot of things about my early childhood came out gradually over the years, because I didn’t remember them and my parents didn’t see them as unusual.  That’s the other thing – autism runs so heavily in my family that I honestly think my parents saw a lot of what my brother and I did as normal.  Not everything – and I think they noticed more unusual things about my brother than about me, especially since I was their last kid and they were used to those things by the time I came along.  But they did see a lot of things as normal because either they had done them as kids or their close relatives had done them as kids.

Like my dad’s first words weren’t “mommy” or “daddy”, they were “see the moon”.  Which is very autistic, but for our family that’s our version of normal.

So I think there’s a thing that happens, or two things that happen, with parents of autistic kids, sometimes.

One is that if it runs in the family then autistic traits will be more likely seen as normal.

And the other is that even if the parents remember specific events in the children’s lives that are very very autistic in nature, the parents aren’t necessarily going to conceptualize those events in terms of autism.

So you’ll get parents who say “You showed no signs of autism at all,” but if you sit down and talk to them about actual events in early childhood, they’ll practically list off the diagnostic criteria, or other blatantly autistic stuff.  

I’ve actually heard of this happening a lot with some parents, and I do think it comes down mostly to those two things.  And especially the one where they don’t conceptualize things in terms of autism, or in terms of ideas like “poor social skills”, they just remember what happened, and they don’t filter it through those concepts because they’ve never had to.

This was actually one of the factors in how my diagnosis got changed over the years from PDDNOS/atypical autism to autistic disorder, was simply that we got more information out of my parents in the 4 years between the two diagnoses.  Including stuff about speech regression that was very important but that my parents had never been told it was important so they didn’t know.  There were other reasons for it too, but this was definitely a factor in the diagnosis change.  Because a lot of facts about my early childhood came out in conversations over the years, rather than all at once in one diagnostic interview or something.  And then (at least later on) I would happen to know they were important or related to autism, so I’d relay them to my shrink, and then he’d talk to my parents more.