Archive for the ‘childhood’ Category


when we were younger

December 13, 2012


I got the idea to write this from reading a label on a Lean Cuisine entree………”cocine en alto” which is Spanish for “cook on high”. When we were younger, we used to think that “alto” was a language, because we heard a friend of our housekeeper talking about it……..didn’t realize it meant the vocal part she sang in the church choir. I knew she was from a different country so I thought that her language was called Alto.

We had another post about something very similar. It was about Peter Pan and his pixie cohort Tinkerbell. She was dying because she drank Peter’s medicine that Captain Hook had poisoned. Peter asked people to clap so she would get better. Our out-of-body sister Natalie (Not her real name) and I were sitting on the couch watching, and we clapped because we thought Peter was talking to us. Can’t recall ages now. This was definitely more than fifteen years ago.

We (myself Athena and Andrea; though at the time we didn’t know about plurals and DID or even autism) also had other things we liked to do alone. Weather intrigued us quite a lot, so we would go to our room, close the door and then take out our beads and pretend the floor was a weather map. We put clusters of beads on the ground to denote storms. We made bigger and more circular or spirally clusters to denote hurricanes. We called it weather for The Littles. We don’t mean littles as in “insider children”. We meant small people. Very small people. Like toothpick sized. And invisible too.
We didn’t want anyone else to see what we were doing. This was a long time ago, so I don’t know why. Perhaps it was embarrassment? Not sure. We would often close our door in poor Natalie’s face. Well, not literally but I’m sure it felt like that to her. We wanted that alone time. To enter the world of the Littles and tell them what kind of weather to expect for the day.

It was a ritual that happened almost every day, probably around the same time. We cannot remember now, how long it lasted.

When we closed the door on Natalie, she often cried. That made us more annoyed because of sensory aversion to crying. We probably couldn’t understand why she was crying. It didn’t occur to us that she could be upset about not getting attention from Big Sis.

So, she would retaliate, by closing the door on us. I had no clue the events were related. It didn’t make any sense whatsoever at first. And also, there was a sense of “she is doing it to be mean, but I wasn’t.” We certainly felt that she was bullying us, and didn’t think that she might have felt the same way.

I would get upset at her and hit her or sit on her. I didn’t know how else to behave. I was less than ten at the time. We weren’t diagnosed as autistic until much later (we were almost 22).

We are pleased to report that today our relationship with Natalie is very deep and loving. We lift each other up. She doesn’t have as much time to talk to us as she would like, because of work and her own social life. We are also busy with school, especially at this time (end of semester, preparing for final exams, etc.)

This is one of a few posts we plan to write about our childhood.

Andrea and Athena, collaborative


From diaryofamom: she’s not a baby

November 27, 2012

This may very well rub some autistic self-determination proponents the wrong way. I was taken aback the first time I read it. Some truths are harder to accept than others. 2 positive things to take away from this:

1) this mom didn’t want to write about it or admit it BUT SHE DID BOTH! There will be time to dissect all the “why she may not have wanted to admit it” later on. I don’t know the reasons. They are her reasons. But I think this is a big step for her and her family. I say this as an autistic person myself.

2) Her other daughter, an NT, pointed it out to her. This girl has ally potential already. Key word is POTENTIAL.

Kudos to DiaryOfAMom for fessing up and writing this. That was a huge step. One that should be recognized.


a diary of a mom


I don’t like this post.

In fact I hate it.

Its content is raw and embarrassing.

But I’m publishing it.

Because I think it matters. 


She was right.

Of course she was right.

That’s why it hurt so much.


That’s why I got so defensive when she said it — and tried to pretend that I didn’t know what she meant.

“Mama,” she said, “you don’t have to talk to her like she’s a baby.”


The words hung in the air — thick, accusatory.

My gut reaction was denial.

“I wasn’t, honey.”

It sounded ridiculous. Like I’d just said that the sky wasn’t blue. But look, Katie, my brow is furrowed as though I’m confused, and I’ve even cocked my head to the side for good measure, so I must not know what you mean.

“Mama,” she said, going along with the game,”ask me the same…

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An Anecdote about Caricatures and our Birth Name

November 8, 2012

We were not born with our current system name. When I was born, my parents bestowed the name “Sohini” on me. It means “adorned” or “decorated” or “girl with a pretty face.” It wasn’t really the meaning that I had a problem with, but rather the image the name brought to my mind. That image was the following: a pretty girl sitting by a windowsill or outside in a swinging chair somewhere in India, doing nothing but looking pretty and being subservient to all others. She spoke very little except when spoken to, and did this or that or whatever she was told, without question. She had no formal education. Of course, this is a gross stereotype, but the ones who created this image making it is autistic and was very young when this image was created. The only reason we can think of for creating this image, is so we could have an EXCUSE not to like the name. Looking back on this, several years later, there really was NO rhyme or reason to us creating that image WHATSOEVER. It’s just an interesting bit of our history at this point. Made sense at the time, I guess.

People often make caricatures for ideas, images, words, and people that they don’t like or disagree with for whatever reason. Then, they use these caricatures as “justification” for not liking or agreeing with whatever. This anecdote about our birth name is just one example of that. It happens all too often concerning the disability communities. People have these caricatures of individuals who cannot function independently or whatever the case may be. They think of the words autism or downs syndrome and they have these images in their minds. But we in the disability communities are far more than caricatures! We have emotions, we have passions, we have voices that people need to hear!

Athena and Andrea


Seeing the Sparkle in Autism

October 24, 2012

So I read this post again, not exactly sure why I had marked it for reblogging in the first place. I knew there was something about it that definitely warranted a response, and a positive one at that. Some of it is very difficult to read, namely the parts about being in gloom and doom and the “dark side of autism”. That simply does not exist for many autistic people, our system included. But this is the writing of a parent who is gradually coming to see the light, the great potential. This IS a big moment for her son. Her wording may be objectionable in many aspects (note to author: unfortunately many of us self advocates do find things objectionable about parents’ descriptions of their autistic children at times. But please do not take this necessarily as condemnation. It is just a statement of fact. Just listen and reach out. We have reasons, justified or not, for our “harshness” to parents of autistic children as regards their use of words to describe their children. I will attempt to explain this in a separate post.


I call this moment my “number one reason to love autism moment” because, truly, it was the first.  This was the first time I realized there is some crazy magical stuff inside of autism and just when you think you understand it all, it will knock the wind out of you.  Yeah, in the beginning, autism is every bit of 100% scary and overwhelming and your moments of hiding in the bathtub become more plentiful as you try to hide from the thing you don’t understand and the thing that is slowly taking over your life.  It is either a dark pit to fall into or to pull yourself out of.  In that very beginning, there is no light, there is no positive and, clearly, there is no magic or wonder to be found.  It is mostly black and sopping wet from the tears that seem to be continually clouding…

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RIP Amanda Todd

October 14, 2012

Trigger warning for pictures of self harm at the end, and discussion of suicide and bullying and feeling alone

We are too triggered to write anything more about this right now and we don’t know too many details, but this needs to be seen, and blogged about extensively.



Amanda Todd’s chilling message about bullying


Things I didn’t realize until much later

March 9, 2008

things I didn’t realize until much later:

-people on TV don’t respond to those watching at home. Because they can’t. The show has already been recorded and put on TV. The TV is an inanimate object and the actors on whatever show you’re watching, never see you sitting at home or wherever you might be sitting in front of a television set. I thought of this when I woke up rather late this morning (August 6th, 2006) when I thought of Peter Pan begging unknown people watching that movie to save Tinkerbell, his fairy friend, after she drank his medicine which had been poisoned by Captain Hook. (Here’s a bit of background info about where I was when I thought of this: I had just arrived at the home my family and I would be staying in for about the next two weeks.) Now mind you, this is the non-animated version of the film I am referring to. When he realizes that Tinkerbell has drunk his medicine and is dying as a result of the poison (she drank it to save him from being poisoned.), Peter, played by Mary Martin, says roughly the following, staring up into space, eyes directed as if gazing out of the set at the viewer: “Do you believe in fairies? Please, please believe…. If you believe, simply clap your hands and keep clapping to bring her back.” And then Tinkerbell begins to recover. But how? My sister and I sat on the couch clapping, obviously thinking that it would save her. (This is a memory of something that happened a long, long time ago. I cannot remember how many years ago now, but I don’t think I had hit puberty yet.) I believed for a long time that Tinkerbell survived as a result of our clapping, and held this believe for several years (I think) after that. I’ve never admitted that to people, for several reasons, including not having recalled this event until many years after the fact.

-that I can’t see my own eyes rolling or moving at all when I’m looking at them in the mirror, no matter how closely I look at them. A well-known autistic author mentions a similar experience in one of her books (elaborate if given permission. It was the part about looking at her face in the mirror, thinking it was another person, and then wondering why her face looked away when she looked away from the mirror.) I thought I had something seriously wrong with my eyes, and I also thought I was crazy, and that “everyone else must be able to watch their eyes roll in the mirror! Why not me?”

-that coughing up phlegm meant I had HIV/AIDS or some other terrible sickness. To this day we have no clue what led us to that conclusion, all we know is that we had that fear for a while.

I am sure there are other things related to these, that I have had trouble deciphering at some time or other. Reading Donna Williams’ “Somebody Somewhere,” specifically about her interaction with her friend K. and the mirror, was very vindicating. I realized there wasn’t something horribly wrong with me for not figuring out the above things so long ago.


p.s. I included this in the category of embarrassing things not because I’m embarrassed at any aspect of being autistic, but because at the time I was pretty embarrassed that I couldn’t figure these things out.


The Cemetery Path, et cetera.

July 19, 2006

When I was in the fourth grade, I read a selection from my reader called The Cemetery Path; I can’t remember who wrote it now. The story was about a young Cossack soldier named Ivan, who was very timid all the time. He was in a bar with a bunch of men, who taunted him quite a bit about his extreme fear. One evening, after imbibing quite a lot of vodka, they dared him to go through the cemetery alone, in the dark, and take with him a sword, and stick it into a particular grave. They dared him to do this, because he intentionally avoided the much shorter path home, through this cemetery, because he was terrified of it. I gather, that after a round of drinking, they felt a need to tease him more. I can still remember, 12 years later, how I felt when I was reading that story. I felt very sad for Ivan, because he was a) being teased and bullied relentlessly, and he didn’t do anything to deserve it, and b) he was being forced to do something he did not want to do. Not only did he not want to go through the cemetary, he was DEATHLY AFRAID of doing so(and he did die at the end. He was so intent on getting the damn sword in the grave and getting the fuck out of there, that he ended up putting the sword in THROUGH HIS LONG COAT. He had gotten himself stuck in the place he feared the most. I’m sure many people, especially those not in the mainstream of brain-wiring, can relate to that. He tugged and tugged at his coat, trying to free himself. He was so terrified that he vomited, and choked on it. A truly awful way to die.). In addition to sadness for him, I also felt anger. Anger that people were treating him badly. Anger that he was being forced into a situation. I saw myself in him, because I felt like I was being forced to do things I didn’t want to do, and at that point school was one hell of a confusing place with lots of stimulation. I didn’t fully catch onto the whole school and studying and academics thing until the beginning of fifth grade. But anyway. The story never described him in school, but he certainly was bullied to death (literally) by the other men. I couldn’t really think in such terms in 4th grade, but I know now that I did feel that way. At the same time that I was feeling so intensely over this reading, The whole point of me writing this is the following: many disabled people are being forced into the same position as Ivan from this story. By this I mean that we are forced into doing things we wouldn’t do out of our own volition: taking horrific medications, putting up with “friendly advice” that doesn’t solve our problems (if we have things we consider as problems in the first place) being forcibly isolated and silenced. The people who forced Ivan to go through the cemetery, are in our terms, those therapists and psychiatrists and parents and helpers and “advocates” who make us do things we might not want to do. Like taking medications that may be totally unnecessary and even deletorious to health, going through numerous “therapies” such as ABA and chelation, and a lot of even wackier things that I can’t/don’t want to think of right now.

Some of us have even suffered the same fate as the character in the story, at the hands of others. The men that Ivan was with were responsible for his death, because while they didn’t kill him themselves, they forced him to do something which resulted in his ultimate death. Unfortunately what is happening to some of us is even worse: people are murdering/have murdered others with disabilities.

Dedicated to: the late Katie McCarron, the late Ulysses Stable, and all the others who have been killed at the hands of the very people who were supposed to love and care for them. May they be remembered forever.

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