Archive for the ‘frustration’ Category

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From Guilt to Acceptance of a Smaller Role in Autistic Advocacy

February 21, 2013

So we have been dealing with many guilty and unhappy feelings lately. Let me be clear first: NO OTHER AUTISTIC SELF ADVOCATES ARE IN ANY WAY RESPONSIBLE FOR OUR FEELINGS. We haven’t, fortunately, read any posts by any advocates we know, that suggest that autistic people who aren’t involved heavily in self advocacy are bad people or not serious about wanting better representation in society. We haven’t been more involved in advocacy for several reasons. We are currently in school pursuing a bachelor of arts degree in mathematics. We have had many difficulties in school which are mostly unrelated to subject matter. Though this semester, we have had trouble with some of that as well.

These guilty feelings are doing absolutely NOTHING to help us. Well duh. They are directly NEGATIVELY affecting our concentration. They pervade our waking thoughts (not all the time, but even a few times is too many!). They are unwanted intruders.

We feel guilty about having arrived late on the scene of autistic self advocacy. This is true mainly because prior to our diagnosis, we had no contacts with self advocates, nor any occasions to learn about the movement. Had we known, we probably would have tried to get involved sooner.

Again, we must reiterate our prior assertion that NONE OF OUR GUILT SHOULD BE BLAMED ON ANY OTHER AUTISTIC SELF ADVOCATE! Our current life circumstances (primarily being in college) mean we don’t have as much time or energy to dedicate to advocacy. We just have to embrace a less visible, but no less important and significant and MEANINGFUL role in the process.
There will ALWAYS be a need for advocacy in the autistic community.
Our advice to anyone feeling a similar sense of guilt,

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when we were younger

December 13, 2012

*TRIGGER WARNING FOR BRIEF MENTION OF PHYSICAL VIOLENCE NEAR THE END OF THE POST*

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

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I love my family. But…

November 13, 2012

I love my family BUT….they can be too critical. They can be very impatient. They don’t respect the boundaries of the fortress (well that’s because they don’t know it exists in the first place. It is that way for a reason. More than one reason in fact.) I don’t think they’d respect those boundaries even if they were aware of them, and actually it would be even worse for my privacy if they did know about them. Our mother has a tendency to make assumptions about our abilities based on inadequate information (we can’t or won’t explain fully what’s going on.) For example when I say to her “gee, this math is really hard,” she might say something like “well, you know, nobody is FORCING you to do it, you can do something else!”

This drives us nuts! And what drives us even MORE nuts (and makes us anxious and unable to fully disclose or even halfway disclose all of our struggles) is that when we DO open up about certain difficulties we have, for example going to sleep at a decent time, which we do understand is important, mom says something like “well then maybe you shouldn’t be worrying about college right now.”

That drives us absolutely bonkers.

Here’s another thing that drives us nuts. When we were living at home, and not in school, Mom wanted us out of bed by 8:30 in the morning when we had no reason to be up at that time. She expected us to do this without fail. Then she would give us chores to do. Which wasn’t a problem really as we were living there rent-free. The idea of waking up at a certain time every day in the morning is actually an idea that we can embrace! But the manner in which she finger-wagged and something in her tone made us instantly averse to it.

In fact this has been a common occurrence with our family and our mom in particular. She is often correct in her assertion that we should do things this way or that way, and her advice is not wrong. But the HUGE PROBLEM is with the MANNER IN WHICH she gives said advice. We aren’t sure how much our averseness to it has to do with our particular neurology and how much of it has to do with the parent versus adult child dynamic. Things like tone and body posture and yelling really get in our way of being able to listen to and make proper judgments on the merits of her suggestions. Another major issue is that we cannot articulate in the moment, why we cannot or will not follow her advice, because of all the vibes getting in the way and feeling put under a microscope. It’s very difficult to come up with a concrete example of what we’re talking about here, but if we do manage to come up with one we will write it up in a separate post and link to it.

All that said, we do love our family.

Ivan

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Recalling an Instance of Extreme Sensory Overload on Vacation

October 18, 2012

I’m one of three autistic members sharing a body.

Being autistic, I often have problems with sensory overload. Loud noise, lots of stuff going on at once….lots of movement, trying to listen to someone and do something else at the same time……it’s hard. And sometimes I exhibit behaviour that is disturbing to others. This happened recently on vacation overseas. I was very overwhelmed already the last full day of vacation, and to top it all off, there was an entire table of noisy kids in the dining hall where I was eating with my family and a couple of our relatives. I sort of threw a fit….after being told several times to go get food, I got up, STOMPED over to the buffet, picked up a plate, walked over to the noodle bin, and took out a huge scoop and slapped them onto my plate in a huff. Then I turned around, STOMPED past where my family was sitting, reached the exit, yelled something to the effect of “finally some peace and QUIET!”, and ran off to find a table far enough away from the dining hall, outside. Then I cried. I was overloaded, disgusted, embarrassed, irritated, all at once.

And then the criticism came. I come from a family of neurotypicals. People who do not have outbursts after the age of 5 just because of loud noises. Basically that’s what my mother told me, that I acted like a young child when I glared at the noisy children and stormed out of the room. This event happened about three years ago, and I can still feel a lump in my throat as I finish writing this post. I can feel the pain in my head and my ears from the auditory assault I faced from the table full of children. I can feel the anxiety spiking. It was through the roof on that evening. I almost feel like crying right now while writing this. I couldn’t possibly think about how my actions would appear to anyone else in the dining area. This was at a hotel in Ladakh, which is a region of the state of Jammu and Kashmir, in extreme Northern India.

I already had a feeling that the criticism would come but I still couldn’t prepare myself for it. All I was able to think about that evening was making sure I remembered to grab food and then GETTING THE HELL OUT OF THERE. AS QUICKLY AS POSSIBLE. I was in tears because I was humiliated. I shouldn’t have been but I was. Probably because we have all grown up learning and hearing that grownups don’t behave like that. Ever. If they do then clearly something is wrong. Well, that much was TRUE! Something was VERY WRONG that night. My ears and brain were brutally violated! But in the neurotypical world that sort of thing doesn’t seem to count.

This is still very difficult for me to think about even 3 years later.

Parents, siblings, relatives, family friends: the next time your autistic child/adult/sibling/relative has a meltdown on vacation, please do consider possible triggers for those meltdowns. Try not to project your feelings of exasperation onto the autistic person. Chances are they are probably feeling poorly enough about the situation as it is. I know I was. I have learned to become pretty hardy over years of action-packed vacations. But we all have our breaking points.
Athena

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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.

NOTE: COMMENTS THAT ATTACK THE CHARACTER OF THIS VICTIM WILL NOT BE TOLERATED.

BULLYING IS NEVER OKAY. PERIOD.

Amanda Todd’s chilling message about bullying

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Heated debate with family members

October 14, 2012

I was talking to my sister and mother about autism. Heated debate, ugh, got frustrated. They don’t understand about autism rights. Mom told me that the websites I visit for the real truth about autism, may not be true after all. I think I would know better, thank her very much.

This happened many months ago, and we cannot even really remember at all what exactly the content of the discussion was, except what was written above as a draft. I am pretty sure this is a common theme in the disability community; heated debates with nondisabled family members about advocacy related things. They think they know us better than we do! How many people have been told at some point in life, by family or relatives, that the time spent online seeking out POSITIVE writing about xyr disability, or positive advocacy, is wasted time?

Collaborative, Andrea and Athena

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Reflecting on the negatives at the most inopportune times

October 13, 2012

How many people reading have ever been really upset about something or other, and then suddenly remembered all of the stupid, embarrassing, or upsetting things that they ever said or did, or had others say or do to them?

Funny how that tends to happen, at least to us, when we’re already down or anxious.

ETA: it’s not really all that surprising to us. When we are in a negative thought pattern, it attracts more negative thoughts, like recalling all the stupid things we have ever said or done.

Which can make the negative thought spiral feed on itself and get worse and worse. Which can in turn affect one’s outward disposition, in ways that other people may pick up on. This may lead to less productivity at work or in school; which would be reasons for others to pick up on it. Those others may comment on it, which could lead to even more worsening of the cycle, because the last thing many of us need or want to hear when we are already feeling/thinking poorly about ourselves, is others’ criticism.

Ivan

Andrea chiming in- what Ivan wrote is indeed a complete thought, but I wonder if this sort of thing is “worse” for young adults with disabilities, than the general population. This happens to everyone at some point after all.

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