Monday, April 22, 2013

we all feel the shut downs at time, especially when our families don't understand...

My mother just hurt me another time. We come from different planets. No; different Whens and Wheres. We just... can't. We can't EVERYTHING. I'm in shutdown at this moment. I ain't able to open my mouth. I only exist through this keyboard, now. I just don't have any body. I don't have nerves, muscles, bones, blood. This reminds my of a novel by Bradbury. Oh, well. Never mind. I'm sorry she's sad now. But I can't speak. I'm not Alice and I'm not there. Bye.

-Alice Bassi

Instruction booklet: heart, body & soul of an Aspie girl-by Alice Bassi

How can the males think to seduce me with their constant, officious and intrusive sexual hints? How could they ever think those hints could ever interest me? If other girls act like bitches, it doesn't mean I'm the same.
Talk to me about stars.
Videogames. Comic strips. Animated cartoons.
You can talk to me about books, films, music. Poetry. Foreign languages. Oh, please, talk with me IN foreign languages. It's so liberating.
You can talk to me about politics. History. Paintings, museums, science, prehistory, animals, biology, chemistry, philosopy, religions (no prejudices, thank you), literature, restaurants, theatres, Russian ballets, even pubs (the decent ones).
Please, teach me something and oh, please, learn something in return.
Don't talk to me about discos, drunks, misleading friends, misleading music, misleading idols. Don't talk to me about misleading politics, misleading values. Instead of speaking with me the language of ignorance, don't talk to me at all! We can be quiet together.
Don't touch me. You have to find the mental hook, the one which is set somewhere between us. That hook will open up my mind and my body. Don't touch me lightly, not even with your thoughts.
Seek me.
If you can't find me, let Ka work on its own. If you don't know what Ka is, read "The Dark Tower" series by Stephen King. You'll understand so much about me.
We can talk together about other worlds, the multiverse, the chances after death (supposing that there are some). Let's discover the world and ourselves in each word.
Please, don't touch me.
Not yet.
Don't make me feel that pain.
An Asperger body is a body without skin.
-Alice Bassi

Wednesday, April 17, 2013

An Undiagnosed Autistic Teenage Girl Fell Through The Cracks... and Survived it.

*Warning: This is a bit heavy* (but it doesn't go into too much nitty gritty compared to actual events.)

I'd ordered my old mental health files, to have them on record. I wanted to study the responses to my teenage (for me that'd be 13-21) reactive behaviours. It's hard to read. It's hard to reflect. It's infuriating. It's agonizing. In fact, it's fucking tragic. I don't have any better words than this, without opening a Pandora's box of cuttingly sharp emotional flooding, here.

It's so true, that if you look between the lines, these are autistic meltdowns. "They" seemed to express some degree of superficial "sympathy" for people hurting and abusing me; including sexually for ..but Gods' sake.. they didn't bother to try and protect me whatsoever. and I was very vulnerable. To look deeper into why this was chronically occurring. No, they didn't. What the hell?? Wake up people! So baffling...

They seem to admit that "this girl cannot help poor judgement, relationship problems" and all this other, imbecilic, seemingly with pity based, or just insulting misdiagnoses.. they just didn't see it. There are hints that they could have, and should have, picked  the reports, things like "seems younger than her age", "childlike demeanor at times", "limited insight", "odd gait", ...but it goes on to say "oh but she has good eye contact" etc..

I had a disability. I was suffering and being abused by others who knew I was easy to abuse. They could have actually been helpful and compassionate to me, but no. They had to make me into some pathalogical criminal, or to-be-pitied stupid little sub-human, instead of a disabled person not fully aware of her actions and going through a really, really rough time. Oh if they were only NOT so blinded by the stereotypical precedents, and they looked a little closer. Just a little closer would have been enough for me. The axis 1 diagnosis was "Adjustment Disorder" because of the pattern of reactions to situations of change...this is highly co occurrs with autism.. but Axis 2 read "Borderline PD"..which is not quite correct, but not surprising.

To a good autism expert, this poor girls' behaviour and recurring challenges would've been obvious, as it would have in childhood. Sure, there were co-morbid mental health conditions that she developed features of, because she didn't get the help she needed, had PTSD, and was constantly being re-triggered. She could've have gotten the help she needed had it been recognized. Instead, she survives by the grace of what must be guardian angels; looking over whispering "we know it's not your fault." I didn't realize (because i'd forgotten) just how bad it was. Shit, it was bad. I haven't wanted to remember. There are flashbacks..a few key details...but much of it is a haze.

I was 19 during the year of the most major crises. They deemed me an adult. I was easily upset, little impulse control, precociously self medicating my (then unrecognized as) sensory issues, adjustment anxieties, social and many other confusions. I had read Rx was well controlled unless I was very upset. By 19 I had already developed bad PTSD from childhood traumas (including immense schoolyard bullying and family hardships) and early adolescent occurrences including a mother with cancer, an abusive partner, poverty, constant changes and a few pretty serious sexual assaults. I couldn't process it I I bottled it up and worked at minimum wage jobs in desperation to earn money. I did as told always but still often failed; my auditory processing re: language input was particularly slowed. I felt stupid, I had to hide it. I got no help. It was up to me. I learned to cope whether it be faking that I understood, being as nice to people a possible (including letting them push me around; but then internalizing anger after, and taking it out on myself) pills for anxiety at times, constant stim walks where nobody could see me, etc..

I began to fall apart at 18. Then 19; a BAD time to get ID. I didn't EVEN know what I was doing if I'd reach that point.. especially due to the bad influences of others practically feeding me booze, and drugs, or Drs feeding me the wrong medications. I would've been much less impulsive starting with an initially clearer mind..because I know myself enough to put the breaks on. but add the anti depressant. I'm not normally, at the baseline, anything but concerned with maintaining control, though the impulse tinkered underneath. But bipolar spectrum disorders are in my family too, and I was pumped full of SSRIs. I lacked impulse control then. Grossly. At times I was full on manic and thus pretty out of control, especially when using substances. It was a dangerous game and I was not driving with a clear, calculated mind, but an impulsive one, in spite of being seen as and accused of the former. They attributed my emotional over-control and flat affect to that, as opposed to being terrified to have a full on autistic meltdown in front of them.

They accused me of attention seeking for abusing medications like DXM cough syrup; I was in extreme pain to the point of wanting to snap, and I was after the DXMs affect of emotional disassociation  - so that I wouldn't melt down. Then sometimes, I'd lose it and OD. They called it Borderline personality, and even worse things, instead of realizing I was a very disturbed and agonized young girl with a genuine development disability, a cut up self esteem from abusers (and actively being abused by people in her life, including sexual exploitation), with severe PTSD, melting down over lack of the right help.

Today, my organs are like a grannies'. Although they're still testing within ranges, they just dont work right, and I feel it. Although they keep telling me that it's EDS related stuff, and maybe autoimmune stuff, I know that although I do have Ehlers-danlos syndrome, I'm this sick also because I am damaged. I am scarred inside. Badly. and the biggest insult of all is this: They accused me of doing it to myself, when in actually; THEY FAILED ME. 

One would not believe the things they wrote about me, when I was suffering. I've read my files, and it is disgusting. When I was hungry and anxious and not in my right mind I begged for food and ativan in the psych ward, they said I was "irritable with a flair of entitlement"... when I begged them, and chanted "I just need help, I just need help" and I was confused, and out of control, and being abused, and not fully understanding how one gets better or how to access resources that might be available to me, they called me "histrionic." Instead of helping me get away from sexual exploitation, they ridiculed me in disgust over it. I will not elaborate further. 

A lot of suppression, disassociation, even self medicating at worked for awhile, and then it went dangerously haywire. I was a trainwreck. I was a Lindsay Lohan, except undiagnosed autistic and poor, with almost no one to really watch my back. By the way, when I was 19, I was mentally 12. Tests prove it, I'm about 7 years behind developmentally. Believe it or now, they pathologized that too! When I tried to access addictions help later, for fear of becoming addicted to opiate pain meds due to my history, and to try to get help and advocacy for a proper evaluation for Ehlers-danlos syndrome- that's when they pelted me with the ultimate character assassination (see here:)

Some of it was to do with them noting me as "very bright and verbally locquascious" in their words, but as if this were an evil thing. Earlier they had said "presents with average intelligence, younger than her age, and childlike demeanor at times" I guess they forgot about the "pervasive development" part here, that when one goes from being mentally 12 (when they saw me the first time) to mentally 19 (the second time) intellectuality might be, oh, just a bit different and one might have more words later??.. Nor did they take into account delayed intellectual development which "spurted" due to getting out of a bad, abusive environment that, once I got away from (abusive family members etc) married and started a life of my own, I was able to develop my character at least better. That's also when the aspergers' started coming out more, when I was away from the acutely traumatic situation. The way I behaved with my new baby was very aspermommy, down to taking advice literally and worrying over it, all with the best intentions.

Furthermore, you would think I would be commended for the strides I made to get better on my own, (and with the help of my husband too) in spite of there anti-help/gross negligence... but instead they somehow pathalogized my delayed maturation, too. They made it out to be like "oooh she was pretending to be dumb, but actually, she's veeeeery intellgent and thus evil!"and, they seemed to do the same thing about my inconsistencies in terms of things I say ie. context and general functioning in terms of language. Though overall I'm precocious with language, it fluctuates; some days I might be really strong, other days I struggle to properly articulate what I need to, and may say things in the wrong context, repeat myself, or ramble. It's a frustrating struggle, and it's cruel to criticize thus piss on it. The latter is often when I'm stressed either emotionally, or physically (sick.)

It just amazes me how these people can even work in psychiatry when they seem to have zero understanding of developmental disabilities, and insultingly lump it in with character disorders. It's abusive. It's dehumanizing... albeit possibly at least partly inadvertent. Regardless, I feel like I want justice. I want these people to first of all take back and realize that the disgusting lense that they've viewed me through is tainted by their own ignorant, un-empathetic, in fact callous, cynicism - and to realize how horrifically they injured me. This is both literally and figuratively. I want justice. But back to the story ..

It wasn't until the introduction of an anti depressant, Effexor XR, that my impulses became so dangerously diminished. Again, I believe and admit that it's also do to with the bipolar diathesis which a psychiatrist diagnosed me with in Vancouver. She said under major stress, SSRI antidepressants, or substance misuse, I can become bipolar (and this is a lot to do, also, what masked my underlying autism.) I cannot, I mean cannot, believe that every one of those doctors who saw me in that ward continued to endorse my use of Effexor XR, a very powerful antidepressant that pretty much ended up making me insane in the end.

It was me, and me alone, who finally figured out I needed to taper off of it. This was partly because I found out I was pregnant. This was a godsend, because I finally "sobered up" after tapering off that mind poisoning garbage drug, and realized "oh my god, what happened for the past year to me - what happened .." On Effexor XR, I had acted dangerously manically, on my autistic-related difficulties with adjusting to adult life. Work, school, dyfunctional family, trying to be independant, in semi autistic meltdown state, with a bipolar diathesis, there is NO place for SSRI's in that. None... and, it's gross negligence, to give it a place.

I have to separate from that girl back then. I only go by my middle name (Rose) now. I have to. I can't be called "Natalie", after all that. I have a hard time hearing my birth name..I need to legally change it, actually. It is almost a miracle that I'm here. That I didn't perish any one of those nights or days....Any one of those being completely inebriated on the back of a motorbike, or any one of those OD and charcoal drinking ER emerg crisis visits.

They branded me with a personality disorder, and superficial pity intertwined with dehumanization, to push me out the door and and intp arms of actually personality disordered, sometimes psychopathic, abusers - when I was a very, very vulnerable person with a developmental disability. When I was just a kid. In "Aspie Time"...I WAS A KID. A child of 12....

and, in February of 2013, when I went back to them for help (stupid idea actually) they had the GALL to suggest that I am one of those people who abused me. That I am a sociopathic personality disordered freak, instead of a divergent human being, who is highly sensitive but traumatized and physically health compromised, thus very emotionally guarded.

I was a kid, with a precociously-too-adult mind compared, and they ignorantly lumped me in with the goony waters of the sociopaths and narcissists. Though there are very surface, and very superficial similarities to this, anyone with even a few ounces of astuteness could see past that, and into what's really wrong. I guess they are shamefully incompetent at their jobs. Well, not all of them, but many of them ..

It was a dangerous paradox in the wrong environments, without any support, with constant changes, constant performance. I just couldn't handle it. I was drowning in a deep, dark, black sea and instead of throwing me a life raft, they pelted me with driftwood.

I didn't cry enough, in front of them. Partly, it was the DXM, and, in my mind then especially, and based on experiences in my childhood (ie. my video "these crocodile tears are real") if you showed who you really are, people demean you and treat you like shit...then if you perform, they demean you passive aggressively and want to you perform more. That's why I'm myself today; regardless of the cons..the pros still outweigh. I have no energy to perform anymore...and hey...It just gets you accused of being some kind of con artist anyway ..

Anyway, this is only the tip of the iceberg. I don't want to cause anyone nausea, and I'm sorry if I already have. I'll save the rest for a book. One day I should write it, but right now, it'd be way too triggering. All I'll say is; I'm lucky and grateful to still be here, though I'm really sick now,  and don't know what the future exactly has in store for me anymore. I don't think about it. I have goals and dreams, and back then I used to dream about the years ahead, and my plans especially to do my music (and once acting, but I don't really care for that anymore for obvious reasons.) Today, I take it week by week. I am an advocate and a survivor.

I'll fight for this to not happen to another girl, or boy for that matter; nor will I stop trying to confirm justice for this one. Gradual justice by my real words, real speech, real writing and real music. Justice. Awareness. Future prevention. This should not happen to anyone else, again.

Everything is real about me, although some people may still refuse to believe that. Oh well. I am real. My situation is real. My trials are real. My feelings are real. I have witnesses. Those who know me will vouch, and God is my witness too. As for the other ignorant, cognitive dissonant toads, let their filthy lense of viewing be their problem. They're the ones who are sick with closed-mindedness. Most will eventually see that I'm most definitely real.

Insidiously autistic women exist. Insidiously autistic people exist. We're real. We're honest and we come by honestly. We're differently wired in bright and unique ways. We will continue to live on; working towards and in fact insisting on accurate acknowledgement, awareness, acceptance, understanding and fair treatment.

... Phewph. This felt so good to finally "get out." Blessed be, so mote it be....

-Rosie Guedes 

Alice, on her relationship with NT parents.

I just ended a veeery long discussion with my parents. I find it very difficult to talk with them. They're both NT and they just... don't reach me. I love them. Really. But sometimes (most of the times) living on this planet is like being among the apes. They're intelligent, yes, but they... oh, it's difficult to say it in English (I'm Italian, unfortunately). They just... don't get it. They ALMOST get it. But not COMPLETELY. It's like talking to someone who's numb, or still asleep. They can go from A to B, but they can't reach C. And I'm... all alone. And the worst part is that they are sure I'M THE ONE who's a step back. It's very hard and frustrating. I can't make them believe the truth. They regret it. This reminds me about a quotation: "For them, I was the one who was insane; for me, they were the ones which were insane. But they - damn it - were a lot more (nd. more people, not more insane)." And now, music. "Make believe, I'm everywhere, leaving in your life, written on the pages - is the answer to a Neverending Story...". -Alice Bassi

Tuesday, April 16, 2013

"Letter of Congratulations, to Polly Davies, March, 2008" (for Julia Utts, and for Quinn Brisben)-A Poem by Scott Norman Rosenthal

"Letter of Congratulations,
      to Polly Davies, March, 2008"
           (for Julia Utts, and for Quinn Brisben)

      1.We all live in History,
in a place called the "World."

My name is Scott,
you don't need to dread.
Not my voice,
or messages
from this part of the World.

It's referred somewhere
in the "Talmud," that:
"...if you've saved a life,
you've saved the World."

2.Once upon a Time,
11 people got arrested,
near a house.
A Judge lived in the house.

200 or so people stood
between a man
and a Death Chamber.
Most of the people went away,
11 chose to "confront".

Word from Counsel said
that we pulled it off.
Jim Bevel did it again.
New reason for a "maverick”,
to be vilified by talk and hypocrisy.
Otherwise, those who didn't "confront",
might be Those Who Ran Away.

I almost left a worthless life,
a muted voice; in the jail,
in the cold...
It wouldn't look bad
for what we were doing.

3.Once upon a Time,
I intruded on an evening.
You provided information,
to get me through corruption,
into the decades,
through the World...
For a Worthless Life,
a Muted Voice...
I won't apologize that intrusion...
we’ve learned better...

I'll congratulate you, Ms.,
for saving the World.

                           (Scott Norman)

"This Is Why We Exist" by Brian Melton

My response to Rose Guedes' latest update and to the hateful commentary that some have posted on a video featuring her child as part of Autism Awareness Day:

When someone asks something ignorant like "Why do people like you exist?," the question is rhetorical. They don't really want an answer. They merely want to harass, humiliate, and terrorize you into submission and silence. They are the most blatant example of the neurotypical compulsion for conformity, and they will say or do anything to make anyone different comply with the NT herd. The mere fact that someone would post such a foul comment on a video that featured a child shows just how low and mean and pathetic and powerless some people are in their own useless lives. Aspies have given this world most of the arts and sciences that it has. We are the reason why, at least in industrialized countries, the life span is around 80, instead of 47 or so as it is in many impoverished countries. Nature didn't care: for most of human history, humans typically died in their twenties. It took geniuses who could think outside of the box (because there never was a damn box) in order to create all of the progress that the Neurotypical dullards enjoy today. Aspies are generally highly sensitive, empathic, creative, loving people who simply want equal rights and justice; as well as a chance to participate in this world without having to hide who they are; but apparently some of the NT's are frightened of our gentleness. It threatens their world and their society with all of its economic injustice, endless war, and environmental devastation. They are terrified of anyone who represents a different way to live as a human being on this planet. Others of the more parasitical variety of NT see our gentleness as weakness, and make the mistake of thinking us easy prey. And some rare few of the NT's may have begun to realize what I recently discovered: the diagnostic tests are getting better, but they still miss more of us than not. There are more of us than any of us realize. We have significant numbers. If we identify and work to establish Aspie culture, much as the Deaf community has a strong, vibrant Deaf culture, then we can organize: we can demand better access to education, employment, and health. We can turn the tide against important issues such as the tar sands and the Keystone XL pipeline. We can stop our continent being flooded with GMO poison. And, we can demand an end to wars that kill thousands more women and children than actual enemies. We could be a blessing way to this world, because we always have been a blessing way to this world. We just have to guide the course of our destiny.

So, what happens when stupid people say stupid things? Great movements sometimes happen, that's what.
-Brian Melton