Tuesday, November 1, 2016

Autistic Speaking Day I'm just going to be me

growing up I spent years learning very hard how to blend in, and yeah I largely failed at it, it seems  but still there are parts of me I blocked up and away  to try to blend, like shimming, I stim, a fair bit less than I did when I was little (though I am told I still stim a lot) adapting my communication and other things,


Blending in is not my goal 

I just want to be me 

I'm tired of trying to fit into everyone's boxes of how they think I /should be,  

Everyone has these expectation 

Either I must be or try to seem non disabled and I must be this (fill in chain of behaviors social skills, likes and dislikes, ways of communicating subjects of interest leaguer activities and interacting here) way to fit in to blend (said way burns out all spoons and is not achievable at all even with my best effort put forward )


I need to be autistic and disabled in exactly /this/ way (fill in arbitrary random expectation of what people expect me to be like and my life line to have looked like as a white autistic CIs disabled female) to have my current needs communication needs/style validated 

If your a certain age you can't like xyz 

If your disabled you can't like (fill in arbitrary things here)

I'm tired of having things that I have learned, skills I have gained relationships in my life and other things used as ways to invalidate my disabilities,

Growing up I went through a phase where I worked hard to blend because I was told and I believed it was the right thing to do, that how I would be successful, happy so I gave it my alll and when this stage hit I sort of failed in horrid ways  it was a mess,  i also wasn't able to properly figure out where and how and that's way to much to write about the day after Samhain, I mostly just stood out a lot more and looked a lot weirder,.....and then I started a weird mix of trying to pass harder while not caring and embracing being the weird one,

I'm still the weird one, the strange one and I embrace that  but I no longer want to burn my spoons to try and pass, I just want to be me,  I'm now learning to accept myself, and my limitations,  and that it's ok to use support  and do things in ways that I prefer and that work better for me.

That doesn't mean I'm backsliding 

That doesn't mean I'm faking 

That doesn't mean I'm trying to be deceptive 

That doesn't mean I'm lazy 

It just means I want to find and do what's right for me 

I just want to be me 

I am going to do what works for me, when anyone else does that it's considered a life skill, many times people find tricks and short cuts that work for them and help them and they are seen as adaptive and unique and resourceful, and everyone is encouraged to embrace themselves and be who they are unless who you are is autistic, then you are encouraged to blend and those things that might help you or things that are useful to you that might be seen as creative in a non autistic and be famous on Pinterest, is now a seen as a nusaaunce accomidation and something you should adapt passed needing, and if you do  for a little while then  your expected to be able to all the time.But here is the thing that's not how our brains work, if we can sometimes manage with out a support that doesn't mean we no longer need or will benefit from it.

And I'm tired of it all

Everyone else is allowed to be themselves, and I just want to be me, and that's what I'm going to do, because I can't afford to burn spoons on pretending to not be me, 

So I'm going to stim 

I'm going to communicate in the way that works best for me (AAC)

I'm going to use visual supports

I'm going to rely on the services I need

I'm going to enjoy my souixie and the banshees, London after midnight, the cure, mission U.K., switch blade symphony,as well as non post punk bands and some metal 

I'm going to switch between black clothes with reds greens and purples and earphones 

I'm still going to carry my pikachu in my backpack 

I'm going to swim and hike and go play at the park and do things I like 

I'm going to study geailge (Irish) and build an Irish vocabulary in my AAC app 

I'm going to hopelfully onday again partner with and use a service dog 

I am Autistic 

I am neurodivergent 

I'm just going to be me and these things are parts of me.

I've never fit into anyone's boxes perfectly ever and I'm not going to 

I'm just going to be me

Wednesday, June 1, 2016

The actual Autism crisis

TW all the trigger warnings an.iesm, death abuse, and pretty much everything 

           There is a very real and serious Autism crisis

Yes we do have and Autism crisis and it seems t be an invasive epidemic world wide! But it's not what you think! 

The crisis isn't about "the rise in autism rates," something that is largely do to more awareness and understanding about Autism 

No the crisis  is invasive, frightening and dangerous 

The Autism crisis is....

Am invasive lack of presumption of competence especially when we do not have or use verbal communication or when our verbal communication is deemed poor

It's the assumption that those who do use verbal speech need few or even no supports at all,  and the reality their needs are often over looked, ignored and rarely accommodated

autistic communication rights are ignored, before we can have access to a full comprehensive AAC system we are often told to "prove it low tech first," when we don't use AAC 100 percent perfect right off that bay we are said to be in interested, many alternative communication methods are viewed as "con traversal and even when we are clearly typing on our own either the authenticity of out words or that of our diagnosis are called into question

The communication support needs of autistics with decent to excellent verbal skills is overlooked and ignored entirely

The fact that communication and verbal skills are seen as binary concepts

The fact that access to communication AIDS and a variety of methods of non speech based communication methods isn't seen as a basic human right for us,

The fact that people assume we don't communicate if we can't use or don't use verbal speech or an AAC 

The fact we have to remind people behavior is communication 

That children are expected to spend 40 plus hours a week in therapies designed to try to make us  indistinguishable from our peers or as normal as possible while also getting other therapies and being expected to also go to school, childhoods stolen in hopes of making us seem normal 

A growing number of dangerous and experimental treatments and abusiveAnd therapies in hopes of curing us, many of which would be considered child abuse with a non autistic child, prominent example is mms (mini ale mineral solution aka bleach fed to children and administered though enimmas  

The fact that autistic friendly therapies are not seen as a priority and learning to pass as normal is even at the detriment of the autistic individual

The fact RPM isn't more widely available and I'm not sure if insurance will even cover it

The fact that stim suppression is considered a training goal even though stimming is critical for many of us

The fact that essentially dog training techniques are used as therapies on us to train us to act normal.

The fact there are therapy goals at teaching us to play "the right way" (aka the non Autstic way)

The fact it's seen as acceptable to talk about us like we aren't Ben there when we are next to you!

The. Fact that proper clump comorbidy in with being part of autism and don't look at them separately as additional things we have to deal with,

The fact that organizations that claim to represent while ignoring us when we say something is harmful and they will try to silence us and claim to speak for us while shutting us out, spreading fear and stigma. 

It's the attitudes that murdering us is some how mercy, while our killers often parents and care givers  are painted as victims and us the undo burden who they had to endure,  our support needs and challenges are used to justify our murders,  that when we are murdered the reports aren't about how it is an unspeakable act of cold blooded murder but rather about the struggles of our killers, 

The fact society seems to send them message we and our loved ones are better off if we were never born or if we are dead

The fact that we have to fight for our basic human rights and those are often ignored.

The fact that parents showing videos of us at our worst  to "educate" by posting about how hard and horrible autism makes their lives is seen as acceptable and our dignity and privacy not being valued especially in the face of parents talking about their suffering

The fact parents suffering matters more then the Barrie's that we face due to ableism and a societies attitudes about us

The pervasive use of functioning labels that paint an inaccurate picture about an autistic individual and our needs, capabilities and assets, 

The using of functioning labels to silence and function shame autistics 

The fact that being able to type is used against us to invalidate out voices especially if we type well (spoiler how well we type tells you nothing about what challenges, daily struggle S or impairments we have)

The fact that any small success or having certain life skills even if they are not as important as ones we struggle with is s used against  us to silence us 

The fact that functioning shaming is a thing 

The voices of Parents " professionals and organizations being valued over those of actually Autistic people 

The mere fact an autistic person can disagree with something or say "wow that's harmful," or "how would you feel if that was up you," to things like meltdowns p or personal care things being put out on the Internet for the world to see and 100 parents will jump in and attack or harass the autistic person, really all an autistic person needs do is disagree with the something posted by a parent, org or a non autistic and they get attacked.

The fact that there are amazing parents and family members out there who work to lift up Autistic voice, support neurodiversity fight for presumtion of comptenence fight agaisnst all the issues on this list to better the lives of their children and loved ones only to also be dismissed and told they have it easy and clearly don't know what "real autism is,'

this whole "this is real autism," thing often used by people who feel autism isn't being portrayed right often used as an attack on what they see as ?to happy a depiction" and ignoring the fact that autism is complex.

Autstic adults and children are constantly exposed to hearing terms like "burden," "crisis" "Broken," "lost," damaged and "trapped" in reference to us and being autistic and this is seen as ok while "valued," "competent," "life worth living," "being seen as a whole person," and any discussion of acceptance and understanding is seen as"glorifying autism," controversial and radical 

The fact that people take offense to the Neurodiversity movement that basically say different neurology and disability is part of human experience, disabled people and people with different neurologist have a right to our basic rights, understanding  supports we need and acceptance for who we are and it's ok to have different neurological make up and to have disabilities what ever they may be it doesn't take away from our value as a person

The insistence one use of mental age

The idea IQ test accurately determine anything really.

The fact that most of the funding for autism goes into studies about causes, prevention and prenatal testing instead of into studies on what services and community supports are most beneficial to autistics, to adult services and community support or to services for adults

The fact that April is often a traumatic time for Autistics as we are looded with harmful awareness adds that stigmatize us, stories of our peers treating us as humans and being praised for it and inspiration porn, and of coarse lets not forget the light it up blue which is a giant add for autism speaks that  the autistic community has addressed as harmful and is the center of a massive boycott,

The fact that the autistic run and founded events in April for acceptance and understanding such red instead, the blog challenge, and a variety of alternatives to light it up blue are generally ignored drowned out by the things lifted above

The fact that services and supports for autistic adults especially in community supports are rare and hard to find 
The fact most services cut off at 22

The fact most organizations providing service dogs for Autistics will not train them for adults and many are either scam or well intentioned but promoting and using practices/tasks such as tethering that are highly dangerous to both dog and he autistic individual. Even though there are a variety of tasks  that guide and hearing dogs perform that can really help mitigate and manage sensory processing issues.

The fact that poor families, families of color and minorities and females are less likely to receive an autism diagnosis and the gender and cultural biases in the diagnostics and the autism field

The fact most people think of autism they depict a white male child often sad looking

The fact that even though every other disability community has pretty much realized  negative awareness techniques and using pitty to get funds was wrong and damaging so they did away with it like in the 60s or 70s (it's 2 am I don't have the exact date more the spoons to look it up) up yet this is the main way fundraising is done in the autism community 

The fact that electro shock is seen as a reasonable way to treat autism and is just reaching the fear in hopes of having it banned as I humane in the year 2016! Please FDA ban aversive shock therapy!

The fact sensory issues are rarely taken seriously 

The fact that non autistics are praised for treating us like people

The fact we have to fight to be seen as humans 

The fact that passing means our diagnosis is devalued and not means we are denied  out autonomy 

The fact that our sexuality is ignored

the fact that we spend hours in compliance training

the fact that having emotions such as anger, frustration and being upset while normal for everyone else is seen as being defiant and uncooperative,

The fact that autistic is used as an insult now by some

The fact that use of autistic is ignored and even painted are therapy 

The fact that when autistic choose to use identity first non autistic people correct us and tell us how to talk about ourselves and insist we use person first.

The fact we are often given little to no autonomy 

The rampant infantalization of autistics

The fact doctors still tell parents if we don't do X by age 5 we never will 

The fact that the entire focus is to make us normal and not to accommodate us and help us grow with our strengths

The fact you can be denied an organ transplant because you are Autistic

the practice of forcing eye contact

The fact that the world tells us it's better we pass and burn ourselves out completely then we seem even a bit Autistic

The fact that our accommodations and needs aren't taken seriously and are often treated as not real or a burden

The fact that we are seen as tragedies not people 

The fact it's 2-3:30 am  and I can rattle these off the top of my head despite being half awake!

I know I am missing so many more!

This is the real Autism crisis

 The real Autism crisis is how society treats us the Autism crisis is Ableism!

this is a crisis we must address and needs to be dealt with!

this is the Autism crisis Autistics face everydaay!

Image description white Germany Shepard wrappers in 2 blankets laying on a brown leather couch with head  on a white pillow dangling back over the side of the couch

Monday, April 25, 2016

nightmares in grief.

   I dreamt about her again last night, this time i dreamed she ot loose and as it by a car before running off and vanishing, only to be found in our yard hours later in the dark, laying there breathing slowly dyingt taking her last breaths as i ran to her to old her only to have her lick my hand one last time before she passed, ever since nim died I have had dreams like this regularly  each one is different but each time she dies or s dying and is often unable to stand or get up that part makes sense she could no longer stand or get up on her own our last day with  her. I don't know what else to say here but i miss her.

Nightmares are  pretty normal experience in general though they have always been a bit odd in how i have them. Ever since I can remember I have had very vivid, graphic and detailed nightmares often they varied in topic.  they can be so bad that i wake and am afraid to sleep again. I may even get up and check the doors and try to calm myself enough by reading or watching comedy, or a favorite light movie to get back to sleep.for me nightmares have also always followed a pattern, I would go with out a single nightmare for weeks even months and then they would start, one night I would go to sleep and i would have a nightmare and from that moment on I would have nothing but nightmares for 1-2 weeks having as many as 4-6 a night then they would stop; and once again i would be nightmare free for a while until it started again. I still dont know why i have them in this sort of pattern and i still have them like this to this day,

        Last year is among the worst year i have have experienced to date, if not the worst in all honest, because last year i lost 3 very critical members of my family, a cat Lorien (she passed unexpectedly,  my  service dog Nim and my mom all within a short span of time from each other,. since then i have been finding blogging pretty hard, i just struggle to know what to write anymore, but I know my grief is manifesting is not how others might expect. in fact i find it very hard to show grief around even close friends and family, but I plan to try and delve into that in another post at some point. One of the ways that it seems to be manifesting for me right now is in the form of nightmares.

       I am experiencing the losses all over again in nightmares,  this is happening with both Lorien mom and Nim, but often switching around with who, most common ones are mom and Nim., sometimes the events are nearly exactly as they happened and sometimes they are completely different but each time i wake up and i just break down. recently Nim has been the main focus of these nightmares, not surprising as i used to have nightmares about losing her even when she was alive, but it was different then, then i could call her up onto the bed, or more commonly tun around and wrap my arms around her while i cried myself back to sleep in the comfort knowing she was there and it was ok, Now i wake up and she is still gone,  I can no longer just reassure myself "its fine it was just a dream,"  i cant simply "wake up and comfort myself that is will all be ok, because it isn't even if the events in the nightmare were far from what actually happened the end is still the same and waking up only serves to remind me at least one part was real.they are gone, one of my worst nightmares has come true, and now i relive her loss a dozen different ways in my dreams.

i dont know what else to say