Wednesday, April 15, 2015

please stop Assuming- what your assumptions of disabilit based are wrong

   Please Stop assuming

Please please stop assuming i"m independent, well off, mildly affected have the easy form of autism "high functioning " or whatever else you want to call it! Just because I post and advocate on the Internet! And STOP Shaming autistics who do have independence or a milder form of Autism! Stop using it to take away their voices!

Ok I am going to be straight forward here and honest As I don't like posting about my challenges on social media, I like to keep them private this in no way means I don't have them! Yet somehow people assume I dont. Here is the thing I don't fit neatly into your little box and most Autistics don't!

All too often people see I write blogs, they see I use social media, that I'm trying to get a bachelors degree and I am engaged and they use this to make assumptions about me and decide I am to mild to have significant impairments from my autism, they assume I am not severe enough and so my opinions dont matter, what you don't realize is my fiance is also disabled has ADHD and likely Autistic too, I am going to school because that's what my transition plan was and that's what I know how to do, I have been doing it all my life, if I get my degree I have no idea what I will do after that, so let's out this all out on the table then once and for all!

The truth is......I'm actually pretty damn disabled

First off I can't drive a combination of sensory issue, trouble focusing, delayed reflexes make this something I just flat out cannot do!

Face? "Who are you?....oh right your my parent"
I can't recognize faces out of context, not even my own mother! I have to use other ways of identifying people! I use hair, clothing, context and smell. So in class I can recognize my teacher but if she cut her hair I wouldnt know who she was and would panic when she started class because I would see her as someone else and I would walk out and franticly try to figure out what day it was, was i in the right building? Was class canceled? Did we switch class rooms where is my class? When my fiance cuts his hair i often cry and feel uneasy around him for the next week or two, a few times I almost walked off with someone who had a similar hair cut and outfit to my mother!

 ADLs/self care

In my last neuropsych performed last summer or fall on the ABASS ll  I scored over all in the "extremely low range" and never received above a "borderline" in any of the categories within!" And we were being generous because the truth is most everything on their we checked off as "yes" needed a side note of "with help, supervision and prompting" there are many things I can do I have learned to do I don't process to do without frequent prompting from eat, brushing my teeth taking, my meds putting on *clean clothes*,  to doing homework,  cleaning my room and basic chores, if I don't have someone prompting me to do these things on a regular basis they generally don't happen  and I will go months without brushing my teeth, weeks wearing the exact same outfit only remembering to change my under bits every few days, Even though I have and thrive and NEED routines to survive I need prompting to start them,  I really heavily on a picture schedule app just to get me through my mourning routine, because just getting up and getting ready is often a confusing and overwhelming tasks, but the picture schedule only serves as an aid to help me get started. I without someone prompting me to open my picture schedule I will sit for hours confused and unsure what to do first or how to get started. Before when I had Nim this was only a bit less of an issue since she would always wake me, we had our walk together and then i would come home abd be mostly able to remember to start my picture schedule, but even this wasn't 100% think more like 40 % after Nim died, my world fell apart, and "functioning" became even more overwhelming. Nim was no longer there to signal me and opening my schedules became painful as her care took up a good 50 percent of my daily routine Without Nim I need now more than ever to have someone to prompt me to get started on those basic daily rituals.  However the visual schedule isn't enough, as if something interrupts me or there is a suddenly new step or obstacle (like no clean bowls for breakfast) I will become stuck and begin pacing back and forth and unable to move onto the next thing and may become so overwhelmed with confusion i meltdown. having someone there prompting me helps me get back on track and will often help get me through meltdowns so i can rearrange and figure out an alternative, without this help remain stuck for hours, This is all simply trying to get ready for the day, but it is by no means the  end of it, these issues and challenges extend throughout the day and a simple break in routine or expected plans can cause me to get stuck and become completely non functional.
           Sensory issues also play another role in impairing my basic ADLS , One of the reasons tooth brushing is a major issue for me other then remembering to do it and not knowing how to do it right or how long to do it tooth paste is also an issue. Most toothpastes burn when I use them and so I must have a very specific type of tooth paste or I cannot brush my teeth. While I love showers and bath but the feel of towels on my skin after sends a horrible sensation through my body and if the towel rubs on itself i get  horrible sensation in my teeth like i had bit into it that makes my body shake and can cause panic and overload, some days it is  enough to cause me to shut down and break into tears until i can get my body to restart and be able to move on, this is another area where "having someone there" can make a difference between out for an hour or two and getting through it in 30 to40 minutes as they will be able to help by stitching the towel for blankets and then be able to provide a deep pressure that can help get me restarted. After showers and baths i have to be completely dry before i can put on clothes, this is less of an issue with shirts and sweat shirts for me as it is pants, putting on pants while my lower half is not yet dry will also send my system into a sensory mess, This will also cause a long lasting sensory irritant throughout most of the day while my pants and skin fully dry.  Sensory Irritants are things not bad enough to cause overloads and meltdowns on their own but drastically increasing the risk of something else triggering them and that something else can be something very simple a minor and even something i may not normally be affected by.  New freshly washed clothing can also cause issues as it often feels tighter to me which is another sensory irritant and they take several hours to a whole day to feel comfortable in. Sensory issues cause many impairments for me and affect many things like sleeping, eating, dressing and where I can and can't go or do and  there are many of them and they are complicated. In fact sensory issues can make up their own  pos entirely t so I will only use these few examples


If I have someone helping making and cooking meals for me i can mostly be okish with this but in general I am not, this is another area where I need a lot of prompting as I often do recognize when I am hungry until i'm having headaches and feeling shaky and emotional, even then  if there isn't something easy to heat or just eat to I often won't eat because I can't figure out what to cook or where to start so I become over loaded and wander off and meltdown until I am exhausted and pass out or find a way to forget my hunger until the option of easy food becomes available Another common issue I have is when i am hungry but there is nothing my mouth will accept or will want to eat so  i gain will wander off and not eat anything.  There are a few things I can cook on my own but all to often I get overwhelmed by all the steps involved just like ith my moning routine and without someone there to prompt me i will not make more then one meal a day, though even this can be risky as i tend to forget im cooking and have left things on the burner, I find if i have premade meals or things easy to make like chicken nuggets I am a bit more likely to eat. However getting food is often so overwhelming I generally dont Eat
Other issues I face arround food is texture ,taste and swallowing.  As is to be expected there are certain textures and seasonings i can't eat, my body has strong reactions to them where my throat will refuse to swallow them and no matter how hard i try i just flat out cannot eat them some examples are, many nuts, mashed potatoes, tofu and anything spicy Even when I can eat foods I like they I always need a drink as food gets stuck in my throat really easily and some foods that I like and can eat just fine may be more likely to be regurgitated (not something I can control)

Other areas I have impairments
·         Brain body disconnect (this means my body doesn't fully obey my brain and causes impairments in communication, writing, ADLs and more (this will likely be its own post some day)
·         Sleep
·         sensory issues
·         sensory processing
·         understandingbody language
·         Socializing
·         Meltdowns and shutdowns
·         Communicating
·         Wandering
·         processing danger in real time
·         highly fixated interst
·         finances and understanding money and bills
·         I can't drive period
·         body awareness
·         facial recognition
·         Executive functioning
·         cooking/ cooking safely
·         staying organized
·         managing female issues
·         and more!
        the truth is I have many many challenges and impairments, many of them are things you don't see or couldn't really know about with out spending real time with me. with out spending a day ot two with me or without taking on a job as an aid or caregiver for me most, of these impairments you would remain unaware of and would not know about from talking to me online or maybe not even spending a few hours with me a week. (well depends really, more you wont see ALL of them, but like spending time with me in person where you will see me stim and talk to you through and AAC device and i stuggle with eye contact and tend to hyper-focus,  but wether I was verbal  or nonverbal wouldn't matter since either way you could only really see a few of my issues and could not possibly make a proper judgement on the level of my impairments and disability just by interacting with me. This holds just as true if not more so online and when reading my writings, where i have many errors in grammar and spelling you are only seeing a fraction of what i am struggling with and far far far from all of my challenges.  The truth is  I have come so very far in my challenges and abilities since I was little and I hard to work hard to get to where I am today years worth of OT , play and speech therapies, of doctors and specialists.  thing like doing buttons on my own unless they were snap buttons didn't happen until i was 10, tying my shoes i was 14 riding a 2 wheeled bike? 14 (and that i can't do safely and end up cut up from it so i need an adaptive trike do to issues with body awareness)  holding pencils and basic writing took years  and years, I never did learn cursive and computers made a HUGE difference in my ability to write to express myself!  Yet all to often because I speak of a need for acceptance or i speak out against autism speaks  and can write online and express myself on the internet I am told i am to high functioning to know what real autism is like and people assume I have no real challenges or significant disability,What they don't realize when they assume this is I do have many very real challenges and I have worked very hard to achieve the things and accomplishments I have

        I am not alone in this, this has happened to all of my fellow Autistics, This is a practice a few Autistic friends and parent Advocates and I coined the phrase for called functioning shaming  definition below. This is something that is very harmful and damaging, it takes away voices from Autistics who had to fight to get their voices, Please keep in mind  when someone id advocating for acceptance or boycotting against an organization  you are only seeing a small fraction if their abilities and their challenges you don't know how hard they had to work to get there you don't know what challenges they have on a daily basis and by telling them they aren't impaired or disabled enough you are not only making assumptions based off of what little you see but you are also PUNISHING them for making progress (something you insist you want for your child or loved one) but taking away voices many of us spent years fighting and struggling to get, Voices that could give you insight and help you be able to help your Autistic loved on. so Please stop assuming and listen you then maybe we might both learn something and be able to help each other! 

 please stop making snap jugments about somones abilitiies or lack of ablities off what the post about, stand for or from brief interactions

please stop using accomplishments to take voices away fro Autistics

please stop assuming someone cant have severe disability and impairments and still want acceptance and to be treated like a human

please stop using functioning shaming!
                   thank you!
Functioning shaming  (1) the act of taking a person's accomplishments and your perceived functioning abilities based of the fact they have strengths or  abilities in one area and or choose speak out an organization that that talks about them yet shuts them out and is harmful or they choose to advocate for acceptance and understanding,  to dismiss and belittle their challenges and efforts to get to where they are today and silence their voice from the discussion of their disability(2) The act of saying someone is to impaired and disable to have an opinion and assuming they want a cure or hate their disability  because they have many challenges and may not be able to fully self advocate yet / using their impairments to deciding  they have your opinions and thus you speak for them and know what they want and need.  (also using their impairments to overlook what they can do and their abilities. (3) the act of punishing autistics and others with disabilities for developing or not developing skills) (4 The act of using ones abilities in one area or lack of abilities in an area you to silence them or speak over them

image description: purpl backgroound with the text of the definition of functioning shaming

Monday, April 13, 2015



Both exciting and horrible, I love and hate wind

Wind is an all encompassing sensory experience , in the wind I loose sense of direction and I become confused, in the wind I can loose balance and all sense of where I am, walking into the wind is disorienting and blinding  sometimes blowing sand and dirt in my face or what ever else it has picked up but the wind at my back sends my hair to blind me.. Push or pull, left or right wind is overwhelming

It takes up leaves branches and sand dragging them along, suddenly a loud clashing as a metal can clangs along pushed on by the wind as the leaves scratch on the ground and a rustle in the trees as branches sway,Dirt blows into my face a thousand tiny pieces hit me at once as I close my eyes,  wind can hurt , wind is loud wind can mess up my entire sensory system, sending me spinning Into sensory overload

I can't figure out where I am the wind disorients me. A simple walk a path I know for even but a short distance can confuse me in the wind and I might be thrown off track and lost in the wind.

But wind is awesome, wind is amazing, from inside, except when it screams,  wind is powerful, from inside it is exciting to watch it blow things effortless around, sometimes in circles, I love big windstorms there is a sense of adventure to them you never know what will happen and so long as I stay inside I'm ok,

But still I love and hate the wind

Wednesday, April 1, 2015

Lighting it up blue hurts Autistics! Wear Red instead and hangmulticolored light too!


        This year I will not light it up blue, I will not wear blue
Please join me don't wear blue don't light it up blue wear red and hand multicolored lights instead!!!
What's wrong with blue?

          To starts off Autism is a vast spectrum, no to individuals are the same, symptoms And the severity of the symptoms are different for everyone on the spectrum and even this is a bit fluid for autistics.  A single blue light is very one sided one view,
Light it up blue and wearing blue was started by autism speaks. autism speaks is at the center of a major boycott and is the only charity continually challenged by the people they claim to represent and there is a very good reason for it!

         Autism speaks has several MAJOR issues that can not be ignored! From irresponsible  spendings where only 8 percent goes back into the community in the form of services and 43 percent going into research that does NOTHING to help autistics and is generally geared towards things such as prevention and prenatal testing which would enable parents to choose if they want to abort the child based off of a prenatal test,  (this is based off of their 2011 tax form because in their 2013 tax form they merged "awareness, such as adds and self advertisement with "family services making calculations  very difficult)

        This means Autism Speaks is actually TAKING money out of the community that could be going towards providing much needed supports and service

        What maybe even worse then taking much needed funding for resources out of the community
Autism speaks uses fear and demonizes autism to get donations, Awareness is important but it is no good when it is done through creating fear, pity and stigma and light it up blue is their national awareness campaign and is nothing more then a thinly veiled self advertisement and I simply can't support autism speaks!
I refuse to support an organization that tells the world that I and others with my disability are

 A Crisis
Tragedies and
Ruining our families lives

            If any other charity said this about any other minority there would be national outrage! What if this was how  national female, Hispanic, black,  pagan, Muslim or christian groups spoke of the people in their ranks? What if they went even further and had none of those individuals in their actual organization and refused them a voice? What if they garnered pity for family members who killed these individuals sighting that person's gender, orientation or religion as being so hard and burdensome their deaths were understandable and even acceptable? That what Autism speaks does, when you support Autism speaks this is what you are supporting!

            So I will not light it up blue, I will not support autism speaks and I will not help spread an awareness that at its core harms Autistics!

            Instead I am going to promote Acceptance and understanding by wearing instead and hanging multicolored lights for Autism Acceptance and by participating in events created by Autistics!

            That's what we really need acceptance, supports and understanding so please join me in raising the voices of my fellow Autistics, promote acceptance wear red instead and hang up some multicolored lights and shine a light for acceptance of the entire spectrum!
                                             Thank you!!!

For more Autism Acceptance month activities Check out

Not just blue- multicolored lights for Autism Acceptance

Walk in red

Autism Acceptance Month