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
Driving-NOPE
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
Eating
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
