Tag Archives: Autistics Speaking

When You Fail To Understand

When you fail to understand that my Autism does
very much define me
When you do a something without realizing it can be a trigger for me
When you do things without asking me first
Change things on me without my consent
Or change my things around without asking me first
When you yell at me, scold me,
talk over me and then assume and judge me wrongly
then leave it all unresolved for me
No closure, just walk out on me
I am up all night crying
thinking the worst
and wanting to literally run away from my own home
At the same time i am begging for God to take me
I am not the monster you think i am
I do not act and react to manipulate and control other people
I have alot of sensory issues, many are inherent to my autism
But many are and have been brought on by a lifetime of trauma after trauma
I act and react because i am triggered
because my brain is wired differently than yours
Please, for the love of God, understand that
When upset and in distress, i am going to write about it
To educate you and others
And to help me to process through my time of upset and distress
It is NOT to slam anyone personally
It is not just because i want to hate
and put that someone or
someones on blast
I just have to write
Because i need to be heard
I need the world and those i care so deeply about
that still seems hell bent on misunderstanding me and making
us autistics out
to be the villains we know we are not,
then silencing and trying to fix, cure and erase us
To hear my words that come from my very heart and soul
THAT, my friends, is why i write
The things i am not
I am not just a “negative person”
I do not hate myself
I am the way i am due to a lifetime
of my autism being misunderstood and judged way too harshly
And me being rejected by others over
and over and over again because of my autism
I am not ungrateful
I am not selfish
I am not rude
I am not bad
I am not a terrible horrible awful this and that
I AM AUTISTIC AND I AM DOING THE UTMOST BEST THAT I CAN
WITH THE LIMITED TOOLS I HAVE IN MY TOOLBOX.

An Open Letter From A Friend

The following is from an anonymous friend who wrote this in response to some struggles i’ve been having for awhile now. I am posting this here, for educational purposes only, to help readers gain knowledge and understanding of what being a real friend, support person, etc., to an autistic person is….how to really be here for us, how to show UP for us, how to really have our backs.

I hope this will help any of you reading this who also struggles with friendships, and maintaining friendships because a non-autistic friend does not understand. I still to this day struggle in my relationships with all people, both autistic and non-autistic, because of so many sensory issues and a lifetime of trauma i sadly, have yet to heal from.

It doesn’t make us bad people. It’s because so many people today still don’t get it that autism and autistic people are not a behavior issue to be scolded and fixed and cured. Autism is a real and valid disability.

I urge you to read this in a quiet room, with your entire attention, and then pass this on widely, because on behalf of myself, an Autistic adult, all of my fellow autistic friends, and all autistics in this world, it is time for the non-autistic world to stop seeing us as the tragedies and burdens and monsters that we are not.

Hey *******,

I am an anonymous friend of Melissa’s and wanted to reach out to talk to you. She says that you are wanting to learn more about autism and how to support an autistic person like Melissa.

Like Melissa, I am also autistic and I think I can help you to understand a little bit more if you are willing to listen.

First, I’d like to say that as her friend, it’s really important to listen to Melissa even if you don’t understand why she might have certain reactions or responses. The reason for the way an autistic person is acting is not something that can be easily explained to people who do not experience the world like we do. So, when an autistic person is reacting or behaving differently than you would, remember that’s because you are not experiencing the same things in the same way as we are. I will talk a little more about this but just wanted to say first that there might be times when you will never understand why Melissa wants things a certain way or does things a certain way, but that doesn’t really matter because she still gets the final say in her life and in her home. Melissa did say that you wanted to learn more and thinks that you are a person who really wants to help support her in a respectful way, and she wanted to try to help you understand her better. To me, that says that she thinks highly of you to devote the energy and time into helping you to understand, so I want to help her make that happen!

Autistic people experience the world differently in many ways. The primary ways that we are different from non autistic people are in the areas of communication, sensory processing and movement.

Communication:

In general, autistic people like Melissa and I might struggle a lot with what is called expressive language. Even autistics who talk a lot tend to have a hard time with identifying and expressing emotions. This is called alexithymia. It means that some emotions are hard for us to name when we are having them and there is a disconnect between the things we are feeling and how it affects our bodies and sometimes how that looks to other people. It makes it very hard to tell other people what we are feeling when we can’t figure it out ourselves. But this is not a person being difficult or manipulative just to upset you, this is how our brains are wired. Some ways that you might see this when interacting with Melissa is when she might seem to get mad out of nowhere. Well, it’s not out of nowhere. I am often accused of doing this when in reality there are a million little things that have been upsetting or distressing me and I don’t realize and name it in real time and can’t express it to people around me. Autistic people also tend to be very blunt and communicate in facts. Some people see this as rude, but to an autistic person, not saying what you mean is pretty rude too. For example, I don’t think Melissa would ever bullshit anyone and pretend something did not bother her when it did. This is something that non-autistic people do and it’s baffling. So, as you can see, the way you communicate as a non-autistic person can be just as confusing to us as our ways of communicating are to you.

Alexithymia combined with the sensory regulation issues that all autistic people experience can be quite upsetting and overwhelming. It’s important to note that what you are seeing and experiencing when an autistic person is struggling in this way is not even a fraction of what they are feeling internally.

As Melissa’s friend of many years I know that she sometimes uses images she creates on her computer, writing or even pictures she shares on Facebook to express how she is feeling sometimes. This is something that a lot of autistic people find easier than talking. So, Melissa communicates just fine in autistic ways, but what she needs from the non-autistic people around her is to know that there will sometimes be conflicts in communication since we have such different styles and ways of expressing things than non-autistic people. The key is to respect each other’s way of communicating and interacting with each other.

Sensory Processing

Autistic people all process sensory input in vastly different ways than non-autistic people do. Some people are sensory defensive and some are sensory seeking. Some are both at the same time! I know that Melissa has a terrible time with the loud noises from the cars in her neighborhood. What might seem like an annoying sound to you is PAIN to her ears, and probably would be to mine too. Melissa can probably explain better what her particular sensory issues are, because not all autistic people are the same in that way. A lot of times, there is nothing that can be done about the sensory things that hurt us. Because a lot of that is up to other people….like the car shop people, who are clearly not interested in that kind of thing. So, that is something that Melissa has to deal with on an almost daily basis and causes her intense and overwhelming pain. Sometimes, we can make workarounds and accommodations like earplugs or headphones….but sometimes those create a whole other sensory hell for us too. I know that I can’t wear earplugs but I also can’t handle lots of noise. So, it can be a very hostile world to navigate at times.

So, it’s important to understand that our experiences are probably 100% different from anything you have ever known, but that doesn’t make them less true or valid. Sometimes, when I am overwhelmed from too much sensory input I am told that I am “rude”. I don’t mean to be, and I do not want to hurt anyone’s feelings but in that moment, I am trying to lessen the pain I am feeling. So, when Melissa is overwhelmed from sensory issues this might cause a meltdown….and if you knew how much sensory pain she experienced daily that she DID NOT react to, you’d know why meltdowns happen. It’s usually the last straw when we melt down. We are not trying to be rude or cause a scene, but we are in pain and we are trying the best that we can in a world that is really pretty shitty to autistic brains.

Imagine that I accidentally dropped a giant log on your foot and at the same time you were unable for whatever reason to tell me and I didn’t notice. Then I ignored the gestures and other ways you tried to communicate that to me. Not intentionally, but I just didn’t understand. You are dealing with this log, unable to move past it and it’s causing you so much pain that you eventually start to scream at me to get the damn log off your foot. I wasn’t TRYING to cause you pain, it was all an accident. And I wasn’t TRYING to ignore your pleas, I just didn’t realize or know any better. And when you finally screamed or had enough, I just get offended that you reacted to the pain. This is how it feels to be scolded for having a meltdown…..A meltdown is a bit like that…..it’s a reaction….it’s not an intentional act to upset another person.

And I get that it can be scary for a non-autistic person. It’s scary for us when it happens to us too!

When an autistic person melts down, the best thing you can do is to not put any more demands on the person. Don’t ask a bunch of questions or yell at us, scold us or tell us what to do. The best thing you can do is just be there, without judgment and to not hold it against us in the future. Meltdowns sometimes help us process things when we are at our limit….but they are not fun, they are embarrassing and we don’t enjoy them.

Perhaps a good idea is to sit down with Melissa when she’s not upset or having a meltdown (or if she wants help, I can help her over the internet too!) and come up with a plan for what to do when this happens. I have a plan, my autistic loved one has a plan and they are helpful a lot of the time! The autistic person needs to be in charge of what happens and what the plan entails though.

Movement

Movement involves things like stimming and how we use our bodies to navigate the world. Most people stim. Autistic people do it in ways that might look a little more obvious to the outside world. It also involves the need for a LOT more downtime than most people realize.

In addition to all that, I know that Melissa has experienced trauma and as someone who understands and gets complex post traumatic stress syndrome (CPTSD), I know how disabling trauma can be. Unfortunately, most autistic people are familiar with trauma. It’s not a part of being autistic as much as it’s a part of how people treat you for being different.

One thing you have to understand about trauma is that it causes incredible anxiety. This can be seen in things like a need for routine and schedules, wanting things to be a certain way, not liking to have to deal with changes or spontaneous shifts in our routine, the need to control our environments and things around us. The trauma of repeated sensory overwhelm makes most autistic people need to have things very rigid and controlled because we don’t want to have to experience sensory overwhelm and meltdowns all the time.

Melissa has experienced a lot of emotional trauma as well, and this also results in a lot of anxiety and the need for reassurance. This is something people can work on together….for example, I will ask the same question over and over again to make sure and it makes my non autistic loved one/friend irritated. So, we have a plan that I can ask four times and that’s it and if the answer changes after the four times for any reason, this person will tell me immediately. Then I know that the answer is the same without having to keep asking because they have not told me differently yet. I know that might sound strange to others….but it has helped to have that plan in place so much. But CPTSD will manifest in many ways and it changes a lot, so that is something that Melissa deals with as well. It’s a thing we need to work on, but it also is a thing that requires understanding from the people around us and it means that building trust in relationships is even more important for people like us.

I know this is a lot, and I have a hard time getting to the point, sorry. But Melissa is very dear to me and I love her a lot. I want her to find the kind of support that she deserves and to be happy and to feel safe and secure in her home and community. That is what we all deserve. Please feel free to ask me any questions even if it takes me a minute to get back to you because I don’t have messenger on my phone. You can also text me at any time.  and I will try to help as best as I can from far away.

Thank you to my dear friend for writing this up for me.

My Latest Medical Hell In The ER

TW/CW: Discussion of medical symptoms, bodily fluids, and ableism, violation of bodily autonomy, disrespect of my humanity.
In my lat blog post, i wrote about a recent scare i had when too much fluid was once again taken off of me at dialysis this past Tuesday. I got so afraid, because i could not eat or drink a thing, a huge painful gas bubble was in my upper abdominal cavity, and my urine was a dark brown color. I was also having slight dizzy spells.
I had my caregiver, Sam, take me to the hospital, to the ER, that evening.
This blog is about the ableism that occured, mainly from the first doctor and the two ER nurses i dealt with while there.
For one, i was greeted with a triage nurse who was not rude, but who wasn’t that friendly either. He took my history, my symptoms, and vitals, and let me know what all my vitals were, except for when he told me my temperature, he said it in metric form, and would not let me know what my temp was in Fahrenheit form. Then a registration person (female-presenting) took my info as well. They were friendly.
When Sam and i went back to the ER area, that was one hot mix of both bad and good. We waited like 35 minutes to be taken back to the ER room.
My first nurse was nice enough. Until later. (More on her in a bit!) But firstly i was put in an ER cubicle that was shared, not one of their many private ER rooms. And there was a woman in the first bed, along with a male presenting person who was standing and holding a 3 year old boy, who was running right into my area, and then crying so loud i could not hear my nurse or doctor. Okay, disclaimer, i love children, but the loud noise of the little boy’s crying was triggering me, as i was already a ball of anxiety and nerves, and i had to leave and get placed into another non-private ER room with two beds.
Okay, while i was still in the first ER room with the crying boy, a doctor, Dr. J., came right in, and upon haring my symptoms, he, without first asking me, reached over, grabbed my t-shirt, pulled it up, and began feeling my entire abdominal area. Then an unneccesary argument ensued when they wanted to put a catheter in me to check my urine, instead of the toilet hat they use for us fat folks that cannot do a conventional urine sample (pee in the cup). I refused the catheter, and they consented to the toilet hat.
I had Sam wheel me into the restroom, but we were unable to get the hospital wheelchair in to the restroom, so, the nurse proceeded, without warning, to lift up my legs, roughly, again, without first asking me, to move the wheelchair’s leg rests off to the side, so i could get out ad walk into the restroom. I reacted instantly by snapping at her to ask me first before just touching me. And let her know she was hurting my legs. I let her know i had lymphedema, and that her roughness could cause leg ulcers to break out on my calves where she was lifting them up.
She was not that friendly either. And she talked too loudly, so that everyone else in that whole area could hear what was going on. Isn’t that a violation of the new HIPPAH laws?
The following are copied and pasted from an actual survey i got in my email this morning from that hospital. Re-edited for clarity.
I dealt with a total of two ER nurses that night…St., and Ch.
Both nurses I dealt with were mostly condescending, and when i explained I am autistic and have certain ways I need for things to be, sensory issues, etc., (my accomodations for my disability of autism) they were both dismissive, and instead were quick to defend the rude nurses I had in a previous stay, over my valid complaints. I felt unheard, and talked down to.
In addition, when my first nurse, St, took me to the restroom, she handled my legs roughly, and without first asking me when helping me to get from the wheelchair to the bathroom.
ALL of ANY hospital’s staff needs to ask us first whenever they need to touch and move us. I believe in treating patients with utter respect and courtesy, and this means respecting our bodily autonomy. ALWAYS, ALWAYS, ALWAYS, ASK FIRST! And if we go to tell you things, do not dismiss us, and defend your staff over the feedback we give on them. That too, is dismissive.
I saw two doctors while there in their ER. The first one Dr. J, came right up and pulled the front of my t-shirt up without first asking me, to check (feel around) my abdominal area. This was invasive and a disrespect of me. While I realize he needed to check my abdominal area, he still needed to ask me first. Again, the entire ER staff need to learn to ask patients first, before you touch us. It shows respect and care for us as the human beings we are.
My second doctor, Dr. Sh, showed respect and was kind to me.

The lady dressed in a bright red pantsuit who came to draw blood for my labs was friendly and respectful.

The male-presenting individual who came to do an abdominal ultrasound, was also friendly and cool, and showed me respect.

However, I was only given partial information about my possible condition, and no one has since bothered to follow up with me from your hospital as to the FULL RESULTS of all blood tests, or the ultrasound I had while in your ER.
I was quite impressed with the courtesy and respect that both ultrasound person and person who came to draw my blood showed to me. They even asked me if i wanted the overhead lights kept off, to which i said yes, because bright overhead floursecent lights bother me greatly.

However, none of them would barely talk to, or acknowledge my caregiver and friend, Sam.

The reason I marked very poor for privacy is that I was put in two non-private ER rooms.

I was never visited by a hospital leader.
In addition, both of my nurses, which again, were St and Ch, never bothered to give me the TV Remote/Call Button, until I finally asked for it, and was given it only after I had asked for it, a full two hours after I came to the ER.

I was never offered water to drink, or a blanket, or asked if I wanted the room temperature lowered or raised. I was cold the entire time I was there.
In addition, when nurse Ch came in with Dr. Sh and a second Doctor, nurse Ch reached over and shut my entire TV OFF—–AGAIN, WITHOUT ASKING ME FIRST IF IT WAS OKAY IF THEY COULD HAVE THE TV MUTED so that we could talk. I would have been more than happy to mute the TV myself. It would have shown respect again, for my autonomy and me, as a human being whose feelings mattered to them.
Considering the overall manner I was treated by staff when i visited your ER on April 3, 2019, no, I would not recommend this ER to anyone.

I felt most unwelcomed there, like most of your ER staff that was on that night, just did not care.
—-
In closing, i am writing this, because my local hospital needs to train their staff to do all they can to make each and every visitor feel welcome in that hospital campus. The entire medical field needs to change and realize we who come seek medical help, are human, our bodies our ours, and they need to listen, hear us, and be patient and kind to us. Don’t manhandle our mobility equipment, don’t talk loudly so the whole facility can hear, and give us the choice of whether we are okay with being in a non-private ER room or not. I will wait for the private ER room, because our local hospital has a majority of their ER rooms as private.
It was strongly recommended that i be admitted that evening. But i refused, because of how i was being treated in their ER that evening.
P. S.~~~As for my condition, i recovered the next day. I could once again eat and drink, and my urine has been clear since then too. So it was dialysis related, them taking too much fluid off of me, that caused me to get sick.

Being Alone At Christmas-My Story In Posts

I am so not okay. A deep Christmas depression has set in, bc i am all alone today.
—-
I hate it that i am all alone.
—-
I hate it that none of my siblings even bother to send a measley Christmas card to me, let alone call me.
—-
I can;t take the loneliness much longer…..
—-
#BeingAloneAtChristmas
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My sister and her family, one of the two with whom i am estranged from, moved to Idaho in March 1991.
My mom and dad moved to Idaho in April of 1996.
My other ex-nice sister moved in with my parents with her daughter, one month later.
My baby brother and his family moved to Idaho in 1996 as well.
My nice sister moved to Arizona in 2001.
My eldest brother moved to Idaho in 2004.
His daughter, my niece, moved in with them a few years later.
I have one brother left here in Santa Maria. His two grown boys live in Fresno and Bakersfield.
None of them except my mom and sister in Arizona, acknowledged me this year, and they never do.
my other ex nice sister used to email and talk to me all of the time too.
But now, even she has turned her back on me, bc she says her health is now so bad, my meltdowns would kill her.
I so wish with all my heart, another nice family would adopt me.
I cannot stand the loneliness i feel today on this Christmas Eve.
—-
If you are reading this and you know of someone in your neighborhood who is a shut in and who will most likely be alone at Christmas, please go visit them, bring them dinner cookies, or just you so that they will have an actual person to talk to.
—-
To all of you in my family who are afraid to interact with me because i may just have one of my meltdowns,  please know, for one, my meltdowns don’t just come out of the blue. There is always a reason for my meltdowns.
—-
But none of you seem to even want to get to know your sibling/aunt. To find out that you don’t have to be afraid of me. That my #Autism is not so scary. To find out my being Autistic is not a bad thing. To find out that i am not wrong, a burden or damaged goods. I am just #Disabled.
—-
That is why i told my story online. So all of my family would read, understand, and their hearts would soften. I also told my story so that others would understand that we Autistics have real stories to tell. That we are not the “behavior” problem you may think we are.
—-
I invite you to Google Neurodiversity and #ActuallyAutistic. Google a blog called Autistic Hoya. You will get to know why i was the way i was as a child and teenager growing up in the Fields family. Maybe you’ll discover the sister/aunt you felt you never had in the process.
—-
I want to add this to my blog….
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I don’t always know the right words to say to a friend who is hurting, but by God, if i ever say anything that makes any of you feel invalidated, or like i am silencing you or being dismissive of you, PLEASE call me on it!
—-
I know the holiday season can be, and is rough, even unbearably rough for many people, and it is for myself. I just want to let you all know, i hold you in my space. I witness your pain, and your hurt, especially if you are all alone, and maybe your family has shut you out. I witness you, and i validate that pain and hurt—-it’s not you, believe me, because you matter to those of us who are your true friends—-it is on those who made you hurt, those who made you feel excluded, dismissed, silenced and unheard.
—-
I love you, my friends. I really do, and if you are hurting tonight, i am offering you hugs.   
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Merry Christmas, Happy Hanukkah, Happy Kwanzaa, Happy Holidays!   

I’m Still Not Okay–It’s Not Okay To Shut Doors On An Autistic Adult Who Needs Your Help

I’m still not okay.

Ppl don’t realize that when your job is to help others, to protect and serve, and you deliberately shut the door on someone seeking help bc their head is literally being blown apart by bass so sonically loud it may as well be inside of my house on max volume, that you may of just re-traumatized that person when they already have trust and confidence issues with police. Because of the way i’ve already been treated by so many police officers.

I want to move far away from this town, its police, its redneck politics!!!

A New Appeal-June 2017

Myself in our yard-summer 1975

My current situation is a Catch 22 wherever i turn. Not enough money. Not enough money. Never enough money. So, i am stuck here, in a place i hate, a place that is a prison, and a torture chamber, and an endless daily nightmare i wake up to every single day.
+++
I am a 57 year old Autistic adult, who is no longer in good physical health. I now suffer from very limited mobility, and it now very hard for me to walk, get in and out of cars, i can no longer drive, and can no longer take care of myself, so i have a caregiver, which is pad for by Medicaid. I am now housebound, and only get out because i have a caregiver who drives a car that i can get in and out of okay. I have never been able to work either, so i have spent my entire adult life since high school, surviving on very meager government benefits to get by all of this time.
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I need my Medicaid, mainly for the in home care i rely upon just to be able to keep all of my basic needs met. Without Medicaid, i would go hungry, and be without a way to keep myself clean, and my house clean, and i would be without heat, hot water, and electricity too. I would be all alone, lonely, and stranded. I would be forced to go live out the rest of my life in a nursing home, because i have no family support.
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My mom helps me by paying for my TV service, internet and phone, plus vitamins—-but when my mom passes away, then i am completely on my own, and will lose those things—-things that keep me connected to the outside world. Things that keep me a little bit healthy. Things that allow me to maintain friendships within the Autistic/Disability community on Facebook and Twitter.
+++
I have no family support from anyone else in my large family, besides my mom and one other sister who lives way out in the boonies of hot dry Arizona. I won’t move to Arizona, because the heat will kill me, literally, because of my physical health condition.
+++
Here are some things that the sister who lives with my mom has actually been telling me, posting these, because this illustrates the lack of support i have family-wise, plus their cruelty towards me—-also why i am not free to just go to Idaho and move in with my mom—-this sister lives with my mom—-Trigger warning for ableism—-
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“Gem” one—-My sister—–“I understand and respect your autism. But, and not being mean, and maybe cuz I’m feeling my age now, I hope that when you say you’re getting on a bus and leaving that state that it isn’t here that you’re coming. Not that I don’t care, cuz I do. I would probably have a stroke now though–my health is now as brittle as a fall leaf on a limb and the first strong wind (your meltdowns) will blow me to smitherings (lol) (not really funny though cuz it’s unfortunately the truth). (I couldn’t handle your music either 😉 (really). I agree, though, you do need to be moved, to a quiet place/street, and Mom needs to sell (those houses)………..just don’t know where though. 🙂 🙂 :)”
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Then this long “gem” she wrote me, and sent me links to agencies that she knew i had tried time and again, that she and i both knew would not help me this time either….Trigger warning for ableistic bad mental health slurs, and for calling Autism a mental disorder…… :
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My sister again—-
“ I’m not fed up with you, I’m just 61 going on 70 real fast and feeling it healthwise. But the night time calls aren’t really that good for Mom’s health-sleep-need either. So I spent some time yesterday afternoon and this a.m. researching places where you might find someone to call dispatch for you during the night and the following three were the best I found, but I’ll keep looking if you want–just let me know:
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California Nami for one has all kinds of advocates
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The next idea is so “HOT/COOL” and the Santa Maria Police Dept. is really supportive of the Neighborhood Watch Programs and I’ll bet they’d love having one on (your street).–can’t you just picture the Neighborhood Watch signs on your street? 😉 I love it!!!!! I really love this idea!!! Your new neighbor, E, might really appreciate having this program on the street too 🙂
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Neighborhood Watch
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Now don’t get upset by the next idea, as I’m not referring to you as a psycho but they offer a 24-hour crisis phone number and isn’t your Social Security disability based on your autism which was categorized as a kind of mental handicap? Anyway check out the following too:”
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(She sent me a link for a local Telecare mental health daycare program that i used to try to get help from when i still wasn’t sure where i fit diagnosis wise)
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Gem #3 that she wrote:
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My sister—–
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“ The only reason our phone is on during the night is in case someone in our family, including you, has to go to the hospital.
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Please find someone else to call dispatch for you, like one of your Facebook friends.
Otherwise, we’ll have no other choice but to turn off our phone at night, or I’ll be the one going to the hospital 😉
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Then this, also from that sister——this too is full of ableism, so yes, trigger warnings—–
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“I thought we pulled **** St. off the market so you and Mom could re-think your options because things were happening too fast and you guys weren’t prepared? Renting *** is dumb because right now it’s “show-for-sell-perfect” and Mom definitely won’t have the money to fix it up again if the renter’s wreck it.
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Also, we need to consider Mom’s “huge” credit card debt. If Mom dies, her creditors are going to immediately look into what she owns that they can attach their claws/liens to. This year we took care of this home, but your residence is still something her creditors can possibly attach and force a sale on.
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You guys really need to sell *** St. and you need to move into something that’s secure “for you,” that is either your’s or where the money off the sale of *** St. has been set up for you so you’ll be okay for several years. The money won’t cause you to lose your Social Security or Medicare. You can win the lottery and still keep your Social Security and Medicare. Duh 😉 You’ll only lose your MediCal. Big whoop! No big deal.”
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(Ummm—-no big deal???? I’ll lose my in home care if i don’t have my Medicaid, FFS!!)
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She went onto say—”Another idea: In 11 months, on your next birthday, you’ll be eligible to live, “in your own home,” in one of the wonderful 55+ communities (and many are not that expensive).
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Mom & I have even been considering such communities. In those communities you won’t have to worry about children, wild teenagers, dumb hot-rodding 20 to 40 year olds, or wild noisy neighbors or parties. Those communities are regulated by associations to keep things “nice” and peaceful. The sale off of *** St. could buy you a place in one of those communities plus leave lots of money left over.”
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Then she proceeded to send me a link to a mobile home park that is located in a VERY unsafe section of Santa Maria.
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This house itself that i live in and the cottage next to it—my mom owns both places—-is a money pit that still:
*needs full re-plumbs,
*my bathroom needs to have the floor ripped up, and a whole new sub-floor put in, then new tile, and a new toilet,
*I am sure much of the electrical wiring is not up to code
*I badly need a shower that is truly accessible—my current tub shower is not, even though i do have a transfer bench—it is still hard for me to get in and out of my shower *It is on a raised foundation, so there are three steps to both my front and back entrance that are now hard for me to navigate
*Both houses also badly need to be painted both inside and out—– —–so, if my mom were to sell this duplex as-is, she will not be able to get alot of money from the sale, because it is a fixer upper.
+++
I have no views here, just a small patch of lawn, small patch of blue sky, then asphalt, concrete, and then rows of ugly tin buildings to look at. I rarely get to hear any birds singing. I see no pretty flowers either.
+++
I need a way to get out of here to a place where i know i will be happy and where i will have more local friends, and supports than i have here. I won’t be able to do this unless i can at least get a way to get these houses fixed up and repaired, so that my mother can sell them for a good enough price.
+++
Being an Autistic middle aged adult, i am in hell on all levels because of where i live.
+++
I badly need to get away from here because of the constant sensory hell i am in due to the daily constant, all day long up and down, down and up loud traffic—-people hot rod and race through here constantly, which IS screamingly and roaringly loud, and top of that, they like to amp up their car stereos to where the bass is atrociously thunderous.
+++
I have no real way to truly buffer this noise—–and it has worn me down physically. In addition, i have had a long string of bullies in both the businesses and residents, who have seen my meltdowns, and instead of having compassion, they add to it, by doing just what they know will trigger me, so they can hear my screams and cries of sheer agony.
+++
I would be grateful and content to live here if it was not for the loud noise, the bullies who are still here, and the fact that these places need so much fixing up.
++
I don’t know where or how to fix this never-ending pit of hell that i seem trapped in. I wish someone would read this who would have the means to help me to finally be able to not just get away from here, but to finally be able to have a dream i have had since i was a child, of living in the New England area—preferably near some of my Facebook friends.

Trapped

Hydrangeas-1

CW: This is not a fat shaming post. This is a Melissa health post, because i am perishing.

I slept all day today, and had nothing but nice travel dreams where i was traveling, by airplane, to the East Coast, and in the latest dream before waking up at 4 PM, i was traveling to Bloomington Indiana, a place i did once visit back in July 1983.

I so wish i still weighed at least 175 lbs again, with no leg problems, and could get another car and drive again—-and even fly places to go see my FB friends. I don’t need to be reed thin, just at least back down to between 175-200 pounds. That would get me back to a better place physically- functionality wise, to where i could do all of those things again. I know it would help the lymphedema in my legs too.

I want to repeat again: I am not fat shaming by saying what i am saying. My body is shutting down. I am shutting down. I can no longer function like i need and want to because i weight about 350 lbs now, and i have bad back, knee, and hip problems, as well as the lymphedema on both legs—-AND the huge lymphedema ROCK on the inside of my left thigh.

The lymhedema was caused by me not being able to sleep laying down anymore, but sleeping for 8 years, from 2004 to 2012, on a badly broken down living room sofa that bore into my left leg and thigh, especially. I would sleep sitting up, with my feet on the floor, which is bad for leg circulation.

In addition, i have always been, and sill am addicted to junk food to help keep me calm because of this hellish street i live on, stuck day in and day out, inside this house, because i never feel well enough to get in the shower so i can get out and about and get my hair colored anymore.

Having so few people actually care about me in real life—-(i do have my mom, one nice sister, Connie, and my Facebook friends, but no in real life local friends or family support other than my mom and one nice sister)—-has worn me, and my body completely down.

In addition—i have to endure day in and out, unbearable loud hot rodding and thunder bass noise right in front of my house on a street where the speed limit is 25 MPH.

I never get to go anywhere anymore because of my physical circumstances. It is even now hard for me to keep doctor’s appointments. It is getting harder and harder for me to even want to get out of my soft comfortable life chair anymore.

I am depressed all the time now, and don’t have the will to live anymore, so i am praying daily that either God lets me win the lottery so i can escape this toxic neighborhood, or for God to please take me—-because i cannot bear the way things are any longer.

I am an Autistic adult and i feel trapped with no way out of these circumstances.

I Am Autistic—Say The Word

Flowers-2

One afternoon in April, i was upset, so i wrote a series of Vaguebook posts, and because i write when i am upset……and i mainly write to educate the general public about what it is like to be a middle aged adult who is Autistic so people will understand, get us, and accept us, i want to compile my vaguebooks all into a blog post.

What is it that helps flowers to blossom and bloom to all their glory? It is not yelling at them to grow already, and standing over them and forcing their peddles to unfold when they aren’t ready to unfold. And to be callous and cold with them. They need patience, actual warmth and affection, to be slowly and lovingly cultivated, and they need water, sunshine, and food.

For me, it is not being harsh and critical of me. And cold and callous. For me, i grow when i know i am truly accepted and when i am okay to be me. When it is okay for me to say “I am Autistic.” When i know my feelings, both happy and sad, and the ones that are painful too, are truly validated.

I don’t write to be mean and covert. I write whenever i cannot verbally say how i am feeling.
Post One.
“Trigger warning for the word stupid and the R word—and for also graphic depictions of child abuse
There is a valid reason why i have a chip on my shoulder as an adult.
It comes from growing up being told and made to feel
like i was all wrong all the time, every day, 24/7
that i didn’t have a right to my opinions
or to to say what i felt that how i felt, and i,
was just too weird
everything i ever did or said was
wrong, stupid and not good enough
being called the R word all the fucking time,
not just by the schoolkids but even by my own siblings
being silenced, muzzled, and having my feelings,
and me, always dismissed, invalidated and erased
being treated like my autism was/is a behavior
or that i use my autism as a shield, crutch, etc.
being told wrongly so that i was just a
lazy, spoiled, and selfish rotten brat,
when so many things
were and still are difficult for me to do
being told also wrongly so that
i never appreciated what people did for me,
when i did, but just did not know
how the fuck to show it
knowing my own father actually hated my guts
for the way i was even though i could not help the way i was
because i was BORN Autistic
imagine if you will what it is like
to go to school and have no safe zone there
where you can be you and
you cannot get away from all of the scary sensory stimuli
and you cannot be you or get away from
all of the unwanted scary sensory stimuli at home either
because your you is too wrong, too weird, to matter
you are expected to, forced to act a certain way,
and if you don’t, you are yelled down, scolded, and BELITTLED
all you can do is just go to your room all the time
because that is at least a little bit of a safe zone for you
always being talked over and interrupted
when i try to talk and express myself
yes, they did that too
and then they would interrupt
to finish all of my sentences for me,
not knowing what i was REALLY going to say
close spaces, having to be forced to endure being kissed,
or having to stand too close to others in a line
being beaten on my legs and buttocks growing up
beaten so hard it left welts that would raise up and bleed
having my hair and ears pulled so hard my head hurt
loud men yelling especially when angry
and my music–when i can’t even listen to my rock music
because the family music is country,
so i have to listen to that or i get in trouble for that too
a fear so bad i used to have to always
memorize the station my dad had the car and family radio on,
so he wouldn’t find out i was listening to the rock stations
my dad, brothers and sisters always pissed,
always irritated with me
i have bad flashbacks to all of this all the time
so that today, when anyone can present to me as angry,

even if  they aren’t, i am hypersensitive to it

i still take what people say and do wrong all the time
because of all of the hurts of my childhood
because i think i am being chastised and muzzled yet again
I have Complex PTSD thanks to what i went through
then losing my independence again,
losing my ability to drive and do for myself
after having my independence for 25 years,
where, 22 of them i was able to drive
has brought me back to how i felt as a child,
and that is how i feel now,
like i am that child again who had no rights
and now i feel as if don’t have any rights again anymore…… “
Post Two
“I am not abnormal.
I am Autistic.
There is nothing wrong with me
or the word Autistic.
I say the word.
People need to say the word.
AUTISTIC.
PLEASE ACCEPT ME. “
Post Three
“My special interests are not obsessions or addictions. They are my coping mechanisms and there is nothing wrong with me having these special interests.”
Post Four
“I write and tell my story so that people will understand.”
Post Five
“When i yell because of the noise outside it is because that noise is actually causing me pain. People yell when in pain. People yell and cry when they hurt.”
Post Six
“When i say that i cannot do something it is because i truly do not have the ability or the spoons to be able to do that thing.
It is not that i don’t want to do whatever, it is that some things i lack the ability to do. Sometimes i have the spoons to do some things. Other things i never have the spoons for.
Please understand and accept that.”
In closing, my Autism is not used as a shield, crutch, nor do i mean to use it as a means to throw it in people’s faces. I often do not have the words available to me to be able to articulate what it is that i want to say, especially when i can sense i am not being heard.
So, out comes the word Autistic. And i cannot hide my Autism, or take it on and off like it’s a coat.
I don’t write to bad mouth people.
I do not write about my family to bad mouth them either.
I write because the family abuse happened. Because i want to let others know they aren’t alone, and how to spot the signs of abuse, and i want my family to finally read what i write and say “OMG, i did do those awful things!”
Because i have no family to turn to, and my mom and one nice sister are both financially unable to help me more than they can, i am in a vulnerable situation where if i do not have my caregiver to help me, i am literally left to fend for myself—-and i have been left without caregivers in the past—–and that was so terrifying for me that it has caused me to become even more hypervigilant about making sure the people i love and who matter to me, always understand and get me—-so they won’t throw me away too,like so many, many others have done.
I live in constant fear of this, and when i have any disagreement with my friends, i instantly go into a panic mode so severe, thinking they’re angry, and hate me, and it often makes things even worse.
I wrote this into a blog because sometimes i can put things better into words by talking, but other times, like now, i can do it better by writing it. That has nothing to do with anyone but my own spoon level at the moment. I have not had very many spoons ever since the election, to be honest. Yes, i am extremely scared about the current state of our government now, too.

The “Cool Table” And Why I Am Here—Please Don’t Be Afraid To Friend Me

Candy friendship hearts

True fact….i got hurt a great deal growing up….at home i got ganged up on and hated on, yes, downright abused, for being so different and weird…..and all through school…..i never got to sit at the cool table.

Please don’t be afraid to friend me or accept me as a friend. I am here because yes, i do need help, but i am also here because i care about helping as a fellow Autistic ally. I am still new at this, though, so i am going to fail, make mistakes, use the wrong terms, etc. I am still learning though. But i can assure all of you, my personal circumstances and struggles are real, and i am not here to just get cookies.

Below is my story.

When you grow up physically, mentally, and emotionally abused, and not liked because you are Autistic, both at home and at school, yet are not told you were, indeed, diagnosed as Autistic when you were 3 years old by your mom until you were an adult, only after you had seen a therapist who gave you a soft diagnosis of Asperger’s Syndrome when you were a 39 year old adult in 1999—-this can cause you a lot of unneeded grief and damage your whole life.
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I grew up thinking of myself as all wrong. That i was damaged and broken. That i would never have friends, never have a job, never get married, never have romantic relationships, etc. I grew up in a redneck family who did not accept me, who just felt i was lazy, soiled, selfish, etc. They didn’t know, they didn’t know—-and i was only told i was born with a perceptual handicap, their words, and childhood schizophrenic tendencies. Then when i got my SSI in 1981, i was labeled as paranoid schizophrenic.
 +++
Then through years of therapy, i discovered i was Autistic. After i was near 40 years of age. As a result, i never got any of the services an Autistic child gets. I did spend from 1st through 4th grade in special ed classrooms, but then we moved to the country where there were no more special ed classrooms, and that was where i began to flounder.
+++
Because i grew up with little understanding, i learned early on, to cope by retreating into a world of my own, where i have always had a small group of imaginary friends who have always been like my angels. I would basically latch onto certain roads, highways, and electronics, especially those that caught my eye as attractive and personable and sweet and friendly—–and i would make imaginary friends out of those things.
+++
All through school, i longed to sit with the cool kids, and hang with the cool kids…..and be
able to sit at the cool kids table. There were times when the cool kids would let me, out of pity though, and then make me leave again, because i wasn’t like them. Oh, how that would hurt!
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Then i would go home and get yelled at and teased cruelly by my older brothers and sisters, and even my younger brother. My father hated me because i acted too weird for his tastes. He and my maternal grandmother could never understand me either, and i would just keep getting labeled with all these awful demeaning names and terms, yes, even the R word.
+++
Now, as an Autistic adult, i have discovered the cool table, sadly, very much exists in the Autistic community, and i am heartbroken about it…..because i think anything that is meant to leave people out, is anything but cool.
 +++
Why? Because it tells those of us already struggling with internalized ableism and feelings that we are damaged goods, that yes, we are indeed, damaged goods—-even in a community where we should all feel safe.
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I understand that many of you have also been hurt, and you also suffer from PTSD and Complex PTSD from childhoods where you too were abused, talked over, not listened to, not taken seriously, etc. Many of you were hurt even worse than i was.
+++
I also understand that in the Autistic community, there have been those who have scammed people, lied, and presented themselves to be pitied just to get attention—those who just want cookies all the time.
+++
I understand that all of us have different triggers, and that there are certain types of people who trigger us.
+++
But then there are some of us who are sincere, who are trying to come alongside of all of you to tell my story, not just so i can get help, but because i want to help the Autistic community as a whole, get heard, noticed, understood, accepted, and included and respected as the real human beings we are.
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I admit when i first came to Facebook, i would unfriend, then refriend people alot—-but this was borne out of my fears of being rejected yet again, or because a person who didn’t understand, would start giving me lots of ableistic advice, then they’d turn on me and get mean—–and i was still learning about my Autism. In the beginning, i was even reaching out to bad places like Autism Speaks, thinking—-and wrongly so—–that they would help me, because i didn’t know better then, that they were not to be trusted, that they were and are a bad hate group.
+++
Below are posts culled from some earlier posts i made yesterday about me, and why i get afraid and run away at times. Because i don’t want people to be afraid to friend me.
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Post from 9 hours ago.
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“I am afraid to send out anymore new friend requests even though i would very much love to make more friends in the Autistic community.
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I just got snubbed by one person, and one friend that did accept me as a friend, has been snubbing me completely, and i do not feel welcome on their wall.
+++
People who know me, who know my situation, know i am not here to scam anyone, that my situation is real. But today, i feel as though i just got told i cannot sit at the cool table.
+++
From now on, i am only going to friend those who i meet through comment threads who seems open to me, who i know will actually give a damn about me.
+++
I also won’t stay friends with anyone who are going to show me that they are not approachable to me. Basically, if i don’t feel welcome, i am gone.
+++
I am not okay right now. I want to die.”
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Post from 4 hours ago.
++=
“I just did another friend cull and some preemptive blocks for self protection. I don’t need to have people on my list, or in the spaces i go, who don’t make me feel welcome on their walls and comment threads, who consistently ignore me, and those who are mean.
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Or anyone who wants to cling to me too hard.
+++
I am also not going to spend my energy supporting those who i feel don’t like and support me. Because being in the space of someone who doesn’t accept me, is a huge trigger for me……then i get depressed and down on myself. Sorry if that sounds selfish, but i am too kind, i think, too willing to let everyone in, and i need to stop that, for the sake of my well-being. It hurts getting slapped cold in the face, having doors slam shut, having my outstretched hands slapped away. Yes, that happened today.
+++
New rule…from now on, yes, i still welcome new friends, i still have a big heart and care about people, but from here on, if i want to friend someone, i will private message them first, to explain who i am, that i am in the Autistic community, why i sent the FR, etc., so ppl are not scared off. Or i will let people come to me and friend me.
+++
Also, if i see in a comment thread, that someone is taking the time to talk to me, and we aren’t friends yet, i will ask if they want to be friends, and go from there. No more am i going to just straight out friend request people anymore. It will save me the hurt and rejection, and possibly being labeled as spam to FB.
+++
Because rejection really does suck alot.
+++
I love all of you who are my true friends. I mean that with all of my heart.
+++
And now i am going to go in my comfy chair and try to forget that today happened.
+++
Thank you to all who were here for me today.”
+++
Comment from 39 minutes ago.
+++
“I want to be able to start going to Autistic conferences and speaking someday, and now feel i can’t do that because many of the important leaders who do go to those conferences, have elected to shun me.
+++
I cannot pretend this doesn’t hurt. I would expect it from non-Autistics, paaaaaarents, narrow minded people who don’t want to accept us Autistics as the cool people we are, and my family but not those who even run chapters of some of the Autistic organizations i am actually seeking ***help*** from.
+++
In my defense, what i wrote in the above post **IS** my defense, and if some have blacklisted me as possible friend material for doing what i needed to do for self protection because i ran away due to lack of spoons—then they are being unfair to me, not giving me the chance to explain why and try to make things right, because yes, in the beginning, when i first came to the Autistic community, i still had alot of internalized ableism, and did not understand as much as i do now about ableism, neurodiversity, and my Autism.
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Many of those who i did friend, i ran away from, because i did not know how to respond to their bluntness, blunt personality, etc. I have grown alot since then though, and now i am barred from their cool table because i ran away out of fear due to past hurts and disappointments, when i was a newbie.”
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Comment from 8 hours ago.
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“It’s hard for me bc i am housebound, plus grew up with few friends, and a whole bunch of siblings who were always ganging up on me and making me feel like shit warmed over all the time.
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I just can’t let my guard down as much anymore….that way….i won’t get hurt again.
+++
Getting the cold shoulder from my own community hurts even more though, bc i consider us all like we should be all family, ya know what i mean?”
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Comment from 8 hours ago.
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This is how i handle things today.
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“ I will basically unfriend and block a person
+++
if they are consistent in ignoring me
+++
i feel unwelcome on their wall
+++
they yell at and attack me verbally
+++
i get told how to feel or how to act—example if they tell me to cope by just wearing headphones/earplugs to cope with my environment
+++
they turn against me
+++
i get preached at, and someone tries to convert me to their brand of narrow minded Christianity
+++
or i see the person is so mean i am scared to even talk to them
+++
or they are unapproachable, hard to get to know.
++=
or they are too clingy and keep taking what i say, mean, always the wrong way.
+++
I will then block those people so i don’t have to see and get triggered by seeing them in mutual space like comment threads.
+++
Mean people trigger me alot.
+++
So those things are why i have the long block list i do. I don’t do that to be mean, i do that to self protect.
+++
I too will private message a person and talk there, so it doesn’t trigger and scare away people, especially if they’re new allies.”
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To all who have read this, i thank you….and i thank all of you who are my friends and allies.

I Am Autistic, Not Spoiled

midnight-auroras-lake-superior-michigan

I am Autistic
I am not a behavior problem
I am not a faulty broken appliance
My Autism
is a neurological developmental disability
That i cannot just take on and off
like one takes on and off their jacket or clothing
I cannot help it that i am easily triggered by
Abrupt changes
Changes happening that happens
without my first being told about it
and prepared for it
Harsh impatient angry tones of voice
Harsh impatient angry looks on the faces of others
Certain foods
Certain songs
Certain smells and scents
Certain atmospheres
Certain textures
Certain lighting,
especially if it is intensely strobe-like
The dark
Being chided or made fun of
Being told i said or did this or that
when i know i didn’t say or do that thing
Being told things are a certain way
when i knew they were another way
I am ultra sensitive to being criticized,
talked down to, condescended to and yelled at
Please understand when i am having a meltdown
it is not a temper tantrum
the meltdown has happened because
something has triggered me and
caused me sensory pain and anguish
sensory pain and anguish that is very real to me
As if i was being actually physically hit
or stabbed or whipped
it is especially at that time that
i need to be treated gently
My Autism cannot be fixed or cured
or scolded and yelled away
Nor can i separate myself from my Autism
It IS a part of me
It is all of who i am
My Autism does define me
It defines all of who i am
God made me and all other Autistic people
Please understand that I am me,
i cannot be and act the normal
that the world wants me to be.
Please understand this.
I love you, everyone.
I love you all,
and i really hurt when i feel
people don’t love and care about me.
Please let me be me and
don’t hate me for being my Actually Autistic me.