For those of you who don’t know me, i am an Autistic and physically Disabled housebound 55 year old adult who is literally dying of loneliness and severe cabin fever. I will be 56 in May, and i still have at least ten more years ahead of me.
I have friends online, on Facebook, but no in real life local friends. My family all moved out of state far away—to Idaho, and one sister in Arizona— when i was still doing well, so i now have nobody, except for my caregiver. When she comes, she comes six days a week, in the afternoons and early evenings. When she is here, i am fine, but when she is not, i go through agony, and find myself sleeping to pass the time, because i can’t just get out and go places like i want anymore—like i used to be able to do. I can’t even take walks anymore. Because i now have very limited mobility—and because of the bullies in my neighborhood who may taunt me if they see me outside of my house.
I never got married, never had children, so when my caregiver isn’t here, all i can do, aside from sleeping to kill he time, is go onto Facebook to talk to my online friends, and post about Autistic and Disability issues and politics mainly— and pick up the phone and call my mom and talk to her. I do have a few shows i like to watch on TV, plus i also watch YouTube. But i so long to have local in real life friends who would come visit me and take me to the nearby ocean, which i still love. Or to the movies. Or out to eat.
Why don’t i just move to where my mom lives? I don’t have the money to do so, and neither does anyone in my family. In fact, the rest of my siblings, their spouses, and my nieces and nephews all ignore and shun me. They have absolutely nothing to do with me.
In 1987, i was finally able to move away from my parents to a small cottage in the back of another house, where i had wonderful elderly neighbors who helped bring me out of the shell i was in. In 1990, i learned how to drive, secured my driver’s license, and an older car. I became determined to try to get myself off of government aid, so i spent the next decade—all of the ’90’s—-appealing to agency after agency—and soon gave that up, because i had no luck. Because i was always deemed ineligible for services.
In May of 1991, i had to move from that nice place, to one of my sister’s rentals, and that was when things began a downhill slide that has only gotten worse. The reason i am still alive today, is due to my so far, strong faith, my will to go on, and being able to develop creative unique ways to cope as a small child…..i still use those unique coping mechanisms today.
Now, two and a half decades, after enduring lots of neighborhood bullying—-more on that later—-several friendships ending with those friends turning against me, plus, several traumatic caregiver experiences, i have once again stopped driving and gone back into a shell. I am once again afraid to go anywhere by myself—petrified, in fact, and must have my caregiver accompany me everywhere i go outside of this house now. I now have severe noise sensitivity issues, and severe abandonment and trust and PTSD issues. I have several meltdowns a day now due to various things.
I am still a human being, with feelings, and a heart, and i am suffering—not because i’m Autistic, but because most people still don’t get—or seem to want to get Autism. Also because of the noisy neighborhood i have been trapped having to live in for the past 24 years, and because of my steadily worsening physical health. My mobility is now quite limited due to a circulatory condition (Lymphedema) that developed on my legs. I can still walk short distances, but only with the aid of a cane and walker. I badly need a mobility scooter. I also badly need to have my bathroom retrofitted with a large walk-in shower that i can get in and out of easily, because the current standard tub shower is next to impossible for me to get in and out of, most days.
Unfortunately, the reason why the neighborhood i have been living in for the past two plus decades has been bad for me, is that—-on top of the noise, has been that most of my neighbors early on, all assumed i was a “crazy lady”. Why?
My problems began with two mean girls next door to me, just 11 months after i moved here,who both turned against me and began to taunt and torment me–and then, because i live in a mixed residential/light industrial zone, several other neighbors in a restaurant supply business, a food bank, and two auto shops, all began to notice me and bully me too——because the mean girls’ behavior resulted in me having loud meltdowns where i would scream in sheer terror at their loud deliberate taunting and loud music being blared right into my house.
After that, it was like i was reliving my entire painful childhood all over again, where i was afraid of all kinds of loud noises—and i once again became afraid of certain loud noises.
Today, even though a police officer has now been able to help to calm many of my problems down, my PTSD prevents me from overcoming the noise sensitivity, plus i am now so battle-fatigued by all of the bullying and tauntings i have endured from the mean girls, then the other business employees, that i now feel like i am half-dead all the time. I am tired all the time. I sleep in two shifts, for three hours after my caregiver leaves in the evenings—-and then for another five hours in the mornings till about 1:30 PM. Ironically i use the loud volume of my own TV and my own music—-to cover the outside neighborhood noises—-because i am able to handle noises that i see as “friendly” noises—-if that makes sense. And i consider my TV and music to be “friendly” noise.
Therapy has never helped because most mental health professionals want to dope me up, and then play what i find to be twisted weird and very ableistic head games with me—-they want to fix and cure me like NOW.
PTSD is a thing that cannot easily be cured. it can be treated, but not cured. And Autism—-definitely cannot be cured. And people should stop trying to cure the Autism out of us.
The reason i’m writing this is that i need help with several things, for the sake of what is left of my health and sanity.
One, i need to move from this neighborhood to a small house that is in a nice quiet neighborhood where i will have nice neighbors, and they won’t be right upstairs, downstairs, or right next to me. And no, i don’t want to move to Idaho or Arizona, because it is too hot in both places, and i am very sensitive to weather that is too hot. Plus—living with my mom is also out—-i am a very hard person to live with, because i have my weird sleep schedule and i have a lot of quirks and routines.
Two, i need a mobility scooter that my caregiver can easily handle, and a place with ramps, and disabled accessible bathroom.
Three, i really long to have local friends who get and accept Autistic adults the way we are, who will be like a second family to me—-who will take me places and come visit me, and maybe i could even go to church with them, so long as it’s a liberal church—-because i am a progressive liberal, and i am pro-LGBTQIA.
And four, i need a good doctor who won’t body shame me, but who will help me to get the leg surgery i also badly need to remove a large leg tumor that is the size of a basketball that is on my left leg.
I really feel if i had these things, my happy will come back. I so wish i had some real help in these areas. Please.
I felt the need to put my feelings into another blog post tonight, because, because—lots of reasons—one being, i would like to know that i am not alone—-that others also have a world where they go to cope, where there’s imaginary friends—because the NT (Neurotypical, as in non-Autistic) world has hurt you, like it has hurt me. So you go there to escape and find the acceptance the NT world isn’t giving you. That is what i do.
Firstly, i hope fervently that one day, the NT world will finally get it that Autistic people are real human beings, and that our disability is real—and hope that NT’s will understand us, accept us, listen to us, and respect us. And realize that we are not a behavior problem, or puzzle pieces.
It is my hope that one day the police, medical, dental, vision, and mental health professionals will all do the same.
It is my hope that stores, restaurants, concerts, sporting events, movie theaters, etc., will also become Autistic-friendly.
We should not have to hide, or muzzle/censor who we are to fit into the NT world. We should not have to hide just because we are Autistic.
Yesterday, the police officer who is working with me to help resolve some of my issues with my neighborhood—and he has really done a great deal to help me, by the way; he has been awesome, a real Godsend, to me—–came to see me to check up on me, and see how i am doing.
For the past month, he has had a speed radar trailer placed on my street, and said i would have this first on the other side of the street, then my side of the street. And he said i’d be able to have it here as long as possible.
To help cope with being lonely, and mostly rejected by people in real life, all of my life, since i was a little girl, i have always gotten fascinated by, and then i would latch onto and make imaginary friends out of certain electronics, roads and highways. This has helped me to be able to survive to be almost 56 years old. I will be 56 in May.
A word about animals and why i don’t have pets, before i go any further. Because yes, this is important. I have always been shy and afraid of, and unable to handle personal contact with any animal, so i have never had pets, but i have always admired them from afar. The uncertainty of holding, cuddling and taking care of a pet, triggers in me a fight or flight response, so i don’t do well around animals. I never have been able to.
As a child, i was scratched by our family cat, and then our family got a dog, and its loud bark and jumping on me and licking me also frightened me, so those feelings of fear have lingered and are fears of mine today.
I do love being around people, and i am outgoing. I make in real life friends easily—-however, it is the being able to keep my friendships going that i have always been very bad at. Because i am very sensitive to being abandoned and having people get angry and hate me, friendships do not last with me. I put up walls. People then get frustrated because they either don’t feel they are helping me, or they feel as if i am hiding behind my Autism, or using it as an excuse to “not try”. None of this is the case. I have bad sensory issues with people, even though i love them and care about them.
I also have had a very painful childhood, both at home, and through school. In addition, for the past 23 years i have been bullied by many of my neighbors where i have lived for the past 24 years. And then i have had several bad caregiver experiences to top that all off.
So—i have my imaginary friend world that i escape to, where i am accepted, where these “people” i create, won’t turn their backs on me and abandon me.
The speed radar trailer is still across the street, and now i have grown upset that they will never bring it over to my side, or they will put it on my side, but put it where i won’t be able to see it—- and i know they will eventually take it away completely—–but i was promised that yes, it would come to this side of the street after about two weeks of it being across the street.
To make a an already long post shorter—-all i want is to be able to have the speed sign over on my side for at least two weeks. I know i will get this out of my system eventually, because i do after a time, but for now, i wish they would just come and put it out in front of my house so i can see it blink and flash the numbers, and the “Slow Down” message. I like these speed signs, and i used to love driving past them when i used to drive.
It’s just a simple request and plea….that my city police have compassion on this housebound person, so i can have something new to do while i have to be housebound. (I am housebound because of my legs. I have a leg condition called Lymphedema, which is caused by the lymph fluid building up in my legs. It happened because i was no longer able to sleep in my bed laying down. For about 10 years, i began sleeping sitting up on my couch with my legs and feet down on the floor. Now, i also have a large lymphedema tumor the size of a basketball on my left leg. This has impeded my mobility to a great degree.
All i want is to be able to see the speed sign from my house for awhile.
I don’t know about any of you—-do you also have imaginary friends? Please comment. I did turn this into a blog.
Yesterday someone commented on my last blog, telling me they saw my videos, and that what i need is chelation therapy and hyperbaric chambers to **cure** my Autism.
I Don’t. Think. So.!!!
I’ll tell you what i need.
I don’t need to be ignored and forgotten about. That hurts me and scares me that i will be left to fend for myself.
I need and want acceptance. I badly long to have friends. Local in real life friends who won’t be afraid and walk off from me, who will stick by me and accept all of my quirks and sensory issues. Because i am not wrong. I am not in need of any cures or fixes.
I need friends who will invite me to their house, even when i am totally being Seattle Grunge-appearing, who will all still make me feel welcome even so, and we have a nice supper of homemade spaghetti with a zesty tomatoe-y meat sauce seasoned with Italian seasonings, and with Italian sausage…..hot from the oven hot buttered garlic French bread, a salad with romaine and green leafy lettuce, shredded carrots, Roma tomatoes, pickled beets, sweet cucumbers, and buttermilk Ranch dressing. And then a nice homemade lemon cake with lemon frosting for dessert.
I long to have local friends who will drive me up to the ocean and let me sit and hear and watch and smell the ocean as the sun sets.
I long to be able to go to the movies. To fun Farmer’s Markets. To Cambria, Montana de Oro, or to just go to the mall or park. To ride on the freeway again.
I am lonely. Most of my family do not call or write to me at all. I just have my mom and two of my sisters, who are nice to me. But they all moved out of state at a time of my life when i was doing better than i am doing now.
I do have physical disabilities that do need attention. I need to have a large leg tumor that is the size of a basketball surgically removed so i can walk. I need mobility equipment, and ramps, and for my shower to be made Disabled accessible, because of my legs.
And again, i need friends. I need to know i am not all alone, and that i will never be left all alone to fend for myself.
But i DO NOT need to have anything done to my Autism, because my Autism is fine, just the way it is. It is me, it is who i am, and NO one can or should take that away from me.
I am too hyped up to sleep, yet i do feel very fatigued. I am replaying yesterday’s neighbor drama over and over, still processing—-trying to process—- why some people, and how some people can be so mean, and how lying seems to come so easily to them.
Also, how her daughter can justify continuing to brazenly park her shiny truck right where i get hit in the face with bright afternoon sun reflections, even though i have TOLD them this is a real thing for me, a VERY real sensory THING. I asked her why she can’t find it in her heart to have at least that much of a heart for me—-to just not park there in the afternoons, so i am not forced to have to shut my door when i don’t WANT to shut my door!!
I have to now keep several pieces of cardboard notebook backings to block her sunlight reflections out, and this means me not being able to see freely out my front screen security door.
How is this fair to me?
What happened yesterday? Basically, i was sitting here at my computer and was on Facebook, while waiting for my caregiver/friend, Connie to come. My next door neighbor, who knows full well that i am Autistic with multiple other Disabilities, drove up, as a passenger in her sister in law’s car. Her sister in law was driving.
When this sister in law comes, she always makes it a point, knowing i need my driveway clear for Connie and other company that may come, as it is my driveway, and they are not supposed to use it or block it or park crowding it…….does just that……in the past, she has parked right in my driveway, and when i spoke up about it, she then began coming and parallel parking right against my driveway, blocking it. In addition, she loves to honk her horn…..another thing i hate.
Yesterday, L drove up with her sister in law, and they proceeded to park right in front of my driveway, blocking it….knowing full well that that was the time Connie comes. When i began to yell and scream, she refused to move. I called L over to my front door to talk to her, who began lying saying she wasn’t parked there that long. Sister in law was still outside, now parked normally, in front of L’s house—– and when my discussion with L grew increasingly louder, because i was becoming angry at her lying to me about everything and justifying her daughter having the right to park in front of their house—-L’s sister in law suddenly jumped out of her car, and came lunging, in an angry rage fit, at my front door, screaming and yelling all kinds of mean names at me.
I was trying to tell L that even though her daughter has a right to park on street in front of their house, the sunlight blinds me, and is a sensory issue for me—-and i am asking for this as a reasonable accomodation for my Disability—-that was when her out of control sis in law came lunging at my front door like she wanted to rip it open and beat me up.
When Connie came, she left, but not before laying on her car horn several long loud agonizing times, and yelling at me some more, while making obscene hand gestures too, at me.
The whole incident scared the shit out of me, and i do not do well when people go off on me like this lady did. People yelling at me and verbally attacking me, is also a huge sensory issue for me, and it takes me days to fully get over something like this.
I needed to put this into a blog to help process through this, and to show how we Autistics are still treated by most of society.
To be honest, i do come across many Neurotypicals who are really cool, who take the time to listen and understand me and accept me. But for every cool nice Neurotypical person, there are the ones who are snotty and attitudinal.
I am looking into legal channels to remedy my next door neighbor situation. Because i should not have to be a prisoner in this house that my mother bought for me from one of my sisters to live in so i would never ever be homeless. I am also working with some very nice people from the police dept. on resolving many of my other neighborhood issues that have been ongoing—-the car club and auto shop and warehouse bullies, and their loud hot rodding, loud thunder bass and loud animal noises.
This is exactly the reason why i refuse to live in another apartment where i am in close proximity to the other neighbors that we hear everything that each other says and does.
Living here for the past 24 years (trying living in two other places that were apartments for two short time periods in late ‘93, and early ‘94) has forever ruined me mentally and physically. I grew up being traumatized by family, and schoolkids and school teachers….. and my PTSD from just that runs deep. Add to that, this street for the past 24 years, plus several friendships that went sour because most people don’t do too well with me as i am too complicated for them—-[sarcasm]—-then all of the nightmare caregiver experiences——ummmm, let’s just say, i am still here, but i am deeply unhappy because now i have even lost my physical health——yeah, tension will do that to ya——and i need to move where i can have the sensory peace i need.
I know this was a long read. But i needed to get it out.
I am very low on spoons. I slept all day till almost 6 PM.
I had several dreams that i was looking for one bedroom places on my Section 8 voucher, and all i could find were apartments with people either above, below, or beside me.
IRL i did try living in two apartments just like that, to try to get away from this neighborhood
-----this was in late '93 and early '94-------
--------it was all i could get on Section 8------
-----apartments with stairs right next to my unit, and walls as thin as tissue paper---------
and the noise from my neighbors in both of those apartments, caused me even more BAD meltdowns, meltdowns that were every bit as bad as the ones i was having here due to the Mean Girls who lived next door to me here, who were bullying me at the time---------the Mean Girls who i so desperately was trying to get away from-------
-----------so each time i had to move------------
-----------right straight back to this awful neighborhood--------- i had to come back here to this pit to live again amongst the Mean Girls.
I lived in those two apartments so briefly that it's easier to just tell everyone i've only lived here for the past 24 years. Because i have, for the most part mostly lived here....i tried to make it at those two other apartments in late '93 and early '94----but both were just like moving away from the frying pan into the fire.
I really wish those who build high-density housing, would build with the needs of the people in mind who are going to rent those kind of apartments. The walls need to be thick, with thick noise canceling insulation.....and don't build the units where the damn stairs are right next to a person's bedroom.
Because people don't work well living right on top of one another!!!
I am burnt out. Tired of being lonely with no local Autistic support network Tired of being confined to my house Tired of not being able to go places i especially miss the freeway and open road which i love and the ocean which i also love and getting to see nature, the green hills and flowers of Spring I am so Tired of not being able to reach the goals i have in life Tired of having a family who is virtually non-supportive of me Tired of being unable to take care of my own hygiene Tired of still feeling like i am on the outside even in my own community Tired of just not being able to get where i need to go in life. I am tired of being. All i want is to wake up and find out that i never lost the use of my legs that i still have my little Toyota Tercel and the nice neighbors who once used to live next to me who DID care about me I am genuinely burnt out. I want this suffering to stop. I want badly to move from this bad neighborhood. I want badly to get the surgery i need so i don’t have to wear this 24/7 horrible lump that is the size of a basketball on my left inner thigh I am tired of this trap, this jail i am in. I am crying for a real way OUT!!!!!!! Before i get much older, please.
It really sucks that there are so many hateful people out there who will go to such great lengths to silence those of us who are #ActuallyAutistic, because we show them that we do have a voice and that our voice is loud…….and that we hate blue puzzle pieces and Auti$m $peak$ for a damn fucking good reason.
ABA is ABUSE. Its aim is to make us normal and indistinguishable from our peers,…..as if being Autistic is wrong in the first place. Even so, Auti$m $peak$ supports ABA therapy, and all therapies that are designed to cure and fix us. They say we are damaged goods and call us a disease. When we are not. They support the JRC who uses electric shocks to torment its students.
We try and try to educate and tell the paaaaarents. We are not afraid to call paaaaaarents out who go online and divulge the personal toileting habits of their young Autistic children, without their consent. When those children grow up, they will see what their paaaaarents posted, and be rightfully humiliated.
IT SHOULD NOT HURT TO BE AN AUTISTIC CHILD OR AN AUTISTIC ADULT. Being Autistic is neither wrong nor bad.
But these paaaaaaarents persist. And now one of my dear friends is unfairly paying the price of being forced to be separated from all of their friends, all due to a mean vindictive paaaaaarent. The same could happen to me, as i also started a new Facebook page, and a few paaaaarents are now starting to visit my page.
We create these pages because we have a right to. And we set up page rules for our safety and peace of mind. Those rules, if broken, earn the person who breaks those rules every right to be banned from our pages. Because they broke the rules. So why then, do the moderators get banned off of Facebook for just enforcing the rules? Tell me how that is fair?