Behavior Plan For Parents of Newly Diagnosed Autistic Children

A vitally important read from 30 Days Of Autism By Leah Kelley, for those who want to understand and be a true ally and friend to autistic people. This goes for both autistic children and adults alike.

Do not exploit us and share videos and blogs about our most vulnerable moments, when we are having meltdowns, when we are in any kind of distress. You would not want your most vulnerable times to be broadcast to the world.

It is about seeing our neurology, and our humanity, full-stop.

Thirty Days of Autism

Behavior Plan For Parents of Newly Diagnosed Autistic Children:
  by Lei Wiley-Mydske

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

  • I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about…

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Being Punished For The Right To Live

It’s getting harder and harder for me, a full-on neuroqueer, neurodivergent Autistic adult, to handle going to in center dialysis anymore because the blowups just keep happening.

Four hours a day tethered to a machine, 3 times every week, I do this just to keep on living.

Even after educating them about autism and meltdowns, what they are and aren’t, they still revert back to calling it “behavior” and want to treat me with traumatizing ABA-style “behaviorism” that simply Does. Not. And. Will. Not. work with autistic people.

One cannot pray or behaviorize our autism away because we are hardwired autistic from birth to our final breath.

Autism is a Developmental Disability. It cannot be fixed and cured.

It is always when my nurse and or tech are hectic-busy with other patients and I happen to need help right smack dab in the middle of it all, that tempers tend to flare on all sides.

No one is being bad, no one’s to blame, only that dialysis clinics are often far too hectic paced in nature, and oftentimes fuses just get short on all sides.

I had a meltdown so bad today because

1) Nurse W was there—right in plain sight of me today,

and

2) my room acoustics were not there for me to sing to and enjoy.

(I love to sing to the tune of the room acoustics and call them my “chestnuts” because of how they resonate in my ears and calm me down to hear them—all rooms have room tones, this is why people like singing in the shower)

They were flattened out due to the computer station being moved, changed them so I could not hear them anymore

—my nurse got impatient with me, and I melted down—

—-and because I melted down, they had to take me off the machine and send me home after just 30 minutes on the machine, because I was hitting my head and hitting my chest area.

This is why I keep writing to educate all of you who do not know, how much we are disabled, not by our autism itself, but by the ignorance and impatience that we still get from non-autistics.

So you all will know what to do and say to keep a meltdown from happening in the first place.

I don’t fault my nurse. I fault the fact that there needs to be four nurses per side instead of two, and even more techs than there are per patient. When a dialysis clinic is short-staffed,. even the best angel can lose their patience.

How about just letting dialysis patients all have private rooms with each of us having a dedicated nurse and tech, instead of just lumping us all in side by side by side??? Like some clinics in Europe do?

But still—I have educated this clinic till I am blue in the face, and I still encounter these blow ups. These same and very preventable blow-ups.

Nurse W was abusive. She was all levels of abusive and gaslighty. But she still works there, so I still have to see her from time to time.

But my current nurse does not seem to have even one mean bone in her body.

She happened to be dealing with a new patient today, and because I had flat room acoustics, my anxiety went sky high, and I kept pushing my call button. She finally lost her patience, and scolded me. This led to me blowing up right into a meltdown, complete with hitting myself—I was mainly shocked that my usually mild-mannered laid back nurse was scolding me, when I know she knows how pervasively deeply that affects me.

Below is the poem I wrote to my social worker and to my nurse and nephrologist:

I am sorry, I apologize

I was not feeling well enough today

To be able to remain calm and controlled

In my dialysis chair

In the past two weeks I have discovered

that my chestnut noises are more resonant

and full-sounding

when the computer station is set a certain way

straight, against the wall

I am sorry I couldn’t wait

I am sorry I kept pushing the call button

when you were all busy

I am sorry

That I cannot get along with you all like I would like to

I do happen to love and care about you all

I am not there to cause any of you hell

I am in hell

because this clinic is not made for autistics like me

I do those chestnut noises all during my treatment

to keep myself from having anxiety and then meltdowns

Please understand that

I was upset because all of you kept pushing the computer away

and when you do that

I lose my noises

I am sorry that is so important to me

I like and wish to God In Heaven

that all of you would all like me

and get me

that is all I ask

That you all will learn to get me, please

Please listen to me,

see me,

hear me

I have to have these treatments

so I can live

So that I do not die

Please stop scolding me when I have a meltdown

I cannot help those

I can promise you

They are not a thing I choose to do

If you scold and judge me during a meltdown

It will escalate it and make it go to me hitting myself

I am trying

to educate you on what autism IS so you know

Because of Today I really want to quit dialysis

Not because it’s self pity

but because I cannot always be what you expect me to be

I have bad days

I have days when I have zero spoons

I am tired of going there

because sometimes you are too busy to give me what I need

Tired of making you all angry at me

for what I cannot help

I just am so tired…………

My Latest Medical Nightmare, Because This Review May Get Deleted Altogether By My Local Hospital–Yet Another Example Of Medical Ableism

CW: Detailed discussion of medical ableism in an emergency room hospital setting.

The following is a review I wrote on my local hospital’s Facebook page last night which got hidden for some unknown reason, so I am posting this in my blog so it does not get lost.

Although they do happen to shine in most other departments, and even their ER can be an awesome experience, I do not recommend going to Marian Regional Medical Center Santa Maria’s ER due to the awesome-turned-horrific experience I endured last Thursday, 2/17 to have my chest catheter exchanged for dialysis because I was unable to get an appointment for the cath lab to do it. And it needed to be done ASAP so I could continue my dialysis without interruption.

I went without eating or drinking a full 18 hours so I could get this procedure done.

In the cath lab, I am well taken care of, listened to, and they always remember me. They treat me like the valid human being I am. They take the time to even warm up my blankets before giving them to me. And when I come out of surgery, they make sure I have delicious food to drink and either a Sprite or Coke with ice to go with my sandwich.

In the ER Thursday, I had an almost 4 hour long wait, was even triaged promptly, and when I finally got a room, room 6, everyone was super friendly and I was treated very well, that is, up until the last, after my procedure was done and I came back from my surgery. And they saw that my friend had left for a break.

The nurses I had this ER visit were Melissa, who was consistently sweet, and Makayla and her trainee, Caitlyn. There was also a tall young man, also sweet, and my ER Doctor was Dr. Harmon.

When my friend who I asked to accompany me, left to take a break after my cath surgery, your nurses, both Caitlyn and Makayla, got downright rude….refusing to answer my call button—and on my end I saw NO evidence they were looking for food and something I could drink after surgery. Not even a warm blanket.

They wanted me to stay another long two hours without food or drink to get antibiotics via IV—yet no one seemed concerned that I was suffering from acute thirst and hunger and that me, a Type-2 pre-diabetic, was experiencing low blood sugar.

They were very unconcerned about my comfort and well-being.

I kept pressing my call button because I really needed to eat and drink something. And I got ignored……and then after a long wait while they literally sat outside my door giggling and gossiping—they would finally come in.

But still no move to secure me even a damn cup of water.

My experience in the OR that afternoon went great, and the surgical team all even remembered me and had my alternative rock playing.

But afterwards? Makayla and Caitlyn treated me like I was a mere sack of potatoes.

Also, when I got out of surgery, Melissa was nowhere to be found, even though I kept requesting her.

Both me and my friend kept reminding them I had gone without ZERO anything to eat or drink since the night before.

But I was still beyond hungry and parched from thirst.

I am Autistic, which is a Disability that also comes with accommodations under the Americans With Disabilities Act due to sensory issues, triggers, plus CPTSD, and it cannot be treated with behaviorism, fixed and scolded away.

I made it very clear to every staff member I encountered there of this fact. I always do this for my self-protection. They all seemed to get it, and me. Until my friend took a small break.

The sudden ignoring, giggling at me and giving me dirty looks from right outside of my door., taking their time to answer my call button, their sudden snottiness and snippiness and ableistic remarks…..caused me to become afraid to stay in that room any longer.

When I was starting to become upset due to not eating and acute thirst, and suddenly being treated as Less-Than I was dismissed and told cruelly…Makayla’s exact words:

“I think you need to spend some time thinking really hard about growing up, really, you should try it. It’ll make life better for you, otherwise, you are going to just fail in life.”

Judging others when you don’t know them is all levels of wrong and unacceptable. Maybe I’m not the one who needs to grow up.

It was at this point, I was like “Fine! I’m done!” I asked to have them call my friend back in. I requested to sign an AMA so I could just get the hecky damn outta there.

I only got a bit over an hour of my two hour antibiotic regimen.

Caitlyn then proceeded to throw the barest minimum of discharge papers at me, plus my AMA, without a clipboard, I had to ask for a clipboard—all I got was just my post-op instructions, with no paper record of who my doctors were on this visit, and what meds I was given—like I always get when in the cath lab.

Makayla then went onto told my friend when she came back that she did go all over the hospital to try to find me a good ham sandwich, like the ones I got at my last cath lab visit that were so delicious—- because I cannot handle turkey—yet, I saw no evidence or indication that this was being done.

I am afraid to ever use your ER again. Next time, I will have my cell phone with me.

Thank you for the added trauma. you have added to my already traumatized life.

You need to once and for all fix your still pathetic ER. Or take “Humankindness” out of your name and motto.

Y’all can see my full review on Marian’s Yelp page, as I tried to re-edit the one I wrote to MMRC’s Facebook page, and FB glitched on me and wouldn’t let me re-do it at all.

The above post was hidden, however MRMC did comment, so here is my response to their comment:

I need to know why my post was hidden from your page, please.

In addition, I definitely plan to follow up on this because my ER experience gone *no good horribly bad*, only added to a 62 years long lifetime of real C-PTSD trauma for me that I am unfortunately still processing. Today.

I had to do the AMA because I was frightened to stay any longer after your nurses began being rude and neglectful. This caused me to not receive hour two of my two hour antibiotic regimen that was prescribed me post-surgery.

I have responded to your Messenger message. In addition, I did complete and submit my survey on my phone where it was considerably harder for me to write out the comments I wanted to write. So I kept referring to my Yelp post, as I found this above post to be hidden from your page.

The removal of my valid post silences my valid complaint as a human being who was gravely wronged by staff of your public medical facility. I was not even allowed to post this in a review on your page, so I had no choice but to to post this in your Community tab.

I am an Autistic / Disability Activist Writer / Blogger, so I do happen to write about ALL matters related to our rights and dignity as human beings who just want the same equal freedoms / accessibilities in life just like non-disabled folks enjoy.

That’s not a huge ask.

So many of us with hidden disabilities are treated this way, Othered, gaslit, and treated as Less Than, and by my speaking out, I am helping not just myself, but my fellow Disabled friends in the Autistic /Disability Community here on Facebook, Twitter, Instagram, etc.

You CAN fix this, Marian. It needs to be fixed.


Why meltdowns are not poor behaviour and some therapies are not therapeutic

For those who still don’t get it…meltdowns are not bad behavior…they happen because we have reached overload.

If you care about me, or anyone in your life who is autistic, this is a must-read.

Yenn Purkis Autism Page

Content warning: Damaging / traumatic ‘therapies’

One thing I come across sadly quite frequently is the idea some people have that an autistic meltdown is poor behaviour or them trying to get attention or be difficult or a range of other negative things. I can attest that this is actually not the case and is harmful to autistic people and to the understanding people have of autism. An autistic meltdown is not the result of intentional poor behaviour. In fact most autistic people do not want to have one and feel bad and self-conscious if one occurs.

So what is an autistic meltdown? Basically is it what happens when a person is overloaded. Usually the overload comes form things like too much – or unpleasant – social input, sensory overload or emotional overload (such as can be caused when someone has hyper-empathy and is around another person who is distressed…

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I Don’t Prepare My Autistic Children for the Real World Because It Doesn’t Exist.

Not an Autism Mom

Guest Post by Kimberly Collins

The real world won’t coddle your child like that.

You’re doing a disservice to your child. They won’t be ready for the real world if you let them get away with that.

Things don’t work that way in the real world.

These are just a few statements parents of autistic children hear from professionals, teachers, and well-meaning, yet intrusive family members when we parent our children in a compassionate, respectful way.

Apparently there is a defined real world out there that everyone – but us – got the memo on. But what does that mean? Actually, scratch that question. Unless you’ve ever recorded a song while singing and walking down the middle of a bowling alley with a camel next to you, I’m not interested in your interpretation of the Real World. “

If you don’t get that reference,

  1. I hope I at least…

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Different social skills, not a lack thereof.

Speaking of Autism...

I’d like to preface today’s post by introducing you to an in-real-life friend of mine named Chris. I’ve known Chris for quite a long time; we first met in first grade when we were just six years old. We were alright friends in early elementary school. I remember going to a few of his birthdays and I have an oddly specific memory of being “reading buddies” in second grade. I changed schools in fourth grade and fell out of touch with him for a long time, which was a mistake. About two years ago I was looking to find a friend that lived closer to me, found Chris again via Facebook, and now via the wonders of the internet we’re really good friends again. You can see in the images below what ten years of difference looks like. (I’m the redhead, by the way).

Quincy and Chris 2009 Spring of 2009 in 1st grade…

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How I felt In 2013, How I Feel Now About My Family

This post is derived from a post from November 2013 that came up in my Facebook memories this morning about the biological family I was borne into.

Because the holiday season always brings old family memories to the surface. Whether good or bad.

Some of us are blessed to have supportive accepting families.

Some of us…are not..so we create chosen families where we do fit in and belong. I now have a wonderful chosen family made up of my two current caregivers, and a handful of close Facebook friends.

And it is even worse when you were born fully neurodivergent instead of neurotypical. And you grow up feeling like you are an outsider, like you are never good enough, and you don’t fit in or belong anywhere. Because you’re thought of as too weird and too different. And yes, even the dreaded R word.

Othered. Less-than. It. Retarded. Please know why that word is a bad word and don’t use it anymore, even as slang, because it is a Disability slur. It is every bit as bad as the N word is to Black People.

I do want to say this: Part of my family do accept and support me—my mom, and two of my sisters: my second eldest one who lives with my mom, and my eldest one who lives in Arizona.

The one who live in AZ, I was very, very close to as a child, but then when I entered high school, she and I grew apart, and did not become close again until 1994 when, at the encouragement of my then psychologist I was seeing at the time, I wrote a long open letter to my whole family to let them know how much they have hurt me, and my eldest sister was one of the only ones who took my words to heart, and she was able to call me and fully acknowledge and deeply apologize for her part in all of my hurts from my time of growing up in the Fields Family.

The following is a post I wrote from November 2013 that came up in my Facebook memories this morning. It was written on Thanksgiving Day 2013, or rather what I now refer to as Indigenous People’s Day Of Mourning. Because even though I still celebrate it to give thanks for my many blessings, and to eat good food, and hang out with my chosen family, I now know the true, and sadly, very ugly history behind this holiday, and you should Google it too, just Google #WeLiveOnStolenLand, Indigenous Day Of Mourning, and what you need to know about what really happened on Thanksgiving Day.

But that is for another day for me to blog about. And I will.

My post, re-edited, from November 2013:

I am still seriously sorry I was born into my particular biological family….and wish I could just divorce most of them.

Today, trying to talk to my mom, she reaffirmed just how much my middle sister who has me blocked on Facebook still holds me responsible for her suffering all of her life. This sister thinks that I “act” the way I do on purpose, and seems to feel as if I am a burden to be ridiculed, shamed, shunned and ignored by my family.

They just seem to want me to go away silently.

I am not going to do that.

I still to this DAY, wish to God I could be adopted by a nice family who will help me by being here for me and helping me to finally get the help I need so I can work to salvage what is left of my health, life, and joy.

My middle sister never has liked me. But it’s totally on her. I did nothing to hurt her, except to be born the completely neurodivergent goofy silly Autistic me I have always been. Growing up, I was merely reacting always to the way she always beat me down with her words and her intolerance of me, all of my life.

She would never let me touch her hair, which was long reddish-copper-auburn and silky shiny. Shiny hair has always fascinated me to a level of excitement that only an Autistic person would understand. Shiny hair has always been one of my main go-to Autistic stims, and she hated me for it. Hated me for all of my goofyness. Hated me because of how I drew all the time, and how I was always drawing pictures of my imaginary friends. Imaginary friends I have always turned to to cope with a fully ableistic world that still to this day does not get autistic people.

All of my life I have felt I was the cause of my family’s stomach aches, headaches, and anything negative that happened to them. I was always told that too. My mother would often refer to me as her penance. Yes, there were often times when my own mom would turn against me. Which only added to my hurt and trauma.

I always felt like I had to apologize for just being me. My mom, whom I love dearly, and who, for the most part, IS in my corner, even was always very embarrassed by me. Because I have always had a loud voice, and have always been a very forward and outspoken person. Like, no filter outspoken.

My father? Was a monster who I both feared and hated, because he never accepted me. I was beaten, thrown in my room, screamed at, roared at, even for my likes, quirks, and opinions because they always differed from his narrow conservative intolerant ones.

Yes, he put a roof over our heads, fed and clothed us. But if he didn’t like you, he came down HARD on you with hellfire and brimstone and death. That is how I always felt around my father. Like I was always <thisclose> to death itself.

I was never allowed to talk at the dinner table, other than to say “Please pass the salt, please pass the potatoes” type of thing. I would get sent to my room, and / or spanked. Worse yet, he would pull hard on my ears, or my hair really hard to get me to mind him. He would also hit me on my face and head. If I didn’t do as he said, he would beat me and throw me in my room. I couldn’t even joke with him. Or show him a drawing at the dinner table. That would get me beaten and thrown into my bedroom with the door locked—from the outside.

He hated it when I would walk in front of the TV when his football and baseball games were on, even though the bathroom was in the path of the family TV.

In sixth grade, through the end of my Freshman year in high school, I went through a long period of time where I was quieter, and more afraid to talk and be myself because I was tired of being chastised and told how weird and different I was.

This was from 6th through 9th grade, then in 10th grade, I began running away and having explosive temper spells, and meltdowns. I would regularly break chairs and kick holes in doors and walls…..because I was never being heard and listened to.

It was unbearable frustration for me to be in a family with so many hierarchies, so many unwritten rules, and do’s and don’ts, that it caused a great volcano of anger in me. Anger that stemmed from all of the hurt and rejection of me as the person I was.

I ran away four times that year, because I longed to find a family who would see me as a human being and take me in. I felt in a new family, I would finally be loved, finally be accepted and that I would finally be popular at school too.

Also when I was a sophomore, right when school began for all of us kids, my little brother suddenly without explanation or reason, became a literal angry demon towards me and began glaring at me every night at the dinner table.

He would growl diabolically at me, and say things like “Huuuumphaaaaaa!” and call me names like “Pig-aaat!” And say, over and over again, that I was not a part of my own family.

His whole face would contort into such hate it frightened me to pieces. It got so bad, I began to eat my dinner every night in my room. I had to literally beg my mom to talk to him to make him stop this. And he wouldn’t. He was eleven. I was a Sophomore in high school.

I couldn’t even watch TV with the family at night anymore because of how he began treating me. I had to miss shows I loved, like the new “One Day At A Time” show that came out that year on CBS, that had Mackenzie Phillips and Valerie Bertinelli who starred as two teenagers of a single mom who lived in Indianapolis, Indiana.

At Christmas that year, I did participate with the family, but my eldest sister, the one who now lives in AZ, who I was NOT getting along with at the time, placed a huge box right in front of me, cutting me totally off from the others when we were all talking at our dinner table after dinner and the opening of our presents.

Deeply hurt, I went into my room, in huge heartbroken tears, and my middle sister who has mostly blamed me for all of her suffering, the one who today has me blocked on her Facebook, actually saw my eldest sister do this, noticed how I immediately got up from the table to go in my bedroom, and she came into my bedroom along with my mom, actually FULL of compassion for me, and promised me from then on, she was going to be kinder to me, and not do things to make me feel left out anymore.

I got along very well with my middle sister from then on, until 1991, when she moved to Idaho. From then on, she has slowly turned against me again. No, it didn’t happen all at once, but as I kept calling her to complain about the bullies next door, and across the street, it seemed to sour her on all things me again.

The majority of my Sophomore year of high school, I continued to have to spend most of my time in my bedroom after school, and still could not even watch TV with the family because of my little brother and how mean he got towards me, with the awful looks and awful remarks he would make.

To this day, I am fully estranged from him. Even though he did realize how mean he was being the summer after my Soph year, and he stopped for awhile, when he got married to his second wife in 1989, he began to shun me, and began telling my mom, his new wife and his two kids even, that he was afraid of me because of how I began to pick on him after he got mean to me. He says that I was mean to him.

It was my reaction to how he was suddenly treating me, because I literally couldn’t handle it. It was too much for me to bear being in the same room as him when he was in demon mode.

Remember, he was eleven when this happened, old enough, I felt, to know right from wrong, and he chose to literally cause me to have to self isolate for one whole year of high school and then again, the first semester of my Senior year, when he again went into demon mode on me. When I was a senior, he already knew what it did to me when he would go demon on me. He already knew how it literally sent me into a full mental tailspin. He was thirteen then, and he knew.

This time it wasn’t just me, but he also went full-on demon on my sweet angel of a friend Kathy who would have never hurt a fly,….and treated her mean too, when she came to stay with me to go to a family reunion with us.

In 1999 when I drove all by myself to visit my family who most of them had already moved to Idaho, my brother avoided me completely.

In 2005 when my mom was here visiting me from Idaho (she moved there too in 1996), she was talking to him on my kitchen phone one afternoon, and him just hearing me in the background, yes, I was having a meltdown that afternoon because of a thing my mom had done to my bedroom drawer–she had gone in and rearranged it without my consent, and him hearing me upset, he literally told my mom that if I moved to Idaho, he would have to stop having the family barbecues. Because, as he told my mom that afternoon, my being there would ruin the family BBQ’s for him. In other words, even in 2005, he still did not consider me to be a part of my own family.

The ONLY things I am guilty of with my baby brother, is becoming hypervigilant with him after he suddenly turned on me my Soph year of high school–meaning, yes, I did begin picking on him to make sure he would not be mean to me ever again, and when he would get mean behind my mom’s back then lie to my mom about it–well, that made it all the worse for me. Because my mom would believe him.

And, also, when we were kids, I loved my baby brother. He was my playmate, my best childhood friend. And yes, when I began going through puberty, I did start pushing him away…..because, well, puberty was happening, and I wanted to be like all the OLDER kids in my family, not him anymore. If only I could go back and undo me pushing my baby brother away, when all he wanted to do was play with his kid sister. Because he had been so used to me playing with him all the time….when we both were children.

So yes, I am guilty, of pushing him away, when he wanted to play, and then of picking on him after his demon mode began manifesting.

And to my baby brother, I am so, so sorry for pushing you away, when you still thought of me as your kid sister. Can you ever forgive me for my cruelty, for shutting you out of my life the way I did?

My sister, the one who has me blocked on her Facebook? Has reverted back to hating and blaming me for all of her suffering. To my middle sister, whatever it is I did to cause you so much agony…I still don’t know or understand to this day, but If I ever did do or say anything to hurt you in our times together as a family, I am also sorry and ask for your forgiveness.

I’m not writing this, nor writing my life story, to maliciously bad-mouth my family. It was NEVER my purpose in going online first on Tricia Kenney’s BlogTalk Radio Embrace Autism Show, and then in blogs, and more radio shows and YouTube videos. My reasons for telling my particular life story, have always been, and are, purely to educate you who read and listen, on how it is to be Autistic, and also so my bio family finally gets why I was the way I was, and will finally stop hating and shunning me for it!

I didn’t find out I’m Autistic until a week before I turned 39 years old, in May of 1999. Back then, I got labeled as having Asperger’s, and now I hate that term and reject it as the one who invented the term, Hans Asperger, was a Nazi who hated Disabled people.

I am also non-binary, and queer. I have always felt sexual attraction to all genders, not just cis hetero male.

Today, I also have end stage stage five kidney disease, and have been on in center hemo dialysis for three and a half years now.

As I have grown, I have had many more traumatic experiences with past caregivers, and past friends, who either could no longer handle being friends with me or just were total douchebags. Many of these experiences were very scary, and they have also contributed to the C-PTSD trauma that I walk with today. I have deep trust and abandonment issues today and am ultra sensitive and hypervigilant because of how so many still don’t get Autism or Autistic people.

So, this is why I write. Because my pain, this pain I carry, is so deep, pervasive, and never-ending.

I am not a monster. I am Autistic. I was born Autistic. I am going to die Autistic. There is no cure or fix for my Autism…and no one should try to cure and fix us.

Every holiday season I mourn for what I could have had with my biological family all those years and seasons—for what I still could have—if only we could sit down and have the hard conversations that it’s going to take, and not walk away, but face it all, once and for all, what was done, what was said, what we all felt, just get it out in the open.

I am willing. I don’t know how much time I have left on Mother Earth, and I want to make the effort to try to heal what happened between me and my middle sister and the two brothers I have left on Mother Earth. I now that my eldest brother who is now in Heaven now knows, because I know he comes to visit me now that he is on the other side. I think he has become one of my Guardian Angels.

I feel my late brother Ed’s presence quite often ever since his passing in May 2018, especially when I am in distress, when I’m sad, hurting and depressed and I just feel like I want to give up on everything.

It is because of him, my mom, my two sisters, my two caregivers, my one caregiver’s son, and the friends I have made through Facebook’s Autistic / Disability Community, that I have not yet given up.

Thank you, and Happy Holidays.

Why Social Skills Training Does Not Help Autistic People

For the love of God, all of this!!

If you really want to understand autistic people, meet us where we are at. Stop tryna change us. Listen to us. Believe our stories and lived experiences.

Being our neurodivergent selves Is. Perfectly. Okay.

We aren’t broken.

Tryna change who we are will just give us unneeded depression, trauma, and lead to us wanting to just give up.

Autistic Science Person

To explain why most general social skills training taught to autistic people is not helpful, I will show a simple example and give a critique. I will be referring this worksheet by Social Thinking which is public.

If after you read this post, you want more information about what you can do to help and understand autistic people, here are some ways to help.

An Example and Critique

This worksheet created by Social Thinking is titled “Social Behavior Mapping.”

There are two conditions in the worksheet. The top condition is titled Expected and the bottom row is Unexpected. Each condition has the same 4 columns listed from left to right:

1. Behavior(s) that are expected given the situation and people
2. How others might feel about the behavior(s)
3. How others act or react based on how they feel about the behavior(s)
4. How one might think or feel based…

View original post 861 more words

Full Documentation Of My Past 10 Months At Dialysis

#MedicalAbleism #MedicalAbuse #Gaslighting

Folks, medical ableism is very real, and this is what I have been having to endure at dialysis for over a year now…..and my clinic still won’t actually address this nurse who is still continuing to make my life a literal living waking hell.

I know this is a long read. But please read this and share this widely. People need to know what it is like to continually to be treated like I am a bad behavior when my autism is a disability, and how utterly isolating this is—to need dialysis to stay alive in a clinic that is not at all built for accessibility for autistic people.

#MedicalAbleism#UnseenUnheard

When, even after I have bent over backwards to educate my dialysis nurse about my autism and neurodivergence, my dialysis nurse still:

*One Saturday in December of 2020, repeatedly slammed shut the ISO room door on me when I kept melting down because she kept yelling at me and scolding me, and saying I needed tough love and ABA for my “disruptive behaviors”, then months later when this is again brought up, tells me: “Oh, but I didn’t slam your door! I wasn’t the one who slammed your door! It was the tech who did! You’re remembering things wrong!”

That is what gaslighting is, folks. And gaslighting is abuse.

*On that same Saturday, what started my Saturday afternoon long meltdowns, was when she was prepping me to get me put on the machine, I asked her if she had read my list of autistic resources, she said to me: “Oh, well, okay, I did read ‘some’ of it, but I’m not going to follow much of it, because I also saw these ‘other’ videos that tell me I am to treat you with tough love, and not give in to your ‘behavior’.”

When I tried to tell her why ABA is not the way to treat ANY autistic person, she replied with: “I am a professionally, medically- trained nurse, so I am going to go with what is ‘evidence-based’.”

THAT, exactly, was why I was having so many meltdowns that Saturday! The Saturday that started all of my problems with Nurse W! It threw me into a panic because she wanted to treat me with literal ABA therapy! Because she went right to the pro-ABA videos. That I had asked her not to watch. And believed those over actually autistic people who have BEEN through ABA therapy HELL.

This was how my family treated me when I was growing up, and none of them knew I was autistic, just that I had childhood schizophrenia, and a “perceptual handicap”….the terminology of the ’60’s.

I was treated this way all through school. By most police officers. Because yes, I have had to deal with alot of police. I was also treated this way by most people who tried to befriend me. And by a long string of abusive caregivers when my physical health began going downhill.

And it traumatized me, over and over again, and gave me lifelong deep-seated trust and abandonment issues, lifelong self esteem issues and lifelong Complex PTSD—on top of my autism.

*On that same Saturday in December of 2020, also yells at me because a kind tech turned the horrible bright lights off for me because they were literally hurting my eyes, and she, the nurse comes in and angrily snaps them right back on, yelling at me for having them turned off.

(I get that it is state law to have a VERY well-lit dialysis clinic,, but why keep yelling at me and scolding me like I’m a little child being punished, because the damn bright LED lights are literally HURTING MY EYES????)

*Calls me paranoid and says it is all in my head when I tell her
my heparin is not running in the machine
or I am having weird heart palpitations,
or my machine has been set to take off much more fluid than I KNOW my body can handle at one time.

*Every single fear, question and concern I have as a patient is dismissed as me just imagining things, it’s all in my head, I’m being paranoid, or “I’m the nurse, I know what I’m doing, so be quiet”—and my questions and concerns go unanswered.

*Turns the machine monitor away from me suddenly, when she knows that is also a trigger, to not be able to see my machine’s monitor, then yells at me like I’m an unwanted dog to “get out of here, go to the bathroom now!” in a scary mean yell voice, when I protest about my machine monitor being moved so I can no longer see what is going on.

*Won’t let me write what I want to write on my Against Medical Advice form and gets angry about it telling me:

“Okay, you need to stop! Oh…that’s it! I no longer trust you. Our whole friendship is going to be much different now. You’re not going to get any of the perks and goodies I’ve been giving you anymore, things are going to be much different now, you have lost all of my trust in you!”

That is a literal threat, folks.

When Nurse W presented me with the AMA to sign she had written “refusal to let closing nurse do her take-off” on it, so I crossed that out, and went to write a less accusatory and judgmental version.

That pissed Nurse W off, and she began saying the horrible things she said to me above.

*Still orders me in a loud strict yelling voice that she knows upsets me: “Put your mask on!” when I genuinely forget to put it on.

*Keeps labeling me as a refusal this, a refusal that, and then throws in non-compliant and high maintenance when I have asked her NUMEROUS TIMES to stop labeling me those things!

I am autistic,
I am wired differently

and this whole dialysis clinic is a daily sensory NIGHTMARE for me to have to sit in for four hours a day 3 times a week.

*Tells me, with glee, like she is threatening me with punishment, that she is a mandated reporter and has to report what I have just told her, to the authorities, when I tell her I feel like I want to die, instead of talking TO me COMPASSIONALTELY to find out why I am feeling like I want to die—or getting the social worker so I can talk to them about why I reach the point of such overwhelm that I want to die—and I am left feeling totally unheard and invalidated yet again by my nurse.

*When one day I say out of my desperation I wish I would just crash on the machine today, and she uses this to threaten me that she cannot dialyze me when I tell her things like that—-instead of talking TO me and finding out why I feel this way.

*Repeatedly calls me paranoid, repeatedly tells me I am imagining things, repeatedly orders me around in a stern voice like I am still in grade school—and does this—over and over and over again till I just want to scream.

*On yet another Saturday, Saturday 9/11, she threatens to call the police when I am having a meltdown for being punished yet again by her, when I am just trying to show her how to wrap the ends of my catheter because she is doing it literally all crooked like she knows how I hate it done.

*On that same Saturday, tells the nice tech to not ask my permission anymore to take my temp, when it has been written in my plan that all of them are to ask before they just do things to my body. Using my boundaries, my right to my bodily autonomy, and my very sensory needs as weapons to punish me when I am “acting out”—her words.

That, also is emotional blackmail, and is all levels of abuse.

On Saturday 9/11, she and I were both on edge. I came in already upset. Because my house had a million nats in it that morning.

What made her take me off of my machine a whole hour early that day? It was not that I was scaring one of her new patients with my meltdown——it was actually because I made the statement out of sheer frustration at being barked at by her to “Put your mask up!”—instead of her asking me gently——when she came into see why I was melting down in the first place. Which was because I could not get my backpack off of its tray table. My backpack was stuck. I could not get it off the tray table.

I made the statement: “I am done.” That was her MAIN cause to yank me off of my machine and totally disregard my sensory boundaries and face.

She keeps on treating me like I am a bad behavior instead of an autistic 61 year old struggling to cope with a clinic that is NOT AT ALL set UP for autistic folks.

It is literally as if she looks for reasons to yell at me, scold me, and shorten my treatments.

For four whole months—from December 2020 to April 2021—she would put me on late, and then I would have to leave early, often 1 to 2 hours early, because she would sit at her computer and wait until 1:30 to put me on.

She as well as two other techs all huddle together, and it is like they look for ways to antagonize me into a meltdown, just so that they can then punish me. And then laugh and gloat about it.

This happens mostly on Saturdays when management and social workers are not there, but has also happened on Tuesdays and Thursdays as well.

So. After reading all of this….please try to put yourself in my shoes.

Would these things not make you feel like you can no longer trust this woman, this nurse, to take care of your dialysis treatments?

Would these things not make you terrified to have this nurse take care of you anymore? Especially since you are away from everyone else in the isolation room so you can still do your vocal stims that help keep you calm enough to get through 4 hours of being literally tied to a dialysis machine, and, because you are in the ISO room, you don’t have to have your mask on when people aren’t in the room with you?

I would have put my mask up, but please, for the love of God, ask me nicely.

She can be nice…very, very nice and sweet, but then these trainwrecks happen and actually ruins all of the nice times with her.

But, tell me, please…..Would this not make you feel like you do not matter as a human being to this nurse???
Would this not make you terrified to ever be alone in the room ever again with this nurse???
Would this not make you feel vulnerable???
Would this not make you cringe when you now have to even hear this nurse’s voice????

Does all of this not go against the patients’ rights, of which your clinic gave me a copy of when I first signed up for dialysis treatments at this clinic?

I am Autistic.
I was born Autistic.
It IS a whole different way of being,
processing,
and experiencing life
for those of us who are Autistic.
And we will be Autistic till the day we die. You cannot yell, scold, fix, problem solve and cure our autism.

When you yell, it literally is like we are DYING. Your yelling tells us we are wrong and broken. Shameful. And Less Than.

Autism is a disability. A disability that is protected under the ADA.

Ask yourself again, would YOU want this nurse to continue to work on you if YOU were autistic, and she kept treating you like you were a fucking criminal instead of the Autistic adult human being you are????

She may be a new nurse.
She may be human.
She may have a problem with anxiety when under stress.

But guess what? So am I….
Still a new patient
I am human.
I have a problem with anxiety when I am under stress.

I don’t like having meltdowns. I know it frightens the other patients. I try my best to handle having to be strapped to a machine in those uncomfortable chairs for 4 hours.

I try my best to always be considerate and kind to everyone there.

I bend over backwards to meet you all halfway there at this clinic.

Because I DO care.
I DO have compassion.
And great empathy for others besides just me.

I GET it that that one Saturday was 9/11. The 20th anniversary of a horrific event that I also saw happen before my eyes on live TV. Many of you lost loved ones and friends on that awful day.

God, I GET that so hard!!!!!!!!!!

But that was still no reason for Nurse W to yell at me, and scold me, and then yank me away from my lifesaving dialysis—-just for me saying “I am done.”???? Her words, again.

Tell me why, please, should there be any valid reason to repeatedly keep punishing me for what I cannot help as an autistic who has to undergo this dialysis just to live. In a building that is not set up for autistic people?

Why does this give nurses like W the right to continue to treat me like I’m a bad criminal, instead of an autistic adult who is more often than not, in a consistent state of sensory overwhelm when I have to go there to do my lifesaving dialysis.

Especially after I have educated this nurse over and over and over and over and OVER again???

Tell me. Please. I am waiting and I am listening.

A post script: They have, temporarily given me the head nurses as my nurses, and Nurse W was gone last week, but yesterday she was back on, even though she didn’t take care of me, one of the head nurses did—-even so, I still had to se and hear Nurse w’s voice, and it killed me to be in that room still having to see and hear her.

I am still waiting in suspense as to how this is going to be handled.

And another post script:

I am done with my piece of crap dialysis center.

They are moving me to Mondays Wednesdays and Fridays in the mornings beginning the week of Oct. 6th. Exact time to still be worked out, but hopefully a 9:30 AM arrival time, and a 9:45 AM put on time…this way I still have my afternoons to get all of my appointments, errands, grocery shopping, banking, showers, etc., done.

I will still be in the ISO room. But with a different nurse, and different techs. Meaning I have to be up earlier, there earlier, nd no more of me having to be there on Saturdays in the ISO room with Nurse Whitney…at Nurse W’s mercy.

It appears nothing is being done to address Nurse W’s abusive treatment of me.

I have warned them that if Nurse W can treat me the way she did, she will do this to the person who goes in the ISO room in my place.

Nurse W seems to love being the boss of me, well, now she got her damn way.

My Autistic Dialysis Hell, Part Two, And A Monday Afternoon Update

Saturday morning started with me battling multiple nats in my living room and kitchen. And my bathroom too. The nats have been all over for days now.I was already on sensory edge about the nats flying all over my house yesterday.

I went to dialysis on edge.

I had meltdowns at dialysis because I had yet another different tech in my pod. And my nurse Whitney was also on edge. When Nurse Whitney is in a bad mood or stressed out, I always pay. Because I have multiple vocal stims, I do my dialysis in the isolation room, and Nurse Whitney feels she can get away with mistreating me because she feels no one will hear. Because I am in the ISO room.

When I am already high anxiety, it has a rippling effect.

At dialysis my lines were unruly, and had to be adjusted alot. I finally had them lay them across my lower abdomen, because to keep them clamped to my left shoulder, made the white line cap for lab draws cut into my shoulder, and it was painful.

Nurse Whitney was impatient with me about having to readjust my lines so I could be comfortable in my dialysis chair.

Dialysis was me having alot more meltdowns.

I have begged them to assign another nurse to my side of Side B, one who would have patience and understanding and who would work with me and really listen to, see, and hear me.

Instead, I am stuck having to work with a nurse who lets me know consistently that she has problems with me because of all of my ISMS. I have been having problems with Nurse Whitney since December 2020.Towards the end of my treatment, with one hour and five minutes to go of treatment, I went to get my backpack from the tray table on the left side of my chair so I could call my caregiver to discuss my dinner meal plans, and the strap stuck on the side of the tray table. Before I had a chance to think to just press my call button for help, I began yelling in my frustration, plus profanity along with my yelling.

When having meltdowns, I cannot control what comes out of my mouth.

Please. Read that again.

What ensued, instead of Nurse Whitney coming to help me with my bag, was Nurse Whitney becoming impatient and yanking me off of my dialysis machine ONE FULL HOUR before my finish time. As a result, I got 2 hours and 59 minutes exactly of my prescribed four hour treatment, and when I fought to be kept on the machine, and she kept touching me without my permission, HER response was to threaten to call the police on me. Just like I was a criminal.

She kept putting her hands and arms close to my face as well, which she is WELL AWARE is a huge sensory trigger. Yesterday, she didn’t care. She even told the kind tech who came and asked me if she could take my temperature, to not bother to ask my permission for that, that she didn’t have to ask my permission, to just go ahead and do it…take my temp.

For the love of God, neurrotypicals, I need you to understand and GET that we as autistics are wired totally different than you. Our sensory needs are important for you to accommodate, because if you don’t, we are triggered into literal painful agony. Our sensory systems are wired much differently than yours are.

I have bent over backwards to try and educate you all, both through Facebook, and at my dialysis clinic for the past 3 years I have been going there to get dialysis, and still some do not get it that autism is a disability because of sensory needs not being taken seriously.

I need to get my story out there, friends. This is already ruining my weekend, because, and listen, really listen to when I say this, one does not just get over being manhandled and then threatened with the police who can escalate things even more to the point where we run the risk of being injured or even killed by the officers who come to supposedly diffuse my meltdown.

Calling police on us when we are IN DISTRESS, is the last thing one should ever do. There are ways to de-escalate meltdowns that do not and should never involve restraint, scolding, seclusion, any kind of threat or punishment.

I feel so utterly alone today. Like this is only going to get worse, until someone takes seriously that my nurse is abusive, and she needs to actually be fired.

In addition, she forgot to give me my hepogen and hectoral, and my heparin lock for both the veinous and arterial sides of my catheter at the end, and when I went to the bathroom during my treatment, failed to put the machine in bypass mode.

This is not the first time I have caught Nurse Whitney making mistakes with my care. I once caught her setting my machine to pull a full two kilos of fluid, knowing full well this would land me half dead in the hospital. One reason why I request to always have my machine facing me is, so I can watch everything, to make sure it is all correct.

My story of yesterday is all up and down my Timeline. It is all set to public and is very shareable.

I am asking all of you to please share this and put my story in your blogs if you have a blog. #MedicalAbleism is real, and it is happening to me, just trying to stay alive because some do happen to love and care about me…..my mom, my two sisters, Connie, Natalie, and my Facebook autistic disabled community friends.

Below is a post I made to an advocacy org that apparently is no longer in service…..so here it is, here:

” I am a 61 year old autistic adult who has been on in center hemo dialysis since June 2018, and a DaVita patient since July 5, 2018.

Although I have spent the past 3 years breaking my back to educate all staff and nurses there, plus the facility admins, I have been having serious issues for the past two years of my 3 years there, mainly due to impatient insensitive nurses, including the one that has been assigned to my pod for the past year.

For the past year, they have had me assigned to a nurse who for 11 of these months beginning in December 2020, she will sometimes be very curt with me, forget my sensory needs, and cause me to have meltdowns.

She has threatened to withhold nice treatment, her “friendship”, and in Dec., she made it her mission to keep shutting my door on me so that no one could hear my machine if it alarmed. If I have concerns or questions, it is met with “I am your nurse, I know what I’m doing!” and “You just don’t concern yourself” and gaslighting “I did put the machine in bypass mode” or “I did do that, didn’t you see?”

My story is on my Facebook. My local ESRD has been of precious little help.

You can contact me via my email. I would give you my contact phone number, but do not know if that is allowed via email.

Thank you, and I fervently hope you will help me. “


I probably won’t be alive by Halloween of this year, if my kidney center has its way in shoving me out the door. I may be dead within weeks. I don’t trust corporate healthcare. Or my kidney center.

I Have A Right To Exist
And Be Seen And Heard
As My Full On Autistic Self
And I Have A Right
To
My Lifesaving
Kidney Dialysis
All Four Hours of It.
Stop Taking That Away From Me
For Meltdowns
That Are Being Caused
By
Your
DELIBERATE
Inability And Refusal
To See, Hear, Embrace,
And Respect Me
As I Am.~~~Melissa Fields

And an update from today, Monday, September 13, 2021:

Update on my dialysis center / nurse issues:

I have a 12 PM noon meeting between me, my caregiver Connie, my kidney center social worker, the kidney center facility admin, and my nephrologist, tomorrow before dialysis.

I pinned my social worker down when I talked to her just now as to if they are planning to involuntarily discharge me?

Thankfully the answer on that score, is NO.

Social worker says they are doing this meeting so we can all as a team, come up with a plan so that both staff and I can feel safe during my time there getting treatment., moving forward.

I was also adamant that I can no longer work with Nurse Whitney. I’ve worked with Nurse W for a year now, and still my issues with her keep happening because she basically does not care.

Whitney and a few others seem to believe fully in the adage that “When the cat’s away, the mice will play.”

Stay tuned, everyone.