Monthly Archives: November 2015

My Health, And My Words

I, an Autistic adult, turned 55 years old in May.
My physical health is not good anymore.
My legs are still swollen; i still have the awful
huge lymphedema tumor on my left inner thigh.
And it is getting bigger.
I also weigh 350 pounds now.
I went through alot of heavy things beginning in March of 2012.
In that month, my next door neighbor, and friend
who i had had many problems with during the course
of our six year friendship before our final falling-out,
suddenly turned against me for no reason at all.
He said it was because he was not going to run my errands
when i didn’t feel well anymore.
But i knew it was deeper than that.
He actually couldn’t stand me anymore.
And his hostility and hate really cut through me. I could feel his hate for me through every fiber of my being.
So i knew he hated me.
All of the other times we would have our fallings-out,
We would always mend our rift and things would be
good again for the next two to three or so months.
But this falling-out was radically different…..and……
…….this one was worse and darker than all of the others.
He got very mean, and began doing some of the
things he knew were triggers and sensory issues to me……
The loud golden oldies music that
made me relive my painful childhood,
his loud TV turned up loud, and his suddenly loud banshee yelling,
followed by several ugly emails where he slammed me and said i was
essentially a worthless piece of dirt who was lazy and
who had zero value.
He even threatened to call the police on me if he heard my music or any of my meltdowns.
He also went to all of the businesses where i was having problems with employees and their friends who were bullying me (and still are)
to let them all know i was making videos.
I suddenly began getting alot of hate comments on those videos
and even had to take some of them down
as he himself would flag them and threaten me
even though i needed to tell my story
He was done with me. Done.
I have deep PTSD and trust issues from childhood because so many people don’t understand Autism, and we get mistreated, misjudged, attacked, accused of, called tragedies and burdens, and essentially thrown away in the trash.

My mom could not talk to my friend this time. No one could.
His mind was made up.
My whole world collapsed around me, and i suddenly became afraid to step foot out of my house or drive anymore.
I began to have horrible frightening nightmares about him,
and night terrors.
I cried alot. I went into very deep dark depressions.
I began to fear i was going to die and go to hell like he
had told me i was headed to, in one of his awful emails.
My leg tumor which had developed a year before, got bigger,
and my legs swelled even more
He moved out that April, and on his last day here,
he stood outside and glared at me before leaving.
Thankfully, i had finally found a nice caregiver to take over and help me.
She helped me with my housecleaning, cooking, dressing, bathing, showering, all of it.
I sold my little white ’95 Toyota Tercel 2 door coupe that summer.
I have not driven since April of 2012.
I lost the ability to handle driving.
And then my caregiver turned very moody and mean, and i suffered another huge mental blow, so bad, i ended up chopping off all of my beloved dark red hair.
It has grown back again, but i still go through spells of frustration where i want to chop it all off again.

Since then, i have been through several very abusive caregivers
who would grill me about my meltdowns, demand lots of money from me for gas, and other mean things—-some of them would really yell at me
and i also went through more friendships that never lasted.

Today i finally have a kind compassionate caregiver who
Has become a real true friend and ally to me.
But when she is not here, i am all alone and lonely, sleeping all of the time now, and
i now feel dizzy alot, and just…..just…..really tired.

I come from a large family, but only have acceptance and love from my mom and two of my three sisters.
I call my mom every single day, and sometimes more than once a day if i am in alot of distress.
I have absolutely no contact or relationship with my three brothers, my other sister, nor any of my nieces and nephews. In fact….the one sister and one of my sisters-in-laws has me blocked so i cannot contact either of them.

I am writing this because to be honest, i feel like i am going to die soon.
And i want you all to know a few things……God puts us all on this earth, and we are all different…..
Some of us are disabled and require more care, patience and understanding.
But that does not make us bad or wrong….or less-than.
If any of you have a sibling, relative, or friend who is disabled…..
we cannot always be fixed or cured.
That does not give you any right to abuse us, and give up on is, and do it in a way that is mean and demeaning to us.
It does not give you a pass to ignore us and pretend we don’t exist. Or to financially, mentally, and physically abuse us. Or to gaslight us.

We are human beings…..and we deserve to be loved, accepted and included and to be a a part of our communities.

Please read my words and take this to heart. I honestly don’t know the course my health is going to take……all i know is that i feel as though if
i had my family
if had a group of local friends who would come visit me
take me places….to the ocean, to the nearby cool towns we have around here…..and even to any evening services at a cool laid back church where i would be truly accepted…….i may stop feeling so tired and like i’m going to die.
Please know
I say these words as truth!!
When people are alone and lonely
they lose hope……and the ability to dream and to go on.
Please don’t ignore us. Let us be who we are, and just be our friends.
And don’t give up on us.

My November Appeal

I didn’t get up until after 5 PM this late afternoon. I managed to sleep ALL day long today. I got to see the rain start, but i slept through all of this morning’s rainstorm. And then through all of this afternoon’s clearing.
Because…..i have no one to visit me on Sundays, and no one to come and take me places so i can get out of this house.
Connie wants very much to be able to take me places, and she would, but her car needs some repairs, and she is unable to get those repairs done now.
In the meantime, i do have a few local people on my friends list who i know read these posts who could find at least a couple of hours a month to come visit me, and maybe take me to the movies at the mall. Or once in awhile take me to see the nearby ocean.
I am getting lonelier and lonelier, and cut off from the outside world, and yes, being lonely and cut off from the outside world does affect a person’s physical health.
It shortens our lives.
If only i could even make some friends from the LA area, friends who are Autistic friendly, who would be willing to come once in awhile, like Penny used to do from Bakersfield, until my ex-high school friend/ex-caregiver, S., caused HER to turn against me.
When i had Penny, i did get to go up to San Simeon, Cambria, and Morro Bay. Then Pismo, Avila, and the Avila Pier just before the Pierside Cafe closed.
I don’t know how much longer i can go on like this.
My own brother who still lives here won’t have anything to do with me either.
The good news though?
Is that this year, Connie is bringing me a full Thanksgiving dinner of dark meat turkey, ham, stuffing, mashed potatoes and gravy, rolls, string bean casserole, and dessert…..which includes pumpkin pie. 🙂
I am looking forward to that with all of my being!! 🙂
I just wish i had a group of local friends who would come by, bring me a chocolate mocha from Starbucks, and visit, or take me up to the coast for a day out.
I don’t understand why this town is so against me.
I am not a monster.
I am not a bad person.
I am Autistic,
and i am hurting from deep down inside because most people blatantly ignore me.

I Am Scared

I am scared this morning.
I want to move forward
and keep on telling my story.
This is a blog i got invited to
and i thank that person for inviting me here
but today i am now afraid
the other person might delete me
So if i am gone
All of the words i have worked so hard to express
will be gone too.
I don’t want that to happen, please.
Please don’t delete my words.
No matter what has happened, i still
need for people to hear what it’s been like for me
growing up from the ’60’s till today
as an Autistic person
Please have mercy on me and let me let my words stay
and let me keep my blog.
Thank you.

Guest Post: An Autistic Speaks About Food

Trigger warning for use of the “r” word, ableism, other disability slurs, ABA, compliance therapies, verbal and physical abuse, gaslighting.

Autistic Academic

(Note: I’m down with copious migraines, so expect my #AutisticsSpeakingDay contribution to be late.  Meanwhile, here is a guest post also suitable for the occasion.)

An Autistic Speaks About Food

by Marie King

“That’s BS. My mom made me eat things I hated, only to find out as an adult that those things were good for me!” Oh, gods. The internalized ableism.

The comment was part of a recent Facebook thread that linked to this post. (Scroll down to “Emotional Aftereffects Cannot be Separated From The Intervention.”)

ABA orthodoxy stresses that food-averse people with Autism MUST EAT IT, even at the expense of choking, gagging, crying, kicking and fighting. As an Autistic person who lived that experience every day, I’m here to say “fuck off.”

That 70s Kid

I grew up in the 70s before Autism was fully recognized as a spectrum condition, or fully recognized at all.  All…

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Autistics Speaking Day 2015: Our Autistic Future

Sometimes a Lion

Last week, I had the honor of delivering remarks at the 10th anniversary celebration of the Autistics Association of Greater Washington, one of the largest independent Autistic-run social groups in the United States. For my 2015 Autistics Speaking Day blog post, I’ve decided to share those remarks:
Autistics Association of Greater WashingtonThank you so much for having me, and I have to say that it’s an honor and a privilege to speak to AAGW. I am profoundly grateful to Mark and Chuck and the other founders, leaders and members of AAGW for pulling this group together and making it a reality. This being your 10th anniversary, it’s important for us to take a moment and realize that the Autistic community has grown a lot over the last 10 years and Autistic people in all of our diversity are a lot more visible. A decade ago, it was a really scary and unprecedented thing to try…

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