autcom: how NOT to do it

love explosions

Please read Kassiane’s full account of the unfortunate events which occurred at the Autcom conference in Manchester, NH.

My very dear friend Kassiane, like my daughter Evie and best friend Sharon daVanport, have photosensitive epilepsy.  Being a photosensitive epileptic means that flashing and/or strobing can trigger a seizure.  Seizures can and do kill people.

Prior to attending the Autcom conference, Kassiane expressed concern that Autcom had not done its due diligence in safeguarding Kassiane and other photosensitive epileptics from the potentially life threatening effects of these very real seizure triggers–although they’d quite literally had years to do so following a past Autcom event where Kassiane was subjected to a board member willfully following her around using flash photography.  I exchanged several emails with Autcom board members in effort to assure no more malfeasance.

Exactly zero of these precautions were executed.  This resulted in one of the attendants not being aware…

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Autcom 25: Human Rights for All?

I find it an utter shame that a conference which is supposed to be a safe space for Autistics, was not, because of board members who chose to play difficult, selfish, mean and downright cruel.

Flash photography can kill those who have certain types of epilepsy. Apparently, certain board members did not care.

This blog needs to be shared all over. Because, and i speak on behalf of myself and all of my Autistic Community friends, the abuse and gaslighting of Autistics needs to stop now!!

A Hell On Earth

At roughly 7:00 AM yesterday, I was standing in an upper floor hallway of the Radisson Hotel in Manchester, New Hampshire with Autcom President Emily Titon and my new friend Ivan.  We were at the Autism National Committee’s 25th Anniversary Conference, and Emily and Ivan were trying to get in touch with the other board members while I tagged along.  The previous day, one of the attendees had used a flash camera in the presence of well-known Autistic activist Kassiane Sibley (who writes the blog Radical Neurodivergence Speaking – you should read it).  Like 30% of the Autistic population, Kassiane is also epileptic, and for this reason, flash photography was to be strictly prohibited at the event. This was the first point on the rule sheet, and was also brought up during the opening remarks.  Apparently the person who used a flash had not been able to attend the opening…

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Disability Rights on Trial: What’s Really At Stake in the Stubblefield Case?

What Keeps Me Going

The fact that i can come to my computer anytime of the day and night, and i have supportive friends.

The fact that i have a TV to watch, and can also watch anything i want to watch via YouTube too, online.

The fact that i, as an Autistic adult, now have a real forum to tell my story and post blogs and vlogs.

The weather cooling down yesterday.

My caregiver and friend, Connie.

Facebook and all of you.

My mom and my two nice sisters.

The understanding i have garnered of Autism and Autistic Acceptance through Facebook and the internet.

Again, all of my awesome Autistic/Disabled Community friends.

The fact that it is now officially Autumn.

Getting to go someplace scenic once in awhile.

My Slurpees.

The beautiful sunrises and sunsets when they happen.

beautiful and unique clouds.

Beautiful scenery….especially seeing pictures of Michigan, The Great Lakes,

New England, New York, NYC, Canada, the Aurora Borealis, the Midnight Sun.

and the Fall Foliage.

Having the hope that i will win the lottery so that i can

finally move away from the mean bullies and their loud bass and hot rod noises,

and get my leg surgery done, so i can have my left leg back.

Hope…always that light of hope that someday it all will get better.

To all of you who suffer because you can’t get out and do

the things you want…..please know, you are not alone.

But as long as we have hope and each other, and people who believe in us

it will always get better.

So keep hoping and dreaming and believing…..and know…..

you are not alone, because we have each other.

And miracles can and do happen.

I believe in a Higher Power and in rainbows and unicorns too.

I would love to wake up one day to see a tye-dyed sky outside.

I do believe that too, can happen.

But in the here and now, the cool thing is that we all have each other.

And that is what gets me through each day.

I love you, everyone.

Thank you all for being in my life.

No, Donald Trump, You Are Wrong!!

The following is a transcript of the part of tonight’s debate, now that i have had a nap, and some of my spoons are back, in which Donald Trump, and other Republicans are continuing to blame Autism on vaccines.

This….needs to stop. It is this kind of talk and attitude which keeps us in a place of continuing to be misunderstood, misinterpreted, unheard, not listened to, muzzled, silenced, abused, discredited, stigmatized, Othered, thrown away, ignored, mocked, laughed at, exploited, denied quality medical care, denied quality services and supports. The way Trump, Paul, and others talked about us, was like we are all wrong and damaged goods.

Just no.

Autism has always been around. Autistic people have always been around.

I thank God for the internet and social media, because the internet and social media has given us our voice and platform to effectively get our stories out there. That, and better diagnostics are why we are more visible. And we are not tragedies and burdens. And we are not an epidemic.

We are human beings in need of being heard, listened to, and accepted, and included.

I have made this post, and transcript into a blog for my Facebook, WordPress, and Blogger blogs. Here is the transcript:

” Carson: There have been numerous studies and they have not demonstrated there’s any corelation between vaccinations and autism. This was something that was spread widely 15 or 20 years ago and it has not been adequately revealed to the public what is going on. Vaccines are very important – certain ones, the ones that would prevent death or crippling. There are others – there are multitudes of vaccines which probably do not fit into that category and there should be some discretion in those cases.

Trump: Autism has become an epidemic. 25 years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control. I am totally in favor of vaccines. But I want smaller doses over a longer period of time. … I am in favor of vaccines. Do them over a longer period of time. Same amount but just in little sections. And I think you are going to see a big impact on autism.

Carson: The fact of the matter is we have extremely well-documented proof that there is no autism associated with vaccinations. But it is true that we are probably be giving way too many in too short a period of time. And a lot of pediatricians now recognize that and are cutting down on the number and the proximity in which those are done and I think that’s appropriate.

Trump: That’s all I’m saying.

Paul: One of the greatest medical discoveries of all times were the vaccines particularly for smallpox … I’m all for vaccines, but I’m also for freedom. I’m also a little concerned about how they are bunched up. My kids had all of their vaccines and even if the science doesn’t say bunching them up is a problem, I ought to have the right to spread my vaccines out at the very least.

Huckabee: We need to remember that there are maybe some controversies about autism but there is no controversy about the things that are really driving the medical costs in this county. And I would really believe that the next president ought to declare a war on cancer, heart disease, diabetes, and Alzheimer’s, because those are the four things that are causing the greatest level of cost. … I grew up in the 50’s. I remember the polio vaccine. We saved billions of dollars since that time because we haven’t had to treat for polio. Why doesn’t this country focus on cures rather than treatment? Why don’t we put a definitive focus scientifically on finding the cure for cancer, for heart disease, for diabetes, and for alzheimer’s, a disease alone that will costs us 1.1 trillion by the year by 2050. ”

They would all do well to read Steve Silberman’s book “Neurotribes”.

My Latest Medical Nightmare

The following is what happened to me yesterday, and is another perfect example of how not to treat an Autistic person. Ever. Ever. Ever.

Because we process, smell, experience, feel, touch, taste, see, and hear everything differently than you do. Because when you fail to respect and listen, it will cause us to meltdown and shut down and not be able to talk or deal with you.

In my case, today, i almost lost vital services that i need because of the physical therapist they sent to me. Because he was harsh, blunt, and unfriendly. And he would not listen to me.

Here is my earlier post from yesterday. And why i am now scared to be alone when dealing anymore without my caregiver or someone who understand and can come in and advocate when i lose my words.

Yesterday i not only lost my words….i did have a bad meltdown because of how the physical therapist treated me.

My post:

“Later on i will have a story to tell about just how insensitive medical staff can still be towards Autistic people.

I had my visit from the physical therapist today. Thankfully, Connie was sitting right here across from he and i, and witnessed the whole encounter between he and i. To make a long story short, he was brusque, unfriendly, and unwilling to really listen to me. In fact, he was unfriendly towards me right off the bat, putting his bag down right by my TV outlets, which set me off, because i do not like for anything to be placed up against my electrical outlets. So, i asked that he move them. Then he took it upon himself to sit down in my computer chair without first asking me.

He and Connie then left the room to go look at the heavy wheelchair i was given, and then my hospital bed.

Then when Connie and i proceeded to explain my needs for a Hoveround, and a new hospital bed that i can get in and out of easily, he interrupted, started to tell me he was going to have to get in touch with the place where i got my current hospital bed, which triggered me because that place was very unpleasant for me to deal with when i had to deal with them in July of 2012—-they were the ones who sold me a defective lift chair, and then came with a huge thick rock hard mattress for my hospital bed, which made it impossible for me to get in and out of that bed or to sleep in that bed, so i jumped into say i can’t deal with that place again because of how they were rude to me. Because he—the physical therapist who came yesterday, failed to communicate clearly to me and make it plain at the time that he was only going to be calling them to find out why i didn’t get a better mattress, so he could proceed from there. Had he of let me talk, and explain all of this, then after i talked, he would have explained that he was only going to be calling them to see what went on, so he could know how to proceed in how to help me—— i would have been okay——SO okay. But no. Instead, he began the now all too familiar and painful “Shutting-Of-The-Door-On-Melissa” routine.

His response was to tell me that if he couldn’t work with Best Care, there was nothing more he could do for me. I was already tense due to his unfriendliness, and when he closed the final door on me, i lost it and had a bad meltdown—–because——more ppl being dismissive and shutting the door on me for the help i need——is a huge NO. This is the same reason why i haven’t yet been able to get the leg surgery i am needing so i can walk again and drive a car again. Because of assdouche douchecanoe dickwads like him.

Because the cancer specialist i saw also disliked me and treated me brusquely.

I told Connie i was going to post about this, and she is okay with me doing so—–because this experience illustrates how we Autistics are still dismissed and muzzled and not allowed to be heard and listened to.

Shielding my face from his, because he had upset me so much that i didn’t want to look at him or feel his presence in my house anymore, i turned to Connie and asked for her to talk to him…and he continued to keep saying he can’t do anything….and so i began room spinning around me, more red-faced, more shaky and louder, hand-flapping, saying “No, no, no”, over and over, and so he left, and she followed him outside and talked to him there.

She said he made the comment:

“This is NOT Autism”,—-implying the this was something else—-but not Autism——

and she said “Oh really? What makes you so sure about that? Are you an MD? No. You are a Physical Therapist. And you are wrong.” She proceeded to explain she has worked for me a long time….that yes, i AM Autistic, and he is NOT qualified to make that diagnosis after only meeting me for five minutes.

Feeling remorse, he attempted to come back into apologize, but i was still in the thick of my meltdown, still very upset and angry—— so i said no, no, no, and “Furthermore, i do not want him to come back to my house—-ever!!”

When my nurse came, we told her what happened, and she is making a full report and getting me assigned to a female physical therapist who she is certain i will like.

I will be making this into a blog later on.

And i have. Please like and reblog and share this.

Starbucks in my community? Let’s show them why we #BoycottAutismSpeaks

Starbucks wants to hear from the Autistic community.

#BoycottAutismSpeaks

There Once Was a Boy Named Lucas Alexander

On Labor Day I took my son to Starbucks for a little mother-son date. While we were there, we noticed this flyer advertising upcoming events supported by a program called Starbucks in the Community:

Notice especially the Autism Speaks event in the middle, one of the ubiquitous walks A$ holds around the country. Given that I support the #BoycottAutismSpeaks movement, I inquired at the counter about who I could talk to about removing support from this A$ event. I was given a business card, and wrote the following letter the next day. (I’m sharing the letter in full both so I don’t have to resort to awkward “and then I said” reportage, and also in case anyone wants to borrow the wording or the rhetoric in future letters to Starbucks. I hereby give blanket permission for you to share and use this.)

***

“Dear Ms. [name redacted],

“Yesterday I took…

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When I Say No, I Mean No!!

Early this morning my doorbell rang as i was organizing drawers in my bedroom. It was a caregiver who i had for three times off and on from late May 2013 to Feb. 28, 2014, a lady in her forties named JuJu….not her real name. During her times with me, she would talk down to me at times, insult me, slap my lotions and creams on me, tell me no, she was not going to do what i was asking her to do, and she would make me wait on my needs. In addition, she made me have to cancel several of my doctor’s appointments. The biggest thing though, was that she was always, always asking me to give her gas money for her car…..to the tune of $25 to $35 to sometimes $45 per week….i could ill afford to be giving her this money, and would try my best to tell her i can afford maybe $10-15 a week…..but she said no….. we would have to limit things if it was any lower than what she was demanding i give her. I was always broke because of her, and had to resort to paying only minimum payments on my credit cards, because she took so much money from me. I even had to go to the bank and get three cash advances off of those cards so i could afford to pay her for her car expenses she said she had because of my errands.

JuJu was one of a long string of very abusive caregivers that i had from March 2012 until i fired JuJu on February 28, 2014, and finally found Connie in March of 2014. Things got so bad while JuJu was my caregiver, that i was actually making serious plans to move to Michigan. But then shortly after i fired JuJu, and got Connie as my caregiver, the lady who i was going to live with in MI, suddenly turned mean….so my plans for a new start in MI were off.

I then had to suffer through two more bad caregivers when Connie and i took a one month break earlier this summer.

My wall post from Facebook tells the story of what happened this morning. I wrote it well after JuJu’s visit, after i had gotten done watching YouTube videos, which i watched to help get me to calm down.

“~~~I just got done watching YouTube. That has helped to calm me down some.
But yes, i am still very scared. M, the first temporary caregiver who i had when Connie was gone for that one month, and JuJu, KNOW one another. M also knows JuJu’s Apostolic Christian sister too. They are all friends with each other. How i know this? Because when M was working for me, she asked me about JuJu and Jess, and told me right out that they were all friends.

And now? Tonight? JuJu pulled up her big black pickup truck right into my driveway at 1:45 AM this morning, and rang my doorbell, because she wanted to come to visit me and see how i was doing. She looked disheveled, and was wearing dark pants and a thick black coat with gold buttons down the front. Yes, even though we are in the middle of a heatwave, and the outside temp was still 67 degrees at that hour of the morning, that was what she was wearing.
I opened my door, and she asked if i remembered her?
I said “Yes, what the f**k?” and then
“What the f**k are you doing here?”
She said “I just came to visit you and see how you are doing. I knew you would be up, so i thought it’d be okay to stop by.”
I was like “Ummmm, at THIS hour of the morning?”
She got nervous and said “Uhhh, maybe i should just go, maybe this wasn’t such a good idea.”
“No, it wasn’t,” i replied, “I meant it when i said i never want to see you again. You were mean to me.”
She was like “Okay, if you want to be that way,” and then kept yelling at me in a snotty tone of voice as she went back to her truck.
I told her that she needed to leave now, or i would be calling the police.
She did start her engine and leave.
I called the police anyway, and told the dispatcher everything about JuJu.
A nice officer came, and i told him everything. He said he is on all night tonight, and that he would patrol my street all night long.
Today is one day when i can hardly wait to see daybreak.
Yes, i am still scared shitless!!!~~~”

When i say no, i mean no!!! 

When i say i no longer want to see you, i mean that.

When i say i cannot afford something, i mean it.

When i say i don’t want to be talked down to, gaslighted, demeaned, treated as “less-than”—i mean that too!!

To JuJu…..M…..A…..CeCe…..KT…..Sh***y…..Jess……Little Jess……i am still processing through all of the emotional and mental hell you all put me through. Please don’t get angry because i need to write, vlog, and blog about it. I am writing about this not to slam and badmouth anyone, but because this is part of my story. And it is an important part of my story.

Because you all abused me physically, mentally, emotionally, and financially. You all abused me by also gaslighting me.

But above all……please…..do not call me, email me, seek me out, or come to my house anymore……when i say no, i mean no…..i never want to see or hear from any of you ever again…..because none of you understood me, none of you respected me, none of you realized that i am not a monster, that i am not a behavior problem……

NONE OF YOU REALIZED THAT I AM AUTISTIC!!!! AUTISM is a neurological developmental disability. No One can fix, cure or make me non-Autistic. This is who i am, and who i will be till the day i die. This doesn’t give you a pass to hurt, exploit, abuse, and discriminate against me in any way.

I will say it again…..DO NOT CALL ME, VISIT ME, EMAIL ME, OR CONTACT ME IN ANY WAY, SHAPE OR FORM. When i say no, i mean no.

Or i will be forced to take legal action. And i will.

Where I Am At Now…..I Badly Need To Move…..Please!!

This blog post is derived from a collection of wall posts that i wrote from six hours ago till now.

Warning, strong language, profanity. Because that is where i am at as of now, tonight, as i write this.

(6 Hours Ago)

“My whole spoon supply has been sucked completely dry again by the damn evil car club east of me, and their constant parading, literally parading back and forth past my house with their fucking loud thundering bass up as loud as it will GO, all just to hear me scream and yell in sheer pain and agony inside of my own house!!!

Now i am PISSED OFF….and it is going to take me a LONG time to calm down.

Connie is fixing me homemade cheeseburgers for my dinner tonight. And getting me more chocolate ice cream too.

After we eat, i will have my shower.

And now. Someone has just driven by and cat-called/banshee yelled at me now. Just what the everloving fuck???!!!!! Why can’t everybody in this damn hateful neighborhood just leave me alone???!!!!!

Now i am fucking DONE for the night…..NO spoons…..NONE now!!!!!! I am in shut down mode, and when Connie leaves, i am holing up in my house with all of the doors and windows shut, and my TV and music up till at least after 2 AM tomorrow morning. I will come out again after that to watch and enjoy my TV shows and YouTube watching, and more Facebook. Because at that time, the bullies aren’t here.

But no….i am anything but calm right now. I am flaming pissed off right now!!!!!!”

I don’t feel safe in my own home. For the past 23 years, this has been a prison and a torture chamber for me, because of the mean bullies in this neighborhood who have taunted me for all these years.

Why haven’t i moved? It has always been because of money, and the choices i have always been limited to because of my housing assistance program. And because my mom is my landlord here, and i know she will never rmake me leave because of the meltdowns i have almost everyday sometimes, due to what still happens outside of my house, to me, via those who still to this day, bully me.

They bully me because they don’t understand that i am not a bad person or a monster. They don’t understand that i am a good person. That i am Disabled. That i am Autistic. That certain noises are real painful triggers to me, and therefore, set me off into sometimes severe meltdowns. Meltdowns that cause me physical pain and the further and further physical breakdown of my over all health.

(4 Hours Ago)

“I am putting myself in hibernation until after 2 AM with the sound on my TV and computer speakers (iTunes) both turned up loud to cover any noises i should hear that should be bothersome to me outside. I will come out of hibernation when i feel it is safe for me to be able to enjoy my TV, YouTube, Facebook, and just being in my own home. When i know the bullies are all gone. I so hope i win tomorrow night’s Powerball jackpot….then i will finally be able to move from this awful nightmare!!!”

I dream fervently so of the day i will finally be able to move from this loud, hostile tin canyon street, to a neighborhood that is warm, friendly and welcoming to me. Where my neighbors will understand and take me under their wing, and take me places, and do things with me. A neighborhood where i will be able to look outside of my windows and see beautiful trees, green grass, and lots and lots of beautiful different-colored flowers. Where my house will have enough room for me, and my mobility equipment that i am needing so i can get around better.

Yes, i now have a cane and a walker, and a wheelchair, but the wheelchair is SO very heavy, and hard to maneuver. They gave me the wrong one. So i rarely use it.

A neighborhood where i can get out and roll down its sidewalks. Without the fear of being yelled at, called names, and bullied by the mean men in the warehouse, the auto shop, and the car club.

(36 Minutes Ago)

“Now i need to move more than ever. My next door neighbor informed me last night that she has now made friends with everyone on this street, yes, everyone, including all who bully me…..and she was very quick to tell me how they all tell her that i have a “history” here.

I find it suspicious that Dillon from down the street who i worked so hard to make friends with, who did used to be so nice to me for the longest time, now won’t speak to me again.

Yes, i have been having alot of problems with my next door neighbors lately. No, they don’t seem to like me either.

It’s my fault. As always.

The problems i had yesterday with the cat-calling, banshee-yelling, and subwoofers, had nothing to do with them.

Maybe not the subwoofers, but the guy who came by and banshee yelled, yes, that was towards me.

I so fucking want out of this cage where everyone hates me because they, none of them understand, that i am a good person who happens to be Autistic, with sensory issues to certain kinds of loud noises, and that i am NOT the way i am because i’m a monster.

I am so sick of everyone thinking of me as a monster. I so want to just run away from this hell-hole and go live where i will have neighbors who will actually see who i am and like me.”

I am an Autistic adult who is trying my best to live independently, and i can continue to do so if i have the right help and support system. I do have Connie. But i need help so that i can financially afford to finally move out of here.

For the sake of my mental, emotional, and physical health. Please.

(Blog written at 12:57 AM, Saturday, September 5, 2015)