Monthly Archives: September 2015

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.

autcom emailExactly 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!!

Musings Of A Wandering Autistic

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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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:

photo

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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