Month: March 2018

When You’re Afraid of Autism Awareness Month

Content note: this post may be upsetting for some, especially for my fellow autistics who also are anxious about April. 

And of course, April is ‘Autism Awareness Month.’
I’m already cringing inside. The urge to burrow underneath my weighted blanket until May is honestly very tempting.

You might’ve gathered it from my last post, but I suppose my fear deserves its own post.

April is a very anxiety-inducing month for us, and quite justifiably so.
Aside from the frustrating puzzle pieces and blue light bulbs, April consists of a lot more issues. From the crusades for a cure to the narrative that we’re a burden, it’s a hard month for us. Ironically, when we speak up during April, we are told to shut up or that our feelings don’t matter.

I’ve found that the hardest aspect of it for me personally is the constant reminder that autistic people are seen as burdens. From parent memoirs to Twitter tantrums telling everyone how hard it is, it’s actually really depressing.

Take for example a video I saw a while back, saying how they realized the last time that their child was ever going to be “okay.” It broke my heart.

There is no ‘last time’ your kid is going to be okay. Your kid, simply put, is going to be okay – if you give them that unconditional love, acceptance, and support. Autism hasn’t stolen your child. Your child is a unique individual who is deeply loved and wanted.

This video continues to contribute to the thinking that we are burdens, tragedies, a fate worse than death. And once again, that belief is why we have a Disability Day of Mourning for victims of filicide.

I’m beyond done with this narrative that we are so difficult to deal with, or that our parents don’t want us or they even want to kill us. I’m done with people telling me I’m overreacting or too emotional (the humor being that these are the same people that tell me autistics have no emotions).

Personally?

How do you think these videos make me feel, when the mother talks about her kid being a burden?

I grew up as a child waiting and literally hoping for my death, because I knew I was different and it was my fault that no one wanted me. I was convinced that I was too much to deal with and that I was a burden. I was in therapy by the time I was around 5 years old – because younger me was depressed. A five year old should not be suicidal, and I was too afraid to tell anyone that I was.

I spent my entire life thinking that I was a burden to everyone around me because of me being different, and that everyone would be better off if I was dead. I remember being seven years old and contemplating the best way to accomplish it – in ways that I wouldn’t dare to recount on this blog.

And you know what?

I’m not going to sit here at the age of 21 and listen to someone imply that I was a burden. I can’t spend all month listening to people constantly talk about us in a way that brings me right back to elementary, middle, and even high school itself.

And if I internalized this stuff (even before my diagnosis), I know there are children out there who have internalized it, too.

Thankfully, I’m not that severely depressed and scared 5 year old little girl anymore.
I am an autistic disabled woman who will be a force to be reckoned with, and I will FIGHT to protect disabled kids from being told it’s their fault and that they’re just a burden. I will do everything in my power to protect other autistic children from harm.

Our kids are internalizing this. This autism awareness needs to shift away from the negativity and fear.

We don’t need simply just awareness anymore.
We need kindness, and understanding. We need accessibility and accommodation.

Most of all, we need acceptance – that we’re not broken, weird, and unworthy to be loved.

Right now, the only message that we hear throughout all of April and its blue lights is that our existence is tragic – and that being alive is a burden to everyone around us.  So many times I have told other autistic kids I was on the spectrum, just to hear them gasp in surprise – because they said they didn’t think autistics were able to do “cool things” like own a pet or have a boyfriend. They’ve been taught for so long that they are inferior, when they have so many strengths.

And that’s why I choose Autism Acceptance Month instead. My fear of April is nowhere near as strong as my fear of other autistics feeling inadequate and unloved.

Our kids deserve better.

Our teens deserve better.

Our adults deserve better.

All of us autistics deserve better.

 

 

Autism Speaks: We’re not listening to you.

I imagined I’d make an eventual post on my disdain for Autism Speaks eventually.
While all the chants of “Light it up blue” and puzzle pieces surround us as April approaches, I’m already covering my ears.

Surely by now, people are aware of the horrid things Autism Speaks is responsible for. Right?
…apparently not.

If I see another blue puzzle piece, I will scream.

People have made cases against Autism Speaks over and over and over again. It’s fairly well-known that they’re a terrible “charity” at this point. Even a lot of the families that I have worked with locally have expressed how much they detest the organization – especially regarding a lack of supports and how the organization has added to stigma.

Whether it’s because of their poor charity rating, or their support of the Judge Rotenberg Center (a place that literally tortures autistics and has been denounced by the United Nations), their horrifically terrible financial nonsense, or even their direct obvious hatred of autism and autistic people – they’re overall just a terrible organization. (For the record, I’ll put up a page that has all these resources listed at some point).

This organization is one of the reasons I never got diagnosed as a kid – because “autism only affects young boys. This website says so.”

This organization is one of the reasons people think we are tragedies and burdens. The fear and stigma they push is one of the reasons people tell me I should never reproduce or that I shouldn’t even exist. They pushed out the false narrative that we are a fate worse than death. They say we ruin lives, marriages, family outings.

This organization is one of the reasons why the world wants to cure us – to find a prenatal test to literally stop future autistic people from existing.

This organization is one of the leading organizations in the US, yet there’s so little input from actual Autistic people. It’s run by CEOs and business leaders more than anything else.

A lot of us even consider Autism Speaks to be a hate group.

Autism Speaks doesn’t speak for me. It doesn’t speak for my fiance, my brothers, or my friends.

We can speak for ourselves, if you would just listen.
We are begging for people to hear us, listen to our stories as autistic people. Whether through voice, text, signing, or augmentative communication – we are speaking.

So, no – I will not be lighting it up blue. I won’t wear a hint of blue, and they won’t receive a cent from me.

I will go Red Instead.

I’ll ‘Tone It Down’ Taupe.

I’ll do anything except light it up blue this April.

#StopTheShock

As I type this, there is a large gathering of people assembled outside in D.C.

You may have not heard, but the disability rights’ organization ADAPT has been fighting relentlessly for the FDA to ban the torture on people with disabilities.

The Judge Rotenberg Center, in the middle of it all, is notorious for its usage of electric shocks on autistics. They claim it’s for “behavior modification,” a blanket statement that lets them abuse people as they please. The regulations against them were written two YEARS ago.

The UN declared it to be torture. 

The FDA has already proposed to ban it.

Those who have been subjected to the torture have described it as “being underground in hell” and a punishment “for being disabled.”

Autistic activists have fought against it. 

They have cataloged and put together information.

Most of all, they speak up.

The victims speak out.

And yet, the regulations haven’t been passed.

FDA Director Scott Gottlieb will most likely never read this.

But if he did, I have this to say:

Listen.

There are autistic people and people with disabilities being literally tortured. These aren’t just little shocks of punishments (which is still wrong) – this is torturing disabled people simply because it can be done. They can’t stand up, leave a coat on, or exercise autonomy without the fear of the shocks. Not only this, but the victims are in so much pain from the inflicted abuse. This isn’t just about politics; this is a human rights violation.

You have the ability to stop this. You can end the pain, protect others from violence,  and prevent the torture of future victims.

Dr. Gottlieb, you have a moral obligation as a M.D. to protect patients and their well-being. Release the regs, ban the devices, and stop the shock.


 

If you want to learn more about ADAPT’s efforts to fight against this violence, you can go to their website here: http://adapt.org/JRC

Likewise, if you want to donate to help support the protesters, you can help here: https://www.gofundme.com/stoptheshock

Conferences, Midterms, and Naps

It’s official: I made it through half a semester!

Luckily for me, that means it’s officially Spring Break. Not that I’m actually on a break; I have things to do. I’m hoping that I can take the week to plan things and such. Our Neurodiversity Club is doing things for Autism Acceptance Month, I’m still ironing out the details with one of the departments for our film screening of Deej at some point, and I’m trying to come up with events for the community center. I’ve gotten in touch with the local law enforcement and emergency services to come in and meet our kids and teens, let them see the trucks and the K-9 dogs, and let them get familiar with each other. That should be taking place in April, if all goes to plan. Luckily, our local department does autism and disability training with all the officers, so I’m thinking it will go okay.

Our Disability Day of Mourning event went somewhat okay. We didn’t have as big of a turnout as hoped; still, we played a slideshow of the victims and read out the names – the most important part of the vigil.

DDoM Paper Chain
A colorful paper chain lying on top of a brown table. Each individual link has a name of a filicide victim written.

Some of our friends also spoke and shared some readings from I Am Not A Burden by Tuttle, ‘Remember‘ by Amy Sequenzia, and ‘On Our Backs We Will Carry Them by Ari Ne’eman.
On a brighter note, it’s been confirmed that I’m officially scheduled to speak at two conferences this year!
I’ll be doing a session at the local Autism Society’s conference later next month, and another at the Southeast Adult Autism Symposium in July. The first will be over tips for handling meltdowns and making transitions easier, and the other will be on executive functioning and independent living. (I’m already working on the PowerPoint for the second one.)

I’ll try to write more as things come up. One of my goals is to write more, so we shall see.