The Hypocrisy of Autism Speaks; A Searing Message to Donald Trump

Just as the Catholic Church is hypocritical about sex (particularly premarital sex), Autism Speaks seems to have turned into a hypocrite earlier this week during their annual Light It Up Blue campaign. I saw a couple of my relatives on Facebook plaster their profile pictures with a Autism Speaks filter that read, “Light It Up Blue for Love and Acceptance.” I was very skeptical about the organization’s change to their mission statement months ago, and the fact that members of my extended family chose to paint their Facebook profile pictures blue for the sake of autism awareness compounded my skepticism even further. “Autism Speaks seems to have changed their tone about autistic people, yet they’re still calling Code Blue on us. I don’t understand it,” I tweeted the morning of World Autism Awareness Day, which I call World Autism ACCEPTANCE Day. @LetsStimTonight, one of my followers, concurred with me as she replied, “I can’t trust their change of tone. If they took a moment to acknowledge the harm that they did, that they *were* in the wrong, and that those views no longer reflect their message, then maybe. Until then, I see them as the same ableist people with a more appealing mask.” This begs the question: What’s the point of a so-called “charity” like Autism Speaks vowing to do right by the group of people they claim to support only to turn back around and continue to demonize us for profit? It’s like a borderline obese man promising his wife to change his diet and hit the gym, slim down, and then two months later decides to eat a donut, a bag of Cheetos, and a hot dog, thereby reverting back to his unhealthy habits and pissing off his wife to the point where she files for divorce.

To compound matters further, Donald Trump (I REFUSE to call him President) published a proclamation on the White House website two days before World Autism Awareness Day that celebrates the contributions autistics have made to society and calls for a greater understanding of us, yet encourages further research into treatments and a cure for autism. This statement coming from the guy who has spread countless falsehoods about autism and its causes on Twitter. He even went so far as to say that a child can develop symptoms of autism after undergoing multiple rounds of vaccinations, therefore the government should put the kibosh on the vaccination program, or at the very least, require doctors to administer smaller doses of vaccines to their infant patients. And for the first time ever, Trump lit the White House blue per the suggestion of Autism Speaks co-founders Bob and Suzanne Wright, the latter of whom is deceased.

And now, a heartfelt letter to America’s most controversial president.

Dear Mr. Trump,

My name is Cristina, and I’m a 23-year-old autistic woman currently in her junior year of college. There are multifarious reasons why I refuse to call you President. Your stance on autism tops that laundry list. Before you were elected into office, I was extremely anxious about the laws you would write and pass that would strip every autistic person’s right to live their lives freely and independently without discrimination for their neurology. Judging by the damning tweets you wrote about autism and your Autism Awareness proclamation published on the White House webpage, I was right. You’ve tweeted countless times before your election that rigorous vaccinations have increased autism rates. As the daughter of a pharmacist, I’d like to tell you that is not the case. First off, autism is caused by a genetic mutation, NOT vaccines, especially the MMR vaccine. Anti-vaxxers like yourself believe vaccines cause autism due to the mercury-based preservative thimerosal, even though the compound has been banned from usage since 2001. Second, autism rates have increased not because there are more autistic people than ever before, it is due to advances in diagnostic methods. Whether autism has been diagnosed in early childhood, adolescence, or even adulthood–some people don’t even know they’re autistic until they hit their 40’s–autistic people may be eligible for benefits from Social Security and health insurance. For some autistic people, attaining Social Security benefits can be difficult, even with comorbid disabilities seen or unseen, such as anxiety and depression. Meanwhile, you made a proposal for Congress to slash $15.1 billion from the Department of Health and Human Services, which would make it even more difficult for us to get the funding we need to cover our health expenses. I have three more years under my mother’s health insurance plan, and once I turn 26, I’m going to have a hard time shopping for an affordable insurance plan or even apply for Social Security benefits simply because you think autistic people, with or without comorbid disabilities, aren’t good for it.

It’s one thing for autistic people to experience bullying by their neurotypical peers in public school, but for you, the most powerful man in the country, if not the world, to bully us? By proposing such laws that discriminate against us–dismantling the Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA), and the Affordable Care Act (ACA)–you’re turning the clock back 20 years, taking away all the rights and benefits we have fought so hard to attain. Rolling back protections guaranteed to us by the aforementioned acts can be detrimental to our overall well-being, even fatal. We’ve taken a lot of prejudice in school and at home (in some cases), but we’re not gonna take it from you. If you do anything that threatens our very livelihood, we will fight to have you impeached. That is a promise.

 

Sincerely,

Cristina Alexander

 

Feeling Tongue-Tied

whatruselling

I’ve loved reading books and articles aloud since grade school, where my teachers were impressed by how impeccable my reading and speech patterns were compared to those of my classmates. For the past couple months, however, my reading and speech patterns have been anything but infallible.

It’s one thing for a stroke patient or someone born with a speech impediment to stumble over words or lose their train of thought while reading aloud or engaging in conversation, but I’ve never heard of someone with no speech difficulties at all as a kid suddenly starting to experience them as a young adult–especially someone like me who loves to read and talk about interesting subjects with others. Every time I would read something out loud, I would do so without any issues. My reading pattern was so perfect, I could see myself recording audiobooks! Now, when I read my textbooks for school–even stories for American Lit class!–I find myself either stumbling over my words or saying something completely different. Take this paragraph from James Purdy’s short story “Reaching Rose.”

“Richard was one of the few persons whom Mr. Sendel actually knew any more. Everyone else, somehow, was somebody you talked generalities with, but occasionally he and Richard managed to say some particularity that made up the little there was of meaning.”

Now, take a look at how I read this paragraph.

“Richard was one of the few persons whom Mr. Sendel actually knew any more. Everyone else, somehow, was somebody you talked generalities with, but occasionally he and Richard managed to say some particul- particularity that made up the little there was of meaning.”

Notice that I started reading this paragraph perfectly fine. When I reached the word “particularity,” I unconsciously paused before I could even finish saying the word.

Allow me to move on to a paragraph or two from a 2015 op-ed article from the Sun Sentinel in which the author implores Marco Rubio to resign from the U.S. Senate, since I have to read it for my News and News Reporting class on Tuesday anyhow.

“Rubio has missed more votes than any other senator this year. His seat is regularly empty for floor votes, committee meetings and intelligence briefings. He says he’s MIA from his J-O-B because he finds it frustrating and wants to be president, instead.”

Here’s how I read it.

“Rubio has missed more votes than any other senator this year. His seat is regularly empty for floor votes, committee meetings and intel- intelligence briefings. He says he’s MIA from his G-O-B because he finds it frustrating and wants to be president, instead.”

Again, I paused on the word “intelligence.” And I misspelled “JOB” by replacing “J” with “G,” which was extremely embarrassing because someone who’s so good at spelling even though she never participated in a spelling bee, let alone auditioned for one in 7th Grade, shouldn’t make such a big mistake as misspelling one simple three-letter word.

My anxiety has been somewhat diminished, but the fact I’ve been making speech errors more frequently than I like to seems to be telling me otherwise. It’s making me feel like I should either visit a neurologist to see if my anxiety has caused some damage in the Broca’s area of my brain or undergo speech and language therapy again. But then, my school putting me through speech and language therapy from pre-K to 8th Grade was less about correcting a speech impediment (because I didn’t have one to begin with) and more about improving my social skills.

I believe that this speech problem can be fixed either by myself or with some psychological help, but I’m scared that I’ll talk like Porky Pig for the rest of my life. That wouldn’t sound good for audiobooks, now  would it?

 

Driven to Anxiety

Driven to Anxiety

I thought I would be happy to get back into the groove of academic life after my eight-month break from school, but unfortunately I’ve transferred to Florida Atlantic University in worse emotional shape than when I left Broward College with my AA degree in hand. Why? Although I’ve become more socially engaged, my anxiety has somehow managed to come back to ruin me–not just in mind, but in body and soul as well. For over two months, I’ve had heart palpitations, headaches, upset stomach, muscular spasms, and more recently pins and needles. I can still function just fine, but my body would still be in optimal condition if not for the following issues looming over my head.

  1. My incomplete novel
    • I’m just one hair strand close to done with writing my first novel, but I just needed some inspiration from Law & Order: SVU to finish the last chapter or two. I promised myself I would finish the book by the time I got back to school, but it seems I kind of let myself down. If I had signed my soul over to a publisher, then I would’ve had it finished, edited if need be, and placed it on  the shelves of Barnes & Noble a lot faster.
  2.  Driving
    • On Friday, September 9th, I passed my driving test and acquired my driver’s license. While I am grateful that I worked so hard to get the ultimate ticket to social freedom, I should’ve done this a lot sooner. Right now, I’m driving to and from school with my mom in her mini-van, and so far I’m doing remarkably well. My parents got me a new car on Halloween, but I have to put off driving it by myself for a few days.
  3. The possibility of someone ending my new relationship
    • Kristoff is just the most amazing man to ever come into my life. He’s smart, funny, affectionate–and he was in my church’s youth group back in high school (even though I don’t remember talking to him much). Unfortunately, someone on Facebook wasn’t too happy about the fact that I found love during the summer and he didn’t. That someone was my college acquaintance, who I’ll call Juan. About a week into the Olympics, Juan messaged me on Facebook asking me what I did this past summer. My answer was very simple–“I went to Vegas, went to SuperCon, and I found love.” The last part pissed Juan off to the point where he bitched at me for spending so much of my time with Kristoff and not him, to which I responded, “He’s a good guy! I even practiced some of my driving with him!” (Okay, I probably didn’t type that last sentence, even though it was true. Either way, that conversation has been long since deleted.) Juan got pissed off even more, saying that I sat our friendship on the sidelines as was the case with all of his other friends when they got into relationships. I decided he went too far, so I blocked him immediately. A few weeks later, I talked to Juan over the phone and told him that me having a new boyfriend doesn’t give him the right to yell at me. I assured him that he’ll find somebody to share his life with someday, but he has to do some growing up first. Juan apologized, and I never spoke to him again since. What Kristoff and I have is beautiful, but I’m scared that someone will do something that will bring our relationship to a screeching end.
  4. School
    • Attending university may cost a lot of money–and thank God for financial aid–but it shouldn’t have to cost me my mental health. In Broward College, I was able to focus in class and complete my assignments without any issues. Now at Florida Atlantic University, because I’m now a junior, the workload has become a little unbearable, especially because I’m taking one class that’s not exactly required for my major. On top of that, the majority of the journalism classes I need to take are held at the main campus 45 minutes from home, and my mom isn’t exactly ready for me to attend classes at that campus next semester, which means I will be forced to take two classes next semester and two classes during the summer (if my financial aid will even cover that), or I’ll have to take two online classes (which I don’t want to do, not after what happened with Intro to Ethics). If my brother is able to go to a medical school far from home, why can’t I attend a campus that has all the classes I need for my major? This brings me to my final point.
  5. Double standards
    • This practice is highly prevalent in Hispanic families: sons have more social rights, whereas daughters need to be overprotected regardless of their maturity level. Even though I’m autistic, I’m quite mature for my age, yet my mother insists that I shouldn’t participate in the some of the same activities as my brother based on the simple fact that I’m a girl.
      • My brother can go on trips to Orlando, New York, Vegas, and pretty much all the other 50 states with his friends and his girlfriend; I can only do so with my family.
      • He can work while he’s in school (although he’s unemployed now because most schools forbid Master’s students to hold a job); I cannot.
      • He can go sleep over at his girlfriend’s house if he so chooses; I cannot do the same with my boyfriend, even though his apartment has a guest room available.

These problems have been causing me great anxiety for over two months already, and I’m afraid I won’t relax until I take care of most of these issues. Why anxiety chooses to afflict the smartest people on the planet, especially autistic people, is something I cannot fathom. It’s a bitch, but I have to fight it so I can be fully happy again.

Autism Speaks’s Mission Statement Change

Well, well, well. I never thought I’d be writing about Autism Speaks again at this point. The good news is, they have dropped the word “cure” from their mission statement–something the autistic community has been begging the organization to do since its inception in 2005. Their statement is now written like this:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder, and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
 Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

The bad news: the words “intervention” and “research into causes” remain.

While it’s good that Autism Speaks has somewhat turned over a new leaf to understand us better, it’s 11 years too late. All they did was change their words around, but what about their actions? Are they still going to spread ableist propaganda about us on TV and billboards? Are they still going to exclude us from discussions on how to help us cope with a neurotypical world? Are they still going to encourage our parents to kill us simply because we don’t see things or act the same way that they and other neurotypical family members do? Or are they actually going to buck up and start listening to us, start including our input in their media projects, and start respecting our right to live, work, and play with our neurotypical peers?

Until I see actual changes in their treatment of autistic people like myself, my distrust of Autism Speaks will stay.

 

Letter to Toni Braxton Regarding Diezel’s Autism Status

Letter to Toni Braxton Regarding Diezel’s Autism Status
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Toni Braxton with Diezel at the premiere of “Motown: The Musical.” Courtesy: Essence

Dear Toni Braxton,

Recently, you have announced in an interview with Access Hollywood that your youngest son, Diezel, “is no longer autistic,” giving credit to Suzanne Wright–in light of her death from pancreatic cancer–for his ability to “overcome his diagnosis.” I’m sorry to have to say this as a fan of your music, but…

Wave LMETYWTBS
Wave the Swallow resting on her hoverboard in issue #22 of “Sonic Universe.” The original speech caption, “LOOKS LIKE MY SENSORS WERE RIGHT AFTER ALL!” has been edited to be replaced with, “LET ME EXPLAIN TO YOU WHY THAT IS BULLSHIT.” Courtesy: Archie Comics

To say that your son is “showing no signs of autism” is to say that he has been taught to mask every trait that comprises his neurology in order to pass as a normal, average person. In other words, you and the therapists Wright referred him to have taught him that being autistic is frowned upon by society–and it shouldn’t be. Diezel may be a social butterfly now thanks to the speech and language therapy he received in school, assuming he wasn’t referred to a therapist outside of an academic facility, but that does not stipulate that he’s transformed into a neurotypical person.
Oh, and the “my son Diezel suffered from autism” line? The word “suffered” should only apply to cancer patients, NEVER autistic kids. God only gifted Diezel with the ability to think differently from everyone else.

I know all of this from my experience as an autistic woman–or an Aspie, as I like to address myself. At 18 months old, I was diagnosed with PDD-NOS. Translation: Autistic. Most boys are given a specific autism diagnosis, like Asperger’s syndrome or severe autism. Since I was a girl, the doctors didn’t know which end of the spectrum to place me, so they slapped PDD-NOS on my psychological record. I was enrolled in special education classes and mainstreamed from kindergarten until 3rd Grade, when the powers that be decided that I was intelligent enough to attend regular classes. However, I walked back and forth between my regular class and a special ed class for extra help in math until the 5th Grade. I maintained average to above-average grades, but I was forced to repeat the 3rd Grade based on my low scores on the standardized test formerly known as the Florida Comprehensive Assessment Test (FCAT). I even had to go to a speech and language therapist until the 8th Grade, although I didn’t attend a lot of sessions in 6th Grade. My teachers treated me with the utmost respect, but how my peers treated me was a different matter. While some kids were friendly with me, others just bullied and teased me for exhibiting some of the traits that came with my autistic brain, such as taking their jokes too literal, expressing interest in things that either everyone else has supposedly outgrown by the 5th Grade or earlier is strange to them, and attaining a higher GPA than most students in my class. To put it lightly, I was a glutton for verbal punishment. I even thought of being autistic as a curse because of everything I did–singing and listening to J-Pop songs, whispering to myself (both privately and publicly), expressing my love for the Sonic the Hedgehog video game franchise despite all the production problems some its games endured, and avoiding school dances (even prom, but that’s another story). Eventually, I learned that if other people don’t respect my interests, then that’s their loss.

I may have received help in learning to be sociable, but that doesn’t mean I’m “cured of autism.” Absolutely not. Society shouldn’t expect me to be less autistic, nor should they punish me for living my life differently. Just because I show some of the aforementioned quirks, doesn’t make me a bad person. My family and friends love me unconditionally for who I am. I expect you do the same for Diezel.

And for the love of God, stop supporting and working for Autism Speaks. Suzanne Wright may be gone, but the organization’s mission is still a gargantuan farce.

 

Your fan,

Cristina Alexander

Eulogy for the Ableist

I know all of you religious folk are expecting me to read a verse from the Bible. As much as I would love to read such words of inspiration written by the hands of God, today I would like read a quote from a whole different source and explain why I chose such a quote for your dearly departed Suzanne as theologically as possible.

“Darkness sleeps in every heart, no matter how pure. Given the chance, the smallest drop can spread and swallow the heart.”
Anybody wanna guess where this quote came from? Anyone?
Since no one has the slightest clue who said this, I will tell you that the philosopher who wrote this originated from a work of fiction. Not a novel, but rather a video game produced by none other than Disney and Square Enix, called Kingdom Hearts. One of the main characters, Ansem, is the fictional philosopher in question who wrote the same words I recited to you earlier in one of his reports regarding his studies of the darkness of the heart.

Suzanne Werner-Wright, like most people, was born with a pure heart–a heart that saw no imperfections in anyone, even if they saw themselves or others as imperfect in any way. But as soon as one of her grandchildren became autistic, Wright struggled to prevent darkness from unleashing itself inside her heart. The more imperfections she saw in her grandson, the more darkness had taken hold of her heart and drove her to stomp out people with the neurology under the guise of charity.

Instead of providing us autistic people the supports and accommodations we felt were appropriate, Suzanne did us a grave disservice by stigmatizing our neurology through advertisements claiming that autism is a disease that spreads faster than cancer, diabetes, and AIDS combined; that we contribute to the 50% divorce rate in this country; and that our behaviors, intentional or otherwise, bring shame and embarrassment to our families in public places.

Instead of focusing on the positive aspects of autism–high IQs, intense focus on fields interesting to us (be it STEM, arts and literature, video games, music, or even history), enhanced vocabularies–Suzanne scrutinized the complications autism brings–anxiety, meltdowns, and speech impairments–and referred our families to mental facilities notorious for abusive practices, like applied behavioral analysis (ABA) and electric shock therapy, she believes are designed to eliminate our behaviors and, ultimately, cure autism.

Despite her best intentions, Suzanne NEVER advocated for the acceptance of autistic people. All she’s done in her last 11 years of life was encourage the wider society to tell us over and over again that being autistic is not okay, therefore we should be punished, or even killed if need be.

Eulogy for the Ableist caption
Black and red grunge texture wallpaper bearing the sentence, “Suzanne did us a grave disservice by stigmatizing our neurology through advertisements claiming that autism is a disease that spreads faster than cancer, diabetes, and AIDS combined; that we contribute to the 50% divorce rate in this country; and that our behaviors, intentional or otherwise, bring shame and embarrassment to our families in public places.”

Take a look at me. I’ve been autistic for most of my 22 years on this earth, and I know a lot about the life of an autistic person ten times better than Suzanne has. Did I cause my parents’ divorce when I was almost 2? No. Have I ever embarrassed my family in public in any way? Maybe, but I don’t remember exactly what I did to embarrass them. Does the fact that I received speech and language therapy and acquired social skills from pre-K to 8th Grade mean that I’m no longer autistic? ABSOLUTELY NOT. I only attended one Autism Speaks walk in my sophomore year of high school, and I never went back. Suzanne’s “Call to Action” speech in Washington, D.C. two years later confirmed my decision to not walk for the organization since she deemed us and our families “not living.” Upon hearing this from John Elder Robison, who resigned from the Autism Speaks Board of Science, I plucked the two puzzle piece bracelets I got from the Autism Speaks walk out of my purse and threw them in the trash, ultimately renouncing my support for the organization.

I’m proud to be autistic, and I’m glad that I’ve met people who are on the same boat as me. Together, we are working and/or have worked to defeat every demeaning autism stereotype in Suzanne’s book. She said that we will never attend college and graduate with a degree; we are, and we have–because we have every right to an education. She said we will never leave our parents’ homes and find jobs we’ll be successful in; we are, and we have–because we have every right to live independently. She said we’ll never find love, get married, and raise children (if we so choose); we are, and we have–because we have every right to be in loving relationships.

About Suzanne’s claim that autism is like cancer–the joke’s on her. Darkness had spread everywhere in her body and consumed her before she even had the slightest decency to apologize to all of us for saying such lies about us. I understand that where she will go from here depends on the Lord’s judgment, but because she has promoted ableism against us all these years, I believe she does not deserve to spend eternity in Heaven.

If I ever have children and any of them turn out to be autistic–which is likely due to genetics–I will treat them with bountiful love and respect, and raise them to advocate for their human rights if anyone ever tells them their lives and their contributions to society don’t matter. I will never subject them to any abusive therapies and treatments Suzanne and other so-called “autism warrior parents” swear by to change them. Don’t agree with me? Then I have a special guest here to sing a song dedicated to you and all those who have supported Suzanne’s ableist endeavors.

Ladies and gentlemen, here’s Disturbed performing “Who Taught You How to Hate” from their latest album, Immortalized.

Good night, everybody.

 

GameStop and Autism Speaks: An Unholy Union 2.0

It’s times like this when I wish I didn’t have to go on the Internet on my phone every ten minutes, with or without Wi-Fi, like everybody else.

GameStop has become the second video game company after Activision to form an alliance with Autism Speaks to raise funds for their Light It Up Blue campaign during Autism Awareness Month. At point-of-sale, employees at GameStop and it’s subsidiaries Think Geek, Spring Mobile, Cricket Wireless, and Simply Mac will ask customers if they wish to donate $1 to the organization, most specifically their Family Services iPad Grant program, in which autistic children and adults living in poverty receive iPads. Only 4,000 iPads have been donated throughout the U.S. since 2012. (Really?)

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Courtesy: Gamespot

Upon hearing this news on Twitter yesterday, my anxiety levels shot through the roof. My stomach was in flames, and I felt like my heart and brain were gonna explode on me. I was too pissed off to even write about it.

I’ve been shopping in GameStop for as long as I can remember–playing demos, reading Game Informer, even talking to some employees about the latest games (mostly Sonic the Hedgehog, Kingdom Hearts, and recently Pokémon). Funny enough, I wanted to talk to some of the GameStop employees I know at the mall about this damning partnership, but they were either off or too busy stocking up on the new games that came out this week, so I left them to their devices until next time.

Aside from books, video games have always been a safe haven for me to run away from all the bullying I was subjected to in both elementary and middle school (and at some points in high school). The characters from every game I have played assured me that I can accomplish anything I want regardless of what offensive bullshit other people say to me, even if I take such bullshit to heart. Playing in the worlds of both Sonic and Sora (since Kingdom Hearts II) made me feel loved, accepted, and that I could beat all the odds. GameStop and other retailers, i.e. Walmart, Target and Best Buy, provided all that. Now, to have my favorite video game retailer associate themselves with an organization that dehumanizes the very group of people who call the virtual world a safe haven [without even so much as to conduct research on them and their cruel objective]…

I just want to scream loud enough to rip a hole in the space-time continuum. I’m heartbroken times ten.

Autism Speaks has hit WAAYYY TOO CLOSE to home this time. I won’t have it.