Autism Speaks Doesn’t Speak for Autistics

Autism Speaks DOESN'T Speak for Me via @lizandcode

It’s no secret that autism is a topic I’m passionate about. However, I’m not the greatest when it comes to explaining things delicately, especially if something is common sense to me. Similar to the way I get frustrated and annoyed at people who continue to use words like “your” and “you’re” incorrectly, I don’t have enough patience to try to see the good in feedback pertaining to controversial topics I’m passionate about, especially when the other person cannot, or refuses to, see why what they are saying is actually really insulting.

In other words, whilst we’re always open to uncensored discussions here at Crunchy Family, please acknowledge the politically correct usages as developed by the autistic community is an actual thing instead of sending us angry emails about how we’re “romanticizing” autism (what even is that, anyway?).

Pro-Autism Speaks people say autism is a burden—an abomination. They claim it ruins lives and marriages. Go to an Aspie-central board, and you’ll find hundreds of threads containing complaints from recently-divorced anti-autism NTs (neurotypicals) who were married to autistics and are butt-hurt over the fact that “not much changed” after they married, as well as the fact that their Aspie ex-husband forgot to tell them they loved them a lot, to which one particular autistic replied, “But if we marry you, and we stay married to you, shouldn’t you know we love you? We’ll let you know if it changes…”

Anti-autism allistics (non-autistics) want to strip autistics of their identity by not only finding a cure, but by using a noun as an adjective and attaching “people” to the end—as if people need to be reminded that autistics are people, too—when the noun itself is defined as “an autistic person”, whilst the adjective is defined as “affected by autism”. “Affected” means “influenced in a harmful way; impaired, harmed”.

So… wouldn’t that make anti-autism allistics who have no clue at all what autism actually feels like (because they focus on Autism Speaks’ version, “What Autism Looks Like”) autistics themselves? Just curious—seriously—because, well, I’ll get to this indirectly later on, but for the most part: anti-autism allistics seem to be the most affected by autism, in that they somehow feel as if they truly know and understand what autism itself is like, the direct struggle, and the affects of being autistic… yet, what they view as struggling is not the most struggling part of being an autistic.

Autism is a part of me—it’s who I am.

Autism Speaks is supposedly a charity that helps to spread autism acceptance, but it is because of them that people are not well-informed and instead apologize when those people learn I’m autistic—or worse, tell me I need to keep quiet about it. It is because of Autism Speaks that anti-autism and autism-ignorant people are anti-autism and autism-ignorant.

For several years, I was unhappy in my own skin. I cut, took a lot of pain pills, and wanted to die. I was ashamed of who I was—not only from years of abuse, but from years of hearing all about others’ problems, hearing how how I was was anything but normal, and having to hide who I am.

In a psychiatrist’s office, a particular family member told the doctor, “Isn’t there anything she can take? A treatment she can undergo? She’s just not normal, and I don’t know what to do anymore. People don’t live like this.” From there, she gave an array of mental disorders I don’t have—and have been tested multiple times for—in an attempt to have medication prescribed to me to make me “normal”—”again”.

This is stigma. Rather than trying to cure ignorance and create a world where we, as humans, can coexist, Autism Speaks is promoting a world where ignorance lives on and autistics, the different, should be eradicated—and they are separating autistics into two groups: high-functioning (i.e. autistics not needing recall; the less disabled) and low-functioning (i.e. autistics needing recall; the more disabled). Children are told to be themselves, but child autistics are, according to Autism Speaks, supposed to be taught how to be someone other than themselves. Through training, Autism Speaks encourages parents to perform drills on children to condition them into something that is not themselves, but will allow them to be more accepted into the general anti-autism society—and then they’re rewarded, much like a dog owner trains their dog to sit, fetch and beg.

This sort of training is horrendous, especially since it teaches people of autistics to, for example, not respect their personal space. Touch is a sensitive thing to many autistics. I, for example, hate touch, and as a result, some people feel I need to “just get used to it”, or that I will “grow out of it” someday, or they try to find other reasons, like my history of abuse. Honestly, 95 percent of the time, I’m not “thinking” about my abuse history, much to many others’ [rather annoying] presumptions. I’ve never liked touch, but that doesn’t stop the apparent why that has some need to be found so it can be fixed.

The most Autism Speaks has done for me, an autistic, is cause my family and people close to me who don’t know better to rely on the stigma and not embrace the different—to not long for a new way to connect with people.

Rather than truly trying to understand us and communicate with us, they are wanting to dispose of us, namely the low-functioning—because they see autism as a horrendous disease; because they have been raised to accept only one way of communicating, one way of connection and one way of thinking. They are not the ones with the power to truly change the world for the better, because they do not and will never accept change.

Dr. Cameron: Is it so wrong for them to want to have a normal child? It’s normal to want to be normal.

Dr. House: Spoken like a true Circle Queen. See, skinny, socially-privileged white people get to draw this neat, little circle, and everyone inside the circle is normal. Everyone outside the circle should be beaten, broken and reset, so they can be brought into the circle. Failing that, they should be institutionalized—or worse, pitied.

That time when House, M.D. totally nailed autism in episode 3×04, “Lines in the Sand”

When I try to imagine autism as a disease, I can’t. Because I live a life as an autistic, I know the good that comes with it. Wanting to find a cure for a disorder I don’t have would be like me saying schizophrenia should be cured. But what if, in the mass of schizophrenics, there is [at least] one person who has this massive idea that could change the world for the better because of their schizophrenia? What if they use their schizophrenia to do what they do now?

To strip them of their schizophrenia could change them completely.

Wanting to strip me of my autism is like wanting to cure me of my bouncy, brunette locks or change the person who gave birth to me.

Instead of separating people by what defines them, we need to learn to coexist.

It wasn’t until I stopped fighting against who I was and started fighting for who I am that I was at least somewhat happy. Sometime last year, I started to have this feeling of not wanting to kill myself. I’m not cured of my PTSD or depression, but so what? In accepting my autism and acknowledging it is a part of me, I became a little bit happier. In order to do this, I had to step away from Autism Speaks. I chose to “Unlike” on Facebook all of their pages and pages supporting them, as well as pages similar to Autism Speaks. Circa 2012, I found Everyday Asperger’s, a blog by an Aspie whose son is also an Aspie. I realized she was happy with herself, as were many other autistics, and I realized that I wanted to be happy with myself, too. I wanted to be okay with my autism.

I wanted people to stop apologizing for my autism.

The problem people have with autism is the stigma—which was mainly caused by Autism Speaks—surrounding it. Autism Speaks’ promotional tactics create fear in the world that causes those who don’t fully understand it or know what it is to think and believe autism is an awful disease that needs a cure. They made up statistics about how autism ruins marriages, how autism causes family gatherings to become “impossible”.

To those of you who support Autism Speaks, do you know what their “treatment” methods are? Do you know what this alleged “cure” is supposed to do? Do you know their purpose?

Did you know they promoted the Judge Rotenburg Center?

(There’s a video here, but trigger warning: it’s hard to watch.)

It sickens me when I see others promoting Autism Speaks, saying they’re a proud sponsor/partner of Autism Speaks, and truly believing they’re contributing to a better world for humans that excludes autism. Autistics are exploited by Autism Speaks. They help families who think autism is bad—they don’t help #ActuallyAutistic people.

It’s clear that we, as autistics, don’t want a cure [a lot of us]. We’re perfectly fine with who we are.

Ignorance and misinformation are the real problems—not autism.

Tell me, what does eye contact have to do with listening to someone? With hearing someone? When you hear someone say something, you’re not necessarily listening. Any college communications class will most likely tell you that—and if not, you can easily pick up a psychology book from American School, read it, and learn.

If you need to condition your autistic child, or any person, to communicate in the same way you communicate, the problem is not autism—it’s a communication issue. If your mother hates using computers for communication, do you try to change her, or do you instead work your life around a bit to adapt to what she’s more comfortable with? Instead, I could mention a grandmother who text messages, emails, and uses and Facebook because those methods of communication is what her children, grandchildren, and other relatives use these days—thus she has opened her mind to a new kind of communication.

That is what autistics need. If this Twitter battle between the #ActuallyAutistic and #AutismSpeaks10 (now at #AutismChampion) changes the way the world talks about autism, and even diminishes the negative views surrounding autism, just a little bit, then all of this would have been worth it.

Autism Speaks changed their hashtag from #AutismSpeaks10 to #AutismChampion because the #ActuallyAutistic hijacked #AutismSpeaks10. Unless I’ve missed it an article where they accepted an interview request, they have denied all interview requests from bloggers and news groups pertaining to the #ActuallyAutistic fighting back. Shouldn’t that say something? Shouldn’t that alone be enough proof that they don’t listen to us?

When you support Autism Speaks, you’re making it okay for them to promote BS like the commercial below. They still show this commercial, by the way—I saw it when I was out of town for Christmas and was extremely appalled.

What the hashtags mean

In the event that you want to join the conversation, here’s a translation:

  • #AutismSpeaks10 celebrates 10 years of Autism Speaks’ unfortunate existence.
  • #ActuallyAutistic is a community of real autistics speaking, as well as proud parents of proud autistic children. A lot of it is really heartwarming. I’m loving the stuff from the parents about their kids—my heart is so gooey!
  • #AutismChampion was originally for autistic champions as per the Autism Speaks definition, but that was hijacked, too, and is now for autistic champions as per the #ActuallyAutistic community’s definition.

Further reading

Meme lovers

‘Cause, ya know, they’re irresistible.

Let’s change the way people anti-autism allistics view autism and start coexisting. Listen to the #ActuallyAutistic—not Autism $peaks.

(And let’s make Autism Speaks go extinct.)

P.S. Don’t buy Lindt’s Gold Bunnies this Easter (or Lindt chocolate at all)! By doing so, you’re supporting the aforementioned charity hate group.

Jane Lawson is a lifestyle blogger at janepedia.com and cousin to Charlise. In her free time, you can find reading or streaming on-demand. The quickest way to her heart is through mint chocolate chip ice cream.

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