Autism Awareness, Light it Up Blue, and the Puzzle Piece

Tomorrow, April 2, is World Autism Awareness Day. First celebrated on April 2, 2008, it is a day in which member states of the United Nations are encouraged to raise awareness about autistic people. Nowadays, when people think about autism awareness, the first thing that comes to mind is, you guessed it, Autism Speaks, specifically the “Light it Up Blue” campaign. I’ve already talked in general about what Autism Speaks does, and how it doesn’t help autistic people. Today I’ll take a closer look at their awareness campaigns.
Let’s start with the most recognizable symbol of autism awareness, the blue puzzle piece. Something I want to point out is that it’s not just any puzzle piece. It’s part of the outside of the puzzle. Yes, it’s part of the outside of the puzzle, and you can tell because of the flat end. The other point is that the puzzle piece is blue, which wouldn’t be considered strange… until you find out why. The puzzle piece is blue because most people diagnosed with autism are male. This essentially erases the fact that female autistics exist, actually around 1 female is diagnosed as autistic for every 3.25 males. (This is also the reason that they say light it up blue for autism) The fact that the puzzle piece is a frame piece implies that not only are autistics missing a piece of the puzzle, it’s one that implies we are lacking, that we are less than because on the sole merit of our autism. First of all, I would like to point out that I am not a puzzle. I am a person, and the fact that I am autistic does not mean there is something missing, I may be different but I do not lack.
Autism Speaks also holds events for Autism Awareness month. They sell merchandise, hold fundraisers, do autism walks. As I’ve written previously, the money that Autism Speaks receives from these events does, for the most part, not go to help autistic people. Furthermore, Autism Speaks uses fear language and tactics during these walks. They instill a fear of this “monster” that they make autism out to be and make parents hope and wish for a cure. This year they have changed their language to claim that they are raising awareness and acceptance, but considering the track record of the organization it feels… hollow.
So what can you do instead? Go for red instead, or use the rainbow infinity. Instead of donating to Autism Speaks, if you live in the US, I recommend ASAN (Autistic Self Advocacy Network), AWN (Autistic Women & Nonbinary Network). I apologize for not being able to give recommendations outside of my own country. If you’re on twitter, check out #actuallyautistic and #redinstead. Read what autistic people are saying. Listen to said autistic people.
Thank you.

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Autism Speaks Doesn’t Speak for Me

The first website that comes up when you Google autism is Autism Speaks. Most people who are trying to learn about autism are referred to Autism Speaks. This organization has risen to infamy in the autistic community for budgeting choices, advertising, lack of representation in the organization, and well, preventing autism. Generally, this organization is a bad time all around.

Let’s start with the budget. In 2016, Autism Speaks spent a paltry 1.6% of their budget on “Family Service”, which is how the organization funds services for autistic people. That isn’t much for an organization that claims to help autistic people. In contrast, Autism Speaks spent 16% of their budget in advertising. That’s 10 times as much! Twice that (32%) was used on research. (I’ll get to what they’re doing with said research) It doesn’t get better, either. 42% of Autism Speaks’ 2016 budget went to “awareness” and lobbying. So the awareness and lobbying budget is more than 25 times the size of the Family Service budget? Are we sure they’re actually aiming to help autistic people?

As of 2016, Autism Speaks has two openly autistic people on their 26-member Board of Directors. In doing this, Autism Speaks have effectively shut out autistic people from an organization that claims to help them. This is not because of lack of options- there are many autistic people who are advocates that Autism Speaks could have brought on the Board. Instead, the organization has chosen to not listen to autistic people speaking. Oh, the irony. Maybe if they had more autistic people on the Board they’d stop coming up with such terrible advertisements and ways to talk about autism, I’m just saying.

Autism Speaks has previously compared autism to childhood diabetes, cancer, and AIDS. In 2009, they released a short video called “I am Autism”, painting autism as some kind of demonic force that would kidnap your child. This video is still on YouTube, of course, because the internet never forgets. If you Google “I am autism”, the first thing that pops up is the video. So it is within the realms of possibility that someone who is just finding out that their child or even they themselves are autistic will come across this video first. Do you know what will happen to that person? They’ll be scared shitless, horrified by this terrifying demon that Autism Speaks deemed necessary to make autism become. Yes, the video is old, but the fact that it exists at all makes me question the mentality of the people behind it. This is not the only time the organization has treated autism as a disease that needs “curing”. In 2015 Autism Speaks released a PSA called “The World of Autism”, where they talk about an autistic boy who is non-vocalizing, didn’t like change, is averse to bright lights and loud sounds, and flapped his arms. In the video, they show the clay boy grow wings and become a human, instead of clay. Glossing over the whole clay world thing (it was weird, but we have bigger issues to deal with here), the video talks about “early intervention”. By early intervention, they mean ABA, or applied behavioral analysis. Now I personally can’t talk about ABA, since I never experienced it, but I will link to an article written by an autistic woman about ABA:

https://awnnetwork.org/my-thoughts-on-aba/ (Written by Amy Sequenzia)

The founder of Autism Speaks, Suzanne Wright, has also said in an interview that she dreams of a day where autism would be a “word for the history books”. I have a feeling she didn’t mean that she just wants autism to be recognised by history.  The last bit of advertisement released by Autism Speaks I want to talk about is a documentary called “Autism Everyday”, in which a mother recounts the time that she sat in the car with her autistic child and contemplated driving off the George Washington bridge. If you watch the clip, you notice that her autistic child is in the room with her as she talks about thinking about committing suicide and murdering her child. Yeah hi WHAT. This video clip is on YouTube (once again, the internet never forgets) and one single video has 1.8k views.

You remember that 32% of Autism Speaks’ budget that went towards research? A portion of that is funding programs like MSSNG (pronounced missing, no it’s not just you that finds that offensive), an open-access genomic database used by autism researchers to find tests for autism (including prenatal ones) and causes for autism. They also fund the Autism Speaks Autism Treatment Network, a network that works to help with health problems that autistic people might have. However, as with all nice things Autism Speaks does, the ATN also works to treat “problem behaviors” in autistic people.

I will deal with the awareness part of the budget in another piece, because that is its own epic saga of terribleness. Just know that it doesn’t get better from here.

So, am I sure that Autism Speaks is not only generally a bad time, but doesn’t speak for me at all? Why yes, yes I am.

On Anti-Vaxxers and Ableism

Previously, I tackled the great vaccine debate. However, as I am one tiny person on the internet, supporters of the anti-vaccine movement haven’t really listened. So, today I’ll be discussing how anti-vaxxers, specifically those who do not vaccinate because of the connection that they insist vaccines have to autism, are inherently ableist.

We are now facing several outbreaks of serious diseases that are preventable by vaccines. As of March 21, 2019, the CDC has confirmed 314 cases of measles in 15 states, the majority of cases being people who were unvaccinated. That’s not a small number of people, and that’s just one disease. As of February 28 of this year, 151 cases of mumps have been reported, which brings us up to 465 combined cases in the first third of the year. So, how do anti-vaxxers feel about all of this? A quote from an anti-vaxxer:

“I would rather my child have measles than autism.”

Hold up, pardon me, WHAT? So you’re telling me you’d rather risk your child having a hearing impairment (1 out of 10 measles cases lead to ear infections that could leave the person permanently hearing impaired), encephalitis (1 out of 1000 cases) or dead (1 or 2 out of 1000) than… autistic? That’s some extreme ableism. This is the root of the issue: anti-vaxxers know that their children may get these diseases. Some of them know that said diseases can kill. They don’t care. I’ve seen anti-vaxxers state that they’d rather their child be dead than autistic, and that is downright sickening. The fact that a person would be so opposed to autism that they’d rather put the lives of their children and even other people at risk is nothing short of appalling.

The anti-autism sentiments expressed by some members of the anti-vaccine movement are ableist to the point of danger. Enough is enough.

Do Vaccines Cause Autism?

By now, most people have heard of the anti-vaccine movement, but just in case you haven’t, I’ll explain: the anti-vaccine movement is a movement opposed to the use of vaccines. One claim made by the anti-vaccine movement is that vaccines cause autism, citing sources such as Andrew Wakefield and vaccine inserts.

Let’s start with the man who the anti-vaccine group likes to reference a lot: Andrew Wakefield, a (discredited) former British doctor who became an anti-vaccine activist. He was a gastroenterologist who was struck off the British medical record for “unethical behaviour, misconduct and dishonesty for authoring a fraudulent research paper that claimed a link between the measles, mumps and rubella (MMR) vaccine and autism” (Wikipedia). The Indian Journal of Psychiatry states that Dr. Wakefield published a case series in the Lancet, suggesting a connection between the MMR vaccine and predisposal to behavioral regression and pervasive developmental disorder in children. However, he suggested this connection after conducting a study… with 12 subjects. I don’t know about you, but I’m not about to trust a suggestion made on the basis of a sample size that small. Furthermore, 10 of the 12 co-authors of the paper retracted the interpretation, stating that “no causal link was established between MMR vaccine and autism as the data were insufficient”. So 83% of the co-authors retracted the interpretation, even if it was for a short period of time. Also, I’ve checked the recent MMR insert. There’s nothing about autism in there. Turns out the anti-vaccine movement was quoting the vaccine insert for Tripedia, a DTaP vaccine that was discontinued… in 2011. Eight years ago. The same vaccine insert also states that “it is not always possible to reliably estimate their frequencies or to establish a causal relationship.”

So: do vaccines cause autism? NO. No they do not.

The Myth of Functioning Labels

Often times, you hear that autism is a spectrum. You hear terms like “high functioning autism” and “low functioning autism”.

Today I present a radical idea that autistics have been stating for years: functioning labels are a lie. Really! There was a time that functioning labels were mostly used by doctors in order to determine how much treatment a certain autistic person would need. It’s still used by doctors now, actually. It has never been and will never be effective. Functioning labels have been used to say that since person A is “high functioning, they need less support than person B who is “low functioning”, and can, in most cases, have their needs minimized and ignored. I’m not denying that people who need support should receive support, and people who need more support should receive more support. However, I am denying that the labels of functionality are needed.

Nowadays, functioning labels are often used by Autism Parents who wish to speak over autistic people, particularly autistic people who call them on their bullshit. It’s also used by anti-vaxxers, but I’ll write more about them another time.

Usually the exchange goes like this:

Autism Parent: “Hey I’m going to do this thing to my autistic child that I’d never think of doing to a non-autistic child”

Autistic Person: “Hey you shouldn’t do that”

Autism Parent: “You don’t know my child! You’re high functioning and my child is low functioning! Only I can speak for my child! I am my child’s voice! My life is suffering because my child has autism!”

I have seen this same interaction play out hundreds of times, and I know it plays out even more (I just don’t have the spoons to read all of them). Let me make one thing very clear: your entire argument doesn’t have a leg to stand on. This is because

A) just because someone is non-verbal doesn’t mean that they can’t type.

B) An autistic adult may not know your specific child, but they know what it’s like to be an autistic child.

Every autistic adult was an autistic child, even if they were not diagnosed as children.

C) Just because a person is verbal doesn’t mean they don’t struggle in other areas.

The futility of functioning labels also plays out in receiving treatment. For instance, there are some clinics that don’t accept autistic patients because they are not equipped to treat autistic patients. It does not matter where on the spectrum you fall, if you’re autistic, you’re not getting treatment there.

Functioning labels can also be harmful for autistic people. People who are supposedly are on the higher end of the spectrum are expected to mask their symptoms more, which leads to less treatment and more exhaustion, because masking is tiring business. People supposedly on the lower end of the spectrum are infantilized, abused more often, and are generally treated badly by allistics, simply because they “don’t have a voice”. Functioning labels help nobody who is autistic. At best it’s useless, at worst it’s harmful. So here’s the big question: why are we still using them?

“You Don’t Look Autistic”

My mom taught me sarcasm. She also taught me how to have vocal tones, eye contact, idioms, and how to generally function in a neurotypical world. She encouraged my love of reading, so I could understand how people thought. She taught me science and math, the science out of her love for the subject and the math out of necessity. I became an intelligent child, and an intelligent adult.

School taught me how to act. How to act normal, how to mask my autisticness. I learned that being different leaves you nothing but loneliness and bullying, so I did my best to not stand out (spoiler alert: it failed *so* badly). I was told that the reason I was bullied was because I was “weird”, and if I stopped being “weird” the bullying would stop. I learned to play the part of a neurotypical student, at the cost of my own happiness.

I was 13 when I was diagnosed. Finally I knew why I was “weird”, I figured out what made me different. I remember having a conversation with someone at church and being asked why I did things that other people didn’t do, and I told them it was because I was autistic. The answer I got was something that confused me back then, and still confuses me to this day.

“Oh, but you don’t look autistic!”

What… what does that even mean?!?

Autism, according to the Merriam-Webster dictionary, is “a variable developmental disorder that appears by age three and is characterized especially by difficulties in forming and maintaining social relationships, by impairment of the ability to communicate verbally or nonverbally, and by repetitive behavior patterns and restricted interests and activities”. ASAN, short for the Autistic Self Advocacy Network, defines autism as “a neurological variation that occurs in about one percent of the population and is classified as a developmental disability.”

Now take a look at those two definitions of autism. Do either of them say anything about a “look”? No, no they don’t. That’s because autism doesn’t have a look. The same way someone wouldn’t look like an allistic, an autistic person does not look autistic.

Sometimes, people mean the statement as a compliment of sorts. It’s like a “oh none of your symptoms are obvious!” kind of thing. Fun fact: autistics are able to mask things. It’s how we survive in a world that is not made for us. Since people are expected to understand when someone is being sarcastic or joking, people are expected to maintain eye contact and have vocal fluctuations, autistic people learn these things one way or another and use them, which makes people claim that we may not “look autistic”.

Masking, however, comes at a price. For one thing, it’s really tiring. It also can lead to increased anxiety- if your career is built on masking, one false step can make it all come crumbling down. It also means that your needs may not be taken seriously, because you’re totally fine and not at all having issues or anything. One big problem is that once a person starts masking, they may never be able to put that mask down again.

So that person who you told doesn’t “look autistic”? I implore you to remember the price that they might be paying for it.