Autism Awareness Month in the Time of Covid-19: Support Actually Autistic People…Seriously

Image Description: Photo of a blackboard that says "Support #ActuallyAutistic People" with a multicoloured infinity symbol at the bottom
Image Description: Photo of a blackboard that says “Support #ActuallyAutistic People” with a multicoloured infinity symbol at the bottom

Once again April is nearly upon us and along with it the baggage of Autism Awareness Month. Autistic people often dread April with it’s frequently dehumanizing rhetoric about us and a focus on Autism Charities that are often very unpopular with the people they claim to support. April often seems less about raising awareness for autistic people (whatever that actually means) and more a very pervasive fundraising campaign for Autism Organizations whose goals and actions are often in opposition to those of autistic people.

Autistic people exist, you are now aware, can we move on to acceptance and meaningful inclusion and support now?

Traditionally, April is full of people “Lighting It Up Blue” a campaign created by Autism org Autism Speaks. Puzzle piece imagery also abounds which is also largely associated with Autism Speaks but which has become so synonymous with autism that many organizations use it. It is a common feature in April Autism fundraising campaigns. I have seen puzzle piece pedicures which raised money for an organization that had no autistic representation in its governance.

Each year many autistic people protest the corporatization of autism initiatives. We protest the use of the puzzle piece to represent us as we believe it implies that we are broken and require putting back together. The negative associations of puzzle piece iconography has been backed up by research.

Autistic people tend to prefer the symbol of a rainbow infinity symbol which celebrates neurodiversity.

Image Description: Infinity symbol in a rainbow gradient
Image Description: Infinity symbol in a rainbow gradient

One of the most common issues of contention is the continued popularity and public support for Autism Speaks which is so unpopular in the autistic community that many consider it a hate group. We have been explaining why for years. There are many accounts by autistic people explaining their continued dislike of the world’s largest autism charity. There are even videos.

Yet, every year when an autistic person expresses dread of April and the inevitable inundation of Autism Speaks fundraising, we still get asked why?

This year is different though. This year we are heading into April in the middle of a global pandemic. This year might offer autistic people a brief reprieve from what many of us have renamed “Autism Bewareness Month”. It will be harder for organizations like Autism Speaks to roll out their huge campaigns in a world that is social distancing (something that autistic people are really good at by the way).

That does not mean that the world should look away from autistic people this April. This year is instead an opportunity to refocus on supporting autistic people more directly.

I know that I am not alone as an autistic person in experiencing a heightened state of financial anxiety as a result of social distancing. I also have a physical disability that adds nutritional anxiety as I cannot grocery shop on my own both because of physical barriers and that I am a higher risk for serious coronavirus infection.

Many of us might already be champions at social distancing but we are particularly at risk of extreme poverty and not being able to find the supports we need to get through this pandemic safely.

So this year I would ask that if you are able that you directly support autistic individuals and organizations that are run by and for autistic people.

You can support me by sending me money directly through paypal (I will include more ways to support me and my work at the end of this post).

You can also support autistic creator like Amythest Schaber (whose video can be viewed earlier in this post). Amythest is also an artist with a shop on Redbubble where they sell beautiful autism and disability inspired art.

Image description and art print of the word Neurovidersity in a rainbow gradient with sparks like neurological connections on a black background. It can be purchased here

There are also autistic authors who write beautiful autistic characters. I recommend On The Edge of Gone by Corinne Duyvis.

My friend and amazing writer Sarah Kurchak has a memoir coming out on April 2, and the book launch has been cancelled due to coronavirus but you can and should preorder her book I Overcame My Autism and all I Got was this Lousy Anxiety Disorder. Autistic comedian extraordinaire Hannah Gadsby is a fan.

Image description: Book cover for I 
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads "A treat to read, I'd recommend this book to anyone who struggles to connect to the world, even if you don't call that struggle Autism"  A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.
Image description: Book cover for I
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads “A treat to read, I’d recommend this book to anyone who struggles to connect to the world, even if you don’t call that struggle Autism” A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.

You should also go watch Gadsby’s phenomenal comedy special Nanette on Netflix.

These are just a few of the amazing autistic people you could be supporting and learning from this April. We are sheltering in place after all, what else are you going to do?

Aside from directly financially supporting autistic individuals, you can also support better autism organizations whose leadership is full of autistic voices and whose goals more clearly support the wellbeing of autistic people. Organizations like The Autistic Self-Advocacy Network, The Autistic Women & Nonbinary Network, and Autistics 4 Autistics.

In the midst of the stress and fear that this pandemic has caused please don’t forget autistic people this April. Use the opportunity of the time afforded by social distancing to learn more about autistic people from autistic people rather than making a shallow visual show of support that benefits a charity more than the people who require the support.

Let’s get past autism awareness and move on to autism acceptance and inclusion.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

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You can buy me a coffee

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Or send me money directly through Paypal

paypal.me/crippledscholar

Dear Judith Newman, I’m Writing this For You because You Didn’t Write For Me

 

boycott to siri

Image Description: Text “BoycottToSiri” in white on a black background

 

Dear Judith Newman,

I have not read your book To Siri With Love and I frankly don’t intend to. I know this will frustrate some people, maybe even you but I don’t actually think it is relevant to the thing that I want to criticize. I have seen my fellow actually autistic people in pain from your book. I have read their critiques and there are things about your book that quite frankly are unlikely to be saved by added context. The transphobia that exists in the introduction to your book, that you wrote that you wanted the power to sterilize your son, the sexist and disrespectful way you referred to Amythest Schaber.

Yes, yes I know, you’ve since said that you no longer plan or intend to sterilize your son. The thing is it’s too late. You published that awful bigotted sentiment in a best selling book, you can’t take it back now. The damage of that awful statement is already done. Even if you remove it from subsequent editions, it’s still out there and that message will be stronger and longer lasting than any weak backpedalling you do now.

You claim that you apologized to Amythest but as far as I’ve seen you’ve at best made a fauxpology and at worst you’ve simply made excuses. You also still clearly don’t understand why what you did was wrong, so I will again try to explain it to you. There are two major issues.

You described Amythest as a manic pixie dream girl. This term describes a narrative device where a female character (usually quirky) exists entirely for the benefit and consumption of a straight male protagonist and the presumed straight male audience.

You did somewhat address this critique but I have yet to see an actual apology. You have so far only been sorry that your intent was not effectively conveyed. You say that you thought the term was just a more modern version of gamine (a word so obscure I admit I had to look it up). You were just trying to be down with the kids. This response shows that you didn’t understand the other part of why calling Amythest a manic pixie dream girl was inappropriate.

You shouldn’t have been describing Amythest at all. What does what Amythest looks like have to do with the YouTube videos you were citing? Nothing. Reducing Amythest to a physical descriptor regardless of the underlying meaning of the intended compliment was itself inappropriate. People did not need to know that you think Amythest is gamine (a girl with mischievous or boyish charm) to know those videos are full of great information.

The thing I really want to talk to you about though is your response to the backlash from actually autistic people. You brushed off those criticisms by saying that you did not write your book for us.

This is a big problem especially for someone who claims to be autism friendly. With this statement, you prove that autistic people are just props for you. You did not care about the impact of this book on us. You also hide behind stereotypes to deflect from criticisms.

Apparently, we can’t understand your book because you put jokes in it. I can’t speak for all of us but I assure you there are many autistic people who understand jokes. We also know when they are not funny or at our expense.

There is something so utterly isolating about being told that a book where autism is central to the narrative was never intended for autistic people. Are we not part of the population? Do we not read? Shouldn’t you have considered that we might read it? That we are hungry for good representation?

If you are as autism friendly as you claim, shouldn’t you care more about what we have to say? Did you consider getting a sensitivity reader before you published?

You did not write for us and because of that regardless of the content of your book, you promoted our continued marginalization.

You wrote about us without our input to be consumed by people who already think of us as other. By erasing us from your inteded audience you turned us into zoo exhibits.

You did not write for us and the only real reason for forgetting that any part of the population might be part of your audience is because you forgot or don’t acknowledge that we are.

I write this for you because you did not write for me and I want you never to forget that autistic people read your book anyway. autistic people had opinions on your book anyway and you did not listen. Worse than that you have tried to actively silence us.

You did not write for us. Well too fucking bad, we remember that we human even if you and Harper Collins forgot. We’ll read whatever we want and protest when it hurts us. Rave reviews from Jon Stewart be damned.

I write this to you to remind you that regardless of your intent you have caused harm and your response to that has been erasure.

I write this also for anyone who thinks they can write about a marginalized group to which they do not belong and deflect backlash with “well I didn’t write it for you” as though that erases the harm instead of increasing it tenfold.

Sticks and stones may break my bones but silencincing autistic voices hurts far more than me.

Sincerely,

Kim Sauder (Actually Autistic)

 

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