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February 12, 2020

Autism Speaks got you fooled

Last updated on February 21, 2021

The Autistic Wolf came up with a new campaign to claim April Fool’s as an autistic “coming out” day.[1]Our Golden Moment | The Autistic Wolf | Facebook The campaign has since been revised, and now wants to claim April Fool’s as a Day of Kindness. I love and support messages of kindness, but I have some ideas about how we can strategize so that we don’t inadvertently feed the beast.

In this post, I will explain how kindness could lead to our own detriment if we’re not careful enough, and how a Day of Kindness may inadvertently lead to financing Autism Speaks.


Coming out

First, let me briefly explain why the original campaign to come out as autistic on April Fool’s—while noble in its pursuit—was perhaps not the best idea:

  1. If the dislike of April 1st is shared by so many autistic people (a sentiment that motivated the development of the campaign), then the ideally positive experience of becoming publicly autistic would be associated with the dislike of that day. As such, some people urged for the day to be the day before or after April Fool’s.
  2. It is very difficult to claim a day that is already an international custom day, because any campaign you will set up is going to get at least partially buried in sentiments of the more popular celebration. It’s going to be a lot easier to organize something on a day that isn’t already claimed by an international custom. Although a counter-argument might be that doing it exactly on such a day might garner some attention due to its subversive nature. It’s hard to tell which way it would go. I suppose it depends on how much traction you can get before the day.
  3. You wouldn’t want to associate anything related to autism with April Fool’s if you want to be taken seriously, considering it’s famously a jokes-and-pranks day. I would stay away from the 1st and 2nd of April with any autism-related matters. The association is won’t reflect well on us.
  4. If you were to come out as autistic on April 1st, you may not be taken seriously considering it’s a prank day. I think this will add social pressure.
  5. There are likely going to be a lot of people that come out as autistic as a prank. So this might set autism up for mockery.
  6. Some people from the LGBTQ+ community are displeased with the appropriation of the term “coming out”. I suspect the definition and use of the word are going to broaden regardless of the community’s displeasure, and arguably the term is already non-specific to the LGBTQ+ community, but it’s something to consider.

Most importantly though, I have serious concerns about increasing social pressure for autistic people to publicly acknowledge that they are autistic. I think everyone should do this in their own time, when they feel it’s appropriate and safe. Yes, there is definitely something to be said about creating a positive environment/atmosphere in which autistic people feel more solidarity and comfort so that they are able to become openly autistic. But the problem is that you can’t control other people’s environments and guarantee safety on a local level, so there is a distinct risk that some people who want to be part of this positive movement and disclose their autism will face dire consequences.

So I applaud The Autistic Wolf for her efforts to unite us. That is great! But I am concerned about some of the potential consequences.


A Day of Kindness

The great thing though is that the Autistic Wolf listened to the community’s concerns, and together with Terra Vance from NeuroClastic, they have revised the campaign to be a day of kindness. Terra writes:[2]April golden moment day plan | The Aspergian Contributors | Facebook

People (autistic or not) can pledge to do acts of kindness on that day instead of pranks—things in the service of the Greater Good. This shifts the narrative from us being charity cases to us being charitable.

You can read more about the campaign here:

Our Golden Moment

I love the idea of rebelling against April Fool’s by shifting the perception of autistic people from charity cases to people that are charitable themselves! But the more I think about this, the more I realize how important it’s going to be to take proactive measures to ensure that we don’t:

  • Put undue pressure on autistic people.
  • Conduct business in a way that inadvertently advantages Autism Speaks.

A movement with such potential needs to be carefully executed, and even then, not everything can be controlled for. Of course, all opportunities for progress come with risks. Fortunately, it’s a virtuous circle, as the risks may create more opportunities for progress, too.


Detrimental kindness

One thing that should be considered is that for autistic people, their kindness often makes them vulnerable to exploitation. For example, I often do things for other people for free, because I am passionate about what they do, or I care about them and want to help them out. And I do this not just for friends, but for people online that said something nice to me once. And this has become a real issue for me, because more often than not I find myself getting nothing in return. So at the end of the day, yes, I have been kind, I have helped someone, and it made me feel good for a while, but how does that actually serve me long-term? In my experience, it usually doesn’t. And worse, it can make me feel devalued when I keep doing it, and when I ask others for help, I get nothing back.

So I don’t need an annual day to urge me to be kind, when my exact problem is that I am already kind to my own detriment all year, every year. Maybe this is just a personal problem, but I believe it to be quite common among autistic people. I hear quite frequently how autistic people have had enough of that, and finally decide to be less kind and more assertive of their needs. I applaud that! I have heard several New Year’s resolutions from autistic people to that effect. I think neurotypical people might be surprised by some of our New Year’s resolutions.

So on an individual level, kindness doesn’t necessarily serve us. But has autistic people’s kindness done any good so far for the general perception of autism? It might have, but I haven’t seen much to that effect. So is being kind on a national day going to serve autistic people, or just people that will use us? I hope it will not become a national day where we do more work for others and get nothing back.


Be kind

Let me briefly talk about something else. This connection will make sense in a moment. The notorious Autism Speaks has revealed an updated logo,[3]Introducing the new Autism Speaks! | Autism Speaks and a new campaign urging people to be kind.[4]What does kindness mean to you? #KindnessCounts | Autism Speaks | YouTube

The logo for Autism Speak’s ‘Be kind’ campaign.

The first time I saw this, I felt it was sinister. Oh of course I support the message to be kind, but my concern is that this can easily be used to shut down dissent. “You’re being critical of the good we do? Why can’t you just be kind?” I’m not necessarily saying that Autism Speaks will use this tactic. Rather, I can see how many other people will use such arguments against autistic people who voice legitimate concerns.

I also find the ‘Be kind’ message quite eerie coming from Autism Speaks, because they fund a lot of projects that are not at all in the best interest of autistic people. So this looks like propaganda to me.


Serving Autism Speaks

How does Autism Speaks’ campaign relate to A Day of Kindness? Well, the obvious connection is that they both urge people to be kind, but that is not my concern. Again, I support that message in principle; even though I think autistic people need to be more assertive of their needs, it would be lovely if everyone were kind(er).

But while A Day of Kindness is a way to rebel against April Fool’s, doing that would be profoundly ironic. Because while we rebel against an annual custom, we would be doing exactly what Autism Speaks profits from. How? Let me explain.

Autism Speaks is huge. They have a very powerful marketing team, and spend a lot of money on marketing. They are visible everywhere. Our gold and red campaigns are just a drop in the pond when it comes to Autism Speaks’ blue campaigns. So if we make an impact with A Day of Kindness and show that autistic people are charitable, who will profit most from that? Me as an individual? I don’t see how.

But the greater the public perception of autistic people being kind, combined with Autism Speaks’ awesome marketing that spreads the message to “Be kind”, the more that (autistic) kindness will become associated with Autism Speaks.

And now the biggest concern is that the association between Autism Speaks and kindness will lead to kindness in the expression of more charitable donations to Autism Speaks. After all, that is the kind thing to do. And I suspect that this was actually the very goal of the Be Kind campaign. That autistic people were organizing a Day of Kindness is something I don’t think they were aware of, or possibly care about.

I’m concerned that the kinder we show ourselves to be, the more Autism Speaks will profit from this.


You can say a lot about Autism Speaks, but they are quite brilliant at marketing. Our “rebelling” against April Fool’s may be exactly what serves Autism Speaks.

The kinder we are, the more money potentially goes to research that is detrimental to us. Isn’t that ironic? Your kindness could help cull the autistic gene. So while I don’t know how, I hope the people that are working on this campaign can maintain its course towards positivity and prevent inadvertently financing Autism Speaks and the detrimental research they fund.

This article
was written by:
martin-silvertant

Co-founder of Embrace Autism, I’m living up to my surname as a silver award-winning graphic designer. Besides running Embrace Autism and researching autism, I love typography and practice type design. I also fight dodecahedragons during sleep onset.

I discovered I’m autistic when I was 19, and was diagnosed at 25.

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