The Theatre Community Should End Its Support of ‘Autism Speaks’

Emily Paige Ballou is an AEA stage manager based in NYC, and a volunteer for the Autistic Women & Nonbinary Network (AWN).

Recently, the release of the trailer for Music, the feature film directorial debut of Australian musician Sia, touched off another round of outcry about the portrayal of autistic characters much like those we’ve seen before (1) in response to productions like Atypical and All in a Row, and while the current dispute is covering some familiar ground in terms of calls for autistic actors to be cast as autistic characters, I have also been glad to see the discussion broadening into larger issues of how stories about autistic characters are treated and accessibility of the production process to autistic performers and storytellers.

Autistic actress Ashley Wool, in her post on OnStage Blog (2) in response to the situation, notes that while autistic and disabled performing artists regularly speak out to protest these kinds of portrayals, the wider performing arts community does not, though I hope that that will start to change with the coverage this latest dispute has received in mainstream, high-profile entertainment industry outlets (3, 4).

With the upcoming official release of Music this week, I write with a related frustration:

This industry has a problem with support for ‘Autism Speaks’.

From Sesame Street and productions like Music, to the public support of figures like Ed Asner, William Shatner, Matthew McConaughey, and Lin-Manuel Miranda and Christopher Jackson for the organization, to—and this may be anecdotal—the fact that virtually any time I see a colleague from the theater world hosting a Facebook fundraiser for anything autism-related, chances are that it’s for Autism Speaks, there is a bizarre degree of support in the entertainment industry for an organization as regressive in its views of the people it claims to serve as Autism Speaks.

While countless articles and blog posts have been written detailing some of the major problems with Autism Speaks and the autistic community’s opposition to them (5, 6), this information hasn’t seemed to make an impact, frustratingly, in the performing arts community to the same extent it has elsewhere. I would like, therefore, to draw attention to a few issues I hope might be of particular concern to the arts community.

1. As of 2/9/2021, Autism Speaks has a recommendation on its website about withholding AAC access in order to coerce more desirable behavior from a child (7).

AAC stands for Augmentative & Alternative Communication and may refer to a variety of devices or methods by which a non-speaking person might communicate, including use of a keyboard, pointing to a letterboard to spell, eye-tracking software, or apps that convert text or pictures to speech on an iPad or a dedicated device. The system set up by SLP (speech-language pathologist) Christina Hunger to allow her dog Stella to “talk” to her, for instance, is a rudimentary AAC system (8); the computerized speech generator used by Stephen Hawking for many years is a more sophisticated one.

According to Autism Speaks, a legitimate use of an AAC device is to “reward” a child with access to their ability to communicate, for extremely limited intervals of time, in exchange for whatever other behavior a parent or therapist might desire.

This isn’t something we would ever accept or condone with regard to non-autistic and non-disabled children, or that a responsible pediatrician or therapy provider would ever recommend—that a child’s right to communicate be held hostage to compliance with behavioral demands they may or may not be able to meet or that might or might not even be in the interest of their own health and safety.

It is deeply at odds with all good science regarding how young children acquire and gain competence with language (9), and with known best practices regarding the introduction and modeling of AAC (10).

And it cannot be in line with the values of people who make art and theater for a living, whose very vocation is communication in infinite variety.

Autism Speaks flatly doesn’t support autistic people’s freedom of communication and expression, and in particular, autistic children’s right to access language.

2. Autism Speaks supports conversion therapy.

What I described above is a common aspect of a therapy called Applied Behavioral Analysis (ABA), often regarded as the “gold standard” therapy for autism.

And ABA is, in essence, conversion therapy. What we have come to know as “gay conversion therapy” is a direct descendant, by way of George Rekers and the Feminine Boy Project, of the Applied Behavioral Analysis formulated by O. Ivar Lovaas and practiced on autistic children (11).

As originally practiced, ABA relied heavily on outright physical abuse and considered autistic children to be little more than collections of the raw components of people, not actual people.

You will probably hear, if you ask one of its practitioners or apologists, that “ABA isn’t like that anymore,” and while it’s true that its methods have evolved somewhat, its goals remain oriented towards undermining somebody’s bodily and mental autonomy in the interest of training them intensively to pretend not to be autistic, and obey adult commands without question.

It is cited frequently by survivors as probably a contributing factor to the state of affairs in which 80-90% of girls with developmental disabilities have been a victim of sexual assault or abuse.

And while we celebrate anew each time another city or state bans conversion therapy for use on LGBTQ+ kids, ABA not only remains 100% legal in every city and state of the United States, insurance is usually required by law to cover it.

That’s substantially due to the lobbying of Autism Speaks (12).

And this also can’t really be a value of a community that has been such a haven for so many queer people, marginalized people, and people who have felt like outcasts in any number of ways. To say that this treatment we consider so irredeemably damaging and dangerous that we’ve banned it for use on a minor because of their gender expression or sexuality, but if you’re autistic? Then it’s not only totally fine but necessary and desirable to train you to behave more normally as a condition of your rights and inclusion in society.

Incidentally, the rate of non-heterosexuality in the autistic population found in preliminary research is around 70% (13). So it’s not really possible to condone ABA for autistic kids without implying that we’re actually perfectly fine with the use of conversion therapy on queer and trans kids, just so long as it’s being done to them because they’re autistic.

You can’t both sing “Let Your Freak Flag Fly,” and stand for that.

3. The founding family of Autism Speaks are huge Trump supporters.

Bob Wright has been implicated in the initiation and development of Donald Trump’s anti-vaccination and “autism epidemic” beliefs (14).

Everyone who ever shared that meme of Trump imitating the hand and arm movements of journalist Serge Kovaleski, captioned “For the life of me, I can’t understand how this wasn’t the end of it?”

Well, it’s because Trump tells people that he shares their fears and their hatreds. And a lot of absolutely normal, everyday people actually hate and fear disability and disabled people, and especially developmentally disabled people.

And it rings hollow when you say you don’t understand how what happened in 2016 happened after he “made fun of a disabled reporter,” and then you give money to Autism Speaks, founded by one of Trump’s biggest political supporters.

If, on the other hand, you are truly, truly shocked and appalled by Donald Trump’s treatment of disabled people, then Autism Speaks does not represent beliefs about disability that I think you probably, in your heart of hearts, want to be a part of.

4. When you support or consult with Autism Speaks within the theater and arts community, the views and attitudes being reinforced within this community impact those of us who work in it, both as performers and behind the scenes, in a never-ending feedback loop.

It impacts our ability to be taken seriously as both autistic people and professionals when the attitudes about autism propagated by Autism Speaks hold sway.

It impacts our ability to advocate for our rights and accommodations at work, because, again, we can either be taken seriously as autistic people or as professionals, but not both. Because in the view of autism upheld by Autism Speaks, autistic people have either real disabilities or the ability and right to advocate for ourselves. Not both.

Because we fear losing our credibility with you as fellow professionals. We fear losing our employability if we are known as autistic people when the predominant view of autistic people is infantilizing and objectifying and considers autism and competence mutually exclusive. What do you think it does to our employability as openly autistic people in an industry built on communication, cooperation, and empathy when the most supported organization promotes a view of us as fundamentally deficient in those things?

And as even more issues have emerged with the approach of the movie’s theatrical release, including leaked scenes of a method of restraint known to have killed people (15) being presented as an appropriate manner of dealing with an autistic person’s meltdown (16), I have to question not only Sia’s sources of information but what on earth Maddie Ziegler’s adult costars of this film (Kate Hudson and Leslie Odom, Jr.) were thinking. Did they see anything wrong with these scenes? Did they think to ask or speak up, or did they think it was fine? Did they have concerns about accepting roles in this movie in the first place or about the support it later garnered from Autism Speaks?

These are the ways in which lack of knowledge about these issues resonates both through the industry and into the wider world. If even one adult, non-autistic star of this movie would’ve said something, could it have changed how all this has played out so terribly for everyone involved?

I’m actually tired of sad-facing your birthday fundraisers on Facebook, and I’m tired of straining and losing friendships and working relationships over this. You have more autistic colleagues than just me, I promise. You have a lot more. And it sends a message when you support Autism Speaks. It would be unthinkable for someone in this business to claim to support LGBTQ+ people and then fundraise for or seek consultation with the Family Research Council. It should be equally absurd for Autism Speaks to be able to find any support in this community.

UPDATE: Since publication, the author has been made aware that Autism Speaks has updated their webpage on use of assistive devices as rewards for behavior with a note reading 'Note: This should only be used by those who do not use their device for communication. As stated above, If you’re using the device for communication, make sure it’s available all the time; you don’t want to take away his or her voice.' While this is a slight improvement over their prior position, it remains problematic in the extreme for access to anyassistive device to be made contingent on behavioral demands. Autism Speaks continues to appear to be unaware that autism is not a disorder of behavior or motivation.

References
1. https://electricliterature.com/stop-using-autistic-characters-as-plot-devices/

2. https://www.onstageblog.com/editorials/autistic-actress-deconstructs-sias-music-mess

3. https://ew.com/movies/sia-music-movie-autism-controversy/

4. https://variety.com/2020/music/news/sia-debate-twitter-disabled-film-autism-music-1234837013/

5. https://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/

6. https://adiaryofamom.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

7. https://www.autismspeaks.org/tips-using-assistive-technology-devices

8. https://www.youtube.com/watch?v=bJCxrc7Ns_g

9. https://childmind.org/article/helping-toddlers-expand-their-language-skills/

10. https://teachingunicorn.com/2019/10/18/we-have-aac-now-what/

11. https://catalystjournal.org/index.php/catalyst/article/view/29579/23427

12. https://www.autismspeaks.org/health-insurance-coverage-autism