Volume 16, Issue 2, 470-473, 2022
Dispatch
Stim, Like, and Subscribe: Autistic Children
and Family YouTube Channels
KENNEDY LABORDE RYAN
Carleton University, Canada
The title of this dispatch comes from a play on words of the ubiquitous
YouTuber call-out, typically uttered within the first 30 seconds of a video
after a cheery “Hey guys!.” “Likes” or “thumbs up” bump up the position of
a video in the site’s algorithm and allow YouTube to fine-tune
recommendations by showing users videos that others who have similar
interests spend their time watching (Arthurs et al., 2018). This dispatch
examines the challenges posed by the family vlogging channel Fathering
Autism (FatheringAutism, n.d.), which focuses on disability and family
dynamics and bills itself as a distinctive voice in the digital disability space. I
aim to question the oft-muddied distinction between education and
entertainment in Fathering Autism’s content, in order to contribute to
discussions surrounding social justice and Autism. Specifically, I question
whether it is ethical to create content that relies heavily on the participation of
a nonspeaking autistic child. This question is part of a larger debate that
considers whether it’s ethical to cast any children in homegrown content,
given the limits to the consent they can give to being filmed.
Asa Maas, the vlogger behind the Fathering Autism channel, has credited
his family’s success on the platform to their overlapping circles of identity.
Maas put it succinctly when he accepted an award at a Healthcare Disruptors
Industry conference in November of 2019: not only is Fathering Autism a
family vlogging channel, it is also an Autism family channel, as well as one
that focuses on an autistic girl. A recent systematic review and meta-analysis
pegged the ratio of Autism in boys and girls at 3:1, which is higher than the
research community’s previously stated and widely circulated benchmark of
4:1 (Loomes et al., 2017). This means that families like the Maas’ are
underrepresented in depictions of Autism, which are only slowly becoming
Correspondence Address: Kennedy Laborde Ryan, School of Journalism & Communication,
Carleton University, Ottawa, ON, K1S 5B6; email:
[email protected]ISSN: 1911-4788
Limits of Informed Consent On Disability Family YouTube Channels 471
more inclusive of girls and women on the spectrum (Thorpe, 2017). The
channel, which has been hosting videos since 2011, focuses on various Maas
family activities. Most of their vlogs, which are posted daily, feature
Jacksonville-based Asa and his wife Priscilla as well as their two children:
17-year-old Isaiah and Abbie who is 14, nonspeaking, and autistic. The
content of the vlogs runs the gamut from coffee runs, pranks, and drone
footage to sensory meltdowns and frank discussions about Autism itself. The
volume of footage that emerges from the family’s lives is astonishing – each
video seems to run at an average of 12 to 20 minutes.
According to SocialBlade, a social media aggregator and analytics platform
that draws from YouTube’s publicly available Application Programming
Interface (API),1 as of December 2019, Fathering Autism had 447,000
subscribers, 1,044 uploaded videos, and 86.5 million unique video views.
SocialBlade estimates the income the Maas family draws from the channel at
somewhere between $2,400 and $38,300 per month, or $28,700 to $459,700
per year (Social Blade Stats, n.d.). These numbers do not include all of the
family’s income streams from the channel: in addition to revenue generated
directly from YouTube, the Maas’s also sell their own line of merchandise
and consult for companies who wish to better serve the needs of their
customers with Autism. They also have quite a robust presence on Amazon
Affiliates, an initiative of the Seattle-based company that allows influencers
to earn commissions on a curated selection of their favourite products.2
An uncomfortable aspect of family vlogs is that performing authenticity
becomes the family business; Fathering Autism is the main source of the
Maas’s income as discussed by Asa (FatheringAutism, 2018). Both parents
work fulltime as content creators, with Asa producing, editing, and recording
daily videos, while Priscilla posts cooking tutorials on her Pots, Pans,
Priscilla channel. Unfortunately, Fathering Autism’s success is predicated on
a representation of Autism that shows neurodiversity through a neurotypical
lens in which the perspective of the autistic subject is wholly absent from the
final product. All of Abbie’s communication, her signing and stims, are
interpreted through another family member, and a significant portion of the
videos serve as educational content about Autism (sample titles include
“Autistic Bedtime Routine,” and “How A Girl With Autism Talks”) without
any input from Abbie beyond her presence. Abbie has yet to communicate for
herself to the camera, and by extension to the audience, which raises the
question of how much leeway has been given to that possibility.
What worries me is that the “educational” messages being disseminated
come from a neurotypical viewpoint that relies heavily on the medical model
to frame Autism as a “condition” that must be “managed.” Autism was
1
An API is what developers use to build apps that mesh with the YouTube platform.
2
A selection from the Fathering Autism affiliates page includes filming equipment favourites,
sensory playthings, and road trip essentials.
Studies in Social Justice, Volume 16, Issue 2, 470-473, 2022
472 Kennedy Laborde Ryan
identified as early as 1911 as a “mode of thinking” rather than a “disorder in
and of itself” (McGuire, 2016). This understanding of Autism is analogous
with ways of thinking that would later give rise to a social model of disability
– one that is only shown in glimpses on the Fathering Autism channel.
Surveillance of Autism is as old as the naming of Autism itself. Indeed
pathologization and surveillance of neurodiverse individuals go hand in hand,
an uncomfortable reality that is compounded by the filming and packaging of
voyeuristic content that relies on the shock value of “deviant” autistic traits
for entertainment purposes. The surveillance of Abbie in the Maas’s home is
near-constant.3 It is unclear whether Abbie has given consent to be filmed; it
seems that her brother Isaiah has, as he participates actively in the videos.
Abbie is non-speaking and communicates differently than the rest of her
family, which means that on the Fathering Autism vlog they are the sole
interpreters of her will and intent. All of her utterances are filtered through
one of her family members, either through signing or a communication app
on her iPad; this leaves a lot to be desired in terms of self-representation.
When YouTube is the family business, the question of what protections are
in place for children whose home has been turned into a workplace emerges.
In the case of Fathering Autism, the family has been transmogrified into a
production team. Each member of the Maas family works to move forward
the entertainment product that their life has become. Household tasks that
would have previously been routine are now the raw material of their videos.
This embellishment of the benign – the performance of authenticity for views
– merits further critical scrutiny, especially when it is purportedly done in the
name of Autism education. Abbie and Isaiah are examples of a much larger
pool of invisible workers: the children of influencers who are labouring in
what I’ve identified through researching this dispatch as a legal and
regulatory blind spot. Being children of media influencers puts them in a
legal grey area. Conventionally, child stars are labelled as performers and
enjoy protections as workers. The California Child Actor’s Bill, known
colloquially as the Coogan Act,4 is designed to protect child performers’
rights as workers, and contains specific guidelines about the amount of
earnings that must be set aside until adulthood, as well as strictly enforceable
rules about how many hours a child can spend on set per day. No such
protections currently exist for the children of influencers, or even influencer
children. The recent decision by YouTube to demonetize content aimed at
children seems to be a step in the wrong direction, due to the massive waves
of backlash that are currently rippling through professional influencer circles,
as well as the ongoing lack of workplace protections for children whose lives
3
Despite my critique I have no reason to suspect any malicious intentions behind Asa Maas’s
vlogging. I believe that like most parents he is acting in good faith and attempting to do the best
by his children.
4
The Coogan Act was passed in 1939 in response to the case of Jackie Coogan, a child actor who
earned millions only to discover that his parents had squandered the money by the time he turned
18.
Studies in Social Justice, Volume 16, Issue 2, 470-473, 2022
Limits of Informed Consent On Disability Family YouTube Channels 473
are being filmed and photographed for audiences of millions. These children
are themselves labourers and the work of producing content is work. These
shifting norms are of course a reflection of wider patterns of precarity – ones
that tear down traditional workplaces and contracts in favour of zero-hour
contracts and “disruption.” This casualization leaves children vulnerable to
the whims of the same algorithms their parents depend on to make money.
Questions are being raised by the platform and people who use it about the
ethics of marketing to kids by kids, but what about the question of how to
protect kids who are being used as tools of marketing?
If the logical conclusion of inclusion is full participation in public life
(ASAN, n.d.), then we must examine how the desire to include people with
disabilities plays out in the digital public sphere. Capturing family life on
camera invites a level of surveillance into the home as thousands, sometimes
millions, of people are made privy to the lives of children as they grow up in
front of a lens. Autism family vlogs like the Maas’ present us with a difficult
question: what are the implications of being someone’s caregiver and also
their producer?
References
Arthurs, J., Drakopoulou, S., & Gandini, A. (2018). Researching YouTube. Convergence: The
International Journal of Research into New Media Technologies, 24(1), 3-15.
ASAN (The Autism Self-Advocacy Network). (n.d.). “The best outcome we’ve had”: Key
themes from a self-advocate summit on community living. https://autisticadvocacy.org/wp-
content/uploads/2019/06/community-living-thematic-analysis.pdf
FatheringAutism - YouTube. (n.d.). YouTube.
https://www.youtube.com/channel/UCZwd0qneWpqUqLnM5nwZpsA
FatheringAutism. (2018, March 7). This is scary... We are going to be full time YouTubers!
https://www.youtube.com/watch?v=WYO2SXNqamI
Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in Autism
Spectrum Disorder? A systematic review and meta-analysis. Journal of the American
Academy of Child & Adolescent Psychiatry, 56(6), 466-474.
McGuire, A. (2016). War on Autism: On the cultural logic of normative violence. University of
Michigan Press.
SocialBlade. (n.d.) FatheringAutism’s YouTube Stats (Summary Profile) - Social Blade Stats.
https://socialblade.com/youtube/user/fatheringautism
Studies in Social Justice, Volume 16, Issue 2, 470-473, 2022
