January 2nd, 2019
Correction: A quote from an article by Julia Bascom was originally misatributed to nonsensewakesupthebraincellz, the Tumblr user who quoted it.
Tumblr, the quirky, controversial, notoriously unprofitable social media platform, may finally disappear. Verizon’s decision to clear the site of adult content has gone over badly with users, in part because Tumblr has always housed significant amounts of adult content, in part because haphazard enforcement of the new rule has affected SFW blogs. A significant number of users have already decided to leave. It is possible, though by no means certain, that Tumblr could survive without people who use Tumblr as a source of adult content, but many believe the departure of fandoms is a fatal blow to the social network. Users are backing up their content and gathering other contact information for their friends, even if they intend to maintain their accounts if possible, because of widespread predictions of Tumblr’s demise.
Since Verizon announced the new rule, people who have used, loved, and hated Tumblr have been eulogizing it. In the commentary on the social network, its past, and its likely-limited future, autism comes up as a theme among critics and mourners alike. Some of the tweets are by people who have identified themselves as Autistic:
Others are ableist and undignified uses of autism as an insult:
The association of Tumblr and Autistic people is not just a matter of coincidence or insult. For years, Tumblr has been home to a large, robust Autistic community which has played a significant role in the Neurodiversity Movement. Now, its is in doubt. Some very notable participants have already announced their departure.
This community, known as Autistic Tumblr, is not the oldest online gathering place for Autistic people, but it is distinguished in its diversity, accessible entry-point to the community, organically pro-neurodiversity posture, and success as a starting point for younger Millennial activists. Whether or not it continues to exist, what happened there will ripple through, at least, the English-speaking Autistic community for years to come.
Autistic Tumblr became a small but discernible community in the very early 2010s. It started on tags like #aspergers and #autism. The population might well have fit in a high school classroom without feeling too cramped. Tumblr, then a growing social network drew in new members rapidly. Most were in their teens or twenties. Some happened to be Autistic.
Autistic Tumblr happened organically. The social network’s flexible format may have helped the fledgling group grow and align with the Neurodiversity Movement. Tumblr facilitated content ranging from long, serious essays on disability rights, disability justice, and current events to memes.
If Tumblr had materialized at a different moment in Autistic history, it might have retained a lighthearted character. However, it became popular around the time of the infamous Ransom Note Campaign, just as the Neurodiversity Movement reached full strength. At that time, there were two major narratives of autism and what its future should be. One, which could be termed a cure or eugenics narrative, favored the eradication of autism. The other, holding that autism is a natural part of human diversity to be accepted and accommodated, could be called the neurodiversity paradigm. These competing ideas were locked in an existential conflict. In the late 2000s-early 2010s, this struggle that was playing out in shouting matches, boycotts, social media shaming, strained or severed family ties, protests, fundraising, and innumerable other public and private conversations. People in Autistic Tumblr were aware of that dispute. Tumblr, conducive to text posts, was a natural location for in-depth discussion of issues that concerned Autistic people there at the time.
Autistic Tumblr’s population had the same consensus about the conflicting narratives of autism as the wider Autistic community. The neurodiversity paradigm was widely favored, and the idea of a future without Autistic people was viewed with horror. In the face of a highly-visible, well-funded, widely supported movement to wipe out autism, the Autistic adults who opposed it took one of two basic postures. Some despaired. Others were outraged. Ultimately, outrage won out in Autistic Tumblr, partly because there was little to be lost in trying, partly through inspiration from the wider Neurodiversity Movement and other groups advocating for social justice on Tumblr. Harassment may also have been a contributing factor in the politicization of Autistic Tumblr.
While adherents to each narrative of autism grappled over whether Autistic people ought to exist, it was difficult for any activity among Autistic adults to be merely social. Autistic youth and adults spending time together of their own accord, without neurotypical leadership, enjoying each other, sharing advice, and celebrating common experience challenged the idea that an Autistic life is inherently substandard, isolated, and devoid of agency. Tumblr users who subscribed to the cure narrative stumbled across Autistic Tumblr through tags like #autism and #aspergers. Often, they reacted to what they found by trying to shout it out of existence. The problem was so pervasive that the community discussed abandoning #autism, and possibly Tumblr, itself, in November of 2011. These problems were solved through #actuallyautistic and its variants.*
Strangers who badgered community members did not win many converts to their perspective. If anything, this behavior moved people who were despairing or undecided into the outraged camp. People who might never have taken up activism became angry enough to do so.
With most people in agreement on the broad outlines of which narrative of autism to adopt, debate shifted to finer points of terminology and ideology. Tumblr has been one of the more welcoming social networks for marginalized people, so Autistic people of varied backgrounds and perspectives weighed in. The discourse was varied and rich. Some of the most interesting topics were what success should look like for the Neurodiversity Movement, Autistics’ obligation to each other, and whether Autistic people had a moral obligation to engage in any kind of advocacy.
A number of younger millennial activists first engaged with the ideas of disability rights and disability justice in this fertile environment. Autistic Tumblr in the early 2011s was a place where young people could make important connections, and, more importantly, discover their capacity to lead. A number of people who have since taken on professional roles in disability advocacy would have been recognized as among the more prominent voices in the Autistic Tumblr of 2011–2015. As its members tried to learn more about others’ work on disability issues, Autistic Tumblr became increasingly aware of and engaged with the global disability rights and disability justice community.
Members of the community also began to look for ways to support the Neurodiversity Movement.
This took the form of writing, real-world public speaking, videos, participation in boycotts, campus advocacy, providing advice and support to newer community-members and their neurotypical loved ones, and trying to deter donations to disfavored organizations, either through conversations with individual donors or the carefully-coordinated social media shaming of large, corporate donors.
In the early- to mid-2010s, many efforts to reduce funding for eugenics were planned in Autistic Tumblr and carried out on other social media platforms or offline. Outreach to young Autistic people and to parents open to the neurodiversity paradigm also took place. Autistic Tumblr was a seemingly bottomless pool of volunteers for the work of Neurodiversity.
In 2014, the collective efforts of the Neurodiversity Movement paid off in events that were extraordinarily visible to ordinary Autistics in late 2013. Autism Speaks published a letter written by one of its founders describing autism in hyperbolic terms which were widely considered offensive.** A large contingent of parents, mostly mothers, joined Autistic adults in denouncing the letter, demanding less damaging rhetoric around autism, and, in many cases, rejecting the organization as too ableist to be salvageable. Describing autism as an utterly wretched, hopeless situation was no longer an effective way to appeal to large numbers of neurotypical parents of Autistic people. Autistics who identified with the Neurodiversity Movement were overjoyed, and those who contributed their time, money, or effort to the cause, however much or little, felt very much a part of the victory. Autistic Tumblr was particularly ecstatic.
These events re-energized seasoned activists and engaged newcomers. Autistic Tumblr supplied a significant number of people to efforts like Boycott Autism Speaks and an effort to punish Google for participating in cure research in the months that followed.
Although its contributions to Autistic culture and advocacy were substantial, Autistic Tumblr was flawed. The wider Autistic community will suffer from its failings for years to come. The same intense debate and unyielding spirit that pushed a community where many of the earliest users believed autism’s demise was inevitable to the front lines of the Neurodiversity Movement could be harsh and unforgiving. Too many of the activists who had effectively weaponized social media for community defense readily turned it on each other over slight ideological differences or even personal disputes. Many thoughtful, committed people were driven out of Autistic Tumblr in this way, and many more were so disgusted with such events that they left even though they were not directly targeted. Some remained in other parts of the Autistic community. Others left altogether.
Autistic Tumblr only reached its present size because it grew fast enough to overcome constant attrition.
This dynamic was not unique to Autistic Tumblr. Indeed, it has plagued almost every Autistic space on the internet and many offline. However, the problem was unusually pronounced in Autistic Tumblr. Members of the community with large followings could get people who offended them shunned by large segments of the community or forced out altogether. A shameful number were quick to do so. The people who left represent a loss of omission, real but indeterminate in scope. What they might have said and done, what roles they might have grown into, and how many would have made an effort to mentor younger Autistics or raise their own children in the Autistic community is unknowable. This hole in what might have been is probably impossible to repair. Although a number of people spoke out about this concern, Autistic Tumblr did not reach an effective solution during its most productive years. Tumblr’s creative and destructive tendencies seemed like two sides of the same coin. Both finally diminished as Autism Speaks and the cure or eugenic narrative of autism weakened and the sense of a looming, existential threat diminished.
In 2014–2015, Autistic Tumblr began to change again. over time, it became more social and less political.*** The contents of the typical post moved away from advocacy and toward camaraderie or advice.
Whether this will continue through and after 2019 is unclear. That depends on whether the amount of user base Tumblr has alienated is survivable. Whatever Verizon has planned for Tumblr could shrink, shift the demographics of, or even expand Autistic Tumblr. By now, most community members have considered, if not selected, a new internet home base. Some had already established other places to store and publish their work, ameliorating concerns about the whims of Tumblr moderators and Verizon shareholders. Others backed up their blogs in response to Tumblr’s recent troubles. However, these efforts are highly individual. If Tumblr’s servers go dark, it is likely that some content that was significant to the Neurodiversity Movement will disappear. If Autistic Tumblr has a final lesson for the Autistic Community, it may be the importance of preservation. All of the Autistic history that transpired on the internet, especially everything that only exists on social media, is vulnerable to the internet’s ephemeral nature. What is not deliberately preserved will be lost.