World Autism Day

For world Autism month I intend to do two things: love my neurodiverse friends and family as I always have by celebrating their being, and living in a way that’s congruent to the mission of ending ableism. For me, these are the only two clear, meaningful actions to take during this time. What I won’t do is ignore the voices of autistic individuals and support the campaign of an entity which continuously causes harm while gaining profit at the expense of autistic adults and children.

‘Light It Up Blue’ is the Autism Speaks campaign plastered across the world each year on April 2nd in supposed support of Autism awareness. The universal puzzle piece will be cast alongside the blue shirts, ribbons, and Facebook profile frames littered throughout cyberspace. But have any of us asked ourselves what all of this awareness is actually doing? Where all of this support and donations are actually going? By now, almost everyone is aware of autism, so what’s the deal? Personally, I will not be lighting it up blue or repping the multicolored puzzle piece this year after listening closely to autistic voices about the harm that Autism Speaks creates for autistic individuals and their families.

Autism Speaks is one of, if not the largest, autism-support organizations in the world. Yet almost none of their budget is allocated toward actually helping autistic people and their families. In 2018, 48% went to marketing campaigns for awareness and lobbying while just 1% went back to families in need of services.The numbers continue to worsen: 4% is spent on miscellaneous expenses, 27% on research, and 20% on fundraising. Only one person of 28 is actually autistic on its board of directors. They’ve worked their way into awareness (and our bank accounts) well, but are they really that philanthropic when less than one percent of their revenue goes toward helping autistic families?

Autism Speaks is also notorious for using language that promotes stigma and fear. Not to mention the fact that eugenics used to be a part of their primary mission in helping autistics. No one should consider this or any other entity that operates with such disdain for a group of people an equitable, charitable venture.

Another issue commonly seen with most social justice or advocacy movements is performative activism. Performative activism is nothing new, but is a newer term to coin what is frequently done in these days of social media. Everyone sees someone ‘supporting’ a cause, getting likes and shares, and creating a massive ego stroke for everyone involved. Other people then share the post or create their own to prove to the world (or themselves) what a good person they are, not realizing that they’re participating in a networking opportunity to further their own social capital instead of supporting what should be a celebration of life for a specific group of people.

One misconception about activism is that supporting a cause is mainly about awareness. Awareness without understanding can have catastrophic consequences, such as the affected group getting railroaded because the socially cultivated awareness shifts to the performative activism itself rather than to the people which are in real need. To truly support a cause, one must dedicate time to understanding it and its people. To fully support a cause, one must live in a way that is in alignment with the needs of the people at the center of the issue. Activism is a lifestyle, not a social media post. In order to really help, above all else, first we must listen.

In autism circles, most autistics would say that their autism diagnosis or the way their brain works (and essentially part of who they are) isn’t the real issue; rather, the way in which society functions around and treats autistics is the primary issue needing dire resolution. Changing the expectation from awareness to acceptance is a better approach, but why is there a need for acceptance in the first place? Are we not all human, worthy of equanimity, belonging, and decency? Isn’t it reasonable to create a society based in equal rights and accessibility? Aren’t all humans worthy and deserving of love, compassion, and having their basic human needs met? Awareness, acceptance, and eugenics are simply not answers to the crisis of ableism.

I don’t have all the answers. I’m also not autistic. By no means am I an expert, so I won’t leave you with much advice on how to further your journey to becoming an ally, but tomorrow on world autism day I’ll be sure to let my autistic loved ones know how delightful, wonderful, and incredible they are, celebrating them in all of their atypical glory. I will love them as they are, and not as a societal expectation of how they should be. Send your neurodiverse friends and family food and laughs and maybe a little money to help them get through the rough patches, because life is tough. And simply because they are enough.