When It Comes To Autism, Black Lives Matter (2021)

*Featured image contains white lettering in all caps outlined in black on a white background stating: “Black Autistic Lives Matter,” from Jen White Johnson

 A group of renowned advocates and Black and/or PoC led autism organizations have united to express disappointment about a Today Parents article entitled Why there’s a war between parents of children with autism and autistic adults which was initially published (on August 13, 2021) with no identifiable people of color featured or quoted. 

Though several individuals were highlighted in the initial article, all of them were White with the exception of one racially ambiguous self-described person of color, Aviva Seigler (who identified themself as a multiracial activist and entrepreneur and an autistic parent of autistic children, listed in the article by the nickname “Amanda”), who felt mischaracterized and censored by the article. 

Moreover, Seigler, who self describes as “white-passing” and was not identified in the article as a person of color, is doubtful that Today Parents even realized Seigler is a person of color when they initially made contact. Today Parents eventually revised the article the evening of August 16th to also feature one Black family (after receiving complaints). Further, some community members have indicated that Seigler's stated racial identity has varied depending upon context, and therefore might be suspect.

Several organizations, which include The Color of Autism, Thriving on the Spectrum, Autistic Women & Nonbinary Network (AWN), Fidgets and Fries, and Not Your Mama’s Autism podcast, are openly denouncing the exclusion of marginalized individuals when autism is addressed. They are calling for transformative change and greater efforts to ensure that all communities are represented and acknowledged in the greater dialogue surrounding autism and disability.

Camille Proctor is a Black mother of an autistic teen who founded a nonprofit organization, The Color of Autism, in 2009 to offer culturally competent support and resources to the Black community in hopes of empowering Black families with an autistic member and eliminating autism stigma. Upon reading the article, Proctor immediately made contact with the editor for an explanation for the lack of identifiable racial diversity (visibly or by description) in the article.

Both the editor and the author profusely apologized for this egregious omission and updated the article on August 16th with a picture of Proctor and her son. The article revision also included some of Proctor’s stated objections to the article, notably the notion that parents should feel entitled to publicly post personal details about their children’s lives: 

“Your child is going to grow up someday and see this,” Proctor said in reference to autism parents who insist that they are ‘raising awareness’ by posting sensitive information about their children online. “Is it really healthy that you’re letting them know they were a burden to you?”

Rather than viewing this as war, Proctor urges non-autistic parents to strive to be receptive to the feedback shared by autistic adults, even if sometimes it might not be what was expected: 

“Don’t underestimate self-advocates’ level of not only empathy, but also information that they hold to support you on your journey. Yes, sometimes they come off as abrasive — but what you’re seeing is someone who is begging you to do better…if you stick your hand out to them and actually try to talk to them, they’ll stick their hand right back out.”

Morénike Giwa Onaiwu, Equity, Justice, and Representation Consultant for AWN who is also co-editor of the book Sincerely, Your Autistic Child and a newly appointed member of the Interagency Autism Coordinating Council, shared the following statement about the article:

“As a Black autistic parent of autistic and non-autistic children, I feel extremely erased and hurt by this article. Not only does it largely exclude the perspectives of BIPoC autistic adults and/or autism parents as well as those with other marginalized identities, it also fuels a polarizing and narrow narrative that doesn’t sufficiently reflect the realities of many lived experiences concerning autism and parenting.”

The coalition is committed to actions that will help achieve greater racial equity in the autism community. Its leaders, which currently include Giwa Onaiwu and Proctor as well as attorney Lola Olley, technology entrepreneur Tracey Hawkins, and autistic educator Tiffany Hammond, are from marginalized race and disability groups and represent several cultural backgrounds. In addition to their significant lived expertise (all are parents of autistic children and/or autistic adults), are recognized as experienced subject matter experts in disability and race issues.

Tracey Hawkins, mother of two autistic boys and founder of Thriving on the Spectrum, a tech startup company developing digital therapeutic supports tailored to address the needs of autistic individuals, shared the following statement:

“My goal is that all families are seen and voices are heard within the autism community.  I challenge the media to actively seek out self-advocates and families of diverse backgrounds to feature.  A more in-depth story widens the scope and increases the awareness and the ability to tell the greater autism narrative; while also empowering individual communities to be more open and transparent about their journey.  So many families continue to feel invisible because they are looking for places of comfort where they can seek help and resources only to then be excluded on mainstream media platforms.” 

Coalition members noted that the fact that a leading publication that should be well-versed on autism’s appalling racial disparities overtly excluded Black autistic voices speaks volumes. As Tiffany Hammond of Fidget & Fries shared: 

“As a Black Autistic parent raising two Black Autistic children, the lack of diverse voices chosen to be photographed and interviewed for this article was infuriating, heartbreaking, but not surprising. This wasn’t an article about a ‘fractured community.’ How could it be when it openly excluded the voices of so many of its members while promoting the ones we have all seen and heard numerous times before?” 

Hammond goes on to explain, “Autistic people far too often are depicted as a stereotypical young, white boy with a non-autistic white mom. Too often these are the only faces people see, and only stories people hear, and seen as authoritative depictions of autism. The Today Show article followed this pattern, depicting the same white faces and the same white stories that we’ve seen again and again in the media. Stories of Black autistics and Black parents of autistic children are overlooked, silenced, and dismissed. The voices of Black people in the autism advocacy community matter. Our Black lives matter. Because as the most marginalized populations, our bodies, our minds, our energy, and our work is crucial for justice for all autistic people. This article ignored our pain, dismissed our experiences, and left no room for understanding the complexity of our existence by not connecting race with disability.”

Lola Dada-Olley, Creator and Host of the Not Your Mama’s Autism Podcast who is an older sibling to an autistic man in addition to being a mother of autistic children, also emphasized the importance of more complete, nuanced autism-related storytelling:

“Raw, authentic opportunities to share our experiences, whether they be lived through an actually autistic person, a parent or other caring family member, or an ally in the general community, should not be confined to the viewpoints of the few. Part of the reason why I started my podcast was because I wanted people to see a story of a family that sits at the intersections of race, neurodiversity, disability, gender and immigration.  Storytelling in this sphere needs to encompass the full human experience and address intersectionality that includes the full-make up of a person for more balanced advocacy that can lead us one step closer to real structural change.”

Hammond of Fidget & Fries and AWN‘s Giwa Onaiwu shared the following on behalf of the coalition:

“While we appreciate your revision of this article on August 16th to include Camille Proctor so that the faces and voices of families of color were finally made visible, the revision and re-release of this article is too little too late, and we are not placated by this guilt offering. We are tired of our erasure and the pain it causes being an afterthought, an ‘oops,’ where you can hurt us by erasing us and then just ‘erase’ what you have done and paint over it with something new. We can no longer accept this as the status quo, not when there is so much unmet need in our community. We reject the erasure and subjugation of our people and demand better – right now.”

The coalition has issued three recommendations to Today Parents: 

  1. Work toward greater responsibility:
  • Today Parents should publicly apologize for appropriating the term Autism Wars, which is the name of an autism writing project by a Black neurodivergent mom of a multiracial autistic son that has been in existence for over a decade
  • Today Parents should also issue a public apology for this article given the racial erasure as well as the alleged mischaracterization of the article’s intent
  • Today Parents should be more transparent with the revision they put forth on August 16, 2021, in which they simply added Camille Proctor to the article without informing the audience to the specific nature of the edit. 
    • Simply throwing Black voices into an article with which you initially felt it appropriate to include none is not being responsible, nor accountable. Today owes it to their audience to be more open about their revisions instead of trying to sneak edits into their articles. 
    • Today Parents should commit to thinking about what led them to omit the diverse voices of this community and explain to their audience why that was. The conversations that Today Parents had behind closed doors on this matter should be brought to light. 
  • Today Parents should compile and regularly share comprehensive resources on their website and other platforms that are inclusive of the autism community as a whole, including tools that are neutral, tools that are affirming/strength-based, etc.
  • Today Parents should balance the viewpoints of autism contributors as opposed to providing free marketing to the NCSA and its supporters
    • A vastly disproportionate number of the autism parents in this article are affiliated with the NCSA; this presents a skewed image of parental perspectives
    • Despite the article’s implication, it is untrue that it is only “mildly affected autistic adults” who oppose the views they espouse. 
      • There are autism parents whose autistic children have high support needs and autistic adults who have high support needs themselves (and would thus fall into the category of what many in the article describe as “severe” autism) who believe in honoring privacy as well.
      • Moreover, aside from being subjective, imprecise, and potentially stigmatizing, sweeping generalizations such as the functioning labels “mild” and “severe” fail to offer a comprehensive picture of the unique and non-linear nature of being autistic; characteristics that might be perceived as “mild” or “severe” often coexist within one individual
  • Today Parents should incorporate an intergenerational and global lens where autism is concerned as opposed to providing fodder for the binary, false dichotomy of “autism parents” on one side and “autistic adults” on the other. 
    • Not only does that fail to capture the fact that many people are not simply on one “side,” it also ignores the fact that nontraditional families do exist; that siblings exist; that autistic parents exist, etc.
  1. Engage in review of current processes:
  • As aforementioned, Today Parents should commit to thinking about what led them to omit the diverse voices of this community and explain to their audience why that was. The conversations that Today Parents had behind closed doors on this matter should be brought to light.
  • Today Parents should conduct a scoping review/inventory to determine whether or not there is a reasonable percentage of identifiable PoC who are featured in articles in the Today Show’s Parenting section, including articles about autism and disability.
  • Today Parenting should examine how they are representing themselves and their work to determine if they are potentially misleading and/or misrepresenting themselves
  • Today Parents should commit to a social equity inventory and to utilizing an external intersectional review process for articles to ensure marginalized groups are included and are properly depicted; ideally, this should be coordinated by qualified personnel of color.
  1. Work toward restoration:

Please contact Camille Proctor at info@thecolorofautism.org on behalf of our coalition with questions and/or feedback.

*Featured image contains white lettering in all caps outlined in black on a white background stating: “Black Autistic Lives Matter,” from Jen White Johnson: https://jenwhitejohnson.com/Black-Autistic-Lives-Matter-Sticker )

Recommended citation: Giwa Onaiwu, Morénike, Proctor, Camille, Dada-Olley, Lola, Hammond, Tiffany, Hawkins, Tracey. (2021). When It Comes To Autism, Black Lives Matter. Just Being Me...Who Needs "Normalcy," Anyway? [Public statement.]

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