A Q&A with Morénike Giwa Onaiwu

Author photo: Rick Giudotti of Positive Exposure. Cover art: Louis Roe

Most resources available for parents come from psychologists, educators, and doctors, offering parents a narrow and technical approach to autism. Sincerely, Your Autistic Child, edited by Emily Paige Ballou, Sharon DaVanport, and Morénike Giwa Onaiwu, represents an authentic resource for parents written by autistic people themselves. From childhood and education to culture, gender identity, and sexuality, this anthology tackles the everyday joys and challenges of growing up while honestly addressing the emotional needs, sensitivity, and vibrancy of autistic kids, youth, and young adults.

In this blog series, our editorial intern, Evangelyn Beltran, introduces you to each of the editors to talk about the book and about how parents can avoid common mistakes and misconceptions, and make their child feel truly accepted, valued, and celebrated for who they are. To kick off Autism Acceptance Month, we’re starting with Morénike Giwa Onaiwu!

Evangelyn Beltran: How do your identities, being disabled and a woman of color, intersect?

Morénike Giwa Onaiwu: It’s interesting, because it kind of makes me think about certain medications. Some do not have any adverse reaction when taken together. Neither is there a positive reaction. They just coexist simultaneously but aren’t necessarily interrelated in any meaningful way. Another medication might help enhance the efficacy of another—maybe by increasing its metabolism rate or boosting its effect in some other way so they interact in a helpful way. However, when some medications are paired together, it can be dangerous and potentially even fatal. Their combination can result in very serious circumstances, and not in a helpful way. And that’s not because there’s anything inherently “bad” or “wrong” with the medications themselves individually, but together it increases the risk of a suboptimal outcome. That’s kind of how I perceive my identities; they “play” off one another in shifting ways depending upon the circumstances. I wish I could say most of the time it’s more like the second scenario, but I’d be lying.

EB: What was it like being diagnosed as an adult rather than as a child?

MGO: It’s the only way I know, so to me it’s hard to fathom what it’s like to be diagnosed when one is younger. Being that my two youngest children received their autism diagnoses as toddlers, I do have a way to directly compare the way things are for them versus the way things were for me growing up undiagnosed. I think having a better understanding of oneself can be really beneficial for a child (or anyone, but especially for a child), because when you are pondering how you might be different from others and vice versa, you have some insight into not just the “what” but also the “why” of things. You also might have the verbiage to be able to express what you need, what your preferences are, etc. and hopefully people might be accommodating of that. When you don’t have a diagnosis and can’t really articulate a “reason” that makes sense to people, they tend to be a lot less empathetic, although they shouldn’t be. I do wish to say that obtaining the diagnosis for me personally has been very empowering and has helped put much of my life, retrospectively, into context; I don’t know if that would be the case if I’d had the diagnosis younger.

EB: What was your experience as a child, trying to decipher the words, facial expressions, and tones of other kids, all while trying your best to mask?

MGO: Talk about exhausting! Everything felt like work. There’s a saying in the Black community that references how, unfortunately, we often have to overachieve and exceed minimal expectations just to obtain the consideration that more privileged groups receive merely by existing and/or meeting expectations. Essentially, it is said that we have to “work twice as hard to get half.” It sucks, but there’s truth in it. I feel that a different but similar sentiment can be applied to disability as well, at least in my case. There was never such a thing as “just” doing anything. Everything that was practically effortless for many others required a series of agonizing, stress-inducing steps for me to perform them.

For example, the act of starting to get dressed—maybe putting on a pair of socks—is a lot more complicated when you have coordination and movement differences as well as sensory differences; it might take you a lot longer to be able to select a pair that isn’t physically uncomfortable and then to put them on. The act of saying “Hi!” to a neighbor passing by—totally not simple. At what interval exactly do you meet their gaze to acknowledge them? How long do you hold the gaze? Do you stop going toward your destination to greet them or is it okay to greet them while you continue going on your way? Do you smile first before saying hi, or say hi and smile at the same time, or say hi and then smile? Do you smile with teeth or only with closed lips? How long do you hold the smile? Are you expected to add some additional words to the “Hi,” (i.e. small talk) or can you just say hi and leave without being rude? How loud or how soft should your volume be? Should you lilt your tone to indicate enthusiasm, or can you keep your tone normal? Do you also wave, and if so, when exactly? Before you smile but after you speak? After you smile, but while you speak? Is “Hello,” more appropriate than “Hi,” and do you need to include the person’s name if you know what it is (i.e. “Hi, Morgan,”) or is it okay not to? And there’s a lot that I’m leaving out when trying to navigate that “simple” greeting scenario. This is just a sampling.

EB: How do you think parents should prepare their children for the possibility that other kids might be mean to them because of their autism?

MGO: I think that kids need to know, but parents need to introduce the topic in a balanced way that is tailored to the way that particular child comprehends things. It does us a disservice to act like everyone is kind and that the world is some Utopia; when we learn otherwise, it will be hurtful and shocking, and we will have likely unintentionally placed ourselves potentially in harm’s way because of that naïveté. Yet we don’t need to be raised in fear either, looking for the “bogeyman” around every corner and assuming everyone will bully/mistreat/hate us because we’re different. That’s no way to live. I have taken the perspective that I need to prepare my children for ableism in the same way I’ve educated them about and prepared them for racism and sexism: that there’s nothing wrong with who and/or what you are, but some people don’t understand it, fear it, or view it negatively and that can result in mistreatment. That’s their issue, not yours, and you are not to blame for them being ignorant or bigoted. It isn’t appropriate and shouldn’t be tolerated; do not internalize it nor accept blame for being who you are.

EB: At what point in your life did you become comfortable in your identity?

MGO: Truthfully, I think, in a sense, I’m still working on that. It’s a continuous process for me! However, I feel that I have been on a constantly evolving quest to understand and accept me for me for a number of years. It’s almost like a physical journey; me gradually accepting one aspect of my identity (i.e. gender, personality characteristics, race, ethnicity, sexuality, etc.) is like me traveling over time to Point A, then eventually, over time, successfully making it to Point B and so on.

EB: In what ways have your autistic traits helped you in life?

MGO: I feel that in many ways they’ve helped me be my true and real self. I don’t have this curated, ultra-Photoshopped filter draped across my life. I am my authentic self, strengths and weaknesses. I feel that it has helped me to be more inclusive of others and has helped me to survive some ultra-painful and craptastic experiences in my life. In many ways, my autistic traits have probably saved my life.

EB: Have your identity and experiences influenced your career choices at all?

MGO: Absolutely. There’s a phrase I love from a fellow autistic colleague, Kassiane Asasumasu (the originator of the term “neurodivergent”), which describes autism as “deep love” and notes how we’re all about “going big or going home.” This resonates with me so much because we’re not “in between the lines” people. We’re on the lines or out of the lines. I personally do not have the capacity to effectively “do” an exceptional job consistently over a lengthy period of time on tasks that I dislike. It’s just not how I work. When I’m leaning into my abilities and my interests, however, I’m phenomenal and I shine. So, for me, knowing my strengths, knowing what I’m NOT good at and/or what I need support with is crucial. I could never work in a field that required certain tasks such as lengthy, extensive “networking with potential clients, or having to “people” a full day around the clock with no breaks to regroup, or with rigid time frames. I thrive in an environment where there is flexibility, where I can express some creativity in my approach to managing my responsibilities and/or solving problems, also and where I can have a level of autonomy while also knowing precisely what is expected of me by whom, when, why it is needed, and how to deliver it.

EB: What do you think should be done about the lack of representation of female and BIPOC autistic people?

MGO: I saved this question for last because it’s a downer for me, for I (and other gender and racial minorities) get asked this question quite frequently, and although it’s a sensitive topic, we try to respond earnestly with practical recommendations—all of which typically get ignored in terms of implementation. We explain the critical need to include and amplify us in a respectful, non-tokenizing manner; we suggest BIPOC women, nonbinary, and trans individuals as well as books and organizations; we seek opportunities for meaningful leadership and involvement; we empty out our hearts . . . and it’s typically in vain.

At this point, I think that “mainstream” autism—and disability, for that matter—aren’t really invested in having better representation of us, because clearly, they don’t think it’s worth the effort, time, or resources. All the inequities that already exist in society at large regarding race and gender are present within the autism community as well, and I would even propose that they’re magnified. If people struggle to comprehend that autism is not the Peter Pan of developmental disability (existing in some form of perpetual childhood) and that autistic children grow up and become teens and then adults, it’s doubtful that they will be able to see that it’s a spectrum in terms of race and gender. If they can’t/won’t see (white) autistic adults, it’s almost laughable to believe they’ll see someone like me. Nor do they want to. BIPOC Autistics and Autistic gender minorities aren’t at the table; we haven’t been invited, and I don’t know when/if we ever will be.

So, while I can humor you and myself by telling you what SHOULD be done to increase our representation, instead, I will tell you what WILL be done: my people will continue, as the great Shirley Chisholm advised, to “bring a folding chair” to that table, regardless of our lack of invitation. Because it’s our table, too, and we belong there, and we’re not going to perish waiting in vain for an invitation that may never ever come.

About Morénike Giwa Onaiwu

Morénike Giwa Onaiwu, MA, is a global self-advocate, educator, parent and disabled person of color in a neurodiverse, multicultural, serodifferent family. A prolific writer, public speaker, and social scientist/activist whose work focuses on meaningful community involvement, human rights, justice, and inclusion, Morénike is a Humanities Scholar at Rice University’s Center for the Study of Women, Gender, and Sexuality and a member of several executive boards. Publications include: Knowing Why: Adult-Diagnosed Autistic People on Life and Autism, All the Weight of Our Dreams: On Living Racialized Autism, and various peer-reviewed articles. Learn more at: morenikeGO.com.