Morénike Giwa Onaiwu

@morenike-giwa-onaiwu | contributor
Morénike Giwa Onaiwu is a mom, community advocate and writer. An autistic woman of color in a multicultural and neuro-atypical family, Morénike is heavily involved in various social justice activism endeavors including HIV-related activism, disability rights, research, gender and racial justice and promoting acceptance, inclusion and neurodiversity. She considers her family, especially her children, to be her greatest accomplishment.

To the Woman Who Wants to Pray Autism Away

I am autistic. I am also rearing children who are autistic — along with non-autistic children who have various disabilities. Our home is swimming in acronyms that stand for all of the different diagnoses in our home. We are quite the “motley crew,” my loud, flapping, spinning, scripting, disabled family and I. And though it’s not always easy (which would be the case with or without disabilities), it’s authentic. We love each other. We strive to respect one another’s strengths, challenges, boundaries, and needs. We mess up at times. But we make it work. In addition to being a family with various disabilities, we are also a large family, an adoptive family, a Christian family and a family of color. We stand out when we go places first because of our size and/or demographics, and secondly because sometimes the way some of us present is a little different than the norm. At times we’ve had negative experiences because of this (like being told to leave movies or plays). But generally the people in our lives are welcoming and supportive. Our church is also a good place of support. Though not perfect, it strives to include people of different backgrounds and experiences and to embrace diversity, including disability. We enjoy attending there and are actively involved in our church. But something happened the other day that I need to address. Recently there was a special performance at our church one evening, and we attended. The children typically attend classes designed for youth, but this was a family-friendly event, so I had the children with me. I was a little worried about one of my children (my youngest son) because the sanctuary uses lighting effects (dimming, etc.), and there is a lot of noise (praise team, live band, bass pumping out of the speakers) and a lot of people. So I was prepared to leave if we needed to. Fortunately, this was a “sensory-seeking” day rather than a “sensory-avoiding” day for him, so not only was he able tolerate the environment that night, it seemed to energize him. The music and the movement enraptured him, and he wriggled out of my lap and climbed to his feet. He moved to a space in the aisle near me, but more in front closer to the stage as if to “feel” the music better. He grinned widely and swayed to the beat. He bounced. He clapped. He spun. My heart burst with joy watching my baby boy become one with the music. I could relate, as there are some things that capture me just as deeply. You see, autistics don’t do anything halfway. We are either all in or we are not in. I can get similarly lost in a book or in my writing or in other things I’m passionate about. When we’re engaged in something, it can be like an all-consuming fire. There is nothing else around us, and nothing else matters at that moment. Watching my child, I knew he was being propelled to move and to express his joy by something from deep inside of himself. I didn’t worry about people staring or pointing or whispering because our church is not like that. If anything, I think I saw a few people smiling broadly at him as they noticed his joy and how he was worshipping freely and boldly. When we left I stopped by the restroom before heading to my car. An elderly lady was in there washing her hands at the sink. I walked past her en route to one of the restroom stalls. She caught my eye and smiled at me, and I returned her smile. The woman, who appeared to be about 80 years old or so, was short and had kind, greenish-gray eyes and a sunburst of freckles across her nose. She then spoke. “Young lady, was that you with that little boy who was jumping around out there?” she asked. “Yes, ma’am,” I answered with a smile. “That’s my son.” “He sure is precious,” she said with an even bigger smile. Then she lowered her tone, moved a little closer to me and inquired, “Is he touched?” “Touched?” I had no idea what she meant. “I don’t understand.” “I was wondering if your son was touched. You know. Special. He seems different. Is he special?” she clarified. “Special.” I didn’t understand “touched,” but I understood “different.” And I definitely understood what she meant by “special.” My smile fell. “Yes, ma’am,” I replied softly. “My son is very special to me. He is a wonderful child. He is autistic.” “Artistic?” Her brow furrowed. “No ma’am. Not artistic. Autistic.” I struggled with how to make her understand, and decided to add, “Some people would say autistic and some would say, ‘He has autism.’ He thinks and acts differently.” “Oh!” she nodded in understanding. “One of my great nephews has autism too. Can’t talk, but smart as a whip. Well, I’ll pray for you, young lady. And your son, too. I’ll be praying.” “Thank you, ma’am,” I replied. “We could always use more prayers.” “I will be sure to pray. Our God is a great Healer. He can heal your son. I’ll pray God continues to give you strength to deal with autism. I know it must be hard. God bless you,” she said. I was at a loss for words. I didn’t want to be rude, but this was going completely wrong. “Ma’am,” I choked out, “I don’t need prayers to deal with autism. I understand autism because I am autistic, too. I don’t need you to pray for my son to be healed.” “Of course not!” she exclaimed. “I am so sorry… You’re right.” Relieved that she understood the offense, I smiled again. “Thank you, ma’am,” I said, and finally entered the stall. As I was pulling the toilet seat covers out from their place on the wall of my stall, I heard the woman speak once more: “Please accept my apology. I will not pray for God to heal your son. I didn’t realize you have the same stronghold. I will instead pray for God to heal both of you. By His stripes you are both healed.” I then heard the bathroom door swish open as she left the restroom. I know the lady meant well. She was trying to be caring. But her words demonstrate a widespread belief and way of thinking that I don’t agree with and think is extremely harmful. It’s something that needs to stop. Please don’t try to pray the autism away. I don’t need to be “healed” of autism. And my children do not need to be either. We are not autistic because of some sin, or some defect or some punishment from God. We are autistic because we just are. This is not an affliction. It’s a way of being. I believe in prayer. I believe in healing. Feel free to pray for us. Just not like that. I believe God made us this way. We are not broken. We need all types of different people in this world. We need all types of minds as well. The world would be boring if we were all neurotypical, or if we were all autistic, or if we were all gifted or any number of things. Just like the world would be boring if we were all white, or all black, or all male or all female, etc. There is beauty in our diversity. There is strength in it. And I believe when God looks upon it, He thinks it is good. Please don’t pray for my or anyone else’s autism to go away. It is a part of who I am, how I believe God made me. I am fearfully and wonderfully made, autism and all. By all means pray for me, but pray for my health, my family, my finances, my spiritual growth, whatever; don’t pray that God takes away what makes me “me.” Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway? The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

'Coming Out' of the Autism Closet

I’ve always been autistic, but I haven’t always known it. I knew I was different from other people, but the difference didn’t have a name I was aware of. It was just the way I was. Some of my differences were pretty cool. Like the way I could easily remember and reproduce much of what I’d seen or heard, the way I could figure things out that stumped other people, how deeply I felt about things and my naturally authentic nature. Other things, though, seemed more challenging for me than other people, like socializing, making myself understood, unpleasant noises and sounds and dealing with sudden changes. I was a living contradiction. I was reading on a college level in early elementary school, but I couldn’t tie my own shoelaces. I could endure intense pain, but the sensation of a tag from a shirt against the back of my neck or water inside my ears generated endless tears. I could converse easily with adults, but I struggled to make sense of my peers’ chatter. And even when I was comfortable with other kids, I couldn’t speak at all sometimes because the words wouldn’t come out right or were too hard to find. I needed my pen and paper to speak for me. My communication, socialization, sensory experiences and speed/manner of processing and responding to everything were so very different than everyone’s (except my mom). For the most part, I didn’t have a problem with myself, but I wish things that seemed so easy for other people weren’t so hard for me. So I guess I did somewhat have a problem with myself, but only in comparison to other people, not from within. Because of that, I had a difficult time accepting myself for years because it seemed that who I was must somehow be wrong. Fortunately, I eventually realized I was exactly the person I was supposed to be. Sadly, it took years. But at least it happened. It still didn’t have a name, but I didn’t know there was a name anyway. Until adulthood, I had scarcely even heard the name of term autism. I had little concept what it was. I recall a daytime soap opera I watched as a child that featured a character who had an autistic daughter. In most episodes, the daughter was hidden away at some expensive “special school.” Shockingly, the girl’s mother was embezzling funds to pay for her daughter’s tuition. According to the storyline, she felt she had no other options. The takeaway message seemed to be that autism was something rare, debilitating, tragic and required costly care. Other than that, I had little exposure to known autistics nor information about autism. It just didn’t come up. Fast forward many years to motherhood, and I am blessed with the most amazing children on the planet, two of whom happen to be on the autism spectrum. It was through their diagnoses, subsequent research and thorough self-evaluation that I began to seek answers about my own neurology. Through them, I first suspected, and later confirmed, that I was autistic, too, but simply hadn’t been aware. It was extremely eye-opening and powerful for me to finally have this insight about myself. Equipped with this new knowledge, everything began make so much sense to me. I only wished I had this awareness when I was much younger. It would have helped me understand how to better operate, learn, handle challenges and socialize. I could have avoided costly mistakes, made different choices and sought strategies to have my needs met in a way that worked for me. I could have had opportunities to stand up for myself. Armed with this knowledge, I’m now able to do those things. But I realized there were many lost opportunities from my past. I knew I could never get those years back. But now I wanted to try to give others what I hadn’t been able to have for myself. I think it’s important to point out I was already a part of the autism community as a parent of autistic children, but I didn’t have to reveal my own diagnosis to others. Because it can seem like the voices of autistic adults are perceived as less relevant than the voices of non-autistic parents/caregivers and because individuals like me can be disregarded by some members of the autism community as “not really autistic,” “not autistic enough” or “not like my child,” it may seem there was little to gain by coming out as autistic. And a lot to lose. But I still wanted to. I was the same person before and after the discovery — except I wasn’t. I was no longer unaware about who I was. All of me. My full, true, perfectly imperfect autistic self. I wanted anyone out there who remotely identified with me in any way — age, gender, ethnicity — to be encouraged by my existence. To know that they were not alone. I wanted autistic kids (like my own and others) to know that it’s OK to grow up to be an autistic adult like myself. I wanted people to know that even though I have real challenges, being autistic has also afforded me many strengths, too. I wanted autistic adults who were diagnosed late to know there was a community filled with people like me who have found one another. I also wanted people from various groups who have been often less represented in autism to hopefully feel a sense of kinship with me. So when I came out as autistic, I did it big. On that fateful day, I participated in a local cross-disability festival, which highlighted various films, images and other content with a focus on disability acceptance. I stood next to a “larger than life” image of myself that was part of a traveling photo exhibit. Next to my image were the following words: “Morénike is an autistic adult who proudly wears the hats of wife, mother, advocate and student. She is passionate about social justice, global health, education, adoption and community empowerment.” I came out as autistic publicly and have never regretted living an authentic life. I’m free to be me. I swung the closet door open that day and stepped out, never to return. Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway?

Man in Barbershop Calls Autistic Boy a 'Sissy'

“Don’t you dare call my autistic son a ‘sissy!’” These are the words I wish I’d uttered on that particular day. It was a sunny, beautiful Saturday afternoon — made even more beautiful by the fact that it was my youngest child’s birthday. Five years old! We had plans for a fun-filled day that was going to be spent doing things he enjoyed, and I was so excited. Maybe more excited than he was! My brother-in-law planned to give the birthday boy a haircut, but I ended up having to take him to a barbershop instead. I was disappointed because he does a great job cutting my son’s hair. His approach is gentle, slow and explanatory, and he’s willing to let my son take breaks if needed. It’s difficult to find people who are similarly accommodating, especially on short notice. So I called the barbershop I use for my older boys, explained the situation, made an appointment to arrive within the hour and hoped for the best. En route to the barbershop I explained to my son what was happening so he could be prepared, and I asked him what I could do to make him feel more at ease when it was his turn. When we got there, I was ushered over to a barber. I said I was the one the owner told him about, and I introduced him to my son. I explained I would sit on the chair and my son would sit in my lap for the duration of the haircut because he wasn’t comfortable sitting on the chair alone. I also explained the following: The apron used to protect clothing from falling hair not be fastened too tightly around my son’s neck. My son requested I sing songs from various Disney Junior shows during the haircut to help keep him calm. My son would need to inspect and “test” the electric razor against his hands before allowing the cutting to begin. Only I was to hold my son’s ears down when we got to the part of the haircut requiring that, not the barber. Throughout the haircut, my son needed the barber to explain what was going on and to pre-announce any changes, like the need to pause and switch to a different razor. If it got to be too much we might need to stop, even if the haircut wan’t “perfect,” just as long as it still looked decent. Regardless of all of these precautions, my son would probably still cry. He listened and told me he was fine with all of that. I said a quick prayer, and then we took our seats and got started. It’s important to me that I always respect my children’s privacy, so I won’t go into specific detail about how my son reacted during the actual haircut. I don’t believe in “live tweeting” or otherwise describing for others the difficult moments my children face and what they might do/say when they’re having a hard time and are not at their best. Let’s just say it wasn’t the best experience of his birthday. Let’s just say it totally sucked. And if not for the fact that he was really overdue for a haircut, I would have preferred that he not even have to go through it. But my son’s reaction is far from the worst part of this story. That would instead be a person who was waiting there to get his own hair cut. I don’t know the name of this male presenting person, and I have never seen him before (and I hope to never see him again). Let’s just call him Mr. Ableist Sexist Jerk, or Mr. ASJ for short. Mr. ASJ took it upon himself to bully a little child. A child who was clearly in agony. A child he did not know and had no right to address in such a way. A child many decades younger than he, and a child with a disability who was not in a position to defend himself. I’ll just give you the highlights of some of the “lovely” comments Mr. ASJ felt the need to hurl at my 5-year-old child. “Hey, you need to stop all that crying. That’s too much crying. Nobody wants to hear all that.” “Are you a little boy? I don’t think so. Maybe you’re a little girl. Because a boy wouldn’t be crying like that. I think you must be a girl, huh?” “Stop acting like a sissy. Only sissies cry for no reason. Haircuts don’t hurt.” I didn’t realize what he was saying nor that he was addressing my child; not at first. My concentration was primarily on my child and trying to keep him comfortable. Then the barber cutting my son’s hair stopped what he was doing, stood up tall and said, “Man, you need to quit hollerin’ at a child like that. This boy isn’t bothering you so you need to leave him alone. He’s a boy with autism so you don’t know if it’s hurting him or not. He’s my customer and you need to show my customer some damn respect in here.” To which Mr. ASJ said, “That boy doesn’t have autism. I heard him talking. He’s just a mama’s boy.” That’s when it dawned on me that the tirade, which I had ignored, had been directed at my baby boy. And that though I hadn’t been paying attention, the barber had heard it all, gotten upset and was speaking up to defend my son. I am generally a nice person. I consider myself pretty tolerant and I give people a “long leash.” But when I get mad, I get mad. There is some truth to the phrase, “Hell hath no fury like that of a woman scorned.” And then to add insult to injury you are messing with my child?! Oh heck no. I could feel the anger rising up in me as I prepared a retort in defense of my child. It was about to be on. And just then my son’s tears, which had subsided for a short while, resumed. Louder and with more fervor. In that moment I abandoned my plan to give Mr. ASJ a piece of my mind and turned my attention back to my son. I began singing to him again and slightly rocking him the way he likes, and telling him I was proud of him, I loved him and that he was doing a great job. I told him we could stop the haircut any time he liked. The barber joined in with me, telling my son, “You’re such a good boy! You look sharp too! Wait till you see your haircut. Almost done now.” I sincerely doubt Mr. ASJ will read this, but in case he does, this is what I wish to say to him: I’m the mother of the autistic little boy you were bullying on Saturday. I want to thank you for being a living example of everything I’m teaching my son not to be. Like the barber told you, my son is autistic. Just because he can “talk” doesn’t mean he isn’t autistic. He has a disability, and he was crying because haircuts are difficult for him. Instead of you being sensitive to him like every other person in the shop was, you made it worse. I’ll have you know that calling my child a “mama’s boy” isn’t the insult you meant it to be. I am his mama, and I’m proud to have my boy’s back all day every day. I’m raising him to be a strong black man. A real man wouldn’t yell at a child. He would comfort him. A real man knows there’s nothing wrong with crying. He knows there’s nothing wrong with being a “little girl” and doesn’t think that calling someone a “girl” is some type of slur. You know what else a real man knows? He knows that to call an autistic boy a sissy is the height of disrespect. It’s rude (and homophobic, for that matter) to call any boy a “sissy.” There’s nothing shameful or wrong with a child expressing their feelings nor with a mother comforting her child. I’m raising my son to know that when he’s hurt or scared, I’m there for him. I’m not ashamed of being that type of parent, and I won’t let you make my son ashamed of it. Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway? Lead photo source: Thinkstock Images