Why I Decided to 'Come Out' of the Autism Closet

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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).

Morénike Giwa-Onaiwu.1-001

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?

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What I Learned About IEP Meetings From the Other Side of the Table

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Teaching children with exceptionalities has been my passion, career and life for many years. Little did I know my career and personal life would cross over. The transition from special education teacher to special education stay-at-home mom left me feeling like I was entering the special education world for the first time. 

The world of special needs was completely new to me, even though I kept hearing, “Oh, you are a special education teacher so this isn’t new for you,” or “How wonderful that you have that background as a mom.” The moment my 2-year-old son, Milo, was diagnosed with autism, my mind went blank, and I was truly a newbie.

One day I was sure I would excel at was truly the most eye-opening day for me as an educator. I quickly knew that my education had not prepared me for my son’s first IEP, although this was a day I had said would come easy to me because I had done it so many times before.

With this in mind, there are four things I want teachers to know from the parent perspective:

1. Give us time.

It was always hard for me to understand why parents wouldn’t send in the pre-paperwork on time or even at all. It would take weeks if not months to narrow down a date to meet. 

I knew exactly what that big package was when it arrived. I put it on the counter and put my catalogs over it. If I couldn’t see it, it wasn’t real, right? Opening mail addressed to the Parents of _____________ has been a daily reminder that my now-3-year-old is not typical. We receive mail daily from therapists, case workers, the county education office, the school district, etc. It is at times overwhelming. We have to schedule every meeting with such precision. I have to make sure it fits in with 20-plus hours of therapy a week, make sure my husband has the time off and find a babysitter for my newborn. It is not easy.

2. Walk into the meeting with the parent.

I walked into the meeting and saw 16 case workers, teachers and a variety of behavioral and developmental therapists staring at me. I quickly became overcome with anxiety and emotion, and I instantly felt lost. My knees were weak, my voice shook and I had tears in my eyes. As a teacher, I will always walk into the meeting with the parent.

3. Do not skip “basic info” pages.

We started the meeting by skipping over the first page of my son’s IEP. It had our names, address and basic information on it. As a teacher, I understand why this would not be a page to take much time for, but it was my hardest page to get through. It was the first time I had seen an IEP with my son’s name on it. His name was printed small, the word autism was in bold next to his name. I needed a few minutes to digest it, to understand it, to accept it. While going through the next few pages, it was the only thing I thought about, therefore leaving me in a fog for the majority of the meeting.

4. Don’t judge parents for calling and asking questions afterward.

I left my son’s IEP with such mixed emotions. I was trying to comprehend what had just happened in the past few hours as I was holding back tears and trying to stay focused. I realized I had quickly judged too many parents for calling after the meeting asking questions. I was quick to think, We just went over this. But I was one of those parents who called for many days, with many questions.

I learned I knew all the laws, what boxes needed to be checked and what questions to ask the parents. I had not known how necessary it was to be an emotional supporter to the parent. I learned the little efforts are not so little.

I will walk in with the parents and walk them out. I will never skip over anything, I will follow up, I will call, I will shake hands and I will hug.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] 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

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The 3 Words a Doctor Said That Changed the Life of My Son With Autism

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Dear Doctor,

Last April, you changed not only my son Brock’s life, but my life as well. I was scared to bring my son to your office. Prior to seeing you, no other medical provider took the time to truly listen to my concerns for my son. I was told, “Boys will be boys,” “You’re a first-time mom” and “He’ll outgrow it.” Another provider even laughed in my face while I was in tears and said, “All you parents these days want a label on your child.” But it was never about labeling my son, it was about finding him the help he truly deserved to lead a successful life.

Brock was born healthy at a whopping 8 pounds, 10 ounces. During the first year of his life, he hit milestones ahead of schedule. But around the 18-month mark, he started to regress. After getting a second, third and even a fourth opinion, I was at a standstill.

When it was time for Brock to enter preschool, I decided to homeschool him instead. That’s when I decided to bring Brock to you. For more than four years, I wrote in a journal about the things that worried me: his lack of successful potty training, delayed fine and gross motor skills, always needing a set schedule, obsessive and repetitive behaviors and not maintaining eye contact. Although his vocabulary was advanced for his age, his words didn’t fit with what was being discussed. He would scream as if he were in pain every time his teeth and hair were brushed. And when his normal schedule was disrupted, he would have what I thought at the time were severe panic attacks. It was all very concerning.

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When we walked into your office that day, I wasn’t very hopeful after my past experiences. After being laughed at, I was starting to think that maybe it was me. I thought I was a bad mom, even after reassurances from my family and friends (the people who truly know me) that I wasn’t. When you spend your child’s whole life trying to do everything in your power to get help for him with no results, it does something to a person’s mind. I was in a dark place emotionally.

I’ll never forget when you walked into that room. For whatever reason, I was immediately set at ease. You looked at me like I was a person and not an inconvenient part of your day. You truly listened to all of my concerns as I was once again in tears. I practically begged you to help me help my son. You said the words I was waiting to hear: “I believe you.” That was the most monumental moment of my life. At that moment, all my doubts slipped away. I knew things would become easier for Brock. Because after all, it was all about him. My son needed those three words just as much as I did. Those three words completely changed his life for the better in the 18 months since.

Brock was officially diagnosed with autism and sensory processing disorder. He’s now in the first grade, and in the past year, he has made many strides. A year ago he couldn’t read, and now he’s reading at the same level as his peers. He wrote his name for the first time, and he gets services through the special education department at his school, along with occupational therapy, behavioral therapy and play therapy. I even got him a dog who helps calm him during meltdowns.

I don’t know where he’d be at right now if you didn’t open all of these doors. I don’t even want to think about it. But what I do want to say is thank you. Thank you for treating us like people and for truly listening to my concerns. I’ll forever remember you as the doctor who changed our lives. Because you did. My son deserved to be heard, and you heard him. Even though he faces an abundance of challenges each day, we now know what we can do to help him overcome and cope with them.

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What Goes Through This Mom's Head When You Say 'All Kids Do That'

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My son wouldn’t get out of bed this morning.

All kids do that.

No, what I mean is that he refused to get out of bed and I had to carry him out of his room.

All kids do that.

No, I mean that I had to lock his bedroom door so that he would not get back into bed.

All kids do that.

No, I mean that he threw himself at the door, beating it and ramming his head, shoulders into it. His skin was getting red spots on where he was hitting against the door.

Do all kids do that?

I had to wrap my arms around him and guide him to my rocking chair to try to soothe him.

Do all kids do that?

He was feeling powerful anxiety. He was terrified of going to school because he doesn’t know how to deal with the other human beings there. My son who scores off-the-scale on standardized tests can’t figure out the social rules, and that terrifies him, too.

Do all kids do that?

My son was in pain and trying to get away from what scared him.

My son was in pain and I had no idea how to help him.

Most of the time “all kids do that” is well-meaning, intended to be reassuring that my son is not different, as if different was something to be avoided, something to be saved from.

There are times when it is hurtful, when it has the effect of dismissing my concerns and worries, when it is obvious the listener is the one uncomfortable with “different.”

It becomes clear that I have not communicated well what it is I’m trying to say, either because I can’t find the right words, or I’m reluctant to describe behavior I know that all kids do not do, because I don’t want to see the fearful “different is to be avoided” expression on the listener’s face.

Most of the time I am polite. Most of the time I accept the comment assuming the well-meaning intention and roll on. But in my head I might be having the above conversation.

Maybe irritation flashes across my face — a split second that, if the listener is observant, reveals that in my head I’m shouting, “How the hell do you know?”

Sometimes there are people who don’t say that. They get a look on their face that tells me they understand “My son wouldn’t get out of bed this morning” is code for all the rest of what happened, that my placid comment is really the tip of the iceberg. Maybe they aren’t afraid of “different.”

Or maybe they simply see my own fear and pain that my child is in pain. They don’t try to problem-solve for me or try to give me advice until I ask for it. They listen with kindness and compassion.

When I find those people, it is like a glass of cold water in the desert, fresh air in a stale room, sunshine after a storm. I want to hug them.

Follow this journey on Autism Mom.

Lead photo source: Thinkstock Images

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30 Pieces of Advice for Employers Working With People With Autism

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A 2012 study found that 35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school, according to Reuters. And considering more than 3.5 million Americans live with an autism spectrum disorder, that’s a lot of people with unique perspectives and talents whose contributions to the workforce are being lost.

The Mighty teamed up with Autism Society to ask our readers for one piece of advice they’d offer employers about working with people with autism.

This is what they had to say: 

1. “First you have you give [people with autism] a job, a chance to try. Without that, nothing else matters.” — Teresa Duncan Johnson

Teresa Duncan Johnson says 'first you have to give [people with autism] a job, a chance to try. without that, nothing else matters.'

2. “Don’t assume we’re all the same. No two people with autism are exactly alike.” — Alison Loughlin

3. “Be very clear on your expectations.” — Valerie Glassman Mcguire

4. “Find out what their strengths and weaknesses are and see if you can find tasks for them that compliment their strengths. Also, be compassionate and understanding, it can go a long way.” — Maggie Bee

Maggie Bee says 'be compassionate and understanding, it can go a long way.'

5. “Understand that people with autism have a different way of thinking.” — Brian Mah

6. “Let [people with autism] show you their gifts.” — Pamela Berzas

Pamela Berzas says 'let [people with autism] show you their gifts.'

7. “If [people with autism] ask for time to gather their thoughts, allow it. Encourage it, even. Many meltdowns can be avoided with a few minutes of isolation to reduce sensory overload.” — AutisticalU, Facebook page

8. “Keep in mind it will be different for everybody. The fact that you once met your neighbor’s cousin’s nephew’s friend with autism does not mean you understand autism. Each person is unique.” — Tarina Beatty

9. “Do not underestimate an individual’s ability.” — Laura Burrell

Laura Burrell says 'do not underestimate an individual's ability.'

10. “Presume competence, but also be patient when an employee faces challenges.” — Alicia Kobylecky

11. “[People with autism] see/perceive things differently than most of us. Stop and try to see things how they might. It will boggle your mind to see things in another light.” — Dina Harrison

12. “Don’t judge us, especially if we stim.” — Mandy Rain

Mandy Rain says 'don't judge us.'

13. “Learn everything you can about autism, but don’t forget that we are individuals. Get to know me. What motivates me, what could cause a meltdown, what you can do to help me succeed. Take the time to ask my parents/teacher all about me, they know me best.” — AnneMarie Bill Martin

14. “If verbal instructions don’t seem to be working, try print versions based upon literacy skills. My sons are very bright, but you could tell them all day and they’ll miss part of it. Give it to them in written form, success every time.” — Elaine Bowen

15. “Don’t ever shout out orders. Always be calm. I know my daughter would freak out and shut down if things were too fast-paced and instructions were being thrown at her left and right.” — April Charisse

April Charisse says 'don't ever shout out orders. always be calm.'

16. “Structure and routine will help create the best environment.” — Laura Hershberger

17. “Be very concrete. What you ask for is what you will get.” — Christi Roberts

18. “Same rules should apply to every human. Everything we learned in kindergarten still apples. Kindness, acceptance and patience are required. Also, research please. Some people think when they know one person on the autism spectrum they know them all. Well, each person is unique. Just don’t forget that.” — Migdalia Matos Convery

19. “Acknowledge their humanity above all else.” — Kenyatta Norwood Horne

Kenyatta Norwood Horne says 'acknowledge their humanity above all else.'

 20. Accept [people with autism] for who they are and treat them with respect like everyone else.” — Kayla Locke

21. “Even if [employees with autism] don’t look at you and communicate with you, talk to them. Tell them about your day, tell them you hope they had a good day. Treat them like you would anyone else, even if they may not always be able to respond and communicate back ‘appropriately.’” — Courtney Reitz

22. “Acceptance. Period, the end. No need for further comment.” — Cassandra Budreau-Dunn

23. “Be direct, honest and patient, don’t touch, yell or swear. You will have an amazing employee.” — Christine Joseph-Davies

Christine Joseph-Davies says 'be direct, honest, and patient.'

24. “Understand how sensory overstumulation can be prevented, how to help when someone is overstimulated, and that most people with autism are much better with visual instruction and cues rather than verbal. Know how to communicate best with your employees and how to help them.” — Kathleen McKenna Nelson

25. “Don’t be degrading if we need reminders or if we don’t automatically know something that seems obvious. Our brains may work differently than yours, but we’re still well aware when you’re treating us like we’re lower than you.” — Emma Wozny

Emma Wozny says 'don't be degrading if we need reminders or if we don't automatically know something that seems obvious.'

26. “Change and transition are difficult for me. Give me time.” — Erin McKinney

27. “If all your employees were as dedicated, had such meticulous attention to detail, were as honest and reliable as people with autism, you wouldn’t have any concerns.” — Cheryl Joyce

28. “Keep an open mind and give us a chance. My current boss did, and I’m doing great at my current job!” — Sally Senft

Sally Senft says 'keep an open mind and give us a chance'

29. “Make sure you spend individual time connecting with the person. Earn his/her trust.” — Kera Maxwell Washburn

30. “You might have the best and most loyal worker on your hands when you learn to tap into their strengths.” — Marisa Ulrich

Marisa Ulrich says 'you might have the best and most loyal worker on your hands when you learn to tap into their strengths.'

*Answers have been edited and shortened. 

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