What I Tell My Son on the Spectrum When He Feels Left Out at School

Just be yourself. Every parent has said those words to their child. Just be you, and everyone will love you. For many years of childhood, those words can ring true. Then come the preteen years and our children must wonder what the heck we were talking about. It’s hard to tell a child who stands out that being themselves will work out just fine when they’re living the opposite. My son, Jack, is one of the most unique, insightful, hilarious and creative individuals I have ever met. Those qualities aren’t always appreciated by other 12-year-olds. Throw in the fact he also happens to have some social and learning difficulties, and the tween decks are even more stacked against him.

Mary Hickey.3-001

Jack was born a comedian. When he was an infant, his angelic face drew many an admirer on our errand travels. During one such encounter, an elderly woman gazed into his face, cooing with adoration. He responded by blowing a huge raspberry in her face, scaring her half to death. He then broke out his mischievous grin. To this day, his wit is quick and infectious.

When Jack was a toddler, his inner artist began to blossom. I would find Jackie treasures all over the house and in our yard. My candles would be stacked in an artistic tower. There would be mosaics of sticks and pebbles in the garden. The front doorknob would have a smiley face drawn on it. He would yell in protest as I threw out a piece of trash, and moments later, it would be turned into colorful caterpillar.

And then there are the Jackisms. Many of his simple thoughts on life have grown to become cherished family philosophies.

“People are always moving so fast, and they’re missing all the good stuff.”

“When someone is sad or angry, they just need to be hugged. It’s hard to stay mad when someone is squeezing the yucky stuff out of you.”

“Kind people feel warm like sunshine, don’t they?”

Out in the world, he is not afraid to share his love and wisdom with others. He told a grouchy lady ringing up our groceries, “Are you having a bad day?” She smiled and responded, “I’m sorry, does it look like it?” Jack kindly answered, “A little bit. But that’s OK. Everybody has them. Tomorrow will be better.”

How lucky am I to be this boy’s mother? To share my days with him? It’s hard to stay in a bad mood with your very own ray of sunshine living in your home. It’s hard to be unhappy when you’re joined by someone who finds beauty and inspiration everywhere. I often think about the lucky people who will share their lives with him in the years to come. I also think about the unfortunate people who will miss out on knowing him. He doesn’t always fit in so easily, and so many discount those who are different.

Jack is currently in middle school — right in the thick of conformity. Not long ago, Jack came home in tears after someone on the bus told him, “No one wants to talk to you because you’re weird.” I tried to comfort him as best I could. At the end of our conversation, I kissed his button nose and whispered to him, “He doesn’t know the magic he’s missing.”

To Jack and all the magically different children who are trying to fit in, we need you. You color our world. You will write the songs and stories that will inspire us. You will create beautiful art for us to enjoy. Thank goodness we will have your comedic genius to make us laugh when there is so much to cry about in the world. You will create the things we never knew we needed, but then can’t live without.

Right now, you’re in a time in your life when children are afraid to be different. It seems that fitting in is the most important thing. This time will be hard for you. You are too bright and sparkly to hide. But stay strong and be brave because your time is coming. Don’t let the insecurities of others cause you to hide away your gifts. They are afraid. Afraid to be themselves, and therefore afraid to let others be themselves, too.

Before you know it, the tide will turn. The same kids who were trying to be like everyone else will soon be trying to stand out. That will be your time. Your talents and what makes you unique will be right there, perfectly ripe for the picking. That will be the moment to start manifesting your magnificence.

Earlier tonight as I worked on my laptop in bed, a quiet boy snuck up alongside me and placed a folded paper on my keyboard. He knew I had been through a difficult and emotional day. He kissed my hand and said, “Ta-ta for now!” then somersaulted out of my room. I opened the paper. It was a hand-drawn comic strip featuring a maniacal-looking character who first slips on a banana peel, falls off a cliff, gets pinned under a giant boulder and finally ends up in a hospital bed wearing a giant body cast. Underneath were the words, “Things could always be worse. I love you. Jack.” I chuckled to myself. Aaahh, the magic they’re missing.


10 Things I Needed to Hear Most as a Child on the Autism Spectrum

As a kid on the autism spectrum, I received a lot of pressure to blend in and hide differences. As an adult on the autism spectrum, I now know what the consequences are for that kind of pressure.

When you are young and traits that are part of who you are receive negative reactions from people — especially from parents and teachers — it can quickly erode your sense of confidence and well-being. This, in turn, creates a perfect storm for self-loathing and depression.

Interventions aimed at hiding differences, interventions that establish a goal of blending in — I believe these can potentially devalue individuals and do more harm than good. Therapies and supports can be a necessary aspect of life on the spectrum; I’ve just learned they work best when they are based on respect for a person’s unique personality and way of being.

I think about this a lot when parents ask me, “My child/teen hates their differences and their spectrum diagnosis…how do I help them?” Unfortunately, this is by far the question I receive the most.

With that in mind, here is a list of 10 things I needed to hear most when I was growing up on the spectrum. I don’t know if this can help others think more clearly about who they are and how they relate to the world. I just know that, for me, getting better meant reversing a lot of the feedback I was getting from the rest of the world. (And to be honest, my adult self could have used some of this a little sooner as well.)

Ten things I needed to hear:

1. You will hit social/developmental milestones in your own time, in your own way… and there’s nothing wrong with that. Ignore those who say otherwise.

2. Trying to “fit in” will make you feel miserable. Actually “fitting in” will make you feel worse. You’re different. Go with it.

3. Forcing yourself to hold eye contact will make you feel more alienated, not more connected.

4. Forcing yourself to mimic body language will make you feel more alone, not less alone.

5. Navigating the obstacle course of small talk will always feel mentally exhausting. You’ll begin to feel happier when you learn to politely avoid it.

6. Social awkwardness is your social radar; when people react poorly to it, you know to avoid them. When people are accepting of it, they’re the ones to trust. Your awkwardness: love it, use it.

7. When you feel shame, it means you’ve absorbed the values of the wrong people. When you feel at peace, it means you’re living on your own terms.

8. When you feel resentment for the socially adept, it means you’re trying too hard to be someone you’re not. When you feel acceptance and compassion for the socially adept, it means you’re living on your own terms.

9. Many people do not value difference. What’s important is that the right people value difference. Avoid the former. Surround yourself with the latter.

10. You can’t do it alone. You’ll try…you’ll lose hope that it’s even possible to receive help or feel connected to another person. But the good people are out there. Finding them will be worth the effort.

Follow this journey on Invisible Strings.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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

what to say and not say when i'm having a meltdown

What to Say and Not Say When I'm Having a Meltdown

I don’t experience meltdowns often, but when they do happen, it’s such a heightened state of emotion that the details of how I feel, what triggered it and how to recover fades with every hour after I’m in a relatively calm state. I can’t speak for everyone on the spectrum, but I can tell you how I feel about them, and I hope that in doing this, some of what I say may help someone else, especially parents of autistic kids who don’t have the ability to explain things. I’m 36, and I barely have the insight needed to advocate for what helps me recover from meltdowns.

This afternoon I had a meltdown. It was an epic one that had been building for quite some time. When it hit I was unable to identify it and stop the torrent of emotions from flowing out. What triggered it was not one thing, and with me it almost never is. I had been operating above the level of my capacity for a couple weeks now. School enrollment and appointments have devoured my days. So much paperwork and talking to people. Social engagements, and all the while keeping up with regular household stuff, had me teetering, too. I knew I was teetering, but there was not much I could do.

I used every coping skills available to me, but it was not enough. On top of the demands, a few different people in this small time frame had treated my son, Bubby, poorly. (He is not aware of the rejection, or what was said about him in two of these incidents.) Not only was I beyond sad for my big-hearted son who does not deserve this, but I was/am feeling as if I failed him in some way. This was the last straw. This took my last spoon, and it was all downhill from there. I had a meltdown, passed out from exhaustion and have been recovering for the rest of the night.

When I’m in a meltdown situation, it’s the worst, rawest, most desperate feeling in the world. I’m out of control, and my world is spinning. Sometimes I might cry, but that isn’t often. As a matter of fact, not much emotion ever registers on my face, so there is little for the other people in my presence to clue into other than my behavior.

So, what do (usually) well-intentioned people say when I’m having a meltdown situation?

“Have you tried not caring about _______?” Now this is a fair question. Usually what I’m ranting on about seems out of proportion to my emotion. It seems small to others, but in reality what I’m ranting on about is often not even what I was upset about to begin with, or it was just the last straw that set off the catastrophic firestorm inside of my head. This question feels like an attack to me in the vulnerable state I’m in. It’s really downplaying the very real situation I’m trying desperately to gain control of.

“You need to calm down.” That one is my favorite one to hate. No one likes to be told that when they’re upset, so I really don’t feel like I need to explain why I don’t like hearing this during a meltdown.

And, the last one isn’t so much a phrase, but there’s always someone who feels the need to observe all of the times in which I’m not making sense, or how my behavior (to them) is inappropriate to the situation. They give me the rundown on everything they don’t like about what I’m saying, or how I’m saying it, even though this feels extremely patronizing and is probably the worst thing to do. It’s the adult version of taking away privileges for misbehaving, which I am adamantly against any adult doing to a kid in the middle of a meltdown.

I know sometimes we are rude and difficult during a meltdown. I’m not saying we should just get by with doing whatever we want and saying whatever we want, but please try to understand that a meltdown is a situation likely occurring because we’ve exceeded our limits of coping. Help us get back down to a calm level. We likely don’t want to be nasty. We want to feel better, but we can’t gain control over the situation. We don’t need to be told that we’re not behaving well. We know this. We just can’t stop, and telling us about the consequences or that we’re not being nice is like throwing gas on a fire. I already feel worthless and like my world is ending during a meltdown. I don’t need to be told more negatives.

So, what is a good response, at least for me?

“I see you are upset/hurting. How can I help?” or “I’m sorry you’re feeling so bad. I am here to support you when and if you need it.”

That is it. No criticizing. No arguing with me. And above all, no more demands. Reassure and support. Don’t react and engage.

Follow this journey on Thoughts of an Introverted Matriarch.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

App for People With Autism Has One Thing All the Others Are Missing

A new mobile app could involve people on the spectrum in the development of their own new technologies for autism.

A consortium of British researchers from the University of Bath and the Universities of Southampton and Sussex released ASCmeI.T., which is an app that allows users with autism, as well as family members, teachers, therapists or anyone else involved in the autism community, to share their ideas about what kinds of new technology are needed, according to Modern Design Technology (MDT).

They can upload a one minute video which will be shared with researchers so that new autism technologies can be better matched with the needs of people within the community.

Via iTunes

This project is totally unique and encourages ‘citizen science,’” Dr. Mark Brosnan, co-investigator on the project from the University of Bath, said, according to MDT. “ASCmeI.T. is a simple yet highly effective way to enable people with autism to get their voices heard and to allow the creativity of a previously neglected group to be realized.”

Via iTunes

The app is free and available for download on mobile devices.

h/t MedIndia

The Problem I Have With the ‘Today’ Show Using Autism in This Report

Autism does not equal mass shooter. However, the media often include information in their stories that may lead the general public to make that assumption. Right now the tragic and senseless shooting at Umpqua Community College in Oregon is all over the news, as is the subject of autism. For example, the “Today” show ran a news clip on Oct. 6, 2015 with the description that “Information about the gunman in last week’s mass shooting in Oregon is emerging, indicating that his mother may have had an impact on his fascination with guns.” Then the first part of the piece proceeded to discuss not guns, but autism.

Here is the clip:

The reporter stated: “Startling new revelations about the mother of Chris Harper-Mercer, a shooter who killed nine people at Umpqua Community College last week. For over a decade Laurel Harper, a registered nurse, offered online advice on various medical issues like Asperger’s syndrome, an autism spectrum disorder that she wrote both she and her son struggled with.”

The story also mentioned that Harper wrote of dealing with a “screaming autistic headbanger.” Why was that necessary? Without explanation, it segued into the portion that was actually related to the story’s description: that the mother’s involvement with guns and the way she exposed her son to them may have possibly helped contribute to her son’s obsession with firearms.

So what was the link that viewers were supposed to make between the “new information” about autism within the family, and the new information about their involvement with guns? What was “Today” trying to imply? Why was autism even relevant to a story that seemed to be about the fact that the mother taught her son how to shoot guns?

It seemed to me to be a sensationalistic treatment of autism, not relevant to the story and disrespectful to autistic people in general.

Stories like these can help foster the fear and stigma autistic individuals so often face.

Other sources actually have gone as far as to directly link autism and violence. Earlier this week a Facebook page made direct, incorrect and hurtful statements about autistic people. They stated that a commonality between mass shooters was that they had a “lack of empathy and compassion due to autism.” I will not increase the notoriety of these trolls by stating the name of their page (which has since been removed from Facebook), but I will say that their claims are false. The statement “autistic people lack empathy” is a misleading stereotype. Many actually have an excess of empathy and can find it overwhelming, so they keep it inside. Others may express it in unconventional ways. But to make the overarching statement that they all lack empathy would be grossly unfair to a diverse group of people. Being autistic does not make a person more prone to commit violence.

Years ago, while the world was reeling from what transpired at Sandy Hook, bestselling author John Elder Robison wrote an article for Psychology Today called “Asperger’s, Autism, and Mass Murder.” Speculation had arisen then, as now, that the shooter may have had Asperger’s. Robison is himself autistic (he describes himself using both terms Asperger’s and autistic), and he warned, “Let’s stop the rush to judgment.” He also stated plainly, “Correlation does not imply causation.”

Some may argue that the “Today” show and other similar news sources were not implying that autism makes one more prone to commit violence. Unfortunately, as Robison wrote, when you jointly mention Asperger’s and mass murder, it causes the general population to make assumptions. He writes:

“…because the average person does not know enough about Asperger’s to know it does not turn people into mass murderers. They file that factoid away until the next time they see someone with Asperger’s. Then, instead of giving him a fair shake, they treat him as a potential killer. Everyone loses. As an adult with Asperger’s, who’s seen enough discrimination already, I’m not too happy about that.

So what do we do when we are faced with hurtful statements and misleading stereotypes? Part of me was afraid to write about this, for fear it would cause more people to get the wrong impression of autism. I have a son who is autistic, and the world is increasingly hostile to people like him — people I think are wonderfully unique. People who deserve to be treated with respect. Therefore I cannot keep silent. I will fight to make the world a safer place for people with autism.

I live in fear of how the world may treat my son and others like him. The world is actually more aggressive to autistic people than autistic people are to the world. Robison had similar thoughts, and wrote: “There is nothing in the definition of Asperger’s or autism that would make a person think we are a violent group. That’s reinforced by criminal justice studies telling us that people with autism are much less likely to commit violent crimes than the average person. Indeed, those studies show autistic people are far more likely to be victims of violence than perpetrators. 

“If you’re looking for a group of people to fear, we’re not it.”

I am grateful for the leadership and voice of people like Robison. Yet it upsets me that his words are relevant and necessary yet again. I am distraught that there was yet another mass shooting. I am angry that there are articles and Facebook pages and news reports out there that spread speculation that help contribute to the public’s misunderstanding of autism and also increase stigma.

I would ask media sources like “Today” to practice more responsible journalism. I ask them to be more sensitive to individuals who are already far too often victims of scorn, discrimination and hurtful stereotypes. If they do cover stories of autism in the news, I would ask that they consult with individuals who are actually autistic. I hope they will cover more positive stories related to autism and not just sensationalistic negative ones.

I would also encourage all of you to read Robison’s entire article. He says it so much better than I ever could. Help stop the spread of stigma and misconceptions.

We have so much more work to do to help make the world a better place.

A version of this post first appeared at Seriously Not Boring. Jennifer can also be found on Facebook at the page Seriously Not Boring

Lead photo source: Screenshot from the ‘Today’ show video

Why I Decided to 'Come 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).

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?

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.