The Real Reason You Don’t Think I’m Autistic

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On March 8, 2015, I did one of the most courageous things I’ve ever done. This leap of faith ranks right up there with jumping the broom and having three children. On March 8, 2015, I told the world about my autism diagnosis.

spent the better half of 2014 wrestling with the idea that I may be on the autism spectrum. I’m not exactly sure when my suspicions began, but at age 36, I was almost certain I couldn’t be autistic because I thought I was “just fine” — until I realized my “fine” was actually pretty different from everyone else’s definition of “fine.” That’s when I began to take an honest look in the mirror — not because I didn’t like what I saw, but because I wanted to redefine “fine.”

I’ve lived my entire life pretty much the same way. I’ve never had a ton of friends, but I was fine with that, even when others thought it was strange. I’ve always preferred to be alone, and while I do like hanging out occasionally, I see nothing wrong with sitting at home alone on the weekend. I’m just fine with that. I almost always miss the point of sarcastic jokes and comments, but I’ve never had an issue with that. In fact, I just thought to myself, “It’s not that I don’t get what you’re saying. You’re just not that funny,” and I was fine with that.

Honestly, I’ve known I was a little different ever since I was a teenager. My interests were very limited, I didn’t need or like to be the center of attention and most people thought I barely talked. I was fine with that. It’s just who I am, and everyone who really knew me knew I wasn’t strange, I was just Lamar.

When I did finally get a diagnosis as an adult and I shared my new discovery with the world, most people in my life had a similar response. “We would never know something was wrong with you. You seem just fine.”

I am fine. In fact, I am better than fine. I am Lamar, and my “fine” has always been defined by me. You see, the same reason you don’t think I am autistic is the exact same reason I didn’t think I was autistic. I am fine because I don’t allow labels to limit me. I never have.

Let’s be clear, I am autistic. When I received my diagnosis, I didn’t need a second opinion. I knew it was right. I’ve always had sensory issues; I just didn’t know everyone didn’t hear, see and smell the world the way I did. I’ve always had trouble with facial expressions, body language and social cues. I just expected people to say what they meant. I don’t assume, and I didn’t live in the world of nonverbal communication, and I was fine with that.

The real reason most people don’t think I am autistic is because like me, they have had very little education about what autism actually is. Autism has received a lot of attention in the last decade; however, the harsh reality is that there are still millions of people who don’t know nearly enough about autism, what it is and how it affects people.

I should know; I was one of those people. Until my diagnosis, my understanding of autism was reduced to a stereotype. The vast majority of people lean to one end of the spectrum or another in order to define what autism is. The real reason most people don’t believe I am autistic is simply because I can talk, and because of the fact that I am verbal, I must be fine. I believed the same thing, but what I believed help perpetuate a stereotype about autistic people. The problem with stereotypes is that it silences so many autistic people, and it provides a singular definition of “fine.” Stereotypes allow for one singular expression of what it means to be socially acceptable. Stereotypes create one singular narrative about who people should be and how they should behave. Stereotypes, whether intentional or not, are the reason why I didn’t know I was autistic, and it’s the reason that most people don’t think I am autistic today.

We have a lot of work to do to educate more people about autism. Autism can’t be reduced to how one externally functions in the eyes of society. The ability to talk doesn’t make me any less autistic than those who are nonverbal. On the other hand, the inability to talk doesn’t make other autistic people any less competent or valuable than those who are verbal. Autism is not only found in children. You don’t “outgrow” autism, and autistic children grow up to be autistic adults. Autism is truly a spectrum, and what I have both observed and learned since my diagnosis is that it is much easier to search for labels and stereotypes than it is to search for ways to support the autism community by searching for the significance in each individual human life.

Since being diagnosed, I’ve learned a lot about myself, but even more importantly I have learned a lot about why I knew nothing about myself for so many years. Since being diagnosed, I have been confronted with stereotypes about autism that create the idea that “fine” is defined by one group of people, so my goal is to make that “fine” harder to find. When we educate the world about autism in both children and adults, people who are verbal and nonverbal, we make it much more difficult for the world to subscribe to one idea of “fine,” and in the end, we can aggressively redefine what it means to be “fine,” what it means to be social, what it means to be successful, what it means to be hopeful, what it means to be valuable and most importantly what it means to be human.

Lamar Hardwick

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

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Family Turns Entire Second Story Into Mock Restaurant to Help Son With Autism

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One dad took extraordinary measures to help his son with autism prepare for a successful career.

Michael Stuart retired early from his teaching job in Florida to dedicate himself to helping his 24-year-old son Aaron develop skills that could help him find work in the food service or hospitality industries. And after job placement programs proved unsuccessful, Stuart and his wife converted the entire second story of their house into a mock restaurant to help Aaron train.

Chris Ulmer, a special education teacher from Florida, met up with Stuart to make a video about his mission, and the new organization he’s created out of it, called Operation Meaningful Life. Ulmer posted the video on his Facebook page Special Books By Special Kids, where he often features videos about his own classroom as well as local families of people with special needs.

See the video below:

Operation Meaningful LifeAaron is an adult diagnosed with autism. He is what many refer to as severely autistic.Aaron was struggling to find meaning in life. This resulted in a lingering frustration and episodes of crying. Aaron’s Dad, unable to watch his son struggle, retired early from a teaching job to help him find a purpose.This is their story.

Posted by Special Books by Special Kids on Sunday, February 21, 2016

 

Operation Meaningful Life challenges the perception that people designated “lower functioning” or labeled with “severe” autism are unable to be productive members of society. Stuart has designed an entirely skills-based training program to help bring out the true potential of an individual, according to the Operation Meaningful Life Facebook group.

Ulmer, 26, is the celebrated teacher whose video of the awesome way he starts class each day went viral in November last year. He teaches at Mainspring Academy in Jacksonville, Florida.

After hearing about Stuart’s work, Ulmer realized the family lives only 20 minutes away from him. He went over and spent a few hours observing and filming. He says he often gets emails from people in the special needs community who want to share stories with him, and he plans on turning his Special Books By Special Kids Facebook page into a platform to share these kinds of stories. He will be doing a road trip this spring to travel the U.S. and collect stories from all over to share on the Facebook page.

Check out the Facebook page Special Books by Special Kids, which is updated daily.

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When Everything I Knew About Kids Didn't Prepare Me as a Special Needs Mom

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​I came into this motherhood thing ready. I was in my late 20s, married, had a degree and had started a consulting business so I could work from home with flexibility. I had babysat, worked as a camp counselor, a camp life guard, an after-school program aide, a tutor, a Sunday school teacher, a youth group leader and a volunteer mentor. I once calculated I had worked with more than 1,000 children by the age of 22. I loved kids, that was just a big part of who I was. I had even worked with kids with some disabilities; when I was 14, my first job was a camp counselor for United Cerebral Palsy.

As it turns out, none of that mattered. I was utterly unprepared for what I got myself into. How could my son be so unique from the 1,000 other children I had worked with? With all that experience, surely I must have learned something, right?

Quick, what’s your instinctive response to the following hypothetical scenario? Your 8-year-old with ADHD and autism, who is doing pretty well in life overall lately, is being taken to an after-school activity that is, shall we say, “non-preferred” by a babysitter. On the way, the sitter stops to buy a bottle of water. Child proceeds to scream at the top of his lungs, run around the store, and outruns the sitter and two store employees for 10 minutes until one of the employees threatens to call the police.

I remember when my son was a baby, my late father told me to stop reading parenting books because it was instinctive. Well Dad, I hope you’re looking down because if you have instinctive answers to some of these situations, I’m sure you could find a way to send me a divine message in a bottle. Otherwise, allow me to introduce you to a new brand of parenting. It’s called “Not Very Intuitive Parenting.”

Not Very Intuitive Parenting (NVIP) means that you must intentionally eschew everything you think you know about raising children and leave your instincts at the door. Do you want to know how I handled the above situation? First, I sent him to his room, for the safety of all involved. Then I called the child psychologist to develop the consequence. Then I bought poster board and wrote up a big schedule of his activities to see. I’m currently evaluating social story software in between working full time and dealing with medical appointments for both my child and myself.

NVIP means that I’m not going to succeed at getting my child to hop to with the “mom look.” He doesn’t decode negative facial expressions. Steam could be coming out of my ears, but I need to verbally notify him that I am very angry. I remember it being a fairly obvious rule that you shouldn’t bribe children to get them to do what you want them to do. Many consider incentivizing behaviors as legitimate intervention, however, and it works for us. Applied behavior analysis (ABA) requires you to take data on behaviors like following instructions, potty training, greeting people. Again, this works for us — but none of this is intuitive.

What I want you to know about Not Very Intuitive Parenting is that usually, if you see me practicing it, I want to shout “This isn’t what it looks like!” Yes, there is a reason for why I am hugging and comforting my child who just had what looks like a “bratty tantrum.” Or why when he does something to cause trouble you might just hear me say “one point.” It might look like a dramatic under-reaction, but you don’t know that he is working hard for something and that was a big setback. Usually, if my kid is acting up I’m going to employ specific, strategic responses that have been developed with the assistance of experts and following so many hours of assessments and therapies. It may not look like a reasonable response to you. Trust that I tried it your way at first. No one had better parenting “instincts.” Turns out, I have less use for those native instincts than I expected.

I don’t mean to suggest there is no use at all for a mother’s intuition. I know how high a fever is with a kiss on the forehead. I know when something is wrong. It is the ultimate evolutionary instinct to protect my child above all else. But I also build new instincts. For better or worse, there’s no “because that’s how my parents did it” to fall back on. So, you have to come up with a new way.

My skills in advocating for my son medically and educationally have made me a stronger person. I do trust my instincts over the experts now. But my instincts have been reshaped to incorporate the wisdom of highly educated and experienced specialists whose good advice and guidance have helped him already. It’s been reshaped by online communities of folks in the same boat. It’s been reshaped by trying to keep up with cutting edge research. Now, more often than not, I make decisions based on this specialized body of knowledge rather than instincts. Or at least I do when I’m doing it right and not falling into bad habits and ineffective approaches. So if you too have absolutely no idea what you are doing, it’s OK. It’s not just like riding a bicycle. You adapt and you learn how to best help your child. And that driving love? That is the most intuitive thing in the world.

A version of this post first appeared on Red Queen Mommy.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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17 Things Women on the Spectrum Wish Others Understood

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Autism is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). A lot of theories exist behind the reason for this gender split, including the possibility of autism presenting differently in different genders and even the fact that the diagnostic tests for spectrum disorders may be based on male characteristics.

Whatever the reason for the disparity in diagnosis rates, autistic women deserve to have their voices heard.

The Mighty teamed up with Amaze, a nonprofit organization representing people on the autism spectrum, to ask women what they wish others understood about being a woman with autism.

This is what they had to say:

1. “Autism is not just for boys. So often we’re seen as anxious and shy and so we’re not diagnosed until later in life. Just because we have autism doesn’t mean we can’t do what everyone else can. We are talented individuals who have some awesome abilities and skills, so the world better watch out because we’re coming!” — Ellen Cahill

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2. “I’ll do things at my own and socialize when I feel ready too. People don’t realize how difficult it is when you’re about go into sensory overload.” — Paige Helen

3. “Just because I’ve adapted and have learned how to appear ‘normal’ doesn’t mean I’m not on the spectrum. It’s exhausting checking every move I make and reviewing every word out of my mouth to try to ensure I don’t offend people, and I often get it wrong. I’m not heartless, thoughtless or selfish. I’m autistic and genuinely didn’t know that would upset you.” — Liz Stanley

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4. “Just because I don’t always ‘seem’ like others on the spectrum doesn’t mean I’m not on the spectrum myself.” — Erin Clemens

5. “I am not less than. I am not some overlooked statistic simply because I ‘pass’ well. I am not the same as a man on the spectrum. I am not less than a woman in general, and I am not less than a man overall. I have just as much right to pursue and accomplish my passions and desires as anyone else. And I am definitely capable and driven to make those a reality and to stand on my own in the world. (Already I pick up on and am affected by gender bias of being a woman, which is usually not on equal par with men. And if they know I’m on the spectrum, bias is even more affected on top of my gender).” — Laura Spoerl

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6. “When you get angry with me for my social shortcomings it’s no different than getting angry with someone in a wheelchair for not walking.” –– Shannon Clement

7. “I’m less OK than I’d ever tell you I am, but I’m more OK than you may fear me to be. I am constantly anxious and drained, but I am also capable and tenacious. Given enough time, patience and support, I think I’ll be able to accomplish anything that I set my mind to.” — Paula Gomez

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8. “I want to socialize and spend time with people, but there is so much anxiety and pressure to fit in that it overwhelms me before I’ve even left the house.” — Jill Toler

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9. “I dont mean to check out and let my house fall apart. I’m trying the best I can.” — Tara Pitschner

10. “Telling me you don’t see me as someone with autism isn’t a compliment. It hurts for so many reasons. You obviously don’t know me well enough to see my struggles and what I’ve overcome. As someone who only recently got to the place where I understand and accept who I am, if I choose to open up to you please listen without judgment.” — Casey Malinoski

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11. “Autism defines my brain; it is neurological, and I am not interested in changing it for the world.” — Hallie Ervin

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12. “When I’m getting dressed up to go out and I ask if I look OK, I’m not asking for flattery. I’m asking for help! I want you to rescue me from being stared at, laughed at or being refused entry to that fancy restaurant for wearing an oversized t-shirt, track pants and sneakers.” — Lili Dewsbery

13. “I can be a good mom.” — Lucy Helene Magnus

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14. “When I withdraw, keep my head low and want to be alone, isolated and quiet, it doesn’t mean there is something wrong or that I am upset or I’m being rude. I simply just need to withdraw from the world to re-energize, find focus, slow my very busy brain down and find peace within myself to reset myself. It’s how I work, and it is what works for me.” — Addie Josefine De Nittis

15. “Just because I don’t react in a ‘typical’ way when facing grief or bad news doesn’t mean I’m cold or heartless. It just means I need time to process my feelings.” — Gemma Lyons

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16. “I have friends and really enjoy spending time with them. I do need down time afterwards though.” — Narelle McCaffrey

17. “What you see isn’t all I am.” — Katy Kenah

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Are you a woman on the spectrum? What do you wish others understood about you? Let us know in the comments below.

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Priceline’s Distasteful Adoption Commercial Could Have Been My Son’s Story

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Update — Tues. Feb 23 — Priceline has since responded to this campaign.

I have a son who didn’t behave exactly like his paperwork said he would.

As we were seated on the orphanage couch five years ago, my husband and I sweat from nerves more than from the heat. After a brief pause, the director entered the room with a too-small boy. This boy was trying to burst past his escort into the room, but he was tight in her grip. She held his hand but failed to calm his excitement.

We nervously watched this energetic, lanky boy as he gave each of us a once-over. He grabbed our hands one at a time; it appeared he was kissing them, but now we know he was actually smelling them. He was processing who we were based on our appearances and our smells.

woman holding boy
Ginger and her son.

Moments later, the active child began making his way around the room, ripping our glasses from our faces. He moved like lightning and broke my bracelet before I even knew he was standing next to me.

His adoption file just mentioned he “had social delays.” He wasn’t as his file had described, but nevertheless, he was our son. On the same day he bit my husband’s arm, stole my dad’s hat and almost broke the only pair of glasses I owned, we signed the paperwork to be his parents. We could not bear the thought of what might happen to him if he were never adopted.

He may not have looked or behaved exactly how we expected, but he was still our son.

During the Super Bowl, the weather was warm for this Midwest winter. My husband and I bundled our now three boys and went for a walk. We’re not sports fans in this house, and our TV antenna stopped working last fall. Had we wanted to watch the big event, even for the commercials, we couldn’t have.

Our lanky boy looked more like a man than a child on that brisk Sunday afternoon walk. He has grown and developed over the past five years. He still has many challenges and ongoing issues. He no longer rips glasses from people’s faces, but he does have some difficulty with his preschool-level school work. He doesn’t require someone to hold his hand as we walk, but he is unable to be left on his own.

man holding boy on shoulders
Ginger’s husband and son.

And he still smells every single person he meets. We now know he has autism, Tourette syndrome and a sensory processing disorder.

As we walked with our children — our precious sons — a commercial made its debut on TV. In the commercial, a couple learns they’ve been approved to travel to Eastern Europe to meet their potential adoptive child. They reserve their plane tickets through Priceline, then travel to and from Europe in a matter of seconds.

The viewer is not shown the European child, but the parents express relief that they were able to meet him; they obviously made the choice not to adopt him.

Then, the commercial goes back in time to show the viewer what might have happened if the couple had not gone on that “introductory trip” — if they hadn’t used Priceline’s services. The child they adopted is actually a grown man.

I’m not easily offended. I have thick skin in most instances.

But I’ve seen actual couples come home empty-handed.

I’ve watched as friends walked through their baby nurseries and mourned the loss of children they barely knew.

I know of couples who have made the difficult decision not to adopt because the child’s needs were much more involved than the paperwork had outlined.

I’ve experienced the heartbreak and I’ve cried the tears. While our child was nothing like his paperwork, we still chose to adopt him. Some families have other children or different life circumstances; they don’t have the same opportunity.

Actual children are being left behind in orphanages because their paperwork doesn’t match up with their needs.

This commercial hits too close to home.

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Ginger’s son.

I realize it was made to be funny, but I’m struggling to find the humor.

This could have been my son’s story.

I’d like to ask Priceline to pull this distasteful commercial from their rotation, but I know I am just one voice. My quiet voice won’t change their strategies. My child’s story won’t change their minds.

Maybe if we shout together against Priceline though, those who have been affected by misrepresented paperwork will feel our support as they continue to mourn children they have left behind.

Maybe if we shout together against Priceline, the orphan crisis will return to the forefront of our society’s concerns for a brief moment.

Maybe if we shout together against Priceline, one more family will choose to take the leap into the process of adopting a child. And maybe that family will be able to adopt him despite what his paperwork says.

Maybe if we shout together against Priceline, one more child will gain a family.

Want to join me and shout together against Priceline? Let’s let the company know that we take the orphan crisis seriously. Here’s how:

  • Click here to sign the petition to have the ad removed.
  • Visit Priceline’s Facebook Page and let them know their ad won’t be tolerated by those who love the orphans. Remember to use the hashtag #shouttogether and link this post, asking Priceline to pull the ad.
  • Go to the ad’s YouTube video and give it a “thumbs down.” Leave a comment using the hashtag #shouttogether and link this post, asking Priceline to pull the ad.
  • Adoptive parents, post a photo on Instagram or Twitter of your adopted child. Share the value of their lives, especially now that they have a family. Use the hashtag #shouttogether, link this post, and tag @priceline.
  • Twitter users, tag @priceline and @Darren_Huston (Priceline’s CEO) letting them know you believe the ad should be pulled. Use the hashtag #shouttogether and my post’s shortlink (http://wp.me/p6jLxk-1rn).
  • Click on one of the social media symbols on this page to share this post, using the hashtag #shouttogether. Let your friends and family know about this fight and encourage them to join. The more of us who raise our voices together, the more Priceline will have to take notice.

Alone, I cannot make a difference on behalf of the orphans. With your help though, we can #ShoutTogether until someone takes notice.

A version of this post first appeared on Our Moments Defined. See the original post for more details on how to #ShoutTogether.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Submit a Story page for more about our submission guidelines.

 

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Trader Joe’s Employee’s Moment of Kindness Moves Special Needs Mom to Tears

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One grocery store clerk’s simple act of kindness brought a special needs mom to tears.

Alisen Booth, from Brentwood, California, was at a Trader Joe’s near her home doing some shopping with her 5-year-old son Hank on Wednesday. Hank, who has autism, was having a rough day — Booth had picked him up early from school after he had a fall. Booth was trying to soothe him, look after his little brother and shop all at once. Hank was getting increasingly frustrated.

“Normally, when I’m out shopping, people look at me like, ‘Why isn’t your kid behaving? Why cant you handle your kid?'” Booth told The Mighty. “Nobody seems to think, ‘Maybe this kid is dealing with sensory overload. Maybe theres something else going on.'”

Finally, realizing there was too much going on and it was time to go, Booth got into the checkout line. Hank, still in overload, continued to take items from the shelves and the cart, until the Trader Joe’s cashier leaned down and started talking with him.

Cashier interacting with little boy.
Courtesy of Alisen Booth.

She engaged Hank and taught him how to scan the barcode on groceries, letting him check out his mother’s entire cart. She then gave him and his little brother some stickers as a present. Hank lit up immediately.

“She was very hands on and very caring,” Booth told The Mighty. “No one has ever done that before for us before. She didn’t even ask questions about Hank or his behavior, she just wanted to help. It blew me away.”

Boy and cashier.
Courtesy of Alisen Booth.

The small interaction completely charmed Hank and helped calm him down. Booth, touched by the gesture, snapped some photos, paid for her groceries and then, once in her car, started crying.

Later, she shared the story on Facebook. Someone who saw it put Booth in touch with the cashier, who turned out to have gone to high school with her husband. Booth was able to thank her some more.

Cashier and boy.
Courtesy of Alisen Booth.

Booth says for the rest of the day Hank was proud of himself and excited. He mentioned that he wants to be a Trader Joe’s cashier one day.

“I wish people would be more compassionate not just to people with special needs, but people in general. A smile, a hug, a touch, even a handshake can help anybody’s day. She made him feel like he had a purpose,” Booth told The Mighty. “It made his day, it really did.”

Cashier and boy.
Courtesy of Alisen Booth.
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