6 Things I Wish People Knew About Me as an Adult on the Spectrum


I was diagnosed with autism spectrum disorder almost a year ago, and although I have experienced my life this way for 37 years, there is still so much learning for all of us to do. So here are six things to know about me as an adult with autism:

1. High-functioning autism is actually hard work.

I’m on the autism spectrum, but I’m high-functioning and an adult. So people can be less empathetic because it seems like I face less challenges. And most people tend to think I’m old enough to know how to behave so they don’t expect me to have social challenges. But I don’t always answer the phone. Sometimes it takes me too long to respond to messages because I don’t feel like talking. I do my very best at all times, but please remember I face some challenges that I can’t control and will not always meet your expectations.

2. We will almost always see things differently.

Autism makes me see the world much differently than you do. I’m beginning to learn just how different my view of the world is. I’m learning it’s OK to respect that everyone doesn’t see things the way I do, and I’m asking you to respect the fact we will almost always see things differently. No need to try to change my mind. My mind is working just fine. It’s just very different. Every coin has two different sides, but it doesn’t change the value. We may see things differently, but we can still find value in each other’s perspectives if we try.

3. My being so different can be difficult for you.

I understand I’m not always easy to figure out, but more often than not this is a direct result of my psychology, not my personality. I don’t choose to be difficult anymore than you choose to be difficult for me to understand. Autism is not a character flaw; it’s part of how I was created just like my eye color or height. It’s who I am, not just how I act.

4.  I don’t see me the way you see me.

My autism makes it difficult for me to read facial expressions. Growing up, I didn’t learn how to mirror facial expressions and emotions very well. I really only recognize smiles when attached to laughter. That means my facial expressions are often not as distinct as yours. I often don’t know what my face looks like when I am conversing with you. Please know I’m not angry with you or disinterested in what you’re saying. It really helps me to know what you see. You can help me by asking me how I feel, despite how my face looks. Don’t assume anything. Please do me the honor of being honest with me while allowing me to be myself.

5. Ambiguity=anxiety.

The world I live in is extremely black and white. I like deadlines and due dates. I like appointments. I hate being late and don’t like showing up too early. I turn lights off and close doors constantly. I love rules and color inside the lines. All of this is because I don’t do well in unplanned and unstructured environments. Spontaneity scares me. Experiencing sudden changes in plans often feels like turning off the lights in a room, making it pitch black and asking me to navigate my way out of the room. I know my lack of flexibility can drive you crazy, but ambiguity makes me anxious, and it’s usually not good for either of us. I’m working to be more flexible, and perhaps you can learn to help me by being a bit more predictable.

6. I get lonely, too.

Yes, I like to be alone, but that doesn’t mean I like to feel lonely. My need to be alone is in no way a reflection of how I feel about you or about people in general. I love people. I love to hang out with people. I do struggle with being in large groups and can’t do it for long periods of time. Social activity is like sprinting for me. I can do it, but it’s fast and furious, and I can’t do it for long periods of time. Don’t stop inviting me to your gatherings. I would love to be with you, but just know I can only give you what I am capable of handling at the time.

Lamar Hardwick the mighty.2-001

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‘Father of Suicide Prevention’ Dies on World Suicide Prevention Day


Psychologist Norman Farberow, known as one of the founding fathers of modern suicidology and suicide prevention, died on Thursday, Sept. 10 at the age of 97, The Huffington Post reported.

His death coincided with World Suicide Prevention Day.

At a time when suicide was shamed or ignored by society and even psychologists, Farberow called it, “a long-neglected, taboo-encrusted social and personal phenomenon,” according the The Los Angeles Times.

Farberow also co-founded the groundbreaking Didi Hirsch Mental Health Services’ Los Angeles Suicide Prevention Center, and helped investigators determine Marylyn Monroe’s cause of death.

Dr. Farberow changed people’s attitudes toward suicide. He understood that people considering suicide were in terrible pain and how much compassionate listening can help people in distress,” Dr. Kita Curry, President/CEO of Didi Hirsch, said in a statement.

Read the full obituary from The LA Times here.

 

Deputy’s Simple Act of Kindness Towards Man With Disabilities Caught on Camera


A member of the San Bernardino County Sheriff’s Department in California was recently caught in an act of kindness.

A man named Mr. Haston was driving on Bear Valley Road last week when he noticed an officer sitting on a bench beside an elderly man in a wheelchair, according to a post on the San Bernardino County Sheriff’s Department Facebook page. Haston turned his car around to get another look at the scene and witnessed Deputy Sims paying respect to the man by just being with him and later helping him onto the bus.

“The scene led my thoughts to believe the deputy was paying honor and respect to this gentleman, almost as a friend would, perhaps just keeping him company as he waited for the bus to arrive,” Haston wrote in a letter he sent to the watch commander at the Victorville Station. “Thank you sir for the integrity of this man under your supervision. Well done! Thank you Deputy Sims for your service.”

In a world where people with disabilities are too often ignored, it was a simple but beautiful gesture.

The below letter and pictures were sent in to our watch commander at the Victorville Station, we’ll say no more and let…

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h/t Reddit Uplifting

To the Women Unsure About Dating Me Because of My Disability


First, let it be said that this letter is being written not to criticize or patronize, but in the name of honest conversation. I think we can agree that everyone, regardless of gender or disability status, has had many experiences with rejection through the years. In fact, I think there’s a good chance that if we’re using these times as learning experiences, rejection has made us better people. But I’m also guessing it’s true that very few of us find out the real reason a member of the opposite sex doesn’t want to date us, so allow me to get a few things off my chest.

Yes, I am different. I am usually in a wheelchair, so it’s kind of hard to hide. But with maturity comes acceptance, and what I have accepted is this: cerebral palsy is a part of me and always will be, but it’s not who I am. That means my arms and legs might not work like yours, but my brain does. I’m able to think about what I want in a partner, just as you are.

Please try your best not to look at me as someone who needs help, pity or is a great inspiration. I may need help physically from time to time, but if you give me a chance, I know I can help you in different ways when you need it, too. If you find my actions inspiring, thank you, but please understand that’s not what I strive to be. I’m another man out there with goals, dreams and the desire to find someone special.

The process of finding that special someone has been difficult for me at times, as I’m sure it has for you. My heart sings, hurts and sometimes breaks, just like yours. I do not hold it against you if I’m not the one you want to share your life with, but don’t try to legislate or manage my emotions. My emotions are not my disability; they’re my humanity.

I know matters of the heart cannot be decided using reason or logic. I ask only that if you’re going to reject me, do so honestly and preferably not because you can’t take your eyes off of the piece of metal I sit in. I promise to do likewise. I understand the temptation may be there to ponder the challenges of dating someone who uses a wheelchair. But I also pledge that if you’re willing to get to know me and look at my heart, I will put forth my best effort to treat you with respect, care and love.

This may sound like a big commitment, but if we’re truly right for one another, we will do it together. And in the end, does it really matter how some insignificant muscles work if we have mutually captured the biggest one of all?

Sincerely,
Matthew

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? 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.

10 Things I Wish People Understood About Being a Parent With a Disability


Having been born with cerebral palsy, I thought I had a good handle on how the outside world viewed me and how to redirect misguided assumptions about my abilities. That is, until I became a mom at 28. Here are the top 10 things I wish people understood about being a parent with a disability.

1. She’s mine.

It happened more times than I can remember. My daughter and I would be out with one of my gal pals for shopping or lunch. I’d be pushing the stroller loaded with baby gear, and some well-meaning stranger would stop my friend and comment on how gorgeous her little girl was. I wanted to shout, “Over here! Yes, me, the one with telltale signs of sleep deprivation and spit-up on my shirt. I’m her mom!” It was as if they somehow believed my physical limitations would exclude me from having the same maternal desire, ability and right to create life as other women.

2. Everyday tasks sometimes require creativity.

I used a stroller to get my daughter from place to place before she started walking, and I still make sure I’m seated or leaning against a stable surface before I pick her up. I may accomplish some of the day to day responsibilities of motherhood differently than most able-bodied moms, but finding ways to adapt makes it possible for me to care for my daughter independently. 

3. I worry she’ll be treated differently because of my disability.

Let’s face it. Kids can be cruel, and a lack of education and awareness about disabilities often leads adults to perpetuate stereotypes unknowingly. Will other kids make fun of my daughter or exclude her because of my limitations? Will the parents of her peers hesitate to allow their child to accept a sleepover invitation? Growing up can be tough enough. I can only hope that by working to raise awareness now, I can help to eliminate some of the stigma that may impact children like my daughter who were born to a parent with a disability.

4. Don’t assume I’m not capable.

If you see me out with my child and think I need assistance, please don’t just jump in and take over. That only serves to make me feel inferior and teaches my child that Mommy needs to rely on others. Let me have a voice. Simply ask if I would like help. After all, every mom has been overwhelmed and in need of a third hand at some point. Still, if I decline your offer and assure you that I’ve got it under control, respect that and walk away. I know my limits, and I won’t tell you I’m OK if I’m really not. I promise.

5. When I can’t, it breaks my heart.

Like it or not, there are some things my disability prevents me from doing as a parent. For me, it’s mostly things that require a lot of balance without something solid to lean on. Every disabled parent’s limitations are different, but I believe we all share the same heartbreak and frustration when we have to explain to our children why we can’t carry them outside or toss them in the air like Daddy does. If you’re helping a parent with a disability in a moment like this, please don’t make a big deal out of it. Mom or Dad might feel bad enough simply because he or she needed your help in the first place.

6. The things you say affect me.

While you may be trying to compliment me by saying I’m “doing a great job as a mom, considering my disability,” comments like this aren’t actually helpful. Why? Because instead of helping to bolster my confidence, they create a slippery slope of self-doubt and make me question my abilities. Does “considering my disability” mean you still think I could do a better job if I were able-bodied? My disability is a part of who I am, both as a person and a parent, but it doesn’t define me in either role. Don’t get me wrong! We all need to hear we’re rocking this parenting thing once in a while, but if you think I’m doing a great job, just say so, and leave my physical abilities out of it. 

7. I am not an inspiration.

I didn’t beat some incredible odds, find the cure for cancer or ignore my own safety to save hundreds of people from certain demise. I’m simply living my life with the cards I was dealt. Just like every other person on the face of this planet.

8. Milestone moments are extra emotional.

Every parent beams with pride when their child rolls over for the first time or takes those first tentative steps. However, for parents with a physical disability, these moments may also bring with them a sense of relief and a twinge of envy. It’s hard to put into words how surreal it feels to watch your child easily navigate a task that is beyond your physical mastery, like running, jumping or climbing stairs without using a railing.

9. I’m just like every other mom.

I’m constantly juggling too much at once, trying to be a good role model and worrying about whether I’m making the right choices. My limits get tested, tantrums get thrown and there are days I survive on coffee alone. Still, my heart overflows with love. I proudly share when new skills are learned and wouldn’t trade the cuddles or sloppy kisses for the world. 

10. I am blessed.

Becoming a mother is the best thing that has ever happened to me. My daughter has taught me so much and shown me I’m capable of more than I would’ve ever given myself credit for. She is, without a doubt, my life’s biggest blessing. Becoming a mom has also made me more grateful for my disability, because it gives me opportunities every day to teach the value of open-minded acceptance and perseverance that I may not have had without cerebral palsy.

Michelle Keller with her family on a bench outdoors
Photo credit: KPhotography, LLC

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

To the Doctor Who Might Not Understand What’s Wrong With Me


Dear Doctor,

I just wish you and I could maybe talk a little. But since I know you’re busy and probably don’t have time to sit down face-to-face, I want to write you a quick letter instead. I really hope you’ll just take a few moments to read it.

In 2008, I had to have my gallbladder removed. During the surgery, my vagus nerve got nicked, and I’ve been sick ever since. I don’t like being sick. In fact, I hate it. When it happened, I was on the verge of finally finishing up my Bachelor’s degree and had been accepted into a Master’s program that I would never finish. I was working hard, both at a job and at school. I was active at my church, teaching in youth ministry and singing with our praise band. Once I got sick, that all changed.

At first, I tried to keep up my normal life. But after a while, sickness and pain have a way of dragging you down. I tried hard to stay in my Master’s program. I was there for four years on a fellowship, but in the end, I was in the hospital more than I was in class, and it just wasn’t fair – not to my professors, and not to me.

So now I’m a 42-year-old woman who lives with her mother.

I’ve probably come to you because I can’t stop throwing up. That happens a lot. And when I can’t stop throwing up, I can’t get control of the pain. It’s deep, and it’s primal, and it feels like it could tear me apart from the very center. But unless I can’t speak through it, you’ll never hear me call it a “10.” I promise you, if I’d had any other way to deal with this, I would’ve never come here.

I’m sure you see a lot of people in here for a lot of different things. I hear some stories from the nurses that turn my blood cold. And I’ve even been accused of things… I had a doctor ask me one time how many times that day I’d made myself throw up, and no matter how many times I tried to tell her I just couldn’t stop throwing up, she kept asking me that same question. I’ve been accused, in plain language, to my face, of being a drug-seeker. I’ve gone into the emergency room after five straight days of vomiting, with no relief in sight, and been sent away with nothing more than an orally dissolvable Zofran.

I can’t lie. I’ve also had some wonderful experiences with different doctors and nurses. But being treated poorly by your community is by and large the norm for me.

Please know this: I’m not asking you for special treatment. I am not asking to be admitted for a full Dr. House work-up every time I need to come into the emergency room. I don’t expect your eyes to light up every time you see me. Just please see me for me. Please look past the notes on your chart and the 50 other patients you’ve dealt with tonight and talk with me when you come into my room. Please see that I’m on a feeding tube, and that I’ve been hospitalized for pancreatitis, and that I have multiple problems with my biliary and digestive system. Don’t just look at “nausea and pain” on my symptoms list and automatically form an opinion about me.

Even if you don’t understand what’s wrong with me, and there’s no simple answer for why I’m sick now, can you please just reassure me a little? Please help me feel like someone will care for me here. Because I never asked for this. I had plans once. I was like you. I looked forward to a fast-paced career, a social life and a bright future. But life has led me in a different direction and asked me to look in different places for purpose now.

I’m not asking you to be my friend, or my sister or my mom. Just please don’t treat me like the chart in your hand. Help me feel like a person when you’re with me. Like someone who deserves to be healed. That’s all I’ve ever wanted from you, and I’m here with you now because you’re my only hope. Please don’t treat me dismissively and send me home once again, hopeless and sick and in pain.

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.

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