What I Discovered After I Googled ‘Autistic Professor’

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I have a great deal of respect and admiration for Temple Grandin, the author and animal scientist. She’s intense, interesting and has done an unparalleled amount of work to bring an understanding of autism into the mainstream. When a major Hollywood star portrayed her in a biopic, there was little doubt that she’d become the face of high-functioning autism in the U.S.

I value and identify with her remarkable story in many ways.

But it’s only one story.

Like Grandin, I am an autistic professor. And that’s about where our similarities end. I teach literature and creative writing at a small Christian liberal arts college in the rural Midwest. I’ve never been on a ranch, and I’m allergic to most animals.

Instead, I published a book of poems and recently completed a novel. I’m interested in international poetry, big band and early jazz music, the history of baseball and the intersection of art and Christian faith.

While I’ve had some moderate success in my career so far, I’m frankly pretty average. And that’s exactly why I decided to begin telling my story, adding it to the collective understanding of what it means for everyday people who live on the autism spectrum. It’s clear to me that we need to hear from many more diverse voices on the spectrum to begin rounding out the national consciousness of what autism is.

Not long after my diagnosis, I Googled “autistic professor.” I think I was naïvely hoping to find a site where other professors on the spectrum, from a variety of disciplines, were sharing stories and resources and tips for success in our academic settings.

What I discovered is that nine of the 10 results on page one were from or about Temple Grandin. The number one alternate search term that the engine suggested to me was “autism cow lady.” My heart sank a little.

In her wonderful TED talk called “The Danger of a Single Story,” author Chimamanda Ngozi Adichie reminds us that when just one story comes to stand in for many stories, power is concentrated with the few and the many lose out. She says:

How [stories] are told, who tells them, when they’re told, how many stories are told, are really dependent on power.

Power is the ability not just to tell the story of another person, but to make it the definitive story…

The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete.

The consequence of the single story is this: It robs people of dignity.

The last thing anyone on the spectrum needs is a limited — and limiting — range of images in the public’s awareness about what it means to live with autism. While I celebrate anyone on the autism spectrum who has earned notoriety, I also see an urgent need to move beyond a handful of iconic narratives.

So let us continue, here and everywhere, to add our voices, perspectives and unique stories. Let us give one another the gift of our diversity, and in doing so, reveal our shared dignity.

Dan Bowman the mighty.1-001

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When a Woman Responded to My Child’s Meltdown by Saying I ‘Baby’ Her

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I’m a proud mommy to two amazing daughters, a 13-year-old and a 7-year-old. My 7-year-old was diagnosed with sensory processing disorder at 2 and a half and has extreme difficulties with self-regulation and self-soothing.

One day, my daughters and I were at a free clothing organization. My 7-year-old is a “girly girl.” She loves playing dress-up with fancy dresses, makeup and high heels. She saw two pairs of high heels she wanted to take home for dress-up. I told her she could pick one pair and leave the other pair for someone else who may need them. She explained she was having a difficult time choosing which pair she wanted.

While I calmly tried to help her decide, a woman who volunteers there sternly said to her, “You need to put a pair back right now or you can leave both pairs.” Well, that upset my daughter a lot since she was already trying hard to decide which pair to keep. That became too much for her to handle and she started having a complete meltdown. As my daughter screamed at the top of her lungs, “Mommy, Mommy, Mommy…” over and over again repeatedly, I sat on the floor with her. I started to rock her as she sucked on her binkie (which is how I help soothe her during a meltdown).

The woman spoke up again and said, “You need to get her out of here now. I can’t have her in here screaming like that.” I responded calmly by saying, “I am trying to calm her down enough so we can leave since she is too big for me to carry out.” She then told me, “Just get up and start walking out. I guarantee she will follow you.” Well that upset me instantly. How dare a stranger tell me how to respond to my child? How dare she tell me to walk away from my child who needed my help more than anything at that moment? I said, “Actually, no, she won’t follow me. She will scream even louder and continue to cry on the floor. I told you I am doing what I have to do to calm her down enough so she can walk out with me. Thank you.”

She then had the nerve to say to me, “Well that’s why she acts like that, because you baby her and respond to her temper tantrum instead of just walking away.” I was beyond upset now for the way she was talking to me about my daughter. So I said, “She is not throwing a temper tantrum. She is having a meltdown. There’s a huge difference. She has sensory processing disorder and has difficulties with self-regulation and self-soothing.” She promptly apologized by saying, “Oh my gosh. I am so sorry. That’s different.” A minute or two later, I finally got my daughter calmed down enough to walk out with me.

When we talked about the experience later, my 7-year-old said to me that the volunteer had no right to say anything to us, and that she was hurt at what the woman said. My oldest daughter was upset as well. I explained to both of my daughters that I don’t feel the woman said anything with the intention of hurting anyone’s feelings. I also explained that’s why I informed the woman about why my 7-year-old reacted that way. I still remind them (when other people have responded rudely to meltdowns) that people don’t understand why the meltdowns are happening, and it doesn’t make them bad people — just uninformed about certain behaviors.

I was upset because the woman automatically jumped to the conclusion that my daughter was just acting like a “spoiled brat,” but I was more upset and heartbroken that my daughter heard the negative way the woman spoke about her. However, I’m proud of myself for holding it together and informing the woman what was really going on instead of screaming about the way she judged my daughter.

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 “Share Your Story” page for more about our submission guidelines.

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3 Things We Need From Parents as Siblings of Kids With Special Needs

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Today my sister, Zoya, and I watched Polly and Evie, our two little sisters with disabilities, while my mom went out for a haircut. Since it’s summer, we do watch our sisters more often, but we don’t really mind. Usually, we pop in a movie, go outside or just have fun playing Barbies together.

But today, Evie threw a tantrum, which stressed us out and pushed Polly’s attention more out of the way. After Mom came home, we talked about what happened and how everybody was. It warmed my heart when she asked me if I was OK! I wasn’t the one throwing a tantrum or having trouble communicating. But my mom took a minute to check in with me.

Little things like that help remind me that my parents do care about me and don’t forget about their other kids. In light of my experience today and others like it, I came up with a list of three things parents can do to make sure their kids without special needs feel just as important as their siblings with special needs.

1. Take time to do fun stuff.

This may be an “ah-ha” moment or just a good reminder, but it’s very important to take one-on-one time to do things with your child. By planning fun activities to do with your kid, it makes them feel like you care about their happiness and you aren’t forgetting they are in tough boat, too. I understand parents of kids with special needs have a lot of obstacles and struggles, but sometimes the kids who are “typical” share some of those struggles. So plan a day of shopping, see a movie or even just talk! Just make sure it’s one-on-one and something you both want to do.

2. Ask us simple questions that might have slipped your mind otherwise.

I appreciate it when my family is having a hard day and my parents still take the time to ask me how my day at school was. It shows you not only care about big struggles with your kids with special needs, but you also care about your “typical” kid’s homework or what they’re planning to do on the weekend. This is a simple way to show you care.

3. Ask us our opinions on things regarding your kid with special needs.

By asking us our opinions, it makes us feel like we are in the loop and we get to know about things that have been taking up a lot of our parent’s energy and time. We better understand it instead of being outside of it all and feeling neglected. Even if we don’t really get a say, it’s nice to feel like our opinions are being heard.

I hope this helped! Remember that siblings of kids with special needs are usually pretty flexible and understanding. Yes, we all have our moments, but we love our family members with disabilities as much as our parents do, just maybe in a different way.

Elaina Marchenko the mighty.2-001

Follow this journey on GillianMarchenko.com.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

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My Advice to Parents After an Autism Diagnosis

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Parents occasionally write to tell me their child was just diagnosed with autism, and in searching the Web for insights they found my blog. They often express fear and sometimes sorrow, and they ask if I have any advice.

Since this has happened more than a few times, I thought I’d compile some of the thoughts I’ve shared with these parents over the past few years into one list, in no particular order:

1. An autism diagnosis is just a label; nothing about your child has changed. The upside of the diagnosis, on the other hand, is that it allows your child to get critical services and support.

2. It might feel unfair your child was diagnosed with autism at such a young age. But for our family, early intervention was critical — so I believe the earlier, the better.

3. Try not to panic or feel like you have to fix things right away. This is a lifelong journey, and progress will happen over time just as it does for any child.

4. Though some people feel ashamed of their child’s autism, this is one of the most damaging things you can do to yourself and your child. There is no reason to be ashamed: your child has a different neurology, nothing more, nothing less.

5. Although it’s not uncommon to want to find someone to blame, don’t do it. No one is to blame. In particular, don’t blame your partner. You need to support one another now more than ever.

6. Autism is diagnosed by a cluster of similar characteristics, but no two people with autism are alike. Evidence-based therapies involve working on specific challenges, not eradicating autism. Try to move beyond the label and focus on your child’s unique challenges and, more importantly, strengths.

7. Beware of anyone offering a “cure” or “recovery”; there is no scientific basis for any of these so-called remedies, and some of them are downright dangerous. They are offered by people who — as kind, supportive and legitimate as they may seem — are either grossly misinformed or simply want your money.

8. Don’t buy into the myth that people with autism are “locked away” or otherwise disconnected. Outward appearances can be deceptive; if you truly want to get to know your child, you’ll find they’re just as present as any other child. Seek out their interests and make them part of your play routine.

9. Embrace — don’t extinguish — your child’s obsessions. They provide a great way to connect with what interests your child.

10. Presume competence. Your child will amaze you with their abilities if you don’t assume they’re incompetent. In fact, nudge them (with love and patience) — just as you would any child — to do challenging things, things that may push their limits. This is how all people grow regardless of their neurology.

11. Embrace the atypical. We like to say that we value diversity and individuality, but when it comes right down to it, there’s an overwhelming parental urge to make sure your child “fits in.” Over time, you’ll come to understand that fitting in is a lot less important than being happy.

12. Some friends and family will evaporate. There’s no single reason why this happens, but some of the people you think you can rely on most simply won’t be there. Try not to waste your time and energy fretting over it. New, wonderful people will enter your lives, and some of the old ones may eventually get with the program as well.

13. Try to get to know teens and adults who have autism. Read their blogs and books, watch their videos, connect with them in person. They will help you gain insights you cannot possibly imagine now.

14. Parenting will not be what you imagined; it will be harder than you’d hoped. Try to let go of your expectations and live in the present. In time you may come to find great purpose in this experience. I personally cannot imagine my life, or my son, without autism.

Most of all, remember your love and acceptance for your child is what matters most.

Follow this journey on ASD Dad.

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This ‘Frozen’ Star Designed a T-Shirt to Help Prevent Teenage Suicide

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“Frozen” star Kristen Bell designed a T-shirt to show teenagers dealing with depression and suicidal thoughts they’re not alone.

The shirts are selling for $24.99 each, and all proceeds go to the Society for the Prevention of Teen Suicide (SPTS). In less than a week, more than 100 of the 500 total limited-edition shirts have been sold.

SPTS works to reduce the number of youth suicides and attempted suicides by offering training materials and programs for educators, helping them identify risk factors and properly intervene. Its website also has resources and information for parents and teens.

“.@SPTSUSA reduces the # of teen suicides through educational training programs. they’ve trained over 80k teachers to date. bravo,” Bell tweeted.

Bravo to you, Kristen! You can buy her “You Are Not Alone” T-shirt here.

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This Mental Illness Campaign Is Teaching People How to Not Be a D–k

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We all know those friends  — the ones who think they know everything. The ones who will give unwarranted advice, even about topics they know nothing about.

That friend can come off as kind of a jerk sometimes — especially if you’re trying to talk about serious issues like mental illness. A new social media campaign, “Don’t Be A Dick,” encourages college students to be a good friend, not that friend. The campaign, launched Tuesday, calls on everyone to educate themselves about mental illness so you’re prepared if a friend reaches out.

One in five young adults have a diagnosable mental illness, according to the National Alliance on Mental Illness. The Don’t Be a Dick campaign wants to show the four out of five people how they can help.

Created by summer interns at MRY, a creative and technology agency, the campaign includes funny videos featuring different personas and a pledge. The clips depict different friend types, such as the friend who only cares about going out and the friend who relates everything to their own life, and then give advice on how to not be that friend.

But through all the humor, the campaign has a serious message: If a friend approaches you about a mental health problem, there are ways you can help.

If you’re ready, you can take the pledge yourself and pinky swear you’ll be there for the one in five college students who might need your help. To participate, share your pinky swear on social media with the hashtag #DontBeADickPic.

“I’m going to make this promise that next time my friend needs help, I’m going to listen and hopefully be able to help them,” Morgan Klovens, a MRY intern who worked on the project told The Mighty. “It’s a pledge to take mental health more seriously.”

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Via Instagram/n_nystrom
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Via Instagram/rahowar

 

According to Klovens, the ultimate goal of this campaign is to reduce the number of students dropping out of college due to mental illness.

“People aren’t prepared to talk about it and they need to be because it’s becoming a huge issue,” Klovens said. “We should be prepared to help our friends get help.”

See the campaign’s tips below.

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