It was just another hot, exhausting summer day in Indiana. For the most part, our days are the same. My two sons have autism, and we find ourselves living a daily routine. I picked up the boys as usual from their full day of applied behavior analysis (ABA). Once we arrived home, it all started.

My 5-year-old is nonverbal and requires regular care. I was in my second month of potty training him, and I was starting to feel like a failure. Amidst this, I have my 4-year-old son with autism who wants my undivided attention to play superheroes with him. On one particular evening, I was running on fumes. My non-sleeper had spent the last two nights up. I was sleep-deprived and needed a boost to keep going.

Lo and behold, I got want I needed that night. I felt tears coming to my eyes. I held them in, but there was no doubt I felt like a complete failure as a mother at that point. I didn’t think anything could help, until I found the note!

note on a napkin
Note on a napkin that reads: “Have a great evening! You’re a Supermom!”

I stepped into the kitchen to go through their book bags from the day. One of my son’s coaches left me a note in his book bag. To this day, I have no idea which one did it, but it was what I needed that night!

At that moment, I let the tears flow from my eyes. Someone knew and appreciated what I was going through and took time out of their day to write a few words on a napkin. That is all it took for me to get my boost and feel re-energized.

This is my journey, and I take great pride in it. I would be lying if I said I never got tired, because I do. It gets mentally and physically exhausting. However, on this particular day, in the snap of a finger, I felt like I was on top of the world. And it was all from one simple napkin.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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.

RELATED VIDEOS


Much has been written on the subject of autism and bullying. My son hadn’t been bullied before. I created a safety net around my son, making a point of knowing his surroundings and all the parents in his classroom, overlooking and monitoring his therapists, having daily contact with his teachers and surrounding his weekends with family and friends I felt confident would accept him as he is — a person, a human being, a child with feelings and emotions. But it happened one day. My son was bullied. It’s a date I will never forget.

Our Friday nights consist of going to the movies, regardless if we are on vacation. It was a routine night out. French fries with cheese curd, no gravy, a slice of cheese pizza and water. The movie: “Alvin and the Chipmunks.” It was a great night, the movie was funny, my son was engaged and I was enjoying my mother/son bonding time. But after the movie, my son experienced an act of bullying that left him traumatized and visibly upset.

What mother doesn’t hurt when her child is upset? What mother doesn’t feel the pain when someone else deliberately hurts your child? Why? That is the definition of bullying: there is never a real answer, and if there is, it never makes sense. The person who bullied him didn’t care about his feelings.

Calmly, I approached the manager of the movie theater, a soft-spoken, pleasant gentleman. I explained what happened. Immediately he took us to sit down in the room where birthday parties are held, a special room with posters and colored chairs a room that gave my son space to himself to calm down and be distracted by all the sensory stimuli the room had to offer. I welcomed the gesture. He patiently listened to the course of events, offered me some recourse and apologized for an incident that was not his fault except for the fact that it happened at his place of work. After writing down the incident, I decided without adequate description from my son, not much could be done. It does not always take much to help someone; offering compassion, lending an ear and being thoughtful is many times more than enough.

The gentleman watched as he tried to calm and district himself, and he offered words of comfort to us. He read my complaint and saw we attended the movies every week. Although I was satisfied with his actions up to now, he went above and beyond. He gave my son a poster and movie tickets to attend next week’s show. Even without the movie tickets, we would have returned to the movie theater because it is our weekly routine. But the gesture of kindness means more to the heart than one can explain in words.

We left the theater happy — my son holding his poster and me contemplating the events, grateful to the manager for his support and thinking of all the good people in the world. But there can be people who are not so patient, understanding and can even be downright mean. When I reached the driveway to my house, I will not lie, I broke down in tears.

I have to remember for every person who is not so nice, there are more people who are nice, compassionate and loving. Thank you to the movie theater manager for being the kind of person who makes me believe in this world.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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


Autism will take center stage in a new family TV drama airing this spring.

“The A-word,” a one-hour, six-episode show, will air on the SundanceTV channel following the BBC premiere, according to an AMC Networks press release.

The show is a portrait of a fictional family after their 5-year-old son Joe (played by Max Vento) is diagnosed with autism. The series follows them learning to understand the diagnosis, facing differing parenting philosophies and dealing with the intertwining and complicated lives of their relatives.

Photo of the cast of the new TV show "The A-Word"
Photo courtesy of AMC/SundanceTV

“[The show] is hopeful, honest and ultimately about the power of family and the range of issues that families can face together, from autism to aging to adultery,” Joel Stillerman, president of original programming and development for AMC and SundanceTV, said in a press release. “We can’t wait to share it with our growing universe of SundanceTV viewers.”

“The A-Word” is an adaptation of an award-winning 2010 Israeli series called “Yellow Peppers,” from creator, writer and director Keren Margalit, who is also executive producer on the UK series. This announcement of the show comes nearly a year and a half since the premiere of the sixth and final season of NBC’s critically acclaimed show “Parenthood.” “Parenthood” centered around the story of the Braverman family and often featured the challenges of one of the characters, Max Braverman, who has Asperger’s syndrome in the show. As it turned out, Max Braverman was based off the son of the show’s creator, Jason Katims.

Julian Maha, M.D., the founder and CEO of KultureCity, an Alabama-based autism nonprofit, thinks “The A-Word” has the potential to have a positive impact on our society, but that depends on how the story is told.

“Programs like ‘The A-Word’ bring a very interesting concept to television,” Maha told The Mighty in an email. “At the very least, it will help create more awareness on the topic of autism. At its best it could help promote autism acceptance and inclusion. The key is in the show’s execution and storytelling. If that is successful, this show could go a long way in helping the general public understand that autism can be an opportunity to live a life without limits outside the box.”

The Mighty reached out to Sundance to find out if anyone with autism is or was involved in the creation or production. A representative says right now, all the info available to share is in the original press release.

h/t Disability Scoop 


A startling truth has hit me this political season: America doesn’t understand that unemployment in the autism community can be largely caused by institutional discrimination.

This was a startling revelation for me, and one I would love to clear up because many people I meet on the autism spectrum (AS) would love to have meaningful employment.  People are often unaware of institutional biases and the way they can burden a particular group of applicants. I believe it is a dirty little secret in hiring, and it plays a large role in the unemployment of people with disabilities.

Human resources (HR) professionals have begun to take an interest in opening opportunities to people with disabilities. Some large companies, such as Walmart, have made this a focus. I am sure they would love to hire people with AS as employees, in theory. We tend to be conscientious, hard-working, responsible and honest people who follow rules carefully. I doubt Walmart employs many people with AS, though, for the same reason most large stores, companies and restaurant chains don’t, and my two-word reason may surprise you: personality testing. 

I believe this type of testing is the key to institutional discrimination against the autism community, and it is also an industry worth hundreds of millions, which explains my failure in taking this complaint to the Equal Employment Opportunity Commission (EEOC). Large companies attempt to weed out dishonest, antisocial, unreliable employees without the cost of an interview with standardized testing. And though the testing may weed out the people mentioned above, I believe it will be even more successful at eliminating AS candidates. There are two reasons for that, one obvious and one more insidious: extroversion and lie scales.

Extroversion is a key measure on most tests for entry-level employees. Questions are asked to pinpoint friendliness, preference for group interaction, skill with people, a love of customer service, large amounts of happiness, etc. On the surface, this does not seem to be discrimination. It can be argued that friendliness is a necessary skill for a waitress, a cashier or a customer service representative. Where this gets devastating and discriminatory is when you realize these stores aren’t merely giving these personality tests to their wait staff. These tests are being given to everyone: bussers, stock room employees, night staff, line cooks, file clerks, etc. These are jobs where people rarely deal with the public and where, given the opportunity, people with AS might excel, but thanks to an extroversion hiring bias, we may never get the chance.

Before I went with a group of AS advocates to the EEOC, I searched autism chat boards for stories about employment discrimination and personality testing, and I remember one story that broke my heart. This young man was not socially skilled with people but had a deep love of animals and skill at caring for them. He was excited when his local pet store posted a job for a night employee to work at the store and care for the animals during the evening hours. Few customers would come during this shift, and he was excited to care for the lizards, small mammals and tropical fish at the store. He knew he was qualified for the job until the smiling manager presented him with the Personality Test taken by all employees. Needless to say, this young man was still unemployed.

But people with AS often have high intelligence, you might argue. They tend to be honest people, but they could be trained to take personality tests and pretend to be extroverted for the noble cause of employment!

I was taught to fake extroversion on personality tests, but I am here to tell you I still faced two years of entry-level unemployment for a more insidious reason — a staple of all personality testing: lie scales. Lie scales are a clever invention of standardized testing companies inserted into tests to detect deception and dishonesty in a potential employee. Innocuous questions are inserted into the tests and often repeated, and there is a certain way that honest, neurotypical adults respond to these questions when they are not being deceitful. People who fail to respond to these specific questions the way a “normal, honest person” would are eliminated as deceitful.

Here’s the obvious problem: by definition, a person on the autism spectrum has a brain wired differently than an average brain. So when I answer questions, no matter how honest I am, I do not answer them the same way a neurotypical person does. Even when I try to be dishonest and mimic an honest, “typical” person, I don’t do it correctly. It literally hurts my brain to lie, and yet I am constantly eliminated as “deceptive” from candidate pools due to personality testing. The irony is that employers concerned with employee honesty and conscientiousness could ask for no more than an employee on the autism spectrum, yet their systems eliminate us without a second glance.

This is a reason why employees with the intelligence, skill and independence to work can’t find entry-level employment or gain work experience; not low self-esteem. Can this problem be solved? I suggested the EEOC require a hidden autism scale in the standardized testing. This scale would be designed not to expose applicants on the spectrum but rather to automatically pass these candidates on to the interview process, so they could be interviewed and judged on their merits, without testing bias. Please excuse my passionate efforts at lobbying, but if you care about an unemployed person on the autism spectrum, please share this piece. Please help me end at least some of the employment discrimination in the AS community.

Two women, one behind a table working and the other looking at the table

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.


Oklahoma lawmakers and parents are fighting for insurance coverage of children on the autism spectrum.

Oklahoma is one of only seven states that do not require insurance companies to help with autism treatment and medication costs, Fox 25 reported. In an attempt to change this, Representative Jason Nelson authored House Bill 2962, which will make insurance companies cover treatment and diagnosis costs of children on the spectrum up until they are 18.

Parents have left the state because they say the cost of much needed and evidence-based treatments are too much, especially when many of the states surrounding Oklahoma have laws in place that require insurance companies to pay.

It kind of stinks when you’ve been paying into your insurance and they tell you ‘we’re sorry you’re not covered,'” Phil Inzinga, an Oklahoma resident and autism parent, says in the video below.

This is only the state’s latest attempt, because in 2008 a similar bill, “Nick’s Law,” named after Nick Rhode, was proposed, but the bill was never even heard. The Rhode family ultimately left the state.

Get more on the story from the video below: 

 


Just now I was sitting outside on the porch, enjoying the fresh air and only slightly cool breeze that is a Texas winter, and had a rare, contented moment of thinking, “I love my family. I am so lucky.”

For the ordinary person, that wouldn’t be an unusual feeling to have, but having a child with special needs means that sentiment doesn’t fit into society’s narrative of what it’s like to be a special needs family. I should love and be devoted to my family, but I shouldn’t necessarily consider myself lucky.

“That’s not true,” you say. “I wouldn’t be surprised to hear someone say they felt lucky in their special needs family.”

But way deep down, maybe there’s that tiny, dark place where you think, “I feel so lucky to have ‘healthy’ children.” Because to many people, someone with a disability is an “other.” Her child is different from my child.

But I tell you, I am lucky. To an extent, most of us special needs families are. This isn’t the part where I say, “We’re not lucky because of the disability, we’re lucky in spite of it.” And I’m not going to run through all the valid attributions of “being lucky to have my child alive” or “being lucky to have a child at all, when many can’t.”

What I’m referring to is the unavoidable and essential ability to view things through someone else’s eyes (to the extent that you can). With autism, you must learn early on how to ferret out the antecedent to a meltdown, or you won’t know how to avoid future meltdowns. Was it a sensory response? Was he overstimulated? Is he coming down with something? Are his clothes uncomfortable? Did the change of routine cause an anxiety overload? You think of little else for days or weeks on end, not because you want to, but because you become obsessed with trying to understand your child.

When you’ve finally uncovered that the sound of your hairdryer is causing your child major anxiety, you set about changing the environment so your child won’t be caused distress. Most of us will close doors and get our child noise-canceling earphones. We know avoiding hairdryers for the rest of their lives isn’t reasonable, but making small, doable changes is reasonable, and you are relieved to ease your child’s pain by just that small accommodation.

In short (lie; this is terribly verbose), you learn how to critically examine cause and effect, and analyze the interactions of different experiences on mood and behavior. Because you have to.

This brings me to my hypothesis: most “typical” people don’t have to think in those terms on a constant basis. I would venture that the “average” person goes about their day, giving little thought to whether the sound their shoes make on the tile floor is bothersome to someone, or whether they’ve properly prepared to use their hairdryer.

The reason this acquired necessity makes us lucky is because it gives us an enhanced way of viewing the world. You many not understand why that enhancement is as valuable as it is, so I’ll try to illustrate it.

Imagine if you worked at a convenience store, and one evening a young man comes in and holds a gun to your head, demanding all the money you have in the cash register.

Now, some of you would try to calmly do as he asks, hoping and praying he just doesn’t kill you. Some of you might actually try to fight him, or grab for a weapon behind the counter. Either way, no matter which way you responded, you would probably feel angry and want him put in prison for a long time. He’s a criminal. He’s a scumbag who steals from hardworking people instead of getting a job.

And maybe he is those things. But how many people would take the step beyond to wonder what conditions came together to make up this man’s life, leading him to commit those crimes? And to have the wherewithal to know that asking those questions, caring about those possible conditions enough to give them careful thought, doesn’t mean you’re excusing the behavior or the need for a consequence. On the contrary, having those thoughts leads to discussions. And discussions lead to careful inquiry about important circumstances that shape people’s lives, like poverty, racism, classism, disability, gender identification, sexuality, family dynamics, community and health resources.

Maybe you’re thinking you would be the kind of person to think about those things. At the same time, thinking about those things and even talking about them doesn’t mean we can run right out and make all those changes so that everyone has a wonderful upbringing, right? That’s true, but we’re not stopping here. There’s a next step to this.

The next step in this process is to consider: if we know that human beings growing up in certain environments are more likely to have some kind of negative outcome, which ultimately affects society as a whole, then how do we begin making changes right now that will create positive long-term effects in our country? With the knowledge of how conditions shape human behavior, do we reconsider how we approach the big topics we wrestle with as a nation, like wage equality, access to women’s health services, investing in impoverished communities, mental health services and access to higher education? Do we look at the utter failure of our prison systems to “rehabilitate” criminals, as evidenced by the high rate of recidivism? Do we think about whether spending federal dollars upfront to avoid future criminal behavior by investing in people and their environments, rather than spending it to house them endlessly in prisons that are perpetually bursting at the seams? Do we then apply this advanced level of critical thinking to the choices we make politically?

Have I lost you yet? Are you tired of trying to keep up with this train of thought?

As exhausting as it may be to analyze things to this extent, it’s the very reason I feel lucky to have a special needs family. The training I got from my son has given me a lot more anxiety, that’s true. But it’s also given me the ability to think far ahead about the cause and effect of conditions on human beings. And it’s given me the invaluable knowledge that it’s essential to our long-term survival to see the kinds of changes needed to elevate us as a species, rather than remaining unconcerned for those “other” people until they come to us to commit a crime.

I am lucky. My life and my thoughts are infinitely more challenging and complex, and it’s worth it. If it wasn’t for my son, maybe I would be someone who thinks we need more guns, more prisons, more walls, more police, more us versus them.

Instead, I’m someone who wants more access to healthcare, more education about diversity, more community centers, more access to housing for the homeless, more benefits for veterans, more mental health resources, more kindness, more love — because I know these are the kinds of supports that shape positive outcomes that ultimately affect all of us.

Follow this journey on The Connor Chronicles.

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.

Lead photo source: Thinkstock Images

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.