Tattoo equipment and small containers of inks in different colors


Working in retail for some can be hectic, stressful and overall an unpleasant experience. Having autism and being in that busy, hectic environment can take a toll on some. But for me, despite the challenges, it has helped do the things I never thought I could do.

I work at a big-name pharmacy I usually do the checkout. I help customers make sure they have everything OK, and I work the register. Now, when I mention the register, that’s a big accomplishment because doctors and teachers thought that was a skill I could never do. But look at me, I’m doing it. Do I make mistakes? Yes, but instead of being hard on myself, I pick myself up and keep going at it.

One thing working at the pharmacy has done is helped me stay strong and not give up. One time I had a nasty customer who threatened to have me fired all because she wasn’t getting what she wanted. Now normally when people yell at me, I get red in the face, the tears start building up and I end up crying. But I wasn’t going to let that happen, and in that situation, I didn’t. I continued to have a good day.

Working in retail has really helped me remain happy but also be strong and not let negativity bring me down. I have a great group of managers who have taken the time to understand me as an employee with autism. Some I see more then others, and the two I see the most have really made a difference. One of my managers is so great. She reminds me every day that I should be proud to be me, and she really reminds me that working hard and having a positive attitude is the way to go. She also always tells me if you run into negativity, don’t put up with it. Instead, get rid of it because life is too short. She is just something special, and she brightens my days. She’s like my everyday hero, and she has helped me become a hardworking person. The next manager and I are total opposites. Sometimes I have trouble being around someone who is dry-humored because I don’t always understand it, but I do work on it, especially when I work with him. He is another who really wants me to be the best at my job, and he never wants me to be stressed out or unhappy. At first when I did start to work with him, I didn’t think he understood me as a person. One day, I asked him if he ever worked with someone who has autism. He told me yes, then he said he did understand me, he just treats me like everyone else. That really meant a lot to me. I realized that maybe having someone opposite of you in your life is a good thing. He’s become my everyday hero, too. Both my managers have taught me so much. I feel honored to work with two such strong individuals who do a great job.

Working retail has brought me so much happiness. By overcoming challenges, I have more confidence. Whether it’s working with different people or dealing with customers, at the end of the day I know I always put 100 percent in. This can be an example for others who have autism to try something outside your comfort zone. Working at the pharmacy has really helped me overcome challenges. I feel great being a retail worker with autism because I’m setting the example that I can do anything I put my mind to. Autism doesn’t define us; it’s a piece of us. We can achieve anything.

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You don’t see the child who desperately wants to be compliant and “good” but struggles to keep it in all day, then explodes at home in her comfort zone with those she trusts the most.

You don’t see the anxiety that stays like a knot inside, as the world and other people can be unpredictable, which leads to an overwhelming need to be in control of the world and those around her.

You don’t see how that very same anxiety, when built up enough, leads to the inability to face going to school or participate in much-loved activities until the “knot” has melted away enough to move on with daily life.

You don’t see that the child who is refusing to speak or engage with anyone or maintain eye contact, who may seem rude, ignorant, or antisocial, could actually be in shutdown and struggling to deal with surroundings. He may be desperate to join in but unable to due to his sensory overload or anxiety.

You don’t see the absolute need to know what is coming next to avoid the unexpected and the worry that comes with it.

You don’t see the strict and complicated routines that accompany things as simple as getting in and out of the bath, going to bed, leaving the house and meeting dogs in the street. Every. Single. Time.

You don’t see the exhausting, continuous warnings and countdowns given numerous times through the day to get through to the next part of the day without meltdown.

You don’t see the child who finds it more comfortable to sleep on the floor or with no clothes on than in a comfy warm bed.

You don’t see the child who wears the same things every day for comfort yet has a wardrobe full of lovely clothes to choose from but who can’t throw out of any of those clothes as they mean too much.

You don’t see how the “fussy eater” is actually a child who finds certain textures and smells very difficult to manage… or the years spent trying to increase the “acceptable foods.” It’s not as simple as forcing that child to eat what is in front of him.

You don’t see the child who worries about and thinks about death excessively but keeps it to herself for fear of it coming true.

You don’t see the obsessive resistance to simple everyday demands, like being asked to eat food, start a new activity or get dressed, the inability to “just do” what has been asked, without causing a fuss or delaying as much as possible due to anxiety.

You don’t see the objects that absolutely have to be collected, carried, displayed and kept, to feel at ease and comforted by the familiar and calmed by the order. You don’t see the inability to throw anything away, no matter how insignificant it seems to you, even empty packets and what you may call “rubbish.”

You don’t see the all encompassing intensity of the interests and obsessions and the need to share it with anyone willing to listen.

You don’t see the confusion or distress as to why a person may have behaved or reacted in an unexpected way.

You don’t see the rigidity of thought and inability to stray far from that expectation or pattern without invoking panic or anger as a result.

You don’t see how the child having a “tantrum” is actually overwhelmed, or upset because something doesn’t make sense, has changed without warning, or is out of order. Sometimes the demands have just become too much to process. You don’t see that the parent trying to deal with it, doesn’t need your stares, comments or judgment to make her feel any worse than she already does. This is a meltdown, not a tantrum. It isn’t about getting her own way – though it can sometimes be about controlling her environment to alleviate the anxiety inside.

You don’t see the build up of fear, anxiety and helplessness as a meltdown is triggered, building like a wave, unable to be stopped. You don’t see it come crashing down catastrophically, unpredictably, sometimes lasting for hours. The need for space, calm, unending patience and understanding but displaying itself in kicks, punches, scratches and lashing out verbally, anything to end the feelings of confusion before it finally ebbs away.

You don’t see the self-hate, recrimination and regret that comes after that meltdown, the desperate wish to take back the words and actions that were totally beyond any rational control.

You don’t see the tears, the frustration, feeling “different,” “weird,” “abnormal,” and “inadequate,” when actually he is a kind, loving and unique and exceptionally clever in so many ways.

So what do you see?

You see a happy, confident and chatty child. You’re seeing the need to be accepted and liked and to fit in, a child who is clever enough to have learned the “social norms.”

You see a child who enjoys drama and pretending – who is good at taking direction and acting the part. You’re seeing the child who finds it easier to deal with scripted interactions and conversations.

You see a “normal” child who has her moments – like all children – but is generally well behaved. You’re seeing a child who saves his worst times for the safety of home and those who understand him and won’t judge.

You see a polite child who can converse well with adults. You’re seeing a child who finds interactions with adults less unpredictable and confusing than with peers.

You see a tiny snapshot of time where she can hold herself together long enough to pass as “neurotypical” – like you may be.

You see what you want to see. You see the mask.

A version of this post first appeared on Steph’s Two Girls.

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Thinkstock photo by Jupiter images

Last month was the second anniversary of my son’s diagnosis. At the time, I was tired and stressed, questioning my place at North Dakota State University (home of the Bisons) as a graduate student. I had a full-ride scholarship — but still, how was I to find a daycare to go to class and work? There were multiple times I was told my son could no longer access the daycares available, and that his needs were more than what the daycares we visited could meet. Finally, when the second one in a month told me to get my child medically evaluated, I was told, “Your son has autism and sensory processing disorder.”

I’ll admit that I didn’t quite know what those diagnoses meant in their entirety. I’ll admit the first time I ever Googled “autism” was after my son’s diagnosis. Those are not things I am proud of these days, but they’re the truth. I just didn’t understand. I wasn’t told in terms that made sense to me at the time. I was uneducated and felt so alone as a single parent. I felt like nobody I knew at that time quite knew what I was going through — at least not that I knew of…

The one thing I really struggled with on diagnosis day was the label: autism. I knew the diagnosis didn’t change who my son was on the inside, the compassionate boy I know and love. But I was afraid people would judge him over the label. Would people see my son for who he really is and not for the diagnosis he has? It was the fear of the unknown. It was the fear of people judging him before they really knew him.

The same day my son was diagnosed, we were referred to the ND Autism Center. They took him for a daycare observation day. I chose to go to work while they observed. As I sat at my desk that day, I dreaded talking to you. I dreaded having to tell you my student organization days were over, at least for that time. When I finally mustered up the courage to speak to you in our student organization office, I asked for your privacy. It was there that I finally broke down into tears. As strong as I tried to be through it all, I finally let myself be vulnerable in front of someone. You were the first person I felt comfortable enough to do that in front of. Through the tears, I confided in you the news of the day, the fears of judgment, as well as my fears for my son’s future. I told you I didn’t know if I would remain in school and if I could afford a specialized daycare program. I felt like home was where I was most needed. You sat and listened to me speak without interruption. You let me feel heard.

After all was said and done, you turned to me and said the most impactful words of my life. “You’re both going to be fine. You’re going to be able to do this and remain here in school where you belong. I know you’re scared of how people are going to view him, but they will see your son for who he really is. He will be able to accomplish anything he puts his mind to. The diagnosis just means that he will start getting the extra support that he needs. You want to know how I know all of this? It’s because I’m autistic too.”

I was awestruck. I had been friends with you for months and had never known this about you. You confirmed that despite my fear, we could overcome any challenge that comes our way. Autism isn’t something you can see — it’s different from child to child. You taught me that labels don’t define the child — they can also serve to help. You helped me see I needed to educate myself about ASD and sensory processing disorder (SPD) to fully understand what my child was experiencing and how to help him. You gave me the hope I needed to keep pushing forward.

Here we are two years later, and I am approaching my graduation soon. I will be the first Ph.D. in my family. My son started his first school sport, and he is doing very well. His coach says he just loves his enthusiasm and his eagerness to practice. He is successful in many ways. We both are.

You helped us get here. In all my years of university, the most valuable lesson I have been given was one learned outside of the classroom. It was learned in a small hallway by one of my peers.

I guess what I am trying to say here is thank you for teaching me my most valuable lesson so far as a parent. Thank you for telling me everything was going to be OK. I now know every word you said in that tiny hallway was a deeper truth than I could have ever imagined. Thank you for showing me the strength I had in myself. Thank you for showing me the true strength of the herd.

Sincerely, the fellow Bison,

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A troubling phone call from a mother of a child with autism in Kentucky left Julian Maha faced with a significant challenge. Her daughter, the woman told Maha, had wandered outside of their home and nearly drowned. She was concerned because she had already bought items designed to keep her daughter safe. Now, she was reaching out to Maha, the founder of the autism nonprofit KultureCity, asking if he could come up with something better.

Maha and his team went to work, trying to devise a kit that would help families in need. They began testing devices within the autism community in Alabama, where KultureCity is headquartered. “Our big thing was we wanted to provide some sort of tracker,” Maha, whose son is also on the spectrum, told The Mighty. “We knew that a GPS device was the gold standard, but at the same time, from a cost factor, it was prohibitive to the families because a lot of them couldn’t afford the monthly rate.”

After months of research and experimentation, KultureCity began its lifeBOKS program, featuring four items designed to prevent children with autism from wandering off, also referred to as “eloping,” and drowning. To help as many families as possible, KultureCity provides all lifeBOKS for free. (There is a $5 shipping charge, which Maha said is waived for families in need.)

Photograph of SafetyTats in a LifeBOKS

Each box contains a Joey Tag bluetooth bracelet, a tracking device with short-range GPS and no monthly fees; wireless door and window alarms, shoe tags with QR codes, which would allow first responders to identify nonverbal children, and SafetyTats, skin stickers that act like temporary tattoos and allow parents a waterproof way of making sure their kids carry emergency contact information.

Now in its eighth month, KultureCity’s lifeBOKS program has provided boxes to approximately 1,200 families. “We’ve prevented 33 drownings so far,” Maha said. “We never want a child to drown on our watch.”

Telling people you are autistic can be hard. It can be even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like…

“Why are you complaining all of the sudden? You never used to talk about autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.”

These people are less than half-right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people, nobody believed me — so I stopped.

When I was in school, I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick. The doctors told my mother there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up, so I spent my life sick, experiencing pain and discomfort.

My mother told me I had to go to school or she would go to jail. Not wanting to lose my mother, I sucked it up and went. (Side note, remember people on the autism spectrum can take things literally. Be careful what you say to your children.) I experienced this pain and discomfort in silence for 30 years.

I’ve always been different, but my mother told me never to reveal your flaws — so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard eventually led me to an autistic burnout (autistic regression). Finally, as my sensory symptoms intensified, after years of confusion and being told “everything was in my head,” at the age of 30, I received a formal autism diagnosis.

Am I happy to have a disability? No, but I am happy that finally a doctor has an answer for me. After years of searching, I know the reasons for my pain and discomfort. I am happy I finally have the answers and information needed to take care of myself.

Is it wrong to want to feel empowered by information and truth? Should I have let this information crush me — would that be a more acceptable response to others?

They are also correct about my obsession with autism being recent.

I was Anonymously Autistic for 30 years and didn’t even know it.

I never spoke about autism before learning about autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero), I didn’t know what autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about autism.

Here is where people always get things wrong — I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger.

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain.” They don’t know about the secret headaches and physical pain caused by certain sensory experiences. If I try to tell them, they accuse me of complaining or exaggerating.

I’ve been acting like everything is OK for a long time now. It’s tiresome, but apparently I’m so good at “passing” that even some of my closest friends can’t see (and refuse to believe in) my autism.

It hurts that they think I am lying, but I try to remind myself they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Telling people you are autistic is hard for a multitude of reasons — people don’t believe you, people don’t know what autism is, people think autism can be “cured,” people think autism only affects children, the list goes on and on. I believe the worst thing about coming out is when you try to come out to someone close to you and they basically tell you, “No, you’re making this up. There is nothing wrong with you.”

When you don’t believe, it hurts so bad that I want to stop sharing, but I can’t because the world needs to know — for all the other Anonymously Autistic people in the world.

Follow this journey on Anonymously Autistic.

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