Side-by-side photos of Lamar as a teenager and Lamar today

To the Teenage Me Who Hasn’t Received an Autism Diagnosis Yet

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Exactly two years ago, I walked into the office of my therapist. I sat down on her couch with my wife by my side. I took a long, deep breath and slowly exhaled, waiting for some answers to my 36 year-long question. After what seemed like a life time, she grabbed her clipboard. She glanced over the multiple assessments we had completed in weeks prior and looked me in the eye (well, at least she tried), uttering the three words I had both worried about and wanted to hear: “autism spectrum disorder.”

While the diagnosis didn’t change who I was, it did change my understanding of who I had been. In many ways I have spent the last two years learning myself all over again.

At times the journey into the past has been perplexing. Other times the journey has been painful. Ultimately the journey has ignited a passion for sharing my story, serving others, and speaking words of hope and encouragement for all those who also walk this path.

One the most interesting and educational parts of my journey has been the time spent reflecting with my family. According to my mother, a teacher once told her, “Lamar is very smart, but there is something wrong with him and I can’t quite figure it out.” 

I never heard her say those words. In fact, I never heard most of what people said about me or around me, but I felt it. I felt it so strongly that the smart but somewhat difficult, awkward, and puzzling kid went away around middle school. What surfaced was a frightened child who created a phony image of myself because I desperately needed to survive a world that my brain wasn’t built for and a society that thought I was strange.

My grades began to plummet because while I didn’t always know what to do, I learned what not to do to fit it in. Don’t be smart. Mask your intelligence. Pretend to be someone else. Nod and smile. Be “normal.” This was how I survived until high school when it stopped working. My freshman year of high school I was kicked out of school for not going to class. If you had asked me why, I wouldn’t have been able to explain.

I knew my strategy had to change. I had exhausted the energy needed to continue my façade of fitting in, and I was failing miserably. At age 14, I turned to drugs and alcohol as a response to pressure to behave like a “people person” and entertain the unreasonable expectations the world placed on me. It led me down a road that dead ends at the corner of lonely and lost.

Thankfully, I survived and am doing well today, but decades later I find myself searching for more ways to use my story, my experiences, and my past to point other young autistic boys and girls in the right direction. I can’t change my past, but perhaps I can help change someone’s path.

If I had a chance to write a letter to the undiagnosed, brilliant but bullied, burdened, and burnt-out young teenaged Lamar, this is what I would say. Perhaps if you’re young and on the spectrum, it may help you too.

Dear Lamar,

Let me cut to the chase. Everyone is right. You are different. It’s OK, embrace it. Different does not mean deficient. In fact, I’ve learned at age 38 that the only way to truly make a difference in the world is to be willing to be different. You were born to make a difference, so be different.

Don’t aspire to be “normal.” Trust me, normal isn’t working anymore and it hasn’t been working for quite some time now. The reality is that “normal” in many ways has been defined by others. The world is filled with different types of minds, and maybe the problem isn’t being normal — perhaps the problem is with who has decided what “normal” means.

I know you’re only 14 right now, and fitting in seems to be the primary purpose in life. But I have to tell you that the pursuit of pleasing everyone will leave an enormous void in your heart. It will also leave a void in the world. That void can only be filled with your unique voice, a voice that can bring change. So don’t aspire to be normal, aspire to be a leader.

Your voice has the potential to be bigger and broader then you believe. Your voice matters, and because of it, you can break down walls and barriers with a blunt force brought on by your relentless pursuit of your dreams.

I am challenging you to not just shatter the glass ceiling over your head, but to burn down the entire building and use the flames from the fallen stereotypes to blaze a trail that leaves your trials in ashes.

Allow the curiosity that comes so naturally from your autistic brain to capture your imagination. Use that imagination and curiosity to challenge the status quo. “We’ve always done it that way” is not a reason; it is merely an observation from someone else. Always believe more in your potential than in the problems people say you have. Dare to go first. Lead with conviction and character, and be greater than their best excuse. Your mind is beautiful. Your voice is powerful. Your purpose is wonderful.

Don’t settle for normal. Be great.

Sincerely,
You (2016)

A version of the post originally appeared on autismpastor.com.

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How I Self-Advocate as Someone on the Autism Spectrum

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Self-advocacy is an important tool that can be used by adults with disabilities. It is important to to get one’s voice heard as to how he or she should be treated in today’s society.

It can depend a lot on how you use your voice to advocate for yourself. How did I learn to do this myself? I belong to an adult autism support group, and I am the group’s Chairman of our guest speaker series. I am the person who goes out and seeks guest speakers for our group’s monthly meetings. How did I do this? I sent out emails to important people in the greater Harrisburg area. When I first started, I thought I would not get anybody. It was a lot of hard work finding people who work with both children and adults in the autism community. But boy was I wrong! I think my first guest speaker was Pennsylvania State Senator Pat Vance. She came to our meeting, and we had a frank discussion with her about issues important to adults on the autism spectrum.

From that point to today, I have about eight pages of guest speaker contacts. They range from state senators to state representatives, from the director of the Pennsylvania Bureau of Autism Services to two college professors and the Deputy Director of Developmental Programs in Pennsylvania. I have other contacts as well, including people who work at autism organizations.

Here are my tips for starting to self-advocate:

Use a phone book to look up your local city and state representatives, or find their websites online. They will have a place on their websites to contact them either by email, phone number or mailing address. Their websites might also include their office hours. I find the best way to contact my guest speakers is by email, but you can contact people by your own method of contact.

Once a person is contacted, keep in touch as often as possible so they know you mean business. That might mean going to the office, emailing, or calling. Get a discussion going as to what type of help you need.

Self-advocacy is important for someone who is disabled. There are many people who will help you. I have been advocating for our adult group for many years now, and I have become a pro at it. The first move is up to you — you can either write a letter, you can email an agency or person or make a phone call to your state representatives, people in Congress or anybody else who works with disability organizations.

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How I Feel About Elf on the Shelf Having Grown Up on the Autism Spectrum

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It’s that time of year again: For some, a time of peace and joy and love. For others, a time of celebration. For me, it can also be the time of stress and anxiety.

As someone on the autism spectrum, the holidays can be full of difficulties for me. There’s always a change in routine. Sometimes, there may be traveling involved. At some point, I usually end up in a meltdown.

While I’ve never really been a religious person, I grew up celebrating Christmas. I knew Santa would be visiting my home each year, leaving gifts under the tree. The excitement always led me to be so exhausted I’d start acting out. I tried to be on the “nice list,” but every year I wondered and worried, was I “good enough”?

As an adult, I have a much better grasp on handling the holidays. I stick to routine, and I rarely travel. But when I was in my early childhood development class, I heard of a new trend that has me worried for children today, especially children on the autism spectrum.

Apparently, there is an elf, which comes with a story to explain the “rules.” This elf watches a child’s every move and reports it all back to Santa. It moves around each night, but if the child touches it, the magic disappears. The elf is supposedly there to make sure the children behave.

My issue with this is that rather than simply being a fun toy or decoration, it could lead kids to think every move they make is being judged by a powerful man. In class, we even heard of an incident where a child accidentally touched the elf. The child was unable to go to school for three days because they were so upset they made themselves sick. If I were a kid, that wouldn’t be fun to me. That would be scary and stressful. And to me, this time of year is already stressful enough.

So please, if you want to get an elf, or already have one, have fun with it! Use it as decoration, and put it in funny places. In fact, let the kids come up with some cute ideas! But maybe don’t make the children think that it’s watching their every move, or that it loses its magic if they accidentally touch it.

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3 Ways My Sensory Issues Have Changed My Perspective

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I remember when I was 11 years old, I was in a car with about five teenagers, and I was squished in the back. They decided to play a loud pop song, despite my sound sensitivity, and despite me begging for them not to. I held my breath and prepared myself for the song, but this time it felt different. I was next to so many people, and it hurt. I was hearing loud noises, and that hurt. I began screaming, they began telling me to be quiet. But I couldn’t stop.

That was my first meltdown. Three months later was my first panic attack. Three years later, we realized what was really causing it.

It hurts, physically, when I experience an overload of senses. But I’m thankful for my sensory issues, and here’s why.

1. It makes me love other senses more. The feeling of jelly bubbles makes me laugh. The color of bright blue makes me smile. I also love soft electronic music, and it gives me some physical, joyful feeling as well.

2. It teaches me patience and strength. It’s hard to go places when there are sounds and movement erupting all around me, but I’m forced to do it daily. That means I get tougher and stronger every day.

3. I can understand others more. I’m not usually good at sympathizing, as I have trouble truly understanding people’s emotions. However, with my sensory issues, I believe I am better able to understand some of the experiences of people I know who have autism spectrum disorder, ADHD/ADD, sensory processing disorder, and sensory-related anxiety. With my sensory issues, I also know a lot about panic attacks and meltdowns. I believe it makes me wiser.

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My Son on the Autism Spectrum Won't Have a Picture With Santa, and That's OK

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Recently a friend of mine posted online a photo of her son sitting on Santa’s lap when he was a baby. It was a darling photo, the kind many parents hope for, full of sweetness and delight.

We do not have a photo like that because we never took our son, the Navigator, to sit on Santa’s lap. We never even tried.

Even before his diagnosis of autism spectrum disorder, I just knew trying to get a photo would fail. Loading him up in the car — outside of his usual routine — would make him tense. If we had tried at night, it would add an element of an unwanted unusual on top of a day’s worth of sensory stimulus.

The crowded mall with its echoing noises, strange smells, incessant florescent lighting, flashes of colors, and movement of many people could have sent him into sensory overload. Add to that standing in what could have been an endless line full of potentially equally unhappy, crying children could trigger more stress in the Navigator.

And top it off with being handed to a potentially terrifying stranger who could barely be seen behind a false beard. It had all the ingredients of a meltdown catastrophe, and I was unwilling to put us all through it.

Still, seeing the adorable photo of my friend’s child, knowing there is a cultural and traditional element to crafting that memory, and seeing the lovely feelings captured in that moment, I wondered for a moment if we missed something.

But just for a moment.

Even though I didn’t have a name for it at the time — autism — I always felt the “traditional” memory of a photo on Santa’s lap would not be worth it to me when I knew, for whatever the reason, it could make my son miserable.

I made a decision early on in my parenting to forgo “traditional” kinds of things if it appeared that trying to achieve it was not going to be worth the cost to get it.

Sometimes we got a first day of school picture. A lot of times we did not, but we got a picture later in the year. We had a photo memory, just not on the first day.

And that was OK.

If I were to stop and think about it, we have probably missed out on some common events and experiences because we chose our son’s comfort over a “tradition.”

But what is the point of participating in traditional experiences if we are not really enjoying them? Or worse, causing potential harm by forcing ourselves to do them, because it is a “tradition”?

I think the only feeling I would remember would have been the misery we experienced and guilt for forcing it to happen.

So, yeah, no photo on Santa’s lap.

What we have instead is our son’s trust in us that we won’t force him through hell for a “tradition.”

For me, that is the best feeling of all.

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C.A.R.E Box Is a Subscription Service Designed for Children With Autism

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If you are a fan of subscription boxes, you’ve probably noticed there is a service for almost everything – makeup, wine, clothes, games – and now, toys and educational activities for children on the autism spectrum. Launched by Spectrum Toy Store, a toy store in Illinois designed for children with developmental disabilities, C.A.R.E Box is a monthly subscription service for children on the autism spectrum, ages 13 and under.

Each box contains a combination of sensory toys, products and educational activities, customized for your child’s level of development. “If a parent is concerned about their child’s math skills we may include a board game like Chutes and Ladders that involves counting, number recognition and addition. In that box we may also include an addition and subtraction reusable placemat, fun math flash cards, etc,” Jamilah Rahim, the owner of Spectrum Toy Store, explained. “We would also include a variety of suggested ways to make the game more exciting so that the child doesn’t lose interest.”

Rahim, a behavioral therapist, understands the unique challenges parents face when buying toys and gifts for their children. “One of the biggest concerns parents have when buying their children toys is ‘How long are they going to play with this before they are no longer interested and I have to go buy something else?’” Rahim told The Mighty. “We want to expose the population we serve with a variety of toys to learn from and activities that not only support the use of that particular toy but activities that take learning a step further than it’s intended use.” 

C.A.R.E Box is not the only subscription service for children with sensory-sensitivities. Sensory Theraplay is another subscription service, created by a pediatric occupational therapist, that features sensory-friendly toys designed to help develop sensory motor skills. Sensory Theraplay boxes are meant for children between the ages of 4 and 8 and include toys meant for therapeutic play such as putty, textured tactile toys, fidgets, light up toys and craft activities.

Those interested in receiving C.A.R.E Boxes can sign-up for $44.95-per-month subscription. A portion of proceeds from each subscription will help provide scholarships for out-of-school programming at Spectrum Toy Store.

Image credit: Thinkstock

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