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When My Son on the Autism Spectrum Told Me He Didn't Want to Be 'Special'

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I’ll never forget the day my son came to me and said he didn’t want to be “special,” he just wanted to be “normal.” I was so blindsided by it I didn’t know how to respond at first. I asked him to elaborate on it, and he told me everyone’s response to him not being able to do something because of his autism spectrum disorder was to tell him he was special, and he hated it. He didn’t want to be “special” if it meant having a hard time doing things others could do more easily. He would much rather be “normal” and be able to do the things everybody else could do.

I took a moment to take this in and consider how to respond to it. I knew whatever I said could have a lasting impact on him, and I was terrified of saying the wrong thing. I began by telling him I understood his frustration. It was a fact that he faced certain challenges because of his autism, but he also excelled at certain things. I told him everyone was special in some way, because everyone was unique. No one person was like another person. We are all different. We are all good at some things and not so good at other things. I gave him examples of the things he was good at and I wasn’t good at, and the things I was good at and he wasn’t good at. This piqued his interest and got him so excited he decided to make a list of things others he knew were good at and weren’t good at, and I knew he was going to be OK.

The days that followed had him going around asking people what they were good at and what they weren’t good at. By the end of it, he had a notebook full of profiles of people we knew, and I had found out more about them in a couple of days than I had in years!

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Taking Pride in My Autism

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As a child, and well into my 20s, I’d become “overexcited,” spinning in circles on the hardwood living room floor in front of my parents, flapping my hands with excitement, dancing in circles, sliding side-to-side. I’d scream and cry when certain sounds came on the TV, and have meltdowns when my shoes didn’t feel right or I had to wear certain materials. Someone actually took a picture of one of my meltdowns over ill-fitting shoes.

My autism wasn’t acknowledged throughout my life, until just recently. My mother was once told I was autistic by doctors, but she chose not to believe it and said to me, “You’re artistic, Charlie.” That was one of my many nicknames.

I still have these moments, but now I don’t feel ashamed of them. I no longer believe I must act “normal” or neurotypical. I’m much better when it comes to clothing now, but that’s mainly because I can choose my own. A nose tic I’ve had all of my life is no longer a mystery, as many people with autism can have tics. Everything has fallen into place due to a couple of observant professionals. I can’t be thankful enough.

I take pride in stimming, especially at home or in the car (a place where I need extra calm). I’ve made my own sensory toys and bought some as well.

Though my autism diagnosis wasn’t acknowledged in my younger years, I was in special education. It was the right kind of education for me. I thrived there. Not everyone learns the same. I process slowly, and at the new alternative school, I didn’t have to listen to lectures. I basically got to choose my own courses, and they were mostly dealing with abnormal psychology.

I have lived my life acknowledging I was probably an “Aspie” on and off, until one day a sociologist said, “You’re autistic, aren’t you?” I was blown away.

My point is, special is amazing. If you are a parent with an autistic child, I hope you realize that. If you are autistic, I also hope you realize that.

Follow this journey on Perpetually Autistic.

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The Fears — and Hopes — I Experience as the Parent of a Child on the Autism Spectrum

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I’m scared. There I said it. I’m the mother of a 5-year-old boy, Mason, who has autism spectrum disorder. Mason is beautiful and wonderful in so many ways. I try to come off strong and spend every day of my life fighting for him. But every day on the inside, fear eats me alive.

“But you seem so strong,” everyone says. But my fear is also strong. From the moment I wake up until when I go to bed, the thoughts run across my mind.

Will he speak today? He’s been pretty quiet the last few days. Is he mad at me because sometimes I don’t know what he is trying to say? Does it feel like he’s trapped inside his own head and he’s screaming to get out? Will we ever have a full conversation?

What is he doing at school right now? I wish I knew what was going on. Is he having a good day? Is anyone being mean to him? Is he happy? Is he being treated well on the bus? Is he smiling as he sits in his seat on the ride home?

Is his health OK? From what I can see it is. We’ve had a lot of tests done — is there anything I’m missing? Does his body feel OK? Is he healthy?

Will he ever fall in love? Will he ever be in a romantic relationship? What kind of friendships will he have in his life?

Where will he be in 10 years? Will he be OK living with us? Or will he be independent?

What happens when my husband and I pass on? Who will take care of him then? Who will know how to take care of Mason the way we do? Will he be scared? What will life be like for him when we are gone?

Fear. Those are the fears. Every. Single. Day. Those fears are strong.

“But you seem so strong,” they say. In my experience, there is one thing that is stronger than those thoughts. And that is hope.

For me, hope goes a little something like this.

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Sure, he didn’t speak much the last few days, but did you see the way he was focusing on my mouth when I was talking today? And the way he used pictures to talk to me today? He is really starting to get the idea of communication, the social exchange. With time, and therapy, we will be able to communicate more. I won’t give up. I’m hopeful.

When he gets off that school bus and he looks at me and smiles, I really do see the happiness in his eyes after he comes home from learning in an environment that’s suited to him. And I’m hopeful there will be more good days for him ahead, and he will continue to grow and progress. We see the change in him.

I see him run around the house and outside in the yard, smiling and laughing, playing with his toys and his brother. Sure, he has his health issues, from non-convulsive epileptic activity in his brain to sinus issues, but we’ve done every test and explored every avenue we could when it comes to his health. And things are getting better! I am thankful for his health, and I am hopeful that whatever future problems arise, we will be able tackle them the way we have with these ones.

As for love — I see love in his eyes every day. His love for me and his dad, his little brother, extended family members. His love for friends and neighbors and therapists. I see it. I don’t know what the future will bring in terms of relationships, but I have hope. I have hope because I see the love in his heart.

I don’t know where he’ll be in 10 years or even one year in terms of independence. But you know what? In the past year, he’s made incredible progress in dressing himself, brushing his teeth, and taking care of his own needs. I am so proud of him! If he can do all of this now, imagine where he will be next year. And the next!

And who will take care of him when we pass? I can’t think like that right now. I can tell you that the progress I’ve seen in my child over the last few years has been nothing short of amazing. I hope that he will grow to accomplish things beyond our wildest dreams! But who will be around to catch him if he falls if I’m not? I don’t know the answer to that, but I can tell you that he has an amazing support network of people in his life — family, friends, teachers, therapists — and that he is really and truly loved. He has this way of touching people’s lives with his smile and his heart. And I am hopeful these people will continue to be there for him and his network will continue to expand and grow, so he will never be alone.

Leaving the fears of 2016 behind, I am reminded of a quote I read a while back saying, “Hope and fear both require you to believe in something you cannot see. You choose.”

There’s a new year coming. Mason has made progress, and he gives it his all every day. So for you, my boy, in 2017 I’m choosing hope. My hopes are stronger than my fears for you, and my love for you is stronger than anything in this world. I’ll be with you every step of the way!

Images via Contributor.

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Costco to Host Quiet Shopping Event for Those on the Autism Spectrum

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Costco lovers, rejoice! The discount wholesale retailer is the latest company to offer a sensory-friendly shopping event geared towards those on the autism spectrum.

As part of the event, Costco will remove its visual displays and lower store lighting. “[It is] really helpful for stores to reduce the odors, reduce the sounds, reduce the distractions that make it really hard for children as well as adults,” Jim Runyon of Easter Seals, Central Illinois, told WMBD.

The event will be held on Friday, December 16, from 8 a.m. to 9:30 a.m. at the Costco in East Peoria, Illinois.

Costco joins Target, which hosted a sensory-friendly event on December 10, as the latest retailer to offer an alternative shopping experience. Other companies, like Toys “R” Us and Chuck E. Cheese’s have also recently unveiled sensory-friendly events.

While more companies are beginning to offer specialized shopping events, the programs are usually limited to a handful of locations. In most cases, individual stores work with nonprofits or community leaders to create a customized experience at that particular location.

Update: A spokesperson for Costco told The Mighty,”This was a one time event, in one location supported families, caregivers and/or anyone associated with Autism in the community. Unfortunately, we are unable to provide a response regarding any possible future events.” 

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Photo credit: Mike Mozart

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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.

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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.

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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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