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When People Didn’t Believe My Autism Diagnosis at the Age of 63

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My autism diagnosis is still fairly new. This doesn’t mean that I’m new at being autistic. It just means I now have a label and a framework for understanding why I move through life the way I do.

There have been lots of ups and downs over the past six months since my final meeting with the psychologist. The best moments involved learning why I’m different from others in ways that, in the past, left me feeling hurt and alone. Just knowing it’s not my fault has been a source of tremendous healing for me. I know that many people fear finding out they might be autistic. I’m only sorry it took me so long.

Some things have not gone so well. Telling friends and family is at the top of this list. Not the telling part. This has been pretty easy for me, perhaps too easy at times. What’s been surprisingly difficult has been convincing people it’s true when I’ve told them I’m autistic.

That’s not true. You can’t be.

Oh, my neighbor has an autistic son and you’re not at all like him.

Who told you that? Did you self-diagnose?

I never would have guessed.

I get this. Most people don’t understand autism affects people in a broad range of ways or what passes for social awkwardness or shyness might be something else entirely. Mention autism to them and they think of a child or adult dealing with very significant challenges. They don’t expect to see it in the people around them, and as a result, they don’t see it at all.

It’s no surprise they also don’t understand how hard we work to fit in, to find and keep jobs, to make friends, to navigate all the little tasks that make up a “normal” day, to not feel depressed or rejected when these things are difficult, exhausting or simply impossible.

I learned early on what it means to be different. Kids don’t invite you to play. Bullies single you out. Your one friend at lunchtime is the book you brought from home. Parents and adults withhold approval and, at times, love when you don’t measure up to their expectations or embarrass them.  

I did my best to avoid others physically and emotionally when I was growing up. Stayed home when possible. Ran away when it hurt. Was silent and invisible.

By the time I got to college, I was quiet, solitary and depressed, constantly at risk of a meltdown. Everything was a challenge for me. I just couldn’t think or be like the people around me.

My work life after college was more of the same. Very high-performance skills, very poor interpersonal ones. Every day felt like I was teetering on the edge of a cliff as I fought to mask over my differences with long work hours and determined over achievement.

I never felt I could show my real self to anyone. Instead, I faked normal every waking hour with everyone I knew. It became so habitual that the real me quite literally ended up hiding in plain sight. Small wonder it was so hard for others to believe I’m autistic. They had no idea who I really was.

So here I am, 63 years old, trying to introduce myself to friends and family for the first time. I’ve been forward about sharing my diagnosis when I thought it was the key to having a close, honest relationship with someone.

Since my trying to explain anything verbally is a one-way ticket to an endless, disconnected monologue, I’ve written a few follow-up emails to friends who didn’t accept or believe. This actually gave me the chance to focus on how I’m different, on what it means from a practical standpoint and then to put it into words. It may have taken a couple of back and forth emails, but almost everyone has ended up saying thanks for sharing this, I get it now.

Out of all the people I’ve told, only one has made a point of refusing to believe. It’s a bridge he won’t cross and, on a very basic level, feels too much to me like the rejection I experienced as a child. Friendship, like love, should be built on acceptance, not on expectations.

My relationships with other friends and family are works in progress. Yes, they now get it and may be on the lookout for some of the ways in which my being autistic expresses itself. I’m also much more open about being me around them, even when my proverbial kettle is on the boil and I just can’t resist rocking up and down on the balls of my feet. It’s taken me a while, but I finally understand that the only way to truly feel accepted is to know that people are seeing the real me.

C.S. Lewis wrote that the gates of hell are locked on the inside. This was true my whole life before I was diagnosed. It’s not true anymore.

Follow this journey on Lost Words.

Lead photo source: Thinkstock Images

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Chris Bonnello Asks 150 Kids With Autism What They Love Most About Life for New Book

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What do you love most about life? That’s the question Chris Bonnello asked 150 kids on the autism spectrum for his debut book “What We Love Most About Life.”

Bonnello, a former educator who runs the “Autistic Not Weird” community and is on the autism spectrum, compiled the book to help young people with autism feel less alone. “I know from personal experience that autism and Asperger’s can feel extremely isolating,” Bonnello told The Mighty. “It can be a great comfort for young people to learn that they actually aren’t alone in the world – to see the real faces of other children and teenagers who share their life experiences.” The book was designed by Nancy J. Price, whose 15-year-old son also has autism.

Cadence's page of the book.

“What We Love Most About Life” shows the diversity and strength of the autism community, featuring responses from young people all over the spectrum. “Autistic people differ from each other for exactly the same reason that non-autistic people do,” Bonnello said. “We’re individuals, and we get to have our own personalities too. If you want to understand an autistic person, then learning about autism in general is a good start. However, it will never be a valid substitute for learning about the actual person.”

For his book, Bonnello reached out to the “Autistic Not Weird” community and asked parents to ask their children and teens what they love most about life; 150 young people from 20 different countries participated. The responses range from poignant to hilarious, Bonnello said. Of the replies he received, Bonnello said one of his favorites comes from Freddie, an 11-year-old boy. Freddie told Bonnello, “I know I should do the right thing and say family, but I want to be honest and say daydreaming!” “I could have high-fived him for that,” Bonnello said.

A photo showing Asher's section of the book.

In addition to helping kids and teens on the spectrum feel less alone, Bonnello hopes the book will dispel some of the negative stereotypes surrounding autism. “There are lots of automatic negative assumptions about autism. And obviously we don’t want our struggles ignored, but it gets harmful when people define you by your weaknesses rather than your strengths. It leads people to think that autism is 99 percent suffering, which is a damaging stereotype. This book is intended to show people that, regardless of their challenges and difficulties, people on the autism spectrum are brilliantly and beautifully capable of seeing the awesomeness of this world.”

“What We Love Most About Life” is currently raising funds on Kickstarter to pay for printing and other remaining costs. The book will be printed in the U.K. and North America to keep costs low internationally. Those interested in purchasing a copy can do so through the book’s Kickstarter campaign for £10 (about $13 USD).

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child sitting in parking lot next to mom's car

When a Woman in a Walmart Parking Lot Came Over to Us During My Son's Meltdown

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What I learned from a stranger one summer’s day in a Walmart parking lot still sticks with me six years later.

I had on occasion witnessed parents with children having meltdowns out in public and thought I’m glad that’s not me. I would try not to look and give them some privacy to help their child. I would move on with my shopping, happy my three children were behaving, or at least not throwing a “tantrum.”

Then I had my fourth child. With all the love and joy he brought me, also came challenges. By the age of 2 he had been diagnosed with sensory processing disorder and autism spectrum disorder. I became the parent of the child having meltdowns.

When my son was 4 years old, I had to take him with me to Walmart one day. I knew I was pushing my luck. We had just come from the dentist, which for any 4-year-old kid can be difficult but for a child on the spectrum, it is a lot of sensory processing to have to deal with. My son had done OK. We had made it through the dentist appointment. Just one more stop at Walmart, then we would be home.

Things did not go as planned. My son started to have a meltdown in the checkout line.  Normally if this happened I would have made a quick exit from the store and gone back another time. But I couldn’t do that today. My husband was picking up my daughter from camp six hours away. She had broken her foot badly, was in a non-weight bearing cast with crutches, and the cast was not waterproof. The one thing my daughter really wanted to do the minute she got home was shower, and it was my job to get the supplies. I needed to get her a chair that could fit in our shower and plastic and tape to cover the cast.

I endured the looks of disapproving people as I slowly inched up in line as my son was on the floor between me and the shopping cart screaming at the top of his lungs. I made it through the checkout and was able to pick up my son and get out the door. The screaming and flailing continued as I tried to walk to my car. His shoe came off at some point, and I left it in the middle of the road. I just had to get him in his car seat.

My son had Herculean strength during this meltdown. His little body was arching and twisting, and as hard as I tried to calm him and just get him buckled in the car seat, I couldn’t do it. He was screaming, and I was struggling, minivan door wide open for all to see.

That’s when I saw this women coming towards me from across the parking lot. I was sure she was going to tell me she had called the police or at least tell me what a horrible mom I was. But instead she simply asked if she could help me. As I felt the tears well up in my eyes I said yes.

It took the two of us five minutes to get my son buckled in the car seat. As we were struggling together she asked so politely if my son was on the spectrum. I replied yes. She told me how she too has two boys on the spectrum. She had been in another checkout line but had witnessed the meltdown in the store. She told me a man behind her in line had said, “What that kid needs is a good spanking.” She told me it made her so mad that she turned and told the man, “ You have no right to judge them. That boy could have issues you don’t know about.”

I was thinking to myself, wow not only is this women helping me, but she is defending me! She continued on to say that she told her husband, who was waiting in their car with her two boys, that she was going to come over and help me because she could just tell my son was on the spectrum and that I was going to need help.

After we had secured my son in his car seat, she helped put my items in the back of my car as I went to retrieve my son’s shoe. She ran back to her car and came back to my car with her name and phone number. She told me to call her if I ever wanted to get together with her sons. I thanked her profusely, and we went our separate ways.

She became “Melissa-Walmart” in my address book. We met a few weeks later at a playground and laughed as I told her I’d still be in the Walmart parking lot if she hadn’t come over to help me. Her kindness that summer day has stayed with me.

I learned that for all the hurtful looks and comments I would get over the years, there were also people out there who understood the challenges we faced. For the times I saw other parents with a child melting down and I just looked the other way, I could do better. I too could ask if they needed help. Empathy and compassion can go a long way for everyone because you just never know what someone is going through till you have walked in their shoes — especially the shoes that end up in the middle of the road.

Image via Thinkstock.

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Dear Autism: I Wouldn't Be Who I Am Without You

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Dear autism,

Allow me to introduce myself. I’m Liz, and you came into my life at the age of 3. Sometimes it felt like you held me back, but you didn’t. I graduated high school and college, and I got a job at Walgreen’s that I never thought I could get because sometimes you make things overwhelming. But it’s nothing I can’t overcome.

Sometimes you make me feel like a burden to my family and friends because there are certain skills that are hard for me to grasp. But they always remind me how they love me for me and accept me for who I am. Not to mention, autism, that you teach them something new every day.

But autism, we’ve had our cloudy days. I’ve been introduced to bullies, people who did not want to get to know who I am. They shut you down and looked at you as a weakness. But again I overcame it, and now I’m teaching people about you and how you show me the world. Most of all, I show people that you are another learning style.

Sometimes you overwhelm me if my schedule has been changed or I’m hit with bad news, but you know what? I get through my tears and move forward. I learn.

Autism, to me you are exciting, happy, overwhelming, frustrating, and you teach me the most important lessons in life. Thank you for being a piece of my puzzle I call life. I’m thankful to have you. Sometimes people ask me if I wished you away, and the truth is no, because then I wouldn’t be who I am.

Take care, autism, and I’ll see you on this amazing journey we call life.

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On the First Anniversary of My Son's Autism Diagnosis

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To the parents anxiously awaiting that first doctor’s appointment, hoping all those “idiosyncrsies” you see in your precious child, are just that. You’re longing to hear that everything will be fine — that it’s all in your head. That you’re just being overprotective, overreacting or jumping to conclusions.

I was you 365 days ago. 

One year ago, I sat in that sterile neurologist’s office regurgitating information about my son while he threw blocks, cars, and anything else he could get his hands on in the corner of the room.

One year ago, words I never thought would describe my life as a brand new mother were thrown my way — autism spectrum disorder, lifelong care, endless therapy, and thousands of dollars out of pocket. I sat there, attempting to take it all in as I listened to a man, who had just met my sweet son, tell me these things.

But today, I’m drinking a glass of wine and skipping my evening workout. I’m going to sit in front of my TV and “Chuggington” on Netflix while I hold my precious little boy at my side. Because we’ve survived. If you would have asked me a year ago, I’m not sure I ever thought we would make it to the one-year mark unscathed.

To you parents whose children have just received a diagnosis — although this is new territory you’re venturing into, if there’s any advice I wish I received at the beginning, it would be…

Don’t Google. Google is not your friend. The day my precious baby was diagnosed with autism, I immediately went home, locked myself away in my bedroom and Googled. A plethora of information came up in my searches. It was information overload.

It’s OK to feel sad at times. One of the hardest things about this autism journey is getting past the sadness you may feel and the expectations you previously held for your child’s future. It’s OK to feel a twinge of sadness as you see other children your child’s age jumping through hoops in terms of milestones. It’s OK to cry, it’s OK to take time for yourself. It’s OK if you don’t know what to do yet. It’s OK to search for what works best for your family. It’s OK to spend some time by yourself for a little bit, because sometimes that is what you need to find solace, as long as you realize when it’s time to brush yourself off, get up and be an advocate for your child.

Not everyone you meet will be kind. Not everyone you meet will be sympathetic. Not everyone you meet will understand the challenges that can come with raising a child who has limited verbal skills. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry right along with your child when they’re having a meltdown. When they struggle, you struggle. When they hurt, you hurt. When they feel overwhelmed with the world, you can’t help but feel the same. You wish more than anything that the world would just understand your child. The stares. The whispers. The unkind words. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your experiences. Use those unkind and challenging instances to educate those around you.

Some people will all of a sudden become “autism experts.” Post-diagnosis, the floodgates of advice will open. Most mean well, but some don’t. You may be told your child “looks normal.” You’ll be asked if “you’re sure.” You will most likely get the spiel that vaccinating your child “caused” it — or that if you would just give them this or that, your child will be “cured.” Your child will be compared to uncles, brothers, sisters, cousins, friends with autism. Your journey may be vastly different from those around you. What worked for one person may not work for someone else. Remember, every child with autism is unique.

Find your tribe. When the world feels like it’s spinning and you aren’t able to stand still, your tribe will be there to keep you grounded. They will understand the struggles, the meltdowns, the feeling of being alone. Find them. Love them. Cry with them. Thank them for being so freaking awesome in your life. Seek out any and every avenue to meet others faced with the same journey.

Don’t discount any milestones. I remember the joy I felt the first time my son looked at me when I called his name. Or the time he used sign language correctly, after eight months of practice, to communicate his need of wanting more juice. I think we both jumped up and down the day he pointed to the fridge and attempted to say the word “apple” — meaning he wanted applesauce. You will never take those seemingly small moments for granted — and you will feel on top of the world, each and every time they occur. So many times your child will surprise you and exceed and surpass your expectations.

I know it might seem as though you have a huge mountain to climb, and you’re afraid because you can’t see what’s on the other side, but I’m here to tell you that things will be OK. I was you one short year ago. I remember being devastated and terrified of this new life. I won’t tell you it’s been easy. There are more days than I care to admit when I feel sadness thinking of the challenges my child may face later in life. There are more days than I care to admit when I wish I could understand that little boy’s world.

But over the past 12 months, we have been able to find some amazing therapy and a place that feels like home. A place that has allowed my child to thrive and progress, more than we ever imagined possible. We have pulled strength, courage, and determination from places we never knew or even realized existed on days that were especially challenging. We have immersed ourselves in autism groups and become advocates for a child who is still learning to communicate. But don’t let that fool you, because even without words, this little boy is sharing his love of life with the world.

I feel hopeful and confident about our future. I may not have all the answers yet, and there may be more twists and turns on this adventure than I would like, but I realize our life isn’t over. This is just the beginning of our new and beautiful life.

Follow this journey on Life Through A Different Lens.

Image via Thinkstock Images

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I Learned to Celebrate Small Moments After My Daughter’s Autism Diagnosis

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I didn’t even know that I took the little things for granted. After all, I knew what it was like to have a hard life. My two adorable children were already living a life 100 percent more stable than mine. They weren’t sleeping in cars in the winter or eating every three days. So, of course, I thought I was a good mom. But there were so many things that I was about to learn on our journey, and thank God that I learned them before I missed more.

You see, our journey into parenthood wasn’t too bad.  We had our first adorable red-headed daughter later in life. I was already 28. She was cute. She was smart. She was funny. Everything about her being in our life was amazing. 

Then a nearly four years later, we added another sweet angel to our lives. Who knew we would have another red-headed adorable child — this time a son. And, well, he was cute. He was smart. He was funny. He hit all his milestones and did everything like his big sister — right on time and sometimes early. That’s what kids do. They grow up, learn to crawl, learn to walk. So what was the big deal? I didn’t take first haircut photos or celebrate the tooth fairy in grandiose style like some of my peers. I always said it was because I was practical. What’s all the fuss about?

Then we got our third miracle. She wasn’t like the others. So small and fragile. Long dark brown hair. A quiet baby. Honestly, I was relieved. One of the children was more like their dad, the strong silent type. At least that’s how I began the rationalizations. 

Well, milestones started getting missed. But hey, that happens right? And then the doctor started wanting very specific dates about when she crawled, when she walked, when she said her first word. But, you see, why would I track such things? Why would I celebrate such things because they just happen, right? 

Well, no. No, they don’t always just happen. And nine and half months pregnant with our fourth miracle, I sat in a room as they analyzed what my daughter could do versus what she should do, and it became very apparent our daughter wasn’t hitting milestones. I mean she turned 2 years old a month before the appointment, and she had never said Mommy. I tried not to take it personally. All kids get there in their own time. She didn’t say Daddy, either. Well, frankly, she didn’t say much. She counted all the time, in English, Spanish, Korean, Mandarin and Portuguese. Yet, she didn’t say Mommy. But she will get there in her own time, right?

The woman doing the exam was very sweet with our daughter. She was loving and patient as she tried to get her to do things I knew she could not do. Patient and kind as she asked me the questions I didn’t have the answers for while I rubbed my belly hoping the new arrival would come soon. 

Then this woman who had all the compassion in the world for my dear daughter looked at me and said plainly, “Your daughter is at least moderately autistic.”

Wow. Just like that, huh? Just like that our whole lives change? 

Then I did the thing no parent should ever do — I Googled “autism.” I Googled it because I had never heard of it before. I didn’t know anyone that was autistic or had an autistic child.

And, by golly, just don’t do that to yourself. I read link after link and study after study on how my miracle was never going to do this and never going to do that. I read page after page of stories about how my child would be treated by others. I read page after page of all the various early intervention options.

I cried. 

I read about all the milestones my daughter wouldn’t hit. All the milestones that I never celebrated with my first two children. I read more about parenting in those first months after her diagnosis than I had ever read in the first six years of being a parent.

There is a silver lining to this story, though. While I beat myself up over all the things I hadn’t celebrated with my other children, I realized the amazing blessing I had been given. While learning to break down tasks into the smaller steps my daughter needed to learn her way, I started to celebrate small moments. The moments in time, not just the milestones.

I began to be more aware of the true miracles that happened to my children each day. I started to celebrate. Celebrate all of my children. Celebrate the lost tooth — all of them. Celebrate drinking from a straw and then a glass. I was able to celebrate things much smaller than crawling and walking. My life became so much fuller. 

On August 8, 2013, my dear daughter was given an autism diagnosis. Yes, this day changed our lives, but this day also gave me the tools to help my sweet angel to be the best her she can be. And it gave me the tools to be the best mom I could be — to all my children. 

Autism allowed me to learn to celebrate life because life is a miracle. All lives are miracles. I take a few more pictures now. I give a million more hugs, and say “I love you” a billion times a day. 

I learned to celebrate the “cans” and break the “can’ts” into smaller chunks until they become cans. While I do not wish anyone to have this be the catalyst for change in their thinking, I wouldn’t change my sweet angel for anything. She has autism. Without it, she is not her. Without it, we are not the family we are now. Without it, I would have kept missing the everyday miracles in my life.

Autism didn’t end our lives. It was just the beginning of a new path on our family’s journey. I intend to enjoy the ride as best I can. 

Lead photo source: Thinkstock Images

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