Being Diagnosed on the Autism Spectrum in My 40s

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woman with asperger's syndrome When I was in elementary school, I was diagnosed with speech and hearing problems, and “giftedness” (whatever that is). Since it was 1960s in rural Oregon, there weren’t a lot of resources to deal with things like that. I did have speech and hearing therapy and a supply closet by the nurse’s office that was dark and quiet. I was allowed to hide in it when things got to be too much, which was several times a week. Because of family problems, we changed schools a lot.

If I got agitated, teachers often just gave me a big book and let me go somewhere quiet. That was how I got through school. I was good at taking tests. I got A’s on everything except math and PE.

The real diagnosis came in my 40s when I was recognized as autistic by a friend based on a magazine article he’d read. I didn’t even know what autistic was. I pictured someone who didn’t talk except to memorize calendars and phone books. But of course I went to the internet and typed in the words my friend had found, “Asperger’s syndrome,” and poof, there I was in a hundred other people’s life stories. 

and from somewhere in my brain I remembered that as a kid I did read phone books…

and made my own system of calendars…

and didn’t talk except in TV dialog… 

and rarely to other people…

because they made fun of me for being “weird” and reading phone books.

OK. 

It was true. 

Damn.

For one little minute, I felt the warm glow of camaraderie, discovery and explanation.

And then the rage took over. I would never “grow out of it” or “get my sh*t together.” I thought I would never truly grow up, get real, get a job, get a life, become “normal” enough to fit somewhere. I mean, here I was, 40-something years old with one failed marriage. I’d dropped out of community college because of fear of people. I had two bankruptcies and experienced depression. I’d self-medicated with alcohol. My life felt like it was always on the edge of disaster. I was overloaded and still magically hoping the “phase” I was going through would wear off someday and a regular, responsible adult would pop out.

Here was the proof that it most likely wouldn’t happen any time soon. That odd force I’d always referred to as “the Glass Hand” was autism. It made my body floppy and slouchy. It held me back when I tried to run. It made me walk with a lurch and talk in funny voices. It made me feel trapped in my body. It made the world too loud, too bright, too leeringly social, and too tormentingly mean. It squeezed my breath out in crowds. It dried my tongue and wiped my mind when speech was necessary. It pinched me and caused me to yell and shriek and lash out when the sensory input got to be too much.

Even when people I loved begged me to be quiet.

It was forever.

The formal diagnosis was my mother’s doing. All her life she’d been wondering what was so odd about her firstborn. “She’s just different, that’s all!” she’d say somewhat defiantly to people who asked, “Um… what’s up with the weird kid?”

So I felt obliged to share the new information with her, help her resolve the mystery. She seized on it. She cranked up phone calls and paperwork, engaged the Department of Human Services.

My formal diagnosis was at the hands of a government-appointed psychologist. Mom paid for a second opinion by a private doctor to “make sure” and strengthen the case. Both diagnoses said the same: Asperger’s, anxiety disorder, sensory processing disorder, especially auditory. High IQ, low social skills. 

She’s just different, that’s all.

Sometimes I still don’t believe those diagnoses. I think if I just try harder everything will pull together and just work somehow. Then I laugh.

I am in my 40s. I feel reborn. I have new information, I have a new beginning. I can make a meaningful existence for myself. But not by continued attempts to run a neurotypical script in an autistic brain, no matter how heroically executed, no matter how any times I try, try again. A diagnosis is not an excuse for failure. It’s a clue that the person might need a different approach to success.

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Having Children With Autism Does Not Make Me a 'Martyr Mommy'

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There are few things that really get to me. Working in social media, I scroll through countless offensive and generally awful things on a daily basis. You learn quickly to let things roll off your back or you’ll just feel down all the time. But when I came across this meme while scrolling through my personal Facebook feed, it really hit home. It says, “What if I told you autism parents are just martyr mommies?”

Martyr Mommies meme

Let me be clear: Having children with autism does not make me a “martyr mommy.”

I’m going to address step-by-step why this is offensive because I really don’t think there was malicious intent by the person in my feed. I think we all have things to learn about situations which are unfamiliar to us, so let’s learn together.

This meme says I cannot talk about my children because they happen to have autism. My children are autistic. If you’ve followed our family for any length of time, you know we celebrate our children for who they are. Autism happens to be part of who they are. Every single parent deserves to talk about and celebrate their child(ren). A child’s disability should never limit a parent from talking about their achievements or family experiences. Like every parent, I will choose to protect my child’s privacy; but I will not be silent about my children just because of their disabilities.

This meme says if I choose to talk about our family life, I am choosing to be a martyr. Life with autism comes with joys and struggles. Every single parent of a child with autism can tell you that. I do not share everything (people who would agree with the meme above couldn’t handle the whole picture), but I do share some of it because that is our life. I protect my children’s privacy here while also being honest about certain challenges we face. I have never once considered myself a martyr. I am a mother. My children face unique challenges. I parent them through it. That is the reality of our life, and not once do I ever want a person to pity us for it. That is the exact opposite of what I am about.

This meme says I should be ashamed of my family. According to this meme, I better not share a single thing about myself, my children, or our family life or I shall be considered a martyr. To me, this is the most offensive part of it all. If you think I should be ashamed of my beautiful, awesome family, that’s on you, not me. I celebrate every single part of our family.

My children are my world. They have autism. I am their proud mother. I changed the meme to a more appropriate representation of our lives. You’re welcome.

Autism Parents are Proud Parents

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When a Construction Crew Went Out of Its Way to Give My Autistic Son an Amazing Evening

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A week ago, my husband was stuck in traffic for over an hour just trying to get home from work. He was stuck at a place on his commute that is usually only five minutes or so from our driveway. We’re living right on a busy street undergoing a huge overhaul at this very moment.

Being the social media queen I am, I updated him on all the complaints I saw on Facebook and how long other people were stuck. Being the comedian he is, he sent me texts asking how long I thought he could live on a half-bottle of water and one protein bar.

But he came home smiling (because he has this positive outlook about how beautiful the roads are going to be when it’s done) and joined us on the front stoop, where our son Brian was in his glory, watching construction vehicles do their thing basically right in our front yard. We laughed over how happy Brian was with the whole ordeal when it seemed like the rest of the world (or our little corner of the world) was not too happy. I filmed Brian flapping and laughing and jumping with joy.

And then I shared it along with the caption: “I’m sorry to everyone who is completely annoyed by the cluster this construction is making….but it sure is making one autistic boy very happy that he can sit right on his doorstep and watch bulldozers and dump trucks.”

I sent it along to the Thomaston Rte 1 Project, thanking them for making our little boy happy. I figured in a sea of complaints, they deserved to see someone happy. I figured it was a thankless job the construction workers were undertaking.

It was only a day later that a woman named Audrey wrote me back that she had shared it with the construction crew, and they were so touched, they wanted to meet Brian and make him an honorary Lane Construction team member.

Last night among family and friends, we brought Brian to the construction site to meet several Lane Construction employees. One of the employees called me a few days prior wanting to know about Brian and his autism and what to expect. They went out of their way to understand him, and I warned them that the whole meeting may be overwhelming, and though he loves to watch the trucks, he may be a little scared to go in one.

They had a bag full of goodies for Brian, complete with all the construction gear he would need to be a team member. They even gave him his own hard hat with his name on it.

A construction worker handing the author's son a bag

They asked him if he wanted to ride in the water truck. All week we’d been reading a social story I had made him about seeing and riding in the water truck. At home, he told me he wanted to ride in the truck. But at the site, after seeing it, he clearly said, “No, thanks!”

A man standing near the door of a red construction truck, holding his hand out to the author's son

We all laughed, and the team asked if he wanted to see it go and spray water. He was OK with that option. A team member drove it up and down the road, spraying water, making most of us wish we had rolled up the windows in our car. But after watching Brian flap and jump and laugh over the vehicle, we didn’t really care about the windows.

The Lane Construction men were so patient with Brian. Eventually Brian got in the water truck while it was parked and operated the lever that made the water spray and figured out the horn. After that, there was no stopping him from climbing in to spray the water. He ran around in euphoria watching the water flow from the water truck. Brian’s three biggest loves are vehicles, water and zoo animals. All we needed was a zebra and it would’ve been the perfect trifecta.

They had several other parked construction vehicles that Brian loudly said, “No, thanks!” about climbing in. But again, the team was so great and so patient, and they waited him out. And then, when he was ready and comfortable, he climbed into each (parked and not running) with the best grin on his face.

At some point, I figured we’d get some bored and tired team members. I wasn’t sure if this was more about positive publicity (which is good too, I think they construction workers deserve a break) than providing Brian with an amazing evening.  But we never hit that roadblock. It was clear, minutes in to the evening, that this was truly about Brian. Every person there was so genuinely happy just to be there and to watch Brian. No one was on a time schedule, and they bent over backwards to make sure it was all about Brian and did whatever it took to make him happy.

A moment like this means the world to our family. Seeing Brian noticed and honored for who he is means everything.

Who would’ve thought us sending a simple thank you to the construction workers would lead to them giving Brian the best “thank you” we could’ve ever hoped for? Brian’s smile clearly says it all.

Side-by-side photos of a boy wearing a hat that says Lane and a bright yellow vest and a hard hat

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When My Son With Autism Approached a Boy on the Beach About Making Noises

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We were at the beach yesterday, and my son Evan kept vacillating between trying hard to be extraordinarily good and having a hard time controlling his frustration.

He chose the extraordinary good when he decided to approach a boy about his age and his entire extended family. “Can you please stop making those siren noises? It really bothers me,” I heard him say from across the sand.

Evan proudly ran back to me to announce what he did. Evan also told me the kid hit his inner tube after he asked him to stop making the noises. I knew he wasn’t lying, and I was surprised nobody said anything to this boy about hitting my son’s inner tube. I was also mad when I heard the grandmother say, “What was that all about?” I couldn’t understand what was so confusing about a kid asking another kid to stop making a noise that scared him?

I waited until Evan was out of earshot so I could tell her “what that was all about.”

They saw me approaching, and I watched grandma and some other family members tense up. I never like to have these conversations in front of Evan, but this family clearly needed an explanation because I think explaining autism can help raise awareness and, hopefully, acceptance.

— a person who despises confrontation — was surprisingly calm as I walked over to the family at the beach.

“My son has autism and certain noises really bother him,” I said. I was preparing to add more when they interrupted me.

“He has autism, too,” someone said. “He’s mostly nonverbal, and he likes to make that sound.”

I looked down at the boy, who was sitting in a beach chair, his face obstructed by a wide-brim sunhat, and I saw a 10-year-old boy I would soon learn was named Connor. 

His mom and I high-fived each other because I guess that’s what you do when you meet a stranger who understands your unique experiences raising a child who doesn’t fit neatly into a box. Among all moms of kids splashing in the water and digging in the sand, we knew we understood each other more than any other parent at the lake that day.

We talked briefly, trading stats on our kids like they were professional baseball players. But instead of discussing batting averages, we talked about things like sensory triggers and being nonverbal.

I told her what a big deal it was that Evan didn’t just come over and start yelling at her son for making those noises, and that this was the first time I’ve seen him appropriately advocate for himself.

But as we both knew, moms don’t always have much time to chat when their kids are around. Our conversation lasted less than a minute before Evan required my attention.

We said a quick goodbye, and Evan and I had a little talk about autism, too. I told him that Connor also has autism and that he makes those noises because it makes him happy or it helps him feel better. I told him that Connor, who is the same age as he, may have hit his inner tube because he doesn’t have words and was probably upset someone told him to stop doing something that was making him happy.

I think Evan liked meeting someone new with autism, because when we got home he kept saying things like “autism is awesome” and “I love autism and special needs and disabilities.”

I never expected the conversation to go the way it did. I was prepared to unleash the wrath of a momma bear on this family and then get a half-hearted apology. Instead, I met a member of my tribe. We shared a high-five and a quick talk about our sons. 

Evan may say he loves autism. I love that autism can be everywhere because it makes it easier to find understanding in a world that can be cruel and judgmental. 

It was nice to meet you yesterday, Connor’s mom. I’m so glad you were there to understand exactly what was going on and what a big deal it was for Evan to be the self-advocate he was. I hope the next time someone approaches you about Connor’s noises, your interaction goes as well as ours did today.

The author's son on the beach next to the shore

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John Cena’s ‘Love Has No Labels’ PSA Inspires Me as Someone on the Autism Spectrum

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“This year patriotism shouldn’t be about pride of country. It should be about love.” – John Cena


This was one of the main messages WWE superstar John Cena shared during a new Ad Council ad titled, “We Are America” that aired on the Fourth of July as part of the Love Has No Labels campaign. In the PSA, Cena is seen walking around a small town speaking straight to the camera about what it means to be patriotic.

One of the statistics he said that really resonated with me is that there are currently 319 million U.S. citizens, 27 million of them are disabled (Editor’s note: While this is the stat in the PSA, it may not be factual. In the U.S. 27 million women are disabled, but it’s estimated 53 million adults have a disability in the country) — and almost half the country belongs to minority groups. As someone who currently lives with a disability in autism, I believe these statistics truly show how diverse of a community we actually have. These are numbers I constantly share in my community as a disability advocate.

I’m inspired by John Cena for taking the time out to do this PSA because it shows us all we are not alone in this effort to spread acceptance for people who may be considered slightly different than the norm. I thank him for using his celebrity and platform to support the cause and making a difference for those who may be considered different.

A line in the PSA that Cena said couldn’t be anymore true: “This year, patriotism shouldn’t just be about pride of country, it should be about love. Love beyond age, disability, sexuality, race, religion and any other labels, because the second any of us judge people based on those labels, we’re not really being patriotic, are we?”

For me, this message is not something we should only be promoting as part of Fourth of July but all year round. Not only in America but around the world. He concludes by saying, “Remember to love America is to love all Americans because love has no labels.”

I hope you will remember this message every day because our community will be much better for it.

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What My Employer Did Right When My Son Was Diagnosed With Autism

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Before I became my own boss, I had a great employer. But what makes an employer great?

After my son was diagnosed with autism spectrum disorder, it quickly became clear my work travel schedule was going to be a problem. I had hoped he would eventually adapt, and realized adaptation was not going to come easily to him. Traveling to all corners of the country once a month (or more) was the exact opposite of the routine and predictability my son needed.

I also needed to learn a whole new way of parenting which, with a steep learning curve, required a lot time and focus, which was difficult given the demands of my work.

I needed to not travel and to have more time. In short, I needed to change foundational elements of my job.

A great employer approaches its people from a place of courage — not being afraid of the things that simply happen with employees, things that frustrate and stress so many lesser employers.

A great employer trusts employees as valued partners, starting from an assumption that each desires to do the best they can at their respective jobs.

A great employer treats problems as individual personnel issues, rather than an indictment of the entire workforce. There is the courage to fire people when needed, instead of implementing fear-based policies and sweeping draconian changes because of one person’s bad behavior.

And a great employer will work with its employees in a spirit of compassion and support when normal life events occur.

When I asked for the changes, my employer worked with me to reduce my travel, then to create a part-time position for me.

When I finally gave notice because even part-time was not giving me the flexibility I needed for my son, it was in no way a reflection on how my employer had worked to meet my needs.

There were four key things my employer did when my son was diagnosed with autism:

My employer was creative.

The goal was to meet both my personal needs and my employer’s business needs. My employer thought outside the box to successfully incorporate me into the existing business framework, even while changing basic elements of my job.

My employer was flexible.

My employer worked with me to set a schedule that would allow me flexibility but reasonable time to get the job done.

I was treated with compassion.

Never was I made to feel that this normal life occurrence was any kind of imposition on my employer, as if mine or my son’s needs were trivial or an inconvenience, or that my personal needs somehow made me a less valuable employee.

I was treated respectfully.

Throughout the entire process I was treated respectfully and as a valued employee, even after I left. Through my consulting work I still have a positive and beneficial relationship with the organization.

Courage, creativity, flexibility, compassion, respect were the things that my employer did right, and the things that make an employer great.

Follow this journey on Autism Mom.

Image via Thinkstock.

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