Ron Sandison and his wife, Kristen

Every person can experience fear and anxiety; it’s part what makes us human. Sensory issues mixed with obsessive thoughts from my autism cause my fears to be heightened.

Five things I fear, which may seem irrational to the typical mind but produce a fight-or-flight response for me, include:

1. Driving long distances in my car.

My savant mind keeps track of statistics. In 2014, there were more than 32,000 deaths caused by motor vehicle crashes, according to the Insurance Institute for Highway Safety, Highway Loss Data Institute.

I fear becoming one of these statistics. My autism also causes me to become easily distracted, and I fear driving out of state and getting lost during the night on a dirt road surround by cornfields.

2. Change in my daily routine.

One of the main characteristics of autism in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders is repetitive behavioral.

I follow the same rigid pattern every work day. I get up at 5:55 a.m. and head to work. But an infant baby has the power to change my rituals. I fear waking up at 5:30 a.m. and driving my daughter to my parents’ house. I fear being late for work due to a new pattern.

3. Meddling with my toy collection.

I have a $6,000 Calico Critter collection kept in unopened stacked boxes and also animal toys from around the world stored in my former bedroom (or man cave) at my parents’ house.

After my daughter was born, my parents wanted to remodel my old bedroom into a nursery. The honey badger came out of the burrow ready to fight. Needless to say, the collection stayed, and my parent’s guest room became a nursery.

4. Abnormal phobias.

When I was 6 years old, we went for a family vacation. During the vacation, we visited a farm in Missouri. The farmer’s wife had mud-stained, long toenails. For the next seven years, I would experience a meltdown with just the sight of bare feet. This phobia kept me from swimming at the beach.

Two years ago, I read an article about a homeless man who froze to death in an outhouse and his body wasn’t discovered until summer. As you can guess, I won’t be using an outhouse anytime soon .

5. Supervisors and job performance reviews.

I’ve experienced both underemployment and unemployment. I fear having a supervisor call me into his office and stating, “Things just aren’t working out here” or “You’re just not the right fit.”

I’ve learned not to allow my emotions or fears control or overwhelm me and instead move forward. When I experience fear and anxiety, I can talk with my family,
friends or co-workers and evaluate if the situation or problem is something I should fear. I also can take three deep breaths to release my anxiety.

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Presents and toys, birthday badges and party invites.

Balloons and banners, fancy dress outfits and homemade cakes.

Silly games of pin the tail on the donkey, musical statues, and “Who’s the best dancer?”

A hot sweaty house full of giddy kids high on fizzy pop and cup cakes.

Class friends having a ball as they fling themselves around on an oversized Minion bouncy castle.

And my son laughing and smiling in the middle of it all.

The playground moms huddled around a table, laughing and gossiping about the antics of the chair of the PTA at last week’s school dance.

Enjoying a glass of wine and picking at nibbles while declaring the diet starts tomorrow.

We air kiss as they leave and walk down the driveway and clamber into their family cars.

I collapse in a heap on the sofa happily content as I watch him delve into his pile of presents. Filled with a sense of relief he has enjoyed all the fuss and everyone had turned up.

This is what birthdays are all about for kids, aren’t they? We plan lavish events so we can boast about having the mobile zoo at the local church hall for our little kiddo’s special day.

Unwritten protocol states we have to invite the whole class to the party, even the ones we don’t really want to be there.

And then on the big day, we pack our kids off to school, wearing a flashing birthday badge and holding a bag of goodies for them to hand out at the end of the school day.

Well, at least this is what I used to think my son’s birthday would look like when I daydreamed about his future all those years ago.

In fact, 12 years ago this very day I was pacing the floor of the maternity ward waiting anxiously for the surgeon to give us the all clear to for my planned C-section.

I was 38 weeks pregnant, tired and hungry. But none of that mattered as we were hours away from meeting our little baby boy. I couldn’t wait to hold him in my arms, and my mind was full of all the possibilities that lay ahead.

Where have the years gone?  I, for one, am not the same person I was back then. And my little baby boy is now 12.

I quickly learned as my son was growing up that birthdays for him wouldn’t look like the images I had created in my mind. Don’t get me wrong, I tried. For many years, I forced him to conform to my idea of what his birthday should look like. I booked the church halls, invited the class and made the cakes.

But my son would cry, he wouldn’t want to join in and he wouldn’t want to open his presents. Then the invitations stopped coming his way, and the moms in the playground didn’t become the friends I had once expected they would.

We had become the ones who weren’t invited, and those that did try to invite us didn’t know what to say to me when I had to make excuses for him not being able to go. When I would ask for the exact itinerary of the afternoon’s events or when he would get upset and cry in front of all his friends, they would look at me with a puzzled sort of confusion that I will never forget.

But I have adapted. I have had to learn that my idea of a perfect birthday isn’t the same as my son’s.

So there may not have been a cake in sight today or a donkey pinned on my living room wall for that matter. But that doesn’t mean he hasn’t had a nice day! He ate his favorite food with his tea with one of his closest friends, played on his PS4 and devoured a whole chocolate brownie with delight.

There was no flashing birthday badge pinned to his school jumper or treat-sized chocolates for his classmates this morning. But that’s OK! He woke up and his smile melted my heart. He enjoyed his birthday croissants and a cup of tea while reading the texts from his family, giggling at the lovely messages they had sent him.

There was no giant bouncy castle or dainty cupcakes today. But I’m OK with that because he was. He has bounced on his trampoline, snuggled in his new sleeping bag and brushed the salty popcorn out of his teeth with his new vibrating toothbrush (for longer than he’s ever brushed his teeth before — bonus!)

I have to be honest with you: The process of learning to accept this difference hasn’t been an easy one. Sometimes I think, “If only,” but then I see his happy face and get such joy from seeing him flapping with excitement as he slides into his new sleeping bag — and those feelings slip away to be replaced with all-consuming pride. His joy of life is infectious at times like this.

So now I find myself giggling at the things I wrap up as presents sometimes — ice pops, popcorn and shaving foam spring to mind. But it’s what my son loves. It what makes him tick, so why not?

And part of my journey as a mother is learning my son’s journey is his own. It’s not mine. I am merely along for the ride. It’s his day, not mine.

So this weekend instead of booking a mobile zoo for the whole class, I’m taking my little man to his favorite zoo for the day, so he can spend nine hours doing what he loves surrounded by his favorite animals — free, happy, flapping and loving life!

Happy birthday, darling boy!

Follow this journey on A Slice of Autism.

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Standardized tests are meant to be challenging, but for students who learn differently these tests can be especially daunting and sometimes unfair.

At Lansbury Bridge School and Sports College, a school for students with special needs in St. Helens, England, most students opt out of taking the country’s standardized tests.

Not 11-year-old Ben Twist though. Twist decided he was up for the challenge and sat down for his SATs, the U.K.’s version of a high school placement test.

Though Twist did not pass the exam, his teacher sent him home with a note highlighting his accomplishments as a student, accomplishments which aren’t measured by placement exams.

The note – shared by Twist’s mother, Gail Twist, on Twitter – congratulates the young man on his attitude and success in completing the exam. His teacher, Mrs. Clarkson, then goes to share a crucial lesson about standardized tests.

“A very important piece of information I want you to understand is that these tests only measure a little bit of you and your abilities,” Clarkson writes. “They are important and you have done so well but Ben Twist is made up of many other skills and talents that we at Lansbury Bridge see and measure in other ways.”

Clarkson then goes on to list some of Twist’s skills and talents including: his kindness, ability to make friends, artistic talent, and athletic prowess among many others.

You can read Clarkson’s full letter below.

The letter reads:

I am writing to you to congratulate you on your attitude and success in completing your end of key stage SATs.

Gil, Lynn, Angela, Steph and Anne have worked so well with you this year and you have made some fabulous progress. I have written to you and your parents to tell you the results of the tests.

A very important piece of information I want you to understand is that these tests only measure a little bit of you and your abilities. They are important and you have done so well but Ben Twist is made up of many other skills and talents that we at Lansbury Bridge see and measure in other ways.

Other talents you have that these test do not measure include

• Your artistic talents

• Your ability to work in a team

• Your growing independence

• Your kindness

• Your ability to express your opinion

• Your abilities in sport

• Your ability to make and keep friends

• Your ability to discuss and evaluate your own progress

• Your design and building talents

• Your musical ability

We are so pleased that all of these different talents and abilities make you the special person you are and these are all of the things we measure to reassure us that you are always making progress and continuing to develop as a lovely bright young man.

Well done Ben, we are very proud of you.

Best Wishes,

Mrs Clarkson

boy holding an american girl doll I shocked a lot of people in the American Girl store when I let my son Gavin pick out a doll. Most of the staff thought we were there just for his sister Kendall and he was there to be a supportive brother.

brother and sister with american girl doll bags

After the new catalog arrived at our house, they both asked if they could get a doll this weekend. I was happy to take Kendall because she had a gift card she’d anxiously been waiting to spend. But words cannot express the excitement I felt when when Gavin asked if he could get a doll too. 

It was only three years ago I sat with this same boy who lined up all of his toys in a row while trying to play. When my husband Doug and I would inquire with his therapy team why he did this, their response was hard to hear. They explained to us Gavin did not understand how to play with toys. To him, lining all of them up or grouping them by colors made sense. Beyond trying to teach him speech, OT, and social skills, they also spent time working with Gavin on understanding what it meant to play. 

When Gavin asked for a doll, it seriously warmed my heart. I wasn’t 100 percent sure he would actually play with it, but I figured we would see how he did at the store.

While Kendall debated about which doll she was going to get, we walked Gavin over to the Bitty Baby section. He immediately grabbed a baby off the shelf and started walking her around. He held her in his arms and hugged and tried to get her to go to sleep.

boy sleeping with his american girl doll

Sure, I could have taken him to another retailer afterwards and purchased a significantly cheaper doll for him, but this is this one he wanted and this moment was worth celebrating! Since purchasing our Bitty Baby doll this morning he has named her Baby Jenny. He has explained to all of us that her birthday is June 9 (she’s one month) and that he is her big brother.

As a society we encourage children to play with toys for several different reasons. There are toys that teach kids and there are toys that exist exclusively for them to have fun. Today I was able to watch Gavin excel in pretend play. Finding him snuggled up with his new baby doll tonight is a moment I didn’t even know I had been waiting for all these years.

His journey continues to surprise me and amaze me every day. I see a lot of Bitty Baby accessory shopping in our future. I can’t wait to sit back and watch his imagination take flight with Baby Jenny. 

When I was growing up I never really had someone to look up to who was on the autism spectrum. For that reason I looked up to people like actor Will Smith, who had been able to overcome obstacles in his life. Early on, I saw the importance of having a role model and the positive impact on my own development. This theme later led me to become a mentor for those with autism.

Many of my mentees thoroughly enjoy pop culture. So when they were having trouble with bullying, I went to the internet to research celebrities who had become bullying ambassadors. The first name that popped up for me was none other than pop-sensation Lady Gaga. Gaga told Rolling Stone magazine that she used to be bullied in high school for having a big nose. Countless peers would call her names like “ugly.”

At first I didn’t know how to make the connection of Gaga to my mentees — until she came out with her smash hit song “Born This Way.”

The song is catchy but also has a positive lyric in it that really resonated with my mentees when I played them the song.

“There’s nothin’ wrong with lovin’ who you are” became something we would discuss in deeper detail.

As I continued to research celebrities, I found out that both Bruno Mars and Adam Levine had been victims of bullying as kids too.

I’ve taken these opportunities to learn more about each of their stories to educate my mentees and include them in talks I give around the country on bullying prevention based on my own experiences being bullied.

At the end of the day my message to our communities has always been the same. Most have been a victim of bullying at some point in their lives, but that doesn’t mean we can’t overcome these obstacles to find the beauty in ourselves. Some people who have been bullied have gone on to do amazing things. That potential is what I want my mentees to see every day. If I can leave them with that, I’ve done my job.

“It is important that we push the boundaries of love and acceptance. It is important that we spread tolerance and equality for all students.” – Lady Gaga

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Last night, my husband and I almost had a fight over something I said to him.

I’m thankful after 27 years, he knew me well enough to know my intent wasn’t to hurt him.

I had a long day after a long two weeks, and I did not think I could do one more thing for anyone. I wanted him to know I needed a peaceful evening with nothing else added in. But the way it came out made him feel as if I thought he always comes barging in thoughtlessly demanding 50 different things from me when he gets home from work. Of course, that’s untrue. It hurt his feelings.

The thing is: I was trying to communicate well.

I thought I was doing fine. I thought I was being pleasant but still letting my spouse know what I needed.

Utter fail!

I didn’t greet him first, didn’t ask how his day was. I hugged him, but my words were, “I need to not have anyone demanding anything from me tonight.”

You’ve had days like that, I know. And it’s important to communicate your needs, so your spouse will know them. But this was not the way to do it.

I was mentally catapulted straight back into Mr. Dilbeck’s seventh grade social studies class. I was distraught because I had been told some boy liked me. The thought apparently terrified me, and I had no idea how to react. Other things upset me that day, and by the time I got to that afternoon class, I was a complete mess. When attendance was taken, in some sort of desperate attempt to get help, when my name was called, I didn’t say “Here.”  I said, “I’m here, but I wish I wasn’t.”

I stayed after class that day to discuss my disrespectful response,with a teacher who turned out be kind once I explained myself, but I learned there are certain forums which you don’t use for expressing personal angst.

At least, I thought I learned.

But I didn’t, fully.

That certainly wasn’t the only socially inappropriate thing I did as a teenager. By far. I rolled off my chair in a Sunday school class one time when I was just about dead with sleep and got my entire class in trouble.

I complained to my biology teacher that she didn’t care that I didn’t understand what she was talking about, and spent time helping her clean up and organize the lab as a way to make up for my misbehavior.

All this fallout was brought on by stressful situations overcoming my social abilities. My friends would ask me, “Why did you do that?” And in hindsight I always realized I should not have, but I never had any reasonable explanation for my behavior.

I obviously learned something from those experiences. But apparently not enough to only have one of those experiences.

There are other things that a neurotypical person may routinely expect to do that I cannot.

Autism takes away my ability to attend concerts and any large, loud or frenetic events. It’s scary and overwhelming.

While I rode my fantastic intellectual abilities to the top in high school and college, there aren’t any good grades to be had working and living and interacting with other people each day in the rest of one’s life. Autism means I cannot have a career which involves change, unpredictability, and random events. I think I’d say waitressing and air traffic control are out. I did work as a camp counselor, and I do have children, but I’m definitely done with the camp counselor days, and in my own family, we’ve all found ways to help each other out by keeping our general life routine pretty predictable. If work is changeable, it’s much too stressful, and while I can handle noise and chaos for a time and in some emergency situations, my tank drains rapidly.

Having autism means the ability to be flexible is extremely compromised. Friends, now you know why it is impossible to get me to do anything at the drop of a hat – except maybe go get an ice cream. If you think of it last minute, I say no. Sorry.

Autism takes away a natural ability to comprehend many of the mysterious ways relationships work. I work hard to maintain friendships. But if I have been mistaken in your level of interest, and you drift away from me, I won’t understand why. I just can’t comprehend how friendship could evaporate.

I still for the life of me cannot determine when people are being sincere. I’ve always been naïve, and while I thankfully haven’t ever been permanently damaged by that naïveté, I still routinely look forward to receiving future invitations that never come. A year later, I will finally realize t the person was dropping a meaningless social nicety when she said, “Let’s do this again soon.” And it’s not like I haven’t been told these kind of comments are almost never meant specifically and actually. I know that. It’s just that when I’ve wrapped up a fun time or an enjoyable conversation, my mind can’t detect any insincerity. Why wouldn’t we get together again soon? I actually spent about a year once waiting for two different people to get back to me about a proposed get together. Sure, some of that was depression, some was being stubborn, but what person really believes after a month has passed, she’d get an actual invitation?

No matter how old I get, I still say the wrong thing, even when I’m specifically trying to be appropriate and adult. Even when I try to communicate my thoughts and feelings, while maintaining respect for the other person’s position, or love for the other person, I fail to do so.

Offending people is the last thing I want to do. I’ve always wanted to be liked more than just about anything.

But sometimes, autism makes that impossible.

Despite my generally asking him to just look it up in the phone book, my husband still occasionally asks me for a phone number he needs. It kind of gets on my nerves when he expects me to provide Directory Assistance. At the same time, I smugly like being able to meet this need for him.

Same with names, places, and directions. For the first 40 years of my life, I’ve been quite good at hauling useful details out of the memory vault.

And I’m not sorry autism gave me that.

I write and draw, especially pencil drawings. My daughter, too, has an eye for small details, which allows her to draw well. I found when I was taking art in high school that my teacher was able to help me learn to draw well primarily because of his skill at walking his students through the process of making the thing appear on the paper in front of the artist. But it was also because I could see the tiny details of the object in front of me. I could see the highlight, the differences in shading on the surface of a vase, the small waves in the hair of a subject.

Autism gave me that.

I could listen to the back-and-forth of banter between friends or the argument of a couple in passing on the street or in a restaurant and replicate that in a short story later.

Autism gave me that.

I had the focus to not let go of a question about what had happened to me. As my doula said, I held on to the “why” of a difficult birth like a bulldog, and I didn’t let it go until I got answers.

Autism gave me that.

I researched what had happened and was obsessed with finding a better way to have a less difficult pregnancy. I succeeded.

Autism gave me that.

I am a loyal friend, who tends not to give up on people and who stays in touch through the years. I try not to abandon anyone, especially people who have been good and kind to me.  Is that such a bad thing?

Autism gave me that.

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