Rising From the Ashes: My Journey With Autism and HSAM

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From the time I was born I’ve always felt autistic and I can remember every day of my life. As a toddler I enjoy organizing the cutlery drawer, reading the street directory and doing jigsaw puzzles. I did that so often I hardly ever played with my more “age appropriate” toys. Cuddling and showing any other form of affection has always been unnatural to me. Whenever someone tried to hug me, I screamed in fright. The same thing happened if I was given a plastic cup which was an unexpected color.

Mum strongly felt I had autism, so at the age of 6 she took me along to get assessed by a psychologist. Despite having virtually all of the classic characteristics, we were told I couldn’t be autistic due to the fact I had a separation anxiety disorder with my mum. They also said my unusual characteristics were a result of stress from my parents’ divorce and I would outgrow them all. I continued to receive psychotherapy for childhood depression, but it was treated as a temporary aid.

I struggled with school and had no extra support in the classroom. Once, I was awake until the early hours of the morning (for three nights in a row) completing an assignment. On the third night, I finally managed to complete it and went to bed smiling because I was so happy with myself. Yet, I sobbed the next day because I was given a detention for not reaching the standard which the teachers called acceptable.

At the age of 15 (in 2005) mum insisted on getting me assessed once again for autism, and this time I came out with a diagnosis. Everyone in the room was in agreement it was unfortunate this had come so late in my childhood and especially school career. Yet, we were told it was common for females to miss a diagnosis because ASD traits can express themselves differently for us.

My early adult years were the hardest of my life. I was depressed because I had no idea who I was or where my passions lay. Due to my depression, I was unable to think about my future at all. Instead, I was intensely fixated on my past.

In early 2011 my parents called me inside the house to watch a “60 Minutes” episode about a group of people who had Highly Superior Autobiographical Memory (HSAM). The people in the show were able to relive every day of their life since childhood in precise detail. I thought that kind of memory was completely “normal” and I couldn’t understand why the story was describing it as incredible.

My mum and stepdad believed I too, had HSAM and asked if it was OK to send the University of California, Irvine — who were studying the people in the segment — an email. I wasn’t expecting a response because I knew our email would be one of millions, we live all the way in Australia, and I certainly wouldn’t consider myself a “lucky” person.

Amazingly, I did receive a reply in a mere two weeks.

After a variety of thorough tests, the UCI officially diagnosed me with HSAM in May 2013. I do most talks with the McGaugh/Stark lab over Skype (in the early hours of the morning Brisbane time). Occasionally I visit them in California and get to enjoy the Universal and Disney parks. Since May of 2016 the Queensland Brain Institute/University of Queensland has been doing a study of my case simultaneously.

My involvement in research has also gotten me into a few media stories. In October of 2015 “Press Association” wrote an online article about my HSAM and autism (in addition to me being so obsessed with Harry Potter that I’m able to recite the books each night to enable me to fall asleep).

Little did I know within six hours that story went viral worldwide, and all throughout the next day media were contacting me from everywhere. “Good Morning Britain” decided to have me featured on their show, so my family and I were told to be at our local television station in just a few hours time. The story aired via a cross-studio broadcast. I was also featured on “Channel Seven News” here in Australia and “Sunrise.”

I must mention here live television is terrifying beforehand but feels great while on air and afterward (much the same as how HSAM research tests and public talks at seminars feel to me).

There have also been a fair few magazine stories I’ve been in, including “Woman’s Day,” “Take 5,” “Logan Magazine” and “Real People UK.” When it comes to newspaper articles, the list is enormous. Many newspapers from around the world picked up on the “Press Association” story, and it’s been featured in articles of — literally — every language.

Most recently I was featured in a “60 Minutes Australia” story alongside another participant in the UCI’s HSAM research study, Markie Pasternak. Part of the epsiode was filmed in my house, and the other half was filmed in the United States. This included footage of me at the University of California Irvine, and also at the new Harry Potter park at Universal Hollywood.

As a career, I blog for a company called “SpecialKids.Company.” In addition to making and selling purpose-made clothes for children with disabilities, they also provide written support for people of all ages with disabilities (including autism). I’m also doing public talks on the topics of human memory, autism and anxiety.

I can be found on Facebook under “Teens and Adults on the Autism Spectrum.” At this moment we’re an online support group where our family shares articles, posts news, and I myself do monthly webinars. We’re hoping our community will eventually grow further so we can expand our support into the offline world. Our content is 100% G-Rated. Though our main focus is to help autistic people in the age groups who get overlooked in mainstream funding.

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Finding My Way as a Soon-to-Be 20-Year-Old on the Autism Spectrum

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I remember wishing time would speed up. I remember thinking that maybe as I got older, things would get a little easier. That maybe my autism would get easier. I thought that things would get better, that somehow I would outgrow my autism. I was 14 then, and I’m almost 20 now. I am older, and I was so wrong. I’ve outgrown some of my routines and meltdowns. Time has helped me “grow up” in some ways, but it’s also set me back some, too. I am a young adult learning her ways in this confusing world, but I’m also a young adult learning how to live with autism, and that in itself has its challenges for me.

I’m not a child anymore. I’m not where I use to be with meltdowns and fits about why I don’t want to go to school. But I still don’t quite feel like the 20-year-old adult my consecutive age says. I’m somewhere in the middle. I’m the young adult who can drive a car and go to the store by herself. But I’m still the girl with autism who needs her mom to take her to the dentist and can’t fully understand the concept of common sense. I’m the soon-to-be adult who doesn’t have to be home by a certain time at night because I don’t have a curfew. But I still can’t stay up past 9 because my body can’t do it and I need to stick to a routine.

I’m neither a child or adult. I feel like I’m somewhere in the middle. I remember those days when I believed I would worry less as I got older. I was wrong. I think about what is yet to come. I hope that one day I will be able to live on my own. Some days, I wish I could be 14 again. Everything seemed so much easier then because I had different struggles to work through.

But time has a way of teaching you how to hold onto what you have just a little while longer if you let it, because soon enough, I might be wishing to come back to these days, too. I’m just trying to find my way in this confusing world. I’m not a little girl, and I don’t feel like an adult. I’m somewhere in the middle, trying to understand and learn my role and what makes me happy.

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Mother holding hand of son, who is wearing a backpack, as they walk together outdoors

The Courage I See Every Day in My Son on the Autism Spectrum

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I see my son with autism spectrum disorder (ASD) struggle with something new, whether it’s surprise thunderstorms, dreaded fire drills or broccoli, every day. What might seem minor to someone else can become a big deal for him. It can take courage to confront the unknown or the uncomfortable. It can take courage to power through it like a boss.

What is courage? The dictionary defines courage as “the ability to do something that frightens one” or “strength in the face of pain or grief.” My son demonstrates this character trait daily. He comes home and tells me, “Mom, we had a fire drill, and I dealt with it!” You have no idea how much courage that takes him. Fire drills used to be more challenging for him. Vegetables are another matter entirely. Texturally, they bug him and they don’t taste so great to him. But when he eats a bit of broccoli, he’s demonstrated courage. He encountered something that causes him grief, and he showed strength by overcoming it.

Courage doesn’t come easily or all the time, but it’s important to celebrate it when it happens.

Does courage mean my son can always power through? Of course not. He’s human! I find it genuinely frightening to go up to a group of people I don’t know and introduce myself. Sometimes I’m able to do it and sometimes I’m not. My point? We need to cut our children some slack when it comes to pushing them outside of their comfort zones. Push too hard, and you’ve caused a setback. Don’t push hard enough, and you maintain status quo. But you do what you and your child feel comfortable with.

Do what you can to make it easy to obtain mastery of goals. Headphones can help with noise issues. Weighted lap pads, stuffed animals or blankets can help with security issues. Don’t expect powering through to happen all the time, but rather wait and enjoy the successes. Because the successes are oh so sweet!

Follow this journey on Embracing the Spectrum.

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The Chocolate Spectrum Just Gave Us One More Reason to Eat Chocolate

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The Chocolate Spectrum is a chocolate shop as well as a place to train and hire adults on the autism spectrum.

Read the full transcript:

The Chocolate Spectrum Just Gave Us One More Reason to Eat Chocolate.

It’s run by Blake Herkskowitz, who’s on the autism spectrum, and his mom Valerie.

Founded in 2013, the company provides training and jobs for adults on the spectrum in Jupiter, FL.

More than 12 individuals with developmental disabilities are part of their program.

The shop offers three different programs for trainees.

The Chocolatier program teaches baking and chocolate making as well as health, hygiene, independence and social development skills.

The Barista course teaches coffee making and social skills for working in both cafes and restaurants.

The last course teaches high schoolers how to make chocolates, pastries as well as other job skills.

Trainees also participate in social events and classes.

To learn more, visit thechocolatespectrum.com.

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My Son Is on the Autism Spectrum, and He's Wonderful in Every Way

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I remember the moment my son Sam was born. I remember his sweet face. His bright eyes. I remember my mom to my left and my husband to my right. I remember what they were wearing. I remember loving the smell of the sterile soap they used at the hospital. I remember staring at him and thinking how unbelievable and amazing it was that he was mine.

Sam is almost 3 now — and I still think that. I look at him and I’m grateful every day that he is mine.

He’s funny. So funny. After his bath, when I’m drying him off, he’ll stand up on the counter, stick his butt out and smack it — then he laughs. I have no idea where he learned this (really, I don’t), but it’s hysterical.

He’s also smart. So smart. I remember when he was younger, I’m not sure exactly what age, but it was young enough that when I gave him the puzzle to play with, I was really surprised to come back a few minutes later to see all the pieces in the right spot.

He’s loving. So loving. He runs to us for hugs. Not just when we come home or pick him up from school, but just randomly because. He grabs my face, looks me in the eye, smiles and gives me a big kiss. Each and every day.

This little boy is wonderful in every way. My husband and I always ask each other, “Do you think other parents love their kids as much as we love ours?” I know, of course they do, but still, it’s hard to imagine. And it’s hard to imagine this child you love so much having anything in their life that makes it harder for them. So, when we learned that Sam has autism, my thoughts immediately went to the world around him.

Sam did not “look” like what I thought autism was. He loves hugs, he makes good eye contact, he likes other kids, he doesn’t really have many sensory issues. I already knew him, so while it was a bit of a gut punch to hear someone say those words out loud, my first worries weren’t about him or his outcome. I was worried about everyone else, how he would be treated with this stigma attached to him.

For the first few months, I was obsessed. I read all the books, read all the blogs, the comments, Googled every last detail, attended conferences, asked a million questions. After all that, I remembered learning the important lesson I did while pregnant… that the internet is just a big rabbit hole. If you want to find something to confirm your beliefs or suspicions or fears, you will and most likely the outcome will leave you with a terminal condition on WebMd at 2 a.m. So, I stopped… and immediately felt much better.

My husband was a big part of that, too. One day, he just said “Enough.” “There’s nothing wrong with Sam.” That’s what he said, and not in the denial kind of way. The obvious kind of way. We feel like the luckiest people in the world to have him. He has some delays, some quirky things about him, maybe some other stuff that will come up — and there’s nothing “wrong” with any of it. It’s what makes him him. Even through my obsession (which my husband kindly calls diligence), I never once wished Sam were different. I wanted to help him be the best he could, but not different. We never felt sorry for ourselves, there was never any big crying moment. We have a pretty healthy sense of perspective. That has made a huge difference. We decided we’ll handle things as they come and not take life so seriously.

I know it’s not all rainbows and unicorns. I know the daily struggles for many families can be hard. Some days Sam is just like every other kid, but then there are other days, when I can see that he gets a bit lost in himself. When he paces back and forth. When he won’t respond to his name. When I remember that my nearly 3-year-old child still doesn’t put words together. Those days are harder.

When I read about yet another kid who was bullied, or one that sat and waited while no one came to their birthday party. That’s not just a problem with kids; I believe that’s a problem with what their parents teach them. When I hear how kids in public schools are falling behind, inundated with homework and overwhelmed. When I learn how the basis of Common Core is that students now must be able to not just answer the question, but explain exactly how they got the answer, which can be particularly hard for children with ASD. That is all of our problem, whether your child is a typical kid or not. When I see the “free” options for kids with ASD that so many parents rely on that are failing them. When I see how much is not covered by insurance. When they tell you that early intervention is crucial, but after eight months on a wait list, we still can’t get a behavioral therapist to help us. When I visit special preschools for him that aren’t bright and fun, with hallways lined in art work. They’re basically converted homes or office spaces with used, donated toys. When the “good” school that everyone is trying to get in basically tells you you will never get off the wait list. Those are the days that I worry for him. It shouldn’t be like that. Not for him. Not for any kid. Not for something that may affect as many as one in 68 children.

Sam is going to do wonderful things. I can see it. This little boy who loves music and dancing, loves painting, loves cars and trucks, peanut butter and jelly, bubble baths, books before bed, sidewalk chalk and cartoons. This little boy who is afraid of the big tractor from the movie “Cars,” won’t eat his veggies, pouts when it’s bedtime and loves gummy bears. He’s just like any other kid in those ways.

Sam goes to preschool and has great teachers. He has an awesome speech therapist who works with him on his level. He will hopefully soon be approved for a behavioral therapist to help as well. He has grandparents nearby, and he has my niece, his best friend, across the street to be his sidekick. He has a little sister, who at only 6 months, I can already tell will be a fun and loving companion. He has parents who are able to devote a significant amount of time and attention to making up games to help him speak and focus. He has my niece and nephew, my cousin’s daughter, my friends’ children, all of whom are around his age. I believe they’ll be his first friends and forever allies. He has an army of family and friends who love him tremendously. Sam will do just fine. He will reach his full potential, whatever that is. But not all kids have access to these things, and that is heartbreakingly unfair. Not to mention those great teachers and therapists who will help him reach his full potential, who go above and beyond what they need to…their salaries, in my opinion, don’t justify the work that they do.

I thought I knew about autism…until I had a child with autism. There is so much work to be done. I will fight for those things for him — because I’m his mom, because I love him, because he deserves better. And maybe that you can now say you know a child with ASD and that you know there are awesome kids not getting what they need and not being treated how they deserve to be treated — you’ll fight for them too.

Follow this journey on Why? How? Car!

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Panera Bread Is Cooking Up Autism Awareness With Cookies

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Panera Bread is cooking up some autism awareness out of its Cincinnati-based locations. Starting Monday, 21 Cincinnati-based Panera locations will offer shortbread cookies featuring a blue puzzle piece to raise awareness and funds for autism-related endeavors.

According to Cincinnati.com, 100 percent of the autism cookie proceeds will be donated to the Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital Medical Center. The donations will help expand the center’s early intervention program and provide sensory-friendly training to staff members of local public institutions such as museums, theaters, and other places of recreation.

The awareness effort is part of “Pieces of Hope for Autism,” an advocacy event created by Covelli Enterprises in 2011, the same group which owns over 300 Panera Bread franchises. Over the past five years, Covelli Enterprises says it has donated over $300,000 to the Cleveland Clinic Children’s Center for Autism through its fundraiser, Fox8 Cleveland reports.

The fundraiser starts Monday, April 3 and ends Sunday, April 9.

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