Real People, Real Stories: Autism Spectrum Disorder E-Book

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Whether you (or someone you love) have just received an autism diagnosis, have been a part of the autism community for a while, or simply want to learn more about autism, this book of stories is for you. This book is comprised of stories from the perspective of people on the autism spectrum as well as parents and other loved ones in the community. You’ll read powerful responses to questions like, “What does autism feel like?” and “Why is eye contact hard for you?” You’ll learn about the importance of autistic “obsessions” and the impact eating issues can have. You’ll also follow the journey of a wife and her husband after realizing he, like their daughter, is on the autism spectrum. You’ll find these stories and more in this e-book. Click below to download our free e-book. 

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The book contains the following stories:

When People Say ‘You Look Tired’ by Lamar Hardwick

Someone Asked My Son With Autism Why Eye Contact Is Hard. This Was His Answer. by Lisa Reyes

When People Wonder If My Daughter Really Has Autism by Jessica Wright

What It’s Like to Deal With Eating Issues as Someone on the Autism Spectrum by Erin Clemens

What a Meltdown Feels Like for Someone With Autism by Emma Dalmayne

When We Realized My Husband Has Autism by Jessica Offer

Autistic ‘Obsessions’ and Why We Really, Really Need Them by Chris Bonnello

My Answer to the Question ‘What Does Autism Feel Like?’ by Lori Sealy

When a Boy With Autism Asked Me What It Was Like When I ‘Had Autism’ by Amy Gravino

If the World Was Built for Me by Rhi

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My Struggle to Find 'Home' as a Woman With Autism and Mental Illness

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I am a woman with a diagnosis of an autism spectrum condition and atypical schizophrenia. Housing has been a significant challenge for me throughout my life. Here is my accommodation story.

Housing was always a challenge for me. I moved out of home at 17, an undiagnosed autistic woman sharing accommodation with other young adults who seemed to be privy to a secret rule book about etiquette which I was not able to read. I went through a new shared house every six months for some years. I would either find the inhabitants of the house irritating but be unable to tell them, or the housemates would get sick of me and move out, leaving me lonely and poor, paying the rent for an entire house and sitting by the phone waiting for it to ring. In one place my housemates stole all my money and moved! Sharing housing wasn’t the most helpful accommodation option for me.

In my early 20s, my life went on a bit of a chaotic trajectory. When I applied for public housing some years later, I was assessed as being the highest level of housing need and was granted a spot on the priority housing list as a homeless person. I was a little surprised at this, but when I realized I had lived at over 40 addresses in the previous few years, I understood why I was granted priority status.

I received welfare benefits for 15 continuous years. The worst thing about this was the complete lack of choice around where I lived. I spent years being sent to live wherever there was a spare place – from crisis housing in a boarding house to a dodgy suburb where stray dogs prowled and I wouldn’t venture outside after 6 p.m. I also lived in a variety of mental health crisis accommodation programs. I spent two years sharing an old mansion full of spiders with 14 others, all young people with serious mental illness. Other residents would drink and use drugs, and their mental health crises were triggering and frightening.

When I finally got my “own” public housing property – which I was expected to inhabit until my dying day – I was filled with horror. Because I was on the priority list for public housing, I had to accept the first property I was offered, otherwise I would go to the back of the waiting list, which at the time was seven years. I thought I could avoid high density public housing because my application included a note from my psychiatrist saying I shouldn’t be in a development more than three stories high. Most of the public housing in Melbourne at that time was high rise, and I really didn’t want to live somewhere like that. Sadly, I was given a place in a huge development of many blocks of 12 apartments. Most of them were inhabited by alcoholics and drug addicts. There were even school bullies who always asked me if I was a boy or a girl. Their derision took me straight back to my own very unpleasant school days. I lived in this place for almost four years.

My awful housing situation was a catalyst in me finishing my education and applying for public service jobs, despite the low likelihood of finding employment with my disabilities. Had I lived in a nice low density housing complex, with some public housing and some privately-owned properties, I would probably never had taken the journey I did. The fact that my living situation was so challenging set me on the path to where I am now. I am happy about that.

I moved to Canberra in 2007 to take up my new job. Shortly after, I bought my little home, known to its friends as “Whimsy Manor.” I love my little flat with all its art and its resident black cat. It took me a few years to appreciate the charms of my little apartment though. I had a number of expensive maintenance issues for the first couple of years, and these contributed to a significant episode of mental illness that lasted form 2010 to 2013. Having been in insecure housing for so many years, my anxiety around my home was intense. I kept worrying the walls would fall down. I had to make a conscious effort to love and accept my home.

I often reflect on how fortunate I am to have this little piece of Canberra which is crammed full of my things. I don’t have to share it with anyone except Mr. Kitty. There is no longer a risk of being robbed by the junkies next door – because I’m fairly certain there are no junkies next door! My home is my supportive place. I know many others in the world are not that fortunate.

There are so many people living in unsuitable housing or insecure housing. It can be a huge issue for people with mental illness, autistic people, and people with disabilities in general. We can struggle in shared housing, and low employment rates mean for many people, buying property is an impossible fantasy. I wish I could buy a Whimsy Manor for everyone who needs one.

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A Half an Hour With My Son on the Autism Spectrum

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Just last week, my brother offered to hang out with my son for a half an hour.

I know this wasn’t easy for my brother. I know he wanted to seem totally nonchalant about the whole thing to make me feel at ease. I know his mind must have been racing…

What if he’s scared of me? 

What if he hurts himself? 

What if he’s totally traumatized by the whole thing? 

All these thoughts and he still offered. What heart. 

As my husband and I left for a 30-minute drive, I started thinking. This simple gift of a half an hour of his time could easily turn into hours, then days/months/years… 

Then my brother would truly know my son, not as someone to be pitied, but as a person with a beautiful soul. One who loves tickles, shoulder rides, playing tag, hugs and kisses. One who lives transparent and free, one who is about as real as a person can get. 

mom and son snuggling

Then, instead of asking me how my son is doing, he could answer for himself. He could honestly say, “He’s perfect” because he will love my son, not for what he can or cannot do, but for who he truly is.

Hope soared in my heart as I saw the glimpse of a relationship forming. This has always been my and my husband’s biggest wish for our son — for him to connect with others, to let people in so they can know and love him as we do. 

So, after the half hour was over, we pulled up to our home.

I was a little anxious as I rang the doorbell.

My brother opened the door with my son at his side. They both had the biggest smiles on their faces. Then my brother said to me, “That was way too short, we gotta shoot for an hour or so next time.”

My heart soared as I smiled the biggest smile right back at them both.

I implore all of you out there, be open, be like my brother and just give half an hour of your time to get to know a loved one with special needs. They may be different, and it may be a bit scary for you, but it can be a life-changing event.

I’m not talking about teaching someone skills — I’m talking about connecting with someone. They may not be able to talk to you, or look at you, or express any outward sense of appreciation, but every time you return, they will feel more and more accepted, more and more comfortable, and they can start to trust you. They can start to realize you don’t want anything from them; you just want to be with them, and they may in turn start letting you in. When you can be present for someone just to get to know them, it changes hearts all the way around. You will start to see that the little things are what makes life beautiful.

Just a half an hour of your time could change a life forever.

And the life changed, just may be your own.

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How Dismissing Bullying as 'Kids Will Be Kids' Hurts Children With Autism

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Over the years, I’ve received countless calls and emails from parents asking for advice in regards to schooling for their son or daughter who is on the autism spectrum. Because of that, I wanted to share a situation I experienced as a child with autism.

I wasn’t sure how it ended up happening the way it did. I was in 4th grade in a special education multi-disability classroom with kids ranging from the age of 6 to 14. I was in the middle of recess when a kid in my class started screaming in my right ear. I started to panic. The noise made me feel uneasy. I told him to stop. I started to get angry. He stopped.

I looked at the substitute teacher, who was staring back at me, looking more scared at the moment than I was. I turned in my chair, away from the boy, and watched while my other classmates were hanging out around me. I tried to focus. I had a hard time getting my thoughts together about what I should do. A scream was directed towards me again. Same guy, but the left ear this time. That was when I lost control.

I stood up and grabbed the chair I was sitting in and pulled it over my head. Now I was the one doing the screaming, at him. The boy’s scream stopped and he looked terrified.

I pushed the chair towards him until he suddenly grabbed it in mid-air. I was now pushing the chair towards him, while at the same time he was pushing it towards me. The boy was about 5-6 inches taller than I was and maybe 2 or 3 years older. My grip was loosening every second of this back and forth, and he was clearly the stronger of the two.

The substitute teacher started yelling at both of us to stop. I dropped my grip and put my hands up to my ears, while the boy got a free love tap with the chair to my right shoulder, until he lost his grip and the chair went flying towards the ground.

I remember the substitute teacher specifically tried at a lighter tone, “You are lucky your real teacher isn’t here, or you would both be suspended.”

I went to the back of the classroom to get away, sobbing. The substitute teacher didn’t say another word about the incident for the rest of the period.

I was pretty quiet for the rest of the day, until one of my best friends came up to me later and said, “I heard what happened. The word is that someone told him you don’t like noise. That’s why he started screaming. He wanted to see what would happen; if he could use it against you.” I rolled my eyes and that’s pretty much all I remember from that day…

After repeated incidents, my parents pulled me out of public school and tried to place me at a private school out of our district, under the “Universal Placement of Students” clause. It was a small, expensive private school for students with neurological impairments. They had to sue our school district to help with funding.

This is a process I’m sure many parents with kids on the spectrum have experienced. They also drove me back and forth 50 miles round trip for the next eight years until I finished high school.

In that private school setting, there were only 160 kids. We all had some letters to describe us and the atmosphere was much better. Also, everyone on staff was trained to deal with students with some sort of special need.

Looking back now, as a 6’3’’ college graduate, national speaker and best-selling author, I think about whether other individuals like myself are still dealing with similar issues today. I don’t expect this to help anyone narrow the choice of where to send a student on the spectrum to school — public, private, mainstreamed, or self-contained. But I realize my experience can be described as a rite of passage for many “special” kids. It is a rite of passage that no child on the spectrum should have to suffer.

Educators and staff saying, “these are kids being kids” is unacceptable. Even though the kids who tormented me may have had their own problems, adults need to be aware and step in.

Inclusion for kids on the spectrum may not always be the right solution.  In my case, I was left in an atmosphere of bullying with no one to help. Public schools are facing dwindling budgets and often aren’t able to provide the protected environment kids on the spectrum need. I was lucky to have parents who found a safe and protective environment for me. Many kids are not as fortunate. I hope by spreading awareness of just how scary our world can sometimes be, people will display more sensitivity and provide the resources for us to feel safe and grow.

A version of this article originally appeared on Kerrymagro.com.

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How Childhood Jobs Prepared Me for Success as an Autistic Adult

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I have the good fortune to be a friend of Dr. Temple Grandin. We have a lot in common. We are both autistic, and we share a very similar youth that played a big factor in our adult life. We both started having jobs at a very early age. Temple often talks about her early days, when her job was to greet guests at the door for her mom’s dinner party, and take their coats to hang up. Yes, it was a job. She was given a responsibility to carry out.

Among her numerous other childhood jobs was the one I, too, did for many years — mucking out horse stalls. In conversations with Temple on the phone, we’ve talked about those days of our teenage years spent shoveling out one stall after another. We both love horses and being around them. It was peaceful and it was also a form of therapy. In essence, it was our occupational therapy.

All of the childhood jobs we did prepared us for the day when we’d start our careers. We were used to working, showing up on time, following orders from a boss, figuring out how to get a job done. It was just a regular part of our life. So when the day came to embark into our careers, we really didn’t have to transition into anything. We were already there.

Temple is world-famous for her life and career. She’s beyond amazing! She inspires everyone, autistic or not. I also hope to inspire people with my story and wisdom. I’ve got a lot to offer.

Statistics show that 85% of people on the autism spectrum are unemployed or underemployed. That’s a staggering number. I see this to be a very complex situation with multiple factors. One of those factors can be changed by parents. Getting your kid working! Every little chore you have them do around the house is a job. Having them help you set the table, do laundry, tidy up; it’s all working. Once they become a teenager, jobs that have more responsibility are in order. Cutting lawns in the neighborhood, helping elderly neighbors, or working at a fast-food restaurant can build the foundation for a child’s future in the workforce.

I can’t remember a time when I wasn’t working. As a young kid, my mom would have me helping her in the kitchen. She’d teach me the art of cooking and baking, and under her close supervision she would give me little jobs to carry out. I would be “assigned” to gather all the ingredients for baking a cake. After I’d assemble everything on the counter, she would stand by me as I followed the recipe and mixed up the batter. Of course safety was always her first concern, so she would use the mixer until I was old enough to be able to safely handle it. Then I’d get to pour the batter into the pan, mom would put it into the oven, she’d take it out, and once cool, I’d put the icing on the cake. I would feel very proud of my accomplishment! I’d be chattering away to her during that whole time, as she was my best friend.

I fell in love with horses around the age of 4. It became one of my Special Interests, one that has sustained my entire life. I desperately wanted to learn to ride. Unfortunately, my parents were unable to afford riding lessons for me. When I was 12, I became a working student at a nearby stable. In return for work, you could earn riding lessons. I became quite proficient at mucking out stalls. The more I shoveled, the more riding time I got. I dreamed of jumping horses over big fences in competition. My dream eventually came true, because by the time I was 16, I was jumping horses over six-foot-high fences in some pretty big shows. It was my hard work and perseverance that got me there.

During all those summers and weekends spent at the stable, I not only mucked out stalls and did other tasks like painting fences, picking rocks out of pastures, emptying trash bins, etc. I was interacting with people, learning to follow orders, knowing the importance of showing up on time, getting a job done, and feeling pride in myself. Little did I know that all of those things were preparing me for my “real” job.

Besides the stable job, once in college I held a variety of other great jobs. I worked as a graphic arts designer at my undergraduate college for the four years I was there. I also worked as a skate guard at a public ice skating arena. I was into ice dancing for a number of years, and because I worked at the arena, it allowed me to get free ice time for practicing. That job also entailed selling tickets at the window for the public skating sessions, making popcorn and hot dogs in the snack shop, and other sundry tasks. Again, these jobs were preparing me for my future.

In 1988 I graduated from Columbia University in New York City with my Master of Science in Nurse Anesthesia and embarked on my now 26-year career as a Certified Registered Nurse Anesthetist. I’ve been working full time ever since, in a job that’s not for the faint-of-heart. The operating room is a very fast-paced, ever-changing, high stress environment, loaded with massive sensory violations. Most significantly, as I call it, I’m floating in an ocean of neurotypicals! I would have sunk long ago without all the life experiences of those jobs I’d done in my younger days. I would not have been prepared to interact with people, situations, and the job itself. To date I’ve done over 50,000 anesthetics, and as I’ve carefully calculated, I’ve interacted with over one million people. That’s a lot, particularly for an autistic person.

My specialty area in anesthesia is neuroanesthesia, which is anesthesia for neurosurgery cases like aneurysm clippings, brain tumors, spinal fusions, and more. It’s highly detailed and complex, just what an autistic person loves.

When I see articles about transitioning from school to work, I wonder why the transition is always such a big deal. I believe work experience should start early and be part of education. Working at a job and all that comes with it should be second nature by the time students graduate. If it isn’t, life will be very stressful, and possibly even unsuccessful. Those 85% of us who are unemployed or underemployed might have had a different story if they were prepared to enter the job market. If you have never worked any kind of job as a kid and teenager, nothing can substitute for that lack of life skills.

Being autistic and working at a career-type job is like going to a foreign country, not speaking their language, and trying to survive. To this day, all these years later, I still feel like a foreigner in a strange land. Yet I’ve built enough experience and “learned the language” enough to stay employed and have a successful career. I know without a doubt in my mind that I would never have made it as an anesthetist if I hadn’t had all my previous jobs.

I hope every parent will recognize the importance of teaching their child the skills to succeed at work. Keeping them sheltered is not helpful, and can set them up for failure. The only way to get skilled at socializing, learning responsibility, and learning to work is by getting out there and working. The more an autistic individual interacts with others, the better they get at it. Therapists, counselors and the like all have their places in helping those on the autism spectrum. But nothing can substitute for real life experiences. Nothing.

Upon completion of school, going out and seeking a job shouldn’t be a first-time experience. Having to learn a new job is stressful enough. If you are prepared ahead of time with years of life experience, you will be able to use all your energy to focus on the job. If you are also having to learn how to interact with people, how to follow orders, and how to get along in the workplace, it may seem insurmountable.

I believe it is a parent’s duty to help prepare their autistic child for the future by giving them chores, then in their teen years getting them out there doing some type of job. Real life experience can only be learned by first-hand experience. Sure, your kid will make blunders. I’ve made plenty, and still do! But I keep going. And they will too. It will be the best “therapy” you can ever give your child. Help them to have a job and be able to support themselves for the rest of their life.

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To the Parent Whose Child Was Diagnosed With Autism Today

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Due to my work as a writer and public speaker about my experiences navigating the world on the autism spectrum, over the years I’ve been contacted by thousands of parents asking for advice about their child’s autism diagnosis. During those times there have been many different emotions I’ve seen from parents, ranging from sadness and uncertainty, happiness about finally knowing the diagnosis, and often a neutral look where I cannot see any expression.

I was thinking about this recently when a mom reached out to me online, telling me that her child was just diagnosed with autism. I asked her some preliminary questions such as “When were they diagnosed?” and the follow up hit me when she said “My 2-year-old was diagnosed with autism today.”

This was one of the first times I ever talked to a parent on the actual day of their child’s diagnosis. She told me it was one of the most emotional days of her life. She told me about her heart breaking for her child. How she had suspected for some time, and now it had finally been confirmed.

Then she said I had inspired her and given her hope for her child. For her to contact me on this day to reach out left me at a loss for words. I took a few minutes to compose myself before following up. For those other parents out there whose child is diagnosed, I hope this message I’m about to share will be helpful for you as well. Here’s what I told the mom.

Thank you for your kind words. Remember that you are never alone in this community, and there are so many people you can rely on. Many of them will have already walked similar roads to yours. Lean on these people. Listen to their stories and most importantly, cherish each and every single day that you have with your child.

We are learning more about autism every day to provide them with supports to see them progress.

I know today may have left you with so many different emotions. My parents had those same feelings when I was diagnosed with autism when I was 4. But my parents were able to get through that day and so will you. You will become a champion for your child and their greatest advocate. I wish you nothing but the best for you and your child in the future.

Your friend,

Kerry

P.S: When you feel up to it, please look through this Tool Kit from Autism Speaks called the 100 Day Kit for Newly Diagnosed Families of Young Children. This guide was created specifically for families of children ages 4 and under to make the best possible use of the 100 days following a child’s diagnosis of autism.

She followed up hours later with gratitude and saying that she would look into the Tool Kit. To this day I’ve been thankful to this mom for sharing her story with me. Stories like hers are why I’m an advocate today. If I can ever be a resource for you like I was for her, you can message me on my Facebook page.

My hope by sharing my successes and challenges on the spectrum is that I can help provide our community with resources they can use to help their children. We can do great things when we support another.

A version of this article originally appeared on Kerrymagro.com.

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Real People. Real Stories.

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