Stories of Hope

Brothers in Struggle

Autism is not a foreign thing to my family. My big brother John is somewhat low on the Autism scale. He has a very structured life and has lived in a group home since he was a teenager (he is now 47). He has no real concept of relationships or love. Growing up, he always got bullied, called names, etc. He was never accepted.

Then there is me...I always saw my brother and knew that I wasn't like him. In many ways, I felt like I was an ordinary kid, with ordinary likes and dislikes. However, I wasn't like any other kid. I truly enjoyed being by myself. When I was a teenager, my stepmother once said to me, "I wish you would get arrested or something, just so I know you are a normal kid". Was she right? Was I not a normal kid? When I was 22, I met a wonderful woman who later became my wife. Life seemed good, but there was always a problem. She told me that I have always preferred to get lost in video games and being alone than spending time with the family, including our kids. Things got worse. My marriage has suffered almost to the breaking point because I didn't know how to be a husband or father. I try, but I don't know what I am doing. The idea of being romantic, loving, and passionate is something I can't understand. I can give you a dictionary definition, but not much more. Everything I do has to have routine, down to a checklist. I am relatively intelligent - I have a Bachelor's degree and am working on a Master's degree now. However, I only understand structure and organization. It wasn't until my wife, a nurse, mentioned the possibility of me having Asperberger's Syndrome did something click. It was like the last puzzle piece fell into place! I broke down and cried. I haven't been diagnosed yet, but everything I have read about high-functioning autism fits me as if it was written about me. I feel like there is hope!

Anonymous
Port Orchard, WA

Jaclyn

In 2010 we found out that we were having a baby. we were unsure how we felt about this pregnancy as we already had 3 children the youngest being 13 years old and I was 38 years old. Because of my age I was deemed a high risk pregnancy and the journey started anything that could happen in a pregnancy did happen and we didn't know if our daughter was going to make it. at 7 months pregnant she was diagnosed with growth retardation and we knew that she may have problems. at 36 weeks we gave birth to a 3 pound baby girl and we knew right from the start that she was not your average child as she never cried. as she started getting older she was hitting her milestone and was progressing wonderfully and we couldn't be happier as our miracle child was never suppose to survive yet she was proving them wrong.i noticed her lining her toys up and not allowing any physical touching all well still not crying even when she got hurt. at 18 months she lost her voice and was no longer able to speak and the doctor diagnosed her with severe autism. she is now 4 and she fights everyday to learn and achieve what they said she never could.she teaches us new things everyday and we have found new ways to express our love for each other. she is now able to say some words with more words coming everyday and we know this journey has just begun but as she learns so do we and she has an a personality that draws people in and a smile that would melt the world. we are blessed to be able to call this girl our daughter

laura
belleville, Canada

My Non-Verbal Day

“Goodnight, Benson! I love you, boy,” I'd said to my hamster. It was the last thing I said out loud for the next 24 hours.

I decided to go non-verbal for a day. While I’m on the autism spectrum myself, I’ve always been verbal. I wanted to get a glimpse of what it might be like not to be able to speak, as some others on the spectrum experience. Of course, choosing not to talk isn’t exactly the same thing as being completely non-verbal. It was the closest I could think to get, however.

And I made it pretty easy on myself. I didn’t have to work. I didn’t have any important appointments or phone calls to make. I was thinking it would be a really simple Saturday. I was wrong.

I posted online:

“Just a few hours into my day of not speaking, and I'm already getting frustrated. I miss making sound. I want to hear my own voice. Speaking has now turned into this kind of art-form, and it's as though I'm not allowed to create.”

A friend came over to help me clean my room, and then we went out to a store. I posted:

"Finished cleaning my room with a friend. It was really hard! Afterward I went out to the store with her wearing a sign. I've learned that it's easier just not to try sometimes. I won't have a voice, but at least I won't be frustrated as much. It's such a feeling of hopelessness though."

“My non-verbal day isn't halfway over, and already I've 10x more respect for non-verbal people. Yes, my life is hard. But I can't imagine having to grow up this way and live it every day. I totally understand why many people use physical communication (grabbing, pulling, pushing, etc.). I know it's not acceptable, but it's a LOT easier than using an AAC. And when you're already frustrated, you want whatever is easiest.”

By the end of the day, I went to say goodnight to my hamster…and realized I couldn’t. I blew him a kiss and went to bed.

Erin Clemens
West Chester, PA

A Modern Helen Keller Story

My parents had always known there was something different about me- lining up toys for hours at a time, my poor social skills with kids my age, and my serious obsession with studying animals- they just knew there wasn't something right, but they knew they needed to do something to help me get up to par with all the other kids my age. My parents tried to teach me about social cues and how when kids say or do something they expect a certain response from me, I didn't understand why, but their advice worked. My new Mom taught me how to get through my grieving the loss of my biological Mom and Grandfather when I was 5 and 6, respectively. My Dad and new Mom taught me how to share a conversation and that not every conversation had to be about a topic that I liked. My new Mom worked especially hard with me to get me to read, socialize, she made me throw parties, join sports teams, clubs, and summer camps every year, it was pretty stressful for me, but once I got used to it I started to like it. Sometimes all her pushing to get me to get out there made me mad and sometimes we got into arguments over it, but looking back I am glad she did what she did for me. When I was finally diagnosed with Asperger's at 16 we were relieved to finally have a diagnosis that seemed to fit my habits. My parents were told to never expect me to live on my own, or hold a job, or get married, but my parents didn't listen. They knew I could do it. Now at 23 I have lived on my own since I was 18, I have been happily married for 5 years, go to college, and have a 2 year-old normal girl via planned pregnancy, and a small group of good friends. At the time, I wasn't happy with all the things my parents made me do, now I couldn't be happier that they pushed me so much!

Tara Lehman
Norfolk, VA

Different but the same

My name is Graham, I am 20 years old, I am autistic, well I like to say autism isn't me but I am autism :) I have struggled with it for most of my life but I have also managed to get to many milestones with help from friends and family. One of my biggest milestones i'd have to say would of been going off to college and maintaining my current job as a gas station attendant, my managers were really surprised since most people with autism have a difficult time interacting with others but I have learned to push myself through it although some days it doesn't work out as well as i'd like to. I personally couldn't imagine my life living without autism it has shown me so much and has given me such an amazing challenge as well brought amazing people into my life! I was actually offered to go back to the college and help others with disabilities mainly with autism and help them through their classes with how much I impressed the special needs office people I can't remember exactly what the office was called though. For those with autism never let it bring you down, let it shine and show the world how amazing you are! You are capable of so much and others can learn so much from you if they take their time with you!

Graham
Green Bay, WI

Art and Autism

I'm Ondrea and I have Asperger Syndrome.
Asperger's runs in My family. I was diagnosed at 20 after battling with depression and anxiety most of My life. Finally understanding Autism has helped Me understand Myself and improve. I had always felt like I was not a normal person and that I'd never fit in. But I've learned that I'm different, not less.

I'm an artist and I draw comics. So much of My life and My inner world goes into them. They are an escape and I can draw for hours and hours. I hope one day My comics will get a lot of attention and maybe be made into cartoons. But just having someone be touched by My stories would be amazing.
I haven't had many achievements in what a normal person would call an achievement. But for Me, living to the age of 21 is the biggest achievement I've made. After what I've been through, I still find ways to continue and be happy.

There's always a way. Don't give up. If You believe in Yourself You can do anything!

Ondrea
Melbourne, Australia

Jayden

I wasn't ready to be a grandmother and was less than thrilled about my daughter being pregnant at a young age (19), but from the minute Jayden was born, none of that mattered. He kicked way more than what seemed normal, and it was an extra long pregnancy with Jayden being born 9 days late. He swallowed meconium, had low oxygen, and was in NICU for 24 hours, but everything was great after. He wasn't the best eater when breastfeeding, and my daughter soon switched to formula. He spit up A LOT but his doctor didn't seem to be concerned. When in his baby swing, he would hold his head up and to the right in a very odd way. He appeared to be focusing on the moving parts of the swing. By about 6 months, it was obvious he was scared of loud noises and too many people in a room. He constantly rubbed or pulled at his ears, and he hummed the entire time he was eating. His doctor never made the connection when concerns were voiced about his ears. He had a normal hearing test. He exceeded all milestones and walked at 9 months without crawling much first.

After he turned 1, he began lining up his toys and became obsessed with trains. By 18 months he was barely talking and we couldn't understand what he did try to say. He had in-home therapy and was officially diagnosed with autism at age 2 even though we knew well before that. Jayden is 4 now and for the last year has had mostly 40 hour weeks of ABA therapy but is now doing half days each of ABA and developmental pre-school. His diet consists of mostly bread-type foods, and he has had some digestive issues. Other than that, the behavioral and speech therapies have helped SO much! His therapists say they've never seen another child make as much progress in such a short time, and he has become the class clown in group activities! He is one awesome kid, and his Mimi loves him!

Kim Snow
Greenwood, IN

Angel

Our story is a little different than a lot of the one's I have read and yet the same. Our boy is 3 and a half years old. He got diagnosed with autism about a month ago, although we suspected it before that. He was born a day after his due date, he had a little reaction to the pain medication I took. Right when he was born they took him a away for a bit, came back only thirty minutes later and everything was normal. He reached is milestones like he should and some of them earlier. He was walking around 11 months saying mom and dad around 9 months. Around 10 months we noticed a jerking motion, later to find out through an EEG they were seizures. He was diagnosed with infantile spasms at 15 months old. He lost his ability to say momma and dada, and to show expression, he was mallow most of the time, not really laughing or crying. After trying 14 medications and the ketogenic diet he started to babble a little, laugh, cry and now shows a lot of expression. He is full of energy and always on the go, does not like to sleep. He still has seizures, they are bigger and he has to take a nap after them. He is now autistic, because of the loss of brain cells. the seizure portion is now developing into the syndrome called LGS. He has repetitive behavior, wonders around not really knowing what to do a lot of the time, doesn't play with toys, and doesn't talk. He loves to run, climb, jump, swing and slide. He needs help with some of these things. He is a blessing in our house and a very special boy, he has been through a lot, we are just happy to have him. We love him so

Sara
roanoke, VA

My life with aspergers.

My name is Carla Simon and I have aspergers, I was diagnosed at age 4 when teachers at my preschool noticed I had trouble making eye contact and other behavioral issues, when was younger I used to run away and was bothered by loud noises, it didn't stop me from having neurotypical friends though, I used to have sleepovers and everything. I got a lot of therapy growing up which helped me improve a lot. I am now 27 years old and have competed in Special Olympics for 8 years, I drive a car, go to college, and have competed at the Special Olympics national games 2014 in New Jersey in track and field and in Louisville, Kentucky in 2013 in unified volleyball. I don't have any friends now to hang out with just like a lot of adults with aspergers since a lot of my friends went their separate ways, but I hope someday to meet other people like me with aspergers or even meet others who are neurotypical and accepting of people like me. I love going to concerts, bowling, and going to movies. People with aspergers or autism can do anything they set their mind to, we just got to keep trying even if we get bouts of depression or loneliness, someday everybody will accept us for who we are that is my hope.

Carla Marie Simon
Queen Creek, AZ

Nicholas

Here is my story from a grandmother's perspective. When my daughter told me she was going to have a baby, our world became joyful...for she was not expected to be able to have children. I have always loved babies and was so excited to become a grandmother. Nicholas entered our world after a very rough and very long delivery. He had trouble eating from the start and keeping food down a challenge. His memaw and I would keep him frequently to give mom and dad a break. He was fussy, but he was so loveable. He loves to snuggle! As he was getting older he made his milestones until he was about one. As with most stories, people would say to us "boys are slower than girls at reaching these milestones". But, as a grandmother you can just sense that things were not quite right on his little life path. At 18 months he was diagnosed with autism. He is now 3 and in a school that is wonderful for him! He is non-verbal, very picky still at eating, has minimal meltdowns, but will melt your heart with his smile and his cuddles! I feel that I am the luckiest grandparent around. I know Nicholas will become a thriving adult with all the help he is receiving. Anyone that knows me, knows he is the love of my life!! I am thankful for him and cherish every moment we spend together! I love you Nicholas <3

Carla Meads
La Mesa, CA