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Sean's Story
Autism is a neurological disorder that affects the functioning of the brain in the areas of reasoning, social interaction, and communication skills. It occurs in about 15 of every 10,000 individuals, and usually appears before the age of three. One of those 15 happens to be my son Josiah. He was diagnosed with Autism Spectrum Disorder (Pervasive Developmental Disorder or PPD) at the age of seven, but little did his mom or I know that he began showing symptoms when he was as young as two years old.
Some of the signs included very little conversation, eye contact or wanting to play by himself all the time. As he got older he lacked social skills with other classmates and I started to notice that he was having problems talking. We just thought that he was going through a childhood phase and didn’t think anything of it. It wasn't until he and his mom moved to Iowa that we found out he had Autism traits. I really didn’t know what to think. At first I was blaming it all on myself, thinking it was my fault (my mom said I was doing the same thing when I was young), but after reading information and going online to get facts, I felt a lot better. I understand it all better now, and we've gotten support for some of the hard things that we face together. Josiah is helping me learn new things everyday!
I personally encourage each of you to give special attention to this disorder during April, Autism Awareness Month, but I also appeal to you to increase your awareness every day about this and other disabilities as they truly affect so many children and adults alike.
Sean Cowans
Information Technology Technician II
Denver Public Library
Rinh's Story
My son Ian was born on March 9, 2002 in the year of the horse. He is a handsome boy with a heart of gold. When he was a baby I would look at him and think to myself…"he is seeing the world in a different way than anyone else."
Ian has Autism. Autism is a complex developmental disability that affects an individual's social interaction and communication. It is known as a spectrum disorder, because it affects each individual in different ways and to varying degrees.
Ian is now four and doing great. We are lucky enough to have access to a lot of skilled professionals to help us on our journey. He is reading and learning addition and subtraction. He also made a friend. He is enrolled in a special pre-school that provides one on one instructions as well as typical peer interactions.
Do I wish he didn’t have to go through this? I look at other children and see how easy it is for them to talk, how easy it is for them to make friends, and yes, it does hurt. Sometimes I wished I could be him so that I could understand him better. I feel sad at times just watching him struggle in a battle to keep out “the world” and a battle to join it.
But now I also see that Ian’s Autism may allow him to be an extraordinary person later in his life. Einstein was probably Autistic. Bill Gates may be too, along with so many historical figures. I was just reading a few days ago about a new book, Diagnosing Jefferson. Thomas Jefferson may have been on the spectrum.
We haven’t lost Ian to the Autism. I believe it has made us cherish and understand him more. Knowing his issues allows us to help him become more and more himself.
Rinh Pham
Material Access Services
Denver Public Library
Karen's Story
I am a 52 year old female who just learned within the past year that I have Asperger's syndrome (AS). AS is an autism spectrum disorder which is also commonly referred to as high functioning autism. Folks with AS don't have the same problems with language development and cognition that autistics do (my IQ is 142), however, most do have significant problems with social interaction. Other AS traits include intensely focused interests, physical clumsiness, hyperacute senses (smell, taste, sound, light, touch) and enhanced ability to see patterns. Folks with AS are often described as eccentric, arrogant or aloof, which is related to an inability to pick up on social cues and to respond as typical folks would. For those familiar with Myers-Briggs personality types, many AS folks test as INTP. Learning that I had AS really helped to ground me, as I always knew I looked at and interacted with the world differently than my peers. Much like the square peg trying to fit into that round hole.
I now feel an inner peace and contentment that was not present prior to my diagnosis. Despite the challenges of having AS, I have a doctoral degree in my field and have built a successful, fulfilling career. I also enjoy the company of a loving male partner and several close friends who truly appreciate my world view and unique personality. There are several wonderful books written by adults with AS that I strongly recommend; Born On a Blue Day by Daniel Tammet, Look Me In the Eye: My Life With Aspergers by John Elder Robison and virtually anything by Temple Grandin. You may also want to check out www.wrongplanet.net, which is an online forum for folks with AS.
Aden's Story
Aden is a lovely boy. A smart boy. A silly boy. He is three years old and can run, jump, spin and climb. He can make jokes about funny things he sees, show empathy, and ask you to play trains with him. But all of these skills are with adults. As soon as other children enter, his skills change. He is less outgoing, confident, verbal, functional and objective. This is because he has Autism, and when he is confronted with a social situation, where other children seem to naturally know what to do, not Aden. He must be shown, step by step, how to have a social interaction. Many times, even the simple task of saying "Hi" to a friend, is very hard. He has a hard time looking at people in the eye and observing others, and therefore misses a lot of what happens around him. He has sensory disorders that make it difficult for him to understand his body awareness with others, for him to sleep at night, and for him to tolerate different kinds of environments and noises.
As his parents, we work very hard to get him the intensive therapy he requires, but it is Aden who is working hardest. At times, it just breaks our heart to see how hard he must work. The progress is slow and steady, but it is progress. This will be his life's work, and we know that one day, when he grows up, this beautiful, capable, loving and Autistic boy will become a beautiful, capable, loving, Autistic AND socially functional man. We, as parents, look forward to this day. But in the meantime, we will try to appreciate, as much as we can, the journey that it takes to get him there.
Nathan's Story
My son Nathan is three years old. He will be four years old at the end of July. Nathan was diagnosed at 2 years of age and his label was autism. Autism!!???!!! At that moment, our life changed and we realized our journey with Nathan would be different. He is not a so called typical child but what is the definition of typical? I realized our lives would change, but I was not going to let autism control our family. I am still Nathan's mother and I love Nathan because he is social, he has a great personality and smile, he shows lots of affection and he loves his family and friends. Nathan has been attending a preschool classroom for kiddos on the spectrum in the Denver Public School System. He also is enrolled in speech, occupational therapy and other therapy sessions. He has improved in many areas but the most important area he has improved in is his big smile when he plays with his sister and friends. We are thankful we have Nathan in our family and if he doesn't attand Harvard so be it...we just want Nathan to be happy, independent and can communicate in society!!
Sha'teeq's Story
My 6 year old son Sha'teeq has autism. He was diagnosed at 4 years old and that diagnosis was able to bring us some answers to a lot of the questions that we had about his development, and his behavior. Sometimes it hurts to look into his eyes because I know that he has so much he wants to say, he just can't express himself the way that other children his age can. When he's having one of his meltdowns, somedays I feel like melting down right alongside him. He has several heroes in the form of his 3 older brothers and 1 younger one. They are very protective of him and love him dearly. My life is probably anything but normal, but to my son it's just a different kind of normal. As I see autism starting to get the necessary media attention and public support that is way overdue, I just try to keep in mind that I wouldn't be the person that I am today if not for my autistic son allowing me to share his experiences and see through new eyes.
Ethan's Story
Ethan is my Autistic grandson. He was diagnosed at 3 years old. We had known he had problems and was different virtually from birth. We had tried doctors and other health professionals all of whom said he was just shy, or he may be deaf. One pediatrician even asked his mother if she was abusing him. His father insisted that she was just looking for something wrong with the child, he couldn't believe that his son had a problem and yet Ethan was so different, never joined in, and he never held eye contact with anyone but his mother and sometimes me. Finally he went to daycare and the staff there picked it up the first day and told his mother where to go for help.
Ethan was such a good baby. He never cried for food or anything else. He would only drink his bottle cold, only eat cold food, which was white in color. He would watch the ceiling fan, (his first obsession) fascinated for hours at a time. When first born he couldn't hold his head up for about ten weeks. We literally had to show him how to do everything. We had to show him how to crawl and sit up, he laughed at everything new he learned to do. He still does. We have had to teach him every new word, every new item he comes in contact with. Mostly now he pretends he knows and when he sees either his mother or me he will ask what something means. It is often something simple which most people take for granted everyone should know.
Ethan is a wonderful copier. Just like he used to echo our words and phrases he also copies everything he draws. He can repeat the same drawing perfectly countless times. His memory is amazing. He knew all his times tables by the time he was 5 years old. He began learning to read at 3 years old when we discovered that he learned to speak words easier if we wrote them and drew a picture at the same time. Then we had a problem finding suitable books so we simply made our own.
Ethan is now 10 years old and has given everyone who knows him including his three younger sisters so much joy. He still laughs a lot but does not like being Autistic because although he goes to a normal school he does need an aide to keep him on task. He doesn't like to be different by having an aide. He really tries to fit in with the other boys but finds it very hard to have a conversation and his body language and emotions don't quite fit. However he is keeping up with his schooling and knows all the rules. His mother is constantly changing things so that nothing becomes an obsession for long. He is very quick to become obsessive. For example when he was little I allowed him to go to sleep on my couch for three days in a row and he also had his shoes on. It took his mother weeks to get him back to going to sleep in his bed with no shoes on.
Ethan still repeats things that happen. He is a wonderful mimic and when he is in his bedroom or in private he will repeat word for word conversations which have happened in his hearing. It is like a video replay. I think it is his way of going over things which have happened or maybe just his way to relax. We have all learned to be very careful in his hearing and also know a lot about what goes on at school and elsewhere.
Ethan could not be more loved. He is a caring and sensitive boy who is just a little different to other people and has to learn things a different way.
Quenton's Story
I have been diagnosed as "mild to moderate autism spectrum disorder." I have 3 brothers and live in Englewood Colorado. I love my mom, and family and am a very sweet kiddo. I enjoy legos right now and have a bedroom full of them. I also enjoy playing outside on the swings, trampoline, etc.. I am involved in a lawsuit against the CDC, FDA, and five pharmaceutical companies. My mom hopes that they will have to give me lots of money so that I can finally obtain all the medical treatments and therapies that I need. Our lives are at times extremely difficult because I am so different than everyone else...
Brian's Story
My son Brian will be 5 in June.
We first noticed him not talking, pointing, or answering to his name when he was around 15 months old.
When we found out that he has classic autism, SPD, dyspraxia, etc, we were confused. Well meaning friends and family members were always looking to "cure" him.
He was (and still is) non-verbal and was not using PECS until just a month ago. We didnt give him enough credit, we now know he understands most of what we say to him.
We were very discouraged up until about 6 months ago. Even after speech, OT, PT and hippotherapy every week for 2+ years,we were not seeing much "progress".
After starting a RDI program with him, and learning how he learns, and changing the way we interact with him, he has opened up.
Everyone has some sort of difference; we need to advocate for all our kids needs, no matter what the disability.
My son is awsome and loving and I thank God for blessing us with such a special loving child. Feel free to visit his web page.
Christopher's Story
My 4 year old son Christopher has autism. I consider us lucky in a way because when he was 6 months old he had a seizure and was referred to PT for low muscle tone. The seizure was the first indication that something was wrong. Through professional observations we were able to get on the dx track fairly early on. OT and ST were next on the list. He is a wonderful child that can make me smile on my worst day. He has an older brother who loves him and is constantly looking out for little brother. He is currently starting PECS and seems to be picking up on the concept of it. Communication would be great. I would love to know what is going on in his mind. Autism is a puzzle but that is okay because I have always loved puzzles. lol
Reader Recommendation
This is an amazing story of Daniel Tammet, an autistic savant who recited pi to 22,514 digits and can articulate how the autistic mind works - his book is called "Born On A Blue Day," 362.196858 TAMMET and his website is http://www.optimnem.co.uk/.
Share Your Story
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General Information and Research
MedlinePlus
Links to a wide variety of information about Autism.
Autism Spectrum Disorders from the National Institutes of Mental Health.
An introduction to the basics, and a variety of publications.
The STAART Network: Studies to Advance Autism Research and Treatment
Autism at the Centers for Disease Control and Prevention
Resources for Parents and Family
TACA (Talk About Curing Autism)
A resource provided by families in California, but much of the information will be valuable for families everywhere. It includes lots of information about treatment choices.
AUT-2B-HOME
This site provides resources and a listserv of families homeschooling their children with Autism. Inspiration and support for parents of kids of all ages and abilities.
Autism Society of Colorado
A wealth of information about Autism and the many resources available locally. (in English and Spanish)
Parent to Parent of Colorado
Connects families of sons and daughters with disabilities or special healthcare needs in communities across Colorado.
MAAP Services for Autism and Asperger Syndrome
A nonprofit organization dedicated to providing information and advice to families of more advanced individuals with Autism, Asperger Syndrome, and Pervasive Developmental Disorder (PDD).
Autism and Pervasive Developmental Disorders Support Network
Practical support and suggestions from parents of autistic children. Includes links to many legal, financial, and educational resources, organized by state.
National Autism Association
Information and advocacy, while funding research for a cure. Many on the Board of Directors are parents of autistic children.
AutismInfo.com
Organized and maintained by parents of an autistic child in Florida. They strive to provide all kinds of information that would be helpful, especially to parents of a newly diagnosed child.
Self-Help and Advocacy for Persons with Autism
Autism Network International
An Autistic-run organization for autistic people.
Autism Movement Seeks Acceptance, Not Cures
NPR article (audio available) about support groups for people with Autism and Aspergers Syndrome. Includes web resources.
Books
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