A Personal Look at Autism

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Ranked #3,696 in Family, #102,207 overall

He has Autism?

I am the mother of 3 wonderful children (who are all teenagers now! LOL) I am divorced, which happened as a byproduct of raising a child with a disability.

This lens is about my son Jonathan who has Autism. He is my youngest. I want to point that out because many parents are afraid to have children after having a child with autism because of the strong possibility of having another child with autism. Would I have stopped having children if Jon had been my first? I have often thought about it. I may have been scared but eventually I would have tried for more children. If I knew what raising a child would be like ahead of time, I don't think I would have hesitated. It is truly a challenging but beautiful experience.

Unlike many other children out there with Autism, who talk and educate others about how they feel and think, Jon, who is almost 15 yrs old, does not know he has Autism or even what Autism is.


And frankly, I kinda think it's a good thing.

Jon was diagnosed at 2 1/2 yrs old when we were concerned that he had stopped speaking. At this point we had never heard of Autism. I engulfed myself into the internet to find out everything and anything I could about it.

Jon immediately entered the Early Intervention system, getting almost daily therapy in speech, OT, and social skills. We decided on the Picture Exchange Communication System. (PECS)

It is very confusing and scary for a parent just entering the world of Autism and treatments. Nothing, not even the information or therapies, is cut and dried. There are many different forms of therapy and someone is always there to tell you theirs in better, theirs is THE CURE.

I am glad I chose the PECS system for his communication therapy. It worked. Not only can he speak but his vocabularly level is above average for his age. You know what else contributed to this? The computer and the internet. Jon knew how to work on a computer since the age of 3 yrs old. He constantly played computer games like The Living Books series and Dr. Seuss. Each child with Autism is different, this is why there is a whole Autism Spectrum. Jon falls into the higher end but not quite into Asperger's Syndrome.

That's a little background into how we started out. Read on to who learn about who he is today.


For those of you who have followed this lens, I thought I would add a little "update". Please see the new 2009 text.

So who is Jonathan? 

Jonathan is one month shy of his 14th birthday. He is in a special BOCES class and takes a 2 hr ride to school each day. He is advanced in English, Science and Computer skills. He is way behind in Math. He sometimes struggles with his social skills. One of his biggest hurdles right now is "personal space". He stands almost "rightontop ofyou" when talking with you.

One of his favorite pastimes is watching Youtube and Spongebob and Villains Wikipages on the computer. At YouTube, he searches for reused animation in different animated video clips. He can usually find 3-4 clips that all share the same exact scene! At Wiki, he adds to the SpongeBob and Villains pages. He can write out a SpongeBob episode script from memory.

Although many children of Autism cannot handle touch, I have been luck as Jon is almost to the point of overly lovable! My big lovable cuddly bear!

He has a few sensory problems to date. He conquers an issue but it is always replaced but something different. It is his outlet for excitement and frustration. He rocked, which was replaced by jumping and hand flapping, which was replaced by hitting his knee, etc...now he presses his hand on his chin. I know when he does this, it is my cue he is overstimulated in some way.

Things he wants to do/be when he grows up: palentologist, comedian, artist, animator, film creator, inventor, actor.

He wants to travel to California to create and film his own traditionally animated movie.

He can play piano by ear. His art drawings are fantastic. He can draw on the computer just as well as a pencil and paper..no easy feat.

He hates to lose and gets very frustrated when he is playing a video game that he can't win.

His favorite holiday is Halloween. Once the month of June comes along, all the talk is about Halloween coming soon.

Therapies that worked for Jon: PECS, social stories, and visual learning.

Strengths Jon has because of his Autism: music by ear, memory, and drawing.

It's 2009. What's in store for Jon this year? 

In Jon's Words

I thought it would be interesting and informative for Jon to add his own thoughts to this lens. I have asked him the question: What things are you looking forward to in your life? and then handed the computer over to him:

"I was thinking I would plan to make animated movies, record songs in albums, provide character voices, and others. Some of the movies that I want to see are Coraline, Monsters vs. Aliens, and Tim Burton's version of Alice in Wonderland. I love books about Dinosaurs and I'm always looking for new books on Amazon. I've also become very interested in learning about the works of Drew Struzan, a well-known movie poster artists that ever lived. I like to dream about becoming famous. I also look forward to learning how to drive a car. I would someday like to travel to California which is where the people make the films."
---Jonathan 1/31/09

Information on Autism 

Autism is a disorder of neural development that is characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism involves many parts of the brain; how this occurs is not well understood. The two other autism spectrum disorders (ASD) are Asperger syndrome, which lacks delays in cognitive development and language, and PDD-NOS, diagnosed when full criteria for the other two disorders are not met.

Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by rare mutations, or by rare combinations of common genetic variants. In rare cases, autism is strongly associated with agents that cause birth defects. Controversies surround other proposed environmental causes, such as heavy metals, pesticides or childhood vaccines; the vaccine hypotheses are biologically implausible and lack convincing scientific evidence. The prevalence of autism is about 1?2 per 1,000 people; the prevalence of ASD is about 6 per 1,000, with about four times as many males as females. The number of people known to have autism has increased dramatically since the 1980s, partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.

Parents usually notice signs in the first two years of their child's life. The signs usually develop gradually, but some autistic children first develop more normally and then regress. Although early behavioral or cognitive intervention can help autistic children gain self-care, social, and communication skills, there is no known cure. Not many children with autism live independently after reaching adulthood, though some become successful. An autistic culture has developed, with some individuals seeking a cure and others believing autism should be tolerated as a difference and not treated as a disorder.

Things I Learned From Autism 

Things I learned along the way, sometimes the hard way.
  • How to pronounce every prehistoric dinosaurs name correctly.
  • What a beautiful thing it must be to keep your childhood innocence while growing up. I am jealous.
  • Jonathan is probably the happiest person on Earth. Oblivious to his disability, yet happy from the time he awakes to the moment he falls asleep again.
  • I know what reused animation is, and stop motion and computer generated....smile
  • Who does the voice for SpongeBob Squarepants AND pretty much every animated character from every animated movie ever created. Oh yeah and also the date of release for the newest Disney movies!
  • YouTube really does have videos of every posssible thing!
  • Knowing that no matter how mad my other children get at me or stomp around yelling how life is unfair (LOL), I can always find comfort and unconditional love from Jon... always.
  • Your family unit, no matter who it is made of of, is only as strong and close as you make it to be. Put effort in teaching your children the importance of family. It's the glue that keeps everyone together through life's rough times.
  • I never swear. Jon repeated EVERYTHING he heard when younger and now that he knows he shouldn't say swear words, if he hears them he says "What the H..can I say that???" and smiles cause he knows the answer.
  • I know what animals are related to each other, whether its a mammal or animal, and facts of the most obscure!
  • Autism isn't always about routine. I am one of the most unorganized, laid back parents there are. Our days can be so chaotic, one day is NEVER like another. Jon had his hard times but adapted to our ever-changing world. One of his teachers believed that Jon has come so far because I am so laid back. I told the teacher, if I hadn't been, I would be in a nuthouse by now.lol.
  • It isn't my fault. I read about how the extended family might not believe your child has Autism and thought "Wow, thats bad" Well, when it happened to us, my parents and siblings were very unsupportive. They believed the "spoiled and temper" theory over the diagnosed professional one.
  • To get over being embarrassed. During Shrek 2, when the evil fairy godmother died, everybody cheered except Jon..he burst out crying, really loud. I remember sh-ing him to no avail. Oh heck, it has become one of our funniest Jon stories to date! And we still go to movies every chance we get.
  • Most importantly, I have learned to not feel bad or sorry that Jon is "missing" out on parties and sleepovers, going to a normal school etc...because basically he is happy, to him he doesn't know any different, to him, he is missing nothing. I cannot be selfish and want for him. And to me, it's his happiness that matters most.
  • I have been asked as I'm sure most parents have been "Do you want your child cured?" or "Do you wish he/she was normal?" My ex-husband would answer "yes" to those questions. He has never accepted Jon and his autism. For me, Jon is Jon with autism. I cannot imagine any different. And I wouldn't want him any other way.

Books on Autism 

Ten Things Every Child with Autism Wishes You Knew

Amazon Price: $10.17 (as of 11/09/2009) Buy Now

Louder Than Words: A Mother's Journey in Healing Autism

Amazon Price: $10.08 (as of 11/09/2009) Buy Now

The Autism Acceptance Book: Being a Friend to Someone With Autism

Amazon Price: $12.21 (as of 11/09/2009) Buy Now

A Picture's Worth: PECS and Other Visual Communication Strategies in Autism (Topics in Autism)

Amazon Price: $11.53 (as of 11/09/2009) Buy Now

1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders

Amazon Price: $16.47 (as of 11/09/2009) Buy Now

Blog Posts from Google 

Autism Blogs

Connect with others through blogs
Autism Research Update | Psych Central News
A recent meeting by The Autism Consortium gave scientists, clinicians, advocates and parents an opportunity to share the latest information on causes of autism.
Autism Therapy: Dylan Time | autisable
sometimes we forget to discuss the children who don't have autism, but are affected by it nonetheless.
AGE OF AUTISM: Olmsted on Autism: Michael Specter Plagiarizes Paul ...
By Dan Olmsted In his new book ?Denialism ? How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives,? New Yorker Magazine Staff Writer Michael Specter not merely parrots but plagiarizes Dr. Paul ...
Autism Support Network and Hagar International Partner for Autism ...
FAIRFIELD, Conn., Nov. 9, 2009 -- Autism Support Network and Hagar International today announced a partnership to help elevate awareness and provide services to.

Autism Awareness 

Latest stats show that every 1 in 150 children fall into the autism spectrum.

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See what Autism is About 

Celebrate Autism

Become part of the cure-spread the awareness of Autism.

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curated content from YouTube

Places about Autism 

Visit the following links to learn more and connect with others sharing the Autism experience.
Autism Society of America
ASA, the nation's leading grassroots autism organization, exists to improve the lives of all affected by autism.
National Institute of Neurological Disorders and Stroke (NINDS)
National Institute of Neurological Disorders and Stroke's Autism Fact Sheet
Autism Speaks
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
Autism Research Institute
For more than 40 years, the Autism Research Institute (ARI) has devoted its work to conducting research. We provide research-based information on Autism to parents and professional
Autism Today, latest news and resources and books - Autism Conferences in the US and Canada
Trusted resources for Autism and Aspergers related issues.
Overview - Autism, DD, NCBDDD, CDC
Information on autism. Provided by the U.S. Centers for Disease Control & Prevention.
National Autism Association is here to offer information and support to everyone affected by Autism Spectrum Disorders. Autism informational education and advocacy.
National Autism Association advocates, educates, and empowers those affected by autism spectrum disorders.
Auties.org - Autism Employment: Home
Auties.org is for people on the Autistic Spectrum who are ready to dare reach out, open the doors to the community and market their abilities directly to the public..
AUTCOM - The Autism National Committee
Dedicated to Social Justice for all Citizens with Autism
Division TEACCH - Treatment and Education of Autistic and related Communication handicapped CHildren - UNC-CH
Division TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren) as a part of the Department of Psychiatry in the School of Medicine at the University of North Carolina at Chapel Hill, provides services to individuals of all ages with autism spectrum disorders.
Asperger and Autism Information by MAAP Services, Inc. - The Autism Source - A Global Information and Support Network
A nonprofit organization dedicated to providing information and advice to families of persons with Asperger's Syndrome, High-Functioning Autism and Pervasive Developmental Disorder (PDD)
ASD Friendly Autism and Asperger's Syndrome Parents' and Carers' Support Group
ASD Friendly is a UK web based community of parents helping parents of ASD kids.
Center for Autism and Related Disabilities
The Center for Autism and Related Disabilities at the University at Albany (CARD - Albany) is a university - affiliated resource center that brings research and practice together in community settings.
Organization for Autism Research
Putting research to work providing answers to questions for those confronted directly and indirectly by autism
ABC News: ABC News OnCall+ Autism
ABC News Medical Editor Dr. Tim Johnson welcomes you to the OnCall+ Autism Center with easy-to-use advice from dozens of expert doctors on autism spectrum disorders.

Please share your thoughts here 

traceyarcari wrote...

Thank you for sharing your story, I truly enjoyed your lens. I have a son with Autism as well, he is now 7, and was diagnosed when he was 2. He is doing remarkably well. I have done a lot of therapy for him, and a lot of alternative stuff as well. Most people cannot even tell he is Autistc now. I am so proud of the progress he has made. I would like to invite you to read a lens I wrote about a book I read called "Mother Warriors" by Jenny McCarthy. I also share my son's story there as well. Just click on my name or picture to take you to my bio page and the list of my lenses. I have rated your lens, favorited it, and become a fan of yours. And thanks again for your touching story.

ReplyPosted August 13, 2009

SizeTracker wrote...

Thank you for your insights. I recently learned of a new brand of clothing that is designed specifically for children with autism, SPD, and other disorders that cause tactile defensiveness.
Soft: Inclusive Clothing
--Stormy

ReplyPosted April 16, 2009

Nourishing_hope wrote...

Great lens! Jonathan sounds like a wonderful child. I'd love for you to visit my lens on autism nutrition and say hello when you have the chance.

ReplyPosted March 13, 2009

spirituality wrote...

Great way to introduce the topic. I used to teach in a school for special education - there were kids with autism there too.

You might like these lenses:
Books about Autism
Sensory Processing (aka Sensory Integration) explained: with tips on how to help your child.

ReplyPosted January 30, 2009

spirituality wrote...

Great way to introduce the topic. I used to teach in a school for special education - there were kids with autism there too.

You might like these lenses:
Books about Autism
Sensory Processing (aka Sensory Integration) explained: with tips on how to help your child.

ReplyPosted January 30, 2009

view all 18 comments

Links for Various Autism Therapies 

I cannot comment on any of the therapies listed below as I haven't used any but the PECS system for communciation. Become informed helps to empower you as a parent.
Learn and Grow: Understanding RDI with Connections Center
We have learned not only to teach the sophisticated skills which make a real difference, but have developed powerful tools to help parents teach these skills to their children
CCBS: Applied Behavior Analysis (ABA) for Autism treatment and Early Behavioral Intervention
Autism and ABA
Welcome to the Autism Section of the Cambridge Center for Behavioral Studies! John Jacobson, Ph.D. was a tireless advocate for the ABA approach to autism treatment, and we are proud to say he was a member of the Cambridge Center's Autism Advisory
www.gfcfdiet.com
The Official GFCF Diet Support Group FREE Informative Website
SPD Foundation
The SPD Foundation focuses on research, education, and advocacy related to Sensory Processing Disorder (SPD), a complex disorder of the brain.
Research Autism
Charity which provides free, impartial and scientifically accurate information about treatments and therapies for people with autism spectrum disorders.
Pyramid Educational Consultants
Exclusive home of PECS (Picture Exchange Communication System) and the Pyramid Approach to Education. Internationally acclaimed workshops and consulting services to the Autism community.
The Gray Center
We approach the social impairment in ASD as a shared impairment. We work to improve social understanding on both sides of the social equation,helping individuals with ASD to communicate and interact more successfully with the people with whom they live and work

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I have 3 wonderful children. Life has been anything but typical for us. My one son has Autism and my daughter has kidney disease. I'v raised them pret... (more)

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