Repost from Autisable: Dr. Hans Asperger

Hello everyone! Here is another article I've been waiting to re-post for quite some time now. It was written by Alan Stokes on the Autisable website. If you are not subscribed, I highly recommend it! This is a wonderful article about Dr. Hans Asperger. For those of you who are not big on the history of autism, this is one person you should know about. Knowledge is power... it is crucial for parents/caregivers to be educated on issues related to ASD in order to better understand your loved ones. I hope you like this one!
Blessings!
DC

• Autisable's Weblog

Saturday, 24 March 2012

• Autism Light: Hans Asperger

  
  

  
  Today we journey to Austria where we meet a giant in autism history. He is the physician and researcher responsible for first diagnosing the form of autism that would become known as Asperger's Syndrome. While our hero did not live to see that the fruit of his research on autism would travel around the world and that in his honor his name would be used in a diagnosis of the form of autism he studied, during his day he was dedicated to being a light for autism and was motivated by a love for children who had high functioning autism. 

  
  
  Dr. Hans Asperger was a pediatrician and child psychologist from Austria who worked at the University Children's Hospital in Vienna. He was born near Vienna, Austria on February 18, 1906 and died on October 21, 1980. The form of autism known as Asperger Syndrome was named posthumously after Hans Asperger. Hans Asperger is an Autism Light because his work brought awareness to the form of autism that would eventually be labeled Aspergers (after his death). Hans Asperger will be added posthumously to the Autism Light Memorial Roll today.
  
  Family: Hans Asperger married in 1935 and had 5 children (Source). 
  

  • Three of Hans Asperger's offspring took careers in agriculture and two became physicians (Source).
  • Hans Asperger, Jr. who works in the agricultural field said, "My father always said, 'I love the children' (Source).  Mark Blaxil and Dam Olmsted wrote an article for Age of Autism where they discuss their experiences with meeting Hans Asperger, Jr. in August, 2008.
  • Maria Asperger-Felder is a child psychiatrist in Switzerland who works with children with autism like her father did.

  School: Hans Asperger and Sister Victorine had opened a school for children with autism near the end of World War II. Much of Hans Asperger's early work was destroyed when the school was destroyed by bombs near the end of the war. 
  
  Research: During his lifetime Hans Asperger wrote over 300 publications of which a significant portion was based on his findings related to autism (Source). Hans Asperger provided the first definition in 1944 of what would later be called Aspergers by describing the condition as "a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest, and clumsy movements (Source)."  He also called his patients "Little Professors". A summary of an article he wrote in 1944 is at this link. After publishing this landmark study on autism the University of Vienna gave him a permanent tenured position.
  

  
  Quotations: Here are some beautiful quotations by Hans Asperger about autism:
  

  • "Not everything that steps out of line, and thus 'abnormal', must necessarily be 'inferior' (1938) (Source).
  • "It seems that for success in science or art, a dash of autism is essential" (Source).
  • "Able autistic individuals can rise to eminent positions and perform with such outstanding success that one may even conclude that only such people are capable of certain achievements (1944) (Source).

  Language Barriers: Because Hans Asperger did not write in the English language, it took many decades for his work to be translated and reach the mainstream of English speaking areas. A British researcher named Lorna Wing first coined the phrase "Aspergers Syndrome" in 1981 (Source).  By the 1990's Hans Asperger's work had been translated sufficiently enough to take root on an international level. 
  
  

  International Asperger's Day: International Asperger's Day was held on February 18, 2012.  The annual observance is set to coincide with Hans Asperger's birthday. Kathie Harrington wrote a post at her blog on the observance of this day in 2012.
  
  Social Media: A Facebook page has been set up on Hans Asperger that can be liked at this link.
  
  Further Study: To read more biographical information about Hans Asperger visit these online websites.
  

  • NNDB Page
  • Wikipedia Page
  • Wikia Page
  • Whonamedit Page

  Hans Asperger will be remembered for bringing awareness to what is considered the high functioning side of autism or commonly called Aspergers. Today we honor Hans Asperger for his research on autism and helping point out the different expressions of autism. As someone has said, if you meet one person with autism you meet one person with autism. We remember Hans Asperger's light for autism in the month of his birthday and throughout the year.
  
  
  

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A Touching Reflection by Kelly Langston

After a sudden rush of writing, I've decided to take a break and dedicate some time to feeding my soul. I have several devotionals sent to my email box each day. When I read a really good one that I like and want to share, I save it with hopes of sharing it here. Well, I've accumulated a few and it's time to start sharing.

This is a touching reflection by Kelly Langston, author of the book Autism's Hidden Blessings (see link below). It came via the Proverbs 31 Ministries. It is a beautiful story that I wanted to share. There is one thing I'd like to mention before you read it: I am one who does NOT see ANY child as "broken," but for today I am willing to let that go to share the rest of the story with you because, overall, the message is quite beautiful and really a blessing.

{getting my soapbox} I will always say that my son is not a puzzle that's missing a piece. He is exactly like God meant for him to be. Sure he has a lot of areas he needs to work on and improve, but doesn't everyone? I have worked for almost two decades with a WIDE range of children with special needs and to say they are "broken" is not very nice, it's actually inappropriate. Every child has potential to grow if we take the time to get to know them and tap into their interests. Every child, no matter what level of ability, wants to be loved... if they know you love and accept them, they will reach for the stars while you hold their hand! The first step to peace in this puzzle is acceptance and unconditional love no matter what the circumstances. I'll take "diamond in the rough" as opposed to "broken." OK, now that I've clarified that fact, here is the devotional:

March 30, 2012

“Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!” 2 Corinthians 5:17 (NIV)

Broken.
It was now broken, with an asymmetrical flutter to its wings that moments before lifted the butterfly in a dance around the church lawn.

The butterfly wasn’t what first caught my eye though as I stood in line to pick up my son, Alec, from a day camp for special needs children. It was the boy with autism that first captured my attention. He was tugging on the arm of his caregiver with a brawny strength, roughly pulling her this way and that. As I watched the two in their strange dance, my heart ached for the boy just as it does whenever I see a child with autism. A familiar feeling rose in the pit of my stomach. It was the same one I felt when I didn’t know how to reach my autistic son in his younger years. I’ll never forget how hard and long the days could be.

Lost in my memories, I was more than happy when the butterfly caught my eye. As I watched it, in one quick swoop-and before his caregiver could stop him-the boy’s hand captured the butterfly in a clenched fist. She pulled it free from his grasp and I watched fragile wings fall to the sidewalk. The butterfly fluttered for a few moments before dying.

Isn’t it strange how something so simple can hit you so hard? Grief rose in the back of my throat, but I wasn’t sure what hurt me most. Was it the brokenness of a boy who longed to touch something beautiful and carefree, only to crush the life from it? Or was it the thought of how quickly something so lovely can die? The vivid scene stuck with me all night, broken wings falling to the ground.

The next morning, I walked with Alec up to the church for another day at camp. I stepped onto the sidewalk behind a little girl with Down Syndrome. Without a care in the world she sang, and when I heard the words, I stopped in my tracks:
“I am a beautiful butterfly! I am a beautiful butterfly”

With each light step, she twirled and sang this little song. I realized then what God was showing me.
Yes, Lord, I get it! These children are like that butterfly. They are full of beauty! Full of grace and wonder, and even so, they are broken. But oh, how lovely and special they are to You, Lord. And how precious to behold one single moment of the beauty that lives within them!

As a parent to one of these broken, beautiful butterflies, it is a privilege to see God carry him through painful days. And I know I’m graced to be touched by the beauty that exists in brokenness. To feel the loss of what might have been, the crush of overwhelming need, and the Divine Light that runs through it all and makes it worth our efforts.

Alec’s teenage camp buddy leaned down to greet my son with a high five and a smile. It was then I noticed the counselor’s shirts with the words “I am a New Creation” on the front and on the back was the week’s Bible verse:
Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! (2 Corinthians 5:17)

Like the butterfly, we’re all broken. But, praise God, there is great beauty within our brokenness when we allow God to carry us through the pain. Better yet, we are new creatures with a future and a hope of eternity—unbroken—in Christ. One day each broken body will be resurrected to a new beauty unimaginable in this life.

Kelly Langston
Reflect and Respond:
Scripture is filled with stories when God chose people who were overlooked by others to do great things for Him. Never underestimate God’s power to use your child to bring Him glory. God has a marvelous purpose for your child!

What is one weight of life you can trust God with today? Lean completely into His care. He did not spare His own Son to demonstrate the extent of His love. Knowing this, you can be certain He will honor every one of His scriptural promises for you! Take heart, your God is for you.

Power Verse:
Revelation 21:4, “He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” (NIV 1984)

© 2012 by Kelly Langston. All rights reserved.

A Poem About Us

Hi everyone! Here is a poem I wrote this week. I feel it was truly divinely inspired. I am very proud of it, yet kind of reluctant to share it as feels so personal, but I know there are those of you out there who need to read this message.

I had been reflecting on how far God has brought our little man and our family since this point one year ago. From a non-verbal, aggressive, tantrumming and disconnected little ball of energy to the verbal, sweet, social, loving, kind, potty trained little guy we see today. Yes, we still have a long way to go, but NO ONE could have paid me to believe a year ago that we'd be here today. I have seldom shared with others that intimate moment I had with my Lord early last summer when I saw my baby boy at his worst point. As his mother I felt completely out of control and out of ideas/strategies to help him and my heart was breaking. It was at that moment that I cried out to the Lord and asked my little guy to talk to Jesus and we asked Him to help us... together. That was the day things started to change. Some day I hope to get my book published to you guys can hear the whole story. For now, I give you these words from the bottom of my heart.

I hope at least one person can identify with my feelings. May they be a blessing in your life!
DC

In Just a Year...
by DC

A year ago today... Our nightmare was beginning
A year ago today... Our path seemed so unclear
A year ago today... Dreams and hopes were slowly fading
A year ago today... God’s voice was hard to hear
A year ago today... Friendships began waning
A year ago today... My heart was filled with fear
A year ago today... Our baby boy was changing
A year ago today... My heart began to tear
A year ago today... Bumps and bruises were hardly fading
Yet, A year ago today... I learned that God is near.

A year ago today... My home became my fortress
A year ago today... I could not find a friend
A year ago today... We wondered in the wilderness
A year ago today... I thought this would never end
A year ago today... The fake smiles hid my bitterness
A year ago today... I sought my heart to mend
A year ago today... I searched for ways my pain to harness
A year ago today... I prayed that fear to the depths I could send
A year ago today... I searched for peace and happiness
A year ago today... I learned the rules to bend.

A year ago today... No hope left for tomorrow
A year ago today... No hands to show the way
A year ago today... I swallowed all my sorrow
A year ago today... I let the chips fall where they may
A year ago today... I sought for strength to borrow
A year ago today... I humbled myself to pray
A year ago today... No longer was I hollow
A year ago today... His hands showed me the way
A year ago today... I remembered whom I should follow
And a year ago today... I heard His sweet voice say:

A year FROM today... This will all just be a memory
A year from today... This will all seem far away
A year from today... This will be a part of history
A year from today... This will help YOU lead the way
A year from today... I will use this for My glory
A year from today... I will give you the words to say
A year from today... You'll no longer have to worry
A year from today... You’ll no longer fear each day
A year from today... Your son won’t be a mystery
And a year from today... With thanks I will hear you pray.

A year from today... Through Me your confidence will show
A year from today... Into my arms you’ll learn to run
A year from today... A whole new life you’ll come to know
A year from today... A new chapter will have begun
A year from today... You’ll have new seeds you’ll need to sow
A year from today... My work will not yet be done
A year from today... New dreams will blossom, new plans will grow
A year from today... The dark will be replaced by rays of the sun
A year from today... Joy and peace you’ll learn to stow
A year from today... You’ll know Me, my Spirit, my Son.

A year from today... Not ever will I your side desert
A year from today... You will not falter or be fazed
A year from today... You’ll feel your pain into joy convert
A year from today... You WILL look back and be amazed
A year from today... Words of love your son WILL blurt
A year from today... You will press on, no longer dazed
A year from today... Back to peace your life will I revert
A year from today... Into My heart you will have gazed
A year from today... Perfect peace will have healed your hurt
A year from today... You’ll shout for joy with your hands raised
A year from today... All around will hear your voice assert
That a year from today... Across the land My name forever shall be praised!

Identity... the way I see it:

I hope everyone felt enlightened by the parts I shared from Mrs. Eustacia Cutler’s work in my last post. Here is what I took away from that experience:

Each of us in our beautiful little family of three has our own identity. Our family unit has its identity as well. Autism forces both the individual and family identities to change, but it should not absorb them. It is SO easy to get sucked into the world of autism that both the individual and the family’s identities can get lost. Eustacia often speaks of “the sacrifices” her other children made in order to accommodate Temple’s needs. It's an inevitable process that can't be avoided or denied.

Kanner described the tendency of individuals with ASD towards “self isolation” in his publication   CHILDHOOD SCHIZOPHRENIA SYMPOSIUM, 1955. 6. EARLY INFANTILE AUTISM, 1943-55 (American Journal of Orthopsychiatry Volume 26, Issue 3, pages 556–566, July 1956). Dr. Kanner went further to describe, “the extreme nature of their detachment from human relationships separated the appearance and behavior of these (autistic) children in a fundamental fashion from other known behavioral disturbances,” (p. 556). To read more, visit http://onlinelibrary.wiley.com/doi/10.1111/j.1939-0025.1956.tb06202.x/abstract

Regular exposure to “the real world” can help draw the individual out of their own world of autism and keep the family grounded in their own identities. In order to remain grounded outside the world of autism, both Temple and Eustacia stress the importance of FORCING individuals with autism and the family against the gravitational pull of the safe comfort zone—within reason, of course. At the conference, a grandmother stood up to ask Eustacia this question: 

“I want to take my grandson with ASD to so many places but he just freezes and won’t go.” 
Eustacia’s answer, “You HAVE to keep trying. Even if you just get him in the door, it’s progress!”

Temple frequently refers to the incredible amount of “typical” activities she was exposed to throughout her lifetime: school, neighborhood play, church, and jobs even as a pre-adolescent. She credits these as the basis of her long-term successful integration in the "real world." One of the many jobs she had included, of course, caring for the animals on her aunt’s ranch. Temple didn’t WANT to go to the ranch to begin with, but her mother gave her no option. No one could predict it would turn out to be a life changing experience for her: a gate to a future few could have ever imagined for the ‘autisitic’ girl named ‘Temple.’

I believe the process of drawing the child (the parent AND the family) out of the world of autism gets easier as they move from the initial diagnosis to the subsequent barrage of treatments and therapies… then, and only then, can one come to terms with one’s “new normal,” one’s new identity.  John Fuller said it so well in his article God in Autism (The Washington Post ‘Guest Voices’ April 15, 2012):

“I used to have the 'daddy thing' down pretty well. My wife and I had five children, and they were all excelling. We were, in many ways, a 'model' family. Things changed a few years ago when we adopted an infant from Russia... As he approached the age of two, we could tell something serious was going on. Zane had no verbal abilities. He avoided eye contact with others. There were frequent, uncommonly intense temper tantrums… Zane routinely banged his head on objects... We were referred to a child neurologist… who said… ‘Zane is definitely on the autism disorder spectrum (ASD).’ ‘Shell-shocked’ describes those first couple of months ... After several months of serious research we finally found some starting points that helped Zane … The help came at a price… It meant learning to live without much privacy. Our home became staging grounds for a team of therapists who worked with Zane … After one therapist left, another arrived and took her place. 

Through the early years we had on-going occasions to re-learn our parenting, and to let go of ‘normal’ expectations for our son.

Our family’s subsequent journey through the world of special needs has made our lives messier and, in many ways, more difficult – but God has used these experiences to teach us firsthand lessons about love, commitment and compassion.”(see full article in my earlier re-post on this blog)

He articulates SO clearly what it’s like to have to make that shift from one identity to another…. We found ourselves in a similar spot just a year ago. April 2011 rolled around and we made a huge shift as a family: we decided to be as open and honest as possible with everyone about our little man’s diagnosis and let the chips fall where they may. I would say that’s when we found out who our “true friends” really were. Several relationships and friendships were severed as a result. Our identities were slowly being forced to change.

Yet to our surprise, once we made this shift we were embraced by a whole new community: the autism community! This was a community where NO ONE judged our parenting based on our son’s behavior. This was a group where, more often than not, we’d hear, “Yeah, I know what you mean!” instead of, “Oh… well, have you tried reading to him to see if he’ll start to speak?,” or, “Have you tried ignoring him?,” or, “Maybe you should just lock him up in the bathroom,” “Have you tried a punching bag?” and “Well! Now we all know who runs the show at YOUR house!” {and, yes, these are ALL things that people-- friends and family-- actually said to us}

The culmination of our shift was going to the walk for Autism Speaks. Seeing ALL of those people going through the same experience was dauntingly refreshing. WE WERE NOT ALONE!!! Driving around on World Autism Awareness day we felt a part of a much bigger thing: the autism community.  It all became crystal clear to me earlier this school year when it was called to  my attention that I was too vocal about my son’s disability at my place of work. In that instant I not only felt misunderstood, but I felt offended. Upon a second conversation things were clarified: this is who I am, this is who my family is, the autism community is our identity! Being asked not to identify myself as such would be the same as asking me not to speak of the fact that I am a Latina.

Yet autism does not define our family. I am still who I am and my husband is still who he is. I try, as often as I can, to see my little man as just a four year old boy. Hyper, curious, weird and did I say hyper? Eustacia says she kept her identity by going to weekly therapy (alone) and by taking vocal/singing lessons which kept her in her own world, even if just for a short time each week. After being diagnosed with high blood pressure and being at the max for medication for my migraine and other issues, I decided it was time to remember who I was. Yes, I am a mom, but I’m still ME. I am still my husband’s wife. I am still my sisters’ sister and my mother’s daughter. I HAVE to take the time to keep one foot in that world, lest I get lost in the world of autism. It’s who we are, but it can not DEFINE who we are. My little man is just a great kid who loves to be active, loves the water, loves airplanes and trains and loves to be loved. I am still the woman who loves to be pampered by getting facials and massages and I just love to ride my bike! My husband is still the highly intellectual music/movie/technology buff, tequila aficionado and friend who enjoys a good meal, good conversation and good drinks with an equally intellectual friend. Keeping one's identity while also navigating the autism journey is a careful balancing act that is not easy but certainly worth the effort!

John Fuller goes on to say: 
“I’ll admit that while it is with some reluctance that I’ve embraced our status as a special needs family, God has used our precious boy in many profound ways. The lessons have been difficult, but the rewards have been far greater… As parents we’ve had to let go of plans and expectations. It’s through this process that Zane has taught me to let go of my selfishness. I’ve released most hobbies and outside pursuits as my wife and I have spent most of our time and energy to date helping our son just get to and through the second grade… All of us – including those with special needs, the elderly, the orphan, the preborn – have inherent worth because we are uniquely created by God for a purpose.”

And what does the Bible say about this topic of identity???...... Well, in Genesis the Bible tells us that we are created in His image (Gen. 1:27). Like our biological parents passed on their genetic make up onto us, the Lord Himself passed on His attributes to mankind when He first created us in the Garden of Eden. However, as born-again believers, we have CHOSEN our identity by believing in Christ. We have chosen to believe in Him and, therefore, be a part of His kingdom because He chose us first (John 4:19). THIS should be our foremost identity: children of God.

I hope these words will be a blessing to your life!

Who or what marks YOUR identity?

Blessings!

DC

Music:

Israel Houghton: I Know Who I Am

In Spanish: Danilo Montero- Yo Se Quien Soy Yo

What I Learned from Eustacia Cutler

I wanted to pick up where we left off in regards to the conference I attended where Mrs. Eustacia Cutler, mother of Dr. Temple Grandin, lectured to a group of parents, individuals with ASD and professionals. Like I mentioned in my previous post about Eustacia, the entire group sat in absolute silence clinging to every one of her words. She had given us handouts (typed with a typewriter, so cute!) but I chose to listen and take in everything she was saying. I also took notes of those things which she said that touched my heart or that I felt were specific words of wisdom. I wanted to share my notes with you (I will use the word "autism" to refer to all autism spectrum disorders. Asterisks mark the statements by Mrs. Cutler that I found most touching.):

The concept of "identity":

- "We are social creatures, dependent on each other for our identity" (direct quote)

-** Identity is a fragile core of our being. It is born of  moments when we feel most "ourselves." We acquire its structure in increments, gradually becoming visible to the world. (paraphrased)

- Autism is a family disorder; it changes the entire family identity

-** "When a baby retreats into the world of autism, not one, but two identities are affected. A baby needs a mother to know she's a baby, but a mother needs a baby to know she's a mother." (direct quote)

-** "The sensory scrambling facing the (autistic) child is reinforced by the emotional scrambling facing her parents. When the usual (social-emotional) responses can't grow, consciously and unconsciously, a whole family is changed." (from A Thorn in My Pocket, p. 167)

- Nurture is a two way street, and is therefore affected by autism when the child can not give back

Mrs. Cutler's advice to parents:
-**As parents and caregivers, we must focus on fulfillment and happiness, and not a cure

-** Tears suffocate thoughts

-** Only listen to those who you feel are worthy of listening to

-** "Tantrums are hard to handle, and fecal smears are smelly, but exclusion breaks the heart" (from A Thorn in My Pocket, p. 38)

- When you feel at the end of your rope and like you won't make it through as a parent (paraphrase), "Tie a knot and hang on. It won't be easy, but you'll get there" (direct quote)

- There are no answers, only choices. Choices change. You can only grow by making a choice and making a change. Change can be threatening, but going back to the same path creates neurological synapses and they become behavioral patterns... and THAT is NOT good choice. (paraphrased)

- Men tend to take autism harder than women, as it directly attacks their "sense of honor." It takes away not just any child but HIS child and it cannot be "fixed." (paraphrased) "Odd that autism is primarily a male disorder" (direct quote)

- "The child with autism has to think hard all the time. He has to work out each (social) exchange consciously, often at the same time that there's another coming at him--and another, and another... No wonder he gets exhausted; no wonder he has tantrums; no wonder he's rigid." (direct quote)

For professionals:
- Our/Your professional skills can make a parent feel hopelessly inadequate (paraphrased)

- Parents of autistic children are best served when the professionals act as "coaches" to teach them how to work with their child, therefore giving them the necessary tools to use every day (paraphrased)

All of this information comes from Eustacia Cutler's Lecture at the Boston Autism & Asperger's Syndrome Conference presented by Future Horizons, Inc. (http://fhautism.com/) on March 16, 2012 in Danvers, MA. I take NO credit for any of this information... I am merely sharing with you what Mrs. Cutler shared with us based on her experiences raising Temple. Some of these are paraphrased, based on how quickly I was able to write what she was saying. Some are direct quotes. I hope they will be a blessing to you and will help guide you in your journey on the autism puzzle. Enjoy and feel free to pass this on, I just ask (beg) that you give Mrs. Cutler the credit for any/all of the following information. 

To learn more about Eustacia Cutler's story, please read her book A Thorn in My Pocket and/or read her article "WHO IS YOUR CHILD AND WHO ARE YOU?: Coming to Terms with Autism" in the 'Perspectives' section of Autism Advocate (Second Edition, Autism Society of America, 2009).

Soon I will be sharing with you my own thoughts on identity as a parent of a child with special needs and as a Christian...

Blessings to you!

DC

Amazing Article by John Fuller from Focus on the Family

This article touched my heart in ways I haven't been touched in a long time. Perhaps it's because I have been listening to the Focus on the Family radio broadcast for so long, yet the folks that I heard on there seemed a world away. I am so used to hearing this wonderful man's voice in regards to issues that affect families today but I NEVER imagined we would share ASD in common with one another. Once again, I had that surreal feeling I get when parts of my world/life are brought together by autism. God does NOTHING by coincidence or by accident... So little has been done for families of children/individuals with autism in the world of the Christian media. I hope to get in touch with brother Fuller in the next few months. My initial contacts via the Focus on the Family website really didn't get me very far, but I did find out about his blog and his Facebook page. I will keep you guys informed!

Why am I so excited about this??? Because I want to share my blog with him. I want for John Fuller, his wife and family to know that they are not alone. I want them to join our community of believers with loved ones touched by autism spectrum disorders. Here is the article below.
Blessings!
DC
P.S. I have two of my own posts about identity and Eustacia Cutler to share with you guys soon... but this couldn't wait:
From The Washington Post:

Posted at 08:06 PM ET, 04/15/2012
Finding God in autism

By John Fuller

I used to have the “daddy thing” down pretty well. My wife and I had five children, and they were all excelling. We were, in many ways, a “model” family.

Things changed a few years ago when we adopted an infant from Russia. Our family’s subsequent journey through the world of special needs has made our lives messier and, in many ways, more difficult – but God has used these experiences to teach us firsthand lessons about love, commitment and compassion.

Our son Zane was a weak, but seemingly normal, 9-month-old boy when we welcomed him into our home. While we were told to expect serious emotional issues like Reactive Detachment Disorder, nothing prepared us for what soon emerged.

As he approached the age of two, we could tell something serious was going on. Zane had no verbal abilities. He avoided eye contact with others. There were frequent, uncommonly intense temper tantrums during which he would writhe on the floor uttering loud cries. Zane routinely banged his head on objects: the wall, the metal bed post, or even the floor.

We were referred to a child neurologist who, after 30 minutes of observation and a review of an assessment tool, said matter-of-factly, “Zane is definitely on the autism disorder spectrum (ASD).”

“Shell-shocked” describes those first couple of months after that conversation.

My wife and I emerged from that shock determined to address the autism, to “fix” it – but despite the fact I work for a family-help organization and have met many countless “experts” through my job, we didn’t know where to start. There were no support groups. What we found instead were many conflicting anecdotes about specialized diets, chelation treatments, and mostly unproven approaches to treating autism.

After several months of serious research, we finally found some starting points that helped Zane learn to reduce the potential for self-injury and to increase the likelihood of being able to interact with others in everyday situations.

The help came at a price, however: an intensive schedule of therapists coming into our home to work with Zane for 30 or more hours each week. It meant learning to live without much privacy. Our home became staging grounds for a team of behavioral therapists who worked with Zane for an hour or more per visit. After one therapist left, another arrived and took her place.

Through the early years we had on-going occasions to re-learn our parenting, and to let go of “normal” expectations for our son. Despite the therapies, the tantrums continued. He was inconsolable in those episodes, as he shouted, screamed, flailed his arms and bit us on the arms.

Perhaps one of the most painful experiences occurred when Zane was five. I found myself unsuccessfully trying to explain to an angry father at the playground why my son had verbally threatened his precious 2 year-old daughter. The man’s judgment and scorn for my apparently poor parenting cut to my heart.

I’ll admit that while it is with some reluctance that I’ve embraced our status as a special needs family, God has used our precious boy in many profound ways. The lessons have been difficult, but the rewards have been far greater.

Our family has come to see and practice what sacrificial love means. We’ve pulled together as a family, working hard to accommodate Zane’s autism and give him the help he has needed. Our five other children have helped with meals and cleaning. The older kids drive their Zane to appointments with occupational, speech, and physical therapists. Seeing our children rally around their brother has meant the world to my wife and me.

As parents we’ve had to let go of plans and expectations. It’s through this process that Zane has taught me to let go of my selfishness. I’ve released most hobbies and outside pursuits as my wife and I have spent most of our time and energy to date helping our son just get to and through the second grade.

Our marriage has weathered the storms of caring for an autistic child despite the majority marriages of special needs parents ending in divorce. I can only attribute this to the strength, peace and comfort God has given us throughout our journey. God has also placed us in the middle of a circle of family and friends who pray for us and help us. The result has been my wife and I have emerged closer as a result of pulling together in the same direction – nothing short of a miracle.

Through our experiences of raising a boy with autism I’ve found myself with a more tender heart toward the disabled. When encountering a special needs family, my heart goes out to the child and the parents with a renewed sense of the calling and the challenges being faced, and a determination to personally affirm the value and dignity of that unique person.

That’s the bottom line, after all. All of us – including those with special needs, the elderly, the orphan, the preborn – have inherent worth because we are uniquely created by God for a purpose. Once we recognize this simple truth, we are inspired to offer a kind word and an understanding heart to those society considers outcasts. Once we see the dignity in each and every individual, we become willing to disrupt our “model” lives and embrace the beautiful mess of investing in others.

John Fuller is vice president of Focus on the Family’s Audio and New Media division.

By John Fuller  |  08:06 PM ET, 04/15/2012 

http://www.washingtonpost.com/blogs/guest-voices/post/finding-god-in-autism/2012/04/15/gIQAFIP8JT_blog.html

From the Center for Disease Control (CDC)

Why Are Autism Spectrum Disorders Increasing?

CDC estimates 1 in 88 children has been identified with an autism spectrum disorder (ASD). Why is the number of children with ASDs on the rise? Find out what CDC has learned.

The Centers for Disease Control and Prevention (CDC) estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD). This data comes from the Autism and Developmental Disabilities Monitoring (ADDM) Network, which estimated the number of 8-year-old children with ASDs living in 14 communities throughout the United States in 2008. This new estimate marks a 23% increase since our last report in 2009, and a 78% increase since our first report in 2007. Read the latest prevalence report.

Why Are ASDs Increasing?

At CDC, we know that people want answers to what is causing this increase, and so do we. The reasons for the increase in the identified prevalence of ASDs are not understood completely. Some of the increase is due to the way children are identified, diagnosed, and served in their local communities, although exactly how much is due to these factors is unknown. Also, it is likely that reported increases are explained partly by greater awareness by doctors, teachers, and parents. To understand more, CDC will keep guiding and conducting research into what is putting our children at risk.

However, the data tell us one thing with certainty—more children are being identified as having ASDs than ever before and these children and their families need help.

Recent Findings

Pregnancy and Birth Factors

CDC researchers developed a model to estimate how changes in six pregnancy and birth factors might have contributed to the increase in ASD prevalence:

• Preterm and very preterm delivery
• Low and very low birthweight
• Multiple birth
• Cesarean delivery
• Breech presentation
• In vitro fertilization or other assisted reproductive technologies (ARTs)

The study found that it is very unlikely that any of the pregnancy and birth factors included in the study could have been responsible for such a large increase in ASDs from 2002 through 2006.

However, the model developed for this study will be useful for future research and can be used to assess other risk factor scenarios.

• View the summary of article finding
• View the article abstract

Evaluation Workshop

To provide a forum for sharing the latest information on ASD prevalence changes, CDC and Autism Speaks co-hosted the "Workshop on U.S. Data to Evaluate Changes in the Prevalence of Autism Spectrum Disorders." The workshop brought together scientists and stakeholders from the autism community to increase knowledge about ASD prevalence, to learn from other conditions, and to share ideas on how to move forward to better understand ASD trends.

• View the executive summary  [PDF - 372KB]
• View the complete report  [PDF - 1.13MB]