Making Sense of Autism: Myths and Truths for the Church

April is National Autism Awareness Month. According to the latest findings of the Centers for Disease Control, one in every 91 children in the U.S. will have some form of autism. Maybe you know of families affected by autism, whose lives are completely overwhelmed by the challenges. If they turned to your church, would they find help and support? Or, would they be met with the typical false assumptions and myths that can accompany a diagnosis of autism? Myths such as “all children with autism have mental retardation and behave the same,” or autism “is actually caused by poor parenting.” Nothing could be further from the truth.

The truth is we don’t yet know the cause or cure for autism, but we know that autism separates families from the church. Autism creates fears that the church can ease. Parents feel isolated because their families can’t always do things together like other families. These parents walk through our church doors every week assuming that we don’t understand their needs . . . and most of the time, they’re right! I have seen how our ignorance hurts families emotionally and spiritually. However, I’ve also seen that when we act with the mind of Christ, Christians have a tremendous opportunity to grow alongside these families. At whatever age their child is diagnosed with autism, the church’s response should be: “We don’t care what your child’s disability is; there’s a place for you here.” This goes beyond just providing childcare during worship, to facilitating full-participation for all families.

If your church doesn’t have a special needs ministry, Joni and Friends has a wonderful resource filled with advice, answers and articles – Special Needs Smart Pages. (www.joniandfriends.org)

A special needs ministry can touch the whole congregation. Thanks to the special needs ministry at his church, Dr. Scott Daniels understands the isolation and stress autism puts on marriages. “As our church truly becomes a genuine community, we’re capable of bringing encouragement and healing. But I wonder what the prospects are for couples who don’t have that unique community,” says Dr. Daniels. “As we see God’s well-intentioned plans for these children, it is transformational to us. We have become a better people because we have this kind of ministry—living, laughing, and struggling together to become the Body of Christ.”

National Autism Awareness Month in April is a great time to educate your church about autism. Joni and Friends has created an excellent new resource that can help. Making Sense of Autism is a two-part TV episode by Joni and Friends that takes you into the lives of families affected by autism to witness their joy and frustrations. It includes videos and study guides that can be taught as a half-day seminar or a four-week series. Hosted by Joni Eareckson Tada, it features advice from parents, pastors, experts and teachers who are addressing the issues of autism as Christ’s followers. To learn more visit www.joniandfriendstv.org.
 
You may be surprised to discover that families affected by autism can actually strengthen your faith community in ways you never anticipated. This is one of the mysteries of faith, that God uses those we perceive as weak and less wise to stretch us, mature us and teach us His ways.

- Written By Pat Verbal
Pat Verbal is the Manager of Curriculum Development at the Joni and Friends Christian Institute on Disability. Her email address is pverbal@joniandfriends.org.

Diagnosed With Asperger's Syndrome

April is Autism Awareness Month and the value of awareness can’t be stated enough. My name is Aaron Likens and last year I have had a strange journey to discover that my passion in life is to raise awareness.

Raising awareness wasn’t always a priority. In fact, before I was diagnosed with Asperger’s Syndrome in 2003 at the age of 20, I had not even really thought of the autism spectrum as anything worth thinking about. Of course all that changed once I was diagnosed.

After the diagnosis I went into a deep depression. My life, as I knew it, seemed to cease. I lost the girlfriend I had at the time and my first passion and dream, driving race cars, was becoming harder to achieve.

A year after I was diagnosed a funny thing happened. It was late at night, and my depression was at its deepest point, when I sat down and started to write. I wrote about the relationship I lost and broke it down into why my behaviors were the way they were. The next night I wrote on a different relationship that had fallen apart in spectacular fashion.

Night after night I wrote a chapter on different aspects of my life. I had no intention of writing a book, but after about 3 months of writing I started to ponder if it was good enough. My dad had been sending my materials to a lady at Autism Speaks who was reading as I was going along and she had told my dad that my writings were some of the most important, eye opening first-hand accounts of Asperger’s.

I started writing my first book in 2005 and in November of 2008 my book, “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome” was released. I must admit that when it was released I was only anxious on what the sales meant for me. Just as my life changed when I was diagnosed, my life would take a turn in 2009.

I had my first book signing at a Barnes & Noble here in my hometown of Saint Louis. During the signing there were 2 sets of parents that came up, in tears, saying that their school district and doctor don’t understand. This may sound cold, but at the time I was simply thinking that these parents were at least one book sale. A classic case of lack of empathy, I know.

In the next 3 months I had 5 more signings and at each one the story that was told to me at the first signing was repeated. One parent was told, “Don’t worry about autism. He’ll grow out of it by the age of 16. They all do.” Still I was unmoved.

My dad had kept the lines of communication open with Autism Speaks and they sent me 2 tickets to the NASCAR Autism Speaks 400 held in Dover, Delaware. After the race I was going to drive up to meet the lady who first said my writings had merit.

During the race I began to truly think about what all parents had said to me at my signings. Above the roar of 43 engines I begun to understand just how wrong, and almost criminal, it is for parents’ fears to be cast aside. The quote from that one doctor roared around in my head faster and louder than any of the cars that day.

The following day I drove to New York City to meet with the lady. We talked for a long while and she asked me if I was still passionate about auto racing. I gave a reply that was more important than hearing that I was on the autism spectrum, “Yes, I still would like to race, but it no longer is the priority. Yesterday, Jimmie Johnson won the NASCAR race, but how many lives did he change? How many families’ lives were improved because of his victory? I had the talent to win, but life has a funny way of working out. I’m in a new race now, a race to raise awareness.”

Since that day in New York I have given radio interviews and have been more vocal on raising awareness. In March I started a full time job with Touch Point Autism Services as their Community Education Specialist to raise awareness and to promote early diagnosis and early intervention.

With this month as Autism Awareness Month there is no better time to spread the word. No parent should ever be told that autism will simply “go away”. Whereas before my life was about me, whether it was trying to race or trying to sell one book, now it is to try and educate anyone and everyone on what life is like on the spectrum and that there are therapies and interventions that work wonders.

So this April is my first Autism Awareness Month that I know what my passion is. I guess you could say that, for me, the race is on.

-written by Aaron Likens
About the author: Aaron Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome” and serves as Community Education Specialist for Touch Point Autism Services. His website is www.findingkansas.com and his blog can be found at http://lifeontheothersideofthewall.blogspot.com
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Autism Mom Shares Her Knowledge and Experience

April is Autism Awareness Month. In honor of that, I am starting a special Autism Only Articles on my blog for the month of April. I am beginning it now, in order to get the word out. Today, I would like to share my interview with Chantal Sicile-Kira, mother of an autistic son, author and speaker. Thank you, Chantal, for doing this interview with me.



1. Can you share with my readers who you are and a little bit about your son?

I am an advocate, award-winning author and speaker known for providing practical tips, hope and inspiration to parents and educators in the autism community.More importantly, I am the mother of Rebecca (17), and Jeremy(21) who is severely impacted by autism.
My first experience with autism was working at a state hospital in California, teaching young adults self-help and community living skills in preparation for de-institutionalization many years ago. Little did I know that years later, I would be using the same teaching skills with my son!

When my son was diagnosed with autism, I was told to find a good institution for him and to place him there. I have – it’s called school! Jeremy, who communicates mostly by pointing to a letterboard or litewriter (as seen on MTV’s True Life “I Have Autism”), passed the California High School Exit Exam on his first attempt and will be graduating in June with a full academic diploma. He writes a column for his school newspaper, and is writing a book about his life with autism. He plans on attending community college. His career goal is to raise awareness about autism by providing presentations and training to school staff and students on autism and inclusion.
 
2. What have been some of the hardest things to deal with in raising your son?

It was hard as a new parent, to go to the local playground and see how the ‘normal’ children were developing. My son was not playing, not reaching out towards, others, not talking. To top it off, the medical professionals I consulted kept telling me there was nothing wrong with him. Once they acknowledged there was a problem, they could offer me no solutions.

One of the hardest things when Jeremy was young was convincing some of the educators and other professionals that he was able to learn; to make them question their methods rather than his ability. I had to file due process against school districts twice in order to get a fair and appropriate education for him. However, once I found a method that worked for Jeremy in order to teach him academics and to give him a way to communicate, he was able to show his educators his capacity to learn, and the barriers fell away.

When he was little, it was very hard figuring out how to reach him, how to teach him basic skills. Nothing seemed to work for Jeremy as it did for other children with autism.
I had to quit my work (in TV and film production) in order to teach him and to do physical therapy exercises with him every day.

To this day, although he has proven how smart he is, his motor skills and sensory processing challenges are such that he requires supports for many aspects of every day life. We are working on helping him become as independent as possible, by trying different therapies to work on motor skills and sensory processing.

It is hard now as a parent, having an adult child who would like to have friends and girlfriends - like any other young man – and trying to figure out how to help him progress in this important area of his life.

We are forever grateful to the educators, professionals, instructional aides, and support staff who have believed in Jeremy over the years and worked so hard in helping him to learn. They have made all the difference in our lives.
 
3. What have been some of your greatest joys in raising your son?

The greatest joys include those moments when we knew he was understanding what was going on around him – the first times he said a word – “key” when looking at a key; the first time he spelled out to communicate; when he took his first multiple-choice test (it was in History, I think) and passed; when he started wiring his book and explaining what his behaviors meant when he was little and what he was thinking, as well as what methods I was using helped him and why.

Anytime he learned something new, that his ability to use his motor skills improved – all these seemingly little steps represented so much work on his part to get his body and mind working together- has given me much joy and hope.

Another joy is all the wonderful people over the years who ‘got’ my son, who taught him, who offered him opportunities to learn, to make connections with others and become a better person. These people will never be forgotten.
 
4. Can you tell my readers about the book you have written "41 Things to Know About Autism."

Outside of the autism community, people don’t have access to information about autism other than what they hear in the media. Wherever I go and people find out that I am an expert on autism, they start peppering me with questions that they want answers to: “Does vaccines cause autism?” “Is there really more autism now?” “I think my child has autism, what do I do?” “Why does that kid act the way he does?” “My friend/daughter/son has a child with autism – what can I do to help?”

This book answers all those questions and more in a clear understandable way. Parents of newly diagnosed children will find this a good first book to read; more experienced parents will want to give this to their friends, relatives, neighbors to read so they can understand about what is going on in their lives, how autism has impacted their family. I wish I’d had a book like this when my son was younger- I would have given it away to all the important people in my life so they would understand Jeremy more. I hope it provides better understanding in the general population about people on the spectrum and their families.

For more information on Chantal Sicile-Kira, visit www.chantalsicile-kira.com