Autism Awareness

Did you know that only 5% of children with autism in the U.S. participate in clinical research studies each year, while nearly 90% of children with cancer are enrolled in research studies? This contribution has led to many new discoveries and positive outcomes for children with cancer. An increase in research participation by those in the autism community could yield similar gains.

Discoveries that advance our understanding of Autism Spectrum Disorder come from research studies specifically designed for those on the spectrum, as well as studies designed for observation of volunteers of all ages who are not on the spectrum. Research studies that may provide answers can be stalled or prematurely closed if they are unable to enroll enough study participants.

ResearchMatch can help.

ResearchMatch.org is a free, secure, and easy to use volunteer registry sponsored by the National Institutes of Health (NIH) that easily connects potential research volunteers with researchers seeking participants. Anyone can join. All volunteers have to do is create a profile and wait for researchers to contact them via email. Volunteers can rest assured that all their identifying information is protected, and is only released if they indicate an interest in participating in a study.

Here is the story of one family’s experience with participating in Autism research.

“My son was diagnosed with an Autism Spectrum Disorder when he was 7 years old. This wasn’t exactly a shock. We had known that there was something unique about his behavior and abilities since he was an infant and he had been receiving intervention services for language, and behavioral and occupational therapy since he was 15 months old. He is “high functioning” in many ways, so we were hesitant to have him stuck with a label for life without giving him a chance to “grow” out of it.

Medicating our son wasn’t something we jumped into quickly, but he simply couldn’t function at home or at school. It was affecting his self-esteem and the other members in the family. After a 45 minute rage tantrum at home one day, he was crying, lying with his head in my lap for comfort, and sobbed “I’m a monster, what is wrong with me?” That was it – the defining moment. I assured him that he was not a monster and we were going to find something that would help him.

We finally found a medication that provided some relief for him. It didn’t alleviate all the problems, but did increase his ability to function. He finally felt like he had some self-control instead of a hair-trigger reaction to things. Sadly, there were some ugly side effects. The worst was weight gain. He had been a very slim child but kept gaining weight at a steady pace no matter what we did to try to slow it down. But, the benefits the medication provided were more than just benefits to him. They were the difference between somewhat impaired functioning and not functioning at all.
When my son was 12, I received an email that described a research study for autism and immediately called the study coordinator. The medication was showing very promising results in early trials, without some of the side effects of his current medication. At this point, the weight gain was beginning to affect his self-esteem and we were becoming concerned that it would affect his health. We have a high incidence of diabetes in our family, so we had to give this a try.

Participating in the study was not easy. We had to remove all medication from his system and he had to remain medication free for a period of time before starting the study drug. The one good thing about this time is that we received confirmation that he definitely needed medication to function. Finally the day arrived when we received the study drug. Initially, the result was very anticlimactic – there was no perceived benefit at the lowest levels of dosage. Gradually, the dose was increased over the next few weeks. With each increase, there was great expectation that this would be the magic dose, but he still wasn’t responsive to the increased levels. We came to the last increase allowable for the trial and had all but given up, but had come this far and wanted to finish the trial to give the researchers the information that they needed. But this was the magic level!!! He felt better. To fully complete the study, he would have had to come completely off the medication again, but the researchers knew that this wouldn’t be best for him and would further delay his participation in school, so they removed him from the study while allowing him to stay on the medication.

His participation had been helpful to the researchers, but it was life-changing for our family. It’s been about 3 years now and my son has lost 20 pounds and gained a few inches in height. We are no longer worried about him developing diabetes. His functioning is better on the study medication than it was on the only other medication we had found that would work for him before the trial. I am so thankful. My son has received a benefit, which sadly, many will not receive until the medication has been fully approved.

Life still has its challenges. Anyone who has experienced raising a child with the comorbid conditions of an ASD and Adolescence will understand this; but I feel that this medication has given him the absolute best opportunity to function that is currently available. Had it not worked, it would have been devastating, but it would have assured us that medication was still needed for him to function and we would have known that we had done all that we could do for him – and that is all any parent can hope to do.”

How can every member in your family contribute to the understanding of autism?

• Consider joining ResearchMatch.org. If you have an email address you can enroll today!
• Ask your physicians if they are aware of any studies in your area.
• Watch this video: Participating in Research:

National Autism Resources is proud to announce our autism affiliate marketing program. By referring your friends and family to shop at National Autism Resources, you can earn 8% of the total sale (minus tax and shipping) as our way of saying thank you. Also, if a person you refer makes any purchase within a 90 day period, you will get credit for all of those sales as well. Its never been easier to earn money while also helping people find great resources to support kids, teens and adults with autism.

This program is free to join. Once you meet the minimum requirements for being paid ($50), you will get a check in the mail from our trusted third party tracking system Share a Sale . This program is our way of saying thank you to all of our loyal customers and to help spread the word to those who need anything from teaching aids, to calming toys, or any of our proven autism products.

All you need to do to sign up is click here and begin filling out the information. Once you are approved into Share a Sale , just press the find merchants button, then type NationalAutismResources.com into the search box. Next, apply to our program and we’ll approve you ASAP.

If you have any questions, you can always contact our affiliate management company by skyping Adam at adam-riemer, emailing affiliates (at) nationalautismresources (dot) com or by leaving a comment on Adam’s blog. Adam is here to help with anything that you need as well as explain how to sign up and get started.

Our program will help you create links to any product on our site, provides a ton of great looking banners, links for emails to friends and family as well as videos about the products. If you think of something that we don’t currently have, please let us know and we will work on creating it for you.

Thank you again for being one of our loyal customers. We are looking forward to having you as a partner of National Autism Resources.

By: JD Kraus

1. Be Yourself.
As hokey as this sounds it’s the truth. There is no point in pretending to be someone that you are not. As a teen, I tried to make friends by acting that I liked sports (since so many kids at my school were sports buffs), but I never really cared for them. It not only made me feel bad, but it got me nowhere in developing friendships. Being yourself is being true to your own identity.

2. Be open and willing to talk to others.
In the real world, you cannot be a clam. If you have a question in a class, raise your hand and ask the teacher. If you want friends, you’ll have to go out of comfort zone and talk to people. The best way to befriend someone is by asking them a question, like “What’s your favorite movie?” A little inquiry like this can start a conversation, and a conversation can lead into a friendship. This is especially important if something or someone is bothering you. It is

3. Reward/set time aside for yourself.
I know days of school and work can be tough. To help get through the day, set some personal time aside for yourself each day. This can be playing a favorite video game, watching a TV show, etc. Squeeze at least an hour a day of this personal time. The purpose of this is to give you a chance to relax and “recharge your batteries.”

4. Do something you enjoy in school.
I know this sounds hard, but it made the difference for me. When I attended the vocational school in my junior year of high school, it had a positive impact on me, for I was in a digital design program—something I enjoyed learning. Look for courses that pique your interest.

5. Have fun.
This really relates to all of the topics I have mentioned above. As absurd as it sounds, having fun in life (both at school and at home) makes the difference in developing an easygoing, worldly experience. How you go about doing this is entirely up to you. For me, it is spending time with my family, playing a favorite video game, and working in small groups for school related projects. I guarantee that once you find something that you relish, it will make many of your problems go away.

J. D. Kraus is the author of The Aspie Teen’s Survival Guide and was diagnosed with Asperger’s Syndrome in the fourth grade. He is currently finishing his degree at the University of Cincinnati, and continues to overcome challenges while embracing his differences.

By: Mike Tumlin
Twelve years ago if anyone would have told me all the things I’m doing today, frankly I would’ve told them that they were crazy. I was at the end of my rope. My children had been displaying many undesirable and socially unacceptable behaviors and I was completely ignorant about autism. I was in complete denial and being raised on the end of a hickory stick I thought that what my kids needed was discipline.

About this time I left the construction industry and was hired by Norfolk Southern Railroad as a conductor. At the time I thought this was the best job a blue collar, uneducated person like myself could get. The problem was that when you work on the railroad as a conductor you work the “Extra Board”. This meant I had random shifts, worked 70 to 80 hours a week and was guaranteed only 8 hours of rest after each twelve hour or less shift.

During this time I blamed the behavior of my children on my poor wife! I thought she was not disciplining the kids enough. Meanwhile most of the time I was only home for 8 hours and then off to Atlanta for three days at a time. I know now had I stayed at the Railroad I would have surely lost my wife and my children.

With things so far out of control in my life, I turned to God and started to follow the teaching of the Lord Jesus Christ. I began to pray and God began to answer my prayers and I came out of denial. I began scanning the internet reading and desperately searching for what was wrong with my children. Christ led me to an article about Einstein that mentioned that he may have had Asperger’s. I then did a search and found a rating scale and it was like it was describing my son to a tee.

When we finally got the diagnosis I felt that things would finally get better and I would be able to turn the diagnosis over to the school and all would be well. Well it didn’t quite work out like that. The teachers and the school here in Alabama didn’t know anymore about autism than I did.

Since I was a new employee at the Railroad and destined to be on the Extra Board for a minimum of 15 more years my wife and I quickly realized that one of us would have to come home and quit letting the day care raise our children. Her job was better for our family so I quit. This cut our income in half and was a big blow to me being a male but it was the best decision for our family.

Though we may not have a lot of money we feel very blessed by God’s goodness. The cars that were new when our kids were first diagnosed are still on the road, both with over 300,000 miles each. This may not sound like a blessing to many but this has been a blessing to us. With each breakdown and repair Christ has guided my hands as I make each repair and our cars are still moving.

During this time I felt that God wanted me to start a support group. To be perfectly honest I fought this notion and asked God to give this job to someone else. Maybe someone with only one child with autism. But God’s answer kept coming back the same, “I’m going to take care of your children and you are going to help me take care of many more.”

In my dreams I would always see a sign with red letters and a T on top of it. This just didn’t make sense to me as I live in the sticks and we didn’t have so much as a red light much less a flashing sign. Around this time I was taking my kids to school each day and watching as they built a new church on the way. Then one day I saw it! It was never a “T” that God was showing me in my dream but instead it was a big red cross right on top of the new sign they were building in front of the church.

I went home and asked God to guide me to whatever he wanted me to do. I never built a website but with God’s help I built what eventually became the Alabama Autism Support Network. Next, I began working on a way to find people to join what I thought was going to be a small support group at the new church. I went in and talked to the pastor and to my surprise he was completely supportive of my idea. By this time it had been four years since my children’s diagnosis and we had never met another parent with a child on the spectrum, the website was our only way to connect with others.

Well it turns out that this was just the beginning of what God had in store for me. I developed an “OCD” if you will of learning about autism and sharing that knowledge with others. I began sharing what I learned on the Alabama Autism Network and folks from all parts of the state began to find us. Just like autism does not know county lines I could not turn folks away saying that this was just my school, or county, or state so now our network is open to the world. It turns out that there are so many folks like my wife and I that want to talk with other parents and learn about autism. We are now the largest support network in the Southeast growing at about two people a day. I thank God for the network because he knew we all needed it. I now also travel across Alabama to help get more face to face support groups started in our state.

My Lord Jesus Christ continues to meet all of my family’s needs. Many times at the last minute the phone will ring and the solution to whatever the problem may be is given, whether it be financial, words to say, or how to raise my children. I stand on God’s promise to us all that he will never put more on us than we can take. I have faith that he will continue to take care of my family and continue to take care of my children by helping them rehabilitate.

Though many of these victories would seem trivial to many folks they mean the world to my family. So now when I’m asked, and I’m asked often, what has been the best therapy for my children that are doing so well. I immediately without hesitation can say “Jesus Christ”! I pray that if you are reading this that you will give God a chance! It will be the best thing that you have ever done- I promise. For your guarantee that eternity will be so much better than this world please read John 14.

Mike Tumlin is the founder of Alabama Autism & Asperger’s Support and Info Network www.AlabamaAutism.org.

By: Elizabeth Bonker and  Virginia Breen

If I had to identify one crucial skill for any mother trying to find her way through the maze of autism, it is this: learn to understand the difference between a diagnosis and a label.  At each stage of her life, my daughter has defied the labels assigned to her.  Elizabeth has autism and is functionally non-verbal.  Although she was diagnosed as mentally retarded at age two and a half, we knew that was only a label, and an inaccurate one at that.  Her true diagnosis is brilliance and her intelligence has now been tested in the genius range.  But it took us years to prove what we always knew:  she was in there desperately trying to break free from her silent cage.

When Elizabeth was six years old and starting to hit herself in frustration from her inability to speak, we were blessed to find Soma Mukhopadhyay.  Soma taught her own son, Tito, to “write” by pointing out letters arranged alphabetically on a piece of laminated paper using her Rapid Prompting Method (RPM).  We had to give it a try.

On one of our first visits to Austin, Soma asked Elizabeth to write a word that started with A, and to our surprise Elizabeth typed, “Agony.”

Soma asked her if she knew what agony meant, and she replied, “Quite so.”

I was in the room and started to shake.

Soma took a deep breath and asked again what agony meant, and Elizabeth typed, “Pain.”

“What causes you agony?” Soma asked.

Elizabeth gave her a sideways glance, filled with exasperation, and typed, “I can’t talk. I am stressed. I have no way to say that I am greatly bored with my day.”

When Soma tried to commiserate with her by saying she is also often bored, Elizabeth banged her head with her hand and typed, “But you talk.”

Soma has freed more than a thousand adults and children from their silent cages.  If your child is non-verbal, please look into RPM at www.halo-soma.org.

Besides typing out her schoolwork, Elizabeth mostly communicates by writing poetry because she can pack a lot of meaning into few words.  Her poetry tells us about the inner world of autism and shines a light on the world around us.  She wants the world to know that just because she is non-verbal doesn’t mean that she her brain isn’t functioning.

Elizabeth wrote this poem and reflection when she was nine years old after one speech expert suggested that maybe she just didn’t want to talk.

Me
I sometimes fear
That people cannot understand
That I hear.
And I know
That they don’t believe I go
To every extreme
To try to express
My need to talk.
If only they could walk
In my shoes
They would share my news:
I am in here
And trying to speak everyday
In some kind of way.

I wrote “Me” to let people know that even though I don’t speak, I feel and understand the world around me.  I want to be heard and respected.  I want that for everyone, especially for people like me.

Over the past dozen years, we have seen many experts at world-renowned institutions in our quest to help Elizabeth.  All too often the initial visit starts off with a conversation like this:

Doctor:  Tell me about Elizabeth.

Mom:  Elizabeth is fourteen, she has autism and is non-verbal but she is…

Doctor:  OK, so she is low-functioning…

Mom:  If I said she was blind, would you have said she was low-functioning?  I was about to say she is very bright and communicates by typing on an iPad.

Doctor:  Oh, I see.

It is our hope that the doctors learn to see autism with new eyes.  That they don’t jump to label our kids’ complex medical issues as “autism” but treat their brains, guts and immune systems.  That they don’t equate a lack of verbal expression with a lack of language, a lack of interiority and, worst of all, a lack of personhood.  That they assume intelligence.

Elizabeth is full of hope for the future.  Will you join her plan to change the world?

Bright Future
When you see
A tree
Think of me
Growing strong and tall.

When you see
The sun shining brightly
Think of me
Tough and mighty.

When you see
The water on the lake
Think of the future
I plan to make.

Me
Strong
Mighty
Free

Elizabeth Bonker and her mother Virginia Breen just published I Am in Here: The Journey of A Child with Autism Who Cannot Speak but Finds her Voice (Baker Publishing).  For more information and resources to help your child, visit www.IAmInHereBook.com.

Have you ever thought about how you’d like to change a life but didn’t quite know how to do it? Instead of stressing over finding the perfect charity to volunteer for – and don’t get us wrong, it’s wonderful to volunteer – consider doing something a bit more closer to home, like inviting over a friend with Autism or another special need.

Children with autism face so many challenges, among those challenges is the difficulty of making friends and interacting with others. It’s so hard for them to find others they can relate to, in fact many have no friends. By inviting over someone with a disability, you’re giving that special person a chance to actually build meaningful connections and to feel like he or she fits in – two things everyone needs. Not only that, but you’re also allowing for yourself and your family to be educated about the true nature of those who have Autism or other disabilities.

Don’t think that changing a life has to be a grand or public display. You can change a life for the better by simply extending a hand and including a person with a disability in your child’s play time. Remember, this simple gesture could make all the difference, for you, your child, and that special person with different abilities.

By: Marla Roth-Fisch

Do you know a sensory sensitive child who is trying to understand themselves or starting Occupational Therapy?  If so, Sensitive Sam is the book for you!  This helpful book is based on my experience working with my son who has experienced both challenges and successes when it comes to Sensory Processing Disorder (SPD).  Children will enjoy reading about Sam as he engages in several sensory situations at school, home and at the Occupational Therapist’s office.  Children with sensory issues will be able to relate to Sam as he explains from a child’s perspective what it’s like to have SPD.  Professionals and family members can use this resource to start open communication about sensory challenges and ideas for coping.

Best of all, Sensitive Sam also includes a quick reference guide to Sensory Processing Disorder with a glossary of helpful terms and website resources mixed in with its rhythmic and expressive language and bright illustrations.

The book offers a unique conclusion:  using tools to help manage sensory challenges a child can become more comfortable in sensory surroundings, and a child who feels different isn’t necessarily a bad thing.  A great resource for parents and professionals who are looking for a way to comfort and reassure sensory sensitive  children.

A new book has just come out: How to Talk to an Autistic Kid.  Written by Daniel Stefanski, a young man with autism we think this will be a wonderful resource for classmates and neighbors who would like to befriend people with autism.  Recently we were able to ask Daniel a few questions about his book.

Daniel, everyone at National Autism Resources really enjoyed reading How to Talk to an Autistic Kid.  Why did you decide to write it?

I wrote the books so kids and adults can learn more about autism.  So people can understand why autistic kids act the way they do.  So autistic kids can have more friends.

There is lots of good advice in your book.  What’s the most important advice you could give someone if they want to talk to an autistic kid?

Be patient. Understand autistic kids are kids, too—kids who want to play, have fun, and have friends.

Do you have any special talents or interests outside of writing?

I’m a good golfer. I won a gold medal in Special Olympics golf last summer. I like to draw and create things. I want to go to an art or engineering college.

It’s so impressive that you wrote a book at the age of 14!  What are some of your goals for the future?

I want to travel all over the world with my family so I can teach people about autism. I want to play golf at lots of different courses. I want to learn about film production and computer animation so I can make movies and video games for kids with disabilities.

We’re excited to offer How to Talk to an Autistic Kid at our autism store!  Do you have tips to help people talk to autistic kids?  If so please share them on our Facebook page and you could win a signed copy of this book!

On December 18, 2007, the United Nations declared April 2 as World Autism Awareness Day (WAAD).  Autism is now affecting tens of millions of people all across the world. The United Nations created world autism awareness day to encourage early diagnosis and early intervention and to express their deep concern for the high rate of autism in children in all regions of the world.

 Please join us in our effort to inspire compassion and inclusion and hope for those with autism. Start a conversation today with somebody you come into contact with. This can be as simple as saying “happy world autism awareness day” to friends or coworkers that you come into contact with today.