Dr. Gail Saltz discusses how the Autistic Brain is uniquely wired to offer special gifts neurotypicals only wish they possessed. From her book, The Power of Different, a glimpse (medically speaking) into the brain of a person with Autism.

In this clip from the documentary, “Coping to Excelling” a closer look is taken at the choices in education for those on the autism spectrum. While the options are continually expanding, it is discussed among experts that one size does not fit all and as a parent, you might choose a combination of options to suit your child’s needs. Chiming in is: Dr. Temple Grandin, Dr. Tony Attwood, Dr. Chris Plauche Johnson & Billy Edwards w/Behavioral Innovations

Meet Charlie Allen

Charlie Allen

While growing up as the sibling of someone with autism may progress without a hitch, many harbor feelings of loneliness and resentment. As someone who falls somewhere in-between the above examples, I offer you my son, Charlie Allen. Not until the writing of this blog has Charlie, our youngest, granted me my long desire to write about him. He is the sibling, the brother to Samuel Allen that few, outside our family’s personal circle, know much about.

About Charlie

Charlie was born in 1997, the younger brother to our firstborn Sam. We had no knowledge of Sam’s Autism at this time so the years for early development were probably typical. Contrast to Sam’s quiet world, Charlie had a robust laugh and twinkle in his eye that set the stage to delight anyone in his presence.

I would rather be closer to my brother with autism than close to fake friends who isolate because of autism. Early on, I knew that wasn’t kind nor the way I wanted to be.

Charlie Allen

Everything changed when Sam began school.

It took four years to diagnose Sam’s autism. Meanwhile Charlie felt the residuals of the strain our family was going through. The dynamics changed and we, as a family, had a multitude of adjustments to make. Not easy on a child so very young. It was a blessing and relief when my husband and I decided I would leave my career to stay home, and since Sam had already started school, it gave alone time for just me and Charlie. We were given the privilege of time, those years were bonding and now I believe instrumental in Charlie’s foundation….and boy did he need one!

By the time Charlie began Kinder, his brother had already made his mark at the public school system where they would ultimately graduate from. Charlie’s quiet yet humorous nature began to emerge. My parents, both now deceased, were his biggest fans/supporters and gave both our sons their time and support that were monumental to both their development. But the Middle school years and beyond became difficult for Charlie. He had developed his own challenges such as fine and gross motor skills (penmanship, tying shoes) that made sports or P.E. painful. His sensory issues where far greater than that of his brothers. Smells, touch and even sight were greatly affected and had to be diagnosed and adjustments that his peers simply didn’t have to think about. The most challenging for Charlie was peer relations. Charlie had a choice, he could choose to play with the 5 or 6 other children in our neighborhood or his brother. This was forced upon him as the others told him so. Calling his brother “retarded” and refusing to include (actually running from them) Sam in any activity tested Charlie’s resolve early on. Charlie chose Sam. For that, he paid the price but learned to walk alone. We watched as Charlie began to befriend those with disabilities or outcasts as if a shield to protect the person. This is the quiet yet powerful strength of Charlie.

School Years

Pictured from left: Charlie, Herb and Samuel

I think Charlie found music as his escape. For him, this has been his release…first of anger (hard rock days) and then various genres that lighten paralleling his life. His Dad plays guitar as did his Do-Dad (grand-father) and he delighted in playing with both! This gave Charlie an audience. Too shy to play in large groups, Charlie has thrilled at smaller gatherings. He can master any rock song on his electric or delight country fans with a spot-on Johnny Cash! He can’t read music but can replicate any song after hearing it. For fun he occasionally plays the banjo and even Jerry Lee on piano. He is gifted!

The Fathers Role

My husband is a great father. This has been instrumental in both our sons development. Herb has a quiet strength and his skill as a carpenter offered Charlie an alternative to occupy weekends. Together, Herb, Sam and Charlie built a house together on a plot of land in the country. They learned teamwork and the value of hard work in a different way than typical high school sports. It worked. Together they enjoyed starry nights, bonfires and raising the walls of what their hands had built. Finding something you can do together (not everyone is a carpenter) is instrumental. Occupy their time when no one else will.

Becoming His Own Man

Today, Charlie is 27 years old. He has overcome the shadows and quietly stepped into manhood. He works as a Front End/Customer Services Manager for Hobby Lobby and looks forward to growing with a company that serves. He is kind, Godly and delights in his brother’s company. He notices those who are outcasts and aids them quietly. He stands firm and doesn’t tolerate bullies, rightfully so. To end (and I’m a proud Mom so I could go on and on) this blog I would like to share an unexpected outcome that brings unexpected joy. Less than a year ago, one of those neighborhood childhood bullies approached Charlie and asked for about an hour of his time. Charlie accepted and they met. He asked Charlie for forgiveness for what he and his family had perpetrated on ours. Especially on Charlie as he took the unpopular path of defending his brother. It made an impression. Quite an impression. Charlie forgave and today they meet on occasion and have become friends. This is why I wanted so badly to tell the story of our Charlie. He allowed me permission (for the first time) so I jumped on it!

Charlie has helped me in so many ways. He has stood up for me many times during the middle school years when bullies were rampant. In addition, he has taught me to project that same kindness for the underdog. He is an excellent brother and I couldn’t ask for a better sibling.

Samuel Allen

An Open Discussion: Growing Up with an Autistic Brother

Below is a Q & A with Charlie and after that, we offer you expert advice, several resources and checklists for your journey as the”sibling”.

Q & A with Charlie

How does feel to have a brother with Autism? It doesn’t feel any different than having a neurotypical brother. I don’t know any other way. I see Sam as my brother period.

What have been the challenges as you went through school age years together? Isolation from peers mainly. I was known as “the brother of the ‘weird/different one”. One example: in our neighborhood when other kids were outside playing, they would say I couldn’t play with them because my brother was retarded. That hurt. While it hurt, it made me become closer to my brother. I would rather be closer to my brother with autism than close to fake friends who isolate because of autism. Early on, I knew that wasn’t kind nor the way I wanted to be.

How did you handle the isolation? I turned to music. Specifically guitar. First it was electric. I let my emotions out on the electric guitar. Early on, I had anger due to my brothers bullies so I played hard rock music. Think Ozzy Osborne’s guitarist Randy Rhoads. Later, I found a love of acoustic guitar and became inspired by the music of Johnny Cash. The music truly helped me cope with the isolation from my peers, now I just enjoy playing.

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I’ve learned something today. The terms “High-Functioning” or “Low-Functioning” are not acceptable. The use of these terms has not been an intentional act to cause harm or insult, nor should be confused with those purposefully intending to insult (a different category altogether). Learn, with me, that using a functioning classification of terms now is offensive to the very audience we work so hard to assist. Let’s get educated together.

The broad term “Autism” is now used world-wide and text-booked by the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5-TR) which is the standard classification of mental disorders used by mental health professionals in the United States. When my son Samuel was diagnosed over 20 years ago, the term was Asperger Syndrome or High Functioning Autism. These terms are still on his medical papers, however, he has Autism and now states so when asked.

We’ve Evolved and that’s a Good Thing!

As the saying goes, “we’ve come a long way baby”. I think we should first look at the motive behind using a word that is not longer acceptable. Know there is a period of transition, we just have to look how far we’ve come. Many good people have spoken out on behalf of those whose voices have been unheard. I’ve known many heroes of this sort in my lifetime, those on the spectrum and neurotypicals alike. By looking back, we may ‘cringe’ at previous words used but we must also look at the motive. Such a clip that ran national from Barbra Streisand, who in the early 70’s spoke out in a PSA on behalf of others but used the “R” word to do so. Her motives were and still are good but she, along with everyone else, had a big learning curve at how to address those with Autism.

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The year was 2001 and we had already suspected our son Samuel had Autism. It took his first few years of elementary school to gather all the peculiarities, live through seemingly insurmountable challenges, and process his decline in daily function until the clarity of the Autism Spectrum Disorder diagnosis came into full focus. It was the year “A Beautiful Mind” was released, and the “punchbowl scene” grabbed me as though I could finally explain to the world around me how my son acts and is reacted to. The clinic, where Sam received his diagnosis, is located in San Antonio Texas and dedicates itself entirely to children with autism.

Then called, The Village of Hope, it later became known as The Autism Community Network. Dr. Chris Johnson Plauche was the head of the clinic and also served on the National Board of Pediatrics. I brought to her attention, with great enthusiasm, the opening scene of “A Beautiful Mind” and she and her fellow Doctors around the world had also become intrigued with this film and the accurate portrayal of John Nash and more specifically, Asperger Syndrome. Of course, time would change the medical profession’s description of Asperger Syndrome since the DSM-5 reclassification of a more broad umbrella of ASD, still, there was a portrayal of my son that I could finally share with family, friends and educators. It made an impact on our lives.

The Punchbowl Scene from “A Beautiful Mind”

The Punchbowl Scene

The punchbowl scene, as I like to call it, introduces the young mathematician John Nash, to his fellow college students. As a Mom to someone with Autism, you feel immediately the characters awkwardness among his peers. HIs hand gestures when trying to think, the looks he receives after he speaks, and the awkwardness of all social interactions displays a “bullseye” to what our family experiences. Russell Crowe was phenomenal portraying Nash, he certainly did his homework on Autism and all the mannerisms such as an awkward gait, conversation and avoidance of people.

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We produced the documentary we wish we had upon learning our son was on the Autism Spectrum. What is High Functioning Autism (then called Asperger Syndrome), and how will it affect my child, their education and overall life? What can I do as a parent to assist in identifying the comorbidities that certainly will go along with ASD and then get the tools needed to hurdle over the obstacles? Tips for getting through the school-age years and ultimately…will they ever be independent and how soon should preparation begin? So many questions…

The path we were blindly forging 28 years ago and will forever maintain, is one we want to share. May you learn from our mistakes and reference methods from our successes. It is my hope that our journey will both ease and enrich yours.    

We wrote and produced the documentary 10 years ago with free showings in many theatres across Texas. Sinclair Broadcastings WOAI-TV aired the program as did PBS/KLRN offered free livestream for 3 years straight! Many school districts provide it as training and Doctors recommend it for newly diagnosed patients. It’s a great overview toward understanding and navigating Autism, more specifically the type that often gets overlooked or misdiagnosed, HFA or Asperger Syndrome. The content is very relevant, especially for those newly diagnosed, suspect autism or plowing through the school-age years.

Purchase Here

Coping to Excelling documentary sheds light on the topic of High-Functioning Autism and Asperger’s Syndrome in school-aged children by way of reenactments, animation and straight-to-the-point interviews. This engaging program allows the viewer to ‘see through the eyes’ of those on the high end of the autism spectrum while getting advice from experts successfully navigating life on the spectrum like Dr. Temple Grandin, Terrilie Tatum, Samuel Allen & Jennifer McIlwee Myers, or from experts in the field of Autism, Dr. Tony Attwood, Dr. Chris Plauche-Johnson, Dr. Janessa Manning, educators and many more!

“I would strongly recommend the Coping to Excelling DVD not only for parents, especially those of a newly diagnosed child, but also for teachers and professionals!”

– Dr. Tony Attwood

Coping to Excelling, is divided into chapters dealing with the basics of high-functioning autism and Asperger’s, maintaining the family unit, education options, bullying and social development. The “chapters” may be viewed independently or the entire Documentary (lasting 68 minutes) may be viewed in it’s entirety.

Chapters include:

  • Understanding High-Functioning Autism or Asperger Syndrome – a broad overview
  • The Family Unit – The importance thereof
  • Choices in Education – Pro’s and con’s of all methods
  • Bullying – re-enactments and solutions
  • Social Development – suggestions and tools from the experts

“We are starting to understand the functions of the brain and we realize that Autism really is neurobiological — different wiring, miswiring, atypical wiring, whatever you want to call it. We are in the fetal stage in understanding all of this and I think that once we understand this more, we will be able to subtype this Autism spectrum. Right now we know for sure that folks with Aspergers have atypical function in the Fusiform Gyrus which is the part of the brain that emotionally recognizes familiar people.”

-Dr. Chris Plauche-Johnson/American Academy of Pediatrics Council on Children With Disabilities

In the following video excerpt from “Coping to Excelling” it is explained that the frontal lobe of the brain, called the Fusiform Gyrus, is different in both anatomy and function, often confusing the person with Autism as how to respond. Attempting to “read expressions” is often a challenge for those on the Autism Spectrum. The reason is scientific, and not a choice the person is making as you’ll see in the Coping to Excelling excerpt below.

Give the gift of information and enlightenment!

The DVD Documentary “Coping to Excelling: Solutions for School-Age Children Diagnosed with High-Functioning Autism or Asperger Syndrome” may be purchased here for $24.95

Purchase Here

PRODUCT DETAILS ACTORS: DR. TONY ATTWOOD, ASPIE SAM ALLEN, JENNIFER MCILWEE MYERS, DR. CHRIS JOHNSON, BILLY EDWARDS & DR. TEMPLE GRANDINDIRECTORS: JENNIFER ALLENFORMAT: DOLBY, DIGITAL SOUNDREGION: REGION 1 (U.S. AND CANADA ONLY. READ MORE ABOUT DVD FORMATS.)NUMBER OF DISCS: 1STUDIO: ALLEN PRODUCTIONSRUN TIME: 68 MINUTESAVERAGE CUSTOMER REVIEW: 5.0 OUT OF 5 STARS  

Note: This was one of our most popular posts and we thought it worthwhile to share again… 

Occasionally in life, if you are lucky, you brush alongside greatness. Not celebrity, but greatness. A person truly inspired to invent, revolutionize, and create with the added momentum to actually implement their gift toward worldwide betterment.

I was blessed to have been afforded many hours with such greatness.

Eustacia Cutler was born into a privilege that most only have viewed actress Grace Kelly portray on film. Her book, A Thorn in My Pocket, depicts her life in a nostalgia that few today can even begin to imagine. Her Cotillion, the Dedham Polo Club, times at the Vineyard, life at Cambridge, Harvard, and stories of shared company of notables such as Winston Churchill, George Gershwin and Robert Frost. Talk more with Eustacia, and you will learn of her father’s invention revolutionizing flight. However, all of this is not the sum of the greatness of Ms Cutler. You’ve heard the statement not everything that glitters is gold? You see, Eustacia was married and had 4 children, one of whom had Autism.

Eustacia-Cutler
Eustacia Cutler/photo provided by Future Horizons

In the 50s the pressure to institutionalize such a child came from doctors and family members. But when the pressure came from her husband, she went completely against the grain for the sake of her child, Temple.

Yes, as most of you know Eustacia Cutler is the mother of Dr. Temple Grandin. Dr. Grandin who went on to revolutionize the cattle industry as well as turn the world’s perception of Autism on its ear. Most of this information you probably already know, but the part you do not know is the day I was afforded time alongside Eustacia Cutler.

The 23rd Annual Texas Autism Conference was held in Corpus Christi this past week, and Sam and I had been asked to speak at one of the break-out sessions. The keynote speaker was Eustacia Cutler, who at the age of 88 offered such valuable and insightful information to the thirsty crowd of educators, parents and professionals, they were brought to their feet more than once. Her clarity, concern and connection with all in the room (primarily the mothers) intrigued my autistic son, Sam who was one of 4 to jump at the chance when the offer came to come up to the podium alongside her for a personal Q & A. When Sam (one of very few males in attendance) approached her and announced his name, and that he had Aspergers Syndrome the applause resonated with acceptance. Sam poised the question if Ms. Cutler was familiar with Moore’s Law which states that technology will grow at an exponential rate and if so, how does she perceive it will affect people with aspergers? Without missing a beat and looking my son straight in the eye she stated we, as humans, have a challenge ahead of us. Technology is essential, but perhaps Sam could be a forerunner bearing the seemingly impossible task of keeping the human factor within the technology field.

Her mind ever-sharp and in the moment allowed for many ‘ahh’ moments to walk away with. Here are just a few:

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Attempting to “read expressions” is often a challenge for those on the Autism Spectrum. The reason is scientific, and not a choice the person is making. This fact helped me better understand raising my son Sam who is diagnosed with ASD. In the following video excerpt from “Coping to Excelling” documentary, it is explained that the frontal lobe of the brain, called the Fusiform Gyrus, is different in both anatomy and function, often confusing the person with Autism as how to respond.

Excerpt from “Coping to Excelling”

Reading facial expressions is a learned behavior and may be taught, early on, by way of play acting or by cards showing different facial reactions. We did this very thing with Sam and now, at age 28, he is able to navigate among neurotypicals in social settings.

You can teach Teach Turn-Taking Skills which will help with social behaviors. It is suggested to start with:

1.Talk Stick – who has the stick, it is their turn to speak.

2.Board/Video Games – this is all about turn taking. You will build essential turn taking skills.

3.Set Sayings: “My Turn, Your Turn” – This allows the child to learn when it is time to speak and when it is time to listen.

4.Conversation Prompt/Talk Card – For conversations outside of their particular interests, this helps them to hear others and what they are saying. At the very least, learning turn taking skills.

5.Video Modeling – My son learned so much about various personalities by watching programming. There was a cartoon were he still references behaviors by these personalities on the little screen. We had discussions many times, and still do, about a persons behavior mirrored from that very show.

Alix Generous showed us, through picture example, how difficult it is to read facial expressions.

Aspergers youth process information differently than their neuro-typical peers. More specifically, they generally think in a visual, concrete, detail-oriented manner for every task. They like to know every detail about something, especially when it is critical to survival and to excellence at a given task; driving encompasses both survival and excellence.

Driver’s education courses and books serve as necessary and insightful preparatory activities for the inexperienced and exceptional driver. Further, each driver has different habits and preferences, good and bad. When a driver or parent uses these habits advantageously, they serve as indicators for level of comfort and as foreshadowers of future mistakes.

Among the most common and serious issues that Aspergers youth face is the fact that many of them do not always think fast enough to make snap decisions. This issue especially applies when Aspergers drivers travel in unfamiliar places in general.

For example: an Aspergers driver who usually travels on two-lane in-state roadways near his home would likely have trouble navigating through a series of one-way city streets in Baltimore, MD, considering that he does not typically watch out for one-way signs there.

As a safeguard, they desire to stick with the same few routes every day because they fit into their pre-established driving parameters. These parameters could include the avoidance of bridges due to fear of heights or bumpy roads due to sensory overload caused by bouncing in the seat.

Let’s face it, unpleasant stimulation and loss of direction often triggers meltdowns and panic attacks in the Aspergers driver, thereby further clouding his judgment. Behind the wheel, one bad situation leads to another.

To resolve these issues, there are actions that parents and Aspergers drivers can both take to make judgment clear in order to ensure safe travels.

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Such a title makes for a bold statement but also dictates a life-changing action. When my son Sam was first diagnosed with Autism Spectrum Disorder (then, named Asperger Syndrome) our lives certainly changed. Though almost 20 years ago, much the same triumphs and challenges still exist for him but on a different level. One thing that proved to be most significant, if not monumental, was the moment I realized society expected one thing from my child, and the Autism dictated a much different path.

Clearly I came to this realization just as if I came to a fork in the road. I would act to accommodate the disapproving people or I would embrace all that was my child.

We Chose Sam

By doing so, there was an immediate relief. Relief from reacting to looks of disapproval to out and out judgmental comments that most certainly came from a place of never having a child on the spectrum. There were surprisingly some neighbors, family, strangers, teachers and especially other parents who would condescend his actions and that of mine as his mother. This took me by surprise.

Looking back and with a bit more wisdom, I realize they were not acting out of love nor even compassion but with an unkind heart and hurtful tongue that would probably change in an instant should Autism come into their lives as well. So unsolicited comments shouldn’t matter, but they so hurt. You as the parent already have a lot on your plate, you have to navigate all that Autism requires and reacting to these actions of others seems nothing but toxic that you try to absorb on behalf of your child. Exhausting!

The Fork in the Road

So coming to that fork in the road you must think, do I try an accommodate the negative if not naive people or do I simply choose my child and their heart desire and will-being. Truly it seemed (and still does) as simple as a choice.

By choosing your child it not only offers the freeing relief of truly ignoring the unwelcomed ‘suggestions’ of others, but allows your energy bank time to focus on your child and helping them develop their own lives! For example, if your child is hyper focused on astronomy, lay a blanket in the front yard and together watch the stars at night. No matter what neighbors might think.

If the interest turns to trains, together make a trip to a train museum or find a local railway in which to ride together. Let go of worrying what others may think. You’ll not only begin a freeing relationship with your child, you will also begin their foundation to find the specialized interest that may someday become their occupation.

I truly love a statement that Dr. Temple Grandin makes often, “it’s these specialized interests that often lead to a source of income for those on the Autism Spectrum.”

By choosing your child, you instill their confidence. You are showing them, by example, that their world may need to learn the skills to get along with their neurotypical peers, but their rhythm is their own. Help them find their unique place into the world and you’ll discover your scope has increased substantially in the process.