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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Anxiety-related symptoms are frequent concerns in children, adolescents and adults with Aspergers and HFA, which may be treatable with Cognitive Behavioral Therapy.

the pain

Anxiety is commonly found in high functioning individuals on the spectrum in particular because they have an increased awareness of their own social difficulties. This cognitive awareness may intensify their anxiety toward social interaction and promote isolation.

Recent numbers found that 11-84% of children on the autism spectrum experience impairing anxiety, while only 4.7% of all children aged 3-17 years have experienced anxiety.

Cognitive Behavioral Therapy (CBT) is a type of psychotherapeutic treatment that helps individuals recognize how thoughts and feelings influence behavior and cope with these challenges.

CBT is used to treat a wide range of issues, in addition to anxiety, including:Continue Reading

Q: “Many people see children with Asperger’s and they don’t understand that their needs are lifelong. They don’t see that even if you watch your child succeed at a young age, there will be new territory to navigate as they get older and new situations arise.” This is so true, my son was diagnosed with Aspergers in the 90’s when there was not a lot of “buzz” about it. He did okay, but now as an adult he seems to be having difficulty especially with anxiety and confidence. I am worried for him, and keep directing him towards counseling, but he hasn’t yet. Any suggestions?

-Angela

adulthood

Angela,

I can completely relate to this. Near the end of my high school days, I garnered several accomplishments and awards, but college was a completely different ballgame, especially since I was four hours away from home. Once I got out of college and moved back home, the working world was a completely different situation as well, and I struggled mightily at times. Each new job, new relationship, and new situation is a challenge, but an opportunity as well. Fortunately, my family could not have been more supportive of me over the years.Continue Reading

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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with Marcia Eckerd, Ph.D.

  1. Respect yourself.   As hard as things have been, focus on your strengths. Your path, however bumpy, has gotten you the be the person you are. You are unique, and no one else can contribute your insight and perspective.
  2. Reach out for support.   If you have family or friends who “get it,” that’s terrific. If not, there’s communities of support out there on Facebook, like “The Aspergian Has An Article for That” and “Autism Support and Discussion Group”. People have had similar experiences and are working on the same issues.
  3. Advocate for yourself. No one can see inside you.   Consider how best to communicate to the person who is listening. With some people, you can probably say what you want plainly. For others, help them understand. You might try this: say something positive (I want to do a good job), then your need: (but I need a quieter place to work) and then something positive (I’ll be able to get that done). Or, another example: positive (I want us to get along), need (so I need you to be clear and not expect I know what you want), positive (that will really help).
  4. Take care of your health.  Your body is critical to your mood, your ability to think and your wellbeing. Too many people don’t get enough sleep, eat well or take the time to take care of themselves. Treat yourself to a recharging walk to somewhere you enjoy (or nap), whatever works for you.
  5.  Meditate   It’s been proven that mediation can structurally change your brain to be more stress resilient, and it’s like creating a center of calm for yourself. There’s many ways to do it (mindfulness, repeating a phrase, yoga, even walking). You’ll find great apps to lead you through mediation like Calm, Headspace and Insight Timer.
  6. Know yourself     Know your triggers for emotional and sensory overload and early warning signs in your thinking, feeling or body that say it’s getting too much. Have strategies you’ve pre-thought for calming down, whether it’s something like taking a walk, listening to music, doing a minute or two of meditation, anything that works.
  7. Have strategies    If you can’t escape going into difficult situations, have strategies for handling it. Short doses, taking time outs. Use self-advocacy to share that this situation is difficult and what might be helpful. If that doesn’t work and this situation keeps recurring, there’s something fundamentally wrong with this situation and you might have to think about how to change it.
  8. Have compassion for yourself    We all do our best and no one is perfect. You may have made mistakes and regret them but that’s how we learn. You need to give yourself the compassion you’d want to give a friend in the same situation.
  9. Let go of anger     This saying is allegedly attributed to the Buddha: He who holds onto anger is like the man who drinks poison and expects the other person to die. Anger stimulates your stress response so your autonomic nervous system stays in fight/flight mode. This is bad for your health, your immunity and your outlook on yourself and life. I’m not saying forget, just do whatever re-centers your focus on how you overcame (or can overcome) whatever obstacle you encountered. You’ve undoubtedly had some good experiences; focus on them as balancing the negative.
  10. Learn the serenity prayer.    Give me the serenity to accept what I can’t change, the courage to change what I can, and the wisdom to know the difference.

Hillary Adams and Jackie Clark presented “Bridging the Gap: Supporting Students with ASD as they Transition from College to the Workforce” at the 2014 Autism Society conference held in Indianapolis, Indiana. Representing the West Virginia Autism Training Center, Adams and Clark provided several tips and considerations for those who are about to graduate and those who support them.

Tips included:

  • Utilize campus resources related to employment, especially those services provided traditionally on college campuses through a Career Service office. Begin a relationship with that office early; don’t wait until the final year
  • Participate in mock interviews, especially if those interviews can be videotaped for critique and coaching
  • Search for employment opportunities that fit interest as well as skill
  • Become aware of accommodation needs, and learn the self-advocacy skills necessary to request them. Learn to be more interdependent, understanding who in a potential workplace could best help you when help is needed
  • Plan the transition early, and plan it with others who are invested in your future

One of the coolest tips provided by Adams and Clark was the use of a Telephone Interview Checklist. This script supports college graduates as they undergo a telephone interview with a potential employer.

The checklist does the following:Continue Reading

CHICAGO — Seyfarth Shaw, one of the city’s largest law firms, occupies nine floors of a skyscraper at 131 S. Dearborn St. Shalonda Sanders is responsible for picking up and delivering packages on each of them, plus keeping certain areas clean. It is a job she cherishes.

“I love my co-workers, all of them,” Sanders, 35, said of the 15-member office services team of which she is a part. “Downstairs,” she said, referring to the mail center, “I consider us as one.”

Sanders, who suffered brain damage when she was struck by a car as a child, was hired at Seyfarth about a year ago with the help of Best Buddies Illinois, after many years of trying unsuccessfully to gain paid employment.

The local chapter of the national nonprofit, best known for fostering one-on-one friendships between people with disabilities and a network of volunteers, had recently launched a jobs program to place people with intellectual and developmental disabilities into competitive jobs.

Best Buddies helps place intellectually disabled into competitive jobs - Chicago Tribune

Shalonda Sanders, 35, works in the mailroom delivering letters, documents and FedEx packages to law office employees at Seyfarth Shaw in Chicago. Sanders, who was hit by a car at age 9 and left with brain trauma that slurs her speech and causes some tremors, was placed in the job through Best Buddies. (Antonio Perez/Chicago Tribune/TNS)

The program, one of many attempting to tackle the massive unemployment rate among those with intellectual disabilities, is part of a movement away from what are known as sheltered programs that keep workers with disabilities apart from the mainstream workforce and often pay less than minimum wage. Its challenge is to show companies that tapping into this underused talent pool isn’t just a good thing to do, but good for the bottom line.

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We at Aspergers101 would like to thank all who’ve taken part in getting the “Driving with Autism and other Communication Impediments” initiative state-wide in Texas! Two versions of the Public Service Announcement currently are airing across Texas on both TV and radio stations. Samuel Allen/Spokesperson of the Aspergers101 Driving with Autism initiative speaks on behalf of those with Autism or other diagnosis that may be slower to respond to an officer of the law. Emma Faye Rudkin, Founder & President of Aid the Silent organization, speaks on behalf of those who are deaf or hard of hearing. The framed posters and informative tri-fold brochures are in all DPS Driver License Offices informing citizens of their option to utilize the code informing law enforcement of the diagnosis of: Autism, Asperger Syndrome, Deafness, Parkinson’s Disease, Mild Intellectual Disability, Down Syndrome, Mutism and other diagnosis.

Samuel Allen/Aspergers101
Emma Faye Rudkin/Aid the Silent

So what is a communication impediment with a Peace Officer? 
Most common diagnosis include: Autism, Asperger Syndrome, Mild intellectual disability, Deafness, Speech & languages disorders, Expressive Language Disorder, Down Syndrome, Post-Traumatic Stress Disorder, Deafness, Brain Injury or Parkinson’s Disease.

How can you get Communication Impediment with a Peace Officer on your Texas driver license or state ID?

Only two actions required:
1. Have your doctor complete and sign the Texas DPS Physician’s Statement, Form DL101, affirming the Autism, Asperger, speech disability or other appropriate diagnosis.
2. On Texas DPS driver license application KL14A/S be sure and complete line 7 on the form.

For more information go to the Texas Department of Public Safety website: https://www.dps.texas.gov/DriverLicense/commImpedimentWithPO.htm

What a blessed journey this has been for our family…to God be the Glory, great things he has done.  – Jennifer Allen/Founder & CEO Aspergers101

Individuals diagnosed with Aspergers or another autism spectrum disorder (ASD) may be presented with many challenges throughout their lives—especially during the transitional periods. As the individuals age and learn to use different skills in various environments, families, educators, medical professionals and the individuals themselves begin to anticipate the transition to adolescence and, eventually, to adulthood. Given the differences in abilities and behaviors that many individuals with Aspergers or HFA experience, it can often be overwhelming to plan for tomorrow much less several years later.

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Among the many skills that an individual must learn to successfully transition to adolescence and adulthood, daily living skills are often neglected.

Examples of daily living skills are bathing, grooming, preparing meals, managing finances, using public transportation, etc. These daily skills are necessary for independent functioning in the home and within the community.

A recent study discovered that individuals with ASD improved in daily living skills during adolescence and the early twenties. These skills plateaued around late twenties and began to decline in the early thirties—this shows the importance of honing these skills earlier in life instead of waiting until later.

Some positive findings were that inclusive schooling had a positive influence on adult outcomes. The study also found, “that vocational independence predicts improvements in autism symptoms and significant improvements in behavioral problems.” Daily living skills could also be increased by engaging in some type of work activity.

It is encouraging that daily living skills can continue to be gained at later points in development as other skills plateau. The authors suggest that more research is needed to develop behavioral and pharmacological interventions for older individuals on the autism spectrum.

While individuals with Aspergers or HFA may have challenges with the daily living skills necessary for transitional periods, it is important for their independence and quality of life to begin this journey at an early age to ensure success.

by Lupe Castañeda, M.S., BCBA

Have you thought about or experienced the transitional periods in your or your child’s life?

How did you cope with these experiences? 

Sources:

Smith L.E, Maenner, M.J. & Seltzer, M. (2012). Developmental Trajectories in Adolescents and Adults with Autism: The Case of Daily Living Skills. Journal of American Academy of Child and Adolescent Psychiatry.  51(6): 622–631.

I was standing in the post office shipping off a package when I got a burst of inspiration to take this funny picture. It uses humor to describes some of the challenges people with developmental disabilities face but it also helps me vent my frustration and address a wider issue.
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First day of school. College interviews. Job interviews.

It seems like the most important encounters that determine the quality of our life are also the most superficial. So much could go wrong in the first impression.
  • One girl I had just met told me that she thought my body language was condescending.
    • My rationalization: First off what does condescending body language even look like? I googled it because I was so perplexed and turns out condescending can only apply to language. I think she was trying to say defensive or standoffish.
  • A man who had just met and conversed with me briefly once told me that my use of vocabulary words like “tantalizing” and “perturbed” in everyday conversation makes him think I am keeping people at a distance.
    • My rationalization: I am always happy to explain things in a different way in order to clarify what I’m talking about but in this case, they did not give me the chance to clarify my idea. He just made an assumption on my intentions of using “big words” and technical terms when in actuality that is how I talk.

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When you are attending college you are going to have tough professors who at times can be unfair towards students. These professors either don’t care about your needs or are just academically tough. Having a tough professor can be intimidating for a person on the autism spectrum because those with ASD already have challenges with advocating for themselves. On top of it these students have to debate their needs with a professor who is strict.

Having tough professors is hard to deal with, and I was in your shoes as a college student, here I provide ways to help deal with tough professors.

Relax

Relax and be cautious: the class has just started and a professor acts tough to either intimidate you or motivate you to do better in the course. Never take the tough attitude to heart, it does not last long, and it’s just a tactic they use. Now the class may be difficult, which can add plenty of stress for a person on the autism spectrum disorder, but just know the toughness gets less and less as the semesters go on.

Never Give Up

I would advise you never to give up or drop the course no matter how tough the professor is or how difficult the course may be. Always know that you have support (which I will explain in detail) about how to approach a tough professor. There a resources and people in colleges out there dedicated to helping you succeed in college and getting the best help possible.

Look at the teaching style

You can learn so much from a tough teacher but their delivery of the material is important to understand as well. If the teacher just assigns busy work or book work or is rude and impatient towards the students, then you have a bad instructor. With tough teachers you learn a great deal of information and resources but the class is difficult. Be vigilant about important assignments in the course, and if the professor cannot give you a clear and precise answer about the assignments in detail, you need to seek help elsewhere. Assignments should be given out as you progress through the course as the material builds off of itself. Remember being rude and not giving clear and detailed information is not signs of toughness its signs of a bad professor.

Tough professor challenge their students

All professors in college challenge their students but each has a different way of approaching it. The best professors remember that they were once students too and don’t assign or do something that they would not do, or have not done themselves, in college. Professors believe if they challenge you, they can see your true potential, and if you gain one thing from it overall that’s growth.

Know your disability service staff

As a student with a disability you have one advantage with educational support staff. The staff is dedicated to helping you achieve your educational goals, getting you the best resources and help, and making sure you meet the academic standards of the college as a student with a disability. You can always rest assured that if you need any help with the courses and professors not meeting your disability needs or mistreating you, you know the disability staff at any college is there for you.

Know the professor’s boss

It is important when dealing with a tough, unfair or bad professor: you must know who their boss is. This could be the lead professor, department chair, or dean of that college that houses your degree plan. For example, The University of Texas at San Antonio is structured like this: my major was Criminal Justice, and I had a professor whose boss was the department chair of the Department of Criminal Justice at UTSA, and their boss was the Dean of the College of Public Policy that Criminal Justice is housed under. Know who their bosses are so that if you have any issues with a tough, unfair, biased, or bad professor you can call them, email them, visit them on campus and express your concerns about that professor. They are there for the students as well, and it is their job and your job to make sure your academic goals and the academic goals of the college are being met.

Know the professor’s office hours and emails

Know your professors’ emails and office hours and take full advantage of the office hours and emails. Show up to their office and email them as much as possible. This shows that you are determined and that you are serious about your educational needs. Those emails and office hours are for the students, and a good professor will allow you to call, email or visit them during those offices ours or set up an office meeting when the student is available. Good professors will respond to your email in a  timely manner and will be concerned with your educational learning goals as well. Take advantage of office hours and get all of your questions on the table and don’t leave until you and the professors are on the same goals and have a plan to help you succeed. If you leave with no plan go back to step 6 or 5.

Know the syllabus

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People with Asperger’s usually collect labels like ADHD, anxiety disorders, or bipolar disorder before they’re diagnosed with AS. The label that annoys me is Oppositional Defiant Disorder. Is there a difference between people whose Asperger’s-related behavior is misunderstood and ODD? I find that ODD is sometimes simply a description of behavior without a cause.

Insurers ask for diagnoses based on ICD 10, the “handbook” of diagnoses. One of the official ICD 10 descriptions of AS is that it’s a “neuropsychiatric disorder whose major manifestations is an inability to interact socially; other features include poor verbal and motor skills, single mindedness, and social withdrawal.”

ICD 10 describes ODD as a behavior disorder and a psychopathological disorder. It’s described as a “recurrent pattern of negativistic, defiant, disobedient, and hostile behavior toward authority figures.”  The criteria include “frequent occurrence of at least four of the following behaviors: losing temper, arguing with adults, actively defying or refusing to comply with requests or rules of adults, deliberately annoying others, blaming others for own mistakes, and being easily annoyed, angry or resentful.”

ICD 10 is right in my experience in describing those with Asperger’s Syndrome as “single minded.” This is a real strength when doing tasks, following rules and being honest. However, single mindedness can also include inflexibility or even severe rigidity in sticking to a point of view.

When an inflexible demand is made of an inflexible person, you have rigidity meeting rigidity. That’s not going to work. For people with AS, what’s being perceived as oppositional, hostile or rule breaking is actually more about having a fixed way of viewing the world.

Especially when rules or demands seem illogical or unfair, those with AS can dig in and stand their ground. Many with AS and NLD also have concrete or literal thinking, which adds to the mix of misunderstanding and “rule breaking.”

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