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

Using Choice to Increase Academic Success

Topic cards are similar to scripts in that they can help students engage in a variety of topics, beyond their own interests. They are different in that they include just a few words that describe a topic that launch a student or group students in a particular direction. 

Using Choice to Increase Academic Success

A teacher had created a special lunch group to help a student at the middle school level engage in appropriate teen conversations. She had one main interest and it would dominate every conversation. Her interest was in princesses and everything having to do with them. For most young teen girls, princesses were not much of an interesting topic for them.

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Embarrassment is a powerful emotion. When we are in a social situation and feel ashamed, it’s not possible to control our reaction. After all, you can’t stop yourself from blushing, if that’s one of your responses to embarrassment.

In states of embarrassment people want to hide, become invisible, or, as the phrase goes, want to dig a hole and disappear in it. There is another phrase people use when talking about a moment of embarrassment: “I didn’t know where to look.”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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As you are in the midst of family & social gatherings, we offer you our best on preparing for the potential nightmares of sensory overloads and societal expectations. The change in routine is the biggest difficulty during the holidays. Below are suggestions for you or for those you think might need the awareness most!
-The Staff at Aspergers101

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Anxiety symptoms and reactions are very common in individuals with autism spectrum disorder (ASD). They can interfere with functioning across home, community and school settings. Scientific studies have found that from 11 to 84 percent of youth with autism suffer from anxiety symptoms – intense fear, trouble concentrating, rapid heartbeat, tension, restlessness or sleeplessness.

Lisa Rogers with Educating Diverse Learners answers a reader’s question about helping her son overcome his daily stressor. 

Q: Dear Lisa,

My son has fears. One thought gives him daily anxiety: that of his pants not staying up. We tried belts that he buckles too tightly. He still fears the pants will fall and the buckle gives extra sensory problems. We tried sweatpants that he ties tightly, still fearful. All day he hikes his pants up. I tried to show him the pants can’t fall down but this doesn’t help. He also insists on wearing underwear two sizes too big. He is 8 and diagnosed as PDD-NOS. Could you direct me to any information to help him? This fear is causing multiple meltdowns daily. I don’t know what to do. Thank you, -Anonymous

A: Dear Mom or Dad,

Multiple meltdowns each day can certainly take its toll on your son and your family. I understand how critical this issue is for you and will do my best to provide helpful information for you to consider.

In order to be most helpful, I do need to ask a few questions first.

  • Is your son able to explain in any way what is causing or contributing to this fear? You mention that this is a current situation and so any insight about the reason for this development will be helpful. As you know, children on the autism spectrum are often rule-driven and literal in their interpretation of language. Perhaps something an adult said with good intentions about the importance of keeping your pants up or a scene from a movie could be a root cause? On the surface this might seem silly, but this can help in better understanding your son and his very real fear.
  • If your son is able to communicate through words or pictures, you might try cartooning as a way to acquire insight. When he is calm and all is well, you can sit together and draw a cartoon where you ask him to describe his thoughts while he is walking with his pants snug and tight around his waist. If not too stressful for him, you could even draw a picture with pants falling down on a stick figure and ask him to describe his ideas/feelings about this.
  • Have you already tried suspenders or even overalls to provide a sense of security beyond a belt or tie? It sounds like there are compounding sensory issues and so these might not be feasible options.

For now, here are a few ideas to consider . . .

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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

employment, employer training

As part of our continued segment on Employment, today we bring you a sample of ASTEP’s (Asperger Syndrome Training & Employment Partnership) training offerings for Employers.

employment, employer training

Seeking employment is a crucial topic for those with Aspergers and High Functioning Autism. Let’s look at the critical tools, tips, and training for both employers hiring potential employees with Aspergers, and for those on the spectrum searching for employment. It is important to prepare yourself for the workplace, and the initial interview. By understanding the view of the employer, you can collect a set of skills and information that will help you become a desirable employee to the place of work you are applying, and a successful sustained work-life.

It is also crucial for employers to have the knowledge and tools necessary in fully utilizing and incorporating their employees with Aspergers or High Functioning Autism.

An interview is a two-way street. (A polite street, with traffic rules.)

Ask questions. The employer should, and will typically, provide an opportunity for you to ask questions at or near the end of the interview.

Always prepare questions to ask. 

Having no questions prepared sends the message that you have no independent thought process, are ill-prepared, or some combination of the two.

Employers make judgments about you based on the questions you ask. 

Have you done your research on the organization? (If yes, good.) Are you asking dull questions that you can have answered from an internet search? (Not good.) Are your questions intelligent, thoughtful and cordial? (Very good.)

How many questions to ask? 

There’s no set number. It’s not a formula. It really depends on what you need to know. A good rule of thumb is to enter an interview with three to five questions that you are prepared to discuss. You may in fact have 20 questions on your mind, but there may not be sufficient time allotted to cover that many questions. So, prioritize your questions based on the interview situation:

  • Is this the first interview? Ask for information that matters most early.
  • Is this the second interview? By now you should know the basics, so ask more probing questions.
  • Is this an all-day interview during which you are meeting with different groups and individuals? Ask questions that fit the roles of each individual and ask one question to everyone you meet with so you can compare responses.

Show you’ve done your homework. 

Example: “I read on the company website that employees recently presented at conference XX. Is that a typical opportunity in the job for which I am interviewing?”

Know the nature of the organization and appropriate terminology. 

Not all employing organizations are “companies.” Governmental agencies and not-for-profit organizations are usually not referred to as companies. Most educational institutions are not for-profit (although some are), and may call themselves schools, colleges, universities, institutions, etc. Some for-profit organizations may call themselves firms or businesses or agencies.

You will appear more prepared if you use appropriate terminology as used by the specific organization. 

Some of your prepared questions may be answered during the course of an interview. If this happens, you can simply state something to the effect that, you were interested in knowing about XX, but that was addressed during the interview and express appreciation for the thorough information you were given. You can also ask for additional clarification if appropriate.

Do not ask questions that are clearly answered on the employer’s web site or in any literature provided by the employer to you. 

This would simply reveal that you did not prepare for the interview, and you are wasting the employer’s time by asking these questions.

Good questions are open-ended, and cannot be answered with a simple “yes” or “no.” 

If you are having trouble developing questions, consider the following samples as food for thought to help you consider your own questions. However, don’t ask a question if you are not truly interested in the answer; it will be obvious to the employer.

Your questions should show your own thought process.

  • What are the company’s strengths and weaknesses compared to its competition?
  • How does upper management view the role and importance of this department and this position?
  • What is the organization’s plan for the next five years, and how does this department fit in?
  • Could you explain your organizational structure?
  • What do you most enjoy about your work with this company?
  • How have various types of decisions been made?
  • What are the various ways employees communicate with one another to carry out their work?
  • How will my leadership responsibilities and performance be measured? By whom?
  • What are the day-to-day responsibilities of this job?
  • Can you please describe the company’s management style and the type of employee who fits well with it?
  • What are some of the skills and abilities necessary for someone to succeed in this job?

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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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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.

My son, now 30yrs old has had difficulties since childhood, and we know he has Aspergers. During his teens he was extremely angry and sad but he came through this period. Today he lives independently, has his own home and car but for the past year he has not spoken at all to anyone. His life is restricted to his job, which is in jeopardy because of his refusal to speak to his co-workers. He was visiting me on Sunday but now that has ended. He literally speaks less than a “Yes” or “No” to anyone. We have been to social service, doctors, clinicians, speech therapists, psychologists, and he refuses to see any of them. Everything I read online is about children. Any advice?

-Doug

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