The Sibling(s): Born Into An ASD World

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.

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!

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 22 years old. He has overcome the shadows and quietly stepped into manhood. He works for H-E-B 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

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.

Aspergers101 presents: Dr. Temple Grandin Tips for Interviewing Success

The :30 “WOW”

Statistically, 75% of persons diagnosed with High Functioning Autism / Asperger Syndrome are either under or unemployed. This is a travesty for them, their families, society and businesses. These staggering numbers cannot be ignored! There are various reasons for unemployment mainly the challenges that come with autism such as sensory sensitivities and workplace social expectations.

However, alongside challenges, there are many positive traits such as:

  • Ability to focus intensely for long periods
  • Enhanced learning ability
  • Deep knowledge of an obscure or difficult subject resulting in success scholastically and professionally when channeled.
  • Honest & hard workers who make for excellent employees when painstaking & methodical analysis are required.

Aspergers101 is proud to offer our readers suggested ways to overcome employment challenges, specifically the interview process. Dr. Temple Grandin is known worldwide for her successes with invention but in order to get to that plateau, she had to self test ways to get her foot in the employment door. As a person diagnosed with Autism, Temple share those personal techniques and interview skills below.

Interview

Temple’s Suggestions:

Don’t go into an interview cold  turkey…prepare a well thought out presentation!

Neatly show your work, presentations, articles, etc.

Wow them with your work examples in :30!







10 Steps for ASD College Students to Make the Most of Student Activities

When people think of student activities for Aspergers students, especially those in college, some may feel tempted to believe that such activities are not suitable for them. Students with Aspergers could feel hindered by a number of issues, whether it be social anxiety, time management, lack of awareness, or longer study sessions due to slower information processing, to name a few.

College, students, activities, organizations

The ASD student and/or those around them too often assume that such issues would prevent them from getting anything out of an activity. Consequently, this commonly held false assumption only makes it so that the Asperger’s student likely does not develop the inclination to do much beyond their comfort zones.

I suggest 10 steps that can help the ASD college student get beyond this:

  1. Take inventory of organizations in which you could get involved.

    • Ask a residence hall worker or go to the activities office and get a list of potential organizations and begin research
    • Go to events, such as student activities nights, whose purpose is to expose students or the public to organizations or look on website if there is one
  1. Explore the organizations online and then engage with them (ideal for introverts).

    • Usually, word of mouth and stories from current friends/acquaintances establishes links and piques interests of those with ASD, despite any general reluctance for involvement, as well as (stereotypically) restricted interests
  1. Do your homework: Understand the organization’s missions, visions, values, member testimonials, events, contact information.

    • Identify primary contacts
      • First priority to contact is a person in charge, or a group facilitator
    • Understand the steps to joining the organization
  1. Introduce yourself or get an introduction from somebody if necessary.

    • Both scenarios encompass a self-introduction and this is critical because it allows others to acknowledge and accept the true personality of the Asperger’s student

Tonight! Social Development

Join Aspergers101 on Facebook for Livestream Series

There are many services available to help children with AS develop their skills and become more successful. Social skill groups, pragmatic speech and language therapy, occupational therapy, and special education services may all play a role in meeting the needs of your child. Guest speaker, Dr. Louise O’Donnell from UT Health Science Center, shares valuable insights into the autistic brain and offer solutions at every stage of a persons life when challenged with social integration. Host(s) Jennifer and Samuel Allen (Aspergers101) discuss effective strategies to teach social skills and address behavior are as varied and diverse as the unique individuals who make up the AS population and lead a panel of experts into the topic at programs end. (pre-recorded/runtime 1:31:00) 

There are no fee(s) to join us…see you on Aspergers101 Facebook tonight at 7p! (CST)

Animal Shelter Volunteer Work for Kids and Teens with Autism: Master Social and Job Skills

Volunteering at an animal shelter is a great way for tweens, teens and young adults on the autism spectrum to practice and improve social and job skills. They also learn responsibility and a respect for animals. As visitors come into animal shelters to look at animals available for adoption, it’s the perfect place for teens to improve face-to-face communication. The experience they gain volunteering at an animal shelter molds them into more effective volunteers and prepares them for the workforce.

Animal Shelter

Volunteering at an animal shelter is a fantastic opportunity, especially for teens with Aspergers. It has been widely discussed that children, teens, and adults with Aspergers form strong bonds with pets, and can greatly benefit from animal companionship.

Their time spent volunteering will produce better outcomes (adoptions) if they have good communication skills. Here are some top social skills from my book to ensure teens maximize the chance of an animal getting adopted, and master important social and job skills:

1. Smile and Say Hello:

When you see another person, whether a co-volunteer, staff member or visitor, smile and say “Hello”. Your smile will set the tone for positive future interactions and brighten the person’s day. It may even lead to an animal getting adopted or a financial donation. It all starts with a smile!

I used to volunteer at an animal shelter walking dogs. Often I would be in the back of the shelter bringing a dog in or taking one out. There would be people in the back of the animal shelter looking for animals to possibly adopt. I would smile and say “Hello”. I’d ask if they had questions about any of the dogs I walked. Often they would. After telling them about the animals, I’d suggest they spend time with any animal they were interested in. About 70% of the time they’d end up adopting an animal just because I engaged them and was able to provide helpful information. You can do the same thing!

2. Turn Off the Electronics:

When you are volunteering, keep your phone at home, or turned off, on silent or vibrate mode, and out of sight. This is part of being a professional volunteer and lays the foundation for good work habits.

3. Say Please and Thank You:

Autism in the workforce: I am Autistic, I am not broken

By: Rick Jacobs

 It is palpable, that moment when you tell someone or a group of professionals you are on the Autism Spectrum. As if you just vomited on their shoes, they get a look of shock and concern. Their speech patterns change. Their facial expressions alter. You are no longer the same person that was hired or that started the conversation.

Often, you hear things like “I never would have guessed,” “You don’t look Autistic,” or they simply start talking to you like you suddenly became a five-year old with a limited vocabulary and a hearing problem.

I am Autistic, I am not damaged, I am not less intelligent. I am just a little different than you are. I see things differently, experience things differently, and struggle with social conventions. 

I understand the complex, hyper-detailed volumes of information that I am surrounded by. I don’t understand corporate culture or how to conform to workplace norms. I understand strategy, nuance of facts, projections, and planning. I don’t understand the look on your face or if you are joking with me or not. I am flat in affect when listening and processing, which may look like I am checked out or not paying attention.

I am super sensitive to my surroundings and have intense feelings, but I don’t let them rule me. I seek facts, I want to know that what I know is true and correct, not that I am right. I have intense intuition and gut feelings, I just don’t act on it until I have examined the facts, seen the possible options and outcomes, and have a plan for mitigating potential issues. I love stupid loud crazy music concerts, but a loud social gathering or cubicle space stresses me out, so no, I don’t want to go to the bar to hang out after work.

The problem with being an older Autism Spectrum person in a corporate world is that you are either weird or a problem employee because you don’t socialize like everyone else or you are a special case that everyone must tiptoe around and tread lightly. I am also often seen as not promotable, because of the belief that I might not understand how to connect with people. Actually, I connect very well and quickly, except I am also very aware of BS and will call it out. Don’t lie to me. I know.

Greta Thunberg Says Asperger’s Is Her Superpower

by: MOLLY LONGMAN

While dozens of world leaders made their voices heard at the UN Climate Action summit in New York City Monday, it was a 16-year-old’s rallying cry that had people — including the president — talking.

Photo: Alex Wong: Getty Images

Swedish activist Greta Thunberg is known internationally for continuously and courageously working to combat climate change. She was the face of the Global Climate Strikes, inspiring millions of people — more specifically, young people — to rally in more than 150 countries, as CBS News reports. And, she says her Asperger’s syndrome diagnosis is her “superpower.”She told  “CBS This Morning” that Asperger’s, which is a condition on the autism spectrum that affects social interaction and nonverbal communication, has helped her deliver her message to the masses. “What I want people to do now is to become aware of the crisis that is here,” she said.

She’s not afraid to speak up for what she believes in, even if she’s talking to VIPs of parliaments and governments. “I just know what is right and I want to do what is right,” she told CBS. “I want to make sure I have done anything, everything in my power to stop this crisis from happening… I have Asperger’s, I’m on the autism spectrum, so I don’t really care about social codes that way.”

Before her name became internationally recognized, she hadn’t shared about being on the autism spectrum, in part, because she knew “many ignorant people still see it as an ‘illness’, or something negative,” she tweeted. Asperger’s was officially categorized as a diagnosis on the autism spectrum 2013, according to the Autism Society.

Asperger’s, Depression and College Students

Depression is most common in adolescents and young adults with Asperger’s, and particularly in those with stronger intellectual and verbal skills. That means college students with Asperger’s are at a very high risk for depression. This is particularly true for freshmen, who are transitioning to the college experience. Although I’ve seen this in later years as well when students are dealing with more challenging classes, social issues, and upcoming graduation as triggers.

Let me tell you about one college student’s experience with depression:

Franklin went off to a good college based on his excellent academics in high school. However, he’d been provided with executive function scaffolding all through high school. His parents and a teacher had helped him organize his time and initiate his work. The school counselor and his parents had feedback from teachers if he was falling behind on assignments.

In college, he was on his own.

He was supposed to check in with the disability office, but he resisted being seen as needing help. Franklin had challenging classes and had taken on a very full load of five classes; he had always set his standards and expectations of himself very high. Franklin began falling behind in writing papers for his English literature class because writing was difficult and he wrote slowly. His effort was going into writing, so he fell behind on the reading. He tended to procrastinate as the pile of work grew. Franklin was embarrassed at being behind, so he stopped going to English. He also was stressed by feeling at a loss in terms of the 24/7 social demands.

As you might expect, all of this stress was a trigger for depression. In Franklin’s mind, one was either a success or a failure, and he was a complete failure.

Autism: Effective Treatment Options

By: The Autism Science Foundation

Scientists agree that the earlier in life a child receives early intervention services the better the child’s prognosis. All children with autism can benefit from early intervention, and some may gain enough skills to be able to attend mainstream school. Research tells us that early intervention in an appropriate educational setting for at least two years prior to the start of school can result in significant improvements for many young children with autism spectrum disorders (ASD). As soon as autism is diagnosed, early intervention instruction should begin. Effective programs focus on developing communication, social, and cognitive skills.

sensory

Early diagnosis of ASD, coupled with swift and effective intervention, is paramount to achieving the best possible prognosis for the child. Even at ages as young as six months, diagnosis of ASD is possible. Regular screenings by pediatric psychiatrists are recommended by the Centers for Disease Control and Prevention (CDC). Even if your child is not diagnosed with an ASD before the age of 3, under the Individuals with Disabilities Education Act (IDEA), your child may be eligible for services provided by your state. In addition, many insurance companies will provide additional assistance for the coverage of proven therapies. More information on autism and insurance can be found here.

The most effective treatments available today are applied behavioral analysis (ABA), occupational therapy, speech therapy, physical therapy, and pharmacological therapy. Treatment works to minimize the impact of the core features and associated deficits of ASD and to maximize functional independence and quality of life. In 2012, the Missouri Guidelines Initiative summarized the findings from 6 reviews on behavioral and pharmacological interventions in autism. The consensus paper includes current evidence of what interventions have been studied and shown effective, why or why not, and can be found here.

Applied Behavioral Analysis (ABA) works to systematically change behavior based on principles of learning derived from behavioral psychology. ABA encourages positive behaviors and discourages negative behaviors. In addition, ABA teaches new skills and applies those skills to new situations

Early Intensive Behavioral Intervention (EIBI) is a type of ABA for very young children with an ASD, usually younger than five, often younger than three.