Her heart supplies flow to remote extremities not her own. Life beyond her own requires all she can give, all of the time, for the rest of her life. A new reality not familiar but all encompassing. She is the caregiver and life support for a child with autism. She is a Mother. In the shadow of the crowd she flows an internal stream of strength and resourcefulness. Joy is derived in the brief triumph of society’s perceived common performance, and sorrowful familiarity consumes her soul in clearing hurdles too high for the neurotypical masses. She is unobserved, often ridiculed, and apart from the crowd yet her strength and beauty resides above the noise of ‘normal’ and her soul finds respite in Gods gracious stronghold. She rises to her lifelong lot and delights in the fragility of life that often passes others understanding. Though often tired, her senses are keenly awake! She is a beacon, a heroine seen and respected by those, like her, forging life’s path for her child.

Sunrise by Claude Monet

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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A Quick Read

Even before the official diagnosis of Asperger’s Syndrome, we knew our son Sam walked apart from the crowd. His early intense interest in a subject matter, and not in his peers, was the perfect mix for oddity starting the early sociable elementary years.

While we, as Sam’s parents, grew to walk alongside (and later celebrate) the unique perspective Sam had on the world, it was me who was shocked to be set apart from the crowd.

(l to r) Charlie, Jennifer, Herb and Sam

The elementary years were full of field trips, lunch visits, and homeroom activities. When it came time for picking groups for the field trips, my son was not one who other mothers wanted for their sons. At this early age, most mothers were positioning their children to be the best, only with the best, and we didn’t fit their criteria.

So for many of those early years Sam and I sat alone as other mothers invited the more social children to sit with them. Support did not come in familiar places: relatives, neighbors, team sports, youth groups or, field trip Moms. In fact, it was those who were actually abusive to Sam that set the stage for above and beyond parental protection. So different from my youth or perceived visions of parenthood. After the shock and heart wrenching pain for my son, the realization sat in that I too, was isolated.

How Our Family Responded to Isolation

Our family had hit a harsh reality, so we decided to fight back in a way that did no harm to anyone, but bolstered our son’s confidence. We chose our son over the crowd. We eliminated the negative and stuck to the positives. My Mom and Dad (both have since passed) were so very supportive and loving and choose to take a big role in both our sons lives. We clung to that love and our sons were nurtured and flourished. You don’t need or should expect everyone in your family(s) to be supportive, just enjoy who does and build upon that. Together the four of us found a loving church home, become interested in all things our sons were interested in, enjoyed those who did make a conscience effort to be a positive part of our sons lives, traveled on weekends (verses attending typical soccer games), and marched to a new rhythm I had never heard before! At first it was scary, going a route we’ve never taken before. However, after removing the negatives, the anxious worry quickly subsided and Sam (and the rest of us) blossomed!

Hello to star-gazing, train following, computer lessons, pokemon’ tournaments….well you have your list too!

Being apart from the crowd became the norm and our sons both flourished.

I write this not to feel sad or ‘wallow’ in self-pity. Nor have I listed the struggles (you can refer to other posts covering that) of the journey. I write about the choice because it is that simple. Because this probably happens to many parents of a child on the spectrum. I want to encourage you to persevere and hold onto the unique qualities that are the very being of your Asperger child and to let go of any expectations you may have of others taking part. Bottom line: Forge your own path for your child and take along the handful of people who do want to be a part.

It does get easier the older they get, and the reward will be a son or daughter who knows that their uniqueness is a gift. Recently Sam was asked what it “felt” like to have Autism. His matter of fact reply was priceless: “Don’t think of Autism as a weight, think of it as a pair of wings”.

Being apart from the crowd is a great thing indeed.

By Jennifer Allen

Growing up there was nothing I wanted more in this world than for people to see me for exactly who I am, and like me for it. I drive myself mad looking for this, because identity is unstable. People change as they get older through a combination of experience, genetic predispositions, and neuroplasticity. Aspergers is one fickle diagnoses, mainly because it is susceptible to all kinds of misinterpretation.
And then this miraculous invention called Facebook came out.

Alix Generous

I joined Facebook in 2006 when it was still a relatively small community. One thing I loved about Facebook is that the social norms were different from in-person interaction, and often times made things easier on me. I can connect with people and not be criticized for my lack of eye contact or vocal tone.

I can filter my blunt comments, and assess my honesty before I say anything. Additionally, I can access hundreds of people within minutes who share my obscure interests, like Russian history or Phantom of the Opera. I think some of the first groups I joined were “addicted to piano,” and “when I was your age Pluto was a planet.” I had lived in 3 states and 2 countries at that point, and I could keep in touch with all of my friends from around the world.
Nowadays it seems like everyone I know is on Facebook and as a result, I have to keep my freak flag on a leash. Both of my grandmas are now on Facebook, and one of them said to me: “You better watch what you post because it might come back to bite you.”

What does that even mean? Do you even know how to use Facebook grandma? Turns out she did and also learned how to use an iPad way before I’d even seen one. To give you an idea of some of the posts my grandma was referring to, here is an example:

Dear girl who cheated off my exam today,
You’re a jerk.
Unfortunately for you, So am I. I put all the wrong answers in for you to copy and waited until you left to put the right ones in. It’s called studying.
sincerely,
Your passive aggressive classmate, Alix
I think social media’s impact on how we incorporate technology in our daily lives can condition us to display Asperger-type symptoms, the kind that my social skills training and family taught me not to do. Growing up my mom taught me to never use my cell phone at the table. To this day I never pull out my cell phone at a nice restaurant, even when asked to. Now when my friends and I go out, one is Instagramming their cocktail, the other answering a text from her husband, etc.
I don’t meet very many people my age who impress me with their ability to hold down a sincere conversation. I went to a youth group activity that was a meet and greet for young adults.  I knew absolutely no one. I turned to this guy next to me and asked casually “What’s your name?”. He responded with one word “Martin,” and didn’t even look me in the eye, but instead was looking down at his phone where he had Facebook open.
I was talking to a CEO who runs a prominent company, he told me that when he hires graduates he looks for people who can look him in the eye,  shake his hand, and carry on a conversation on top of meeting a few of the skills that would contribute to his company (e.g. using a computer program, or proficiency in Spanish, etc). He looks for people who have complex analytical skills or specialize in mastering one area. He could care less about the transcripts or grade point average of our degree.
There is hope for us with autism and there is a reason we should constantly strive to improve our social skills on top of pursuing our interests, because there are people who appreciate us for who we are and what we have. But in order to bridge that gap, we must have those social skills, even if Facebook and other social media is degrading the quality of interactions we have with people in person.
By Alix Generous

Though driving with an Autism diagnosis is not for everyone, many do decide to obtain their driver license and go on to live independent lives. Aspergers101 teamed with Dr. Temple Grandin to provide helpful information when considering if driving is for you, or your teen.

Long before driver education, Temple suggests first mastering your skills by practicing on a bicycle (coordination, motor skills). Then tackle driving in a safe remote area such as the country or large parking lot. You’ll begin mastering such challenging tasks, such as multi-tasking, prior to any driving on congested roadways.

One suggestion she has is that before you take a driver education course, you need to find a safe place and practice, and after that, practice even more! Getting the ‘knack’ of driving includes working on your coordination, motor skills, and multi-tasking which all come into play when learning to drive, even more so for those on the autism spectrum.

Anxiety can often be reduced (for the driver with Autism) by lots of driving practice in a safe remote location.  

– Dr. Temple Grandin

Once you’ve mastered working the brake, blinker, gas and other essential tasks while driving, you’ll then be ready to be thrown into a group/driver education training.Continue Reading

Animal Shelter

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:

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Many school students carrying the diagnosis of Asperger’s Syndrome exhibit challenges in the area of social interactions and social skills. These social difficulties are worrisome for parents and family members who look for supports to address these challenges. Struggles in the school setting often center on their child’s inability to “fit in” with other students or an inability to grasp social expectations from their teachers and peers. Additionally, their child’s feelings of high anxiety and stress can make the learning environment challenging for them and the people around.

Depositphotos_44865227_s-2015

Over time, I’ve listened to concerns from parents and teachers regarding a student’s lack of understanding when it comes to social situations in the classroom environment. This often leads to isolation and the need for behavior support.

There is information in the literature that suggests both adult and peer mediated techniques to teach and build social skills in children with autism.

Strategies that are directed by an adult include reinforcement of shaped social skills. This is a technique where the child is reinforced when they demonstrate closer and closer approximations of a desired behavior. Peer mediated strategies incorporate the use of proximity, prompts with reinforcement, and teaching peer initiation. The literature also supports using social scripts to capitalize on visual learning methods (Krantz and McClannahan 1993).

In my experience, I’ve observed how visual supports can be very beneficial in producing non-transient messages for the student to follow and use during social situations. When paired with direct instruction using ABA techniques like shaping and reinforcement, social skills training can be accomplished.

When you set out to develop visual supports, first perform an internet search to get some ideas.

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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.

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First, let’s have sensory processing disorder explained by someone with a personal experience with it. Watch this video of Amythest Schaber, a person living with an autism spectrum disorder.

Differences in auditory processing are one of the more commonly reported sensory processing impairments. In one chart review of developmental patterns in 200 cases with autism 100% of the participants demonstrated difficulties with auditory responding.Continue Reading

With your summer all wrapped up, I hope you’re off to a strong fall. Speaking of fall – I couldn’t resist – are you or your family struggling? Struggling is part of being human – you’re not alone. Do you crave strategies to move past your challenges? 
Of course you do so let’s start with a quick definition.

What’s your #1 struggle right now?

Is it…
*Never getting it all done?
*Pesky thoughts nagging at you – are you doing enough?
*Living in fight or flight stress?
*Repeat offenders – facing the same problems over and over again?
*Wishing there was another way – but not being able to see it?

What if there’s a solution right there in the struggle? It’s completely possible and just waiting for you. I say, whatever your struggle, let’s discover the way out.

You may be thinking, that’s great for other people, but not me and my family. Raising kids is no joke. It’s hard work. It involves all the things. Raising a kid on the spectrum is all the things on steroids! I’ve come to know this full on truth from every “steroid living” parent and youth.

Since they were little, you’ve been inundated with every conceivable intervention, strategy, advice, philosophy, educational approach and on it goes. They’ve been your lifeline and your achilles heel. Since we know society is on information overload it only makes sense that you, “steroid parent,”have been taxed beyond measure. I’m not pedaling snake oil or quick fixes. I don’t pretend to know what your days really look like and feel like day – after – day.

What I’m offering is a slight shift. A click on your mental and heart dial. If you’re open to a shift in your perspective, it can hold the potential for a whole new way. It’s ironic this shifting perspective deal. You know how challenging it is for your beloved child on the spectrum to shift perspective. You know the huge strain that creates. You even know how to shift around their lack of shifting.

In some ways this ability has saved your sanity. In other ways it’s been unknowingly perpetuating your frustration. You’ve learned to anticipate the needs, reactions, and overall experience within seconds. With this, you’ve got to be exhausted. It’s draining to have to figure it all out – all the time. That creates pressure. And nobody has their full set of resources (their best thinking) available while living in constant pressure.

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Having Autism is tough as it is already because you may come across many people who do not understand or care about you. You may often be made fun of because of the way you look, walk or anything you do or say. It’s a continuous battle that I deal with every day and unfortunately there exists people who will talk and make fun of you no matter what. Know that you are not alone. I have 2 simple idea on how to enhance your emotional intelligence (or Emotional Quotient, EQ) to counteract this negative feedback and restore your mind with positive thoughts.

As has previously been discussed on Aspergers101, emotional intelligence is a crucial skill to learn and practice that can greatly benefit you in many areas of your life. But how exactly do we get there? The steps below should help guide you towards building your emotional intelligence and self-awareness.

How can we enhance our emotional intelligence (EQ)?

  • Listen to your body:

A gut feeling you have about a particular situation such as quitting your job is a sign that something is not right either about the situation, or something is not right about quitting your job. If your body gives you an alert signal about a certain situation, pay heed because it may save you from a dangerous outcome. Listening to these signals and the root feelings of the sensations in your body will process your power of reason.

  • Always ask yourself, how do you feel?:

From a score of 0-10, with 10 being the best and most positive and 0 being the lowest and least confident, write it down in a journal to record how you feel each day overall. If you’re having a bad day, examine how or what caused you to feel this. Explore what transpired that day that made you feel down and how it connects with your overall feelings.

  • Write down your feelings and thoughts:

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