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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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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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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Although our emphasis is often focused on early intervention, it is important to consider various types of interventions that can grow with the child with Aspergers or HFA as they grow into adolescence, another area of huge potential growth. One approach that has demonstrated clinical impact is DIR/Floortime. This method is a relationship-based, developmental framework that is geared toward supporting foundational social-emotional capacities.

The DIR Model, or Floortime, aims to support higher level thinking abilities of multicausal and reflective thinking by building foundational stability in self-regulation and co-regulation with another. DIR/Floortime incorporates techniques and strategies geared toward promotion of more stable and more flexible emotional regulation in the child or adolescent.

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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
beliefs, aspie

I have three questions for you…

1. How many times a day, a week do you find yourself with a big old stressful decision?

2. How many of those decisions are simple and completely straight forward?

3. How many times does it feel like you’re saddled with two crappy choices?

beliefs, aspie

The human brain is fascinating and capable of many feats! It’s also prone to getting stuck. When making decisions, one of those sticking points is the Either Or Trap. You know what I mean, EITHER you do this OR that. Here’s why this is oh so common: your brain gets fixated on your habits of perception – the way you see life, people, situations, and then shuts down to any other options. It’s as if there really are only these two options. This is problematic because you literally can’t see other possibilities so you most likely aren’t going to seek out more solutions and people with opposing perceptions. You then make EITHER this decision OR that decision. 

This can feel oddly good at times, like any habit can, yet you also know the sweet freedom that comes from breaking a bad habit.

How can you avoid the Either Or Trap?

  • Acknowledge the tendency for the TRAP
  • Ask what if these didn’t work…what else…
  • Seek out people who think differently than you 
  • Set a timer – mind dump as many possibilities as you can saying AND
  • Ask what you really want to see –  as in wouldn’t it be GREAT IF…

You can absolutely expand your perception. This expansion cultivates more options that are actually connected to your purpose. You then have the freedom to experiment.

Let’s look at an example to see it in action…

Your child doesn’t like trying new things – change can be tricky for them because it’s such an unknown. Unknown has been code for it’s scary and must be avoided. Yet, you know it would be helpful for them to expand their repertoire. And necessary.

They don’t wanna so they yell, argue, heavily complain, and shut down.

You EITHER:

Start to think it’s not worth all this extreme hassle and pressure so you let it go…

With that, may come it’s all on them – go do what they want to do – fine, whatever.

OR:

You think they have to learn sometime so come hell or high water now is the time!

With that, may come it’s all on them – sink or swim, baby.

It often comes down to extremes.

The Either Or Trap is all about two extremes.

What if there were other options? I assure you there are…

It’s just that in the heat of the moment with your pattern of survival it’s hard to see – literally your brain has defaulted where you can’t see beyond the two extremes.

Let’s look at expanding perception…

  • Define what’s blocking the new experience attempt – what is IT (anxiety, disinterest)
  • Address the specifics – get to the root of fear with AND what else – not the symptom
  • Develop parameters – what will the attempt look like, how long, and debrief plan

Let’s look at potential options…

  • Bust out your calendar together – what are the daily, weekly tasks and activities?
  • How much calendar time builds the skills and attitude you actually want?
  • What do you actually want for them? for you? for siblings? for whole family?
  • Brainstorm topics and situations they know nothing or very little about.
  • Choose a topic or situation to experience for a set period of time – experiment.

Clarity of focus about what you actually desire breeds connection with what you actually want to do. All the doing and trying without connection keeps a cycle of doing and trying. This breeds fatigue, frustration, and eventually forget-it-ness.

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studentPerhaps most relevant to a student in the classroom: when you are stressed you are less likely to embrace difficult tasks. On your most stressful day, you will probably put the complex tax form in the “to do” box and leave it for a better day.

For our students, neurological stress can be the major underlying factor contributing to difficulties in communication, socialization, and academic performance.

Because of this, it is our essential job as parents and educators to respect the neurological differences and decrease that stress in creative and varied ways.

From breathing techniques to visual strategies and beyond, we will strive to decrease neurological stress so that our students and children can present their best self each and every day.

A schedule is a core strategy that creates an anchor for students who struggle to make sense of their day and their environment.

This is true of any classroom for any type of student. It has been well documented that learners benefit from having a daily agenda. Except, the difference is that while all students benefit from a daily agenda or schedule, students with Asperger’s Syndrome and other special needs have a greater need for this simple, yet fundamental strategy.

For a younger student, this might be a simple posting of the daily activities on the board. For an older student that transitions from classroom to classroom, the daily schedule might be best in a notebook. However, each class period or subject should post the specific activities for that day.

For example, a high school teacher can help to decrease the many stressors of high school life by posting something as simple as:

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meltdown

Although we have addressed the topic of meltdowns previously, it is a topic that needs to be revisited often, given the intense nature of the meltdown. “People with autism, new research suggests, may have an unusually large and overactive amygdala. This may be one reason why people with autism are easily overstimulated and have a hard time understanding and managing emotions.” – University of Washington

meltdown

This is one of many neurological findings that helps to explain how meltdowns are very different from tantrums. They originate from a neurological place of sensory differences: an over-abundance of neuronal pathways. The brain, whether through too much sensory input, cascading thoughts, chemical overload or some cumulative effect of all of these, gets overwhelmed!

I know individuals with autism can help understand the horror of the meltdown better than any observer. So I would like to refer to Carly Fleischmann for her unique perspective. The following is an excerpt from her website:Continue Reading

The fact that special interests can serve as calming mechanisms is largely true for neuro-typical persons as well. Think of your favorite interests outside of your job and your family.

What do you enjoy doing when left to your own devices? Some common interests include the following:

  • Reading
  • Gardening
  • Sports
  • Movies
  • Music
  • Photography
  • Exercising
  • Shopping
  • Traveling
  • Collecting Items

Whatever your interest[s] might be, you probably find them enjoyable, fulfilling, and even relaxing.  The interesting thing about interests is that one person’s most favorite activity/thing might be another person’s least favorite thing to do.

Shopping might be a relaxing and enjoyable activity for someone as they comb through racks and racks until they find that crazy deal of all deals! That very same experience might cause stress and even heart palpitations for another as they search for the nearest exit. As with most strategies, interests are highly individualized.

For persons with Aspergers, interests may take many forms and be especially intense.

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Welcome to the holiday season! The season is one of change, for a variety of reasons. The arrival of the holidays announces the coming of cooler weather for most of the U.S., begins a time of travel, and signals the end of the calendar year. The holidays are a time of change for college students, too. Most students who have been living full-time on campus since summer will be traveling back and forth between home and their dorms multiple times within a few short weeks.

Support For OffCampus TravelOff-campus travel can be complicated. Travel by rail can be rife with delays. Bus travel can be time consuming. And those traveling by air frequently encounter challenges due to cancelled flights and the navigation of multiple airports.

The Benchmarks of Effective Supports for College Students with Autism Spectrum Disorders (2012) is an assessment tool with which to determine the readiness of specific institutions of higher learning to support the academic, social, and independent living needs of students living within the autism spectrum.

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Artist, Writer, Director and college student Dwayne Dixon possess the talents of many diagnosed with Aspergers. Though Dwayne does not have Aspergers, he is a strong example of utilizing what talents/intense interests you do have into a passionate living! He and his production team from New York are always on the scout for voice talent (see contact info at end of blog) and recently enlisted Sam (my son with Asperger Syndrome) for a part in a working program titled: Kuro ni Fedo. We caught up with Dwayne during his hectic schedule to ask some questions about VSW Productions, his aspirations and his advice for those on the spectrum.

Brief Background: VSW (Vendetta Spying Wolf) Productions is a non-profit production crew made up of college students who have an interest in voice acting, animation, etc. The latest project is a series titled Kuro ni Fedo. We caught up with VSW owner Dwayne Dixon to learn more of the behind- the- scenes makings in his fan fiction animation.

Aspergers101:  Hello Dwayne and welcome to the Aspergers101 Community! Tell us about your talents and how you pooled them with some of your New York college friends to form VSW Productions.

Dwayne Dixon: Hello to you too and thank you for having me. To begin answering that I must first rewind the clock a little. When I was younger I would always draw characters from certain cartoons that I enjoyed. I’ve been given compliments in response to my art. It made me feel good so I kept practicing. Honing my skills I’ve meet up with my co-writer/best friend from High School and due to having common interest we decided to write the story to Kuro ni Fedo; which stands for Fade to Black in Japanese.

Aspergers101: What kind of projects are VSW Productions currently working on?

Dwayne Dixon: Still early to the whole Production aspect we don’t have a lot of projects out yet but we’re mostly working on Kuro ni Fedo since the illustrations and the voice work takes the longest of our time. But I also have another project in mind that could possibly be a live action short film that will even involve those that aren’t close by. Such as those who voice outside of the state of New York. VSW Productions doesn’t try to leave anyone out.

Aspergers101: Who writes the copy, produces the music, illustrates and edits for Kuro ni Fedo?

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