Parenting an Aspie: A Cerebral Task

What if I were to tell you that parenting a child with Asperger’s Disorder is (as not-so-simple as) having an argument without emotion? Perspective and patience, neither of which are plentiful for Aspies or for participants in an argument, are the keys to success.

Let’s face it. An argument takes on a life of its own. It is a verbal joust without rules, order, or logic. At their worst, arguments can be about “winning”, putting others down, and getting revenge. At their best, negative emotion fuels negative emotion as the initial trigger for the argument is shoved aside by anger, frustration, and impatience.

What happens when you replace the word argument with debate? The emotionality of the interaction is completely drained and replaced with rules and structure. A podium allows for uninterrupted speech. A topic is provided beforehand, affording each side time to construct their thoughts into cogent arguments and counterarguments. Emotion is for emphasis but is not necessarily effective or desired.

Let’s take a mom and an Aspie. Our Aspie has failed to brush her teeth after four reminders because the latest installment of Pokemon is far more interesting. Our mom has a long day ahead of her and little sleep and just needs our Aspie to brush her teeth, so they can leave for school.

Brush your teeth.

BRUSH your teeth.

BRUSH YOUR teeth.

BRUSH YOUR TEETH.

When this shift occurs, from problem-solving, from logical, practical thinking, to emotionally laden speech, we lose our Aspie. We bombard her/him with tone of voice, facial expressions, postures, emotive language, and gestures that simply

Shut

An

Aspie

Down.

Brushing anything is farthest from our Aspie’s mind as she tries to make sense of the emotion. Her mind whizzes, she panics, and she has no idea what to do. As she tries to make sense of the emotion, her mom continues to expect that task to be completed. A full-on argument ensues, and our Aspie’s ability to problem-solve, to think rationally – a typical cognitive strength for Aspies – is replaced with a Flight or Flight reaction (depending on the day).

When the dust settles, and the teeth are brushed, our Aspie cannot be left to pick up the pieces, attempting to understand both the problem and the emotion. We need to have a conversation with her, asking her: How can we avoid this next time? How can I communicate better?

Parenting an Aspie is a cerebral task, a constant one at that. By no means am I saying you can parent a neurotypical child easily or mindlessly but they can make sense and learn from your emotions. Your Aspie cannot. You will parent an NT with your gut and an Aspie with your brain. Your Aspie needs you calm, logical, and with your emotions in check.

 

 

An Obit: Asperger’s Disorder (1994-2013)

An Obit: Asperger’s Disorder (1994-2013)

Asperger’s Disorder, a lovable, socially awkward and at times misunderstood part of the autism spectrum, died in May 2013 due to complications related to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Asperger’s endured a prolonged battle with ivory-tower hypocrisy and finally succumbed to the paranoid fears of misdiagnosis-motivated endemics and the resultant raging cost of medical expenses. Asperger’s Disorder, known by aliases Asperger Syndrome or Asperger’s, was 19.

Asperger’s Disorder was surrounded by his family, including his brother, Autistic Disorder. 

A beloved icon to some and a controversial figure to others, Asperger’s had deep roots in the most powerful, creative and brilliant minds of our society. With spots in many popular television shows, Asperger’s became the official poster-child for the autism spectrum family.

From 1994 to 2013, Asperger’s was alleged to be responsible for spearheading a dramatic increase in autism spectrum disorders. While naysayers argued that Asperger’s was PC for “freak” or a bail-out for the “weirdo quirky” ones, Aspies clung to their diagnosis with pride and conviction.

Asperger’s is survived by Autistic Disorder, Autism Spectrum Disorder, Sensory Integration Disorder, Childhood Disintegrative Disorder, and Temper Dysregulation Disorder. Asperger’s had recently celebrated graduation from high school and was pursuing courses at the local community college while living at home. Although he aspired to attend the local major university, he knew had many adaptive skills to gain, including juggling a part-time job and maintaining his personal hygiene.

Memorials will be held at upcoming Star Wars conventions, technology summits, E3, LegoLand, Comic Con, LARP gatherings at local colleges, and Magic, YuGiOh, and Pokemon gaming rooms in coffee shops.

 

Not So Fast: I’d Like to Keep Asperger’s

I have fallen off the face of the blogging Earth for the last I don’t even know how long. I’ve had messages about my health and vitality, as though my silence has suggested that I have disconnected from breathing or working with individuals with ASD. Far from the truth. From the past six months I have been too busy to write anything beyond immediate, work-related items. That’s a nice way of saying I’ve been tired, and, if you’ve read my blog with any regularity, you know that I like to write when passionate, which is usually not when tired.

Over the past three months, I have had a recurring question, theme, concern presented to me: The changes in the DSM-IV-TR that will remove the diagnosis of Asperger’s Disorder in favor of a broader term, yet more diagnostically restrictive diagnosis of autism spectrum disorder. I have written on this topic long, long, long ago. So, why do I return to this topic? Well, to be honest, because about 75% of my clients have Asperger’s Disorder. And, this question KEEPS PLAGUING ME: What does this mean for my child?

I hate my answer.

I don’t know.

Sure, I could hypothesize.

But, will IDEA catch up? I don’t know. I doubt it. It was “just” reauthorized in 2006. In cyberworld, that’s centuries ago. In the legal world, that’s yesterday. For parents with kids with ASD, it’s forever.

Will insurance companies finally do something? Sometime before I die, perhaps. Might be quicker than the reauthorization of IDEA. Maybe someone should take me out. Just trying to expedite things.

If the hope is to stem the tide of increasing diagnostic numbers, not sure it will work. If the hope is to further complicate and bifurcate the ASD community, its focus, treatment, understanding, clarity, awareness, acceptance…. oh, I’m sorry, I have a point…. then, MISSION ACCOMPLISHED.

Yes, the criteria need revamping. We just “borrowed” from Autistic Disorder to explain Asperger’s. Not the smartest idea, but the diagnoses did get rolling.

But, we fought for Asperger’s and now we are going to kill it after 18 years? I’ve had pants, pets, and pairs of scissors longer than that. And, why are we killing it? It’s imperfect, but Hans Asperger had identified something different than Autistic Disorder. Autism is NOT Asperger’s. Yes, they are on the same spectrum, but they are not the same.

If you want my opinion, and I know you don’t, we would replace PDD-NOS with autism spectrum disorder, keep and revamp Asperger’s Disorder, and refine Autistic Disorder.

The APA didn’t ask me. though. Or any of my parents or clients about the loss of Asperger’s. It’s like ripping a bandaid off scraping the surface with sandpaper.

 

How Do We Put the Spotlight on ASD?

How do you teach someone about something that they don’t know about? If you are considering moving on to a different post or different page because of the lack of clarity of that statement, be warned that it is purposefully vague. A few days ago, I asked people to provide me blog topics because I was in a bit of a creative funk. Following my earlier post about my exchange with the Internet guy, a parent asked me to blog about how in the world we explain autism to people who know nothing about it. I’ve been thinking about that topic for quite some time, trying to decide how to think about and how to approach such a topic.

Think about a bookstore. There are hundreds of sections and sub-sections. Photography. Test prep. History. Crosswords. Literature. Children’s literature. Black history. Civil war. Nature. Cooking. Dieting. Self-help. What section do you frequent? I recently began exploring to the photography section, as I have purchased a DSLR and am learning the craft slowly but surely. I noticed the section before, but I never picked up a book, flipped through its pages, or considered learning. Was I interested? Maybe from a pure state of curiosity. Did I need to look in that section? Nope. Didn’t own a camera. What’s more, it’s a complicated endeavor. As a matter of fact, everything is a complicated endeavor with pages and pages of information read on topics both large and small. ASD is no different — a huge topic, with millions of voices, and a lot to learn. So, what tips the scales in the direction of wanting to know more?

Quite frankly I believe it is need. A teacher has a student with AS placed in her classroom. A camp counselor has a camper with autism in his camp group. A parent has a child diagnosed with ASD. Suddenly, this unknown entity becomes pertinent enough to warrant, even necessitate exploration and fact-gathering. Recently, I was asked to serve as an expert witness for a case in which an adult with AS was hit by a train. The lawyer said it best: “I’d heard of it but never thought much about it until now.” So, how do we make ASD not just visible with a puzzle piece but visible with a significant impact that warrants explanation?

 

James Durbin on American Idol: The Tale of Fitting a Square Peg in a Round Hole

Courtesy of: newgre.org

Know what  you get when you try to fit a square peg in a round hole? James Durbin. Or any person with Asperger’s really. I could lecture, ahem, inform you on all of the ways Aspies just don’t quite squeeze into that hole, no matter how we position and rotate and twist and turn. Mind you, that assumes our hole represents neurotypicality (and, not to mention, that the pegs want to be shoved into the holes, which they don’t). But, poor James, he doesn’t even get that. He gets people, this blogger included (Fact or Fiction: James Durbin and AS?), questioning his square peg status. He has people telling him, “No, James, you are not a square peg trying to fit into a round hole. You are a round peg trying to fit into a square hole.”

All of this because he disclosed. He pronounced a rather unfortunate word with an attempt at a sophisticated interpretation — one that’s not all that uncommon, mind you. And, then, he acted too “normal”, other than that squinting. Too much eye contact, and coordination, and appropriate facial expressions.

All of this because he preempted possible comments about his mannerisms by giving us an explanation that should have lead us to say, “Ohhhhh, now I get it” or “Good for you, James” or “What a positive example for us to point to”. But, we have to find some way to judge, right? After all, isn’t that the point of the show he is on? If James hadn’t told us, we’d wonder why he was “weird” or “squinty”. If James tells us, we doubt his authenticity, his purpose. Joseph Heller might be tempted to rename his book, James.

This Catch-22 was echoed in my office today with two male clients who have very different views on disclosure. One sees no shame. In his words, “I look normal until I talk or write. Like when I write a check and it takes forever, and others start to wonder, ‘What’s up with this guy?’” The other struggles to admit the diagnosis even to long-time friends. “It will change their view of me. I can’t control that.” James is at the crosshairs of both problems. He’s looked normal, until he hasn’t. He’s disclosed and lost control.

So what’s a square-ish round peg to do in a static world? To start, I suppose, win American Idol.

 

Boys in Social Skills Group: “My Autism is Forever” versus “My Autism Used to Be”

Whenever a new member joins a group, we do what the kids call the NOOB game. In this game, they are given a set amount of time to figure out a fixed number (usually their age) of things they have in common. These commonalties cannot be what I call “no duhs” — they have hair, they are boys, they have feet, etc. Today, the boys eagerly requested the NUBE game with the addition of Vic.

The game usually begins with pizza, video games, ice cream, and Star Wars. Until today. “Do we all have diagnoses of Asperger’s, autism, or AD/HD or something like that?” asked Trevor. “Asperger’s”. “Bi-polar Disorder.” “Not me. I used to have autism, but not any more.” Trevor said, “Wait, dude, if you have autism, you have it forever.”

I can honestly say that this topic has never come up in group, which, now that I think about it, is somewhat surprising. Most days, no stone goes unturned. I was caught off-guard today and I know that I didn’t do the topic justice. In fact, we didn’t “do” the topic at all. Both boys were adamant that they were correct — Trevor that autism is forever, and John that he “used to”. They didn’t argue, rather they just shutdown. So, we moved on.

The question that remains for me: How do I reconcile this contradiction for Trevor and John and the others?

 

A Kid with Asperger’s Pays It Forward and I Smear My Mascara

I could not sleep last Thursday, February 17, 2011. I was awake until 4AM Friday morning, fretting, thinking, rethinking, analyzing, and regretting. I tried all of those cliched home remedies — warm milk (I’m not a fan of milk, so that was my level of desperation), melatonin (6mgs when I usually take 1mg), reading in low light, boring television, counting sheep, a deep breathing routine. Nothing. I hadn’t been that anxious about something in years.

Earlier that morning, I visited Christopher’s house. Well, I thought I was visiting Kim, Christopher’s mom. We were going to talk about Camp Confidence, a camp I started last year for kids with AS. When I arrived, I asked my customary question: “Do you want me to take off my shoes?” Kim laughed and said not to worry. Then, I looked up to see Christopher and his brother. “Why are you guys home?” I asked. Kim said, “It’s a special day off from school.” I joked, “If you guys keeping have special days off, you will be going to school well into June.” (We’ve had a lot of snow in Kansas City, which is akin to saying the North Pole has a lot of 80 degree days.) I was ushered into the dining room and, then, bam! camera in my face. You see (or you will see in the clip, please click here) that the special day off from school was for me.

All day and all night, I reviewed every answer to every question I was asked in my head.  In hindsight, I cringed at some of my responses. I downright groaned at others. I hoped and prayed for editing because I wanted Christopher and all of the clients I serve to be seen in the best light.  I realized  that light for me is not best when attached to the end of a television camera and shoved directly next to my face. But, I had this opportunity to speak for them, and, well, I laid in bed knowing I could have done better.

To watch that video, though, was perfect. I’m not the star, and I have never wanted to be. The light, you see, shines brightly for and on Christopher. He is a star, the star. I didn’t need to worry about what I said because he said it better. Better than I could ever have imagined.

I am simply proud, honored, and blessed to know him, his brother, and his family. Thank you, Christopher.

 

First Impressions and ASD: Maybe We Should Get a Second Chance?

We all know the phrase, “You never get a second chance to make a first impression.” Each and every time a new member joins one of my social skills groups, we talk about first impressions and how behavior in both action and word impact how others think and feel about us. We talk about how first impressions are made automatically and immediately.

Unfortunately, I think these discussions have been a lot of hot air on my part.

A first impression is the outcome of:

• Reading facial expressions and body posture
• How someone talks – word selection, tone, fluency – as much as what this person actually says
• Assessing how this person is behaving around you and deciding if you want to be around someone who behaves in this manner
• Thinking about how this person would reflect upon you
• Looking at clothes, hairstyle, and other points of grooming to see if you believe they are up to your standard
• A reciprocal verbal and emotional exchange of thoughts and feelings

As I read this list, which is far from complete, I realize how many of these skills are so challenging for individuals with ASD. It leads to posit that perhaps individuals who are on the spectrum do not develop first impressions in the same way as neurotypicals. This is not to say that Aspies and auties fail to make first impressions, rather to suggest that other variables are at play.

For example, on Tuesday Darren joined a group of three boys his age. Mike’s behavior was in stark contrast with Darren’s as well as the two other boys in the room. Mike was nervous, excited, and happy to have a new member. He was tired from his school day and from a session with me individually to address some other issues he was having. Mike is more impulsive and less attentive than the other boys. When Darren asked the guys for help with a friend at school who is spreading rumors, Mike said, “I’d murder him in an online game.” Mike repeatedly used mild curse words, despite admonishing from George, who reminded Mike that Darren might not appreciate this language.

By most standards, Mike’s first impression on Darren was less than stellar, an idea I pointed out to Mike several times in a variety of ways. But, ultimately, the “impression” of the first impression was not my call. Darren’s opinion is what mattered, and Darren said, “He’s like my friend Sam at school.”

The complicating factor is that neurotypicals would not have made such a judgment. Neurotypical thinking and emoting is what has made the idea of a first impression so challenging, scrutinizing, and anxiety-producing. Aspies and auties seems to have a dual challenge:

1. The pressure to try to create a good first impression without some of the social skills to do so and the social-cognitive skills to actively process their behaviors in vivo
2. A different way of processing, assessing, and adjudicating others that can result in categorically different impressions of others

It seems that Aspies and auties have a second chance with each other, but not with NTs. Maybe we NTs could learn a few things.

 

Fact or Fiction: James Durbin and Asperger’s?

Tonight, Jesse, a nineteen-year-old client with AS, asked me to watch James Durbin. By now, I’m sure you have heard of him. The twenty-one-year-old unemployed singer on American Idol who has a small child and a supportive girlfriend. I hadn’t heard of James Durbin, nor had the four other guys in the group, all with AS. So, we viewed this clip:

Watching the clip was easy. James Durbin is an excellent singer, more likable and less polarizing than Adam Lambert. He has a story that AI loves — no job, big dreams, complications. For James, these complications are even diagnostic: Tourette’s and Asperger’s. But, watching was only the first part of what Jesse wanted.

“I don’t think he has AS, Jeanne. I think he is working that situation for the show. What do you think?” That’s where the hard part came in. So, I asked the guys to make a case for why he might not have AS; here were their arguments:

“Um, I don’t know many Aspies who frequent bars. Especially at that age. I mean, he’s barely legal.” (James might be breaking a rule, an Aspie no-no.)

“I have Tourette’s. The stress of singing would make me start ticking.”

“Yeah, well, I have Asperger’s. The thought of being around that many people would make me more than nervous.”

“I thought Aspie’s don’t make good eye contact. He just looked his son in the face.”

“That much crap in my hair would make me freak out.”

“His clothes look itchy.”

“I didn’t look at the camera when I was in pictures.”

“I don’t call it AUS-pergers.”

Then, I asked the guys why he would “lie”?

“I don’t lie.”

“I don’t know.”

“To get on tv.”

“To get on tv.”

“To take advantage of the situation.”

I ask you, my reader: What do you think?

 

Good-Bye Asperger’s, Hello TDD?

To say I am dumbfounded is a bit of an understatement. I’ve been reviewing the proposed changes to the upcoming DSM-V with regard to ASD. It is well-documented that the manual is likely to remove Asperger’s Disorder (299.80). Opinions are mixed on this omission. Some argue that the spectrum is the spectrum; that Asperger’s is like autism and that a diagnostic label doesn’t matter. Others argue, myself included, that leaving out AS is a mistake. Today, I stumbled across the DSM-V’s latest brilliant idea:

Temper Dysregulation Disorder with Dysphoria

A. The disorder is characterized by severe recurrent temper outbursts in response to common stressors.

1.  The temper outbursts are manifest verbally and/or behaviorally, such as in the form of verbal rages, or physical aggression towards people or property.

2.  The reaction is grossly out of proportion in intensity or duration to the situation or provocation.

3.  The responses are inconsistent with developmental level.

B. Frequency: The temper outbursts occur, on average, three or more times per week.

C. Mood between temper outbursts:

1.  Nearly every day, the mood between temper outbursts is persistently negative (irritable, angry, and/or sad).

2.  The negative mood is observable by others (e.g., parents, teachers, peers).

D. Duration: Criteria A-C have been present for at least 12 months.  Throughout that time, the person has never been without the symptoms of Criteria A-C for more than 3 months at a time.

E. The temper outbursts and/or negative mood are present in at least two settings (at home, at school, or with peers) and must be severe in at least in one setting.

F.  Chronological age is at least 6 years (or equivalent developmental level).

G. The onset is before age 10 years.

H. In the past year, there has never been a distinct period lasting more than one day during which abnormally elevated or expansive mood was present most of the day for most days, and the abnormally elevated or expansive mood was accompanied by the onset, or worsening, of three of the “B” criteria of mania (i.e., grandiosity or inflated self esteem, decreased need for sleep, pressured speech, flight of ideas, distractibility, increase in goal directed activity, or excessive involvement in activities with a high potential for painful consequences; see pp. XX).  Abnormally elevated mood should be differentiated from developmentally appropriate mood elevation, such as occurs in the context of a highly positive event or its anticipation.

I.  The behaviors do not occur exclusively during the course of a Psychotic or Mood Disorder (e.g., Major Depressive Disorder, Dysthymic Disorder, Bipolar Disorder) and are not better accounted for by another mental disorder (e.g., Pervasive Developmental Disorder, post-traumatic stress disorder, separation anxiety disorder). (Note: This diagnosis can co-exist with Oppositional Defiant Disorder, ADHD, Conduct Disorder, and Substance Use Disorders.) The symptoms are not due to the direct physiological effects of a drug of abuse, or to a general medical or neurological condition.

Am I the only one who is worried about this? This is not to say that TDD is replacing AS. In fact, it appears that the presence of a PDD (AS, PDD-NOS, autism) is a possible rule-out (explanation) for TDD. My concern about this diagnosis relates to rationale. The DSM creators supposedly are removing AS because the diagnosis overgeneralizes. Well, if TDD isn’t overgeneralizing, what is it?