Month: September 2012

Guilt, Disney World, The Butterfly Effect, Yoda and Autism

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There’s a lot of guilt out there in the Spectrum.  A lot of guilt.  Reading through a lot of blog posts I cannot help but notice many with the themes that shout: “Did I Read Enough?” or “How Did I Miss The Signs Of Autism?”, “Did I Cause This?” or the near-universal “What If I Had Only…” 

I am not here to bash parents; if you have read my other posts, this blog is intended to highlight some of the many inspiring stories of families affected by Autism, or highlight people on the Spectrum who are interesting and are worthy of notice.  For many parents blogs are an outlet for many them to reflect, vent and share their emotions and experiences. 

Maybe I just don’t get the sometimes self-loathing feel after reading some of these posts.  Or I myself have not been able to be that open about my emotions (literally speaking, that is).  After reading some of these posts, I often catch myself saying, “Aaand….now what?”

It’s kind of like those Disney World commercials that come at the end of every Super Bowl:

“Hey, Ed: your child has just been diagnosed with Autism!  Now what are going to do?”

“I’m going to write a blog and expose every raw nerve I have to complete strangers! And then I’m going to second-guess every moment since my child was conceived!” 

No.  No I’m not. 

We can lament and ruminate over all the ‘what if’s’ but that is self-serving at best, in my opinion.  If we could miraculously go back in time and change one thing that may have triggered Autism to enter our lives, would we do it?  What would changing that one thing do to every single event that followed it?  Not to put too fine of a scientific/philisophical point on it, but I personally believe in the Butterfly Effect; a minute pebble thrown into the proverbial lake of life causes a ripple to cascade outward.  A different pebble thrown in the exact same spot and at the exact same time as the first pebble creates a ripple of different dimensions.

My point here really is: Carpe Diem.  Live in the now.  Live for today.  Don’t let yesterday take up too much of today.  Tomorrow is not guaranteed to any of us, except as a dream we hope to live in, one day.  Today, just as we plan and hope for progress for our children’s futures, he/she would not be where they are, or who they are, unless we had done whatever it is we did exactly when we did it.  Dwelling on the possibilities of the past is only useful, I think, if we plan on living the unfulfilled life. 

Our children are exactly where they are meant to be.  And so are we.  Our children have grown because we started Early Intervention when we did, or started/stopped a medication when we did, or fought for things in their IEPs when we did.  Our lives don’t line up from A to Z; there is no linear pattern to how we proceed through it.  The real cause and effect is that we did something at all, not if we did enough.  The real cause and effect is how we act now for the benefit of our children, not how we judge those actions years from now.  Our child may grow by leaps and bounds by what we do with them today.  Can we/they do more? Always. 

Thank you for indulging me in voicing this observation and existentialist opinion.  And a sincere thank you to parent bloggers everywhere who provoke thought and invite others to get a glimpse into their world. 


Do You Smell That?

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“If you smell what the Rock is cookin’?” chances are your senses are intact; you can properly decipher that the above video has nothing at all to do with smelling or cooking.  However, a new study suggests that many adults with Autism may have very inconsistent responses to sensory stimuli.  This may not be earth-shattering news but looking forward, it may eventually be adapted to become a low-tech way for parents to detect, or suspect that their child may have Autism.  -Ed


People with autism perceive sight, sound and touch in extremely unpredictable ways, new research suggests, a finding that may help explain behaviors associated with the developmental disorder.

In observing adults with and without autism as they experienced various sensory stimuli, researchers found that those with the disorder responded inconsistently even when they saw, heard or touched the exact same thing over and over again.

“This suggests that there is something very fundamental that is altered in the cortical responses in individuals with autism,” said Marlene Behrmann, professor of psychology at Carnegie Mellon University who worked on the study published this month in the journal Neuron. “It also begins to build a bridge between the kind of genetic changes that might have given rise to autism in the first place – and the kind of changes in the brain that are responsible for autistic behavioral patterns.”

For the study, researchers used functional magnetic resonance imaging, or fMRI, to observe brain activity in 14 adults with and 14 without autism as they experienced various sensory stimuli. To measure sight, participants watched a pattern of moving dots while their auditory responses were tested by listening to pure tones and short air puffs were used to assess reactions to touch.

While the typically developing adults in the study had fairly consistent reactions, those with autism displayed responses varying from strong to weak even when faced with the same stimuli repeatedly, researchers said. This unreliable view of the world may offer clues as to why people with autism exhibit certain behaviors, they said.

Yes it is…

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Friend Nominates Asperger Teen To Be Homecoming King

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Student With Autism Nominated For Homecoming

At first, his mother thought it must be a joke, another cruel trick being played on her son Chris by his classmates at school.

After all, Marisa Bartz had heard for years about her son being teased because he has Asperger’s syndrome — a form of autism.

Last week, Chris sent his mother a text message saying he’d been nominated for homecoming court.

“Being a mom, my initial reaction was wanting to protect him, but I also wanted him to be happy,” Marisa Bartz said.

Chris was diagnosed with Asperger’s syndrome at age 8.

According to the UC Davis MIND Institute, children with Asperger’s often have difficulty with social interaction and communication.

They may seem physically clumsy and obsessed with particular subjects, such as video games, computers or maps.

In Chris’ case, he was fascinated by trains, and later, by miniature soldiers. He was terrified by crowds and strangers.

“One of the things I did to calm me down is, I walk around and kind of make noises. I kind of think to myself that I’m in a different place,” said Chris, while seated in his bedroom at a table covered with tiny, painted British soldiers.

Marisa Bartz said she was relieved when she learned that the nomination had come from Chris’ friend and next-door neighbor Jacob Rossbo.

“I just back him up,” said Rossbo, who is also a senior at Antelope High. “I don’t like people who tease and talk crap behind people’s back. That just bugs me.”

Chris is one of about 20 students who have been nominated for homecoming court.

Voting begins Friday and continues through next Tuesday.

The winners will be announced at a rally prior to the varsity football game on Oct. 5.

To remain eligible for voting, nominees have to keep good grades, dress up in goofy clothing for school spirit days and jump and shout at pep rallies.

Marisa Bartz said the good grades are not an issue for Chris, but attracting attention to himself in public will be a challenge.

“Standing in front of stage of people kind of makes me a little nervous,” Chris said.

However, Bartz said her son has made great progress from the days when he would run wildly out of school assemblies.

She credits Chris’ friends and a nurturing environment at school and on sports teams.

And what if he doesn’t win? 

Chris said he’s thought about that.

“It’s a great honor just to be nominated,” he said.

A Prima Ballerina Of The Autism Spectrum

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Clara Bergs is a ten-year-old with a passion for dance, yet she faces far more challenges than the average budding ballerina. Bergs was diagnosed with autism and DiGeorge syndrome at birth, meaning she faces great physical and learning challenges, has difficulty connecting to others, and often dwells in a world all her own.

Clara’s parents noticed her repeating a certain dance around the house and after a while realized she had completely memorized Swanhilde’s masquerade in “Coppélia,” clearly no simple task. The video of Clara’s heartbreakingly beautiful dance has gone viral on YouTube, receiving a number of grateful comments such as, “She makes the world a happier place.” We too are blown away by this tiny dancer’s strength, grace and adorable smile. Watch Clara’s “Coppélia” and tell us it is not one of the most touching renditions of the classic dance you’ve ever seen.

It’s Still Only September

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As many of you know, Mike started in a self-contained class this year at Island Trees Memorial Middle School.  To say that we were thrilled (including Mike) is a gross understatement, but with that enthusiasm brought a lot of anxieties to the surface, some of which I posted in earlier blog entries.  Mike loves to draw and sees himself as quite an artist, and has had his artwork featured in his former school’s notecards, etc.; he often tries to draw perfect copies of pictures from his books, and often obsesses over not getting it ‘quite right’.  I don’t think he expected two of his new classmates to also have artistic talents, and he sees this as diminishing his own talents somehow; akin to being in a three-way tie, there can be no clear-cut ‘best artist’, which frustrates him to no end.  He hates to lose, even if he actually doesn’t; in the past has displayed such poor self-image for coming in second, or getting a silver medal.  Yesterday he came home from school and had a mini-meltdown of sorts as described by my wife; accompanied by a far-reaching story that involved two classmates, punctuated with terms like “I poked him”, “he told me to stop touching him”, “she helped me up off the ground” and promises that “I followed the rules”.  Surely, we were certain ‘something’ had happened in school, but no mention was made in his Communication Book.  After a first day back after a 4-day weekend, a semi-difficult day in school, and the realization that his after-school teacher (who he would rather not deal with) would be arriving soon, I would probably have a little melt-down too. 

Why am I bringing all this up? To remind parents on the Spectrum not to get lulled into a sense of contentment after a brief period of progress.  Take a breath, by all means, to get a ‘lay of the land’.  Then get back at it: contact teachers to make sure services are being provided, discuss even minor behaviors that may be occurring, try to understand this year’s new dynamic your child is in, maintain structure and continue to communicate.  These are the ways your child made progress in the past and they will be key to future success as well.  Sometimes we need to remember that preparing our children for lasting success is the mother of all marathons; not the 100 yard dash it always feels like it is.  It’s still only September.  -Ed

School Planning For Autism Spectrum Disorders in 500 Words Or Less

A child with an autistic spectrum disorder does not intuitively understand the social world. Severely affected kids may have little apparent interest in people around them. Someone with mild impairment may be quite motivated socially, but lacks the skills to initiate or maintain social exchange or play. Regardless of whether the diagnosis is autism, Asperger’s syndrome or pervasive developmental disorder (PDD)-nos, this difference in social development defines the disability.

Educational planning for children with autistic spectrum disorders is often complex and difficult to negotiate. When children have severe impairments, they often end up in specialized classrooms — and sometimes are mainstreamed too quickly. For children more able to integrate into mainstream settings, an appropriate balance between class time and services to address their special needs can be hard to define. They benefit from, and hopefully enjoy, time with mainstream peers and teachers, but they still are behind developmentally and require services.

The bottom line in educational planning, however, is this: As long as a child continues to show symptoms of an autistic spectrum disorder of any kind, he or she requires continued and targeted special services. Even children with mild social impairments, who are able to get by in mainstream classes and frequently do not act out in any way, require services. To meet a child’s long-term potential, we must define and develop a long-term plan that addresses the often subtle social and communication skills that lag behind peers.

As the school year beings, here’s an overview of educational planning (in 500 words or less):

1. Behavioral therapy is the core intervention.

For intense impairments, a self-contained classroom with an autism-specific behavioral program is the quickest way to catch a child up. With milder impairment, children still benefit from direct instruction. As long as symptoms of autism persist, children require ongoing behavioral intervention, considering both individual and group interventions, to teach core social skills. Exposure to typically developing children alone doesn’t accomplish enough. If they could instinctively learn from peers, they probably wouldn’t have autism.

2. Speech language delay is part of the autism diagnosis.

Regardless of how high-functioning children with autism appear, they have language deficits. It’s a defined part of the diagnosis. Some have profound delays in expressive skills and comprehension, but for others the delay is more subtle.

Pragmatic language refers to all the unspoken, nonverbal aspects of human communication. Pragmatic language delays are inherently part of having autism, so children require ongoing speech-language therapy. Importantly, pragmatics are impossible to quantify, so we cannot rely on test scores to define needed services. As long as social awkwardness, lack of awareness, or communication concerns persist, skillful language intervention has a role.

3. Daily repetition is needed to learn social skills.

If the absolute most important thing in the world was for your child to become a concert pianist by age 16, she would have to practice multiple hours almost every day to get there.

Similarly, for children with autistic spectrum disorders the development of social and communication skills is the absolute most important thing in the world. Their educational plan, considering what happens both in and out of school, should include daily reinforcement through a variety of services. As children catch up, or for those with very mild impairment, the intensity can be decreased.

4. Monitor the need for related services.

Occupational therapy addresses fine motor, handwriting and sensory concerns when present, all of which are common with autism. Physical therapy addresses primarily gross motor concerns. Psychoeducational testing should look for these types of impairments, with an emphasis on daily living and adaptive life skills.

5. Monitor for other academic difficulties.

Children with autism frequently have symptoms of attention deficit/hyperactivity disorder (ADHD). They also can have learning disabilities. Obsessive, rigid thinking may affect classroom performance. On a more subtle level, pragmatic difficulties impact their ability to understand and interpret reading assignments, social studies, and other work. This means they likely will need ongoing intervention to address a broad range of educational difficulties.

6. Many children with autism need more support during unstructured time than structured time.

The social rules in a classroom are simple: Sit down. Be quiet. Raise your hand when you want to speak. On the playground, in the lunchroom, and during recess social rules are constantly in flux. A recent study suggested half of children with autism become victims of bullies, which is much more likely during unmonitored time. Planning should address this unstructured, often unsupervised time of the day.