A New Fear Factor

Our son has a new phobia.  Last Friday, during a screening of the PBS show “Arthur” in his classroom, he rose from his chair and said to his teacher, “I have to leave now.”  He stood in the doorway and would not return to his seat.  So the teacher’s aide took him for a walk until the show ended.    

Later, my husband and I asked our son why he didn’t want to stay in his chair.  He said, “I don’t like Arthur.”  We discussed other possible triggers including sensory issues or problems with classmates.  I was certain that our son had watched this show at home without a similar reaction.  Finally, we concluded he doesn’t like Arthur at school.   

Anxiety is common in children with autism spectrum disorder.  Between 11 percent and 84 percent of children with ASD experience some degree of impairing anxiety, according to a 2009 review study by researchers at Virginia Polytechnic Institute and State University.    

What’s more, some children with ASD may experience situational phobias.  For instance, our son widens his eyes and grips my hand harder than a WWF wrestler when riding in elevators or sitting in some darkened movie theaters.

In a 2005 study by researchers at Bucknell University in Pennsylvania, children with ASD reported having more situational phobias and medical fears than other children including typically-developing children and those with Down syndrome.  But the researchers also found that children with ASD had less fears of harm/injury compared with the other groups of children.

In addition, children with autism may have phobias of more than one situation or object.  In a 2006 study by researchers at the University of Louisville in Kentucky, 44 percent of children with ASD met the diagnostic criteria for specific phobia.  And over 10 percent of the children with ASD had a phobia of loud noises.

One possible option for dealing with specific phobias may be modeling appropriate behavior.  Modeling therapies (e.g. video, participant or self-modeling) have been used to treat other disorders including obsessive-compulsive disorder and social phobia.  However, this type of therapy may not be suitable for some children with ASD.  Other treatments include cognitive behavioral therapy and increasing approach responses to the fear-evoking stimuli.

Certainly, anything is better than crouching in the doorway.  So far, our son’s displeasure with this television show hasn’t extended to home activities or other objects.  But, gradually, we hope that he conquers his fears and not retreats from them.

A Tale of Ignorance

I was reading psychologist Dr. Frederika Theus’ 2008 report, “Asperger Syndrome in the African American Community:  Barriers to Diagnosis.”   The report focuses on obstacles to help-seeking behaviors (i.e. seeking consultation with doctors) that may affect accurate diagnosis and treatment of AS for African Americans.  

Socioeconomic factors such as lack of health insurance and limited income may delay diagnosis and make access to medical or support services challenging for many black households.  

Also, other issues including mistrust towards the medical establishment (e.g. Tuskegee experiment) and fears about bias regarding special education placement may negatively influence African American families.  For instance, blacks accounted for 27 percent of students identified as emotionally disturbed but were only 17 percent of the student population in 1998, according to a 2002 report by the National Research Council. 

“When these types of behavioral concerns are raised, some African American parents may respond with a level of suspicion regarding a subtle form of institutional racism,” writes Theus.  

As a black mother, this report resonated with me on a personal level.  This blog details our lives after my son's diagnosis of Asperger’s syndrome in December 2010.  What I haven’t shared is how I almost put a wrench in that.  

Like all new parents, my husband and I waited with baited breath for our son to speak.  At 14 months old, he was walking and saying, “dada.”  Then, he spoke nothing beyond incoherent babbles.  So we taught him sign language.  He became an expert at saying, “please” “more” or “like.”  

By the time he was 18 months old, it became apparent that we wouldn’t get beyond that.  So he was evaluated by a speech pathologist, who concluded that he would be an “emerging talker.”  We were relieved. 

However, when things didn’t improve at two-years-old, we had him evaluated again.  He impressed the speech evaluator with his knowledge of shapes and colors but not so much with his lack of words.  Our son received speech therapy. 

Two months later, the speech pathologist noticed that our son had difficulty engaging in imitation play or recognizing facial cues.  The SP suggested increasing the weekly sessions for our son and an occupational therapy evaluation.  After bombing the evaluation, our son had OT twice a week. 


My husband and I painstaking drilled our son on each lesson along the way.   We thought that our son was progressing.  He could now pronounce words beginning with “p” “d”, “n” with ease.  He was speaking in at least five-word sentences.  He could read books and spell words like “mat” with blocks.  He could follow one-step directives.

As we approached the summer of our son’s third birthday, the SP started recommending that he take the Committee for PreSchool Special Education (CPSE) exam for possible admittance to a local preschool special education program.  

Our son was cheerful, playful, obedient and—finally—articulate.  However, behaviors that my husband and I had accepted had become more pronounced.  Our son was stimming:  he was wearing a groove into our living room as he paced back and forth.  His habit of repeating the last few words of every sentence wasn’t as endearing to outsiders.   His attempts at imitation play weren’t coming along as rapidly as expected. 

The CPSE test loomed in the background.  The SP gently reminded us that the deadline was nearing.  I was dead set against this examination.  Our son was improving—as per confirmations of his providers including her own—why did he need a special education class?  

The diagnosis of autism spectrum disorder wouldn’t occur until a year later.  So I was outraged by the suggestion that our brilliant boy needed this class.  

My degree and background in journalism flew out the window.  Instead, I was a fed-up black woman who felt that my child was being pigeonholed into an educational system that has historically placed a fair share of black children in such settings.     

I vowed that my son would not be “labeled” early in his academic journey.  Skeptical and lacking information, my husband supported the decision. 

Yet despite my fury, there was a gnawing persistent thought in my mind.  He might actually need it.  One afternoon, I discussed some of my concerns with the SP.  Patiently, she sat and listened.  Then, she described a typical special education preschool classroom including how the providers could assist in our son’s development.  

She explained that while our son was smart, without early support, he might recede into the background pretending to understand lessons.  But in reality, he would be lost.  The thought resonated in my head days after the conversation.  Guilt grew and grew in my gut.  So my husband and I discussed the situation again.  We relented and allowed him to take the test. 

After meeting the qualifications, our son began special education preschool in the fall.  A year later, one of his providers in that program, his school counselor (and a special-needs parent), recommended that our son be evaluated by a developmental pediatrician.  He was diagnosed after the initial visit to that doctor.

As a special-needs parent, I walk a tightrope between preserving the unique qualities of my child and preparing him for the demands of our society.  

As an African-American special-needs parent, my constant job is dispelling any false characterizations of his abilities and behaviors.  Even my own.

Empathy or Not?

Lately, I’ve been feeling under the weather with a persistent cold.  Last Wednesday morning, sitting with my son as he ate breakfast, I started sniffling on and off.  He said, “Mommy, do you need to blow your nose?”  Anxiously rushing him along, I said, “No, not yet.”  He asked if I had a cold.  When I responded that I did, he said, “Well, I hope you feel better.”

Is this empathy? Empathy is defined as “Identification with and understanding of another’s feelings, situation, and motives,” according to Webster’s II New College Dictionary. 

One of the characteristics of autism spectrum disorder (ASD) is problems with empathy.  For instance, in a 2004 study by researchers at the University of Cambridge, adults with and without Asperger’s syndrome (AS) or high-functioning autism (HFA) filled out questionnaires including items on empathy.  They found 81 percent of the adults with AS/HFA scored equal to or fewer than 30 points out of 80 compared with 12 percent of adults without AS/HFA.

However, some studies suggest that adults with autism may lack a type of empathy.   In a 2007 study published in the Journal of Autism and Developmental Disorders, researchers at New York University School of Medicine tested adults with and without Asperger's syndrome by measures of empathy and theory of mind including the Interpersonal Reactivity Index (IRI). 

The adults with AS scored lower on theory of mind and cognitive empathy than healthy subjects. But there was no difference between the adults with and without AS on an affective empathy scale of the IRI for empathic concern.  In addition, the AS adults scored higher on another scale regarding personal distress compared with those without AS.  

What’s more, other studies suggest that children—particularly boys—with ASD may report feelings of empathy but difficulties with cognitive perspective-taking (i.e. understanding another person’s point of view).  Still, some of this research is limited and further analysis is needed. 

Maybe my son recognizes a rule-based moral code regarding colds (e.g. a sniffle means that a person has a cold) and responds accordingly.  Or perhaps he is reacting to my familiar facial cues of discomfort.  I refuse to draw any conclusions.

But it adds more dimension as my husband and I flesh out our son’s IEP, putting more emphasis on perspective-taking. And day by day, I am encouraged that, he may recognize the signs of pain and hurt in other people and eventually, he will respond to it. 

Helping Hearts and Minds

Heartsong is a New-York based non-profit organization that provides art and music therapy to special needs children including my five-year-old son.  The organization will hold its 20^th Anniversary Benefit on April 20^th.  For more information and ways to donate or volunteer, please visit their website at heartsong.org.  Here’s a look at some of the great services they provide:


Heartsong Is... from Marion Anderson on Vimeo.

Full Inclusion vs. Special Ed

A new year brings a new onslaught of doctor’s appointments and progress reports.  First up:  a status update with our developmental pediatrician regarding our son’s kindergarten inclusion class.

The school year has been pretty uneventful so far—a few bumps here and there—but it did start off with a little clamor.  On the first day of school, my husband and I overheard a mother frantically complain to another parent regarding the inclusion class.  “I have nothing against those students.  But if they don’t move my daughter, I’m sending her to private school!”

Although this woman didn’t know my son or his classmates, she already formed an impression of their abilities. It didn’t matter that my son could read or identify shapes and colors before his second birthday.  Or that he was already adding and subtracting double-digit numbers.  All that mattered to that woman was that he was one of “those” students.

Many studies suggest that children with autism spectrum disorder may benefit from placement in inclusion classes including more social interaction and engagement.  However, factors such as the intensity and duration of early intervention treatment may influence whether a child is placed in a fully inclusive or mainstream environment.

What’s more, neurotypical children may react positively to sharing a class with other types of students.  In a 2000 study by researchers at Georgia State University, kindergarten students with and without autism were paired together in peer-buddy groups.   After completing the program, they found that the students with autism acquired more social skills.  

In addition, the program helped the nondisabled students develop their play skills. “Teachers reported that the intervention was also helpful for the typically developing students in the class who were shy and had trouble making friends," the authors write.

Still, some research suggests that general education classes may be detrimental for some students with ASD without proper support or preparation.

Bottom Line:  inclusion classes aren’t for everyone.  But everyone has the right to that option, according to the Individuals with Disabilities Education Act (IDEA).  Or whatever constitutes a least restrictive learning environment for your child.  And inclusion alone isn’t a panacea for children with ASD, particularly as social cues become more complicated and abstract.

Perhaps my son wouldn’t have been as prepared for this class without the two years of special-ed preschool that harnessed social skills such as initiating conversation, turn-taking or parallel play.

But conceivably, he may have an advantage over some children and adults in academics and other social nuances including glimmers of empathy (e.g. “Did you have a good night's rest?”) and plenty of warm hugs.

Hi, My Kid Has Autism…

Happy Holidays! I have been struggling with something that many special-needs parents might find disturbing:  admitting to others that my child has autism.  Don’t get me wrong—I am a fierce autism advocate—just ask the many teachers and providers that I’ve had to set straight.

As discussed by many experts, my husband and I informed our closest set of family and friends (e.g. aunts, uncles, cousins, etc.) of our son’s diagnosis of Asperger’s syndrome.  Many of these people were not surprised:  they’ve viewed his behavior on a consistent basis.  Some studies have suggested that parents of children with autism were aware of developmental problems as early as 18 months.  It may be the same with extended family and friends. 

My problem is that loose, sporadic set of relatives and acquaintances.  My reason:  Ignorance.  For instance, I recently admitted to a longtime friend that my son had been diagnosed. After well-meaning platitudes (e.g. “sorry to hear that”), she said that he would "grow out of it."  This isn't measles or mumps.  No, it is a lifelong condition, I replied hastily. 

A direct and frank proclamation may be beneficial for some children with ASD.  For instance, in the book, Coming Out Asperger, Dinah Murray writes, “Having an authoritative diagnosis and disclosing that diagnosis have tended to be the keys to unlocking resources, and so hard disclosure is sometimes essential for practical reasons.”

Also, some past research suggests that disclosure affects how children with autism are evaluated by other people.  Adults viewed a child’s behavior more positively when identified as having autism, according to a 2008 study published in Journal of Autism and Developmental Disorders.  But the results depended on the type of behavior shown. 

Still, hard disclosure does allow the opportunity to get it all out there.  These are my strengths and weaknesses—just like everyone else.  It gets complicated as my son grows older (e.g. classmates, romantic ties, work, etc.) and the choice becomes his, not mine.

Applied Behavior Analysis: Achievement versus Actual Fact

In the Part three installment of their series on autism, The L.A. Times continues exploring facts and misconceptions surrounding the neurological disorder.  This time, writer Alan Zarembo focuses his lens on applied behavior analysis (ABA). 

Some autism experts question the cost, intensity and effectiveness of the therapy.  For instance, autism specialist Dr. Bennett Leventhal of the Nathan Kline Institute for Psychiatric Research in Orangeburg, N.Y, notes in the article that “in rare cases an autistic child receiving therapy can improve enough to pass for normal.

But others who are deemed recovered ‘probably never really had autism in the first place,’ he said.”

There are some studies that suggest that not all cases benefit from ABA.  Children with autism spectrum disorder didn’t improve from more intensive ABA programs compared with targeted or less intensive programs, according to a prospective study published last month in Research in Developmental Disabilities.

Currently, my husband and I do not—I repeat—do not use this therapy for our son.  However, I agree with the assertion that there needs to be an alternative to ABA, particularly in severe cases of autism.  As a special-needs parent, it makes me nervous putting all my eggs in one basket, especially if that basket springs a leak.

But there are some parents who rely on ABA just to make it through the week.  There isn’t a 100 percent success rate on any therapy for autism.  There can’t be for a disorder that is still in the early throes of research and treatment. 

It sucks that some of us may get a “typically” functioning child and some of us may not (sorry, I don’t believe in total recovery).  But I believe in the right to try anything to reach your child.  I believe fighting for any potential therapy so that child can hold a gaze longer or say, “I love you.”  And as a special-need parent, I will go to war with anybody who tries to bar me from that right.