Play Date Potential?

Our son has been talking our heads off about a cute little girl in his class.  “I would love to have a picnic with A. in the backyard,” he says while spooning his morning oatmeal.  For months, he has been racing around the school yard with his classmate, A., during recess.  So, I’m not surprised at his suggestion to invite her over.  Since our son is in an inclusion class, I’m not sure if A. is a NT (neurotypical) or ASD kid.  Nonetheless, I don’t have a problem with hosting a potential play date.

Still, here’s the thing:  Our son has the attention-span of a gnat.  A worst-case scenario is he and A. play tag for ten minutes.  Then, he gets bored and wrestles with his "Super Why!" doll, stranding A. by herself for the rest of the afternoon.  But we can remedy that with tons of sugary treats and other nap-worthy games.  Also, I don’t have any experience with formal play dates.  

Unless, a “play date” constitutes raiding a friend’s fridge for snacks before scurrying back outside.  So hosting this type of get-together is foreign territory for all of us.

Maintaining friendships is critical towards building social skills—and it could affect school performance.  Conflict in friendships, particularly for boys, is related to lower levels of school involvement and higher levels of loneliness. 

Friendships for children with autism spectrum disorder may be challenging due to difficulties with social cognition including the ability to read and interpret social cues.  And they have fewer reciprocal friendships compared with typically-developing children.   

Boys with autism, like our son, are more likely to have friendships with girls than boys without the condition.  Other factors such as verbal ability may also influence friendship quality, too. 

A number of studies suggest that “mixed” friendships between children with high-functioning autism spectrum disorder (HFASD) and typically-developing peers may improve social skills for the former.  In a 2008 study in the Journal of Autism and Developmental Disorders, researchers found that children in mixed friendships were more responsive and cohesive to each other than “non-mixed” friendships (i.e. friendships between children with HFASD and students with disabilities). 

In addition, the children in mixed friendships showed higher levels of positive social orientation, receptive language skills and more complex level of coordinated play compared with those in non-mixed relationships.  But students with HFASD in mixed relationships had fewer opportunities to lead and initiate activities than in the non-mixed friendships. 

Still, these relationships—regardless of friendship type—are beneficial for children with HFASD.  The authors write, “…it is not surprising that all the children in the current study, which required having at least one friend, had achieved a relatively high level of social competence.” 

Pros of Play Dates

Some research indicates that frequent play dates (arranged by the parent or child) are linked with a larger range of playmates.  For example, findings from a small study suggest children with HFASD who had more hosted play dates in their homes tended to use more turn-taking behaviors with peers on the school play ground such as conversing and mutually offering objects. 

What’s more, the children with HFASD also got more positive responses to their initiations from other students, according to the study published in the Journal of Child Psychology and Psychiatry and Allied Disciplines.          

We’ll probably wait until the end of the school year before broaching a possible play date with our son.  But after a school semester of many ups and downs, I can appreciate the simplicity of seeing him smile at the sight of his new friend.

Figuring out Functional Assessments

Recently, my husband and I have been trying—unsuccessfully—to schedule a CSE meeting to re-evaluate our son’s social skills plan.  Also, at the advice of a parent advocate, we want to schedule a functional behavior assessment to address our son’s anxiety attacks.  Now, the attacks are consistent—and random. 

The latest episode happened at home when my son viewed a snippet of a man crooning the lyrics to “Bohemian Rhapsody" in the back of a police cruiser.   Scarey—yes—but he has seen far worse with no adverse reaction.

What is it?

According to the New York State Education Department website, a functional behavior assessment (FBA) is an umbrella term used for the process that identifies problem behavior (e.g. aggression, self-injury, etc.) by a child that may “impede learning."  For instance, our son makes a hasty exit out of the classroom when certain animated movies are shown.  This action definitely impedes learning for him and, possibly, other students in the classroom. 

In 1997, amendments were made to the Individuals with Disabilities Education Act (IDEA) requiring the use of FBA if a student’s change in placement hinges on these assessments.  But the amendments failed to define what constitutes a valid FBA.  My son’s anxiety attacks do not fall in this category (i.e. they don’t warrant any changes).  And this may affect our ability to obtain an FBA:  the attacks are somewhat disruptive but not harmful to himself or others. 

The FBA process includes four steps:  1) identify the problem behavior; 2) forming a hypothesis or guess on environmental triggers that affect the behavior; 3) testing the hypothesis; and 4) building an intervention plan based on the confirmed hypothesis.

Most importantly, a FBA attempts to narrow down the function of the behavior.  Functions may fall into several categories such as attention-seeking, self-stimulation or escape.  However, a FBA would pinpoint any particular events that happen before, during and after his reaction.  

   

There are three types of functional behavior assessments: an indirect assessment including interviews with all of the adults who interact with the child and analyzing other tools such as ratings scales; a descriptive assessment such as direct observation by the evaluator; and a functional analysis, a more detailed evaluation of the particular behavior.    

In a functional analysis, certain events within the environment may be manipulated for testing out the hypothesis on the particular behavior. And some research suggests that treatments based on functional analysis may be more effective in curbing problem behavior compared with other types of behavioral assessments.

Also, some behaviors can be positively, negatively or automatically (independent of social environment) reinforced.  For instance, a child may become aggressive and hit her teacher every Monday afternoon. This results in the child being sent home early these particular days.  If the child prefers free time at home with Grandma instead of being in class then her actions have been reinforced to that event.  Accurately nailing down other factors related to this behavior is critical for setting an effective behavioral invention plan in place.   

A behavioral intervention plan is a structured way to change the environment and prevent the behavior from happening again.  Also, it replaces the undesired behavior with more socially acceptable actions.  For instance, the aggressive child might be taught other ways to ask for help or communicate other needs.       

Solid research suggests that problem behavior in children with ASD may be socially reinforced too, according to a 2009 study in the Journal of Autism and Developmental Disorders.  For this study, researchers examined 32 cases of children diagnosed with developmental disabilities including autism, Asperger’s syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) that completed functional assessments. 

Problem behavior in children with ASD was mostly linked with social reinforcement such as seeking attention or access to a tangible item (88 percent).  In addition, children diagnosed with Asperger’s syndrome or PDD-NOS were less likely to have escape as a function of problem behavior than children with ASD. 

But the children with Asperger’s or PDD-NOS were more likely to show problem behavior as a function of restoring a preferred activity than the children with ASD. This suggests that children with ASD may not have socially appropriate ways for accessing this reinforcement. 

                       

Truthfully, I don’t know if we will walk out of our next CSE meeting with a functional behavioral assessment set in place.  But I do know that my husband and I will fight for a plan that includes the best treatment for these anxiety attacks—and ultimately—the best long-term interests of our son.

Gastro Grossness

            Good to be back!  The last few weeks I’ve been walking a tightrope between school and freelance assignments.   What’s more, our son has had some serious stomach issues.  Two weeks ago, he was vomiting almost once a day.

Our son has always had a very sensitive palate.  Both my husband and I can attest to a few Exorcist sessions with him on a consistent basis.  But lately these incidents have become more frequent.

Past research suggests that gastrointestinal symptoms are commonly reported in children with autism.  In fact, a recent study by researchers at Columbia University in New York found that children with autism and gastrointestinal problems had high levels of the bacterium, Sutterella, in their gut.

They found large amounts of Sutterella in 12 out 23 tissue samples from children with autism and gastrointestinal dysfunction but in none of nine typically-developing children with gastrointestinal dysfunction.  However, the authors write, “...it remains unclear whether Sutterella species contribute to inflammation and infection or are simply normal inhabitants of the human microbiota in some individuals.”

What’s more, children with ASD who have gastrointestinal disorders may have behavioral problems, too.  In a 2009 study by researchers at Yale University, children with gastrointestinal problems including those with ASD had higher scores on tests of irritability, anxiety, and social withdrawal.  As mentioned in a previous post, my son has anxiety attacks.  But it is unclear if these two things are related.

However, there is no proven causal link between gastrointestinal disturbance and autism spectrum disorder.  In a 2010 study in Pediatrics, the authors write, “The existence of a gastrointestinal disturbance specific to persons with ASD…has not been established.”

So my husband and I thought our son might have a food allergy.   My own allergic reactions ranging from hay fever to eczema makes him a prime target.  We scheduled an appointment with a pediatric gastroenterologist.  Meanwhile, we started eliminating certain foods such as oat cereal from his regular diet.

In addition, like many children with and without autism spectrum disorder, our son is a picky eater.  He can subsist on a lunch time diet of hot dogs (sans bun) and carrots or pizza until perpetuity.

In fact, some research indicates that children with ASD may have slightly more food selectivity and problem feeding behaviors compared with typically-developing children.  The key word is slightly: these differences are small.   But many of these studies are limited and inconclusive.

For instance, children with autism were marginally more likely to show picky eating behavior than their siblings or matched typically-developing children, according to a 2008 study published in the Journal of Autism and Developmental Disorders.  However, routine feeding behavior rates were the same in all groups of children although children with ASD were more likely to show problematic eating and feeding behaviors.

Treatment Options

Since our son hasn’t been diagnosed with any condition yet, discussing treatment options for him is premature.  However, depending on the diagnosis and severity of the condition, options can range specialized diets such as the glucose-free/casein-free diet, drug therapy, or even surgery in some cases.

We are all counting the days until our appointment with the GI specialist.  Until then, my family looks forward to ending our ride on this spew-tastic voyage!


*P.S.:  Our son was diagnosed with gastritis.  A two-month treatment of pepcid or prevacid should clear up the condition.

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.