Linking the Circles

It has been an interesting school year.  My son’s general education teacher has been impressed with the changes he has made since attending his extracurricular social skills group.  For example, now he readily starts conversations with other classmates.  As a result, she started a weekly rotating friendship circle including him and four other students.  We are humbled by her kindness.  We know this doesn't happen all the time.  In fact, it was only three years ago that I got in a heated telephone conversation with his preschool teacher.  So my husband and I are grateful. 

So since January, our son has been a part of this friendship circle at his elementary school.  The group meets once a week during recess and they discuss topics ranging from bullying to favorite television shows.  Also, they cover other areas including teamwork and altering voice tone according to your environment (e.g. not shouting in the classroom).

 

Friendship Circles or the “Circle of Friends” approach can be used for including individuals with disabilities into schools by forming a group composed of other typically-developing students around a “target” child with special needs.  The circle is usually led by a teacher or administrator who serves as the facilitator.  The groups are focused on equipping special-needs students with socially acceptable responses to everyday situations.

A number of studies suggest that participation in friendship circles may be linked with improved behavior by children with disabilities.  For instance, a 2003 study in The Journal of Special Education found that a weekly Circle of Friends program had positive effects on the social acceptance of the target children by other classmates after six weeks.    

In addition, in a 1998 study published in the British Journal of Special Education, facilitators reported that students with autism who participated in a circle of friends program showed improvements such as reduced anxiety and higher levels of peer contact.

Still, some research suggests that some children with disabilities may not learn new social skills after participating in friendship circles.  However, the programs may promote an environment where special-needs students can become a part of the school’s social community. 

Also, several peer participants reported a higher degree of compassion and acceptance towards children with disabilities.  And some parents of special-needs students said they felt less alienated and isolated after their child completed the program.

As we go into summer, I am a little nervous about the changes that may come with second grade (e.g. I actually joked with my son’s general education teacher about her possibly looping with the class).  But life is about the acceptance of change.  That makes it especially challenging because that’s not my son’s strong suit (or mine).  So I guess we will have to count on the three P's to get us through:  Preparation, persuasion—and lots and lots of prayer. 

Reading Rules

During morning drop-offs at school, I’m noticing that our son approaches the least responsive kids.  There is Situation No. 1:  He walks over to a classmate and whispers in a low monotone voice, “Hi.”  Usually, I will urge him to speak louder.  He slowly moves closer and whispers again.  The classmate looks at him blankly.  Then, there’s Situation No. 2:  My son walks over to a group of roughhousing children and says, “Hi.”  They barely notice him or respond. 

As evidenced, our son isn’t afraid to approach other children or start conversations.  Nor is he shy about asking other children to play games with him.  However, he isn’t clued into the “hidden curriculum.”  The hidden curriculum refers to the unwritten social rules that typically-developing people absorb automatically but may elude students with autism.  For instance, shouting at friends during recess is fine but shouting at your teacher in the classroom is unacceptable.

Also, our son may not pick up on the nonverbal language being communicated (e.g. if a friend stands alone in a corner with a sullen facial expression; it is probably not a good time to talk).  A number of studies have found that problems with reading facial expressions and vocal tones are related to issues such as lower social competence, higher social anxiety and depression.

However, some findings are inconsistent and show gender and age differences.  Some research indicates that older children are more accurate at using both situational and expressive facial cues for judging emotions than younger children.  Also, in a 2003 study published in The Journal of Genetic Psychology, 30 elementary school children participated in six weekly or biweekly half-hour sessions where they were taught lessons on reading emotions on adult and child faces.  After four weeks, there was significant improvement in the children’s accuracy for judging facial cues compared with children who didn’t attend the therapy sessions.  What’s more, investigators also found that improvement on identifying facial expression was linked with lower social anxiety and higher self-worth for girls but increased feelings of negative self-concept for boys.   

So in an effort towards meeting these challenges, our son is attending a social skills group at Confident Kid Club in Pelham, NY.  The group focuses on areas such as appropriate eye contact, gauging body language and learning what makes a good friend.   But by no means are we trying to “fix” him.  First and foremost, we want him to be himself.  Since he started preschool four years ago, he has always managed to find friends in his class.  For example, his classmate, K., is also his current recess buddy.  Now, it is time to learn other nuances such as what other types of relationships are worth pursuing and which are not.  The rest will work itself out. 

The Future of Autism

It has been a year since I started blogging about our experiences.  Since that time, I am humbled by the support and information that I have received from other parents of autistic children.  I am grateful that treatment and services for individuals with ASD has improved over the years. Still, this is a long-haul journey and with many bumps along the road. 

As a parent of a child with autism, I’m learning that there are many misconceptions regarding the condition.  Now, more than ever, we need to bridge the gap between the "neurotypicals" and those with ASD.  People unfamiliar with the disorder require patience and facts, not condemnation (with some exceptions). 

Autism is more than an umbrella term for developmental disorders.  The term describes an array of different people with unique challenges. Autism is not a precursor to violent outbursts against others or an excuse for lashing out against people with the condition.  It is another way of seeing the world.  For instance, my son sees patterns in math problems but has difficulty starting conversations in the playground.           

Instead of focusing on labels, we should be honing in on more social communication efforts for those with special-needs.  In light of recent events, pushing for social inclusion of autistic individuals in our communities including schools, places of worship, and other organizations must be a top priority.  Let’s be honest:  Our natural tendencies may make us shy away from people with behavioral issues.  However, social isolation hurts all of us, not simply the individual.

In addition, we should be reaching out to other parents of children in need and gently offering support and resources.  Regardless of socioeconomic status, many parents don’t have accurate information or access to services that will benefit their child.  For instance, I learned of music and swim therapy programs from other mothers. Most importantly, knowing other families are traveling down this bumpy road helps us through the rough times. 

As we celebrate this holiday season, I wish for several things.  From a personal standpoint, I would like more randomized controlled trials on effective social skills programs.  Though some studies have shown improvements in social communication skills, others are inconclusive.  Autistic individuals should have treatments tailored to their specific needs.

Also, while there is strong emphasis on early intervention, there must be more services for adolescents and young adults.  For instance, many schools do not provide teacher aides to autistic children who excel academically but flounder socially. Some therapies are provided to children with developmental delays only once a week.  And as many young adults age out of the school system, there aren’t enough facilities that effectively train them for productive lives.  

As parents of those with special-needs, our job is fighting misperceptions about our children until they can do it themselves.  My son, and others like him, will have to lead the charge, combating stereotypes with accurate information about this disorder. They will be faced with advocating for themselves and others who can’t.  We still have a long way to go.  But with perseverance and strength we’ll slowly reach the destination ahead.

Searching for Social Skills Success

It has been awhile since my last post.  It was a deliberate choice.  Breaking down the steady barrage of autism reports can be an arduous task.  In addition, other catastrophic events—like a superstorm—push other things further on the back burner.  But we’ve been plowing through the school year with a lot of success so far. 

According to the social skills group teacher, our son has made some dramatic strides since last year.  He interacts better with other group members.  Last year, the group was composed of students, whom my son described as “bad kids” (i.e. talked in class, yelled at or was aggressive towards teacher).  So the lessons addressed issues such as “teeth are not for biting” or “hands are not for hitting.”  Since our son never had a problem with aggression, we called an IEP meeting to address these concerns and broaden the topics covered during the sessions. 

At first, there was limited adjustment:  For instance, this year, the first class dealt with feelings (e.g. Are you happy/sad/angry?). Still, many sessions address aggression issues.  Preferably, my husband and I would like more focus on areas such as initiating conversation, role-playing, social scripts and perspective-taking. In addition, the teacher mentioned that he constantly prods our son with questions compared with the other children who “volunteer” information. 

Also, I question the credentials of this teacher and whether he has any specialization in autism (my guess, probably not).  During the recent IEP meeting, a school psychologist mentioned that our son was the only student within the general education population diagnosed with ASD.  Other students with autism, many of whom fall on the severe end of the spectrum, are annexed into another building for children with special- needs. 

So I realize that we will need additional therapy to meet our son’s social skills demands.  I wish that his school offered a parent education/training program for improving social communication for high-functioning adolescents with ASD.  In fact, some research has shown that training parents as “co-therapists” is effective at improving behavior and increasing language skills for children with autism. 

However, very few schools offer this type of program.  Many parent training/education programs focus on early intervention with young children (under age 5) and take place in the homes of individual families. 

What’s more, other studies examining parent programs have reported positive changes in parent-child interactions.  And solid evidence has shown that parents enrolled in these programs report less stress and greater self-efficacy (the belief about one’s ability to act in different situations).

For instance, in a 2006 study published in the Journal of Positive Behavior Interventions, investigators followed eight students, ages 3 to 4, diagnosed with autism and their families.  The children were enrolled in early childhood special education classrooms that were part of the Oregon Statewide Regional Program Autism Training Sites.  The classrooms used techniques based on applied behavior analysis such as pivotal response training. 

In addition, the children’s parents participated in weekly sessions where they were taught these strategies for improving communication during daily activities.  After nine weeks, parents reported improvement and increased knowledge of their child’s social communication skills.

But while several studies have shown benefits for parent training/education programs, there are some drawbacks to consider. Some limitations with this type of intervention include inconsistent professional support and inaccurate skill application by parents. 

I am not suggesting that parent training should replace therapies by clinicians, schools and other organizations.  But any additional intervention will benefit children with special-needs.  Unfortunately, in some instances, my frustration lies in the limited expertise and resources available in our community for preparing our child for the future.

Splashing Through Summer

Summer is flying by too quickly.  Lots of bike-riding, art and music therapy on Saturdays, and whatever else we can pack in during the season.  And the newest addition to our repertoire—swimming!  Another special-needs parent clued me in to Angelfish Therapy, an organization that provides aquatic therapy, swimming instruction, and even a three-week summer camp.  So my husband and I decided to sign our son up for weekly swimming lessons. 

After the first lesson, our son said, “I love swimming.”  But by the second class, the beginner frights set in.  When the instructor tried letting him go in the water, our son yelped and screamed, “NOOOO!”  So he seems anxious yet thrilled by the water. 

It is well known that physical activity is beneficial for typically-developing adults and children. But strong evidence indicates that exercise can improve motor deficits, stereotypies and social skills for children with autism spectrum disorder.  What’s more, some research suggests that exercise has positive effects on communication and sensory skills, too. 

Many children with ASD have motor skills impairments and are less active than typically-developing children.  Other factors such as cost, access to particular programs and weight gain (e.g. side effect from medication use) can affect exercise for children with developmental disorders.  But, with the appropriate support, physical activity can benefit students with disabilities both inside and outside the classroom. 

For instance, in a recent study in Research in Autism Spectrum Disorders, researchers pooled 16 studies where adults and children with ASD engaged in sports such as horseback riding, weight lifting and jogging.  Based on the earlier findings, they found that physical activity is linked to improved motor and social skills for participants with ASD.  

In addition, a 2010 review study suggests that exercise is related to decreases in disruptive behavior such as stereotypies (e.g. rocking, arm flapping) and increases in positive behaviors (e.g. better focusing, academic performance).  Also, some evidence indicates that vigorous exercise may enhance these improvements compared with mild exercise.  

Some experts theorize that the reduction in stereotypic behaviors may be due to fatigue or the physical stimulation that exercise provides.  However, more research is needed to determine how physical activity affects people across the spectrum including type and how long the effects last.   

Motor and social skills deficits make certain sports more challenging than others.  Many children with ASD may choose individual activities (e.g. running) compared with team sport activities (e.g. soccer).  We chose swimming lessons for our son for similar reasons—and it’s fun! 

Our son has had some anxiety attacks in the past, so we went with a program that specializes in helping children with special needs.  However, there are many affordable options available for starting a workout regimen for children with ASD.

Autism and Aquatic Exercise

Swimming is one of the most popular forms of therapeutic activities for people with autism spectrum disorder.  Research is limited on the effects of swimming or aquatic therapy on children with ASD.  But some studies suggest that aquatic exercises promote better daily living activities and body function for children with other disabilities such as cerebral palsy.

Aquatic exercises are low-impact yet provide enough resistance for building up muscles and aerobic capacity.  And some research indicates that this form of exercise may improve social skills, swimming ability and endurance levels for children with ASD. 

For instance, a 2008 study in Developmental Medicine and Child Neurology, researchers recruited 16 children with various developmental disabilities including autism for a 14-week aquatic aerobic exercise program.  The children, ages 6 to 11, performed activities such as relay races, swam laps and strengthening exercises (e.g. bar bells).  Researchers measured factors such as heart rate and muscle strength.  

At the end of the program, the results showed participants improved their exercise capacity including longer periods of physical activity within their training heart rate.  

I’m looking forward to watching our son transform from a nervous novice into a fearless fish during these lessons.  And the rest of the time?  My husband and I are scanning our brains for activities that tire a six-year-old without doing the same to us.  Enjoy the rest of your summer!

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.