One in 68 Children has Autism

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Obesity and the Autism Population (more on Mo’s Progress)

December 19, 2016 3:00 pm Published by

A few months have gone by since Mo’s last update…and the ASP is happy to report that he continues to lose weight and exercise like the athlete he has become. Mo has officially lost 73 pounds!

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More than 6 months ago, Mo was assigned a personal trainer through Title Boxing Club Forest Hills, where he has learned to exercise 3-4 times a week. When Mo first began, he had a hard time walking to the train station from the Astoria 38th street ASP (roughly, a 5-7 minute walk). Mo is now walking 3-4 miles on the treadmill with ease. In fact, he participated in QSAC 5k alongside his trainer and ASP Group Leader in October. A huge accomplishment from day one!

 

mo13    mo4

Mo has now gained enough muscle strength to do modified burpees, a difficult exercise, even for trained athletes. Mo has grown to love his exercise routine and continues to self-monitor his caloric intake. He has learned to make appropriate food choices and use portion control. Mo’s demeanor and confidence in himself have improved significantly. He has demonstrated that weight loss is possible, irrespective of a disability. New behaviors and routines can be learned by adapting instructional methods to meet the learner’s needs and providing reinforcement for target responses. Mo often requires visual and model prompts which are quickly faded out in order to learn new exercises.

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Mo’s next milestones will be to reach the 100lb weight loss mark and run the Spartan special heat at Citifield in May 2017!

Obesity and the Autism Population (An update on Mo’s Progress)

August 8, 2016 3:00 pm Published by

A few months ago, the After School program introduced everyone to a young man, affectionately known as Mo. Mo was assigned a personal trainer through Title Boxing Club Forest Hills in order to help lose weight and become physically fit. In addition, the ASP designed a weight loss program to help teach him healthier eating habits, such as portion control and increasing his fruits and vegetables, while decreasing foods with high sugar and saturated fats. Mo began to track the foods he ate with the help of his family and the ASP. Mo has learned to make healthier choices, such as lean proteins and green vegetables. In addition, he has become much more active at the gym. Mo began by working out twice a week and has recently started working out three times a week. He is now able to hold a push up position for 1 minute intervals, he can walk 2 miles on the treadmill without stopping or holding on, and he can lifts weights to name a few things. Mo has now been on his weight loss journey for about 5 months and has lost a total of 48 pounds and 6% of his body fat.

Mo enjoys going to the gym and working on his eating habits; his motivation to work hard is visible and has grown steadily. Mo has become very independent with making appropriate food choices and is independently disciplined.

Below are pictures throughout the last few months. We will continue to track his progress and journey in the months to come.

augmo1

    When Mo lost 35 pounds he proudly held up a 35 pound weight with his trainer to              show how much he had lost

 

 

 

 

 

 

 

 

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Mo before and after. The shirt and shorts on the left were form fitting when Mo first started. Now they are too big for him

 

 

 

 

 

 

 

 

 

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Mo at his current weight loss…48 pounds down!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Obesity and the Autism Population

February 8, 2016 3:00 pm Published by

According to the Center for Disease Control (CDC), more than one third of adults in the United States are obese. The prevalence of obesity in the United States has more than doubled over the past 40 years; however, these prevalence rates do not make mention to individuals with developmental disabilities.

In another report published by the CDC in 2014, obesity was reported to be the highest among teens with learning and behavioral developmental disabilities, and greater among children diagnosed with autism spectrum disorder (ASD). Adolescents with ASD were two times more likely to be obese than their typically developing peers.

Being overweight can put children at increased risk for numerous health problems, both in childhood and as adults, including diabetes, cardiovascular disease, bone and joint problems, and even depression. The effects of these conditions may take an even greater toll on individuals with autism, in combination with common autism symptoms and some highly co-morbid conditions such as gastrointestinal problems as well as depression and anxiety.

Unfortunately, little is known about the correlations of obesity within the autism community. A study by Dreyer et al. (2015) reported that children with ASD engaged in less physical activity in comparison to their typically developing peers. Contributing factors which may add to the risk of obesity included selective eating habits (i.e., eating only fried foods or other specific food items), and lacking the skills necessary to engage in activities which encourage physical activity.

Even less is known about the overall health status of adults with autism. A study by Croen et al (2015) described the psychiatric and medical conditions of a large, diverse population with autism within the United States. Nearly all medical conditions examined were significantly more common in adults with autism including obesity, hypertension, diabetes, gastrointestinal and sleep disorders, seizures, and immune conditions.

Given the current obesity prevalence rates within the United States, and specifically within the autism population, it is important to consider weight management strategies and approaches for individuals with ASD. In addition, the varying degrees of communication and social deficits within the population requires approaches that must be individualized in order for weight management to be possible.

As part of a recent partnership with Title Boxing Club Forest Hills, the club has graciously extended their personal trainers and services to one of our ASP students in order to help him lose weight and become healthier. Mohmad Abdelnabi (a.k.a as Mo), is a 23 year old young man who has attended QSAC’s after school program since the age of five. Mo has struggled with his weight from an early age. Mo was recently selected to participate in a fitness program designed by Title Boxing Club Forest Hills. Mo has been assigned two personal trainers who will help him to gradually build up his cardio endurance, as well as build muscle strength in order to lose weight. QSAC’s ASP will work with Mo and his family to help teach him healthier eating habits through the use of applied behavior analysis. Mo’s progress will be monitored and documented throughout the next few months.

 

Mo2Mo1

 

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Rocio Chavez, MA., MSEd., LBA is currently the Assistant Director for the Quality Services for the Autism Community’s (QSAC) After School Programs. She also facilitates a social skills group for children with high functioning autism and a sibling support group. Rocio holds a Master’s degree in Clinical Behavioral Applications from Queens College, and a dual master’s degree in General and Special Education, Birth-Grade 2 from Touro College. Rocio is also a licensed behavior analyst. She has provided clinical consultations in school and home based settings, and most recently provided consultation for the Broadway play The Curious Incident of The Dog in the Nighttime. Rocio has also assisted in designing staff training and student curriculum and has co-authored a chapter in the book Behavioral Detectives: A Staff Training Exercise Book in Applied Behavior Analysis. She has presented on various topics including stimulus-stimulus pairing and reinforcer assessments at The New York State Association for Behavior Analysis (NYSABA) convention as well as The Association for Behavior Analysis International (ABAI) convention. Rocio has conducted research on self-management training in preschoolers with autism and stimulus-stimulus pairing. She has worked with children and young adults on the autism spectrum for over ten years.

 

References

Center for Disease Control. (2015) Adult Obesity Facts. Retrieved from

http://www.cdc.gov/obesity/data/adult.html

Center for Disease Control. (2014). Key Findings: Prevalence and Impact of Unhealthy Weight

in a National Sample of US adolescents with Autism and other Learning and Behavioral

Disorders. Retrieved from http://www.cdc.gov/ncbddd/autism/features/keyfindings-unhealthy-weight.html

Croen, L. A., Zerbo, O., Qian, Y., Massolo, M.L., Rich. S., Sydney, S., and Kripke,

C., (2015) The health status of adults on the autism spectrum. Autism, 19 (7). doi:

10.1177/1362361315577517

Dreyer, G.L., Borner, K.B., Nadler, C.B., Poppert, K.M., Odar-Stough, C., Swinburne-Romine.

R., and Davis, A.M., (2015) Prevalence and health correlates of overweight and obesity in children with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics. 36 (7). doi: 10.1097/DBP.0000000000000198.

 

Strategies to Help Get Through the Holiday Season

November 16, 2015 3:00 pm Published by

The 2015 holiday season is officially here! And we begin our preparations to spend time with loved ones and partake in holiday events. The holiday season can be a stressful time of the year for everyone, but it can be especially challenging for an individual with an autism spectrum disorder. A little advanced planning and the following proactive strategies can help to decrease a loved ones’ anxiety and enhance their holiday experience with the whole family.

  • Keep the individual’s behavioral and sensory profile in mind when planning holiday events. For example, how will they respond to specific traditions? How long can they tolerate being seated at the table? Will they be able to tolerate noise levels? Do they have any sensitivities to specific foods, sounds, people, pets, etc.?
  • Prepare for the environment where the event will take place. If the event is outside of your home, consider designating a specific area for them to use in case they need some time away to decompress. Holiday events can be overwhelming and there may be too much sensory stimulation for the individual.
  • Prepare family members, especially children, of the individual’s needs and what they can do to help. Teach them some easy communication strategies. Communication is key!
  • Prior to any holiday event, set aside some time to practice sitting at the table as it would be the day of the gathering. This can include adjusting the lighting of the room, playing music, etc. If the individual uses a schedule, begin to incorporate a picture or text of the holiday event into their schedule during practice time. Make sure to provide reinforcement during and right after practice time.
  • Expose the individual to holiday food before the family gathering, in order to see what they do and do not like. This allows the individual to become more comfortable with the food offered the day of the event. Provide reinforcement if they try any new foods (e.g., a piece of their favorite food for trying a new food). Be prepared to bring or make foods which the individual enjoys so they can still participate at the table with the rest of the family in the event that their food repertoire is limited.
  • Set aside some activities that the individual likes if you know they will find the holiday event unpleasant, and/or if they have a short attention span. If the individual cannot tolerate loud noises, consider allowing them to wear headphones or build in breaks away from everything throughout the event.
  • When decorating your home for the holidays, consider doing so in gradual steps. Individuals with autism often thrive in predictable environments, and may not transition well when there are sudden changes in their routine and/or environment. Changing your home’s appearance in one day may be overwhelming to some. Give the individual an opportunity to help by allowing them to manipulate the decorations (as long as it is safe to do so) and help put them up. You can also give them an activity, such as stringing popcorn, together to hang on the tree.
  • Think about the individual’s sensitivity to lights if they have one. You can take them to a holiday themed store prior to decorating your home and observe their reactions. If the lights seem unpleasant, think about alternative decorations.
  • If the individual is at risk for putting things in their mouth (e.g., pine needles) or breaking ornaments, consider alternatives such as an artificial tree, placing the tree out of reach, plastic ornaments, etc.
  • Keep in mind the individual’s fine motor skills and practice opening presents if necessary. Use pictures on the gifts instead of name tags to recognize who the gift givers are.
  • If the individual comprehends the use of a calendar, use this as a tool to countdown the days until the event. This will offer greater predictability in preparation for the event.
  • Make sure to reinforce appropriate behaviors throughout the event!
  • If the individual uses an augmentative form of communication (e.g., iPad or PECS book), make sure they have it with them at all times. Communication is very important! Also, reinforce spontaneous attempts to communicate.
  • Schedule an early dinner or eat before the event if this will assist the individual.
  • Assign activities and tasks that the individual can handle so they can participate in some way (e.g., setting the table, cleaning up, playing with other children if age appropriate).
  • Keep an eye on precursor behaviors that may lead the individual to engage in maladaptive behaviors and intervene accordingly. For example, ask them if they need a break or take them for a walk.

Most importantly have fun and enjoy the holidays!!!!!!!

 

 

rchavez-blog

 

Rocio Chavez, MA., MSEd., LBA is currently the Assistant Director for the Quality Services for the Autism Community’s (QSAC) After School Programs. She also facilitates a social skills group for children with high functioning autism and a sibling support group. Rocio holds a Master’s degree in Clinical Behavioral Applications from Queens College, and a dual master’s degree in General and Special Education, Birth-Grade 2 from Touro College. Rocio is also a licensed behavior analyst. She has provided clinical consultations in school and home based settings, and most recently provided consultation for the Broadway play The Curious Incident of The Dog in the Nighttime. Rocio has also assisted in designing staff training and student curriculum and has co-authored a chapter in the book Behavioral Detectives: A Staff Training Exercise Book in Applied Behavior Analysis. She has presented on various topics including stimulus-stimulus pairing and reinforcer assessments at The New York State Association for Behavior Analysis (NYSABA) convention as well as The Association for Behavior Analysis International (ABAI) convention. Rocio has conducted research on self-management training in preschoolers with autism and stimulus-stimulus pairing. She has worked with children and young adults on the autism spectrum for over ten years.

Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism

April 13, 2015 3:00 pm Published by

April is not only autism awareness month, but it is also the time of the year when we begin to see life return to the city. The weather is getting warmer, the trees and flowers are beginning to bloom, and we are enthused about going out and getting active; however, for families who have children with an autism spectrum disorder (ASD), participating in activities is not always easy. Individuals with autism may be resistant to physical activity, overstimulated by their environment, and difficult to motivate. As a result, they may get left out of activities with important opportunities.  Participating in physical activity is important for the individual with an ASD in order to be able to integrate into the community, interact with peers, and for their overall health.  When implemented correctly, a physical activity routine can provide the individual with great benefits. Physical activity does not have to be strenuous or uncomfortable, it can be as simple as taking a short walk.

The following is an article by Geraldine Dawson, Ph.D., Chief Science Officer, Autism Speaks and Michael Rosanoff, MPH, Assistant Director of Research and Public Health, Autism Speaks who discuss the positive impact of fitness for individuals with an ASD using the same behavioral interventions utilized to teach other skills (e.g., tooth brushing).

Autism is a complex neurobiological, developmental disorder that is typically diagnosed in childhood and often lasts throughout a person’s lifetime. The hallmark characteristics of autism include an impaired ability to communicate and relate to others socially, a restricted range of activities, and repetitive behaviors such as following very specific routines. While the causes of autism are unknown and preventative measures have yet to be discovered, there does exist effective behavioral therapy that can result in significant improvements for many young children with autism. The most widely used behavioral intervention programs focus on developing communication, social, and cognitive skills. However, new research and anecdotal evidence suggest that some alternative therapeutic choices that include sports, exercise, and other physical activities can be a useful adjunct to traditional behavioral interventions, leading to improvement in symptoms, behaviors, and quality of life for individuals with autism.

Physical activity is important for children with and without disabilities alike as it promotes a healthy lifestyle, but can benefit individuals with autism in unique ways. In the U.S., 16% of children ages 2-19 are overweight*, whereas the prevalence of overweight among children with ASD is increased to 19% with an additional 36% at risk for being overweight.* This means that more than half of all children with ASD are either overweight or at risk. Being overweight can put children at increased risk for numerous health problems, both in childhood and as adults, including diabetes, cardiovascular disease, bone and joint problems, and even depression. The effects of these conditions may take an even greater toll on individuals with autism in combination with common autism symptoms and some highly co-morbid conditions such as gastrointestinal problems as well as depression and anxiety.

It has been suggested that decreased physical activity is the primary reason for the increased rate of overweight in children with autism, while unusual dietary patterns and the use of antipsychotic prescription drugs that can lead weight gain may also contribute. Participation in physical activity may be challenging for individuals with autism because of reasons such as limited motor functioning, low motivation, difficulty in planning, and difficulty in self-monitoring. Increased auditory, visual, and tactile stimuli may too prove challenging for affected individuals. Furthermore, physical activity involving social interaction such as team sports can present a difficult situation for someone with autism. However, if implemented appropriately, the addition of physical activity to an autism intervention program can help overcome many of these challenges and improve one’s overall quality of life.

It is not surprising to discover that physical activity has been shown to improve fitness levels and general motor function of individuals with autism. A study of a 9-month treadmill walking program on weight reduction in adolescents with severe autism revealed that the program significantly decreased body mass index among the participants. Additionally, as time progressed through the study, the frequency, duration, speed, and elevation of the treadmill walking all increased, indicating a general rise in exercise capacity and physical fitness. In a study of swimming training and water exercise among children with autism, ten weeks of hydrotherapy which included three, 60-minute sessions per week, resulted in significant increases in fitness levels indicated by changes in balance, speed, agility, strength, flexibility, and endurance.

Research has also demonstrated that increased aerobic exercise can significantly decrease the frequency of negative, self-stimulating behaviors that are common among individuals with autism, while not decreasing other positive behaviors. Behaviors such as body rocking, spinning, head-nodding, hand flapping, object-tapping, and light gazing, that have been shown to interfere with positive social behavior and learning, can thus be controlled by the use of exercise. Additionally, exercise can discourage aggressive and self-injurious behavior14 while improving attention span. In this study, aerobic exercise included 20 minutes of mildly strenuous jogging, however the aforementioned swimming and water exercise study also revealed a significant decrease in stereotypical behaviors in children with autism following a 60 minute session in the pool. One theory behind these findings is that the highly structured routines, or repetitive behaviors involved in running or swimming, may be similar to and/or distract from those self-stimulating, repetitive behaviors associated with autism.

Besides improving fitness, motor function, and behavior in individuals with autism, among the most important advantages of physical activity are the social implications of participating in sports and exercise. Physical activity can promote self-esteem, increase general levels of happiness, and can lead to positive social outcomes, all highly beneficial outcomes for individuals with autism. For those with autism who are able to participate in team sports, this presents an opportunity to develop social relationships among teammates and learn how to recognize the social cues required for successful performance on the field or court. However, individuals that prefer individual sports such as running or swimming that do not rely as heavily on social cues may still benefit from the positive attributes of physical activity while forming social relationships with coaches or trainers. In all cases, participating in sports provides individuals with autism with a role in society that may not have existed otherwise.

While there is evidence to support the role of physical activity in improving autism symptoms, behaviors and life-outcomes, sports and exercise should not replace proven behavioral interventions, but may be effective supplements to these therapies and potentially enhance the benefits. In fact, many of the key components of a successful physical activity program for individuals with autism mirror those that make up some of the most common treatments and behavioral interventions. For instance teaching new skills to children by breaking them down into smaller, organized tasks and then rewarding them for successful achievement is a core component of proven interventions such as ABA and TEACCH. This technique can be readily implemented in teaching physical education to children with autism.

There is increasing interest in establishing program guidelines for enhancing physical activity among individuals with autism. A major reason for this is because research suggests that autism prevalence is increasing and has reached an all-time high. This means that there will be an increasing number of children with autism in schools, physical education classes, and on sports teams. While different individuals with autism may face different challenges in participating in physical activity, these children should still be given the opportunity to experience the benefits of physical activity. And while the results may vary, based on all the available research and that which has been presented in this paper, the potential behavioral, physiological, emotional, and social benefits of physical activity for individuals with autism are numerous and should be further explored.

 

 *Statistics are subject to change from the time data were collected.

An unforgettable evening for the Manhattan SSG at “The Curious Incident of The Dog in the Night-time” show

January 26, 2015 3:00 pm Published by

The_Curious_Incident_of_the_Dog_in_the_Night-Time_(play)

On January 20th, 2015 the Manhattan Social Skills Group (SSG) were invited to the Barrymore Theater to meet with the cast of The Curious Incident of The Dog in the Night-Time. They were also presented with, and accepted, a donation on behalf of QSAC from Broadway Cares.  This was a very memorable experience for the students and they were so excited to be a part of this event. The SSG students previously provided technical assistance for the play in June 2014, where they had the opportunity to discuss life with autism.

When they arrived at the theater, they were ushered in by Benjamin Klein (associate director) and were allowed to sit in the theater before the audience members arrived. The SSG students were incredibly happy to be the only ones in the theater and witness, as one participant put it, “where the magic happens”. As they sat and waited for Broadway Cares to arrive, they chatted with Benjamin about what they were currently doing and events which had occurred since the last time Benjamin met with the them (in September, after viewing the show during the premiere week).

During this time, the cast members began to enter the theater to rehearse parts of the show which included stunts. When the boys saw Alexander Sharp (who plays Christopher) they immediately lit up and were thrilled to see him again (they also met with him after viewing the show during the premiere week in September). Alexander proceeded on to the stage with some of the other cast members, while Francesca Faridany (who plays Siobhan) approached the students to greet them and welcome them back to the theater. The students enjoyed a few minutes of watching the cast rehearse, and were in admiration when they saw Alexander perform some of the stunts, where he was lifted into the air. At this time, Broadway Cares arrived and the students were asked to step on stage with the cast members in order to accept their generous donation on behalf of QSAC. The students were delighted to feel part of the cast and to be able to set foot on stage. Francesca presented the donation and expressed how happy the entire cast was to have been able to fundraise on behalf of QSAC.

After photos were taken with the SSG students and cast members, Alexander approached the students to also catch up on what they had been doing since the last time he saw them (Alexander visited the SSG in June 2014).  The students did great discussing their lives and progress in the last few months. They also thanked everyone for the wonderful opportunity and generous donation which they accepted.

The students said their goodbyes and could not believe the experience they had just been a part of. Their smiles stretched from ear to ear and words cannot fully describe the happiness which emanated from each student.

Getting Ready For The Holidays

December 3, 2014 3:29 pm Published by
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As the holidays approach, we begin our preparations to spend time with those we love and partake in holiday events. The holiday season can be a stressful time of the year for everyone, but it can be especially challenging for an individual with an autism spectrum disorder. However, the following strategies and advanced planning can help to decrease the individual’s anxiety and enhance the holiday experience with the whole family.

  • Keep the individual’s behavioral and sensory profile in mind when planning holiday events. For example, how will they respond to specific traditions? How long can they tolerate being seated at the table? Will they be able to tolerate noise levels?
  • Prepare for the environment where the event will take place. If the event is outside of your home, consider designating a specific area for them to use in case they need some time away to decompress. Holiday events can be overwhelming and there may be too much sensory stimulation for the individual.
  • Prepare family members, especially children, of the individual’s needs and what they can do to help.
  • Prior to any holiday event, set aside some time to practice sitting at the table as it would be the day of the gathering. This can include adjusting the lighting of the room, playing music, etc. If the individual uses a schedule, begin to incorporate a picture or text of the holiday event into their schedule during practice time.
  • Expose the individual to holiday food before the family gathering, in order to see what they do and do not like. This allows the individual to become more comfortable with the food offered the day of the event. Provide reinforcement if they try any new foods (e.g., a piece of their favorite food for trying a new food).  Be prepared to bring or make foods which the individual enjoys so they can still participate at the table with the rest of the family in the event that their food repertoire is limited.
  • Set aside some activities that the individual likes if you know they will find the holiday event unpleasant, and/or if they have a short attention span. If the individual cannot tolerate loud noises, consider allowing them to wear headphones or build in breaks away from everything throughout the event.
  • When decorating your home for the holidays, consider doing so in gradual steps. Individuals with autism often thrive in predictable environments, and may not transition well when there are sudden changes in their routine and/or environment. Changing your home’s appearance in one day may be overwhelming to some. Give the individual an opportunity to help by allowing them to manipulate the decorations (i.e., as long as it is safe to do so) and help put them up. You can also give them an activity, such as stringing popcorn together to hang on the tree.
  • Think about the individual’s sensitivity to lights. You can take them to a holiday themed store prior to decorating your home and observe their reactions. If the lights seem unpleasant, think about alternative decorations.
  • If the individual is at risk for putting things in their mouth (e.g., pine needles) or breaking ornaments, consider alternatives such as an artificial tree, placing the tree out of reach, plastic ornaments, etc.
  • Keep in mind the individual’s fine motor skills and practice opening presents if necessary. Use pictures on the gifts instead of name tags.
  • If the individual comprehends the use of a calendar, use this as a tool to countdown the days until the event. This will offer greater predictability in preparation for the event.
  • Reinforce appropriate behaviors throughout the event.
  • If the individual uses an augmentative form of communication (e.g., iPad or PECS book), make sure they have it with them at all times. Reinforce spontaneous attempts to communicate.
  • Schedule an early dinner or eat before the event if necessary.
  • Assign activities and tasks that the individual can handle so they can participate in some way (e.g., setting the table, cleaning up, playing with other children if age appropriate)
  • Keep an eye on precursor behaviors that may lead the individual to engage in maladaptive behaviors and intervene accordingly. For example, ask them if they need a break or take them for a walk.

Most importantly have fun and enjoy the holidays!!!!!!!

Sexuality education for students with autism spectrum disorders

May 6, 2013 5:24 pm Published by

Individuals with autism spectrum disorders (ASD) demonstrate the same needs for relationships as most of us do. Unfortunately, a deficit in social skills can make relationship building a challenge for the individual with ASD. Social skills training does not often target the skills required for adult relationships. These topics may get placed on the back burner, and/or are not addressed at all. There exists a hidden curriculum within adult relationships, and one such topic includes sex education. Individuals with ASD experience the same bodily changes as their typically developing peers.  The topic of sex education is an uncomfortable topic for many families, but one that requires attention. Individuals with ASD usually require instruction and support in order to develop appropriate sexual behavior. We are currently faced with a lack of research concerning sex education within the ASD population.


The following is a two part blog written by Dr. Peter F. Gerhardt, Ph. D. for the Sage Colleges Achieve Ideas.  Dr. Gerhardt discusses the definition of sexuality, its history, as well as guidelines and considerations for the instruction of sexuality. Dr. Gerhardt is a leading expert in the field of autism and issues such as sex education.


By Dr. Peter F. Gerhardt, Ph. D.


Sexuality education for students with autism spectrum disorders, Part I

Although generally difficult to talk about in an open and honest manner, sex and sexuality are central to understanding ourselves. Comprehensive sexuality instruction focuses primarily on who the individual is as a sexual being and what that may mean in his or her life. Sexuality education involves instruction beyond just basic facts and knowledge and includes issues such as personal safety, individual values, gender-role identification, physical maturation and an understanding of the complex social dimension of sexuality and sexual behavior. Therefore, sexuality education should be considered an integral element of education for learners with an autism spectrum disorder (ASD), assuming that the goal is for them to be a safe, competent and confident adults.

Definition of sexuality
Human sexuality presents us with very complex subject. As defined by the World Health Organization (2004), sexuality is:

a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behavior, practices, roles and relationships. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors. (p. 2)

Similarly complex is the process of sexual development, which has been described as a “multidimensional process intimately liked to the basic human needs of being liked and accepted, displaying and receiving affection, feeling valued and attractive and sharing thoughts and feelings” (Murphy & Elias, 2006, p. 398). What both of these definitions boils down to is that sexuality is simply part of being human. Avoidance of any discussion of sexuality and/or sexuality instruction as it pertains to learners with ASD constitutes, in effect, a tacit denial of their humanity which, I think we all agree, is unacceptable.

History
For much of our history the very concept of individuals with any disability label being viewed as sexual beings was, by and large, anathema to the thinking of the time. Up until fairly recently, the predominant method of addressing sexuality in learners with developmental disabilities was denial and suppression (Watson, Venema, Molloy & Reich, 2002). Not surprisingly, neither approach was effective. Learners with ASD are, by definition, sexual beings, and to deny them that status is to deny them appropriate access to a critical part of their life, their status as an adult and their ability to be safe from harm.

Components of sexuality education
Sexuality education actually starts very early in life (differences between boys and girls; using the boys room or girls room, etc.) and continues well into adulthood (dating, marriage and parenting). Comprehensive sexuality education consists of instruction in three distinct (yet interrelated) content areas:

1) Basic facts/accurate information
2) Individual values and
3) Social relationships.

Effective sexuality education for learners with ASD can be complicated by the language/communication problems and social deficits associated with the disorder. And while sexual feelings and interest may be high, a primary information source available to neurotypical teens, (i.e., other teens), is often not available to learners on the spectrum (Volkmar & Wiesner, 2003). This often results in a situation where information is not taught in school, not addressed by family and not provided by friends resulting in little, if any, appropriate skill development. But make no mistake: teens will encounter information about sex as part of daily life, whether it’s from the media, overhearing locker room talk, watching the physical actions of couples at school or in the community or being the subject of insensitive, sexually-oriented teasing by others.

In light of the social challenges experienced by even the brightest learner with ASD, direct training and education about sexual issues needs to be provided, commensurate with each individual’s receptive and expressive abilities. This direct social skills instruction should be two-pronged: on one hand discussing the complexities of relationship building and on the other hand more concrete discrimination training as to who can, and who cannot, help in the bathroom, with menstrual care, at the doctor’s office, etc.

References
Murphy, N.A. & Elias, E.R. (2006).  Sexuality of children and adolescents with developmental disabilities. Pediatrics, 118 (1), 398-403.

Volkmar, F.R. & Wiesner, L.A. (2003). Healthcare for children on the autism spectrum: A guide to medical, nutritional and behavioral issues. Bethesda, MD: Woodbine House.

Watson, S., Venema, T., Molloy, W. & Reich, M. (2002). Sexual rights and individuals who have a developmental disability. In D. Griffiths, D. Richards, P. Fedoroff & S. Watson (Eds.). Ethical Dilemmas: Sexuality and Developmental Disability. Kingston, NY: NADD Press.

World Health Organization (2004). What constitutes sexual health?Progress in Reproductive Health Research, 64Accessed on line (8/15/06) at http://www.who.int/reproductive-health/hrp/progress/67.pdf

Sexuality education for students with autism spectrum disorders, Part II

In general, there are three basic goals for sexuality instruction – sharing basic facts/accurate information; developing individual values and teaching appropriate social relationship skills – and these should form the structure of any program for learners with autism spectrum disorders (ASD). Age and functioning level will affect how information is shared, but adults should use care not to restrict education because of their own preconceived notions about what these learners ‘need’ or ‘want.’ Other guidelines include:

·         Think ahead and be proactive. Waiting until something inappropriate happens is not an option. For example, training in appropriate menstrual care should start prior to onset of a young woman’s first period if it is to be most effective (and potentially, less challenging).

·         Start when children are young. Don’t make the mistake of waiting until the individual expresses interest in sex for education to begin. Teaching children about personal safety issues such as good touch/bad touch, consent and personal boundaries should start at an early age.

·         Be concrete and factual in presenting information, but also calm and supportive in all your interactions. References to the “birds and bees” as an introduction to sex or comparisons of the vulva to “petals on a flower” will, in all likelihood, be misunderstood. Much of the information is factual, based on biology. Use visuals whenever possible.

·         Break larger areas of information into smaller, more manageable blocks (task analyze). For some individuals discussing the biological underpinnings of pregnancy may be quite appropriate while for another a more simplistic explanation may be sufficient.

·         Always remember that sexual behavior is social behavior and, therefore, the social dimension of sexuality needs to be addressed when and wherever appropriate. “Hidden rules” regarding sexual behavior are pervasive. Masturbation, not often thought of as having a social component, does indeed, and it includes such social rules as 1) don’t masturbate in front of others, 2) your bedroom is the appropriate place for masturbation and 3) close the door to your bedroom if you want to masturbate, etc.

·         Keep in mind that sexuality education needs to be consistent, and the skills learned may need to be monitored to make certain they are retained. Once a young woman learns who can/cannot help her with menstrual care, the hope is that this skill is rarely practiced in real life. It may have to be revisited at different times across her life to assure maintenance of these very important skills.

Sexuality education with learners with ASD is often regarded as a “problem because it is not an issue, or is an issue because it is seen as a problem” (Koller, 2000, p. 126). In practice this means we generally ignore sexuality as it pertains to learners with ASD until it becomes a problem, at which point we generally regard it as big problem. A more appropriate and, ideally, more effective approach is to address sexuality as just another, albeit complex, instructional focus, the teaching of which allows learners to be safer, more independent and more integrated into their own communities, resulting in a more positive quality of life. As noted by Koller (2000), the question no longer can be if sexuality education should be provided, but rather how it will be offered.


References
Koller, R., (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18, (125-135).

Sobsey, D. (1994). Violence and Abuse in the Lives of Persons with Disabilities: The End of Silent Acceptance? Baltimore:  Paul H. Brookes Publishing.



Posted by Rocio E. Chavez, MA, MSEd, BCBA 

Research on Autism Treatment in Teens is Weak [Huffington Post]

September 24, 2012 4:30 pm Published by

The Huffington Post recently posted an article, “Evidence For Value Of Autism Treatment In Teens Is Weak, Report Finds”, which discusses the lack of research in the area of effective treatments for older students and adults with an autism spectrum disorder (ASD). It is suggested that in the next ten to twenty years, more funding will go into this research. Parents are advised to continue to advocate and push for more studies targeting treatments for adolescents and adults with an ASD.

A new government report confirms what many parents of teens with autism have long suspected: There is little scientific evidence backing up the current treatments used for autism spectrum disorders in older children and young adults.

“What we found was a dramatic lack of evidence for any kind of interventions,” said Julie Lounds Taylor, an assistant professor of pediatrics and special education at Vanderbilt University and lead author of the paper. 

“It was not a surprise,” Taylor continued. “There’s not very much research in general focused on adolescents and adults with autism.”

Click here to read the article in its entirety.

The Sage Colleges to Offer Degree Designed for Students with Autism

June 4, 2012 3:56 pm Published by

Recently, an undergraduate program has emerged which is specifically designed for students with an autism spectrum disorder and other special needs. The college and classroom experience can be a daunting one, for special needs and typically developing students alike; however, students with an ASD may not have the skills necessary to navigate the stress accompanied with obtaining a higher education, or the appropriate social skills to feel comfortable with campus life. The Achieve degree has emerged as a result of a growing need for a college program which addresses some of the hardships expressed by students with an ASD. For many students, the ability to handle college work is present, but the traditional classroom experience doesn’t work. The Achieve degree gives students with an ASD the opportunity to obtain a higher education within a program which is specifically designed to meet their needs.


Original article written by AD Midd
Students with autism spectrum disorders are usually very fortunate in their K-12 education. Throughout the past few decades, knowledge about the disorders and pressure from the private and public sector has made it possible for a child with autism to receive a high school education tailored to his or her own needs. Through special education research, the learning styles of autistic children have been unlocked and, in many mild cases of the disorder and even some severe cases, the true genius of these children has been allowed to shine.

However, higher education, with its tuition-based funding and non-mandatory status, has struggled to keep up with K-12 when it comes to offering autistic students the opportunity for a college degree. As a college educator, I have had only one student in all of my classes who could be called autistic (she has Asperger’s). Though this student was really a good writer and received a passing grade in my class, she wasn’t really able to engage in her education they way that she needed to. I had a class of 25 students that all needed “traditional” instruction and no training on how to integrate special educational needs at the classroom level (I am only certified as a special needs tutor, which is a different deck of cards). Never mind that there is no book on how to teach special needs students in the college classroom available; most teachers don’t even receive training on how to teach mainstream students for that matter.
But this is all about to change at one school in New York…

A Degree for Autistic Children

The Sage Colleges of Albany, New York are ranked among some of the best private educational institutions in the northeast. Among the schools that make up The Sage Colleges is the Esteves School of Education. It is there that the idea for a new program called Achieve was born in the mind of Dana R. Reinecke, PhD, BCBA-D. Dr. Reinecke is the director of Sage’s online master’s program in Applied Behavioral Analysis & Autism. Dr. Reinecke believed that the ability to perform at the college level was there for many students on the autism spectrum, what was missing was a program designed to meet their needs.
Achieve is a 4-year online Bachelor’s degree in Liberal Studies with an added emphasis in Computer Science applications designed to develop skills that will be in demand after graduation. Under Dr. Reinecke’s supervision, each course is tailored for the specific students in the program. Each educational path is designed to meet the needs of that student in a freeform approach to education that seeks to eliminate the normal “triggers” for autistic individuals (bright colors, flashing designs, unfamiliar faces, etc.).
Students in the Achieve program take classes in six, eight-week terms throughout each year. For each term in the first two years of study, students are required to take one 3-credit academic course and one 1-credit life skills course which emphasizes skills such as finance, independent living, interviewing, and online study skills specifically geared at further educating autistic students about the requirements of everyday life after school. Once the first two years are complete, students will take two 3-credit academic courses each term, leading to a 120-credit degree in four years. Achieve students go to school year round.
In addition, each student is assigned a faculty mentor who is trained in assisting autistic students. This mentor stays with the student throughout their four years, offering advice and counseling as needed as well as feedback designed to help the student learn how to learn at the college level and beyond.
The degree program is the first of its kind and admitted its first students this past January. Five students started the program, which is capped at 15 students per year. Students can begin study in either January or September. This ensures that each student has access to the support he or she needs throughout their time at The Sage Colleges.

ABOUT US

QSAC is a New York City and Long Island based nonprofit that supports children and adults with autism, together with their families, in achieving greater independence, realizing their future potential, and contributing to their communities in a meaningful way by offering person-centered services.

QSAC pursues this mission through direct services that provide a supportive and individualized setting for children and adults with autism to improve their communication, socialization, academic, and functional skills.