Peer-Teachers

Using Peers to Teach Children with Autism and Other Developmental Difficulties
written by Joe McCleery, Ph.D.

Autism is characterized by pervasive difficulties with social, communication, and language skills, as well as restricted interests and repetitive behaviors. Although assessments have been devised to identify the features of autism during adult-child interactions, the reality is that this developmental disorder is best understood in terms of the difficulties it creates for interacting with same-age peers. Therefore, it is somewhat surprising that many of the clinical and educational interventions for this population are implemented by adults, in isolation from peers. If our goal is for these individuals to interact and communicate successfully with their peers, then why do we primarily focus our efforts on teaching them to interact and communicate with adult therapists?

The likely origin of the adult-mediated nature of most autism interventions is apparent in the history of the development of effective interventions for this population. In the 1960s and 1970s, Ivar Lovaas developed methods for the application of the principles of applied behavior analysis to both reduce challenging behaviors and teach cognitive and language skills to children with autism (1,2). Prior to this period, many of these children were labeled “untreatable” and “unteachable” and placed in psychiatric or other institutional care settings (3). Lovaas’s approach was to use an adult-directed set of intensive adult-child interactions in an effort to eliminate behaviors that interfered with learning, and to teach the child the building blocks of speech/language and cognitive/academic skills. The ultimate aim of Lovaas’s approach at the time was to reduce or remove the skill and other blockades to successful academic and interpersonal inclusion, through early intensive adult-mediated intervention.

In principle, the use of peers as opposed to adults to teach social, communication, and other skills should ultimately serve several needs and purposes. First, direct teaching with peers eliminates or reduces the need to transfer skills learned with adults for use with peers. Second, effective use of available peers as teachers may ultimately reduce the burden on teaching staff. Third, use of peers may serve to increase the number of teaching/learning opportunities provided to the child with autism across the day. Finally, it is worth noting that evidence suggests that typically developing peers may benefit personally and academically from participation in active inclusion settings and activities (see e.g., 4).

What does the research say about use of peers in autism intervention?
In the late 1970s and early 1980s, several researchers began to explore the use of peers as a direct means for improving social and communication skills in learners with autism. To date, there are dozens of peer-reviewed publications on this topic, although the majority of these studies have involved only two or three children (see 5,6 for reviews). For example, Pierce and Schreibman (1995) taught two 10-year-old typically developing children to serve as peer therapists, teaching social and language skills to two 10-year-old children with autism who had verbal abilities of approximately 3 years of age. To do so, the researchers engaged in didactic instruction with the peer teacher across four 30-minute sessions, followed by one month of providing direct feedback to the peer during daily 10-minute play sessions with the child with autism (7). The peer-mediated intervention led both of the children with autism to engage in more social initiations and to increase their language production during future interactive peer play sessions (see also 8).

In one of the largest and most well controlled studies conducted on peer-mediated intervention for children with autism to date, Walton and Ingersoll (2012) taught six typically developing children to engage in Reciprocal Imitation Training with their siblings with autism. The children with autism were 2 to 5 years of age, and the siblings were 8 to 13 years of age. Through twenty 15- to 30-minute sessions across ten weeks, the researchers trained the siblings using the combination of 1) a child-friendly mini-manual, 2) adult-child role playing interactions, 3) adult modeling of intervention implementation with the child with autism, 4) direct feedback to the sibling on implementation of the intervention with the child with autism, and 5) poster reminders on the wall of the intervention room (9). Five different intervention skills were taught, consecutively, in phases. The findings of this study were mixed. Several of the siblings struggled to implement two or more of the five intervention component skills. Furthermore, not all of the children with autism exhibited gains in imitation behaviors. Because several previous studies have shown that adult-implementation of this same intervention leads to consistent improvements in imitation skills in very similar children with autism (10,11,12), these findings suggest that the lack of effects may have been due to failure of the siblings to consistently implement the intervention components. On the other hand, all of the children with autism did exhibit gains in joint engagement skills as a result of the intervention. This latter finding is consistent with previous study results, which suggest that increases in social and communicative initiations are one of the more robust effects of peer-mediated intervention for this population (6).

The study by Walton and Ingersoll highlights the critical importance of ensuring that expectations for the level of involvement required of the peer are appropriate and achievable, in order to obtain the full impact of peer-mediated intervention. The intensity of the protocols in both the Pierce and Schreibman (7,8) and Walton and Ingersoll (2012) studies further highlights the reasonably high level of preparation and training time commitment required to teach peers to implement complex, multi-component interventions effectively. For example, Walton and Ingersoll describe that teaching a child one intervention component skill may in some cases interfere with their ability to continue implementing a previously learned intervention skill in ways that are not observed when training adults (9). Despite these challenges, however, the level and nature of existing research evidence suggests that peer-mediated intervention is important and can be effective for teaching children with autism a variety of skills (5,6).

A good way to get started with using peers as teachers is to set up relatively simple lessons where the initial goal is to increase the rate of brief but successful peer social-communicative interactions. For example, several studies have been conducted and shown that giving a peer of a PECS user desired items and re-directing the PECS user’s spontaneous requests to adults to the peer “with the goods” leads to increased rates of peer-directed communications (13,14,15,16). In this instance, the peer’s role as “teacher” is reduced to what will eventually become a normal communicative interaction between the two students. Specifically, the peer is taught to hold desired items, accept picture exchange based communications, and then provide the item requested by the student. This type of interaction can also be made part of regular school-day activities. For example, the teacher can assign a child, or rotate children, playing the role of “Snack Captain” or “Toy Captain,” whereby the student is in charge of distributing items following direct communications/requests from other students.

Recommendations for clinical practice
Research evidence suggests that peer-mediated intervention can support children with autism and related developmental difficulties in learning to use critical social, communication, and other skills. Research also highlights some challenges to using peers as teachers. For example, the need to carefully consider and identify intervention skills that peers can implement properly, and to take steps to ensure that the peer implements those teaching skills consistently. Despite a number of publications on this topic, the field of research and development on peer-mediated intervention is still in its relative infancy. Here, I provide a number of practical guidelines and suggestions for the use of peer-mediated interventions given the challenges of real-world contexts and our current understanding based on research.

Guidance and Suggestions for Using Peer-Mediated Intervention:
– Start with a peer-teaching project that is relatively small and simple for all involved
– Select an initial lesson that fits well within your own expertise and comfort zone
– Define in advance the specific behavioral skills you want to increase in your learner
– Define in advance the specific behavioral skills required of the peer during teaching
– Identify and recruit the best peer (skills, characteristics, willingness, tolerance, patience)
– Consider siblings as peer teachers because research suggests they may be more effective
– Inform parents of peer teacher of the level and nature of their child’s time commitment
– Inform parents of peer teacher about benefits of participation and assurances of safety
– Set aside sufficient time for planning the lesson/activity and training the peer
– Incorporate direct feedback on the child’s teaching with the learner into the training
– Incorporate measures of fidelity/accuracy of implementation by peer, for troubleshooting
– Plan in order to ensure the safety and comfort of both the peer teacher and the learner
– Give the peer specific positive feedback on skills as well as generic praise for participation
– Develop a plan for dealing with various errors that may be made by the peer teacher
– Build confidence and competence via increasing skills and complexity of teaching over time

With realistic goals, advance planning, and stepwise progress, you can make meaningful progress improving core communication and social interaction skills for your students and peer teachers!

References
1. Edelson, S. M., Taubman, M. T., & Lovaas, O. I. (1983). Some social contexts of self-destructive behavior. Journal of Abnormal Child Psychology, 11(2), 299-311.

2. Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

3. Henninger, N. A., Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: a historical perspective. Autism, 17(1), 103-116.

4. Harris, S. L., Handleman, J. S., Kristoff, B., Bass, L., & Gordon, R. (1990). Changes in language development among autistic and peer children in segregated and integrated preschool settings. Journal of Autism and Developmental Disorders, 20(1), 21-31.

5. Smith, T. (2012). Evolution of research on interventions for individuals with autism spectrum disorder: implications for behavior analysts. The Behavior Analyst, 35, 101-113.

6. Zhang, J., & Wheeler, J. J. (2011). A meta-analysis of peer-mediated interventions for young children with autism spectrum disorders. Education and Training in Autism and Developmental Disabilities, 46(1), 62-77.

7. Pierce, K., & Schreibman, L. (1995). Increasing complex social behaviors in children with autism: effects of peer-implemented pivotal response training. Journal of Applied Behavior Analysis, 28, 285-295.

8. Pierce, K., & Schreibman, L. (1997). Multiple peer use of pivotal response training to increase social behaviors of classmates with autism: results from trained and untrained peers. Journal of Applied Behavior Analysis, 30, 157-160.

9. Walton, K. M., & Ingersoll, B. R. (2012). Evaluation of a sibling-mediated imitation intervention for young children with autism. Journal of Positive Behavioral Intervention 14(4), 241-253.

10. Ingersoll, B. (2010). Brief Report: Pilot randomized controlled trial of Reciprocal Imitation Training for teaching elicited and spontaneous imitation to children with autism. Journal of Autism and Developmental Disorders, 40, 1154-1160.

11. Ingersoll, B., Lewis, E., & Kroman, E. (2007). Teaching the imitation and spontaneous use of descriptive gestures to young children with autism using a naturalistic behavioral intervention. Journal of Autism and Developmental Disorders, 37, 1446-1456.

12. Ingersoll, B. & Schreibman, L. (2006). Teaching reciprocal imitation skills to young children with autism using a naturalistic behavioral approach: Effects on language, pretend play, and joint attention. Journal of Autism and Developmental Disorders, 36, 487-505.

13. Garfinkle, A. N., & Schwartz, I. S. (1994). PECS with peers: Increasing social interaction in an integrated preschool. Paper presented at the meeting of The Association for the Severely Handicapped, San Francisco, CA, November.

14. Kodak, T., Paden, A., & Dickes, N. (2012). Training and Generalization of Peer-Directed Mands With Non-vocal Children With Autism. The Analysis of Verbal Behavior, 28, 119–124.

15. Paden, A. R., Kodak, T, Fisher, W. W., Gawley-Bullington, E. M., & Bouxsein, K. J. (2012). Teaching children with autism to engage in peer-directed mands using a picture exchange communication system. Journal of Applied Behavior Analysis, 45(2), 425–429.

16. Cannella-Malone, H. I., Fant, J. L., & Tullis, C. A. (2010). Using the Picture Exchange Communication System to Increase the social communication of two individuals with severe developmental disabilities. Journal of Developmental and Physical Disabilities, 22, 149–163.

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Genetic Syndromes

 

Rare Genetic Syndromes and Autism Education and Practice

Written by Joe McCleery, PhD

Since Autism was first identified by Leo Kanner in 1943 (1), extensive research has been conducted and shown that autism is caused by a complex set of genetic and environmental factors (2). For example, the results of studies comparing co-occurrence of autism in identical twins, who share nearly 100% of their genes, compared with non-identical twins, who share approximately 50% of their genes, suggest that genetics account for approximately 45% to 65% of the variability in causing autism spectrum disorders (2,3).

In regards to specific genetic factors, evidence to date suggests that the genetic contribution to causing autism is primarily due to normal variation in a relatively large number of normal genes (i.e., “Common Variation” see 2,4,5). For environmental factors, examples that evidence suggests may increase risk for autism include the mother taking the epilepsy medication valproic acid during pregnancy (6), birth complications (7), and heavy traffic-related air pollution (8), among others. However, for the vast majority of both the genetic and environmental risk factors that have been identified to date, each individual factor contributes only a very small amount to the individual developing autism. In addition, a large number of the genetic and environmental factors that contribute to causing autism have yet to be identified (see 2,4). Finally, it is generally assumed that a large number of genetic and environmental factors interact with one another to cause autism (see also 9,10,11).

 

Genetic Syndromes with Characteristics of Autism

In addition to the complex genetic contributions to causing “regular” autism, there are also genetically-mediated syndromes in which a diagnosis of autism is especially common. These include Fragile X Syndrome, Rett Syndrome, Dup15q Syndrome, Tuberous Sclerosis Complex, Cornelia de Lange Syndrome, and even Down Syndrome, among others. For some of these conditions, rates of autism have been estimated to be over 50%, compared with the approximately 1% rate of Autism Spectrum Disorders in the general population (Table 1). Each of these genetic syndromes has its own unique genetic cause that brings with it a set of physical and/or behavioral characteristics that occur whether or not autism is also present (Table 1). The co-occurrence of the genetic syndrome and autism often leads to a number of additional complications and challenges for both the individual and the clinician/educator.

Although the majority of the genetic syndromes associated with autism are individually rare, collectively these syndromes are relatively common. For example, it has been estimated that the genetic mutation that causes Fragile X Syndrome may be present in approximately 2% to 8% of autism cases (12) and that the genetic duplication that causes Dup15q Syndrome is present in approximately 1% to 3% of autism cases (13). Furthermore, many of the genetic syndromes in which autism is common are associated with moderate to severe intellectual disability (Table 1). This means that many of these genetic syndromes will be much more common in the sub-group of individuals with autism who are experiencing moderate to severe intellectual / learning disabilities. As a result, many of these children will be placed in autism specialist or mixed disability classrooms, often without recognition of the fact that the child has a unique genetic syndrome.

 

The Value of Identifying Genetic Syndromes

The first characteristics that many will notice about individuals with a number of these genetic syndromes are differences in their outward physical appearance. For example, individuals with Fragile X Syndrome have longer faces and larger ears than others. Individuals with Tuberous Sclerosis Complex exhibit characteristic rash patterns on their skin. And, individuals with Cornelia de Lange Syndrome present with a number of characteristic facial features and are also sometimes missing portions of limbs (Table 1). In fact, a number of these genetic conditions are commonly diagnosed in the medical community based solely on the presence and nature of apparent physical and behavioral features. Alternatively, for some of these conditions, such as Dup15q syndrome, there are no physical features that are consistently present.

There are compelling clinical/educational and community support related factors that warrant consideration of whether or not an individual may have one of these genetic syndromes. Among the most compelling reasons to consider and identify the presence of a genetic syndrome are characteristic behavioral patterns and developmental trajectories (Table 1). For example, individuals with Rett Syndrome engage in “hand wringing” at the midline that becomes increasingly persistent and increasingly resistant to behavioral modification over time. Therefore, clinical/educational intervention plans may ultimately need to be focused on working around this difficulty as the child ages. For another example, individuals with Tuberous Sclerosis Complex often experience pain from tubers/tumors in their internal organs that are unobservable. This pain is highly likely to contribute to causing and exacerbating challenging behaviors. This information is critical for both assessing and treating the sources of challenging behaviors, which are common in this population. Other examples include particular deficits in play skills in individuals with Tuberous Sclerosis Complex, hyperactivity in individuals with Dup15q Syndrome, social impulsivity and emotional reactivity in individuals with Klinefelter Syndrome, body heat intolerance in individuals with Phelan McDermid Syndrome, and insatiable appetite in individuals with Prader Willi Syndrome.

In addition to improved understanding of the intervention and other needs of the individual, identification of a genetic syndrome can also provide invaluable informational and social support for the family. For example, there are informational and family/peer support organizations for the majority of known genetic syndromes (see below). Many of these organizations are well-established and professionally run, provide pathways to clinically-relevant information and supports, and hold annual conferences. Several such organizations also directly or indirectly support international communication and cooperation among families and/or clinicians serving the population.

 

Implications for Clinical/Educational Practice

As described above, there are a number of genetic syndromes in which a diagnosis of an autism spectrum disorder is especially common. While these syndromes are individually rare, collectively they make up a notable percentage of individuals who are receiving services based upon a diagnosis of an autism spectrum or related disorder. Furthermore, individuals with some of these syndromes are significantly more likely to be represented in the sub-group of individuals with autism and other special needs who are experiencing moderate to severe intellectual disabilities.

Although individuals with genetic syndromes are often placed in schools/classrooms and clinics that provide autism specialist services, the autism symptoms and behavioral patterns and needs of these individuals often differ from individuals with “regular” autism in important ways. Individuals with genetic syndromes also often experience additional physical and/or behavioral challenges that are related to their genetic condition. In many cases, being aware that the individual has a particular genetic syndrome will be very valuable information for both clinicians and educators. Alongside the value for direct support for the individual, the identification of a genetic syndrome can also lead to life-changing informational and peer support for family members.

 

Written by Joe McCleery

 

Table 1. Characteristics of several genetically-mediated syndromes related to Autism Spectrum Disorders.

Genetic Syndrome Estimated Prevalence Autism Spectrum Diagnosis Intellectual Disability Physical Characteristics Behavioral Characteristics
Fragile X Syndrome 1 in 4,000 males;1 in 8,000 females Estimated 20% – 50% ASD in males; 1% – 3% ASD in females. ASD diagnosis more common in those with moderate to severe intellectual disability. Estimated 2% to 8% of boys with autism have Fragile X Syndrome. Mild to profound (females experience only mild intellectual disability in approximately 75% of cases) Long face, large protruding ears, low muscle tone. Pale skin is also common. Pervasive shyness, reduced eye contact (but warm up somewhat over time), reduced social reciprocity. Autism and social withdrawal symptoms may increase with age. Hyperactivity and impulsivity are common.
Rett Syndrome 1 in 10,000 to 1 in 22,000 (almost exclusively females) Autism-like behaviors are present in most; however, the social symptoms of autism are often only temporary in this population.   Approximately 18% of children with Rett Syndrome are diagnosed with autism before they are properly identified as having Rett Syndrome. Nearly all will have intellectual disability (commonly severe) that is associated with progressive stages of motor and cognitive deterioration. Slowed head growth, slowed physical growth, scoliosis, and irregular heartbeat are common. Lifespan may be shortened to 40 to 50 years of age. Regression of motor and cognitive skills after a period of approximately 6 to 18 months of relatively normal early development, loss of muscle tone, difficulty feeding, jerkiness in limb movements, hand “wringing” at the midline, loss of purposeful use of hands, loss of speech. Seizures, loss of ability to walk, anxiety, sleep problems, and breathing difficulties are also common. Interest in socialization often increases with age following the initial periods of regression.
Dup15q Syndrome 1 in 4,000 Estimated 85% ASD. ASD is equally common in boys and girls with Dup15q Syndrome. Estimated approximately 1% to 3% of ASD cases have 15q duplications. Most individuals experience early developmental and language delays. Intellectual and adaptive functioning difficulties persist in many individuals. Physical characteristics are common but non-specific. Flat nasal bridge (“button” nose), full cheeks, long philtrum, skin folds at corner of eyes, deep set eyes, low-set and/or posteriorly rotated ears, physical growth delays, and low muscle tone are common. Most individuals experience early developmental and language delays. Intellectual and adaptive functioning difficulties persist in many individuals. Gross and fine motor delays are common. Seizure disorders and abnormal EEG are common. Hyperactivity and sleep problems are common.
Tuberous Sclerosis Complex 1 in 6,000 to 1 in 11,400 35% – 45% ASD. ASD is more common in individuals with intellectual disability. 45% intellectual disability (30% profound intellectual disability) Benign tumors/tubers throughout organs, including the brain in many cases. Epilepsy.   Permanent skin rashes, skin tumors, and/or skin patches. Retinal lesions are common. Aggression, self-injury, pain and discomfort (from growths), headaches, photophobia. Global deficit in play skills is common, even in the absence of autism.
Cornelia de Lange Syndrome 1 in 10,000 to 1 in 40,000 Estimated 32% – 67% ASD Mild to severe intellectual disability. Short stature, below average weight, and small head size are common. Short upturned nose, thin downturned lips, low-set ears, long eyelashes, thin eyebrows that meet in the middle. Upper limb abnormalities, including missing fingers, hands, or forearms, are common.   Gastroesophageal reflux is very common. Self-injury, compulsive behaviors, anxiety, obsessive-compulsive tendencies, attention deficits, hyperactivity, and impulsivity are common.
Cri du Chat Syndrome 1 in 50,000 Estimated 40% ASD Severe to profound intellectual disability Small head size, low birth weight, low muscle tone, widely set eyes, low set ears, small jaw, rounded face. Increased risk for heart defects. Frequent high-pitched cry. Verbal behavior is typically more affected than nonverbal behavior.   Expressive language is typically more affected than receptive language. Hyperactivity, impulsivity, self-injurious behavior, aggressive behavior, stereotyped behavior, unusual attachment to objects, and sensory sensitivities are common.
Angelman Syndrome 1 in 12,000 to 1 in 20,000 Estimated 40% to 80% ASD. ASD associated with profound intellectual disability. Severe to profound intellectual disability. Unusually fair skin and light-colored hair are common.   Curvature of the spine is common.   Adults often have distinctive facial features. Typically have a happy, excitable demeanor, with frequent smiling, laughter, and hand flapping. Most experience reduced mobility, impaired communication skills, and seizures. Absence, or near absence, of speech is common.Hyperactivity, impulsivity, a short attention span, and sleep difficulties are common. Fascination with water is common. Even when diagnosed with ASD, as a group individuals with Angelman Syndrome are not as impaired on social smiling, directing facial expressions to others, shared enjoyment in interaction, response to their name being called, or unusual interests and repetitive behavior as other individuals with ASD.
Down Syndrome 1 in 1,000 Estimated 6% – 39% ASD. ASD is more common in those with a greater degree of intellectual disability. Approximately 80% experience moderate to profound intellectual disability. Flattened face, flattened nose bridge, almond-shaped eyes, short neck, small ears, protruding tongue, short stature.   Most individuals have low muscle tone.   Approximately 50% have heart defects.   Gastroesophagel reflux is common.   Increased risk of hearing and vision problems. Increased risk for sleep apnea. Increased risk of Alzheimer’s Disease. Delays in motor development are common. Attention difficulties, obsessive/compulsive behavior, stubbornness, and tantrums are common. Difficulties in emotion perception and theory of mind are common.
CHARGE Syndrome 1 in 8,500 to 1 in 12,000 Estimated 15% – 50% ASD. Approximately 70% experience mild to severe intellectual disability. Most have abnormalities in the structure of one or both eyes. Most have heart malformations. Many have upper airway abnormalities, with narrow or blocked nasal passages common.   Cranial nerve abnormalities, facial paralysis, and hearing loss are common. Retarded growth and development, genital abnormalities, and ear abnormalities are common.   Square-shaped face, prominent forehead, prominent nasal bridge, flat midface, and facial asymmetry are common.   Hand and limb anomalies are common. Pervasive communication and language difficulties are common. Swallowing problems, facial paralysis, and diminished sense of smell are common.
Prader-Willi Syndrome 1 in 10,000 to 1 in 25,000 Estimated 20% to 25% ASD Borderline to moderate intellectual disability Prominent nasal bridge, strabismus (eyes not properly aligned), small hands and feet with tapering of fingers, excess fat, high and narrow forehead, downturned mouth, thin upper lip, almond-shaped eyes, low muscle tone, short stature is common. Insatiable appetite (and obesity), compulsive behaviors (especially skin picking), anxiety. Low activity levels are common.
Klinefelter Syndrome 1 in 50,000 males(Note: a variant of the syndrome that is not associated with autism or other learning difficulties occurs in 1 in 500 to 1 in 1,000 males)  Estimated 11% ASD Intellectual functioning is commonly in the normal or below average range. However, most individuals require some level of special education or other support. Shortage of testosterone, delayed or incomplete puberty, breast enlargement, reduced facial and body hair, infertility, and genital abnormalities. Shyness, social withdrawal, social anxiety, difficulties in peer relationships, social impulsivity, and communication difficulties are common. Decreased ability to identify emotions in faces and voices, and increased levels of emotional stress and reactivity are common. Increased arousal in response to emotional stimuli and avoidance of looking to the eyes during emotionally charged events.
Phelan McDermid Syndrome Unknown, but extremely rare.   Equally common in females and males. Possibly as high as 84% ASD Moderate to profound intellectual disability in 85% of individuals Large fleshy hands, bulbous nose, long eyelashes, ear anomalies, and thin flaky toenails are common. Absent to severely delayed speech.   Overheating is common due to decreased perspiration. Increased tolerance for pain and low muscle tone are common. Ear and respiratory infections are common. Gastroesophegal problems are common. Frequent mouthing and chewing of objects is common. Sleep disorders and seizure activity are common. Toilet training is commonly particularly difficult.

 

Further Information and Support: 

Fragile X Syndrome:  http://www.fragilex.org

Rett Syndrome:  https://www.rettsyndrome.org

Dup15q Syndrome:  http://www.dup15q.org

Tuberous Sclerosis Complex:  http://www.tsalliance.org

 Cornelia de Lange Syndrome:  http://www.cdlsusa.org

Cri du Chat Syndrome:  http://www.criduchat.org

 Angleman Syndrome:  http://www.angelman.org

 Down Syndrome:  http://www.ndss.org

 CHARGE Syndrome:  http://www.chargesyndrome.org

 Prader-Willi Syndrome:  http://www.pwsausa.org

 Klinefelter Syndrome:  http://www.klinefelter.org.uk

 Phelan McDermid Syndrome:  http://22q13.org/j15

 

References

1. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 217-250.

2. Stein, J. L., Parikshak, N. N., & Geschwind, D. H. (2013). Rare inherited variation in autism: beginning to see the forest and a few trees. Neuron, 77(2), 209-211.

3. Sandin, S., Lichtenstein, P., Kuja-Halkola, R., Larsson, H., Hultman, C. M., & Reichenberg, A. (2014). The familial risk of autism. Journal of the American Medical Association, 311(17), 1770-1777.

4. Stein, J., & Geschwind, D. Guest blog: Slicing the genetic pie. Simons Foundation Autism Research Initiative, April 5, 2013.

5. Insel, T. Director’s blog: The new genetics of autism – why environment matters. National Institutes of Mental Health, April 4, 2012.

6. Christensen, J., Gronberg, T. K., Sorensen, M. J., Schendel, D., Parner, E. T., Pedersen, L. H., & Vestergaard, M. (2013). Prenatal valproate exposure and risk for autism spectrum disorders and childhood autism. Journal of the American Medical Association, 309(16), 1696 – 1703.

7. Schieve, L. A., Tian, L. H., Baio, J., Rankin, K., Rosenberg, D., Wiggins, L., et al. (2014). Population attributable fractions for three perinatal risk factors for autism spectrum disorders, 2002 and 2008 autism and developmental disabilities monitoring network. Annals of Epidemiology, 24(4), 260 – 266.

8. Volk, H. E., Lurmann, F., Penfold, B., Hertz-Picciotto, I., & McConnell, R. Traffic related air pollution, particulate matter, and autism. Journal of the American Medical Association Psychiatry, 70(1), 71 – 77.

9. Hughes, V. Father’s age dictates rate of new mutations. Simons Foundation for Autism Research. August 23, 2012.

10. Kong, A., Frigge, M. L., Masson, G., Besenbacher, S., Sulem, P., et al. (2012). Rate of de novo mutations and the importance of father’s age to disease risk. Nature, 488(7412), 471 – 475.

11. Handel., A. E., & Ramagopalan, S. (2010). Is Lamarckian evolution relevant to medicine? BMC Medical Genetics, 11, 73 – 75.

12. Hagerman, R. J., & Harris, S. W. (2008). Autism profiles of males with Fragile X Syndrome. American Journal of Mental Retardation, 113(6), 427 – 438.

13. Moreno-De-Luca, D., Sanders, S. J., Willsey, A. J., Mulle, J. G., Lowe, J. K., Geschwind, D. H., State, M. W., Martin, C. L., & Ledbetter, D. H. (2013). Using large clinical data sets to infer pathogenicity for rare copy number variants in autism cohorts. Molecular Psychiatry, 18, 1090 – 1095.

 

 

 

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PECS Toddler Study

Federally Funded Study Reports that Intervention with PECS Leads to Rapid Gains in Speech and Communication Skills in Toddlers with Autism

The results of a high quality, well-controlled, federally funded study have shown that less than six months of intervention based on the Picture Exchange Communication System Manual, 2nd Edition (PECS; 1), results in rapid gains in picture-based communication skills in most nonverbal or minimally verbal toddlers with autism.  In addition, as a group, the children who received PECS training experienced gains in speech production that were equivalent to children who received another well-established intervention, Pivotal Response Training (PRT), that is specifically designed to increase speech skills.

A study just published in the May, 2014, issue of the Journal of Autism and Developmental Disorders reports the results of an early intervention research study, funded by the National Institute of Mental Health (NIMH) at a cost of over one million dollars.  The study was conducted by researchers at the University of California, and was designed to examine and compare the effects of two interventions on speech and communication skills in toddlers diagnosed with autism spectrum disorders:  The Picture Exchange Communication System and Pivotal Response Training.  The autism intervention researchers who conducted this study have been funded by the NIMH to develop and improve the effectiveness of both PRT and parent training intervention methods for children with autism for over 25 years.

 

Speech Gains

In this study, the researchers identified thirty-nine 18-month-old to 47-month-old children with a diagnosis of an autism spectrum disorder who were each speaking fewer than 10 words.  These 39 children were then randomly assigned to receive either PECS or PRT intervention.  Both interventions were administered through a combination of parent training and home-based intervention that was implemented by trained therapists, for a total of approximately 11 hours per week.  The results showed that children in both the PECS and PRT intervention groups made significant gains in spoken language skills during the intervention period, with no differences in spoken language learning outcomes in the two groups of children (2).  Overall, 78% of the children in the study exited the intervention with more than 10 functional spoken words, and the average number of spoken words gained during the six month intervention period was 83 for the children who received PECS and 71 for the children who received PRT (2).  Because extensive previous research has shown that PRT is effective for improving speech skills in children with autism, the results of this new study provide evidence that PECS intervention results in speech gains that are similar to those from other established speech-based interventions for this population.

 

Communication Gains

While 78% of the children across both intervention types in the study spoke more than 10 functional words by the end of the intervention period, and the average child gained approximately 75 words during the intervention, the remaining 22% of the children in the study did not make such gains in their speech skills.  However, in the group of children who received PECS training, all but one (95%) learned to communicate using pictures during the six month intervention period.  These differences in communication outcomes in the children who did not learn to speak in the two groups during the intervention period may help explain why parents’ overall satisfaction ratings were equivalent for the PECS and PRT intervention groups despite the fact that these same parents rated PECS as somewhat more difficult to implement.

 

Implications for Clinical Practice

Overall, the results of this study provide much-needed research evidence for the effectiveness of early behavioral intervention procedures for improving speech and communication skills in toddlers with autism spectrum disorders.  To date, only a handful of studies of this scale and quality have been conducted on intervention for toddlers with autism spectrum disorders.  While previous experimental research had established both PECS and PRT as evidence-based intervention practices for school-aged children with autism (3, 4), the results of this new study provide direct evidence that toddlers on the autism spectrum also make notable gains in speech and communication skills from intervention with PECS and PRT.  In addition, unlike many previous autism intervention studies, the interventions were implemented directly in the homes of the participating families in this study, which provides evidence that PECS and PRT are both practical and effective for use in real-world settings.

For purposes of experimental control, the researchers who conducted this study separated PECS and PRT interventions from one another, so that the effects of these two established interventions could be compared with one another.  However, the developers of PECS have consistently indicated that children receiving PECS should also receive separate, speech-based intervention services as part of a larger intervention program.  The gains observed in the current study were the result of an average of only 11 hours PECS or PRT per week of intervention, whereas previous reports describe that interventions of similar intensity have been administered to toddlers with autism for as many as 20 per week (5).  Therefore, it would be reasonable to implement PECS as the core communication and speech intervention for nonverbal and minimally verbal children, for 11 hours per week, in combination with PRT and other interventions for up to 9 hours per week.  Then, as the child’s speech skills develop and improve, the child can be transitioned to a primarily speech-based communication with PRT as the primary speech/communication intervention.  In this way, the initial use of PECS promotes rapid developments in both picture-based communication and speech skills, which are then continued and expanded through implementation of PRT in accordance with the child’s progress in speech development.

 

References

  1. Frost, L., & Bondy, A.(2002) The Picture Exchange Communication System Training Manual, 2nd Edition. Pyramid Educational Consultants, Inc.
  2. Schreibman, L., & Stahmer, A. C. (2014).  A Randomized Trial Comparison of the Effects of Verbal and Pictorial Naturalistic Communication Strategies on Spoken Language for Young Children with Autism.  Journal of Autism and Developmental Disorders, 44(5), 1244-51.
  3. Maglione M. A., Gans D., Das L., Timbie J., Kasari C.; Technical Expert Panel; HRSA Autism Intervention Research – Behavioral (AIR-B) Network.  (2012).  Nonmedical interventions for children with ASD:  recommended guidelines and further research needs.  Pediatrics, 130, Suppl 2, S169-78.
  4. Odom, S. L., Collett-Kingenberg, L., Rogers, S. J., & Hatton, D. D.  (2010). Evidence-Based Practices in Interventions for Children and Youth with Autism Spectrum Disorders.  Preventing School Failure: Alternative Education for Children and Youth, 54(4), 275-282.
  5. Boyd, B. A., Odom, S. L., Humphreys, B. P., & Sam, A. M.  (2010).  Infants and Toddlers With Autism Spectrum Disorder: Early Identification and Early Intervention.  Journal of Early Intervention, 32(2), 75-98.

 

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