Nature of Autism Final Synthesis

Lee Ann Melchor

EEX 6246 Nature of Autism

University of Central Florida

April 2012

 

The Nature of Autism

Autism is a developmental, neurological disorder. Primarily, individuals with autism display abnormal patterns in social interactions, communication, and often eccentric, repetitive behavior. Autism is a spectrum disorder that encompasses an umbrella of disorders including Asperger's Disorder, Rhett's Disorder, PDD-NOS, Autism and CDD. The number of children with autism in the United States continues to rise, according to a new statistics released by the Centers for Disease Control and Prevention. The latest data estimate that 1 in 88 children in the U.S. has some form of autism spectrum disorder. This estimate is an increase of 78% compared to statistics released a decade ago. Boys are 5 times more likely to develop autism than girls. However, despite its prevalence, there is no known cure for ASD and there continues to be mixed information regarding the etiology of autism.

The Field of Autism / Effective Practices

These staggering numbers combined with the lack of identifiable cure or cause of autism, leaves many parents vulnerable to miracle cures and ineffective and unproven treatment options. While there is no documented cure for autism, autism can be managed effectively using a combination of behavioral, education and biological interventions. In reviewing treatment options, autism and school professionals should consider the following questions: (a) Are these treatment programs effective? (b) What are the common elements of these programs? (c) What steps need to be taken to improve treatment outcome research for children with autism? (d) What implications do the answers to the above 3 questions have for school psychologists? (Gresham, 2000). Two primary distinctions are made when evaluating a treatment option: the efficacy of the treatment or the reduction in the autism symptoms while increasing functional skills and effectiveness across the settings in which the treatment options will be used.

In 1996, Bristol and his colleagues released a report to the National Institute of Health (NIH) in which he raised issue with the methods and the statistical data in autism interventions that must be addressed in order to gain a better understanding of what autism interventions work. These findings include:

• Research studies should use experimental designs and treatment comparison models.
• Use of randomly assigned children to treatment conditions.
• Treatment should be conducted across a wide variety of natural and laboratory settings in which a wide variety of behaviors and skills are assessed.
• Outside evaluators who are not vested in outcomes of research should not be used.
• Procedural integrity of the interventions should be consistently assessed.
• Longevity studies should be used to evaluate the long term effects of treatment over time.

The Clinical Child and Pediatric Psychology / Division 12 of the American Psychological Association (APA), formed a task force to evaluate the efficacy and effectiveness of research on childhood five childhood disorders, including autism. The goals of the task force include identifying what treatments are most effective for individuals with autism and under what circumstances. 
 

In evaluating several of the leading programs for children with autism, including UCLA’s Young Autism Project (YAP), Project TEACCH, LEAP, ABA Therapy and the Denver Health Science Program, several key flaws were found. In the YAP program, which relies primarily on discrete trial training, the research studies utilized to evaluate YAP’s effectiveness, failed to randomly assign children to the research groups. Further research studies, failed to replicate the exact outcomes in later studies. Project TEACCH uses collaboration, sharing of information, as well as education programs for both the child and the parent. Project TEACCH uses a framework that combines vocational, social skills, and living skills. Research studies have been completed on the effectiveness of TEACCH in the classroom, but not on the effectiveness of the interventions being used in the home setting. LEAP program is a federally funded model that was one of the first to utilize inclusive practices for young children with autism and their families. LEAP emphasizes the use of a home-school alliance to promote academic outcomes of children. There is little data to support that LEAP has more effective outcomes than other autism programs. ABA Therapy is considered one of the most effective interventions for children with autism as it focuses on the role of the child’s environment impact on the child’s behavior. 

This article, however, focused on two ABA programs: Rutgers University’s Douglas Developmental Center and Princeton’s Child Development Institute. This article criticized that the studies conducted at Rutgers failed to use a control group and a comparison group, thereby nullifying the validity of the data collected. Princeton’s study also had several flaws including failing to randomly assign children, neglecting to use a comparison group receiving another treatment, failing to identify the treatment program adequately and poorly defined outcomes.

It has become clear that the autism field is hampered by the lack of adequately proven interventions. The lack of documented proven interventions is centered around the lack of an established, uniform criteria for evaluating the effectiveness of treatment options in the field of autism. If professionals in the field cannot agree on an established method for evaluating programs, how can they determine the most effective intervention programs available? It is therefore, understandable why educators and parents of children with autism struggle to determine which treatment options and strategies are most effective for their child.

The Role of the Educator

Over the last decade, there has been little information available to the general public as to what works. This is greatly hampered by the lack of agreement between professionals and educators on how to best identify and effectively evaluate and measure effective practices. Under NCLB, an attempt has been made to identify programs that are scientifically based by research “that involves the application of rigorous, systematic and objective procedures to obtain reliable and valid knowledge relevant to education activities and programs” (NCLB, 2002). Shortly thereafter, the U.S. Department of Education awarded $18.5 million to the What Works Clearinghouse to assess and identify effective programs. 

Recently, a publication by NCLD provided a prime example of how teachers are continually working to improve student outcomes while working within state and federal frameworks and on limited resources.  There is stress placed on teachers to meet annual yearly goals, improve test scores and ensure students are meeting the requirements under NCLB in order for the districts to receive federal funding.  Many children with autism are educated in the general education classroom or in co-taught settings with self contained classrooms serving those with moderate to severe autism. 
 

General education teachers may find increasing numbers of children with autism in their classrooms. Teachers of exceptional students including those with autism are under increased pressure because exceptional students are required to achieve AYP at the same rate of their non-disabled peers, as well as being required to pass assessments at the same level as their non-disabled peers.  Not only must general education teachers ensure that this is achieved, but must be able to use reasonable accommodations and modifications to ensure students meet those goals.  
 

Many general education teachers have not been adequately trained to deal with the medical, physical, mental and other challenges of a special needs child.  Children with autism have unique educational needs that includes communication, social skills and behavioral interventions. There is a lot of stress on general education teachers to combine the special needs education into a general education setting, combining both disabled and non-disabled students, tailoring instructional strategies to meet each student’s individual needs, writing lesson plans, attending staff and parent meetings, administrative duties and other duties as required.  In addition, many programs and processes designed to assist students with special needs, such as the IEP process and RtI, require general education teachers to devote a large amount of time for data collection, research and documentation before the child can be referred for special education services or more intensive interventions.

Recently, there has been increased criticism of teachers of autistic children who have allowed their stresses of educating an autistic child to impair their judgment and actions in the classroom. Most notably, have been teachers and teaching assistants who have bullied and harassed children with autism by name calling, using inappropriate comments or displaying a lack of sensitivity for the child's disability. This clearly is a signal that some teachers are often inadequately trained for the rigorous and stressful demands of teaching a child with autism.

Educating a child with any disability can be a huge burden for teachers.  Teachers must continually use their time and resources effectively to deliver the most effective level of instruction, in the most efficient manner possible.  Teachers need adequate training, professional and parental support and a strong knowledge of the resources and skills they have available. Teachers also need the right temperament and the ability to handle stressors well. At the state, federal and district level, incentives must be provided for teachers to invest their time and energy into costly training programs to further their education and training.  It is one thing for state, federal and district requirements to be placed on teachers, but without adequate training and support, teachers simply will fail to meet expectations and will not adequately meet the needs of their students. 

It is important for teachers of autistic students to understand their unique needs and deliver effective strategies on a consistent basis. Teachers must also be open to the input of parents as parents that are involved in their child's education, can provide a source of additional support to the teacher and ensure that there is a continuum of strategies between home and school.

The Role of the Parent

With the passing of both IDEA and NCLB, several restructuring efforts to identify the role of the parent and increase parental involvement have been made. In 2001, NCLB sought to ensure that children with disabilities have a fair and equal opportunity to participate in obtaining a high-quality education as that of their non-disabled peers. To measure this, providing standards-based curriculum and measuring annual yearly progress (AYP) became the expectation for all students. 

Parents play a vital role in recognizing the signs of autism and developmental delays long before the child's doctors may suspect something is wrong. Parents are their child's primary advocate when obtaining a diagnosis, selecting treatment options, seeking early intervention services, obtaining an I.E.P. and monitoring the school for compliance with services written in the I.E.P.

Parents of children with the life-long disability of ASD face the challenge of not knowing the root cause of the child's disability, understanding their child's disability and knowing what information to trust due to the over flooding of misinformation in the general public about autism. Additionally, there is no universally accepted course of successful treatment (Simpson, 2005) for autism as what may work for one child with autism may not work for another due to the individuality of the symptoms of autism.

Parents of children with ASD, are often desperate to find both a cause of their child's disability and cure. 

Unfortunately, there are many individuals and companies that prey upon the vulnerability of the parents by promising extraordinary and often unproven results. These unproven methods have encouraged unhealthy, unrealistic and often improbable expectations and have impeded the field of ASD (Simpson, 2005).

Websites, testimonials, vitamin makers, the media and even supposed educational and medical companies all promise miracle cures. Parents must become better consumers of intervention methods for children of ASD by utilizing 3 important questions: (1) What are the efficacy and anticipated outcomes that align with a particular practice, and are the outcomes in harmony with the needs of the student? (2) What are the potential risks associated with the practice, and (3) What are the most effective means of evaluating a particular method or approach? (Simpson, 2005). 

Furthermore, parents need to be involved in their child's education as well as other treatment options. Parents can provide additional support for the teacher and the child and ensure a continuum of services between home and school. Parents can also ensure that their child receive effective interventions on a consistent basis. Parents that are involved in their child's treatment and education are more likely to identify any situation or an environmental factor that could negatively impact their child. This may include who and what their child is exposed to both at school. Parents should work to continually establish and maintain open communication with their child's teacher, school and others involved in their child's care. Parents should be diligent in their efforts to monitor what is working for their child and to openly communicate when something is not.

Conclusion

In summary, there is increased prevalence of children diagnosed with autism. However, despite the prevalence, there is often limited or conflicting information available to parents and educators of children with autism. The field of ASD is dependent upon identifying effective methods, treatments and interventions and the information needs to be made more readily available to the public. This is critical not only to the field of ASD, but also to reduce the amount children with ASD are exposed to questionable and ineffective treatments. The field of autism is based on a circle of partners between parents, educators, medical and research providers and federal and state legislation all working together to build effective resources and strategies to best serve those impacted by autism. It is important that parents and educators and other partners unite in developing effective intervention methods and to work together as a team to best serve the needs of the child as well as improving the autism field.

References

Blanton, L., et al. (2011) Preparing General Education Teachers to Improve Outcomes for Students with Disabilities.  AACTE and NCLD Publication. 

Gresham, F. et al (2000). A Selective Review of Treatments for Children with Autism: Description and Methodological Considerations. School Psychology Review, 28(4), pp. 559-575.

No Child Left Behind Act of 2001. 20 U.S.C. 70, 6301 (2002).

Simpson, R., et al (2005). Evidence Based Practices and Students with Autism Spectrum Disorders. Focus on Autism and Other Developmental Disorders, 20(3), 140-149.