Lee Ann Melchor
EEX 6246 Nature of
Autism
University of Central Florida
April 2012
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.
