| The World Health Organization uses a similar but somewhat different
criteria (ICD-10 Classification of Mental and Behavioural Disorders,
1992): |
| At least 8 of the 16 specified items must be fulfilled. |
| A. |
Qualitative impairments in reciprocal
social interaction, as manifested by at least three of the following
five: |
|
| |
1. failure adequately to use
eye-to-eye gaze, facial expression, body posture and gesture to
regulate social interaction. |
|
| |
2. failure to develop peer
relationships. |
|
| |
3. rarely seeking and using other
people for comfort and affection at times of stress or distress
and/or offering comfort and affection to others when they are
showing distress or unhappiness. |
|
| |
4. lack of shared enjoyment in
terms of vicarious pleasure in other peoples' happiness and/or
spontaneous seeking to share their own enjoyment through joint
involvement with others. |
|
| |
5. lack of socio-emotional
reciprocity. |
|
| B. |
Qualitative impairments in communication
as manifested by at least one of the following: |
|
|
1. lack of social usage of
whatever language skills are present. |
|
|
2. impairment in make-believe and
social imitative play. |
|
|
3. poor synchrony and lack of
reciprocity in conversational interchange. |
|
|
4. poor flexibility in language
expression and a relative lack of creativity and fantasy in thought
processes. |
|
|
5. lack of emotional response to
other peoples' verbal and non-verbal overtures. |
|
|
6. impaired use of variations in
cadence or emphasis to reflect communicative modulation. |
|
|
7. lack of accompanying gesture
to provide emphasis or aid meaning in spoken communication. |
|
| C. |
Restricted, repetitive and stereotyped
patterns of behaviour, interests and activities, as manifested by at
least two of the following six: |
|
|
1. encompassing preoccupation
with stereotyped and restricted patterns of interest. |
|
|
2. specific attachments to
unusual objects. |
|
|
3. apparently compulsive
adherence to specific, non-functional routines or rituals. |
|
|
4. stereotyped and repetitive
motor mannerisms. |
|
|
5. preoccupations with
part-objects or non-functional elements of play material. |
|
|
6. distress over changes in
small, non-functional details of the environment. |
|
| D. |
Developmental abnormalities must have
been present in the first three years for the diagnosis to be made. |
|
|
There is a translation to Spanish of the Childhood Autism Rating
Scale (Spanish, Lopez & Vazquez) developed by colleagues at the
Universidad Autonoma de Baja California that can be recommended as a
method to collect information from parents and service providers.
Core Features
Both the DSM-IV and ICD-10 diagnostic criteria and an important research
review (Matson, 1994) emphasize the areas of abnormal behavior that are
considered common to all cases of autism and those that are associated
with the disorder by the frequency of their occurrence. Core features
are present in most cases most of the time.
Social skills deficits. Research findings in this area have included
lack of normal attachments to parents, social intent not signaled by
smiles or gestures, poor and avoidant eye contact, poor imitation
skills, no peer friendships, no cooperative peer play, and infrequent
displays of affection or empathy.
Language deficits. Studies in language include poor communication is
most all cases with some never acquiring any speech. Also found are less
frequent speech, use of speech for social purposes limited, unusual
voice quality, and impaired use of nonverbal communication.
Insistence on sameness. Autistic children are reported to have problems
with changes in the environment or routines and show ritualistic
behavior patterns. Stereotypic behaviors such as body rocking and hand
flapping are also common.
Responses to sensory stimuli. Frequent hypersensitivity and occasional
hyposensitivity to visual, auditory, and tactile stimuli have been
reported in autistics.
Associated Features
Associated features on the other hand are those that occur in some cases
some of the time. In fact, the coexistence of these features complicates
the diagnostic process.
Intelligence. Scores range from superior to profoundly retarded. Eighty
per cent are concurrently diagnosed as retarded, with 60% having IQs of
less than 50.
Stimulus overselectivity. Several studies have found a pattern of
selective processing of sensory information which might contribute to
insistence on sameness and generalization difficulties.
Self-injurious behavior. As many as 40% have been reported to exhibit
behaviors like biting, head banging, hair pulling, and scratching.
. An unusual variety and intensity of social and sensory-related fears
Organic disorders. There are a number of organic disorders that occur in
individuals with autism at a higher rate than the normal population,
including fragile-X syndrome, tuberous scerosis, and neurofibromatosis.
it has also been reported that as many as one-third develop seizures by
early adulthood.
Autism is a spectrum disorder which means that the characteristics of
autism and the severity of its symptoms occur in a wide variety of
combinations from mild to severe. Two individuals with the same
diagnosis of Autistic Disorder might show very different behaviors and
have very different skills.
Differential Diagnosis
In addition to the Autistic Disorder, there are four other disorders in
the Pervasive Developmental Disorders category and require differential
diagnosis.
Asperger's Disorder - characterized by impairments in social
interactions and the presence of restricted interests and activities,
with no clinically significant general delay in language, and testing in
the range of average to above average intelligence.
Pervasive Developmental Disorder - Not Otherwise Specified - (commonly
referred to as atypical autism) a diagnosis of PDD-NOS may be when a
child does not meet the criteria for a specific diagnosis, but there is
a severe and pervasive impairment in specified behaviors.
Rett's Disorder - a progressive disorder which, to date, has occurred
only in girls. Period of normal development and then loss of previously
acquired skills, loss of purposeful use of the hands replaced with
repetitive hand movements beginning at the age of 1-4 years.
Childhood Disintegrative Disorder - characterized by normal development
for at least the first 2 years, significant loss of previously acquired
skills.
http:www.autism-society.org/whatisautism/autism.html
Theory of Mind
One other line of inquiry that is interesting and has treatment
implications is the theory of mind (Frith, 1989). This work has
developed a psychological theory that individuals with autism have a
kind of "mind blindness." This metarepresentational deficit results in
an inability to infer the content of others' mental states. Autistics
then appear to operate in a literal way and unable to put events into
context. The problem seems to be understanding that people have mental
states different from their own and different from their perception of
the real world. In other words, "if I know it, you know it," or "if I
believe it, you must believe it."
Causes of Autism
It is now commonly accepted that autism is a biological or neurological
difference in the brain. What causes these differences is not known.
Also, what causes the various forms of autism is unclear and might
suggest that there is more than one cause. Because a familial pattern
has been found for autism, a genetic basis is suspected. There are also
continued investigations of some environmental causes such as mercury
contained in vaccinations or exposure to other toxic elements whether
prenatal or during infancy.
Autism in not a mental illness or a severe emotional disability and
theories about bad parenting or psychological growth and development
problems have been rejected.
The lack of evidence about the cause of autism has had a resultant
impact on the treatment of autism. Various theories abound and some
acrimony exists among their adherents.
Treatment
Because we don't know the cause of autism, we can expect a wide range of
proposed treatments. Some of the approaches are based in scientific fact
and others seem to be based on wishful thinking.
There is considerable evidence that early intervention is important for
maximum growth. The treatments that are in general use include applied
behavior analysis, auditory integration training, dietary interventions,
discrete trial teaching, medications, music therapy, occupational
therapy, alternative communication systems, sensory integration
training, speech/language therapy, and vision therapy. Not all of these
approaches enjoy the full confidence of the profession and some have
been accused of exaggerating their success. Regardless of which method
or combination of methods are used, individuals with autism need highly
structured and individualized programs. They frequently need individual
attention and programming that exceeds the traditional school day.
Parent support and training are also considered critical elements in a
successful program.
One of the major obstacles to the inclusion of children with
disabilities in both school and the community, is behavior that is
inappropriate and disruptive. For children with severe disabilities,
behaviors such as tantrums, aggression, or self-injury are challenging
beyond what regular education settings are prepared to handle. Families
of children with severe disabilities are also looking for assistance
beyond the traditional manipulation of consequences offered by most
behavior management programs.
If we are to accomplish inclusion, it will be necessary not only to
identify treatment methods that work, but ones that will be acceptable
in the context of inclusive environments. The three concepts of social
validity identified by Wolf (1978) are important considerations in
reaching this goal. These are feasibility - are we able to use the
strategy; desirability - are we willing to use the strategy; and
effectiveness - does the strategy make a difference for the individual
in increasing inclusion opportunities? In other words, we need treatment
strategies that both parents and teachers are able and willing to use
and that make a real difference for the individual and their
opportunities to participate in school and in the community.
Research on the efficacy of special education is such that the urgency
of placement in regular education is a very real issue for many children
with disabilities. Justification for placement in special education seem
unwarranted without some compelling case for its value not only for
academic purposes, but as a larger issue of acceptance and even
lifestyle (Swartz, 1998). The case can be made that the only obstacle to
the inclusion of most children with disabilities is our preparedness to
accommodate their needs, or worse, our willingness.
Promising Practices
Positive Behavior Support
An increasing body of research in the use of positive behavior support
(PBS) has demonstrated that these strategies are highly effective for
use with the behaviors presented by children with severe disabilities
(Carr, Horned & Turnbull, 1999). In addition, PBS meets the various
social validity criteria in most cases and facilitates inclusion of
children with disabilities. Unlike traditional behavior management,
which views the individual as the sole problem and seeks to "fix" him or
her by quickly eliminating the challenging behavior, PBS views such
things as settings and lack of skill as parts of the "problem" and works
to change those. As such, PBS is characterized as a long-term approach
to reducing the inappropriate behavior by teaching a more appropriate
behavior, and providing the contextual supports necessary for successful
outcomes (ERIC, 1999).
Effective behavior change must not only reduce inappropriate behaviors
it must also teach suitable alternatives. These changes should not only
help the child in the immediate environment, or the short term, they
must also be important for their life after school, or the long term.
The key concept of PBS was then determined to be to change a problem
behavior, it is first necessary to remediate deficient contexts.
Deficient contexts were found to come in two varieties, those related to
behavior repertoires and those related to environmental conditions.
Behavior repertoires means that the individual does not have the
necessary behaviors to be successive. Communication skills, social
skills, self-management are all found to be inadequate for the demands
of their day-to-day existence, whether in school, home, or community.
Environmental conditions means that the stimuli in any particular
environment are not conducive to appropriate behavior for this
individual and contributes to the emergence of problem behaviors.
In applying PBS, the research review completed by Carr and his
colleagues found two categories of intervention: stimulus-based and
reinforcement-based (Carr, et al., 1999). When environments are
deficient it is when there are too few stimuli to support positive
behavior and that changes in this environment are necessary as part of
the effort to help children with disabilities exhibit more appropriate
behavior. On the other hand, from a reinforcement perspective, the
existence of positive behaviors competes with or makes negative
behaviors unnecessary because the positive behaviors provide an
alternative for accessing the available reinforcement. In sum, PBS tries
to change the environment so that the conditions for appropriate
behavior and its reinforcement are available and to teach appropriate
behaviors as a substitute for accessing reinforcement in the
environment.
Positive behavior support appears to be best suited for long-term change
and is proactive to the extent that it attempts to teach behaviors and
impact the environment that surrounds these behaviors. This is
contrasted to aversive or punitive approaches that seem best suited to a
crisis management mode. From the perspective of the family, and in
keeping with the principles of social validity, PBS would seem to be the
appropriate choice because of its good fit with a family environment.
Parents are able to work with their children using techniques that are
effective and at the same time part of a normal pattern of interaction.
From the perspective of the school, PBS is a good match because of its
suitability for use in inclusive settings and because it is primarily a
teaching method. Positive behavior support is procedure more likely to
encourage the inclusion of children with disabilities in regular
classrooms.
Redirective Therapy
Redirective Therapy was developed as part of a training program in a
university clinic for parents and families of children with pervasive
developmental disabilities (Swartz, 1994). Parents had reported that
though some techniques currently available appeared to be effective,
they were too harsh and too unusual as a pattern of parent-child
interaction. They felt that the treatment became an aversive to both
parent and child because of its intensity and that its suitability for
the community or an inclusive school setting was an issue. The criteria
used in the development of Redirective Therapy (RT) was that it must
allow for a positive interaction between parents and their children and
that it must be suitable for use in all settings. Using research in
nonpunitive techniques (Donnellan, et al., 1998) the strategy focused on
a simple pattern of redirection with teaching an appropriate behavior as
the end goal. Similar in this regard to the strategy identified as
differential reinforcement of alternative behavior (DRA), Redirective
Therapy diverged by electing to use only social rewards. It was felt
that since one of the primary goals for most children in the program was
increased socialization, the use of social rewards would be the first
important step in teaching social skills.
Therapists using RT were taught to interrupt the undesired behavior and
redirect the child to an appropriate behavior. They were instructed to
do this interruption in the least intrusive way possible (for example, a
word or a gesture would be a preferable interruption to a physical cue).
Social reinforcement (praise or touch, or both) would immediate follow
the interruption and redirection. In this way, the concern about limited
availability of reinforcement in the use of differential reinforcement
of other behaviors (DRO) could be resolved. This pattern was repeated
until the child stayed on the new task and exhibited an appropriate
behavior. Parents reported that their good feeling about this strategy
was that they could use it at home and on any trips into the community.
In another words, it met both the social validity criteria of feasible
(I can use it) and desirable (I will use it).
http://www.stanswartz.com/autismres.htm
Early Literacy Learning
Another promising practice is an intense literacy learning project
developed in the United States and Mexico for all children including
those having difficulties and children with disabilities (Swartz, Shook,
& Klein, 2001). This work teaches children to read and write using
research based teaching methods. The model also focuses on professional
development and a particular organization of service provision. The
amount of time focused on literacy is increased to a full school day and
content areas are taught using literacy strategies. In addition,
teachers, both regular and special, align their strategies. This means
that the teachers use the same teaching methods, the same classroom
routines, and similar materials. This alignment has the benefit of
reducing confusion and allowing children to build on their own knowledge
from year to year. Children with special needs benefit from this
alignment because they receive individualized and specialized
instruction but using the same methods and procedures as those the
regular classroom. This supports their learning and makes for a smoother
transition from special to regular education settings. It also supports
inclusion. Special education does not necessarily mean different
teaching methods, it should mean teaching that is more strategic because
of the opportunity to individualize made possible by one-to-one or small
group instruction.
Teachers are trained to use a gradual decline of teacher support and a
gradual increase in student independence based on demonstrated student
capability. This reduction of teacher support is based on observations
of individual child growth in understanding the process of literacy. The
child's use of a variety of problem-solving strategies is supported
through good teacher decision-making about ways to assit each child
toward the goal of independence. The elements of the instructional
framework are designed to help each child and the whole class move
together toward that goal. The framework is designed to structure
classrooms that use literacy acitivites throughout the day of every
school day. Other curricular areas are delivered using literacy
activities as the method of instruction.
Early Literacy Learning Framework of Instruction |
| Phonological Skills |
| |
Builds a foundation of phonemic
awareness for explicit skills learning
Teaches systematic phonics with writing, spelling and reading
Supports development of accurate spelling |
| Oral Language Development |
| |
Assists students in language acquisition
Develops and increases vocabulary
Promotes the use of accurate language structure
Provides a basis for reading comprehension |
| Reading Aloud |
| |
Introduces good children1s literature in
a variety of genre
Increases repertoire of language and its use |
| Shared Reading |
| |
Promotes the development of early
reading strategies
Encourages cooperative learning and child-to-child support
Stresses phonemic awareness and phonological skills |
| Guided Reading |
| |
Allows observation of strategic reading
in selected novel texts
Provides direct instruction of problem-solving strategies
Allows for classroom intervention of reading difficulties |
| Independent Reading |
| |
Allows children to practice strategies
being learned
Develops fluency using familiar texts
Encourages successful problem solving |
| Interactive Writing |
| |
Provides an opportunity to jointly plan
and construct text
Develops letter-sound correspondence and spelling
Teaches phonics and the writing process |
| Independent Writing |
| |
Encourages writing for different
purposes and different audiences
Fosters creativity and an ability to compose
Allows opportunity to practice or attempt new learning |
|
The Redlands School, An American Mexican Project, has been developed
as a demonstration of this literacy learning model and uses a dual
immersion, English and Spanish instructional design. Children with
disabilities are integrated with their normal peers throughout the day.
http://www.cell-exll.com
http://www.stanswartz.com/redlands_school/redlands.html |
Inclusion
There wouldn't need to be a discussion about inclusion if there hadn't
been exclusion. Individuals with disabilities have been treated
differently and excluded from our society and our communities in many
ways. What is the case for many disabilities is even more so for autism
because of their social and communication deficits.
In the United States we have a long history of excluding groups,
sometimes we think for their good, and other times clearly for our own
good. In the early history of the U.S. you could only vote if you were a
land owner and if you were a male. Mostly boys went to school, our
doctors and lawyers were all male, blacks had their own places to live
and went to separate schools, and children who didn't speak English
often had no school at all to attend. If you had a disability or special
needs there were no public services and certainly no public school. Most
of this has changed. We now have mostly an integrated society, except
for children with disabilities. This group continues to be segregated
and isolated. We continue to exclude them from the mainstream of our
society. They are special and so we provide them with a special school
or a special classroom. What was learned from past exclusion will also
be learned from the exclusion of those with disabilities. It serves no
useful purpose and it is wrong.
There are numerous problems with how we provide services to children
with disabilities that question our use of separate programs. Issues to
consider include:
1. The evaluation systems used for children with disabilities
produce results hardly better than the flip of a coin. We continue to
identify children as handicapped using tests and procedures in which
professional examiners have no confidence and these various tests are
unable to predict educational need, the only legitimate purpose that
this kind of testing could have.
2. Growth in certain categories of handicapping condition has
clearly become more a function of political pressure and professional
fad than the characteristics and needs of students. Some disability
categories like learning disability has grown almost 100% per decade.
And the growth in autism has been attributed by some to the result of
service availability for this category as compared to other
disabilities.
3. Inclusion affects only about 5% of the mild to moderate
category and even fewer children in the severe category. This might be
acceptable if there were good student outcomes for special programs
provided in exclusionary settings. Unfortunately, this is not the case.
4. There is very little evidence that the services provided to
children with disabilities is very effective. Few graduate from school,
few have jobs, few live independently, and few have social lives outside
of their immediate families. It appears that, in some cases, it would
have been better to do nothing. In most cases, the outcomes of special
education are not even measured.
The premise of special education is that there are two kinds of
learners, normal and abnormal, and that they need two separate systems
of education, needs to be challenged and changed. This dichotomy is
false. Learners are found on a continuum and can be served in integrated
settings. There are no services provided in special education that
cannot be provided in a regular school.
What is needed is a single, unitary, integrated system of education for
all children. There should be no tracks, no special classes, or
segregated schools. When children participate in their learning
together, when no one is excluded, everyone will the better for it. The
stigma of separation, the emotional impact of being considered so
different as to be excluded or set aside, is sufficiently harmful,
sufficiently devastating to the self esteem and feelings of self-worth
of a child as to negate whatever benefits might be expected to accrue
from the services provided.
An online course has been developed at California State University, San
Bernardino that focuses on the issues of disability and mainstreaming.
http://www.stanswartz.com/courses.htm
Family Involvement
There are a number of issues that are key to ensuring successful family
involvement in the education of children with disabilities. It might be
said that there are three levels of parental involvement. The first is
presence. It means they attend meetings but have no real involvement in
the program of their child. The next level is participation. Parents do
what they are asked and support and participate in the program. The
highest level, and the one that is needed for truly effective program,
is parent partnership. Not just in name, but partners in reality. This
recognition by professionals that effective programs are dependent on
informed and involved parents is critical. Parents need to realize that
their involvement is vital and not just gesture of show of support.
A survey was completed to determine what parents of autistic children
considered their greatest needs. The survey covered three major areas of
need. When asked what service needs they had for their children they
listed seven major areas in the following rank order: respite, speech
therapy, recreation/social, dental, psychological, medical, and legal.
For the development of a program for their child they listed needs such
as assistance with the development of a program plan, procedures to
evaluate the program their child was receiving, the support of an
advocate, independent evaluation, and support to challenge the actions
of their service provider. They were also asked what behavior problems
they were having in the home. These were rank ordered: communication,
socialization, compliance, tantrums, eating, routine refusal, and
sleeping. And their personal needs were reported as participation in a
support group, parenting training, individual counseling, and marital
counseling. This survey was interesting because the results were not a
match to the expectations of the professional staff. Most programs were
developed without asking about parent need. To have parents as partners,
their needs will be an important consideration.
Conclusion
From these various issues what can be considered the primary challenges
to those committed to the education and treatment of children with
disabilities?
1. Definition and diagnosis need to be improved. Effective
service relies on understanding the disability, its characteristics, and
the education and treatment needs.
2. Research into prevention and cure should be established as
high priorities.
3. Effective treatments are needed but they need to be respectful
of the rights of the individual. Only services that meet the social
validity criteria should be considered.
3. Children with disabilities should be included in our schools
and in our communities. There is no justification for current
exclusionary practices. Inclusion is the right thing to do.
4. Parents as partners is the key to effective parental involvement.
Program success is directly related the the level of parental
involvement.
And last, more international collaboration and exchange is needed.
Professionals all benefit as they learn from one another.
References
American Society for Autism. What is Autism? 2000.
Carr, E.G., Horner, R.H., & Turnbull, A.P. (1999). Positive behavior
support for people with developmental disabilities. Washington, DC:
American Association on Mental Retardation.
Donnellan, A., LaVigna, G., Negri-Shoultz, N., & Fassbender, L. (1988).
Progress without punishment. New York: Teacher's College Press.
ERIC Research connections in special education (Winter, 1999). Positive
behavior support. ERIC Clearinghouse on Disabilities and Gifted
Education.
Frith, U. (1989). A psychological theory of autism.
Los Angeles Times. April 16, 1999. Development Disorders Increase.
Matson, J. (1994). Autism. Pacific Grove, CA: Brooks/Cole.
Swartz, S.L. (1994). Redirective therapy: Guidelines for use in school
and home. San Bernardino, CA: California State University.
Swartz, S.L. (1998). Inclusion of children with disabilities in regular
school programs. In Z. Jacobo & M. Villa, Sujeto, educacion especial e
integracion, Mexico: Universidad Nacional Autonoma de Mexico.
Swartz, S., Shook, R., Klein, A., & Hagg, C. (2001). Ensenanza inicial
de la lectura y la escritura. Mexico City: Editorial Trillas.
Swartz, S., Shook, A., & Shook, R. (2001). Foundation for California
Early Literacy Learning, Technical Report. Redlands, CA.
Swartz, S., Klein, A., & Shook, R. (2001) Interactive writing and
interactive editing. Carlsbad: CA: Dominie Press.
Wolf, M.M. (1978). Social validity: The case for subjective measurement,
or how applied behavior analysis is finding its heart. Journal of
Applied Behavior Analysis, 11, 203-214.
Biography
Stanley L. Swartz, Ph.D. is Professor of Special Education at California
State University, San Bernardino. He is the Director of the Autism
Research Group and the Foundation for California Early Literacy
Learning. He is also a visiting professor at the Universidad de la
Habana, Universidad Nacional Autonoma de Mexico, and the Universidad
Autonoma de Baja California and a Lecturer at the University of
California. Dr. Swartz has contributed to more than twenty books and
written more than 100 papers and articles. He has also written more than
30 children's books that are published in both English and Spanish. He
is the President of the Redlands School in Mexico City, an English and
Spanish bilingual elementary school.
Email: stanley_swartz@eee.org
Web page: http://stanswartz.com
Telephone: 909.880.5601
Fax: 909.862.4045
Translation web page:
http://world.altavista.com/tr |
|