Autism is a pervasive developmental
disorder that is marked by the presence of impaired social interaction and communication
and a restricted repertoire of activities and interests. The prevalence of autism
has been estimated to affect 1 of every 88 children and is five times more common
in boys than in girls.
Children with autism show a great variance of symptoms, ranging from severe impairment
in the use of nonverbal behaviors that regulate social interaction to a failure
to develop peer relationships appropriate to age.
Their impairment in communication is also marked and sustained and can affect both
verbal and nonverbal skills. Children with autism may have a delay in or a total
lack of spoken language. In children who do speak, there may be a delay in the ability
to sustain a conversation with others or a stereotypic and repetitive use of language.
Children with Autism may also show a lack of varied, spontaneous make-believe play
or social imitative play and often have restricted, repetitive and stereotyped patterns
Children with Autism may have a range of behavioral symptoms, including hyperactivity,
short attention span, impulsivity, aggressiveness, self-injurious behavior, and
temper tantrums. They may show unusual responses to sensory stimuli as observed
by a lack of response to pain or a hypersensitivity to particular sounds. In addition,
children with Autism often have unusual eating and sleeping habits and are described
as being either agitated and irritable or aloof and detached.
Because autism is a severe, chronic developmental disorder that results in significant
lifelong disability, the goal of treatment is to promote the child's social and
language development and minimize behaviors that interfere with the child's functioning
and learning. Intensive, sustained special education programs and behavior therapy
early in life can increase the ability of the child with autism to acquire language
and to learn.
Special education programs in highly structured environments appear to help the
child acquire self-care, social, and job skills. Only in the past decade have studies
shown positive outcomes for very young children with autism. Given the severity
of the impairment, high intensity of service needs, and costs (both human and financial),
there has been an ongoing search for effective treatment.
The diagnosis of autism is a complex and often controversial issue. The most accepted
standards for diagnosis come from the Diagnostic and Statistical Manual of Mental
Disorders – Fourth Edition (DSM – IV), published by the American Psychiatric Association.
The MADSEC report provides a useful, succinct description of the diagnosis and relevant
factors comprising it.
Autism is included under DSM-IV’s pervasive developmental disorders. This is a category
of disorders in which many basic areas of infant and child psychological development
are affected at the same time and to a severe degree.
Autistic disorder has three major hallmarks: qualitative impairment in social interaction,
qualitative impairment in communication, and restricted, repetitive, and stereotypical
patterns of behavior, interests, and activities. Onset in delays is very early,
prior to three years of age.
To meet DSM-IV diagnostic criteria for autism, children will display impairment
in social interaction in at least two ways, impairment in communication in at least
one way, and restricted, repetitive, and stereotypical patterns of behavior, interests
and activities in at least one way.
According to DSM-IV, impairment in social interaction is manifested
in at least two of the following ways:
- Marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye
gaze, facial expression, body postures, and gestures to regulate social interaction;
- Failure to develop peer relationships appropriate to developmental level;
- A lack of spontaneous seeking to share enjoyment, interests, or achievement with
- Lack of social or emotional reciprocity.
Impairment in communication is manifested in at least one
of the following:
- Delay in, or total lack of, the development of spoken language, not accompanied
by an attempt to compensate through alternative modes of communication;
- In individuals with adequate speech, marked impairment in the ability to initiate
or sustain conversation with others;
- Stereotyped and repetitive use of language or idiosyncratic language; and
- Lack of varied, spontaneous make-believe play or social imitative play appropriate
to developmental level.
Restricted, repetitive, and stereotyped patterns of behavior, interests, and
activities are manifested in at least one of the following:
- Encompassing preoccupation with one or more stereotyped and restricted patterns
of interest that is abnormal either in intensity of focus;
- Apparently inflexible adherence to specific, non-functional routines or rituals;
- Stereotyped and repetitive motor mannerisms, such as hand or finger flapping, or
complex whole body movements;
- Persistent preoccupation with parts of objects. (DSM-IV, 1994). (MADSEC, 2000, p.
While the diagnostic criteria described above are widely applicable, it is important
to note that every child with autism is unique, and there is no such thing as a
"average" child with autism. Each child manifests unique strengths and skill deficits,
and it is important to keep in mind that treatment must therefore be oriented to
an assessment of the unique needs of each individual person, not simply prescribed
based on a diagnosis.
Maine Administrators of Services for Children with Disabilities (MADSEC) (2000).
Report of the MADSEC Autism Task Force.
RESOURCES: BIOMEDICAL INTERVENTIONS
CARD's Position on Biomedical Treatments for Autism
ABA VS. FAD TREATMENTS
Autism is currently among the most controversial issues in American public health.
Presumably because of the mysterious nature of the disorder, autism continues to
be the focus of countless "fad treatments," the vast majority of which either lack
scientific support or have been scientifically disproved, outright (e.g., facilitated
communication, see Jacobson, Mulick, & Schwartz, 1995). Several independent
review sources have consistently found that early intensive applied behavior analytic
intervention (ABA) continues to be the only treatment for autism which is backed
by substantial scientific evidence (NYSDH, 1999; Satcher, 1999). The effectiveness
of ABA has been replicated yet again in two recent outcome studies (Howard, Sparkman,
Cohen, Green, & Stanislaw, 2005; Sallows & Graupner, 2005).
A substantial percentage of children with
autism currently receive "biomedical" treatments, despite a current lack of evidence
to support or refute most of them. In a recent survey of parents of children with
autism (Green, et al., 2005), 27% of parents reported that their children with autism
currently receive treatment in the form of special diets and 43% reported using
THE CARD POSITION - SOUND EMPIRICAL RESEARCH
CARD's position on the use of biomedical treatments in clinical practice is
centered around three basic points:
- many parents of children with autism believe that various biomedical treatments
have been responsible for substantial improvement in their children,
- very little research has been conducted on the effects of biomedical treatments
for autism, and
- parents must ultimately make the decision as to which treatments are appropriate
for their children, regardless of diagnosis or disorder.
CARD's position on research on biomedical treatments and on the collaboration
of behavior analysts with clinicians and researchers from other disciplines is based
on the points elaborated above.
At least two factors contribute to what we perceive as a grievous need for sound
empirical research on the effects of biomedical treatments for autism.
First, as the Green, et al., (2005) study demonstrates, biomedical treatments are
being implemented on a widespread basis. This fact alone is more than ample justification
for conducting research on their safety and effectiveness. Such widespread use must
be tempered with sound research. Second, many parents honestly believe that their
children have significantly benefited from biomedical treatments. As clinicians
and applied scientists, we have an ethical responsibility to take the concerns and
beliefs of our clients seriously. To dismiss the convictions of our clients would
be tantamount to disrespect for those who are mostly closely affected by autism.
At the same time, ample research has demonstrated that clients can be made to believe
that an intervention is or is not effective, regardless of the actual effects produced,
and therefore opinion alone (be it that of a client or a scientist) is never to
be accepted or rejected outright. Sound empirical treatment research is the only
path toward addressing such concerns in a sufficient manner.
Throughout the history of science, particular schools of thought and areas of research
have risen and fallen amidst ubiquitous controversy. Ultimately, controversy may
have very little effect on which approaches to a problem are borne out. When a useful
solution to a problem is discovered, and the results are replicated many times over,
little is left to controversy. The use of ABA for children with
autismwas once highly controversial but the unrelenting work of
parents and the repeated and consistent replication of beneficial results in the
scientific literature has moved the field of ABA closer to the mainstream. Most
biomedical treatments for autism have not yet been subjected to repeated, rigorous
outcome research. Thus conclusions regarding their effectiveness (either for or
against) cannot be made.
SKEPTICISM: THE BEST DEFENSE
The best safeguard against controversy in the evaluation of scientific issues may
be skepticism. Skepticism does not refer to disbelief. It refers to the practice
of withholding judgment on a given topic until such time as sufficient evidence
warrants judgment one way or the other (Shermer, 2002). In the absence of conclusive
evidence, then, one might be advised to be skeptical of the view that an intervention
works, as well as to be skeptical of the view that it does not. It is CARD’s position
that conclusive evidence for or against the effectiveness of most biomedical treatments
for autism does not at this time exist. Hence the urgent need for empirical investigation
and the futility of blind acceptance or denial of the validity of the biomedical
treatment of autism.
CONTROVERSY AND RESULTING POLARIZATION
A common feature of any controversy is polarization. A casual review of the major
clinical, research, and advocacy factions within the field of autism today reveals
that most parties ardently maintain that biomedical treatments are either extremely
effective or a total sham. Many who advocate for biomedical treatments appear to
believe that all biomedical treatments are equally effective and all are virtual
cures for autism. Many who reject the utility of biomedical treatments, on the other
hand, do so across the entire range of treatments, without regard to the particular
case for or against the many divergent treatments which fall under the biomedical
umbrella. Particularly given the still largely unknown etiology of autism, either
position appears premature at the current time. Autism is a spectrum disorder which
is comprised of millions of individuals who present with widely divergent characteristics.
It is not yet even known whether all cases of autism share a common etiology. Given
the widely divergent manifestations of the disorder, if any biomedical treatments
are proven to be effective in the future, it seems unlikely that any particular
one will prove equally effective for all persons with autism. Even less likely is
the notion that all biomedical treatments will be equally effective or ineffective,
if the large variability within autism is ignored.
Perhaps most disturbing is the notion that it is not possible to reliably evaluate
the separate and combined effects of ABA and biomedical treatments for autism. This
perspective is based on a fundamental misunderstanding of the nature of experimental
scientific investigation. Virtually all disciplines of experimental science agree
that experimentation consists of altering one variable at a time and observing the
effects that the alteration produces on another variable. Sound experimentation
depends on manipulating one variable at a time while simultaneously controlling
for the influence of extraneous variables. To the extent that this is done (regardless
of the particular scientific field or research topic), inferences can be made about
the effects of one variable on another. There is nothing peculiar about autism,
ABA, or biomedical treatments which preclude this sort of experimentation. It is
common for clinicians (behavioral, medical, or other) to manipulate multiple variables
simultaneously in order to bring about optimal treatment outcome and any time this
is done it is likely to preclude precise analysis of which variables were responsible
for improvement. In order to produce sound research on the separate and combined
effects (if any) of each approach, experiments must hold one variable constant while
manipulating another. This approach to autism research is largely untouched within
the ABA and biomedical communities, but this fact does not preclude such research
from being developed, and indeed it is currently under way at several research sites.
COLLABORATION BETWEEN BEHAVIOR ANALYSTS & MEDICAL PROFESSIONALS
Toward this end, CARD is currently collaborating with medical doctors to conduct
sound research on biomedical treatments for autism. The focus of this effort is
to identify which, if any, biomedical treatments result in which particular improvements
for particular individuals with autism, given their unique biomedical and behavioral
status. All research conducted is interdisciplinary in nature and all treatment
studies evaluate multiple behavioral and biomedical measures. The goal is to establish
a model for interdisciplinary collaboration between behavior analysts and medical
doctors in researching treatment for individuals with autism. It is our hope that
the research produced will forge a path toward addressing the debate regarding biomedical
treatments for autism with sound scientific data, thereby displacing the current
culture of hearsay and controversy.
In summary, the CARD position on the biomedical treatment of autism is not one
of belief or disbelief, it is one of uncertainty. It is our hope that the coming
decade will yield the evidence which is so desperately needed to transform the current
debate about biomedical treatment from one based on subjective report to one which
is grounded in sophisticated analysis of sound scientific data.
- Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., Sigafoos, J. (in
press). Internet survey of treatments used by parents of children with autism. Research
in Developmental Disabilities.
- Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005).
A comparison of intensive behavior analytic and eclectic treatments for young children
with autism. Research in Developmental Disabilities, 26, 359-383.
- Jacobson, J., Mulick, J. A., & Schwartz, A. A. (1995). A history of facilitated
communication: Science, pseudoscience, and antiscience science working group on
facilitated communication. Americal Psychologist, 50, 750-765.
- New York State Department of Health Early Intervention Program. Clinical Practice
Guideline: Report of the Recommendations, Autism/Pervasive Developmental Disorders,
Assessment and Intervention for Young Children. 1999. Publication #4215. Health
Education Services, P.O. Box 7126, Albany, NY 12224.
- Sallows, G. O., & Graupner, T. D. (2005). Intensive behavioral treatment for
children with autism: Four-year outcome and predictors American Journal on Mental
Retardation, 110, 417-438.
- Satcher, D. Mental health: A report of the surgeon general. U.S. Public Health Service.
1999. Bethesda, MD
- Shermer, M. (2002). Why people believe weird things: Pseudoscience, superstition,
and other confusions of our time. New York, NY: Henry Holt.
RESOURCES: AUTISM ASSOCIATIONS
FOR AUTISM RESOURCES IN YOUR AREA, CLICK HERE.
ACT Today! is a national nonprofit organization whose mission is to raise awareness
and provide treatment services and support to families to help their children with
autism achieve their full potential.
The Autism Society, the nation's leading grassroots autism organization, exists
to improve the lives of all affected by autism.
Since 1967 ARI has focused on studying treatments that improve the quality of life--sometimes
to the point of recovery--for those on the autism spectrum.
Autism Resources has information and links regarding the developmental
disabilities autism andAsperger's Syndrome.
Autism Speaks aims to bring the autism community together as one strong voice to
urge the government and private sector to take action to address this urgent global
TheAutSpot.com is a free online community linking family members and specialists
nationwide who deal with children diagnosed with autism.
The mission of the National Autism Association is to respond to the most urgent
needs of the autism community, providing real help and hope so that all affected
can reach their full potential.
The mission of NIMH is to transform the understanding and treatment of mental illnesses
through basic and clinical research, paving the way for prevention, recovery, and
We monitor all the major news sources, websites and the latest research for important
and practical news and developments with a balanced, no-spin presentation.
TACA provides support and education for families affected by autism through local
chapters, coffee talks, parent support, educational events, and more.
USAAA is a leading nonprofit organization for education, support, and solutions.
Inspire builds online health and wellness communities for patients and caregivers,
in partnership with national patient advocacy organizations, and helps life science
organizations connect with these highly engaged populations.
RESOURCES: AUTISM EDUCATION
Securing Funding for Your Child's Program
Under both State and Federal Law, your child is entitled to a Free and Appropriate
Public Education (FAPE). Therefore, if it is established that the system of public
education available to your child is not "appropriate" for his or her needs, it
may be possible to secure funding for an ABA program which may be considered more
appropriate to meet the educational needs of your child.
Since Autism encompasses educational delays as well as behavioral aberrations, you
may be able to secure partial funding from your school district or local education
authority for the educational needs of your child, and partial funding from your
local regional center or Medicaid agency for the behavioral needs of your child.
Often, education authorities and Medicaid or similar state agencies work out a formula
to share the cost of your child's ABA program.
If your child is under the age of three, you will not be eligible to gain funding
from your school district. Because of this, you may be able to gain the bulk of
your funding from your state Medicaid or Health Department agency. To gain partial
or full funding for your child's ABA program from such an agency, you must contact
the service coordinating agency in your area (such as a Regional Center) and request
that an assessment of your child be conducted. A Medicaid caseworker will be assigned
to you and an intake and subsequent multidisciplinary assessment will be arranged.
After the assessment an Individual Family Service Plan (IFSP) meeting will be conducted.
The purpose of the meeting is to discuss the results of the multidisciplinary assessment
and propose goals and objectives. Once goals and objectives are agreed upon, placement
and services that will assist your child in meeting those goals will be discussed.
At this time you may be offered behavioral services. It is your responsibility to
ascertain the level of experience of the vendor offered to you and also to determine
if the number of hours you have been offered is appropriate. Therefore, it would
be necessary for you to gain the advice of a well-known private ABA professional
if you are unsure about the options given to you by the state agency.
If your child is over the age of three, you may be able to gain funding from your
local education authority (school district). If your child already qualifies for
special education services and has a classroom placement and/or has been receiving
special services, you may request a change in services and/or placement. In other
words, you may request that the district funds for an ABA program. In order to request
such funding, you must ask your district to hold an Individualized Education Plan
(IEP) meeting. All such requests should be made in writing. If you are approaching
your school district for the first time, they will want to ascertain the eligibility
of your child for special education services. An assessment will be scheduled and
following the assessment an IEP meeting will be arranged to discuss the results
of the evaluation and propose goals and objectives. Once goals and objectives are
agreed upon, placement and services will be offered. Once again, if you have questions
about the appropriateness of the offer, it would be necessary for you to consult
with a private ABA professional who specializes in such treatment. Furthermore,
many school districts provide ABA programs themselves and CARD recommends that you
observe and evaluate the programs offered by your local education authority as these
programs may be able to meet your child's needs.
Another option you may have for funding is your insurance company. If your insurance
policy does not exclude Autism as a disorder or Applied Behavior Analysis as a treatment,
you may be able to gain some funding for ABA services. Often, insurance companies
will only provide funding if the provider is a licensed psychologist or physician.
INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA)
IDEA, the Individuals with Disabilities Education Act, mandates that eligible children
with disabilities have available to them special education and related services
designed to address their unique and individual needs. IDEA has six principles that
provide the framework around which special education services are designed and provided
to students with disabilities. These principles include:
- Free Appropriate Public Education (FAPE)
- Appropriate Evaluation
- Individualized Education Program (IEP)
- Least Restrictive Environment
- Parent and Student Participation in Decision Making
- Procedural Safeguards
Free Appropriate Public Education: IDEA guarantees that each child with a disability
will have available a free appropriate public education, often identified as FAPE.
FAPE refers to special education and related services that:
- "Have been provided at public expense, under public supervision and direction, and
- Meet the standards of the State Educational Agency
- Include an appropriate preschool, elementary or secondary school education
- Are provided in conformity with the Individual Education Program (IEP)" (Section
"Appropriate" is the critical term in FAPE - the education that a child with disabilities
receives needs to address his or her specific and individual educational needs.
As such, what is "appropriate" for one student may not be "appropriate" for another.
Determining what is "appropriate" for each student involves several processes. First,
an individualized evaluation is conducted. The purpose of the evaluation is to identify
the student's areas of strength and weakness in as much detail as possible. The
next step is for the IEP team to discuss and develop an IEP for the student. The
IEP team generates and identifies appropriate goals and objectives for the student
to work on throughout the year. Furthermore, placement and the type of special education
and related services appropriate for the student are identified. This decision is
based on the goals and objectives that have been developed as well as the child's
individual needs. In addition to specifying an appropriate placement, the team must
identify and provide the supplementary aids and services in order for the child
to succeed in the given educational setting.
Appropriate Evaluation: This principle assures that all children
with disabilities are appropriately assessed for the purpose of determining eligibility,
educational programming, and individual performance monitoring. Moreover, evaluation
activities should gather information related to enabling the child to be involved
in the general curriculum. Furthermore, testing and evaluation materials must be
selected and administered so as not to be racially or culturally discriminatory.
The information gained through the evaluation should be used to assist in the determination
of what an "appropriate" education would be for the child.
INDIVIDUAL EDUCATION PROGRAM:
The term Individualized Education Program or IEP refers to "a written statement
for each child with a disability that is developed, written and as appropriate,
revised at least once per year." Each child's IEP contains statements as to the
- The child's present levels of educational performance including how the child's
disability affects his or her involvement in the general curriculum
- Measurable annual goals including benchmarks or short-term objectives
- The special education and related services and supplementary aids and services to
- The program modifications or supports that will be provided to the child
- An explanation of the extent to which the child will not participate with nondisabled
students in the regular class and in extracurricular and nonacademic activities
- Any individual modifications made in the administration of State and District wide
- The projected date for the beginning of services, and the anticipated frequency,
location and duration of those services
- How the child's progress toward the annual goals will be measured and how the parents
will be kept regularly informed of that progress, at least as often as they are
informed of their nondisabled children's progress
LEAST RESTRICTIVE ENVIRONMENT:
The Least Restrictive Environment (LRE) is determined based upon
each child's individual needs. The law's presumption is that the student should
be educated in the regular classroom with nondisabled children, with supplementary
aids and services provided as necessary to enable the student to succeed in that
setting. A student's placement in the general education classroom is the first option
the IEP team must consider. If it is determined that a student cannot be educated
in the general education classroom, even when supplementary aids and services are
provided, an alternative placement must be considered. As such, schools are required
to ensure that a continuum of alternative placements are available. These may include,
but are not limited to, special classes, special schools or home instruction.
PARENT AND STUDENT PARTICIPATION IN DECISION MAKING:
Schools are required to involve each child's parent(s) in the development of the
child's IEP. Parents must be notified, must give consent, and parent's input must
be solicited and considered. Students may be members of the IEP team and participate
to the extent possible.
There are three main components of the law's procedural safeguards
- To protect the rights of children with disabilities and their parents
- To ensure that the children and their parents are provided with the information
needed to make decisions about the provision of FAPE
- Procedures and mechanisms are in place to resolve disagreements between parties
Autism Learning Games: Camp Discovery
Teach your child new skills with Autism Learning
Games: Camp Discovery! Developed by the Center for Autism and Related Disorders
(CARD), Camp Discovery offers a growing suite of learning games that appeal to children
and are approved by parents, teachers and therapists. Based on CARD’s renowned curriculum,
Camp Discovery creates fun learning opportunities for children with autism and is
an excellent learning tool for children ages 2 and up.
BASED ON RESEARCH
The teaching methods used in Camp Discovery were designed by experts in the field
of autism and are grounded in scientifically-proven behavioral principles, including
reinforcement and prompting. For correct responses, players receive visual and auditory
rewards to keep them motivated and engaged. After incorrect responses, a unique
prompting system guides the player to answer correctly. Although Camp Discovery
was designed for children with autism, all children can benefit from its carefully
developed teaching methods.
Many features set Camp Discovery apart from other children’s learning apps:
- Every Learning Trial Begins with a Preference Assessment Rewards for correct responses
are personalized for each player based on preferences determined in the assessment.
Since each player is unique and preferences will change, the assessment is repeated
regularly to keep the game reinforcing.
- Fun Mini Games Motivate Learning Mini games serve as both a break from learning
and an exciting reward for completing rounds.
- Progress Reports Track Improvement Camp Discovery allows you to track your child’s
progress across games and generates graphs to show you how much your child is learning.
- Parents are in Control Multiple settings can be adjusted to personalize your child’s
SIMPLE USER INTERFACE
The Camp Discovery interface was designed for easy use. The games are voice narrated,
and responses require dragging and dropping or touching flashcards.
In the News
Search Quality Software, “Mobile Project Manager Fosters Collaboration and Helps Autistic
Kids”, February 6, 2014
The Cents’able Shopping, “FREE Download of Amazing Autism Learning Games Camp Discovery App
for Kids”, January 19, 2014
Cult of Mac, “Camp Discovery Uses The iPad to Teach Kids With Autism”, January
Cydia Repo, “Camp Discovery App Review : Autism Learning Games” , January
The iPhone Mom, “Autism Learning Games: Camp Discovery Review”, January 15, 2014
Smart Apps for Kids, ”Good Free App of the Day: the amazing Autism Learning Games: Camp
Discovery!”, January 15, 2014
WBNS-TV, “App Helps Kids with Autism“, January 15, 2014
Advanced Healthcare Network, “New Autism App Gives Kids Ability to Learn”, January 15, 2014
Dexinger, “New Autism
App Gives Kids Ability to Learn and Parents Means to Track Progress”, January
Available for iPad here: https://itunes.apple.com/us/app/camp-discovery-objects/id585678823?mt=8
Available for Android devices here: https://play.google.com/store/apps/details?id=card.
Coming soon to iPhone and Kindle devices.
YOUR SOURCE FOR AUTISM INFORMATION
Autism Live is an interactive webshow providing support, resources, information,
facts, entertainment and inspiration to parents, teachers and practitioners working
with children on the Autism Spectrum.
Viewers are encouraged to participate by asking question of experts, offering suggestions
for topics to be discussed and sharing progress their children have made.
Host Shannon Penrod
Shannon Penrod is the proud mother of a nine-year old who is recovering from Autism.
Her son Jem was diagnosed at the age of two and a half after having lost virtually
all of his language and social skills.
Helping her son on his journey through Autism became Shannon’s top priority. Whether
it was researching new diets, learning the legal ins and outs of special education
law or finding funding for ABA therapy, Shannon became her son’s best advocate and
an advocate for many other families. In 2009, Shannon began the host and producer
of Everyday Autism Miracles, a weekly radio show that focuses solely on Autism and
An award winning stand-up comedienne, director and author, Shannon’s goal is to
provide families with information and hope while on their journey through autism.