"If a child can't learn in the way that we teach, then we must teach in a way he can learn."Ivar Lovaas, Ph.D
FMFEAT
"If a child
can't learn in the way that we teach, then we must teach in a way
he can learn."Ivar Lovaas, Ph.D
FMFEAT
(Fargo Moorhead Families for Effective Autism Treatment)
"Serving Fargo Moorhead and Surrounding Area"
What is Autism? Autism is a developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the brain, autism and its associated behaviors occur in approximately 15 of every 10,000 individuals. Autism is classified by the American Psychiatric Association as a Pervasive Development Disorder (APA, 1994). It is defined by symptoms appear before the age of three which reflect delayed or abnormal development in Language Development, Social Skills and Behavioral Repertoire.
Children and adults with autism typically have deficiencies in verbal and non-verbal communication, social interactions, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking) unusual responses to people or attachments to objects and resist any changes in routines. In some cases, aggressive and/or self-injurious behavior may be present.
It is conservatively estimated that nearly 400,000 people in the U.S. today have some form of autism. Its prevalence rate now places it as the third most common developmental disability - more common than Down's Syndrome. Yet the majority of the public, including many professionals in the medical, educational, and vocational fields are still unaware of how autism affects people and how to effectively work with individuals with autism.
Applied Behavior Analysis / Discrete Trial Therapy (ABA/DTT)
is an intensive one-on-one
behavioral intervention program for children with autism spectrum
disorders. ABA/DTT is often
referred to as “Lovaas Therapy” due to the fact that it
was Dr. O. Ivar Lovaas of UCLA and his
colleagues who published the preeminent study in the field of
ABA/DTT and treating children with
autism documenting the efficacy of early intensive behavioral
intervention in 1987. The authors of
the study reported that 47% of the children who received
treatment in the clinical model achieved
normal intellectual functioning levels and were educated in
regular education classrooms without
any supports. Since the publication of the 1987 study,
other researchers in the field of autism
treatment have studied and documented the efficacy of ABA/DTT
programs. Also, other clinical
sites in the United States and Europe are in the process of
trying to replicate the findings of the 1987
study.
Whether or not one chooses to refer to the therapy as ABA/DTT or
Lovaas, the fact remains that the programs are based upon the
assumption that appropriate skills “ranging from rudimentary
self-care
tasks to complex skills such as interactive social language, can
become permanent parts of a child’s
repertoire if they are broken down into components that the child
can handle, taught well enough,
learned early enough, and practiced consistently enough”
(Maurice et.al. 1996). Early intensive
behavioral programs center around the fact that the therapy is
much more than correcting behavior.
ABA/DTT “entails a comprehensive program for teaching skills
across all domains” ranging from
basic self help skills to the more complex social interaction
skills (Lovaas 1987). ABA/DTT
programs are able to teach increasingly difficult skills to a
child by presenting “a set of teaching
steps, very similar to those employed for normal children, but
certain features are temporarily
exaggerated and the teaching process is slowed down”
(Lovaas 1987). The discrete trial approach
teaches children with autism through a process of breaking skills
down to minute or “discrete”
elements and teaching these discrete elements of information to
the child using positive
reinforcement. Eventually, the children who achieve optimum
benefits from the treatment develop
the skills necessary to learn from their environment naturally
and do not require special education
supports and services.
Numerous studies in peer review journals document that early
intensive behavioral intervention can
result in hitherto unprecedented outcomes for young children with
autism spectrum disorders
(Maurice et.al. 1996). The 1987 Lovaas study illustrates
that 47% of children who received early
intensive behavioral intervention attained normal cognitive and
intellectual functioning and were
able to complete first grade with typical peers and without
special education supports (Lovaas
1987). A follow up study on the children who comprised the
47% revealed that they maintained
their gains into adulthood and were indistinguishable from their
peers.
Given the entire range of therapeutic options that face parents when deciding what options will best address their child’s needs, ABA/DTT intervention is the single most effective approach supported by controlled studies. There are many treatment options, however, early intensive behavioral intervention is supported by data rather than anecdotal evidence.
It is should be noted, however, that intensive behavioral
intervention is by no means a “cure” for
autism. No amount of behavioral therapy can cure the
underlying and heretofore unknown etiology
of autism. Intensive behavioral intervention is effective
in remediating many symptoms of autism
thereby recovering children in that their behavior may become
“indistinguishable from their peers.”
ABA/DTT is an intensive therapy that requires a tremendous
amount of resources, emotional
energy, time, and money. It is important to research the
therapy as much as possible to decide if it is
right for your child. Parents researching this treatment
option should network with other families
who have their children enrolled in a program. Several
families in the Fargo Moorhead area allow
other parents to observe a therapy session and discuss the
treatment program from a parental rather
than clinical perspective.
There are several books that FMFEAT recommends for parents who
are considering ABA/DTT as a treatment option for a child with
autism.
There are Internet sites and mailing lists that present a
wealth of information for parents considering
ABA/DTT programming.
Me-List: a private e-mail list composed of parents an
professionals for the discussion of
ABA/DTT. To subscribe, e-mail Ruth Allen at
rallen@indyvax.iupui.edu explaining why you
want to be on the mailing list.
ABA/DTT is reported to be most effective when the child
receives 30-40 hours of one-on-one
therapy per week. Many families start the program at a
reduced number of hours and gradually
increase the number of therapy hours the child receives.
Initially, therapy is usually conducted
within the child’s home during the first year of
therapy. During the second year, many children
attend pre-school and continue to receive home therapy with a
reduced number of hours.
There are two main components that contribute to the cost of
ABA/DTT programs, assistant
behavioral therapists (ABT’s) and consultants.
1. ABT’s are the individuals who actually provide
the one-on-one therapy to the child. An average
of four to six ABT’s are needed to deliver 30-40 hours a
week of intervention. Using several
therapists prevents burn-out and helps the child generalize new
skills. Too many therapists,
however, is not recommended due to the need for consistency in
the program. Therapists should
work an average of 6-12 hours per week at the most.
ABT’s are often college students with a background in
psychology, speech, or a related field.
Generally, ABT’s have no prior training in ABA/DTT which
necessitates the families need to
provide professional training from a consultant which is
discussed below. ABT’s are generally paid
between $7-$11 per hour.
2. Consultants are an essential ingredient for a
successful in-home ABA/DTT program. Books and
research provide useful information and direction, but a
consultant provides individualized
programming for a child with autism. Consultants are also
necessary to thoroughly and effectively
train ABT’s and parents. Thorough hands-on training is
provided by a consultant during initial
start-up workshops as well as follow-up consultations.
Regularly scheduled follow-up consultations
are necessary to ensure a child benefits from updated programming
and to provide ABT’s ongoing
expert training.
Finding a consultant can be difficult for several
reasons. Many consultants have long waiting lists.
Parents must also make sure that a consultant has the adequate
training and an extensive
background working with children with autism spectrum
disorders. The following information will
guide parents through the process of locating and choosing a
consultant.
The first step in deciding what consultant to choose is to
compile a list of potential candidates or
organizations who provide workshop services. Parents should
call each of the candidates and
request to be placed on their waiting list. Being placed on
a waiting list does not commit parents to
hiring the consultant and it does not cost any money. Once
parents are on several waiting lists, they
should focus on researching the credentials of the potential
candidate or agency.
While researching credentials, parents should find out what
consultants are providing services to
other families who live in the area. Long waiting lists
sometimes do not apply to parents who
already live within a close proximity to other families who are
already receiving workshop services.
Once parents have this information, they can talk with the
consultant to discuss the possibility of
“tagging” on with other families in the area.
Networking with other families in the area also enables
parents to make a more informed decision when choosing a
consultant.
The following is a compilation of Lovaas Replication Sites or
sites that have received approval from Dr. Lovaas.
Inclusion on the list does not constitute endorsement or
guarantee of quality and legitimacy.
Site
Contact
Person
Phone/Fax
UCLA
Ivar Lovaas,
Ph.D.
(310) 825-2319/(301) 206-6380
Northwest Young
Autism
Project
Tristram Smith, Ph.D.,
Director
(509) 335-2522
The May Institute
(Boston)
Art Campbell, Ph.D., Vice
President
(508) 432-3478
Wisconsin Early
Autism
Project
Glen Sallows,
Ph.D.
(608) 288-9040/(608) 288-9042
Central Valley
Autism Project
(CA)
Mila Amerine-Dickens,
M.S.
(209) 613-7220/(209) 521-4794
Howard Cohen,
Ph.D.
Barcelona Autism
Project
Asun Puche,
M.A.
3493-418-4850/3493-418-4850
Akershus
College(Norway)
Svein Eikseth, Ph.D.,
Director 67-11-74-22/67-11-74-01
Pittsburgh Young
Autism
Project
Patti Metosky, Ph.D.,
Director
(412) 881-3902/(412) 881-3599
CSAAC (Maryland) Christine Caselles, Ph.D., Director (301) 762-1650/(301) 762-5230
University of
Houston
Gerald Harris, Ph.D.,
Director
(713) 743-8610/ (713) 743-8633
Iceland Autism Project Sigridur Jonsdottir, Ph.D., Director 354-554-5462/354-564-1753
Meredith College
(North
Carolina) Doreen
Fairbank,
Ed.D.
(919) 760-8080/(919) 760-0854
Converse College
(South
Carolina)
Spencer Mathews, Ph.D.
(864) 596-9132/(864) 596-9201
P.E.A.CH.
(United
Kingdom)
Diane Hayward
0208-891-0121
ex. 2257/0181-891-8209
Autism Research Center
(South
Carolina)
Barbara Metzger,
Ph.D.
(864) 260-9099
Minnesota Young
Autism
Project
Eric Larsson,
Ph.D.
(952) 238-9063/(952) 238-0863
New Jersey Institute
for Early
Intervention
Scott
Wright
(865) 616-9442/(865) 616-9454
Intensive Behavioral Intervention Clinic
(Ohio State
University)
Jacqueline Wynn,
Ph.D.
(614) 866-3473/(614) 866-4617
The following are some phone numbers for individuals who
provide workshop services.
A ** indicates that the organization is a Lovaas replication
site.
A * indicates that the consultant is currently being used by
other families in the Fargo Moorhead area.
Ivar Lovaas - Lovaas Institute for Early
Intervention - (310)358-6095
Young Autism Project UCLA - UCLA Dept. of Psychology -
(310)825-2319
**Carryl Navalta - The May Center - (617)648-9268
**Scott Wright - Bancroft, Inc. - (865) 616-9442
***Eric Larsson, Ph.D - Minnesota Young Autism
Project - (952) 238-9063/ (612) 296-8317
**Pattie Metosky - (412) 881-3902 - Services only in Pittsburgh
area
**Tristram Smith - Northwest Autism Project - (509)335-7750
**Glen Sallows - Wisconsin Early Autism Project - (608) 288-9040
Rutgers Center for Applied Psychology - (908)445-7778
Center for Autism and Related Disorders (CARD) CA - (818)995-4673
Building Blocks (formerly ECIC) - (212)606-2036
The Childhood Learning Center (TCLC) - 1-800-474-7788
Maisie Soetantyo - (415)343-7056
Center for Autism and Related Disorders (CARD) NY - (914)683-3833
Project Pace - (503)643-7015
Autism Partnership - (310)424-9293
Greg Buch - (510)938-4508
Partners in Therapy - (609)858-3673
Kenda Morrison - (913)842-8803
The Center for Early Education - (619)272-1708 or (619)272-2124
Setting up an ABA/DTT for a child with autism is a rigorous
process. To aid in the process, the
following steps are suggested:
1. Purchase and read the books described in Section 3.
2. Network with local families who have behavioral programs
already running for their children.
Fargo Moorhead Families for Early Autism Treatment (FMFEAT) can
provide contacts for families.
3. Attend FMFEAT support meetings.
4. Schedule an initial training workshop as soon as
possible.
5. If a family would like to begin therapy before the
initial training workshop, it is important to
watch other families training tapes and therapy sessions.
Training videos and resources are also
available from Different Roads to Learning at www.difflearn.com.
Medicaid waiver provides Medicaid coverage for individuals
with developmental disabilities.
Income is not a restriction for this program.
Some health insurance policies may cover some or all of the
costs of ABA/DTT. Some families
have had some costs of ABA/DTT reimbursed by health insurance so
be sure to read the fine
print of an insurance policy careful.
The Individuals with Disabilities Education Act (IDEA P.L.
94-142), entitles a child to a Free and
Appropriate Education. Numerous families around the country
have won court cases forcing school
districts to pay for the cost of ABA/DTT programming.
Supplemental Security Income (SSI) is a federal source of
support distributed to disabled
individuals based on income. For more information contact
your local Social Security office.
If a child qualifies for SSI, he or she may qualify for a state
disability Medicaid card. In order to
apply for a Medicaid card, contact the county department of human
services. It may be possible for
children to access behavioral intervention with a Medicaid card.
Autism / Pervasive Developmental Disorders
Assessment and Intervention
for Young Children (Age 0-3 Years), Sponsored by New York
State Department of Health
Early Intervention Program
Which is available on the web http://www.health.state.ny.us/nysdoh/eip/menu.htm
And also in the Mental Health: A Report of the
Surgeon General
Which is available on the web http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism
Maine Administrators of Services for Children with
Disabilities (MADSEC)
Autism Task Force Report
http://www.madsec.org/madsec/ATFReport.doc
The Oregon Department of Education
Autism Task Force Report
http://www.ode.state.or.us/sped/spedareas/autism/finalrec1.pdf
SPECIAL REPORT:
Dr. Lovaas Comments on the Mistaking of his Work
http://www.feat.org/lovaas/
COST-BENEFIT ESTIMATES FOR EARLY INTENSIVE BEHAVIORAL INTERVENTION FOR YOUNG CHILDREN WITH AUTISM--GENERAL MODEL AND SINGLE STATE CASE by John W. Jacobson, James A. Mulick and Gina Green http://www.business.gatech.edu/users/bmiddlebrook/ABAAnalysis.html
1) Behavioral Treatment and Normal
Educational and Intellectual Functioning in Young Autistic
Children
by O. Ivar Lovaas
http://www.featofnc.org/research1.html
2) Tristram Smith, Washington
State University
http://www.featofnc.org/research3.html
Anderson, Avery, DiPietro, Edwards, & Christian (1987). "Intensive home-based early intervention with autistic children." Education and Treatment of Children, 10, 352-366.
Birnbrauer & Leach (1993). "The Murdoch Early Intervention Program after 2 years". Behaviour Change, 10, 63-74.
Campbell, Schopler, Cueva, & Hallin (1996). "Treatment of autistic disorder." Journal of the American Academy of Child and Adolescent Psychiatry, 35, 134-143.
Fenske, Zalenski, Krantz, & McClannahan (1985). "Age at intervention and treatment outcome for autistic children in a comprehensive interevention program." Analysis and Intervention in Developmental Disabilities, 5, 49-58.
Harris, Handleman, Gordon, Kristoff, & Fuentes (1991). "Changes in cognitive and language functioning of preschool children with autism." Journal of Autism and Developmental Disorders, 21, 281-290.
Lovaas (1987). "Behavioral treatment and normal educational and intellectural functining in young autistch children." Journal of Consulting and Clinical Pscyhology, 55, 3-9.
McEachlin, Smith, & Lovaas (1993). "Long-term outcome for children with autism who received early intensive behvavioral treatment." American Journal on Mental Retardation, 97, 359-372.
Perry, Cohen, & DeCarlo (1995). "Case study: Deterioration, autism, and recovery in two siblings." Journal of American Academy of Child and Adolescent Psychiatry, 34, 232-237.
November 3, 1993
To Whom It May Concern:
This letter is intended to address the question of what
constitutes an appropriate therapeutic intervention for a child
diagnosed as autistic.
A consensus has emerged among scientific researchers and
practitioners that appropriate (not ideal) treatment contains the
following elements (e.g., Simeonnson, Olley, and Rosenthal,
1987):
1. A behavioral emphasis: This involves not only imposing
structure and rewarding appropriate behaviors when they occur,
but also applying some more technical interventions such as
conducting discrete trials, producing shifts in stimulus control,
establishing discriminations between SD's and S-deltas, and so
forth (Koegel and Koegel, 1988).
2. Family participation: Parents and other family members should
participate actively in teaching their child. Without such
participations, gains made in professional settings such as
special education programs, clinics, or hospitals rarely lead to
improved functioning in the home. (Bartak, 1978; Lovaas, Koegel,
Simmons, and Long, 1973).
3. One-to-one instruction: For approximately the first six months
of treatment, instruction should be one-to-one rather than in a
group because autistic children at this stage learn only in
one-to-one situations (Koegel, Rincover, and Egel, 1982). This
training need not be adminstered by degreed professionals, but
can be just as effective if delivered by people who have been
thorougly trained in the behavioral treatment of autistic
children, such as undergraduate students or family members
(Lovaas and Smith, 1988).
4. Integration: When a child is ready to enter a group situation,
the group should be as "normal" or "average"
as possible. Autistic children perform much better when
integrated with normal children than when placed with other
autistic children (Strain, 1983). In the presence of other
autistic children, any social behavior that they may have
developed usually disappears within minutes (Lovaas and Smith,
1988), presumably because it is not reciprocated. Mere exposure
to normal children, however, is not sufficient. The autistic
children require explicit instruction from trained tutors on how
to interact with their peers (Strain, 1983).
5. Comprehensiveness: Autistic children initially need to be
taught virtually everything. They have few appropriate behaviors,
and new behaviors have to be taught one by one. This is because
teaching one behavior rarely leads to the emergence of other
behaviors that were not directly taught (Lovaas and Smith, 1988).
For example, teaching language skills does not immediately lead
to the emergence of other language skills, such as pronouns.
6. Intensity: Perhaps as a corollary for the need for
comprehensiveness, an intervention requires a very large number
of hours, about 40 hours a week (Lovaas and Smith, 1988). Ten
hours a week is inadequate (Lovaas and Smith, 1988), as is twenty
hours (Anderson, Avery, Dipietro, Edwards, and Christian, 1987).
The majority of the 40 hours, at least during the first six
months of the intervention, should consist of remediating speech
and language deficits (Lovaas, 1977). Later, this time may be
divided between promoting peer integration and continuing to
remediate speech and language deficits.
I hope this information is helpful. If you have any questions,
please do not hesitate to contact me.
Sincerely,
Ivar Lovaas, Ph.D.
Professor of Psychology
Director, Clinic for the Behavioral Treatment of Children
Anderson, S.R., Avery, D.L., Kipietro, E., Edwards, G.L., and
Christian, W.P. (1987). "Intensive home-based early
intervention with autistic children." Education and
Treatment of Children, 10, 352-366.
Bartak, L. (1978). "Educational approaches". In M.
Rutter and E. Schopler (Eds.) Autism: A Reappraisal of
Concepts and Treatment (pp. 423-438). New York: Plenum.
Koegel, R.L., Rincover, A., and Egel, A.C. (1982). Educating
and Understanding Autistic Children. San Diego, College Hill
Press.
Koegel, R.L., and Koegel, L.K. (1988). "Generalized
responsivity and pivotal bvehaviors." Generalization and
Maintenance: Life-Style Changes in Applied Settings (pp.
41-65).
Lovaas, O.I. (1977). The Autistic Child: Language Development
Through Behavior Modification. New York: Irvington.
Lovaas, O. I., Koegel, R.L., Simmons, J.Q., and Long, J.S.
(1973). "Some generalization and follow-up measures on
autistic children in behavior therapy." Journal of
Applied Behavior Analysis, 6, 131-166.
Lovaas, O.I., and Smith, T. (1988). "Intensive behavioral
treatment for young autistic children." In B.B. Lahey and
A.E. Kazdin (Eds.), Advances in Clinical Child Psychology,
Volume 11 (pp. 285-324). New York: Plenum.
Simeonnson, R.J., Olley, J.G., and Rosenthal, S.L. (1987).
"Early intervention for children with autism." In M.J.
Guralnick and F.C. Bennett (Eds.), The Effectiveness of Early
Intervention for At-Risk and Handicapped Children (pp.
275-296). New York: Plenum.
Strain, P.S. (1983). "Generalization of autistic children's
social behavior change: Effects of developmentally integrated and
segregated settings." Analysis and Intervention in
Developmental Disabilities, 3, 23-34.
