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NOTE: Information contained herein is
furnished for informational purposes only and is not an
endorsement any of the methods/approaches
listed.
There is no one
treatment that is the silver bullet. ASD individuals
respond to many different treatments and it is largely
up to the primary caregiver to determine which are the
best match for the individual concerned. Below are the
guidelines provided by Autism Society of America to aid
in determining how and what to pursue.
- Will the treatment
result in harm to the individual;
- How will the
failure of the treatment affect my child and family;
- Has the treatment
been scientifically validated;
- Are there
assessment procedures specified;
- How will treatment
be integrated with/into functional life, social and
curriculum skills;
- Consider the
asking the following questions;
- How successful
has the program been for other children?
- How many
children have gone on to placement in a regular
school and how have they performed?
- Do staff
members have training and experience in working
with children and adolescents with autism?
- How are
activities planned and organized?
- Are there
predictable daily schedules and routines?
- How much
individual attention will my child receive?
- How is
progress measured? Will my child's behavior be
closely observed and recorded?
- Will my child
be given tasks and rewards that are personally
motivating?
- Is the
environment designed to minimize distractions?
- Will the
program prepare me to continue the therapy at
home?
- What is the
cost, time commitment and location of the
program?
Early intervention strategies used for children over 3
years of age have demonstrated measurable gains in IQ (SL
Harris & JS Handleman, Rutgers 2000). Early
intervention demonstrates successful long-term outcomes
as well as reduced costs associated with life long care
by 2/3.
Without
Intervention
- 45% will
require extensive government support,
including institutionalization or other 24/7 "line
of sight" care
- 45% will
require some government support in the
form of Medicaid, work programs and assisted living
- Only 10% will
not require government support as adults
With Intervention
(1:1 20 hrs/week proven program @ $20/hr; potential IQ
increase of 20 points meaning less support required and
readiness to learn achieved,)
- 10% will still
require extensive government assistance
as adults
- 55% will
require only minimal government assistance
at a lesser cost than adults without intervention
- 35% will not
require government assistance as adults
Jacobson & Mulick (2000); Jacobson (2000)
Applied Behavior
Analysis - ABA: Also known as Lovaas Therapy, the
focus of this treatment is rewarding of appropriate
behavior with the theory that rewarded behavior is more
likely to be repeated. Individuals under going ABA
usually work 30 to 40 hours a week with a trained
professional. Tasks are broken down into short simple
pieces, or trials that when successfully completed is
rewarded to reinforce positive behavior. Some
practitioners feel it is emotionally too difficult for
an individual with autism to work that intensively, that
it is too intrusive and that is does not prepare an
individual with autism to respond to new situations.
However, research shows that ABA provides consistent
results in teaching new skills and behaviors to autistic
individuals.
Treatment and
Education of Autistic and Related Communication
Handicapped Children - TEACCH: Developed at the
School of Medicine at the University of North Carolina
in the 1970's, it is a structured teaching approach
based on adapting the environment to the needs of the
autistic individual. The program is designed around the
individual's functioning level. Learning abilities are
assessed through the Psycho Educational Profile (PEP)
and then teaching strategies are designed to improve
areas identified as needing improvement, such as
communication, social and coping skills. Instead of
teaching specific skills or behaviors the approach is to
teach the individual to understand their environment and
provide appropriate responses. The TEACCH approach
searches for the source of the distress then teaches the
individual to communicate what the problem is in order
to get assistance.
Picture Exchange
Communication System - PECS: This approach was
designed to provide communication to those individual
not capable of verbal communication. Approximately 40%
of ASD individuals are non-verbal. PECS was developed by
the Delaware Autistic Program to acquire functional
communication skills. Using ABA based methods,
individuals are taught to exchange a picture for
something they want, whether item or activity.
Floor Time:
Designed by Dr. Stanley Greenspan, this treatment is a
great deal like play therapy. Greenspan describes six
stages of emotional development required for individuals
to develop a foundation for more advanced development -
scaffolding. Floor Time does not treat individuals as so
many treatments do, focusing on cognitive development
Rather Floor Time is designed to address emotional
development and is often used for an individual's
playtime in conjunction with other therapies such as
ABA.
Social Stories:
Developed by Carol Gray in 1991, Social Stories were
designed to teach ASD individuals social skills.
Addressing the ability to understand or recognize
feelings, points of view or plans of others. In
developing a visual comic strip type of story around a
situation that is not handled successfully by the
individual, the visual information is designed to
provide the individual with information to assist in
their understanding of the expected and/or appropriate
response.
Sensory Integration:
Many ASD individual suffer from sensory difficulties
and may display over or under reactive response and/or
lack the ability to integrate their senses. This therapy
is usually performed by a speech therapist or
occupational therapist and focuses on desensitizing the
individual and helping them to reorganize sensory
information. Before Sensory Integration Therapy is
performed, the therapist should observe the individual
in order to have a clear understanding of their
sensitivities.
Relationship
Development Intervention - RDI: Developed by Dr.
Steven Gutstein, RDI is a clinical program teaching
dynamic intelligence skills and motivation to
individuals on the spectrum. Using a systematic
step-by-step program, therapy is focused on building an
individual's motivation to interact socially in a manner
that allows for the acquired skills to be generalized.
RDI is used in schools
and at home in day to day activities and seeks to
strengthen pathways in the brain that may be
underdeveloped. RDI is tailor to the individuals need
and is not age specific. There is a rigorous
certification for therapists and people surrounding the
individual (teachers, parents) are taught how to use the
strategies for day to day use and reinforcement.
More Than Words –
The Hanen Program® for Parents of Children
with Autism Spectrum Disorder: More Than Words
is a unique, world-renowned program that gives parents
of children with autism spectrum disorder (ASD) and
other social communication disorders practical tools to
help their children communicate. The Hanen ®
approach is based on the belief that children learn best
in their everyday environments and that parents are the
best people to help them develop social and
communication skills. Classes include 8 group sessions,
a preprogram in-home assessment and 3 individual
videotape feedback sessions for each family. Classes are
taught by Hanen® certified speech-language
pathologists.
More Than Words
is designed to help parents of all children under the
age of six who are experiencing difficulties in social
interaction and communication. A diagnosis of ASD is not
required in order for families to enroll in and benefit
from this course. This course is designed to complement
and does not necessarily replace the need for other
therapies.
Gluten Free Casien
Free Diet - GFCF: Founded by two mothers of autistic
individuals, Karen Serrousi and Lisa Lewis, the GFCF
Diet has met with success for a subset of autistic
individuals thought to have serious allergies and/or
impaired digestive tracts with regard to the intake of
gluten and casien. The premise of the diet is that the
individual has a malfunctioning digestive tract, known
as leaky gut syndrome, that does not digest gluten and
casien properly, creating the opiates gliadorphin and
caseomorphin. These opiates are thought to contribute to
brain abnormalities and the diet was originally based on
the gluten free diet used for individuals affected by
Celiac Disorder (individuals with severe allergy
reactions to gluten). Specialized testing to measure
digestion and/or presence of gliadorphin and
caseomorphin can be obtained to aid in determining if
GFCF Diet is an approach that would yield benefit to an
autistic individual. There are those that believe that
these tests are not accurate and that this diet should
be a mainstay in an autistic individuals life,
regardless of test scores. It should be noted that
whatever the decision, it is generally accepted as a
safe intervention, daily nutritional requirements can be
met through this protocol. While considered by most
medical professionals as having only anecdotal evidence
to support its success and no scientific studies,
parents report that many autistic individuals have
displayed a decrease in undesirable behavior and health
improvements. It is recommended that if pursuing this
regimen that a professional familiar with this protocol
be consulted.
Specific
Carbohydrate Diet - SCD: This protocol is popular
with autistic individuals suffering from colon disorders
and again is centered on the premise of "leaky gut
syndrome". The goal of this diet is to heal the
intestinal tract and to rid it of bacterial and fungal
overgrowth and has proved a very successful dietary
intervention. It is recommended that if pursuing this
regimen that a professional familiar with this protocol
be consulted.
Vitamin & Supplement
Therapy: B vitamin therapy is probably the most
popular vitamin therapy, based in part studies conducted
showing that almost half of autistic individuals
participating in the therapy received benefit. B
vitamins play an important role in the production of
enzymes required by the brain. Benefits include decrease
in behavioral problems, improved eye contact, better
attention and improvements in learning. Essential Fatty
Acids (EFAs) supplementation, rich in vitamins A and D,
has also resulted in better eye contact and behavior.
Increasing vitamin C has been shown in clinical trials
to improve symptom severity and aids in brain function
and improves symptoms of depression and confusion.
DMG/TMG, B12 and B6 supplementation have been thought to
increase verbal communication in approximately 40% of
autistic individuals and aid in the methylation cycle in
the liver. In pursuing the addition of vitamin and
supplement therapy it is advised to consult a
professional familiar with these protocols and assessing
of nutritional status as it pertains to autistic
individuals, as some vitamins are also toxic when given
in increased amounts.
Chelation:
Chelation therapy is generally used when heavy metal
toxicity is suspected. Chelation is an approved
application for lead poisoning, however, as not been
approved as a treatment for ASD individuals. Chelation
should be done under the supervision of a medical
professional who has undergone DAN! Certification and/or
such certification or experience with chelation therapy.
Chelation is a medical procedure and, as with any and
medical procudure, has risks associated with the
procedure and should not be undertaken casually. ASD
individuals benefiting from this procedure are generally
those who have been overexposed to mercury via vaccines
and are genetically unable, or predisposed, to excrete
this toxin via normal bodily function. While there are
ASD individuals who have recovered from ASD using this
therapy, its success is varies from individual to
individual and more often improves health and behaviors
normally associated with ASD. Research in this regard is
ongoing.
Medications: A
wide variety of medications are available and frequently
used in autistic individuals to address behaviors and
symptoms. Serotonin re-uptake inhibitors have been
effective in treating depression, obsessive-compulsive
disorder and anxiety that can sometimes be present in
ASD. Anti-psychotic medications have been widely studied
and used with ASD individuals. Stimultants have also
been used to treat ASD individuals with reported effects
of increased focus. It is strongly recommended that a
professional familiar with the effects of these
medications on ASD individuals be consulted, as
behavioral side effects are often dose related and close
monitoring is required. There are professionals that
recommend lower doses of these medications, as there is
some evidence to suggest that ASD individuals are more
sensitive, perhaps due to the difference in brain
function, and require lower than recommended dosages of
these medications to be effective with fewer side
effects.
Secretin: A
hormone that produced in the small intestine and aids in
digestion. Success is varied and several studies have
found no statistical significant improvement in ASD
individuals receiving secretin. It should be noted that
many parents have reported improved sleep patterns, eye
contacts and language skills. It is strongly recommended
that a professional familiar with the effects secretin
and ASD individuals be consulted.
There are many
approaches that complement the above mentioned
approaches. Some of the more popular ones are listed
below:
- Art & Music
Therapy - appear to aid in sensory integration and
provide tactile, visual and auditory stimulation.
- Animal Therapy -
therapeutic riding programs provide both physical
and emotional benefits and improve coordination and
motor development as well as a sense of well-being
and increased self-esteem.
- Vision Therapy -
addressing vision and perception problems, this
approach also aids in an ASD individual's ability to
make sense of sensory information.
Insurance: Many
commercial (State of Colorado) health insurance carriers
have agreed to cover autism as a "congenital (birth)
defect". As mandated by the State of Colorado, coverage
would include 20 paid visits each of medically necessary
speech therapy (ST), occupational therapy (OT) and
physical therapy (PT).
Cigna and United
Healthcare, at the request of the Autism Society of
Colorado (ASC) and Family Voices of Colorado, agree that
they would no longer deny claims for ST, OT and PT on
the grounds that autism is not a congenital defect.
These groups join Anthem and Rocky Mountain Health Plans
who already cover autism as a congenital defect. Anthem
Blue Cross & Blue Shield of Colorado also cover mental
health and social skills therapy (RDI).
Important items to
note:
- while this change
affects the private, commercial plans of the
insurers listed here, you can use this example to
show another carrier that autism is indeed
considered a congenital defect by leading insurers
in Colorado;
- this only affects
private, commercial plans in Colorado. Other plans
such as federal or self-funded plans may use one or
more of these carriers to process their claims but
they are not commercial plans. Read your plan or
consult with your employer's human
resources/benefits staff if you are not sure;
- if you have been
denied coverage for the above services based on the
criteria that autism was not a "congenital defect"
in the past 12 months, you can re-submit your claim
along with a copy of this alert;
- please download
this
letter of support from the American Academy of
Pediatrics that was instrumental in bringing
about this important change.
If you continue to be
denied coverage by your insurer or if you have
questions, please contact:
Sarony Young at Family
Voices of Colorado
Phone: 1-800-881-8272
Email:
sarony@edenne.com
Website:
www.familyvoicesco.org
State Assisted
Funding of Treatment: Colorado has among the
strictest criteria to qualify for state services because
of the outdated definition of developmental disability
used requires that the individuals have a low IQ score
(70 or less), which equates mental retardation.The
current policy requires that IQ not be the sole
determining factor and that adaptive behavior/skills
also be looked at in determining eligibility, i.e. the
child can have an IQ higher than 70 if adaptive
behavior/social interaction/daily living skills are
substantially impacted by the cognitive disability.
Many families successfully appeal initial rejections on
this premise.
The Legal
Center for People with Disabilities and Older People, (a
non-profit that advocates for individuals with
developmental disabilities and other disabilities)
believes there remains a misinterpretation on the part
of community centered boards and the Department of Human
Services in how they determine eligibility for ASD
children with IQs over 70. Consequently, please contact
TLC for possible legal representation if your child has
been denied eligibility for developmental disabilities
services despite having been diagnosed with ASD and
having significant adaptive limitations. By
“significant adaptive limitations,” TLC means scores at
least two standard deviations below the mean in two or
more adaptive skill areas, as measured by a standardized
instrument like the Vineland Adaptive Behavior Scales:
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Communication
- Self-Care
- Home
Living
- Social
Skills
- Community
Use
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-
Self-Direction
- Health &
Safety
- Functional
Academics
- Leisure
- Work
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Please
note that if your child is outside the time frame
allowed to appeal a denial of eligibility for
developmental disabilities services, you will have to
reapply for services for your child, submit additional
information, and again be denied services before TLC can
consider representing your child on appeal. For
more information, contact The Legal Center at
303-722-0300.
Gateway to
services is managed through each community's Community
Centered Board (CCB). The CCB for Boulder and
Broomfield County is
Imagine!
The Although the new funding will not completely
eliminate the waiting lists for these Medicaid Waivers,
it significantly reduces it. If you think your child
might be eligible for one of these Waivers, or would
like more information, please contact Sandy Crowell at
720-272-8231, or e-mail her at
Scrowell@imaginecolorado.org
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C-HCBS Waiver -
The Children’s Home and Community Based Services
Waiver (formerly the Model 200 or Katie Becket
Waiver) is designed to provide Medicaid benefits in
the home or community to children with disabilities
or special health care needs who would otherwise be
ineligible for Medicaid due to excess parental
income and/or resources. Children must meet
care/supervision eligibility requirements. The age
range for this Waiver is birth through 17 yrs. New
resources for this Waiver are being released from
the State slowly, but all children who were on the
waiting list for this Waiver as of January 2005 have
been contacted to update information and get the
process rolling. Thanks to recent legislation,
there are additional funds available for children
who have been on the waiting lists for the
Children’s Home and Community Based Services
Medicaid Waiver (C-HCBS) and the Children’s
Extensive Support Waiver (CES).
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CES Waiver -
The Children’s Extensive Support Waiver is designed
for children with very significant developmental
disabilities or delays, behavioral and/or medical in
nature. If eligible for this Waiver a child will
receive Medicaid benefits and additional targeted
services and supports. The age range for this waiver
is also birth through 17. Imagine! staff are busy
contacting all families who have been waiting for
this Waiver to get paperwork updated so that
services can begin. Thanks to recent legislation,
there are additional funds available for children
who have been on the waiting lists for the
Children’s Home and Community Based Services
Medicaid Waiver (C-HCBS) and the Children’s
Extensive Support Waiver (CES).
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Autism Waiver -
The new Home and Community Based Waiver for children
with Autism will provide a team based approach to
early intervention for children birth – 6 identified
as having Autism. Legislation has been passed (SB –
177) and funding is available for this Waiver,
however the process for getting all of the pieces
figured out is proceeding slowly. At this time the
projected start date for the Autism Waiver is April
2007. To be eligible for this Waiver, children must
have a Medical diagnosis of Autism, be birth
to 6 years of age, and be eligible for Medicaid. The
Autism Waiver will only be able to fund 75 children
per year.
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Other CCB Funding:
It is always a good idea to check with your
county's CCB to see if they have funds for services
that are not regulated by the state. Imagine!
created a service for ASD individuals with IQ's over
70 from birth to 21 that is a parent directed
program that funds treatment of $9,500 spread over
three years. Sixty slots are currently funded and
there is a roll over of 20 new slots a year. For
more information, contact
Autism Society of Boulder County.
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