What I Would Do If I Were a Parent of An Autistic Child: Recommendations
Based on 25 Years of Research Experience
Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon
Over the past 25 years I have been fortunate to conduct research in several
areas of autism and to collaborate with many of the leading pioneers, including
biomedical (Bernard Rimland), behavior/education (Ivar Lovaas), and sensory
(Temple Grandin, Guy Berard, Lorna Jean King, Melvin Kaplan, Helen Irlen). These
experiences have helped me broaden my understanding of what can be done to help
these individuals.
One of the most difficult and stressful times for a family is when they first
learn that their child has autism. Parents are then faced with a critical and
life-determining question: What should I do to help my child? The decision on
which treatments to implement (and not to implement) will likely determine the
child's prognosis. I have outlined the steps that I would take if I were a
parent of an autistic child.
Action Plan
First, I would write to the Autism Research Institute (ARI, 4182 Adams Ave.,
San Diego, CA 92116; fax: 619-563-6840) and request their free parent packet.
Much on this information is on their website:
www.AutismResearchInstitute.com
The packet contains a wealth of information that describes ways to understand
and to treat many problems associated with autism. It includes a sample issue of
the quarterly ARI newsletter, the Autism Research Review International (ARRI).
Subscribing to the ARRI is the best way to keep informed ($18/year).
I would also contact the local chapter of the Autism Society of America (ASA)
in my area. The autism chapter will likely provide valuable resources and
contact numbers in the community and throughout the state. In addition, I would
attend at least one parent support group to see what they have to offer. ASA
maintains a listing of most autism chapters throughout the country (toll-free:
800-3-AUTISM).
Important note: Before contacting my health insurance carrier, I would first
read the policy. Many policies do not cover treatment services for autistic
individuals. These insurance companies may reimburse therapies if the therapy is
not specifically aimed at treating autism and if the insurance company is
not aware that the child has autism. For example, if the child has a speech
problem, the insurance company may pay for speech therapy.
Intervention
There are two major approaches that I would pursue simultaneously; and the
earlier these interventions are started, the better the child's prognosis.
The first approach involves determining whether the child has health
problems. These problems may include a critical need for essential vitamins and
minerals (e.g., vitamin B6 with magnesium, DMG, vitamins A and C),
gastrointestinal problems (e.g., leaky gut, yeast overgrowth, viral infection),
high levels of heavy metals and other toxins (e.g., mercury, lead), food
sensitivities and allergies, and more. The majority of autistic individuals have
one or more of these problems.
The Defeat Autism Now! (DAN!) approach to autism addresses these biomedical
issues. ARI distributes a diagnostic and treatment protocol titled Biomedical
Assessment Options for Children with Autism and Related Problems. A list of
practitioners who understand and know how to treat such medical conditions can
be obtained by writing to ARI or visiting their website
www.AutismResearchInstitute.com Of the many treatments described in the
protocol, I would first give the child vitamin B6 with magnesium, then
dimethylglycine (DMG), and then the gluten-/casein-free diet.
Comment on drugs. Some pediatricians prescribe drugs to autistic
children even though the Food and Drug Administration has not approved any drugs
for treating autism. Additionally, almost every drug has harmful side effects. I
sometimes hear reports of some benefit with Risperidal, Prozac, and Ritalin.
However, it is very likely that even greater improvements will occur following
other, non-drug, biomedical treatments (see
ARI's publication: 34Q).
If the child talks very little or not at all, I would have the child tested
to see if he/she has seizures. Seizure activity may affect speech production. An
electroencephalogram (EEG) measures brain wave activity, and it may be able to
detect seizure activity. If the child does have seizures, I would use non-toxic
nutritional supplements to treat the seizures, such as vitamin B6 and DMG.
The second approach is behavior/education. Applied behavior analysis (ABA) is
a well-documented and effective teaching method for many autistic children. This
method involves 1-on-1 instructional sessions and utilizes educational tasks
that have been developed specifically for autism. Teaching Individuals with
Developmental Delays: Basic Intervention Techniques, written by O. Ivar
Lovaas, is an excellent resource and describes, in detail, how to implement this
method.
After the biomedical and behavior/education interventions are well underway,
I would direct my attention to the child's sensory problems. Many autistic
individuals suffer from a hypersensitive or hyposensitive sensory system. These
problems may involve hearing (e.g., sound sensitivity, appears to be deaf),
vision (e.g., light sensitivity, visual attention problems), tactile (e.g.,
sensitivity to touch, insensitivity to pain), vestibular (e.g., craves or
resists certain movements, such as swinging), proprioceptive (e.g., excessive
jumping), smell (e.g., sensitivity or insensitivity to odors), and taste (e.g.,
picky eater, pica behavior). There are several interventions that can reduce or
eliminate many of these problems, such as Auditory Integration Training
(hearing), vision training and the Irlen lenses (vision), and sensory
integration (vestibular/tactile/proprioceptive).
The three treatment approaches outlined above complement one another.
Autistic individuals often become more attentive and more motivated to learn
soon after treating their biomedical and sensory problems. A child may do well
with only one these approaches, but the combination can lead to amazing results,
and even recovery for some children.
The next step. It is also worth looking into other effective
interventions for autism, such as structured teaching, social stories, the
Greenspan method, Picture Exchange Communication System (PECS), and Grodin's
relaxation/visual imagery techniques.
Family issues. Raising an autistic child can be very stressful to the
entire family. Siblings sometime feel ignored because so much of the parents'
attention is directed toward the autistic child. Divorce is quite common among
families with an autistic child. Additionally, relatives and close friends may
distance themselves. It is important to be aware of these dangers and address
them if they should occur.
Finally, it is important to be a strong advocate for the child. Many
professionals are aware of the symptoms associated with autism. However, they do
not know how to treat them. Information is a powerful tool. I would keep all of
the child's documents and diagnostic test results in one well-organized folder.
Whenever possible, I would provide relevant articles and other informational
materials to therapists and other professionals who work with the child. Like
many other parents of autistic children, I would likely wind up teaching
professionals how to work with the child.
It is important to realize that autism is treatable, and there are many
resources available, such as books, newsletters, Internet websites, and
conferences. I would start with the following resouces:
Books
General Resources Autism Research Review International newsletter (quarterly). San
Diego: Autism Research Institute. Gerlach, E.K. (2000).Autism Treatment Guide. Second Edition.
Arlington, TX: Future Horizons. Hamilton, L.M. (2000).Facing Autism. Colorado Springs, CO:
Waterbrook Press.
Biomedical Approach McCandless, J. (2002).Children with Starving Brains: A Medical
Treatment Guide for Autism Spectrum Disorder. Paterson, NJ: Bramble Books. Pangborn, J.P., & Baker, S. (2002).Biomedical Assessment Options
for Children with Autism and Related Problems. San Diego: Autism Research
Institute. Seroussi, K. (2000).Unraveling the Mystery of Autism and Pervasive
Develop- mental Disorder. New York: Simon & Schuster.
Behavior/Education Leaf, R., & McEachin, R. (1999).A Work in Progress: Behavior
Management Strategies and a Curriculum for Intensive Behavioral Treatment of
Autism. New York: DRL Books. Lovaas, O.I. (2002).Teaching Individuals with Developmental Delays:
Basic Intervention Techniques. Austin, TX: Pro Ed.
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"