WHAT I WOULD DO IF I WERE
A PARENT OF AN AUTISTIC CHILD:
Recommendation 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
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
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.
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.
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:
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.
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),
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
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
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 one-on-one
instructional sessions and utilizes educational tasks that have
been developed specifically for autism. Teaching Individuals
with Developmental Delays: Basic Intervention Techniques, written
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
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.,
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
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
Exchange Communication System (PECS), and Groden's relaxation/visual
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
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
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
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
Seroussi, K. (2000). Unraveling the Mystery of Autism and Pervasive
Develop- mental Disorder. New York: Simon & Schuster.
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.
General Resources - Autism Society of America
Biomedical Approach - Defeat Autism Now! (DAN!) - AutismResearchInstitute.com
Behavior/Education - Families for Early Autism Treatment - www.feat.org
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