What I Would Do If I Were a Parent of An Autistic Child: Recommendations Based on 25 Years of Research Experience
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.
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.
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:
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.
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.
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.