Landau-Kleffner syndrome

Skylar is a darling three year old, conceived after eight infertile years, and absolutely adored by his parents. His mother experienced some problems during pregnancy, but thankfully, her doctors pinpointed her low thyroid condition and were able to bring her fibromyalgia under control. Skylar's birth, however, was no easier than the pregnancy: his breech presentation required careful maneuvering. That first year of life presented its challenges, too: colic, reflux, and thrush. His constant screaming following his MMR vaccine was worrisome. Then came the repeated ear infections.

Finally, after endless rounds of antibiotics and several sets of ear tubes, Skylar seemed to thrive. He never crawled but walked so early that his parents were sure he was smart. He began picking up words quickly. Lately, however, Skylar has not added any words to his vocabulary. Sometimes he flaps his fingers in front of his eyes. Grandma noticed, when she visited over Thanksgiving, that he didn't always look at her. His parents are concerned.

"YOUR CHILD IS AUTISTIC"

Some families can recall the date and event when their toddlers went off-track, and even have home videos to document the change. For other families, like Skylar's, it is a more gradual process. As their anxiety increased, Skylar's parents sought expert advice. The diagnosis: it could be either pervasive developmental disorder (PDD) or autism.

"That is impossible," Skylar's parents thought, going through the sequential steps of denial, anger, and bargaining. Maybe he was just having a bad day when he went to see the specialist.

One reason that diagnosing autism is so confusing is that there are no physiological indicators, as there are for diabetes or cancer. Doctors may not always find the genetic markers they do with other disorders, because autism has many possible causes. It is only diagnosed when a child exhibits certain behavioral and psychological symptoms.

Other symptoms, like Skylar's, are immunological, dermatological, digestive, sensory, neurological, respiratory, cognitive, psychological, and developmental. If the symptoms are mild, a child might be diagnosed with attention deficit disorder. Moderate symptoms might result in a diagnosis of Asperger's syndrome. If severe, the diagnosis would be PDD or autism. These diagnoses make up what is known as the autism spectrum of disorders. (See Box 1)

The autism spectrum includes many labels: attention deficit disorder (ADD and ADHD), Angelman's, Asperger's, dyslexia, hyperlexia, Klinefelter's, Landau-Kleffner, obsessive compulsive disorder (OCD), PDD, Rett's, Tourette's, and autism. Children on the autism spectrum have an important commonality: a huge "total load."

Total load theory describes the cumulative effect of the individual assaults of each problem on the body as a whole. (See Box 2)

The cluster of symptoms that eventually leads to a diagnosis of autism arises when many systems of the body are stressed to their limits. Each child has a unique personal load limit, as does a bridge. When that limit is exceeded, a very complex constellation of problems results. Of course, not all children with these symptoms become autistic, but the more symptoms present, the more likely the child will be diagnosed with one of the labels on the continuum.

WHAT CAN A FAMILY DO?

After anger, bargaining, and depression subsided, Skylar's parents accepted his diagnosis. They then had to make some difficult choices. His doctors suggested traditional treatments, including medications, behavioral management programs, and a special school that provides intense early intervention in language, motor, and psychological areas. Undoubtedly, these treatments could help Skylar progress.

The problem with these usual interventions is that they focus on ameliorating symptoms rather than addressing the underlying causes of autism. Medications can alleviate behavioral and attentional symptoms, but often with undesirable side effects. Caring special education teachers offer individualized programming which may fail to allow the child's own sensory systems to learn how to modulate and integrate information. The lack of typical peers can also be problematic. Counseling programs help parents cope with issues such as picky eating and sleep problems but, again, don't speak to their causes.

Fortunately, exciting new treatments are currently receiving recognition. They focus on reversing problems related to reduced immune system dysfunction, overexposure to antibiotics and toxins, birth trauma, and reactions to immunizations. And now the literature is reporting children who are recovering from autism and PDD.

If you have a child with autism, like Skylar's parents, consider trying the following alternative therapies.

Dietary Modification -- Although initially challenging, efforts here alone can increase relatedness, attention, eye contact, and use of language -- immediately and markedly. That is what happened with Skylar.

Feed your child a diet that is:

* unrefined, varied, and free of artificial colors, flavors, additives, and naturally occurring salicylates (apple juice, because it contains salicylates, is to be avoided).

* gluten- and casein-free. If a child is eating a diet consisting primarily of wheat and dairy products, probably one or both of these must also be removed. Wheat gluten and casein from dairy products chemically form an opiate which puts some children into autistic-like states. Blood tests are available to see if this is the case with an individual child. (See Resources)

* yeast- , mold- , and sugar-free.

All of these non-food items and problematic foods increase the toxic load on bodily systems. In addition, the use of filtered water and natural household products is recommended.

Nutritional Supplementation -- Nutritional aids are essential to close the gap between what these youngsters eat and what their bodies need. Children like Skylar need more nutrients than typical children because of poor absorption, self-restricted diets, impaired ability to detoxify environmental chemicals and pollutants, and/or inherited nutrient deficiencies. Some supplements that have been found particularly helpful are vitamins A, B-6, calcium, and magnesium. Others showing promise are:

* Essential fatty acids, taken as the oils of evening primrose, cod-liver oil, or flaxseed;

* Amino acids, such as tryptophan, secretin, and GABA, all necessary for complete digestion;

* Antifungals and probiotics, such as Nystatin, Diflucan, and acidopholous, needed to reestablish intestinal integrity and to combat yeast overgrowth;

* Miscellaneous supplements, such as digestive enzymes and herbs that can also increase digestive function.

Healthcare providers can suggest customized formulas designed to fit a child's unique nutritional needs.

Homeopathy -- Many modern healthcare practitioners are using this 200-year-old approach to address health imbalances in children on the autism spectrum. Practitioners use natural substances that have the ability to cause symptoms in a healthy person, but cure the same symptoms in a sick person, by stimulating the body's own ability to heal itself. With this method, like cures like, whereas in traditional medicine, the opposite approach is used.

Immunotherapy -- Vaccine-induced autism is a tragic outcome of today's modern medicine. While the world has been saved from epidemics of dread diseases, some of today's children are being sacrificed. The discovery of measles virus in the ulcerated guts of children with autism has led to a variety of treatments that release children from the ravages of continuously high titers even years after the initial vaccine. For additional information on this treatment, contact the National Vaccine Information Center (NVIC). (See Resources)

Treatments That Affect Sensory Processing -- Children with autism process what they touch, smell, taste, hear, or see inefficiently. The sense of balance, located in the inner ear, may also be disturbed, due to the repeated ear infections many of these children experienced as babies. The balance system is essential to efficient processing of sound and movement, as well as vision and language. Remediation of impaired sensory processing is essential to lessen autistic symptoms. (See Resources for trained specialists in each area.)

* Sensory Integration Therapy, provided by specially trained occupational or physical therapists, enhances the child's ability to respond appropriately to all types of sensory input. Therapy consists of guided activities that challenge the body to make efficient, organized responses. A child is then able to pay attention, relate, sit still, organize language, and focus better.

* Auditory Integration Training (AIT) normalizes the way children with autism process sound. Some children are oversensitive, while others are undersensitive. The distorted messages sent to the brain impair the ability to focus on and give meaning to what is heard. Several types of AIT are available from specially trained practitioners. All utilize electronic equipment, headphones, and filtered music. This intervention stimulates the balance, movement, and auditory systems, as well as eye movements and digestion.

* Vision Therapy (VT) normalizes the way children with autism focus on and give meaning to what they see. Vision is not the same as eyesight.

It is a set of abilities, learned from birth, and acquired in tandem with movement. Having both eyes move together, align, fixate, and focus as a team enhances the ability to interpret and understand visual information. Skylar is one of 30 percent of children with autism whose eyes do not work together. Once this problem was remedied, his relatedness improved.

Many symptoms of autism have visual components. Visual dysfunction may result in poor eye contact and attention. A lack of binocularity could result in other autistic symptoms. Specially trained optometrists can prescribe a program of movement activities and use lenses and prisms to teach the eyes how to work more efficiently. Vision Therapy activities must be individualized for each child.

* Educational Kinesiology (E-K), also known as Brain Gym, enhances sensory function by using specially designed movement activities. (See For More Information)

* The Son-Rise Program is an intensive therapy based on a family's loving, trusting, respectful attitude. It encourages parents to follow a child's actions, while simultaneously directing him into an expanded world. (See Box 3)

Structural Therapies -- Many children, like Skylar, experienced a traumatic birth. Osteopathic physicians, health professionals trained in craniosacral techniques, massage therapists, chiropractors, and other bodyworkers can provide precise, gentle, restorative manipulative treatment. If structural dysfunction resulting from birth trauma is corrected early, neurological development can progress satisfactorily. Then, motor, sensory-motor, language, social-emotional, cognitive, and behavioral problems can be averted by establishing or restoring optimal anatomic-physiologic integrity. Structural therapies can particularly benefit children who have chronic ear infections.

MOVING TOWARD HOPE

Denial and depression have turned to hope for children diagnosed with autism or PDD. Parents are empowering each other to search for and discover remedies never before considered. Regional and national conferences abound with a focus on causes, not symptoms. Internet chat rooms and listservs allow the instant exchange of information and news of promising treatments.

Recovery from autism and PDD is now a possibility. Skylar will probably attend a regular preschool, not one for children with special needs. As his health improves, cognitive and social-emotional function will, too. His parents may have to change their diets and shop differently. Their lives will be full of therapy appointments and consultations with educational and health specialists. But what could be more satisfying than saving their child?

Box 1

AUTISM SPECTRUM OF DISORDERS

Box 2

Risk Factors for Autism Spectrum Disorders

1. Traumatic birth

2. Allergies in the family

3. Dark circles under the eyes ("allergic shiners")

4. Red ears or apple cheeks

5. Fibromyalgia, chronic fatigue, or low thyroid in the mother

6. Recurrent ear, sinus, or strep infections

7. Chronic, unexplained fevers

8. Respiratory problems, including asthma and bronchitis

9. Skin problems, including eczema and poor color

10. Digestive problems, including constipation, chronic diarrhea, or reflux

11. History of an extended immunization reaction

12. Sudden decline in function between 15 and 30 months

13. Yeast infections, such as thrush

14. Hyperactivity

15. Agitated sleep

16. Wild swings in mood and function

17. Self-injurious or violent behaviors

18. Regressive behavior after eating food with additives

19. Sensitivity to dyes, chemicals, perfumes, or medications

20. Craving for apple juice

Box 3

Son-Rise

The Option Institute's Son-Rise Program teaches both parents and professionals how to design and implement parent-directed, child-centered, home-based programs for their children with autism. Son-Rise emphasizes the importance of creating a relationship with the child as a basis for teaching skills. A unique aspect of Son-Rise is the focus placed on attitude -- a nonjudgmental and loving attitude is the foundation of the program and considered essential to facilitate the child's development.

The Options Institute was founded by Barry Neil Kaufman and Samharia Lyte Kaufman, who have spent over 25 years "rebirthing" their son Raun from supposedly "incurable" autism. At 18 months, Raun was mute, totally withdrawn from human contact, self-stimulating, and tested below 30 on the IQ scale. Barry Neil and Samharia worked with their son 12 hours a day, seven days a week, for over three years. At the end of that time, Raun was not only cured of autism, but he had evolved into a highly verbal, extroverted, loving, and brilliant young boy who demonstrated a near-genius IQ and bore no traces of his earlier condition. Raun recently graduated from an Ivy League university with a degree in biomedical ethics, and is now a teacher and spokesperson for the Options Institute.

The Kaufmans wanted to help other families help their children, and so in 1983 they founded the Options Institute, which offers in-depth programs for families. In addition to an intensive, one-week program, advanced training programs, and start-up programs, Son-Rise conducts other support services for families who have attended one of their programs. The Son-Rise Program has been disseminated throughout the US and across the world.

Barry Neil Kaufman is the author of nine books, including Son-Rise and Son-Rise: The Miracle Continues. Deepak Chopra has said the Kaufmans' work is "the science of love, compassion, and insight which will transform the world." Coretta Scott King says their work "affirms the unlimited potential of the human spirit." For more information about the Son-Rise Program, contact the Options Institute at 2080 S. Undermountain Road, Sheffield, MA 01257; 413-229-2100; or visit their website at www.option.org or e-mail them at sonrise@option.org.

-- Rozella Kennedy

Notes

[1.] L. Wecker et al., "Trace Element Concentrations in Hair from Autistic Children," Journal of Mental Deficiency Research 29 (1985): 15-22.

For More Information

Apothecary Pharmacy. Pathways Custom Compounding Pharmacy. 800-869-9160. www.the-apothecary. com. Produces vitamins and prescriptions without colors, flavors, or fillers.

College of Optometrists in Vision Development (COVD). 243 N. Lindbergh Boulevard, Suite 310, St. Louis, MO 63141-7851. 888-COVD770. www.covd .org. Provides referrals to optometrists who do vision therapy.

Edu-Kinesthetics, Inc. PO Box 3395, Ventura, CA 93006-3395. 888-388-9898. www.braingym.com. Provides information about Brain Gym and E-K.

Feingold Association of the United States (FAUS). PO BOX 6550, Alexandria, VA 22306. 800-321-FAUS. www.feingold.org. Provides information on diets without colors, flavors, or preservatives.

The Gluten Free Pantry. www.glutenfree.org. Recipes and resources for a gluten-free diet.

The Great Plains Laboratory. 9335 West 75th Street, Overland Park, KS 66204. 913-341-8949. www.greatplainslaboratory.com. Conducts blood and urine tests for yeast problems.

National Center for Homeopathy. 801 N. Fairfax Street #306, Alexandria, VA 22314. 703-548-7790.

National Vaccine Information Center (NVIC). 512 W. Maple Avenue #206, Vienna, VA 22180. 800-909-SHOT. www.909shot.com.

Society for Auditory Integration Training (SAIT). C/o Center for the Study of Autism, 9725 S.W. Beaverton Hillsdale Highway #230, Beaverton, OR 97005. www.teleport.com/sait.

Resources (see also resources at the end of Bernard Rimland's article)

Ayres, A. J. Sensory Integration and the Child. Western Psychological Press, 1985.

Kaplan, M., B. Rimland, and S. Edelson. "Strabismus in Autism Spectrum Disorder. Focus on Autism and Other Developmental Disabilities." 14, no. 2 (1999):101-105.

Rimland, B. "Candida-Caused Autism." Autism Research Review International 2, no. 2 (1985).

Rimland, B. "Auditory Integration Training Update: Scientific Clues, FDA Obstruction." Autism Research Review International 9, no. 4 (1995): 2.

Rimland, B. "Major Medical, Political Developments Fuel Furor over Vaccines." Autism Research Review International 13, no. 3 (1999).

Rose, M., and N. Torgeson. "A Behavioral Approach to Vision and Autism." Journal of Vision Development 25 (1994): 269-275.

Scharre, J. E., and M. P. Creedon. "Assessment of Visual Function in Autistic Children." Optometry and Vision Science 69, no. 6 (1992): 433-439.

Schmidt, M. A. Smart Fats: How Dietary Fats and Oils Affect Mental, Physical and Emotional Intelligence. Frog, Ltd., 1997.

Schulman, R. "Optometry's Role in the Treatment of Autism." Journal of Vision Development 25 (1994): 259-268.

Shaw, W. Biological Treatments for Autism and PDD. Great Plains Laboratory, 1998.

Ullman, J. and R. Ritalin-Free Kids: Safe and Effective Homeopathic Medicine for ADD and Other Behavioral and Learning Problems. Prima Publishing, 1996.

Wakefield, A. "Ileal-Lymphoid-Nodular Hyperplasia, Non-specific Colitis, and Pervasive Developmental Disorder in Children." The Lancet 352, no. 9123 (1998): 234-235.

Warren, R. P. et al. "Immune Abnormalities in Patients with Autism." Journal of Autism and Developmental Disorders 16 (1986): 189-197.

For more information on autism, see the following article in a past issue of Mothering: "The Joy of 'Special' Parenting," no. 43.

Patricia S. Lemer, M Ed, is a nationally certified counselor and an educational diagnostician in private practice in Bethesda, Maryland. She is a co-founder and the executive director of Developmental Delay Resources (DDR), a nonprofit membership organization that serves as a clearinghouse of resources for parents and professionals. DDR publishes a quarterly newsletter and networking directory. To subscribe, call 301-652-2263 or visit www.devdelay.org.

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