Listening to Parents

It is interesting that the evidence of gut disease in children with autism is well known to parents of children with autism mainly because of the research of Dr. Andrew J. Wakefield in 1998.

He listened to them and now researchers everywhere are checking out the evidence of gut disease in autism. Since 1998 additional research has become available about bowel disease in autism. In fact, symptoms of gut abnormalities were recorded and published by Dr. Leo Kanner as documented in Autism (Oller, & Oller, 2010) in the following lines:

Case 1, according to Kanner, showed symptoms of abnormal gut problems. His father wrote: “Eating has always been a problem with him. He has never known a normal appetite. Seeing children eating candy and ice cream has never been a temptation to him” (Kanner, 1943, p. 216). At a later stage, the child still showed some abnormal symptoms with respect to food consumption. He was described as chewing on paper and putting food in his hair (p. 235). In September 1939, near his sixth birthday, his mother wrote: “He continues to eat wash and dress himself only at my insistence” (p. 221). Seven months later, in March 1940, she commented that “he feeds himself some better” (p. 221), suggesting that his eating habits were still not normal.

I will interject here that we now know who Case 1 is. He is still living and is, according to Olmsted & Blaxill (2010), not only the first child who was diagnosed, but also the first who was substantially recovered from severe “infantile” autism.

Case 2, when diagnosed at age 6, was described as having “large and ragged tonsils” (p. 224), which can be an indication of frequent acid reflux (see Stapleton & Brodsky, 2008).

Case 3 evidently had problems with elimination because his mother reported that “at the age of 3 weeks” she “began to ‘train’ him” by “giving him a suppository every morning ‘so his bowels would move by the clock’” (p. 224). It is reported that “following smallpox vaccination at 12 months . . . had an attack of fever and diarrhea . . . “ (p. 224) and that he had “large tonsils and adenoids, which were removed on February 8, 1941″ at the age of 3 years and four months (p. 225).

Case 4 is said to have”vomited a great deal during his fist year, and feeding formulas were changed frequently with little success” (pp. 226-227). His “tonsils were removed when he was 3 years old” (p. 227).

Case 5 is said to have “nursed very poorly and was put on bottle after about a week. She quit taking any kind of nourishment at 3 months. She was tube-fed five times daily up to 1 year of age. She began to eat then, thought there was much difficulty until she was about 18 months old” (p. 228). At camp she “slid into avitaminosis and malnutrition” (p. 228).

Case 6, Virginia, seems to have had no outstanding gut problems.

Case 7 “vomited all food from birth through the third month. Then vomiting ceased almost abruptly and, except for occasional regurgitation, feeding proceeded satisfactorily” (p. 231).

Case 8 had problems during the first two months: “Feeding formula caused considerable concern” (p. 233) but he ate well after that. Still, later on it is reported that “when infantile thumb sucking was prevented by mechanical devices, he gave it up and instead put various objects into his mouth. On several occasions pebbles were found in his stools. Shortly before his second birthday, he swallowed cotton from an Easter rabbit, aspirating some of the cotton, so that a tracheotomy became necessary. A few months later, he swallowed some kerosene ‘with no ill effects’” (p. 233).

Case 9, was described by his mother as having “developed an obsession about feces, would hide it anywhere (for instance, in drawers), would tease me if I walked into the room: ‘You soiled your pants, now you can’t have your crayons!’ . . . still not toilet trained. He never soils himself in the nursery school, always does it when he comes home. The same is true of wetting. He is proud of wetting, jumps up and down with ecstasy, says, ‘Look at the big puddle he [Kanner’s italics] made’” (p. 236).

Case 10 was described by his father who said: “The main thing that worries me is the difficulty in feeding. That is the essential thing . . . During the first days of his life he did not take the breast satisfactorily. After fifteen days he was changed from breast to bottle by did not take the bottle satisfactorily. There is a long story of trying to get food down. We have tried everything under the sun. . . . He sucks his thumb and grinds his teeth quite frequently. . .” (p. 237). At one of his visits to Kanner, “mild obsessive trends were reported, such as pushing aside the first spoonful of every dish” (p. 238).

Case 11, Elaine, at the age of 2 years went to nursery school where she “drank the water and ate the plant when they were being taught to handle flowers” (p. 239). There were no other bizarre symptoms of any eating or digestive disorder. (from Oller & Oller, 2010, pp. 2-3)

The research now shows, consistent with the analysis of Kanner’s original 11 cases, that 70% to 80% of individuals already diagnosed with autism have significant bowel disease (Horvath, et al., 1999; Horvath & Perman, 2002; Jepson & Johnson, 2007, p. 87).

Horvath, K., Papadimitriou, J. C., Rabsztyn, A., Drachenberg, C., & Tildon, J. T. (1999). Gastrointestinal abnormalities in children with autistic disorder. Journal of Pediatrics, 1(5), 559–563.

Horvath, K., & Perman, J. A. (2002). Autistic disorder and gastrointestinal disease. Current Opinion in Pediatrics, 14(5), 583–587.

Jepson, B., & Johnson, J. (2007). Changing the course of autism: A scientific approach for parents and physicians. Boulder, CO: Sentient.

More recently, de Magistris, et al. (2010) found that the rate of gut permeability (popularly known as “leaky gut syndrome”) in persons diagnosed with autism (in their study) was 7 times greater than in normals without autism and was 5 times greater in the first-degree relatives of persons with autism than in normal controls.

de Magistris, L., Familiari, V., Pascotto, A., et al. (2010). Alterations of the intestinal barrier in patients with autism spectrum disorders and in their first-degree relatives. Journal of Pediatric Gastroenterology and Nutrition, 51(4), 418-424.

Also, see Campbell et al. (2009) who found a high rate of familial gastrointestinal problems in families of persons diagnosed with autism.

Campbell,  D. B., Buie, T. M., Winter, H., Bauman, M., Sutcliffe, J. S., Perrin, J. M., & Levitt, P. Distinct genetic risk based on association of met in families with co-occurring autism and gastrointestinal conditions. Pediatrics, 123(3), 1018-1024.

And, what about the children originally seen by Wakefield and colleagues with respect to the study published in Lancet 1998? Did they or did they not have gut disease? The following videos include interviews with some of the parents involved and the reading of a letter signed by 8 of the 12 families and addressed tot he British Medical Council:

[youtube=http://www.youtube.com/watch?v=DeMw23aCczw]

[youtube=http://www.youtube.com/watch?v=J80_Xa9ZU24&feature=related]

[youtube=http://www.youtube.com/watch?v=eU4jqwzJc_Y&feature=related]

[youtube=http://www.youtube.com/watch?v=pj0CUQXcLV4&feature=related]

[youtube=http://www.youtube.com/watch?v=dG7aIbsfDkk&feature=related]

[youtube=http://www.youtube.com/watch?v=jax6wne_PgI&feature=related]

Or for the whole video in one piece, here is the web site documenting what the parents are actually saying.

http://www.viddler.com/player/7226befc/

In the following interview with Alex Jones, Wakefield explains why listening to parents is important.

[youtube=http://www.youtube.com/watch?v=a4PeLtH6RWY]

Comments are welcome as always.