Kids with autism need intensive food interventions
References:
Ahearn, W.H. et al. (1996). An Alternating Treatments Comparison of Two Intensive Interventions for Food Refusal. Journal of Applied Behavioral Analysis, 29: 3, 321-332.
Dr. Morris, C.R., and Dr. Agin, M.C. (2009). SAAM: Characterization of a Neurodevelopmental Phenotype that Responds to Omega 3 and Vitamin E Supplementation. Alternative Therapies, 15:4, 34-43.
1. Medical and Metabolic testing for source of feeding problems. With a Gastroenterologist, rule out reflux and GERD as inflammatory factors common in autism (Dr. Buie et al., AAP 2010). Dr. Morris found the following metabolic results in 187 children (65% with autism) with verbal apraxia (speech problems): 83% had GI symptoms, 88% had food allergies (most frequently gluten and milk), 77% had low carnitine, 68% had abnormal celiac panel with high antigliaden (gluten) IgG antibodies, 100% children tested had gluten sensitive HLA genotype (10 children were tested for this gene), 8/11 boys tested positive for fat malabsorption, several children tested positive for vitamin D and zinc deficiencies. Children given vitamin E and fish oil supplements dramatically improved in speech, behavior, and other symptoms. DO NOT ASSUME FEEDING PROBLEMS ARE “SENSORY DEFENSIVENESS” OR “TEXTURE PROBLEMS.”
2. Prepare for feeding therapy. Find a therapist with successful experience. Estimate a day of intensive therapy for each year of the child’s age. Contrive a motivating operation for eating by restricting child from eating food outside of meal times. Restrict from drinking liquids 60 minutes prior to and after meal times. Provide a high calorie nutritional drink at the end of the day. Consult with a medical professional to ensure proper daily caloric intake. Use foods from all food groups in therapy in the desired form (pureed or diced). Setting should have chair, table, plate, bowl, utensils, cup. Set changing criteria goals such as: Day 1-- touching food to lips, Day 2--chewing with physical guidance, Day 3--chewing without physical guidance, Day 4--swallowing, Day 5—using utensils independently. Prepare for positive reinforcement of successful trials by collecting preferred items and activities.
3. Plan for typical responses:
Acceptance: When child accepts food according to the day’s criteria within 5 seconds, then immediately allow access to preferred item and social interaction (praise!) for 15 seconds.
Refusal: When child does not accept food, use physical guidance (with thumb to pull child’s chin down to open mouth).
Expulsion: Decide to re-offer the food, or offer another spoonful of the same food.
Negative Vocalizations: Ignore crying, screaming, whining.
Disruptions: Reset any items in attempts to remove items from table.
Self-Injurious Behaviors: Block any attempts to injure.
4. Methods: Non-removal of the spoon and physical guidance. Both interventions prevent escape from eating and result in 65%-95% acceptance of foods between 10-30 sessions (meals). Parents preferred physical guidance due to quicker meals and less disruptive behavior, although it is more intrusive. Expulsion decreased from 85% to 10% after ten sessions in the Ahearn study. Children had two to five meals daily, depending on their meal volume.
In non-removal of the spoon, say “You have to stay in the chair until you take all the bites.” Present four different foods, one from each food group. Bring spoonful to mouth, say “Billy, open,” and keep spoon at mouth until it is accepted or 5 seconds. Acceptance results in preferred activity for 15 seconds. Refusal results in no preferred activity of social interaction for 15 seconds until the next trial begins.
In physical guidance, say, “If you do not take a bite, I will have to help you.” Present four different foods, one from each food group. Bring spoonful to mouth, say “Billy, open,” and keep spoon at mouth until it is accepted or 5 seconds. Acceptance results in preferred activity for 15 seconds. Refusal results in immediate physical guidance to open mouth and accept food. If expulsion occurs during preferred activity, then activity is stopped and expelled food is re-presented.
5. Motivate yourself to persevere for the long term for the physical, cognitive, and social benefit of your child. This is difficult, but not impossible. When food seems punishing to a child, punishment techniques will not work to motivate a child to eat. Positive practice and positive reinforcement works every time—your child is not the exception.
Copyright 2012 P. Long
Wednesday, March 14, 2012
Toilet Training a Child with an Intellectual Disability
Summary of the Azrin-Foxx method
Reference: Azrin and Foxx (1974), Toilet Training in Less Than a Day, Pocket Books, New York: New York.
METHOD. This methodology was developed by psychologists who had successfully toilet trained 95% of adults and 100% of children with intellectual disabilities in two research studies. The time frame averaged three hours for a typical child and three days for a moderate disability. The method relies on positive reinforcement (attention, praise, hugs, snacks, drinks). This method can be utilized for verbal and nonverbal children. This method combines many approaches to learning such as psychoanalytic theory (avoiding harsh procedures), operant learning (using a variety of forms of positive reinforcement), and social learning theory (using a doll to imitate and using positive peer pressure to motivate). The methodology can be applied to teach other skills such as grooming, dressing, and eating.
MOTIVATING THE TRAINER. Toilet training relieves skin irritations from diapers, reduces the cost and time of changing diapers, improves the parent-child relationship, opens up social opportunities like childcare and travel, and teaches independence which often generalizes to other skills.
DEFINING “TOILET TRAINED.” The child goes to the toilet in the absence of the caregiver, undresses, urinates/defecates, wipes, flushes/empties, and redresses. The child has no daytime accidents after one week.
DEFINING “MANUAL GUIDANCE.” When a child does not respond to a command, the trainer uses a hand(s) over the child’s hand(s) to complete the task. The trainer does not do the task for the child. The trainer implements manual guidance after 2 seconds of no response or incorrect response to the command. This ensures errorless learning, so the child is always successful and never frustrated. The amount of manual guidance should be gradually faded with increasing reward/praise for more independence.
PRE-TRAINING. The child must be at least 20 months of age. 1. The child must demonstrate bladder control by the ability to hold urine for 2 hours, and urinate in a stream, not a continuous sprinkle. 2. The child must have the physical development of walking and fine motor skills to hold objects. 3. The child must have instructional readiness by demonstrating the ability to respond to basic commands (in verbal or non verbal language) and imitate a model such as “stand up, sit down,” “walk to the bathroom.” Before training, practice dressing and undressing, watch siblings toileting while talking through the steps, teach words such as: potty, toilet, pants, wet, dry, sit down, stand up, pee/poop. *Start changing diapers in the bathroom only, and dump contents in the toilet, thus making the connection between human waste and the toilet.
SUPPLIES. Decide if you will use the toilet, a potty chair, or a potty seat insert. Obtain snack and drink supplies. Use drinks that your child will consume in large quantities. Use snacks that will be motivating and induce the desire to drink, like salty snacks. The more the child drinks, the more opportunities to train. The child should wear underwear (with seven extras available) and loose, elastic type pants.
PREPARATION.
1. Decide where you will conduct the training. The kitchen with a potty chair has access to waterproof floor, drinks, and snacks, but it does not generalize to the bathroom or a public restroom easily.
2. Consider using a doll that wets to demonstrate the procedures listed below. If your child has no connection to dolls and is confused by the training aide, then skip this.
3. Develop a Friends Who Care list—family members and favorite characters who will be so proud.
4. Remove distractions. Minimize phone calls, friend visits, chores, dinner preparations, sibling interference for the first day/week of training. This training requires focus and patience!
PROCEDURES
1. Have the child wear underwear with no shirt or a shirt that is rolled up. Give the child 8oz of liquid to drink every hour. Conduct a dry pants inspection every 15 minutes. Have the child feel the underpants (use manual guidance as needed), and ask “Are your pants dry?” Have the child indicate the answer by word or nod. If the pants are dry, give drink, small snack, and praise.
2. Conduct potty trials every 30 minutes. Practice approach to the toilet, lower pants, sit for 10 minutes, raise pants. When giving verbal instructions, always start with the child’s name first, stand at arm length to provide manual guidance, point, be brief, use the same words for items, and use an enthusiastic tone of voice with lots of praise words for every successful step. When the child is seated on the toilet, ensure this is a relaxing quiet time so that it leads to urination. The child can hold a toy or book.
3. Show approval for a potty trial with verbal praise, hugs, smiles, clapping, snack rewards—frequently, enthusiastically, and immediately. Convey social importance such as “Mommy is so proud of you!” especially for being clean. When you have successful urination, use your Friends Who Care list.
4. In between trials, use verbal rehearsal: “Where do big boys/girls go pee?” “Do big boys/girls have wet pants?” “Daddy uses the toilet to pee, where are you going to pee?”
5. When your child wets his underwear, convey verbal disapproval: “We do not wet our pants.” No scolding or punishment. Start a Positive Practice protocol. A. “Billy wet his pants. Billy has to practice going to the potty.” Direct the child to rapidly walk to the potty and lower pants, sit for one second, pull up pants. Quickly repeat ten times from various locations in the house. This teaches urgency and how to access the potty from different locations. B. Conduct a pants inspection 10 times to clarify the difference between wet and dry. Give verbal disapproval for wet pants of you and Friends Who Care. C. Require him to change into clean pants, put clothes in laundry location, and clean up any floor spill. Putting the clean up responsibility on him teaches him that it is easier to go to the toilet because accidents are a lot of work and time.
6. Do not allow tantrums to interrupt the sequence of training. Teach that a tantrum will not escape the task, and that compliance is rewarded. Persevere through a tantrum with manual guidance.
Copyright P. Long
Reference: Azrin and Foxx (1974), Toilet Training in Less Than a Day, Pocket Books, New York: New York.
METHOD. This methodology was developed by psychologists who had successfully toilet trained 95% of adults and 100% of children with intellectual disabilities in two research studies. The time frame averaged three hours for a typical child and three days for a moderate disability. The method relies on positive reinforcement (attention, praise, hugs, snacks, drinks). This method can be utilized for verbal and nonverbal children. This method combines many approaches to learning such as psychoanalytic theory (avoiding harsh procedures), operant learning (using a variety of forms of positive reinforcement), and social learning theory (using a doll to imitate and using positive peer pressure to motivate). The methodology can be applied to teach other skills such as grooming, dressing, and eating.
MOTIVATING THE TRAINER. Toilet training relieves skin irritations from diapers, reduces the cost and time of changing diapers, improves the parent-child relationship, opens up social opportunities like childcare and travel, and teaches independence which often generalizes to other skills.
DEFINING “TOILET TRAINED.” The child goes to the toilet in the absence of the caregiver, undresses, urinates/defecates, wipes, flushes/empties, and redresses. The child has no daytime accidents after one week.
DEFINING “MANUAL GUIDANCE.” When a child does not respond to a command, the trainer uses a hand(s) over the child’s hand(s) to complete the task. The trainer does not do the task for the child. The trainer implements manual guidance after 2 seconds of no response or incorrect response to the command. This ensures errorless learning, so the child is always successful and never frustrated. The amount of manual guidance should be gradually faded with increasing reward/praise for more independence.
PRE-TRAINING. The child must be at least 20 months of age. 1. The child must demonstrate bladder control by the ability to hold urine for 2 hours, and urinate in a stream, not a continuous sprinkle. 2. The child must have the physical development of walking and fine motor skills to hold objects. 3. The child must have instructional readiness by demonstrating the ability to respond to basic commands (in verbal or non verbal language) and imitate a model such as “stand up, sit down,” “walk to the bathroom.” Before training, practice dressing and undressing, watch siblings toileting while talking through the steps, teach words such as: potty, toilet, pants, wet, dry, sit down, stand up, pee/poop. *Start changing diapers in the bathroom only, and dump contents in the toilet, thus making the connection between human waste and the toilet.
SUPPLIES. Decide if you will use the toilet, a potty chair, or a potty seat insert. Obtain snack and drink supplies. Use drinks that your child will consume in large quantities. Use snacks that will be motivating and induce the desire to drink, like salty snacks. The more the child drinks, the more opportunities to train. The child should wear underwear (with seven extras available) and loose, elastic type pants.
PREPARATION.
1. Decide where you will conduct the training. The kitchen with a potty chair has access to waterproof floor, drinks, and snacks, but it does not generalize to the bathroom or a public restroom easily.
2. Consider using a doll that wets to demonstrate the procedures listed below. If your child has no connection to dolls and is confused by the training aide, then skip this.
3. Develop a Friends Who Care list—family members and favorite characters who will be so proud.
4. Remove distractions. Minimize phone calls, friend visits, chores, dinner preparations, sibling interference for the first day/week of training. This training requires focus and patience!
PROCEDURES
1. Have the child wear underwear with no shirt or a shirt that is rolled up. Give the child 8oz of liquid to drink every hour. Conduct a dry pants inspection every 15 minutes. Have the child feel the underpants (use manual guidance as needed), and ask “Are your pants dry?” Have the child indicate the answer by word or nod. If the pants are dry, give drink, small snack, and praise.
2. Conduct potty trials every 30 minutes. Practice approach to the toilet, lower pants, sit for 10 minutes, raise pants. When giving verbal instructions, always start with the child’s name first, stand at arm length to provide manual guidance, point, be brief, use the same words for items, and use an enthusiastic tone of voice with lots of praise words for every successful step. When the child is seated on the toilet, ensure this is a relaxing quiet time so that it leads to urination. The child can hold a toy or book.
3. Show approval for a potty trial with verbal praise, hugs, smiles, clapping, snack rewards—frequently, enthusiastically, and immediately. Convey social importance such as “Mommy is so proud of you!” especially for being clean. When you have successful urination, use your Friends Who Care list.
4. In between trials, use verbal rehearsal: “Where do big boys/girls go pee?” “Do big boys/girls have wet pants?” “Daddy uses the toilet to pee, where are you going to pee?”
5. When your child wets his underwear, convey verbal disapproval: “We do not wet our pants.” No scolding or punishment. Start a Positive Practice protocol. A. “Billy wet his pants. Billy has to practice going to the potty.” Direct the child to rapidly walk to the potty and lower pants, sit for one second, pull up pants. Quickly repeat ten times from various locations in the house. This teaches urgency and how to access the potty from different locations. B. Conduct a pants inspection 10 times to clarify the difference between wet and dry. Give verbal disapproval for wet pants of you and Friends Who Care. C. Require him to change into clean pants, put clothes in laundry location, and clean up any floor spill. Putting the clean up responsibility on him teaches him that it is easier to go to the toilet because accidents are a lot of work and time.
6. Do not allow tantrums to interrupt the sequence of training. Teach that a tantrum will not escape the task, and that compliance is rewarded. Persevere through a tantrum with manual guidance.
Copyright P. Long
Friday, February 24, 2012
Why my discussion of evidence supporting autism treatment is professionally unethical--Part I
Research-based evidence supporting GI interventions in autism
Over the past six years, I have become a maven on the topic of gastrointestinal (GI) disease in autism. I have read nearly every published research article on the GI/autism topic, along with the associated topic of beneficial dietary intervention in autism. My knowledge has a rare perspective because I applied it to the successful treatment of my three-year-old son. In 2007, he became one of the youngest children in the US diagnosed with “autistic enterocolitis” by Dr. Arthur Krigsman after colonoscopy, endoscopy, biopsy, and the help of a pill camera. In 2009, his GI disease was in remission and he had made “atypical” developmental progress for a child with severe autism. As of 2012, he is a physically-thriving first grader in a typical classroom with the support of an educational assistant. Although he is not fully recovered from autism, his development was so significantly improved that his doctor urged us to participate in the NIH study of recovered children from autism.
Recovery from autism may be a new topic to some readers because professional therapists do not talk about it. Why not? I am also a professional therapist who works with children with special needs and my professional board considers discussion of the aforementioned topics with parents as “unethical.” The requirements of my board certification clearly states that I cannot discuss or recommend “non-evidence based” interventions. During my schooling, I was taught that dietary and medical interventions for autism are “controversial treatments” and “non-evidence based.” My certification can be denied or revoked if I choose to discuss these topics with parents. However, I am keenly aware that there is a noteworthy amount of research that supports both GI and dietary intervention in autism. And I have personally lived with a child who greatly benefitted from the application of these interventions.
What shall I do in this ethical dilemma? My undergraduate degree in psychology taught me to guard against groupthink. And my graduate degree in educational psychology taught me to counter bully tactics with passive aggression. The resulting rational decision is to publish a convincing amount of research that supports what my profession claims to be “non-evidenced based.” Part I will include my literature review of gastrointestinal research in autism. Part 2 will include dietary research in autism. If you know parents with a child affected by autism, please forward this to them because no other professional will share this information with them for the reasons cited above.
Part I: Evidence supporting GI intervention in autism
Citation: Long, Pam. (2010). “Effects of Chronic Gastrointestinal Symptoms on Behavior in Autism.” Baylor University. (This document has been registered with turnitin.com to prevent plagiarism. )
Autism or Autism Spectrum Disorders (ASD) are a group of developmental disabilities characterized by atypical development in communication, socialization, and behavior. Although the current psychological diagnostic criteria (DSM-IV) does not include sensory disorders as a core symptom, they are also common in autism. The occurrence of autism in the U.S. has skyrocketed from 1 in 10,000 children in 1980 to 1 in 110 children in 2010, becoming the most prevalent developmental disorder than all others combined (Center for Disease Control and Prevention or CDC, 2001, 2009). Because the diagnostic criteria has not expanded since 1994, the CDC has recently refuted the prevailing suggestion that criteria widening could account for the 57% increase in autism prevalence from 2002 to 2006 (CDC, 2009). The CDC’s autism prevalence report in 2009 disproved that criteria widening, better evaluations, increased awareness, earlier identification, and diagnostic substitution could account for the increase in autism prevalence, and concluded that autism is an “urgent public health concern,” which is now affecting more than 1% of the U.S. population. Furthermore, because genes remain stable in populations, a genetic etiology cannot explain an epidemic. Most autism experts are now turning to an unknown cause with both genetic and environmental factors. These conceptual adjustments have sparked a significant paradigm change in autism research. Autism, which historically was regarded by most as a genetically inherited mental illness, now has growing research to support that it is a disease with onset in the second year of life with inflammation in the brain, the immune system, and the gastrointestinal tract.
For the past twenty years, the American Academy of Pediatrics has ignored the parental reports that children with autism have a higher frequency of chronic gastrointestinal (GI) symptoms than neurotypical children. These symptoms can be divided into five categories: diarrhea, constipation, reflux, abdominal discomfort, and self-restricted diets. Pediatrics reported from a population-based medical records review (Ibrahim et al., 2009) that children with autism did not have a higher frequency of these GI symptoms (chronic or acute not specified) compared to healthy peers in diarrhea, reflux, and abdominal discomfort, but children with autism did have a higher prevalence of constipation and feeding issues/food selectivity. The Ibrahim et al. study baselessly concluded that constipation and feeding issues/food selectivity in autism must have a “behavioral etiology.” However, there is no support that children hold their stool to the point of impaction or starve themselves as a long-term self-imposed ritualistic behavior.
In January 2010, Pediatrics (Buie et al., 2010a) ignited a new direction for autism treatment and research with the consensus of 27 multi-disciplinary medical experts reporting that there is overwhelming clinical support for higher prevalence of chronic GI symptoms in autism for all five categories. In contrast from the view endorsed by the AAP which concluded that autistic behavior causes GI symptoms (Ibrahim et al., 2009), this consensus report concluded that chronic GI symptoms can cause maladaptive behaviors in autism. Although the origin of the chronic GI symptoms remains an area of medical research, this consensus report validated that chronic, reflux esophagitis , and abdominal pain and discomfort in autism manifests in behavioral problems such as aggression, self-injurious behaviors, sleep disorders, and irritability (Horvath and Perman, 2002a; McAtee et al., 2004; Carr and Owen-DeSchryver, 2007). Additionally, Nikolov et al. (2009) found that children with autism with GI symptoms showed greater severity of irritability, anxiety, and social withdrawal than children with autism without GI symptoms. Nikolov et al’s. findings are consistent with the known effects of chronic GI symptoms on adults with Inflammatory Bowel Disease (IBD). Moreover, Buie et al. (2010a) reported that chronic GI symptoms in autism are commonly overlooked and undiagnosed by medical professionals because non-verbal and low-verbal children often present with atypical symptoms, unlike adults who can verbalize their complaints. These atypical symptoms are maladaptive behaviors disregarded by doctors as collective symptoms of autism, and therefore children with autism usually do not get testing or treatment for chronic, uncomfortable, and painful GI symptoms.
Buie et al.’s (2010a) consensus report includes a directive for not only doctors, but also for educators and childcare workers, to gain awareness on how to recognize the chronic GI symptoms in autism. Educators need to partner with parents to learn about the recommendations for evaluation and treatment of GI symptoms for children with autism (Buie et al., 2010b). Behavior problems in children with autism have been related to GI abnormalities (Horvath and Perman, 2002b). Children with autism and GI symptoms are at higher risk for problem behaviors than those without GI symptoms (Committee on Educational Interventions for Children with Autism, 2001). Medical treatment of GI symptoms has resulted in improvement in behavior in autism (Balzola et al., 2005). Behavioral and educational strategies will not effectively resolve behavior problems where pain may function as a setting event for maladaptive behaviors such as self-injury (Carr and Smith, 1995). However, behavioral therapy that promotes a means of communicating the type and location of pain would be helpful for obtaining a medical diagnosis (Carr and Herbert, 2008). These communication skills can lead to coping skills for responding less aversively to simple daily task demands in the classroom during moments of pain or discomfort (Carr and Blakely-Smith, 2006).
The implications for GI-related behavior problems includes lower quality of life and less educational development. Problem behaviors interfere with optimal functioning of the child, family, and community and are the most important factor in determining quality of life (Carr et al., 1999). Maladaptive behaviors also diminish responses to educational interventions and social development. Because health impairments have a significant impact on the trajectory of a young child’s academic achievement, elementary school teachers have been trained to identify potential hearing and vision deficits to parents. Likewise, early detection of chronic GI symptoms in autism could lead to treatment. Follow-up research could then study the improvements in the trajectory of the child’s developmental gains.
The cost of special education for autism is estimated at three times that of typical peers in general education. A bulk of this cost is dedicated to managing maladaptive behaviors through personnel such as behavior therapists and teacher aides. With 1 in 110 of US children being diagnosed with autism, there is a cost-reducing justification for educators to investigate GI-related behavioral problems in autism. Minimizing behavioral problems also increases productivity for both teachers and students. Overall, the rationale for showing a relationship between GI symptoms and behavior in autism in the elementary school setting is the following: promoting early intervention and treatment, improving quality of life, maximizing gains in critical periods of development, minimizing costly behavior related therapies and personnel, and increasing productivity in the classroom.
Buie et al. (2010a) recommends future research to develop a screen for GI disorders in individuals with autism. Currently there are no consultants or instruments in existence to help educators assess this under-diagnosed problem in their schools. Ideally this screening would involve parents, teachers, and a trained school nurse working together. Often parents of special needs children rely on special educators with years of experience to help them learn more about their child’s disability, so educators play a vital role in the early identification of this impairment. Nikolov et al. (2009) points to the gap in research, “Systematic comparisons of clinical characteristics in children with GI symptoms and GI asymptomatic children with [autism] are few in number and replication all but nonexistent.” (p. 406)
References
Balzola, F., Barbon, V., Repici, A., Rizzetto, M., Clauser, D., Gandione, M., et al. (2005). Panenteric IBD-like disease in a patient with regressive autism shown for the first time by the wireless capsule enteroscopy: Another piece in the jigsaw of this gut-brain syndrome? American Journal of Gastroenterology, 100(4), 979-981. doi:10.1111/j.1572-0241.2005.41202_4.x
Buie, T., Campbell, D. B., Fuchs, G. J.,III, Furuta, G. T., Levy, J., VandeWater, J., et al. (2010a). Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125(Supplement_1), S1-18. doi:10.1542/peds.2009-1878C
Buie, T., Fuchs, G. J.,III, Furuta, G. T., Kooros, K., Levy, J., Lewis, J. D., et al. (2010b). Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs. Pediatrics, 125(Supplement_1), S19-29. doi:10.1542/peds.2009-1878D
Carr, E. G., & Blakeley-Smith, A. (2006). Classroom intervention for illness-related problem behavior in children with developmental disabilities. Behavior Modification, 30, 901-924. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=BM.CJ.IJA.CARR.CIIPBC&site=ehost-live&scope=site
Carr, E. G., & Herbert M. R. (2008) Integrating behavioral and biomedical approaches: a marriage made in heaven. Autism Advocate, 50(1):46-52.
Carr, E. G., Horner, R. H., Turnbull, A. P., Marquis, J. G., McLaughlin, D. M., McAtee, M. L., et al. (1999). Positive Behavior Support for People with Developmental Disabilities: A Research Synthesis. Washington DC: American Association on Mental Retardation. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=PBSPDDRS.CARR.AMERICANASSOCIATIONONMENT.AIII&site=ehost-live&scope=site
Carr, E. G., & Owen-DeSchryver, J. (2007). Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 413-424. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=JADD.CG.DAC.CARR.PIPPBM&site=ehost-live&scope=site
Carr, E. G., & Smith, C. E. (1995). Biological setting events for self-injury. Mental Retardation and Developmental Disabilities Research Reviews, 1(2): 94-98. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=MRDDRR.A.ID.CARR.BSES&site=ehost-live&scope=site
Centers for Disease Control and Prevention. (2009) “Prevention of Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network (ADDM), U.S. 2006.” Surveillance Summaries, December 18, 2009. MMWR 2009;58 (No. SS-10). Retrieved from www.cdc.gov/mmwr/PDF/ss/ss5810.pdf
Centers for Disease Control and Prevention. (2001) “National Vaccine Program OfficeVaccine Fact Sheets -- Autism Prevalence.” August 2001. Retrieved from http://www.hhs.gov/nvpo/factsheets/fs_tableVII_doc2.htm
Committee on Educational Interventions for Children with Autism. (2001). Educating Children With Autism. Washington, DC: National Academy Press. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=ECA.COMMITTEE.NATIONALACADEMYPRESS.BJJA&site=ehost-live&scope=site
Horvath, K., & Perman, J. A. (2002). Autism and gastrointestinal symptoms. Current Gastroenterology Reports, 4, 251-258. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=CGR.D.BEA.HORVATH.AGS&site=ehost-live&scope=site
Horvath, K., & Perman, J. A. (2002b). Autistic disorder and gastrointestinal disease. Current Opinion in Pediatrics, 14, 583-587. doi: 10.1097/00008480-200210000-00004.
Ibrahim, S. H., Voigt, R. G., Katusic, S. K., Weaver, A. L., & Barbaresi, W. J. (2009). Incidence of gastrointestinal symptoms in children with autism: A population-based study. Pediatrics, 124(2), 680-686. doi:10.1542/peds2008-2933
McAtee, M., Carr, E. G., & Schulte, C. (2004). A contextual assessment inventory for problem behavior: Initial development. Journal of Positive Behavior Interventions, 6, 148-165. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=JPBI.F.ADH.MCATEE.CAIPBI&site=ehost-live&scope=site
Nikolov, R., Bearss, K., Lettinga, J., Erickson, C., Rodowski, M., Aman, M., et al. (2009). Gastrointestinal symptoms in a sample of children with pervasive developmental disorders. Journal of Autism & Developmental Disorders, 39(3), 405-413. doi:10.1007/s10803-008-0637-8
Copyright P. Long
Over the past six years, I have become a maven on the topic of gastrointestinal (GI) disease in autism. I have read nearly every published research article on the GI/autism topic, along with the associated topic of beneficial dietary intervention in autism. My knowledge has a rare perspective because I applied it to the successful treatment of my three-year-old son. In 2007, he became one of the youngest children in the US diagnosed with “autistic enterocolitis” by Dr. Arthur Krigsman after colonoscopy, endoscopy, biopsy, and the help of a pill camera. In 2009, his GI disease was in remission and he had made “atypical” developmental progress for a child with severe autism. As of 2012, he is a physically-thriving first grader in a typical classroom with the support of an educational assistant. Although he is not fully recovered from autism, his development was so significantly improved that his doctor urged us to participate in the NIH study of recovered children from autism.
Recovery from autism may be a new topic to some readers because professional therapists do not talk about it. Why not? I am also a professional therapist who works with children with special needs and my professional board considers discussion of the aforementioned topics with parents as “unethical.” The requirements of my board certification clearly states that I cannot discuss or recommend “non-evidence based” interventions. During my schooling, I was taught that dietary and medical interventions for autism are “controversial treatments” and “non-evidence based.” My certification can be denied or revoked if I choose to discuss these topics with parents. However, I am keenly aware that there is a noteworthy amount of research that supports both GI and dietary intervention in autism. And I have personally lived with a child who greatly benefitted from the application of these interventions.
What shall I do in this ethical dilemma? My undergraduate degree in psychology taught me to guard against groupthink. And my graduate degree in educational psychology taught me to counter bully tactics with passive aggression. The resulting rational decision is to publish a convincing amount of research that supports what my profession claims to be “non-evidenced based.” Part I will include my literature review of gastrointestinal research in autism. Part 2 will include dietary research in autism. If you know parents with a child affected by autism, please forward this to them because no other professional will share this information with them for the reasons cited above.
Part I: Evidence supporting GI intervention in autism
Citation: Long, Pam. (2010). “Effects of Chronic Gastrointestinal Symptoms on Behavior in Autism.” Baylor University. (This document has been registered with turnitin.com to prevent plagiarism. )
Autism or Autism Spectrum Disorders (ASD) are a group of developmental disabilities characterized by atypical development in communication, socialization, and behavior. Although the current psychological diagnostic criteria (DSM-IV) does not include sensory disorders as a core symptom, they are also common in autism. The occurrence of autism in the U.S. has skyrocketed from 1 in 10,000 children in 1980 to 1 in 110 children in 2010, becoming the most prevalent developmental disorder than all others combined (Center for Disease Control and Prevention or CDC, 2001, 2009). Because the diagnostic criteria has not expanded since 1994, the CDC has recently refuted the prevailing suggestion that criteria widening could account for the 57% increase in autism prevalence from 2002 to 2006 (CDC, 2009). The CDC’s autism prevalence report in 2009 disproved that criteria widening, better evaluations, increased awareness, earlier identification, and diagnostic substitution could account for the increase in autism prevalence, and concluded that autism is an “urgent public health concern,” which is now affecting more than 1% of the U.S. population. Furthermore, because genes remain stable in populations, a genetic etiology cannot explain an epidemic. Most autism experts are now turning to an unknown cause with both genetic and environmental factors. These conceptual adjustments have sparked a significant paradigm change in autism research. Autism, which historically was regarded by most as a genetically inherited mental illness, now has growing research to support that it is a disease with onset in the second year of life with inflammation in the brain, the immune system, and the gastrointestinal tract.
For the past twenty years, the American Academy of Pediatrics has ignored the parental reports that children with autism have a higher frequency of chronic gastrointestinal (GI) symptoms than neurotypical children. These symptoms can be divided into five categories: diarrhea, constipation, reflux, abdominal discomfort, and self-restricted diets. Pediatrics reported from a population-based medical records review (Ibrahim et al., 2009) that children with autism did not have a higher frequency of these GI symptoms (chronic or acute not specified) compared to healthy peers in diarrhea, reflux, and abdominal discomfort, but children with autism did have a higher prevalence of constipation and feeding issues/food selectivity. The Ibrahim et al. study baselessly concluded that constipation and feeding issues/food selectivity in autism must have a “behavioral etiology.” However, there is no support that children hold their stool to the point of impaction or starve themselves as a long-term self-imposed ritualistic behavior.
In January 2010, Pediatrics (Buie et al., 2010a) ignited a new direction for autism treatment and research with the consensus of 27 multi-disciplinary medical experts reporting that there is overwhelming clinical support for higher prevalence of chronic GI symptoms in autism for all five categories. In contrast from the view endorsed by the AAP which concluded that autistic behavior causes GI symptoms (Ibrahim et al., 2009), this consensus report concluded that chronic GI symptoms can cause maladaptive behaviors in autism. Although the origin of the chronic GI symptoms remains an area of medical research, this consensus report validated that chronic, reflux esophagitis , and abdominal pain and discomfort in autism manifests in behavioral problems such as aggression, self-injurious behaviors, sleep disorders, and irritability (Horvath and Perman, 2002a; McAtee et al., 2004; Carr and Owen-DeSchryver, 2007). Additionally, Nikolov et al. (2009) found that children with autism with GI symptoms showed greater severity of irritability, anxiety, and social withdrawal than children with autism without GI symptoms. Nikolov et al’s. findings are consistent with the known effects of chronic GI symptoms on adults with Inflammatory Bowel Disease (IBD). Moreover, Buie et al. (2010a) reported that chronic GI symptoms in autism are commonly overlooked and undiagnosed by medical professionals because non-verbal and low-verbal children often present with atypical symptoms, unlike adults who can verbalize their complaints. These atypical symptoms are maladaptive behaviors disregarded by doctors as collective symptoms of autism, and therefore children with autism usually do not get testing or treatment for chronic, uncomfortable, and painful GI symptoms.
Buie et al.’s (2010a) consensus report includes a directive for not only doctors, but also for educators and childcare workers, to gain awareness on how to recognize the chronic GI symptoms in autism. Educators need to partner with parents to learn about the recommendations for evaluation and treatment of GI symptoms for children with autism (Buie et al., 2010b). Behavior problems in children with autism have been related to GI abnormalities (Horvath and Perman, 2002b). Children with autism and GI symptoms are at higher risk for problem behaviors than those without GI symptoms (Committee on Educational Interventions for Children with Autism, 2001). Medical treatment of GI symptoms has resulted in improvement in behavior in autism (Balzola et al., 2005). Behavioral and educational strategies will not effectively resolve behavior problems where pain may function as a setting event for maladaptive behaviors such as self-injury (Carr and Smith, 1995). However, behavioral therapy that promotes a means of communicating the type and location of pain would be helpful for obtaining a medical diagnosis (Carr and Herbert, 2008). These communication skills can lead to coping skills for responding less aversively to simple daily task demands in the classroom during moments of pain or discomfort (Carr and Blakely-Smith, 2006).
The implications for GI-related behavior problems includes lower quality of life and less educational development. Problem behaviors interfere with optimal functioning of the child, family, and community and are the most important factor in determining quality of life (Carr et al., 1999). Maladaptive behaviors also diminish responses to educational interventions and social development. Because health impairments have a significant impact on the trajectory of a young child’s academic achievement, elementary school teachers have been trained to identify potential hearing and vision deficits to parents. Likewise, early detection of chronic GI symptoms in autism could lead to treatment. Follow-up research could then study the improvements in the trajectory of the child’s developmental gains.
The cost of special education for autism is estimated at three times that of typical peers in general education. A bulk of this cost is dedicated to managing maladaptive behaviors through personnel such as behavior therapists and teacher aides. With 1 in 110 of US children being diagnosed with autism, there is a cost-reducing justification for educators to investigate GI-related behavioral problems in autism. Minimizing behavioral problems also increases productivity for both teachers and students. Overall, the rationale for showing a relationship between GI symptoms and behavior in autism in the elementary school setting is the following: promoting early intervention and treatment, improving quality of life, maximizing gains in critical periods of development, minimizing costly behavior related therapies and personnel, and increasing productivity in the classroom.
Buie et al. (2010a) recommends future research to develop a screen for GI disorders in individuals with autism. Currently there are no consultants or instruments in existence to help educators assess this under-diagnosed problem in their schools. Ideally this screening would involve parents, teachers, and a trained school nurse working together. Often parents of special needs children rely on special educators with years of experience to help them learn more about their child’s disability, so educators play a vital role in the early identification of this impairment. Nikolov et al. (2009) points to the gap in research, “Systematic comparisons of clinical characteristics in children with GI symptoms and GI asymptomatic children with [autism] are few in number and replication all but nonexistent.” (p. 406)
References
Balzola, F., Barbon, V., Repici, A., Rizzetto, M., Clauser, D., Gandione, M., et al. (2005). Panenteric IBD-like disease in a patient with regressive autism shown for the first time by the wireless capsule enteroscopy: Another piece in the jigsaw of this gut-brain syndrome? American Journal of Gastroenterology, 100(4), 979-981. doi:10.1111/j.1572-0241.2005.41202_4.x
Buie, T., Campbell, D. B., Fuchs, G. J.,III, Furuta, G. T., Levy, J., VandeWater, J., et al. (2010a). Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125(Supplement_1), S1-18. doi:10.1542/peds.2009-1878C
Buie, T., Fuchs, G. J.,III, Furuta, G. T., Kooros, K., Levy, J., Lewis, J. D., et al. (2010b). Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs. Pediatrics, 125(Supplement_1), S19-29. doi:10.1542/peds.2009-1878D
Carr, E. G., & Blakeley-Smith, A. (2006). Classroom intervention for illness-related problem behavior in children with developmental disabilities. Behavior Modification, 30, 901-924. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=BM.CJ.IJA.CARR.CIIPBC&site=ehost-live&scope=site
Carr, E. G., & Herbert M. R. (2008) Integrating behavioral and biomedical approaches: a marriage made in heaven. Autism Advocate, 50(1):46-52.
Carr, E. G., Horner, R. H., Turnbull, A. P., Marquis, J. G., McLaughlin, D. M., McAtee, M. L., et al. (1999). Positive Behavior Support for People with Developmental Disabilities: A Research Synthesis. Washington DC: American Association on Mental Retardation. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=PBSPDDRS.CARR.AMERICANASSOCIATIONONMENT.AIII&site=ehost-live&scope=site
Carr, E. G., & Owen-DeSchryver, J. (2007). Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 413-424. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=JADD.CG.DAC.CARR.PIPPBM&site=ehost-live&scope=site
Carr, E. G., & Smith, C. E. (1995). Biological setting events for self-injury. Mental Retardation and Developmental Disabilities Research Reviews, 1(2): 94-98. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=MRDDRR.A.ID.CARR.BSES&site=ehost-live&scope=site
Centers for Disease Control and Prevention. (2009) “Prevention of Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network (ADDM), U.S. 2006.” Surveillance Summaries, December 18, 2009. MMWR 2009;58 (No. SS-10). Retrieved from www.cdc.gov/mmwr/PDF/ss/ss5810.pdf
Centers for Disease Control and Prevention. (2001) “National Vaccine Program OfficeVaccine Fact Sheets -- Autism Prevalence.” August 2001. Retrieved from http://www.hhs.gov/nvpo/factsheets/fs_tableVII_doc2.htm
Committee on Educational Interventions for Children with Autism. (2001). Educating Children With Autism. Washington, DC: National Academy Press. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=ECA.COMMITTEE.NATIONALACADEMYPRESS.BJJA&site=ehost-live&scope=site
Horvath, K., & Perman, J. A. (2002). Autism and gastrointestinal symptoms. Current Gastroenterology Reports, 4, 251-258. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=CGR.D.BEA.HORVATH.AGS&site=ehost-live&scope=site
Horvath, K., & Perman, J. A. (2002b). Autistic disorder and gastrointestinal disease. Current Opinion in Pediatrics, 14, 583-587. doi: 10.1097/00008480-200210000-00004.
Ibrahim, S. H., Voigt, R. G., Katusic, S. K., Weaver, A. L., & Barbaresi, W. J. (2009). Incidence of gastrointestinal symptoms in children with autism: A population-based study. Pediatrics, 124(2), 680-686. doi:10.1542/peds2008-2933
McAtee, M., Carr, E. G., & Schulte, C. (2004). A contextual assessment inventory for problem behavior: Initial development. Journal of Positive Behavior Interventions, 6, 148-165. Retrieved from http://ezproxy.baylor.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=epref&AN=JPBI.F.ADH.MCATEE.CAIPBI&site=ehost-live&scope=site
Nikolov, R., Bearss, K., Lettinga, J., Erickson, C., Rodowski, M., Aman, M., et al. (2009). Gastrointestinal symptoms in a sample of children with pervasive developmental disorders. Journal of Autism & Developmental Disorders, 39(3), 405-413. doi:10.1007/s10803-008-0637-8
Copyright P. Long
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