AUTISM TREATMENT AND POTENTIAL THERAPIES PEARLS FOR PEDIATRICS. Catherine Riley, MD Developmental Behavioral Pediatrician

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1 AUTISM TREATMENT AND POTENTIAL THERAPIES PEARLS FOR PEDIATRICS Catherine Riley, MD Developmental Behavioral Pediatrician

2 Disclosure I do not have any financial relationships to disclose I do not plan to discuss unapproved of off label use of products

3 Objectives 1. Recognize co-morbidities frequently seen in children with autism 2. Identify appropriate treatment options for children with an autism spectrum diagnosis 3. Describe potential risks and benefits associated with complimentary therapies used for children with autism

4 What are the risk factors for ASD? Male gender Sibling with ASD/ Family history Higher maternal/ paternal age Prematurity, low birth weight Perinatal complications ~10% associated with known genetic/ chromosomal abnormalities (e.g. Down Syndrome, Fragile X, Tuberous Sclerosis, Rett Syndrome) Johnson & Myers,

5 Co-morbidities frequently seen: ADHD Intellectual disability Learning disability OCD (vs. repetitive behaviors) Anxiety/ depression Externalizing behaviors (tantrums, aggression), irritability

6 Case 1 Peter is 5 years old. He has frequent outbursts and tantrums. He is talkative but constantly speaks about preferred topic (Spiderman). He is active and often pushes others/plays rough. Peers often avoid playing with him. At school he does better when in a small group or working 1:1. At home, he is difficult to control. He gets aggressive when placed in time out. He pretends to be Spiderman and repeats what he hears from TV.

7 ADHD Poor eye contact Socially inappropriate Don t show empathy Sensory processing difficulty Uncoordinated Impulsive Responds to structure and routines

8 Case 2 Mark is a 7 year old male with repetitive self injurious behavior. He hits himself and often bangs his head against the wall. These behaviors occur in both home and school environments. Mark gets frustrated when he can not do something. Mark has about 20 words that he uses to communicate. He is not on any medications. He does not have seizures. He lives at home with parents and 2 younger siblings. He attends the same school for the past 2 years and has an aide in the classroom.

9 Intellectual Disability Repetitive behaviors common in both Communication challenges Look for engagement and play skills appropriate to developmental level

10 Case 3 At 3 years old, when she started preschool, Amy did not speak to either the teacher or other children. Her parents report that she talks to them and grandmother using complete sentences with clear speech. Amy prefers to repeat activities and is reluctant to try activities. She frequently plays with the same toy little people placing them in a neat line and becomes upset if things are not done in the same way. An uncle has autism.

11 Anxiety Meltdowns Poor eye contact Avoids social interactions Quiet, does not answer questions

12 Medical Comorbidity Gastrointestinal Seizures Sleep Disturbance Psychiatric issues Genetics

13 Gastrointestinal

14 White Diet

15 Neurological/Seizures Much higher risk for epilepsy in children who have both autism and intellectual disability, a review of 21 studies: ASD with intellectual disability: 23.7% ASD without intellectual disability: 1.8% S. Woolfenden, V. Sarkozy, G. Ridley, M. Coory, K. Williams A systematic review of two outcomes in autism spectrum disorder epilepsy and mortality Dev Med Child Neurol, 54 (2012), pp

16 Sleep Disturbance Family sleep hygiene (parents might have good sleep practices themselves) Blackout shades/electronics Medication

17 Melatonin More than half of all children with autism spectrum disorder (ASD) struggle with sleep disorders insomnia being the most common. Sleep issues likewise affect many adolescents and adults with autism, though the prevalence in these age groups is not known. Melatonin is a naturally occurring hormone that helps regulate the sleep-wake cycle. Supplements have been found to improve sleep and reduce insomnia in children with autism

18 Genetics Range of heritability, multiple genes implicated Genetic conditions predispose to autism Down syndrome (about 17% have autism) Prader-Willi (about 25 % have autism) Fragile X (30 % of individuals with Fragile X have autism, about 2% of individuals with autism also have Fragile X)

19 Treatment Educational interventions (e.g. special education classroom, IEP goals) Behavioral therapy (e.g. ABA) Developmental models (e.g. Denver, DIR- Floortime, RDI) Speech therapy Social skills instruction OT, PT (if indicated)

20 CAM

21 Type of Product Natural products -Herbs/vitamins -Probiotics Efficacy/ Effectiveness Little research regarding efficacy or documentation of side effects Advantage Disadvantage Cost Consumer driven Not FDA regulated No oversight of potential side effects or management Consumer driven Out of Pocket Mind Body Practices -Auditory integration -Acupuncture -Equine Therapy -Massage -Music Therapy -Yoga Little research regarding efficacy or documentation of side effects Consumer driven Low potential for negative side effects and complications Guidance is non medical Lack of knowledge by medical professionals Lack of regulatory oversight in some treatments Out of Pocket Biomedical Treatments -Off label Rx -Other medical Treatments -Specialized diets Little research regarding efficacy or documentation of side effects Perception of cure High potential for negative side effects and complications Most guidance is in press/internet (non medical) Lack of knowledge by medical professionals Lack of regulatory oversight High Cost Out of Pocket May be expensive

22 Omega-3 Fatty Acids Fatty acids are essential for the development and function of the brain. Omega-3 fatty acids are popular nutritional supplements and widely considered safe. Several very small studies have suggested that omega-3 fatty acid supplements may reduce autism-related symptoms such as repetitive behavior and hyperactivity, as well as improve socialization.

23 Probiotics Gastrointestinal symptoms in children with autism are common and are often linked to the children s abnormal behavior and social interactions. Probiotics are hypothesized to positively impact gut microbial communities in children with ASD. Whether probiotics improve behavior and these markers has yet to be determined. This needs additional study. Caution should be taken in using the probiotics applied in animal models in humans

24 Equine Therapy Case series have identified improvement in teacher reported behavioral scales Need attention to safety (helmet, trained assistants) Risk is low Potential benefit for symptoms Positive social interactions/leisure activity

25 Chelation Chelation--decreasing heavy metal levels in patients with documented toxic exposures. Mercury toxicity has not been causally linked to ASD Some studies used is a hair sample, the accuracy of which is unproven. One child s death is related to intravenous chelation therapy for autism. No FDA approved product with this clinical indication

26 Gluten Free/Casein-free diet Potential benefit with GI symptoms Risk for nutritional compromise Consult with registered dietitian Is not a cure for autism Limits/restricts diet in many who are already very picky eaters

27 Hyperbaric Oxygen Hyperbaric oxygen therapy provides a higher concentration of oxygen delivered in a chamber or tube containing higher than sea level atmospheric pressure. Hyperbaric oxygen therapy has been approved for treating specific conditions such as decompression sickness (some use for wound healing). Case series and randomized controlled trials show no evidence to support the benefit of HBOT for children with ASD Food and Drug Administration has published a warning for parents to beware of false or misleading claims about HBOT for treating autism (no FDA approved product on market with this clinical indication)

28 Medications Target Symptoms Hyperactivity, impulsivity, inattention Repetitive behavior, rigidity, OCD-like symptoms Sample medications Stimulants, a2- agonists SSRI, atypical antipsychotics Aggression, self-injury, explosive outbursts Atypical antipsychotics, a2-agonists, anticonvulsant mood stabilizers, SSRIs, B-blockers Sleep dysfunction Anxiety Depression Behavioral cycling with rages and euphoria (Bipolar phenotype) Melatonin, a2-agonists SSRIs, Buspar SSRI s Anticonvulsant mood stabilizers, atypical antipsychotics

29 Case Kofi an overweight, 8-year-old boy, has ASD and borderline intellectual functioning (IQ of 75) diagnosed at age 4. He is receiving state-of-the-art physical, occupational, and speech therapy; social skills group therapy; and behavioral therapy. He presents to your general pediatric practice with his mother, who is concerned about new problem behaviors. Over the past several months, Kofi has been biting, spitting, and growling at his classmates, teachers, and 10-year-old brother. She adds that Kofi has difficulty staying in his seat and participating in class activities

30 Teachers are concerned about the safety of the other students and themselves. They have tried several behavioral interventions with limited success. Kofi s mother reports less physical aggression at home, but notes that Kofi has become more irritable. He has tantrums nearly every hour and especially right before bedtime. He was making such great progress with his therapies I don t know what happened!

31 To help with sleep, Kofi s mother has tried: -warm bath -deep pressure massage -weighted vest - relaxing music Kofi wakes up three to four hours after he falls asleep. He wanders the house or cries and screams. Kofi only falls asleep when one of his parents is in the bed with him. His mother reports no heavy snoring, coughing, or times when he briefly stops breathing while he is asleep.

32 Kofi s aggressive and irritable behavior is the highest priority. She worries that it will escalate to a point where he will really hurt someone. She cannot identify any triggers for these outbursts. No stressors or major changes. She and Kofi s teachers have tried time-outs and behavior modification plans Your physical and neurological exam are unremarkable. His BMI remains high at 29.3.

33 You observe one of Kofi s outbursts. He has a high-pitched cry and begins tossing your toys against the wall. He screams and kicks on the floor for several minutes until the screensaver of your computer captivates his attention. Kofi s mother is aware that children with autism can be aggressive and irritable and have difficulties with sleep regulation. She says, My friend s son takes Ritalin for his behavior problems. Do you think medication could help Kofi?

34 Risperidone Risperidone is an FDA-approved atypical antipsychotic medication used for the treatment of behavioral problems in children aged 5 to 17 years with ASD. These behaviors include irritability described as tantrums, aggression, and self-injurious behavior. Side effects: weight gain and increased appetite, sedation, constipation, and fatigue. There can also be effects such as prolactinemia, insulin resistance, elevated lipids, movement disorders (e.g. tremors), seizures, and dry mouth.

35 Monitoring Health monitoring of children on risperidone includes a baseline exam measuring BMI as well as lab testing including: lipid profile liver function tests and fasting glucose (blood sugar) or HBA1C. This testing should be repeated at regular intervals. Clinical trials have confirmed that risperidone is a useful medication for the short-term treatment of irritability associated with ASD.

36 CAM Kofi s mother then tells you that she has been reading up on complementary and alternative medicine (CAM) therapies on the Internet. She is thinking about chelation therapy, antifungal medication to treat yeast overgrowth in his GI tract, and vitamin supplements. Actually, I ve been giving Kofi vitamin supplements I learned about on a website for the past month. I didn t tell you before because I thought you would tell me to stop giving them to him. Kofi s mother then pulls out a folder full of advertisements and articles printed from prominent parent advocacy websites and blogs. She would like your opinion on which treatments are safe for Kofi.

37 Critical to communicate that some therapies are potentially dangerous Chelation therapy hasn t been shown to be effective at helping with the symptoms of ASD. Given the significant risks and high costs, I strongly recommend against starting chelation therapy. Melatonin is one of the most proven of all the CAM therapies used for children with ASD, with improvements in sleep duration and decrease in the amount of time it takes to fall asleep, with no proven risks. It might really improve everyone s quality of life. You remind her it s a good idea to add only one new treatment at a time, so you can see if the treatment results in any change.

38 Surveys estimate that among children with chronic diseases and disabilities, 70% have used CAM, and among these, children with autism spectrum disorder (ASD) are one of eight subgroups reporting the most use of CAM. People use CAM for a multitude of reasons, including: Eagerness to try anything that might help their child Culture/philosophy Dissatisfaction with the nature of the conventional medical system Concern about adverse effects of unnatural medications

39 Resources/Books BOOKS: Baker, Jed No More Meltdowns The Social Skills Picture Book: Teaching Play, Emotion, and Communication to Children with Autism Duncan, Megan Moore, Jeanne Holverstott, Brenda Smith Myles, and Terri Cooper Swanson Autism Spectrum Disorders: A Handbook for Parents and Professionals Garcia Winner, Michelle Inside Out: What Makes the Person with Social Cognitive Deficits Tick? Thinking About YOU Thinking About ME, 2nd Edition Notbohm, Ellen Ten Things Every Child with Autism Wishes You Knew Wheeler, Marcia Toilet Training for Individuals with Autism or Other Developmental Issues Websites: Autism Society of America ( See especially their free downloadable information sheets Autism Speaks ( See especially the First 100 Days Kit Exceptional Parent Magazine ( First Signs Video Glossary ( Interactive Autism Network (iancommunity.org) American Academy of Pediatrics ( Do2Learn ( Many free printable materials, activity suggestions, and online activities

40 What to do while waiting for DBP Refer to Early Intervention (birth to 3) Refer to school district for special preschool and therapy (3-5 yrs) Refer for specific therapy (speech, OT, PT, behavior support) Provide resources and family support Assist with sleep challenges (Melatonin and sleep hygiene)

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