Cynthia Macluskie Parent Mentor of Autism Society of America Greater Phoenix Chapter Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. One should keep in mind however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees - this is why early diagnosis is so crucial. By learning the signs, a child can begin benefiting from one of the many specialized intervention programs. Contrary to what you may hear autism is treatable. It is important to find effective services, treatments and education for autistic children as soon as possible. The earlier these children receive appropriate treatment, the better their prognosis. Slow development or lack of physical, social and learning skills. Immature rhythms of speech, limited understanding of ideas and the use of words without attaching the usual meanings to them. Abnormal responses to sensations. Sight, hearing, touch, pain, smell, taste, balance, the way a child holds his or her body --- any one or a combination of these responses may be affected. Abnormal ways of relating to people, objects and events. Some abnormal behaviors of children with autism are actually caused by medical issues. Once these medical issues are addressed the behaviors stop. It is impossible to learn effectively if you do not feel well . Some children actually lose skills or do not retain skills because of a medical condition. Seizure Disorders Gastrointestinal Disorders Immune Deficiency and Dysfunction Hypothyroidism According to a study published in Epilepsy and Behavior 10 to 30 percent of children with a autism have Epilepsy. Autism and epilepsy: Cause , consequence, co morbidity or coincidence? By Lidia Gabis, John Pomeroy and Mary R. Androla Epilepsy is a well-known co morbidity of children with autism spectrum disorder (ASD), with about one third of these children developing seizures over their lifetime. Electroencephalogram Abnormalities in Children with Autism Spectrum Disorders Seizures do NOT always present exactly the same way in every individual. They can be different from a major convulsion on the floor to minor seizures which look like rapid eye movement or a period of “zoning out.” body shaking or rapid movement of a body party or convulsions (minor or dramatic shaking can occur with the entire body, or body parts like the legs or arms.) a slight body or body part tremble someone may loose consciousness or experience a seizure while “awake” rapid eye blinking zoning out or lack of attention for periods of time Some autism spectrum individual’s zone out or lose attention from time to time as part of their disability. It is important to rule out a medical issue like a seizure. Children having seizures tend to gain and then lose skills. A 24 hour E.E.G. or portable E.E.G. equipment worn for a period of time are the standard test for looking for seizure activity. Seizure activity does not always appear when the tests are being administered. It is important to test the child in one or more environments if seizures are suspected in an individual. Note: Some doctors will only recommend a 45 minute E.E.G. This is not recommended as it is not enough time to investigate if a child has a problem with seizures or not. TEST: Every child on the autism spectrum should be evaluated for seizures with a 24 hour or longer E.E.G. by a pediatric neurologist. TREAT the seizure disorder: It is extremely important to note that seizures can be deadly. If your child has registerable seizure activity it is medically necessary to treat the seizure disorder. Your neurologist will help guide you on what seizure medication is most effective for your child’s type of seizure activity. KNOW THE SIGNS: Parents, friends, therapists, and family members should know the signs of what a seizure looks like and possible precursors to a seizure. Work with your doctor on understanding the signs so you can best work with your child if and when they occur. BECOME KNOWLEDGABLE: Reading and getting familiar with all your options for someone you love with a seizure disorder will help in providing options for treatments and prevention methods that could make a difference in their lives. According to an article in the Journal of Medical Microbiology in 2005 “Children with ASD tend to suffer from severe gastrointestinal problems. “ It found that “GI problems were significantly more frequent in ASD patients than in controls demonstrating a significant association between GI symptoms and autism.” According to an article in Pediatrics, How Common are Gastrointestinal Disorders in Children with Autism by Thea Kuddo, MD and Karin B Nelson, MD “reports from pediatric gastroenterologists have described GI symptoms in 46% to 84% of autistic children.” “A history of GI symptoms was elicited in 70% of children with autism spectrum disorders compared with 22% of children with typical development and 42% of children with other developmental disabilities.” according to a study by Valicenti-McDermott. According to Autism Speaks, “because of their deficits, many children with autism are not able to effectively communicate their symptoms or discomfort to their doctors.” Constipation Diarrhea Reflux Vomiting Abdominal discomfort Gastrointestinal pain can cause behaviors that might be dismissed as a behavior problem instead of a medical issue. Posturing Self Injury Outbursts without obvious cause If you child is having recurrent or chronic diarrhea, constipation, bloating or abdominal pain… If you have a child that wakes up in the night crying… If you have a child that hits their throat or grabs at their neck… If you have a child that leans their stomach against furniture… See a Pediatric Gastroenterologist Most parents recommend Dr. Ursea at Phoenix Children’s Hospital. You should expect the doctor to take a detailed history, do a physical exam and lab work including an intestinal permeability and celiac test. The doctor may want to do an endoscopy or colonoscopy Many children with autism do very well on a gluten free, soy free and dairy free diet. This diet should not be tried until a celiac test has been completed. Autism Society of America Greater Phoenix Chapter has parent mentors’ who can discuss dietary intervention with interested parents. Personally, my child made the greatest gains once we started this diet and it had been life changing for our family. Approximately 25% of children on the spectrum have immune deficiency and dysfunction. Most children with autism do not have symptoms so it is important to run the lab work to rule this disorder. Our parents highly recommend Dr. Hellmers as the immunologist who best understands children with autism. Children who have gastrointestinal disorders are very likely to have immune deficiency. Testing for immune deficiency and dysfunction is very simple and inexpensive. A lab test including : IGG Subclasses Total IGG Immunoglobulin Quantitative The treatment for immune deficiency is IVIG. IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity. Treatment is given every 3-4 weeks. It is usually covered by insurance. Some children with autism experience cognitive gains and improvement in language and social skills. About 5-10% of the general population has a thyroid disorder requiring supplementation, and that percentage may be higher in autism. Poor thyroid function due to lack of iodine is the major cause of mental retardation in the world, resulting in over 80 million cases of mental retardation. Poor thyroid function can be caused by other factors as well. Dr. Sears recommends that all children diagnosed with autism have a thyroid panel run. Thyroid disease can be diagnosed with a simple blood test. Make sure the range used by the lab is the proper range for children. The treatment is a daily medication to supplement the thyroid. Children with autism need a medical home. According to Dr. Melmed, “a medical home requires looking at the child from a holistic perspective, and recognizing the centrality of families and constructing a comfortable medical environment. Finding a qualified, compassionate and responsive physician is a priority for any family seeking medical services for their child with autism.” COMMON SYMPTOMS IN AUTISM Self Injurious behaviors Self stimulatory behaviors Night time waking Toe walking Loss of skills Toilet training issues ARE POSSIBLE SIGNS OF: Ear infections Esophageal Ulcerations Acid Reflux Constipation Seizures Chronic Diarrhea/constipation COMMON SYMPTOMS IN AUTISM Rectal Digging Behavior regression Head banging Skin rashes Poor Attention ARE POSSIBLE SIGNS OF: Protozoal infections Seizures, puberty Upper respirator infections Food sensitivity Constipation When faced with a behavioral issue with a child with autism rule out medical causes before seeking a behavioral approach. Remember what the co-morbid conditions that affect children with autism and make sure to rule them out whenever a new issue arises. Seek medical treatment for your child and do not let doctors dismiss you with “it’s just autism.” Often, it is an unresolved medical issue.