FAASTimes - UM-CARD
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FAASTimes - UM-CARD
University of MiamiNova Southeastern University Center for Autism & Related Disabilities (UM-NSU CARD) FA A S Ti m e s Family Times Autism/Asperger Spectrum Spring 2012 E d i t o r ’s C o r n e r Dr. Diane Adreon Inside this Issue The Psychological Perspective I am often in awe of the varied talents of children and adults with ASD. This painting, Fire under Water, is by a young woman with ASD from Miami. 2-3 Beyond IQ: Ketty Patiño González, Ph.D. Voices from Within: An Insider’s Perspective on ASD 4-6 Preventing Meltdowns Judy Endow, MSW Books on ASD & Related Issues OCD Stress Management 7-8 Explaining Illness & Death An Advocate’s Advice Can Your Child be Arrested at School? Stephanie Langer, Esq. 911 Her inspiration comes from “the words of Vincent Van Gogh and Salvador Dali, works that are dramatic and emotional leave profound impressions…” As you can see, Luisa is a very talented artist. You can see more of her work at www.luisapulido.com (Luisa’s email is [email protected]) FAASTimes Beyond the IQ Page 2 Ketty Patiño González, Ph.D. A distinction has traditionally been made between children with an autism spectrum disorder: those with IQ scores below a standard score of 70 (“low functioning” or “classic autism”) and those with IQ scores of 70 or above (“high functioning”). This dichotomy was made to try to distinguish children who, in addition to having autism characteristics, are functioning in what has been called the “mentally retarded” range from those who are not. Unfortunately, this distinction is artificial and sometimes can even hurt the child and the child’s family, as expectations may be too low for some and too high for others. During the series that starts with this issue, I will attempt to elucidate what IQ really is, how IQ scores are computed, what abilities are needed to learn effectively, and what else, beyond IQ, affects a child’s acquisition of knowledge and his or her ability to reach their potential. As parents, one of the first things we look at when we take our child in for an evaluation is his or her IQ score. What is sometimes not correctly explained to us is what an IQ score is. An IQ score is a conglomeration of different subtests that more or less averages out to what is termed a “Full Scale IQ” (i.e., FSIQ) or what is other times called “General Conceptual Abilities” score, or something similar. However, the FSIQ may be the average of very dissimilar numbers and may prove worthless as a representation of our child’s estimated cognitive abilities. Let me give you an example: A child may obtain an FSIQ of 90, which is in the “Average” range and in the 25th percentile. That sounds like a solid IQ; however, that FSIQ may be the average of very different numbers. If we are dealing with the Wechsler Intelligence Scale for Children (WISC-IV), the best known and most utilized test of IQ, that FSIQ score is made up of four different indexes, or summary scores: Verbal Comprehension (how we use and reason with language), Perceptual Organization (visual processes and how we reason with new information), Working Memory (how we keep information in our minds while we process it), and Processing Speed (how quickly we can perform rote tasks). If the child obtained scores in all four scales that are between, say, 85 and 95, then we can absolutely say that the FSIQ of 90 is representing his overall estimated cognitive abilities at this time. However, if he obtained scores of 60, 100, 85, and 115 (which average to 90) the FSIQ does not come close to giving you any useful information. Let us put aside the Working Memory and Processing Speed Indexes for now and concentrate on the two indexes that are considered to best represent what we think of as “intelligence”: the Verbal Comprehension and Perceptual Reasoning indexes. One finding that is very common in children with autism is that they will have much lower Verbal Comprehension scores than Perceptual Reasoning scores. In essence, the child is much better processing information visually than verbally. FAASTimes Page 3 Beyond the IQ (cont’d) For example, I have seen many children with autism with Verbal Comprehension scores of 70 (2nd percentile) and Perceptual Reasoning scores of 110 (75th percentile). Although this child’s FSIQ may be in the “average” range, her ability to process information verbally is in the second percentile. This means that 98 percent of children her age can process language much better than she can. This, in turn, means that she will undoubtedly get in trouble in school, as traditional academic teaching requires a high degree of verbal abilities to be effective, but much less visual processing abilities. We may also see the reverse, particularly in children with Asperger’s Syndrome. In essence, there is a large group of children with Asperger’s who have a very high Verbal Comprehension score (say 130, in the 98th percentile) and a relatively low Perceptual Reasoning score (say 85, in the 16th percentile). This child will very likely learn in school very well in the lower grades. However, when he gets to the higher elementary grades and above, he may start to get in trouble academically, as visual and reasoning abilities become much more important for success in higher grades. In summary, always go beyond the global IQ score. Look at the scores that make it up and ask the psychologist or educator about the implications of your child’s particular range of index scores. This will help you to be ready for the unique challenges that academics may present to your child. Furthermore, keep in mind that an IQ score is only a component of what children need to have in place to learn in school. In fact, research shows that only about 50% of a student’s learning is explained by IQ. Future columns will go into more detail about the different abilities needed to learn different subject matters (e.g., reading and math) and about other issues that many times we do not consider when thinking about how to get our children ready for the real world. As I always say to the parents of children I evaluate, as your child grows she (and you) will be facing new challenges. Being prepared for the challenges, and even anticipating them, will help you help them. The day your child with an autism spectrum disorder was born you started to run a marathon. I will try to help you a little with your training. Dr. Ketty Patiño González is a licensed clinical psychologist in Miami, Florida. She is also the mother of a profoundly handicapped adult daughter. Dr. Patiño González worked in various capacities at the University of Miami since 1995 until June 2007, when she decided to dedicate all her time to private practice. During her stay at the University of Miami, seeing a need in the community, five years ago she established the Autism Spectrum Assessment Clinic (ASAC) to evaluate children who might be in the autism spectrum. Dr. Patiño González is married and has four children and four grandchildren (and twins on the way). She has presented locally, nationally, and internationally on autism, Asperger’s Syndrome, Attention Deficit Hyperactivity Disorder (ADHD), learning disabilities, and psychoeducational evaluations. Her practice is solely dedicated to assessments. You can reach her at [email protected]. FAASTimes Page 4 Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with ASD Judy Endow, MSW Meltdown behavior is quite common for those with Autism Spectrum Disorders. And, indeed, the most frequently asked question by parents and educators is: “What do I do when my child has meltdowns?” When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain, especially the child. Stages of Explosive Behavior So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Endow, 2009), explosive behavior is defined as having four distinct stages, followed by a clearly defined recovery period. In addition, the physiological fight/flight mechanism is triggered immediately prior to the explosion. In this model, the four stages of explosive behavior are the same for all experiencing explosive behavior and are depicted by four train cars called Starting Out, Picking Up Steam, Point of No Return and Explosion. The idea is to try to prevent the train cars from hooking up, because when they do, we have a runaway train that ends in explosion. Working backwards, the Explosion is the stage where the meltdown behavior is evident. Immediately prior to this is the Point of No Return, which is exactly what it implies—there is no going back from the meltdown because this stage is where the fight/flight response is triggered. The pupils dilate, and breathing and heart rates increase. Physiologically, our bodies respond as if our very lives are at stake, and we automatically behave accordingly: We fight for our lives. It is entirely impossible to reason with anyone in this survival mode. As soon as you see the child’s identified Point of No Return behavior, you can know the Explosion is coming and need to do your best to quickly create and maintain a safe environment. FAASTimes Page 5 Preventing Meltdowns (cont’d) The place to impact explosive behavior is ahead of when it occurs. In the Starting Out phase, whispers of behaviors are evident. The Picking Up Steam phase is just that—the whispers become louder. Though you can learn to successfully intervene at these stages, the most effective way to manage explosive behavior is proactively, before the whispers even start. Strategies to Prevent Meltdowns Before They Start An individual mix of three major supports and interventions is usually most effective in preventing the first stage of meltdown behavior from starting. These three major supports include proactive use of a sensory diet to maintain optimal sensory regulation, visual supports and managing emotions that are too big (Endow, 2011). People with AS usually do not have sensory systems that automatically regulate; instead, they must discover how to keep themselves regulated. This is most often accomplished by employing a sensory diet. A sensory diet for a person with autism is like insulin for a person with diabetes. It is easy to understand that a person with diabetes has a pancreas that is unable to regulate insulin effectively. We can measure blood sugar and know the exact state of affairs, and from there figure out how much insulin the person needs. Sensory Diet: Unfortunately, medical science does not allow us to take a blood sample to measure sensory dysregulation. However, we can figure out and employ a sensory diet to prevent dysregulation, and just like insulin prevents serious consequences for a diabetic, a sensory diet prevents serious troubles for an individual with ASD. As an adult with autism, I spend time every day on sensory integration activities in order to be able to function well in my everyday life. A sensory diet employed proactively goes a long way in preventing the Starting Out stage of explosive behavior from ever occurring (Brack, 2004). Visual Supports: Another crucial area of support to put in place proactively is that of visual supports. As an autistic, I can tell you the saying “A picture is worth a thousand words” is the monumental truth. Although each person with ASD has a unique experience, processing written and spoken words is not considered by most of us to be our “first language.” FAASTimes Page 6 Preventing Meltdowns (cont’d) For me, the meaning I get from spoken words can drop out entirely when I am under stress, my sensory system is dysregulated or my felt emotions are too big. Visual supports can be anything that shows rather than tells. Visual schedules are very commonly used successfully with many individuals with ASD. Having a clear way to show beginnings and endings to the activities depicted on the visual schedule can support smooth transitions, thus keeping a meltdown at bay. For maximum effectiveness, visual supports need to be in place proactively rather than waiting until behavior unravels to pull them out. Managing Felt Emotions: A third area in which many with ASD need proactive support is in managing felt emotions. Most often, felt feelings are way too big for the situation. An example in my life is when I discover the grocery store is out of a specific item; I get a visceral reaction very similar to the horror I felt when first hearing about the 9/11 tragedy. I know cognitively the two events have no comparison and, yet, my visceral reaction is present and I need to consciously bring my too big feelings down to something more workable in the immediate situation. Managing felt emotions does not come automatically, but can be learned over time with systematic instruction and visual supports such as The Incredible 5-Point Scale (Buron & Curtis, 2004). The good news is that explosive behavior can be positively impacted. With proactive supports, explosive behavior can be outsmarted so individuals with ASD can move on to living purposeful and self-fulfilling lives. References Brack, J.C. (2004). Learn to Move, Move to Learn! Sensorimotor Early Childhood Activity Themes. Shawnee Mission, KS: Autism Asperger Publishing Company. Buron, K.D., & Curtis, M. (2004). The Incredible 5-Point Scale. Shawnee Mission, KS: Autism Asperger Publishing Company. Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders. Shawnee Mission, KS: Autism Asperger Publishing Company. Endow, J. (2011). Practical Solutions for Stabilizing Students With Classic Autism: Getting to Go. Shawnee Mission, KS: Autism Asperger Publishing Company. First printed on Education.com with permission of the Autism Society. http://www.education.com/reference/article/explosive-behavior-asperger-syndrome/ Judy Endow, MSW maintains a private practice in Madison, WI providing consultation for families, school districts and other agencies. Besides having autism herself, she is the parent of a son on the autism spectrum. Judy does workshops and presentations on a variety of autism related issues, is part of the Wisconsin DPI Statewide Autism Training Team and a board member of Autism Society of Wisconsin. Judy has authored several books including award winning Paper Words, Discovering and Living with My Autism (2009 AAPC) which won the 2010 International Book Awards Finalist in Autobiography/Memoirs. Her DVD The Power of Words: How we talk about people with autism spectrum disorders matters! (2009 AAPC) won the 2010 Autism Society Award for Excellence in Media. Judy brings a great depth of understanding and compassion to all the work she does. For additional works by Judy please visit Autism Asperger Publishing Company at www.aapcpublishing.net FAASTimes Page 7 Books on ASD & Related Issues Blink, Blink, Clop, Clop An OCD Storybook by Katia Mortiz Obsessive Compulsive Disorder (OCD) is not an easy concept to explain to young children. Blink, Blink, Clop, Clop was written to give parents and professionals an entry into talking with children about OCD, a complex and usually progressive neurobiological disorder. Children can relate their own experiences to those of Henrietta, Daisy, Snort, and Biscuit, a group of farm animals who have obsessive thoughts and compulsions that turn out to be caused by a bullying and mischievous insect named O.C. Flea. Blink, Blink, Clop, Clop can help children begin the important journey to understanding their own symptoms and empower them to face their OCD just like the brave animals did. Weston Press: Weston, FL Totally Chill: My Complete Guide to Staying Cool A Stress Management Workbook for Kids with Social, Emotional, or Sensory Sensitivities by Christopher Lynch, PhD It is crucial that children learn and develop skills to help them to manage their stress as independently as possible. Totally Chill: The Complete Guide to Staying Cool is a stress management workbook that is meant to be read, completed, and used as much as possible by children themselves. The graphics and interactive style of this publication make it ideal for children grades 3 through middle school. Everyone feels stress – adults and children alike. It’s part of life. But life can be a lot easier when we learn new skills and ideas to help us handle the stress in our lives. Autism Asperger Publishing: Shawnee Mission, KS FAASTimes Page 8 Book on ASD & Related Issues Life in Asperger Lane by Dan Coutler For years, support groups in the United States, Canada and Australia have used Dan Coulter's articles to improve life for people with Asperger Syndrome and their families. This book collects Dan's first 70 articles. Spurred by his son's diagnosis with Asperger Syndrome, Dan used his skills as a successful television writer/producer/director and public relations executive to become a leading Asperger advocate. His articles include insights from his own family life, from the varied people he's interviewed to produce DVDs about Asperger Syndrome, and from input from Asperger and autism experts who consult on his videos. This book includes the best practices Dan has gathered for people with Asperger Syndrome and for their parents, teachers, counselors and other supporters. With warmth and humor, Dan focuses on positive, practical steps that have worked for a wide range of individuals and families. Coulter Video, Inc.: Winston-Salem, NC. Understanding Death and Illness and What They Teach About Life An Interactive Guide for Individuals with Autism or Asperger's and their Loved Ones by Catherine Faherty Understanding Death and Illness and What They Teach About Life provides an excellent way for parents and professionals alike to explain to children and adults with autism difficult moments in life like the death or illness of someone they know. Faherty explains, in depth, how to use this resource. The chapters cover areas such as illness and injury, recuperating and healing, death, communication, what happens when someone dies, putting your pet to sleep, the rituals and traditions that people follow when someone has died, and much more. The issues in the book are explained in very simple ways making it easier for everyone to understand. Future Horizons: Arlington, TX. FAASTimes Page 9 C a n Yo u r C h i l d b e A r r e s t e d a t S c h o o l ? B y S t e p h a n i e L a n g e r, E s q . Did you know that if your child commits a crime at school he/she can and most likely will be arrested? Did you know that your child will be charged with a felony if he/ she hits a teacher or other school employee? Did you know that the reverse is not true? Parents need to know that there are little, if any, protections for children who hit while in school. If your child is arrested, he/she will be fingerprinted and photographed. The fingerprints will be submitted to the Florida Department of Law Enforcement Database & the FBI Database. An arrest cannot be sealed or expunged from the FBI database. Your child can be and probably will be questioned by the police, especially the school board police, without a parent being notified or present. If your child is found guilty or convicted of a felony, he/she may be automatically suspended from school. Your child will have to provide a DNA sample to be held in the state’s DNA database and cannot live or visit anyone who lives in public or Section 8 housing. There are many reasons children act out in school. But for many children with an Autism Spectrum Disorder, their actions may not be intentional or malicious. For children with disabilities who are non verbal or have overwhelming sensory issues, the only way they can express themselves is through their physical movements. Many children with disabilities have behavior and/or sensory issues that result in the child lashing out in an aggressive manner by biting, spitting, hitting, kicking or throwing things when they become frustrated, overwhelmed or simply because they do not get what they want at that moment. Criminal laws do not take into account a child’s disability or the fact that a physical act of aggression may only be a manifestation of that child’s disability. What parents need to know, however, is that in criminal law, a person has to know and understand what they are doing, mens rea, to be held accountable for their actions. Further, intent is a necessary element of battery. For example in the case of C.B. v. State, 810 So.2d 1072 (Fla. 4th DCA March 20, 2002), a student was asked to hand a lighter to a teacher, rather than hand over the lighter, the student threw the lighter and it hit the teacher. The Court found that the student did not intend to hit the teacher and therefore could not be charged with battery. Teachers and schools are becoming overwhelmed with students who have behavior issues because they are not getting the necessary training and resources to assist them in properly addressing behavior issues when they first manifest. As a result schools and teachers are turning more quickly to the criminal justice system to punish and ultimately remove the problem children from that school. FAASTimes Page 10 C a n Yo u r C h i l d b e A r r e s t e d ( c o n t ’ d ) A prime example of this growing trend is the recent reporting of an 8 year old student with ADHD being arrested fives times in four months for throwing things, spitting and hitting while at school in Orange County, Florida. In September 2011, Broward County, Florida, after having a student arrested for battery, the teacher was also able to obtain a restraining order against the student resulting in the student being kicked out of the school. The Florida legislature, in 1996, found that because of the mandatory attendance laws, which require children to attend school until the age of 16, teachers and educators were vulnerable to violent crimes by juvenile offenders. The law was passed to protect the safety and welfare of educators and to deter classroom violence against teachers and other educators by enhancing the penalties for assaults and batteries committed against educators. October 1, 1996, Florida law reclassified the crime of battery from a misdemeanor to a felony when the battery is committed upon a teacher or other school employee. This law applies to not just teachers, but to any employee within the school system. This law also applies to teachers and employees of private schools. What parents need to know is that the law does not take into account why the student hit the teacher. Once a student hits a teacher they can be arrested and criminally charged with a third degree felony. The student will be facing up to five years in prison and a $5,000 fine. The teacher does not have to suffer any injuries for the child to be arrested. In Florida, a battery is defined as the actual and intentional touching or striking of another person against their will; no injury is required. If, however, a teacher hits a student they are only charged with simple battery, which is a first degree misdemeanor that carries a penalty of less than one year in prison and a $1,000 fine. What can parents do? Parents need to educate both the court and the lawyers about their child’s disability and how it manifests itself. Parents need to present to the court all the surrounding facts and circumstances regarding why the child might have hit the teacher. If the teachers are not properly trained to address your child’s behavioral needs, educate the court and the lawyers on what type of training is required. If there are positive interventions that work, but the school is not utilizing or implementing such interventions, educate the court and the lawyers that the hitting could have been avoided with a different approach by the school. Do not be afraid to argue that the school created the situation and so, the child should not be held accountable by a criminal court for his/her actions. I am not suggesting that children should not be held accountable for their actions, I am however, stating that the criminal court may not always be the proper forum to address behaviors that are a manifestation of someone’s disability. FAASTimes Page 11 C a n Yo u r C h i l d b e A r r e s t e d ( c o n t ’ d ) What can parents do at school to prevent their child from being arrested? Parents can be better informed, ask more questions and attempt to hold the schools and teachers accountable for their actions and inactions. For example, parents should request a copy of the District’s policy on the use of restraints before consenting to the same. What parents need to know is that their consent to restrain a child can be limited. Parents can and should specify under what circumstances restraining may be used. Parents can restrict who is permitted to restrain the child and what type of restraints can be used. Parents should require that they be notified any time restraints are used. Parents should also require positive interventions and strategies to be put into place and require that staff be properly trained in how to implement the positive interventions and strategies. Parents should not be afraid to ask for the interventions to be updated or changed if they are not successful or for updated evaluations to determine what the child needs. If the parents have the option to move a child, the parents should not be afraid to ask for a new teacher or aide to work with their child. Parents should also know that the principal of each school has the ultimate authority and discretion when implementing disciplinary action against a student at their school. Make sure the principal is educated about your child and his/her disability. Parents should know that all schools have a punitive discipline system, sometimes called a zero tolerance policy, which all students are required to follow, including students with disabilities. The only limit imposed for students with disabilities is that the school may not exclude (suspend) a child with a disability from their education for over ten days without according the child some due process rights, such as a manifestation determination, an examination of the IEP and possible amendment to address the behavior issues or provide a functional behavior assessment (FBA) or review of the behavior intervention plan (BIP). It is important to know your rights and the rights of your child so that you and your child can become strong self advocates. The best way to avoid an arrest in school is to become informed, ask questions and be vigilant in protecting your rights and the rights of your children. Knowledge is power. Stephanie Langer, Esq., Southern Poverty Law Center, Miami, FL [email protected] References: Beard v. State, 842 So.2d 174 (2nd DCA 2003). Orlandosentinel.com (2-25-2011).1996 Fl. ALS 293 Fla. Stat. § 784.081(2) (2011). Fla. Stat. §§ 775.082; 775.083 (2011). Fla. Stat. § 784.03(1) (2011). Fla. Stat. §§ 784.03(1); 775.082; 775.083 (2011). We are on the Web! www.umcard.org or www.nsucard.org UM-NSU CARD Dr. Diane Adreon, Editor 5665 Ponce de Leon Blvd PO Box 248768 Coral Gables, FL 33124-0725 305-284-6556 800-9-AUTISM ext.1 [email protected] Do you have an original article addressing issues of interest to families of individuals with autism spectrum disorders (ASD) that you are interested in sharing with others? Are you someone on the spectrum that would like to give insight into the world of ASD from your own perspective? Do you or your have a creative side and would like to see your artwork published? If so, please send us your work and it may be premiered in our next issue of FAASTimes! CARD is a state-funded resource and support program dedicated to improving the lives of individuals with autism and related disabilities including deaf-blindness and pervasive developmental disorders. CARD does not endorse specific programs or points of view presented in this newsletter.