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Special Needs Research and News
Gainesville Music Therapy parents receive frequent e-mails with the articles of interest to the special needs community, including research on Autism, Down Syndrome, ADHD, etc.; conferences and trainings being offered in the local area; and information on music therapy practice. If you would like to receive these articles, and/or our monthly newsletter by e-mail, please e-mail us to join the mailing list.
Monday, February 27, 2006Communicating With the Child Who Has Autistic Spectrum Disorder: A Practical Introduction(Paediatric Nursing)Updated: Feb 26th 2006 By Browne, Maureen E ABSTRACT Many health professionals seem to lack the knowledge and skills required to understand and communicate with the child or young person with an autistic spectrum disorder. Educational materials about this subject for student nurses and healthcare professionals were developed as part of a nursing course and are presented in this article as an introductory reference for those seeking to improve their communication with these children. A short resource list is provided. KEY WORDS Children: development Autism Communication Communication Usually we think of communication as spoken conversation between two people, but it is actually more than that, we use facial expressions, gestures and body language all the time. Using these we give each other important messages, often without our knowledge. Most people learn to communicate as they grow from a baby to an adult. However, if that development is slowed down or interrupted a child may not learn about: * watching people when they are talking * listening to people when they are talking * the meaning of words or how to hold a conversation. What happens when communication does not develop as expected? If you cannot understand what people are saying to you and you have no way of telling people what you want or feel, the world can seem a very scary place. You may have massive tantrums because: * you need something - but cannot tell anyone what it is * you do not want to have or do something - but you do not know how to tell anyone * you do not know what is going to happen next * you do not know where you are going * you do not know where your mother/father/ favourite carer, is going and if they are ever going to come back. You can simply decide it is all too difficult and withdraw into your own world and become very passive. You can become very attached to routines, because then you do know what might happen next, and you are very likely to hate having your routines disrupted. Children without a good communication system are often frightened and frustrated. The only thing they have left to communicate with is their behaviour. The more frightened and frustrated they are, the more likely it is that the behaviour will be challenging, this may include - biting, kicking and throwing tantrums. This is communication. There will be times when we, as their carers, brothers, sisters and friends, know what they want or do not want, but very often we do not know. This can be very frustrating for us. Sometimes, even though we know what they want, we cannot give it to them, but the problem lies in the fact that we cannot get them to understand the reason why. It is therefore really important that children learn some form of communication. Understanding autism When working with a child with autism there are three main factors that will affect their learning and behaviour. These are summarised in Figure 1 in what is termed "The Triad of Impairment' (Public Health Institute of Scotland 2001). * Impairment of social interaction - difficulty with social relationships, reciprocal social interaction and social empathy. We need this to understand what others are thinking, feeling and believe, and we act accordingly. There is poor awareness of self. * Impairment of language and communication - an impairment of language and all modes of communication including facial expressions, gesture, other body language and social timing. There is a lack of understanding of the social uses of communication, for example, for pleasure, conveying information, and the motivation to communicate is lacking. Figure 1. The Triad of Impairment Ill Impairment of thought and behaviour - Inflexibility and rigidity of thought processes which can lead to unsure behaviour. There is a lack of creativity, symbolic play and imagination as well as difficulties in distinguishing imagination from reality (Public Health Institute of Scotland 2001). Imagine yourself suddenly transported to a foreign country; you do not speak the language and the customs are totally new to you. You would be unsure and probably feel frightened. You would not know how to make contact with other people. If someone spoke to you, you would not understand the language or meaning. Try to envisage what it would be like if you did not have the ability for what is termed universal communication - such as smiles, laughter, facial expressions or eye contact. How frightening would that be for you? This is the reality for many autistic children. Table 1: Communication skills Children who have autism generally display a complete and utter disinterest in any form of communication. This behaviour is a way of keeping themselves calm. It is predictable, particular to each child and protects the child from the outside world. The more intensely affected, the greater the barrier around the child becomes, and breaking through to reach the child within this 'world apart' is never easy (Channel Four 1998). Communicating effectively with autistic children takes knowledge and skill. It takes a great deal of patience, understanding, empathy, tolerance and, above all, total commitment. Communicating effectively Gestures, facial expressions and body language Observation is the golden key that opens the door to the autistic child's world. This is one of the most important skills anyone who works with these children can have. It is not something that can be learned quickly: it can take a long time to be able anticipate and interpret the meaning of the slightest unusual gesture or sign. A person's approach is extremely important. It is no good going up to the child and demanding that they do this or that immediately because in most instances you will get a negative response. The child will either ignore you or not take in what you have said. You are seen as another object or physical barrier and sometimes, if the child thinks that you are invading his or her space in any way, he or she will soon let you know by simply removing you. Use of language It is important to speak clearly and slowly, keeping the language simple and literal. Keep sentences or phrases short. Try to avoid the word 'no' as it can cause tantrums; use words such as 'stop'. Alternatively, instead of telling the child what not to do ('Stop drumming with your knife and fork'), tell him or her what to do ('Put your knife and fork down please'). It is always easier for a child to do something than to stop doing something. Pause; give the child time to work out what it is you have said, what it means and what you want him or her to do. Wait, and wait a little longer, and then wait a little bit longer. This is very difficult but can be very effective. If a child is having a tantrum, stop talking, or at the very least, say only the essential. When the autistic child is under severe stress he or she cannot understand what we say. Talking at children at times like these usually makes things worse. Do not insist on eye contact. Some autistic children can take in all the visual information they need with little sideways glances. Others find maintaining eye contact very distressing and the distress they feel gets in the way of understanding. Sign language Sign-along is a simplified signing language used for people with special needs (www.signalong.org.uk). You do not sign every word, just the key words in each sentence: It is time for lunch. Picture exchange system (PECS) (Bondy and Frost 2001) Children use little cards with symbols on them to get things they want, like a crisp symbol card in exchange for crisps or a bubbles symbol card for bubbles. One of the most important reasons for using the PECS system is that it helps to develop children's communication skills by encouraging them to initiate communication rather than just respond to a question, like Sign-along, this form of communication has been shown to have a positive effect on the child who cannot verbally ask for what they want. The child will begin by handing over a symbol card to exchange for one thing, gradually working up to handing over a whole sentence. When the children hand over their sentences they may speak or sign the sentence or simply point to the symbols. There are symbols for all kinds of situations. Some children may have a PECS folder, which they may carry between school and home with their own personal set of symbols. Summary Communicating effectively with the autistic child requires knowledge of this complex condition and continual, careful observation combined with a gentle approach encompassing patience, understanding, tolerance and empathy. Table 1 lists the skills that are needed alongside the negative aspects of a person's attitude and behaviour that would affect their whole approach and therefore prevent effective communication. There are many rewards for those who attain the skills and patience for communicating with the autistic child, the most valuable being trust. If you can gain the children's trust they will, through time, unlock the door to their world and may allow you a glimpse inside ACKNOWLEDGEMENTS Lindy Furby, chartered teacher at St Crispins Special Needs School Catherine MacFarlane, lecturer, /practitioner, Royal Hospital for Sick Children and Napier University, Edinburgh Essential resources Daily life with autism Charlotte Moore who has three sons, two with autism, writes about their birth, behaviour, diagnosis, treatment and about what daily life \is like for the family A Lot to Say! A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments by Jenny Morris for Scope Two Way Street: Communicating with Disabled Children and Young People Educational video and booklet produced by the NSPCC, Joseph Rowntree Foundation and Triangle Useful websites The National Autistic Society www.nas.org.uk/ The Scottish Society for Autism www.autism-in-scotland.org.uk/ Lothian Autistic Society office @lothianautistic.com The number of children and young people on the autistic spectrum is growing. The incidence of autism spectrum disorders is estimated at between 30 and 60 cases per 10,000 people, 'a huge increase over the original estimate 40 years ago of four per 10,000' (Rutter 2005). According to Rutter (2005), the increase is largely a consequence of improved recognition and a considerable broadening of the diagnostic concept. Many of these children and young people regularly attend hospital. For them and their families these times can be made more distressing if there is a lack of knowledge and understanding of how best to communicate with the child or young person. I work within a special needs school with children aged between five and 17 years which 1 joined before undertaking nurse training. I am also a member of the play-scheme staff and a respite carer for Lothian Autistic Society. At different stages of my nursing course I had the opportunity to develop educational materials on the subject of autism and test them on fellow students. This article draws on the contents of a poster, a booklet and a presentation. These materials are based on my experience of children and young people with this complex condition and on the work of Lindy Furby, who kindly gave permission to include excerpts from her information booklet St Crispin's Total Communication Environment (Furby L 2003). Box 1 Some features of autism An autistic child may only join in play if an adult assists permalink posted on 8:21 PM 0 comments
Friday, February 24, 2006Becoming a Resilient Family: Child Disability and the Family SystemBy C. Amber HavensNational Center on Accessibility “…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” (Dickman & Gordon, 1985, p. 109). Today’s parents face a world of challenges with everything from keeping themselves healthy and happy to providing their children a safe environment that fosters the physical, emotional and social growth of their children in today’s society. Sometimes the everyday demands of life seem too great to overcome and families will experience stress and/or crisis as they try to survive. Often families will fall apart or choose to split up the family unit in response to money struggles, addictions, abuse, health, or just plain unhappiness. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. This does not have to be the case. This article addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become a more resilient and healthy family. CHILD DISABILITY According to Dr. Robert Naseef (1997) one of every ten children is born with a disability. An individual is considered to have a disability if they have a physical or mental impairment that substantially limits one or more major life activities such as: seeing, hearing, speaking, walking, breathing, performing manual tasks, learning, caring for oneself, and working (U.S. Department of Justice, 1992). In addition to the stress of the disability itself, financial strain due to medical bills or quality care, lack of control, egos, attitudes, isolation, anger, embarrassment, grief, and protectiveness all merge to bombard the family of a child with a disability. Without a safety net in the family…crisis may loom. These types of certain continuous challenges can be a reaction to the disability itself, the stress and strain the disability creates within the family unit or a family member's reaction to the child with the disability. Regardless of the type of disability, parents must learn to cope with the fact that their child will never fulfill the life they had hoped and dreamed of for them. The journey is long and many families will not make it together. INTERNAL DYNAMICS OF THE FAMILY SYSTEM Marital Strain In a marriage relationship that is unstable, the stress of dealing with a child's disability can cause the family system to collapse; on the other hand, in a relationship that is strong and relatively non-stressed, a child's disability may develop increased closeness and strength in the parent's marriage. While there is a general impression that parents who have a child with a disability are more likely to split up than parents of “normal” children, there has been limited research in this area and it is inconclusive. Although several studies have documented stress in families of children with disability (Hodapp & Krasner, 1995; Innocenti & Kwisun, 1992; McCubbin & Huang, 1989; Singer & Farkas, 1989; Taanila, Syrjala, Kokkonen, & Jarvelin, 2002; Tavormina, Boll, Dunn, Luscomb, & Taylor, 1981; Wallander & Noojin, 1995; and Ziolko, 1991) and stress is often a factor in divorce, none have conclusively linked disability or chronic illness of children to parental divorce. There are different reports concerning divorce rates of parents who have children with disabilities, but most studies agree that there is a high level of marital discord in these families and that divorce or separation is more likely in families of children with more severe and impacting types of disabilities (Hodapp & Krasner, 1995). Hodapp and Krasner (1995) found in their study that families of eighth grade students with disabilities in a large, nationwide sample had higher rates of divorce and separation as compared to families of non-disabled children. Singer and Farkas (1989) in a study of the impact of infant disability on maternal stress perceptions found that 85% of their respondents reported that despite problems the family experienced as a result of the disability, their families were closer because of their shared experience. When people decide to have children there is typically great joy at the impending life they are bringing into the world. That elation and hope for the future can come to a crashing halt when a baby is born with a disability. For many this is too much to bear and sorrow and grief begin as the realization of lost hopes and dreams sets in. Often parents of newborns with severe disabilities are advised to institutionalize their baby or risk destroying their marriage (Dickman & Gordon, 1985). The parents of older children who acquire a disability or become chronically ill also deal with grief and sorrow of lost hopes and dreams. Parents will often feel a deep sense of guilt as if they have caused the disability or disease and will begin the long process of coming to terms with not only their child's disability but with their personal emotions and those of other family members such as siblings, grandparents, aunts, and uncles. A family who has a child with a disability will experience many challenges such as “repeated physical and emotional crises, interactive family issues, ruined schedules, and additional expenses which can create financial burdens for a family,” (Lavin, 2001, p. 21). It may be during these times of physical and emotional stress that parents will take out their frustrations on each other, the other children or even the child with the disability or illness. This can lead to marital problems as well as issues of sibling rivalry, parentification, and even child abuse. Sibling Strain Siblings may share the same emotions that parents feel (i.e. grief, anger, and guilt) and some of these arise from fear and misunderstanding (Batshaw, 1991). Siblings may be afraid that they can “catch” the disability or that they even caused their sibling's disability by wishing mom was not going to have a new baby or that it would just go away (Batshaw, 1991). Siblings may also feel jealous and left out as the child with the disability will require more attention to attend to everyday needs (Pearson & Sternberg, 1986). Other parents and sometimes siblings may be embarrassed about having a child or sibling with a disability; they may lash out at the child with the disability or illness in harmful abusive ways for disrupting their families and adding stress to the family situation. To avoid dealing with marital problems, some parents will turn most of their attention to the affected child to avoid dealing with their spouse or other children. This can make things worse by creating an unhealthy bond between the parent and child taking the focus off their relationship and placing it on the child's illness or disability (Lavin, 2001). FAMILY RESILIENCE Irving Dickman and Dr. Sol Gordon (1985, p. 109) share in their book One Miracle at a Time, that “it is not the child's disability that handicaps and disintegrates families; it is the way they react to it and to each other.” Finding a way to deal with the added stresses, minimize them, overcome them – by sharing them – can glue a marriage (and a family) together more firmly than ever.” Dickman and Gordon (1985) also share that all families need to have a coping mechanism and those families who utilize these as their safety net are more likely to survive as an intact family unit. “By taking care of each other and your relationship you are not only working toward the future you really want, you are giving your children the benefit of a stable, loving home to grow up in. Build on what you already have. Know that seeking the support of professionals and other parents who have lived through what you are experiencing is a sign of strength, not weakness. However, if your family unit separates, you can each still go on to build full and productive lives” (Albrecht, 1995, p. 24). This is the key to becoming a special family; providing the children with a stable family system. According to Winslow, Wolchik, and Sander (2004) most children will adapt well to the transition of divorce, but nearly 20% to 25% will develop mental health or adjustment problems later in life. For the child who has a disability and already struggles with self-esteem and identity issues (Lavin, 2001) not to mention the daily challenges of their disability, this transition may overload them. This makes it critical for families of children with disability to pull together. So what can families of a child with a disability do to thrive in a situation of chronic stress? Walsh (1998) and Boss (2002) both suggest that strategies for facilitating resilience in families experiencing chronic stress situations include opening up channels of communication, seeking professional help (counseling or support groups), making time for each other (spouse and other children) a priority, keeping perspective, developing a support network, and embracing respite. While this list is pretty comprehensive, there is something else that families can do to be resilient…Families can play Communication One of the most important aspects of any human relationship is communication. Communication is the giving and receiving of information for understanding between two or more people. If parents are trying to hang on to their marriage, this is key to coping as a couple. They should share their feelings with one another, so that the other partner does not have to make assumptions or guess as to what the other is feeling. Holding in emotions, thoughts and feelings will protect no one and will more likely make both partners feel isolated when they are already hurting (Albrecht, 1995). Communication is also the sharing of information. You should share the child's disability, illness, diagnosis, doctor's report, and other important information with family members. This is important for all family members who are involved in the child with the disability's life to be on the same page as how to best meet and understand the needs of the child. Since siblings may feel jealous, embarrassed and naturally left out due to the extent of attention given to the child with the disability or chronic illness, it is important to educate siblings and other family members so that they may increase their understanding and acceptance of the sibling with the disability or illness. Although educating family members can seem like a challenging task it can be a fast, easy, and painless process. It is important to note that education should be an ongoing process; as a child naturally grows and changes, so might their disability or illness. In the beginning, many family members may be overwhelmed by the diagnosis and need to hear it directly from the family doctor. Many physicians are open to meeting with families and addressing any questions members might have about the child's disability or illness. If the parents are not comfortable in taking their entire family along to the next doctor's appointment, they might request family members to write down all the questions they have, and once the parents have the answers they can call a family meeting and share the new information with all interested. Parents can also encourage family members to educate themselves through reading materials. For many parents, this might be readings suggested by their physician. The local library is always a great place to start for readings related to disability and family. When sharing new readings with family members, make sure that it is age-appropriate material. There are many children's books that relate the specifics of disability in a way that is understandable and non-frightening to children. This may be key in helping siblings grasp what they are dealing with. Seek Professional Help Counseling for individuals or groups may be beneficial to the family unit regardless of marital status. Counseling can offer comfort in knowing that the emotions, attitudes and feelings of the family members are all “normal” to have (Dickman & Gordon, 1985). Counseling can offer family members the opportunity to redirect their emotions into something positive for the family unit and the best interest of the children. Individual and group counseling can take place with psychiatrists, psychologists, or within a support group of people who have similar experiences. Parents may need assistance deciding what level of support they need from counseling. Doctors, nurses, school officials, other helping professionals, and friends are all good resources to determine where support can be found that has potential to meet the needs of a particular family. Support groups can be beneficial to the husband-wife team as they meet with other husband-wife groups who have lived their current experience and can provide valuable insights or just listen to what a couple is dealing with. Support groups can also be a valuable tool for the single parent or the sibling who needs someone to listen to them and give them emotional support as they deal with their families situations. Listings of support groups can often be found in healthcare settings (i.e. doctor's office, hospital, clinic, and counseling facilities), schools, churches, bookstores, and the internet. Making Time a Priority For parents of a child with a disability, time is a rare gift. Making time for each other, as man and wife not just mom and dad, should be a priority in parenting a child with a disability and key for keeping the marriage intact and healthy. It does not have to be anything fancy, but always make time for each other. Go for a walk in the park, hole up in the bedroom for a few hours, visit a library, go to a movie, etc…just spend time together. Parents should think about what they really need to take care of their relationship and plan ahead to make it happen (Albrecht, 1995). Making time for the other children should be a priority also. Siblings need to know that they are special, valuable, loved and don't always come second. Encourage them to embrace their childhood, thank them for all the help they give around the house, and acknowledge their feelings (Albrecht, 1995; Dickman & Gordon, 1985; and Lavin, 2001). Keep Perspective As a parent of a child with a disability or chronic illness, the emotions experienced are likely to be the strongest they will ever have and these feelings may be confusing (Albrecht, 1995) as they juggle feelings of anger, grief, protectiveness, and love all jumbled together. If the strain of crumbling relationships is added into this already challenging mix it may be too much stress for individual family members to handle causing the family system to collapse. It is important to recognize personal feelings and emotions, try to find a balance, and remember it can always be worse. Develop a Support Network As parents of a child with a disability the most valuable resource available is the family's support network (Dickman & Gordon, 1985; Walsh, 1998). Family members, medical and helping professionals, friends, support groups, trained baby-sitters, etc… In trying times the social network can step in when parents, siblings, or caregivers need a break or help fill in the gaps of the family to meet the needs of other family members. Embrace Respite Respite is time away from the disability and or stress of family, where individual or group family members can focus on themselves or other family members who are affected by the child's disability. Respite may also be needed by the child with the disability or the siblings, time away from the family who is so focused on providing for all the “special” needs that they overlook the child's need for time away from focusing on their disability (Naseef, 1997). There are two types of respite experiences: 1.) formal respite experiences through state programs or camp environments; or 2.) non-formal respite utilizing the support network. Formal respite : Formal respite is created through using organized programs such as state programs, camps, and special recreation programs. Today, many states offer waivers for respite care. This varies from state to state and is tied up with Medicaid programs. Basically, this program pays a qualified and trained caregiver to look after the person with the disability, giving all parties needed time away from each other. Many organized camping programs offer specialized respite weekends where the child with a disability can go to camp for the weekend. The American Camp Association ( http://www.aca.com/) is a resource for accredited camps in the United States . Specialized recreation programs can be found by contacting the local Recreation and Parks Department or special services agencies. The National Respite Locator service ( http://www.respitelocator.org/index.htm) is also a great online resource for finding respite programs. Non-formal respite : Non-formal respite is created through utilizing the support network. This can be having a family member stay with the children while the parents take a vacation, shopping trip, etc… Be creative. Play Through recreation and leisure experiences families have opportunities to experience self-actualization, creatively express themselves, build family unity, be healthier, build esteem of the individual members and of the collective family, reduce stress, conquer boredom, and socialize with each other while extending their social network by making new friends outside of the family (New York State Recreation & Park Society, 2004). Leisure, recreation and play should be an important component of any child's life, this should be no different for the child with a disability. Children learn important life skills through play. Parents teach children important lessons in recreation and leisure times. For the family of a child with a disability, some may think that due to the nature of the child's disability that their child cannot or should not participate in leisure activities for fear of them getting hurt physically or emotionally. For other families, parents may not know how or where to get their child involved in these types of activities. The healthy family knows that “those who play together stay together”. Families in need of assistance in planning or partaking of recreation activities can often find great resources through community institutions such as the local Recreation and Parks Departments, day care centers, human service agencies and even their personal physicians. Other recreation resources can be found at the National Center on Accessibility ( www.ncaonline.org ), the National Center on Physical Activity and Disability ( http://www.ncpad.org/), and other online resources such as Family Village ( http://www.familyvillage.wisc.edu/Leisure/information.html) and Disability and Business Technical Assistance Centers ( http://www.adata.org/centers.htm). In conclusion, having a child with a disability is not a catastrophe for a family system and does not have to be devastating for the parents, siblings or child with a disability. With the right mindset, support system, and a little fun the family of a child with a disability can learn ways to deal with and overcome chronic stress in order to not only survive but thrive. About this Monograph These materials were developed by the National Center on Accessibility for the National Center on Physical Activity and Disability under sponsorship of the Centers for Disease Control and Prevention. About the Author C. Amber Havens is a doctoral student at Indiana University specializing in leisure behavior. She received her undergraduate degree in therapeutic recreation from Arkansas Tech University and her graduate degree from Indiana University . permalink posted on 9:20 AM 1 comments
Faculty members research speech aidUniversity program utilizes B.A. Bar device which can be used to help people with impaired speech communicate
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Monday, February 20, 2006A sound cure?Note: This article was published in Cairo last week.
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Autism surrounded by misunderstanding - expertsBy Maggie Fox, Health and Science Correspondent
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Workshop: Sensory Integration WorkshopGainesville Music Therapy Parents,Below you will find a letter I received announcing a workshop being held in Jacksonville on sensory integration. If you are interested, please contact me and I will email you the workshop brochure, or visit their website for more information. All the best, Abigail Yeh ------------------------------------------ Sensory Resources, publisher of high quality books and materials for sensory integration and sensory processing, will be sponsoring a workshop in Jacksonville, FL on March 7. This workshop has been designed for teachers, families, and health care providers who work with children and adolescents with special needs. The presenter will be Carol Stock Kranowitz, author of the Out of Sync Child, The Goodenoughs Get in Sync, and many other materials, will be introducing her new book Preshool Sense. This Preschool SENSE Workbook companion is easy to follow as well as providing the useful tools that are necessary to implement a systematic program to help teachers recognize sensory processing disorder among their most challenging students.
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Thursday, February 16, 2006Upcoming Conference: 8th Annual Family CafeDear Gainesville Music Therapy Parents,Below, please find information regarding the 2006 Family Café Conference. This is an excellent opportunity to attend workshops on topics of interest to families and individuals with special needs, network with other families with children with special needs, and learn about therapies and services available to you in Florida. Families from Gainesville regularly attend. All the best, Abigail Yeh Dear Friend, The Family Cafe is happy to announce that registration for The 8th Annual Family Cafe Conference featuring The 8th Annual Governor's Summit on Disabilities will officially open at 9:00 AM on the morning of February 14, next Tuesday. You can register by visiting our website, www.FamilyCafe.net {http://www.FamilyCafe.net} beginning at9:00 AM on Tuesday morning; you may also register by faxing your form to 850/224-4674, or by mail to PO Box 15649, Tallahassee, FL32317-5649. Please bear in mind that applications for Financial Assistance will be approved on a first come first served basis, and may provide mileage reimbursement for travel to the event and as well as accommodation at the conference hotel. Funds and space are limited.There is no registration fee associated with The Annual Conference.To be considered for financial assistance, you must live more than 50 miles from Orlando. This year's event is scheduled for Friday, June 2nd through Sunday,June 4th 2006, and will be held at The Caribe Royale Resort and Convention Center, just as it was last year. We have an exciting program in the works, featuring Governor Bush's final appearance atThe Annual Conference as Governor at The 8th Annual Governor's Summit on Disabilities on Friday evening, June 2nd. We will also have an expanded Exhibitors Hall, a full range of informative breakout sessions, multiple Keynote Addresses and Saturday Night Family Entertainment. We hope to see all of you in Orlando this June! Thanks, The Family Cafe permalink posted on 9:29 AM 0 comments
Autism charities merge to boost biomedical research effortsAutism Speaks and the US National Alliance for Autism Research have completed a merger, bringing together two leading organizations engaged in the battle against autism. The combined organization will be known as Autism Speaks.
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Monday, February 13, 2006Research to consider autism dietary treatmentNewcastle University researchers believe autism could eventually be treated through dietary changes if their study into the condition is successful.The study, examining the role of vitamin B12 in autism, is yet to start and is still in need of more participants. That has prompted researchers to issue a public plea for volunteers. Dr Michelle Adams says the study will focus on whether autistic children have different types of genes involved in the metabolism of the vitamin. "One of the questions we have is are autistic children unable to use certain forms of vitamin B12 and if they use certain forms of this vitamin B12, does it affect their neurological development," she said. "So the outcome of this study, if successful, could lead to using a dietary intervention to help either prevent the onset of autism of perhaps reduce the symptoms of autism." permalink posted on 8:13 AM 0 comments
Lullabies do work for babiesSydney :It seems like mothers who sing their babies to sleep do know best, for a new study has found that music therapy can help sick babies in intensive care maintain normal behavioural development, making them less irritable, upset and less likely to cry. As a part of the three-year study, researchers from the University of Western Sydney, in collaboration with the Royal Children's Hospital in Melbourne, studied 40 infants in the Neonatal Unit. The infants were divided into three groups: those hospitalised and receiving music therapy; those hospitalised and not having music therapy; and healthy babies, cared for at home, without music therapy. Dr Carol Newnham, infant neuropsychologist, performed a behavioural development test twice on each infant, about a month apart. During that month, the hospitalised infants who received music therapy had up to 12 sessions of the therapist gently singing to them and touching them in a way that directly related to the therapist's perception of the social needs of the babies. Dr Stephen Malloch, who led the study, said that the findings had shown that while infants who had been given music therapy had maintained the same levels of irritability and crying that they had at admission, those who did not have music therapy deteriorated in their irritability and crying behaviour - coping less with their hospitalisation as time went on. “We found that music therapy supported the infants' behaviour - these infants maintained the same levels of irritability and crying that they had at admission. Meanwhile, those babies in the Neonatal Unit who did not have music therapy deteriorated in their irritability and crying behaviour - coping less with their hospitalisation as time went on,” he said. “It's likely the babies who received music therapy used up less energy when compared with the babies who did not receive the therapy. If a baby is less irritable and cries less, this has implications for rate of healing and weight gain, two significant factors which contribute to the length of a hospital stay,” he added. The study will be published in an international music therapy journal this year. permalink posted on 8:10 AM 0 comments
Tuesday, February 07, 2006The Legal Rights of Children With AutismThe Legal Rights of Children With Autism: An Expert Interview With Jill G. Escher, BA, MA, JDMedscape Psychiatry & Mental Health. 2005;10(2) ©2005 Medscape Posted 07/28/2005 Editor's Note:On behalf of Medscape, Randall White, MD, interviewed Jill G. Escher, BA, MA, JD, a California attorney in the field of autism law, whose son has autism.Like many parents, she met resistance from the school district when she attempted to have her child evaluated for special educational services. To assist other parents who face this situation, she discusses pertinent laws, policies, and procedures intended to protect children with autism. Medscape: How is autism defined by federal law? Ms. Escher: Unfortunately, autism is defined in very vague terms. For a definition by federal law, I refer to the Individuals With Disabilities Education Act (IDEA).[1] This act confers the right to a free and appropriate public education to children with disabilities. The first step is to determine whether the particular child is eligible. There are several eligibility categories; some have to do with well-understood problems like blindness, deafness, and speech and language disorders. One of the categories is autism.There are other pertinent [federal] laws, including section 504 of the Rehabilitation Act,[2] that can help parents obtain specialized services for autistic children. But when it comes to education, IDEA is the primary statute that creates a structure for providing special services. The Rehabilitation Act requires the district to accommodate children with disabilities so that they can be included in ordinary schooling. A typical example of a request via 504 is a child in a wheelchair who cannot go on field trips. On behalf of the child, a parent or guardian would request a 504 plan with the school district to ensure that he or she has equal access for field trips. Usually, because children with autism are deemed eligible for special services under IDEA, they tend not to rely on section 504. Medscape: When was IDEA passed? Ms. Escher: Initially, in 1974. It was substantially revised in 1997, and then it was reauthorized with some amendments in 2005. The 1970s was when it was first recognized that there were hundreds of thousands of disabled children who weren't getting any education. At that time, there was no requirement to force the school district to educate these children; so many of them languished at home or in baby-sitting situations. Medscape: What does the parent of a child with autism need to do to initiate appropriate educational services? Ms. Escher: First and foremost, if parents believe that their child has some form of autism, it is critical to obtain at least 1 independent expert evaluation for that child. Under IDEA, the school district must provide an evaluation of its own. But, in my experience, the school district evaluations are seldom trustworthy or sufficiently comprehensive. They tend to underdiagnose children, and their opinions tend to be preformed. In addition, the evaluations are performed by school psychologists who generally have little knowledge about both autism and the range of educational interventions available for such children, including which ofthese interventions is best for a given child. It is extremely important that parents find the time and, if possible, the money to locate well-qualified experts in autism who can complete a comprehensive evaluation of the child, including recommendations for educational interventions. Universities often serve as an excellent resource for such experts. In California, for example, the University of California at San Francisco, at Davis, or at Los Angeles all have excellent programs with highly regarded experts who routinely do this work. The cost of theseevaluations can run from $700 to $3000. Insurance will probably cover some of the cost, but to get the most appropriate, [unbiased] services, parents usually have to make the investment. Medscape: What happens once the parent has the evaluation in hand? Ms. Escher: The parent should give a copy to the special education contact at the school district. The district is obligated to review all independent evaluations submitted by the parents, including from the [primary care] physician, a neurologist, a psychiatrist, or a psychologist. This type of an evaluation usually comes from a psychologist or a psychiatrist. The district has the obligation to review those, but not to agree with them. Well before the individualized education plan (IEP) meeting, everybody on the child's IEP team should review the parents' independent evaluation(s). Here is a likely scenario: The school district evaluates a child and finds that the child is autistic. However, they only recommend a half hour of speech therapy each week and 20 hours in a mixed-disabilities special education classroom. In contrast, an evaluation by an expert who really understands autism and what is best for the particular autistic child recommends several hours each week of one-on-one speech therapy and 25 hours or more in an intensive, autism-specific program at home or at school. So, the IEP team can be faced with divergent recommendations, and it's very important for the parents to have all the evidence there supporting their view of what their child needs. Medscape: In this type of circumstance, what is the school district required to do? Ms. Escher: The school district is required to hold an IEP meeting before the child commences services through the district. States vary in the details of the timeline, but on the day children turn 3 years old, they are supposed to start a program with the district. The IEP should happen well in advance of the child's third birthday. I also want to emphasize that the school district is obligated to provide evaluations in all areas of the child's disabilities, so that would include not only the psychological evaluations, but also a speech evaluation and an occupational therapy evaluation, and, in some cases, a physical therapy evaluation. There could be others; it depends on the particular child's situation. Therefore, parents may want to obtain independent evaluations in these areas as well. Evaluations should not only describe the scope of the disability, but also set forth recommendations for programming. These should be done before the IEP. Medscape: Parents are permitted to participate in the IEP meeting, correct? Ms. Escher: Not only are they permitted to; the district is required to make all reasonable efforts to ensure their participation. Parents are considered full and equal participants at an IEP meeting. But, while that sounds very good on paper, parents are not usually treated as full and equal participants because the school district regularly withholds vital information about their programming and their policies. In certain cases, the district has even withheld information about the child, and that has affected what services were offered.Medscape: How commonly do parents meet resistance to implementing the experts' recommendations? Ms. Escher: Almost always. In autism, I don't think I've ever heard of a case when a child with autism was routinely given the set of services that the independent experts had suggested. It's all about money. There was a recent federal report showing that a child with autism costs a district something like $19,000 per year, and in California, the number is substantially higher, especially for younger children with autism -- about $25,000-$90,000 annually. It's extremely expensive because the autistic child, especially when young, will often require one-on-one intervention. Medscape: What is the procedure to resolve the difference between parents and the district? Ms. Escher: The procedure is very complicated. If at the IEP meeting (or as often happens, series of IEP meetings), the parents are still unhappy with what the district is wiling to provide, the parents have a couple of choices. The particular procedures vary a little bit from state to state, but the parents generally have the option to file a complaint with the state, which is not the preferred choice. They can ask for mediation, which is sometimes successful. But usually, if this is an irresolvable conflict with the district, the parents will file for a due process hearing -- in other words, an administrative appeal in front of an administrative law judge who works through the state department of education. I would say that in excess of 80% of the time, after parents file for a due process hearing, the dispute is settled. Parents who hire an attorney have a much highersuccess rate than those who choose to go it alone. Going for due process, while it is the dispute service authorized by law, can be very time-consuming and expensive for parents. Medscape: And what if parents can't hire an attorney? Ms. Escher: Well, that happens a lot. Parents can hire an advocate, who is a layperson schooled in IDEA and knowledgeable about education services. In most states, there are many advocates willing to do this sort of work. Often, the parents just go it alone and look for resources that can help them on the Web. One really good source for parents is www.wrightslaw.com (http://www.wrightslaw.com/) .[3] It's an excellent site; I highly recommend that parents visit it. (Note: Ms. Escher[4] also has established a valuable Web site for parents, _http://www.autism-law.com_ (http://www.autism-law.com/) .) Unfortunately, this is a system like many in the world where it helps to have money to hire a lawyer. If you prevail, you are entitled to at least a portion of your attorney's fees. Medscape: How equipped are most school districts to meet the needs of autistic and developmentally disabled children? Ms. Escher: The answer is that except for a few areas, the quality and quantity of services are very lacking. There's a dramatic shortage of teachers who are trained and experienced to work with autistic kids. But I think there's also something else a bit more sinister at work -- school districts have a very strong disincentive to provide quality autism programs because the last thing they want is to gain a reputation for excellence in autism. They don't want more autistic kids to move into the district. More autistic children means more cost. In addition, there are nostandards for providing autism education. Federal law is entirely procedural; IDEA has not 1 word that specifies anything about the substance of what needs to happen in the classroom. The idea that Congress had is that these kids have individualized needs. In addition, there are no standards for providing autism education. Federal law is entirely procedural; IDEA has not 1 word that specifies anything about the substance of what needs to happen in the classroom. The idea that Congress had is that these kids have individualized needs: We [Congress] can't possibly prescribe appropriate programming for every child; so, let's set out a series of procedures for districts and parents to engage in, and hopefully, in this tussle over each and every aspect, the process will yield an appropriate program for a child Medscape: Has there been an effort for professionals, such as teachers and psychologists, to create a consensus on the best approach for autistic children in school? Ms. Escher: The most important one to date is the National Academy of Sciences book called Educating Children With Autism, in which a group of about 14 autism specialists tried to synthesize best practices.[5] Medscape: Have any school districts adopted them? Ms. Escher: The book didn't get into a lot of specifics. It recommended a minimum of 25 hours/week of intensive intervention 12 months a year. The book really relates to children age 8 and younger. There's an important effort that just got under way called the Autism Treatment Network, which has a Web site.[6] It is a collaboration among 6 universities to come up with some treatment standards, which are going to focus on treatment by physicians. But, my understanding is that they are looking at educational interventions as well. Naturally, no one set of standards is going to provide guidance for every single autistic child. However, I think that there should be some joint understanding of minimum practices. Right now,there is so much debate and controversy, it is hard to put standards together. Every time a parent walks into an IEP meeting, they have to reinvent the wheel because there's not a single word in any law about what a school district should do for an autistic child. Medscape: I wanted to ask if you have any advice for people in rural areas with autism, because I'm sure it is even more difficult. Ms. Escher: It is extremely difficult. People in rural areas often have to devise a program on their own. Frequently, where there really aren't any autism programs, the parents pay out of pocket to get a therapist trained in applied behavioral analysis or similar techniques, and that therapist will then train others. The parents can then ask the school district for reimbursement. Medscape: Is reimbursement usually available? Ms. Escher: Yes, reimbursement is available, but parents have to go through certain procedures to get that. They have to make the request for services and be denied; then after they provide written notice to the district of their intent, they can go ahead and seek reimbursement through a due process hearing. Medscape: Is there anything more you think people should know? Ms. Escher: Unfortunately, when parents have a child with autism, they have to learn not only how to adjust their lives and how to care for a child with a catastrophic disability; they have to learn how to be quasi-attorneys. We have a system based entirely on procedure, and parents should make all efforts to learn about the procedures and use them to their advantage. References1. US Department of Education. Individuals with Disabilities EducationImprovement Act (IDEA). 2004. Available at:_http://www.ed.gov/policy/speced/leg/edpicks.jhtml_(http://www.ed.gov/policy/speced/leg/edpicks.jhtml)Accessed June 30, 2005.2. US Department of Education. The Rehabilitation Act. Available at:_http://www.ed.gov/policy/speced/leg/edpicks.jhtml_(http://www.ed.gov/policy/speced/leg/edpicks.jhtml) Accessed June 30,2005. 3. Wright PWD, Wright PD. Wrightslaw. Available at:_http://www.wrightslaw.com/_ (http://www.wrightslaw.com/) Accessed May 5,2005. 4. Escher J. Autism Law: A Parent's Guide to Federal and CaliforniaSpecial Education Law. Available at: _http://www.autism-law.com/_(http://www.autism-law.com/) Accessed June 30, 2005.5. National Research Council, Committee on Educational Interventionsfor Children with Autism. In: Lord C, McGee JP, eds. Educating ChildrenWithAutism. Washington, DC: National Academy Press; 2001. Available at:_http://books.nap.edu/openbook/0309072697/html/index.html_(http://books.nap.edu/openbook/0309072697/html/index.html) Accessed May 5,2005. 6. Autism Treatment Network. Available at:_http://autismtreatmentnetwork.org/about.htm_(http://autismtreatmentnetwork.org/about.htm) Accessed May5, 2005.Funding InformationSupported by an educational grant from Janssen.Jill G. Escher, BA, MA, JD, Attorney-at-Law, San Jose, CaliforniaDisclosure: Randall White, MD, has disclosed that he owns stock, stock options, or bonds in Novartis AG ADR, Millipore Corporation, Novo Nordisk, and Sanofi-Aventis.Disclosure: Jill G. Escher, BA, MA, JD, has disclosed no relevant financial relationships. permalink posted on 2:12 PM 0 comments
Autism link with birth problemsBy Julie Robotham, Medical Editor February 4, 2006
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Friday, February 03, 2006Four Free Online Courses AvailableBelow please find four free online courses now available from Partners in Policymaking's national site to anyone who would like to increase their knowledge and skills:
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The Age of Autism: New test of gold saltsBy DAN OLMSTEDUPI Senior Editor A Columbia University scientist plans to test whether gold salts improve the functioning of "autistic mice" -- a step toward finding whether they could help children with autism. Dr. Mady Hornig of Columbia's Mailman School of Public Health will give the compound to mice that have been bred to be susceptible to thimerosal, a mercury-based preservative in children's immunizations until recently. Some researchers and parents believe thimerosal is implicated in the explosion of autism diagnoses over the past decade, though federal health authorities say that theory has been discredited. In previous research, Hornig found that the susceptible mouse breed shows autistic-like behaviors, including self-mutilation, when given thimerosal at doses proportionate to those children received until recently. Hornig "is developing a treatment protocol using gold salts which she will administer to these genetically susceptible mice to determine if the treatment might improve their behavior and brain function and if there are side effects," according to an announcement of the project by the National Autism Association. "Gold tightly binds mercury and there are anecdotal reports of gold salts being effective in improving autism outcomes." That is a reference to Age of Autism's report last year that the first person ever diagnosed with the disorder improved significantly after treatment with gold salts. That child, known as Donald T., was given the compound to treat a life-threatening attack of juvenile arthritis in 1946, when he was 12 years old. According to Donald's brother, interviewed in the small Mississippi town where both still live, the treatment cleared up the arthritis -- and his autism improved markedly and unexpectedly as well. "When he was finally released (from the Campbell Clinic in Memphis), the nervous condition he was formerly afflicted with was gone," his brother said. "The proclivity to excitability and extreme nervousness had all but cleared up." Donald became "more social," the brother said. He went on to graduate from college, where he belonged to a fraternity; worked at a bank; lives on his own; and now, in retirement, travels the world and plays a good game of golf. That information caught the attention of autism researchers who believe the disorder might result from a toxic exposure in utero or in infancy, possibly the mercury that was used in vaccines as early as 1931 (Donald was born in 1933). One such scientist, chemistry professor Boyd Haley of the University of Kentucky, did a laboratory experiment in December to see if gold salts had any effect on mercury. They did, reversing the binding of mercury to molecules. "This does lend support to the possible removal of mercury from biological proteins in individuals treated with gold salts," Haley said. Gold salts acting on mercury is not the only way they might theoretically help a person with autism. Some researchers believe autism is an autoimmune condition, in which the immune system begins to attack the body. Juvenile rheumatoid arthritis, the ailment Donald had at age 12, is such a condition; gold salts were used to treat it because they somehow calm the inflammatory autoimmune attack. If the same process is happening in the brains of autistic children, gold salts might ameliorate it in the same way. Researchers caution that gold salts should not be tried as a treatment for autism because of the risk of severe side effects and lack of data about its effectiveness. Hornig said she was moved to begin the study by the death of Liz Birt, an advocate for children with autism who died in a car crash in December. Birt was a co-founder of SafeMinds, a group that urges the removal of mercury from all medical products. SafeMinds is sponsoring the study and soliciting donations in Birt's memory. Details of the project, called Go for the Gold, can be found at www.nationalautismassociation.org. -- E-mail: dolmsted@upi.com permalink posted on 7:46 AM 0 comments
Botox Injections Help Children With Cerebral Palsy(DukeMedNews) Doctors at Duke Children's Hospital are treating the tight muscles caused by cerebral palsy with Botox injections. When given in combination with physical therapy, the shots help patients strengthen their weak muscles and restore normal movement.The medication is injected into the muscles during an outpatient visit. Although anesthesia is not required for Botox injections, Duke pediatric neurologist Pedro Weisleder, M.D., Ph.D., teamed with Duke pediatric anesthesiologist Allison Ross, M.D., to develop a system for sedating children with inhaled anesthetics similar to the laughing gas used in many dental offices. "Children don't take well to needles or painful procedures, and several parents asked if we could perform the injections under anesthesia to eliminate their child's pain," said Weisleder, an assistant professor of pediatric neurology at Duke University Medical Center. "The end result is that the procedure is painless and post-anesthesia recovery is rapid. It also allows me to give more accurate injections," he said. To identify the correct muscles for injection, Weisleder uses a special needle through which he can both electrically stimulate the muscles and deliver the medication. The effects generally last about three months. During that time, patients work with a physical therapist to stretch and strengthen their weaker muscles. "Our goal is not to paralyze the muscles, it is to rebalance them around the joints," Weisleder said. In cerebral palsy, the brain loses the ability to moderate the activity of contracting muscles. Muscles that produce contraction are stronger than those that produce extension, Weisleder said. Partially paralyzing the stronger muscles with botulinum toxin gives patients an opportunity to stretch and strengthen the weak muscles, he said. The long-term goal of the two components of the treatment – injections and physical therapy – is to achieve better muscle strength balance which may lead to restoring normal function, Weisleder said.Cerebral palsy encompasses a group of physical and movement disorders that appear in the first few years of life. The muscle spasticity and tightness caused by the disorder make it difficult for people to perform fine motor tasks, such as writing, and causes problems with balance and walking. Though the disorder itself is not progressive, the consequences of the muscle spasms worsen over time, Weisleder said. Spasticity can interfere with daily activities and, in more severe cases, cause significant pain and snap joints out of alignment. Weisleder cautions that not every patient with cerebral palsy will benefit from Botox injections, and the amount of toxin a child can receive at each visit is limited by their body size. permalink posted on 7:44 AM 0 comments
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