What is Autism? An Overview
Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe. Autism was first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital. At the same time, a German scientist, Dr. Hans Asperger, described a milder form of the disorder that is now known as Asperger Syndrome (read more). These two disorders are listed in the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) as two of the five developmental disorders that fall under the autism spectrum disorders. The others are Rett Syndrome, PDD NOS (Pervasive Developmental Disorder), and Childhood Disintegrative Disorder. All of these disorders are characterized by varying degrees of impairment in communication skills and social abilities, and also by repetitive behaviors. For more discussion on the range of diagnoses that comprise autism spectrum disorder, click here.Autism spectrum disorders can usually be reliably diagnosed by age 3, although new research is pushing back the age of diagnosis to as early as 6 months. Parents are usually the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills. Pediatricians may initially dismiss signs of autism, thinking a child will “catch up,” and may advise parents to “wait and see.” New research shows that when parents suspect something is wrong with their child, they are usually correct. If you have concerns about your child's development, don't wait: speak to your pediatrician about getting your child screened for autism. If your child is diagnosed with autism, early intervention is critical to gain maximum benefit from existing therapies. Although parents may have concerns about labeling a toddler as “autistic,” the earlier the diagnosis is made, the earlier interventions can begin. Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure. Research indicates, however, that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with autism spectrum disorders. As soon as autism is diagnosed, early intervention instruction should begin. Effective programs focus on developing communication, social, and cognitive skills.
Treatments for Autism
There is no single treatment protocol for all children with autism, but most individuals respond best to highly structured behavioral programs. The National Institute of Child Health and Human Development lists Applied Behavior Analysis among the recommended treatment methods for autism spectrum disorders. Some of the most common interventions are Applied Behavior Analysis (ABA), Floortime Therapy, Gluten Free, Casein Free Diet (GFCF). Speech Therapy, Occupational Therapy, PECS, SCERTS, Sensory Integration Therapy, Relationship Development Intervention, Verbal Behavior Intervention, and the school-based TEAACH method.
Applied Behavioral Analysis (ABA)Behavior analysis is a natural science of behavior that was originally described by B.F. Skinner in the 1930's. The principles and methods of behavior analysis have been applied effectively in many arenas. For example, methods that use the principle of positive reinforcement to strengthen a behavior by arranging for it to be followed by something of value have been used to develop a wide range of skills in learners with and without disabilities. Since the early 1960's, hundreds of behavior analysts have used positive reinforcement and other principles to build communication, play, social, academic, self-care, work, and community living skills and to reduce problem behaviors in learners with autism of all ages. Some ABA techniques involve instruction that is directed by adults in highly structured fashion, while others make use of the learner¹s natural interests and follow his or her initiations. Still others teach skills in the context of ongoing activities. All skills are broken down into small steps or components, and learners are provided many repeated opportunities to learn and practice skills in a variety of settings, with abundant positive reinforcement. The goals of intervention as well as the specific types of instructions and reinforcers used are customized to the strengths and needs of the individual learner. Performance is measured continuously by direct observation, and intervention is modified if the data show that the learner is not making satisfactory progress. Regardless of the age of the learner with autism, the goal of ABA intervention is to enable him or her to function as independently and successfully as possible in a variety of environments. For a more thorough treatment of Applied Behavioral Analysis, click here. For an essay by an ABA therapist, click here. For an ABA therapist's answers to common questions from parents, click here.
Developed by child psychiatrist Stanley Greenspan, Floortime is a treatment method and a philosophy for interacting with autistic children. It is based on the premise that the child can increase and build a larger circle of interaction with an adult who meets the child at his current developmental level and who builds on the child's particular strengths. The goal in Floortime is to move the child through the six basic developmental milestones that must be mastered for emotional and intellectual growth. Greenspan describes the six rungs on the developmental ladder as: self regulation and interest in the world; intimacy or a special love for the world of human relations; two-way communication; complex communication; emotional ideas; and emotional thinking. The autistic child is challenged in moving naturally through these milestones as a result of sensory over- or under-reactions, processing difficulties, and/or poor control of physical responses. In Floortime, the parent engages the child at a level the child currently enjoys, enters the child's activities, and follows the child's lead. From a mutually shared engagement, the parent is instructed how to move the child toward more increasingly complex interactions, a process known as “opening and closing circles of communication.” Floortime does not separate and focus on speech, motor, or cognitive skills but rather addresses these areas through a synthesized emphasis on emotional development. The intervention is called Floortime because the parent gets down on the floor with the child to engage him at his level.
Gluten Free, Casein Free Diet (GFCF)
Many families of children with autism spectrum disorders are interested in dietary and nutritional interventions that might help some of their children's symptoms. Removal of gluten (a protein found in barley, rye, oats, and wheat) and casein (a protein found in dairy products), in what is known as a Gluten Free, Casein Free diet, or GFCF, is a popular dietary treatment for symptoms of autism. It is based on the hypothesis that these proteins are absorbed differently in children with autism spectrum disorders and act like false opiate-like chemicals in the brain. The hypothesis is not based on an allergic response. Neither the hypothesis nor the effectiveness of this dietary intervention has been demonstrated in scientific studies to date. Studies are ongoing in a number of centers. However, many families report that dietary elimination of gluten and casein has helped regulate bowel habits, sleep, activity, habitual behaviors and enhance overall progress in their individual child. No specific laboratory tests can predict which children might be observed by their families to have a positive response to dietary intervention. For that reason, many families elect a trial of dietary restriction with careful observation by the family and intervention team. A trial of dietary restriction requires attention to basic nutritional guidelines. Dairy products are the most common source of calcium and vitamin D in young children in the U.S. Many young children depend on dairy products for a balanced protein intake. Alternative sources of these nutrients require substitution of other food and beverage products with attention to nutritional content rather than solely as a milk substitute beverage. Substitution of gluten free products requires attention to the overall fiber and vitamin content of a child's diet. Vitamin and supplement use may have both positive effects and side effects. Consultation with a dietitian or physician should be considered and can be helpful to families in the determination of healthy application of a GFCF diet. This may be especially true for children who are picky eaters.
Occupational Therapy can benefit a person with autism by attempting to improve the quality of life for the individual. The aim is to maintain, improve, or introduce skills that allow an individual to participate as independently as possible in meaningful life activities. Coping skills, fine motor skills, play skills, self help skills, and socialization are all targeted areas to be addressed. Through occupational therapy methods, a person with autism can be aided both at home and within the school setting by teaching activities including dressing, feeding, toilet training, grooming, social skills, fine motor and visual skills that assist in writing and scissor use, gross motor coordination to help the individual ride a bike or walk properly, and visual perceptual skills needed for reading and writing. Occupational therapy is usually part of a collaborative effort of medical and educational professionals, as well as parents and other family members. Through such collaboration a person with autism can move towards the appropriate social, play and learning skills needed to function successfully in everyday life.
PECS is a type of augmentative and alternative communication technique where individuals with little or no verbal ability learn to communicate using picture cards. Children use these pictures to “vocalize” a desire, observation, or feeling. These pictures can be purchased in a manualized book, or they can be made at home using images from newspapers, magazines or other books. Since some people with autism tend to learn visually, this type of communication technique has been shown to be effective at improving independent communication skills, leading in some cases to gains in spoken language. A formalized training program is offered through a company called Pyramid Products, and this program takes the caregiver and child through different phases. However, this manual is not the only source of training and resources. Images may be obtained through magazines, photos, or other media. In Phase one, a communication trainer works with the child and their caregivers to help decide which images would be most motivating. For example, images food may elicit the strongest response. Cards are then created (or provided through a pre-made book) with those images, and the trainer and the caregiver work with the child to help him or her discover that, by handing over the card, they can get the desired object. In Phase two, the caregiver then moves farther away from the child when showing the picture, so that the child must actually come over and hand over the card to receive the food reward. This process engages the child's ability to seek and obtain another person's attention. In this way, a full vocabulary and methods for using these new words are taught to the affected individual.In later phases, children are given more than one image so that they must decide which to use when requesting an item, and throughout the process the number of cards grows and thus the child's ‘vocabulary' also increases. Over time, the child may develop the ability to use sentences, including phrases like “I want” to start off the sentence, and even use descriptors like “large” or “red”. Throughout the process, which may take weeks, months or years, the caregiver gives constant feedback to the child. It is thought that by allowing children to express themselves non-verbally, the children are less frustrated and non-desirable behavior including tantrums is reduced.
Relationship Development Intervention
Relationship Development Intervention (RDI) Based on the work of psychologist Steven Gutstein , Relationship Development Intervention (RDI) focuses on improving the long term quality of life for all individuals on the spectrum. The RDI program is a parent- based treatment that focuses on the core problems of gaining friendships , feeling empathy , expressing love and being able to share experiences with others. Dr's Gutstein program is said to be based on extensive research in typical development and translates research findings into a systematic clinical approach. His research found that individuals on the autism spectrum seemed to lack certain abilities necessary for success in managing the real life environments that are dynamic and changing. He calls these abilities dynamic intelligence and describes six aspects as follows:1) Emotional Referencing: The ability to use an emotional feedback system to learn from the subjective experiences of others. 2) Social Coordination:The ability to observe and continually regulate one's behavior in order to participate in spontaneous relationships involving collaboration and exchange of emotions. 3) Declarative Language: Using language and non-verbal communication to express curiosity, invite others to interact, share perceptions and feelings and coordinate your actions with others. 4) Flexible thinking: The ability to rapidly adapt, change strategies and alter plans based upon changing circumstances.5) Relational Information Processing: The ability to obtain meaning based upon the larger context. Solving problems that have no "right-and-wrong" solutions. 6) Foresight and Hindsight: The ability to reflect on past experiences and anticipate potential future scenarios in a productive mannerDr Gutstein , who along with Dr. Rachelle Sheely , formed the Connections Center For Family and Personal Development based in Houston Texas in 1995, says, " We are challenging families and professionals to think beyond achieving mere functionality as a successful outcome for individuals with autism; our reference point for success in the RDI program is quality of life," The goal is social improvements as well as changes in flexible thinking, pragmatic communication, creative information processing and self- development. The program offers training workshops for parents as well as several books that offer step-by step exercises building motivation so that skills will be utilized and generalized. The program is said to be able to be started easily and implemented into regular, daily activities that enrich family life
The SCERTS®Model(Prizant, Wetherby, Rubin, Rydell & Laurent, 2006)The SCERTS® Model is a comprehensive, team-based, multidisciplinary model for enhancing abilities in Social Communication and Emotional Regulation, and implementing Transactional Supports for children and older individuals with autism spectrum disorders (ASD) and their families. SCERTS is not an exclusive approach, in that it provides a framework in which practices and strategies from other approaches may be integrated, such as Positive Behavioral Supports (ABA), visual supports, sensory supports, augmentative and alternative communication (AAC), and Social Stories®. The SCERTS model can be used with individuals across a wide range of ages and developmental abilities. It was developed by Barry Prizant, Amy Wetherby, Emily Rubin, Amy Laurent and Patrick Rydell, a multidisciplinary team of clinicians, researchers, and educators who have more than 100 years experience, and have published extensively in the field of autism. The focus on Social Communication involves developing spontaneous, functional communication and secure, trusting relationships with children and adults. Emotional Regulation involves enhancing the ability to maintain a well-regulated emotional state to be most available for learning and interacting. Transactional Support includes supporting children, their families, and professionals to maximize learning, positive relationships and successful social experiences across home, school and community settings. The SCERTS Model, emphasizes the importance of child initiated communication in natural as well as semi-structured activities for a broad range of purposes such as requesting , greeting, expressing emotions and protesting/refusing. Objectives for the child are developmentally appropriate and may target both verbal and non-verbal forms of communication. SCERTS is a collaborative educational model in that families and educators work together to identify and develop strategies to successfully engage the child in meaningful daily activities. SCERTS differs from the focus of "traditional" ABA that typically targets children's responses in adult directed discrete trials with the use of behavioral techniques to teach language. In contrast, the focus of the SCERTS model is on promoting child-initiated communication in everyday activities. In philosophy and practice, SCERTS is closer to "contemporary" ABA practices such as Pivotal Response Training and Incidental Teaching, which use natural activities in a variety of social situations, as well as semi-structured teaching in social routines. In contrast to most ABA practices, SCERTS relies extensively on visual supports (e.g., photos, picture symbols) for supporting Social Communication and Emotional Regulation. SCERTS is based on child development research and research on the core challenges in autism, in a manner similar to Floortime and RDI. The SCERTS Model is most concerned with helping persons with autism to achieve “Authentic Progress”, which is defined as the ability to learn and apply functional skills in a variety of settings and with a variety of partners. All of a child's partners, including educators, therapists, parents, siblings and peers potentially play an important role in a SCERTS Model Program, because activities in which goals and objectives are addressed include daily routines at home and school, as well as special therapies and activities that have the potential to enhance abilities in independent and self-help skills, with a particular emphasis on social communication and emotional regulation. For example, mealtimes across home and school settings may have the same objectives that include using pictures, words and/or gestures to select food items, to observe and imitate partners in order to benefit from their social models, and to respond to a partners' attempts to support a good emotional state that results in sustained attention and active participation. Objectives in play and social skills may also be identified and targeted at school with classmates, as well as at home with siblings or cousins. A plan to support a child's emotional regulation across each day is also developed based on a child's needs. The plan may include regularly scheduled exercise and “regulating” breaks, opportunities for sensory and motor activities, and a plan used by all partners to modify learning environments. Partners also become expert at reading a child's signals of emotional dysregulation and responding with appropriate support as needed to maximize attention and learning and to prevent escalation into more problematic behavior (e.g., offering deep pressure, simplifying difficult tasks. clarifying tasks through the use of visuals – e.g., “ 2 more then we are all done”). When observing activities in the SCERTS Model, there is always a high priority placed on:1) children initiating as well as responding to partner's verbal and nonverbal communication;2) children actively participating in activities with adults and peers, with an emphasis on joyful, shared positive emotional experience, and the development of trusting relationships,3) partners implementing a range of interpersonal and learning supports to help a child be most available for learning and engaging, 4) partners being highly responsive and supportive in a flexible manner that depends on the child's emotional state, distractions in the setting, the child's success in the activity and the need for appropriate levels of support to actively participate. In SCERTS, there is a great emphasis on child initiation in natural as well as semi-structured activities for a very broad range of communicative functions (e.g., greeting, requesting comfort, protesting/refusing, calling). Objectives are developmentally sequenced, including nonverbal (e.g., gestures) as well as verbal communication and are selected based on a child's functional needs in daily activities as determined by the child's team. Thus, the focus of the SCERTS model on promoting child-initiated communication in everyday activities differs from the focus of "traditional" ABA, that typically targets children's responses in adult directed Discrete Trials with the use of behavioral techniques to teach language. In Philosophy and practice, SCERTS is closer to "contemporary" ABA practices such as Pivotal Response Training and Incidental Teaching, which use natural activities in a variety of social situations with a variety of partners (peers and different adults), as well as semi-structured teaching in social routines. SCERTS also relies on visual supports (e.g., photos, picture symbols) extensively for supporting Social Communication and Emotional Regulation to a greater extent than ABA, and is based on child development research and research on the core challenges in autism, in a manner similar to Floortime and RDI. For further information, including a detailed list of FAQ's and research support for the SCERTS Model, go to www.SCERTS.com .
Sensory Integration Therapy
Sensory Integration is the process through which the brain organizes and interprets external stimuli such as movement, touch, smell, sight and sound. Autistic children often exhibit symptoms of Sensory Integration Dysfunction (SID) making it difficult for them to process information brought in through the senses. Children can have mild, moderate or severe SID deficits manifesting in either increased ( hypersensitivity )or decreased (hyposensitivity) to touch, sound, movement, etc. For example, a hypersensitive child may avoid being touched whereas a hyposensitive child will seek the stimulation of feeling objects and may enjoy being in tight places.
The goal of Sensory Integration Therapy is to facilitate the development of the nervous system's ability to process sensory input in a more typical way. Through integration the brain pulls together sensory messages and forms coherent information upon which to act . SIT uses neurosensory and neuromotor exercises to improve the brain's ability to repair itself. When successful, it can improve attention, concentration, listening, comprehension, balance, coordination and impulsivity control in some children.
The evaluation and treatment of basic sensory integrative processes in the autistic child are usually performed by an occupational and/or physical therapist. A specific program will be planned to provide sensory stimulation to the child, often in conjunction with purposeful muscle activities, to improve how the brain processes and organizes sensory information. The therapy often requires activities that consist of full body movements utilizing different types of equipment. It is believed that SIT does not teach higher-level skills, but enhances the sensory processing abilities thus allowing the child to acquire them.
The communications problems of autistic children vary to some degree and may depend on the intellectual and social development of the individual. Some may be completely unable to speak whereas others have well-developed vocabularies and can speak at length on topics that interest them. Any attempt at therapy must begin with an individual assessment of the child's language abilities by a trained speech and language pathologist.
Though some autistic children have little or no problem with the pronunciation of words, most have difficulty effectively using language. Even those children who have no articulation problems exhibit difficulties in the pragmatic use of language such as knowing what to say, how to say it, and when to say it as well as how to interact socially with people. Many who speak often say things that have no content or information. Others repeat verbatim what they have heard (echolalia) or repeat irrelevant scripts they have memorized. Some autistic children speak in a high-pitched voice or use robotic sounding speech.
Two pre skills for language development are joint attention and social initiation. Joint attention involves an eye gaze and referential gestures such as pointing, showing and giving. Children with autism lack social initiation such as questioning, make fewer utterance and fail to use language as a means of social initiation. Though no one treatment is found to successfully improve communication, the best treatment begins early during the preschool years, is individually tailored, and involves parents along with professionals. The goal is always to improve useful communication. For some verbal communication is realistic, for others gestured communication or communication through a symbol system such as picture boards can be attempted. Periodic evaluations must be made to find the best approaches and to reestablish goals for the individual child.
TEACCH (Training and Education of Autistic and Related Communication Handicapped Children) is a special education program that is tailored to the autistic child's individual needs based on general guidelines. It dates back to the 1960's when doctors Eric Schopler, R.J. Reichler and Ms Margaret Lansing were working with children with autism and constructed a means to gain control of the teaching setup so that independence could be fostered in the children. What makes the TEACCH approach unique is that the focus is on the design of the physical, social and communicating environment. The environment is structured to accommodate the difficulties a child with autism has while training them to perform in acceptable and appropriate ways. Building on the fact that autistic children are often visual learners, TEACCH brings visual clarity to the learning process in order to build receptiveness, understanding, organization and independence. The children work in a highly structured environment which may include physical organization of furniture, clearly delineated activity areas, picture-based schedules and work systems, and instructional clarity. The child is guided through a clear sequence of activities and thus aided to become more organized It is believed that structure for autistic children provides a strong base and framework for learning. Though TEACCH does not specifically focus on social and communication skills as fully as other therapies it can be used along with such therapies to make them more effective.
Verbal Behavior Intervention
Verbal Behavior Intervention is often seen as an adjunct to Applied Behavioral Analysis (ABA). Though both are based on theories developed by Skinner there are differences in concept. In the late 1950s and early 60's when Dr. Ivar Lovaas was developing his ABA principles, Skinner published Verbal Behavior which detailed a functional analysis of language. He explained that language could be grouped into a set of units, with each operant serving a different function. The primary verbal operants are what Skinner termed echoics, mands, tacts, and intraverbals. The function of a mand is to request or obtain what is wanted. For example, the child learns to say the word "cookie" when he is interested in obtaining a cookie. When given the cookie, the word is reinforced and will be used again in the same context. There is an emphasis on "function" of language(VB) as opposed to form (Lovaas-based). In a VB program the child is taught to ask for the cookie anyway he can( vocally, sign language, etc.) If the child can echo the word he will be motivated to do so to obtain the desired object. In a Lovaas-based ABA program the child might say the word cookie when seeing a picture and is thus labeling the item. This form of language is called a "tact." Critics of Lovaas say children are taught to label many words but often cannot use them in functional or spontaneous ways. Another operant, "intraverbals" describes verbal behavior that is under the control of other verbal behavior and is strengthened by social reinforcement. Intraverbals are the way people engage in conversational language. They are responses to the language of another person, usually answers to "wh-" questions.. If you say to the child "I'm baking..." and the child finishes the sentence with "Cookies," that's an intraverbal fill-in. Also, if you say, "What's something you bake?" (with no cookie present) and the child says, "Cookies," that's an intraverbal (wh- question). Intraverbals allow children to discuss stimuli that aren't present, which describes most conversation and is a goal of Verbal Behavior Intervention.Both ABA and VB use similar formats to work with children. It is said that VB attempts to capture a child's motivation to develop a connection between the value of a word and the word itself. Many therapists are now using techniques of VB to bridge some of the gaps seen in ABA. Click here for alternative treatments.
If you would like to, go onto www.autismspeaks.org for lots more information! Also go and have a look at their wonderful video glossary which really helped me in the early days to see and notice the signs and differences between neuro typical children and kids on the spectrum.
I hope our little crash course in Autism has made you understand it a bit more, i hope you share the enthusiasm , the optimism , the joy and the blessings of the world of Autism. Please share your awareness, please be supportive to families and especially to the amazing kids on this rainbow spectrum. Please be careful not to judge, dont be to quick to shake your heads and think that a child should be disciplined more or that the parents just dont care - we need your understanding and tolerance and support and prayers.
Thank you to you all for your understanding and going out of your way to understand the miracle and gift that is Deqlan - i know so many of you continue to send me interesting articles you find, and send me details on conferences, even links to blogs for diets ! I know some of you are constantly reading about Autism and trying to understand how to make things less stressful for Deqlan and I cant thank you enough - your support means the world to us. Please dont be scared to ask questions at any time! Deqlans prayer army, you have already witnessed the miracle and healing by Our Lord for Deqlan during his fight with neuroblastoma, and friends , i want to tell you to expect another miracle,
WE ARE GOING TO PULL DEQLAN THROUGH THE WINDOW, WE ARE!
God Bless you all, all our love
Mark Samm Deqlan Logan
SACRED HEART OF JESUS, WE PLACE OUR TRUST IN THEE , ALL FOR THEE OH LORD, OH MY JESUS ALL FOR THEE