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Frequently Asked Questions
Listed below are some of the questions we are frequently asked.
Joseph Buxbaum, MD
Although there is no single cause for autism, there were some very well executed studies carried out twenty to thirty years ago clearly showing that autism is primarily genetic. Those studies estimated that about 90% or more of autism could be attributed to genetic risk factors. More recently, those numbers have gone down somewhat. Scientists are now saying perhaps it's only 75 or 80%, but that still makes it one of the most genetically based psychiatric disorders. We don't quite know why those numbers are going down but one possibility is that as the classification for autism spectrum disorders becomes broader, the prevalence of cases with less genetic causes goes up. One way to look at it is that, narrowly defined, autism is the most genetic of all the different kinds of diagnoses along the spectrum. But some of the other forms, such as PDD-NOS, might be slightly less genetic and instead have other contributing factors.
If we accept that a huge part of the risk for autism is genetic, there is of course, not much risk associated with other non-genetic causes, which include the environment. Having said that, many people are looking very carefully at the environment and autism, and I would say that to date there is no compelling evidence for a particular environmental cause that increases risk. Perinatal complications during delivery or exposure to some maternal infections and environmental toxins during pregnancy may be associated with increased risk of autism. But these are preventable forms, and the scientific evidence to support the role of environmental causes of autism is sparse. A second question that comes up quite frequently is whether the environment somehow triggers the genetic change. And again, there is really no data to support that; it a hypothesis that warrants further study, but to date there is no evidence that says that's the case.
Joseph Buxbaum, MD, Jeremy Silverman, PhD
Dr. Buxbaum: We think that the increased prevalence of autism is due to three known factors. The first is that the diagnosis has become much broader. Many years ago autism was very narrowly defined to what we might now call "strict" autism. But nowadays
Joseph Buxbaum, MD
When a child has developed certain skills and then loses them over time, it is considered regression. The types of skills in which a child can regress include motor milestones such as walking and coordination, social milestones such as eye contact and level of engagement, and language milestones such as meaningful word use. A child is only considered to experience regression if he or she had nearly full mastery over a certain skill for a period of three or more months and quite suddenly lost the skill. The degree of a child's regression may vary, and in many cases the child will begin to demonstrate the skill again with the help of therapy.
In determining whether a child may be experiencing regression, it is important to differentiate between true regression, in which a learned skill is no longer present, and plateauing, wherein a child is beginning to evidence skill development and yet remains on the same level rather than achieving greater mastery. The physiological mechanism behind regression is not well understood. Most likely it is indicating to us that the brain needs specific inputs at specific times and that if it doesn't get them during key stages in development, a child might experience regression.
One example of a disorder in which dramatic regression is observed is Rett Syndrome. Rett Syndrome accounts for about one percent of autism in girls and is caused by a mutation of the gene called MECP2. These girls develop typically until Rett Syndrome sets in, at which point they often experience profound regression and lose much of their language and the ability to use their hands in a purposeful manner. There is little question that the disorder is caused by a mutation that's present from conception, which tells us that the brain needs certain genes expressed at certain times, and if there is a failure of one of those genes during development a child can experience regression.
Jeremy Silverman, PhD
Multiple studies, but not all, have found a relationship exists between parental age and the presence of autism. Specifically, there is evidence that the older parents are at the time of conception, the higher the odds are of their children being diagnosed with an ASD. Though the mechanism is not entirely known, there is reason to believe that perhaps as parents are aging there is a greater chance for the occurrence of de novo, or new, mutations in the sperm or egg that are then transmitted to the child. However, advanced paternal or maternal age is not specific to autism and has, in fact, been linked to disorders such as Schizophrenia. Despite this emerging evidence for increasing risk associated with increased parental age, it can be overstated; most couples conceiving at any stage in life will give birth to typically developing children.
Debra Reicher, PhD
Very early signs of autism spectrum disorder include poor eye contact, limited vocalization to get attention, lack of joint referencing, lack of pointing, limited response to name, seeming deaf, lack of developmentally typical separation anxiety, appearing too independent, not imitating, not being proud of acomplishments, and not attracting the attention of caregivers. It is important to remember that no single trait indicates a diagnosis and that it is a collection of symptoms.
Often the first questions parents ask a clinician when they find out their child has autism is: Will our child ever speak? Will he/she be a talker? The answer is you don't know; you never want to give up hope, you never want to take hope away from anyone. The important thing is that you want to give the child a voice. It may not be a vocal voice; rather, it might be a sign, a picture, or another form of augmentative communication. The goal of many Early Intervention therapies is to give the child a way to communicate his/her wants and needs in an appropriate manner.
Deborah Fein, PhD
Given that autism is a spectrum disorder with symptoms that span across a wide range, there is no single best or worst scenario that applies to each child. For our research, we define total recovery, or an optimal outcome, as a child who no longer meets autism criteria based on standardized assessments including the ADOS and ADI (see ADOS and ADI sections of FAQ for explanations). Furthermore, children with optimal outcomes score in normal ranges on measures of social communication and language functioning. Finally, a child who has recovered from autism no longer requires special education placement and can function at grade-level in a mainstream classroom, though they may still require some extra help in certain areas such as reading or math. In my clinical experience and research I have found that somewhere between 15-20% of children with intensive early therapy can reach this kind of outcome.
At the other extreme, I am sometimes asked about what percent of children basically are completely stagnating and make no progress. And I think the answer is zero. All children who receive therapy will learn some functional skills such as toileting and feeding. In terms of language, almost every child can learn to have meaningful communication with adults, though it may consist of simple language or require a Visual Communication System. In the social domain, most children with the help of therapy can learn to attend to adults, have meaningful relationships and relate to other children. The real question is how fast can they progress, and what's the level that they can achieve. I have no doubt though that just about every child can make progress.
These two scenarios, that is, optimal outcome and severe disability are the extremes. Most children fall in between these two outcomes. I have also found that it is impossible to predict which path a child will take when they are very young, so parents need to give them the best therapy they can and the outcome will gradually become clear as the child gets older.
Thyde Dumont-Mathieu, MD
In 2014 the Centers for Disease Control estimated that 1 in 68 children in the US has an autism spectrum disorder (ASD).
Marianne Barton, PhD
The American Academy of Pediatrics (AAP) recommends that doctors administer a validated screening instrument assessing developmental functioning for every child who comes in for a well-child-care visit at nine months, eighteen months and either twenty-four or thirty-months. The two most commonly used developmental screening tools are the Ages and Stages Questionnaire (ASQ), or the Parents Evaluation of Developmental Status (PEEDS). The AAP also recommends an autism specific screening with an instrument like the Modified Checklist for Autism in Toddlers (M-CHAT), at both eighteen and twenty-four-months. These screening tools are validated questionnaires designed to elicit parental report of developmental problems. Studies show that while pediatricians detect some developmental concerns without using a developmental screen, they are much more effective at identifying children with developmental delays when they use a validated screening instrument.
Marianne Barton, PhD
The American Academy of Pediatrics recommends that if children are found to be at risk for ASD with the M-CHAT or another autism specific screener, pediatricians make a referral both for increased diagnostic evaluation and to Early Intervention (EI) services. Our goal is to get young children involved in EI services immediately because the sooner a diagnosis is made the sooner children become eligible to receive services.
Marianne Barton, PhD
The Modified Checklist for Autism in Toddlers (M-CHAT) is a 23 item parent report questionnaire which is designed to look at early signs and symptoms of difficulties in social communication and reciprocal interaction in young children. In 2001, Dr. Diana Robins, Dr. Deborah Fein, and I developed the M-Chat, in an effort to facilitate early screening for Autistic Spectrum Disorders. We created this tool because we became increasingly concerned with the fact that children were not being referred for diagnostic evaluation and, therefore, for services until they were three, four, or even later, missing the best window of opportunity for early intervention. Our goal was to provide a tool that primary care practitioners could use to identify children earlier in development. The M-CHAT has undergone revisions over the years, and the latest version is the M-CHAT-Revised (M-CHAT-R), which shortens the screening to 20 questions.
The questions on the M-CHAT-R consist of a variety of items taken from literature which ask parents to think about the quality of social interaction that they experience with their toddler. Topics covered within these questions include pointing to direct adult attention, pointing to request, eye contact, responding to name, bringing objects to show to a parent, among others.
As part of our efforts to test and validate the M-CHAT we have screened about sixteen thousand children with this measure. When parents complete the measure, if they endorse a certain number of items it suggests the need for further follow up of their responses. We have a follow up interview designed for that purpose, which asks parents to provide more information and further examples about the concerns that they have identified. Both the M-CHAT itself and the follow up interview are available at www.mchatscreen.com for free and should be used as a pair, as part of a total screening process.
Debra Reicher, PhD
Currently, there is no known cure for autism spectrum disorders (ASDs); however, some research indicates that up to 10% of children eventually lose the diagnosis over time given effective intervention. There are many forms of intervention that have variable effectiveness depending on a host of factors.
Applied Behavior Analysis (ABA) is one common therapy that is often used with children on the spectrum. ABA involves systematic instructional and environmental modifications to promote positive social behaviors and reduce or eliminate behaviors which interfere with learning and socialization. ABA uses intense behavioral observation and positive reinforcement, or prompting, to eliminate or encourage a given behavior.
Other interventions, such as Floortime and Relationship Development Intervention (RDI), directly target the social deficits evidenced by children with ASDs and help with skills including joint attention and appropriate play. These therapies typically encourage parent involvement and provide them with tools to promote their children's social development.
Speech therapy can also be an effective component of intervention, occupational therapy can help address the sensory issues than many children with ASD experience, and if the child has gross motor delays, physical therapy may also be recommended.
What are some of the pros and cons of alternative therapy methods such as special diets, chiropractors, biofeedback, and chelation?
Debra Reicher, PhDDeborah Fein, PhD
Reicher: As a parent you will want to do anything to help your child. At the same time, it is important to exercise caution with alternative methods of therapy that have not been empirically validated such as special diets, chiropractors, biofeedback and chelation. Many such treatments are expensive, not covered by insurance and some may be dangerous. I have had some families state that some of these interventions have had some small positive effects. Some families have seen improvement with whey and gluten free diets. I believe that there may be some children with ASD who have food allergies and that removing allergens can result in behavioral improvements. It is important to fully evaluate the safety of these interventions and to be sure a medical doctor is involved at all times. It is also important to recognize that, unfortunately, there are people monopolizing on the vulnerability of families who have children with autism spectrum disorders and to be wary if asked to pay a large sum of money in advance for treatment.
Fein: There is a huge amount of terrible advice out there on the Internet about autism, and parents, understandably, can be very susceptible to believing all kinds of wild claims about cures. The most important thing, of course, is to do no harm. The most important kind of harm, of course, is harm to the child, but one must also consider harm that consists of draining family resources and time, so that more effective therapies are ignored. Before trying any new medications or medical processes, consult your pediatrician to ensure it does not carry the risk of harming your child. I would also advise parents to consider suspect any therapy that claims to cure most or all children. It is also concerning if the only articles supporting a particular type of therapy are written by people who stand to make money from it. In general, there is no empirical support for so-called "alternative"" therapies Ð no evidence that they work. If parents feel they must give one or more of these therapies a try
How many hours of Applied Behavioral Analysis (ABA) therapy are recommended for an optimal child outcome?
Debra Reicher, PhDCarol Stein-Schuman
Deborah: Some studies suggest that the most effective amount of Applied Behavioral Analysis (ABA) is 30-40 hours of one to one instruction per week. This may be excessive for some toddlers and developmental level must be considered when making a decision regarding the number of hours. Most families begin with a smaller number of hours, such as 5-10 per week, and slowly increase if the child is responding positively.
Carol: When parents first hear their child is on the spectrum, they often try to get him/her 40 hours a week of therapy. However, over the past decade or so we have seen that a child can often achieve the same amount of progress with 20-25 intensive one-on-one hours a week. It is important to take into account the child's age and bear in mind that 40 hours of intensive therapy a week may be overwhelming for very young children, as well as their families. Rather than having so many hours of structured therapy, a parent can reinforce many of the skills taught in therapy sessions in natural environments. For instance, bath time is a great opportunity to practice colors, have a child identify different animals and ask questions to encourage communication.
TEACCH is a methodology that stands for Treatment and Education of Autistic and Related Communication Handicapped Children. It provides a very structured way of looking at the environment to address the fact that children with autism often tend to prefer sameness. The TEACCH methodology provides the setting with physical organization of space, schedules, individual work stations and visual cues. When children with autism know what is expected of them and follow a routine/ schedule, it often eases their anxiety and enhances their ability to navigate the classroom. Knowing what activity is going to come next often leads to smooth transitions between tasks. The tasks that the children are asked to complete are also very structured: they all have a beginning, middle, and an end. While many Early Intervention programs are not TEACCH programs, teachers/therapists may incorporate some elements from the TEACCH methodology into their program.
Marianne Barton, PhD
Applied Behavioral Analysis (ABA) is a type of therapy that uses goal-driven, one-on-one sessions to teach children specific tasks in a very structured, data-driven format. One of the great advantages of ABA is that tasks are broken down into small component parts. Each tiny skill is then taught, and then those skills are put back together into more complicated skills. Applied Behavioral Analysis is the most widely studied early intervention form available and it is the form about which we have the best data. It truly is a very effective intervention for many children who receive these services at a sufficient level of intensity. With very young children we have to pair it with highly positive emotional experiences with lots of positive encouragement, support, and some measure of developmentally appropriate activities. So we have to make some modification with our youngest children, but is still a behaviorally oriented data driven process.
Deborah Fein, PhD
There is a very informative book called Effective Early Interventions (1997) by Michael Guralnick, PhD, in which Geraldine Dawson, PhD and Julie Osterling, PhD have a chapter identifying six characteristics of intervention programs inherent in effective therapies for children with autism. The first characteristic is a program that is highly structured and teaches specific skills that include generalization strategies. This means that after a child learns a skill, he or she is taught to generalize it to other situations and to practice it with different people. The second characteristic of effective programs is predictability and routine, so that the child knows what to expect, thus creating a predictable flow and rhythm. The third characteristic is that a therapy program include a method for handling problem behaviors or interfering behaviors. The fourth characteristic is that a program involve parents and teach them how to help their child practice skills at home and apply them in different situations. The fifth characteristic is that the program include some planning to help the child smoothly transition and acclimate to a classroom. The sixth characteristic of effective programs is that they include specific curricular elements, such as teaching the child receptive and expressive language, toy play, imitation, and understanding facial expressions. Reviews of therapies for children with ASD generally find that therapies based on the principles of Applied Behavior Analysis are the most effective.
Many speech therapists use a total communication approach for children who are non-verbal. The goal is to use any method or combination of methods to enable the child to functionally communicate. This could be sign language, pictures, or an assistive device depending on the specific child's abilities. There are also some prerequisites for each method. For instance, in order for children to be able to use pictures they must understand that the picture is a representation of an object. Further, to use sign language children need to have the fine and gross motor skills to physically be able to form the signs. Research has shown that in some cases teaching a non-verbal child to use sign language and/or pictures improves the chances that the child will develop verbal language.
Marianne Barton, PhD
As part of the Individuals with Disabilities Education Act (IDEA), federal law mandates that infants and toddlers with disabilities receive Early Intervention (EI) services from birth to age 3. According to the law, each state must establish criteria determining which children are eligible to receive services and then ensure that children who meet those criteria are provided with intervention services. The organization, provision, and types of services offered varies across states. For children who have a diagnosis or are suspected of meeting criteria for a diagnosis of autism spectrum disorder, most states will provide speech and language therapy, special education services, and often occupational therapy. Many states also provide Applied Behavioral Analysis (ABA) services.
It is fairly simple for parents to access early intervention services. There is a central Early Intervention hotline for each state. Once parents, or in some cases pediatricians, make that call, the child will be evaluated to determine his or her eligibility to various services. These evaluations are typically conducted in families' homes and are conducted by of a team of evaluators who assess various aspects of a child's development. Following the evaluation, the EI service coordinator will sit with families and talk about the services available and the nature and extent of services the family might wish to employ for their child. In most cases, intervention services are provided in the home, although if the child is in day care or in a different childcare arrangement, services can be provided in other settings.
In many cases parents have to advocate on their child's behalf for greater intensity or variety of services. Pediatricians are also often asked to advocate in cases where a family believe their child deserves more services than he or she is being given through the state.
The cost of Early Intervention (EI) services varies considerably from one state to another. Though EI services used to be provided for families free of charge, that is no longer consistently true. Often families are asked to pay a fee for services along a sliding fee scale.
When choosing a center-based program or preschool, parents should first identify their child's strengths and weaknesses and then try to find a program that will teach the child using the child's strengths and work on improving his or her weaknesses. For example, if a child is not yet a talker, parents should find a program that stresses the use of language throughout the day. If a child has difficulty with social skills, then his or her parents should look for a program that emphasizes social skills and encourages interaction with peers. It is often advantageous if parents are able to visit schools to determine which programs would be a good fit for their child as well as for the family as a whole. Parents should also look at the Education and Behavioral Philosophies of the program and decide if they would be appropriate for their child. The program should meet the individual needs of the child; The child should not have to fit into a particular program.
It is also especially important to look at the team that exists at each program. This team may consist of the teacher or teachers, a speech pathologist, an occupational therapist, and often a physical therapist. What you want to look for is a team that has a philosophy and core beliefs of what they want to accomplish and have a plan of how they are going to reach these goals.
Another critical part of a successful program is whether or not it is data-driven. A program should initially use an assessment tool to determine where to begin teaching. Every program should then have some way of measuring progress after a base line or starting point is determined. Two commonly used assessment tools developed specifically for children on the autism spectrum are the Assessment of Basic Learning and Language Scale (ABLLS-R) and the Verbal Behaviors Milestones Assessment and Placement Program (VB-MAPP).
One other key element of a successful center-based program is whether or not they view parents as true partners in the child's development. Parents are with their child most of the day, every day, where as the child may only be at school for two to five hours a day. Therefore, good programs really need input from the parents and must consider them a critical part of the team. As a parent, it is helpful to communicate with the teachers perhaps through a journal or e-mail so that you can see what assessments were done, what skills are being worked on, and what progress has been made. The parents and the school should work together in creating goals and working towards these goals in a variety of environments, to enable the child to generalize the skills learned in a one-to-one setting into the natural environment.
Debra Reicher, PhD
In many cases, schools tend to be quite effective settings for therapy in that they provide excellent opportunities for learning and socialization. However, I typically do not recommend sending children to school before the age of two or until they are at a developmental level where they can tolerate being in a classroom for several hours around other people. Often intensive one-on-one Applied Behavioral Analysis (ABA) therapy at home or in another non-school setting is useful in helping children progress to the point where they will be ready to attend school and reap all its benefits. It is also important to take into account issues such as napping and separation anxiety when considering sending your child to a school based program.
A school based early intervention classroom is typically taught by a master's level special education teacher along with several qualified teacher assistants or aides. School based programs can be half day or full day, and with or without ABA. Recommendations about particular classrooms, student-to-teacher ratios, and in-school therapies depend on the level of functioning of the child and his or her needs. A good ABA early intervention class will include time in the day for socialization and free play.
Danielle Halpern, PsyD
There are many resources available for families who have children with autism. Many cities and towns will have local programs through community centers, religious organizations and schools. It can be helpful to contact nearby universities, hospitals and research centers to see if they are offering any services or programs for children with autism or their families. The Internet is also a great forum for learning about your child's diagnosis and intervention strategies, as well as connecting with other families.
Debra Reicher, PhD
The role of extended family is extremely important in today's society. Very often extended family members such as grandparents and aunts/uncles are responsible for the caretaking of ASD children for small or extended periods of time. Often parents express that it is difficult to explain the diagnosis of ASD to their families. Many times I am told that extended family members do not believe there is anything wrong; "Uncle Sammy didn't speak until he was four. Leave well enough alone. He is a boy."" These are all common statements.
It is often a difficult and confusing time for extended family as well. I offer to see any concerned family member to explain my findings and have met grandparents
Debra Reicher, PhD
The Diagnostic Statistical Manual (DSM), which is the standard handbook for making psychological diagnoses, does not specify a lower age limit to diagnose a child with autism. Eighteen months is probably a safe lower age limit; however, in some cases it can be diagnosed earlier. There are currently tools in development that are designed to more reliably diagnose autism in very young children. If parents have concerns they should trust their instincts and seek the help of a professional.
Debra Reicher, PhD
Autism spectrum disorder (ASD) is a clinical diagnosis, meaning that though there are tools available to assist in making the diagnosis, the results the tools yield must be interpreted by a trained clinician. A skilled psychologist, neurologist or developmental pediatrician often conducts an extensive evaluation using instruments or tools including the Autism Diagnostic Observation Schedule (ADOS), the Autism Diagnostic Interview (ADI), the Modified Checklist for Autism in Toddlers (M-CHAT), the Childhood Autism rating Scale (CARS), and the Child Behavior Checklist (CBCL).
The ADOS and ADI are often considered the gold standards for diagnosing autism. The ADOS is a standardized observation of communication, socialization and repetitive behaviors that enables one to assess a child across a variety of semi-structured situations. The ADI is an extensive parent interview that focuses on a child's development, including past and current behaviors in the areas of language and communication, reciprocal social interaction, and repetitive and restricted behaviors. The CARS is a behavior rating scale which includes items that address areas of functioning often affected by ASDs. The CBCL is a questionnaire completed by caregivers and/or teachers about certain traits such as aggression, anxiety, depression and social problems.
The evaluation of a child often includes a combination of the child's scores and profiles on some of these instruments as well as astute clinical observation, since these assessments alone can not be used to make a diagnosis. Rather, assessments inform the diagnosis, which is ultimately at the discretion of the specialists evaluating the child.
Debra Reicher, PhD
PDD-NOS stands for pervasive developmental disorder - not otherwise specified. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV, pervasive developmental disorders are comprised of a large range of disorders including autism, Asperger's and childhood disintegrative disorder (CDC). PDD-NOS is another type of pervasive developmental disorder that is defined more generally and describes a group of children who have severe and pervasive impairments in certain domains. Specifically, they show abnormalities in social interaction, deficits in verbal and nonverbal communication skills, or the presence of stereotyped behaviors, interests and activities. However, the criteria are not met for another pervasive developmental disorder and therefore they receive a diagnosis of PDD-NOS.
PDD-NOS is sometimes used to refer to atypical autism or "Autism light"". Professionals sometimes use this diagnosis in very young children or if there are severe developmental delays in many areas and it is hard to decipher the social communication piece. In my experience
Debra Reicher, PhD
It is difficult to determine a prognosis for a child, especially if he or she is under three years of age. The predictive validity of testing increases as a child gets older. Some of the characteristics that point to a more favorable outcome for toddlers with autism spectrum diagnoses include cognitive skills within the average range, the development of language, and positive attachment behavior. This underscores the importance of beginning interventions as early as possible.
Debra Reicher, PhD
Asperger's disorder is distinguishable from autism spectrum disorder in that with Asperger's there is no clinically significant general delay in language or cognitive development. Further, individuals with Asperger's often demonstrate age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood, whereas this is not the case for children with autism. Many children initially diagnosed with an autism spectrum disorder (ASD) may improve cognitively and communicatively and go on to look much like a child with Asperger's disorder as they mature.
Asperger's disorder is often missed early on and diagnosed in school aged-children as the deficits may be more subtle in early childhood. These children may have sophisticated vocabularies yet not be able to engage in reciprocal conversation. They tend to have pragmatic deficits and do not regard the listener in conversation. Often, children with Asperger's disorder develop special interests for which they know excessive detail. For example, knowing all the capitals on the map, memorizing train schedules or a preoccupation with the weather. These children also tend to be concrete in their thinking, despite at least average cognitive capacity, and can be overly rigid and rule-bound, which may impede forming friendships. Social skills groups and training are often essential components of therapy for children with Asperger's disorder.
Joseph Buxbaum, MD
Research has fairly conclusively eliminated the notion that vaccines play a role in autism. There have been at least a dozen very large, well-designed studies using various methods across several countries looking at the role of vaccines in autism, and they all validated the same conclusion: vaccines are not contributing to increased risk for autism. We also know that not vaccinating children puts them at risk of contracting infectious diseases. Parents who opt not to vaccinate their children should be aware that their child is still just as likely to be diagnosed with autism as children who are receiving their vaccinations. The symptoms for autism tend to develop around 18 months, the same time that many children are scheduled for their childhood immunizations. Thus, it may appear to some parents that they are related. We all want to understand what happens in our lives and to our children in particular, so it seems easy and perhaps logical to attribute the disorder to the vaccines. However, it is important for parents to know that there are no scientific data supporting that claim, especially when making decisions about their children's health.
Debra Reicher, PhD
The Autism Diagnostic Observation Schedule (ADOS) is a diagnostic assessment often used as part of a comprehensive evaluation. This instrument is often considered one of the gold-standards for diagnosing autism spectrum disorders (ASDs) especially when used in conjunction with the Autism Diagnostic Interview (ADI).
The ADOS is organized into four modules based on the individual's age, level of functioning and speech/language development. This tool uses a variety of semi-structured activities that allow clinicians to assess an individual's functioning across three domains: communication, socialization and repetitive behaviors. Some of the possible deficits assessed in the communication domain include lack of spontaneous language, social communication and nonverbal behaviors and atypical language usage (e.g. echolalia). The social domain assesses an individual's level of social communication, interest in social interactions, facial expressions, and social responsiveness. The final domain includes observations of unusual sensory patterns, hand & finger mannerisms, self-injurious behavior, and unusually repetitive or stereotyped behaviors throughout the assessment.
Debra Reicher, PhD
The ADI is an extensive parent interview that focuses on a child's development, including past and current behaviors in the areas of language and communication, reciprocal social interaction, and repetitive and restricted behaviors. This instrument is often considered one of the gold standards for diagnosing autism spectrum disorders (ASDs) especially when used in conjunction with the Autism Diagnostic Observation Schedule (ADOS).
Debra Reicher, PhD
A diagnosis of an autism spectrum disorder (ASD) impacts the entire family and the impact of an ASD diagnosis affects siblings on various levels. Initially, the diagnosis and intensive, often home-based, therapies may divert attention from other children in the family. It is important for families to be aware of this and schedule special one-on-one time for the child without the diagnosis. As the sibling of a child with an ASD becomes older, he or she may notice that his or her brother or sister behaves differently than other children. Tantrums, unusual body movements and vocalizations may draw attention in public and be embarrassing. As a result, some siblings may be reluctant to invite friends to their home. Siblings may also become frustrated or feel rejected after repeated strained attempts at social interaction. Parents can model and teach the siblings of children with an ASD how to play and interact with their brother or sister. Siblings may also be concerned about their parents' stress and grief over the diagnosis.
Additionally, siblings may also worry about the future, and how their brother or sister will learn and progress. Many organizations offer sibling support groups which provide a safe and therapeutic environment to discuss these issues. Parents should begin discussing autism early on in developmentally appropriate language so that siblings have a greater understanding of their brother or sister's disorder. This heightened comprehension may ultimately help the sibling cope with the host of challenges he or she may face.
Debra Reicher, PhD
As young children with autism display a wide range of issues which can span across all areas of development, a comprehensive and multidisciplinary evaluation is necessary. This process requires experts from various disciplines who are familiar with autism spectrum disorders (ASDs) as well as early childhood development. The diagnostic process can vary dramatically across centers and service providers. However, there are several components of an evaluation process that are likely to remain consistent. The multidisciplinary team often consists of a diagnostician (a psychologist, psychiatrist or developmental pediatrician), social worker, speech/language pathologist, occupational therapist, and/or physical therapist. Each team member draws on his or her expertise in order to gain a comprehensive understanding of the child's symptoms and ultimately will make recommendations to assist in treatment. In some cases the initial point of contact is with a social worker. The social worker obtains a detailed psycho-social history including all relevant information regarding developmental milestones, past diagnoses, medical issues and treatment. The social worker often plays a vital role in setting the emotional climate for the family and explains how the process will unfold. S/he also sometimes plays a role in relaying feedback from the diagnosticians to the family and may remain in contact with the family to address ongoing concerns.
It is also important to have any child suspected of having an ASD assessed by specialists, including developmental pediatricians or pediatric neurologists. These doctors will test for any organic bases for the displayed delays or behaviors. A neurologist may wish to refer the family for genetic testing to rule out genetic disorders that result in some behavioral and symptomatic overlap with ASD, such as Fragile X, Angelman's, Prader Willi and Retts Disorder.
Once the child is seen by a medical doctor, a cognitive assessment should be conducted by a psychologist. This enables the team to obtain a baseline of developmental abilities. Commonly used instruments include the Bayley Scales of Infant Development and the Mullen Scales of Early Learning. An additional measure of adaptive behavior should also be obtained via administration of an instrument such as the Vineland Adaptive Behavior Scales with the parent(s). Typically children with ASD manifest deficits in communication and socialization on adaptive measures regardless of cognitive functioning. Often the next step in the diagnostic process is a comprehensive diagnostic assessment utilizing the Autism Diagnostic Observation Schedule (ADOS). This is a standardized, semi-structured instrument comprised of activities designed to elicit social and communicative behavior such as joint referencing, requesting, and eye contact. The ADOS is organized into four modules based on the individuals age, level of functioning and speech/language development.
An assessment often used in conjunction with the ADOS is the Autism Diagnostic Interview (ADI), which is a structured parent interview that focuses on a child's development. During an ADI parents are asked about their child's past and current behaviors in the areas of language and communication, reciprocal social interaction, and repetitive and restricted behaviors. Parent report is an important part of the evaluation process because no one assessor can establish a complete picture of a child, even across several visits. Since the ADI is a lengthy assessment, evaluators may use an abridged version of it to gain information about a child's early development and social communication. A behavioral checklist may also be utilized to gain additional information.
Once an ASD diagnosis is suspected or confirmed it is useful for a speech and language pathologist trained in the evaluation of young children and ASDs to conduct a comprehensive assessment of communication. An occupational therapy evaluation is often useful to assess both fine motor skills and sensory functioning. Many children with ASDs have sensory issues which impact behavior and an occupational therapy evaluation can provide useful additional information. Physical therapy assessments are also important if there are concerns about the child's gross motor skills.
The final phase of most multidisciplinary evaluations is some sort of feedback session. This is optimally conducted with all members of the multidisciplinary team as well as the parents or caregivers. The family should be given copies of all reports which conclude with specific recommendations for intervention as well as follow-up. It is important to note that due to the rapidly changing behavior of babies and young children, diagnoses in very young children should be made cautiously and revisited periodically.
Alexander Kolevzon, MD
In most cases, the diagnostic process includes a psychiatric evaluation. During this evaluation, psychiatrists collect information about the medical and developmental history of the child, the parent's current concerns, and the child's presenting symptoms. Psychiatrists will also talk with the parents about issues pertaining to early development such as pregnancy and any history of neonatal complications. They also ask about language, motor, and social milestones.
During an evaluation, psychiatrists also initiate interactions with the child by engaging him or her in some direct play and exercises. Psychiatrists may also ask the parents to try to interact with their child in specific ways to observe the child's response. All of the exercises are designed to try to elicit certain behaviors including eye contact, response to name, reciprocal play, receptive language and expressive language. Once psychiatrists have completed the evaluation, they typically discuss their findings with other assessors involved in the diagnostic process to make a diagnosis.
Debra Reicher, PhD
Parents often are nervous about the possibility of having their child receive an autism spectrum diagnosis or label. It is important to remember that a diagnosis is a specific set of symptoms or characteristics that help us understand what's happening, and more importantly, determine which interventions are appropriate for a particular child. A label does not define a child. The label of autism is often dreaded due to common misconceptions about the diagnosis.
First and foremost, it is a spectrum diagnosis meaning that a child's symptoms can vary across a wide array of behaviors; thus, children with a diagnosis of autism spectrum disorder often present quite differently from one another. When I give a diagnosis, I try to appreciate the anxiety families have about autism. I set aside time at the end of evaluations to answer all questions and thoroughly explain the diagnosis to parents. I always remind families that their child is still the same individual he or she was before diagnosis and that the label will enable the family to understand their child in a different way and access the most appropriate services. Parents are often also concerned that once professionals and school districts label their child with an autism spectrum disorder, it will be impossible to remove the diagnosis. However, in my experience, Early Intervention providers and school districts are more than happy to remove a diagnosis if a child no longer meets the diagnostic criteria.
Andrew Adesman, MD
As a developmental pediatrician, I specialize in the evaluation and management of a range of developmental and behavioral problems. I might see a young child that was a former premature baby and assess that child's risk status for later problems, or I might see a pre-schooler who is a late talker, or for that matter, a pre-schooler whose parents have concerns about autism.
Autism is generally a clinical diagnosis based on history and observation. When evaluating a child in my office for autism, I always begin with a good history of the child's development. I want to know how the child is currently functioning in terms of language, socialization and the nature of their play. For example, does the child seem to play with age-appropriate toys in a typical way, or does he or she seek pleasure in atypical ways - such as rocking, spinning, or flapping their hands. It is important to not only ask about current skills, interests, abilities, and behaviors, but to also inquire about the child's developmental "trajectory" - in other words
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