A. ABOUT DIAGNOSIS
What is autistic disorder and how does it differ from autism spectrum disorders?
The term Autism Spectrum Disorders (ASDs) refers to a group of neuro-developmental disabilities characterized by impairments in social relationships and communication, with excessively narrow interests and/or repetitive routines. ASDs include Autistic Disorder, Pervasive Developmental Disorder Not Otherwise Specified and Asperger's Disorder.
Autistic Disorder is a type of autism spectrum disorder characterized by a combination of qualitative impairment in social interaction, qualitative impairments in communication and restricted repetitive and stereotyped patterns of behavior, interests and activities, with an onset prior to 36 months of age. See DSM-IV 299.0 for details. Autistic Disorder differs from PDD-NOS in that PDD-NOS is used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal and nonverbal communication skills, OR with the presence of stereotyped behavior, interests, and activities. In other words communication dysfunction AND repetitive stereotyped behavior are NOT both necessary for a PDD-NOS diagnosis, but they ARE necessary for an Autistic Disorder diagnosis.
I’ve heard there is more than one type of autism? Is that true and how do they differ?
Dr. Judith Miles and her colleagues at the University of Missouri Medical Center identified two main types of Autism: Complex and Essential Autism. In Complex Autism children typically exhibit subtle physical features that appear different from their family's (e.g. ears, teeth, spacing of eyes). It is associated with more severe disability, lower IQ, more language and social impairment, more EEG and MRI abnormalities. Complex Autism does not run in families. Sex ratio is 3:1. Response to treatment is usually less favorable. In Essential Autism the children typically do not exhibit any physical differences (called dysmorphic features), they have higher IQs, stronger language and social skills, and are less likely to show EEG or MRI differences. Response to treatment is usually more favorable. Essential Autism is more likely to recur within the same family (e.g. siblings, cousins), and the male to female sex ratio is twice as high as in Complex Autism. (see Miles et.al. 2005) Amer. J. Med. Genetics, Part A. 135 (2) 171-180.)
What is Asperger’s Disorder? How is it different from autism?
Asperger's Disorder is an autism spectrum disorder first identified by Hans Asperger in Austria in 1944. According to DSM-IV (299.80) children with Asperger's Disorder have qualitative impairment in social interactions, restricted and stereotyped interests, causes clinically significant impairment in social and other important areas of functioning, no significant delay in language development and no significant delay in cognitive development or age appropriate self-help skills.
Why does my child have to be assessed with the ADOS?
Autism Diagnostic Observation Schedule (ADOS) is a complex diagnostic procedure for differentially diagnosing autism spectrum disorders that was developed by Lord, Rutter, DiLavore & Risi in 1999. The ADOS is intended to be used by experienced clinicians; training in their use is necessary. For these reasons, and because of their length, they are most appropriate as part of a comprehensive evaluation within specialty clinics. The ADOS assesses the diagnostic criteria of the current DSM-IV and ICD-10 criteria and quantify separately the three domains that define autism spectrum disorders: social reciprocity, communication and restricted, repetitive behaviors and interests. It takes about 45 minutes to administer. Most experts consider it the "gold standard" in autism diagnosis. It differs from the M-CHAT and CARS that are used for screening for possible autism.
What is Regressive Autism? Is it the same as Childhood Disintegrative Disorder?
Childhood Disintegrative Disorder (Heller's syndrome) is form of ASD described by an Austrian educator, Dr. Theodor Heller in 1908 (hence it is sometimes called Heller's Syndrome). The child develops apparently normally until 2-3 yrs then loses language, social, fine and gross motor skills and often toileting deteriorates and even eating skills deteriorate. Once regression has begun, the child's characteristics are indistinguishable from severe autism. Some researchers believe it is a specialized form of regressive autism, others think it is a separate disorder. Regressive autism occurs in about 1/3 of cases of autism but is generally not as severe deterioration as in Heller's Syndrome. The child appears to develop normally until 18 months to 2 years of age, then begins losing language and social skills over the next six months and by the time the child is 3 years old exhibits characteristics of moderate to severe autism. No one knows the cause of regressive autism. It is more common in Essential Autism, the type of autism that runs in families.
Can a child have autism as well as another disability?
The answer is "yes" and "no". A child can be diagnosed with autism and have another developmental disability, such as Down Syndrome, Congenital Rubella Syndrome, Fragile X Syndrome or Fetal Alcohol Syndrome. But according to DSM-IV if a child also has Childhood Disintegrative Disorder or Rett's Disorder, then they should not also be diagnosed with autistic disorder. Similarly, child with autism cannot also be diagnosed using DSM-IV criteria as having ADHD, though many children with autism have most of the features of one or the other form of ADHD, and many doctors treat such children with medications for ADHD. Most experts believe that damage to areas of the developing brain that are known to be involved in autism can come about many ways, including from other disabilities. Those children will often have features of both disabilities and should be treated accordingly.
B. ABOUT AUTISM FEATURES
My child’s speech therapist says she exhibits echolalia. Should I be concerned about it?
Echolalia is form of speech common in very young typical children and children with autism in which the child repeats back to a speaker exactly what they have said. A parent may ask a child with autism, "What did you do in school? And the child with autism may reply, "Do in school". Echolalic verbalizations are repeated over and over rather than just once. Some echolalia involves repeating television ads, phrases from songs or nursery rhymes, without regard to the context. Echolalia may be immediate in response to a spoken utterance by another person, or delayed (e.g. repeating at TV ad hours later). Echolalia is a form of speech but usually does not communicate information. Children with ASDs who are 2-3 years of age and exhibit echolalia are more likely to develop spoken speech than similar children with ASD who do not speak at all at the same age.
My child hand-flaps, especially when he is excited or upset. Will this go away?
Stereotyped movements are repetitive, seemingly driven, and nonfunctional motor behavior (e.g., hand shaking or waving, body rocking, head banging, mouthing of objects, self-biting, picking at skin or body orifices, hitting one's own body. Stereotypes are most common during periods of boredom (e.g. sitting in front of a TV) and intense excitement or anxiety. At times self-stimulation is an avoidance response as well. The importance of intervening quickly to reduce self-stimulation depends on the age of the child, how pervasive the self-stimulation is, and the situation. In IEBT for children with autism, it is difficult to teach a child appropriate skills when they are hand-flapping, rocking or waving their head from side to side. As a result, therapists attempt to reduce self-stimulation by engaging the child in rewarding activities that are incompatible with self-stimulation. The older the child and the more pervasive self-stimulation is, the more important to intervene to reduce the behavior.
Sometimes I have the impression my son, who is diagnosed with PDD-NOS, understands much more than he lets on. Is that possible, and how do we know what he really understands?
Children with ASDs often understand aspects of what is said to them, but may not really grasp the entire meaning. Dad may say, "Grandma is sick and in the hospital. We're going to visit her after lunch". The child may understand "Grandma is sick" and that "We're going to visit her after lunch", but not really understand what it means to be so ill she's in the hospital, and may expect that the family is going to Grandma's house after lunch. You only know what your child understands when he can appropriate act on what you say to him or her. High functioning children with Asperger's Disorder or PDD-NOS frequently repeat extended phrases and even sentences in an echolalic way, with limited understanding of their meaning. They may say entire sentences about dinosaurs or cloud formations, but not understand anything about the context of those sentences (e.g., when did dinosaurs live and what does humidity mean?).
"My daughter with autism doesn't like to wear certain coarse fabrics. Is there a treatment for that problem?" A variation on the same question: "Our son with Asperger's hates high frequency sounds, like fire engines, sirens, whistles, etc. What is the best treatment for that?"
Children with autism often have strong dislikes for some tastes, textures or other tactile stimulation. Some children have similar reactions to certain frequencies of sounds. At times these dislikes are stable over prolonged periods and at other times they come and go, lasting for days or a few weeks at a time. Some Occupational Therapists use a form of desensitization to increase tolerance for different textures, tactile stimulation or tastes. They begin by gradually introducing the disturbing stimulation briefly and making certain that it is removed before the child reacts negatively. By progressively increasing the duration and intensity of exposure to the disliked stimulus over weeks and even months, most children with ASD will eventually adapt to them, especially if something positive happens immediately following stimulus exposure, like playing a preferred game or having a treat. In IEBT, Behavior Therapists often use the same procedures. The research literature on Sensory Integration Therapy (see Glossary) suggests that the usual techniques used in SIT have only temporary and minimal effects on this type of hypersensitivity to unfamiliar stimulation.
Our son with Asperger's Disorder gets "stuck" doing things over and over until it drives everyone in the family to distraction. For a while it was turning light switches on and off, then it was opening and closing doors. What can we do to stop this?
Compulsiveness is one of the most core features of autism, and is present to some degree in all people with ASDs. Kanner described it as "insistence on sameness", doing a given thing repeatedly, exactly the same way. It is not willful stubbornness or being intentionally oppositional. You may have seen the television program "Monk" about the detective with Obsessive Compulsive Disorder. Just as Lieutenant Monk has no idea why he has to straighten objects and make sure items are in the correct order, neither does your child. All your child knows is that it needs to be that way.
If a preferred or expected routine is disrupted children with ASD typically become very upset, cry and may have a tantrum or "melt down". There are several ways of dealing with compulsivity. First, it is important to recognize that the more anxious the child is in general, the more they are likely to engage in compulsive rituals. That means if one can identify anxiety-provoking situations, and help the child avoid them or negotiate around them, compulsiveness will be less disruptive. Second, tell the child in advance exactly what is going to happen and when. For example say, "You can turn on the light once", and then we're going to have breakfast. If the child turns on the light more than once, delay breakfast. Make the child stop and wait for several seconds without flipping the switch and say, "OK, it's time for breakfast". Repeat that procedure over the course of the day with drinks of juice, watching a preferred video, lunch time, etc. Third, negotiate with the child. Let's say the child always must be go first when entering the family's car. Before leaving the house say, "Today I'm going to get in first, then you can get in." Repeat the instruction. Then add, "As soon as we're in the car you can have your I-Pod". Show the child the I-Pod. The child may fuss or cry, insisting that he go first. Ignore the fussing. Get in the car; say "OK, now you get in the car…. Great! Here's your I-Pod". If the child tries to enter first, gently restrain him and repeat, "Today I'm going to go first, then you can get in." The first few times the child will cry and may be disruptive, but after 3-4 repetitions, he will accept the new arrangement. The important thing is that the child learns that you always keep your word. If you tell him he can get in the car next and have his I-Pod, then it is essential you honor your promise.
C. ABOUT INTENSIVE EARLY INTERVENTION
What does "evidence-based" treatment mean? Does it really make a difference?
Evidence-based treatment is the conscientious and judicious use of current best evidence in making decisions about the care of individuals. That means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise is meant the proficiency and judgment that individual clinicians acquire through clinical experience and clinical practice. By best available external clinical evidence is meant clinically relevant research into the accuracy and precision of diagnostic tests (including the clinical examination), treatment predictors, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence can invalidate previously accepted diagnostic tests and treatments and replace them with new ones that are more powerful, more accurate, more efficacious, and safer. (Excerpted from Sackett, Rosenberg, Gray, Haynes, and Richardson (1996) Evidence-Based Medicine: What it is and what it isn't. British Medical Journal 312: 71-2)
What is ABA?
Applied Behavior Analysis (ABA) is the application of scientific principles of behavior analysis to improving the behavior and functioning of people in a variety of applied settings. There is the common belief that ABA refers specifically to a type of therapy for children with autism developed by Ivar Lovaas. That is incorrect. Autism ABA therapies vary considerably and include "Verbal Behavior", Pivotal Response Training, Incidental Teaching, as well as Lovaas' Discrete Trial method. All employ the same common principles outlined in an article: Baer, D, M., Wolf, M. M., Risley, T. R. (1968). There are some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1): 91-97 but differ widely in details about how those principles are applied.
What is a Behavior Therapist? What do they do?
In home-based Intensive Early Behavior Therapy, a Behavior Therapist (BT) works with each child with an ASD individually to teach core skills that are central to the deficits of autism. A Behavior Therapist has a Bachelor's degree or equivalent experience working with children with autism and/or related disabilities. A BT must have a minimum of 2000 hours of experience to be Mental Health Practitioner. BT's typically have had coursework in applied behavior analysis, childhood development or related programming, and supervised experience working with children using behavior analysis principles or techniques. BTs are supervised by a Senior Behavior Therapist and a Treatment Supervisor who are typically Masters level staff with many years of experience working with children with autism, developing treatment programming and teaching staff and caregivers to implement ABA techniques. Our Treatment Supervisors are Masters Level Board Certified Behavior Analysts (BCBA) with 10-17 years of experience.
What is Discrete Trial Therapy? How does it differ from other approaches?
Discrete Trial Therapy (DTT) is an approach to behavior therapy in which opportunities for learning a skill are provided one trial at a time by presenting a stimulus (or cue) and rewarding correct responding (e.g. pointing, naming) to that stimulus. Trials are separated by inter-trial intervals during which no cures are presented and responses are either precluded or are not reinforced. DTT is useful when first beginning therapy with a child with poor attention and very limited skills, or when introducing a new, difficult task. Very few IEBT programs use DTT methods exclusively throughout all therapy. DTT is distinguished from Incidental Teaching, in which a skill is taught within typical daily activities rather than at a table or in a more isolated situation designated for therapy. Both approaches are useful at different points in therapy, depending on the child's characteristics.
At what age should a child begin intensive early behavior therapy?
Studies indicate that children make the greatest progress most rapidly when beginning therapy around 2-3 years of age, as opposed to beginning later (e.g. 4-5 years old). This may be for two reasons. By the time a child is 4-5 years old they have developed strongly ingrained, often maladaptive ways of coping with their deficits that have to be unlearned before they can learn more appropriate skills. Secondly, the period of most rapid formation of new brain connections is from 1-4 years of age, which makes it easier to learn new skills during that time period. Generally speaking IEBT does not begin beyond 5 years of age.
How many hours of IEBT per week are needed to produce gains?
There have been no well-controlled studies with comparable groups of children with ASDs that have clearly shown the optimal hours of therapy per week. Most evidence suggests a minimum of 25 hours of week is necessary on average to make major gains. We usually recommend 25-40 hours per week for the first year based on the recommendations of the National Academy of Sciences and the State of New York reviews of best practices in educating young children with autism spectrum disorders, and clinical experience from the various programs working with young children with ASDs. Depending on a child's progress, the weekly hours may be adjusted accordingly.
Should children be pulled out of school to participate in IEBT?
Not necessarily. It is important that preschool children with ASD have opportunities for interactions with same age typical peers. At the same time, parents usually find it necessary to make adjustments in other therapies, lessons, etc. in order to free up enough hours during the week to receive the recommended hours of IEBT and also participate in school programs. This is an individual decision for each family as he child's needs are very different.
What kind of progress and outcome can we expect for our child with autism?
Before therapy begins there is no certain way to predict the outcome. Several factors predict better outcomes, but they are not perfect predictors: (1) IQ above 50 (2) motor imitation (3) verbal imitation (4) joint attention. Nearly all children improve substantially in the course of IEBT; however some clearly function in ways that are more like their typical peers than others. Usually within 3-6 months the therapy team will have an idea how rapidly your child is learning, which will give a better idea of the likely outcome. Children who learn new skills very rapidly, especially communication and social skills, have a much better chance of being able to participate in regular education classrooms by age 5 or 6 than those that have great difficulty learning those most basic skills.
What proportion of children receiving 2-3 years of IEBT recover?
If "recovery" means a child with a disability will be exactly like other children his or her age in every respect, no children ever recover from any disability. We believe that is not a helpful goal. We have concluded based on the research literature and our own clinical experience a more meaningful goal is to enable as many children with ASDs as possible to function sufficiently well that they can be active members of their families, participate in community activities and function effectively in school. Roughly half of children receiving 2-3 years of IEBT will eventually function sufficiently well to be mainstreamed in regular education elementary school classrooms. They may need assistance from a speech therapist over the first year or so in school, and some may require pull-out services in reading or math, but they should generally do well socially and reasonably well academically. About 1/3 of these mainstreamed students continue to exhibit some minor autism signs. They may have problems in some language (e.g. understanding jokes) and social areas (e.g. understanding others' feelings). They will tend to have more activity level problems in school than their peers (e.g. remaining in their seats and talking out of turn). But generally, these children do quite well in school with minimal supports. Prognosis in middle school and high school is much more difficult to predict because there have been only one or two long term follow up studies. There have been reports that some children who have done very well in early elementary grades begin having academic problems by middle school, especially in reading comprehension and more complex math. However, at this point, no one really knows what proportion of those children will continue to perform well in school.
How do parents obtain the skills to make continued improvements in the child's development on their own?
In Intensive Early Behavior Therapy Family Skills Training is essential as a major purpose of IEBT is to enable parents to acquire the skills to promote the development of their children with ASDs on their own. Family Skills training usually takes place once per week, in which the Senior Behavior Therapist or an Advanced Behavior Therapist works with the parents, coaching them in techniques and procedures to continue their child's skill development in the absence of IEBT staff. MEAP involves parents in the development of goals to be addressed during Family Skills Training in order to ensure that the goals targeted are functional and meaningful for the family.
My child's school conducted a Functional Behavioral Assessment because of his behavior problems. What is FBA, and can that help us at home?
Functional (Behavioral) Assessment: (FBA) seeks to identify the problem behavior a child may exhibit, determine the function or purpose of the behavior, and develop interventions to teach acceptable alternatives to the behavior. The process is as follows: 1. Identify the behavior that needs to change, 2. Collect direct observational data on the behavior, 3. Develop a hypothesis about the reason for the behavior based on the behavior's typical antecedents and consequences; (4) Evaluate possible health or other social conditions that may be contributing to the behavior problem and (5) Implement a behavior intervention based on the foregoing analysis. FBAs conducted at home often provide different information than in school since the reasons the child exhibits problem behavior at home may be different. IEBT staff often routinely use FBAs to develop treatments for problem behavior.
Some professionals compare ABA therapy with "dog training" or say it turns kids into robots, while other parents tell us that ABA therapy has greatly helped their children with autism develop and prosper. What are parents to think about these conflicting statements?
Most people who make comments, such as "ABA therapy is like dog training" or turns kids into "robots", do not know what Intensive Early Behavior Therapy actually is, have never seen it being done, nor seen the results. They are usually reacting to second hand or very outdated information.
Much of the earliest basic behavior analysis research done between the early 1930s and late 1950s was done in laboratory settings with animals. Beginning in the early 1960s, principles of applied behavior analysis began being widely used in special education, general education, rehabilitation, mental health treatment, industrial and occupational psychology, human resources management, and a wide variety of other fields. There have been literally thousands of studies and demonstration projects completed in which applied behavior analysis principles have been used improve the lives of people from various clinical and educational populations of a wide range of age groups and conditions, including many involving children with autism spectrum disorders. Referring to IEBT as "dog training" would be like saying kidney or liver transplant surgery are "veterinary medicine" because the early developmental research was done with laboratory animals. At best, such derogatory statements are ill-informed and at worst, unprofessional.
Most objections to IEBT refer to discrete trial methods, especially those used by Dr. Ivar Lovaas in his earliest work in the 1960s and 70s. Those early methods often appeared mechanical, were repetitive and when the children's performance was viewed out of context, it often lacked the spontaneity of typical children's behavior. Over the intervening 40-45 years, IEBT methods have become more complex, varied and highly individualized. While some discrete trial methods are used in nearly all IEBT approaches early in treatment, most now employ incidental teaching as well as more sophisticated social skills, language and communication intervention strategies drawing on speech and communication and developmental psychology concepts. The fact that approximately half of children completing 2-4 years of IEBT are successfully mainstreamed in elementary school on concluding therapy suggests the children's skills and behavior do not simply consist of robotic scripts as stated by some critics.
D. PRACTICAL INFORMATION ABOUT IN-HOME IEBT TREATMENT
Why must my child have a Prior Authorization before beginning therapy?
A Prior Authorization is a legal authorization that is requested by the funder (DHS or insurance company) prior to beginning services to a child. It is the funding agency's way of saying they approve of the services proposed and will pay for them. If services begin without a PA, it is possible DHS or BCBS may not agree to pay for the provided services. PA requests must be accompanied by an Individual Treatment Plan that justifies the number of hours of specific types of services.
Do I need to be home when therapy is occurring?
Yes. We do require a parent/guardian or designated "caregiver" over the age of 18 to be present in the home while we are providing treatment. Although you are always welcome to sit in and participate in treatment sessions with therapists, you will not need to be participating in all sessions. Caregivers may certainly engage in other activities (e.g. caregiving of other children, laundry, reading, etc.) while treatment is occurring. Your supervisor will coordinate with you to develop a plan for family skills training sessions in order to provide individual time for you to learn techniques to allow for maintenance and generalization of skills taught in therapy.
Can my child handle a three hour therapy session?
It is understandable to be concerned about whether your young child will be able to tolerate a two or three-hour session. Each child's treatment is tailored for their individual needs and we may start with lower hours and gradually increase as your child is able to tolerate the intensity. Since all aspects of our treatment are individualized, the session is structured based on the age and developmental needs of each child. We incorporate a mix of play, "work", breaks, and other activities. Often we are able to embed the teaching of skills into play or other favored activities and the child doesn't even know they are "working"!
Do I need to have a separate room for therapy?
MEAP therapists will work in a variety of environments with your child to encourage generalization and maintenance of skills. Initially in treatment it will be important for us to have an area where we can work with your child in a more structured environment that is separate from other children and distractions of the home. A room or area with a small table and toys with adequate room to play and move around typically works best. This is also where we will keep materials and paperwork needed for treatment.
Please feel free to contact the MEAP office at 763-425-0792 if you have any other questions
or are interested in beginning the treatment process.