A. ABOUT DIAGNOSIS
 
What is autistic disorder and how does it differ from autism spectrum disorders?

Autism Spectrum Disorders (ASDs) refers to neurodevelopmental 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. 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 for males to females. 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 impairment in social interactions, restricted and stereotyped interests, 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 6 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.

What is the ICD-10 and how does it differ from DSM-IV?

The ICD-10 is the 10th edition of a classification system of diseases, health conditions and procedures developed by the World Health Organization (WHO), that is the international standard for the labeling and numeric coding of diseases and health related problems. Within this system, all diseases / conditions are assigned numbers in hierarchical order. There are small differences in the terms and criteria in DSM-IV and ICD-10 but in most instances they are of no practical significance. Services to children with ASD must be assigned ICD-10 codes for reimbursement by third party payers. DSM-IV refers to The Diagnostic and Statistical Manual of the American Psychiatric Association, 4th edition. It includes the Diagnostic Criteria for the most common mental disorders including: description, diagnosis, treatment, and research findings. It is the main diagnostic reference of Mental Health professionals in the United States of America (as distinguished from the ICD, which is an international system). A DSM diagnosis is required in order to be reimbursed for mental health services. The two systems are very similar and generally provide comparable information regarding diagnoses.

How is a Developmental Delay different from a Developmental Disability?

Developmental Delay is chronological delay in the appearance of normal developmental milestones achieved during infancy and early childhood, caused by organic, psychological, or environmental factors. A developmental delay need not lead to a life long developmental disability, though that may occur in some instances. A Developmental Disability is usually present at birth, or emerges in early life, which affects cognitive, social, language, psychomotor and//or other functioning necessary to get along in life. DDs are generally considered life-time disabilities that require specialized support services.

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. Do we need to be concerned about that?

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. Stereotypies 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 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.

“My daughter with autism is 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 gradually expose the child to 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 use the same procedures.

Our son with Asperger’s Disorder gets “stuck” doing things over and over until it drives everyone in the family to distraction. For awhile it was turning light switches on and off, then it was opening and closing doors. What can we do to stop this?

Compulsiveness is a core feature 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, the more anxious the child is in general, the more they are likely to engage in compulsive rituals. If you 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. Third, negotiate with the child. Tell them you’re going to do it your way this time and his way next time.

C. ABOUT INTENSIVE EARLY INTERVENTION

Why must my child have a Prior Authorization before beginning therapy?

A Prior Authorization is a legal authorization that is requested from DHS or BCBS by the provider (MEAP in this case) 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.

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’s Discrete Trial method. All employ the same common principles outlined in an article: Baer, D, M., Wolf, M. M., Risley, T. R. (1968). 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 BA degree or equivalent experience working with children with autism and/or related disabilities; they must have a minimum of 2000 hours of experience to be Mental Health Practitioner. BT’s typically have had coursework in applied behavior analysis 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 Program Supervisor.
 
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. First, 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 20-25 hours of week is necessary on average to make major gains. However, there have been some studies with higher functioning children that indicate 15-20 hours per week may be sufficient for some children. We usually recommend 20-35 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.

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, and (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 1-2 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.

How do parents learn the skills to make continued improvements in the child’s development on their own?
 
In Intensive Early Behavior Therapy Family Skills Training is required under Minnesota DHS and BCBS policies 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 4-12 hours per week, in which the Program Supervisor or Senior 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.

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 people say it’s better to use “natural consequences” in teaching children with autism. What is the difference?

Natural (Intrinsic) Consequences: Consequences of a child’s behavior that are logically related to their actions. When a child puts on her clothing in the morning her mother says she can go outdoors and play. Playing outdoors is a natural consequence of getting dressed. Contrived consequences have no logical relation to the behavior displayed. When a child puts on her clothes in the morning her Mom gives her an M&M that has no logical relation to dressing. Natural consequences usually are more effective in maintaining a child’s behavior in the long term. When a young child with an ASD is first learning a new skill and exhibits poor attention and limited ability to participate in therapy, it is often useful to begin by using contrived consequences that are almost universally effective (e.g. like a preferred food item) to jump-start learning. Once that has occurred, therapists often shift to natural consequences as the child’s skill levels increase.

What is the difference between negative reinforcement and punishment?

They sound the same to me. Parents often say they use mild punishment to teach their children right from wrong. They scold or sometimes even spank their children in the belief that will teach them that what they did was wrong. Most scolding or spanking backfires, and often has unwanted side effects. Sometimes it has the opposite effect. Technically, punishment is an aversive procedure designed to produce a relatively immediate reduction in problem behavior. Negative Punishment refers to removal of a desired positive reinforcer immediately following an undesirable behavior, in an effort to reduce the recurrence of the undesired response, e.g. turning off a video game immediately after the ASD child hits a sibling. A Negative reinforcer increases, not decreases behavior. It is something unpleasant or aversive, the removal of which following a child’s response, which makes it more likely the same behavior will occur again under the same circumstances. If a child dislikes speech therapy and bites her hand on entering the therapist’s room, the therapist is unlikely to force her to participate in speech therapy. The child leaves the room thereby avoiding speech therapy. The child’s hand-biting was negatively reinforced by avoidance of speech therapy, making hand-biting more likely in the future. Parents are negatively reinforced when their child stops screaming and crying, because they permitted the child to have another dish of ice cream after they had told them they couldn’t have any more ice cream. They give the child what he or she wants, and in return the child stops screaming. Turning off the tantrum is a negative reinforcer for the parents’ giving in and giving her additional ice cream. Negative Reinforcement is NOT the same as punishment, which is often confused by many parents, teachers and practitioners.

My child’s PCA says we should “give her a time out” when she cries and refuses to do what we ask her to do. Is this a good idea?

Most people confuse the technical meaning of “time out” with the common sense idea of sending a child to her room when she misbehaves as a form of what they believe is “punishment”. Time Out literally means time out from the opportunity to be positively rewarded or reinforced. If a child is asked to do a task they dislike and resist by crying, sending them to their room would very likely reward the crying, not punish it because it would be an escape from an activity they dislike. If the child were engaged in an activity they greatly enjoyed, and were being praised and rewarded for doing so, and then suddenly the child with ASD hits the therapist sitting next to them, removing the child from that activity and requiring they sit quietly behind a screen for a few minutes would actually be a “time out”… time out from a highly rewarding activity. It would likely reduce hitting the therapist in the future, although it is likely their initial response would be to cry and fuss even more about being removed from a preferred activity.

Some of our friends have a child with autism who is in a “verbal behavior” treatment program. How does that differ from other behavior therapy programs?

Verbal Behavior was the title of a book by B.F. Skinner’s published in 1957. It was Skinner’s analysis of speech, conversation and writing in terms of the speaker’s motivational state, stimulus circumstances, past history, and genetic constitutions. Within the filed of autism services, James Partington and Mark Sundberg have done extensive research and applied work, and written about Skinner’s approach to speech and language as it applies to teaching children with autism (see http://www.behavioranalysts.com/). Vincent Carbonne (see http://www.drcarbone.net/) has developed an incidental teaching approach to behavior therapy with children with autism which he calls “Verbal Behavior”, which is based on behavior analytic principles and addresses some concepts in Skinner’s book. Carbone has published several articles on his approach. Both Verbal Behavior approaches appear to be effective for many children with ASDs.

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. They nearly always have some subtle residual differences. A more meaningful goal is to enable a child with ASDs 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 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.

D. ABOUT TREATMENTS IN GENERAL

What does “evidence-based” treatments mean? Does it really make a difference?

Evidence-based treatment is the conscientious and judicious use of current best scientific evidence in making decisions about the care of individuals. That means integrating individual clinical expertise with the best available clinical evidence from systematic research. By best available clinical evidence is meant clinically relevant research into the accuracy and precision of diagnostic tests (including the clinical examination), treatment predictors, and the effectivenss and safety of therapeutic and preventive regimens. (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)

Should children be pulled out of ECSE or other preschool to participate in IEBT?

No. It is important that preschool children with ASD have opportunities for interactions with same age typical peers. School personnel often focus on skills that are difficult or impossible to teach at home. At the same time, parents may 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 ECSE or other preschool programs.