Autism Spectrum Disorders (ASD) Cara Kimberg, M.S.

What is Autism? Four ways to “define” autism Four ways to “define” autism DSM-IV DSM-IV Parents with a child with autism Parents with a child with autism Individuals with autism Individuals with autism What we know (i.e. stereotypes of autism) What we know (i.e. stereotypes of autism) Let’s take a look at each one to get a more comprehensive idea of this disorder Let’s take a look at each one to get a more comprehensive idea of this disorder

DSM-IV criteria First, important to note that autism is a spectrum disorder characterized by: First, important to note that autism is a spectrum disorder characterized by: Impairments in social interaction Impairments in social interaction Impairments in communication Impairments in communication Presence of restricted, repetitive behaviors (RRBs) Presence of restricted, repetitive behaviors (RRBs) Spectrum = variability within and across these areas Spectrum = variability within and across these areas 1 in 150 children diagnosed with autism includes the entire spectrum 1 in 150 children diagnosed with autism includes the entire spectrum

DSM-IV criteria (continued) Umbrella term is really Pervasive Developmental Disorders (PDD) Umbrella term is really Pervasive Developmental Disorders (PDD) 5 different subtypes of PDD 5 different subtypes of PDD Autistic Disorder Autistic Disorder Asperger’s Disorder Asperger’s Disorder PDD-NOS PDD-NOS Rhett’s Disorder Rhett’s Disorder Childhood Disintegrative Disorder Childhood Disintegrative Disorder Autism Spectrum Disorders

Rhett’s Disorder (299.80) (A) All of the following: (A) All of the following: apparently normal prenatal and perinatal development apparently normal prenatal and perinatal development apparently normal psychomotor development through the first 5 months after birth apparently normal psychomotor development through the first 5 months after birth normal head circumference at birth normal head circumference at birth (B) Onset of all of the following after the period of normal development: (B) Onset of all of the following after the period of normal development: deceleration of head growth between ages 5 and 48 months deceleration of head growth between ages 5 and 48 months loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing) loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing) loss of social engagement early in the course (although often social interaction develops later) loss of social engagement early in the course (although often social interaction develops later) appearance of poorly coordinated gait or trunk movements appearance of poorly coordinated gait or trunk movements severely impaired expressive and receptive language development with severe psychomotor retardation severely impaired expressive and receptive language development with severe psychomotor retardation

Facts about Rhett’s Disorder Complex neurological disorder Complex neurological disorder Genetic in origin Genetic in origin Primarily in girls Primarily in girls Present at birth but more apparent during second year Present at birth but more apparent during second year Second most common cause of severe learning disability in girls Second most common cause of severe learning disability in girls 1:10,000 to 1:23, 000 diagnosed 1:10,000 to 1:23, 000 diagnosed Period of temporary regression including loss of communication skills, and purposeful hand movements Period of temporary regression including loss of communication skills, and purposeful hand movements

Childhood Disintegrative Disorder (299.10) (A) Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior. (A) Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior. (B) Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas: (B) Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas: expressive or receptive language expressive or receptive language social skills or adaptive behavior social skills or adaptive behavior bowel or bladder control bowel or bladder control play play motor skills motor skills (C) Abnormalities of functioning in at least two of the following areas: (C) Abnormalities of functioning in at least two of the following areas: qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity) qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypies and mannerisms restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypies and mannerisms (D) The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia. (D) The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia.

Facts about Childhood Disintegrative Disorder Child regresses from age 2-10 (debated) in terms of language skills, social behavior, and all developmental motor skills Child regresses from age 2-10 (debated) in terms of language skills, social behavior, and all developmental motor skills Can occur abruptly or over a longer period of time Can occur abruptly or over a longer period of time Sometimes child is aware of their loss of skills Sometimes child is aware of their loss of skills No cure No cure

Autistic Disorder (299.0) (A) total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): (A) total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): 1)qualitative impairment in social interaction, as manifested by at least two of the following: (a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction (a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction (b) failure to develop peer relationships appropriate to developmental level (b) failure to develop peer relationships appropriate to developmental level (c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) (c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) (d) lack of social or emotional reciprocity (d) lack of social or emotional reciprocity

Autistic Disorder (2) qualitative impairments in communication as manifested by at least one of the following: (a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime) (a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime) (b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others (b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others (c) stereotyped and repetitive use of language or idiosyncratic language (c) stereotyped and repetitive use of language or idiosyncratic language (d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level (d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Autistic Disorder (3)restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: (a) encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus (a) encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus (b) apparently inflexible adherence to specific, nonfunctional routines or rituals (b) apparently inflexible adherence to specific, nonfunctional routines or rituals (c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) (c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) (d) persistent preoccupation with parts of objects (d) persistent preoccupation with parts of objects

Autistic Disorder (B) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play. (B) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play. (C) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder. (C) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.

Asperger’s Disorder (299.80) (A) Qualitative impairment in social interaction, as manifested by at least two of the following: (A) Qualitative impairment in social interaction, as manifested by at least two of the following: marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction failure to develop peer relationships appropriate to developmental level failure to develop peer relationships appropriate to developmental level a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) lack of social or emotional reciprocity. lack of social or emotional reciprocity. (B) Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: (B) Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus apparently inflexible adherence to specific, non-functional routines or rituals apparently inflexible adherence to specific, non-functional routines or rituals stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) persistent preoccupation with parts of objects persistent preoccupation with parts of objects

Asperger’s Disorder (C) The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning. (C) The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning. (D) There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years) (D) There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years) (E) There is no clinically significant delay in cognitive development or in the development of age-appropriate self- help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood. (E) There is no clinically significant delay in cognitive development or in the development of age-appropriate self- help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood. (F) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia. (F) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Pervasive Developmental Disorder-NOS (299.80) This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism --- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these. This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism --- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

Parents of children with ASD /autism_every_day.php /autism_every_day.php /autism_every_day.php /autism_every_day.php Impact on the family Impact on the family Social Social Financial Financial Everyday routines Everyday routines Variable experiences based on an individual child and his/her strengths and weaknesses Variable experiences based on an individual child and his/her strengths and weaknesses

Anecdotal Stories ( org)

Individuals with Autism How people with autism see the world How people with autism see the world Life of Adults with Autism Life of Adults with Autism Temple Grandin “Autism the way I see it” Temple Grandin “Autism the way I see it” Different types of thinking in autism Different types of thinking in autism 1.Visual thinking - Thinking in Pictures, like mine 2. Music and Math thinking 3. Verbal logic thinking 1.Visual thinking - Thinking in Pictures, like mine 2. Music and Math thinking 3. Verbal logic thinking Play to strengths to be most effective Play to strengths to be most effective e.html e.html e.html e.html

Story from a Teenager with ASD “The characteristics of people with Asperger's are the perfect ones to make obtaining friends difficult. Asperger's Syndrome is part of a spectrum of autistic disorders, all linked by a level of non-communication. At the lowest level, we have cases like my brother Eric, a person trapped in a void where communication is only at the most rudimentary level, about the level of a non- expressive two or three year old. Then among several forms at the highest level, we have Asperger's syndrome. Those with Asperger's often suffer from a plethora of symptoms. The most prominent ones are difficulty with reading people's body language, a singular interest in a subject or several subjects (from my own life, I have one major interest in rock music, compulsively looking for new reviews and obsessing over the best quality of sound to listen to them), a slight monotone voice, struggling with proper body distance, and a tendency to use a vocabulary that is of a slightly higher sophistication than most people would use such as when I employ words like vitriolic, inundate, smorgasbord, plethora, paraphernalia, and others of that variety. While obviously every person with the syndrome may not experience each and every single trait, I have experienced all of these symptoms to some degree. Couple that with a fairly shy personality, a shyness that may or may not have anything to do with Asperger's Syndrome, and I am often left feeling like everyone sees me as being quiet and not worth talking to.” “The characteristics of people with Asperger's are the perfect ones to make obtaining friends difficult. Asperger's Syndrome is part of a spectrum of autistic disorders, all linked by a level of non-communication. At the lowest level, we have cases like my brother Eric, a person trapped in a void where communication is only at the most rudimentary level, about the level of a non- expressive two or three year old. Then among several forms at the highest level, we have Asperger's syndrome. Those with Asperger's often suffer from a plethora of symptoms. The most prominent ones are difficulty with reading people's body language, a singular interest in a subject or several subjects (from my own life, I have one major interest in rock music, compulsively looking for new reviews and obsessing over the best quality of sound to listen to them), a slight monotone voice, struggling with proper body distance, and a tendency to use a vocabulary that is of a slightly higher sophistication than most people would use such as when I employ words like vitriolic, inundate, smorgasbord, plethora, paraphernalia, and others of that variety. While obviously every person with the syndrome may not experience each and every single trait, I have experienced all of these symptoms to some degree. Couple that with a fairly shy personality, a shyness that may or may not have anything to do with Asperger's Syndrome, and I am often left feeling like everyone sees me as being quiet and not worth talking to.” (Autismspeaks.org) (Autismspeaks.org)

Stereotypes about ASD Head banging Head banging Hand flapping Hand flapping Non-communicative Non-communicative Non-verbal Non-verbal “own world” “own world”

How is Autism Diagnosed? Autism Diagnostic Observation Schedule (ADOS; Lord et al) Autism Diagnostic Observation Schedule (ADOS; Lord et al) Autism Diagnostic Interview-Revised (ADI-R; Rutter et al) Autism Diagnostic Interview-Revised (ADI-R; Rutter et al) Social Communication Questionnaire (SCQ; Rutter et al) Social Communication Questionnaire (SCQ; Rutter et al) Childhood Autism Rating Scale (CARS; Schopler et al) Childhood Autism Rating Scale (CARS; Schopler et al) Clinical judgment plays a HUGE role Clinical judgment plays a HUGE role What are the dangers of this? What are the dangers of this? Potential differential diagnoses (type of language/communication disorder, OCD, anxiety disorder) Potential differential diagnoses (type of language/communication disorder, OCD, anxiety disorder)

Benefits of Early Diagnosis Treatment and intervention effectiveness Treatment and intervention effectiveness Skill acquisition Skill acquisition exposure exposure

Types of Treatments/Interventions Interpersonal Relationship Intervnetions and Treatments Interpersonal Relationship Intervnetions and Treatments Skill-Based Interventions and Treatment Skill-Based Interventions and Treatment Cognitive Interventions and Treatment Cognitive Interventions and Treatment Physiological/Biological/Neurological Interventions and Treatment Physiological/Biological/Neurological Interventions and Treatment Other Interventions, Treatments and Related Agents Other Interventions, Treatments and Related Agents

Interpersonal Relationship Social-affective interpretation of ASD Social-affective interpretation of ASD Need for people with ASD to express attachments to others appropriately Need for people with ASD to express attachments to others appropriately Seek to facilitate affect, attachment, bonding, sense of relatedness Seek to facilitate affect, attachment, bonding, sense of relatedness Holding Therapy (not recommended) Holding Therapy (not recommended) Developmental, Individual-Difference Relationship Based Model (Floortime; Developmental, Individual-Difference Relationship Based Model (Floortime;

Skill-Based Most common methods used by schools Most common methods used by schools Intent is to develop and support functional demonstration of specific skills rather than to facilitate bonding Intent is to develop and support functional demonstration of specific skills rather than to facilitate bonding Target specific skills to teach to improve functioning in specific areas Target specific skills to teach to improve functioning in specific areas Picture Exchange Communication System (PECS) Picture Exchange Communication System (PECS) Facilitated Communication (not recommended) Facilitated Communication (not recommended) Assistive Technology Assistive Technology Applied Behavior Analysis (Scientifically Based Practice) Applied Behavior Analysis (Scientifically Based Practice) TEACCH TEACCH

Cognitive Teaching individuals with ASD to monitor their own behavior and performance Teaching individuals with ASD to monitor their own behavior and performance Shift control from others to the individuals Shift control from others to the individuals Connection between thoughts, feelings and behavior Connection between thoughts, feelings and behavior Social Stories Social Stories Social Decision Making Strategies Social Decision Making Strategies LEAP (Scientifically Based Practice) LEAP (Scientifically Based Practice)

Physiological/Biological/Neurological Address the neurological dysfunctions or problems thought to exist at the core of ASD Address the neurological dysfunctions or problems thought to exist at the core of ASD Alter way in which neurological system processes information, the manner in which information is received, chemistry and processes associated with sensations, perceptions and emotions Alter way in which neurological system processes information, the manner in which information is received, chemistry and processes associated with sensations, perceptions and emotions Irlen Lenses (limited support) Irlen Lenses (limited support) Sensory integration (promising practice) Sensory integration (promising practice) Auditory Integration Training (limited support) Auditory Integration Training (limited support) Pharmacology (promising practice) Pharmacology (promising practice)

Others Mercury: Vaccinations and Autism (limited support) Mercury: Vaccinations and Autism (limited support) Gluten-Casein Intolerance (limited support) Gluten-Casein Intolerance (limited support) Music therapy (limited support) Music therapy (limited support)

Controversies with Treatments Limited scientific support Limited scientific support Treatments as a “cure” Treatments as a “cure” Decisions regarding financial resources Decisions regarding financial resources Where does research money go? Where does research money go? Autism is all over the news Autism is all over the news

Community Resources Center for Autism and Related Disabilities Center for Autism and Related Disabilities