AUTISM SPECTRUM DISORDERS IN EMERGING ADULTS Douglas J. Scambler, Ph.D. Clinical Psychologist Presented at the University of Wyoming November 6, 2012 OVERVIEW OF PRESENTATION What are the autism spectrum disorders (ASDs)? Supports for individuals with ASD s in post secondary education IMPAIRMENT ASSOCIATED WITH ASD S Impairment on two continuums Measured cognitive abilities Range from Intellectual Disability (formerly Mental Retardation) to extremely high Vary from one area of problem solving to another Severity of autism symptomatology Severe Autism Mild Autism Asperger s PDD-NOS Considerable variability in impairment Severe autism with intellectual disability Asperger s Disorder with above average IQ 1
PERVASIVE DEVELOPMENTAL DISORDERS OR AUTISM SPECTRUM DISORDERS Three areas of impairment Reciprocal social interactions Pragmatics of communication Restricted repetitive and stereotyped patterns of behavior APA (2000) DEFICITS IN RECIPROCAL SOCIAL INTERACTIONS Marked impairment in use of nonverbal behaviors Failure to develop appropriate peer relationships Lack of spontaneous seeking to share emotions Lack of social or emotional reciprocity DEFICITS IN PRAGMATICS OF COMMUNICATION Limitations in use of spoken language Impairment in ability to initiate or sustain conversations Stereotyped and repetitive use of language or idiosyncratic language Limited spontaneous make-believe play 2
RESTRICTED, REPETITIVE BEHAVIORS, INTERESTS, OR ACTIVITIES Preoccupations with stereotyped and restricted patterns of interest Inflexible adherence to nonfunctional routines or rituals Stereotyped and repetitive motor mannerisms Preoccupation with parts of objects AUTISTIC DISORDER Three areas of impairment Deficits in reciprocal social interactions Deficits in pragmatics of communication Restricted, repetitive behaviors, interests, or activities Delays or abnormal functioning prior to age 3 At least 6 symptoms present At least 2 symptoms from the social domain At least 1 symptom each from the communication and behavior domains APA (2000) ASPERGER'S DISORDER Two areas of impairment At least 2 symptoms from the social domain At least 1 symptom from the restricted, repetitive behaviors, interests, or activities domain No delay in language acquisition No delay in cognitive development or selfhelp/adaptive skills APA (2000) 3
PERVASIVE DEVELOPMENTAL DISORDER- NOT OTHERWISE SPECIFIED At least one symptom from the social domain At least one symptom from either the communication or behavior domains Criteria not met for another PDD APA (2000) EDUCATIONAL DIAGNOSIS OF AUTISM These items are part of the educational diagnosis but not part of the medical diagnosis Abnormal sensory processing The child exhibits unusual, repetitive, nonmeaningful responses to: (list of 6 sensory inputs) Impaired cognitive development Has difficulty with concrete versus abstract thinking, awareness, judgment, and/or the ability to generalize Exhibits perseverative thinking or impaired ability to process symbolic information PROPOSED CHANGES FOR DSM-V Only Autism Spectrum Disorder One disorder The Communication and Social Reciprocity clusters are combined into one area of concern The Repetitive Behaviors and Restricted Areas of Interest cluster is maintained. Severity of symptoms in each cluster are considered separately DSM Working Draft - APA 4
DSM-5 AUTISM SPECTRUM DISORDER Social/Communication Cluster Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: 1. Deficits in social-emotional reciprocity Abnormal social approach Limit conversation skills Reduced sharing of interests, emotions, and affect 2. Deficits in nonverbal communicative behaviors used for social interaction Poorly integrated- verbal and nonverbal communication Abnormalities in eye contact and body-language Deficits in understanding and use of nonverbal communication Lack of facial expression or gestures. 3. Deficits in developing and maintaining relationships Difficulties adjusting behavior to suit different social contexts Difficulties in making friends Apparent absence of interest in people WWW.DSM5.org publication Date May, 2013 PROPOSED REVISIONS TO AUTISM SPECTRUM DISORDERS Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following: 1. Stereotyped or repetitive speech, motor movements, or use of objects 2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change 3. Highly restricted, fixated interests that are abnormal in intensity or focus Strong attachment to or preoccupation with unusual objects Excessively circumscribed or perseverative interests 4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment Apparent indifference to pain/heat/cold Adverse response to specific sounds or textures Excessive smelling or touching of objects Fascination with lights or spinning objects WWW.DSM5.org publication Date May, 2013 PROPOSED REVISIONS TO AUTISM SPECTRUM DISORDERS Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) Symptoms together limit and impair everyday functioning. WWW.DSM5.org publication Date May, 2013 5
SEVERITY Severity Level for ASD Social Communication Restricted interests & repetitive behaviors Level 3 Requiring very substantial support Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others. Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly. Level 2 Requiring substantial support Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others. RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB s are interrupted; difficult to redirect from fixated interest. Level 1 Requiring support Without supports in place, deficits in social communication cause noticeable impairments. Has Rituals and repetitive behaviors (RRB s) cause difficulty initiating social interactions and significant interference with functioning in one or demonstrates clear examples of atypical or more contexts. Resists attempts by others to unsuccessful responses to social overtures of interrupt RRB s or to be redirected from fixated others. May appear to have decreased interest in interest. social interactions. www.dsm5.org SYMPTOMS OF AUTISM SPECTRUM DISORDERS Negative symptoms (What s missing) Limited social referencing Limited verbal/nonverbal communication Lack of expected emotional expression Positive Symptoms (What s there that s unexpected) Unusual motor movements Unusual toy play Perseverative interests Unique use of language YOUNG ADULT MANIFESTATIONS OF ASDS Individuals with ASDs gain skills in all areas They gain communication skills They gain social skills They expand their areas of interest However, they still look different than typically developing adults because they still have deficits in these areas compared to others the same age 6
ASSOCIATED FEATURES Comorbid mental health difficulties (e.g., anxiety, OCD, depression) Attentional difficulties ASD AND POST SECONDARY EDUCATION Consider these issues that could impact success Match between the responsibilities associated with the degree and the persons strengths and needs Possible supports and accommodations See Kurtz & Jordan (2008) PREVALENCE RATES 7
PREVALENCE RATES ARE INCREASING Lotter (1966) epidemiological study 4-5/10,000 (.05%) 2002 review of recent studies 60/10,000 autism spectrum disorders (.6%) 8-30/10,000 for autistic disorder (.3%) Approximately a 10 fold increase Autism and Developmental Disabilities Monitoring Network (2012) indicate 1/88 (1.1%) for ASD See Charman & Baird (2002) and Frith (2003) for reviews ; WHY HAVE PREVALENCE RATES INCREASED? Identification of children with higher and lower intelligence Broadening and refining of criteria Increased awareness of the disorder Diagnosing disorder in children with other difficulties (e.g., Down Syndrome, Tuberous Sclerosis) Increase in identified cases appears to follow the more wide spread use of the DSM-III and DSM- III-R in the 1980s TECHNIQUES FOR SUPPORTING INDIVIDUALS IN THE POST SECONDARY EDUCATION SETTING Social Stories TM Use of Videos Self Monitoring Scripts to help the person with ASD engage in social interactions Peer mentor 8
SOCIAL STORIES CAROL GRAY, 2004 Describes situations using a specific set of rules with the purpose of helping an individual understand the situation better May be most effective if introduced using a situation in which the individual is successful THE BASIC STEPS TO CREATING SOCIAL STORIES Consider specific child s needs and strengths. Observe the social situation of interest Imagine aspects of the situation that may not be observable What people might be thinking and feeling Consider the target child s perception of the situation Does the child appear fearful or confused? What does the child report about the situation? Students perspective determines focus of the social story Describe a situation in terms of relevant social cues Carol Gray 2003 (www.thegraycenter.org) WRITING SOCIAL STORIES CAROL GRAY, 2004 Four types of sentences can be included Descriptive Who? What? Where? Why? Perspective The feelings, thoughts, and reactions of others in a given situation Directive Individualized statements of desired responses Control Sentence written by the child that will help them recall the information in the social story 2 to 5 descriptive, perspective and control statements plus 1 or zero directive statements equals a social story Take time to carefully describe what people do and why 9
AN EXAMPLE SOCIAL STORY WHY SHOULD I DO HOMEWORK? During the week, I usually go to school. While I am at school, my teacher might assign homework for me to do. Sometimes I want to do something else instead. If I do my homework, I will probably learn new things and maybe practice what I have already done. When I am told to do my homework, I will try to do it the best that I can. Carol Gray, 2004 AN EXAMPLE SOCIAL STORY WHEN IS IT A GOOD TIME TO GIVE MY OPINION? When I am at school people tell me a lot of information. Sometimes I know information that is different than the information they tell me about. Sometimes I want to tell them about the information I have that I think is different or better than the information they have. When I am in class and the teacher is telling everyone something, I should try to keep my information to myself. I will probably have a better conversation with my teacher about my information if I talk to them after class. Carol Gray, 2004 VIDEO MODELING 1. Observe and record a typically developing child 2. Model the target activity for the child with an adult model engaging in sequenced activity and corresponding verbalizations 3. Show the videotape to the target child twice before the child has engages in the activity 4. Tell them, It s time to (play, talk to Mike, go to swimming) 5. Observe his or her behavior for desired behavior from the video model MacDonald, Clark, Garrigan & Vangala (2005) 10
DEVELOPING THE VIDEO Observe and videotape a typically developing peer engaging in target behavior Develop a script for the activity and verbalizations (start with 15 to 20 actions with coordinated verbalizations) Videotape an adult following the script MacDonald, Clark, Garrigan & Vangala (2005) SHOW VIDEO MODELS USING VIDEO MODELING WITH OLDER CHILDREN AND YOUNG ADULTS Observe an activity Develop a script for the activity Look for over 80 % of scripted actions and verbalizations (mastery) 11
USING VIDEO MODELING WITH OLDER Activity Ideas CHILDREN AND YOUNG ADULTS Effectively using independent work time Asking for needed information from teachers Eating lunch with peers Riding a bike Walking in the neighborhood Walking the dog Playing a video game with another person SELF MONITORING Autism Internet Modules http://autisminternetmodules.org provides a two hour training on this technique Four step program Prepare the specific system to be implemented Teach the learner to use the system Implement the system with adult support Promote learner independence with the system Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders SELF MONITORING PREPARE THE SYSTEM TO BE IMPLEMENTED Conduct a functional behavioral assessment (FBA) to identify the target behavior to be increased or decreased The behavior can be an inappropriate behavior (e.g. arguing with adults at inappropriate times) Or an appropriate behavior (e.g. initiating appropriate conversations with peers) Develop an agreed upon definition of the behavior Present the target behavior to the learner in a way that can be understood by the learner Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders 12
SELF MONITORING PREPARE THE SYSTEM TO BE IMPLEMENTED Develop a data collection system Interval? (e.g. stayed in the resource room during the entire study hall) Frequency? (e.g. initiated two appropriate conversations with peers during lunch hour) Decide on the initial criterion for the target behavior (set the bar at a level at which the learner can meet the goal at least 80% of the time) Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders SELF MONITORING PREPARE THE SYSTEM TO BE IMPLEMENTED Select a self-monitoring recording and cueing device For frequency tracking Move paper clips from one pocket to the other Tally marks on a piece of paper Frequency counts on an electronic device For interval tracking Check the yes/no box on a piece of paper Indicate yes/no at the end of an interval in an electronic device Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders SELF MONITORING TEACH THE LEARNER TO USE THE SYSTEM The learner should be able to demonstrate the target behavior The learner should be able to report on when the exhibit the target behavior The learner should be able to accurately record when they have exhibited the target behavior The learner needs to be able to manage the reinforcers Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders 13
SELF MONITORING IMPLEMENT THE SYSTEM WITH SUPPORT Teachers/practitioners Provide learners with materials to use the selfmanagement system Teach the learner to gather the materials Prompt them to self-record accurately Reinforce accurate self-recordings Fade prompts with learner accurately self-recording 80% of the time Prompt learner to access reinforcers when criterion is met Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders SELF MONITORING PROMOTE INDEPENDENCE WITH THE SYSTEM Teachers provide ongoing, intermittent checks for accuracy and follow through Gradually increase the criterion once the learner is successful at a given criterion Autism Internet Modules Content developed by The National Professional Development Center on Autism Spectrum Disorders ASD AND POST SECONDARY EDUCATION ORGANIZATION Different types of organizational support Visual schedules and calendars Software available for smartphones that promote organization and time management Review schedule with the person with ASD regularly Discuss changes in routine or personnel in advance Provide extra support during transition such as changes at semesters 14
ASD AND POST SECONDARY EDUCATION COMMUNICATION Typical nonverbal communication May not work to effectively support a message May not seem consistent with the verbal message of the individual with ASD Supports for receptive language Speak in direct and clear manner do not use figurative speech Provide plenty of time for the individual to respond Use multiple means of communication spoken, written, modeled See Kurtz & Jordan (2008) THANK YOU SELECTED CITATIONS Autism Internet Modules http://autisminternetmodules.org 10 guidelines for Social Stories (Carol Gray, 2004 www.thegraycenter.org Schreibman, Whalen, & Stahmer, (2000). The use of Video Priming to Reduce Disruptive Transition Behavior in Children with Autism. Journal of Positive Behavior Interventions. 2, 3-11. MacDonald, R., Clark, M., Garringan, E. & Vangala, M. (2005). Using Video Modeling to Teach Pretend Play to Children with Autism. Behavioral Interventions, 20, 225-238. Kurtz & Jordan (2008) Supporting Individuals with Autism Spectrum Disorder: Quality Employment Practices. www.comunityinclusion.org/article.php?article_id=266&styl e=print 15