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Autism Evaluations:

Individualizing the Diagnosis for Parents and Teachers

IASP Workshop Session Amsterdam

July 22, 2016

Marilyn J. Monteiro, Ph.D. www.marilynmonteiro.com

© 2016 Marilyn J. Monteiro, Ph.D. All rights reserved. These handouts are for the express use of the ISPA Conference participants on July 22, 2016. Copying and distribution of these handouts is not authorized. The material is copyrighted and posting on your website is an unauthorized reproduction infringement.

FAMILY THERAPY AND THE AUTISM SPECTRUM

Autism Conversations in Narrative Practice

MARILYN J. MONTEIRO

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Autism Evaluations:

Individualizing the Diagnosis for Parents and Teachers Marilyn J. Monteiro, Ph.D.

Diagnostic Challenges for School Psychologists

Telling the story of the individual child not the story of Autism Spectrum Disorder

School psychologists must be familiar with the full range of Autism Spectrum Disorder differences in development and use a range of diagnostic rating scales, tests, and interview techniques to gather diagnostic information This requires developing diagnostic language that emphasizes recognizing deficits, as the global criteria is defined by deficits This negative language creates a barrier between the school psychologist and parents and teachers Creating the story of the individual child requires the use of narrative techniques and language

The Parent Narrative

Understand the power of storytelling when structuring the parent interview

Record and report stories that highlight the individual presentation of Autism Spectrum Disorder Establish a relationship of trust by listening and believing what you hear rather than explaining away autism spectrum differences

Recognize that rating scales only tell part of the story

The Teacher Narrative

Structure the teacher interview to maximize story telling; the pattern of autism spectrum differences clearly emerges when teachers are asked to describe the student in daily situations The teacher narrative provides the entry point to support the shift from the language of deficits to the language of differences, including areas of strength associated with autism spectrum brain style differences

© 2016 Marilyn J. Monteiro, Ph.D.

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The Visual Framework for Autism-Spectrum Disorders:

The Descriptive Triangle

This framework helps you:

Understand the Autism Worldview Take the Perspective of the Child

Describe Behavior Patterns Instead of Using Labels Start with Strengths and Then Describe Differences

Link the Student’s Autism Behavior Profile to Practical Interventions and Educational Supports

Language and Communication

Sensory Use Social Relationships and and Interests Emotional Responses

Marilyn J. Monteiro, Ph.D. www.marilynmonteiro.com

www.wpspublish.com © 2001; 2010; 2016 Marilyn J. Monteiro, Ph.D. All rights reserved. Adapted from her books “Autism Conversations: Evaluating Children on the Autism Spectrum through Authentic Conversations” (2010: Western Psychological Services, publisher) and “Family Therapy and the Autism Spectrum; Autism Conversations in Narrative Practice” (2016; Routledge Publications).

Differences in

Brain Style

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DSM 5 Autism Spectrum Disorder Levels of Support: Using the Autism Conversations Descriptive Triangle to Individualize the Diagnosis

© 2013, 2015 Marilyn J. Monteiro, Ph.D. All rights reserved

Level 1: Requiring Support

Level 2: Requiring Substantial Support

Level 3: Requiring Very Substantial

Support

DSM 5 Criteria A Social Communication and Language: (Social Communication)

Language skills well developed Usually has developed one or more areas of passionate interest Conversation with others focuses on conveying facts and details about preferred topics “Sensory-driven” speech (the person appears to repeat details for his or her benefit rather than sharing information for social interaction) Ability to organize and use language diminishes when responding to others in social situations, and when discussing emotions Some demonstrated use of nonverbal communication functions but inconsistent in the ability to interpret and use common cues

Language skills typically less developed than in children at Level 1

Use of language is prompt-dependent on adults May have developed one or more areas of passionate interest but has difficulty communicating details with others May initiate conversation but notable difficulties with reciprocal conversation Inflexible and limited in ability to participate in an extended conversation Use of repetitive questions and phrases is commonly seen Use of nonverbal communication cues inconsistent and infrequent

May be functionally nonverbal Rarely uses nonverbal communication functions (eye gaze, gestures, joint attention) When verbal skills are present: Vocabulary is organized around labeling Use of language is rote and self-directed with frequent use of scripted language Comments rarely directed towards a listener Expressive language more developed than receptive language in everyday situations Receptive language most organized when verbal requests are paired with visual contextual cues

DSM 5 Criteria A Social Interaction and emotional pattern of differences: (Social Communication)

Usually initiates and extends social exchanges but does so on his or her own agenda Most comfortable with adults or younger children even though a desire for peer relationships is generally present Peer relationships are often a source of anxiety and are experienced as perplexing May have difficulty regulating emotional states as evidenced by inflexibility, explosive outbursts, behavior escalation

Prompt-dependent on adults to structure social exchanges and may be able to

initiate and extend as long as structure is present

Lacks flexibility in play routines May become anxious and agitated during loosely structured language and social interactions Access to language significantly decreases as emotional distress increases

Becomes anxious with social exchanges and does not generally initiate or sustain social interactions; Tends to remove self from social exchanges Most comfortable with others when sharing sensory interests and limited language is used Easily distressed by unexpected changes in routine Responds best when distressed when language use is limited and visual prompts are provided

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DSM 5 Criteria B Sensory Use and Interests: (Restricted Interests and Repetitive Behaviors)

Has developed one or more areas of passionate interests that may be age-appropriate in content but unusual in the individual’s focus and intense interest “Sensory-driven” quality to their narrative when sharing information with others about preferred topics Sensory triggers (noises, textures, changes in routine, perceived “unfairness”) leads to decrease in access to language and the individual reverts to the use of inflexible, immature, or unusual behaviors Unusual body movements are subtle but repetitive

Displays some drive to establish sensory-driven play but can be redirected by adults During social play, tends to create rigid and inflexible play routines Infrequent display of unusual body movements and mannerisms may be noted during times of stress or during solitary play times

Tends to focus intently on the sensory aspects of toys and materials; Seeks out manipulative materials with visual and tactile features; Creates repetitive sensory routines as a means to self-regulate anxiety; Frequently displays distinctive unusual body movements and mannerisms

Level 1:

Requiring Support

Level 2: Requiring Substantial Support

Level 3: Requiring Very Substantial

Support

DSM 5 Autism Spectrum Disorder Levels of Support:

Using the Autism Conversations Descriptive Triangle to Individualize the Diagnosis © 2013, 2015 Marilyn J. Monteiro, Ph.D. All rights reserved

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The Autism Spectrum: Understanding and Supporting Students Across Age and Ability Levels

Marilyn J. Monteiro, Ph.D.

Students with Autism Spectrum Differences: Are often three-dimensional, systematic, binary, and visual thinkers This brain style drives the creation of routines Contributes to the student’s inflexibility and rigid thinking Benefit from extra time to process incoming language and are “careful thinkers”

Processing information is hard work Oftentimes the student misses some of the content and context Are sensory-driven instead of organized around social-communication Have a relatively high threshold or drive for sensory input (preferred interests; routines)

Sensory routines feel good and serve the function of helping the individual’s brain organize, regulate, and block out incoming sources of stress

Have a relatively low threshold for verbal and social input Verbal and social exchanges are hard work

Even students who have a social drive struggle with managing the incoming input from their conversational and social partners

May have difficulty following the flow of the classroom Intense focus on areas of interest interfere with the student’s ability to shift from his or her sensory-driven agenda to the agenda of others Are often prompt-dependent on adults and predictable routines Manage directions much better when adults “Talk less and show more”

Even highly verbal students fatigue quickly when following verbal directions Passing the student’s threshold for incoming language and social demands can trigger agitation, anxiety, resistance, and escape behavior routines

© 2014, 2015 Marilyn J. Monteiro, Ph.D.

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The Autism Spectrum: Understanding and Supporting Students Across Age and Ability Levels

Marilyn J. Monteiro, Ph.D.

Four Key Shifts Facing Students, Their Teachers, and Their Parents Powerless to Capable Feeling powerless makes it difficult to see beyond deficits A “cancelling out” of brain styles often leads to a sense of powerlessness

Communication challenges make it difficult for the student, teacher, and parents to feel capable

Dysregulated to Controlled Low threshold for incoming demands (language, social, transitions, work)

Reactivity can become triggered at unexpected times and depends on when the student’s threshold for incoming input has been breached Behavior is communicating: “Too much!” Inflexible brain style leads to the creation of reactivity routines

Prompt-Dependence to Autonomy Adults are working harder than the student

One or more executive functioning brain skills require close and intensive adult supervision and prompting Executive functioning skills: initiation of goal-directed behavior, inhibition, working memory, flexible thinking, planning, organization, and regulation

Disorder to Style “My brain doesn’t work right” Self-narrative centers on deficits

Can result in an experience of “otherness” and marginalization

© 2015 Marilyn J. Monteiro, Ph.D. Adapted from “Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice” Routledge Publishing, February 2016.

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The Autism Spectrum:

Understanding and Supporting Students Across Age and Ability Levels Marilyn J. Monteiro, Ph.D.

Strategies Linked to Each Key Shift Across Age and Ability Level Powerless to Capable

Become a cultural anthropologist and help the student map out his or her brain style Start with areas of strength and then describe differences Use visual supports for communication deficits Adjust communication style to be in sync with the autism brain (visual, predictable, close to the student’s body)

Dysregulated to Controlled

Learn to recognize reactivity routines “Talk less and show more” “Show while telling” Develop personalized regulation scales Describe the words and actions associated with a state of calm control versus agitation and dysregulation

Prompt-Dependence to Autonomy Develop visual organizational tools and routines Break tasks into small steps

Use step-by-step lists that are dynamic and interactive “Train your brain” “Pause” button “Five things my teacher needs to know about me”

Disorder to Style

Help the student develop his or her brain style self-determination narrative “Train my brain” Visual supports and guided practice to develop social skills and genuine social relationships

© 2015 Marilyn J. Monteiro, Ph.D. All rights reserved. Adapted from “Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice” Routledge, February 2016.

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The Parent Interview: Ten Key Trust-Building Factors

Marilyn J. Monteiro, Ph.D. 1. Take your time and meet face-to-face Think of the interview as a semi-structured conversation Have the seating arrangement convey this 2. Understand the importance of story telling Parents need to tell their stories We need to listen and accept what they tell us 3. Start with questions about the present The present provides the natural entry point for this important conversation 4. Listen for themes and concerns

This gives you cues about the language you need to use when discussing the diagnosis in your next conversation

5. Include questions about positive attributes Ask them to pick three words to describe their child Learn about what they like the most about their child 6. Ask what the parents hope to gain from your evaluation Convey that they are collaborative partners in this process Listen to any concerns they raise about the school program 7. Find out what the parents have read or learned so far about autism spectrum disorders This invites them to share their opinions, apprehensions, confusion Helps establish trust with the evaluation team 8. Offer to explain the evaluation process involving their child Emphasize the goal of getting to know their child’s worldview or way of thinking

Link that understanding with helping find practical ways to help their child develop the skills he or she needs

9. Understand the role of the nonfinite grief dynamic

The parent interview provides a place to process this complex set of emotions through sharing stories Structuring the interview around story telling and positive attributes addresses the grief dynamic in an indirect but powerful way

10. Give parents behavior checklists after the interview

Understand why it works best to give parents behavior checklists to complete after, rather than before, the parent interview

© 2014 Marilyn J. Monteiro, Ph.D.

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Discussing the Diagnosis with Parents: 10 Key Elements in the Diagnostic Conversation

Marilyn J. Monteiro, Ph.D.

1. Consider delivering the diagnosis in an informal collaborative meeting Think of this as the follow-up to your initial conversation Parents needs to hear this important information about their child without focusing on anything else 2. Start by sharing details or stories about their child Set the tone for the conversation as being about their child as a unique individual Remember: you are helping the parents build their story about their child 3. Express genuine appreciation and enjoyment of the child

Warmth and a positive tone signal your competence in delivering this difficult diagnosis 4. Use the descriptive triangle of differences to lay out behaviors and gain consensus on the diagnosis The visual framework provides a focus point for parents and evaluators Parents have something tangible to take with them at the end of the conversation Know the knowledge level of the parents and gear your comments to that level 5. Avoid starting out by stating the child meets the criteria for a diagnosis Remember to describe the child first and then link that description to a diagnosis

When the diagnosis comes first the opportunity to establish a bond and to discuss the child in detail may be lost

6. Stop and listen Ask periodically if what you are saying describes their child Leave time in between your points to invite parents to share their thoughts and observations 7. Allow time for grieving

Anticipate that there will be a build up of emotions throughout the conversation culminating in overt grief once the actual diagnosis is stated

Choose your words carefully but do say something to acknowledge the process 8. Anticipate questions about the child’s future development Being able to ask the questions is part of the grief process Asking questions is a sign of trust 9. Express appreciation for the opportunity to get to know their child

Parents appreciate knowing that you respect the unique nature of your relationship to them and their child

10. End with collaborative teaming Leave the session with the parents with a consensus regarding the diagnosis Link the child’s behavioral profile to a few practical and specific recommendations;

tell them the next steps in the process

© 2014 Marilyn J. Monteiro, Ph.D.

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Monica’s Descriptive Triangle Language and Communication

Strengths: Beginning to use words Developing an ever-increasing vocabulary for labeling what she sees Learns new words best within the structure of predictable routines (“showing” while “telling”) Responds best to spoken language when words are paired with predictable visual contextual cues (car keys and verbal prompts to go out; pajamas and bedtime) Directs the adult’s hand to the specific object she wants Calms and is responsive when her mother anticipates her needs

Differences: Prefers to get things without help from others Uses her mother’s hand as a tool to get what she needs if no other option exists Pulls away from verbal language Becomes reactive and disorganized with verbal language demands Predictable routines help her anticipate and attach meaning to language Pairing limited language with visual contextual cues helps her organize, retrieve, and use language Strategies and supports to foster language and communication: Talk less and show more Create predictable communication routines with a visual schedule Use pictures of actual objects or photos Substitute the visual schedule card for pulling on adult’s arm Use visual matching schedule for each transition time and pair with verbal prompts Create photo books about her world

© 2015 Marilyn J. Monteiro, Ph.D. All rights reserved. Adapted from “Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice” Routledge, February 2016.

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Max’s Descriptive Triangle

Social Relationships and Emotions Strengths: Has a close and warm relationship with his parents Has a desire for friendships with peers Cares deeply about others and is happiest when things are going well for himself and others around him Has a strong sense of justice and likes to know and follow rules Differences: Often misses social cues Has difficulty recognizing and following the back-and-forth process involved in social exchanges with others (especially with same-age peers) Loses his ability to use his language when emotionally agitated Once he becomes upset he becomes inflexible in his thinking and behavior Once he becomes upset it can be challenging for him to calm down and regroup Strategies and supports to foster social relationships: Will benefit from direct teaching of social routines, especially when visual teaching strategies are used (for example, comic strip sequences showing the “words and actions” to be used in social situations) Strategies and supports to foster emotional development: Direct teaching of vocabulary for emotions Teach emotional regulation skills with self-monitoring scales Set up calming routines and plans to use when he becomes agitated or distressed © 2015 Marilyn J. Monteiro, Ph.D. All rights reserved. Adapted from “Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice” Routledge, February 2016.

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Mitchell’s Descriptive Triangle

Sensory Use and Interests Strengths: Highly developed ability to focus on his areas of interest; enjoys researching and learning extensive information about his areas of preferred interest Has developed age-appropriate interests (Minecraft, science facts related to astronomy and weather) Visual learner (seeks out visual patterns and routines) Three-dimensional thinker Differences Difficulty shifting his focus from his areas of interest to the agenda of others Highly attentive to visual details Transitions from his areas of interest are frequently a source of agitation and distress Challenging to organize materials, initiate and complete tasks Difficulty managing multiple sources of stimulation (language use significantly decreases and agitation level increases) Seeks out deep pressure, physical movement and visual details to self-regulate Sensory triggers include unexpected sounds, and changes in established routines Engages in unusual body movements and mannerisms, including pacing, body tensing, facial grimacing, close visual inspection of high-interest materials, and picking at skin Strategies and supports to help with sensory regulation: Develop self-monitoring and self-regulation routines; use a visual plan Include systematic sensory routines and breaks to regroup © 2015 Marilyn J. Monteiro, Ph.D. All rights reserved. Adapted from “Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice” Routledge, February 2016.

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Meredith’s Profile

Differences in Brain Style

Language and Communication Strengths Enjoys talking about her interests with others Is learning how to tell facts so that others understand her stories

Enjoys talking with friends Learning how to follow communication rules

Differences Hard to follow topics started by others Hard to understand the meaning of what others are talking about Confused about the topics introduced by others and responds by switching back to her topic; her topics often focus on reporting events from the past Difficult for Meredith to pause her thoughts and narrative to process what others are saying Puts familiar scripted phrases into her conversation and repeats these often (“Some people are worth melting for”) Has not yet developed a way to notice and communicate when she is confused about conversational topics raised by others (does not notice or tell others when she does not understand the question or when she is becoming confused) Use of scripted language increases when agitated or upset Organizes her understanding of incoming language best when visual prompts are provided (lists, social scripts, phrases to say)

Strategies Use visual supports to “show” while telling:

• Lists (words and actions; conversation cues; asking for clarification) • Comic strip social autopsies to teach perspective taking and recognizing

when she is not able to follow the conversation; recognizing when a new topic is introduced; asking for clarification; pausing her conversational flow and practicing listening to incoming language from others)

• Video modeling and review © 2015 Marilyn J. Monteiro, Ph.D. All rights reserved. Adapted from “Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice” Routledge, February 2016.