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They Have Some Features, But Are These Children & Adolescents on the Autism Spectrum? What Do We Do?

Terese Pawletko, Ph.D.
AER International Conference July 17-21, 2002 Toronto, Ontario

View web-based presentation (frames-not accessible)

Objectives

• To have you begin to recognize features of autistic spectrum disorder in children and adolescents that may be more subtle indications (Asperger's, HFA)
• To examine patterns in behavior and testing results that might suggest an examination of this diagnostic group in the visually impaired population
• To begin to develop appropriate modifications to curriculum and activities

Peter – A Case Study

Reason for referral:

• Prompted by observations during clinic visit and results of interview with developmental behavioral pediatrician
• Sought IEP team referral for full evaluation – note: at the residential school we had only one student diagnosed with High Functioning Autism at that time and she came with that diagnosis

From Cumulative Record:

• Rocky neonatal course – 23 weeker
• Hearing impairment left ear
• Visual impairment (detached retina left eye; right eye 20/70)
• Growth failure
• Cerebral palsy
• MRI –
  •  Cerebellar hypoplasia – that part of brain responsible for planning, problem solving, decision making, integrating information, etc.
  •  Abnormalities in size of corpus callosum
  •  Neurologist cautioned: “specific subtests would tend to overestimate M’s ability given he lacked the information integrative systems”
•  Neuro-psychological Evaluation (1994):
  • Verbal IQ 73
• Auditory channel variable
• Hypersensitive to sound
• Expressive language dysfunction when not in control of topic, asked to elaborate
• Inefficiency that reflects difficulty organizing/formulating language with enough specificity to demonstrate depth of understanding
• Performance IQ 46
• Impaired attention across processing channels
• Impaired acquisition of all academic skills
• Math problem solving, single word reading, spelling, reading comprehension, etc. all standard scores in 50’s
• Final Diagnoses (1994 evaluation):
  • Organic brain syndrome
  • ADD/NOS
  • Perceptual Processing Disorder
  • Communication Disorder
  • Global Learning Disability
  • Perceptual Motor Incoordination including graphomotor skills, written communication, motor planning
• History from Family:
  •  “Surprised that he lived”
  •  As young child - sensory overload with sound, puzzles, etc.; slow to walk
  •  Picky eater
  •  Problems with organization, sequencing, decision making (e.g., limit menu options), time management; applying rules (e.g., computer)
  •  Chronic worrier, strong reaction to change
  • Always something that did not quite fit after getting results – they did not explain why Peter…
    • So verbal, social, but not apply social rules; why not learn from mistakes
    • Used same strategies across all interactions (e.g., holds hands with adults, hugs everyone); treat all same (e.g., acquaintance, best friend)
    • Over-reacted frequently, despite good support
    • Public School was problem – peers (teased or taken advantage of; not know how to interact), organizational issues, some success with creative teachers (e.g., use social interest to have him do “roving reporter” )
    • Leisure pursuits: Star Trek, computer games, Simple Scrabble, history; books on tape
• Family History/Background
•  Facial tics
•  Mood disorders in grandparents; uncle who kept to self [now likely diagnosed with Asperger’s himself]
•  Highly educated parents – scientist, educators
• Interview with Teacher
  •  Loses Large Print books, books on tape
  •  Not using equipment consistently, needs prompts
  •  Time, money concept problems – amount; getting places in timely fashion (e.g., distracted in hall)
  •  Social – wants friends, hard time making them and keeping them – can be critical; drawn to adults but not appropriate there
  •  Emotional – upset with change in routine – loud, rocks, obsesses/gets stuck verbally and physically
• Interview with Dorm
  •  “Needs to try harder”
  •  Literal, problems understanding
  •  Time, money concept problems
  •  “Peter feels guilty when not follow/do things acc. to rules – knows it will disappoint parents, staff even if staff try to reassure
  •  Resistant to staff feedback, correction
• Results of my Evaluation
  •  Deceivingly complex, tremendous scatter
  •  Asperger’s Syndrome
  •  Many of his observable problems resulted from mismatch between his skills (perceived and real) and environment (physical, expectations of others)

What is Asperger’s Syndrome?
(Wing, 1981; Attwood, 1998; Klin & Volkmar, 1997; Kunce & Mesibov, 1998)

Note: The list of descriptive features that follow should be used as “often occurring but not always in the form described, not exactly the same in all children and adults” – Aspergers Syndrome, like all autism spectrum disorders is just that “a spectrum disorder” with variation.

Qualitative impairment in social functioning

• Want to relate to others, not have skills, approach others in unusual/awkward ways
• Lack to ltd. understanding of social customs and “unwritten rules,” those learned are applied rigidly
• Make statements factually true, but socially inappropriate (e.g., Scottie) – unaware of impact of statement on others
• Difficulty understanding need to adjust topic, vocabulary, grammar, etc. based on needs of listener
• May be perseverative, bothersome, nonselective re: place/time/person with whom discuss topic
• Difficulty with perspective taking, empathy, misinterpret social cues
• Difficulties negotiating, compromising, being able to accept others’ ideas, take feedback
• Poor incidental learners

Language/communication Patterns

• May have delays in acquisition, but once speak, do so in full sentences
• May have advanced vocabulary, but problems with pragmatics (language in social context)
• May use phrases “in toto”/as heard spoken by others with varying degrees of comprehension
• Narrow interest, talk on one topic
• Difficulties with rules of conversation; timing (e.g., may interrupt), quantity/quality of language (e.g., irrelevant comments, circuitous discussion, verbose)

Language/communication – receptive

• Respond to suggestions literally
• Difficulties recognizing words may have multiple meanings
• Difficulties with metaphors, humor, irony
• Difficulty grasping main idea

Impairments in nonverbal aspects of language

• Intonation – constricted range (e.g., monotonous, strange inflection) or without regard to communicative function
• Rate of speech may be unusual (e.g., too fast) or lack fluency (e.g., halting, jerky, stilted)
• Poor breath and volume control (too loud, too soft)
• Inappropriate body language or facial expression (e.g., not use, or use exaggerated)
• Inappropriate social distance
• Tendency to rock, fidget or pace while concentrating

Cognitive abilities

• Average to above average intelligence, appear capable; pedantic, literal
• Weakness in comprehension and abstract thought and social cognition (e.g., intellectually know what to do, not able to implement when needed)
• Weakness in executive functioning, attention (e.g., relevant/irrelevant, shifting), cognitive flexibility (i.e., rigid thinking)
• May have splinter skills (e.g., hyperlexic but lack comprehension; hyperverbal, extensive factual knowledge about subject of interest)
• Academically: weak in reading comprehension especially if requires inferential thinking; problem-solving, organizational skills

Restricted range of interests

• Early play behaviors – repetitive, stereotyped, “pseudo-pretend play”
• Interests range from repetitive routines with objects to circumscribed interests (e.g., timetables, calendars, physics, animals) – interests pursued relentlessly, do change every year or so

Sensory, Motor/perceptual-motor

• Hypersensitive to some stimuli (e.g., sound, temperature, texture, smell, vestibular input)
• 50-90% individuals with Asperger’s have problems with motor coordination (e.g., stiff gait, ball skills, balance, manual dexterity, handwriting, rush through rather than pace appropriately, low tone, rhythm, imitation of movements) Attwood, 1998
• Note: clumsiness not unique to Asperger’s

Emotional/Behavior Presentation

• May be anxious; reactions may be extreme or atypical (e.g., repetitive questioning, stereotypies)
• May become aggressive; may “shut down”
• May make irrelevant remarks, inappropriate themes (e.g., physical flaws, personal details; sex)
• May become depressed due to lack of success
• Oversensitive to criticism

Developmental observations

• Fascinated with letters/numbers, precocious in learning to talk – may be able to decode words, but not understand them
• May not have been identified until school age given verbal skills. With careful observation will note good use of grammar and large vocabulary, yet content of speech impoverished, much copied inappropriately from others or books; know long words, but not everyday ones
• Imaginative play not occur in some, in others engage in some “pretend play” though qualitatively different from peers (e.g., 1-2 themes, re-enacted repetitively) and may not necessarily involve other children
• Stereotypies decrease over time
• Major behavior problems may decrease in middle/late childhood

Little disagreement re: whether Asperger’s Syndrome is on autism continuum

Controversial Issues in Diagnosis of Asperger’s (AS) vs. High-Functioning Autism (HFA)

(Gillberg & Ehlers, 1998; Wing, 1981):

Debate over whether…

• Motor skills should be viewed as differentiating feature between AS and HFA (e.g., “typical in AS, not HFA”)
• AS or HFA could be associated with MR
• Language development impaired in HFA, but spared or strength in AS (e.g., ICD-10, DSM- IV TR)
• Diagnosis of HFA and AS can be made in same person at different stages of development (e.g., HFA as young child, AS later)
• HFA and ASA refer to same or distinct groups of individuals - ideally would like mutually exclusive diagnostic criteria - at present none exist

Validity of Asperger’s Syndrome vs. High-Functioning Autism (HFA)

 (Klin & Volkmar, 1997)

One approach…examine brain function:

• Frontal lobe dysfunction in AS and HFA inferred from executive function deficits (which also impact social communication skills)
• CAT scans of 18 AS, 22 HFA children – some cerebral atrophy in 17% of former, 22% of latter group (Gillberg, 1989)

Other Diagnostic Concepts Sharing Aspects of AS

(Klin, Volkmar, 1995, 1997)

• Semantic Pragmatic Disorder – speech/language competent in form, impoverished in content and function – early history gathering important in distinguishing
• Nonverbal Learning Disability (e.g., deficits in tactile perception, motor coordination, organization, nonverbal problem-solving; difficulties adapting to new situations; deficits in social judgment, interaction; strengths in rote verbal abilities, reading recognition)
• Developmental Learning Disability of Right Hemisphere – deficits interpreting and expressing affect, other interpersonal skills – leads to hypothesis that AS may be right hemisphere, HFA/autism may be left hemisphere dysfunction
• Some suggest that we may be that we’re just seeing the overlap resulting from different perspectives (e.g.,SLP, neuropsychology) on heterogeneous group – result is multiple labels for some of same phenomena vs. different entities – more research needed, clean dx

Differential Diagnosis/Concomitant Conditions

(Wing, 1997)

• Attention Deficit Hyperactivity Disorder
•  Tourette’s
•  Hearing Impairment
•  Visual Impairments (associated with CNS disorders such as septo-optic dysplasia, congenital rubella encephalopathy, IVH)

Strategies:

Educational and Environmental Supports

• Understand student’s particular pattern, look across settings, across domains (e.g., ADL, academics, social, sensory)
• Organizational strategies
  • Schedules
  • Routines
  • Minimize number of transitions
  • Dual sets of materials (e.g., clothes, books)
  • Systems that “anchor” materials

Developing Strategies for Individuals

LEARNING STYLE

Long- and Short-Term Memory

1. Does student demonstrate both long- and short-term memory across all academic and social areas?
2. Does the quality and quantity of information in long-term memory differ if the student is presented with the information verbally versus in written form?
3. How does the student memorize Information that she needs to learn?

Rote vs. Meaningful Memory

1. Does the student tend to learn rote easier than meaningful information?
2. Does the student learn information better if he hears it or sees it?
3. Does the student perform or complete a routine, but confuse or miss specific steps?

Part- to- Whole vs. Whole-to-Part Learning

1. Does the student begin a new task by scanning the material to gain some insight into the content or does he attend to every detail?
2. Does the student learn better using a part-to-whole or whole-to-part format? In math, whole-to-part learners learn the concept first and then the facts. These are the learners who have to know why or how something works before they can focus on memorization. Part-to-whole learners use the reverse strategy, memorizing facts without necessarily understanding their basis.

Ask yourself:

• What specific activity am I asking student to do in this environment?
• Have I conducted a thorough task analysis?
• What are the skills demanded in this activity?
• Does the student consistently and independently perform the skills in a familiar setting?
• Are there any time constraints/expectations for speed?
• Does the task require any movement place to place?
• Does the task require: reading? Motor skills? Sequencing? Math? Etc.
• Have I had him/her do a dry run of the activity in a familiar setting? With any difficulties noted during this attempt, did I seek the input of other service providers/consultants?
• Based on the assessment, does the activity need modifications (e.g., increased structure, decrease length of directions, jig to remind student of steps, materials stabilized in some way)?
• Have I introduced him/her to the new setting prior to having him/her apply those skills?
• What are the social and sensory demands of the activity?

  Keeping track of my money and my identification cards…
  It’s not out of sight out of mind any more!

Note: The list of descriptive features that follow should be used as “often occurring but not always in the form described, not exactly the same in all children and adults” – Aspergers Syndrome, like all autism spectrum disorders is just that “a spectrum disorder” with variation.

Next series of photos showed the following schedule types:

• Whole Day, Printed, Portable Schedule
• Picture Schedule

SCHEDULE FOR THE WEEKEND

10:30 AM Go to bus room with belongings

 Give Mr. Dan your packing list

2:30 PM Arrive at campus

 Get dorm assignment Unpack - Have Mr. Dan check where you put everything

 Hang out with Mr. Dan’s group during free time – no leaving

5:30 Dinner

7PM Watch events

9PM Supervised free time – pick from “watch a movie, play games…” - no going to other kids rooms, no walking campus

10PM Get ready for bed (wash face, hands, brush teeth put everything back where it belongs)

Example of Schedule for an Away Track Meet

(another slide included sample packing list to organize and facilitate keeping track of things – individuals with Aspergers having weaknesses in executive functioning)

Other Strategies…

• Overwhelmed with amount (e.g., if two sides, columns)
• Break down assignments; reduce amount of homework Space out on paper
• Support Social Skills Development
• Teach coping strategies:
  • Teach key phrases (e.g., “no big deal…” “not whether win or lose but how play the game”)
  • Provide positive/corrective feedback
  • Teach self-talk
  • Social stories
  • Provide “safe place” across environments
  • Teach relaxation
• Work on specific social skills – individualize!
  • Conduct structured observations, interviews with student (e.g., Mike, Mark – friends, marriage)
  • Teach conversational skills – greeting, leaving; questioning, listening; comic strip conversational modeling; social scripts; role playing (Attwood, Gray, Quill, etc.); conversational reparation
  • Social rules
  • Unspoken curriculum

Example of Staff Suggestions

1. Redirect Peter to the task at hand when you notice that he is listening to conversations between other people.
2. Help Peter fit into a discussion by asking him [in list form] what his experience has been in that activity; or “Mark, what is your favorite event - ___ or ___?” It gives him a jump-start to the conversation – he has chronic ‘tip of the tongue’ and knows how to talk only about things he has LOTS of information about (e.g., politics) - it is not a matter of his not listening to others; he needs adults to help him fit in.
3. Remember that spare time/unstructured free time is the hardest thing for Peter - help him out by offering him special jobs, specific things he can do.
4. Recognize that he cannot problem solve, anticipate what might happen, get himself out of a tough spot once he is in it...without adult structure and close supervision, cannot keep track of his belongings – once he puts something down, it is ‘out of mind’
5. Recognize that Peter’s behaviors and comments can be seen as ‘cute’ or ‘funny’ - they are often what he believes to be true or “OK”... Teach him the appropriate way to engage others. If we just say “Mark don’t do ___” it does not tell him what to do in that circumstance or situation.

RULES FOR THE WEEKEND TRIP

1. Do not bring any money - Mr. D has whatever the students will need!
2. Follow directions - go directly to where you have been told to go - do not stop to chat with others along the way
3. Check in with Mr. D (e.g., when you have a question about getting along with kids your own age, what it is OK to do or to say)
4. Stay with Mr. D’s group, in Mr. D’s area – do not wander off even if other students ask you to go or tell you “it is OK” - Mr. D has the final word
5. No talking about other people, no touching people you do not know

Support Communication/Language Comprehension

• Avoid metaphors, words with double meanings; or teach meaning directly; true even for math (e.g., Michael)
• Be concrete presenting new concepts, abstract material
• Verify comprehension of words child is using, read the child’s cues
• Use visual supports (print, Braille, picture)
• When speaking - keep it simple, specific, short, pause
• Write it down, write it down, write it down!
• Writing assignments – use supports (e.g., “in your paragraph, answer these four questions…”)

Need for sameness

• Use structure, schedule, routines
• Prepare for change in advance (e.g., zigger-zagger)
• Re: restricted interests/anxiety – identify set times to engage in behaviors
• Use interests to teach skills, content

Sensory sensitivities

• Monitor, minimize extraneous noise (e.g., voices, equipment), visual distractions (within classroom, hallway, cafeteria, gymnasium, recess)
• Be aware that even normal levels of auditory and visual input may be perceived as “too much” or “too little”
• Monitor temperature changes as some children are heat/cold sensitive
• Monitor smells (e.g., cleaning fluids, cafeteria smells, perfumes, cosmetics)

Motor skills

• May do better with fitness vs. competitive sports
• Monitor written work, develop compensatory skills
• Examine/teach/structure ADLs

Contact Information:
Terese Pawletko, Ph.D.
PO Box 383
Portsmouth, NH 03802
Email: TERESEPAWL@yahoo.com
Ph: (603) 396-1645 Fax: (603) 431-9758
Please do not use these slides for presentation, but solely as reference.

About the Consultant:
Dr. Terese Pawletko has worked with children since 1976, first as a teacher of the visually impaired. Starting in 1989, after completing her doctorate in School Psychology at Penn State and a postdoctoral fellowship in Pediatric Psychology at UNC, she worked at the University of North Carolina-Chapel Hill School of Medicine with chronically ill children, with autistic students, their parents, and related service providers. In 1997 she joined the staff of the Maryland School for the Blind where she worked with multiply handicapped children with a variety of disabilities including visual impairment, autism spectrum disorders, cerebral palsy, mental retardation, and learning disabilities. She has also been active in training staff to work with these students. While at MSB, Dr. Pawletko and her colleagues developed the first program in the country for children with visual impairment and autism. She is considered a national expert in this area. She is currently available for evaluation, consultation , and training regionally, nationally, and internationally. Dr. Pawletko is licensed as a psychologist in New Hampshire, and certified as a school psychologist in Maryland and New Hampshire.

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Last Revision: September 16, 2002