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AER/DENVER - JULY, 2000

MARY T. MORSE, Ph.D.
Education Consultant for Children With Special Needs
247 Pembroke Hill Road Pembroke, NH 03275
Phone (603) 485-7674
Fax (603)-485-1958

CORTICAL VISUAL IMPAIRMENT (CVI)

Cortical Visual Impairment (CVI) is a disability resulting from either an insult to the brain or how the brain organization became configured during prenatal development. CVI effects how an individual understands the visual information received by the eyes. The location and extent of the brain insult determines which functional behaviors will be effected. For those who show some visual responses during infancy, the prognosis for increased functional use of vision is good. Indeed, many (not all) may use vision as their primary information gathering sensory modality when they are older.

Commonly Known General Characteristics of CVI Include

  • Wide variations in functional use of vision: Some individuals demonstrate no visual responses at any times while other individuals have considerable use of vision
  • Wide variability in an individual's ability to efficiently use vision on a consistent basis.
  • Wide variation in regard to additional disabilities which may/may not include other ocular handicaps, medical and health problems, seizures, hearing, communication, self care skills, feeding, cognition, type of visual and auditory stimuli understood, interpersonal relationships, learning, etc.
  • Wide variability within individual persons and between individuals in managing multi-sensory demands and planning/implementing motor responses
    • Tendency to use peripheral vision more than central vision
    • Possible depth perception difficulties 
  • Tendency to look away when reaching
  • Tendency to have associated central auditory processing problems
    • may be very interested in sounds
    • may give the appearance of understanding all they hear
    • may be particularly responsive to intonations rather than actual words

Characteristics of CVI Not Commonly Addressed

Some individuals with CVI do not have obvious additional disabilities. These individuals may be able to walk, care for themselves, talk, and have excellent visual behaviors for some types of stimuli. However, they may have visually-based difficulties with specific stimuli and skills that are of neurological origin. These individuals may have difficulty or the inability

  • to recognize objects in general or specific categories of objects - especially stationary objects
  • to recognize and discriminate one human face from another (Remember: All faces have eyes, ears, nose & mouth and, thus, are structurally the same.)
  • to recognize a human face as more than an object unless it moves or talks.
  • to organize oneself spatially
  • to comfortably move through even a very familiar environment
  • to recognize and use visual symbols which may include print, photographs and/or line drawings
  • to recognize colors
  • to point to various parts of their own body
  • to distinguish left from right.

Prosopagnosia and Facial Agnosia

A particular sub-set of individuals with CVI may have difficulty or the inability to recognize familiar faces (Prosopagnosia) or difficulty or inability to recognize any face, familiar or not (Facial Agnosia). Processing the human face is an extraordinarily complex visual,neurological, social, and communicative process. These individuals may have several of the following characteristics:

  • May have different neurological sources causing the condition.
  • May have variations between persons in brain imaging results.
  • Will show variations even within this sub-group of persons with CVI. For example, may/may not have associated agnosias (not recognize objects and/or certain categories of objects and/or two dimensional visual representations and/or certain categories of two dimensional visual representations).
  • May avoid visually fixating on the human face OR
  • May stare intently at the human face OR
  • May look toward only one part of the face (i.e., mouth) rather than the facial configuration
  • May be able to name and/or point to various parts of the face but not recognize and identify the total configuration.
  • May recognize some faces from one orientation, within context, but not be able to generalize that face to other orientations or situations.
  • May want to touch people - especially their faces
  • May not realize that they differ from others in recognizing faces
  • May not understand totality of language but brighten considerably when language is combined with emphasized intonation.
  • May understand language but have difficulty in using pronouns
  • May use language but tend, at times, to "talk to the air"
  • May have difficulty in discriminating one voice from another
  • May have excellent short term auditory memory
  • May not realize a person is present unless the person says something or moves
  • May focus on a specific aspect of a person for identification (if they realize person is present)
  • May treat people as objects
  • May have difficulty relating to peers
  • May appear to prefer objects to people
  • May have "subtle" additional disabilities such as fine and gross motor dyspraxia, social interactions, pragmatics of language, behavior, spatial disorganization
  • May show definite ability to learn - especially colors, shapes, repeating alphabet, etc.
  • May/may not have difficulty interpreting some/all types of two dimensional visual representation (very variable)
  • Some may be able to recognize pictorial representations of faces but not be able to do so with tangible face
  • May have difficulty managing multiple sensory-motor demands - frequently said to have sensory integration problems
  • May have difficulty modulating their states of arousal.
  • Frequently said to be inattentive and distractible - sometimes labeled ADHD, PDD, autistic
  • Perceptual impairments usually are an insufficient explanation for face-specific agnosia
  • For many of the children, however, vision is their primary information gathering sensory modality
  • Individuals who have the condition from birth may function better with the condition than those adults who suddenly acquire the condition due to some insult.

Some Diagnostic Strategies

  • What is the visual diagnosis?
  • What is the cause (etiology) of the condition?
  • Have any types of brain imaging procedures been done?
  • Parent reporting
  • School reporting
  • Systematic Observations

An Initial Reading List To Begin The Process of Understanding

Bolles, E. A Second Way of Knowing: The Riddle of Human Perception. NY, NY: Prentice Hall Press. 1991.

Buxbaum, L., Glosser, G., & Coslett, H. (1999). Impaired face and word recognition without object agnosia. Neuropsychologia, 37, 41-50.

Bruce, V. & Humphreys, G. (1997). Object and face recognition. Journal Visual Cognition - Special Issue. England: Taylor & Francis Publishers.

Choisser, B. Face Blind- an online book. www.choisser.com/faceblind/about.html.

Damasio, A., Damasio, H., & Van Hoesen, G. (1982). Prosopagnosia: Anatomic basis and behavioral mechanisms. Neurology, 32, 331-342.

Dennis, M., Kaplan, E., Posner, M., et al. Clinical Neuropsychology and brain function. Hyattsville, MD: American Psychological Association, Inc. 1989.

Dutton, G., Day, R. & McCulloch, D. (1999). Who is a visually impaired child? A model is needed to address this question for children with cerebral visual impairment. Developmental Medicine & Child Neurology, 41, 211-213.

Farah, M. Visual Agnosia: Disorders of Object Recognition and What They Tell Us about Normal Vision . MIT Press, Bradford Books. 1990.

Fery, P. (1997). Associative visual agnosia without perceptual impairment: A case study. Online .

Gauthier, I, Behrmann, M. & Tarr, M. (1999). Can face recognition really be dissociated from object recognition. Journal of cognitive neuroscience, 11, 349-385.

Humphreys, G. To See But Not to See: A Case Study of Visual Agnosia. England: Taylor & Francis Publishers. 128 pages. 1987

Jambaque, I., Motron, L., Ponsot, G., & Chiron, C. (1998). Autism and visual agnosia in a child with right occipital lobectomy. J Neurol Neurosurg Psychiatry, 4 , 555-60.

Jan, J. & Freeman, R (1998). Who is a visually impaired child? Developmental Medicine & Child Neurology, 40, 65-67.

Klin, A., Sparrow, S., de Bildt, A., et al (1999). A normed study of face recognition in autism and related disorders. Journal of autism and developmental disorder, 29, 499-508.

Morse, M. (Spring, 1999). Cortical visual impairment: Some words of caution. RE:view , 31, 21-26.

Morse, M. (1992). Augmenting assessment procedures for children who have severe and multiple handicaps in addition to sensory impairments. Journal of Visual Impairment and Blindness, 86, 73-77.

Morse, M. (1991). Visual gaze behaviors: Considerations in working with multiply handicapped/visually impaired children. RE:view, XXIII, 5-15.

Morse, M. (1990). Cortical visual impairment in young children with multiple disabilities. Journal of Visual Impairment and Blindness, 84, 200-203.

Mary Morse, Ph.D.*, Terese Pawletko, Ph.D. & Lorraine Rocissano, Ph.D.**
* Educational Consultant, N.H., ** Psychology Department, Maryland School for the Blind

AER/DENVER, July 18, 2000

Note: the following sections were depicted as "icebergs." They detail the key diagnostic features of autism using an iceberg approach - the behaviors one might observe on the surface, and the processing difficulties that might account for them.

Pattern and Predictability

YOU SEE:

Autism

  • Gets fixated on certain activities or sensory stimuli (e.g., certain visual and auditory patterns)
  • Insistence on things remaining the same (e.g., sequence of events, placement of objects)
  • Performance may be better with certain materials or in familiar context - may seem more impaired in new context

CVI

  • Fixated on certain sensory stimuli (e.g., certain colors, lights, finger or hand gazing, certain visual patterns)
  • Performance may be better w/some types of visual stimuli than others (e.g., objects, faces, spatial orientation) and in familiar context - may seem more impaired in new context

What you do not see: 

Brain is looking for patterns it can recognize (e.g., visual, auditory; sequencing) in the environment - child may not recognize different phonemes and their pattern and sequence, yet recognize pattern in inflection or music and thus, more likely to attend to the latter

Processing Problems: Figure-ground

YOU SEE:

Autism

  • Cannot discriminate foreground from background noise (e.g., seems to attend to conversations across the room while ignoring language directed toward him).
  • Fiddles with string while ignoring toy the string is attached to.

CVI

  • Difficulty discriminating what visual stimuli is important to attend to
  • Does not see and/or show recognition of some types of visual stimuli


What you do not see: 

Brain is having difficulty sorting essential from non- essential information, brain may perceive things as a whole for some individuals, or attend only to certain details disregarding the gestalt.

Processing Problems: Multi-sensory Input

YOU SEE:

Autism

  • Stops listening when cat jumps
  • Sensory overload can lead to total or partial shutdown, or over over-arousal

CVI

  • Tends to look away when reaching/touching on lap
  • Has more difficulty in using vision when managing other sensory or motor demands
  • Sensory overload can lead to total or partial shutdown, or over over- arousal

What you do not see: 

  • Brain is having difficulty regulating and processing information coming in (e.g., type, rate, amount, multiplicity)
  • Brain may only be able to process information from only one modality at a time
  • Can suffer from cumulative effects of overstimulation

Do Not Spontaneously Generalize Learning

YOU SEE:

Autism

May understand scripted directives in context but not out of context

CVI

May recognize objects or people in familiar context but not in unfamiliar context

NOTE: typical child can be taught and know "a cup is a cup" across settings; autistic and CVI children are not able to apply old learning to new situations without specific instruction.

What you do not see: 

Brain relies on the "total package" to comprehend the situation. The package may include a specific subset of the following kinds of features: the sequence of events, location, specific materials, specific person teaching, specific words, etc. etc. etc. to define "the event" or "the concept." What feature the child uses as an anchor is unique to the individual.

MISLEADING BEHAVIORS: Instability of Function

YOU SEE:

Autism

  • No reaction to loud noise at one one point in time, but may have extreme reaction at another time (may change moment to moment)
  • Seems to understand instructions one day, seems lost the next

CVI

  • At one point in time seems to recognize objects and/or persons, but at another time (even moments later) may not recognize object or person

What you do not see: 

Parts of the brain that regulate sensory thresholds, efficiency of neurotransmission, and ability to access memory may all impact on the child's functional ability at any point in time. This is also true for the child's physical condition (e.g., illness, medication side effects, fatigue).

Note: the sections above were to begin to alert VI teachers to the some potential similarities and distinctions between some children who are autistic and other children with CVI. The next sections offer concrete suggestions for intervention and make distinctions between what is used for non-autistic vs. autistic visually impaired children; also to review the components of structured teaching that we use with our autistic-vi students across settings.

Comparing Strategies for the Blind vs. Blind Autistic Student

For a blind child:

  • Use a lot of language paired simultaneously with object exploration.
  • Use a lot of vestibular input, tactual input.
  • Moderate levels of extraneous noise generally will not cause distraction.
  • Provide lots of social stimulation. The child can be expected to enjoy a variety of social contacts.
  • His sensitivity to social reinforcement, including withdrawal of attention, means that praise and "time out" will be effective motivators

For an autistic blind child:

  • Use brief statements, moderating the pace of speech; pace of exploration of object.
  • Control the amount & type of input so child is not over aroused, unable to attend.
  • Be aware of impact of even subtle noise on child's stress level and ability to attend.
  • Balance social time with alone time. Child may often find social experiences aversive rather than reinforcing.
  • Social experience is generally not important to child. Praise, "time out," are typically not effect motivators.

Components of Structured Teaching

Physical Structure

  • What activity will occur in "X" location?
  • What sensory sensitivities need to be addressed by the physical structure?

Ideally, only one activity occurs in one location (e.g., teacher table is sole place that 1:1 work occurs; independent work desk used only when child works independently; independent play activities occur in one location; craft activities occur in a different location)

Processing and sensory needs: use controlled language, minimize extraneous noise through use of sound absorbing materials (e.g., tennis balls on bottom of chair feet, hang sound absorbing materials from windows and walls, replacing faulty buzzing fluorescent bulbs, staff to use conversational tones only); use barriers (e.g., book cases) to define space, provide visually calm environment

Schedules

  • What will we do?
  • In what order?

Minimizes demands on memory and attention, decreases problems with time and attention, compensates for problems with language comprehension, aids motivation (e.g., "first work, then play"), and allows for greater independence in functioning.

Individual Work Systems

  • What am I going to do?
  • How much will I do/for how long?
  • When will I be finished?
  • What comes next?

Predictable, methodical, consistent approach to tasks - takes advantage of autistic individual's love of sameness - follows left to right, top to bottom format

Modify work system based so child can be successful in independent completion of task - if can't be independent, back down and add more structure

On the AER listserve, several folks requested assistance regarding writing appropriate (e.g., measurable) IEP goals in the area of social skills for children with visual impairments who also presented with Aspergers Syndrome. As many of you know, Aspergers Syndrome and other autistic spectrum disorders have a cluster of behaviors that define them diagnostically, all of which interact and contribute to what we see in children and adults. What follows is my effort to provide some direction to Brandi as well as "food for thought" (e.g., broader perspective, going beyond the observable behaviors to suggest some underlying causes) to parents and professionals in a timely (though incomplete) fashion. It is based on my training and clinical experience with children and adults who fall within the autistic spectrum disorder, with children with visual impairments, and now with the dually diagnosed.

Terese Pawletko, Ph.D.
Licensed Psychologist (former vision teacher)
PO Box 171, Hollis, NH 03049
Phone: 603/396-1645
Email:  

Dear Brandi,

You're not alone in your questions/concerns re: children who are VI and within the autistic spectrum. Several other TVIs and a parent emailed me directly about diagnostic issues, strategies for social skills, etc. I have to ask you to bear with my long response - I've opted to review some of the diagnostic features since not everyone on this listserve may be familiar with them; I'm also "long winded" because not seeing your student, not being able to ask questions, review records, etc. makes it more difficult.

You mentioned that your student is a 7th grader, who has some vision (in the legally blind range). That is very helpful to know because, as you so aptly pointed out, vision is not your student's main problem - rather, her communication and social impairment is likely to drive her program (and that is where input from an LD teacher or speech/language pathologist or autism specialist may be helpful) with her visual impairment being taken into account and vision used maximally. You (and she) have an advantage here as most programs for children who fall within the autistic spectrum rely very heavily on visual supports (e.g., picture systems; visual structure and organization). With the students I have been involved with who are autistic and visually impaired, they will use any vision that they have given the auditory/language world can be pretty unreliable for them.

Re: her diagnosis not being 'official' as your student's doctor did not feel comfortable diagnosing her as a child with Asperger's syndrome given she has a visual impairment - this is not the first time I've encountered this either - caution is good as one runs the risk of over diagnosis (e.g., we've heard comments like "he flaps his hands when he's excited, it is something autistic children do, therefore he must be autistic"), yet being overly cautious may result in under-diagnosis and lead to inappropriate interventions. Autistic spectrum disorders are a CLUSTER of symptoms that involve impairments in language/communication and social relatedness; results in restricted interests, and need for sameness, not defined by the appearance of just one behavior (e.g., stereotypies).

Children with Aspergers specifically have the following areas of deficit:

  1. Social interaction (poor social skills, inability to read social cues, inability to take the perspective of another, shift attention, maintain topic in conversation, etc.); have most difficulty in less structured settings; difficulty recognizing relevant from irrelevant information.
  2. Communication (both verbal and non-verbal). Their own body language and facial expressions can be odd or stiff; they have difficulty reading the body language of others, so would not pick up cues such as 'boredom'. Spoken language is often not entirely understood (so kept simple and concrete). Their own language can be pedantic (e.g., uncharacteristic for a child that age), used inflexibly (e.g., use phrases they've memorized); have unusual qualities (e.g., too loud, too soft, variable inflection); they may have word retrieval and sequencing and organizational deficits; difficulty maintaining or shifting topics (e.g., they may know a lot on their interest, but almost nothing on topics of interest to peers, nor on a topic under discussion in a lecture - esp. given the rapid rate at which spoken oral language moves). Often because they are so verbal, people assume that their understanding (and visual/spatial, organizational, motor skills) are at the same level - not so. The intersection of these two areas of deficit results in the children with Asperger's talking "at" rather than "to" you, giving information rather that holding proper, give-and-take conversations. The youngster you describe as "seeking attention" from the teacher may, in fact, be filling time that the teacher has given as "time to start homework" (unstructured time being difficult for children within the spectrum) or as her way of participating in class (since she cannot keep up with the rate of discussion, knows she is to participate, but it is on her terms/her topic - not in an effort to be difficult, but given egocentricity, and difficulty accessing/keeping up with a topic under someone else's control, it is what one may see).  If she is to participate in a class "discussion" it may be important to have the question asked be factual vs. abstract (since these children are literal), and even take the form of a multiple choice to help jump start her. For instance, a young man, I'll call Scott, LOVES to talk about history and politics (and that was before the election). He is in a Health class and they are discussing something about athletes and cardiac fitness. He loves being part of a class, interacting, but is not able to just jump in (and under these circumstances if he did it sure wouldn't be about fitness, though he is a runner). The teacher's job here, knowing Scott has his hand up and is likely to be off topic, is to help Scott join the discussion by giving him a multiple choice - "Scott, let me ask you - if you were trying to maintain good fitness, would you choose running, swimming, or skiing?" Then, the teacher could guide him from there. It provides him with the necessary information and facilitates the shift.  Now, why did I go through this? It is hard to know why your student is "off topic" - likely it is dependent on the situation (e.g., time of day, level of abstractness, level of anxiety, level of or lack of structure - all of which require different fixes/interventions). So, in answer to your question re: "what IEP goals should I write?" -- that depends on the reason your student is engaging in the behavior, it will likely require that the staff tailor the class time to meet her needs for increased structure - then in the IEP, you and the other staff would be looking at your student's ability to implement/follow the strategies after a period of instruction, implementation within the various settings, etc., etc., etc.). One other thing - somewhere in your email you mentioned that you are only there at the end of the day, with your primary responsibility being help with homework. Friday being the social skills session - thus, you were not there to prompt her. It is a good thing that you're not there to prompt her, because she would then she would only do it when prompted, likely only prompted "by you." You are not there 24 hours a day. You see, all the staff need to be on the "same page" in working with her.Now I am going to say something heretical. She needs social skills work. But, it sounds to me like you are all still in the assessment phase of this (informal assessment/observation). So you may not be ready to define goals and objectives. Does that mean it cannot be worked on? No, but I could come up with LOTS of goals/suggestions, but totally miss the mark and not have the goals tailored appropriately to your situation.  I'm not trying to be difficult - just cautious - and encouraging your IEP team to work with your district autism specialist because your student's is not driving these behaviors and confusions. Let me elaborate - you wrote: "I can think of plenty to work on, but I am not there all day to observe her and prompt her, take data, etc.  She asks questions that are irrelevant in class - I want to decrease this behavior, but I am not there with her in her classes to take data and work on this."  The "WHY" she is asking questions irrelevant in class could be because: 
    1. the material is too abstract or being presented too rapidly, therefore she has no idea what is being asked/is in a world of her own and wants an answer to whatever is currently her topic of focus; 
    2. she is distressed and may know the answer, but one coping strategy that she may be using is to "ground herself in the familiar" (e.g., her topic; for lower functioning children you may see stereotypies or other fixations pop up); 
    3. she wants to participate in the social interaction and the only way she knows how to "join in" is on her topic (and it may be used for every social interaction); 
    4. she wants to interact (and middle school has little free time, and social interactions are challenging for children who are "intact") and the classroom is the only time that the noise levels and other sensory stimuli are under relative control, and thus she is "settled" and her egocentric view says "other folks are asking and answering questions" and she is not apt to see the difference and no one has defined/structured in/built in a time for me to do this - this is as good a time as any" and so on and so on.
    (NOTE: that she is not likely to do all the cognitive "self-talk" that I just did in explaining the various reasons you see what you see - just trying to illustrate the possibilities underlying what you see on the surface, thereby defining very different solutions for staff involved with her. The way to decrease the behavior is to address the "why" it is happening. It is happening for a reason and the environment is maintaining it. Hence the need to involve someone familiar with autism - which could be a recommendation of the IEP team.Quickly, other features these individuals exhibit:
  3. Narrow interests and preoccupation
  4. Repetitive routines and/or rituals, inflexibility (which contributes to difficulties shifting attention, leads to an individual doing the same activity the same way, or demanding that the same person be present when he/she is doing that activity. They may have strong rote memory but learn without understanding (and don't necessarily understand what they can repeat in toto). And trying to reason with them/provide rationales may prove ineffective (because of the difficulties with language, the fact that this demands the ability to take the perspective of another, etc.). As noted above I think the thing that is deceiving with children with Asperger's is that they are assumed to have higher overall ability (e.g., expected to handle visual/spatial, organizational, mathematical/sequencing /time management tasks, social situations at a level commensurate with their verbal skills) because of their verbal facility. Yet Scott, the history and political buff (almost professorial in demeanor) routinely lost money, his books, coats (pretty much everything he put down). Thus frustrating staff because "he should know better" (this was before I gave him the diagnosis of Aspergers). He is very, very learning disabled in the visual/perceptual/motor, language, and social areas (hallmark features of Aspergers). What saved him? The adults in his environment took charge of developing individualized organizational tools, tangible schedules, and anticipating all the breaking points/glitches before turning them over to him.

So, where should you begin? In light of these features (any/all of which could be things she has difficulty with...see the partial report that I attached at the end - Note: I do not expect that you'll do this level of detail, but it gives you a sense of the scope of the learning problems that can be encountered in this population)

  1. Pick one area of ADLs.  Think about where she is experiencing "breakdown." Look for ways to implement stable organizations and routines - even using a checklist that is posted.
  2. Request an assessment of her social/communication skills (if it hasn't been done already), as she has impairments in both, above and beyond what we would expect given her visual impairment. The results will guide where the whole staff should focus (since it needs to be across the board, not once a day outside the setting where she needs to apply the skills and structures). The team then has the opportunity to develop "within situation structures" in conjunction with her teachers. For instance: I had a young man who was autistic and mild-MR (not visually impaired) who loved to talk about his topics. He would engage ANYONE on them in any location. He also did not understand when/how social interactions ended or what the appropriate level of intimacy was for a given situation (e.g., might ask very personal questions of or hug a complete stranger); and each one has different defining features - e.g., leaving the library, going to the barber, to a party. I am ever amazed at the complexity of the social world and the level of detail/concreteness that these individuals need in light of their literalness and inflexibility given brain function. With this young man, we had scripts/rules for each situation that were reviewed with him before going to the situation. He had a copy to read in the car. He reviewed it before getting out of the car. He had a list guiding him back to the car, and what he was to do when he arrived 
    • e.g., library - "just one more book" would be his request, but there is always "one more book". So we wrote a sequence of events, including "10 minute warning, then 5 minute warning
      • if not pick book at 5 minute mark, no more chances until the next time visit; 
      • if tantrummed, would have to remain at the group home when the group went the next time because he did not follow the rules" 
    Each outing (e.g., trip to barber, to CD store, to grocery store) had its own rules/sequence. Or, whenever possible a general set that could be used across settings - but ALWAYS IN WRITING since one cannot rely on verbal/auditory input).

Folks need to structure the day and even provide structure/guidelines for "unstructured time." With your student, perhaps she needs a defined "personal talk time" (where if class has 5 minutes left, she can ask the teacher 1 question of topic of interest to her at the teacher's desk). Left to her own devices, she'll do what she thinks is OK. Unstructured time (or less structured), social, or free time can be 'lethal' for children within the autistic spectrum. It can be anxiety provoking in some cases, at which point one may see children engage in stereotypies (e.g. repetitive monologues or questions that they already know the answer to). The TEACCH staff have a great phrase: "Work is play, and play is work for children within the autistic spectrum disorder."

You asked for sample recommendations. I pulled some snippets from an evaluation I did (shorthanded it here as it was 12 pages) on Scott (17 year old at the time) in which I gave him the diagnosis of Asperger's. He had been diagnosed as ADHD, OCD, Organic Brain Syndrome, LD in reading and written language, etc. etc. etc. - about 10 labels, some of which no longer exist. As he had all the characteristics, I want to illustrate some of what is beneath the surface with these students, as well as, share recommendations for one student.

"Scott is a deceivingly complex young man with a tremendous scatter of skills and abilities. On first encounter, Scott appears extremely verbal, conversing quite passionately and articulately about difficult subjects (e.g., political history) not typically of interest to adolescents. He is socially interested and attentive to personal details, remembering many specifics over long periods of time. Yet, his ability to deal with abstract concepts, or keep track of the money he just had in his hand or the book he took out of his backpack in an effort to locate something at the bottom of it. Scott is polite and empathic and yet can be brusque and at times rude to those people who are trying to help him, intolerant of peers who do not follow prescribed daily routines (e.g., tooth brushing); and have extreme reactions to events that many would let slide (e.g., staff being a few minutes late for a lesson). He wants friends, but can become overwhelmed and frustrated by the social situations.

Scott's social and learning behaviors are the result of the "goodness of fit" between his skills and abilities and the expectations and demands of the environment. When he is "not performing as one would expect" it is easy to assume "he isn't working hard enough," or "he needs more practice or to learn problem solving skills" or "more time in the setting," "it's just his attention deficit disorder". This is far from the case. He is trying to do his best, wants to succeed and be "like the other students," wants to please the adult, etc. but without the adults in his environment taking his deficits into account, there is little chance for success, and high probability of anxiety, agitation, and anger (Scott's and the adult's).

While not defining features of Asperger's, other features warrant a comment as they impact on his ability to process information:

Sensory Systems

Scott has a documented visual impairment (as well as visual-perceptual-motor deficits) which results in limitations in distance vision as well as depth perception, figure ground, picking out essential details (visual-perceptual-motor tasks), etc. However, many other sensory systems are involved in daily functioning. Scott has hypersensitive hearing - hearing many extraneous environmental sounds (e.g., phone ringing, hum of a fan; NYC noise) and easily overhears conversations of others, both of which can be intrusive and compete for his attention. Note, that in the case of his overhearing conversations, it is not that he is "being nosey," but that he cannot adequately screen out these noises. The result is that Scott cannot focus on what he has to attend to (e.g., directions given orally, doing tasks that require much concentration). Scott's tactile and olfactory systems do not seem to be affected.

Social/emotional

As noted above, Scott is a very pleasant and cooperative young man. But for those familiar with him, he can also present as a very anxious young man. This is suggested by his rocking back and forth, either seated or standing; his picking at or posturing his fingers, facial expressions (e.g., gritting his teeth), and his tone of voice (also present when he becomes angry or agitated).

To those working with Scott, his emotional reactions to situations can be extreme. Why? One does not see the drip by drip' filling of his stressor bucket; nor have the history re: how he packages events and interactions with individuals and how these are then used by him to predict what will happen in the upcoming encounter. For instance, when the family was going to Buffalo for the holidays, Scott become somewhat obsessed at the prospect of visiting a particular relative. When I spoke to Mrs. Pullman she expressed surprise as it had been years since they had seen that individual; however, it turned out that this individual had picked on Scott. Because of his rigid, concrete, and somewhat packaged' view of the world every trip to Buffalo could cause these images and worries to resurface.

Scott has a great deal of difficulty coping with change. This is true for major changes and minor changes. Important to keep in mind with Scott is the fact that what we perceive as an inconvenience (e.g., construction on the Pullman back porch), may be seen as a major change and significant stressor for him, completely disrupting and redefining the world as he sees it (e.g., has to change his route and routine, shift the definition of porch,' can't problem solve or use self-talk spontaneously to settle himself). This level of distress results from several factors (e.g., slow processing time; difficulties shifting sets and accommodating related to the way his brain is wired;' inability to determine the correct sequence/adjustment to make in his day (can't even sequence changing fishbowl water). It is not that he does not want to do something, he is overwhelmed/has been derailed.

Scott is a very social young man, who politely greets everyone he encounters. He is very well liked by staff. Of concern, however, is his circumscribed understanding of social relationships lumping almost all relationships into the common category of "best friends." To his credit, Scott always leads in with a statement like "I don't know if you care to discuss this, but" While some may perceive it as endearing, it is clear that he needs rules and concrete supports and teaching as he could be at risk for abuse and being taken advantage of by strangers.

By report, Scott has a history of problems with peer interactions and the social skills necessary to initiate and sustain them. When one stops to think about it, this is not surprising as social interactions and relationships are fairly complex. For instance, one needs to know how to join a group interaction (e.g., pay attention to what peers are discussing, whether there is an opening and way to share in/be curious about the discussion or activity, read non-verbal cues re: acceptance, be flexible, take turns, be interested in the interests of others); appropriate verbal (e.g., flexibility in topic) and non-verbal behaviors (e.g., using an appropriate tone of voice, not rocking). Furthermore, his circumscribed interests (e.g., history, politics) are not ones most adolescents follow. Scott does participate successfully in the adult structured group activities (e.g., track, chorus, games night)

SUMMARY AND RECOMMENDATIONS

Asperger's is not a disease, but rather descriptive in nature and defined by a cluster of behaviors that is multi-determined rather than resulting from a single etiology. It shares some things in common with autism (e.g., cerebellar involvement, rigidity, circumscribed interests), but also has some significant differences (e.g., some average abilities in the verbal domain, socially interested, visual-perceptual-motor deficits).

Scott is delightful, earnest in his desire to do his best and please himself and others, as well as to learn new skills and participate in the planning and carry-through of his program and learning. He is also teaching us where he has problems:

  1. no problems with enthusiasm, cooperation
  2. does better with simple, concrete, specific language rather than long and/or abstract utterances
  3. deficits re: knowing how to execute things, problem solving, sequencing, applying the correct strategy at the right time and evaluating whether it is working; following a schedule (can recite it, but moving about - other things to distract him); motor planning problems; no time or money concepts; functioning "up in space;" weaknesses in math (e.g., number, time, amount, time management, money), visual-perceptual motor skills, reading and word recognition, efficient scanning, recognizing what the key features are, what to do when something goes awry
  4. complicate it by the fact that he has to move within and across environments and you've essentially lost him

In light of the results of this evaluation, the following recommendations and considerations are offered.

ACROSS SETTING CONSIDERATIONS:

  1. Use Scott's strengths and interests to develop his program
  2. Keep in mind that he is going to rely on adults to build in organizational strategies - left to his own devices, Scott will have difficulty identifying where to begin and end a task; how to organize it; how to recognize when he is having trouble and needs to get help
  3. Scott does better when the skills are developed in the context in which they will be used (or when he is applying already acquired skills to a new context).
  4. Staff need to realize that just because Scott can demonstrate a skill in one environment, with one set of structures and be successful, does not mean that either he can apply those skills to another setting or another activity. This will need to be taken into account and taught/structured into new environments.
  5. As with all visually handicapped children, one must assume that without deliberate teaching and demonstration that Scott will not know what the key features of an activity (or picture, or context) are, will not pick up concepts/information incidentally, etc.
  6. Scott needs all adults in his environment to have the same script, use the same terminology, with the same directions, teach and reinforce the same skills in the same fashion.
  7. Scott's current functioning in the area of daily living skills need to be examined and priorities developed such that we maximize his opportunities to learn these with the appropriate structures.
  8. Scott does better if things are stable, attached, are left in a consistent place for use in that place, and do not require transporting:
    • wallet, ID card, etc. to be placed on a ring that is then placed on a chain and attached via semi-permanent means to the inside of his fanny pack
    • have him leave notebooks/folders with important instructions in a specific place
    • use photos and/or templates on the actual surfaces to help Scott know where to place things
    • consider using "Tri-wall" cutouts to maintain organization of Scott's desk, dresser surface, etc.
    • recognize that once Scott is "up in space" (e.g., moving around the room, room to room, across the campus) any number of things can happen - he is unable to perform the skill demonstrated consistently while sitting or standing in one place; may forget where he is going and/or what he is to do; may stop to talk and/or set something down and lose track of it; may lose orientation, sequence, track of time, etc. etc. etc.
  9. Consider developing stable activity sequences (e.g., object or picture sequence that remains Velcroed in the laundry room so that Scott can do his laundry; a sequence for changing his fishbowl water) - these will be important to develop in consultation with appropriate service providers, test out with Scott, etc.
  10. Questions staff should ask when considering an activity:
    • What specific activity am asking him to do in this environment?
    • Have I conducted a thorough task analysis?
    • What are the skills demanded in this activity?
    • Does Scott consistently and independently perform the skills in a familiar setting?
    • Does the task require any movement place to place?
    • Does the task require any reading? Motor skills? Sequencing? Math? Etc.
    • Have I had him do a dry run of the activity in a familiar setting? With any difficulties noted during the dry run, did I seek the input of other service providers/consultants (e.g., O.T., speech)? Does the activity need modifications (e.g., increased structure, decrease length of directions, a jig to remind Scott of the steps, materials stabilized)?
    • Have I introduced him to the new setting prior to having him work/apply those skills?
  11. If a system or structure works it should remain in place - Scott gets some success, wants to try it on his own' figuring he's got the skills, but does not understand that the success is the result of his consistently using the structure. Scott can get overconfident and stops using the strategy (e.g., giving money to staff member) and is back to "the old ways." It may be very helpful to outline the specific goal with Scott (e.g., keeping track of his money), define the supports (e.g., wallet attached to fanny pack, check written to dorm staff, withdraw money' on as needed basis, keep bills flat in wallet, loose change in ___, etc.) and to have all parties concerned sign the contract, the frequency with which his progress will be reviewed (nightly checks of wallet, if criteria reached fade to spot checks, etc.), and the only conditions under which it will change (e.g., Scott has reached criteria and maintained behavior for ___ period of time, may fade to spot checks at least ___ per week, etc.).
  12. In new situations, Scott may do better if the number of choices he has is pared down. Also, if one really wants to know what Scott is interested in, how he feels about something, etc. use an inventory or some structured list to make the inquiries rather than asking open ended questions such as "what do you like to do for work?" Open ended questions make heavy demands on word retrieval, organization, memory, etc. as well as assume a student knows all the possibilities available, etc.
  13. If Scott is to get adult assistance, for instance, because he has a problem with computer and he did not comply it would be easy to get mad and yet, in some ways it was not totally his fault - why? He needs deliberate training on help-seeking' and following through on directions that involve moving to another space in the room and/or across settings. Being "up in space" and having to make executive decisions is hard for children with Asperger's and other neuropsychological difficulties. Scott even needs practice following directions that require that he go to an adult' to get help if he needs it; stop what he does before making another move. This needs to be done using deliberate practice and having the adult in close proximity, gradually moving further away from him with his repeated success at the current distance. A picture or large word cue saying "get dad" on the computer and over the shut off switch may also serve as a reminder. Make sure he has lots of practice doing it in your presence first...then gradually increase the distance (and do periodic booster sessions)
  14. Scott has been evaluated a number of times over the years and many recommendations offered. They should not be used without evaluating them in light of the findings of the current evaluation. For instance, in the past it was suggested that Scott be provided with a tape recorded copy of any book as well as being expected to "take notes via tape recorder." These are very complex skills - there are the listening skills demands (e.g., being able to hold in memory a significant amount of material, know how to pick out the key information, know what to do with the key information and how it relates to prior knowledge, etc.); the how to access the medium' (e.g., finding the correct tape, knowing how to operate the tape recorder but more importantly the set up of the books on tape - finding the correct page, recognizing whether you're on the right one, stopping the machine in time, etc.); then there are the organizational demands (e.g., bringing the right tape with you, keeping track of the recorder, keeping track of the tapes, having the recorder charged), etc. etc. etc. As anyone working with Scott can see, this is an overwhelming task and is not going to be one he'll benefit from using. Any suggestion/recommendation/ change in strategy needs to be examined in light of his skills and deficits; then tried in a familiar setting, debugged, and structured for maximum success and independence; put into place with close supervision, spot checks to maintain it, etc. prior to assigning it to Scott independently.

DORM/HOME SETTING

Organization of clothes:

  1. Within dresser - use slat dividers for drawers - consider an enlarged word label at the bottom of and/or on the outside of the drawer to help him know where to find things (would need to decide whether one would also want to use the outside of the drawer to keep track of how many' through a Velcro/picture system - might be better given it is at the site vs. on a board across the room).
  2. Have set laundry routine with object/picture sequence defined (recognize that it is more likely to be followed to its entirety if not competing with a preferred activity or started early enough in the evening to succeed).
  3. Identify a way to keep track of the clothes he has and where the breakdown is (e.g., are things not getting out of the dryer? Is he leaving any at the pool? Are any in his locker? What is he packing to take home and what is returning?) One strategy might be to have a visual inventory' of all the clothes that he brings in with him (almost like a Velcro paper doll clothing system). Staff would have to help him use it, debug it, etc. For instance, Scott starts the year with four polo shirts (so in picture representation, Velcro on back, 4 are on the inventory board'). He wears one, moves the shirt into the laundry basket' when it is dirty. He does laundry and as he removes the dried laundry from the basket, puts each pictured garment' back up. If he took two polo shirts home, the picture representation would be moved into the suitcase' and if they returned on Sunday with him, go back onto the inventory board. Yes, it would take adult monitoring, but be part of the sequence.
  4. Develop an afternoon/evening schedule for the dorm using pictures to examine if that helps him sequence the evening, remember to do things that do not- staff will have to role play it with Scott

Money-handling:

  1. Scott needs to have his wallet firmly secured/attached to the inside of his fanny pack. The Pullmans may want to consider writing a check to the primary dorm person who would cash it and have a bank account' for Scott. Prior to his going to bed, Scott could withdraw' from the bank' what, if any money, he would need for the next day. Staff would observe Scott putting it immediately into his wallet, fanny pack securely shut before he walks off. He is not to borrow from staff or classmates. All staff should be given the script of Scott's money handling program as it is developed; data can be collected, with spot checks re: whether all is accounted for, whether it is in clothes, flat in his wallet or folded and stuffed wherever, etc. After this is successful for at least 3 months, then look where to add independence. Should periodic spot checks reveal that Scott has started slipping' re: the money handling program, then the program would be reinstated.

Books on Tape:

  1. The IEP team discussed a program whereby Scott can order books on tape, but they would come to the classroom teacher. Since several books often arrive at one time the teacher would record what was received and give Scott the option of whichever book he wanted to take and listen to. It would be Scott's responsibility to listen to the book on tape, rewind all the tapes when completed, and return it to the teacher in rewound condition at which point he could be issued another book on tape. No more than two books on tape should be in his possession at any time.

SOCIAL SKILLS:

  1. Scott will benefit from specific work in the area of social skills. This is better done in a social rules format' and maybe a skill of the month/skill of the week' that many could reinforce if alerted to what he is concentrating on. Making sure that all adults have copies of the rules that he is being taught to use, the script used to cue him, etc. A brief assessment of his baseline social skills using a criterion referenced type checklist available in many social skills curricula would be helpful.
  2. We need to go beyond the verbal, explaining mode with him and be very specific. Saying he has problems with boundaries is not enough. Boundaries are defined by: appropriateness of physical distance, physical contact, topics of conversation that are within and off limits, etc. Define what is OK and not OK for him to do.
  3. Recognize that social situations, particularly with peers, are difficult and have not been successful in the past. Adults will have to identify what Scott is comfortable with as well as what within that setting or social interaction works; and what/where things are difficult (e.g., YMCA, church youth group). Scott likes computer games - is that a place to begin? Would having someone over for a Star Trek marathon and sharing pizza or other snack food be a starting point (e.g., low social interaction demand, shared time)?
  4. Before taking Scott into new social situations, be sure to provide him with information about the setting, the types of behavior that is acceptable, what he can do if he gets distressed, rehearsals/dry runs re: skills he may have to use.
  5. Scott takes the feedback well, and often responds with an apology, but would also benefit from social rules that all involved with him reinforce ('rule of the month').
  6. Consider using situations that are difficult for Scott, develop a script, repeated chances to practice before having to implement the skill in public, etc. The Orientation and Mobility staff of MSB has done a wonderful job using this approach with Scott and has even identified ways to help keep track of the materials used.
  7. Help Scott learn (in vivo) that there are different levels of relationships and skills and behaviors associated with them.

SOCIAL/EMOTIONAL

  1. Recognize that Scott can become overwhelmed by any change (and experience them with the same level of distress be it a staff member was minutes late for an appointment, the fact that someone mentions placement change' which we can defer thinking about but he cannot, to the loss of a loved one). Try to alert him in advance of changes in his schedule.
  2. Minimize the number of transitions (within and across settings) that Scott has.
  3. Scott does not like surprises' - when meetings will involve hot topics (or an outing or trip may be stressful either because of lack of prior experience or because of past associations or experiences) it helps to do a preliminary meeting with him to review what will be discussed so he has ample time to process, can get his initial questions addressed in private (without having multiple adults and other sensory distractions interfere). Similarly, outlining what to expect on a trip or outing, identify ways to cope, etc. is helpful. If available, a videotape will concretize what he might expect.
  4. Should Scott be "surprised" by something or very distressed as indicated by his agitated state or limited ability to focus, find out what has upset him and tell him you can answer one question now and the rest he can get answered at _____ today (or whenever). Even if he feels he has "too many questions and not enough time" when asked to pick his "top three" only 1-2 may come up and he regains his composure, is relieved and is now free to attend to instruction. Additionally, adults can help him restructure his day and get back 'on track.'
  5. Recognize that Scott bases future encounters with the same setting or person on his past experiences, successes, stressors, etc.
  6. Discuss with Dr. B whether it is worth a trial of an anti-anxiety medication (much will depend on whether or not Scott is experiencing seizures at this time)
  7. This recommendation cuts across ALL domains: When trying to motivate Scott to participate in something that is hard for him, use his peak interests and apply them in realistic situations. Children are more likely to attempt, understand and retain skills if they are attached/integrated into key interests. Scott loves star trek, horseback riding, history, etc.
  8. Scott would benefit from developing coping skills as well as having staff address a situation that derails him. For instance, on a number of occasions during the testing and between sessions, he appeared at my door upset about something. Asking about his 'top most concern,' addressing it and helping him restructure his day was all that was needed. For more recurrent issues consider using social stories that are developed/written specifically for Scott (see Social Stories book by Carol Gray).

COMMUNICATION

  1. Keep it simple, keep it specific, keep it short - give directions within his memory capacities, pause to allow him to process the information.
  2. Avoid open ended questions.
  3. Consider using advanced organizers' so he can anticipate what the class, book on tape, etc. will be about and gear his listening/attention accordingly (e.g., "there are three important.;" "this chapter is about___ and the four reasons why").
  4. Encourage Scott's using the talking calculator so he gets auditory feedback
  5. Encourage his using the Reading Edge and other technologies that are reinforcing, help him access his information in both meaningful and independent ways, and are built into his schedule/are prompted by his schedule. Why build them in if he knows how to use them? Folks with executive functioning deficits do not know when to apply what they know, how to apply them to a new situation, what parts to apply, etc.
  6. Keep environmental distractions to a minimum
  7. Role play (e.g., phone skills, greetings)
  8. Letter writing and functional life skills - how to address what he needs to function in community? Scott can read his own writing and short passages: what is reasonable to expect of him? How will the team accommodate to the fact that he cannot read well?
  9. Examine what computer programs he can use most effectively to access email, access the Web; how he can write letters (e.g., voice recognition?), etc. Recognize that while he may know the programs, he needs staff to deliberately put them into his routine, provide structures that enable him to use them when and where he needs to use them.

CLASSROOM MANAGEMENT

  1. Preferential seating, away from distractions
  2. Access to the Reading Edge if given free time in class
  3. Alternative projects (roving reporter')
  4. Use his interests to work on his skills
  5. Use advanced organizers, simplify language, allow time for Scott to process
  6. Begin with skills that you already knows he hasor in settings that you already know he is familiar with
  7. Unless absolutely necessary do not have Scott transport things he does not need to transport - If he is not using books, can they be left in the classroom vs. his locker?
  8. Test out whether Scott can benefit/learn skills/increase understanding through the use of videotapes? From parent report, he was able to glean a lot from a nature program on a national park, moreso than actually being at the park. Why? It was viewed in the safety of a familiar environment, provided key information in a multimedia format, no reading/writing required; the park - new environment, not an interest of Scott's (like history is), hard to pick out what the attend to (given visual handicap as well as visual perceptual motor and organizational demands)

VOCATIONAL

Examine the goodness of fit between the demands of an activity and Scott's skills (e.g., vocabulary, things learned via videotape program format; stationary, simple one to two step repetitive non-verbal activities which do not his moving across a room/across settings) and deficits (e.g., problems sequencing, knowing where to begin and end; right/left confusion; number/time/amount; no ability to independently organize his space or activity; problem solving; motor planning; auditory distractibility). This is accomplished by doing a thorough assessment of the skills required and demands of the task (conduct thorough task analysis) and the setting; then structuring the activity so that it is foolproof and that Scott already has the skills or can be taught the skills within a familiar setting before applying them to a new environment, then re-evaluating and restructuring as needed. Using the current work situation - it is not that he's had enough time at Blockbuster and that is why things are going better, but rather that instead of him multi-tasking, moving around the store (visually and spatially confusing even for the non-learning disabled; and auditorally distracting with videos running) he is stationary and doing repetitive/one or two step tasks (e.g., labels on, in the same spot, and put tape in box).


Below are some sample resources (not exhaustive by any means, mostly focused on Asperger's vs. autism)

WEBSITES:

http://www.tsbvi.edu - If you go to the multi-handicapped section you can access handouts we used at our AER talks in June, 2000.

http://www.unc.edu/depts/teacch/teacch.htm - There is a tremendous amount of information on the TEACCH website  the Aspergers' specific material is listed below. In addition, you might want to look at the Yale Child Development website as Ami Klin and Fred Volkmar have some downloadable handouts as well. TEACCH's downloadable related information is listed below.

  • Recommendations For Students with High Functioning Autism by Kerry Hogan
  • Tips For Teaching High Functioning People With Autism by Susan Moreno and Carol O'Neal
  • Understanding the Student With Asperger's Syndrome: Guidelines for Teachers by Karen Williams

http://www.udel.edu/bkirby/asperger/index.html - another good source for information on Aspergers

http://www.asperger.org/ - good articles; current conference listings

Sample Reading List:

Gray, C. Social Stories. note: there are several volumes available.

Smith-Myles, B. & Simpson, R.L. (1998). Asperger Syndrome: A Guide for Educators and Parents

Return to A Process for Identifying Students Who May Be At-Risk for Deafblindness
Download MS-Word version (36k)

As a teacher of the deaf and hard of hearing, you are aware of the importance of vision for the child with a hearing impairment or deafness. Here are some things that you should investigate through parent and staff interviews and/or the student's records. (Adapted from the Deafblind Census of Texas Checklist)

  1. Does the student have a documented visual impairment meeting Texas eligibility requirements as cited in the Commissioner's Rules?
  2. Does the student have a vision loss in one eye only?
  3. Does the student have a documented syndrome, disease or disorder associated with vision loss?
    • Congenital Rubella Syndrome
    • CHARGE
    • Down Syndrome
    • Cerebral Palsy
    • Prematurity
    • Meningitis
    • Congenital cataracts
    • Prematurity
    • Hydrocephaly
  4. Does the student have a documented syndrome/disorder associated with a progressive vision loss?
    • Usher Syndrome
    • Leber's Congenital Amaurosis
    • Hurler's Syndrome
    • Glaucoma
  5. Does the student have a diagnosis of cortical visual impairment, which results in difficulties in processing visual information, from an ophthalmologist and/or neurologist?
  6. Does the student have a documented visual impairment of 20/70 or greater after correction in better eye or a loss in visual field?
  7. Is the student at risk for vision loss? Factors to alert to include:
    • Diagnosis of nystagmus (an involuntary rapid movement of the eye)
    • Diagnosis of untreated amblyopia (uncorrectable blurred vision due to disuse of the eye) after the age of 6 years?
    • History of untreated eye condition, such as cataracts (a clouding of the lens of the eye), during the first three years of life
    • Impaired occulomotor functioning resulting from strabismus (a deviation of the eyes so they are not simultaneously directed to the same object) or cerebral palsy or other neurological impairments
    • Prematurity
    • Caregivers/professionals who know the child suspect visual impairments because visual attending and/or visual examining behaviors are less than anticipated
    • Family history of vision loss
    • Childhood injuries especially blows to the head
    • Craniofacial anomalies
    • Drug or alcohol abuse of parent during pregnancy
    • Low birth weight

ABC CHECKLIST FOR VISION OBSERVATION AND HISTORY

It's as simple as A, B, C!

There are three common areas to look for when determining whether a child has a vision problem. A simple A, B, C Checklist can help you along the way! Your job is to be a good observer of the child's eyes and activities. If you have any questions about the vision of a child, please talk to a teacher, a school nurse, or a doctor. Many vision problems can be corrected, if caught early. Be a vision detective and identify vision problems early!

A = APPEARANCE

Do eyes look normal?

  • Eyes turn in or out
  • Crusty or red eyelids
  • Different size pupils or eyes
  • Swelling of eyelids
  • Conjunctivitis (Pink eye)
  • Drooping lid(s)
  • Any other observation about "eyes that just don't "look right"?

B = BEHAVIOR

Teacher/Parent Observation

  • *Tilts head, covers or closes one eyes for critical seeing
  • Difficulty in keeping place while reading -a "finger" reader
  • Disinterested in activities involving critical seeing
  • *Excessive stumbling, awkwardness or daydreaming
  • *Holds printed material in unusual position
  • *Has (reported) difficulty seeing at night or in the dark.
  • Other behaviors the child does that seem to indicate vision problems.

C = COMPLAINTS

Child's Statements or Your Observations that the Child Might be Experiencing Discomfort During Visual Tasks

  • Eyes hurt or blur while reading
  • Headaches when reading
  • Words move or jump about when reading
  • Double vision
  • Eye problem following a blow to the head
  • Cannot see the chalkboard
  • *Cannot see well at night or in dark situations
  • *Eyes hurt or bother child when in bright lighting
  • Other complaints or observations that might mean a child is experiencing discomfort during visual tasks

*Underlined items may be an indication of problems with field loss.

Reprinted from Vibrations Newsletter of Colorado Services for Children who are Deafblind, Winter 2000 Edition with adaptations by Region 12 Deafblind Stakeholder Committee.

 

by Millie Smith, Educational Specialist, TSBVI VI Outreach

In the last five years I have been working with staff and families to support their efforts to team more effectively using the transdisciplinary model. I have not seen or created any perfect transdisciplinary teams during that time. I have seen staff and parents use bits and pieces of the model very effectively to improve programs for students. I am more convinced than ever that transdisciplinary teaming is the best of the service delivery models available to us at the present time. I am equally convinced that the best chance we have of increasing its use is to assure staff and parents that partial implementation is not only realistic, but probably as effective as a more idealistic whole cloth application. The product may be a patchwork conglomeration of pieces supplied by different people at different times, but a coat nevertheless.

The most powerful aspect of the transdisciplinary model, in my opinion, is its emphasis on plugging the expertise of specialists into the day-to-day instruction of students with severe multiple impairments. In this model specialists work in classrooms. They may provide direct instruction or therapy to the student during a regular activity or they may model, coach, and monitor interventions implemented by others. Often they do a combination of both.

Another powerful aspect of the model is that, whenever possible, specialists, instructors, and family members collaborate by meeting together to design instructional activities. More often, they collaborate by leaving each other notes, sharing video tapes, and calling each other on the phone. By collaborating, an effort is made to provide as much consistency in programming as possible across settings and people.

The best approach for implementing transdisciplinary teaming strategies may be to treat the total model like a menu of options. Teams can choose to concentrate their efforts on assessment, IEP development, or instruction. They can do some transdisciplinary work in each category without doing everything that category offers. In order to make informed decisions about where to concentrate efforts, a global understanding of the model is helpful.

Why is transdisciplinary teaming important?

Students with severe impairments receive instruction and services from a variety of different people. Instructors include teachers, teaching assistants, and family members. Special services may include speech, occupational therapy, physical therapy, vision, hearing, and others. Teaming allows specialists, teachers, and families to work together to teach skills in natural contexts where there is more opportunity for frequent practice.

Many specialists have changed the way they serve students with severe impairments in the last ten years. The professional organizations to which most specialists belong have endorsed a service delivery model that emphasizes integration of special services. Integration of special services benefits students with severe impairments in two ways: skills are worked on in natural contexts so that students don't have to try to generalize skills learned in a special setting, and skills are worked on every time the opportunity occurs, whether the specialist is present or not, so that practice is frequent.

In an integrated service delivery model, specialists assess needs, do diagnostic teaching to try out techniques and strategies, model techniques and strategies for other staff and family members, and monitor effectiveness and progress. When the integrated model is transdisciplinary, information is shared among specialists, instructors, and family members. This type of service is intense and dynamic, and highly effective.

How can specialists provide natural contexts and frequent practice?

The traditional service delivery choice for specialists has been direct or consult. For students with severe impairments a wider range of choices is necessary.

 AdvantagesDisadvantages
Direct Pull-out Always one-to-one. Special equipment. Infrequent practice. Context not natural.
Integrated Direct One-to-one or small group. Natural context. Infrequent practice.
Traditional Consult General information shared. Contact very limited
Collaborative Consult Specific information shared with team. Accountability  tied to progress in instructional activities. Requires more time.

Each of these models has a place in transdisciplinary teaming. For instance, direct pull-out may be appropriate for post trauma students or for a student learning a new communication device. Usually, this service is provided for as short a time as possible and a very structured transition period follows pull-out in order to transfer skills to natural contexts. That transition period might be integrated direct service. Integrated direct service is often used by speech/language pathologists teaching communication skills in natural contexts and by OT's and PT's teaching motor skills in natural contexts. Consult is usually provided in conjunction with direct service. Sometimes consult is the only service provided.

What type of consultation tends to be most effective?

Most consultation is general. Specialists write recommendations in their assessment reports. When specialists consult with teachers, they talk to them about their recommendations. Information is shared at a general level. For example: "This student has CVI. Most CVI students like the color red. If you want the student to look at something, try using red. Moving the object slightly in the peripheral field might also help."

Many teachers will remember the student might like red and they will probably make an attempt to select red materials when they can. When the VI teacher checks back with the teacher after this kind of consult, she may hear something like, "Well, I don't notice that red really makes that much difference."

Specific consultation tends to be more effective. In this type of consultation the specialist assesses, recommends, demonstrates in a natural context, and evaluates results. For example: "This student has CVI. CVI students tend to like red. Let's use a red scoop dish at mealtime instead of the cream colored cafeteria tray. If he can see the bowl, it may be easier to get him to scoop. We may need to position the bowl slightly to the left and move it a little at first. When he looks at the bowl, we'll give him a touch prompt to move his hand to the bowl. I'd like to come in at lunch time and try this a few times. Let's keep data on this for two weeks and see if there are more independent attempts to scoop. We may need to do something with the spoon as well."

Traditional consult by itself puts a very heavy burden on classroom teachers and family members to come up with activities and specific modifications for students with extremely intense needs. Transdisciplinary teams use a more dynamic kind of consultation. When consultation is specific and collaborative, it is a highly effective type of service. It also requires more time than traditional consultation. Students with severe multiple impairments tend to be chronically underserved. The average amount of service in Texas for traditional consult appears to me to be about thirty minutes a month. In many places it is less. A more reasonable average for collaborative consultation would be between two and four hours a month. Time demands are more intense when a team is starting a new program. Once the program is established, less time is needed for monitoring and maintenance.

What are the components of transdisciplinary teaming?

Collaborative Assessment

Collaborative assessment occurs when team members identify strengths and needs through shared observations and discussion. One type of collaborative assessment is an arena assessment. Team members meet together to observe a child as one team member (frequently the parent) interacts with the child. Collaborative assessment can also occur during team meetings designed to share and interpret information gathered by individual team members in one-on-one assessments with the child.

Integrated IEP

A team IEP is a document containing goals and objectives developed collaboratively by all team members. Based on family priorities, the group establishes an integrated set of goals (four to six) and two to three objectives per goal (eight to twelve objectives total for the IEP). If an objective relates to a particular related service, that related service provider is identified as responsible for insuring that instruction addressing the objective is implemented and that documentation is collected.

Natural and Frequent Instruction

IEP goals and objectives are taught in activities which occur naturally and frequently at home, in school, and in the community. A team member, usually a classroom teacher, parent, or teaching assistant, is identified as the direct implementor of instruction for a specified activity which may have several IEP objectives imbedded in it. The related service team member responsible for developing a given IEP objective either integrates direct service or consults with the direct implementor of instruction.

Role Release

Team members share knowledge and skills in their particular areas of expertise by role releasing. This is a systematic process whereby one team member trains another to use specific procedures and techniques. The team member who has received this training may then implement a procedure or technique in a given activity when the trainer is not present. The person with specific knowledge is responsible for ensuring that these procedures and techniques are used effectively and appropriately with a given child.  

Documentation

Information is gathered for the purpose of evaluating and refining instruction, reporting student progress on objectives, and sharing information with families and team members.

What assessments are important and how does the team use them?

Students with severe impairments are sensory-motor learners. Assessments of sensory and motor skills are extremely important. Cognition and communication are also important areas. Information about skills in each of these areas may be obtained by specialists in their individual assessments done as part of the Comprehensive Individualized Assessment. Assessment of biobehavioral states of arousal may be very helpful for students with the most profound impairments.

In transdisciplinary teams, specialists collaborate to plan their assessments, to carry out their assessments, and to interpret their assessments. Sometimes arena assessments are done. In this type assessment, one person interacts with the student while other team members observe and ask questions guided by the use of protocols specific to their disciplines. The advantage to this assessment approach is that the student interacts with the persons most familiar with him or her. Performance is likely to be more typical under these conditions. The disadvantage to this approach is that, although total assessment time tends to be less overall, assembling all team members in the same place at the same time can be difficult.

After teams assess, they must share information and come up with program priorities. Instruction is sometimes ineffective for students with severe impairments because too many needs are addressed. Instruction is much more effective if instruction is very focused on four or five priorities. These priorities become goals. Specific needs in each goal area are then identified. These become objectives.

What should a good transdisciplinary IEP contain?

Goal

The team uses assessments to select four to six priorities for the school year. Each of these becomes an annual goal. Some teams write very broad goals; some write more specific goals. Each annual goal should be a statement of what the team believes the child can accomplish within a school year. A broad goal would be: "Student will improve his expressive and receptive communication skills." A more specific annual goal would be: "Student will use ten expressive signs in appropriate contexts." Specific goals work best for students with severe impairments.

Objectives

Objectives are the steps between the child's current level of performance and the annual goal. They state one specific task the child will do, at what level, by when, and what criteria will be used to measure progress. For a broad goal, the team might write: "Student will use five expressive signs during meal time and snacks, independently, eighty percent of the time, measured by teacher observation." For a more specific goal, the team might write: "Student will use name sign to greet nurse when he gets meds, independently, eighty percent of the time, measured by teacher observation." Specific objectives work best for students with severe impairments.

Skill

A skill is the behavior to be learned. The phrase following the word "will" in the objective is usually the skill. In a transdisciplinary IEP, specific discipline skills are imbedded in objectives. An objective might be that a student will assist during meals by opening his mouth for bites. The VI teacher might add that the student will open his mouth for bites when a brightly colored spoon is moved slightly in the right peripheral field of the right eye from a distance of six inches.

Activity

An activity is the context in which the skill will be used. The phrase following the word "during" in the objective is usually an activity. Teams include information about context in objectives to make measurement more meaningful.

Modifications

These are the techniques, technology, and strategies which are necessary to ensure the highest level of participation for the student in the activities of his school day. Federal law requires that these be specified in the IEP. Most school districts include a generic modification page in the ARD papers. Some of these may be useful, but teams have to come up with more specific modifications in order for progress on objectives to occur. A general modification for a special education student might be "shorten assignments." A specific modification for a student with severe impairments might be "use adapted spoon."

Some teams continue to write traditional IEP's in which each team member comes up with his or her own set of goals and objectives. Students with severe impairments can't usually learn as many things as team members can come up with to try to teach them. Also, when team members are trying to teach too many things, they tend to scatter their energy and not teach any one thing very intensely. Teams tend to be more accountable when they focus their attention by writing one collaborative IEP. In this approach special skills are integrated into short-term objectives.

Student: Catherine
Date Accepted by ARD Committee: 5/1/95
Annual Goal: Will improve functional use of objects*

Short-Term ObjectivesEval. Method
Observation Formal testing
Criteria
(Accuracy Level)
TargetedPresent  CompetenciesMet  Y/N
1. Will visually locate a desired object in an adapted environment during rec/leisure time.
Direct Implementor(s): Classroom Teacher/TA
Support Staff Responsible: VI Teacher
Begin Date: 8/95 End Date: 5/96
Observation Independent Frequent physical manipulation  
2. Will look at an object presented by a caregiver to request continuation of an activity during grooming activities.
Direct Implementor(s): Teaching Asst./Mother
Support Staff Responsible: VI Teacher
Begin Date: 8/95 End Date: 5/96
Observation 90% 20%  

* Sensory skills are integrated in short-term objects.

Sometimes a column for modifications is added. The example given in objective number one might include: Modifications: Den/Little Room

How is instruction provided in natural contexts by the whole team?

A routine is a teaching strategy that focuses the team's efforts on specific activities that occur with high frequency in the student's schedule. Routines are designed to teach specific special skills to students who require consistency and repetition in order to learn. As skills are learned, the student's level of participation in activities increases. Any activity can be developed into a routine when team members plan what they will teach and adapt for a given student. An activity is not a routine unless it meets the following criteria:

  • There is a clear signal to the student that the activity is starting.
  • The steps of the activity occur in the same sequence every time.
  • Each step is done in the same way each time (same materials, same person, same place).
  • Modifications and techniques provided by specialists are implemented exactly as directed.
  • The minimum amount of assistance is provided in order to allow students to do as much as they possibly can.
  • The pacing of instruction is precisely maintained until the activity is finished (no side conversations, going off to get something you forgot, or adding new or different steps that won't happen the next time the activity is done).
  • There is a clear signal to the student that the activity is finished.

Why are routines worth the trouble?

The power of a routine is the precise planning of what the student will do and how he will do it on each step of the routine. Many students are able to learn new skills and participate at higher levels when this strategy is used because they need the following things that routines provide:

  • Predictability: "I know what is going to happen from start to finish."
  • Consistency: "I know what I am supposed to do."
  • Anticipation: "When you do that, I know what to get ready for."
  • Practice: "I remember what I did last time and I can try to do more this time."

Students with severe impairments rarely do every step of a routine independently, but they are afforded the dignity of doing everything that they are cognitively and physically capable of doing.

What do routines look like?

Mealtime is a good activity to develop into a routine because it usually happens three times a day. Practice opportunities are frequent. The team's plan might look something like this:

  • 1. Get spoon from calendar box to begin activity.
    Target skill: Tactual exploration of objects in calendar to recognize spoon.
    Person responsible: VI teacher.
    Strategy: VI teacher demonstrates shadowing technique to TA to decrease student's aversion to hand over hand manipulation.
  • 2. Take spoon to eating area.
    Target skill: Maintain grasp, intentional release.
    Person responsible: OT
    Strategy: OT demonstrates use of "buncher" for grasp and pressure point technique for release to T.A. who will implement instruction.
  • 3. Give spoon to adult to request meal.
    Target skill: Use object to request.
    Person responsible: Speech/Language Pathologist (SLP)
    Strategy: SLP demonstrates touch cueing technique to TA who will implement instruction.
  • 4. Eat.
  • Target skill: Manipulate spoon for scooping.
    Person responsible: OT
    Strategy: OT provides adaptive equipment and demonstrates technique to TA who will implement instruction.
  • 5. Put spoon in washtub at dish window to end activity.
    Target skill: Maintain grasp, intentional placement.
    Person responsible: OT and VI teacher.
    Strategy: OT demonstrates arm support technique to TA who will implement instruction. VI teacher provides visual enhancement of target.

How do specialists help other team members address needs in their areas?

Transdisciplinary teams use a procedure called role release. Any team member having special skills may train any other team member needing those skills. The need for a team member to have certain skills is usually dictated by scheduling. Specialists cannot always be present when a skill needs to be taught in a natural context. Specialists have certain responsibilities. They cannot release their role to another until that person demonstrates that she can perform without prompts. The specialist must then monitor the activity to ensure that the released procedure is performed as taught.

The role release process usually consists of the following steps:

  • The specialist and other team members share information related to the need.
  • The specialist teaches the designated person(s) a specific procedure to address the need.
  • The specialist supervises the implementation of the procedure and makes adjustments as needed.

Communication among team members is essential in the role release process. Members must be able to ask questions, seek help, and respond quickly. Here are some tips for increasing and maintaining contact:

  • Schedule time to observe activities.
  • Review videotapes of activities between observations.
  • Attend team meetings.
  • Post notes to team members on a special bulletin board.
  • Keep documentation in an area where all team members can access it.
  • Keep a school/home notebook.

How do teams document student progress?

There are two things to remember about documentation:

  • It is important because team members have to know what's working and what isn't working.
    Students with severe impairments don't fail to make progress, but teams may fail to provide the necessary level of support in order for progress to occur.
  • It must be easy to gather so that it does not take time away from teaching and attention away from the student.

Different kinds of documentation are appropriate in different situations. Here are some common types:

  • Frequency Tally Method: A mark is entered each time the designated behavior occurs. The event may be a student behavior (signed "more") or the event may be a teacher behavior (touch prompt given).
  • Annotation: The teacher may write a comment describing the student's performance on a given trial.
  • Plus/Minus: The target skill occurred or did not occur.
  • Level of Prompt: A letter is entered to indicate the highest level of prompting given during the trial (hand-over-hand, touch prompt, verbal prompt, independent).

Be consistent. Decide which method fits best for a given situation and stick with that method. The whole team must use the same methods in the same situations.

Routine and data sheet sample.

An example of a routine with annotative documentation is included on page thirteen (Routine and Data Sheet). Notice that documentation is kept only if the step is one in which an IEP objective is addressed. If there is no number in the IEP column, no documentation is kept.

How do specialists document service time?

Parents typically do not demonstrate a high degree of confidence in consultative services. Some demand direct service because they fear that their children's needs will not be addressed adequately in a consultative model. This can be counterproductive for students with severe impairments who need frequent intervention in natural contexts. One way to assure parents and other team members that real help is being provided is to share documentation.

Most specialists are used to keeping records of some sort for their supervisors. These may consist of student contact logs or observation summary forms. An example of a contact sheet which emphasizes the team approach is shown on page fourteen (Sample of a Collaborative Service Delivery Contact Sheet).


Routine and Data Sheet
Student:
Catherine
Routine: Hair Care Time
Implementor: Classroom Teacher, TA
Time: 9:00 a.m.
Location: Classroom

Routine StepsAdaptation/ModificationIEP Comments/Data
1. Travel to hair drying area. Chair pushed to hair drying area. Looks at caregiver to signal readiness.    
2. Visually locate hair dryer. Caregiver wears dark-colored smock against which bright yellow hair dryer is held. Use object lighting, if necessary. #1 Looked at hair dryer on third  of three presentations after light enhancement provided.
3. Turn desired part of head/ face to airflow as caregiver holds dryer.      
4. Visually locate hair dryer each time care-giver turns it off to request continuation of activity. See #2 #1 Looked at hair dryer on second and fourth - presentations no light.
5. Visually locate hair-brush held by teacher. Caregiver holds bright red  hairbrush against smock. Use object lighting, if necessary. #1 Did not respond, four presenta tions with light (contrast may not be adequate, try different  colored brush.)
6. Cooperate while hair is brushed by caregiver.      
7. Travel to area of next activity. Looks at caregiver to signal  readiness for lift. Chair is pushed to next area.    

Documentation Date: 10/7/95 Documentor's Signature: (VI Teacher)


Sample of a Collaborative Service Delivery Contact Sheet

Student: Catherine
Service Provider: M. Smith, VI Teacher

DateTime InTime OutStaff PresentService Delivered
2/7 9:30  10:00 T. Johnson, Linda Evaluated visual responses (JVE)
2/11 2:00 2:30 Linda Evaluated visual responses (JVE)
2/18 3:00 3:30 T. Johnson, Linda & Parent Wrote activity routine
2/22 9:30 10:00 Linda Role release hair dryer procedure
3/12 9:30 10:00 Linda Observed & modified hair routine

Administrator's Signature: _______________________


Conclusion

Remember Joseph's coat. It was made a piece at a time. It might be a good idea to remember that Joseph probably wore some other garments as well. If your team ends up with a vest or a really good pair of socks, success is just as sweet. Good luck!

If you have questions or comments about this article you may contact Millie by phone at (512) 206-9270 or by mail at TSBVI Outreach, 1100 West 45th St., Austin, TX 78756 or by email at <>.

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Terese Pawletko, Ph.D. & Lorraine Rocissano, Ph.D.

July, 2000

NOTE: Autism is a syndrome comprised of a cluster of behaviors that must be present by the age of 3. Keep in mind, however, that children with autism will not remain static over time but will improve in many of these areas. They are still autistic. This illustrates the importance of doing good developmental histories. Educational classification may vary slightly by state; however, diagnostic criteria used by professionals outside of education rely on DSM or ICD systems. For purposes of this discussion we are referring to the totally blind child. Historically, many of the behaviors exhibited by blind children were labeled as "autistic-like" but were attributed to their blindness. We seek to clarify some of these misconceptions.

  1. Qualitative impairment in social interaction, as manifested by at least two of the following:
    1. 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

      Behaviors involving vision are not applicable when considering blind children, however, it is possible that blind children may indicate social interest through shifting body posture
    2. failure to develop peer relationships appropriate to developmental level
      • Blind/Non-Autistic
        • Relationships may be delayed but will develop.
        • Shows social curiosity (e.g., ask who is in the room, why a particular person isn't there).
        • Indicate that they enjoy social interaction as noted when they smile in response to hearing a friend is coming over.
      • BLIND/AUTISTIC
        • Peer relationships are non-existent or distorted (e.g., child may pull someone's hair in order to see him cry - like cause/effect toy).
        • Show little social curiosity or interest and in extreme cases may find social interaction aversive.
    3. 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)
      • Blind/Non-Autistic
        • Will seek to share information and experiences (even children with moderate to severe MR).
      • BLIND/AUTISTIC
        • No real social interest, no interest in sharing. Exception is high functioning child. Can share, but only on his/her preferred topic, and when older.

          * The criteria from the DSM-IV are provided to give professionals a consistent basis for determining diagnosis. However, these criteria alone are not sufficient for diagnosis. The practitioner uses a broad range of information and clinical experience to determine the presence of an autistic spectrum disorder. Likewise, autism checklists have limited usefulness and should not be the basis for diagnosing autistic spectrum disorder.
    4. lack of social or emotional reciprocity
      • Blind/Non-Autistic
        • Can demonstrate empathy toward others (e.g., feel badly if hurts someone).
        • Can engage in socially appropriate give and take.
      • BLIND-AUTISTIC
        • Seems to treat others as object.
        • Does not seem to understand social given and take.
  2. Qualitative impairments in communication as manifested by at least one of the following:
    1. 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 gesture or mime)
      • Blind/Non-Autistic
        • Will develop language. If MR may be delayed but will make efforts to communicate and exhibit pleasure in social exchanges.
      • BLIND-AUTISTIC
        • Language may not develop at all.
        • If there is language it is usually echolalic.
        • Shows no interest in communicating.
    2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      • Blind/Non-Autistic
        • Conversational skills develop within normal range.
      • BLIND/AUTISTIC
        • Little or no conversational reciprocity.
        • If higher functioning, may converse but primarily on a topic of perseverative interest (e.g., commodes)
    3. stereotyped and repetitive use of language or idiosyncratic language
      • Blind/Non-Autistic
        • May have pronomial reversals (like some sighted children),but brief in duration. Otherwise, language develops in ways similar to that of sighted children (Landau, 1997).
      • BLIND/AUTISTIC
        • Extended period of pronomial reversal.
        • Echolalia
        • Pragmatic inappropriateness - may respond with something irrelevant to what was just said; says wrong thing at wrong time.
    4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
      • Blind/Non-Autistic
        • Imitative play and make-believe play are compromised at early ages due to lack of vision. However, as children gets older, they do begin to engage in role play with others.
        • Play with objects is appropriate (e.g., rolls and creates engine noises for truck, cuddles doll).
      • Blind/Autistic
        • Generally do not play appropriately with materials (e.g., may spin truck wheels, twirl string; engages in more repetitive actions instead of purposeful actions on objects).
  3. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
    1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      • Blind/Non-Autistic
        • Blind child's interests can be expected to be restricted compared to the sighted child due to lack of vision.
        • However, the blind child can, relatively easily, be engaged in a variety of activities by an interested adult. 
      • Blind/Autistic
        • Highly restricted interests; may be willing to engage in only one or two activities (e.g, a specific "Price is Right" episode, spinning wheels on truck, flicking giant Lego block repetitively).
        • Very difficult for interested adult to engage child in different activities.
        • Interruption of favorite activity is often met with extreme resistance.
    2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      • Blind/Non-Autistic
        • Shows normal flexibility in normal life events.
      • Blind/Autistic
        • Rigid performance of routines that don't have a function is common.
        • Inflexibility is most evident during transitions or when a routine is changed.
    3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      • Blind/Non-Autistic
        • May rock or eye-poke, but this can usually be redirected. 
        • Child can develop control over these as he gets older.
        • Handflapping, spinning not commonly seen.
      • Blind/Autistic
        • May exhibit a number of motor behaviors - e.g., head roll, hand flapping; rocking one foot to another, etc. These behaviors are very resistant to interruption.
    4. persistent preoccupation with parts of objects
      • Blind/Non-Autistic
        • Preoccupation with parts of objects not characteristic of blind children.
        • Objects, with appropriate instructions are typically used functionally.
      • Blind/Autistic
        • Insist on fiddling with one part of an object or one type of object.
        • Very resistant to interruption or redirection.

Terese Pawletko, Ph.D.

AER International Conference July 17-21, 2002 Toronto, Ontario

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

Table 3.2 Student Learning Traits Assessment (from Brenda Smith-Myles Book)

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:

email:  

Snail mail:

Terese Pawletko, Ph.D.
22 Wildlife Drive, Eliot, Maine  03903
Phone:  (603) 396-1645


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.

CVI 

Autism and Blindness

I hope these are a help .... I do have a lot more but thought I would just give a few of the ones I have accumulated through my on line ever searching research so if more are required please let me know

Julie in Australia

AER/Denver - July, 2000

Mary Morse, Ph.D.
Special Education Consultant
247 Pembroke Hill Road Pembroke, NH 03275
Phone (603) 485-7674
Fax (603) 485-1958

A REMINDER

WE, THE SERVICE PROVIDERS, ALWAYS NEED TO BE PREPARED TO JUSTIFY WHAT WE DO TODAY IN THE EVENT OUR STUDENT(S) COME BACK IN TWENTY YEARS AND ASK US WHY WE CHOSE A PARTICULAR COURSE OF ACTION.

TEACHING CONSIDERATIONS

PHYSICAL CONSIDERATIONS

  • Consider the child's health, stamina, ability to manage sensory-motor demands, levels of arousal, communicative status, etc.
  • Organize the environment-at-large physically & sensorially
  • Organize the near work environment for each activity

INSTRUCTIONAL CONSIDERATIONS

  • Develop a Meaningful Curriculum
    1. Are the goals & objectives functional for the student?
    2. Will the tasks be rewarding enough to encourage the student's active participation?
    3. What aspects of the activities will be especially difficult for the student?
    4. What adaptations or support will be necessary to help the student be successful?
    5. Is the manner of presentation CLEAR to the students from his/her perspective?
    6. Is the curriculum justifiable?
  • Implement the Curriculum:
    1. Determine priority environments. **
    2. Within priority environments, determine priority activities. **
    3. Within priority activities in priority environments, determine priority events. **
  • Using Successful Teaching Techniques:
    • Emphasis on associations
    • Greeting and departure ceremonies
    • Object communication &/or Object-symbol communication
    • Personal objects of reference
    • Gradual transition from three dimensional to two dimensional
    • Schedule system & Sub-schedule Systems
    • Scripting words, phrases, signs/gestures & motor actions
    • Grounding and use of surfaces
    • Activity sequence set-ups
    • Motor friendly- materials
    • Visual and/or physical accessibility of materials
    • Concepts of "saliency", "pausing", rhythm, and "dramatic hands"
    • Hand-under-hand vs. Hand-over-hand
    • Tangible counters and timers
    • Use of natural packaging as teaching tools
    • Natural opportunities for problem solving
    • Principles of orientation & mobility
    • Thematic learning experiences
    • Use of journals

SOCIAL CONSIDERATIONS: A RELATIONSHIP OF EQUALS

  • Promote equality through active contribution
  • Promote equality through increased self-help skills
  • Promote equality through active experiences
  • Promote equality through INTER-active communication

** Rainforth, B., York, J. & Macdonalt, C. Collaborative Teams for Students with Severe Disabilities. Baltimore, MD: Brookes Publishing Co. 1992.