Encounters with Dave

OT’s role with the Autistic Adult—

Susan N. Schriber Orloff, OTR/L

I frequent my local Office Depot often. Dave works there, and over time I have gotten to know him fairly well.  He is an expert in all things electronic. To ask Dave a question is to expect a very long detailed response. It is almost impossible to interrupt him once he starts his explanations and takes offense if you do. 

Ritualistic and unfailingly consistent in all his behaviors, Dave is tolerated by his co-workers, but is never seen in casual conversation.  When not with a customer, Dave is known to spend his time dusting and caring for the equipment in his department.  In one of our conversations, Dave asked me what I did and when I told him, he shared that he “used to be autistic, but now he was cured”.  All of sudden, everything seemed to make sense.

As OT’s we see a lot of autistic children, but what happens when these kids grow up? At least by my observation, aside from low wage jobs in grocery stores, autistic adults almost seem absent from usual daily encounters.  So when Dave shared with me this very personal piece of information, I began to investigate services for autistic adults in my community.  Sadly, there seemed to be very few choices compared to the opportunities for individuals in the 18 months to 22 years.  It seems that when public school services end so do the opportunities. 

There are private post secondary schools, but many of these are expensive making participation not a viable option for many families particularly in this economy.  Vocational training centers seem to be even scarcer.

This is not to discount the existing day programs, the independent living options or state vocational centers. But often these resources come with long waiting lists and in many cases are significantly under-funded.

What does all this mean and what is the impact on occupational therapy within the role of services for the autistic adult?  I propose that OT be an integral part of the high school curriculum for autistic children in grades 9-12.  And that the services include but not be limited to testing for community skills, vocational training, community “fieldwork employment”, and supervised simulated independent living skills. 

The impact of not being proactive with these emerging adults has multiple negative consequences not only for families but the greater community as well. Children generally outlive their parents, so without good community living resources many of these adults find themselves (if lucky) being cared for by siblings or extended family, but in some cases, homeless.  Living “unprotected” carries with it the potential for becoming easy prey and possible involvement in drugs, crime, etc.

Dave appears to be one of the lucky adults on the spectrum.  Employed by a major retailer who obviously knows both his strengths and limitations.  We need to educate the community in order to create more opportunities that promote independence and dignity for the autistic adult.

Occupational therapy has its roots in what historically is known as “Curative Workshops”. Maybe it is time to remake that concept updated for the 21^st century providing services for all autistic individuals—children and adults.

XXX Syndrome: early learning and sensory developmental implications

This rare but potentially devastating condition affects girls born to older mothers.  And as we as OT’s working in schools and preschools have already observed, many of our “first time moms” are often in their late thirties and early forties.

It is not a given that all older moms give birth to children with issues.  But in the case of XXX Syndrome that is one of the prominent factors.  XXX Syndrome is characterized by the presence of an additional X chromosome in each cell of female children/fetus.  If the extra X chromosome occurs only in some of the cells it is called a mosaic, and has less developmental impact.  It is not an inherited condition and usually occurs during conception and is related to a delayed or incomplete splitting of the egg during fertilization.  Occurrence is about 1 in 1,000.

XXX Syndrome can be mild to severe in its developmental impact. These children are often very tall, have vertical skin folds in the corners of their eyes, delayed motor skills, speech and language difficulties and various associated learning disabilities.  Other issues include social skill issues, self-esteem and related personality and psychological issues.

In preschool, these little girls “look” like their peers but just seem a “bit off”.  Following directions, engaging in-group tasks, frustration with following verbal directions and creative activities are often difficult for these children. In addition these children are often very dependent upon the teacher or authority figure for guidance and demonstrate little independent initiative.  It is as if, at a very early age they have learned that they cannot “go it alone”.  Behaviors are often unpredictable with the exhibition of task aversion in one situation and the ready engagement in another.

To better understand the profile of a XXX little girl, the following excerpt from an assessment is provided.  The name and identifying information has been removed.  This little girl was about 5 years old. She had a tested functional IQ of 130.  Treatment goals and summary are included to help give a template of potential treatment planning.  It is extremely important to be sensitive to the parents in these situations.  “Jane’s” mother blamed herself for “waiting” to have a baby and said that it was “her egg” that caused the “problem”.  Helping parents see function not dysfunction and encouraging them to seek counseling can be as much a part of your occupational therapy treatment as the actual interventions with the child.  In addition, it is important to stress to the parents that these children will not “outgrow” these concerns.  They may “morph” into other actions/behaviors, but they do not self-resolve.  Therefore stressing the importance of early intervention and that this is not a “quick fix” should be discussed at the onset of treatment.

                 Summary of Functional Responses

                       Scored as strengths, emerging (present but not fully developed) and a concern

                            Strengths

·                 Galloping

·                 Imitating basic one-sided postures

·                 Dominance on right

·                 Hop one foot and two feet

·                 Balance on left foot eyes open (stronger than on right)

·                 Stack blocks to 10

·                 Scissor use

·                 Jumping forward

·                 Ability to sustain self in task with supports

·                 Knew colors

·                 Knew shapes

·                 Heel toe walking forward

·                 Able to connect dots

·                 Tracing

·                 Able to respond positively to structure

·                 Could state opposites

                           Emerging

·      Catching a ball

·      Jumping backward

·      Write name

·      Right/left awareness

·      Copy skills

·      In-hand manipulation

·      Block designs to 3

·      Making choices

·      Awareness of 2-deminsional boundaries

·      Draw a person

                       Concerns

·      Skipping

·      Heel toe walking backward unassisted

·      Crossing midline of body with opposite side

·      Figure ground discrimination issues

·      Part-whole perception

·      Perceptual constancy

·      Spatial organization

·      Emotional stability reactions in unfamiliar tasks

·      Using both side of the body during a task

·      Grasp

·      Fear of failure

·      Targeting with a ball

·      No nystagmus

·      Places elbows into side of body for stabilization

·      Pencil/crayon control

·      Visual scanning

·      Task initiation

Classroom suggestions

1.                                    Pair verbal directions with visual demonstrations; possibly have Jane assist when providing the class with a demonstration for an activity.

2.                                    Ask her to repeat (and partially demonstrate) directions to assure understanding.

3.                                    Minimize visual/auditory distractions as much as possible.

4.                                    Encourage correct posture for deskwork (left hand stabilizing paper, appropriate pencil grasp).

5.                                    Encourage Jane to participate in activities to build muscle tone and motor planning such as; performing different yoga positions.

6.                                    Allow Jane to keep her hands busy with a fidget toy or squishy ball.

7.                                    Allow Jane extra time to complete activities.

8.                                    Encourage visual tracking skills by highlighting choices on activities.

9.                                    Encourage and/or allow her to go first when performing group gross motor activities to encourage initiation with task.

10.   With tasks that she knows how to do such as putting on her shoes, do not assist her—encourage independence in self-cares and known tasks.

                Summary

             Jane presented as a bright, timid young girl who found it difficult to separate from her mother, however shortly after she entered the testing area she “warmed up” to the OTR. Maximum encouragement was required from OTR to encourage participation in testing.

Present performances seemed to be negatively impacted by her visual perceptual, visual motor skills, and low tone.

                   During testing, Jane had a difficult time performing fine motor and visual perceptual- motor activities as noted by her inability to cross midline and visual track the items viewed. She showed the ability to identify shapes but was unable to reproduce the images onto paper. When faced with familiar and unfamiliar challenges such as copying pictures or identifying appropriate choices, she immediately became fearful of the challenges and broke down and started crying. Her reactions outlined the characteristic of a child that is having difficulty with translating visual information into appropriate motor responses; this is another common characteristic of Dysgraphia.

Jane became extremely frustrated by her lack of performance as demonstrated through her slow initiation and response to tasks. Maximum encouragement, visual and verbal prompting was required by the OTR, however it was noted that she 90% of the time only accurately responded and participated when visual cues were provided. This was the same behavior observed within her classroom when noted that she did not perform the drawing activity when auditory directions were given, instead she performed after she looked at the images drawn by her classmates.

Many of the sensory motor issues such as low functioning tone and no nystagmus response as noted during Jane’s evaluation, stems from her sensory system not receiving the appropriate feedback in order to organize the incoming information needed to produce functional movements. These issues can be related to a known disorder commonly known as Sensory Processing Disorder (SPD). Children often unknowingly seek out other ways to receive the sensory input that is missing. In Jane’s case, these issues are affecting her ability to perform age appropriate tasks, therefore causing her extreme anxiety and frustration.

                 Jane is a great candidate for being able to benefit from occupational therapy interventions.  She is very bright, and when supported,  is very motivated to acquire new skills.

Goals

1.         Increase tone and co-contraction abilities

2.         Increase visual tracking.

3.         Increase hand manipulation and finger isolation skills

4.         Increase following directions and task-planning abilities.

5.         Stimulate vestibular  (nystagmus) responses inclusive of but not limited to balance and reciprocal movement patterns.

6.         Increase crossing the midline of the body and gross motor movement patterns; such as skipping, somersaults, etc.

7.         Facilitate a more functional pencil grasp.

8.         Increase problem-solving abilities.

9.         Increase frustration tolerance and the acceptance and ability to benefit from corrective remarks.

10.   Teach the Sensible Pencil Program.**

**I particularly like the Sensible Pencil Program™ for early writers because of its guided worksheets and prewriting picture format.

When learning to write is less important than learning to write your name

first printed in

Advance for OT August 2012

Susan N. Schriber Orloff, OTR/L

A rising 6^th grader, Johnny* (not his name) was sent to WIN™ (Write Incredibly Now™) handwriting camp.  His mother’s goal was for him to learn to write sentences and know his cursive alphabet automatically.  Johnny’s goal was to learn to write his name.

It was a goal from which he could not be deterred.  He wanted to write his first and (long) last name fluently.  His motivation for this was in hyper-drive.  So choosing to move from a point of success to more success. Johnny learned to write his name.  It took all week.

It should be noted that in addition to writing the camp covered midline orientation, pincer grasp, bilateral coordination, spatial organization, figure ground discrimination and visual tracking.  Utilizing crafts and games that were sensory-kinesthetic based, Johnny learned how to use his body so that he was comfortable sitting, reaching, and writing as well as being aware of those close to him.

It was a lot to cover in the short 12 hours made even shorter by his refusal to learn to write anything other than his name.  But his name, having so many letters and letter combinations did feed into the flow-go-stow patterns necessary for automatic writing.

Which brings my therapeutic soul to question, “Who’s goals should I be meeting?”  Clearly I met Johnny’s goals, but equally clearly, I did not meet his mother’s.  This has been a conundrum for me, and I suspect many of my colleagues as well.

I feel that it is impossible, particularly with older children to force goals upon them and that success breed’s success.  By meeting his goals first I was then able to go on to meet the other goals in a follow-up session.  Mom was satisfied, and Johnny was happy he had learned to write his name and please his mother.

It is important to understand the symbolic importance of writing one’s name.  While doing PRN work at a spinal center I met a man who was a recent quadriplegic.  A successful businessman, his goal was to learn to write his name again, so that he could sign payroll checks, contracts and related business papers.  This was more important to him than learning to dress, feed or perform personal hygiene tasks.  But once he had learned how to sign his name, interest in the other tasks became important to him.

Handwriting is daunting.  It is intimidating for many. It is a graphic example “advertising” oneself.  It is semi-permanent; more so than the spoken word that quickly dissipates into air.  It is on paper and it is visible for both the writer and the reader.  If it is messy, not legible, or otherwise unacceptable it can serve as an unexpected example of one’s related abilities.

Keith Berry, Ph.D., the author of the Visual Motor Integration (VMI) tests, states that  “…Besides the fact that handwriting, as a common graphic behavior, is a natural vehicle for teaching, there are broader reasons for focusing upon it.  Our schools are encountering increasing numbers of children who lack solid mental and social foundations, and who are at risk of becoming school and social dropouts. Handwriting is frequently an indicator of children’s mental and social foundations.  If a child lacks an adequate mental foundation, in the Piagetian sense, because of insufficient sensory-motor and other experiences, it tends to show up in poor handwriting.  Similarly, if a child lacks an adequate social foundation—has not developed basic self-respect and respect for other—it also tends to evidenced in poor handwriting.” (pgs125-126 VMI Scoring Manual, 4^th Edition, Revised).

Teaching handwriting is a sensory motor skill and it is an emotional/social one as well. It is essential that it be a standard part of both the elementary and middle school curriculums.  And this needs to be communicated by school-based occupational therapists throughout the country.  The United States of America is the only western industrialized country that does not have a uniform handwriting program. 

Writing our name is basic.  We learn this in preschool.  It is our first academic source of pride.  It is step one in the process of learning to read and write.  As a profession we need to remind school administrators that even in a computer based society, handwriting matters.  And it all starts with clearly writing one’s name.