We just received an email from a parent celebrating the success of her child with fragile X syndrome (FXS). This ten-year-old had gone to the dentist, sat in the waiting room for a half hour, had his teeth cleaned, had a fluoride treatment and had a veneer placed on them. Usually, a visit to the dentist would be a nightmare: anxiety, hyperarousal, significant behavior problems – someone would end up black and blue. Why the change? Because the parents had, for the first time, implemented a visual schedule.

We use a variety of visually-based supports with individuals with FXS for a number of reasons:

  • Individuals with FXS are visual learners. We need to take advantage of this strength.
  • Anxiety is often a significant problem for individuals with FXS. Verbally explaining the day’s routine, or verbally describing what will happen at the dentist’s office, may work to increase anxiety, as working memory deficits make it difficult to hold information in mind. Presenting information visually, for example, through use of a visual schedule, can alleviate this problem.
  • Visual supports help “translate” the environment and expectations to an individual with FXS without requiring direct processing of language. This type of information can be processed quickly. Visual supports remain present so they can be referred to more than one time, whereas verbal directions might be heard and then forgotten.

Visual Schedules

Visual schedules can be used as a general schedule to depict:

  • The schedule of the day to discuss at home before school.
  • An at-school schedule, including arrival and departure information.
  • A sub-schedule for a specific activity at school (e.g. PE, time in the regular classroom, a craft project, lunch or potty time).
  • A new routine or change in routine (instead of driving home after school, you are going to Grandma’s house).
  • A possibly difficult routine, such as a visit to the doctor or dentist office.
  • The steps to learn a new skill.

For these potentially difficult events/routines (ex. doctor visit, math worksheets), you will want to be sure to take suggestions from the TEACCH curriculum and visually show the individual the answer to these four questions:

  1. What am I supposed to be doing?
  2. How long will it last?
  3. How do I know when I’m done?
  4. What do I do next?

Visual Supports for Play

Many parents are frustrated by their child’s behavior when given “free play” time. Some children may lack the initiation skills to know what to do with a toy, how to share a toy, or how to play with a friend. Adding structure to independent play time can help to organize the child’s play skills.

  • Set up a choice board so the child knows what play options are available. It is also helpful to organize the play area by clearly labeling toys, keeping toys individually displayed (such as in separate boxes and shelves) and keeping the play area organized. If puzzles are hard, double tape most pieces of a 24-piece puzzle to the frame, provide the child with only two or three additional pieces to obviously finish the puzzle. As their skill increases, have more and more pieces available for them to place.
  • Use video modeling to show how a toy is used or how two kids might play together on the playground.

Physical Structure Is Important. You can design the physical environment to support a particular skill or behavior. For example, furniture placement can help cue a desired behavior. Placement of a chair can show where to sit. If you have books, or a puzzle, on a table next to the chair, this can cue “what to do”.

Work Systems. Work systems are ways to create a routine way of completing learning tasks. By using a consistent system, the person knows how to respond, even though the individual tasks presented within the system vary. Visual structure can cue the correct response. For example, a child who is grouping items by color, might sort them into colored bowls.

Recommended Resources

Sarah “Mouse” Scharfenaker, MA, CCC-SLPSarah “Mouse” Scharfenaker, MA, CCC-SLP fondly known as “Mouse”, is vice-president, CFO and co-founder of Developmental FX. She has worked in the fields of fragile X syndrome and neurodevelopmental disorders for more than 25 years. She received both her undergraduate and graduate degrees from the University of Montana, Missoula.
Sarah “Mouse” Scharfenaker, MA, CCC-SLPSarah “Mouse” Scharfenaker, MA, CCC-SLP a Colorado native, is president and co-founder of Developmental FX. She is a leading pediatric occupational therapist (OT) involved in clinical treatment, research, mentoring, and training regarding OT intervention for persons with neurodevelopmental disorders, especially fragile X syndrome and autism.
Jennifer H. Epstein, PsyDJennifer H. Epstein, PsyD is a licensed clinical psychologist in private practice in Hingham, MA, where she works with children and families affected by autism, anxiety and other developmental concerns. She is a certified therapist and certified trainer in the Early Start Denver Model of autism intervention for toddlers. She worked at the Fragile X Treatment & Research Center at Children’s Hospital in Denver, Colorado from 1996 until 2010.