By Marcia Braden
Finding the most effective interventions for students with Fragile X syndrome (FXS) can be difficult and often result in a “trial and error” approach. Even though a number of strategies have emerged and have been documented in the literature, the evidence-based interventions are limited. Promising outcomes are continuing to develop using the cognitive phenotype to better understand how to best teach students with Fragile X syndrome.
Too often, effective interventions cited in the literature (what works) are not integrated into individualized education programs (IEPs), creating a research-to-practice gap. This gap negatively impacts student learning and limits school success. All members of the multidisciplinary team must turn to the literature to guide planning and implementation of educational intervention. Only then will students realize their potential and experience positive learning opportunities.
There are certain curricula that are produced commercially for related populations that have been used with students with Fragile X syndrome. These interventions can be cross-referenced with educational goals and aligned to learning standards.
Cognitive and Behavioral Profile
In order to better understand and apply meaningful intervention, it is necessary to consider the cognitive and behavioral profile of those affected with Fragile X syndrome.
People with Fragile X syndrome can have challenges that include slower processing speed, poor short-term memory, and short attention spans. They can have ADD, ADHD, autism and autistic behaviors, social anxiety, hand biting, hand flapping, poor eye contact, sensory disorders, and an increased risk for aggression. The majority of males with Fragile X syndrome demonstrate a range from moderate learning disabilities to more severe intellectual disabilities.
People with Fragile X syndrome can have strengths that include excellent imitation skills and a strong visual and long-term memory. They like to help others, are very social and have a wonderful sense of humor.
The reason this information is important is that it forms the basis for intervention and individual educational programming. Individuals with Fragile X syndrome require targeted educational treatment in order to access their abilities. Specific strategies that use strengths to learn is a win for both the individual with Fragile X syndrome and the teaching staff.
Creating an Effective IEP
An individual education program (IEP) is developed for children meeting the criteria for an educational disability. The child is evaluated to determine if they are eligible for special education, and then if the team determines eligibility, a plan is written to determine how the child’s educational needs will be met. The team must determine that the impact of the disability is significant enough that the child cannot access the general education curriculum without significant support.
The impact statement, which is part of the IEP, forms the basis for goals and accommodations. With a child with Fragile X syndrome, the impact statement should include the cognitive and behavioral phenotype. This means that specific supports and objectives can be written into the IEP in order to meet the needs stated in the impact statement. Many parents are unaware of the significance of the impact statement so they should ensure the unique features of Fragile X syndrome are included in the impact statement.
Many parents advocate for a Fragile X syndrome-specific IEP but may not understand exactly how to address the impact Fragile X syndrome has on their child’s learning. Including those features in the impact statement not only allows for the issues of Fragile X syndrome to be addressed, but also those unique to a specific child with Fragile X syndrome.
Because hyperarousal can greatly influence an individual’s performance and their ability to learn and function independently, relevant information about the causes and effects of hyperarousal should be included in the impact statement.
The IEP is a legal contract between the school district and parents or guardians. The related services necessary to meet the needs and goals will also be determined at the IEP meeting. It is important for parents to consult the consensus documents, written by a number of experts in the field, in order to advocate for their children.
Starting with a good learning environment, specific educational strategies that use strengths to address weaknesses and incorporate behavioral remedies will ensure the child’s access to meaningful educational intervention.
Using Interests to Motivate Learners
It has long been noted that individuals with Fragile X syndrome remember details over time and are often prompted by an object, location, or person to recall details about a past event. In addition, they are able to identify a number of interests that they spend time talking about and use to connect with others.
There are a number of ways to structure learning lessons that incorporate high-interest materials. For example, reading can be taught using superheroes and movie and television characters. Matching names to pictures and then expanding to matching phrases to pictures promotes engagement. Their visual memory strengths can be enhanced when high-interest materials are utilized and will bring immediate success when prior academic endeavors have failed. This level of engagement builds confidence in the learner.
Teaching math to individuals with Fragile X syndrome is difficult due to a number of issues. Math is sequential and builds on sequential memory. As is documented in the literature, the learner with Fragile X syndrome does not process sequentially and lacks sequential memory. Many aspects of math require memory of unrelated facts and often do not include a context as is the case for reading. It is often best practice to teach math in a simultaneous fashion using math to solve real life problems. The focus on functional math skills can provide the context to make a purchase, set a timer, or measure a quantity in order to follow a recipe. Using activities of interest like cooking can provide motivation to learn math skills that would normally be lost.
Individuals with Fragile X syndrome often struggle with motor planning and visual motor deficits. Those deficit areas make handwriting very difficult and frustrating. Using programs that utilize a context such as the writing strand of the Logo Reading System along with commercially made curriculum Handwriting Without Tears, can help to build writing skills.
Telling a story (Logo Reading System) or providing verbal prompts (Handwriting Without Tears) provides a context from which to learn how to form letters and draw.
Providing a Positive Learning Environment
The environment is the easiest thing to change and can have a huge impact on behavior, as the neurobiology collides with the environment. Changing the environment can support learning by providing predictability and reasonable outcomes. It is important to assure the learner that taking risks will be supported and academic struggles will be scaffolded with visual supports.
The teaching staff can also encourage learning by aligning with the student with Fragile X syndrome to know when they need help and how to improve the outcome. Research indicates that engagement of elementary school children with Fragile X syndrome is strongly related to the classroom environment and instructional quality of the teachers. The ways the teachers structure and arrange the classroom environment is much more important to student engagement than specific aspects of the child’s Fragile X status, medication use, or dual diagnosis.
There are a number of sensory needs that may also need attention in the classroom. Providing sensory supports can have a positive effect on the educational process. It is always critical to utilize a multidisciplinary approach and to consider the cognitive profile whenever implementing any strategy.
Advocating for an appropriate educational program, whether it be in the school system or through the transition to the world or work, requires an understanding of best practice and allows for more success in the process. There is now good research that supports anecdotal observations from therapists and teachers to request specific intervention and academic strategies to better meet the needs of those with Fragile X syndrome. With these supports and curricular adaptations, people with Fragile X syndrome will be more able to reach their full potential.
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about
Marcia Braden, PhD, PC
Dr. Braden is a licensed psychologist with a clinical practice specializing in children and adolescents, and serves on the NFXF Scientific and Clinical Advisory Committee and the HillSprings Learning Center Advisory Committee. She is also a contributing author of Fragile X Syndrome; Diagnosis, Treatment, and Research, compiled and edited by Randi and Paul Hagerman, Children with Fragile X Syndrome: A Parent’s Guide, edited by Jayne Dixon Weber, and author of Fragile: Handle With Care: More About Fragile X Syndrome.