Back to school 2024 | Resources for educators & parents

February 2nd, 2024

Fragile X syndrome has a well-researched and recognised learning style. When the strengths and challenges inherent to the cognitive profile of this genetic condition are recognised, and appropriate accommodations are made to incorporate that style, children and adults with Fragile X syndrome will have successful learning outcomes. This includes learning throughout the lifespan from childhood right through adulthood. Understanding the Fragile X learning style and making appropriate accommodations is essential for success.

What you’ll find here!


The resources listed here will:

* provide an understanding of what underpins the unique Fragile X learning style and how Fragile X-associated anxiety and developmental delays impact learning
* present practical support strategies that will be helpful in achieving successful learning.

The resources will be helpful for educators and parents/carers who have young or older students with Fragile X syndrome. The resources will be equally useful for support teams in community or workplace settings in which adults who have Fragile X syndrome are participating.

In The Essentials you’ll find links to short videos, downloadables and podcasts. Under Deep Dive you’ll find links to webinar or workshop recordings, podcasts, and other resources providing more comprehensive information.


Psychologist and former educator Dr Marcia Braden PhD is the presenter in many of these materials.  Based in the US, Dr Braden is internationally recognised as the pre-eminent  specialist in learning and behaviours associated with Fragile X syndrome. Dr Braden has presented in Australia many times in person, and most recently has become a regular presenter for our FX webinar series.


Overview

The neurobiology of Fragile X syndrome and consequent developmental, anxiety and sensory sensitivities associated with Fragile X require active accommodations, planning, and management to achieve success in daily living and learning.

However, alongside this, it’s important for educators and support teams to know that children and adults with Fragile X syndrome have many strengths which when harnessed will facilitate successful learning.

The daily living challenges for many individuals who have Fragile X syndrome are wide-ranging. Such as Fragile X-associated anxiety/hyperarousal, short-term memory & attentional control, hyperactivity, weaker executive function, sensory processing problems, developmental delays and, for most males with Fragile X syndrome, intellectual disability.   For females, anxiety/hyperarousal, masking and avoidant behaviours present challenges. Some individuals with Fragile X syndrome may exhibit behavioural problems such as repetitive actions, outbursts and difficulty with socialising. A diagnosis of autism spectrum disorder may also apply for around 50% of males with Fragile X, and fewer females.

Learning strengths associated with Fragile X syndrome can facilitate successful learning outcomes.  Strengths include:  good long-term memory, associative learning ability, responsiveness to high-interest materials and to modelled behaviours, and a highly visual and gestalt learning style.

It’s important for educators and support teams to understand that while females with Fragile X syndrome are typically differently affected than males, they may also experience Fragile X-associated anxiety/hyperarousal, some developmental delays, executive functioning difficulties, difficulty with abstract concepts, low muscle tone and sensory processing problems.  The webinar recording Females and Fragile X syndrome (below) presented by Dr Braden is highly recommended for educators and teams who are supporting a young or adult female who has Fragile X syndrome.

How to structure a learning environment to account for the challenges AND capitalise on the strengths of Fragile X syndrome?

Strategies for success will include Predictability, Choices, Structured tasks, Calming strategies, Time for sensory diets and movement, strong and consistent use of Visual aids, and more,  covered in the resources below.


THE ESSENTIALS

  • Understanding Fragile X (7 minutes)
    Our classic explainer, this presents an overview of Fragile X syndrome, presented by health professionals Dr Jonathan Cohen MDProf Randi Hagerman, and Dr Natalie Silove   and two parents.
  • The Cognitive Profile of Fragile X (13 minutes)
    Dr Marcia Braden PhD outlines the cognitive profile which stems from the neurobiology of the genetic condition Fragile X syndrome. This is key to understanding the impact of Fragile X syndrome on learning and behaviours.
    VIDEO AND PODCAST – On youtube (below) and Spotify /Apple podcasts.
    Spotify link here: https://open.spotify.com/episode/1si6sI0FI6rXgAzzPIbzUO?si=62424dca5eaf4c37
  • Educational Strategies to Support People who have Fragile X syndrome (13 minutes)
    Strategies to support successful learning include: predictability, choices, structured tasks, calming strategies, time for sensory diets and movement, indirect attention, and strong and consistent use of visual aids. Presented by Dr Marcia Braden PhD.
    VIDEO AND PODCAST – On youtube (below) and Spotify /Apple podcasts.  Spotify link here: 
    https://open.spotify.com/episode/2BSfGQjhx4LpzxYlV2eJzO?si=c8c6286961a44ad2
  • Classroom Adjustments to Support Students with Fragile X Syndrome (Podcast – 25 minutes)
    This is part of a series of podcasts produced by the Victorian Department of Education in 2019 to highlight adjustments that can be made in classrooms to enable students with disability to access and participate in education on the same basis as their peers.  This podcast features 11-year old Jimmy who has Fragile X syndrome, his class teacher, his parent, and an occupational therapist Bev Kadish who shares her top tips on helping students with Fragile X syndrome learn to self-regulate, and reducing anxiety in the classroom.
    Find the podcast on Apple podcastsSpotifyGoogle podcasts and here:  https://www.nccd.edu.au/professional-learning/classroom-adjustments-fragile-x-syndrome

  • Snapshot: Top Tips for Educators to Know about Fragile X – from National Fragile X Foundation   Download as pdf

This is a 2-page document prepared by the National Fragile X Foundation in the US for teachers or anyone working or supporting an individual with Fragile X syndrome. It outlines the learning strengths and challenges associated with Fragile X syndrome, and how to work with these traits. It also flags that anxiety/hyperarousal come with the territory, due to the neurobiology of Fragile X, and has some tips for transitions.    Here’s a snapshot of the top tips:

  1. Don’t force eye contact.
  2. Functioning varies
  3. People with Fragile X syndrome learn the whole rather than the parts
  4. Allow and/or encourage frequent breaks
  5. Understanding verbal input
  6. Think “INDIRECT” when asking questions
  7. Transitions can be difficult
  8. Include support services such occupational therapy, speech & language and physio
  9. Notice environmental triggers
  10. Know FXS strengths
  • Mind map – supporting the learning style associated with Fragile X syndrome
    This diagram was put together by one of members to help her child’s teacher understand how best to support her child with Fragile X syndrome.    Shared with permission.
    Download pdf

 


Deep Dive!

  • FRAGILE X AND A LIFETIME OF LEARNING (webinar recordings, 2023)
     2-part presentation by Dr Marcia Braden PhD in 2023 for Fragile X Association of Australia and Fragile X New Zealand.   In Part 1 Dr Braden discusses accommodations to work around the challenges and harness the strengths of a child or adult living with Fragile X syndrome, in a range of learning environments – in the home, school, workplace setting or in the community. In Part 2 Dr Braden showcases strategies which utilise learning strengths and are applicable for a classroom, and in community and in job settings.  Dr Braden provides examples of successful school supports and work placements that match learning style to tasks.
    VIDEO AND PODCAST – Parts 1 and 2 are available on youtube (below) and Spotify /Apple podcasts.  Spotify links here:
    Part 1:  https://open.spotify.com/episode/2k76oLvpIe394YDQfcZw4a?si=f32313eb8a4e469e\
    Part 2: https://open.spotify.com/episode/60Utjjh4pHowZdn1EKFshK?si=66c791de123a4d14
  • ANXIETY AND BEHAVIOURS IN FRAGILE X SYNDROME (webinar recording, 2023)
    Dr Marcia Braden PhD presents an extensive discussion on how Fragile X-associated anxiety impacts daily living for children and adults living with Fragile X syndrome. Dr Braden explains why anxiety is a key trait in Fragile X syndrome, and how it is different to anxiety experienced by neurotypical individuals. Dr Braden presents practical tips and strategies for helping individuals to manage their anxiety for successful outcomes in learning and daily living.
  • FEMALES AND FRAGILE X SYNDROME: UNDERSTANDING THE CHALLENGES (webinar recording, 2022)
    Dr Marcia Braden PhD presents an extensive discussion on supports that can help address the social and learning challenges which females who have Fragile X syndrome may face. Dr Braden discusses how the neurobiology of Fragile X syndrome affects learning and daily living. She presents strategies which help overcome learning challenges associated with Fragile X, such as difficulties with working memory,  mastering math, and certain abstract concepts. Dr Braden also discusses social anxiety, shyness and masking. These are traits associated with Fragile X syndrome and will present challenges for daily living and learning. The recording concludes with some Words of Wisdom from the experts – 4 Australian girls and women who share their experience of living with Fragile X syndrome.
  • Fragile X Syndrome & Understanding Anxiety and Sensory Needs –  free online education program developed by Fragile X New Zealand 2023.
    This new online interactive program for parents, support workers and other professionals focusses on developing an understanding of anxiety/hyperarousal and sensory sensitivities associated with Fragile X syndrome. The program was written by parents of children with Fragile X syndrome who have a background in education.
    Fragile X New Zealand has made this available free via their website www.fragilex.org.nz
    https://fragilex.org.nz/fragile-x-syndrome-anxiety-and-sensory-needs/


Resources for educators: Back to School Resources from National Fragile X Foundation (US)

The National Fragile X Foundation (NFXF) is the parent support group and advocacy body for the Fragile X community in the United States. The NFXF website has a number of printable resources for educators and parents about Fragile X syndrome. Such as

  • downloadable sheet for teachers about Fragile X and supporting the FX learning style   
  • tips for for supporting the transition back to school
  • educational guidelines for pre-school, elementary (primary), and middle and high school students0

Find these resources and more here:   https://fragilex.org/understanding-fragile-x/info-series/school-resources/

Fragile X Info Series: Back to School Resources

 

 

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