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Fragile X in Children with Autism

Introduction

Fragile X Syndrome (FXS), also known as Martin-Bell Syndrome, is a genetic disorder that does exhibit autistic-like behaviors such as poor eye contact, hand-flapping, hand-biting, poor sensory skills, behavioral problems, speech and language deficits and learning difficulties. Due to the many advances in science today, researchers and clinicians have a greater understanding of the differences and similarities between FXS and Autism Spectrum Disorder (ASD).

FXS is a specific identifiable condition with a known genetic cause and ASD is a cluster of symptoms with a possible variety of causes. Social interaction is a key deficit in ASD whereas intellectual function and hyperarousal/anxiety is the core deficit in FXS. Children with FXS want to have social interaction but their anxiety often prevents that, while children with ASD rarely seek out social interaction. FXS children demonstrate to have greater imitation skills than ASD children. Most behavioral issues in FXS are due to high anxiety and hyperarousal whereas with ASD the sources of behavioral problems can be multi-faceted and much more complex. Studies are ongoing to know further information about the overlap between FXS and ASD. Continuing research in this area will help parents, educators and clinicians distinguish the differences and similarities between FXS and ASD so that appropriate interventions can be implemented based upon individual needs and specific characteristics.

Related Sites

National Fragile X Foundation
Description:  The National Fragile X Foundation (FRAXA) is a non-profit research organization working toward finding a cure. They have funded over $25,000,000 toward research. Learn about their clinic trials and effective treatments.

National Human Genome Research Institute
Description:  NHGRI is all about advancing genome research. This site provides the clinical research on Fragile X Syndrome and the available additional resources. In addition, this site also provides a detailed explanation about Fragile X permutation.

Cleveland Clinic
Description:  Cleveland Clinic website for diagnostic testing needed to determine Fragile X Syndrome.

FRAXA Research Foundation
Description:  The National Fragile X Foundation (FRAXA) is a non-profit research organization working towards finding a cure. They have funded over $25,000,000 towards research. Learn about their clinic trials and effective treatments.

Books

Fragile X Fred by Julia Bassell (Author), Jayne Dixon Weber (Author), Jeannie Visootsak MD (Author), Jordana Roteman Slawin (Illustrator)
Description:  Fragile X Syndrome is a genetic disorder that is not very well comprehended. This book is written for parents, siblings, educators, therapists and individuals with Fragile X to help them have a deeper understanding.

Speech and Language Development and Intervention in Down Syndrome and Fragile X Syndrome (CLI) 1st Edition, by Joanne Roberts Ph.D., Robin Chapman Ph.D., Steven F. Warren Ph.D., Marc E. Fey Ph.D., Donald Bailey Jr. Ph.D., and Jon Miller Ph.D.
Description:  This book focuses on the language and speech issues associated with Fragile X and Down Syndromes allowing the reader to customize a plan based on their individual assessments.

Fragile X Fragile Hope: Finding Joy in Parenting a Child with Special Needs by Elizabeth Griffin
Description:  The author writes a very moving personal account of her own son’s journey with Fragile X Syndrome and Autism. It is a story about hope for every parent with a child with special needs.

Understanding Fragile X Syndrome: A Guide for Families and Professionals by Isabel Fernández Carvajal
Description:  This book is provides valuable information of the complex science, relevant facts and pertinent advice for both parents and professionals. It is essentially a reference tool covering all areas of concern for families with FXS children.

Tools

Fragile X Syndrome: A Guide for Teachers by Suzanne Saunders
Description:  Learning difficulties is one of the greatest challenges for children with Fragile X Syndrome. Many professionals have very little knowledge on how to teach this population. This book provides great insight, support and advice and is a perfect resource for teachers.

Fragile X Autism Connection
Description:  This is a video of an interview given by Katie Couric with a family with a child with Fragile X Syndrome. The family describes how they came to know and understand what their son had, what to do and how to address this disorder.

Fragile X Clinics
Description:  Learn about what is a Fragile X Clinic and find and locate one within the United States.

Living with Fragile X
Description:  An inside look at one family’s life on a daily basis with a child with Fragile X.

Molecular Pathways in Fragile X Syndrome
Description:  Webinar: Claudia Bagni details molecular pathways in Fragile X Syndrome.

Parent Forums/Blogs

Some forums require you to sign in to Yahoo or Facebook to locate forum names.

Forum/Blog Name:  Parent Forum for Families with Fragile X Syndrome
Description:  This is a special forum for parents and family members of children who have Fragile X Syndrome. The forum is intended to share and support one another in your quest to find a cure.

Forum/Blog Name:  Fragile X Syndrome
Description:  This Facebook group is a community page run by parents of children with Fragile X Syndrome and provides information and support.

Forum/Blog Name:  A Day at a Time
Description:  One family’s blog – Our life with Fragile X and a side of Autism.

Forum/Blog Name:  Important Resources for Families with Fragile X Syndrome
Description:  The Friendship Circle Blog provides valuable information for parents and professionals.