Studies involving the impact of an ASD co-diagnosis in FXS have to date relied mostly on parent-reported data and/or smaller sample populations. But thanks to the registry and longitudinal database FORWARD—the Fragile X Online Registry With Accessible Research Database—plus standardized clinician- and parent-reported data from 25 Fragile X clinics, we now have access to samples large enough to include a breakdown of findings by age groups.
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Individuals with FXS often have difficulty establishing meaningful friendships. Limited social skills, social anxiety and an often narrow range of interests contribute to these difficulties. Various interventions can increase the social network of those with [...]
We have just launched a new web tool - Fragile X syndrome resources, categorized by age group. The goal of the tool is to give parents, caregivers, educators, family members, etc. a one-stop-shop to find [...]
When consulting with parents regarding behavior issues, the topic of time-out comes up during the majority of my conversations. Parents and professionals alike have used time-out as an effective tool for many years—even before [...]
Several strategies can help in guiding a successful transition. If the student is going back to the same school with the same teaching staff, the transition process is easier and requires less support. When the student changes schools, neighborhoods, or programs, additional support is required.
I learned pretty quickly that visits to a dentist were going to be a challenge for my son, Ian. I demonstrated the process over and over again. I helped him brush his teeth, I encouraged him to brush his own teeth, I tried different tooth brushes and I tried different kinds of toothpaste. I took Ian to my dentist to watch me get my teeth cleaned. He saw his sister get her teeth cleaned.
Mantras, like positive affirmations, really do have power. In our case, we have found mantras to be useful for both skill development and to support self-regulation. So what are mantras? Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus thinking and action.
Toilet training can be a difficult and challenging experience for children and parents alike, and the challenges can be magnified for families of children with Fragile X syndrome (FXS). It is not simply that toilet training is delayed for these individuals, but it often requires specific behavioral techniques that address the physical and behavioral phenotype of children with FXS.
Let's discuss verbal perseveration (VP), a very typical and pervasive aspect of language in Fragile X syndrome. Does VP interfere with daily living and activities? You bet your boots it can! At home, school, after school activities, transition times: VP can have an impact on them all. On the list of questions parents ask, verbal perseveration is at the top.
How do we prepare children and adolescents to access their communities,without running the risk of their being exploited, or showing affection in inappropriate ways, using sexual language that may be misconstrued, or touching body parts that could bring legal action, or at the very least a disgruntled public?
When discussing Fragile X syndrome and behavior, it is important to note that - like every person - the focus should not only be on the challenging behaviors that you may see. It is essential [...]
A client asks: “Why does my child cry when people sing ‘Happy Birthday’ to her?” Many years ago when I first heard this from a parent of a girl with a full mutation, I thought [...]
During a recent school consultation, I was reminded of how the behavior of students with Fragile X syndrome is often misunderstood in the classroom. Watching a student with FXS struggle is difficult when his behavior is affected by those characteristics that make up the Fragile X phenotype. (See chart below.) The fact that sensory input is difficult for him to interpret or that his speech production is cluttered and hard to understand or that his learning style is counter to the way teaching is traditionally conveyed may be the very reasons he is acting out or refusing to participate.