For many people, with or without disability, having an opportunity to be involved in their community is important to a sense of contributing and feeling valued as a person.
In our Working with Fragile X video, several adults who have Fragile X syndrome speak about their wish to be involved in work, and the challenges they have faced in gaining employment.
There are a range of work options and programs available for people with Fragile X syndrome, after transitioning from a school environment and throughout adulthood. Opportunities include paid or unpaid work, full-time or part-time, in open employment or supported employment. Jobs may be found through job placement networks, specialist disability services, or through community or family connections. Having a job coach in the work environment can be very helpful. Some people with Fragile X syndrome may work in their own business, with assistance. Volunteering is also an opportunity to gain experience and to have a fulfilling connection with the community.
Some government services can assist people with a disability in preparing for employment, or finding employment. There are specialist pre-employment training services, and some offer ongoing support in the workplace.
The NDIS planning process can include employment. The Job Access website has information about the federal government’s Disability Employment Service (DES), and can be used to find a list of disability employment services in your area.
People with Fragile X also have many very real strengths which can be of benefit in the workplace and provide them with a satisfying work experience:
- Aptitude for visual learning and imitative behaviour
- Long term and incidental memory
- Ability to relate to and take part in concrete and relevant tasks
- Willingness and ability to complete repetitive tasks
- Good functional life skills
- A friendly and social nature, and good sense of humour
Some common characteristics of people who have Fragile X syndrome may present difficulties and require appropriate supports in the workplace. These can include:
- Planning difficulties: Coordinating and retrieving information, motor planning (trouble getting started), managing time
- Inhibition: Modulating/regulating incoming sensory stimuli, concentration and focus
- Mental flexibility: Bogged down with details, rigid thinking, perfectionism, perseveration (getting stuck)
- Auditory processing skills lesser developed than Visual processing skills
- Sequential processing skills lesser developed than Simultaneous processing
- Expressive language deficits
Source: Dr Marcia Braden PhD, Fragile X Workshop, Sydney, Australia, 2015
Some people with Fragile X syndrome may prefer work that has:
- Predictability, with a set routine
- Consistency from other staff or co-workers
- Consistent job coaching
- Out-door or not constrained work environment
- Quiet environment with limited sensory input
- Non-sequential work tasks
- Small group environment with social contact
- Opportunities and space to step away and calm down
- Non-verbal/visual instructions
- Limited requirement for verbal interaction
It is important to recognise the strengths of the person with Fragile X syndrome and adapt the work and learning environment to meet their needs.
Structure and predictability in the workplace can help to reduce the level of anxiety people with Fragile X commonly experience. For example: work schedules that are concrete, specific, and consistent.
Ongoing training and supports for the employer, work colleagues and the employee with Fragile X syndrome, are very important for a successful placement.
To Learn more:
Video produced by Fragile X Association of Australia. Zoe, Marty, Rosie, Hugh and Ross, young adults with Fragile X syndrome, share their experiences in looking for work. The employers of Ross and Hugh talk about the many positives in employing a person with a disability, for both employer and employee. (viewing time 10 minutes)
Read the personal stories of Marty, Matt, and Richard about their opportunities and experiences in the workplace and in volunteering