Building advocacy networks for people

so that they have a good life even after their parents are no longer here to stand up for them

Building advocacy networks for people

so that their families have peace of mind about the future

Building advocacy networks for people

so that they are empowered to realise their aspirations and contribute to their community

Building advocacy networks for people

so that they form intentional friendships that broaden and enrich their lives

Building advocacy networks for people

so that they develop stronger links in the wider community

Building advocacy networks for people

so that they are as fulfilled and happy as they can be

01989 555006

Information condensed from the Fragile X Society's website

Fragile X is a genetic condition. It's the commonest known cause of inherited learning disabilities, affecting around 1 in 4000 boys and men, and 1 in 6000 girls and women. This is a huge group of people with a wide variation.

Strengths commonly include a great sense of humour, long-term memory and sensitivity to others' emotions – which is why people with Fragile X are often described as having likeable personalities. They tend to be visual learners with strong imitation skills. They can be wonderful mimics, especially clever with accents and funny voices.

Challenges commonly include developmental delay, speech and communication difficulties, short attention span, distractability, impulsiveness and restlessness. Although many people with Fragile X relate well to others, they may feel anxious in unfamiliar or unpredictable situations. Many prefer to avoid eye contact and may seem self-absorbed. They may insist on familiar routines.

A substantial minority have more difficulty relating to others and may receive a dual diagnosis: Fragile X with autism.

Communication Tips

Be calm and relaxed.

Low-key, one-to-one conversations in a casual setting may be best. For instance, you could invite the person to tell you about one of his/her interests. Listen supportively, giving your full attention and using your eyes as well as your ears. All behaviour (not just speech) is communication.

Avoid putting the person on the spot or asking too many questions.

Recognise that predictability, structure and consistency are important because they can give a sense of reassurance.

Avoid over-stimulation and unnecessary changes in routine.

Enjoy having a laugh together, even if the joke is on you.

For Further Information:

The Fragile X Society
Rood End House
6 Stortford Road
Great Dunmow
Essex CM6 1DA

Tel: 01371 875 100