I still remember the first time I heard about autism, when a parent came to talk to our Guide Company over 30 years ago. As a new graduate, I read up on Neurofibromatosis, which affected one of my young clients. A few years later I learned about Fragile X Syndrome and the Fragile X Society through a very dedicated parent whose son is now a young adult.
If you work with disabled children and their families, you will come across many who already have a diagnosis, or who are going through an assessment process where a diagnosis may help those around the child understand their needs. Some you may have heard of – awareness of CHARGE syndrome, for example, is growing. But others, such as Dravet Syndrome or Wolfram Syndrome, may be completely new. Contact a Family added these recently to their Directory. This lists physical symptoms, psychological and behavioural characteristics for 430 disabilities and health conditions, along with details of relevant UK support groups.
Chief Executive Srabani Sen says, "Families really appreciate it when speech and language therapists find out about their child's condition. It helps them feel more understood and less isolated. Research shows that parents of disabled children who enjoy positive relationships with the professionals involved in their children's care often cite them as important sources of emotional and practical support."
The Contact a Family Directory is available online (£17.25 per year) and in print (£40), tel. 020 7608 8700.