LEARNING DIFFICULTIES

Over 100 affected children are known and in the majority of these (97%) the learning difficulties are classified as severe.

At birth, the children are ususally floppy and it is often apparent in the first 6-9 months that the baby's development is delayed. The "motor milestones", such as sitting unsupported, are delayed. Some never crawl, and those that do eventually walk may not start till late in childhood. Most remain in nappies (diapers), though occasionally, with training, a degree of bowl and bladder control may be achieved. Many children will learn to drink from a cup or glass and will finger feed or use a spoon.

Speech is usually absent though some learn a few words anda small repertoire of Makaton signs. The childrens' comprehension is also affected. Some are restricted to recognition of the family and awareness of their surroundings, and may be upset by a change to their daily routine. Others understand more, such as learning where a biscuit (Cookie) tin is kept, learning to turn on the TV and obeying simple commands. The boys may continue to acquire new skills for many years. Although physical illness may set the children back, it is NOT usual for them to regress developmentally or lose skills.

Until recently all the affected children have been classified as having severe learning difficulties. However, our recent experience with one family indicates that milder degrees of learning difficulties may exist. In this one family with 4 affected cousins, one lad is severely affected, whereas one has moderate learning difficulties and two mild learning difficulties. The latter two talk in sentences and have achieved a degree of independence in tasks of daily living. It is not clear if this family is unique or whether the spectrum of severity in ATR-X syndrome is broader than previously thought.