The child and young person with a learning disability: a guide to self-help resources and information

Children with learning disabilities require constant support in order to live an ordinary life with their families. It is important that parents receive clear and appropriate information and that the child can gain access to materials that explain and allow a better understanding of his or her special problems. Today parents and individuals themselves have chosen the term learning disability in order to convey information about the disability, this term will be used throughout. We have looked at many resources available from organisations and the internet and outline a few available texts.

Children with learning disabilities and their families

The Tavistock Clinic has published a series of books designed to help parents to understand and anticipate the needs of their children. The series titled Understanding… starts from the newborn baby and continues well into adolescence. The series includes the title Understanding Your Handicapped Child (Sinason, 1993). This contains factual information about disability and vignettes from the therapist's own practice. It examines the practical as well as emotional issues that are involved in the care of a child with a learning disability and gives some description of the roles of the different professionals who are likely to be involved.

The Mental Health Foundation has also considered in three of its publications (Learning Difficulties and the Family) the problems that confront parents. The first publication deals with problems arising at the moment when parents realise that their child has been diagnosed with a learning disability (The Young Child with a Learning Disability); the second deals with the impact of a child with a severe disability on the family and the need for constant support and supervision (The Teenager with Severe Learning Difficulty). The third considers the questions that arise about the child's independence and how to allow an adult relationship to develop, aiming at individuation and separation (Leaving Home, Moving on).

In the UK the Royal College of Psychiatrists published Mental Health and Growing Up (Tufnell, 1999), containing 36 factsheets that have information about the emotional and psychological problems of children and young persons. The two that give information on learning disabilities, autism and Asperger's syndrome are addressed to parents, carers or teachers. Similar information is available from the American Psychiatric Association and associated agencies. The American National Institutes of Health (http://www.nih.gov ) also offer information for parents whose children have learning disabilities or in addition have attention-deficit hyperactivity disorder (ADHD). Jessica Kingsley Publishers produce a range of books on topics such as how to cope with a child with a challenging behaviour, how to organise an appropriate environment for a child with special needs and develop the child's skills and abilities in everyday activities. Information for parents on education and special needs can be found in guides published by the Department of Education (http://www.DFEE.gov.uk ). Advice to young people with disabilities themselves is also available.

Books Beyond Words have been designed by Professor Sheila Hollins and others (St George's Department of Psychiatry of Disability) for a person with a learning disability to deal with situations in everyday life. For instance, themes in the series include change of home, death of a parent, talking about abuse, appropriate social contact, going to the doctors or the hospital and going to court. We have found these books very helpful in clinical practice with a range of ages (available from the Royal College of Psychiatrists' Book Sales Department, tel: 020 7285 2351 ext. 146). Media based self-help has been evaluated in the training of parents as therapists. However, there is inconclusive evidence of the impact of this without proper supervision and professional involvement (Kashima et al, 1988).

Autism and other developmental disorders

I am Special, published by Jessica Kingsley Publishers (Vermeulan, 2000), introduces children and adolescents with autistic spectrum disorders to their condition. It contains information about autism and the specific problems that people with the condition face in their day-to-day life. It explains why a child or young person with autism is different and how his/her relationships with others can be affected as a result. The book is divided into two parts. The first part introduces a child to the terms autism and Asperger's syndrome and explains how to use the worksheets. The second is designed to help the child develop a book about him-/ herself. This may also increase the child's engagement by enrolling the parent or teacher or other professional to work on the exercises with the child. It uses pictorial and written language to assist the child, who may have communication difficulties. The book is appropriate for children over 10 years of age. The same publishers also offer books written by a person with a learning disability about his or her own life.

Another very important source of information for parents is the National Autistic Society (NAS) (http://www.oneworld.org/autism_UK ). The NAS has published both written and audiovisual material to help children with autism to receive better care and improve their quality of life. The publications include leaflets with the main signs and symptoms of autism and Asperger's syndrome, advice for educational and occupational opportunities, lists of local parents' groups and available interventions. Another NAS publication, It can get Better (Dickinson & Hannah, 1998) deals with common behaviour problems in young children with autism. It is addressed at parents and carers and offers advice on how to manage problems such as repetitive and obsessional behaviours, self-injury, destructiveness, sleep disturbance, temper tantrums and many more. Each chapter is illustrated, preceded by a brief introduction giving basic information on the problem to be discussed and followed by guidelines, a brief question and answer section and summary. It is inexpensive (Cost £5.00) and has very good advice.

Specific syndromes

Down's syndrome is the most common cause of learning disability. The Down's Syndrome Association (UK) (http://www.dsa-UK.com ) offers advice and support to parents in the form of booklets, local parent groups, newsletters and other specially organised events. Their booklet, which can be read online, gives parents important information about how to cope with the birth of a baby with Down's syndrome. It explains the syndrome and includes common physical problems and advice about how to play and interact with the child so that specific conditions can be remedied at an early stage (e.g. how to exercise the facial muscles so that they can become less hypotonic and support the tongue, how to stimulate the child and precipitate the next developmental phase). The Fragile X Society is another charity that provides support and information to parents and families of children with fragile X syndrome. The society produces a biannual newsletter that contains both facts and personal opinions by the parents themselves. The International Prader-Willi Association offers similar advice and guidance to parents through meetings, support groups and factsheets (http://www.ipwso.org ). ‘Contact a Family’ illustrated directory and website (http://www.cafamily.org.uk ) are good sources of information about syndromes and family support groups. The organisation puts a lot of emphasis on families contacting and linking with others who have the same experiences.

Conclusion

Self-help and information manuals are increasingly used to promote consumer awareness and empower individuals. We found many articles designed for parents, carers and teachers, but there were few written directly for the child or adolescent with a learning disability.

We have concentrated on sources specifically focusing on the child with a learning disability and the family. We would like to stress that such children have the same needs as all children and therefore general information may also be of help.