Ten Rules for Delivering a Diagnosis of Autism or Learning Disabilities in a Way That Ensures Lasting Emotional Damage

Diagnosis of learning disabilities or autism can happen at any point in an individual’s life. While this should mean freedom to move forward with information to access all that’s needed to live a fulfilling and rewarding life, the huge obstacles that exist in reality can make a diagnosis a cause for dismay. Furthermore, the way in which the diagnosis is delivered is often done without thought or preparation and consequently ensures lasting emotional trauma to the individuals involved and their loved ones. The aim of this thought-provoking booklet is to directly challenge the method and moment a diagnosis is given, so that it can become the defining opportunity to set individuals and their families off on a positive, hopeful path rather than a negative, diminished one. Each ‘rule’ speaks powerfully with the voice of the individual or family on the receiving end of diagnosis. Together, the 10 rules provide a useful starting point for discussion and a catalyst for action. Each is followed by suggestions for positive practices. The booklet also contains additional background information on good practice, together with references and sources of further information. The booklet has been written for anyone involved in providing diagnoses and follow-up support to autistic people, those with learning disabilities and their families, together with allied professionals, carers and student in relevant disciplines. It can be used for a wide range of purposes, including staff induction, learning disability and autism awareness training, individual professional development and reflection, and team discussions about the quality of practice and services provided.

Viki Ainsworth started her career at the BBC working on Public Eye, Breakfast News and in the Social Affairs Unit of the BBC Newsroom. Viki has over 25 years experience of working in all aspects of the media and is the Company Director of Presenters Inc. She is also a qualified Applied Behavioural Analysis therapist. She has three children Jamie, Saskia and Tilly. Tilly has severe learning disabilities and has had multiple medical issues from birth. The journey with Tilly has followed a path, familiar to many, of finding, funding and co-ordinating many hospital visits in multiple countries, endless form filling, respite care, benefits, assessments, developing a successful home ABA therapy programme, training a team from scratch and, of course, continual concern for Tilly’s comfort, wellbeing and safety. It is a journey which continues as Tilly transitions to adult services, still non verbal, doubly incontinent and with a cognitive ability of one-year-old. Jim Blair is currently a Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital in London, Associate Professor Intellectual (Learning) Disabilities at Kingston University and St Georges’ University of London and Clinical Advisor Learning Disabilities NHS Healthy London Partnership as well as Clinical Advisor Learning Disabilities NHS England. He is also the Health Advisor at the British Institute of Learning Disabilities and the Learning Disability Advisor to the Sates of Jersey. From 2008-2013 Jim was Consultant Nurse Learning Disabilities at St.George’s Hospital in London ensuring safe lawful timely care was delivered in partnership with people with learning disabilities. Between 2006 and 2009 Jim was President of the Royal Society of Medicine’s Council for the Forum on Intellectual Disability. From 2011-2013 Jim was Vice Chairman of Special Olympics Great Britain. Jim is an Expert Advisor to the Parliamentary Health Service Ombudsman, an advisor for the Down Syndrome Medical Interest Group and is on the editorial board of www.intellectualdisability.info. Jim is also a Specialist Clinical Advisor to the Care Quality Commission.