'Ten Rules for Delivering a Diagnosis of Autism or Learning Disabilities in a Way That Ensures Lasting Emotional Damage' is the latest in a series driving healthcare standards upwards.
An appeal for diagnoses to be made more constructively has been made in a new book launched this spring. We arranged an email interview with authors Viki Ainsworth and Jim Blair to learn more.
Learning Disability Today: What inspired you to choose this topic for your latest book?
Viki: My inspiration came from two decades of personal experience on behalf of my daughter, combined with the experience of countless other families we have had the privilege of getting to know during our journey through the world of learning disability.
"It is neither good news nor bad news. It is information which must be given in a considered, reflective and supportive manner."
There are too many tales of trauma at point of diagnosis and lack of post-diagnosis support and it needs to change. It wouldn’t take much and the explanations and commentary in the book will hopefully open the eyes of all those involved on a diagnosis pathway.
Jim: From my clinical experience the way the initial diagnosis is shared with the individual and families has a huge impact, both negative and positive. It is vital for health professionals to realise that this is the most important moment in the lives of those in front of them. It is neither good news nor bad news. It is information which must be given in a considered, reflective and supportive manner, offering contacts of organisations and groups that may be helpful. This so the people receiving the news do not feel they are all alone and their life as they know it has completely ended.
Learning Disability Today: There has been something of a media debate recently around whether autism is over or under-diagnosed. The argument has upset many families. In what circumstances can it be important to seek a diagnosis and what are the benefits?
Viki and Jim: Parents often have a gut instinct regarding their children and it’s frustrating if they have concerns that aren’t taken seriously. It’s not a question of who knows better, healthcare professionals or parents, but instead working in partnership in the best interests of the individual concerned. A diagnosis can be beneficial in many ways, from guiding future care, to practical and financial support to managing expectations and more.
Learning Disability Today: How does the diagnosis journey differ with learning disabilities?
Viki and Jim: Learning disabilities are not always immediately obvious, as can be the case with those on the autistic spectrum, and often gets missed due to other medical issues. But with both diagnoses there are similarities: parents not being taken seriously, being told they’ll grow out of it, everyone develops at different pace, it’s too early to say, etc… But early intervention is vital and opportunities are often missed while we’re waiting for small children to “grow out of it”.
Use of terminology can also be misleading regarding learning disability – developmental delay is used as a catch all for children and young people who may have multiple issues but haven’t been diagnosed, but it’s misleading for parents as it infers they will catch up whereas this is not always the case.
Learning Disability Today: What would you advocate when delivering a learning disability diagnosis?
Viki and Jim: Never assume that individuals and their families are aware already or must realise that something “isn’t right”. See the person in front of you and truly listen to their story and read their reaction so you can pitch what you have to say at the right level. It may be routine for the person delivering the diagnosis but it is always the recipients’ first time and it needs to be recognised that it’s not just another day at the office.
Learning Disability Today: What additional rights do diagnoses afford people in the UK?
Viki and Jim: A diagnosis can open doors to relevant support groups, shared knowledge and experience, some insight into what the future could look like, financial and practical support to manage care.
Learning Disability Today: What motivated you to write this book in your series and what were the prevailing messages you kept hearing during your research?
Viki: My motivation was personal. My daughter actually doesn’t have a diagnosis and we came to use our own terminology of severe learning disabilities, which was then reflected by health professionals. We tried to get a diagnosis for many years and the flippancy and lack of understanding or desire to help was, for the most part, shocking.
In the early years no one took time to think about what it might be like for us trying to find out what the future held for our little girl and whether she would be able to thrive, medically and personally. It was lonely and heart breaking. Sadly, it’s a story I’ve heard a lot from other families over the years. Both getting a diagnosis and not getting one, the manner of delivery can perpetuate that feeling of isolation and fear.
Jim: This is an essential topic, for all health professionals to tune into the frequency of those in front of them. Giving and sharing information is difficult and for professionals can feel like a minefield. This book seeks to address that by enabling them to understand how it feels for the recipients’ point of view as well as helpful pointers to getting delivery right. This is life-changing, future altering information that must be shared in a supportive, constructive manner at the pace of those who are receiving it.