For Families and Carers : Previous ASC/DS Meetings

Dual Diagnosis Autism Spectrum Condition (ASC) and Down’s syndrome (DS)


13 October 2016, Bury

For families

Topics:

  • Wellbeing in children and adults with dual diagnosis ASC/DS and complex needs
  • Parental wellbeing, recognising and alleviating stress

Parent’s told us about their proud moments; here are some of them:

‘Our adult daughter met the mayor and showed him around her workplace; she held her head up and she was confident’

‘I am proud of holding a successful 8th birthday party for my daughter. It was tailored to her needs so we invited fewer children, we served her favourite food which is beans on toast, and we kept the celebration short.’

Speakers: Geraldine White Clinical Psychologist, Stuart Mills DSA Information Officer, Jane Mitchell Registered Learning Disability Nurse and Mindfulness Teacher

Understanding Dual Diagnosis of Autism Spectrum Condition (ASC) and Down’s syndrome (DS)


12 October 2016, Bury

For practitioners and families

Topics:

  • Current thinking about dual diagnosis ASC/DS
  • Approached to diagnosis
  • Support strategies for children with dual diagnosis ASC/DS including how to support communications, sensory differences and behaviour

Speakers: Geraldine White Clinical Psychologist, Stuart Mills DSA Information Officer

Supporting children and young people who have autism spectrum condition (ASC) and Down’s syndrome


1 May 2015 Manchester

For parents

Topics:

  • Understanding the Down’s syndrome phenotype
  • Understanding the diagnostic process
  • Good practice in supporting children with autism spectrum condition
  • Support strategies for children with Down’s syndrome and ASC, including how to support communication, sensory differences and behaviour
  • Question and answer sessions

Speakers: Geraldine White Clinical Psychologist, Stuart Mills DSA Information Officer, Gillian Bird Training Services Manager

Understanding dual diagnosis of autism spectrum condition (ASC) and Down’s syndrome


30 April 2015  Manchester

For practitioners: paediatricians, CAMHS workers, health visitors, social workers, teachers and allied professions

Topics:

  • Understanding the Down’s syndrome phenotype
  • Approaches to diagnosis
  • What happens after diagnosis?
  • Question and answer session

Speakers: Geraldine White Clinical Psychologist, Gillian Bird DSA Training Services Manager

What it is like to have a diagnosis of Autism


18 April 2015

Paul Isaacs of Autism Oxford gave a talk about what it is like to have a diagnosis of Autism.

You can find out more about Paul here: http://www.autismoxford.org.uk/index.php/profiles/paul-isaacs

Paul’s presentation can be downloaded here

Research into prevalence and clinical and behavioural difference between DS and ASC/DS


4 October 2014

There was a good turnout for the meeting with 26 parents and siblings attending. For some, it was their first contact with the DSA and for others it was their first time at an ASC/DS Meeting. One mum said that she felt overwhelmed at visiting DSA’s offices and being surrounded by other parents ‘like her’.

Dr Jeremy Parr (Clinical Senior Lecturer and Consultant in paediatric neurodisability, Institute of Neuroscience, University of Newcastle) joined us via Skype to talk about whether we can improve our ability to make ASC diagnoses in young children with Down’s syndrome.

Dr Georgina Warner (Institute of Psychiatry, Kings College, London) gave a presentation about her research project looking at ‘Autism Symptoms and Behavioural Disturbances in Children with Down Syndrome in England and Wales’

Georgina sent 1382 questionnaires called ‘Differences among children with Down syndrome’ to members of the DSA in England and Wales, and received 499 back. She considered it likely that families who had identified their child as somewhat ‘different’ to the stereotypical perception of DS were more likely to have responded as they personally identified with the title of the study. 37.7% of the children whose parents responded met the threshold for ASC. Previous studies showed that around 15-20% of people with DS screen positive for ASC.

Georgina’s research also shows that those with ASC/DS have an atypical profile which may be why parents find it difficult to get a diagnosis. We hope that Georgina’s research will begin to raise awareness of ASC/DS, alter thinking about how this group of children present and lead to the development of more appropriate screening tools which improve diagnosis.

In the afternoon Gillian Bird (Down’s Syndrome Association) talked to the group about communication and encouraged parents to think got them to think about and discuss the many ways in which their children communicated.

We will be using feedback from the meeting to develop and expand the ASC/DS area of DSA’s website

The Use of Medication in Managing Behaviour


5 April 2014

Professor Jeremy Turk talked about the use of medication in managing behaviour

Professor Turk is Consultant Child and Adolescent Psychiatrist in the South London and Maudsley NHS Trust’s Behavioural Phenotype Learning Disabilities Service, and a Professor of Development Psychiatry at the Institute of Psychiatry.

Professor Turk talked at the meeting about what conditions medication might be useful for whilst emphasizing that medication should never be the first step in tackling a behaviour issue. Professor Turk stressed that medication should only be considered after psychological, educational, family and social approaches have been tried first. During his presentation Professor Turk revisited the point several times that medication should be prescribed as part of a multidisciplinary approach (e.g. with other services such as Social Services, Education, Psychology also providing support). Professor Turk also sought to dispel some of the concerns held around medication by talking about the targeted and refined nature of the medications now available compared to the ‘blunt instruments’ such as Valium which were widely used in the past.

Download the presentation Pharmacological Treatments for Individuals with Down Syndrome

Current Thinking and Practical Behaviour Management


5 October 2013

In October 2013 the DSA held a meeting to provide information and support for parents and carers of children with a dual diagnosis of Autism Spectrum Disorder and Down’s syndrome. The meeting was really positive, and those who attended found the day informative and helpful. The day was divided between a presentation from our developmental psychologist Gill Bird and a general discussion, where parents talked about how their lives and ways of coping and suggested ways the DSA could support parents better.

You can download our presentation from the day, ASC/DS meeting for parents.