Understanding and meeting the needs of children with Down syndrome and autism
Autism in Down syndrome: prevalence, profile and clinical implications
- School of Psychology, University of Surrey
Individuals with genetic syndromes associated with intellectual disability are significantly more likely to present with social-communication difficulties that are consistent with a diagnosis of autism compared to the wider intellectual disability and general populations. However, there is significantly lower recognition of autism in clinical practice within the genetic syndrome population, contributing to poorer long-term prognosis. The tendency for atypical presentation of autism characteristics in genetic syndrome groups further compounds the assessment and diagnostic pathway, explaining the lower rates of recognition. In this talk, I will present evidence for increased prevalence of autism in individuals with Down syndrome and describe the associated profile of autism characteristics. Purported differences between individuals with Down syndrome with a dual diagnosis of autism and those without will also be presented. Implications for assessment, diagnosis and intervention will be discussed.
Positive behavior Support changes lives
- Family carer co-trainer Challenging behavior Foundation PBS training
- Family carer co-trainer for E-PAtS (Early Positive Approaches to Support)
Background: My daughter Lucy, who has Down syndrome, received her diagnosis of autism at 5 years of age but she began displaying some behaviors that challenge when only 3; this resulted in social isolation and high levels of stress for our family. We have been using Positive Behavioral Support for the last4 years and have successfully reduced the behaviors of concern. I will describe our personal journey and how we have Positive behavioral Support to successfully reduce behaviors that challenge. Without an understanding of this approach, I fear we would still be in the loop of trying to stop the behavior, rather than trying to meet the underlying needs that the behavior is communicating.
Using Positive behavior Supports
Understanding the functions of behavior, the arousal curve and the important role of setting events has been central to the success we have experienced. The strategies we use are almost entirely proactive, for example visual supports, good routines, appropriate boundaries and choices to support Lucy and reduce her need to use behaviors to communicate. I will outline these in the presentation.
Outcomes: The challenges we experience are fewer, less impactful and always understandable. Now Lucy's needs are being met, she is regulated and able to learn and develop skills. We have greater confidence when out in the community and have strategies and tools available to support her.
With a greater understanding of the way Lucy perceives the world we can predict situations in which she will need extra support and can advocate for the correct level of support in school and respite settings.
I hope that by sharing our story families with loved ones with complex needs will feel reassured that they are not alone.
Meeting the SLT needs of children with Down syndrome and autism
- Parent, co-ordinator, trainer, Down Syndrome Bradford
Background: In October 2019 I ran a workshop for speech and language therapists aimed at sharing our understanding of how children with a dual diagnosis of Down syndrome and Autistic Spectrum Condition develop speech, language and communication. The aim was to work together as a group to find strategies to help improve the communication of children with a dual diagnosis.
Approach: During the day we unpicked the many characteristics associated with Down syndrome and/or Autistic Spectrum Condition looking at social, sensory and medical needs with reference to three case studies from our early development groups.
Outcomes: Today's short talk will focus on our case studies, the details of our delivery, what worked, what did not and how each child managed to make progress in their own way. It will also outline some of the practical suggestions from the SLTs at the training
Feedback from the SLT training included:
- The day has started conversations which help with considering the presentations and management of children with Autistic Spectrum Condition & Down syndrome.
- Today highlighted to me the overlap of difficulties / symptoms seen in Down syndrome & Autistic Spectrum Condition
- Highlighted the need to look at similarities in terms of medical model and social model