Last Friday 28th October we delivered our very first international conference in sunny Cape Town!
The conference was held at Heartlands Baby Sanctuary and I was privileged to meet some of the amazing staff and children there. Heartlands provides support and care to children who are sick or who are unable to be cared for by their families. I was super excited to hear about their multi-disciplinary work and see the targets for each individual child on the wall in the play room. It's great to see everyone take ownership of the child's developmental milestones and goals and you can really see how the children benefit from this approach. The little ones who I met were super excited by my jumping game, peek-a-boo and not so great dancing skills.
The focus of our conference was practical ideas for developing speech, language and joint attention in children with an ASD. We discussed the importance of joint attention, how it develops, what is different for children with autism and how we can make people just as fascinating as some objects or sensory experiences.
The participants were wonderful to work with and asked lots of questions about our experiences here in the UK. Autism is relatively unheard of in South Africa but there is a big move towards developing early identification services, assessments of need and educational services. I feel so blessed to have been invited to share my experiences and practices with so many practitioners driving forward change. Education and training is something Autism First is passionate about. Each child with autism is unique and requires an individualised approach. Therapy and intervention is not about curing or changing the fundamental nature of the child but about educating everyone to learn and acquire new skills, see the situation from a different perspective and about encouraging ALL of us to think differently, to learn from each other and to create compassion, empathy and shared understanding.
The participants asked about how to share information regarding autism with families and carers. I thought this was a superb question and one that is never easy to get right every time. It is also an incredibly timely question as next week we take another step forward on our journey towards a diagnostic clinic!
Each family is different in how they want to know about their child. I have worked with families who want an outright answer, families who don't want a label at all and some who know but aren't yet ready to move forward with the diagnosis. At whatever stage the family find themselves, this is OK. With everything in the world of therapy, we start where we are NOW, decide where we would like to be next and break down the steps to get there! We do sometimes have to use the words we don't want to hear to break down the fear they hold over us but no label should ever diminish the personality of the child. Let's look at everything from this moment and take each day at a time. We look beyond the word and see more into the heart of the situation. What can I learn from this? What can others learn from this?
So, in answer to this question that was posed at the conference, I say that we share honestly. We talk about what can happen, what may happen next and then ask the family what they want and how they feel about this information. Meet them where they are and be ready to answer questions as and when they come up. It is also ok not to know the answer to those questions! For me, one of the greatest aspects of working in this field is the research, the finding out and questioning before formulating a response. Use the words, break down the fear they hold but be sensitive. Provide information in ways that it can be digested but decide this on an individualised basis, just as we decide with the child on the spectrum. How much is too much? That all depends on the individual!