The journey between realising your child may have an Autism Spectrum Disorder and having that suspicion confirmed can be a difficult and confusing time for parents. In Tower Hamlets, autism is the third most prevalent condition in children after asthma and eczema. Seeing first-hand how parents struggled during the time it took to get an assessment to confirm ASD, Nursery Nurse, Rabia Begum from the North East Locality came up with the idea of developing a support group, for families awaiting assessment, to have a place where they could address their concerns, learn more about the condition and to have a safe space to discuss ideas and solutions.
Earlier this year (April 2018) six families whose children were awaiting diagnoses, were invited to attend a four-week long support group. Of the six families, five had no prior knowledge about ASD, highlighting the need for increased support and guidance for parents in this area.
The support group followed a structured programme with each session having a clear aim.
- Session One - Play and communication.
- Session Two - Responding positively to your child.
- Session Three - Speech and language including meeting the speech and language therapist from the local child development team.
- Session Four - School options including a presentation from a teacher from the local specialist ASD school to discuss schooling options including main stream schooling.
The families involved shared extremely positive feedback about the sessions. For many of them, it was the first time they were able to meet professionals involved in the assessment of their child and to ask what care their child may require after diagnosis. The small size of the group meant that they felt confident to really engage and ask questions, discuss and understand the process to diagnosis. Parents were also shown strategies to help their child to communicate and made connections with other parents who were going through similar experiences.
The location of the support group sessions were also an important factor in their success. Held in the Marner Children Centre, many of the families reported never having previously accessed children centre services and said they would be more confident about using them as a resource in future.
This project has shown the important part the health visiting service plays in the early identification of children with Special Educational Needs Disability (SEND), within their role of providing developmental reviews of children at two years old. In Tower Hamlets, we achieve 85-90% of these reviews, a key factor in increased early identification of developmental issues. But identification is just the first step. Supporting parents through the journey is critical and that's what this project aims to do. One parent said about the group: "It helped me to understand different methods to interact with my daughter", while another said: "It was useful for me to know how I can support my child at home".
Going forward, another series of support group sessions is scheduled to take place in February 2019 and there are plans to roll out the model across the Borough.
This successful project all stemmed from one Nursery Nurse's idea to support parents awaiting their children's ASD assessment. She reminds us that listening to the people we work for is the key to developing services that really make a difference. Rabia said: "While Tower Hamlets is a very overcrowded area, the majority of our families are alone and very isolated. I personally found that by having the family support group, parents are able to meet each other, share ideas and go through this very difficult and anxious journey together. To bring families together to help and support each other brings a community together."
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